Sign our cluster headache guest book!

You may not feel like it sometimes, but believe it or not, there are other people out there who actually do know what its like to suffer from the most incredible pain in the world! :-) Sometimes it can be of great help just to know that we are not alone!

If you suffer from Cluster Headaches, or if you would just like to say hello, please take a moment and add your entry to this page by following the link below. I would LOVE to see the name of every person in the world that suffers from Cluster's on this page! (I can dream can't I?)

This is my 1st post in several years. I use'd to sign in as OLDRED82 (I think). Now I'm OLDRED90. I hadn't had a real cluster for about 5 years...........until Tuesday when I had a "Doozie" It lasted 9 hours and only left when I fell asleep from exaustion. After all these years, I keep wondering if my clusters are connected to the pollen seasons because in thinking back, my cycles seems to have been associated with the spring and fall pollen seasons, here in New Hampshire. When I 1st had them, I was 55. At the time I thought the clusters started due to stress & too much coffee. After 25 years of 2 cycles per annum they started fading and I haven't really been botherd for the past 5 years. Im running into the the same problem as before. You call the Doc for an appt. that requires a referrall and by the time you get an appt. the cycle is probably gone so you tell yourself "What's the use". After the headache I had 2 days ago, I stared taking 10 Mg of Loratadine a day. And I've pretty much stayed indoors .I've been OK yesterday and today (so far), I'm pain free. I thought I'd sign in to see if anyone has found the magic bullet. Now that I'm 90 and suffering from 2 leaking heart valves and prostate cancer, I wish I had had myself testeed for allergies a long time ago. I've always maintained that I was not allergic buut I've never been tested. I've called my Neurologist and been told that I need a new referall because it's been too long since I saw him last???????? That surprised me because all of the other specialists I've seen over the years consider me to be one of their patients after the 1st appt. Getting old is TOUGH.
Raymond Dubois <raymondd938@gmail.com>
Dover, New Hampshire United States

had these since 2010... started out horrible and over the years more mild and several years with none. Yesterday I had my WORST EVER and ended up in ER with morphine and extra BP Meds...what I used to think were 10's were probably only 8's... last night felt like a 20!!! OUCH
Who's That Guy <whosthatguy0117@gmail.com>
Anaheim, CA United States

Hello all. It s been over 25 years since I last relied on this site for support and sanity through several years of clustering. Think they were associated with menopause. Thought I was well rid of them til the last few days. Seems they are on their way back, episodic, more or less same time daily. Hurts like hell, left sided - they were right sided last time. I am wondering if anyone has experienced a return of CH on starting chemotherapy. I am on my first cycle of 8 for bowel cancer and the thought of having to deal with CH as well as chemo is terrifying me. Any help/suggestions gratefully received. Please all stay safe in these challenging days. Meg
Meg Davidson <Bedlingtongirl54@yahoo.co.uk>
Lincoln, UK

Started getting some really hard hitting pain in the left side of my head behind my eye a few years back. Never really knew what it was except that it would come on real fast, hit me like a 2x4, and then leave. In the last year or so I have had a helluva time with it and have sought treatment from a neurologist. I've tried just about everything so far, but not really much works. Rizatriptan helps, but only for a short while. I can usually tell when these bouts are goin to happen as my left eye starts to droop, I get congested out of nowhere on that side, and then I get a ringing in my ear. I had an MRI done to check things out and they found a small pituitary tumor, but state that it isn't causing any issue. This tumor is literally in the exact place these headaches come on every time. Behind my eye, left side center. I'm on shots now for the tumor causing hormone imbalances, they've detected my CSF is double the normal pressure for some reason, and just keep throwing random meds at me to see what sticks. I found this board and hopefully will be able to dig up some info on how to help manage these as it is quite debilitating when an episode occurs. I feel for each of you who have to suffer with this....it's hell.
Craig D. Delong <lordsac26@gmail.com>
Cairo, NY USA

Hello! I ve had CH s for over 6 years, mine hit in the middle of the night and last about 2 days, right eye swell/droop, etc. I have been to the Mayo Clinic and have been working with a local neurologist. I have tried everything except the antipsychotic drugs. I was wondering if anyone has tried Botox and the success of that?
Debbie G. <Travelspinner@yahoo.com>
San Diego, CA USA

I am new to this board, although I have had cluster headaches on and off for 20 years. I thought I was done with them considering it has been seven years since my last one. I was weong. I am now in my fourth week of the cycle and the one last Friday almost ended me. I am married with a daughter and still had thoughts and actions that I cannot explain. The pain so excruitiating that laying in the snow outside didn t work, banging my head on the concrete basement floor was useless and then I went to the knives. I know it sounds insane, but there was absolutely nowhere else to turn. I put the knives down and screamed my way through it again. I made it thru the week and the doctor placed me on sterioids. Two more clusters followed. I now have the flu and the headaches seem to have subsided. I need to find out what others do to cope which is why I found this website. Thank You
GT
Ohio USA

Recently diagnosed.
Anthony Corrente <anthony2221974@gmail.com>
Attleboro, MA United States

ive been a sufferer for years. i felt alone for many years. finding out theres more of us out there. thanx
jason smith <jmsmith2003@msn.com>
port angeles, Washington USA

Hello all. I am male, 61, a registered nurse (ER,ICU) for 23 years. I am in my 6th week of 2 to 3 a day bouts with the beast, never had even taken a BC for a "headache" in the past. I also can't remember treating anyone for clusters in my clinical practice, migraines in the 100's for sure, not clusters. Anyway here we are, my symptoms are classic down to red droopy watering eye, nasal congestion, unilateral crushing eye, jaw, temporal pain. My temporal artery gets so big and painful I originally thought I had temporal arteritis but a 0 sed rate said otherwise.As the days went by it became pretty clear what I have. After a brief stint with steroids and opioids (with 0 effect) I tried the next obvious choice a triptan (Imitrex). Can't afford the injections but the 100mg pill has worked pretty well so far but I have already been told by the pharmacy that Im going to need "something from my Doc" to get anymore. Wish I could say that this won't be a problem but my experience with healthcare in the good ol USA says don't hold your breath. A simple script apparently isn't enough to justify taking more than 2 pills in 24 hours.....As you all know this crap doesn't matter to us AT ALL as I'm sure we would all agree that what ever side effects exist for the thing or things that help us are completely insignificant compared to the pain. Anyway, thanks for this site and I"m open to communication with any of my fellow sufferers.
Stan Ballance <scabnrn@gmail.com>
stumpy point, nc United States

I am so comforted in finding this site. I have been diagnosed with M since I was 6. 3rd Neurology said, you've been misdiagnosed, you suffer from cluster headaches. This was a week ago. I have been through 6 rounds of Botox with no help in sight. I danced with the devil for over 4 months last year. Worst time of my life, horrendous. I am a pacer. I will post for the #1 soon. Thank you all for being here. I suffer all year round, like so many of you. Nice to know there are sufferers out there like myself. Not that I want people to suffer. You know. Thx
Jenny Bozoff <jbozoff151@gmail.com>
Long Beach, Ca USA

I wanted to let you know about a resource for those with episodic Cluster headaches that aren't having much luck with conventional therapy. Dr. David Stickler out of Charleston SC (don't worry for those far away the sponsor Eli Lilly is reimbursing those that qualify for travel expenses) is currently enrolling a clinical research study that is testing an experimental treatment for cluster headaches. This medication is administered as a once monthly injection of a humanized, monoclonal antibody against calcitonin gene-related peptide (GCRP). CGRP is a potent vasodilator and a key mediator in neurogenic inflammation. The investigational product being used in this trial is a potent humanized monoclonal antibody that binds CGRP and inhibits functional effects of alpha and beta CGRP with equal potency. Previous research has shown that CGRP levels are elevated (approximately 2 times their normal levels) during cluster headache attacks. CGRP levels normalized following efficacious treatment or spontaneous resolution. For this reason, it is believed that this investigational product could show promise for reducing the frequency, and the severity, of cluster headache attacks. He is currently looking for patients 18 to 65 with a history of EPISODIC CLUSTER HEADACHES lasting greater than six weeks. Subjects can be in an active cluster period or in remission at the time of screening. His office number is 843-789-3707 or his trial website is clinicaltrialssc.com
Megan Bickford
Charleston, SC USA

I have headaches daily, 24 hours a day for 37 years! I too have tried everything. I also have a seizure disorder! I have a wonderful life, people I love, but can no longer take part as I can't stand noise and have a nervous system from trying to funtion through with this monster! No sleep, can't eat and I give up, I can't do this any more! The heroine addiction has thrown us under the bus! we suffer!
Sammia Panciocco <sammiapanciocco@comcast.net>
60 telfer circle, NH United States

Hi everyone, I ve been away from this site for some time now, but sadly seems to have found me again and dragged me back. My first CH bout was in 1992 when I was 18. I had further bouts each spring for the next 4 years. They were initially short with relatively few attacks. I then had a remission of 18 months and the next was nearly 2 years, but the bouts were worse. Diagnosis came in 2000 and around about this time I began to suffer with bouts of shadows. Since then, I ve had lots of these shadow bouts . They don t come at a particular time of year but they almost always begin a few weeks before a holiday sometimes months before if it s booked early. I ve only had 5 or 6 serious CH attacks in that time, with the last being back in 2004. Sometimes during these shadow bouts it feels as if an attack does get through but doesn t get above a 1/10. It leaves me feeling a bit ragged but they re rare. I ve been very lucky, but the shadows alone are frightening and they dominated my life for several years. I was even classed as chronic and used verapamil for a few years. But as time has gone on, I ve reminded myself that these shadows don t ever seem to result in bouts of real attacks and my last real attack was a very long time ago. It became easier to cope with the bouts of shadows over the years, which seemed shorter, less intense and somewhat predictable, especially after my kids were born. I stopped using verapamil in 2008. It was tempting to believe that CH had gone. Perhaps I d been misdiagnosed? Perhaps family life was the cure for me? It was always going to be too good to be true. A bout of shadows began about 4 weeks ago, but this time the phantom attacks were more powerful and frequent. I m still hanging on to the positives and trying to remain optimistic. As of today, I haven t had a proper attack, but the ones that break through are growing stronger. The fear has returned. We go on holiday in a week and I m hoping this will break the cycle, as it often has done in the past. My experiences pale when compared with many others, but I hate this as much as anybody. Joe
JoeK <jkoppel20@gmail.com>
Chelmsford, Essex United Kingdom

For about 5 years in my 20's "The Beast" used to visit every day. The worst thing about it is everyone thinks you are exaggerating it. I spent over a hour on the floor at a Home Depot when one of these hit.Who would do that? Fortunately it's been 15+ years but I spend EVERY second dreading it's return. The worst part is most people just don't understand. "It's just a Migraine headache." People with Migraine headaches don't bang their heads against the wall and want their heads smashed to stop the pain. Stay strong everyone. Live the cleanest life you can live, drink lots of water,and don't take the opioids they prescribe you because they are worse.
DJ <hounddog1937@gmail.com>
Portland, Or USA

Hello, I am the wife of a chronic cluster headache survivor. Every day, my husband fights the beast, for 2.5 years straight. He has had some type of cluster headache since he was 3 years old. But 2.5 years ago, all treatments hit a brick wall. I am relieved to find this page, and I look forward to learning and connecting. We only have one more drug on our list to try, and I hope so much it can help, that something can help. We use high flow oxygen and sumatriptan injections and verapimil currently. Minimal pain reduction, and continued chronic clusters. We have simplified and resimplified our life, sensory triggers, food additives, etc, and continue to add more to the list. I look forward to connecting more and also utilizing this space as a way to remind myself we are not alone. Thank you!
Erin <mclaugem@gmail.com>
Anchorage, AK USA

Hi, thanks for the opportunity to contribute. I have suffered each April (Northern Hemisphere) for the past 10 years (with the exception of 2016) with cluster pain [headache]. I get through each episode with the same restless routine, knowing the pain will end as suddenly as it began, within 30 minutes. I am currently experimenting with eating ice cream during and episode, which seems to help, but recently I've been told that Tabasco (hot sauce or cyan pepper) in the nostril of the affected side might help. I'm going to try that next. To all of you who experience cluster pain, I empathize, and I hope you find a method of reducing or eliminating the frequency and/or pain. Best-- EJ
EJ Lister <akaboreese@hotmail.com>
Burnaby, BC Canada

I'm 45 and started getting clusters when I was about 22. I thought I broke the cycle because I had been free of them for about 6 years but they decided to stop in for a visit about 2 weeks ago. They are overstating their welcome. They are nearly constant now and are taking over my life. Praying they move out soon!!!!!!!!
Paul Feller <Ptfeller@gmail.com>
Dubuque, Iowa USA

Hello, I have just found this website, which looks amazing. Thank you for creating it. I suffer from clusterheadache from 2 years. I took for two weeks some cortisone, but did not like it and neither my neurologist attitude,so I said no drugs. But I still take Tylenol or assimilated medicine, unfortunately.
Gabriela P. <gabriela_ro2001@yahoo.com>
Ploiesti, PH Romania

Hey guys. Been suffering for 12 years now, turning 30 in two months. I wrote something about CH on community site imgur trying to let people understand what we go through. If you want/can, take 15 minutes to read it, I guarantee it'll resonate. Http://imgur.com/gallery/k7TAz
Rico <rico@gmx.com>
Antwerp, Antwerp Belgium

I've suffered with Clusters for 43 yrs now. Thought they were gone, but after 3 years they are back so bad for over a week with between 4 to 6 attacks a day/night! Afraid to eat, sleep, bend, strain....seems almost anything brings on a headache. Lots of hot showers and hot coffee helps me for some reason. Good luck to all the sufferers out there. I'll be thinking about you all tonight while pacing and rocking!
Susan <salemay@msn.com>
Lowell, MA USA

Suffered for 30 years and was told by my neurologist that they should end after 60. Guess hardening of the arteries is a good thing because at 65 mine became mild and of short duration and finally ended. O2 at 10+ was the short term answer along with imitrex nasal and an understanding mate.. As you all know these are the worst kind of torture but also know they do end. Keep fighting.
Chuck Forsyth <chuckforsyth@att.net>
Ft Worth, TX USA

I have been suffering with cluster headaches for almost 4yrs now. the attacks happen the same time of yr. mid to late October tell mid to late January. I have 3 to 5 attacks every day that start after I go to bed. I have been to the ER many times. im at a loss for what I need to do to get some relief.
dennis hopkins <hopkinsdennis4@gmail.com>
college station, tx USA

I had Cluster Headache for more than 35 years. Recently I found out after all these years that Topamax plus Cortisone for Certain period according to doctor reduce the frequency of the attacks and reduce the attack time
Ibrahim <ilghawi@gmail.com>
amman, Jordan

New to this amazing site. Finally I can relate with other people that have this horrendous disease.
Cesar Villasenor <cevillasenor@yahoo.com>
Toronto, ON Canada

Hello my name is Andrea. I have been dealing with cluster headaches for many years now. It is very hard to find a doctor who understands or knows about cluster headaches or even wants to research it. I have been to numerous neurologist and other doctors several times over the course of 10 years they all don't seem to understand the severity of the headaches. I take so much Excedrin in a 12 week period I'm scared that it might harm my other bodily organs.It is hard to get people to understand the mental state you're in while having one of these headaches. I take rizatriptan whenever I can get them prescribed and they tend to help. I have taking Medrol pack which gave me a year to relieve headaches it was the best year of my life. It is hard to keep up with daily functions and taking care of my family most of all my kids seeing that I have up to 5 severe headaches a day. I would just like some relief to my life to know that I don't have to go the rest of my life dealing with this pain. I don't know if there's anything you can do to help but I'm kind of out of options. I have been doing my own research over the years because I don't always have medical insurance and I have come to find that these headaches really have no cure. You can only change how many headaches you have a day or you can bring down the intensiveness of the headache. I'm really not too sure what to do anymore if you could give me some tips or even just raised doctors awareness of cluster headaches I will be forever grateful! Thank God my remission period Is almost here! #ClusterHeadacheAwareness
Andrea Watson <watsac12@gmail.com>
San Antonio, Texas United States

it helps to not feel so alone in the pain
Marie Hughes <mjmcilwee@hotmail.com>
Henrico, VA USA

All the best to everyone out there who suffers with this "beast". I was diagnosed 4 years ago with chronic cluster headaches.
Mark H <mheff@shaw.ca>
Calgary, AB Canada

Hi my name is Lorna....I don't suffer from Cluster Headaches...But Boyfriend does...these started when he was young...and then in his 20's and 30's...I met him when he was 50 ..and several years back...was when I went thru this with him...wondering what they were...he didn't even no,,he was in so much pain..and so much anger...and so scared...I was so afraid for him...I finally got him to go to the hospital...and the young girl at the desk looked at him and said...You are in here for a Headache...really...I thought he would loose it...Thank goodness a Dr that was new to the hospital over heard me explaining the symptoms...and took us straight back...and educated us on this ...this round of cluters lasted about 8 to 9 months..with no relief...sometimes 5 to 10 a day...somelasting 5 mins..to couple hrs...leaving him mentally and phycally drained...as well as me also..but it isn'tabout me...I want to be able to help...I feel so helpless..so this dr said something about oxygen...Now to get a prescription for it...he can't work...no money...well not much..going to the Health Dept...we were there and a bad one came on...and he screamed and threaten sucide..they were going to baker act him...when one nurse said...to another...go get the oxygen...what a relief...for him and allof us...he nows has prescription...but we are still trying to find the right way of treating that...he has that in home oxygen tank thatproduces its own oxygen..we found at a yard sale..for 60.00 Thank you Jesus....he also was able to get a portable tank...someone please educate me on the uses of the oxygen...what we can do to make sure he is getting the right amount...he has applied for disibilty...we are waiting..3 yrs now...He has been in remission for almost 1 1/2 years....and now they are back full force...Someone Please Help Us...Please....Thank you...Lorna & Rick...
Lorna Darley <tygercarts@yahoo.com>
ocklawaha, fl USA

I'm 59 and I had my first cluster headache episode in my late 30's. I have not had an episode in about 2 years now but this happened once before and then started again. I almost always get my headaches at night while asleep. I wake up with the raging pain behind my left eye. I have found 2 things that really help while having a headache: 1. Hot coffee 2. Lifting weights Not sure why but these 2 things really help. When going thru an episode and I wake up from sleep with a headache, I immediately put coffee in the microwave and start lifting a barbell I keep next to my bed. I do arm curls until I can't do any more and I can feel the pain subside. Then I drink the hot coffee. One good thing about this is that I get really muscular arms when I go thru the cluster headache episodes. :)
Bob Herrmann <bobh0526@gmail.com>
Marathon, Florida United States

I was 8 when I had my first CH; I remember it vividly. It lasted for almost 2 hours, and I passed out immediately when it was done. Thankfully I was only attacked by the one CH at that age. We know what it's like, and just the thought of any child suffering that way (even my younger self) brings tears to my eyes. My next CH didn't hit until I was 16. That was a series that lasted nearly a month, with 3 to 4 battles each day. Each time I KNEW I was going to die; each time I was amazed when I didn't. I clung tight to the adage, "this too shall pass", even when I didn't believe it. My birthday is in December, and in the fall before I turned 17 I hit puberty. My life changed. Sure, everyone said it would, but it wasn't until years later that I learned that mine changed far more drastically than they could've imagined. Puberty took a few years, and every other month or so during that time I would have a couple weeks of CH episodes. When I was finally finishing up puberty is when the real "fun" began for the Beast; certainly not for me. I was 19 when I last experienced level 2 on the Kip scale. It's been over 20 years since then that I have lived with a continuous baseline of headache pain that fluctuates between a 4 and a 5. Occasionally I'll have a good day, or a good afternoon, where my pain drops as low as a 3. At the time of my writing this (June 2016), I have had 9 days this year where I have spent at least an hour at a level 3. Glorious times indeed! People talk about having "pain free days"... I don't remember what those are like. However, as the infomercials are happy to announce, "But wait, there's more!" I ALSO get regular migraines and seasons of CH's in addition to my baseline of regular pain. I have truly become a connoisseur of headache pain. I live with shadows (rather ironic that's also my real name too), and get "spikes" of varying flavors of added pain. A migraine here, a pressure headache there... I have become so very used to living with them, and can easily identify one from another. But I don't fear them. There's only one kind I fear... The baseline rises to hold steady at a 6. "No. Please no. Not again, PLEASE!" The increased baseline can stay that way for days, weeks, or even months before the hammer falls - shattering my brain and thrashing in my skull. It wants to rip out my eyes and jellify my brain. "Maybe this time it'll just kill me and I can be at peace? Maybe? Please?" The worst of it is when I get an interesting stacking effect. The math is sickening, I know, but here it is in all it's horrifying simplicity: Baseline + Migraine + CH. Thankfully the combination doesn't happen often, but when it does, I am not coherent enough for pacing, or bashing my head against anything. I'm on the floor, able to do nothing but writhe and claw and punch and pull at ...myself? ...the floor? I really don't even know. When that happens I know only pain. I don't know where I am, or even WHO I am. Does it even matter? No. There is nothing else. Only pain. Some religious people talk of hell. Honestly, their various descriptions of it sound rather delightful in comparison. I'm not religious in the slightest bit. How could I be? My reality simply isn't the same as the fantasy world the people around me experience. I say "fantasy world" because what others describe isn't even close to anything I know as reality. The look on my most recent Dr's face when he gave me a new prescription drug to try was great. He said, "When you start to feel the first signs of a headache..." I laughed (a bit derisively) and said, "Doc, I don't have a time machine, or I might just do that." After explaining that I don't HAVE a time when I am without a headache, but that I do get spikes, and some very bad ones (he doesn't understand CH's; honestly, how many even COULD, even if they tried to seriously imagine it?), we decided that I'd try the meds when I felt the beginnings of a spike. The meds did nothing but at least he's trying. There is one med that seems to help drop the baseline down by 1 point (on the Kip scale) tho. Verapamil. It doesn't do anything else for me, and I take it at max dose every day, but it's 1 point lower; bringing my average day down to a stable 4 on the Kip scale. I'll take it. My wife and I are currently homeless, even tho I've got multiple high level degrees, and am a recognized polymath with many skills. It's difficult to keep a job when the suffering is chronic, and others just don't/can't understand. But I understand; they have a business to run after all. Would I keep someone around that could suddenly not come in to work, or leave early, or spend an hour or two in a bathroom stall crying, thrashing about, and/or making a ruckus; scaring the employees or clients instead of getting work done? Probably not. There's a teeny-tiny light of hope tho. I found an advocate that has been working with my doctor and pushing him to help me get disability. He's still against it (because he doesn't understand how I can really be disabled "just from headaches"), but the pressure is on now, and not just from me. So I hope. If I can get it, then maybe... Just maybe, my wife and I can have a bed to sleep in together before winter comes again. It's not going to cure my pain, but at least then I might not have so much else to stress over. My wife. She's a wonderful woman, and empathizes with what I deal with (even tho she can't really relate not that I would want her to relate); how could she not? She's far stronger than she realizes, and has stuck with me for almost 6 years of a wonderful marriage now. She doesn't know it, but she's the only reason I haven't committed suicide. I'm not a "suicidal person" tho, as I don't have that kind of personality. But when the Beast comes to play I don't have ANY kind of personality. There's only pain and the singular desire for it to stop. Thanks for reading if you've read my story this far. I look forward to getting to know some others that might be able to relate to the levels of pain I experience. I wish many pain free days for you all!
Shadow VanDusen <Prince.Demitri@gmail.com>
Eugene, OR USA

I've been a sufferer for 14 years but was only diagnosed 2 years ago. Though I did not get a cluster at all last year, they are back with a vengeance this year. I am crying while reading everyones entries. It is so upsetting to me that something so debilitating has no information or a real fix. I was recently prescribed with Zomig sprays but with insurance it costs $300 for each spray. So in my at least 30 day cluster I might be able to have 2 days of relief from the 2 sample sprays I have been hoarding. I was also prescribed Topamax to start in the fall as a preventative drug. Does anyone have experience with using this as a prophylactic? Being that I only get clusters in the spring or fall but sometimes not at all but sometimes both, I feel that this could be a waste of money since I might not be getting a cluster in the fall anyway. How can you tell something works when it's preventative? It is so sad that no one takes this seriously except for the sufferers. I really feel like people think I am exaggerating so I have to call them migraines so people understand. Glad to find a place where people understand what I go through.
Leah <lspindell337@gmail.com>
Long Beach, New York United States

Female age 57, Chronic for 3 yrs, recently diagnosed. Need a detailed video of how to use the oxygen and mask
barbara
FL United States

Hello all, I have been afflicted with CH for 43 years my last remission was 5 years and I truly thought I had finally "outgrown" them (what a wonderful 5 years though). Well they are back and I am pissed.It is very interesting to read all the causes and cures but we all know it is all about the oxygen and Imitrex injections for relief. 75 percent of mine come after falling asleep at night and then hitting the oxygen and an injection if that does not work. Tonight he oxygen has been good to me but after waking up every half hour I am just going to stay awake to see if sleeping is part of the cause, sounds weird right? Maybe there is a sleep quotient in this? Maybe staring at this computer is a problem cause I am getting a shadow now. I am starting week 2 of a usually 6 week bout. Peace to everyone.
Christopher <cactuschris@sbcglobal.net>
Sherman Oaks, California United States

My name is Brianna. I started my first Cluster when I was 16 years old. They come every other night and lasted 30 mins to 3 hours with no relief. Finally I saw a Nuerologist and he Diagnosed me with Cluster Headaches and put me on 60 MG of prednisone and 120 MG Verapimil. The pain would subside and I wouldn't get another cluster for two years. They come back recently on March 18 and I called my Nuerologist and got started on my regular medication regimen and this time the medication isn't working. Im freaking out. Ive just started the Sumatriptan 100 MG tablets when the headaches start and it works sometimes not everytime but it takes 40 mins to kick in, here in NM the Sumatripan injection is on back order and I cannot get them. I also have two oxygen tanks at home and the oxygen does not help at all. Ive never had these so frequesntly before. Its been five weeks and its almost everyday I get one or even two that leave me exhausted and drained. I have two babies and a fiancé and I know its taking a tole on all of us. I don't know where to go from here, im in misery. Like legit misery.
Brianna <briannadawnmontoya@gmail.com>
Santa Fe, NM USA

Hello to everyone I am I believe a chronic cluster sufferer since February 1015. I've had about one month back in October of no pain. It's daily and it hurts so bad. My cycle rite now is from around 3:00 pm till 9:00 pm with about 5 spikes each lasting 30 mins to a hour. I've been to many doctors including Diamond Headache Clinic with no real results. I've been hitting the Imitrex auto injector but it's pretty tuff on me. It feels like my chest and head are being smashed flat. The feeling last for about 20 mins, I can't drive or function hardly. Is this normal? Cambia seems to help more than anything but I can't get but 9 of them a month so I end up suffering trying to wait to use on the bad ones. As you know I end up regretting skipping each time. Any advice out there to help me. I'm very tired and desperate.
Mike goolsby <differencemakerministries@hotmail.com>
Hernando, Ms USA

30 years with cluster cycles. Understand the pain and suffering. What comes with my clusters is intestinal bloating and gas as if my body is releasing toxins. Generally the warning sign of a oncoming cluster cycle and when in a cycle (3 + months) always prevalent. Lots of water, fasting, diet restrictions help some but feels as if my inner core is somehow out of balance and fueling the cluster intensity.
Joel Petrie
La Jolla, CA USA

I've had CH for 15 years. From Oct 2013 to July 2015 I had chronic CH, 3-4 per day. I changed my neurologist and she prescribed Namenda which is used to treat Alzheimer's. It broke the chronic session until last month so I was extremely pleased with the results. I'm thinking this is my typical seasonal session. Hope this helps someone...
Dean <dean.cainraider@gmail.com>
Honolulu, HI USA

ever since the age of 18 , i have had my fair share of annual cluster headaches, normally at season change. i last had a cluster 5 years ago and since then , presumed that i had out grown them since im currently 51 years old. reading the forum and the personal experiences of sufferers only reminds and brings back the realities of why they are called suicide headaches. well to my horrow 1 week ago , i re entered the dark passasge of cluster headaches , initially i refused to beleive it and presumed a sinus infection , prompting the usual rush up to the chemist for nose spray and the rest. headache after headache , bashing my head againt the wall , i eventually after 4 days just knew the clusters where back. i knew , i needed proper help this time , i went to a nureologist and he prescibed [prednisone 5] which is a steriod and was put on 8 tablets per day along with [verahexal sr 240 tab 30] which is a calcium blocker and was put on 2 tablets per day - he also prescribed imigran, which i purchased. i got home feeling aweful and took the 10 tablets , had a cluster headache later that evening , woke up the following day and just knew that i was on the mend , its been 4 days , no headaches . thank goodness for modern medicine. my thoughts and prayers are with all fellow cluster headache sufferers, and yes lets hope you can all find the the correct medication , give mine a try , it really has saved me this time.
charles <charles@fardev.co.za>
durban, Kwazulu Natal RSA

I feel really lucky to have my cluster headaches under control, I take 150mg of amitriptyline every night before i go to bed and this usually keeps me on top of things, if i have a flare up then its usually because i have drank alcohol or got too warm and will then take another 150mg amitriptyline the pain then go's straight away. I started on 10mg of amitriptyline 24 years ago and have upped the amount as the years went by i'm now at the limit and will not be able to up my dosage any more. Imigran is also a great pain relief drug. I hope this helps other cluster head sufferers.
EMMA MARSHAL <emmamarshall973@gmail.com>
barnsley, yorkshire england

I'm a 63 year old male. I have been plunged into CH hell since 1982. The first diagnosis I received was sinusitis. I took all the medications for this and no relief. It wasn't until 1987 when my daughter was born that a neurologist saw me in the hospital and he asked me if I was feeling alright. I told him about the "sinusitis" and he told me that I needed to get to his office soon. I did and he diagnosed me with chronic clusters. Since that time I have tried every drug imaginable. I used Imitrex injectios for a few years but the feelings it gave me started to make me nervous. It did knock out the pain however. Once I was on a freeway and the pain got unbearable, I injected myself at 75 mph. I was told years ago that we outgrow them. I'm old enough to be over them. I'm a dancer and icer. Ice gives me some relief. I got that idea in 1991 when, at the Headache Clinic in Ann Arbor Michigan, a man was sitting there with a homemade ice pack covering his head. I still use the ice when the pain is unbearable. I currently am taking 50mg sumatriptan. It is good, not always the fastest working but it does give me relief so that I can get a few hours of sleep. I have been through remissions and reoccurences. I am thinking of trying the Vitamin D regimen. From what I have read, there seems to be great results. I will talk to my doctor at the end of the week about his thoughts.
Michael Laituri <mrmick50@hotmail.com>
Reseda, Ca USA

Just wanted to post that my husband had chronic clusters for 10 years, was on topamax depokote imitrex and a whole bunch others. He took himself off all of the meds about 4 years ago and started eating organic only and quit smoking he has not had 1 cluster since! Please check the foods you are eating no one knows what causes these things and it could be GMO's or artificial preserves, coloring etc... Organic has changed our lives as well as cured my mothers ulcerative colitis. We feel that once you start eating the way God intended food to be produced the body can utilize the food properly instead of spending everything it has fighting the poison of the artificial foods. Thank you for reading and GOD BLESS!
Cristyn <Tcxi@sbcglobal.net>
St. Clair Shores, MI USA

Had my First CH when I was 21, working two jobs, going to college full time, playing on multiple soccer teams. I thought it would never go away and as soon as it arrived it left. It didn't seem fair then, at the peak of my youth trying to get into nursing school. Needing the straight A's to even compete with others. Fast forward 6 years I'm finally a nurse working at a cancer hospital in the ICU. I've just relapsed and 7 days in so far. I know the beast hasn't peaked yet because I haven't fallen on the floor in the fetal position yet crying and/or screaming. I just started my training for an Ironman a month ago. Timing was never my thing I guess. I'm definitely more optimisitic this time around. Not because I know it's going to be less painful, but because I know at some point there is a finish line. I know this pain is temporary, and someone in this world has it a lot worse off than me; their pain or situation has no finish line. -Ferris
Ferris <bueller88@hotmail.com>
Long Beach, ca USA

Hi! I started getting clusters when I was 13 and suffered for many years before getting diagnosed at the age of 24. It changed my life to have medication to manage the pain. When I started working I would literally go to the toilet to inject myself with imigran before coming out half hour later to work feeling dizzy and nauseated. In the last 5 years I have managed to learn to control my clusters. I had a very bad episode that lasted about 6 months and then post that I have not had any clusters since. Whenever I feel the onset of a cluster coming on (this has threatened to come twice in the last 5 years, I have managed to yoga breathe myself out of the threatening headache. I basically will breathe deeply to fill my stomach to a count of 8 and then back out again. Make sure your tummy is extending and not your chest moving. It has changed my life. I have found that so long as the cluster isn't triggered that I can hold the clusters off. I used to have a cluster once every two years and at its worse down to once every 6 months. Suffered it for close to 30 years and hoping I have now learnt to manage it.
Lynn
Malaysia

I am 63 & was introduced to the Beast 5 years ago, Jan-Mar is my cycle. Mainly from 7:00-11: p.m.1.5-3 hours. Two weeks ago I started getting 3 or 4 night 15-45 min. Crazy! and I don't understand the change.
Carol Parisi <cparisi32@hotmail.com>
Boise, ID USA

I experienced my first cluster headaches when I was 10 years old. Clusters would usually linger for about 3 months and remission would last a few years until my last lull that extended a full 20 years. Unfortunately just before Christmas they have again taken hold of my life. I was hoping that after 20 years medical science might have made some advances but unfortunately this does not seem to be the case. One improvement is this site and I thank those that have put it into operation. My headaches have started mild but have been increasing in intensity every few days. Doctor prescribed Diclofenac Sodium twice a day but few headaches have still burst through. I'm seeing a Neuroligist next week. I've been very lucky so far but I dreed what is coming. I swore if I won the powerball I'd donate millions to find a cure... Alas I didn't even get 1 number! 😳 Maybe next time! God bless.
John Gruber <candjgruber@verizon.net>
Gillette, NJ USA

hi everyone iam 49 ys and have been suffering the beast since age 21.iam in the beginning of a cycle now 5 days in.iam on oxygen and zomig nasal spray 3times aday as thats how many attacks iam having.with the above cocktail it takes between 5 and 25 mins to kill the beast works well.but the pain is so bad in the 25 mins i could kill my self.i had better pain tolarence when younger but after fighting the beast for28ys its broken me down
ali <sultun@hotmail.co.uk>
london, uk great brittan

I just got diagnosed with Cluster Headaches. Still not sure exactly how to react to the news. I just turned 21. I hope they go away!!
Turner Lotts <turnerlotts@yahoo.com>
Chicago, IL USA

Hi I am 57 and been a CH for 32 years now It is now day 32 into my cycle I was wandering if anyone has heard or tried vitamin D3 10,000 iu a day as a blocker of these unbearable attacks. I am desperate the verapamil doesn't seem to be doing it for me I am having 5-6 attacks a day and have hit my breaking point 3 times in 32 days don't sleep much and not eating well rarely I even leave my yard. Thank God my cycles usually last about 77 days I don't know how you chronic sufferers do it my last cycle was 19 months ago and lasted 24 weeks it was hell and I lost my job of 27 years due to missing so much work.Good luck to all I wish all of us a good day Doug L New Castle Pa USA
Doug L <dogcat4498@gmail.com>
New Castle, PA USA

I had my first bout with the Beast in 2005 when I was 19 years old. It's usually an 8 to 10 week fight that consist of 1 attack a day lasting 2 to 3 hours around the months of February and March. I pray one day I give the Beast that knockout blow it very much deserves to finally end this fight for good!!!
Matthew Nelson <46cheshire@gmail.com>
Keokuk, IA USA

Its been a long time since i visited this site. For years it was my only comfort. Some how it helped to feel i was not alone in what i was suffering. I suffered for 10 years with severe cluster headaches. You name it ive tried it, all the cures and reliefs. From injections to tablets from specialists to quacks. finally i can say im cured. I attended a neurologist in ireland who was originally from eastern europe. He was recommended by my south african gp. He put me on istoptin sr perlonged release tablets. I took them for a few months and then withdrew from them. Ive never looked back. Its been about 4 yrs now. No more headaches. I hope this might help someone.
Bryan Brady
cavan, ireland

hi everyone I am new to this site I am 57 and have suffered miserably for 32 years with these CH's I was finally correctly diagnosed in 2005 but I have had my fair share of frustration with doctors and especially ER doctors that have no clue to how brutal these monsters are. I had one ER doctor tell me I was making this pain up because no pain could possibly be that bad unless it was a brain tumor. right now I'm in day 22 of my latest cycle and I'm getting 4-5 attacks a day ranging from 35 min to 150 min the beast loves to torment me at night right now he has me at the point I'm afraid to go to sleep I'm down to my last Imitrex
Doug L <dogcat4498@gmail.com>
New Castle, PA USA

Cluster Headache *Cluster Headaches My name is Sean and I wanted to start a blog for others having to deal with this never ending nightmare called **Cluster Headaches. To tell you a little about my story and living with cluster headaches on a day to day basis. I m 39 and it all started last December when I went in for surgery on my esophagus and also on my stomach. This was a surgery that I had been putting off for a few years. After dealing with a multitude of other health issues. So I finally decided to go ahead and have the surgery done a few days before Christmas. Granted this was going to be a somewhat major surgery. I was only going to be in the hospital for a couple of days. Knowing that I was going to be home for the holidays to recover. I was looking forward to getting this done with. The procedure went well. However as soon as I was out of the surgery and coming out of the anesthesia I had developed some of the most excruciating pain that I ve ever dealt with. The doctors were telling me that I had developed what they think was called **cluster headaches. At this point I had never heard of cluster headaches before this. The drs. had no idea how I developed this condition after this procedure. Being that the surgery that I had just undergone had nothing to do with my head. All I knew was that I thought that there had to be something in my head. It was trying to dig its way out of my head. Always on the same side just behind my right eye. I ended up being in the hospital for over a week as I had a complete work up done. In efforts to try and find out what was going on. My life was never going to be the same. As after test after test was coming up with no solution as to the cause to the problem. I had met with the top neurologist in the area. They said that there no cure but we can try different procedures to ease the number of attacks. Well after countless procedures, I m still dealing with this never ending nightmare on a daily basis. We know that this is a rare conduction. I m just hoping to find others that are dealing with this same nightmare to be able to talk to and share stories about dealing with these headaches
Sean Ka <seanka123@gmail.com>
Mount Morris, NY USA

Hi, I have had clusterheadaches for 12 - 13 years. I, like lots of you went undiagnosed for way to long. Caused myself unbelievable rebound headaches to the point of seriously thinking of taking my own life. Finally, finally diagnosed and prescribe 100% oxygen at a high rate along with Lidocaine nasal spray (gross but hey, desperate times right?). I actually told my entire story but could not post for some reason. So, trying again and hope this will go through. Even though I couldn't post my whole story, it feels soooooo good to be able to type this out knowing the folks that read it will actually have a clue about what I'm going through. God bless you all!!
Lori Fagg <lorifagg@yahoo.com>
Chilton, WI USA

Hi my Name is Brian Clark from Scotland,I have been Chronic for 13yrs now had every drug, O.N.S.I. GNOB blocks, well you know the rest, because of where, I live, I am classed as medically & surgically Intractable Chronic Cluster Headaches, every day I look for an answer, and I am so used to the meds, like amatriptalien etc, I cannot even well we have all thought it. I am either a wild angry animal, or a suicidal maniac, my family live in the shadows of life not knowing what will happen next. Thanks for Listening
BRIAN <mako2107@yahoo.co.uk>
ERSKINE, UK

Im am 51 years old and have had clusters since I was 15
James Dusek <kb5rir1@yahoo.com>
sherman, Tx USA

My name is Ozayr and I live in Cape Town, South Africa. I am a chronic cluster head since 2012 and been battling the beast for just over 13 years. This is my story At age 20 I awoke at around 4am with the worst pain ever. I took some painkillers (in vain) and eventually got back to sleep. When I awoke it was as the pain never happened. I moved to London in 2000 and the following year at age 26 I started waking to this curse of a headache. The headaches occurred throughout the day without warning. I would eat and get a headache. I would shower, exercise, play football and practise kungfu and get a headache. I would be at work and have to get my head under a desk in fear of being noticed. I was fortunate enough to have a considerate boss that would send me home but advise these things can t continue like this. There were days I would bury my head in snow and place my head on the icy pavements for relief. I have banged my head through the wall (literally, as they dry walls). I have thrown friends, people and anyone else that was in my way, out of my way. I changed my diet. I stopped clubbing/partying, smoking cigarettes and smoking weed. Stopped pills, acid, cocaine, speed (and all other recreational pleasures) and these freaking headaches wouldn t let me be. I used to storm into Emergency section of hospitals and they would tell me I am crazy to experience such pains. MRIs and xrays turned out negative. At this stage I was on zomig and one day in less than 3 hours I had swallowed 9 tablets with no relief. I was told to seek alternate therapy. I questioned and was given the answer of Chinese medicine, acupuncture. Well I tried it and besides the foul smelling herbs I was given to boil and drink the pain just got worse. I took some time off work so I could get over the headaches or whatever they are. During this time a friend wanted mushrooms and having green fingers I said I would attempt to grow. So, I grew shrooms and about 2 weeks when they were ripe for picking I was told to sample and see if they work. Well I did more than sample because as time passed after the 1st few I realized my headache is gone, as in GONE! I continued to munch on them and smoked a joint NO Headache. For the next few years in London I got back to my normal self, working, clubbing, partying, eating mushrooms and acid (amongst others) weekly. (Note I had no clue of clusters and the benefits of LSD. Mushrooms etc.) I was just a weekender and I quickly forgot about the pain I struggled with prior. I returned to Cape Town, South Africa in May 2005. In July 2005 the bitch of a headache started again. I thought (believed) my headaches were over and only happened in UK due to cold climates. I visited the Dr and by the time I got to him the pain had subsided/passed. He advised I come to him immediately upon the start of the next headache, which I did. He advised it was migraine. From that day on I treated my migraine with Migril (ergotamine and caffeine). He found it strange the frequency and severity of the attacks. Migril works and within 20mins the pain subsides if not disappears. Problem is I was taking 4 to 7 tablets a day. I also would take 1 before I slept at night and 1 immediately upon waking in the morning. These attacks would go on for 3-6 months and at most I would get a 1 year break. In 2008 I moved to Durban thinking the headaches would no longer exist. Durban is hot and humid most of the year round. I started experiencing the most intense headaches while living there. After each attack I would literally pass out for about 40 minutes (at most). I would think nothing of it. In 2010 I got married and all was good. I was headache free until late 2011 when the faeces hit the fan. My wife would see me collapse in pain, screaming and howling before having seizure like and fit like behaviour. I would go to Emergency section of the hospital and they would pump me with morphine. They couldn t understand how after 2 doses I could still get another pain attack. My GP (at the time and an idiot) would sit with me and his journal trying to diagnose. He got it right and for the 1st time I heard the term cluster headache. The idiot knew I was on Ergotamine and then prescribed Verapamil along with Tripeline (25mg). He also added some blood pressure tablets to the mix and it was this cocktail that gave me my 1st heart attack. A week later I had another. I was also given Maxalt and asked again to try Verapamil. I lost most my hair (including body hair) due to lack of ciculation. What hair was left went grey. They messed up my vascular system. I aged like no other. My toe nails fell off and my feet were blue grey. Prior to this I was relatively fit. I mountain biked, climbed and could run up some of our mountain peaks. I then got referred to my 1st neurologist. He is a bigger idiot than the Dr. He did an occipital nerve block procedure when I asked him not to. He prescribed valiums and made my wife believe she caused my headaches. He believes clusters are self-induced and is a psychiatric condition, threatening to put me under anaesthetic as the only way to relieve. The long and the short is I managed to break free from the medical malpractice harness I was being wrapped in. In March 2012 the headaches stopped only to start again September the same year with no break since. I am chronic! I have returned to a Dr I was with many years prior to these manic days. He has been considerate and supportive. He worked with me, gave me what I asked for. Valiums worked but I was eating them like candy. Since the heart attacks I couldn t take Ergotamines. After some time my GP referred me to a neurologist. I am now on Lithium. I take between 1600mg to 1900mg daily. It has helped and speeded up my recovery from the previous medical mishaps. My hair is starting to grow again and the color is returning. My nails look like nails again (almost) instead of nut shells/casings. Lithium does work and does stop an attack well not quite! The headache comes on and just before the pain comes in I start feeling like my face is being electrified. I get the shakes; tongue is thick, mouth dry. During this time I rage and will kill anything in my way. This lasts about 30-40minutes. I then feel a cold sweat and flush like feeling. This happens up to 4 times a day. A good day is once! In the last year I started eating shrooms and they didn t work. I ate LSD and this too did not work. I started on LSA (morning glory). This works and I get relief for a maximum of 8 days. I have tried salvia and there s days it works too. I have followed the guides on cluster busters but unfortunately have no relief. I am lucky I have experimented with psychoactive plants in the past. It made it easier for me but at age 39 its hectic tripping out every week as much as you can to 12-17 hours (morning glory). Oh I laugh but I have a family. I have had to quit work through this time. I recently started work again but had to relieve myself. I await a medical note from my neurologist to list/state my condition and I should be good to continue and act normal. I have alienated myself from friends and family. I have chased folks away from my home. Those close to me that wanted to assist and help really have no clue. They say they care and invade! My dear wife has stuck with me throughout. When my head goes crazy she quietly disappears. Having said that she encourages me to find a solution. She recently introduced me to a childhood friend of hers who is a Dr. This Dr is a cluster head and so is her dad. Meeting her was overwhelming, disturbing, emotional and trembling. It is this meet that has pushed me to putting my story out there so others may know and get comfort that there are plenty of us around. We are not strange, off the wall and/or weird! (Ok we are) I also has a beautiful baby daughter of 7 months who dotes after me. I want to be better for her! It is coming winter in South Africa. At present I walk around in short sleeves as heat is a curse. I cant have a hot shower nor wash dishes. Food I am fine with and eat anything. Overpowering scents, smells etc. do my head in. My taste buds are shot and all I favour is chilli. There are days I snow food with salt and there are days the food is salty (when no salt has been added). At times I have supersonic hearing. There are days I have no emotion and feeling for life! I cant exercise and risk enjoying our beautiful outdoors. I pray for the day I am cluster free and will never wish this upon anyone good and bad!
Ozayr <ozayrlorgat@hotmail.com>
Cape Town, WC South Africa

Hi friends, I am from Argentina, 38 years old, suffering CH since I was 18. In my case oxygen works very good in most of attacks (sometimes it takes 25 minutes of 100% O2 at 12liters/min flow). And there is another countermeasure I am using with 80-90% of success: sexual activity during CH attack. Pain dissapears just few seconds after ejaculation. Did anyone try it?
Federico <fedebosch@yahoo.com.ar>
Buenos Aires, Argentina

I have had the most amazing cluster night of my life! It sounds stupid I know, I am 2 days into a new cycle, I've been very fortunate to have a full 13 months in between this cycle and the last! But this time I tried something different, something j didn't think would work but being that I am completely out of medication I really had no other option. PEPPERMINT ESSENTIAL OIL. I know I sound like a stupid care-free hippy but I swear it worked! And whatever works, right?!? I rubbed pure peppermint oil on my temple, forehead, and back of neck as soon as it started and in 5 minutes it was completely gone!!! No drugs, no sleeping needed, just the slight burn and tingle of peppermint. I have been eager to share this information because of how stupid simple it seems to me, all the time and money I have spent on medications and a freakin oil works better than any of it! Anyways I hope someone else can try this, for me it is a life saver!!
Faith Van Hofwegen <vanhofwegen.faith@gmail.com>
Upland , CA USA

just found this site and thought geez how`d these people know what what im thinking.had this problem back in 1997 -2001 when one doctor believed and gave me the meds to solve it unsure what it was now but they worked. now here we are 14 years later and the beast is back with a fury and vengengce untold only you will understand may god help us on the return.got new meds ystdy its predisone and imitrex injection i pray they work cause this is getting to be to much
jimmyd <jdm61814@yahoo.co>
cresecent city, ca usa

Well today is April 15, 2015. I am in the tail end of this round of attacks that started Jan 14th when the need for the Needle began. This morning at 5 am I injected needle number 277, yes I said 277. I am fortunate to have benefits that cover the cost of these, although I have had to get the doctors to write the script indicating that I need 6-7 injections a day as needed. I have had days where I needed 8 needles, that's 48 mls in a 24 hour period. The heart tests are already booked, and blood tests already have shown no noticeable organ troubles. My attacks started when I was 34 and I am now 52. I can remember where I was the first day they entered my life. I am just making my way around your website and like what I have come across so far. GREAT JOB!!!
John Downey <jdowney@mccloskeyinternational.com>
Peterborough, ONT Canada

Back at this live-saving website again after 2 1/2 years. I have a classic story like many of you: 42 yo healthy, normal life-style, but suffering from those since early 20s. CH then to space out with age, but the last 175 minutes of rocking and swearing in the closet chewing ice like a mad man this evening (what a way to relax on a Friday night with your family...) brought all those not so grateful moments of the last 20 yrs. Cycle has definatly began , and I tend to stress out even more when those happen in front of my children as they quickly perceive that daddy is not well. I will resume Verapamil 240mg which has been somewhat effective in the past( although it "slows" me down) . I am trying capsaicin application in the nose(not so effective so far), back to deep breathing exercises, been praying a lot since Easter, chewing on ice helps me, along with holding ice in my hands during attacks..and tonight , I would have eaten marinated cockroaches if that would be an effective cure to make that long one stop. Humour is always good in between the attacks...;) It is now a blessing to find so many brave suffers who are now posting their attacks on YouTube; That actually helped explaining my situation to a colleague at work. I do believe we need to leverage the social media platforms in order to raise awareness about this debilitating illness. Sincerely, my heart and thoughts are with all of you and yours. We will find a cure.
Martin Lemay <martin.usa12@gmail.com>
Lithia, FL USA

I have had these headaches since childhood( 3 years) I am know 62,I was told by neurosurgery hospital in london in 1995 that it was cluster headaches and was given various medications,I now have tramadol 100mg tabs but they dont help much,I get attacks approx 2 months constant then maybe 2 weeks respite,when I get the attacks they can last up to 4 hours,am I prescribed the right drug? Thanks tom
tom harris <339tomharris@gmail.com>
south ockendon, essex england

Been suffering with the clusters for 14 years. My special tip is to pack your head in ice packs and for real [slow down your breathing] 1 x icepack at the hypothalamus [base of head] and rotate the other ice pack to where the pain rotates itself around the side of the face ear temple above eye etc. Try to move as little as possible and think of something else. When the pain dissipates, you will all of a sudden feel the coldness of the frozen icepacks and know that you have passed the worst. Only the remaining hangover to deal with now. Another trick for me is to elevate my legs approx 12 inches higher than my head, as in a fainting position and this seems to speed things up for me too. Many years I have fought and rolled around pulled my own hair, turned upside down in extreme agony. Hope that I can help someone deal with the dibilitating problem. Prednisone was diagnosed by the neurologist for me 8 years ago and I only really had 1 painfree season. Winter. My current doctor has found out about taking steroids and has no understanding anything about the suffering we go through. I have a few Sone left and I am presently suffering 2 x 15 minute headaches every morning 4.45am and then again around 6.30am. Hope I can help someone cause its so hard to be reliable and I will not go anywhere without access to icepacks, Vicks vapour rub that I put inside my nostrils, Vicks inhaler too. Good Luck ya all xx
Dawnne <dawnne60@hotmail.com>
Ipswich, Qld Australia

Hello, any sufferers out there who go to a university/college/school? Please get in touch with me. I'm going to university in September and am worried about how I'll deal with my CH cycle while I'm there. Thanks
George <porgie021@yahoo.co.uk>
Birmingham , England

I've been a member before and had a lot of information and met a lot of really nice helpful members. since my time I've had a heart attack and recently a small stroke TIA but at least the headaches have retreated to the backgrounds. I know what I would prefer and it isn't the head banging.
colin <janeandcolinurwin@yahoo.com>
stoke on trent , uk

HiAll, 1st let me thank the creator of this site... I found this site t-day after getting fed up with my Cluster last nite... Ive had clusters since i was 20 Im now 53 and no end in site.. Ive been told recently by my Dr. that I now have Migraines to go along with my Clusters... Oh about last Nite ... Yea at work and the cluster comes on so strong I had to leave. My boss will be furious i lost a day of production for him. over the years Ive tried to keep it to a minimum mabey a few hours here or there. ive worked for the same Company for 30 years ... but this is a new Boss one that doesnt understand >>> I might be down graded a classifucation or two .. dont know!! Sorry Im just venting T-day... Enough of my self pity... On with some helpful insights maybe for anyone needing them.... Ive had these for 33 years ... usually predinsone will break a cycle .. ask for it... my self help remedies when the pain begins ,, hot water on a wash cloth on the effected side of the face I do it at almost burning levels at least as much as i can tolerate.. Arm twirls,, Arms lengthways out and make big circles and little circles and head loose and rotate loosing neck all together... evrey one seems to know the rocking so I wont go there .... I have done in the past some inner humming getting it to a pitch that i can feel soothes although that doesnt work like it used too anymore for me ... breathing into a wet wash cloth and exhaling as much as I can... maybe that helps with the oxygen getting in my system... Well thanks
Tom marshall <msleddogtom@gmail.com>
st.louis , Mo USA

Hello everyone!I'm Rob from the Netherlands. 49 years of age, married, father of four and "clusterhead" for as long as i can remember. I got this address from a good friend and i am grateful for that. First of all. I've got the need to share this message of hope: I've noticed a change in intesity and frequency of headache attacks as well as episodes, as i age! In my twenties and thirties me and my loved ones suffered the most. Fourtinately it never got me at the point of killing myself (although the thought crossed my mind hundreds of times). Now that I'm approaching 50, it is evidently that the pain and frequency are reducing. A coworker of my (and clusterhead as well) concluded the same for himself (he is now in his sixties). So hold on people. It doesn't have to be like this for ever! Maybe you will be lucky too! Since 2 years i did not had to use an injection with ik imigran. Oxigen does the job nicely combined with 3x120 mg. Of verapamil. I wish you all the best and: never, ever give up hope. Enjoy the painfree times to the max and fall back on the energy you obtained during that period. It will get you trough hard times. Personally i think a lot about my children when the headache hits. I consider it my mission to survive because of them. Cheers, Rob
Rob Hulzinga <rhulzinga67@gmail.com>
Waddinxveen, Nederland Netherlands

Hi my name is Trevor im 31 years of age,i live in south Africa in Durban.I have been suffering with cluster headaches(CH)for now 10 years,the 1st years i was diagnosed and treated for the depression,yes i know....the 2nd i just took grandpa and anything that will take the pain away.Then i was referred to a neurologist and it was him that diagnosed and started to treat me for the CH. i have now seen him for 2 years but the meds are still not helping,he put me on isoptan,eplizine,migril and prednisone to take everyday 3 times when my season starts and when i get the attacks i must use maxalt. Maxalt. These meds are very strong and my seasons last for a month or two normally around February to early April.This can damage your liver and kidneys if we continue taking this meds. I have heard allot of the use of oxygen and it works brilliant according to 99.9% of CH sufferers.I have just receive the script from my neurologist to obtain a oxygen tank to use.i will chat soon as i have used this and tell you guys how fast it works.WE has k now how the pain is and we want something that releases the pain fast.
trevor moodley <trevormoodley10@gmail.com>
Durban, South Africa south africa

Hello,great site,i am new to all of this,i have been recently diagnosed with cluster headaches,mind you it took a while before the doctors would listen,the hospital just checked me for meningitis and ct scan ,I`m sure you guys know the drill,i have no idea how long my bouts last yet,this is my first year,it was finally a doctor who was a replacement for my gp that knew what I was talking about,her husband has them.so now the trial of medications start,i am not looking forward to this,but better than the alternative,i have 4 attacks a day,and can pretty much set my watch to the first one every time the rest seem at random.i have never felt anything like that pain,its almost indescribable.great site great tips... at this point I need all thehelp I can get ...cheers!
Mike O`Donnell <bigdoggnx@hotmail.com>
halifax, ns canada

Does anyone have feedback on the effectiveness of Zipsor for CH suppression? I've tried it in place of my Maxalt when I didn't have any left and it doesn't seem to be worth taking.
PJ Bergen <pjbergen50@gmail.com>
Peachtree city, Ga USA

Hi I'm George, I'm 21 and I'm now into my third year of having CH's. I get them in winter, usually late January to early February. Reading some posts on here has sort of made me feel quite lucky in that I only get 2-3 a day for 2-3 weeks. Nevertheless they are the worst pain I've ever known and am ever likely to know! The first time I went to my local doctors I did my research on the symptoms I had, so I was pretty sure that they were CH and I also researched preventative methods such as oxygen therapy so I could mention all these things to my doctor; who then agreed that it was very likely to be CH's! The first thing the doctor prescribed me was 'Amitriptyline 10mg tablets' which are most widely used as an antidepressant, but other uses include prevention of migraines so I thought I'd try them, as I was willing to try anything to get rid of this nightmare! I've know been using these for two years as well as 'Migraleve'; but only for three days use as can cause addiction. But now in my third year I don't think 'Amitriptyline' is working so I'm going back to the doctors to talk to him about Oxygen therapy and 'Sumatriptan' injections. Can people give me advice and any info on these methods? And any other methods of course. Also any feedback on what you've read will be helpful! Thank you for reading!
George M <porgie021@yahoo.co.uk>
Worcestershire, England

my husband has cluster headaches. he tried all kinds of meds but the only thing that ever worked was high doses of oxygen. at the onset of a headache he would use the re breather oxygen mask for 10 to 20 min and the headache would be gone
Bonnie <blt958@yahoo.com>
flint, MI USA

Hi, I am 27 years old and have been suffering from cluster headaches since I was about 17. My cycle usually kicks in around September and ends around December or January. I am fortunate to only get 1 per day during this time. At first I had no idea what I was suffering from and had no idea how to treat it. After almost 11 years now, I have a good method to kill these things within 10 min of getting one. As soon as I feel one coming on I immediately take 800mg of Ibuprofen and use Afrin spray to clear out my sinuses. I always have severe inflammation on my right side. After the Afrin I blow my nose real well and use an ice pack against my nose and right eye. This method don't work 100% every time but I figured I'd share my method. I hope it helps some of you out there that may be just starting to get these or haven't found a method that helps.
William M. <wam24@yahoo.com>
Dugger, IN USA

My husband, John, has suffered from cluster headaches since his early twenties, he is now fifty three. Yes, he has his meds like imitrex, made several trips to the er, and we try our best to manage the devil, but I personally need help on how to help him more effectively besides getting him a cup of coffee and an ice pack, and yes right now in the fall is the season John suffers the most. Last year the whole month of December he suffered and lost a lot of sleep. I'm scared these damn headaches are going to take my husband. Cissy Crimm
Cissy <ceciliacrimm@yahoo.com>
Grand Prairie, Tx USA

Hi. I started having cluster bangs just after my 49th b-day and after having a mini-stroke. Since 2008. I'm in a chronic stage right now. Can't sleep, can't read clearly, forget numbers. I have read through some of this information & reading intensifies the headache when I am in a cycle. I take Verapamil everyday and during the summer that seems to help. But the winter is the worst time for me. I get night terrors the night before a series starts. Horrifying dreams that hubby has to hold me from bolting in fear. I am doing more research b/c I am trying to educate my doctor on this. Our local neurologists are worthless. And since we haven't had insurance I am stuck. So I will be asking questions. Thanks. I am so glad to have found this site & the facebook site as well. I will probably be more on that then on here.
Sharon <bics2010@windstream.net>
Jamestown, NY USA

I have been suffering from Cluster since 2000. My first cyrcle lasted for 30 days. Second happened in 2004 for 45 days. Third was in 2010 for 64 days. TOday I am in 60 day of 4th cyrcle.
Srdjan <srdjandjurich@yahoo.com>
Belgrade, Serbia Serbia

I've suffered from episodic CH's for 22 years. They have always came in the fall around Sept-Oct and last until January-Feb. I'll have 6-8 headaches a day with most coming at night after I fall asleep. O2 is the only thing that sometimes works. If the O2 fails its a long hard night of walking and head banging, scares my wife to death. It's nice to have a place like this where people actually KNOW what we are going through. Because there are no words to accurately describe "The Beast" You really just have to get in there and fight it to understand it. Thanks for listening. I'm having shadows as I write this...........
Todd M <tmaxey@fannincoapd.net>
Telephone, tx USA

God Bless all of you out there for sharing. I know all of you from your pain. We must keep trying as I believe there will be a cure in my life time. One must Hope
Paw Pretzsch
carmi, il. USA

Dealing with the beast now. One of the more fortunate ones who has been eposodic. Yes, intense pain like no other, but I see many worse off than I have been. In the past 20 years I have suffered 4 cycles, three of them lasting a couple of months and the fourth, well, still in it on the third month. I have seen so many on this site that haven't had the long breaks between. they have been debilitating and life changing while going through them, but after only finding this site a couple weeks ago, I am better equipped to manage the beast both physically and mentally.
Don Brunetti <dbrunetti@lkqcorp.com>
Meriden , cT USA

Hi, i was diagnosed at 21 and now 46. From reading other sufferers messages, it seems i have a mild case of CH, and i always thought mine were bad !! Mine usually only lasted for about 3 days at a time. My Doctor had prescribed me Propynol (taken one a day for a month after attack)and Mygralieve painkillers. I normally only have one or two attacks a year but i have'nt had one now for two. Unfortunately my last attack lasted 3 weeks and now i have progressed to liquid morphine for the pain and a self-injection for the headache. Sorry but i can't even remember the name of it! Anyway thanks for the chance to say my piece, this is the first time i even realised there was evena forum out there. I don/t normally talk about my CH as nobody i know have evev heard of them & only those that have seen me have an episode even believes they exist !!!
ian <superprez83@gmail.com>
Plymouth, Devon UK

Hello, I have suffered with clusterheadaches since I was twelve. I am in the midst of a cycle right now.
gillian alessio <kalessio10@gmail.com>
santa fe, nm USA

Please copy and paste into Word for better reading as the stats unfortunately do not read to well in text string format.!
Mark Gummerson <m.gummerson@btinternet.com>
Hereford, UK

This is an extract from the letter I have sent to my MP Jesse Norman yesterday. This is my first post to this site despite knowing about it for many years. I hope that this can be of some help and comfort to other fellow sufferers. During your visit I mentioned to you that I suffer with an illness called Cluster Headaches, one that I have had since my early teens, so for approximately 30 years now. Cluster headaches are a form of headache that comes in clusters. You have no idea when they will start and no idea how long the bout will last. The Pain is excruciating and you want to harm yourself to the point that if you had a gun you would probably shoot your head off. Please believe me, that without my wife and children I would not be writing this letter as I would have already left this world. The only accurate part of the term Cluster Headaches is the cluster part, as the word headache suggests an achy head. There is nothing achy about the pain, it is seriously intense to the point that the headaches are more commonly known in the US as suicide headaches, which in fairness is what they should be referred to as. The pain affects one side of the head; mine fluctuate from one side to the other but not mid bout. Since 29th June 2011 I have recorded each headache and now have analysis of the last 4 bouts. The most recent bout I was in during your visit and since 29/06/11, I have had 659 headaches (please see below). As with all headaches there are certain triggers that can bring on an attack sooner rather than later and also increase the severity of the pain so steering away from these is a must, (Alcohol, Chocolate, White Onions, Green Apples, Nuts, White Bread, Milk - to name but a few). I do worry how I will be able to physically and mentally cope as I enter the next 30 years. When they started, I was at home with Mum and Dad and on a Sunday we would invite friends over to watch a video! The room would be in darkness and I would be in excruciating pain in the corner of the room in a chair on my own, in tears and at the end of the video my friends had no idea what pain I had gone through because I didn t tell anyone about it. I would like to establish what research or development is currently underway to establish whether a cure is likely. I have been constantly told that there is no cure and not likely to be. I have had an MRI scan and visited two Neurologists over the period. On the onset of an attack, I have to immediately take a tablet with as much water as I can take on board and put on my oxygen mask at full blast, in hope that I have reacted quickly enough to abort the pain. Even an attack that last 15 minutes is 15 minutes too long. Some can last 1-3+ hours. Analysing each headache has brought about some significant findings for me to better manage my pain and relief of pain. When the headaches start they usually start with one a day and the next one arrives at exactly the same time the next day. Then they build in number per day until they peak at 8,9,10 per day. Then you know you are hopefully over the worst and then they drop off in quantity per day until the final day arrives. Ignoring the pain, clearly 8/9/10 a day is one every 2/3 hours so little respite, constant pill popping, constant comfort breaks and little or no sleep for days/weeks. I have tried every type of pain relief but now I am probably taking the most effective for me which is Imigran both Nasal (20mg) form and tablet 100mg, along with medical Oxygen. The service supplied by the Oxygen provider is FREE and is second to none and due to the nature of the illness they know to make special allowances for sufferers i.e. order today, delivery tomorrow whether it be Sat/Sun or a Bank Holiday. I cannot believe that for the rest of the medication I have to pay for it and others with other forms of illness e.g. Diabetes they don t. It doesn t just affect me, it affects my wife and family too. I now have 3 children asking me how my head is, as well they ensure I have water and my tablets with me if we leave the house. Unbeknown to me, whilst on a recent Break to Minehead and during suffering a really bad attack my eldest lad Richard aged 5 just, was so upset to Mummy after seeing his Daddy in such excruciating pain and my Mother is too afraid to ask me where I am at with them i.e. in between bouts and during. As you will see from my analysis that the headaches can arise at any time of day and those that awake you from your sleep are potentially the worst as you miss the initial feelings that you have, warning you that one is on its way. You don t even have seconds to react. Occasionally the pain is so bad I have asked my wife to cut my head off, something that is not said lightly, let alone to your wife. I am intense pain, in tears walking from the attic (where I suffer in silence) to waking my wife on the next floor down walking like an old man to lightly tap her leg to wake her from her sleep to come and sit with me and ensure I am taking as much water as possible in hope that the pain quickly subsides that is until the next one decides to come. To sit on your own is too much to bear, just having my wife with me, (not touching though as too painful) helps me feel less alone. Analysing the headaches as I have, means that you can track and know roughly when the next headache is due.. 4 per day means every 6 hours not 6 hours after the one you have just had but 6 hours after the initial onset of the one you have just had. All of this knowledge you do not just gain, it has been gained from recording each one as and when they come. To me it is just as important to record the time of the attack as taking the tablet because it is your pre-warn for the next attack. When I came across this web site Clusterheadaches.com I was in tears reading some of the comments and would urge you to take 10 minutes out to review. I have also provided two links from the NHS website.. 1. http://www.nhs.uk/Conditions/cluster-headaches/Pages/Introduction.aspx. 2. http://www.nhs.uk/Conditions/cluster-headaches/Pages/Symptoms.aspx Bout Start Finish Total Duration (Days) 1 29/06/2011 10/08/2011 133 42 2 16/12/2011 02/02/2012 178 48 3 28/09/2012 06/12/2012 198 69 4 11/08/2014 12/09/2014 150 32 659 Hour of Onset 1 2 3 4 Grand Total 0 10 7 26 10 53 1 5 9 11 5 30 2 5 4 4 3 16 3 1 7 7 6 21 4 9 8 11 8 36 5 4 8 8 12 32 6 7 15 17 10 49 7 5 7 6 8 26 8 4 14 6 2 26 9 4 7 9 3 23 10 6 3 6 8 23 11 5 4 3 6 18 12 4 4 8 2 18 13 6 9 8 8 31 14 7 9 8 3 27 15 5 8 4 9 26 16 8 7 6 5 26 17 4 4 4 5 17 18 1 5 5 3 14 19 4 10 10 5 29 20 11 7 7 10 35 21 4 7 8 7 26 22 3 9 4 3 19 23 11 6 12 9 38 Grand Total 133 178 198 150 659 We have to raise awareness; people cannot continue to suffer like this. This is real pain that has been written about in the medical journals as the worst pain known to man and much worse than childbirth, clearly something I cannot vouch for. If there is anything that you can do to raise awareness or establish the level of research that is being carried out. Or if my experience / analysis would be of use to others in their quest to better manage this type of pain then I would be only too happy to meet or talk to other fellow sufferers. I very much look forward to your comments. Kind regards Mark Gummerson
Mark Gummerson <m.gummerson@btinternet.com>
Hereford, UK

Hi All! I came across this site a little while back when researching my condition and found it very helpful. It is so nice to have somewhere to come and learn so much, so thank you. I have been suffering with CH/ HA since 2008, but have only recently been diagnosed with CH from the National Migraine Center, based in London. I had been suffering with many -attacks daily, with a permanent HA daily with Kip of 7-10/10. I tried all routes via our NHS and unfortunately they said "complex migraines" but what a relief to finally get a correct diagnosis 2 weeks ago. The Doctor I saw said that I have Trigeminal autonomic cephalalgias and paroxysmal hemicrania continua (hope I have spelling correct!) I am still off work (3 months) as the attacks have not gone away (7-10 per day). I am using amitriptaline, topirimate and sumitriptan injections (imitrex) + paracetamol and naproxen(although I have to slowly reduce any pain medication as I was classed as over using them - not surprising really considering I had nothing to control the immense pain I have been in before the injections). My doctor has yet to prescribe the O2 but as soon as he has seen the report from the specialist he is happy to look at that, fingers crossed we are finally getting there. It is a huge relief to get a diagnosis, but taking matters into my own hands was the only way to do it. Hopefully others out there may also benefit by NMC. I wish anyone suffering with HA/ CH the best of luck as I understand/feel your pain.
Jon Comerford <jon_comerford@yahoo.co.uk>
Dover, Kent

Wow this site is amazing, what an absolute Godsend!! Thank you to everyone involved, creators and participators! I have learnt so much in just one day!! So many tips, shared knowledge and experiences have kept me sane(ish)... I am 46, married, 3 'mostly' grown up kids, supposed to be working full time (been signed off sick for 2 wks). Had first migraine aged 10. Not quite sure when CH's started - about 5 years ago at a guess - neuro said I was having lots of bad migraines - 3/4 per week and daily headaches in between, this just kept getting worse though. I'm currently on day 12 of not being pain free ( although today is my best day, I've kept off the sumitriptan and had my first ever shots of energy drinks - as per instructions on here!!) and after my son researching for me went to the GP last week armed with information about CH's. She has since given me oxygen once, sumitriptan injections and send me to the EMU for CT scan (concerned about the clear fluid leaking from my nose)-they also gave me oxygen when i told them i was having a CH.. I have been referred back to neuro and am going back to GP to ask for O2 on prescription after reading about it on here...THANK YOU!! I also need to buy all the vitamin/mineral supplements too and when i am feeling brave enough maybe look into the other 'natural herbal remedies' as well:) wishing you all lots of luck in your quest for pain free days and nights :)
Toni <evoxtoni@googlemail.com>
Nottinghamshire, England

Suffered since my 20s, diagnosed in my 30s. I used to have a cycle of 5 weeks (2 or 3 attacks per night) that came every 18 months. Lucky compared to some. I hadn't had a CH for 8 years. I assumed I had "grown out of them" in my 50s, I turn 60 in a couple of weeks. They are back. I've had such a hard time actually explaining to my doctor out here what a CH is and how I need pure oxygen, not self generated, and a regulator that reaches at least 15. 5 days/nights into this and I have what I need to, barely, survive. Last night, running two oxygen generators (like trying to sleep in a wind tunnel) so that I could, in theory, get up to 10 lpm, was a disaster. Oxygen, in a tank, along with, for me Advil, taken the instant a CH appears possible is the only thing that makes these survivable. Anyway.. found this site years ago but thought and Hoped I wouldn't be back. It is such a help to know I'm not alone.
Ivo Russell <iswr@earthlink.net>
Lamy, NM USA

hello all, I was misdiagnosed with migraine 25 years ago and have only just realised that infact it is cluster headaches that have nearly ruined my life in so many ways. It would seem that CH are seasonal for many. I have a theory that mine are not just seasonal but directly related to sudden pressure changes. Seemingly when the pressure drops or a weather front comes in. Please would some of you indulge me and take note of your attacks and the weather and pressure changes. I know this knowing does not cure our CH but if i am right it might help to come to some sort of explanation and therefor some advances in treatment. i also note that extreme heat can also trigger CH, maybe thats because the heat changes the internal pressure around out nerves. Only theories, if you think theres anything in what I have said or feel i am repeating what you guys already know feel free to get in touch. P.s sorry about my punctuation and spelling.
Rob <Coreywebster28@hotmail.co.uk>
York, England

Hello. My name is Rebecca. I've been suffering from Clusters for approx 30 years. I finally started surfing the net, trying to find people like me & my family. They TRY with all their hear & soul to understand the unimaginable, excruciating, evil pain of clusters. I am desperately in need of a support group/family who truly comprehends this monstrosity. I am a proud Mama of 8 beautiful children. 4 are mine (2 girls, 2 boys), however my oldest son past away in July 2012. My husband's children are also 2 girls (twins) & 2 sons. Although I am not my husband's children's birth Mother, they are all my children. All are grown except my (our) 15 year old son. I work cleaning houses & offices & drive a Sweeper Truck At night 3x/wkly. I've chosen house keeping due to the leniency of my hours due to these horrific clusters. I advocate and rescue pitbulls & Bull Breed doģs, help train them, care for them and also transport them to what we call their "Furever Homes". Anyway, that a little about myself. I am searching for cluster support. Mine have been getting worse. I'm taking 100mg Imitrex and and now having to take a 2nd 100mg Imitrex to get relief. I'm also searching for great Neurologist/Neurosurgeon. Among several health issues I have, one is Chiari Malformation. Where the base of your skull is to small so that part of your brain gets squeezed into spinal column slightly. I apologize for rambling on. I'm so happy I came across your age and I surely am looking for fellow cluster friends. Sincerely, Rebecca S. Shepherd
Rebecca Shepherd <onlynurdreamz71@gmail.com>
Lima, OH USA

Hi, my name is Brett I have been an episodic clusterhead for the past 15 years. My latest cycle started 12/5/13 and last 5 weeks then I had 5 weeks off, for some reason they came back and have been with me for the last 5 months. The reason I am posting is to tell you about something that I have stumbled upon called Cellfood. It has cut the number and severity of my attacks in half. For example I have gone from 3 E tanks a week to half a tank a week. Also gone from being woken up 3-5 times a night by the beast to sleeping through the night and WOW what a great thing that is!!! Cellfood can be bought from your local vitamin shop from around $30 or you can buy in bulk from amazon for around $20 a bottle. 1 bottle will last approximately 1 month. For more information on Cellfood you can google it or there is an 8 part Youtube video explaining the uses and benefits of Cellfood. I know its only been a little over 7 days that I have been using Cellfood but not only has it helped with the clusterheads but has boosted my energy tenfold and my spirit is up as well. Cellfood works by oxygenating your blood which we all know how good oxygen is!!! Not sure if this is the answer but its good to know I have knocked some of the teeth out of the beast!!! I highly recommend trying Cellfood and hope other clusterheads have the same results. I have tried everything Verapamil, Topamax, even had steroids injecting into the back of my head (nerve blocker). The next thing the doctor wants to put me on is lithium which I am not good with. The good news is I have recently acquired MM and anxious to try the busting method very thankful to this website and all the good information I have gotten from it.
Brett Austin <brett.com66@yahoo.com>
alta loma, ca USA

Hello. I am so happy to find this site
scott
washinton, USA98310

Sufferer since 1985.
Jack Facca <jackcarrie1@sasktel.net>
Saskatoon, SK Canada

Hello my name is Henry and I am 22 yrs old. I was diagnosed with CH when I was 18 years old about 6 months after I started having them. Reading all these posts almost brings me to tears for many reasons.. To see everyone posting these things I have thought for so many years, how other people cannot understand this pain and how hard it is to go on every day knowing a living hell is just lurking in my head waiting to destroy us. But we fight through. I would gladly do anything for any of you and I welcome the contact. I would LOVE to have a conversation with another cluster sufferer it would be great to talk to someone who truly understands. I would like to share my methods of dealing with the headaches hoping it may help some of you if only in the slightest. Lithium 300mg 3x a day was effective for a time and I highly recommend it. For the acute attack I take sumavel dose pro (sumatriptan injections) these are wonderful and have a 100% rate of effectiveness (although it spikes the pain to its most painful point for the 10 minutes after the shot, until the headaches fades away) I also have oxygen tanks for use at 8+ liters (the more the better). I find that oxygen is only effective if caught in the 'shadow' stages but once you get into the real pain it's mostly just frustrating. My only other small tips are water and exercise. I read about the water treatment in this site. Whenever I feel even the slightest twinge on my left side I get to a sink ASAP and start chugging water til the feeling stops. This is a new strategy of mine but I find it fairly effective and very easy to do. My only other tips are exercise or sexual stimulation. These 3 things are only effective in the very early shadow stages. I hope someone will find this helpful and once again anyone feel free to contact me via email at farrhenry5@gmail.com - nothing would make me happier than to help a fellow sufferer! I love you all good luck
Henry <Farrhenry5@gmail.com>
Ridgeland , USA

I was diagnosed last week. 21 nights in a row. I cannot believe my heart can withstand the beastly pain. I'm so glad I'm not alone. Somebody needs to find a solution for all of us. It's inhumane the amount I suffer.
Chris vallee <Chrisvallee12@gmail.com>
Hallowell, Me USA

Hello, Been diagnosed with CH for 9 years now but suffered them a few years previous before being diagnosed. I'm a 50yr old guy. Not gonna go on about how it feels as we all know that. At present I see my consultant yearly. I get oxygen, Epilim and have had nasal sprays and steroids. All have helped at various times. My problem at present is an acute lack of oxygen. I get a 2' tank on request and at present am emptying this in 36hrs. My CH's are hitting with a vengeance and my provider is closed at weekends. They won't give me a spare bottle until they get the ok from my consultant in July 14. Anyone able to give me some advice as my local NHS are responsive on the phone but nothing is getting done. Many Thanks & Take Care Phil :(
Phil Matthews <Blmofe@yahoo.co.uk>
Preston, UK

Hello there. I wonder why I have never found this site before? But anyway I'm really glad I have finally found one that is dedicated to this monster we call CH. Although I really wish there was a better term to describe what we all feel cause headache is not a strong enough word to describe the gravity of the situation when "it" hits. I'm 30 now and I have had this problem since the second grade. Although back then they didn't know what to do for me since I was a kid. But suffering for 20 years now really takes a toll on you as a person and really shows pretty much what you are made of. I know not everyone believes in God but for me I believe He only gives us what we can handle, and that means the few of us who suffer from this are some real bad a$$es. The term of "suicide headache" is an accurate description indeed. But my will power is far more than even the remote thought of the latter. I know that one day we all will beat this. I too have tried everything since the beginning. All the preventative, abortive, and herbal remedies that I could take or that were prescribed to me. Sumatriptan is my Godsend. Those injections are magical. They do help with the immediate relief. My problem is that getting those are like an act of congress where I live. I really think the hardest part for me is that when I have to explain to someone I have headaches that are not normal, they just look at you like take a pill and man up.... Yeah that feeling... That is a hard pill to swallow. That judgmental crap gets to me sometimes. If you only knew my friend. Anyway always keep your spirits up no matter how hard it is cause you will break, I have. But I got back up each time, and that is the most important part. Keep going. Rant over. LOL. :)
Ryan LaReau <nazcula1941@yahoo.com>
San Antonio, Tx USA

I am now on my 3rd cycle of headaches. Been suffering from ch for 18 years. After the first cycle I went 8 years pain free. Then they hit again and lasted about a month.new doctor gave me relpax which worked great when attacks came on. But I hated waiting for the pain to come before taking the relpax. So I started taking a pill before bed and no more waking up with crazy pain. Then it ended and 4 years went by and here they are again. Im now not just getting them at night, but now im getting 3 a day. I switched over to sumatriptan because its way cheaper and still taking one before bed and its working good. No more night wake ups in killer pain. Still have a hard time catching them during the day since they come on so fast. I found that taking 2 800 mg ibp in the morning helps the ch not be so strong and less painful till the sumatriptan kicks in. Still waiting for this cycle to be over, please please go away. These thing alter my whole life. Everything I do everywhere I go I have to worry about getting a ch. I always carry 2 pills with me to work or wherever I go. I dont know what I did to deserve these things but DAM, I take it back whatever I did...lol. good luck to all the people suffering out there, your not alone.
charlie <charlieshaffer472@gmail.com>
newark, Delaware USA

Hi all. I have always wanted to keep track of the beast, and was going to do it in Excel, but when it came the computer was the last thing on my mind. But still I wanted to know when it started, and possibly know what triggered the attack. How fast the medicine worked and time between attacks. I tried some apps which I did not like, so I decided to create one my self. I am happy to share it with you if you think it might help you to choose medicine or just monitor the attacks. The app is only for Android and it does not cost anything. Iphone users can use the website. I hope the tool can help more than myself. http://paintimer.com/how.html Regards, Robert
Robert
Iceland

I am 29 and been living with Clusters now since I was 19. They cine on every other year and last for 6-8 weeks with 2-4 a day. O2 does not help that much, it seems to just prolong the attack. The only thing that works is the self injections, I get paid tomorrow and will start the D3 treatment. At this point I would try a Witch Doctor or voodoo dolls if I thought it would work. The only good thing I can say right now during this cycle is one of my twins thinks she is my doctor and she brings me a ice pack, turns my light off, kisses me, tells me she loves me, & shuts my door. That makes me smile as soon as the shot does its job. That's everyone in my CH family, hold your heads high!
Brad814 <brad.carden@lennoxind.com>
Douglasville, GA USA

Have your dr. prescribe MAXALT MLT. I have had migraine all my life, well since i was about 9 or 10. In the last 8 years i have become a victim of cluster headaches. Believe it or not these headaches are worse than migraine. My longest period was every night for 4 months. It is a living hell! I have tried everything! Last year my dr. prescribed Maxalt MLT and it worked! At least 98% of the time. The probem was that Maxalt was very expensive even with good health insurance. The good news is that there is now generic Maxalt availible. I am starting another go around of clusters as i right this and am very glad that there is a geneic Maxalt. I am paying out of pocket because my insurance company will only pay for 12 pills a month (bastards!) The generic costs about $2 per pill, much cheaper than the real thing. The unfortunate thing with clusters is that i have to take up to 4 of these pills a day! Thank God i have a loving wife who is there for my and that i have not lost my job yet. These things are the worst pain i have ever experienced and i would not wish them on anyone. Good luck to all you fellow sufferers... Tell your dr. about Maxalt MLT and the generics... Hope it helps you!
buddy <wmreily5413@yahoo.com>
brighton, co USA

I have suffered from episodic cluster headaches for about 8 years now I have been treated for migraines when I was able to see a doctor (lack of insurance) but just recently learned about cluster headaches and have never read anything that describes me more perfectly! I am currently 2 months into a cycle and I have found that drinking one of the extra strength monster energy drinks at the first feeling of a headache will shut it down within 15 min. It doesn't always work but 2/5 times it will. Hope this helps somebody. Thanks for the support!! Its nice to know I'm not alone
matt <matthardy1985@hotmail.com>
helena, ar USA

Have been a sufferer for 20 years now. First attack came shortly after the birth of my son. Imagine packing up your husband and infant to go to the ER at 3 a.m. with the thought that you are dying of an aneurysm and won't ever see them again (blind in my right eye to boot!). Diagnosed rapidly and have been on Verapamil ever since, along with Indocin and Imitrex as needed. I get migraines as well. Dread Spring as I ALWAYS get an episode regardless of the Verapamil. Don't fit the profile at all and my Dad got them as well. This site is a godsend.
Kathy <catcastle2@yahoo.com>
Essex , VT USA

Dear CH.com March 19, 2014 I posted on the site many years ago, probably in the late 1999 to 2002, I had cluster headaches like I thought no one else could. My left eye, nostril, ear would swell shut, one of the worst spells I ever had lasted for over a year. My neurologist put me on steroids after about 6 months of day and night clusters, one would stop and another would begin. One doctor put me on Thorazine (sp) because he thought I was making these headaches up and they were all in my head. Really, this actually happened. I went to the Scripps Clinic in, LaJolla, CA for treatment to get me off the steroids and get my system back up and working to make my own limited amount of cortisone that is naturally produced by our own bodies. The side effects of 85 mgs. of steroid were almost as bad as the Clusters. I started having these headaches when I was 12 years old, over time they got worse or I became intolerant to them, my first defense became cO2 from a welding tank, then after about two years my doctor prescribed it for me from a medical supply house. Many times cO2 would help me hold off a headache until one of the narcotic drugs could start working. Other times I would need to go to the emergency room for injections, then only after they watched me for two or three hours, all the time getting worse. Doctor DeLessio, MD. at Scripps Clinic told me that he had know people that out grew these headaches, of course I didn t believe him, every time I had a cluster I thought about what he said and wondered if it could be possible. Today I am free of those really bad ones, I do get a hint of one now and them but never a cluster, not in almost 15 years. Have I outgrown them? Maybe? I am now 75 plus years of age, that is 63 years of these headaches. I wonder if going into puberty was the cause and the lowering of testosterone in my older years had anything to do with them. I have always thought so. Great news for all is that maybe just maybe you will also outgrow them as I have. One more thing, I gave these things to one of my sons and two of my grandsons. Many of my family on my father s side either had clusters or migraines most of their lives. Thanks to my wonderful, loving wife that stuck with me through all this and was the reason I didn t go the suicide route when they were at their worst. I previously posted to the site about the use of Oxygen and also about my history, at one point I was active on the site and posted other messages. I can t seem to find those early posts or I would link them here. Good Luck to all of you and you re in my prayers, Dale W. Key
Dale Key <dvkey@centurylink.net>
La Pine, OR USA

I have been getting clusters for 15 years. I haven't had one in two years, until today. They are back!!!!!
jason milling <milling17@gmail.com>
windsor, on canada

I'm not really sure why I'm here. I was around the community when this site first appeared and provided some of the initial links and support. There is a light at the end of the tunnel. My condition tapered off to nothing but the occasional twinge as I got older. It's been 8yrs since I was chronic and 5yrs since I had a couple of episodic returns of the beast. Be well and hopeful my friends it gets better. Realistically it will get worse before it gets better. You may suffer frightening relapses but at 58yo I think this crap is history. Pat
Pat <psmallwood336@gmail.com>
Mary Esther, Fl USA

My name is Jerry and I would like to tell you about a product that has helped me with my cluster headaches. The name of the product is Juice Plus. It is not a prescription medication but 26 fruits, veggies, berries and grains in a capsule. I started having cluster headaches 29 years ago. As you know if you are reading this, there is not a worse pain known to man. I started having these horrible headaches at the age of 21. I thought they were migraines but later learned they were clusters at the Michigan Headache Clinic. My cycle was 6-8 weeks every 14 months. This headache cycle lasted for 17 years. Then for some reason my cycle backed up 4 months. The next cycle then also arrived 6 months late at 24 months. A friend of mine convinced me to start taking Juice Plus 4 months before my next cycle was to begin. The next cycle arrived another 4 months late. I now was on a 28 month cycle which seemed like Heaven! I continued to take Juice Plus for the next 28 months. I have not had another cycle of headaches yet and it has been 33 months. This is great news and I am thanking God every night. I recently experienced my 5th kidney stone and I told my family I would take one every day in place of a cluster. This tells you the pain I experience with a cluster. I cannot guarantee your results will be the same as mine but as a cluster headache sufferer I think it is worth your time to try this nutritional supplement. I also took all the meds prescribed by my neurologist along with oxygen during a cycle and I still have them ready to use. I buy Juice Plus from my friend and will not make any money from the sale of this product. I just feel sorry for my fellow cluster sufferers and would like to pass along any product that might help. As you know, as a cluster sufferer, that these headaches usually don't go away on their own. I think Juice Plus has helped me and I'm not going to take a chance of getting another cycle by not taking it. I take 2 Orchard Blend and 1 Vineyard Blend each morning; and 2 Garden Blend and 1 Vineyard Blend each night. I hope each one of you find something that helps. If you're interested in this product, you can contact my friend Roni Spressor at roni.juiceplus.com or by email at roni4juiceplus@gmail.com or call (479)220-9032. God Bless!
Jerry Larkin <n2sprts@cox.net>
Siloam Springs, Arkansas [AR] USA

It's the 25th day and I got less than 7 hours before the dance starts. Been to the ER, had ct scan, waiting on a referral to a neurologist from my doc now. This is my fourth cycle. The first three didn't last longer than 4 headaches over 3-5 days, thought myself pretty lucky back then. I knew they were cluster headaches since I googled the symptons during the first 5 mins of the first one. A hot shower helped the first round. Spent each of those first 4-hour headaches in a hot shower/bath and if I left before the 4 hours was up, I'd come running back into the bathrooms. That only worked then, hasn't provided even the slightest relief since the first cycle. First two cycles were right-sided. The previous and current ones are left-sided. The only thing I've found to work is 5-hour energy/six-hour power/etc, but these are breaking my wallet. The first two weeks of this I was paying $5-10 a day on those shots until I found knock-off brands and sometimes even the name brand for $1 at the dollar tree or 99 cents store, still costing about $3-5/day. Anyway I don't even really want to think about how much I've spent on this stuff in the last 3 weeks, well over $200. These only help, however, if taken during the shadow, before thebeast emerges. I still try waiting until I know I can't wait any longer before taking the shots, but I've been too late a few times and once the beast has arrived the shots don't help, might actually make it worse I'd say, idk. Also these only work during the day, when the beast wants to come at night nothing with stop him. I've begged God so many times to stop it, I've banged my head quite a lot lately, but I try not to. The only thing that works for me during a headache is pushups. During my dance, I do push-ups until Isimply can't anymore. I start when the pain's at a 9-10 and I find as long as I keep pushing, even when I'm at the point where I can only manage 3 per minute, the pain drops to about a 4-5 and doesn't go higher. Eventually I honestly can't do even one more pushup, and that's when I start punching myself in the stomach/chest and hard too! That's distracting, I guess. I've been thinking about joining a boxin training group a lot lately. It's 2:10 pm and I feel so lonely, except my shadow's with me, within half an hour I'll be in a HA. I've basically given up trying to explain it to anyone. I felt like an idiot for even wasting my time when the entire ER staff talked to be like I was making it all up. Triage nurse smirked and giggled at me and the nurse that dismissed me actually told me to try taking some aspirin if it happened again. Doc's referring me to a neurologist after they get the ct scans from the hospital but even he prescribed me some god damned excedrin migraine during my last visit after I told him that I knew it wasn't a migraine and would pass on any pain meds. The attacks havnt gotten any better, last 5 days or so its been 2 or 3 back-to-back HAs with maybe 180 seconds completely pain-free in between. I've had maybe two that lasted less than 2 hours since these started jan 31st. If anyone wants to talk, feel free to email me. I'd love any support I can get. Anyway the beast has come and I can't resist the urge to start banging on my head any longer.
Tony <travonmiller@live.com>
ca USA

Too much pain for etiquette. I am joshua. I cant take much more. My eye feels like explosions and my heart has palpitations from the intensity. Has anyone found help? I need help.
Joshua <saskiastar78@gmail.com>
portland, Oregon USA

Hi my name is debz i have been diagnosed with cluste headaches for sometime very low at the mo single ma to two lovely kids and have a job however off sick dibilitated by my attacks at the moment planning on not sleeping again tonight to try and get some reprieve hope yoiu guys are all staying strong and thankyou so much for this site
debbie
bath uk, uk england

Hello. I too suffer from cluster headaches. I have had attacks from time to time over the years, but wasn't officially diagnosed until a few months ago during a horrible episode that lasted 6 weeks straight with no relief. My hope for all are pain free days and nights!
Nancy <nancolpir@yahoo.com>
Bowling Green, OH USA

I've been battling episodic cluster headaches for 10 years now. Thank you to the organizers of this website.
Baris Tellibayraktar <baristellib@gmail.com>
Istanbul, Turkey

I am writing a blog about pain management and decided to write about cluster headaches, which my exhusand suffered from. I was relieved to read this, related to heredity: "it is uncommon to find other examples of cluster headache in the family history"
Joy <joy@webwriter4u.com>
San Diego, CA USA

Bless you all for this site! I have suffered with migraines most of my adult life. The day after Thanskgiving of 2012 I began having cluster headaches. The first round lasted over 30 days but sadly I was not diagnosed with clusters and continued to be treated solely for migraines. I have had episodic clusters monthly and since December 23rd 2013 have had anywhere from 4-10 episodes daily. I have finally found a neurologist that has diagnosed cluster headaches and is treating me as such. Oxygen to be delivered to my home. I am waiting for nasal Sumitriptan authorization and have started Verapamil. I am an RN and sadly, I deal with coworkers saying the dreaded "it's only a headache". No, it is not! No one but those who have experienced it seem to understand. I currently have no quality of life. I cannot drive for fear that I will have an "attack" and hurt someone from the inability to drive due to the intense pain. I am afraid to go to sleep for fear of waking in such severe pain. Thankfully, I am down to 4-5 episodes a day from 9-10. I have many praying for me and now I have this forum which makes me feel that I am not alone. Thank you for that. What a comfort it is to know that I am not going insane! Hang in there everyone. Will be lifting all of you (us) up in prayer!
Stacey <rnstac@yahoo.com>
Joppa, MD USA

it's just nice to know that there is real support out there for CH suffers. a message to all those who have created this wonderful site "thank you so much"! Scott
C. Scott Bruce <jedichef1966@gmail.com>
Mableton, ga USA

I have just recently been diagnosed with cluster headaches and am still going through the process of what works for abortives and treatments. This site has been very helpful in educating me in what to talk to my doctor and neurologist about.
Tracy Belanger <tracyannbel@hotmail.com>
Caroline, AB Canada

Ive had CH for 32 years now, Still hurts , but dosent seem to be as bad as it was when they first started, If it wasn't for Imatrex injections I wouldn't have made it Im sure.
Wayne Perry <wd.perry@hotmail.com>
Calgary, Ab Canada

This website is by far the best website for clusters. I was soo happy when I found it. I'm almost 18 years old and I've been suffering since I was 14 but I have just been properly diagnosed and trying to learn everything I can about clusters. And hearing about other people's experiences on this site is soo helpful and makes me feel like there are people who understand. Because there are so many ignorant people who when I say I have terrible headaches, just think it's just a headache get over it. Because it's really not. I'm so thankful that this site exists.
Marisa R <marisalynn1996@gmail.com>
Houlton, ME USA

Hello, my name is Rick, I'm 58 years old. I started having severe headaches when I was about 15 years old, and had them regularly until my mid 30's. Then they suddenly stopped. All the doctors I had seen said they were migranes, (because of a family history of them).Well in 2010, I started getting them again, but much worse than when I had them when I was younger. My family Dr. sent me to see a head, nose, throat, specilaist. Who after seeing me for the 1st time diagnosed my headaches as cluster headaches. We discussed the options for dealing with them, and as I have bad reactions to a lot of pain relievers, he suggested that I try Oxygen therapy. I started using it that very day and saw dramatic relief in the duration of the headaches, if I could catch one coming on and get to the O2 immediatley. It's a little different story if they awake me during the night, it takes a lot longer to get rid of them, but still after some time they will start leaving. I know I don't have to tell any of you what kind of pain that I go thru with them. As you being sufferers also, you already know, but for some odd reason it does give me some comfort knowing that I can have sympathy for you, and maybe you can have some symppathy for me. It's like were kindred souls that have never met each other. So my hope is that someday there will be found a cure for this awful affliction that we all suffer. Go pain free my friends and may GOD bless.
rick <rgreen55@hughes.net>
williamstown, wv USA

When I first visited this site I cried. The description of cluster migraines was exactly what I suffer, but no-one understands, I dont even tell people as they just brush it aside as a headache. I was about 13 when I experienced my first migraine, it was through the night and I remember thinking I was going to die. I was so releived when morning came and it stopped. They progressively got worse as I got older and from then until I was 25, I visited the Dr regularly to be told I needed my eyes tested,and various other diagnosis, I was once even prescribed valium (at 16 yrs of age), migraines were never mentioned as I was never sick and did not have an aura. I changed Dr when I was 25 and at last he said you suffer migraines and cluster migraines. It was such a relief to find a Dr who had an answer and sympathy. This was before the internet so no access to any information on them or anyone who suffers them. I was eventually prescribed beta blockers 24 years ago and have not had a cluster since. But still live in fear of them coming back. The feeling that banging my head against a wall would give me relief sums up the level of pain. I used to dread going to bed in case one came on. I sympathise with anyone who suffers but still wouldnt talk about them to anyone as who would understand.
Liz Brown <liz74@btopenworld.com>
Dalbeattie, Scotland

I am so glad I found this cite....my husband has suffered for many years and he, too, was told that they were migraines with cluster like symptoms. 10 years ago I researched and researched and came up empty handed. I always knew what type of headache he was having, but couldn't understand why they weren't calling it. He Finally, he found a good Neurologist, but still it is heard for people to understand. I appreciate reading anything that will help him...he is a very strong man and can take a lot of pain and for that I am very lucky....but I want to help him anyway I can. I wish I found this website sooner trust me. For now, I think it is mostly trial and error so I will post what works for him and hopefully will find something on here that he too can try. Good luck and Glad I found this!!!!!
Corrina <cpelkey2@nycap.rr.com>
Schenectady, NY USA

Hello, my name is Tyler, i'm almost 30 :S I have been diagnosed with Cluster Headaches by an ER Doctor and the more I research the more I have come to accept the fact that I suffer and I DO NOT have a brain tumor. My first bout with the Cluster Headache starting when I was about 24-25 years old. I was walking home from hockey and started to notice that my neck was starting to get real sore. Earlier that night I slammed into the boards real good and whiplashed my neck (I have a strong belief thats where my headaches originate) I got home had a HOT shower and BAM! the most pain I have ever felt in my life, I thought I was having a stroke, right side of my head it felt like someone was poking my brain above my eye with a nail. I called the ambulance and they didn't know what triggered it at the ER here in my little town. I suffered greatly for months and the doctors couldn't place it on anything. I went thru xrays on my head went for a CT Scan and nothing. My first bout with them I was prescribed Citalopram (serotonin levels) and Maxalt to deal with them. Prior to this prescription I had multiple visits to the ER, months went by getting shots of all sorts of painkillers and drugs in the ass, IV's, everything. It took about 1-2 months of taking the Citalopram and Maxalt to finally be rid of them, I was so HAPPY!!! :D thought they were gone for good. Now, it is 2-3 years later and at the beginning of DECEMBER, it hit me!...at least this time I had a diagnosis I researched and could accept. I have been dealing with it now for about 3 weeks, my NEW prescription is Carbamazepine (Anti-Seizure) and good old Maxalt, I maintain with Ibuprofen during the day on occassion. I have had more Xrays on my sinuses and another CT Scan which resulted in Negative findings, so yeah...these things suck! but I know I have a light at the end of the tunnel cause they will end, I guess I have Episodic Cluster Headaches, well at least I hope these ones go away. I seem to get them when Winter starts up here in Canada. I have high hopes for this Carbamazepine, I just started it today and I'm just getting over one, the pain was about a 3 on a 1-10 scale, I was told by my doctor cause I was skeptical about the pill "take the pill and be drowsy or take the pain" lol, so today I decided i'll start and I believe they have helped. Maxalt has always done wonders for my Headaches. Next DR appointment is in January and I am going to ask to see a Neurologist to look at my neck, my upper neck hurts and cause my muscles in that general area to bug me daily. Cluster Headaches have been the most painful thing I have ever felt in my life. I have visited the ER so frequently the past 3 weeks I thought they would have a present for me on Christmas night haha. When I head in they inject me via IV with Maxram, Tordoral & Gravol, sometimes it helps but I can always feel it...THERE. It doesn't always go away but lately that feeling has been subsiding so I'm hoping i'm on the tail end of this episode. I feel bad for you guys who have chronic headeaches and live with them for years...Quality of Life right? people don't understand that in the back of our minds when we do go thru the episodes that we burn so much energy worrying about "man do I feel one coming" "I hope I don't get one""I wish they would STOP!" I get mine before I go to bed or shortly after I fall asleep usually 1-2 hours after I fall asleep. My first episode with them the pain was always above my eye in my brain. This episdoe it has escalated abit, still in the same area with my temple are coming into play along with the back of my neck (where the neck meets the skull) and the side artery, ALWAYS right side. Mine are sharp pains, excruciating. Maxalt has always helped, sometimes they miss their mark but 8 outta 10 times they do the trick. I wouldn't mind talking to other people about their episodes and what works for them, thanks for your time :)
Tyler T. <sk8tr00@msn.com>
The Pas, MB Canada

GREAT SITE! VALUABLE INFORMATION. THANKS :)
Anniken Karlsen <annikenkarlsen@gmail.com>
Aalesund, NORWAY

I am a 35 year old single mother who suffers from cluster headaches. I was diagnosed when I was 15. I Hate this demon with a passion and pray for us all to have peace and pain free days always.This site is sometimes the only thing that keeps me sane and I am grateful for that.
Eleanore <epasquarella@yahoo.com>
Matawan, NJ USA

My mom had migraines. She was knocked out twice a month, every month, when I was a little girl. I can remember it clearly. Her headache would build and build until she actually threw up. Then she would feel better. So you can imagine, when I started suffering, I thought they were migraines. And some of them were. Hormone related. And awful. But there were times...times when I got a headache that was so painful, I was incapacitated. I mean, knocked out. I called these "full blown migraines." But I was wrong. When I went to the doctor and explained my symptoms, she ordered an MRI to make sure nothing else was going on. But she told me she thought I got cluster headaches. Why? Because the really bad ones ALWAYS woke me up in the middle of the night. 3AM. And the pain would be immeasurable. Behind one eye. Like something was stabbing me. And everything on that side of my head would act up. My eye. My nose would run like a faucet. Since I was in so much pain, I always think it's blood, but it never is. Just snot! Blind with pain and half asleep, I stumble down the steps and look for my Excedrin. I find it, take two pills, then pace. Back and forth, back and forth. Because the one thing I CAN'T do is lie down. The pain is then explosive. So I sit and rock back and forth. Or I prop myself up with pillows to try and close my eyes. By around 9AM, I can finally lay down again. By noon, I am able to function to a small degree, and I usually go downstairs to make sure I took the right medicine. I put it in a special place because I'm always so out of it, I want to make sure I take the right thing. But I always double check. By that evening, I'm doing better. My doctor asked me if I get another one the next day, and honestly? Sometimes, but NEVER as bad as the one before. And in my book, that's great. If I'm not out of my mind in pain, I'm good. I can handle an annoying headache.
Headachy Heather <mellow_yellow_23@yahoo.com>
Columbus, OH USA

It might not change my CH diagnosis, but this is the 1st time I've actually had proof I'm not the only person in the world with CH. Thank you for creating this website, it's very very comforting. Dear Mr. Michael Lunn - and anyone else with doctors who won't listen - you need to see a neurologist! Most regular doctors never heard of CH. My doctor refused to listen and made it very clear that I was lying and had to be mentally ill since I kept insisting it was real. He didn't even bother to look it up. Just told me straight off "no such pain is possible", and added a couple of rude phrases about my intelligence. He refereed me to the neurologist only because I refused to leave his office (not for lack of trying on his end) until he did something. The first thing the neurologist told me when diagnosing me (without knowing about my issues with the doctor who refereed me) was "Don't worry - you're probably been told you're crazy, and you're not crazy AT ALL. This pain is very real.". My heart bleeds for everyone who goes to the doctor with this horrible pain and gets rejected, because the (arrogant scumbag) doc is undereducated, narrow-minded or lazy. Or in my case, all 3.
Cate
Denmark

Hello. I m so glad this site is still up as I went to the message board and the last post was 2007. I have had cluster headaches for many years and have never met another person who could understand. I was misdiagnosed with Migraines for years and finally found oxygen a few years ago on this site. It has changed my life! My headaches start at 1-2 am every other day for 2-4 weeks, then go into remission for as long as several months to a couple of years. I hardly sleep those nights, but never miss work since I am done by 5 am and then sleep for an hour or so. The pain is crazy intense and I try to stay awake all night since if I can feel them coming and using O2 I can minimize the pain. I am like a zombie, however, the next day and spend way too much time apologizing for errors made due to my fatigue. Most people don t know I have this as they wouldn t understand anyways. I guess I could use a sympathetic ear. I just turned 50 and don t seem to be able to handle the stress of my episodes like I used to. I m feeling isolated and little afraid of the future. I don t know how those of you who deal with this more often cope. I am in awe of your courage!! Thanks for listening
Darren Smith <dsmith@gwinn.k12.mi.us>
Skandia, Mi USA

I have done my own research and all these comments just prove to me that i have cluster headaches!!! no doctor will listen and say they are migranes! Please help what to do or try!
Michael Lunn <michaellunn89@hotmail.com>
Darlington, Durham England

Dear sufferers. 35 years old and I'm going though my 4th or 5th round of cluster headaches since they first rattled me in 2000. I don't get much sympathy from people around me since they cannot come close to imagine the pain I've endured too often in recent years. They just dont understand and I cant blame them really. However, as trivial as sending out my thoughts and feelings accross the wen can be, I am surprisingly encouraged and uplifted to read the testimonials because I dont feel so alone anymore. I am exhausted, it hurts so much and it's a daily struggle to cope with this hell. But this crap is really making me tough. Broke my big toe a few months back and that was litterally a dream scenario compared to the molten lava that spills out of my eye and nostril when I'm in full attack mode. I've had lots of help from Rizatriptan and I've just been prescribed some prednisone steroids to tame the lava puking dragon in my head. I hope it works. Helps a lot when I drink water until I almost puke as I am having an attack as well as pressure points and ice packs on the painful areas (eye, temple etc...) a nice warm shower works wonders for me. I've heard that magic mushrooms actually kill the clusters all out but from what I remember back in highschool, schrooms were way too intense for me. Sending all of you my salutations and prompt and speedy remission for good.
Joel Pilon <jppjoe@hotmail.com>
Ottawa, ON Canada

Great site! I just want to share with all of you the same feeling of all sufferers. I have been with this for the last 15 years or so. The only thing I wish is this nightmare ends soon. Maybe my case is not as terrible as many of you but believe me when the attack arrives it' s like a bomb inside my head. Anyway this is what I have to live with and I have to get used to. Blessings to all!!!
Jorge <Jorghe75@gmail.com>
Alajuela , Costa Rica

First time commenter. Great site and just reading all of your posts makes me feel bad for each of you, but also makes me feel like I am not a wimp or should just get better. I have had CH for 18 months. I am a lawyer, Father of 4, married and was very active. These things have turned life upside down--and when you say the word "headache" it is looked upon like it is nothing or psychological. Being treated by Dr. Merle Diamond, who is great, and the latest regime has worked a bit. It is a nasal injection ganglion block. It does, seem, however, that the windows between attacks is getting shorter even with the blocks. Anyone else had these blocks? Best Regards, Jim K
JIM KNIBBS <jjknibbs1@gmail.com>
Chicago, IL USA

I am a 23+ year cluster sufferer/survivor. My clusters began in the summer of 1990 at the age of 27. Typical clusters would be 3-4 months, with 3 headaches/day, sometimes I'd get a treat and have 4 ;), 6-7 days/week, at regular intervals (mid-day/late morning/early afternoon, evening/night, mid-night/early morning), headache durations of 3-4 hours, and generally 4-6 months of remission between clusters. I have had 3 clusters in one year with short remissions than relapses. Somewhere around 2007, my headache duration began to shorten, a lot, (to as little as 40 min) and the cluster durations decreased from several months to several weeks, then to just a week or two. Remission would last for anywhere from 12 months to nearly 24 months. I noticed these trends immediately, and realized that I may soon be walking out the door, into brighter, more cheerful and enjoyable days, and more restful nights...and have a LIFE again!!! I had no idea throughout most of this time what these headaches were caused from, and until 2008 when I discovered what they were, I thought I was alone in this whole ordeal. Meds and procedures to reduce the pain had such low success rates that I didn't even consider them as an option...that's where the all alone feeling came in. I only once visited a family practitioner in 1994, and we both suspected sinus infection (which I've read is a common mistake) due to the obvious reasons of runny/stuffy noes during a headache...of course, the antibiotics I was prescribed did nothing, and the doctor did not order any blood work for white blood cell count, etc, before making a diagnosis. I'm currently in a relapse, and have had 3 nightly headaches of around an hour (no day-time headaches), but today had one mid-day, then another this afternoon very briefly for less than 5 minutes. I have worked while having headaches for this entire time since the onset, and had to fight the total exhaustion and desire to sleep until I was home from work. I have been awakened by them at 2:00 am and just got up and went to work because I knew I wouldn't get back to sleep (I set my own work hours for the most part). I have gone to sleep at night in the middle of a cluster headache...whether or not that sleep did much good for me is yet to be determined, because I would wake up exhausted, wondering why I was even awake. Through it all, I have found there are ways I can reduce the pain, either by massage, direct pressure, or, through mind control...not so much meditation as it is tricking the mind into thinking it is not pain I'm feeling. I still don't know how I ever did that, because my relapses have been too short and far between to make it work now. If I figure it out, I'll surely be back and write about it. And yes, I went through the head-banging scene, among other things, when I simply could not get control of the pain, and didn't know how I could take it any longer. In the earlier years, I could take Naproxen Sodium and get fast results, with a lot of relief, as long as I took them at the onset of a headache...that first twinge...then after a few years, nothing...same thing with Ibuprofen/acetaminophen, only they were far less effective. Then came migraine meds...they helped some, too, but I use little if anything for the past 8 years or so...just doesn't help anymore. I can't carry oxygen equipment with me at work, which I learned recently can knock a cluster into submission for many...to have O2 at home now would be nice, sure, but I wouldn't use much now days...and so it goes. I may be one who will have long-lived lingering effects. After what I've already been through compared to what I'm dealing with now?? Piece of cake...I'll take it with stride and go on with my life. For now, I also am extremely grateful for the relief of shorter clusters, shorter headaches and far less pronounced back-ground headaches, which, by the way, are unnoticeable to me in recent years, at least 90% of the time during a cluster relapse. I wrote my story to offer a of hope to anyone in need. My situation may be similar for others, in respect to not living with full-blown clusters for the rest of your life. If you're put some time into this already, you may be nearing the end of the really bad stuff, and coming closer to a better quality of life...better days at work..more enjoyable time with your family. My life was a shambles, but that is now changing. The last statistics I read (5 or 6 yrs ago) stated that once you have clusters, you will have them for 20+ years...I fell a little short of that mark with the all-out skull-exploding, eye-ball piercing, brain-grinding headaches, and am now hopefully on the downhill side of the mountain, heading to a better quality of life. Some of you may be close to reaching this stage yourself...never know to it happens. Hold your chin high and DO NOT GIVE UP. There is hope, and I'm living proof of that. My best wishes to all!!!
Eric
WY USA

ive been suffering from thses cluster headaches since I was 14 and have only just found out what they are from a regular who goes in the pub I worked at, I was couldn't believe when he was describing his symptoms to me and that they were exactly the same as mine ! I had no idea, I knew they wernt migranes because the pain was so intense, and I never felt sick with them and light and sound don't affect them either, the last bout I had was through Christmas and new years last year but I can feel I am due them quite soon as it is usally around 6-9 months remission period. so clearly, im crapping myself, especially as I havnt told my new job about them yet :/
sunny <sunnylee@hotmail.co.uk>
surrey, united kingdom

To the angel from California who contacted me, my utmost gratitude. I have posted on the message board under the supporters. There is a method my father and I have to help with the beast. I am hopeful that this will help others as much as it has helped me and my father, who has suffered for 40 years, and my self for 10 years. Thank you for your support and your email. I wish you no pain my friend. If you can not find my post on the message board, shout, I will let you know what one of my secrets in helping to defeat this beast. I am not a doctor or nurse, however, just a sufferer trying to help. I hope that this helps others, as it has my father and myself.
Erica <ehill2327@gmail.com>
trenton, nj USA

Hello all. Fortunately, I've been pain free for just over 3 years. My neurologist prescribed "Depakote" (one per day) and Relpax for the pain. My last bout lasted for approximately 2 weeks. Previous bouts were similar. It's worth a try but be wary of the side effects, as with most medication. Take care and "ride it out".
Mike D <dmrdennie@aol.com>
Joliet, Il USA

I've been up since 2:26am with attacks, they have just subsided about 30 minutes ago...now i have to go shower, get dressed, get my son off to school, and act like everything was just fine today at work....its 5:24am here on the east coast and man I am wiped. I've been going to university of penn, the doctor there has diagnosed these as clusters, and has me on medication for them, however, this cycle is just unbearable. The imitrex needles, the 60mgs (for 5 days, then 40 for 5 days etc.) is just not working and neither is that oxygen. This beast is just out of control. I feel bad for my fellow sufferers. Also, yes the headaches are worse than natural child birth, child birth was an absolute walk in the park compared to these headaches.
Erica <pureevil3918@aim.com>
trenton, nj USA

Hi all, I'm on week 16 after being diagnosed. My CH presents like a stroke and after spending a few days in hospital I was told I had CH. I have constant pain in my left temple and 'Mr Pushy' behind my left eye. The left side of my face, eye and mouth is in a constant state of drop and looks worse when the pain increases. I'm on amitriptyline at night and use sumatriptan injections and O2. The injections are a god send and I carry one everywhere. What I am finding hard is the constant headache which switches to a full attack mostly at night . I'm hoping my remission comes soon but at the moment it looks slim. My wife is a big support and understands and gets me... I'm a lucky man... Recently I am getting bad nausea with the pain. I'm comforted to see so many on this site who replicate what we are all going through. Well that's me and I wish you all well
Dave
UK

after 30 yrs found teststerone no more cluster
dick potter
bristol, ri USA

a long time sufferer who is curios
gregory <cstrouble@yahoo.com>
massillon, ohio USA

I have suffered from cluster headaches since 1993. For me, my doctor was wise enough to know what exactly was wrong. I would sit in freezing cold outside on my step with just a shirt on crying, cause I didn't know what the hell was happening to me, but the cold helped then. It first started in winter, lasting 3 months daily. Its weird how it has a mind of its own. First 7 years, always come Jan, then next 7 years it was September, last 6 years its July. First 12 years, left side of head. Next 7 years, right side of head. Now its back to left side since July 18th. I used 100mg Imitrex for 11 years till my head got immune to it, then I used 5m Zomig for 6 years till I found out it cause major joint issue, hence, I've had both knees replaced since 2011. Have been on 10m Maxalt last 3 years. Works for me when taken 2-3 hrs before bed, but maintain that dull ache during the day. Funny, as I get older, the episodes last longer in duration. Meaning, my last episode last 9 months! Every damn night and day! It stopped after my first knee replacement due to the anesthesia put me out. Then I had the 2nd replacement last year, still no clusters. I was cluster free from 4/11 to 7/13. Longest time ever since they started. Now, its BACK! Fortunately, my employer respect my situation, but as all of us know, the insurance company don't. They actually expect 9 pills to last 45 days, LOL! My kids would be scared to death at night cause I'm out of control with pain and fear. Good their grown and don't have to witness. Finally showed my dad and aunt couple years ago a YouTube video so they can understand the ordeal. They cried. I've had cat scans and MRI's even in the mist of a cluster attack and nothing shows up! You want to have a tumor, at least its an answer. Tonight, I found this website by chance. Tonight, I have no meds but excedrine. Tonight will be a night of fear and anxiety. So I will use my heat wrap in microwave, pace and holler, press my head against the walls edge, rub and press so called pressure points, sit up straight in a chair after I wear out my new knees, and keep the heat coming cause ice is too painful. Peace!
Ron P. <darkyparky@yahoo.com>
Elkton, MD USA

Hi, I've posted this before, hopefully it'll help you all. I've suffered from cluster headaches since 1997. Went to several doctors before I was finally diagnosed with them. I saw several neurologist, before one finally put me on the right medication! At the onset of the cluster I take prednisone(5mg tab) 4 days x3 tabs, then 4 days x2 tabs, then 4 days x 1 tab. I also take fioricet as needed for pain, and use immitrex auto injectors for immediate pain. This regime works great! Once I started this regime it helps cut my cluster period down from what was normally 2-3 months down to a couple of weeks!
Jeff <maysjf67@gmail.com>
San Antonio, TX USA

Hi all! I have been on this site before, but for some reason I' having a hard time getting onto the message board again. Just started having these awful things again. This time around I'll get 2 or 3 a night. the first one will just start to subside, and the BAM! another one comes on full force. I ran out of Tylenol the other night, 1:45 a.m, I was in a panic.....jumped in my car, in my pajamas, hair all wacked out, I looked scarier than hell, went into the local a.m. poor kid working there just looked at me, I said TYLENOL! he points to the wall, I grab 6 of the little travel size packets, go to the counter, head in my hands, tears flowing from my left eye, he says wow! you look like your in pain! I just nodded and left. Good thing I didn't get pulled over on the way home, here if you look crazy, they just tazer you! Hope you are all doing well and wish you all PF nights!
colleen
PORTLAND, or USA

Hello, I am suffering c.h. from last 10 years. It so many pain ful I am suffering from this headache last ten years, starting i understand this a normal headache so i check my eyes, but my eye vision is clear. But my pain is increased day by day i went a physician he recommend you go for a neurophysician. I went a Dr. Pnagadia in jaipur SMS hospital. he suggest some medician but my pain in increased so he suggest for CT scan but my CT scan report is normal but Dr. says you go for a new CT scan because he found a small clot but he is not clear about this after that i admit in sms hospital but Dr.went in a seminar so he can't see me. After that i went another Dr. but all Dr. cant understand what is exact problems he suggest for MRI but it is normal .But my pain is increased i feel seaver headache and because of this pain i am unconscious about 2-3 min. Dr. suggest you go for a physertist we go but no relief . after that i went Baroda for Ayurvedic treatment and homeopathy i take four month treatment he gave me a some injection in my head but i don't which injection he gave to me. he suggest for EEG but it is normal. In the month of march i take treatment in madhovilas in jaipur it is a ayurvedic hospital he gave me shriodhara because of shridohara my unconscious problem is solve but my pain is increased. one day i went for shridohara suddenly i feel acute pain my vision is lost than Dr. check my vision and eye pressure. my eye pressure is increase about 24 to 25. i take medician for this eye pressure. my eye pressure is now all right. during the acute pain i am lost my memory for few min. nowdays i am well about memory lost problem and vision lost but my pain is increased about 90%. This time i take a treatment neurophysician he give me above medician (heavy dose pain killir and alprazolam tab1 mg) so please you suggest what is exact problem and treatment
yogesh <yogeshkpareek@gmail.com>
jaipur, rajasthan india

Well this is my first time here but I really have no one that truly understands my problem. I have chronic cluster headaches ugh just saying it kills me. I started having them when I was about 9 1/2 worst time I could remember was being that young in school with my problem :(...people just didn't get it. I couldn't even do some of the normal activities the other kids did, it would start and I would be sent to the nurse to wait for my mom or to take medicine and wait to see if it helped. If it didn't help then I would go home :( I just wanted to be able to do stuff like the other kids. I am 20 years old now the longest time I have went without a headache was like 1 day maybe 2, but that has probably happened 5 to 6 times out of the whole 10 1/2 years...the only other time is when I was pregnant I didn't have a single headache..by the way I HATE calling them headaches simply because so many people hear the word headache and just think well I have had a headache before its not the bad...and all I can think is F*** Y**!!! Anyways sorry for that...but yea I have a beautiful 2 year old son he helps me with my pain everyday when he knows I am hurting he gives me kisses and says he loves me..it helps in its own little special way. I regularly have 3-4 headaches a day...somedays 5-6 I just chooses whats going to happen its self...it starts with this sensation I get in and around my right eye it starts heating up and I literally mean heating up you can feel that the one eye is hotter than the other...then the horrible pain as if someone just stabbed me in the eye with a pencil or something and is twisting the object..this was how it use to be for the longest...then it changed they have always started the same way but more things started happening...it would start them same but I would also feel dizzy with nausea and this lightening like pain going to the back of my head down my neck...then about 4 days ago the pain in my neck changed instead of lightening it is now a pain that sticks in my neck. Yesterday it changed again it started and after that I felt extreme nausea and felt like I was going to pass out and the pain in my neck made my face and neck feel stiff like I couldn't move them but I can its just the feeling and I had the feeling like when your leg is asleep but all over my body from head to toe...and I was just crying out in pain and it was just me and my son home alone I felt so scared for him...this had never happened to me...so now im just sad and lost my headaches just keep throwing new things at me that are keeping my from enjoying so many things in my life...
Jessica
nc USA

I just found you all... and I can't begin to explain the emotion I felt when I first read the home page... After 4 weeks of unbearable headaches every night and searching for something, anything on the internet, again... I now no longer think I suffer from migraines, I believe I have cluster headaches! I have explained myself to others as suffering from Migraines for 10 yrs, except everything they want to relate about I couldn't - no the light doesn't really hurt, no I don't get nauseous, and for god sakes - you can actually stay still while you are waiting for the Imitrex to kick in?? The emotional release I felt when I came across this website on Friday night was enough to trigger another round (a little earlier than usual, oh well) - there are others, and somehow that feels better, you understand. I had my first headache when I was 23 yrs. old (10 yrs ago), and now I think I can describe myself as episodic, about once a year (the time in between my cycles is growing, thank god), and they last for about 4 weeks, occurring every night, usually only once a night, about 3-4 hrs after I fall asleep. Imitrex is my wonder drug... I am told by my doctors, "its great you don't drink, Imitrex is doing enough to your liver". But in the moment, I don't care that I have already taken 12 in this month. I need it to stop, and that little pill still works for me. I'd pay anything for it, but thank god I have insurance. Thank you all for being here, for understanding my pain. It will help me till the end comes... 3 1/2 wks down... I'm almost there.
Maureen <maureen_mcg79@hotmail.com>
Flagstaff, AZ USA

I suffered from cluster headaches for 8 agonizing years and heard about lsd and magic mushrooms for treating clusters. I tried them and have been headache free ever since. I highly recommend
Corey <dcrd80@aol.com>
Norwich , Ct USA

Hi! I love this site! Really makes me feel better just knowing I am not alone. Don't think anyone who has never had one of these things has a clue. Lots of helpful information. I have been a sufferer for over 15 years.
Kathy <catcaste2@yahoo.com>
Essex , VT USA

Hi all, I have been reading this site for a while now but first time I've posted. I've been an episodic sufferer for about 6 years now, but only just been diagnosed and given the right meds. I have sumatriptan injections and they do work. I am about to do a lot of travelling and will spend hours at a time on planes, busses and boats and intend to take a good supply with me in case I start a cycle while I am away. My question is, can the injections be taken through your clothes. It will not always be convenient to find an exposed bit of body, and I would like to be as inconspicuous as possible. I do hate it when people gape at you when you are feeling the worst. Great site by the way.
maz <masju@hotmail.co.uk>
Havant, England

Hello! Unfortunately, I joined the club in 1992 when I was 18 years old. I get them every 4-6 years; they last for 30 minutes every day for about 4-5 months. I would love for someone to carve out my eye, but so far, no one will! ;-) I feel like I have tried so many different things over the years, but nothing has really worked (Oxygen, meds, accupuncture, injections, witch doctor, etc). I will continue to fight this up hill battle because I plan to WIN!! I hope YOU do the same!
Melissa <melissa_bailey@att.net>
STL, MO USA

I urge you all to google search, "cluster headache, LSD". The studies that have done are truly amazing.
Rich Rossavik <rossavikoj@hotmail.com>
Gresham, OR USA

I thought I would never have to come back to this site, but here I am. It was 4 years ago since the last and now the monster is back. It hasn't been that bad and not everyday this time. They don't seem to last as long or as painful as the last cluster attach. The last cluster attach lasted 9 months with at least 2 a day. Ice always seems to soothe the pain. I am hoping it will only be a short bout. Wish me luck.
Benny <bennystpete@yahoo.com>
St Petersburg, FL USA

Hi all, as it says on the main page of this www, I found it last week at 3 am, after waking up with extreme pain. I decided to look for info on the internet and bumped into all of you. Thank you for all your comments, and sharing of your own experiences. After 25 years of suffering from "migranes", last week I was finally diagnosed with CH, usually I get them twice a year, June and December, and for some reason (it may sound ridiculous) I believed it had to do with the change of the seasons. From what I read, some think the same. Though, I am in Panama, very close to the Ecuator, our weather changes go from rainy to dry season... For the past three years, lived in Canada, and went through the same in similar months... Any ideas?? Anyways, each crisis go for three to four weeks, waking in the middle of the night with the pain. Here I buy Aspirine Forte (500mg of Aspirine, 65mg caffeine each tablet, take two and wait, less than $2 per 20 tablet pack), and the doctors also prescribed Relert ($24 for 2 tablets...$12 each), dont know too much about it but it seemed to help in reducing the episodes...still not sure. But when it comes to the price, nothing compares to the Aspirine. Anyways, I really appreciate the initiative of creating this page, we all know we are not alone, and the stories tell us not go to extremes...the pain will eventually go away, and our families love and count on us. Always be positive. Just to add, I am a 42 year old male, with a 5 and a 1 year, beautiful kids.
Carlo <carlo30@hotmail.com>
Panama, Panama

first time on site. been rockin and rolling on the floor for week now...4 a day. zomig does not work.... any suggestions..... afraid to drive anywhere
Bobby
Saugus, MA USA

I had my first CH after 8 years of remission, I just wanted to say I am glad to have found this site and to know that I am not alone. I am petrified of a repeat performance. I did start to wonder if they had the right diagnosis as I usually have a constant ache in the other side of my head to the attack but I think it is a secondary headache and a warning to let me know that there is more pain to come.
Michelle Pike <m.pike@hotmail.co.uk>
UK

My first cluster headache occured when I was 19. They always affected the left side of my brain and varied in severity with sometimes months of no pain. I tried everything from beta blockers to breathing control but to no avail. When I turned 40, I could go sometimes from one to two years without an episode. When I hit 50, i thought they finally left for good as I hadn't had one in a while. I am now 56 and about two weeks ago they started in again. Only this time they are now concentrated on the right side of the brain. Oh lucky me. They hit in the late afternoon and bother me all night long. The only thing I have found to help ease the pain is believe it or not are push ups. Lots and lots of push ups. It unplugs the stuffed nostril and relieves me for a while until the next episode kicks in. I can avearge about two hours of sleep at a time. I have noticed that spring and the onset of winter months seem to be the culprit. I could go on and on about these mind breakers, but that would be fruitless. To all of you sufferers out there, I wish I could say they will eventually stop for good, but I can't make that assessment. Stay strong and positive.
steve
USA

Had my first cycle last December. I'll never forget that moment. I was at the movies, watching Flight. Suddenly, my nose started pouring, along with my right eye. My eyelid started drooping, and felt like I had just injected it with a massive amount of water. Then, like a bolt of lightning, I felt like my eye was being ripped out of its socket. Never in my life had I experienced this type of pain, and I've had my fair share of accidents! Here I was, a 24 year old male, bawling for the entire duration of the movie... All I could think was that everyone in the theater thought that I was an alcoholic, one that could relate to Denzel Washington's riveting performance. Oh, if it was only that simple... Love the site, it has helped me tremendously.
Logan Pierce <L0Gan1188@unc.edu>
Winston-Salem, NC USA

Hi. I am 43 and first started with a cluster headache in March 2013. It lasted for just over a month with a one day reprieve during that time period. I've read a lot of other peoples posts and I wonder if it is cluster headaches I have. Only once have I been awakened at night, they become more severe around 8pm. I've tried the prednisone to try and shorten the attack and that did seem to work some. I tried the Imitrex and that just made me have a severe headache and made me feel overall like crap - I don't know how people can take that. I have just gotten over my fear of going places but two days ago it returned with a vengeance. I ended up in the er on Memorial day and was given oxygen that didn't work completely so they gave me some other drug that made me feel like I couldn't breathe and was closterphobic, I just wanted to get out of that little room. This is where some will probably get angry with me but I beg and beg my dr. for oxycodone - that is the only thing that keeps me sane. I will never own a gun, because I know I would use it on myself. I have a very high tolerance to pain, but these headaches are a whole different ballgame. I'm back to feeling anxious about doing anything. You guys can hate me for saying this, but the only thing that helps me to survive is the oxycodone. It doesn't make the headache go away, I can still feel it, but it makes it tolerable.
Willow <WillowTree@gmail.com>
Minneapolis, MN USA

For those with chronic cluster headaches...after trying probably 10 different medications, Zyprexa 5mg a day keep the headaches away. And a larger dose will stop a cluster in it's tracks. Yes, it is an antipsychotic and NO I am not psychotic. Please try it. It may save your life--it did mine! Don't give up trying new medications until something works. I also take Lyrica 300mg at bedtime.
KevinL <Klake440@gmail.com>
Bedminster, NJ USA

I found this site in a roundabout way, but freakin LUV it! My brother is suffering from this sonofabeast, its awful to hear and see and be absolutley efn helpless! No cure, no cocktail! We can put a man on the damn moon, but sumbody sumwhere cant figure this shit out? Jus lookin for answers.......
Linda C <lcritter42@yahoo.com>
Fort Worth, Tx USA

CH sufferer since 1965. Started taking Cafergot for relief in 1978. Over the years Cafergot has worked well although I tried everything else that came along. Well, since it worked, Cafergot is no longer available in the U.S., they want us on Imitrex which costs more and anyone who has taken it knows it will probably kill you off sooner or later. I went to Walmart and bought "Jet-Alert" double strength caffeine for "when alertness is required." Cafergot is 100 mg (99 mg caffine), and "Jet-Alert" is 200 mg caffeine. For me it works better than Cafergot, much better than Imitrex, and a box of 16 is under two dollars. I always took two cafergot, so one of these is the same. It is nice to get free of the price gouging and the stuff with killer side effects. Hang in there, I am 68, 48 years with CH and they haven't killed me off yet.
Galen <galendukes@yahoo.com>
Auburndale, fl USA

I am 41 year old female who has been suffering from cluster headaches since about 1997, at least that's when I first got checked out by doctor's and was diagnosed. I have never had any kind of treatment for these, they didn't really offer any help for me back then. I am going to go see a specialist soon though as I have noticed over the years that it is much worse. The almost constant runny/stuff feeling in right side of my nose and the pain on right side of my head and around my right eye just drives me crazy. I have been in situations where I am walking accross middle of intersection or through store where I have had to and almost had to stop dead in my tracks and hold my head until gone. Talk about embarrassing! I am glad I found this site, now I know I am not alone. My husband and children do not understand what I am going through or the degree of the pain sometimes during one. They try to be supportive though. Some day's it really scares me and it feels like my head is going top explode. I have other medical issues as well so I fear that they will all collide together like a big train reck and I might ***! I am hoping that in writing this I might hear from some others that can understand and maybe have some advise and such. To all sufferer's out there, take care and feel free to email me: dmp369rp@gmail.com. Thanks for reading.
Dawn.P.
Canada

Hey all, I'm 57 and was diagnosed as having cluster headaches in my early twenties. They are episodic, sometimes with years without cycles. One of the most annoying things for me was having people guess what was causing them and offer solutions while I was having a headache. I know they did it out of love but I quickly learned to shut myself away and was not interested in any advice on how to handle them, not even from doctors who seemed to know little. I am going through another cycle right now, researching on the net for some sort of relief and found this site, thank you all. This sounds twisted no matter how I try to word it but it's nice to know that others have gone through this kind of pain and are capable of understanding how excruciating the pain is. I will continue reading your experiences to see if I can find something that will work for me to lessen the frequency and intensity. Thanks for sharing. Dave
David W <drw@hotmail.ca>
Sidney, BC Canada

Hi All, I'm the wife of CH. I have been looking for answers all over the internet. Then I typed in CH Support, and here I am. It's been 10 years since my husband was diagnosed with CH. He was headache free for 2 years, and at the end of January they were back. Which started the cycle of Dr visits, medication etc. Well we have just started taking B12 on Saturday, and they are starting to appear once in the morning regular time and maybe one in the evening. But the one thing that is for sure they are only lasting 15 minutes to 20 min. But I did see D3 as a recommendation. If this will not stop all together will be trying the D3-fish oil. Thanks to "Batch". Just want to say Thank YOU!
Tina <crazycool36@yahoo.com>
anywhere, anywhere USA

I guess I have finally excepted it. I have visited this site several times and done research on cluster headaches. After telling myself for 10 years that it was a bad sinus infection, my ENT confirmed it was not. I have never prayed harder for a sinus infection. After months of waking up at 3 am and praying for death, here I am. Thank you so much for this website. I hate we are all here because of the hell that these headaches cause, but at least I am not alone.
Jammie <jammiemcmillin@gmail.com>
Wynne, AR USA

I am 68 years old and have suffered CH since I was about 18. I thought I had finally outgrown them when about two weeks ago they started again after 4 years PF. No one except you people could possibly know what this pain is like. It does seem to help to know that I'm not the only one going through this hell. I cry when I read some of your experiences because mine are exactly the same. Over the years I have tried many things. Most don't work. The water therapy does seem to work and I am trying that now but it is hard to drink that much. I have found that O2 does work most of the time if you are where you can get at it fast. If not, try intentionally hyperventilating until you feel dizzy. It puts a lot of O2 from the ambient air into your head and can work as well as breathing straight O2. Also, there is a pain pressure point between your thumb and first finger in the meaty part of the back of your hand. Push hard with your opposite fingers on this point and hold it. It will be on the left hand for right side headaches and right hand for left side headaches. This works quite well if its a milder headache. (if there is such a thing as mild) I've had a bad one today. It has eased off but now just hangs around just barely tolerable for hours.
Paul Wulf <pwulf@epbfi.com>
Chattanooga, TN USA

This website is so wonderful because I feel so alone with what I have, no one I know ever heard of this. Now 62 female, CH since age 53 first winter, now anytime of yr/never know. Have good doctor + neurologist, fast diagnosis originally. Started Verapamil, then combo with Topamax had breakthroughs, Lithium past yr & half (2 x 300mg/day) perfect til breakthrough now & use oxygen to abort/could NOT live without it. Worries me that oxygen doesn't work for some people, takes timing/patience & good mask. Tried prednisone no luck. My Tricks/hope can help others: Never lie on headache side to rest/sleep 1 year even slept propped up to sitting position, annoying but worked Keep coffee machine on ready During CH season, some food sensitivities, any processed food (deli meat, pkg gravy, coloured juice) will set off Raw tomato for some reason Not really sure if episodic or chronic as have to be medicated all yr, at some point always break thru, Lithium best was year & half CH-free, best yet, hoping just med increase will do it this time. Thanks for being there, this is a terrible affliction.
Carol Camara <kitchenlady7@gmail.com>
Burlington, ontario Canada

I have dealt with the monster for 18 years! I am going through a cycle that I am 2 weeks Into. I have a question has anyone found anything to help the tenderness of the forehead after the cycle is gone!! My tenderness last at least anthor 1 to 2weeks after the cycle has stopped!!!
Chuck <cncfavory@yahoo.com>
Ft wayne, IN USA

I have suffered from cluster headaches since I was about 14 years old. Over the years doctors told me I suffered from everything except cluster headaches but could never give an effective treatment. I was final diagnosed with cluster headaches in 2011 by a neurologist while I was still in the military. I had never even heard of a cluster headache before then but as I began to research them I was at least happy to finally know what was wrong with me. I have searched for some type of group or forum like this where people know the pain, fear, and depression that comes with an episode starts along with the judgments that come from people who don't know about this condition and have no idea how it feels to just want to "give up and end the pain". I truly hope this is a good support site and I look forward to using this site as a support system.
Redd <redd.driver@yahoo.com>
Oceanside, CA USA

I have been a sufferer since 1983. For the first twenty years I suffered chronically, multiple attack daily. Asleep or awake and bilaterally. I was in my own hell. It desyroyed everything I ever did. High school, college, friendships, work and my marriage. Then amirracle happened in 2003 they stopped. I thought I was free, but it was not to be. after a year they were back, but only for six weeks and then they were gone again. I got another year then they were back again. It appeared they I had become episodic and not chronic. It was better than the first twenty years. it went on like this until 2012. they are back again and don't appear to be going away this time. I am back in hell once again. I lost my job and my home. I now reside in a homeless shelter. I don't think they are going away this time. I don't sleep. I don't go out. all I do is suffer. I don't know what to do anymore.
Bryan Dennison <haWKHUNTERSIERRAHOTEL@YAHOO.COM>
ChicaGO, il USA

Thank you for having this site.
Anita Denney <AnitaDenney2012@yahoo.com>
Manzanola, Co. USA

started getting these headaches in 1978 had them for 25 years,and then had a 10 year break, but they are back again the only thing that stopped a headache was a foot massage. give it a try and let me know if helps anybody else.
tony yanko <heaven5821@gmail.com>
saint louis, Missouri USA

I've recently retired from the military. I've been suffering from Cluter headaches since around 1998. The doctors tried having me drink black coffee, oxygen, lithium and several other drugs. The only thing that seems to work is a regime of drugs perscribed by the last neurologist. At the onset of the cluster I take Prednisone (5mg) 3 tabs x 4 days, then 2 tabs x 5 days, then 1 tab x 7 days: then I also take a pill that's a mixture once a day. The pill is comprised of acetaminophen 325/butalbital 50/caffene 40: I use the Imatrex auto injectors when ever I get the headaches to stop the headaches. This regiment seems to work rather well and shortens the cycle for my cluster headaches. I don't know if this will work for anyone else but it works great for me and cuts my cluster cycle down to about a couple of weeks instead of a couple of months.
Jeff <maysjf67@gmail.com>
San Antonio, TX USA

I recently began my cycle again after pain free attacks since 2009. I am 45 years old and thought that I had grown out of the clusters. I first started getting my clusters when I was in my middle 20's and in the Army. I have lived with these for many many years and all of a sudden they came back 2 weeks ago. I have retired from the Army after 23 years of active duty service and while I was in service I finally convinced my doctor's to prescribe me the Imitrex injections and I was able to get them pretty much all the time during my episodes. I get them every spring. Well now that I am retired and using the VA Medical system I am back to square one with me trying to convince my provider to prescribe my injections. He first gave me one order...yeah right...I told him "not enough". He then gave me five...."yeah okay that will last me two days" even with me self injecting 2mg myself with a q-tip. He sent me to see the pharmacist who asked me how much I needed. I told her to give me 15 packages a week. She basically laughed at that. I got mad! I asked her if she knows anything about Clusters and what they do to a person. She said no, and so did my doc. She finally gave me a prescription for 10 packages with a refill. That was last week and I am down to 5 packages left. They ordered me oxygen and that finally came the other day. I have a machine next to my bed and a portable tank that I have taken to work. I am going to reorder my script today so that I have it waiting for me in a few days when I am out of injections. They made me an appt for a VA Neurologist in 2 weeks. I am trying to get service connected for disability for these headaches. The pain seems to be the same as always but I think I am at the peak of my episodes right now. 2 weeks into it and I am exhausted. Getting anywhere from 3 to 6 a day now. Some during the day but like most of us I am sure, at night when I am suddenly waken with a full blown one. My girlfriend is freaking out because she doesn't know what to do to help...not much she can do. She tries to rub the left side of my head and it helps some, but, when I tell her to press harder she says she is pressing as hard as she can and if she presses more she feels like she will impale me. She is scared for me and I try to ease her worryness by telling her these will go away in a few weeks (I hope!!). It is starting to affect my work now and my boss is concerned and supportive. She has seen my attack first hand in several meeting now and she tells me to go home...but to go home means that I will just sit there and wait...wait....wait until the next one hits! I am exhausted...little sleep...no appetite and have stopped working out. Working out seems to trigger. I smoke as well and have to quit...I want to quit...and this is a trigger for me...I am starting the patches today...I feel the pressure on the left side of my head and behind the eye most of the time. The pain is not there but the pressure it...then the automatic "light" goes on...it is a switch that I can feel in my brain...and there it comes...I try to hit an injections (2mg) quickly and it will ease the intensity if I do react quickly...but if I don't it will take longer and then I find myself rocking back and forth on the couch or in the bed. When I am up and out driving around if one hits I don't always have the luxury of stopping to give myself an injection. I have to drive somewhere and stop, give myself an injection and wait. Usually by then, it is full blown and I am screwed until the meds take affect. Same if I am in a meeting... I am rambling...you all know the pain and I am thankful that you all feel the same stuff that I am going through. I pray that these stop in a few weeks...usually they last about 30 days or so and then just stop. I hope to get more injections and that the VA doctors understand why I need them so badly...without them I will go insane! Sean
Sean Lanegan <slanegan67@gmail.com>
Lakewood, WA USA

I have had cluster headaches since 9th grade everyday in math class I'd start getting the searing pain up my neck and I would start pushing at the base of my skull hard enough to jamb my fingers then before class was over I would be a mess! All the kids next to me thought I was crazy with my face all messed up and my eye red and tearing! Not to mention beating my forehead on my desk. Every day same time. That class loved me. But needless to say I failed math that year! I am 32 years old now and have had one year since then that I did not get clusters. It wasn't till I was 24 that I finally ran into a nurse at the urgent care that knew what my problem was. I had gone to The ER many time only to get treated for migraines and sinus headache. Giving me medications that intensified my problems. After finding out what the real problem was and burning through year after year of Doctors and ER staff telling me I had migraines still and refusing to listen to me! I had to find my own remedy. I have basically attempted suicide because of this journey! But I found something!!!! If I catch it in the onset I get up and run ! That's right at 2 in the morning! I get my heart rate above 150 and maintain that for about 8 -10 minutes! The pain fades as my heart rate goes back to normal. It works about 9 out of 10 times! The downfall is I have to run sometimes 3 miles a night but I'm in shape now and it beats the pain! Also epinephrine or eppy pen works to but I wouldn't recommend that if you want to live! I feel all of your pain and hope this works for at least one of you! Good luck and take care!
Burton kelley <Camaroman_80@yahoo.com>
Lake Havasu City, As USA

So it only started several weeks ago. You see, I work the graveyard shift and don't have the best sleeping habits. Well the next afternoon, I get this, what I thought to be a migraine, which lasted for 3 hours. I thought to myself, "Holy shit!!! What was that. I need to eat something and go back to bed." Well about the same time, the next day, I get another brain banger. I start taking Tylenol, drinking soda for the caffeine and nothing seemed to help. I couldn't look at the TV, listen to music or play with my kids. I finally got a few hours of sleep and was awoken with yet another headache. I would just stare at the clock and watch time stand still as I'm at the point of a breakdown. After all the screaming, pacing, rocking back and forth and praying for the pain to stop, I decided to self diagnose myself with the wonderful thing as WebMD. This took a few weeks because I was afraid of what I may see could possibly be wrong with me. I mean I'm in good shape. I play sports everyday of the week. I stay active. How could something be so wrong with me. So, I put in the all the effects happening to my head. It comes up with CH. I think to myself, what in the world is a CH. I do all sorts of research on every different site I could find. I'm reading what is actually happening to me and I just sit there in disbelief, almost in tears. So now I'm afraid to fall asleep knowing I will be awaken by another brain beat down in a few hours. I try to stay strong for myself and my family, remaining positive saying I can get through this one the moment I feel it start. But just as soon as it starts, I realize I'm not as strong as I hoped and prayed I would be. My wife just stares at me while I'm at my worse. I just ask to be by myself, which frustrates her because I know and she knows she can't help. I walk into the back room put a hoodie on and cover my face close the blinds and curtains and sit in the dark just wishing GOD would take me at this very moment. I know my family will be financially taken care of and they don't have to see daddy suffer or get mad at the littlest of things during an attack. I am scheduling an appointment with my Dr. to hopefully get a hold on this menace to my brain. I'm not afraid of a lot of things but I am scared to death of the next CH coming my way.
Jason
USA

I first had what i thought was a migraine when i was 16 years old, it started in the spring. It seamed that no amount of Excedrin would help, that nothing would help. I found myself going to the hospital every single morning for weeks trying to get rid of these horrible headaches. they just thought i was a junkie after a new fix, told me i just had a sinus headache and to go home and deal with it. i just thought i must be a big wussy, that i have a low pain tolerance. just as soon as they started they went away 3 weeks later. then at age 18 they started again. its spring march 19th to be exact 4am. this time more intense than the time before. I remember waking up with a distinct feeling behind my eye, a feeling i can never forget. at that point i knew what was happening to me they are back again. And again the ER visits resume with no help, so i seek a doctors opinion. He does the typical CAT scan and MRI rout and turns up with nothing, just treats it as a migraine. and tells me to take over the counter medicine.... again i am stuck.... wondering if this ticking time bomb in my head is just a normal headache and I'm just a wussy or if I'm right and i have a problem, i feel as if tho I'm dieing. but just as before the headaches stop within 3 weeks. this now happens again at age 20. same results as last time. then to now. at age 23 march the 3rd 2013, I wake up at 4am with the pain behind my eye. i know what is happening. i know the suffering i am about to go through. its all going to start again. within 5 minutes it hits me full strength. i assume its a sinus issue, i jump in a hot shower, the hotter the better. the burn seams to take my mind off the pain in my head and the steam seams to sooth my sinuses, 1 hour into it i cant shake the headache. i have my wife rush me to the hospital. they inject me with all sorts of of things Demerol benadrill Phenagrin and Xanax. it did not put a dent in my pain. at that moment i knew i was not just crazy, i was not having a migraine. i sought a new doctor. we did go through the MRI scan again to rule out cancer, and i understand that. no problems there. We did a scan of my sinuses for polyps. no problems there. then i told him, i have these every 2 years, they happen ever march, at 4 am every single day. and he stops and looks at me and says, you have cluster headaches.... I'm sorry Ive let you suffer though this... and i was like what are cluster headaches? and he explained them to me. i am on preventatives now. Topamax Terapamil. and Imatrex to try and cope with them as i have them, as well as Norcos for some of the pain. It seems to be working so far. im about 4 weeks into my usual 2 month cluster period, and i have not had one full on for over 6 days except for some of the shadows trying to peek through. this has been a nightmare for me for years. it has been very hard to explain my pain to my wife until i found this website. the only way i was able to explain it before was to say i feel like i have been shot i the head with a large gun.... I'm glad i have found this group.
Justin Hall <justin.cartunes@yahoo.com>
Stillwater, OK USA

Hello my name is Dave and as far as I know ive had clusters since time began. Im 45 now and they just recently came back after a few years of freedom and they are tearing my life apart, again. In all of my life I have never actually met another person who has experianced this true hell. Ive heard of others out there but never looked another in the eye, ive never seen another person who knows what this is like. Im in bad shape right now and this was only place I could find to say anything, to reach out to those that know the things there are no words for.. My heart goes out to my brothers and sisters out there that Ive never met but endure this to. Sorry im just in a lull between waves and not able to think much less express myself right now.
Dave Greaves <wildsuns@gmail.com>
Cypress, CA USA

I am a 28 year old female. For the last eight years or so I have been sporadically getting sharp, piercing pains above my right temple and right ear. They are intense, they come quickly then leave within a minute or two and are painful enough to stop me from doing whatever it was I was involved with to winch in pain. Does anyone know why this could be happening?
Michelle <heavymetalbettycrocker@yahoo.com>
Colorado Springs, Colorado USA

I don't know for sure if I have cluster headaches or not but an excruciating headache a couple of nights ago made me start doing some research and the more I read, the more I think I definitely have them. Thinking back now to 4-5 years ago...I would occasionally awake in the middle of the night with a "screaming" headache behind my left eye. of course, I would jump up and run to the medicine cabinet and then spend the next hour or so waiting in agony for the medicine to kick in. Evenutally I would fall asleep, assuming the OTC meds had finally kicked in since the headache just...went away. For the next couple of days I would have this strange sensation behind my eye that made me think at any moment, the pain would return. I wasn't keeping a headache journal at the time so I don't remember if they did or didn't. I always chocced them up to...."I just must be really tired (in fact, I referred to them as "tired headaches) or "I need to drink more water. I'm obviously dehydrated!" But at 1:00am night before last...I awoke with the most intense pain of my life (& I've had 2 children!). The pain was so insane that even inhaling and swallowing made me feel like my head would explode. I pressed my palm against my eye socket as hard as I could hoping the pressure would do something...anything!!!!! I finally woke my husband up and said that he HAD to do something! Surely he could make it better! All he could do was pray and ask if I needed to go to the ER. He said he continued to pray until I stopped writhing in pain and apparently fell back asleep. Since then, I have not had another attack but have definitely had the phantom lurking just beneath the surface. I am starting a headache journal so that at some point in time, a doctor can "officially" diagnose me. Thankfully, at this point, they seem to be pretty far apart and up until the most reason one, had held steady at a 6 or 7. This last one was atleast a 9...I am hoping that is not a sign of things to come. I am a missionary and about to head overseas. Hopefully European doctors are a little more progressive than US doctors and will be quicker in their response to CH than many of your experiences indicate. Thank you for all of your stories - helps me validate (in my own mind) my pain the
Crystal Freeman <crystal.e.freeman@gamil.com>
Lindale, TX USA

im about a year in now.seems chronic still waiting to see specialists butt not holding much hope after reading some of this.there are no words to describe. wonderful site tho. i hope they find something soon this cannot continue
Donnie <glleil@eastlink.ca>
truro, ns canada

Been suffering for almost 20 years, glad to find this site and to realize I'm not alone or crazy!
nicole miller <nicolemarie1230@hotmail.com>
fort collins, co USA

From 1995 to 2008 I suffered from episode clusters. At that time there were no medical journals or information for me. General practitioners had no idea and would prescribe migraine meds causing overdose clusters. In my years of suffering I have educated Md's to my condition and some have actually put me on the right path to recovery by chance. Today I can happily say that as of 2005 I have been free of hell.
tony hamilton <tony_hamilton@live.ca>
USA

I am 47 years old, and have been getting these headaches since I was 18. They weren't too bad in my 20's, but ramped up in my 30's and became unbarable in my 40's. Mine seemed to always happen right at the change between Fall and Winter. Every year - late October/early November I always start taking my Verapamil, because I know they are coming. Once they do, my episode lasts about 2 - 4 weeks (used to be 6 - 8 weeks), so I think the Verapamil helps. However, there is NOTHING that helps the pain once it has started. Something changed for me though... The other day, I started to feel my headaches come on, even though it is March. I didn't believe it at first, but last night it proved itself. I had 2 of the worst evers. Like everyone else here, I get the "Level 6-7" headaches throughout the day, and then between 9:00 PM and 3:00 AM I get the "Level 11's." I say Level 11's because Level 10 just doesn't explain it, does it? I have always wished that I could take the pain out of my head for just a minute, and put it into one of my friends, family, boss, etc... Wouldn't that be great? They would finally get it. I don't know about the rest of you, but I do get sympathy. Its just that that sympathy always comes with a hint of doubt. My wife shows genuine concern, but will drop comments like, "I've never seen any headache where hitting yourself is helpful." Or she will say, "Why don't you go down to the basement and lie down in the dark." Nobody gets it, and since the symptoms are so wierd, I can understand why they don't. We are in a special club here, people. Trust me, there is no ryhme or reason, and our Heavenly Father does not help. Sucks to be us.
Stewart Reeves <stewartjreeves@gmail.com>
Lake Arrowhead, CA USA

hello all. Another nite with no sleep, 8 attacks a day for 5 weeks, no end in sight. Im at the end of my strenght
peter jackson <pmjacks@hotmail.com>
hereford, uk

My ch started in 1968 at the age of 17. had no idea what this horrible pain was. Doctors were useless, looking back I think they thought I was trying to get out of the draft. I was frightened to death that I would get drafted and shipped off to Vietnam and get ch. I don't think I would be hear at 61 years old writing this. Ch got worse in my 20's getting several 6 to 8 week bouts a year. the helplessness that you feel is unbelievable, how do you explain the pain to a boss or loved one. If you use the word headache everyone says " oh yea I get those ". You feel guilty and even start to think you must be bringing these on yourself. The first person to mention cluster headaches was an eye doctor. He told me to go see a neurologist,at least then I finally found a doctor that belived me. I thought help was just around the corner. I was wrong, I tried just about everything Verpamil, ergotomine, oxygen, etc., even drugs like prozac, nothing. I would suffer through my 6 to 8 week bouts that were now getting 1 year, than 2 years than 5 years between headaches. As I got older, more time would come between episodes. In the late 90's I picked up an article that was in a Men's Health Magazine about ch. It mentioned Valporic Acid as a treatment ( Depakote ). The next time I started getting ch I told my doctor that I wanted to try Valporic Acid as the treatment. The ch ended about 1 week after I started taking the Depakote, this was the first time they had actually stopped after starting. Have not had another headache since, been almost 13 years. I don't know if it's coincidence or not. I will share with you all some of the things I did to help with pain and or keep the ch at bay: Hot, Hot wash rag right over my eye. I would run out of hot water most of the time. Then I discovered the blow dryer, that worked better and I never ran out of heat. I do not change my sleeping pattern, I think this is key to keeping them at bay. Go to bed , get up at the same time everyday. Having cats as pets helps with this as they take on your sleeping pattern and will wake you if you oversleep. Stop smoking if you smoke cigarettes, I think this is another trigger because of the constricting and dialating of the blood vessels. It tricks you body into thinking it's getting a ch. those starting the episode. I hope this gives you some hope that they can go away. It may be as I age that they just go away, which leads me to believe that the ch may have some thing to do with Testosterone levels or some other hormone that decreases with age. 12+ years and counting. Please feel free to email me any time.
Richard <dickgibby@cox.net>
Phoenix, AZ USA

Hi Guys, I am a 47 yr old female. Dx w/CH at age 19, but had then since age 13. At age 19 I was able to make an appt w/a great neurologist who new exactly what my headaches were,but he did say I was a very rare case - he only saw men with these and my age was also uncommon. I get them every 3 yrs like clockwork with up to 6 episodes per day for up to 3 months and then POOF they are gone. I am now currently in a cycle for the past 3 months. Nothing is helping to prevent them, not prednisone, or verapamil. Now up to 480 mgs verapamil a day for the past 6 weeks and 5 - 25 mg amitriptilyne at night to help stay asleep - NOT WORKING!! I am small 5ft 1 inches tall, at 105 lbs and the side effects of the meds make me feel like shit. As the gentleman below stated, they are definitley different this time, then all the prior ones. The times that I get them are different, and I can't believe I am saying this but they are more painful than the prior ones and last almost 2 hrs instead of the usual 1 hr. Imitrx is the ONLY thing that gets rid of them with the oxygen working occasionally. I just needed to vent as no one at my job understands AT ALL. And I work for a doctor. I handed in my resignation ONCE AGAIN as women can be real BITCHES. My boss semi understood but the 2 girls I work with made my life so miserable I had no choice. This happens to me often. If you looked at my resume every 3-4 yrs I am starting a new job. Everyone understands during the job interview as I always make it known that I get these but then when I finally get CH there is no understanding at all. I am so sick of this. Thankfully, even with these headaches I was able to pull of a great job interview (4 interviews for this one job)and I got it, I start this Tuesday. I am just hoping, praying, and wishing that they go away soon. My husband has been sleeping in a different bedroom since December 9, 2012 as the oxygen tank is in our bedroom. I feel so bad for him, (he is great about it, and totally leaves me alone when I get one, as he knows I hate anyone to see me while I am having a headache), but as you all know the guilt that comes with these headaches. It is really not only us that suffers but our family as well, they have to watch us go through these and want to help but THEY CAN'T. And a lot of the time we can't do the normal daily things we usually do because we are so so worn out and tired. I also never had children because I was afraid I would either pass the Ch to my child or that I would not be able to care for the child when I got them. Anyways thank you so much for listening to me and you and your families are all in my thoughts and prayers. Heres to pain free days!!
Linda <berkshiremtns14@aol.com>
Pittsfield, MA USA

I have suffered from Clusters for about 10 years, I am 37 now. I have had 6 or 7 bouts. The first bouts were the scariest, because I had no idea what I was up against. My last bout was 2 1/2 years ago. Yesterday, they came back! I now know that Oxygen works 100%, so my fear of the cluster is gone. While it is extremely disruptive, I am thankful I have figured out the proper treatment.
Andy Kilduff <andyk@westernarchrib.com>
Penticton, British Columbia Canada

I use Tegratol, seemes to work but find myself using it more than once a day. I have these things for years.
Doug Bates <dougbates1949@att.net>
Holt, MI USA

I'm sorry ...... But in a way it's comforting to know others (this many others) deal with clusters and actually realize how devastating they are.
Brian <cbmcgloghlon@gmail.com>
Portland, Or USA

Hello everyone, I have a 10 year old son who was finally diagnosed 3 years ago that he does get cluster headaches. He started getting it when he was 5 and no one knew what it was. He has been having them since yesterday and its been along 2 days. His eye is dropping and red he has been crying and screaming all night. To the people who have this did yall have it as a child and are there any tips?
Angela <confest2k4@yahoo.com>
Dallas, Tx USA

They are back after almost 10 years. This is a great site, thank you.
Mike <mikekelly36@gmail.com>
Syracuse, NY USA

hi guys... i have a brother ,he is 25 and this monster really ruined his life.it start it everyday in fix time bu 11 am..he rarely cry...i just wanna know at this short period time what can i do for him?what kind of drugs can we use that the poain stop? scare he kill him self..he lie in bed..quiet for 10 mins and suddenly slowly cry and i can feel in this short time he is challenging with this it.i scare he scare too.my contact:sarahsetayeshasa@yahoo.com plz keep in touch with me if u used any drugs that help u.
sarah <susan_smart83@yahoo.com>
tehran, tehran iran

I may have head pain at 6:30 am but it is gone by 7:25am, then it might come back at 8 or stay away until 10am... then it might re-occur at noon or 12:25 only to get really worse at 2pm... by 4 it's gone and at 5:10 it's back... then aroudn 7 it's waxing or waning... but the very worstest ones hit at 10 pm or 1 am...those ones make me cuss like a sailor i think, best I can remember... then I usually go comatose until 6:30 am when it can repeat or vanish... depending on the weather, how much MSG is in the water and just if the demon is bored or not. winks and hugs. I keep thinking the last headache is the VERY LAST one, and that they didnt' really hurt that bad, and then it will say, "ahem" and I realize it wasn't jsut a nightmare or bad memory...it really was that bad...and then i run straight to Father's arms, beg him to kill me or heal me...let him rock me until they pass, and just inhale and exhale til I have strength to put one foot infront of the the other. Been doing this dance since before 1997...that's when I started tracking the Big ones... but i remember some instances when I was a kid, making an excuse to not do chores, was I lazy or just in pain? and once I told my grandma i can't eat lettuce on ceratin days because it was so loud and crunchy It hurt, but she looked at me strangely and quickly chagned the subject... what does an 8 year old know about pain? was her expression. I want a cure for anyone who suffers from pain, but especially the clusters. there are some who face everyday in pain..and I did it for a full year back in 2004. I didn't drive, just in case it woud hurt bad; i put off chores until Saturdays, and then did ten minutes at a time with an hour or two of rest in between tasks... that was not a life and I pretty much explained that to god over and over again until he lifted whatever it was off of my head... but now I am in these mini battles,and I still try to explain to God,"Yes, life is a great gift, but if I have to go through this much pain i would like an exchange..."winks and hugs. One day, when I missed church this August, mom came home from church and said, "jesus said go sit outside and talk with a little while." and I kind of knew she was daring me to...but my head hurt and I was willing to take the bait. I raced out and sat on her porch swing, with eyes nailed shut to keep the darn light from making the head pain worse. and a mini movie screen opened up. it replayed the news blip of a young teen boy who was shot inthe head with a spear gun. how the neighbor on shore heard him saying it hurt, and told him not to pull it out sohe wouldnt' bleed to death...the neighbor had shuddered just tellign the story to the camera, because the kid was in such agony and pain. Well the kid is recovering, got his mind whole and is doing physical therapy... and a little while past and Mom came out. she asked me if i had heard anythign the LORD. I coudl barely talk, because I was clenching my jaw trying not to moan and whine about my head pain. but i focused on the pain and got good and mad at it and spoke. "Jesus reminded me that people go through many horrific and painful things, childbirth...traumas, even that boy shot through the head with the spear." she nodded and waited. "The miracle isthat we survive..." and that said i left the light, the outside, the swing and manovered my way to bed to pass out for a few more hours...oh and to survive. (picture me giving weak thumbs up...or maybe a weak waive and whispered, yeay.) God is love and healing is real I know these things. i rejoice every time the headache pain ceases because I know each time it is a real miracle. Other diseases have you bed ridden or steal your life..so it can be a relief to have the remisions...but at the same time, they resurface and at times rather meanly to steal life, hours, days, work, fun...it seeps away while the beast stomps on the blood vessel trapped behind the eye and the sinus....and there's no point. i am not learning anything, no one gets bonus points for suffering more. I feel like a loser. when alone I can rant rage, pace, pout, moan, have a fit...out with family and at work I stuff it down, bit my lip, tear up and keep moving so that they stop giving me that look...stop asking me what they can do for me...unless they can trade heads or recommend a good lobotomist...nothing is gonna help but the darn clock moving forward at a quicker pace. big hugs, this too shall pass. I've been dealing with this since before 1997, that's when I strated tacking the worst pains and one dr. suggested they were tension headaches. She gave me tylenol 3 with codeine...and the pain laughed at them. My husband had back surgery and they gave him Darv and perc...and I would be loopy, dizzy and not really care, but if hubs asked, I was still in super-duper agony pain. Once I was under anestia, and came out of it with headpain, and the nurses asked me what was wrong where i hurt (the surgery nowhere near my head. I wasn't even present yet, but tried to explain i get god awful cluster headaches...and they made tssking noises, so i assumed i'd been wailing and weeping as i woke from the drugs....they even asked it i wanted anythign I said, "nothing helps" so they shook their heads and tssked some more....
TJ <dancenshout2002@yahoo.com>
Rochester, NY USA

It sucks to be us!-)
Richard Rossavik <rravik13@gmail.com>
Gresham, OR USA

I am thrilled to find this site! I had finally figured out, through much research, that the headaches I had suffered since I was 14 were indeed clusters. Most of the doctors I meet don't even understand the difference between a cluster and a migraine. What makes it especially difficult, is my pain actually causes me to vomit.. which makes it look like a migraine. From the age of 14, I had these randomly occuring, wake-me-out-of-a-dead-sleep headaches, which I described at the time as a small man behind my eye with a hot poker around an ice pick and jamming it all around the right side. I don't get them as often as some other people, thankfully.. but boy do I ever understand that pain you are all describing. I had two children and begged to have more (naturally of course) because it was NOTHING compared to the excruciating nonsensical agony of the headaches. I would love to be in touch with any other ch sufferers! Feel free to contact me!
Ayesha H. <peacepipea@yahoo.com>
Chandler, AZ USA

I started to get headaches when I was only in 2nd grade. I knew I was special because I was the only kid that got them that bad. They said they were just migranes, nothing medicine can't help. I'm 19 now, it took the doctors until I was a sophomore in high school to figure out what it was. I'm scared. I go through each day praying that I don't enter another cycle. I feel like i'm the only one. Before college I would miss a lot of school. My mom seemed worried, my dad told me to suck it up, be a man, stop wimping out. He doesn't understand, my mom barely did. My three younger siblings hug me and say everything will be okay, yet they don't dare play in my basement where my room is when i'm dealing with a attack. I would lay there in bed crying, head pounding. My thoughts all jumbled because of the pain. I would kick, scream in a pillow. I would jump around and punch myself in my head. I would squeeze my head like I was going to pop it like a balloon. Nobody in school ever understood what it was like. Sitting in class tryng to focus. For me it was like a little kid trying to read for the first time. Nearly impossible. My vision becomes blurred, one of my eyes start to swell shut, I would quick run to the nurse and take my medication knowing full well it won't work. Sometimes I would throw up. I lay there with a heat pack and ice trying to find some way to subdue the pain long enough to get a simple text to my mom to come get me. The nurses would sit there and witness me rolling around on the cot, wimpering, and kicking. They had no idea what to do. Hell i'm 6'8 and 210lbs I don't think anyone has a true idea of what i'm going through. When i'm at home my parents now have gotten to the point where they can't take it anymore. Some support right? They have started to care less and less. I'm laying there in so much pain and all they can do it watch. I just need someone to listen, someone to help, someone to talk to. Sometimes I just want to kill myself becasue I physically and mentally can't stand the pain. It would get so bad that during basketball practice I was so tired from that attack around 3am that I can barely hustle down the court around 4pm. It sucks to think that I can't live a normal life like all my friends because at anytime I could instantly get them. Some of my friends have seen a little bit of it first hand but still no one has seen the behind the scenes show. I'm so scared to get one right now, i'm living in the dorms and my best friend is literally a foot away. I don't want him to see me like that. People been calling me a "pussy" for years. I can't even describe the pain to them and I would never wish for them to get one. This is my burden to bear. All these years i've felt like some outkast living everyday day in fear. I've been fine for almost a year now but I still have been getting headaches. Each one scares me worse then the last. This is my first entry, hopefully I haven't said to much. I've been waiting for years to express myself and I have kept quiet for too long. Thankfully you all understand in some way. I've read a lot of these stories and I will keep all of you in my prayers as well. It gives me some hope that i'm not the only one suffering and that one day, one of us will figure something out to help us all out. After reading a lot of these entries from what i've gathered i'm the youngest one by far and I look up to all of you older then me. It helps me to know that i'm not the only one and that someone out there can relate to what I deal with. Thank you for reading this. You are all in my prayers.
Josh Johnson <jaj1193@yahoo.com>
Stillwater, MN USA

I was not diagnosed until about three years ago. Up until then, I would try self-medicating with sinus meds. Three years ago they became dabilitating, I even had to quit work because there were days and days I could not work, either because of the headaches themselves, the high dosage of drugs, lack of sleep or "hangover." After trying a lot of different meds and trips to ER for knock-out shots, my chiropractor finally suggested diet drinks might be a trigger. I stopped drinking them and almost immediately the headaches ceased. Now two years later they are back (I do not eat or drink anything with artificial sweetner). I know we are about to start the regimine again, drugs, bed, pacing, panic, crying, praying begging. I'm scared!
Leslie <slchilders@hotmail.com>
Amarillo, TX USA

I'm glad to see this site is still going strong. My husband hasn't had an attack for 3 years now and honestly, I'm afraid they are around the corner. This will be the first place I come to for all the wonderful suggestions and support if, heaven forbid, he starts his episodes again. Good luck to all who suffer and care for sufferers!
Carrie
TX USA

Who knows where I can. Try and get some of the magic mushrooms that worked with these cluster headaches email me if u know where stehall50ngoing@gmail.com
Steve <stehall50ngoing@gmail.com>
Tucson, AZ USA

Well, here goes...I have been in remission for about 5 years now and this is the second time.I am 33 years old and the headaches started when I was about 19...I had no idea what I was in for the first time I suffered from this terrible pain...I lost my job due to the fact that I was no capable of being able to show up everyday due to this "monster" inside of me...I moved back in with my parents and would have attacks 5-6 times a day for hours at a time...This is when I was diagnosed with this incredible disease...I thought "why me?" many times and had many horrible thoughts...This went on for about 6-8 months, daily, it had consumed my life...The next onset wasnt for about 5 years...When the first one came back, I knew I was in for a long hard few months to say the least...The headaches weren't as frequent, but the pain still seemed to be as punishing...I took my 6-8 months of grueling, PAINFUL, days and nights with the help of IMITREX (which is a lifesaver) and have been in remission since...I have had some scares here and there, but nothing has fully developed back into what I had experienced in the past, thank god! I am greatful that there is a website fully devoted to the sufferers out there, like myself, to share their stories. It is a horrible "disease" and I wish you all well through it...This is not a pain that I would wish on anyone, Good Luck and I hope a cure is found soon!
Nick Botta <nickbotta6279@gmail.com>
Milton, NH USA

Husband sick since an accident where he crashed heads with another man during a church softball game in 2001. He is 56 now & has trigeminal neuralgia... migraines.... & cluster headaches that all bounce off one another.He is in constant pain..I can hardly do anything to help. He has tried to overdose on his meds 3 times and he ususally ends up encapacitated in his Dr. office with shots & oxygen & sutimes fluids because he is slowly losing weight where he can hardly eat for the exorcist type vomiting that comes occasionly if went cant get IT under control. He has been to Duke & Baptist & undergone numerous procedures but they all seem to have made things worse with the exception of oxygen/pain meds/ & knocking him out to sleep. We hardly have anyone to talk to any more because he is sick all the time...............Any words of encouragement?
donna chambres
hudson, nc USA

I've had headaches longer than I can think back to and since my mom and both sister suffer from Migraines I just assumed I was experiencing the same thing. I always felt they were different, they would come in waves and knock me out one minute then fine a few minutes later. I thought it was because I didn't drink enough water, or I didn't eat often enough but they had 'more' to them. My family would always harp on me saying 'you always have a headache' but from what I am now learning and only recently diagnosed is both a relief and a huge burden. I have thought for too long they were related to something else. I've had 3 or 4 root canals that I now believe were not necessary. Sure I was exhibiting other symptoms but it was the tooth pain that brought me to the dentist. And I thought I had a sinus infection...that would not go away so I was put on several rounds of antibiotics...nothing was helping. Then I met my doctor last year and I was in for what at the time seemed like the worst headache in the world. I was rocking and pacing, had my sunglasses on and had my arm squeezing my head thinking it could be helpful. She said 'looks like a migraine' gave me a non-narcotic pain shot (I can't remember the name), it seemed to help right away but I left and the headache was back within 10 min...so again I thought 'well I didn't rest and give it a chance to work'. Then the 'event' that ultimately brought me here. December 17 after suffering with my 'contraction like' headaches for 5 days I started to lose it. I was being short and abrupt with my co-workers. I wore my sunglasses and my hooded sweatshirt and looked like I was about to commit a crime, my very thoughtful boss (I'm serious she's awesome) said 'what's going on, are you okay?'. And with that the flood of tears came, I told her how awful it was how just over the past 12 hours I'd consumed more water than i had in all of 2012 (i had no idea why it was working but i would get momentary release, as if there was no headache at all). Then i went in to see the same doctor as last time and within ten minutes she said you are having a cluster headache and by the looks of you, you are right in the middle. She gave me dilouted (i'm sure thats not spelled right) and it still didnt work right away, about 40 minutes later i was finally able to sleep...not solid but enough. These are awful and i can't belive how much i didn't know. I'm relieved im not alone and sad that there has to be a website devoted to this.
Arianna Stacey <Arileighsd6@aol.com>
Tracy, CA USA

I have suffered/lived with CH for over 20 years. My last cluster was 3.5 years ago...thought I was out of the woods...but alas...here I am again. *sigh* Anyway, nice to know there are sites like these to visit and gain a bit of insight. Hard to explain the pain to folks that have never experienced "the devil"...nice to have a voice. Thank you. Am going to get some O2 tomorrow and give that a whirl. I take sumatriptan at the onset of each bout (50mg) and find that they shorten the attack nicely. Its all I have. Good luck all, I will keep checking back for updated info.
Keeley <Yukoner73@hotmail.com>
Whitehorseh, Yt Canada

You know what really puts me over the top is, just when you think you've reached your threshold of pain tolerance a spike happens that goes way beyond anything you can imagine. And not just 1 or 2 but 10 or 20. Then a couple of minutes later it happens again and again. What gets me through those spikes I don't know. I ask myself why didn't I pass out? I pass out at the sight of my own blood! why not with all this pain? Anyway, I just spent the last 45 minutes experiencing this crap and I thought I would share. Nice guy, huh?
Richard Rossavik <rravik13@gmail.com>
Gresham, OR USA

My CH Friends there is hope on the horizon. There is a pharmaceutical company doing research. Entheogen may be doing clinical trials for a drug called BOL-148. I encourage you to check them out at http://www.entheogencorp.com/headache-sufferers/ . Rich
Richard Rossavik <rravik13@gmail.com>
Gresham, OR USA

Have had clusters for15 years. Oxygen works but comes back next night.
Elaine <c24flavor@aol.com>
ny USA

I am a 10+ year sufferer of cyclic cluster headaches (about every 2 years). The best relief I have gotten (from my neurologist) is doses of oxygen (8L/10mins). It doesn't stop the cycle, but cuts the flare-ups down and offers my psychological relief during the cycle. Good luck, Eric Levin 480 Hillcrest Road York PA 17403
Eric Levin <eric.levin@yahoo.com>
York, PA USA

Suffered off and on for 30 years, luckly only about every 5 years for about 2 - months. I say luckly but in a bout right now, so I don't feel real lucky now. Thanks for this site and the infoit gives, not alone.
Robert Ockuly <raoelec5403@aol.com>
Parma, OH USA

I'm 46, female, been getting cluster headaches since I was 12. Going through an episode (on week 3 now) and so sick of it! I am lucky however as I have remission periods of 2 to 4 years. Looking forward to the next one!
Kathleen <kathleen@adolenceassoc.com>
san jose, ca USA

Hi All, My first symptoms began when I was 18, about 16 years ago. I had no idea what to make of them. I was only recently diagnosed with CH two days ago, and this is the first I am reading about the condition (and I am certainly not happy to see what I am reading as far as the diagnosis .for the love of God, why me!!) At least now I know I am not crazy and I m not the only one. I originally thought it was from my lifestyle when they first began, I was a freshman in College, lots of alcohol, smoker, etc. Suicide was a thought back then as it is during every episode since. Luckily for me, my cycles last only 1-2 months, then go away for 5-6 years, then boom, here they are again. I have been suffering once again for the last three weeks, hopefully they end soon. I have again changed my lifestyle, quit smoking, drinking since it seems to trigger the most painful headaches. And as usual, nothing is working. I have been taking Tramadol, which seems to mitigate the pain after about 30 minutes. I have also experienced the crazy behaviors during episodes, which scares the people around me. I usually seek isolation, and I have had girlfriends and co-workers in the past think I am faking my condition. I WISH!!! I was not surprised to read that this is the most painful condition known to mankind, or the Devil himself, because that is how I would also describe this condition. I am going to try the WWW treatment since it seems easy enough. Any who, I wish you all Godspeed and a better day soon .
Mike S <mtstine@gmail.com>
Reading, Pa USA

Hello, I have been suffering cluster headaches for over 8 years now. The CH seem to reoccur around the same time like clock work. T know when they are coming on, since my symptoms are jaw pain, sinus and sharp pain on the right side of my head. All the usual tests were done CT scan and MRI to rule out any other issue. I really feel desparate when I get these and pray they will end soon. The CH usually last 30-40 days and I control the pain with extra strength advil. I always hope after they go away that it is the last episode but they come back. I have been seeing a naturopath and having accupuncture and homepathic remedies. I don't know if I believe in all this since it has not helped so far but always hope for the better day. Julie D
Julie D <jdiloren@gmail.com>
Toronto, On Canada

Hi fellow sufferers, I have been suffering and trying to deal with CH for 30 odd years, in 1980 I visited my G.P complaining of servere pain behind my right eye and down the right side of my nose, I was told to take painkillers and try to get more sleep,two days later and after 48 hours of not being able to sleep,eat,or function I returned to my G.P begging her to send me for further tests which she refused, at the time I had private medical insurance and arranged a consultation with a megraine specialist who immidiatly refered me to his collegue who was researching CH,it came as a big shock when he said you have the classic symptoms of CH and that at that time there were limited understanding of causes and treatments, wow I thought what happens now and more impotantly is there anything that can take away THE pain, over the next few months I was precribed Lithium which did help but caused a number of side effects and had to be stopped,then all of a sudden the CH stopped, hoo-ray I thought and for 4 years no pain, then without warning in November 1985 BANG they were back this time with a vengance,episodes left me totaly debilitated and exhuasted and began to affect my employment, then in March 1986 they disappeared and did not return until November 2001 and lasted two weeks before going once again, but alas in November 2012 they are back and are the most servere ever, I am currently unable to function during an attack which lasts between 2-3 hours but requires 10-12 to recover from, my only consolation is that history suggests that this will be over soon and life will be back to normal but until then who knows
Tony Mills <tonym@fairfaxmeadow.co.uk>
London, UK

I have been suffering with cluster headaches for 22 years, in that time I have been told to "pull myself together women get headaches all the time". Ihave heard close friends say "oh shes got one of her headaches again" and the list gos on. My doctor who first diagnosed was very caring toward my condition and tried his best to help. That was 20yrs ago, since then I have struggled, and still do today to get meds, it has affected my personality to the point of being anti-social which is a side effect of long term suffering from cluster headaches.Don,t let the doctors get away with this kind of treatment INSIST on a formal diagnosis,you are not a wuss,nor are you making a meal out of a little headache.
Penny Papp <PennyPapp@googlemail.com>
milton keynes, bucks England

Updating entry since attending convention 2000. Now 46,chronic last 10 years,31 year history.Suicidal and many psych holds.Will eventually suicide.Pinon hills ca, open to all that need help/want contact.
patrick jasper <clustersurviver@yahoo.com>
pinon hills, ca USA

Hello I am a 39 year old female and had my first cluster headache in June of 1995 when I was 22 years old, had them pretty consistant for three or four years and then they just disappeared or so I thought, they returned approxiamtely six months ago with a vegenace. I am so grateful that I have found this site as I do not personally know anyone besides myself that has them.
Lori from Hamilton, Ohio <loriamay@netzero.net>
Hamilton, OH USA

Sunday, 10/21 - 4th night of third episodic CH event that I can recall. Trip to ER Friday morning was pretty pointless. The O2 seemed to help but was down to a 5 by that time. The meds they prescribed (Butalb-Acetamin-Caff) didn't work. Stopped by a "doc in the box" yesterday. He prescribed Sprix (nasal spray). I had two back-to-back 10 skull splitters last night but did not take the Sprix until I felt the on-set of the 1st one. Seems to help take the edge off but can only take for 5 days. I used it prophylactically today, once every 6-8 hours today and have managed to avoid a 10 so far. Felt the shadow a couple of times around the 5 hour mark. Feeling a twinge now at 11:15 PM. Last dose was at 7:00 PM so can t have another does until 1:00 AM. I hope I make it that far. Wish me luck.
Keith <keith6283@att.net>
Arlington, Texas USA

Hi at ths very moment it is 03:05am in south africa. My husband has a ch & insisted on driving himself to the hospital. Ths is the frst time he goes to hospital, he normally uses caffergots, bt we've been told they off the market. I feel so helpless, nd I'm so worried about him. What cn I do as his wife, to give him more support?
zzzzZahira Fritz
z, South Africa

I am trying to find a Demand Valve Mask that can be used with my current home oxygen therapy setup. I use the optimask, a disposable humidifier, 'E' bottles, and a 25 lpm regulator, but am having a hard time finding a demand valve mask that I can use in place of the optimask. Which as a side note, the optimask is awesome compared to the cheap non-rebreather masks that the oxygen company supplies me with. I am just looking at the next step up. Please send me an e-mail if you know where I can purchase the demand valve mask.
Scott David <supersportscott@hotmail.com>
Buckeye, AZ USA

I am trying to find a Demand Valve Mask that can be used with my current home oxygen therapy setup. I use the optimask, a disposable humidifier, 'E' bottles, and a 25 lpm regulator, but am having a hard time finding a demand valve mask that I can use in place on the optimask. Which as a side note, the optimask is awesome compared to the cheap non-rebreather masks that the oxygen company supplies me with. I am just looking at the next step up. Please send me an e-mail if you know where I can purchase the demand valve mask.
Scott David <supersportscott@hotmail.com>
Buckeye, AZ USA

My doctor doesn't believe me, (even with months of food and h.a. journals). My kids walk on egg shells afraid of hurting Mommy's head. My husband is probably thankful to be at war or in the field during the majority of the h.a. instead of seeing me in so much pain with no relief in site. My pain is not in my eye, therefore "it can't possibly be c.h. Not to mention you are a female." However the pain that makes me want to cut myself or harm others, begs to differ. The excruciating torture that has me prowling the hallway, chugging water, crying, squeezing my head like a vise with my hands, begging the e.r. to make it stop, swearing on all that's holy anything humanly possible to make it stop, threatening a kid squeeling outside my house I was gonna punch him in the face if he didn't shut the ef up; well all these symptoms say it may be more than a figment of my imagination. I was once tazed in the arm as a joke. This feels like that tazer... times 100... in the back of my head; or behind my ear, or under my jaw. I do get auras sometimes (with the less painfull ones that last long), I lose most vision sometimes too. I've tried several meds, so far the auto inject Imitrex helps a bit. I changed my diet, my habits, my lifestyle, and still no one believes my pain. "It's migrain, it's sinus, it's tension, it's all just in your head, etc". I don't wanna die so much as I just don't wanna be alive anymore. Does that make sense. I'm afraid to sleep, eat, leave my house because I may get a h.a. Most are like clockwork and between mid march and early dec. I just don't know how to make these military dr.s help me.
Ashley <mkashleyriley@yahoo.com>
Fort Lewis, Wa USA

Hello. I am Kevin. I suffer from chronic cluster headaches.
Kevin <Klake440@gmail.com>
Bedminster, NJ USA

Call if you need help. I've been getting cluster headaches for 28 years, eposodic in nature and am in a cluster period now. We can talk about traetments that help. Ken 607-221-1219 ksumma@stny.rr.com
KEN SUMMA <KSUMMA@STNY.RR.COM>
BINGHAMTON, NY USA

Hello, I believe I had my first attack sometime around 2004, I remember having my worst headache ever but it only lasted a few hours. Then in early December 2008 I was in a week long training class in Orlando and I had headaches all day every day for weeks. In January 2009 I was diagnosed with Migraines by my doctor and he gave me Topomax, after about 2-3 weeks the attacks went away, but now I know it was just that my cluster headache cycle had ended, it wasn't the Topomax. In early December 2010 the headaches came back. My doctor didn't know what to do som my sister referred me to her neurologist that she was seeing for migraines. I talked about my symptoms for about 2 minutes and he said he knew what I had....Cluster Headaches. He prescribed me prednisone and the headaches were gone the next day!...only to come back in early December 2011. My neurologist again prescribed prednisone which helped again but the cycle hadn't ended in late January 2012 and they came back. At least I could count on the cluster headaches only happening from December - January, right? until this year, they came back July 11. I got another prescription of prednisone and it helped but they never went away. Here it is September 28th and I still have them daily. I have some success with keeping them away from the excruciating pain levels by alternating ibuprofen and aspirin but they are always there.....lurking in the background ready to explode. This is the first time I've ever written down my story, I have mixed feelings about it, some relief from writing it down and some stress from having this condition to write about. I'm hoping that meeting others with cluster headaches will help me deal with it, other people just don't understand how bad they are. Scott
Scott Brunson <scottbrunson@bellsouth.net>
Flowery Branch, GA USA

I have had severe HA's for several years, but was just diagnosed w/ "Cluster HA's" 2 mo's ago. My HA's started getting much worse after I was hospitalized for Pneumonia & Pulmonary Embolus (blood clots in lung) in March. They are located in my Left eye & are very debilitating. They first start w/ a pulsing/throbbing type pain that rapidly progresses to a sharp stabbing pain that makes me lose my mind. It is very hard to keep my composure in front of my wife & 5 yr old daughter. I have to wear sunglasses & earplugs. I use an icepack on my eye as well. I even use 15ml O2 for 15 min & that only takes the pain from a 10 down to a 7. This last one I have had for 8 days on & off but never dropping to less than a 5 pain. My Neurologist sent me to the ER where they just gave me some toradol & benadryl, then sent me home w/ fiorecet, which didn't do much. This has been a living nightmare that I keep hoping will end soon, but doubt that it will. I am supposed to meet w/ my Neurologist tomorrow, but not sure if that will do much since he is very unfamiliar w/ Cluster HA's & doesn't know how to treat them. My depression has been getting much worse at night, especially when they wake me up in the middle of the night. I feel like I am fading away & just wait for the next attack to hit me & tear me down even more. I really hope that this will get better soon.
Ryan <alevy8@gmail.com>
San Antonio, TX USA

It really is a blessing to have found this website. I have had clusters for about 10 years now. I was active duty Navy when I first got them and luckily the Navy doctor diagnosed clusters very quickly. Like most of you, I bounced around various medications but mostly landed on triptans (zomig at first, then imitrex when generic). One of my friends from the ship told me he also had cluster headaches and about this website. I am glad he did. As I read the other entries and quotes from the intro page, I kept telling my wife, "This is me! This is my story!" It really is wonderful that this website exists. I intend on spending a lot of time here learning of alternatives. God bless!
Scott David <supersportscott@hotmail.com>
Buckeye, AZ USA

Hi guys, I started with CH 3 years ago now but this year I'm into my second day of my 3rd cycle. It's bad enough that I've moved to Russia and have to try and convince my teachers I'm not going to just waste their time and not come in to College for the next four weeks, because every day at 2pm I get an attack - who would believe that. But not seeing my new friends is damaging my social life. I'm so glad I found this sight because I'm only 19 and I have the 'Oh you have migraines' line all the time which drives me crazy. Thanks for reading.
George Kirkman <kirkman17@gmail.com>
Akademgorodok, Russia

Hi my dear friends, I don't know why i feel to share my story here, maybe because I found some of the messages quite useful and encouraging...so, here comes my story For me all started three years ago when out of nowhere, I woke up with an unbearing pain under my left eye. The intensity was extreme and i ended up in emergency hospital, being convinced I had a stroke. It continued for one month or so with three attacks per day,almost at the same hour, no point mentioning here the madness of thouse hours...you all know well. I don't remember exacly if the neurologist which i had seen clearly indicated the diagnostic of ch, but definately she didn't told me about the hell in which i just stepped in. I can't blame her for not doing that, they are the only people who can understand whatever this condition is and sometimes i guess is not easy to tell a youngster that this is not an accident, but is a condition without a cure, and will become a part of your life. Anyway, after one month or so it was all over, until recently. I need to add that my chicle just ended, and I am now trying to understand whatever this means and how it will influence my life further on. My treatment so far was Indometacin, Sumatripan, and lyrica, but honestly, nothing worked. i an sure that no painkiller know to man will work, if it won't knock you inconscious. they pain is simply to strong... When the second chicle started I instantly recognised what it was and after one week of moderate intensity, if i can call it like this, i made the preparations for the hell season. it might sound strange, but i made sure i had a stash of drugs, no firearm close to me ( i use to hunt in the past) and reduced my social contacts. i was convinced it won't be useful to be seen in this condition...and luckily I was greeted with 3 weeks of from work. most of the people won't understand this. a headache is just a headache, for most of the people... the only thing that worked was my own strategy of dealing with the pain. Find a dark quiet place, take 2 chairs, one for me and one for the devil. invited him to sit next to me and shoot his best. invite him, it will be there anyway...challenge him, it makes you feel prepared and strong enough to deal with the pain. you will be chursing, crying soon enough, but he can't kill you. in 45 mins I am always fine, he will go away as quick as he arrived. until next time. it is now over and i almost can't remember the intensity of thous damned hours. after the worst attacks i remember finding myself walking the streets with a feeling of superiority of some kind...like a hero who just comed out of hell alive. it made me feel confident that we are a handfull of people who are lucky enough to go this far. no point asking yourself what made you deserve all this, it won't help. rather to imagine yourself one of thous who were chosen to meed the devils unleashed in this world.strong enough to set the standards... for me it helped, hope it will inspire you to do the same. this is our life, after all. best Poly, 29 years old male.
poly <lucianpaul@hotmail.com>
tm, Romania

Thank you so much for the Web site. It has been so awesome!!! Last night was the first night in 4 weeks and 2 days that my husband Doug as not had a headache. We are hoping the Cluster is broken!! We have taken a variety of treatments and tried to mix and match a treatment for him. The newest thing we added was the pure oxygen and the liquid melatonin. Everybody keep posting their own treatments and stories. It has been very helpful. He has had these since 2004 but the clusters are usually around 3 years apart with intermittant regular migraines scattered t/o. He did have a cluster last year though. He also appreciated knowing that he isn't "crazy". Everybodys stories are different but the headache and characteristics are on the money of how he has felt. Thanks
Doug <dssjmurray@gmail.com>
Anthony, KS USA

Hi Clusterheads The cluster demon has haunted me on and off for 20 odd years and only recently have I managed to get help. I won't go into details about the pain - since most if not all of you know what it's like! Suffice to say I'm off to see my GP today for O2 therapy and Sumatryptan (Imigran) injections/nasal sprays. Don't give up trying to find a medication that works for you. Ditto a sympathetic doctor! If they just dismiss your condition as migraine (and you're convinced it's CH instead) either ask for a 2nd opinion or ask them to look up CH online. The condition exists. We are the proof! Good luck guys.
Heather M
UK

hi..,I got my first taste of clusters 3yrs ago whilst visiting a friend in ireland.Once back to the uk I was diagnosed.They passed after about 6wks.They returned 2wks ago..!!!Ive got some great tips and information from this site and just want to say thanks.!Im praying this time follows the same pattern and tyhey go away soon for another few years...?My heart goes out to anyone unfortunate enough to have them more often.
emilie <emilie.toms@yahoo.co.uk>
bristol, uk

what medication is good for cluster head aces
joe <joe99@bell.blackberry.net>
goderich, on canada

I have had CH for aprox 10 years and did think i was alone. Thought they were just a migraine. I found this site on accident and have felt alot of support from reading today. Just 2 weeks into this cluster and already desperate for help. Found many helpful things will try them. I find some relief by taking Maxalt, sitting in the dark inhaling deep exhaling slow. Thank you for the support and may God be with each of you in your dark hours.
Doug <dssjmurray@gmail.com>
Anthony, KS USA

My clusters began in earnest in December of 1974 and stayed with me through the fall of 2005 when they suddenly blinked out over a few weeks period of time. During my 30 plus years of headaches I went from once a year (for the typical three or four month period) to twice a year. In the last four years they came every day. I was a mess. In the beginning I had one doctor tell me that it was not possible to have a headache on one side (ah, the early years). Overtime I found assorted doctors that prescribed all the usual drug therapies. Large doses of Ibuprofen. Beta blockers. Drugs I don't remember the names of. I had CAT scan and MRI's. I had actually hoped for a tumor they could cut out. Eventually I found Cafergot and it worked! Plus oxygen. A great combo. Problem was, I used the Cafergot every day toward the end. A big no-no but what choice did I have? And then something made them pass. I've never gotten any answer to why but then CH themselves have no real why. I loved the last five or six years. Twinges of headaches that never took always left me uneasy but I never fell back into the episodic days/weeks/months of pain. And now they are back. I am so sad at the prospect of what is to come. Years ago when I discovered ClusterHeadaches.com it gave me strength to know that I was not alone. Kind of funny in a way to find solace in being with a group of sufferers. And even though I do no care to once again belong with you, I want you to know that somehow, in some way, it gives me comfort to know you are all out there.
Wynn <wynnh@comcast.net>
Tucson, AZ USA

I was diagnosed with migraines as a young child, according to my parents. They were so bad that for weeks at a time I would complain of all over body pain and fatigue along with severe one sided headaches. These headaches have always woken me up out of a sound sleep and then dissipated into a low dull ache. This vicious cycle lasts for weeks at a time with no relief from oral Imitrex or Maxalt. It seems like these episodes hit me about every 2 years and lasts up to about 6 weeks each time. This current episode started July 14. I went into the doc thinking it was a sinus infection, as it was only on the left side behind my eye and into my jaw. Again, the headaches were waking me up at 0400 every day. After a round of Z Pack the headaches still continue to hit me in the night. This morning at 0400 I woke up feeling like my eye was being cut out of my head and someone was stabbing me in the left, top of my head. All I could do is rock back and forth and cry. I am utterly exhausted and every muscle in my body hurts from tensing up so much during these headaches. I have yet to be diagnosed as having cluster headaches though. I went to see a new doc yesterday, but still no answers. I am keeping a journal. Everyone keeps saying the same thing. It is just your migraines. I just want the pain to go away so that I can get back to my life. If it is just a migraine, why are they hitting me in my sleep, and why don't they respond to the oral migraine medication? I feel defeated!
Jade <Jadednotion@yahoo.com>
Pasadena, MD USA

ive just been load i been having cluster headaches from a eye doc. went blind for 1.37 hrs. im having 2 to 3 a day , 1day aweek of peace maybe 2yrs of this now 4jobs and 4girlfriends 3citys somany meds. ive changed things but it allways there even when it not.
theo whitten <theowhitten@yahoo.com>
Abilene, TX USA

It does give me hope reading all these entries that I'm not alone, its really hard to have your friends and families empathize with you, because they look at you like " how can something really be that painful?" I personally have spells about once a year for weeks at a time. Usually end up in counseling to try to deal with my outrageous thoughts of not wanting to continue on. The pain is just undiscribable as you all know, very hot showers, multiple prescriptions of relpax, prednisone, verapamil, not sleeping, scared to sleep, scared to leave the house the list goes on... I'm going to try this water thing...what else do I have to lose?! We need a cure!!!!!!
Lyndsay <Lyndsaycstone@yahoo.com>
Los Angeles, Ca USA

Unfortunately, after 5 years of no episodes, the demon returned. Fortunately, I was able to get into a neurologist almost immediately and she was able to get some abortive drugs on board quickly. Prednisone and verapamil with the addition of topamax seems to be working. Oddly enough, an MRI (26 years since first episode) revealed an abnormality with my pituitary. Normally, you don't brag that you have a tumor but at least it has given me some relief knowing that there is a physical cause. Time will tell. Anyway, I feel for each of you and I am sorry. Please all of you take care and keep fighting. There is hope for all of us. God Bless!
Rob <rwerking4@msn.com>
Aurora, CO USA

Bless all your hearts!! I'm so sorry for your pain, I feel like a sissy to talk about mine after reading your posts. I have the headaches, but mine last only a day or so and only occur twice or so a year. Weather changes used to trigger them, but now I have no clue what does. I have the true CH symptoms, except for the frequency. I understand the need to bang your head and squeeze it til it bursts. I'm the only one I know who has these, so I was happy to find this site. I'm hoping they find a miracle drug soon.
Dena Rymel <denarymel@ymail.com>
Valliant, OK USA

I found a cure for my headaches!!!!!!!!!!!!!!!!!! I have been suffering from cluster headaches for quite some time now and recently found something that works for me, I hope it works for everyone with this horrible affliction. I bought a bottle of "High Concentration Stabilized Oxygen" the brand name is Oxygen Supreme. I found it at the local health food store. A 2 ounce bottle is $16. It is tasteless and with a few shots under the tongue when I feel the "Twinge" of an upcoming outbreak, the headache doesn t reach full steam and subsides! I did get a headache while out shopping, and it was in full swing by the time I got home. It was a bad one too. When we got home I took my bottle of oxygen and headed for the bedroom. Shut the curtains and laid down. I kept putting drops under my tongue, and within a half hour I was HEADACHE FREE!! It actually made it go away!! and now that I have been taking it now for a solid two weeks, I have NOT HAD ANY HEADACHES (knock on wood) . I realize that everyone is different, but I sincerely hope this works for others. Its worth a try!
J Dubel <jandkari1@netzero.com>
Flagstaff, AZ USA

I just posted my 1st comment, and I forgot another symptom I have. My left sinuses feel clogged every morning and much of the day, too. Thanks.
Kristin <kristin1961@yahoo.com>
Lumberton, NC USA

I have been experiencing left-sided headaches for 2 months now, ever since I experienced a bout with cellulitis on the inner corner of my left eyebrow, just over the top of my nose. There was extreme swelling and my left eye was completely closed for almost a week. I was given antibiotics and a cream to use, which pretty much cleared it up, but it did leave a lovely, small scar. Since that time, I have had headaches that don't seem to respond to any kind of meds. My primary doc sent me to an ENT, who ordered a CT scan, which showed no sinus blockages. So now he is passing me off to a neurologist, with whom I have my 1st appt. tomorrow. The ENT said, "Oh, you have migraines." I disagree, after reading up a lot on headaches. The symptoms I experience are in every way indicative of cluster headaches. My left eye is droopy and puffy every morning, my pupil is constricted, I have dried "drainage" from my eye on my skin in the mornings from excessive tearing, I suppose, and the pain is almost always in the exact same spot. Although my pain is quite unnerving at times and can be bad enough for me to want to hide away from the world, it has not gotten to the "head-banging" stage, thankfully. Do ALL CH sufferers have that kind of pain, or is there someone out there who has pain as I describe....sometimes dull, sometimes sharp, sometimes stronger than other times, but ALWAYS annoying and enough to alter my mood and what I am able/willing to accomplish during the day. Anyone out there have any insight for me? I appreciate it greatly.
Kristin <kristin1961@yahoo.com>
Lumberton, NC USA

I just want the pain to stop. Sometimes I want to die. I really, really do.
C.D.B <orangeclarity@yahoo.com>
Los Angeles, CA USA

hi cluster heads my name is cladi. ive been dealing with clusters for bout 6 yrs now. the first 2 i had no idea wat i was going thru. my wife dragged me to the hopital one night and thats wen i got the news that i have clusters.i get them bout evry june and they last bout a month or so i get 2-3 a day i take imatrex injections but after the first wk ur arms hurt so much from all the shots. trying to find something else that may help. the shots work really good but like i said 2-3 shots a day is tuff
cladi <cladi.rodriguez@yahoo.com>
holyoke, ma USA

been a clusterhead for 10 years, 2 doctors, no results... just entering my 4th cycle. first one in 3 years. tomorrow i try oxygen with very high hopes. new doctor seems determined to see me get relief...glad i found this site!
Eric Jacobsen <ebear@bmi.net>
Wenatchee, WA USA

Greetings to all CH sufferers! My last cluster was in 2008. I just had them re-emerge with a vengeance. After suffering for a week, both night and day, I went to my primary care physician. After the usual, "there's nothing I can do" routine, she prescribed the pain killer, Hydrocodone. I am happy to say this has relieved the pain. When I feel a CH come on, I take one and it has helped keep them away. They also have helped immensely at night so I can get some sleep which is a big part of the battle. I am not a pill popper but so far so good!
James <jmmerch@yahoo.com>
San Mateo, CA USA

I am so happy to find this site! After thinking this was a food allergy for over a year and cutting out all foods that may trigger these mystery headaches or living hell aches, they started again one year to the date later! I felt stupid, crazy and even considered this was "all in my head" so to speak. Thank you for sharing your pain with me. I may not know any of you, but feel as though we are connected. The only thing that has eased, not stopped my pain, was tons of ice water, hot showers, Asa 325 mg Tylenol 1 gm all done at the same time. I am now on my second night of trying melatonin. Thank you all for sharing this personal horror! It has helped me cope a little better!
Becky Allen <ballen8484@yahoo.com>
Brookhaven, Ms USA

So glad I'm not alone.....or crazy!
Becky Allen <ballen8484@yahoo.com>
Brookhaven, Ms USA

Greeting all Cluster heads. Its that time AGAIN for me. Just started 3 nights ago. I know the drill of the DEMON so well. The first night....you wake up with the PAIN.You know the dread of whats coming for 6-12 weeks I am anxious....now afraid of sleeping....it will come....the pain...ohhh the pain..... Now I fear all smells.......it is mostly sleep that triggers it in the beginning weeks, than its the smells. Mens colonge is my worst fear!It could be food cooking, perfune, deorant....imagine living in fear of smelling colonge... I hate this!!! So much. I can cry just thinking of the pain I will have over the next 2-3 months. I no longer do the drugs!!! It really fried my memory and my brain. I just do ice and imitrex as needed. I did try a nerve block!! Twice! 32 needles, Twice ! PAIN FREE FOR 2 YEARS. Worth it. When I read all the stories, I truely feel your pain!! Be strong! Being stong is easy to say while I sit here pain free right now! But I am feeling some shadows in my jaw....We all know what that means! They need to find the cure, make us pain free forever. Really depressed that its starting all over again. Will have to fight with insurance company for my imitrex. Walk around like a zombie....so tired and drained, so out of it... so stressed...for months! Please please be a shortened cycle please please
Karen Oakes
Bethpage, ny USA

I was diagnosed CH in 1999, I was 13 years old. I had attacks frequently throughout middle and high school. After graduating high school I went 4 years without an attack. Thought maybe I had "outgrown" them. Then had an attack in January 2009. Still optimistic maybe it was a fluke maybe that was the last one. Until yesterday....they come out of nowhere. I kicked my sweet boyfriend out of my apartment just so I could be alone. From what I have read of your all experiences we share the extreme pain, nausa, and what feel like a lifetime of tourchure. I dont know if I'm alone in this but when I get an attack I also develop a high fever, normally around 102. So with the pain come chills. My whole body shakes from not only the pain but the fever as well. I'm excited to find this website. Nice to know I'm not alone.
Jodi <thesingingjode@hotmail.com>
Albemarle, NC USA

Very interesting reading. I had CH for 25 yrs with only one break, but it was a good three years. Now they are back with a vengence. Two-four times daily.A nurologist tried a bunch of drugs for a whole years and none of them worked so he advised surgery four yrs ago. They did what he called a trygeminal rhizotmoty which was intended to damage the nerve to prevent CH. Well one year later the CH were gone but the left side of my face it still partially paralized. And three years later the CH's are back. Tylenol/Ibuprophen and an ice pack is how I fight it.
Bob <rdmiles@shaw.ca>
Edmonton, AB CA

Hi Clusterheads, my father was 2 years painfree, after 15 years episodic clusters. Now....since 2 days the beast is back. My father whining on the floor and we feel just powerless!! Just pray, pray, pray... greetings from argentine!
Leo <nixpacka@hotmail.com>
Buenos Aires, Argentine

Hi everyone, Not quite sure what to say really, apart from I'm another lucky person who's been blessed with one of these damned headaches, Isn't it great to be special!!! They started in Nov 2010 the first lot lasted 4 months and like clockwork came back in Nov 2011 but only for 3 months, but guess what they started again 2 weeks ago. I simply cannot believe that you can experience so much pain without something breaking or bursting and It really annoys me people saying "oh what are you like! it's only a headache" these things are not just a headache!!!! I've been to the doctors today and he pescribed sumatriptan, I took one 3 hours ago and I might as well have urinated on my TV for all the good it did. I've got the horrible feeling I'm only just beginning to go down the same road as some of you and after reading some of the things on here "oh crap" It makes me feel terrible, I'm a 38 year old man who's happy in his life, got a wonderful wife and is a confident outgoing person, but when these things start I'm reduced to a whimpering 8 year old who wants his mum.
G Thomas <ger1701g@aol.com>
Mold, Wales

Im 33 male, headaches started a year ago every morning on right side and lasts for 45min-2hrs sometimes they happen 2-3 times a day. This went on for about 3 weeks than went away for approx 6 months. First time thought it was sinus infection cause I recently had an ear infection. Doctor gave me double dose of antibiotics and a nasal spray. The headaches went away. Then they came back(about 6 months later) so went back to Doc asked for same treatment right away. Did not get same results, headaches were still there. At this point, Im looking into TMJ disorder because I also have jaw pain and ringing in my ear. The doctor gave me a sample of a drug called Axert(almotriptan malate tablets)for the pain, it seemed to work within 30 min but only tried it once so far. So far this is the only thing that has worked.
Jason <jthelam@gmail.com>
Innisfil, ON Canada

I'm a Professional sportsman and have suffered from CH for 30 years. Currently on my 7th week- thought they had finished last week as i only had one CH during the whole week , then Bam back worse than ever. I stayed with a friend of mine in Spain last week and woke as usual about an hour after going to sleep and with all the screaming and noise my friend came to see what on earth was happening - he told me in the morning that he could not get back to sleep as he had never seen anything like this before and it really upset him (thought it was similar to a migraine) till he was a witness to what we have to go through! Just wishing doctors could find a cure for this horrible problem we all suffer from. Mark (professional golfer)
mark mouland <markmouland@mac.com>
Kenilworth, UK

I just wanted to let everyone know out there who has an Andriod phone (haven't looked on iPhone) there is an app out there that's helping us greatly! It's called Manage My Pain (lite or regular is $3.99 - worth it!) You can custom assign categories, sub categories (i.e. Alleviating Factors: pill, water, walking, bashing, etc.) and check the boxes as they apply to your incident. We suffer from Chronic Clusters, so it's very helpful to name our frequent cycles. Also gives you charts, tables, graphs, pie charts to help your doctor work out a treatment plan (or help you argue with insurance for more pills!) Good luck, -Wife of a Clusterhead and Serial Empathizer
Jessica <jessica.rushfeldt@gmail.com>
Indianapolis, IN USA

I have been suffering with Cluster Headaches for 15 years; however I did not know they were Cluster Headaches until about 6 years ago. The Beast comes to visit me every two years and stays for about 6-8 weeks. I am currently in a cycle and have done a lot of research this time. I never knew that not lying down would/could ease the pain. The Beast wakes me up at night and when it does the pain is so intense and I am too sick to sit up. I have tried it recently but only succeeded in making myself sicker. I would not wish these terrible headaches on anyone. I am very fortunate that my headaches give me a long remission period and that I do not have the chronic type.
Stacey <stacey7425km@yahoo.com>
Carlisle, PA USA

I have had Cluster Migraines almost as long as i can remember now and when diagnosed at 20 years old(now 48).I think they started at about 11 or 12 years old,i would go thru all the symptems and always felt the pressure behind my right eye.This might help a few people but the pain seems to lighten up about 44 years of age(it did for me).I would have some times i wouldn't have the headaches for a year or so then come back. I still feel some pressure in my right temple but thankfully no pain or headaches for 4 years now(thank god).I just wanted to let all the people who suffer with this there is a end to it as it seems age and time does help so hold on. And family and friends these headaches are not caused by you and dont blame yourself this is something we live with and cant control! My headaches come and go no matter what time it is or whats happening around me,i could feel them coming 10 minutes before and untill i would vomit about 45 minutes later and then the pressure is gone and it would be like it never happened.It scares the people close to you to see this and not be able to help,but the best help is just support the person suffering from this uninmaginable pain. thanks for reading this and hold on it does get better. :)
MIchael Waybrant <michaeljsquirrel@comcast.net>
gladstone, or USA

I am just here to try and find a grasp of my new problem. After three days of extreme headaches i was taken to the emergencyroom last night where they told me i had cluster headache. I dont really know what to expect from now on and i feel a bit scared so this is why im here. To know what im up against and what to expect from now on. If anyone would like to help please send me an email. i feffeel a bit lost at the moment
Marie <ylva-frostfang@live.co.uk>
Huddersfield, UK

I seem to have outgrown episodes (seems to be a commonality). No recurrences in 10 years (I'm currently 59). But experienced in the wee hours an hour or two a night for a week or 2 in 3 or 4 times a year for 10+ years. It truly is "suicide headache". A 1" red-hot pipe driven into the back of your neck, over the ear and into your eye (right-side in my case) and then Satan hits the pipe with a hammer. It cost me 2 failed marriages. Hard to be a good groom in such circumstances. And my brides couldn't possibly understand. I pray you all out-grow it as I did. My treatment (other than not having a lethal weapon at hand)? A job of freeze dried Taster's Choice I would eat dry with a spoon. A vaso-constrictor? Make coffee. drink amply. Best to you all
Don <lowrydon42@gmail.com>
Honea Path, SC USA

Thank you for helping people channel and share. I had my first Cluster Headache in 1984 and have been chronic since. Back then, there wasn't internet. We CH suffers just did our time. For me, this was a 45 minute pain session 3-4 times a day. A good day means no night wake- ups. Night wake-ups mean 6 to 7 daily pain sessions, 45 60 minutes. When doing 7 sessions a day/night, I might have an out of body experience due to crossing some pain threshold which breaks the human psyche. On occasion, I could look down on myself from above and see my naked body lying in the cold wet bathtub. It s either a hallucination or actual. I would do my night sessions in the shower, quietly suffering so as not to wake my wife. The shower was a good place to do a pain session because no one would disturb. The shower head also offers continuous cold water and white noise. I would welcome the nausea and gagging when it came because it meant the pain session was over. During and after a session, the skin on one side of the face cannot be touched due to a severe bruising sensation - trauma that lasts for another 30 minutes after the peak. But this part of the pain cycle is child s play. I had a ritual of eating an orange after each individual nightly episode, 3-4 times a night at top of cluster cycle. In the morning I would count how many oranges I had eaten. Within 30 minutes of awakening, every morning, for about 10 years, I could feel the first day s session percolating deep in the muscle of the upper right trapezius. Once the pain moves up and past my right ear, I would do another session. I could say "we" would do another session. That is me and the demon, the anti, the mother F. Yes, I did verbal battle with the demon and crawled on the floor and whimpered when no one was around. On occasion, I even blasphemed our Creator, which I pray to be forgiven for. If people were around, I would be polite, so as not to freak them out too much. I had good bodyguards most of the time. These are the people who know me well, and inform others that, He is just having a headache; he'll be ok in a little while. No! No, don't call an ambulance and don't ask him if there is anything you can do to help, it will just take him longer to come out of the headache if you try to help." Anyway, at 22yrs old, doctors avoided me after one or two visits. Collectively, they tried everything except the pain killers. No way! No Way! Eventually, 10 years later, I'm ~ 32 years of age. I attract the interest of a neurology Cluster Headache Guru, Dr. x at x University. He medicates me with pain meds and a touch of verapamil sprinkled with depakote and instructs me to Not stop taking these meds until you shut it (the CH) down, and then keep it down. As the meds went to work, I was able to calmly observe the full CH event without physical pain. I remember hearing and feeling large arteries in my neck and head moving large volumes of plasma around with each heartbeat like the sound of an obstructed garden hose and with each pulsation, felt the friction of the plasma throbbing against my arteries. I observed horrific contortions and knotting of musculature throughout my shoulder and neck. Ten years later, at 42 years old, and due to medically supervised medicine, I have a degree in Molecular Biology from a prestigious university and I outperform my peers in a Fortune 100 company. I still have chronic cluster headaches. What stands out the most in the website posts is the amount of un-medicated suffering that is still prevalent out there. Also, Wiki, WebMD, Mayo....etc, does not reference pain meds as viable. In my case study, pain meds are the only benevolent method of control. That neurologist at the medical university saved my life. Tonight, I am exhibiting all the symptoms of a massive CH, but I feel no debilitating pain thanks to pain management. I wish I didn t have to take meds, but the alternative state of being is undoable. Senior CH
Anonymous
Monterey, CA USA

I am sooo sorry for all of you suffering these horrible torments. I thought my life wasn't worth living until a few days ago watching a video about lsd and heard about a condition that puts it's victims in the worst pain known to man and i just decided to research it and what I found on youtube, this site and others has really just broke my heart and showed me that life can truly be much much worse. I would just like to say that I love you all very very much and am praying for ALL of you. I am a Christian and if you are interested you can email me and i can give you my number so you can call me and I will pray with/for you in Jesus name that you be healed and delivered from this hellish torment. I wish I could just snatch that pain right out of all of your beautiful heads but I can't but I know the one that can. God Bless all of You!
chemia <chemia_cullins@yahoo.com>
atlanta, ga USA

Just online trying to keep my mind off the 3rd day of constant 'drilling' at the back of my right eyeball!! Sometimes feel I could pull my eye out rather than live with another day of this. Chronic CH for 6 years Aged 42 Female Fedup with pain relief not relieving and making me constipated!! LOL
Linney <belsherlock@btinternet.com>
London, UK

When I got my first headache about 2 years ago I thought I was having a stroke or something. It scared the living crap out of me. I went to my doctor had MRI's you name it I had the tests done. The word cluster headache was even known in my vocabulary! I then saw a neurologist and was told That I probably have cluster headaches and that there isn't a cure. What really sucks is when my daughter that adores me sees me curled up in a fetal position banging my head and acting like a lunatic. She and my wife are both helpless and it hurts me to see them so worried about me. It is refreshing in a way to know that I am not alone and trust me If I could be the only sufferer I would be. I know it hurts so bad and would want to wish it on anyone. Thanks for the site and giving me a place to vent for a bit. I have been needing this.
jerry <jks@austin.rr.com>
lago vista, tx USA

Thanks a lot for this site with all the information about that terrifying pain! I'm glad that this site tells me everything I need to know about my new disease.. I am 20 years old and the clusters started 5 days ago for the first time.. After all the information it seems like I have chronical cluster headaches.. I am just waiting for the next attack =/ The information is so helpful! All my love to the inventor of this site, it's good to know I am not alone <3
Justin <Leon.Reiffersch@web.de>
Bad Breisig, RLP Germany

Won't make this long. I am having difficulty setting up an account on this website. I ordered the Optimask for my husband ... And received it extremely fast! We are having difficulty in making it work and when I try an access the instructions for using it it ask you to log in??? When I try to set up an account and get to the area where it says enter verication code.... There is not one there. Can anyone help me? Thanks so much, Nancy Velletta
Nancy <Nvelletta@cox.net>
Yukon, OK USA

I am a 49 year old male who has suffered from Cluster HAs since I was 13. It's been three years, longest remission period yet, but now they are back. The O2 is working for now, and I have been taking a new preventative med since last bout,Topamax (Topiramate). It is an anti-seizure med that is also used for migraine prevention but not pain symptoms. The onset of this bout has been non-typical, being slow and low intensity. One can only hope that this trend continues! I write hoping that this med may be helpful to others, and to express my thanks and comfort in knowing you all are out there and willing to help.
Thomas <trosenbloom@q.com>
Webster City, IA USA

I am the husband of Kathy who is suffering we believe of cluster headaches, would love to speak with someone in Chicago..I am firm beliver of support groups, cancer survivor...
murray rosenblatt <muzzyrose@aol.com>
CHICAGO, illinois USA

I suffer from episodic cluster headaches.
Frederic Pinsonnault <fred_pinsonnault@hotmail.com>
L'Assomption, QC Canada

Feeling at home here having suffered on and off from CH these last 13yrs. I am 63 and I am coming out of my 4th period since 1999. Reading many of the comments here I have to say I feel somewhat lucky that my clusters are pretty infrequent in years albeit when they do hit are "terrible". Prior to this current bout my last attack of importance was in 2004 I now know the meaning of suicide headaches !!! Keep the faith all of you for what it's worth with you all in spirit. xx
Antoine <filouboy@gmail.com>
Brighton, UK

I know what you are dealing with! I'm 52 and have danced with the devil since I was 12. Soooo, since you are like me no details on our horror need be shared. It is, what it is. But here are some things I have figured out that may be of hope or a bit of help for you. My demon has lessened over the years so as you get older they may get fewer. Mine went from all the time to 2-3 years apart. Now when I start a cycle I jump on the imitrex IMMEDIATELY for EVERY attack! And build up a stock of it when you are not in a cycle. Insurance only allows so much a month and when you eat one for every attack you go through them quickly. My goal in this is to try and stop them from building to full strength which lessens the overall number, strength of attacks and cycle duration. I also get on a prednisone tapper ASAP. And don t drink alcohol! I am a home brewer and it is just that much more for me when I am not in a cycle. Lastly, when I do have an attack, if at home, I take a shower and let water as HOT as I can tolerate run over my forehead, eye, and alternately over the back of my neck. The max pain I have had thus far is about a 6. Hey! From repeated 10s to the tickle of a 5 or 6 I'll take any day. This isn't your fault. It isn't the fault of those around you so love them that much more for letting us deal with our devil. I know my wife of 34 years has. It is what it is. The only solace I can offer is that I and others know firsthand what you are dealing with. But I still wouldn't trade my life for nothing. Hasta la Llego. Rio Rancho, New Mexico.
Richard <Richard.Netzer@kirtland.af.mil>
Rio Rancho , NM USA

suffered for three years now
patches roland <patchesroland@yahoo.com>
onalaska, Texas USA

I have eposodic clusters they seem to come every four yrs & create a unbelievable amount of pain & dehilbilitation to my life for anywhere from 60 days to six months & then disappear as fast as they arrive. Predizone is mainly the drug but I've come to find out the each & every bout daily or follow occurance is so much more excuricating than the one prior... Even the ER cant elivate any longer they knock me out drug & send me half wobbly out the door.
Craig <craigsescape@msn.com>
colo sprgs, CO USA

Suffered from Cluster headaches for 7 years. Tried everything for pain, and nothing worked. Except!!!!!!One day I felt a headache coming, Started looking for something to take, only thing I could find was Lunsta.I took it and I never got a headache, and every single other time it worked. I have been 3 years without. Hope this helps someone. TED
Ted <Batman@widomaker.com>
Williamsburg, Va USA

I firmly believe that my cluster headaches disappeared after I quit smoking which was 18 years ago.
Frank T <mrfrankt11@gmail.com>
USA

Hello everyone. I'm 62 and been managing these monsters for quite some time now. As I was in the discovery mode trying to find out what was happening the doctor sent me in for an MRI. Good thing because I was found to have an unrelated problem called inverted papilloma. They had to open my forehead to remove it. Here is a link to my you tube http://www.youtube.com/watch?v=ox4cqIQX-Ig The doctor also removed the portion of the brain that allows me to smell and taste. So, then I couldn't smell or taste and these monsters were still invading. I came so close to suicide it was so scary. Finally, I saw a neurologist who prescribed an antidepressant called Nortriptyline. I was told to take it everyday and increase my dosage until the monsters went away. IT WORKED! Since then I have learned my "seasons". I am able to get off the Nortriptyline while not having the headaches and then get back on before they get going. I hope all of you are able to find some way to get control.
Rich Rossavik <rossavikoj@hotmail.com>
Portland, OR USA

Hi All, I Love this site so much :) So good not to feel alone anymore :) xox
Blaise <blaise.singleton@hotmail.com>
Cairns, QLD Australia

Hi Thanks for this site. I so could have done with something years ago like this but at least it's here now. Keep up the good work
Ken Sweeney <kennt1972@o2.pl>
Dublin, Ireland

Hello, I'm new to this site. I was finally diagnosed with cluster headaches last December, after two frustrating years when everyone thought I had lost my mind. I had x-rays, mri's....at first I thought it was an infected tooth, as the pain would ALWAYS start in the right temple, then go to my right ear, and then my tooth. The best way I could describe it was like a knife being driven into my head and eye. I finally went to a Ear, Nose Throat specialist where they said it was "probably" cluster headaches. I looked it up on the web, and it described me perfectly. I was prescribed Babapentin, but have been hesitant to take it, as it's usually for epileptic seizures. But lately, they have been coming twice a night. I finally get over the first one, lay down to go to sleep, and within another hour, another one. The 2nd one is the hardest to handle, cuz I'm thinking "are you freaking serious??? Not again!!!" Anyway, it's nice to know I'm not crazy. The odd thing is, I'm a woman...55 years old, and I've heard this is most common in men. I'm going to try the Gabapentin tonight, cuz it's been 2 solid weeks of this, and I'm exhausted. Thanks for listening!
colleen <cduffy@ncelec.com>
portland, or USA

Hi, I'm new to this site but have been suffering from Clusters starting around my 7th year in the U.S. Navy. So really they have been destroying my active life since the age of 25 but have been misdiagnosed by military doctors until recently. I am 27 now and finally got tired of this "monster" affecting not only my life but my family's life. My Clusters cycles have really been confusing because I see a lot of people who suffer from this say they go periods without them. I wish, because the longest I've gone is maybe a few days, but that's it. I know there may be a lot of other people that feel like I do. I am SOOOoo tired of fighting. I am tired of fighting doctors, 1 of which just told me yesterday, " fighting clusters are like shooting darts, we just have to keep shooting until we find meds that work". I was a pretty normal guy until my clusters invaded my life. But enough with the complaining, I'm sure this site hears a lot of that. I hope the medical field comes up with a cure or a more efficient way of dealing with this "MONSTER". The neurologist gave me melatonin, verapamil, and predniSONE yesterday to see if this DART will help. Pray for me as I will do the same for the many post from fellow Cluster Suffers.
Omar Rashad Hameen <Omar.hameen@yahoo.com>
Augusta, Ga USA

Suffered close to 20 years. Now it is gone for a long period of time. But remembering those days, just want to share with you my perosal "revelations". This was useful in my case - I found that a piece of solid metal brings relief if I keep it on my temple part of head. In my case, I was rolling mouse track ball all over my temple area (if you can find one now-days).
Armen <spamreactor@gmail.com>
Yerevan, Armenia

I share all your symptoms so I will not repeat it. I did however discovered something that helped me and would like to share it with you. The tablets are available is South Africa so I will supply the contents info as well: "Brexecam": - Contains 191,2 mg piroxicam beta-cyclodextrin equivalent to 20mg piroxicam and Lactose 102,8 mg. Dosage: One tablet after dinner. Since I am using this I had no pain during the night. "Migril" -Contains Ergotamine tartrate 2 mg; Cyclizine hydrochloride 50 mg; Caffeine hydrate 100 mg. I had three tablets the last 2 days and had no pain during this period. I really do hope you can find something and that this info can help someone. Gods best wishes to you all. Archie
Archie <jajooste@absamail.co.za>
Pretoria, Gauteng RSA

Hi, I'm not actually a Newbie but it's been several years since I've visited. I've had clusters since I was 55. I'm now 82. Don't let that discourage you as my cycles are fewer and the headaches are not as severe. I think this cluster was triggered on the last Sunday in February when I went jogging/walking on a cold-very windy day. On the previous day, I had used a strong detergent, trying to clean bathroom tile. I did not feel the HA until Sunday. It felt like a regular HA for a couple of days but then evolved into the "Cluster" type that you all know about. I've only used prescription medicine ONCE in all the 27 years that I've had them. That was last year when I made a deal with a Neurologist that when I started a cluster, his office would give me a prescription for a one week series of something (I can't remember what it is), and I would schedule an appointment (which takes 6 weeks). You all know the drill, I think. When you go into a cycle, you need help. But if you have to wait 6 weeks to see a Doctor, it's often a waste because your cycle may be over. Anyway, this year, it hasn't worked so well. When I went for the prescription, I got the runaround. I still don't have the prescription so I've decided that I'm going to cancel out with this guy and go back to square 1. That's the old man's story for now. oldred82
oldred82 <Raymondd938@gmail.com>
Dover, NH USA

for many years I've been suffering from hadaches all the way back to childhood for years doctors said its just headaches take tylenol motrin etc. it took me blacking out and flling down a flight of stairs to have them test me and say ok you suffer from migranes,try this imitrex this should help it did not. and then a few years ago i noticed my headaches were very different with the migraines and had some warning signs but this new type much different woke me up only to one side face felt weird on one side runny nose and odd pain in one side of mouth eye did odd things on the one side felt flushed and the pain far worse then other times i would scream rock back and forth side to side hot ming piercing pain. when i mentioned this to my dr he would say you do suffer migraines right and then left it at that. treated me like i was a drug hound to which im not i have a great fear of drugs as I was once a drug addict and fear of ever falling back into that nightmare. some drs try to blame my weight my son came to me a few weeks ago after learning something in school handed me a bunch of printed pages talking about CLUSTER headaches and told me dad i think you suffer from these as well..so i looked them over went to some of the sites they called it the suicide headache yes that made sense to me because with the migraines they hurt like hell of course but I never thought seriously about running into traffic or opening an artery over them but thses new headaches oh yes i has thought about that alot.and these sites like webmd said that people who suffer from clusters can also suffer from migraines as well and i do so I never get a break if I get 1 week no headaches im in heaven,but thats rarely the case.im at my wits end my pain threshold is near complete.he only thing thats preventing me from ending pain completely is i dont want my son or wife to find my dead body but i dont know how long i can keep that from becoming a reality. thank you for listening
paul <pmscotland34@aol.com>
niagara falls , ny USA

Before I say anything, I have to say thank you for creating a forum for those of us battling this demon. I'm 27 and I've had clusters for almost four years now. I've been very, very alone in this. I've been told my pain is psychosomatic, just for attention, demon possession and most recently just a part of depression after losing my father to cancer. I went to an emergency room once and since my behavior was erratic, I was subjected to every drug screening and physical checkup in the book. I didn't know if after they were finished I was going to get a diagnosis or a stint on death row. I've had moments where I think I'd find relief if I put my head through a mirror, wall or anything that would allow me to focus on some other pain...any other pain. However, saying things like that make people think I'm interested in taking my life. In reality I just want to be able to live my life. I've had this current cluster for 5 days now and I'm really losing my mind. I feel like a burden to those around me. As I type my body is shaking, tears are falling, I can't really focus and my speech is even off. I'm at a loss.
Sarah <SBdaQT04@aol.com>
Sarasota, FLORIDA USA

Reeling in pain , banging my head off the bed, unable to walk, wishing i was dead! the doctor is useless he thinks im having a laugh.... i bet the twat cant even run his own bath! no one knows the pain we go through no one apart from me or u ! nasal spray is what works for me i go to the doc and beg for thee if he says no i refuse to leave i stamp my feet and cause a scene ! after a month they are gone, and knowing that is why we carry on!
ben fure <benfure1230@hotmail.co.uk>
kingston upon thames, uk

2 nd bout with these demons. 1 st was 3 yrs ago. Now they are back and have been 2 to 3 a day for the last two weeks. Just starting to hit the end of these.
Jeff berry
Trussville, Al USA

I have had my most recent attacks start about 2 weeks ago. After reading the forums, I have been drinking A LOT of ice cold water. Last night, my usual attack started as it always has this cycle, around 12:30 am or so. After squirming, pacing, moaning, etc, i went downstairs and drank 4-5 big gulps of ice cold water. I paced a few more times and made myself drink another round of water filled with ice. Paced more, repeat. To my astonishment, the attack was aborted within about 10-15 minutes which was a miracle unto itslef!!! I was SOOO relieved and was able to actually get over 5 hours of interrupted sleep AND i didn't wake to another attack as I have been prolonged to the morning before. I hope this helps at least ONE PERSON with their fight with the devil. Thank you to all who posts because it makes me feel that I am not alone in my agony. I also recently read that drinking Red Bull helps with counteracting cluster headaches if you can drink it in the very early stages of the attack, and have tried it this time around as well (it has helped stop a few that have tried to invade my sanity). Many blessings to all out there and I wish relief to everyone that has to endure 1 minute of this torture. Stay positive and take care of yourself.
Patrick <positivepatrick@hotmail.com>
Huntington Beach, CA USA

Being 38 yrs old, I am a 15 year veteran of battling CHs. I've had one year breaks, a 2 year break, then the last one - a 3 year break until 2 weeks ago. In the past 2 weeks, the demon has returned with all new tricks and pain characteristics adding some severe burning to the already unbearable "drilling" feeling, and I've found myself talking like a stroke victim with slow speech and some slurred words after these recent attacks. Currently working through the channels of the med world to get to a neurologist in hopes of discovering anything that will prove helpful to stopping this once and for all. One more thing....I am a Christian, and have strong faith. I hear God telling me to stand as strong as I can, that I will help others with this one day. Hope so....and I'm praying for all of you.
JayC <ljayc_@hotmail.com>
Weatherford, TX USA

I've been getting CH for 25yrs its had been 16 month since the last bout,they returned to weeks ago and all i can say is thank god for my imitrex and the emergany doctor that asked me if he could try it instead of the demeral shot about 9yrs ago. But until i found this site i had now idea that i could cut my dose into thirds thank you. i have ended up in the emergancy room since.
Paul Arsenault <Asrenaultcool@gmail.com>
Orillia, ont Canada

I started doing research on cluster headaches when my doctor told me that i might have them. I am currently waiting to see a neurologist, so i am not certain that i have them. I can relate to most of the symptoms, but i do not experience any headaches @ nite, & alcohol does not trigger a headache for me. The severity & patterns during the day are constant. I have only started getting these insane headaches for about 2 weeks now. I have read the website from top to bottom & am grateful for the information. Thank you....
mike <mikecurf@yahoo.com>
chicago, il USA

Hello Everyone, I have not had a culster attack for many years.Save for a few shadows here and there.. Thanks god for this because I was starting to loose it. Melatonin help me.I decided to log on and see if there was anyone needing help.Hang in..I know what you suffer
David P Shea <captdpshea@yahoo.com>
Abbeville, La USA

hi everyone, i have not been on this site since 2006, when i had my last bout with the devil. When i felt the cluster come back last week i decided to see a different doctor (in 2006 oxygen worked somewhat ok) but not as well as what i am currently using...there is no pain (that i have ever known//i am almost 50) as these headaches. As many of you are probably like i am and dont believe there is some magical cure and although there isnt a cure for the cluster i have finally found releif from the headaches...ask your doctor for a "SUMAVEL DosePro".. it is a single injection that you can give yourself and it is amazing..for me while i have the cluster i always feel the pain in my eye as like a level 3 but when it moves to a 5 i give myself the shot and before it hits a 6 it is gone! Try it for your self...now i still feel worn out after i did not have to deal with the headaches full force because of the injection...research this at www.zogenix.com....this is not an add...i am a cluster sufferer and want to help anyone i can...email me if you would like more of my take on this product...and best of luck to all of you!....roger!
roger wortman <rowrtman@brightonford.com>
howell, mi USA

So glad I found this site. I was diagnosed with CH yesterday after being treated for sinus headaches for 2 years. My neurologist wants me to take steroids to break the cycle - strangely enough, I slept for the past 2 nights and had only minor headaches during the day so I may be at the end of the cycle anyway. It has been 6 weeks of 3 - 4 bouts every night, I am exhausted. I just want to feel normal again. Any suggestions on how to speed up recovery and regain some strength?
Helga Yablonsky <helga.yablonsky@gmail.com>
Ormond Beach, FL USA

Hey fellow Clusterheads! What a fantastic site this is. Thank you everyone! I m a Norwegian woman of eh mature age and I ve been suffering from CH since my late teens. In a way I ve been blessed because the attacks are few and far between. I ve been in remission for several years until last Monday. After a few horrible days I got meds that really seem to keep the daemon under control. Shots with sumitriptan and then verapramil have worked wonders! These lines came to me, and it s nice to share it with people that really understand: Mr Horton. Mr. Horton knocked on my door today. -Oh no! You re not welcome, please go away! -After all this time, is that all you have to say? No Honey, he said. - I m here to stay. I enjoy our rides and you have to pay. He laughed out loud. Come on, let s play! I sighted and knew my prayer was in vain. With his tools of trade he will try to drive me insane. He s good at his job, that I know all too well, And with all my heart, I wish him to hell. This time you see, I have some tools of my own, I will beat him; -Just you wait and see, you evil, old clown!
Synnøve <nogreekgoddess@hotmail.com>
Arendal, Norway

I was 39 when I had my first cluster headache and I had no idea what was happening. Thank god for this website and other places of valid info that let me know what was going on. I do not like prescription meds and they didnt seem to work for me anyway so I had to learn a new way to try to address cluster headaches. Please try this as a help, it works best if you take this combination when you first feel the "shadow" is what I call it, CH sufferers know what I mean. 1 fish oil capsule, 1 3mg melatonin, 2 regular tylenol 2 extra strong cups of coffee. It took me two years to get this combination down to a science but I have not had an attack since I started using it, although sometimes I do have to take an extra melatonin if the "shadow" worsens within half an hour. Please try this. And if there are any researchers out there, please do a study with this combo, it has worked for me 100% of the time and fully prevented attacks for a solid year.
Marsha Rice <m_hylton@yahoo.com>
KY USA

Looks like its time for me too dance again too. Have not had one since last April, but started a new cycle on Feb 1st, just like last year. Almost like clockwork. That is so weird to me, how its like the Devil was just watching his calendar and waiting. I just hope my doubleing up on my blood pressure meds ( verapamil) is as effective as it was last year. So far my headaches have not been to severe the last 3 nights, but I just had a 45 minute nap ( my usual start time ) and have got a pretty intense one going right now. Wanted to make sure I am "IN" a cycle. Wow! I am pretty sure now that I am. So I will start doubling up on the meds today. One thing IS for sure, Its Nice To Know My Fellow Cluster Heads Are Still Right Here For Me!
Dave Landsmann <dlandsmann@hotmail.com>
Bradley, IL USA

Great resource. Good to know we're not alone.
Alan Keane <alanvkeane@gmail.com>
Dublin, Ireland

I have suffered for a decade. NO MORE!!! LSD is my cure. NO BULLSHIT!!! google silkroad for medicine!!! I have experienced absolute relief from my pain.
Brian <brian_semail@yahoo.com>
Clarion, PA USA

I have been suffering from cluster for over twenty years, every second year, I try and take 50mm of sumitriptan just as the aura starts and sometimes I can shut it down almost immrdiately, if I am too late I go through an attack for 30 - 40 minutes. What helps is an ice cold compress from the freezer wrapped with a wet cloth.
David Goldsmith <dgfilminsurance@gmail.com>
Toronto, ont canada

My husband suffers from ch every night. We are so used to him having them now that I tell the kids "keep it down please daddy has a "headache" The sad thing is they know what Im talking about and they keep the noise level down..But its not the noise really that bothers him its the light any bright light. He usually goes into a dark room and emerges 45 minutes to an hour later..Sometimes they hit him at 11ish at night about an hour after he goes to bed. He has tried everything as well and he says he will not let the headaches get him down, someday there will be a cure for them. He is a very strong man and fights through them everynight...I wanted to know what he was going through exactly and one night i found out..I woke from getting over a migraine and this pain on the side of my head was horrendous I knew this wasnt a migraine, two hours straight it hurt and I wanted to break the side of my head off..It finally went away never to return..I think I know but all I know is I want to say God bless all of you who have to deal with ch and I wish for a cure for all of you..
Rod and Kathy youker <youkerrod@yahoo.com>
little falls, ny USA

Upon stumbling on this page I found myself reading peoples testimonials of how their headaches feel, sobbing, because for the first time, I feel that other people understand what I am going through. I've been to numerous doctors with little to no results; I've been prescribed multiple medicines with no help; and I am truly at my wits end. I had one doctor suggest cluster headaches but ruled them out without so much as testing me for them because "they're so uncommon, it's probably not that". My symptoms are almost an exact match (searing pain behind my right eye that radiates down through my neck and shoulder, headaches come on quickly with no warning and will subside/resume within an hour or two for several days, headaches are so debilitating that I have to call out of work because I can't function, tearing up in my eye because of the pressure, light and sound don't really have much of an affect, over the counter medicines don't do anything aside from give me a stomachache, etc.). Finding someone that has even a remote idea of what I'm going through means so much to me right now, because trying to explain this feeling to my boyfriend, employer, doctor, is nearly impossible. Everyone attributes it to "it's just a migraine" and makes the generalization that I'm just being a crybaby, or that I'm trying to get drugs (which I don't even WANT, I just want an answer for the headaches - not to mask them with an addictive drug). Thank you so much for creating this site. Knowing that I'm not alone, and that I'm not crazy, gives me the strength and hope to keep fighting against this and to find a relief.
Jena <jena.eichenlaub@yahoo.com>
Boca Raton, FL USA

My boyfriend's doctor believes he has cluster headaches. It is perhaps the scariest and most accurate diagnosis we have ever gotten. Reading the messages on this website has touched and scared me. Thank you for this website.
Fadzai Madzingira <fmbutterfly66@gmail.com>
Pretoria, South Africa

hard to believe,after stopping (so I thought) at age 51 the "clusters have reappeared at age 73..although slight compared to the past,the symptons are the same but now on the left as opposed to the right...if it continues and/or gets worse it will be back to oxygen...only real remedy!
Paul Sheppard <pshep489@aol.com>
Potomac, MD USA

First of all, I would like to say thanks for someone having the gumption to put a site like this together. Hopefully sharing some of my experiences may help just one other person and that would be well worth it. I've been suffering cluster Headaches since 1979 and as you may guess, have suffered many boughts of severe debilitating pain. Over the years though, I've taken a more proactive approach to controlling my boughts with clusters. It's gotten so bad at times that I've made trips to the hospital emergency room for a shot of Demeral. I suffer these headaches about every 12 to 16 months. My last bought was on August 10, 2010, and just started a new round of clusters on December 28. They only last 2-3 weeks so I should be fortunate for that. I start out having 6-8 headaches a night and they only beging about 30 minutes after I first go to sleep. Over the past few years, I've been thru a few medication regimens and the one I'm using now seems to be working pretty well for me so I'll bring you up to speed on that from what I started with to what I'm using now to control the cluster headaches. I have been using a private neurologist but am now working with a neurologist with the VA. I first started out at the onset of a headache, taking a 2 mg tablet Clonzepam along with a tablet of A drug called Amerge. Don't remember the MG on that one. That seemed to work OK for awhile. Then the doctor wanted to tr 25 MG tablets of Sumatriptan Sucinate Tablets which I personally found to be worthless. I've also taken 10MG tablets of maxalt along with the 2MG tablets of Clonazepam with good results too. My combination of drugs of choice at the moment is along with the 2mg Tablet of Clonazepam is a 2.5MG tablet of Zomig or (Zolmitriptan). This has worked wonderfully for me and ususally results of the complete removal of my headache within about 15 minutes. Last night, I only had one headache, which is a miracle but also because this is my 3rd week of cluster headaches so they should just be going away any moment now. I hope this same combination I've been using can be of help to someone else. I can definitely relate to the pain and other conditions of these cluster headaches. Many blessings to you all.
Dave <ddbru@yahoo.com>
Tacoma, WA USA

Imitrex is what you need for the ones that have insurance. My husband has been suffering since he's 16 yrs old. He seen numerous doctors/neurologist and Imitrex was the only medication that worked...
Danie LeBlanc <danie.leblanc@hotmail.com>
Eel River Crossing, nb Canada

I was first diagnosed with cluster headaches about 27 years ago before even most doctors were sufficiently aware of them to identify them by name. Over the years my treatment for pain has become more sophisticated and these days I manage to cope with Sumatriptan injections. Last week - after a record 26 months without a cluster (perhaps because I am getting older, I am now 73) - a new cluster started, although more moderate in its pain than in the past. I just happen to be a patient guinea pig in a research project into COPD at my local teaching hospital. For my breathlessness, I was prescribed a six-day course of steroids, 30 mg a day of Prednisolone, to help with my lung inflammation. From the very first night, my headaches ceased. It may not last, of course, it has now been only three days, but for me it was at least a temporary miracle. We victims need all the help we can get and I hope that this maybe inspires others to pursue a similar course.
John Holme <john.holme@yahoo.co.uk>
London, UK

I think I have these cluster headaches.....i'm not sure....they seem the same and yet some distinct differences. I've had them since I was 9 or so.....20 some odd years. gone to emerge.....10 years ago I got the diagnosis of tension headache but i'm starting to doubt it. i get them every two years. almost like clock work. 2 weeks of hell, then another 2 weeks of less hell. its worse then natural child birth and i've had 3 kids. they are every other night, for 12 hours or so. not the small bouts. NO drugs work.....naproxen, perks, muscle relaxants, alcohol....nothing. ice sometimes reduces the pain but i think it's more that i can focus on the ice rather then the thumping. i can't sit still, i scream, i cry, i beg. i bang my head.....it's always on the left side, up the back of my neck, around the front to the bottom of my ear, behind my ear to the temple, to my eye, and into my jaw. i also always throw up once, at the very start....i don't think its based on the headache, more based on the pain. again they are so very similar but the length is different. i've never looked at my eye....but now that it's mentioned it feels like it's drooping....but i may just be looking for similarities. The other difference is they start before i sleep.....about 9pm. but they go from zero to "i'm going to kill myself" in 5 min flat. I just need some relief here......i'm at the end of my two weeks here and i'm sitting here crying from the pain.....
sonja <isee77@hotmail.com>
kenora, ontario

I've been having this fun since High School in the 70's. I used to go running back then at full speed until the headache stopped but all that did was increase the occurrence. In the early days I was prescribed Benadryl, propranolol, lithium and a few dozen others that hadn't worked. My wife knew when she saw the trapped animal look it was time to lock herself with my son in the bedroom. Late night jump roping saved me from bashing my head against the wall. On a trip to the emergency room during a bad one a nurse asked some questions then gave me a cup of black coffee. By the time I saw the ER Doc the headache was gone so I got to hear the wasting valuable ER time scolding. Along with black coffee I discovered chewing Excedrin and downing diet Coke. I'll take any relief no matter how small. Somewhere along the line I was put on Sansert (methysergide maleate) that stopped bouts after either one dose (2mg) or two weeks of three times a day. My last prescription of methysergide was 2006. It had been so long I thought I was free and clear. A week back I started taking my old prescription and called my doctor. Cluster headaches are new to this doctor and he wanted to "try" Verapamil. I switched over two days ago. I ve had two headaches each for the last two nights that wake me up from a deep sleep, have had one headache that stopped me in my tracks at work for thirty five minutes and have otherwise been constantly feeling like one is coming on. It s a hell of a way to spend this New Year s weekend trying out new meds when I know of one that works. I ll need to do my best to hide how I m feeling from those around me so I don t make my problem theirs.
Seth Kemp <sethkemp@pacbell.net>
San Pablo, CA USA

About 40 yrs ago I was daignosed with Cluster headaches.Suffered 35yrs and lots of dr. run-around answers.I finally met Dr. Toth at Group Health and he said " lets try Bupropion and Nifedipine",I said I'll try anything.Took about 2 weeks for levels to build up in my system and havent had one since, thats was 5yrs ago. I dont have to tell you folks that life is good!!!! I take them daily, never miss!!! I hope this info helps somebody out there!!!!!!! That pain sucks and I have never forgot. Good luck to all.......... Rick Northon
Rick Northon <rnorthon@centurylink.net>
Poulsbo, Wa. USA

I was completely amazed when I found this site. I was sure I had sinus issues and or allergies but now I know they are CH. I've had them for several years but it seems that since I turned 50 they became worse. I know exactly how people feel when they talk about stabbing pain in the eye. Mine are totally one sided (right side) and yes I wanted to squeeze my head in a vise grip or something but I have found something that works pretty darn good. St John's Wart. It doesn't stop the attact but does lessen the severity of them and the duration. Since I started taking St John's my attacks aren't as severe. I still get them I just am not awake for 2 - 3 hours with the pain. I can usually get rid of the pain in 30 minutes or less. I too thought I was going crazy because I couldn't understand why I was waking up in the middle of the night with an excuriating headache that felt as though someone was stabbing me right in the eye. My husband actually discovered that St John's Wart might help and I was anxious to try it and it does help. I do take a rather large dose when I wake up with one but I can go back to bed within a few minutes versus hours. I was very happy to find others with this same problem. I take no medications very much against pharmaceutical drugs but do know there are times they are necessary. I also have a acquaintance thathas suffered from CH and has taken the pharmaceutical medications and recently had a stroke and she was only 48 years old. I'm sold on St Johns I haven't taken anything else that works as well. Hope it helps others. I've read Winter Soltice is a time of year that many are prone to CH, I've had a couple a few nights ago but slept great last night, pain free all night long! Glad I'm not alone in my suffering. Thanks to this site I now know there are "Others" out there.
Alma <alma.simons@experian.com>
Lincoln, NE USA

Good Day My name is Kenny and I am from South Africa. I suffered for the last 16 years from cluster headaches and yes nothing worked, I use to get my attacks from November to February every year, sometimes 5 times a day lasting for about 30 45 minutes. One day I just went to a new GP in my town, I just started explaining my symptoms to the GP when he said yes you suffer from Cluster headaches and that he can help me, So please go to your GP and ask him to prescribe you the following but you must start with the medication 1 month before your attacks begins. I am going into my second year without any attacks, yes I can feel all the symptoms of the cluster headaches but without the pain. Take 1 Sibelium 10mg and 1 Verahexal every morning and do NOT skip. You must take both these tablets. I hope this will help someone as it helped me. Best Regards Kenny
Kenny <kenneth.withfield@treasury.gov.za>
Cullinan, G South Africa

I am a newby but I have been having these headaches for about 5 years now.Been to a few Drs. that treated me for sinus inf. and alreagys.NO HELP! Done a lot of research on my own through the internet and found people just like me.Thank God,I am not crazy.I have been pain free for the last 2 months. I had forgot what it felt like to hurt so bad.Then all of a sudden tonight it started again.Oh NO!Please don't come back.Thats all I could keep saying.Please,please.It hurts so so bad.
Linda <lindaglaze58@yahoo.com>
Kopperl, Texas USA

Been suffering for thirtysix years. I visit this site whenever I'm in a cycle. It helps to know that I'm not the only one who lives with this demon. The site also helps to explain how you feel to those around you who want to be sympathetic. Hang in there everyone. One day we'll wake up and they will never come back. At least that's what they told me many years ago. Still waiting for that day.
Pete Celestino <jpcel@hotmail.com>
Palm Coast , FL USA

i am a 35 year old male who has been getting these headaches for about 2 years now.about 3 years ago for some strange reason i passed out and hit my head really hard and split my head wide open.so i thought i was experiencing these headaches from head trauma.but each year now it has gotten extremely worse.at first they were mild and was maintainable.now im sad to say i am a chronic sufferer.i can tell when my attack is coming because my nose starts to get stuffed up.then it goes behind my eye to the back of my head.since i am a chronic sufferer i cant tell u when im going to get them because i usually get them 1 or 2 times a day and they normally last for about 30 minutes depends if i can do my remedy in time before it gets to peak.now i hope nobody takes this offensive because i am goin to share wit you how i usually get rid of them without medications because i cant afford meds.when i feel an attack coming if im at home i race to the shower and let the hot water run over my shoulders and back of my neck while i am masturbating.i also take deep breaths while i am masturbating because it takes my mind away fom the demon.i stay in the shower for about 3-4 mins and once im done i lay upright and continue to take deep breaths and 95% of the time i fall asleep without even knowing.i still wake up feeling beaten up but the worse of the pain is normally gone.if i still feel extreme pain after the shower then i will take excedrin migraine.trust me it works.i hope this works for u.
suicidal <cameronballard75@yahoo.com>
moreno valley, ca USA

I am blind in my right eye, happened 8 years ago and the drs never figured out why. The headaches started a few years ago but not as long as I've been blind in that eye. But I have always assumed that the stabbing horrible pain I had behind my eye was a side effect of the blindness, somehow. I've been reading more and more about cluster headaches and I'm convinced that's what it is. I feel like someone is stabbing me in the eye. It has made me nauseous before (not often) and I have had to cancel activities because of how horrible I felt. Sometimes I have wished I had a vice that I could put on my temples to put pressure on them because sometimes pressure helps a little. Sometimes I have to push on my eye and that temporarily relieves some of the pain. I have no idea where to go from here, whether to see my doctor or not because I have no idea if they can even help me. But I am convinced now that I have read more about them.
Sarah
MN USA

I think my brother is having CH. He has been in and out of ERs, neuro units and doctors' offices. We are all feeling discouraged. He is in so much debilitating pain; he has talked of suicide. Now if we can only get the help needed to get the right treatments.
Lisa <terper5@yahoo.com>
Keene, NH USA

Cant believe i've found a site that can help me be with others who suffer the same pain as me. Felt like i was the only one having this awful pain.
Elaine <laneyte@yahoo.co.uk>
Glasgow, UK

Hello, I am a 29 year old guy from the Boston, MA area. I've been dealing with CH since I was about 22-23. The first few episodes were relatively short with long periods in between. In hindsight, they were definitely set off by drinking. IThey happened eevery night I would go out to my loca watering hole, but I didn't put 2 and 2 together for a year or so. I was actually blaming my neighborhood bartender for having dirty keg-lines that were giving me horrible headaches! Fortunately, I was diagnosed rather quickly and have a pretty well know neurologist a few miles away from me. I have taken tips and advice from this site, and other sites, for years now and have received great comfort from the support and advice I have acquired. I figuredI might be able to help someone else by sharing some of my expereinces. I have just started up my, what has come to be expected, autumnal cycle. Of course, the first one came after Sunday night football and a half dozen beers. I bee-lined for the verapamil, immitrex and the internet. I'm on the dosage of verapamil that i have found to be the most effective for me. 80-120-80 after meals. injections are the only sure thing for me as an abortive, but i thought i would share my experience with kudzu. I read about it for the first time recently and decided to order some online. It is relatively inexpensive and risk-free and that is all i needed for it to be worth a shot. i cant say for sure whether it is working or if this is a benign cycle, but i am not skipping a dose until i know for sure this cycle os over! i have only awoken once with ch during this cycle and not at all after starting kudzu regimen. to reinforce whats been said several times over, O2 is a god send as are my imitrex injections. i cant say for sure how effective the following have been, but they have not hurt: kudzu, melatonin and no booze. cutting back on smoking helps. one other thing that sticks out is that i have held three different jobs since my ch started. 6 of those years were spent sitting at a desk staring at a computer screen. the other two were spent at a much more active job where i did spend a minimal time at the computer, but was up and about for the majority of my day. The part that strikes me is that those two years away from the desk were ch free. i'm not sure if there is anything to this, but if it helps someone, i am glad i shared it. when ch is at its worst and i dont want to go on, i just remind myself of the good pain free times that i have had and that i will have. I live to take advantge of them. hopefully, you can too. jc
John <jcanavan99@gmail.com>
Andover, ma USA

Thanks for this site. After 3 years remission I went back in cycle hard and fast. I couldn't wait to get up to dose on verapamil so I fast-tracked it in 5 days. Big mistake! Now I'm chasing the night terrors with diazepam trying to figure out if seeing Satan is worse than feeling Satan. I got some relief cruzin the forums at 4am last night. Not much support in this part of the world.
Danny Foster <danny@thefosters.ca>
Dar es Salaam, Tanzania

Suffered with cluster headaches from approx 1960 until early eighties only found out they were called cluster headaches later on.One doctor told me you could not wake up with headaches nobody understood.Glad there is support for sufferes i feel for there pain.My only comfort i can offer is that mine suddenly left me and has not returned for nearly 30 years hopew this gives some hope.
Michael Clark <mike.clark20@live.co.uk>
Diss, Norfolk England

My CH's occure following a period of trauma or stress, usually following an operation and can last weeks. Only now has my GP diagnosed cluster headaches following a few trips to A&;E. Only relief comes with Imigran injections when an attack starts. They generally go after a few weeks and don't return unless I need another operation or go through a period of extended stress.
Neil Aspinall <aspinall919@btinternet.com>
Preston, UK

Just fired up again after nearly 2 years off. Thought they were a horrible memory never to return, I am convenced a abnornal 18hr drinking session kicked the cycle going again. I forgot how bad they were and I am so pleased there may be some help avaliable as in the past I just worked my way through the 3 per night hell until remision a couple of months down the line. Nasel spray or oxygen that's the question I need to answer with my GP. Not long now, 3hrs should do it before the first of 3 for tonight. Wishing all of those affected my pain free hopes and wishes. Matt
Matthew <tippers@earthlineltd.co.uk>
Marlborough, UK

Just found this site and it's been very informative. I'm going through a cycle of attacks now. Today it's been just sitting in the back of my head, just waiting to come out and strike. Of course, all things we planned for this week have been put on hold. I feel for each and every one of you that suffers like I do. Can't wait for this episode to be over.
Jason Scott Ball <chocolatemonkee@gmail.com>
Selkirk, MB Canada

Hello fellow clusterers. I'm 53 now and have had ch since 18. Was misdiagnosed for years. Took so many aspirins that I ended up in the ER with a bleeding stomach. Almost died, had 8 blood transfusions to replace all the blood lost. Dr. had to clotterise my stomach to stop it from bleeding. CH stopped for a while after that (I'm guessing because I got good blood) CH started again a year or so later. Usually a couple times a year for 2-3 month's. My wife found CH on WebMD and when I read it I knew that's what I had. Showed my Dr. and started getting the med's I need. Tried many but Imitrex and a ice pack work best. I'm now 3 weeks into a cycle. Usually occurs same time each day so what I do is take imitrex 1 hour before I expect it to start. Works most of the time. Usually have attacks at noon and 1 hour after I go to bed. The ones that wake you up are the worst. Cycle turned on me last night and came on at 7:30pm. Took imiterex and a ice pack and writhed in pain until I fell asleep. I have insurance but it has limits of $75.00 per month on prescriptions and imitrex is way too expensive. Hope cycle ends soon or I may go broke because I HAVE TO have the meds. I feel lucky I have a wife that tries to understand, but as we know...nobody really knows what we go through. Not working right now and actually that's a relief because I don't think I could handle it. Wish you all luck and keep trying different things, you may find one that helps.
Robert Smith <fandbbob@aol.com>
Los Angeles, Ca USA

Wow! That's all that I can say. I'm so pleased to have found this website. Like many of you I suffer from CH and have been suffering since I was about 12 years old and still suffer with them (I'm almost 22 now). I have seen numerous amounts of neurologists, local ones, ones from Children's Hospital in Boston, and even Tuft's in Boston. I have also tried accupuncture, herbal chinses medicine, and the chiropractor. I have been on soooooo many meds I cant even begin to remember all of them. Amitriptilean, Baclofen, Immatrex, Cymbalta, Inodmethicin, and Topamax to name about 1/4 of them. I had no relief with any. And for all of you out there trying Topamax - think again. I lost my hair, my face is scarred from breaking out, and I got down to 90 lbs (normally about 115-120). Although I have seemed to find no relief I have found that the chiropractor does help - but who knows I think I may have an underlying neck problem - but maybe not. My cycles usually start in September-October and last until atleast March-April. I have a horrible year and then a great one with NO attacks. It's such a tease - to lead a normal life for one whole year. I hate being on medications, I'm sick od going to the ER & having doctors tell me it's just a "migraine" and this is not an "emergency". I feel like telling doctors to shove it. Try living my life, wait what life? The life that you are peacefully sleeping then awakened by the worst pain a human can even feel. Thats the only way I can explain in. I find myself feeling irritable before an attack, slight neck and eye pain and then before you know it - it's happening. I'm crying, screaming, begging my boyfriend/parents to help me. I beg god to make this go away and that I'd rather cut my finger off than go through another attack. I can feel with all of you who find themselves walking around holding your head screaming in pain feeling insane. I feel as thought I want to die. Dying would be much easier than going through another MRI, another med, another opinion, another attack. I have done poor in school, my job, and I feel like no one believes me. If you're having an "headache" why don'tyou go lie down and take some asprin. Ha! I wish. I 'm afraid to sleep. I'm afraid to leave my house. I'm just so sick of this. Here I am sitting here after a long visit to the ER thesecond time this week...waiting to see a specialist - yet again. I want to know if oxygen g=has helped anyone and like others have said magnesium...about how much do I take? Anyone know of any specialists/neurologists in the Massachusetts area? Please email me if I can be any help to you, I know exactly your pain. :) Erika
Erika Johnson <erikaleigh12890@hotmail.com>
Bourne, MA USA

Hey there, first to Jeff Klein out of Bandera TX, I tried emailing you but it got kicked back. What type of Magnesium, dosage do you take that worked? Any side effects, willing to try anything. 37 now, suffering twice a year, for episodes that last about 2 months each cycle. On 320mg of Verapamil/day, take Zomig for abortive relief and on the O2 recently. The very sad part is Prednisone used to work almost immediately and this cluster took 3 rounds of 10mg for 12 days each and when I would begin tapering down the pain returned. I cannot believe it!
Chris M. <mattransfoursome@gmail.com>
Chicago, IL USA

Hey clusterheads. Mine started in tenth grade when i was 16, and I am now 21 and a junior in college. Around every start of november since that first cycle ive been getting them. and up to this year did not know about cluster headaches and took everyones thoughts of sinus or allergy headache or migraines. HA! my novemberly cycles last about 2-3 weeks and occur almost every day, 1-2 times a day. they are unbearable. today doing research ive realized that many of you out there suffer multiple times a day with no relief at all as chronic sufferers. my heart and strength are with you... holding the hand or looking into the eyes of a loved one seems to ease the pain a little bit for me. i also use vicks vaporub on my temple, over the eyelid, on the half of the forehead of the pain, and behind the ear which seems to kind of numb the pain with an icey cold effect. i read someone else post on here that magnesium over the counter supplements have cured them which i am going to try. i also read today that small amounts of lsd and "magic" mushrooms can end a cycle (read here, towards the bottom. http://www.miqel.com/clusterheadaches/clusterheadaches.html ) harvard is or was doing a study on it. i got a prescription for sumatriptan nasal spray which seems to abort the headaches during onset, but they only came with 6 in a pack which will surely go quickly at this rate. if you suffer from cluster headaches, i do too. and i truly feel for u and am with u at the highest bouts of pain. i love you all! looking forward to a cure. stay strong!
Jon Brauch <jbrauch@Kent.edu>
Kent, OH USA

I don't get Cluster's frequently...(Once every two months) But when I do...I get the full 10, the ones where I start begging for someone to kill me. The dance doesn't really work for me...because I end up not being able to do anything more than writhe in pain when it's at it's worst. It always happens in the beginning of the month when it does...and always early evening and lasts well into the night. I'll know because I'll have this little stabbing pain in the back of my head from noon until it starts kicking in. I've tried just about everything...and I'm slowly learning how to deal with them with self-discipline, and help from my loved ones. They all know when it happens...because I have a VERY LOUD yelling voice. (which usually helps vent some of the aggravation which helps deal with it!) The best I can say to any other sufferers is to find a single thought that you can hold onto to...whether it's a reason to live, or the fact that someone loves you...it always helps to have that single maxim going through your head. ~Hope I helped~
*prefers to be anon* <Yukikrustalle@yahoo.com>
Bath, PA USA

After 20+ years, two rounds annually (fall and spring) I know what this shadow feeling means when I feel it, here they come again! Going for my medrol dose pak and O2 tank today...wish me luck.
Lee Spell <leeboy3126@yahoo.com>
Kingsland, GA USA

i am now 3 weeks in to a bout and they are gettin worse. My boss said it is only a headache would like him to get a bout but i would not wish this on my worse enemy.
graham <grahamsw1972@hotmail.co.uk>
oxford, england

I was a CH sufferer 20 years before a finally got ch free, I started taking over the counter magnesium. It started when I was 24, every three years from November thru January, every night, three four times a night. I was taking Sansort, and later oxygen but they would always return. I used to get up in the middle of the night and run like a mad man down the street and that would finally get rid of them just to return again. One day I was in a book store preparing for the up coming round and ran across a headache book were a doctor gave his patient a shot of magnesium and it completely disrupted his cycle, so I decide to try take the over the counter pills and i haven't had a CH since 1994, 20 years of CH and all it took was magnesium. I know all to well the pain and suffering ya'll are going through, I've been there. I have even had doctors ask me 'WHAT DO YOU WANT ME TO DO ABOUT IT" can you believe that. They don't have a clue. My girlfriends uncle was a sufferer, I told him about magnesium several years ago when he was going through his cycle, he went out right away and bought some and has had a CH in over three years. I hope ya'll see this post and give it a try, I fell your pain. If you have any questions send me an email I will try to help. It may not work for everybody but I have run across several people who suffer and iy has worked for them. Mine started when I was 24 got a handle on it when I was 44, I am now 51 and cluster free. Like I said I can stress enough, I know what your going through. Good luck
Jeff Klein <jklein06@yahoo.com>
Bandera, TX USA

Well, here I sit at work (3rd shift) and just finished with my most recient attack, that would be the 4th one today. So I have been in this cycle for just over a month now and it has really ramped up in the last week, I am into day 6 having only had about 8 hours of sleep total for all days. It is a crazy feeling to think one is losing ones mind, but I really feel that once you fear sleep there is little else that could harm you. I was diagnosed 3 years ago, and my cycles are every 3 years. Can't tell you how many doctors gave me the run around, you know the drill, blood work, tension hedaches, migrane... blah, blah, blah... My last cycle lasted 4 months, I am hoping that this one is far kinder. I had gastric bypass surgery just over a year ago and that actually delayed this cycle by about 6 months. I have reciently gotten back into church and have tons of people praying for me... I also have within the last month met the woman that I am going to marry, she is not dealing with this too well, it frightens her... hehehe it frightens me... I have done the oxygen, ice packs, scalding hot showers, enough advil to make my doctor turn green... I feel there is no end in sight... I am afraid I am going to lose my job... I know this seems like a wandering post, but cut me some slack, I am really frayed... Anyway I am glad I found this place, and I hope beyond hope that I can find a trick somewhere on this site that will at least let me get some rest before I completly lose it.
JR Bodenheimer <imastomie@gmail.com>
Louisville, KY USA

I just found this site today and have gotten more information on these so called headaches than ever. I have been haveing them for about five yrs, but was only diagnosed a yr ago. Everytime I would go to the e.r. they would treat me like a drug seeker. I dont have medical insurance so its hard for me to get oxygen or meds. Some things work sometimes and dont at others. Thanks to this website I have more things that I havent tried yet like drinking water. will post anything that i find that works for me if I dont see it on here. Thanks again...
Trucker McNeal <trucker_mcneal@yahoo.com>
toledo, oh USA

Im fairly confident my cycle ended last night with a big bang. Today has only been shadows when I would of had the headaches. This is my 3rd cycle since being diagnosed with CH. I wish I would have found the site in the past to have someone to talk with who can truly understand the pain these cause.
Shane <shaneincarrollton@hotmail.com>
Carrollton, GA - Georgia USA

I am a 45 year old woman who has suffered with episodic ch since I was 9 years old. I've been to so many doctors and tried so many meds and nothing has ever helped. My last neurologist sent me to have surgery and the surgeon didn't believe it helped the ch so I didn't have it done. I use an ice pack to my right temple and the right back of my neck, drink alot of ice cold water rock back and forth and try to vomit the pain away.At times I beat my face into the bath tub or my head into the wall just to put the pain somewhere else. It all seems to be such an eerie ritual the pain, the suffering and the strange things you do to deal with it. I've been in a cycle of headaches for 2 weeks and had the idea to try a vick's inhaler which aborted the headache at its peak and has warded them off all week. I know this sounds crazy and it may not always help me but this week, today, I'm grateful to God that something has taken the pain away. I'm glad this site is here for the support and the crazy ideas that people do to survive. Thanks for listening.
Debi Hughes <countrycharmds@yahoo.com>
Stanford, KY USA

Hi All, this is a fantastic site. i have just found it. WOW. lots of good tips which will help me greatly. i will try the water treatment and see how i go, will let you know how it goes. have been suffering for the last 3 years, my pain management is pretty good, but i cant handle this. all the best, Richie.
Richard Fenech <spacemonkey8005@yahoo.com>
london, United Kingdom

I used to suffer CH in my 20's. Doctors said there was nothing they could do. I did some research and found vitamin A to be important in regulating fluid pressures. So I started taking fish oil pills high in A. My CH went away and have been gone now for 20 years. I don't if this helps anyone but it worked for me. Prior to the vitamin A the only thing that help was to go running when the CH started.
Tony Thompson <NevadaHominid@aol.com>
Henderson, NV USA

suffering since 1990
Shane Banfield <shane@thepaintshoppe.ca>
Grand Valley, On candad

i am now in my 3rd month of cl and slowly going insane.
alison runge <alison.runge@hotmail.com>
nerja, malaga spain

I was diagnosed 10 years ago after a traumatic evening of a severe headache accompanied by such pain in my right eye that I could not look out of it, pain in my ear radiating down the right side of my face, a sudden onset of flu like symptoms effecting the right nostril and when I looked in the mirror the right side of my face was red. The pain seemed to come in waves, I could not string a sentence together, over a period of hours it got worse, I starting vomiting between spasms. Eventually I reached the ER bowl on my lap and was diagnosed with CH, it was a relief to know what it was and what I need to do to help myself. Not anyone thing will suit any one person, I find that my periods can trigger the onset of CH also Stress if I get too hot, eat chocolate, drink alcohol. I take Amitryptyline and the injections which I detest but when it is bad I would take anything,I find that nurofen in the ghosting period can be helpful. It is easy to see why they call it the suicide headache, since I have discovered what triggers it for me I have learnt how to medicate myself and trips to the ER are hopefully in the past. It can be upsetting that people think the term Cluster Headache is just a headache, the term cluster headache I think belittle's it,it seems such an insignificant name for something which causes so much pain and distress. It is distressing to read what people are suffering, hopefully someone will find a cure. Donna
Donna Kearns <martin1067@supanet.com>
Essex, England

I'm a 33 yr old suffer. They started when I was 17. O2 used to work and work great...Nothing works need HELP!!
David <droemer78@yahoo.com>
Loomis, CA USA

Hi I have been suffering from CH for 8 years now. I finally found a doctor that figured out what I have. It been tough I wanted to die at times been in Er several times. I'm hopping the meds help. I'm glad I found this site to help me cope with this problem. Thanks Josh
Joshua <Jjosman0@yahoo.com>
Harrisburg , Pa USA

It very strange to see that there are so many of you who suffer from CH! For the past few years since this started I felt so alone thinking that no one knew this pain. But to find all of you here with all of this helpful information is fantastic. I'm 18, a freshman at The Ohio State University, and have been living with cluster headaches for the past 3 years since I was diagnosed. I feel lucky that my episodes only happen on sporatic intervals, not the day to day episodes of all of you. I can only hope that they do not become daily rituals, as I can surely see my health declining if they do. To help myself cope with it I take 2 exedrin extra strength every hour while its happening (which is usually about 3 hours). also, constant cold pressure(ice) helps a little. And lastly, although it seem contradictory to other sufferers, I refrain from doing "the dance" I find that the episode subsides much faster when I reamin absolutely still, and I mean statue still, for the entire episode, until it has completely subsided. I don't have the luxury of perscription strength medication (my physician does not see fit) so this is the method that seems to work the best for me. also, on a side note, I had an attack once when I had a cold and the generic "cold remedy" tablet I was taking also seemed to help end that episode very quickly (30 min.) Its hard to cope with these debilitating headaches when they arise during the day, and are a major inconvenience when I'm studying, or in class. I can only pray every day that they stay managable. thank you all for listening, and I hope that what I said might be helpful to any of you.
Vince Kuns <spongebobidol121@sbcglobal.net>
Highland Hts., OH USA

So painful. So painful. Someone has to watch over me when I get the attacks. Am 42 now. Lived with cluster headaches for over 20 years. Am a Medical Doctor by Profession, but learned a lot more from such interactive sites than from my books. Mine is a classic Episodic coming every 18 - 24 months cycle and lasting 8 - 12 weeks of 3 - 6 attacks per day. 45 - 60 minutes. As of late I started to have 3 hrs attack and on two occasions more than 14 hours attack. I am also type I Diabetic patient on Insulin for so many years now. I never used to take any medications for CH . I wait for its natural course to end. The reason is most of the preventive and abortive medications suggested are not available where I am. As a diabetic I can not take the Prednisone as much as I wanted. My blood pressure is always on the lowest side so I do not take verapamil. See, mine is so complicated. But recently I started taking Prednisone because the pain is getting worse and my present working condition does not give me the breaks I needed. I learned that taking Prednisone 50 mg per day reduces the attack to less than twice a week and it will start coming back when I tapper down. So I am taking course after course of Prednisone, until the bouts end. The best remedy I could say is a very hot shower, steaming hot! It aborts in 15 minutes if I get it the moment I felt the CH is coming! The other beneficial thing I learned is while having the attack, I constantly remind myself that it will be over soon and it will be over soon, it will be over soon and ....... It helps me to say that. Above all reading about other people experience is so helpful. I some times get some unexpected remedies from patients and I try them. Some work for me some do not. Like drinking too much water , sprinkling water on the face etc etc... they are helpful.
Mesfin Hailemariam <mesfin.hailemariam@gmail.com>
Addis Ababa, Ethiopia

I cannot tell you what a tearful relief it is to have found this site! 8 yrs on and off of CH cycles...diagnosed 3 yrs ago...everytime I feel the shadows starting I start my prednisone treatment...this has worked for me since it was first prescribed 5 yrs ago...I start with 15mg to see if the pain decreases,,,if not I up it by 5mg increments...usually 20 mg is all I need. I will gradually ween off the pred by 5 mg to see if the pain is still there...if not, then I ween off, 5mg per week... I feel truly blessed that this works for me. From reading all of your posts, I realize I am one of the lucky ones. I know the pain of the beast, as I have lived with him before... I have experienced the un-knowing doctors, the unforgiving bosses, the friends who "try" to understand, the failed relationships... The only "discomfort" (and yes, I am blessed to only feel it as a discomfort, I know) is from the side-effects of the prednisone, weight gain, mooning of the face, irritability, sore jaw, water retention, - all of this is bearable, compared to what I know is lurking behind my eye. I haven't seen any other posts regarding prednisone treatments...if there is anyone out there who has found this helpful, I would love to hear from you. If you have been on pred and found that something else has helped and were able to get off the pred, let me know. I feel like I have found many new friends, and I wish you all of the luck in the world in finding something that works for you to abate this horrible, debilitating pain. Julie Brockville, ON Canada
Jules <bvillec@hotmail.com>
Brockville, ON Canada

hello everyone,i have been suffering from these clusters since i was about 15,32 now.Didnt realize there was a site for this.Well the headaches are getting worse and lasting longer per episode,dont know wat to do anymore,work and family are suffering with me.Motrin used to work wen i felt the shadows coming,now not at all.Going to see the doc soon,man i hope it helps.God help me.
scott <fillyfan5@verizon.net>
fredericksburg, va USA

Well I have always had headaches but when my 1st son was born 16yrs ago my dr told me that they would only get worse and needless to say they did. At first we tried the narcotics for the pain but that didn't help and I DON'T like to take pills so I just delt with it. My dr retired and I started seeing his son and he asked me how often do I have headaches and my reply was all day everyday. I must add that my pain is not as severe as everyone else's so I really feel lucky. So he made a suggestion of a pill combination to try an Anti-depressant and a beta blocker high blood pressure pill. I was hesitant at first cause like I said I don't like to take pills and I didn t have hbp but I agreed. I started the pills and what do you know my headaches went away I was soooo happy. I stayed on the pills for a while maybe a yr or so and then quit. I started back taking the pills about 3 yrs ago until I found out I was pregnant with our 3rd child and I stopped and my headaches didn't come back. Well she will be 2 next month and my headaches have returned this week for some reason. After doing research I realize that the treatment I was taking was the most effective for me. I am very thankful that mine are not debilitating as most peoples are. I have never been diagnosed with CH. I do hope this helps somebody as reading these stories has helped me to understand that there are others that have these headaches.
Stephanie <sjmontgomery2@gmail.com>
Elberton, GA USA

I suffered from cluster headaches that initially were triggered by alcohol. Over the years, they came more frequent, worse, and occurred without triggers. I always felt that it was somehow sinus related. My occurrences always happened in the late spring/ early summer. I began taking a nasal steroid called Flonaise for my sinuses always swelling shut at night. I took this for about a month, then infrequently when my symptoms worsened. I have not had an episode of cluster headaches since then. That was almost 7 years ago. It may be worth some study. I hope that it helps someone else.
Joe Gridley <joe_gridley@live.com>
Gilbert, AZ USA

I was recently diagnosed with Cluster Headaches after suffering with them for a long time and being treated (wrongly) for sinus problems. I am still waiting to see a neurologist, but I am learning more about these headaches and treatment options every day and I am so happy to know that I am not alone anymore!
Tomeka <shaumelle1@yahoo.com>
Jonesboro, GA USA

Hi All, I've been living with CH for the past 10 years. I was extremely amazed when I discovered my neighbor also suffers from CH! What are the odds??!! I wish I had a cure for all of us, but yes, supply/demand will always dictate the world I guess. Hope you have some support to carry you through a cycle. Take care, JC.
JC <jancarelderidder@gmail.com>
Cape Town, WC RSA

I have had ch since early twenties.am now fifty three.was diagnosed with tmj. A problem with the jaw joint saw I wore different dental appliances which ruined my bottom teeth. Never was told it could be ch. Headaches will go away for a few years but then come back,usually last a couple weeks or more. Not able to work or sleep through the night. Take a lot of excedrin and imitrex works but headaches keep coming back. Going to chiropractor and doing lot of stretching of neck and back.this helps but headache still there. Have not tried oxygen therapy yet but sounds like that will be next. Went to neurologist two days ago and he gave me injections you hold against your side and press and med is air blown in.meet way to administer if you don't like needles. Headache goes away in minutes but lasted only about five hours. Went to walgreens to fill prescription and six injections is one thousand three hundred ninety five dollars. My insurance pays but this is ridiculous cost. Feel bad for people who dont have coverage.also they gave me prednisone on that now too. Still feel pain in head but not as bad. Will go on Monday to chiropractor again and I will go try the oxygen. Thanks for this website at least now I know I am not the only one with these ongoing headaches. At 53 getting tired of the pain. It is hard on me and hard on my wife and three children. Need to be at work so I can take care of my family. Thanks again.
Michael wolf
Missouri city, Tx USA

Hi ch friends. I'm 42 yo black female that has been suffering since at least the age of 4, the doctors say that's not possible..I remember everything about that night like it was yesterday. The pain everyone says they have them too....no way. I have had broken bones, 2 children natural but when the headaches start it is not something I can handle. I've never lived above the third floor or kept a gun in the house because the episodes are so painful. And most doctors wouldn't diagnose me because I don't fit the profile. I'm up now because Im afraid to sleep .....it's like a Freddy Cruger nightmare!!!! I've got a sleeping pill & Imetrex next to the bed & an ice pack ready!!! Good luck too sufferers
norvell <norvellj30324@yahoo.com>
garland, tx USA

Hello All. I was diagnosed about 20 years ago with CH's and have only had about 5 or 6 CH periods (that last about a month each). Obviously, because I'm currently in the middle of my CH period, I'm interested in learning more. To the extent that my CH is not chronic, I am thankful. Thank you for allowing me to learn more. So far, I haven't seen much discussion of exercise (running or elliptical) as a CH abortive measure, albeit I m sure I will find those posts eventually. This has worked most consistently for me. Earlier tonight, based upon information from the website, I suspect I was able to divert a full blown screamer with Red Bull. I m not looking forward to going to sleep tonight but it s time. BTW, In addition to exercise, I have Zomig that if taken early enough has helped to dull the episodes. Thanks again.
Sam Saitta
USA

Hello everyone,after 2 years of pfd's the beast has returned. I hope to manage it successfully. Bless all of you and I'll stop in from time to time. Good luck!
Keith <keith.rocketdog@gmail.com>
Fallbrook, Ca USA

I am a 38 women who suffers from Clusters for the last 9 years
Michal
Haifa, Israel

This site is very comforting, as I have been dealing with these headaches since the early 90's. Doctor not believing, antibiotics for sinus infections, even surgery for deviated septum. Finally a name to it. What is most useful about this site to me is what works for some people. More importantly what seems to be a common thread, such as oxygen for example. Not to be long-winded, but thank god for this.
Steve <steveptrcc@gmail.com>
Fayetteville, PA USA

i HATE HATE HATE these gdamn cluster headaches! my husband suffers from those vile headaches! i hate the fact there is not a thing i can do to ease the pain! nothing like watching someone suffer and *you* feel like your hands are tied. i have dragged him to the hospital so many times, i am getting to know the hospital staff. i hate that our lives stop for the entire episodes. my heart goes out to the sufferers. believe me i know. if there was a magic pill that actually stop the cluster headache that would be a freakin miracle. pray for the day! btw- I hate those gdamn cluster headaches!
Suzy <themrs916@yahoo.com>
pekin, il USA

Hi fellow headbangers! I'm in the middle of a cycle that has been persisting for nearly 3 months, prior to that my last attack was over 2 years ago so naturally I thought I might be one of the lucky few who the devil stops chasing - but how wrong I was! it feels like he's making up for lost time - yesterday he hit me 7 times and I'm starting to consider a long walk off a short pier!! Does anybody know of any research being done, I really don't care how experimental they are I just need to do something. If someone told me that cutting off both of my legs would eliminate the attacks I would say "get out the hack-saw". Thanks for putting the site together, sometimes it's just nice to know I'm not the only one. cheers, Keith
Keith Thornton <thebigthorn@hotmail.co.uk>
Durham, UK

My name is John. For 28 years now I have been visited by the Demon every couple of years (18 to 30 months), for 5 to 8 weeks, usually 2 to 4 episodes per day. In every cycle, my most common time os 2:30 AM. I was first visited by the Demon when I was 18 years of age, in 1983 - when no one could even comprehend what I was experiencing. I thought I would kill myself just from the apathy of the disbelieving people around me. My pain episodes have been as bad as any described here. I can't believe I survived the self-torture rituals that distracted me from the Hell of the Demon! My brothers, I am there with you all! In 1995 I was saved - literally and utterly saved by a little sweet lady who mentioned that oxygen helped her diabetic migraines. Thank God for this woman! My life immediatelly had hope again. Since then, instead of two episodes a day, I get 4 or more - because the Demon has a job to do and wants to finish his work. I journalled 64 episodes in my last 7-week cycle - before the cuurent one. But, where life before oxygen was in no doubt going to end abruptly and tragically, life with oxygen resembles normalcy. And what my friends see in me a person who is nearly indestructible. The Demon has helped me become more patient and more appreciative of every single presious breath of my life.
John Nikirk <bigbroccoli@hotmail.com>
Sherman, TX USA

I have been suffering from cluster headaches for almost 20 years. I have them every 5 years in August. I am having now and they started July 30. I am a diabetic and have found that when my sugar level drops below 100. To those out there who suffer from the beast, Have yourself checked for diabetes. The first fifteen years, I did not know I was a diabetic. I don't know if this will help, but it's worth a shot.
Roger Keys <lonestar128@hotmail.com>
Lake Placid, Fl. USA

Great Site...thank you so much for the hard work in creating such a useful enviroment (not to mention support system) for us suffering from such a debilitating and emotionally tramatizing issue. I've been suffering for only two years (seems like an eternity) have found that oxygen and sumitriptan injections help, but not all the time. Just kind of bear with the pain ( a cold rag helps once in a while too). Really stinks when your five year old son sees his dad crying and screaming in pain.
Doug Swalec <dswalec@gmail.com>
Homer Glen, IL USA

I have diagnosied with cluster headach since 6 years , it was started when i were 18 , my first attack was nt sever as now i have the attack 1 month each a year , 100% oxygen releive my pain after 10-15 mins , when u having the attack try to forget the pain and think about something else , hot pillow also help me to reduce the severity of pain , may god releive all of our pain , with all my respect
mohammed jordan <athamneh1986@hotmail.com>
irbed, jordan

Hey all....been in the club for forty years....I have never met anyone with clusters. Stumbled across this site about ten years ago. Before then even though I had family and friend support, they really didn't understand. Am mid cycle of my current batch. Last fifteen hour perfectly foul. Thanks to you all for being there. Liz
liz
ma USA

Hi, I am a 26 year old woman who has only this year started getting cluster headaches. I am 5 Months pregnant and have had these crippiling headaches doe 3 months. My GP first diagnosed me with sinusitis and put me on OABS to no avail. I have seen my GP on a lot of occasions re my headaches but nobody seems to be listening to me. Obviously they can't do an MRI as I am pregnant, and I can't take any meds. These headaches are destroying me. I have a 2 1/2 year old son and can't play with him, bath him and sometimes even bath myself because these headaches are so bad. My relationship with my husband is being put under serious pressure because my headches don't just affect me they affect the whole family. Last night I had my worst attack ever, I honestly thought I was going to need to go to hospital....Nobody is listening to me, nobody seems to care. I can't go on like this!!!!!
Claire Farrar <super-c@hotmail.co.uk>
High Wycombe, Bucks UK

65 Yrs, and have known the Beast for more than 20 yrs. He was gone about 3 yrs, and just came back, with vengence! For several yrs used Migranol, very successfully! Got Imitrex injectors from ER and they were surprised when I returned the next day having used them up (duh! CH!) Last Neuro Doc (5 Yrs ago) introduced me to Oxygen and I love him for it! Also told me about Medrol Dose Pack, not to prevent, but to help break the cycle and seems to have worked now x3. Imitrex Tab works, but inhalant/injectable seems to work better. It is transient, I'm veriical, semi- mobile, and keeming TSSU! I'm Blessed!! LUG!
James Rockwell <Rockwelljw@state.gov>
Charleston, SC USA

So glad that I found this site several weeks ago. I read I'm not alone with this evil problem. Approx 8 years ago I developed the signs and pain that everyone is writing about. I only get this curse during the summer months. Got my First Cluster H/A while touring a garden. Found out from my cousin that her dad, now deceased ( Paternal Uncle) had the same problem during the summer months. The first Neuro Dr want me to give myself pain shots and use a nasal spray but I want to find the cause, not cover up the problem up. I was not impressed with his bedside manner. A MRI showed a space or two of my brain which later was interpeter as just " freckles" of the brain. I located a Headache Neurologist which confirmed that I did have Cluster Headaches. Topmax, Oxygen Therapy--8-9 liters during the first signs-- for 10-15 minutes , drinking caffene tea, wearing sunglasses, and trying to have good sleeping habits-- all have helped. I have noted now that I have been trying to get the headaches now when my sleep is broken up, as I'm a caretaker for a husband that is on hospice now due to cancer. The Odd thing is I'm a female,a Nurse, age 61 years and the only memeber of my family that inherted this evil problem from my Paternal Uncle.
Donna <Msdoddlebug@aol.com>
Raleigh, NC USA

Hi All: Have been suffering for 5 years now and now am at least not smart enought to order another beer when I having them. Sumatrampin seems to have worked well for me however the caffeine and excercise just make em much worse for me. Just started another round on July 25 my birthday after the last round which started on 9/11, which has been a pretty good break for me. I am no longer embarassed when people sometimes stare at me and laugh when I am under attack. If they only knew how tough we are for putting up with this disaster.
Daniel Sok <dansoknj@gmail.com>
Dayton, Oh USA

Greetings. Technology has certainly come a long way in 20 yrs. I had my last attack in the early 90's in my late teens then suddenly, three days ago, boom! an attack out of the blue and every bit as horrific as those 20 yrs ago - lasted nearly 3 hrs. I came across your website while browsing the many sites and updates on clusters and thought I would just say a quick hello. I know my case is quite unusual to have had a break for so long and I certainly hope the mot recent bout is a one off - I had been advised back then I would grow out of them and had assumed I did!. The one thing that amazes me is that 20 years on and the treatment still seems just as vague as it did back then. All the best, G.
G. <gav.amanda@gmail.com>
Dublin, Ireland

Having probs getting Registed to log in, What a great site, just came across it. I have suffered CH for 18 years first 15 years no doctor knew what it was I have had healthy teeth pulled was in hospital to have my wisdom teeth pulled I have been put on meds that have made me so ill I have been sick and that was added as a new symptom, I was sent to a lovely neurologist, who said tell me a bit about your headaches he said I cant understand how not one dr has uttered thr words cluster to you, I could go on and on I have never ever spoke to any other sufferers this is as good as the day I found Sumatripan. Donna from UK
Donna Ward <jnrmuso@btinternet.com>
UK

I've been sufferng from these headaches for 19 years now. I discovered this site 2 cycles ago and revisit every time another cycle begins. I'm comforted to know that I'm not alone in this suffering, and that someone (many someones) understand. Thanks for everything!
Dawn <notned01@bellsouth.net>
Palm Beach Gardens, Fl USA

A friend of a sufferer and I am in awe at the things I am learning from this site! I truly feel for people who have these. Anyway, just wanted to show my love for other sufferers. Keep your heads up!!
Nicole Wolf <bluestark07@gmail.com>
Anniston, AL USA

Im 26 years old and have had them for the past 9 years. The doctors just found out what i was suffering from about 1 1/2 ago. Im going through another cycle right now. I know they are going to get worse before giving me a break for a little while until they come back again. They hurt so bad and sometimes I really dont know how to get through the pain and no one in my life understands them. Im glad to find somewhere that others do understand the pain associated with CH. I never knew how many people actually suffered from them. The O2 therapy is not helping me at all. Has anyone found anything to lessen the pain? I wish they would find a cure for them cause it sucks to know that i will have them for the rest of my life.
Katie <KateL417@yahoo.com>
Pittsburgh, pa USA

what a terrific site, just came across it. so sad to read the stories of the pain and confusion of the new suffers and those of us that have suffered for years. had my first attack in the early 90's, went to doctors and was amazed that they did not have a clue what I was suffering with. I have had one small bout in the last 5 years, my new wife has not had the experience of these and I hope she never does. all of the times I missed funtions, the guys at work taking me home, being in pain for hours only to feel good when the attack stops. I sell oxygen for a living and had a family come in, they were desperate to find something that would work to cure their brother and son. that was the first time I actually talked to someone who knew someone that was suffering. we talked for hours and I told them what worked for me, I pray I told them something that might bring some relief. I found no drugs that work for me, dark room,air cleaner blowing air into my face and a visit to a chiopractor worked the best for me. when the pain comes know that you are not alone, know that life is worth living. It has been great to be free for 5 years and I pray they stay away. I do not have an e-mail account other than work, but I will visit again. maybe I will set up an e-mail account if one of my brothers or sisters want to chat.
wayne
omaha, ne USA

Hi fellow CH sufferers, I have been suffering from these headaches for almost 20 years now, In my 20s they were chronic and came everyday for about 10 years and then went away for about 5 years and for the last 5 years I have been getting them once a year for about 1 month only, thank goodness,, I am so happy to have found this site but so sad to see all these other people suffering thru what I know as brutal pain.. Keep talking and researching and we will beat this useless suffering. Steve from Hemet
Steve <sprinter200231@yahoo.com>
Hemet, Ca USA

Just stumbled across this site.I knew other people had these headaches as well,but I didn't realize all the little things we have in common.I will check it all out in a day or two when I have more time.I think I;m gonna like this site.
nate <tempivxx@yahoo.com>
austin, in USA

hi!new here,heard about this site from a new friend.she is the only person i ever met with ch,i have suffered for 46 years from it.docs always say sinus problems as you all know.i am in an episode at this time.2 or 3 a night abought 1 or 2 hours long.i thought for years i was the only person in the world with this kind of pain.but thanks to an acquaintance i met another person who suffers as i do.she is a nurse and she says she must be the only person in the world who has 2 friends with this problem. i think she is right.got to go,demons returning
joseph <hpafitter@yahoo>
middleburg, fla USA

I recieved my first introduction into hell 22 years ago. I thought i was having a stroke or something like it. I never told anyone about it until it was happening 4 or 5 times a night. My first trip to see a doctor was in fact a nurse practioner who was very caring & diligent. She diagnosed my ch after about 20 mins on the internet and a few well placed phone calls. This woman is an angel to me. We have tried it all after these many long years together. Im in the middle of a cycle now and a friend suggested this web site to me. Until now i had never even heard stories from another sufferer. I always felt alone in my pain. Thanks to all of you who have taken the time to put this site together & thanks to all who utilize it.... i no longer feel alone here on butte,montana!
bill <bjames1971@gmail.com>
butte, mt USA

Hello, I've suffered these clusterheadaches for over 20 years now. For years I have been praying to god for relief. And day after day, I experience the unanswered prayer. I have given up on prayer, if it was gods will for me, us, to be healed, it would have been done. It is redundant and ridiculous to ask god the same thing over and over. I have no faith in healing, only faith in what has kept me going, my imitrex injections and my oxygen.
Anthony <Xgyz@comcast.net>
Chicago, IL USA

I am 56 and a long time sufferer. They started when I was a child of about 7. I remember complaining to my Mother about these headaches and she would say it's just a "sinus headache" and hand me a couple of child's aspirin. Of course I didn't know any better. They stopped at about age 13 and did not return until my early 20's. I started going to see doctors and none of them ever correctly diagnosed me. It was not until I married a nurse who spoke with a neurologist who told her they may be CHs. It was the first time I had ever heard about them. I'd like to try and explain what happens to me. Mine start in June and December for the most part, but I have had them in the fall. Unlike in the quiz I found on this site, my left nostril is not stuffy at all, but my right nostril is. It is the left nostril that is bone dry and unable to produce mucus and where I believe the my CH's start. Many years ago I actually would sniff a quick hit of ammonia to try and get the mucus flowing and it sometimes worked. Desperate measure, I know, but it was better than another thought I had about sticking a screw driver through my left eye to relieve the pressure on the left side of my head. That should explain how painful they are to me. Anyway, when mine initially start, they start on any given day at a say 7:00 pm and then another at 2:00 am while sleeping. For the whole series that repeats, you could set your watch to them, although I also get one here and there throughout the day, but not everyday. They last 5 weeks. I have had them for so long and had so many of them that I KNOW when one is going to start. I get an unmistakable ever so slight dull ache in my head. I even wake now before they are full blown. I have found that if I go to the bathroom sink, turn on the hot water fully hot, pinch my right nostril and breathe in and exhale the steam from hot water through my left nostril only, that I can stop a full blown CH. It seems hot moist air works for me. The pain is not as bad. One other thought, most people can relate to the pain of a "cold headache" that a person receives from eating ice cream too quickly. If you are trying to describe the pain of CH to someone, try explaining a "cold headache" that can last for hours. Although we know the pain is different it may get you some understanding from non-sufferers.
pain, big time pain <happypooche@aim.com>
Philadelphia, Pa United States

I am a cluster headache sufferer for now 23 years. I had a post on this sight about 15 years ago of my ongoing episodes. I thought my headaches where over. I skipped 3 years but this year they are back. I had gotten sick with some bacterial infection and took antibiotics. During this treatment my headaches came back and are getting stronger. Its now been 5 weeks and no end in sight one to three episodes a day. Imitrex helps if caught on time but it hard to do that when you re sleeping. I am writing this because I saw something on the National Geographic Channel about LSD. It looks like some scientist have refined this drug without the psychedelic trip for the help with those with clusters but guess what the government doesn t approve. IF you have National Geo, check it out its call: EXPLORER: Inside LSD Education. This documentary on National Geo says they are able to eliminate the psychedelic part of LSD. This is a good thing because I do not like to trip. I can t remember what they called the refined LSD but i have it to record on National GEO channel on DISH NETWORK channel 186 7/18/11 Monday at 2pm. It doesn t work for everyone but they say it has an 80% good outcome. However you ve got these government bureaucrats that won t allow it. All i have to say to the gov, !@%& ouch. Please email your opinion to the FDA if you think this is worthy. I am 44 and am not sure if I can go through this again. I hate this crap (clusters) it is ruining my life again.
Russell King <rking@mercerfoods.com>
Modesto, CA USA

Been at this about six years now. Something has changed in the pain. I have had the curse life, shrieking headaches in the past. This cycle is not involving my lower neck and actually crossed over to the left side of my head. It is not AS excruciating, Thank God. I will take it. I would like to pass on a trick that seems to work for me. Trickle/run water over my neck/head. It seems to make the headache peak and end much quicker. Its usually a last ditch effort and does not seem to prevent the pain if I do it when I feel the onset. It is kind of a cold shock.
Ray <crpbkt@gmail.com>
Naples, fl United States of America

Hi, i am a 24 yr old "clusterhead", and have been for the last 4 years. I have one slowly growing attack everyday between about 11:00 and 16:00 in the summertimes with a peak around 14:00. After the attack i have a "normal" headache the rest of the day.. I am a soldier for the swedish army so i HAVE to get throu the pain! In the first years i saw it as an impossible to live with, now i take the battle agains the pain, and I win - everyday, but not without a fight as you all know. To all of you who live with it, deal with it and make it. Be proud, cus you take the hardest battles everyday, and you win. I am happy to just have daytime aches, to all of you with nighttime aches and multiple aches everyday, i pray for you!
Henrik <henrik.grankvist@live.se>
Sundsvall, Sweden

I am a 25 year verteran of the beast! And let me tell you what...i get these ch bastards 24/7. The cylcles can be short, like a month or so and they can be long....up to 6-8 months. I dont know how many of you folks get these during the day but i sure do and it is no fun trying to work in a hot shop turning wrenches while fighting the beast. I do get them mostly at night though. I am so happy to find this site and all of the support. Many of thanks to all that share. My wife just read some of the stories and is happy for me...she sees me go through the dance, the tears, the runny nose...droopy eye and all...but mostly the pain and can do nothing for me. I have yet to find a dr to help, but im still looking. Thanks to all
Gary C. Broadway <g.broadway@yahoo.com>
Waller, TX USA

Ｉhad cluster headache for 6 years, my cycle is 3 years, mostly will last for 30 minutes one time. But this year, because of the temperature is very high here in Shanghai, I was suffered a lot these days. Even in last night. By the way, I did not take any medicine, the way I do is switch my focus to the other things or find some place with lots of trees, especially with fresh airs, which helps me a lot.
brucebot <bruceboty@gmail.com>
Hangzhou, Zhejiang China

I am a 15 year old girl, and ihave been suffering from cluster headaches since i was about eight, i was diagnosed almost a year ago the reason it took so long is that because i was so young when they started i thought they were normal, and when i was younger i told my mum i had a headache and she would tell me to take some pain killers, but they didnt help cause i was so young my mum didnt even concider cluster headaches and neither did i, and to be honest i didnt even know what they were untill i was diagnosed. I still cant come to terms with the fact im ill and diffrent to everyone else. I have recived a big help from my school giving me a reduced timetable (in at ten some days and leave at 2 on others) to give me abit of a break and get more sleep. I have cronic cluster headaches, so i get them all day everyday all year and the gaps between are only an hour or so. Anyway i went to the doctors and luckily my GP was a headache specialist and knew what she was talking about and imediatly diagnosed me with cluster headaches no question. I have quite a server case i get arround 8-15 a day (when not on my meds) but she put me on verapimil (liquid, as i have a mental block to taking tablets) and they cut them down alot i got about 5-8 a day insted but it still wasnt good enough so i looked up other treatments and went back to the doctors, unfortuantaly my headache specilist retired so i was left out in the cold. My new GP referd me to the hospital but i unfortunatly the headache clinic doesnt take under 18's no acceptions. So once again i was left out in the cold i saw another doctor the next day to finally get this sorted, and he referd me to great ormand but they turned me down because i need a referal from the guy i saw in the hospital, so since then i have been left out in the cold, i have injections as an abortive method but would like to go on oxygen theropy i have heard so much about it. As it stands im still left out in the cold and i haven't got anyone to talk to about my condition. (Don't get me wrong, i have my mum and she is AMAZING about it all so are all my teachers other family and well my friends arnt so supportive but i just want to talk to someone with the same condidition as me or that knows someone with cluster headaches so they know what i am on about and dont think im mental, which quite a few people think) I have been suicidel before and was thinking about it, but thats the easy way out, and im no wimp.
Billie <billiemcsorley@googlemail.com>
Brighton, Uk

Hello all, I am a newly, self diagnosed CH victim. My last and first cycle was 2 years ago starting on the same week in June as this cycle has just begun. Two summers ago I went to the chiropractor and doctor trying to figure out what was going on with myself and they both looked at me like i was crazy. At the time i truly thought that i was having some kind of back/neck problem. After talking to a co-worker about my headaches coming back last week he asked me if I maybe had cluster headaches. I was like "what". I looked them up and was surprised and somewhat relieved to know what my problem is. 2 years ago they hit me when I would have drink and when i was sleeping. It didn't take long for me to figure out that i needed to move around, i would go for 15 minute walks @ 2 and 4am and the headaches would go away. Still thought it was my back or something and i just needed to walk it out. It was hell. One early morning while pacing back in forth in the kitchen and on the verge of going insane i thought for a second that maybe i had rabies. Around mid July they stopped and i was so happy they were gone and hoped that they would never come back. Well they came back last week but it sounds like I am lucky in the since that i get a burning/pain sensation in my neck just before my headache and if i act fast and start becoming active i can abort the onset of hell before it strikes. if at home i go the garage and start up the treadmill and in about 10 minutes all is well. if i do nothing then its pain on. I feel bad for the people here that can find any relief or have many of these a day. i hope it never happens to me, i am not sure if i could handle it. what i used to think about walking and being active to relief myself was due to a back problem. after reading about the O2 fixes i think now that the activity i do is just increasing my breathing and heart rate just enough to make them go away like the post i read about the women who hyperventilates for relief. Also i am sorry for the way i write, i know it may come across as gibberish to most. Thought i would jot some of my lifestyle traits down and see if there may be a common thread among us. - I do smoke - I am a social drinker and now realize after reading this site that some of my attaches were caused by sipping a beer. - I work shift work with rotating night and day shifts(4 switches a month) - i work with hydrocarbons(my first cycle started 2 years after working in a oil refinery) - I have sleep apnea and sleep with a cpap machine good day and i am glad i found this site.
Nate Stein <outfishing35@comcast.net>
Anacortes, wa USA

I found tears running down my face when I read the stories on your home page. It felt bizarrely comforting to believe that I was no longer alone with this.
Julie <juliehyland@talktalk.net>
London, England

It s been 10 years or more since my last CH, but I still get the heebie jeebies when I feel the tingling that used to start an episode. The Verapamil and Prednizone seems to have worked, or maybe I just outgrew them. Read somewhere that what triggers them is a spasm in the carotid artery, that when it loosens up, sends a rush of blood to the brain, usually around the optic nerve. I had noticed I had a weird feeling with my neck pulse that accompanied the aura, followed within minutes by one of those &$%%^%# headaches. During a headache, my neck felt unusually warm on the right side. Don t know if this helps anyone, but I found sometimes a hot pack on the neck helped a bit to slow down an attack if caught beforehand, a cold pack if too late to stop it. My best wishes to all here who live with this dreadful ailment.
Ken Schmidt <bisonjump@hotmail.com>
Anaconda, MT USA

I'm 42 years old. 2 years ago I was diagnosed with Temporal Lobe Epilepsy (TLE) and the Neurologist prescribed Topamax. Up until then I had often suffered from migraines. I no longer do, but since the TLE diagnosis, I have suffered from Cluster Headaches (diagnosed by my family doctor a year ago). He prescribed a "cocktail" of a strong over the counter painkiller (Mybulen) as well as an anti-inflammatory. I am in the middle of a cycle at the moment. It started last week Monday, subsided over the weekend and has flared up again since Tuesday this week (it's Thursday afternoon now). I've taken a painkiller which has taken the edge off but it's there in the background pushing behind my eye and my temple, poking at the top of my head and the base of my skull. I don't know what to do anymore - I can't afford to miss work and people don't understand when you tell them about CH. They think you're making it up.
Anne <chaanah@websurfer.co.za>
Johannesburg, South Africa

I get clusters. I've had them for twenty years. I was in an accident about a year and a half ago were I sustained a head injury. My head aces went away until three days ago. I thought I was Done with these Bastards.
Damon Junior <ljunk71@gmail.com>
Santa Rosa, CA USA

Hi! i am a very new member to this site. A very close friend of mine showed to me this site. I am 28 years old and i am suffering from this hell-cluster headeaches the last 7 years. I am tired all the time passing through all kind of doctors trying to find something that can be helpfull for me , at leats during the attacks. Recently i discover that my uncle (63years old now) he was suffering for years by Cluster Headaches ..and he proposed me a trick that he tried by himself and it was quite effective ! ...He told me when you feel the first attack USE IMMEDIATELY ZIVANIA ...DONT drink he told , just wet totally your hair and by it , put again and again , and also put some under your feet !! ..IT WORKSSSS !!!! IT HELPS ME A LOT !!!! I am not trying to sell it or smth , i am trying to HELP cluster sufferrers JUST LIKE ME !!! Just try it !!
Spyros <spyros_oly@hotmail.com>
Nicosia, Cyprus

Hello Ive been a sufferer with these terrible headaches since i was eleven years old and have just started another bout at the age of 45. When is this pain going to end.Im so pleased to have found this great website and know that im not so alone . Most of the people i talk to really have no idea of what we cluster sufferes go through and think im a drama queen.At least im amongst friends who know better!
lynne carter <lynne_carter@hotmail.co.uk>
corsham, wilts England

I am 21 years old i have been diagnosed with CH for 4 years now. Everyday for me is a constant struggle. My last episode lasted 10 weeks and i had a remission for about 4 weeks but im currently back with an episode its now day 6. i get about 8 attacks per day sometimes i dont know what to do. i scream i cry i take my oxygen nothing ever seems to work. the pain is just so pulsating and throbbing it feels as if an octopus is in my brain and hes trying to suck out my eye from the inside. its hard because my parents dont really understand my father thinks its a regular headache and my mother doesnt know how to react. my boyfriend is the only one who makes me feel comfortable he understands the screaming and rocking back and forth make me feel better. CH has taken over my life i wonder if ill ever get to enjoy anything but the pain.
Meagan <meaganrivera24@yahoo.com>
Salisbury Mills, NY USA

I am the wife of a clusterhead. My husband had these CH a couple of years ago and they went away but are now back. I am so glad to find this website and the helpful things in it. My husband suffered a stroke back in December and was just starting to get back up on his feet when these CHs started again. I have watched him suffer over the last few weeks and he has even been hospitalized for CH. His neurologist has put him on new medicines and he was taking the Imitrex shot but has now been switched to the nasal spray and is on caffeine pills. It breaks my heart to see him hurt so bad and not be able to do anything for him. I pray every day that these things will go away. He has 4 and 5 CHs daily and about the time he gets good and asleep another attacks him. He is also trying to hold down a job. If anyone has any suggestions, please let me know. And if anyone who has a loved one that suffers with this knows of anything that I can do please let me know. Thank you so much for the information and god bless all of you.
Melissa Worley
Greenville, SC USA

After 20 years of suffering my Doctor gave me something that at the onset of these miserable things within 10 minutes yes 10 minutes it's gone. I am now injecting Sumatriptan 6mg/0.5mL. I am fortunate to be retired from the military and I only pay $27.00 for six injection tubes, the Pharmacist tells me they cost around $100.00 a piece but hey, I'll bet most of you out there who suffer from there damn things are willing to pay that much for something that may give you relief. I am thankful to God I have found something that finally works for me after 20 years of tearful headbanging hapless pain. Good luck.
Chris Lucka <zmanccl@yahoo.com>
Crown point, IN USA

Ended up in the ER last night and they diagnosed me with CH. Experienced these headaches about two years ago and they went away. Now they're back and I can't help but worry about when next one will hit. Last night's headache dissipated after some narcotic treatment at ER but when I arrived home I went to sleep only to be woken up by another at 2 a.m. That one took two hours to go away. Incredible pain. Tried describing it to co workers, friends and family members but no one really has a clue to how bad the pain really is. At least I'm not alone. Can't say it's nice to know other people experience the pain I do but it's nice to know.
Tom Hood <t.hood49@yahoo.com>
Sedona, Az USA

I'm a 57 year old female and I have been have CH for about 20 years. I always thought that it was sinus problems. It got so bad that I was having problems with my vision in the day light. I went to my eye doctor and she told me I had Glaucoma. When the pain continued she did laser surgery and put two holes in the color part of my eye she thought I had Closed Angle Glaucoma. When that didn't change any thing I was sent to a specialist from the eye institute. He did an MRI and told me that it wasn't in my eye it was in my brain and sent me to a Neurologist. He put me on Topomax and told me I was having Ocular Migraine. I had some problems with the Topomax and through research discovered that there isn't much pain with Ocular Migraine. He wanted to do a spinal tap and prescribed Vicadin. I found a new Neurologist who told me I was having CH. I have never heard of it and when I did research I found that I fit the defination except I'm female and I don't smoke or drink alcohol. Over the years when I would see a doctor I have been told that I must be sleeping with my eyes open to wear a mask. The doctor I am seeing now put me in Indomethacin and that helped a little then she added Verapamil. She took me off of the Verapamil and put me on Lyrica three weeks ago and did some blood work. I see her on Wednesday and am very hopeful that she will help me. That is my experience. Barbnow
barbnow <bn1117@charter.net>
new boston, mi USA

I am a 38 year old mother of two. This morning around 3 am I was awaken from my sleep with an excruciating headache. I could feel my head throbbing in my sleep. I tried to switch positions but could not get comfortable and could not make the pain stop. Finally, I got out of bed and began scrounging around for pain pills. I woke my husband who informed me that all we had in the house was Bayer asprin. That made me angry because I was shaking and my body ached all over and I could barely stand. I needed something stronger! Finally, I found some Aleve that I had in my car and took four of them. The pain deminished only slightly. I took four Ibuprofen and that seemed to help some. I went on in to work but the pain came back. I couldn't keep my head up so I just layed it on my desk for most of the day. I couldn't eat; I was just in so much pain. Again I took four more Ibuprofen and it is helping some. However, the pain is still there and shoots through my skull every couple of minutes or so. I don't know what to do. I hate taking medicine, espcially this often and this close together. Any ideas out there? Lisa
Lisa White <lwhitehot@yahoo.com>
Shreveport, LA USA

I have live with with Cluster Headaches for 13 years now, A Cluster Headaches is one big sines headache try sines meds every 3 hours and see for your self it will work but it want stop a cycle and the more meds you take the longer they will last. I have found a way to stop the cycle, Find a foam block that fits just right so you can lay on the effaced side you have to be able to lay on the point of your shoulder and every thing has to be strait and as soon as you fell that felling that one is coming on lay down strait away for about 5 min to 10 you have to be able to lie on you arm I find that one's the arm gets num the little man with the knife in the eye goes away it may take a day or so but the cycle will stop till next year that is, I think no I know the shoulder is the core's of Cluster Headaches and its the mussel that goes from the side of the ear the the point of the shoulder the one you can grab, The never that go into the neck around the ear get mixed up sending a pain into across the face into the side of the nose about half way along the side of the nose which in turn affect the sines then about 2 min's later bang Cluster Headaches it will take about 10 years to fell this happening. I see one lady said drink lots of water I can see why this would work as it helps the mussels clear up all the chemicals that float around in them. Maybe some one that is a doc will read this if not don't let it get you down to much you will get better one day I have lots more information if any one want to chat with me
leslie <simmy5girls@bigpond.com>
Geraldton, WA australia

I can't believe how lucky I feel to have found this website. Just to hear that other people are out there, understanding what I'm going through is such a comfort to me. I've only recently been diagnosed with CH in February 2011,but first began suffering early in September 2010. Like so many sufferers I can only describe it as the worst pain of my life. I truly thought I was dying. I found it so difficult to accept or understand what was happening to me, and as a full time employee it impacted hugely on my working life. I found it impossible to control the pain, staying calm was even more difficult. Within a month I must have visited my Dr almost a dozen times to no avail. I've lost count of the times I sat before him, tearfully explaining that I wasn't experiencing a migraine. I lasted only a month at work suffering constant attacks before I was taken to a meeting in HR with my manager and told that I was now 'a problem member of staff.'I was given a warning for misconduct for putting my head down on my desk. I'd never felt so frightened and so alone as I did that day. No matter how I tried to explain what I was feeling, I was ignored.They appeared to think I was 'putting it on.' Explaining that each night at home I lay on the floor screaming just didn't sink in. I left work that evening and didn't return. My Dr signed me out straight away with 'work related stress', however, a diagnosis was what was needed. That came in the form of my lovely nurse at the Neuro hospital earlier this year. Like so many sufferers I have been unsuccessful with high flow oxygen and I'm now using Verapamil and Imigran injections. I hate the injections of course but as with most sufferers, will do anything to make the pain stop. My last severe attack lasted almost 2 weeks in mid April (last month) and since then I am only experiencing smaller (shadow attacks) several times a day, however, I live in constant fear of the severe episodes. I've since left my job, feeling that I couldn't continue working there whilst my condition is so little understood. I can't help but feel that my CH attacks have robbed me of my living. However, on a brighter note, this website has given me peace of mind. Just knowing that I'm not alone in my suffering has done me more good than any medication.
Gem
UK

Hi. I'm happy I've found this site. I've suffered from CH for 13 years, was only (sort of) diagnosed 5 years ago. I am an episodic sufferer, experiencing 4 - 6 week episodes once a year, 4 - 8 attacks a day. Phew!! I have contact with a headache clinic that provides me with oxygene. I also get Verapamil for prevention and Imitrax to abort attacks. The Verapamil doesn't really work, - and I can only use oxygene at home. I feel quite invalid during episodes. Attacks are mostly 8's...rarely less. :-( I sure hate the beast, and hope to get better meds soon. Will get an appointment with Headache clinic..! God bless you all CH sufferers. Peace and love!
Anita Seeberg <agronita@mail.dk>
Skanderborg, Denmark

hey dont realy know what to say here but i get cluster headaches and am realy over them up to 10 a day no sleep. not happy
Peter Jonas <petej1973@hotmail.com>
Robina, QLD Australia

So happy to find this site. Found it and KIP scale yesterday. Been suffering with Clusters since like 95' when I wne to the emergency room for the 1st time thinking I was having somekind of weird stroke when my head exploded in pain and burning, and my vision and hearing started to go out. Now here in May of 2011 I'm having another session or season of CH's after thinking I had escaped when didn't have any for like 2 yrs, only to have the dread and depression of that familiar wake up at 1 -2:30 am of "Hi I'm back, let's go kneel in the living room and rock in pain until you can't take it any more, then we'll go some more, and i'll let you be with the understanding we'll play again tomorrow night, or if you're really special maybe at work where no one can fathom your real pain". I'm actually in tears to have found other people who really really understand what I'm dealing with. The pain, and when not in pain living in fear and dread of doing the dance again the next night, and feeling the tremors (shadows) telegraphing that "we're going to play the game again tonight". I've had a few doctors that figured out that I have the clusters, and have been officially diagonosed, and ran through the x-rays and cat scans, etc to make sure no tumors. "It's not a Tumor!!!" Had some of the quacks experiment on me "because i'm so rare, I never thought i'd get to try to treat something like this.." and give me migraine meds(verapmil or immetrex) that this beast can walk right over the top of like it's nothing if it's got it's claws full on into to me. About the only thing that gives me relief,(and it might just be a blankie to cuddle my mind) is to try to spike it when it 1st starts with a heavy cafiene boost, but if it's up and going it does no good. When I try the spike I do a coke, and 2 excedrin migraine, and drink the coke as fas as I possibly can,and then ice my eyeball, ear, and back of my neck to soothe the burning hunk of magma behind my right eye, and then rock with the waves of pain as they smash up on the cliff rocks. Again so happy to find people, as if does feel like I'm the only one a lot, and I get very snippy at the people who downplay my pain or think they understand and are acting like a normal migraine or tension headache, is even in the same discussion.
Dave T <davetaylor0909@gmail.com>
Thornton, CO USA

It's taken 3 Dr.'s and 3 years and I finally know what's going on. My dad had CH, but I didn't live with him, so I didn't know what it meant to have CH. Now that I have my diagnosis, I have started working out ways to manage the attacks. I'm in week 4 of this cycle. I was at my breaking point last week, unable to let myself go to sleep because I knew it meant certain attacks. Now my attacks are getting a bit more mild and I'm able to keep it to one a night. I have slept for two nights, all the way through, in the bed! (I had been sleeping in a chair in the living room) I'm so glad to have found this site. It's helped us deal.
Tom Sanders <belinoss@yahoo.com>
Orange , CA USA

I just finished a third round of cluster headaches. This time I found out that Vitamin D3 of 15,000IU per day (5000IU 3 times per day) helped out. The first and second night headaches were reduced by 50%. The third night I did not have any headaches and slept through the night. I did not have anymore after that.
JP <jpadvanceee@aol.com>
Edgar, Wi USA

Hello. I have had clusters since i was 15. i am 29 now. My clusters operate on a 14-16 month cycle. I take propanol 40mg, and 100mg of Sumatriptan pill form. I find that Hot shower and a strong coffee work wonders for me during my attacks. Also when having the attack i take a shower, than force myself to recall everything i did that week to this point. It distracts me from my episode. Also Deep breathing during my shower treatment. I fill my lungs to capacity during each breath, focusing not on the pain, but on the rising and falling of my chest, and the speed of the inhale, and exhale. Do not get anxious be prepared. Look at your cycle as an old friend, and think about it not as a diminishing point of your life, but as a period of reflection on your past year.
Anastasios Spiropoulos <taso_inspire_f.c@hotmail.com>
Brandon, mb Canada

Started at 16, not unusual. Not thing new every spring 6 to 8 weeks and one to two a day. No meds helped other than a lot to Tylanol and Cherry Coke. In 98 I suffered a stroke while recoverying a body in a lake... started to get worse... both spring and fall... then random. 6 years later suffered another cva no surprise after that got worse and worse... now for the last three years every day 4 to 5 times a day at least. No longer working, no longer leaving the house. Missing everything. Using high flow O2 helps 80% of time... still in hot shower paceing, cursing, yelling, crying screaming... passing out. Wife working to hard and making it work... God bless her heart... worried about it being to much... been going to long. Treatments other than O2, Nalbuphine, excedrine, soma and lots of caffine and a very large water heater. If I am not hurting I am crying all the time and not much else. Taked to Nero Doc about implant in brain... not many people have done it... about 50 he said, and 50% of them had some if any help or releife. 65 to 90K for surgery and high risk of damage or possible brain damage. At the end of the rope... on welbutearol... something like that... not doing much good. Good doc, understanding and been seeing him for over 12 years. Tried it all, meds, massage, accupuncture, botox, the back cracking doctor, waterx3 all of it and I do mean all of it. More worried about wife and kids than anything. She works to hard, and has been a care giver and supporter for over six years now... every day all day. Not much left of a marriage just becuase it is a caregiver realtionship now... not travelling any more, not even to my beloved home of New Orleans... Good luck all. Gods speed.
Jim Fowers <raptorspouse@yahoo.com>
UT USA

just a word of hope. i had a series of "alarm clock" cluster headaches in the early 1980's. i have experienced no cluster headaches since that time. for everyone experiencing this horrific condition, i pray your cluster headaches come to an end just as mine did.
al <letsrunbike@aol.com>
rochester, ny USA

Its been three years since I have had a series of attacks, I just finished one and i have been having them daily for about a week now. The pain has been escalating with each attack that I experience. I dont want to go to sleep and i am aprehensive during the day because they completely stop everything that I do.
jason <jmilling@stclaircollege.ca>
windsor, on canada

It's 10 am here, I've been awake for almost 24 hours, and I felt like I was at my wits' end just ten minutes ago. It's been almost two months since the headaches started and I have taken all types of advice and OTC medication. No one understands why I stay shut up in my dorm room and why I always say no to hanging out. I'm desperately trying to keep up with my classes that I can never seem to make it to... My mom thinks I'm just exaggerating the headaches and using them as an excuse to skip my classes. I even let myself be convinced by her that I was just being overdramatic. But after a few times of being in class fearing that I was mere seconds away from having a public meltdown, I decided to ignore her. But whereas my mom left off fussing at me, my sister picked up (and she is relentless). All I wanted to do this semester was make outstanding grades so I can transfer to another school next fall, but with these headaches and unmovable professors, I'm barely passing. The headaches really are terrible and they wake me up just a few hours after finally getting to sleep every single morning. They take forever to go away. I swear time creeps by. Then once the pain dies down enough, I only have about six (at the most) good hours in me before the pain takes me down again. I'm usually such an optimistic person, but I'm not anymore. I feel like this shadow of "doom" is always lurking behind me. None of my friends understand it, so after they tell me what I should do and it doesn't work, they give up and do something else. My family doesn't understand it, so after I get fussed at, they give up and do something else. And lord forbid I talk to a stranger about it. I'll really look like a crazy person then. And I seriously thought I was until I stumbled upon this site... I feel better having gotten some of this off of my back. It's very hard trying to carry this alone after everyone else has hit the eject button. One of my friends stopped talking to me after I got upset at him. I hadn't slept in days and needed more medicine so I was waiting for him to bring me some all day long. When I finally got him on the phone, he told me he'd sprained his ankle so he went home, took some pain medicine, and took a long nap. Plus, he couldn't help me because he was going over someone's house to eat dinner. It would be too inconvenient. Omg, I am crying even now. I can't believe how relieved I feel that someone else understands. I'm still depressed, but I'm so relieved that I don't have to go through this alone anymore.
Yasmin <kimorimia@yahoo.com>
USA

I am going to my Doctor tomorrow to tell him that what I suffer from has a name. I half feel like crying, half like laughing because these horrendous headaches that come for 6 wks to 2 months in the spring time and then are gone again, are not my imagination, a cry for attention, sinus, allergies, muscle injury, job stress, or other things I've been told. My first headache was in 1987. It has taken me 24 years to label it! Unfortunately, I am just exiting a 4 year remission (during which I was on verapamil for blood pressure). Exiting the remission caused me to "surf the web" for more info. In the past when I saw the term "CH," it was always lumped in with migranes and I kind of fit, but not really. I have a stack of paper to take with me tomorrow all highlighted with everything that fits (oh, so much). I want to try O therapy, hopefully, switch back to the verapamil and make this the shortest cycle ever. Wish me luck.
Linda Jester
USA

This could be a one off i really don`t know,my Niece went into a private hospital after months of keep going into the state hospital after many tests she was told she had cluster headaches, with the pains getting worse she went to a dentist and was told she had a dead tooth she had this taken out and has not had them since Hope it helps Tony
Tony Toohey <tony2926@googlemail.com>
LOUTH, UK

I have been suffering for 10 years, episodes between 6 and 10 on the kip scale. Verapamil has been the only medication that seems to work for me. I am looking for ways to treat the acute attacks, which all of them are. More research needs to be done , I would gladly voulunteer myself to find a way for all of us who suffer, as a test subject.
Steve Wilkerson <wilkersonsteve@ymail.com>
Grand Junction, CO USA

I've suffered from very frequent and painful cluster headaches for a decade now.. I have 2 words for those that suffer and do not get drug tested regularly.. these words are my miracle cure. I Do Not have cluster headaches anymore. I can drink, work hard in the sun, etc..My miracle cure has been used for Thousands of years in the Andes. It works. i have nothing to gain by telling you this info other than to pass on this blessing. Coca leaves or powder. It's a mild stimulant, does not cause anxiety like caffeine or ephedrine and works like magic. Mix the powder in a smoothie or shake, one to three table spoons per dose. You will find what works for you. Drink your water and take the Coca. It healed me. I get mine from mycocatea.com. Good luck!
charles saini <sainicharlie@yahoo.com>
asheville, nc USA

Phenylephrine HCL 10mg works for me... for 7 years I figured the pain behind ny left eye was sinuses. Last year, I for diagnosed via my Dr. and an ENT and a neurologist. I took the cluster Quiz. My headaches don't seem to get worse than "7". Last month I started having two a day. My prescription coverage provides 9 count 50 mg Sumatriptan per month. more than that is $7.00 (US) per pill. My headaches last 15 to 45 minutes, but I have always taken something ASAP. Once, I had to take a second Phenylephrine HCL 10 mg agter half an hour. My two a day dropped to 2 a week since taking 400mg Vitamin B2 before bed and 2 "Slo-mag" during the day. I suggest 10mg Phenylephrine HCL for those who are healthy and may be short on Sumatriptan.
James D. Williams <spikewilliams@insightbb.com>
Lexington , KY USA

I am new to this. My husband and I have been together for a yr and that first yr together no CH's. This is the first yr I myself have ever seen anyone with one. And for it to be the man I love really hurts me. He says this has been the worse yr he has ever had. And It kills me that I can't help him. I am there for emotional support, but I just wish so very hard I could do more. The last one he had was just awful and I met him at the ER. He thought that I was gonna have an anxiety attack.It was just killing me inside to see him in so much pain. I truely thought there couldn't be that much pain in the world, but I was proven wrong this yr. I just want to thank all of you on this site, You might not realize but you have helped him so much. He doesn't feel like he is the only one with these damn CH's. So thank you all! A loving wife in Idaho!
Lisa <not2cute2cuddle@yahoo.com>
Roberts, ID USA

Thank You, Thank You, Thank You, Thank You, Thank You, Thank you.....infinity. My husband suffers from these and this site has been a true blessing to both of us. Keep up the good work, perhaps the doctors will catch on...
Laurie <quigliee@yahoo.com>
wilmington, de USA

It's 2.42am and I'm so happy.... After suffering with what I thought was migraines for about 12 years my chiropractor mentioned 'Cluster Headaches' It had been mentioned to me some years ago but know one seemed to know about it then. I did some research this evening and couldn't believe how closely my symptoms matched everyone else's. After a 3 year break they have come back with a vengeance. 3-4 a day for the last 3 weeks. I have been using Sumatriptan for the past 6 years but this time it was taking longer to control the pain and I was getting worried. I was woken at 2am on the dot now for the 4th night in a row so I decided to try exercise. I got straight up had the pill, drunk a pint of water, got dressed and started running round the garden. I think it was the strangest thing but I was determined to try anything.......Success! It worked! I ran for 30 minutes. The more I sweated and became out of breath the less the pain was. I hate running but I just had the biggest smile on my face and was so happy to run rather than be in pain. I decided to spend the last 20 minutes signing up to this site and writing this, seen as though I would normally be hanging over a basin with my head in cold water now. I feel for anyone that struggles with this pain it's so hard to explain to non sufferers.
Marky Mark <mrk_entwistle@hotmail.com>
Christchurch, Dorset UK

I have had cluster headaches since I was 18 (I'm 36 now). I have tried just about every pill and remedy...the only thing that works is the O2. However, they still wake me up about 1 hour into the sleep cycle. I met a girl a few weeks ago. Things were going well until the cycle started. My cycles usually last exactly 30 days. I tried to explain these things to her, but I think she thinks I'm making them up...it seems like she is losing interest. Damn these headaches!
Michael <mar768@hotmail.com>
Shelburne, VT USA

hi, it's great to have discovered this wonderful site, so full of support and insight. i just got over another wicked cluster attack that woke me and am glad to say that i've recently discovered that a few cups of 100% columbian coffee did the trick again. i only recently discovered this and thought i would share with others since i recently stumble onto this website. i am an episodic cluster headache sufferer only since 2007 and can't begin to imagine what it must be like for those who have suffered these their entire lives or have these on a chronic basis--my heart really goes out to you. if you haven't ever tried columbian coffee, i urge you to give it a whirl. i know caffeine is already known to be helpful for some that suffer from cluster headaches, but caffeinated pops [known as soda to some! :-)] or other types of coffee are not really as effective to me as 100% columbian coffee. sounds strange probably i know, but it's true and it doesn't matter what brand either, i just buy the cheapest i can find. at the moment the walmart brand is the cheapest at $6.98 last i bought it which is a good price since columbian coffee has gotten absolutely crazy this past year. i haven't always been a big fan of the taste of coffee either, so i tend to mask it with sugar and milk to the point where it nearly tastes a bit like hot chocolate by the time i drink it so who knows maybe that has something to do with helping too, but either way, after drinking about three cups fairly quickly--not gulping it down, but one big sip at a time, then the next cup, then the next until i've had two, but usually it takes three good size cups (about half a pot altogether) then it doesn't take long after before relief starts to begin to set in. You can't imagine how happy I am to have stumbled on this. I'm still taking Verapamil (180mg once a day the past few weeks) and my doc has recently added an anti seizure med Topomax (50mg twice a day) I guess because this current bout that started up about 4-5 weeks ago has become far more intense than ever before and now radiates in my teeth and jaw, and down the back of neck and upper shoulder, still all on the right side though. i'm not sure either of these are doing anything though and i'm not crazy about the side effects of each. he finally gave me something that does seem to help a bit though that you take, he says only when the attack reaches the peak (what?, not at the onset? these things come on fast doc--how many times do i have to tell you?), one of the triptan products, zolmitriptan i believe, but only two boxes with 3 pills each and they take too long to kick in and don't seem to help as much as the columbian coffee! i wonder how much they cost too! i'm retired military so i don't know since i don't have to pay for them so i'd rather not waste taxpayers money on refills for something that's not any better than what i've found on my own! i only took 2 of the 6 pills he prescribed so far just to see if they worked during an attack. anyhow, i should mention one last thing before i close. and that is that i might be one of those rare people that can drink half a pot of coffee then fall right to sleep, but maybe that's because these cluster attacks take alot out of us and leave us totally exhausted when we are not in remission and that's probably why i never have a problem falling back to sleep, but for people that may be highly sensitive to caffeine keeping them awake, this may not be a good option for them if they get awoken in the middle of the night, but then the tradeoff might just be worth giving it a try. well, anyhow, if this suggestion helps just one person out there, then it's all been worth it. take care all and may god bless each and every one of you!
s. steffes
dayton, ohio USA

after nearly 2 years attack free i am now suffering again, between 4-8 attacks a day, the most excruciating pain i have ever had the misfortune to endure. my gp has now put me on epilim tablets for the first time as well as my verapimil but still the attacks persist. thanks to this site i now have more information to take back to my doctor to maybe help me.
jason belcher <jasonbelcher@hotmail.co.uk>
port talbot, w.glam Uk

I suffer from cluster headaches I have been admitted to hospital twice and spent 6 hours on a drip with morphine which seemed to do nothing. The doctors told me that they thought that it was migrains now I'm not sure. I get no warning when these attacks happen mostly it is in the evening when I'm relaxing and doing nothing, I can feel the pain gradually building up until I can't move or focus on what I need to do and need help walking and taking medication depending on how long the first hit of pain lasts, I have been taking a tablet called Imigran which I had to see the doctor for followed by 2 tablets called Maxydol which are a calming and anelgesic as I panic when the pain starts, which I think that it makes it worse. These tablets can be brought over the counter at the chemist, they put me to sleep within 1 hour. I have found that coughing from deep down seems to relieve the pain each time it starts up again or sitting straigt with my head as far back as I can and drinking plenty of water. I have also had a septoplasti terbonectomy reduction operation hoping that this would help that was only 4 weeks ago and am breathing better but is hasn't helped yet as I have had about 7 headaches in the last 2 weeks, the specialist told me not to count on the op helping with the headaches. I can now only hope that it helps.
Megan Rees <megglover@bigpond.com>
Melbourne, vic Australia

2;13 am still afriad to go to sleep very bad week 6 out 7 nights. i pray for release from this hell on earth.just burned up 2 years of sick leave built up in last 3 weeks. how do we even keep a job. june cant get here soon enough. by then all vacation time will be used. there is an end and i;m ashamed of my self for asking my wife to end this pain.....not sure i'm even sane anymore?? peace friends i wish y;all pain free nights n days
tom k. <tomcatting69@yahoo.com>
roberts, id. USA

Thank you for this site! I don't feel alone anymore. Very few people get it. I've been CH free for almost 2 years and now the Beast is back. Ahhh!! For the past 3 weeks 2 or 3 everynight! waking me up, excruciating, crippling, blinding... I have tried EVERYTHING!! I wonder what's the deep message behind them. I wonder if it's punishment for some wrong ever committed...
Maria <solstarone@hotmail.com>
Trinidad

I won't waste everyone's time with how my headaches feel, I'm sure you're all well aware. Just wanted to share what works for me in hopes that it benefits some of you. Magnesium Supplements, 200mg every morning and every night with copious amounts of water. If a headache does come on (I went almost eleven months without one recently), I kill it with Sumavel. This is a Sumatriptan injection that makes me feel like complete hammered dogsh*t for about half an hour, but it kills the headache almost immediately. Not saying it will work for everyone, but if it works for one of you, it's worth it.
Tyler PD <tylerpd1@gmail.com>
Brooklyn, NY USA

I found this site yesterday, and have been reading it non-stop ever since. I have not been officially diagnosed with CH, but after nearly 15 years of episodic, excruciating headaches ("headache" does not even begin to describe the agony) above my right eye, visits to at least 5 different doctors, Cat-scans, MRIs (I was convinced I had a brain tumor; negative), and finally a sinus specialist recommending I have sinus surgery (I never got it), I have finally self-diagnosed myself. As I read through thread after thread on the forum, I knew exactly what everyone was talking about: the cycles, the oh-no-here-it-comes "shadows", the droopy eyelid, the INTENSE pain that reduces you to tears, and 20, 30 or 40 minutes later is suddenly gone -- only to return with a furious vengance in your sleep. To be fair, after my CT-Scan and MRI, the specialist who recommended sinus surgery did say that I have an usually narrow sinus passage above my right eye, and that after I got a cold and a sinus infection came on, it would wreck havoc on the nearby trigeminal nerve -- triggering these headaches. But she never used the term Cluster Headache. And this sinus infection theory never explained why I'd get the headaches in the summer or fall, months and months after I'd last had a cold or any congestion. After being laid off from work a few years ago, I finally have med insurance again. And tomorrow I'm calling my regular doc and asking her to refer me to a neurologist or headache specialist. This past Friday night I had three attacks in a span of 4 hours, and the last one had me in tears, and begging God to "make it stop" for a solid 30min. This madness has got to stop.
Eli <ellisoneli@yahoo.com>
Seal Beach, CA USA

hate cluster headaches why me.
darren gaskin <dazza767@aol.co.uk>
wales, uk

This is the first time I have been to this site and i have to say I didn't realize how much these #@@#%@ CH have been affecting me emotionally. At least until I started reading the info in this site and started to sob. I think the realization that I am not alone has allowed me to release the stress from 23 years of suffering. I am 41 years old and have a loving wife and three beutiful children. But I never had anyone who I felt could understand what i go through when the CH hits. My wife trys to be understanding, but now I think she just gets sick of taking care of the family by herself when they come. Or, maybe thats just my own guilt. I started getting the headaches around 18 years old. I am a big man (6'-4", 290 lbs) and always felt like everyone would think I was a wus if I complained about the crazy headaches i was getting. After i was married (32yrs old), it became obvious to my wife that these headaches were much worse than I had previously led her to believe. My wife made an appointment with a doctor for me and insited i go. They did diagnose it properly and gave me Verapamil, imetrex, and put me on steroids until the verapamil started to work (thank you lord!). I am getting another ghost write now and do not know how much longer i can be on the site. God, please, please, please let this site still be active. The messages i have read have all been a couple of years old and i do not even know if anyone will get this. Even if it doesn't go anywhere, it has been an unbelievable experience to just read what is in it now. The only problem that i have with this site, is that i now know that these CH can become chronic. Gotta go now! God bless all of you!!!
Jamie <rtgllc@verizon.net>
west chester, pa USA

I am so thankful for this website. I truly thought I was alone in this. It is very daunting to know that it will most likely never go away. I have 2 small children and I pray that they never know this type of pain!! Thank you all for your support and just know that I am not alone.
Cassie <cassie.miller86@gmail.com>
Harrisonville, MO USA

Thank God this site is here. I have had cluster's for several years but free of them for the last 2+ until last week. Last night, my birthday, I had two massive attacks within 4 hours. The EMT's were called both times because of how severe they were. Lemme tell ya'll, O2 works for me. Today I went and got a script for O2. Thank God something works to beat the beast back into his cage. I hope and pray for all of you that you too can find something that works. This site is FULL of useful intel that I plan on using. Any of you in the Houston area that wanna get together and talk lets do that...Here's to everyone having a non event night......
Robert Potter <yellowhummer@gmail.com>
Conroe, TX USA

Hello everyone I am a suffer of CH which seemed to be all my life. I a 33 year old women and have been having them since I was about 6. I so understand why they call them suicide headaches. Oxygen does help a little but sometimes it does not I have been on sooooo many drugs nothing helps me. I put my head in the frezzer and that really helps alot but that does not help me outside my house. Right now im suffering on the left side about three to four times a day it never fully goes away. It's so hoorible i cant wait for something that will get rid of them altogehter. Taresa
Taresa Anderson <ataresa@yahoo.com>
Cincinnati, oh USA

So glad I found this site I suffer from cluster headaches and have done for a number of years they come in cycles over 4 to 5 years, I didn't know what they where until a friend had to take me to the hospital one day because it was so bad, the doctor then told me what they where, but no one knows why they happen, he said it can be related to stress. Stan UK
Stan <aztecinfodvd@aol.com>
Prestatyn, UK

Hello fellow suffers. My name is Jeff and I have been suffering from CH since 1982 I have had bouts every year except 1 yr i went 18 months without them. They are always on the right side of my head behind my eye.. Over the years i have learn to use an icepack on the right side of my neck to ease the pain.I'm am so greatful I have found this site. I hope and prey that one day they will find a cure, but feel we all doomed.
Jeff <jeff.mayer62@yahoo.com>
Sebastopol, ca USA

hi ive been suffering from CH's for close to 25 yrs!ive been CH free close to 2 yrs...until last week.God if i had the strenghth i would probably not be writing this now,i'd be headache free and 6 ft unfer!what a horrible feeling!been to er several times...meds such as imitrex,fioricette dont work anymore.they gave me morphine,imitrex injection,demerol,and nothing works!!!i really wish at this point i wouldnt wake up in the morning...that is when i can get to sleep...thanks for your time!good luck and gods speed to all my fellow cluster heads!
jim flynn <avrgjoe1234@yahoo.com>
lowell, ma USA

Hello Cluster Heads! Am so thrilled to find this site. Actually have to thank my wonderful daughter for finding it for me. It truly makes all the hell I have been going thru a lot easier to take. Luckily, she no longer lives at home and hasnt had to witness how bad things get. But just hearing about it from my poor wife, and imagining how bad they are, was enough motivation for her to act. She told me yesterday when I was thanking her, "I`ll get you thru this dad." She already has so many times. I havent yet recieved my verification e-mail that registers me on the site and will allow me to purchase a few items like the cool T-shirts and coffee cups. I have a lot of stories to share, including some of the things that I have done to get thru it. Its almost funny the things a person is willing to try, when they feel like they are dying.Maybe some of it will be helpful to others. Love Ya All Already!
Dave Landsmann <dlandsmann@hotmail.com>
Bradley, IL USA

i was diagnosed with cluster headaches about 15 years ago I have gone through tons of meds and prevenatives some stuff works, for a bit, and then it is like i become immune after taking meds every day. i would do anything to end the insanity at times! good to know there are others out there. i hate when people say they know what im going through they get migrains (they have no idea) dustin
dustin <dburger33@gmail.com>
flint, mi USA

Hi everyone. I have recently been diagnosed with Cluster Headaches during a 3 day emergency room visit last week. I have had them in the past, but was unaware of what they were. I have been a long time sufferer of Migraine headaches, and I used to think those were bad. I have heard you usually don't get both, but it has been confirmed. I wish I could say that between Cluster headaches I am headache free, but the horrible truth of the matter is that I have a constant headache 24/7, which has been going on for 2 years. I also get a bad migraine atleast once a week. I visit several different types of providers, and no one has an explanation. As horrible as it is, I am glad that I can finally put a name on the bad ones. When I went to the ER this last time, I was in so much pain that I was litterally clawing my skin off my body. I was screaming so loud, they shot me up with higher dosages of Hydromorphone (10 times stronger than Morphine, for those that don't know)then protocol normally allows. The meds were so strong that I passed out. Everytime I woke up, the pain came back again stronger than before. I stayed up as long as I could, but they came back just the same. I knew it wasn't a migraine, because migraine pain is constant, and a lot less severe. This attack came in what I call waves. They kept hitting me with Hydromorphone for three days straight. When they discharged me, they thought it was over. I got another one that same night. I was wondering if anyone else has ever noticed a warning before the cluster headache occurs? With migraines, they are called auras. I'm not sure if its related, but after I was diagnosed, I looked up info on them. It said pain and redness in one eye and eye drooping are a few symptoms. The site didn't mention if it was during, or if it could occur days before the attack. The whole week before the attack, all three of those symptoms happened to me. The drooping has happened with past attacks. They told me it was uevitis, but it seems like to much of a coincidence. I also experience numbing or tingling on the left side during the attack. I couldn't possibly explain the pain I had any better than you guys already have. My biggest concern is the impact on my two small children. Everytime this happens to me, they ask everyone if I'm going to die. They are so scared, and I can't reach out to comfort them. I can't take care of them when it happens, or even find help for that matter. Anyone that comes near me when the attack happens is scared out of their minds. As a woman with children, I can certainly say that cluster headaches are worse than child birth by far, and I went though labor with zero pain medication. I want to say that I appreciate this site, and also the members for taking the time to share their stories. Trying to explain to someone the pain who has never had them is like talking to a wall. Thanks again, and look forward to chatting with all of you. I will pray for pain free days for all of you! Oh...and if anyone has advice on what to say to my children, I would really appreciate it.
Melanie <prossermelanie@yahoo.com>
Port Saint Lucie, FL USA

I thank u for this web site. It is so hard to try and have ppl understand what life is like in headache season. When u arent suffering ur depressed waiting for the next 1, cuz u know there will be more. Its just so sad to know they always come back.
Tabitha M. <tabs0626@yahoo.com>
Spring Valley, IL USA

I was diagnosed with cluster headaches just over a year ago and have been a long standing suffere ever since. thanks to you website it has enable my partner to see that what she has to help me through is helping me even if at times i dont seem greatful due to the pain. the headaches i would not wish on my worst enemy and i cannot believe that there is not many Dr's out there that understand these Cluster headaches. to get mine diagnosed it to 3 Dr's and 2 Neurologist and a week stay in the hospital. got the diagnosis and the medication in the end but now this medication seems like its no longer working. just hope this period of attacks finishes soon . thanks for an amazing website to help myself and my family.
Will Cooper <illdo86@hotmail.com>
Scunthorpe, UK

I suffer from chronic cluster headaches, 14 years now and can not work because I am sick most everyday. I wake up around 4am with pre-symptions or a too late situation. I have seen several Neurologits and have tried many medications which only adds additional problems. I have tried accupuncture,chiropractors and vitamins. I have taken Treximet which is more effective for me but because of changes to insurance, I have changed to generic Sumatriptan and Naproxen Sodium. As you know, we only get 9 tablets a month which adds a great deal of anxiety. I cut my pills to try to get through the month. I also have shots and nausea medication. My headaches are through the back of the neck to the eye or it's in my face(Horner Syndrome). Horner Syndrome affects the nerves to the eye and face. It is caused by interruption in a set of nerve fibers that start in the part of the brain called the Hypothalomus and runs to the face. The Horner Sydrome drives me insane, I dont have pain but the nerve movement, pressure and swelling, congestion drives my crazy. I try not to take my medicaiton but I end taking it because I will get sick. The reason I have joined the site is that I have found something that is helping me. It is called Skinny Magic (sounds like a joke!) by HerbShop Inc. This is a appetite control dietary supplement. I buy it at Nutrition World. Immediately upon taking this I could tell it was helping me. It contains vitamins, caffine and other ingredients such as Dimethylpentylamine. Dimethylpentylamine has a small side effect regarding the constriction of blood vessels and is used in nasal decongenstants. Google it and read for yourself. I break the capsule in half and pour the powder in the smallest part of the capsule and dump it in my mouth. I can not take the whole capsule because I take synthroid. When I tried the whole capsule after several days I was really shaking and my thyroid hurt. I find its work best for my when I split it into small doses. Of course, this is not a cure but has helped me more than any preventative medicine.
StephanieMD <stephaniedean2@gmail.com>
Cohutta, GA USA

Hello again ev1 im bk again just to give u all a update ,,as iv been suffering 20 year iv been nearly begging my nurse at the hospital nothing is working there must be something else ,i ad to try a diff tablet along side my oxygen which iv been on 7 year n sick ov it now , this was bk in the november visiting hospital every other month still nothing ,, well ev1 i been to c my nurse again today n there is hope for us all ,, im going into see a doc at a london hospital who do operation as in ( BILATERAL SUB-OCAPITAL STIMULATER IMPLANTS WITH ELECTODES) so hoping in the next 6 months i should ov ad it done , it might not work but im gunna be strong n just hope it does il do anything to get this out my head , n try n av a bit ov life with my kids b4 their leave home ,,n av a life with my partner who it hurt aswell me been in pain it will be nice to be happy n go on a weee holiday ,,, i hope all u ch friends not aving to much ov a bad time with the demans xx ev1 tc n keep strong ,,il keep updating u all wen i get to go to london to c a doctor xxxx
sarah <sarah_carter2006@hotmail.com>
uk england, england

I started gettting headaches in aug. On Halloween I went to the ER and was told it was a migraine. Every day? Then my doctor said sounds like Cluster Headaches. I am allergic to Imetrix, and am on Topomax to help prevent the headaches. I am in tears. The preventatives pills are not preventing, the Epridrin is no longer available , and the excidrin migarine is giving me an ulcer. what do I do? i can't keep taking pain pills every 4 hours for 24 hours a day. I use to run marathons. now i am just a shell of my former self. i think horrible thoughts at night. no one really understands. "another headache?" they ask. i am only on 75 mg of topomax. i am scared when i am alone and i get these headaches, the thoughts that run in my mind scare me. is there ANY hope? i could cope if there was light at the end of the tunnel, but right now i don't see any.
Myrna Boettcher <Myrnaislovely@aol.com>
, il USA

I am a rookie with this, was diagnosed on Mon 25th & trying different meds to find what works, have met the Beast nightly for 5 weeks. and would appreciate knowing more about the triggers as I work thru the meds.Anything to get some relief until the meds start working. Thanks Stan in Katy.
Stan Tooke <stantooke@sbcglobal.net>
Katy, TX USA

i have been having clusters since 1986,they would come about every 3 months 4 about a wk. then 2 every 6 mo. finaly it was every 2-3 years.i found out by accident that if i feel one coming on i would take my meds turn on a heating pad put on pillow then go into a dark bathroom an take the hottest shower i could stand. after 15 min the pain would be greatly reduced.then go back to bed with the heating padon med or low .this seems to help me alot. about a wk ago my clusters came back (been 4 yrs) but these have been very mild.hope they go away an never come back. over the years i 2 have gone to hosp.,scream in pain an wished i were dead just to stop the pain .still here,its gets better. Brian.
Brian <kountrywarlock@aol.com>
Lawrence, Ks. USA

I have been an episodic sufferer for about 29 years now. My last cycle was 8 yrs ago and I had begun to think I was completely through with them. Finding your website has helped immensely, knowing I'm not the only one. Keep up the good work...
Dale Calvery <calizmir@hotmail.com>
Niceville, Fl USA

After reading many entries of others I feel like sharing a bit too. I started having these headaches about a six months after a serious car accident with head trauma when 16. My doctor at the time diagnosed me with migraines saying, "This seems like CH but you're too young and I hope it's not." I have since had only two other episodes in the last 16 years, both only lasting a few weeks. Until now. I have been having KIV 6-10 headaches 1-3 times a day, with 2 breaks of a few days(under 4) for 3 months now. I don't know how to talk about this to people. I'm finally trying, but I only worry my friends and family and often end up regretting the "talk." This site has encouraged me to get aggressive with my doctor about treatment. I have gotten pill form Sumatriptan and life style change advice (all of which I've taken) to minimal avail. I'm asking for more. I had no idea how effective some preventative and additional episodic treatment (Oxygen and injectables) can be. Thanks and best wishes to you all. May a cure for this sh*t be discovered.
Nathan Blackburn <dfusca@earthlink.net>
McCall, ID USA

Thanks so much for this site. It's distasteful and generally unwise for me to discuss the pain I deal with; lets not worry our family and friends right? It's nice to see I'm not alone in this. Thanks!
Nathan Blackburn <dfusca@earthlink.net>
McCall, ID USA

Oh boy, I had forgotten just how wonderful it is to be awaken a few hours after falling asleep and take the beast for a walk for at least 30 minutes or longer. And, to be completely exhausted the next day at work for a lack of sleep only to have to walk the beast again during the day, while at work. And, most of all, I had forgotten the joy of the immense pain that comes along with these wonderful headaches. I really missed all this fun stuff. NOT!!!!
Keith <nipitinthebud@comcast.net>
Tallahassee, FL USA

So many sorry tales out there. Keep strong people. A- typical Episodic Cluster sufferer for 30 years, thought it was only 22 years but after an 8 year remission - whammo - my little fiend has returned. well into my normal cycle of 1 - 2 months - a paltry offering to the forum compared to some, however, intensity was worsening all the while. Doc therefore changed my drugs and has recently put me on Topamax as a preventative (along with my trusty imigran darts by my side). The effect has been truly awesome haven't had a serious attack since and my darts can stay in their ridiculous plastic packaging. I know I am still in my cycle and I still get daily headaches to wake me from my slumber but it is now a pathetic 'level 1 grumbler' which is only slightly uncomfortable. I now dominate (nay, rule the world) and am able to abort it at will and quickly with my killer pill of choice and get back to sleep. I sometimes delay taking my abort pill just to show it who is the boss! Moral of my little story, if you haven't yet tried Topamax speak to your doc and give it a whirl.
Anon
Birmingham, England

I'm so glad to have found this page!!!! I have been dilling with these attacks for the last twelve yrs. I was 14 when I started haveing them. Since then I have been to several differant Drs but they all keep telling me the same old BS maybe i'll grow out of them one day. Well now im 26 and i cant get any goverment help and I cant afford the price of the scrips for as often as they acour. So i guess you could say i do the dance quite often. If anyone has any sugestions well I'm willing to try any thing once please fill free to E-mail me... good luck to you all.
Brian Taylor <Brian_H_Taylor@yahoo.com>
Hobart, Ok USA

After posting the other day, that night, I had two headaches. The second being about a 9. I notice today I had missed my night time 100mg topimax before bed. 5 years ago, traveling on my job, I had forgotten to put Topimax in my pill case that week and a cluster started within two weeks after that trip. My Neurologist raises my Topimax dosage to 200mg per day when the clusters break through (start). We've done this once before when the early sensations ( warning signs ) of impending cluster starting and with the 200 mg topimax perday the cluster never happened. I didn't have a headache last night after the full 200 mg of Topimax. I do know I had been missing my night time Topimax in the OCT/ NOV time frame, perhaps the blood level got too low to keep me from haveing this current cluster. I think Topimax is a key to keeping these headaches under control for me. Please check with your Neuologist. I know the cost of brand is outragious but genric is available. If anyone is experiencing the same results with generic I would love to get an eamil.
Bruce <montanamatt_1999@yahoo.com>
Rochester, NY USA

This nightmare started for me when I turned 21.Every other year in the fall the cycle starts again like clockwork. I always try to trick myself that the first couple are just a fluke and this could not possibly be happening to me again. Well I am now 34 and still tried to fool myself when this cycle started also. They started out in October as an attack once every couple of nights, progressing into getting them every couple of hours(night and day). The only relief I have gotten is from a short term high level prednazone taper, topomax, and oxygen. The sumatriptan sprays work pretty well but are so exspensive and insurance will only cover 6 days worth a month. Since starting topomax I now am only getting 2-4 attacks a day. Over the years I have been to doctors, neurologists, and have taken what seems like every drug out there. I hate that I feel that I am on the verge of losing my marbles and there is nothing I can do but wait for the cycle to go away. It wouldn't be so bad if the headaches just affected me, but they dont. I have a beautiful wife and three great kids and I know its been hard on all of them especially my wife. She is either getting me an ice pack, making the kids be quite because daddy has a headache, or explaining why I am not coming with them some where, not to mention the emotional frustration of watching me go through this. I would not wish this burden on anyone, but it is nice to know that I am not alone out there. Good luck to all of you.
Jake <jakewarthen@yahoo.com>
Creswell, OR USAT

Just getting over a Cluster ( I hope) It usually last 6-8 weeks with as many as 5 headaches per night. This one was only 3 week ( untypical) after almost a 4yr break. 200mg of Topamax, 200 mg of Lamictal, 200mg of Imitrex (geneic) tabs per day plus Imitrex inj as back ups when the really get out of control like 90 minute or an all day long test of wills. This seems to have put them in the background. Funny how everyone writes as if these headaches have a personality of their own! These headaches have been with me for 40 years, usually on an 18 month cycle. Thankfully I have a Neurologist how understands these headaches and treats them aggressivly.
Bruce <montanamatt_1999@yahoo.com>
rochester, ny USA

I was pain free for the longest time until one morning I woke up and felt a "twinge" in my right temple and I knew it was coming! It's scary to think about it but not having that kind of pain for so long and then WHAM, it's back with a vengeance! On oxygen and it helps alot.
Tina Belanger <txcheetah@yahoo.com>
Round Rock, TX USA

Well.... It started when i was 17......ended when i was 31. Whew Im 42 and its back!!!!!! Why me? I feel for you all. Here we go again. Carolyn
Carolyn Cole <coleranch@me.com>
Toronto, ON Canada

I have just been diagnosticated, I´m so sad
Christiane Pimentel <christiane.pimentel@live.com>
Zapopan, jal Mexico

Bad week. Had a couple of 9's and 10's. I've had headaches my whole life since I was in a car accident as a child in 1976 (hit head, unconscious, right side of neck and head), so I've become accustomed to the general head pain and daily headaches, but then a couple of years ago the clusters started. Ugly bastards. I hope I don't have to deal with the psychological and physical pain the rest of my life, 'cause during these 9's and 10's I just don't think I can make it through. They used to be 40 minutes in duration like clockwork, but this week I had a 2-hour 10 followed by a 2-hour 9 right on its heels. It was punishing. I can't do that again. Now my head rumbles all day, poking me saying "remember last night?, I'm waiting for you again tonight". Merry Christmas to all. To read other people's remarks is very helpful. There is some peace in numbers.
Ron Hjertstedt <Ron.Hjertstedt@gmail.com>
St. Paul, MN USA

I just found this site and am glad (correct word? not really glad ANYONE else has these) to see there are others who are going through what I am. I have been diagnosed with migraines 2 years ago. They were sporadic and fairly rare. I could hold on to the 9 Imitrex pills for months. Suddenly December 4, 2010 1:00am I had a cluster. I have had one every night since. I received the Imitrex spray prescription and codeine. My wife even brought me to the ER one night and I received a shot. I am afraid to go to sleep. I know my wife is tired of my complaining (even though I know she is concerned). I am jealous of the person who only made it to 7 on the KIP scale. Mine is a 10 every night. Thanks for reading my rant. We shall all be pain free someday!
Robert Alexander <RobertAlexander373@roadrunner.com>
Deerfield, NY USA

I am so glad that I have found this site.I have been suffering from as far back as 1975 and only recently found out about it.Just recently a very good friend of mine,Trevor Clark,passed away.He too,was a CH sufferer and we then believed we were the only two people who could go through such hell. wish I found this site prior to his passing away,it would have helped him so much.
Peter-John <peterjohnscholtz@yahoo.co.uk>
Nelspruit, South Africa

As a child from grade school to high school I suffered from migrains. They completley stopped once I hit the age of 16, and I never had another one. last month, I came down with a really bad flu and needed anti-biotics. the day after I took my last anti-biotic was the first 'cluster like' headache. This one happened during the day and lasted about 90 minutes. At that time, i figured it was a migrain, no biggie. The next night and every night afterwards(with ever increaseing intensity, I am now at a kip level of 7) I don't know what to do, I have a long commute to and from work, but not being able to sleep more than a couple hours at night is causing me to lose hours, and because of this, I can not afford to pay for any perscriptions a doctor may give me, so I have yet to visit a doctor knowing it is pointless anyways. i have found that when my nose starts to plug and my left eye starts to throb, I know as much as I think it will feel better, just touching that eye increases the pain after about 30 seconds after touching. So that may be something you might want to try not to do when your next attack starts. I wish others understood what we are going through. All I hear is just grin and bear it, like they have any idea what it is like to be scared to sleep at night, and have to function on just a couple of sporatic hours of sleep every night. if I have more than one attack in a night, I feel so drained that I can barley talk let alone function normally. Thank you for allowing me to rant and it is nice to be able to read others stories, and I really these CH's don't go past the kip 7 level for me, this is already a waking nightmare.
McLean <pindog_mclean@hotmail.com>
Brantford, ON Canada

Ive suffered from Cluster's since 1982, they normally start from " A lack of Stress" If I take a holiday or have a change in life's situation...... The episodes have lasted from 3 months to 14 months, normally 2-4 attacks a day. This episode started about a month ago,I immediately called the Headache Clinic in Calgary Alberta and spoke to a Neurologist, ( I have been a patient there for many years) They prescribed Verapmil slowly going up to a dosage of 360 mg per day, and it seems the attacks have been stopped. I still get the symptoms of attacks a few times a day, espically after waking up from a afternoon nap...But no great pain to speak of...about 2 or 3 on the scale.I still get the confusion, unwell feeling but it is a great relief. Ive only had to take 3 imatrex injections so far, in a normal cycle of Cluster attacks Id be at close to 100 in a bad month. In the past 28 years I have tried and been experimented on with everything and anything that was recommended and so far this has been the best solution. Stay well everyone and Dont give up... Wayne
Wayne Perry <perrywr@hotmail.com>
Cranbrook, BC Canada

I came across this site while trying to do some research on these headaches. I m 33 years old and I ve been suffering from CH for the past 5 years. As I kid I used to get migraine headaches all the time. Then throughout High School and College they just seemed to go away. When I graduated college in 2000 my migraines started to come back, but it wasn t until 2005 that I started to get these Cluster Headaches for the first time in my life. For the first 3 years I didn t think much of them and I basically just dealt with the pain and took over the counter meds. I figured it was nothing serious and eventually these things will go away. Well 2 years ago I finally said enough is enough and went to see the doctor. With the exception of the imitrex prescription, nothing my doc did or said seemed to help and I m still suffering from them as of today. It is a little bit comforting to know I m not the only person who is suffering from this. My friends and family just don t understand when I try to explain the pain and inconvenience associated with these attacks. I hope to find some useful information on this site.
Wooster <dbiondi001@msn.com>
Morgantown, WV USA

Hey there all well where do I start, my first post on here I am glad that I came across this site. I have been having this things from far back as of 1989 or before. I been to so many doctor that seems to want to treat me like a project(lab rat) lol. The worst one came while I was in iraq while in the middle of a fire fight it had me on pins n neddles to say the lease..I am so sorry that other suffer like I. I would love feed back on what any or you do to just get by when they hit. Thanks for your time...Toney :)
Toney Walker <toney.l.walker@us.army.mil>
Fort Worth, tx USA

Hi everyone, I am 22 and I have been suffering for 12 years with my cluster headaches. Honestly I didn't even know what it was until I came upon this site, as most of my doctors have diagnosed it as migraines even though I don't meet a lot of the symptoms and my pain seemed much worse. Honestly I am happy to know that I am not alone (don't get me wrong, I feel aweful that there are others who suffer like me, but hey, at least I don't feel crazy anymore). People always told me I must be over exaggerating, that no way a headache can hurt that much, and it is so hard to explain to a person that it is not just a headache. Currently I am in the middle of my cycle, and it seems to be getting worse with age, I usually get hit with a 7 or 8 on the Kip Scale but now every other one has been a 9 or 10, where honestly I feel like I am dying and I just rather get it over with. I am eager to go see a doctor who knows what these are because all of mine are just mis informed. I am surprised my boyfriend hasn't left me, I have been waking him up three times a night with my headaches, but he really does a good job of just being there for me and not bothering me....I just wish there were more answers, like why? Why does this happen? Will it ever be over? Please help!
Ally <ally1125@gmail.com>
Brooklyn, NY USA

Well... Hear I go again. Off to work and my focus is.. you guessed it- when will the monster hit me next?
Gary <captmojo40@aol.com>
Lakeland, Fl. USA

OMG! I stumbled upon this site at work and so not getting much done! Ive been a clusterhead since I was 14 (28 long years ago lol) Oh no, over half my life! NZ must've been a trial site or something for Imigran which is the little Sumatriptan Succinate injections because I've been using these during episodes for about 15 years and I've gotta say they are the bomb! I also use Nurofen Zavance (200mg Ibuprofen). I try these before the pain gets to around 6/7 and then use the imigran as a last resort. It says on the instructions for the imigran to not take more than 1 every 24 hours but my neuro said just go for it as long as its not more than 2 in an hour - apparently it doesn't stay in the system for very long anyway. Have found Caffeine good when the cycle starts out. Also, a doc prescribed me an ergotimine inhaler back in my early twenties which worked ok for awhile but found I got immune to its effects. The problem with Ergotimine is if that doesn't work, you cant have imigran. Same thing happened with a couple of other drugs the docs tried out on me but so far (touch wood) the Imigran has worked. I stock pile the imigran on the off months ready for the beginning of the southern hemisphere summer which is when I generally get them. I try and keep the imigran as a last resort though as I'm scared that one day it wont work. God knows what I'll do if that happens. Oh yeah! I thought I'd give the chiroprator a go last year too and the back and neck crack gave me quite a bit of relief! Shortened the normal period of 2 months down to a couple of weeks! And when I did have a CH it wasn't the normal body and soul sucking demon - just an angry little imp! But then tried it again this year and doh doh - no luck so far but will give him another go cos the first night I did have an uninterrupted sleep. Pete, my chiropractor also showed me a place on the eyesocket to massage - this also works ok at the beginning of a cycle. Its under the eyebrow kind of on the ridge of the socket - you'll know when you've found it, it hurts a bit. He reckons massage this for about 10 seconds at a time. What else? hmmm Cant think of anything else at this time but that's probably because I'm in the middle of a session at the moment and my brain feels bruised. Just try and keep your all the bits that work for you on your bedside table and dont panic, just wake up accept it, take your drugs and think about it coursing through your veins and fixing you up. I know it's hard but really try and relax as much as possible while the drugs take effect. Definately recommend the Imigran injections though!! I dont think I'd be completely sane without them.
Cherie <cherie11269@hotmail.com>
Auckland, New Zealand

hello everyone, my dad has chronic hc for 8 years now. But right now he can't handle the situation anymore. it's 10 to 3 at night he has been sleeping for a half an hour now. Today i saw him crying for help, shaking on his legs from being so scared. he had 5 imitrex injections allready. normally 2 is the limit. but he isn't able to handle it anymore. He's in a lot of pain and is becoming so desperate. We are trying to give him as much support as we can. The only thing he has now is his family and god. He tried allmost every med from a -z. tonight he spoke to me about "if something happens to me......." i have exams tomorrow can't sleep because i'm so afraid .its night but i'm trying to find solutions....:s well i've been praying so much for him. hope god hears me because i doubt it more and more. :( thanks to this site i can maybe go to sleep and free my mind
p vdb
Belgium

Just found this site. I wanted to add myself to the list just to add support to the numbers, if nothing more. I have read many of your comments and stories and now I don't feel so badly. I only have attacks once a year or less, usually in the late fall or early winter. They last only a couple of weeks or a month. Usually at night, once I fall asleep, I wake for 30 minutes to 6 hours with a severe flare up. Then the fkn shadow follows me 24/7. The stories and suggestions here are great to read. Lots of information and things to try. I will try to share my details and the things I have tried and learned when I have more time. I read elsewhere about using Melatonin and that has helped immensely this round. I have noticed in the past that beer and alcohol are primary triggers and I confirmed it once again last night. Had a few beers before bed and had the worst episode (probably about 7 or 8 on Kip's Scale). I have been avoiding drinking for the last couple weeks (my Achilles heel, I love beer) but I was foolish enough to think I could get away with it. I must go (work and Coffee are calling) I will post more later. I will be here everyday, for certain... at least until my cluster ends. Dan
Dan <danhuzyak@gmail.com>
Austintoen, OH USA

Diary of my Cluster headaches: To begin, this is mostly for me to put on paper exactly what my experience has been from the headaches I am attacked with. I have been experiencing the headaches off and on since roughly the spring of 1996 when I first moved to Seattle. I would to go to the skatepark downtown every day. One day I was skateboarding when out of nowhere I felt intense pain behind my right eye. It was like someone had a voodoo doll and was getting their kicks off of jabbing me. I could not sit still or think straight until the pain subsided which could be up to a total of 2 hours on the worst days. I did not go to a doctor until roughly 2000 for this problem as it was not very often and I had no insurance at the time. Eventually I was referred to a ear, nose, and throat doctor by a friend whose daughter had a similar problem. He diagnosed me with acute sinusitis and performed a surgery to basically help with drainage of my sinuses as well as get old stagnant bacteria out that he thought was causing the problem. It was an amazing feeling to take that first breath through my nose the next day when the gauze came out of my nostrils. It was such a relief to think the horrendous headaches were behind me and gone forever. I would be greatly disappointed:( So for about two years I felt fine and appreciated the miracles of modern science. Experiencing only the occasional mild tension or dehydration headache which was like a trip to the candy store in comparison to the dreaded throbbing stabbing pain behind my right eye. Then in the spring of 2002 I decided to go to my hometown to visit friends and family in southern California. While on the trip I got a headache. I knew right away what it was and my heart sank. I just sucked it up and stuck it out while I was there. But I started doing research and tracking what was triggering them when I got back to Seattle. I noticed for example that if I drank alcohol this made them triple in intensity. Also if I smoked that was bad and later I would suffer terribly. The worst thing however was when I would go to sleep. It was as if the headaches were fucking with me because I would wake up at least two times each night agonizing, making my days short on sleep causing me to nap which ironically brought on another headache creating a cycle of doom. This also had an effect on my relationships. My girlfriend at the time seemed to be annoyed with my whining and waking her up at night. Work sucked too, and my boss hated that I would have to stop work to splash water on my face for forty five minutes. I'm telling you, unless you have them you'll never fully understand what this affliction is like. I have contemplated suicide numerous times just to get out of the pain. No joke!! After making it through the period in 2002 I waited to see a doctor until the next cycle in 2004 after getting a couple remission years. One of the things that s lame is that they do stay away for long expanses of time before returning. So it's just a wait and see deal. When they started this time I went to my regular family doctor and got a referral to see a neurologist. He listened to my story and the accounts of my current attacks and diagnosed me with Cluster headaches. A little known incurable condition where the cyclical pattern is the predominant reason for the diagnosis. I immediately started researching all I could on this and found that it had to do with a vascular surge of blood flow to the brain that puts pressure on main pain nerves close to back of the eyeball. Hence the pain I feel. The trigger of this blood flow has been linked to the hypothalamus part of the brain which controls sleep patterns among other things. No one really knows exactly why this particular part of the brain goes haywire in people like me. Some have speculated that the cycle of the seasons and distance of the earth to the sun at certain times of the year have something to do with it. Unbelievable right! No, almost all of the accounts I have read go right in line with my own cycles, generally occurring in autumn or springtime. The really odd thing is that everyone generally gets them for about 1 to 2 months before they just mysteriously disappear as quickly as they came. Ugh... It makes me cringe just thinking about going to sleep as I write this. They will return So skipping ahead to my current cycle. I must say, something has been telling me they were coming. I have had little inklings of them for about a month or so while I have been ill with a sinus infection. I really hope it is just that this time, as I can just get some antibiotics to get rid of them quickly. However, the last two days I have had six really intense ones, mostly occurring at night after five and while I'm sleeping, worrying me because historically this is when it gets bad. I have decided that if I get an intense attack tonight that I will just go to the ER at a local hospital to get an MRI (something I ve never had done) and have them knock me out or do whatever the fuck they have to make the pain stop. This sucks... Just waiting for inevitable writhing pain in my head that comes while I shiver under cold water from the showerhead (this helps a little) in my bathroom. So now I'm definitely in the midst of a full blown cycle. It's been 2 weeks of sleep deprived days and nights. I have an appointment for an MRI tomorrow just to rule out all the really bad guys like tumors, aneurisms, and cancer. Hope it goes well. This time I have been more diligent than ever to get some answers and relief. I must say there has been a change in the behavior of them since it started. I believe it has a lot to due with watching closely not to come into contact with my usual triggers. Things like alcohol, smoke, scented candles, and a variety of foods that through my own research I have found to be linked to my daytime attacks. MSG is very bad! I have basically cut them out completely and sleep is my only enemy at this point. That's when I dance with devil. We do the tango, salsa for awhile, and finish off with amazing performances of the waltz into the wee hours of the morning every night like clockwork. Sorry to be so dramatic. Actually never have I been more accepting of my condition until now. I used to whimper or cry when the pain came on and that basically made things worse because of the extra stress and blood flow pulsing through my body. This is another thing I would say to newbie s accept the pain as energy that merely needs to flow through and out of you." It will subside and at least it's not a terminal illness. Look on the bright side to avoid depression. I told this to a friend and it made a lot of sense to her. Don't get me wrong I realize one cannot stay completely still through a pain level 10 attack, however by breathing evenly keeping your heart rate down and sort of meditating through it one suffers less. Now I will talk about what has worked and not worked for me as a treatment. The list of remedies I've tried is endless. There are really only a few antidotes I would swear by. The most useful tool for me has been Oxygen therapy. I recommended to my doctor we try it, and while it isn't instantaneous it greatly reduces the duration of an attack. The best part about O2 is that it has no side effects as with other treatments. For instance I tried Imetrex for the first time last week and it felt as if someone was chocking me to death. It really freaked me out and seemed worse than the pain from my headache. Since then I stay away from chemicals. Although I do take an Aleve with the O2 for extra quick results. The gel caps seem to get in the bloodstream faster too. Other than that I will sometimes take a cold shower. This sort of helps, I think mostly because it takes the pain and diverts it from the inside of my skull to the outside momentarily. Fun huh? Right now I'm in somewhat of a quandary with my wife at the moment. She is a very strong and loving person but unfortunately for me lacks the compassion and understanding one needs during a cycle. It's like I mentioned before and reading through other accounts is very common. It puts a huge burden on the significant other of a clusterhead. So it's no wonder why people get divorced over this condition. What a joke, getting berated for having a medical condition one has no power over. It's not like I'm asking her to have the headaches for me. I simply need to be free of stress while I deal with them. I truly have deep compassion for all those out there who suffer. My heart goes out to you. Stay strong, and if you already have a high tension personality I recommend something like Buddhism or yoga therapy to try and relax yourself and truly accept what we are all going to be dealing with the rest of our lives.
Maurice Bressack <momoney127@hotmail.com>
Seattle, WA USA

Hi, I do not know what to do! Please Help!!! I have gone to 6 doctors, had an MRI, Neurologist, opthamologist, primary. I have tried several medicines, cold showers, and I am wanting to die! I'm in school, and these doctors just act like I am crazy and have typical "migraines" but this is terrible. Is it normal to have eye pain, my eyelid gets droopy, feelings drunk, irritable, forgetful, severe depression? Can someone please help get this to go away, I have suffered for 2 months now, and have finals this week.
Hailey <haileyharris87@gmail.com>
Birmingham, al USA

I've suffered with CH for all of my adult life, over 35 years now and have tried every known medication there is. I've used the O2 both at home and at work and have found it only worked a percentage of the time. The only true relief i really found were the Imitrex injections, however I've also suffered from the side effects affiliated with them and am no longer a candidate for their use. I've also tried many natural remedies for headache treatment with no avail. I now have resided myself to simple suffer thru them and not so patiently wait for this cycle to end. If not for the support of my family and my one friend who tries her best to understand this torture I'm enduring I believe I would literally go insane. To all of u who support this site and each other I commend you.
Larre <larre56@yahoo.com>
Tampa, Fl USA

Here I sit another early morning after taking my Imitrex injection. I have suffered from CH attacks since 2001 and my cycles typically last 10 days, twice a year. This cycle seems to be different and I find myself going on the 4th week with a few days break between attacks now. Seems like the Relpax I used to take for CH doesn't work any longer. I've tried several drugs and O2 therapy over the years. Guess it is time to find another expert doctor to help me diagnose a new treatment plan. I'm glad I found this site because I've read some interesting tips from others tackling the beast. It is hard to explain this medical condition to people who do not suffer from intense headaches. Good luck to you all. You are in my prayers.
Chad Bruce
Colorado Springs, CO USA

Hello to all... my name is Lawrence...a clusterheadache veteran, I've posted on this guestbook before...it is now November 2010, my last entry here was in August of 2009, which was my last cycle. I'm 32 years old now, been having these things since I was 11 years old. I want to share some tips and methods for coping with this crap. I kept a headache journal during my last cycle, and I've studied this monster...not everything works for everyone, but hopefully some of you guys can take some of my tips to help you get thru this thing.... I get these things for two months, every year, faithfully...usually around the autumn. First tip... Stockpile all medication in your "off season" or "remission period". When your clusters are gone, and you know they might come back....for every month....get imitrex injections, or sumatriptan succinate injections....the generic imitrex....make it a monthly bill to get your prescription of this refilled every month...put it in a safe place...stockpile some form of triptan as best you can, and when the clusters start to arrive, use your OLDEST stuff first. Go to a neurologist, once or twice a year...have him prescribe some oxygen for you in your home. As soon as you start to feel the clusters coming back, make an appointment with him. Get the oxygen. Use the oxygen to abort the headaches at home, and take the imitrex injections with you when you leave home. Try to only use the injections when you are away from home, away from your oxygen...like when you're at work. Triptan injections, oxygen. Clusters usually like to come in the morning....drink strong coffee when you first feel that dull boring "shadow" pain that lets you know its coming. Drink 2 cups of strong coffee. Breathe more thru your mouth than your nose when you feel it coming...less nasal activity and less sinus activity has helped me to ease some of the oncoming pain. When you feel the pain coming, try rubbing or massaging on your face, and your neck, on the affected side...rub the side of your nose, and your neck, under your ear...but dont rub THE TEMPLE, or the top part of your head where it HURTS! Don't rub the top corner of your head where it hurts because that will intensify the pain. I've actually "rubbed" a few of the oncoming clusters away by putting some slight pressure rubbing on the same nerve that goes down the side of the face into our neck... Theres a pill which has worked for me to abort some clusters, its called Zyprexa. 10 mg taken at the onset has aborted some clusters, and it has turned some would-be MONSTERS into tolerable nuisance headaches.... Drink caffeine. In the morning or when you first wake up. Drink pop, or soda. If you feel a cluster coming on at work, drink some Red Bull. Chug it. At home....use your oxygen....drink caffeine, but stop drinking caffeine drinks at least 3 hours before bed. 2 hours before bedtime, take some Melatonin..... if you're in a cluster cycle, Melatonin is over-the-counter stuff you can get at a pharmacy like Walgreens. Clusters like to come when you fall asleep, i recommend you sleep half-sitting, or sleep with the tv or radio on real low so you can doze and sleep without ever fully entering the REM phase of sleep which clusters like to come. Depending on your sleep preference, take 6-12 mg of melatonin 2 hours before bed...if you want to sleep thru a cluster take the melatonin and sleep breathing thru your mouth and dont lay on the affected side, the cluster-side of your head. If a cluster wakes you...get on the oxygen. Remain calm and dont panic. Don't EVER panic during a cluster attack...just makes it worse....if you feel a cluster coming and you have no shots, no oxygen, no nothing--exercise in place, or take a cold shower, take your mind away from it as much as possible...go for a walk outside. Drink water regularly..... Pills ive taken include topomax, verapamil, depakote, methylprednisone, etc, blah, blah. Verapamil works best for me as a preventative. Prednisone worked well for a week of relief. Its a temporary tapered steroid. If you out in public, get yourself a pair of sunglasses to take with you so strangers wont stare at your BLOODSHOT RED EYE that accompanies the ugly cluster. I hope some of my tips can help someone out there. Pain free wished to all. Lawrence
Lawrence Latiker <TheL927@comcast.net>
Merrillville, IN USA

I'm the patient wife of a cluster headache sufferer. He was diagnosed 4 years ago and his cycles usually last 4-6 months with at least 2-3 headaches a day. He uses imitrex injections and oxygen but still suffers greatly. We haven't explored any of the "preventative" drugs e.g. verap, lithium, etc. yet but I'm finding out all about them because of this FANTASTIC website. I never imagined that there are so many sufferers out there. I definately will be checking back in the future.
Susan Mayer <mayerduvall@msn.com>
Portland, OR USA

im lost but feeling my way through....i have been suffering ch for about 5 years now ...and only got diagnosed 2 weeks ago.at least i know what it is now (kind of) and that im not by myself . this years cycle has been going on for 5 to 6 weeks no sign of letting up but i can rest in the knowledge next year i will be timing the period duration.it reay is shocking to know all there discovories science etc etc and no 1 seems to know anything about ch...yesterday i was living to die today i am dying to live ...i take sumatrptan when i get a shadow and 100% oxy when i have full blown attack @ the hospital my advice is if the pains unbearable get to the hospital oh yeah a big thank you to those who make real sites like this possible we are all in your debt ...much love ..adam
ADAM ANDERSON <adamdanderson@hotmail.co.uk>
MANCHESTER, UK

I have had cluster pains for far too long now and have been chronic for the past 8 years. As many of you in the beginng I went from MD to MD getting no results only lack of information from them or a pill for a simple head pain. I was put on and have tryed just about every medication out there (pills)and have had an over dose that floored me plus intoxication due to poor MD knowladge. I am now ever so lucky as some years ago I found a great MD in a wonderfull hospital with great staff and a "Pain Center". I have been in hospital twice for cortizone treatment the first time 6 months with no pain and the second time it made it much worse. My clusters have now gone over to the nerve path along my upper teeth, nostral and roof of my mouth so I can nearly not take the ever so life saving O2 any more. After the last few weeks where I was screaming in pain I was given botox injections along the nerve path (in the muscles) and 96hs post the injections 60% of the pain went away. I will need booster shots every 3 months. I also take 50mg of opiode or morphine pills every 8 or 12 hours when things get bad (under MD control)and as I see with others it helps as no other medication does. Last but not least and after all the medication I have tryed I AM going back to Topamax (yes even after all the side effects such as weight loss - morning short span mem loss I had) I take 25mg 3 times a day. Topamax is the only thing that has worked for me even though I dislike it I have to admit it works for me. Now I go to bed at night mith no fear and get some sleep and can keep a some what family life again and am not screaming. But the beast seems to work its way around medications in time so I shall continue seeking... Good luck and God bless.
Odin

This is a welcomed site to finally find. I have been a cluster sufferer for over 10 yrs. When I had the first one I thought I was going to die. The first thought was I was having an anyurism (spelling). My clusters typically last between 4-8 weeks and go into remission for 1-2 yrs. I have had 6 broken bones in my lifetime, and I would gladly take that pain over this tortuous hell in my head. My doctor thought I was a nut, and over exagerating the pain level. When I found the diagnosis on my own and gave the info to him he was stunned. The last cluster he put me on Verapamil (high blood pressure med). since I don't have blood pressure issues I am only supposed to take it during the cycle. It seemed to work at first. It could be the cluster was on the way out though as the 8th week was approaching. Hasn't worked this time at all. The only thing that stops the pain is a large dose of Sudafed. I found this worked early on, as I thought it was a severe sinus infection. It still works for me, although the Maxalt that was given to me a few years back by a sinus specialist works the best. Very expensive though, even with my insurance co-pay.
Ben Clay <blcperform@cox.net>
Oceanside, Ca USA

I have suffered from CH for 5 yaers, glad to finally find a site on the web that addresses this issue. Everyone thought I was overexagerating the pain, now I can prove that it exists!!
Ted <tj_voelkerding@yahoo.com>
Franklin, oh USA

Thank you!
Jenny <jjk134@aol.com>
butler, pa USA

I hate that this site even exists because no one should suffer like we do!! I'm only in my third episode, 2nd since I've figured out what they are. Which I did on my own and with the help of my uncle who has them cause doctors suck!! There should be a specialty field just for CHs cause even some neurologists don't understand them and it takes years to finally get to a Dr. that does. Maybe if we all just keep pushing, they will do more research on them. I would be a lab rat if it helped us. HA HA, my code i gotta type next is "curdat" but there ain't no "cure for dat"!! God bless you all for being so tough cause it takes alot more than people believe to live with these things!!
Ashley Housewright <ashleyhousewright@ymail.com>
Church Hill, TN USA

Hi. I'm in the middle of a cluster that typically will last 2 months. Luckily remission has been around 3 years. Been dealing w/CH for almost 30 years. Imitrex SQ works best for me but is so darn hard to get!
Joe Corey <svcalcutta@hotmail.com>
St Petersburg, FL USA

Happy to know that this web site exist. No one in my family or close friends uderstands this conditio.
tina <vuntina2002@yahoo.com>
macon, ga USA

Today I have found your site. It is amazing to read these stories. Where I live I am the only one I know with cluster headaches. It gets lonely and desperate at times. I am alergic to many medicines so, my options are minimal. But, about ten years ago I went into a chinese shop in town looking for a cough syrup and when I was going to pay I held my head with my hands from a shot of awful pain I got at that moment. The lady at the register, who knew me, took out a tin can like a tube, inside there was a small green glass bottle with orange cap (you can find it at this web site: http://www.ostenzenherbs.com/imada-p-228.html). She opened it and told me to put all over the area that hurt and then to inhale it through each nostril in my nose and I did. And it helped!!!!!!!!! Helped me at least. I have been using it since. I even put it on a qtip and put it inside my ear. It's not a cure but in my case where I cannot take most of the medicines available, it's a life saver. I am no doctor but I use it frequently.
Adela Maloff <adelamaloff@hotmail.com>
Puerto Cortes, Queensland HONDURAS

A New Treatment to Break (End) The Cycle of Cluster Headache Attacks Dear Cluster Headache Sufferers, Hallo, I am Thomas, 40, I have something that I want to share to you and maybe it is a good news for you too : Long time ago when I was still in senior high schoolI, I had got attacked by this extreme and the most suffering pain for the first time and after many days of the most sorrow and unforgettable painful in my life and many hopeless and struggling days, a miracle happened to me and I thought maybe God had given to me a way to defeat this disease. I have never used any medicine at all like you guys, but since that time until now I am always be able to defeat the attacks from this disease. I have been free from the Cluster Headache for over 20 years. I do hope what I share and the guidances / instructions that I write may help you a lot. Wish you all the best, I hope the treatment will work for you too. All of my experiences and the way how to be free from cluster headache attack are written openly in my website so that everyone from all over the world can be easily accessing it wherever they are. Please visit my website at : http://ch-free.webs.com/ If you have any question about me or this treatment please don't hesitate to send me an email or contact me, I 'll be glad to explain it all to you. What I write in the website is really my experiences although it seems a very amazing story to you. If you have tried this treatment, please let me know does it work effectively for you or not, so please send me email to: cluster_headache_free@yahoo.com Love you all, Thomas Timothy thomas.ch2009@yahoo.co.id
Thomas Timothy <thomas.ch2009@yahoo.co.id>
Palembang, South Sumatera Indonesia

So glad I found this website, my new best friend. Such a relief to know I am not alone, that others know what I am going through. Try to explain to family and friends what is happening to me and they don't understand, try to hide it from my daughter so it doesn't scare her. I am 42 and am in year 4 now, they hit every spring and fall, lasting 3-5 weeks each, beastly visits every 2 hours at night. Afraid to fall asleep, knowing I will be in severe pain very soon. Missed a week of work due to lack of sleep and dizziness from the drugs. Read the "Water x3" info, started doing that, and lo-an-behold, the beast is getting weaker and weaker. My cycle is coming to an end, I just know it! At least I hope so. Thanks for everyone's posts, knowing I am not alone is a great comfort. Wish I could hug all of you.
kelly <kashantz@rogers.com>
Waterloo, ON Canada

My Husband suffers from CH ..we have tried lots of different things ..he has gone to a neurologist , he even got his nose vessels carterized nothing seems to b working ..we have bought several medications doc even had him try 1 for epilepsy it made it worse... and no one seems to believe that he in such excruciating pain they keep saying they dnt c anything ..any 1 have any ideas ..Help ..i feel i am going through the headache with him some nights cus he has even threatned to hurt himself because of these Ha"s I just can't leave him all alone... i am open to any Suggestions!
Michelle Dennett <michellednntt@gmail.ccom>
Hereford, Tx USA

Hi all! after my last cluster about 30 days ago, my eye has stayed red and appears smaller then my non cluster eye. i have had constant congestion in my cluster nostril and have very minor pain constantly behind my cluster eye. this has never occured to me before in my 30 years of clusters. has anyone else experienced this? any info would be welcome thank you
mitch lutzke <dispatch74@yahoo.com>
portland, me USA

What a blessing to find this site~! I have suffered from CH's for 15 years. When my wife and I read the first description of the 100 year old man holding on the the hallway..my wife found relief that I was not going crazy. Misery does love company~! I have found that O2, Water, Ice, Cold Air, Prednisone, MaxAlt are effective treatments for me. I love all the postings... Dr. B
Kendall Brune <kbrune2339@gmail.com>
Chesterfield, MO USA

I'm a lucky CH sufferer - lucky because my doc diagnosed them very quickly, and immediately prescribed Imigran, which works a treat. I'm still in my first cycle (assuming that I have cycles), but coping thanks to the meds. I can't imagine how difficult it must be to have these headaches for prolonged periods without accurate diagnosis. My doc was well-informed about the different types of headache - surely, if others were as well briefed, there would be far fewer people spending years undiagnosed?
Jay <jay@redshoes.co.uk>
Selby, NY UK

Hello, my name is Chrissy Giles and I suffer CH. I was dx with CH sometime in the mid 90 s. I think I was a junior in HS. The last time I had CH was back in 2006. Then I was so lucky to begin having the great nightmares back a couple of weeks ago. It is an every night event. It started out at 4 am and now I am being woke up at 11 pm, 4 pm and then again at 6am, right before my alarm goes off. I get up and get my kids ready for school and then BAM, here comes another one around 8. My eye feels like it is going to pop out of the socket. I become this instant baby and just start crying, it doesn t even have to be a full blown Cluster yet and I am already crying. I know what comes next. I am scared because I know it is starting to affect my work and my life. I thought I could control it again and then I can t. I also feel that everyone around me thinks I am insane because they have no clue. I try to hide the way I am feeling with pain; the next thing they know is that I am ok and I am back to my happy self. I don t think they realize of how fast it comes on and then can leave. I am sucking on oxygen like I will never see it again. I am doing 2 imitrex shots a day. I take verpamil 4x daily. I see the neurologist again tomorrow and I can t wait to see what he says. The sad thing is, is that I don t remember what meds work for me. It has been too long and I am not sure if the meds really help or by the time I think the meds work the headaches are done. Sorry I am rambling on but I love that I found this website and I hope it helps to see how other people treat their CH. Thanks for listening.
Chrissy Giles <chrissy.giles@yahoo.com>
Lebanon, IN USA

Hi. Today is day 2 of week 6 for me. I self diagnosed myself with CH about 5 years ago. My cousin saw me have an episode and confided in me that he suffers from the same thing, but he put a name to it for me CLUSTER HEADACHES. He was diagnosed by a doctor. After hearing the term and listening to his stories, I research and researched and researched. I've been to the doctor since and they give me the same 'ole, "it's a headache", Freakin Quacks! No one will ever know the power of a CH, unless they are one of us.....Mine are episodic, happening about once every 2 years. I'm here to post that YOU ARE OK!, YOU ARE NOT CRAZY! and YOU WILL GET THROUGH THIS! I'm saying this because last week, I thought I was gone. The beast wouldn't leave me alone. For the entire cycle, he would wake me every 1 1/2 hours to let me know that he still owned me. I fought and fought, but I never won. Nothing works for me. I tried water treatments, OTC meds, O2 from the local Fire Dept, Vitamins, etc., but nothing works. My Will was about broken, my body had just about given up. But with the support on the site, and support of loved ones who try to understand and help, I think I made it! I say "Think" because I know that bastard could be right back tonight. But I am glad to post that I haven't had an episode since Saturday morning! That's right, 5 week total cycle with weeks 3-5 being the worst, and 2-4 episodes a day, consistantly. But to not have them for 2 nights is a Godsend. And that fits the bill, they leave just as fast as the come. So my friends, keep the faith and know that your pain will end. Hopefully forever! Much Love, Mike
Michael <mikeec74@msn.com>
Rio Rancho, nm USA

Hi, I'm so excited to know that I'm not alone with this. It's amazing to me that so many of us suffer, yet there is no reason why, and no way of fixing it. I've been suffering with clusters for 3 years now,and I'm chronic. I can count on both hands pain free days. The last 3 months I've been waking up with them too. My pocket book can't afford dr.'s or meds. So what's a girl to do? Thanks for being here, I'm sure we'll be talking alot. Diane Idaho Falls ID
Diane Tuttle <tuttlediane49@yahoo.com>
idaho falls, ID USA

Relief after 20 years!!!! Imigran 0.5 ml cartridge syringe. I have suffered as bad as any post on this site and have gone through trial after trial of variant medicines. This injection gives me instant relief were before i would be in tears for hours. I cannot underestate how this has changed my life and those close to me, especialy my partner who on many occassions has driven me to A&;E at 2/3 in the morning for pain relief. Only issue you can inject only twice in 24hrs, tough when sometimes i have 3/6 attacks a day. If anyone wishes to contact me direct for more detail then please do. You have got to ask your doctor for this, they will be reluctant due to the cost but push past this. billy.hughes@thistle.com
Billy Hughes <billy.hughes@thistle.co.uk>
London, UK

I have been a CH sufferer for 9 years now, Im 46, and having my season as I speak. I have tried everything from from a to z, with no relief. I used a drug last year , and am using it now called RELPAX. Its 1 pill every 12 hours, tho Im 6ft 6 and 250lbs I think I exceed the normal weight used for this drug and I have to take about every 10 hours. This med. is about 27 dollars a pill and I dont have insurance. They work well during the day but dont seem to help much at night. I borrowed a friends O2 tank and reg. After several trips to the local fire dept, requesting O2. I decided to bring the borrowed tank and asked if I could refill it. They OK'ed it and Now on a daily basis, Im down there filling that tank and another I borrowed yet from the fire dept. Last night I was told to place the tube into my nose for O2 , put the reg dial on 1 and sleep like that. I awoke for the first time this morning with no clusters all night long. I had to tell someone, so called the Dr. this morning and asked he get me into a sleep clinic. Well you ask why??? Because it appears to me you brain must build up with CO2 (carbon Dioxide) and using the O2 removes this from the blood and brain and you get relief. Im figuring the clinic and proper regulate the amount needed safely to sleep thru the night. Im no Dr. but I feel trial and error counts in my account. Just wanted to share my lil break thru.
sid tolen <thetolhouse@gmail.com>
jenkins, ky USA

It's been awhile i use to chat in Elaines chat room some might remember me. I had clusters for 20yrs non stop sometimes up to 5 aday (Not Pretty) i've been in 3 different hospitals in Mi.,and Il.,been on 57 different meds i think i finally have the right Dr. 30 miles from where i live in Wisconsin. I was and STILL am on Verapamil 240mgs. aday my new Dr. also put me on topamax 75 mgs. aday and litheum 600 mgs aday. I have NOT had a headache sence, and this was 3 yrs ago to this day today the ONLY med i'm on is Verapamil... I hope and PRAY this combo might help someone out it sure helped me out,now i can finally plan things to do these damn Clusters will NEVER run my life AGAIN!!!!!!
Jeff P. <cheesehead1720@yahoo.com>
Manitowoc, Wi USA

zomig - zomitriptan - the only thing that works for me 2.5mg or 5mg
Steve Bratby <stevebratby56@o2.co.uk>
Huddersfield, uk

For anyone doubtful re. the effectiveness of the botox: Have just had some injected into the eye area where the cluster headaches are bad and, as soon as the doctor injected it, I experienced excruciating CH pain....I'd say he hit the spot! He also injected under my eye at the top of the cheekbone. If you've tried everything else without success, what have you got to lose? It doesn't completely take away the pain but it certainly makes it more bearable as the pain is in the middle of the head and not the eye area.For me, anything is better than feeling as if your eye is being gouged out. I'd really like to hear from anyone out there who has had this treatment. By the way, doesn't it make you mad when people say "oh yes, I've had migraine too". As if there is any comparison!
lynette <mslynette@optusnet.com.au>
Australia

Have just started a cluster cycle...I have been on meloxicam ( an anti inflammatory drug) for knee pain and the dreaded headaches are not as severe this time around. Could I have stumbled on an answer? Worth a try! Just in case I have spoken too soon, I'm off for some botox today just in case. Yes, botox lessens the pain in the eye area for me. It doesn't completely ease the pain but it helps.
lynette
australia

Hi, I suffer from cluster headache for 3 years now and my attack last for 2-3 months per cycle. I just stumbled a link that really helped me a lot to ease my pain. It worked for and I am really thankful for this person so I decided to post it here and maybe it can help you too. here is the link http://www.psychresearch.com/headache1.html at first i was skeptical but there is no harm in trying since I know that we will try anything just to stop the pain of suffering this demon inside our head. This is my way of thanking the person who help me. And please give me feedback if it helped you too. my email is third.ocay@gmail.com
Jon <third.ocay@gmail.com>
manila, philippines

I have CURED myself of Chronic Cluster Headaches after reading an article from a Harvard doctor. It is no longer online for some odd reason, but it read "Cluster Headache Cure: You may be hyper/hypoglycemic". After 20 years of suffering daily, and thousands of $$$ on doctors, tests, and drugs that never worked, I reduced my sugar intake and beat the demon. I have not had 1 attack for over 6 years now. It did take a little time for my body to adjust (I think a couple weeks or so), but they have never returned, as I keep the same "diet" out of shear fear of them returning. All I really did was switch to diet soda and reduce my dessert intake to just about none. You see, I like to drink beer and eat pasta which also converts into sugars, so I didn't realize just how much sugar I was taking in. I can still drink beer and eat pasta, as long as I don't eat any sweets on the same day. Sometimes I can tell that I'm pushing my limits, because I get the shadowing back for a minute, but it always just fades away quickly, never turning into an attack. If I want some sweets, then I don't drink any beer on that day. How easy is that, compared to all of the doctors who were just reaching for the answers, continuing to have me think they knew the answers, but never did. Please give this a try if you can't stand the pain anymore. Thanks For Hearing Me Out. Al K.
Al Kumick <arkumick@aol.com>
Treasure Island, FL USA

After fighting these headaches chronicly for 4 years, going to numerous Drs., Finally diagnosed by the Cleveland Clinic. I have tried all the various drugs (Topamax being the worse!)with limited or temporary relieve. CC was the ONLY one that recomended the oxygen therapy...and WOW! has it worked. I can't believe after 4 yrs of chronic CH I finally have some relief!
Michael Honas <mhonas@aol.com>
Cape Coral, FL USA

I am new to ths website too. It fees great to kow others are gooing throuh te same issues such as dctors not knowing wat they are in th E.R. when you really need it. And yes, they aresuicidal headaches. I keep a constant irritating headaches, but typcally have attacks every two years in the months of June through August. I take verapamil also. While in remission, I have anxiety attacks just thnking about the posibility of one coming. Durng my attacks season, I am at theE.R. at least 2-3 x a day.
Bill Wampler <grilldad2@yahoo.com>
hiladelphia, TN. USA

I've known the demon too well for 20 years now. Episodic. Last cluster was last summer. Been pain free since this time last year, but starting to get phantoms (as I just learned they're called). I haven't done much research online since finding out the O2 secret. Don't know what others' experiences are, but for me, the effectiveness of O2 starts to wane after a while. Taking 100mg Imitrex pills now to knock out the phantoms and hopefully prevent onset of a new cluster, that is cycle. I wish everyone on here the best. For those of you in a cycle now, get some Oxygen, and or some Imitrex, and stay away from Alcohol, cigs, cheese, preserved meats, etc., and HANG ON. I fear another one starting. Hoped I'd have a year or two free. I just started a new job. If these things grow to their usual extent, I can kiss that goodbye. God Bless you all. -Craig
Craig <Catfishcounts@aol.com>
Roanoke, VA USA

I've had clusters since I was 10. This cycle has lasted around 2 mos and had been by far the worst. I really thought I was going completely psychotic with all of the feelings, the actions and the qualities of this round of "headaches". I am actually relieved that I am not alone in all of this and am happy about it even though this has been quite a devestating hit. I pray for all of you.
Kathleen Deen <kdeen0201@yahoo.com>
Cleburne, TX USA

Hi all :) This is a great site. I've been a sufferer now for more than 20 years, with episodes occuring ever 18 months or so and lasting for 3-4 weeks, so I suppose I am luckier than many people, though now, in the middle of an episode, I'm not really feeling it. I too, have been a lab rat and have given up on the host of drugs that my doctor has suggested. I'm surviving on Imaagran nasal spray at the momnent but they are expensive over here in Aust ($24 for two sprays) and I'm chewing through 4 per day, more sometimes. This exceeds the rec dose, but what else can I do? Had one doctor that kept trying to give me endone (morph) in massive doses. Funny how so many have little idea of treatments for CH 's. Anyway, I'm going to try accupuncture in a couple of days, maybe it will work, maybe it won't....what have I got to lose except a few more bucks? Thanks for all the information on this site, especially the different treatments that people have tried. Sean, Australa
sean lavery <laverysean@hotmail.com>
perth, WA Australia

Ok, rather than talk about all the same symtoms that i've read on this page, I would rather talk about how I beat Clusters. "Midrin" strong medicine but it works. Sounds like a comercial. I have had epesodic headaches, Spring and Fall always for 17 years. My friend gave me a Midrin Tablet that he got from being a vietnam vet. This medicine stopped my full blown, peaking, tweaking, etc headache in it's tracks. Not once, all the time. Google it. It's says it's for Migrains and Tension headaches so don't think that, that's what I had. I had Cluster's Headache's. I've been thru every treatment on this page. "If I had a Cluster Headache Today, I would run to the doctor and demand some Midrin or Duradrin....John Giordano cuzz662@comcast.net
John Giordano <cuzz662@comcast.net>
Mays Landing, NJ USA

I am not a doctor, but having run a regular cycle of cluster headaches, twice a year for 16 years, the doctors are running out of ideas. none of the normal treatments worked for me. This is what I tried. I would highly recommend doing your homework before attempting off label drug use. The muscle relaxers help the most, but you sleep for 18 hours and are dragging butt for the 6 hours you're awake. It is impossible to concentrate when your always in pain. And it is impossible to work when you re asleep! Now, I read, everything I can find. And if I could find some mushrooms or LSD I would have tried it by now. But, at a certain point, that's all the doctors are doing. Trying different things. So, this is what I did, I understand it the hypothalamus of the brain that some how causes this horrible pain. I understand the strongest narcotics have little to no effect. And I know as much about this condition as most doctors. My doctor really wants to help me, but there s not much that we haven't tried. I am in the process of getting together the most accurate list of medications. I should have done this years ago. Because of how tired the muscle relaxers make me, I talked my doctor into writing me a script for Provigil, a stimulant that the Air Force and astronauts have been using for years. Now, yes, I do want to be able to stay awake during the day, but when I'm in pain, there is really no use. So, after my 4 am dance with the devil, I slept for most of the next day, got up around 11 pm, and took 400mg, feeling a little tired, I took 200mg the next afternoon, and another 200mg about 11 pm. I stayed awake about 4 days, eating maybe 600mg a day, with NO headaches. Yes, the muscles were tight, and I didn't dare take the relaxers. I still had a extreme reaction to light. On the 5th day, not sure of the damage this drug does, but understanding rem sleep is a must, I took a muscle relaxer and had a good nights sleep. I have been getting used to the constant tightness in my muscles, and the following day, I took a nap, and woke up with a mean, mean migraine, but the 4 am cluster headaches have stopped. I still have been getting migraines, no less, no more. I have not taken the provigil since. Tomorrow is Monday, I plan to resume one a day like they were prescribed with a muscle relaxer. My thought is, if I m going to be a lab rat, I am going to control the experiment. This drug works directly on the part of the brain causing the cluster headache. Some of the articles I read said you could stay wake as long as 40 hours with no ill effects. I really plan to research the side effects of missing rem sleep. I am sure it can t be good for you, but at the same time I have to find a balance. My only wish is that I would have tried this at the beginning of the cycle instead of the end. It mat have just been ending anyway. With the migraines so close in nature to the clusters it's hard to tell. But the migraines don't wake me or come at an exact time. I am not sure I want to share this with my local doctor, I don't want him to have the impression I am carrying out my own experiments. But I do want try this at the beginning of my next cycle. This drug has been tested and used by the military for years. It does not make you feel speedy, and it is said to improve your focus. modafinil is the actual drugs name. And, there are places online you can get 7 day samples and reduced copays. Again, I am not saying you should try it, but at a certain point, I will try anything since nothing has worked. Good Luck.
aching head <falseaddress@yahoo.com>
anytown, MN USA

It is cool to now i'm not alone.No one I now has a clue about how bad a cluster headach really is,even my family . How does one deal with and make others understand how bad it is.
Randy Castle <ran-subs4x4@live.com>
Great Cacapon, wv USA

Just happy to have found this site!!!!!!!!
Don Rogers <don-kellyRMH@hotmail.com>
Rocky Mountain House, AB Canada

Hi, Thanks to all for the great information in this site. Being new to cluster headaches,I live in Michagan in the Detroit area and I wanted to know where I can go to buy the Oxygen tank that my doctor has prescribed. Thanks for any suggestions.
Jeannie <jeanniewonders@gmail.com>
Bloomfield Hills, MI USA

I'm glad I found this site. I thought my doctor was crazy and I was losing my mind.I have been having cluster headaches for about 3 years. But I was just diagnosed about 6 months ago. I have been reading a lot of the comments here and now I know I am not losing my mind. I have 2 young children and my husband is a great help. I just haven't found the right meds that work for me yet. I have a good doctor though, he is trying hard to help me.
Erin B <ebrewer@cableone.net>
Biloxi, MS USA

i have had cluster headaches for 6 years now. it wasnt until this current episode that i realized the name for them. i thought i was being a baby but after much research and reading others posts i realize im not crazy and not alone. although i wish i were alone because i wish this pain on noone. i truly feel sorry for anyone that suffers from this. i have read so many post and can relate with just about every one. nobody understands what i have been through i am single and try to hide it from everyone i know. it started 6 years ago. i would get them for a week or two everyday but not to bad as tthe years go by the intensity and length of time i get them have increased dramatically to the point where i dont know how im gonna get through this. i have never gone to a doctor i just get myself through it. this is becoming difficult. this curent episode has lasted 5 weeks so far. 1-4 attacks a day. im not scared there coming because i know they are. now that i know what it is. i may go to the doctor. but is it worth it will any thing make it better? anyone who suffers from cluster headaches that would like to talk feel free to contact me at mikenyms@yahoo.com i would love to have a friend who would understand.
mike <mikenyms@yahoo.com>
syracuse, ny USA

I am 62 years old and have experienced cluster headaches for 10 years now. They always strike in July and/or August and last a month or two with attacks coming 3 or 4 times per day, lasting about 2 hours per whack. Last year was very unique for me, in that for the first time the headaches struck the right side of my head rather than the left side, which had been the case in all other years. I mention this because of the lasting effect and damage which this seemingly simple change in sides appears to have caused. When the headaches ceased last year my central nervous system began a slow and steady decline from which I have not fully recovered. I know I experienced brain damage on July 14,2009 when I ended up in the ER with a headache which could not be knocked out for some 8 hours. Since that day, my life has not been the same and I fear it never will. The pain of cluster headaches has always been something I believed I could handle, in part because I know they will only last a few hours and I will get some down time to brace and prepare for the next onslaught. I have found the greatest problem for me with cluster headaches has been the toll they have taken on my self esteem. When the headaches hit I feel reduced to nothing more than a vessel of pain and my identity seems to get stripped away a little more each year. The headaches have become an embarrassment to me and I do not want to be seen by anyone when having an episode. These awful things have plunged me into a very deep state of isolation from which I am not comfortable emerging. The medications which have been prescribed seem useless with prevention, but do supply reief within an hour or two of onset. I have tried the entire gamut of prescription medications and treatments with success limited to aleviation after an hour or more. Sometimes I think I may have let these things go on for too long before I got very serious with them. I have a strong aversion to prescription medications unless absolutely required. Simply stated, I do not trust corporate pharmaceuticals to produce much to serve my best interests. Sometimes it is difficult to understand that others suffer from this same affliction. It taxes my imagination to think others are able to survive this horrible ailment. I wish I could offer insight or solutions to other people in my same shoes, but alas, I cannot. I suppose the only saving grace I have found is in the respite between headaches and more importantly, episodes. I hope all who read this posting will know you have my sympathies. I know what you are going through and I will hope you find whatever you need to persevere. At least, for most, these are not an ever present agony. I wish you all the best of fortune in dealing with the headaches and will hope they can someday come to an end. All the best, John
john <jjbf47@aol.com>
orinda, ca USA

Ok, about 4 years ago my doc suggested I may have cluster headaches. I disagreed with him because I had already looked up info on headaches and had ruled it out since mine had been bearable. My main complaint was that I seemed to have a recurring headache. The pain is always on one side (kind of above and behind my left eye causing my eye to water and feel pressured), and it is every day for about a month and a half straight. It comes and goes thru the day and night. It wasnt severe enough to really need to take anything for it, just more of a nuisance really and I wanted to make sure nothing serious was going on. I also noticed that it would religiously begin around March and end around April. Well, I thought maybe I had lucked out this year since March and April came and went without a single headache. Well now, here I am in August and for the last two weeks I have had this headache every day. Its in the same location, but now it seems as though the pain is a little more intense. Im not much on taking meds unless I absolutely need them, but I drink extra coffee and it possibly will help. Sure enough though, later on thru the day, it comes back. Its like I cant make up my mind whether I have a headache or not. So I know that cluster headaches are severe and incapacitating. What I want to know is: In the very beginning of your situations, did y'all (yes, Im from Texas) ease into clusters with maybe a couple of years of only shadows, or did just all of a sudden WHAM--you were hit full force with excruciating pain?
Amy <amyamax@yahoo.com>
TX USA

Hello all. I just found this website. I have been having these headaches for about 11years. I had no clue there were as many people out there with this same type of headache as me. I am just starting imitrex injections, and they are wonderful!
jim <spikefireman@yahoo.com>
aurora , co USA

Hey everyone,Can anyone give me some info on Sumavel ? Does it work as well as Imitrex ? For those who are unfamiliar with sumavel, its basically imitrex (sumitriptan)in a needleless injection. My doc says its painless, but Ive heard just the opposite from others. I just got 2 samples today and i havnt used any as of yet, BECAUSE ITS NOT 2 A.M. YET!
Bill Meier <Meierx2@fuse.net>
Independence, Ky USA

Just wanted to say hey to all you guys ! I Have suffered from clusters for about 22 years now and have used Imitrex since it inception about 10 yrs ago. My situation was always difficult because no one can even begin to imagine the intense pain, and also because of my size. (6'6'' 260 ). Lately though, iam starting to feel like no one at all cares. My insurance won't cover the amount of injections I need, and no one seems to give a rats butt if I suffer or not. Is there anyone out there with this same problem ? In 2008 my insurance covered 32 shots for 30 days.I was able to stockpile some that year. 2009 comes along and the suddenly only want to cover 6 shots for 23 days. I use 6 shots in 2-3 days which means iam left without medication for 20+ DAYS. I've now contacted my states dept of insurance to see if they can help, but it will do me no good for the bout i'am in right now. Please help if you can ! It's kinda bitter-sweet knowing you guys are out there. I feel horrible that you suffer, But in the same breath I'am happy I found you ! Bill
Bill Meier <Meierx2@fuse.net>
Independence, Ky USA

hello all! the headaches just got me again after a 2 1/2 year hiatus. depressing. but the wonderful imitrex injections are doing there job well. if only the insurance company would let me get enough for my cycle. they try and only give me 4 for a 30 day period. i try and tell them its cheaper then visits to the er for the same dang shot. i feel one sitting back of my eye right now. crapola! hopefully the cycle will be brief. good luck all
mitch lutzke <dispatch74@yahoo.com>
portland, me USA

im so glad to find this site.i had these things all my life.good to know im not alone
Eugene filby <eeugenefilby@aol.com>
brownsville, p.a. USA

I have been suffering with clusters since I was 16 and now I am 48 still suffering every 4 to 5 years they return..I am soooo glad to hear other people who have experienced what I have. At one point I thought I would never find anyone who understood these headaches.
Dorothy Craig <dorothy.craig@gmail.com>
BAltimore, MD USA

Hi everyone. I am a 59 year old male and have had Clusters since I was 20 years old. Usually 2 bouts a year that would last for 4 to 8 weeks. I went to doctors when I was younger for it but they could do nothing for me. As I grew older the frequency became less and less often with a full year between bouts. The last time was a full 5 years ago. I thought I had out grown them. They cam back 3 weeks ago. Coincidently a week after my colesteral medication was increased. I asked the doctor if there was anything new out there that could help and she gave me a presciption for Sumatriptan tablets. They have been a God send for me but at times I think they just delay the events. Glad I stumbled across this site and hope to get through it all.
Don Kelly <donkelly@mchsi.com>
Janesville, MN USA

my name is ron i have suffered with cluster headache for 10yrs .i have tried lots of medcation but nothing seems to work i am a chronic suffer so i know what it is like to be in constant pain all the time .
Ronald Darbyshire <ronald.darbyshire@ntlworld.com>
runcorn, england

I suppose I'm lucky because I've only had three bouts in 21 years, with only very mild symptoms inbetween which I thought were possibly due to some other sinister complaint. During my current one (first for sixteen years) I was actually diagnosed and prescribed injections to 'bail out' if necessary (Imigran). I've stopped my (mild) drinking and would now love to be able to get out and exercise. The attacks are getting milder and less frequent so hopefully I'll be over it in a bit. But I'm getting fed up with having to go to work tired after a couple of sessions per the night walking about in the kitchen trying to blow my nose Cluster headaches is far to innocuous a term! I think a neurologist mentioned this to me sixteen years ago but I just thought it meant 'He gets a lot of headaches'. They're not headaches; I've always described them as head pains when I've been to the doctor. Best wishes to you all.
Alan <alan_lord@tiscali.co.uk>
Shepperton, UK

Hi, im 20 and got diagnosed with cluster headaches today. I firstly thought i had a eye problem but no turns out my stabbing pain behind my eye and up my neck was CH. Im quite worried about my next attack and wondering why the doctor said there was no treatment apart from paracetamol when he could see the tears streaming down my face from the pain. Hollie x
Hollie <hollie3@hotmail.co.uk>
London, UK

Hello to all sufferes and supporters my name is kylie i am a supporter i have been for 2 years.My partner marc is the sufferer and i would give anything to stop the pain for him.I have never seen anyone in my life be in constant pain day and night.We have been through so many hard times with this demon on our shoulders.My partner has contemplated suicide ending his life so that he would be painfree.But can i say to all sufferes and supporters keep looking for a break and why i say a break because in my oppinion there is no cure because proffesional doctors,gps ect do not no enough about this beast.My partner has tried so many drugs tried so many natural remedies and list is endless but in the last year of us trying for a cure we have came across 2 very helpfull remedies botox is one marc gets 10 shots of botox into various places in his head which worked for a while maybe 9 months the beast came back but deffinetly not as strong and not as regular we then heard about oxygen which is half the amount of money compared to botox my partner has now gone from having 3 episodes a day to having 1 a week but still has his bad weeks the oxygen dosnt stop them coming but its stops the pain in 5 minutes when they come he also says that they are now at a 6 in pain levels not a 10 anymore.I pray for everyone out there to keep looking for something that works because life is great you just need to get rid of the demon or at least make him scarcse enough to live life. xxxxxx
Kylie Pittman <kylie.pittman@yahoo.com>
perth, wa australia

Hello everyone i'm new to the site and love it.I am a 34 year old male who has had clusters for 8 years now and like you all can't stand them!!!!!! I have tried almost everything to help with the terrible pain and cant find a steady med any sugg? Thanks again talk to you all soon
AJ Jackson <ajjackson3@att.net>
Jacksonville, fL USA

Hello everyone. 10 years going but just started cycle and last one was exactly two years ago. Back then, I was put on Prednisone and Verapamil. It took me out of the cycle within two days. This time around I got Pred. and Propanol? It was fine until I had to taper the meds down. I tell you what though, I also got sumavel shots (which I guess is taking place of imitrex shots because they are needleless) and they work for me. Within 5 min the CH disappears only to re-appear later in the night but still, a god send when you are going through one. My heart goes to everyone that deals with the demon.
Michael <Vegas5k@yahoo.com>
Sterling, VA USA

Hello Everyone, My name iss Kevin and I suffer from chronic cluster headaches. Yup, I get these lousy attacks just about everyday 365 days a year. I still can not comprehend how truely I'll-equipped doctors are in treating this disorder. I have found oxygen, high dose Lyrica and Avinza (delayed release morphine) to be most effective. I know that opiods do not do anything for the headaches , but I also get severe residual pain after the attacks that include body aches that this medication is a god send. If there are any chronic cluster headaches sufferers, that would like to say hello (not to many of us out there) please feel free to e-mail me. Best wishes to everyone out there in cluster land. Kevin
Kevin
Basking Ridge, NJ USA

I'm 53 and have had them almost every year since 1979. Current bout started 1st week of May. typically they last 2 months Never got more than one a day till now (8-10 per week now) always get one 1 hour after going to bed. They vary in severity but always last 45min.-1 hour. Imitrex Nasal works most times but only when taken upon 1st symptom. International Med Store online has the cheapest scripts. The pain is unbeleivable. Be smart and proactive about treatment. Kevin
Kevin Foster <kfoster5@tampabay.rr.com>
Pinellas Park, Fl USA

Hi everyone. It has been great finding this site, it makes me feel not so alone when I am scared to go to sleep. I got my first CH in the fall of 2006, my cycles last about two weeks with about 12 months of pain free days. This time it is getting worse, I am now getting an attack every 12 hours and it's almost the end of week three. I did have a short two day break but woke up last night to the pain, about two hours. My face hurt all day. It is nice to know that I am not out here alone, but after reading some of these posts I am heartbroken over some of the stories. I am now taking Varapamil and Lora-tabs. They seem to be ok I just have to take the Lora-tabs about an hour befor an attack. I wish all of you the best. Thanks for being their for me. Josh
Josh
LA USA

I just found this website after my fiance finished with yet another episode. He suffered with what I believe to be cluster headaches for 10 years before he met me. I have only had a week of dealing with this. My heart goes out to all of you fellow sufferers. The first time I saw him go through one (together 11 months; a month from our wedding) i about lost it. Luckily his mother was there at the time. She was able to guide me through the process that they have gotten used to. I'm scared to tell him I suspect clusters because he has already stated his fear of living with these the rest of his life. He has told me of the past thoughts of suicide just to end the pain. Imitrex injections seem to be the best thing for him, but he doesn't have insurance right now. I have been keeping a headache diary since they started and most of the time they occur about 7-9 am and about 9-11pm. he has had up to 4 in one day. he eats advil or naproxen like candy. he has some imitrex but he threw up the pill he took tonight. i don't know how to help him and i am scared if he realizes it has no cure he will want to make them stop HIS way.
Renae Pugh <tchng2lrn@yahoo.com>
Chickasha, OK USA

How do you deal with headaches and work?
PHIL WEATHERSPOON <PSPOON76@HOTMAIL.COM>
NORTHPORT, AL USA

ITs nice to see Im not alone. I have been suffering with CH for 16 yrs! I have a question for someone out there. After I get to about 10 attacks i have this concussion feeling that takes about a week to 2 weeks after my cycle to go away! I assume its just head tramua from the attacks but its also a little scary! Can anyone concure?
Chuck <cncfavory@verizon.net>
Ft wayne, IN USA

Hi, I am a care taker and lover of a cluster headache victim. I have been with him for twelve years. This has been an experience I will never forget. We went through a 90 day ordeal in 2008 that left me lost. Now, it's 2010 and they are back. I found this doc in Raleigh, NC that is a God send. Migranal has been able to keep them bearable, however, cluster headaches are never bearable. Please email me anything you all have on cluster headaches that would help this Carolina Girl deal with helping a loved one deal with this. No sleep sucks!
Vanessia <vanessia8772@yahoo.com>
Youngsville, nc USA

I'm 71, been getting these ghastly things since my mid forties I guess, but sometimes at quite long intervals, up to five years. They have got worse, not better, over time. Each cluster has different features. At least two have lasted three months. The one I'm in now looks like doing that too. Only someone who has had these can have any idea of how much they can hurt, and how useless ordinary analgesics can be even in overdoses. The only reliable treatments in my case are sumatriptan succinate injections and - to a lesser extent - oxygen. Always try oxygen first but sometimes it just doesn't cut the mustard even after half an hour. Works better during the night and after a sumatriptan shot has started to wear off, but always takes too long for comfort. Getting through a lot of it, more than 4,000 litres a week if my calculation is correct. Fortunately under the NHS at my age I can get both these things free (hope the promised cuts don't bring that to an end). Can't help feeling sorry for US citizens though, who may have to pay full price for sumatriptan, quite steep unless you are well-heeled. Can't help wondering why the doc hasn't suggested one of the prophylactic drug regimes (ergotamine and such). Perhaps something to do with my other conditions (high blood pressure, under control though, a heart pacemaker and fairly depraved drinking and smoking habits). But it would be nice not getting the headaches at all, or panicking about securing supplies of sumatriptan shots - most chemists don't stock them - or the ultimate nightmare of it ceasing to be effective...
John Howe <jhnhowe42@gmail.com>
London, England

After reading all of the posts on this website, I don't know if I feel lucky, or scared that this could get worse. I have had cluster headaches since 1986 when I was in college. I guess I feel lucky because they only come every 4-5 years for about 1 month. I am about 2.5 weeks in this time. I just pray that after the month they are gone for 4 more years. I get about 1-2 headaches a day lasting about 1 hr. the most severe pain for about 45 minutes. I feel for those whose pain lasts hours and days because after the 45 minutes I thank god they are gone. I strongest thing I tried last time I had the headaches in 2006 was Imitrex pills. They did work, but I did read on this site about rebound headaches from them. And that is what happened to me. I always got the worst headache in the morning, between 7:30 am and 10 am. I took imitrex and the pain subsided. But then the headaches started coming in the middle of the night and bothering my sleep. I have decided to use over the counter meds this time and they seem to be helping somewhat, but I feel I can get through the hour a day, which most people on this site would probably be thankful for. I feel for all of you as I know the pain, the tearing eye, the runny nose and the hot poker through the right side of my head. I had the luck that a doctor diagnosed me in the mid 90's so at least I knew what I was dealing with. Until I read this site though I thought everyone's headache came in 4 to 5 year stints. Good luck to all and I hope that one day there is a cure for the worst sufferers.
BC Sanders <bcs1701e@mail.com>
Marlboro, NJ USA

Kind of weird to say "these are my people," but it was kind of a God-send to find this site this morning. I have been a cluster sufferer for almost 20 years now, and have been forunate to not have had an episode for almost 4 years. Until now. I'm in the middle of the worst cycle I've ever experience and it's ravaging my body and mind. Thank God for a sympathetic wife. I haven't slept for a month now, which exacerbates the headaches. But you all know the bitter irony of that. I finally had to get some better understanding of what's going on in my head here so here I am. There is some comfort in knowing there are others out there. Good luck to all and thanks for your stories and info.
George P <thingfishp@yahoo.com>
New Haven, CT USA

been 13 days since my last one after 10 week straight 400am this after an 8 year break guess u can never be sure trigger 1 beer same time of year late february can just now go to bed and rest the anxiety is almost as bad as the pain
mike schaefer <mschaefer1167@yahoo.com>
san antonio, texas USA

Something to read between attacks: http://clusterpain.blogspot.com/
Xavier <voidwork@gmail.com>
Belgium

It will be a year next month that I went to the emergency room for my CHeadaches. I am concerned that I will once again experience an accute CH since they say that it can be related to the biologic or circadian rythmn. Has anyone experience with this. Feel free to send me a response. Thanks so much. Wishing you all good health.
jean friedline <jafriedline@aol.com>
oldsmar, fl USA

Am a long time clusterheadacher and normally visit this site over the years when ever am going through a bad 2 or 3 months of headaches.Just to read everyone else's entries so I know am not alone though my family have always been understanding and supportive. Going back almost 35 years through all the doctors, hospitalizations,preventives, abortives and my own sometimes successful get me through by doing certain things; but in the last few years verapimal and on occassion imitrex orally has worked ok for me. It could just be am getting older (and growing out of them?? not likely)but has anyone ever tried or know anything about Coenzyme Q10 for use for us sufferers.Please don't all going running to the web and research and come back with what you have read. I did that already. Am looking to see if anyone has ever tried or if their neurologist has ever recommended. Seems its being used by some neurologists to treat migraines but I don't see it being mentioned or used by any of the major headache clinics. thanks
mike <mikezav1@hotmail.com>
USA

Dear All, I went to see ENT consultant today I was a bit gob smacked with diagnosis of CH though do have an ENT issue too. I thought I was going mad with 3 to 14 days of pain starting at the same time each day like clockwork but they last for several hours, this all started august last year. I have to say I am terrified by CH after a little rading and had never heard of it before now. I've been prescribed imigran tablets for when I have my next attack. I am going to have a good read now.
Dee <dizzidance@yahoo.co.uk>
notts, UK

WOW!! This morning I had never heard of CH but idly skimming through the letters in a magazine came accross a brief description of the symptoms I have been experiencing for 20 years.Tonight I've found you all.What can I say, I'm amazed and astounded,and as I sit at this computer awaiting the inevitable arrival of our mutual beastly friend (in an hour exactly) I am at last content. When the side of my face is ripped off I know that inside somewhere I will be smiling, for at last the demon has a name,and in naming the beast I have some power over it.Finding this site has been a revalation. One thing though; I liked the sympathy for the devil bit, but having played in big stupid rock bands all my adult life, I've found that whenever I played live during a bout the pain just never came. Adrenaline probably, but I've always considered loud nasty rock'n'roll to be my friend and an ally against the Beast. That said I must wind up before the pain arrives, my left eye is puffing up as I type so I'm off. I am ,once again, so glad to have found you all.G.
Graham <mooweh@slinshot.co.nz>
Wellington, New Zealand

Hello, been suffering from Clusters since 1995!
Dan Skari <dmcmskari1@msn.com>
Centennial, CO USA

I believe that I have accidentally discovered the cause of MY headaches. FWIW, I have the unilateral variety and have discovered an OTC combination that relieved my pain in less than 15 seconds. (I'm not kidding) Recipe listed at the end. I am not a Dr. This is something that I found that works for me. I have dealt with these headaches for 3-4 years (chronic) but was just diagnosed with Cluster Headaches last week by my ENT. I have undergone $20K + in dental procedures and also a sinus surgery without relief. I believe these were a result of guesswork on the part of the respective doctors that I have visited. I started with my PCP first but he couldn't figure it out so he sent me to a dentist. I have had 3 molars pulled, replaced by implants and bridgework along with many other dental procedures. When the headaches resumed shortly afterwards my endodontist, periodontist, and dentist conferred and suggested TMJ syndrome but recommended that I see an ENT before they would officially diagnose it as TMJ. The ENT immediately discovered a bone spur on my septum which touched the opposing sinus tissue along with a grossly deviated septum and recommended surgery to correct them which I had. The headaches only briefly retreated. Subsequent post-op visits resulted in him giving up. He then recommended me to a neurologist to get on meds which I respectfully declined. Initially I was convinced the pain was dental in origin. After the dental procedures failed to stop the headaches I became and still am convinced that it is sinus related. But, I have had multiple M.R.I.'s and CT's without a successful finding. Last week I had an "event" that occurred shortly after an episode. I had had an unusually bad night. I had 4 episodes ranging from 20 minutes to a little more than 2 hrs. The following day I was working on a project at the house that was exceptionally dusty, mixing and pouring concrete. Later in the day my nose started running but I couldn't get to a tissue so I "snorted" to clear my sinus. I proceeded to spit to get rid of the phlegm and noticed something foreign and solid within it. What I found was a large (1/2" x 1/4") irregularly shaped chunk of plaque. Over the last 15+ years this specific type of event had occurred 4-5 times that I can remember. It started well before the headaches did. I always wondered where this debris had came from but never figured it out. The previous times it was much smaller than this one and had always been an off white or yellowish color. This time, in addition to its much increased size, the color was brownish pink indicating to me that it had come from an infected site. Prior to this occurrence all of my episodes were typical including severe pain at my molars on the top left side of my mouth along with the side of my nose and encompassing my left eye. After "snorting" this chunk of plaque out I immediately felt that it had come from within my sinus passage and that I had found the cause of the headaches. I went 2 nights/days without an episode and was feeling very relieved. Unfortunately on the third night they re-manifested. This time, however there was a distinct difference in the location of the pain but the severity of the pain itself was identical to previous episodes. This time it was minimal in my teeth but every bit as intense up the side of my nose and behind my eye. The headaches also started occurring in the daytime which previously had been only an anomaly. Now, feeling as if I was onto something I scheduled another appointment with my ENT to attempt to validate my suspicions. While I was waiting for him at this appointment I had an episode. This had coincidentally never occurred before. It was the typical variety including tearing, droopy eyelid, sweating etc. I was about 10 minutes into it when he came in and began the exam. He immediately suggested Cluster Headaches for the first time when he saw my face. I relayed to him the recent events that prompted this visit and requested that he scope my sinus to see if there were any abnormal fissures / cavities / folds in the passage that could have been home to this chunk of plaque. Prior to the scope he sprayed my sinus with a mist that included something to ease the discomfort of the scope touching my sinus tissue. I almost immediately noticed a degree of relief from grip of the episode I was currently in the midst of although it did not completely alleviate the pain. He proceeded with the scope and mentioned that he did see a fold that appeared unusual on the left side of my sinus. He even went as far to comment that he wished he was able to take a picture of it but was unable to do so. He scheduled me for another MRI of my sinus but neither he or the radiologist found anything that they thought was extraordinary. My ENT then, again referred me to a Neurologist to get on meds. BUT THAT CHUNK OF INFECTED LOOKING PLAQUE HAD TO HAVE COME FROM SOMEWHERE?!! This finally brings me to the end of my diatribe. I am fully convinced that at some point in time a piece of dust or other foreign particle attached itself to my sinus which caused that site to become irritated. This could have occurred in a natural fold of my sinus or the irritation could have started a fissure on the tissue. Over time a pore at that location secreted oils which hardened in this fissure / fold. Subsequent minor infections at this location enlarged the cavity and allowed larger quantities of this oil / plaque to be deposited. (Similar to the fissures that appear on your tonsils after a bout with strep throat) Over the years the deposits have been intermittently expelled but the fissure has remained only to be once again filled with plaque, getting infected, growing larger and eating deeper into the sinus tissue. Up to this point no unusual pain is associated with it due to its size and depth. At some point however, the fissure becomes deep enough to encroach upon the tri-lateral(?) nerve bundle which runs from your neck, above the top molars, up the side of your nose and up to your eye socket. It may actually burrow deep enough to physically touch the nerve bundle which would explain the excruciating pain associated with these episodes. This is when the headaches begin. At this point the chunk of plaque within the fissure is fairly large. I believe there are 2 varieties of episodes a dry episode and an infected one. The dry episode would occur when the sinus tissue at the site dries out (breathing deeply through your nose while sleeping) or otherwise gets irritated by a spice, aroma, or an allergen. An episode then begins. The fissure expands as it dries out and allows air to touch the nerve endings which would cause discomfort . Rapid pulse and sweating often accompany these headaches. I believe that the sinus tissue also sweats which moistens or lubricates the tissue and squelches the episode by temporarily cutting off the air supply to the nerve ending. You go back to sleep, the temporary fix ceases and you wake up with another headache. This might be the type of episode the WWW system might work on? The infected episodes are similar but there are differences. In this case the fissure has become infected. The infection could cause sporadic inflammation / swelling applying pressure to the nerves at the site. Possibly just decaying infected cells at the site encroaching closer to the nerve cause the pain. I believe the infected episodes are the ones that not only occur while sleeping but also anytime of the day. Over the years that I have dealt with this I have noticed some episodic series are much worse than others but could not determine anything different that I had done. The reason I believe in the separate causes is that over the years I have been prescribed bacterial antibiotics; Augmentin, amoxicillin, etc, thinking that the pain was related to dental issues and on several occasions the headaches go briefly (1-4 weeks) into remission while in a couple of instances there was no relief. I believe that I was in the middle of an infected episode when I dislodged the chunk of plaque mainly due to the color of the particle. Had this occurred in between infections I believe that it alone would have relieved the headaches because the fissure would have completely closed keeping air from getting deep enough to aggravate the nerves. This would have caused a remission until the chunk re-formed in its fissure starting the whole process over once again. The larger size of the chunk adds to the sensation of dental headaches by creating its own pressure within the fissure. This additional pressure could enable merely clenching your jaw to trigger an episode( rub the nerve) I believe that the pain persisted this time due to inflammation of the site due to an infection which initiated a request to my PCP to prescribe an antibiotic which seems to be working. After almost three years or so of 4 to 6 episodic nights per week, excluding a few short breaks I appear to have relief, for now. When they reappear, and I fully expect them to do so because the fissure is still there, I will attempt to locate an ENT that will listen to me rather than just prescribe meds, call it TMJ, or refer me to a neurologist to run more tests and prescribe meds. In closing, after I realized that the solution my ENT sprayed in my sinus prior to scoping me relieved the pain somewhat, I became curious. As an experiment I combined Afrin NoDrip (mist not spray) with Liquid Anbesol Maximum Strength in approximately a 2 to 1 ratio to try with my next episode. That same afternoon I was working outside in a dusty environment. I was very involved trying to beat a storm that was brewing when an episode began. I kept on with what I was doing hoping the headache would subside on its own but it didn t. The pain reached the point that I was having a hard time concentrating so I went inside and tried my concoction. The pain was completely gone in less than 15 seconds! I now have a new "best friend". Jeff Savage w/m, 46, smoker x 30y, Diet Cokeaholic, occasional drinker, 2 to 4 sinus infections per year prior to sinus surgery. Rockwall Texas Note:  Initially I used Advil to help with the pain but later realized it was of no help. The pain would go away when it was ready to.  Clusters consistently begin about 1 hour after I fall asleep.
Jeff Savage <jgjsavage@sbcglobal.net>
Rockwall, tx USA

TO DJBRUEY and JOHAN SALARDA and anyone else losing hope. hi ive lived with this curse since 1973. after so many doctors, chiropractors,accupucturists, accupressur and hundreds of thousnds of dollars. i cant list or even remember all the different diognosis and medications i have been subjected to. even an offer to kill the occipital nerve. my nightmare comes twice a year in late summer and late winter and lasts for about three months. they start out with just the feeling in my face. usually on the left side. i have had a few choose the right. then they escalate, each attack a little worse than the one before each one more unbearable than the one before until they peak about six weeks into the cycle then they slowly decrease with each attack until the cycle is over it takes about three months give or take a week or two needless to say my life has been hmmm what word or words could describe dont know none fit to describe the pain in 1993 my third wife-CH dont work well with relationships, GOD bless all three for hanging in as long as they did-found the Houston headache clinic!! obviously in houston texas with a branch in dallas where i went dr nenan mathew diagnosed me with CLUSTER HEADACHES and prescribed IMITREX SUMATRIPTAN SUCCINATE this is an injection and can only be taken 2 times a day but it works in about 3 to 5 minutes and my pain is gone. miracle, probably saved my life i have had a gun to my head before. unfortunatly i have had as many as 10 attacks in one 24 hr period so the dr has me take a prescribed pain medication when i cant use imetrex the good part is i have somehow been successful a couple of times and have a wonderful women children and grandchildren and a fantastic greatgrandson im especially writing this for DJBRUEY,, JOHAN SALARDA and anyone who may feel out of hope i suggest do not waste time and money on neurologists or any other person. go to someone who specialises in head pain. thanks for this site now i know there are others who know how horrible this pain is becouse it cant be described noone can really comprehend how bad it is however im sorry there are others anywhere in the world because i wouldnt wish this on anyone well maybe someone like charles manson that would fit. thank you
Stephen Lewis <stephenlewis2@cox.net>
Glendale, Az USA

I'm currently and once again being attacked by CH. I couldn t recall exactly when I first felt having this CH as I'm not too sure if it was a CH or Sinusitis. I was in third year high school when I felt half pain on my head usually attacks my right side. I ve confessed to my teacher that I suddenly suffer from this pain very occasional however. I was recommended to go to optometrist for my eyes to be checked and I did, (the eye test results was a normal vision). One time, I was with my younger brother in a cinema and while on the middle of the scene I felt the pain occurring and finally attacks me with too much headache (right sided). We went to a doctor after and I was diagnosed with sinusitis and I was given medications which relieves my pain. There were many occupations I manifested this symptoms but all I did was too ignore and tolerate the pain. I felt hopeless but never lost hope and tried to combat it and fought through prayers (meditations). 5-7 years later I didn t suffered from pain. In 1999 (Saudi Arabia), I was being crippled by pain (right sided head ache with very intense pain that occurs mostly at 0200H each night same time, then few weeks the pain have shifted to occur every 0800H-0900H in the morning for almost a month). I worked in the hospital on a rotational shift basis day and night and it was difficult for me having this burden I didn t expect to have. Thus, I am contemplating to resign in my job and to go home instead. It was a come what may situation as I am giving up thinking I will die at anytime. Prior to my decision, I was evaluated by a neurologist, a Saudi doctor who said that I am not suffering from anything and I am pretty much fit to work and I was not given any medication at all (Isn t it that was too inhuman?) every time I had pain the only remedy that relieves me was to soaked my head in a bath tub full of ice and cold water and some analgesia (self medication) (paracetamol 1-2 grams every time I suffer from pain). Luckily, the pain has gone and didn t come back. In 2004 (England), the terrible pain has come back. I suffered for almost 3 weeks same manifestation as above and finally my friends brought me to the hospital where I was confined for a couple of days under medicine then I was referred to neurologist where I was diagnosed with Clustered Headache. Verapamil, Steroids and Sumatriptan were my medications and oxygen. I was relieved and few days I was back to my daily routine works. My head ache has disappeared. And last month (April) up to the present the pain has visited me again and giving me irritations here I am fighting. Gabriel
gabriel <gdalbino@yahoo.com>
Birmingham, United Kingdom

For some reason I was looking up "why we feel pain" on google. And stumbled upon some info on headaches. That's where I was introduced to the idea of a "cluster headache". Before looking up more info I pictured it as a dozen tiny headaches in a compressed area. Then I typed "cluster headache" into wikipedia and instantly knew that it's what I suffer from. It started some time last year during college so I naturally assumed it was just stress related. I recall having pain in my left temple (usually) and it ranged from slight dull pains to extremely intense sharp throbbing sensations. But something I noticed back then, and shuffled to the back of my mind, was that it was cyclic; it had recurred in a specific interval, it would even go away completely for a long time then come back. Of course I never bothered recording it and I can barely remember the last time I had one. It's interesting to read about it, find more information on the phenomenon; the more I read, the more I'm convinced it's what I have. Well thank you for educating me more on this concept.
Shane <shane.ozouf@gmail.com>
Edmonton, AB Canada

Hi everyone !!!! I have suffered with cluster headaches for the last 27 years, I am episodic and I'm currently 6 months into my latest attack
Eric Renshaw <eric.renshaw@btinternet.com>
manchester, England

HI to all. Just a little update since my headaches started about 1 month ago. As I wrote in an earlier comment when I was having 2-4 headaches a day I have went to my doc. twice once on 4-19 and again on 4-26. I went through my normal routine of a occipital nerve block shot and bam I have been pain free since my last visit. I have been going to this Dr. since 1998 and the last shots I had were 29 months ago!!! This is the only way I have been able to get rid of ECH each time they decide to come my way. It is such a relief to be able to sleep again knowing that I am not going to wake up 2 times a nite with the pain and agony of these headaches. He is a vascular surgeon and the only one that will give these shots to me. He has me show him where the pain in my upper neck area and he marks it and gives me a shot of cortizone and steroid and the pain and tenseness and relief are instant. If 1 shot doesn't work I go back 1 week later and get another one. The first time I went In '98 I went 3 times, but since then it has never taken more than 2 visits. My insurance I had at the time did not cover any of the bill since he was a vascular surgeon they considered the shot as surgery but for $100.00 per visit it was way worth it considering what I was going through. Occipital nerve block has worked for me for the last 12 years and they seem to not come as often the older I get. Just fyi hope this will help someone with their pain. Again this Dr. is located in Altus, Okla.
Curtice <curticemorris@wildblue.net>
ok USA

I had my first cluster headache in 2nd grade. I thought my eye was going to fall out, and I had that pain for 3 days straight. I cried all the time, I had no clue what was wrong with me. My mom took me to so many children's hospitals, but no one knew what was wrong. That was during the springtime and it started at about 4 or 5 o clock. I was fine for about 3 years. I had another one in 5th grade, this time it was a lot worse,also at 4 o clock but it was in May. Then the summer before high school I had it worse than I ever did before. I couldn't sleep for 4 days straight. I just locked myself in my room screaming for HOURS on end. I couldn't fall asleep for more than 10 minutes at a time; I would wake up with my teeth dug into my cheek, bleeding. I would hit my head on the ground, cry, pull my hair out, and I literally came really close to jumping out the window in my room. After having this go on every night from 5 pm until 7 am, my dad decided to drive me to the ER at 3am. I got there and after a CT scan and hours on end laying in the bed, thye told me to leave because "nothing was wrong". I now have them all the time in the spring/summertime. They start in the lateafternoon and end late in the morning; I feel a tingly, electric wave come over me which then builds up into a full on crazy headache. None of my doctors believe me about the pain, and i dont know what to do anymore :(
Natalia
Chicago, IL USA

I'm 18 years old - just started suffering these 4 days ago. Normally I can just ignore pain and get on with it, but after work the other day I noticed a strange new sensation above my left eye. Pretty soon I became unable to concentrate on anything but the pain. I was woken up that night by it again. The next day I searched on the internet for all the different types of headaches. None matched the symptoms, until I read about Cluster Headaches, and this exactly matched what I was feeling. I'm getting them every morning at around 8:30, with "shadows" commencing at around 7:45, and every evening at around 21:00, with the headache lasting around 1 and a half hours. I am noticeably weakened during attacks, although I can just about deal with the sheer pain (I am typing in the midst of my morning session). I think I probably have not yet experienced the full potential of CH, as whilst the pain is severe it is only the second most painful thing I have ever felt in my life (the first being a dislocated knee, which was thankfully much shorter lived pain). What is bad about CH is that a. Ibuprofen and other painkillers do nothing to ease your pain b. neither does pressing your skull c. you know that when the pain finally ends you might just get another attack later d. you are pretty distracted by it, and i experience clausterphobia, a feelign of not being able to escape and panic. the bright side is that the pain eventually ceases and you will be fine. What's good about them
Rod <roddrip@gmail.com>
UK

Morning, wow what an awesome site. 05h33am here and trying to type with a paralised (one sided) face teary eye, runny nose yet blocked at the same time and trying to sit and stand while i type this to ease the pain a little. One side of my head feels like its on fire, burning like i cant explain, only if uve had it will you know. and i cant take any Trameset or Maxalt RPD as im seeing the neurologist at 9am hopefully for a nerve block injection to put an end to this for good. These CH happen as the freeken same time every night or rather morning, like a bloody alarm clock ringing just to wake my cluster headach up just incase it doesnt do it on its own :) why why why !!!! was told not to eat or take any med's 12 hours before i see the doc this morning's but im so tempted to slip a tab. Anyway have a awesome day all
Mark <baflightdeck@yahoo.com>
Cape Town, South Africa

Hello ! My name is Kazuya, I'm from JAPAN. I started to have this great cluster-headache about 5 years ago. I didnt know what this pain was. I went to the doctors, and I was told it probably is migrain headache. But none of the migrain painkiller works. (No, it works but by the time it start to work, the whole pack or the bottle was gone) So, I was kind of ODing on headache medicine. Then I found Imigran(Imitrex)pills. That works in about 15-20 minutes and, it works like a thunder-storm or a Hurricane, Blizzard has just left, clear, no-pain, happy. But the problem was with that Imigran, with the medical insurance, it cost me about $4 a pill. I used to have 4-5 attacks a day, so about $20 a day for about 3 months(about 90 days) Thats almost $2000 just for that Imigran. Then, I havent had the devilish-attack for 2 years. But March 2010, the Demon has once again risen. But this time, I cant afford $2000 for 3 months(My pay check for 3 months is $6000-7000, so thats about 1/3 of it) So I started to use cheap drug store brand headache medicine that most of the headache patients take, $5 for 40 pills or so. First, it was working pretty well. But then, I had to take more amount as days pass. I was taking about 20 pills a day at most painful day. Well, 20 pills a day is less than 1 pill of Imigran. So, at first, I really didnt care. But then, I was already having side effects from that cheap medicine. Dizzy, Sleepy, Tired, Cant think straight, Memory loss, Cant eat, more. But then, I was surfing thru the internet, and remembered of this page I once saw 3 years ago. Nothing new I thought(reading everyones comments)Everyone is still sufering... But then I saw something I didnt realize 3 years ago. WATER X 3 !?!?!? What is that? I read the page. Water? Just plain free drinking WATER!!? NO WAY!!. The next day, I didnt wake up with the devil. So, from that morning, I started to drink water, just like it said. About every half-hour. This story was on April 19th 2010. Its been 3 days since I started to drink a lot of water. I had the attack only on the first day early morning, so I took the cheap medicine.( It went away in half-hour or so) Sinc Then, for 3 days, I HAVENT HAD THE DEVILISH CLUSTER ATTACK !!!!!! OH MY FXXKING GOD! HOLY COW! HOLY SXXT! GOD DXXN! ANY thing, everything I tried for years, spent thousands of dollars, and All of a sudden, WATER?? H2O?? WOWOWOWOWOWOWOWOWOWOWOWOWOW! Listen Everyone. It worked for me. Like Margie said, It might not work for everyone. BUT Its free! It may work, Its worth a try! I cant thank enough to Margie and her husband. But I leave this message to everyone who is dying to get any sort of new ways to cope with the pain, Please try this WATER method! Remember, WATER WATER WATER !
Kazuya Tomatsu <tomatsukm@mx35.tiki.ne.jp>
Okayama, JAPAN

Hi! It is 2:30 a.m.and I am talking with my 22 year old son who we just discovered since 18 has been suffering with cluster headaches. He is 6hours away at school so you can imagine how I feel;helpless. I need a neurologist near Norfolk, Virginia that he could see while he is at school. I am at a loss as to where to start for help. Thank you soo much!
Donna <DJBRUEY@COMCAST.NET>
HADDON HEIGHTS, NJ USA

Hi my name is bill I've been suffering from ch for three years now. I remember the first headache as if it were yesterday the pain was so intence that I thanked god when it was over and hoped never feel that pain again but two days later it was back and then the next day after that and didn't unstand what was wrong I was trying everything to ease the pain but nothing worked I keep going to differnt doctors and nothing then a online friend that I was tell about the headaches said he suffered from the same thing and told me about cluster headaches so I looked online and found that there's nothing they can do I just wish this pain would end I c now that their are many of us that I'm not alone just don't know how much longer I can last my kids r the only thing keeping me going
bill <billgraham80@sprint.blackberry.net>
keansburg, nj USA

Hi guys typing this after my first "cluster" for 3 years,last ones being on hols in turkey,after describing my pain to a turkish pharmacist she gave me a strip of 8 blue tablets(i assure you they were not viagra lol),anyway they worked!! though through away the box etc whilst over there and drs here dont know what they were!.1st time in a cluster period whilst access to internet too and found this site a great comfort so thanks guys.
Mark <navier75@googlemail.com>
Hull, England

Very happy to have stumbled upon this site, since it really does feel like I've been alone in this. Nobody can really understand how debilitating the pain is and how next to impossible it can be to stop an attack and still function afterwords. I've been mostly headache-free for about two years, but this March I started on the worst cycle ever. And it's still going on. I started back on lithium therapy a few weeks ago and it's been helping some, but not all the way. Hoping it ends soon.
Judd <juddsmith02184@yahoo.com>
Braintree, MA USA

And everyone acted like it was an excuse for me to get out of work, the bosses I mean. I just take an aspirin and just tough it out they told me. I said you get one of these headaches and your bottle will be gone in a short amount of time with no relief and stomach pain to boot. Most people have no idea of the pain involved with these type headaches because they have never had one or watched someone who has had them. I have spent thousands of dollars and visited many doctors to try and figure out what was going on with my headaches to no avail and of course no diagnosis. All of them had their own cure, which is too many to even start to mention with endless medications that didn't do any thing but cost me more money more headaches and more pain. I finally got diagnosed when I went to my old family doctor (15 yrs.after the fact), he just sat on a stool and asked me to explain what was going on with me. I told him of the symptoms I was having and without hesitation he told me I had cluster headaches! Wow all the know it all doctors that I went to and not one ever had a clue of what I had and what I was going through. Maybe their in it for the money. Especially the one that while he was examining me I was having a headache and I just asked him just please give me something for the pain anything a Tylenol 3, anything! He proceeded to tell me how airline pilots couldn't get their radio frequencies right, I told I m not going to be flyin no airplane after taking Tylenol 3 and proceeded to write me a script for 100 pills which of course didn't work. Then he decided from a allergy test that I needed shots of histamine. Another big mistake. He still never figured out what was wrong except maybe I was just wanting drugs suspecting that I was making it all up. Any way I have had cluster headaches for going on 25 yrs. now. I take alprazaloam and robaxin 1-3 time a day depending on if I am having any headaches but my best results are trigger point injections in the orbisipital nerve at the base of my head. I go to a vascular surgoen and he is the only one that will even attempt to do this procedure. The results are amazing as soon as he gives me the shot it will stop the pain immediately 90-95% of the time. If the headaches continue I go back in 7-10 days and he repeats the procedure. I have never had more than 2 shots during a cycle, no more headaches this time for 2 1/2 years. They usually work for at least 6 months to a year when I first took them. But as I have gotten older(I am now 47) the cycle doesn't seem to repeat itself as often. I know this is a long comment but this truly works!!! I can remember a time when I banged my head on the wall to try and get it to hurt in a different spot. Ice doesn't work for me it makes it more intense, can't lay down, but one thing that usually works everytime is a cold washrag that my wife would run up and down my back (lightly) almost tickling it and occasionally touching the side of my neck and as soon as I start feeling chills go up and down my back it is like turning off a light switch and the pain of the headache is gone. Putting a fan on you while doing this can help too. I will be sore in my neck area still but the pain usually vanishes, (the most important part of it all is to STAY CALM and do not get upset this will make them worst than you ever thought, believe me I know.) This is what I do until I can get in to my doc to get my shot. I am so thankful that it gives me relief and the headaches stay away. I will share info. with you if you are in pain and maybe the shots will work for you. It has been my only relief that was reliable and worked every time for quite some time before they returned again last week. I can tell you the doctor is located in Altus, Okla. and he is my only defense against this monster.
Curtice <curticemorris@wildblue.net>
ok USA

Approximately 4 years ago I had what I believe was my first attack- I had to sit in my closet for days so I would not throw myself through my bedroom window to escape the pain. However, it wasn't until this year when I almost put my hand through a window that I was properly diagnosed with cluster headaches. A grown woman of 33 years old sitting in my car crying from relief of finally having an answer. Since that time I have been put on verapamil, taken steroids and tried oxygen. On Sunday I celebrated 3 weeks without pain only to be taken to my knees in pain on Monday. Throughout my life I have dealt with many illnesses; it has been these cluster headaches that have taken me to the edge of the cliff! I am a mental health counselor who honestly considered institutionalizing herself to prevent myself from hurting myself from the pain. The thought that this is starting again and my life will be stopped again terrifies me. The pain feels as though someone is putting a burning hot poker through my eyeball- the pain then goes into my cheek, temple and to my neck- all the time pleading with someone to stop the pain! I have looked at this page many times afraid to share- but everytime I am here I find comfort. I apologize for that- I wish no one else knew what this pain felt like! Either way I thank you all for opening your hearts and helping me find solace and a place that I belong.
Casey Russell <dalmayhappy@yahoo.com>
Sarasota, Fl USA

I think I am done crying now. almost 30 years of ECH and I never knew so many of us or this great website existed. The cries we have for help that go unanswered is just not right. Im sure a lot of our lives could have been better without this affliction. Careers would have lasted, School would have been less problems etc, etc. Just coming to this sight made me feel supported. Thank you for every word I have read. I am 40 and have suffered Episodic Clusters for about 30 years. Switched to my left eye for one year. (I think I prayed for a change hard enough, that the effin thing wanted to mess with me!) I still feel the one I abort tells the next one to try harder because its always a doozie. I have had a period of about three years of remission after quitting smoking for 18 years. (Thought I found the answer.) (I quit again and of all things the cycle started at the end of the month I quit this time. But all you smokers should stop anyways.Just sayin!) But they are back. Imitrex Injections, Naprosyn, Ice and make myself go to sleep. I gave into them years ago, so if I quit fighting and relax by going and go to sleep no matter how impossible that sounds or go back to sleep, w/wo drugs whatever it takes, resets my clock. Thank you folks, and my Wife for being there.ü
Robert <rortolani@magnetopower.com>
garland, tx USA

im 42 now. had cluters since i was 30. every 3 years at spring time. 8.30pm every time. theyre back ! thats why im back. might of broke there back though as the last two days ive been midday and midnight ! thank god for oxyegen. god help us all. martin.
martin <dubkiller@hotmail.co.uk>
salisbury, england

I've had cluster headaches since the age of 14 and that's 40 years ago. I had a 7 year remission going and I thought they were gone for good but not so and I'm on my fourth day of back in the ice bucket again. When I read the entries here I knew there were others that really know what it's like to suffer from these nightmares. Even the health care providers I have seen over the years have treated me with less empathy than the condition requires. When I am in the middle of "an episode" I begin to feel as if I'm going to lose my mind, I beg, I get angry, I cry, and I become scared wondering how am I going to survive until these things are gone again. Reading these posts here has helped me see that it's not my own private little hell and others get thrown in there as well. I hope to stay active here and learn all I can and even though we sufferers are a somewhat rare breed, if I can do anything to help verify the horibleness of this condition I will.
Randall Bartley <rabartley@comcast.net>
University Place, WA USA

Hi all, It is great to find this site. I am 55 yrs old and have had CH on and off for around 20 years now. I first got them when I was in south Africa where my famuily and I lived for 10 years. They disapeared for some years and then reappeared when I was bac in NZ. I had a further rest from them for a couple of years but now they are back almost full time. I am currently going through a bad patch with 2 episodes per day. I get them in the morning and evening but interestingly not at night or while sleeping. My symptoms are a ache then a pain over the left eye mostly but sometimes the right eye. My affected eye often weeps just before and during a CH. I do get a sort of warning like a pressure build up or a weird feeling in my head. My scalp is also very sensitive and best described as fragile. Over the years the treatment best for me which was first prescribed in South Africa is a tablet called Cafergot. that is the NZ name but I am not sure what it is called in other countries. If taken early enough it can help me avoid a Ch entirely in some cases or at least releive and shorten the episode. I tried what are feectively blood thinners as suggested by my female doctor but then found i was tired and most importantly had difficulty conducting my conjugal duties! so they were a no go! so Cafergot is how I treat mine. It helps but is not a miracle cure just gives some relief. I can see other people have far worse CH and episodes than I do but I know it is debilitating. For bad ones I have to lay down in a dark room with a wet cloth over my temple. Mine last typically 30 minutes to one hour and I am left feeling washed out afterwards. Hope this helps and any advice is welcome. I smoke but do not drink alcohol.
Graeme Trass <triangle@world-net.co.nz>
Taupo, New Zealand

Hello everybody I've had them for about 23 years or so and seen many doctors and had the same luck as everybody else "none" get them every 2 years for about 6 weeks, this is what I do, sleep with a fan on me and when I wake up with one I take 3 Excedrin tension tablits and 1 BC Powder I think the caffine in it helps me then I put a cold pack on the back of my neck for 10 minutes then lay back down with the cold pack on the side of my face that hurts and fall back asleep in about 15 minutes, during the day as soon as I fell one I take 3 Excedrin and a BC powder no messing around, I'm lucky at work and they understand and let me lay down for about 20 minutes or so I also keep a cold pack at work, hope this helps some of you and yea the pain is unreal.
Don Smith <dwsathome@yahoo.com>
Edwardsburg, MI USA

My husband has suffered from CH's for about 20 years now. It is so hard to watch someone you care for so much go through so much pain. He was in remission for about 5 years but they have since returned. Recently, during one of our many discussions, it was like he told me he found out he had cancer and that he was going to die. It was just a matter of time. If the pain doesn't kill him, the medicine will. I have reached a point where I don't like to tell other people what he is suffering from, because they just don't understand. All they hear is headache and they are like "Oh, yeah, I have those myself." Like others have said, you just want to punch these people in the face because they really do not have any effin' idea!!!!! I have tried to explain it countless times, but until you actually watch someone go through it, forget it. I know I could never understand what it is to be like on the other side, but it is very difficult on this side too. My heart goes out to everyone who suffers from this terrible, terrible affliction. Hopefully one day there will be relief for everyone. No person deserves to suffer from so much pain, clusterheads, cancer patients, or whatever alike. Well, some might, because there are always exceptions, but most people don't.
Gina Wilson <gmwilson@carolina.rr.com>
Charlotte, NC USA

Hello everyone, i've just been reading some of your messages about cluster headaches, i've only just discoverd this site and it's good to know that there are other people out there who understand what im going through.About eighteen months ago i was referd to a nurologist after suffering the most intense and violent pain in my right eye , temple, cheek, ear,jaw down my neck and into my right shoulder for eleven days. Icouldn't eat sleep was completeley restless and agressive and ready for walking in front of a train. Not knowing what was happening to me i went to my gp's who prescribed codine and paracetamol along with anti inflamatory drugs, telling me it was just a trapped nerve in my neck.Not long after this gp retired and i was transfered to another gp, when i went to see this new gp he knew straight away what was wrong with me and refered me to see proffesor amir al-din at pinderfields hospital.After having undergone a battery of test to rule out anything else i was told that i was suffering from chronic cluster headaches, this was something that i had never heard of before. am presently taking gabapentin capsules, topiramate capsules, sumatriptan injections and oxygen. Having said that the combination as yet is not giving me any real relief and my attacks last between 50 mins and 5 hours each time and i suffer on average four attacks a day. For me this is not a life it is just an existence going from one attack then sat crying knowing that the next is on it's way. My wife and son just sit there helpless crying themselfs knowing that there is nothing they can do to stop the pain, i stand banging my head against the wall hopeing to knock myself out so i won't feel the pain, I stand screeming asking god to take me, I ask my family to help me die as i can't go on anymore, then it starts to go but do i feel better do i hell because i know what is coming next, another attack.My love support and prayers go out to all of you around the world who suffer this barbaric and cruel disease and lets all hope that one day they find a cure and we can throw one of the worlds biggest parties.lots of love Michael, England.
Michael Johnson <papascank@live.co.uk>
Featherstone,Pontefract, West yorkshire United Kingdom

TY- I thought i was going insane - this nightmare started last Sept. and is just getting worse; 3 ER trips this week alone - finally at the last one, while being acused of drug seeking behavior by a nurse taking my vitals, the er doc walked in just as yet another attack hit full force- (you know the drill; Captian Hook comes for a visit- the eye won't open, tears, sweating, rocking, trying to squeeze your temple and eye back into your skull while trying to stifle the screams and willing to do ANYTHING to make it stop) 4 shots and 2 hours later a very apologic nurse listened while the er doc explained to BOTH of us what a cluster headache is ... So the insanity has a name. Now both my family doc and I are trying to learn to deal with it (she had never even heard of it!) and I am so glad to know I am not going crazy, I am not alone. Reading thru the site has been such a relief - thank you!
Terri <truckrowe@hotmail.com>
Aurora, Illinois USA

I've been living with a cluster headache sufferer for over four years and I'm just beginning to understand them. Well, not understand, but...you know. I'd like to hear from other spouses/partners of clusterheads. Our kids are now old enough to know that something's wrong with dad. Thankfully they're cooperative with the "quiet rule" but you can't keep a toddler quiet for long. As alone as he feels about his headaches, I feel just as alone in having to watch them. We all live in fear and lack of sleep.
JS <blip627@hotmail.com>
WI USA

I first got them in 2002, while I was at university. Funny how the one ironclad reason for not making the early morning classes is the one you really don't want. Went into remission until 2005, and now it's back in 2010. Well done. If one more person who suffers from seasonal allergies says to me "Oh, you don't understand" I know I won't be able to hold my fist back. You're darn right I don't understand, but I do understand something much, much worse. What's worse is that in Japan, where I live, cluster headaches aren't treated as "real" and countless doctors have told me it's "just stress". Sigh... I don't want to go to bed, because I know I'll wake up with the pain.
Ken dos Remedios <kenchany@hotmail.com>
Kobe, Japan

What a feeling to know I am not crazy. I have been suffering from CH's since I was 16, I am now 37. I used to lay my head on my desk and pray that it would go away. My parents didn't believe me. My mom took me to the doctor and they told me to make a list of everything I eat for a month and then follow up. I can't tell you how many times this occured from one doctor to the next. 5 years ago I went to a new doctor who asked me to walk her through a headache. I did and she diagnosed me CH. I take imitrex at the very 1st sign of one coming on and have experienced some relief. My doctor prescribes be 100mg imitrex tablets and has me cut them in 1/2 with a pill cutter, Usually 50mg does it. 100 mg tablets cost the same as 50mg tablets and you then have twice as many. With 3 - 4 a day during a cluster I need all the help I can get. I tried the pure oxygen, it did not work for me. I also tried the imitrex shots but they tend to put me out of commission for quite some time. If I did not have kids and a full time job to deal with this would be my option. I also fill a gallon sized ziplock bag with crushed ice and smother the left side of my face and head. I have cried, thought about suicide and prayed to God begging him to take away the pain. My brother alos suffers from CH's. May God Bless Us All!
Katherine Shepherd <shepkat73@gmail.com>
Arvada, CO USA

I have had clusters since 1972
Charles Ingram <cingram49@earthlink.net>
DeFuniak Springs, FL USA

I stumbled onto this website at 3 am, while I was in the midst of a what I thought was migraine. After taking the quiz and reading all this info I realized what I have been having is CH. Mayo clinic also has good information on CH. What amazes me is that I have been experiencing these headaches for years, and doctors have attributed it to sinus issues, or hormonal changes. The treatments I have read about this morning have given me new hope that maybe I can get this monster under control. I especially am interested in the oxygen treatment suggested. Recently I had a total thyroidectomy due to thyroid cancer so I am reluctant to take more medications if at all possible. Any feedback on how non-medicinal therapies are working would be very helpful. Thank you for being here,, and I hope my new friends will sleep soundly and headache free.
Penny <pneyn@yahoo.com>
saint paul, MN USA

Im new to the site And im jus glad 2 know that im am not alone and im not the only person in the world that suffer's from having Cluster headaces.... lol my family thinks im jus CRAZY and in need attention. But its an unexplainable pain that hurts so bad that they will never understand.. i jus PRAY 2 GOD 2 take the pain away and after about an hour its gone....jus to reappear while im trying 2 sleep.. im so tierd and afraid to sleep my medication dosent work at ALL...and my insurance sucks and wont cover many of the medications like oxygen!! that i need. but latley i've been drinking like 5 canns of coke a cola during the cluster n it easezthe pain a tad bit and cuts down the time of the duration of an attack..when i see the shadows i try 2 down 2 cups of coffee along with the caffine pills that ive been prescribed Im 29 yrs old and im a woman that has been suffering since i turned 18 yrs old... im sad cause ive recently found out that i will probably experience these attacks for the rest of my life 5 times a day dependen on the season...Im praying for a better understanding on y these Painful is not the word headaces, and also a cure and an over the counter relief so that i can hold a job without having to quit because of my attacks. glad 2 be here i need the support.. GOD help us all...............
Kia <kia_rod09@live.com>
Oakley, Ca USA

well, its been many years since ive been on this site, such a huge depression, been going through for three years now. 3 years ago the pain in my face were 23 hours a day. couldnt lay down or eat or sleep. ended up in the hospital for 7 days, they injected me with so much moriphine(every three hours or so)i dont remember beeing there hardly. I have had attacks since but have my oxygen now to abort the attacks. this is such a bad depression cause after getting the oxygen i started to remember wht hell i went through in highschool. i had no one and no one had me. i was so suicidal when i was 15 that i did something horrible and dont know why. everyday i told myself this is it next attack im killing myself. but nevr found the courage. now im scared that ill nevr be normal again, i think i have a permanent depresion from my past and knowing that of course their coming back. just wondering if anybody else in the world has done something so horrible because of the desperation this demon leaves in our lives. there is no going back. the scariest thing is always thinking evryday that when it does come back, if ever the oxygen stopped working, i dont think im strong enuff enymore to not kill myself. so depressed peace out
Allen Hall <juicebiggs@hotmail.com>
sudbury, on canada

Oh my @#$%. I can't tell you the relief I feel as I read your words. I've suffered fromt his hell for over 20 years. It wasn't until I was screaming in the middle of a hospital recently when someone mentioned "cluster" to me. Thank you thank you for all the information and just the acknolwedgement that I'm not insane!!!! for the first time in about five weeks I've tears in my eyes not from ice spikes ripping my brain apart.
Scot D. <scotderemer@gmail.com>
La Mesa, Ca USA

I had to look at this sight to see if there were any other women's names because I know this is more common in men. Although I fit all the symptoms, I still feel doctors doubt me because I'm not a man. As I scan throught the entries I see we all do the same thing and have little rituals and things we do hoping that this is the thing that works. I have been doing it for years. (I wore a football mouthpiece to bed for the first couple of years of my marriage thinking that somehow pressure from grinding my teeth was causing it. Ugh.) Anyway, Nortriptylene worked for me in preventing many many migraines. I don't think I could have survived my childrens infancy and early childhood without it. Now I find that after 9 years of using it, I think it gives me heart palpitations really bad and I don't want to cause permanent damage somehow. I have had cancer so I'm just sort of being careful. So now again I am in a cycle and trying to figure out what will work. Excedrin Migraine taken immediatly has worked in the beginning of a cycle and sometimes beyond. Throwing myself in front of an oncoming truck might also work.
Lisa <lombardo421@yahoo.com>
NJ USA

My name is Jaime I'm 51 year male. I'v suffered from Cluster Headches for over 30 years now . My pain is so bad that it has really taken a tole on my life. Especially when i was in the military {20+ years}. The military did not belief in missing work for headache. Right now iam in my sixth week of CH, thanks God is almost over. I hope.
Jaime <serranovega@yahoo.com>
PR USA

Why no mention of LSD or psilocin in your survey? I suffered episodic CH in May/June of '08, and have yet to experience any CH since then with irregular use of these and other psychedelics. I'm keeping my fingers crossed and a tab of acid handy, hoping for two straight cycles without CH. One two month period in my life was enough to never want them again, and going on research and my own experiences, the only treatment I wish to pursue right now for these nightmares is psychedelic treatment, yet your survey makes no allowances for those like me and thus doesn't include the full spectrum of sufferers.
Marc <marcpalan@gmail.com>
Littleton, Co USA

This site has helped me help my husband. He is in his second cycle and we are getting a handle on it mainly because we could use the information I've read here to get what he needs. We've seen some of the same roadblocks that I've read about, but his GP is working with us. I realize this is only the beginning, but I don't feel as helpless as I did a week ago.
Megan <MGH0315@Hotmail.com>
Rogers, AR USA

Hi everyone ive been suffering for three years now before the ch i would get migrains no big deal i would shut the light and go to sleep.three years ago i got the ch's and now im learning to deal with them. im in cycle now and the days are long the nights are longer. im praying for my remission. i found my imitrex injections to help. but i want to try the o2. i have three children and they see me suffer every year.this so called beast is the worst thing ive ever met in my life.looking forward to my pf days now and praying they come soon.This is a life saving site. And i thank god for finding it. and the ppl i have chated with cas now i know im not alone.to all you ch sufferers we are among the strongest ppl in the world. and we continue our fight against this beast.
paula <cpb4171@comcast.net>
new bedford, ma USA

Hello from South Africa. What a godsend! finally, after seven years of suffering from CH, I know and understand that I am not a freak! As I read the stories on the homepage, I realized that these guys are exactly like me! I've been suffering with the Demon for seven years now. Chronic. Nine neurologists here in South Africa have tried to help me getting rid of the CH, but without success. I even had a Neurostimulator implanted in my neck, but even that did not help. The last neurologist I went to, told me straight that there is nothing that he can do to help me, and I must live with it. Well, I am now trying to come to terms with it, and finally I found this site! Wow, thanks for that! As far as I know the Imitrex injection is not available in South Africa, otherwise they would have given it to me already. If someone knows where I can order it from without getting into trouble, please tell me! As far as I can gather it works. The only medication that I used before which prevented the CH for a while, is Cortizone. I had to take 30 mg a day to stop the CH, but the side-effects are not very healthy at all, and I was told to stop it. Of course, the CH took it's place in my life again! Thank you for this site. Now I know where to come to when I feel that suicidal urge entering my mind again! Regards, Andre
Andre <eckard@vodamail.co.za>
Pretoria, South Africa

The demon has came back.Feel free to email me
chad <c6071@charter.net>
Albert lea, mn USA

Hi All, I've been reading this sight for a while now and finally decided to join. After 2 strokes 4 mycardial infarctions (big word for heart attack) lol and 7 stents in 5 years I thought I've seen it all. Boy was I wrong! I started suffering from CH 3 Years ago and have gone from episodic to chronic fairly quickly.It seems I'm different from most sufferers as I rarely have an episode while sleeping. My attacks normally happen at about the same time everyday or at least close to the same time. Normally they last for between 1.5 and 3.5 hours. I like the rest of you have hung onto walls screamed cried and begged for them to either go away or when I could feel an attack coming on beg that it wouldn't happen. Usually no such luck. I feel for all of you and for your friends and family members as I've seen the look on my wifes face knowing there is nothing she can do. She's watched me die twice from heart complications so I know she has to be the strongest woman in the world!!! Hope I can help anyone out that needs it so feel free to e-mail me. Take care and I hope that if you have to have an attack it's a short one. Peace be with you all and take care
Richard Fuoco <km5wx@bellsouth.net>
Batesville, Ms. USA

im a 34 year old male ive been suffering with ch ever since 2003 i had to stop working cause i didnt want to get fired from calling out so much no one understands my pain they think im over exaggerating they think it cant be that bad but this website is pure proof
rodney <sitarajohnson@hotmail.com>
farrockaway,queens, ny USA

love this site guys!!! keep up the great work for all of us cluster heads!!!
Ryan K Scholl <kayleewalker@yahoo.com>
carlsbad, NM USA

Hi, My name is Lisa I'm 24 female. I'v suffered from Cluster Headches for alittle over 3 years now. I've yet to find any females with this problem let alone around my age. I know they are more commam in men. I would love to from other woman and their stories aswell. I've done tones of resech online about Clusters. My pain is so bad that it has really taken a tole on my life. Especially if I get an attack at work. Just recently I went to a differnt Neurologist. He was the one who said I do have Cluster Headaches. Which I already knew I did from all the information I found on the web. I just needed him to confirm it. He has given me all kinds of medicines. I've taken Sumatriptan wich made me very dizzy to even function. Frova, Keppra and a few others I can't name off hand. None worked for me! I kept getting headaches through out the day. Now I'm takem Maxalt which seems to be working well for me. But I can't miss a dose. or I will get one. I've been taking 1 pill everyday for about a month now. Not sure how long I will be taken them untill it cuts out the cycle. They are very expensive though. Alittle over $30.00 a pill. But my Insurance helps out alot. I would love to hear from everyone. Or feel free to e-mail me your story. lisahcivic@yahoo.com Thanks so much! :)
Butterflywings
Houston, Tx USA

my doctor thinks i have clusters. the pain is so bad i feel like crying. they started about 9 years ago.. the pain is in my temple on one side. they last about 30 days or longer and then just all of a sudden just like they started. i got a new doctor today cause im having them right now.he put me on sumatriptan today to see if it helps.i hope it does. if anyone knows what else helps when the pain is intense i sure would like some advice as what to do. thank you jerry allen
jerry allen <frankiemom02@aol.com>
lost creek, wv USA

Thanks for putting together this site. It is the most complete resourse I've found.
Dean Hill <desanhill@yahoo.com>
Warrensburg, MO USA

Hi,my name is Don and I'm a member of this Clusterheadaches.com. My heart goes out to all of you. Because our condition is so rare most Dr's have no clue how to treat them. So in your own interest you must educate yourself about CH (Cluster Headaches). The best information and help with dealing with CH is on this site. Go on the message board and read all you can, also go to the links provided. There's no charge, donations are accepted but not required. So Don't sit back and hope a Dr will fix you, help fix yourself. The info you need is on this website, go and find it.... Don (Skyhawk5)
Syhawk5
USA

Hello to All!! I am brand new to Cluster Headaches, I was working on compiling migraine information (2/11/10) for myself & my doctor & literally stumbled across some info about cluster headaches and was in complete shock at what I was reading, typed out in front of me in black and white!! I could have writen it, cause it was everything Ive been saying over & over! What an incredable validation! All the guilt I have been feeling for my wish that death will come & free me from this nightmare that has been my life for the last two and a half (plus) years. But two weeks ago, during my last extreme attack I could feel my will to be strong and fight this (what I thought were demonic migraines on steroids)I could feel the fight leaving me & I could not stop myself from dreaming of different methods of suicide.. I felt this way (suicidal) during my attacks before but usually after it was over and a day or two would pass, my strength would renew & my drive to get better & find answers would return. But as time goes on the suicidal feelings get stronger, my sadness and guilt for what my family must endure because of my illness, its become overwhelming, and I was finding more & more that even if or when I was fortunate enough to cross paths with another migraine sufferer, my migraines seemed extreme to me! I would nod and agree in sympathy at what the migraine sufferer was saying, but in my mind I KNEW that I was dealing with something different, I told my hubby "its like my migraines have become a viscious monster & grew sharp teeth!" And when I am under attack, that is what I picture in my head a sharp toothed demon, munching on the back of my eyeball, laughing hysterically at the medicines I would take.The fact that they are called "attacks" is also a funny thing. Though I thought was I was dealing with were migraines & had never even heard of CH's but I had started referring to the "migraines" as attacks more than two months ago, because thats how it felt, when I got hit with them SO fast & SO strong, it felt like I was being "attacked" so imagine my surprize as im reading the CH info & one of the many simalarities were the small fact that cluster headaches "ATTACK" just as I have been discribing to anyone who will still listen. The doctors at the ER (when I have felt a complete loss of control over my situation I have gone to the ER, but man I'll tell you, it is an extremely rotten thing to be in such severe pain you have to surrender to the ER trip, only to be met with a scepticsism that carries with it a large amount of judgement.) The doctors in the ER couldnt understand me. I didnt realize it until I found the CH info, but I guess its not a normal migraine thing to not want blankets, but instead crave a COLD enviornment, I would tell them, "NO, I CANT lay down!! It hurts TO BAD!!" And instead I will sit on the hospital bed and rock back and forth. If and when the pain begins to subside I can begin to consider laying down and imagine the possiblity of sleep. They didnt recognize me as a typical migraine sufferer, and so many times I have been treated as a drug seeker. Which is not only insulting, but also brings with it utter humiliation & the fear (AGAIN) that if these people cant help me, and I literally CAN NOT cope with the pain any longer, I end up back contemplating the only sure way I know how to excape, Suicide. It got so bad during and after my last attack, I have had to ask my husband not to leave me alone. I am scared, OF MYSELF!!(I had another first time experiance during my last extreme attack, which my husband witnessed. I was awoke from a dead sleep by the super strong raging pain, and I screamed at the top of my lungs NOOOOOOOOOO! My husband came from somewhere and was by my side. I was crying, sobbing & i started to ask him to take me to the ER, when suddenly, I passed out cold. Im convinced I fainted from the pain, I know I did. My husband said one second I was crying and talking and the next I was out. He said I looked to be sleeping but was breathing ok so he just sat with me till I came to 30 minutes later.) So here I was feeling truely scared for my life, searching the internet for any new migraine information I could find, and BAM! There it was!! The answer! Cluster headaches, aka suicide headaches.. From what I've read I would consider myself chronic.. Though I have found a way to get some relief, it seems.I started recieving botox for migraine treatment last summer, & after all the beta blockers failed to bring any preventative relief I began with amatriptalyne (I now take 100mgs). Once I got up to 50-75 mg of that IN ADDITION to the botox, I began to experiance my first pain free days in succession since my last pregnancy began (November 2007). I have made it up to two and a half weeks of pain free days in a row since I have been using these methods. But as i said I had NO idea these were CH's, and so my doctor and I are still seeking a better prevenative method. We just added neurontin 9 days ago, so we will see. Alot of my pain free days are what I had been calling migraine hybernation days. This is something I can experiance before OR after an extreme episode. I am not in massive amounts of pain, but I can feel it alive in my head (behind my eyeball, or on the backside of my eyeball) its like its in there teasing, & taunting me!! Saying "I'm still here! You can pretend Im gone but Im RIGHT here & I can come back AT ANY TIME I choose!!" I would try to explain this to my husband or doctor,& ER docs, but it wasnt something they understood & in fact I think they thought I was crazy!! But now I know my hybernating migraine is what is known in CH language as a shadow! The stuffy running nose, extreme heat intolerance, I also experiance extreme facial sweating during an attack, something I was having a hard time making sense of. (because I have been suffering from migraines since age 7-8 & facial sweating IS NOT a typical migraine symptom for me, much like some of the others I have been experiancing & reporting to my doctor. Like the fact that even though I was a migraine sufferer I was still able to go out with my hubby or friends and have a drink or two. In the past, I would only avoid it if I had had or fought off a migraine in the last 48 hours, otherwise it was fine. Obviously I didnt drink during my pregnancy, but once the baby was born and every since I have attempted to drink an alcoholic drink, and almost right away I break into the facial sweats & the headache begins. I CANNOT drink. lol!! I still "try" occasionally, and end up with the same result.Pathetic!)I would sit in my therapy sessions and say I feel like Im losing my mind!! Every SINGLE WEDNESDAY & WEEKEND I would have a "migraine" like clockwork, I'd say! How can that be?? Am I subconsiously giving them to myself somehow because I am "expecting" them now every week on the same days? I would wonder aloud to my therapist, hubby, etc. I would also complain that I felt like I would spend a whole day trying to get my pain/headache under control, only to go to sleep & have it start ALL OVER AGAIN! I would ask my doctor, Is that possible?? Can sleep bring on a migraine?? But mostley, I just felt crazy!! No one else I have ever met with migraines has ever talked about the things that were happening to me. So after that last extreme attack I began secretley skipping sleeping at night, in the fears that it induce another episode! I slept 5 hours in three days (short little catnaps here & there) and then the last day didnt sleep that night at all. Well, I didnt get any headaches, but my mental condition after missing that much sleep? Not so good! So again I am reading that alot of CH sufferers are attacked at night or while they are sleeping. Because I AM a "lifelong" migraine sufferer, I am just not exactley sure when the Cluster Headaches began. Or if I have had a combination of both for longer than I ever realized? I'm just not sure, but I AM SURE that just as I met the end of my rope, had begun to lose all hope, even my smallest hopes to find others like me, had began to fade when I "stumbled" across my diagnosis. And I am feeling really grateful to see that their are others like me! I'm not "crazy", the thoughts Ive had and the symptoms Ive been talking about are actually very NORMAL for cluster headaches. And while I am sorry for myself and all of you who are suffering with this debilatating condition, I truely believe my life DEPENDED on me finding "the answer" and all of you, and for that my determination & streangth feels renewed. Thanks for reading my story!!
Andrea <andreamstenger@msn.com>
West Linn, Oregon USA

hi'i'm 44 and have been suffering for about 25years,normally for 3/4 weeks every 2 years.started new bout 2 days ago,i've been reading some messages,can't belive i'm not the only one who bashes about wailing and crying,it's good to know i'm not alone. i'm dreading going to sleep tonight. god help us!
louise williams <louise0williams@btinternet.com>
bexley, kent england

my bother has been suffering from cluster headaches for several years. he doesn't believe he can go to college and become the lawyer that he dreams of being. are any of you out there professionals (doctors, lawyers, teachers, etc.) that suffer from c?luster headaches
joyce gordon
USA

Hello to everyone. I am a 25 year old male who has suffers from episodic clusters since I was about 15. I've tried so many different types of medications and remedies but as we all know, its almost always debilitating . The best 'treatment' that I have been able to use is when I feel one coming on not only do I try and drink about 2-4 glasses of ICE COLD water but I also place an ice pack directly on the back of my neck until I feel the pain subside. Other than that, I just try and get through a cycle without a trip to the emergency room.
Blair <blairmichael2003@hotmail.com>
San Diego, CA USA

WELL?....WHERE DO I BEGIN?.....Anyone who knows what this pain is like....will know what i'm talking about. It comes on....the flashes of pain....and when it's full force?...i scream and bitch....running cold water on my face....gargling hot water on the side afflicted....I've been to the chiropractor...taken all kinds of pain meds....sinus meds....what ever it takes to reduce the pain....nothing works....you just deal with it......can't stand any light in my eyes because it just kills you....i can't drink any alcohol....and by the way?...alcohol triggers a cluster attack.......sulphates (not sure if that is spelled correctly) in the alcohol are to blame for the onslaught of burning ass pain to follow.....don't drink alcohol people.......you will regret it. i've been dealing with these ...FUCKING headaches for 6 years now....and counting unfortunately. They started again a few weeks ago....before that it was two years before i had an attack....i thought i was clear.....i even had a tooth pulled because i thought it was causing the pain......of course...that wasn't it....so i now have a good tooth,lost to these....beast's. When will the medical community have a cure for this?....if someone knows how to reduce.....alleviate.....or get rid of these so called "headaches"....please,please...let me know!!!....i cannot take it any longer....i want to cut half my face off when it comes on.....rip my eye out....drill a hole in my head....something....whatever it takes to never have this again.... THANK YOU. FLOYD, A CLUSTER SUFFERER.
FLOYD LEE MULLINS II <floman76@yahoo.com>
UHRICHSVILLE, OHIO USA

I'm 39 and a 15 yr sufferer. I've moved around the world with work and have been with many physicians. Recently I moved to the US and had to find a new Doc. I told her I suffer from CH and she was shocked and amazed at my condition, her first. Wanted to send me to Pshyc and an Nurologist. I explainded that I understood my condition but she knew of no treatment options besides "quit smoking and drinking". I do cry when I'm at my pain climax. No hair pulling or head banging, but I grit my teeth to the point my jaw hurts for a day. Fortunately I now know I'm not alone. I thought for a while I just had a low pain tolerance when people said they get headaches. After years of research, looks like we have pain tolerance off the charts. I have not medicated besides Asprin, but does O2 work? Thats about as far as I'm going chemically. My clusters are about 8 months apart. 7:30PM sharp. Stacy
Stacy <stmulroon@hotmail.com>
Garden Grove, CA USA

After reading some of these other horror stories, relatively speaking, I feel a lot better. Hah! My clusters started about 1982, if I remember correctly. No one could diagnose them for about 15 years. Thought it was a sinus problem. When they happen it feels like somone is pushing a log-splitting wedge through the back of my right eye. They come about every 17-18 months. So there is a cycle, but I haven't been able to figure out what triggers it. The cycle lasts about 2-3 weeks. Early in the cycle, one a day, right always around 11:00 p.m. As the cycle progresses, I may have 2-3 a day. Then they taper down again toward the end. It's hard to describe to someone how bad they hurt. Without medication, they last about two hours, after which I am totally exhausted. Luckily Imitrex usually works in about 15 minutes or less. Oxygen is a little quicker. One doctor way back when prescribed 800 mg ibuprofen. LOL! 8000 might do something. Another, back about 20 years ago prescribed Nasalide, which believe it or not kinda worked. But now I horde Imitrex, to be ready.
JT <jtskarda@peoplepc.com>
Lakewood, CO USA

Although have had CH in the past, I have only recently been diagnosed a couple of weeks ago. Looking for a support group in Central Illinois
Pat Jablonsky <skypat@earthlink.net>
Springfield, IL USA

I have had cluster headaches for 16 years. I have tried to get on the site from my home computer several times but always during a cluster and could not get past the firewalls. I have been reading the site for years and cannot thank all of you enough for the information and encouragement you have provided. I suffered through the first @ 10-12 years without oxygen due to Dr O'Donell in Westerville telling me it was not a good option. Oxygen takes away 98% of my headaches unless I am in a high cycle. I have used Lithium, Depakote, Verapramil, Maxalt, Imitrex, Zomig and Topomax. Topomax, never again!!!! I prefer Zomig as I get a allergic reaction to Imitrex nasal and a combination of the other three as a preventative. In a high cycle sometimes I will use Prednisone just to get a break and get some sleep for a couple days. I typically get one cycle per year followed by a remission for 6-12 months. My cycles start and stop with the beginning and end of a season. My cycles lasted 14 weeks for the first 14 years and 7 months for the last 4 years while the remission time has lasted longer with the longer cycles. The last two cycles have started in September but have been very mild. In early January as they seem to be going into remission the remind me they can do anything they want and quickly go into a high cycle getting 3-4 kip 4-6 per day and 1-3 kip 7-8 with an occasional nine Thanks again for all of the support.
Steve Schaefer <schaes01@unisourcelink.com>
Westerville, Oh USA

Hi all, Ive been an episodic clusterhead for about 9 years now. My ch usually comes in the month with the shortest amount of light time and the month with the longest periond of light time. It seems my internal clock gets a little confused, goes hay wire and causes ch. I use imitrex injections and depakote. Thank God for the imitrex, its like a cool sensation seeping over my brain while washing away the pain.
micheal mcknight <msmibew683@aol.com>
westerville, oh USA

Hi, just found this site. Am 43 years old and have had clusters since I was 23. No-one could help or even diagnose clusters for over 10 years. I have them every 3-5 years so I guess it could have been worse. I am entering another cycle now and am practically having a panic attack as I write this. Called my Doc this morning to set up a cortisone injection in my neck. This has helped before, but I haven't tried it so early in the cycle. Keep your fingers crossed!
Nancy Brown <nkbrownart@gmail.com>
Gillette, WY USA

Hi I have been having clusters sence Oct 1998. the first 5 years i did a self med thing. then i let VA try there things. I tryed prolly 20 meds or more till i was offerd oxygen. 8 liters for 10 min. as of just last week im am alowed to use 2 leters at nite so i dont wake up with full blowen headacks. feel free to email me if you need to talk or want to know how to help deal with it. ty an God Bless
art <artcruthis@yahoo.com>
Protem, Mo USA

I am very glad a friend recommended this site to me. I felt quite alone before. Its nice to know on this siote we all know what its like to suffer with clusters..which are quite worse than just a single migraine.
Nicole Lenz <zefb3k2004@hotmail.com>
Calgary, AB Canada

I am 46 years old and I suffer from CH.I am looking for someone to talk to about it,but I don't Know how to use the computer. My wife helps me, so I can only reply back when my wife is available . Thanks, Robert
Robert Odo <marina.odo@hotmail.com>
Stellarton, N.S Canada

two and a half years of chronic Cluster headaches and hitting a tough point. Of late i may get several in a night wiyh only a few hours between. Even using Imitrex stat. Been to the ER twice this month. My poor wife. Anyhow Its time to try something different. My prayers out to you all. Happy New Year.
Mike <mdoyledds@bellsouth.net>
Kernersville , NC USA

hi there i have just finally found out that its cluster headaches that i suffer from, after 14 years of mis diagnosis..at first i was relieved that i knew what they were. but after more and more research i now feel like a turkey thats just saw burnard mathews grinning at him....i only found this out a few days ago, after 9 days of 8 attacks a day. i have some questions can any one help answer them...alan...
alan mason <stargazerz@ymail.com>
wrexham, gb

This is probably the most amazing site I have read regarding this disease. The devil claimed another victim. A 33 yr old man with an amazing son and an awesome girl friend... I wish we found this together and I didn't just stumble on it while I still torture myself. Remind your loved ones you love them everyday and stay positive. A cure seems unimaginable now.... but in my heart I know one day the docs will crack this case. By God they have too....
Robin <rpoirier4@yahoo.com>
RI USA

I am a 55 year old male and had cluster headaches for 19 years. After visiting many docters I was given Deseril. I took Deseril 1mg for 17 years after which it was withdrawn from the market in South Africa. When the headaches reached their peak during the later years Deseril did not seem to help. I had an attack every 3 hours. I under went 7 blocks of which one was sucessfull for 2 months. After Deseril was withdrawn from the market I was helpless as no other medication helped. My daughters visited the cluster headache websites and then only did I learn about various medication that could help but to get the right medication was a trick. I finally visited a Prof of The Universiaty Of The Orange Free State, who advised me to have the Stallate Ganglion removed. In April 2007 I under went the operation being told I was the 3rd person in the world to do it. The pain experienced after the operation in my shoulder, neck and arm was nearly as bad as the cluster headaches. The headaches stopped for 30 months and have now returned. I get 1 or 2 attacks a day lasting from 1 to 2 hours. I am taking Vascard (calcium channel blocker), Imigran (sumatriptan) and Predisone ( corticosteriod). However, I still get the attacks as the medication does not seem to help. I had a few Deseril which I had kept and taking 1 a day seems to help a little. I also drink energy drinks containing Taurine and drink green tea. I have once again tried everything and am back to stage 1. Is there anybody that can help me beat this terriable pain. handelsuid@ovk.co.za
Martin Hambridge <handelsuid4@ovk.co.za>
Burgersdorp, South Africa

Hi. My father has been suffering from cluster headaches for 19 years. I need help. The only medication which helped him was Deseril and it's not available anymore. The doctors gave him Imagran, but it doen't help him at all. Can someone please help me. If you used Deseril, what do you use now, is it working? Plese email me. Thank you. Carmen
Carmen <handelsuid4@ovk.co.za>
Burgersdorp, South Africa

The day after these clusters started killing me... i lost my faith in any kind of reasonable god.If there is a place of hellish torment... im there now, so there is nothing left for me to fear. I cant work a real job, i am stalked by this demon, and sleep... i dont think so. I did try mushrooms, it did work, but they are now illegle for me (yes, i went all the way to amsterdam to get this help)and they only took one year of these headeachs away. but im glad i found others who understand, its sad but its comforting also
Joseph Lewis <htowntrinity@yahoo.com>
Hagerstown, Md USA

i am 46 years old , and have suffered fron clusters since age if 18 , i have tried every medication known , but in recent years , i was led to oxygen , and it works , but headaches seem to re-flare more using oxygen , but they still stop ! mine usually come at onset of winter , on the right side , like a nail is being pushed through my right eye ! i understand everyones pain , and the fear that goes with ! every year , from 8 weeks , too 4 months ! God help us all ..... these headaches are crippling to me , as i am a carpenter , i wish i was qualified for a dissability ! Our gov't should help us ! we have a terrible malady ...get oxygen , and try to relax , walk during headache helps me a lil , but oxygen is my lifeline too relief! funny thing is , that even with oxygen at my disposal , i live in fear of these terrible headaches !
wallace <nailer_63@yahoo.com>
sheridan, AR USA

I am a chronic cluster headache sufferer for the last 19 years. I do not get remissions, my attacks are year round but seem to worsen in the humid summer months (I live in Vermont, so we have a somewhat short summer, not that it helps). I have been admitted to the hospital 6-8 times for the "Raskin protocal", which consists of multiple daily injections of DHE, Regulan, Benadryl, and steroids, with limited success. Currently I am using DHE injections at home, .5 ml, also with limited success.
Michael Mayo <mcm@vermontel.net>
Andover, Vt USA

I was hoping to never get on this page again. After a 2 year hiatus, the dance started again and this time it decided to get me on the way to Mexico on a plane for a long over due honeymoon trip. What I thought was going to be 7 days of relaxation became panic as I just happen to pack two vials of imitrex. Yes I use the little trick of partitioning out 2mg and getting 6 shots out of the two vials, but needless to say my wife worried the whole time and watched me battle beast many times a day during the trip. Sometimes I just has to fight it out so that I could make sure to have at least one shot left for the plane ride home. Now that I'm back state side I got the oxygen, the imitrex I stocked up on (expiration...yeah right...still works) and it's like coming back to a family reunion you really don't want to be at. :) Hoping you all have pain free days ahead. Hanging in there.
Rich Words <rg41349@yahoo.com>
Moline, IL USA

12/13/09. I had my first cluster headache two weeks ago at the age of 43. After 10 days of "oh my God what's wrong with me?" I went to a family doctor, he had me pegged in about 3 minutes. I consider myself dang lucky that I don't get one every day but that "pressure/tingling/throb-pulse is ALWAYS present. I was also able to determine that my 20yo daughter has been experiencing them for about a year. Her doctor in SE Michigan has yet to make a prognosis after six months. I am taking prednisone which seems to be helping somewhat. Unlike some of the heart breaking stories I've read here, I think (and pray) that the winter solstice has triggered mine as has many other documented cases, and my phase/periiod wil end in a few weeks. I guess I can only wait. God be with all of you and during your time of struggle.
Joe Kreft <jmkreft@yahoo.com>
Cape Coral, FL USA

I have been suffering from CH for many years but did not really know what they called. Thought it was my teeth, or something wrong with my left eye, or sinus issue. After MRI and sinus scan it was confirmed that I had CH. After seeing a Neurologist that tried 3 differant kinds of meds that did not work he finally hit on Lyrica which is working. Started out with 50MG twice a day and then to 75MG 3 times a day. It does give me some relief.
Bob <njredcoat14@yahoo.com>
Allentown, NJ USA

I am new to this EPISODIC/CHRONIC CLUSTER MIGRAINE. My head started to hurt like crazy, i can feel my temple 'pumping' blood or something. i have used tylenol but wont work. Please help me, i dont know what to do.
JOHAN SALARDA <j_ayvee@yahoo.com>
manila, Philippines

Hello, mine are back too, with a vengance. I have been living with these headaches for 24 years. Like so many out there it appears that Imitrex injections are the only thing that work. Does anyone know if a person can buy vials of the chemical so we draw up our own shots (possibly reducing the cost)? My wife and daughters keep me alive, please stay strong for your loved ones.
Nathan Anstey <n_anstey@yahoo.com>
Americus, Ks USA

I have not been on for abuot 3 or 4 years. Because! you know they just stopped, Thank God. BUT ! guess what there BACK. I juast had open heart 6 days ago and am home. sitting up in the chair noddeed off, When out of my mount came OH!NO HO!NO NOT AGAIN MY GOD.but it was the same what is the same? I started running around yelling NO NO NO. when it came to me about the HOT water I put it on full and put my head under it WOW! relife started.Thank God it was only for 45 mins. That was on the 8th today is the 10th sofar had two. I asked my heart doctor about if he knew about IT, he said no. I'M sure he will tomorrow. I THINK MY HEART IS DOING FINE. "I have not drank in 6 or 7 years.
George Sorensen <sorensengeorge64@yahoo.com>
jacksonville, fl USA

I had cluster and migraine headaches for years, as did my Dad before his death. A friend told me to take one Feverfew capsule, 400 mg's (100 to a bottle, from a Health Food Store, $9-$10 per bottle), every single day. I do. That has been 11 years ago, and I have never, not once, not ever, had another headache, cluster or migraine. God bless you all, as you try this.
Mary W <timber789@frontiernet.net>
Cascade, ID USA

Mother of sufferer.
Sharon <slj54@mail.com>
Lansing, MI USA

My daughter has suffered from these for at least 4 years. I finally diagnosed her myself after numerous Dr's could not. Please help me understand what's going on.
Sharon <slj54@mail.com>
Lansing1, MI USA

I have episode attacks according to my doctor and i have 3 O2 tanks, used imitrex the injection and pred. I did notice that taking fish oil pills and apple vingar with honey and water and more water helps me the most. My insurance won't cover the cost of the imitrex so i try my best to prevent them with these techniques..try them!
Joe <silva7740@hotmail.com>
Stratford, ct USA

CLuster headaches since age 7. Now 46 years old, terrible this year. It is interesting reading posts here. It helps to see that I am not alone. This pain is so bad even sadness is meaningless. Nothingness seems to be the only thing that has any meaning!!!
Mike <recycleplanet@msn.com>
New Orleans, LA USA

gday,im 38yrs and male,ch sufferer for 24 years, only instant relief is summatriptan,same as all you out there,been there tried that,im really feeling for all of you out there at the moment,black,white,male and female coz i really do understand what you are going through,great site,great support thank you...
cory <shellcory@bigpond.com>
echuca, vic australia

Greetings to all--hope you're pain free--a question for all you sufferers--I have been very fortunate for the last 2 years and have been cluster free, however the demon is back with avengence (I've had clusters for the last 25 years). What's interesting is I'm trying to quit smoking and began taking Chantix (a stop smoking drug)and the day after I started my treatment the headaches came back. My question: Is there anyone out there that heard of or has experenced the same thing? Comments would greatly be appreciated. Thanks all!! Keith
Keith Geldhauser <kjgeldhauser@cox.net>
East Granby, CT USA

I am 38 and have been suffering from these headaches for about 19 years. For about the first 8 I was told by doctors I had migranes or lacked water in my diet. It was about 8 or 9 years ago that a doctor at a walk in clinic described and diagnost exactly what I had. I guess it is fortunate that I have gotten my cycle which lasts 4 to 8 weeks every 1.5 to 2 years. I think I am at the end of a cycle now as the frequency of the most severe headaches seems to be at a lower rate. My problem is that I can not seem to get my spouse to understand the pain I go through when an attack occurs. I have tried to get her to read some information I printed off on the internet, but she never read it or never believed it. After an attack I am normally pretty tired and almost feel drunk, especially if I took an Imatrex - which only seems to cut the time of the pain not the level. I think it allows me to sleep for a half hour or so until the next wave wants to come in. I think I have slept 8 hours 2 or three nights in the part 2 weeks. How do you make people close to you understand?
Karl Schumann <kschumann@octagoncap.com>
Toronto, ON Canada

I was told of my cluster headache problem about 6 years ago. I suffered from them for about 2 or 3 months and they went away as quick as they came. Now 6 yrs. later i think they're back. They started about a week ago and now it's every night at the same time. On the left side of my head, a little abopve my eye. My left nostril gets congested and my eyelid droops. Same as last time and there's nothing i can do about it. Found this web site during the last round of CH and came back to it to find my old post. Hope this episode doesnt last as long as the last one!
Ed Pigate <jpigate002@sc.rr.com>
hartsville, sc USA

A relief to read you all (again). 18 months free; They are back...: Those 04h30 wake up "calls", the O2 at home, the Verapamil&prednisone; cocktail, the shadow pain, the misunderstanding from your entourage, the fatigue and the constant anxiety of another unexpected "hit" throughout the day are souvenirs and the reality (again)... And the big question : Why?! For all of you living it, my thoughts are with you. Hang tough! Martin
Martin L <mlemay2008@gmail.com>
Gatineau, Qc Canada

I am just coming down from an attack. I first had attacks when I was a teenager. No drugs helped. I remember kneeling on the floor with my head buried in my Mother's lap and her massaging my neck. They were clusters (as I now know) and I had one at least weekly. Then in my twenties, the attacks disappeared completely til now. I'm 48 years old. I'm glad I found this website, as I do not want to go through the pain I just did again. Ah,,,memories of my youth!!! lol
Terry R <tbone_13@sympatico.ca>
Simcoe, On Canada

I am a sufferer since April 1993. I have been put on every med know to the migraine family in the past 16 years. Personally, I have the best Neuro in the world because he listens and is open to suggestions. For the past 8 or so years I have become cronic and it really sucks! If I am not visited by Satan himself everyday at least once...I had an awesome day!!
Rick <papasmurf_1967@att.net>
Memphis, Tn USA

I've been a Clusterhead since 2000, right when I turned 20. At first the doctors thought I had a brain tumor; but when they realized I had Cluster Headaches I was given high blood pressure pills, some migraine pills and a diet so awful I lost almost 50 pounds in 3 months. Since then I've had episodes every year or every two years. It is the worst nightmare ever and every time they get worst to the point that I've banged my head with the toilet seat or to a concrete block wall. I am very grateful to have a great partner who tries so hard to be with me in every episode and it helps to move me around the room in order for me not to trip or to pressure points in my back that lower the intensity of the pain. Other things that help sometimes is to take a big sip of ice water and leave it inside the mouth in order to get the area numb and to breath heavily pure cold oxygen/air. Besides that I can just hope every day not to have one until they go into remission until next time. I wouldn't wish this pain to anyone, not even my worst enemy. I'm glad that I found a place were other people fully understand what I go through. Maybe one day, someone with power in a pharmaceutical company will suffer from this pain and will move labs around to find a cure or at least a real medication. Keep up the good work and thanks for the support.
Gilbert Broco <g_broco@hotmail.com>
St. Augustine, FL USA

It has been a long day for my sweetheart Bob who has been having clusters every hour for the past 4-5 hours. I feel so bad for him and would do anything to help him with his pain. This is a needed website and helpful to many sufferers. Thank you for taking the time to put this together. Tami
tami Kelly <tamikelly123@gmail.com>
mill valley, ca USA

I am VERY glad that I have come across this site! My new doctor has given me a referral to the neurology department, saying it appears I suffer from clusters. Reading your site I have found many stories that coincide with mine. I have been suffering from this migraine since early August and it is early November. Have only had 3 days without it. When it is in full swing, my left eye is bloodshot, ugly, and cannot be touched. Does anyone else have red eye? Have had migraines like this for over 20 years and am now 43. Plus now have high blood pressure.
MichelleP <serenas-favorite@cheerful.com>
Kansas City, MO USA

I just read comments of Jess from N Ireland who faints due to the pain. Thankfully I don't get that - and I feel for Jess and anyone else who does - but it reminded me of something I do experience. Hard to describe, but when I'm in the throes of a bad one, in addition to everything else, my body sometimes seems less reactive, kind of out of it, a general physical malaise, like a neuro slowdown, delayed reactions, unresponsive or delayed neuro transmitting, misfiring synapses. Not looking for a med dx, but can anyone shed any light on such feelings? Thanks
Jim
USA

I was on the site once before, several mos ago, just read thru much of it again... Esp that first time, an Incredible experience to see that so many others know what you go through, to learn so much more about it, and especially to read symptoms and experiences of other sufferers and say to yourself "yes, yes, yes, yes, yes - that is exactly what I experience". The range of possible treatments, most of which appear at best to give some relief to some, is staggering. I'll give my neuro credit for accurately diagnosing it pretty quickly, at a time when I felt I must have a tumor or something, but beyond that he seems pretty clueless. If I want to get serious, does anyone have any recommendations for doctors in NYC / L.I. area who actually Know and regularly treat cluster h/a s? Any recommendations would be appreciated. Had a nice period of remission thru the summer but they are starting to creep back. Best wishes to all, and thank you to those responsible for this site.
jim <nylawyerone@yahoo.com>
New York, NY USA

To all the sufferers, wives/husbands, families and friends: I'm 39 years old and I've been a Clusterhead since 19. During all those years I honestly thought that I was alone when all the doctors I visited diagnosed Migraine having to take very strong useless medication that didn t work at all. Thank God, a couple of years ago I found a Neurologist whom was the first and only to tell me a completely new everything which were the words Cluster Headache. I felt an amazing relief just for the fact that someone at last told me what was wrong. Then after I was able to start doing some research and get to learn more and more about this syndrome, to the point that I found this site. I'm so glad to know that there are more people like me around the world and will never again feel alone. I m just hoping for all of us (sufferers, clusterheads, wives/husbands, families & friends) that in the very near future Scientists will start putting more input, effort and resources trying to find the real cause of this syndrome and the final cure although in the mean time we ll remain suffering as always because, what else can we do??? I would like to thank you all and this magnificent site because you all gave me hope and a different perspective to look at the future. Good luck Pere Isanta
Pere Isanta <pivcat@hotmail.com>
Girona, Spain

I have been a sufferer since 1999. I had a reprieve for 2 and 1/2 years and the beast is back. Its not that bad this time , only one a day and not as intense, but painful non the less. My heart goes out to all that suffer this. The only relief for me is an ice pack directly on the area of the pain or a hot then cold shower running the water on the right side of my head. Only my family and close friends understand my pain. Others seem to say, oh I have had migraines I know what it feels like. I just chuckle!
Benjamin <bennystpete@yahoo.com>
St Petersburg, FL USA

I want to thank everyone for their comments. It really helps getting through this knowing I am not suffering from a misdiagnosed brain tumor. I too have dealt with cluster headaches for many years. I started out with motrin with no ease of the pain. eventually my dr. prescribed zomig witch worked wonders but only lasted a short period of time before the devil will breakthrough. I am currently taking summatriptan and verapamil to ease the pain. I can go about 6-8 hours headache free so far. If I wait to long to take the triptan, my headaches will last at lwast 2 hours. I have spent many days and nights hanging over the bath tub with the cold shower running on my head. this helps tremendously when I am at the point where I feel as though I am going to pass out. Cold water and ice packs seem to be the only things that helps relieve the pain. I have heard about the shot for many years now and for some reason I have yet to receive it. ER always refuse to give it to me. For those who can tolerate the cold when having a episode, try running the cold shower on the point of pain. it numbs the area and the water running is theraputic.
lucious <luciousm75@yahoo.com>
providence, ri USA

Has anyone tried ZOMIG? It seems to cut the "fun" down to about 30 minutes vs. an hour plus. Thanks
David <ddachis@shaw.ca>
Calgary, ALB Canada

Howdy, I'm 64 years old and was a chronic cluster-head for 14 years, and then they just went away.....for 25 years. Now they are back but this time they showed up right in the middle of my dealing with diabetes and heart disease. Needless to say dealing with leg pain nueropathy and clusters at the same time is challenging. The only worse case scenario I've heard of was from a doctor I met in LA while at Dr. Kudrow's house of "pay me $500 and I'll use you as a guinea pig in my cluster headache research". The poor guy was from Kentucky and had a headache while passing a kidney stone.....OUCH. There are lots of stories, I am just grateful for this site. Back in the day, there was no internet and support groups didn't exist.
Dave Wood <woodtnd@yahoo.com>
Seattle, WA USA

I have been having a stabbing, burning pain on my left side of my head for a year. My headaches started out of nowhere, I thought I was having a stroke. No meds that I have tried help. The last med I took (Topomax) pushed me to a dark place I never want to feel again. I was diagnosed with migraines, after doing my own research I believe I am suffering of cluster headaches...I just wish I knew exactly what s going on so I can treat it better. My headaches have ruined my life so much that I feel that I m loosing my family to this. Plus I m tired of everyone saying that I m stressed and depressed the only depressing thing of life is the pain and not having someone understand me.
Paula <pldavila@yahoo.com>
USA

I am 32M and have been suffering from CH (probably as it is yet to be confirmed by doctors!) from almost 10yrs. It usually comes once in a year and stays for 1/2 weeks, so didnt bother much and stayed with pain till now. One of my uncle also has CH and so i should have got it! Till now, i have been kindof managing the pain and now feel (after reading all this) should go for oxygen.. atleast its harmless. i always thought its the weather change which triggers this.. probably!
Sid <sify.email@gmail.com>
London, GL UK

Hi all, I am a chronic sufferer, and have been on verapomil for almost 2 years now. I got to say it was magic 2 years without pain. However, last month I started to get breakouts. Mostly with the drastic weather changes, mostly before rain storms. and nothing helps. I double doses of Verapomil, without any luck. I am affraid I am becoming tollarent towards the action of that drug. For those how have not tried it - DO IT ASAP! it worked like MAGIC for me. over 95% of clusters were gone. and the ones that were not gone, I could manage. Good luck to all of you and god bless
Erkin <gtcrunk@hotmail.com>
Ottawa, ON Canada

I have just been diagnosed with Cluster Headaches. Had them for 6 years and did not know what they were, Doctors and family said it was migranes. But now I know having been to a nuerologist and researching sites, I know what I have. I never knew there were so many other sufferers, nor that a website was dedicated to their suffering and tips on how to (Attempt) to make it better. To all the Doctors & Scientists out there! Please, Please for the love of God find a cure! Get on it now! Spend some money, lobby the goverment, let Gordon Brown have a bout of attacks and see if it gets dealth with then! Thank you to everyone who has posted on this site. I'm sorry for the agony you have to go through daily, but am glad we are not alone and can support each other if we need to. Good luck! JH
John Hall
London, Britain

I've been taking Zanaflex for about six weeks now,,,No Headaches. My neurologist had a talk with me and we determined my shoulder muscles were cramping and contributing to my attacks. I normally have really bad pain and multiple occurences for a few weeks then shift to less intense and frequent ones for months. My shoulders(upper back muscles) are always sore during my cycles but the Zanaflex stopped it almost immediately. Don't know if this will prevent future cycles but it is the best I've felt in years. If there are two different types of triggers then at least one is now over(I hope). I still take Verapamil and now Zanaflex daily.
Jim Davis <james.davis@med.ge.com>
Danielson, ct USA

It's pretty comforting to actually find other people that can understand what I'm going through. For the past 4 1/2 weeks I've found myself trying to explain to friends or family how these headaches feel and how they are negatively affecting my life and I always pretty much get the same thing..."Oh yeah, I suffer from migraines too, I know how you feel." No you don't!!! I've been walking feeling like people just think I'm seeking attention, or that I have absolutely no pain tolerance and I'm sure all of you can agree that we have a HUGE pain tolerance. A medical supply place iscoming by to set me up with oxygen today and I'm praying that it will help with my next one.
Natalie <nataliemk2@gmail.com>
Mars, PA USA

I have had cluster headaches since I was 10 years old. I have tried every kind of medication possible. Nothing has helped until this time. The Dr. had me try Treximet. It is a new medication. It works very well. If I take the pill at the first sign of the headache the pill works very well. Pain will go away in 10 to 30 minutes. The medication does have some very bad side affects but I feel they are worth it compared to the pain. Have not had any side affects yet. Just read about them. Good luck
Rodger Richerson <rricherson@hotmail.com>
Lodi, ca USA

I am soooooo sorry for those that are in a cluster right now. I have thankfully been cluster free since 2003. (thank you baby Jesus!) I had 2 cluster periods before they final told me what it was. I was excited that I actually had a name to the pain. I was tired of them telling me that it was a sinus issue. Being female it was had to get a doctor to understand the pain level. Since the pain occured usually 1 1/2 hours after falling asleep I was SOOOOOOOOOO afraid too sleep that I learned too funtion on little too no sleep at all. I thankfully have not had them in a while and thank god daily for that. Unfortanatly since they seem too run in families my baby sister was resently told that is what she is going through. I guess too a point I am glad that I do have them because I know how awful it is too have a doctor poke, prode and test just too say "sorry I have no clue". She was able too talk to me, tell the doctor what is going on and let them know that there is a family history. Unfortanatly hers seem chonic and don't seem too end for very long at all. I thankfully had about 3 years between cluter periods. They lasted 3 months but didn't happen as often as hers. God bless you all and I hate too remember the pain but I can't forget it. God forbid i even get a sinus headache because that alone will put me in a full blown panic that the clusters are back. I wish u all well and wish u all a day without the beast.
Karma <kslater72@insightbb.com>
Evansville, in USA

I have just discoverd a name for the nightmare of my past three weeks. I though I was having post surgery migraines and was really having difficulty with the nightly suffering, it's not pain it's suffering. My doctor(ear surgeon) presribed summatripaman(?) and it helped but then she wanted me to not take it and take aspirin twice daily instead. Didn't work and that meant I had to suffer through the entire headache waiting for the medicine to work. I ruled out root canal from the dentist and have an appointment with my general practioner today. I live in fear of the next attach (some at 4pm most around 8pm)My family is supportive but its destroying the quality of my life and that of my family. Now that I have a name for this I have the hope for a solution. One question: I never had a headache before, received ear surgery and then was put on steroids for six days, when I quit the steroids the headache began. It seems that there must be some organic relationship???
Joe H <hanlonj@pearlriver.org>
Maplewood, NJ USA

My husband has had Cluster Headaches for over ten years. At first they would come periodically. Then they started to show up twice annually, Fall and Spring. When the doctor ordered Oxygen for him this seemed to really help for quite awhile. Then he didn't have any episodes for over a year. When they started up again this past June they returned with a vengence. He is still having them multiple times through out the day and night. He has now received a RX for Sumatriptan injections. They seem to really help. The only problem is that you can only receive them minimal times per month. It is heart-wrenching to watch someone you love to be in such torment and not be able to give aid. I worry all the time about him. Everyday I wonder if today will be the beginning of the end. Will he go into remission for awhile? One can only hope. I'm not a religious person but recently the stress has been overwhelming and have started to hold on to an old rosary I have. I keep hearing, my husband upstairs turning on the oxygen. It looks like it will be another long night. He is worn out but still manages to go to work every morning. I wish there were some true concrete answers as to why he has been afflicted with this.
Barb
Prospect, OR USA

I've been a CH sufferer since age 16ish,age 41 now. I was finally diagnosed last year at the end of my 6 week cycle.this site is fabulous! wish I had found it sooner,no one ever knows what your talking about when you try and explain what this cluster headache hell is all about! I thank you!! weell, I just started another cycle and am on preventive meds for the first time....Calan40mg three times a day. wish me luck! I'm going to need it! afraid for night to come...
Helen <maggio511@aol.com>
Sound Beach , NY USA

Hi. lucky to see this site. I am now in bout.I can not help it. I am learning English for taking my mind off my bout.
Nob <chiwata@nn.iij4u.or.jp>
Japan

What a magnificent site. I read about Red Bull being used to abort an attack and have tried it, I am very pleased t o say it helps. It has brough the time down from 1,5 hours to about half an hour. Thanks again.
Paul <pjjm@vodamail.co.za>
Jjohannesburg, South Africa

Just started another cycle. Hope this helps someone out there:- Prof Peter Goadsby: http://www.ouchuk.org/html/news/PGConTrans.pdf
Tone
UK

new to this sight!thank God i have found others with the same pain!not that this is good,but what is good we can share with one another and know that we are not alone!i have had clusters for over two years now!woke one morning to the demon!thought iwas dying!!! i had to crawl from my bed room to the living room to let ER in to get me to hospital!i have been on differant meds and none have worked!i am now about three months for this round!back to the doc on 2mor to c what they will do next! my heart goes out to all i have read about,JUST KNOW THAT U R NOT ALONE AND I WILL PRAY FOR U ALL! its a relief to get this out to pepole that understand!thanks and i Pray that we all will be SET FREE FROM THE BEAST!!!
ms chris <christine1429@at.net>
louisville, ky USA

Hi, I'm 15 and have had these headaches for 4 years!!! They're hereditary in my family!!! 2 of my aunts have to take injections from the doctor when they get them!!! My dad & I take painkillers and hope to god they work!!! I was suprised there was so little people who are this young and suprised byt the amount of females who have them!!! I just got diagnosed with them today but I've known I've had them for one year!!! Before I thought they were just BAD headaches, before that I had severe headaches for several years!!! I just got into a specialist who knew about them!!! :) My headaches aren't very bad, yet!!! They'll only get worse as I age!!! :( I thank god I found this site!!!
Christi <cjk_lol@live.ca>
Barrie, ON Canada

Hi All!! I have been having periodic attacks for the last 15 years now - some "dealable" with, and others just madness...as I am sure everyone who gets them will nod their heads in agreement with. I consider myself lucky that my "cycle" is about every 2 - 3 years and lasts for 3 - 4 weeks. The attacks can be as amny as 5 or 6 a day to only once a day, but the sure thing is, they all start off in a manner where you think you can cope, but by the end of it, you are pulling out chunks of your hair and it isn't giving a damn thing in relief. The best and quickest relief was found by accident, when I took myself to A&;E here in Dubai, as I was in such agonzing pain. The ENT guy they sent me to see didn't really listen to any of my story and shot off on his own tangent, and after looking into my right nostril (I have a very deviated septum - broken nose 3 times playing rugby...), he sprayed Lidocaine (or a variant thereof) onto a wad of cotton and rammed it up my nostril with a little metal rod...about 3 times!! Although I was literally about to kill the man for doing so - particularly that he didn't LISTEN to what I was trying to tell him - as it was excruciatingly painful, especially with the attack in progress, within 2 minutes the absolute, wonderfully rapturous relief that I felt was incredible!! I sat back and opened my eyes witout any haze or pain and suddenly all those little noises that had felt like jackhammers drilling into my ear drums, just started disappearing into nothing, and the world was suddenly a place I wanted to be a part of once again. The little ENT man, then started enquiring about my nose and nose bleeds etc etc and I stood up and started walking to the door. Very shocked, he jumped up and wanted to know what was going on. I simply told him that he had cured the pain I was in and I didn't want to continue to talk to a doctor that wasn't going to listen to a word I said. Very disgruntled, he sat me back down and actually listened to why I was there, and went onto to actaully have a good think about the process/"quick cure". At the end of the day, I knew I hadn't found out anything radical or exciting, and the biggest gain would be the stupid ENT dude who actually might have taken something away to chew on...and will be more in a position to help another person if they come in with similar problems. If I feel the attacks coming on in a mild form now, I immediately take 2 Cafergot tabs, and a large galss of room temperature water. This usually brings them into a bearable ride, and after about 25 - 30 mins of being quiet and in darkness, I'm good to go. If I ignore the first signs, then I'm in trouble and it's usually 40mins to an hour and nothing I do will help...apart from take myself away into total darkenss and total quiet...and cry and try and squeeze my head hoping my eyeball will pop out and I can get at the thing that is causing my misery. Is there a link to anyone that gets cold sores to people that have clusters...? Same nerve is the culprit...?? Good luck to all us!! (Suicide Season is just about to start with me...I felt the first signs coming on yesterday and today - and the time of year is about right too...) I had a pain free last year but got whacked by the devil the year before quite badly...
Curly <curlydavidson@gmail.com>
Dubai, United Arab Emirates

Thank you
Stefano <stefanobertani67@hotmail.com>
Manchester, England

I'm sick to death of my head hurting, the throbbing, pain behind my eyes, being sick and feeling I have no engery at. I'm ready for bed at night, but scared and dread the morning to come. This is day 3 this week. Two weeks ago it lasted over one week. Can anyone out there help me. My meds are not working. Its nice to know there are some answers out there for us all. Thanks, Shannon
Shannon <shannonkmcduff@yahoo.com>
Lorenzo, tx USA

I've been suffering this type of headache since 1988. Love the website! Actually cried after knowing I wasn't alone. I still can't seem to get registered, though. Thank You for creating it! I currently take depakote(for almost 20 years now), O2 and just started treximet(at onset). Have appt. with specialist in Oct. Thanks Again.
Daniel Gordon <g27danny@yahoo.com>
Ellis, kansas USA

wow i have this head with a pain my dr called a a cluster head ache . migraine have been with me for years . now this . all of a sudden . i thought i was dying. i am 52 yrs old with a 2 yr old daughter . i caint read thru this site reading gives me eye strain . i do need some one to chat with iam sure my wife needs the same . yall reach out if you can we would apreaciat thank you . from the collins familey we love you all god bless
bob collins <bikerporkchop@aol.com>
onalaska, rexas USA

Very nice site!! Thx!
Sebastien Dube <bastium@hotmail.com>
Sherbrooke, Que Canada

Wow.... Let me start by saying that I do not suffer from cluster headaches but I am in a relationship with a man who does. We have been together for 1 year and a half now and recently this year finally got to see a neurologist who knew this condition and finaly diagnosed him with this disease. When I read comments left by people, it's not easy for me, since I see my man in pain litteraly everyday, laying in bed holding his head or walking around trying not to put his head through everything he sees. It's a difficult situation concerning that no one really understand why this disease is caused, or how to cure it. My boyfriend has been suffering from these headaches on a daily, since he is 17 years old. He is now 23 and still gets headaches pretty much everyday. He tells me, a day he doesn't get a cluster headache is a blessing and a good day. I just hope that this site can reach enough people to do something about this outrage. I do not understand the pain that my boyfriend goes through, and I feel helpless when he is moaning in great pain, sometimes he likes me to touch him, sometimes he doesnt want to be touched. It's difficult for me to see him in so much pain. I hope that the cure for this disease is found, or that more specialist pay attention to this condition more to help the few people affected by this disease!!!! To everyone who has this disease, stay strong... There's people out there who knows what you are going through!!
Marie-Claude <marie.claude.sabourin@hotmail.com>
Sudbury, ON Canada

hey. ive just found this website while browsing through. ive just recently been diagnosed as having combined migrained and cluster headaches. im 16, falling behind in school and hate the tell tale pain coming over my left eye which signifies the start of one of my attacks. my body responds to the pain by fainting and ive collapsed several times at school and abroad. was wondering if anyone else here faints as well. am so glad ive found a site full of people who know what it feels like. people at school look at me as if to say its only a headache dude it'll pass.
jess16 <jesszipxx@hotmail.co.uk>
northern ireland

My head is hurting, it hurts so bad been having these for about 3 weeks now waking in the middle of the night in agony, no one that understands the pain im dealing with feel like i want to die, that would be nice no sleep in days it hurts. nose running eyes pooring tears voice is gone from screaming into a pillow even when there gone my head still hurts, and the fear that they will come back is always there dont know why i fear it caus they are definatley gonna come back should just embrace it. cant embrace hell. this one might be going away yeah right just when you think its gone its back to terorise you again. hands trembling arms shaking rocking back and forth nothing helps no one around can understand until they have one or two or three, even then they still dont know hell i dont even know i just know it hurts
robert turner <tintddy@yahoo.com>
las vegas, NV USA

Every time I log in to this site, I breathe a little easier. After 23 years of dealing with CH, I'm still hoping, still trying. I think everyone here will attest to the moments when you aren't sure how much more you can take...the pain, the waiting for the pain...I get tired. Even though I would never wish 5 minutes of what I go through on anybody, I can't help but be grateful that I'm not alone in a world that just seems to not get it - sometimes from the people that are supposed to care the most. Thanks to all of you who share of yourselves on this site. I'm here.
Asia <asiarainey@gmail.com>
Gretna, LA USA

I am a 50 year old FEMALE who has suffered with CH for 30 years. They started off as once a year and as I aged they became more often I have read a good bit of the information on this web site. Most of the medications listed, I have used, including the oxygen. At about age 37 they were so bad for so long that my dr. advised me on an experimental procedure called the Gamma Knife.(precise radiation to the cranial nerve) It did not last. I got my picture on the front page of the news paper though! I started pre menopause at age 42 still having severe bouts. After age 45 they completely stopped. For 5 years I have been headache free and passed through menopause (if that is possible). Unfortunately about a month ago I woke up at 2am with an onset. The are not every night. I was lucky I had Imitrex injections left, although I was told not to use them because they were too old. Well, we all know that we will do what we have to to get rid of the pain. I had really thought that I figured it all out, hormones! I just was excited to see this sight. I have suffered in silence(except for family and friends who have had to endure the hell of putting up with me)for so long that I really feel for all of you! No one knows what you are going through except us! Not even the doctors!
Dena Myers <myers05@bellsouth.net>
tallapoosa, ga USA

Hello, Hey Guys. Right now, I am on sick leave from work, AGAIN. I'm 31. Been having these things off and on since I was about 11. So I been having them for about 20 years now. A true clusterheadache veteran at a young age. I never knew so many people suffered from this crap. After reading all the messages from you guys in here, I felt better, and WORSE, at the same time......these are the worst pains a person could ever have. Unbelievable. The hardest part for me I guess would be back when I was in school, and there was no Imitrex injections to take, i wasn't diagnosed yet, no verapamil to take, and I had to suffer each headache in class and put my head on the desk. My heart goes out to all of you who share this terrible horrible pain. I know what you feel, i feel it with you. Do not feel alone, I totally empathize with you. Mine is on the right side of my head, always starts out really small....you know the rest...
Lawrence Latiker <TheL927@comcast.net>
Merrillville, IN USA

Hi Everyone. I started getting clusters about 23 years ago but I've been pain free since 2003 - over 6 glorious years. I was the same as the story on the front, crawl around, rock, bang my head against things, wishing for death. Doctors here in Calgary, Alberta didn't know what to prescribe me and I'm sure I just sounded like a lunatic. It's really hard to describe the pain when you're not in an episode. They lasted 20-30 minutes, almost every night for 2-3 months and then gone for a year or so. My last batch of clusters - in the spring/summer of 2003 I tried massage therapy. The Massage Therapist guided me to a muscle in my neck, travels from the back of my jaw and down to my collar bone almost. She refused to massage it as it's extremely sensitive and possibly dangerous - but I have since found a new Massage Therapist that will work the muscle. My "side" is the right side but every now and then my left side feels like it's seizing up. If I feel an episode coming on - which I have in the last 6 years, I gently - very gently massage this muscle and bingo. Gone. I don't know if it'll work for anyone else. I hope so, even if it helps one person. I'm just so very grateful that I found what worked for me. I wish you all pain free days ahead.
Tara Pomrenski <tarapomrenski@hotmail.com>
Calgary, AB Canada

im in a episode and i need help. ive entered the group but it takes time . how do i talk to someone now pplleeaassee help now.
tommy <kmckinney@dishmail.net>
chester, va USA

Hope to see the fourms back soon after registering last night. Glad to see a website dedicated to our condition and hope to be able to help out.
Stewart <no@sp.am>
Glasgow, Scotland

Thank you for accepting me on your site as one of the sufferers.I'Ve only been diagnosed 3 days ago and am glad I have the diagnosis as I thought I was really mad whenever I went to see my GP he seem not to understand what I was talking about.Am really glad am not alone and can share my experience with others as I already have suffered a lot on my own.
khukhu mnisi <mnisikhuks@yahoo.co.uk>
birmingham, uk United Kingdom

Hallo friends. I'm an episodic sufferer 20 years. I'm a doctor in ICU department. I think the only medicine is Oxygen, but sometimes a cup of double espresso coffe or double greek coffe helps me at the beginning of pain.
Fabio Giardina <fabio.samos@yahoo.com>
Samos Island, Greece

I am a 33 yr. old native american female. I started cluster headaches 5 years ago. Frustrated, I went through migraine and tension headache meds the first year. Thank goodness, my current doc discovered my diagnosis. I just got the headaches during winter, and prednisone worked along with vikadins help. However, this year I got an onset when summer started. Prednisone isn't working this year, I'll see what my doc says at my next visit, soon. I read over other's comments on this site, and I too was moved to tears (unexpectedly), knowing and sympathizing with the many worldwide. Support equals hope, and hope, success eventually. Thank you.
S. Estrada <sestrada@crestviewcable.com>
Madras, OR USA

Hello I have been having cluster headache cycles every couple of years for the last 15 yrs, usually in the summertime. I recently found a trigger that I was unaware of and that is nitrates in food like bologna, bacon, ham etc I did some research and found that Nitrites from food and water hinder proper oxygen transportation in the red blood cells. Once in the blood, nitrite oxidizes iron in the hemoglobin of red blood cells to form methemoglobin, which lacks hemoglobin's oxygen-carrying ability. I believe this can trigger blood vessels in the brain to dilate blood vessels which creates pressure on the trigeminal nerve, also known as cluster headache.
doug <dougster33@yahoo.com>
wichita falls, tx USA

Nitrites from food and water hinder proper oxygen transportation in the red blood cells. Once in the blood, nitrite oxidizes iron in the hemoglobin of red blood cells to form methemoglobin, which lacks hemoglobin's oxygen-carrying ability. I believe this can trigger blood vessels in the brain to dilate blood vessels which creates pressure on the trigeminal nerve, also known as cluster headache.
doug <dougster33@yahoo.com>
wichita falls, tx USA

Hi: I suffered thru episodic clusters from 13 to 55. At 63 I am now cluster free. I fell of a roof landing on my head at 55 and the headaches have never returned. I feel that my doctors think it is my getting older that resolved it. Personally, I believe that the fall somehow moved something in my skull or brain, removing the contact point for the horrible pain to occur. Whatever, I am free from the hell that I know most of you are going thru. I do not at all suggest falling of a roof as I was extremely lucky, but I wish that this accident could possibly be investigated to discover what it is that really causes these things. At least now you have weapons to treat this curse. Near the end of my headaches I used imetrix very effectively. I'm sure that I have tried every medicine available for these clusters and lots of therapy(when I was younger and listened, some people made me believe that these headaches were mental). And friends would say that I just need to relax to beat the headache. Everybody who has them knows that that is impossible. I'm glad that I found this site and I just felt inspired to share some of my experiences. I wish you all well. Let me add that in some ways this suffering makes us stronger because we have to be harder than others and we usually do better as we somehow manage to survive.
Stuart Freeman <sherwinfree@hotmail.com>
kensington, md USA

Wow this is a relief everybody is saying the same thing I was going to say. I have suffered 10 years now with cluster headaches. First diagnosed wrong the DR said my symptoms were odd and had not heard of them ever before. I asked my dentist could it be my wisdom tooth he sent me to a oral surgeon. He pulled my one tooth but he told me I should see a Neurologist that my problem was vascular. When I went to the neurologist (2 years after my 1st headaches and initial DR visit) there was a poster on the wall "Three types of headaches tension migraine and CLUSTER. There it was in writing everything I had I was right there. I felt more the relief then I can express. Now I am feeling that comfort again because of this site. I am having an episode now and must say goodbye for now and thanks a million.
Kelley
USA

Hi everyone. I am new to this site. I have had cluster headaches for about 2 years. As of right now I'm suffering from an episode. My last episode was in feb-mar of 2008. I didn't know what is was but now that's it's back I did some more research and am trouble to find out the results. To all of you out there suffering from the same if not worse pain, my heart goes out to you. This is all new to me and I'm still being educated on all info. I will try and check in once and awhile. I now know that I have to be strong, and I hope that all who are suffering will try and do the same. EC
Ernesto Cotto <ecotto38@sbcglobal.net>
Chicago, IL USA

Hello all you brave people, well at last I have finally found a website that offers support for my condition, I to suffer this hurrendous pain and I am halfway through my current cycle and yes im exhausted and fed up with the pain, can I just say my doctor thought i had lymphoma when i first went to the specialist!!! how wrong he was, anyway he has taken a keen interest in our condition and he said no-one should suffer the pain that we have to put up with and appoligised, im going for tests soon so i will keep you all posted, in the meantime he has given me codiene and to be honest they have cut my pain time in half, but a few hours later it wakes me up again, nut atleast the pain doesnt seem to last as long, perhaps you great folks want to give it a try theres nothing lost, anyway keep fighting one day we will have answers.
Phil <phil.murphy732@hotmail.co.uk>
Middlesbrough, Cleveland UK

Shocking and a relief to find this site-- it did move me to tears. It's strange because pain is very isolating. ("After great pain a formal feeling comes"-- Dickinson.) Have been having these for 9 months now. I believe mine started as a result of taking the antidepressant Wellbutrin. I'd like to know if anyone else had this connection as well. Also, for me, my gut seems to be intricately involved in this mess. I get horrible indigestion & that's how I know now an attack is coming on-- getting rid of the gas also gets rid of the attacks. I have never found anything about a brain/gut connection. Does one exist for anyone else? I get these attacks pretty much nightly. I don't think I've had two pain-free days since December. At its worst, in January and February I was getting 10-12 a day, morning noon and night. Honestly am not sure how I survived that spell. Once I stopped taking Wellbutrin, the attacks declined dramatically but have never gone away. I was also taking neurontin for a long time. My suspicion is I messed up the seritonin levels in my body. Also suffer from Seasonal Affective Disorder so may have had a weakened pineal gland in the first place. These are all just guesses. The main is real and I was diagnosed by a wonderful woman at the Cleveland Clinic, a Dr. Kriegler, very thoughtful & gentle. Now let me mention the things that help, and then those that make things worse. The more we share, the better off we'll be, right? Water does help. The more water I drink, the better off I am. Vigorous exercise-- especially in fresh air. The more vigorous and tiring, the better-- jumping jacks, jogging, stomach crunches. Getting outside in the air helps tremendously. Of course I dread winter when it meant marching around in the snow at 2 a.m. and sleeping in my car to get fresh air. Eating smaller portions, eating less junk food, less sugar, eating organic. Yep, these things help some. Showering sometimes helps-- even holding my hands under running water sometimes brings some small relief. Rest when tired. What makes it worse? Overeating, under-hydrating, stuffy rooms. Perfumes and perfumed products (I've developed an allergy to scenes and substances I never had.)Too much heat. Junk food. Tension. Salty snacks. Weirdly enough, computers and cell phones also make me worse. My chirpractor gave me a magnet to carry in my pocket, and that makes it possible for me to sit here typing this. I'm sorry that anyone suffers. I wish there were easy answers. I am so relieved not to be alone and to have found this site. Courage, courage, courage. I've heard it said that if G-d creates a disease, he also creates the cure. I believe this. Maybe we're the canaries in the coal mine. Maybe the cure is just ahead.
Liz <heartbreakdiet06@aol.com>
NY USA

Hello every one i'm 43 been having CH for 8 years. just find site and see i'm not alone my CH beem in remisson for a year till last week been have 3 aday. hang in they all and thanks
Mike <maddog6691@embarqmail.com>
Liberty, NC USA

Hi, I'm Krysta And I've had cluster headaches for 8 years, I'm 16. I just got diagnosed today he prescribed me Verapamil(daily pill 3 times a day)and Migranal.(nasal spray) Although we can pay for the Pill, we cant the spray. Does anyone know another that is cheaper. They want 500 without it being insured its 107. It was the happiest day, followed by the saddest. I'm still trilled to of found out what i got, but whats the point if i cant have it.
krysta thrower <krystarenea@gmail.com>
oklhaoma city, ok USA

Hi everyone hope all is well ? Well im back once again with the night mare yes my pains started again 3 days ago n getting worse over the days, iv just started my verapamil 80mg n my oxygen , im gunna ring my nurse for them injection in my head as that worked in the feb,,i just wish this nightmare would end av im sick ov them already n i know i could be like this for week ,just hope i get the injection in time n that can take up to a week toget me in hospital for it n that takes the pee really ,,Over many year iv been like this with the CH 19 year around there still isnt anything out there for us to go to n take about it n find other things that could help us all out i think its lacking for all us suffers :( ,,As anyone found something better to help the clusters out plz ? if u have can u please e mail me n i can av chat with my doc n nurse ,,well i hope u all out there take care n be pain free ( wishful thinking i think lol ) il be back again to read all other comments :) thx all agin for been so kind n caring xx tc all bye
sarah <sarah_carter2006@hotmail.com>
hull, UK

My husband was in an auto accident 14 years ago.He broke his neck,thats when the ch started.O2 does not work,Imitrex does,but its not good for your heart.During a ch his blood pressure has risen as high as 210 over 131,pretty scary.One thing he does do,which does not stop the pain,but distacts him from it is a frozen dish towel on the side of his pain.I feel so helpless during his cycle of ch's.
Sherry <shebby56@yahoo.com>
Salina, OK USA

Very nice site! Very helpful to know that we are not alone in the pain. Fantastic!
Sebastien Dube <bastium@hotmail.com>
Sherbrooke, Qc Canada

I'm 32 and brand new to the site. I've had these headaches since I was 15. I had a long remission period of about 3 or 4 years following the passing of my Mom but they are back. I'm trying O2 for the first time, hope it works as well as you say. Tried Immitrex nasal spray and it worked really well but the manufacturer (as well as the insurance company) only allow 4 doses per month. I laughed at that since I average 3 headaches per day. Looking forward to visiting the site while in remission.
Adam Realmuto <SneakyPete24095@hotmail.com>
Roanoke , Va USA

Hi. This is only my second episode of cluster headaches. I first had them 3 years ago which lasted for about 3 weeks. After several tests, a neurologist told me I had THE CH. No cure, no known cause, no known triggers, just manage the pain when it hits again. That's what I am doing now, and I am into my 5th week of being awaken at 1 o'clock in the morning, sometimes twice more before the sun rises. I feel sad and happy at the same time to find all of you guys who share the same experience. Be strong, hang in there, keep the faith.
Tess <thofilena@rogers.com>
Toronto, ON Canada

I m 42. For over 30 years I thought it was just me. The only real support I ve ever had has been my wonderful wife of 20+ years. Without her, I would have had to end this. It breaks my heart to know how many people have these headaches. I have been misdiagnosed repeatedly, and accused of drug-seeking. I have developed tremendous distrust for the medical profession(s.) As suspicious as this sounds, I had to diagnose myself(Wikipedia seems to know me as well as I do.) I feel deep gratitude and sorrow to find all of you. During the cycle, most of my too-many waking hours are spent in coping and avoidance behavior. I never know when remission will begin or end. I didn t even realize how many of my symptoms were symptoms. Is it possible to feel validated, vindicated and vanquished all at once? My heart goes out to all of you.
Eric <reptari@yahoo.com>
Columbus, Ohio USA

Hi! well i'm a 34 female witha 17 month old son , that just discovered that i also have cluster head. it's been going on for about 4 months now. i hate those attacks, omg! it breaks me down and drops me to my knees. I'm on predinose and topmax it's been helping some what.. i really dont enjoy take meds but i know if i dont take the pred i get a really bad attack that can last for about 2 days, so i need all that advice i can get since im new to this disease.
Yasmary <yasmarygulotta@yahoo.com>
apopka, fl USA

hi all you unlucky people i have had C.H for about 24 years took doctors 4/5 years to get to the bottom of it but thank god they did. im currently into my second week of yet another cycle im taking verapmil and naramig (which i havent seen mentioned)it seems to stop me having the big ones so far but i still have the pain in my eye most of the day and night. good luck to you all, keep fighting the beast, be strong take care
andrew <atat@hotmail.co.uk>
rossendale, uk

I started getting my c.h. when i was 9. I didn't get diognosed till i was 25. I am now 53. I have tried several drugs and treatments over the years. In 1986 i was suffering from depression brought on by alchohol and demerol i was prescribed for my clusters. One of my doctors at the time put me on amitryptelene/perfenazine, taken daily. I also quit drinking because of the meds. I havent had cluster since. I hope this info helps someone.
mick delao <mickdelao@yahoo.com>
albuquerque, nm USA

I have been a cluster migraine sufferer for about 6 years now, and I'm just now coming out of my latest cycle. It was not until today that I realized just how much was known about these headaches. My doctors know next to nothing about them (it wasn't until a year ago that I was even diagnosed), and I've been treated like a faker, an over-reactor, a drug-seeker, and everything in-between. I am so thankful to know about this website, to be able to connect to the rest of you out there, and to have access to the treatment suggestions. I've felt very alone for a long time, and it is nice to know there's others out there who know what it's like. Thanks.
Amanda <IvyClimber@gmail.com>
Gulfport, MS USA

I have been suffereing severe head pain (in the same place-directly above my right eye on the top of my head) for months now and have been to the doctors twice and A&;E at my local Hospital. Just take theses tablets - see if they help.....I went back to the doctor again on Monday of this week and he has arranged for an urgent CT scan. I have been worried sick that it might be something like a cancer or something like. I did not realize that there could be something like Cluster headaches and I am not sure now after reading some of the entries whether I want to be a sufferer now, not that I will have that choice whatever is the problem.... :0(
Bill <stairdesign@aol.com>
Ashford, Kent UK

I use to think I was alone in this, I have always had a very high tolerance for pain, but when these hit I can't seem to fuction, can't think and I become just a big baby wanting my mom to make it all go a way. They ususally start like a pin at the back of my head and moves forward growing in it's intentsied as it reaches the back of my eye. Feels like someone is shoving a white hot knitting needle into the rear of my eye until the pain incompases half of my head and face. My family feel helpless to help and at the sametime can't stand to be near me because I become mean and irratable. My Docter has prescribed meds no help. I hate when they go away because I know the will come back but not when and that is almost as bad at the pain. I have lost jobs, because I was able to work, lost girlfriends because they couldn't stand to be near me.
Bob J. Latshaw Jr. <rjl4570@yahoo.com>
Howey in the Hills, FL USA

I've had clusters and all of the headache types for the past four years daily. I've had headaches since I was five years old. I'm on daily elavil for suppressing the headaches, it helps, but is not by any means good enough. Thelast four years have been a real trial and they only seem to be getting worse. I've seen two neuralogists and they have recommended all sorts of med's. I'm about to try lithium and think I only have one or two more kinds of meds to try after that. I've even tried botox. Well, this morning at 6:00 am my cluster headache woke me up with a bang. I ran for the prednisone. Took that - it didn't even touch it. I ran for the T3 - it didn't even touch it. I ran for the Zomig rapiment - no relief. An hour later, I took another Zomig rapiment, tied up my head tight with a rag like my mom used to do for me, but an ice pack on my head and waited. I kept repeating to myself - this too shall pass, this too shall pass. And finally the med's started to work slowly. By 8:00 am I am pain free, but I'm still thinking I will get another attack. They won't wane for another two days I think. The lithium won't be in till Friday and this is Wed. I'm scared to try the lithium but I don't know what else to do. Has anyone got any feedback on lithium? Glad you are there, glad this site is here.
Donna <sabina72@telus.net>
Victoria, BC Canada

Mine started 2 years ago. Had the ER visit with the emergency CT scan.The IV morphine which did nothing. The Percocet that did nothing. Then the MRI. Then the visit with the neurologist. "I think you're having migraines". They hit every night 2-3 times after going to bed. They lasted 15 minutes to 4 hours. Then just stopped. I did research and made the diagnosis myself. They lasted 5 weeks then stopped for two years. Then that god awful feeling came back. The burning, stuffy feeling in the right nostril, the right eye tearing. This time they lasted 55 days. I had 112 attacks. Every one of them at night after going to bed. Didn't bother going back to the doctor now that I know I don't have a brain tumor nor aneurysm. The pain will stop. I just don't know if it's going to be 15 minutes or 4 hours. That's a lot of walking. I haven't had an attack in 3 weeks so hopefully they are in remission for at least another 2 years. Thanks to all of your postings for advice on shortening the attacks.WHEN they recur I'll go to the doctor and try some of the remedies I found on this site.
Greg Kline <gkline69@hotmail.com>
Saint Joseph, Mo USA

Hello, i have been a clusterhead now for 4 years,thank you for setting up a place where i can learn aboout my illness as i get these 3 or4 times aday
mal <malgwyn@live.co.uk>
kent, Uk

57 yrs old, 34 yr history chronic daily pain - 2-12 hrs duration, occassional 10 to 14 day break around 12 to 18 mos, had most of the typical treatments for migraines -for past fifteen years treated with 900mg. lithium carbonate daily, and verapamil,along with cloazepam,helped to reduce frequency most of the time. 3 yrs ago after dental procedure i was prescribed percocet for pain. this is the strange part the percocet did not reduce or cover up the pain. it actually stopped the whole process within 10 to 30 minutes dependent upon how quickly i recognized onset. My nuero specialistnow prescribes the lithium and percocet 10/650. although there are other potential problems to watch for , i have been attack and pain free for past 2 yrs
jimmy <madchiz@yahoo.com>
cartersville, ga USA

Honestly, I CRIED when I first discovered this site...much like the OTHER time I discovered I wasn't the only one. I'm now two months into a cycle...a cycle that hit me by surprise because I usually get them once a year, beginning in late Fall/early Winter and ends in January. I had that and thought I'd be okay for a while...and then in April, it hit again. And is still with me. Ironically, I went to a real live neurologist for the first time (I've been suffering for nearly 9 years) today...and while sitting in his waiting room mid-afternoon, one started. So, he got to witness what was happening. And I guess he confirmed what I already knew...frankly, from finding this site a year ago. So, THANK YOU! I've been using Imitrex nasal for about two years...kind of afraid of it because of the potential fatal side effects...but then I guess, all meds say the same about heart attack, stroke and death. So I'll be less afraid. While in his office, he gave me a sample of Zomig nasal spray. And it aborted the attack in two minutes...I was probably at Level 5...not up on my kip scale yet. So, that may become my new drug of choice. I've had 3 attacks in the last 24 hours...two at late afternoon and one this morning at 5 AM. Thanks for all of you being here.
Jay F <jay@jayfeldman.com>
Wilton Manors, FL USA

hi there, my name is tim and i'm a clusterhead as well..got the non-pleasent news sept. of 07..been battling ever since..tried a few differen't meds from the doc, but nothing has worked..so we keep going threw the process..my last cycle was 7 weeks long with 57 full blown attacks..with six hospital visits...the visits to the hospital only happen if the 12 pills don't work..well maybe a little more...the attacks usually last 45 minutes ,then we hope the meds kick in...so that's my story, have a nice day!!!!!
tim wiens <tw37@shaw.ca>
winnipeg, mb canada

hi clusterheads thanks for all your comments and descriptions.iam 7 weeks into a bout and am awaiting to see a neurologist yet again,as usall the cycle wiil proberly be over befor i get my oppointment.i have been a ch sufferer for20yrs, have been taking 480mg of verapamil a day for 2yrs,they no longer work aand sumatriptan injection 2-5 times a day which does do the job.i hate this terrible infliction with every fibre of my body and can empathise and feel connected with all you ch sufferers.i am hoping i have only 4wks left of this cycle and begin to climb back out of this dark, dark place and become "normal"? again.hope pain free days come soon to us all. patrick.
patrick roper <pt_roper@yahoo.com>
bristol, bristol uk

As an RN, certified hyperbaric technician and clusterhead, I am excited about the new evidence that one 90 minute treatment of HBO (100% O2 at 2ATA) not only aborts the headache but may very well abort the entire episode. Although not as yet approved as re-embursable by most insurance, if enough people contact medicare and ask, it could be.
Joe Corey <capnbuzzy@hotmail.com>
St. Petersburg, FL USA

Hello, i have been a clusterhead now for 6 years,thank you for setting up a place where i can learn aboout my affliction.
Whip Gallant <wgallant@compassdirectional.com>
Airdrie, Alberta Canada

My husband suffered from CH about 20 years ago. They stopped after about 3 years. This past March he had a mini stroke while we were in Phoenix. A week after his surgery he started getting the CH back again. He had them from April 3,2009 until June 5,2009. Every day, between 9 AM and noon. The neurologist had him on several different pills but they didn't work. So he went back to his primary DR and he got some propranolol. After 3 days his headaches stopped and he hasn't had any since. Not sure if the medicine helped or they just stopped on their own. Either way he is so thankful they have stopped.
Jeannine <rjarnie@aol.com>
Graham, WA USA

Strange how you can be comforted by the misery of others in the same position as yourself. I've been a clusterhead since 2003. Episodes that seem te get longer and longer. Tried a lot of medication, currently on verapamil and sumatripan, but I will start using oxygen next month. Thanks for having this little spot on the internet.
Mark
Netherlands

I've suffered for 10 years and consistently misdiagnosed with migraine, total revelation today that I have CLuster Headaches. Seeing my Doctor tomorrow and will insist on a referal to a neurologist!! When others were describing their migraine I thought I must just have a low pain threshold cause I was getting such severe pain, now I know why! Just had my first headache of an episode this morning so not looking forward to the next couple of weeks but pleased to know I'm not alone!! Really useful site thanks!
Meredith
Gateshead, England

I have been a cluster headache sufferer for 12 years now. I was very thankful to find this website and read of others' experiences. While I wouldn't wish this upon my worst enemy, it's cliche to say but misery loves company. Thanks to all for sharing and I wish you all pain free days! Chad
Chad K. <shackc@cox.net>
Herndon, VA USA

just to say hello. i think this site is very cool. nice to meet you. robert
ROBERT F.SHANNON <95bobo@live.com>
NEW HYDE PARK, N.Y USA

Pretty weird being this excited to read testaments from such tormented people. The gods must be crazy!
Mike <ghengis_hotwheel@yahoo.com>
Mo USA

I had my first cluster headache in 1999. I was in nursing school and of course the doctors tried to associate my headaches with stress. Through many, many pain shots that did not work and many trips to the ER in the middle of the night, i have found that a shot of DHE usually helps in about 30-90 minutes. But 100% O2 knocks the stabbing pain in about 10 minutes to where I can handle the H/A until the DHE fully resolves the H/A.
Kelli <firetigernurse@yahoo.com>
Electra, TX USA

Happy to introduce myself, I'm Becky...a clusterhead too. I'm saddened and moved to read your stories. I truly share your pain. March 23rd, 1992 the beast invaded my brain and has never left me alone for more than 3 days at a time. We have no peace do we? All 24 hours of the day I feel that I am tied to a train track..I know the train is coming...I just don't know when..but, IT IS coming. I feel scared and trapped always. My beast is violent and the shadow never escapes me. I am sad. I broken and a wreck. I have a diminished life, diminished expectations, diminished enjoyment, diminished hopes.I have been at the Mayo clinic for17 weeks now looking for help and relief. Still the music beats on and on in my brain and in my eye. I feel that I have lost the last 17 years and 4 months. I feel that all I have done is suffer and suffer some more.Yesterday I was asked a question in a pain clinic. We had to describe our "happy place". my answer was honest but tragic...I would go to heaven, the only place where I truly will never be in pain. I only suffer on for the sake of my 6 children and my husband. Certainly not for me. We sufferers truly need help. We need a cure and relief. thanks for letting me post a venting. Rebecca
becky mesec <beckymesec@ymail.com>
Burlington, WI USA

I have had Episodic CH since age 16. I'm now 26 and am going through my 4th cycle. What a great, informative site this is. I've gone thru the motions as far as being mis-diagnosed repeatedly over the years. Sick of describing to people what I feel and having them give me a funny look like I'm weak, or seeking pain medication for recreation (hey i rhyme!)or something. We (CH sufferers) are stronger than they can ever understand.
Chris Macko <cf.3000@yahoo.com>
Hiram, GA USA

My husband has suffered with cluster headaches for 5 years. He saw a doctor in nyc in the begining of march and his headaches are gone. He hasn't had a headache in 14 days. He was having 3/5 headaches a day. He was taking verapamil-240 miligrams/day. He was dose was changed from 240/day to 80mg 6x a day. This change took six weeks to work but he is headache free. We have our life back.
patricia <patriciafoley52@yahoo.com>
everett, ma USA

i have sufferd custer headaches for the last 10 years i started takin them when i was about 20 and i took my first attack last night the pain in my head eye and ear you could not say in words my husband has to get up and try and comfort me but i cant even taik to him i just sit their rockin back and forth with the tears running i am on my way to see the doctor today who will say try these tablets you not had these nobody knows the pain unless you have had these attacks my family dont understand because they have never heard of cluster headaches and i have to miss work because it takes every last bit energy out my body people hav to be more aware of cluster headahes not enough is being done for the suffers
lindsay brennan <lindsay09@blueyounder.com>
scotland, scotland

my boyfriend has ch and i dont know how to help him other than grab his head when hes n pain, get him ice or just leave him alone and because i dont know everything there is to know about them and im not obsessed w/ this website like he is during his cycles then that means i dont support him what can i do to get thru to him that i do care about him and his pain
kristy <hotmilf2186@yahoo.com>
springfield, mo USA

Hi, my name it Cat. i was diagnoised with cluster headaches a little over a year ago in the hospital ER. i'm an episodic. i seem to have them all the time. but i do remember not having a headache for a couple of weeks. i have tried METHYLPREDNISOLONE, SUMATRIPTAN, GABAPENTIN, FIORICET, IMITREX TAB AND NOSE SPRAY, TRAMADOL, TOPAMAX, ZONISAMIDE, DEPAKOTE AND VICOPROFEN. The Gabapentin helps so that the attack isn't as hard. The Vicoprofen dulls the pain too. They wanted to do a nerve block but i asked for oxygen instead. My doc agreed but i think he doen't know how to prescribe it. And i'm going to go ahead and have the nerve block done. i need something!! i leave for St. Thomas on May 2nd and i still have no oxygen script. i'm scared to death that i'm going to get a headache while im there and i won't be able to do anything but face the Beast.Today a friend of mine told me about this spa having a place where you can rent oxygen. so i tryed it out but it didn't help. but was worth the try. I have tried Accupunture also, but that didn't work either. Maybe it's bad to think this way but i'm thinkin i can just get the oxygen on my own. Would anybody here know how i can go about doing that? i've been Beast free for almost a week now but i live in fear waiting for the Beast to come back. Thanks for being here. plantcitygirl@juno.com
Cathy <plantcitygirl@juno.com>
thonotosassa, fl USA

This has been going on since I was 28 yrs old I am now 51. I thought I had the beast beat as its been three years of a every year pattern that will last for about 12- 15 weeks. 5 weeks ago I had just got on a plane to go visit relatives and it started out of now where. I looked at my wife and said I can't believe this is happening it been so long. Can you even imagine the roar of the palnes engines. no imatrex, confined to a small space I just wanted to jump the hell with a parachute. Now five weeks later the pattern has become one of my worse ever. 3-4 times per day usually beginning late in the evening one right after another ending in the early morning. Needless to say I don't sleep much right now. The shadow is even more intence than ever before. I found this site yesterday and cried as I read other stories, relating to just what we go through. the tears were from finding that there really are other people that understand just what kind of hell we go through its like reading my own book. Thanks for being here. Jon
Jon <jveenendal@hotmail.com>
Auburn, WA USA

I have been suffering with this since January - up all night- every night - but never missed work.. I was diagnosed in April by a neurologist - I am now getting accupuncture treatments and taking Propranolol - still suffering nightly. My employer tried to put me on FMLA, but do not have enought time on the job (since Sept '08) Does anyone know if this will EVER go away, so that I can function normally again?
Gwen
Warren, OH USA

i feel bad saying but it just feels good knowing i'm not alone it seems that not 1 person i know has ever even heard of clusters.i've had this god forsaken demon in my head for 17 years with 5 years off thought i was safe. what a wonderful rest of my life i have to look forward to
paul e <paule44@gmail.com>
branford, ct USA

hi to everyone. my brief story. 2 years of sinus/face/ head aches. seen docs, too much coffee, too many painkillers were the answers. 8 weeks ago got really bad viral infection,recovered then bang out of nowhere came kip8s. suffered 1 week, back to docs, sinus infection, steroid spray, one more week bad. finally see another doc who says ch. took 20mg imigran first time last night, but not fast enough. got o2 being delivered tomorrow. 3rd week now, every night 2 hours after sleep,1,1/2 to 2 hours. and kip 4 to 5 in daytime.always left side,sinus,eye socket,teeth, temple,neck down to middle of shoulder.tried red bull and strong coffee today and got control of my eye back, 10pm now and feel ok but dreading sleep. going to try sleeping in a chair, in lounge with all creature conforts handy. well thats my contribution. i found this site yesterday and have read a lot of stuff, im not prone to getting upset,im a 51 year old male,but some of the messages brought tears to my eyes, i wish you all the best in your pursuit of a pain free existance.
chas <chas.juli@btinternet.com>
torquay, devon england

God bless all cluster sufferes,I have been pain free about five years.I guess I outgrew them I am 70+ years old.The best thing that helped me was prednizone, oxygen ice on the head+this sounds strange but these things are strange.I would put on earphones and Celine Dion at a very high volum,and my wife would pray for the pain to stop
David Raines
SC USA

Hi fellow Clusterheads: I started getting headaches 4yrs ago and i thought they were migranes. During more research on internet,i found out that my symtems are 98% consistant with cluster headaches minus the stuffy nose. Mine are always clear and theirs a burning sensation while breathing and feels like air going directly to my head and makes my head pulsate even harder. But i have not tried oxygen therapy yet,but will do so soon.Im taking imetrix tabs 50mgs.They work but,insurance covers 4 tabs every 2 weeks and my attacks are nightly (11:30-12:30)p.m. I m totally happy i found this site, now i can talk to people that can relate to this MONSTER living inside our heads. THANKS Hector
Hector <bighec66@yahoo.com>
Inglewood, CA USA

Hi Guyz N Galz Am so relieved to have found this site, have only just been diagnosed and thought I was dying so great to know am not alone and that other people understand how ferocious and devastating the pain is. this site rocks
Wes Fazzani <wes.lynsey@ntlworld.com>
Orpington, Kent England

hi everyone, im new to this site, not new to the clusters, 24 years and going. what a relief to know i am not alone.
lisa <lmadru@charter.net>
ludlow, ma USA

Hi all. I am so relieved to have found this website. I have read nearly every word on nearly every page, and I feel like I have found a new home. I got my first CH in 2003, shortly after my 40th birthday. I didn't know what was wrong with me at the time, but I was certain that I had developed either a brain tumor or an anurysm... either way, I would be dead by morning. I actually got up and wrote out a last will and testament and left it on my dining room table. When the pain finally subsided, I was relieved to still be alive. Lo and behold, it came again the next night, at exactly the same time. And the night after that. I was still convinced that whatever I had, it was going to kill me. After exhaustive research, I finally figured out what I had. Since then, I have had three episodes of CHs, each worse than the one before. My last episode was in October of 2008. It lasted three weeks. I have no idea when the next one might strike. I pray every single day that it will never strike again, but I know better. Thanks for being here. This site just might save my life, or keep me from taking it, during my next CH episode. God Bless you all.
Barbara <barbin-reno@hotmail.com>
Sparks, NV USA

Thanks for creating this website. I've only been diagnosed recently, so the information on this site has been incredibly helpful.
Jeff P <thepollocks@att.net>
Belleville, IL USA

I was diagnosed at age 16 and suffered until age 30. I'm now 44 and just had a CH. I am scared to death - sick to my stomach thinking what this might mean if they actually come back in full force. My life will stop as I know it. I can't stop crying just thinking about it.
Kelly <kelly.tidwell@membersunited.org>
Granger, IN USA

Hello-Been suffering since Aug of 2005. Now they are becoming chronic. Tried prendisome, imitrex, depekote (worked for a while), now on divalproex. What else should I try? James
James <mferger2000@yahoo.com>
Oak Creek, WI USA

8,9,10 here we go again! The thing I hate the most is the constant changing of treatment needed to fight this. No one strategy seems to work. Ice packs, warm facecloths, massaging different areas of my face/head/neck, and not to mention the combinations of drugs. Todays remedy is tommorrows failure. Use everything you know and be creative.
Jim <james.davis@med.ge.com>
Danielson, ct USA

Been fighting the moster for over 25 years...
Jim Fowers
Holladay, UT USA

Thanks to this site I was able to be sure that what I was experiencing was CH. It was shocking to hear so many people describing the nightmare I've had to endure. I am now taking notes so that I can present your suggestions to my doctor for an effective treatment. Thanks.
Clint <Frostclint12@yahoo.com>
N.C. USA

I thought there was chance that it was all done, I have not had a CH for about two years, that is until yesterday! I have the reminence of one right now and I am not looking foward to going to bed. Tomorrow I am off to the doctor to try and get oxygen!
jason <jmilling@stclaircollege.ca>
on canada

hI EVERYONE I AM IN THE NIGHTMARE AGAIN. I HAVE HAD THESE FOR 10 YEARS, I HAVE HAD THEM FROM 2 WEEKS TO 3 MONTHS. I AM 42 YEARS OLD. I HAVE TRIES EVERY MED POSS. I WAS 1 YEAR CLEAR, WITH VERAPILIL 120MG. I HAVE LOST SO MANY JOBS, ITS SO DEPRESSING, I JUST FELL LIKE MY LIFE IS OVER. ITS SO HARD ON MY FAMILY. I AM WORKING THIS TIME THEY ARE MILD COMPARED TO NORMAL. IF I DO O2 AND IMATREX I'M OK AND HAVENT BEEN TO THE ER YET. I JUST LIVE MY LIFE AFRAID EVERY DAY. I HAVE ALSO BEEN IN THE HOSPITAL IN THE PAST. EVERY TIME THEY ARE DIFFERENT, AND DIFFERENT MEDS. I JUST NEED TO TALK TO SOME ONE THAT UNDERSTANDS. YOU CANT EXPLAIN THESE TO ANYONE HALF THE TIME THE DOCTORS DON'T KNOW WHAT TO DO. THANKS FOR LISTENING TERESA
tERESA HAGAMAN <MACY91192@YAHOO.COM>
PEORIA, IL USA

Hello fellow clusterheads, Hard to believe,but after 25 years my headaches have returned. I was greeted with them about three weeks ago and have had attacks every evening climaxed by a really tough one this past Wednesday night.I decided to call the doctor Thursday morning and he was able to see me. He gave me a few samples of "Treximet". It is a pill you take when you feel first signs of the attack. Thus far it has really helped but I am sure a little to early to tell. I have had to episodes since I got this medication. In both cases the pain began to subside with in 10-15 minutes. Completely gone in say 30 minutes maximum,which is a short cycle for me. I will report later on a update.
Paul Park <paul@prudentiallynchrealty.com>
Ruidoso, NM USA

I have been suffering with CH for 40 years and I had thought that I had gotten rid of them but lo and behold after 4 years of freedom they are back. I have tried numerous meds but none seem to work well. Prednisone,verapamil,maxalt and cafergot. The best for me is cafergot. My daughters boyfriend did some research and suggested that I try some Mushrooms. The research that he did and the articles that I read made me say yes to these. I was all for trying something natural instead of all the chemical fixes that did not seem to work. I tried 2 grams of them and they had no effect whatsoever. I have to blame myself for the results though. The evening before I had an attack and took some cafergot to ward off the beast. In the article that I read cafergot works the same way as the psyllacibin works. I was supposed to wait for 4 days or so to allow the cafergot to get out of the system and then try the mushrooms. I will now wait for the 4 days for the mushrooms to get out of the system and then try again with a better chance for them to work. anything to get rid of this awful curse.
Andy <logana7@sympatico.ca>
Madoc, Ontario Canada

I was reading some information about Cluster Headache, and it was remarkably similar to headaches I suffered what seemed like constantly a year or so ago. Then they hit again today, so bad that they sent me home from work. Not really having any information on this beforehand, I just assumed that they were tension headaches or something. No doctors, just the occasional Excedrin Migraine (if it helped..not always), or if lucky, Loretab took the edge off enough to function at a desk job. That was about a year ago, when I worked at a Newspaper, high stress, tension, and it was hot and sweaty there..which only made it far worse. Then intermittently over what seemed like a wonderful period of freedom from that horrible pain, mostly anyway. Haha. Then today at my new job, stocking shelves and running back and forth, scrambling to get work done (hot, sweaty, stressed, mind you) it comes roarin back. I really hope this isn't CH and I'm just having bad headaches.
Brett Gillespie <blazermortis@gmail.com>
Derby, KS USA

finally a site that can get people who dont understand how bad these headaches are to realise how much pain we really are in. I have been a sufferer of this shit for over ten years now and the medical proffesion just dish out painkiller after painkiller and not one of them does any good. I have been hospitalized several times and then sent home with paracetamol and codeine. Next time iam going to handcuff myself to the bed until they do something about it
mally <cheekychilli@msn.com>
hull, england

nice to know (if u cn say that)that there is someone out there that understands the pain thhese headaches cause.i would like to talk to any other sufferers out there
mally <cheekychilli@msn.com>
hull, england

I have had CH for over 20 years. I remember having one when i was about 12. I am now 35. They go away sometimes for a year or more. Now there back. 3am every morn. I want to hit myself in the head with a hammer. Right side only, this time. I woke up 3 days ago with a CH. It had been more than a year since my last one. Each night is getting worse. It is 1pm now and i am allready scared of whats to come when i sleep tonight. I work 2nd shift and go to bed around 1am. Thank you for this website. My parents used to say it was "all in my head". Like i could conrol it. I have found ice to help. I need to call my doctor. i need to do something.
G Pearson <gspends@yahoo.com>
Lake City , AR USA

wow, 20 years to the day, i start my 6 th cluster cycle. i wonder how long this one will last. the last one was 3 months of pure hell
zline <zline@aol.com>
miami beach, fl USA

I am a sufferer of Episodic Cluster Headache since 1982 . I did not know what I had until 2001 when I looked it up on the Internet. My family Doctor (for 25 years) did not know what I have, then in 2001 I showed him the $40.00 report from medifocus.com RE: Cluster Headache. and told him I need to be on Oxygen asap, so he put me on Oxygen / Prednisone . I have been in remission for last 2 years then the gremlins came back mid February 2009. this year I had many attacks but 2 of them where the worst I have ever have , one last month 3:25 minutes and last night for 2:30 minutes the gremlins are back . I have visited your site in the past and it helped me a lot knowing there are others like me in this world . I know for fact if a sufferer smoke he or she must let go of smoking while in cycle . I had never talked about this out side my family but now I am. Thanks to you , I do not wish Cluster to any body and I hope some day the cure and the cause will be found . I have 27 years experience in this . If any out there have a question about my experience or if any can give an advice , please e-mail me (naji@sleepheadsup.com) may God bless you and keep the Cluster away . Naji K. Haddad
Naji K> Haddad <Naji@sleepheadsup.com>
Tampa, Fl USA

Hello to the sufferers out there. My mother is a clusterhead of 6 years (almost every day!) and she sent me to this site today. I was in tears reading just the opening comments... my heart swells for all of you. I'm sure my mom will get on here soon, and I'm so happy that she is not alone. As much as I try to understand, I know that I cannot. An interesting note: we went to the UCSF Headache Center yesterday for the second time and she had an occipital nerve block. Still too early to tell, but since that headaches are ALL that they deal with, I have hope. I want to be as involved as I can, so I'll be checking out the site and getting familiar. I also want my mom to give the water,water,water! a go. What an inspiration that is. Thanks for reading.
Mel <mel.madrugada@gmail.com>
santa cruz, CA USA

As a male at 63, almost 64 years old, who has in the past suffered from ch, I wish to offer hope to those of you still inflicted with ch. Mine were chronic and ran from about 20 yrs old to about 36 years old. I was a smoker and at this time I quit due to having children. The ch's went away and at this time I have been pain free since. Good luck to all who suffer and may you to find peace without ch.
jim lawrence <jiml@bayspringstel.net>
morton, ms USA

Hello old friend. Been since Nov last year that we've danced. I still remember all the steps we learned and practiced. It's been what...Thirty years since we first met but each time seems the same. I know you'll stay awhile but once again you'll leave me. Sad to think this is how we exist. In the greater scheme of things it might be better if we had never met but somehow I just get the greatest thrill out of saying GOODBYE again. Till then.
Jim Davis <james.davis@med.ge.com>
Danielson, ct USA

Hello all clusterheads! I am so happy to have found you! I have spent the last 2 years being told I have had everything from sinus infections to suspected brain tumors. I just happened upon some info about CHs 2 days ago, and then went directly to this website. I just started crying (beacuse I was so happy to finally know what is wrong with me). I have taken the quiz and read as much about CHs as I could, and I think I fit the bill perfectly. I just want to thank you all for being here and trying to help each other. I have printed off some articles that you all have recommended to each other and will give them to my Dr. He is a sweet man, but a small town Dr. so he is probably clueless.(at least he has been so far). But maybe he can get me to someone who can help. I will let you know what happens
Heather E <heather67849@yahoo.com>
hanston, KS USA

im 24, been getting this headaches about 5 years now. anywhere from 1-5 a day. the left side of my head starts to pulse, followed by watering of my left eye, only on my left side, does it hurt. sometimes i can feel it coming on, and i can take medicine before it really hits me, if not, im screwed. having headaches last anywhere from 15minutes to 3hrs. feels good to put a et towel on my head, curl up in a ball, in the dark, and cry myself to sleep. SOMETIMES i would rather shoot myself in the head, than go through another headache. i cant do anything in life without getting one. what am i to do
seth <sethgaber@carolina.rr.com>
matthews, nc USA

Hi all. I just found your site, and so far, it is fantastic. I am 51 years old now so forgive me if I don't remember specifics, but I started suffering from CH some time in my mid twenties. They started as chronic for the first year or so, but thankfully, changed to episodic. Also, again thankfully, my pain never exceeded level 7 on the KIP scale. My cycles would be 1 to 4 weeks in length, with 1 to 3 headaches per night, and periods of remission of 1 to 2 months between. For the next 15 years or so, I consulted several doctors (dentists, ophthalmologists, ear, nose & throat, GP) before one of them recommended a neurologist. He immediately diagnosed CH and prescribed Verapimil, which not only worked for me almost at once, but put me in remission for years. I've only had three occurrences since, that lasted only until I was able to get fully involved with the meds again. For me, that was the great thing about the meds. As soon as I felt comfortable enough to stop taking it, I could until the next occurrence. The meds arrested the episode after only 2 to 3 days. If any of you have not tried Verapmil, I highly recommend talking to your doctor about it.
Ron Hodkins <rshodkins@gmail.com>
Auburn, CA USA

Hello! I just found this site and began crying when I read the testimonials about cluster headaches. I have been suffering from different types of headaches for most of my life. I am 36, female, a mother of 3 girls and busy. I don't have time for headaches. Lately, I have been suffering from a different type of headache that I am not familiar with and it has been really scary. It comes on suddenly, it goes away suddenly, it comes back again. I want to literally rip my head off and have went to the ER several times for this. I am not sleeping and I am restless. Right now, I have so much anxiety as to when the next attack is going to happen, I get sick to my stomach. I have never felt this way and I feel as though I just want to die when this is happening. I don't know who I pissed off so badly to have this happening to me. I try and do all of the right things: drink lots of water, stay away from alcohol and smoke, eat a healthy diet, exercise, meditate(when my body allows it), take my meds and just try to function like I am supposed to. It just seems like it is getting harder and harder to live a normal life and I feel like soon, I will be confined to my home. I know there are other sufferers out there, I just don't know what methods of treatments people have tried. If you have any out of the normal types of treatments, please let me know. Thank you. Amie, Michigan
Amie <amierayhil@yahoo.com>
Frankenmuth, MI USA

Hi All, I'm very new to the attacks; it all started a week ago. I'm a very athletic guy standing at 6'1" and 200lbs and it felt like aliens was taking over my head. I wanted to take a knife or gun to my head to stop pain because it was so intense. I had to go to the ER today for an CAT Scan and they say it was a sinus infection. But one doctor research this for me and the symptons fit me right on. Since its only been a week, my questions is will get worst? Listening to some of you all stories only make me wonder. What is this thing? I never fely pain like this before and I'm a combat soldier that has been through a lot from Afghanistan to Iraq with multiple combat scenarios and never felt symptons like this. Are there someone helping us? I sympathize with anyone having these. I'm afraid to go to sleep because I fear of waking up with the pain or not waking up all. My left side is worn out from the attacks the last pass days. How do I educate my medical officers on this? Man, the pain!!!!!!!!!!!
Gabriel <gabrielboyd@earthlink.net>
Enterprise, AL USA

Well I am fairly new to this whole CH thing...Just started back in Dec '08..We bought a new house in Nov '08 & I thought maybe something in the house was making me have headaches. I had a history of epilepsy when I was younger & since the pain was so severe I thought I'd better get to a neurologist..sure enough he said what I have is CH's. I am currently undergoing a 72 hr EEG..so, since I have all this time on my hands I been doing lots of research on the net. I am soooo glad I found you guys & hope to be posting soon.
Ardie <paulvs@ktc.com>
Kerrville, Tx USA

Finally...some relief! I tried botox and it definitely helped. While it did not eliminate the headaches completely, it seemed to shift the focus from that suicidally severe eye pain to the middle of the heead; much more bearable, for me, anyway. Just ensure you go to a specialist, not some cosmetic person, for the botox. I saw a maxillo facial surgeon and he has had some success with botox for cluster headache. Do try it!
lynette whittall
USA

Hi, Wow! I thought I was having some kind of brain tumour or aneurism....Suddenly a couple weeks ago, I got this terrible pain in my head while I was shopping with my daughter for her birthday. I couldn't even get out of the car for a good 20 minutes. It came so fast - just like someone flicked a switch and OMG I thought my forehead was going to open up and spray brain everywhere. Then, just like that, it was gone. Someone flicked the switch again. I walked timidly into the store (because I knew it was going to be loud in there), but I was fine. I thought nothing of it until I got the same headache the next day (while shopping, at that!). Decided to get in to see my doctor after that one - had to wait 5 days with more headaches in between and the thoughts I was dying a painful unexplained death each time, then they were gone. My diagnoses is not 100% in yet, but both my family doctor and neurologist are leaning toward these cluster headaches. Next appointment tomorrow and hope they have an answer for me. I am definitely going to try that water treatment on your site.
Marina Ryder <marinaryder@rogers.com>
on Canada

I have suffered from CHs for about 15-years. Oxygen therapy works well for me as does Imitrex sprays when I can't get to my oxygen. I've not had a cluster in the past of years. I have gone onto Medicare since my last cluster and have been told by my oxyger supplier that Medicare will not cover oxygen therapy for CHs. Anybody have any experience with this? How can I get the oxygen covered?
MikeyZ <mzion@refdesign.com>
Blue Bell, PA USA

I thought I was crazy beating my head against other objects, but now I see it seems to be normal(if being in severe pain is normal). I went about 4 years with the wrong diagnosis until about a year ago. I'm glad to know that there our others like me and some so close.
Heidi <hineely89@aol.com>
Pearland, TX USA

Never realized there were so many people suffering the same as me. Thought I was going crazy trying to explain what I was going through to many doctors before finally one came up with CH. Been suffering for over 5 years. Put me on anticonvulsants. Just started new episode week ago after being in remission for year. No treatment in sight but at least now i know I'm not the only one.
Kerry Sawyers <kjamsawyers@yahoo.com>
Saginaw, MI USA

I've been a sufferer for about 7 years now, after waking up every night for a week trying to knock myself out on my headboard to rid myself of this severe pain! My original doctor prescribed loads of non effective pain killers and on my return to the surgery the following week, just out of luck i managed to see a 'visiting'doctor as i was rolling around the waiting room floor, who immediately diagnosed clusters headaches. Part of me was relieved there was a diagnosis and it wasn't a massive brain tummour as i thought, but to find out i would have this condition for the rest of my days was in some way worse! People know about brain tumour s, NOBODY had heard of cluster headaches! When i'm not having the dreaded pain, i'm just me, when the pain hits, i'm like a demon possessed! I'm on oxygen therapy at the moment which gives moderate relief, but bad days i feel is it's really worth going on? In the 7 years i've only had about 2 weeks pain free... how much longer can i go on? I plan to get married in a few years time, but will i actually make it to the ceremony? People say they understand, but unless they're suffering too, they mean well, but don't really understand. I'm trying to stay optimistic, i guess today's just a bad day.
Marcia <marciammitchell@hotmail.co.uk>
London, United Kingdom

Hi all, great job on a great site! I'm relativly new to CH's., Had an 8 week episode 3 years ago and currently having another :( I was diagnosed back thenm and given anti-convulsant medication that didn't really help! I was referred to a neurologist but i took months for my appointment to arrive and the clusters had dissapeared by then. I so wish i'd have still gone for the appointment and maybe it'd be easier this time round. Trouble is i'm pregnant at the min so many drugs can't be taken safely in pregnacy, doc rekons i'll just have to ride it out and hope they go away quicker this time. The last two nights have been a living nightmare I just don't know where to put my head! I feel like throwing myself around but obviously 6 months pregnant am aware of my growing little one. This is hell on earth, i tell you I'm not scared of labour, surely it cant be as bad as this pain every night!
Vikki <peachie4321@hotmail.com>
Lancashire, UK

Well...it's BBBAAACCCCK!! I am so distraught today - was awoke up at 5:25am with "the devil". I have been without a cluster headache since May 2006. This time I am so angry and upset - because I know what this does to my life in the time that it lasts - usually between 2 -3 months for me. I am going to go to the doctor tomm and pray that they don't think that I am crazy - this makes me feel that way. I am really realizing the anxiety that this cause - worring about when the next one will hit and if I wil get any good sleep in this cycle and if I should avoid all caffeine and smoke and sunlight - they all seem to be triggers for me. But I am not really sure. Makes me not sure about anything - because they take control of me and I have to suffer and wait out the storm. Wish me luck!
Tory <vogeltory@yahoo.com>
Woodbury, MN USA

I have had migraine headaches on and off for over 20 years. I am 44 now. However, recently I have been have like these strange spells (something that feels like a headache) that comes out of left field. It is almost like I get dizzy for a second and then there is this intense pain. It usually feels as though it is behind my right eye, but located in the forehead. Sometimes, I feel it in my temple. It feels more like my skull is going to crack and there is pain associated with it. I have had many MRIS, MRAS, CAT Scans, Spinal Taps, and two lesions were found on my MRI. They first thought it was MS, but that came back negative. My mom was a full blown diabetic, and I have two sisters who also have diabetes. I had gestational diabetes, but have been tested and so far, no diabetes for me. I can just be sitting or driving and out of nowhere, this thing will strike. Sometimes it is consistent, but not always. I don't know if it is a "Cluster" headache or not. My doctor said that it is a migraine. However, in the past my migraines never did this. I feel disoriented when I get these. Please help. Deanna
Deanna <deannasep11@aol.com>
Tremont City, OH USA

I am not sure if what I am experiencing is clusters, but after reading this entire website, I am almost certain that I am a clusterhead! I have been in throes of a cluster all day, on and off, and this has been going on for about 2 months. Saw a doc over 2 years ago for this, and blah blah blah. Saw my newer Doc last Wednesday for this, and he said it was a migraine. I am so glad to read everyones descriptions; it helps me to know that even though what I'm going through is rough when it hits, I am not the only one. When my headache is coming on, it makes my eye feel like it wants to sneeze, then waters and wants to explode or implode,then my nose drips, and congests. When I am in the middle of a headache, I get so anxious and almost scared of my own reactions. I never know if I want to throw up, lay down, walk around, rock or curl up like a dead bug. All I know is this....you guys and your postings have made this all make some sense to me. Thank you
Barbara <tallbarb34@yahoo.com>
El Cajon, Ca USA

It's awesome to know I'm not alone and to know that my symtoms are real. I had to self-diagnose myself because none of the doctors I had been to could tell me what it was. No one in my family truly understands what I go through. I'm glad I have a place to read, vent and know I'm not alone.
Lysette <dovemagic7@yahoo.com>
Miami, Fl USA

Hello, iv'e been a chronic sufferer for app. 4 years now and wanted to share some thoughts or theories with fellow sufferers. Last year I had 2 ephadueral cortisone shots in my upper spine for a degenerative condition which caused pain in my neck and shoulder. The shots not only eliminated my neck and shoulder pain, but also, eliminated the cluster headaches as well! The first shot lasted app. 6 months, when the neck and shoulder pain returned, so did the headaches. The second shot lasted app. 5 months, and the results were identicle to the first. This is an awfully strong coincedence. I believe there may be a link between my spinal condition, which, besides a degenerative disk problem, but also a genetic condition of a narrower than normal spinal column and the cluster headaches. Right now i am trying for a third shot- however the clinic has stopped this procedure, and their referral site cannot duplicate the same shots i have received, either in type of steroid or amount of steroid. I am currently trying to fix this problem and will update with my results. I do not know if this information is useful or not to all of you sufferers, but i'd be interested to know if there is a link here that may not have been discovered before. I do know this-the break from the unbearable pain i have experienced was absolute bliss for awhile, and if the pressure on my spinal column is somehow connected to the headaches, i have to consider fusion surgery as a possible 2 for 1 cure. My first symptoms 5 years ago were dizzy spells that occured at the same time every day that persisted off and on for about a year. These spells morphed into headaches that progressively got worse and worse over the years-4 to 6 per day, waking me up at night, left side only, droopy eye, etc., all the classic symptoms, and no relief after trying all the drugs, oxygen, techniques, et al. I feel that my spine condition, due to its degenerative nature, got worse during the last 4 years putting increasing pressure on my spinal column and, possibly contributing to the severity and duration of my clusters. One more thing, i have had mixed success lessening the severity of attacks by chewing antacids and excedrin extra-strenght at the same time-usually the antacid first, then the excederin chewed and dissolved in the mouth for faster acting (bitter, but very small price to pay). Hope some of this rambling helps, I appreciate any feedback
todd <fanum@comcast.net>
mn USA

What can I say that has not already been said, to try and live with this kind of pain just takes away the will to live!! I have suffered with CH for over 20 years and have just started a session... I just do not know how to cope with the next 6 weeks....I still have the peak to get through and my job entails hours of driving, in and out of the car to visit Clients... I won't manage ...
louisa <louisapieters@gmail.com>
Pietermaritzburg, KZN South Africa

After reading the mesage bord, The thing that stands out is people are going to the wrong Doc.If your Doc gives you pain killers and Imitrex Go to a Doc that knows how to treat the beast. I went thru 12 drugs befor they found the right combo. Pain Killers won't work with out support of other drugs like verapermill,depakote, ect.You can't stop it but with the help you can controle it.
cris <haroldcrisman@comcast.net>
bloomfield, mi USA

I have rarely ever had headaches, but for the last 6weeks i get 3-6 per day. They seem to get worse each time. They last 45min to an hour and a half. Always the right side of my head from my eye to ear and down under my chin. My eye will water and close up a little. They go away as fast as turning off a light switch. They wake me up in the middle of the night,make me cry like a baby, moan and holler. Right before they go away i get short bursts of spasims 2or3 seconds apart. It is the worst pain i have ever experienced in my life. It feels like someone is driving a spike down into my eye. I get down in the floor, i squeeze my head as to bust it open. I have hit myself in the head and banged my head on the wall. I have been to the doctor 2 weeks ago and he thought is might be sinus headaches from a sinus infection. He prescribed me Augmentin antibiotic, and lortab for pain. I went back 1 week later, the lortabs did not work at all, he then wrote me percocet and has me set up for a MRI on monday. The percocet seems to help. I can drink a vodka drink and have a headache within the hour. I dont drink anymore vodka! I drank 5 beers yesterday, and sure enough i felt one coming on. I took the percocet and never got the BAD headache. From reading info on this website im pretty sure i am having Clusters. I will talk to my doctor tomorrow and hope he knows about Cluster Headaches. If not, maybe i can find a doctor in the Birmingham area who does know about them. Thanks to this website maybe i can figure out what to do about these Killer headaches. If anyone can suggest a good doctor, I'm all ears!
mike <n2dirt@att.net>
gardendale, al USA

First visit to the site and my first realisation that Cluster Headaches are what I'm now positive I'm getting. It's such a relief to know I'm not going insane and there are other people out there having the same experiences! Misery loves company and all that - but the messages and info on this site do make me feel positive that there are things out there that might work.
Sue
UK

Hello,hello,hello! Been a clusterhead for years.I can remember as a little boy of 13 waking up with something wrong with my eye,had a weird pain in it.Been episodic for the last 20 years or so!! I am on the merry-go-round for meds and shots. I am in an episode since feb 9.2-4 attacks a day. It usually lasts for three months.Please message me because I can use the support!!!!! For all of you fellow sufferers my heart goes out to you. I know what your going thru!! Hang in there as best you can. Don't let the beast win!!! Also am interested in the eye nerve block.lol Jesse
Jesse Smith <Smithdoor78@yahoo.com>
Lebanon, Oh. USA

So...my episodes started back in September of 08' and still to this day(Feb 26th) I am having issues. Ive been on EVERY antibioticknown to man to fix my "sinus infection". I cant get a CT scan because my insurance wont cover it...at all...so its out of pocket or nothing. So nothing it is. This website made me feel a little bit sane again!!!! I have the headaches mainly on the right side of my head and behind my right eye. Some (most)of the time I feel a fullness behind my eye and sometimes one of my pupils dilate and Ive been thinking(honestly)that I have a brain tumor!! So to read that others may be feeling the same definately helps with my sanity!! Thank you sooooo much for making this site! :)
Christi <tuffy73@gmail.com>
FERNANDINA BEACH, FL USA

I started getting my cluster headaches at the age of 20. Its been ten years now. I'm used to the oxygen treatment. I've been taking ergotomine treatments while living here in Athens and I'm not sure if its a good idea. I did notice that I have more clusters with oxygen then I do the ergotomine. Any suggestions? Kris
Kristina <dankris10@msn.com>
Athens, Greece

Just realizing what is happening and there could possibly be something to help. It has only been 10 year. Been going through hell with no answers. The search continues.
John Szabo <szabo_john@yahoo.com>
Wetaskiwin, AB Canada

1972. I was working in the garage, and noticed a funny tingling on the right side of my head. Within minutes it progressed to a stabbing pain, like a knife in the eye. I had been introduced to cluster headaches. Through the next 25 years, I had all the classic symptoms - trying to knock myself out, crawling around, whimpering and crying. By '77 they reached the maximum. 4 hours of unadulterated pain with an hour or 2 of respite. I had to take my graduate record exams in the throes of a headache. One eye blurry, nose dripping on my test papers. The pain must have helped, since I did well on the test. This continued for 20 years. I had tried ergotamine, honey under the tongue - nothing worked well until I found a website suggesting a combination of Prednizone and Verapramil. I sent the info to my doctor, he prescribed it. Dang it worked!!! I haven't had a cluster headache in 10 years. I had heard they generally diminish after one reaches 60, but I got mine to go away before I turned 50. I still get the "aura" that used to precede an attack, but no headaches. For those with this affliction, have hope. It will pass. Ken
KEn Schmidt <bisonjump@hotmail.com>
Anaconda, MT USA

I am a cluster headache sufferer and a doctor of pharmacy 2009 candidate. I usually suffer from about a 5-7 week cluster starting in March but I have suffered multiple clusters in one year's time. My treatment has varied from being untreated for the first few clusters of my life to a treatment plan today that allows me to function at work everyday. I have tried multiple medications with some failures and some success. My life during a cluster went from unbearable when I was not treated appropriately to annoying but functional with my treatment today. If you have any questions about my specific treatment path or medications that could be helpful for you, contact me through e-mail and I will try to respond in a timely fashion with my professional OPINION. I base this opinion on my personal experience and evidence based data (randomized clinical trials... etc) that may not be available to the general public. If I had the direction that I may be able to offer you, then I wouldn't have suffered as much for the first three years. Be sure to add a subject of cluster headaches to the e-mail so I don't think that it's junk mail. Also, I am currently on rotations at a hospital in a cardiac setting. I do not work for any drug companies and in no way would benefit from offering opinions on any medications or doctors.
David DeiCicchi <David.DeiCicchi@stu.mcphs.edu>
Boston, MA USA

At last, people who suffer with the same thing. I didn't know there were so many other people. I think I am finally over with episodes. This time they only lasted 3 weeks. I have had the worst month ever. The only thing is my doctor is awesome. He went on vacation while I was in a cycle and he said don't hesitate to call so he could adjust the medication. Love him. I started with the cycle when I started vacation from work. I then got the flu and was in bed for 2 days. When I was finally over the flu that night I had the worst episode ever. My husband works third shift so I was home alone. It started at 7pm and lasted till 2 am. Thank goodness after 2 hours the burning stopped but the sharp pain in my right eye wouldn't stop. I am surprised I can still see out of that eye. When these start my husband understands but then I think it gets old after about a week. He doesn't understand that I don't want to go anywhere for fear of getting one when Im out. Mine used to be strictly at night within the first 2 hours of falling asleep but now they sometimes occur at any moment. Its weird. Now when Im in a cycle and one occurs I go into panic attacks because I can't take it. This makes them worse because my heart starts racing and I want to vomit. My fear of these are that intense. Also I can't stand it when people compare them to migraines. Hate it Hate it. They don't understand that these are not migraines they are worse. I would not wish this pain on anybody but I do wish they would understand. I think they think I am making it out to be worse than what they really are. IM NOT. Anyways today I am breathing a sigh of releif because I believe my cycle is over and I can be normal again. For those of you who go through longer cycles I really am sorry and I do feel for you. I myself often wonder what I did to deserve this. I pray and beg and make deals to be a better person just to make them go away. I also wonder if these Clusters play a factor with the immune system because it seems like when I am done with a cycle I wind up getting sick with a cold or a virus of some kind. That is what I have now is a cold. But I tell you I would rather deal with a cold any day then the headaches. Well this is it for now, I am so happy to have found this site. Thanks Debbie
debbie swisher <tootsie49@hotmail.com>
kenosha, wi USA

When are 'they' ever going to come onto this Guest Book and read these entries and AND HELP US? "Just legalise LSD and Mushrooms for us to use" "Why cant we be pain free too and live a normal life". Cheers to everyone - hang in there.
Kris <noed28@gmail.com>
Perth, WA aust

Well my 8 weeks just ended. Another episode done. Gotta tell ya this one was differant peaked at week 6 till week 8 not used to that. got so bad my neck and back made them worse. its been 24 hrs and no beast. so there is hope and yes for those of us who are cyclic it does end. To those of you who are chronic my heart and prayers go out to you and your family. one last thing i want to tell all family members thank you for your support even though we cant say it at times and its so hard to see thank you for being there for reminding us to eat to drink to listen to the sobsand to have to watch. thank you
Jeff Gray <siamessedream@hotmail.com>
W.V.City, UT USA

I have been having the attacks for about 30 years off and on. I seem to have 2 sets a year, and they last for 3 weeks, all triggered by the act of falling asleep. If I fall asleep at 10:00pm............I will wake up at 10:25 at about a 2 and within 2 minutes I am at a 8. I wake remembering that I had been dreaming....and that is not right....REM should not happen that soon. Everytime I pass out I get a fresh one.....I am on night 7 with this episode. I learned that OTC pain relievers only cause severe rebounds so I stopped that a couple of years ago. My treatment plan now consists of covering my face and neck in Ben-Gay and just start praying and rubbing and rocking and then hot water packs on the face and then vicks in the nose.....all the time massaging....never stopping. During the day I rarely get them.....only when sleeping....and 4-8 a night. If I just never had to sleep again.....I also use professional massage to try and break the cycle....can't tell you if it works.....but it works enough that when the cycle does break.....I credit the massage. I have read all these posts and am just scared to death to take off on the trail of the meds that you have been forced to try by these doctors. I have had these for 30 years, but until finding this site.....I had no idea so many people were just like me. Not sure if I am strong enough at my age to continue to battle by myself....so I am trying to figure out how to go the medical route, but am afraid to even make it worse from what I am reading.....confused on night 7.......but I am leaning the terminalogy you guys use to describe the "beast". lol....
Ron <ronwallin@comcast.net>
Acworth, Ga USA

Thanks for being there! It is so nice to be able to send someone to your home page and let them read the comments I can't put into words, so they might understand a little of what I'm going through. I guess what all of you go through. I am a 48yo male, divorced. 6'2 210lbs healthy.. My CH started in July. I thought I had a tumor behind my left eye trying to push it out. The pain goes through my sinus, jaw, temple and even my teeth. The most pain that one can deal with and live. It took 2 months to get in to see a neuroligist. The worst two months of my entire life. I wanted to die each and every day and night! I sleep with a pistol under my pillow. I walk around with a bullet in my pocket reminding myself that there are always options! The Beast won"t win!!! The shadow under my eye won't go away. Constent pressure. I am so afraid its going to go full blown at any second I can't move.I have taken so much medication, I don't know what to do next. I just got home from 3 days in the hospital and there back... Thank GOD I have kids and can't commit suicide.... I lost my Dad when I was 11. Can't do it to them... I went on FMLA for 6 weeks from my job of 20 years. The day I returned they fired me... I killed myself for that company. The owner doesn't like his associates to show weakness. COBRA is 850.00 month These things won't go away. I can't even imagine going out and looking for another job. The headaches come every night and everyday to visit me. I am afraid to go to sleep. I know at 2am it will begin again. 2am 9am 4-5pm and constent pressure behind my eye the rest of the day. The doctor told me that 85% of sufferers were cured or broke there cycle with this iv drug THG every 8 hours for 3 days. Guess I'm the 15%. I have oxygen at home, it helps shorten the headache. Drugs. Imitrex injections, B-12 Injections, Butalb-apap-caff, Butalbital-caff-apap-codine The imitrex helps a lot. The problem is my insurance only pays for 8 a month. I don't know if any of you have other suggestions, i would sure appreciate the help. The water x 3 I drink 10-16 oz bottles of water everyday. I don't drink soda. I don't drink alcohol. Is there any disability insurance while i'm not working that anyone knows of? I am collecting unemployment but it doesn't even cover my mortgage. Help would be great. I am going to go read your archives. Thanks again for anyone who reads this. I hope you understand.
Jim Jones <plantguy7@msn.com>
Las Vegas , nv USA

I have been to this site a bunch. I've had clusters for 8 years now. For the past 7 years it has been almost daily. I'm in that real rare group of clusterheads. I found this site and It helped just to know some one else knows just how I feel. The fun part is I have drug abuse issues. At the time these things started I'd been clean for 19 years. I won't go in to that beyond saying that it makes pain management tough. I'm going to go in to Shands Hospital in Gainesville Florida for deep brain stimulation on Jue,3 2009. I'll let you know how it goes. The Doctor gives me a 60 to 70% shot at some relief. I'll be the first person they have used this operation for cluster headaches. It has taken me over a year to get them to do this. But I might get my ability to work back and belive me I need to get back to work. my children think I'm a bum since except a half closed eye and a runny nose I don't look like there is any thing wrong with me. Well at least the pain management doctors at Shandsare helping me a lot. They understand where I'm at with addiction and cronic pain issues. Along with all the rest of it. Have I mentioned that I'm greatful to live near one of the most advanced teaching hospitals in the world. good luck evey one. I know it doesnt help much but when your pacing up and down or rocking in a chair pounding on your head to get some relief, your not crazy or alone your just sick, and if you look long enough there might be a solution
bernie s <0bernie0@gator.net>
gainesville, fl USA

OMG. finaly people who understand what Im going through. Trying to explain a cluster to a non cluster makes me feel like Im from Mars. I can't believe I found this site. Thank you, thank you, thank you.
Deborah <deborah.clune@gmail.com>
Congers, NY USA

Has anyone else tried psylocybin? I was in the middle of an episode last March when i stumbled on some research that said Psyl. could end a cycle and if taken once a year it could stave off other cycles. Just so happens i knew a guy that took mushrooms for religous purposes and was able to get a hold of some. I took 1 gram and 2 days later my episode ended. I dont know why the US isnt doing clinical trials. I used triptans like everyone else and yeah they helped a little but they arent made to take 3 times a day and are very very expensive as my insurance only covers 3 pills a month. Like i said took mushrooms once, havent had an attack for almost a year. THIS WORD NEEDS TO GET OUT!!! GOD GAVE US A CURE AND WE OUGHT TO BE ABLE TO USE IT WITHOUT PROSECUTION!!! All in favor??
Daniel <clusterstopper@gmail.com>
ok USA

Hello. I'm not sure if anyone really understands, and I haven't been throughout this entire site. Forgive me, but my head is pounding. I've had these headdaches since last Wednesday. That makes an entire week! I suffer from migraines as well. But I knew that this wasn't a migraine! This was something ...evil! With my cycle approaching and the huge amount of stress that I've been under, I could understand having a migraine. But like I said, this was no migraine - I was fine with light and sound actually, to an extent. That's definately not the case with my migraines. Also, the pain was different- I mean it was severe as all get out, but what I didn't understand was that it wasn't constant.. every now and again it would settle... let me breathe.. and then attack me all over again. Finally, I also knew that it wasn't a migraine, because NOTHING was working - that is permanantly - not immitrex, not the breathing/relaxing techniques.. nothing. I really hate to put this out there like that especially over the web, but maybe someone can research it: I'm a 26 year old virgin, and a few times a couple of friends (of course they were guys) teased me about having headaches because of all that built up pressure down there. I hate to admit it but I got so desperate during a migraine once, that I actually experimented with that concept, and I must say, there was some accuracy with their logic... but that didn't even work this time. I want to sleep, but I can't.
Teesha <ow.matesha@yahoo.com>
AL USA

Hi Norm! Glad to see you found your way back :) Come on over to the message board and introduce yourself on the "Getting to know ya board". Wish you could've made it to the meet and greet, maybe next time!
Jen <darryljen@wildblue.net>
Supply, VA USA

Please, Help me! I am about to get fired from a Oncology practice that I have worked for 7 years. They don't understand and I am the sole income of a family of five and my doctor thinks it is anxiety. I have numerous other medical problems including tremors, herniated/Enface Lumber, colitis, a possible ulcer, cyst on my liver and calcification of the prostate. I am trying to get on long term disability however my primary doctor will only sign off on short term and then I am done. I have been fired from numerous jobs because they just don t understand. Can anyone give me advice? I can t even find a decent neurologist in the Tampa Bay area! I end up knowing more than they do
Len Barron <len_barron@hotmail.com>
Largo, FL USA

I am a 23 year old female and I am suffering from cluster headaches. I started getting them when I was a junior in highschool. My clusters usually last 2-3 months and then I am fine for the rest of the year. I feel so alone because when I describe the pain I dont think people believe me or understand. They just think that I am exaggerating. I was finally diagnosed my third year of college and actually had to drop out because I wasnt able to function. The cluster had been the last 2 months of the semester and I was dibilitated!!! I pray that I dont have any again and every time I go into remission I hope that I will never have to experience the pain. People tell me that I just need to calm down and try to lay down and get some sleep but they dont understand that that makes it much much worse. I have even had panic attacks at the thought of having another headach. I just need someone that understands what I am going through. Even a better doctor because all mine think that I am out to get drugs. All i really want is to see light at the end of the tunnel and there to be hope for me!!!!!
Claire <mccalle1@nku.edu>
Florence, KY USA

Greatings from Portugal! I've had headaches since I was 15 and my doctor had me medicated for migraines, until yesterday, when she finally got to the conclusion that I suffered from cluster headaches (I'm now 22 and passed 7 years of my life with pills that didn't work properly). Oxygen made wonders to me in 15 minutes and the new pills are more effective than the older ones (I was taking naratriptano). It feels great to know that there are more people with this condition (I don't know anyone around me that has it)... Usually people look at me with that disaproval "don't pretend you're in that much pain" look and it's hard to explain how terrible this pain can be! Some times you can look a little crazy walking around the room or pressing your head against the wall, hoping the pain will go way... Some times you wish you could put a bullet through your brain... When the pain comes it feels like someone is trying to pull my eye out with a spoon... I leave here a special hug to those of us that are chronical, like me, and are in pain every 15 days, for 4/5 days, all year round, non-stop, no rest...
Mara <mundo_das_trevas@hotmail.com>
Amora, Portugal

Hello. Well its been 3 years since i last had to do this. Was just begining to think just maybe. But nope skipped 2 episodes and its back. Wow been doing this for 20 years now and got to tell ya some days i feel like it just can't get any worse. But i'm stubornand not that bright lol and i keep going. I have a good friend at work who gets them also its wierd to meet someone with clusters but its nice too knowing that yeah he does know what i'm going thru. most of the time i feel bad for my wife who has to sit there and just watch me knowing she can't help or even get to close some times. But for those of you just starting dont give up find that something that gets you thru. For me its now having a pain tolerance so high i get to sit for hours in a tattoo chair lol. Take care out there
Jeff Gray <siamessedream@hotmail.com>
W.V.City, UT USA

Hello all! My optometrist, bless her, diagnosed me with CH just last week. After reading some of your entries, I am lucky to be diagnosed so quickly. My first attack was Christmas day 2008. It only lasted 4 days. I actually thought I might have pink-eye because my eye was so red, although I had no other symptoms. Last Sunday, they started again, this time much worse. The pain has been getting worse every day, but I keep hoping tomorrow will be better. I am terrified of this illness. I have 3 kids and a full-time job that don't stop when I have an attack. I am trying Zomig, to no avail, and now Tramadol. My doctor suggested a DHE drip, but I live 30 minutes from the hospital. The attacks last from 25-60 minutes, so that isn't a real solution. What has triggered these headaches? I have had migraines for years and have learned how to manage them. There has to be something that I did wrong to have gotten these? I can live with a red eye and dead pain behind it if I can just learn how to forego the attacks. For all of you with children suffering these, my heart goes out to you! It's bad enough to have these as an adult, but a child...I can't imagine. And as a parent, I'm sure you feel the same as I would. You would take the pain if they could live without. Thanks for listening:)
Angie <angelab@chorus.net>
Glen Haven, WI USA

I've been an episodic CH victim since around 1992. My first attack hit me while I was stationed in Italy, a few months after I broke my back after a parachuting accident. I had absolutely no idea what the hell was going on - I thought it was something to do with my back injury. A friend gave me some heavy duty narcs, but you know how well those worked. After being hit with them for a couple of weeks, I finally saw a PA who prescribed me benadryl...basically, I was now a drowzy guy with a horrible headache. Don't you love creeping downstairs in the middle of the night so you can bang your head against a brick wall...I have scars on my head from that. Fast forward a couple of years CH free...they start again - this time I'm in Germany. The local Doc tries having me snort lidocaine gel (god that shit tastes nasty, and doesn't work) I manage to steal some O2 from the clinic I worked at and they helped, but the little tanks die before the CH is gone, but there's some relief. I got a RX for Cafregot 100mg (Ergotamine & Caffeine) and that has been my drug of choice since. The only problem is you can only take ?10 per week...I guess I OD frequently. God only knows what the ergotamine is doing to me. Nowadays, I have O2 at home, an O2 concentrator that I sleep with..until the mask slips off and the pissed-off battle dwarf (with battle axe and war hammer in hand) shows up in my skull again. This last year it seems that the 'episodic' is a thing of the past as I get them at least twice in any 24hr period. Luckily, I feel the aura coming, so I pop a cafregot and find my O2. One day I was doing some shopping, didn't have anything with me, so I spent 45 minutes sitting in my car beating my head against the steering wheel and scaring passerbys with my insane man impression...I'm just glad no one called the cops. I'm now in the UK visiting family. A monster CH hit on the flight...no O2 of course and I've been dealing with regular dwarf visits since arriving...I fly back Tuesday and I am sooo looking forward to the flight. 39,000 feet and cluster headaches seem to go together so well. Hang in there my brothers and sisters - WE SHALL PREVAIL!
Lou Stanton <lstanton@satx.rr.com>
San Antonio, TX USA

I began having my first Cluster Headaches in 1985, (I was 26) when I was on a trip to Tunisia, Africa. Of course back then, and as many as others had been, I was misdiagnosed as having sinus issues. The Physician s Assistant (PA) that was assigned to my team thought it was the Poppy fields that were in bloom that were causing me to have these sinus headaches . Fortunately for me, he put me on a Prednisone regime which broke the cycle of the Cluster Headaches. I had my next CH episode around 1995. Still at the time undiagnosed, I medicated on my own by chewing aspirin and taking allergy medicine. I also drank lots of beer which I found out later is a trigger for CHs. It helped relieve the pain some, and again fortunately for me, I never went a full 3 month cycle. In the fall of 2000, these headaches were back. The Military Facility (outpost) that I was working at had a PA. This guy had extensive Military Medical experience including having served in Vietnam. He was the one that figured out that I was having CHs. He put me in for a Neurologist consult to figure out what they could do for me. In the mean time, I had been to this website, (Clusterheadaches.com) and discussed Oxygen with the PA and how you all stated it was your number one relief for pain. The PA stated that this made sense and started feeding me O2 bottles daily. What a relief. Once I got to see the Neurologist, we sat down and discussed my symptoms. He had an intern with him whom sat quietly and listened. When I was through, the Dr. looked at the intern and stated: You can look it up in the book, but what this soldier is describing is textbook Cluster Headache symptoms. This neurologist turned out to be a great and adventuresome guy. I had already printed the medical information from this website and all the Medications that you folks have tried. He went through the list one by one. If the drug did not work; he scrapped it and moved on to another drug. In the end, Imitrex Inhalers, Oxygen at the rate of 8 Liters per minute for 20 minutes, and a very hot shower are my number one relievers for pain. I try not to medicate throughout the day, saving/hording the good meds for the inevitable monster of a CH. At night I use the Butorphanol Inhalers, also a #1 Medication for me for these headaches. I use these at night due to how strong they are and the fact that I want to get back to sleep. I inhale one squirt, even though allowed 2, and then inhale O2 for 10 20 minutes. The pain goes away and then I pass out again for the rest of the night. During the day, believe it or not, if I feel an onset coming, I chew 2 Excedrin Migrane tablets, and usually the pain will go away on its own. If not, I go to my car and suck on the Oxygen for 10 20 minutes and then the CH subsides. It is now, January 2009 and I started a new cycle 18 December 2008. The Neurologist had already given me a pre-prescribed Prednisone regime for the next on-set of CHs; he did this the last time I saw him in 2005. I am averaging 2 CHs a day and sometimes 3. The good thing for me is that I am in the Military and I have good Medical support and benefits. I have Oxygen prescribed and delivered to my home and I have a great support mechanism to get the Meds when I need them. To this date, I am on Maxalt for prevention, Imitrex Inhalers, Butorphanol Inhalers and the Oxygen to battle these CHs. After reading most of your alls input here I am a little disheartened to hear that there are still a lot of sufferers over the age of 50. The Neurologist once told me they usually start going away after the age of 50. I will be 50 in July, so I will pray and hope there is an end to this madness. I will also pray for all those in the world that suffer from these suicide headaches and that there is one day a cure. I will also pray for those less fortunate than I and do not have the medical insurance and the medical support that I have. The way I look at it, the Military says I can stay in until I am 62. With these headaches and the support I get, I am not retiring until they force me out. JAMES SENDS
James <broncor1de@aol.com>
Pinehurst, NC USA

hi I'm 23 and my life just stopped 7 monthes ago when the cluster headaches nightmare started. I've tried the imitrex pills but they don't seem to do anything.I want to know if anyone feels suicidal durring an attack or is it just me? I'm not normally depressed or even sad! I love my life,I really do.
Renana <renanak@yahoo.com>
Jerusalem, israel Israel

...its nice to know that there are people out there that know what im going through. I havent met anyone else in SA that suffers from them or even knows what "cluster headaches" are. I was diagnosed 5 years ago and have attacks every year for a month except it been 3 months now and im on my second course of prednisone....
sean <sscharneck@gmail.com>
Cape Town, South Africa

hi every one, my name is cheruto 28yrs and from kenya. i have been living with cluster headache since i was under 10. i grew knowing it as Migrain untill three years ago.i now use oxygen and i must admit has help me alot.my cluster do start mostly in october but mild till feb-march, the worst time is from mid december to february. the shit cluster turned my holiday (25-4.1.2009) into a nightmare since i could not carry the O2 with me on the plane.The oxygen tend to be of less effect when its almost empty,or when the headache is in its peak (atleast to me)I have been told that i look like i have taken drugs with friends which explained why some people stare at me when am in public looking missrable with the pain. cluster is stress i wonder how have made it through the years and the fact that i will keep having it makes me feel sorry for myself.Has anyone ever had the cluster and by the time he/she get's to the doctor the pain is long gone and the doctor looks at you as if you are wasting his time? Thanks
cheruto <cherutoa@yahoo.com>
vienna, vienna austria

hello, everyone... i've been suffering clusters for so long i can't remembr the first time i had it... i dont use any medication mainly because the doctors in my country don't know what to make of this kind of pain. I have, however, discovered a way of taking care of an episode while its still in the initial stages- by kneeling down on all fours and with head forward resting on a pillow (position's important), applying medium pressure with 3 fingers of each hand to the top of the hollow of the skull. It may sound weird, but it helps control the pain within 7 or 10mins.
adam <whisp3r3r@hotmail.com>
dhaka, Bangladesh

Hi,I get migraines quite a lot and I came across this website looking for information about them. After reading about what cluster headache sufferers have to go through I swear I will never complain about my migraines again as they seem to pale in comparison. I feel debilitated enough with migraines, i can't imagine what it must be like for a cluster headache sufferer. I hope medical science will find answers to these problems but the next time I get a migraine I shall feel only empathy towards you guys and I will pity myself no more.
Chris <crip210@hotmail.com>
Cardiff, UK

Hey back again Just found this site a couple of days ago and put my "mark" that i was here .Thanks for the invite Jen I will try to be there would love to meet you . I just got over CH wich lasted for three days now and am soon to try to sleep. I know i did not say much when i first wrote in but now that i can i will tell my tricks that i have learned. Nothing special just have been doing it for last 34 yrs When i get that feeling i retreat to the shower weather fully clothed or not and sit under shower putting my mind on the water drops instead of the pain. I did however learn about oxygen therapy and can say it really helped me get through some of the CH that i go through . I usually get between 8-20 CHs aday when im at peak and as you all know can only take 2 Imirex injections aday By the way I was 32 when i found out about Imitrex and my Dr became a god to me he had just heard of this medicine but never scripted it yet I was his first although he still does not know alot about clusters what he does know he has learned mostly from me I also met a great neuro Dr and she now scripts me imitrex year round as to stock me up. she also put me on oxygen to fill the voids. My life is not always a bowl of cherries but i now can live with it. I also want to say that my wife is one hell of a gal as she has lived through this with me and never has complained Thanks Jan
norm s <Tazzzman@att.net>
St Louis, Mo USA

Hi and thanks for this site! IT is so nice to know that I am not alone in this fight. I have had CH's for 5 years now. Seems to be chronic these past 2 years. I have learned a lot today, as this is only my 2nd time on the site and 1st posting. Will definately be trying the testosterone testing in 2 weeks (next visit to Neuro). Was curious if anyone else has been or IS on Zoloft. I have read about the seratonin study. I got on Zoloft prior to these CH's starting 5 years ago. Could that have something to do with it?? I, too, am willing to do a study OR anything to help other sufferers. Have been on Depakote (1000 mg) for the past 2 years, not helping that I can see. During an episode though, the Zomig is my miracle. Will knock the beast out in 10 minutes. But, insurance will only pay for 8 during a 30 day period, which leaves me with Maxalt, which isn't nearly as effective. I am going to get the oxygen and try it. Thanks for listening to me ramble. I was mainly curious about the Zoloft and the seratonin (sp?) .. Andy
Andy Vernon <andrew.vernon@atcmail.com>
Charlotte, NC USA

Fellow sufferers: I have experienced over 5000 cluster headaches since 1973. I am now 68 and can't deal with them as well as I use to. For approx. 25 years I would get two bouts per year. One in mid winter and one in mid summer. Eacg would last 4-6 weeks and I would have 2-4 per day. The last 10 years they seem to only come once per year 9still 4-6 weeks) and have even skipped some years. I'm in my 2nd week of a new cluster andthey are driving me crazy again. I have tried oxygen. several types of drugs, hot showers. I can't stand any light or noise when I'm in one and seem to need to swallow a bunch of air(perhaps for oxygen) which I end up belching up the air endlessly until the headache is almost gone. I appreciate the opportunity to read about others and share my experience. God bless you all. Gary
Gary Bates <partners@rbggroup.com>
Cincinnati, OH USA

Hi! I got cluster headache when i was 20 years old. Now I´m 53. At first my doctor didn´t know how to help me, when i was about 30 years he prescribed imigran injections. When it was realy bad i could take 150 injections in 1,5 months time. Three years ago my doctor told me that he had seen an article in internet that said a study on ten cluster headache sufferer was treated with Gabapentin a epilepsi drug. He wanted to test it and we did so. Since that i can feel my attacks but no pain it´s heaven. Now its almost 4 years since i took imigran injection. If this can help any of you suffering out there ..... I can now se a light in the tunnel, didn´t think that ever would happen 5 years ago. Keep fighting the devil Tommy
Tommy Ronning <tommy.ronning@telia.com>
Karlstad, Sweden

hi there just thought i would say a little something i am 19 years old and i have been suffering from cluster headaches since i was 16 although a used to get really bad headaches when i was a kid so maybe i had them then as well but who knows as i was only diagnosed last year in November when my GP sent me to the hospital as he didn't know what else he could do for me. When i get an attack it can be just one side but i have had one and it's been both sided i always seem to grab my head and press real tight hoping it will go away but i doesn't i try lying dwon and pushng my head againts a pillow while pushing my other side of my head but a just can't lie down so i pace about the house and cry and hit my head and i snap at anyone who comes near me whether it be my mum or my boyfriend when he is over then it comes to the point where i just cry non-stop and ask why me? what did i do so wrong to suffer this or anyone to suffer this even? i would never wish anyone to suffer this its horrific it even comes to the point where i feel like ending it but i have to much to lose so i do what i do best and suffer but a just want to say to everyone out there i trully feel for every single person who suffers this is i no how it feels and a just only wish that someday may there be away to banish this horrid disease but one can only wish. well thats all thanks for reading x
Danielle
Glasgow, UK

Hi all Just wanted to make my mark. I have sufferd clusters for 34 yrs now and am still here on earth (thank god ) I really feel your pain as i read your letters it brings me to tears . I wish I could help every one of you ,but to no avail i cant even help myself. it sounds like every trick to coping with these wicked headaches has been written. i am a person of few words and will leave you all with this I am so sorry that any human has to live with these as i do and i hope for all that they go away so I pray for us all
Norm S <Tazzzman@att.net>
St Louis, Mo USA

Went for Botox treatment today. The doctor said give it five days it might work staying positive. Going on fourth week of cyle, 3 CH a day I pray that I get some releif.
Mike <mykgon76@hotmail.com>
Toronto, Ont Canada

Sorry for the formatting - obviously a poem that got automatically reformatted when submitted...
Hugh <hugh@wifamilyties.org>
Hartland, WI USA

I've had CH for 31 years (started when I was 18). Most recent episode started about 10 days ago. After my 5th headache tonight, I wrote this: The Beast The beast has returned; I know its ways Lurking now, silent Waiting for unsuspecting slumber. Then unleashed, searing fury Unbridled rampaged, bulwarks effortlessly breached Time my only ally. Unseen, unknown A mystery they say With apologies and ineffective offerings. The beast has returned Greed and avarice on its lips. We are too familiar. (c) 2009
Hugh <hugh@wifamilyties.org>
Hartland, WI USA

cluster headaches are slowly killing me.my father killed himself at age 39.i think he may of had ch but died while i was 2 years old.i know i tried to hide from my family so they would not see the intents suffering. people at my job think oh he is just having a headache,get over it..i have 6 per day going on 3months now.been having them 4 years off and on.im so sorry that i am glad to see others are able to feel my pain,but it somhow lets me know others are not killing themselves.i have lost all faith in god for letting us suffer so horribly.
sam fagan <samfagan@bellsouth.net>
lawrenceville, g USA

Just knowing this site is here has been a help. Knowing I'm not the only one. Finding out about pepper spray...amazing...finding out that I'm not crazy, just really in pain. Thanks
Paul <pdbrads@bellsouth.net>
Lawrenceville, GA USA

Hello Fellow Cluster heads, Allow me to tell my story. I have something to add that I have not found on this site that could be very helpful. I know it was to me. On October 8th I went in for back surgery. They fused L-4, L-5 and S-1. Now keep in mind I was already taking 150-200 mg of Hydrocodone per day. I know, I told one doctor that and he didn t believe me? Told me I would be dead if I were taking that much. Well, here I stand. Surgery went great, woke up and the 10 years of nagging (pain level of 8 last 6 months) lower right back pain was gone! I had already set up a pain doctor cause I was not going to leave my post-op pain to the surgeon. They will give you a handful of Percocet and tell you to tough it out. Now, I wish I would of. So, old Doctor Pain starts me out with 40 mg of oxycotin 3 x a day and 2-15 mg of Roxycotin up to four times a day for breakthrough pain. That s 240 mg per day! The first two weeks I really don t remember. But, by the third week I was up and walking a ¼ to a ½ mile a day and on the road to recovery. (So I thought). Around a month into recovery I started to suffer from the headaches, so bad only you people and I know how debilitating they are. I started out with the surgeon because I thought it was surgery related, spine fluid leak? WRONG! Dr. Spine took an x-ray and said whatever I have; it is not from the surgery. Well I said, I know there is something wrong with me and what could he do to help figure it out? He actually replied I am just a spine Doctor? Which I kindly responded, So, when you are being sued from my wife because I killed myself because of these headaches your defense is going to be I m just a spine Doctor . Needless to say he released me from his care, which was fine by me. Now another week goes by and I go back to Dr. Pain and of course he up s my meds and said it sound s like I have sinusitis. Another week passes and I get an appointment with Dr E.N.T. Took a CT of my face and said I have a little blockage but nothing that should be causing headaches that bad. He gave me a script for Midrin, sent me on my way and said find yourself a good neurologist. I call my G.P. who is a great old country doctor who I love dearly but he is a family doctor and is use to dealing with aches, pains, and the sniffles. He does find me a neurologist but he is like 3 weeks out. What could I do? At this point I am about two month s in to them. On the third night of an extremely bad attack I break down and have my wife take me to Vanderbilt s ER. They immediately put me on a drip of this and that ending with Dillauded. Doesn t even touch it. Keep in mind I have been back to see Dr. Pain a couple of times and he has now switched me to Morphine and Morphine sulfate, 200 mg per day, no help. Seeing a pattern here Opioids. While at Vandy, they do a MRI of my brain and tell me I have multiple small round foci lesions on the white matter of my brain . Something they see in people who have had migraines for 20-30 years? The only headaches I ever had in the past were self induced from too much fun the night before. They want to send me back down for a MRA (with contrast), Being claustrophobic and barely making it in the tube for 28 minutes for the first time, I decline. A week later I go to a Bio-Imaging place with an open MRI machine. The lesions were gone, turned out they were hot spots! You could actually see the pain, which just blows my mind. It is now December 28, 2008 and I still have no idea what is happening to me. During a 3 day bout I was praying for God to just take my life, I could not take it anymore. A week before the 28th I spent about 6 hours on the net researching my problem to the point of vomiting. Back to the 28th, somehow I go to Wikipedia and type in Cluster Headaches. The first thing I see is an illustration of a little devil standing on a man s head, he is holding his left eyelid open with his left hand and punching him in the eye with his right fist. OMG, IT WAS ME! It was about a 12 page article, every time I re-read it, it was more me. I was text book. The good news is that I was finally diagnosed, not knowing is half the battle. Once I found out, it was like somebody lifted a huge weight off my shoulders. Now, the bad news, it was Cluster Headaches! In this particular article on Cluster Headaches in Wikipedia they theorized that one cause of C.H. could be low testosterone levels. Well, what lowers your testy levels? Opioids are well known to lower the libido if you know what I mean. Sex is one way to raise your testy levels, I told my wife I would not enjoy the sex and it would be purely medicinal? She wants a prescription from the doctor stating so. Lol. I ceased taking all opioids of Dec. 28th. Which was very dangerous and I do not suggest that anyone try this, going cold turkey can kill you. I was told by Dr. Pain that it was a phenomenon that I did not go into detox. Now it is December 30th and I am at Dr. Neuro s office. I decided to play a little game just to see if he new his stuff? I gave him all of the text book symptoms I was experiencing and he resounded Sounds like you have Cluster Headaches, ever heard of them? YES! YES! YES! I have heard of them. I have had done nothing else over the past two days but learn everything I could about this Devil Disease. Now Dr Neuro had not heard about the low testosterone theory but was very interested in learning. He ordered lab work to test my testy levels and see where there at? They have many different ways to treat this, i.e. patch, shot, oral. My next appointment with him is not until 1/16/09 and they will not discuss test results over the phone? Is it just me or has everyone been through this? It is now my 8th day opiate free and I have to tell you I am feeling much, much better. I have only woken up once (yesterday) under attack and it is still going on. Luckily it is a mild one, but even the mild ones are killer. I have high B.P. to begin with and have been taking 40 mg of lisinoprol which keeps me at 135/85. With the so called Shadow s going on 24/7 my B.P. has been running 160/110 with spikes while under a full blown attack of 180/140, Yikes! So Dr. Neuro prescribes me the Verapamil at 240 mg per day as the preventative. As an abortive drug he gives me Imitrex but tells me I can not take it unless my B.P. is 150/90 or lower. The two times I have got my B.P. that low I have went ahead and took the shot, seemed to help but it is hard to tell? Now after telling him for 15 minutes that I think the opioids are to blame he prescribes me Batorphanol NS. I get home that night and the faucet is turned on and the nose is flowing. B.P. is two high for the Imitrex so I take two snorts of the Bator, within 5 minutes I was wasted (high as a kite). I googled it and it is basically liquid opium! I guess he was not listening during the 15 minutes we discussed the cause? It did work though; it stopped the attack in its tracks. As soon as I find out if my testy levels are low I will let everyone know. Morphine is quite often prescribed as a pain med to battle these headaches. So it could be the very thing you are taking to relieve pain that is causing it, it is a viscous cycle. I have had several good days this past week and think I am breaking the pattern. For 3 month s the only time I left the house was to go to the doctor s. I have lost 25 pounds (good thing) it was pretty easy. Don t eat for two month s and vomit (from med s) a lot. I am very fortunate that I work for a cool company and a very understanding boss. I hope that this may help some of you or even just one of you. Thanks for listening to me and I will definitely report back in when I get my labs. THINGS WILL BE FINE IN 09. PEACE AND LOVE TO ALL.
Craig <canshutz@omnisource.com>
White House, TN USA

I am writing this as my episode come. It is a light throb on my nereves above my left eye. It always starts there and works it way around the rest of my head. I get hot flashes and my nose bleeds. They usually last an hour or so but it is about 4 - 6 times a day. I have been getting these cluster headache for about 10 years now. I take no medication for them. They only last for 2 weeks, so I feel lucky compared to some that has it longer or comstantly. I just let it cause me pain until I know and feel it is about over. I learned that over the years because I cannot fight it. God bless those that cannot bear this and praise to those that let it pass. I do hurt but know I will hurt more if I let it take over me.
Aisle Childs <Aisle72@sbcglobal.net>
Chicago, IL USA

Looking for help. I am a newlywed, 50 years young, work full time but these headaches are full time also. My husband tries to be supportive. I want to be left alone at work during the peak of the pain. My PCP ran the MRI, on Topamax already, started Verapamil and Phenergan plus Axert prn. Still getting headaches everyday. I actually went years without headaches and now they are back. Any suggestions? If you email me please write 'cluster headaches" in the subject so I will open the email. Thank you!
Deb B <debbieangel1@bellsouth.net>
Greenville, SC USA

I came here first in... 1998 I think. I can't believe that some of the original people are still here just from taking a quick look... Jonny, Linda H., Echo, Charlie... I have been pretty lucky, this is the first time I have had an episode for 3 count 'em 3 (instead of 2) years. I'm torn about seeing so many names I know...it's great, but it is also terrible. I'm treating this time with ice and salsa and capsaicin... course, I'm only a couple of weeks into it, but I've never been big on the drugs. Saw on the TV show "House" though, that they are aware of the shrooms now! I still won't do them though. You all have a Happy and Pain free New year!! Love, Sherry (sherryberry, littlerags and whatever id's I used)
Sherry Ragland <us420years@gmail.com>
Fountain Inn, sc USA

Hello all, I had no idea there was a site like this out there. I have been suffering now for the past 3 years, I never had a headache that wasn't self inflicted. I sustained some back trauma (I had a disk removed and I still have a couple broken), and it was the last time I hurt another disk that these headaches started, however I don't know if there is any link. There are times these headaches are so bad, I can understand the reason why these are called suicide headaches. My doctor tried me on a couple medications that did not work, but when he sent me to see a Neuroligist I was given Verapamil. I take 260mg pills, (they are blood pressure pills but I dont have high blood pressure so I have to keep an eye on my heart)and they have helped dramatically. They don't always work, and I go through periods where all it seems is they take a bit of the edge off, but I have Oxegen in the case the pills don't do the trick. I have to take one every twelve hours, and if I miss one, I am almost asking for a headache, but I thought that some of you may want to give it a try? I did not see it listed as a method of treatment on this site. Now a couple questions 1. This Imitrex, how well does it seem to work? Does it work right away? I was never prescribed this as a method of treatment. 2. Do any of you find if you do a workout or hit the gym, that it is almost a surefire way to get a cluster headache? This is my biggest problem, I have to work out just about everyday because of the trauma I sustained to my back. It is not something I have a choice in, if I dont do my workouts, then I become almost imobile, however almost everytime I do a workout I trigger one, the pills help, but it is still a very serious pain, and if any of you have experinced this and could offer any tips, I would be very appreciative. I wish you all a safe holiday season, and hopefully we find a way to eliminate these evil Cluster Headaches during our lifetime!!!
Steven Babcock <buddysmith24_7@hotmail.com>
Milton, ON Canada

I have been suffering with CH for the past 3 years. I have been to all kinds of Docs and have just found out what kind of headaches I have. The pain is SO BAD!! I have one yesterday which landed me in the ER for 5 hours. It was worse than giving birth. I swear!! The pain is on the left side of my head. Feels like my left eye will pop out of my head at any minute. I know that mostly men have these kind of headaches, I just pray everyday that my son NEVER gets these. The nero just started me on the verpapmil, hope it is going to work for me. I was so bad this past summer that I left work every afternoon and cried all the way home and went to bed. But no sleep, just up and down all night and rocking, not sure why the rocking but I always do that when I have a bad one. My family hates this sickness.........husband tries to understand. As you all know you miss out on a lot of family things. And I know my friends are so tried of me always having a headache. If anyone on here knows of something that I might not have tried please email me.
Mary <hancock@scottsboro.org>
Scottsboro, Al USA

I am 52 and started suffering from headaches in April/May this year and was diagnosed as suffering from cluster headaches 2 weeks ago.Iam finding it difficult to come to terms with the fact that I may have to suffer this for the rest of my life.
suyin gail dixon <sgdixon@btinternet.com>
welwyn garden city, hertfordshire uk

Hi I suffered from clusterfor 10 years 3-5 times a day.Three months ago they found that a tooth had very long roots it trigered the cluster.I had it taken out an it is Gone!!!!! Please have your dentist make some x-rays.
Hernando Molina <hmolina@cfl.rr.com>
Orlando, FLO USA

I am a clusterheadacher since I was 17 an now i'm 56! I have crisis Once time during dthe spring. Are other people with this kind of periodicity?
Renato Moraes <limamoraes@uol.com.br>
Sao Paulo, SP Brasil

10 years never had a clue until today!
Sean Loughery <intheclutch1113@yahoo.com>
Kearney, Mo USA

this just started i would say about 5 months ago.every day @ the same time very early morning hours.say between 2 am thru 5 am depending. i do suffer from anxiety disorder for most of my life about 25 yrs. depression also overcame that. but these headaches never had. only one side the right side. to tell you this it is god awful.i eat advil like candy or take a nerve pill no help. last some where between 20 minutes to hour.last nite had 3 of these 1 @ 2am,2nd @ 4:30 am,3rd @ 6:15 am i was really stressed. for some reason when i have dreams i can feel it coming because it jolts me out of sleep. and there is no stopping it when it starts. like someone jabbing you in the eye with a hot pocker or your brain is going to explode..now i am going to speak my dr.thank god i work for one. sincerely debbie
debbie <dsloginski@yahoo.com>
hawtrone, nj USA

I have been 9 years headache free but on Dec 2, I woke up at midnight with the worst headache. I new instantly they were back, the hammer pounding my head, the watery eyes and runny nose. It is now Dec. 16 and I have had a CH every night. I just one night uninterupted sleep.I have high blood pressure so the Dr. doesn't want to give me migraine meds. So she has put me on tegretol. Took my first one today and i am hoping these work for me. I have never heard of this medication being used for CH. I am so glad to have found this site, if you have never had a cluster migraine you just cannot imagine what it feels like. Thank God I have a great husband because he hasn't slept a full night in two weeks either. I am hoping they go away soon, but you never know how long they will last.
sandra <thehoyleshome@hotmail.com>
port colborne, ontario canada

I have been dancing with the devil for 11 years now. The song always remains the same. My wife cries to figure out what she can do for me while my 3 year old son asks whats wrong with daddy.I am going through a cyclr right now. As many of us have , I have exausted my supply of Imitrex. I took 4 shots today.My life seems to go so well and then , BANG they are back. I am very happy to have found this site. It takes the pain of thinking I was alone away, and thats a start. I do and dont look forward to spending alot of time on this website,as I will here stories to both encourage and discourage me.I am now here for all of you as I found you have been for me all along. Jimmy in NY
Jimmy <milkmogul@hvc.rr.com>
Newburgh, ny USA

I've been using vinegar and water(50/50).Heat on stove (low-med)breath fumes.Usually get back to bed 10-20 minutes.Usually keeps the beast from progressing beyond K6-7
Art <artdeschamps@yahoo.com>
Worcester, MA USA

I am a fairly typical cluster sufferer, and thank G-d I went to a neurologist who is familiar with these monsters. She prescribed Verapamil (80 mg pills) and in the two weeks I have been taking them I have had only around 10 headaches instead of over 42 headaches I would have suffered from. Only around 5 of these were bad ones, and only two woke me from sleep. I still cursed G-d the last few times, and yesterday I did a 3 Km race and had a bad headache around a half hour after the race. I had figured that the cluster period was over and I could do some aerobic activity, but this monster came back to say that he was in control. I would love to organize a support group for fellow cluster sufferers here in Israel. I hope that all of you and I can be cured indefinitely from these monsters. Bye, David
David Nachenberg <rapdaddyd@yahoo.com>
Modi'in, Israel

I went for surgery four years ago to try and stop this demon. So far not good I suffer with at least two to three episodes a day missing alot of work because of this nobody realy understands not even the wife. But she tries we have been living with it for the past 13 years. God only gives us a cross that we can carry so I will. thanks for being around who knows what the future holds. PEACE!!!
mike g <mykgon76@hotmaul.co>
toroonto, ont Canada

I have been reading the entries in here and my heart goes out to all of "us" I am starting to collect emails from this site as I feel we need some sort of support group for one another. If I contact you and you wish not to be contacted please just let me know. A question I have: Aside from this site just being a place to list our personal situations with cluster headaches has anyone gone through and measured all the commonalities from these entries? Would it be worth having a headache specialist monitor the entries in here and measure what works for the majority of the entries? I know there is the bar graph, but I am not convinced that is accurate. I would be more than willing to help out in any way I can with this website and collecting data. Please feel free to email me and if you do please put in the subject line it is a clusterheadache email, otherwise if I don't recognize your name I won't open the email. I experienced a KIP 9 last night it lasted off and on from 11:00 pm to 8a.m. this morning. My doctor sent me to the hospital only for the emergency doctor to ask me what "I wanted him to do for me" and was given yet another prescription this time for a narcotic - pms- hydromorphone 2mg every 4 hrs as needed. I did a utube search on cluster headaches and couldn't believe what I found, you might like to check it out. I am open to any suggestions anyone might have.
Susan Jeffrey <suziej62@hotmail.com>
Grand Bend , ON Canada

Hi everyone. I have been a suffering from Clusters since I was 9 years old. I am now 41. In my teen years, it started out slowly. very six months I would get them. Usally a couple of times a night.When i was in my twenties it was the worst. It happened 4 to 5 times every night for a month or two every three or four months apart. In my thirties it was less frequent for the times in between. Maybe every six to nine months apart. They were still coming at three or four times a night. They were not as intense as they used to be, but still I wanted to smash my own head. Now I am in my fourties and had my first bout in 17 months. This one lasted about 4 weeks. They are getting less intense and usally end up being a hard throbbing. This bout happened at least four times a night. I have not taking any thing for them for the last three episodes. I want them to cure naturally. Maybe that is worse, I don't know. But ever since I stopped taking the medicines I feel i can handle them better. I always tell myself, if banging my head on a wall could stop these, I would have giant flat spot on my head.
Wes <wesm1993@hotmail.com>
Leamington, On Canada

Hello fellow CL sufferers. I too am a victim of the devil it self Cluster Headaches. I have suffered from them for 6 years now. I have been to the extreme of the Kipp scale and have on several occassions since that episode wish I wouldn't have been saved. Yes I committed suicide because of these terrible headaches. These headaches have cost me my relationship - he finally left back in April of '08. I have tried all the drugs, nothing seems to work for me. Something that did work for a while was smoking "pot" before going to bed at night. I have a note from my family doctor and a neurologist stating why I use pot. I have gone from suffering up to 3 per night to now suffering up to 7 or 8 per night, so I get no rest through out the night. I am 46 yrs of age and after suffering a bought of these feel like I am 90. I have tried acupuncture, what this did was moved the headache from one side of my face (the left) to the right side. I have tried the water trick, stopped consuming alcohol, but have not given up smoking. I too as many have stated in this guest book start with the pain on my temple, have the hot poker effect in the back of my eye, tearing and almost like a bells palsy effect on the left side of my face, it then goes into my ear and down my neck. Always followed by a sinus let down. I live on my own now and don't have anyone to help me through these terrible sessions. I can only hope they don't ever take me to the point I was at in 2003.
Susan Jeffrey <suziej62@hotmail.com>
Grand Bend, ON Canada

I have suffered on and off from cluster headaches starting at an early age. At that time, I was fortunate that my cycle was a few a days at the most and would disappear for months. But just this September 2008, I began with one of the most severe attacks I have ever experienced. I have been suffering everyday since then with cycles of at least 3 times a day. I tried MaxAlt and it only worked one time. I am seriously at the end of my patience with this daily chronic pain. I am so uncomfortable and dysphoric everyday and don't know how to cope with living with this daily medical problem!!!!!
Timothy <timothy.sterling@live.com>
Santa Cruz, CA USA

I am soooo glad to have found this site. I am 24, and have been suffering from chronic clusters for 5 years. I am terrified that I am going to have them forever and nobody will ever be able to help me. I have a beautiful family and a beautiful life, but I have this feeling in my gut that these headaches are keeping me from seeing the world's true beauty that I so desperately want to find. I am thankful for everyone who uses and has used this site, it is a great relief to know that you are all here. Best wishes to everyone, and blessings to you all. Love will carry us through.
Brian <brian.dyer001@umb.edu>
Lexington, MA USA

Hi all. I'm Chris and I've been suffering from CH's fo 20 years as of this year. With any luck this will be my last as I 'm moving out of the age group. Over the years I have tried absolutely everything and occasionally something will work but it never seems to last so I don't actually ever know if it did or didn't. When the worst ones happen nothing short of morphine or a bullet seem to work, obviously I've never tried the bullet by I often think if I owned a gun I just might. I have a lot more to say but I think I'm just going to go and have a little cry right now before the next one starts. Thanks for listening.
Christopher <mrcsf2003@yahoo.ca>
Ottawa, ON Canada

Hi, It is 3am and I am researching cluster headaches for my boyfriend. He is 25 and has suffered with this horrendous and overlooked condition for abouT 3 years now, it took him a while to get a referral and a diagnosis but still he has been given no support what so ever by our health service and has recieved no medication to help, he even recieved a letter which was ment to be sent to the doctor to say that he had missed one f***ing appointment that he wasn't even informed he had and the neurologist was writing to the GP to say she refuses to see this patient from now on. HOW DARE THEY refuse to see someone with such a terrible and unbearable condition, and i know full well and im sure anyone reading this will that if a CH sufferer had an appointment they wouldn't miss it for the world. I am not a CH sufferer and there is no way i would ever be able to understand what your all going through but I certainly can try and I just can't believe that Professionals from the Health Services don't seem to take this condition seriously. My Boyfriend feels hopeless and it really gets him down because like i have read in the entries on this site no body understands, when we explain to family or friends they jus keep callin it a headache and it really annoys us because they dont see the pain he is in, the worst one is when friends etc say 'I GET THEM' AAAAAAAAAAAAGH NO U DONT BECAUSE YOU WOULD KNOW ABOUT IT IF YOU DID. My boyfriend is now facing redudancy and is extremely worried other employers won't be as understanding about Cluster Headaches and not give him a job, and I have researched Disability allowance for Clusters and it seems that the governent dont give a sh** either, has anyone got any advice that i could research and pass onto my boyfriend please????? I just wish I could turn myself into a neurologist, a gp, a researcher, or just someone with the authority to help. This site wasn't even mentioned at my boyfriends referall with the neurologist and out of all the websites we have looked at this is definately the best and im glad i have found it and i cant wait to see my boyfriend tomorrow to tell him there is hope for him, there is drugs out there and most importantly he isn't alone. What worries me the most is the other word for Cluster Headaches 'SUICIDE HEADACHES', because i can never begin to imagine the pain CH sufferers experience, I wander how intense the pain would have to get before a CH sufferer seriously considers suicide and i just hope for my boyfriends sake and everybody who is on this site that the medical profession take a more serious approach to cluster headaches and a cure will be discovered.
Jodie
Bimingham, ENGLAND

hey friends.... yes i suffer from this crap to ....since i was 17 years old , now im 26 , just wanted to let u know that i pray for u guys who suffer from this ...and maybe one day there will be a cure that can help us all.... respect and love
robbyson <superrobby1@hotmail.com>
groningen, gr netherlands

Hello, I am an 18 yr old guy from San Diego. I've had these horrible headaches for the past 1 1/2 years. In the last 2 or 3 months it has happened every day usually around the same time between 9am-11am I have taken over the counter migraine medicine and it seems to work once in a blue moon.It starts off like this, First my forehead hurts then my right eye shuts and become extremely sensitive to light. afterward the pain starts at my Temple and spreads to half the right half of my head and neck. The next things that happen are 1. my right nostril become running and my right eye lets out tears. I've always been able to deal with what ever this is. The horrible pain usually last about 30 minutes and then an extra 2 hours of sensitive/small pain of feeling like I was punched a million times in the head. like I said though in the last few months its been non stop every day so I finally made an appointment today to see my Doctor I will be going in about 3 hours and I am kinda nervous I've been looking for answers all over the internet and I haven't had a clear one. Do you think I have cluster headache?... I guess I'll just have to wait and see.
Jamie <face1904@yahoo.com>
San Diego, CA USA

hello fellow clusterheads thank god for places like this because im a ch suffer of about 20 years and i get to thinking im the only poor bastard in the world who gets these headaches which im currently having a episodic period and i think of all ive missed in live love happiness and the feeling sorry for myself, then i read an entry of a little girl on this site whos parents just found out she is a suffer of ch"s and the ones who are chronic then it puts me to my knee and ill cry for a hour or so just thinking of them and the pain they must endure my heart really goes out to you people and thank you all who write to this site because its nice to know that thier are people who trulry understand my love always mark
mark parker <komacraneop@yahoo.com>
north kansas city, mo USA

Have had chronic cluster headaches for 4yrs. Been to Mayo & Diamond headache clinic etc, all meds have been utlized w/no success. After exhausting all legal medical options in the US, I am seeking treatment outside the US. I would appreciate contact information conecting me w/individuals in the Carribean who offer the shroom tea. Prefer USVI, and the DR. Plan to travel early Jan '09 so contact and arrangements can be made. I appreciate your knowledge and information.
Terry <ter_ols@msn.com>
Brookfield, WI USA

My neurologist was so happy ( his diagonsis was right) when I came in a few weeks ago, he had a feeling this was clusters but having only seen me a few times prior, he was skeptical. When I came in after they had started again he was convinced that his diagnosis was correct "Episodic" and now he after dealing with me knows much more about them, he found this site and referred me to it. I'll be around for a while now.
R. Morgan <ryan.d.morgan@us.army.mil>
Killeen , TX USA

Fellow sufferers, I have the answer : 6 years out of 8 I have lived thru this hell of CH / Paroxsymal Headache syndrome. See your GP for referral to Neuralogist. Brain Scan - Normal ; Prednisone @ 25mg tabs 2times per day for the 1st week; 2nd week 1 x 25mg morning then 1/2 tab at night. Should have taken four weeks steroids - I stopped taking them after the 2nd week. Four days on meds - problem gone! Headache free since 15th July 08. No guarantees that they wont be back next season - the neurologist gave a rpt script just in case. Neurologist suspects blood flow to brain is too fast. My coping mechanism - 2 x 1kg frozen peas; 1 for forehead the other for the back of head! Try not to thrash about - be still. Think of steak as it thaws, blood runs; frozen steak, blood coagulated. Also suffer Graves Disease - complete with Goiter [now removed]. For interest CH commenced simulaneaously with Graves. Good Luck - hope that I may have helped someone out there - because someone helped me!
Dawnne <dawnne60@hotmail.com>
Brisbane, Qld Australia

Can cluster headaches be caused from long term exposer to ammonia vapors? And not show up for years after the exposer?
RPearsall <RPearsall@cablespeed.com>
USA

when i found this site i was in the middle of a cluster f*** and cried. This site is going to be my new home. To find out that there are others with this headache and that IT even has a NAME. What and answer to my prayers.
Patty roth <pattyroth13@yahoo.com>
Hayden, id USA

I remember the first day of my CH. I was sitting at my computer and heard a "Buzzing" noise. It was so real sounding that I began to search for the cause. My wife thought I was crazy, little did we know the horror that was to come. My CH began on April the 28th, and lasted until the end of June. My family doctor tried to treat it with Nubane injections, but they only were a bandaid to the problem. After the second week, I was sent to a neurologist, who promptly diagnosed me with cluster headaches. It was miserable, and death seemed preferable. I have since had several "mini bouts", which lasted a day or two. I am glad to have found a site with people that can relate, and where I can learn more about clusters. Jason Wical
Jason Wical <jasonewical@yahoo.com>
Hewitt, Tx USA

I will NEVER forget the day. I had just finished my first year of nurses school and had my final evaluation with a professor (it went well if I do say so myself). I decided to go home and treat myself with a much needed nap. Well I awoke with an odd feeling on the left side of my brain. I have had migraines before but this was different. I tried to get back to sleep but about 5 minutes later I was on the floor gripping the carpet and drooling in agony. I thought I was going to die and I was in too much pain to let go and reach for the phone. Around thirty minutes of this (which felt like an eternity) and then it was gone as quickly as it came. I was so confused and I chalked it up to a fluke. I then spent the next two months sleep deprived and on the couch doing anything I could to prevent myself from having this feeling. At one point I even thought of banging my head on the wall to try and knock myself out. The worst is when I finally got into see a neurologist after being on a wait list for over eight weeks and by then they hell was over. I was in remission for over two years and now last week was awakened by that same terrifying familiar feeling and its been 1-2 times a day (I work nights) since. And, again I am on a wait list until December at the same hospital I am now a charge nurse for! Ain't life grande! Prayers are much appreciated during this time Erin 26 years old
Erin <EChristopher24@hotmail.com>
NY USA

I've been a suffer for 19 years, I'm only 31. All doctors think I'm a "junkie", or want a "fix". They don't, can't, and never will understand what we go through. They don't get it. I don't want to take morphine every day of my life. I want to be normal like all my friends. I don't know a single person that suffers like I do, and I know alot of people. My biggest fear is that my beautiful son will have to grow up with these fucking painful headaches.
Chris Cohen <crscohen@gmail.com>
Norfolk, VA USA

Wow,just walked in from ER where my nine year old son was diagnosed with cluster headaches. Boy am I glad I found this site as horrible as I feel after reading what i now know he was going through for five continuous days. I feel a sense of relief to hear others stories. I wonder though I didn't read of any cases in children is there anyone out there with children suffering from this and if so how can I help him??? what works for you at 3am when your child is in unbareable pain?? please any suggestions are welcome. this website is a great thing and I'm relieved to have found it so soon.
CAROLYNA CASTANEDA <CAROLYNAC81@YAHOO.COM>
MONTGOMERY, IL USA

Well..I've been here before. Started having CH about 4 years ago. I was on an every other year cycle (or so I thought) with my episodes coming around April and ending around August. For some reason my cycle came about a year early as I've been dealing with them for the last 3 weeks. They've been different this time as oxygen has helped before but doesn't seem to be doing anything this time around. Neuro has me on Depakote as a preventative and Zomig to help as a last resort if the oxygen doesn't work. I'm concerned that now that the cycle is off the regular pattern that I'm turning chronic or that even if I'm episodic, I don't know when they'll go away. They've been more painful this time around and are hitting me earlier...around 9pm whereas before it was in the wee hours of the morning. Hoping they'll end soon.
Chris <clhockey@twcny.rr.com>
Fulton, NY USA

The best neurological medical care for our newly diagnosed daughter is what we are prayerfully seeking.
Carolynne's Mom <mevsm1@gmail.com>
Spring Hill, Fl USA

I am 55 and suffered regular bouts of Cluster headache all my life. I called them eye aches and took analgesics until a Neuro surgeon explained it all and eventually put me on to the drug Imagran. However without doing anything my headaches disappeared 6 years ago. What I need to know is will they come back and has anyone else had a similar experience.
John Lennon <john_lennon@optusnet.com.au>
Melbourne, vic Australia

Well, they're back It's been a year and a half since my last.I have read some stories and I couldn't describe the pain any better.I have never been on a site just do the imitrex shimmy during my cycle.I have found that splitting the shot in half also splits my cost as well since i am self employed with no insurance.I have suffered for about 12 years with these demons, 5 without treatment.You would think I would be insane by now.God bless the sufferers, and let there be compassion for those with treatments,PASS IT ON.Wess
wess pinkelton <dwpink71@gmail.com>
charlotte, nc USA

Comment and Question. First "attack" yesterday. Sounded classic - sudden, excruciating, eye, sticking, one sided, BUT It lasted 8 hours with narcotics, steroids. Went in with severe nausea, some vomiting, feeling of passing out (though didn't). I will say the pain was significantly decreased after a while (and would not have sent me to the hospital - driven, couldn't even it up in car) but I was still nauseous and vomiting. My own non-medical thought was the n&;v was from the narcotics because that's how I reacted many, many years ago after surgery. Now I am dreading the next "attack".
Martha Healy <mwhealy31@hotmail.co>
Hartford, Ct USA

Reading all the entries has been a wonderful boost for me. Knowing that people have been suffering for years and NOT killing themselves is what is currently saving me. I am a 63 year-old woman and started having clusters about 6 years ago, with the diagnosis confirmed about 4 years ago. I've been on verapamil 360mg daily since diagnosis, and get about 2 episodes or 4-5 weeks per year (although I did have a 2-year period of remission). They came back when I started tapering the verapamil, thinking that the headaches were past (I don't fit the "normal" references for CH, not being a male between 20 & 50 years old). Imitrex works most of the time, although the side effects can be pretty bad, especially the injectable kind. I haven't run out of insurance yet, but it seems from other posts that I may do so with this episode, since I'm getting CHs nightly and I'm going through meds like they're going out of style. This episode is the worst yet, and the agony/torture I go through before Imitrex takes effect is definitely the worst pain I've ever been through. I'd be interested in hearing from any other older women who have started having CHs late in life. What keeps you going? My kids are grown and settled in their lives, I won't be able to retire anytime soon, with all my pension funds drying up with this financial crisis - what's the point of trying to "soldier on"? Any advice would be welcome!
Barbara <bebo.bates@gmail.com>
San Francisco, CA USA

My husband has been a cluster sufferer since we've been together (around 25 years). We're in what should be the peak of a particularly bad episode with no signs of letting up. Usually managed well by Maxalt MLT, my husband has been taking up to 3 or 4 pills a day and I'm terrified that he's going to stroke. Usually managed his pain before it exceeded 7 or 8 on 10 scale and recently he's been having 15's!!! Health insurance will not cover oxygen for clusters. It's helped in the past. He can't seem to stop smoking and everytime I see him smoke a cigarette, I see red. I find myself getting angry when he gets a cluster because he's not avoiding the classic triggers (smoking, chocolate, etc.) I am in a very vulnerable place right now. I'm dealing with serious physical problems myself and am trying to come to terms with the recent loss of my sister. Any support would be appreciated.
Lisa <lpotash13@aol.com>
Miami, FL USA

just started went to doctor yesterday told me to keep taking my ibuprofen thats all well and good but the more i look into this the more unhappy Im getting. to think i will have to go through this for the next weeks or months is not a good picture after all its now a quality of life thing i really dont know what to do maybe someone can tell me how to live with this
richard gerber <rfg999@gmail.com>
lincolin city, OR USA

a few hours each day out of reality and into the medievel torture zone.why me we chant?
dave mcclure <hedgy@eircom.net>
dublin, ireland

I have been a CH sufferer for 30 yrs,the longest remission was for 4 yrs but then they came back to the typical(for me)2 or 3 times a year for 1-3 months at a time.I have found the best preventive measures during attacks is Prednisone,60 mgs daily until they subside,at onset of a headache I put on 100% oxygen and take a Zomig nasal spray.This gives me relief in 10-15 minutes.I also take Verapamil year round to help prevent them,increasing the dose as a cycle sets in.Hopefully this regimen will help some people cope,and hopefully some day they will quit controlling my life when they set in,the pain is unbearable like an ice pick in my left temple area.
Terry Poff
Waxahachie, Tx USA

Hi Mates! I am a sexagenarian who suffered with period cluster headaches until about 12 years ago when my physician prescribed me a diminishing dose of Prednisone which had been recommended on this site. I have never had a bad one since then and when I did, the only one some 11 years later, it was related to a sinus infection and was very mild by comparison. I am posting today because of a newsletter entry from Mike Adams at Natural News, what I regard as an excellent sourse, who describes LSD as a miracle cure for cluster headaches. The headline amused me thoroughly. LSD was my favorite drug in my twenties. Probably still is, I just never have a whole day to trip anymore. Great stuff that actually can raise your consciousness. That's why the government is so afraid of it. God help them if American start to think again. Just don't take too much. Anyway, here's the link to the Natural News article. http://www.naturalnews.com/News_000365_headaches_cluster_headaches_hallucinogenic_drugs.html I'd have done it in a heartbeat, had I known. Nothing is worse than a cluster! Just try to research a comfortable dose. It's one of the most concentrated drugs know to man. That's why they use blotter paper with just a drop on it. That paper with one drop is often cut into quarters to keep the dose minimal. Have a great, headache free trip!
Jeffrey Irving <jmirving@connectnc.net>
Pinehurst, NC USA

After suffering from Cluster headaches for 17 years i cannot believe i never knew this site existed! Some very useful info, some i knew and some new. I don't feel quite so alone now and take some comfort that there are people going through the same pain!
Les Hales <les.j.hales@gsk.com>
Maidstone, Kent, England

Hola:( ...sorry for my bad english) Im ivonne. I have been suffered for "headache" since 12 years old, always seasonal, from time to time and years to years. Until today I belived I have some kind of migraine (but I Did'nt fit in the description) now thanks to you I going to find out if Im a cluster headache sufferer. Im in a crissis right now (2 weeks so far) so when I read the narrations of others I just beging to cry, that was just like me. I have a family of six kids and a lovely husband and I feel so guilty when Im in crisis because I feel very weak. Im ussualy very active and strong person, now Im nothing but pain and fear. I dont know whats going to happend this Nigth...well I know, but at least this time I think I will have some hope. I called my husband and he will make me an appointment with a neurologist. What I have to expect, does he will understand me? I have been missdiagnose for so many many years, I always end the crisis by myself without hope, just suffering, feeling guilty and weak. Thank you for letting me express my feelings. Sugestions and new ideas are very well received. Thank you, Ivonne Againg, sorry for my bad english. But I can read it very well.
ivonne ramirez <rivonne07@gmail.com>
Aguas Buenas, PR USA

Have hope! I had cluster headaches for almost almost 35 years (approx. 1960 in high school through 1995). Initially, they were infrequent (perhaps one per month) and nobody know what they were. As they became more frequent and intense (after viet nam and when I was in college) I found a doctor (a GP) in kalamazoo where I was attending Western Michigan University who did know what they were. Mine were exclusively in my left temporal artery. One doctor thougt it was "temporal arteritis" which can lead to blindness but this doctor told me I had cluster headaches. He injected my left temporal artery with a cortisone (Kennalog - sp? I think). The injection hurt like hell but at the time I would have taken one shot an hour to relieve the pain. This treatment worked for a few years but over time did not produce the relief. This doctor finally told me there was nothing more he could do but (after putting my head through a door in the house) got me into Mayo Clinic. After 10 days of testing they told me "You have cluster headaches"????? Wow - 10 days for what I already knew! They offered oxygen at the time of onset and also taught me to inject myself (IM) with Cafregot - sp?) By now my headaches would hit me every day (sometimes 2 or 3 times per day) for a period of 3 to 4 months. Then, nothing for 18 months. Then every day for 3 to 4 momths - then nothing for 18 months. This was MY CLUSTER. I also was a regular patient of the Diamond Headache Clinic in Chicago. That clinic did more for me than anyone. They also told me that most likely they would just "go away" for no known reason in my 40's or 50's. They did and I haave been headache free for more than 10 years. The message here is "hang in there". There is hope. I am also confident that there are drugs out there now that were not available when I was suffering. I DO know your pain. At first I was afraid I would die - later I was afraid I would not! What worked best for me back then: (my spelling may be in error here) Cafergot Suppositories at onset. These worked better than the injections. Problem: Must be taken at the first sign of onset or they are no good. Take too many (as I did) and they will actually bring on the headache (on the rebound). Cocaine nosedrops did help reduce the terrible pain. This was the last medication I took before they completely subsided. I was given an Rx for these when I got out of the hospital for taking too many cafergot suppositories! When I was "in the cluster" I held to the diet as I'm sure all of you are - no alcohol, chocolate, cheese, soy souce, etc. Once the cluster subsided (after several months) I could eat or drink anything with absolutely no headaches. Over the years I took more Rx drugs than you can imagine but the above 2 were the latest and most effective. I surely hope there are more effective drugs out there now for all of you. Jim
Jim <undrpar5277@yahoo.com>
Stevensville, MI USA

I am not a sufferer either, but the wife of a chronic sufferer. Over 8 years now. Botox worked for about a year, but they are back and worse than ever. When will they go away:?
Carolyn <cgcothran1@yahoo.com>
Dallas, TX USA

hi all been a cluster headach victim for 37 yrs had to deal with them my whole life im 58 male cant imagine having them when im in my 70s in a convelesent home were a nurse or aid dont no how to deal with them or in a two bed room with lights on at 3 am oh my god what i got to look forward to god bless you all
dodo
wallyworld, ct USA

I have had cluster headaches since I was a little girl and as I write this I am in the middle of one of my normal attacks. I hate these headaches!!!!!
Mary D. <princesstudor@ymail.com>
Alta Loma, Ca USA

Hi Fellow sufferers and supporters. Thanks for this site which I have just discovered. Reading comments by other sufferers has helped to restore my belief in my own sanity. I have been suicidal in the last 2 weeks, believing I would never get past this attack. I was hopsitalised for intraveous medication which did break the cycle, leading to less intense CHs. I was introduced to oxygen and am now scared to move away from home in case I need it. I have suffered for 14 years but have been misdiagnosed often, as my symptoms are atypical and apparently fewerfemales suffer from this disease and have different symptoms to males, according to my neurologist. I have spent the past 2 days just reading and absorbing information from this site. Thank you for offering such a comprehensive insight. It is good to know that others understand what one is going through. And although I wish no-one (myself included) would ever have to go through this pain, it is comforting to know someone out there can understand. Wishing you all PFDs forever.
judy <nurek@icon.co.za>
Cape Town, South Africa

Thanks to all responsible for this great site! I have had CH for 2-3 yrs, and was really just diagnosed about 3 months ago. The same neurologist who helped me figure this hell out ordered, among other tests, an MRI, which initially showed him a micro-adenoma (tumor) on my pituitary gland. At the time, he said the CH and the tumor were unrelated, and ordered a pituitary-specific MRI. So, in the span of 15 days, I had three MRI's (pretty sure that's really good for you), and following all that, he now says the initial diagnosis of the tumor was incorrect, just an anomaly on the film. I am in the process of obtaining a second opinion for that, to be as sure as possible. I'm wondering if anyone on here has experienced that little wonderful piece of what I've been through. Also, for the CH this guy has started w/ a Predisone form (very effective, though not something you want to take forever), along with Duradrin and Depakote. I stopped the Depakote because I did not enjoy the side effects, i.e. tired all the time, interrupted sleep, etc. The Duradrin (super-Tylenol, basically) is effective maybe half the time. He now has written a prescription for Lithium, which I will probably fill this weekend, but am not particularly thrilled about taking. I have a few Zomig one-shot inhalers and a few dissolvable tablets, and this drug has BY FAR been the most effective, both in terms of how quickly it works, and how well. However, I have the absolute devil of a time getting more than six inhalers at a time if I try to refill in less than thirty days. I work for Verizon and have an excellent health-care package, but the prescription plan company (Medco) says that Verizon says the drug's too expensive and so doesn't like paying for it!!!!!!!!!! I wish they could experience this nightly agony so they might then change their tune! Any similar experience or insight would of course be very much appreciated! Thanks again! Richard H. Winchester, VA
Richard Hampton <rahhar415@verizon.net>
Winchester, VA USA

Good day to all.. heard about this site from my neurologist. it's great to finally found bunch of people who understands CH. It has been 1 year & 6 months of pain free days for me, to be honest with you guys even hearing the word Cluster Headache makes me tremble in fear.
Zul Samad <zulsamad911@gmail.com>
Ampang, Kuala Lumpur Malaysia

I am not a sufferer, but a grandmother of a beautiful, wonderful, smart 5 year old that has just been diagnosed with cluster headaches. It took many, many visits and extremely long nights and days with drs and neurologists to diagnose the monster. It started last summer at the beach and was in a short remission during the late winter/spring, but came back gangbusters this summer. We are beginning to track the episodes and trying to figure out triggers - be the realization is that may not be possible. She is on her way to the Mayo Clinic in hopes that we can find more relief. Her 'episodes' occur most nights recently and her mom and dad are exhausted, as you all can well imagine. I would do anything to take this pain away from her, she can't even start kindergarten yet. The school has been fabulous and the teacher is so caring and patient. But, how do you explain to people the pain when all they see is a lovely little girl with adult sunglasses on all times, inside and outside, because there are NO glasses to be found that cover her eyes completely. If anyone knows where we can find better sunglasses - that would be a help. My grand-daughter knows all her medicines by heart and most recently began oxygen treatments which have been a lifesaver thus far. I would like to hear from other families whose lovely children are suffering from CH. Thanks for allowing me to get this off my chest.
Virginia <wmccombs@vnet.net>
Kannapolis, NC USA

I am mid cycle of the cluster head aches- These are the worst in my life. I have had these since I was 19 years old. I don't understand them. These realy realy s____. I a releaved that i am not the only suffer, I wish all of you a fast fast head aches 9if we need to have them)
Leslie
Braintree, MA USA

I was diagnosed with CH some two years ago, after thankfully only a short period of misdiagnosis of sinus and other usual suspects. My doctor quickly understood the typical symptoms and put me on Ergotamine + Caffeine tablets which of course only ever started to kick in when the attack was coming to an end. Typical attack patterns of 30-45 min, 3-4 times a day for 6 weeks. Just finishing off my third cycle after 8 weeks. Although my second hot period has lasted longer I have learned through trial and error that, since the timings of my attacks are relatively consistent, I can take one Zomig tablet approx. 1 hour prior to the assumed next attack and in this way completely forego it. Managing the timings has allowed me to go for days without an attack (providing I didnt miss a bit that is). What complicates the process for me is the fact that I travel approx. 15-20 days per month and more importantly that I travel around the world and therefore have to deal with multiple timezones and jetlag. Since the biological clock and hypothalamus are directly linked to CH and since flying is a definite trigger for an attack I am still getting caught out on the timings occasionally. Notwithstanding, I am certain that for people who do not travel frequently and who feel that their attacks have consistent patterns, taking a Zomig (Zolmitriptan) an hour prior to the next "show" could work equally well and get them through days without pain. In essence, I believe that a "take one every 8 hours" approach can possibly allow for weeks of no pain. I am combining this treatment with a low histamine diet during hot periods and not only stay away from the famously known triggers alcohol, chocolate, tomatoes and others, but try to stay away completely from preserved and processed foods as well as sugar in any form. Regrettably the list of dont's is rather long and therefore it is not always easy to get a well balanced intake throughout the hot period (with the positive side effect being loss of weight!). I add lots of water to my daily intake and am adding magnesium and minerals to my fluid intake. I have recently been to see a neurologist in Germany who specialises in CH and have been told that a new therapy has shown promising results. A cortisone-steroid treatment is administered for two weeks at the start of the new cycle (I understand that 2 weeks are a manageable and relatively risk free duration for a cortisone treatment) and that, simultaneously, Vermapil is prescribed as prophylaxis. During the cortisone treatment, attacks can and should be reduced to zero. Thereafter, the Vermapil, which will have been taken for two weeks by then will have reached it potency to sustain the pain free periods after the cortisone treatment ends. It sounds promising and I will try next time. I hope that any of the above may help at least one of you. And even if it helps to cancel out only one single attack, its probably been worth the while.
Markus Engel <maengel@mac.com>
Shanghai, China

Hello-My name is Trish. I have been getting cluster headaches for 10+ years. I am allergic to Imitrex and Topamax. I have had Gamma-knife surgery twice and was headache free for a few years. The headaches came back 2 months ago and I feel like I don't know what else to do. I am a divorced mother of 3 teenage girls who are my reason for living. I am a very healthy 47 yr. old woman outside of these horrific headaches. For some reason I feel very embarrassed when the first "twinge" starts, but then when I am consumed by the pain I lose all ability to think rationally. I try to hide them from my girls but I know they know I'm down. O2 helps a lot but not all the time. I feel depressed and anxious a lot now because of what another day of being a clusterhead brings. I get really pissed off at the medical community and the insurance companies for not looking more seriously at this condition as it IS life threatening! (They don't call them suicide headaches for nothing) I just came across this website and I am grateful for the chance to vent to people who understand what pure evil is. This is the first time I have posted anything on line as I am a computer and technology idiot! If anyone has anything to share I would be happy to hear from you. Thanks-
Patricia King <comerking@live.com>
Bethel, Ct USA

I've had clusters for 5 years now. I'm just starting my third cycle period, and am so blessed to have found this place. Thanks for all of the info, it really is very helpful.
Nathan <natelighty@aol.com>
Westminster, MD USA

I have been a CH sufferer for over 30 years. I am episodic. I am here today because the beast is back. My personal cocktail is imitrex nasal spray, midrin, and norgesic. I was prescribed just this week, treximet, which, seems to help. As I've gotten older, the misery seems less intense, but,still hell. I will start on oxygen therapy tomorrow.The pain has been intense now for about 2 weeks. Usually, lasts 3 to 4 weeks.It will be great to be linked to other CH suffers. The pain makes me clutch my head, scream, cry, wimper, bargain with God, question where He is,pace, out-of-control search for relief, and embarassed that I cannot handle it. In the past, no one understood, now,doctors, family members, co-workers, and friends empathize more. There are now great web-sites concerning CH. My doctor is now a believer, he actually trys to work with me regarding this. When I called him yesterday while in the throes of one, he asked me to come to his office for oxygen treatment. He even prescribed the new med, treximet. He now believes that 2 aspirin and a quiet room is a joke. See, there is hope for us all. Please let me know your offensive when the beast is beating you down. Thanks for any help you can give me. Thank you.
donald e. bradley <dyeldarb@aol.com>
Piedmont, sc USA

Great Site, thanks to all who support it!. I'm the wife of a Ch sufferer. He's had it for about 17 years, age 58. The last 7 weeks have been hell. He's is so much parin. Just saw another neurologist in Ottawa, who changed his med - Lithium and Zomig. Will ask our family doctor for the Oxygen theray when we go tomorrow, but he doesn't know anything about clusters. Has anyone been successful is getting a CPP disability for clusters? We would be very intersted to know
Els
Cornwall, On Canada

Have had cluster headaches every three years. Last 4-6 weeks. Started Clusters this time in two years from last. Dec. 97, Dec. 2000, April 03, Aug. 06 and now Aug. 08. The BEAST would get me at 7pm to about 10pm, once a day. Now I get some in the afternoon that last only about 1 hour. Then I still get one in the evening aroud 8pm. Some medication that I have taken in the past only seemed to make the Cluster worse. Oxygen is the only thing that seems to help. This may be only in my mind...... At times when they get worse, all you can do is pase.... I started using oxygen in 2000 after reading on your side. clusterheadaches.com Thank you, Ken Barley
Ken Barley <ken@barleyauto.com>
Ste. Genevieve, MO USA

I started having tortuing CH at about the age of 17. They controlled my life for 8 week periods at a time, 5 to 10 a day. I saw doctors for sinus,dental,eye,ear and everything you can imagine. I felt doctors thought I was just a freak looking for drugs or something. I felt no one else on the face of this earth could ever imagine the immense pain I suffered. Most of the time I was awakened by this horrible pain, rolling, pacing, vomiting, crying, squeezing, begging, praying pleeding for hours on end. I have gone as long as 7 years without one, then bam, out of the blue they were back. I have had every test run on me imaginable. I have been to pain clinics, neroulogist, and specialist. Medications, tried, them all...the only thing that ever gave me ANY relief was OXYGEN... sometimes within 2 minutes of being on oxygen the pain was gone..Not to say it didn't come back several times that night, but knowing I had that large oxygen tank on the side of my bed was reasurring. Now there were other times where the oxygen didn't get rid of them completely, but took some of the severity of the pain away. It has now been about 8 years since my last experience and I can only pray they are gone forever; but I will never let my guard down. To everyone who suffers with this HORRIBLE pain. I UNDERSTAND YOU, even when you think no one else might. People who won't believe or understand you are ignorant to such pain. Don't ever let this win you over. If you ever need someone to talk or listen, send me an email. Good luck to everyone who sufers from CH.
Martha
thibodaux, la USA

27 years of experience in agony
christopher <adhille062@aol.com>
staten island, ny USA

Hello and welcome. Dont suffer needlessly. The best thing I ever did for my clusterheadache was join this site and become more educated about my condition. Information and support is just a few clicks away. Come on in the waters fine. all the best thebb
thebb <thebbz@msn.com>
lewistown, Mt USA

Great website,normally check sites whilst in cluster period,but 6 months late for this one,more intense this time round eg;4-5 CHs per day,some are lasting 3-7 hrs take Imigran(Imitrex) but sometimes they dont work so hospital treatment is needed.
Barry O'Brien <red_baz2@bigpond.com>
Melbourne, Victoria Australia

Good Morning All Discovered this site as I was surfing to find out what these awful pains in my head were. Have a family history of aneuysm and tumors but ct scan, sinus xray and blood work are normal. I seem to exhibit EVERY classic symptom of CH though. I don't bother taking anything as it doesn't come close to helping. I just grab the icepak and brace myself. Of course the icepak doesn't help either but I feel like I have to do something.I'm intrigued by the use of o2 but wondered if anyone has experience with anticonvulsants? Have a good day all, fight the good fight! Patricia
Patricia Walsh <PWPTBO@msn.com>
Peterborough, on Canada

Hello All! My name is Jarrett. I am 28 y/o and have been suffering Cluster h/a since I was 15 y/o. They are a monster! I have had episodic and went a year of chronic. I also use imitrex and stadol regularly. It is nice to see others feel the exact same way. It takes a dramatic toll on everyone in your life. I need niot explain anymore, as you all know too well! My wife is super but gets down on herself since she cant help me. I feel sooo bad for her. Oh well! I am in a cycle right now! You know, I always try to convince myself it isnt happening but then BAM! I am blinded and helpless. Good Night All!
Jarrett <rocmedic2002@yahoo.com>
Reidsville, NC USA

The bizarre circus clown that haunts my every thought has come back for another round of laughs. He wields his wicked laugh, insanely mocking my forsaken pain. I beg for him to leave, but he wont. Why does God inflict his innocent creatures with such hell? Why was I chosen to bare this cross? I am doubting my sanity lately as cluster headaches have stripped my ability to interact with those who I need most in these times. Taking away the Scott that once was. Replacing him with this anti-social, numb, Scott. One who has no feelings, no regard for days or nights. No place for love. In my dreams I try to escape his wicked soul, but the laughter even finds me there. I can not escape his wrath. Only watch the way he gleams with joy from the torture he inflicts. My phone no longer rings. My will no longer lives. There has to be a way.
Scott Shep
Schuyler, NY USA

Great site. Thanks for all the sharing. 30 years of CH, migraines and CDH. Still looking for the key. Anyone know Imitrex goes generic? I understand it's supossed to be this year (2008)
Q <verydroll@wowway.com>
Worthington, oh USA

I'm an episodic sufferer, usually 3-4 weeks of attacks, one to three attacks per day, and usually about 3 years of pain-free remission in between. My first cycle was when I was 12, then 16, 19, 22, and now, 30. When I didn't get a cycle at age 25, I thought my body had kicked it for good. Not so lucky ... I am on my 26th day of this cycle, after nearly 8 years of remission. I didn't go to the doctor for them until I was 22 because I just thought my pain was the typical pain that everyone felt for headaches. I thought everyone had an ice pick in their eye when they felt a headache! I'm so glad to know a special name for what I have. Glad to find company in misery.
Rhys C <reeser@gmail.com>
San Francisco, CA USA

Hello, well done to those running this site,(thank you) Im 35 and have been suffering from CH's for 21 years. Attacks start the same time every year, every day for 6-8 weeks. The first starts at 1am then 4am then again at 7am. Every year they are more agressive, and now have resulted to morphine shots to stop the insanity. However if i can get to bench press within the first minute of the CH coming on and push weights non stop it seems to abort within 3 minutes. Also although DR's say stay away from caffine etc these do help when i feel a CH coming on. All the best of health to all.
Anthony Moularas <e31pacer@hotmail.com>
Adelaide, S.A Australia

Thank you for having this site, I now know i am not alone. I have had clusters now for 8 years now. It has been hell at first i had 1 or 2 a day, OTC meds worked. The cluster lasted 3 months as time went on OTC meds did nothing, iwent to the doctors that is when he told me i had cluster headaches. he also find i had high blood pressure and gave me meds for both,for the next two years i was pain free. then thay come back worse than before and i thought i could handle pain, Boy was i wrong. I have never felt anything like this,I have felt lucy the past few years the pain has been unbearable, but i was only 1 or 2 headaches a day and the cluster only lasted a month or two. then in june of 2006 it started clusters of 4 or more a day, waking me up every two to three hours every night, I did not want to go to sleep. I know what was coming unbelivable pain, sometime lasting 20 to 30 min sometime up to 4 or 5 hours or more. this latest cluster has lasted 6 months, With 26 days in a row now of pain up to 6 times a day, The meds i take don't work as well as thay use to. Sometimes the pain is so bad i do not want live, but i make it though some how. hopefully there will be help for us soon.
Robert Beaucaire <bobbyb0329@hotmail.com>
commerce, Ga USA

Just something to share, my husband is chronic has been for about 10 years now... was under my truck during a thunderstorm when lightning struck the ground nearby which traveled across the water soaked ground and since my husband was touching my truck he got one hell of a zap! Since that day (almost a year ago now) the headaches have been less often, oxygen works quicker with almost never a need for an injection unless he is at work and can't get his oxygen and sometimes a week goes by without a trace of one which he had never experienced. Just wondering if anyone has heard of electrical shock therapy for these CH's and if so what was the outcome. Whatever happened that day, as scary as it was for him, it has helped, tremendously. Thanks for listening. Wife of CH sufferer
Cristyn <tcxi@sbcglobal.net>
SCS, MI USA

Hello all, A question for those of you who have expereinced Horner's Syndrome as part of the symptom set: Does your eye eventually recover its normal appearance and pupil size, or does it remain affected more or less permanently?
RL
CA USA

great site be back again
john dhayer <jdhayer1@rr.com>
sherrill, ny USA

Hi to all fellow clusterheads, I have had CH since about 1989 but it was only diagnosed being CH about 5 years ago. As most of you have experienced, the pains were blamed to teeth, sinusses and all kinds of different (mis)diagnoses, plus the feeling that no one takes you serious. I am really glad that I have found this site with a lot of people that know what CH really means and what we have to deal with. I myself am a chronical case, it sometimes is gone for a few days, but I know that the beast is always there, waiting to attack me. In my case it mostly happens when I wind down from work, for example in the evening watching tv or reading a book, or especially in weekends when I'm out with my friends. Result, I don't go out anymore, or I make up excuses to stay home. Alcohol is really a trigger for me, so i don't drink it anymore. I was doing fairly ok untill a few months ago, still having the occasional attack, but nothing really exceptional, if you know what I mean. At that time I was using Verapamil and O2 for about 4 1/2 year and it was bearable. Suddenly I got the CH back that I was afraid for and it grew from bad to really really bad and worse. I got to a stage that I really thought that it won. At this time i went to see my companies doctor and he arranged for me that i could go to Belgium to visit a neurologist on a very short term. If I would have had to wait for a Dutch neurologist, it would take about 3 months just to get a first appointment. Anyway, this doctor has prescribed Topamax, which I am using now for the second week and I think that it starts to work. I have not had an attack for 3 days now, but I can still feel the beast lurking around the corner. Well, at least I'm hopefull that when the scedule that the doc gave me is completed, I will be PF for at least a while! All you Clusterheads out there, hang in there, one day they will find something to really cure us!
ad <adsteenstraten@planet.nl>
netherlands

Hi, I am also new to this site, and I am the one who suffers from these awful things. I just want some help and someone to relate to. My doctor has put me on everything from oxygen to Topomax, and the only thing that has EVER worked is Imitrex nasal, but with no insurance it costs about $200.
Moose <longfellowjc@students.witc.edu>
Star Prairie, Wi USA

Hello all my cluster friends ,,hear we go again iv been pain free for 3 weeks and came back 3 days ago ,,its building up to a big attack and its scares me ,,iv only just got rid ov them after 7 months my longest yet ,, my nurse from hospital is giving me imigran self injections iv not tried it yet as a big one asnt come yet ,,,iv just been taking the red bull but it seems to not work with me ,,and can anyone tell me about the ice thingy and wat u do with it ,,im willing to try anything b4 it gets bad ,,i hate aving it because it gives me depression and i feel that low in myself i just wanna end all the pain im getting weaker and weaker everytime the thing comes bk ...i hope u all cluster suffers are aving a pain free time and all stay safe plz mail me back and let me know about the ice thanks for listening tc love sarah
sarah <sarah_carter2006@hotmail.com>
hull, england

Good day everyone! I am 26 years old and I have been suffering with cluster headaches for 5 years now. There have been times where I've had to lock myself in the bedroom for up to 3 days with no light and no sound as all of it feels like bricks hitting me. I've had nose bleeds and blackouts ... it even gets so painful that I end up making myself sick with no sleep and am unable to eat anything for the length of time the headache lasts. I try telling people how bad it is but have lost 2 jobs because of the time off, no one seems to understand it is not a regular headache and there is rarely and sympathy. I have tried many different medications however I was just given one called Amerge which is a strong blood thinner and it has been working wonders when needed. I'm not sure of anyone else has tried this route but I would highly recommend it.
Stacey B <staceyb82@hotmail.com>
Toronto, ON Canada

I've suffered from cluster headaches since I was 19 years old. I've just had my first attack after being 2 years and 3 months pain-free. My last phase 2+ years ago lasted just short of 3 months, the longest one ever. I ended up with vials of imitrex and insulin needles so that I could measure out my own 2mg shots (after much begging), because I had so many attacks throughout the day that I needed to be able to take imitrex more often. At first I worried about rebound headaches and voided that, but after you take the maximum amount of imitrex in 24 hours, and an attack comes on, fear of rebound headache is the last thing I was worried about. So, I was lucky enough for the first time in years to visit Dr. Merle Diamond at the Diamond Headache Clinic here in Chicago, Illinois. She was so swift and confident about helping me break this phase, I left there feeling confident too. I was put on a 2 week dose of prednisone, and I was surprised that after almost 20 years of battling headaches, this was the first time anyone ever suggested prednisone to me to abort a cluster phase. After about the 5th day, I didn't need imitrex anymore, and the phase was gone ... gone away from me for a long wonderful time. Now the headaches are back again, and for the first time ever they were preceded by very new, strange symptoms that seem like auto-immune disease (rheumatoid arthritis maybe?). Every morning a differnt knuckle/set of knuckle joints is swollen and painful on both my hands and both my feet, and it spread over a few weeks to my lower back, my wrists, my ankles, my knees, and my shoulder muscle. This was the first time anything like that happened before a cluster phase. Usually, my cluster phases just kick into high gear from nowhere, and I have nothing else going on beforehand. I should mention that some research into the type of titrated down 2 week dose of prednisone that the Diamond Headache Clinic gave me is the type of dose commonly prescribed to treat a "severe allergic response". I did go to an allergist a while back and discover that I have a dramatic, severe allergy to tree pollen... and my cluster phases most commonly happen in the spring/summer seasons. Anyhow, I'm rambling and sleepy ... I just need to connect these dots somehow and share in hopes this disjointed recap of my journey might help someone else out there. For sure, I'm going to an alternative medical practice of MD's now, www.WellnessOfChicago.com, to see if they can help me figure out if there's some connection between being: 1)formerly hyperthyroid a.k.a. Grave's disease (abated after 3 year course of meds a decade ago), 2)dramatically allergic to tree pollen 3)suddenly showing symptoms of (what is it this time? Fibromyalgia? Rheumatoid arthritis? beats me) swollen, painful joints and muscles 4)back into a cluster headache phase Wouldn't it be great if it all added up to something completely logical?! I should share also that: self-injecting imitrex with an insulin needle is WAY easier and less painful than that auto-injector. There's no blood, no sharp jab. If I run out of the vials of imitrex and have to get the autoinjector, I'm just going to hack into it and continue injecting my own with single-use insulin needles. Highly recommended. I'm going to try this water treatment. Couldn't hurt. Be sure to include electrolytes though right? To avoid hypernaturia I think it's called... I have these Liquimins Concentrace Mineral Drops. I'll add a drop to each glass of water. Ok, so glad this site is here.
Michelle Boraz <mceboraz@gmail.com>
Chicago, IL USA

I am new here to the site, but am not a cluster headache suffer. My boyfriend is the one who suffers. This is all new to me. We have been together for a year and known each other for two. He was able to hide his pain from me until we moved in together. Now he cannot. I have seen the not so bad ones, and just recently saw one of the worst, which sent him to the hospital. I am in the medical profession working in nursing, and have never seen anything like this. When he hurts I hurt, I want to scream with him. I went into my profession to help people, and there is nothing worse than having to be on "stand by" and knowing that there is nothing you can do to help, but just watch and be supportive. This last episode not only brought him to his knees, but me as well from frustration. We have six children between the two of us ranging from 11years to 2months. We have both been divorced and then found each other. He is the absolute best thing in my life aside from the kids. I have resolved that although I cannot directly help him when he is suffering I am going to try my damnedest to be proactive and find some answers and solutions! The medical community and insurance companies need to start treating this more seriously. Also the need to be made more aware of the problem and how to treat it effectively, needs to be spread in the medical community like a wildfire in order for those that suffer to find proper relief. Any insight from anyone on if they have tried to create an awareness, or would like to do so would be appreciated, as I will be doing this on my end here in Northeast Ohio. This is the least I can do for the most wonderful man in my life.
Nicole <nmgugliotta1399@hotmail.com>
Willoughby, OH USA

Thank goodness for a site such as this. I have learnt a fair bit reading through all the correspondence. I just hope to goodness there are some doctors out there reading this stuff too because in my experience they badly need to. Sorry ..forgot the intro s, my name is Jim and I write to you today from The Netherlands. Sometime during the summer of 1989 the hangover from hell arrived. That s how I came to name these attacks. It s how I best came to describe them to people .. think off your worst hangover and then multiply it by a factor of about 3 . On that day back in 1989 I was very scared as I had never had anything like this before. I was under a huge amount of stress at the time. I was living in Bushey, Hertfordshire which is about 18 miles NW of central London, England. My doctors surgery was close by in London Road and so off I went hoping to find out what the hell this was. That visit resulted in 10 minutes of humiliation. I was confronted by a very patronising doctor who asked me ridiculous questions like well, what do you think it is ..a brain tumour ..a cancer ? . I told him that if I knew what it was I wouldn t be sitting in his surgery grrrrrr. It was clear that this very important, patronising man took great exception to people coming to him with headaches . It was to be 15 years before I dared bother another doctor. The attacks carried on much the same and I think back then (its hard to remember exactly) they were more migraine orientated. The net curtain before the eyes, nausea, pounding head, depression and nothing to do except roll up in a ball and ride it our. Meantime life changed a great deal. In 1991 I decided to pack up the sack and see something of the great wide world. That led to about 10 years spent working with Greenpeace. For the best part I was working with action teams all over Europe as well as working aboard ship and I can say without a doubt that I had far more attacks during that period than any other time. Lack of sleep and stress was, for me, practically guaranteed to bring on an attack. By 2003 I was living in the West of England in a town called Bath. By this time the hangovers from hell had developed into more what I now understand to be cluster headaches. I cannot remember the manner or the time spans involved in the change, its all pretty vague in my mind. Alcohol had to be treated with ever greater respect. One or two pints were normally ok but anything more meant big trouble. Always the epicentre was directly behind my right eye, the eyes would often turn red (especially the right one) and fluid would weep from the eyes. The right nostril would intermittently block and then pour fluid. There was also a great deal of sneezing. Pain would extend along the side of the skull and often down the right side of my neck. Appetite was zero and thoughts of anything sweet were ..yuk!! The weird thing was that I was experiencing very odd fevers. It could be 30o degrees outside yet I would be rolled up under two duvets shivering. A short time later I would be burning up with a temperature. This started to really worry me. I even began to think that I may have contracted malaria during my travels years earlier. So, I took the plunge and went to see the doctor I had recently registered with who was in Great Pulteney Street. I should not have bothered. I went through it all and his contribution was to tell me of a friend who, when experiencing a migraine, could not even describe to you the workings of a bicycle! Fascinating as that was it was pretty damn useless as far as any serious attempt to diagnose the cause. I left feeling disappointed but not one bit surprised. By 2005 I was living in The Netherlands and the hangovers from hell came along too ..with the fevers. I started to keep a record of the attacks from 2005 and was, on average, having about 8 per year and each lasted on average a few days. In 2006, while suffering an attack, I bit the bullet and figured third time lucky and went to see a friends doctor. As soon as I mentioned the fevers he said that no way was this migraine. That was music to my ears because this guy appeared to at least show an interest. He took urine and sent me off for a series of blood tests, checking also the malaria theory. They detected something in the kidney but were not sure. I had further tests but by this time the attack had cleared and they showed nothing. He even sent me for an ultrasound on the kidneys but still zero. It was disappointing but at least he had tried. He advised further tests during an attack but this was easier said than done as I was bouncing around Europe a lot with my work and typically an attack would last only a few days. In the summer of 2007 whilst down in far west of England a friend of a friend who was a nurse suggested that it could all be down to sinus trouble because this can not only cause the headaches but also the fevers. I explored the internet and was very hopeful. When the next attack came I used an ordinary nasal spray and within 15 minutes the pain had subsided about 50% and within half an hour it was all but gone. I was astonished. I had been suffering for 18 years and never had anyone suggested sinus trouble! The cure was short lived as the next attack decided that it would pay me back for aborting the last one. It waited until I blasted the right nostril with nasal spray and then unleashed one awful hangover from hell, pay back time!!! At the end of 2007 I saw a different Dutch doctor with an unrelated problem. He took a urine sample for a very thorough check and they found two bacterial infections, 1)Serratia liquefaciens 2)Niet fermentatieve gram negatieve staven. A course of anti-biotic cured that and since then there have been no fevers. Where I caught this bacteria or how long I had it is a mystery but if it was the cause of the fevers then it had been with me for at least 5 years. I have had attacks this year but no fevers so it would appear the attacks triggered the fevers ..I do not pretend to understand it! Anyhow dear reader that s where I am now. It seems a lot more interest is developing by the medical profession into these conditions, I certainly hope. I find it amazing that something that can be so destructive in a persons life, and lets face it, something that can put so much pressure on relationships can be so easily dismissed by some in the medical profession. Before I go something happened about a year ago which struck a chord with a few entries I read on this site and it might help someone. Last summer we went to a nearby swimming lake. The arrangements were made the day before and on the morning we were due to go I had the start of an attack. It was a beautiful blue sunny warm day and hated the thought of ruining another social event because of these bloody attacks. So I agreed to go figuring I could just as easily suffer on a beach towel as on my bed. By the time we got there my right eye was doing battle with the battering ram, I was nauseous etc etc. Everyone was in the water having a fun time and it just made me hate this damn thing more than ever. So, in a fit of bloody minded protest, I got up and walked to the waters edge and fell in. The cold shock of the water was wonderful and amazingly within 30 seconds the pain had greatly reduced. Within minutes it had all but gone. It might be something and it might be nothing because as I have learned with this thing what works today will jump up and bite you on the arse tomorrow! Thank you for this site and thank you to all who have contributed. I hope and pray that those of you who suffer will find relief somewhere somehow. For those of you who live with them a huge thank you for sticking it out, being a sufferers emotional punch bag can be a very tough call indeed. You ARE loved! And doctors ..please read this site and others like it. Jim jimsplace@rock.com
jim
USA

Hello out there. Please I need help. I can't understand the pain. I have suffering with these for 5 years. I don't know what to do. I wake up in the middle of the night about 3:00 am. I wake up knowing that the pain is going start. I start to pace. I try to hold my head looking for that "sweetspot" to ease the pain for a second or two. I can't handle these. I have never had pain like this in my life. My eyes water, sweating, runny nose, eyes are hard to keep open. I hate these. The only consolation that i have is that its only going to last for 2 hours, and its the worst 2 hours of my life. I am 38 and a part time dad of 3 kids. I'm in great health, I walk and workout at the gym. I have tryed everything that i can think of, but they still come back Someone pleae help me!!!!!!!!!!!!!!!!!!!
Ron <rvjb@telus.net>
Edmonton, Alberta Canada

Hi All! I am not actually one who suffers from cluster headaches but the ones of u who do I hope and pray they find something to help u someday..no one should have to suffer from that kind of pain everyday of their lives. For those of u that know Patti and TIM...I am PAtti's daughter I just wanted to let everyone know about TIM... anyone who knows TIM WINGERT... he is in the hospital right now...he had a BAD!! spell this morning (7-3-08) around 3:00AM he went numb and couldn't stand up or walk...he had no control over himself or his actions...he was taken by ambulance to the hospital and is doing better right now..they are running tests to see what happened...we kinda think a stroke we are not sure. If you would like any updates please feel free to e-mail me at signlanggurl07@yahoo.com I will keep the updates coming as they come to me...HOPE everyone is well out there and hope to hear from some of u...=)
Chas <signlangurl07@yahoo.com>
Fourt Loudon, PA USA

Hi all, I have been a sufferer of CH for about 15 years. Was diagnosed when one sent me to the emergency room. I am 72 years old, and fear I have become chronic, as the demon has become more intense & frequent. This episode started in April, and is still going, although I had about a couple weeks reprieve. Always effected my left side, but this time it switched to the right. Doctor prescribed oxygen at my request as I will not take synthetic drugs. Couldn't afford to keep the tank (on rental) for the many months and sometimes years I did not have the devil. No insurance, etc. etc, etc. Pain involves an eye that feels that it will explode, temple so sore I cannot touch it, earache, and the inability to wear my upper false teeth plate due to what feels like tremendous swelling & pain in the upper jaw, and always a plugged nostril on the affected side. I find I am photophobic at times, other times not, and am unable to sit or lie still. I have to be moving. I have at times punched myself in the head trying to relieve the pain. Currently I am using homeopathic treatments. Pepper nasal spray (helps open nasal passage), hot showers work sometimes, hot coffee held in my mouth on the affected side (one cup possibly two). Am now trying raw organic apple cider vinegar (2 Tablespoons in 8 oz of water, 3 times a day) to combat the possibility of candida which may be a contributor. My wife is into natural healing, so now we are going to do a bowel cleanse, liver gallbladder cleanse, and kidney bladder cleanse. will let everyone know if this method is helpful. Thanks for this sight, it helps to know I am not alone!!!!!!!!!!
John McMahan <jrmmac@verizon.net>
Bradenton, Fl USA

I have been suffering from CH for about 1 1/2 years. I have just been diagnosed. I initially thought that I was having problems with my teeth. I went through scrapings and recently a root canal and laiser surgery on the left side of my mouth. The deamons did not stop. Then I went to my doctor who immediately diagnosed me with CH - I will be having an MRI next week. Recently I have tried Verapimil, which made me swell like a marshmellow. I also take Imitrex (pill). I stopped taking the Verapimil and my doctor will be prescribing something else after my MRI. Hot towl on the side of my face helps. After a lot o research, I am thinking that I am probably a cronic sufferer. Over the last 1 1/2 I have not had more that 1-3 days pain free. I am happy I have found this site. It helps to know that there are others that I can share with.
Rebecca
Coopersville, MI USA

Cluster headaches, 11 years now. This time around, two questions: 1) My insurance is refusing to cover the Imitrex injections - the only thing that works for me. Without the injections, it's hell - you know how it is. They say it's "medically unnecessary" and have refused my two appeals on the same basis. Has anyone run into this? Is there a way to fight an insurance company on this? The gist of it - they simply don't understand. And the out-of-pocket cost is $222.99 for a 2-injection kit. If anyone has fought a similar battle - please tell me! 2) Pregnancy. I've read that some women don't have CH during pregnancy, but I'm still worried -- what if I do? What to do? What's a safe treatment during pregnancy? I can no longer handle these attacks of pain without medication -- but Imitrex injections are out of question. For the past 11 years, I haven't had a 9-month period without clusters... So -- are there women here who have had clusters during pregnancy? I would love to talk to you about it. Last- thank you for this site. It helps so much to know that there are others who understand.
katya <zelenka@gmail.com>
new york, ny USA

Hello and welcome! You've just found the best place on the internet if you suffer from, or support someone who suffers from, cluster headaches. Please join us on the message board, we are here to help. pain free wishes, nani
nani
Los Lunas, NM USA

Hi everyone, I am having my yearly 5-6 week period with about 2-3 attacks a day and have had the clusters since about 6 years. As many of you I have tried many things to get rid of the pain and with this small message I'd like to share what helps for me; Oxygen. full stop. what a blessing that is. At the first sign of an oncoming attack, about 5-10 minutes breathing almost completely gets rid of it. I also use it if there is no pain shortly before going to bedm since it normally starts about an hour after you've fallen asleep. Also, defenitely no alcohol, especially red wine. OK, hope this helps, good luck to all of you. Regards from Trier, Germany ; Andre
Andre van Dongen <Avandongen@gmx.net>
Trier, RLP Germany

I am 50 yrs old, married (1) boy 6yrs old. I have had clusters for 15 yrs. I just found this site, thank GOD. Thanks for being here. I would like to join the community here for support. I could reallyuse some help sometimes with it. Have never been a member of a site before, maybe could use some pointers on how to get started here. Thanks
mark laubenthal <mlaubenthal@hmyace.com>
mobile, al USA

It has been nine days since the last attack. Every cluster period has been different, some of these headaches lasting up to 3 hours. Red Bull worked on and off at the beginning then not at all. Saw a new Neurologist this time, thank god he understands. Started me on 60 mg prednisone then tapered off slowly after one week, completely off it now. Started me off at the same time on Verapamil 80 mg three times a day (he told me this three times a day is critical, one large dose once a day would not be nearly as effective)(for me a wonder drug) Within 3 days of starting meds the headaches began decresing dramatically, only 2 clusters in the last 16 days (both of those less severe than normal)I really hope this helps others as this was the first time for me on verapamil (I've tried steroids before) I'll end on a hopeful note for me, my cluster periods have always been 6 to 8 weeks with remission periods of 2 to 5 years, so with any luck my hell is ending, it's been six weeks since the start. For the rest of you, I know the pain and wish you relief, talk to your Doctors about verapamil and keep positive we will beat this DEMON.
Scott Burzlaff <sburzlaf@i2k.com>
Mio, MI USA

I have suffered for 30 years off and on with the Clusters. They used to repeat every 5 years like clockwork. Now they are here every 18 months. Oxygen and Maxalt had been my friend for years. This last round they were not as helpful. Doc put me on Prednisone for 15 days, just started. I was baffled at his treatment since I had never heard about using this drug for the clusters. Your site was extrememly informative to Prednisone use. Of course, once here I have formed a kinship with folks I don't even know, who don't know me. I printed out your comments page from those loved ones who watch us suffer-I think it has helped my husband. We've been married for 10 years and he hasn't had a lot of experience with my clusters. He wants to be helpful, but we know there is nothing he can do. Gratefull for your site.
Kathy Scott <kathy.scott1.ctr@navy.mil>
Chincoteague, VA USA

This site is great
Emma Jenny Taylor <QuizManiac57@yahoo.com>
Milton Keynes, Bucks UK

Brings a tear to my eye reading the comments of fellow sufferers, knowing that i to am about the enter another bout of clusters. Have been suffering from the Beast for 20years now 35 year of age. 3 to 4 per night 1-2 hours each time but lucky they only last for 6-8 weeks. All the best of and strenght to all of us & Thanks for this, helps alot.
Anthony Moularas <e31pacer@hotmail.com>
Adelaide, S.A Australia

I am a spouse of a chronic sufferer here in Des Moines. He has been suffering for 10 years now.
Stacy <s.r.rush@reynolds-reynolds.com>
Des Moines, IA USA

Thankful to have found this site. I have just gone into my fourth week of a cycle. Can't shake it. Love insurance companies for limiting the imitrex injections allowed...my guess is whoever instated that ruling has no idea what this could feel like. Thanks again to whoever started this site.
Kris <kristinemontante@sprint.blackberry.net>
Tonawanda, NY USA

Just letting everyone know that TAURINE, in the form of Red Bull energy drinks, have successfully aborted the last few hits. I haven't been this excited for a long time, because when I first tried it during the first 5 minutes of a pretty bad one, relief came within 3 minutes, I could open my eyes again. In 5 minutes, I was "revived". Please give it a try, because this is the most hopeful thing I've tried to any success. Imitrex, Maxalt, O2, exercise, melatonin, etc - these might have temporarily shortened an attack, but the beast gets angry, and comes back with a vengeance shortly after. The Red Bull has so far been very promising. It really was miraculous, and I wish I could explain how great it felt to actually feel the attacks subsiding as the Red Bull was being distributed throughout my body. For background, I haven't been on any prescriptions for this episode, so it was just the taurine. I urge you all to give it a shot. Couldn't hurt any worse, and you might just see that ray of sunshine through the clouds without wanting to stick your fingers in your eye and pulling it out. Cheers.
Seung <lelacks@yahoo.com>
ca USA

Hi my name is sarah ,and iv been suffering from clusters since i was 18 now im 34 ,, it feels like im out there on my own as there isnt alot about cluster ,,, till i saw a few web site i couldnt believe how many people out there wat as got it, i feel for u all ..CLUSTER TIME ,,When my clusters started years ago its different now its worse the pain i cannot take anymore ,i got it bk in november 07 i started taking my tablets to catch it but i didnt i was in pain from 07 till june 08 i didnt av a break in between like i used to it was like 4 times a years there would come on but now i dunno wen coming they av changes patterns ,,i went bk to c my nurse and she gave me another things to try grrr,,its a injection in your leg wat u do yourself iv not tried it yet aving a good week ,, then wen it comes bk stong im aving the nerve injection in the side ov my head ,, but all i keep on getting is TABLETS i dont seem to be getting anywhere for them to stop the pain ,,if anyone know alot about it and u e mail me plz thank- you all take care sarah
sarah <sarah_carter2006@hotmail.com>
Hull, England

Not wanting to go to sleep because of the HEADACHE thats waiting for me there!!!!!
lemonhead <lemon714@live.com>
north platte, Ne USA

I have been suffering off and on with clusters since 2002. I have talked to my doctor and he recommended to take Relpax. Has anyone had any luck with talking Relpax on the verge of a cluster?
Eric <eric.nuke@gmail.com>
Dallas, TX USA

I've been a sufferer since my early 20s (now in my late 30s) and although the attacks have become less common in the last few years I still get the occasional bout of intense pain. As many other sufferes are aware, alcahol can bring on an attack, as can sleep. But I have some useful info I can pass on to fellow sufferers. I have found that running my head under very cold water during an attack does bring some relief. It will not take the pain away completely, but it seems to help me. I hope it helps some of you also.
David Sorapure <zoroporo@hotmail.com>
London, England

Cant believe I just now found this site. Was literally in tears reading the comments by people who actually understand what I live with. Nobody I know personally has a clue. Family, friends, work, they all think Im a big wuss. Wish I had a nickle for every time Ive heard "Its just a headache. Deal with it."Makes me want to go postal when I hear that. Tried to do this yesterday but something seems to be wrong with this site. Anyone have advice how to register? My email is Laughlinted@yahoo.com and Id really like tomeet some fellow Clusterheads on line. God bless you all. Keep the faith! Ted, Frisco, Tx
Ted Laughlin <Laughlinted@yahoo.com>
Frisco, Tx USA

Hello - I had my first cycle around April 2007 and it lasted about 2 months until I went to the doctor who prescribed imitrex injections. One injection put me in remission until recently. I have experienced one or two CH's over the past 2 weeks, but not the 2:30 AM like clockwork nightly episodes (although this may be the calm before the storm). As before, reading the message board let's me know that I'm not alone with this. Thanks for being here!!
Otto <obibb@kpmg.com>
Silver Spring, MD USA

Cant believe I never found this site before now. Was in tears reading the opening testemonials. Finally, after all these years,I realize there are people out there who really do understand!
Ted Laughlin <Laughlinted@yahoo.com>
Frisco, Tx USA

Hi everyone, I have recently been diagnosed with cluster headaches and have been suicidal while the docs play with my meds trying to find a suitable preventative for me. I am not allowed pain meds for the next month so the docs can see just exactly what they are trying to treat. I am halfway thru my original 60 days and also suffer from chronic persistent daily headache and migraines. I never knew what hell was until I got one of the Demon headaches. I cant even meditate anymore. I listen to heavy metal and dance around looking stupid and banging my head on things during an attack. OMG is there any hope??? The oxygen the doc gave me helps when I can get to it in time but I spend a lot of my time at school trying to learn Danish and want to go to college. Is any of this even possible with the Demon attacks?? My boyfriend cries with me during attacks out of helplessness and frustration. I feel bad for him but we dont know what else to do. Please any advice would be gratefully accepted. Keep your chins up. There has to be a way out of this. One of us will see it. Sophia
Sophia <madamesophia2004@hotmail.com>
Denmark

My husband was diagnosed with CH about 10 years ago, with the first attack sending us to the emergency room for a shot of Demerol. Up until now he has been episodic, with attacks coming once per week, lasting 2 hours for six weeks. In between he would have 18-24 months off. This last round started in April, went 14 days straight, 8 days off, 5 more days on, 8 more off, 2 in a row, 8 days off, one more this past Saturday night, now 6 days off, no shadowing since Monday. He takes verapamil daily, Imitrex nasal to stop an attack but our insurance only covers six doses per month. We are desperately hoping he hasn't gone chronic as this is the first time ever he has had this many. Finding this site has been a life saving event for us as knowing he is not alone has revived his spirits. Finding more information on what works and what is available to try has been invaluable. Being able to bring information TO his doctor (like uping the varapamil dose) has made so much difference. Thank you, thank you for the support that you offer. Not only has it made my husband not feel so alone, you have given me the ability and the language (the kip scale, shadowing, etc.) for understanding what exactly he is going through.
Emily <schild4@comcast.net>
Denver, CO USA

I am a 36 years old female who has suffered from these horrible, knife in the eye, screw to the brain attacks for over 15 years now. Each year is always different. Some worse than others. Last year I had only a few, lasting only a month. This year is the worst. It's going on 7 weeks now and every night I get less and less sleep because I am afraid of falling asleep only to be woken up by the same knife and screw that are being rammed into my right eye. I take a pill and 30-45 minutes later, after pacing, crying, squeezing my head, cold washcloth, rocking and finally telling "it" to just go away and leave me alone, the pressure subsides slowly as it started. Praying that this one will be the last one until next season, only to find 2 hours later "it" returns. Worse and even stronger. Another night of non-sleep. I would not wish the pain that occurs with these headaches on my worst enemy, so why does it have to happen to all the nice people? May peace, sleep and pain free nights find all of us one day!!!!
Melinda Williamson <mwilliamson71@yahoo.com>
Olney, IL USA

Again, this evening I hope not too experience the pain I have been going through for the last 2 weeks. This is the most painful yet!!!!!! Have been a sufferer for the past 8 years............ but my! they are getting worse. Ice-cold no longer works. Only the pain gets more excurciating..... Please give me some tips on what may or not work???? I am desperate.........
Lizzie <curvytree2@hotmail.com>
walsall, ws8 6ee uk

haven't been diagnosed with cluster headaches yet, but i'm pretty sure that's what i've got. wanna rip my eyeball out of the socket when they hit. hot and cold showers seem to shorten the pain, but maybe its just the ritual i go through that gets me through them...i'm not sure
Jeremy Bass <jeremybass1976@yahoo.com>
Dothan, AL USA

My fiancé gets cluster headaches, has done for the past 4 years or so although we think longer it s just they were diagnosed then. We had a break last year but they ve come back with a vengeance. I feel so helpless when it hits him, what can I do? I ll rub the back of his neck, get him a cold cloth or simply listen whilst he is in the foetal position in the shower to make sure he doesn t drown! I hate to see him like this and I ll say the annoying things like just try and get some sleep or you need to be strong and I know that doesn t help him at all he can t sleep and he s so exhausted that he can t be strong. I curse myself when I get up, so tired from yet another night s restless sleep, I can be so grumpy with him. Once I leave the house I realise what I ve done but I m just so tired. I now count to ten and remember the tremendous pain he is in. He has the jags and cupboard-full of drugs, none of which really work. The oxygen helped a bit but as we live in Scotland we can t get oxygen within our home on the NHS, it would cost a fortune privately. So we have to go to the A&;E (ER) but by then (after an awful half hour journey) it s often past the worst of it as we don t phone the hospital until it s at its peak. It s been about 3 weeks now so hopefully they will be gone soon for another year please. I m thinking of you all who have to go through this awful condition.
Karen <karenpink20@aol.com>
Scotland

Hello everybody, 5 years have passed since I fight the beast. At first I was episodic, now I'm chronic. 2 at night, 1 during the day, all lasting around 1hour, 1 hour 30 mins. Pacing in a room does help me. And you know what else helps me (besides the large doses of coffee, sumatriptan pills and oxygen hehe) - every step that I take I repeat to myself "I will defeat you, I will defeat you" cause I know that there are other people. You, guys. You survive it every day and I HAVE TO survive it as well. I will not surrender to the beast!
Georgi Iatzev <giatzev@abv.bg>
Sofia, Bulgaria

Dear Fellow Suffers; I am a CH sufferer and have been since 1991. I have tried Oxygen, Sansert, Triptans and steroids but to no avail. My episodes are extreme, often lasting 3 hours or more anywhere from 4 to 8 times a day for 16-26 weeks once a year. I get the sweats (dripping) my eye swells shut and the dilation is so severe that the side of my face is visably swollen. I have over the past years interacted with the world as a zombie having not more than 3 hrs sleep per day. My episodes intensified in December of this year reaching a intensity that literally blacks out time, where I will sit for hours in the bathroom not knowing how long I've been there until the episode subsides. Having been to neurologist after neurologist with little new or helpful ever being accomplished. I began working nights as I could hide when I needed to pass through an episode, and found that I would go entire nights without an episode!. I would still suffer during the day, but the intensity would be lessened. I began analysing the various factors in my daily routine which would bring about such a substantive change. I found that coffee had become a regular part of my diet on the overnight, and wondered if caffine (a vaso-constrictor)might be the culprit. I began to restrict my caffine consumption gradually and found that the episodes returned vengefully. I then began to increase the intake only to find that the episodes again abated at night, and were lessened during the day. (Mind you there seemed to be a threshhold whereby they were actually intensified). At a dosage of approximately 300 mg of caffine per day I was able to function normally (still with pain but managable). I now suppliment with over the counter caffine pills (100mg) thrice daily and find that I am able to keep the actual attacks at bay for several days at a time. Though I still experience the odd severe episode, it has been weeks since I've had the regular 4-8 episodes. I am not sure if this will continue as such but hope it helps someone out there. I do feel your pain.
Darren Skomorowsky <darren.skomorowsky@fairmont.com>
Toronto, ON Canada

I have spent the last four hours or so reading the comments of CH sufferers and have not come across the word "Torture", yes "Torture". What CH patients suffer from is Torture and not physical pain. Waiting for the next attack is akin to waiting for the next torture session. I have been suffering from CH for over 40 years, every year at the same season, lasting 2 to 3 months, with 3 to 5 attacks a day occurring the same time of the day. This is lunacy to many!!! I find that drinking a lot of water decreases the number of daily attacks and helps to decrease the severity of the torture. Many times 100% oxygen works well for me, I keep a bottle of oxygen at home. I also find that food type has a lot to do with the frequency and intensity of torture; during cluster period I learned to limit my food intake, breakfast, lunch and dinner, to vegetables, mainly watermelon, with white cheese and bread. Good luck to all CH patients; have less pain
Raouf Kharouba <raoufk@wanadoo.jo>
Amman, Jordan

The Demon is back!!! He has been gone for three years now, but he is back and I live in fear once again. I am 42, they started when I was 18. The medicine doesn't work, there is a cupboard full, enough to tranquilize an elephant, but not enough to kill this demon. I live in fear, the hour is approaching, minute by minute and I can't stop the clock and I can't look away, tick, tock. He will leave, he always does, but not without taking some of me, some of my life, with him, only to return tomorrow, or next month, or next year to take some more and meanwhile I live in fear.
Scott Burzlaff <sburzlaf@i2k.com>
Mio, MI USA

Hiya, Im 24, female and live in Kent, South East England. I had my 1st cluster last Summer after coming home from a holiday to Florida. Started late August, ended late November. For the first 8 weeks I had no treatment at all. I had been to see my Dr and was diagnosed but he wouldn't prescribe me anything becuase it would effect the medication I'm already on. Then I just couldn't put up with it anymore and bought OTC drugs, Nurofen and eventually found sumatriptan (Imigran) tablets. After that I looked on the net for something I could take that wouldn't effect the meds I was on. Turned out Sumatriptan was fine for me so went back to the Dr. who finally prescribed me the tablets as well as Pizotifen and booked me in for an urgent appointment to see a neurologist. (When I asked for the injections, he literally laughed me out his office becuase of the cost of them) I didn't get an appointment until mid December but thats the NHS for you! I was told I could take up to 6 Sumatriptan tablets a day and I usually had 4-6, sometimes more attacks in one day. Each time I had to ask for my Dr for a new prescription he would only give me one days worth and it took 3 days to get the meds to the pharmacy so I could pick them up. By the time I saw the neurologist they had stopped and she just said to continue the pizotifen for 6 months. During my cluster I couldn't do anything, I couldn't go out or talk on the phone because the pain in my head, eye, ear, neck and shoulder was so intense. I couldn't even put my hair up because the weight of my hair was making the pain worse (I even considered shaving my head!). I started wearing a hat and shoving a scarf up the right side of it so I had some pressure on my temples. The pain was always on the right side. I tried stopping smoking and that didn't work, I don't drink so I knew that wasn't triggering it. I spent £250 ($500) to have a test to see if it was a specific food I was eating that might have caused an attack but got no information from that either. A few nights I ended up in A+E, only to be given a very strong painkiller (tramadol) which didn't help at all. I wouldn't of minded if it put me to sleep but it didn't do anything. After my headaches I was sore for ages from all the muscles I'd tensed from the pain and the muscles I'd used to try and stop it from hurting so bad and of course with the soreness of eveything down my right side I didn't know when a very intense one was on its way until BANG!!! I'm now organising a holiday later in the Summer but am absolutely terrified I'll get another cluster! Its weird becuase when they had stopped for a few hours I thought to myself, "they really couldn't of been as bad as I thought it was" and then one hits and OMG!!!! was I wrong? YEEEESSSS! I'm going to book my holiday soon but am buying the OTC Sumatriptan before I go. I'm still on the Pizotifen at the moment so hopefully that will do something to prevent any further clusters, Wish me luck!!! Vikki xo
Vikki <Duckieq@msn.com>
Ashford, Kent England

Finding this site has given me courage, a piece of sanity and most of all knowlege. As bad as the CH pain is, to see the suffering my family goes through is just as intense. I hope to take in as much information as possible to limit the impact this has on the people I love. Thank you so much!!! Wishing everyone freedom from pain.
J <CH.Hale@live.com>
USA

The "Demon" is back. Its been seven months since last attacks. Been to see Nuro had MRI scan and started Varapimil tablets, didn't expect them to work. Having a lot of trouble sleeping as these attacks always accur two hours after falling asleep. Cycle started 8th May with two attacks at night tnen went three nights without any, thought it was to good to be true, now suffering big time. Still using Imigran nasal spray, but for this to be effective you have to get it at onset, pretty hard to do when your asleep. Found high flow oxygen to be effective in the past, but hard to get hold of without going to hospital. Must try to get some sleep now.
Graham <grahamclaire@iprimus.com.au>
Melbourne, Vic Australia

I recently got diagnosed with cluster headaches and it's been a roller coaster ride for the last few months of sleepless nights, stressful days and moments of feeling like I was going to go nuts; and I can't say it's been much of a joy ride! Woo! I'm glad to have found a group of people I can relate to because I was feeling a little lost! Now finding a middle ground and coping tools with it is my biggest struggle now! AH!
Nikki <lillylanceston@yahoo.com>
Colorado Springs, CO USA

Wow, after 12 years of suffering, from the beginning I was told my only option was to go to the ER for O2. It didn't work the first time. I tried Imitrex for the first time in Jan. It worked. I went through a 5 week hell, with a limit of 3 stat doses/week. There was no way I could obey the 3/wk rule, so I ran out......worse!! So now, I'm pain free 5 days. My neurologist has given me ample supply (2 weeks worth) and I can go to Birmingham (2 hours) for more from the Vet's Administration. I would LOVE to meet someone in the Huntsville, AL area for support ASAP. My family and friends don't understand. If this happens again, I'm gonna lose it.... "you look tired" "I get cluster headaches.....They are excruciating, and happen every night" "I get migraines. You'll be fine...just get some sleep" This is where I visualize grabbing whoever by the throat.
John Galipeau <jsgalipeau@yahoo.com>
Huntsville, AL USA

Hello all,glad to find you but sorry to be here! Just coming to grips with diagnosis of CH, had for 4 years now. Want to join and post,have so many questions! Not able to register on message board,have IE7 and firefox built in my computer but still dont see verification code. HELP,if you had this problem email me and let me know how to get set up please. Look forward to sharing our pain.
Doug Bonardi <bonardidoug@yahoo.com>
Omaha, NE USA

I am thankful for this site...newly diagnosed with cluster headaches...almost five weeks straight with one.
william <wjb555@gmail.com>
san diego, ca USA

I just started having cluster headaches 7 months ago. I am 44, female and frightened that my life will never be the same. I suffer between 3 and 5 a day. They last about 45 minutes each. I hope to understand more about the hell I am going through by joining this group. H:)
Heather Thompson <heather.e.thompson@sympatico.ca>
Huntsville, ON Canada

Hi to all i am going through a cluster at the moment,it is my third lot in 12 years and normaly lasts for 4 to 6 weeks of hell.It is both good and bad that we have found this web site good because at last i know that i am not alone and bad because i feel deeply for all of you who suffer from this painful thing. It really has helped my partner to understand the mood swings and the isolation to a dark room, sitting standing walking around in circles and for this i thank you all. Andrew Bell
Andrew K Bell <akbtechnologies@yahoo.com.au>
Sydney, NSW Australia

Just thought I'd sign in to meet others who shouldn't be in this hell. No one should ever have headaches like this!
Neal Strickler <Nealsoldschoolpainting@hotmail.com>
Fountain Valley , CA USA

Hi, I have been having CH's for several years now (not all at once). It started up again last weekend. I have to sit up in a chair and not move to get any type of rest. I am not a pacer, but I know my limitations. Right now I guess I am usually at a 3 on the kip scale. The water helps me a lot! I just found this website today and I had to show my family! I am not crazy after all! Thanks, Elaine
Elaine Ames <elaine_k_ames@yahoo.com>
Melbourne, Fl. USA

hi, I just got back from the doctors, and he diagnozed me with cluster headache (saying he heard of it last time in the medical school 20 years ago!!). I remember having it for the first time when I was 14, 15 now Im 21 and its back, for the last 2 months every Friday or Saturday. Horrible pain, all day long. Its good to know there are more people like me.
Olga <gzella@wp.pl>
London, England

hello! just started another cycle after being cluster free for 2 years i thoughht they were behind me. depressing. imitrex works for me but i didnt have any after so long so i had to "tough out" the first couple of headaches. MAN! i had forgotten how nasty they are. 1st one lasted 1 hour 15 min then the 2nd one got me for 3 hours! i can feel it sittin there waiting to come out anytime now. crapola!
mitchell lutzke <dispatch74@yahoo.com>
portland, me USA

Oh yeh I just wrote in but forgot to say viruses tend to trigger a bou. I got a flu shot once and that triggered a nasty bout. later Mick.
Mick Naum <max@sti.net>
ahwahnee, ca USA

Well howdy gang, I've had these bastards since 1974 and have run the gauntlet with every kind of bout ( nitetime daytime sleepers ect.) and found every bout has it's own set of "rules". What worked last time doesn't work this time so I try the new stuff as it comes out. What I have learned is that pain killers don't work. They work on nerves but between the pain site and the brain ain't much room to work. I've found vaso-constrictors are what work the best at the onset of any inkling of the beast making an entrance. My poor man's fix is extreamly strong iced coffee then doing push up's until I can't do any more then inhale exhale until I can't any more. NO alcohol at all. smoking doesn't matter (vaso-constrictor).If the thing gets going there is no stopping it until it's done.So I've found that each bout has it's own timing that you have to figure out so you can hit it early on,by getting the vessels in the contracting mode.Imitrex or ergots work the best but ergot is dangerous and imitrex is expensive and elusive.Good luck to you all, I'm typing this as my latest bout started 1 wk ago (it's been 4yrs since my last bout)and now I'll see if I can get my boss to understand what these do to a human.lost at least 3 jobs due to these rotten bastards.Later days; Mick from Ahwahnee Ca.feel free to e mail I wrote the book on these things max@sti.net
Mick Naum <max@sti.net>
ahwahnee, ca USA

I have just found this site. Glad I'm not alone. Have been suffering for over 30 years. Last cluster finished 5 days ago after 6 weeks of hell. Five a night every night. Nothing eases the pain. Absolutely exhausted. Wife very supportive but no one really understands. Don't ever give in!
Ian Watson
Perth, WA Australia

Hello all, Found this site after taking the beast seriously. I am a 50 year old male, smoker, occasional drinker. Was diagnosed with CH after Horners Syndrome, left eye in 2001. Started as severe sinus pressure and headache. At the time I was doing a lot of woodworking and thought wood dust had irritated my sinuses. CH left me, but is now back after 7 years. Could it be the spring pollen? Has anyone tried the "Pepper Spray" nose sprays? I went to Dr. and he is treating me for sinusitis. I think we all know that it's a waste of time. I ordered some of the pepper spray and will let everyone know the results. My thoughts to all.
Mike D. <mike8783@earthlink.net>
Frankfort, IL USA

Boyfriend suffers is clusterhead and came here to get some information and advice.
Dawn Vickery <inndinbrat@netscape.net>
Turlock, CA USA

My first suspected attack was January of 07, 2-3'events'a day over the course of 2 and a half months. I thought, and my doc thought, it was a drug resistant sinus infection. It cleared up I've been fine. Until last month. It's back- and getting worse every day. Today I really wanted a gun to put to my head. For about 45 minutes I kept thinking of Jack Nicholson's line in the 'Bucket List': 'Somewhere some lucky bastard is having a heart attack.'. Wish me luck, and good luck to all you too.
Randy Vankoughnett <r_vankoughnett@fanshaweonline.ca>
St. Thomas, ON Canada

Hey brothers, Sorry bout your hell... been going through mine since age 17, I'm now 41. Thankfully I have a wife now who takes good care of me and dont steal my meds like the first one. I have to work for myself so naturally I cant get prescription insurance so I have to work insane hours to be able pay for my 02 and imitrex. My wife had great insurance but her job went to Mexico so shes back in college. I have never spoken with anyone that suffers my hell so I am glad I have found this sight...PLEASE anyone who suffers clusters contact me!!! Dont want anything from you just conversation!
JOHN NELSON <thejohnnelson220@hotmail.com>
BAXTER, TN USA

Hi everyone. man i though i had the beast beat. boy was i wrong. just has to go to the the hospital and had major surgery and when i got out my CH's came back and it's been years CH free. WOW geting the shit kick out of me again. Boy that bring back the old days. back to the fights. who knows who's going to win this round. Could be the big KO for me.
john stockwell <oracle1960@yahoo.com>
greenville, NH USA

Just ran across this site. Suffered from cluter headaches for 8 years. Really shouldn't say headaches...it just seemed just I had only one headache that lasted for eight years. Excruciating pain continually. Was diagnosed with severe cluster headaches by a neurologist who then taught me a form of biofeedback (is now called biofeedback was then called visualization)...and I added laying an ice pack to the veins on my neck to reduce vein size for 2 to 4 hours a day. After about a year I could do the visualization type of biofeedback easily and, miracle of miracles, the cluster headaches left and I have none since (over 40 years now--my cluster headaches started in my 20s and I am now close to 70 years old. Only reason I am writing is to share my experience in the hope that someone might be helped. I still remember the pain. My advice...you might try finding a neuologist who can teach you the biofeedback methods...and I don't know if the ice packs would help you, no doctor ever told me to do that..I just experimented with that on my own. Good luck. I know how you are suffering. God bless.
ann price <karyl123@aol.com>
stillwater, ok USA

My first experience with a cluster headache came at about 2 in the morning at 23 years of age. I have had these horribly painful headaches every year for 25 years. However, I have not experienced any cluster headaches after I quit smoking 2 years ago. Is there a connection? I think there is.
Daniel E. Cota <daniel.cota@cox.net>
Tulsa, Okla USA

My husband has just been diagnosed with CH and so I'm in the "research" stage to see what we can try to help reduce his suffering. Unlike some of you we were very lucky, due to his previous history - having a brain cyst and shunt 20 yrs ago and its various complications over the years, he only suffered for 2 weeks before being diagnosed. Mind you I was either at our GP or A & E every other day (history has taught me to pester until you get the help you need!!). I completely relate to some of the comments about how much meds you are allowed to take - tell his head he can only have 3 attacks a day! I'm very curious to see if the water treatment will help because at the moment he is on sooo many drugs that the few hours he is pain free are spent feeling so woozy that he has even less quality of life than he did 4 weeks ago, - his condition is further complicated by having Menieres Syndrome and chronic depression as a hangover from the cyst. I would be very interested to hear from anybody who has CH on top of other neurologic complications and how they deal with it. This site is fantastic and I thank everybody who has contributed to it as it has helped me so much to try and understand this further complication to his life. Suzie
Suzie Riggs <suzie.riggs1@btinternet.com>
Tonypandy, Mid Glam South Wales, UK

Greetings, before I found this site I thought I was dying... now at least I can take comfort in knowing I have a managable handicap. I'm curious however about the causes of cluster headaches... some research has found that herpes simplex is somehow tied to this strange occurance. Any comments? Best regards, E.J. Lister
Edmund Lister <ejlister@telus.net>
Chemainus, BC Canada

I am 57 years old, my episodic CHs started when I was 18, and I am currently going through my first bout with them in 8 years. Since moving to Florida 7 years ago,and a simplier, happier life style, I thought that I was done with the beast. Until 2 weeks ago. The one thing I noticed was that this past 3 months was the first time I was stressed since the time of my last siege (and all the bouts before then.) So, in my case, I've come to the conclusion that stress triggers the attacks. I appreciate finding this website since I never met anyone who had CHs. Lot of great info. For many years, like many of you, my condition was misdiagnosed and only the Cleveland CLinic in 2000 was able to tell me what I had. I'm taking some of the info that I found here to a doctor today so we don't waste time. Good luck to all.
Jerry Kovar <kov22334@tampabay.rr.com>
Bradenton, FL USA

I just found out that the Hell I am going through is likely cluster headaches with "something" overlapping (MRA & new MRI are pending) which causes me neuralgia and electrical waves of pain on top of the excrutiating pain that is my daily life! The descriptions on the first page so sound like my life lately. I look forward to reading about coping mechanims. Thank you for this site! Lisa
Lisa
Hopkins, MI USA

Hi, I found this great site today! I've had CHS for 1 year,chronic,4/7 nites per wk, 1/2 per nite. My 4th doctor finally diagnosed right. Not sinus, not migrain, etc. Just now starting proper meds, instead of "pain killers"(haha). Nothing has worked very well other than other than pacing around the room or walking in fresh air. Thanks for this great informative site!
Larry <LSimp01@aol.com>
Springdale, Ark. USA

I feel a bit emotional coming to this site. I have never known anyone who deals with cluster head pain like I do. No one around me can understand. Many doctors don't understand nor do they believe I am in that much pain. They've humiliated me and ignored me so much I go through stages where I can't bring myself to go into one more clinic or hospital. My pain is chronic, I never get a break from it. I've found a few things that have helped me to the point of being able to do some things. But my life has gone from being very active to....to just being thankful for a few minutes in a day where I am not in agony where I can appreciate a simple flower, or snowflake or something that in another lifetime wasn't my saving grace. This has taken my life from me and for many years I have been trying to find a way to live with it and figure out how to improve what I have left and accept what is lost. Thank God for oxygen tanks because without them I wouldn't even be able to sit at this computer and write to you. I just want to sit back and read some of your posts and maybe see a little of me in there, maybe see a little hope, or maybe find one person who truly understands. Thank you for your time, Josie
Josie
MN USA

Hi. My husband has had sinus problems for years - at least that's what we were told but I'm starting to wonder now. We went out to see friends last weekend and he had alcohol. He had a bad headache that lasted two days and we put it down to sinus - location of pain, temperature, watery eyes etc. We went out to see friends this weekend. More alcohol. Early hours of this morning, 1am, he gets this "headache". Same symptoms; temperature, pain around his eye and cheek, dizziness and some nausea but only when he tried to take paracetamol (acetaminophen to the US people here). Eventually this got so bad he begged me to call the ambulance. You've got a headache dear, you don't call an ambulance for this. Well, apparently you do. They were wonderful - didn't know what it was, suggested trigeminal neuralgia but took him off to the emergency room. After two hours laying on a gurney, a young female doctor administered oxygen and diagnosed cluster headache. The oxygen really helped and then she prescribed some analgesics and lots of sleep. Being a bit of a "net junkie" I came and found this site and its like Paul on the road to Damascus; talk about scales falling from my eyes. This just makes SO MUCH SENSE. I think he's had this for years but its been misdiagnosed as sinus. I can't thank the originators of this site enough. Hubby is going to the doctor in the morning for a referral to my neurologist (I have benign relapsing remitting MS) and I'm now about to deliver water in large quantities. Oh, and NO MORE ALCOHOL!! Just one question - does it worsen when you fly? Thanks again.
Susan <susan@loweandco.co.uk>
Bedford, Beds England

hello all ive been suffering chs since i was 19 and am now 41.Its about three weeks in now after agood 2 and a half years off,nights are terrible waking up 3 to 4 times every time my eyes seem to close i wake in pain.I have been taking nasal spray (SUMATRIPTAN) wich is good but are only aloud 2 a day so other times it just ice and head squeezing.well hope all of you are not in to much pain and are soon pain free ,good luck
jeff leeder <jeff.leeder@ntlworld.com>
kempston, england

So glad I happened upon this site.
Sam Zartman <zartmanlocal@comcast.net>
Hanover, PA USA

Hi to all the brave people in here who suffer and fight the same beast, LYG. I am not new here but my proffesion keeps me busy sometimes but here i am here again after 18 months of remission . I am an ENT surgery consultant and i have been studying that beast for the last 15 yeasrs my self and with my neurologists colleagues , I came up after all the studies and the trials on myself that the best combinations to make the pain and the frequency less and makes you go to the remission phase faster is : Pridnisolone at the begining of the cycle 80mg and tapper it down over 2 weeks , combined with verapamile 160 mg in3 devided doses and increase the dose according to the severity of the pain and the worst time of the day , you can reach up to 480 mg a day without serious side effects . Imitrax is the only fast solution to kill the pain when you have the attack . I wish you all pain free days Hisham
Dr.Hisham Tawfik <tawfikhisham@gmail.com>
Cairo, N/A Egypt

Hi again, Has anyone ever tried light therapy--it is usually used for seasonal disorders--which I tend to have. I just ordered a light. I am curious because so much talk is about Seratonin levels and taking melatonin and this is what these lights are suppose to help regulate. I am in about week 5 w/ the beast. Mine show up about every 3-4 years. I am going to try this. It is an Apollo Lite. I will keep you abreast...Wishing you all the best--and a pain free day...
jenn hammack <jhammack4@aol.com>
corvallis, or USA

Hi--Just found this sight. Just feeling so alone and frustrated. I am lucky to have a supportive husband. I am sick of being in pain! These can really bring you down. I am going on about 5 weeks now. Thought they were under control and just had another this morn
jenn <jhammack4@aol.com>
corvallis , or USA

hey. i have been reading through this web site and i would like to add that there is one thing that works 95% of the time.... and its more fun and healthier then any madicine available... S E X !!!
danny <dany@penguin.co.il>
victoria, tx USA

I had cluster headaches about 5 years ago. At the time I was abusing cocaine and was blaming most of my headache pain on that. I had the Honyer's Syndrome, runny nose and most of the symptons of cluster headaches. It was a really bad time in my life! December 1st of 2008 will make 5 years that I have been drug free!! I still take it one day at a time. My problem now is that I believe that the cluster headaches have returned. Since the first episode I have divorced, remarried and now have a 7 month old son and a 9 year old daughter.I had to retire from my job due to a liver discease that required chemo treatments. I know now that it's not cocaine that's causing the pain. The pain comes on within minutes, 5 minutes or so, and last anywhere from 30 minutes to a couple of hours. Once the pain starts to subside it only take a few minutes for it to be completely gone. I had an attack last night that woke me from my sleep. I don't have the runny nose but I have had the droopy eyelid since the last time. It never really went away completely. It was worse on some days than others. Luckly now I don't have to worry about missing work or anything like that. Now I have to worry about my children and how this will affect them. I guess what I'm saying is .....I don't know! Did I suffer from them back in 2004? Is this what I have now? I did go to a neurologist back during the first episode and he diagnosed it as cluster headaches. He gave me Imitrex which did nothing. I found your website back then too and posted a comment on ther but I can't find it. Should I go back to the doctor? Right now I'm not sure what to do.
Ed Pigate <jpigate002@sc.rr.com>
Florence, sc USA

Hi, What a good site! It is good to be able to read how others deal with this. I used to be plagued with Migraines but they have been replaced with CH's. They were quite mild, but now the pain is beginning to increase. I have been given Almotriptan to try, so will give it a go.
Gillian <smiles_953@yahoo.co.uk>
Market Harborough, Leicestershire UK

Hi, all! I suffer from CH for 5 years now. It visits me every year. I'm glad that I found this web site and so many people have same problem as mine. I am not alone!
Meg <meg_nug@yahoo.co.jp>
Ilford, Essex uk

hey. my husband had cluster headache that have turned to cluster migraine. he started having them about 10 years ago we tried everything.... . lately we found that as soon as the pain starts he drinks a"full throttle" energy drink and that takes the edge off the pain, dosnt make it go away but makes it bareable!!! it defentily beats the altrnative of taking imitrex or any other pill... .
danny <dany@penguin.co.il>
tx USA

First off, thanks for the info. As we all know, there is no other pain quite like the pain of a cluster headache. Herre's my dilemma, my insurance company (highmark)apparently thinks this is some "fad" diagnosis. They cover 9 pills a month for Imitrex. Seriously. That lasted a week. I've done accupuncture, massage therapy, chiropractic adjustments, melatonin, etc... it's been nearly 20 years since these started and honestly I'm just worn out. 3 hours of sleep a night for 2 months... I feel like I've walked onto the set of a Salvador Dali painting. Any info would be greatly appreciated.
Tony Ryder <amryder4@verizon.net>
York, PA USA

I got my first cluster headache a month ago. It lasted for 3 weeks. I didn't know what it was I just knew that I was in agony. I read on the website that some people have maybe a couple of headaches a day and that they would go away. Mine weren't like that. Mine started from the minute I got up in the morning and lasted till I went to bed at night and even at that sleeping would not get rid of them. I would not be able to sleep with the pain. Everyday they seemed to get worse until one day I found myself in the kitchen with my head in my hands moaning in agony. That's when I decided I'd had enough and brought myself to the doctors. I thought he would just say that I just had a headache and to take some paracetomal and to go home and get some rest but he diagnosed cluster headaches. At the moment I am pain free but I can completely sympathise. And from reading this site I know that the headaches are going to come back eventually and I'm not looking forward to the day they do.
Jenny <salemsinead@gmail.com>
Ireland

Been suffering episodic clusters since I was 19 (am now 50) and am in a prolonged clueter episode now. Was misdiagnosed for decades and have used Imitrex for several years. The oral (50mg) Imitrex worked very well for a few episodes but started to loose its efficacy about 3-4 years ago. In response (desperation) I developed a form of self hypnosis/meditation that seemed to work for a while. It consistend of intently focusing on the pain point with the result that my breathing got very shallow and when successful would lead to a breaking up of the concentrated pain and nausea. I'm now in the middle of a cluster that has lasted over 2 months (getting a debilitating headache every 2-3 days) and the self hypnosis/mediatation treatment worked at the beginning but has not worked for the past several weeks. I have begun taking Imitrex again but it has only worked about half the time. I am of course desperate for a better solution and will be focusing more on my diet and sleep and excercise in the hope the lifestyle changes will make a difference. Glad to find this site and hope that all cluster sufferers find relief and peace.
Thomas Bregman <tbregman@gmail.com>
Washington, DC USA

Hi again . Thanks for answering me Judi. I just went to a acupuncturist yeasterday I don't know if it will help or not but it is worth a try. Do you guys always have soreness in the back of your head near the base on the same side as the headaches?
ginny <misty4923@aol.com>
mercerville, nj USA

Hi All, I have suffered the demon headaches for 22 years on and off, and just when I thought I safe - they have returned after 5 years! For the first time a doctor has prescribed Oxygen - and what a result!! It has certainly helped manage the real deal agony I get halfway thru a cycle. special thanks to my wife for supporting me, couldnt do it without her.
John Sheridan <john.sheridan@cwgsy.net>
Guernsey, Channel Islands, UK

I almost cried, when I happened upon the home page of this site. As It reminded me of what torture was coming. I thought I was pretty tough until six years ago this Spring, it's now by far my least favorite time of year :( Because as my plane decsends the pressure increases...until I land in HELL! HELP.
Corey Canniff <canniff@hotmail.com>
Calgary, ab Canada

Hi, I suffer from CH every year and a half and lasts for 3 weeks. I start with Prednisolone at the earliest to control the number of attacks and Use Oxygen 10 lit/min to break the headaches. If everything fails uses Imigram 6 mg s.c injections. Try to read imitrex tip on this web page and use an insulin syringe (1 ml) and empty it into it and use it to inject it. Be careful not to spill it when transferring. See a neurologist and get advice as well. Good luck. Still waiting for my headaches to be over.
Pancha <drpancha@gmail.com>
Sydney, NSW Australia

Hi all, I'm a newbie to the site, however I have suffered the wrath of cluster headaches for 18 years. I am currently going through my 3rd cycle. My past cycles lasted 5 months on average. I just thought I would drop a line and say what a great site this is for those of us that suffer from these brutal,Satanic headaches. I am currently taking Zomig to abort the beasts. It takes about 25 minutes for it to work, but it's better than the alternative. I have given myself Imitrex injections in the past. They work very very well for me, but the cost is incredible (thanks to the ignorant insurance companies). Anyway, thanks for having this site available and good luck to all---I FEEL YOUR PAIN!!!
Doug <cup01@comcast.net>
Brooklyn Park, Mn USA

I have had CH for over 25 yrs last spell a little over 4 yrs ago till 2 wks ago.I move from clev oh to Florida after all this time i thoght it might be the climate LMAO.I dont know if its im older 52 or i just used to handle them better. But this has been rough its 2am Im afraid to go to bed if you are reading this you know why.To all those people that say its a headache take an aspren I wish I could give them a 20 minute tour of duty
Rick <oneyerick@hotmail.com>
seminole, fl USA

Having a Cluster as you all know it is not a joke very painfull but trying to live with it is not easy and can be very tiring god bless you all
Reinaldo Mercado <Reinaldo.Mercado@narcofreedom.com>
yonkers, ny USA

As a fellow CH sufferer and an Imitrex user, I thought it interesting to hear that Imitrex as we know it will no longer be available in a month or so. It is my understanding that it is soon to be approved with Naproxcyn added to it. Hopefully this will be a good thing for us that find it to be a must to function in our daily lives. Check with your Docs. In the mean time, stock up and hope. Four weeks into my current cycle and praying every day for an end. Keep strong!!
Dean <dargabright2@aol.com>
Pt. Charlotte, Fl USA

After 2 weeks of this hell I decided to check out this website. Good stuff here and it helps a lot to know what it is and that there are many other people out there with the same problem. I need to see my doctor as I have not been officially diagnosed yet. Hell, pure hell.
matt durazzo <mattdurazzo@allstate.com>
sunnyvale, ca USA

After a 3 year break, I know that's pretty good, I am back in the hole. I saved up some imitrex vials when I didn't need them but now, I only have 4 left and that won't last long. I only use 2mg at a time to conserve. With no med insurance it's going to be a tough one unless they suddenly go away. My new girlfriend, thinks I don't want to see her and I am making excuses. My other saving grace is a stash of Relpax that I have and some old verapamile. All that stuff makes me feel sick, not romantic anyway. I remember the last time I broke the cycle, I got a shot of some stuff with a huge needle directly into the back of my neck from a Doctor in Palm Beach. I have to find him. Kip
Kip <Kippyburbank@aol.com>
Melbourne, FL USA

I have lived with the demon for 18yrs. This spell is the worst to date. 2 nights ago I suffered from 12am-10am I don't how I made it. I finally meet a C.H. sufferer it was the best night of my life to have somebody who understands. Starting Depakote I pray this works. I'm out of energy. I'm tired.
Gary <Gmajewski@comcast.net>
Plymouth, MI USA

hi i am 41 and have suffered for over 20 yrs,will it ever stop?i realy wish i could die!seems the only way out !
jim <jlf3967@comcast.net>
lowell, ma USA

Bless all of you that contribute to this site,I suffer every spring from cluster headaches. As I type this the 'beast' is subsiding I just ate some aspirin and imitrex is a no-no before work. I am trying to self diagnose my triggers. I think it may be a tree in my yard that emits a yellowish pollen. My clusters start when that thing starts blooming. Does this happen to anyone else? If so let me know, Keith
Keith <keith.rocketdog@gmail.com>
Bonsall, Ca USA

Episodic then chronic. 5 years now . First time on the site, so hope to gain some useful info and share any helpful info.
Andy Vernon <andrew.vernon@atcmail.com>
Charlotte, NC USA

Thank you for this site. I needed to know I'm not alone. I have the BEAST. It started two years ago and wasn't diagonised correctly until March of 2008. My doctor who I consider a jerk right now won't renew my Imitrix tables. He only gave me 9 and this was suppose to last for the 2 to 4 months they last. Hell, they lasted only 10 days and only then because I only used them when it effected my work and I wanted to jump out the window.I would not wish these attaches on my worst enemy but right now I wish DOC had them. Then maybe he would understand. What to do now? Go through Hell until the cycle ends or doctor shop??? THANKS FOR LETTING ME VENT.
Richard L.
Florida USA

Hi, I was diagnosed about 6 years ago as a suffer of cluster headaches following a violent episode in the middle of the night, completely out of the blue that left me thinking i had a brain tumour. Anyway, after a visit to the doctor, he instantly diagnosed cluster headaches, and I've suffered on and off ever since. My problem is that I don't seem to fit in with the theory of having multiple attacks over a period of weeks/months. My attacks seem to last 3-4 days, and i get this about once a month. Also, I now seem to be getting warning signs, where the night before an attach, my temple starts to hurt, the back of my neck becomes really tight and i have a lump on my head that becomes pronounced and sore. As soon as I get the warning signs, I take one of my tablets, and while it does not stop the attack, it reduces the severity. Does anyone else get similar warning signs? Thanks Steve
Steve <stephendeakin1889@yahoo.co.uk>
Manchester, UK

Helllo my name is Joe and I suffer from cluster headaches. I have neen to the hospital so many times over the last couple of years I lost track. The headaches are so bad sometimes I have actually ran my head into the wall trying to knock myself out. I hopr I can find some usfull information or tips on dealing with cluster headaches. Thanks.
Joe sellers <joesellers@uscaonline.com>
Deerfield Beach , Florida USA

Thank you for this site. After many years of suffering, I know I am not alone, I am not losing my mind and it's not just a headache! I am on day 23 of my latest cycle but thanks to all of you, and the research posted here I knew this time around what to get out of my doc - I thank god everyday for Imitrex injections. I do my rounds of walk in clinics just to garner enough to get through with a teeny bit of sanity left in tact. Its amazing how these dominate every moment and every thought during the cycle. Childbirth nor migraines were nothing in comparison. I can only hope that the newer generation of doctors have a better understanding of these and what it takes to live withthis demon day in and day out for the rest of your life because in cycle or not, you wonder with every headache if it's the beginning of another hell on earth episode, in the grand experiment of how much can one human being take. Stay strong everyone and do whatever it takes to get through.
Stephanie <stephanieellis@sympatico.ca>
bowmanville, ON Canada

Hello everyone, my name is Bill R. I live in Euclid Ohio, im 40yr male happy married and 2 great kids. Im a normal person, work in a factory, coach the kids softball, and work on the house when i can. Just like everyone eles except i got part of my life that only a few very close people know about. I got my 1st round of cluster headaches when i was 23. I was living at home with mom still and it came at night, it certainly got my attetion but after a month it just went away so i wrote it off to whatever a young 23 year lifestyle. 3 years later i was engaged with barb, and we were pregent. Here it came again but this time it was brutal, not only at night but during the day as well. So my wife made me follow all the fine lines of our health care system, and finally i was told i had cluster headaches, she gave me a pill and away they went. And it stayed away till 3 more years and each time it comes back now it has plenty of new tricks for me. And everytime it returned i felt less and less powerful as a man. But not anymore!! I have made a choice to live my life between the pain, and when its my turn to suffer i just gear up for battle and try to put on a happy face. This is my something and i learned to accept it. So it has changed my outlook on life. Now i try to cut people some slack because maybe if i do someone will cut me some, one less headache right?. I have never met anyone with cluster headaches, but when i do i think i will just talk and talk and talk. I look forward to the day they find our cure. and also look forward to tommorow. thanks for reading. coach bill
coach bill <wbcrumb@hotmail.com>
euclid, ohio USA

Anyone know why so many people are being affected at the same time, even though they are spread out all over the world. I had not had serious attacks in three years. I always suffer from some symtoms 24-7. Two weeks ago I was actually pain free for almost a week and then...POW! The major episodes returned. I am up to 7-8 a day. Imitex injections and Demerol combined with O2 are the only things keeping me on my feet. The hospital is my next stop! Any other suggestions would be appreciated.
Dean <dargabright2@aol.com>
Pt Charlotte, Fl USA

My first run in with "The Demon" was at 23. I remember it was very painful, and seemed like it was never going to end... It lasted 2 months. Off and on I have had minor run ins that lasted a few days, and weren't as intense as the very first one. It has actually been long enough that I have forgotten how consuming the pain could be, but not long enough for me to forget that I had them. Unfortunately, I have been reminded of just how evil this "Demon" can be. It is now day 10, and the angry beast rears its head slowly to begin yet another day of torture. 4 days ago, out of shear desperation, my fiance rushed me into the hospital. With my left eye swelling shut and tearing uncontrollably, all I could do was press my palm to my eye as hard as I could and wait. I was given oxygen and a shot of Imitrex and sent on my way with a dulled, pulsating pain, and a prescription for 20 Imitrex... The pharmacy only gave me 9... God's little jokes, he's funny. Since the hospital, I have run out of my Imitrex and can't get any till 15 days (Insurance companies... I don't understand them either.). So the beast can have its way on me until then, and all I can do is hope and pray that it ends before that time comes. Thank you for listening... Good luck to you all! Rory
Rory <Reb5k@hotmail.com>
New York, NY USA

It was a night like any other may have began. Sleep was the answer to my thoughts, yet I knew it was somewhere I'd never get...like an unsolvable quest. My mind was working overtime as fear and panic built eventually into frenzy. The thing about the brutish hellfire known as cluster headaches is the anticipation. You can literally feel the attack coming on. First it simmers, then transcends into a pain unequal in my years of existence. This was my night. I could feel this fire "burning" in my brain. First simple like, say a brushfire. But then it scattered through my head taking me over. I tell myself panic will only further fuel this smoldering inferno. I swear I could feel my head pulsating at a rate unsound to say the least. My right eyelid began fluttering intensely and the next thing I remember I could feel the thud of the ground as my face pressed firmly against it. Squirming to the side the way a fish out of water gasps for a source of oxygen I knew now it had begun its "mind-splitting" phase. It almost feels like a dream...well, more of an insane carnival of a nightmare more hellish than anything I've ever seen on the television. Fist clenched I press my head between my mattress and box spring. Knowing full well this will never stop it (we all have our rituals). Upon full arrival to this hellish place of angst and ultimate foreboding, You could melt the plastic from a childhood doll just pressing it to my temple. Then come the "saws". what feels like miniature circular saws carving their way through my every thought, forcing my body to contort into back cracking positions usually reserved for acrobats and circus freaks. My thoughts flash in waves of light, my nose runs until it bleeds. For a minute i reach my pain threshold and pray to God for another way out of this. The pressure continues, I take an imitrex, the intensity fires up for one last burst of immense pain and suffering. Then the pain recedes, my head functions properly again, and I know I've beat this hell freak. But the war is not over...He'll be back and when he does he'll come for me.
Scott Shep.
Schyler, NY USA

hi, had these things for 20 years plus and finally found out about them!!! just been in remission for 4 years and they have come back. good to see i am not a weirdo!!! for me the best cure is to sit up straight, cold enviroment and wait for yawning as that signals the attacks coming to an end!!! i used to live in the uk and have been found by my brother, sitting in snow outside in the dark, breathing deeply and sweating!! he was a bit freaked out. anyway, thanks for the site, very helpful, i am not alone, wahoo!! Ian
ian
new zealand

It's probably unusual for a non-sufferer to be posting a message - but this website is such a valuable resource for both CH sufferers and their partners to better understand the condition. My wife was only yesterday diagnosed with CH. I've been left feeling completely helpless watching her endure excruciating episodic attacks over the last three weeks - not knowing what they were. This website has already helped me enormously better understand what my wife is up against. Dare I say - thank goodness it's not me... I really feel for you guys living with this horrible condition.
Joseph Tabacco <jptabacco@virginbroadband.com>
Melbourne, VIC AUS

Hello gang, I've been suffering CH's for 13 years. I used to get about 4/day (about 1 hours each) for 2 months in the fall. This past fall I didn't get them and thought I might be done with them, but they've now struck this spring with a vengence. It took me 2-3 seasons of suffering to finally find a medicine (50-75 mgs daily of Nortriptyline) that would prevent them. However, I've been taking them for almost 2 weeks now and they are not working anymore!! I agree with the comments--NOBODY but a CH sufferer understands the pain, the absolute agony of being woken up 1/2 hour after falling asleep, or being stricken at work and the complete fatigue of dealing with these!! I have tried evertyhing folks have listed, Zomig, Imitrex, Ergotomine, Propranolol, even hydrocodone, Midrin, Darvocet are no match for the beast! I've tried just about all forms of alternatives as well, Feverfew, essential aromatic oils, Co-Q10, Sinol, etc... I tried oxygen before but didn't have a mask--which I hear is critical, so will try that. I have an appt with a Neurologist tomorrow and am open to anything! Seems like lithium and prednisone may be something that I could try as well, as I haven't tried these. As we all know some things work for some (thankfully) but may not work for the next person and many times its just trying to find something. I remember before I found the Nortriptylene, I almost went on short term disability as I was just about not functioning before and am approaching that again as well. I just hope I find something that will allow me to cope and be productive at work. Any other comments are most appreciated! Dan
Dan <dmcmskari1@msn.com>
Centennial, CO USA

It's good to see this site still around. I've been in remission for 3 years - that is up until this past week. So, I'm scouting new methods. I've actually seen some utube videos with people having clusters. It's very creepy because it's me. Especially the leg twitches and the agony. I usually describe my CH as a demonic gnome running around my head with wire strippers that strip all the myecin from my nerves. Hopefully, I won't be around here for long, but it's comforting to know all you clusterheads still are out there!
Access Denied <Flapperlady@hotmail.com>
USA

I posted twice yesterday, and did alot of reading, this has been the worst run I have had in 28 years. The Doc had me kicked up to 600mg of Topamax,300mg of Wellbutron,and for pain, we started with Tylenol 3, then Demerol, then Morphine and Hydromorphone, and even with these heavy narcs in my system, the pain was still waking me up 20 to 40 minutes after I would try to go to sleep. You know, scream, cry, pace, steaming hot to ice cold shower kind of pain. After reading on this site I contacted my Doc and asked for oxygen, Imitrex, and Lithium. My wife and I got home, we had dinner, then went to bed. Sure enough, half an hour later, Bam! I started with the oxygen for about 5 minutes, then the Imitrex, 2 minutes later Zero pain, the Beast had been driven away. Oh my God what a relief! After 2 weeks of hell during this cycle, my first relief. I slept for 8, yes 8, hours straight. I know it will take the Lithium a little time to reach its therapeutic level but, at least for now I have the club, the wepon, the tool to drive the Beast back into Hell, the Hell that surely spawned him. Thank you to all, that have shared their experiences and providing me the informatiom so I could work with my Doc and gain this resolution. Again Thank You, John.
John <jesdms@aol.com>
Millersport, Oh USA

Had my first CH in Feb. 08 -- cycle lasted 9 days. Prednisone was working. When we tapered down, got to 20 mg. the Beast returned. Went back up on prednisone. Tapered down more slowly and took last pill on March 9th. Felt amazing 3 days later. Then started feeling last week the way I did a few days before CH started. Sure enough yesterday March 19 the Beast returned -- more severe than in Feb. Now on imitrex and oxygen. I am 42 yo female. I don't understand what causes them and the first time they happened around 4:30 am. Yesterday was 5pm. Do you all notice some "signs" a few days before? Thanks for any help! When I tell people about the CH - they say oh yea, i have headaches, I have migraines. Oh maybe it's your glasses, etc. It just irritates me because all I want to do is have someone cut my neck off!!
Kimmie <kimmiev@comcast.net>
Berwyn, PA USA

Good morning again.I posted in here once this AM,but after reading some of the other entries,I thought I would share some of my home remedies.My headaches are left side,I will use the shower massager and work it around the side of my head,cheek,temple,or near the ear,you will find your spot, it can sometimes almost instantly kill the pain in my teeth,thats a big relief for me. For the onset of the beast,I will brew a pot of coffee like 4 tines as strong as normal,a cup of that works pretty well,the caffeine kick and the heat on the teeth,don't know which,but it has worked for me. Another method is exercise, I'll put some weight on a curling bar and do as many reps as I can while running in place. I know, sounds,wierd and like the last thing you want to be doing,but the idea is to get the blood out to your muscels,get them pumped full then there is less blood to be slammin in your brain bucket, it also gets more oxygen into your blood, hey what do you have to lose? I hope some of this may help. All of you hang tough,knowing that I have you band of brothers, and some sisters,is one source of strength for me and we all know that when the Beast is banging on us, we need every resource we can find. Peace John
John <jesdms@aol.com>
Millersport, Oh USA

The "Beast" is back! I have suffered from clusters since 1980,28 years of hell.I'm pretty much a chronic class, maintenance meds and some of my own creative methods for pain control get me through.Then about every two years or so I go into a "Mega-Cycle". I'm lucky enough to be in one right now. It started two weeks ago,in the past,aload of Predinzone, shot in the back of my head and some Stadol to dull the pain a little,crank up the maintenance meds about double the norm,and usually within a week or so the "Mega" begins to return to your run of the mill cluster.You know,bang your head against the wall,the left side of your mouth,all the teeth being drilled with no novicane,someone shoving a hot poker in your temple,the muscle's in your neck and sholder cranked so tight you don't know why they haven't exploded, all the while,the pain is ratchting up more and more.Yea,you know the normal. Well in 28 years the "Beast" has kicked it up another notch. I was a week into this "Mega" run before I could get in to the Doc, the first assault of meds had no effect,and I hadnt slept in a week,got back in to the doc, he tells me to doubble up on my Topamax,but he's going to hit me in the butt with a load of Demorol and I'm going to sleep for at least 12 to 16 hours, cool I say! My wife drives me home, I get comfy in bed and Bam!! Mega cluster brings me out of that bed in about 30 minutes.Oh my God,I'm thinking Doc gave me a butt load of pain killer,what now. You know exactly the desperation I'm feeling. Well it gets better. Went back to the Doc yesterday,he switched me from topamax,to Lithobid,and the best part, Doc hooked me up with Morphine. Cool,finaly,some serious kick butt,no kidding pain killer. Got home, took as prescribed and went to bed, man I havent slept In two weeks, and I STILL have'nt. My desperation and pain are at levels I have never experienced in the 28 years I have been in this battle. I'm getting an oxygen setup today,I've used it before,did'nt have much luck but I'm reachin for anything,anything but lead. Pray for me. Thanks John
John <jesdms@aol.com>
Millersport, Oh USA

Ouch, Arrrgggghhhhhh! Here we go.....
PHB <phblakeman@yahoo.com>
Hamilton, va USA

Episodic, 45, headaches first came on when I was 17. I just started another cycle after 6 years pain free. I am lucky to have widely spaced clusters, with fairly long periods between. Spring is my usual time and my cluster usually last between 4 and 8 weeks.
Jim T.
Sheridan, WY USA

OMG! Episodic for 10-12 years. Even when not in cycle, I live in fear of the beast.
Hal Burgiss <hal@burgiss.net>
Louisville, KY USA

Hi my name is Andrew I am 33 and have been suffering with CH for 16 years.It's nice to know that other people are out there that understand the pain,kip 10 ;-( The message board turned me on to Zomig which actually works for me.I always hated taking Imitrex too many side affects.
Andrew <Scooter379@gmail.com>
Vancouver, BC CANADA

I have been having another episode for the past 12 days. I get the mad dog at @ 1-2 hours after I have gone to bed, but feel the pressure and slight pain from the dog all day long...I suppose so the dog wont let me forget what he has in store for me later tonight. I used to take predinosone 20mg for @ 1 wk and that worked, but this time I called my doctor and he RX more predninosone and to continue verapimil 2x daily. We will see, but I am hopeful! I am now taking Chantix to stop smoking because my doctor believes smoking is the ultimate cause as well as beer drinking. Geez which I could just hang out with a few friends and drink a beer or 8. Maybe the days of beer and smoking need for me to come to an end and perhaps this mean old dog will lie down and die and not ever come back. What do ohter doctors say? Stop smoking? Drinking? Wonder truly what really causes them....triggers them.....they come @ every 2 years with the change of the clock and seasons.....wonder if that is it? Thanks for the website because now I am not alone.... When I tell people they look at me like I am stupid. Then I fear they will look it up on the internet and it will say smokers/drinkers....etc.... Thanks again!
RKF
Indianapolis, In USA

Back in the mid-90s, I would suffer these horrible headaches for about a 2 week period once a year. Luckily, I never got one more than every couple of days during each period....usually at night. And they would only come in the colder months. They usually would last about an hour. Only one time did it go on for a few hours & I finally had to go to the emergency room, the pain was so excruciating. Another time, the cycle lasted over a month. But usually only about 2 weeks at a time. Anyhow, the last time I experienced one was about 6 years ago...UNTIL last night! I thought I was done with these forever. But I guess not. Now I fear I will be getting at least a few more over the next 2 or 3 week period. I'm not looking forward to it. But luckily today, I read up on it & found out I've been doing the wrong thing all those years, by laying down when I got one. I read that that is the worst thing you could do. It only makes the problem worse. I also read that lots of water or coffee & maybe a hot shower or exercise can also help in the first few minutes of getting one. I will have to try these things. And I will definitely have to avoid alcohol for awhile (I was drinking last night when it came on, plus I think the cold I had last week also might have contributed). Anyhow, this horrible pain is by far the worst thing I have ever experienced. When I get one, I'm literally praying for someone to shoot me. During the headache, I would agree to ANYTHING & I mean anything, that will help to take the pain away. If someone broke into my house & threatened to rob me, I think I'd just say go ahead & take everything....just leave me alone right now. Ha! Seriously though, it is a pain that, if you haven't experienced it yourself, you can't imagine how horrendous it is. The first time I got one, I was convinced I must be having an anuerysm. I was convinced it could not be as simple as a "headache." I thought for sure I must be dying. After getting a few more over the next few days, I went to the doctor & found out what it was. Anyhow, once I got the headache last night, it was like the previous 6 years vanished & it felt like I had JUST had one. I had once heard that they usually only attack guys in their late 20s to mid 30s. I'm now 38 & hoping that I will NOT be contiuing to get these for the rest of my life. I just want to say to the people who suffer these headaches far worse than me (by getting them several times a day for months at a time), my heart goes out to you. I hope & pray they finally subside for you. Some of the horror stories I have read here, make me realize that I'm actually lucky that mine aren't as bad as they could be.
Jay <Mucci121369@yahoo.com>
Waterbury, CT USA

hello good to find this site, 1990 was the 1st time for me, i was a young lad of 19, with me pals having a laugh when i started getting a bad headache, didnt think much of it at 1st then 20mins later found myself alone walking the streets thinking this hurts, 40mins later i was on the floor, i took some pain killers and the pain went away, thinking the painkillers done there job, i just got on with me life, that 1st year i must have had 2 or 3, it was'nt untill 2 years later that i deceided to go to the docs, telling him im getting these really bad headaches every day, down one side of my face, crushing me left eye, lasting for an hour or 2, once or twice a day. that when he told me i had cluster headaches, ok i thought, so what the cure. over the next 5 years every febuary/march i get these clusters 1 or 2 a day for 6 to 8 weeks crying like a baby,im alone with this,cant touch my face, worst pain i have every had,over this time the doc give me all types of pain killers, not 1 helped, i gave up all types of pain killers about 8 years ago, the side affects were to much, work as to carry on, family life, 9 to 10 month im ok but it never really leaves me, i talk to them now, like a friend, i know it might sound silly but after 19 years of clusters its like we know each other, its almost a game, just when i think ive won itll kick me and then, kick me when im on the floor. sometmes when im going through a spell i think of people who are getting these worse than me and how are they copping, i dont know these people but you are in me thoughts, i used to think why me, but i now think that maybe by me having these someone else might not, good luck jamie
jamie
london, ENGLAND

i'm back. 5 years ch free. its nice to be back with all my friends.it appears the beast has given me a visit. i had forgotten the lonely pacing up and down the pain of seeing the world through shear and utter agony,please kick in methysergide tabs and kick in quick.it is good to read the website and to know i am back in good company.
Drew MIlls <millsies1@bigpond.com>
Sydney, nsw Australia

Been a few years since I have been breezing thru the site, am a 30 year veteran of clusters and my God in Heaven they are back again. Mine are the 9 pm's this time, a new one for me; they used to let me get a little sleep before having me hit the floor; oh well, guess i've made 'em mad or something. We shall see. Am looking forward to talking to you guys, until later..
Pat <pat_mptrucking@yahoo.com>
Marianna, Fl USA

Hi! I'm Gina and I'm 25yo. I suffer from this horrible headaches since 2000. I have crises every year almost the same time of the year, spring. I have tried everything but only the imigran injections can help me. of course every year about that time , around spring, i take cortisone for precaution reasons
georgia asproudi <serenade_gina1982@yahoo.com>
athens, greece

OMG! I am still trying to find the words here. I have been suffering these headaches for the past 9 years. I heard someone mention CH and thought I'd take a look. I can't believe this evil has a name. I will beg my doctor once more to refer me to a neuro. So many sinusitis, head cold, oh the pain isn't that bad type dignosis. I am so relieved. I can't thank y'all enough. I actually cried when I read some of these testimonials. Finally! Did I say OMG?!
Eric McGaha <e_mcgaha@suddenlink.net>
Lubbock, TX USA

I just stumbled on this site...THANK YOU!!!!! I thought I was the only one with this type of headache. My sister gets migraines, but these are different. They first started about 7 years ago with a throbbing, punching pain in the back of my head just above the neck and shooting through to behind my eye. It would wake me up at approx the same time... around 4:00 am. At first I thought if I moved my head just right, it would go away. then I thought I could sleep through it. HA! Thats a good one! After several miserable days, I kept a decongestant, and a Excedrin Migraine dose by the bed, which made it slightly better, enough that I could get up and want to live! The rest of the day is this fog of pain, right on the edge of coming back, every once in a while a shooting pain to remind me what I have to look forward to the next morning. Then they go away as mysteriously as they arrived. Then when THEY go away, I get the rebound headaches from all the meds I took trying to get through the day. What a joy.
Janet <janbaugher@yahoo.com>
Owosso, MI USA

After suffering for a few years, I have found this site to help me deal with all this pain. I only wish I could speak to a real, living human being that understands the pain, and the reaction my body has to this pain. I am the only woman I know that reacted with tears when her midwife suggested an Epidural while in labor. I suffered years of migrains until I figured out the trigger (citric acid that in just about everything) and I even lived through a kidney infection AND a kidney stone without so much as morphine. But the CL absolutly distroyed me. I can explain this pain to my husband, to all my friends, But until I can meet a fellow sufferer face to face, I don't think I can justify the pain. And I really need to justify this pain.
Mary Hasbrouck <mrstam@verizon.net>
Amherst, MA USA

Been having ch for about 7 yrs.Initial thought toothache.Had it pulled drove dentist bonkers, treated me for dry socket for 14 days.GP diagnosed ch quickly.Verapamil Lithium,Oxygen,and Imitrex inj.Read a little about biofeedback would like a little more help if possible.Is it worth a try?
Floyd Woycheshin Jr. <Floyd.Woy@gmail.com>
Waco, Tx USA

not good at writing or punctuation been suffering for 20years first ten everyday like clockwork last ten certen times of the year had no idea so many people had this shit but glad to see im not theonly one.sure duz suck but i have to be strong for my kids well giong to watch tv and wait for another one to kick my ass for awhile. as we say in hawaii ladaz
uwila <eaglestildeath@aol.com>
henderson, nv USA

I've been struggling with cluster headaches now for about 10 years. First it was earaches, then sinus infections and tmj. I've been sleeping with a mouthpiece for no reason for the last four years to now discover its cluster. To a t. I read how helpless and depressed people are when the demon comes. I know now that I will never be "normal" where I cant have a beer or just hang out or wake up without this in my head. I feel helpless, angry and weak. I don't know what to do anymore. I don't want to continue life like this. And if this isnt going anywhere maybe I should. I never felt like this. To know now what it is and to know by reading all of this that its not leaving me. Why me? Thats the question I see all over here. I've asked myself that for years, what did I do that was so wrong to deserve this pain? What? Helpless. Defeated. Why us? I wish I could take all of your pain with me.
mikek29 <mikek29@hotmail.com>
sussex, wi USA

Hello, Yikes!!! I'm a cluster headache suffer ... for about 5 years. It really sucks and I hate it. I use verapimil as a preventive and imitrex during the events that happen up to 6 times a day when Im in cycle. I used your site to educate myself and it has been a God sned to me. I tried to sign up on the web page but I cant see the code required to become a member. Love to all, David
David
westampton, nj USA

The beast attacked this morning on my way to work.. what a opportunist jerk... luckily I wasn't driving.. only the passenger of this hellish ride... the sun was beating in the window giving the beast insain super strength.. I hid my eye behind my coat and rocked violently to cope with the pain.. my husband, (the driver) said that other motorist kept giving him the finger.. that my pain was obvious, and it must of appeared that he was at fault..(I am sure they weren't actually flipping him off..he only said that trying to lighten the mood) I took the imitrex at the first sign of the episode, and this normally halts the beast.. but somehow the beast found a way in.. and punished me beyond the norm for being a moment to late with the meds. I am now in my office, with only a slight presence of the pain lingering behind my eye. I have to stay functional, I am a working mom.. luckily for me, my attacks are short lived compared to some of you.. lasting only 30 min. to an hour. Imitrex has been my savior, I have become quite efficient at recognizing the signs of the beast and stopping it before it gets an enormous grip on me. I want you all to know that I feel for you.. wish we could all come together and conquer the beast, imagine a large hall with all of us in it, with a symbol of the beast and us all destroying it. (a beast piñata maybe?) we could all have a whack at it.. taking out our aggressions and working together as an army to dominate the monster.. torturing him as he does us. shall we kill him? or just take turns coming back on a daily basis for 4-6 months each year to induce more torture!! Death would be to easy. Let's make the monster suffer! Well it's only a sufferer's ridiculous dream.. maybe the only defense against the insanity of a clusterhead's day.. Thank you to all for your postings.. and for the understanding. I am not insane.. I am a clusterhead of 19 yrs. sending PF vibes to all of you!!
De <me_d_70@yahoo.com>
Mission, tx USA

Hello to all of my brothers and sisters in pain. I'm a chronic ClusterHead sinse I turned 40 in 2002. I have like many of you been through the ringer over this condition of ours. My heart goes out to all of us and thanks from the bottom of my heart for this web site it has changed my life.
David Arnold <sdave1@peoplepc.com>
Conroe , texas USA

I'm in my 8th year now of my Episodic, early year, 3 weekly bout. The CH's Started when I was 24 and no remedy worked until my doc tried me on the Imigran injections a couple of years back, they feel a bit dirty to be fair but at the same time they work a treat, pain goes in about 3mins, sweet! Have 1 to 4 ch's a day for 3 weeks once a year, each with an average KIP scale of 8 which is bad enough but my heart and best wishes go out to all those chronic sufferers!! And the rest of us lucky people as well :) I've found some good tips today, think I'll try Oxygen next.. Good luck ! Pete
Pete <revskipton@hotmail.com>
Farnborough, England

After migraines were left in the dust, I came down with the twice-a-year clusters. As I HATE doctors as much as I HATE narcotics, it was a long time before I got pointed to a neurologist. Insurance, don't you know. But it wasn't until I found support groups for fellow (and female) sufforers that I was really able to get on top of the devil. I have not broken the cycle, but I am not waking up twice a night in uncontrolable pain either. Pain, yes, but not out of control pain. I'd be happy to share my recipe with anyone
mrstam <mrstam@verizon.net>
Amherst, MA USA

just after finding this page all tho i avnt actually been diagonsed with CH it seems ta me i have it. im 17 and for the last 6 mts ive had a constant headache which never goes away went for mri,ct scans came back fine getting fed up with dosc not being able to tell me whats wrong. was glad to come across this site to find ppl that go through the same pain.
treasa
USA

I am a 43 yr old female, been getting ch for 23 yrs. First was chronic and then found the diamomd headache clinic and was episodic for 15 yrs, I'm back to chronic now. I found this site a few years ago when I was at the end of my rope, it helps to know I'm not alone. I've been using imitrex injections the last 2 yrs and hope it doesn't stop working like o2. I keep it with me at all times, getting a cluster in public is the worst! No place to hide. My husband gets mad at me when I have a very bad night, 4+ clusters and then a terrible cluster hangover the next day. I'm very lucky to have a sister that understands this madness. I hope one day we all find relief.
Lynn <lynnweber@allstate.com>
Lincolnshire, IL USA

I am experience my 5th cycle in 10 years, and I am in my 5ht week. The largest dose of Immitrex prescribed by any doctor for me is 100mg, maximum 2 pills daily (maximum recommended dosage). I seem to get 2 daily cluster headaches around 2:00pm and 11:00pm like clockwork. I take one at around 1:30 (usually adding a naproxin 550mg) and 10:30pm cause I can start to feel that devil 'comin. This seems to take 80% of the pain out of the way. I will try the RED BULL thing as well. Blessings to the Sufferers!
Dean Buchholz <dean_buchholz@hotmail.com>
Ottawa, ON Canada

I was diagnosed by an E-N-T with cluster headaches. However, after reading several websites about these headaches, I am unsure of my diagnosis. The thing about cluster headaches that stood out in everything that I read, was that the pain was so intense. Thankfully my headaches are not so intense (maybe between 5 - 7 on the KIP scale), but I do have most of the other symptoms, and the doctor did not suspect anything else. I really do feel for all of you suffering with such severe pain. Is it possible to have cluster headaches without the intense pain? Thanks for any help that can be offered.
Tori
McKinney, TX USA

Wow!!! I'm overwhelmed. For years i've been beggin my doc. And for years he says sinusitus.Mri's,ct scans nothin. This mornin at his usual 2am wake up call i had enough!After the episode i started researching for myself on the internet. Started looking for home remedies for sinus infections and low and behold after 2 more visits from him and sheer will and determination i ended up here.How could i have been so foolish and not took matters in my own hands sooner.. He has shatterd my being once a year for 7yrs. 4 to 6 weeks at a time and i was going about it all wrong. But thanx to all the wonderful clusterheads out there, when he arrives again this mornin and blurs my right eye, i'll have a army of heads and an arsenol of knowledge to help hold my junkyard on my shoulders. You folks have givin me new strength, hope and knowledge. Forever greatful and in my prayers your friend Dan
Dan Elkins <tbonesoco@yahoo.com>
valparaiso, in USA

i always thought i was alone.even the doctors thought i was crazy.i try to explain the pain!!!!!!!!!!!!!!!! its like a brain frezze from icecream 100,000,000 times worse.i would not wish ch on my worst enemy.
mark stewart <fishless63@cox.net>
pensacola, fl USA

I have been having these CH now since 1982...I am at my third week, this episode. For years I suffered tremendously--unbearable pain during these episodes. I tried several medicines with Zero relief. I was finally referred to a Neurologist and diagnosed with CH. He recommeneded the use of Imitrex injections...what a MIRACLE drug. Usually within a minute, the excruciating pain is over...I keep asking myself why did it take so long and after useless medications, x-rays and other procedures. Educating physicians and the public on this insane pain known medications that help is a must and overdue. The symptoms are clear. Rating the pain is easy (worse pain one can imagine). I have my Imitrex sitting on the sink in the downstairs bathroom waiting for me, tonight about 2:30 - 3:00am. The only thing that gets me through my episodes. Thanks for reading.
GJones
OH USA

Great to find this site---someone to share my misery with! After suffering for years with what I and everyone thought was sinus headache, it took an ENT 10 years ago to tell me to go to a Neurologist. Now I'm on my second one(first one gave up on me when I got in toxic condition with ergotamine). I've been in chronic state for last few years, with no remissions over 2 days,except for recent 4 week prednisone treatment(60 mg/day down to 5/day)---no headaches for 21 days! Now I've crashed and back to daily misery. Verapamil no longer works as prophylactic---Neurologist considering lithium or Topomax. My headaches at first diagnosed as migraine without classic auras etc. But they fit almost all cluster symtoms other than duration(mine if un-aborted last sometmes 24 hours)always same location(behind left eyebrow/eye, nasal stuffiness/drippage/same times everyday like clockwork). Even 2 oz. wine or 4 oz. beer will trigger---only trigger I've identified. Imitrex and Amerge worked well for a while, but with greatly diminishing results lately. Excedrine Migraine likewise; but I end up taking an abortive medicine everyday and soon get in rebound. Comments on Topomax and lithium invited. Tried to talk my neurologist into a continual dose of prednisone, but she refuses
James Reed <jdupre@bellsouth.net>
pendleton, sc USA

All I do is read this board and take comfort and knowledge. Thank you all. I can't register because I have IE7 and don't know or have the brainpower to deal with firefox. I have had a daily CH for the past 49 days K8+ if I am not crying all day I am pacing or zoning. I am at my wits end. My nero refuses to return my call but lucky me I get to see his cheerful 25 year old nurse practioner in 11 days. My husband and I are camping out in my PCP office today but doubtful she can help. Topamax 125 mg. no help. Relpax, nothing, Imitrex, nothing. Only thing that helps is narcotics. I do not understand AT ALL why everyone here says they are of no help. My head hurts for a minimum of 3 hours almost always and the meds kick in about 30 to 45 mins after I take them at the least dull the pain so please oh please tell me why the heck would I not absolutly need them. I am so at a loss for understanding here. Will have a tech guy here soon so hopefully I can get firefox downloaded soon and figure out how to register. Any advice please about medication or getting a doctor to return call. Also there are no doctors in my city listed on your site. Thanks all.
Mary Ann Adams <maa57@comcast.net>
VA USA

I am thankful to be at work, knowing I will at least have a couple hours pain free when I came accross this site. Now I am crying in the understanding of the testimonials. I thought I was alone, weak and sick. I have had CH for over 15 years. I wish I could offer something more profound then, I pace the floor, put pressure on my head, pray to god, and am thankful I never had an interest in handguns! Good luck to all. I am in the middle of a bout and will be expecting my hourly 30 minute pace out from the depths of hell later this evening!
Scott Rhodes <rotti55818@aol.com>
Elkton, MD USA

Hi, i am amazed at the amount of people that share this pain! I am in my 23rd day in a row waking up 1 hour after i go to sleep with the pain, my symptoms are much the same with the pain being unbelievable to the point where I am almost in tears. My doctor doesnt care!If anyone wants to share any best practices in reducing the pain then please email. PLEASE PLEASE!
Billy <billy00000hughes@hotmail.com>
Glasgow, Scotland UK

Hello! Good to know there are other people who understand this HELLISH pain! Even my wife doesn't believe that these headaches are this painful. I thought I had a brain tumor or something when this started 2 years ago and woke me from a peaceful nap. That first attack lasted about three months and I had not had them since until a month and a half ago. This time they are even worse.(If that's possible). Anyway, good to have found you!
R. G. Rogers <rgrogers1@hotmail.com>
Spring, Tx USA

Hi. I posted twice since I found this site about 1/2 hour ago. My first bout was 13 years ago and lasted 6 weeks. One a day. They started up again 6 days ago and well, you know. HELL. I praise God for finding you folks, when I tell folks I have cluster headaches they are like oh yeah, I had a bad headache yesterday.... It is all I can do not to laugh. They have no idea what a headache is, do they? Last night my 12 year old son came up to our bedroom (hubby had fallen asleep on couch) my son was running a fever and his throat hurt. I got him settled in and gave him tylenol and not long after that it started. I prayed it would not, but it came anyhow. I had read on an alternative medicine website that melatonin might help and also read that cluster headache sufferers had high histamine levels in their blood, also read that vigorous excercise might help. So, two days ago, I took benadryl during the day and bought 5mg Melatonin which I took right before bed. I went to bed and woke the next morning without incident.I thought I had found magic. Last night was my worst one ever and I cried. I am still gonna do the benadryl thing and melatonin but I ran up and down a flight of stairs last night trying to fight the pain and it did nothing. I did find a little relief towards the end of the bout (mine last about 1/2 -45 minutes) by putting a cold eye mask on my eyes. Read that REDBULL may help and will try that tonight. Anyone out there tried acupuncture? May you sleep undisturbed tonight. Love, Judi
Judi <oceanjudi@yahoo.com>
VA USA

Hi Misty. My first bout with these was 13 years ago and they were on the right side. They recurred 6 days ago and are on my left side.
Judi <oceanjudi@yahoo.com>
USA

I am 49 years old and had my first bout of these monsters about 13 years ago. They returned 6 days ago after a bout with the flu. Last time I got them they lasted about 6 weeks. I had a ctscan and was diagnosed as a cluster headache patient. I remember now exactly how agonizing they are. I will pray for all of my fellow sufferers. God, please have mercy on us. May you have a cluster free life. Peace. Judi
Judi <oceanjudi@yahoo.com>
USA

I never knew how much pain could be associated with a headache. When i saw a doctor he told me i was th eyoungest male with cluster headaches..i'm only 25 and i can't imagine living with this disease for life!..i was put in steroids twice..but only as a quick fix!.i was wondering if anyone had any home made remedies to help. i really do feel NOW for anyone who experiences this pain. and for those family members that feel totally helpess..your truly are angels.. my parents and friends always feel bad. and i in turn feel the same way when they ask if they cold do anything all i could do is respond in ine word answers..i'm just looking for advice from more "experience" members of clusterheads!
joseph <silva7740@hotmail.com>
stratford, ct USA

thank you so much for a 'human'site...it really comforts me to know that I am not alone out here and that such intensity of pain makes others re-act as I do. Non-sufferers around me have learnt to leave me alone during an attack but cannot understand that I must walk and groan (dance and sing) during an attack. I really wouldnt wish this pain on my worst enemy! The kick in the butt is that I never know when the episodes will begin and that the are sleep induced so I sleep for 2 hours only to be woken with excrutiating pain and so Im reluctant to sleep at all! And do any of you know how long your 'episode'will last?? I dont-it's been 10 days so far. What a kick in the head. Anyway folks enough. Thank you all for giving me a little comfort = keep up the good work
michael cohen <fayum@hotmail.com>
nicosia, cyprus

I suffer from cluster headaches which in turn send me into a migraine that can last from 3 days to the longest I had was 20 days and I was hospitalized. Every day I wake up pain free is a blessing. Thank you for making this website available. I find it very helpful. Here's to Pain Free Days ahead!!
Lori <loripotrzuski@verizon.net>
NJ USA

thank you for posting my entry yesterday. strangest thing happened this morning the headache is on the opposite side . runny knows feels like my eye was going to pop out . it only lasted about a half hour. has this ever happened to anyone else. it is the first time it has switched sides.
ginny <misty4923@aol.com>
mercerville, nj USA

I am so happy to find this site. I have not been diagnosed with clusters . they seem to think because clusters usually effect males that because i am a women that mine aren't clusters . i wish i could make them understand that they are not migraines. i have kept journals and there is no rhyme or reason. they come out of nowhere last from 1 to 6 months then go away as fast they come. the pain increases to a excruiciating level then slowly fades. i always wake up with it . it is always on the right side behind my eye. i don't think i have the droopy eye but i do have the runny nose and i seem to get incredibly hot almost like hot flashes. the back of my head is always sore and tender if i lean back on my head i get shooting pains. the nausea is incredible and it is impossible to sleep . sleeping seems to make it worse. i hate going to sleep. and pain medicine doesn't help. it is already a full blown headache when i wake up. right now they want me to start on a antiderpressant and anti nausea medication. my problem with that is how do i know when to stop taking it. how will i know if the headaches went away by theirselves or if it is the medication. it is strange i never thought about the shadows until i read it on this site . now i know what i am experiencing anyway it is good to know that others understand. i have had 3 children, gallbladder attacks and surgery and kidney stones nothing compares to this pain. today seems better but i never know when it is going to happen again.
ginny <misty4923@aol.com>
mercerville, nj USA

Hi, I live in England again where I was born, although my cluster headaches were diagnosed some 20 years ago by a neurologist in Vancouver, B.C. Canada, where I was living at the time. I am an episodic sufferer with attacks coming about every 15 months and lasting between 2 weeks and 4 months. I thought that the length of cluster was decreasing as I got older, but last year was one of the worst ever and it seems that I could not shift the devil for months, I was afraid I was going to become a chronic sufferer. Thankfully I did not (apologies to those of you who are chronic sufferers, you have my sincere sympathy and admiration for doing your very best in dealing with that.) I am now in my cluster phase and feeling dreadful, I am a self employed teacher in adult education and have to be there for my classes regardless of the state I am in. I try to medicate about half an hour before the headache is due to start, this is a gamble but works well enough that I can get through most of the time. I just wish I knew how to cope when I have taken the permitted amount of medication during the day and the headache comes back yet again...sadly I often get 3 or 4 each day. If anyone else is in the position where they have to work while the headache is in progress, I would love to hear how they cope. With the best of wishes to everyone, John
John Clements <jbc7745@hotmail.co.uk>
Princes Risborough, UK

suffering from clusters and feeling all alone the house of pain has become my second home!
Apple <Pink.Blossom@Tiscali.Co.Uk>
Leicester, England

in my fourth week of the bastards comin 4 x aday, and can only take nthe injections twice a da y , screwed, started havin them when i was 9, back in t.o. havent had about in 4 years and now there back big time, i feel for you all and hope the best fo you, i feel a cloud and no more imetrex so im offf, thanks for letting me vent
chaad nelson <chadnelsoninvan@hotmail.com>
bby, b.c canada

I happened upon this website a week or so ago when I found myself entering into another cycle. I have been having episodes for approx 20 years (my God....has it been that long !!) I usually have one cycle per year that lasts around two months, with 1 - 2 episodes per day. I have never met anyone personally who suffers from this type of headache, so this site is a godsend to me. Its so funny, the other day I felt myself getting one (I'm new to the language of this site, but I guess I would describe myself as 6-7 on the Kip scale) and a friend offered me an Advil. If I wasn't so miserable, I would have roared laughing. Of course, there are plenty of migrane sufferers out there, but these things are different. I'm still exploring the site, but I do know I now have lots of things I want to talk to my doctor about.... he's never suggested Oxygen or Imitrex and that seems like the most common recommendation. I take the dose pack (6 days) of Prednisone at the beginning of a cycle and then Maxalt at onset of a headache...sometimes it works, sometimes it doesn't. But anyway, already, thanks to your site, I have found a minor miracle...and its spelled R-E-D B-U-L-L....amazing how effective thats been for me this past week !! Anyway, thanks again for this site and the great info it contains. Its nice to know there are people out there who really "get it"
Jane <janemcremx@aol.com>
Oak Park, IL USA

hello to you all. i do not suffer from this dreadful dreadful beast. but i was a full time carer for my husband for 9yrs who did, he had chronic clusters for almost 24hrs a day for those 9yrs. to watch someone you love suffer is torture, we lived in total darkness for those 9yrs, he ended up virtually bed ridden addicted to morphine, pethadine to name but a few the poor poor soul. all i could do for him was to be there sitting quietly, crying for him at times and with him at times, and fighting for treatment and for a little understanding from some of the medical doctors who just dont understand the meaning of chronic cluster headaches, one called my husband a dirty junkie who just wanted the morphine etc to feel dozy and cozy in bed. sadly my husband took his own life in 2002 he just could not take it any more. do i blame him not at all, did he commit a selfish act i dont think so. he was and is the bravest man i know. a tortured soul on this earth. just want you people to know my heart goes out to you and carers alike. i still get flash backs to those awful nights the screaming of help me god help me the head banging and the begging for me to get him help and the feeling of being absolutely helpless. i hope you all receive pfds soon.
lizzie <cutex@tiscali.co.uk>
lincolnshire, uk

Hi I'm a 28yo female who has been dealing with cluster headaches for 13 years. Thankfully mine only come in episodes. It's been 23 months since the last onset of these horrible monsters. I am absolutely going crazy. My boyfriend thought I was nuts on friday night when he saw me rocking back and forth and pulling my hair out. We meet right after the last episode. Although I've been telling him about the headaches, he just doesn't understand. People who have never had them don't understand. He doesn't get that I feel like i could bang my head into a brick wall if it would just stop the pain. I keep thinking that time will make them better and it does to some degree. There are people out there that get them way more often than I. It's just getting through the days that hurts so much. Thanks for reading. Janine
Janine <hatton910@comcast.net>
michigan city, In USA

I am a cluster headache sufferer, I am going on week three on this new episode of clusters. I was having them reoccur every two years right around new years day or a couple days later. Well it was three years this Jan. 1st since my last cycle and to tell you the truth I was hoping that maybe I had finally reached the finale. But on January 5th my nightmare returned. I have been lucky compared to some that suffer, my cycle usually lasts around 4 weeks and the longest headache lasts not much more than an hour, but usually they average only 20 to 30 minutes. I will pray for you all that suffer, especially for those who's episodes last longer and more painfully and frequently. I try to think of what the common denominator for us cluster sufferers is but I have too many theories, like I took drugs as a teenager, my sex is male but I tend to think more like a woman in many areas, so do I have too much estrogen, am I having a testosterone attack to make up. I can't answer these questions but I am willing to work in a case study with doctors if they are looking for volunteers. I wonder how long has this dreadful thing been around. Was it around for eons and no one knew how to look at it or what? I will be going home from work now, it is 10:42 pm and I fearfully wait for the sleep to hit because it won't be long after that the lightning in my brain will ride through my veins in my head. My email is bkuszak@hotmail.com if anyone wants to talk or ask questions, or give advice. GOD Bless you unfortunate like me.
Bernard Kuszak <bkuszak@hotmail.com>
Rose Hill, KS USA

i'm in week #3 of my cluster episodes. they last all day at about 3 or 4 on kip and then creschendo in the evening around 7 or 8. it's been years since my last episodes and happened upon this website to see if there have been any medical updates. this site is a God-send! todays episode has left me physically spent and emotionally unstable while slowly improving. i'm very happy to see that there is a place to go where there are people who understand what i'm going through. just wanted to say, "thanks!"
John <da-fuzz@sbcglobal.net>
st. louis, mo USA

My husband has cluster headaches, he had them in 1997 for about 3 years straight, then had been pain free until November 2007, thank god for the imitrex injections. It is wonderful to be able to read the comments from other suffers, he knows he is not alone. We live in a small town so we have to travel about 4 hours to a neuorologist. He tried lithium for over two weeks and had no relief. His doc now prescribed ritilan and he takes predisone 10mg. once a day, since taking the predisone he hasn't had a major headache. So how do you know which medicine will stop the headaches, if you are on more than one. Thanks for listening
Maxine <maxinelieber@yahoo.com>
Gillette, WY USA

I posted my suggestion on a medication for CH a few days ago and I failed to leave my E Mail Add. Sorry. But I have been a CH sufferer for many years. Had 5 teath pulled because the dentist thought that was the problem. It wasnt. I did finaly find a med. that realy works after $1000.00's spent on meds. that didnt work. Its called Gabapentin. Go to the Doc and get an R/X and try it.
David <daviddwimmer@sbcglobal.net>
west bend, wi USA

Thanks for being there. I just started latest episode. I get them every other year and they last 10-12 weeks. I get one or two per night from 2-3 hours. Reading the other comments is like looking in the mirror. Is there any pain reliever that works the best? My neurologist does not understand. Thanks again, Mark
Mark Schonack <markschonack@dissco.net>
Aurora, CO USA

I am a long time sufferer and I used to be a regular to this site. I have been cycling up the past few months and since I couldn't sign in to the member site (computer problems) , I decided to check out the guest site. From my reading of most of your posts I have not seen anyone mention oxygen therapy. This abortive measure is effective in stopping most attacks within 15 to 20 minutes of onslaught for 80% of sufferers. It has been a godsend to me. You must have an understanding DR. who will prescribe it at 10 to 12 LPM of pure oxygen. It is covered under most medical plans and in my case the tanks are delivred directly to my house. If you haven't tried this please do as it can be the difference between living with the pain or managing it. Please feel free to contact me with any questions and I hope for Pain Free Day's for all. David
David <davidj35@aol.com>
LaGrangeville, NY USA

my constant companions are terror and agony. I live each paranoid moment in a sureal timeline that follows no one elses. Anticipating when he will knock. knowing he will knock....and likely keep knocking...no matter how many times I answer the door he continues to knock. If I sleep he wakes me angrier than ever, how dare I sleep. dear jusus my lord and saviour...please save me...
scott wehr <sowehrd@aol.com>
mounds view , mn USA

I suffered Cluster Headache (Diagnosed by a Neurologist) from childhood until 7 years ago they stopped coming. I used to take all kinds of pain killers until the arrival of Imagran which stopped the pain. I could talk for hours about my Headaches but i have been meaning to say this for a long time. I had bad teeth as a child and a a lot of Dental work including many silver fillings. I developed a fear of Dentists over the years and never had any dental work done so as the years went by bit by bit my teeth rotted and the fillings fell out and I think that about the time that I did not have any more silver in my mouth the Headaches stopped. This may not have anything to do with it but I otherwise have no idea why I had headaches (I used to call them eye aches )all my life until age 47 and did not have one from that time. I still carry Imagran with me but the fear is now very distant and I consider myself very lucky to have been spared from this horrible headache. Sincerly Tom Marshall Melbourne Australia.
Tom Marshall <tomarshall@optusnet.com.au>
Melbourne, Vic Australia

I'm dancing again after a 3 year stop. :-) Not so bad hum? Thank you all for this fantastic place.
Jorge Oliveira <jorgeoliveira@myway.co>
Lisboa, Portugal

I have been a cluster suferer for over 25 years. I finaly found something that works and works fast and very well. A medication called Gabapentin.I have tryed everything under the sun and this med. realy works. You have to get an R/X from your doctor but it is worth it. Anyone that suffers from clusters should realy try this medication.
David
west bend, wi USA

I hate the efn headaches!!!! I hate the person I have beome because of them. The sad part is I don't get them, my husband does!!!! I just EFN HATE them.
johnswife <themrs916@yahoo.com>
pekin, il USA

My husband is not alone!!!He would be typing this , but had an episode at 3a.m. and it wiped him out. Thank you thank you thank you for this site!
johnswife <themrs916@yahoo.com>
pekin , il USA

I thank you for this site. it is SO nice that we are not alone thank you thank you thank you
johnswife <themrs916@yahoo.com>
pekin, il USA

Hello all, This is my 5th severe bout with these clusters and I'm really not feeling along anymore. I was on a plane going to California a few weeks ago and fell asleep and was awaken with a cluster and scared several people on the plane when I woke and said "let me up, I got to get up" it was frightening for them they thought I was going to open the door b/c of the way I tried to get to my bag. Ive been taking Goody headache powder, robaxin 1500mg and 12.5mg of benadryl before going to bed each night. I just refuse to go to the dr. for them to put me back on the neurontin, $112 and stadol b/c it didnt really work at all it just gave me another bill. The stadol inhaler was $ 103.00 by itself and I felt worst with that medication after then I did when the cluster ended. This about my 4th week of going through it. Believe me I feel the soreness of my forehead and around my eye in the morning. But when I dont take anything before I go to bed that 3:00 am wake up feeling like someone shot you in the head and the bullet is trying to come out of your left eye but got launched between the muscle and if you could just pull that eye out the pressure would stop and the pain would end. I'm a registered nurse and having to get up at 5:00 after a cluster is really hard. But I pray before I go to bed that the Lord will supply all my need according to his will. Like Paul ask the Lord to remove the thorn from his flesh and he told him his grace was sufficient. It only made me understand others when they are seeking help for pain no one else understand. I keep saying when my season comes the pain will end again. I'm just waiting. For now I will continue to take the Goody headache powder, 1 1/2 Robaxin and my 12.5 of benadryl which the pain is not as excruating maybe it take pain from a scale of 15/10 down to 5/10. I encouraged you to pray and hold on it's only for a season. The dr. said a lot of people commit suicide from these headaches, but I told him you don't really know me my Jesus will handled it in time.
Cherita <ckennedy@uabmc.edu>
Leeds, Al USA

Hello, I just found this site. I have suffered from migraine headaches for several years until last year. Last year the cluster headaches started. I rarely get a migraine anymore, now I would take the migraine over the cluster any day!! At least I could sleep when I had migraines. Now I get cluster headaches every other day for several hours. I just want to die! I'm even on depression medication (cymbalta) to keep me from ending my life. I have tried every kind of preventative including verapamil only to be dissapointed. On Verapamil I got the same headache every afternoon. The cymbalta seems to help with my mood and dealing with the pain. I am seeing a neurologist who refuses to give me pain medications (such as immitrex) because he is convinced every pain med will cause "rebound headaches" and he wants to get rid of the headaches by using prevantatives. I'm now asking for a second opinion. My CH work like this: sudden pain on the right side leading down to my jaw, can't see out of my right eye, eye waters, nose leaks, nausea and dizzyness, can't sleep, can't eat, can't concentrate, just want to stab my eye or cut my entire head off to relieve the pain. Icy hot on my head seems to help, also a temple cream called mind repair by earth therapeudics. I have never had a break from my headaces, no remission, no help. My only relief is to read that there are other people out there who understand.
Amy Wees <acnwgirl@yahoo.com>
Sumter, SC USA

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