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Below are the guestbook entries from January 2002. 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 i have been suffing with CH since i'm 18 i am now 43 and thank god i have been pain free now for about a year the Dr i went to see was great he told me to take a combination of 3 drug they were predsione,lithium,and verapamil and within 3 days the pains went away and have not returned. after all theses years of suffering and all the different Drs i cant belive they a finally gone i just hope that it stays that way because i dont think i can deal with then if they came back there were time i really wanted to just kill myself and no one really understands what we are going through some people say how can you get like that over a headache that really drives me crazt when they say that i tell them its not a headache and how would you like it if i got a knife put in under a hot flame for and hour then stuck in in your eye because that what the pain feel like to meANTHONY <APARRIN248@AOL.COM> BROOKLYN, NY USA Thursday, January 31, 2002 at 20:58:11 (EST)
whats up my name is Bill. I am a 21 year old cluster sufferer. Sucks dont it. I am just looking for more info for treatment. Clinics, specialist etc. Anybody that can give me more treatments than my dumbass doctor. Iam sick of hearing all these MD acting like dumbshits about my headaches asking me what I want to do. If any of you have some info, I will greatly appreciate it.
two days ago i was told by my g.p. that i was suffering from c/h's, i've never heard of them before (almost 58 years old). He told me i probably wouldn't have another one however if they persisted he would send me for an m.r.i. scan. in the past i have suffered 2 heart attacks and had a 5 ways heart bypass, but this is insignificant to the attack on my head, i've only had 5 attacks and i am horrified to read all the case histories on your pages. i wasn't given any medication, one question i forgot to ask my g.p, is what is the cause of these monstorous h/a's i will keep reading and perhaps i will come across the cause.many thanks for your page.maureen
Hi again, I'm wondering if any other sufferers have a history of back problems as well. Lower upper back pain shoulder pain, etc... Chiropractor visits... ibuprofin.. muscle spasms... you know the drill... I have and I read a book a couple of years ago that helped me TREMENDOUSLY and I recently dug it out and to my amazement, there is mention of Migraines (but not cluster) and other tension type related headaches.. I'm rereading it and following the principles again and last night was the FIRST night I've slept well in a long time. No CH today as well. I can't help but wonder if this may be a possible answer. The Dr. who wrote the book is: Dr. John E. Sarno, M.D. its called Healing Back Pain The Mind-Body Connection. It helped me tremendously and I have given copies of it to friends and family who it also has helped. I would love to hear comments and feedback from ANYONE who has also read this book and has CH's I just want to make it all stop and am open to anything that will do just that. I think this has helped me thus far. Time will tell.
Hi my name is Shannon and ive had cluster headaches for 14 years now. Im in a cycle that started in November and still hasnt stopped. Im about at the end of my rope. I cant work and doctors dont help. I cant afford imitrix. Last night i went to the er and all they gave me was oxygen and the doctor chewed my ass because cluster headaches are not an emergency and i should see a regular doctor. Yeah im gonna see a regular doctor at 1 in the morning when ive been in pain for over 2 hours and it wont stop no matter what i do. Ive been to countless number of doctors since i was 12 years old. Well thats enough i guess if anyone has any advice for me i would really appreciate it. I have about 2 cycles ayear that last for about 2 months at a time with anywhere for 1 to 6 attacks a day. My email is sth71@hotmail.com Thanks.
I Just came from the doctor yesterday. After switching medical groups, I now have a referral to see a neurologist. Let’s hope he’s open to the possibility of CH. Just a few days ago I found this web-site and have been reading almost non-stop (It’s great). It also made me think what could have been the cause of these problems. I was in a car accident about three years ago and hurt my knees, back, & neck pretty bad. I was on 4-5 800mg of ibuprofen a day for almost a year. I went to the doctor with stomach pain and headache (October 2000). I have a high threshold for pain and always think it’s just me or I can fix it but I can’t. No one understood the episodes because of the frequency and pain levels I express and seemed to be unknown. I was told to stop taking the ibuprofen that it was causing ulcers. This is when I started on my path trying 8 medicines over the next few months. . I was giving all sorts of medicines and nothing seemed to work. After 4 months it just stooped. I didn’t think that any of it actual worked but my previous doctor seemed to think it was all taken care of (so did I until now). I now think this was my first episode (October 2000) and it lasted for 4 months. Until recently I didn’t think much of it. I’ve had headaches but didn’t really think anything of it during the 2001 holidays due to illness and stress. Unfortunately I was stubborn and should have pushed harder when I did see my new doctor in October 2001. In December 2001, I noticed a significant increase in frequency and pain (Hum, CH?). It just dawned on me a few weeks ago that I probably have CH again and maybe it’s an annual occurrence. I really think the CH was always there since the accident but was masked by the high does of ibuprofen I was taking. Does this seem like too much of a coincidence or does this seem as possible I believe it’s my reality. I get so frustrate, angry, and depressed all at once that I feel alone and lost. Many of the symptoms that I have read about seem too real and scary to know that it does exist but I’m glad I can now share my thoughts. Please feel free to let me know where I am and if what I am having seems like CH.
I am interested if anyone on this site has the same type of headaches that I have. Not sure if it is a cluster headache although I have them most every day.
6 weeks this time ..banging my head on the wall..hitting it with a spoon..trying to drive the demon out.Doctors who have heard of cluster headaches but never treated anyone for them..friends who avoid me in my blackness..weak from lack of sleep..disorientated and unable to run my business..
alone with the devil who ambushes me every day no matter what I do to try to avoid him..wishing somw kind soul would shoot me and stop the pain..
Well you all know how it goes and somehow we find the strength to face another day..the remissions are beautiful ,life is beautiful ,the pain a bad dream..
If I had a magic pill for it I'd share it with you.
Hi! My name is Wayne & I have suffered from cluster H/As for a little over 8 years. My clusters are episodic, began Dec 1993/Jan 1994; 18 month remission, then episodic (2-4 months duration, with similar length remission breaks) since June 1996. I have tried ost treatments & find Imigran (Imitrix) injections/tablets the best aborter of attacks. Had an MRI in 1996 as part of diagnosis - was found to have a minor pineal gland leasion, benign, & not thought to be a contributing factor by 3 different neurologists I have seen. My current episode began in Sept 2001 & has continued to present (i.e. 31/01/02 DD/MM/YY). Brief remission in December (a few days). Episode began sporadically building to 4 6-7 hourly attacks a day, reducing after 6-8 weeks to 2-3 atacks p/day. Only tried O2 treatment for first time in December 2001 & found this fantastic, though taking of Imigran prior to O2 therapy seems essential to avoid early return of H/A i.e. insdie 2-3 hours. Spent three days in hospital this week on saline drip & attacks diminished to 1 every 24 hours - milder pain & quick abort with O2. Back home, attacks have increased to 12 hourly (dammit!). Have come off Lithium which seemed to work as a propelactic for 2 years or so, and am back onto Amitriptylin (25mgs p/night), & course of Indomyacin. Just started this today, so no ideas as yet to effectiveness. I would be really pleased to hear (or know) of any other Clusterheads who have been diagnosed as having a pineal region cyste/lesion. I have wondered - & said this to my Dr. today - whether, since the pineal galnd is responsible for neurotransmitter production i.e. melatonin, the presence of the cyste on my pineal gland could be disrupting production/flow etc. of this neurotransmitter. Lastly, let me say how thrilled I was to discover this site devoted to cluster H/As. I often ponder the what the psychological effects of being a clusterhead are, not too mention all the medication we take, try etc., as well as the recurrent pain. There are times I really feel like an invalid-hypochondriach. I get to hate the frequent vistits to the Dr., hospital, pharmacy for medications, not too mention the variable impacts the H/As have my what used to be my daily life: down times with a H/A at home, on holiday, at work, etc. I found early on that if I undertook exercise for example, during an episode, I invariably got a bad H/A soon afterwards. Consequently, during episodes, I can't/don/'t & or limit severly, the exercise I normally do regularly i.e. swimming, cycling, running, playing field hockey. Anyway, thanks for the great info & experiences posted on this site. I will be a frequent visitor here-on-in. By the way, I am a 43 year old male English secondary (High) school teacher. My wife and I, Zaleha, have two children: a girl, Sherwani aged 6; and a boy, Alexander, aged 3 1/2. Cheers & fond regards, Wayne Stagg. (email address: wanijean@brunet.bn)
I have had headaches for a long time. My wife gets them worse. Medication worked only a little. I found something else that seems to work great. It has helped me about 60 - to 85% reduction. Feals great.
My episodes rate 9 for pain, last 4 - 6 weeks, nightly, predictable. I can't believe there's not an organization working on pain relief schedules with HMOs and their middle ages approach to 1/3 and 1/2 dosages for sufferers. If we could only get the HMOs to step into the 1980s or 1990s on pain relief, we'd be able to see the light at the end of the tunnel. No one seems able to stop CHs, so what is all the opposition to controlling pain???
Hello,
I just wanted to say that I one of the very few females that suffer from Cluster Headaches. I have suffered from these headaches since I was 9 years old and I am now 37 years old. My husband is very supportive with me when I suffer from my headaches, but as usual, he can not really do anything for me but watch as I suffer. For all of the typical sufferers out there is there any other women out there like me who suffer? If not I still like to know that I am not the only one out there suffering from these headaches. I am in the middle of my cluster period right now and I feel that I can't take this pain any more.
I am so very thankful for this site. I believe I have been suffering from CH since I was a teenager. I am 37 now, and I went almost 3 years without any attacks. The past couple of weeks have been brutal. Last night after a trip to the ER, a shot ot liquid ibuprofen, Morphine and a percocet I could still feel the pain. I've read so much info today on clusters that I am both overwhelmed and yet, comforted in just knowing there are others like me out there. I'm very afraid. I'm afraid that I cannot handle this kind of pain in an ongoing situation. I have an appointment with a Dr. today and will discuss all of my findings here and my past history with him. For once I feel I was diagnosed (by self). However, one thing that keeps happening to me on top of all the rest of the symptoms is the next day I feel almost "beaten up" I actually have VERY tender spots on the back of my head where the pain was and down on my, well, lower back I think my muscles may be going into spasm from the pain but it hurts so much in my head I don't think I really feel the rest of it. The other night was the worst attack I've ever ever had. I thought perhaps it has been so long since the last one... but I know it was the absolute worse one to date. I truly thought I would die from it. I'm so very afraid of another one like that coming on. I'm so thankful I have found this site and others who truly know what this is like to go through. Thanks for being there
,hi. my nameis bob fair.i've had ch 2years now.would like to chat to fellow sufferers if they feel same,thanks.
I am so very glad I found your site. It is very educational. I have had headaches continuously for 4 years. I recently visited w/a Neurologist and he stated that my rebound headaches were migraines. He had me take Prednesone to get off all analgesics along w/Imitrex. I am headache free. However, I also visited w/a Naturopathic Physician and went off all wheat & sugar products. I have awoken WITHOUT a headache for the first time in 4 years!! I also read in a Martha Stewart pamphlet that if, at the onset of a headache, I rub Rosemary Oil on my temples it could relieve headaches. It has, to some degree. The Naturopathic Physician suggested I read "Are You Sugar Sensitive? Potatoes Not Prozac" by Kathleen DesMaisons, Ph.D.
All I know is that my change in diet, along w/drinking (or trying to drink 64 ozs. of H2O, is working.
Cluster headaches and migrane are horrible. I do have them so frequently, so frequently that sometimes I which I were dead..Somedays it starts behind my eye, others on the side of the head, others on the back part of my head. Where ever it starts is terrible. Sometimes I have nauseas, others I actually thow-up, feel week, cold, I want to scream and scream. I get them since I was 14 years old. I was told that by age 45 I would not get them anymore. Haaaaa. I am 53 and still get them as bad as the first time. I went to many doctors, had hundred of tests, tried acupunture, but nothing could help me. As years passed away I found out that some foods are the worst triggers: chocolate, wine, some cheeses, food sweetened with corn syrup, red and yellow food coloring, soft drinks, cold meat, chinese food. You may think what do I eat? I kept thinking of that a lot too. Finally I came to the conclusion that I have to cook my own meals, eat vegetables, fruits, drink lots of water. No, I am not a vegetarian, I love meat, chicken, pork chops, fish, etc. They give me no headaches. Just check what you eat and youwill get less headaches. And if I get a CH or migrane, I take 1 exccedrin migrane as soon as I sense it is coming. Usually it helps me a lot. If I wait too long, it will not work.
HELLO ALL! I must say this website is GREAT! I'm so glad to have found you all! I'm a 33 yr old female who was diagnosed with CH's at the age of 16. I get them every 2 years or so, they last for almost exactly a month, and they usually appear every other day at the same time of day. I've had them last from 30 mins to 3 hours to all day. The day long attacks will be full-blown pain for an hour or so which will turn into shadow pain and back to full-blown. Each year the cycle is a little different but once the pattern establishes itself I can count on them like evil clockwork. I experience all the classic syptoms...often being pulled unhappily out of sleep, hot and sweaty for no (good) reason, right eye watering and red, right nostril alternately stuffy and runny, and THEN...that horrific, gut-churning, cry-out-in-agony-I-just-wanna-kill-myself-to-get-away-from-it, white-hot poker pain which is just the embodiment of Hell itself around my right eye and temple. Oh, and the perfect bliss when they're gone whether it be for a moment or a year. NOBODY but we sufferers can even begin to concieve of the misery...what other type of pain would make an emotionally healthy person truly suicidal?! The weird remissive aspect of this syndrome along with the fact that as an adult I've lived around the country and have had inconsistant healthcare combined with the fact that I'm a competitive athlete who ABHORS medication has left me more often than not to simply suffer through these nightmares either unmedicated or desparately choking down completely ineffectual Ibuprophen in a ridiculous attempt to blunt the pain (ha). And yes, I have spent more than one episode in an ER room during which times I have noted the effectiveness of Imitrex and Demerol. Now that I have finally settled down logistically and believe that the Demon will visiting me w/in the month (his shadow has been lurking lately), I'm presently seeking a knowledgable physician and looking forward to long-term treatment! Let us hope that someday somebody can figure out just what these godamn things ARE and fix them! Well, I just wanted to toss my two cents in and let you all know that it's really nice not to be alone. HANG TOUGH !!!
Hi fellow Ch suffers, Im 41 yrs old and have had the demon in my head for 12yrs,thought i was goin to die at first pain like this must mean the end is near.
Tried just about everything ergo,lithium,inderal,oxygen, just had my worst one two nights ago lasted 5hrs ended up in the er and they gave me a drip with lagatril was pain free for 15mins after treatment(bummer)
had been told about prednisolone and started taking 36hrs ago and no CH so far and can't feel the demon lurking in the background, have found lithium works but keep off that shit causes you tremors etc not good. My ch's have been running in cycles of four years between bouts and can have 6-7 attacks a day, oxygen stems the attack during the day when you are able to get them early, the night horrors are to aggressive to be relieved by the oxygen. hang in there guys the sun comes up in the morning and if you are to endure the massive pain of ch's you can get through anything
you are strong brave people keep on doing what ever makes you feel good, someone please tell me prednisolone is the answer and it's effectiveness lasts
Hello, all.
I'm Sara. I've had CH since I was a little kid. I remember my first one when I was 3. I'm also autistic. They say autistics don't feel pain. Bull. Crap. We just don't usually tell anyone, and people expect us to rock, pace, etc anyway.
Because of my odd neurological wiring, the meds that are most commonly given react unpredictably in me. Some cause seizures, some cause extreme disorientation and gaping holes in memory. Some work opposite to what is expected. Some require double or triple the dose to have any effect. Some don't work at all. Giving me a new med is a gamble. I have given up on finding a preventative med that works without the danger of extreme negative side effects.
The only ER treatment that works is demerol, but the paranoia about this class of drugs makes getting help next to impossible. I am severely allergic to NSAIDS, which are the meds the ER push the hardest. I've had some very close calls with anaphylactic shock over even aspirin and naproxen, and I'm not interested in having that happen again. Amazing how they just won't listen.
I try to treat them at home if I have meds. I try the hot water bath first, try to meditate (imposible most of the time), and if those fail, take percocet and hope to hades that it actually works. If it doesn't work for three days of this, I start taking prednisone. If that doesn't work within another week, then I end up at the ER.
Between this and Autism, work is difficult at best, and I'm frequently under threat of job loss. I find the lack of security, and the lack of understanding very frustrating. But I'm sure I'm saying nothing new to any of you... we likely all face ignorance.
I've groused enough for one night.. thanks for the opportunity.
Sara
Hello everyone; My name is Sonja, I have been only suffering from clusters for the last 2 years, I remeber my very 1st one like it was yesterday. the Doc said " after this you may never have another 1" boy was he wrong. on average I have 1 every 4-5 weeks after the last one. I am now into week 2 of my latest.. I am 36. married, a mother of 2 teenagers & work fulltime ( thought sometimes I wonder how am I fgoing to get through the day). Yesterday I decieded to look on the net to see if there had been any new developments from when I looked about a year ago. boy was I impressed. I spent most of my pain free time looking at this site. although I had a very bad day I felt much better for finding all you fellow painsters. As mentioned a monther of 2 teens, so to use the net I must make on appointment, but I hope to visit this site more often if you'll have me.
i'm 54 years old, suffering Ch since i was 18. i've tried all therapies, including aternative (phyto, homeo, etc.) with no results at all. i'm very glad to found this forum, beause a CH sufferer feels always so lonely and isolated. Only another CH can understand our suffering (sharing pain).Thanks for your excellent idea. Mariaclara.
I was diagnoised with Cluster Headaches this Dec, by luck, in my opinion. I have suffered from, so I thought, sinus heahaches on my right side for years. My family Dr. would always give me antibiotics and suggest over the counter decongestants. This Dec. 25th at 7:00 pm I begged my wife to take me to the hospital. I felt sucidial the headache was so intense. They treated me as if it were a sinus attack, gave me a pain shot and sent me home with an inhaler. Three days later I visted my family Dr., who took x-rays and after much discussion about symptons, diagnoised me with Clusters. I asked why over the last many years of coming in with similar symptons did I just hear of Clusters, she responded that this office now had 3 suffers and all were missed diagnoised. I am now in the down side with only 1-2 attacks per day of a fairly low intensity, thank god. The meds Imitrex and Migrazone work, especially if I catch it in the early stages. I am gald to see that there is a place to discuss this with others who suffer from these dibilitating attacks.
I am looking for sometime of cluster headache group in the Boston area. Does anyone no of such a group? I have started to get CH again after 1 1/2yrs of not having any! I do not think I can take another year of this....I have tried everything possible, but nothing seems to help.
The clusters started when I was a senior at Beverly Hills High in 1965. I've had clusters every year till 1993. For what ever reason they just stopped. Nothing in my life changed that I can attribute the remission to. I exercise regularly and don't do anything in excess. The interresting thing about my clusters is that if they start in January they will finish in February and then won't happen again till next year in March and finish in April. So I get them every month of the year in consectutive months. I have lived in different places in the USA for extended periods of time so no matter what climate I'm in from the winter's of Vermont to the summers of California it makeks no difference where I am. I was so relieved in 93' when they went away, I thought great,now I have the rest of my life free from that horrible pain. I thought I just out grew them or something, boy was I wrong. They started again on New Years weekend 02' I was so supprised and thought well this is just a normal headache but as you all know there is nothing normal about a "Cluster". The first ones for me are generaly short in duration lasting only a few minutes but as the days pass they last much longer. Sunday January 20th I awoke at 12:45 AM to what was to be my first major cluster in 9 years. It lasted all day Sunday I didn't really get out of bed till Monday morning when I went to work feeling completely drained. My co-workers commented that I didn't look to well.When you tell people you had a headache they assume you had the normal garden variety--little do they know. January 24,02 I had another attack at 9PM and couldn't get out of bed till 10AM Friday after a night of rocking back and forth with my biceps over my head squeezing tightly as if that will help. The pain is so intense that it knocks me out for a half hour and then I awaken again and it starts allover again. This is the first time I have sat down and written about this to anyone. I have to say that I have thought more about suicide since the first of the year, but i couldn't hurt my mom like that. I figure I have another 40 days or so of hell till next year. I had clusters for 30 years or so, one thing is for certain I'm 55 now so I figure on the outside I have a max of maybe 25 years left, what a thought. I keep telling myself I'm glad I don't live in a highrise. Good luck to all of you and God Bless.
I am the wife of a CH sufferer. My husband & I just found out about these headaches 3 days ago. We are relieved to find a name for the Demon and to know he is not alone. I think he's been having them since his 20's and just turned 50 this year. He usually has 2 bouts a year and they seem to happen in the spring and fall or early winter. I have seen what they do to him and feel really really bad for him. 2 years ago he was diognosed with a benign bone tumor that deteriorated the bone above his Left Eye and a small portion of his scull. He also had a cyst the was by his Lt eye. He had surgery and got everything taken care of and had no real headaches for 2 years. Then all of sudden he had a excruciating headache just like before his surgery, just over his Left eye. At first he thought it was a sinus headache (thats what he's called them till now) but with his recent history we made an appointment with his surgon to get him checked out, in case the tumor had come back. He had a CT scan and we ran to the Dr. with them. No the Dr. said the tumor wasn't back!! Yeah!!! We talked to him about these headaches and his associate said it was classic for Cluster Headaches. The Demon does have a name. Headaches are not this Dr's specialty he suggested we see a nurologist or internist. We made an appointment with our Family Dr to discuss what to do. He aggreed they are Clusters and gave him a pill called Zomig. (the dr. had him take one right away) Has anyone ever heard of that drug? And some prednisone for a rash he had from the antibiotic. Well the Zomig tasted like crap and made his ears hurt. He doesn't know if it works or not cuz he wasn't haveing a bad one at the time. Now looking back he was haveing clusters along with the cyst on his (Left) eye and skull tumor. I have some questions for anyone that can answer them. Is it common to have a regular H/A before the bad ones stike in the night? Is that how you know its comming soon? Is it common to have a regular stress H/A after the series of bad ones are done? He had a regular type headache 2 weeks before the first one hit and then from that night on he gradually had more every night. Then they let loose of him after a week and since he's had this stress H/A. Does the cycle include these before and after H/A's? Should we see a neurolgist? Not sure what to do, but it sure is nice to have some people to relate this to! He's absolutly wiped out after fighting these things! I'm sure you can relate. I have regular old migraines so I sort-of know, but not really, what it feels like to want to rip your own head off till their over. I take Inderal for a heart condtion and I haven't had one in over 10 years! Any info you have would be great. Thanks for listening. Pam
I am finally, after 2.5 months of CH's, pain free. It really feels wonderful every time this torture ends. Anyway I wanted to take this opportunity to thank the maker of this site as well as to the family of CH sufferers I found here. Your kind words, advice and support have made the pains much more bearable and given me the strength and tools to fight it. I love you all and very much treasure your friendship. Please feel free to contact me anytime if I can be of service to any of you. Thanks again!
Hello everyone. I am a 46 year old man, who had a few isolated "migraines" growing up until I reached my early 30s when they exploded into full-blown cluster headaches. I have episodes year-round but seem to be sensitive to the seasons, since as soon as the hot weather hits, so do my daily, multiple times a day, clusters. Each year they seem to start earlier and end later. I also suffer from bipolar disorder, and many of the meds I've tried or am currently taking for that illness have also been suggested for reducing the number/severity of CHs (lithium, neuronton, lamictal, depakote, etc). Obviously they don't really deliver enough relief, since I still have the attacks. Currently imitrex or maxalt-mlt provide the most relief, and my doctor also gives me percocet, which doesn't act fast enough to do much for the CH itself, but does provide relief for the rebound headache I always get from the imitrex. One neurologist I saw was a believer in 'non-medical' (if that's the right word) treatment, and had me try vitamins/minerals, O2, herbs, no caffeine, drink gallons of water, etc. etc., with little effect. I'm now seeing a neurologist from a large university/research hospital clinic, and am try periactin, which has provided some relief. I have an loving and supportive family, but even they don't seem to fully understand the enormity of the attacks. They are so unique there's little to compare them to when trying to talk about CHs to someone who isn't a sufferer. The most typical and illustrative of these exchanges is when they ask why I am bang my head against the wall/floor when I already have a headache. I hope my discovery of this website will provide me with the type of support group that just isn't available here in Connecticut's "Quiet Corner". Zip
I am in the midst of a cluster headache bout as I write this. (In fact I've had one for the last 45 minutes or so.) I've had only one other bout, and that was over ten years ago. They started innocently enough and I thought they might be migraines (I'd never had a migraine before, but from what I'd heard, my symptoms seemed similar).
After the headaches persisted for a week or so, I sought medical attention. My doctor sent me in for an MRI (which came back negative) and referred me to a neurologist. In the meantime, she suggested that I might be having "cluster headaches". Of course, I'd never heard of 'em (I was sort of hoping for something a little more impressive sounding). She told me to take 3 ibuprofin tablets as soon as I felt a headache coming on. In the meantime, the neurologist she referred me to couldn't see me for 5 weeks! I figured if I had a brain tumor, I'd be dead before I got to see her!
Anyway, the ibuprofin worked every time. I started keeping at work, in my car, by my bed, on the coffee table, in my studio (I'm an artist), everywhere! My bout continued for another week or so and then just...stopped. What a relief! I went in to see the neurologist anyway and she described my symptoms PERFECTLY. She asked if they felt migraine-like. YES! Then she suggested that it probably felt better for me to walk around with the light on instead of lying down in a dark room as migraine suffers do. YES! She nailed it! It was such a relief to know that I was properly diagnosed. She gave me a prescription for a seven-day treatment program of medication, but I never got it filled since my headaches had ceased by then.
I found out that my dad used to suffer from cluster headaches when he was in college, but had not suffered since. My first bout was when I was 26. I'm 37 now, so I consider myself lucky that I've only had two bouts and that they're treatable with over-the-counter medication.
My heart, hope and support go out to those who suffer more severe episodic and chronic bouts with this debilitating condition.
Steven, Sherman Oaks, CA
I have been a headache sufferer since age 16. Originally diagnosed as migranes, then later as sinus problem, it was not until I was 38 that we finally zeroed in on what has proved to be the appropriate diagnosis. It came after a 2 and one-half month siege of constant pain in varying degrees, loss of 43 lbs, and multiple trips to emergency rooms for injections of Demerol. In one emergengy room, an young intern gave me Inderal. It was the "Miracle Drug." For the first time in more than two months, I was free of pain. Wow! I had almost forgotten what it felt like to be pain-free. I had been sleeping propped-up on a TV armrest pillow because it was more painful to lie down. I lived alone, and was unable, for days at a time, even to shower or prepare meals. I was literally wasting away. Since that time I have taken Inderal[Propanolol] everyday as a prophylaxis. Recently, my new inernist switched me to Labetolol. Both are beta-blockers, and serve the same function. I also take a combination of drugs for hypertension. As a backup, I have been entrusted by my primary care physicians(three different ones over a 15-year period)with prescriptions for Demerol. I request and receive script for an annual supply. I have estimated the need for 50 tabs of 100 milligrams over a 12-month period. There is always a considerable amount left at the end of that time. When the expiration date arrives, I simply return the bottle to the doctor and request a fresh script. With the daily dose of the beta-blocker, Labetolol, and the judicious use of the Demerol, my life is managable and productive. Moreover, I have learned over the years what the "pain-triggers" are for me. They are: MSG, red wines, Camembert, Brie(semi-ripened cheeses); and, ocassionally: smoked meats(e.g. pastrami), chocolate, chopped liver. In addition, a non-stop flight to the East Coast also triggered an attack. In those rare instances just described, I know not to panic as in days of yore, because the Demerol is within arm's reach.
I am most appreciative of this site. I hope very much my sharing will help some, if not all, of my fellow-sufferes. Only those of us who have experienced and continue to experience this hell know what it's like. We are indeed kindred spirits. Bless all of you!
love this site. I just started having these attachs. I have just had my second one. so yup i am up and don't want to go to sleep.I just hate to be woke up like this. any way It is good to know i am not crazy or alone. Thanks again for this site. Evelyn
Although I haven't received the final word on my headaches from my doctor, I pretty sure his going to confirm his initial diagnoses of cluster headache. I match all the symptoms except for the droopy eyelid. I've hardly ever had headaches in my life then suddenly last week I started making up for it big time. I have never felt such absolute dread about when the next one will come. If this is going to be a regular part of my life, I really don't know what to do.
I certainly identify with all of you. I suffered for 13 years starting at age 16. Last month when my cycle began again I decided to try Phallenx. It stopped the cycle immediately. I understand now it will prevent it to. I am happier then I have been for a long time. Lesley.
I´ve had this thing since I was 18 (now 29), but diagnosed correctly only after my 21 bday. Hell comes almost every second year, lasting for over a month almost everytime. I´m currently starting my first event of the millenium (!!!!), but this time seems that a combination of Prednisone and Verapamil prevents the attacks since the first day. Ask your doctor if it fits for you, but it is working for me!
The amount of the flow per min. is the most important factor !!
Just like you I also have CH ,and I have tryed everything out there,
until a Dr. told me to try oxygen and told me to set the flow at 6 to 8
leader flow. I did this and it seemed to help, but only help I took it
on my own to set the flow up to 10 to 15 leader flow this made all the
differance in the world, the headache went away?
All this after 47 years of trying everything else. I hope this helps
you so far everyone I have told this to, it has helped and I mean 100 %
Thank you Ludger Lucero in Albuqerque NM
PS works in min.s
I'm a 38 year old female that have been suffering with CH since I was 15. I had been misdiagnosed for over 20 years, ranging from sinusitis to sinus infection to 'it's just a bad headache. But I knew it was something else. I've seen people with bad headaches and even migraines and their symtoms were not like mine. My cyle is every two years. Three years ago, I was recommended to a headache specialist who diagnosed me with CH. He prescribed Imitrex nasal and Amerge and it seemed to work wonders. I was pain free for three whole years.
BUT, guess what "they're back". It woke me up last night about 1 am and lasted about 2 hours. Then it went away and I was able to fall asleep reluctantly. Then, I woke up this morning about 7:30 am and another bout hit me. This is the worse pain I have ever had in my entire life. I can't do ANYTHING!!!!! The cycle starts out with about 1-2 a day for about a week and progresses from there until it starts hurting all day everyday for about 2 weeks and then it's gone for 2 years (usally anywhere from December to March). My eye sweels and waters
The vein on my right side is bulging, my nose stops up and then starts running. It really does feel like a little man with a chisel is inside trying to pick his way out. No one really seems to understand the pain. Every one has suggestions as to why and what I should take. But so far nothing helps except the Imitrex. Thank Good for it and the doctor who prescribed it to me. My doctor told me that CH are one of the top four most unbearable pains a human being can suffer and I KNOW HE's RIGHT. This morning I just squeezed my head and shook it and
drunk cold water and prayed and prayed and did everything I could think of. Thank God it finally went away. My doctor called in a prescription for Imitrex today and I just got it filled. Thankfully, no headaches since this morning, however my head has been feeling a little funny and I've been a little weak. But I'm praying for healing for you all as well as myself. Thank you for this website.
I've been a clusterhead for just over 11 years. A few years ago i started going into a cycle every other year....and sadly this is the year for me. Hey at least I had a nice long remission. I feel for all folks that have to go thru this.
I have been suffering with cluster headaches since I was in my early twenties. I am now 45 and the intensity of the pain is the same as it was in the beginning. I remember going to so many specialists in the begining. It took ten years until I was diagnosed as having cluster headaches.
So far, I have been very lucky in that my headaches seem to cycle every three or four years with a session lasting about six months. During that period I can have as many as six headaches a day and some days the pain never stops completely.
You are all well aware of the intensity of the pain involved with these headaches. Dealing with that pain is the biggest issue. A month or so ago when this session began I was surfing the web and came across this site. It was truly a blessing. I have always felt so alone when it came to these headaches. So tired of people telling me to take an aspirin. Finally I found out there are a lot of people with CH. I sat and read for hours that day with tears of joy and relief at finding a place where people actually understood what I was feeling streaming down my face.
I am approaching this session differently than I have in the past. In past sessions I have pumped every drug I could get into my body to stop the pain. Like so, so many stories that I read in here, they just don't work. By the time the drug started to take effect, the headache was gone. Besides, I am an accountant and I can't use my brain if it is drugged up. Now, when my headaches start I just go with it, armed with the knowledge that it will be over in an hour or two. Instead of screaming and beating my head I have begun to analyze the pain, study it. No, it doesn't lessen the severity of the pain but it helps me deal with it a whole lot better than I used to and so far I am not on any prescribed drugs. I realize that this is not an option for everyone but if you are sick of stuffing yourself with ineffective drugs with who knows what side effects you may wish to give it a try. I am stuck with the Beast but I am not his prisoner.
Thanks for the great site and my prayers are with each sufferer.
I have had three periods of time in my life when I have gotten cluster headaches. The first was during my first year at college (in January of that year), the second was during my third year of college (in December), and the third started last night (January 23). Before last night, it had been 6 years since my last cluster headache.
I have seen neurologists in the past, but have not tried any drugs because they usually went away by the time I could get an appointment with the doctor (a 2-3 month wait).
After onset, the only thing I do is try to stay as still as possible. Moving seems to prolong the episode and made the pain worse (although that seems a bit atypical from what I have read). My first one lasted 10 minutes last night. The second lasted 20.
I guess I will start the drill tomorrow night. Set the alarm clock for every hour to make sure I am not asleep long enough to get one. It has worked in the past.
Does anyone here know if acupuncture has been known to help cluster headaches?
i need to find help closer to home can someone help me these headaches are taking over my life. larry bowman
Cluster headaches ... well, they first began at 22. Now 48, they continue, though even more relentless and more frequently and am now a point of literally fearing sleep since this is when they are most likely occur.
It's not uncommon [as many know] they will wake one from a sound sleep and by that time, buy that time as may also are aware it's too late to a thing! Still, for as mentioned me they occur so often I fear sleeping.
Instead walk the floor to avoid sleeping until I simply collapse from tiredness! I know all too well the indescribable pain! Worse still, is that the "beast" as it so commonly referred has taken a very costly
toll. That toll is of every facet of daily life!
The frequency at which they occur has increased so, it is now a daily basis. During the onslaught however, they maybe occurred every 2 to 3 months! They've cost me not just a job but so much more! Including that
of 20 plus year friendships! They were thought to used as an excuse of a "way out." Like that of either a drug addict or an alcoholic, the effect are high!
Most importantly, I'm sorry not for myself but for those who suffer with this illness and whose family and/or friends simply do not comprehend the severity of the pain of such a DEMON!
Those who don't understand show their ignorance! They need to be better educate themselves regarding cluster headaches! Then and only then can they gain the knowledge to better realize this is not an excuse
but a true and most painful, debilitating problem! Let it be know to "never cast a stone at someone suffering from such an unforgiving yet so misunderstood beast as these!" It's been said; " never judge anyone until you've walked in their shoes." Well, I am one who firmly believes this! Furthermore, as a sufferer of Cluster Headaches, I would not wish such pain even on my worst enemy!
In closing, I'd like to see the medical profession more aggressively investigate not just the cause(s) but hopefully a cure! That way so that so many can again look forward to a more productive life and yes,
relationships if applicable -- which as humans, we must remember we all need! To all those let me say
simply say this; don't give up! There is and will be even more hope than now! So to you all, hang in there!
We will make it through this!
I don't usually post to message boards, but after following this one since last summer, I've decided this is a good place to be. My son found this site about a year ago while researching CH and referred me here.
I'm 49 now, and don't know how long I've had this thing. I can remember waking up in the middle of the night with a headache more than 20 years, but attributed it to allergy problems, which I've had since age 9. The episodes didn't last long and I didn't give it much thought. Then 11 years ago they got much worse. I mentioned the headaches to my wife (who is a nurse), but she never thought about it much until she came home late one night after working a night shift and found me in the middle of a bout with the beast. She was horrified at first, then scared, imagining all sorts of problems. She got me an appointment with a headache specialist (Air Force clinic, Air Force doc, wish I could remember his name!) who recognized the symptoms. He didn't have much to offer to ease the pain, but at least he was knowledgable, which is more than I can say about the rest of the medical community around here. My regular doc listens when my wife tells him to prescribe a painkiller, and she has experience with managing pain for her patients on a neuro floor at a hospital. My episodes last about six weeks each and a year apart. Last year if I stayed on heavy doses of hydrocodone I could handle the pain.
I can tell it's been almost a year since the last episode. The beast is rattling the cage again. At least I won't be surprised when he gets out this time!
Thanks for the info on the site, and thanks for listening.
Cluster headaches first began for me at 22. They continue even now, at 48! Like many, they wake me from a sound sleep and occur so often I now fear sleeping and walk the floor to avoid sleep at all cost. I know all too well the indescribable pain.
Worse yet is they've taken a very costly toll on every aspect of life! The frequency at which they occur is now a daily basis. Early on however they would maybe every 2
to 3 months. They've cost me my not just a job but much more, including that of 20 year friendships since it was not understood. The were rather thought as a "way out!"
Like that of either a drug addict or alcoholic, the cost comes at a very high fee! I'm sorry not for me but for those who deal with the same illness and who also have family and or friends who simply do not comprehend not the severity or pain! It is those who are the ignorant ones and they who need educating with regard to cluster headaches! Then and only then can they hopefully gain knowledge to better realize this is not an escape but a true and most painful, debilitating illness!
I write this even as I am suffering on now. So please if any, excuse the errors I only felt that this need be said to those who not suffer such a demon!
My name is Angie & I am blessed with cluster headaches! I was diagnosed about 3 years ago & what started as just a nuisance, now feels like somebody is taking an icepick & stabbing me in the temple. I didn't know what was going on, all I knew was that it was happening several times a day. I thought maybe I had a tumor or something. I was scared to death!! I was treated by different Doctors & nothing seemed to help. If anything the meds. made me feel worse. I nearly lost my job because I literally couldn't function for up to 6 wks. My husband begged me to go to a Neurologist, the Dr. wanted to do a biopsy. He diagnosed me with Temporal Arhtritis, but there was one big problem--I was only 30 and this disease affects the elderly. So, I got another opinion! This time the Neur. said it was Cluster headaches & that I would just have to learn to deal with them. After taking so many different meds. & nearly losing all of my hair, I decided to quit taking them! I was going to DEAL with the headaches!! Wrong!! They won again & I am currently seeing another Neur. I'm taking the Imitrex injections & sometimes there is no relief even with that. Not to mention that my Insurance co. won't pay for them & they cost over $200. for 2 injections. Anyways, I don't mean to ramble, I just feels good to talk about this to other people that are as blessed as I am! Ha!
Hello Fellow suffers. I am a 32 year old ( feeling 62)mother of two. I have suffered with cluster headaches all of my life. The Dr.s say they were passed down from my father how also suffered terribly. Several years ago I was put on Prozac ( for headaches) I thought my Dr. was trying to say I was crazy. He said the Prozac has been used more and more for migrains, and so I GAVE IT A SHOT. I could not believe it, they almost left me completely. I was thrilled to death. Then, a 17 Yr, old Kid ran a stop sign, and totalled me from behind . Here we go again. Now I have been diagonosed with Fibromialga, along with $40k in medical bills. Needless to say, I hurt all of the time. I am currently going to a Chronic Pain Clinic in town. I took a lot of shots at first ( BAD IDEA) they always mad me hurt worse afterward that I did to begin with. Now, I am taking Norco- Hydocodon for Pain, and Soma for Muscle Relaxation. Neither work as I would like, If anyone out there has any ideas for me, I am very open to any sugestions. Thanks all, and I hope we all feel better soon.
Why me? Now that i've came to this great site for Cluster sufferers, I dont feel alone. Im 26 yrs old now, and I have been suffering with these excrutiating headaches since the 5th grade. I dont know what to do anymore. Hearing the words "There is no cure." Makes me wanna just end my life right there. I have to much to be thankful for in life, so I just try to pray to GOD. When I try to explain these headaches to others, I think they think im some kind of looney, or nut case, and others sympathize with me. I wish I could take my head and put it on a doctors head, or neuorologist, so they can feel what we are feeling. Cluster sufferers...Just pray. I will pray for you to. We are going to make it. If you have any ideas, or medicines that would help relieve this pain, dont hesitate to email me. Be Strong.
I had my first bout during the school summer holidays when i was 15. I didn't know what they were, just that at 3ish every afternoon i would be rolling around in agony. This lasted for the full 6 week vacation. My second bout was 5 years ago when i was 23. These again came about 3 o'clock in the afternoon and each killer headache would last between 30 mins for the shortest and 24 hours for the longest. I would regularly vomit with each attack, normally after i had been in total agony for about half an hour. My nose would run continuously, and i would have cold sweats that would drench my whole body. The only thing that seemed to help was what i was prescribed - Sumatriptan (IMIGRAN)tablets. My most recent bout is ongoing and started 4 days ago, although i knew they were coming about 2weeks ago. Again i am vomitting during each attack. The attacks are always right sided - behind my eye, and seem to be coming about 7 o'clock pm, so i am able to work, but not able to enjoy my young family as i am locking myself in my bedroom for the whole evening. Each headache is lasting for about 45 mins, and i am having several each night. I have visited my GP today and have been prescribed IMIGRAN Spray, PREDNISOLONE (Steroids) and to use normal painkillers. I am not too hopeful that they will work but i will let you know. My wife trys her hardest to understand what i am going through, and reading all your comments is helping her, thankyou.
Hello, I have just come across you website and I am totally interested in looking over it more. I am 32 I have had cluster headaches for about 10 years now I was an early starter. I have been patiently fighting them day by day, month by month year by year. My best wishes to all of you.
I am so glad to find a site that could help my husband. He (John) has suffered from migraines since he was 8 yrs old, he is now 28 Until recently they were episodal,This is when they diagnosed him with both migraines and cluster headaches, he also has a lot of neck pain with swollen muscles. Starting at his forhead down to his sholder on the right side. For the last 6 months he has gotten 4-5 CHs per day lasting for hours at a time. He has tried just about every drug out there,along with accupuncture, chiropractic care, neurologists, headache specialists, physical therapists, and a lot of prayers from our families. I hate to see him in so much pain. If any one knows of another good nuerologist/doctor/head and neck specialist in the Chicago land area please let us know. God bless you all. My prayers are also with you all Thank you in advance.
Hello all. I'm new to the site and to my diagnosis of CH. I have suffered from CH (without a proper diagnosis) since my early teens. My pediatrician blamed it on being "part of growing up" (hormonal & bone structure changes) and later, my military physicians blamed it on allergies (which I thought was completely rational, except for one very peculiar symptom; regular as clockwork. Finally, on New Year's Eve, 2001, I was diagnosed with CH. Unbelievably, I had never before heard of the syndrome. My doctor immediately placed me on Prednisone and Flonase, along with Tylenol 3. I was on 40mgs of Prednisone (20mgs 2x/day) for 1 week and the highest dose of Flonase(2sprays/nostril/day) and still on it. The Prednisone seemed to work almost immediately, with no CH for the first 3 days. On the 4th, I had a faint warning pain (same warning as always), but it disappeared shortly thereafter. The same thing on the 6th day of treatment. Following the end of that treatment (now on Flonase only), I have CH episodes, always around 7-8am, last for approximately 90 minutes and are much less severe (6 or 7s, instead of 10+). My doctor said he would refer me to a neurologist if the CH did not completely disappear (I referred myself). Today was my first neuro consultation and I am now on Inderal for at least 30 days, as well as scheduled for an MRI (fail-safe). The Prednisone did seem to work well (nothing else to date has, including migraine meds), but I don't care for the potential problems from long term use. I'm praying that something less dangerous will help.
Thank you for this site. After living with the devil in my head for some 20 yrs now (I'm 35), it is comforting to know that I am not alone (as bad as that sounds). There were times when I thought I would lose my mind.
Sam
I have lived with Cluster Headaches since I was 19. I am now 35. I have seen 4 neuro doctors and several other doctors. I have tried every medication (30+) that is indicated for CH. I have also tried oxygen, accupuncture and even holy water (probably worked better than most prescriptions).
For the first 10 years or so, I would get 2 bouts a year - about 8 weeks each (2-4 headaches a day lasting 1-3 hours each. For about the last 5 years I have been getting clusters starting in September and ending around Christmas.
Usually 3-7 headaches everyday - always waking up at least twice through the night.
By some blessing I didn't get them this year (it has now been almost 13 months since I last had a headache, my previous record was 9 months).
For the last few years I have taken Imitrex injections usually 3-7 times per day with no problems. The imitrex has always worked to pretty well get rid of my headache within 15 minutes. I also take painkillers and take extremely high doses of Prednisilone for 5 days (1000mg IV) at the start of a cluster period and also verapamil for the last 2 years, during a cluster period.
I have gone to out-patients maybe 5 times in my life (before Imitrex) for help when the pain became unbearable.
I have been hospitalized once last year because I was nervous of the amount of Imitrex I was taking and the headaches were so severe.
I have an excellent family doctor who works with me to deal with this. I have 4 young children and can't miss work too much which is somewhat easier with the Imitrex injections. Before Imitrex I would have to leave work no matter what.
My symptoms are text-book and I was diagnosed fairly quickly.
I quit drinking alcohol during a cluster period but I get so many headaches anyway I don't think it would make much difference. I am now a non-smoker but I have had headaches while smoking and while not smoking.
The only good thing about these headaches that I can see is the sense of relief one gets when the headache leaves - it makes you realize how great it is not to be in excrutiating pain.
I have had headaches so bad that I have written notes while down in the basement with a headache thinking that I would not live through it. Maybe hard for someone to think a headache could be that bad - but probably not so far-fetched for someone who has these headaches.
When my headaches do end - I don't take so much as an aspirin or any other medication.
I am worried about the amount of Imitrex I take (average 30 injections a week) but I have to work and it is really the only thing that works for me.
Good luck to all and hopefully a cure is around the corner.
I have suffered from cluster headaches for the last 10 yrs. Until about a year ago I was episodal, and now just to have 2 or 3 days without them is rare. Luckily I have good Doctor who cares, good family and friends, so I live day to day and thank God for all the good things I do have.
Hi, My husband has been suffering for about 10 years now. Before we got married 2 years ago, and i didnt know about his headaches, he went to the doc who said it was sinuses. The first time I saw him with a headache, I said no way there is something wrong with this. Well, i went on the net and found out what it was. I found a doc who deals with this. The first year was hard, we really didnt know what we were doing and I thought he was gonna die from a drug overdose. Kept shooting imitrex, way more that he was supposed to. Anyway, went back on the net and found out about oxyigen. That works but this is his natural season for headaches and last night it didnt work as well. so today I found you guys. I am asking his doc about anti depressants. I read it somewhere that it may help. has anyone else out there tried this method? I would love any info and emails from wifes or even sufferers. Thanks for listening
Gina
I am glad to hear that someone found relief from their headaches. I have had migraines for more than 20 years, have been to numerous specialists, and been put on about every medication on the market. I had one year that was pain free and wasn't even on medication at the time. They now average about every six weeks for several days. My question is this: My neurologist has prescribed Sinequan 50mg and gradually increased it to 150. He also prescribed Zanaflex 4 mg (don't know if you're familiar with this, but it's a relatively new muscle relaxant). The headaches are better, but I have begun to have what I can only describe as major anxiety attacks not long after I take the medicine at night and I have even experienced mild hallucinations. Did you ever have anything like this with the Sinequan? I don't know if it's the combination of the two or what. But as many meds as I have tried over the years, I have never had symptoms like these. Thanks for your help.
is there any new drugs that help the pain
Hi. My name is Jen. I am 24 yrs and have had cluster headaches since I was 16. I didn't get diagnosed until last year and was quite surprised to find out there was a name for my problem. Closure, yet no relief. They come every year in late Jan. and last until late March or early April. I am getting my first one of the year right now. It is mild, thank God, but I know what's coming and it's gonna take my face off. My neurologist has prescribed a few preventative meds (Verapamil, Indomethacin, Depakote) but I haven't been able to bring myself to start taking them. I hate side effects. It's been a battle with myself to decide between guaranteed pain or the big unknown with drugs. As far as I have been able to find out, it is not even known for certain why these particular drugs may work. Why are cluster headaches? I am usually pretty tough, but these headaches kick my ass. I have a 4 yr. old son whom I am solely responsible for and I am taking the open approach with him. He knows I have these headaches, and I describe my pain to him. Heisasweetboy. I also graduated college for aircraft mechanics in Oct. 2001. I am approaching this bout of headaches with serious anxiety. I can't take the Fioricet w/codeine at work but I can't exactly work thru a headache.....though I'll try. I don't want to take the meds prescribed because I don't know how they will affect me or if they will even work. I don't know what to do. My son knows that I will not die but that he needs to be calm and play by himself for awhile. I get mine mostly during the day (2-3 times during the worst of the cycle) and I've had a few wake-ups (those are the worst). If anyone has had experience with Verapamil, Depakote, or Indomethacin I would greatly appreciate a message. I can't take Imitrex cause I get the stiff neck and irregular heartbeat. Fioricet works if I catch it early. Thanks for listening and being there.....Jen
Just a note to add to the last entry. I have been keeping a log for the last 30 years on what may trigger these stupid headaches. This year seems to be out of the norm. Why Jan.and why only every several years? My treatment is
I can normally feel them coming on.If I am quick to react(within 5 min.) then I can stop an attack with Cafergot. If I am later than that I suffer for a long time and even a shot of demeral wont stop it. I usually take a cafergot before going to bed at night and have a trouble free night.
Hello I'm back It has been 3 years since my last bouts but I'm back with a vengence. When you finished your last one you hope that they will never come back but drat the stupid things have come back after three years of pain free living. I truly sympathize with those that get them frequently. I had some cafergot in the fridge from the last time and it still works. I haven't tried anything else. Is there anything that works better that is any safer. I was hoping that I would never have to experience these things again, but I'm back
I'm very glad that I have found this site and would like to personally thank Nancy whom I added to my AOL instant messenger. She's been a great help.
iwas a chronic cluster sufferer for 7yrs until i was offered trigeminal nerve removal (not for everyone though) i am now 47yrs old and although i cant feel the pain now i still get the headaches trigeminal nerve removal means they operate to remove the nerve form the brain that causes the pain i cant give advice on this op but i feel i can help with this terrible pain please feel free to email me and i will try to answer any questions andy
I have been experiencing severe cluster headaches since 1982. Interestingly enough, they began right after a very severe case of conjunctivitis (pink eye) which was the worst in my right eye. So for the last 20 years, for two to four weeks at a time, about 2 to 3 times a year, I have suffered from severe pain on the right side of my face behind my right eye, which looks and feels as if it will pop right out of the socket. These attacks never happen to me during the day. Only at night after work, after dinner when I begin to relax, and then into the night when I have been awakened to this horror. I do know that many sufferers are moderate to heavy smokers and also enjoy alcohol. All it takes is one beer and an hour or two later I just want to be renderred unconcious! Many doctors have prescribed various forms of treatment, however absolutely none of them were at all effective. Everything from tranqualizers to blood thinners and from nazal sprays to heavy narcotics (which by the way I refused to take). Those of you who have experienced these headaches can be the only ones to relate. Unless a doctor can hold or see a condition in front of their faces, they basicly treat the victim with a prescription pad and an condescending smile. My own remedies have included hot packs held over my right eye and forehead, tylenol extra strength (which is pretty much just candy in dealing with this), long walks in the middle of the night and dark rooms. It is impossible to lie down when they come on as the pain intensifies. I am not quite sure why, but in the last couple of years, the frequency of my condition has not diminished, but the severity of the pain definately has. I know exactly when they are about to come on and this is what I have trained myself to do most recently. I take 2 extra strength excedrin the instant I feel the first twinge of pain. I then find a very dark, very quiet place to sit. I concentrate on relaxing all of my facial muscles and I mean completely relaxing to the point of allowing my jaw to go slack. I breathe slowly through my nose both in and out. Within a very few minutes, the pain has already diminished and completely gone within 20-30 minutes. I am sure that stress and lifestyle are mostly responsible for what we suffer from, and perhaps we should all think about that as we seek relief. Good luck and best wishes to all!!!
My husband suffers from cluster headaches. We have been dealing with this horrible problem for about five years. It took us three years to get a doctor to help us even to address the problem. He had headaches everyday for at least a year and a half. We tried Immitrex which did nothing. Then came a real disaster with Topomax. He is now taking Depacote, Neurontin, and the newest drug the doctor has added is Lamictal. I would be interested in any reactions anyone has had to these drugs. Oxygen seems to knock them out but we are still taking these meds daily. I am very concerned about the effect these medications are having on him. He seems to be unable to respond to certain situations and questions at certain times. This doesn't happen all the time but sometimes I don't feel like he is not 'with' me. His personality has changed and I feel he is a stranger sometimes. He acts like he is a walking zombie sometimes. If anyone could give me some feed back on the meds or the symptoms I have described I would really appreciate the help. This web site is wonderful and I thank you very much.
I have suffered from headaches since second grade. Today was bad I had to leave the grocery store to come home. I feel better knowing that there are other people out there that understand. My boyfriend tries but I can;t put it in words that justify the pain.
Hello everyone,
I am 37 yrs old female, that suffers from cluster migrains.
I have one now as I write this letter.
I have been to many doctors and so many hosiptal visits. all I hear is this,I am to young, and they can't find the problem.
I had to go for test MRI, I was told I have a brain tumor.
I had the Chemo- Theraphy and survived it, and now the headaches still are here. I have went as far as cry like a baby, from the intensed pain, I had wanted to committ suicide over this pain, that I couldn't explain to doctors, and they would make me so mad that I walked out of the hosiptal after waiting 5hrs to see them!
I have to say, that I tried verampmil, and tried Imtrex and tried Depakote and even Oxygen.
I found no relief, and the c.h. last for weeks at a time that I couldn't keep my job, and had to be put on disabilty for the job was even to much for the pain.
Now I am doing medical transcription to better myself, while at home. I am in to much pain now to even study!
what am I to do, I went for the shots, and I still am in pain.
If you have any suggestions, I would appreaciate the help and would like to hear from others, who have been this way for yrs, as I have for past 10yrs.
I am glad that I am not alone yet I dont wish this on my worst enemy.
that bad huh? well I would like to say thank you for this site, and for all of you who suffer the c.h. I know your pain.
may God find the cure to heal our pain and give the doctors the knowledge to heal the people.
God Bless
sylvia yunus
I have suffered from cluster headaches for 32 years and only discovered five years ago what they were called. My wife, Diane, read the symptoms to me from a ladies magazine. It was only from that time that I have had treatment for them. Sometimes, when I have them, I want to pull my left eye or nose out of my head. The pain in doing so would not overcome the agony that I feel and in fact, I'm sure, would relieve it. When they go I feel so good.
i'm rivka from israel, will be 62 next month (feb) and i got ch first time in 1994. i understand that i'm cronic because i dont have cycles. it wake me evry night and some times when i take a nap during the afternoon so i try not to sleep during the day and go to bed evry night with one wish that it will leave me alone so i'll have one free pain night. no medication help me but i take cafergot when i jump from bed the minut it attac me (not that it helps...) but i keep take it hoping for some mirical. it lass between 10 min (wich seems to be hours) up to almost 2 hours non stop. cant stay in bed. just walk around like hurt lion in a cage, holding my head, cant bare any noice or lights. cold air do some good but dont take the pain. well you all know what it's like so why to repit how much i suffer?
well, this is simply to let others know that i'm glad i found this site, and i'm even more glad that finely i got elains permision to joyn her chat room. thanks elain!
although there are time differnces between israel and the states, i'll try to joyn the room when it's open early (for me) or, may be when the beast will go away...
well, that's it i guess. see you guys or on m.b. or in the chat room.
Bless you bless you bless you!!!!! I have suffered from migraines for most of my life but specifically was diagnosed with Cluster Headaches 11 years ago. My bouts seem to come every 10 months and the episodes last from 2 to 3 months long...They begin with only one a night around 3am ( lasting 2 to 3 hours if not caught in time with Imitrex...45 min to an hour if caught )...the CHs increase to several times a day with greater intensity and the drugs have less and less effect as the cycle gets longer. I have been on Midren..Imitrex...Amerge...and Excedrine Migrain works sometimes and sure beats the cost of the other meds.
I have not only experienced the horrible headbeating nights but also the awareness of the effect it has on my only daughter...It has freightened her to no end seeing me this way...and it doesn't help knowing my mother died young (53) of a cerebral hemorage I believe brought on by continual migrain or cluster headaches...I recently had an MRI which showed no aneurism and does give us a little releif knowing that I don't have a balloon waiting to burst in my head...though I know what it's like to wish for an early death if these continue...I've been prayed for...repented for everything under the SON....and undergo many preasant friends that think I place too much emphasis on the headaches....I had to drop out of all my "church" obligations 3 years ago after a particularly horrible cycle of headaches...I just hit the wall so to speak...and just dropped out...I constantly fight depression and anxiety....though I have recently been given a prescription for Verapamil...a Cal channel blocker...I had my first dose last night...just in anticipation of the cycle that is due to start in a couple of months...My Neurologist thought I should take it before they start to see if it might prevent them altogether....I WAS hopeful...but we shall see...The dose last night was a bit much I think since i had a very hard time getting out of bed this am....I think it was 240mg...Maybe I'll try a half dose first for a couple of months...Well...I do thank God I found this site and I will pray for all of us CH sufferers....Thanks again for having this site
I Thank God I found this site. I thought I was the only one who knew this kind of unbearable pain. I am 33 yrs old and have been experiencing chronic clusters since the age of 27. (I've had migraines since age 6, and there is a difference.) My clusters last for 6-8 months at a time, headaches occur once a night at around 2:00 A.M. and last anywhere from 2 hours to 4 1/2 hours, with about a one year break in between cycles. I'm glad that there are people who understand "the real Life" that goes on with these headaches. I feel like No one Understands, especially family. They all think its a joke or hypochondria. I am the mother of two small children and these headaches are depilatating and exhaustive, and affect every aspect of my life. I honestly thought I was the only person out there who banged there head against something or beat themselves in the head with a dull object (No Kidding), to try to relieve the pain. I have even thought about suicide (Not to worry, my life and my childrens lives are more important than that) or how nice it would be to cut a chunk out of my head. I have almost lost my job, my husband thinks that I'm full of excuses, and my mother just plain out thinks I'm making more out of it than what it is. I even took her to the doctor with me, so that he could try to make her understand that this is real. I have had oxygen treatments, lithium, indomethacin, prednisone, imitrex, and maxalt, (with alot of trips to the emergency room). We are still trying to find something that will break the cycle. The best thing that helps me deal with the pain are 2 excedrin migraine tablets, a nasel dose of imitrex (20mgs), with an ice pack and a tight band tied around my head (don't laugh, it helps). But this only helps 70% of the time. Of course the normal head banging, crying and begging God to bring death is still going on. My heart goes out to all of you that suffer this.
Hello. I am 36 years old and have suffered from cluster headaches for 20 years. I am the mother of 3 beautiful girls and I work full-time. My husband is very supportive, but he does get overwhelmed when the pain returns. At first I suffered with 2 or 3 episodes a year, each lasting about 3 weeks. Thankfully, I did not have any while I was pregnant. My youngest is almost 2 and I had been cluster free for 18 months, but they have returned. For years I tried many different medications and then I tried to go without any, but it was too much trying to deal with my children and the headaches. I tried Sansert and then Immitrex and then Immitrex injections. They worked well until last time. Now I am using the Maxalt wafers, which work okay if I catch the pain early. My pain usually starts between my shoulders and moves up the back of my head to my right eye. I have been pain-free for 15 hours, and I started to hope that maybe this was it, but no...It's starting again. I would like to hear from others with families. How do you cope?
i have found this site so interesting, and have only just began. my cluster headaches i think are getting worse each time i get one, ihave not yet found a medication that works, it is just like playing a waiting game.
I've been suffering for two years and I still don't understand what ch are all about other than the worse pain I know that won't go away. They lasted for 6 mts and vanished now they're back, I forgot I have migraines as well. I have maxalt, fiornal w/codeine and zanaflex yet I still feel like I'm hungover all day. This type of pain has not been completely suppressed. I would like to know what drug(s) will take this pain away completely
Hello All,
Great to see that there's actually a community devoted to this, it sure helps to know there's "others" out there, and it also helps my family better understand what I'm going through.
Hello to all! I want you to know that it has been awesome to be able to read your stories. I am totally amazed to read how many people really are suffering with cluster headaches. I posted a note a couple of weeks ago when I found this site. My husband is the CH sufferer and he is battling multiple series of headaches throughout the day and night. They are worse at night. We went to see the neurologist last Thursday. They are weaning him off of the prednisone because he has been on it for over three months now and he is experiencing some of the side effects, such as swelling of the face and stomach and a major personality change. The doctor wants to try him on an anti-seizure medicine and nasal drops. He does not have seizures, but the concept is the same. For someone who suffers with partial seizures, the doctor gives them this medicine and it prevents the seizure from coming. So they want to try this to see if the concept will be the same with the cluster headaches. The nasal drops will take the place of the Maxalt and Imitrax. The drops will go directly to the pain and stop it then. The reason he cannot take the Maxalt or Imitrax is because it is too expensive and they will only allow him to have six pills a month. As you all well know, six pills don't even scratch the surface. I have lots of faith the God will prevail. Please know that I will be praying for each of you that have posted a notice on this site. I will pray for your families also. A big thank you to the one or ones who have put this site together. I look forward to posting more as my husband's treatments continue. Joyfully in Christ, Carole
I'm 35 and a 2 time a day chronic CH sufferer. This Hell has brought the real meaning of the word PAIN to a whole new level. I've looked every where for help and have not found the answer to many of my questions yet, and i'm woundering if i ever will? My wife realy tries to be supportive but just like anyone else i think it's hard for her to understand just exactly what i'm going through and i don't just mean the pain but the mental torture thats there 24 hrs a day and the vioces that say look for the DEVIL hes coming tonight!
But my hats off to my wife she has hung in there with as much support and love as possible if it weren't for her and my loving chidren[1-11&-15] I know i could not take a another day of this HELL! I don't have to discribe my battle with the devil when he shows up in person because i belive that all of the sufferes that are reading this already know, but if you would like to read some of my headbanging adventures just email me. Just remember doctors dont know every thing, try things that are safe for yourself
i experiment with some things just trying to find the magic potion. Good luck yal, i know i need it.
I am a 53 year old man with a history of migraine since I was 10.
I developed cluster headaches 8 years ago, gradualy increasing from a couple of days the first year to 10 weeks in the 6th year.
This is my second posting since jan 12. I have started another cycle of cluster headaches a week ago. My last cycle was in 1999 and lasted 10 weeks so
I figured i was in for another long painful bout. After reading the postings I decided to try the "water" treatment. I have been drinking an 8 ounce glass
of water every waking hour for 2 days now. I am extremely happy to report as of now I have not had an episode in 2 days. I do not know if this is a temporary
situation or not but I will continue with the water for one more day to see if i broke the cycle.
If this works I have a therory: I take many meds, one is hydroclorithiazide which is a water pill "diaretic". I also have been drinking alot of tea lately. This too
is a diaretic. another med is verapamil which the doctor recently cut me back to 80 mg every other day (this is a benaficial drug for blood pressure and
headaches). my blood pressure was going too low. Plus it is winter, a dryer time of the year. I think I was dehydrated which is known to produce
headaches. Maybe I found another trigger. I can only hope.
I have been free from these headaches for about 7 years now - minus the occational flare that reminds me and horrifies me that they are starting up. I think the never knowing if it is going to be the start-up of a series can make you nuts, it has haunted me. Over the past two weeks I have had them starting up again and a friend found this website for me and its a relief - I havent had anywhere to turn to for anyone who understood what these are and just how bad they are. I dont know what I am in for in the coming months now with it starting back up, the last time was so much of a hell and worse that the series before that it scares me. I am almost 29 and had to deal with these since I was 13 years old and I have nothing to fight the battle with other than knowing I am not alone now. They are starting out light but getting worse each day and I am dreading each coming day - hour - moment, hoping I get some break from it - no matter how small it is, and fearing the next. I dont dare tell my family its back - not like they dont have enough going on, but its getting more noticable each day that something is going on. I guess only time will tell.
have suffered with clusters for 25 years+. approximately 15 years ago i began taking sinequan(generic is Doxepin). it is an anti depressant with minor side affects if taken at night. the high theraputic dose for depression is not necessary. my headaches used to start in fall and last 6 to 8 months with several attacks per day. upon starting sinequan my headaches were limited to 4-6 weeks per year. for the last 6 years, when i feel symptoms coming on, i kick the dosage. i have had three FREE years in the last six years and the headache periods are shorter. Dont give up! i tried everything in the book before sinequan. if you want more details, please email me Jeff
I am a sufferer of CH since I was 21 years old I am now 39
I recently started back with the headaches after being free for almost 7 years. they are worse than ever I am glad to see an increase in information and support because as I write this I'm having my third bout of the day and I had to miss work yet again(my boss is thankfully understanding)
I hope to utilize the contacts and info found on this wonderful sight thank you. dirk
Hi - I'm 40, Episodic CH sufferer for 21 years (twice a year - 8 weeks each time). I take sansert, steroid shots, every time, and when that doesn't work, every other prescribed drug I've seen mention of on this page. Last time it was so horrible, the worst of 21 years, and I was on all sorts of new things....but I turned to accupuncture and traditional chinese herbal meds in the end to help bring me back to normal. I don't expect they can stop the cycles or prevent the pain, and I'll still take the nasty drugs once the headache cycle starts, but it did help me feel better & I believe it did help counteract some of the bad side-effects of the drugs. I could see evidence of this in my complexion, appetite, sleep patterns, etc...
I'm a 52 yr old male who has been suffering from CH for about 25 years. I haven't had an attack since 1997, but they started againg last November.
I just found this site and almost cried when I read the stories of other victims of this god forsaken curse. I'm not alone, I'm not insane this is really happening to me.
Oxygen therapy worked the last time I, but have had mixed results this time. The pain this time is worse than I can ever remember. I've been given more drugs for this condition than I can remember.
If they worked one time they don't work the next. I have an appt. with a neuroligist tomorrow AM and pray that they can do something for me. I can't tolerate the pain that wakes me up in the middle of the night.
I've often thought about suicide, but the thought of never seeing my daughter again somehow has kept me from going through with it. You don't kknow how much it means to me to know that there are many
others out there that understand what I'm going through. Medical science does't understand what we go through or they would work a lot harder to discover a cure. God bless you all!
I have had clusters since age 18. I am now 49. I pray for all CH sufferers for an end to this exhausting pain.
I'm 40 and have suffered for 15 yrs. It's nice to be here with all of you and my story is not so much different from most of yours'. I would like for someone to help me address the fact that I am forced to take a vacation day or not get paid for the time that I experience these headaces. Firstly, I think that they should be treated as a temporary handicap or something along those lines. Secondly, I'm not sure that the "Ache" in "Headache" accurately describes the pain. I think it is more of a temporary "Trauma" and we all should work to be recognized as occasionally handicapped people. (With apologies to the permanently handicapped.) Please, someone write to me and offer advise. I would like to be more involved in "Our" cause and I'm ready to start today!
Your Brother,
Tom
Male, 37, sufferer since I was 25.
I am a 55 yr old male who was diagnosed with CH 4 years ago by a neurologists. I had never hear of them until then. I was immediately put on Verapamil and Nortriptalyn. Two years ago I mymedicalcare was taken over by the Durham VA Medical Center. My new primary care physician has just now started to suggest I try Oxygen. As yet no one has mentioned Imitrex. Reading in this site was the first time I have ever heard of it.
My headaches last 20 to 45 minutes each. I've tried Indocin at the onset but I Can't tell if it works since it takes that long for the pill to work.
It seems that stress can bring on a Sesion of headaches and also quicken the intensity build-up of the pain.
The worst thing that has happened is the loss of my VA Vocational Rehabilitation due to the CH and their causing me to be declared "unemployable". And then have the Docs just say there is nothing that can be done because "noone knows what causes the headaches."
My Doc is trying to get me into the Duke Neurology Research Unit. At least being a gunea pig I will feel like I'm doing something instead.
It's now 1:30 am and this headache is over so maybe I can get some sleep now. I almost look forward to the midnight headach because I know that in 30 minutes I'll be able to get some rest. Reminds me of VietNam when we were being rockted every night during Tet of '68! No one could sleep until the first attack of the evening and we know that all the sirens would go off and we could dive for the bunkers.
Oh well! Thanks for the forum. It helps to know one isn't alone. Also the web site has good information. Good night!!
I am 53 years old and have had CH for 32 years. I think I've tried every drug known to man, had 4 teeth removed, tried bio-feedback, holistic treatments, oxygen, and prayer.
I've been admitted to the hospital twice for 10 days each time while under the care of the Faulkner Headache Clinic in Boston. I was treated with steroids to stop the cluster and a morphine derivative to address the pain. Nothing the doctors did had any impact until I tried Imitrex which worked immediately. My last attack lasted 6 months and was
the most frustrating. I carried the cure for my headache around with me but could only use 8 times in 7 days. So which headache do you use it on?
Until recently I had gone 3 years without an attack. I had heard that there was a good chance the attacks would actually stop as you got older. The attacks have just started again but appear to be somewhat different. They currently last 5 or 10 minutes once a day and that's it. Has anyone else experienced this?
I'm also interested in peoples experiences with lidocaine. Does it work?
As a child we all got used to watching the anguish of my father as he paced the hall and landing with a wet cloth pushed hard against the side of his head. Now thankfully it has been more than 25 years since his last CH. I myself am now 52 and have been suffering the same CH as my Father for the last 24 years. Along with many others the feeling of isolation, and the frustration of trying to explain the extent of the pain when most have no bench mark is now over… Many thanks.
I have recently been diagnosed w/ch. I have had them for 3 weeks now. Onset around xmas time. It is without a doubt the most painful experience I have ever had. Root canals are nothing. In fact I cant even find another type of pain to compare it to. Is there an end to the suffering. I have just been put on prednazone and O2 and immitrex injections. The shot does take the pain away in 10 minutes or so. I have had to use them 5 times in the first 5 days of the prescript. I am trying the water treatment after studying the websites input. The depression from the disorder is another factor I will have to learn to deal with. Any suggestions would be appreciated, Thanx P Royal CH sufferer
SUFFERING for 14 years i get attack every day i take imigran tablets 100 mg which do work but make me feel really shitty
and then i have to sleep are the tabs harming me?
but who cares if they work
i can have no choclate/chesse/banana/beer/wine/and only sex gritting my teeth awaiting for the attack
has anyone got any magic cures
Hi, my name is Bernice and I started having cluster headaches when I was 19. I am now 59. I gave up years ago trying to tell doctors about my head. The last twenty years I have just gone it alone. I find the most relief with ice and the experience that they dont last forever. I manage much better now to stay calm than when I was younger. I do use the tips of my fingers to soundly tap my head and find that that helps. I just was introduced to this site yesterday. I am in mid cycly right now. I have cried ever since I read all the information. There really are other people out there who understand. I am so relieved that I am not crazy and dont somehow wish to suffer. It really is like fighting the devil. I immediately contacted the doctor and he agreed to the prednisone treatment. I took my first 80ml last night and SLEPT ALL NIGHT. I kept waking at the appointed hours when I would be having a headache, checked me out, no pain, rolled over and went back to sleep. Only you all could understand what that means. I now see hope, a light at the end of a very dark tunnel. I can not thank you enough for what you have done. I know of a man in our community who needs this site. I will see that he gets it. Keep up the good work. I have just thanked God all morning for what He has done.
i know i`m not alone,and GOD is a cruel dude!
I`m a CHRONIC CASE,diagnosed,if you knew me,you`d understand,IT FIGURES!
5+ yrs of this living hell has mentally and physcialy taken it`s toll on myself,but worse has affected my FAMILY and Marriage.thankfully both are in for the long haul. i have just finished a IMI injection,which does work,BUT,need i say more!my routine is O2 in copiouse amounts,300mg of the LITH 3 times dly,recently have gone to NORVASC 2.5mg am and 5mg pm from VERAP 180SR 1 am 1 pm and as the above states IMITREX 6mg injectable as needed,BUT,no more than 2 in 24hrs though there`s days i would like,4 to 5 pops, i dont exceed the dosage from fear of some other nightmarish side effect.
i`m being treated at Dartmouth in the nuero department and they have done a good job,thats to say,keep me from ventilating my head with high speed lead.the one area they have neglected as i read more of these sites is SLEEP PROB`S,oh yea thats me!they shall be getting a Earfull in that department soon.i recently went thru there HEADACHE clinic shall we say and was treated with DHE thru IV with some anti puke injection first.one could say it worked as i had no headache THERE,but neither did i have one going into there clinic.FIGURES huh.
i guess this is written in total frustration and for those just starting this HELL ON EARTH EXPERIENCE!HANG IN THERE!!,if I can come this far with this 5+yr journey i believe any of YOU can,as i am not the strongest or most disiplined 98% sack of water walking the planet.
i`m a ex-soundman/roadie of 18yrs and had figured that with,shall we say,all the FUN i had,did this to my self,THEY SAY NO,that lifestyle is not condusive though to being a sufferer,glad i`m thru with the bizz and others should heed the WARNING!!!
Thank for listening
wife of sufferer - only hope i can find something to help husband
Hi,
Thank you so much for this amazing site. Having read some the posts, I now feel not so alone in the world. I've had CH's for about 10 years. They've been gone for the past 5 years, but came back a few weeks ago. I've tried just about everything (I'm in the middle of acupuncture treatment right now), but the only thing that helps 100 percent of the time is Imitrex shots. The nasal spray and pills don't really cut it for the severe headaches. I can't afford to take a shot for every headache, though, and have not had one in years as I've lost my doctor connection who use to give me samples. Oxygen seemed to have worked pretty well for immediate relief also. Has anyone heard of or tried a drug called Ultram? I tried one a week ago and seemed to do the job, but this was just given to me by another sufferer. I don't know what these things are, but if they are cheaper than Imitrex, they might be worth checking out.
Man, I can really relate to all the stories of misdiagnosing doctors, excrutiating pain, etc. Although I wouldn't wish these things on my worst enemy, I'm glad all of you are here.
Lets try to fix these things!
Here is to all the sceptics – everyone knows how it feels when your elbow hits the corner of a table etc. 10,000 Volts going trough your arm! Tell the sceptics to find that spot on their elbow with the end of their forefinger and tell them to squeeze it as hard as they can – that’s how I would describe the pain right behind my eye when I’m having a cluster attack. I’m a male of 41 (wife and 2 kids of 5 and 7 – normally the happiest man on earth when not having HA), and I’ve been diagnosed CH 2 months ago. Besides migraine with aura symptoms (haven’t hurt much yet) I apparently had CH for about 20 years, but only 1-2 mild attacks a year until two months ago. At Glostrup Hospital (Copenhagen) I was treated for “abuse” of common painkillers, which I took because of headache caused by muscle tension. But too many painkillers a day might give you a terrible overall headache several times a month! When I stopped taking the painkillers 2 months ago, the overall headache slowly disappeared, but the CH went bananas. My CH is not typical, but the doc’s says it is CH – starts early in the night as a sort of very bad overall headache, and late in the morning the CH slowly picks the left or the right (yes, 2 sided CH damn it!) eye to “squeeze” into tears until late in the afternoon were it suddenly disappears. Then the attack is gone, and without any warning it will strike me another random night. Luckily the pain is “only” about level 8-9 on the Kip-scale, and I have only heard the steps of the Devil - never seen him! If I see him, I’ll kick his ( ..beep ..) and squeeze his elbow! And now for a miracle – if I inject Imigran (narcotics wont help at all) during a CH, the attack is gone in 5 minutes! No more spoiled weekends. No more uncertainty about “where I am tomorrow”. No more endless moaning around with a hand towards the red, dripping eye trying to “put it back into the scull”. In other words – no more real pain! Thanks to clusterheadaches.com for the best site on the web. It is very, very emotional to read about all these tortured people even for a hard-core headache’r!
ive been suffering from clusters for over 20 years.i just finished a 1 week ordeal.i find that when my neck starts feeling funny i go out and run.running for some reason really helps take away the pain.ive taken everthing known to man for these godforsaken headaches but running really helps.you will still feel the preasure a little but the pain will go away.thanks dennis hathaway
CH sufferer for about 9 years
27 years and counting. The last episode lasted 3 1/2 months. That's 3/12 months out of my life for that year. No cure. No relief. Not able to take this much longer but apparently inevitable. Trying to deal with it. I am usually under heavy narcotics for the duration. The only thing almost as bad as the clusters is trying to get off the narcotics until the next time around.
Hello Again, this is my second post (the same day) i just want to add about meds that my neurologists has prescribed. I've been through a lot of painkillers and other paracetamols, i.e. brufen, migrenarton, mortrin, olfen saredon, panadol. They all worked for sometime but not anymore now. I was prescribed Zomig, Inderal, some meds with sedatives like Zanax (others can't remember the names anymore)to say the least, they all worked for sometime. The last one i was using was Olfen injection, for a minor attack it was alright but this time it doesn't seem to work anymore so i decided to stop using them. I got bumps on my buttocks the last time i gave myself a shot and since it doesn't work anymore i stopped using it.
I just spoke to my doc upon finding this site (which is today) and told him about some of the meds that i saw in this site, which surprisingly i haven't got any except Zomig and Inderal among the list of prescribed meds here. Quite a bit annoyed when i mentioned to him about this site and he said he knows about it but to be blunt about it, he got no single clue about this site and the meds. He even requested me to print the whole thing and take it to him on my first available time so he could give me a presciption.
I have a session with him for twice a week (since 1999) but it didn't helped. I spent more than half of my life savings for his consultation fee and meds alone. I reckon my doc doesn't really got the whole idea of how terrible the cluster head ache is. I can't change my doc now since there are only a few in this country where at the moment i am working. My friends from the US and UK said don't ever rely on an Indian doctor. I don't mean to offend anyone (Indians) but they are quite right about it.
My doc told me that i trigger the attack by being stressed out and doing a lot of physical activity like going to the gym. That's pathetic i must say. I just wish i can find a doctor online to help me with my misery. I am not in the US or UK now.
Thanks, once again.
Aries
I am a 53 year old man with a history of migraine since I was 10. I developed cluster headaches 8 years ago, gradualy increasing from a couple of days the first year to 10 weeks in the 6th year. I have been free for a year and a half untill recently .I have started another cycle of hell. I have tried many meds to releive the pain, which takes about 45 minutes to react. My first line of defense is to get on the treadmill within the first few minutes after it wakes me and try to walk off the pain. Usualy takes three miles before it subsides. I beleive it is because i am taking in more oxygen when i walk. I try not to resort to medication if i can help it. pain meds seem to produce rebound headaches of more intensity later. I am a controlled diabetic and i take medication for depression and anxiety which helps alot. I also take verapamil and diovan for blood pressure and headaches. recently started zoloft for depression. It takes as long for pain meds to work as it does to walk it off, so i prefer to walk if i am able. Sometimes it just is not possible to get on the treadmill fast enough so i take meds and try to cope. I hope this helps some.I have been to specialists and I have learned how to meditate whenever possible. this too helps a bit.
Been through this torture for the last six years and don't know what else to do about it. Nobody seemed to understand the pain that i'm going through. People at work thought i was just exaggerating it, others think it's purely psychological, worst my partner thought i'm a hypochondriac.
I'm at it again this very beginning of the year. I rarely have attacks during this month of the year, but i do now.
I want to be able to sleep continuously in the night. I want to wake up in the morning when my alarm clock goes off, not because of the pain.
I dread the pain to come back and God knows what else i can do when it does. I sometimes want to go down the road and be hit by a truck.
I think most of the sufferers would say the same or worst than what i could say. I just wish this pain will leave me alone, us alone.
Aries
Interesting to read other experiences. I assumed an alergy was the trigger, always occur late november, early december (commencement of summer in Australia), However I lived in HongKong & Tokyo and in each place they start at the same time, Tokyo it is northern hemisphere winter and HongKong is close to neutral although it is the colder months.
I am in the middle of an episode now, have used deserill (methysergide) as preventative -for 20+ years- and Imigran (sumatriptan) as quick fix-for 5+ years-. Latter working well, deserill dosage is highest ever (6mg/per day) and still waking in the early morning. Having read this site I will increase to 8mg / day to see if that is a fix, I though 6 was a very high dose.
5 Years since my last attack although I was taking Prednisone for an unrelated condition for a little over 12 months so that may well have disguised any attack during that period. "normal" to go 3 years between attacks. Reading some experiences it makes my episodes seem minor.
What a great site this is - Thanks for thaking the effort to create it.
I have suffered for many years from what they told me is Migraine headaches. I have taken Imitrex but mostly Fioronal w/Codein. This past week I was rushed to the hospital with internal bleeding and diagnosed with Diverticulosis because of the aspirin in the Fioronal. Has anyone else had problems such as this. They told me not to take aspirin in the future but my headaches are still with me and no one really seems to want to find a remedy.
Father of a 38 yr old son with cluster's per Univ of Mi but no light at the end of the tunnel. Is there anyplace out there that we can contact with expertise in dealing with this monster. It is destroying all of our family.
Hi all! It's really great to find this page. I am a cluster sufferer who has not had an event since 1992 until 2 weeks ago. It's begun again and worse than before. I used oxygen therapy when I would go to the E.R. at 3am 9 years ago and then have Imitrex I.M. given. Today I've started with Imitrex tablets and Lidocaine for on-set. Needless to say that I'm pissed that this has begun again after all this time. The frequency has been 5 times a day, 2 during daylight and 3 at night at specific times! I have hardly gotten any sleep in the past two weeks and my attitude has gotten very negative and the pain is excruciating. I walk around every day with the aura that, at any moment, an attack will begin. It's so comforting to read stories that are like my own and it doesn't make me feel so alone in my pain anymore. May the creator bless us all with relief from this debilitating pain. Thanx for being there.
Fantastic site.
I am a 56 yr old male,that has been having these head ackes since I was 24. I am now starting a nother 3mo sesion now. It started two days ago-- with one now in a short time it is up to 3 a day. It will go to every 2hr all day and night soon.Each will last 30 min almost to the min. these headacks come every 2 yrs but I must say that I missed the last one --- I thought that I was getting to old for them. I heard some whers that the older ya get -- there was a chance that you would not get them---oh well so much for that... Note if antone should want to get back to me please put somthing in the comment -- so I know to open. thanks Alan
I have had CHs since puberty and recently they have gotten much worse. I am 53 so I've been suffering for about 40 years. My "home cure" is to take about 2,000 mg's of ibuprofren and 3 Sudafeds. Recently my doctor treated me for chronic Asthma with Prednisone and I thought I died and went to heaven. It actually snuffed out my headache. He does not want to use this for ongoing though treatment due to my age and possible side affects. Over the years I have tried various drugs such as Duradin, Maxalt-MLT, Vicodin, etc. with minimal relief. I also suffer from severe tinnitis maybe due to all the aspirin, tylenol and ibuprofen I have taken over a 40 year period. That started about 15 years ago. I have been taking Ambien for the past 5 years so that I can fall asleep in spite of the 50dbs of screaming in my ears. What other medications might give the same relif as Prednisone?
Just been diagnosed as having clusters. First episode 4 years ago, when I put it down to stress. Second time, just recently and still in middle of current episode. This time, my wife forced me along to the doctors, went through GP and three specialists (all of whom said "hmmm, most unusual" and thought it was glaucoma or sinus problems) before I had the diagnosis. He suggested I look at this site, which I've done, and if confirms to me that it's *exactly* what I have. What a relief (in the funny kind of way....).
Now I've just started taking some prophylactics (Isoptin and Neurontin) and see what will happen.
Cheers
Peter
I have had cluster headaches since i was a child but never new what they were till I hit age 30 at that point headaches had lasted over a month,than I started to think (what have i got a tumor or something else.I than made an appointment with a neourolgist it was than I first heard about cluster headaches.I am in a cycle of headaches now,but the peak is over(at least I hope so)I am takeing prednisone and daokote,plus my blood pressure med.verapamil dr.had me double the verapamil,and now wants me to take 3 times daily.To be honest the meds.help but did not stop headaches.I`m so glad I found ths site.When you try to describe headaches to people and what you do when headache occurs they look at you as if you are crazy.I have gone as far as banging my head over my left eye with a hammer,bang my head on floor,counter etc.My headaches would normaly last a couple of weeks,but this cycle is over a month now,up to this point i hadn`t had a headache for over 2 yrs.I usually get headaches at night time(wake me up from sleep),once in awhile 9:00-10:00 pm and 4:30-6:00 am.I am takeing the imitrex injection when headache occurs that is the only thing that takes headache away,have tried the nasal spray(that works if I caught headache on onset.)I am seeing a new Dr.and am pleased with him( he suffers with migranes)so he at least has some idea what these headaches are like.
I am a 37 year old male who has been suffering from CHA since I was 16. I am justing coming off a 4 month cycle that has put me on disability. The worst feeling is that it feels like everyone thinks I am crazy. The word "headache" comes nowhere near describing what I go through. I came across your website today and it almost brought me to tears to see that there are others going through the same misunderstandings with others that I am going through.
I wish I could download all these message and make people read them so they would understand. But I know they would just toss them. Thanks for your website.
Until four months ago, I thought I had spent the last twenty-five years suffering from a TMJ problem. I have worn out many different types of mouthpieces and spent tons of $'s on dental work and drugs that did not work. I was so relieved when my new doctor, who is a good diagnostician told me I did not have a TMJ problem but a Cluster Headache problem. My euphoria did not last long and my episodes have now gotten more frequent and more intense.
When I found this site today I was again relieved to know that I am not alone and not crazy. As I was going through the site I broke down in tears several times - don't know why, just did. Everything I read today I can relate to - especially the e-mail from the devil.
I hope someday someone finds a cure for this curse so we all can live our lives in peace!
It's reassuring to know I'm not alone. Though sometimes at 3.00 am with a real screamer of a CH, I feel VERY alone! I'm 58, and I've had CH since I was about 40. Roughly once every eighteen months or so for 3 months at a time. Like most of your respondents I'm on Sumatriptan injections (called Imigran in the UK). Only use twice a day -- HA! What am I supposed to do for the other 4 - 5 attacks? I use Indomethacin as a painkiller - effective if a big enough dose is taken. The side effects are another question.......
The doc continually tells me CH is not dangerous or life-threatening. That may be so, but as I pointed out he just wants to keep me healthy so I can have another 20 years of this pain. What a prospect. If anybody comes across a medical miracle, please let me know!
Good luck everyone.
It's comforting to know I am not alone......Wishing for pain free days and nights.......
dear sir,
i am a qualified homoeopathic doctor having a bachelor in homoeopathy,i heared about some jobs awailing homoeopathic doctors in uae,so if possible give me information regarding my request.i will be very thankfull to you.
thanx.
dear sir,
i am a qualified homoeopathic doctor having a bachelor in homoeopathy,i heared about some jobs awailing homoeopathic doctors in uae,so if possible give me information regarding my request.i will be very thankfull to you.
thanx.
dear sir,
i am a qualified homoeopathic doctor having a bachelor in homoeopathy,i heared about some jobs awailing homoeopathic doctors in uae,so if possible give me information regarding my request.i will be very thankfull to you.
thanx.
I'd like to invite any fellow-sufferers to read my essay about my experience with cluster headaches, at www.jscheuer.com/in progress.
I have had migraines since I was young. Since 1999 I have tried to manage them myself, without success ! I have just recently gone onto Propranolol, they seem to be ok, I have not had a migraine as yet, but only time will tell. My migraines are so bad that I just spend 3 days crying and being sick. I so much want these tablets to work...
My H.A comes on after I walk about 5 miles every day. At night I smell an odor that is not there--A phantom odor, driving me more crazy than the cluster H.A. Is this a usual symtom with others? Also have hissing in my ears. Been to many docs-none of them mentioned C.H.
Brody
I ahve been putting up with 5 or more headaches a day now for about a year off and on. My day starts with a headache. It has become my new alarm.
What an AWESOME site! I have had clusters starting when I was ~32 (I'm 44 now). I only figured out they are/were clusters in the last few days! Compared to many on this board I am pretty lucky, I have only had "suicidal" headaches about 2-3 times in that whole time, and when I am in a cluster I get only one a day, in the evening, and have only had one wake me up one time. I did see a doctor once who told me I had "atypical migraine" which meant pretty much nothing. I am going to try the water X3 and maybe see if I can get an oxygen bottle in house to see if that works. I'll use a doctor from the ACHE list!
What an astonishingly high quality, useful, amazing site! I bet this site helps prevent or ameliorate millions of headaches a year! Thanks!
I have had cluster headaches for years some days as many as 8-10 it never seemed to matter when or for any reason. At times they might go into remission for a month or two but in 1998 they were so severe and so many that suaside seemed to be my only option, Ive tried so many things heavy narcotics to ciropractors,anyway make a long story short, I tried the imatrex(shots)after the second one the headachs have been in compleat remission it has been three years.Thank god,and thank Dr. Carmical
This website is fantastic. I was given 100% O at a doctor's office and it worked in about 5 minutes. I was also given amitryptylin but it made it impossible to get up the next morning. I became groggy and moody as well. I hope to suggest a few of the alternatives from the site to my doctor. Thanks a million!
Hello,
My name is James Asherman. I have been diagnosed with Chronic intractable Cluster Headaches for the past 30 years.
In addition to countless neurologists i have attended the Montefiore Hospital
and Mount Sinai Hospital Headache clinics.
Some years ago I found a doctor at Robert Wood Johnson medical Center, who was compassionate enough to prescribe the only drug that seemed to actually provide relief.
Nembutal.
Even though obtaining the prescriptions, transferrring my treatment to different doctors when the old onews moved away, and dealing with pharmacies represented significant hurdles, I was abe to follow a treatment that provided me with a SIGNIFICAnTLy improved quality of life and the time I was on this medicationn ( along with cafergot) WAS the most conventionally productive time of my life. I have not had any addiction problems and afer more than 9 years I was still taking the same dose and getting the same releif that I got the third day I took it.
Now the Abbot labs company is no loonger producing nembutal, and I must go through a new round of examinations and experimentations in oreder to obtain proper treatment.
I feel that I need Barbiturates. Thesed drugs are made legally in factories and te idea that I cannot gain access to them, despite being triple diagnosed with a condidtion described as " the worst pain known to medical science(short of having your eye gouged out) ) is absurd.
That I have to suffer the tortures of the DAMNED almost every night , because licenesed professionals are afraid to write a word on a peice of paper, for fear that they might have to answer a question, offends me.
I am on a drug called Ambien. This is apparently a controlled substance and presents the same problems that Barbiturates do at the pharmacy. It is supposed to be a powerful sleep inducing tranquilizer but I take a dose and a half and wake up in two hours with a blazing suicide headache regardless.(when I informed my neurologist of this and asked for something stronger, she gave me a bottle of valium for the road and advised that i seek other treatment alternatives ( the kiss-off). I need something stronger but the professional healthcare people are so spooked by regs that i will soon be forced to the street to obtain my meds.
thanks
Jim asherman
Hi my husband has been suffering from headaches for the past seven years.He's had every tests done but no diagnosis can be made.This pain is excrutiating I cry for him when it starts. Sometimes it only comes twice a year sometimes once a year during the month of December. What can we do for these headaches to see a man of 42 years cry in pain is very sad especially if you can do nothing to help. His pain is on one side only.
This is my second entry, and we need some advice from anyone who has the time. My husband who is a chronic sufferer, is currently on Imetrix. It works well, however he can't take 4-5 pills a day for obvious reasons. My question is , is there a pill that could be taken once a day to prevent the headaches from coming on at all? The imitrex only stops the headache once it has come, but does nothing to prevent it. We also were shocked to discover that 30 pills of imetrix (a month supply)was over $400.00 Canadian. And although the great Canadian medical coverage pays for them, they will not pay at that price forever. The rate my husband is going through these pills, he will be taking more than 30 a month! However, there is no price to put on a headache free life. Good luck to all of you, we will find a cure.
I have suffered with headaches for so many years that I think there is something wrong when I don't have one. The only thing that I have been able to take is anacin believe it or not,anything else won't even touch them. If I don't take it at the first sign of one I get sick or have to take more than 3 during the day.The thing I worry about is being addicted but my Dr. said not a chance,what do you all think?
I am a 24yo male who has been suffering with CH since I was 17. From the beginning I was told it was tooth problems, from there it has been many other diagnosis'. Rightn now I currently use the Imitrex(sumatripten) pills & injections, the problem is right now the doctors won't give me any more than 2 injections per 20 days, and when I'm having a bad episode I most definatly need more than just 2. Right now I have just gotten over a cold and I'm having a bad bout with them right now about 3-6 a day. I have been reading about the use of oxygen and I think I'm going to ask the doctor about that... hopefully it helps. I think this site is really great for sufferers and their families. My wife has been dealing with this as well, watching me wake up crying like a baby. She's pregnant and has enough on her mind than to watch me suffer. I HATE THIS!! I would do anything than to have to deal with this torture and feel helpless.
-"Tortured Michael"
As with probably most people coming to this site for the first time, I am currently in a cluster headache cycle...the part of the cycle where you start to get desperate. My imitrex is seemingly not working as well and know I am going to have to go back to a doctor and try to explain this malady again. Fortunately, I went to the OUCH website and saw the name of a recommended doctor close to me. Am looking forward to giving this a try. Glad to have found this site!!!
Hello folks. I am 51 yrs old and have suffered with CH for 31 yrs now. My cycles last 2-3 months. My pain is on the right side. Sometimes I skip a year. My triggger is usually a bad head cold. Oxygen works most of the time for me. I am still looking for answers. What works for me in the past may not work for me now. I just tried some Imitrex spray and it is effective. The key to to stop the cycle!!
Hi everyone. Thought I would drop you a note as I have just ended my second bout of cluster headaches. I was very relieved and comforted by this website. My doctor(s) are quite knowledgeable about the demon, but can't empathize, neither can my partner!
Anyhow, thank God for dermerol injections and imitrix pills. At least they have temporarily stopped the torture.
Finally, a question. I noticed that much of the research is linked to seratonin levels in the brain. Do any of you, or anyone you know who suffers, also take SSRI's like Prozac? I'm wondering if there is a link.
Thanks and God Bless, Jeff
To some degree...i am some-what reluctant to feel privelidged to post a message on this board , but this site was introduced to me by a friend , and albeit that I do not suffer from CH personally , having read some of the stories and situations that people have been confronted with , i was reduced to tears of sadness ...and could not possibly express my feelings for your unwanted pain and sadness enough.
To face each day in life is a very hard task under any normal circumstance , but to face it each day knowing that you suffer from this terrible pain and anxiety of not knowing when you will next be struck ...deserves to be recognised as a very brave act.
I couldnt salute your strength and will power enough , and would just hope upon hope that one-day your pain and suffering may be gone ..and you can at least live your lives as normal , happy worry free people. Wit tears in my eyes .. I take my hat of to you all....be strong :)
Hi All! I am a 28 yo female. I have been suffering from cluster
headaches since I was about 14. Like most of you I was misdiagnosed
initially. I am currently having an episode of attacks and
my neurologist is away until the 14th of Jan. My GP has no
idea! I had to go and tell him (beg him) to give me a prescription
for oxygen. Luckily this seems to be working for most of my
attacks. I would like to try some other medication but I
will have to wait until my neuroligist is back! This episode
will probably be over by then.
I also have a beautiful 11 month old daughter. It is really
hard looking after her at the moment especially if I am
having an attack.
The other day I had an attack while I was feeding her her lunch
and I had to drag the Oxygen cylinder to the dining room
so I could keep feeding her. Sometimes when I'm lying on the
bed with the mask on she'll come up to the bed and want me to
play - I can't and this makes me even more upset. I'm hoping
the headaches will stop before her 1st birthday.
Hellow folks. I am new to this cluster headace stuff. I'm 43 years old and am in good health except for this new ailment. About 6 months ago I started getting the headaces on the left side of my head behind my eye. It feels like my eye is going to explode. They come and go but the cycle lasts about 10 days. I thinking, what the F is this? Well my doc says it's ch. Aint that nice. So far I've been through about 4 cycles. Anyway, all he seems to prescribe is imetrex and Hydrocodone. Neighter works very well. Anyway, I just thought I would vent a bit. Life sucks sometimes. I just hope this ailment goes away as fast as it appears. Good luck to all of you.
Do these headaches ever just go away.
Thanks for being here
hi folks...i'm a 65 year old male who has been a chronic ch sufferer since i was 17...no doctor had a clue about my condition...they all said i was suffering from sinus problems...finally, i found a doctor who had just studied this condition whic he called a "histamine headache"...over the years the only medication available to kick my CH was ergotamine...it worked but left me feeling like crap...my life saving tip came from the national headache foundation magazine article on oxygen...it really works for me about 90% of the time.....i'm now going to experiment with the anti convulsive drugs in order to kill the cycle i'm in. i had a four year remission and now i've been in season for 2 years....so, good luck to all of you out there...i've lived with this condition basically all my life!
Hello, I´m 31 years old. Today I went to my neurologist whit the results of a nuclear magnetic resonance and at least she diagnostic me that I´m a cronic CH´s. I´m so glad to be writing this in this wonderfull site.
Sorry about my english. At this moment I´m at work and YES !I can say it...i didn´t have a cluster headache since before yesterday night !!!! and I´m crossing my fingers.
About my pain I can describe it very well as all of you do, but in this moment I prefere to forget it. I become with this CH´s when I was 25 Years old but when I went to the neurologist on that moment he gave me IMIGRAN and the CH´s was only in the summer time but now it cames all of the year.Let´s keep in touch !!!
I am a 28 year old male, and have suffered from cluster headaches since I was 15.
When I first started getting them, I, like many people was misdiagnosed by my family doctor. He made several suggestions for things that might be causing my headaches. I got glasses (eventhough my eyesight is still only slightly off 20/20), I tried to avoid fluorescent lights (which was hard to do, as I was a highschool student at the time). But it wasn't until I went back to my doctor again and went over my symptoms again, that he realized the I am a sufferer of cluster headaches. What my doctor said he missed was the fact that I got my headaches everyday, at the same time.
I went for about a year and a half, getting headaches every day, with no more than a few weeks off at any time. After reading some of the testimonials on this site, I consider myself lucky that my clusters would always come between 7am and 11am, and not at night. I can remember the couple of occasions that that actually happened, and I can think of better ways of being wakened than the feeling that you have a sharp stick suddenly being poked into your eye.
Anyway, after an appointment with a neurologist, it was determined that I had cluster headaches. This doctor prescribed daily Cafergot and Verapamil. After a few weeks, I had to drop the Cafergot, because I found it was keeping me awake at night, but I stayed with the Verapamil.
I don't know if it's got the same names in the US as here in Canada, but I started by taking 240mg of Isoptin SR every day, with my doctor's plan that, once the cycle is broken, I should ween myself off the pills. This hasn't been the case, as, without fail, every time I attempt to ween off the Isoptin, the headaches return within a day or two. That is actually the reason I found this site. As I stayed with a friend over New Year's Eve, I put my pill in my pocket on my way to breakfast but forgot to take it (goes to show that I can't in the least disrupt my regular schedule). I discovered later that evening that I still had the pill in my pocket, and lo and behold, Jan. 2, 9am, I get my first cluster in years.
So, the Isoptin has been working for me, and with no real long-term side effects my new doctor (the first one reached retirement age) said if it holds off the pain, keep taking them. The only side effect I had was feeling light-headed once in a while. I once passed out upon getting out of bed and went jaw-first into the edge of my desk. So, I tried lowering my prescription of Isoptin to 120mg.
This has been a lifesaver for me. I can't imagine going through it every day again. So I consider myself fortunate and wish the same could be said for others who suffer from these headaches. I don't know how long this treatment will last, but my sympathy goes out to those who are still suffering every day. I hope that similar results can be found for you.
I am a 39 yr old male and have been suffering from CHs since I was 19 yrs old. The first time they came, I thought I was going to die. Even to this day, I can not imagine worse pain than a CH. My clusters come in 18 mo cycles and last about a month. I have not been able to identify a trigger mechanism or environmental factor that brings them on, and my doctor has not been able to find any physiological/neurological defect (of course). Imitrex nasal spray has been a God-send for me. It's the only relief I have found. I have also found that the cycle does not break on its own unless I take Inderal throughout the cycle. For some reason, Inderal eventually breaks the cycle. Then, I am virtually headache free until the next cluster comes. The only difference I seem to note between myself and many other sufferers is that I can not move at all during an attack. I have no desire to pace or to bang my head. I have to lie perfectly still in a dark, quiet place and not move a muscle. The pain is so intense, yet if I move it only adds to the pain. Even feeling my wife move in bed next to me at night is excrutiating. One thing is for sure...I would never wish this on even my worst enemy.
Thanks for providing this resource. I will continue to participate now that I have found it and will pray for a cure for all of us sufferers in the meantime. Regards to all of you.
I am looking for help. The only help my doctors have are drugs and I am sick of that. Sincerely Ray
I am a 39 year old female and have been suffering from cluster headaches since I was 15 years old, I get these headaches about every 2 1/2 years or so and they stay for about 3 to 4 months at a time, they start on one side of my head and eventually move to the other side. In the years past, nothing has ever worked. I do mean Nothing! I have tried it all,from heart medcines to reflexoligy, Since Imitrex, nothing has ever worked, Imitrex is my best friend, The only bad thing is, it is a very expensive drug, and i am also on SSI. I am only allowed 3 prescriptions per month, i am running out of patients and imitrex. I now have a 6 month old Baby to take care of. Is there a better way to handle a headache when you have no imitrex ? I can't even begin to make anyone understand ow bad these head aches really are! Is there a way to make morepeople aware of these evil headaches, or d we have to educate everyone each time?
After 8 years of my husband suffering with the most intense pain that is unthinkable I am relieved that we are not alone. He often wakes up between 12:00 am and 3:00 am with an attack that lasts for 2-3 hours. He is currently having attacks 5 nights a week, and this will go on for about 8 weeks. He is desparate to find a drug that will stop the pain. I thought I would see the day when my strong husband is weeping like a child. His eye is red and swollen and you can see the vain pulsating on the left temple. It has been 8 years and he is at the end of his rope.
Hi! I am so glad that I have found a site that is so filled with lots of information on cluster headaches. My husband is the CH sufferer and I have to say that we are about to our limit on what has turned our world upside down. I am so thankful that we have an AWESOME Father in Heaven who is looking down on us. There is so much going on right now, that I don't know where to start.
All I know is that I need help. I am trying so hard to understand my husband's pain. Our children and I are trying so hard to stay extremely quiet for him while he is dealing with these horribly violent headaches. I know in my heart that the headaches are the culprit behind his anger, threats, etc. He is getting to where he is missing a lot of work. He is 58 yrs old. He's had these over the years, but they have been none stop for the past six months. Nobody around us really understands the intensity of these headaches. When we say, he has these headaches, they can only think of the kind that you take two tylenol and then it is gone.
It would be nice to be able to continue to talk with spouses of CH sufferers so that maybe I can learn something new on how to handle things here in our home.
I would appreciate any advice I can get.
Thanks!
Joyfully in Christ,
Carole
Hi I'm a 40 year old female and I been having headaches for 4 months now,there like in my forehead and nose area and I get sharp pains that shoot quickly and leave on my left side of my head sometimes the shooting pains are all over..they sometime feel like a heat headache and my ears feel clogged .I went to my doctor about 4 times was on clariton-d and metrin and then she tryed antobodics,then she sent me to physical theropy,when I noticed that was'nt working I went back to my doctor crying then she put me on antidepressant which made me sick..went to chiropractor and did'nt help..then went to ears nose and throat and he did a sinus cat scan and that was normal then off to the nuerolgist which he did a full CT scan and back xrays for inflamation..and that all turned out normal..so back to my doctor she did'nt know what she should do so I told her to give me a lower dose antidepressant so she gave me Paxil 10mg and 20mg..I'm on my 6th day now so I'll have to wait to see if that will work..My headaches don't bother me at night but in the mornings when I get up and sometimes I have pressure on the top of my head..Does anyone else have this type of headaches..I have home daycare and is hard to watch infants with a headache..read most of your comments and I don't know if mine are cluster headaches..But my thoughts are with yous that have the real bad headaches mine hurt where you don't feel like doing anything..well if anyone would like to talk or have the same as me feel free to email me..and god bless all of us headpain suffers... :)
Does this sound familiar....I'm so pleased to have found a site that understands the pain and suffering of CH. When your brain has been scrambled and your trying to hold down a challenging job and growing family you think you are going crazy. And do you talk about it at work?...No. Thanks for the site guys...first step to getting back in the saddle.
35 yrs after 1st attack discovered imitrex. Severe attacks require injection. Tablets are effective on those rare mild attacks. Typical cycle is twice a day for 3 to 4 weeks every 2 to 3 years.
My husband has suffered from cluster most of his life, but was told that they were only sinus headaches until about a year and half ago. I called 911 because he woke up in so much pain I had no idea what was wrong or what to do. While at the hospital he was disonged with haveing a cluster headache. Over the past year and half he has suffered from so many attacks I lost count. I kept track of how many days he would miss from work a month. It started out at just a few, but then became the whole month. He would wake up to get ready for work and he would already have a cluster or while getting ready one would hit. I would get so mad because he was missing so much work,but i also know that it wasn't his fault. The dr finally put him on medical disability for a while. Hopefuly we can find something that will help him.
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