Cluster headaches
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The response to this website has been so fantastic, I've had to seperate some of the messages. There were so many wonderful posts from suffers around the world, that it was taking entirely too long for the page to load.

Below are the guestbook entries from July - October 2003. 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

I am 50 years old and have suffered with CH for 9 years. A year ago I started waking up every night between 2 and 4 am with unbearable pain. I have tried so many "preventative" medications I couldn't possibly list them all. I decided to take zomig or imitrex as a preventative and it worked. I take 2.5 zomig or imitrex before going to sleep and I do not wake up mid night. I do sometimes wake up at 6am with a headache but at least I can get 6 or seven hours of sleep. I know I shouldn't take this medication as a preventative but it's the only thing that has worked so far. I suspect I will start getting rebound headaches but until I find a replacement. Good luck to everyone. Deni
Deni Kecman <>
Cleveland, Oh USA
Friday, October 31, 2003 at 17:44:26 (EST)

Hi!. Had a head injury about 4 or 5 yrs ago. Fell on a waxed floor at work & landed on left temple. Had a concussion. Ever since for no reason whatsoever I will begin perspriring profusley on that side. I can be in a freezing cold room doing nothing & my left side will be covered with sweat all from my head while the rest of me remains cold. They say this is a cluster headeache but I know of no cures except for the miracle power of Jesus. As I speak I am having one. This has caused a clogged tear duct problem on that side once. Any advice would be helpful.
Gary <>
Elkton, NMD USA
Friday, October 31, 2003 at 11:39:39 (EST)

I have suffered from CH for about 5 years now. I am taking Depakote currently, but the side effects (nausea, ringing in ears) make me so uncomfortable that I am considering a different course of action. I want to tell all of the fellow sufferers out there that I do feel your pain; I know what it is like to want to drill a hole in your head to let the pain out. When I am up at 2 am in the middle of the night crying because I'm so tired of hurting, the only thing that keeps me going is hope. Never let go of hope. God bless all of you sufferers and supporters out there.
Jeremy Evans <>
Englewood, OH USA
Wednesday, October 29, 2003 at 16:22:01 (EST)

I've been getting these evil beasts for a while now, and this site has been so helpful in working out a diagnosis. Thank you!
Joanna <>
London, UK
Wednesday, October 29, 2003 at 08:34:18 (EST)

whoops...excuse my grammar and spelling below..i didn't check after I sent it
Tuesday, October 28, 2003 at 21:21:35 (EST)

Well am 51 and have been getting CH since I was 13..well ist headaches..then clusters when I hit 20. I've tried and done it all with some success at times.(drugs, HA clinics, ENT surgery, Chiro etc etc) I've taken Verapimil 240mg for the last several years all the time. When the clusters come I double up. A few years back I staerted also taken sansert when in a cluster. Seemed to work after several weeks. The last 2 bouts I dropped the sansert and now use Depokate 500 BID.Last time I was low in introducing the Depokote and sufffered for several weeks. This time I was still slow in introducing it but after 4 weeks 2 days am not getting them. Just tired but thats ok. After a 3 or 4 weeks I'll taper off if I don't get more HAs. I need to ask my doctor if I can double up the verapimal and go for the Depokote 500 mg BID right off the bat for the next time. Advice to all though is to give whatever your neurologist (not doctor) orders for you a chance (yes you wish the pain would go away). My neurologist had suggested these same to drugs over 10 years ago and I wouldn't give them the trythey deserved. To all, hang in there and remember for most of us episodic CHs,when having the pain remember I think about it that the pain will soon stop.
mike <>
Tuesday, October 28, 2003 at 21:17:34 (EST)

Hello, I suffer from cluster headaches.
Martinsburg, WV USA
Monday, October 27, 2003 at 20:55:05 (EST)

I am 27 and have had these stupid headaches in episodes since I was 18. I am a martial artist and infantryman in the National Guard, and I am healthy and strong,yet these headaches destroy me. We just have to be determined and keep exploring treatment options, together we will defeat this monster! Thank you all.
Jason Aubin <>
Seattle, Wa USA
Monday, October 27, 2003 at 13:50:32 (EST)

Hi, I am not a clusterhead but the wife of a 25 year sufferer. Mark has been in a horrible cycle starting about two weeks ago. His headaches are every 1-2 hours and I know he is taking too many imitrex injections. It scares me but I am not about to tell him he shouldn't be taking so much. As any supporter knows, it is an awful thing to witness. The feeling of helplessness is almost overwhelming! Any words of support would be great!! I really appreciate this site, it has been both a wealth of info and a place of support for us both-thanks. The only thing Mark is taking right now are the imitrex injections-2mg at a time. He is going to the doc today to try prednisone again. Wish him luck and say a prayer, Lori
Lori <>
Sarnia, Ont Canada
Monday, October 27, 2003 at 11:57:53 (EST)

This is disrupting my whole life
Philadelphia, pa USA
Monday, October 27, 2003 at 10:44:01 (EST)

I am suffering from high and low blood presure along with a painful headach after intercourse or masterbation , i can only decribe the pain as a shooting pain through my head there. i may not have at the time but it is there just as im begining my climax but massive pain instant pain.i have been to doctors but they are aware of the type of complaints but no answers .
Jayne Fernley <>
poole, dorset uk england
Monday, October 27, 2003 at 08:40:11 (EST)

i am 56 years old and have been suffering from cluster headaches for 15 years. I have tried immitrex, zomeg, and maxalt, it provides only temporarily relief. It has taken over my life. it seems no cure is there , any suggestions?
joel cornfield <lillianandjoel>
toronto, canada
Sunday, October 26, 2003 at 12:35:06 (EST)

i am 73 years young. have not had a bout with c h for aout four years or more. dont know why---- i used to get them every spring at the end of school and they would drive me nuts. i had medication (don't remember the name) that would eventually stop he pain and i would wake up ok. i am now having trouble with my vegus nerve. about the same pain, but lasts only for a nano second.
jim <>
south bend , in USA
Saturday, October 25, 2003 at 21:03:15 (EST)

I've finally found a place where people not only hear what I am saying but understand as well. Thank you!
Sara <>
Fremont, CA USA
Friday, October 24, 2003 at 18:39:14 (EST)

It's back!!!I am 42 years old and I have been diagnosed with CHs for 21 years. I am heart-broken...I thought I had beat it and now it's back and my present doctor is treating me for regular migrains and it's pissing me off!!! I have another appointment with him this aftenoon and he better be ready for an ear ful of fix this now!!!Zomig sucks.
Jeffrey Shiels <>
Wellington, FL USA
Friday, October 24, 2003 at 11:55:55 (EST)

I have suffered for along time with headaches and have been calling them migraines. Imitrex works a lot of the time. My pain is usually over one eye and the back of my haed or neck, sometimes all the way across or usually on the same side as the pain over my eye. They usually do come and go for days, weeks, or months at a time. I am now having haedaches for about a month almost everyday. Because I do get rid of it each day, but not alwways, they can last for 2 days. Tomorrow they may go away for days, weeks, or months. I do take darvon everyday for cronic hip pain and I can take 6 or 8 of these besides my regular amount and that will help if the imitrex doesn't work. I can take 6 codeine pills if my doctor will call them in, which he will do every few months, but not every week or so, of course this only if the imitrex doesn't work. Anyway what I am wantted to know is does this sound like cluster headaches or migraines and is there a doctor in San Antonio that could help me better with this. I am on Sucure Horizons insurance.
Robert Riemenschneider <>
San Antonio, TX USA
Thursday, October 23, 2003 at 12:22:23 (EST)

Finally! People who know what I am going through. I call them migraines, you call the CH, guess they are one in the same due to the perfect descriptions of this devil that tries to destroy me off and on throughout the year. Actually, right now I am on the outs (I hope) of my lastest Battle. Still have the lingering stiff neck and almost as though the right side of my face is sagging, and I do think my right eye could actually pop out of it's socket. Even any sharp movement of my head feels as though my brain is banging against my skull.Has the fluid aroung my brain evaporated?? I have suffered with these headaches for 15 years, not constantly, but the reminders of what once were are HELL! No one knows that doesn't suffer these themselves. Was convinced when this one came on 2 days ago I was "stroking out." Right side of the head, right side of the face numb, left arm numb, fingertips, didn't actually know if I would be able to speak much longer as I fekt it coming on. Had my 6 year old get daddy from outside for fear I wouldn't be able to talk very much longer. How do we know we are not having an anurism or a stroke?? Scary stuff. Dr. has prescribed Flova, I shall see I suppose.
Michelle <>
Granite, Il USA
Thursday, October 23, 2003 at 09:47:17 (EST)

I've had debilitating sinus headaches off and on for years. Not "really bad" headaches, but the kind that sometimes felt like someone was ramming a broom handle into my eye socket and that would cause me to awake in the middle of the night in such pain that I sometimes could do nothing but roll around on the floor. Crazy scary stuff, OTC medicine was no help and even codeine wouldn't do a whole lot. Various doctors had various diagnoses, and I tried every pill and spray out there with no relief. I finally found an ENT doctor who knew my every symptom like he was inside my head, another sufferer. What luck! He put me through a CT scan and decided to do a few sinus surgery procedures. $30,000 and a horrible procedure later I didn't snore at night anymore, and 3 months after that the headaches returned on ocacsion, in fact about the same as before. I was crushed. Luckily insurance paid for most of it. I concentrated really hard on the pain and convinced myself that it was somewhat improved. I revisited the doc on various ocacsions and he admitted that the procedure did not always work, and started throwing more perscriptions at me. He also wrote me a scrip for lidocaine solution which I was to invert my head and drop in my nose at the first sign of a sinus headache (he did not give nearly the detail as is on this site, unfortunately). It sometimes actually works, weird enough. He theorized a sinus turbinate was getitng inflamed when I lied down at night and was sending sympathetic pain messages to the orbit of my right eye. Sure, why not, a turbinate. I bought a "pulsatile sinus irrigator" which is like a fancy Water-Pik for the nose. Aside from getting some good laughs from the wife, another waste of money. My headaches are always the same: about 1-2am I'll awake, excruciating pain behind and to the side of the orbit of my right eye. Came on out of nowhere, might last 20-180 minutes. No sensitivity to light or sound, no nausea (in other words this is not migraine). This happens maybe a few nights a week, for maybe a couple weeks at a time, the cycle repeating a few times a year. On more rare occasion it'll happen in the evening at maybe 8-10pm or in the early afternoon at noon or so. I'd been free of these for some months but a couple nights ago they began again. And last night in a stroke of luck I found the website on cluster headaches. Not only did I learn I'd wasted time, money and sufefring on approaches to sinus headache, but in fact what I had was not sinus headache at all. I'm greatly looking forward to learning with you all and finding a good approach to dealing with this, assuming I don't land myself in prison for killing the ENT doctor who convinced me I needed a Roto-Rooter up my nose. Luckily I have good insurance and live in a big city, so I'll be visiting a neurologist and/or headache specialist in the very near future.
Jason F.
Dallas, TX USA
Thursday, October 23, 2003 at 09:38:51 (EST)

Im an 11 year cluster vet sessional this time they started hard this time only two weeks in and Im on my living room floor screaming expletives I could be arrested for. crushing the sides of my skull untill I swear I could hear it eyebrow balled up into a knot flows like a twisted cableof anguishwd muscle all the way to the middle of my shoulder blade, where it seems to be anchored with a knife.every year from sept. to nov. my molester comes making me feel like a rape victim. and i am never strong enough to stop him only to carry on and live with the secret.Evenif you tell someone they dont really believe it could be as bad as you say because they themselves have never felt such pain therefore they can never really imagine such pain I envy them their bliss ,Truly Pain of the magnitude Ive felt is terriffying. For the first nine years i thought this has to be terminal anything thaT HURTS THIS BAD.has to be fatal there were isolated peak moments when I would have gladly crossed over to escape an icepick diving into my head like a sewing machine needle,while the sewing machine needle is working my jaw muscles.oh what fun it is to ride in cranium splitting pain the onlyu kind of pain that makes you look at a shotgun like a lover.anyway im better know I ve surfed the peak and now I am cycling down,but I was suddenly turned on to maxalt-mlt. it disolves on the tongue and although i havent tried it on a peaker,it washed this one away immediately.Its non -narcotic so no losing those half days on percocet.I have fought this savage fight long enough to know what im fighting when a doctor dont believe you and the headache comes a knockin and you run head long into a wall to knock yourself out to escape that pain then fuck that doctor.try maxalt -mlt I did for the first time today and I swear I feel like I got my life back or at least the first signs of any kind of release since I first got 22 Im 34 I AM ALIVE thank you for listening
jon donham <>
lakeland, fl USA
Thursday, October 23, 2003 at 04:11:42 (EST)

Just want to let you know you have a wonderful and informative site. Thanks, Sara. Medical Transcription
New York, NY USA
Wednesday, October 22, 2003 at 19:50:03 (EST)

Hi all, I been battling the beast as long as I can remember. I'm 42 now and after years of remission "there back". It's was great to find this Web site and not feel so alone. Great job, great info, its been a lot of help. I'm trying the lith carb and pain killer road this time. Not sure what to expect. Finally found a Dr. in CT that not only listened but was knowlegable. Anywho just wanted to say thanks fer a great site. Dweeb
DWeeb <>
Danielson, CT USA
Wednesday, October 22, 2003 at 14:36:59 (EST)

Wednesday, October 22, 2003 at 13:34:27 (EST)

I know I signed up here last year- but in the middle of clusterheadaches & painkillers....I can't recall my password! Anyway...what is the word on Magnesium, Feverfew, B2 & Melatonin in preventing cluster headaches? I want to get ready because I fear by Dec 12th...the pain from hell will be back. I hate to take channel blockers, etc...and they don't seem to work anyway! I rather prevent the headaches than treat them when a red hot poker is being driven into my eye socket. Any feedback is sure welcomed!
Carl <>
Souderton, PA USA
Tuesday, October 21, 2003 at 20:08:29 (EST)

I have only recently attributed my migraines to CH through a little research of my own and a lot of questions to my neurologist, ENT, Allergist, and Primary Doctor. Finally, I am headache free except for occasional, short bursts of those "ghost" reminders of the pains of yesteryear - potential migraines I call them. I am taking TOPAMAX every day - 75 mg. It is a seizure medicine and it has some minor side effects - numb fingers, weight loss, tingling skull, bad breathe. They're all worth it to me. I couldn't ask for anything better. I haven't been pain free this long in years. I didn't know what it was like to not suffer from bulging pain around my eye and into my head. I can't believe I had learned to live with it for so long. Topamax has not eliminated my pain - the reminders are there - I feel sudden bursts of pain that diminish in 5 - 10 minutes and return in a few days but the episodes are short and the time in between seems to be growing longer. I have high hopes that this will only get better over time. I have been on Topamax for only a few months. I will update this site with my progress. Good luck everyone. I hope you find some relief also.
Tina <>
Phoenix, AZ USA
Tuesday, October 21, 2003 at 11:41:35 (EST)

I had suffered from cluster headaches for 21 years. The pain was totally unbearable. One session lasted for 36 hours. If I had a gun I may have ended it. Since I moved to Salt Lake City in '94 I have not had one bout. Maybe the change in elevation?
George Kamor <gkamor@ccsutah>
Salt Lake City, Ut USA
Tuesday, October 21, 2003 at 09:20:35 (EST)

hello finally today at age 34 i have an answer to the incredible pain i have been suffering.I look forward to reading your experiences to help me understand what i am about to deal that it has a name(the devil)i know where to go and get at least some doctors have been slow in diagnosing my condition but there is no question now what i have been experiencing.may god have mercy on our aching heads
Jeff Williams <>
Ashland City, TN USA
Monday, October 20, 2003 at 17:35:54 (EST)

Wow, I am not alon!!! I'm 42 and have been having CH since High School. I have been in remission 3 years and my episodes have just begun again. I have found that when I drink very warm liquids at the onset of a CH, that the duration is much shorter. Greg
Greg <>
Cleveland, oh USA
Monday, October 20, 2003 at 15:55:48 (EST)

Hello. My name is Tom and I am 36. I have had clusters for 8 years and as I get older they are getting worse. I am a very athletic and active 36 year old. I am very interested in getting to learn more about my attacks and to hear how others cope.My hardest thing to handle is that others,that don't suffer and don't know what CLUSTERS are non-compasionate. They don't know and it is hard to get them to feel for ya.Not that I want tears and sorrow but just a undestanding of what we go through. I don't like to be a pill popper and I cope with time not narcotics. I have turned to chiropratic and acupuncture for natural cures and it seems to work for temporary relief. Funny that I type as the demons awake on my right side and work towards the light of my eye for yet another adventure.....and for how long...they determine. To feel my heart beat behind my eye is the worst feeling I have. Thanks for the opportunity to share with others and look forward to hearing from all.
Tom Barnes <>
Aurora, Il USA
Sunday, October 19, 2003 at 20:30:35 (EST)

Thanks for this site. I also suffer from Cluster Headaches Have picked up some very useful Info. on this site.
Emmett Sullivan <>
Denham Springs, La. USA
Sunday, October 19, 2003 at 12:32:54 (EST)

my husband suffers from cluster headaches.i do not know how to help him. i would like to help him.i would love to see him free from them,but it seems like nothing helps.
Friday, October 17, 2003 at 22:59:29 (EST)

My name is Jon, sorry for the length of this post, 20+ years is hard to keep short but if you have recently started your dance with the beast and are frustrated Hopefully you will try some of my suggestions at the bottom of this rant and they may even help you to cope while you and your doc are trying to find the mix of meds to help you. I have had cluster Headaches (diagnosed) since about 1981. I didn?t even know that there where more than 1 type until finding this site, mine were chronic (day and night year around or it seemed) until about 2.5 years ago when I met Dr. Vandinbosh may he rest in peace now, he was a sufferer of CH as well and the only other person I had meet who suffered them. He was the best, God willing he is pain free and in a better place now. I have spent sooo much money (No Health Ins when I was younger) on MRI's, neurologist, ergo stats, acupressure, acupuncture, Chinese meds, (other meds but can't remember them all) even had two of my back molars pulled when I had heard or read about some sinus sufferer?s finding relief from HA's after having the procedure done (late 80's) - seems the sinus cavity drops and somehow alleviates the pain. I haven't seen any post about gritting your teeth, but I have done a really nasty job on mine. Nothing worked!!! After getting out the latest book on the subject Dr. Vandinbosh gave me a script for a Beta Blocker and something else but I don?t remember now what it was and before I had finished the full bottle I was (I thought) cured no more CH's. But now the beast is upon me again, I was shocked when it happened about three weeks ago, I went to my new Doctor for what I though was a cold or the flu, She said it was a sinus infection and gave me the meds, about the same time the clusters started waking me 3 to 4 every night behind my left eye, sweating forehead, stabbing pain, sinus stuffed, and as many during the day. I had not appreciated the luck of being pain free for those 2+ years, I like many of you thought I had outgrown them, primarily because the Doc that originally diagnosed me told me that they would go away when I was older. Denial at first but the demon wont allow that for long, after the 3rd week of pain and total exhaustion from lack of sleep, I knew that CH's are back and not going away with the infection. Went to another Doctor and asked him to give me the Beta Blocker, pain pills and he suggested steroids, only hope it does the trick once again. After seeing this site and reading all the material and post's I feel so naive about the subject, I never would have found you if they hadn?t crept back into my life again and I am glad that I have found you, after Dr. Vandinbosh passed away I find myself missing his counsel, no-one had ever really understood my demon up until then and to help me to function again was the biggest blessing I could never have let myself imagine. I would like to share with all of you what I had done for so many years to help me survive and hope that some of you might find it helpful to cope as well: Remember that I did not have health insurance for many years and couldn?t hold a job for long anyway so money was ALLWAYS tight. When I was able to afford the doctors visit and pain killers I always and still do cut them into 2 or 3 pieces. My clusters always started and ended with shadows then progressively got worse usually for six or seven weeks, then they would go away for a few weeks and come back. It took years to figure out and I can't remember now what made me do this for the first time but I would take the aspirin (depending on where I am in the cycle I knew if it was a K4-5 or Higher) or pain killer. In the push up position I put my feet on the bed about 3 foot up behind me and do push-ups, you see I always thought that the sinus pressure was a possible cause, then I would push to exhaustion, sometimes depending on the K level I would take more of whatever pain relievers I had and do it again until I felt them go away. Sometimes I experience a popping in the sinus area and they will drain, shortly thereafter the CH will dissipate and I am pain free and exhausted for another 2 or 3 precious hours. I was in a car accident a few years back and the doctors wanted to fuse L4 and L5 in my lower back, asking me if the pain was too great?? They just don't know what pain is and I never had the procedure done, so anyway I cannot put that kind of pressure on my lower back anymore without suffering considerable back pain afterward and have to do push-ups on my knees now, it takes longer but gives me something to do while I suffer them. I also have to keep my weight down, drink mostly water or clear liquids, no dairy products or chocolate, no perfume and keep the sunglasses on during the day, also make sure there are no oil leaks causing exhaust fumes in your car, keep the AC filters clean/new and vacuum the carpet frequently if you have it. Hope this helps someone out there. I hope they find a cure for all of us someday, and expect it will cause everyone one of us to be the most productive and successful people on earth, I always knew that if I ever where to get past the CH?s I would be invincible... Good Luck and best wishes to everyone.
Jon kelley <>
Miami, Fl USA
Friday, October 17, 2003 at 18:58:38 (EST)

I've suffred from these Headaches since High School.Now im almost 62 , It's been nine years since my last horrible attacks .untill just resently I am starting into the cycle again . They last usually up to 5 or 6 months , then gone . I haven't found any medications that has helped me. I have had 3 cat-scans,they found nothing , Guess thats a blessing !! Will there ever be an end to this beast that torments our lives ? I always felt that no one really knew the pain I was going through. Since finding this website I realize that I'm not alone. This is my frist post `
Pat <Pat@Williamsons.Com>
Mountainburg, Ar USA
Friday, October 17, 2003 at 16:47:22 (EST)

I just wanted to say Hi to all of at this web page. I haven't been diagnosed with CH's, but after what seems like a month long headache, and talking to a Paramedic on a ride to the ER. He suggessted I look you up. When I read the symptoms that you had listed, my wife and I were very excited to know that someone out there knows what I've been going through over the last few month. About 4 years ago I had one @$$& of a headache. It got to the point that all I wanted to do was stand on my head in a wash tub full of ice. Now since August 17 I have had maybe 3-4 Headaches a week and now to this date it seems like it just won't leave me alone. The doctors finally put me on Verapamil and Maxalt. Sometimes the maxalt works and sometimes not. Anyway maybe some day soon I will finally find out what's wrong with me. In the meantime I will continue to view your page in hopes that some day we can rid the demon for good. Thanks For Your Time God Bless You All Allen From Tenneessee
Allen Cole <>
Big Rock, Tn USA
Friday, October 17, 2003 at 16:32:36 (EST)

Hi, just wanted to share my experience in this forum, please feel free to e-mail me if you think I can be of help. I have had the CH since I was 16 (I'm currently 32). As I grew up I noticed the aches (3-4 times a day, two episodes a year and lasting 10-12 days) on every new episode were actually getting more painful. At that time I never paid attention to them and let them just go away (no medications at all). Then I was 20 or so and ended up in the ER 'cause I couldn't stand it anymore. My symptoms back then were basically just a strong oppresion in my temple, upper jaw ache and unable to stand noise and light. They diagnosed me with migraine so I was precribed with Cafergot which worked for me just for a while, 'cause in the next episode it just didn't work. Then I went through several similar medication, tonopan, sydolil, every single OTC drug combo with caffeine, ergotamine, aspirin, ibuprofen, parecetamol, etc. All of the worked fine at first but after a few days the seemed to be loosing strenght. I basically had the CH on my left side but ocassionally some episodes were also on the right side. Then in January 1999 a colleague of mine who had exactly the same symptoms told he was diagnosed with CH and showed me an article on Times magazine about CH. At that time I was in a CH espisode (I will never forget how horrible was that fly back to home) and then I had a long 4 year remision period, only shadows in between, but no pinful CH at all over that time. I am just in the end of a new episode which began 1 month ago, this time the beast stroke me on the left side for 2 weeks or so, had a 2-day rest period and then it switched to the right side but the CH wer stronger than ever, really unbearable, and worst of all none the medications did work at all for me anymore, even Imitrex pills stopped working at certain moment. This time I ended up with a Neurologyst who I learned after an exhaustive reasearch had broad experience in chronic patients. Next week I am going to go through a micro-surgery that actually blocks a nerve on the side of the face. Doctor has told me it works for 3 out of 5 patients with chronic CH, and the CH are gone forever. I decided to go for the surgery because I am tired of this CH and I don't want to be taking pills for the rest of my life; probably my problem is CH right now, but in the future who knows if I'll end again in the ER with a chronich gastritis or ulcers. The surgery lasts a couple of hours and you can go home the same day. Hope this helps, I believe I will post a bew message after I pass trhough the operation. Good Luck, and be patient, this nightmare has an actual cure.
Cristobal Avina <>
Mexico City, DF Mexico
Friday, October 17, 2003 at 09:51:07 (EST)

Hello Fellow Sufferers. Its good to know I am not alone in this pain, however I wish that we could all get well soon.
Larry Shipley <>
Las Vegas, NV USA
Thursday, October 16, 2003 at 03:26:01 (EST)

I am now in my fourth month of my cluster episode after being pain free for over a year. I must admit that I like my butts and booze and the clusters are triggered by alcohol. Of course the genius that I am I keep drinking hoping that yesterday's was my last. I have a very understanding MD who has given me a PRN on Imitrix which does the trick. However I do feel guilt that I am abusing the drug when I insist on drinking. I realize how hard it is for sufferers to obtain Imitrix and I am looking for any suggestions short of AA to curb this problem. Thanks for letting me vent.
Richard Long <>
Baltimore, MD USA
Wednesday, October 15, 2003 at 18:12:24 (EST)

great site. glad to read that I'm not the only one !
Barbara <>
Brussels, Belgium
Wednesday, October 15, 2003 at 14:57:52 (EST)

im 50 now and i stearted getting cluster headaches whe i turned 30.after 2 years and 2 series of attacks a doctor suggested acupunture.i had a daily session of acupunture and after 1 week the headaches were gone.and they didnt come back the following year!2 years after the 1st acupunture treatment they returned so more acupunture.this time they went away for 4 years.again more acupunture,this timethey were away about 5 years.and this is the way it has gone on.acupunture has really helped me.i recently met a fellow sufferor and it is because i wanted to help him that i found your website.i urge fellow sufferors to try the way my headaches are 9 or 10 on the kip scale
steve <>
taiwan ex uk
Tuesday, October 14, 2003 at 12:17:28 (EST)

Hi, I've been suffering from cluster headache for over a year now. I've never had them until they started up. I didn't know what was wrong with me and I talked to my Aunt that's a nurse, but she just told me to write down all the symptoms and the times in which they accured and let my doctor know. She told me what they were and I've been suffering ever since. They hurt so bad and I don't know what to do about them. Taking asprin doesn't help...they don't go away. I'll feel pain for awhile and I just push my hand against my head and feel like falling to the floor screaming. It's a horrible pain. I don't know what to do about it. What should I do? Does anyone know.
Stephanie <>
Mesick, MI USA
Tuesday, October 14, 2003 at 02:08:10 (EST)

Soooo glad I found this site. I've been suffering every 3rd or 4th year since 1987 and my bouts seem to be coming back. Doc has me on Steroid burst and verapamil. So far only shadows, I can live with that. Hope this breaks my cycle. It's not easy to stay strong and possitive for months and months. ( my heart goes out to you cronic clusterheads.) Doc also told me today they stopped making Sansert. Figures, it worked last time after awhile. I am waiting for my password for this site to come in the email. In the meantime I would really like to hear from anyone via email. Thanks,
Phil <>
madison heights, mi USA
Monday, October 13, 2003 at 15:29:38 (EST)

I only want all who suffer from CH's to know that it hurts not only you to live with this unforgivable pain and seamingly unbarible pain, but the ones around you who love and care for you so much suffer too. We feel so helpless that there is nothing we can do for you when your going through these epesodes and that we do wish we could not only take one of these from you but share in them. Thats what a person who loves you wants to do. Is not only share in the good times of life, but share your pain too. I preyed to God that he may let me share in the pain of my love Shellie Masini if he would not take the pain away. She scolded me in telling me not to prey for that, that I did not what this pain. Well I can not describe the pain that I go through when I have to see her go through these. Remember this that your loved ones are always there for you and do not give up hope. As you have to endure these monsters, your loved ones are here to help battle them with you.. Always.
Bryan Ferguson <>
Mesa, AZ USA
Monday, October 13, 2003 at 03:38:21 (EST)

I have has cluster headaches for over 15 years now. When I go to emergency rooms they look at me like I'm crazy. Usually by the time they look up in a book, and relize what it is, my headaches are gone. I thought that I was over them 4 years ago, but they came back 2 nights ago. I'm so glad to find a web site that offers what yours does. I saw one add posted, no name? He sounded concerned about the pressure that he put's on his eye (will it cause damage). I can't say for sure, but my vision in my left eye is worse than my left(mine are always on the left side). Simply knowing there are other's that have the problem, mean's alot. Although I wish no one ever had it! It was especially nice to read about some of the same nights that I have experienced, and probably will in the next 2 hours. Thanks You for such a great site. Sincerely, Rick Gainous
Rick Gainous <>
Greensboro/Wilmington, NC USA
Friday, October 10, 2003 at 23:37:11 (EST)

I have suffered with cluster headaches for a long time but was just recently diagnosed. My doctor gave me verapimil which seems to be working, but it's only been two weeks so I really don't know yet. I'm keeping my fingers crossed!!
Nancy Kenyon <>
Modesto, ca USA
Thursday, October 09, 2003 at 21:11:39 (EST)

Just discovered this site. Finally someone who knows what I'm dealing with. This episode started 11-12-02@1330hrs. My life has two distinct separate parts. The 43 years before this attack and the last 11 months. I've been off work since Jan. due to the pain. Doctors that don't know squat have been learning as they go at my expense. Finally went to Diamond Headache Clinic with mixed results. Doctor I was seeing here in ID moved out of the area and I had to wait 4 months to get in with another one that knows anything. But the wait seems to be worth it. She's taking me off some of the drugs I'm on that haven't helped and starting over to identify the areas in my brain that are causing the pain. Mean time she has me on Avinza to control the pain without going to the ER. Had one jackass doc tell me that pain wouldn't kill me, really wanted to share some with him. I'll go some days with just a shadow, then next day a series of CH 8-10 lasting 1 to 5 minutes. Or one solid 9 all day long. Glad I found this site. Mike
Pocatello, ID USA
Thursday, October 09, 2003 at 04:30:09 (EST)

Hi, I'm nw to this site so please bare with me. About 3 years ago i suffered from extreem headaches and after being to see my doctor and having MRI scan, nothing showed up and my doctor couldn't exlain it. I used to get them all the time but then one day they disappeared and untill recently i never had another headache again. But now they have came back with fury. I went to the doctors this morning and they now think it is cluster headaches. I hve never felt pain this bad before it's really disrupting my life at the momen. But it's nice to know i'm not alone
amanda <amandastmpy>
Fife, Scotland
Wednesday, October 08, 2003 at 15:10:21 (EST)

I'm 39 and I have been suffering for 9 years with the "beast". 20mg Imitrex nasal spray at the first sign of the headache will drastically minimize or PREVENT the pain, without the meds it's one and a half hours of head banging, fetal position, crawling, "oh god"-ing speaking incoherently. I also work at a hospital and 10 minutes of 100% oxygen will stop a full headache in 10 minutes. I just started a cycle this past Thursday and the prednisone today and hope it will prevent them.
Troy Fultz <>
Cleveland, OH USA
Wednesday, October 08, 2003 at 12:40:54 (EST)

I am a 25 year old engineer and I have dealt with cluster headaches since I was in junior high, about 12 years old. I would classify myself as a chronic case. I honestly can't say when the last time I went an entire month without a having one. They have gotten so bad that I rarely feel free to go out and enjoy myself. I never want to be to far from home in case of an attack. I think most people are disbelieving in the fact that your head could actually hurt that bad, or that it could occur so often. Sometimes I wish people could have a small glimpse of what I go through, but I wouldn't wish this type of pain on any one. I've tried all the common medications with no luck, because each attack only last a little over an hour it doesn't seem like any of the medications have the time to work before it goes away on it's own. The best solution for me seems to be to get enough rest and eat on a regular basis, but this only seems to cut a small percentage of the headaches I have. It by no means gives me the relief that I can live a normal life. I used to manage with them by just resting. This was possible when I was in school, but now with a full time job I don’t have the luxury of going to lie down for an hour. It also seems that since I can’t deal with the headache by resting that I now suffer more often than I used to. Not only do I have more attacks, but now I have a dull headache all the time regardless if I actually get the full blown attack or not. Is there any out there that shares my pain or better yet is there any one that knows of a source of relief. John
John Chadwick <>
Houston, TX USA
Wednesday, October 08, 2003 at 08:41:25 (EST)

Not again!!!Don't know how much more I can take.Please anyone out there found any thing that truely works,please please let me know,6 weeks in this bout,I just wanna call it a day,even the oxygen gave up on me.
Debbie <>
northants, uk
Wednesday, October 08, 2003 at 08:01:12 (EST)

Hi My names Tammy, and I just thought I'd share what I got through, I'm 25 and have been suffering with cluster headaches for the past 8 years, I have tried so many different things, like most of you, but the only thing I find that works for me is Maxalt, I have the wafer tablets, I find they get rid of the pain in about 10-15 mins. I count myself lucky as I only get the headaches once a year, for a month and I get mine when the weather drops in temp, from Summer to Auturm, I'm going through the headaches now, I had 1 this morning which was at 5am the same as the night before, no doubt I'll be getting the again this am. Anyway, if you havent tried Maxalt, try it as I have found it a god send, before I felt like I was going crazy as the pain was so bad. If you do try it, I really hope it works for you like it does for me. Tammy
Guernsey, UK UK
Wednesday, October 08, 2003 at 07:27:12 (EST)

been a cluster sufferer for over 20 years, at first, i didnt know what they were, but the pain was really bad, i was taking 2 tylenol every 30 minutes, and they finially went away after 6 to 10 pills, then after a couple years, after seeing a nueroligist, mri's, cat scans, not eating these foods, and not drinking, and not smoking, and all the other stuff, that they tell you not to do, i finially found a doctor in bloomfield, that understands, and gave me some of the medicines that i've read about here, what worked for me is the calan, and steroids, until this time, i took same, and then went to the dentist, and started root canal, on right side, and the cycle started all over again, and the pain is worse than ever, this time 2-4 headaches per day, with tenderness on the right side of my head after and before h/a, thank god for initrex, its the only thing that helpes, and i hope it doesnt stop, or the next thing is my 38 police special, ive rambled on long enough, sorry, but im subsiding from a h/a, and this helps, thanks for this site, and if i can help anyone dont hesitate to email me, cheers frank d.
Tuesday, October 07, 2003 at 13:56:54 (EST)

47 year old female, my first attack was in 1985 then not another until 1900. then in 1993 i have been having them every sept til march. a few years the went all summer long . have tryed almost evry med there is and have been on steroids for almost 8 years not off an on , lately more on than off. has anybody every tryed accupuncture and has it worked for you? a man here in my home town got relief for 8 he says or did they just go away for that long. it is hard to know about this beast. i feel like my life is falling apart not being able to afford the meds and unable to continue without them. please e-mail me back with any info any of you may have. thanks sandy
sandy <>
lewistown, Mt. USA
Tuesday, October 07, 2003 at 12:27:03 (EST)

Praise the lord, relief in 45 minutes! (using trex spray). But I can't help but feel sorry for all you chronic sufferers out there. My attacks are mercifully controllable so the periods of intolerable suffering (kip8) are short (20 minutes to 2 hours, daily or twice daily). And I always feel like a whiny nuisance when I call my Neuro. He deals with much worse cases than little me. And MS patients. But when I'm doing that dance it's very real. Anyway, nice to know there are others in the same ugly boat. Wish I weren't back here. I've been blessed with a WHOLE YEAR of remission! Anyway that's it for now. Time to try to salvage the rest of the night's sleep. At least I'm alone here, not disturbing anyone. Happy heads all round! Michael xx
Michael Lefebvre <>
Montreal, Qc Canada
Tuesday, October 07, 2003 at 03:22:00 (EST)

Imitrex injection help!!!. 40 year old male, have danced with the "devil" for 20 years. Episodes are 4am and 8am daily for 6 to 8 months which can be followed by an all day more traditional migraine. Prednisone,cafergot,verapimile,oxagen and topamax no help. Imitrex injections have been my only help. Very effective and alows me to live a somewhat normal life. Healthcare provider now classifies Imitrex injections as a "medical" expense instead of a "prescription". They will no longer pay the $1632.56 for 24 injections. I can no longer afford my ONLY defense. Has anyone found away around this policy (pacific care) or a place to get Imitrex at a lower cost? Please Help. Glenn Huston
Glenn Huston <>
San diego, ca USA
Sunday, October 05, 2003 at 23:35:18 (EST)

I was inspired to write you after reading this site. Around five or so months ago- my father in law started to experience cluster headaches. He has been to every doctor in Phoenix. It is to the point where I think he feels hopeless. Every doc he talks to says there is no cure. After reading this site for the first time- I want so bad to possibly have a reccomendation for him. It is tearing our family apart- he is on morphine pretty much 24 hours a day to subdue the pain. While we were out to dinner the other night he described what you have. "alright", he says "I will go home now to lay down only to start the dance". The dance to him is the headaches that begin that are so excrussiating that he begins to almost see things. He screams and lays on the floor waiting for the pain to go away--only to know they will be back the following day. Do you have any type of advice of who to speak with in Arizona where we live? Thanks in advance for your time and any advice. Kelly
Kelly Curry <>
Scottsdale, AZ USA
Sunday, October 05, 2003 at 21:33:08 (EST)

I continue to have migranes on a regular basis. Often times they last up to 3 days. Once I got into my late 20's early 30's the pain just continues to get worse. I am currently on Flova and imitrex. Often times does not work...pain sufferer
judy carpenter <>
peoria, az USA
Sunday, October 05, 2003 at 21:19:31 (EST)

I only started getting headaches 2 weeks ago all of them have been different and they subside in a short time. My doctor prescribed me piroxicam. The main bothersome thing to me is the sharp stabbing pain that occurs above my right ear and around that area. It hits when i don't expect it. And the meds. don't take away that pain at all.
V. Yarborough <>
tacoma, wa. USA
Friday, October 03, 2003 at 22:34:06 (EST)

I have seen very little in the literature on cluster headache concerning the spontaneous disappearance of the condition but it does occur. I know because it did in my case. I first experienced symptoms when I was 12 or 13. I saw a neurosurgeon who was unable to make a diagnosis. The headaches were very brief at that time but during the next several years lengthened and developed the periodicity typical of cluster headache. I was finally diagnosed with cluster when I was 21. The headaches generally lasted about 20 minutes to a half hour, occured several times a week to once a day, for a period of two to three weeks, and then disappeared for from 12-18 months. The pain was truly agonizing but I get the impression that the length and number of my headaches put me on the less severe side of the curve. I suffered my last cluster of attacks when I was 25 years old. I am now 54. It simply never recurred after that and I have no idea why not. I was never able to identify any trigger mechanism nor did my life style change in any significant way after I was 25. I would be curious to know if there is anything in the medical literature about cluster headache simply disappearing. Presumably, people who no longer get it may feel little need to report the fact and so it may be underreported. I noticed this site and thought my experience might be of interested to those currently afflicted with the condition, which certainly, in my case, produced the worst pain I have ever suffered from.
McLean, VA USA
Friday, October 03, 2003 at 10:54:51 (EST)

After suffering with cluster headaches for nearly 45 years now, I have been headache free since beginning to take a beta blocker combined with amitriptyline - almost 3 years ago. It was on this site that I read a posting by another sufferer who stated that amitriptyline had helped her and asked my doctor about it. She was willing for me to try it and it has worked. It wasn't until I found this site that I knew my clusters were different than most. My headaches always last from 6 to 8 hours and I have one every 24 hours for a period of 4 to 8 weeks, then one every 12 hours for another 4 to 8 weeks, and again one every 24 hours for another 4 to 8 weeks. I believe the headaches stole my life from the time I was 20 until I was 40 when I found a doctor that knew what these headaches were. It has taken another 20 years to find something that worked for me. Once we knew what they were, we tried many treatments, some of which helped to give me more time between clusters. And even now, I live in fear of having them again. At the age of 65, I don't know if I have the stamina - physical or emotional - to survive another cluster. They are so very devastating. I hope by posting this, someone else may see that amitriptyline has worked for at least two people. This is the longest time I have had between clusters, EVER. So, it could be worth talking to your doctor about.
Marie G. Clark-Hill <>
Paola, KS USA
Thursday, October 02, 2003 at 22:24:31 (EST)

hi there i have been struggling with headaches for a almost years now they say its chronic tension headaches been on numerous tables, nerve, migraine and nothing seems to help landed up in hospital a couple of times but still tensin head aches i am really down and out now and just cant seem to handle it any more
natasha <>
south africa, cape town south africa
Thursday, October 02, 2003 at 01:29:40 (EST)

Greetings, all ... Another CH sufferer joins your ranks. Bill
Bill <>
Rahway, NJ USA
Thursday, October 02, 2003 at 00:56:51 (EST)

I have been suffering from culsters headache for over 6 years.
Rick Brown <>
Lake City, FL USA
Wednesday, October 01, 2003 at 23:42:09 (EST)

I'm a 30+ year cluster survivor. Didn't know a www site like this existed. I'm just coming into season after being free for about 3 years. I've got a feeling this cycle is going to be the worse one yet.
Bruce Melton <>
Leesburg, GA USA
Tuesday, September 30, 2003 at 14:12:09 (EST)

hi there i,m from sunny Florida stumbled in to this website i,m 53 male don,t know about cluster headache, my migraine i think, terrible pain temple area my wife Marciaheard about eating bananas that they have a high potassium level , stopped eating anything with high potassium levels and headache seem to have slowed down a lot. i,ll describe mine extreme pain temple and eyes area, for relieve, i take hot shower with water beating on neck, lay down dark room no lights on, no phone ringing,sleep after couple hours pain has become where i can handle it Bob
Robert E. Flora <>
riverview, FLl USA
Monday, September 29, 2003 at 11:27:02 (EST)

I've been suffering cluster headaches anually for the past 10 years. Only in the last 18 months have I discovered what they are - most doctors didn't seem to understand my symptoms. Finally I read a diagnosis and could not believe how accurately it described my symptoms. I am in a 'cluster season' at the moment. Last Thursday I went to the emergency department of the hospital screaming for oxygen and stonger pain relief. 3 nights out of the last 4 I have been hit. Last night nothing. Hopefully they are leaving me for another year. I have been using ergotamine and it seems to help but is useless if an attack starts. This is the first time to this site and at last I feel understood. It is very difficult telling your friends you suffer from stong headaches and expecting them to understand. Thanks. Scott
Scott <>
Melbourne, VIC Australia
Monday, September 29, 2003 at 00:02:32 (EST)

I have been a sufferer for almost ten years now, and while it has been two years since my last attack, I constantly live in fear of the day my headaches will return.
Mara <>
Mansfield, OH USA
Sunday, September 28, 2003 at 22:53:26 (EST)

Holy Cow. I never felt such pain as I did this past Thursday. I had to pull my car to the side of the road for what seemed like forever. The next thing I knew I was awakend by another car in the rest area. 2 hours had passed by. It was by far the worst pain I have ever felt in my life. My doctor recommended looking up ch on the web. What a great place to hear others stories and what they try to do to stop the insanity of the pain. Hopefully this bout will end soon as I don't know how to deal with them when they are so darn intense. hopefully the Verapamil will do the trick. The doc also prescribed takin 2 Alieve 2 times a day as well. So far, only had a short 20 minute episode yesterday. Hopefully the temporary end is in sight. Thanks for listening. Mike
Mike Hotaling <>
Cicero, NY USA
Saturday, September 27, 2003 at 11:42:21 (EST)

I am a long time sufferer of CH. I find the social isolation as bad as the pain itself. Its been 7 weeks this time with an average of 2 to 3 a day. Hopefully I don't have much longer to go with this round of CH's. If possible,try to keep your pain hidden from your family. I hate the look on their face when they see me in the middle of a CH. I wish you all a good nights sleep.
Friday, September 26, 2003 at 14:50:48 (EST)

Great site. I'm so glad I found this site. I didn't know so many people had CH. In a way it makes me feel better that there are others out there and I'm not alone...
Burbank, CA USA
Friday, September 26, 2003 at 00:31:17 (EST)

Glad to find this site, and to know that I'm not alone in my misery. Been having cluster headaches now for somethng like 6 years; first misdiagnosed as sinus infections (a fairly common occurrance, I gather). I'm an episodic clusterhead, and my episodes seem to be related to periods of high stress in my life. Does anyone else out there find stress to be a trigger, also? My doctor has prescribed Imitrex tablets, but they seem to be less effective as time goes by. Next question: does anyone else find that they have developed a "tolerance" to their medication?
Charlie Sharp <>
Lansing, MI USA
Wednesday, September 24, 2003 at 22:00:29 (EST)

I'm a 24 yr old female and have just been diagnosed with Cluster Headaches. I have had my first round with them for hte past three weeks. EXRUCTIATING PAIN is the only way to describe it. I went to see the neurologist and he prescribed me prednisone and verapamile for the next few days. It's given me relief - but I'm nervous when i get off these meds - that the headaches will continue. I feel them there just under the surface almost. My heart truly goes out to the other people here who have been plagued with these for years. At least I know there's somewhere I can talk to people who will understand. My friends and family both think it's me being a drama queen - but I can't expect them to understand the excrutiating pain when they don't know what a cluster headache feels like. Thanks for listening - take care.
Amanda <>
Queens, NY USA
Wednesday, September 24, 2003 at 12:28:37 (EST)

I just came from the Diagnostician. I started having Migraines in 1977. Have visited Neurologist, Internalist, Endocronologist, Gynocologists, Chiropractor, M.D., Allergists, Diagnostician, etc. I've had MRI's, nothing found. I've taken pain killers, no help. Diagnostician finally said they were Menstrual Migraines as they occurred a week before or during that time. Am in menopause & am having them more often, going on three weeks now. In 1977 the Internalist said it was nerves, stress, tension & anxiety triggered off by allergies. Years later the neurologist said to eat more fiber. The only relief I have had is with Imitrex (25 mg sumatriptan succinate) tablets. Thank God for Imitrex! I was told today they have Inderall as a daily preventative but it has side effects. I forgot to ask what kind and found this site when researching to find out. I'll continue to take the Imitrex as that works great for me when they occur. Some of the time Tei Fu or White Flowers oil (rubbed on the temples) helps slight migraines. It can be found at the health food store. Imitrex relieves mine most of the time. (Sometimes with a very slight migraine a shower, letting the water beat on your head gives some relief.)I don't like the fact that they always want to cover up the pain and don't care to find what's really creating it! I do have thyroid problems. Had rheumatic fever at 9, had pituitary problems. There's got to be a link somewhere. Something's got to be wrong for there to be so much pain! Good luck everyone! I hope some of my remedies might be of help to you!
Pat <None>
Arlington, TX USA
Tuesday, September 23, 2003 at 14:31:30 (EST)

Hello Everyone, Cluster Headaches what a poor choice of a name...there is no ache about it, Its just sheer raw pain that stops you dead in your tracks. Ive had broken bones before but that doesnt compare to the pain you feel during an attack. Nine years ago I got a burning sensation just below my left eye, over time it spred to the inside of my nose, then my teeth,lips,tounge and all the ridges of bone in my head. I was diagnosed as having chronic sinusitus. For 3 years they medicated me and finally they said" gee maybe you dont have a sinus problem as your not responding to medication". Well by this time my life had come to a grinding halt as I couldnt sleep more than one and a half hours before waking in intollerable pain, I lost my job because I couldnt function due to lack of sleep and going into pain every few hours. The doctors at the clinic said I had Trigeminal Neuralgia so for the next 4 years they put me on all kinds of anti seisure medication as nothing they gave me was giving me any help, Finally I had to beg them for a referal to go to a pain clinic where I had surgery done, a trigeminal nerve block was performed. I was so happy thinking that now Im going to be pain free and can get back on with my life...well the attacks never stopped even after surgury. Going back to the pain clinic for my post op checkup and still having this pain, they advised me to go to Mayo clinic or the University of Minnesota, they felt something was wrong and I needed a second opinion. I made an appointment at the U of M but missed it because I went into pain and couldnt make it. Finally I got there and was seen by a neurosurgeon. He diagnosed me as having cluster headaches, I told him I dont have a headache I get Off the ricter scale pain. he explained that they are called cluster headaches by the way they come in clusters of attacks. He prescribed me Oxygen (Thank you, Thank you, Thank you)and Lithium. The oxygen works well and I havent screamed in Pain since starting it last week. But for 9 years I have been misdiagnosed and have been thro hell because of pain. I figured out roughly That over the last 5 years I have spent 3,650 hours Screaming, thats not including time spent in pain not screaming. But as you Know with this kind of pain there is not much time feeling it without screaming. My life is in a mess, I cant hold down a job, I cant keep apointments, I cant sleep more than a few hours but Im keeping my chin up and plugging away doing what I can when I can..its tough but there realy is no other choice. I hope someday someone will find a cure for this.
Alan Geisdorf <>
Pennock, mn USA
Monday, September 22, 2003 at 20:57:55 (EST)

Hai, i'm fm Holland and i just surfed the net 2 find some info about clusterheadache wich i'm suffering from, I have it now for 4 years but i only found out 1 month ago that it was clusterheadache, al the time i feld lonely, nobody could help me, it was away for about 4 years but it is back. I have the following tips for all you people, try 2 us ice eau de cologne this is from 4711 and it helps me for about 10 min, i use it when i'm having an attack and when i'm feeling that an attack is coming, as apainkiller i use tramadol, i is a heavy painkiller but it effects ur central nervesystem, so it is not the best. I stopped using chocolate coffee alcohol tea, because it is a trigger 4 me, and really the attacks stay away not all but it works, my pain attacks starts always in my upperjaw leftside of my head and the pain goed from the back of my jaw to the front goed up to my nose and then straight into my eye, my god it is terrible, i'm glad that i know what i have because nobody could give me an answer for this terrible pain, a pain you would not give ur worst enemy, okaay everybody, i know now that i'm not alone, i hope they will find a medicine for us God bless you all Mike
Mike Zijerveld <>
Noordwijk, Holland
Monday, September 22, 2003 at 14:31:41 (EST)

Into 2nd week of new period after remission of 10 mths. By coincidence found a new way of aborting onset attack after almost 20 years of it coming and going. this I do not understand guess there is a clinical of scientific explanation behind it but nonetheless would like to share with fellow sufferers. Anger seem to abort just onsetting pain like magic! I got so mad with having the attacks ruining my life my family life and my plans that i was really very very angry down inside and almost into histeria then i discovered the pain was gone in an instant. After that again in 2 other occasions when i got really filled with anger down inside from the onset of an attack, again i work myself to almost a frenzy (please watch the feelings of love ones around) and managed to abort the pain again. Can't explain it but is sure helped. A word of caution my loved ones knows what i was doing and understood so i don't hurt anyone's feelings when i'm getting myself worked up.
vee <>
Monday, September 22, 2003 at 11:22:14 (EST)

Hello: I have just come out of a 5 week visit with the monster thank god its over.I saw a new neuro the other day and will be one of the first in canada to try botox as a treatment option. She stated her migrain people have had good results. I will be her first CH patient we both are looking forward to trying it next summer or when they return, hopefully never.
Monday, September 22, 2003 at 01:14:36 (EST)

I am 37 years old I have serve migranie headaches, I have taken everyting that I know to take and my doctor knows to give me. He has recommed for me to take the Biotox injections. And I would just like to gets someones opinion on if they have helped them. My job is giving me a hard time because I have I am having to take medicane that knock me out to get ride of the head out. I would love to get mu old life back.
Teresa O'Neal <do1to1>
Lakeland, FL USA
Sunday, September 21, 2003 at 19:39:06 (EST)

Hello, In writing a scription about clusterheadache. What can a nurse or a paramedic do while you have a headache. Are there jobs for a nurse to do then?
Dave <>
Sunday, September 21, 2003 at 07:26:38 (EST)

Adult Male with 30 years of Cluster Headaches. My Dad had them, my oldest brother has them too. The rest of my brothers and sister do not. One brother told me that he has never had a headache in his life until a month ago. He complained to me how horrible it was.
Kippington E, Burbank <>
Fort Lauderdale, FL USA
Saturday, September 20, 2003 at 17:23:03 (EST)

very interesting information.I just found out that I have a aneruysm.I wonder if that is why I get Migraines.Great web page
Thora Ray <>
innisfail, Alberta canada
Saturday, September 20, 2003 at 16:10:58 (EST)

have just found this wondeful site and I can't tell you how much it means to read about other people's pain with CH and to know that I haven't been "imagining" this severe pain. Can I also say, sometimes other people who have never suffered pain don't understand what the other person is going through, if they haven't suffered it themselves.
Amanda <>
Saturday, September 20, 2003 at 11:29:34 (EST)

15 years+ of cluster headaches. Don't know what to do to stop them. Any advice is appreciated.
Jeff Wenger <>
Mount Joy, Pa USA
Friday, September 19, 2003 at 20:43:43 (EST) pleased to find this site,been a cluster victim for many years,and always thought it was just me,so to find out just how many there are was a comfort in a sad way.Just has a 2yr free zone,now it shows it's ugly head ,I can't talk to people who have never had one ,where do you start?.thank you to all of you ,reading your mail has shown me i'm not alone after all.One day yeah ,one day we may be free,I live in hope.
Debbie <>
northants, UK
Friday, September 19, 2003 at 16:44:37 (EST)

my name is gwen for 4 months i thought i was suffering with cluster headaches but through the ouch website i was given good advice. i suffer hemicrania continua which is very similar to ch. but thankfully a drug called indomethacin is very efective for totally pain relieve. i am also seeing a cranial osteopath so far i have had my 5th treatment i am now down to 1 tablet a day instead of please anybody that is not sure what they are suffering with please rule out hemicrania first. if they dont work in the first week then you know you are suffering cluster headaches.please feel free to contact me by email. also i will leave a phone number for you to contact valerie hobbs.01646 651979. also i just wanted to say cluster headaches and hemicrania are very similar. good luck.
gwen <>
carms, uk
Friday, September 19, 2003 at 14:12:42 (EST)

Hi my name is Olive and i am a CH suffer for 42 years. my CH started at age ten i am now fifty two I get my CH every three yearsand they last up to eleven months on bouth sides one side at a time My CH as been catogorised as Mega Cluster i get emune to all medication every three days so this makes it very dificult for my doctor to treat me On july 8th my CH reapear I got so sick from all this medication that only works temporary i started seeking alternative medications i belive that God has answered my prayers I am now able to sleep at nights pain free minimal pain during the day that my oxygen helps me to aleveiate.Iwill be happy to sharethis natural product that i have found,my e-mail adress is Thank you for allowing me to share my story
Olive <>
Miami, Fl USA
Thursday, September 18, 2003 at 21:26:12 (EST)

Hello, I've been suffering with Clusters for over six years now. Like many, I've been to many Doctors and paid medical bills to some I don't even remember shaking hands with. I personally do not know anybody who suffers with clusters and would very much like to talk with someone who understands. Thanks, Maddi
Maddi <>
Barnwell, SC USA
Thursday, September 18, 2003 at 00:00:53 (EST)

As a cluster headache sufferer, I looked everywhere trying to find some relief. I am very glad that I was fortunate enough to find something with which to fight back. The following is my attempt to explain what a neurologist taught me many years ago: Dr. Wright’s Circulatory Technique This technique significantly helped to shorten my cluster headache attacks: It involves concentrating on trying to redirect a little more circulation to the arms, hands, or legs. It can described as a kind of internal “flexing” or “push.” Increased circulation will result in a reddening and warming of the hands. Try to think of it as “filling” your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. If you do, it never will. Every now and then it can work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use this method. The doctor, while holding his arm at his side, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully the same day. I have had about a 75% success rate shortening these attacks. My 20-minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance dealing with this horror, I always gave it a try as I had nothing to lose but pain. I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly kills the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes real concentration. Perhaps it will help if you think of it as an expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood down my neck while looking at my shoulder and trying to feel my circulation. Use your own imagination. There is one man who wrote that stood barefoot on a concrete floor to relieve his headache after a short time. Perhaps the body tries to keep the feet warm by increased circulation. This may be the idea behind the exercise theory. Oxygen is needed to work the muscles and there is just so much blood to go around. Maybe this draws just enough to other areas to slightly ease the pressure in the head. Cold water, exercise, or anything requiring more circulation, seems to be worth a try. This can take a lot out of you and I would have to regroup a bit. So long as you do not entirely slack off, this has a chance of working. Do your best. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck
Charlie Strand <>
Jamestown, NY USA
Wednesday, September 17, 2003 at 20:05:54 (EST)

well im back!!!summer over i had a great it is all you custer heads.there is a light at the end of the tunnel.and i am living proof.ten years of the worst f. n. pain and i lived though it and you all know what i am talking about.some times better dead then alive.just to let you all know you can make it to. maybe i mit not be saying this when thay come back but so far i have made it.just giveing hope we all need it. eggie
john stockwell <>
west townsend, ma USA
Wednesday, September 17, 2003 at 19:38:39 (EST)

Hi, I have been here before and would like to update my status as well as ask a question. Please feel free to respond anytime! On April 15, 2003 I reached 59 years. I had thought Cluster Headaches were way behind me. Well not so. In Feb. 2003 they started and thankfully, not bad enough to rid myself of them, forever! They persisted thru April 7, 2003. I had Rotarary Cuff surgery on April 9, 2003 and hav been blessed by not having any more since then. I understand they start at an earlier age and presist longer than they used to be reported. The top end age seems to be moving up. My question is, if they persist on the top end, and it is low, is there a reason. IE: Do the people opt not to have CH anymore? Do they quit and the victims have peace, without death? I had forgotten the "fear of the next time", until they started again. The fear of how soon, how long, how bad is almost as bad as the CH itself. I am so happy for this form, it has helped me to know that I am not alone and a strange person. I know for sure I will not get very old if the "threat" comes back. I will opt to not have headaches. A long time ago I went to Baptist Hospital in Nashville, Tn and told them the only reason I was there was because I was afraid the noise of the gun going off would hurt too much. They took me right into the room and gave me Morphine and told me to puish the button if I need more help. It is the only time I have an out of body experience. After the second shot a part of me floated up and looked down at the red throbbing pain. As it eased I floated down and joined my body. I had to be in the Dr's office early the next AM and that hangover was bad! Don't want to do that again. Read the lines from a wife of a CH husband and she was taking him to the hospital while he was beating himself up and telling her she was not going fast enough and all of a sudden, he says, O.K. take me home! Been there and done that, when it lifts it is a wonderful miracle, just slips up and away and over. Yes now the fear comes in, when will the next on be, etc. Thanks for everything, feel free to contact me.
Gary Sedahl <>
Lehigh Acres, Fl USA
Wednesday, September 17, 2003 at 08:45:16 (EST)

Thelast time I even heard of cluster headaches was on a health channel. I watched in amazement as the people seemed to put my story on the television. At the end, they had concluded that the cluster sufferers had a malformed part in their brain. Since that, no one else has mentioned it
Lynn Chabot <>
Fort Nelson, o Canada
Monday, September 15, 2003 at 19:30:48 (EST)

I am a chronic cluster suffering American living in Holland, working for the US Army as a civilian employee. I would like to be in touch with other sufferers in the Maastricht area or near the Dutch borders with Belgium, Germany and Luxembourg. I would also appreciate it if anyone knows how I can get in touch with Greg Skrorohod, a distant cousin and fellow sufferer-he lives in Lincoln, Nebraska.
John A. Sckorohod <>
Maastricht, Holland
Sunday, September 14, 2003 at 12:01:29 (EST)

I am a 26 year old who has had headaches for 11 years, and I am thrilled to find this site! My HA's occur episodically, lasting 4-6 weeks, and usually come once a year. Within a given cycle, I experience classic CH with the teary/swollen eye and nasal drip, as well as migraines, fully equipped with vomiting. My headaches are hard to classify and thus hard to treat; I'm trying Topamax this time. I am so glad to have the shared experience I read about on this site; it truly makes me feel better to know that someone else really does understand how much it hurts!
Sarah John <>
Takoma Park, MD USA
Saturday, September 13, 2003 at 16:06:42 (EST)

Maybe I can offer a glimmer of hope to some of you. I have suffered for 32 years but only recently found that they seem to stem from my digestive system. They occur mainly when the seasons change and last 5-7 weeks. I have noticed much more flatulence during this time and there is nearly no food stuff which I can eat which doesn't cause a build up of gas. Alcohol is of course is out. Perhaps automatically once I started to massage my bowels and noticed a muscular spasm in the transverse colon which I concentrated my massage on and low and behold the pain eased and actually passed. I have been using this technique for several years now with positive results. Of course it's not something you can do in the open, but mostly I find a quiet place and within 30 minutes can rid myself of the attack. At home I have massage oil which helps relieve some of the soreness of rubbing and seems to stimulate the blood flow. I also discovered vigorous sporting activity helped - maybe that has something to do with oxygen intake. As with other therapies, it might not work for everybody but it might just work for you. I've been there and I know what it's like. Good luck
Terry Menard <>
Zurich, Switzerland
Friday, September 12, 2003 at 10:19:40 (EST)

Hi! I am a sufferer. I am a 49yr old male. I suffer from other ailments as well but nothing as frightening as these headaches. They are diagnosed by my local doctor and hospital as cluster headaches. These headaches start: numbing of left side of face, mainly lips. Burning of the left eye which gets very sore and weepy, also left side of face becomes numb/tingly. I start to dribble. The pain becomes unbearable.My breathing gets very erratic and i start to stress. I moan and often cry.{ i first thought i was having a stroke, but i have had 4 of them, so i now know the difference.} I get up to 15 of these a day and can last for 4 to 6 days, then the climax arrives. This drops me to the floor and i cry in fear and pain.
clive welson <>
thames, new zealand
Thursday, September 11, 2003 at 05:41:21 (EST)

I have been suffering with CH since 1977. I would get a couple of bouts a year until 5 years ago, I had become chronic! I could not understand why my cycle was not ending as in the past to give me a break. I now find out I am chronic, and should not get my hopes up for a break. Instant panic, every night a CH when I hit my dream period(1 hour after falling asleep), I can't live my life like this!! Well 5 years later I am still around, getting one or two ass kickers a day and getting my ass handed to me every night! I am suprised at some of the comments about the help they are getting. It is very important you find a Dr. who is willing to go the extra mile with you. I see my Dr. every two weeks faithfully(my insurance company goes nuts, but I leave that hassle up to my Dr.,I have enough problems! I do not respond to any of the calcium blocker,pure oxygen,lithium or any of the other treatments I have been reading about. I am surprissed to hear of anyone using any type of pain killers, they seldom work, Predisone, my Dr. says No Way, way to hard on body especially when you are chronic and neen something for the long haul. I use Imitrex injections, but only 2 a day at most. They constrict all the blood vessals in your body, that is why you feel a tightness in your chest. In clinical trials people died who were just having 3 injections a week. I work very close with my Dr. to monitor this situation (EKG, Stress Tests etc.) I also useStadol every 2 hrs trying to avoid a bad situation. This is mildy effective but it is am Opiat and am addicted to it, so what it helps. Don't waste your time with those damn Imitrx tablets, they are too slow you must use the Injectors. I have one set up on my nightstand ready every night and one close by me all day. Remember 2 is the limit. Everyone seems to have a differant idea how to combat the bastards which is fine just remember to find a Dr. who is not afraid and willing to do what it takes. I feel the issue about Mental Health need to be addressed. it is hard to live a normal life when you suffer from this condition. Forget the anti-depressants, they don't work, I know I've tried them all,a waste of time and money. My Dr. gives me 1mg. xanax for at night or when ever I feel the need for one. Now for the depression, I take 2 15mg. dexedrene 4 times a day. It worked wonders for my attitude towards life! I know it sounds like you are a junky, but you have to take drastic measures for a condition like ours. What the hell, for all we have to put up with in a normal day we should be allowed to take a little speed, and then some Xanax at night to calm down and try and get some rest, so you can face the battle the next day! I need to take Viagra to get an erection because any meds you take(I can only speak for the Men) constrict your blood vessals and you will only have a limp noodle with restricted blood flow to penis. I could go on and on about all the meds and treatments I have tried over the last 27 yrs. If you are interested you can e-mail me, I have tried most everything because nothing has worked. You cannot stop the bastards but you can learn to live with them and I have done just that! I use Xanax for my anxiety, dexedrene for my a d d and just for the well feeling you can get(2 15mg. capsules 4 times a day is alot so start out light, 10 mg. 4 times a day, then 2 10 mgs. 4 times a day till you find something you and your Dr. are comfortable with and men don't forget the Viagra, it works and it does wonders for you and your partner in between Ch. Remember you must learn to live with these CH's even if you turn into a druggy!! You must also take care somewhat of your body. Try working out heavy, it will make you feel much better for sure. Get off the damn couch and hit the weights, you will feel better mentally and physically.. The dexedrene was a Godsend for me, I thought my Dr. had lost it when she said I should try it, Me taking prescription speed, I loved it and have been taking it for over 3 years, yes we get addicted, but when you are chronic you do not have a choice if you want to lead a half-assed normal life. Its better than livivng in the bedroom with the door shut! Feel free to contact me via e-mail if you have questions, I cannot solve the bastards, but I have worked hard on the mental approach to this problem! This is why I am doing this at1:28 A.M. when I have to be to work at 6:00. I used my Imitrx injector, tuke my 1 mg. xanax and am getting ready to crash till the alarm rings. Who can lead a mentally healthy life when they know they are going to get their ass kicked EVERYnight 1 hour after they fall asleep. it wears you out physically and mentally, but you and your Dr. can do something about it, don't just bang your head against the wall like I use to, get aggressive withe meds, if your chronic, its the only way out, I know, My hear goes out to all of you... Stay Well
Charlie Meyer <>
Faribault, Mn. USA
Thursday, September 11, 2003 at 02:17:22 (EST)

I was a victim but ok.Thank you very much for this site.It is quite interesting indeed.
onyeoru onyeze <>
Roslyn, PA USA
Wednesday, September 10, 2003 at 05:58:31 (EST)

iwas a chronic cluster sufferer for 7yrs took many different medications had 2 operations which involved injecting an alcohol based substance to the nerve i got some relieve but not for long the attack became more regular and more severe towards the end i took everything i could but the pain overcame the medication so it was decided to carry out trigeminal nerve removal which when done makes one side of the head completely numb i do still get chronic cluster headache sthe difference now is i cant feel them this treatment isnt done for everyone and although ive been pain free for 3 yrs now if anyone wants to email me please feel free but im not qualified to give medical information but i do feel for anyone who suffers with this condition and i hope they find a speedy result to this medical condition thanks for reading this and maybe taking time to reply
andrew keene <>
essex, uk
Wednesday, September 10, 2003 at 01:04:22 (EST)

I have been able to prevent (most probably cure) my Cluster headaches,through herbal medicine, Want to help everyone who are interested to try
Pankaj Mehra <>
Tokyo, Japan
Monday, September 08, 2003 at 08:33:43 (EST)

I though I was the only one...this would not sound right but Im glad Im not the only one..Im in the Army so you just imagine how hard is to deal with this while at the same time hide the problem so I won be denied to serve
Luis <Colon>
Fort Bragg, nc USA
Saturday, September 06, 2003 at 14:59:20 (EST)

Had pretty much given up on the internet, doctors, meds and and sometimes my life from the frustration of living with this devil called cluster headaches. Am a 45 wm who has been suffering since 1998. This condition/disaese has impacted every aspect of my life. As i write this it has been about 12 hours since my last major attack. I have major and minor attacks. Minor will disapaite quickly , less than 5 min, major is at least 2 hours of pure torture. Have tried all the drugs, imitrex nasal worked the best for about 6 months. prescrip meds no longer work. I have found the following to provide some relief and maybe even shorten the attack. immediately drink 2 glasses of chilled water, take 200 mg advil and 2 sudaphen no drowseys, and 2 81mg asprin regim, aply cold compress to right eye, forehead and back of neck. use compress on and off for 5 minute intervals, and a strong cup of black coffe. this seems to be the time of year when my attacks reach an accute stage. Have found stress, lack of sleep, high humidity, warm rooms, processed foods, ALCOHOL, MSG, CHOCLATE, to much coffee, are all triggers. (cold air works great for some relief), stick my head in the frezzer. Crying only seems to prolong the attack. usually roll on the floor, pace, curse, wish for a quick death, knowing it will eventually go just as it came. CH have cost me a marriage, children, financial chaos, friends, jobs and anything else i ever thought was of value in my life. No one except those who suffer could probably relate to this. Most doctors are clueless and have for better or worse become my own. The episodes dewcriped on the home page hit the nail on the head, no pun intended. I have tried to describe the pain, as an ice pick being shoved in my right ear until it pierces my right eye, while blowing out my sinuses and making me completley inhuman. thanks for reading, randy
Randy Lewis <>
Huntingdon Valley, Pa USA
Saturday, September 06, 2003 at 03:52:35 (EST)

My neurologist recently had me try topamax and I am finding that it is effective. I do get break through pain, but take a fiorinol for that and I don't have to use the Imitrex injection. If you could have your doctor prescribe this drug it may help you too. It's worth the try. It has helped me and I've been a CH suffer for 35 years now. Take care and good luck!
Linda <>
Dunnville, Ont. Canada
Friday, September 05, 2003 at 22:06:14 (EST)

I have been a sufferer for over 3 years now. My girlfriend tolerates all my attacks and she is very supportive. The longest I have ever been without a cluster heacache was probobly only for a week. I went to see doctor in Santa Monica, CA, and he told me that one reason there is no cure for these headaches is beacause pharmaceutical companies dont want to invest in something that only effects a small group. I was very dissapointed and lost hope. I am in the process of performing a self study. I have noticed some sort of pattern. I will keep you informed when I feel confident that my idea is true.
Alfie <>
Torrance, CA USA
Friday, September 05, 2003 at 14:58:29 (EST)

Having found this site has brought tears to my eyes. Indeed, your language is the same as mine and up until now, I thought I was the only one that could speak it. I'm now 52 years old now (male), and I've had CH since I was 22. The first ten years were chronic (any time, any day, any place and sometimes 3 a day). I'd get carted off in an ambulance, and once in hospital, get treated for an epileptic fit. Once the attack over, rather than admit they were mystified, doctors would suggest I needed psychiatric treatment. Things have changed since - in their approach at least! The strange thing is that no pain killer would work, not even morphine! Let's not discuss the side effects; All those lonely years, sleepless nights, trying not to panic, trying to contain and accept the pain, counting the time, because it was always a question of time. All that energy lost, because every attack would sap a tremendous amount of energy that was needed to master the Beast. Needless to say, my motivation to work the next day was diminished and so were my desires to progress professionally. Then I met my wife, who very quickly became the only person to bring help, in that she would be there to sooth, calm the panic sensations, incite me to start some kind of rythmitic movement of the body so that some of my attention was taken away from Beast. Minus the pain, I think my wife has suffered as much as I, especially in terms of being witness to such pain and the frustrations of being totally helpless. My children were once witnesses to a very serious (unhideable) attack and it has left them with scars we try to avoid talking about. Anyway, I was alone once on a training course in the UK when the Beast came to say hello. I was no longer a chronic CH sufferer, but nevertheless a twice-a-year 4-weeker! It was 01am and I was staying in a country hotel, far from professional help. The Beast decided to visit stick around for longer than usual, which forced me to call the house doctor, around 4am. He finally arrived at about 5am and by that time, I was about to open the window for the big leap. He said he'd try something that had just come out on the market, called IMIGRAN, the main ingredient being Sumatriptan, made by Glaxo UK. The Beast left within minutes and before going to sleep, I must have cried non-stop for 30 minutes, out of pure joy and relief! I waited 6 months before the drug was available in Switzerland, about 7 years ago, and I never leave home without it. I have now had several remissions of over 1 year, even almost 2, and although I know the Beast will always try to befriend me, I have ALWAYS managed to chase him away within 6 minutes - I have never agreed to try any other method of taking Imigran than by auto-injection; it's the fastest. Be careful though, DON'T take without advice from a doctor, because it is not for the weak-hearted. If anyone wants more info, just email me. Remember, I speak your language. Last night was a bummer, but the Beast didn't stay long and got the message; don't come back for a while! Hang in there, because life is so good in between visits.
Edgar King <>
Geneva, Switzerland
Friday, September 05, 2003 at 04:33:56 (EST)

There can be no comfort when I suffer these attacks, I felt completely alone until I was diagnosed, and found this site. I feel for each and every one here, and can only hope that the medical field will make some greater efforts to help us!
Mark <>
Chgo, Il USA
Wednesday, September 03, 2003 at 18:55:02 (EST)

My wife suffers from cluster headacks for about 25 years. A few years ago she was referred to a pain clinic. She was given a procudre called a sphenopalatine ganglion injection where they put a needle into the side of your head and burn out the nerves. she has had remarkable success, she has the procedure about every 18 months. And has not had a headack. when she starts to feel them comming she has the procedure. She never got any releif form any other doctor or from any of the medications. This is truly a miracle
frances pisanko <>
rancho santa margarita, ca USA
Wednesday, September 03, 2003 at 18:46:29 (EST)

I am 36 years old and have been suffering CH's since around 18 years old. I am frustrated with Doctors that have no idea what we all go through! Allot of the medications I have tried seem to work for one to two weeks and then!!! Watch out!! When they come back they come back hard! For this cluster I am taking Ritalin and it seems to be holding off for now. Does anyone know any Doctors in the Upstate New York area that understand what kind of effects these headaches have on us and on our families? Exhausted from no sleep, Stressed waiting for the next one to hit and even when your in no pain having to pop prescriptions to prevent them and hoping that it will work. Then when it does stop working heading back to the Doctor and starting all over. There are so many thing to talk about with these headaches that I find it hard to talk about them. Thanks for giving me a place to ramble!!
Scott <>
ny USA
Saturday, August 30, 2003 at 20:01:05 (EST)

Interesting website for us who,... suffer this curse. I have had CH's for,... going on 18 years now. I'm 39,... I keep hoping I'll out grow them someday,... but am certainly not holding my breath..! Mine seem to "cycle" thru every couple years. Tis the season again now.... I take Trazedone at nite,...year round. Seems to keep the cycle down to every couple years atleast. The only time it didn't,... was at the suggestion of my husband at the time (it's not good for you to be taking drugs all the time,... you should quit taking those)... within a couple weeks,.. the headbangers ball was back in full force!! Won't do That again! When I am in the CH cycle,... I also take veralin every morning,... and fiorecet w/codein for the pain. And Hot towels. It works... sorta,... but not near fast enuf. Well that's my story,... in a nut shell. Just wanted to say I appreciate the website,... and the variety of support and information you provide. Thanks for letting me throw my 2 cents worth in... Best of Luck to you all...! KB
Kate <>
Saturday, August 30, 2003 at 00:23:20 (EST)

I was just diagnosed a few days ago with what my doc THINKS could be cluster headaches, but after reading through this site, I'm 99% sure that's what it is. He's put me on 80mg of Verapamil and it seems to have worked a bit. This happened to me almost 2 years ago but the pain wasn't near as intense as it is this time. Just knowing that I'm not the only one with these weird awful headaches makes me feel better. Also, being assured that my brains aren't going to blow out the side of my head is a huge releif. Thanks for being out there. Janine
Janine <>
AB Canada
Friday, August 29, 2003 at 10:58:56 (EST)

thank you for beeing there!
anna-maria larsson <>
parikia, paros greece
Thursday, August 28, 2003 at 15:07:22 (EST)

I'm 24, suffering since 2000. Each CH episode usualy in the end of April but latley more often. I wish I could show this site to the manager who fired me the other day! I have studied cluster headaches for some time and have tried many treatments, some with pleasing results, some just wasting money. Verapamil 120mg/ day seems to cut the frequency but the pain is still intense. Icepacks on the temple of orgin and neck seem to do wonders at times. One doctor gave me a rx for vicodon because my episode seem to last three weeks in the past. Being doped up all day long isn't my idea of a good life but it's a better than the cluster headache. I'm going to the doc tomorrow and am going to get auto-injectors and see how they work I would like to chat with anyone about my information on how to limit these "devils" from attacking. I would also like to absorb any information anyone has considering this looks to be a life-long deal. It's good to see a place where we all can feel normal and meet people with the same "devil" curse! I'll post results of treatment down the line.
Jason Mahle <>
Rochester, MN USA
Thursday, August 28, 2003 at 05:50:58 (EST)

This site is great. I've been in denial that CH is my problem. I just had my wisdom teeth out thinking that is what they are from. They needed to come out anyway so it wont be a waste. At least now I know where to go if that doesnt work. TY
Bruce Diehl Jr <>
Roslyn, PA USA
Wednesday, August 27, 2003 at 23:34:08 (EST)

Oh my after years of searching for help or at least someone who knows how I feel. Suffered for over 10 years and went the last year without a single attack. Of course now they are back. A doc here gave me prednisone to help but since it makes me gain weight I can't take it because of the ARMY if I am overweight I am punished and posiblly kicked out 3 years short of retirement. Tried all the meds I take imitrex orally and lucky for me the ARMY pays for it. Take Fiorinal for pain. Mostly I take what I call a cluster cocktail. 2-4 Extra strenght tylenol, maybe 800mg of motrin, 100mg of initrex at onset and finally 1 fiorinal evry 15 minutes until I feel it subside. Max of 3 fiorinal however. I have learned alot from you folks thanks for making me feel not alone anymore.
marc <>
madison, al USA
Wednesday, August 27, 2003 at 10:46:33 (EST)

Many thanks for the information, what a great web site! Best wishes to you all from a limey!
Duncan Robertson <>
Hull , England
Wednesday, August 27, 2003 at 06:52:58 (EST)

hi, i am happy to see this site. i thought i am alone suffering..but i am seeing a lot..i have this cluster head ache for about 15 years. every year i will get this pain..oh god not able to express how painful it is. but what to do...we have to live with there any proper cure for this available...;)
prem <>
houston, tx USA
Tuesday, August 26, 2003 at 18:54:16 (EST)

Thank you! very relieved to see i am not alone. Have been diagnosed with ch and my symtoms seem very similar to other people's but I also feel extremely sick - can this also be a symptom of ch? have now had this for five weeks constantly,it gets better and worse but never goes away completely, is this ch? does anyone else feel very nauseous with it?
aviva <>
london, uk
Tuesday, August 26, 2003 at 18:26:55 (EST)

Does air travel affect Cluster headaches. I would like to go with my husband on a business trip, but don't know what will happen. I am only new to clsuster headaches for the last 6 weeks ? Any advice would be appreciated. Thanks
Sandy South <>
Adelaide, S.A. Australia
Tuesday, August 26, 2003 at 18:15:44 (EST)

Just found this site. I had no idea so many others shared this demon! Got my first bad one in 1976. I quit smoking cigarwttws about 6 years ago and the headaches stopped about 3 months later. I thought they were history until last week. Now ther are back and I am glad I found this site.
Dan <>
Reading, PA USA
Monday, August 25, 2003 at 23:19:40 (EST)

Dear all, I am a 50 year old woman. I have just been diagnosed with cluster headaches after seeing a Nueroligist. i have been suffering for 6 weeks and the pain was unbearable.I have never had headache problems in my life before but all of a sudden have got these Cluster headaches and dont know why. I am on sandomigran as a preventative 4 at night, but doesnt always seem to work. i am only getting them at night ( 3 or 4 ) and oxygen relieves the pain in about 15 to 20 minutes. Last night was a bad night with the pain a bit more severe.I am extremely tired, my husband has been very understanding. I seem to now be having a reasonably good night followed by a bad night. i wish I knew how long these are going to go on for. i have stopped drinking alcohol. thank god for oxygen. i am not sure what category of CH's I am getting as this is my first experience with them, prior to being diagnosed i was up crying in pain all night until my husband called an ambulance. I would appreciate any help. Is it better to take all 4 tablets at once or space them out.
Sandy South <>
Adelaide, SA Australia
Monday, August 25, 2003 at 21:52:29 (EST)

I am so thankful for this website. To know that I am not alone helps so much for the depression I get during "cluster periods". I am 34 and have been getting CH since I was 19. The episodes started out a year apart, then 2yrs, 4yrs, and they recently came back after a 6yr break. I was horrified when they came back. The only medication that has ever worked for me is Imitrex, although my doctor prescribed Relpax this time, which is the newest "triptan" drug approved by the FDA. It seems to work as well as Imitrex, and my stomach handles it better. The problem're supposed to wait 24-48hrs before taking another dose and I am averaging 2 headaches a day. My fear of unbelievable pain outweighs any fear of overdose for me.
Living Scared <>
Ferndale, MI USA
Sunday, August 24, 2003 at 23:41:02 (EST)

I am so gratified to find this site. Having suffered occasional clusters for years and never being able to get treatment or diagnosis, in the last day I have finally broken the back of this thing. By a matter of luck I stumbled across Imitrex 2 days ago and got a prescription this morning, now I have found it, plus oxygen and water treatments on this site. I feel like a new man! Thank you!!!
John Egermeier <>
San Jose, Ca USA
Friday, August 22, 2003 at 18:31:19 (EST)

Hi,My name is Karen, Ive been with headaches since the age 14,now 34. I'm so glad to have found this site.I'm plegued with pain everyday, attacks that last 3-4 hours at a time. It then settles into a shadow gripped around head waiting to strike at no given time. zero to five minutes it take to go full blown into a #10 zone. desparately rummaging thru all the pill bottles to find the right one to take.Oops! Out of time, its too late. I'm down for the count! I'm here and I'm a SURVIVER just like the rest of you. I'll will cry, and pour out my pain and hold onto the next person in line with the same pain. support and be there ...X & O's and bandaids... thanks agian for having people unite in a place ment for them.. ! ttys,karen
Hartford, Ct. USA
Thursday, August 21, 2003 at 14:08:10 (EST)

I feel like there is no hope for me. My migraines are so bad I want to kill myself. I love my life, but I hate my pain. I wish it would stop.
Terra Kutter <>
Fort Smith, Ar USA
Thursday, August 21, 2003 at 10:30:10 (EST)

hello. my name is david and i am looking for individuals to correspond with via email about cluster headaches. i would like to offer support to others and perhaps someone out there can help me as well. thanks.
david <>
n.c. USA
Thursday, August 21, 2003 at 07:01:06 (EST)

Hey there I'm prety fuck with that C...,but thanks to this web side we R not alone. Patrick
Patrick <>
Tokyo, Japan
Wednesday, August 20, 2003 at 01:11:11 (EST)

Hello all! I'm going on week 6, and was just diagnosed. My MD told me I had tension headaches and I told my MD she was on crack....there's no way in hell this pain is from tension! I'm so glad I found this website! I've found it very informative and reassuring that I'm not alone in suffering(experiencing???)from this. I'm trying lots of combos of meds right now, not finding them effective..Yet. Losing steam and patience at a rapid rate. My family is ready to ship me off probably one-way.:) It's just so dang frustrating! Just glad you're out there. Thanks!
Erin <>
Woodstock, CT USA
Monday, August 18, 2003 at 09:18:21 (EST)

Hi to all fellow CH sufferers. I wanted to share my experiences with you. I too suffer from CH's. It started when I was 19, I am 34 now, and I had no idea what this excrutiating pain was. I thought I wanted to die. I would threaten to jump off a building ect. They only came during the summer, very rarely in the winter. I lived with them, and no one could could figure it out, where they came from, ect. But I know now I had all the classic symptoms of CH's. Any types of smells, clothing, cleaning solutions, would rip my head apart. I looked for all fragrance free products which are very hard to find! The pain was so bad, I thought that breathing was causing the pain. Of course none of my family or friends understood. Even when they saw me lying on the floor, banging my head against the hardwood, they would just "tsk tsk" and walk away. In a way, I'm kind of glad they don't know this pain, yet it would be nice to know that they sympathized with me. I went to an ENT who told me I had sinus infections, so I took prednisone, which hepled, but the pain came back. (I know realize I was in a new cluster). The doctor operated twice on my nose, to no avail. (Although I did get a new nose out of it). I had been to nuerologits over the years, most of them just pacified me and gave me fiorinal. Finally I went to a new neurologist. I explained my symptoms to him, and he diagnosed me right away with having clusters. He prescribed lithium and verapamil for preventative and Imitrex to take as needed. It worked!! I went actually pain free for a year. All the sudden this summer (I don't know if it is a coincidence or not), when my air conditioner broke, my clusters came back. I never did well in the heat and humidity, but this was murder! They came back full force and I couldn't even stay cool to help with the comfortableness. So right now I am in the middle of a cycle. Usually they last about 2 months. So my question is, Can one develop and tolerance to the medicines I just described? I would love to chat with others who have clusters. Please feel free to email free. I would love to trade "war" stories!! Thanks for listening. ------ Scott >:-)
Scott Frank <>
Philadelphia, Pa USA
Monday, August 18, 2003 at 02:16:11 (EST)

I've been suffering from migranes for years now on and off, but the last year and half they just come on a regular. I'm taking Imitrex and it does not help at all, does anyone out there know what I could do, please tell me...Help
Angel <>
Newnan, GA USA
Sunday, August 17, 2003 at 14:43:34 (EST)

help me please! I feel like pulling my eye ball out of my skull. Lately i,ve had headaches that are so painful i find myself hitting my head with great force because the pain is so intense. I went to an E.N.T. because i believed i was suffering from sinus headaches, I was given medicine and no relief! I've been keeping a record of the headaches and they come a little after midnight almost every night, then almost always at lunch time each day, then again around three p.m. sometimes the times vary a little but this is generally the schedule. i am really scared. i can do nothing but pace around when the pain comes, usually this pain is full blown in about 5 minutes after i feel the first hint behind my left eye. never anywhere else. the pain lasts about 1 hour and it hurts so bad i want to break things and fight! shoot something or someone, this behavior is uncommon for me, I am a recovering drug addict, clean for 19 months and never in my life did i even imagine a human being could experience so much pain. analgesics have no effect nothing has no effect. My veins in my forhead and especially my temple bulge out and throb. I am not sensitive to light, i tried lying in a dark quite room and that is a joke, I can't lay anywhere for long the pain is so great i find myself moving around and screaming, walking around, sitting down, standing up. At night i am almost terrified by the thought of sleeping because i know the pain will come soon. I have never had any headaches other than small ones. I have been having these for about 3 weeks and i will have to have some relief soon.
tommy walton <>
coahoma, ms USA
Sunday, August 17, 2003 at 09:19:25 (EST)

Well I see I have alot of company in Hell!When I first got a CH I was in high school,no warning,in class and all of a sudden I thought I was going to die.My CH did not go away I had these things 24 hours a day 7 days a week for about 2 years then one day they were gone.Then within a year they came back,There was no help, no one understood,I was really thought I should just end it all,I mean come on all the drugs I had tried never even put a dent in the pain the docs could not help and I could not go though this again.Well I did over and over and over again.One day I was thinking thats it, no more, I am going to do it ,I cant take this any more and like a miracle the host of show was on t.v and was explaining why he had not been on the show for a few weeks.Now I had never seen this show or this guy before but he described his problem and where he got help.The desciption was my problem, I could not believe it! I was not alone,and were did he get help? 5 miles from my home!WOW the Graham head ache center at the Faulkner hospital.I made an appointment, when I walked in I new they understood, you could tell by the lighting,the colors the way things were placed, the tone and attitude of the people there.I met my doctor and 2 hrs later had been diagnosed with CH.I took calan and after the second dose it was like someone shut off the pain, that fast! well that was around 1986 they started in 1978. finally help, but as the years have gone by the meds dont work as well, cycles are very hard to stop now.FYI if anyone out there is seeking help try the spaulding rehab hospital (head ache clinic) in Boston, MA the graham center is closed and most of the docs went there.Ever wonder why people even family members cant understand what we go through its like they think we make it up.You know how sensitive you get to even the slightest odors? well my wife lights those perfume sented candles I think she believes if I dont see it it wont bother me. Some times I just cant believe how little compassion she can have towards this condition.Even our laundry has to smell like like that sented stuff that can cripple you.While I am at it how about nail polish?Does anyone besides us get it???
Saturday, August 16, 2003 at 23:57:22 (EST)

is there anyone from Russia?
Svoloch <Svoloch>
Saturday, August 16, 2003 at 21:30:14 (EST)

Hi. I have suffered from Cluster Headaches for several years and am trying to get in contact with other people with this condition to "compare notes". I have found Cafergot, Excedrin Migraine, and Sansert to be my only options. But even these only provide a small amount of help. If you would like to someone that is also going through this experience I would appreciate hearing from you. J. Hall 770-433-9581
Jeffrey Hall <>
Atlanta, GA USA
Saturday, August 16, 2003 at 13:14:51 (EST)

Testing--have had problems adding to guest book in the past.
Carla_Comiter <>
Raytown, MO USA
Saturday, August 16, 2003 at 11:34:25 (EST)

I am the wife of a CH sufferer going on for 10+ years now, always occuring in Jan - Clockwork. Been on verapimil for 2 years now, doing much better. 3 weeks ago, they returned - the verapimil doesn't seem to be helping? Is this 'normal' for the patterns to change suddenly? The dr.s know less than us, so he is self medicating with the verapimil, I am worried, any help appreciated.
Friday, August 15, 2003 at 19:11:07 (EST)

Have been a cluster sufferer since the early 1980's. For the past few years have had several yearly series but at the very lower ends of the the kip scale. Up until Tuesday of this week had really gone almost a year with no serious headaches at all. Then they returned again and it only took a few minutes to remember the pain, the crying, and the despair of having to wait for the pain to end. Trips to the ER have never helped as most on duty have no idea what you are talking about - and sometimes by the time they get to you that particular pain session has ended. Last night was a constant 5 hour session before it ended. In the past a regiment of Predisone has been of great help to me and has changed the cycle timing and helped eliminate the headaches quickly. At 20mg = 2 pills 3 times per day for 2 days; 1.5 pills 3 times a day for 2 days; 1 pill 3 times a day for 2 days; 1.5 pills 1 times a day for 4 days; 1 pill 1 times a day for 4 days; .5 pills 1 times a day for 4 days. Important to finish off the whole schedule and I have been told not to take cafergot while on the pills. Mood changes, more eating and bathroom time also seem to occur but it has worked for me. Good luck to all suffer, if you haven't had clusters you can never understand.
Peter Allvin <>
Waterbury, CT USA
Thursday, August 14, 2003 at 14:56:36 (EST)

Yep just a short note to say my email address I put into my comments was wrong, sorry. Spent last night in Hospital with my Beast. Was that a bad idea, 15 mins to get a cab, 10 mins to get there 10 more mins to fill in paper work, halfa to see a doc. Guess what, no more CH! So now they want to keep me their. Oh what a night!!!! Remember that when its night in Australia its not in the US, so when i'm suffering your not and visa versa. Thinking and praying for that cure for us all. H7
Hamish7 <>
Sydney, nsw Australia
Thursday, August 14, 2003 at 05:41:21 (EST)

Hi,another lady here who also suffers, some days I think my family suffers more. Tryed O2 no help. tryed alot of other drugs,sansert,and all the others. Imitrex works most of the times but can not afford it, uninsurable. If i could afford 827.00 a month I would not need insurance.My "pain" used to come from sept.- march for the last 9 years. The last few years it just comes when ever. I have taken so many steroids cause they are so cheap, but this year I am having so much trouble with them, seems i am lossing my mind which would be okay if the pain when go away. Only get about 4 hrs of sleep a night and thats a good night. Would love to here from someone else out here who has been on pred. for a long time and see if you are having the same mental trips i am having. I have been on these pills going on 2 years solid now and if they do not kill me the headaches will. not sure how to get one the live chat room yet, not even that good typing.This puter thing is new in the few months. I am 46 soon to be 47 if the good lords willing and these things ever go away.sombody please mail me thanks.sandy
Lewiston, Mt. USA
Thursday, August 14, 2003 at 01:22:59 (EST)

hi there i have been a ch sufferer for 20yrs now,(i'm 38)going through a chronic phase for the last 8 yrs with at one time a peak of 16 attacks in one day,it still hasn't killed me though (came close a few times)lol just found this site the other day and think its pretty cool for not just me but my long-suffering girlfriend who i couldn't do without coz she picks up the pieces afer a "10".just wanted to say hang in there guys an gals one day they might find what causes them an then we can all laugh an hold a party:)
zanychef <>
Wednesday, August 13, 2003 at 06:36:27 (EST)

20 months beast free until three weeks ago. 1-5 per night currently. Back on the medication trail again and looking for a doc than cares about patients not the money he pulls in per consultation. I'm in Sydney Australia if anyone knows of a GP versed in the CH suffers world - well HELP ME! Also in the wonderful world of OZ (Australia) it is illegal to self inject anything!!! So only slow relief possible. Can someone tell me what the imigran nasal spray is like? Would be great to hear from someone who shares the beast. Thanks again really.
Hamish7 <>
Sydney, nsw Australia
Wednesday, August 13, 2003 at 05:52:07 (EST)

Been a Cronic C.H suffer for 7 years. Only relief I get is with Oxygen, Prednisone, and Indocine. Would like to know the experience someone has had with Imitrex. Blood pressure problems? thanks
Norm <>
tx USA
Tuesday, August 12, 2003 at 22:49:04 (EST)

Hello,I've been suffering from ch since I was 13.I'm now 38 and have only just today been given imigram pills by my doc,thanks to being educated by this site and it has worked,thankyou God and thankyou this web site.I'm no longer afraid to go to sleep- I hope it keeps on working, but for now, I'm grateful for today!!
Tuesday, August 12, 2003 at 18:56:49 (EST)

Hi...Just jumped onto the site for a second and was totally shocked that there were other people who suffered from CH's too. I will write more about my experiences and would love to chat with other people with CH. Please feel free to email me! Thanks
Scott Frank <>
Philadelphia, Pa USA
Tuesday, August 12, 2003 at 02:18:46 (EST)

I'm 34 and have had chronic clusters for about five years. I think they came about from having been hit by a fastball about ten years ago. I didn't see a doctor for the first two years because I was fearful of whatever. You know, the whole guy thing where if you don't see someone about it then it isn't a problem. Well, after thrashing around in excruciating pain day after day after day, my wife finally made me go. Fat lot a good that's been doing me! I've been through seven doctors, catscans, bloodwork, etc. I've tried about twenty medications and they all suck. After my first doctor, I started doing research and discovered they were clusters. You think anybody listened to me? Of course not, I'm just a stupid patient, and when I argued with them, they would pass the buck. My sixth doctor actually got rude and told me he didn't know what I wanted from him. I told him, "I want the pain to go away." He left and sent his nurse back with an appointment with another doctor 200 miles away. So I went. What else could I do? And finally I got lucky. After six different diagnosis, this guy actually said "clusters". I don't know about the rest of you, but if you have chronic clusters the doctors don't believe you because you are supposed to have remissions. Well, my latest medication was steroids with more inflammatories. The steroids worked for five days and now I'm back to the norm. Oh well, it was five great days anyway. I guess I'll see what comes next, eh?
dave o. <>
morrill, ne USA
Sunday, August 10, 2003 at 23:46:44 (EST)

I have been a cluster headache sufferer for over 10 years. I appreciate all of the information from this website.
Cindy Coomer <>
Weaverville, NC USA
Sunday, August 10, 2003 at 23:22:44 (EST)

I'm a 54,W.M. my CH started at 18 with major episodes occuring every 5 years. These typically lasted 4 - 6 months and usually ended up with a period of hospitalization and putting me on disability (during the majors I average 6 - 8 level 8 - 10 CH per day). Initially my HA were right sided but 7 years ago at the end of that major they switched to left sided. I also became a chronic at that time. At that time they also diagnosed me as having a type 1 chiarri malformation. Presently, I am in another major (on top of being chronic). I haved used every medication and treatment that is listed on this site and many that aren't. I have consulted with the top people in the US and Europe regarding my CH's. I am now diagnosed as having "complex" CH's. I'll write more at a later date.
Steve Beck aka spock <>
Rochester, NY USA
Sunday, August 10, 2003 at 20:37:38 (EST)

Help, I'm having trouble registering. I want to share my pain and experiences with other Cluster Heads, but having trouble getting registered. Maybe DJ will help. Love you all.
Jane Kleist <>
Milford, MI USA
Sunday, August 10, 2003 at 19:34:53 (EST)

Thank God we found this site! My lovely wife Jane is a "Cluster Head" and has been for 20 years. She was in remission for the last 3 yrs, but now the Beast is back. Luckily Imitrex works for her and will knock the Demon down in about 10 minutes. Man it sure beats the days of hearing her screaming into a towel in a dark bathroom. All you guys hang in there. I feel for all you Cluster Heads though I'm not one myself (Thank God)
Jon <>
Milford, MI USA
Sunday, August 10, 2003 at 11:35:29 (EST)

Excellent site! Thank-you! Gramp's Lamps cordially invites you to browse our web site featuring hand painted Gone With the Wind lamps & night lights. Find us using your favorite search engine or simply go to Thank-you.
Gramp's Lamps <>
Pa Dutch Country, PA USA
Saturday, August 09, 2003 at 17:06:43 (EST)

G'day people, I'm a 50 year old male who sufferred with CH some years ago. After a particularly bad headache lasting 6 hours, the last episode ended. It seemed as though it was saying to me "This is your last one, it's going to be a beauty". Recently after some investigation into a supposed heart condition, I was prescribed Monodur which contains isosorbide mononitrate which has the effect of dilating blood vessels. This nomally promotes headaches initially upon starting it, which are supposed to taper off after a short period. Instead of tapering off, I started getting some headahes which were remarkably similar to CH. I don't know if this will develope into a full blown episode of CH's, I hope not, I can't say I missed the little devils whilst I was CH free. Anyway, I decided to do a little investigation into CH and found this website. It was like finding a group of people who speak a different language that I can readily understand. It's not a club you would seek membership to, but it is very welcome. I have already learned of some therapies that work for other people. I thought I was fairly bad off with these things, but reading some of the accounts from members here, I realise my episodes were probably on the "better" end of the scale. For myself, I'm keeping a positive attitude on my latest developement and I know they are not going to beat me. I'm stronger than these nasty little headaches, they leave me after a while and I'm still here.I will win!!!! See ya.
beej <>
Boulder, WA Australia
Saturday, August 09, 2003 at 08:45:54 (EST)

Started with CH in my 20's. Doctors first diagnosed Tick Del a Rue. Finally went to Jefferson Hospital in Phila. PA. Diagnosed me with CH this was 1975. Medication at that time was Sancert & Cafergot. Thank god for Imitrex and oxygen and also predicone as a preventative. Imitrex injections take approximately 10 - 15 minutes to work along with a hot shower, then immediately a cold shower, then oxygen. Airconditioned room breathing in oxygen as deep as I could. Headache then will disapear within 10 minutes. Previously my headaches would last for 3 to 4 hours, took percocets to knock myself out so I could try to sleep through the headache. Now my 25 year old daughter has just started with the CH doctors have put her on Topamax 100 mg. Increasing the dosage weekly. Headaches will stop for approximately 1 week and come back strong. Then the doctor will increase the Topamax again. During the headache takes Imitrex needles to help pain. Headache does continue. My cousin also has CH she is 30 years old. I'm now 52 years old and THANK GOD I seem to be in remission for approximately 2 years. But even in remission I still get the sensation (a pounding) on the right side of my face, but not the severe pain or full blown CH. I am currently not taking any medications, or preventatives. I drink only socially once or twice a year and stick to beer only. I hope this helps just one person because I know how severe the pain is. During my worst attacks I contemplated suicide. My wife would take me to the hospital many times and they would inject moraphine or demarol this would drop the pain down to a pounding level or acceptable leval.
bill <>
ewing twp, nj USA
Thursday, August 07, 2003 at 20:12:03 (EDT)

Suffered CH in teenage year, of course, thought the worst. Extreme sharp pain in head and then the nagging headache, never treated. Now, working under very stressfuy conditions, in a Neurologist's office, have been experiencing CH which start out when I get up in the morning and the minute I start doing something, get sharp pains behind the left ear and up into my head. Does anyone have the neck pain first, this seems to be my scenario. Haven't tried conventional CH meds yet, only IBU and valium, whichis difficult to work with at work. Getting very depressed, and wondering if these symptoms justify CH or should I be investigating further. Stress seems to make it a lot worse.
ann libby <>
eddington, me USA
Thursday, August 07, 2003 at 07:17:44 (EDT)

Heh guys, I don't know if this will any of you but it does help with some of my Headaches. If they are Sinus related or suspected as Sinus, I have been using a Nasal Irrigation with Warm water (about 36 C) and a packette of Epson Salt. It does help sometimes relieve the pain. No miracle cure but at least takes some of the pain away. Hang In There Everyone!
Bill <>
Guangzhou, China
Thursday, August 07, 2003 at 05:35:36 (EDT)

Wow there are so many people suffering. I thought I was the only one who felt pain like this. I am sorry for us all, it sucks! I have been suffering for over 5 years now, the last major one that eased up a few days ago lasted eight days straight, nothing would make it go away. This pain is so debilitating, all I can do is lay there and cry while holding my head. The doctors say it is from a spine injury, it always seems to start in the base of my neck then it feels like my brain is getting squeezed so tight that my scull is going to brake. Doctors have tried so many different treatments nothing seems to work. I hate taking all this medication too. Well good luck, it was interesting reading about you guys. Good luck.
Dawn <>
Redding, Ca USA
Thursday, August 07, 2003 at 00:33:48 (EDT)

Aho, all my relations. Guess I'm about the only American indian (I prefer that to Native American because anyone born in America is a Native American) that suffers as you all do. I refer to my episodes as my "Season". Not in season now, but have suffered from CH since high school, over 37 years. Had many medical evaluations, but it wasn't until about 5 yrs ago that I found a doctor who took one look at me and said "He's having Cluster Headaches, give him oxygen". Since that time, whenever I begin a season, I go get a couple of bottles to breathe while I'm away from home, and a machine I use at home (plugs into a wallsocket). Wife recorded a BBC special on CH, which I just watched. So it prompted my to find a site where other folks truely know my nightmare. SO happy I found you. I know you all know EXACTLY what I mean when I say that, during my season, CH veritably controls my life. Can't eat, afraid to sleep, just flat scared to leave my house and be away from the oxy machine I depend on so much. This is such a horrible way to live, and I am just ever so grateful for this site and you folks; to know you are there, suffer as much as I do, and provide a support structure for my to rely on. THANK YOU !!!
Randall Hogue <>
Woodland Hills, CA USA
Tuesday, August 05, 2003 at 23:39:19 (EDT)

Hi everyone! Firstly, I want to say that it's so comforting to know that I'm not alone in this battle (although, in the middle of the night, you sure do feel as if you're the only person on Earth dealing with this). I've had CH for the last 13 years. They came every two years, but then starting happening every year, mostly springtime, every night for a month. Now, it seems to be "become" clever, and has stretched to two. Imitrex used to work well, but now I've found that a combo of Verapamil + Prednisone has given me my life back. It's also comforting to see that I'm not the only girl that gets them. My heart goes out to each and every one of you. Don't give up! Thanks again for listening!
Tracy-Ann Leith <>
Kirkland, QC Canada
Tuesday, August 05, 2003 at 14:26:21 (EDT)

Hi Everyone! Well let's see , how long have I suffered with a daily headache ? Over thirty years now. I can remeber one bout where I actually asked my wife to cut my head off ( I was not kidding at that moment) The pain is so bad sometimes it is almost unbearable. ANy movement, anything even thought, it has been quite debilitating at times. I have been diagnosed a number of ways but still nothing conclusive. Sometimes it starts with a ache in the neck ( I know I am in trouble) Lately for about the last 6 months.I wake up every morning at about 5Am with a headache. I usually takes about two hors to get rid of them with a combination of pain pills, sinus medicine and hot showers. It is really difficult to function somedays but some how I as all of you, continue on in Silence. It is not easy and no way to live. I wish one day all of us jsut wake up in the morning and there is never any pain again! Great Web site, I do not feel as alone now.
bill <>
Gunagzhou, PRC
Tuesday, August 05, 2003 at 08:55:11 (EDT)

This site is amazing from what i've read thus far. i look forward to educating myself enough to mabey never feel this pain again.
annie hewitt <>
santa cruz , USA
Monday, August 04, 2003 at 11:55:12 (EDT)

hey all i just found this sight friday and left a small message . but im haveing a hard time with the IM and chatroom stuff . HOW DOES IT WORK ? here i am after 25 years of CH's and an eight year headache free period and the beast is back....Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
ken c
nj USA
Sunday, August 03, 2003 at 17:28:19 (EDT)

i have had cluster headaches for 4 and a half months every day and sometimes 1 or 2 in the all started in april out of the blue.started with pressure pain to the neck and the back of my head. then spread to the right side of my head with pain in the right eye and watery like blood shot. doctors thought it was temp arteritis so they put me on deltacortril (prednisolone). thought i was cured. after i came off them my ch came back getting worse over time.seen a specialist he gave me beta blockers for the ch but it didnt this point i felt suicidal. is there no end to this unbearable pain,that leaves you totally exhausted.just finished my prednisolone had a couple of pain free days and nights.been to see a cranial osteopath had one treatment to see if the mid meningeal artery can be manipulated back into position.(the meninges are fibres covering the brain which have their own blood glad ive found this site i feel am no longer alone suffering this pain theres people out there that understand what were going through. i will let every one know how the cranial osteopath is going.take care everyone.
gwen <>
carms, wales
Sunday, August 03, 2003 at 08:47:19 (EDT)

G'Day all.My name is Mick and been a CH for lucky 13 years now.This is a great and informative site.....keep up the good work.My demon has returned yet again, only just last week..So I beleive that I have about 7 weeks to go..My headaches are unpredictable as in of the volume ..45 this week from 10 1hr am really tired this time around.I am 42 years old with 3 kids.I read on the site of all the drugs being used as preventitives,during etc.Makes me wonder what other damage are we doing.The last couple of times I have gone thru drug free.I am however seeking answers in chinese medicine(herb)I shall keep you posted on that.My chinese freind seems to think that blood flow is the problem..Anyway shadow alert will be back soon....mick
mick <>
melbourne, vic Australia
Saturday, August 02, 2003 at 05:13:49 (EDT)

lifes a b_t_h for us but lets not give up ....there is hope
ken capasso <>
bridgeport, nj USA
Friday, August 01, 2003 at 15:09:05 (EDT)

I wrote about a week ago and had been on my 2nd Cluster cycle, after 9 years of remission. Last night I had my first pain free day and night in 3 1/2 weeks. Praise God what a relief at least for the time being. I have many friends praying for me and I am so thankful for that support. I know God hears and answers. I am also thankful that Oxygen works for me. I wanted to tell others that I had such great response from oxygen after timing my cycles and finding what was happening. Mine were coming every 2 hours for about 12 hours, so I got the oxygen mask on about 10 minutes before they were due and most of the time they were thwarted. I am using a rebreather mask from a pilot friend and a 4-foot (very heavy)oxygen tank from a welder. It has worked fine other than it is really bulky to take into a theatre!! (Just kidding, but we do take it in the car if we are going to be out longer than 2 hours.) Saturday I also had my chiropractor do a sacro-cranial adjustment and massage and it relieved some of the tension from my neck. She said my head was VERY tight and hard. She was able to loosen the bones and scalp and get some more movement. The next couple days were milder and able to be relieved by OX and then Monday night and all day Tuesday was pain free!! We will keep you informed if they return, but we are thankful for the respite. The oxygen has been a God-send. If you haven't tried it you need to get on it at the first hint of one coming. Breath deeply and try to relax as much as possible. It takes the edge off the really bad ones and if I catch mine early enough they are aborted. Thanks again for this great site. We are telling everyone about it and many are starting to get the word out. You have at least 100 new people who know about cluster headaches. Education is the key for us right now. Gob Bless You and give you strength. Ken & Shannon Porter
Ken Porter <>
Nevada City, CA USA
Wednesday, July 30, 2003 at 01:57:14 (EDT)

BOY Am I glad I found you guys!This is only my second go 'round with clusters. Last time was about 10-15 yrs ago and only lasted 1 week. Didn't know how lucky I was then. This time, it's been 1 month - only 1 day per week pain free.Wanted to know how you folks deal with the time off work? Bosses generally don't think "a headache" is sufficient cause to be away. Can't afford to lose my job - I'm the bread winner.I just registered as a member - droopydrawers is the name.God bless you D.J. Best wishes for a pain free day.
Nancy W <>
Tuesday, July 29, 2003 at 12:25:14 (EDT)

My husband suffers from clusterheadaches. I am so glad that I found this site. It has helped alot. Wish I would have been computer oriented 10 yrs ago. May have saved alot of pain. Thanks again for being so helpful.
Danielle <>
Park Hills, Mo USA
Monday, July 28, 2003 at 09:23:04 (EDT)

I have suffered for 24 years with these headaches. Now my daughter who is only 11 gets them, only not as severe or for as long as I yet.
Gemi Neff <>
Temecula, Ca USA
Sunday, July 27, 2003 at 18:58:25 (EDT)

Pain is what I feel on a Daily basis. Nothing the doctor is doing so far is helping or breaking my cycle. Someone please help.
Richard <>
New Smyrna Beach, FL USA
Sunday, July 27, 2003 at 14:29:13 (EDT)

After a 20 yr battle with headaches labeled as sinus related, I received a cluster headache diagnosis. The problem is currently chronic. I'm looking for recommendations for a cluster headache specialist in New England between Boston and Portland ,Maine.
Bill <>
Saturday, July 26, 2003 at 23:14:21 (EDT)

Hello, It is nice to see that I am not the only one out there. I have had CH since 1985. Reading some of the letters sounds as though I may have wrote them myself during one of my attacks without remembering (lol). I am looking forward to chatting with fellow clusterheads. Thank God for this site. rh
Raymond Hunt <>
Richmond, Va USA
Friday, July 25, 2003 at 13:08:20 (EDT)

Help need doctor in so. calif....
patricia mellas <>
valencia, ca USA
Thursday, July 24, 2003 at 12:23:33 (EDT)

I am a very young 59 yr-old male who has been healthy most all my life!! I did have a couple head tramas when I was young and a bit of stress as an adult (which may be my triggers). Just started my 2nd bout of clusters. The last one was 9 years ago. I forgot what fun they are!! Not!! I have been having headaches every 2 hours for 12-14 hours or so starting in the wee hours when most people are sleeping and then "remission" for 8-10 hours for which I am wiped out. I am in my 3rd week of this cycle and they seem to be getting a bit stronger. I am one of the lucky ones helped by oxygen and have been able to time my bouts and get on OX before they get bad or alleviate the pain altogether by getting on 15 minutes before another one is due. I miss it sometimes but having the mask handy has helped greatly. The medications haven't been much help as I hate to feel drugged all day after I've taken them. Last night I would have taken anything though. My sweet wife was there to hold me and help get me through the worst one I ever had. Found the OX tank was low and I think that was what precipitated the severeity of that one. This site has been a God-send for us as we deal with the reality of Clusters again. The first time, it took so long to diagnose that the cycle was almost over by the time we discovered what would help. It was helpful to be able to tell the doctor what we thought they were and tell her what helped the first time. Of course the medicine that we took then is not available anymore and I don't know if it helped that much anyway. Made us feel like we were doing something anyway. Thanks again for this valuable aid to all the CLuster sufferers and their care takers, wives, friends, and families. The information here is more than thorough and helpful than anywhere else I have checked. I will put input in as I progress through this cycle. Thank You Again for all the time you have devoted to this great site... God Bless You for your efforts... KP
Ken Porter
Nevada City, CA USA
Wednesday, July 23, 2003 at 16:01:58 (EDT)

I have been suffering from clusterheadaches since i was 15. I am now 27. Last year was the first time I ever went to the doctor regarding these headaches. I always assumed they were a sort of migrane. When my doctor told me I suffered from clusterheadaches and prescribed Imitrex I couldn't believe I had let myself live through that much pain for so many years. this is the first spell i have gone through since visting my doctor last year so i thought i would see what kind of info i could find,and i found this sight. thank you. my doc also said this type of headache is predominent in males-are there many women on this sight?
M'lis <>
Grand Junction, co USA
Wednesday, July 23, 2003 at 00:28:35 (EDT)

If you've tried to post to the guest book in the last week and got an error, try posting again. It's fixed now. Sorry for the trouble!
DJ <>
Wichita, KS USA
Tuesday, July 22, 2003 at 11:10:19 (EDT)

I began getting cluster headaches in 1986. It was the end of 1991 before the problem was correctly diagnosed. Since then, 10 mg daily of flunarizine effected a complete cure. In the last few weeks, though, I have begun to get attacks again - relatively infrequent, and some quite mild. I have increased flunarizine to 15 mg per day. If this does not work, perhaps I shall try pizotifen. And I thought the damn thing had been put away. Indeed, had almost forgotten what fun it was. I am male and now nearly 53.
Mukul <>
Tuesday, July 22, 2003 at 11:07:37 (EDT)

Morning everyone! I found this site a few months ago and finally after years of suffering dreadful headaches, we finally thought we had found the answer to my partners' problems. We have been down every medical route and no one could/would help him. We could both relate to what everyone has said on this site and at last, armed with information we saw his Neurologist last week (for yet another useless appointment). He dismissed the possiblity that my partner was suffering from cluster headaches (at least he had heard of them) as my partner has pain on both sides of his head (nine episodes yesterday) and he told us that this wasn't possible so therefore he doesn't suffer from them! He said as there was nothing 'wrong' with him, that there was nothing more he could do. No further help, advise or direction to go in! Can this be right? Has anyone else out there got any ideas as to what we can do next - believe me, we are so desperate to get some sort of help and treatment for him but what do we do now? Has anyone else encountered this blank refusal to do anything? Good luck to you all and I hope that you are all having a bearable day.
Claire Finn <>
Hastings, England
Monday, July 14, 2003 at 06:30:48 (EDT)

First, I'm glad to see there are women at this board as I personally know of no other women who suffer CH. Second, I've noticed a few people who have be prescribed tricyclic antidepressants for CH but are wary of taking them. My doctor did the same and they stopped the CH dead with no side effects to mood or libido. Give them a chance, they just may be the answer.
sara grier <>
cincinnati, OH USA
Saturday, July 12, 2003 at 10:57:20 (EDT)

Started having Ch's at the age of 16. Misdiagnosed for 10 years as having sinus headaches. I have had Ch's in every month of the year. I am episodic. Just no rhyme or reason for when they start. I have worked 1st, 2nd and 3rd shifts during my 28 years of Ch's. Mine tend to happen in the 1st 2 hours of sleep or after i have sat down and relaxed. I have contemplated suicide before. Almost like wanting revenge, Blow a hole in that SOB! Always realized that if i could just find that light at the end of the tunnel, everything would be ok. It is what keeps me going!
Patrick Alexander <>
Waterloo, SC USA
Friday, July 11, 2003 at 12:27:37 (EDT)

HI your website is great .I knew i wasn't the only person who thought he or she was crazy.
Alpha Brewer <>
Corsicana, TX USA
Wednesday, July 09, 2003 at 16:34:03 (EDT)

sorry entered my e-mail address wrong
martin <>
habrough, uk
Wednesday, July 09, 2003 at 00:03:38 (EDT)

Hi I have suffered with CH for three years. The headaches start and I have 4-5 weeks with attacks, 1-2 a day lasting on average an hour then the cycle breaks and 4-5 weeks free. I have tried a number of different drugs with no success, it was suggested I try acupuncture to help. My cycle started and off I went to give it a go also with the acupuncture a nerve block to the back of my neck was given. I couldn't believe it my cycle was broken and I had 8 weeks pain free. My CH returned and I went back and had another nerve block and the cycle was broken again. I am now waiting to have the nerves frozen in hope for a long-term cure. When this has been done I will leave another message if successful.
martin <>
habrough, uk
Tuesday, July 08, 2003 at 23:53:20 (EDT)

I've had cluster headaches for 8 years now where I get them every day (night) for about a month and half and then they go away for about a year. Despite seeing doctors about them, it was only when my husband found this site that we realized I was not alone and that there was a name for my headaches. It is nice to know I'm not the only one who has fantasized about hitting my head on a sink! After looking through much of this site I do feel like some treatments are missing. Hardly anyone mentions massage. I am a massage therapist and I have found that doing deep tissue massage and trigger point therapy really really helps! So does myofascial release. It doesn't immediately cause the cluster to go into remission, but it does help me go from a sobbing wreck to a calm person who can sleep again. I highly recommend going to a professional massage therapist or someone who specializes in Myofascial Release (I am familiar with the John Barnes method and have received several treatments that helped reduce the frequency and severity of my headaches) and learning how to work on your own trigger points. Get your loved ones to learn the basic techniques too. My husband helps enormously by pushing on the knots by my shoulder blades and up my neck to the base of my head. If anyone wants more information please feel free to email me. I am happy to say that I seem to be entering a phase of remission.
Jennifer Briggs <>
Pittsburgh, PA USA
Tuesday, July 08, 2003 at 19:01:01 (EDT)

Hi--well, I have finally reached a real "home" page. I am in my fourth series of clusters in a 5 year period, and though the Triptans have made them ease off a lot faster, the first 45 minutes or so is, as everyone knows, pain beyond belief. I'll be posting and hoping for some friendly advice. Thanks for being here!
Alan Crooks <>
Tuesday, July 08, 2003 at 10:42:23 (EDT)

i was amazed to find this site. i cant believe how many meds i have tried over a year in a half. they (the drs) are now putting me on amitriptilyne 25mg.i am told i can only take half if i want. i havent taken any yet because i am married and i know what antidrepressants do to your sex life. the new frova doesnt work completly but its better then getting hooked on lortab. i too did the whole ninyards. weight loss,no caffine,no choclate,no alcohol over the year period and nothing helped, im still searching
Karen Fisher <>
Bountiful, Ut USA
Monday, July 07, 2003 at 10:23:19 (EDT)

I am a mother of an 18yo son who has been suffering with these headaches for approx. 4 yrs. now. I am a first timer to this web site and can only hope to be able to gain some more knowledge about what my child is going through. He is at the end of his rope and and is not being open for any new treatment. I on the other hand have NOT given up. If anyone has any new information on what i can do to help my son, I would gladly appreciate it. Thank you.
Catherine <>
Mauldin, Sc USA
Saturday, July 05, 2003 at 14:04:52 (EDT)

I started having headaches when I was 18. The pain was so intense that I thought I had a tumor!!! Doesn't everyone? After YEARS of pain, crying, people thinking I'm lazy and trying to get out of work for 3 weeks every year until I found neurologist that told me I was not crazy and that I had Cluster Headaches. OK now...we were getting somewhere. He could actually describe to me what I was feeling. These happen to me in November or January but only once a year and for three weeks at a time. I tried everything under the sun even Imitrex. That did not work for me in 1999 but in 2001 I was in the hospital with one so bad that they gave me a shot of Imitrex. It worked within 15 minutes. The doctor in the emergency room? His wife was a sufferer and he knew that Imitrex worked for her so he tried with me and now? Oh yes, it really works. The steroids that some idiot kept giving me only made me fat so once I got off them and over the headaches, the Imitrex was the next stop. Thank God for this stuff. I never knew there was a website for this nor did I ever imagine that other people like me were out there. When I read all these letters people wrote, describing EXCATLY what I always feel, I was so amazed. I am not crazy, and I do have headaches for 3 weeks straight and I am not making it up. I actually had a "boss" tell me once that the neurologist didn't know what he was talking about and that I needed to work with the headache or get fired. Needless to say, I told her where to go, while I was having my headache and told her that I would sue her and the company if you tried to fire me and she was the one that ended up getting fired for harrassing me on my illness. I live in California, and you can not do those things here. So, the next time I have my headaches, which will be soon, it's been a little less than a year, I will be on this site screaming in pain with everyone else. Will there EVER be a cure?
Melissa Capps <>
Vista, CA USA
Thursday, July 03, 2003 at 19:08:09 (EDT)




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