Cluster Headache guest book
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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 March 2001. Thank you for your continued active involvement in this site and keep those guestbook entries coming!


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25 years and still counting. Started with chronic ch, once or twice daily for 22 years or so, now it's periodic (early in the year ) Last night I had the mother of all ch attacks, so i looked for help and came here.
Dave Lloyd <>
Ironbridge, Shropshire England
Saturday, March 31, 2001 at 06:30:53 (EST)

Cronic ch who has never met another cluster head. It's good to know I'm not alone
Martyn Woodcock
Friday, March 30, 2001 at 13:07:41 (EST)

Hello To all Cluster Heads. I'm back on this site after a two year (however it seems like it was yesterday) break from the monster we all suffer with. The last bout took 8 weeks of living hell, to over come (I'm hoping to nip this one much earlier). I learned (thanks to read all of your suggestions) the last time that by taking Verapamill along with Wigraine was best for me. I have also found that after almost 30 years of this beast, it has gone from twice a year to once a year, then approx. every 16 to 18 months, to now (every two years). I look forward to that day when I wake up and realize that I've gone years without a cluster and can look forward to life without fear. To those of you who have suffered these dreadful things and have families that stood by you year after year, given them thanks. You have truely been blessed. These killers took its toll on mine before I found this site years ago. No person, who has never experienced a cluster or been able to read the tales of others, can understand what we go through. I am now on my diet of Wigraine and Verapamil (and it is working again). I will give up any thought of having a glass of wine with my girlfriend at dinner, or a beer while working in the yard this spring. I will give up my usual 6 to 8 hours of sleep each night (knowing I'll be awaken sometime between 2 and 4 AM). I have already advised my employee that there will be times that me office door will be closed and lights out. He knows I won't be sleeping on the job, but in pure hell for 20 minutes or so (he is a very understanding boss). I have maked off on my calendar, 8 weeks from now, Memorial Day maybe my day of Thanksgiving. Bruce
Bruce Bell <>
Sherwood, OR USA
Thursday, March 29, 2001 at 17:04:52 (EST)

I'm portuguese and I'm 36 years old. Yesterday I was diagnosded to suffer from CH. It's been 4 and a half years now it sarted, and I was all the time convinced I had migraines. I felt very happy to find this site and to discouver all these people to whom I can describe my illness without being misunderstood. I recognised myself in all your stories. Thank you all for the support.
Jose Alexandre Pereira <>
Santiago do Cacem, Portugal
Thursday, March 29, 2001 at 10:01:24 (EST)

Hallo, its very good to meet You all in the net. I am 56 now and 25 in CH-Years. It is like it is, it is not killing me, so I do live with it and without it. js
jochen <>
neubrandenburg, germany
Thursday, March 29, 2001 at 08:19:32 (EST)

hi all, i'm 33 years (m) and i've CH since 1990, first it started episodically and since 1992 it's changed to chronical. it comes up usually at night 2-3 a.m I've tried all the stuff like cafergot, dihydergot, isoptin, oxygen, ......tin and all that shit and nothing worked like they have promissed and now after a bloodtest they found out that my lipoprotein and colesterin level is perhaps the reason for my CH. i try now to some natural medicin and i've to care for, what i eat. hopefully it helps, at least little bit. o.k. guys don't give up the fight, you can get it if you really want ;-)
Martin <>
Wagen, SG Switzerland
Thursday, March 29, 2001 at 06:21:11 (EST)

hi, i don't suffer from clusters. but one of my best friends does. i really care about her and wants to learn as much as i can to help her. her name is nancy.
leesville, sc USA
Wednesday, March 28, 2001 at 21:32:42 (EST)

hi my name is jack i suffer from cluster headaches and have for the last 15 years.I just finished having a bout with cluster headaches that lasted 10 days i find this site very interesting im not good at putting things down in writing so i will say good bye now and thank you for the very informative site Thank you and have a good summer
jack <>
point edward, canada
Wednesday, March 28, 2001 at 14:20:55 (EST)

I have had (ch) for 16 years. my cycle this time has lasted 16 months.I have seen eye docs , dentists, many family docs,2Nerolagests 2 Chiropractors.Had 2 MRIs andc/spines.Too many meds to count. Imitrex didnot work.Now I'am on Maxalt and Vioxx yes Vioxx anarthritis med, seems to help when they are not real bad!!! (If there is such a thing. Thanks for listening. Tim
Tim Wingert <>
Ft Loudon, Pa USA
Wednesday, March 28, 2001 at 12:27:35 (EST)

My headaches started when I was 18. I'm now 42 and in the middle of a cycle. My cycles last 4-6 weeks with 2 headaches a day. The time between cycles varies with the last one being 5 years. That was a relief, I thought they were gone for good but 4 weeks ago I got knocked on my butt with another cycle. You all know the pain, no sense in trying to describe it. It can cause you to just give up and cry. I have finally found relief, Imitex. My doctor has tried everything over the years but this stuff works. It gets rid of the monster, unfortunately it doesn't keep it away. It always comes back. With the Imitex I only have to suffer for about 30-45 minutes twice a day instead of 4-6 hours twice a day. I still dread the headache but I know I can beat it. My only problem now is fighting with the insurace company to pay for the prescription. My insurance only allows me 18 pills each month. I use that up in 9 days. Thank God for my doctor giving me free samples or I don't know what I would do. I would have to go out on sick leave because I wouldn't be able to work. Lucky for me my cycle has an end to it. I don't think I could handle the never ending cycle, my heart goes out to you unfortunate people. My cycle should end in the next few weeks I hope everyone else's does the same. Thanks for listening.
Jim Moody <>
Tupper Lake, NY USA
Tuesday, March 27, 2001 at 20:32:05 (EST)

Surprising Relief from Migraine Headaches by Pete Fratus I’ve suffered from vascular migraine headaches for over 20 years and I recently found relief in an herbal remedy called Feverfew. I’m not much of a believer in herb therapy, so I was surprised that this stuff actually works. Ever since I started getting migraines, I’ve been seeing doctors about them. Originally, I thought they were earaches. An emergency room doctor gave me Fiorinal with Codeine, a powerful synthetic barbiturate painkiller. Over the years, I’ve tried everything from A to Z including Caffergot, Imitrex, and Zomig. Most didn’t work at all. Some worked a little. Zomig worked the best, but really makes me sick to my stomach. Of course, it only works for a few hours and you’re supposed to take it no more than 4 times a month. About 7 weeks ago, I found information about Feverfew on the Web stating that it was recognized by many, but not the FDA, as a treatment for migraines. The bottle I found at the store said it was recommended by the London Pain Management Clinic (or something like that). So I started taking 380mg a day. After two weeks, I decided it was just another herbal waste-of-time and was going to throw it out. I was still on the same headache I had been having for the past three weeks. Before I threw it out, though, I decided to increase the dosage to see what would happen. I started taking 3 a day and just 2 days later, my migraine headache was gone. It’s been 5 weeks and I haven’t had a painful headache since I started taking Feverfew. I’ve found it in every drugstore and vitamin store I’ve been to. And what I found was that 380mg is the mild dosage. The concentrated dose is 1000mg. That’s what I take, now. I still get the feeling that I’m going to get a migraine, but it never breaks through. I’m still on the same diet, job, stress level, and no-exercise regimen that I was on before the Feverfew, but the migraines are gone. I now longer have to take medicine with me everywhere I go. I don’t go through everyday feeling nauseated. Because I’m not taking any of that nasty migraine medicine, my speech isn’t slurred. This stuff is just great!
Pete Fratus <>
Denver, CO USA
Tuesday, March 27, 2001 at 17:52:55 (EST)

Hi.My name is neese and i am a sufferer of cluster headaches for about10 years. They come in cycles and the most recent is now. I quit my job yesterday because i cant function properly at work. Its quite frusterateng because i have a family to support.My spouse Mark feels helpless when i have one because theres nothing he can do for me to relieve the pain.He and I both dread the words " im getting one". Not sure where to turn so if anyone can help me please e-mail me, or if you just want to share information.Im glad to have found this site because i know now that im not alone. Neese
Neese <>
Sutton, Ak USA
Tuesday, March 27, 2001 at 15:08:09 (EST)

my pain is killing me slowly.i have had ch since first heart goes out to all that suffer with this beast. God bless
jason ewing
lawrenceville, ga USA
Tuesday, March 27, 2001 at 12:53:27 (EST)

To all my fellow CH friends. I just turned 55, have had the wonderful CH since age 16. From my new Dr. I just found out that you usually outgrow them by age 60!!!!! what wonderful news, only 5 more years. My how the time flies when you are having such fun!!!!! I can't think when I have had any time off from these CH's, maby in 66 have finally quit counting. What do some of you use?? Have tried Imetres both shots and injections, the pill takes too long to work. It does not keep them from comming back but it does stop them in their tracks, Have just got off 6 days of steroids, eased the intensity but not the frequency. Have taken a drug called Sansert and Verapamill (sp) they slow them down to about one a day, but that one is a Duzy. Some of the other things that I have tried is Acupuncture (sp) Ice packs, heating pad, pinching my hand to the point I look like a truck has run over my hand, Cant lay down it gets worse, sun light is to bright, its not fun. Thanks for listining, Guess I just needed to vent my frustrations. Would love to here from anyone with their solutions to this problem. Thanks Again.
Arthur Bennett <>
Columbia, mo USA
Tuesday, March 27, 2001 at 08:59:51 (EST)

Thanks, I am glad to hear that I am not crazy
Kathleen Pertzborn <>
Mc Gregor, Mn USA
Tuesday, March 27, 2001 at 03:16:17 (EST)

I have been suffering ch for over a year now.Have had 2 children & the is so much worse than childbirth!I now can not drive because I never know when another BIG 1 will medication so far has helped.I would like 2 hear from other suffers,some one has got 2 help me!
Sara A.Hall <>
Shannon, Ms USA
Monday, March 26, 2001 at 16:52:28 (EST)

Found this site sometime ago...I think during my last "cycle"...and it seems to have evolved nicely. Thank you!!! Suffered first cycle at 16 for a week and then didn't see the "demon" again for 7 years. I have 2-4 weeks worth at 7+ on the kip scale every year this time. If you live near LA,CA, and you can arrange/afford it, Dr. David Kudrow (sister Lisa) is the man to see. His father was published 20 or so years ago on Clusters and he seems to have passed on the knowledge and compassion of this evil phenomenon. Nonetheless, now that I know you guys are all out there feeling my pain, and probably about the same time in the night....say...2ish?'s helping me get through this. My wife has helped as much as a non-sufferer can and that has made the difference. If you suffer alone, find someone, ANYONE, to help you pull through. Give 'em this link to this site. Make sure they read as much as they can. I know it's hard to communicate while under attack but call them when you start.....and call them when your "on the other side"....try it a couple of times. Yeah, yeah, I know this is cheesy and hate reading this kind of shit sometimes myself. But, it almost gives you a goal, a short term objective to think through. Also, if you're comfortable enough, give a friend or two at work this link so next time they'll understand what your going through. I just recently explained my way out of a room in the middle of a very important meeting with the lame-ass excuse "man, I've got something in my eye (i.e. "the Son of Satan)"...can you all excuse me for a moment"...never to return and 2 coworkers looking for me. Imagine the humiliation. Let's all stick together. And at some point, we should all try and put together some regional support meetings.......face to face....person to person, in a group.....who knows?
David L. <>
Los Angeles, CA USA
Sunday, March 25, 2001 at 21:31:23 (EST)

I have suffered for 17 yrs with what i,m now told are cluster h/ aches can anyone help with a non toxic relief or something that helps that won,t end up killing me. all replys will be welcome thanks bruce
Bruce Warlow <>
Timaru, o new zealand
Sunday, March 25, 2001 at 03:38:41 (EST)

I feel like I just found the Holy Grail!! Im 31 years old and been suffering with these types of headaches since I was about 19 or so. I too was misdiagnosed with a sinus infection and given Augmentin. But it did nothing for the swelling or the undeniable urge to rip my left eye out of the socket. I was in college when these started. I really dont do the Dance-Im not good a dancing anyway-but I kinda shuffle around a bit beating the tar out of the pillow and the mattress and the wall. I find that if I sit in the bathroom in the dark with the shower on the steam helps relieve the pressure on the sinuses which helps me deal the pain. I just have gotten over my latest cycle. It started on February 28 and now its March 24 so its almost over. I probably wont have another atttack for about 3-4 years. My last cycle was in 96 and I was diagnosed as having a migraine..sensitivity to light vomiting...went throught seven or eight different treatments then...thank God for Imitrex..the injectibles work the fastest. The nuerologist I saw said they were migraines and possible clusters. Since I didnt keep a record then we really couldnt tell. Now for this cycle I started to keep a diary out of curiosity and saw that they were happening every 12 hrs, then every 3, and almost at the same time. Anyway, for those of you out there that are going through this for the first time or have yet to be diagnosed...try to keeep a time log and day..also write down what you did for pain..or just describe the pain. I know that thats the last thing you want to do...but it does help. I showed my Dr. my time log this time and immedialely he said thats a Cluster and the treatments started. Im finishing up the Amitriplyne and Hydrocode/APAP combo now and my cycle is almost over. I had a mild one yesterday and today..ask me what mild means. So I might have to go back. Well-enough-Im so excited and amazed that there is a website dedicated to this. Thanks!!!
Ed Tsyitee Jr <>
Richmond, Va USA
Saturday, March 24, 2001 at 21:29:52 (EST)

just been diagnosed with cph which i dont believe because i dont get 15 headaches a day i get 1 severe headache at night and maybe 1 or 2 during the day.i have a constantache all the time. this has lasted every day for 3 months. i have been given indomethacin which i have just started today. has any1 tried this medication before and if they have did it work?by the way i have seen 8 doctors and been in hospital for a fortnight i dont believe any of them know anything about cluster headaches my own gp is still convinced im stressed!!
joanne shaw <>
north scotland, scotland
Saturday, March 24, 2001 at 18:52:05 (EST)

Where to begin? I am 37 years old and have had increasingly debilatating headaches since I was 3 years old. I have had MRI,EEG been to chiropractors and countless doctors. Due to the fact that lately I am so frustrated and tired of the pain, I cry when I see my doctor, he feels it's emotional or all in my head. Very much a let down every time I go. I have been married to a wonderful man for 10 years, he has had 2 or 3 tension headaches the whole time I've known him and he rarely ever misses work. I,on the other hand, am currently unemployed and don't see any way I can work without missing at least one day a week. I'd rather be poor than deal with the problems it causes with co workers and employers! I have considered disability because it seems the guilt of not bringing in an income only makes it worse. I have tried Zomig, Imitrex, Maxalt, Inderal, Depakote, Celebrex and dozens of different pain meds - most of which seemed to cause rebounds or knock me out for 8 hours only to wake up still hurting. I have alot of nausea and vomiting also. Anything can be a trigger, weather, food, stress, physical activity. I read Gary Kemptons (?) message from 3/21/01 and was completely floored! I had no idea that so many had reached a conclusion that I try not to dwell on - maybe it would be best for me and my family if I wasn't around to suffer or make them feel so helpless. After 10 years, my dear husband is at a loss and I can't talk to him anymore because I'm beating a dead horse (lucky horse!) Anyway, thank you so much for letting me share my story. I hope you find relief Gary and all soreheads. Susan
Susan Caldarera <>
Marble Falls, AR USA
Saturday, March 24, 2001 at 09:57:09 (EST)

I am 69 years old and have suffered episodes of cluster headache for 25 years. I do not need to tell you how much suffering that involves. At one time, I was able to get relief using Ercaf tablets. For me this medication provided relief from bouts and shortened my epidsodes. For some reason, the last time I tried to get a refill of my prescription (December of 2000), the the pharmacist informed me the medication (Ercaf Tablet By Genev) was no longer on the market. Since that time I have had no relief with medication. At this moment, I am in an episode and my only relief is vigorous exercise four to six times a day. Although this does give me relief , it is only for about an hour and a half and I have to exercise again. I could live with even this but I must have major surgery in three weeks and I do not know what I will do during my recovery period. Any suggestions gladly accepted.
Hamah R. King <>
Dallas, TX USA
Saturday, March 24, 2001 at 02:44:48 (EST)

Hi. I am not sure where to begin. I am 36 yrs. of age and started getting headaches at 13. I have been misdiagnosed with epilepsy, seizures, drug addiction, food poisoning and several other interesting ideas. It took 11 years before I was correctly diagnosed with Cluster. Episodic they said. I have lived with these 1-5 times a day, 12-24 weeks at a time. Sometimes there is remission for a year or so. Right back at you with double the intensity. May I describe my personal tormenting spirit. It begins whith a nudge on the inside of my head that feels like a sulphur burn of a matchhead. At once my body goes clammy and from the neck up starts to sweat. At this point anxiety sets in and the blood pressure goes up. I mean up. One perimedic took a reading of 220 over 180 and thought I was going to die. The next stage is the blinding, stabbing, lightning jolts of pain centered from the sulphur burning. The left side of my head from the neck up is totally affected. Conditions that look like a stroke appear, droopy left side of face, slurry speech, eye swells shut, tearing, nautia, vomiting, all of which occurs within 15 minutes. Then the pacing starts. The rocking starts. The beating on the pain starts. The crying for help. The pleading with God. The wish for an end. ANY END! So you go to the Emergency room.How many people are ready for a headache to be an emergency. The one trip that stands out in my mind is when my wife was called to register me in. Me, writhing in pain, unable to speak for myself found myself being tied to the bed. The next thing I knew I was being held down and a tube being forced into my stomach thru my nose. Thinking I had od'd they were going to save me by pumping my stomach. I'm not sure where I am going with this but I guess I am at my wits end. I have no insurance to be able to afford the remedies that are prescribed. I am taking my moms prednisone to prevent an attack and it works. Problem is all the side affects are starting to overtake. Clinic appt in a couple of days should get me the right prescriptions to wean off this prednisone. Am looking for a non-prescription abortive that I haven't heard of in 23 years. Most remedies work the first few times and then we are into rebound. Help.
Jerry <>
East Haven, Ct USA
Saturday, March 24, 2001 at 01:53:31 (EST)

Hi, my name is Claudia and I'm 20 Years old, I've suffered from cluster headaches (migrane) since I was 8 years old, but now lately the pain has been incresing, and it really is effecting my social life, my work, everything, I knwo I am not alone. I would really like to try massage therapy, to release stress, and well I also try breathing methods, one has really have to try anything that might work to reduce the pain. I would love to hear from people who try things and like to help others!
Claudia Chavez <>
Mount Pleasant, Tx USA
Friday, March 23, 2001 at 13:44:38 (EST)

Hi. First I apollogize for my terrible english. I found this page after 16 years of suffering from Cluster headaches and now Im really excited Ive found all you people. Its releafing to know i'm not the only one. Well, after saying hello, Ill surf this page. Thanks for this oasis.
Jaime Brash Espinosa <>
mexico, mexico
Thursday, March 22, 2001 at 12:53:34 (EST)

Hello! I don't suffer from ch but my husband does and I know the pain that is felt by all of you. The feeling of hopelessness comes over the house when I hear the words " I'm getting one". This episode got so bad he was in the hospital on a moriphine drip. Now nothing touches the pain and and they just wont go away. I don't know how anyone stays sane suffering from this. It's insane that no one can help. I would greatly appreciate any advise or suggestions. Please feel free to e-mail. Thanks my prays are with everyone that suffers from from this horrible condition. Jenny
Jenny Tuton <>
Kansas City, KS USA
Thursday, March 22, 2001 at 10:51:24 (EST)

hi , guys , roby from newzealand here . Im a cronic cluster suffrer of 7 years , just making myself known thanks
roby <>
Ashburton , new zealand
Thursday, March 22, 2001 at 02:41:08 (EST)

Wow, I just found this sight last night. I hope I will be able to participate in helping others and maybe finding some new strategies myself. I find it odd that no one seems to be using the Ultram-Amitriptyline combination that has made my life so much more managable.I look forward to this.
Mike McComas <>
Raleigh, NC USA
Wednesday, March 21, 2001 at 15:55:56 (EST)

Help! I don't know which category my headaches fall into. Can anyone out there give me some advice? I go for months without a headache, then, I suffer daily for a period of weeks or even months. I've tried to identify triggers but it seems no matter what I do, if I'm in the middle of a headache "period" I'm bound to get one. Sometimes the pain will only last for 30 minutes, sometimes until I manage to get to sleep. Sometimes I wake up in the morning or at night with the pain. When I am about to get a headache, my left eyelid droops, soon after my eyes start to feel like they are being poked out. The most intense pain is actually in the eyeballs, but the bones around the eyes feel tender and bruised. Then the back of my head starts to hurt. I close my eyes and push on them, I also squeeze the back of my head but this doesn't seem to help. However, I definately DON'T feel like thrashing around or banging my head off the walls, Even sudden movements of the head are agony. And I don't suffer the amount of pain that some of the people I've read about on this site do. I've spoken to migraine sufferers, and I don't think I have those, but on the other hand I'm not sure the pain I suffer is intense enough to be cluster headache. (Although it is extremely painful) So, can anyone out there help or advise me? At least if I know what I'm dealing with I might be able to find a cure.
gary kempton <>
london, uk
Wednesday, March 21, 2001 at 14:12:48 (EST)

six years ago i started having headaches and was diagnosed with trigeminal neuralgia. after 6 months of tegretol and neurontin they went away, now they're back. i have three small children and run a day care. being on the medication makes daycare impossible and me nervous about being alone with my children. the pain is intense and i am very discouraged, any support is great! thanx.
lisa <>
vancouver, wa USA
Wednesday, March 21, 2001 at 13:36:01 (EST)

Thank you for developing this site, so I know that there is safety in numbers! Email me, jokes, helpfull hints, anyyyyyyyything. I'm going slightly crazy here these days!
Robin <>
Erie, PA USA
Wednesday, March 21, 2001 at 13:13:13 (EST)

Merck has stopped distributing Indocine suppositories in the US? Can anyone help me in locating a non generic source world wide? I have ordered from the Netherlands and used compounders in the US without success.
Victoria <>
Boston, MA USA
Wednesday, March 21, 2001 at 10:14:35 (EST)

I'm very happy to join the club! Suffering CH for more than 12 years.
Arnold <>
Ridderkerk, ZH The Netherlands
Tuesday, March 20, 2001 at 16:27:15 (EST)

I finally found this website today and have learned alot from everyones stories. I am 28 years old and have hade clusters for almost 8 years now. I rarely go one day without getting atleast one. Most of the time I get 3-5 per day. I wanted to know if anyone else with chronic clusters, have almost constant back pain, trouble sleeping every night, and are always tired? Is this common, or is this another problem I might have? I don't have insurance, so I can't afford alot of test that will not help me find out the problem. Any comments or suggestions would be greatly appreciated. I'm like alot of you , that have been on alot of different types of medication that doesn't help. Do these clusters ever go away? Is there any hope of finding a cure. Since I have headaches every day, a can't take alot of medications. Most of the medication that helps, I can't stay on. They will kill me,or do permanent damage over long periods of time. Has anyone found anything that can be taken for long periods of time that will help? Thank you for and advice that you might can give, and god bless you all that suffer with these demons.
Tuesday, March 20, 2001 at 13:47:33 (EST)

Yeee haaa!! I knew I wasn't alone and now I'm finding out that one of you lives less than 3 miles from me. I don't wanna die anymore cause I have a new strength in all of you. I've been chronic for 12 yrs and very suicidal, if it werent for my childrens sake I would walk no more. Lost another job and It's grat cause now I qualify for medicaid and get all the imitrex I want for a buck a shot. Up to my limited 2 shots a day mind you. But thanx to this site I'm now streching it to 4 shots a day and am suffering very little. In fact I laugh in the demons face when he comes a knocking cause me and my imitrex will just kick his ass, until I find another job that is and like most the insurance wont cover it or my o2 and I will just probably crawl back into my dark hole again and wish to god I had a gun. But for now I love you all and if you have any questions like most of you I too am an expert compared to the neuros I've seen. Wish there was one out there who suffered this curse like we do, I believe we would then see a cure.
Lenny Aldous <>
Gloversville, NY USA
Tuesday, March 20, 2001 at 00:58:56 (EST)

Barometric pressure changes give me my most intense CHs. I have had CHs for the last 17 years. I think it goes back to pre-eclampsia during one of my pregnancies. It changes all the pressures in your body including your heart and in the eyes. I've tried many medications and have eliminated many foods from my diet. I've had sinus xrays and a MRI. Barometric pressure changes are the biggest factors in giving me headaches. If I can be of any help to anyone out there with questions, I would love to help. Write me.
Monday, March 19, 2001 at 18:57:30 (EST)

I don't know why I didn't search the web earlier. I guess I was listening too much to doctors who would say "it's normal, men get headaches at night. Live with it." Finally a doctor told me about Clusters and that's when I searched. I was tired of people looking blankly in disbelief when I tried to describe the pain. I know they are thinking, "liar, no pain is that bad." Or they say, "yeah, my mother gets migraines too." I new that these were not migraines because I have never heard someone describe an episode that came close to the way I felt. I would tell people that I had 3 fingers cut off and re-attached, but this was worse. I never felt so Isolated in my life. After finding this website, at the very least I know that the pain is not (sorry for the pun) "in my head."
Tom Mahoney <>
East Greenwich, RI USA
Monday, March 19, 2001 at 11:33:06 (EST)

ive had cluster headaches for 25 years/ every year or two/twice a day/3 months at a time and live in complete fear of the pain.
Terry Claydon <>
High wycombe, bucks England
Sunday, March 18, 2001 at 15:52:04 (EST)

I've been a sufferer for 24 years and just found your website. I can really relate. fortunatly I no longer suffer every day. Now they only hit me for 2-3 months a year [it used to be every day] Great site Thanks J.B.
John Beck <>
Indian Rocks Bch, Fl. USA
Sunday, March 18, 2001 at 01:21:52 (EST)

About a 2 and 1/2 year veteran of these. Had 2 sinus surgerys, 2 m.r.i.s, an m.r.a., 2 cat scans, probably 2 truckloads of narcotics, 2 e.n.t docs, and then 1 neurologist. Can't believe I've got to live like this. Nobody around me has any idea how bad they get.
Saturday, March 17, 2001 at 21:27:53 (EST)

Hi guys.It was a great feeling stumbling on to this site.I'm currently in my second tour of this hellish CH merry-go-round.I was horrified to see that there are people out there that are chronic sufferers of CH.I am in awe of their strength.My tours generally seem to last only 3-4 weeks at a time,with a remission period of about 18 months. I think the only good thing about this affliction is the feeling you get right after that brilliant,glassy pain fades.Wonderful,blissful...Peace at last.
Erik Botha <>
Empangeni, KZN South Africa
Saturday, March 17, 2001 at 18:03:08 (EST)

Hi all. I'm 29 and I just became a c-head this week. It started tuesday morning in a meeting at work, and I didn't know what was wrong. One hour (and several Advil's) later, the EMS was at work with me and ready to take me to the ER, but the pain started to subside. I had an MRI today to check for aneurysm - no sign of any problem. But if it was aneurysm, none of us would be here anymore! I found this website a couple of days ago, after my doc suggested cluster headaches. The best way I can describe the pain is like a hammer hitting me repeatedly in the temple. I am trying to stay positive about this. I'm really glad I found this site - there really are people who know and understand how it feels. Thanks for being here. David
David F. <>
Wichita, KS USA
Friday, March 16, 2001 at 21:04:42 (EST)

I really got alot of help from this site
Nancy Steffes <>
Hilbert, Wi USA
Friday, March 16, 2001 at 21:04:31 (EST)

Can't tell you my relief to find this website. What I'd really like to do is print it out and hand copies to everybody I know because they just don't seem to get it. (I just got off the phone with my girlfriend - I told her I started getting the headaches again yesterday and she said "really, that sucks, do you want to go to the parade tomorrow"). Well, gee, that all depends on how hard I bang my head into the wall tonight. I seem to get my episodes every 3 years in the spring, always on my right side, always at night when I'm either just relaxing or they wake me from sleep. I've made an appointment with a specialist this time -- he's charging me $400 bucks for my initial consultation but regular doctors don't seem to know much about this. There seems to be so many different treatments -- I hope he will give me some direction. I know that they will only last a couple of months, but I'm terrified anyway. My fiance and I live together now and he has never seem me go through an episode -- I'm actually kinda embarrased. I know I won't get any sleep over the next few months, so I'm goting to be a joy to be around in the office and I'm sure nobody will understand (more peopole who should get copies of this!). I wish everybody the best and I'm glad to find out I'm not alone!
Dawn <B>
Glen Cove, NY USA
Friday, March 16, 2001 at 13:25:24 (EST)

I am so glad I am not alone!
Joyce Twohig <>
Toronto, Ont Canada
Friday, March 16, 2001 at 12:27:40 (EST)

First I would like to thank-you for a very informative web site! Who am I? I am a chronic cluster head. Which started after a head injury 7 years ago. I have been seen for years by one of the nationally known Dr.’s in MI for clusters. I have a 30 lb. file of all the medications that I have tried. With no prevail; I am not taking medications at this time. My cluster cycles are more seasonal and have a lot to do with major weather changes. I have recently relocated to the south, and have found less cluster cycles, because of the difference in weather/season changes. I am very scared to start looking for a new doctor in my area. It’s so hard to have a Dr. understand the extreme pain, and why I hit my head on the floor. :( I find it best to live one day at a time, and concentrate on other things. I will fight to the end!
Tamara <>
The Woodlands, TX USA
Friday, March 16, 2001 at 03:30:43 (EST)

Hello, my name is Becka. I'm 25 yrs. old and have been suffering from migraines since the age of 8. I started suffering with clusters at the age of 20. At first they were eposidal now they're chronic. The sharp dibilitating pains, like an ice pic through your temple. It's even worse to have a migraine at the same time. I haven't been able to hold a job in the past 1 1/2 years. I also see the way that it is affecting my family, my husband, parents, and my two young children watch helplessly as i'm in agany. I miss alot of quality time with my family because i'm sick all the time, i'm really lucky to have a husband who is willing to see me thru this time in my life. We can only hope that one day there will be a cure that works for all of us. To the family members of those who suffer so severely, please try to be understanding although it will prove to be challangeing at times. It also seems as though i've tried every drug known to man and still nothing helps.....Thank you for being supportive......for myself and all the other sufferers. I often think that it would be much easier to die than to make it thru the next day but, I have to think about my family to, please keep that in mind when or if you think about it. All suggestions welcome, will chat with you later....Becka
Rebekah J. Monthony <>
Hickory, NC United States
Thursday, March 15, 2001 at 11:06:40 (EST)

Hi people. I first got clusters when I was 27. Now i'm 42. My latest episode started in October of 2000. It's still going strong; hell it even got worse in the last week. I'm up to 4 migraines a day now. I was using verapamil as the prophylactic and fiorinal as the analgesic. They worked up until a few weeks ago. Now it's just imitrex tablets -which work- without a prophylactic. What used to work: Prophylactic - Amytryptiline, Analgesic - Anaprox(naproxyn) Prophylactic - Verapamil, Analgesic - fiorinal. I saw the "water treatment" web page and immediately decided to give it a try. Mail me dudes. cheers.
richard <>
burlington, on canada
Wednesday, March 14, 2001 at 21:27:34 (EST)

I am 32 years old and have suffered with clusters for only 4 years, i say only it has felt like twenty years to me.E-mails are welcome if anyone wants to talk.
michael coiley <>
charleston, me USA
Wednesday, March 14, 2001 at 20:10:37 (EST)

I'm a Clusterhead and have been for 20 years - the first 5 years were undiagnosed. Face-aches has been my nickname for them and mine start in my top teeth and spread to the rest of that half of my face and head. I went to a GP about ten years ago who put me on a total elimination diet - within 5 days, the bout had stopped. The diet included filtered water as the only fluid I could consume. Maybe the reason is the water. Anyway, it still works for me - a total elimination diet (I'm sure there is information elsewhere on the web on this) no dairy or wheat products, no sugar, tea or coffee, no apples, potatoes, citrus fruits, red meats, not even tap water and some other specifics (beware the caffeine withdrawal in the first couple of days) I am sure that not all of these are causes, but gradual reintroduction is too slow with CH to determine if it has an impact. Has any one else tried it? I am here today because I have just started another bout, and want to know what else there is. The descriptions of my pain by others is unreal. Hi to all from Oz. Graeme
Graeme Emmerson <>
Melbourne, Vic Australia
Wednesday, March 14, 2001 at 19:27:46 (EST)

Bob here, I have lived in the house of PAIN sence about age 16.Just try to imagine explaining a cluster to ANY Dr. that long ago,"28 years".I feel that this is the best source I have found to date for our common foe the "beast". I can tell you some stories about the beast.I don't do live chat because I can't spell worth a darn, but I will be reading the message board.I could take up alot of space here to tell you about myself but thats too much to read I'm 44.
Bob Dixon <>
Tampa, Fl USA
Wednesday, March 14, 2001 at 14:37:12 (EST)

i suffer from clusters, in fact, i had one for lunch today. it's amazing how the descriptions of my behavior follows most other patterns.i've had them since i was a kid thinking i was the only cursed man on earth.
louis giosia <>
bethel, ct USA
Wednesday, March 14, 2001 at 14:18:11 (EST)

Hi, O.K, I'll admit it. I'm a clusterhead. Its nice to say that and know out there somewhere someone understands. I have not had a bout in six years. Thought I was over that phase in my life. The week of Feb 20th the band came out of retirement. Just damn the bad luck. was awoke two nights in a role with screaming pain. Could not believe it was happening again. On the second night I found some xylocaine in the closet left over from six years ago. Not good to take meds that old but who cares. Didn't work anyways. That was on a Thursday. On Friday and Satuday I was pain free. I thought maby it was a very short lived deal. I am not a big drinker of alcohol but I remembered from last round with these Demons that alcohol would trigger one in a heart beat. Fixed one burbon and coke. Tasted real good so fixed another. Never got to finish it. Five hours later the screaming stop. Dont do that!!!!! Its now Mar 14 and still fighting the battle. Spent my birthday, Mar 11, in the E.R. with one that would not let go. Lasted from 4 to 9 in the evening. Been with the docs and now we're playing the guessing games with the meds. So far tried predisone, calan, xylocaine the works. Nothing seems to help. They told me about imitrex but i had a bad heart heart attack in Oct of 2000 and they do want to give to me. I keep telling them it will cure it or kill it. Either way would be a blessing. Just kind of kidding with that. I've had these about four times during my life starting when I was in my 20s. My history shows them staying with me for 4-6 weeks. Knowing that I can continue the fight. If they stay any longer I just don't know. I have already lost my job as a truck driver. I watch my wife sit and cry a river of tears. I am losing my faith in all that is Holy. Like you guys, I just want to give up. But as the saying goes, "What does not kill us will make us stronger". People who don't know us think that we are just big pill popping babys but who cares about them, right? The people who do know us and mean anything truly believe that we must be the strongest humans on Earth. Try and keep peace with your God, whoever you concieve him or her to be and remember, You are a child of the universe and no less than the trees and the stars you have a right to be here. Keep up the good fight my fellow clusterheads. Someday, someway we will find a way to defeat this monster. One other thing. I promised my Son I would ask this question. Does the date, Dec 24 2011, mean anything to any of you guys. Good by for now.
Wednesday, March 14, 2001 at 06:34:37 (EST)

My 18 yr old son just had his first episode this week, emergency room at 6am Sunday gave him Vicodin for the pain, I knew he was in pain, but until I came here to check it out......He connected to this page the minute I brought it up on the screen...he'll probably will be coming back to use this site from now on..... Thanks.
CJ <>
Lakeland, FL USA
Tuesday, March 13, 2001 at 20:48:29 (EST)

Dear Carl D.! There was not one single moment, for hours, after I read your post "Mental Atrophy", when I was not thinking of you, until now. Thomas
Thomas <>
Muenster, Germany
Tuesday, March 13, 2001 at 18:59:42 (EST)

I have suffered with cluster headaches since I was ten years old. I can remember my parents tieing a scarf around my head and pulling it as tight as they could without hurting me, to keep me from pulling my hair out. Going to the ER and getting shots at all times of the night. Waking up from a sound sleep in excrutating pain, screaming for help. At times I go for months without the first sign of one. But when I do have one everthing gets put on hold until it's over. That's usually about three days to four weeks before it finally ends. Even taking my medicine everday that I need I still have to go see my doctor, who puts me on a round of predisone. I have taken that so much I think I'm amune to it. The last two times I had to have a shot, Nubane and phenergan, it did not stop after the first shot. I had to have two each time plus the predisone. Not to mention all the weight I have gained in the past two years. Now I have back problems and having to take epidural injections. And having a headache after that. I have to wonder will I ever be able to enjoy life pain free and if so what can I do to keep it that way? Thank you for listening and caring. I found your site very informative and looking forward to returning. Debbie
Debbie <>
Anderson, SC USA
Tuesday, March 13, 2001 at 02:35:14 (EST)

Thanks for the info and the support. The headaches just began following surgery and I am trying to figure out how to deal with them.
Robert Fisher
Monday, March 12, 2001 at 17:17:40 (EST)

I am 45 and female, have been having CH's since 21. Used to be they would be counted on returning at a precise time of year and last for a counted no. of days till i got a reprieve. I was CH free for 8 years till' two weeks ago when they returned with a vengence. No doctor i ever went to subscribed to the CH theory and it was 'in my head'(no kidding), went thru CAT's, MRI's you name it,, i've had it. The bottom line is my father had them and i watched his agony and now live it. I love this site and the people on here really do understand just what it is when others can only imagine(and no they cannot). I have 5 kids, 3 teens still at home(little stress there) and pray that none of them ever get these demons.
deb e <>
Sidney, Mi. USA
Sunday, March 11, 2001 at 14:22:56 (EST)

well here I sit at my computer crying, FINALLY someone out there understands what I have been going through for the last 2 weeks straight. This was my first experience with these aweful headaches and I am praying that they don't ever return although, as I read on, I feel it is ineveitable. I finally had to diagnose myself because no-one knew what was wrong with me and why none of the "drugs" were working. Thank you for all of this great information and support. I wish I would've found you 2 weeks ago! I am still hoping this doesn't occur again but if (when??) it does I will know where to turn. Thank you.
Suzanne Thompson <>
ON Canada
Sunday, March 11, 2001 at 12:59:31 (EST)

thomas,if your partner cannot understand what you are dealing with and show support then you really cant expect much from your relationship.If your like me all you really want is to be left completely alone while you have a headache,make sure they understand there is little they can do other than show understanding and a little compassion good luck.
Randy Fuchs <>
B.S , Mo USA
Sunday, March 11, 2001 at 10:47:10 (EST)

Hi! This is my first time on this site. I am 45 years old, suffering chronically from Ch for four years with up to ten attacks per 24 hours.During the night there were three attacks on kip 10,lasting from 30 min. to two hours. During daytime the attacks were from kip5 to kip7, lasting 20 min. to 40 min.For almost 3 years no one really believed me and I had no remedy.Then the Cluster was found and I feel better now using oxygen. What I would like to know is if those who suffer from this pain regulary loose their relationships to partners? On the one hand I like to be alone sometimes,on the other hand I feel very lonely. Bye,Thomas
muenster, Germany
Sunday, March 11, 2001 at 08:50:21 (EST)

Hi I'm Jim and have suffered with as Dave puts it the Devil for 15 years. This particular episode started in Jan. 2001 and is still with me. I discovered Imitrex in 1992 while working in France and have used the medication ever since. Prior to the development of this medication I used nothing and simply suffered through the attack. Hopefully this episode will pass and I can get back to a normal life. I hope to hear from some of you fellow sufferers in the near future and I am grateful for this site which allows people who know PAIN to talk about it intellegently. Maybe we can petition GLAXO to reduce their price, however I like Dave's idea Talk to you soon and rest peacefully. Jim
James Youngblood <>
Toms River, NJ USA
Saturday, March 10, 2001 at 20:37:14 (EST)

Hi All: I'm new here like so many of the other ones signing in to the guest book. My first CH was about 2 months ago and on 3/5/01 the Dr at the ERoom told me I was having a CH. I go see a neuro on 3/16/01, I'll keep you posted on his findings. Until I posted to this board on 3/9/01 I was beginning to believe I was going crazy or had all ready gone crazy. After reading several of the messages on the message board and most of the information on the links of this web site. I have learned that most people that have these CH have the same or simular systoms that I have. What a relief it is to learn that I am not going crazy and I have learned in just one days time. Don't set around worrying about what will happen next, it just increased my anxiety level to where I had to turn around and come back home from a trip to the hardware store. Anxiety is fear of the unknown and on this site I got lots of answers to the unknown about CH. Today without problems I made it to 3 stores and have to Thank the great people on this site and the person responsible for this site that I did not turn into a home bound person because of the fear of what was going to happen next. God Bless each of you and I hope each of you have had your last CH. Later Anxiety Dave
Anxiety Dave <>
Loveland, Co USA
Saturday, March 10, 2001 at 18:48:03 (EST)

AMAZING ACCIDENTAL DISCOVERY I have had chronic cluster headaches every day for over 20 years. Ive been through numerous doctors, treatments and medications with no relief.Two weeks ago while in the midst of an attack, I accidentally spilled a bottle of amonia. After a few strong whiffs I noticed that my headache which normally last 40 minutes was gone. The next day when I got my next headache I decided to try the amonia again. To my amazemet after only a couple light sniffs my headache was gone in 30 seconds. I kept using this new trick for a couple weeks and it has worked every time with only one failure in 20 attacks.I figured this wasnt too good for me even though that's of little consequence in the midst of a headache. I saw my doctor today and told him of my discovery and he said it made some sense physiologically and said it really was fairly safe assuming I was using short whiffs. I have spent thousands of dollars and was even hospitalized for a week for a histamine desensitivation and no drugs or treatments have given me any relief until this unbelievable "home remedy" Id be interested in hearing about anyone else who has any success with this. Please feel free to write.
sean harty <>
Friday, March 09, 2001 at 22:33:29 (EST)

Age 51 and suffering for over 30 years. I'm in the middle of a period of attacks now. 3 to 6 a day. Imitrex works very well but you can only take it two times a day. My known triggers are beer, even a few sips, alcohol in general, aged cheese, others but I'm not sure of them as yet. Before I was diagnosed 18 years ago I thought the problem was sinuses. I self medicated with hot brandy. Kinda like putting out a fire with gasoline. Kip scale of 10 or better. As I grow older the problem seems to be getting more intense. I hope that this is a wrong assumtion. Keeping the faith with the knowledge that each attach is only temporary. This has become a kind of mantra to help get through each attack. The sun will come up again.
Larry Stehr <>
St. Bonifacius, MN USA
Friday, March 09, 2001 at 22:22:08 (EST)

I just found this site today, and what a relief to find I'm not the only one on earth with this hoorible condition, I've been in remission for approx 2 years, and dealing with the loss of my mom 2 weeks ago triggered my latest episode. The first few messages I read actually made me cry, I cannot believe so many others suffer as I do, my sympathy goes out to all of you.
Chris Burchell <>
Wayne, NJ USA
Friday, March 09, 2001 at 21:54:07 (EST)

Aloha from Hawaii. I have suffered with CHs for about ten years now. I just found this site and it is great to know we are not alone.
Steven Hartley <>
Honolulu, Hi USA
Friday, March 09, 2001 at 20:55:36 (EST)

Have discovered relief!
Stan Hayes <>
Poway, Ca. USA
Friday, March 09, 2001 at 20:26:33 (EST)

Hi, was diagnosed with cluster 12 years ago although all my life that I can remember getting them once a year for about six weeks. As a boy I found a way to ease the pain. Believe it or not it does help as weird as it sounds. I drop a hand towel in boiling water and when it is bearable enough to hold against my eye and head the scalding pain sort of takes away from the searing cluster pain. I am not suggesting you burn yourself but dealing with the heat seems for me a better option than the cluster. I know it sounds crazy but I believe we all have a "routine" in dealing with the pain and although it is by no means a cure, it certainly helps. I am totally convinced that there is no medication that stops the pain as the headaches go away after 20 minutes to half an hour, whether I take something or not
Howard Abroms <>
New York, ny USA
Friday, March 09, 2001 at 15:47:07 (EST)

I'm 20 years old and I got my first migraine on my 16th birthday. I have gotten them off and on since then - experiencing one just two days ago. They seem to be happening more and more frequently (with each episode it lasts longer) and I'm a little afraid of what's to come. What is the difference between cluster and migraine? I had never heard of cluster before this site. Also, if anyone has any information on another type of headache that I experience. I get these sudden excruciating, sharp pains that shoot from just above my left temple down below and behind my ear. My migraines are always on the right side therefore I have no idea what to call these headaches. It typically only lasts a few seconds, repeating a few times within a 1-5 minute time frame. The pains are so sudden and so sharp that it causes me to suddenly jerk my head to the left and instantly reach for the pain. Any info would be helpful, the doctor's seem to be baffled. Please Email Me!!!
Jennie <>
Thursday, March 08, 2001 at 21:09:37 (EST)

as a twenty-plus year clusterhead-what a relief to see this site. for twenty years i thought and was told that i suffered from migraines but no migraine sufferers experienced the same afflictions as me. i tried to e-mail bill finnigan whose letter i found in here. he claims to know what triggers these things but i cannot locate his e-mail address. it is listed as wfinn49611. bill, if you are out there could you e-mail me with your suggestions? or anybody else.i cannot pinpoint any triggers as the attacks seem to be completely spontaneous.
greg kovacs <>
queen charlotte, British Columbia canada
Thursday, March 08, 2001 at 17:32:48 (EST)

I have suffered from CHs for over 10 years. Mine show up about every 2 years and last for about 4 months. Normally, about 1 CH per day and about every 3 day I will have 2 CHs. CHs last about 2 hours. I finally found out about Imitrex (20mg nasal spray) 4 years ago and for me it has been a wonder drug if I catch the CH early. Oxygen also provides some relief. The only problem with Imitrex is having enough on hand. My medical insurance provider gives out only 2 units per co-pay and the Doc only writes the Rx for a total of 6. It am exicted about finding this website because no one, outside of wife, and it took her several years, seems to understand what CHs can to do a person. I was in an accident several years and broke my back in 3 different places - the pain associated with that accident is nothing, ..... let me say that again .... nothing, when compared to the pain of CH. God help us all!
Randall Patterson <>
King, NC USA
Thursday, March 08, 2001 at 17:07:03 (EST)

Hello from Spain. I'm 11 years suffered episodic CH. It is very nice to have contact with people that suffers like me. I've nerve meet anyone and I've been allways alone in this. Thanks very much for being there. Carmen
Carmen Menor de las Casas <>
Madrid, Spain
Thursday, March 08, 2001 at 10:54:35 (EST)

I was an eposidic sufferer until a month ago. Since then it's been 5-7 attacks a day. It's nice to have a site like this and know I'm not alone.
Matt Boyce <>
St. Louis, MO USA
Thursday, March 08, 2001 at 09:06:11 (EST)

Hey there fellow cluster sufferers. My Imitrex just kicked in and I decided to see if I could find any info on cluster headaches on the web. What a great sight! One thing I've never really gotten over is the incredible aloneness I feel when these things hit. Now I know there is a place to go, where people actually get it. I have a few female freinds who are migraine sufferers, but when I hear them talk about lying in a dark room to feel better I just didnt get it!
Karen Ruchkin <>
Baltimore, MD USA
Thursday, March 08, 2001 at 08:15:04 (EST)

i'm a 15 year cluster sufferer. this winter, for the 1st time i have had no clusters. I have been using LIGHT Therapy since late october. It is now 3/8/01, and i've been headache free for the longest period in 15 years. I am 71.
Ray Dubois <>
Dover, NH USA
Wednesday, March 07, 2001 at 16:21:32 (EST)

Hey there fellow Cluster Headache sufferers. I just discovered this site yesterday, what a relief. I am realatively new to the "Devil's" little game, having had my first CH about 4 years (I am 24 now). After reading many of these archives I almost feel as if I am lucky, only suffering with bouts that last on and off for a period of around 2 weeks, once or twice a year. Most often they seem to be triggered by very stressful moments in my life. My miracle drug was Compazine for a while, until it failed me misserably the other night. Now I am moving onto Imitrex like a lot of you. I brought a copy of many of these stories to my Doctor today to educate him and prove to him how much these CH's really hurt. I also convinced him to give me a few pain killers just in case my medicine fails me again. I consider myself to be pretty thick skinned and able to tough out just about anything, but these CH's bring me to my knees whimpering like a baby. I am very encouraged from reading many of these stories, I could not imagine having felt alone for periods as long as some of you folks. I used to think god was retaliating against me (I have begged him for mercy many a times), but now I realize we are all good people and only have the "Devil" to blame. Stay strong people, I will pray for us all.
Jason Bratzke <>
Chicago, IL USA
Tuesday, March 06, 2001 at 21:13:53 (EST)

I've suffered with cluster headaches for approximately 30 years. I'm now 52 and they started in my early 20's. Very serious depression associated with the latest attacks, as all that I had read led me to believe that the clusters would end around 50 years of age. It had been perhaps 1 1/2 years since my last "headache season", and I was firmly convinced that they were gone--when last week they returned! Those of you who suffer with these headaches can imagine the disappointment I'm describing. What a godsend the Imitrex injections have been--I can barely remember what it was like 5 or 6 years ago, prior to the shots, probably because I've buried those wonderful memories. Thanks for letting me "vent" to other sufferers, and if my 30+ years of dealing with this problem can benefit you in any way, please don't hesitate to contact me. Aloha from Maui!
Bernard Clark <>
Kihei, Hi USA
Tuesday, March 06, 2001 at 13:38:44 (EST)

kim cronin <corona717171>
npr, fl USA
Tuesday, March 06, 2001 at 12:43:52 (EST)

i have never done this before. i am not sure if this is where i am supposed to write this. i am trying to find out if other people get dizzy with cluster headaches . it is never listed as one of the symptoms.
kathleen lombardo <bellaluna82864>
franklin square, ny USA
Tuesday, March 06, 2001 at 11:48:32 (EST)

this is the most information i have ever been able to gather about cluster headaches. I have had clusters for six years. My first episode I would have sworn I was going to die because somthing in my head wasnt at all right you cant have that much pain without something being terribly wrong. So after 14 days in the hospital 4 sinus surgeries so many med's I lost count and still not a diagnosis of what was happening to me. 4months later I was in remission.The second bout hit about 18 mo later this time the Dr said clusters and high flow oxygen. for me it is pain management but it takes longer than just 15 min. I breath high flow 10-15lts for 10-15 min until the worst pain is subsided and then backoff to 4-6 lts til I am sure the attack is gone. otherwise it just returns and just as intence within 10 min. would love to corospond with others. just love to know there are so many others out there.
Burr Oak, kansas USA
Tuesday, March 06, 2001 at 01:52:40 (EST)

Hello ClusterHeads! Having episodic CH for over 20 years, I've never met another sufferer and that makes this a truely comforting website. Conditions have improved for me over the years with the use of oxygen/imitrex and remission periods increasing from 9-22 mo. Just the same, individual attacks are more frequent (3-6 daily) and severe, so that each episode seems equally horrific. Being a professional and a single parent makes it even more arduous. Wish there was something to end our suffering. Even a little sympathy would be nice. Glad there is a site like this!
Doug Vetter <>
Cheyenne, WY USA
Monday, March 05, 2001 at 23:28:08 (EST)

Hello, CH sufferers, I have been CH free for 16 months. But today of all days with a bad snow storm threating the northeast I woke up to a CH. I didn't no what to do, stay home because of the snow or my CH. So I took 2 fiornal with codeine laid back down for 20 mins, got up and went to work (the pain was still at its worst). I have been suffering since I was 16 years old, I turned 40 this year and this has been the longest period I have been CH free. I don't know what caused the CH, I have had 2 since 6:45 am. The last being 6:00 pm. I made an entry 16 mos ago, i haven't written since, but today I felt that I needed to be around other people that are going through the same thing that I am. There are not many people in my life that understand what I'm going through. Okay enough. Thanks for listening. Sylvia
Sylvia <>
Newark, NJ USA
Monday, March 05, 2001 at 19:33:16 (EST)

Unlike most sufferers I am a woman. I'm 17 years old and I have suffered with them for about 4 years now. I have been on so many different meds, some of my friends think I'm a drugie. I have also had a CT scan and that revliled nothing. I thought that all hope was lost then I meet a chiropractor. He changed my life. I still get them but not as bad and not all the time, like before. I go once a week and if I miss a week I will get another bad headache. So anyone reading this I would look into a chiropractor around where you live. It just might change your life as it did for me.
Amanda <>
Mars Hill, ME USA
Monday, March 05, 2001 at 17:34:29 (EST)

I've had daily clusters daily for 19 months, usually betewen 5 and 10 PM. The only medication that works is Cafergot Suppositories to kill the pain. Could chocolate trigger the attacks?
Monday, March 05, 2001 at 16:13:53 (EST)

Man! Story after story all repeating the same one I can tell. It's still amazing to me that to so many MDs we're only out for the dope. I've been dancing with the beast since I was 18 - nearly 30 years now. My own cycles pretty much echo every other episodic type in here... 4 to 8 weeks of hell with at least one week of begging to die followed by 9 to 24 months of peace and normality. I have been so misdiagnosed over the years that I have lost all faith and credulity with the "normal" medical profession. It sure is nice to know that others are doing there own dances and that my own headbanging isn't just some crazy perversion. Thanks, folks, for putting this site up.
Keith LeBrun <>
Pleasant Hill, CA USA
Monday, March 05, 2001 at 00:31:49 (EST)

i can not say that this advice will work for every one but i think it can be helpful for some because someware there is a common thread to all this misery.Being a ch victom for thirty years, it was in jan 1991 when i went into an eight month cycle. in august of that year i watched channel seven news about a report from a famous england hospital it claimed that the herb feverfew can be benifical for migrain suffers. be mindful that i could not work for eight months because of the increadable pain of ch.(4 to 8 times a day). it was on a thursday when i heard the report. i took the feverfew for the three days and was completely amaised that i was able to return to work on monday. the feverfew had broken my cycle. please do not get up any false hopes, a cluster cycle is very difficult to end, they seem to run their own cause. shortly after this incident i discovered that food allergy was the trigger for my ch cycles. in my case these foods are shell fish,cheese,wine and pork. here are some thoughts to consider.....why is it so difficult to detect these culperts? perhaps because we are able to tolerate some of these allergens, but when it comes to a large amount or a combination of the of our allergens, it can trigger the cycle. i realy don't know, just is what i recommend and what works for me 1.learn to identify the very early stages of the cycle, for me it is fatague nassua, then the increadable pain. when i get these early symthums, i take the feverfew this is what stops the cycle for me every time,with fail, for the past ten years.....2.get an allergy test and avoid any allergen at all cost.( it may be interesting to know how many of us ch victoms have food allergies and what they are).....3. stay with your doctor and note: do not become discurraged if the feverfew dose not break your cycle after you are in a full blown cycle. after the cycle is over and if a new one beguines, that might be the time that the feverfew will work, if you take it in the very early sign of the ch. i do and it works for me every time....good luck and god bless
bill <wfinn49611>
kissimmee, fl USA
Sunday, March 04, 2001 at 18:30:33 (EST)

I have suffered from CH for over 20 years. I have found nothing that stops the pain. It is a 10 on the kip scale every headache, every time.I had 3 fingers ripped from my left hand in an oilfield accident and the pain was not as severe as my headaches. God please help us who suffer.
David Hudye <>
Taber, AB Canada
Saturday, March 03, 2001 at 23:14:32 (EST)

I can't believe I've found this website. I've been a clusterhead for 3 years now, got my first one on my 39th birthday, thought I had a brain tumor exploding in my head. It really scared me and my wife until the CT scan came back negative. Then diagnosed with migraines and treated wrong for about a year by a real grouchy, cold, neurologist. Finally found the right neurologist and the right diagnosis. I've felt so alone until my wife typed in cluster headaches just on a whim and all this information came up, what a blessing! I really feel knowledge is power and I'm learning alot reading all the information provided. Nights are the worse for me too because I can't catch them in the beginning. Needless to say my wife has hid our gun because sometimes I just feel like pulling the trigger into my temple. I'm on a Prednisone burst and taper right now as I'm going through another cycle, didn't have any for almost 3 weeks and got kind of cocky, thinking maybe I was cured! ha ha, yeh right! A guy can hope can't he? I use to fret when I didn't have one about when I would get one but my wife encourages me to thank god for each moment that I am not in pain and live that moment to the fullest and that is what we do in our life to get through, just soak in every wonderful pain free minute and truly thank god for it. I am truly thankful for this website. mike
Mike Crow <>
Elk Point, SD USA
Saturday, March 03, 2001 at 19:18:55 (EST)

mine started in '79.i was 25.i thought i was losing my mind. was admitted into the hospital for a week.catscans,tests, etc. the doctors had no clue. quit my job, moved to hawaii to be a surfbum. 2 years later they started again, this time the doctor i saw knew about them. they had a name, Cluster Headaches!!! i felt like that was half the battle, i was not alone. and oxygen helped me from going totally bonkers. i got them every 2 years till '91. they were gone for 10 years, thank god. untill now. they came back a week ago with a vingeance. every night from abpout 10pm to 3am. i couldnt believe they were back. but i got my tank of oxygen by my bedside now and i will get thru this. it is comforting in someway knowing others suffer too. i feel for them, for you, but we are not alone. that which does not kill us makes us stronger. i still surf but im not a bum. raising and awesome little boy on my own and living at the beach in florida again. counting my blessings everyday. god bless you all and dont let those o2 tanks get low. aloha, matt
matt crawford <>
daytona beach, fl USA
Saturday, March 03, 2001 at 10:54:41 (EST)

I'm not sure even how to begin this- I received information about your web site from my sister yesterday and I log on first thing this morning while the affects of the shot of imitrex was still taking hold. As I began to read the information and the personal accounts of others "out there" I broke down into tears. For the first time in the past 17 years I'm not alone. Even writing this now I'm so overwhelmed that there is someone else who I can finally talk to who will understand what I'm going through. I am an annual sufferer. My "season" as we, my family and I have come to call it, comes at different times of the year but usually last 6-10 weeks. This "season" began mid-January and is still in full swing. (well on the kip scale, I'm finally coming to a #7-6) I have been able to persuade the my doctor, the pharmacy and my insurance company that I need at least two injections of imitrex and at least two 50mg pills a day. It took some doing, but for my pain this has been a God-send. It takes the pain away for at least 10-12 hours. But they return in the middle of the night and within an half hour apon waking in the morning or in the afternoon, usually 4pm. It took me so long for a doctor to agree that I have clusters. I am female and we are not "supposed to have these" surely it is a migraine. Well, we fellow sufferers honestly have our stories right because our symptoms are diffinetly cluster. Thank you for taking the time to find & publish all the information. I have have so many questions and my answers so far have been my own theories. I don't want to over med myself and I want so badly to stop the "season" before it shatters another six to ten weeks of my life. As soon as I send this to you I'm calling my mom and tell her about this leap of great news. You may not be able to help me in the middle of the night, but you have certainly given me more hope and a way to help those around me finally understand why and what is happening to me. Thank you. Judy
Judy Petz-LiGreci <>
Tortola, British Virgin Islands
Saturday, March 03, 2001 at 09:54:53 (EST)

Please don`t close the sites Elaine.Its too importent to all of us. Svenn
Svenn <>
Oslo, Norway
Thursday, March 01, 2001 at 17:51:35 (EST)

Hello all, am currently in the midst of an attack. Am 47 yrs old, had my first attack at 17. Usually, one per year. Never heard the term cluster headache untill 1983. Know very well it's like to suffer year after year without knowin the cause or the reason. Like most of you I have tried many supposed preventatives. Know very well that sinking feeling, walking out of the doctors office with some new miracle drug and no narcotics for back-up in case of failure. I am not opposed to trying new possibilities, no one wants to find a preventative more than us, right? Meanwhile, we have to try to remain alive and functioning! My personal experience has only found one successful treatment. It came from a doctor [now deceased] in Spokane Wa. just before I moved to Alaska in 1981. The logic was simple and effective. He told me that because the ha's attacked in series for a finite time period it would be best not to let the series establish itself. Most of us know that narcotics have a limited effectiveness for a series that lasts [in my case] 5 to 6 weeks. I have found that if I start with strong narcotics, they won't be effective for more than 3 weeks. I usually get through the first week or two with aspirin and an ice pack. Then go to the doc's for narcotics. Even then, they don't work for that last week or two when the ha's are at their worst. Anyway, that one doctor sent me home with a large quantity of narcotics. He told me not to chase the pain [taking after ha has started], but to take them regularly to prevent the ha's. It worked wonderfully. The series never got started, after about 3 weeks I stopped the medication. and had another year without a bout. Unfortunately, there has only been one other time that I have found a doctor who would allow this treatment. Either they don't believe you [there is no way to medical way to prove ha's], or they are worried about the medical boards, dea, drug czar etc. It is a pretty sad day when doctors have to let people suffer because of political pressure. Current policy is that it is better to let some patients suffer needlessly rather than have some patients get drugs they don't need. I don't blame the doctors. If they don't comply they could lose their medical license. I wish you all relief and good luck. Tom Lowerison
Thomas S. Lowerison <>
Spokane, Wa USA
Thursday, March 01, 2001 at 17:49:18 (EST)




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