Cluster Headaches - Guest Book

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 July 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

I have had "a" headache for over 10 years now. I have every type and clusters are one of them. Everytime I think I can't take anymore, I get another one. It will be good to talk to others like me.
Sherry <lhummer@csonline.net>
PA USA
Saturday, July 31, 1999 at 11:17:41 (EDT)
Chronic CH for 3.5 yrs. The last 6 wks. have been great...Just finishing another Prednisone taper...Not looking forward to the return of pain on a regular basis again...Hang in there clusterheads!!!!!!!!!!
Andrew Schwinn <andrews@networksplus.net>
Topeka, Ks USA
Saturday, July 31, 1999 at 04:40:42 (EDT)
thought that i had already signed in
THOMAS BRANCYK <tomp38@earthlink.net>
san jose, ca USA
Friday, July 30, 1999 at 23:14:30 (EDT)
Recently the plane I was on had to land because I was suffering from a terrible pain in the head. The medical persons who happened to be on the plane thought it could be a hemmorage in the brain, and on arriving at the gate I was rushed to the nearest hospital. There I was put on the heart monitor and the doctor decided to have a CT-scan taken. Nothing showed up, however in the meantime I had two more attacks. Upon arriving backin my country all sorts of diagnoses were made, until I had to get some medication for a colleague and the general physician asked me about the pain I had suffered from. I explained and told him I thought I would die. He told me to have a neurologist check for the condition and I will. Until I know for sure I wish all of you all the best, and might the diagnose be confirmative than I know that I am not the only one.
Ralf Steenmetz <ralf_steenmetz@hotmail.com>
Maastricht, USA
Friday, July 30, 1999 at 14:52:28 (EDT)
Ive been going through these for aprox 15 years now. I used to find a little comfort from talking with others in my family who suffured migraines, but about a decade ago it became obvious that what they experianced did'nt compare. I thought I was all alone in my own little hell. Its been at least five years since Ive even tried to to find words describeing what happens to me, there simply are none. It's as if reality expands into realm that even I cannot comprehend unless I am there. Ive only just found this site, but have noticed almost all the writings are done while in the midst of these demons. I have been free for almost a year now, for no apparent reason. I know one day, far to soon they will be back again.. They always come back! Im writing this I guess just to add my voice and name to the group, for being alone with this demon is truly the worst pain of all! I am truly sorry for all you out there that live with this, I may not have the words, but I know the reality. I would never wish this upon anyone. You are all the bravest survivors, of the cruelest invisible torturer. At least I've finally found others, who know what Ive known. Feel what Ive felt, and will again one day not near far enough away..... At least for the first time in years upon years, I don't feel quite so all alone. Dave, Cypress, California, USA.
Dave Greaves <wildsuns@earthlink.com>
Cypress, CA USA
Friday, July 30, 1999 at 01:08:25 (EDT)
I've been scanning this wonderful sight for info and ideas for months now but haven't posted anything. Decided I at least needed to say Thanks! to all of you who make this site what it is - the best source of information and support for people with CH! My experience with CH has been unusual, compared to the vast majority of what I've read on this site. For one, I was fortunate enough to live the first 40 years of my life without knowing the pain and suffering associated with CH. That all changed on Jan. 14 of this year. I am also fortunate that it only took about 3 weeks after my first vist to the GP before the attacks were properly diagnosed and appropriate preventive treatments were prescribed. My attack symptoms are almost an exact match with what's in the literature. I am a "dancer" during attacks. Whenever I sit or lie down it just intensifies the pain. I would have had my wife take me to the emergency room a couple times, but sitting or lying in the car was unthinkable. On the Kip Scale, I had 1 or 2 "10"s a day for about 2 weeks. I call them "9"s on my scale, because I did not pass out and these attacks have given me a whole new perspective on pain levels. There may be an attack sometime with a little higher pain level from which I would certainly pass out. For preventives, my GP gave me a burst of prednisone followed by a tapered dosage for 1 week and 240mg verapamil. The prednisone stopped the attacks, only to have them return with a vengence as the prednisone was reduced. Verapamil was very effective initially, but we have had to increase the dosage over time to maintain control of the attacks. In the last several weeks, 360mg/day verapamil allows heavy shadows every evening and a few "5"s and "6"s to sneak through. Went to a neurologist last week. Now I take lithium along with the verapamil. Haven't noticed much difference yet, other than the lithium side effects. Still heavy shadows and an occasional mild attack. My fear is that the meds may gradually become ineffective over time. Had hoped that I was episodic and it would be gone in a few months, but now it's been over 7 months. Pain Free Days to all!
Brad Strangways <symm@mindspring.com>
Arab, AL USA
Thursday, July 29, 1999 at 19:58:19 (EDT)
I suffered from "my little friend" for too many years to remember. However, I have not had an episode for over three years now and would like to offer you my final days with the cluster headache. Perhaps this will help you too. After trying every trick on the medical shelf (I'm 6'3" 280lbs thanks to pred) I surrounded myself with oxygen cylinders and the second of onset, I would inhale nothing but oxygen at 5LPM (Liters Per Minute) till the occurance was gone. The hardest part was trusting the oxygen and leaving the mask on instead of taking the pred. For six months I was never without oxygen. If I even suspected an event was comming, on with the oxygen. I even occasionally took oxygen as a precautionary event. Within three months of the oxygen treatments, my attacks were down to two or three. I have NOT had an attack for three years now. I'm writing this because I've been there. If you haven't tried pure oxygen at 5lpm (with the mask), DO IT.
John Martin <jmar@pacbell.net>
Laguna Hills, CA USA
Thursday, July 29, 1999 at 19:30:05 (EDT)
When I am in a cluster phase, what should I do about the mild pain that persists between flare-ups? It feels like my temple has been badly internally bruised, but nothing as mild as aspirin or as extreme as oxygen seems to "break" me out of this bruised feeling. It's like I'm my own loaded gun, waiting for there to be enough collected ammo to merit an Imitrex injection or a retreat to bed. Any advice? Thank you. Katie
Katie <friedchicken@earthlink.com>
Los Angeles, CA USA
Thursday, July 29, 1999 at 19:20:25 (EDT)
Hi, My name is Jim, and I have been suffering from cluster headaches for about 11 years now.
Jim Quigley <QUIGJIM@aol.com>
Fountain Valley, CA USA
Thursday, July 29, 1999 at 17:38:12 (EDT)
please send me information on clustter headaches. I am in a cycle right now, after not having them for over three years, and I'm interested in new information. thank you
ed bodensiek <edbo618@cs.com>
canton, ma USA
Thursday, July 29, 1999 at 10:24:56 (EDT)
I have had clusters for 33 years now, starting at age 15. I hadn't had a bad bout for 10 years, but am in the midst of one now. It's nice to have this site as a reference point.
Andrew Yale <andyyale@baka.com>
Ithaca, NY USA
Thursday, July 29, 1999 at 10:14:02 (EDT)
I've suffered for 16 years but as I get older, the headaches space themselves out ( now they're every three years) and don't last as long as say 6 years ago.Am I paying for something I did in a prior life?
Clark B. (Bart) Rollins III <a1969er@aol.com>
Brentwood,, Tn. USA
Wednesday, July 28, 1999 at 19:11:50 (EDT)
Curious to learn more about clusters and how they affect others. Very few people understand when I talk to them or try and explain to them the pain that these headaches cause. Hopefully there will be some information that I might be able to gather to help me deal with this...
Ron Reedy <Ronree24@aol.com>
Houston, Tx USA
Wednesday, July 28, 1999 at 15:59:18 (EDT)
Thanks for this wonderful website. It too have felt alone for many years with this demon called cluster headaches. It appears that I am shifting from episodic (30 years with onset at age 10) to chronic. I never even knew that was a possibility until I read the medical information. I now feel equipped to speak about this problem with my physician. I have been wonderfully successfully with sumatriptin (Imitrex, self-injection), but I fear that as this "episode" goes into its fifth month, they will have to take my miracle drug away. I need to stop this episode now! Thanks again for being there.
Margie Correll <AcMcKc@aol.com>
Colorado Springs, USA
Wednesday, July 28, 1999 at 15:32:33 (EDT)
I've been suffering since I was 13-14 in the mid 60's. Migrane, sinus, food allergy etc. First saw the term in a book on headaches in early 70's. Used dilantin, inderal, caffergot inhaler, finally tried elivil in late 70's with good results. Fine tuned to imiparimine and tofrinal PM
Glenn Schweikart <goslinggroup@gosling.com>
Reading, PA USA
Wednesday, July 28, 1999 at 13:07:38 (EDT)
Thanks for putting up this site. I'd been CH-free for four years and wasn't paying much attention, but all of a sudden it's baaaaackkkk! My neurologist mentioned the oxygen treatment and I went to the Web to check it out, and you popped up right near the top. For what it's worth, my clusters started in 1981 (age 41) when I was living in Beijing on a one-year assignment, and I thought it might be the massive amounts of MSG I was ingesting daily. But no such luck. Substrance avoidance -- caffeine, nicotine, alcohol, chocolate, you name it -- proved useless, as did acupuncture and pain meds, whuich just didn't work fast enough to deal with a 30-45 minute attack. Maybe the oxygen will work better, but I gather from the site that it's not a done deal. My sympathies to you all. And DJ, thanks again.
Ron Dorfman <dorfman@fmnh.org>
Chicago, IL USA
Wednesday, July 28, 1999 at 12:16:55 (EDT)
Fortunately, I am not a cluster headache sufferer, but my beloved only brother is. He has just begun a new series after 7 years! I am so worried about him. I wish he had a computer so that he could get some support from all of you. I will keep all of you in my prayers. Hopefully, some day soon, there will be a cure for this dreadful affliction.
Sherrie Adis <sadis@provide.net>
Novi, MI USA
Wednesday, July 28, 1999 at 12:14:39 (EDT)
Thanks for the outlet. Can't talk now but it is great to know you are out there for me when I can! Good Luck to everyone!
Brad Roeglin <broeglin@mailcity.com>
Milwaukee, WI USA
Wednesday, July 28, 1999 at 10:24:21 (EDT)
I just want to say how glad I am to have found this sight, to be able to chat with others who understand this terrible and frightening experience that we as cluster headache sufferers have been plagued to experience.
Harry Khachadourian <HaKhach@cs.com>
Lilburn, GA USA
Wednesday, July 28, 1999 at 07:24:33 (EDT)
What a great site. I haven't had an episode for over a year and am dreading it's return. I personally do not know any others that suffer from this nasty condition, but, now I know that I am not alone.
Greg <gbren@chorus.net>
Dodgeville, WI USA
Wednesday, July 28, 1999 at 05:43:02 (EDT)
Hi, 1:47 am just getting over another one.. I have been suffering from clusters since 1980. Thought I had beaten them this time. Was in remission for about 6 years. No such luck. :( Thought the cycle was broken. 1st one in 3 days Think I'll be spending some nights here.. thanks.. Steve
Steve <msvarnes@pacbell.net>
Orangevale, CA USA
Wednesday, July 28, 1999 at 04:49:05 (EDT)
Great site! I was browsing the web at the request of my spouse for cluster help. He's in an episode now, but will be joing you all, hopefully tomorrow. I found the Kip scale most helpful. It does hurt, when he says he wishes he were dead. I will keep all of you in my prayers. Joanne
Joanne <arubacdm@aol.com>
old bridge, nj USA
Tuesday, July 27, 1999 at 22:23:11 (EDT)
for the last year plus i have suffered from excrutiating headaches. at the time it was first diagnosed, the doctors at UofM medical hospital, said it was from severe sinusitis. Im only 18 years old and the specialists said i didnt fit the the norm 'cause im so young. but everything else fit to the T. no medications i have taken help. from ergomar to normal over the counter prescriptions like excedrin migraine. nothing is working, thankfully though there are a few web sites like yours out to give me a little more insight. and with some of the printed pages off your site hopefully my doc will give me the good stuff
shane d. loose <s_loose@yahoo.com>
flint, mi USA
Tuesday, July 27, 1999 at 21:27:04 (EDT)
Just wanted to say HELLO to everyone. I just found this site yesterday. I hate to know there are other people out there that has this kind of pain, but I'm glad to know I'm not alone with it. When the doctor first diagnosed this I had never heard of it and thought he was putting me on. Since I've read some about it but never had talked to anyone who suffer the pain or understood the pain. I actually though I was dying and sometimes wished I could to stop the pain. Anyway, again HELLO to everyone.
Gary Richey <gary.richey@retsco.com>
Houston, TX USA
Tuesday, July 27, 1999 at 13:26:55 (EDT)
Adress : Lubbeeksestraat 143 3370 Boutersem Cluster headache diagnosed in 1997 (Chronical)
Hugo Geuvens <Hugo.Geuvens@advalvas.be>
Boutersem, BELGIUM
Tuesday, July 27, 1999 at 12:52:59 (EDT)
thank you for this web site. I have had clusters for ten years now.it started when i hit my hesd on a pipe,any one else out there that had head injury then clusters. if been through all the meds,verapamil,lithium,sancert,depakot,prednisone,ect.ect.ect.had all the cat scans and nothing. imetrix works great,the injectable, but my doc is srarting to get worried about the possiblity of stroke,so now its pain killers hah codiene, it dont help. i remember reading about the use of high dose of magnisium 2000mg,vitamin b2 400mg,and calcium 500mg aday go to aol health and look up headaches. go to clusters and there might be some new stuff you havnt read yet. well good luck to you all and i hope the next CH wont be has bad as your last. GOD BLESS AND TAKE CARE....
DAVID SEISER <MAPWON@aol.com>
chicago, il USA
Tuesday, July 27, 1999 at 11:31:32 (EDT)
I am just coming back to life from a 12 day(night) episode. I have suffered with Cluster HA for 30 years. I am a 47 y/o wife and mother. I was finally diagnosed about 5 years ago by a saint in my HMO. My latest ordeal required Kenalog injection and Prednesone, as the Stadol was not numbing the pain this time. Oxegyn, Imitrex, DHE, do abosolutely nothing for me. I wonder why some treatments work differently for some people. Do you think it has something to do with the individual's triggers???? I am consulting my physician today to inquire about the use of anti-depressent to use as a preventive measure. I had some luck with that in the past using Elavil. Good luck to all in your treatment plans!
Sherry <Minipaws96@AOL.com>
Cumming, GA USA
Tuesday, July 27, 1999 at 11:02:07 (EDT)
I am just now returning from another "tour of duty" (6 weeks to hell and back) after a reprieve of 3 years...I honestly thought (and secretly prayed) that it had gone for good. I am 41 years old and have suffered CH since I was 20 - every 18 months, almost like clockwork, except for the last episode. Like before, I completed this "tour" in a hospital, with a morphein drip in my arm for a week, keeping me in another world - far away from hell. This site is a Godsend... thank you Daren J. My wife discovered the site and wrote in (Paula Martin 7/13) simply to vent while I was in hospital. Since then we have had many, many letters of support from sufferers and supporters. I cannot say how many times I have cried in the past couple of weeks when my wife has read me some of the stories and letters from this site, and the emails of support that we have received. Up until this point, I had not heard of another real CH sufferer and I often wondered if there really were any other true CH sufferers out there. Not that I would wish this beast on anyone, but I cannot describe the relief (and sadness) I felt when I heard some of the stories...it was like someone had dug-up my life and described it in chunks in each CH sufferers words. Like other episodic sufferers, my "tour" starts with a single "wake up call" one night, gradually escalating to around 8 attachs a day after a couple of weeks, peaking for between 2 to 4 weeks, and then gradually diminishing. Like everyone else I have tried just about every medication (including visiting a psychiatrist)listed in this site. Oxygen doesn't work on me, yet ironically in Australia (I live in Sydney), I can get as much of it as I want..home delivered right to my front door!! All I need is a letter from my GP. My CH attacks are slightly different to those of the many others that I have read in that I have NEVER seen an attack to its completion!!! I have either been anesthetised, drugged or simply passed out in pain. Up until this last episode, the longest that I had "screamed through" an attack was 6 hours before I was "injected out". This time I saw an attack through more than 10 hours...right THROUGH the 4 Imigran (I believe this is the same as Imitrex) injections that I administered myself and 2 morphein injections administered in the hospital, until some saint in the hospital decided to anesthetise me. The 2 neurologists that I regularly consult with both believe that my CH attacks trigger some other condition...but no-one knows what and no-one's really trying to find out. They also believe that the 8 or so attacks that I get each day are possibly all part of a single attack, with the Imigran (Imitrex) providing a temporary reprieve. Also, for the duration of the 6 weeks, I partly lose vision in my right eye which waters almost constantly and I become extremely sensitive to light and noise..living in a quiet,darkened room for the duration. During the episode I cannot go near a TV or PC screen or even read a line of writing. I am actually quite surprised at the number of sufferers who can use a PC during their episodes, in between attacks; I thought my vision problem was the norm with CH sufferers. Ironically again, I am a consultant in the IT industry and my work requires that I use a PC!!! Over the years my wife and I have learned to "live" with this beast, going through the many motions that will eventually get us through the six or so weeks, and then not so much as talking about it (almost in fear that if we discussed it, it might return) until the next episode. While I'm sure that there is much in life to complain about, I'm thankful to and for my wife, without whose love and support I simply wouldn't cope as I have. I'm thankful that, in the last 5 or 6 years, most of the medical profession has, at least, heard of CH, even though they don't really know how to deal with it. Likewise, I'm thankful that I have found, in this site, others who simply understand my pain. This is my first look at a screen since this episode began, and this is the first place I came to when I logged on. Thanks again DJ, and many, many thanks to Margi S and the many kind folk who took the time to offer support and understanding to us - total strangers on the other side of the world - may life be kind to you all. And to those sufferers currently doing their "tour" - my heart and thoughts are with you, hang in there - you've done it before, you can do it again. I hope that soon you will feel like I do now - IT'S GOOD TO BE BACK.
John Martin <johnmartin@pobox.com>
Sydney, Australia
Tuesday, July 27, 1999 at 10:44:59 (EDT)
I am a VERY infrequent sufferer of these things. My heart goes out to those that get these headaches with any frequency at all. I recently have had three attacks in 15 days. Prior to that it was over 6 years since I dealt with these things.
Pete Allington <pallingt@ibm.net>
Saginaw, MI USA
Tuesday, July 27, 1999 at 10:07:15 (EDT)
I have suffered from cluster headaches for almost 20 years (I am 39 years old) now and have only found out about 7 years ago that these are cluster headaches. The only medicine that seems to help is Immigran (injections & tablets) and it only reliefs the horrible pain (right eye, temple, neck, back of the head), but doesn't stop the cluster. I get the clusters once in every 1-2 years and for about 3-5 weeks with up to two headaches a day. I haven't tried oxygen yet, but will, since I heard it helps as well. I am very frustrated about the helplessness of this desease and about the lack of knowledge and possibility to cure it. When my clusters start I turn into a vegetable and am very depressed..... Well thats my story and it's already good to talk about it to some others, as noone really understands this desease.
Boris Kaz <boriskaz@yahoo.com>
London, UK
Tuesday, July 27, 1999 at 08:27:56 (EDT)
Yesterday I finally after six years of damned - but until now - periodic pain in left side of my head doctor told me: You got the cluster. Never heard of it - only got the feeling, and it surely is the devil banging my head. One-two times a year in periods of three-four weeks. Glad that I now know, whats wrong. But sad about the perspectives for the rest of my life. I´m 38 - and not looking forward to the pain, that surely will come again and again. Luck to all of you from Brian, Copenhagen, Denmark.
Brian Pabst <pabst@sid.dk>
Copenhagen, Denmark
Tuesday, July 27, 1999 at 07:54:32 (EDT)
hI !!,i'VE BEEN HERE BEFORE.Well, I guess every has been cured of this precious gift that we share. MMMMMmmmmmit feels so good !!!!
lENNY mCcULLERS <LJMCCUL@AOL,COM>
sCOTTSDALE, az USA
Tuesday, July 27, 1999 at 06:56:01 (EDT)
I am 32/F. I have had cluster headaches off and on for 5 yrs The only thing that I have found to work is imitrex injections and stadol nasal spray also cold compresses help. I have never experienced any pain like this. Child birth is easier. When the headache comes on, my right eye droops and waters, nose stops up then here it comes ! I find that cheese, ham, beer, wine, amoung other things trigger it. They last for about 6-8 weeks then gone until the next time. I feel for any cluster suffers !! Cissy
Cissy West <ipldthth@aol.com>
La USA
Tuesday, July 27, 1999 at 00:08:09 (EDT)
Hello Group, I am 36 male, married, 2 kids, engineer. I have been having clusters since high school. My last episode in Dec 97, was the worst and when I first learned about clusters. I am in the midst of them again now. I am taking Predisone 40mg for 8 days then 35mg, 30mg etc tommorrow I will be at 30mg. The predisone ended the CH's in Dec 97, but this time has only reduced their frequency. Which I guess is still a good thing. Since starting the predisone I have had only one CH (a full 10 - please shoot me now). When it hit I took 100mg Imitrex in the the pill form and Tylonel 3, still it lasted over 2 hours. It is great to find your cite. What a relief to know there are others who understand the pain. Keep up the good work. Troy
Troy Richards <trich@accesswave.ca>
Dartmouth, NS Canada
Monday, July 26, 1999 at 23:13:56 (EDT)
To all who find themselves here in pain and alone, look no further. You have found your home. Episodic since 1984 No longer alone Thank you to DJ and my new family from the message board.
Amanda Best <amandabest@rcn.com>
NY, NY USA
Monday, July 26, 1999 at 21:41:15 (EDT)

found you last week,also new to the computer. time to up date in life.female 57. been over 5 yrs with CH! when we had insur did the neurologist bit. all the differnt drugs. Verapamil worked for a time but nobody told me to go off it. use it for high blood pressure on 80mg 3 times a day.nothing is working now,going though a bad time up to 2 to 3 hrs on some 7 to 8 a day!!! something that worked for me in the past was really hot FRESH peppers (thai,tepin,pepin,machos)when you first start a CH eat on a pepper its stopped them and the peppers not hot and dont burn at all. its the capsicin in them sents a message to the brain a short circuit. doest work on the ones that wake you up! our plants froze this last winter the tepins and macho lasted 5 yrs trying to get new plants growing but no peppers yet!hope hope the CH's stop before we count on them hope the peppers help someone CJ cjsemail@yahoo.com _____
C J <cjsemail>
Cclimesa, Ca USA
Monday, July 26, 1999 at 12:53:42 (EDT)

I am very happy i found this site, having CH for twenty years now. I only get it after a period of to much tension and stress. If I get sleep enough and don't work to hard or create to much stress I don't have any trubble. So once in two years I have my one or two week period of CH and life is not life anymore, but going from atack to atack. My remedies: Stand upside down to create higer pressure in my head for 5 minutes or so; take a hot shower with al the water on the right side of my head; and finally if nothing works I use to different medicines. One is homeopathic: Nux vomicum C200, which should take the CH away within 24-48 hours, the second one is depronal which has the effect that you can sleep although the pain is in your body. From this place I wish everybody in the world having CH al the power to live life as good as possible. Try to find solutions for your own body. Do whatever you can think of to reduce pain.
Karel Maliepaard <k.maliepaard@wxs.nl>
Nagele, The Netherlands
Monday, July 26, 1999 at 03:41:09 (EDT)

I'm so glad this site exists! My clusters lasted for a dozen years, disappeared for about 5 years and sadly, are back again. THANKS for the support! Michelle
Michelle Crisman <mcrisman@aol.com>
USA
Monday, July 26, 1999 at 02:24:14 (EDT)

This is a super, super site. Thanks for all of the helpful insight and info. I have been battling these episodic cluster headaches for over 15 years. I have found that Caffergot suppositories were excellent if they were administered within the first 5 minutes of the the pain starting. Migarnal nasal spray with DHE has also been great if administered at the beginning of attack. I have not found anything yet to stop the pain after it was too late. I get 1 or 2 attacks a day lasting up to 4 hours; have had this episode since April. I will try to persuade my physicin to try me on prednisone. Again, thanks to all.
Darcy <d.oviatt@home.com>
Calgary, Ab Canada
Sunday, July 25, 1999 at 21:19:05 (EDT)

I have suffered for (20years) with ch's, they started when I was 20 without any warning, as many as 14 aday I spent every penny that I had seeing every doctor out there and all I got was med's that never worked and sometimes very dangerous doses. Everybody said that I was perfectly healthy and always wanted my money and swore that they could fix the problem, well now i know that they don't know the cause and that pretty much made treatments a guessing game. Ice packs are the only way I've found to ease the pain not stop it. When I try to sleep I wake every 45 mins., it goes to say my battery is pretty run down because I can work 10 hrs. a day but as soon as I stop the headaches start. It got so bad at one point that I turned to illegal drugs for relief (cocain) although it did keep the ch's from coming that also tried to add to the ruin. So here we are to the point that I look forward to the day that they might change from chronic to just happening a couple of months out out the year, Because If I didn't have Jesus in my life I would have stopped this pain dead in it's tracks. God bless all of you out there who suffer endlessly because I understand, better than any doctor will ever comprehend. Ric
Ric <hess2000@hotmail.com>
vilonia, ar USA
Sunday, July 25, 1999 at 17:00:19 (EDT)

I've tried all the medicines that all of you are trying now and have had no sucess for 6 years. I get 6 CH'S per day and have had NO REMISSION. My doctor is sugesting neuro- surgery. Has anyone had surgery pleasse write, I have not set-up E-mail yet. Brian Mack 34 Jackson St. Farmingdale,N.Y. 11735
brian a mack
farmingdale, ny USA
Sunday, July 25, 1999 at 13:57:58 (EDT)

I had my first cluster headache 3 years ago and never imagined their could be such a pain. After going a month with having these almost everyday, I finally chose to see a doctor. He ran some tests and told me I was getting cluster headaches. They were rare he said, snf not many people got them. He gave me medication and finally about 2-3 weeks later they subsided. I lived the next 3 years pain free. now This torment has started again. Everyday at least once, and sometimes more. It's very difficult for people to understand how this pain can change the way you react and feel. Finding this site has helped me to realize I am not alone with this anguish and pain. That there are others out there feeling as I do. Thanks, Carlene
Carlene A Josephson <Mystic32@aol.com>
Johnston, RI USA
Saturday, July 24, 1999 at 23:54:02 (EDT)

I have had cluster headaches for 12 years. They used to only last 3-4 months at a time and get 1-10 bouts a day, but 3 years ago i started taking verapamil which worked quite well (better than most anyway), but the cluster lasted about 9 months, then the verapamil didn't work at all. my neuroligist then told me to try epilim which was the best preventative drug i have ever tried (nearly got rid of them) but my cluster lasted for another 12 months and then the epilim stoped working. My neuroligist then told me because (the epilim was good while it lasted) i should try alternating with different epileptic drugs such as gabapentin, which i did with sucess until a couple of months ago. I am now currently back to the old ways of doing my weights banging and rolling about on my head and more importantly not being able to see any light at the end of the tunnel. My cluster has know lasted for nearly 3 years. My Neuroligist belives i still have cluster headache (Not cronic CH) and that it has draged out for so long because of the type of medicines I have taken. Has anyone else been through this ?. Also any comments on NEW Drugs ?. Please advise as my head and body can't take much more. kind regards Miles PS. I am new to computers, Where have i been ?, i can't belive there are so many other ch sufferers about, i have never had so much material at my fingertips. My heart goes out to everyone of you and hope your all nearing the end of your clusters. (Wishful thinking is still just about possible).
Miles <miles.buchanan@talk21.com>
Oxford, UK
Saturday, July 24, 1999 at 22:49:51 (EDT)

What a Godsend this site is! Wonderful, thanks DJ. I have had CH for 15 years, took 4 to diagnose. Nothing worked until 4 yrs ago, when a Dr prescribed Imitrex injections. They work great, but this week, my insurance company (BCBS-TX) says that 6 injections in 30 days is all I need. Clearly they don't have a clue. I've spent $300 of my own money in the last 4 days now. Thanks for this site to help spread the word that I'm not a drug seeking lunatic. I've never met anyone else with this condition, but I hope to someday. Take care, all.
Mike Horne <Myksbrain@aol.com>
Texarkana, TX USA
Saturday, July 24, 1999 at 17:03:49 (EDT)

I have been dealing with chronic cluster headaches (1-2/week) for the past 3 years. Thanks for the Web page. I visit once per month and find useful information during each visit.
Brian Boyer <pecina1@linknet.net>
Lafayette, LA USA
Saturday, July 24, 1999 at 13:28:13 (EDT)

this is fascinating to me that someone is trying to get all of us on the sme wave length. it sure does help knowing that there are others suffering just as i am. thanks.
dan <djleej@aol,com>
morganville, nj USA
Saturday, July 24, 1999 at 10:56:19 (EDT)

After reading the comments contained herein I am brought to tears also. It can feel very lonely sometimes. I have beee CH sufferer since age of 12, currently 44. Gone throught rountine fo Doctors and medications with the hit and miss results. I would like any information on those of you who have successful results with exercise. I would perferr that over the medications. Thanks for advive and support.
Greg <Clauson713@aol.com>
Destin, Fl USA
Saturday, July 24, 1999 at 10:12:10 (EDT)

Hi to all; I am a LONG TIME cluster headache sufferer...almost 19 yrs to be exact. They started when I was 35 and have continued unabated ever since. For the past 11 yrs, I can use oxygen to abort one; HOWEVER, it only works if I get it when it first starts. I also use lithium carbonate and ergotomine. Although they no longer come with the severity and frequency they once did (thank the gods), I still suffer as the condition is chronic and there's been no lengthy period of remission. Feel free to contact me at WRSINV 1@cs.com. Have a good one!
William Selonek
USA
Friday, July 23, 1999 at 21:03:16 (EDT)

Pack your mouth with ice cubes.
emil iannaccone <emili@wimc.com>
LA, CA USA
Friday, July 23, 1999 at 19:53:22 (EDT)

After suffering for over 20 years, at a few times a year I cannot believe the numbers out there who also suffer. The wonderful woman I share my life with, and worry sick when I have my bouts found this page while researching CH's, as I got over my latest session. I am now taking Caffergot, but you are really cow-tied as to when and how often you can take them.By the time they are ingested, the session is easing off. I suffered with these til last week when I decided to seek help. I am seeing a Dr. about these next week, for prevention and relief, but I am very worried about the cost of these new drugs. Having no insurance, can anyone give me a general idea of what the major prescriptive drugs cost? But as all my other friends in pain will attest, I will pay anything for relief! It is nice to know there are others out there, but I wish there weren't. This is no way to have to live life. Good luck to all of you, and try to hang in there!
Ted <rhondad3@ix.netcom.com>
Houston, Tx USA
Friday, July 23, 1999 at 19:38:31 (EDT)

I have suffered clusters that don't "cluster" for 6+ years now. I am 6ft. 4in. and weigh 235lbs. I went to college on a football scholor. I thought I was tough, now I am a shadow of my former self. I never even really knew what a headache was till this happened to me. Now I have no relief! I taken everything possible to keep the pain from occuring O2 helps a little but all the lithum and other junk doesn't seem to help. Sometimes I feel like a drug addict but I can't stand the pain anymore! I live for my wife and two children, If not for them I would have ended this pain a long time ago! I am not a coward I am just so tired of being sick that it's hard to go on. Sometimes I run around outside the house and scream at 2:00am because the pain is so bad. I would just like to get some quality of life back. I am not hooked on drugs the doctors seem to be afraid to prescribe them. I wonder what they would do if they were living in my shoes? No-one seems to be able to help me , Ihave had surgery 5 times and that hasn't even helped. Surely quality of life must mean something.
LEN <BULLDOGS1@HOTMAIL>
WILLIAMSON, WV USA
Friday, July 23, 1999 at 18:29:46 (EDT)

MY CLUSTERS DON'T "CLUSTER" THEY HAVE ATTACKED ME NOW FOR 6+
LEN <BULLDOGS1@HOTMAIL>
WILLIAMSON, WV USA
Friday, July 23, 1999 at 18:05:38 (EDT)

Aged 52, suffered since early 20's from groups of short (from 45 to 60 minute) attacks with acute pain behind right eye. Current treatment (Prednisolone) is the most effective yet undertaken. Bouts knocked down within 3 or 4 days.
Bill Harriott <bill.harriott@dse.vic.gov.com.au>
Melbourne, Vic Australia
Thursday, July 22, 1999 at 22:56:02 (EDT)

I am 35 years old and have been suffering from these cluster headaches since I was 19. I felt that it was time to stop chasing remedies for pain and start looking for causes. All doctors (including the specialists) were only too happy to prescribe drugs and play the hit and miss game. The Internet including this site became my only refuge, and despite the eye strain from the computer, I actually believe I found my cure. (I emphasize "my cure"). While surfing through many sites I came upon a site describing a study of Migrain patients that included 5 or 6 Cluster headache patients. I regret I don't have the site address but the gist of it was that the cluster headache patients responded 100 percent to the treatment and no indications of recurring headaches (at time of my reading) for any of the cluster headache patients. The migrain headache patients had a 70% reduction in intensity of headaches 70% of the time. I took this study to my neurologist who said that he could not support nor discredit the procedure (sitting on the fence). He did, however recommend I go see the ENT specialist and see if I may be a candidate for the procedure. As I am stuck for the medical terminology, I will explain in laymen terms. I had surgery done on my nose for what I believe the specialist called a deviated septum and irregular structure of the nose. I have been headache free for 30 months and counting. It is worthy to note that since the age of 19, I never made it beyond 18 months without recurrance of the clusters. Recommend you visit an ENT specialist, hope this helps. Take Care.
Craig Pike <pike.craig@ic.gc.ca>
Ottawa, ON Canada
Thursday, July 22, 1999 at 13:08:59 (EDT)

Great site. I have been diagnosed with CH recently. I have been having headaches for almost a month. 2 yrs ago I had another bout, which doctors told me were due to allergies. I have had cat scans, MRIs, and have prescribed many drugs. I have just started on predasone. I have gone 2 full days without a headache (yes!). I am wondering if this has been a good "first line" defense in preventing these awful headaches? I am so sick of people telling me these are due to stress. Thanks a lot
Scott Segal <srs94003@uconnvm.uconn.edu>
storrs, ct USA
Thursday, July 22, 1999 at 11:52:09 (EDT)

For cluster patients or physicians who treating such patients, I offer two potentially related resources: http://www.tna-support.org is the Trigeminal Neuralgia Association Homepage http://www.facepain.com is Face Pain Resources. Both address facial neuralgias whose symptoms sometimes overlap those of cluster. TN sufferers understand how you feel. All are welcome to visit and use the resources. Regards,
R.A. "Red" Lawhern, Ph.D. <lawhern@erols.com>
Sterling, VA USA
Wednesday, July 21, 1999 at 19:51:22 (EDT)

I am a female suffering from cluster headaches & would welcome any feedback & information. Especially people using oxygen in their home, Immitrex Injections or Sprays & Maxalt. I understand that 90% of those suffering from these types of headaches are male. I am one of the exception.
Susan A. Dame <ADameInGA@aol.com>
Rossville, GA USA
Wednesday, July 21, 1999 at 18:41:07 (EDT)

Hi all. Well.....had an appointment with the pain doc yesterday. Since the q-tip procedure didn't work he wouldn't do it again--WHEW!!! Instead he took time AGAIN to ask me to describe my pain etc., etc. I asked him again if these could be clusters. He does not lump symptoms into catagories. He decides where your pain is coming from, what your activities might be, what you eat etc., AND since the blocks into the nerve bases of the 2 nerves just above my left eyebrow did not bring any relief he wouldn't do those again either!!! However, I did get a greater occipital nerve block. I had two last August and experienced relief but not over the left eye. He said that that meant the doc who gave me those shots didn't hit the right spot in giving the block. And I could tell, within 15 mins I didn't have the awful pain over my left eye. It did produce more "cramping" above my eye and from the nerve base up my head and into my eye. They said that that was normal. Today???? well I have no pain whatsoever!!!! He said that the greater occipital nerve when it gets irritated can produce all sorts of pain. SO............maybe for some of you you might want to talk with your doc about that. My doc said that problems with this nerve can mimic the extreme pain of clusters! I have another appointment on the 3rd of August for another nerve block in the greater occipital nerve. What has been so frustrating for me is that the other doc who gave me the shots last year said that that nerve only goes to the top of the head, so the pain above my eye was not linked to it. But this new doc says that is not so--it runs from the base of the neck up the head, over the forhead, just around the eye, then runs under the eye and to the ear. At least I think that's correct. So if this nerve is aggatated then it affects everything else. Sorry this is so long. If any of you talk with your doc about GREATER OCCIPITAL NEURALGIA let me know if this info has helped you. Geneva
Geneva Slagg <daslagg@dakotacom.net>
Rio Rico, AZ USA
Wednesday, July 21, 1999 at 14:32:43 (EDT)

Have had Cluster headaches for 15 years, oxgen helps 100% in the duration of the actual pain, thanks for the help
jon Gumina <cusmiln@aol.com>
Orlando, Fl. USA
Wednesday, July 21, 1999 at 13:14:15 (EDT)

As Doctor Smith always said, (OH THE Pain) Going throught a cycle as we speak, I believe that it has to do with the alingment of the vertabra in the neck, how many of you suffers sleep on your belly. Please let me know?, I have the ice pack ready!!
John Maddux <piccard@mcn.net>
Lewistown, MT USA
Wednesday, July 21, 1999 at 12:58:55 (EDT)

I'm sure many people agree with me that when they first find this site, and start reading the guest book, tears begin to flow ... and not just from one eye ... it can be a very emotional experience to realize that you are not alone, that their are others like you, who know what you are going through. Without this site, that may not have been possible ... Thank you! It first happened when I was 17 years old, just starting college, away from home, alone, in the emergency room, thinking I was dying, and told to wait ... Episodic since then (average 3 bouts per year), it took almost 7 years (most of them thinking I had sinus problems) to finally figure out what the torture was all about (self diagnosed - of course). Having doctors look at me with that "he wants drugs" look in their eyes ... "You mean that ER doctor gave you NARCOTICS?, we cant have that, here is a prescription for some Tylenol"... They had became shadows for the past few years until May of this year, then the worst ever! Now having Internet access, I got on my surf (key) board, and waded out, that’s when I found this site. Many people may not notice at first, but a statement is made on the CH home page that is very true: "Welcome to your new home on the Internet". If you are a CH'er, or supporter, this is your home. The place to come for news, information, support, venting, and at times - laughs. Also, Mr. D.J., If I could be so bold ... stop being so damned humble! You have done so much to help so many people ... and I know you will continue to do great things. I foresee you being involved in bringing all of us together, and finding out that we are not as small of numbers as “they” think. There are too many people who visit here that are just finding out what they have. With numbers comes power, with power comes cures... You are the "king" of CH's! (that’s a good thing) - so please remember me when you're rich, famous, and pain free!
Pete Martinez <ptm@cda-net.com>
Norwalk, Ca. USA
Tuesday, July 20, 1999 at 19:26:44 (EDT)

I'm a 45 year old man. I have been struggling with chronic cluster headaches for 5-6 years. Usually they are controlled via lithium and indocin, but from time to time they rear their ugly head, and I take imitrex and oxygen. These usually do the trick, but not always.
Tim Martin <Timy4oic@aol>
Lincoln, NE USA
Tuesday, July 20, 1999 at 12:30:37 (EDT)

wow ! it's great to know that i'm not alone, thanks for being there tomp38@earthlink.net
THOMAS BRANCYK <tomp38@earthlink.net>
SAN JOSE, CA USA
Monday, July 19, 1999 at 23:50:17 (EDT)

Think you for this site. It helps just to now that I'm ot alone. "This should not happen to no one"
B Searcy <bsearcy@webtv.net>
houston, tx USA
Monday, July 19, 1999 at 21:06:47 (EDT)

Greetings all. Its been a while since I have posted. I just replied to a fello H/A suffere who was asking me what a CH felt like...I thought I might post my responce here since it was the best description I had written to this date. Hi there. Im not a doctor, so of course what I say here is only my opinion, you should get several doctor's opinions. It took 25 years of Neurologists and General Practitioners before one practitioner 2 years ago (whom I will always be greatful to) realized that what I had was CH. From what you have described, it does not sound like a CH. CH's do not last past about three hours (this is worst case, my understanding is that usually they are less than that) ....Mine last between 0.5 and 1.5 hours, ALWAYS on might right side, accelerate QUICKLY from a slight dull sensation behind and above my right ear...then 5 to 20 minutes later to the most excruciating pain I have ever felt. I cannot function and my WHOLE existence is that of unbearable pain. Then, it drains from me the same way it started...when it is all over (about 45 to 60 minutes usually) my right back side of my head is sore for an hour or so. I do feel a stabbing pain behind my right eye during the first part of my CH, but compared to the HELL behind my head, the eye stab is not a big deal. These things are also DEFINITELY CYCLIC....During my CH cycle, I get the CH about the same time of day. This last cycle was for about 6 weeks late February and early May. I would get one CH between 7:45 and 8:15 am.......then another one at about 1:30 pm.....everyday....for 6 weeks. Alcohol DEFINITELY triggered a CH at other times. About 2 years ago, a practitioner said I had CH, prescribed Amitrytiline (25mg) once a day at bed time....after about a week for it to kick in (Doc said it would)....IT WORKED!!!! In fact, I missed 2 days dosses and the CH came back, so I resumed the treatment and did not have a CH again......OR SO I THOUGHT!. 1.5 years later (this past February) They came back realy bad....The doctor said mabey I need a higher dose, she uped the dose to 50mg every night....2 weeks later the headaches left again. Of course I dont know if it was the dose increase that kicked in, or if I was simply ending my cycle after 6 weeks. Thats the weird thing about CH, I have heard of others who have 1.5 to 2 years between cycles....only time will tell....Personally I think I will probably have these damn things for the rest of my life. So, if the description I mentioned sounds like yours, mabey you do have CH. You might have both migraines and CH. The speech problem worries me, get it checked out again just in case. My guess is that headaches that last for more than 2 or 3 hours are NOT CH. Remember that I went about 25 years of different doctors before I found one who was smart enough to know what I had..... GET SEVERAL OPINIONS!!!!! -JOE p.s. Heres a simple test....When you have a headache, can you lay down to make it feel a little better? Can you try to sleep through it? I can't...the pain is so excruciating that I cannot just sit or lay there....that only makes me feel the pain....I have to apply STRONG pressure on my head..(I have a permanent indention in the back of my skull from years of pressing on the same spot) ....sometimes hitting my head behind my ear is neccessary ....ALL I KNOW IS PAIN. NOTHING ELSE.
Joe Cavazos <jose.cavazos@jsc.nasa.gov>
Houston, TX USA
Monday, July 19, 1999 at 12:36:28 (EDT)

thank you,just found your site . female age 57 having a badbout glad someone understands wish we didnt have to so many things I want to do and to drained to do any thing cjsemail@yahoo.com
C J <cjsemail@yahoo.com>
Calimesa, CA USA
Monday, July 19, 1999 at 12:35:53 (EDT)

After an 8 year respite from clusters, mine came back this spring-with a vengeance. The meds I took before seemed to have little effect. After 3 months of agony and sleeplessness, they have let up.
Bud <Green16746@aol.com>
Macedon, NY USA
Monday, July 19, 1999 at 12:31:43 (EDT)

Hi,I have been suffering from CH for 32 years> I am now 51 and in a cluster at present. So far nothing has ever worked for me, I am now using morphine to ease the pain. I was in the VA hospital last week for 3 days and they haven't been able to help (except for the morphine). I hope something works someday. I'm glad this site is available, at least I know there are others that will believe me. Paul Crane enarc@vtc.net
Paul Crane <enarc@vtc.net>
Cochise, AZ USA
Sunday, July 18, 1999 at 21:45:00 (EDT)

I am so happy to find your site.I am not the one who suffers from these,but the man i share my life with is has been newly diagnosed.He has been plagued for the last month,with what we were convinced to have been an eye problem.Luckily,after a visit to the emergency room last night,the doctor shed some light on us.We went to fill his prescription this a.m. and found the medication to be way out of site.He works for himself,and is is uninsured.They wanted 110.00 dollars for 5 pills!!I am looking for any suggestions for relief as I am reading all this testimony and realizing nothing really helps.Apparently he suffered with this for years but never knew why.this site is very informative and I sure I will be back here.The episodes associated with an attack is bone chilling.My deepest sympathy to all you victims.
BRENDA CADIEUX <BRENDA-JEFF@WORLDNET.ATT.NET>
MERRIMACK, NH USA
Sunday, July 18, 1999 at 20:58:32 (EDT)

i have suffered from cluster headaches all my life. i get them at a frequency of 18 months and they last from 6 to 8 weeks. i currently use verapamil to combat the headaches which i have found to be of some success but not completely.
A.R. Hadadi <A-rahim@hadadi.freeserve.co.uk>
High Wycombe, UK
Sunday, July 18, 1999 at 17:03:22 (EDT)

It's nice to know I'm not alone, not that I would ever wish this on anyone.
jayne salters <jayne_salters@hotmail.com>
Nashville, Tn USA
Sunday, July 18, 1999 at 13:54:26 (EDT)

Have been all over the country, Mayo, UW Madison, Diamond Clinic, Houston Clinic. No help anywhere. I think my headaches are triggered by leaf mold (doctors don't agree), but if I am outside in damp weather, playing golf, or by the lake, I can count on triggering a cluster. Anyone else experience similar situations?
Sandra Fleming <Ccsmommy@aol.com>
Springfield, MO USA
Sunday, July 18, 1999 at 10:26:15 (EDT)

Found a place where I can cry for the first time in thirty years. Thanks...
David McDonald <david@samizdat.freeserve.co.uk>
Barrow-in-Furness, United Kingdom
Sunday, July 18, 1999 at 10:20:38 (EDT)

25 year sufferer and seen it all. Thanks for this sight!
Jeff Bennett <bennett410@msn.com>
New Castle, IN USA
Sunday, July 18, 1999 at 00:53:08 (EDT)

I have had CH's since '74, episodic, thank goodness, I usually have up to 14 months remission.I use injectable Imitrex,one half dose. I haved tried most everything with some success,but prefer imitrex, my med plan covers the cost.
Frank De Wit <f_dewit@hotmail. com>
London, On Canada
Saturday, July 17, 1999 at 17:34:52 (EDT)

I have had CH's since '74, episodic, thank goodness, I usually have up to 14 months remission.
Frank De Wit <f_dewit@hotmail. com>
London, On Canada
Saturday, July 17, 1999 at 17:26:03 (EDT)

Hey LADIES--those of you who HAVE been diagnosed by your doc as having CH's, how did you get him to listen to you or even accept what you were saying about the clusters? I see a pain doc again on the 20th. Last Tues he did a procedure through the nose with q-tips and pain med. It didn't help at all and I need to know how to talk with him!! Any input would be greatly appreciated!!! THANKS
Geneva <daslagg@dakotacom.net>
Rio Rico, AZ USA
Saturday, July 17, 1999 at 15:08:54 (EDT)

Lots of hard praying to St.Jude has worked wonders for me If interested contact me .....
Bill <mod.1k@juno.com>
Superior, wi USA
Friday, July 16, 1999 at 21:21:32 (EDT)

my last note should have red MELATONEX
Bill <mod.1@juno.com>
superior, wi USA
Friday, July 16, 1999 at 21:11:44 (EDT)

67 years old 22 years with CH Over the counter melatones (sustained release) is working for me this time
Bill <mod.1k@juno.com>
superior, wi USA
Friday, July 16, 1999 at 21:09:17 (EDT)

I too am a suffer of cluster headaches. But now when I get these I am also now getting sick to my stomach and have the dry heaves. Maybe it's just that I am so tense and nervous about getting these that I cause this myself. This is so frustrating and it's hard to explain the situation the my employer. They just say its a headache and to stick it out. They just don't understand the pain that comes with these and how you just want to lie down and not be disturbed.
Lisa Hopper <lisahopper@yahoo.com>
Port Angeles, WA USA
Friday, July 16, 1999 at 11:57:36 (EDT)

An added note. I have been prescribed a plethora of drugs over the years. The best solution to date is Cafergot (sp?). In tablets or suppositories. The later works quickest (10-15 minutes.) The downside is that you can only use them five out of every seven days (Side effect: Gangrene.) But the sudden relief is heavenly.
Wynn <donwinfred@aol.com>
Tucson, AZ USA
Friday, July 16, 1999 at 11:38:58 (EDT)

It will be 25 years this fall that I began to experience the demon that comes. I sit here now and cry to have found someone, somewhere who knows what happens. How it feels. How lonely it gets. To know that I am not crazy. That these are not "just in my head." That they are real. Thank you.
Wynn <donwinfred@aol.com>
Tucson, AZ USA
Friday, July 16, 1999 at 11:29:46 (EDT)

I've suffered cluster headaches for 13 years, but only got them diagnosed correctly four years ago. I thought I was the only one in my family who got them, but my cousin just got his diagnosed (correctly) last year. He pointed me towards this site; it sounds like a wonderful resource for us who suffer the "suicide headache."
Kathryn Brenny <kbrenny@ryanminn.com>
Minneapolis, MN USA
Friday, July 16, 1999 at 10:21:43 (EDT)

I,ve been a CH patient for more then 15 years now and I,ve finally found a way to control the demon. 'Verapamil' just works fine for me. My doctor, Dr. Ferrari from the Academic Hospital in Leiden, Holland, is considered an expert in the field. I live a normal life, (the pain is like a regular headache and won't last)thanks to his research. He told me years ago that he suspected a different behavior of the Hypothalamus, and as it seems, he is on the right track. I hope that one day, the doctors will find a final treatment for all of you. Godwin Deyl, Zoetermeer, Holland. godwindeyl@netscape.net
Godwin Deyl <godwindeyl@netscape.net>
Zoetermeer, ZH The Netherlands
Friday, July 16, 1999 at 10:11:09 (EDT)

I have suffered from cluster headaches for 25 yrs. Not 1 Dr. could diagnose these headaches until last year. Thank God that I found a Dr. that did not think I was after some narcotics. Sorry for the vindictiveness of my statement, but after thousands of $$'s it is fantastic to finally get relief. After submitting my response to your survey I found quite interesting that I fit all highest percentage groups but 1 category! I am interested in alt. methods of fighting clusters without the high cost of injections of Imetrex. Thanx for the awesome web-site! :)
Melvin Shields <shieldsmel@aol.com>
Decatur, Il USA
Thursday, July 15, 1999 at 23:40:06 (EDT)

A stabbing paine every five minutes... It all started June 1st. I had an ear infection and called my doctor and made an appointment for noon. That morning while at work I started to get these short bursts of stabbing pain from inside my head, on my forhead, above my right eye. By the time I went to the doctor they were hitting me every 3 to 5 minutes... Needless to say, my doctor (and myself) was more worried about the headaches than the ear infection. He sent me to a hospital for a CT scan. It came back normal. He then perscribed some of the pain medication used for migrains, sent me home, and told me to come back the next day. The most powerfull of the medications only worked for an hour. All day. All night. A dull pain would start and then ... WAM! right above my eye. A ice pick stabbing me from inside my head. An excruciating pain for a few seconds and then it would be gone. Three to five minutes later ... it would start all over. This went on all night. My wife and family was so worried. By morning I was wiped out. I went to the doctor again and he sent me to a neurologist. He put me on Prednisone. What a life saver. With in a few hours the attacks had dropped off. With in a couple of days the attacks were all gone. He told me they were cluster headaches. I term I wish I had never heard before. I have been reading as much as I can and it seems most people do not get the non-stop attacks like I had. I guess I will have another attack someday. The attack is one of the most debilitating events of my life. I did not realize how much it affected me untell weeks later. Greg (Age 43, non-smoker)
Greg Boxold <boxold@gte.net>
Honolulu, HI USA
Thursday, July 15, 1999 at 22:41:34 (EDT)

Wow, I've read a good number of these testimonies and I am shocked by the fact that so many people experience the same pain as I do. The left side, behind the eye, crippling, piercing pain that seems to be sinus related. I'm 35 and have had them for 15 years. I've had many tests which have been inconclusive and I've taken just about every drug that is listed on these pages and nothing works for more than a couple of weeks. Rainy seasons seem to bring them out more frequently and more severe. I have one extra side effect to add to the list. When I'm into the worst pain of my CH's, I break out in a full body sweat. I have to mop the floor when I'm done. My clothes will get soaked and as you can imagine, it's pretty embarrassing when I get an attack in public. I would really appreciate if anyone else has this happen to drop me a short e:mail. Wigraine, (a prescription tablet consisting of mostly ergotamine) has helped somewhat in the past. I also take over the counter Actifed and Sudafed which helps but isnt the end-all. Anyways, thank you for making this site! I'm not a super religious person, but I'll say a prayer for a cure soon for all of us.
Al Kumick <arkumick@aol.com>
Treasure Island, FL USA
Thursday, July 15, 1999 at 17:11:15 (EDT)

25 yrs. of these demons,going from 1 a week to 4 a night.Houston diagnostic center was my relief.
Ted R.Sanders
Beaumont, Tx USA
Thursday, July 15, 1999 at 14:48:26 (EDT)

I enjoyed reading about the medicines available in USA IF ONLY we had forward thinking Dr,s in the UK.
Rob Philips <philips@omn.net>
Inverness, Scotland
Thursday, July 15, 1999 at 14:01:40 (EDT)

I am just starting a bout with cluster headaches. First time I've had a computer while suffering, so decided to do a web search and found your site. Lots of great info here. Am going to try some of the home remedies (ginger ale, spearmint tea, etc.) to see if I can abort them. Fortunately, mine don't seem to last for more than about 10 minutes, but I really feel for those of you who have to endure longer episodes.
Pat Burke <roradora@ewol.com>
Englewood, FL USA
Thursday, July 15, 1999 at 11:34:28 (EDT)

I'm a ten year sufferer of CH but but just found out this week (July/99) what the name of this crazy thing is. I have found tremendous comfort in knowing I'm not the only one but it sadens me to think that there are so many of us. I urge anyone who stumbled on to this site to read through the archives and message boards to find out all you can. I want to thank all that have been here before for your comments and comentary. They have helped.
Trent Hatfield <thglass@aol.com>
Fort Wayne, In USA
Wednesday, July 14, 1999 at 22:54:05 (EDT)

This is for D.A. Baldwin---yes I have that same problem with the pain just sitting there. I can take 2 (or more!!) extra strengh excedrin and it takes the edge off. However most of the time it doesn't help and I just sit and suffer till it lessons. I get the "BIG" pain mostly in the middle of the night and upon awakening in the a.m. Many times IT wakes me! I did have a procedure done yesterday by a pain doc. They went up my nose with a LONG q-tip with pain med on it finally reached the back of the nasal cavity. There is a gangleon way back there that sometimes hits the nerve and cause the type of pain I am having. The doc said that if this was the problem the pain would be gone with this procedure. ALAS as the pain med wore off I still had the same pain in the same places. See him again on the 20th to determine what next?!!! Anybody out there have this done to them? Someone wrote me about it but I've lost his name etc. He told me to check with a "ENT" doc. Everybody, hang in there---you are not alone!!!
Geneva Slagg <daslagg@dakotacom.net>
Rio Rico, AZ USA
Wednesday, July 14, 1999 at 16:06:24 (EDT)

I am not a cluster headache sufferer myself, but my boyfriend is and has been for the last ten years. I found this web site and told him about it but he's hesitant about coming here himself; he's been through so much and is on the verge of believing that no one can help him or even tell him anything about clusters he hasn't heard before.
Jennifer Yeazel <jenyeazel@netscape.net>
Chicago, IL USA
Wednesday, July 14, 1999 at 13:20:34 (EDT)

Just came to this sight to find out about cluster headaches. I'm still trying to decide if I have them. Thanks for the info.
Amy Presley <jpresley@ipa.net>
El Dorado, AR USA
Wednesday, July 14, 1999 at 13:10:59 (EDT)

12 Year Sufferer
Michael Rhodes <mdrhodes@sprintmail.com>
Farmington Hills, MI USA
Wednesday, July 14, 1999 at 12:58:07 (EDT)

I am 44 and have suffered from these headaches for 19 years. I spent one wasted season with an allergist, getting shots twice a week. Then I was told that a chiropractor was the answer to cluster headaches. Wrong. They first came in 1-month series every year, then I went two years at a time with no episodes. The last headache-free period lasted two and a half years, and I thought I had 'outgrown' them. Silly me. The current series started six weeks ago. Verapamil has been fairly successful for me, seeming to reduce the severity and number of headaches (sometimes 2-3 nights with no episodes). However, if I'm not mindful of triggers (chocolate for me), I can get 3 a night, with pain reminiscent of the old, non-diagnosed, non-treated days. This is a great site. I especially appreciate (and sympathize with) all who share their experiences. I feel that I have a mild case compared to some in the archive... but don't ask me that when I'm in the middle of a night like I had last night.
C. Twisselman <twiss@salinas.net>
Salinas, CA USA
Wednesday, July 14, 1999 at 08:54:12 (EDT)

My wife found this great site. CH sufferer since 1987. Try Prednisone 80mg for prev. and Stadol fpr pain. Worked for me since 1995. Also, I eat a tabasco sauce sandwich on one piece of bread appr. 4 hours before I'm due for a CH. We are all pull8ing at straws so give it a try if you want. Good luck and keep your head together........The pain will go away even if for a hour or two.
Ron Ritter <Ronjeans@aol.com>
Warminster, PA USA
Tuesday, July 13, 1999 at 21:43:26 (EDT)

Hi everyone, I have challenges with migraines, not cluster headaches, but my husband has what I believe to be CH quite often. Has anyone ever tried therapeutic magnets?? They have given us both relief within minutes for the headaches we have as well as other muscle pain. Don't want to make this post too long, so email me and I'll be glad to pass along the details. Take Care, Rose at visionq@msn.com
Rose Taylor <visionq@msn.com>
Columbia, SC USA
Tuesday, July 13, 1999 at 15:02:05 (EDT)

It helps knowing that someone else understands. Thanks
Stan Nichols <dumdum@penn.com>
Brookville, PA USA
Tuesday, July 13, 1999 at 12:44:53 (EDT)

I've added a name of a friend of mine who was recenty diagnosed with cluster headaches. He does not have an e-mail address but he wants some info or feed back. He was glad to find out that there are other people who suffer just as he does.
Clement Herron <davisc@gwmail.dtcc.cc.nc.us>
Durham, NC USA
Tuesday, July 13, 1999 at 11:47:01 (EDT)

Hi everybody, I'm 57 years old. My first cluster was about 20 years ago although it was another 10 years before I was positively diagnosed. I've been on Verapamil for some 7 years and and headache free for more than 6 years -- UNTIL late June. Since June 27th, I've had 17 of them. I really thought I was an ex-cluster headache sufferer, but am now resigned to dealing with them for life. The most reliable method for dealing with the clusters in my experience, is to exercise vigorously. When I feel one coming on at home, I get on an exercycle and get the heart rate up to about 120 or 130; it takes 6 or 8 minutes for the headache to disappear. This scheme works even when one wakes me at night. Climbing stairs and running in place can also be effective for me. The only other relief I've discovered is bitterly cold air, which seems to relieve my clusters, but cold air is hard to find in July, even in the Colorado Rockies. Of course, there are those that don't respond to anything. Had one like that last Saturday. Lasted for about 8 hours. I'm very pleased to find a web page devoted to cluster sufferers. I don't personally know anybody else who is a sufferer, and non-sufferers look at me strangely when I explain what clusters are and how they operate. Except for my family. They all know I'm not pretending! Ironically, there was an ad in The Denver Post last week for a clinical trial of a drug for clusters. I called and will be screened for the test next week. I'll keep you posted. I'm looking forward to hearing how everybody else deals with this affliction. John
John D Baker <jbakerusa@yahoo.com>
Denver, CO USA
Tuesday, July 13, 1999 at 10:17:15 (EDT)

I am 46 years old. I have been having clusters for over 20 years. Started with 2 bunches a year. Around Jan and then around July. Over the last 10 years I have only been getting them Around July. I am now in a cluster. The last bout I had was over 3 years ago.I start with a cluster every other night then 1 a night then 2 , 3 , 4.... I have now started getting them in the evening beforegoing to bed. This is something that has not happen in over 15 years.I only had been getting cluster when sleeping. Thepain seems to be a new high this time... Every time I think that I have reach a 10 the next one is worst. This cluster has been going on a little over a month. O2 is not working this time and have not found any thing to stop the cycle yet...
Tony Barnes <jbarnes@socket.net>
Jefferson City, Mo. USA
Tuesday, July 13, 1999 at 08:44:58 (EDT)

Australian cluster headache sufferer. Only tears can express how I feel finding this site. Husband is in his 4th week of cluster headaches, with last Thursday's 12th attack for the day finding him in an ambulance at 2;30am after 5 hours of unbelievable and indescribable pain. His treatment of Sumatriptan (Immigran subcutaneous injection) failed to work and after using 4 needles in a row out of desperation and trying to see the cluster through, unsuccessfully, we were forced to call an ambulance. Once in hospital and after 6 hours and countless mg of morpheine, he never saw this headache through, simply passing out after a local anaesthetic injection was used. My heart broke and I wept openly in the emergency room. When will it stop?? He has suffered since he was 20, now he is 41. They come every 2 years or so and last 6 weeks. Mostly he has 6-8 attacks per day with the classic stapping behind the eye, watering eye and nose, pain running down the neck and no Isoptin, Deseril, DHE's, Steroids, profylactics, blah blah blah will work. Immigran takes the stabbing away but still leaves a heavy head. To our dismay we are now discovering that Immigran when used with such regularity stops working as the body rejects the drug outright. We have found a leading professor in headache research (who actually invented Immigran) Prof James Lance, but even he failed to prescribe my husband with treatment that makes them go away. He is recovering in hopital now, has been 4 days and the cycle seems to have been broken with morpheine. I hope to see him come home to me and his beatiful baby girl soon. I am so grateful to have found this sight. For decades we have felt soooo alone. I look forward to visiting your site often and hopefully posting new information, as we discover it, which may help everyone out there. As soon as hubbie is out of hospital I will make sure he also registers. My thoughts are truly with you all -I know what you go through. Kind regards, Aussie wife of CH sufferer.
Paula Martin <paulamartin@pobox.com>
Sydney, Australia
Tuesday, July 13, 1999 at 07:25:34 (EDT)

Excellent information. It is an incredible help to know I'm not the only one. Sometimes I feel like I'm going crazy and nobody understands. Thanks, Thanks, Thanks
Dave Lindsay <yasdinal@hotmail.com>
New Port Richey, FL USA
Tuesday, July 13, 1999 at 01:39:24 (EDT)

Wow! I've finally found a place that can help me. Your information is mind-boggling. Thank you
Barry Sachs <bsachs@abs.net>
Westminster, Md USA
Monday, July 12, 1999 at 21:38:33 (EDT)

thank you
LP <perltarry@aol.com>
tarrytown, ny USA
Monday, July 12, 1999 at 21:30:05 (EDT)

Just stumbled across this--excellant idea--I have been in a headache free period for several months now, though I am waiting for the other shoe to drop. I take these h/s -free times for granted; when they return it reminds me of the little girl in Poltergeist 2 who says, "they're back"! Has anyone out there noticed that a new medication works for a while, and then these "very intelligent" monsters figure out a new way to break through? I truly feel for those who are not in the free zone now, who are suffering from the pain that only others can wonder about. I must really be fortunate for what I have read I get the impression that mine are mellow compared to others', though it surely doesn't feel that way when i have a screaming skull. My thought and prayers to you who are on "active duty" now. Sincerely, Dave johnson
Dave Johnson <matohanska@msn.com>
TYRONE, PA USA
Monday, July 12, 1999 at 17:31:10 (EDT)

Diagnosed with clusters 24 years ago, after having many tests and wisdom teeth removed! Various experts have provided me with so many drugsover the years that I can no longer remember what I've had, and ALL the Doctor's that have seen me just do not have a clue about the severity of pain involved, or is that they don't believe me. The one and only piece of information that appears to be correct so far is that they should dissapear as I get older. Not sure yet but they have reduced steadily from 4 seasons per year to one now ( I hope). Thank you so much for providing the site. I am currently in the middle of my annual summer cluster and was feeling really low one night when i found you. it was a wonderful feeling after all these years to find that i'm not a freak and there are other people out there with exactly the same problem that do understand the pain & misery this disease brings to you and your family. Good luck to you all and to all fellow sufferers.
Paul Baker <Servicecall@fsbdial.co.uk>
Harrogate, U.K.
Monday, July 12, 1999 at 10:43:00 (EDT)

I last posted in August (i think) of last year. Am afraid I haven't revisited since my headache cycle ended but other life stressors took precedence. I do want to thank this site for existing and appreciate the periodic email that informs me of developments in the treatment etc. And I will try to respond to any queries that come my way. thanks to all. Sincerely, Dr. Richard Welser Clinical Neuropsychologist
Dr. Richard Welser <duffy@hci.net>
Morganton, NC USA
Monday, July 12, 1999 at 10:22:34 (EDT)

I've been plagued with these headaches for 25 years. Thankyou DJ. I'am really not alone.
Don McGee <donald@roadrunnersw.com>
Chesterland, OH USA
Sunday, July 11, 1999 at 21:19:55 (EDT)

18 year sufferer
Ken Swarts <kensw5@aol.com>
Ocala, Fl. USA
Sunday, July 11, 1999 at 20:30:55 (EDT)

I finished with the last cluster headaches about two weeks ago. However, I am now having small areas of pain around my left eye, not enough for me to bang my head or keep me from doing anything but they just seem to hang there. This is different than the last 4 bouts of episodic clusters. Is there anyone out there that can help me with this new form which does not seem to want to leave me?
D.A. Baldwin
USA
Sunday, July 11, 1999 at 17:50:00 (EDT)

I have suffered from CH for over 12 years. Last October I found something that helped. (I haven't had the spike in the eye since.) For me the answer so far has been in the metaphysical. If you are really open minded, and I don't mean just mouthing the words, this will work for others. If your interested send me an email. However, don't contact me unless you are really willing to re-evaluate your beliefs and spiritual path. The Adventure Continues Nevyn
Nevyn Campanella <nevyncampanella@gilanet.com>
Glenwood, NM USA
Sunday, July 11, 1999 at 17:40:05 (EDT)

Cool page...beats searching all over the net. Thanks!
LeeAnne Carrothers <lcarrothers@westernu.edu>
Huntington Beach, Ca USA
Sunday, July 11, 1999 at 14:14:49 (EDT)

Just got off the drkoop.net/healthnews site. In it was an article about clusters and research done in England. A new technique known as voxel-based morphometry is being used to examine the brain stucture. They are finding that in CH suffers there is more grey mattet in the region of the hypothalamus. I don't know if this technique is being used in the U.S.A. but maybe worth checking into to PROVE we are having clusters!
Geneva Slagg <daslagg@dakotacom.net>
Rio Rico, AZ USA
Sunday, July 11, 1999 at 13:43:48 (EDT)

I think I'm a new cluster sufferer, and found this site. Lot's of good info here, and I plan to visit a lot. Am in my first cycle ever, and don't know how to cope.
Sandy C <Tareyc@aol.com>
Jamestown, NC USA
Sunday, July 11, 1999 at 13:29:35 (EDT)

Great web site! I have been cronic for 12 years,and became episodic last year.Its nice to get somesupport and feedback.The survey was very interesting. Thanks.
John Mather <natmo@stc.net>
Clarkesville, GaGrea USA
Sunday, July 11, 1999 at 10:07:11 (EDT)

I am 48 years old and began to experience CH when I was a 20 year old soldier in Vietnam. My episodes generally last about a month, with daily or multi-daily attacks. The CH may last from 2 to 4 hours and are debilitating to the max.
Don Ewing <dewing4251@cs.com>
Haleiwa, HI USA
Sunday, July 11, 1999 at 07:26:14 (EDT)

It is very comforting to know I'm not alone. I've been having 5-6 CHs a day for the past six weeks. Imitex works, but I can only have two shots within a twenty-four hour period. The balance of the time I must endure the pain! I'm frustrated, and am feeling very hopeless. I know they will end soon and I'm hoping I will have strength to endure until they do.
Elizabeth Nathanson <enathan939@aol.com>
Ashburn, VA USA
Saturday, July 10, 1999 at 15:10:54 (EDT)

Hi all tis me again! Yesterday was a bummer. The CH just sat there above my eye, in my eye, etc., etc.! Thanks to allwho are e-mailing me. I am making copies to take to my next visit with my neuorolgist. I am scheduled for three more nerve blocks on Tues the 13th. I am only doing this to prove to my neuo that they are not working!!!! Have a great day all.
Geneva Slagg <daslagg@dakotacom.net>
Rio Rico, AZ USA
Friday, July 09, 1999 at 13:02:54 (EDT)

Hi! I'm a 42 yr old woman and have suffered from CH since I was 13, usually one episode a year. I'm in the 4th week of this attack, but recently started taking prednisone, which is helping. I'm concerned about the headaches coming back full force when I stop the medicine. I've been reading some of the postings, and really relate with you. I'm trying to just enjoy the good out of each day, and not worry too much!
shelley
USA
Friday, July 09, 1999 at 12:45:13 (EDT)

I'm a 44 yr old male suffering from episodic scluster for 20 years.
Gordon Eslava <feelgood@unidial.com>
bremerton, wa USA
Friday, July 09, 1999 at 06:32:43 (EDT)

I had never had a headache until 3 or so weeks after my 1st Brain operation for Trigeminal Neuralgia. After that operation, I started having severe post-op surgery headaches, high pressure headaches and after about 1 month, I got the BONUS plan and started having Cluster Headaches manufactured in Hell! I've now had a total of 5 Brain operations since 10/98, and now live with a shunt in my Brain and travel from state to state looking for a doctor who can figure out why the hell this is happening to a 27 year old male with no past history of Neurological based problems. After reading some of the persons Trial and Tribulations on this site who have dealt with these CH's for numerous years, I feel fortunate that I've only had them for 9 months. Bravo to you all. Great site, stay well. Airborne! Kevin Colford
Kevin Colford <kevincolford@hotmail.com>
Waterville, ME USA
Friday, July 09, 1999 at 00:03:55 (EDT)

I am a 28 year old female with a past history of migraines. I have have been migraine free for 6 years. two weeks ago, I was diagnosed with cluster headaches with horner's syndrome. I am on verapamil and indomethacin. on the onset of a headache i take imitrex and fioricet. i am doing well. thanks.
ELLEN JACOBSON <BEHLJACOBS@AOL.COM>
ISHPEMING, MI USA
Thursday, July 08, 1999 at 15:24:13 (EDT)

To all Migrane sufferers and also Cluster Headache sufferers my doctor has issued a prescription for "Imigran" it comes in a nasal spray, tablet or injection with a pen injector relatively painless to manufacturers claim it works on CH but as I am unsure of the symptoms of these I cant say. But as far as Migrane it is miraculous a stab in the leg clears up a massive attack inside an hour. The medical name for the medicine is "Sumatripan"give it a go. Alun
Alun Davies <alun.d@net.ntl.com>
Neath, UK
Thursday, July 08, 1999 at 15:00:41 (EDT)

hi...i've suffered from ch for about 20 years. i would be able to handle them as they were not in groups as frequent as i currently have. i have finally made an appointment with a doctor at my boyfriends urging. i will bring along the information i printed from this site. hopefully he can prescribe something as i am living in fear of my next attack.
julie <greyx3@yahoo.com>
MA USA
Thursday, July 08, 1999 at 10:13:43 (EDT)

I have had CH for 14 years, but a new twist is that I have become episodic on the left and chronic on thr right. Verapamil and prednisone work for the episodic but only imitrex works for the chronic on the right. I am really delighted to find this site. I thought I was pretty much alone.
Charley Moffat <moffat@cncacc.cn.edu>
jefferson city, tn USA
Thursday, July 08, 1999 at 09:22:37 (EDT)

Wow. I'n a "new" sufferer - 1st CH October 1997 after ruling out all of the other obvious (wisdome teeth, mass lesion, aneurysm--seeing as I do not conform to the usual for CH sufferers being a female and 35 at the time) was officially diagnosed as CH sufferer. Second series began about 6 weeks ago and I've been through Tylenol 3, Cafergot, Imitrex pills, 800mg Ibuprofen and Demerol. Even tried Percocet left over from C-Section (painless procedure/recovery compared to CH.) Still no real relief. Going to try to see doc again today. Just need it to stop. Have retired husband, 1 child and a high-pressure job that supports family--and requires significant travel overseas. You ain't had a CH till you've had one at 32,000 feet!!! ; > Great site. More information than I could absorb at once--a rare treat for anyone trying to figure out what exactly the demon is that we're battling. Regards.
Elizabeth Molinaro <ehmolinaro@aol.com>
Dearborn, MI USA
Thursday, July 08, 1999 at 09:02:50 (EDT)

One of those knights! I finally decided to sign the guestbook. FWIW I use a couple Midchlor at onset. Works good ... if I get it in time. 4 Yr,vet of "the pain". Walk in the sunshine.
Dennis O'Connor <bjdoc@lcc.net>
Conroe, Tx USA
Thursday, July 08, 1999 at 04:31:02 (EDT)

well are a surprise. they're back. Thought i had my time at the beginning of the year. Oh well i will start verapimil and sansert right away instead of waiting ..like i've done in the past except for the last time when i started right away and they were controlled within 2 weeks. DJ thanks for the recent info on the grey matter...hopefully they will find out more of know why...so i will have a reason why i have headaches and so i don't have to hear all the other reasons that we were told until diagnosed with clusters...you know allergies,stress, high blood pressure etc etc...i hope to say one day that i get them because i have more grey matter around my brain...oh that would be so good to say instead of they don't know...
mike <mikezav1@AOL.Com>
new york, ny USA
Wednesday, July 07, 1999 at 20:58:51 (EDT)

i'm soooooo glad to have found this site!
suzanne baker <suzyq910>
tampa, fl USA
Wednesday, July 07, 1999 at 19:47:54 (EDT)

have had clusters since forever..presently 43 having bout now ..usually 6 wks long. i actually inhale steam from a kettle of boiling water to attempt to releive the pain ...usually works. it appeared that my cluster were diminishing to every 3 yrs but since 1996 have had them every year,,,very frustrating...
david viscarde <dviscarde@AOL.COM>
CALVERT, TX USA
Wednesday, July 07, 1999 at 12:02:59 (EDT)

I have been suffering with CH for about 20 years. Bouts last 4-8 weeks with 2-5 years in between. If anyone knows a doctor who is sympathetic in London, please e-mail me. I find that humidity is a trigger-has anyone else had this happen?
Clare Leavenworth Bakali <Csbakali@aol.com>
London, UK
Wednesday, July 07, 1999 at 09:02:58 (EDT)

feeling lost, going on my 4th week of clusters, missing work, enjoying life, at least i'm not alone.
paul kearns <paul777@earthlink.net>
burbank, ca USA
Wednesday, July 07, 1999 at 04:21:04 (EDT)

i need treatment info. the doc swicthed me from propanapol to indomethacin and it doesnt work either. dont get to see her for two months but am in headache free period any sugestions. im in vet adem treatment due to lack of funds,thank you for any help.
michael tomes <emty48@ yahoo.com>
houston, tx USA
Tuesday, July 06, 1999 at 23:13:34 (EDT)

Suffering 34 years and in a terriable cycle now
Susan Fischman <tatala@concentric.net>
West Hollywood, CA USA
Tuesday, July 06, 1999 at 22:23:56 (EDT)

My husband has suffered (and continues to suffer) from cluster headaches for the past 15 years. It has been the most challenging, humbling, frustrating experience--I can only observe the pain...and ring my hands and cry into the pillow. Thanks so much for having this site, I already wrote down some ideas I am not sure my husband is aware of. My big question is--'do they ever go away?' You hear about people getting relief for a period of time with this or that, but do they ever leave? We need some hope. Thanks again. It does feel good to know that we are not alone.
sjm <saraspath@aol.com>
savage, mn USA
Tuesday, July 06, 1999 at 21:54:00 (EDT)

I am suffering with Cluster Headaches which are occuring now 5 to 6 times a day. I am concerned that any doctor that I might visit will not take this illness serious, but diagnose my illness as something else.
Richard Olinger <rolinge2@tampabay.rr.com>
St Petersburg, Fl USA
Tuesday, July 06, 1999 at 16:40:51 (EDT)

I just found this site and am amazed in all the other peaple out there with the exatly the same as mine exept that mine swap sides some times. i get all the same symptoms and have done all the same things .Its some thing that I never new about. Im going to try oxegyn now I just have to convince my doctor now .I am overwelmed with the pain that comes threw on this page I have full knowledge of it and my heart goes out to any one else gets these horrible things. Has any one tried the psychology approach?Im sure some one has. Thanks for this sight
Paul <paulcamp63@hotmail.com>
London, U.K.
Tuesday, July 06, 1999 at 16:39:10 (EDT)

Have lived with clusters for 7 yrs. no end in sight. Most of the time they only visit in the fall, this year thier her to stay. Hell bent on destroying my new home. My wife has MS so it's hard for me to ask for help or even complain. The stress is very hard on her athough she dose understand. Happy to have found you.
Joseph Cuglietta <Josephc@wbhg.com>
Sandy, Ut USA
Tuesday, July 06, 1999 at 16:27:20 (EDT)

Thank God! I've felt so alone for so many long years.Just knowing that someone else out there can relate to this insane pain, makes me feel alot better.
Scott Burkhart <bfscmts3@hotmail.com>
Barnwell, sc USA
Tuesday, July 06, 1999 at 16:16:49 (EDT)

could;nt belive i found this site been sitting here crying for the last hour i thought i was the only person that did half the stuf i been reading {bangihg head on floor,wall cant walk get sick }been getting these damn things since 1971 back then thay thought i was on drugs the school and my folks started making me take drug tests when that proved usless thay sent me to head docs thinking it was in my head then thay started putting me on major drugs witch did'nt help[funny thought test me for drugs then put me on major drugs doctors know it all] well CH has come back i dont know what to do people around me just dont understand helpme please general docs dont know thanks for letting me winnnnnnnnnnnne
ken wixson <none>
westland, MI USA
Tuesday, July 06, 1999 at 14:28:16 (EDT)

This is my first bought with this kind of thing,and it has taken me by suprise.The headaches I get are all over my face now,after 3 months of fighting with it. The one thing I have discovered is the lack of help you get from the medical groups around,they act like you should just suck up the pain and deal with it. Mabye I am acting a little like a child,but when I have one of these headaches I feel as helpless as one.
erle zans <ezans@hntb.com>
independence, mo USA
Tuesday, July 06, 1999 at 13:47:01 (EDT)

How can I help?
Linda Larson <lindadiner@yahoo.com>
Annapolis, MD USA
Tuesday, July 06, 1999 at 11:37:31 (EDT)

I'm truly amazed at the number of sufferers on this site. I've never actually met anyone who has suffered from CH. Mine started in 1983 as severe sinus headaches when I joined the Navy and moved to Florida, then got progressively worse. At first, it was once every 2 years for about 6-8 weeks, once every 2-3 days, lasting from 15 minutes to 2 hours. I did the MRI Catscan thing and tried every pill in the book and as we all know, nothing worked (except pure oxygen). I now get them once a year for about 3-4 months, 2-4 times a week, mostly at night or early A.M., sometimes during the day usually lasting anywhere from 15 minutes to 4 hours, never more than once a day (I'm lucky in that respect). The only difference being that after the cluster is gone, I have a migraine for the entire day, sometimes 2 days, and feel as weak as a kitten. The pain is always excruciating, always behind the right eye all the way down my neck, including watering eye, stopped up nose, etc. The pain seems to be triggered by several different factors: Not enough sleep;too much sleep;hunger;heat exaustion;drinking alchohol;sinus congestion;tension or anything that would cause a normal headache for most people. It's like using a smaller bomb to trigger the A-Bomb. I've had my wife take me to the ER, which I've also done for her migrane attacks. It's been 13 years, and still no relief in sight. And when you're in the Navy,of course everyone thinks you're faking it to get out of duty or something. How can you prove a headache? Now that I'm out, it still affects my job, my hobbies, my home life, my sleep and every other part of my life, and no one understands the helplessness until they have to carry you from your car to your house like they did me when I stayed out in the sun a little too long! But I'm glad there's something like this for CH sufferers to help one another, though it is sad to see there are so many. Any comments, anecdotes or suggestions would be welcome. Thanks.
Clusterboy <tobynlaura@inteliport.com>
Elizabeth City, NC USA
Tuesday, July 06, 1999 at 00:34:23 (EDT)

Thank you for forming this website. My husband has been suffering with cluster/migraine headaches for 9 yearss, with a 2 1/1 year remisssion. He is not in remission now, but is sick daily. It will be nice to be able to speak to someone who understands.
JANICE F. <IVANSGAL@AOL.COM>
TUCSON, AZ USA
Monday, July 05, 1999 at 23:33:57 (EDT)

I have had a really intense headache today. I have tried asprin and florinal but neither have worked. I breast feed and I can only use certain things. If you know of anything please let me konw.
corrie fletcher <hannahbates@webtv.net>
kill devil hills, nc USA
Monday, July 05, 1999 at 18:40:29 (EDT)

It's my husband who suffers from cluster headaches, not me (praise the Lord!). To see him in such pain is really heartbreaking. He was hospitalized the first time, because they though he had ruptured an anurysm. They were unable to the controle the pain at the hospital, but sent him home anyway. Of course he had another one the nest day. As ususal, I had spent hours doing reasearch on the net and found a drug thay they hadn't tried and demanded that our family dr. give it to him. It worked. One thing that I want people to understand, is that the nurses ( I am one), often go off and cry when they have a patient in severe pain that they can do nothing about. Nurses are dependant on doctors and doctors are dependant on keeping up to date on new meds and treatments. Just know that it's really hard on your family and the nursing staff, too. Pat
Pat <linbap@faithware.com>
Walkerton, IN USA
Monday, July 05, 1999 at 12:02:23 (EDT)

I never really knew that there was a site that had other people who could possibly understand what this pain is like. I am hopeful that this will lead to a treatment for us all!
Doug Nohe <nohed@aol.com>
Jarrettsville, MD USA
Monday, July 05, 1999 at 10:34:15 (EDT)

My clusters were thought to anything from eye problems to sinus problems. Finally, out of sheer luck, i happened to have a cluster attack while at an appointment at the Diamond Headache Clinic in Chicago. Since then my cycles go about two years apart and last about 6 weeks with clusters every third day. I am currently in a cycle going on 8 weeks where i get them every day. I am currently on Lithium, Isoptin, and prednisone. I have a question about Immitrex. During my last cycle i used the shot. It seemed to get rid of the headache right away, but i seemed to get one 12 hours later. Now I am using the pill and it seems to not work at all. Has anyone had any experience with Immitrex? Would love to know... Thanks
K shinn <the.shinns@cwix.com>
Chaska, MN USA
Monday, July 05, 1999 at 08:19:01 (EDT)

To: Dave H (No Money for Oxygen) My insurance covers my oxygen. You will need a rebreathing mask and you will need to turn your tank to 7 liters. Sometimes I have to go higher, but 7 usually works. You may already know this, but just in case you don't, I want you to know as soon as you get your oxygen. Also, some companies will charge you a LOT each month. Be sure and let them know you will only need it occassionally for headaches. They will think you will be refilled about once a week. This happened to me when I fist got mine. Then I had to get the big tank. Now they make gauges for the little tanks that go to 7 liters. Good luck! Let me hear if it works.
Leelee Lewis <leelee10@pciconnect.com>
Ga USA
Monday, July 05, 1999 at 07:34:49 (EDT)

42 yr. old acute cronic sufferer for over 10 years (have been in a cycle for over 4 years) Have tried every med. known.... Able to control for the last 3 years with mixture of meds, but has been complicated due to haert attack last year.
Mark <BretsMar@aol.com>
Youngstown, OH USA
Sunday, July 04, 1999 at 23:47:20 (EDT)

HELP---my doc says that my pain is in the supraorbital nerve and the other nerve beside it and that I have "false" cluster headaches. I've had a 2 blocks in the greater occipital nerve base and 1 each in the nerves above the eye. How do I get my neuorogist to LISTEN?? The blocks above the eye have not helped. Also has anyone ever heard of Sluder's Syndrome???? I can't find that anyplace on the net. I wake up many times with the severe pain. Bless my hubby he tries to rub my neck, head etc just to see if he can help relieve some of the pain. I can take extra strength Excedrin and it takes the edge off the pain. But like right now I'm only doing this on the net as a distraction cuz my head hurts. I'd sure appreciate any info from anyone that can arm me to talk more with the doc. Thanks. Geneva Slagg daslagg@dakotacom.net
Geneva Slagg <daslagg@dakotacom.net>
Rio Rico, AZ USA
Sunday, July 04, 1999 at 13:51:54 (EDT)

I am a 62 year old male who suffered from unmanageable cluster headaches from 1970 - 1987 at which time I successfully underwent RFL surgery at Mass. General Hospital in Boston. Except for infrequent "clusters" caused by outside agents (paint thinner, fertilizers, etc) which have been contained by Imitrex nasal spray.
James E. Fenlason <FENLA1@aol.com>
Longmeadow, MA USA
Sunday, July 04, 1999 at 11:18:30 (EDT)

After a 3-4 year remission, they're baaaaaaaaaaaaack!
John Mark Gauthier <jmgoat@lni.net>
Tecumseh, MI USA
Sunday, July 04, 1999 at 04:58:51 (EDT)

New to your site, new to Cluster Headaches!! In the past couple of weeks I have visited your site a number of times for info, but didn't feel that I had suffered or had anything substantial to add, so resisted logging in with your guest book. Like maybe I didn't hurt enough to qualify. I am 55yrs old, yes 55!! And just now have suffered my first bout of CH. The weekend of May 14-16 will now be as memorable to me as my kids' birthdays. I was camping with my son's Boy Scout Troop. I had my own tent. It had been a cool and damp day and was a chilly night, but I was in a sleeping bag on an air mattress and the tent was buttoned up. At 2:00AM I awoke and shot up with the most unbearable pain I've ever had. It was on the left side of my face only. Starting from above my upper teeth, up through my left nostril, around the curve of my eyebrow, into my temple and ear. Though my eye hurt, it was my left nostril that felt like it was being burned, its entire length, like scalding. Yet, I found it totally blocked, could neither breathe out of it, nor blow anything out. My temple hurt like injured, but not throbbing, in fact nothing pulsed or throbbed, and my inner ear hurt so much that it began to ring ( and has ever since). I sat in a tent, in the woods, and rubbed and rubbed my head so fiercely that rolls of superficial skin flaked down on my sleeping bag like dandruff. And then it was gone!! I went to sleep, exhausted. And it started all over again at 4:30AM!! I just got up and fussed about the campsite, as it seemed less intense if I was vertical rather than laying down. Back home, I started the night bouts that you all talk about, but my wife and I had no idea what was going on. Usually two a nite, some very bad, ocassionally one during the day. My left ear had never stopped ringing since that first nite at Scout Camp, which actually turned out to be my deliverance. Went to our family GP. He treated me for sinus infection and suggested I see my Dentist. Dentist said all was well, must be sinus. One day it was so bad that the early morning attack (about 4:00am) didn't subside and I didn't go to work. My wife took me to the ER and there they handled me like a migrain. Put me in a dark room and did a CATSCAN. All proved negative and their drugs did nothing to stop the pain, which was always the same since the first night: on my left side from above my teeth, up through my nose, across my eye brow, into my temple and ear. My temple was actually tender after an attack, as though struck!! I went to a nuerologist who said, "A vascular headache due to a chemical imbalance." What chemical?? He would have to find out. He put me on anti-depressants and pain pills, one so strong (Max-Alt) that my Pharmacist was almost afraid for me. After another week of nitely attacks and missed work, the neurologist gave me blood pressure control pills and now the warning bells at the pharmacy computer went off, literally, it seems that it should not be taken with the pain killers. I never took it. But as my ears had never stopped ringing, I went to an "Ear,Nose,andThroat" MD that I trusted. He told me about Cluster Headaches!! He will treat me, and I shall not return to the Neurologist and his prescription pad. One bout and a diagnosis. This is why I had not felt that I should add to your site. But I do have questions: The ear ringing...does anyone else have it. Does it go away? Mine hasn't and my Dr. says, after testing by an audiologist, that I've lost some acuity in my left ear. The hot poker burning inside my nose. Is that odd? I couldn't find it on your site. My age, 55, does that mean I'll become chronic? This bout has lasted five weeks and am just pulling out of it now. Am I safe for a while? Body clocks what difference do they make? I have been late for everything...really. Started shaving in my twenties. Acne set in around 25. My wife thinks it is funny, but grew my first chest hair at 40. I usually win at carnival age guessing booths. Both my grandfathers lived into their 90's. In fact one grandfather died hunting deer in deep snow at 95!! And finally, what about euphoria after an attack?? My wife is worried first about the attacks then I get lovey afterwords. Am I nuts? And euphoria or re-adjustment after a cluster period. After five weeks of awakening with pain, I've had a week of sleeping through the night. So what do I do?! Stay up!! And fool around on the WEB, till all hours of the morning. Why? Because I can. I'm getting screwed up. I wish you all the best and thanks for the info, Jack Burke
John "Jack" Burke <zekeboots@aol.com>
DeKalb, IL USA
Saturday, July 03, 1999 at 15:54:21 (EDT)

Truly an excellent place! Good info, good discussion, good idea's, comraderie. Thx! BDL
Brian Lintner <blintner@telusplanet.net>
Medicine Hat, AB Canada
Saturday, July 03, 1999 at 10:00:38 (EDT)

Everything on this site is a God send. I never knew this place existed until I looked it up on my search engine. I've been suffering from "The Headache" since I was 13 years old. That's 20 years. Wow I never even thought of how long that is. I've tried medication once. It didn't help. I've been using "Rub A-5 35" and "Flex-All".It only helps a little bit. Now I know of some more diferent things to try. Thanks for everything, especially the webmaster
Wes Mussato <wmussato@towncore.com>
Delta, BC Canada
Saturday, July 03, 1999 at 07:25:25 (EDT)

Excellent web site! After being free from clusters for almost six years, I thought I was free, I was wrong. Three days ago they started again, and I'm glad to see information out there to conferm that I am not alone, I thought I was. Your infomation describes my attacks to the tee, just with there was a cure. People don't need this kind of pain, ever!!
Jeffrey <jheard@sktc.net>
Clearwater, KS USA
Friday, July 02, 1999 at 21:11:11 (EDT)

Hello, I hope all will have a safe and headache free July 4th. I am 44 years old and have had CH since I was 12 and I'm female, one of the minortiy. Good health to all of you!
Julie Denham-Boyd <jordan23y@yahoo.com>
Elizabethtown, Ky USA
Friday, July 02, 1999 at 16:28:14 (EDT)

Hey, all! I have suffered from CH since 1988. It started as I woke up after a surgery in my knee (after playing soccer). My guess is that something went wrong in the anesthesia...? Spite the fact that I've asked again and again for my journals and papers concerning that surgery, I've been denied it. (Aker Sykehus, Oslo - Norway - Dr Fasting) I was lucky enough to have a mother who never settled with no answers and lazy doctors, and a mother-in-law(!) who remembered that Imigran should be tested in Sweden. This was in -91, and I have found 100% relief in the "Imigran-shots"!! My clusters come twice a year and lasts for 1-2 months with attacks twice a day, always early morning (5 a.m.), and again around noon. Hope for more life & less pain!! Hilding Runar
Hilding Runar <hrunar@online.no>
Lillehammer, Norway
Friday, July 02, 1999 at 15:21:20 (EDT)

I have just found this Web site, I never knew it existed until now. I have been plagued for over 20 years, I was always told they were migraine attacks, but I found out a few years ago that they might be cluster headaches by reading an article in the Migraine News. I am looking forward to reading all the information here to find out for sure. I would like to here from anyone who wants to chat, especially if you live near me. It would be amazing to meet a fellow sufferer.
Geoff Helyar <ghelyar@hotmail.com>
Portsmouth, UK
Friday, July 02, 1999 at 10:57:53 (EDT)

no comment
Joe Di Noto <joedinoto@aol.com>
Alta Loma, CA USA
Thursday, July 01, 1999 at 23:31:22 (EDT)

I've been suffering from these headaches since the 7th grade. Everyone thinks I'm crazy! Even though there is a long history of migraines in my family, including myself, I am the only one to have clusters. It's making my life a living hell and has started to be debilitating concerning my work and home life. Currently I have had these 4-8 times a day for 10 weeks now and if it weren't for the fact that I'm 8 mo. pregnant, I would have slit my wrists by now! The worst part is I'm allergic to sumatriptan and cannot take most medications because of the pregnancy. I'm on Indirol but now that has lost it's effectiveness. It's very reassuring to read other people's stories about their headaches because they sound so familiar. It's nice to know that I'm not alone.
Kristine Spiller <KESpiller@aol.com>
Katy, TX USA
Thursday, July 01, 1999 at 17:35:56 (EDT)

I would like to say Thank You Thank You and Thank You all. My dad suffers from CH, has for 20 years or more.The doctors have never helped him. He asked me one day if I'd do some research on CH and I did and I found yah. Many of you made some suggestions for my dad. I've seen my dad in tears and crawling and banging his head on things so I understand some, but I was overwhelmed by you all, Dad thought he was all alone even though he doesn't wish this on anyone it made him feel better that he's not alone or crazy. So I done the research and I bet I printed out 50 pages of yah's suggestions and I loaded my dad up and took him to his doctor and gave him the papers. He is a negative Dr. But I insisted that he try my dad on some of the suggested med's and he did after the 3rd try we found one that works. So my dad thanks you and so do I. Some one was putting down the internet the other day in front of my dad and myself and my dad said " I don't know much about it but it helped me ". So rest assured friends your work on this site is not in vain. If there is anything I could do for yah I'd be happy to do it. Feel free to e-mail me PEG@IOCC.COM My name is Rena and we are from Prescott, Arkansas. I hope you all are CH FREE today and 4/ever. May god bless each of you. :-)
Rena Brown <PEG@IOCC.COM>
Prescott, AR USA
Thursday, July 01, 1999 at 15:57:28 (EDT)

Thanks for your site. I have had CH for 23 years with no relief with any of the medications. Prednisone worked once, but second time it didn't. Read your site 2 nights ago while gutting out one that woke me but wasn't real severe. Read about oxygen. Last night, woke with a big one, wife drove to emergemcy room where i asked for oxygen, what a relief. 10 minutes and it was leaving, 20 min completely gone. Had one starting tonight, took some oxygen and stopped it before it got bad. Hope it continues to work. But thanks again for turning me on to the treatment. I also learned a lot from your site that doctors never told me. Saw a great doctor today though, and as we discussed treatment, he was extremely well informed and agreed with everything I had read in your site. Thanks, Don
Donald Cook <donpc@aol.com>
San Diego, CA USA
Thursday, July 01, 1999 at 07:16:56 (EDT)

I would love to speak to anyone who suffers from cluster headaches. I have suffered now for nearly thirteen years and have never met or spoke to anyone who also suffers from them. Just to speak to someone with the same condition will help.
Mark Gummerson <mark@gummerson.freeserve.co.uk>
Hereford, England
Thursday, July 01, 1999 at 04:20:45 (EDT)

I'm looking for the report writen by the Dr. in England. I would like my wife to read it. Thanks
Frank DeMarzo <Terikid@aol.com>
costa mesa, CA USA
Thursday, July 01, 1999 at 01:13:04 (EDT)

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