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

Below are the guestbook entries from June, 1999. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

Search this site!

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

 

I suffered my first cluster headache on June 1, 1999. It started over the weekend as a series of dull, mild head aches. Tylenol or Asprin did not help. On Tuesday morning, June 1st, I had my first real attack. It was a sharp, stabbing pain above my right eye, on my forehead. An hour later it was back. Then 20 minutes. By lunch time I was in my doctors office. The stabbing attacks were now hitting me every 3-5 minutes. It felt like a knife was in my head and stabbing the inside of my skull. The pain was excruciating for 5 seconds, then subside for another 20 or 30 seconds, then nothing. Three to five minutes later...its back!!. This went on for a day and a half. Non stop. Nothing worked. I was finally referred to a Neurologist. He put my on Prednisone. What a life saver! My head hurt from all the trauma for another 4 days. I did not feel normal again for a week. I guess the odds are I will have another attack someday. I just hope it is not as intense.
Gregory Boxold <boxold@gte.net>
Honolulu, HI USA
Wednesday, June 30, 1999 at 19:35:14 (EDT)

I have suffered with migraines/cluster headaches for over 10 years. There is nothing I haven't tried. I find myself in the emergency room every few months because the pain is so unbearable. Every day is a struggle and is painful. I hold on to little hope that something will help.
Heather <rnicitaasst@caa.com>
LA, CA USA
Wednesday, June 30, 1999 at 19:01:28 (EDT)

I had Cluster Headaches for 15 years. They would start every May like clockwork, and continue for months. Day in and day out, all day long......... Night after night waking up shortly after going to sleep, with excruciating pain behind my left eye. It felt like a screwdriver was being jabbed, time after time into my eye. Never before or since, have I felt any pain that can compare. I came to the forum to tell other CH victims that there's hope. That there IS something that worked for me. I thought that maybe I could help someone else.... But, I found that most people in the forum just didn't want to hear it. I was attacked vehemently by many of the "compassionate" folks here. I've been CH free for 9 years now.....Thank God Life is good!!!!
Danny Hartnett <lizard55@hotmail.com>
Kilgore, TX USA
Wednesday, June 30, 1999 at 12:15:43 (EDT)

I have suffered from chronic cluster syndrome for over ten years and no remission yet. I am amazed at the resemblence between my hostory and that of others. I was fortunate to find a physician who recognized the condition after only a few years of headaches. It is reassuring to know that I'm not alone.
Jerin Russell <russeljj@utrc.utc.com>
Ellington , CT USA
Wednesday, June 30, 1999 at 12:02:07 (EDT)

I'm just signing in and haven't read much yet. Looks like there's a lot here to sift through. I'll say more after I've read some more.
Glenn Koenig
Arlington, MA USA
Tuesday, June 29, 1999 at 23:36:46 (EDT)

I've had clusters since I was in my teens (I'm 30 now) and didn't know what they were until I was finally diagnosed last year. I was so relieved to find out that I really did have an actual medical condition & that I wasn't crazy! It was very hard to explain to other people about what I was going through...especially at work. But I found a fabulous and very understanding neurologist who's taught me a lot about clusters & how to deal with them, so now when that God-awful pain hits, I can finally fight back.
Edra <GAPch0369@aol.com>
Atlanta, GA USA
Tuesday, June 29, 1999 at 20:30:27 (EDT)

I am doing some research to see if there is a better answer to her FM/CFS problem and cluster headaches. I believe there is a better answer than Lortab 7.5 and Lortab 7.5 and one Percocette to jump start her in the morning......
Andrew Uzzell <jauzzelljr@aol.com>
Simpsonville, sc USA
Tuesday, June 29, 1999 at 19:36:30 (EDT)

Cluster Headache Sufferer since 1987.
Dbisko <dbisko@csnet.net>
Parsippany, NJ USA
Tuesday, June 29, 1999 at 19:10:19 (EDT)

I would like to share some info that I found out today. Please see http://news.bbc.uk/hi/english/health/newsid I hope this may be a turning point for all us suffers!
Louise Hinkley <Paul Hinkley@x19uk.Freeserve.co.uk>
Birmingham, England
Tuesday, June 29, 1999 at 18:41:07 (EDT)

I have suffered for five years with cluster headaches. I take Calan sr for my headaches. I always have atleast two M-Tanks of oxygen in my bedroom. I also use Cafergot for emiteate relief. I am very glad to have found this site. Jim
James Gumm <amotif@bellsouth.net>
Harvey, LA USA
Tuesday, June 29, 1999 at 12:08:20 (EDT)

Does anybody have experience with hydrogen peroxide injections?
HENRY CHRIST <HANKCHRIST@AOL,COM>
DENTON, MD USA
Tuesday, June 29, 1999 at 11:30:29 (EDT)

my sympathies to all. after 3 yr remission the dreaded returned last wed.i was on my way to the gym when the vision blurred, nauseous feeling started & the phobia began felt as tho' the car roof was crushing in on me
Ken MacLeod <kmacleod@tellumat.com>
cape town, RSA
Tuesday, June 29, 1999 at 07:11:53 (EDT)

I am new. My CH's started about a month and a half ago. They have been so bad i have already seen my Dr. twice and a nurologist once. Today they put me on imitrex nasal and or imitrex needle. I am to decide which works best for myself and then get refills. My doctor says the injection meds will be very expensive, so he hopes the nasal works better. At the moment i just hope something works. Have broken many bones in my life and have never felt this much pain. (frankly would rather break a bone). Thanks for having this site.
Scott Jarvis <dallasbuddy@yahoo.com>
Rochester, NY USA
Monday, June 28, 1999 at 20:55:55 (EDT)

I have headaches at least 14 days out of every month. I'm so sick of taking medication. Please help if possible. Thx
LINDA TORIBIO <ROSALYNDA@AOL.COM>
OVIEDO, FL USA
Monday, June 28, 1999 at 17:22:22 (EDT)

My name is Judy Schneider. My husband Kenny has been suffering from Cluster Headaches for 6 yrs now. We have been to "specialists" who have not helped at all!! Thank you for you're webpages.
Kenny Schneider <jwschneider@hotmail.com>
Cape Coral, Fl USA
Monday, June 28, 1999 at 08:45:54 (EDT)

What an awesome resource. I have suffered from clusters for years and just started having them again last night after almost a year of remission. My family thought that I was crazy when I first started having them. I have had oxygen, imitrex injection, and a straight lidocaine injection in the nasal passages(In the emergency room after 3 hours - the longest cluster I have had to date). The lidocaine injection hurt like heck, but it stopped the cluster in less than 2 minutes. I will definately be back. I am also going to try and get my fiancee to check out your site so that she can understand a little better. Richard E. DeFord http://www.geocities.com/~deford
Richard E. DeFord <richard_deford@hotmail.com>
Sedalia, MO USA
Monday, June 28, 1999 at 07:44:01 (EDT)

Thanks for the site. It will help me through my current episode of headaches.
Greg Lee <greg@effect.net.au>
Canberra, ACT Australia
Monday, June 28, 1999 at 07:21:31 (EDT)

I've been suffering from ch since i was a sophmore in high school. finally when i was a senior i went out to the Dimondhead Headach Clinic in Chicago were i was able to get the help that i needed and complete high school. last year i had to go to chicago again before college started where i went almost one year headach free. now i just turned 21 and the headaches came back stronger than ever and i am unable to go to chicago. i've tried many, many different things for my headaches. oxygen seems to help if i catch it soon enough. but the last two headaches have been too strong even for the oxygen. just wondering if there is something else i can try. thanks for your help. this is a really nice web site and helpful. i guess, i just wanted someone to know that. may God bless you.
James Dean <jamesdean29@hotmail.com>
Bismarck, ND USA
Monday, June 28, 1999 at 06:30:28 (EDT)

I have just spent most of the night reading messages on your site, and I hav to admit - I cried several times. God, do I know what a lot of you are suffering! My first attack of CH came when I was 8, but the real hell started 7 years ago. 3 months going from one doctor to another, white pills, green pills, pink, blue, yellow - you name it. And of course - 'you are very depressed, go see a psychiatrist.' Luck saved me, and a woman who loved me who one early morning found me drinking coffee, chain-smoking and not looking at the pistol laying on the table ready to end the next, and last, attack. I know what many of you know - the way the pain grinds you down, day after day, month after month until you feel worthless. Not only that life is worthless, but you, yourself. I was minutes from giving up. I know that many of you have been to the same place. Please don't. Fight. For yourself, your loved ones - and the rest of us. Sometimes it feels completely futile to keep going, but help may come with the morning. Research is going on, things are happening i medical circles. I was lucky. These days I take daytime attacks with oxygen. It doesn't stop the devil, but makes him (or is it her?) endurable. An hour before going to bed I take Sumatriptan (Imigran 100 mg) and a sleeping pill. 8 hours of good sleep helps enormously - night attacks were by far the worst. Remission is near just now, I can feel it, and hope for a good, painfree summer. My love to you all ... because I know. Erik
Erik Braathen <vjournal@online.no>
Asker, Norway
Monday, June 28, 1999 at 03:06:57 (EDT)

Hi, I have had CH since 1983. I am now in my 7th attack, and it has lasted 19 weeks so far. I am taking Ultram and oxygen every night which usually helps me win the headache wars I have during the nights, however sometimes the headaches are too strong and I lose the war. It is good for me to find your site since so many friends and family have no idea what this hell is like. I can't adequately describe my nights, but I can see many of you out there know exactly what I go through! My husband understands and feels very helpless.
Sue Wells <SWells@pclv.com>
Las Vegas, NV USA
Monday, June 28, 1999 at 03:01:48 (EDT)

I have been diagnosed with cluster-headaches. I have never had migraines before and I just turned 40. A week and a half ago I was standing in line at Lowes when I felt like someone had kicked me on the side of my head. It was sudden and over quick (I passed out in the car and woke up 1/2 hour later with only a dull headache for a couple of days) but my eyelid has drooped on that side and my vision is double (even now?!?). The nuero-ophthalmologist says the droop/double vision may be permanent. HOW IS THIS POSSIBLE? Has anyone else had migraines start so late in life? Has anyone had permanent vision damage from one? Please write. My e-mail address is dkf@ontario.com. Thanks. I am scared.
Denice Freeman <dkf@ontario.com>
Muncie, IN USA
Sunday, June 27, 1999 at 23:07:17 (EDT)

Fellow suffers its been 15 yrs Spent with the Demon @ once again He's back. This time he seems a little more intense.He came back on st patricks day 99 stoped at the bar had a couple of beers and there he was that little pain in the neck that starts the ball rolling the times that he shows up havent been to bad untill a couple of weeks ago I decided to quit caffine cold turkey that was one hell of a mistake the demon came right now with some of the worse painI have ever had. I am back on the caffine today no demon yet.
Monte Kirby <mkirby100@hotmail.com>
woodbury, mn wash
Sunday, June 27, 1999 at 20:01:36 (EDT)

Great to see that this item gets the attention it's deserve. In our country the use of oxygen is coming more common now. And I hear there are great results. Are there any studies available on the net.
Hans van Gerwen <gerwenh@iae.nl>
Nuenen, The Netherlands
Saturday, June 26, 1999 at 18:54:53 (EDT)

I can't tell you how glad I am to have found this site!
Kees Engel <c.engel@multiweb.nl>
Alkmaar, The Netherlands
Saturday, June 26, 1999 at 15:57:10 (EDT)

Hello. I'm 44, and am in the middle of a cycle. Let me say straight away that I get almost immediate relief with sumatriptan injected sub-cutaneously, which here in the UK is marketed as Imigran Subject. The injector is about the size of a fat ballpoint pen, with a button on top. This is kept in a box which also holds two little spring-loaded hypodermics with the correct dosage. You load the little hypodermic into the open end of the pen (you don't see the needle), hold the end of the pen against your thigh, press the button, and -POP!- the spring presses a little plunger which injects the dosage. You might feel a little sting as it goes in, but hey - what's that compared to what we're used to? The needle only penetrates by a few millimetres. It's all very Star Trek. Imigran is usually prescribed for migraine, although it is also indicated for CH as well. There are also tablets, but the injection is the only thing that works for me. I've suffered since I hit my early twenties. At first I thought it was a brain tumour. Then a bad tooth. Then another brain tumour -- and then after about five years they went away. I couldn't believe it when they came back a few years later. They've come and gone over the years without rhyme or reason; my various doctors have all tried different (and indifferent) approaches, but none of them have worked like Imigran, prescribed by my latest doc a few years ago. The problem is: the Imigran provides almost immediate relief from the pain, which is great -- it goes completely in ten to fifteen minutes -- but still the headaches seem to be able to break through again as the protecting effect of the medication wears off, after about six hours. I'm worried about over-medicating. Imigran, being mainly for migraine, should only be used twice in 24 hours, but this latest cycle of mine is proving particularly vicious -- I'm getting one at 1:30am, then (thank God) a gap right through till 3pm, with a follow-up at 8:15pm. I inject for the 1:30am, which means I can get at least some sleep, knowing that on this cycle there won't be one in the morning. But then the 3pm disrupts my working day, so I have to inject again rather than sit it out. Then when the 8:15pm hits, I'm thinking I shouldn't inject immediately because it's too close to the previous injection. But if I postpone that injection it'll be pushed closer to the anticipated 1:30am injection. The Imigran box is quite specific, with bold print telling me "do NOT use more than TWO injections in twenty-four hours". But still -- frankly, I'm at the point where I'm prepared to take the risk (and I'm not even sure what I'm risking); however, I'm sure you'll understand why. The reason I found this site today was because I decided to surf around looking for info on "migraine"; then for the first time I realised what I'm actually suffering are more properly called Cluster Headaches; and here I am. I've only skimmed the surface of the site so far but will be delving into every nook and cranny. I'll also be going back to my doctor this week, armed with all the literature I've uncovered on the web. What a fantastic resource. I think there are cheaper alternatives to Imigran -- the high cost of the injections to the hard-pressed UK National Health Service is a bone of contention between me and the doctor's receptionist, who always has an eye on the centre's budget and occasionally refuses to refresh a prescription until I see the doc again -- I have experienced a wait of a week *without my medication to hand* because of that woman and her wicked ways. I'm sorry, but that's how I feel about her: witholding the only medication that works for me on the grounds of cost to the taxpayer is, to me, unforgiveable -- particularly as I *am* one of those taxpayers! But that's part of our problem, isn't it? People just don't understand how intense the pain can be -- even doctors (and their receptionists). This site is just what I needed, though it's moved me close to tears, having found such a precious port in a storm -- so thank you to all of you behind it. I'll be back often! Bob Kingsley.
Bob Kingsley <bobkingsley@winning.com>
Shaftesbury, Dorset UK
Saturday, June 26, 1999 at 08:25:39 (EDT)

I am 33 and suffer from CH for the past 8 years. I've tried everything possible, some tricks alleviate these nightmare headaches slightly but never stopped them dead. As all you sufferers know you'll try anything out of desperation. Well my doctor just as a last resort prescribed for me, a low blood pressure client, some high blood pressure medication. For the first time this period of hell lasted only a week. Whithin two days this medication stopped these headaches dead (as I sometimes whished to be) in their tracks. I used 40mg of PUR-BLOKA twice daily. I hope this info would help some of you out there. I will keep on using this for the next month because my fear for recurrence is too great. Although the world may not understand or merely comprehend this agony, always know you are not alone and we will keep on trying to beat this together.
Jasmyn <jasmyn@iafrica.com>
Richardsbay, KZN SA
Saturday, June 26, 1999 at 07:27:03 (EDT)

Hello. Glad to see that we CH patients have a site to trade information. I've been experiencing cluster storms for the past 10 years, usually beginning in the late fall and lasting until summer. I've been prescribed just about every pain reliever available but found that none work any better than oxygen and an ice pack. Verapamil used to be helpful in preventing attacks, but that doesn't seem to have much effect any more. Sometimes hydrating with 3-4 glasses of water before bed will help prevent an attack. Look forward to learning more, and hopefully sharing more, with others in the same situation.
Bill Senger <billsenger@compuserve.com>
Avery, CA USA
Friday, June 25, 1999 at 16:52:13 (EDT)

I really enjoy this web site, I'm gonna have my dad check it out to. Both of us suffer from cluster headaches. I've had them for 6 years now, I'm 20. My father has had them for as long as I remember. I've tried every medicine known and still haven't found anything yet to help relieve the pain. I'm a Respiratory Therapist, so Oxygen is quite conveinant, but it does not help. Sometimes I can lay down and try and go to sleep and it will relive it until the next day. Many of nights I've begged my father to take me to ER, knowing they'll just give me a shot. Thanks for the web site.
Tonya Sapp <lacey3521@yahoo.com>
Leitchfield, KY USA
Friday, June 25, 1999 at 16:24:02 (EDT)

Hello. Although its been said before, this site is fantastic. Reading everyone's stories and confirming that I'm not suffering alone is certainly reassuring. I'm 28 and have had chronic CH for 9 years. I've tried all of the usual meds, seen a number of neurologists, went to a reknowned headache clinic, and even had two surgeries (radio frequency rhizotomy - they destroy parts of a nerve in your face. Figure this one out - I have no feeling in my right eye from the surgeries, put I still get headaches in that area as severe as ever..???) Oxygen works well sometimes, but due to my job and commute it is rarely feasible. The treatment I have been on is starting to lose its effectiveness so I'm affraid the long search for an effective (and safe, if possible, but I'll settle for effective) replacement starts anew. I'm sure I will be back to the site frequently to see how everyone is doing and to keep abreast of the latest treatments being tried.
Matt Wellen <matthew.j.wellen@slchicago.infonet.com>
Wheaton, IL USA
Friday, June 25, 1999 at 15:16:11 (EDT)

Hei all,this service is great!I am 40 years old and suffer since I am 17.It took 4 years to get a proper diagnosis.In german medicine this sickness wasn't existing!I went through all the procedures(like we all I guess),always close to get crazy,cause nobody believed in your pain or giving you absolutly wrong treatment.At the moment I am painfree since 12 months,knowing the monster will be back anytime.Reading your mails,its a trip through my own life.Fears about loosing my job,cant tell my boss,no more social contacts,or to think about "jumping out the window". For sudden relief we get "Sumatriptan" to inhale through the nose.I prefer( if I can arrange it)to use oxygen.Good results also possible with good old "aspirin".Never less then 1000mg oraly.750mg i.m.injection. All c.h.eads dont give up.Every period is coming to an end. Just for info about our so "high qualified" german wellfare system.Asking the "German society of Headaches" for help,they replyed:We are not dealing with ch., cause the most are wrong diagnosed,they are migraine patients.So name yourself as an migraine sufferer,then we gone help you! I learned to live with ch.and most time I do it "normaly".
Axel Bayer <axbys@hotmail.com>
Mainz, Rheinland-Pfalz Germany
Friday, June 25, 1999 at 06:15:27 (EDT)

CH sufferer now for 30 years and there appears to be no relief in sight.The cycles have changed over the years ie.from 6 mos on and 6mos of to the cycle I am now in. This one started after I had been CH free for 5 YEARS!!! I truly hope I don't have 4.5 years to go to finish this cycle,but you never know.I have been on all of the medications you have written about on the message board with varying degrees of success and failure.I have come to the conclusion that the monster is going to run it's course no matter what you do to try and change it. The most effective treatment for all those years of suffering has been plain old oxygen! ! ! Get on it quick enough and you will abate the CH. However I also think that you are delaying the inevitable.Thew cluster cycles are going to run their full course.I'm not trying to paint a picture of doom here because I continue to hope that there will be a remedy soon and I pray for that.I am now 69 and still full of hope for all of us.I just got over a #7 and thought you might like my two cents worth thrown in.I have found that you just have to learn to live with CH's and pray that the one just ended was the last one ever! ! ! Good luck to you all and GOD BLESS!!!!
Phil M. <Hcastle001@aol.com>
Loudon, TN USA
Friday, June 25, 1999 at 01:24:02 (EDT)

Hello, I just found your site. I was not able to find any information regarding fragrance products and their relation to headaches in general. I was wondering if anyone ever sought information on the use of fragrance products in regards to headaches? It amazed me that my searches for "fragrance," "perfume," "scent," "cologne," and "fabric softener" all turned up 0 documents. Adverse reactions could be to one's own, or secondhand -- including from neighbor's fabric softener. Next time you get a headache zapping you, try to remember if someone just entered your area who was wearing a scented product -- an individual doesnot have to absolutely reek to cause headaches! Fragrances are insidious and the mainstream medical industry doctors have not yet comprehended the fact that fragrances are toxic chemical products, quite capable of triggering headaches. Fragrances are released to market without necessary testing. They are made by an unregulated industry (See FDA http://vm.cfsan.fda.gov/~dms/cos-206.html ) and are further protected by trade secret laws which means that you and your doctor are denied information regarding the chemicals used to make a particular fragrance product. The trade secret laws are to the fragrance industry as inerts (a misnomer!) are to the pesticide industry -- words to hide toxics behind. Fragrances are found in commonly used products for cleaning, maintenance (includng pesticides) and personal care. Included are dish and clothes detergents, fabric softeners, toothpaste, soap, disposable diapers for children and adults, shampoos, conditioners, lotions, kitty litter, air "fresheners" (another misnomer!) trash bags . . . colognes and perfumes. Fragrances are so commonly used by people that one doesn't think of them as toxic chemicals. But they are! And they pollute the indoor air for all -- and we spend around 90% of our time indoors! Fragrances can cause adverse health effects when used by self or others. They are volatile organic compounds and the toxins can enter the body through inhalation and via skin absorption. They get into the blood stream and affect traget organs. They also pass the blood-brain barrier. Fragrance products are known to trigger headaches. Fragrances are also an acknowledged trigger of asthma -- see web sites of ALA (http://www.lungusa.org/press/association/asnairt.html ) and AMA: What Triggers Asthma? Education and Support Center http://www.ama-assn.org/special/asthma/support/educate/triggers.htm Fragrances are toxic chemical products fully capable of causing the adverse health effects that have been and are being reported. It is past time for the facts to be reported to the people. Oxygen is known to help with cluster headaches -- I use it when zapped by someone's signature scent. It wipes out the headache fairly quickly AND safely, without drugs. If anyone would like more information on fragrance products, and the adverse health effects, visit http://www.ameliaww.com/fpin/fpin.htm -- barb
barb wilkie <wilworks@lanminds.com>
berkeley, ca USA
Thursday, June 24, 1999 at 14:50:44 (EDT)

I am very thankful to all the people who have made this site possible. I am a cluster sufferer, who until now did not have anyone to talk to that truly understands the physical and emotional effects of the syndrome. Thank you so much for sharing this information.!
Paul Trotto <PT102895@aol.com>
Rochester, NY USA
Thursday, June 24, 1999 at 12:01:15 (EDT)

I found you! I'm a 47 year old wife and mother of three (ages 18, 19, & 20), who has suffered from CH for almost 18 years now. I get them every night at about the same time (6:30-7:00) for 4-6 weeks in the spring and the fall. By the time I feel it coming on, it is pointless to take any pain medication. The headache keeps getting worse and worse until I can barely stand it and then slowly subsides. From beginning to end is about a half hour to 45 minutes. But then...I am wasted. I quit smoking 9 months ago so guess that wasn't a contributer. I've been having them now for a couple weeks again. I have to run to work now. So happy I found you all! Can't wait to search this site. Later!
Barb <CWestre@aol.com>
St. Louis, MO USA
Thursday, June 24, 1999 at 09:38:42 (EDT)

In remission for almost a year but happy to know I have a place to visit should I need to. Great idea!!
Robert J. Bacher
USA
Thursday, June 24, 1999 at 07:36:28 (EDT)

Im glad to have found you all im sorry that we all suffer I have head aches once maybe twice a day over a period of 8weeks to 16weeks at this time of the year every year for the last five years my doctor last year told me it was CH and prescribed a migraine tablet called naramig its no good to me so i take ibufren with it the bouts last from half hour to an hour after taking the tablets the pain is EXtremly bad i am glad to read all this info and will be taking it to my doc to get somthing better a Great big thanks to you all on this site
tony < anthony@aparfitt.freeserve.co.uk >
cardiff, gwent wales
Wednesday, June 23, 1999 at 17:32:37 (EDT)

Je suis atteint de la céphalée de horton depuis 21 ans et j'ai fondé l'association de la céphalée de horton au Québec bientôt ma page Web sera disponible pour aider les gens qui en souffre
André Poirier <apsl@videotron.ca>
Lachenaie, Québec Canada
Wednesday, June 23, 1999 at 16:07:59 (EDT)

Je suis atteint de la céphalée de horton depuis 21 ans et j'ai fondé l'association de la céphalée de horton au Québec bientôt ma page Web sera disponible pour aider les gens qui en souffre
André Poirier <apsl@videotron.ca>
Lachenaie, Québec Canada
Wednesday, June 23, 1999 at 16:07:23 (EDT)

Je suis atteint de la céphalée de horton depuis 21 ans et j'ai fondé l'association de la céphalée de horton au Québec bientôt ma page Web sera disponible pour aider les gens qui en souffre
André Poirier <apsl@videotron.ca>
Lachenaie, Québec Canada
Wednesday, June 23, 1999 at 16:07:23 (EDT)

ive been suffering from headaches for about 8 years now. previously treated with prescription narcotics. recently diagnosed as cluster headaches. current doctor concerned with rebound effect of analgesic usage so currently taking nothing.
Bob <roblee5220@msn.com>
TN USA
Wednesday, June 23, 1999 at 15:55:55 (EDT)

I am 35 years old and have been suffering from CH since I was 9, only I did not know it had a name. I was diagnosed last Friday, and immediately hit the web for info, finding this site. I am in the 3rd week of a cycle, after a 5 year remission. When you see "Dave H." on the message board, that will be me, and I'm sure you will be seeing me there. Thanks for being here and I'm both sad and glad that I'm not alone.
Dave Hendricks <hendrick@firetrail.com>
Stanwood, WA USA
Wednesday, June 23, 1999 at 14:17:30 (EDT)

I cant believe I didnt find you before. I guess I just believed that I was alone. Now that I know Im not I feel so much better. It doesnt help the pain in my head, but it does help the pain in my heart.
christine <Joweav7@AOL.com>
sewell, NJ USA
Wednesday, June 23, 1999 at 13:07:35 (EDT)

I have been suffering now for 19 years. I am so glad to have found this site It has helpef me in ways that I never new exsisted
Wes Mussato <wmussato@towncore.com>
Delta, bc Canada
Wednesday, June 23, 1999 at 05:44:07 (EDT)

My husbands cluster headaches started 2 weeks ago. The strange thing is that the last 7 years, every once in awhile he would get that sharp pain, and then it would go away. We never knew that it was probably cluster headaches. I can't bear to see him in pain and it's only been 2 weeks. After reading the experiances of others I can only hope his only lasts a short time. The doctor started him on Prednisone and he just finished his pill yesterday. The medicine makes him feel funny.....he says it's hard to describe, except that the fact he can feel the pain come on but there is no sharp pain. He thinks as he tapered off the medication it gave him a regular headache. I wish there was a site for the loved ones who do not suffer, but, try to give them support. I have never felt so helpless. My thoughts are with all of you who have to go through this agonizing pain.
Renee Brose <reneebrose@worldnet.att.net>
Fremont, CA USA
Wednesday, June 23, 1999 at 00:55:59 (EDT)

I am 24 and have been suffering from clusters for about four years now. Not only are the clusters painful enough, but they deprived me of having "the normal college experience." Everytime I agreed to do something with friends I feared that little feeling behind my right eye that was going to destroy my evening. Finally after four years my friends and family are realizing the severity of these headaches. I really hope I don't have to live the rest of my life with a nasal spray in my pocket and a full oxygen tank in my house.
Christopher Smith <brtiger24@hotmail.com>
Baton Rouge, LA USA
Wednesday, June 23, 1999 at 00:43:51 (EDT)

Hello I am a 31 yo male Registered Nurse and i have suffered with chronic CH for 3 years. I have been aggressively treated and been on several medications to prevent my headaches. So far no med will prevent or significantly decrease the headache except Prednisone(which i can stay on for a short time only). Oxygen has been the best thing thats happened for me since the onset. 8-10L via mask usually aborts entirely. Still trying to find the perfect drug to PREVENT attacks altogether. Does anyone have any info on Topamax relating to clusters??? This is the latest high dollar drug my headache specialist has me on.He said he went to a seminar on the topic but i cant find a word on the topic. Finally, I trully empathize with each and every one of you CH sufferer's as this must be the worst pair humans must be made to continually endure. I would be glad to help with graduate research or answer any questions anyone might have for me... Glad i found this GREAT site!
Andrew Schwinn <andrews@networksplus.net>
Topeka, Ks USA
Tuesday, June 22, 1999 at 20:34:00 (EDT)

Hello all
Andrew Schwinn <Andrews@networksplus.net>
Topeka, Ks USA
Tuesday, June 22, 1999 at 20:00:49 (EDT)

Hi, My fiance has cronic clusters and I really don't know how I can help him. We have gone to doctors and they don't know whats going on. Now they are getting worse and all my attempts seem futile. I hate to see him in pain, if you suffer I am turly sorry. Nobody deserves that pain. I just wish there was more I could do.
Elizabeth Barnett <ebarnett@deanmachinery.com>
Roswell, GA USA
Tuesday, June 22, 1999 at 17:34:25 (EDT)

I am a 34 year old male, and have experienced clusters for about 10 years. I am currently starting a cycle, after 2 pain-free years (of course, I told myself that I was done, and they wouldn't come back...ha!). I was lucky enough, during my 2nd episode, to stumble across a great neurologist who quickly diagnosed my problem. I visit him every year or so now, when I feel a cycle starting, even though I've moved 100 miles away. I am so glad to have found this site...I don't feel so alone now. I also feel lucky not to suffer to the extent that so many of you do. My thoughts and prayers are with you all. Scott
Scott Shaw <scott.m.shaw@worldnet.att.net>
Dayton, OH USA
Tuesday, June 22, 1999 at 16:28:29 (EDT)

Great Web Site! Going through a mini-bout of CH at the moment after a three year respite. I guess I'm lucky to be on a three year cycle. This is the sixth event in the last eighteen years, each event lasting for one-two months. My father suffered into his 70's. My brother also suffers from the "monster" and is also having a bout at the present time. Surprising incidence of hereditary CH relationship compared with survey data. I have only found three treatments that give any relief. Oxygen at first body wave and eye-twinge, Stadol lidocaine nasal spray, and tightly wrapped ice packs. This is a great support system and does ease the pain of isolation. I truly wish you all well.
Steve Bear
Key West, FL USA
Tuesday, June 22, 1999 at 13:47:23 (EDT)

An excellent site that I will bookmark. Have not had a visit from the demon since last July-August 1998. Hope I can get by without a visit. My biggest problem was not knowing what was wrong and no emergency room could help me. Now that I know what it is; i at least fell sane.
Doug Goodman <Goodmanf@msn.com>
Lubbock, Tx USA
Monday, June 21, 1999 at 23:10:10 (EDT)

Nice to see a Web site that deals with this problem. I have suffered with cluster headaches for about 15 years. Kevin
Kevin Hoover <khoover@primeline.net>
Kincardine, On Canada
Monday, June 21, 1999 at 21:06:44 (EDT)

Good to know that this site is getting larger. I stop by every so often , more often when am in the CH period. Such a great sight especially if you just started getting clusters and your family and friends don't understand. Wish it was around for me some 20 years ago.
mike <mikezav1@aol.com>
ny USA
Monday, June 21, 1999 at 18:24:41 (EDT)

I have had cluster attacks for the last 6 years twice a year and lasts for 8 weeks and it is slowly driving me mad
bob shipway <sophie4@tesconet.com>
london, uk
Monday, June 21, 1999 at 18:04:59 (EDT)

I have suffered from cluster headaches for approx. 13 years, but they have improved GREATLY over the past five years. Please, if you haven't talked to a chiropractor and massage therapist, do try to - they can work wonders. I have also heard, and may try it, that acupuncture is one of the best treatments for cluster sufferers.
merri james <mjames@ftdi.com>
USA
Monday, June 21, 1999 at 12:35:15 (EDT)

I have had cluster headaches for 22 years. The BEST treatment that I've recieved is Sansert. The negative is having to go off it for 30 days after a painfree 6 months.
John Smoller <Jsmoller@harding.com>
Denver, co USA
Monday, June 21, 1999 at 11:42:30 (EDT)

I am a severe migraine patient
Wim Kniep <W.Kniep@ubvu.vu.nl>
Amsterdam, Netherlands
Monday, June 21, 1999 at 10:37:57 (EDT)

Another Cluster Headache sufferer.
Don Fowler <y2kdon@msn.com>
Seminole, FL USA
Monday, June 21, 1999 at 08:15:15 (EDT)

thanks dj;glad you were well enough to make this page.I've had good results with betacaratene,believe it or not.
BEN BUSBEE <TEELOCK@WEBTV.NET>
MEMPHIS, TN USA
Sunday, June 20, 1999 at 16:15:40 (EDT)

I found this site today and it's great to see I'm not alone in the CH world.
Larry Ferrand <wizzard@onslowonline.net>
hubert, nc USA
Saturday, June 19, 1999 at 22:15:47 (EDT)

DJ, I can't thank you enough for this site! After being treated skeptically by friends and family that have no idea what CHs are like I REALLY needed this place. The information and friendliness of of the people is phenomenal! Keep up the great work!
Nikki <ramoth@enteract.com>
Schaumburg, IL USA
Saturday, June 19, 1999 at 15:37:43 (EDT)

It's wonderful to find a site like this! I began suffering with cluster headaches when I was 16 years old. It took a decade to get them diagnosed! They went away for a decade, and now the demon are back. I look forward to being able to share what helps...and what doesn't!
Betty Vreeland <Vreelael@home.com>
Monroe, NJ USA
Saturday, June 19, 1999 at 09:43:51 (EDT)

Hi, I agree with you all, this is a fantastic site, it is great to have a place to share and not be so alone. I suffer from chronic migraines and post-traumatic (I have had two surguries on my skull)cluster headaches - which means that I have a continuous migraine headache with periods of these devil clusters, eposodic, about 3-4 a day for about 3 months then off for a bit then on - it's quite a roller coaster. I noticed that noone here has mentioned I.V. Histamine treatments for their clusters. It was a God send to me, twice! I had chronic clusters for about 5 years until they were diagnosed at the Diamond Headache Clinic in Chicago where I had gone to for some relief from the migraines. In an inpatient treatment, they gave me 21 bags of histamine (to desensitize my system to histamine) over a period of almost two weeks. I was cluster free for about a year, when they started again, I went back for another treatment, again they were relieved. I do still get them, but not with the frequency that I had before these treatments and only for a few months at a time. Also - while I have been pregnant -NO clusters at all. Since I don't want a million more kids, I am anxious to hear all that you all have to contribute and all that this site offers. Thanks and God bless all of you in this battle!
Kim Marsh <Momkimi@aol.com>
Oklahoma City, OK USA
Saturday, June 19, 1999 at 01:14:33 (EDT)

My name is Dawn JOhnson.My last entry was on Dec.30th so I decided to write again.I'm a thirty year old single mother that has suffered with clusters since age 8.If anyone read my first entry my 12 year old son still runs the halls with me at night holding ice packs and changing them when needed.Poor guy had to quit his baseball game because I had to go to the hospital Monday and again Tuesday.He's 12 going on 20 because of these damn things.In January I was diagnosed with "possible" kidney disease(yes I'm getting more runarounds!)I've had three surgeries to figure out exactly what it is.Has anyone heard of getting another illness or disease from all the medication one is on????I'm just wondering if it's a possibility.Any input would be greatly appreciated.Thanks. is Dawn Johnson.I'm a 30 year old
Dawn Johnson <dawners9@ivillage.com>
St. Paul, MN USA
Friday, June 18, 1999 at 23:45:35 (EDT)

LINDSEY SMITH Send me your E - Mail add. would like to contact you Bill
Bill <mod.1k@juno.com >
USA
Friday, June 18, 1999 at 14:25:16 (EDT)

I'm a 29 year old male and I've been suffering with cluster headaches for about four years. After a year without a cluster I thought I'd escaped. But they're back...and bigger than ever. Maybe this'll be the last?
Ian Jones <ian@zapsystems.co.uk>
Basingstoke, United Kingdom
Friday, June 18, 1999 at 12:04:19 (EDT)

Thank you for this site. It is a Godsend.
Stephen Michl <michl@erols.com>
Lorton, VA USA
Thursday, June 17, 1999 at 22:54:57 (EDT)

Thanks for hosting this site. Good to know I'm not alone.
Chris Wood <cwood8656@aol.com>
DeKalb, IL USA
Thursday, June 17, 1999 at 21:31:31 (EDT)

Please, if someone has something else besides oxygen to control or stop these headaches, let me know. I have been suffering this bout for about 2 months.
Lindsey Smith
USA
Thursday, June 17, 1999 at 21:11:20 (EDT)

I am a 27 yr old female who has suffered from cluster headaches since i was 19. I am not in a cluster at present but have experienced some twinges over the past few weeks. I have been working as a bank teller for the past six months and have not told my employer about my headaches, i am worried about how i will cope at work. i would be interested hearing from anyone who can relate to this.
kellie vince <dionvince@hotmail.co.nz>
waitara, taranaki new zealand
Thursday, June 17, 1999 at 20:23:49 (EDT)

I am a 27 yr old female who has suffered from cluster headaches since i was 19. I am not in a cluster at present but have experienced some twinges over the past few weeks. I have been working as a bank teller for the past six months and have not told my employer about my headaches, i am worried about how i will cope at work. i would be interested hearing from anyone who can relate to this.
kellie vince <dionvince@hotmail.co.nz>
waitara, taranaki new zealand
Thursday, June 17, 1999 at 20:07:06 (EDT)

I have had two episodes of cluster headaches. The first was July, 1997 and I went to the emergency room where I was given a spinal tap and heavy doses of narcotic drugs which did not work. Over the next six weeks I had 5-7 migraines every day and lost almost twenty pounds which I did not need to lose. I was given a cat scan, a MRI, blood work and seen in the ER numerous times where I was told to see a psychiatrist and given more narcotics. I finally got an appointment with a neurologist (who was the ONLY person that thought to try imitrex)who hospitilized me and treated me with extremely painful intravenous drugs: DHE (Dihydroergotamine), Depakote Divalproex, Solumedrol, Methylpredisolone. Imitrex was the most wonderful drug in the world, but I required many more injections than I could get my insurance company to pay for. My second attack was in March, 1999 two weeks after the birth of my son. I kept the injector by my bed but I didn't use it because I wanted to breastfeed. They only thing that brought me relief was to take Excedrin for Migraines every three hours which resulted in stomachaches but kept my headache tolerable although they were always there. They scared my husband so bad that he tried to give me an injection! These headaches are truly the most awful thing that has ever happened to me and the worst part is being so helpless. I am very excited to have a place to go for information and validation especially after all the doctors telling me I was crazy... thank you!
Karyn Gramando <Gramando@aol.com>
Hampton, VA USA
Thursday, June 17, 1999 at 19:55:23 (EDT)

I'm suffering from chronical headackes since I was 11 years old and I will be 44 soon. After trying many treatment with very little result - I still have between 11 to 15 days with migraine during the month. Who could give me information on TENS. Where to have it done by a doctor, because in the meantime, I found a little machine which I tried with little result and would like to know if a profesional one is more efficient. Thank you in advance.
Florence Blancher <FBlancher@uncc.ch>
Geneva, Switzerland
Thursday, June 17, 1999 at 04:14:53 (EDT)

"Today is the first day of the rest of my life" thanks to finding ths link tonight. After a very,very frustrating Dr. apt. I came home and cried. I have learned so much in just a few hours of reading your posts. Thank you for being here!!! I'll be here every day - head permitting!! A big THANK YOU to everyone - Torri
Torri <torri1@webtv.net>
Loma Linda, CA USA
Thursday, June 17, 1999 at 03:40:00 (EDT)

Hi everyone, Today I stumbled across this site for the first time and I thank God that I am not alone. For years I have suffered with (CH) and have seen many doctors and specialist. I have had 2 brain scans because know one knew what I was going through and so I could only assume that something was wrong with my brain. The scan proved to be negative. Eventually I was diagnosed as a (CH) sufferer. I always hoped that I would one day meet or talk to someone else who could identify with what I have been going through all these years. I am grateful to my brother for suggesting to me earlier today to surf the Net in the hope that there just might be some information about (CH) little did I know that there are so many CH sufferers. Today is one of my better days I am hoping that tomorrow will be even better for not just me but all of us take care all simon
Simon <simon@wood-st-cogic.prestel.co.uk>
London, England
Wednesday, June 16, 1999 at 15:42:46 (EDT)

june 16th 1999 first signes are here and looking foward to all the fun that will be coming to me over the next 8 weeks. no familly days outs and oxygen as my lover , goes every where i go
brian greenhalgh <clunck@aol.com>
manchester, england
Wednesday, June 16, 1999 at 12:19:22 (EDT)

I am a long time sufferer of CH, and may be able to pass along some of my experience to my fellow sufferers.
Howard Michnick <rugman@dreamscape.com>
Oswego, NY USA
Wednesday, June 16, 1999 at 07:08:44 (EDT)

seems like i have had them forever. oxygen works best if i can catch them early enough.will they ever stop the pain lasts longer every time i get them up to8 hrs.
gregory fuchs <gregnbev@lni.net>
clinton, mi USA
Wednesday, June 16, 1999 at 06:23:00 (EDT)

I will be 40 soon and have had migraines for over 10 years now. However, they have gotten worse in the past year. I get one almost every day now. Imitrex works, but insurance will only allow 9 pills per month! I tried Depakote for a while. It worked at first, then quit - plus I was gaining weight while taking it. I would love to find something that would prevent migraines so that I could feel normal, instead of yucky all the time. It's hard to go to work every day feeling bad. I wish more doctors would come out of the dark ages concerning migraines and understand exactly what they are so we could get the help we need.
Susan Conway <sconway@tanet.net>
Oklahoma City, OK USA
Tuesday, June 15, 1999 at 21:43:47 (EDT)

I'm 60 and have had cluster headaches since i've been five or six years old with only a brief respite during my teens. God only knows the torture.
Marvin C Cruzan <mcruzan@mo-net.com>
Shell Knob, MO USA
Tuesday, June 15, 1999 at 21:30:28 (EDT)

I am 31 yrs. old. And have just about had enough. I was "diagnosed" with migraines when I was 9. The CH diagnosis came about a year ago. I have been ridiculed and called a liar. I was put into the hospital a couple of months ago for an arteriogram. They thought perhaps that something "physical" was causing these "headaches". Unfortunately the doctor "slipped" and disected a vetebral artery (in my head). They have me on blood thinners so I don't have a stroke. But that means that I can not take ANYTHING else. No imitrex (nasal, oral, or injectable), no Midrin, no Lithium, No amerge, No Zomig. I am at a complete loss. I don't know how to make this new doctor understand what I feel without sounding like a junky? Please help me. I think I will die here shortly. Has anyone found any hope?
DawnMarie <dmr53448@aol.com>
Coppell, TX USA
Tuesday, June 15, 1999 at 17:24:50 (EDT)

I don't suffer from cluster head aches but I get arthritis from the three brocken bones I've had. Sorry to all you pain sufferers (I never could spell that word) out there!!!
Melissa
USA
Tuesday, June 15, 1999 at 15:35:49 (EDT)

I suffer from terribly debilitating migraines, always on one side of head, usually right side. I am just recovering from one and it was very hard to function the last 3 days. I still have a very heavy feeling especially in my etes. Periodically I get a very sharp pain in the right side of my head. I know it is not over yet. This has been happening more and more again. I had a short reprieve while being treated fro Graves Disease and taking Proprananol. I am now off of that. People without these headaches never understand. It can be very frustrating.
Sandra Burn <sburn@sullivan.suny.edu>
Jeffersonville, NY USA
Tuesday, June 15, 1999 at 11:02:24 (EDT)

help i am going thr the worst seige i can remember ever having
brian <nygiant12@aol.com>
poway, ca USA
Tuesday, June 15, 1999 at 00:33:03 (EDT)

I am dating (1 mo) a man who suffers from cluster headaches; oxygen, pills, you name it. I thought I had done something wrong, but after reading all the comments I know it's not me. I will be visiting the site frequently to find out what I can to help him, 'cuz you see, I love him.
Marti Dickey <Mdickey@plcland.com>
newport beach, ca USA
Monday, June 14, 1999 at 17:05:34 (EDT)

hello everyone i have suffered with ch for about 12 yrs. i have seen all differant doctors and tryd dozens of treatments. my last cycle lasted about 9 monts with 3 or more headachs a day. i have been takeing verapimeal for yrs and now have started taking lithium. this combo seems to be the best by far. but, i started going to the tanning salon. within about 3 weeks my headachs went away. this last as long as i went every day. then i reach a small finacial slump and stoped going to the tanning salon. gess what my headachs came back. stoping going to the tanning salon was the only thig that i had done differant that i could think of that may cause the headachs to come back. so, i decided that the tanning salon was much cheeper than the drugs and did not make me have drug hangovers and went back. within 4 weeks my headachs went away. i now make shure that i go at least 3 times a week now and have only had a few stress induced ch. im now tanned and basicly headach free.
doug lutz <peganone@webtv.net>
new orleans, la USA
Monday, June 14, 1999 at 02:35:19 (EDT)

What a surprise to find a site with so much information and comments from so many other people. I have had these headaches for over ten years and they are so "variable" (different triggers, times of days, etc.) but the headache itself is ALWAYS the same, 30 minutes-never more or less-, always the left side of my head. Coworkers, friends and even doctors seem not to believe the *incredible* pain and how I can go back to normal a mere thirty minutes after expressing something so painful - I've read much about clusters and feel that I understand them well except for one thing ... how is it that these headaches end so abruptly? They start, peak, taper off and *voila* they're gone - how could that happen? Anyhow, thanks for taking the time to construct such an informational site! Mark St. Peter
Mark St. Peter <msp@centuryco.com>
Detroit, MI USA
Sunday, June 13, 1999 at 17:20:58 (EDT)

Great Website! Wish I'd found it a few years ago. Armed with knowledge, perhaps I could have steered my GP to a quicker diagnosis as I was treated with various blood press meds to no avail other than coincidental ending of an episode. Have had this condition for about 5 years (I'm 51) with the last 3 increasingly intense. Episodes last 4 to five months once a year with HAs once or twice a day lasting 30 to 45 min usually. New med cuts HA down to 10 min. after taking.
Mike Ellis <mikewellis@aol.com>
USA
Sunday, June 13, 1999 at 16:43:56 (EDT)

I have been suffering from cluster headaches since 1991. I am currently 30 years old. My clusters usually last 1-2 months, sometimes as many as 30 headaches in 1 month. I am currently taking a high dose of blood pressure medication for prevention, which is helping me to get a little relief. The imitrex injections and tablets work well for me, although after the headache I am still really drained. I feel for anyone who has these horrible headaches. I know the pain is so intense you really wonder if you will make it through the headaches. Thanks to this great website, I have learned a lot more about clusters.
Debra Nienstedt <rondeb@phoenix.net>
Brenham, TX USA
Sunday, June 13, 1999 at 15:05:12 (EDT)

I have been suffering from headaches for almost 8 years. It all started when I got pregnant for my first son. since then my headaches are more frequent along with the migranes. At this time in my life I feel that it is a constant thing, that I have a dull headache and depending on the day ect.,, how bad the headache wants to get. I am only 29 years old! It is getting depressing. If you have any informantion that you can mail me I appreciate it. My address is 4551 West Grand Blvd, Walker Mi. 49544 Thank you, Colleen .
Colleen J. Keller
Walker, MI USA
Sunday, June 13, 1999 at 10:43:13 (EDT)

I am 39 years old and only now, through reading your site, do I know what has been happening to me for about the last fifteen years. My clusters(as I now know) began with two weeks of agonising headaches in January 1980something. Then again the same pattern, including almost the same dates, for about ten years. They left me alone for the next few but boy are they back. I couldn't understand how something so painfull didn't kill me!. No one has too much sympathy when you have a headache they usually say 'bad headache, oh I get bad ones too!' as a man in the ninties I sometiimes get 'typical man, look how low his pain threshold is'. The headaches went last week after about three weeks of almost daily episodes. I scared the living daylights out of my new partner when she found me at 3am in the lounge wimpering like a dog as I braced myself aginst the pain and those dagger like flashes that join in with the pain that you naively thaught could not get worse. I heard the termm 'cluster headache for the first time earlier this month and I have all the classic features. I don't know what I should do about pain relief as at the moment I fill myself with asprin and other such stuff out of desparation and that makes me ill after the headache susides - besides which they don't work. I havn't seen a doctor about this at all yet.
Barrie Jones <barrie.jones1@virginet.co.uk.>
GB
Saturday, June 12, 1999 at 20:06:13 (EDT)

I am a 59 year old female and am in the process of enduring yet another attack of episodic cluster headaches. My attacks usely last about 6-7 weeks and have them at night usually between the hours of 8 and 10. This is my fifth episode of them. I refrain from talking to others about them as they think this is entirely weird and I am under some kind of stress to bring them on. It is good to know that others out there are writing so I know I am not alone. Recently I have found that my biggest form of relief is to press tightly on the nostril of the affected side and then sway or swing my body until the episodes start to diminish. I also try to practice relaxed breathing.
D.A. Baldwin <parkdale@asde.com>
Maryville, MO USA
Saturday, June 12, 1999 at 15:20:21 (EDT)

8 year sufferer, just went through a six week bout that seems to have ended about 3 days ago. I have found alot of useful info. on this site.
Tom Gardner <Tgardpony@aol.com>
girard, oh USA
Saturday, June 12, 1999 at 09:05:02 (EDT)

Started clusters at age 30, now at the ripe old age of 47. There have been times I wasn't sure I would make it or want to during episodes. 80 to 120 mg of predisone along with a nasal dhe helps to keep them under control. Curious though, if anyone has found or used feverfew, to help control clusters? Best of luck to all that suffer, keep the faith you will get through it.
Rich Swanson <rswanson@neetins.net>
Fertile, Ia USA
Saturday, June 12, 1999 at 08:26:08 (EDT)

I am considered a chronic CH sufferer. I have had CH for at least 6 years non stop. They are mainly triggered by drinks. Although I have had as many as five attackes in one day without a single drink. I have tried sansert, lidocaine, imitrex, to some degree of success. Now i am on lithium and that seems to be working where the sansert was not. The sansert worked for 2 six month periods and then all of a sudden didn't work. The lithium seems to be working so far (only 1 week now). At least i can sleep at night.
Gordon Hazell <bonanza@sinbad.net>
Anchorage, AK USA
Saturday, June 12, 1999 at 02:30:47 (EDT)

My mother is 15 year sufferer of CCH. I'm relatively new to this site and I'm looking for anything that could possibly help her. I've read a few good things about Ritalin. Has anyone else?
Frank <fsgrizzi@aol.com>
Rockville Centre, NY USA
Saturday, June 12, 1999 at 01:07:52 (EDT)

I have several cluster headaches a day and have not found any med's that have help so far. I have taken ones like maxalt,imitrex,amerge and cortisone shots in the neck.They only give short time relief and they are very expensive.I'm allergic to asprin in med's.If anyone can help me please write me at my e-mail address.THANK YOU
J. WOOD <champain@cnip.net>
walsenburg, co USA
Friday, June 11, 1999 at 23:50:43 (EDT)

Cluster sufferer for 15 years. Started out episodic, then went chronic for a couple of years. Now Episodic.
Sean F Scally <Supers1@aol.com>
Rocky Point, N Y USA
Friday, June 11, 1999 at 20:46:49 (EDT)

For 8 years my doctor has been treating my on and off headaches as sinus related....This last cluster has been much worse than all of the others and finally a neurologist diagnosed them as CH. I'm on my third day of Depakote and feel better already! This site has been a major help to me. Thanks!
Stuart <keeshin@suba.com>
Chicago, IL USA
Friday, June 11, 1999 at 20:20:56 (EDT)

Hola sufridores. Thanks for this web. I´m diary internet user from years, and never feel as happy for finding a web like today. I thought I was mad. None doc told me what I had. My family, friends, ... now they´ll believe me. ... and I thought I was mad for cry so much, for wish die sometimes. Gracias, and I didn´t know about Oxygen till yesterday. Now, I always stay closer than 1 meter form my Tank. And forgotted where are my Imigran (you say Imitrex) All together for kill this devil, or kill the doctors !!!!
carlos <ccb@tnet.es>
oviedo, as spain
Friday, June 11, 1999 at 08:59:46 (EDT)

Hello!! I am 20 years old and I have suffered with cluster headaches since I was 14 years old. If it wasn't for NAPROSEN 500MG,, I don't know what I would do. I don't know why any of you use naprosen, it is great once it works into your system. Imitrex works good too,, the nasal spay is alot quicker to stop the pain..but WITH NAPROSEN 500MG THERE IS NO MORE PAIN,,just 2 a day and your on your way..
Sheldon Jenkins <sjenkins@dido.com>
Miami, MO USA
Friday, June 11, 1999 at 00:23:48 (EDT)

I've been eligible for membership in this club for twenty-five years, and just now found it. I've read the personal accounts, and it all sounds horribly familiar. I look forward to frequent visits to this oasis, to learn from your experiences and to share some of mine. Good luck to us all.
Dan Dittemore <Dittemore@worldnet.att.net>
Des Moines, IA USA
Thursday, June 10, 1999 at 22:26:58 (EDT)

I just found this website as a friend of mine was investigating cluster headaches on the web for me. The acticles I have read are an inspiration to me as I now know that there are many people attempting to combat and overcome the horrible cluster headaches.
Mary Villella <Mary.Villella@niagaracounty.com>
Lockport, NY USA
Thursday, June 10, 1999 at 10:54:08 (EDT)

Thanks to all for a long-needed site and all the messages. 15 yr sufferer (onset at 30 y/o) with (typically) 4-6 wk bouts every 2-3 yrs. periods of remission seem to be getting longer and intensity and duration are either shortening or my pain tolerance is increasing. On the other hand, this started with 1/day and I am having 3-5/day during this current 3 wk old bout. First treated with Prednisone (virtually no effect), then Sansert (works fine, but takes 10-14 days to kick in and major heart attack risk after 6 months continuous usage). Currently on Imitrex tabs-the only thing in the world I fear more than CH are injections and could never inject myself. Had a sample Imitrex inhaler which worked good, as well as samples of Amerge, which is also by Glaxo-Welcome and made for those of us who don't respond to Imitrex. Okay, clinical details for those interested--right temple, with stabbing pain on back of right eye, often leading to pain in right molar area, similar to an abcess. Lasts anywhere from 10-60 minutes. Responds to Imitrex (usually) IF taken prior to onset of the severe pain. I get a 'warning sign' of increased pressure in the right temple that gives me about 2 minutes to take the meds.Alcohol will definitely trigger a CH, but only during an episode. During periods of remission, the only sensitivity I have to alcohol is that I get 'normal' headaches from more than 1 glass of red wine. Sulfite related?? Slightly higher tolerance to white wine. Well, thats enough site-hogging for me, I guess. Will gladly converse with anyone who wishes to email. Thanks again-so great to talk with folks who understand this and don't think I'm exaggerating about the intensity of the pain and the debilitating aspects of this affliction.
Todd Valentini <tvalentini@fmtc.org>
Jacksonville, Fl USA
Thursday, June 10, 1999 at 09:05:17 (EDT)

Great site. I am 46 year old male sufferring for 10+ years. Thank God for Imitrex. Also take with Duradrin. Generally can feel them coming on and if I take them soon enough can limit the pain to 10 to 15 minutes. We also use ice packs and caffine. Learned that from my Mom who suffers from migranes. My clusters generally last less than two weeks and happen about once a year. If I don't catch them in time the pain is incredible as you all know. I do find that walking or exercising can help. I can not find a corelation to anything; alcohol, stress, caffine or lack thereof? I have been having 1 or 2 per day for the last 10 days. Thought it was alcohol so I stopped drinking - still had them. Have increased and decreased caffine - still had them. Have had stressful workdays and relaxing weekends with the kids - still had them. They will soon go away and not be back for a year plus. Who knows? I love the site and can appreciate how all my fellow suffers feel. Hang in there - they do go away eventually.
Phil Ross <ross@iname.com>
Columbus, OH USA
Wednesday, June 09, 1999 at 23:13:01 (EDT)

CH for years I am now 68 I would like to get in touch with JOHN HOWARD from Wisconsin, USA
Bill Kimmes <mod.1k@juno.com>
Superior, wi USA
Wednesday, June 09, 1999 at 21:31:18 (EDT)

Hi all. Thank you for this web site! I, too, am back in the thick of a sustained bout after 2.5 years of being CH-free. They started 26 years ago. Semi-seasonal, typically leftside, starts 2am, goes till about 10 am every hour or so, then back on again by the hour from about 3pm to 9 pm. Thought I had "outgrown" them after 26 years. Was Tx'd with prednisone, ergotomine, sansert, and lithium about 20 years ago. Of the prescribed meds, only the cortisone shots helped break the cycle. Being young and a little wild back then, I also used amphetamines (diet pills) from friends. These helped amazingly well as a prophylaxis (preventative). Since then, I've gone without any meds all these years. And the pain free years I attributed to quitting smoking. When I did get them (as now), I would do pushups, which seems to immediately relieve the pain (but only while doing the pushups). Then, I roll on my head (can only do so many pushups :-) So, I noticed there has not been much discussion of late about Ritalin. I've just been to my family doctor (these are worse than they've been in years) and he's given me prednisone tabs. Hope they still work. Also gave me Imitrex tabs, but it sounds like, from the messages at this site, that the tabs may be too slow in their action to help in time. Well, wish me luck on that one. Anyway, he's very understanding and says we have lots of choices of meds (including Ridalin) if our initial efforts don't work. I'm interested in the causes and processes of CH, too. Especially interesting is the research on circadian rhythms and central brain processes, etc. Well, thanks again for being here. Everyone please take care.
John Howard
WI USA
Wednesday, June 09, 1999 at 18:26:30 (EDT)

I have found that using depacote has dropped my migraines from 2-3 a week to 2-3 a month!!!! a miracle!!!
don luna <dluna@tamucc.edu>
Corpus Christi, TX USA
Wednesday, June 09, 1999 at 15:15:56 (EDT)

My wife has just gone through 3/4 days of excruciating agony She was scared to death as was I. Only after seeing a specialist has she been diagnosed as a cluster migraine sufferer. An affliction of which neither I nor my wife were aware. I'm just trying to find out as much info as possible, and some means of relieving the pain the next time... Thankyou for setting up this Web Page.
Dave Beever <dbeever@uk.mdis.com>
Bristol, England
Wednesday, June 09, 1999 at 14:52:27 (EDT)

I've suffered from cluster attacks for about 8yrs. Over the last 2yrs. they haven't stopped! I've tried just about everything. Iget some relief from narcotics,but they don't work fast enough. I have a "low grade" H.A. all the time, with vicious attacks (stabbing L-eye)occuring 2-6 times daily. I'm currently on Percoet(oxy-codone)1-2prn,OxyFast elixer(oxy-codone)1cc/20mgs prn,Inderal LA120mgs bid, Miranol Spray 1-each nostril repeat in 45min (1vial) prn 2vials per wk. Atavan 0.5mgs qid, Wellbutrin 100mgs tid, Dalmane 15mgs 1-2 qhs as needed. I've had 16 E.R. visits in the last 6 months. I usually am treated with 75mgs Demerol, 25mgs Phenergan IM(injection),100%oxygen. This usually knocks-out the H.A.(and me along with it). My Dr. has reffered me to the Pain & Rehabilitation Center of Chicago who,in turn have reffered me to the Michigan HeadAche Pain & Neurological Institue in Ann Arbor, Mi. Any info would be greatly appreciated.
TracyLee <www.marsdent@ameritech.net>
chi, il USA
Wednesday, June 09, 1999 at 14:16:49 (EDT)

Thank you for giving me a great place to get information. I don't know how many doctors I seen that I wish had the kind of info you have. Keep doing what you're doing!
John Boone <boone@tcac.net>
Amarillo, TX USA
Wednesday, June 09, 1999 at 11:36:15 (EDT)

I'm glad I found this website. I was diagnosed with migraine, but, no one I talked to with migraines has hot pokers stuck up their nose and in their eyes every time they have an attack. Mine started in 1985 shortly after a 19,000 volt electic shock. Could there be a connection?
Carol Schneider <cherokee@linkny.com>
Dundee, NY USA
Wednesday, June 09, 1999 at 10:04:31 (EDT)

Please e-mail me anything on treating cluster headaches that may contain homoiopathic treatments. thank you.
MILISSA MCCLANE <NIVEKYEHCIR@WEBTV.NET>
GRESHAM, OR USA
Wednesday, June 09, 1999 at 05:44:30 (EDT)

Very briefly, I have found that using ice in a plastic bag to chill the palms of my hands, and then applying my cold palms to my eyeballs and forehead will stop the pain within minutes. Also, the fact that it works (almost infallibly) eliminates the very real sense of panic I used to get when the symptoms start. Now I just start looking for ice and a plastic bag.
Peter Smith <EPSCO@AOL.COM>
USA
Wednesday, June 09, 1999 at 01:27:25 (EDT)

I have had mri's loads of meds ice packs oxygen and many tears. These are the worst. I would amputate rather than have these. My family is so understanding and I am fortunate that I only have these horrible clusters a few times a year. I think they may be seasonal. 2 weeks at a time and every hour for 34 minutes. The pain is so severe tht i spend time vomiting and then just saying prayers until it is gone. I am exhausted and totally at the mercy of these things. I feel so bad for you have these headaches so much more than I do. I know I should feel fortunate but for the times I have them I am so sick... I am trying everything any ideas??? Why in this day and age we can not do something about these.
patsy
USA
Tuesday, June 08, 1999 at 23:18:19 (EDT)

I have just found all of you. It does help to know we're not alone. It would probably be easier for me to list what I have NOT tried. I came across all of you when I started to research Neurontin (Gabapentin) that my M.D. just gave me. I wanted to know something about it before I put another drug in my system. Right now I am being treated for a back injury that happened in a car accident 1 1/2 years ago. I need surgery but can't get the insurance company to cover it. The old "pre-existing condition". Sound familiar? One question I do have that I cannot seem to find an answer for: anyone have any suggestions on what to do about severe stomach upset? I have used all of it - everything on the market and in all combinations. Got any suggestions? I was diagnosed years ago with a stomach ulcer, but that was suppose to have cleared up. With all the back pain, CH and related medications, I vomit quite a bit. Of course, when I do, there goes my medicine. Anyone who lives in the Pacific Northwest will also know the additional problem of getting a doctor to prescribe a controlled substance!! In Oregon and Washington the doctors are just paranoid about drugs. I have proof of my back injury from an MRI and Diskogram, yet they tell me I am a "drug-seeking" personality. Someone take away the back pain and headaches and they'll see how fast I flush the pills! If I could rid myself of both, I would never swallow a pill again as long as I live. Luckily, I have found a G.P. who will prescribe what I need since my neurologist is 700 miles away and I can't get to him very often. Any stomach answers would be greatly appreciated.
Jo Matthews <josie@toledotel.com>
Longview, WA USA
Tuesday, June 08, 1999 at 22:05:39 (EDT)

Greetings,Well you have another loyal viewer,I am afraid Thumper(Bob)suffers from the Evil Devil also.I Flowers(Gail) am starting a page on these Evil demons for him... Will be back often Thanks http://www.geocities.com/Yosemite/9714/
Gail&Bob akaFlowers&Thumper <bogaseme@ma.ultranet.com>
Ma USA
Tuesday, June 08, 1999 at 21:28:07 (EDT)

Thank you SO much for having a wonderful place where we can all be together to acquire information,but most of all to know we'll be understood...finally.
Ala Radwan <radwan@batelco.com.bh>
Manama, xx Bahrain
Tuesday, June 08, 1999 at 14:56:43 (EDT)

I started another episode last week. They have been recurring every two years for the last 12 years. Every other night between 3-5am it will happen. During previous episode I inhaled oxygen, and it worked most of the time. The greatest benefit was peace of mind in knowing I had a weapon. Good luck to all.
Larry
St. Louis, MO USA
Tuesday, June 08, 1999 at 13:00:52 (EDT)

Nice page, however, your medical info seems somewhat outdated. There is no mention at all of medications like Immigran or Maxalt. How come?? Compliments on your page, its a nice innitiative of which you can't be getting rich. All the best, William
William <lwf@xs4all.nl>
Amsterdam, Netherlands
Tuesday, June 08, 1999 at 08:01:10 (EDT)

Hi all from The Rainbow Nation. I have been a sufferrer from the age of 26 I often have remiision periods of up to two years and am currenly in a remission of about 18 months. Bruce.
Bruce Gillett <bruceg@absa.co.za>
Johannesburg, Gauteng South Africa
Tuesday, June 08, 1999 at 03:45:36 (EDT)

The most intence pain I have ever felt, nothing would get rid of it(except synthetic narcotics prescribed by phys.)until my doctor had me try "IMETREX". It works for me ,but only by using the self-injectors.Thank God for "IMETREX".
Scoot69 <bethh@msmisp.com>
Newark, OH USA
Tuesday, June 08, 1999 at 03:25:08 (EDT)

thank you for adding me to your list. this is the first sight that has come accross that realy caters to people who have their lives ruiened by this ilness. thanks.
DOUG LUTZ <PEGANONE@WEBTV.NET>
NEW ORLEANS, LA USA
Tuesday, June 08, 1999 at 02:22:33 (EDT)

Great site. After suffering periodically for 30 years, its helpful to see what others are doing, and the results and options available.
Dan McDaniel <damplc@aol.com>
Stockton, Ca USA
Monday, June 07, 1999 at 23:27:39 (EDT)

My wife suffers with clusters. I'm just out here because she asked me to take look at your site to get more info about what she going thru. It hard for me to understand what she is going thru but I willing to do what I can to help. Thanks DJ for providing this site.
Ted <krajet@juno.com>
Madison, WI USA
Monday, June 07, 1999 at 22:33:41 (EDT)

I have been getting clusters for 17yrs, and I am only 28yrs old.The older I get the worse they get, I cant immagine what they will be like 10-20yrs from now!
Jen Lowrey < JEN593@webtv.net>
Cochranville, Pa USA
Monday, June 07, 1999 at 21:37:49 (EDT)

GREAT WEBSITE FOR ALL THAT SUFFER FROM CLUSTERS.
PAUL A COOK <LOPICE@AOL.COM>
MURFREESBORO, TN USA
Monday, June 07, 1999 at 16:27:43 (EDT)

I am sorry for my "Austrian" English !!!(see next message)
dr.eichwalder andreas <dr.eichwalder@medicalnet.at>
horn, austria
Monday, June 07, 1999 at 16:25:39 (EDT)

Also doctors can suffer from cluster.Suffering since 7years,now 37 years old.In 1994 operation of an hypophysis adenoma 2 years later the next attack.And now i am aigain in the 4th week Hope it will stop soon.Bye.
dr.eichwalder andreas <dr.eichwalder@medicalnet.at>
horn, austria
Monday, June 07, 1999 at 16:17:45 (EDT)

Hi, I just discovered this sight by accident. I suffered terribly from cluster headaches in College and until about age 30. I went to the headache clinic at the Faulkner Hospital in Boston and got relief. At the first consultation they asked if I drank too much, slept on a weird (varying) schedule, had a bad relationship with my mother, and/or didn't exercise. They were right on every one. They recommended awaking every morning at the same time and starting an exercise regimen. I started running the next day and my headaches slowly ceased and finally stopped! I've not had one in 17 years, but I know they can return. I hope everyone finds some relief - it seems like the scientists are making some progress. Paul
Paul Roche <proche@induscorp.com>
Vienna, VA USA
Monday, June 07, 1999 at 12:07:09 (EDT)

suffering with cluster headackes for 8 years.i am 30yrsold
tasi
canton, mi USA
Monday, June 07, 1999 at 01:29:19 (EDT)

Fantastic that a site was created specifically for cluster suffers. i am looking forw3ard to accessing all the information that it offers.
PAUL A COOK <LOPICE@AOL.COM>
MURFREESBORO, TN USA
Sunday, June 06, 1999 at 13:54:38 (EDT)

hurting right now just got off the phone with new dr. it's hard to explain to them the differance between migraines & clusters . she told me to take advil. the pains starting to ease up going to try for some sleep see ya
rich vincz <VINCZ23>
EAST BRUNSWICK, NJ USA
Saturday, June 05, 1999 at 18:48:47 (EDT)

Hello, Finally I have founf a site that assures me that I am not alone, and that there are other people in the world that share the same problem that I do. Unfortunately I am pretty new at this, I have only had clusters for 4 years and every year they intensify to the greatest magnitude of pain every year. They are unbearable and I find myself at the emergency room or my DR.'s office at least three times a week. I only get them for about once a year lasting about 4-6 weeks. The bad thing is I usually get on the average of about 8-12 a day all lasting about a half an hour. I am now on Imitrex shots and pills, also taking tegrital(a seizure medication) and inderal ( a heart medication). My DR. unfortunately also tells me that we are on a trial and error basis, not having a cure and also not knowing exactly what cures clusters. My main problem is I hear all kinds of things about foods to stay away from and foods to eat, but I can't seem to find anything about that. Nor, can I find any other things foodwise, therapy wise, that can help curb the effects or even subside the pain for a little bit to help. So my question is to anyone that can offer any suggestions that can help me out on how to better deal with these instead of relying on all the meds that I am taking. Any comments or suggestions are helpful. There is no way to describe the pain that these headaches cause, but I am glad there are other people out there that understand what every other person that suffers from clusters is going through. Beacause a lot of people do not understand, nor are compassionate to the fact that this is actually a disease and/or a disorder of the brain. thanks DiamondDave_5@yahoo.com
Dave <DiamondDave_5@yahoo.com>
CA USA
Saturday, June 05, 1999 at 18:08:39 (EDT)

Hi, is anybody here?
Joy <mjwheels@airmail.net>
TX USA
Saturday, June 05, 1999 at 15:44:18 (EDT)

it is a long story but please check the website called truthinlabeling.org it has changed my life, and soon will change yours. i was told my headaches were msg related.so i stopped msg foods, and nothing changed. then discovered that foods labeled "no msg" indeed can have msg and are allowed to use a bogus name to spare the food industry from losing money. the list of hidden sources and studies linking brain lesions, depression, mood swings ect...are all there for you. the website nomsg is another page that is on to this coverup. you must read it!!!my headaches are gone! unless of course i give in to the foods i know i shouldn't. if i slip i take a psuedophed,1 mg.of chlor-trimeton and an advil. the combo definitely relieves the pain. good luck.
sue <swi@aol.com>
largo, fl USA
Friday, June 04, 1999 at 18:41:39 (EDT)

Hello, - I am a woman of 39 years of age. I have suffered from cluster headaches since I was about 16. During the period of pregnancy and giving birth to my two children (a period of three years) I did not have any attacks at all, but after this period of time I began suffering from the attacks daily. Today I am retired from my work (bookkeeper)unable to attend a normal job. For the last 6 months I have experienced an increase of attacks (for May 49 attacks)and it is only getting worse. At the moment the attacks are so strong that I would discibe them as suicidle. My husband helps me every time, mostly nights. I never sleeps though a whole night. My diagnose is cronic cluster headache(HORTON) and I am given Sumatriptane injections for treatment for the more severe attacks and oxygene for the lighter attachs. Both treatments help me when I am at home. Please, do not hesitate to write to me if any of you have information I could gaine knowledge from.
Maiken Hejnfelt <hejnfelt@usa.net>
Frederikssund, Denmark,Europe
Friday, June 04, 1999 at 18:28:15 (EDT)

Hey.. I was going through the CH info from the menu at left, and I just thought of something else... How many CH sufferers have a night light? Recently it was shown that night lights affect the growth of the eye in young children.. myopia.. all that. But it would be interesting to see if having your Circ. rythmn disrupted by a light source while you sleep affected CH?
Mike Johnson <mjohnson@davesworld.net>
Bloomington, IL USA
Friday, June 04, 1999 at 17:15:28 (EDT)

I have suffered from both migrane and CH for years, with a large spike after a car accident in 91, tapering off from 2-3 /day down to now infrequent. I figured out part of my headache problems were related to allergies, where a good does of benedryl when I started feeling "spaced" clipped the headaches off before they could start. What am I allergic to? Dunno. I have Grey eyes (The "shifting" eye color.), Bananna's do tend to trigger headaches for me... and ginger tea seems to take the edge off as well.. (not teabag ginger tea, but literally chopped ginger in boiling water.. pehaps the burning from the ginger oils just takes some of my attention away) Has anyone looked into seasonal affective disorders and CH? When do people tend to get them more? Do people in Alaska suffer the same CH rate as those in Florida? I would imagine that the Alaskan ones would be more cyclic while lower latitudes would be more evenly spaced through the year if light is an issue (assuming that eye color and light reception is an issue.) Another question. Is it necessarily eye color? are light-eyed peoples from outside of Europe as susceptible? (Asian?) Perhaps there is a "genetic trail" through Northern Europeans? If Northern European ancestry is the key, and not just eye color, then see if Northern Europeans IN THEIR HOME countries have the same problem. Perhaps there is a large dietary constituency in a given area (say Omega 3 oils or something... reindeer steaks, who knows) that prevent the Northern Europeans from experiencing the pain. It would be horrible is it all just something silly, like needing to wear sunglasses regularly, or providing a natural full spectrum light source in your office to offset the artificial....
Mike Johnson <mjohnson@davesworld.net>
Bloomington, IL USA
Friday, June 04, 1999 at 17:05:46 (EDT)

My son (age 28) has been given a priliminary diagnosis of cluster headaches. Thanks for the information so we know how to better support him.
Deanne Taylor <DeanneAT@aol.com>
UT USA
Friday, June 04, 1999 at 15:31:06 (EDT)

Had CH's since 18. 43 now. Nothing works. Stadol helps but hard to get.
Bruce Headley <bheadley@ngkmfg.com>
Williamstown, Wv USA
Friday, June 04, 1999 at 13:21:35 (EDT)

Since I was 28 yr. old I've had migraines and cluster headaches. There is a family history on both sides and meds have only sometimes. I take Depakote daily. I'm 44 now and am praying for menapause.
Deb Berglund <RTebe 4916>
Cedar Rapids, Iowa USA
Friday, June 04, 1999 at 12:39:22 (EDT)

Great site! Glad to know I'm not alone. I thought the headaches were allergy related because they only occur during the spring. I'm glad to finally have an answer. 50mg diphenhydramine (OTC sleeping pills) takes the pain away within 20 minutes or so. Be careful though.
John <jthorn@flash.net>
Pearland, TX USA
Friday, June 04, 1999 at 10:02:50 (EDT)

Steve V.R <tireguy@kdsi.net>
Pella, IA USA
Thursday, June 03, 1999 at 23:19:03 (EDT)

44 yo pharmacist w/ 20 y history of CH. Have used ergotamine (good for acute), desipramine (seemed to decrease frequency of attacks), oxygen (usually abortive), verapamil (good prophylaxis during bout), prednisone (immediate prevention--HA's returned after stopping), indomethacin (no help), methysergide (good prophylaxis during cluster episode). Have skipped 2 years over the 20 year period, once when I traveled for 14 months and once when I used desipramine. My headaches used to be very puntual and predictable. As I have gotten older they occur more randomly. The headaches cause be to become almost superstitous. I will suspect anything out of the ordinary, different foods, vitamin supplements, exercise, ex sleep, hot showers, stress, changes in shedule or routine. Have been unsuccessful in search for the ultimate preventative but I continue to search.
Ron Grosserode <Grosserode@cs.com>
El Paso, TX USA
Thursday, June 03, 1999 at 22:09:57 (EDT)

Greetings and very best wishes to you all!
Dave Miller <KarbonData@aol.com>
Poole, Dos U.K
Thursday, June 03, 1999 at 14:35:51 (EDT)

Wonderful site with lots of useful information. Sure could have used it 15 years ago!!
Burl Thornton <bht9@aol.com>
Plainfield, IL USA
Thursday, June 03, 1999 at 13:21:50 (EDT)

I'm really happy that I have found this site. I am hoping that I will receive a few replys to this so that I can talk with another individual that endures this sort of pain. I started having these headaches back in 1990'. I am a 27 year old Mother of two little boys. I have been married now for 6 years. I could be so-so much happier if I could find help with my headaches. I have been to many neurologists but, only one of them have given me a title for my headaches. I sometimes think my doctors do not even believe that I endure the pain that I do with them. I am treated as though I just want pain pills, but I am wanting to be treated and get rid of them! Please e-mail me and help all that you can. Any suggestions will be appreciated. Thank-you
April Houser-Mashburn <AngelAmI@ntown.com>
Maynardville, TN USA
Thursday, June 03, 1999 at 10:55:20 (EDT)

I've had clusters for 16yrs.since I was 21 years old. I started having them the same week my son was born. At that time I knew it was an impacted wisdom tooth which led to a trip to the O.S. for ext. When that didn't help I was convinced it had to be a brain tumor. After a few years of being misdiagnosed; finally my ENT told me cluster H/A's & I went to the Neurol- ogist. The rest is history!! After ct scans & about 4-5 MRI's (AAAGGHH!) EEG's, EKG's & you name all the meds. Which I'm sure most, if not all of you have tried. I then had open joint surgery on my TMJ ( jaw joints) a 6 hr. surgery & othroscopic surgery to remove the scar tissue on the joints. Guess what 2 weeks after that I started having clusters again! (Depression at it's worst!)I use to have them 8 wks. out of every 12 months. Then I lasted 18 mos., the next episode waited 24 mos. This last time I went almost 4 yrs. I started having them last Sat. night @ 4 A.M. w/ a house full of company. I started taking 60mg. of Prednisone & after 4 days I have to taper off & I know that means a tidalwave of clusters. Last night was the first night I didn't have any because of the steroids & tonight I'm so pumped from them I can't sleep! I see my Neurologist in the morning. His office said they couldn't even call in oxygen for me because I hadn't been there in 4yrs.!! I didn't mean to be soooo long winded. I found this site only yesterday & I think it WONDERFUL! Good luck to all of you & even though you wouldn't wish this on anyone, it is very comforting to know that there are real people who truley understand! Love & prayers to you all....... Kathy
Kathy Kestner <derek1@naxs.com>
Abingdon, VA USA
Thursday, June 03, 1999 at 01:42:20 (EDT)

don't know what kind mine are, in process of finding out, but what misery. I thought midrin would help, because everyone said it works for them. I've taken 3 of them starting yesterday, all at least 6 hrs apart, but I think it actually made it worse, is that possible. Neuro is next can't stand this anymore. good luck!
Tonya Gillis <mlgillis1@excelonline.com>
Clinton, MS USA
Wednesday, June 02, 1999 at 20:18:33 (EDT)

I just found your site tonight and am highly interested in this problem, as I have been a sufferer for 6-8 years. When I first had an episode several years ago, I thought it had something to do with allergies, as I suffer from allergic rhinitis. I appreciate your info. I am printing the lengthy article on latest info to digest. Thanks again.
Art Krueger <AFKRUEGER@prodigy.net>
Bahama, NC USA
Wednesday, June 02, 1999 at 19:59:12 (EDT)

Just signing the book. Have suffered for over 20 years but they may be going away. Hurrah.
Doug Pratt <drpratt@ix.netcom.com>
San Jose, CA USA
Wednesday, June 02, 1999 at 18:58:07 (EDT)

Has anyone heard of research being done with GABA (Gama aminobutyric acid)for clusters? GABA is manufactured in the hypothalmus and has been linked to anxiety and sleep disorders and production of growth hormone. I have endured relatively severe anxiety and depression at least as long as I've had my clusters.(about 15 years). I am convinced that much of this is due to the intense nature of our disease but wonder how much biological influence this neurotransmitter may have. The hypothalmus seems to be a leading candidate for our affliction. I feel for you all. I would not wish this on my worst enemy. Get the word out! More research needs to be done!!!!!!!!!!!!!!
Joe Stone <jstone@goedu.net>
Denver, Co USA
Wednesday, June 02, 1999 at 17:56:07 (EDT)

Hi, I am a pharmacy grad student doing a thesis on cluster headahes. I would like to use some of the information off of cluster headaches.com but need the reference information so that I can use the info in my paper. I think it is important for a pharmacist to realize the difference between this and a migraine headache and it is not something that we have covered extensively. Please help me.
heather (student) <bhbrock@worldnet.att.net>
bham, al USA
Wednesday, June 02, 1999 at 15:05:58 (EDT)

I have suffered with cluster headaches since 1973. Recently relocated from Colorado to Kentucky, I have noticed a drastic increase in headaches. I am appalled that the insurance companies will only pay for 9 Imitrex tablets in a 30 day period. Stadol Nasal spray works great, especillly if I wake up with a headache. Unfortunately the doctors treat you as though you are a drug seeker when you request it. I'm at work and barely able to stay awake to type this. I woke up with a cluster at 2AM with nothing to ease the pain but an ice pack. As long as God gives me the strength, I will fight for better coverage from the insurance companies. Thanks so much for allowing me to sound off a little. And to each of you that suffer from these unspeakable headaches....You are in the prayers of my wife and myself. Sam Goff Lexington, Ky.
Sam Goff <Sam.goff@telequest.com>
Lexington, Ky USA
Wednesday, June 02, 1999 at 13:37:50 (EDT)

I had a chronic case years ago (approx. 09 years of hell) God gave me about 5-6 years break, well it's over. They have been knocking on my door (head) for about a month now. They got in last night ( 5-45 minute bouts) Afraid to go to sleep. I'll talk later,I have a doctors appointment to see if anything new is out there .I have been on everything listed in this article so far,except (I read this on another site) Cocaine Hydrochloride,gotta find out,you know where I'm at. I can't and will not survive 09 years again.
Lenny McCullers <ljmccul@aol.com>
Phoenix, Az USA
Wednesday, June 02, 1999 at 12:23:12 (EDT)

I started to suffer from severe migraines, accompanied by vomiting, in my early twenties The precursor to the migraines was a feeling of being full for 2 to 3 days. The migraines would start around 4 am, and would be excruciating. After several years of suffering, with an increase in the frequency of the attacks, I managed to pin down the culprit - which was chocolate. However, it was obvious that this was not the only cause, as I found by forcing myself to be sick, to the point where a bright yellow bile was "ejected", then my migraine would almost instantly disappear. It was clear therefore that any drug that would prevent you from being sick was in fact exacerbating the problem. I tried several different herbal remedies, but have finally hit on one which breaks down Urea (which is what I conclude has been causing the problem), and so I now take a celery tablet every day, avoid chocolate, and I now have been free of migraines for over a year. The alcohol intolerance that I suffered prior to the onset of a migraine has now almost completely gone, and so I would suggest that other sufferers might try celery tablets, if they tend to get sick when a migraine starts. The important thing is that the tablets are taken on daily basis. My mother who also suffers from migraines, has found that although her migraines have not stopped, the tablets have significantly reduced her sickness, and reduced the length of the migraine. I hope that this might help even one person, as I have been lucky.
Phil
UK
Wednesday, June 02, 1999 at 07:19:21 (EDT)

Hi i have just found this site.fantastic. i have had clusters for 137 years or is it 15 anyway it feels like 137. i live in spain and no one even doctors have any idear what cluster headache are to the point when about six months ago at 4 am i had 4 doctors in the hospital telling me i was overreacting to a headache and telling me the pain can not be so bad maybe you have toothache ext. you can imagine. i think that one day we should all get together and walk to the white house (varapamil ) in hand to demand a solustion to this pain afterall i belive this is 1999 .we put men on the moon,change hearts,even change sex , so why have we not got a remedy for this ? i would like to thank Daran the founder of this site because its has helped me alot and i am sure meny other people if only to know you are not alone with this problem . i wish you all a pain free night take care big hug to all Tony Genovese barcelona spain goodlu
Tony Genovese <genovese@iponet.es>
Barcelona, spain
Wednesday, June 02, 1999 at 04:07:10 (EDT)

44 male 12 years seasonal (spring & fall )
Terry <gore2424@aol.com>
Davenport, IA USA
Tuesday, June 01, 1999 at 22:45:29 (EDT)

I had my first experience with Cluster Headache in 1966. I was 21 then. In the years following my first dreadful experience, I've had episodes every 10 to 15 months, each lasting about 5 or 6 weeks with 2 or 3 headaches per day. eight years ago the headaches stopped; that is until last Thursday at 1:21AM. They're back...I thought I'd 'outgrown them' but I guess I was wrong. I'm wandering through the various articles on the net in hopes of finding more about what's new in treatment, if anything. I'll stay in touch. Thanks for the opportunity to connect with others who suffer the same experiences. Phil
Phil <PEDEYOUNG@PRODIGY.NET>
ARROYO GRANDE, CA USA
Tuesday, June 01, 1999 at 11:03:40 (EDT)

I have found more info here than in twenty years of neurologists Cat scans MRIs God knows what. Even though I am in the midst of a particularly savage bout (& I know this is one place I can say that without seeming like a drama queen), I no longer feel like I should join the clientele of Dr, Kevorkian One doctor I visited said 'One day you will have your last bout of headaches'.I wasn't sure if he was reminding me of my mortality or saying that they would one day disappear. Has anyone's CH's vanished? Thanks for all the help, S
Sam <samsee@fox.net.au>
Melbourne, Vic Australia
Tuesday, June 01, 1999 at 10:21:02 (EDT)

I need to know if anyone, after the pain has gone, has a constantly weeping eye on the side of the head where pain occured.
Karen Harding <hardingj@iafrica.co.za>
CapeTown, South Africa
Tuesday, June 01, 1999 at 06:20:13 (EDT)

I have been a Cluster Headache sufferer since 1986 I was 18 years old and had no idea what had happened I thought that I was dying. I have them very often every 3 months to every 2 weeks. My doctor is very reluctant to prescibe pain medication. Is there an alternative and help? Ken Olsen
Ken Olsen <reality@inovion.com>
Layton, UT USA
Tuesday, June 01, 1999 at 00:17:09 (EDT)

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