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Below are the guestbook entries from July-September 2004. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main Guestbook Hi Everyone. I am 41 years old and have been suffering from these terrible headaches for about 5 years so far. Finally, my Doc is sending me to a neuro to see if what I am describing to her are cluster headaches. After reading all of the info from all of you, I am certain that CA are what I am suffering from. Thank you all for the info and I love the message board too. I'm sure I will be in touch often to see how everyone is! Hang in there guys!Phyllis <ptannie63@sympatico.ca> Hamilton, Ontario Canada Thursday, September 30, 2004 at 22:05:36 (EDT)
Great site for CH sufferers. Here's my story. CH started when I was just getting out of college. Usually cycled every 13-14 months, lasting about 10 (long)weeks. Headache usually every night 8-9 pm lasting 45 minutes to 1 hour.
Like so many, tried all the meds, many different docs without much help. Maxalt is one of the few drugs that seemed to work, but have to catch the CH early. After a particularly hard cycle one year(drugs had really worn me out) I decided to try Accupuncture. It has worked better than anything I've tried. Two treatments is usually enough to break up my cycle. The cycle has also been changed to about 24-25 months completely pain free. According to Chinese medicine, the stomach, gall bladder and liver are related to the headaches as well as the Hypothalmus gland. The therapist concentrates on those points and it has worked for me. I'm not sure if it will work for any readers but it may be worth a try. I'd be glad to respond to any questions as I know this is unorthodox.
Mark
Hello, first entry, 20 yrs suffering, 41 now wish I could say something to help. matt pot doesn't help, CH's kill a good buzz. thought about LSD at least I might see the beast while he attacks. new cycle went 2 yrs free. tried everything little help. O2 just taught me to consentrate on breathing, seems to help. sucking O2 every hour just seemed rediculus at my age. I have long painful story Dr after Dr, med after med, nose surgery, teeth pulled, the beast play's on. want to know? right handers, right side. left handers, left side? stronger side have something to do with it? sorry you guy's have to suffer with me. maybe if we bang our heads together we can dround out the devil's song. talk soon he's back.
I’m 35 and been married for 11 years and have a two year old son Ian. I’m currently a unemployed systems administrator (Windows/Unix). I’ve suffered from SUNCT syndrome since I was about eight years old. A few years ago what I think was chronic paroxysmal hemicrania started kicking in. (Never diagnosed). 5 Months ago the clusters started and then quickly ramped up to 5-7 attacks a day with shadows on and of all day. First doctor was a joke. The Neuro I have is wonderful and set me up with what I call the generic treatment program. Verapamil/Prendisone taper. O2 and Trex shots. I’m only on my second week of treatment but the attacks have come down to 2-4 a day now and I can now abort most with O2 or a shot. Just waiting for the cycle to break.
I am a 57-year old lawyer who has suffered from CH since the age of 15. For over 35 years my attacks have come in the fall and the early spring at season change. They last for two to three months and follow the crescendo pattern described on this site. As I've gotten older, the periods of remission have lengthened, but the episodes still come. I've only recently started one after two-and-a-half years of peace. Like most of you in the middle of episodes, I live my days dreading the clock, knowing the headaches will never be late and knowing that my life will be total hell at least until Thanksgiving. I discovered your website almost by accident when I started shopping online for Imitrex since the price of the drug has doubled since my last attack. (Glaxo must know that the pain is so excrutiating we will pay almost anything to make it stop.) When I found your site and read the section on "cluster traits," I must admit I started to cry. I have never known anyone else who also suffered from CH, and doctors and friends so often make you feel like you're making it up. ("Only men have CH." "It can't possibly hurt that bad." "You need to quit working so hard.") Your description was ME--right down to the comparison to childbirth. Hats' off to whoever formed this site. There is scarecely anything better than knowing you are not alone.
I'm writing to say thank god and you for this site. My boyfriend suffers from cluster headaches. I didn't know where else to turn. Reading all the testimonies have really helped. Thanks again. Cindy
Your site has given me relief you can't imagine. My husband has been diagnosed with CA in the last three days. The days we spent in the ER and at the DR office have been unbearable. I don't know how to help him. In 10 years I have seen him cry two times, when our daughter was born prematurely and one time I caught him in the bathroom when his aunt had died. During the last two weeks I have seen my husband change into someone I hardly recognize. Dropping to his knees as he holds my legs crying and begging for God to give him mercy, I just don't know what to do. The hospital gave him temporary relief with pain medication, then on to the doctor who has given a non-working medicine (zomig) anyone heard of that? The only other treatment that I could find that wasn't such a big risk is oxygen. Anyone tried that? I love my husband dearly and I fear for his life daily, simpy because he keeps threating to take it if the headache will not subside. Please help me desperate wife in VA fluffietiffers@aol.com
My husband suffers with ch. He was diagnoised in June of this year. He has benn on so many different meds, but nothing has helped. I have gotten a lot of good suggestions from this website. Thank You
hello, my name is john.i've been diagonosed with ch's for 9 yrs.suffered for about 11 yrs.i'm 45 yrs old.i had my first relatively pain free period of 2 yrs until about 2 weeks ago.they're back with a vengeance.2 a day now when i only used to have one.they used to be a wake you up kind and now alot during my awake periods.i had success with lithium for a few years but developed kidney disease.doctors said no side effect but i'm not convinced.was on verapamil and that seemed to work some for several years,but possibly developed some side effects so am trying noravasc.have had some success, but declining now with imitrex nasal spray and better relief with imitrex injections.kfirst visited this site 2 days ago.i've felt frustration and worse not having anyone that really understands what i'm going through or what i'm even talking about.so i am looking for your thoughts about your experiences to get me through mine.
Had a cluster headake attack for six months, had the scan and everything.
A few years earlier I had had kidney stones and that was just as painfull - just a different part of the body.
I am two years free now - it just disapeared.
What helped me get through the bad times was a Natural Sea water nasal spray (French make) - pure water.
I did not want to take pills as I felt the cause and effect was not fully understood
Hi, Having been to the Doctors 5 times in the last three weeks i have finally been diagnosed with CH, it was a revelation, for years i thought my headaches had been linked to some seasonal fluctuation in pressure, i have been to see the Doctor on many occasions only for the headaches to stop, sometimes for a year sometimes for two, but it always worried me that my pain was always on the left side of my head, with the feeling that my eye could pop at any moment, so although i am dismayed to find out that i have CH, to finally find out what has been going on for years is utter relief.
At the begining of this onset i had a lump come up on the right hand side of my neck, has anybody else had this symptom.
Hello all....would you ever guess that my doctor at the leading headache clinics here where i live said..." you have a very painful problem, but you will just have to live with it"...he refused to prescribe any meds to me, never mind my droopy ,red watering right eye as an observable symptom of cluster headaches!.........
I would like to share my experience to many of those who suffer Cluster Headache.
One day I found a message reporting on the 100% Noni juice in my personal webpage posting information about I would like to share my experience to many of those who suffer Cluster Headache. The sender of the information found a substantial relief from the severe pain of Cluster Headache within a month by drinking the 100% Noni juice. At first, I could hardly believe the report. For the past 30 years, I have tried oxygen, sumatriptan, dihydroergotamine, nasal lidocaine, hyperbaric oxygen, steroid treatments, and quite a number of treatments by Oriental Medicine. Therefore, it was totally unbelievable for me that a simple juice would work for the pain so dramatically.
"Noni" is a plant. It's a kind of herb, academically named Morinda cirifolia, and is also known as "Indian mulberry"; "Nonu" in Tonga and Samoa; "Nono" in Tahiti: "Noni" in Hawaii; and "Kura" in Fiji. It is known and sold in Japan as well now in the form of either juice or oral supplement.
Having a suspicion about its' effectiveness, I bought the 100% Noni juice at the natural food store and tried it. The term of my Cluster Headache usually lasts 2 1/2 months, and it has only been 1 1/2 months now since it had started. Another word, I am in the middle of the suffering term. I found its' surprising avail against the pain at once. It has been only a few days since I started to drink Noni, and I don't mean that the pain has totally gone away. Suppose, for instance, the maximum pain is scale 10, the pain after started to drink Noni was minimized to scale 1 to 3. I would say that Noni worked well to relief my Cluster Headache.
My family tells me that my Cluster Headache term happened to be shorter than usual, and the reduction of the pain is because it's the end of the term. There is a fact, however, that the lower level of pain still remains. The term is not over. Frankly speaking, I have a fear that the weakened pain may become stronger by any time, but I have managed to relieve most of the seizures so far. I have been drinking approximately 80 mil of 100% Noni juice several times a day. It seems more effective when taken on an empty stomach. Please remember that it is only juice, yet made out of medicinal plant. Be sure to make a judgment at your own risk.
I have nothing to do with Noni juice sales company nor its' producer LOL!
I am just a woman who has been suffering the Cluster Headache for as long as 30 years, and wishing that Noni juice will be a relief to many fellow sufferers as well.
Almost 4 years.....I thought I was in the clear. DAM IT. They started when I was 14 (39 now) and have gotten further and further apart although the clusters last longer each time!( WOOHOO)......last on this site about 4 years ago...looking for anything new in way of info..........Here we go again.
hi ,m,32,ch sufferer for 10 years ,tried all the stuff ,3 weeks now with severe ch,this site brought tears to my eyes today ,finally a group that feels my pain,i too suffer from the pain ,frustration and lack of help from the medical community regarding this sick,brutal,condition that doctors are baffled by and doctors dont know how to
treat, anyone that has ch,i pray for relief for all of you,i feel your agony,nausea,frustration,ps if any1 has any herbal suugestions ,e mail me at darpam@telus.net,has any 1 tried botox injections ? thats my next trial,i just got off of 2 weeks of dexa methazone/decadron and i just gained 15 lbs and it did jack!now i am so exhausted i got no fight left,getting attacks every 5-6 hrs with only 3 hrs relief between imitrex pills,and the doctor has her hands up not knowing what to do,any suggestions from any 1 would be helpfull ,thx clstrfkd
im 29 years old and im stuck in iraq with the BEAST. water doesnt work, midrin doesnt work and the mds here REALLY dont have a clue. i read this site and i have to say im glad im not alone but wish there wasnt any site at all! ive been getting hit everyday at different times theres no scheldule anymore and im lost. i know all any of us want is for them to go away but is there ANYTHING i can do to get me through the next 6 months? matt youre on to something but thats not an option for me right now. please any help..
Hello, I'm currently 40 years old and have been suffering from cluster migraines for about 9 years. Like a lot of folks I have tried just about everything (Zomeg, oxygen, Imitrex prednisone,propranolol, etc) and nothing has seemed to help the pain. My attacks occur seasonally in the Fall (from September to December) I get about 4-6 per day (about 1 hr in duration each) and the cycle lasts about 10-12 weeks once they start. I finally found a drug that worked!! My doctor prescribed Nortriptyline (20 mgs and I take 3 pills in the evening). This does NOT take the pain away once the headache starts but I take it preventatively. It takes about 3-5 days to 'kick-in' but once it does I don't really get any attacks!! This year, I thought perhaps that I was free of them since I did not get any headaches the previous 2 seasons, however, this year they have come back with a vengence, and now even the Nortriptyline doesn't seem to be working. I'm really worried why thats the case, I'm headed to the doctor tomorrow. I'm wondering if anyone else has this experience? I'm very worried how I'll be able to carry on with work if I don't find something that either prevents them or kills the pain. I also used to take Cayenne pepper pills that used to work before I found the Nortriptyline but those aren't working either. I've read the water area and tried this either, does anybody have any other suggestions? God Bless you all you have another kindred spirit who knows the PAIN we all feel...
well ive read through some of this sight and some of the postings. I've passed it on to family and friends to try to help them understand my husbands CH, most think their migraines and try to tell him what migraine medicine they use. My husband chuck and i have been married 2 years this past August, and hes had these headaches seasonally( i call them that anyway) we only found out last year what they were. I'd like to pass on some things that help him out with his attacks........ definately the lack of alcohol helps, also apple cider vinegar(pills or liquid)it sounds odd but theres something in them that helped him thru last years late winter early spring attacks. Also, if i make him walk as fast as i can get him to walk it makes him breath harder and faster that seems to help, steroids also help him they shorten the length of the attacks..... These attacks are horrible as im sure you all know and bein the spouse of someone with them is agony because we can't help theres nothing we can do but watch them suffer. And after reading some of the postings i can tell you all know that. Right now we have no health insurance which doesnt help matters at all. My husband doesnt like the computer much so i find all the info i can and pass it on to him and let him know of any and all remedies i hear or read. As i've sat here readin this sight my husband has had another attack and i have to say it was one of the worse i've ever seen him have. His usually last 30- 45 minutes and he's had as many as 5 in a day. Sometimes they "linger" as he says... he knows one is coming because his neck will start to hurt thats where all his start then move to the left side of his face... his eyes and nose water ... he salivates... pretty much everything i've seen written in the message board happens to him. It's definately hard watching it. I'm estactic about this sight tho it definately helps to talk to others who know how it really is.
after ready some postings-i know i am one of the lucky ones-my eposodic headaches are no where as severe or longlasting as some-the only bright spot i have seen is that imatrex and some other therapies are affective-for me,a lot of maxwell house coffee and 400mg of advil gelcaps at the onset have been a godsend and if this only helps one person -i hope many more- i would be very thankful-the beast has played a small role in my life from approx 13 years till 46 at present-and my heart goes out to those that have not yet found relief or able to control the pain-have faith one day you will find the answer through sharing and love on sites such as this-i'm so glad i found you and hope you ALL get well-thankyou for caring
Hi,
I've seen your website, read plenty of stories and it gave me shivers down my spine the whole time. Trying to explain to others what you are going through allways proves to be difficult. I don't know if it's relief or happiness or what sensation I get when others can describe the pain I am going through when 'it' is back. Actually the mere existence of this website helps, at least other people know the sheer violence of an attack. Knowing I am not alone is a relief but also a pity, because I envy those who never felt this agony. I am 25 and my first attacks began around 19-20. My usual treatment is taking 2 or more strong painkillers, which don't really ease the pain but the drugs can make you so mellow it is easier to fall asleep. I used to think sleeping was the only remedy, untill recently I started getting attacks while being asleep. Waking up to take painkillers on an empty stomach can do strange things to your body. Also the fact that I cannot grunt and cry and scream loudly, wouldn't want to wake up the neighbours and people in my house. I went to a specialist before and fortunately she diagnosed me correctly. I received samples of Imitrex but those really didn't do the trick. Thanks to the correct diagnose I knew what I had, so now I've found this website. I'll read it from A to Z, trying plenty methods described, hoping for relief. I thank you all for your submissions and stories, they help. Maybe one day, by joining forces, we can drive out this devil. Many greets & support ! Sander
I started to get CH when I was about 13/14. I remember being in middle school and going to the nurses office at least once a week. No one believed me that I had a migrane. That really hurt because I'm not one to lie. Finally when I was 16, my dad took me to the hospital after I had a bad attack. At first the doctor thought I had a brain tumor because I have an enlarged cell in my head. Thank God I didn't have a tumor too. Later I found out I have CH. I am 22 now, and its getting worse. Its too the point where I can't eat cheese, go to the park in the morning, Blacklights, stroblights set them off, certain smells, cig.s, liquor, loud noises, the sun, even laughing too hard, exercise sometimes sets them off. There's too many too list. I feel like I can't do anything anymore. I've noticed alot of people don't know what to do when I have an attack. My best friend's- I hate to see the look on their faces. They know they can't do anything for me, but be there. It hurt growing up, because people don't understand the pain people with CH are going through. My stepmom was one of them. She always told me to quit crying, that it wasn't that bad. Everytime I come on here to read what everyone else wrote I start crying. For them for me..
I actually had a migrane today. It's going away finally. I hate when people see me like that, because I have been labeled as a "strong" person. I went through alot in my life, enough that I want to write a book, someday. I don't like when people see me banging my head on the wall, crying, popping pills, just completly going insane. Once when I was 17, I did try suicide. I had CH pretty bad at that point, my boyfriend had died a year before, I was having all sorts of problems with my body, plus I was being abused in more ways than one. I couldn't take it. It was pure luck that all that happened was I ended passing out for an entire day. (I tried to overdose). I was dizzy for the next month, because of all the pills I took. I'll never try that agian. Life's too precious.
I hope one day someone will find a cure for CH. Untill then I plan to StayStrong. I hope everyone else will too.
Hi guys. I never really knew there was anyone else out there. I am 43 and have gotten CH since I was 15. I got turned onto o2 by my father-in-law 17 years ago. (Believe it or not he gets them too!) Good news is that he is 78 and grew out of them about 10 years ago!!! I Started Imitrex my last series three years ago, and it worked great at 5mgs nasal. I'm in my new series since July 4, and the Imitrex is faultering. I'm upping the dosage the two 5 mgs. I usually ony use it when traveling, since Oxygen is my tank of love. This is my first time on this site, and I am starting that "water treatement" immediately. God Bless to all of you. Nice to know I'm not alone anymore. Feel like I've been a POW in solitary for the last 29 years. By the way, putting food in my stomach always shortens the time for the oxygen to take effect. I use bagles or cereal with milk.
Hi!
I am so depressed -- they are never going to stop. Haven't had an attack for about 1 year, until 2 weeks ago. Then they started again. I feel so utterly weak and powerless against them, as if I am in the middle of a hurricane inside my head. It was bad enough when they just woke me out of a sound sleep -- then I was just afraid to sleep. Now they are attacking me at all times of the day. I hate my children seeing me like this. My 14-year old takes one look at me and knows that I am getting one. He says that my entire left side of my face sags and my left eye is smaller and "weird" looking. (I feel like the Pink Panther's - Inspector Clouseau(spelling?)'s boss).
My husband doesn't know how to help. I just muster up the strength to snarl -- STOP MOVING THE BED!! I can't talk -- it takes away from the energy needed to fight this war. I pray to God to make it stop.
I lose all ability to keep food down -- the pain is too great. I have even (to my shame) lost control of bodily functions during the worst moments.
I try to scald myself in the shower to make a different body part hurt. Then I need ice cold anything on the left side of my head.
After whimpering for several hours, I drift off to sleep, weak and defeated.
I wish my kids didn't see this so much, you have no idea!!
I tried pacing, trying to leave the pain in a different room, I have tried Imitrex, but I can't get enough prescriptions. The neurologist takes pity on me and empties her sample cabinet for me. (I think she should be nominated for sainthood sometimes).
I wonder if my father's drug addiction started trying to get rid of his horrible headaches. He used to shoot sodium pentathol in the 60's to pass out because of headaches! Are they heriditary, will I pass this on as a legacy to my kids? If so, I can only apologize to them and hope that they don't curse my name when they get one!
Doctors in the ER have given me demerol and morphine when they see me, spinal taps thnking that it is meningitis,
My son says that I look like an animal being hunted in between bouts -- gues it is because I know that another one is coming to get me.
Please dear God, just give me the strength to survive this round.
Guess I will post again tomorrow after another rough night.
If you ever want to type, I'd love to hear more.
It is hard on the family, when we pray for death to steal us from that awful pain.
My husband thinks he's let me down, when ice packs and massages
don't help... and I can never seem to stop whimpering once it gets up to level 10.
But I live for the days when there is no pain.
My co-workers thnk I am a bubbly person by nature....
little do they realize, any day without pain is just soooooo wonderful.
I keep looking for the cause, and praying for a cure....
and not one of the doctors is ever concerned.
They ask us to rate the pain - as if objective perspective is possible.
on a scale form 1 to 10
um how do you measure 1,000??? ha ha
and yet, they really don't believe what we say, when we describe it
because to them, well, if it hurt that bad they figure we'd just pass out....
as if it would just be simpler if we'd faint on them...
anyway, keep the faith,
and live for the freedom
of a day without the pain.
TJ
Mine started when I was eighteen.I'm thirty-four now.I've probably taken every drug possible to treat this "living hell"for lack of a better name.The very first one will always be imbedded in my memory.I was at a party at a friends house having a grand old time.I was standing in the kitchen talking to a couple of people when it felt like someone struck me in the head with an axe.Specificly in the left eye and straight through.I had no idea what was happening to me.I only knew that at that moment I would have embraced death whole-heartedly.A few of my close friends brought me to the ER where I spent an unknown amount of time with three police officers pinning me to the floor.One on my legs,one on my back with his knees dug into my kidneys and one holding my head to the floor with all of his body weight to prevent me from repeatedly smashing my head on the floor which is what I was doing.They called in a counselor because they figured I was on PCP.By the time the counselor got there the pain stopped as suddenly as it started.Needless to say nobody had any answers as to what caused it.
Since then you all no where it goes.Sitting in a chair with a .357 in my mouth,crying and begging to the sky for some relief.Banging my head of the floor trying like hell to knock myself out(strangely enough never successfully).
Doctors,tests,doctors,tests,doctors,tests...etc.
But never a cure.Just a bunch of medicine that works for a little while then it's time to try another one or go back to one that may work again.
I've been fortunate enough to be able to limit the amount of headaches I have to endure by taking tons of narcotic pain killers these days.For the first eight years I had nothing.I suffered through every last one of them.Sometimes as many as ten a day lasting anywhere from 20 mins. to 2hours.
I've spent the last 16 years wondering if this is penance for some past life transgression.....Just trying to make sense out of insanity.
I've always marveled at the fact that a person can go through this and still remain sane.When it's actually happening you feel anything but sane.But when it stops,even with the level of exhaustion your left with you still manage to remain mentally intact.....HOW!!????
I could go on forever and never really explain what I or my wife has had to go through because of these waking nightmares.
I feel your pain....LITERALLY!
HELP.. the beast has awakend after its 3 year snooze, need dr.in miami please help.
zline@aol.com
Just found out about web site. Don't know if it is a good thing or not. All of you suffer the way I do. I however have been blessed in the past. I went the past 3 years with out an attack. But now it is making up for it. 3 times a day 3 to 4 hours per attack. many trips to the hospitial. Thought about??? well need i say it i am sure alot of us thought about it You know?. How is it that we able to indure the pain that has us pleding to God to take it away or take us. Burry a burning cattle branding iron into the eye until it hits the back of the skull and only then turn up the heat so that your brain ,eye and face Fry feel like they are melting out your nose. Double that feeling by enfininty multiply it by how old the sun is and other people might have an idea what we put up with. Many times death feels like an option until we rationalize that it will be gone hopefully soon 3 to 4 hours is soon for me.
How many of us have taken the fast way. And how many have been spared by a cure. Is there hope or is there just a hell on earth with no help. God I want this to go away it is not fair for my family. The hell with me they are the ones that got to walk on egg shells, there the ones that have to understand why I can't make it to important outings.
There the ones I hear praying for me late at night as i sit in my recliner afraid to close my eyes in fear that the beast is on his way.
I have been a sufferer for 12 years. This is my 1st post. It is that time again. It seems to be hitting. My cycle is every 2 years in August to September. I recently had sleep Apnea surgery that hopefully may take care of the cycle. I can't tell if it worked, but the cycle is trying to hit. I have not had to use the Immitrex yet, but the pain seems to be lingering playing with my mind. My only hope is that the surgery has worked and I am actually at the end of my cycle when it reaches the Apex and that's why I am feeling it now. I had the surgery a year after my last cycle. Only time will tell how the surgery will affect my cycle, if at all. It does appear to be a little different. More to come.
Hello! Just posted my first msg board entry today,and have spent hours looking through the site. Last 7 weeks have been hell coz of the pain and not knowing for definite what is wrong with me - although everything points to CH. Going without alcohol completely to see if that helps, and now know that whether I stay in bed or not - the 11 o'clock attack will get me anyway! And the 6 o'clock. And the 'stray ones'. Anyway, as I have not been 'diagnosed' by a neurologist yet (awaiting appt from GP referral)I hope that all of you who obviously provide each other with some fabulous support, advice and guidance are not going to dis me like you have with some of the people who have registered at this site. I would like to think that once I have gone through all the tests etc that you have all gone through, there will be support available for me here. Thankyou from a concerned newbie!! xxx
Hello to all, well I WAS FREE for four days, but now they are back. I dont know why they have changed some what. right side only noiseburns eyeruns temple,OH! man. But its still the same in all. the only diffrents is not teeth anymore. I feel the itch in my eye most all day now,something in and around my temple.its making worry, I to ask do people in Fiorida have a longer cycle, aleast this year? Ihave'nt gotten a brake yet.the PAIN the PAIN how can we keep going like this nights was bad enough but now it's some days. Ijust got over another one. Man I'm tied of it. THANKS FOR BEING HERE. GEORGE Good night.
This is something to try. It worked often enough for me to continue posting it:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
I can't believe this site exists! I have been suffering from Cluster Headaches for 14 years, and am going through my 5th cycle now. One of the hardest things for me is that I live on my own so no one gets to see me in that absolute agony. I think you need to experience it or see someone going through it to believe it. When I am not in that hell I feel sick and shakey, and afraid that the next one will come soon. And I am alone - no one understands. Most people think it is like having a headache that an asprin will clear in 30 minutes - no idea!!! For me it is like being tortured by being electricuted - and it can last up to 2 hours without any relief. I wish that someone I know could just understand. I feel alone. Thank God for this site - I would love to hear from anyone who has found medication that helps!
okay deborah i think you meant the messageboard when you made that point about sharing what works and what doesn't.. but i HONESTLY CANNOT GET INTO THE MESSAGEBOARD!! i work in a government building and can't get into places like chat, porn sites (damn!) political pages, or anything like that.. anyway, sorry for the inconveniece...
-matt
since wendy won't answer my emails (which, so you know, were non-offensive in nature) and i can't access the messageboard because my computer is classifed and won't let me go on anything related to "chat".. i'm just curious if anyone has ever actually tried pot for their headaches and not had it work at all? because i've been looking around on the internet and there are a few cases, though not many considering pot's status, where it has.. if you think i'm trying to sell anything than that's your way of trying to dismiss me.. deborah you did say that this guest book is for sharing what works for us, did u not? if you didn't and that was someone else, sorry.. but that's all i'm doing in any case.. anyway, if you have tried it and not have it work tell me on the guest book.. i suppose you could email me if you don't want to put it here.. i am trying to do some personal research and feedback, and i'm not some druggie like some people might want to believe because i have genuine sympathy for those who do get clusters.. the fact that mine are definitely not as severe as some of yours actually make me feel kinda guilty.. i didn't think clusters COULD get that severe.. anyway hope someone responds... c-ya
-matt
i thought i was nuts until i found this site.nobody takes
me seriously.as far as i know no one i know suffers from this particular type of headache.migraines yes but not this
even the doctors ive seen in the past dismissed it as no big deal,tylenol,aspirin,sinus infection.no one ever called
it.until i printed out this info and stuck it in their pompous asses did i get any kind of help.love to trade one of these late nite wake you up out of a dead sleep episodes
with one of them.i finally got some meds/inderal once a day
and maxalt mlt tabs 10 mg.it helps had these episodes from
early adulthood.apparently most md's dont have a clue
Hello everyone my name is mike and i've had clusterheadaches for about four years now. For the first year what a scare, didnt have a clue what to think or do. After spending hours in the emergency room and hours parked on the side of the road or in a parking lot when i could make it or shut in my bedroom wishing for a quick end to life if need be to end the pain, i was finally refered to a nuerologist. Then i was told i have clusterheadaches, try this imitrex and deal with it! What a joy. (Deal with it or butch up that is) After three more years with what i have now learned is episodic adventures, 3 month episodes twice a year taking medrol pack and imitrex with some relief i have finally found a doc that sounds like he wants to help. The first year though i took so many different pills that i have seen listed on this site i wish i had found yall sooner. Anyway thought i would say hello and thanks for the information that has made quite a difference on my attitude toward this problem called the beast. By the way after reading the posts for a while now i have to feel lucky that mine are episodic and more sporadic than others. Dont know what i would do or i guess will do if they become chronic. Good luck to everyone for some time pf. Got to go for now but will talk to yall on the message board sooner than later.
Mike
Oh, hello again... it's me.. Stephen, the sporadic, heavy headed, oft-times ogre looking visitor/member. Quickly, I'll get to my point so as not to slow you up from learning what it is that I do that works for me. Then I'll start my weepy-man stuff. LOL
Water, Water, Water, Water, Water..but ya need salts too! Don't forget the salts! Hydrate yer self smartly.
Firstly, for three years now, I have been armed with a script from a Neurologist which states, "Upon arrival at (Hospital) Emergency Room with acute Cluster Headache, immediately administer Intraveinous Dihydroergotamine protocol." It goes on to say that if it doesn't work straight away, "Hit him again in twenty minutes." This has always made me feel 'Welcome' at the Hospital. And for the record, this protocol has released me from the clutches of the Beast on at least 6 occasions to date. It's not often I cross the threshold that says "Hospital Side or Suicide", but you all know the thought.
Secondly, and I'll let you all do all of your own research into your own situations and theories and needs, but I have applied for and been granted permission from Health Canada to use marijuana medicinally. In the first place, research indicated to me that cannabinoids are a chemical already found in the brain. My thoughts piqued at this discovery, and so I typed "marijuana headaches medicine" into Google, and the rest makes a part of my medical history. Other research had me trying to find the root of the facial symptoms of the Cluster Headaches, such as Horner's Syndrome (the droopy eye and cheek and lessened mouth/speech muscle co-ordination), and the myopic weakness in the actual muscle of the eye. Much of this has pointed me towards the Fifth and Seventh Cranial Nerves, and I am also somewhat interested in the Tenth.
Research around marijuana has suggested that the sympathetic receptors in these nerves acts somehow to these parts of my headaches. My experience shows this herb to be useful to me as not only a prophylactic, as I have experienced longer periods "Out Of Cycle", (20 months most recently), as well as experiencing 'Abortive" instances, where a quick small series of puffs acts as some sort of vasoconstrictor, and can counteract the onsetting symptoms within two to five minutes. My third and final consideration presented to Health Canada was that the use of the herb may just permit me to get some sleep.
As with many, I come and go as do the cycles and the fatigue and exhaustion and desperation that coincide. This is a good year of headaches for me. Lots of shorter duration, though not necessarily diminished pain. But any of you would rather a thirty minute session than a full blown six to nine hour or even chronic bout. I'm in week 9 now, expecting the end to come soon, but knowing too, that there is always the potential for change from the norm. Last year, for the first time in my 26 years of Clusters, they changed and went from only affecting the right side of my head to affecting both sides alternating. It had taken me 25 years to get used to them being on the right side, and I had NO IDEA what to do with this newfound pain on the left. I'd never had to massage there, never had to dance to the music in that place. I was lost. This year I am lucky that so far they have returned only to the right.
I imagine that as with many of your fellow sufferers, countless hours are spent on the "Why?"
I almost always come back to our overall environmental exposures, and the minute changes which may trigger bigger responses within the Human prone to such things, hence the variations in amplitude of pain, thresholds we are capable of withstanding, fortitude to somehow force ourselves to remain human-like in the grip of a pain that is ANYTHING BUT HUMANE!
The "Why?" .. we identify and acknowledge and avoid triggers, ours, and the learned ones of others, we read and digest and try to understand the things we did today, or yesterday, or in our lifetimes that has predetermined our fate to pain.
And then we look in the eyes of our loved ones who hurt so much for us and who would take some of this pain from us if it were posssible. We love you soft hearted wonders of our lives! God Bless you!
I know only this. This is my pain. I have come to know it and to accept it as being a part of me. I would call it 'my problem', but you know? I would never trade my problem for anyone elses. Because I don't think I could ever be that mean to any other human as to give them this.
Print off everything you could possibly take to your doctor, highlight all the things that are particular and pertinent to you. Remember that your Doctor works for you, and that you should be clear and concise in your information to your doctor, and in ensuring your doctor knows what you feel is best for you, and respects this.
May you find a peaceful path and follow it to your place of tranquility.
great site...it's nice to know that i am not the only person suffering from cluster headaches. it's nice to find others who understand the pain that i have to go through...over and over again. i think that my family and friends think that i am over-reacting and that it cannot be as painful as what i describe. i wish that they could feel what i feel for 2 hours or so day in and day out during an episode for just 5 minutes...and i think that it would probably shut them up real quick. i don't blame them, though...not a whole lot of people have even heard of this disorder. i am 24 and have been dealing with this for 2 long years now. the only person who tries to understand is my lovely wife...but, there's not much she can do except watch me sit on the floor and rock, crying and cursing...or putting my fist through the wall. i've been to doctors, neurologists, opthamologists, e.n.t.'s...you name it. it's a big run-around...too afraid of a law-suit (i live in Pennsylvania). i have tried several prescriptions...none have worked. i am becoming quite depressed...and have even thought of taking my life a few times. i am just so damn sick of waking up to an episode an hour or two after i drift off to sleep. i am tired of it happening at work where i am not able to go through my usual routine. i am tired of it happening at social gatherings where i am forced to grit my teeth with each pierce and try my best to act normal. i am just at a loss for what to do...i don't know where to start...but, it looks like i might have found a good place right here. i wish that i would have come across this site sooner. i read the testimonies at the intro to your page...and it's like deja-vu...the exact damn thing that happens to me...the exact same reactions...the exact same descriptions...the exact same pain. i just want to be normal again...it's just so strange how this comes on out of nowhere. i just woke up one day...thought for sure i was gonna die...and after exhaustive amounts of tests, etc. was told that i am a cluster headache sufferer. well, thanks for your awesome site...i will be sure to use the information i have found here to try and make my life a little more livable and maybe to help my family understand me a little better.
This message is for everyone that was offended at what worked for me. Let me explain, I don't care if you want to try those witamins or not. I got involved in those simply because of the way they have made me feel. Please let me correct myself, I meant to type the word vasoconstrictors, not vasodialators. I do have these type of headaches, my right eye droops, my nose runs, I start to sweat, I get up and walk around in the middle of the night, rocking and walking. So please, I merely suggested something to you guys that worked for me and me only. IT WAS A SUGGESTION!! I did not mean to get anyone worked up.
No one at CH.COM will EVER try to sell you something, Beware of those that try!
..................jonny
Anyone suffering from cluster headaches, I encourage you to join the message board and learn about the new medications, treatments and research that is going on in the world of CH. A previous post suggested that the root of clusters is unknown. While the specifics of the cause are still unknown, it is well known that the root of clusters stems from the hypothalamus. There are many different medications that are available to help prevent and abort these headaches. There is a great deal of new research that is ongoing to find the cause and to find new medications that will help with this disorder.
The awareness level of clusters in the neurology world, and in the medical world has been rising rapidly and continues to get high profile exposure from many different avenues. Please join in the site, and join with OUCH (Organization for Understanding Cluster Headaches) and learn about new information that is available.
Cat
Hello, I suffer from cluster headaches. I just moved back to the Pittsburgh, PA area and I am in search of a good neurologist. If anyone has a good one please let me know. It's nice to see we are not alone in our suffering.
Hey there to all our new guests. If you seriously feel you have Cluster Headaches, we invite you to join us on the Message Board for tons of useful information and support. We do not sell anything or make any promises for any cures. We do not appreciate anyone who does. We are simply here to share what does and does not work for us, and share other information that helps us get through when it sometimes seems hopeless. There are many of us who know your pain and who understand what non-sufferers can never understand, though they try. We have alot of wonderful supporters as well, and we have a section on the message board just for supporters as well as a section for children with CH. Please feel free to drop in and chat. We are here 24/7. Also, please ignore any rude or obnoxious posts you see here on he guest book. Usually these posts are from someone who was hoping to make a buck on desperate sufferers and got slapped on the knuckles before they could collect. We protect each other, we are family. If you are a Cluster Headache sufferer, Welcome home.
Little Deb
Whay are you singling out and attacking Wendy? It is common knowledge that Acetominaphin does not work on Cluster Headaches. It is goold as an analgesic on migraines and other forms of headache - but there is not a pain reliever known to man that 'aborts' cluster headaches. Even Stadol, as heavy of a narcotic drug it is, does not knock out the pain of a CH. All I can say is, if your headache is gone after taking Excedrin, you DO NOT have cluster headaches.
Thanks, and God bless,
Carl D
Mr?Mrs Non Ch sufferer
This is not a message board, it is a guest book. You want a debate about how I know dope and Excedrin and herbal supplements don't help Ch sufferers. Come talk to me there. I'm waiting
I always thought I was in cluster hell, but reading some of these postings, it turns out I'm merely in purgatory. I've been getting them for some 15 years, never more than once a year, in nine to fifteen month cycles lasting four to six weeks each. I've had the odd wake-up call at 2am, but usually they come on in the morning, about two hours after wakening, always on the right side of my face, first the shadow, then a modest pain in my teeth, finally an excruating explosion above my eye that travels through and around my eyes, piercing the back of my eyes like a hot dagger, then down to my teeth, along the jaw and neck, then through my ears to the back of my head where it lingers and dissipate until the next explosion, and so it carries on, sometimes a few minutes, usually one or two hours, once or twice the whole day. I worked in an investment bank for many years and I had to go hide in the toilet so no-one would see me like this. I have no idea what brings on the cycle, but they tend to come when I take a break in my running (i'm an avid marathoner). What i have learnt is that while it is probably impossible to prevent these cycles, it is possible to greatly reduce the severity of the individual attacks. I find that my headaches in the morning are usually triggered by low blood sugar, so I make sure I eat the moment I get up (predominantly protein-based meals) and wash it down with some coffee. I avoid all sugar during this time, or anything that would cause a spike (and sharp drop) in my blood sugar levels (i.e. pure carbohydrate-based meals like fruit or a slice of bread), and I eat regularly through-out the day. If the shadow is there before I've eaten, I add three or four aspirins (a recent discovery, which, believe it or not, works for me)and this tends to avert the attack. However, once I am in the middle of a full-blown attack, nothing really works. When the attack is at the top of the scale, I find I get a buzz off my body's own pain killers. The length and severity of the attack tends to be correlated to the amount of sugar (in whatever form, even fruit) I've had in my diet over the past twenty-four hours. My worst ever attack was in Brussels, after missing supper, and polishing off a bar of Belgium chocolate instead. Other triggers during this time are strong smells (such as cigarette smoke, heavy perfumes or room freshners), drafts over my face, too much sleep, too little stress, alcohol, anger. Since making these adjustments, life during the cycle has become far more manageable. It used to be that at the worst point of an attack, life ceased to be worthwhile, and suicide promised to be the ultimate pain killer. There is one positive about all of this - I can really appreciate how precious life without pain is. Vasbyt!
Hi all...I'm a 34-year-old woman, suffering, as all of you, from Cluster headaches. To you all, my heart goes out to you all. I understand the excruciating pain that you feel, and, like all of you, is looking for a cure. I have had these "clusters" every year for the last 14 years. They occur mostly in the fall, and last for about 2 months. For myself, I believe to have found the trigger - barometric pressure and my cycle. In the past, I have tried Imitrex, Verapamil, a "drug cocktail" of Elavil and Prednisone. They have all worked to some degree, but the "Beast" always insists on running its course, until the next cluster (usually 12 months later). As most of you, I have tried (nearly) everything - hot compress (bad idea), throwing up (seemed to work in the early years). This year, I have found that "attempting" to decrease the body temperature has worked somewhat. I have taken icy cold showers at the VERY BEGINNING of the "episode", making sure to target areas that are known to cool down body temperature - arm pits, and between the thighs (I believe that it's decreases the blood flow to the blood vessels, and redirects it to the major organs). Obviously, I'm not a doctor, so I'm not allowed to practice medicine ;o), but, when you're in such excruciating pain....you'll try anything to make it stop. One last note, I saw a documentary on CH recently. They mentioned that CH sufferer appears to have a larger hypothalemus (sp?). God Bless you all, and hope that a cure is found soon.
I'm a female 45 years old, do not smoke or drink, so I am not the text book candidate for these horrible things, but I have had clusters once a year for a month at a time, (every day during the month and several a day at the end of a cycle) since 1976. Only once did I skip a year, but they came back with a vengeance. I have tried EVERYTHING. Only Imitrex injections work, other forms of imitrex take too long,and the headache is in full bloom by the time the med kicks in. Two nights ago, I took 3-4 injections in a 24 hour period, which is not recommended but I was in so much pain that if I died from too much medicine then at least I would have been out of pain. In a panic that the headaches would not stop coming every six hours, I honestly believed that only a general anetheitc would relieve me. However, I couldn't drive to the hospital so I writhed and screamed at the top of my lungs for 3 hours or more. It was UNBELIEVALBE PAIN. Like a blow torch behind my left eye, pulsing in my eardrum, tightening in my neck, a clamp on in inside of my face on the left, with totally blocked congestion. My eye felt like it was the size of a golf ball. The horrible thing tinkered around in my head the whole next day like a warning that "I'll be Back." Today I feel fine but I am scared to death its not over. I would like to believe that two days ago was the grand finale, but these things have a mind of their own. I believe that nothing can prevent them, that even if I do stall them for a time, they will always come back. These headaches have complete control over my head. I can only relieve them with shots but I am limited on how many in a 24hour period. I drink a lot of water hoping to flush the poison out of my body, because the headache leaves a residue of poison in my head until the next eruption. At least thats how it feels. Misery loves company. Its somehow comforting to know I am not alone, but I wish these things would go away permanently. Feel free to write. jclogue@aol.com
Hello all, it's almost 4:30 am and I've been battling with "the beast" AGAIN for the last 2 weeks, (as always... I'm not winning) I'm afraid to fall asleep, because I know (as you all do) "HE" will wake me again.
There is only one thing that's worse than the PAIN.................. and that's... "sitting here FEARING the next one.
Hi I am aged 34, from the uk i have been suffering with Severe headaches and was always told they are migrane, but after seeing this site i now know exactly what they are. i am currantly in to the third week of a cluster, after having a two year break from them. at least i know what they are now after years of agony...but little consolation. I try to explane the pain i feel to others but im sure they think im just going over the top, so i will be directing them to this site.
Hay everyone. It’s time to check in again. This is about the water thing .I though it was a joke. Well i don’t think it is anymore. I have been drinking a lot of water and it is helping. Better then that they are gone and i don’t feel like they are coming back ..(CURE) I hope so The first time i got a break from my clusters is when i went swimming every day one summer. I think it had to do with lowing your body tempera for lone time. The key is lone time in the water .It worked for me .Tryed to keep my head under the water as long as i could well i was moving rocks under the water from place to place. Just laying in it would work too. It has to do with something like cooling the blood vessels down. try it. It just mitt break your cycles. Well good luck everyone hope you all have a pain free day PS need more info call me 978 302 3883
Up at 430 trying to track info down. Better than the beast
Hi. My name is Rhonda. I am a wife, a mother, a friend, but feel less then human with these headaches. I feel worthless when they come around. Right now my husband is sleeping, he was up half the night with me. My c.h. I'm finding are not nearly as bad as some, or maybe it's because they just started. I'm ending week 2. Last year I stopped counting at week 8. Right now they have subsided, but there is that lingering when...when...when...It is very helpful to know I am not the only one out there.Thank you for this website.
To Matt, I hear you man it took years before someone finally diagnosed me with cluster headaches as well as muscular and migranes all at the same time. Right now the doc has me on Vearapamil, Flexeril and some stuff called Butarphanol Tartrate. The stuff is stronger than Morphine but still does nothing for the pain but keeps me real loaded so that I can at least go to sleep. The only thing those dam pills do is knock off a few days or two. I want them gone forever.
I am 35 years of age and got my first attack at age 19; a c.h. sufferer for 16 years. For about two episodes the remission period lasted 16 months. Over the last two years the remission was only 7 months and the headaches have switched sides and have lingered for four months now. I am tired of being in pain and taking narcotics that don't stop the pain.
I am going to the doctor again today. Hopefully this time I have a doctor that will actually hear me when I say I am looking for prevention instead of a band aid approach. Tried Zomig, works great but am so wiped out afterwords it isn't any better than laying around with the headaches for 3 to 4 days. I am trying just about any remidy out there that is natural. I really don't want to use anymore man made stuff that has more side effects than the headaches already have. Wish me luck at the doctor.
Hi, i'm gary, a 33 year old, young, fit, working family man...until the start of 2004 i became another victim of C.H. My life has changed, i no longer work full time, i now know what real pain feels like. I went into hospital for 4 days for tests and a brain scan, i was given medication that would knock out a horse, which by the way does not work, i have since been to my doctor for at least 6 diffrent types of pill, which are all useless. My point is during that time not one person mentioned the word CLUSTER!!!!! Thanx to the web, and sites like this, my wife found out what was wrong with me. I think there should be leaflets in doctors surgery's all round the world, because from what i have seen, CLUSTER sufferer's are not a minority, thank's to you and all of the people who have posted comments before me.....we all now know, our condition is real, we are not alone.......thanks for reading. love.
hello! I am 20 and have been suffering with headaches and eye pain on and off for the past three years.I have just come back from the doctors after a diagnosis of cluster headaches. I am relieved that I know what it is now but I am just hoping the medication will help!My head and eyes are killing!I find that neorofen for migranes helps quite a lot but I am so fed up with having to keep taking them every 4 hours! It is only 10.45am and I have already had 4 headaches lasting about 45 minutes each. I have had this bout of headaches for about a week now and the last lot I had was about a year ago and lasted on off for about 3 months. This is only my first week of getting them again-not looking forward to the posibility of it lasting another few months!Dont u all just feel like u cant do a thing?! all I want to do is close my eyes! Oh well, enough complaining!...thanks for the info everyone. I need to go lie down, my head hurts!! Bye.xxx
i get spots,blured vision,numb face and arms,also nausious,and vomit. the haedachs accure every day,the sever headachs occure 2 to3 times a week,and last from12 to 24 hours
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Matt (his messages are below)
Marijuana smoking makes clusters worse for most sufferers. Glad it works for you. If you read the message board I have posted a message for you, but it has been discussed there many, many times
Looking for a doctor in Dallas who specializes in this area. My headaches are getting worse and more frequent during the nights.
SONOFBITCH PEOPLE.... read my entry.. it starts off with "Hey people.." dated august 14 or 16 or something. Give me some f'n feedback, either on my email or on the messageboard. I really am curious to see what people think, especially if you've tried my method. -matt
I'm a migraine sufferer, but I think I'm having cluster headaches as well. Oddly enough I'm on most of the meds people have described here and none of it works well. I mean I can have a headache all day on and off and it can last for a about a week or two. My docs say it's only migraines but THESE are different. More painful and in burst behind my eye. It feels like stabing, jackhammering, pounding electrical pulses that should kill you but only make you wish you were dead. My migraines can get awfully painful as well but in comparison if these are cluster headaches then they are just killing me. I'm already dibilitated by the migraines and I've had several episodes of this different more painful headache for the last 2 years. Does anyone else suffer from both migraines and cluster headaches?
I have been dealing with the demon for 22 years. I am now 38. Since I am from a large family (eight sisters and two brothers) and my mother and at least 4 siblings get migraines, I always thought that that what they were. I recently found out that one of my bothers also is a clusterhead! I have tried many different treatments (depakote, sansert, predinsone, a few beta blockers, O2, and most recently (currently in a cycle) verapamil and indomethicin for prevention and last week, Axert for abortive measures. I have found that my attacks are less with the verapamil and indomethicin, but it does not "catch them all, unfortuantely. I have not determined for sure if the Axert works for sure? Otherwise I have not found anything that will abort the demon. I used to cycle once or twice a year and have now stretched out to every two years over the past 8 years. The attacks are longer in duration now than they used to be. I am hoping that this cycle will wrap itself up soon... It is a great comfort to know that others have dealt with this and truly understand!!! Thanks all!!!
i started getting theses headaches(if thats what you want to call them) when i was in my late teens/early twenties. i came across this site about fours years ago while in a bout with theses headaches.it was nice to know there are people who can really relate to what these things are really like. i dont believe anyone who does not have these things can really understand the pain involved. i am currently in a bout now. they have been going on now for about 2 1/2 months now. i normally have them for up to four months at a time. i am currently getting 2-3 headaches in the middle of the night on top of at least one good one during the day. last week it seemed i went the whole week getting one every 4-6 hours. it was bad. i am now 36 years old, and have had these for about 16 years.
Do any docs chech for hiv in any of you ? during the test phase? JUst wondering. Or is this not typical finding with cluster headaches? Thanks
i been getting up every morning with a bad headache that i had to crysometimes it last two or three times in a row i ready had them all my life i can't hold my head up it so bad sincerly debbie rose;
Thanks for the great information! Im glad that I found a site that people can relate to what IM going through,
i have had these things for 16 years with about a 2 year remission in between. its hell.
Hey people.. i was about 17 when i got my first cluster headache.. it took the asshole eye doctors months before they were finally convinced that i had what i was telling them i thought i had. anyway, they proscribed some pill that was supposed to "prevent" these headaches. does anyone else see the total pointlessness of taking a pill?! sometimes, i wouldn't have an attack for up to a year and a half.. indeed its been over that amount of time since i've had a cluster headache. sufferers of these bad-ass headaches KNOW that instantaneous relief is a necessity if you don't want to go half-way insane from the pain they cause. i am referring of course to marijuana.. i bought some really good stuff to keep near my bed in case i had an attack.. sure as hell, one morning i felt one coming on and i smoked a fairly large amount of it.. 3-4 lung fulls i think.. anyway, they pain was immediately dulled. i won't lie and say that the pain goes away completely because it doesn't.. but it DOES dull it down by a good 60-70%.. more for other people.. when the attack finally dies down after an hour or so, you're going to be tired as hell anyway.. so u might as well enjoy the high while you're at it and go to sleep.. i'm in the military now and i can't do that kind of stuff anymore.. but you can bet your ass if i wasn't in, i would keep an emergency bag next to my bed just in case.. i wasn't a regular user at the time, but i'd smoked before.. i was a kid growing up in los angeles, one of hundreds of thousands.. and i'd heard that people use marijuana for migraines so i thought what the hell... i'm telling you, it helped a lot, despite what laws are in effect and despite your personal view on the subject. i'm not telling you all to go out and buy pot, but i am telling you what seems to work pretty damn well... at least for me... write me tell me what you think.. i am curious -matt,22 pzychotic@hotmail.com
If this can help anyone, 2 things that I discover after 22 years of Cluster. First, one of the trigger for my headache is crude onion and second is that Boldo tea (Peumus boldus) reduce/cancel the crises just when the cycle starts.
Hello fellow sufferers and symphathizers. In reading the postings, I see I am a relative "newbie" where cluster's are concerned. Started getting them about five years ago and always got them right around Thanksgiving...that is until this year. Started having them this week which is something new for me as it has never been in the summer. I take Depakote from Oct 1st until Dec 31st and that had me headache free for two years. Back on the Depakote to try and stop these but no luck so far. Quick question.....are any of you cluster sufferers more susceptible to "ice cream headaches" than most people you know? I can get an ice cream headache from cool water and will most assuredly get one from anything that is very cold. Just trying to get a better idea of wht's heppening behind my right eye. Thanks ~ Greg
Nice to know we are not alone at all hours of the night.... If anyone ever needs a group of people who have undergone mans worst known pain, we are the ones....Barb
Just a quick note to say HI to our new guests! We are glad you found us and hope we can be of help to you if you suffer from Cluster Headaches. Please feel free to visit us on the MESSAGE BOARD. There is alot of valuable info there on meds and other related stuff. Also there is a wonderfule support system. Someone is always on the board 24/7. Stop by and say hi. The purpose of this site is so all will know that they are NOT ALONE. Questions? Read as much as you can at the LEFT. If you still have questions, please don't be afraid to ask.
Once again, WELCOME. You have found a new family of people who know the pain you feel.
We do not appreciate or tolerate anyone posting that they have found a miracle cure or are trying to sell something. Those of us on this site have a great understanding of Cluster Headaches or can direct you in the right direction. We welcome with open arms anyone who suffers from these dibilitating headaches.
Little Deb
I totally believe cluster headaches are caused by a stomach bacteria. The bacteria named "helicobacter pylori" may be the main bug . There may be similar bacteria to this or even a combination of different bacteria that cause the headaches. HOW CAN A STOMACH BACTERIA CAUSE THESE HEADACHES??? I'm glad you asked. I had clusters for 20 years. I noted every thing I did before I got a headache. My sleep, drink, eating, mood. You name it and I considered it. Nothing made sense. I got them in the winter,spring,summer and fall. I got them in the day and was woken up every hour of the night with one. No set time. Finally I got it. I am not a Doctor but my life depended on a solution. Literally. Think about this.
Eat certain foods = headaches. Drink certain liquids=headaches. Sleep(body metabolism slows)=headaches. Every thing ties into the stomach!! Regular antibiotics will not work. You need to take a combination of 3 different antibiotics. The combination that Doctors now use to fight Helicobacter Pylori . This is the bacteria that causes ulcers. Also a friendly bacteria named Lactobacillus has been found to be very effective. Sorry I don't have the name of the 3 antibiotics but your Dr. will or should know them. I waited three years to test this theory. I am truly sorry for the time period but I had to be sure. Not a single headache in three years. My last session of headaches lasted a full 10 months, every singl day and up to 6 per day. PLEASE, PLEASE CALL YOUR DOCTOR AND INVESTIGATE THIS. MUST TAKE FOR A FULL 21 DAYS, not the usual 10 days for most antibiotics. Stay strong and I hope you have the total success I have had.
Hey every one I'm 16 years old and I've had bad headaches for 8 years. My doctors have no idea what it is. I've taken anything and everything from something as weak as Clariten, now I'm on an anti-depressent (zoloft) for chronic pain. Nothing seems to be helping so I started looking on the internet I believe I have Cluster Headaches, but knowing my doctor he'll take forever before he gets me on the right medication, so if you guys could send me any over the counter medicine's that have worked for you it would help me out a lot and I would appreciate it more than anything in the world. If you would please send any information to atroxell8@hotmail.com
Just found out about this web site, I have had clusters for 10 years now. Mine are on a 2 year 2 month from the time they start and last for 3 months. So to some of you out there sorry its not seasonal the 2 months added to mine makes it start at a different season each time I can just about mark it on my calendar. I really feel for anyone that has them closer together than this but also for them to last for 3 months with no break is pure hell.
Im sorry I also forgot to ask about o2 along with the sever freezing feeling after my hubbys chs. He just sent to va and will be sent 02 we hope real soon, I really would love to here from anyone who has tried or has had relief from yet another atempt to fight this bitch of a beast. MY HUSBAND IS ON NOW imiterx, predizone, zomig,verapamil zomag sray. He does drink a ton of h20, my heart breaks for him and all of you. hope to hear from anyone soooooon!!!!!!!!!!! thanks soo much hang in there chs and the ones near and dear to them god bless
Well, Im back to ask some questions, but first I want to send out my prays for all who suffer like my husband from the beast!!!!Anyway Im Im interested to hear from fellow ch if any of you get severe chills and are freezing cold after a cluster ends?
Wow, didn't know there were so many people out there with my same problem. While it is nice to know there is, and that I'm not alone, I sympathize with all of you. I've had my headaches for 31 years. They started when I was 13 and that first one was so bad my parents took me to the hospital since they had no clue how to deal with them. For the first 10 years I had them 10-15 times a year for a couple days at a time but now they come about every 5-7 years and last for months. My last episode lasted for 7 months with anywhere from 5-10 headaches per day. My most successful relief is oxygen and if I catch the headache right away, it will be gone in 15 minutes, however, since discovering this website, I'm going to try the water treatment when my next episode occurs. I'll keep you posted on the results. Imitrex works too, but as you know you are limited the the amount of medication you can have within any 24 hour period, so the Oxygen is my only rescue when you have so many each day. Makes it hard to get any sleep since it seems that when I do go to bed in the evening, within 45 minutes to an hour, I'm awakened by a headache. I've seen other testimonial's that other CH experience the same thing, so you would think doctors would have some clue as to why that is so. Anyway, one, of the many doctors I've seen, told me that these headaches will 'disappear' when I'm in my mid 50's.... We'll see....hope he was right...Hang in there ALL, signed fellow CH....Ann
Have you seen WebMD.com? I cliked on search went to diseases & conditions,cluster headaches. WOW! what I got from the Clevelavd Clinic: Try it I think you will feel a little better. Suffer George.
Dear All,
How are you doing!!! I am south Korean suffering from the monster cluster headache for the last 10 years. do you know any specialist in Korea to help me.
My cluster headaches started when I was seven. I was knocked doen by a car and spent over 30 years paying for this experience by having headaches on an average of 5 times per week.
john J Connolly
The very fact that I'm up at 2:30 in the morning staring at a computer screen could meen a cluster headache for me.
I saw this site a few years ago but I havn't come back 'til now. I want to share my experience with cluster headaches.
My friends called it "eye pain".They knew when it was happening and to leave me alone. I started getting "eye pain" when I was in 8th grade (although I also get classic migraine from time to time) They were very minor at first but I noticed I would get them during math class around 10 am. Then it was about every day at that time.
They didn't start getting severe until I was 15. At that time the were usualy on one side and still worked on a schedule. It wasn't that long before I started getting them on both sides and off the schedule. I was the kid who got to leave class to go deal with the pain outside whenever I needed. I was like Jekyl and Hide. I got MRIs , CAT scans and all that stuff and no doctor knew what was up.
I took a bunch of different medications but gave them up when I was about 18.
A few time I got ones that made me feel like I was going to pass out. I lost feeling starting in my forearms going up to my pinkys. This usualy happened when it was hot.
I think dehydration was a factor in their severity.
Things that may set off eye pain-
TV,movie, computer monitors in the dark or for too long.
Stress, anger, emotional build-ups.
The headache seems to be a release of these.
It's been 12 years (I'm 25) and I still havn't really determined
precicely what foods trigger them but obvious ones are
sugar, caffeine, yeast, aged cheese, maybe nuts.
I still eat these but knowing limits is difficult.
I have been vegetarian for 2 years. Also I drink
fresh fruit and vegetable juices.
I have also been doing yoga and pranayama (although not too regularly lately).
Perhaps what I write here may get a bit esoteric or spiritual for some but
I think the most important things to consider are
the breath and water (air and water , 2 of the 4 Empedoclean elements)
Focusing on your breath is a good idea in general but
especialy helpful during an atack.
I dont care to go into the mechanics of breathing now but
look up "Pranayama" and this may help you.
Drink lots of water (in general of course) but it helps during an attack.
Do your best not to give in to the pain and frustration.
I still do from time to time but remebering is powerful.
Don't let it get the best of you.
See the pain as a release and let it all go.
Your eye is tearing for a reason.
The more I tear the more the pain washes away.
Instead of pacing and banging your head or fists
do a headstand.
Don't smoke anything!
Ok time for bed, I'll share more soon.
I hope to hear from people here.
-Dan Duddy
Owe no man any thing...
-- Romans 13:8
tramadol
Hey! Kids, george here, I found answers on the monster, On WebMD.com WE have to come together, and PUSH for help from the mew midia. I can't go onlike this, and know YA'LL CAN'T. i GOT anew job today gone from home 11 house, got home, GUESS who ? PLEASE try and E-MAIL,and ask anyone who know's what your going thougth.To E-MAIL 48 HOURS,60 MNI'S'OPRHA DR.PHIL ANYONE that maybe can LET people know about"US". WOW! I JUST CAN'T TAKE MUCH MORE OF this "pain".Your friend. George Thank You for your "HELP"
I AM NOT ALONE...
I am so happy I found this site. I am 23 yers old and I have sufferd from Ch for 4 yers and evry time it seems to get wors the meds stop working. I have bin through many doctors and noone knew what was wrong. So i was very happy to see you guys!!
I love this net, I'v found out, or gotten so many answers.since I'VE loged on. Thank You, all. From SUFFER, GEORGE.
I had Ch for over forty years, 9 years ago I quit smoking and have been cluster free ever since. I had quit smoking a few times previously with no releif, but everyone around me smoked at that time and now i live in a smoke free enviorment.I still worry that they might return to haunt me again.
I,m going to try again be for I,get cut off. I,ve been getting the demon for about fifteen years, on and off, however, This year more then ever, At least four or five times a week. Mostly at night,cycles from 30min to 3 hours I'm taking care of IT' my self. with a hairdryer on hot up and down the right side of my head, neck to tempal, also put my head under hot water in my kitchen sink. ouer and over until it brakes. WHAT I DON'T understand is how do Ya'll keep a job. HELLO TO ALL WITH OR WITH OUT,"the demon. GEORGE
I dont know if this will help anyone, but here are 2 things that I noticed seem to trigger my headaches: 1. black tea. I dont think its the caffeine, as soda and coffee dont bother me, but someone said black tea has tannin in it and I may be reacting to the tannin. herbal tea does not bother me as there is no actual tea leaves in it. 2.daily supplements. some daily supplements are blood thinners and some help to expand blood vessels...take a look into what ingredients are in your supplements and ask your doctor for more info. at my work I sell supplements for increasing stamina, virility and body enhancement...some of these increase the size of blood vessels and will cause headaches.
take care everyone and have a pain free day and night!
I BEEN trting to get something on the board for three days but PHNOE ,keeps disconnting. hey I'm george one of the framily, I,going on eight,years. I'M SIXTY now. I'm going to post this now so I dont loose it, I,ll be right back.
I have been having Cluster headaches for almost 15 years. They come in 2 1/2 to 3 month cycles and I have them three to four times a day everyday for the lift of the cycle. Like many others I have had doctors tell me it was just a something people go through when they have a high stress
job and they get over it, but believe me over the 15 years they have done nothing but get worse. Each time I get them My personnel doctor just gives me more and more medication
that doesn't really help. I think I have finally got someone
to listen at the U. of Chicago Hospital, in Chicago, Illinois. This doctor did more for me in two short weeks then many have over years of doctoring. Imitrex, tomack and
another medication which stopped the headaches in just two weeks. I was more impressed by the U. of Chicago doctors then anyothers I have seen over the years. No one can says if the headaches will stop with age but there is some hope
for all of us if we get the right doctor in your area to listen. Don't give up hope, there is doctors out there that will listen to what you say and feel.
I don't suffer headaches myself. But my husband was diagnosed about five years ago with Cluster Headaches. I am feeling so helpless, and afraid for him. For the first four years he would get several headaches a day, moderate pain, and the cycle would last about four weeks, then they would go away for several months. About five monthes ago he started a cycle, two, or three headaches a day, severe pain. He's been to the Doctor, to the emergency room, and tried all kinds of medication, nothing helps. He was just refered to a Neuro doc. I pray he can help. Im so worried. My husband is very stong, he's in the military, and very healthy. This is the worst, and longest cycle he's ever had. I really feel helpless, and I can't stand his pain. He's a different person. This is a guy that wakes in the morning singing. He's always happy. But in the last several months he's angry all the time, the meds he's on make him tired, as well as the pain does. Right now he's taking Amerge at the on set of headache, Vicodin for pain, and Valium. But like every thing else he's been on it doesn't help. He had two steroid injections in his head, it didn't help at all. He's had a brain scan and it was normal. There has to be help someplace out there, we are at a loss as to where to go, and what to do. This is affecting his job, He's an Army Recruiter, it's affecting our family life, but most of all it's taking over every minute of his life right now. Will this cycle ever end? Are there things that can help me get my husband back? This monster has a serious strong hold on him. Im afraid the monster is going to win! The pain comes the same time everyday, lasts about the same time, and the pain has become so severe he's pacing, holding his head, rocking back, and forth, he shakes his hands in like a panic. The headaches wake him at night also, 3:00 AM everyday. Everything I've read about cluster headache discribes him. I am so desperate to help him I beg anyone with advise to please E-mail me. I know there has to be a treatment out there that can help him. I pray for all who are in the grip of this awful monster. This has got to be the worst thing to live with.
My mother has seizures, and I was wondering if anyone knows of any neurologists in Waverly, TN? My mom wants to find one closer, she goes to one in Memphis.
Just joined the group, I have had clusters since 1985,
every year for 2 weeks.Sometimes in April, other times in May and June, this year they started July 19-04 and are still ongoing, every night at 2:00 a.m. I wake up with pain in my left eye and inside my head.
So glad I found you!
I am 49 years old, and starting seeing neurologists with complaints of severe recurring headaches when I was 17. They did all the tests, tried all the drugs, and never had an answer. I had visits from The Demon for months at a time, usually spring and fall, for years. I lost a year of High School to this plague on my life. I finally travelled to see a Doctor at The Montreal Neurological Institute, who was doing a study on a new drug, Imitrex. I thought I had found salvation at last, and as long as I could take the pills during the aura, it seemed to hold off the headache. But waking up during an attack still had me in tears, and more than once, on the brink of suicide. No-one understood the terror of going to bed, and thinking about what was about to happen. When Imitrex injections became available, I used them to the maximum limits until my insurance company refused to pay for them anymore. Then, as mysteriously as they started, in 1999 it just....stopped.
No headaches, no auras......it just ended.
Until a few months ago. It was amazing how after 5 years, the first aura brought back the memories of the agonizing pain, the sleepless nights, the terror of subjecting my family to once again watching me cry, and pace the halls, and bang my head against things, all the while crying, and screaming, and being unable to make them understand.
My wife spent most of today reading this website, and for the first time I think she understands. While always being supportive, and trying to keep the kids quiet, and giving me the space I needed, anytime she had a headache and called it a migraine, I thought She really doesn't know.......
Today I think, for the first time in over 30 years, that she realizes what I had been going through.
For this I thank you.
And tonight, when I tell her that once again, I'm afraid to go to bed, I think she'll understand.
My name is Gary, and I Am A Clusterhead.
Hey folks, you all have my sympathy. I feel you! I am a 48 year old male living in Sacramento, California. I have been plagued with Cluster Headaches for over fifteen years, off and on. The condition has had a tremendous impact on my life. In 1999 my condition went chronic. Since then I have experienced anywhere from one to ten occurrences daily. Some short episodes while others lasting up to a couple hours before any relief is possible. Religiously I awake with the worst infliction sometime during the night. I call that the level ten. I then usually have one or two throughout the day, customarily between a lesser five and eight range. Sometimes the headaches visit in predictable cycles or patterns, while at other times the onset is more random. I have noticed that fluctuations in the barometric pressure have a significant negative effect on both the duration and frequency of my headaches. Has anyone else noticed a similar connection? Anyway, I pray for you all. I hope you find relief.
Mike Burruss
Been a sufferer of CH since my early twentys, now 64. Tried every drug until imigran,got instant releif but it messed up my blood pressure. now the doctor will not prescribe it to me. I have to live with it every two years and lasts for 4 months at a time.
Just wanted to say thanks to the person who thought up this site. i thought i was the only one in the world with these damn headaches.Im sorry to here other people get them because they are a pain in the ass,but its good to know im not alone.
Hi all, for the post I sent yesterday with my email address as skydivingdan@yahoo.com, I had to change it to az_skyjumper@yahoo.com. Hope to here from someone soon.
Blue skies,No Demons
Dan
I am the wife of a chronic CH sufferer for 28 years. At first my husband wanted me to stay with him during his episodes which was difficult as we had 5 small children. Now he prefers to be alone. Our children grew up with the fear of seeing their father suffer this all-consuming pain and never knowing what to do about it. They learned to be quiet and compassionate during these episodes. They used to last 6-8 weeks, and have gotten progressively worse over the years. This last episode lasted 8 weeks (Feb - April) having spent 1 week in the hospital due to imitrex overdose (taken out of desperation)and dehydration from chronic vomiting. Now the monster seems to have mutated to resemble a migraine, in that it lasts for 2 days without cesation, and of course, the vomiting for 2 days. I goes away and he spends a week preparing for the next onslaught. This leaves him very weak. He has stopped talking to me. He has stopped living. I feel like I have become indifferent. We can never make plans to do anything, as they always fall through. He missed our daughter's graduation party, he can't take any overnight trips. How do other people live like this? I feel selfish thinking this way since he is the sufferer. Is this normal?
I have been suffering for three years now, and after the exhausting trips to the handfull of doctors I am ecstatic to have found this website. It is very hard to study for a degree in college at 23 with a constant pounding in my left temp...and nothing to help it and nothing to change my dialated eyes. Thanks for all the info. This is really a blessing for my exhausted eyes.
Hello all,
Clusterhead here. My Demon started in my 20's right side only they peak in 15 min and last 47 min. I had them for 11 years then I went to kansas city school of med. There I had a Japanese doctor. He gave me 6, 3cc shots of an antistatic and stairoid. Then after that I did'nt have any headaches for 9 years. Thereeee...baaack....
If I get ice on them quick enough it stops em till I have another one in an hour or so. Well just thought I would introduce myself to my fellow clusterheads. Thanks for your time.
SkydivingDan@yahoo.com
P.S. Would like to here from
anyone Phoenix area or beyond.
I have been a cluster headache sufferer since my early 20's;in the 70's I was told by many doctors, including a world-renowned neurologist that "it was all in my head", and I was prescribed medication ad nauseum, none of which helped me at all. Now more than 25+ years later, I have finally found a clinic in my area that handles people with chronic pain. The doctors are wonderful. They mix homeopathic medicine with moderate medication and they actually care how you feel; I remember one headache I had in my doctor's office, and he would not let me leave until it was gone. I think I finally had an intravenous of DHE 45, valium and something else, but cannot recall the name of it. Anyway, it did the trick. Now, I am again in a cycle, and am going to try Migrainol, because I cannot take oral medication for these headaches any more, because they make me feel so sick to my stomach. I really sympathize with headache sufferers, especially clusters. I am glad to have found this website. I had no idea so many people suffered with these terrible headaches.
the headache is caused because alot of blood goes into the brain and nobody know why. so what about if you go and donate blood. dont you think this will help
I'm so so happy I found this site getting enough information of my 7 years of struggling for cluster headache and too tired of the pain...
I could easy sit and cry to read some of the letters.I have been a cluster sufferer for many years and at the moment I'm out the bout,but god knows I dread the day when they come back .. you always think why me ? what the hell did I do in life to deserve this,you can never explain to anybody who hasn't had them what the pain is like. many times I have thought I can't take his anymore .. even to the point of feeling suicidal .. but please hold on .. it will pass.everyday I wake up without one I think ty lord .. love and peace to you all xoxoxoxo
I can't talk long ,because I have to find a dark place to hide. But the only thing that helps me out with my CH, Is Topamax, a hand full of pain pills, and my dog Cocoa. She sits and watches the whole thing. I wonder what she is thinking for about 12 hours while im in pain.
I just found your site today. I was doing a search on Google and it took me to the Welcome page of this place. As I started to read the testimonies of other people, I just started crying. The more I read, the more I cried. Tears of joy. I thought nobody knew.
Thanks to you.
Every single thing I was reading, I've been living for 9 months now. Yes, I'm a chronic. I found out by chance, after reading a lot about CH. It hasn't stopped since last November. Why couldn't my neurologist tell me? It seems to me that he new what he was talking about and I sort of like the guy anyway, so I trusted him. Now I'm starting to realize my mistake.
Thanks to you.
He told me that we had tried every treatment and that now the only think we could do was pain management. Although I did try 6 or 7 different ones, I now see that there's a few more.
Thanks to you. Now I have a place to go when I get up in the middle of the night. Now I have a place to send my partner when he sits next to me with that hopeless look in his eys. He wants so much to help me and I want so much to tell him that leaving me alone WOULD be the best thing.
Thanks to you.
I still have a lot of exploring to do around here but I'm already sure I'll be a fervent member of this place. Thanks to you.
To those of you out there who are chronics and think that you could help me...please do. And if I can be of any help, just let me know.
Thanks to you.
I have been having CH for 21 years now. I get them every 2-3 years. I never get them at the same time of year though like I have heard some people do. I am having a hard time with neurologists having much experience with CH am many of you. It is so frustrating to read all this information on this wonderful website, and feel like I know more than them. I wish they would spend some time on this site. It is so informative! I came here 2 1/2 years ago during my last cycle. My brother suffers from them too, so I talk to him a lot for my support system. It really helps to be able to talk with someone who feels the same intense pain as you. I am going on 7 weeks now for this current cycle and am starting to go crazy. I was actually dumped by my new neuro. yesterday because I was calling her too much and had my own ideas of how I should be treating my headaches. She didn't like that at all. She tried giving my something called Zanaflex. Has anyone heard of it or tried it? I only tried it for 3 nights, and felt it was actually making them worse, so I quit. She wasn't happy with my that I just decide to do what I feel works for me. I am looking for a doctor I can have a relationship with who understands that I need to have a lot of input. Oh, and most importantly, can actually get me in to his or her office when I am in my cycle!!! They are so busy that you can't even get in! O2 works sometimes if I use it right away, but not like it used to. I have tried Verapamil, prednisone, Zanaflex, Imitrex nasal spray, Zomig nasal spray, Sansert(which I hated!), and something new now called Peri-actin (which is just an anti-hystamine). I feel like what ever works, is only going to work for a while, then it quits!
i am pleased to see that i am not the only ch sufferer in the world; this website rocks . ihave been suffering with this nightmare for 5 years. i gained so much informatin about other sufferers. keep up the good job.
Actually, it is my son, Darren, who is suffering from the cluster headaches. He had them for a year in 2001, and they are back with a vengeance. He is having little success finding a neurologist who knows enough about clusters to treat him. He lives in Newport Richey, FL. He has had a 13 hr. and a 5 hr. cluster, and as many as six headaches a day. He is so sleep deprived, I do not know how he works. I am currently researching for a doctor who will insert an occipital nerve stimulator at the back of his neck. This procedure seems to have a great percentage rate of success. I would appreciate any help or advice.
While my BRAINPAN is being refused service in BURGER KING, Jesuit
priests are DATING CAREER DIPLOMATS!!
paxil
I'm so happy to have found this site; after reading some of the comments other people have made I'm glad (?) to know that
I'm not the only one with this problem.
I have been a chronic cluster sufferer for 18 years now and know how everyone feels. i have also noticed on the web sites that no one in the u.s. seems to care about finding a cure for us. it seems only the europeans are trying to help us. i sure hope they succeed. mike lewis
I have been headache free for 3 years, when they started up again in July 2004, i decided to have a look on the web again for info, what a relief to see all these new sites for us one of a kind freaks, i love the name clusterheads, what else could it be, everything i read, from the other ch's hits so personal, we all live our own personal nightmare, but i think we are some of the most powerful people in the universe, we conquer this monster, don't know how, and sometimes the desperation is more than i want to admit, but i hear in everyones words. Thanks for sharing and thanks for listening, cause god knows nobody around you wants to. lol. Peace to us all. Dar.
god bless this web sight, Im so happy to have found you. my husband started dealing with the beast last year. After three back surgerys they have returned, and I cant cant tell you how hard it is to feel so helpless. But I can say that i have learned to help is to (as hard as it is ) leave HIM ALONE. By that I mean make sure he has what he needs be it cold compress, h20 , blinds closed, etc. Then let him know your thier if he needs you then go. Ive read and watched and have done everything I can to understand the beast, but unless your going through it I dont think you can ever really understand what that pain must be like .And believe me Ive experianced some very bad painfull medical problems myself. But it tears me up inside to when my husband has a cluster!!!!!! All I know is from my experiance, just knowing that Im close by for him helps him, but Ive learned to leave him alone for as long as it takes until hes ready for me . I cant stress enough how important it is to not to feel like you have to touch or talk to your mate when they are dealing with this beast of a headache. By keeping your distance yet letting him or her know your there if they need you is as important as all the meds etc. Its hard I know first hand, you might discuss this with the person when they feel up to it. Not only will you let them know you are tring to understand what thier dealing with , and how much you care, but you can understand your role in caring for your loved one... This is what works for us and I hope may help others who feel so helpless when the beast comes. my best to all of you and thanks for letting me vent. god bless and hang in there!!!!!!!!!
Gret site! I plan to visit often. Thank you for reaching out to us "clusterheads."
I have had cluster headaches for over 15 years. Up until about one year ago, all the doctors told me that I had migraines. I had been poked and prodded, had MRIs, cat scans, x-rays, injections, pills, chiropractor sessions, etc... You name it, they tried it. About seven years ago, a family physician prescribed imitrex in pill form, and four years ago I went to imitrex in an injection. Thank god for imitrex!!! (When it works!!) I've spent many nights without sleep and many days at work in my office with the lights off hoping for relief. About 18 months ago as I was going through my worste bout ever... the injections stopped working for me. Fortunately I am only an Episodic sufferer so I can fight my way through a month of the pain and still maintain my sanity while I am between attacks (during an attack it's no holds barred and I cannot be held liable for my actions). I guess I am worried because my attacks seem to be coming more frequently now than they used to (less time spent between episodes and alot higher pain frequency than they used to be). I used to just lay down and pray for death, but now I think that the monster would find me even beyond death. I think that I scare the hell out of my kids and my wife every time I go through this. I pound on the walls, throw things, cry, moan, scream, and pray for the next "silent" spell in my head. I can't believe this is the first time I've found this web page... it's at the top of my favorites list now and I will be visiting frequently over the next five to six weeks as I am at war with the villain yet again!!!!
Hi! I'm looking for help! I have a TERRIBLE headache right now. I have been suffering for months, on a daily basis, I'm getting crazy. It's good to know that I am not alone.
hello to all my fellow sufferers! i am just getting over a 3-week cycle...today i would say my pain level was down to a 3 on the kip scale...if the pattern follws as per normal i should be free for another year before the nightmare starts again...ive had clusters for going on 15 years now and i know what all of you are going through...so far nothing really helps a lot, but what HAS helped a little for me is going somewhere quiet, dimly lit, and putting something cold on my head...usually an ice bad wrapped in a towel, though ive used bags of frozen vegetables when necessary...mine always hit on the left side of my face and it always feels like my eye is going to burst the pressure is so great...here is a big hug to all of you who need one...((((((((((((((HUG)))))))))))))))))...anyone who needs or wants to chat please feel free to email me at OutCattinAround@aol.com...take care all of you!
Hi It is so nice to finally have someone to talk to. I have the cluster headaches so bad I can't work or do anything hardly. I have a young wife and a premmie baby I had to quit my job and now I can't make it I don't understand how to work. I had Disability Ins. I paid for at work but they want pay because they don't accept cluster headachs so whaat are we to do. I have been to all kinds of Dr. just medication that have all kinds of side affects. How do all of you make it. I am about to my lifes end. No help or ease at all. I am in so much financial trouble I don't know what to do. If anyone has any thing they would help. Please e mail me. Thank you so much. The last resource.
I'm a journalist doing research into migraine treatments, with particular interest in the arterial ligation procedure performed by Dr Elliot Shevel, South Africa. If there are people out there who have had the surgery, or know anything about it, I'd really appreciate hearing from you.
Regards,
Teri
Great site! I have been episodic for years, and just awhile back was given the dx by a neurologist of "cluster headache". Unfortunately he didn't tell me much else. This site is terrificly useful and informative. Keep up the good work!
Much thanks
Andy
It is so nice to have found this site. I have yet to explain the pain, to doctors and freinds alikem however, when I read the suffering from those who describe the "demon", I envision myself in their place. I am with each of you, even though that may not make you feel better.
If you haven't tried it yet, grab an oxygen tank next time they start. If you're one of the lucky ones like me it will chase the whole thing away like a stray dog. I was flabbergasted to say the VERY least. It is a victory you'll never forget. Good luck!
I feel like I`m in a state of perpetual hangover. Then the headache starts........
"This is what I'm good at. I like meeting people, my fellow citizens. I like
interfacing with them."
George W. Bush
September 8, 2000
Comment made at campaign stop in Pittsburgh, Pennsylvania.
paxil
Hi, Nice to see that iam not alone in this world with this problem there are some others who could understand my problem. In Pakistan the doctor still call this pain as megraine.
I had my first cluster headache in 1988 when I was 29 years old. After 16 years I have sought everything from chiropracters, massage, oxygen, neurologists, on and on and on.
I have had only one serious suicidle thought, never did anything. I think of death all the time though, what a relief that would be.
Hi, My husband Chris was recenlty diagnosed with cluster headaches and your site has helped us learn a lot about how to prevent the headaches. Chris went to the emergency room in severe pain and went through a catscan ony to find he has clusters. We know we can not prevent them totally but just knowing how beer and certain foods contribute to them really helps. Thank you from both of us.
Gloria
Hey everyone,I found your(our)site just the other day.Yes I'm a clusterhead,aand have been for 18yrs.Ihave just had another round latley.Its comforting to know there are others
out there.been feeling so alone.I'll come back tomorrow.I really really like the site.take care everyone/Jerry
After suffering from the CH for over 30 yrs., I finally found a Neurologist that was able to treat me with the proper medications. I have been CH free for over 4 years now. My medication list is quite long, but it works for me. Just thought I would share:
(Depakote 250 mg - 3 a day)
(Diclofenac 75 mg - 1 a day)
(Rantidine 150 mg - 1 a day)
(Amitriptylin 50 mg - 1 a day)
(Co Q-10 50 mg - 3 a day)
Remember - there is always hope!!
Never Logged on before So Hi, I'm not alone.
After suffering clusters for 25yrs, I've just had the mother of all - thought about suicide, but I aint got the bottle Plus I love my wife and my first born daughter. I notice there is lots of talk about O2. I can get this from a diver friend, but can anyone tell what mask I need and correct flow rates? My Doctor has tried me on all legel drugs and I have tried the illegel ones. At the moment I'm on Verapamil and Sumatriptan jabs. Can any one help?
Sory I'm sending again I did'nt complete the email but
I've just come back from the doctor where he has diagnosed my symptoms as being due to a cluster headache. I was then directed in to the nurse to have bp taken and blood taken for tests, then out of the door. I wasn't told what it was; how serious or treatable it is; what the implications are. Please can someone tell me what's going on?
Hi, my name is Erin, I am not a cluster sufferer, but the wife of one of them. If I am writing to you today, it is to let you guys know that there IS a natural remedy to this sickness.I found out about it on Clusterbuster.com, it works wonders,and you guys should consider giving it a try, as there is no after effects, or maybe just a good feeling. I know it is illegal to use this product, but is legal to have a husband that suffers and makes other people suffer????
Please give it a try and answer me as I would like to know if it worked for you guys.
It is psilocibin cubenis, in other words, magic mushrooms; taken at a low dose as an infusion.My husband took 3 doses over 3 nights, and his hole cyle has stopped, as well as the pain reduced by 3 quarters.
The first night he tried, he slept like a baby,the next day, only one headache that lasted only 10 minutes, and so on for one week. he got his only headache at a different time of the day, and now, NO MORE HEADACHES....
Thank God there is a solution to this.
Please try, or check out info on clusterbuster.com
Erin
hay all you!!! just picking my brain to day. My life. Well my headaches are gone for now. I wish for ever but in time i will be back with the beast. About the doctors they just can’t stand there is all most nothing they can do to help. The only thing that has helped me is Demerol because it knock me the fuck out!!!!!!it’s the only break i get from them. Doctors only understand what they can fix and if they can not well you all know what happens We need to go over there heads to someone that will listen but who Well life on earth living life worse than death. Well you have to be a Custer head to under stand that. Man it sucks. O. Tylenol 3 seems to work good and it’s fast acking and real cheep Been taking it for ten years it helps
Hi! My name is Nicole and my father has been suffering from cluster headaches for 20 years now. He has just started getting them again last Tuesday after a 2 year remission period. I really think this site is great and I am glad I found it so I can learn more about this condition and how I can help and support him. Thank you. ~Nicole
Boy am I grateful for this website. I am a 43 year old female who has suffered with cluster headaches for thirteen years. I was 36 when I realized these were not migraines like the doctor told me. I had borrowed a headache book from a friend who had migraines. The last chapter talked about cluster headaches and eureka! that was when I knew what was going on (I always thought it was strange that migraine sufferers would tell me that they always sought out a dark quiet place to lay down...an impossibility for most of us CH sufferers).
I dont personaly know anyone who has this so it is very comforting to read all the similar stories and to see how others cope with this. I have learned a lot about different treatments and imediatly feel a little less depressed when I log on
Karen in Baltimore
i,m glad I found out alot of info on cluster headaches. I myself suffer from this symptom. i never realized that this was such a common problem. I could not really find any way of dealing with this. I get my cluster attacks only once or twice a year. I feel badly knowing more people suffer more than that. Thanks for the web site.
Have any of you tried getting rid of the processed foods in your diets? I have suffered from these horrible cluster headaches since I was a small child.As I grew I noticed that they are triggered different circumstances. Certain foods also trigger mood swings and an increase in pain. I changed my diet by ommitting all forms of processed foods for 3 months, then , noticing a decrease in episodes, I experimented by incorporating a canned food item into my diet...the selfsame day, within an hour of eating the foodstuff, I had an attack....of the worst order.Needless to say,I have gotten rid of all canned food , unless to be used for emergency purposes! We truly are what we eat, and, although this may not work for everyone, anything is better than the pain...and who really knows what the pharmacies are feeding us...Peace love and painfree lives...
Now there is a thought!:)
I had a total thyroidectomy on july 2nd. that is the day my ch started,never before have i felt so close to wanting to just die. I have had migrains most of my life and i would rather have ten migraines than one cluster!!!No pain meds work, not imirix, not maxalt not relpax. relpax works on my migraines but not these. I want to get a job but i am not pain free long enough to do my house let alone a job, i am afraid if i dont go to work , we could lose our house. I dont know what to do, they are setting up an appointment with a nuero for me . I pull my hair, push on my head , rock back and forth nothing helps.....
Had 2 bouts of CH in 94 and 00. Guess I started late (I'm now 57) but got diagnosed after 2nd bout. Seem to have anything up to a months "lead-up" to full attacks - feeling rough, sinus problems, Horners syndrome starting to appear at moment and now waiting for the dreaded pain. The neurologist I finally saw recommended rizatriptan (maxalt) and I have some on standby. Anyone else had any luck with this or Sinusbuster (I've just ordered one)? Or any other way to prevent things developing into a full attack?
i dont know how to tell my story.i am a 31 year old female that has had clusterf_ _ _ _(my nick name for them)for 19 years.they started when i was 12 years old.i have been on every medication IN THE WORLD!!! every channel blocker,antidepresent,pain pill,lithium,topomax,morphine, you name it i've tried it. i was cluster free for a year untill this past may 2004. i actually thought they may have left for good lol. here it is 3:40 A.M. middle of july so im going on three months. i feel like im going crazy. i have three children and my husband just does not understand. he goes to work in the morning sticks me in a dark room and thats that. i have had no sleep and am going through 2 tanks of oxygen a day. the 4 and 6 year old are sreaming there hungry, im puking and my 11 year old is on the phone calling grandma to come help mom. my mom is my biggest fan, i thank God for her. she comes no matter what! she drops everything and is here to help but still this is what i am told by people. i no only we can understand the pain but for the people that help us like my mom, she will still say after 19 years, there is no reason for me to be here ive given you some meds your on oxygen what can i do . well sometimes just a hand to hold when you are soaking wet and shaking all over or we you truly wonder if yuo will make it through this one more time. i had someone tell me once that chid birth is the closes you'll ever come to death but know your going to live! NOT TRUE i had three babies over 9 pounds and would do it all day. CLUSTERS are the closes to death ive been and none i was going to live.thank you all for sharing your stories with me, i wish you all the best
Deanna
I found this sight about two months ago.At that time, I was into my 18th month of suffering from cluster headaches.(waking up 1-3 times a night with the pain starting at my nose,going around the eye and to the temple.)
I am celebrating this week--as I have not had a single headache in two weeks. I can only hope I never experience another bout.
About two sweeks ago my doctor gave me welbutrin xl. I started taking it right before bed. I don't know if this was the "cure" but I can truly say I am going to keep taking it.
good luck to others who are suffering tonight
I am a 24 year old father with 5 years of experience with cluster headaches. I have yet found anything to help with the suffer and pain. I get my visits every year around July and ending in late August. I had just recovered over one about 30 minutes ago wondering what i can do to help this madness. Then, i found this site.
I had company over this evening visiting feeling the pain getting ready to erupt in my head. My eye starting to squint and fill with water. Rubbing my temple up and down pushing harder and harder. I tell my company i have to go because of my pain. I go downstairs to my dark room and begin to moan and roll around squeezing my head as hard as i can. Can't breathe through my nose. I am sweating. I am so frustrated that i can not do anything anymore but hide in my room like a little kid wondering when it will go away! My wife comes down to check on me and asks me "Is there anything i can do?" I said yes get a bat and hit me upside the head as hard as you can maybe they will never come back. She knows there is nothing she can do. I told her to find something to cure these headaches. My kids know that i am in pain, knowing to leave me alone until they are gone. Two hours later it finally goes away with my head so sore of the pain. I return back to a normal life asking the dear Lord why won't he just get rid of my pain. I pray they will never come again because of my young age, i don't know how many more years i have to put up with this. I have not found anything to help with these headaches. They have cycles as far as when the start. First week they start at 1 a.m., then 7 p.m.,etc. I am always wondering when they will hit again. Any suggestions would be helpful and all of my sympathy for those who have to deal with these unbareable headaches.
Hey guy and gals,
I wrote a couple of weeks ago at that time I was in the middle of a episode I have now been headache free for 8 days after 6 weeks of hell. Towards the end the doc I'm seeing let me try xanax I don't know if they really worked or not but they knock me out really helps with the sleep. Anyone else try these? Wish everybody a headache free night.
Larry
If anyone would like a copy of my essay on Clusters (Gettysburg Review, Spring 2003) please let me know.
I've got avery bad headache now,i try to find information to help me.
I am absolutely miserable for 3 months at a time when they occur, I have had them four times, that is a year out of my life. There have been 2 0r 3 yrs. in betwen them, thank God.Each time they start I think they are never going to end. Nothing I have tried works. If they don't this time, I don't know how I can go on.I have an appt. with the Diamond Clinic at the end of the month, has anyone been cured or helped there? Jim
Here is something to try. It helped me and some others:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
harlie
Hi- My name is RIchard and I have been suffering from CLuster Headaches for about 8 years. I was glad to find this site and look forward communicating and reaidng about this horrific illness. I tried to log on and am unable to log in as they tell me my user name and password is wrong. If anyone can provide assistance please email me.
Thank you -
I am a 51 year old female and have been a CH/Migraine sufferer for many years. Just recently (18 months) my headaches are a daily occurance and sometimes several time a day. In order to get at least 6 hours of sleep I have been taking Zomig as a preventative. 2.5mg before bed. It works most of the time but my "sleeping in" days are over. If I'm not awake and in a vertical position after 5 or 6 hours I will get another headache. I realize Zomig is a "Triptan", as is Imitrex, and should not be taken as a preventative but it's the only way for me to get a little uninterupted sleep. I take zomig at the onset of a headache as well. Thanks for this website and the information it contains.
419
I classify and am very honest with my family as to what degree of cluster I was having. Fortunately on a scale of one to ten I have only had about 50 class 9 or 10's out of about a thousand. At a 9 or 10, even after 12 years I am headed to the emergency room because I can't conceive that I will live through it! Fortunately I have had much better care in the past five years. I don't waste an imitrex injection on something I can cope with. Writing only because my greatest wish is that my doctors of the past could have a class 10 for just five minutes! They would have completely changed their attitude to this true "brain pain". A Cleveland Clinic specialist said it may be the purest form of pain possible. Ice pick in the temple - grinding around - I agree. Glad to see your site!
Gregg
After a 20 yr. stint with clusterheadaches and migraines, I
am now headache free, and no more meds...
sinus buster, it's all you'll ever need and it's legal!!!
Be careful to your medication. Do not abuse it. Good luck!! Thank you very much.
If you have wegners and headahes, please amail, Thanks.
I'm a 56 year old male and had my first attack while a senior in college at age 21. Like so many of you, I thought that nothing can hurt this badly and not be either a tumor,a stroke or something fatal.
My headaches occur every two years with two exceptions. In the early 1980s I had a 3 year break and I am now about 18 months overdue.
Again, as with so many others I wandered from mis-diagnosis to mis-diagnosis finally finding a new local Doctor who identified them the first time I saw him. He started me on prednisone and oxygen. After he re-upped in the Navy for Desert Storm 1, I found a Doctor in Nashville (Dr. Thomas Miller) who also suffered from cluster headaches. His had become chronic and was getting relief with lithium and oxygen.
What a relief it was to find someone who understood intense,white hot, intractable pain. With Dr. Miller I take a "witches brew" of prednisone, sansert, verapamil and
a steroidal nasal spray at the onset of a cyle. I am able to completely stop an attack with 5-10 minutes of oxygen. Oxygen will not break the cycle but it stops that particular headache.
Looking back, I don't know how I was able to handle the pain without oxygen. My experiences were like so many of yours...at times the pain tested my resolve and my sanity.
My doctor tells me that some people outgrow them after age 50. I hope that I have.
If you've just recently started having cluster headaches......DON'T GIVE UP!.....help is out there. I went 25 years before I met another person who also had cluster headaches. Today I met another quite by chance at my local gun club. The discussion began about him stopping smoking. I mentioned that I have not been able to quit yet.
I told him that about 10 years ago I had no trouble giving up alcohol because it was a trigger for cluster headaches. After giving me a surprised look, I learned that he too had
cluster headaches. Other than my doctor, in 35 years I've only met 2 fellow travelers. The fellow I met today told me about this web site. To the developers of this support group...THANK YOU
Robert McKay,III
Columbia,TN
Hi, I'm 29 and remember my first headache at age 6. I have been to every dr, and taken all the drugs, my neurologist had me taking 50mg.Elivil and 50 of zoloft, along with barbs. Nothing really works, I can usually go 3-4 weeks without an attach, they last around a week, good moments and bad. I have (shadow headaches) I like that term most every day. I have found that strong narc. seem to make them worse or I quess rebound. Does anyone use pressure to relive them, it works along as someone squeezes your head really hard, but when they let go it is not good, any advice would be helpful.
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