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guest book

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

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Click Here to go back to the Main Guestbook and post your message or read messages from other months


great site...any info on natural theropy?
robert special <>
mobile, al USA
Monday, August 31, 1998 at 23:00:26 (EDT)

would like to know when the chat room calendar will be available for september. thanks
gerald hays <smithwick@webtv>
marble falls, tx USA
Monday, August 31, 1998 at 21:04:07 (EDT)

What a great site is very helpful
Lance Stanley <>
Sharpsburg, GA USA
Monday, August 31, 1998 at 13:29:21 (EDT)

New to the net (@ age 42), read the entry letter for the site and began to sob. Someone else "knows"the sheer hell. I was diagnosed with Clusters in 1974 and have been through every med therapy available and would gladly give my right arm the the researchers who developed Imitrex. I am a white male age 42, a non drinker, light smoker who deals with slight OCD issues. My headaches are usually annual and begin late January and generally run 8 to 10 weeks. In the 70's & 80's used prednisone, ergotamine heavily until I developed circulation issues with my fingers tips. I have always been a novelty with each neurologist and have never met another cluster patient. Twice have I required hospitilization for chronic episodes. In 1981 four weeks ended at Montifore H/A Clinic in NY and 1995 twelve weeks at nearly the cost of my live, I was ready to die, tours through Duke, UNCA Chapel Hill and Bowman Gray Clinic. Upon first admission was taking 6 Imitrex injections daily on top of med cocktail and fistfulls of pure codine. Morphine pump and ganglion blocks with cocaine could not break the cycle. My neurologist was a good sport and was willing to try any/everything; acupuncture, herbs, yoga, meditation and ti-che. I was finally put to sleep for three days with heavy anti-psyc drugs and the cycle was at least broken. After release I was limited to one imitrex per day and continued with the alternatives and completed an eight week course developed by Jon Cabbot Zin for Pain Management combining yoga & meditation. The hand book is entitled Full Catastrophy Living. My headaches had me absolutely horrified by August of 95 that I sincerely considered ending my life via overdose on imitrex or codine and my family would have assumed it to be an accident. For the first time since 1974 I have "for the most part" skipped three cycles/year. I have tried not to get too excited each of the past three springs for I don't know if they have just stopped or they will return. After 1995 I have learned to be thankful and enyoy each pain free day. I have known that statistically (sp?) there are thousands of other C/H patients, I just never had the opportunity to meet anyone who shared the same hell on earth. Please overlook the spelling and thanks for letting me rattle on. Would love to chat and share sucesses and war stories. Best Regards, Reagan Nelson
T. Reagan Nelson <>
Hartwell, GA USA
Sunday, August 30, 1998 at 21:04:23 (EDT)

Had CH for 10 years. Had every med in the book. Have become more chronic in the last couple years. when they get real bad nothing controls entirley. Everything about these things happens in a bell curve. They started out slow and over time have become more frequent. each cluster starts slow, reaches a peak then slowly receeds. The pain of each headache starts as a pang aside my inner right eye, then grows to moaning intesity and fades slowly away. Until I found all my fellow sufferers on the net I thought I was the only one that... Paced in circles. Chewed medicine in hopes of getting it to my system faster. Pushed sharped objects to the bone of my eye sockets. This really sucks!
Marc Buckman <>
Rochester, NY USA
Sunday, August 30, 1998 at 19:47:32 (EDT)

I have had cluster headaches for 28 years. Hadn't had a cycle for two years and wasn't looking forward to anymore. But about two weeks ago they came back! Just out at a club with my friend, having a couple beers, and I started getting that pain behind my right eye. But I said, no way, they can't be coming back, but they were. Since then, they come in the afternoon or in the middle of the night and last about 30-45 minutes. I started the prednisone regimen, Dr. said 40mg/day for 5 days then taper, but each time I decrease, a CH breaks thru. I hate taking this stuff for any length of time because of the side effects (moonface, puffy feeling). I might ask about the 80mg shot I read about in one of the recent notes to see if it will abort the cycle. He also suggested trying lithium again, but I'd prefer not. A CH also has to come at the most inappropriate times, too. My son's 18th birthday and Navy farewell party was going strong last night, including a live band. I walked home to get another roll of film and it starts! I tried O2 for about 1/2 hour, used nose drops, an ice pack, a cold, pulsing shower, a little crying, lots of pacing, and nothing would work this time. And it got soooo bad it hurt behind my right eye, my nose, into my ear, neck, shoulder and down my arm. Three hours later the CH began to subside (the longest this cycle), but by then the party was over except for the mess left behind! Enough rambling. Thanks for being here. Knowing one is not alone helps alot. Just wish we could all be pain free! Take care, Nancy K
Nancy Kosko <>
Aberdeen, MD USA
Sunday, August 30, 1998 at 17:44:26 (EDT)

Attempting to find out if my symptoms point to cluster headache. First onset about a month ago, while on vacation; no stress involved. Lasted about a week and a half. I am 52 have history of infrequent migraines, perhaps one every two or three months, which Fiorinal ALWAYS resolved in about a half hour, no matter how long migraine had been going on. This time nothing, even Fiorinal, had any effect - except I tried Flexeril, a muscle elaxant I use infrequently for low back pain. I tried it as a last resort and about an hour later headache subsided. Went a couple weeks OK, and my family doctor felt I had a rebound headace from combination of antihistamines and pain relivers. Now it's back, as of two days ago. Occasionally lightens up (never goes away 100%) and even Flexeril dosn't help (maybe was coincidental before?). Tried some hydrocodone left over from my wife, and it seems to mitigate pain fairly well for several hours. SYMPTOMS: (Other than above) All symptoms on right side of head and neck: acute eyeball pain, seems to help a little to press eyeball; pain extends up right corner of forehead, on line up from eye; some less acute pain on right top of skull towards front; less acute pain where skull joins neck on right side; sometimes forehead and eyball pain so intense that stomach feels upset; impression that pulling on head (sorta like traction) seems to momentarily help, accompanied by sharp pops in neck vertebrae; over the counter medicines don't help, althogh some seem to keep me wide awake; at times seems worse to be prone as ooposed to standing or sitting. I guess I should return to GP for further help. Does the above sound like cluster headaches? What treatment is most promsing now, for me to pass on to doctor? Any help much appreciatd.
Michael J. O'Hara <>
Gilbert, AZ USA
Saturday, August 29, 1998 at 10:11:16 (EDT)

Attempting to find out if my symptoms point to cluster headache.
Michael J. O'Hara <>
Gilbert, AZ USA
Saturday, August 29, 1998 at 09:54:31 (EDT)

i deal with this now for about 4 years now , didn't realize there were ppl who are having the same , no one could describe it better then you did on the page ...maybe not nice of me to say but i'm happy i found ppl who are dealing with the same pain we only have to look for something that would eas the pain .....tried the Imitrex which was good but it are mediacls and that one is real expensive here in Belgium cos i would need it everyday ...can someone tells me the expierence with the oxigen ? please .... another one who is dealing with the pain :)
Tony <>
Antwerp, Belgium
Saturday, August 29, 1998 at 09:20:45 (EDT)

I have had cluster episodes since 1984. For the last two years the ha s are chronic, but not with the same intensity of earlier years. Oxygen is sometimes effective. other drugs seem to work for a while, but a year later are ineffective
Julian Fischer <>
Port Clyde, ME USA
Friday, August 28, 1998 at 16:45:10 (EDT)

There are no words to express the relief and sorrow I felt to really know that I was not alone. After 22 years and rootcanals, brainscans etc. (Ergotamine no longer works) Imitrex - thank god - does! Phew! I found this site thru Dr.Kroop and links. You provide a valuable and very worthwhile service. Carry on
Norman Silverman <>
Holon, Israel
Friday, August 28, 1998 at 07:50:18 (EDT)

Has anyone seen a study(European?) linking propensity for CH to eye color, specifically green/hazel ? I found it on the net two years ago during my last bout with CH but didn't save it (thought I was cured!!??!?!?).
Tom Collins <>
Boston, MA USA
Thursday, August 27, 1998 at 13:23:40 (EDT)

Has anyone heard of a study (european?) linking CH propensity to eye color,specifically green/hazel ? I found it two years ago on the net, during my last bout with CH, but did not save it (thought I was cured!?!?!!).
Tom Collins <>
Boston, Ma USA
Thursday, August 27, 1998 at 13:13:47 (EDT)

Thanks for establishing this site. Great resource
Tom Collins <>
Boston, MA USA
Thursday, August 27, 1998 at 12:55:30 (EDT)

Help!! My Dad is severly suffering from these terrible headaches. He has seen several docs, and has tried several meds, nothing is helping. We are looking for a Headache Clinic in NY or NJ. Any help would be greatly appreciated!!! Thank you.
D Dolan <>
Wednesday, August 26, 1998 at 20:28:44 (EDT)

I am looking for help for my Dad, he severely suffers from cluster headaches. The pain is excruciating, he has seen 2 doctors and has been on a few meds, nothing seems to work and the headaches are getting worse, averaging once every day. His doc has now told us to try to find a headache clinic, we live close to NYC, can anyone recommend a great doctor to help??? Thank you.
D Dolan <>
Long Branch, NJ USA
Wednesday, August 26, 1998 at 19:47:52 (EDT)

I just had my first attack which lastest only 7 days - interrupted by the homeopathic remedy 'Spigelia' ( I only took 2 'drops' the night before....). I had suffered for 10 years from migrane and 'normal' headaches and thought that was bad - but cluster headaches are TERRIBLY painful. I tried 4 different homeopathic remedies before we found the right one for me = Spigelia . Thanks to the wonderful information on this site ! - and thanks to people (doctors/ homeopaths...etc.) who are interested in getting people better !
Andrea Sprengel <>
New Canaan, CT USA
Wednesday, August 26, 1998 at 18:12:33 (EDT)

Everyone who suffers with this incredible infliction, HANG IN THERE!!! I have been suffering with CH for 26 years! Every YEAR! HANG IN THERE!
Jay Evans <>
Philadelphia, PA USA
Wednesday, August 26, 1998 at 16:28:06 (EDT)

What a wonderful site for support and info. I have suffered from ch for over thirty years. Currently on prednisone which helps some what. Doc wants to try histimine infusion. I will do anything to stop the pain. It makes me feel better knowing that I am not alone but I would take all the pain so that others would not have to suffer. Hang in there everyone brighter days to follow someday.
John D. <jdye741518@AOL.Com>
Raleigh, NC USA
Wednesday, August 26, 1998 at 14:02:49 (EDT)

chronic cluster headaches w/migraine symptoms. Translation: We know what is wrong with you but we can't fix it. Feeling very frustrated. Anyone else had the "nerve surgery"? Looking into it.
Vanasa McCallister <JMCCALL183>
Wednesday, August 26, 1998 at 08:34:01 (EDT)

I have only just discovered this safe harbor a few weeks ago, thanks to the advice of a fellow cluster sufferer. I call it a safe harbor, because here is the first time and place that I don't have to worry about expressing my pain only to have the listener tell me to go lie down and take an aspirin. I no longer feel alone at night when I'm in the midst of an attack, pacing in circles, wishing I weren't afraid to end it all. I know that when those here say they understand, they REALLY do. I wish the rest of the world did understand these monsters, but until they do, this will be my "rest of the world." I have suffered from cluster attacks for 24 years. I'm not quite sure whether to classify them as chronic or episodic. My doctor has used the term chronic, but I do have intervals without clusters, though the usual interval is a matter of weeks with the longest (once) being one year. ( I sure wish I knew what I did right that one year!) The longest cycle has been three weeks, and this is why I have a tough time fitting them into a catagory. What matters however, is not that they fit in a catagory, but that they have robbed me of so much in these past 24 years. What I could have been and done has been has been robbed, precious moments with my children; taken, faith; diminished, hope; smothered, dignity; tarnished. What keeps me going is the desire to feel what it's like to live without fear of another attack; to make plans without hesitation, to feel what it's like be normal. I feel like the kid who's been waiting in line for her turn on the big ride, only to reach the entrance and be told, "sorry, no more rides." Feeling like this at the age of 45, to some may seem pretty pathetic. But I know that here, I have finally found those who understand. My safe harbor.
Jackie M. <>
Collingswood, NJ USA
Tuesday, August 25, 1998 at 11:36:00 (EDT)

My husband had his first cluster about 10 years ago; we all thought it was a sinus infection. Couple years later had another cycle - again about a week. Then pain free until 1994 when he had one, solitary CH. Now about 2 weeks ago they have returned with a vengeance. Have just been referred to a Neurologist - I hope he can help. These headaches are robbing me of my wonderful husband and my children of their loving father. Some of these messages scare me. The future is unknown. My prayers are with you all who suffer and those who have to watch helplessly.
Pete Cervantes <>
Glendale, AZ USA
Monday, August 24, 1998 at 23:04:07 (EDT)

It has been only in the last couple of years that I have found relief Thank Glaxo for Immitrex.
Michael Saidel <>
Needham, MA USA
Monday, August 24, 1998 at 14:37:24 (EDT)

zomig is working fine for me respecting contraindication is important so with this in mind a great product in my case i appreciate your page
fournier <>
oignies, france
Monday, August 24, 1998 at 08:32:48 (EDT)

I have fought this demon for 24 years, and I notice that the cycle and durations vary from people to people. Mine seem to come every 1 yr to 1 1/2 years, last from 6 to 12 weeks, anywhere from 1 to 4 a day, lasting from 20 minutes to 1 hr in duration. I have not tried oxygen, though I am willing to try nitrous ( grin). I hate shots, so imatrix shots are out. The cafergot or ercaf pills that my dr. has me on seems to work. If I take them when I feel the aura or tightness begin, they seem to abort. If I wait too long, forget it. Then I will take the Lortabs to deal with the pain. The cafergot makes me a bit nauseous, but I will trade that for the pain. Alcohol intensifies the CH, so I am abstaining from drinking until this one is over... I am into my 4th week. This one is on my left side, which I get about 25% of the time. They seem to be somewhat less intensive as the ones on my right side. However, I get a strong tightness to the back of my head when I get them on the left side. People ask me to describe the pain. I can only say that it feels like an Ice pick being shoved through my eye and out my temple. I would like 'to hear from the women who gets clusters and also have had children. I would like to hear their comparison on the pain of a CH and the pain from child birth. Jim
Jim Pacheco <>
oxnard, ca USA
Monday, August 24, 1998 at 01:57:56 (EDT)

I have suffered through my clusters since 1980 (age 18) and have only recently found some relief using ergot based drugs, although I used to respond to others (prednisone, calcium channel blockers). Ergot based drugs seem to stretch out the season, though. Typically, my cluster was 8-12 weeks, but last year it lasted five months. Hoping this year will be better than last. Good luck to you all with your pain and I'll see you at chat. ron
ron schulte <>
denver, co USA
Monday, August 24, 1998 at 01:51:13 (EDT)

I am a 30 year old female who has suffered from cluster head aches since i was 15. I am glad to have found a web page dedicated to cluster Headaches and know there are others out there.
Lauri Romeo <>
Rochester, NY USA
Sunday, August 23, 1998 at 20:37:41 (EDT)

72yr. old. cluster for past 10 yr. male-my clusters are textbook book type- seasonal-3-4 sessions a yr.-clusters not as painful ul now as in the early yrs.-
Eric Palm <>
Burnaby, canada
Saturday, August 22, 1998 at 10:50:31 (EDT)

Thanks for your informative site. I get these left side blasters every-so-often, feels like someone pushing an ice- pick through from the base of my skull and out My left eye, real fun. I control mine with My diet. Thanks again!!!!!
Kenneth A. Crips <>
Cheyenne, wy USA
Friday, August 21, 1998 at 14:53:54 (EDT)

What a wonderful site. My husband has suffered with these god awful headaches for the last 13 years. As with most of you it did take a while to find out what these were. Visited doctors, dentists, ear nose & throat specialist, tried acupunture, etc. etc. Until we discovered the New England Center for Headaches. If you live in the New England Area -- this is the place you need to go to. My husband is a chronic cluster suffer on a daily regime of depakote, cagerfot and verapmil which helps most of the time. We have oxygen everywhere -- the supplier says we are their biggest customer outside of hospitals & nursing homes. Oxygen helps if taken early in attack. About twice a year he gets them worse than normal (which is hard to believe). Goes on steroid therapy for about three weeks -- this usually always works. It's very frustrating -- everyone always thinks you should be doing more -- seeing more doctors, going to the emergency rooms, etc. etc. No one understands these headaches -- Usually you have tried every avenue, visted every specialist, had cat scans, mri, read every article, spent hours in the libray, tried every remedy suggested --no matter how ridiculous. NO ONE SHOULD HAVE TO SUFFER THIS KIND OF PAIN. Thank you for this site -- it's a wonderful thing.
Friday, August 21, 1998 at 08:14:59 (EDT)

My 2 year old son has been diagnosed with cluster headaches and I would like to get as much information as possible about this condition especially in young children.
Katie Maret <>
Post Falls, ID USA
Thursday, August 20, 1998 at 21:49:38 (EDT)

Will be going to the Cleveland Clinic tomorrow to deal with a ferocious, prolonged bout with clusters. Will share this site with doctors. Have been taking Indomethicin to "control" attacks and initially Prednisone to stop the killer ones. Chronic for 4 years. Oxygen did nothing.
Paul Rolland <>
Cleveland, Oh USA
Thursday, August 20, 1998 at 20:30:28 (EDT)

It's quite reassuring to have found a website like this. My visits to doctors have always resulted in dismissive responses to this (depressing) condition, so I'm hoping that exchanges of ideas on diet, remedies, alternative medicine etc. on this site will give some solutions to the problem. I've been suffering for 10 years with clusters and I'm fed up!
Mark Winter <>
London, United Kingdom
Thursday, August 20, 1998 at 17:00:58 (EDT)

It's quite reassuring to have found a website like this. My visits to doctors have always resulted in dismissive responses to this (depressing) condition, so I'm hoping that exchanges of ideas on diet, remedies, alternative medicine etc. on this site will give some solutions to the problem. I've benn suffering for 10 years with clusters and I'm fed up!
Mark Winter <>
London, United Kingdom
Thursday, August 20, 1998 at 17:00:28 (EDT)

I'm happy to see that this site exists.
steve witkowski <>
Thursday, August 20, 1998 at 09:48:22 (EDT)

Ihave been having a migrain for about 3 mounths.It will last for last for a week or so and go away but in 2 or 3 days its back.Idon't take any med, for them Ihave tryed about everything.And sometimes whin I go to the doc. it's like they don't even belve me. thank-you. Renee
Guild, Tn USA
Wednesday, August 19, 1998 at 19:55:52 (EDT)

My husband suffers terribly from cluster headaches. I would appreciate any suggestions that anyone might have for us to try.
Judy Seiders <>
Halsey, OR USA
Wednesday, August 19, 1998 at 15:28:45 (EDT)

Chronic cluster headache sufferer.
allvin <>
Waterbury, CT USA
Wednesday, August 19, 1998 at 12:29:31 (EDT)

nashville, tn USA
Wednesday, August 19, 1998 at 06:10:02 (EDT)

Wow,I a not alone,I will be back to this site for sure.After a two year remission y clusters have returned with a vengance.Luckily Imitrix shots give me relief,from the two or three episodes that I am having daily.God bless us all! Thank you for being here.
terry karbler <>
boise, id USA
Tuesday, August 18, 1998 at 10:00:32 (EDT)

Age 45, had clusters since I was 14.
Steve O'Keefe <>
St. Pete, FL USA
Monday, August 17, 1998 at 12:53:45 (EDT)

I am a twenty-eight year old female who suffers from clusters and migraine headache. I have lived with them for approx. nine years. I would really like to talk to someone, anyone who can identify.
Lourdes Rodriguez <Traices@Aol.Com>
Oldbridge, N.J. USA
Sunday, August 16, 1998 at 22:19:36 (EDT)

I suffererd for over 20 years w/clusters until a great doctor realized what was wrong. oxygen is the only thing that works. Thanks for the web site!!!!!!
Joe Carrig <JCARRIG444@AOL.COM>
Sunday, August 16, 1998 at 18:54:27 (EDT)

I am 56 years old, and suffered from the dreaded for 15 years, or until 1986. I have been headache free from that time to just three weekw ago. My God could this be for real after all this period. The ache began just 15 days after we sold our business, and I was about to retire, or atleast enjoy my life stye. What reallyamazed me is the basic still lack of knowledge by the general medical proffession. I called a pain center that had a MD who specialized in headaches, and the response was an appointment for Sept 15, 1998. Told me that they didn't know what they were dealing with. Went back to Chicago, where I doctored for 10 years. Biggest problem that I see is lack of medical knowledge in the profession, and that is why I have always been a supported of the "National Headache Foundation. The other problem is the lack of "Support Groups" in most areas. Part of the best therpy is to know you are not alone, and probably not the worse off.
Jim Howser <>
Afton, Ok USA
Saturday, August 15, 1998 at 20:12:33 (EDT)

I am 34 years old and have suffered from an extreme form of clusters for about 10 years. I get everything from a light bothersome pain all the way to the point of rolling around on the floor and beating my head against walls, tables or anything else I can find. true enough nothing works. It is of GREAT comfort read and here about others who actually understand what I am taking about and going through. Back in 1994 I had so many every night and the level of pain was more sever than ALL the illness's and broken bones etc. that I have ever had in my entire life all put together. This lasted for 4 months straight and I finally could not take anymore so one night in sever pain (and crying my eyes out) I put a hand gun to my head and was going to end these horrible headaches once and for all. But luckly common sense (and my wife) somehow prevailed. In the last years I have learned to adjust my life around this stealer of sleep and sanity. Maybe someday someone will at the very least come up with some type of relief that actually works.
Bob Esper <>
Clinton Two, MI USA
Saturday, August 15, 1998 at 08:08:14 (EDT)

I am 34 years old and have suffered from an extreme form of clusters for about 10 years. I get everything from a light bothersome pain all the way to the point of rolling around on the floor and beating my head against waals, tables or anything else I can find. true enough nothing works. It is of GREAT comfort read and here about others who actually understand what I am taking abou and going through. Back in 1994 I had so many every night and the level of pain was more sever than ALL the illness's and broken bones etc. that I have ever had in my entire life all put together. This lasted for 4 months straight and I finally could not take anymore so one night I in sever pain (and crying my eyes out) I put a hand gun to my head and was going to end these horrible headaches once and for all. But luckly common sense (and my wife) somehow prevailed. In the last years I have learned to adjust my life around this stealer of sleep and sanity. Maybe someday someone will at the very least come up with some type of relief that actually works.
Bob Esper <>
Clinton Two, MI USA
Saturday, August 15, 1998 at 08:02:35 (EDT)

a question regarding the nasal spray imitrex 20mg. sometimes i have bouts of ch in which I have 3-4 headaches a night. does anyone use 3 to 4 application of imitrex 20 mg in a 24 hour period. and if so, is there any side effects to be concerned with. also has anyone tried prozac for the seratonin ingredent, and has it helped. thank you bmk
Bruce M. Karst <>
ojai, ca USA
Friday, August 14, 1998 at 22:18:06 (EDT)

A 47 year old cluster sufferer with week long bouts occurring every 3-4 months. In the last couple of years, I have noticed the headaches are a little less frequent but more intense. Optimistically, I take the changes to indicate I might be growing out of them.
Bruce Battenfield <>
Topeka, KS USA
Friday, August 14, 1998 at 16:10:46 (EDT)

I am 38 years old and am a Cluster sufferer. So far, my trial and errors have as yet to pay off. But, to date I get the best results using CYPROHEPTADINE. I have been going through bouts of clusters for 10 years now. I've just begun another series about a week ago. ON the 13th of Aug., I started taking CYPROHEPTADINE. Last night was my fist night with relief. THANK GOD.
Darrell <>
Ripley, Tn USA
Friday, August 14, 1998 at 12:18:29 (EDT)

I am pleased the net (and your site) offers the opportunity to exchange experiences with other clusterfans. Does anybody ever say something nice about cluster headache? Like what a wonderful relief it is when an attack has passed and you know the next hour will be pure bliss. Like you are a member of a very exclusive club (who wants to join anyway?) who knows of pain like nobody else. We all are the real heroes of our time, silently suffering for the rest of mankind. Why not open a sub-site with "the lighter side of ...? Are there any cluster jokes going around?
Bert de Groot
Woerden , Netherlands
Friday, August 14, 1998 at 10:46:42 (EDT)

I was amazed at the amount of people that have logged on here. That just makes me all the more mad at why doctors haven't found a cure for us...this is more common than I thought...of course, they don't even know why we get c/h. I have been getting them for about sixteen yrs. I am a 38 yr. old first I just got them every-other year in the summer (May-Sept.). Then 3 yrs. ago, it became every year. I have been through all the drugs, even had a root-canal at first, thinking that's what was causing the pain. Oxygen never helped me. Always used to go to emergency room for shot of demerol, or even morphine. Since Imitrex came out, my life has gotten a bit better. It's still a major pain to wake up in the middle of the night (mine usually hit at 1am then sometimes again around 5-7am) and give yourself a shot. But it really helps. But the feeling I get from the Imitrex is really weird. Very heavy pressure. I just started accupuncture...have only had two treatments so far. Can't really tell much of a difference yet. Am hoping it will work. Does anyone know about melatonin as a way to stop the cluster headaches? I just got some and will try that tonight. Dr. usually prescribes Sansert with Prednisone, but I hate the way that makes me feel and I'm trying to get through this phase without it. If we all make enough noise, maybe the medical community will pay attention and develop a cure, or at least figure out why these happen. Good luck to fellow c/h warriors!
Laura Hausman
Cleveland, OH USA
Thursday, August 13, 1998 at 20:54:08 (EDT)

I have had CH's for about eight years. I am glad to see that some research is being done.
Charlie Berry <>
Montreal, QC Canada
Thursday, August 13, 1998 at 17:20:59 (EDT)

It is comforting to know that others suffer and understand that these are not "migraines". I have been suffering for 9 years. The nightly routine can be horrific and the only thing that works for me is Tylenol with Codeine #3. I have tried Lithium and a few others including Snadol. Thanks for the site and the concern.
Chris Bonacore <>
Sayville, NY USA
Thursday, August 13, 1998 at 15:11:53 (EDT)

I'm 60 years old and have suffered with Clusters for the past 13 years. Current list of drugs (which constrict) blood vessels) are of no help. This is because I had open heart surgery in 1993. Before heart surgery, I was on the "heavy stuff" self injected DH-45, no more that 6 per week, no more than 1 in 24 hour period. DH-45 would stop a Cluster dead in its tracks, but then, I would have another one or two in the same 24-hr period. Currently, have two cluster periods, three months in winter and three months in summer. Over these 13 years I've had three saviors: first, Dr. Catherine A. Madison (then an Air Force Major at the Air Force's Hospital, Andrews Air Force Base in Maryland just out side of Wash D.C.; the medical staff of Chicago's Dimond Headache Clinic, especially Dr. Frank Freitag; and currently Dr. Paul K. Winner in West Palm Beach, Florida. Hang in there my friends, "John Wayne and the 7th Calvary are coming to the rescue over the next hill". You have to believe it, don't give up!!!!
Roy M. Williamson <>
Winter Haven, FL USA
Thursday, August 13, 1998 at 11:36:41 (EDT)

I have suffered from CH attacks for 28 yrs but the Drs. can't do anything to control mine. It a relief to know I'm not alone. Still I'm saddened that so many people have to deal with such pain. I have lost my last 6 jobs to this illness even tho all my employers knew of the situation before they hired me. I have taken every drug know and every potion I can find. Its a comfort to find a Dr. that eeill listen and at least try to relieve the pain but they are far and few between. To all the sufferers I hope you will continue to fight the pain and don't let it control your life. Enjoy every precious moment to can that your not under attack.
Sundi Mounts <Sundiwitch>
Oak Ridge , Tn USA
Thursday, August 13, 1998 at 11:27:14 (EDT)

I appreciate having found your web site as well as the CH Homepage which linked to yours. I have been plagued by these headaches since about the age of 28 (I am 49 now). The precipitant(s) seems to be associated with the presence of 'depressogenic' stressors in my life. Not just stress - which I can deal with by using autogenic/self-hypnotic techniques but life turning points that include defeating or discouraging events, decisions etc. The headaches have returned about every six to eight years and have corresponded with those sorts of events. So,of course, it 'seems' causal, but who knows? When I first tried to figure out treatment for these back in 1978/9 I found an equally ignorant internist at Kaiser in Cleveland who explored the problem with me. We tried demerol first - didn't touch the pain but made me less concerned about it! Then we tried Oxygen which DID work - and has since. Except for its inconvenience and cost, it's a pretty good solution for me. This time, however, I tried cool/cold air based both upon the article on this topic available on the CH Homepage and my observation that sitting in front of the airconditioner (the evening before I read the article) helped prevent one from getting worse. Thus, last night, both during the evening and in the morning (5 a.m.), I just pressed my head against the AC output and chilled my head and breathed cold air. Worked well as or better than the Oxygen. Also, sleeping in the very chilled room (my wife stayed in the somewhat warmer bedroom!) seemed to forstall the onset of the a.m. episode insofar as they more typically occur around 1 to 2 a.m. for me, not 5 a.m. But who knows.... I'll continue to experiment. In addition, I'm not too sure about the role of exercise. Some say it can prevent the onset if it is vigorous... for others, it appears to precipitate an episode. Because I had been working out regularly (in my general weight loss program) prior to the onset of this bout (one week ago), I will again start to work out at lunch today. I'll try to evaluate this scientifically (as much as possible) and provide a sample of (1) for the record. In any case, I am glad that this site (and the CH homepage site) exist). It was much lonelier back in '79. I should also note, that there is some interesting demographic data being compiled on the CH Homepage ( that other readers might find interesting. Anyway, thanks and good luck to you all in controlling the pain. R. Welser,Ph.D. Clinical Neuropsychologist
Richard Welser <>
Morganton, NC USA
Thursday, August 13, 1998 at 09:07:11 (EDT)

I started with my my first episode about 23 years ago, after I had my baby, it lasted about 5 weeks and left me will the feeling of having a hole in my head. I was free for about 5 years, then it happened again and lasted longer, about 7 weeks. Since then about every 4-6 years they return. The length and severity has lessened over the years, and I have gotten some relief with the Chiropractor, with massage and pressure points. Idid go to the headache clinic at Montefiore Hospital in The Bronx, NY (where I'm from) and the doctor suggested diet. Red wines, cheese, chocolate are all no, nos....and increase my potassium (bananas). I try to do this because I still suffer from migrains too and these foods to contribute to them.....As for medicine, I found Sinus medication, i.e. Sinaide, and Excedrine are the only things that really help (and of course, sleep...) I have been taking all sorts of vitamins over the years too and I really think what I take has helped somewhat, I'm 46 now and relativly head ache free......
Yorktown Hts., NY USA
Wednesday, August 12, 1998 at 23:05:52 (EDT)

I've been suffering from CH since I was 17. Now I am 43. Believe me, I know it's not a bed of roses. Reading this site, I first didn't believe my eyes. Knowing there where many like me, but not as many as this just in the States, or what? My clusters appear every second year and keeps on for about 9-10 weeks. I,ve just suffered trough the latest one which longed for 9 long, sucking weeks. Another dark hole in my life. Still, there's nobody more lifeloving or positive than a CH-er feeling life is coming back Hang in there, brothers (and sisters) of pain! Someday..... Tommy W
Tommy Wiren <>
karlshamn, blekinge sweden
Wednesday, August 12, 1998 at 22:23:37 (EDT)

I've suffered from these frigging headaches for 30 years. I guess it helps to know I'm not the only one.
Todd Nicholl <>
Sheffield Lake, Oh USA
Wednesday, August 12, 1998 at 21:52:21 (EDT)

Can someone give me some information about using pure oxygen to treat CH? Will it help for a longer period? I started this one week ago and I must say it helps me sofar, the pain will leave within 5 minutes. Does someone know what caused CH, is it food or something else? Please let me know if you have any information. Thanks, Jaap
Jaap ten Napel <>
Groningen, The NetherlandsUSA
Wednesday, August 12, 1998 at 06:47:35 (EDT)

I am in my late 20's and have been suffering from clusters for about nine years, and was amazed when I found this website. I never thought anyone would or could understand about the pain these headaches are to me. It's like reading my thoughts when I read this page.
Tommy Edmiston <>
Hartselle, AL USA
Tuesday, August 11, 1998 at 18:47:21 (EDT)

I've suffered from headaches for 12 years now and after seeing many doctors over the years, today is the first time a docotor has diagnosed Cluster Headaches. I suffer from most of the symptons described in these pages but my headaches are always during the day and usually appear around later morning (10am). Occasionally they feel in the 'background' when I wake in the morning but sometimes there is no sign at all and then they appear quite quickly at the usual time. Sometimes they 'linger' on and off and I've found that spending time peacefully alone with head in hands (usually sneaking off to the toliet!) can prevent a headache getting 'hold'. Alcohol gurantees a headache in the evening during a bout but I will usually get a headache after exercise (not many others have mentioned this here) and I think laughing or talking a lot. There is a hint of a jaw problem with as eating or chewing seems to bring one on and my jaw feels tight on one side but I think this is a symptom not a cause. Interesting to read about stress here as we so often get told it's the cause by I now know that it is a precipitating factor not the underlying cause.
Simon Tully <>
Manchester, XX UK
Tuesday, August 11, 1998 at 18:33:05 (EDT)

First, I want to say it is great to find this site and know that I am really not alone in this as I thought. My Cluster Headaches (CH) exhibit a terrible, sharp, burning, pulsating pain starting behind the right eye and moving to the whole right side of the head before subsiding. I seldom get them during the day but during the effected period can feel the stuffiness, slight burning and lingering heaviness on the effected side almost all day long. The major pain for me lasts about a half hour when I am awakened about 2 hours after going to sleep almost every night during the period. It really makes it a scary thing to go to sleep at night. I am a fairly optimistic (look at the bright side of things) kinda guy, but for one or two months out of the year it is really hard to stay positive. I feel like a different person during this period, terrified to sleep and living in fear of this monster residing in my head. I could not even imagine having these things chronically as knowing that they will go away in a month or two is sometimes the only thing that gets me through it. For years I attributed them to stress or nerves but with what I have learned in the past year, I do not feel these to be the culprits. I do not really remember getting medical treatment until the last 3 years and until last year (now with the info on the net) did not even hear about a CH. I did discuss it with my doctor last year after an MRI revealed nothing, but by the time we diagnosed CH the period had subsided. I have had them this year for about 3 weeks now. The first two were fairly mild, with light bouts 2 or 3 times day, but for the last week I have had a screamer every night and the lingering feeling all but an hour or two a day. I now have an appointment with my doctor in two days and will bring the info I have found on the net to him and insist on trying something from what I have found. Wish me luck and best to anyone else with these terrible things. Thanks again for the site. Bill
Bill Herbstritt <>
Erie, PA USA
Tuesday, August 11, 1998 at 14:36:08 (EDT)

I am suffering clusterheadache for many years and the treatment I got is to inhale 100% of oxygen, this will take away the pain within 5 minutes or less.
Jaap ten Napel <>
Groningen, The Netherlands
Tuesday, August 11, 1998 at 07:28:51 (EDT)

I am a white male of 33 years and have suffered CH since approximately 1989. I distinctly remember the very first attack for obvious reasons. I feel lucky when I'm not in a cluster phase and life is really really good. However, I'm currently in a cluster phase and I'm afraid to sleep. Like others, I have tried numerous drugs with some success. I have noticed a definite trend in when I start a cluster phase. The phases start after a stressful period of work or other and I am trying to relax. Often this occurs while on vacation when the headaches are definitely not welcome. Besides alchohol that always initiates a headache during a phase (not at other times though) several other factors can initiate including resting in any position other than flat on my back (my neck cannot be inclined) and some food additives such as MSG (which is in everything). My currrent relief and preventative is a combination of maximum strength sinus headache medicine and BC or Goodies maximum strength headaches powders. The BC powders are fast acting and very effective if the headache can be caught in the first few moments. Consequently I have some with me at nearly all times and actually stress if I am not prepared. I was wondering if anyone has tried non-western medicinal treatments such as Chines e acupuncture or other. If so, please let me know. Good luck to everyone. Tom
Tom Smith <>
Raleigh, NC USA
Sunday, August 09, 1998 at 23:20:48 (EDT)

At the moment its the night times that are bad for me.Not so bad at least i can go to work!Hi to every one,with the demon in the head.
Rob <>
Surrey, UK
Saturday, August 08, 1998 at 16:47:26 (EDT)

Never thought that a web site would bring me to tears. I have suffered with CH for 17 years and have never met another person that has this problem. It is so frustrating trying to explain the pain to doctors, family, employers. I hate that everyone here has to endure the pain that I know but it is comforting to finally know that I am not alone. A special thank-you to the host of this web site.
Bill Morgan <>
Saturday, August 08, 1998 at 00:36:28 (EDT)

suffered for 18 years.NO cure yet.59 years old.
william donoahue <>
shelburne, ont ca
Friday, August 07, 1998 at 21:50:49 (EDT)

Verapimil is really working for me, but it may just be a remission period. I'd like to visit again but first I'll read all the stuff above and see if my other symptoms are there too. O, and I'm a minority: a female.
Annemarie <>
Friday, August 07, 1998 at 17:14:15 (EDT)

I will be checking in for new updates on coping with the pain and is there any thing that can be done to help prevent CH's from being as intense.
Doug Hendricks <>
Jacksonville, FL USA
Friday, August 07, 1998 at 09:28:23 (EDT)

Howdy Folks; This week after several years of attacks of "Sinus infection" I was diagonosed as having Cluster Headaches. Yesterday, following some of the advice found here, I got Feverfew and Excedrin. My usual early evening attack, didn't . It's now 01:00 and the devil is attempting to drill a hole where my wisdom tooth used to be. I felt this coming and got 2 excedrin in me and it's bearable, sort've. Thanks all, I'm sorry others have to suffer with this, glad I'm not alone.
Alan Payzant <>
Calgary, ab Can.
Friday, August 07, 1998 at 03:23:04 (EDT)

I,m with you all...I've had CHs for 23 years but they have actually gotten less frequent over the past 7- 10 years. I'm right now in a episode and taking Imitrex. It works pretty well. The biggest thing, although extemely hard to do, is to remain calm when a headache is coming. The Imitrex does work better when I relaxed. I also found that putting my hands in ice water, does help but it must be done intermittenly. Pure O2 also helps. I guess while I'm at it, anyone that smokes, must quit! There is definitely a link. I believe, for some crazy reason, that the contents of a cigarette causes an allergic reaction that remains with you. My doctor, at my suggestion, started me on Allegra (sp) and it does help reducel the severity. Add it all up, and the CHs, although still gasly, are becoming more manageable as I get older. I'm certainly gratified to know that others are out there. It's truly Hell on Earth at times. Take Care...
Tom Burgett <>
Lincoln, NE USA
Thursday, August 06, 1998 at 22:15:34 (EDT)

Thank you. I got emotional just knowing that there are people out there that can relate to what I've experienced.
Don Huse <>
San Jose, CA USA
Thursday, August 06, 1998 at 19:46:22 (EDT)

I just found this website and I'm glad to see that there is a place for C/H sufferers to communicate. I've been dealing with these "demons" for about twelve years now and I can sympathize with all of you. Although I'm not currently in a C/H cycle, the thought of the next bout is never far from my mind. I have tried most every kind of treatment that I have read about on here and I have found that Imitrex seems to work the best for me. If you haven't tried it yet I highly recomend it. Good luck to all of you and may it pass quickly.
James Ham <>
St. Louis, Mo. USA
Thursday, August 06, 1998 at 19:08:47 (EDT)

Pain...Pain..go away!! And Just don't come back! Here is a question for all you Experienced C/H people. I have had these fun things for ten+ years...and have tried everything under the sun. Real fun as you know! But the real fun part is that these guys are getting Worse and worse as the years go. More Attacks and much stronger each year. To be concerned or not concerned is the question???? THANKS and hang in there everyone
John Olaes <>
Worcester , Ma USA
Thursday, August 06, 1998 at 17:17:48 (EDT)

I have had CH's for 10 years. I have gone through doctors, allergists, cat scans, and then finally neurologists to finally figure out what I am suffering with. I have chronic clusters, they never seem to go away for any great length of time (maybe 2 months at best after prednisone). It's great there is a resource out here to look for other treatment that my doctor doesn't seem to mention. I wish this pain on no one, but it is nice to see I am not crazy or alone. Chris.
chris <>
mn USA
Thursday, August 06, 1998 at 15:44:00 (EDT)

I'm bored. Can someone please talk to me. Thanks
Thursday, August 06, 1998 at 06:51:49 (EDT)

Thank God for you guys. I have had these headaches since 93. I am a student at WPI and these headaches were killing me and my grades. I spend the entire time during these headaches curled into fetal position with tears running down my face in the most excruciating pain of my life. I am no stranger to pain, I was a serious athlete and played half of a rugby season with 6 broken ribs without caring, but these headaches are on another level altogether. So I curl up and put a tape of my favorite Law and Order episodes in the VCR with the TV off and the sound on in an unlit room and suffer. The doctor diagnosed these as sinus headaches??? But he said he would be "nice" and give me prescription to Advil, great help that did. I kept going to him and telling him how excruciating these headaches were and asking for more help. He finally stated, curtly "just take the Advil and gut it out!" Regrettably it wasn't until this last fall that this mistake was remedied. I got hit by one of by really big ones and was totally incapacitated, my girlfriend was seeing this for the first time and got scared. She dragged me to the hospital where I told the doctor that it had been diagnosed as a sinus condition. He looked me dead in the face and told me "Any doctor that told you that, is an idiot." He told me what they were (Episodic Atypical Cluster Headache Syndrome). The atypical is for the fact that my headaches are abnormally long, normally 2 hours or more with a record of 18 hours. I started treatment the next day. Imitrex regrettably doesn't do anything for me, so I am on Lithium, and have Stadol as an abortive treatment. It works ok, but the most important thing is that I now know that the headaches WILL go away. The timing of the diagnosis was great because I have progressed to Chronic Atypical Cluster Headache Syndrome, so now I don't get a break anymore, but the medication helps. Now I get about two headaches a week, for about 2 hours each. This is down from 3 to 5 headaches a day, for 2 to 4 hours a piece. Don't take this wrong but I am glad to find other people who know how excruciating these are and know what I am going through. Thank you, and good luck.
Ian Greene <>
worcester, ma USA
Wednesday, August 05, 1998 at 19:41:34 (EDT)

Dave Ros <>
Denver, PA USA
Wednesday, August 05, 1998 at 14:36:11 (EDT)

I am having a session right now so your comments and suggestions are appreciated!
Aki Peterson <>
Ithaca, NY USA
Wednesday, August 05, 1998 at 14:27:04 (EDT)

I was diagnosed in 1986, at the age of 41. I was fortunate enough to not have another episode until 1994: this bout lasted about 4 months. I have just entered my third round: started on July 12. I went on vacation a week later and had a particularly bad attack while in Vancouver, BC. Went to a drop-in clinic to seek some relief. The doctor there thought I was looking for some free drugs and suggested that I quit taking any and all medications because I was suffering withdrawal. Needless to say, this didn't impress me! I am back home again, and have been waking up the past two nights at 2:00 a.m. and again around 5:00 - 6:00 a.m. I usually end up with the heel of my palm pressed into my right eye, rocking back and forth. This obviously does not impress my husband who is usually sound asleep. I agree that someone who does not have clusters can understand the pain that one causes. I'm glad I found this site, even though it is too bad that so many of us must suffer this debilitating pain. Cheers!
Bobbie Phillips <>
Terrace, BC Canada
Wednesday, August 05, 1998 at 13:24:51 (EDT)

I've been a sufferer for over 20 years!
Cate Roberts <>
Houston, TX USA
Wednesday, August 05, 1998 at 11:31:29 (EDT)

Hi ya'll. I've had clusters for close to 15 years. My season (lucky me) is this fall 1998. Hey, but do you notice, even at the worst of times, the sun still shines, each and every day!!! Hang in there, help is hopefully on the way :) Maria
Maria McDermott <>
Philadelphia, PA USA
Tuesday, August 04, 1998 at 18:28:49 (EDT)

Hello all. I signed the book a couple of months ago during a bout with CH. Thru this page I was able to take alot of info to my Doctor. Luckily he was willing to work with me and try NEW, to me, treatments. Verapamil and Imitrex shots worked this time. Hope it will on the next, and the next, well you know. Thanks to all and heres wishing everyone a pain free life. Praying for all.
DeWayne <>
Coeur d,Alene, ID USA
Tuesday, August 04, 1998 at 02:34:50 (EDT)

James DeMasi <Jersey>
little river, sc USA
Monday, August 03, 1998 at 13:34:34 (EDT)

Glad I found this web site! Thanks for your efforts.
Debra Kardum <>
mentor, oh USA
Sunday, August 02, 1998 at 22:26:59 (EDT)

I have been living the last 9 years with these horrific headaches. No matter how many doctors I see, they tell me there is no cure. I only can live with them and optain some releif with Statol, Vicodan, and other narcotics. I have all my windows "blacked out" so no light will shine in. I will be in touch with u soon - It is nice and a relief that there is this web page.
Thomas E. Clay Jr. <>
Crestwood, KY USA
Sunday, August 02, 1998 at 22:03:30 (EDT)

I greatly appreciate this site!
Jackie Naiditch <>
Los Angeles, CA USA
Sunday, August 02, 1998 at 20:45:33 (EDT)

I have been suffering these for the last 30 years.
Larry Johnson <>
Chicago, Il USA
Saturday, August 01, 1998 at 20:55:38 (EDT)

I am a 41 yo male who has had non-chronic cluster headaches since 18 yo. Diagnosis was in 1985, Navy doctors earlier said it was "nothing, sinuses,blah,blah...". Tried Sansert, Verapimil with no success. Prednisone worked well for awhile but I am currently in a cycle and am not getting the normal results from the Prednisone. Headaches are lasting 4-5 hours with longggg hangovers. I am going to a neurologist on 8/3 (1st time).
Robin Reiselman <>
Bremerton, WA USA
Saturday, August 01, 1998 at 18:02:56 (EDT)

What a wonderful site! Its wonderful to be able to access pure, unadultered cluster info. As a healthcare worker myself, I am so frustrated that fellow physicians and nurses do not have a basic notion on what a cluster is. I do not want to educate them when I am dying in pain! Thanks for supporting me by knowing I am not alone. I have had chronic clusters for 10months and definitely need all the support I can find! Thanks!!!
irene <>
Saturday, August 01, 1998 at 17:58:41 (EDT)

Just very glad to know that I am not alone... but sorry that there are others that have to share in this horrific, unexplainable pain!
Douglas A. Coggeshall <>
Hinsdale, IL USA
Saturday, August 01, 1998 at 11:05:13 (EDT)





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