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 September 1999. Thank you for your continued active involvement in this site and keep those guestbook entries coming!


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2 1/2 years the devil took a vacation then on the eve of moving into a new apartment, a new job, that ugly bastard reared is vile head.My mental state spiralled and my whole peaceful existance was ripped to shreds. The effective med last bout was imitrex,but the doctors at the local VA Med Ctr don't want to prescribe it now. My consult to neuorology will that 3 months before an appt.I keep getting a generous script of 2 doses of imetrex a month and then have to travel 35 miles one way to secure other pain relief meds. One of my collegues is an herbalist and suggested feverfew. I will start experimenting with the feverfew and let everyone know. If anyone has any input please let me know especially dosage info. Thanks, Mike
mike <>
phx, az USA
Thursday, September 30, 1999 at 23:26:39 (EDT)

I wrote last year and discussed the symptoms of my clusters, the horrible pain, the runny nose, the watery eye, all of this on the right side of my head. Last year my old PCP insisted the only remedy for me was to use the nasal drops at the onset of the headache. These seemed to work sometimes when I could catch them, but obviously I could never catch the 3 am wake up episodes. This summer I began seeing another PCP and she put me on calcium channel blockers. I started taking the one pill daily back on September 1st and to this day I have not had a single cluster headache! This is my annual period of the year when I get the headaches (9/1-mid Oct). Perhaps I am jumping the gun, but I believe these pills are what have allowed me to be headache-free so far this fall. I would encourage anyone who hasn't tried them to ask there doctor about them because they have helped me tremendously! The only side effect they have caused for me is being a little more tired than normal, but certainly not enough to where I can't function. Basically, I used to be a night-owl but now by 11 PM I am ready for bed! Maybe these are what I have needed all along; I'm keeping my fingers crossed that I get through my episode period (about two weeks to go) without getting a cluster. I have suffered for a long long time.
Mike Brown <>
Rensselaer, NY USA
Thursday, September 30, 1999 at 13:30:42 (EDT)

I just recently found this site. This is really fantastic, thanks everyone for sharing. I'm 51 and have had CH for about 28 years. Compared to some that I've read about on these pages, I think mine are "milder." I can't even imagine having chronic CH and never having a break. I'm near the end of a cycle right now and this has been a relatively mild cycle. Also about 16 months since the last one, that's longer than usual. I have been told that it is possible to "out-grow" these "bad-boys." My neurologist told me yesterday it's possible, but usually more common for migraine suffers. This is my first year to use immitrex or verapimil. I am using them both (about a week and a half now) and I believe they're helping. It may be hard to believe but I've suffered almost 28 years and just now going to a neurologist. There sure is a lot of ignorance about CH out there amongst family practice physicians. Mine started after I suffered whiplash in a car accident and after that, I assumed they were associated with the injury and all the doctors just said, "they're like a football injury, you just got to live with them." I used a lot of fiorinal with codene over the years...and that was my main way of battling them, other than pacing the floor, crying, standing in the know the routine. I never beat my head against the floor, but I have seen the times when if I couldn't have gone to the ER and get a demarol shot, I would have probably gone to the gun closet. My neurologist told me that the whiplash may have "triggered" the beginning for me but I probably would have started them sometime along the way even without the accident. I have tried some alternative forms of therapy and some have given me relief. My chiropractor gave me this treatment. Three times per day, using a moist heating pad across a small "neckroll" pillow, lay with the pad under the small of your neck, 10 minutes, and then place an ice pack (one of those frozen jelly filled types) under the neck for 20 minutes. Then at night when the monster begins, get your heating pad out and do the 10/20 minute rotation. If one rotation doesn't stop it, do it again, and again if necessary. The first time I tried it, it was near the end of the cycle, and it took about 1 hr./10 minutes and the headache melted away. The next night, it only took about 15 minutes. And this was the end of that cycle. I believe that it helped stop the cycle, maybe a coincident, who knows. Note, my chiropractor says to always end with the cold cycle. When the headaches are level 5 or 6, maybe even 7, the therapy is still pretty effective for me, but not when they get to 8, 9 or 10. And since the first time, the therapy has not ended the cycle. The other night when the immetrix was taking to long to help the pain, I got out up and took a couple of fiorinals and drank a large amount of water. The headache vanished almost immediately. I know it was not the fiorinal taking effect that fast and suspect it may have been the water.....I've been drinking a lot of water since then. Nothing else creative to share, sorry. It really is good to read about some of the others who also walk the floor. I guess it's true, misery loves company. May God bless you with a good nights sleep.
Sam English <>
Piedmont, MO USA
Wednesday, September 29, 1999 at 21:07:13 (EDT)

I cried when I found this site. I felt so alone in my pain. I am glad to know that I am not the only one to bang my head in agony.
Keith Engel <>
Tulsa, OK USA
Wednesday, September 29, 1999 at 12:58:00 (EDT)

I suffer cluster headaches since 1972. At that time, crisis were 20mn long. They are now 6 hrs long! Fortunately, I have a shot of Imiject (Imitrex in the US) with me at all times! In 4mn, the pain is gone!
Claude Amar <>
Paris, France
Wednesday, September 29, 1999 at 04:15:04 (EDT)

My name is Bill and I suffer from cluster attacks. I grew up with ordinary migranes but they mutated into clusters in 1990. At that time the pain-depression-stress cycle lead me to a probable minor nervous breakdown. My bouts last 1-2 months and cycle between 6 and 18 months, approximately. I have started several headache journals, which seem to help me get out of the denial over how bad it really is. I can live through short bouts (several days) but when it drags into the 6th+ week my life starts to implode. I find it hard to stop thinking about the movie "PI". That person knows about CH, but I don't like the cure: Self-inflicted Lobotomy, although I certainly understand the desparation that leads to that action. The suicide-treatment group probably understands also, but I don't see many postings from those who have used this method. I hear of cavemen skulls with holes which are believed self-inflicted for headache relief. This isn't a new disease. Not to joke, but has anyone tried alternative medicine? I have found some relief in chiropractic and massage therapy to reduce the stress component of the bout-cycle. I am almost desparate enough to try voodoo (maybe its an old girlfriend with stickpins and a straw doll?) or explore for alien implants (although I don't remember being abducted). One of my friends, who also suffers from clusters, says that if his brain didn't need him for transportation it would have killed him long ago. I feel like my brain is rejecting my skull. Anyone tried a brain transplant? Gotta hang in there, life between bouts is just too good. But man, it really SUCKS in the midst of a significant bout. Would like to correspond.
Bill McCuistion <>
Houston, TX USA
Wednesday, September 29, 1999 at 01:39:57 (EDT)

It is good to see a site that allows fellow CH sufferers a place to compare notes or just see how the rest of us are doing. Thank you for setting this site up. My own clusters started one beautiful summer afternoon after work and have come and gone on no particular schedule for the past 12 years. Many different treatments have worked briefly, none with permanent affect. My own experience seems to indicate that the demon is clever and changes to overcome whatever treatment I try. My current cluster is by far the longest one - having started back in April (6 months ago). Beginning to think I met get chronic if this keeps up. I did get a week or so off back in June from Prednisone, but my doc doesn't want me using it again. She means well. Since I've tried the stearoids, accupuncture (initial success for pain reduction got them down to Kip-scale 8), claratin, chiropractor, lots of pseudoephedrin, tons of tylenol and aspirin and excedrin, etc. with only temporary relief, I am about to try depakote, after months of hoping the CH would quit and just using over the counter pain meds to make life liveable. Tried Neurontin back in July - that made the symptoms worse (in my case any vaso-dilater is trouble). The only other CH sufferer I know is a fellow Eugene, OR resident named Steve. I would love to hear from anyone having success with some treatment.
Joseph Williams <>
Eugene, OR USA
Wednesday, September 29, 1999 at 00:49:56 (EDT)

After 6 years of almost continous Clusters (remisions of lessthan a month), they disappeared for lmost 2 years. Last Friday evening, the demon annouced "I'm back". I had hoped there had been some advancement in treatment over the past 2 years, but alas it appears this is not the case. Now I again fear the night and pray for it's end.
David Curtis <>
Crofton, MD USA
Tuesday, September 28, 1999 at 23:06:59 (EDT)

Great site! I have had ch's for 20yrs and have tried most everything ive been reading.I tare ercaf when the pain starts and usually it gets better in less than a half hr. also try and spoon anything hot coffe tea etc, have a cpap machine to sleep with and that has helped for the last 9mo but they came back this mo :( so here we go again I guess???
lawrence,, ks USA
Tuesday, September 28, 1999 at 21:32:09 (EDT)

I just posted this same note on the message board, but sorry, I'm feeling a little lazy today! I've had clusters since I was 19 (32 now), and almost as bad as the pain itself is the lack of understanding about the beasties, even from many doctors. I can't tell you how many times I've almost lost it when someone said "Oh, yeah, I know how you feel - I had a really bad headache the other day. I was really stressed out at work". Might as well say "Dude, I know how it must've been for you to have your arms torn off by that threshing machine; I got a paper cut last week". At any rate, it's a tremendous comfort to have this web-page. I look forward to learning more about the headaches and the folks who suffer from them. I'm generally shy, but I can already tell I'd like to shake hands with & hug anybody who cares enough to post here. I'll do my best to help whenever I can, too. So thanks for being here.
Mike <>
E. Lansing, MI USA
Tuesday, September 28, 1999 at 15:46:30 (EDT)

I made through this Cluster! They are gone for now. It has been 10 days I have been pain free. I have an appointment to see another nuerologist tomorrow. That doesn't do me any good!
Denice <>
Belmont, MA USA
Tuesday, September 28, 1999 at 14:19:21 (EDT)

Thank you for providing a lifeline to cluster headache sufferers. It's nice to know we're not alone and going crazy.
Bobbie P.
AB Canada
Tuesday, September 28, 1999 at 13:48:08 (EDT)

First of all I would like to mention "Thank's to D.J. for this web. site sorry that he to is a suffer, but at least someone was looking out for the rest of us. Guess I better sign this guess book, but I consider it as the family list ,I would be more then happy to say, I have family I never knew thanks to D.J..I have had these attacts for about twenty years ,I have musle tention headachs which sends clusters into affect also.This problem like the rest of you are looking to seek pain free days,If it was not for my husband seeking other avenues when Docs. are looking at us like your crasy if I am giving you any more drugs then your on now, found this site and much to our supprise there are so many of us out there having to deal with the same problems, so its been great to be more educated then the docs.when we go in for a check up to ask them no disrespect to you Doc. but have you heard of this med. thanks to all of you on this site.I just feel sorry to the ones without a computor to look for more info. themselves.Again Thanks to all of you I have found different meds. that seem to be working at this time.Also a place where suffers and family members can go to vent there feelings without someone looking at you like your crasy,or attention seekers,oh,oh petiful you looks,ects.... Getting carried away again, sorry but others that have not experienced this would not understand these emotions we all lock up inside of us.Here, Here to the one who finds a cure to the pain one cannot know unless they themselves have felt the pain like ours.Looking Forward To Pain Free Days,LYG.
Northern, Ca. USA
Tuesday, September 28, 1999 at 13:26:56 (EDT)

medication available for ch.I have only one option left.Surgery.If anyone has recieved this treatment I would really like to hear from you.Michael
Michael Vater <>
Nasville, TN USA
Tuesday, September 28, 1999 at 00:06:21 (EDT)

It's been almost nine years & no relief. Nothing has helped to prevent the attacks. Can't take Imitrex anymore (heart problems), the only thing that seems to help is a hot shower and a cold bathroom floor. I would have never thought my life would turn out like this. I am living in constant fear of the pain.
Bill Stridiron <>
Livonia, MI USA
Monday, September 27, 1999 at 16:39:12 (EDT)

Great Web-Site! Does anyone else find that sudden changes in air pressure (like before and during a thunder storm) make their C worse? I've been having attacks for 12 years now and have had various treatments but the treatment I have now is 125 mg of Lithium twice a day and one or 2 methysergyde tablets (1mg) three times a day - it doesn't get ride of them completely but it certainly helps to reduce the overall pain. I'm now 4 weeks into a cluster and have only had about 3 "unbearable" attacks. Please feel free to e-mail me - particuarly if you live in the UK.
Mark Gillman <>
Liss, Hants England
Monday, September 27, 1999 at 09:17:49 (EDT)

Glad I found this site. Is there anybody else in South Africa that suffers from CH? I'm suicidal right now and just can't take it no more. I really feel ALONE in South Africa. Nobody seems to understand. My husband thinks I'm a freak and making jokes like "Are you babelaas AGAIN" my kids are horified and I climb into the fridge for relief. The chemist thinks I'm a druggie and my parents thinks I'm just "stupid" and wanting attention (For goodnessake I'm 43, I don't need my parents attention anymore). My hips feel and look like a needle cussion from all the injections, my hot water bottle is working overtime, my sleeptime havn't seen me for ages and thinks I'm on permanent leave, my car misses me (to nauses and in pain to drive), my cleaning lady is crying everytime she sees me and the devilish crocodile like pain in my head is having a ball of a time. (This develish crocodile is having my brains for breakfast, lunch and supper). At the moment I'm using Dihydergot, Pethide and Meticorten (Cortisone) and 8 out of 10 times not working. On the odd occasion, if I'm lucky the Dihydergot seems to help in a prevantative manner. But boy o boy, if that fails - then I'm in for the devils own brooch that only he can cough up. Then its time to get into the fridge with a hot water bottle on the head, pray and once again pray, lock up my gun and wait. Sometimes I really scream as loud as I can and growl like a hunted lion. I'm fortunate to live on a farm where nobody can hear me - but unfortunate if the pain goes to the Kid scale of more than 10 - no emergency room closeby. I just wish that the lucky ones out there who's never suffered pain like this can understand that we are not showing off. Has anybody who suffers from CH also feels that their hair actually hurts? I can't touch my hair. And can anybody give a remedy for the nausea? I've tried the ones over the counter - but it makes me drowsy and if that happens - here comes MR DEVIL CROCODILE. To all you other sufferers world wide - thanks for listening.
Linda Hyman <>
Monday, September 27, 1999 at 07:52:18 (EDT)

I have been dealing with this problem off and on for many years. I been to many different doctors.since the problem comes in cycles when it would stop I thought it was gone then a year later it was back and i was off to another doctor.starting all over again this went on for years..I finally went to a nuroligest and he put me on predisone.the day i started taking it my clusters were gone.I finished my perscription and was pain free for 2 years (yahoo)..But then out of nowhere they were back. so I went back to the doctor and he put me on the same treatment, and again that day the cluster stopped,but I was having a longer cycle because the day after I took my last pill it was back.Im still taking the predisone and feel fine waiting for this cycle to end because I don't like to depend on taking pills everyday but with the pain that comes with these clusters I'll live with taking the pills till there gone.. I'd just to say If you have this problem this is the place to get the info you need to have a pain free life . you should'nt have to live with the pain of a cluster headache. Good luck to all of you. I understand the pain I felt in 1st hand...(I't the pits) Mike
Mike Hammond <>
oxford, ct USA
Sunday, September 26, 1999 at 21:50:44 (EDT)

Im suffering from cluster and my doctors are prescribing me drugs that are not helping me at all. If I dont drink alcohol i dont get the big pain, but I have at all times this mind confusion, pressure in the eyes, difficulty to concetrate etc... plese help me
Salvatore Curreri <>
San Juan, P.R Puerto Rico
Sunday, September 26, 1999 at 20:15:49 (EDT)

Sorry I misspelled the drops my husband puts in his nose. It should have Lidocaine. 2 to 3 drops in the affected side and the pains is gone in 5 minutes. When he first went to the doctor in 1988 the doctor had an intervascular dobbler test done. This is an ultrasound of the various blood vessels in the face. They had my husband hyperventalate to simulate a CH. It showed the blood vessels in his face squeezed down to all most nothing and stayed that way for at least a minute before very slowly going back to normal. During that minute the doctor doing the test kept asking if my husband was alright. Said he hadn't seen anything like it. If you can't get relief and haven't tried the 4% Lidocaine solution as nose drops - TRY IT!!! It has been a life saver. This doctor said he has one patient commit suicide because of CH. This was before some of the newer medicines have been found. We thank God that we have found a doctor that can tell us more about CH than we could remember to tell him. He even gave us his home phone number incase we need him on weekends, at night or on holidays. Good Luck everyone.
Hull, IL USA
Saturday, September 25, 1999 at 18:19:39 (EDT)

Have suffered terribly, haven't tried all that I just read about but a mention of something that gives me the quickest relief, and that's......Mineral Ice...Haven't studied what chemicals are actually in it yet but when an attack comes on I spread mineral ice on my neck and on the temple area as well as over the right eye. It heats up your areas applied and sometimes with a little luck it draws the pain out and/or relieves quicker than any other medication or idea I've come up with and I've been to the point of tying a belt around my head and tightening. Just a suggestion. Will keep monitoring this site since I don't feel alone anymore. One's coming on now, have to head for jar of mineral ice, talk with everyone later, take care, Terry
Terry <>
Wiley ford, wv USA
Saturday, September 25, 1999 at 08:57:44 (EDT)

For 21 years I thought I was alone. So happy I found this site!
Kathy Feltus <>
Toronto, On Canada
Friday, September 24, 1999 at 23:32:15 (EDT)

I have been playing with the devil for 30 years.Pain Level 8 to 10. I have one rule,never never give up.
Reg Bailey <>
Toronto, on Canada
Friday, September 24, 1999 at 18:50:21 (EDT)

Hello verybody! I wrote in this guestbook befoor. ( to find quickly; write 'SCHMIDT' after the CONTROL/F command). ```````` I should like to let you know that I have a great help of PROPANOLOL ( BethaBlockers) Ask your docter about it! best regards from Holland; Frans Schmidt
Frans Schmidt <>
Den Haag, USA
Friday, September 24, 1999 at 16:22:39 (EDT)

I've suffered from clusters for years, but they were somewhat manageable till this year, when I started getting the nightly screamers in June. I searched out this site in pain and desparation, and was greatly comforted knowing that I'm not alone! I also got lots of great info on Oxygen from the message board. The O2 works great for me by the way. . .Thanks everyone!
Brian Steenstry <>
Lake Geneva, WI USA
Friday, September 24, 1999 at 12:42:04 (EDT)

Well, I haven't had CH since last Saturday night and here it is another weekend. I hope that I can make it through this weekend without one. I have a wedding to go to and I am fearing that I am not going to be able to enjoy myself knowing that I could get one and have to leave It seems that the pattern of CH has changed for me. I only get them on the weekends and I get them during the day and at night. I am hoping this cluster has past for the moment!
Denice <>
Belmont, MA USA
Friday, September 24, 1999 at 09:34:08 (EDT)

Well, I came close to going to the emergency room early this morning-then I thought I would go in and just beat my husband up for being able to sleep so peacefully. But decided not to do either and took my medicine and used the ice pack and suffered. Then I thought to get on the Internet and see if I could find anything out about CH. To my surprise I did. Thanks so much for all the comments I read. But doesn't any Doctors read this. Surely if they did someone would find a cure. I'm waiting and hoping it is soon. Because I am a 66 years old Great Grandma and would love to enjoy my retirement years without pain.
Dot <>
Leesburg, FL USA
Friday, September 24, 1999 at 08:28:10 (EDT)

Ditto to knjohn1111. Tried to e-mail but your address doesn't compute.
Bob P <>
San Luis Obispo, CCA USA
Thursday, September 23, 1999 at 21:33:22 (EDT)

Just stumbled across your site and want to thank you. I'm crying now after reading the postings. I've had 18 pain free months, but am back in the 'bad place'. I've had these things for 17 years, yet still feel like I'm insane and nobody understands what these things feel I thank you all for your descriptions and commiseration...I know I'm not alone in this madness. I'm at that point where I'm terrified of going to sleep, but am so exhausted I can't think straight.
scott <>
los angeles, CA USA
Thursday, September 23, 1999 at 20:59:37 (EDT)

John -- knjohn1111 your e-mail add is not complete send it to me
Bill <>
superior, wi USA
Thursday, September 23, 1999 at 19:49:14 (EDT)

Thank Goodness for the support of "us" Cluster Headaches = Devil's Grip I wouldn't wish them on my worst enemy..... No way you can "hate" that much..... IB
Dave in Ky <>
Thursday, September 23, 1999 at 03:15:32 (EDT)

I have had clusters for about ten years. This site is by far the best source of information that I have found. I have given up on doctors for treatment, nothing seems to work. I have been lucky up untill now, my pattern was always 1 to 2 per day for between 2 weeks to two months. This cycle is 2-6 per day, big bummer! I find myself trying to stay awake in fear that if I fall asleep within 2 hours I'll be having more fun than I can take (I have to joke about it for self preservation). It has been a couple of years since I've seen a neuologist so I think it's time to give them a shot again.
Ben <>
Thursday, September 23, 1999 at 02:40:58 (EDT)

I need some help please. they hurt i want to kncok my head against ghe wall. sometimes I do. Is there anbody there
John <knjohn1111>
St. Augustine, fl USA
Thursday, September 23, 1999 at 00:13:25 (EDT)

I've been a cluster headache sufferer for ten years now, having suffered my first cluster in the summer before I started law school. At the time, it was misdiagnosed as a sinus problem, for which the doctor wanted to perform surgery. I've suffered through five more episodes, the current one having started around three weeks ago. I'm glad to see this site, and to know I'm not the only one suffering from this dread problem, which leaves me almost completely out of it during cluster episodes -- though I'm sorry to see so many people going through the same pain.
Neil L. Glazer <>
Philadelphia, PA USA
Wednesday, September 22, 1999 at 16:00:12 (EDT)

Just found this page and I'm not sure how I feel. Sick, I guess. Has there never been a doctor who suffered from clusters? I'm 25 and I am just starting my third "cluster" of headaches. The first came in the fall of 1995; the second came in the spring of 1998. Each lasted a couple of months and I dealt with them by lying down and crying. During the spring of 1998, I discovered the benefits of oxygen because my grandfather happened to be on it 24 hours a day. I could not find a doctor, though, who would give it to me. They would nod and agree that it worked, but then they would give me some other useless pill or nose spray. Since that spring, my grandfather has passed away, I have moved to Maryland, and I've become an eighth grade math teacher. Today I got my first headache at school. In the classroom. As if eighth graders weren't tough enough! I got another one when I got home from school. Looks like I'm in for it again. How am I supposed to teach?
Matt Jackson <>
Columbia, MD USA
Tuesday, September 21, 1999 at 21:58:08 (EDT)

Hello! I feel already better...I have suffered from clusters since I was 15 (13 years now)and until today I have had trouble finding information about cluster headaches. I thank you deeply for this web site! My clusters started six weeks ago after two years of pain free life and I started feeling extremely desperate again. Thank you for all the information I have found here. I feel like I can go on again with a little less despair!
Marika Viuhko <>
Tuesday, September 21, 1999 at 09:16:35 (EDT)

hello i have tried everything from vicodin to beta blockers to O2 and I am still in great pain. Have any suffer's tried Lithium and does it work? And, have any of your suffer's tried any medication that you put in your eye? It seems that my neck and eyes are really affected during my cycle and I would love to know If anyone has had luck in preventing the pain and discomfort. It seems the only luck I have in stopping mine ( for a few hours that is) is with Ice and steam. But even that doesn't work. The triptifane drugs dont work for me. If anyone has any suggestions or comments I am all ears.
Randy Taylor <>
Wheeling,, IL USA
Monday, September 20, 1999 at 17:34:55 (EDT)

I have suffered from cluster headaches for about 18 years now, it started when I was 18 years old. the headaches reoccur every year, often during the last quarter. But sometimes during summer. At this moment I am in the middle of such a terrible period. 100% oxigene mostly gives some relief, otherwise a lot of painkillers might help. Not always, unfortunately. When I am in a period, I don't drink any alcohol at all. Normally I like to drink some red wine in the evening. Instead I started to drink juice and I found out (or believe) that drinking juice only increases the frequency and the pain! That is why I stopped drinking any citrus juice in the evening and I believe it has a positive effect. I have not had a cluster in the last 3 days / nights now, so it looks promising. On the other hand, it might just as well be that I am coming out of the cluster now (had it for about 3 months now). Anyway, I also have a theory about cluster headache, and I wonder whether any research has been done in this field: since my right shoulder is always very tensed and painful during (or just before the cluster starts) and I hardly can move or lift my right arm during a cluster, I wondered whether there is a correlation between muscle tension, muscles pressing on veins and/or nerves in the neck/shoulder and the occurence of the headache? Before I go to sleep I always use some kind of nasal spray, because I do see a relation between a stuffed (right !) nostril and nasal cavity and the headache. I wish all you cluster heads the best, and I truly hope that someday there will be a simple and 100% effective drug that prevents or treats Cluster headaches once and for all! Kind regards Jeroen Deenen
Jeroen Deenen <>
Houten, Netherlands
Monday, September 20, 1999 at 04:39:05 (EDT)

Well, I am almost in tears. Finally I can talk to people who understand the pain. Going on 16 years,No relief. I gave up on Doctors a few years ago, The last thing he told me was that I would outgrow them.After finding this site and reading all the stories it does'nt look like that is going to happen. I need a doctor to go through just 15 minutes of the C.H. experence then I would have his attention! Let me tell you about the only way that I get any relief from my headaches is if I can make myself sneeze really hard 5 or 10 times It seems to shorten the length of the cluster. I dont really know what to do anymore no one I know understands the pain I go through. I guess I will just wait until I "OUTGROW" them. Glad I found everyone, It is good to know that I am not alone,but it is sad to know that there is so many of us out there that have C.H. Thanks for listening.
Mike <Nickell pool>
Denair, CA USA
Monday, September 20, 1999 at 02:17:40 (EDT)

Oh my God I cant believe it! Its so true,I feel so alone with my cluster headaches.Thank you for creating this. I'm in shock.I've had clusters since I was 9 and now I am 37.I have had no luck with any medication so if someone has any suggestions I would really be grateful.I have not been able to work for 7 years.
Shannon Zelmer <>
Winnipeg, Canada
Monday, September 20, 1999 at 00:52:52 (EDT)

Hail he or she who finds the cure!
Richard Hicks <>
Hays, KS USA
Sunday, September 19, 1999 at 14:13:24 (EDT)

This is a very useful site!I found it by accident and already have learned more about C H than my doctor could tell me.I have copied some of the info to share with him also.Thanks again ,Steve
Steven F. Price <>
Elmer, nj USA
Sunday, September 19, 1999 at 00:07:33 (EDT)

this is great! now is have a place where i can come to find a way to get though the pain of this mess. been reading all the methods of relief. who ever came up with this page thanks!
Mitch Williams <RACERXV8@ALO.COM>
liberty, nc USA
Saturday, September 18, 1999 at 22:45:12 (EDT)

We are new to the website, but not to cluster headaches. My husband has suffered with them for 50 years. In the sixties his doctors called them "histamine headaches". Once he was in the hospital for ten days while they tried to find a cause and somthing to ease his pain. We have tried most of the suggestions and drugs we see mentioned here, but Imitrex (all kinds) seems to give the most relief. We save it up for 20 months in order to get through his two month episode. This website is a blessing to those of us who have never met another CH sufferer, BUT ALSO, it will become a valuable resource for doctors and med students who really have not been taught a lot about headaches of any kind. We are retired now, but my heart goes out to those who have to go to work at a tedious job while fighting your pain and those who must care for small children. Keep hope alive! Talk to everyone, especially doctors about this pain. Last year when my husband was taking chemotherapy, he assured his doctors it was not as bad as cluster headaches. We read your letters through tears, hoping and praying there will be an answer soon. With love and understanding, Pat
Pat <>
Wynnewood, ok USA
Saturday, September 18, 1999 at 18:37:29 (EDT)

Found the site for the first time. The entries made me cry.
Julie Lupson <>
westbury, NY USA
Saturday, September 18, 1999 at 12:35:11 (EDT)

Thank-you, thank you, thank you. I can hardly wait to show this site to my husband. He has been a sufferer for more than 20 years and he is only 41. Lots of great information!! I'm sure he will find it helpful, but most of all reassuring---he is not alone.
Marnie <>
Friday, September 17, 1999 at 20:30:27 (EDT)

And thank God for narcotics! :^)
Tony Rowlett <>
Anchorage, AK USA
Friday, September 17, 1999 at 14:07:19 (EDT)

One last clarification (to post below)for those unfamiliar with the term agonist; as an agonist, Imitrex acts to activate a specific receptor in the same way regular serotonin does (versus an antagonist, which would block serotonin's action. Imitrex is just very selective for one sub category of seratonin receptors (5HT1D), & leaves the other serotonin receptors relatively unactivated.
Don <>
Friday, September 17, 1999 at 14:00:47 (EDT)

I have been a CH sufferer for roughly 12 years. The first time I had them, I incorrectly assumed it was wisdom teeth, so I had them removed. The second and third times, they were misdiagnosed as sinus infections. The fourth time (a few months ago) they were again misdiagnosed as a sinus infection, but this time the CHs stayed around a little longer than normal. Finally, a neurologist hit the nail on the head and diagnosed me as a CH sufferer. The Verapamil that she prescribed seemed to cut the cycles after a few weeks (I took them for about a month). This may sound absurd, but I consider myself extremely lucky to have cluster headaches. The neurologist scheduled a routine MRI for me which turned up a potentially fatal brain tumor known as a colloid cyst. Without the CHs, I never would have found this tumor. The tumor sits almost exactly in the center of my head next to the hypothalamus. As it grows, it can eventually block the flow of cerebralspinal fluid from the third ventricle to the second (I think) and cause sudden death. I will need brain surgery sometime in the future to remove the cyst as they do tend to grow. It is currently only 7mm in size, and I am to undergo MRIs approximately every six months to monitor its growth. In the meanwhile, I am very THANKFUL to my neurologist for being so thorough. I think that everyone who is 30 or older should have routine MRIs performed. It's too bad they're too expensive, although insurance covered mine almost entirely. I want to say that I feel so much better now that I've found this wonderful site. I am thankful to its creator and maintainer for putting it up. It's amazing, truly, to read so much that completely mirrors my own suffering. I have shown this site to my girlfriend and family. They now will know that there are a lot of tears, in addition to my own, being produced from some very horrible and very real pain. Thank goodness I found you all.
Tony Rowlett <>
Anchorage, AK USA
Friday, September 17, 1999 at 13:48:08 (EDT)

Hi, I have been in pain for about 7years now. I did all of the catscans and eye test, I could think of I went to a dentist to see if there was something wrong there. Finally my Dr. put me on blood preasure pills and it went away for a while but its back. So I will try the bp pills again and see if it works.
Randy Cates
Rockford, Il. USA
Friday, September 17, 1999 at 13:39:56 (EDT)

Some random thoughts on blood flow, serotonin, melatonin etc.: In a previous post I had said Imitrex is a serotonin enhancer, but it is apparently not. A web site gave me faulty information.. a better site indicates it is actually an agonist for a serotonin receptor subtype. Serotonin has many functions in the body besides preventing depression.. serotonin is apparently the bodies messenger which causes the small outer blood vessels to dilate (the bodies response to heat), and the inner, larger vessels to constrict.. Cold will cause the reverse; ie restricting outer blood vessel to prevent heat loss, yet warm inner vital organs. I think most vascular head pain is associated with over dilation of the outer, small blood vessels of the head? but it could be different for different people.. There is some confusion surrounding whether it's just dilation or constriction of blood vessels in of itself that causes pain; The blood dilator Nitroglycerin is out of the system before the ache begins, and my experiences with viagra are similar (viagra dilates vessels in other parts of the body as well..) I get some headache during, but the worst pain seems to be later.. 'honey, I've got a headache' takes on a whole new meaning :) So is the headache after blood vessel dilation just a delayed effect, or is the cause the enhanced constriction due to a rebound, or is it a constriction only after a certain degree of initial high dilation? Most people indicate head pain starting at bedtime.. is it because levels of dilating serotonin are diminishing (serotonin is being converted into the sleep hormone melatonin)? Or is it just because the end of the day is the point when the body has experienced the most continuous stress for the day? (grinding teeth, knotted/cramped jaw & brow muscles etc.) I suspect it's different in different people. Hangovers might fit the expansion/contraction profile as well since alcohol causes skin flushing & then compounds the rebound contraction with dehydration (drink extra water at night?) There is a connection between the brains 24 hour clock, the suprachiasmaticnuclei (SCN), and melatonin/ serotonin levels. The SCN clock, which is set by light/dark variations perceived through the eye, controls melatonin levels (as well as serotonin levels since melatonin is made from and therefor at the expense of serotonin. Both migraines & CH share a diminished SCN output (see medical info section here).. probably both are from loosing sleep at night. Sleeping during the day, would then compound the reduced SCN output.. I try to avoid sleeping during the day & try to get some bright sunlight early in the day to get my SCN output back up, so I can sleep the next night. (I think there's a theory that lithium affects the SCN output somehow, but I have no idea whether there's any validity to that) Getting the SCN output up to a higher amplitude will stop melatonin output during the day and at the same time allow extra serotonin (by stopping the serotonin to melatonin conversion). Whether the diminished SCN amplitude helps or hurts migraines or CH I'm not sure. It might depend on whether the extra serotonin available when the SCN has a normal, high output helps or not. I personally feel terrible after sleepless nights, but can't tell if it worsens pain or not. Oh, an interesting side note; the retina has no pain sensors, but the pupil, trying to constrict too tightly does hurt (attempting to shut out light). The pupil trying to constrict is usually just a temporary response to a sudden, dramatic increase in light levels (coming out of a movie theater for example.. until the retina has time to adjust itself), but there might be some connection with melatonin levels too. It's possible that people with a low SCN output will be more sensitive to bright light during the day, due to daytime melatonin production (possibly the brain trying to get rest/save energy until it's more alert?). Sensitivity to bright light might fit a case of the locus coeruleous S2 receptors being too sensitive to serotonin too, but I suspect that case would be accompanied by overall hypersensitivity and alertness to the everything & would be accompanied by dilated pupils.. similar to a fright response, so I'm betting on the excess melatonin during the day theory to explain eye sensitivity in most people. CH suffers are different from migrainers in that they also experience blood vessel irritation/pulsation of the eye, possibly from blood vessel dilation & constricton? I'm guessing the eyes qualify as vital internal organs when it comes to blood flow.. which might make it's hot to cold trigger different?Light has the most effect on changing the SCN amplitude, (a bright day coupled with a dark, sleep filled, night will increase the SCN amplitude) A high amplitude from the SCN will make you feel the best and most alert during the day, as well as give you the best sleep at night too. Although light has the most effect on the SCN amplitude, heat can have an effect on sleep too. I know I can't sleep at all if the temp is too high (but my muscles don't cramp as much with higher heat, so I tend to compromise & put a blanket or two over any part I'm worried about cramping & keep the rest of me cool so I can get good sleep) It might be that a higher temp limits how far the SCN can swing at night (limiting melatonin output at night)? If this is the case, people who are overly sensitive to blood vessel dilation might get too much extra serotonin at night? But even in that case, serotonin levels would still be lower at night than during the day, so it's not clear. For those affected by hot weather, maybe the blood vessels need to rest at night & don't get a chance if it's hot? Possibly it requires a dilation beyond a point the blood vessels have been previously used to, before pain will occur upon reconstriction? If that's the case, the question is: do you keep vessels dilated all year by boosting serotonin low points (Fall & Winter) or do you limit serotonin levels when it goes beyond a certain point in Spring & Summer? (the seasonal variation in serotonin is diferent in different people)I'd guess it depends on the individual & how much serotonin there is to spare, keeping in mind that lowering serotonin tooo far always leads to severe depression. Of course excessive use of serotonin enhancers isn't good either (fen-phen type heart damage in extreme cases) And of course there could also be all types of cramped or inflamed muscle, nerve, sinus, scarring, receptor etc. damage issues completely separate from or in conjunction with serotonin or blood dilation, and I'm sure there are different causes in different people. Take everything I've said with a grain of salt; these are just educated guesses & ramblings. Some resources: Lists different CH drugs & what they do: Describes how SCN works/melatonin/SAD: Describes Serotonin & all it's receptors:
Don <>
Thursday, September 16, 1999 at 20:04:39 (EDT)

I wrote about my husband on Sept 5 or 6. Since then we went back to same doctor he saw in 1988 that told him to take medications I mentioned then. This time we started Oxygen and it is helping. ALSO for when my hushand is out on the road and Oxygen is not available the doctor is having him try Ladocaine 4% solution used as nose drops.(2 or 3 drops in affected side) these drops are placed as far back in nostral as possible. Lay on flat surface and hang head over side so nostral opening is straight up. Hurray!!! It works. CH stops within 5 minutes or less.
Hull , IL USA
Thursday, September 16, 1999 at 18:42:42 (EDT)

I am grateful to find this board from the book Cluster Headaches By Goldstein. I have been free for 2 years until 14 days ago . Now a new and different cycle . I have pred. now and some Hydrocone . I have never tried Oxygen but just got it today after reading about it. I had no idea that there was any info on these ,always migraine. I took Zomig 2.5 yesterday and Ha dthe longest 12 hour wouldn't die down headbanger that I can recall. I am 43 and have had these since 19. I feel very emotional that all these sufferers have written in and wish good luck to all and short cycles. Best Warren
W Bacon <>
Oxford, NY USA
Thursday, September 16, 1999 at 17:05:55 (EDT)

At last I found info that may help!I have had many doctors checkout my CH's but most are 'not too sure',all the symptoms fit.I'm a 46 year old male,high stress job etc etc.So far the only thing that holds me in a longer period of remission is 'Feverfew'.Have suffered for last 5 years but have also had a lot of dental work,could it be TMJ?? Will continue to explore your site for more info, Thanks TH
Terence Haines <>
Rockford, Mi USA
Wednesday, September 15, 1999 at 17:47:59 (EDT)

I just found out about this WebPage. It is comforting to know that there are people out there that know and fully understand what CH is. I am 41 years old and suffering from CH since 6 years. Tried all possible therapies and ended as most of us do, learning to live with it using Imitrex, Cafergot, Sinustab etc.. Reading all of your messages reassured me that I'm not psychosomatically exaggerating my pain. Since last year the frequency of my seizures and the length of the periods went down from 10 months out of 12 at a frequency of 2 to 3 a day to 2 periods of about 3 months (spring and autumn) with a frequency up to 2 per day only. I'm no therapist but I assume it is since a "Geo-sanitarian" came to our house and installed some, what he called radiation and radio wave deflectors. We also followed his advice to cut off all the electricity in the bedroom. I wish all of my co-CH sufferers to be relieved from these horrible seizures. I wish their family to keep on finding the courage to stand by them as their support is so important to us.
Guido Van Laethem <>
Erpe-Mere, Belgium
Wednesday, September 15, 1999 at 15:37:30 (EDT)

I found this site this morning after my third day of my new series of CH. I've been suffering from CH for more than 30 years and find some comfort in knowing that I am not alone (don't get me wrong - the comfort comes not from knowing that all of you are suffering - but from knowing that I'm not psychosomatically exagerrating my pain). my episodes come every 2-3 years and last for 5-6 months ...basically I fit the profile listed on this site for cluster traits - with the peak period of 2-3 months having the most frequent (10+ per day) and most painful ("suicidal") CH. I've tried almost everything (O2 helps sometimes) and was using the Immitrex trick and taking 9 reduced shots a day (although the smaller shots only took the episodes out of the "suicidal" category). BIG PROBLEM: since my last series 3 years ago, I've developed a heart condition (from Immitrex??) and can no longer use any type of vasco constrictors - and for other reasons I can't use steroids. Do any of you fellow sufferers have any ideas that could help me? thanks.
mordy <>
long island, ny USA
Wednesday, September 15, 1999 at 09:40:24 (EDT)

I am a 30 year old sufferer,(survivor) just recently diagnosed with clusters.(9months ago) My clusters were confused with my migraine headaches that I have had since I was 16 due to hormones. The theory that my doctor has is that I get clusters because of the radical change of hormones effecting my serotonin levels. I also have a copper deficiency that he is researching to see what this has any connection with clusters, which I personally believe has nil. For years I have dealt with migraines, and not to dismiss the pain of migraine sufferers because it is intense as well, however I have found that since I have experienced my clusters my migraines seem tolerable to me, when they once were not. It's amazing what a person can get accustomed to. So in short,to wrap this up, I am glad to find this site because there is a lot of information that I just was not getting from migraine sites that I had found.
Angela Gilbert <>
Portland, Or USA
Wednesday, September 15, 1999 at 03:01:13 (EDT)

Hi, found this site last night and was so excited! My husband is a cluster sufferer. Over 20 years now. We are wondering if any other CH sufferers, that have had these monsters for many years and been on variety of meds. are having any joint problems. My husband is suffering with avascular neurcrosis. Basically, the blood vessels going to the joints have closed up and no blood getting to joints and the bone is dying. We are looking at 2 shoulder replacements and a hip replacement in the next couple of years. My husband is only 43. Much too young for this type of problem and there is no history of joint problems in his family. The dr. says its very rare for someone to have multiple joints with the avascular neurcrosis. Usually only in 1 joint. If seen in multiple joints it can usually be traced back to alcohol abuse or steriod abuse. (neither is the case for my husband) We are wondering if there is some relation to the CH's or to the meds he has taken over the years. Any help would be greatly appreciated.
Gwen <>
Arab, AL USA
Tuesday, September 14, 1999 at 22:17:18 (EDT)

They're back! After an almost 3 year remission the pain has come back. Went to the doctor yesterday, and he came very close to calling me an addict. He would only prescribe naproxen (which dulls the pain if enough is taken). I haven't had a prescription for pain in almost 3 years. Guess I need to find another doctor. I am 39 and have been suffering with these since I was 21. Usually in the Fall for 3-4 weeks, and then they go away for 2-3 years. I am in day 2.....only 26 more days to go (I hope)! another doc.
Toni Cisco <>
Calgary, AB Canada
Tuesday, September 14, 1999 at 18:20:30 (EDT)

Hi glad to see that I'm not alone. I'm 39 year old male and just started to get cluster headaches 2 months ago. I thought I cloud take alot of pain but this has proved to be to much for me. I just hope my neurologist can get me back on the right track. I get cluster headaches two to three times a day mostly at night an early in the am.morning. Thanks for the for this web page it has given me some good info.
Ken Zimmerman <>
Harrisburg, PA USA
Monday, September 13, 1999 at 15:52:22 (EDT)

I am 26! I have been suffering for about 4 years now. My doctor's have tried everything the only thing that works sometimes is oxygen. I am to the point where I am afraid to go on over night trips because I don't want to be somewhere and not have the oxygen. This year (1999) has been the worst year every with Cluster headaches. I use to just get them at night and now I am getting them in the middle of the day, but mostly on the weekends. So I end up sleeping all day and then I can't sleep at night and then I end up getting one when I just start to fall asleep. I also take the imtrix but find that the pill does nothing for me and by the time I get to the emergency room (to get the injection) the headache is gone because I have had to wait soo long for the to get to me. Thanks for reading this!
denice <>
Boston, MA USA
Monday, September 13, 1999 at 14:26:02 (EDT)

I'm a sufferer of over 15 yrs now. At first the headaches were so bad that I thought it must be a tooth so I had it pulled and low and behold a few days later they came back with a vengeance. Mine are always nocturnal. About 1 hr after falling asleep. I wake at 1am, 3 or 4 am and 6 am. It is like living a slow death. My marriage and my life are at risk. Many times I have felt like overdosing just to get rid of the pain. Usually, the headache is on the left side of my head, with a needle like pain at the back of my eye. I take carbamazepine 200 mg at night 1/2 hr before bed and this helps me sleep. At one time, this medication worked. Not so sure any more. My doc prescibed Prozac, for depression as well as the headaches. This took about 2 weeks before I could sleep through the night but I felt "cured". I was on this for about two months and wanted to come off. Now the headaches are back again. I am taking the carbamazepine again but I don't think it's going to work. I find that my hedaches seem to come on with stress. Last night I was arguing with my husband and afterwards whilst sitting down, I felt this strange sensation in my head, like a bubble moving from the left hand side to the right hand side of my brain. I went to bed and after an hr was woken by a severe pain in the right hand side of my head this time. This pain was excruciating, like the very first headache I ever had. I'm sure the pain was as intense as the left hand side but over the years, I believe my tolerence to pain had increased. I usually take two painkillers Ibuprofen 400 mg each, make a very, very hot cup of tea and drink it fast so that the steam and heat permeate my face and nostrils, I cry, because of the pain and also to try and clear my head a little, and I also rub Tiger Balm on my temples and nostrils. The heachaches usualy last from 10 minutes to about an hr and a half. I go back to bed, dreading being woken up again in the next 3 or 4 hrs. It's a bloody nightmare, my life!
Marion Walker <>
Leeds, UK
Monday, September 13, 1999 at 05:30:40 (EDT)

Does the word "validated" mean anything to anyone? That's how I felt when I found this site. After yet another 4 days of chronic headache pain (cluster), I sought out help on the Internet for some answers! I knew I suffered from clusters and migraines, but I never knew there were so many sufferers out there! My Mom suffered from clusters until she was 39, then they just stopped. I am female, age 33, and have suffered from these headaches since the age of 10. *Question* Have any of you ever heard of a trigger for a cluster being that you go somewhere you have never been before? I read this in a book a few years ago, but have never seen it since. That's when I definitely knew I had them, because almost everytime I go somewhere I have never been, I get a headache! It makes it so hard to live life! If I weren't a Christian, I sometimes wonder if suicide would not be a spontaneous answer for me. Sometimes the headaches are so relentless and severe, I swear I am losing my mind! And people who don't suffer from them, they just do not get it..."a headache? Take some aspirin and get over it..." Sound familiar? How can you even explain it?! I'm glad I found this site and I appreciate this information so readily available to us. If anyone has heard of the trigger of going somewhere new, please write me...I would be interested to hear what you know. Thanks and be well!
Shelley <>
Palm Desert, CA USA
Sunday, September 12, 1999 at 23:10:33 (EDT)

Does the word "validated" mean anything to anyone? That's how I felt when I found this site. After yet another 4 days of chronic headache pain (cluster), I sought out help on the Internet for some answers! I knew I suffered from clusters and migraines, but I never knew there were so many sufferers out there! My Mom suffered from clusters until she was 39, then they just stopped. I am female, age 33, and have suffered from these headaches since the age of 10. *Question* Have any of you ever heard of a trigger for a cluster being that you go somewhere you have never been before? I read this in a book a few years ago, but have never seen it since. That's when I definitely knew I had them, because almost everytime I go somewhere I have never been, I get a headache! It makes it so hard to live life! If I weren't a Christian, I sometimes wonder if suicide would not be a spontaneous answer for me. Sometimes the headaches are so relentless and severe, I swear I am losing my mind! And people who don't suffer from them, they just do not get it..."a headache? Take some aspirin and get over it..." Sound familiar? How can you even explain it?! I'm glad I found this site and I appreciate this information so readily available to us. If anyone has heard of the trigger of going somewhere new, please write me...I would be interested to hear what you know. Thanks and be well!
Shelley <>
Palm Desert, CA USA
Sunday, September 12, 1999 at 23:09:22 (EDT)

Mia, I'm sorry if I offended you.. but the information I left is non-the-less, the latest scientific opinion on migraines, (which I suffer from, complete with the occasional blinding auras..). You obviously suffer from something more serious, and I sympathize with your plight, but the information I left will still help migraine sufferers (as well as a significant portion of cluster sufferers, from what I've read here), so I'm a little perplexed as to why you would find the extra information offensive? I will add that there are two schools of thought on seratonin.. Since seratonin dilates blood vessels, logically it should worsen pain according to current thought. This is the reason some doctors prescribe seratonin reducers, ergots etc. For those sufferers I truly feel horribly sorry since losing too much seratonin will lead to severe depression.. I prefer keeping my system loaded with seratonin.. it makes me happier and I personaly suffer much less pain ultimately. One interesting side note, (if I can be permitted to add some slightly off subject information without offending anyone?).. After back surgery which was caused by severe back muscle cramping (if you suffer back pain it's pain in your muscles, since bones don't have nerves), which caused a herniated disk, my doc gave me a prescription for Flexaril (sp?).. (a muscle relaxant) She gave me the prescription to ward off any future back cramping (I lost the usage of my foot the first time & didn't want That to happen again :). Well, to cut to the chase; after a few years, I noticed I only had to use the Flexaril in the Fall and Winter, hardly ever in the Spring & Winter (unless I stayed indoors too long due to a need for air-conditioning). I looked up the insert for Flexaril..(Cyclobenzaprine (sp?)) And was astonished to find that the chemical structure is Exactly the same as a tricyclic, MAO inhibitor (Which boosts Seratonin levels by blocking its reuptake) So somehow, a seratonin enhancer relaxed my back muscles enough so that they could now carry blood and heal themselves (cramped muscle aren't letting any blood circulate.. that's why massage helps.. maybe why Oxygen helps?). Well anyway, the fact that I never needed any extra seratonin for back pain or head pain in the Spring or Summer (as long as I get out frequently), leads me to the conclusion that keeping seratonin levels up not only keeps me happier, but lessens any pain associated with cramped back, face, or head muscles.. For more info on how the brain controls Melatonin and Seratonin levels naturally based on light levels see (too much info to post here). It has some interesting info on the relationship between Melatonin & Seratonin.. (chemically similar, but almost opposite effects.. the brain converts one to the other as needed based on light levels) Oh, IMPORTANT: seratonin has many functions in the body; one of them is a signal to the uterus late in pregnancy (hence those happy rosy cheeks in 3rd trimester & subsequent post partum blues when seratonin levels plummet after pregnancy) so NEVER take synthetic seratonin enhancers or reducers during pregnancy.. check with your doc if uncertain! Please note that all of the above is just meant to be informative and will undoubtedly not apply to all CH sufferers. Well, I sincerely hope I haven't offended anyone else and hope this extra information helps somebody out there.
Don <>
Concord, MA USA
Sunday, September 12, 1999 at 21:15:03 (EDT)

Dear Don, Please don't take this as being rude but I need to share with you that you are so wrong about the message you left on the message board of Cluster Headache sufferers. The pain they suffer with is worse than a headache. Imagine being stabbed repeatedly in the face (just under the eye and to the side slightly) over and over. Now while that is happening, imagine your head in a vice. Now take away your vision, your hearing, your balance and your dignity. Once you have had that type of pain over and over 3 to 10 times a day on a regular schedule usually lasting 3 to 5 months with possibly a month (if your lucky 2 months) in between the episodes, then you may call it what you want. I do not wish to make you angry, just to educate you to the fact, you insulted many cluster victims with your posting. An appology post would be a very nice thing, but of course, I can't make you do that, I can only request it. Other than that, I thank you for "trying" to help. Mia.
Sunday, September 12, 1999 at 18:18:17 (EDT)

I am a cluster headache sufferer too. I've had these demons for about four and half yrs. now.... I first found out about these demons from this website. we started doign research after we found out that the doctors that i was seeing didn't seem like they wanted to help me.. Then when my isurance ran out I had no where to turn to. most of the time I have about a 8 or 9 on the scale that i've seen here at the site. It makes it very hard on my family to see me in all the pain i'm in. I still live with my parents and i'm 20yrs. old because I can not hold a job down long enough to make enough money for me and my wife to be to get a place of our own. It really makes it hard on me also knowing that there is nothing that I can do. When i was still going to doctors everything they tried wouldn't work for nothing, it seemed like that i was being tossed between here and there. I'm wanting to know more information, and what I can do because it feels like my life is fallign apart. the thing that worry's me most is what will my future hold for my kids if I can't be cured....... Thank you for listening and doing this web site..
John Kammerdiener <d&>
chowchilla, CA USA
Saturday, September 11, 1999 at 13:29:39 (EDT)

I have suffered from migraines for about 10 years, but started having clusters (which are definitely different) about 2 years ago. I always get them in Spring, when the weather starts to warm up, and my dr. says it’s the air-pressure changes. I can tell if it’s going to be a hot or cool day before I get out of bed – if it’s going to be hot my head is already thumping. I also wake up at night with intense headaches, and I have to get up and wander around in the dark for a while till I’m too tired, and eventually go back to bed. I would estimate that mine measure about 7 on the Kip Scale – thankfully I’ve never had more than that. Last year I was prescribed Sibelium, to be taken nightly as a preventative, and after about 10 days the headaches left. This year I am pregnant, and my dr. said I can absolutely NOT take Sibelium again ( to which I burst into tears), and must stick to Panado – what a joke, Panado doesn’t even touch it! I’m so excited to have found this page, with all the new info and things to try. There has to be something I can do while pg! Unfortunately most of the drugs go by different names here, but i will find a way to track them down.
Alice Goodall <>
Pietermaritzburg, KZN South Africa
Saturday, September 11, 1999 at 10:05:22 (EDT)

kevin condon <>
miami, fl USA
Friday, September 10, 1999 at 20:05:18 (EDT)

I stumbled across this site by accident & would like to throw out a few things I've discovered over the years. The most common cause of migrains etc. is insufficient Seratonin which in turn affects blood flow. (the brain itself has no pain sensors, but the blood rich scalp etc has plenty of pain nerve endings.. as I well know :) The trigger is usualy something that then causes abnormal fluctuations in the Seratonin levels. Based on some of the comments I found here I suspected that the popular Imitrex is a Seratonin enhancer & looked it up.. it is. For anyone who wants to keep their Seratonin levels elevated & steady without too many synthetic drugs, I'd recommend getting outdoors to get some sunshine for at least an hour each day (preferably early in the morning. It will take a few days to adjust the Seratonin receptors.. see for more info on the how the brain adjusts Melatonin & Seratonin levels based on light levels..
Don <>
Concord, MA USA
Friday, September 10, 1999 at 18:02:14 (EDT)

Friday, September 10, 1999 at 12:24:38 (EDT)

I have suffered from these headaches for the past 15 years, but a definitive diagnosis, given only recently, was slow in coming since I am female. I am VERY glad to know there are other women with this troublesome disorder. I would love to share information.
Susan Oldland <>
Davis, CA USA
Thursday, September 09, 1999 at 11:33:55 (EDT)

After 30 some years Im finding out that Im not realy alone. Istarted getting them when I was a sophmore in highschool, its been a battle sence. Lots of doctors, lots of differant meds. As you know nothing seems to work or if it does not for long. Im in a cycle now sofar the medicene is working -Ercaf and Verapamil and oxygen if needed- but the headaches are getting more persistant. No screamers yet, so Im lucky I guess. Thank you for this web site.
Darryl Tilton <>
colo spgs, co USA
Wednesday, September 08, 1999 at 01:54:25 (EDT)

Greetings. I am 63 years old and had my first onset of CH in about 1978. That was one year after I quit smoking three packs of cigarettes per day. I wonder if anyone else has noted any correlation between quitting smoking and a first onset of CH. In any event I am eperiencing my first bout in five years which started about four months ago, In the past lithium was the drug of choice (300 mg) increasing from 2 to 3 times per day. The preventative effect wore off and I went first to a neuologist who prescribed Amidrine and Neuontin. Those didn't work too well so I called him back and he added indomethacin (which worked very effectively). However, since I am a belt and suspenders type, I also checked in with the headache clinic at Roosevelt Hospital in New York City. The physician who saw me there said I should not take indomethacin because it does "horrible things to your stomach". So he suggested I taper off of that as well as the Neuontin and Amidrine and start taking Depakote building up gradually to 1 in the A.M and two at bedtime. We'll see how that works out. I am still taking 3 lithium capsules per day. I hope this information is of benefit to anyone. Feel free to share any pharmaceutical success stories. For a pain free life!
Alex Kolben <>
New York, NY USA
Tuesday, September 07, 1999 at 18:44:14 (EDT)

Forgot to include my e-mail address when I registered.
Craig <>
Grand Rapids, MI USA
Tuesday, September 07, 1999 at 11:44:04 (EDT)

Suffered since late teens...most episodes last from one to three weeks, every night, same approx. time. Any correlation with cervical disk problems? Have had disk surgery and fusion (C4-C5).
Grand Rapids, MI USA
Tuesday, September 07, 1999 at 10:32:37 (EDT)

Have suffered with cluster headaches for many many years. My only solution is oxygen plus the support of my family (and not feeling sorry for myself.) Found your site yesterday and promise to read every work. Good work!
Stef <TifEagle7@aol>
Tarpon Springs, FL USA
Tuesday, September 07, 1999 at 08:57:05 (EDT)

I have been a victim of CH's since I was nineteen. I thought I won the war, until late Spring "99. Like an unwanted relative it decided to drop and stay a while. I am very excited about this website. Since my last episode 5 years ago, it seems there has been many changes. Doctors now are finally getting a little bit of education on what cluster headaches are. I find that we the patients must be proactive and find the information and share it with our peers. I hope and pray that the 1999 physician is more well read on our condition and can diagnose those newer patients rather than the misdiagnosis many of us have gone through. Today after a dozen years of pain,nausea,depression, congestion,iritation,light sensitivity,leg shaking,and several other symptoms and effects, I can honestly say that I am relieved to know that someone knows exactly what I have been going through. I am very scared of how our condition will effect our lives today and in the future. I wonder if I will be able to be productive and not have to worry that my 10 am headache is coming, therefore I will not be able to play ball or go shopping or even make a phone call. And I wonder if the meds we take will have long term medical effects on us. I have never met or known anyone else who suffers from our condition. I am interested in corresponding with our fraternity of sufferers.(sufferers also include the loved ones that have to deal with us)
jonathan artz <>
bayside, ny USA
Monday, September 06, 1999 at 14:08:57 (EDT)

Nice to meet you. I was looking for some information to help my husband who is a CH sufferer, and I found your wonderfull web with such a lot of information and help! Thank you very much for your work.
Teresa <>
madrid, Spain
Monday, September 06, 1999 at 12:45:35 (EDT)

As a neurosurgeon .I suffer from cluster headache from about 3 years ago , after computer working my headache increased , i work in managements of cluster headache and possible new herbal treatments .
Farzad Saadloo Parizi <>
Yazd, iran
Monday, September 06, 1999 at 12:16:01 (EDT)

Help! I am going out of my mind! You'd think after 25 years of this terror that I'd have a better handle on it! I am convinced that I have been prescribed everything on the market .. most recently DHE and now Stadol. DHE works but I can't administer the injections myself and no one around to do it for me! I am terrified about the Stadol .. especially after reading the stories about addicition, etc. When my life is not being destroyed by seasonal cluster attacks ... I am a happily married fun loving 46 year old woman. Pat
Pat Leverre <>
Wasa Lake, BC Canada
Monday, September 06, 1999 at 11:52:37 (EDT)

Larry Jurgens --- contact me ----- Your E-Maill is inconplete Bill
Bill K. <Mod.1K@Juno.Com>
Superior, Wi USA
Monday, September 06, 1999 at 10:13:11 (EDT)

Here we go again! I've been fighting this Deamon for 37 years now and after a 4 year reprieve I really was starting to believe that IT had finally faded away with older age. Not! I can't begin to tell you how exciting it was to stumble across this site. I have never heard another C/H victim tell their story. The feeling of "being connected" was immediate. Thanks everyone,Thanks.
Ron Hite <>
Cincinnati, Oh USA
Monday, September 06, 1999 at 06:43:46 (EDT)

I'm now going on my third week of my first bout with cluster headaches....and simply put, it's not fun. with migraines, which i used to get on occasion, i could usually sense they were coming, pop a a bunch of pills, and head em off at the pass. but these clusters are a killer! in the past couple weeks, i've visted my regular doctor, an emergency room doctor, and a neurolgoist. i've tried four different prescription drugs (so far like imitrex the best), and a slew of over the counters. i've missed four days of work, slept through a few of my precious days off and listened to my father tell me my headaches were emotionally induced and that he hopes i can figure out what's really bothering me so the headaches will go away (gee, thanks dad!). i'm hoping these guys leave as quickly as they came...if not, i'm thinking of switching proffesions and becoming a "master temple massager," which, i must add, does little to rid my pain. anyone have any suggestions? i'm new at this business....and to be honest i wish i could retire now!!!!
kate <>
Montclair, NJ USA
Monday, September 06, 1999 at 00:20:36 (EDT)

My husband has had CH for about 20 years. He is on 2 120mg Inderal LA capsules a.m. & p.m. and has had only 2 very short breakouts. When this happened he would take and Inderal and 2hours later a Tynel 3 then 2hours later an Inderal and repeat until cycle was broken-about 2 days. Just last week the headaches started for the third time and this is no longer helping. They are getting more severe with each headache with maybe 2 or 3 hours at most almost pain free. Hope some of the info I have found here will help doctor with trying new medicines. THANKS
Hull, IL USA
Sunday, September 05, 1999 at 20:23:39 (EDT)

I have suffered from Clusters for over 30 years. I am 65 years old and am going through my current "season" which usually lasts 6-8 weeks. Imitrex nasal spray is my latest meds. Not a big help. It is harder to deal with as I age.
Larrry Jurgens <GGJurgens>
Yakima, WA USA
Sunday, September 05, 1999 at 14:21:24 (EDT)

I suffer from cluster and migrain headaches. Does anyone else experience ringing in their ears as well as "fullness"?
RA <>
Sunday, September 05, 1999 at 11:35:36 (EDT)

Cluster sufferer for about 22 years.finally servive with tyhe help of remission for now .have gone for 2 years without an attack..last year i had them almost 4 months of the year...Hang in there , someday the medical community will figure it out.. i hope
sonny miller <>
rome, ga USA
Saturday, September 04, 1999 at 15:09:05 (EDT)

About 2 months ago I woke up with the most excruciating pain "behind my eye", which got increasingly worse, as I tapped around for anything in my med drawer to swallow....Nothing helped, my eye was poring and a felt undescribably lonely. Over the course of the next 5 weeks, this would repeat every other day and up my doctor dismissed it as sinus pain, to be treated with nasal spray, acknowledging that it may take a few weeks. I was never really worked up for what might be causing this and eventually I started thinking that I was a psyche patient. One of the doctors I work with, an infectious disease specialist listened to me and told me that he thought I had cluster headaches. Now, that I know I have Classic symptoms, I know he is right and I will try to get some treatment, never drink alcohol again, and avoid chocolate, eggs and dairy like the plague. Luckily I have been in remission now for two weeks and thoughI go to sleep every night afraid to wake up with that hoffific pain, I also love evry morning I find myself having slept through. I am so grateful for this website. Thank you to whoever put it together.
Riki Medak <>
Claremont, CA USA
Saturday, September 04, 1999 at 00:33:35 (EDT)

15 years, 6-7 episodes, average 3 to 4 weeks, once per day. Until now. Current episode about 10 weeks! Sometimes 2 a day or 2 a week, this episode has me confused. Less severe this time, only a few headbangers. I have always had this feeling that these headaches were brought on by misalignment, so I would go to the Chiropractor and get adjusted. I am fortunate not to have had many long episodes, and I tend to forget what the bad ones are like, the intense pain. I have printed off a copy of "The Devil" I hope it will make me laugh the next time the band starts to play as much as it did just now. Encore!
Robert Smith <>
Vancouver, B.C., Canada
Friday, September 03, 1999 at 20:57:59 (EDT)

I am a 65 year old who is, as I write, having an episode. They started about the 1st of August this year with a pain behind my left eye. Before that, in the evening, my eye would start to tear (don't know if that has any significance). I am supposed to go to an Opthomal??? next Wednesday, but have run across this site in the meantime. Everything noted here has happened so far. Pain starts in the AM and goes, on and off, for about four hours, then stops. Next day, same thing. I may just cancel the appointment and insist on a nurologist seeing me. I'm glad I found this site as it may just save a lot of running around, ending up in dead ends.
Theodore C. Wheeler <>
Little Silver, NJ USA
Friday, September 03, 1999 at 11:16:22 (EDT)

I'm 19 years old and started having headaches which started quickly without warning. At first, I thought they were migraines as my family as a history of migraine sufferers (grandmother, mother, father). They started at the beginning of August and went to see a specialist doctor for my sinuses. I suffer a great deal with allergies. He gave me a nasal spray which I must use am and pm for one month but he said he doesn't think the headaches are due to my sinus problem. Anyway, I have been getting cluster headaches now for the past month. They seem to occur more often when the degree of humidity is high. Last night I woke up with one at 2h30 am. I was hot / cold, teeth clenched. Right now, I'm only taking tylenol till I visit my doc. again. Thanks for all the medical info. I just hope that my CH will end soon! Mel
laval, Canada
Friday, September 03, 1999 at 08:53:27 (EDT)

I thought I was done with my clusters. They started when I was 37. It took forever to find someone to tell me what was happening. At one point, they sent me to the hospital because one of the doctors thought he saw an aneurysm. After all the painful tests they could give me, they said he was mistaken. Finally diagnosed as clusters, but no one knew what to do about it. Finally found verapamil and lithium to work for me. Last cycle was almost eight years ago. Boy, was I angry when the came back three weeks ago. Finally remembered the correct combination of drugs, and they have stopped for now (or at least the last 3 days). Went to the web, and found this site. WOW. Finally someone who understands the pain. I have been so alone all these years. Many people have tried to understand. Family, friends, etc. But, no one who has not experienced this can truly understand. The worst part was that my doctors didn't understand. When I would start a cycle, and call the doctor for a new presciption, and the nurse would tell me that the doctor could see me sometime next week. Or that the neurologist is booked solid for the next six weeks. And my wife saying that she really felt for me, since she had had migraines when she was growing up. But, could I please just wait until after dinner to start again. Sorry, didn't mean to go off like that. Thank you all for being here. I don't feel alone any more, and I don't think I ever will again.
Dan McCarty <>
Sacramento, CA USA
Thursday, September 02, 1999 at 12:33:21 (EDT)

What a fantastic site.Tears actually feel down my face as I read everyones accounts. I'm not alone! Mine started at about 25, I'm now 38 and this is the first time I'm having them in August and September. I take Imitrex but have run into a problem with the new insurance company I have (damn HMO). According to them 9 pills should last 25 days.HA!!! I'm lucky if they last 9 days. My bouts usually last 2 months and the pain can last for hours if I have no meds.(how did i ever survive 11 years without Imitrex)I'm making an appointment with a neurologist for when i get back from vacation to explore other avenues of treatment. This site has been a wonderful help to me and iI look forward to visiting everyday. Thank you so much.
Kevin Crepeau <>
Jackson, NJ USA
Wednesday, September 01, 1999 at 20:24:57 (EDT)

I'll never forget my first CH 23 years ago at a high school dance with my new girlfriend. Didn't understand why then and still don't understand why today. Just my luck! Nice to know I'm not alone. I've met two people in my area that suffer also but it's amazing the info I've found just today online. I'm a classic fall and spring (mostly fall) sufferer and like an old friends, "they're baaaack!" After a couple years, you forget how nasty these things are. Doesn't take long to refresh the memory though. I've started on Inderal again. which seems to spread out the attacks to 3-4 a week but am always looking for new treatments. Hoping to make some new friends who understand what I'm going through and will offer any help to those who want it. Just found this page so I have to read on and see what you're all about. Thankx and hang in there everyone. WR
Wes Rohrs <>
Wauseon, OH USA
Wednesday, September 01, 1999 at 19:50:40 (EDT)

I came out of remission two weeks ago and ran for the oxygen bottle and lidocaine solution. Three days ago, I took an Actifed tablet. No CH for several hours. I made the connection and took another pill. I did not wake up with pain that night--unusual. I have been taking two pills per day and have had NO CH. I know this is not scientific and could just be coincidental. If so, I'm still grateful. Wanted everyone to know.
Frank Harden <>
Luray, VA USA
Wednesday, September 01, 1999 at 11:51:14 (EDT)

Been reading on this wonderful site. The memories come flooding back. The tossing on the bed. The banging the head. Squeezing it so that maybe it will pop and the pain will go away. The scalding water on the 'gum' by the canine tooth. (fight pain with pain. Required gum surgery later to repair the damage (:-) ) Coming to grips with the term 'pre-suicidal'. Ahhhhhhh. Started first attack at 17. Pain. Left side of face, came on in 3 seconds, left eye teared, left nostril stuffed. Went away in 3 seconds. On and off thing. Doctors said it was a dental problem, dentists said it was a medical problem. Dental school staff said it was a medical problem. Medical school would not admit me as it was a dental problem. Went to a private Eye-ears-nose-throat guy. He said, "You have classic symptoms'. Damn. Ergotamine was 'god in a bottle'. One little pill. Of course, after a month or so, two little pills. After a few more months, 3 and 4 pills several times a day and they did nothing but make my heart flutter. Hid from people at work for hours at a time. Relearned the meaning of pre-suicidal. Here it comes again, here it comes again . . . .. It started again one day, I said 'I should relax, not tighten up', went into an empty lab, stood by a bench, leaned with my hands on the bench, fought the battle of the titans, ferocious struggle, most concentrated exertion of my life, . . . relaxed my face, relax relax relax. Won. The attack went away. Peace, blessed relief. Threw the bottle of ergotamine away. The attacks never came back. I am blessed. I am fortunate. They never came back. There were a few times when it seemed like one was starting . . . I just dropped anything that I was doing, ignored anyone that I was with, and relaxed relaxed relaxed. That always worked. To hell with who I was with or what I was doing, this was a life-or-death matter. Oh, the memories come flodding back. I'm 63 now. Haven't had an attack for 30 years. I don't know if my monumental struggle on that one time of that one day had anything to do with the stopping of the attacks, but it does not seem probable that it was just an accidental coincidence, the day of 'the struggle' and 'the end of the attacks'. I don't 'put the idea into a bottle and sell it', I describe it as realistically as I can. If the idea can help one other person, oh that would be so fine. The memories come flooding back. Earl L. Gasner
Earl L. Gasner <>
Waukegan, Illinois USA
Wednesday, September 01, 1999 at 11:15:32 (EDT)

This past weekend I was diagnosed with CH. I have experienced these bad headaches for 10 years. Doctors treated them as sinus related, and had me fooled too. Not until recently (worst episode to date) did I take actions to find out what the hell was going on in my head. When I came accross this web site, I knew I was not alone. I thank you for your suggestions to ease my torture. My heart goes out to my fellow sufferers.
Jay Martin <>
Oklahoma City, OK USA
Wednesday, September 01, 1999 at 11:12:47 (EDT)




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