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guest book

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

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

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


Great site. Thank you
Jim Ambrose <>
Somerset, Pa USA
Friday, April 30, 1999 at 22:10:53 (EDT)

I wanted to let everyone know what worked for "me" this episode. My headaches started this year the 1st or 2nd week of February. I had skipped my usual 18 months. I've gotten Clusters since I was 25. I'm now 41. I'm in a rare catagory of sufferers who "do" have a familial history. My Grandfather had them, my Dad, they skipped my two older brothers and yippee... I was blessed. After the days of inderal, sansert, bellergal, midron and every kind of ergot drug known to mankind a headache clinic opened in my area, now it's no longer in existance, and a neurologist specializing in headpain, Joseph Casaly, who patterned his practice after headache guru Joseph Saper in Michigan helped me and educated me a lot. Prednisone will stop mine completely but is dangerous to stay on for long periods of time so I'm told. I've never been on it longer than the prednisolone 6 day cycle. During that 6 days, I begin on Lithium and Verapamil as a preventative treatment. Some bouts / episodes it has not worked very well, some it has worked very very well. This episode I started taking 900 mg. Lithium a day and 480 mg. of Verapamil. Later I was able to cut to 600 mg. of Lithium and 320 mg. of Verapamil. To my surprise, it all worked this time very well. 1 or 2 headaches broke through a week. That is excellent for me!! Imitrex injectable kills mine, no matter what episode I've been in, in 10 minutes or less. I tried Maxalt disolvable this year and they "aren't" fast enough. Oxygen has always worked within 10 minutes with a nonrebreather mask at very high flow rate but I seem to have the headache come back as soon as I quit breathing it, so... I'm an Imitrex junkie. So in closing, my headaches have quit for this time and I wanted to share what worked for me. I understand very well it may not work for everyone, it hasn't always for me either. I didn't know about this site till I did a search this year for info. while having my headaches. I sympathize completely with you all but especially with those of you who are chronic sufferers. I've never been chronic only episodic. After 3 days of being off all the crummy side effects of Lithium and Verapamil, I'm beginning to feel normal again. Praise God!!! Speaking of which I'm praying now as I close that God, through Jesus Christ will touch, heal and give everyone strength to endure these things. In Christ, Jeff Creager
Jeff Creager <>
Englewood, Ohio USA
Friday, April 30, 1999 at 19:54:46 (EDT)

Back again. So are the CH after a good run of about 3 months absence. Still on the prednisolone. Every time I get down to 5mg the devil strikes again. Had some new thoughts on CH. This is to the lady sufferers out there. Have any of you linked the onset of CH,s with an injectable contaceptive. Mine started back in June 93 same time as I had a Depo Provera injection. I had never suffered with headaches before. Propably took about 4 paracetamol a year,that was mostly for hangovers. Now I rattle, forever popping pills of some sort.
Tanya Loveday <>
Norfolk, England
Friday, April 30, 1999 at 18:19:58 (EDT)

As a new entrant into the CH world, I am truely grateful for the CH site. I have been able to gain incredible information. I am in the middle of my first now 3 week long episode. I am working through traditional and untraditional medicine. With oxygen and imitrex available I can control the pain somewhat during episode and I am now on my third visit to an accupuncturist. Has anyone had experience with Sodium Angelicin tablets. My Chinese trained accupuncturist gave me some but I have found nothing in the literature or on this site. Any help would be appreciated. I too will keep up with the site and thanx again.
Martin Dukler <>
Milwaukee, WI USA
Friday, April 30, 1999 at 17:53:17 (EDT)

Well, in my previous entry, I was so convinced that my year and a half Cluster free time was because of the Amitryptiline. Mabey it was. But the damn clusters are back again, one every morning at around 8:00am for 45 to 60 minutes. Its like clockwork. Fiorcet seemed to help once to abort one when I took it early at the first sign, reducing the episode to about 10 minutes! But other times it did nothing. I wonder how many us also start these things around the late Spring time like I do.
Joe Cavazos <>
Houston, TX USA
Friday, April 30, 1999 at 17:22:55 (EDT)

This is a superb site,really is a help to read the stories etc...I could have wrote most of them myself!! I am currently starting my yearly ritual of clusters,2 months or so of hell to go!! I take Lithium 800mg daily.does anyone find a reaction/side effect of this is a terrible rash when in the sun? My doctor blames the Lithium for this and his advice is don't go in the sun!!(although we don't get much sun here in the UK it would be nice to enjoy a bit!) I would love to talk to anyone as i'm constantly trying all i can to beat this thing a be 'normal' again good luck everyone!Mark
Mark Winch <>
Canvey Island, UK
Friday, April 30, 1999 at 04:51:52 (EDT)

20 years of hell
Bill K <>
Superior, Wi. USA
Thursday, April 29, 1999 at 14:28:05 (EDT)

My son has been suffering from excruciating headaches since he was 3 years old. He is now 9. The pain is always in his forhead, and he screams in pain. I give him a motrin and an ice bag and I have to make the room dark for him. When he was younger, they were infrequent- 1 every 2 months. They are becoming much more frequent...3-4 a week. They usually always come in the afternoon or evening. Another thing we have noticed is that they come when he gets hot. It's almost like his body overheats. These happen yearround, but more in the summer time. They come on fast and sometimes if we catch them early they go away in 30-45 minutes. Other times they last 2-4 hours and he gets real naseated. Sometimes he falls in a real hard deep sleep after screaming for 20-30 minutes. They go away completely most of the time. You would never know anything was wrong in between headaches. Our physician in our hometown always treated him for sinus infection, which never really worked. We saw another physician in another town and he put him on Vancenase AQ for allergies. Last week I took my son to Denver,Co. to the National Jewish Hospital. The doctor there said he thinks my son might be suffering from Cluster Headaches, and we will be going back to Denver to the Children's Hospital to see a pediatric neurologist soon. Does anyone else out there have children who are suffering the same symptoms? Does anyone out there think these are Cluster Headaches? I would appreciate some insight to this. Thank you in advance for your comments.
M Essay <>
Thursday, April 29, 1999 at 11:40:14 (EDT)

I hope this site can help me. I've suffered from CH for 24 yrs. and I am still sufferering. Maybe someone out there knows of something new. Believe me, I've tried just about everything!
bonnie pearson <>
Thursday, April 29, 1999 at 10:40:39 (EDT)

This site is great! I have been looking for this information to better understand what I am going through.
Jonathan <>
Birmingham, AL USA
Thursday, April 29, 1999 at 10:22:04 (EDT)

Looks like a wonderful site. Thank you
Thursday, April 29, 1999 at 01:17:44 (EDT)

I want to alert anyone using SANSERT for clusters,of the dangers you may not be aware of. Please read all you can about it before you use it, and make sure your Dr. knows also. Prolonged use can cause tumors in your colon and intestines. I know first hand, I left part of each of mine at Northside Hospital last year.
Wednesday, April 28, 1999 at 19:52:17 (EDT)

Unbelieveable to be able to talk to people who know what this pain is all about. My bout with cluster headaches started in November 1990 which was cyclical for the first two years (usually for 3 months)and then became chronic until 1997. After every type of treatment described at this web site and some that were not, they mysteriously stopped. In november of 1998 they returned again, they started to subside again in March of 99 and right now I still have some small attacks almost every night when I fall asleep. Someday I pray they will be gone forever.
Frank De Marzo <>
Costa Mesa, Ca USA
Wednesday, April 28, 1999 at 13:19:04 (EDT)

i have just recently started having the headaches. I am a little reluctant to go to my doctor. I am with an hmo and the treatment is often minimal. often nothing at all is done during the first 4 or 5 appointments; it is like they want you to get annoyed and go away. This HMO does not like problems that require long or expensive is nice to know that there are others with the same problem that i can turn to dave,
dave <>
albuquerque, nm USA
Wednesday, April 28, 1999 at 13:10:57 (EDT)

nice to finally see a sight dedicated to "the cluster"
David Leonard <>
Glendale, CA USA
Wednesday, April 28, 1999 at 10:55:01 (EDT)

I've had these CH for about 10 years,I get them every year in the spring for three months, once a day I've tried lots of different drugs on the market but nothing seems to work. I just recently heard about a drug called LIDOCAINE a numbing drug, can be used as nose drops to abort a cluster. Makes sense! Why not we use Benzocaine to stop a toothache. Give me some feed back...
Tuesday, April 27, 1999 at 22:27:19 (EDT)

I am a woman and have had cluster headaches for 18 years. They get so bad I just want to die. I have them at night and the only pace to go for help is the hospital. They treat me like I am a on drugs and want a fix. I gave up any hope six years ago. For some reason I looked this up on the web. I thought I was alone.
Johnnie Elaine Holloman <>
Forest Park, Ga USA
Tuesday, April 27, 1999 at 19:08:40 (EDT)

I have been suffering from this for six years and have just recently (yesterday !) been diagnosed.Mine are always during the spring , last about a month , are predominantly at night (6pm-3am),last for 2-4hrs, and are painful as all hell . Im trying vitamin B-2 100mg twice a day and used a migranal nasal inhaler for the first time last night with no success . Next up will be a methylpred dosepak if I have an episode tonight and cant control it with Migranal. If any of this junk works , I'll post my good news here !
steve andrews <>
washington, mo USA
Tuesday, April 27, 1999 at 14:18:16 (EDT)

Guess I'm one of the "not-many" asians in this guest book. Each time the pain hits, I wish I'd rather be dead....
Ivy Cheong <>
Tuesday, April 27, 1999 at 11:15:39 (EDT)

My dear brother and sister cluster sufferers. Many of your stories brought me close to tears, particularly Linda of Windsor, MA, and Patty, of Montezuma, IA. I am 63 and have been suffering clusters since 1960. The term "cluster headache" hadn't been coined yet. Diagnosis was non-existent, though everyone knew about migraines (but didn't really understand them, either). Opthalmologists and neurologists tried their ministrations, to no avail, of course. By 1964 the severity had increased to the point of insane all-night pacing, wall pounding, head clutching, the urge to rip out my right eye and poke a knife into the socket to cut out whatever was causing the indescribable pain. Thank God for Dr. Stetkavitch, a Ukrainian immigrant (God bless you, doc, wherever you are!), who called them "histamine" headaches, and prescribed a regular injection of a drug called Hepamine, derived from equine histamine extract. It worked a little, but the real breakthrough for me was my first prescription for Cafergot. Hepamine left the market years ago, but Cafergot, thank God, is still available, and, in the 35 years I've been using it, has been the best ( but not perfect!) solution for me. Over the years I've attempted to relate the onset of a cluster to stress, heat/cold, diet (chocolate, nuts, red wine, all sources of histamine), coffee, alcohol. I've tried, unsuccessfully, Inderal, Sansert, lithium, and perhaps a few I've forgotten about. Genetics don't seem to offer an answer--I don't know of anyone ahead of me on the family tree with these symptoms. A month ago, after seven years of no clusters, convinced it was finally over, a new cluster began with just the tiniest bit of eyeball pain. I recognized it immediately. Satan was back! Over the years I've been hospitalized twice for CH, both times because I overdosed on Cafergot. A potent combination of caffeine and ergotomine, its use is limited to seven doses a week. While in the hospital, morphine/demarol treatment seemed to totally upset the cycle and it would end in a few days. For those with multiple daily attacks, Cafergot is simply not the answer. For me, one tablet (it is also available in suppository and inhalant form) will stop the attack cold in 10-30 minutes, depending, I suppose, upon the contents of my stomach. Mine are coming daily now, between midnight and 6 a.m. At the worst of it, I must pace, in a totally dark room, no night lights. I'm surprised, pleased in a way, yet very sad, that there are so many of us. I believe there is a large enough pool now to begin a study to discover what we have in common besides this unbearable, mysteriously cyclic, pain. Meanwhile, this web site is a dream come true to anyone who thinks he or she is alone in a world of indifferent friends, coworkers, family, and medical practioners. I have been blessed to have an understanding wife (40 years and counting) who has been willing to put up with this monster. She herself is a migraine sufferer, and knows the isolation associated with such pain. God bless the host of this site.
Dick <>
Atlantic Beach, FL USA
Monday, April 26, 1999 at 23:03:55 (EDT)

Bravo! This site is very "all in one" and very complete represents the information about the Cluster headaches.
Todor Finkov <>
Monday, April 26, 1999 at 15:49:21 (EDT)

I am not alone!! I am sure you know how helpfull it is when you know others out there are "with you". I am 33 know and have had Clusters since 4th grade. Every school nurse has known me very well...I was the kid who would walk in the clinic hoping there was an empty room/bed where I could lay down with the lights out and just press against the right back side of my head until the "demon" would go away. I was pretty much alone with this for most of my life. My wife is the only person that knows my pain...she has seen me in pain and has tried (in vain) to massage it away. Until today, I thought I was curred. But this is only headache number 3 since I started taking Amytriptilyne (spelling?) two years ago!! I used to get the clusters every day or so, epecially late Spring and early Summer. This stuff seems to work. Hope some of you try it and let me know if it does.
Joe Cavazos <>
Houston, TX USA
Monday, April 26, 1999 at 11:40:45 (EDT)

Hi. I was glad to find your site. I 've had migraines for about 15 years, now I think it has changed to clusters. Does anyone know of good doctors or clinics that can help me? I called Johns Hpokins today and they can see me in 2 weeks. I've been in pain now for 3 weeks already and I don't think I can wait that long. Thanks for all the great information here, I also have tried just about everything for migraine including accupuncture. This is much worse, I think because it just doesn't stop.
Jen <>
Belcamp, MMD USA
Monday, April 26, 1999 at 09:55:31 (EDT)

suffering for 11 years nows.. twice every year.. help
claudia ;. <>
fl USA
Sunday, April 25, 1999 at 22:12:06 (EDT)

My wife is glad I do not own a gun!
Jesse Heller <>
Lehigh Acres, Fl USA
Sunday, April 25, 1999 at 12:48:24 (EDT)

Hi I have had headachs since I was in 9TH grade we have tried all kinds of treatement includeing most pain meds,shots,diet,allergist,even alcahol right now we are looking for a good headach clinic in or around PA. if any one knows of any I would greately apriceate it. Thanks,
John Green <>
Sunday, April 25, 1999 at 12:16:12 (EDT)

Thanks for this site!!! I was spared CH for two years, but am in the third week of a bout. On Prednisone and just got some Imitrex Spray, but haven't used it yet. I usually get the one bad bout on entering REM sleep. Compression and ice until my head freezes have kept me from going mad, but that's about all. Hope the Imitrex helps. Any information on health care providers who are up on this in South Jersey or Philly will be greatly appreciated.
Ed B <>
Vineland, NJ USA
Sunday, April 25, 1999 at 09:20:52 (EDT)

Thanks to all that responded to my last message. This is truly a great site for all of us who share in this suffering. Yesterday I started on Prednisone 80mg and Verapomil 480mg daily. Although I hate taking so much medicine, I was much better today. Hopefully I can get off it quick, but it is much better than having the PAIN. If anyone is familiar with this treatment please let me know, and if you haven't tried it, ask your Dr. I hope it helps.
Jay <>
W.Palm Beach, Fl. USA
Sunday, April 25, 1999 at 00:01:09 (EDT)

I am a 37 year old female that has suffered from CH since the age of 16. It was only 4 years ago that I was actually diagonosed with CH. For the earlier years, I was told I had typical migraines. Thank God for Dr. Jay! When I described the "Attacks" I was having, he diagnosed my headaches as Cluster and perscribed Oxygen and Imitrex injextions. I used the Imitrex for the first bout of CH that lasted two weeks, (the norm for me). Until I had an attack that lasted five months. That was when he perscribed DHE45 injections, along with the oxygen. It took almost ywo weeks to get the routine down so I knew to take an injection at 10:00 pm, so I could sleep through the night. The injections lasted for 22 hours, and the attacks would start again. Once I could get into the routine of a regular sleeping pattern, and use the oxygen both at home and at work, the 5 month cycle finally ended. That was approximately 2 years ago. Fortunately, I haven't had an episode since then, but I always have my injections with me, and have oxygen both at home and at the office. The DHE45 injections are what finally regulatd the attacks, and put them at bay. Thanks so much for this website! No one I know had any idea what these headaches are like. It's nice to know there are others out there who know the excruciating pain that we suffer from CH.
Lee <>
Mexico, NY USA
Saturday, April 24, 1999 at 21:44:45 (EDT)

They've been going on 3 weeks now. Thought I was coming out of it, but no such luck. Last cluster 2 years ago lasted 4 weeks, the one before that 6 weeks, so hoped the clusters were getting shorter as I get older. Just like the others: usually at night and every 2-3 hours but only last a few minutes.
John Miller <>
Kerrville, TX USA
Saturday, April 24, 1999 at 17:43:21 (EDT)

I sick of them !!!! Help !!
L Roberts <>
Tooele, Utt USA
Saturday, April 24, 1999 at 09:36:42 (EDT)

I've been suffering with these DAMN cluster for 15 years know. And just starting another cycle. I've had no luck with any treatment so far, BUT I've finally got an appointment at the Michigan Head Pain Clinic in Ann Arbor MI Maybe they can help me?
Michael Mattson <>
Millington, MI USA
Saturday, April 24, 1999 at 00:07:02 (EDT)

Hi, I am 19 years old and I'm having CH for about 2 years. When I was twelve I had my first migraine and this lastet (?) for 3 years. Then for a period of year I didn't have a headache at all. Until I one time when I woke up at night and hoped I was dead. Thanks for making this site, because cluster is very unknown in Holland.
Rik de Bruin <>
De Lier, Netherlands
Friday, April 23, 1999 at 09:24:04 (EDT)

Thank you for this site, I have suffered from CH for 6 years now, I am a 36, Male, Computer (web) programmer in the Northern VA Area.
Stephen Michl <>
Lorton, VA USA
Friday, April 23, 1999 at 04:07:07 (EDT)

I'm an Internet Tech for an ISP. Have not had clusters very often, but when i do , i can't move. Anyone know if eyesrain contributes ? I know it makes regular headaches appear.
P Caswell <>
Fremont, IN USA
Thursday, April 22, 1999 at 18:23:42 (EDT)

i seriously thought i was all alone in my suffering. i know it sounds bad but, it is kind of a relief knowing I am not. well as it feels like a knife is stabbing into my left eye I will sign off.
Eric Wade Eastridge <>
burlington, wi USA
Thursday, April 22, 1999 at 14:24:05 (EDT)

Hi, I am 42 and have suffered from CH's since I was 16. I was introduced to Imitrex injections in 1995. This cycle, however, is "beating" the medication. Are there any effective medicatios beyond Imitrex?
Jay <>
W. Palm Beach, Fl. USA
Thursday, April 22, 1999 at 13:11:34 (EDT)

My husband has Cluster Headaches he is 56 years old.
Clarence Childress <>
Fair Oaks, Ca USA
Thursday, April 22, 1999 at 12:45:55 (EDT)

Hi,My husband has had CH for the last 23 yrs. He has just started his cycle..reading the letters in here..has been helpful.Its great to find some people who relly understand what excatly these headaches do. support for the sufferes and their great..ive watched what these headaches can do and i really feel for you all..we have a great nuero doc. who has worked with us. and isn't shy to try new meds..weve started to take DHE injections..has anyone tried this.. weve been through the imetrix but that created rebounds for him..took the amerge but its not quick enough..if anyones got be glad to here about it..Take care.
Deb <Dsweaney@dreamsoft.>
riverside, ca USA
Thursday, April 22, 1999 at 03:47:21 (EDT)

I'm a 10yr sufferer. I've posted messages before but my isp's have been changing. Now I have hotmail so the problem should be solved. I've been through it all!!!!! Ron
Ronald J. Marino <>
Clearwater, Fl USA
Thursday, April 22, 1999 at 00:37:15 (EDT)

I'm a 10yr sufferer. I've posted messages before but my isp's have been changing. Now I have hotmail so the problem should be solved. I've been through it all!!!!! Ron
Ronald J. Marino <>
Clearwater, Fl USA
Thursday, April 22, 1999 at 00:32:03 (EDT)

They came for the first time in November of '98. Besides the pain, which is total, getting to a doctor that correctly diagnosed me took 3 docs in Portland and then a flight across country. It has been the ride of my life and even the raising of my 3 children has never taken such a toll on me.
Jamy Stevan <>
Portland, or USA
Wednesday, April 21, 1999 at 14:02:26 (EDT)

I'm 30 years old and I suffered from CH for approx. 7 years. The pain is beyond belief. I just went to a new doctor yesterday. Will try new prescriptions that he recommends and let you know of the outcome. Glad to know that there is somewhere to turn and know there are people who understand.
Walt Hoult <>
Champaign, IL USA
Tuesday, April 20, 1999 at 12:55:40 (EDT)

Hi. I was just diagnosed with cluster headaches at age 60. I had migraines for years but have been pretty much under control for a long time. When this pain happened in the night I thought it was a tooth. Then I began having excruciating pain in my eye. Fortunately it never lasted long, but scared me to death. I ended up having my eyes and sinuses checked, a blood test. The eye Dr. thought it was atypical migraines but my own physician picked up on clusters. So far they've been manageable and of short duration. He has me on prednisone. I also had diarrhia, dizzyness and nausea (which was no fun in WalMart when it hit). Is this common? Thanks for any advice you can give, and my heart goes out to all of you. Ann
Ann Flight <>
St. Johnsbury, VT USA
Tuesday, April 20, 1999 at 07:11:40 (EDT)

This is my second entry and I would like to thank all those who responded too me. It's a great help to talk with people who suffer with the same headaches. I'm in my seventh week now and my CH that lasted 1 1/2 hours two times a day (shouldn't complain since some of you have them much longer) seem to be changing now to 30min. but now I have them 4 times a day. My question is this normal or does it mean that my cycle might be coming to a end? Also the pain is not as bad as they were when I only had them twice a day. I'm new to all this so any information would be great. thanks cindy
Cynthia Ray <>
Jackson, Ms USA
Tuesday, April 20, 1999 at 06:48:57 (EDT)

Hi, I'm a Cluster Headache sufferer and have had them for 8 years now,(will they ever go away?).. Ive just compleated a whole year without them and started to think maybe they might have gone forever,,but to no avail, they are back... Lets just hope some miracle cure wont be to far away...thanks
Matthew Oakford <>
hobart, tasmania australia
Monday, April 19, 1999 at 21:55:21 (EDT)

Hello friends. I am so thankful that I have found this website. I am 40 years old and have suffered with clusters since I was 16. Today (4/19/99) I had one of my "top five" all time cluster headaches. I normally take prednisone and sansert for the bouts. Last year I started taking imitrex as a supplement when I actually had an attack. Today, imitrex didn't phase the attacks. I hope that through this website, I will learn of something that will help eliminate these dreadful attacks. I look forward to meeting you and hopefully we all can help each other !!
Darrell G. Hawkins <>
Elkin, NC USA
Monday, April 19, 1999 at 18:37:54 (EDT)

First time on the site. Sixty one years old and have suffered from these headaches since my early twentys. My treatment so far is Indomethacin to prevent headaches and Stadol nasal spray to stop an oncoming attach. I'm looking for a method of treatment that would get me off of use of drugs etc.
Don Fredinburg <>
Colorado Springs, CO USA
Monday, April 19, 1999 at 16:52:30 (EDT)

Thank God someone came up with this. I am a 37 year old male that has suffered attacks every 2 years since I was 16. I didn't know what these things were until I 29 years old by reading an article while in the UK. My cycles last 6 to 10 weeks. The last three cycles I have used imatrex but for some reason I feel that the headaches are some how trying to fight the medication. The information on this site will be invaluable during my next cycle. Thanks
Steven E. JOnes <>
New York, NY USA
Monday, April 19, 1999 at 13:05:05 (EDT)

Started in high school, now 45. Had some good years and some not so good. Currently in month 6 with things gettng worse.
Lee Cowles <>
Benicia, CA USA
Monday, April 19, 1999 at 12:55:50 (EDT)

I started getting Cluster Headaches approx. 14 years ago. In retrospect, I can not believe all that I endured with them. NUMEROUS perscriptions (that did nothing), CT Scans, accupuncture. Such horrible memories! I got a headache while having a CT Scan performed, and could'nt move...Had accupuncture performed (which was a weird experience), walked out of the office and got a headache, and my favorite memory is of when my Cluster Headaches were thought to be a sinus problem,and a 12" probe was stuck into each nostril! Try Prednisone!!! It saved me!!
Harvey Rheiner <HAR1166>
Parkertown, NJ USA
Monday, April 19, 1999 at 01:24:36 (EDT)

Idon`t know where to begin,but here goes,from 1966 until 1993ISufered with clusters at the start they wasn`t as bad and could be controled with drugs (over the counter) but the got worse and nothing would stop the pain which was typical left side of the head and face all the way down into my neck over the years i went to every kind of doctor the only one who knew and understood what i had was a Neuroligst.he tried all the medicin that they knew had helped other people what helped me was predizone and verapomele along with oxygen I have been almost 6 years without one also i stoped smoking then I know how bad the pain can be but dont give up they will stop!
David Raines <>
Edisto beach, S.C. USA
Sunday, April 18, 1999 at 21:54:45 (EDT)

Hi I have just found this sight @ it has been a grear help Hope to get more out of all this info BYE FR. CLUSTER HEADACHE MAN
George Stallworth <>
Montreal, P.Q. Canada
Sunday, April 18, 1999 at 21:11:47 (EDT)

I am trying to find out what's wrong with my head. I've had CAT scans EEG's, MRI, etc to no avail. Current Doctor (Neurologist) says what I have is "Cluster Migraines". All I know is that it hurts and there seems to be no end. I've had trougle about 4 months now, and it doesn't go away. Can anybody help?
Bill Caffee <>
Louisville, Ky USA
Sunday, April 18, 1999 at 16:18:01 (EDT)

I just learned recently that I have cluster headaches. My doctor wants to try me on Celebrex first, any comments about this therapy?
Lisa <>
Spokane, WA USA
Sunday, April 18, 1999 at 14:44:02 (EDT)

started suffering in my early twenties, I am now fifty, in between the start of them to now, the attacks went away for about 10 years, but they came back a year ago, what a shock!
lansing, m.i USA
Sunday, April 18, 1999 at 08:15:58 (EDT)

Hi everyone, This is my third entry. I’m a 44 year old male. And I’ve been toying with an idea. I wonder if we can team up and start searching for doctors who also suffer cluster headaches? Then make a list and share it with our doctors so they can collaborate with the doctors who may understand CH a little bit better. Anyway you get the idea. What do you think?
Rick Byrd <>
Republic , MO USA
Sunday, April 18, 1999 at 01:04:45 (EDT)

Love this sight...lots of info and real people with the same problem.. My 16yr. old son has had CH for the last 5 years. Two cycles per year, 5 weeks each cycle. This year it came early, and is still here. Going through all of the meds that you all have been through trying to find the right one for him. No luck yet..we keep trying and he keeps trying to deal with this. I feel for all of you, as I watch my son and what he goes through. Luck to all of you and hopefully the right meds will come along for all of you.
mary <>
glendale, AZ USA
Saturday, April 17, 1999 at 23:58:05 (EDT)

Damn...its been 24 years! The first 11 years chronic and the last 13 episodic. That's a long time to have had these bad boys partying in my temple. I don't know if everyone realizes how truely cool it is to have a web site like this. When mine first started, the average layman couldn't find any worthwhile, zilch, nadda. Now there's a wealth of it at a click of the mouse! Great job DJ, keep it up.
Tim Banney <>
Buffalo, NY USA
Saturday, April 17, 1999 at 17:55:09 (EDT)

Wow! What a relief to know that my husband is not alone! Billey has been suffering from these horrible clusters for ten years! Numerous doctor visits, and no help. I had no idea there was so much information about CH's. It would have been so helpful if the doctors could have shared this with us ten years ago! We're right back to square one. Billey is on a waiting list to get into the Mayo Clinic in Scottsdale, where we are hopeful that they can recommend a pain management program, and recommend a headache specialist closer to home. We've exhausted ourselves in Nevada with numerous doctor visits. They have all said there is nothing they can do, you need to go out of state! Total frustration is where we are at. Having to witness my husband suffer with such excruciating pain is very difficult because I am helpless. Our daughter has a hard time understanding. Thanks for letting me share some of this. Perhaps we'll visit the message board again soon! Rachel Clingan
Billey Clingan, Sr. <>
Lovelock, NV USA
Saturday, April 17, 1999 at 16:38:12 (EDT)

i have cluster's
david s. medlock <>
kingston, ga USA
Saturday, April 17, 1999 at 14:21:08 (EDT)

Hello, I'm a 47 year old male that began having cluster headaches in 1975. They stopped in about 1982 and didn't return again until this year. This is a great website. Hang in there all of you. I was lucky enough to get a reprieve and am thankful for that. Now it's back to physician roulette.
Malcolm <>
Portland, OR USA
Saturday, April 17, 1999 at 13:07:50 (EDT)

Hello again.Its been 1yr.Well I am into a cycle again.Well should I say I was(Knock on wood).I made the long trip to the Diamond headache clinic in Chicago.I can tell ya all that the Cluster man is my Dr.,Dr. George Urban.AS the last time I was in the cycle Dr. Urban gave me a Dacrodon shot in the office,put me on sancert(3perday/5days).Sinnequan(1per day) and Calan(1per day) So far guys I am 6 days cluster-free.This time I got to them 3 days into the cycle.In closing Dr. Urban can really get rid of these into their cycles.I am a sufferer for about 15 years and my last two cycles Dr. Urban has really knocked these damb things in the ass.My advice to everyone out there is see Dr.Urban and you'll be satisfied.My only thing that I have a problem with is my employers,friends and family when I get these because all you know ,nobody understands these headaches and I don't think they ever will.If anyone wants any info about The Diamond Headache Clinic and I'll try my best to helpya out.In closing hang in there guys and gals your not alone like we all thought we were.
Robert Downs <>
Paris, IL USA
Saturday, April 17, 1999 at 00:32:18 (EDT)

Hello everyone, I am a 47 year old male who has suffered from cluster headaches for the past 17 years. The attacks generally occur every 12 to 18 months, and I have been free from the pain of these headaches for the last 15 months. In anticipation of the likelyhood they will recur in the next few months, I went searching for information and came across this site. I would be happy to share any information I have regarding the frequency, duration and medications I have taken in the past, and what has worked for me. Please feel free to send me some e-mail.
Neil Lillico <lillico@home.come>
Ottawa, ON Canada
Friday, April 16, 1999 at 15:43:04 (EDT)

My husband has Chronic Cluster Mig. He's on verapamil and is starting to have them again. He scares me when he has them because he gets really weak afterwards and his arms feel strange. He also uses Imitrex to get through them. Looking for anyone maybe experimenting on them to maybe find out some things we may not be doing and things I can look for when he has them.
tim fisher <>
Charlottesville, VA USA
Thursday, April 15, 1999 at 16:29:14 (EDT)

My husband Tim has Chronic Cluster Mig. They scare us all the time. I worry when he has them that something else really serious is going to happen and I (his wife) won't know what to do. He's on verapamil and it's worked for awhile but now he's started having them again.
Tim Fisher <>
Charlottesville, VA USA
Thursday, April 15, 1999 at 16:24:20 (EDT)

I am totally frustrated with these cluster headaches. At 43 years old (female) I first got them five years ago and they continue to become worse as days goes by. I have gone to five different specialist and none have been able to help me. The first four doctors thought it was stress. The fifth felt it was clusters and I have been seeing this doctor now for four years and have yet to see any progress in his treatment. Sincerely, Joni
Joan Smith <Joni>
Clayton, NC USA
Thursday, April 15, 1999 at 14:00:17 (EDT)

Salut à tous et bonjour à tous les francophones orphelins d'un tel site. Je viens de prendre la décision de faire mon possible pour rassembler le plus vite possible quelques pages Web pour monter un site à la "french". Je suis moi-même victime de CH depuis un an... cela bouleverse toute une vie... même plusieurs... puisque mes proches en souffrent presque autant que moi. N'hésitez pas à m'écrire : vous n'êtes pas seul et moi non plus. NOUS VAINCRONS
Laurent BODY <>
Bruxelles, Belgique / Belgium
Thursday, April 15, 1999 at 12:37:22 (EDT)

I'm a 41 year old female who also suffers from CH. I have been getting them each year for the past 22 years. I had given up on finding medical help for these terrible headaches, but after reading all the responses here, I think I'll check out some of the new medications. I found that ice packs "helped" but did not shorten the duration or get rid of the headache. My headaches last anywhere from 30 minutes to 12 hours, at which time I feel like dying. Like the rest of you, I get several per day at the peak of the clusters. It's a relief to find other women who also suffer as I was beginning to think that I was the only female!
Prince George, BC Canada
Thursday, April 15, 1999 at 12:25:18 (EDT)

Hi, I am a female with cluster headaches! Are there any others out there?
Wednesday, April 14, 1999 at 20:34:55 (EDT)

I am a 31yo female just passed by my second attack, I feel mild compared to some other entries I have read. Still trying to find a doctor to help. I suffered migraines my whole life, until they changed into clusters (I still get the migraines as well). Ironically, my sister started gtting clusters the same year I did, but in another part of the country. Fortunately, I have found some meds to calm the pain, verapamil stops the clusters, and found meditation works. My sister was diagnosed with MS. I hope the same fate does not await me. Thanks for this site... it is nice to know there ARE people who understand and can offer advice. god bless you all!
Jeanine <>
San Francisco, CA USA
Wednesday, April 14, 1999 at 19:46:31 (EDT)

I just recently figured out what I have, a friend read about it in readers digest. I thought that I was suffering from sinus headaches. I have had it, this time, for about 3 weeks now. The doctor prescribed, yesterday, APO Naproxen, an antibiotic. I usually don't get more than one attack a day, except for today I have had 2. I am wondering if it's the medication that is making it worse. I will definately take the time to read all of this site, when my head stops pounding for a bit. Does anyone know of any quick fix to releive the presure, evenly slightly. I would greatly appreciate it.
Peter <>
Vancouver, BC CANADA
Wednesday, April 14, 1999 at 17:54:38 (EDT)

What an amazing site. I am 37 and just got my first "stab in the eye" about 3 weeks ago. The attacks came every night between the hours of 2 and 4 a.m. I didn't go to the doctor because the pain never occured between the doctors 8-5 schedule. Finally (fortunately??) I had one that lingered through mid-morning so on my way to work I stopped off at Urgent Care. They shipped me off to the emergency room and by the grace of God I was met by a doctor who did not believe he was Dr. Ultimate Knowledge. He called a neurologist immediately who had them perform two CT's, then asked me what I thought were some strange questions (like If I felt like walking around during the pain???) When the Dr. came back with "we believe you have Cluster Headaches" I was a bit disappointed. The Dr. had been so good up to the point of a headache diagnosis. (My family has a history of life long, non-life interfering headaches and I KNEW this was not a headache). He then told me the neurologist had requested I come see him - and gave me an appointment for three days later. I have never had "service" like this so I figured these guys must know something I don't. I then went to work, hopped on the web, typed in Cluster Headache and ..... you folks came up. I had no idea this was a real "disease". What a resource. Though I must admit that some of your stories are quite scary (I've only been at this for 3 weeks and my pain is no where near what I read some of you have). Don't know what to expect in coming days/weeks/months, but it's nice to know there are others out there who understand. Enjoy ...BMe...
Brian Muszynski <>
Tucson, AZ USA
Wednesday, April 14, 1999 at 02:42:41 (EDT)

I have suffered for about two years, and unfortunately I am also a recovering alcoholic whose only means of relef in the past has been Vicoden ES or Percocet. About a yr ago, my Dr. prescribed Imitrex and instantly I no longer feared my clusters. Unfortunately now my Health care provider Pacificare Rocky Mtn no longer covers Imitrex, but only covers narcotic's for relief of these headaches. I am not sure I want to chance getting hooked on Vicoden. I guess I am damned if I do, damned if I don't. Good Luck to those of you who suffer. Try Imitrex if you can, it works wonders.
Galen Erickson <>
Aurora, CO USA
Wednesday, April 14, 1999 at 01:52:24 (EDT)

Hello and thanks to all that make this website possible. My well wishes to all us poor folks that have clusters as a part of our lives. I am 45 and have had them for 24 years. Last year was wonderful because I tried Prednisone for the first time. It worked like a champ. Only had 1 headache after taking the pills. This year is not so lucky although I am having only about a third as many. The bad part is that this year my cycle is running longer than it ever has before. This year I have tried Lidocaine nose drops with no success and just got a perscription for Verapamil. I'm a little worried about taking those. I hate to take pills but the headaches and the disruption of normal life is worse. Does anybody out there have anything they can share with me with regard to VERAPAMIL? The next thing on my list of things to try is the oxygen. Wish me luck and good luck to you all. Here's to the pain ree part of life. ED
Ed Feifert <SMT805@AOL.COM>
Danville, CA USA
Tuesday, April 13, 1999 at 22:52:09 (EDT)

Hi! I have just finished reading all the previous entries, and find myself in tears. I do not know if they are tears of pain, empathy, or fear for I can relate to it all. I am soon going to be 33 and have suffered with these monsters for the past 15 years. I have never gone for more than 18 months without a cycle and am starting one now. I have taken everything, you name it, sansert, imitrex, prdnisone, valium, the works! Like alot of you I was misdiagnosed and had to go through the first couple clusters without anyone having a clue what was wrong with me. Prednisone is the one thing that I have found that works for me. Instead of getting 4-6 headaches a day I am able to decrese it to 2-3 per week, with the cycle lasting about 2 months. I haven's called the Dr. yet for the script of prednisone cause I am still telling myself this is just a sinus infection( if only I could be so lucky!). I wouldn't wish this on anyone, but it is comforting to know that I am not alone and there are others who REALLY know what it is I deal with. My husband and 6 year old son could not be more supportive, but still have no clue what it is that "Mommy" goes through nightly for 8 weeks every year and a half. Thanks for being there and letting me say my peace. I will be praying for each one of you as enter this next cluster knowing there is now a place I can go and feel like someone KNOWS! Time to go and put the ice pack in the freezer! Take Care All!
Pam <>
Lancaster, PA USA
Tuesday, April 13, 1999 at 19:03:44 (EDT)

My mother has been a victim of Cluster Headaches since she was 14 yrs. old. She is a very strong person, but watching her deal with these, I have noticed that it takes a lot out of her. She hasn't given up yet, but she comes close, and as these headzches persist she gets closer to giving up. Every night she is up with two headaches(sometimes three). Then she has to wake up and work 12 hrs. every day. She has tried Imitrex, I am trying to talk her into accupuncture, but she's not sure. She has smoked since she was 17, and drinks a least 4 cups of coffee a day. I know these are major factors, I don't know if she disagrees with me or if she is just unwilling to try or give up these things. I don't want to lose my mother, but if nothing breaks through I am afraid that I will
Patricia Valdez
East Carbon, UT USA
Tuesday, April 13, 1999 at 14:21:08 (EDT)

I'm not sure this is the kind of headache I have but reading this information i'm being to think so. I used to have migranes when I was 16 they started and after long visits to the Nero. Dr. and alot of test he thought that was what I had. He put me on Inderal and that seemed to help, when I was around 27 they just stopped coming. thank GOD. But now I'm 36 and I get these headaches every day, now for three weeks sometimes they last 1/2 to 1 1/2 hours nothing I do helps but get in the dark and when it goes away it is all of the sudden just gone...but look out because it might very well come back of no reason. My pain is like a ice-pick in my temple around and in my left eye ( never the right ) I also have numbness on the left side of my face around my jaw with pain and I know this sounds funny but my teeth also hurt. I haven't seen a Dr. yet could somebody please tell me does this sound like cluster headahes and is there any hope or real treatment that works. thanks Cynthia Ray
Cynthia Ray <>
Jackson, Ms. USA
Tuesday, April 13, 1999 at 10:02:09 (EDT)

Hi Just coming outa a 7-8 week bout with this beast.... still under it's shadow but intensity and frequency are dropping off. Gad! What a time! Went thru a month of what I now know was CH 17 years ago, didn't know then what it was and just gutted thru it. Am now 49. Started up this time after the flu... first couple of weeks I just waited for 'em to get over with. They weren't getting over with and so my first visit to a clinic in nearly a decade.... the doc and I thought sinus but after 2 weeks antibiotics no change.... By then I'd read a little about headaches and had a hint my pattern better fit something called cluster headaches but all he'd talk about was migraine and offered some samples of Imitrex. They work 80 % of the time in about 30 minutes. I hate eating drugs but thank God for something to back these claws off! Before then it was either the bathroom (dark!) or the evening backyard walking a circle into the grass for 1 to 2 hours 2 to 4 time a day/night. During those times in the dark I came to understand that sometimes I could abort the beast with deep breathing... the next breath being about all I could count on getting to. Three to five minutes of this sometimes released me... incredible, the relief and the way it would be there in a matter of only a few heartbeats! Makes me interested in what I've read here about O2. Triggers for me seem to include food additives (esp nitrites and msg) and light. Driving can be a real drag.... 50 miles to go and I think I can make it to the next corner, I'll decide then if I can go on or not.... or, night driving and all of a sudden the oncoming headlights are needling through my eye and exploding from teeth to scalp. Reading, TV and the computer monitor will start the ice pick.... pisses me off! I just in Jan went out and got a 17" monitor and find putting myself in front of it can be real dicey... refresh rate up so no flicker and brightness and contrast down to ambient room level and still dicey. I'll have to be asking as to whether this is common for CH. LCD or TFT laptop monitors any better? Anyway, glad to find this site and crew! As I've learned in with other parts of my life... being alone with my demons lets fear step in in a big way... Once I can start talking with others who know what's up fear takes a back seat and I have chance to begin learning how to deal with the issues placed in my lap... if only by (re)learning the lesson of acceptance... but not, by God, without first exploring every other nuance of the serenity prayer! This post has become bigger than I intended as an intro... thanks for letting me yap! Email welcome... I'll be reading the postings and archives here and reaching out to offer my experience, strength and hope as I can. See ya on the message board! Praying for a pain free world for all !!!
Mitch Freeman <>
Chewelah, WA USA
Tuesday, April 13, 1999 at 01:21:36 (EDT)

I had my first CH in 1981, when I was 25 years old and a second lieutenant at Travis Air Force Base, CA. It took an Air Force allergist to disgnose my CHs 8 years later. Typically, my cycle hits every 2 or 3 years and lasts about 3 months, with anywhere from 5-8 daily eipsodes at the peak. As a career military officer I simply can't afford to stay home from work when I'm in the middle of these cycles, but they sure kick my butt during each 45-minute attack. My fellow officers think I'm nuts as they watch my right eye turn bloodshot, begin to water, and see my face pale. I usually try to work my way through it by taking a short walking-it-off break. As you can imagine, the most difficult task is finding a place where I won't be too conspicuous walking around with my head in my hands, softly moaning, and inhaling then exhaling deeply. There are so many of us, it's almost frightening! God bless you all and hang in there.
Larry Stephens <>
Montgomery, AL USA
Monday, April 12, 1999 at 21:10:51 (EDT)

I am certain that we hold a little different view on many things in life due to enduring this dreaded pain whenever it decides to raise it's ugly head. I suppose that makes us special. (!?!)
Kate Garnaat <>
Severna Park, MD USA
Monday, April 12, 1999 at 20:59:54 (EDT)

I have been suffering from cluster headaches for about 23 years. At first, I didn't know what this sharp pain in my right eye was and Dr.'s didn't have a clue back in the late 70's how to treat clusters (I was given vicadin)which was not very effective. I am in the middle of a cluster episode now which I get every 2 to 3 years and last about 4 to 9 weeks. I am taking Imitrix for relief and they are helping me greatly. God bless each and every one of you out there.
Bill Singer <>
Milpitas, Ca USA
Monday, April 12, 1999 at 00:31:37 (EDT)

Hi; I'm a 44 year old male. Thank you to whoever e-mailed me to suggest Imitrex. The Neurologist had given me some samples already. But it didn't help. He told me not to fill the scrip if they weren't helpful. I took it as directed. The headaches got worse as if I didn't take anything. I also had a general bad/tired lousy feeling about myself. While at work that can be very counterproductive So far I haven't responded to Amerge or Imitrex. They should have worked on cluster headaches. He also gave me Altram. And said use it sparingly. They are not effective one at a time. I can take one then one every hour until the headaches are under control. That equals three hours of pain. I take a total of three pills once a day to control the headaches. But at least I could think clearly. I don't think he meant for me to take that much. I can not think when I am in this kind of pain. And I have to think to work. I don't know what to tell the doctor. I just want OUT of this pain. One way or another. I think rebound (headaches) is a word used when they don't know what's wrong. I don't seem to fit into any one category. Does anyone know what to tell or ask a doctor? For anyone’s information. The shower massage is very helpful on the back of my neck for a short time. Does anyone have a home remedy they are willing to share?
Rick Byrd <>
Republic, Mo USA
Sunday, April 11, 1999 at 03:46:17 (EDT)

I have had a series of attacks each year for the past 15 years since I was 17 yrs old. A complete nightmare whene they come around as they destroy your life for a month or so. I am in the middle of atacks that have lasted 5 weeks so far. Just bought an eye pack that is like a gel and you either heat it up or cool it in the fridge and place it over your eyes.Cooling it and placing it over the eye where I get the pain seems to be preventing the frequency of attacks so I will keep trying as nothing else seems to work. Anything is worth a go.
Will Bright <>
Bangkok, Thailand
Sunday, April 11, 1999 at 03:06:07 (EDT)

I have suffered from cluster headaches, daily, for 5 years now. I diagnosed them myself as doctors continually told me that it was all in my head. I had to agree, it was all in my head. In order to get medications to help me, I am still trying to see which one is the best, I had to be assertive and tell the doctor what I had. Cluster headaches had never occurred to him. Dealing with cluster headaches has been the most difficult thing I have every had to deal with.
Sandie Larsen <>
Sandy, UT USA
Sunday, April 11, 1999 at 00:03:20 (EDT)

I was recently diagnosed with cluster headaches, at age 49. I'm trying to calm them down with diet. If anyone has tried different food restrictions, please let me know. I have eliminated caffiene, chocolate (not easy), and a few other things. And, Jeff is right, these headaches suck!
Jan Merideth <>
Los Angeles, CA USA
Saturday, April 10, 1999 at 23:58:25 (EDT)

these headaches suck
jeff besase <>
toledo, oh USA
Saturday, April 10, 1999 at 11:50:47 (EDT)

The pain is such a rush !!
James Stoddard <>
Friday, April 09, 1999 at 17:28:37 (EDT)

I really enjoyed this site because it showed me alot of things that noone would tell me or didn`t have the time to tell me.I am 27 and have been suffering from cluster migraines for 5 years , since i was knocked down by H2S . The doctors said that they could not say for sure if the gasing caused my migraine but they all agree that it was at least a trigger. I have tried every drug on the market and nothing has worked . Now i am taking lithium 3 times aday and also zomig and that works about 75% of the time .the really bad ones i have to take percocet. Anyway I have to go but i would love to hear from some one who knows what I am going through.
larry price <>
red deer, ab canada
Friday, April 09, 1999 at 16:40:23 (EDT)

Hello to all I know now what I have going through for the last 5 years! In my case it seems to only happen in spring or summer for about a month. I will call my doctor today, for in the past he was clueless to my problem i.e. take two asprin and go to bed. Thanks
Tom Norling <>
Homewood, Il USA
Friday, April 09, 1999 at 07:56:01 (EDT)

I am in the middle of a cluster right now and am so glad to have found this site. My last episode was a year ago and were mis-diagnosed as migraines. I'm now on zolmitriptan which does work about 70 per cent of the time. I am keen to try 100 % o2 anyone got any experience of that please e-mail me.Bless you all.
Mary <>
Guildford, UK
Friday, April 09, 1999 at 07:52:53 (EDT)

Like so many of you, I am greatly relieved to find this site. I am one of the "1 in 6" females that suffer from this. We never knew what it was, but I know believe that my father suffered from CH too. He would get up in the middle of the night and go outside to the backyard and walk around. The times that I awoke and found him out there, he would just tell me he had a "bitch of a headache". I have had headaches all my life, but didn't know what pain was until I got a Cluster Headache. I have suffered from CH since about 1976. I only had a couple of headaches at that time, and thought the usual--that it was sinus, or stress. I didn't have any more until I was pregnant, and my doctor thought I was just a "wuss". She didn't say so, but I could tell she was very frustrated with me. I think she finally realized I wasn't just being wimpy when I called her one night crying because of the pain. Of course, I couldn't take anything for the pain because I was pregnant, and the best she could give me was Tylenol 3. Thankfully that episode didn't last too long, and I didn't have them again for about 5 years. I had almost forgotten about them and WHAM! Here they came again. I still didn't know what the heck was going on, and like so many of you, I thought I probably had a brain tumor. Then, one day I was reading one of those "Ask Dr.___" articles in the newspaper and someone was describing exactly what I had! I decided that was probably what I was having, and the next time I had an episode, I told my dr. about it. We had moved to a new town and I had only seen this guy a couple of times. Luckily, he had read about CH and believed I had this. He gave me Fiorinal and that would get me through the episodes, but not without lots of tears and scary nights. I remember well the time that my husband found me in the back yard banging my head against the brick on the house. He does too! I think it may have scared him more than me. I was again pain free for about 3 years, and the last episode I had was in 1992--just before Christmas. Each time I have had the attacks it seems that we have either just moved to a new town or something major is going on in our lives. The last attack I had was just after we had opened our own business, and let me tell you that can be very stressful. I am wondering if stress doesn't play some part in all of this. I thank God that I haven't had a headache in 6 years, and was hoping I had beat this thing, but after reading all of your letters I see that I have probably just had a reprieve. All of you out there that know what this is like will believe me when I say that I have never experienced pain like this, actually pain is an understatement. It is hell. Thank you for this site--just knowing that others out there know what it is like makes it better. I will be sure to keep coming to this site for the latest information on this monster.
Jerilea Smith <>
Plano, TX USA
Friday, April 09, 1999 at 01:52:15 (EDT)

Hi ya'll. Sorry to move the guestbook page on you, but there were so many double and triple posts, I thought I would give this a try. Hopefully it will cut down on the extra time that the additional posts takes to load. I guess we'll see what happens. Don't forget to update your bookmarks! :-)
DJ <>
Wichita, KS USA
Thursday, April 08, 1999 at 23:42:38 (EDT)

After suffering for years with chronic nasal congestion - it is amazing that is was cluster headaches. I have learned to deal with the pain....after two surgeries on my nose - I am shocked that my doctors never thought about this before!
Steve Cote <>
Atlanta, GA USA
Thursday, April 08, 1999 at 22:24:45 (EDT)

I did not want these to be cluster headaches - but they are back. I went 5 years without one and hoped that it was just something else. These are really horrible and painful.
Brian Dollar <>
Columbia, MO USA
Thursday, April 08, 1999 at 20:59:12 (EDT)

After three years of remission, I thought the torture was over since popular wisdom would have it that once you hit 50 + years of age the clusters will disappear. Of course, popular wisdom not too many years ago was that we were simply stressed out, whiners, malingerers, and/or neurotics. Here's what works for me. First, thank God for Imitrex. The injections abort my headache in about 7 to 10 minutes versus the 45 minutes to one hour if I don't treat them at all. As I am sure you folks all know, after just one hour with these, you're wiped out physically and psychologically, and realize that maybe in just a few short hours, you're going to be doing it all over again. Some years ago, a bright young interist put me on Surmontil, one of the early anti-depressant tricyclites, and my clusters disappeared in about a month. The new SSRI's work much the same way--Prozac, Zoloft, etc. in that they interact with the chemical serotonin, a suspected culprit in the cluster attack. I also find it helpful to have something like Vistiral prescribed to offset the upset stomach caused by the Imitrex. My treatment plan calls for 50mg/day of Zoloft for one week, then 100mg/day from then on--one in the morning and one in the evening. I continue on the Zoloft for about 30 days after the last noted cluster, and slowly reduce the dosage back to zero. God bless all of you in your fight. I'd give almost anything not to have these headaches and to have to watch loved ones look on helplessly as I battle the pain. P.S. Our local HMO provider as of March 1999 has declared that Imitrex be limited to two boxes (four injections) every thirty days. That's a two-day supply for me. My neurologist got me a waiver. Seems the suits that run our health-care systems these days haven't heard of clusters. At least with my HMO, they know now!
Norm Gehrlein <>
Woodbridge, CT USA
Thursday, April 08, 1999 at 12:30:39 (EDT)

i begin getting my chronic clusters in june of 96 i am now 27 soon to be 28 i have tried and done it all nothing at all has worked as far as preventing the headaches from happening.i have had all the drugs that people speak of on this addition i have had three root canals one tooth removal all on upper right side of jaw i swore that was where the pain was coming from not so.went to a head and neck specialist diagnosed me with tmj of the jaw.i had to buy a bite splint WORTHLESS.then i got sent to a chiropractor seem to work for short time but came right back .then i got sent to a specialist near chicago he told me i had chronic cluster headaches and nothing i had done for them previously would he got me to try imitrex stat dose injections a miracle they worked.the money soon ran eighty dollars for two injections and usually at least three attacks per day well you get it i am sure by the way i have not and could not work since i started getting the headaches in 96.i finally got social security in 98 its not even close to what i or my parents spend monthly on imitrex i had my mother write a heartfelt letter to glaxxo wellcome on my behalf concerning the healpfullness and the financial burdon there drug had on me.glaxxo enrolled me in there patient assistance program.i now get each month 30 stat dose injections and 27 50mg imitrex tablets i still have to purchace alot my self but thank god for glaxxo.they give me over 21.000 dollars worth of medicine a year for free. email for info .by the way i still want to know about any known surgical tactics known anywhere to try to cure these damn headaches.response/chat/welcome/ sincearly c.l.c
curtis charlson <>
chesterton, IN USA
Thursday, April 08, 1999 at 01:06:24 (EDT)

I am 25 years old, have been suffering from cluster headaches since I was 17 but always thought they were migraines. I just found out this weekend that it is pretty different...worse in fact, only they don't last as long. Also known as suicide headaches because they hurt so bad you want to kill yorself. Get them just about the same time every day, always happens right at the beginning of summer. If I samck down a pair of advil just before it hits I can function but drugless I am useless. My right eye closes up and tears. This was especially embarassing during a sad scene when you're at the movies because then people think you are crying, but it's really this overpowering pain like a nail being driven into your skull. The only thing that seems to have helped long term is going to a chiropractor. After having cluster headaches every day for a year straight ( at noon, like clockwork ) I saw a great chiropractor in NY and within 5 visits I did not get them again for a FULL YEAR. I get them now every year, but sure beats every day. I am currently suffering from them now, being that South Florida's summer has really begun with high 80's temperature already and this seems to trigger it off if not aggravate it. I hope seeing a chiropractor does it for you fellow sufferers. I know many have a bad rap so you should scout around, see a few different ones, there are many different ways they go about their practice. Good luck!!
Dave Guzman <>
North Miami Beach, FL USA
Wednesday, April 07, 1999 at 18:43:54 (EDT)

I have headaches about four to five times a week...I need help in getting rid of my pain!
April Houser-Mashburn <>
Maynardville, Tn USA
Wednesday, April 07, 1999 at 17:49:43 (EDT)

In the past few days I've put up a few posts and now realized that I never introduced myself. My nme is Todd, I'm 21 and was diagnosed with Chronic CH in '95, since thenI've had only one period of remission, 2 weeks, and that was in '96. No prevenative medications have worked for me, verapamile, sansert, now my doctor has me on both of them, but still, I have 5-7 headaches a week, sometimes double. They have totally ruined my life, I live in constant fear of the next one. Oxygen is the only abortive that I tried, and I've had it in my home for about a year now. I haven't had a real job since '96, I worked at a gas station up until a few months ago. Now I'm not even working, I afraid to get a job, because I can hear them now, "you have to go home because you have a headache?" Then I'll end up quitting just because they wouldn't let me go home otherwise. Which leaves me jobless. This really sucks! I want to be normal again. I miss being able to go away on vacation and stuff like that. My last girlfriend, ('97) couldn't deal with them and I haven't been able to find another one since. THe only support I have is my family, well, my parents anyway. I have two older brothers, but one thinks the CH is just a regular headache and that I make it seem worse than it is, and the other one tries to understand, but I know he doesn't. My father still thinks I could get a job because "you don't have a headache all the time" My mother is the best support I have but even she doesn't know the phycological battles CH puts me through. To live in fear 24 hours a day 7 days a week. I get so pissed when ever somebody thinks it's just another headache But just once, I like to see anybody who has questioned them to get just one CH, but hey, I guess we're the "lucky" ones. -todd
Todd Amundsen <>
North Andover, MA USA
Wednesday, April 07, 1999 at 10:48:57 (EDT)

I've had CH's for 24 yrs. The most embarrasing thing is to get them with friends or at work. The beast takes over and there is nothing you can do. First I thought it was exercise,smoke alcohol,climate,genetics,or stress. I don't think it's any of these. Just bad luck, but it does make you stronger in the dealings with life. Wishing the best to all.
alex raffini <>
spokane, wa USA
Wednesday, April 07, 1999 at 01:18:12 (EDT)

very informative site. I can relate well withthe message writers, particularly "Anonymous". He/she should be a writer! I liked thr part about smashing the phone receiver against the head..we've allwanted to do it. Just hang on!
Dennis M. Haggerty <>
Succasunna, NJ USA
Tuesday, April 06, 1999 at 21:48:24 (EDT)

THanks for a very informative nsite! I have printed out the 24 page report, and bookmarked this site. I will be checking in often.
Paul Savage <>
Sun City, AZ USA
Tuesday, April 06, 1999 at 19:36:48 (EDT)

I would like to hear from anyone else who suffer from Cluster Headaches. I have been having these headaches for some l5 years and have only been told there is a name for these headaches and left completely in the dark about them.
Linda Tinker <>
Petts Wood, Kent england
Tuesday, April 06, 1999 at 17:13:09 (EDT)

looking for the right medacation
barney <barney6964>
long island, n.y USA
Tuesday, April 06, 1999 at 17:01:25 (EDT)

I am 29 years old and have been getting Cluster Headaches since I was 21. I have never met any other person who suffers from Clusters and I don't believe anyone except my wife truly understands how upsetting and troublesome these headaches are. One of my main triggers is cardiovascular excercise. Which, is really upsetting for me, because I enjoy working out and all kinds of sports. I was a student athlete in high school and now I am afraid to go for a ten minute jog, for fear I will have a headache. If there is any inforamtion related to Clusters and excercise I would love to see it. It pleases me that there is a web site such as this where other individuals understand the pain I suffer during a Cluster Headache.
Matthew Vargas <>
Largo, FL USA
Tuesday, April 06, 1999 at 15:45:34 (EDT)

This has to be one of the better sites that I've seen. Does anyone know of any comprehensive studies of CH that might point to a common cause? I'm two weeks into my cycle and prednisone helps but the side effects are not so good though. I know the answer to a cure is out there, we just haven't asked the right question yet!
Paul L. <>
Syracuse, NY USA
Tuesday, April 06, 1999 at 13:51:32 (EDT)

I am a 33 year old female. I have been getting cluster headaches since I was 12 years old, same story the doctor said I had a sinus infection, I had teeth pulled and cavities filled(they thought for sure this was the problem). My own mother would hide the bottles of aspirin from me because I was taking to many, not that they helped at all. I have a few reasons for writing one is to say that I am so so sorry for all of you. I actually cried when I found this site I can not believe all the people who experience the same exact pain as I do. I feel terrible that you all have to go through this too! I just started getting my headaches again, and I honsetly don't know if I can go through this again. I had to switch my doctor to one who knows nothing about me (due to insurance reason, my original doctor I have been seeing since I was 19 does not accept my insurance). He was the only one that was able to help me and diagnosted my condition in the first place. My new doctor put me on lithium which so far has not worked. Every day the pain is getting worse and worse, and the headaches are coming on more times a day. So far I am up to 3 a day, the worst will come when it hits 6 a day. I wake up with such dread wondering if today is the day for 6 of them. SO far I have been able to sleep through the nite except for the other nite which is also an indication that I won't be so lucky pretty soon. THey usually last 3 to 4 months and than boom thay are gone. I am praying for that day for me and for all of you. Can I please take a minute to say thank you to my husband Ben, he is my life saver. He has never had a ch but he is always so good to me when I get them. He knows to stay away from me and not to keep checking on me to see if I am okay. He justs let me do my thing and towards the end of an episode he is always waiting to give me that ice cold wash cloth to put on my face and temple. He understands why I can't make any plans to go out and never makes me feel like I am dragging his life down he stays home with me just to make sure I am okay. I love him dearly. I know this is probably a long letter to read but I had to vent. Thank you so much for letting me do this. I will be thinking of you all around 2:30 p.m. this afternoon when the first of 3 or maybe today it will be 6 headaches will hit me. 3 to 6 hours of sheer hell! Thank you again for letting me say a few things though I could go on forever. You are all in my prayers!
Linda <>
Windsor, Ma USA
Tuesday, April 06, 1999 at 11:35:53 (EDT)

Son of a CH sufferer. I am the "internet junky" of the family, and happened upon this site. It's been theraputic for me, can't wait to share the info with dad. Hope to set him up and get him online with all of you. My prayers are with you. As many have said, I have NO idea how you endure this pain.
Dennis <>
Ord , NE USA
Tuesday, April 06, 1999 at 09:59:27 (EDT)

I have been getting clusters for 25 years. They started when I was in junior high school. I like most people have never met anyone who suffers from clusters. Right now I would just like to known why when there are articles in magazines about clusters I am male, heavy smoker, and heavy drinker. None of this is true in my case. But I still suffer, the same. It's nice to see others who are hitting their heads against the wall.
Andra Slonecker <>
Monday, April 05, 1999 at 22:52:25 (EDT)

I have been getting clusters for about 3 years now. i need help finding better treatments
J.D. Loeks <>
Monday, April 05, 1999 at 10:17:30 (EDT)

I am a 35 year old female who has had subchronic c.h. for about 8 years. My mother suffered from them, but unfortunately she died a couple of years before I started to get them, so I never had chance to talk to her on the subject. As I have never met anyone else who suffers from them, and who therefore understands, I am thrilled to find this and other web sites about c.h. I have already found out more than any doctor has ever been able to tell me !
London, U.K
Monday, April 05, 1999 at 09:53:00 (EDT)

Hi, i am a 19 almost 20 year old female which suffers from CH i was diagnosed with these terrilbe things back in march of 96 my Jr. year in HS i hae not had probs. until this past week, i not only have Ch but suffer from Nerofibroumatosis as well. I don't knwo who has thes in my family for i was adopted, and dont' have the medical info i need so if anyone knwos anythign here is soem info I was bron on may, 7, 1979 in Chyenne Wy. my birth name was baby "lange" my birth mom was 14. please help if at all possible.
Lori <>
WheatRidge, Co USA
Monday, April 05, 1999 at 01:17:01 (EDT)

Try this! Tiger Balm. An all natural salve which I purchased in a General Nutrition Center (GNC) at the mall. Rub it on your temples and over your eyebrows. Add ice pack to top of head, or not. Careful- the balm may irritate sensitive skin.
Mike Birchmore <>
Blue Ridge, GA USA
Sunday, April 04, 1999 at 18:38:20 (EDT)

I have been cursed with clusters for 12 years. I thought I was the only one in the world that suffered this (not to mention being in the minority of female cluster sufferers). Nobody could understand what I go through except for another ch sufferer-and until this day I havnt found any! Thank you for creating this fabulous site! I am amazed at how many people go through exactly what I do. I feel for you all! Hang in there--new discoveries are made everyday in the world of medicine! It's tough-but I try to stay optimistic. Enjoy those high's when the pain is over and remember you are not alone!
kathy w <>
tacoma, wa USA
Sunday, April 04, 1999 at 14:16:14 (EDT)

As an 18 year sufferer I'm glad to finally find a site that understands the difference between migraine and Cluster. After 2 years clear, I've just started a new series and since the previous one lasted 5 months I have no real idea what to expect. Between the incredible pain and the ridiculous cost of anything that works I stand praying that I will again survive this series. I'm sure I will be paying frequent visits to this site. Thank you for being here.
Jason Armstrong <>
Corpus Christi, TX USA
Sunday, April 04, 1999 at 06:30:02 (EDT)

I'm at the end of my current (late) cycle. It was due Spring 98 and arrived January 99. 520mg\day verapamil + 2 Imigran injections\day multiplied by 8 weeks of fear, fatigue and intense pain has again departed as quickly as it arrived. Till next time, regards Andy Kowalski 4th April 99
Andy Kowalski <>
London, United Kingdom
Saturday, April 03, 1999 at 18:13:03 (EST)

Thanks for being here. I really want to with some folks who know the horror of these "suicide headaches." They suck. I suffer and so does my family. When Iwas eighteen, I had Hodgkin's Disease, yet the splenectomy, the radical chest surgery, and the radiation therapy were a walk in the park compared to these monstrous headaches. My prayers are with all of you. Hang in there. The medical community, with its draconian approach to relieving pain, is staring to hear our cries. Thank you for being here.
Rob Bohn <>
St. Albans, VT USA
Saturday, April 03, 1999 at 17:51:20 (EST)

Thank God you are here. No one but those who have the dubious honor of suffering from clusters can understand the horror of the aptly named Suicide Headache. When I was eighteen,I had Hodgkin's Disease, underwent excruciating surgery in forms of a splenectomy and radical therasic (SP?) surgery, and radiation therapy, but none of this compares to the physical and emotional pain of a cluster. I want to chat with someone and let the general public in on the therapy I now receive. I used to take tons of Percocet which has screwed my ears up and caused savage depression, but steroids and Imitrex have give me a new lease on life. Thanks for being here.
Rob Bohn <>
St. Albans, VT USA
Saturday, April 03, 1999 at 17:46:28 (EST)

Ironic, but it is nice to find a place where you are not alone. People who do not suffer from Clusters can not understand, it's nice to find a place where you are.
Houston, Tx USA
Saturday, April 03, 1999 at 12:32:22 (EST)

Great to finaly join you. Thanks for being there!!!
Tim Dalton <>
London, England
Saturday, April 03, 1999 at 11:12:34 (EST)

It's amazing to find a place with so many other people who experience cluster headaches. I'm 30 and am currently going through about my fifth spell of these damn things in as many years! As we all do, I wish that there was some cure. The last two spells have been stopped by acupuncture, although this time it hasn't helped at all! I have also tried an osteopath - he clicked my neck and it made things worse (more attacks per day and higher intensity). One thing that has helped me this time is to rub 2 to 4 drops of lemon pure essential oil into the temple as early as possible after the onset of pain. It usually reduces both the duration and severity. -I know that it doesn't sound very likely, but give it a go, (it works better that Cafergot!)...
David Bruml <>
Friday, April 02, 1999 at 11:57:40 (EST)

I am glad to see i am not the only one in the world who is going through this i am only 20 and have been having CH attacks since my freshmen year in highschool I am on Midrin right now, but the only way it help is if i fall alseep even for as litte as 5 minutes, and when i wake up the pain is gone, but that is very hard to do considering i spend most of my time at work. I have also found that sleeping with a heating pad on the right side of my face (where my attacks occur) helps me fall back to sleep in the morings and dulls the pain emmensly.
Danny Yoder <>
Arab, AL USA
Friday, April 02, 1999 at 11:00:43 (EST)

I began getting them when i was 18, now 43. The best treatment for me has been amitryptylene, bellergal-s, and oxygen. This has been the best for nite treatment. In the day time Wygraine seems to do ok. I dont get them often in the daytime unless they carry over from the nite. Usually, same time, same place, same relentless pain. The only reason i have not blown my head off is cause i know they only last about an hour. But for 6 years when they first started, no one knew what to do with me...they sent me to the shrinks. 3-4 of them a was horrible. Imitex does seem to work, especially if u feel it comming. I find that no one drug works by itself. Now I go about 3 years between attacks. My doc says to ALWAYS keep the bellergal around, and start taking it at the first sign. The best thing is to never really let them get going, cause then they are like a train. He is now retired and I am scared to death. The search again for a doctor who is willing to learn how to treat them is difficult. I know something good will come from all this suffering someday. I wish everyone the best of luck, my eyes fill with tears to read how similar all of our stories are. The misdiagnosis, the inability of many docs to comprehend what CH means. If they could experience just one of them, even for 5 minutes, I think we would all be better off. BUT, I wouldn't wist it on anyone. It does rank high as one of the most painful things known to man. I have read that in books of anesthesia and pain management...but it was not till then that I felt like I was not the craziest SOB in the world. Better living through chemicals...Peace to all.
donna <>
dallas, tx USA
Thursday, April 01, 1999 at 22:23:21 (EST)

I have a 3 yr. of little girl that is suffering from what the pediactic neurologist think are CH! She has had a sever head ache , on the right side of her head , everyday since Sept. 1998. I would like any info. any one has that might be of help!!!!! She is currently on pediapred and propranolol. We are suppose to start her on verapamil tomorrow. I am glad to have found someone to talk to. Thanks.
Thursday, April 01, 1999 at 16:59:50 (EST)

I'm so glad I found ya'll ! This is new to me , but know I'm in the right place. Thanks Lord !
Bish Craig <>
Houston, tx. USA
Thursday, April 01, 1999 at 16:05:56 (EST)

I started out with migraines as an adolescent and took numerous drugs to break the cycles. In the past five years the migraines changed to cluster headaches. I can go CH free for a year and then it stikes. I live in fear to go places, because I may have an episode. It is awful. I have a wonderful family, but my two small children and husband do not understand. Lying down or taking a pill does not relieve the horrible persisting pain. It angers me to live my life in fear. I feel that these things (CH) are an entity and that they adapt can to the different medications I take. It's like they have a life of their own. This may sound strange, but I am sure others have felt the same way. Right now, I have been taking amitriptyline and indomethacin daily for the past two weeks. It does not seem to be helping, but, of course, I have not given the meds time to get into my system. I am glad I have found this website. As the saying goes, "misery loves company".
Lana Kramer
Thursday, April 01, 1999 at 10:29:53 (EST)

Just have been diagnosised with "cluster headaches, one side life. I also have MS. I really thought the pain was associated with MS, but my neuro says no he just started me on Zomig, haven't had to try it. I did purchased Caprizan cream a few weeks ago and that does help. I have suffering for about 4 years, used hot water,ice bag and tylenol. attacks are increasing in intensity and reoccurence. put me down faster than my MS. Just wanted to say hello, i truly learn more from this "partner in pain" sites, same with MS than I do from my doctors. Thanks again for being reachable Have a nice holiday
Agnes Gallo <mommomg1>
Buena, nj USA
Thursday, April 01, 1999 at 09:01:13 (EST)

The internet is a beautiful thing. I Thought I was alone now I have found my friends. So far Imitrex has been the only drug to really impress me. I've been living with CH for 18 years, it depresses me to find that some people never grow out of this condition. I'm 28 yrs. old now and I very frustrated about the lack of public knowledge of CH. One thing I have learned is never be embarassed or ashamed even when doctors or employers don't understand. F them if they can't relate. My friends, you have my upmost respect for living the way we do.
Richard Novotny <>
countryside, IL USA
Thursday, April 01, 1999 at 08:49:43 (EST)

Hello everyone, This is the first time I have heard of cluster headaches. At first I thought is was another name for migraines. As I read I could see they are similar in some ways and very different in other ways. In the early spring of 1997 I started getting headaches. The doctor treated me for tension headaches. I have never fit into the category of migraine headaches. Because I don't get any of the other symptoms. i.e. nausea and such. I was born with cataracts so being light sensitive is common with me. As I read I don't fit into this category either. Because since the spring of 1997 I haven't gone a day without a headache. The only time I'm not in pain. leveling from 3 to 8 with my hernia surgery as a 10. Is when what ever meds I'm on are at there peak of effectiveness. I went to a headache clinic and was told they are rebound headaches from chronic use of analgesics. So I was told to stop everything that worked everything that I enjoyed in the way of food. I was told in a few weeks they would go away. I went two months of the worst headaches I have ever had. The clinic suggested to my doctor what to prescribe. That included midrin. propranolol, amitriptyline, ibuprofin, & last but not least the famed $15.00 a piece amerge! The propranolol has helped with my border line blood pressure but not with the headaches. And the advil is affective in doses of 1000 mils. The amerge made me sick with heartburn and the worst headache of all. The midrin is an analgesic! Before going to the clinic the doctor had me taking altram during the day and vicodin at night in sever cases. That was the first time they were under control in two years. Now he says no they are analgesics! Well so is midrin and the altram/vicodin worked as apposed to midrin not helping very much at all. I finally got a referral to a neurologist. I'm hoping he can help. Does anyone have any suggestions ...Thanks!
Rick Byrd <>
Republic, Mo USA
Thursday, April 01, 1999 at 03:50:55 (EST)

Hi, I'm relatively new to these headaches, but it's nice to know there's a place to go for support. I got my first cluster headache 2 or 3 weeks ago. I was no stranger to sinus headaches, so I assumed that's what it was. But I got scared when, for the first time ever, the sinus meds didn't work. I started doing my research... pain behind the eye, spreading to the face, lasting for half an hour, same time of day, starts in early 20s (I'm 20) It was a relief to know what was wrong. However, my mom is less than convinced. She thinks I need glasses or something, and I KNOW that's not it at all. Any idea on how I can persuade her? Well, I hope this site is active, meaning there will be people here I can talk to and cope with... bye!
Dave <>
East Lansing, MI USA
Thursday, April 01, 1999 at 03:21:50 (EST)





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