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

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

 

Clusterheadache also exists in Europe !
PATRICK <albedo53@aol.com>
PARIS, FRANCE
Thursday, December 31, 1998 at 17:23:32 (EST)

I'd like to try oxygen for my attacks, but my insurance company has been difficult -- they don't recognize it as a legitimate treatment. They did finally agree to a trial during my last spell, but by then the cluster was nearly finished. I used a portable tank with a cannula, but believe that was not very efficient. I have seen athletes on the sidelines using O2 tanks with full face masks. That looks like what I need. Anyone know where to get oxygen equipment like that?
Rick Brunk <rickval@fidnet.com>
Rolla, Mo USA
Thursday, December 31, 1998 at 13:00:21 (EST)

I have suffered clusters for fifteen years, sometimes going as long as four years between episodes. My current bout has lasted three months and is being treated with o2 and medication. The drugs I am taking are ultram, crproheptadine, and ercaf. I can avoid attacks provided I take them nightly before bed. On nights that I have not taken them, I always awaken a few hours later with a full blown headache. Has anyone else used this combination of drugs?
Judi Lages <jlages@aol.com>
Denver, CO USA
Thursday, December 31, 1998 at 12:04:48 (EST)

I cannot begin to tell you how overcome I am by depression--I suffered with CH from my teens for over 30 years. When we moved to Alaska...they went away. Since then (through several states and almost 15 years) I have be CH free. Wonder what the record is for remission? But I remember the symptoms...and my right eye is singing the old sad song. Alas...I have spent the last three hours--I don't want to go to bed because I know what's coming--looking at the state of the art of remedy. I am struck by the fact that we don't seem to be any further along today as we were in 1985. Looks like Oxygen is still the order of the day...but I sure was hoping for a silver bullet or something. My wife suffers from Migranes...they've made good medicine for her. Wonder why we CH sufferers haven't rated any better at the hands of our medical community. Well...I'm back in the headache business. If you have a cure...or suggestions beyond 10 liters/10 minutes...I'd love to hear from you.
Steve Williams <slwilliams@harding.edu>
Searcy, AR USA
Thursday, December 31, 1998 at 07:13:08 (EST)

I just found this site tonite, and what a great feeling to know there is a place to talk to others who "understand". I must admit I got a tear in my eye for two reasons when I read some of the letters, the first being that I know exactly what you are feeling, the second because I know I am going to experience that hell countless more times in my life. marc
Marc <Deadhed@Hotmail.com>
Island Lake, IL USA
Thursday, December 31, 1998 at 00:14:33 (EST)

The benedryl, aspirin and coffee really worked. (Thanks Brandon, I really do love you!). Haven't taken any since the night before Christmas Eve. I think it ended my cycle. Anyone interested in the particulars, let me know. I hope it can help all of you. Since I have been dealing with CH for 27 years, since I was 10, I do know how you all feel. This cycle that just ended began in August. The pain occured at least 5 times per night, with no night off. It feels wonderful to sleep again, and my husband and four children are no longer walking on eggshells because of my bad mood, lack of sleep, lack of food, and pain. This REALLY WORKED for me. Give it a try. Happy New Year to all, and I hope I hear from some of you.
Betsy Gabelt <sgabelt@neo.rr.com>
Alliance, OH USA
Wednesday, December 30, 1998 at 23:42:32 (EST)

Hello. I'm 26 years old and have been suffering from cluster headaches since I was eleven. I've just recently begun to get help because no one could tell me what the hell was wrong with me. I learned what a cluster headache was four years ago while reading an advertising supplement for Tylenol in Newsweek. I am currently taking verapamil which did work for about nine months, but is now just an expensive placebo. My doctor's answer was to "up" my prescription level. The most frustrating part of all this the fact that NOBODY SEEMS TO UNDERSTAND. My roomates used to look at me like I was some kind of freak when I'd bash my head against the wall in the middle of a serious attack. When I was younger my parents dismissed them as "growing pains". Now I'm married and my loving wife does her best to comfort me (along with my cat!), but I can see the frustration on her face when I wake up ar 2 am crying. How do you explain to your boss that you can't work because you've got a headache? I've worked through many of my CHs out of fear of losing my job. Thank you for this site. Thank you very much.
Dave Moll <dmoll@henge.com>
Denver, CO USA
Wednesday, December 30, 1998 at 23:24:17 (EST)

Have just finished Dawns letter,and the rest..Dawn I`ve been so there please keep trying. I`m 45 and 25 years of CH,I`m so thankful for the chance to meet you all... I don`t feel crazy any more...thanks friends for being there. Wish we could have met under happier circumstances. Will talk again soon!!!!!!
Jan Nelson <nelson@supernal.net>
La Conner, WHaa USA
Wednesday, December 30, 1998 at 23:08:15 (EST)

Hi Guys. Been there for 14 years (43 years old). Know what a 10 out of 10 is. Keep the faith. I don't want to ginx anything but, I have gone from 16 month cycles to 3 years. Duration of cycles has gone from 6 LONG weeks to much less and severity is waneing. What I am saying is it might not be as bad as you think forever! I am in the 4th day of a cycle today and I am not afraid anymore. Happyness is an "H" tank of oxygen next to the bed, and a portable in the pickup truck. I beg you guys to try the oxygen. Plug yourself in ASAP when things start to get weird. Don't lay down because you will fall asleep when the pain goes away and continue to suck the cylinder dry. Very expensive! I have not found it to be a magic bullet. Ya, I still know I am having a cluster headache, but what other treatment comes with a regulator on it? One last thought. Everyone should reguest a copy of the "Insert" for any drug you are taking for cluster and READ IT! God Bless you all. Things CAN get better.
Ned <emcmanus@snet.net>
USA
Wednesday, December 30, 1998 at 20:38:46 (EST)

have had clusters for 15 years
KEN MILLS <KMILLS8018@AOL.COM>
FT. WALTON, FL USA
Wednesday, December 30, 1998 at 13:13:15 (EST)

I'm a 29 year old single mother of a 12 yr.old son.I've suffered from chronic cluster headaches for 21 years.I have been on EVERY medication you can think of,been to 3 pain clinics,chiropracters,dentists,eye,ear,nose and throat Drs,neurologists,etc.At 15 I had my vegus nerve cut and a third of my stomach removed in hopes that it was the acids in my stomach causing the headaches(didn't work).At 26 I had a hysterectomy thinking it was because of my cycle(didn't work).I've been at Mayo Clinic in Rochester,MN where they said "Cluster Headaches,we don't know the cause and there is no cure."and turned me away.Last August I got on SSI because I cannot hold a job.I get my headaches every night and 2/3 times a day.I end up in the hospital as inpatient a few times a year for dehydration because it is so hard to eat and drink when in such pain.I would go to the ER for Demeral and Visteral shots a few times a week until they said no more-to much Demeral.I'm now taking Nerontinin with no evail.And I take Stadol and Darvecet for the pain.I hope someone comes up with an answer. I cannot keep living like this.My son is suffering as when I get so I can't scream in my pillow and he hears me he walks(runs)whatever with me holding ice packs for me at 3 in the morning.HELP!!!
Dawn Johnson
St. Paul, MN USA
Wednesday, December 30, 1998 at 12:31:26 (EST)

Have had cluster for 15 years and have taken everything from Sansert to Oxygen, presently on Depakote and Neurontin. Really have not had relief, pls help
bailey, James
Colo Springs, co USA
Wednesday, December 30, 1998 at 11:36:59 (EST)

Thank you for this site! It is great!!
Bruce Miller <wolf_man68@hotmail.com>
Frostproof, Fl USA
Wednesday, December 30, 1998 at 11:01:58 (EST)

Have two to three week attacks of CH each December or January every 3 years. Have have pretty good results with Indomethacin (though sometimes it takes as much as 1 hour to kick in) so I try and anticipate attacks. Thanks for the additional information.
Sid Kalmans <kalmans@hotmail.com>
Naples, FL USA
Tuesday, December 29, 1998 at 23:56:02 (EST)

Hi there! I'm 38 years old and have not (yet) been diagnosed as a CH sufferer. I do have severe headache attacks which resemble CH very much although I do not have any of the 'tell-tale' accompanying symptoms (red eye, tears, stuffy nose etc.). Attacks are NOT triggered by alcohol or cigarettes. My first episode was 10 years ago (never diagnosed) then 5 years ago (diagnosed as a too heavily stressed jaw muscle (treated by dentist). Now the attacks are back. My dentist insists it's either TMD or CMD, my fysiotherapist says my neck muscles are too tense and my physician thinks my spine may need adjustment by a chiropractor. I've had all sorts of painkillers prescribed to me but none of them work. Currently I take Imigran (tablets). If these work I don't know. The tablets take such a long time to work that the attack might have subsided on its own before the effect of the Imigran sets in. What seems to give some relief is a warm compress held to my temple and in my neck. Sometimes a hot shower gives relief. Could anyone tell me whether or not CH might be what my problem is? Whether or not I do have CH, I would like to give my sincere sympathy to all of you with this terrible affliction. Best regards, Paul
P.J. Reijling <P.Reijling@speed.a2000.nl>
Zaandijk, The Netherlands
Tuesday, December 29, 1998 at 19:23:25 (EST)

I have had cluster headaches for about 4 years now. I only get them once a year, and they seem to occur when I am having some stress in my life. I am a 36 year old male. I have never taken any medication for my headaches; I simply battle with them while they are occurring. I found this site about a month ago and am using many of the remedies to combat the pain. I found that a strong, self-massage to the back of my neck (left side for me) reduces some of the pain, but not all. Hopefully my 6 to 8 week "session" is just about to end. I have some important goings on in the next several months that don't need to be interrupted by these wonderful headaches!! I'll keep on reading all of the info. on this site. It is very helpful!!
Randy Brown <rjb615@asu.uswest.net>
Mesa, AZ USA
Tuesday, December 29, 1998 at 17:41:56 (EST)

I am a 55 year old woman who started having cluster headaches only six years ago and they've ruled my life until I will do anything to get rid of the pain. I've been lucky to find two doctors (partners) who both have this problem - one migranes and the other clusters. But I just found them after six years of looking. Hopefully, we'll start seeing some improvement in the very near future.
Barbara D Henderson <bcenter123@aol.com>
Gladewater, tx USA
Tuesday, December 29, 1998 at 13:00:03 (EST)

I'm in my 31st year with CH,and at age 44 am still being treated like a child/drug addict by the system. In 1978 I was put on propanynol, which made me sick, so checked at the medical library to discover that this was to be combined with methamphetamine in order to be effective. The doctors were angered. Four years ago a psychiatrist started me on desoxyn for adhd, and I was HA free through the year, until he changed his mind about the diagnosis. Throughout the following year I spent most of my life searching for relief through doctors and overdoses of useless medications provided by those doctors. Finally I found a good doctor who chooses to trust his patients. He put me back on the desoxyn and it's been 2 years since I've seen the inside of an emergency room. I also use stadol to prevent the whopper that starts the cluster series. Unfortunately, I no longer have access to the good doctor's care, and all others I've seen admit that my quality of life has improved immensely, but they're unwilling to prescribe, and "sorry you're having a bad time". I ran out of medication on Christmas eve, am awakened several times nightly by nightmares(being pushed into the black seas), and am trying to forget the overdose that I haven't picked up at the pharmacy from the last doc I saw. Thanks for listening.
miranda kyhill <mmalcolm@hotmail.com>
albany, ny USA
Tuesday, December 29, 1998 at 11:37:59 (EST)

Im inbetween series,mine come every five years,three more to go...Sumatripten worked for me last time.It was my worst one yet,eight weeks and 100 CH later.Ive been blessed for 25 yrs have to go now...thank you all for being there. Ill be back!
jan nelson < www.nelson@supernal.net>
La Conner, Wa USA
Monday, December 28, 1998 at 23:22:33 (EST)

Hooray for this site!!! 46 yo Had this bad head off and on for 10 years! Tried a lot of the drugs I just read about in the information here. Over the years I have found it difficult to put in words the pain and disability of CH to people..after all everyone has headaches right? Anyway thanks for this site and I'd like to hear from anyone who would care to comisurate!
Bill Hughes <wvbill@televar.com>
Yakima, WA USA
Monday, December 28, 1998 at 21:43:44 (EST)

My name is Jason and I have been suffering from CH for about 5 years. Until recently prednisone has worked great for me. 4 weeks worth and the headaches would go away for about a year. Also while on the prednisone I would be headache free. But this last bout has been bad and the prednisone does not seem to be working. Its very depressing and upsetting.
Jason Leokum <jleokum@voicenet.com>
Horsham, Pa USA
Monday, December 28, 1998 at 02:54:58 (EST)

Hi there, my CHs show up once every 18 months and I take Lithium 3 times per day, 300mg, for 3 weeks. Lithium seems to work but the side effects are brutal. I am currently in talks with doctor to get rid of these side effects. My case is probably fairly mild compared to some others that I have read so I consider myself fortunate. Good luck to all and let us hope that the scientists/doctors figure this one out as soon as possible. Stefan
Stefan Thomasson
Bellevue, WA USA
Sunday, December 27, 1998 at 16:04:10 (EST)

I have been a sufferer of CH for around 5 years and am currently in my worst cluster since they began. Until recently I was on 320mg Verapimil per day which did not appear to help and my Doctor has changed this to 80mg half-Inderal La a week ago, so far with no effect. I am getting headaches about every 2 hours commencing around 20.00hrs and ending around 08.00hrs. This cluster will probably last for about 3 months, I seem to be relatively free during the summer months when, here in the U.K. we have longer days than nights. Is there a link I wonder!!
Terry Cheatham <teecee01@globalnet.co.uk>
Cheltenham, Glos U.K.
Sunday, December 27, 1998 at 15:17:28 (EST)

I have been a sufferer of CH for around 5 years and am currently in my worst cluster since they began. Until recently I was on 320mg Verapimil per day which did not appear to help and my Doctor has changed this to 80mg half-Inderal La a week ago, so far with no effect. I am getting headaches about every 2 hours commencing around 20.00hrs and ending around 08.00hrs. This cluster will probably last for about 3 months, I seem to be relatively free during the summer months when, here in the U.K. we have longer days than nights. Is there a link I wonder!!
Terry Cheatham <teecee01@globalnet.co.uk>
Cheltenham, Glos U.K.
Sunday, December 27, 1998 at 15:16:42 (EST)

This is the first time I have seen this board. I notice that most of the CH sufferers are male. I was surprised to see that. I am in the middle of a cycle right now and was wondering if anyone else was given Procardia XL (blood pressure medicine) to break the cycle? That's what I am using, but it takes a while to build up in your system. I take sinus medicine and Ibuprofin every few hours to get by.
Jill <Jillbz@aol.com>
Plantation, FL USA
Sunday, December 27, 1998 at 14:06:06 (EST)

I have had clusters since i was about 38 years old and am now 52. Mine come every 2 years, usually in August. This year the started in December and I get about 8 to 10 attacks a day. At night about every 2 hours, somrtimes every hour. I am using oxygen at 15 liters and it usually takes about 15 min. I am starting on prednisone tomorrow.
Steve Ireland <SIRELAND3@COMPUSERVE.COM>
San Diego, CA USA
Sunday, December 27, 1998 at 13:15:05 (EST)

I am 66 yeras old I was a sufferer for over eight years, I have now been in remission for over eight years. As all sufferers the pain was unbeleivable, from about age 58 I have not had an attack, touch wood.
ARTHUR MARKS <anmarks@iaccess.com.au>
Scoresby, Vict Australia
Sunday, December 27, 1998 at 08:41:59 (EST)

What a worderful site. My first CH was in 1954 and the last one was in 1984. For many of those 30 years I thought I was the only one who suffered from CH. This web site, I'm sure, takes away that one burden that CH sufferers during my episodes did not know, that there are plenty of others and that helps.
Ben Lopez <webmaster@elecimp.com>
Manassas Park, VA USA
Sunday, December 27, 1998 at 00:51:19 (EST)

Would like information about new technologies and treatments re:cluster headaches... Thank you in advance
Donald R. McGee <donald@roadrunnersw.com>
Chesterland, oh USA
Saturday, December 26, 1998 at 17:13:44 (EST)

Hello! What a feeling to have found this website! I've dealt with Cluster Headaches for 15 years, I don't even try to explain them to anyone anymore, they just don't understand. I just deal with it myself - but now, I can at least communicate with people that know what I am talking about! Please excuse all of the exclamation points, I'm a little excited. I'm actually in my 4th week of a cluster (they usually last 5 or 6 weeks). After years of trial and error, I have finally found that a combination of prednisone and verapamil taken throughout the cluster prevents the headaches and allows me to lead a relatively normal life. In the case of a headache, Imitrex shots. I could go on and on, but hopefully I have a lot of opportunities to "vent" now that I have found this website. Kate Garnaat kgarnaat@aol.com
Kate Garnaat <kgarnaat@aol.com>
Arnold, MD USA
Saturday, December 26, 1998 at 16:23:44 (EST)

I am now 22 years old and have lived with episodic CH about once a year for 4 years. Only problem is that I was recently diagnosed correctly so until now I have been taking the wrong medications. If you suffer from CH, tell your doctor/neurologist immediately. For actual attacks I breath pure oxygen for about 20-25 minutes at the onset and that seems to stop the headaches in a cheap way. If I get caught out of the house I use IMITREX injections. Verapamil or caylan seems to work very well at decreasing the frequency of attacks during an episode. In any case, please find the right medication for you...THERE IS HOPE!
David J. Krasne <djk18@cornell.edu>
Ithaca, NY USA
Saturday, December 26, 1998 at 15:43:15 (EST)

Dec.25.98 Hi I´m a male 46. Have suffered from episodic CH since I was 20. Last CH free period have lasted 4 years, earlier only 1 to 2 years. I try to get through my CH without any strong drugs. If I take a painkiller when I feel them coming I can usually stop them from breaking through. But I have this feeling that they will break through later and harder. Sometimes I think that it´s like a gun loaded with a certain amount of bullets that is waiting to be fired, and you can only keep them back for some time. I have found much good advice and good theories on these sites. As to theories on daylenght. I live in Denmark. That is as far north as mid Canada. I have had CH in April, August, September, And this time December. I have come across links between CH and sleep apnoa. I find that very interesting. CH often comes at night, and can be prevented by oxygen.
Cai
Denmark, DK USA
Friday, December 25, 1998 at 16:04:45 (EST)

Every time I read about cluster headache I start to cry... it's the fear I guess.
Bradford L. Miller <bmiller@wwbh.org>
North Stonington, Ct USA
Thursday, December 24, 1998 at 13:30:27 (EST)

My second entry. My h/a got so bad last night that it took a trip to my MD and a demerol shot to reduce them. It didn't take it away completely though. I woke this a.m. with aanother h/a at about a 4 and it's been wavering between 3-6 so it didn't break the cycle. My MD did give my some prescription pain relievers to get me through the holidays so hopefully they can relieve them so I can enjoy it with my family. Nothing much else going on for now, good luck and happy holiday to all of you. Paul in Utah
Paul <utahwolf@aol.com>
UT USA
Thursday, December 24, 1998 at 13:29:14 (EST)

Hello, I am a male, will be 46 next month and have been suffering Chronic Clusters everyday, allday, for four years this coming March. I of course thought they were migraines for a long time, but as I've been reading the migraine page and this Cluster page, I'm beginning to realize that they ARE CCH's. I've seen two neuros who just filled me with narcs and then sent me to the Pain Management Clinic at the Univ of Utah in Salt Lake. They've tried a lot of things including DHE and 02 for three days in a hospital (DHE was IV) with absolutely no difference. I've tried so many other meds I can't remember them all. I'm now taking 750mg depakote, 1200mg daypro, 45mg restoryl (for insomnia), prozac for depression, and 5mg 3/day of methadone. they have helped but the h/a's seem to be getting back to their old cycle again, which is simply getting worse in the evening. The last few nights have been the worst in a long time. Sometimes I get very depressed and wish I could die. I'm still looking for answers though. I have tried feverfew, aromatherapy, biofeedback, meditation, with varying results. Sometimes nothing helps and even a shot of Stadol only helped a little. Well I thought I'd write just to see if anyone has the same problems. I haven't read any of the entrys but will as time permits. Thanks for listening and all try to have a happy holidayseason. Paul
paul in utah <utahwolf@aol.com>
ut USA
Wednesday, December 23, 1998 at 13:26:22 (EST)

I am recently diagnosed with CH. For about the past 6 years I've been getting these things under the assumption of sinus headaches or migranes. Recently I ended up in ER. My doctor seems to have a decent grasp of the matter and has me on prednisone and endurol. Any advice on the constant dull ache I've had for 2 weeks now??
Geoff Gilmore <GJgilmore@lrbcg.com>
oh USA
Tuesday, December 22, 1998 at 21:58:25 (EST)

I've finally found something that works at night. There is a product in Walgreen's called TheraPatch Warm. It's a capsaicin product for arthritis. I've found that if I put it on my forehead every night my headaches aren't as bad. This may just be the famous "placebo" effect. The package certainly doesn't say anything about being for cluster headaches. But, hey, it works for me and I'll beat myself on the head with a Coke bottle if it works. Good luck everybody.
Joe Melvin <JoeM758777@aol.com>
Minneapolis, MN USA
Tuesday, December 22, 1998 at 12:01:23 (EST)

I have suffered from these headaches for a long time now. What I have been doing lately is thinking of the times when I have a "cluster headache-free" day (or moment)while hoping that this inner peace in my heart shall prevail forever.
Don D. Ruiz <dondruiz@aol.com>
Phoenix, AZ USA
Monday, December 21, 1998 at 11:12:16 (EST)

I am a 40 year old male who has an extensive history of CH since I was 18. Up until I was 36 the nature and frequency of the bouts was fairly predictable;typical symptoms about every 18 mos. At this time I had taken everything available except a new drug on the market; the injectable imitrex. My last series of headaches started in February '94 and were by far the worst ever - 6 a day, every fours like clockwork. The only thing that has ever stopped these headaches in their tracks for me is the imitrex. After years of suffering I could not believe that my pain would be completely gone in a couple of minutes. My point with this particular series is the intensity and frequency. This went on for about 8-10 weeks, which meant I was far surpassing the limit of injections per week, but I did not care. I would not go anywhere without one. Oxygen did help only if I could get to it at the onset of an attack. Nearly five years have passed since this last series - the longest I have been free from their assault. I'd like to think the last and worst series was the final intrusion of this indescribable pain in my life. I've kept a clear plastic bag full of the old syringes as a testament to how bad life can get. I've never taken a pain-free day for granted since that time.
Mark A. Florance <maflorance@kcc.usda.gov>
Kansas City, MO USA
Monday, December 21, 1998 at 10:40:06 (EST)

As I stated earlier in this forum, I am a 40 year old male who is now in his fourth week of a CH cycle. I had not been able to find any meds that would help with these horrible headaches except for a shot of demerol and phenergan. After many frustrating trips to the ER , my family Dr was able to find a way for my wife to give me these injections at home when it was after office hours. I have also been on verapamil since this cycle started. But just in the last two weeks the Dr had me start taking Desyryl,150mg, at bedtime. I don't know if it is just where I am at in my cycle, but since I started the Desyryl my headache occurrences seem to be decreasing. I can't express my gratitude enough towards DR Edward Zinn, his wonderful nurse Susan, and the entire staff at the Lima Group Family Physicians Inc. for the exceptional care that I have received! I just wanted to let those of you that suffer from this terrible malady,who may be beginning to lose faith in the medical community, that there are health care providers,who are genuine in their concern for their patients.I know from reading in this forum, that there are many who have not been as fortunate as I , to have found such a wonderful group to help me through these terrible cycles. But that is why I'm sharing my experiences here now ,in hope that I may raise the spirits of those of you who feel that there is no hope. There are people around, that really do care!
John Miller Jr. <N/A>
Lima, OH USA
Monday, December 21, 1998 at 03:42:07 (EST)

As I stated earlier in this forum, I am a 40 year old male who is now in his fourth week of a CH cycle. I had not been able to find any meds that would help with these horrible headaches except for a shot of demerol and phenergan. After many frustrating trips to the ER , my family Dr was able to find a way for my wife to give me these injections at home when it was after office hours. I have also been on verapamil since this cycle started. But just in the last two weeks the Dr had me start taking Desyryl,150mg, at bedtime. I don't know if it is just where I am at in my cycle, but since I started the Desyryl my headache occurrences seem to be decreasing. I can't express my gratitude enough towards DR Edward Zinn, his wonderful nurse Susan, and the entire staff at the Lima Group Family Physicians Inc. for the exceptional care that I have received! I just wanted to let those of you that suffer from this terrible malady,who may be beginning to lose faith in the medical community, that there are health care providers,who are genuine in their concern for their patients.I know from reading in this forum, that there are many who have not been as fortunate as I , to have found such a wonderful group to help me through these terrible cycles. But that is why I'm sharing my experiences here now ,in hope that I may raise the spirits of those of you who feel that there is no hope. There are people around, that really do care!
John Miller Jr. <N/A>
Lima, OH USA
Monday, December 21, 1998 at 03:40:32 (EST)

Follow-up again. For all of you thinking that you are helpless and at the mercy of some overworked and unable to understand physician, take some advice from someone who has already been through the physician search. Be assertive and demand available treatment! Be an informed consumer and don't be intimidated by the fact that he or she went to medical school. You are paying for a service, make sure you get what you pay for. READ EVERYTHING available about our syndrome. Try some of the suggestions that are listed here. Don't give up. Keep the faith.
Reece
Lafayette, USA
Friday, December 18, 1998 at 15:34:13 (EST)

I have been suffering with cluster headaches for 9 years on and off. I had tears come to my eyes reading the suffering of others. My pain comes up the back of my neck, over my right ear and settles in my right temple area. It is amazing how fast it happens! I feel the "twinge" and know I need to get the latest medication to attack the pain. I feel an ice pick in my temple and I push on my right eye until I think it will burst. I massage my neck and feel the tendon that seems to be the cause of all of this. WOuld would happen if I just cut it and it couldn't hurt me anymore? My typical bouts last between 2-4 hours of pure Hell. My wife can only watch as I writhe in excruiating pain that will not stop! I am completely incapacitated and cant open my eyes. Ibuprofin helped for a long time 800 MG at a time, then it went to 1000 MG and I got scared. My diagnosis in the past week is cluster headaches and I am now on Propanolol twice a day and Isometheptene/APAP/dichlor Cap 2 to start and 1 every hour thereafter when it returns. I have the headaches about every other day. I call them my "Cinderella Headaches" because they ususally start about 11:45 PM and I dont get relief until 3:30 or so. I pray for God to take this awful pain from me every day and pray that others will not be afflicted as I have been. Bob- Atlanta, GA
Bob Jonell <bjonell@juno.com>
Atlanta, GAGA USA
Friday, December 18, 1998 at 14:21:32 (EST)

I have had cluster headaches since mt early thirties. There is a injection that I found works but costs $40 a shot--I'll get the name and post it. I have found that taking ginger in water delays the cycles (every 1-2-3 years for a few months of 1-3 a day cluster headaches) and since taking ginger the last cycle was short and did not follow the normal pattern of buildup--fullblown--builddown. Instead it lasted a couple weeks with two violent ones (really bad) and more or less the rest were minor and of short duration. Except for ginger and the imitrex(?) injections I have found nothing that remotely helps. Trust this helps some of you.
Richard Smith <smith500@aol.com>
Bland, VA USA
Friday, December 18, 1998 at 09:57:35 (EST)

A very nice page
Måns Båth <mans.bath@svt.se>
stockholm, a sweden
Friday, December 18, 1998 at 05:24:07 (EST)

I am a 31 year old male who has had clusters since the age of 14.I was misdiagnosed with migraines for about 14 of those years.I had tried just about every drug known to the medical profession.I even had one doctor who said there was no preventive so he loaded me up with narcotic painkillers which after awhile actually made my headaches worse. I recently went to a headache specialist in Syracuse,NY.He correctly diagnosed my clusters.I have now tried lithium and oxygen for the first time.The lithium seems to reduce the frequency.The oxygen is helpful if I can catch the cluster at the first sign of onset.But nothing has been as helpful as imtrex injection.I have awaken in the middle of the night with a full blown,bang my head off the wall cluster and taken a shot of imitrex and had full relief within three minutes.My greatest fear in life now is being somewhere without my injection and getting a cluster.I am a postal carrier in upstate NY and you can bet that there is always a shot of imitrex in my mailbag when I'm working.I would advise anyone with clusters to try imitrex.If you are afraid of shots there is a pill form [although the pill is much slower for relief].I can only hope sufferers get the kind of relief I have gotten.I have literally gotten my life back. Good luck!
Jim Phillips <jamee@gisco.net>
Adams Center, NY USA
Thursday, December 17, 1998 at 22:36:05 (EST)

I am a 31 year old male who has had clusters since the age of 14.I was misdiagnosed with migraines for about 14 of those years.I had tried just about every drug known to the medical profession.I even had one doctor who said there was no preventive so he loaded me up with narcotic painkillers which after awhile actually made my headaches worse. I recently went to a headache specialist in Syracuse,NY.He correctly diagnosed my clusters.I have now tried lithium and oxygen for the first time.The lithium seems to reduce the frequency.The oxygen is helpful if I can catch the cluster at the first sign of onset.But nothing has been as helpful as imtrex injection.I have awaken in the middle of the night with a full blown,bang my head off the wall cluster and taken a shot of imitrex and had full relief within three minutes.My greatest fear in life now is being somewhere without my injection and getting a cluster.I am a postal carrier in upstate NY and you can bet that there is always a shot of imitrex in my mailbag when I'm working.I would advise anyone with clusters to try imitrex.If you are afraid of shots there is a pill form [although the pill is much slower for relief].I can only hope sufferers get the kind of relief I have gotten.I have literally gotten my life back. Good luck!
Jim Phillips <jamee@gisco.net>
Adams Center, NY USA
Thursday, December 17, 1998 at 22:22:46 (EST)

Although I've this before, I'll do it again. I am 37 and have been suffering with CH since I was 10. I am in a horrible cycle now but tried a suggestion last night from Brandon (I'll paste in from below), last night when I got my first, and only!!!, CH. It worked within minutes, unlike all the other treatments that have been tried over the last 27 years. Here it is: "Caution: this remedy can make you drowsy and should not be taken when operating equipment or driving). I take two benadryls, two aspirins, and drink one cup of black coffee. Lay flat on your back without pillow for 1/2 hour (I realize this can be very difficult but do your best). If no relief, repeat after 1/2 hour but reduce to one benadryl, one aspirin and one cup of black coffee. Recline again for 1/2 hour. You can repeat this process after two hours." I'm going to be optimistic and believe it wasn't a fluke. If not, I love you Brandon. Thanks, Betsy
Betsy <sgabelt@neo.rr.com>
Alliance, OH USA
Thursday, December 17, 1998 at 14:54:26 (EST)

This is amazing!! I never realized this was such a wodespread problem for so many people. I've suffered from CA's for about 15 years, but only found out what they were about 6 years ago. I always just figured they were exceptionally bad HA's. Then I noticed that I had these "episodes" of HA's for a 2-3 week period. At first it was only these episodes spaced about 2 years apart. About 7 years ago they came on more frequently and I finally sought med advice. They hemmed and hawed, tried many different drugs (cafergot, midrin, fiorinal, and many others), they even suggested a CAT scan to find the problem until a PA finally diagnosed CA's. But still nothing seems to work 100% effective, Oxygen has been about the most consistent for me. Something I noticed from alot of the posted messages and I don't know if it's just coincidence or a pattern, but a lot of people seem to get them around Thanksgiving like me. Could it be Turkey?? (LOL). Hell at this point I would grasp onto any and every straw imaginable to try and find a CURE and not just a treatment for these miserable HA's. Thanx for listening to me spout off and it's great to know I'm not alone. M.E. Shelton
Mel Shelton <MShel31331@aol.com>
Spokane, WA USA
Thursday, December 17, 1998 at 06:44:20 (EST)

I suffer from cluster headaches for 16 years.I have not found anything that help.
Jacob <jleroux@lando.co.za>
Worcester, CP RSA
Wednesday, December 16, 1998 at 23:49:46 (EST)

I am sure many wives have had to just sit by totally helpless while we watch our big strong muscular man drop to his knees with the intensity of the pain. I have also watched as my husband who is like my rock, that has rescued me many times with my own health problems,fibromyalgia, leaning on the counter over the sink sobbing loudly at 3 am when he thinks I am sleeping. I have witnessed my husband leave a wonderful Thanksgiving dinner, trying desperately to wait it out, as we had his injection of Imitrex upside down and it had all leaked out. We had a 30 min. drive to get a refill. While I was drivng as quickly as possible, glancing over at him, the sweat was literally poring off him. His shirt was soaked by the time we arrived home. He never said one complaing word. It was not necessary it showed in his pure white face, the death grip he had on the safety handle next to him,the tears streaming down his face, he would not allow himself to show our passengers, my family how intense the pain was. He amazes me. He will sometimes go 3 or 4 days in a row with no sleep and still continues to go to work each day. He will not let these horrible monstrosities of head pain bring him down. The worst times as far as he is concerned are when he gets them at work. He is a Dentist. I love him so much. Please help, let someone find something to at least make these a little easier to live with. He has been in a non-stop cycle which has not seemed to abate for more than a few days, a week at the most.
cactus doc's wife <Ivoclar2@aol.com>
Glendale, AZ USA
Wednesday, December 16, 1998 at 23:06:45 (EST)

It is good to know other people understand.
Trevor Taylor <tayl7430@mach1.wlu.ca>
Waterloo, OON Canada
Wednesday, December 16, 1998 at 20:48:23 (EST)

I have been a CH sufferer for 26 years starting at age 15. I am presently in a cluster period after a 3 1/2 year remission (which was my longest remission to date). At one time I could set my calendar to them every other year between Thanksgiving and Christmas. I would like to pass on a remedy that has given me a great deal of relief the majority of the time. Caution: this remedy can make you drowsy and should not be taken when operating equipment or driving). I take two benadryls, two aspirins, and drink one cup of black coffee. Lay flat on your back without pillow for 1/2 hour (I realize this can be very difficult but do your best). If no relief, repeat after 1/2 hour but reduce to one benadryl, one aspirin and one cup of black coffee. Recline again for 1/2 hour. You can repeat this process after two hours. I fortunately have only had to repeat this process during two headaches (out of 20 or more headaches) this past two months. I also would not be without oxygen during any cluster period - this seems to both dull and curtail the headache. I have also stopped smoking in 1990 and stopped drinking in 1991 and this seems to have helped by lengthening my remission periods and reduced the severity of the attacks in general. I hope this helps.
Brandon <brandon@gwis.com>

Wednesday, December 16, 1998 at 15:20:19 (EST)

Anyone know of any sympathetic doctors treating CH patients near Fort Wayne, IN?
Jon Gillespie <editor@geneses.com>
New Haven, IN USA
Wednesday, December 16, 1998 at 10:24:58 (EST)

New to the site. Read the majority of the messages and it sounds like we've got a common ground....excrutiating and life altering PAIN. I'm a chronic victim of 10 years and have tried the majority of the treatment modalities available. If it weren't for Imitrex for the most violent episodes, God only knows where I'd be right now. Although I fear and lament what is in store for me, I mostly feel sorrowful for my lovely wife as she has become a helpless bystander in this hideous and vial way of life. The one thing that SEEMS to have decreased the intensity of the episode is that I have accepted the notion that I may be saddled with these monsters for a long time to come. Good luck to all of you and your families!!!
Mark Bride, DDS <cactusdr@extremezone.com>
Glendale, AZ USA
Wednesday, December 16, 1998 at 00:45:07 (EST)

i
Jodi
Brick, NJ USA
Tuesday, December 15, 1998 at 21:35:48 (EST)

I can't beleive I found this site. For a while I thought I was the only one in hell. No offense, but I am glad I am not the only one out there.
Jodi
Brick, NJ USA
Tuesday, December 15, 1998 at 21:31:40 (EST)

I've suffered for 10 yrs from clusters.4 yrs being cronic.At times it seems worthless to live but there is always a reason to.If we all got together to push for more studies,maybe we would get rid of this horrible disease.
Chip Burdick <FTCDHoyt@aol.com>
Fulton, NY USA
Tuesday, December 15, 1998 at 18:11:55 (EST)

Thought I'd add my email...I left out that my "remission" lasted over 5 years (I'm 31 now).
Jim Kohler <jkohler@moscone.com>
USA
Monday, December 14, 1998 at 18:20:09 (EST)

I've had CHs beginning at a very early age (my mom says about 7 years old or so) after a bout of spinal menengitis (connection?). I went to a number of docs over the years and all said migrane or chronic sinus headache. No releif to the cycles - twice a year during late fall and spring. I tried antihistamines, perscription analgesics, etc. Home remedies like hot compresses, cold compresses, and hot & cold combo (works best for me). Anyway, they disappeared in my mid 20s only to recently reappear during Thanksgiving Weekend. I'm now living in the all to familiar anxiety of waiting for the pain - will I get a full nights sleep? Only correleation between the re-emergence of CHs is that I just recently quit smoking and drinking. Supposed to be the other way, right? I'm considering going back to my partying ways if it means these things will stop! Good to know that what I have is CHs and that there others out there! JK
Jim Kohler
Bay Area, CA USA
Monday, December 14, 1998 at 18:01:10 (EST)

I suffered from clusterheadaches for 18 years, the lest three of which were chronic. I finally submitted to surgery and had a Radio Frequency Lesion (RFL) performed at Mass. General Hospital in 1985. Since that procedure was conducted, I have had only three CHattacks in the past 13/14 years.
James E. Fenlason <FENLA1@aol.com>
Springfield, MA USA
Sunday, December 13, 1998 at 23:46:02 (EST)

having been on this sight before, i want to remind some of you sufferers there is hope. after having ch for 12 years, the last two chronic i finally took my neurologists advise. he is also a ch sufferer himself. i went to a sleep clinic. i didn't think anything was wrong with my sleeping habits, but there was. i have been using a continious positive air pressure machine, or a (c.p.a.p.) as it is called. my headaches went away and havn't had one since. i no longer snoore, i am refreshed when awaking instead of beeing exausted as before. i have been free of these monsters since 1996. i would reccomend you to look into this as a possible solution. i no longer take veropamil, sansert, nasil spray, prednizone, imatrex, and all the other drugs so common to ch suffers. i'am 6'3" 290 lbs i still smoke and drink a lot of coffee, but no more booze. i feel like i am 30yrs. old again but i am 48. i hope this helps yall as it did me good luck
tony gillis <togil50@totcon.com>
deland, fl USA
Sunday, December 13, 1998 at 21:25:12 (EST)

I am a 51-year old male and have had CH's since 1983. It was chronic for 12 years until I moved from the East Coast to the Pacific NW. Then, they abruptly stopped for several months and returned only at short intervals (unfortunately I'm in one now). CH's occur both at night (usually starting about 90 minutes after falling asleep) and during the day. They are more common in the late afternoon and night. I am a very light drinker (more on that below) and a light to moderate smoker. My diet is pretty far ranging and not restricted in any way. My complexion is "ruddy". The pain is always on the right side and starts at a point near the juncture of the nose and the eye socket. The pain then radiates out to the eye, cheek, ear and, in the worst cases, into the teeth. Typical duration is 30 minutes, regardless of the severity. I had a graphic illustration of the path the pain follows one time during a visit to the dentist. I had just finished an attack and the dentist then gave me a shot of Novacaine. She then kind of gasped (not a good sound to hear from any doctor working on you) and asked me to look into the mirror. There was a thin white line radiating out from the side of my nose to my ear with a branch leading down to my upper jaw. She said it was the "5th cranial nerve" (I think this is what she said). Whatever it was, it definitely was the path the pain typically follows. Definite triggers are: alcohol, heat, flying (I travel a lot), lack of sleep and possibly stress (although I don't really tend to identify certain times as being more stressful than others). For the 12-year period of chronic occurrences, I hardly had anything to drink. When I did I began to notice that certain types of alcohol had a more pronounced affect than others. Beer, red wine and certain "impure" alcohols like gin would produce a CH very quickly and were to be avoided at all costs. Vodka and, strangely enough, Tequila could be taken in very small quantities without any real affect. By small quantities I mean 2 drinks max for a night. Hot stuffy rooms will bring a CH on quickly. However, a hot humid environment (like the tropics) actually seems to help somewhat. I think flying is a trigger because of the reduced pressure (and oxygen concentration). A lack of sleep seems to make me more susceptible; however, this may just be a case of the chicken and the egg. If I am in a cycle, I get a lot of CH's at night, so I sleep less. As I get more tired I get more headaches...and so on. I also believe that "positions" contribute to the occurrence of CH's. Laying down causes them (I believe that's why they are so common during sleep and why no one can lay down during one!); however, I also am more likely to get one if I recline back slightly in a sitting position (in a movie,theater, watching TV, etc.). Falling asleep in a recliner is the kiss of death! I can also only go to sleep in one position. This does not guarantee that I will not get a CH, but it does lessen the chance somewhat. If i try to sleep in any other position I will get one within 20 minutes. Once I have an attack, the only way to get some sleep is to sit upright alongside the bed (or a sofa, etc.) and lay my head down on the mattress. Again, position seems to be important. Oxygen proved to be one way to short-circuit a CH once it started. Unfortunately in WA State, you need a prescription for oxygen and then it only seems to be available in the big industrial-strength booster rocket sized bottles so I haven't used this recently. Toprol XL has had some limited success in breaking a cycle (usually within a week or so). I have had to develop some "tricks" to deal with CH's. When I have one I have found that "humming" seems to lessen the pain slightly and maybe even reduces the duration of the headache somewhat. By "humming" I mean that I try to find an audible tone that I hum softly through my nose, favoring the side that hurts. This seems to sooth the nerve somewhat; but it also acts almost like a focus point (not the right words, but I have never really put words to this before) that helps me cope with the pain. I have to hunt to find the right tone and volume, but it does seem to help me (and usually embarrasses my wife in public places). Also, cold air definitely helps-the colder the better. This usually means high velocity air from the AC in the car. I'm not sure if it is just the cold air taken into the nostril or also the cooling effect on the surface of the skin. I have just returned from a two-week business trip to Europe. The combination of airplanes, time changes and all of the attendant problems associated with travel brought on a major attack (resulting in commandeering the bathroom on the plane for about 3 hours-fortunately it was a big plane with lots of bathrooms and an understanding flight crew).I am a 51-year old male and have had CH's since 1983. It was chronic for 12 years until I moved from the East Coast to the Pacific NW. Then, they abruptly stopped for several months and returned only at short intervals (unfortunately I'm in one now). CH's occur both at night (usually starting about 90 minutes after falling asleep) and during the day. They are more common in the late afternoon and night. I am a very light drinker (more on that below) and a light to moderate smoker. My diet is pretty far ranging and not restricted in any way. My complexion is "ruddy". The pain is always on the right side and starts at a point near the juncture of the nose and the eye socket. The pain then radiates out to the eye, cheek, ear and, in the worst cases, into the teeth. Typical duration is 30 minutes, regardless of the severity. I had a graphic illustration of the path the pain follows one time during a visit to the dentist. I had just finished an attack and the dentist then gave me a shot of Novacaine. She then kind of gasped (not a good sound to hear from any doctor working on you) and asked me to look into the mirror. There was a thin white line radiating out from the side of my nose to my ear with a branch leading down to my upper jaw. She said it was the "5th cranial nerve" (I think this is what she said). Whatever it was, it definitely was the path the pain typically follows. Definite triggers are: alcohol, heat, flying (I travel a lot), lack of sleep and possibly stress (although I don't really tend to identify certain times as being more stressful than others). For the 12-year period of chronic occurrences, I hardly had anything to drink. When I did I began to notice that certain types of alcohol had a more pronounced affect than others. Beer, red wine and certain "impure" alcohols like gin would produce a CH very quickly and were to be avoided at all costs. Vodka and, strangely enough, Tequila could be taken in very small quantities without any real affect. By small quantities I mean 2 drinks max for a night. Hot stuffy rooms will bring a CH on quickly. However, a hot humid environment (like the tropics) actually seems to help somewhat. I think flying is a trigger because of the reduced pressure (and oxygen concentration). A lack of sleep seems to make me more susceptible; however, this may just be a case of the chicken and the egg. If I am in a cycle, I get a lot of CH's at night, so I sleep less. As I get more tired I get more headaches...and so on. I also believe that "positions" contribute to the occurrence of CH's. Laying down causes them (I believe that's why they are so common during sleep and why no one can lay down during one!); however, I also am more likely to get one if I recline back slightly in a sitting position (in a movie,theater, watching TV, etc.). Falling asleep in a recliner is the kiss of death! I can also only go to sleep in one position. This does not guarantee that I will not get a CH, but it does lessen the chance somewhat. If i try to sleep in any other position I will get one within 20 minutes. Once I have an attack, the only way to get some sleep is to sit upright alongside the bed (or a sofa, etc.) and lay my head down on the mattress. Again, position seems to be important. Oxygen proved to be one way to short-circuit a CH once it started. Unfortunately in WA State, you need a prescription for oxygen and then it only seems to be available in the big industrial-strength booster rocket sized bottles so I haven't used this recently. Toprol XL has had some limited success in breaking a cycle (usually within a week or so). I have had to develop some "tricks" to deal with CH's. When I have one I have found that "humming" seems to lessen the pain slightly and maybe even reduces the duration of the headache somewhat. By "humming" I mean that I try to find an audible tone that I hum softly through my nose, favoring the side that hurts. This seems to sooth the nerve somewhat; but it also acts almost like a focus point (not the right words, but I have never really put words to this before) that helps me cope with the pain. I have to hunt to find the right tone and volume, but it does seem to help me (and usually embarrasses my wife in public places). Also, cold air definitely helps-the colder the better. This usually means high velocity air from the AC in the car. I'm not sure if it is just the cold air taken into the nostril or also the cooling effect on the surface of the skin. I have just returned from a two-week business trip to Europe. The combination of airplanes, time changes and all of the attendant problems associated with travel brought on a major attack (resulting in commandeering the bathroom on the plane for about 3 hours-fortunately it was a big plane with lots of bathrooms and an understanding flight crew). I would enjoy comparing notes, etc. with anyone out there. I can be reached at flyer7@aol.com.
R.S. Longerich <flyer7@aol.com>
Bellingham, WA USA
Sunday, December 13, 1998 at 12:16:54 (EST)

I hve been using Verapamil as a prophylactic treatment for 2 -3 years now and find that it works mostly. However I have been having attacks lasting for only 1 or 2 days which mean I cant start taking the pills. Does anyone else out there have these strange one off episodes as well? My neurologist in London is writing a paper on the effects of heat on CH sufferers, what do you feel? I know that I am more likely to have an attck if the room is too hot or if I cant get to any air. Even a hot bath can bring on an attack. Thank you for being there.
Marc Pollington <marc@dzd.co.uk>
london, uk
Saturday, December 12, 1998 at 18:40:21 (EST)

Thank you for somewhere I can say that I don't have a "headache", what we are suffering from is something other! I find it so hrad to explain to colleagues that when I turn up late looking as though I have been out on the town I've not slept due to unbelievable pain. How do we get our case across?
Marc Pollington <marc@dzd.co.uk>
London, UK
Saturday, December 12, 1998 at 18:21:47 (EST)

After going to Dr.'s and taking promethazine & Cafergot supposatories was barely enough to get me to the to the E.R. room.Then only to find a Dr. that wants to practice on you with Demorall or Morphine and your telling him they don't work only to find out to bad he is the Dr. to bad . One time a ER Dr. gave me a shot ASAP of compazine and within a half an hour I could feel my extream pain going down from a 10 to a 4 and I could live with the pain of 4 out of 10. I am glad I found this web site I am going check with my Dr. about some of these meds. It's been about 2 year since my last C.H. attack may be I can prevent one.
Larry Fabisch <fishn@jps.net>
Nice, Ca USA
Saturday, December 12, 1998 at 16:15:16 (EST)

I have suffered from cluster headaches for approximately 12 years. Need a cure!
Robert Copeland <dick.r.copeland.jr@lrno1.usace.army.mil>
Gallatin, Tn USA
Saturday, December 12, 1998 at 13:55:02 (EST)

Like many of you I have suffered with CH for many years and have actually known what they are for about 13 years. My attacks come every 18mos to 2yrs and they typically last up to 2 months. I have fairly successfully treated them with 20 mg Prednisone, twice daily but with each cluster, I have had to increase the length of time I take the Prednisone which I do not like at all due to the side effects and the long term negatives. I saw my family practice doctor yesterday to get my Prednisone prescription renewed and he wants me to see a Neurologist. He does not think I should be taking the Prednisone more than 7 to 10 days. Now the exciting thing! He gave me a couple of samples suggesting that if I got a headache while that I give it a try rather than the massive dose of pain medication. I started with a headache during last night (very early, 1 on a 1 to 10 scale) and as soon as I put the disintegrating tablet on my tounge, the headache reversed and never recurred! I am enthused enough that I will start today to wean off the prednisone (I've been on since Thanksgiving Day) and see what happens. The medicine I took is a Merck drug called Maxalt-MLT (Rizatriptan benzoate) 10mg. I know this is early in my experience but it was so amazing to totally avoid the 2-4hr excruciating pain, I just have to tell about it. My doctor also gave me samples of Zomig (Zolmitripan) by Zeneca which he said I could take 2 hours after the Maxalt for a longer term relief if needed. I didn't need it so I didn't take it. Hope this helps. I will keep you posted on how I do. Tom
Tom McAdams <tdmcadams@aol.com>
Savannah, GA USA
Saturday, December 12, 1998 at 11:26:57 (EST)

I have had cluster headaches for almost 10 years. I have lost almost everything because of this plague.
RONALD MARINO <MARINONET@IBM.NET>
CLEARWATER, FL USA
Saturday, December 12, 1998 at 01:43:46 (EST)

Please help ,i have bad head ackes for 30years .
Barbara A Dula <SDula@aol.com>
Lenoir, nc USA
Friday, December 11, 1998 at 19:49:48 (EST)

First a case history, then what has worked. 36 year old. Clusters for 10 years, about. It took me a while to notice the pattern, and I didn't learn the name till 1997 (TMJ, remnants of accidents, etc were suggested). Compared to most of you, I feel lucky - I get 2-4 hour peaks, once daily, 4-6 weeks a year, and I believe I don't get full strength always, as I have gotten some that where quite a lot of fun (the burning eye thing)to compare to. My daily time is 2-3AM, but this can swing to 9-10PM with alcohol triggers; my season used to be summer but swang to winter in 1996 due to home stress. In 1994 at the urging of a girlfriend who had to deal with them I tried acupuncture, going to a chinese medicine doctor in Boston's chinatown. He did the whole eastern thing with the five pulses, and then hooked me up with the needles, plugged in (electric acupuncture). 1/2 hour session. Then a sole-of the foot manipulation, herbal tea to drink twice daily, and return for sessions with the acupuncture every three days for two weeks. After the first night, I had 1 half strength attack and then they were GONE. 2 weeks into it. This was August 1994; in AUgust 1995 I had a 4 day series, half strength. Next was a full attack, but not until Dec 1996!. I'm in the middle of one now. I couldn't get to the old acu guy, and went to acupressure massage which got rid of them for 2 nights, and then I tried prednisone (just this last year did I discover the name of what I had and that there were western treatments besides the laughable ibuprofens) which after two days seems ok so far (last night I SLEPT). Hope this one more possibility helped someone - go try acupuncture!!!
Mike Rohan <mrohan@caprius.com>
Cambridge, MA USA
Friday, December 11, 1998 at 11:41:57 (EST)

I have been having these headachs for the past ten years. now. and using prednisone 30 to 40mg a day it works but when i try todecrease the dosage somtimes they come right back. I have tryed imatrex injections, its a quick fix it will stop the pain in about 5 to 10 min. I'am currently having the headachs now and been on prednison 30mg a day for the past 2 months. Help does any know of anything that works better.
jim marchi <marchi@balista.com>
harker heights, tx USA
Friday, December 11, 1998 at 09:56:21 (EST)

Until finding this site, I didn't realize it, but I am a "textbook" episodic CH victim. Mine have been in remission for almost 2 years until this week, and this group has given me new ammunition to go into this next battle. As much as the obvious physical pain ahead, I dread the baggage that accompanies these things. Insurance Companies, employers, Neuro's answering service, pharmacies, expense, hoping my wife hangs in there. Through education and understanding, maybe we can break down some of the barriers that keep us from finding the help we need. Maybe we could use our energy becoming pain free rather than navigating the medical system's red tape. Very comforting to find this group. Thanks.
Brian Jordan <brianman2@webtv.net>
Smyrna, Ga USA
Thursday, December 10, 1998 at 23:14:06 (EST)

Wow!! I'm new to the site, but not to CH. There seem to be hundreds of people going through the same problems that I have gone through. Great idea for a web site. I'm glad I found it. Will try to figure out how to chat next week. See ya.
Reece Bennett
USA
Thursday, December 10, 1998 at 21:48:36 (EST)

Hello all you troopers out there,and I mean troopers because I'm one of those too!!! I would like to say I have been diognosed as having "eposodic clusters".People when I have my eposodes they run in patterns of every 2 years(plus or minus 2months) and I get 3-4 attacks per. day,3-4 week period.Like many of you I was mis-diognosed for years,we tried oxygen,every calcium blocker out there.Then I found the greatist thing ever,the answer to my my prayers and it was "IMITREX" but I need to say not the nasal spray or the pills worked but the injections sure do(thank god for insurance)But may I add Iwas giving myself 3-4 shots a day and my family Dr. sent me to the Diamond Headache Clinic in Chicago, Guys I can't say enough for Dr.George Urban there,He introdused himself and then proceded to tell me he has the largest collection of "cluster"patients in the united states.For no longer I was in there this man made me fell more at ease about this very painful disorder and deffinetly more informed,he did frown on me about my usage of the Imitrex (its bad for the ticker if taken too much)so he told me to use it in moderation and also turned me on to Lidocaine nose drops(numming agent) and it works so I've got 2 choise now people I cant say enough for Dr.Urban the man new what was going he is a savior in my book.Yes it's nice to have a place to go to were we all can relate to each other.If anyone has been to see Dr. Urban E-mail me or write it on this page I would like to know if you had the same results.Good Luck Everyone!
Robert Downs <tvcjdowns@tigerpaw.com>
Paris, Il USA
Thursday, December 10, 1998 at 20:29:52 (EST)

I SUFFERED WITH CLUSTERS FOR OVER 20 YEARS,SPENT THOUSANDS,WENT TO DOZENS OF DOCTORS-5 MONTHS AGO A FRIEND GAVEME AND ARTICLE OFF THE NET THAT SAID 20 PEOPLE IN CALIF TRIED TAKING SUSTAINED RELEASE MELATONIN. IF FIXED ME IMMEDIATLEY AND AM FREE OF PILLS AND OXYGEN. $15.95 FOR 60 MELATONIN PILLS DID WHAT NOTHING ELSE COULD. SURE WOULD SUGGECT TRYING IT. MUST BE SUSTAINED RELEASE.
TYLER BERKLEY <TBERKLEY @sfmmortgage.com>
AZLE, TEXAS USA
Thursday, December 10, 1998 at 17:46:19 (EST)

Just a follow up on reading materials. Try Cluster Headache Syndrome by Ottar Sjaastad. Best I've read. There is research on just about every drug ever used to treat our condition. Check out page 177 and 134 and read about sleep apnea. Very interesting.
Reece
USA
Thursday, December 10, 1998 at 12:58:48 (EST)

Hey Everybody, I've had CH's for 15 years. The first 5 yrs were the worst HELL you can imagine. I am glad to find this site. Sometimes you feel all alone and no one understands. Thanks!!
Scott Clark <clark1007@aol.com>
Midland, TX USA
Thursday, December 10, 1998 at 01:03:52 (EST)

After 5 weeks of hell I went to a doctor who told me I have cluster headaches. Has anybody ever just had one oubreak of these headaches and they went away. If so, I want to know what changes that person made in their diet or lifestyle that made this happen.
R.L.R <T11310@aol.com>
Rockwall, Tx USA
Wednesday, December 09, 1998 at 20:55:50 (EST)

I have been inventing new cuss words over the last 5 weeks because of the pain I have been suffering from. I found out yesterday what it is called and have been reading everything I can get my hands on about cluster headaches. I cannot live the rest of my life like this. Some how I am going to find a way to beat this. I feel so sorry for all of the people who have had to suffer through this for so long. I just think there has to be a reason and I am going to fight to find it.
R.L.R. <T11310@aol.com>
rockwall, tx USA
Wednesday, December 09, 1998 at 20:38:35 (EST)

Well I started experiencing CHRONIC Cluster Headache in 1975, a little before the idea of a web site. I would experience indescribable pain in and around the eye, nose and temple. My doctor (Neurologist) just happened to guess right and made a proper diagnosis. I have been to the Houston Headache Clinic with Dr. Ninan Mattews, Biofeedback, and every other experimental treatment in the book. Nothing worked for very long. My biggest problem was conveying the magnitude of the pain to someone who does not suffer from them, (Father) who would suggest that I take an aspirin and get back to work. Very difficult to hold a job while having a CH!! Like I said mine were chronic so I had them every day, 5-8 times a day for years. Tried every medication known to a pharmacy. Finally got relief, which in my case was a break from and set up of a typical "cluster" pattern with a period of headaches and a period of no headache. If you suffer from chronic clusters, ask your doctor for nose drops and try Verapamil. I have finally gotten to enjoy some of the days during the year. Now, 23 years and maybe 20,000 headaches later I can honestly say that it does get better with age. Each year I have fewer and fewer. Hang in there!
Reece Bennett
Lafayette, La USA
Wednesday, December 09, 1998 at 16:28:56 (EST)

What a relief to find this site! Kudos to the folks who put this together. After reading the symptoms I felt a certain affirmation that I am not alone with this demon. Welcome to the club although I'm not sure where I signed up for this. For many years I was misdiagnosed and only recently have I discovered what this is. When I read about some of you and your experiences I cried knowing what you are going through because I have been there myself. Hang in there. Anyway, I am always reesearching trying to figure this out. My Doc has me on Midrin with marginal results and I am currently having some success with ice. My thought it to cool that region of my head enough so that I will reduce circulation. Part of it could be trading pain for pain I'm not sure. Has anyone else tried this? I am looking forward to treatment and a cure with this group effort. Bless You!
Bill Benson <bbenson@sc.younglife.org>
Colo Spgs, CO USA
Wednesday, December 09, 1998 at 16:03:55 (EST)

I'm 34 and I have had Clusters for 18 years now. Of course, I was not diagnosed correctly for many years. I had been to every eye doctor, family doctor and ear, nose and throat doctor around. Finally a doctor of internal medicine got it right. I have tried many medications, and oxygen, each with moderate success, but nothing consistant. The day they made imitrex was a great day!! An injection will get rid of my headache in 5 to 10 minutes. Unfortunately, it can be harmful to your circulatory system so I can't take it as often as I need with these headaches. Two hours later I may get another then I'm doomed. I found that over the years my Clusters increased in frequency and duration. What used to last 20 min. can now last 3 hours. The pressure begins like a sinus headache behind my left eye. When this happens I get that "sinking" feeling, "Oh, God, here it comes". I sit up, I breath deep, I pray that it just some sinus pressure, but I know what it is. I begin lightly touching the left side of my nose, or gently rubbing my cheekbone, but quickly turn to squeezing my temple and pushing on my eye socket as hard as I possibly can. I am looking for relief in any way possible! Of course nothing works, I've been through it hundreds of times, I know it will not help. I just sit and cry and sometimes when the pain is at its peak I get nauseous and vomit. Luckily, because I continue to try different medications and treatments, I don't have to endure these types of episodes as often, but it still happens several times each session. One year since I've lived here in Georgia, I did not have any headaches. I usually get them in January here in Atlanta, but I've just started another session and it is December this time. I'm afraid to go to sleep now. I have to sleep sitting up. I don't know why, but it really seems to help. Of course, I don't get much sleep that way. It is really great having this web site of people who understand. I talk to very few who do. I try to tell people, but I get comments like, "yeah I know what you mean, cause I got this headache from watching to much TV once, and wow, it was bad!" That's when I give up.
Darin Rasberry <darin-r@msn.com>
Marietta, Ga. USA
Wednesday, December 09, 1998 at 01:27:51 (EST)

Can't stand the pain!!!!!!!!
Linn W Mosley Sr. <Babywhoopi@aol.com>
Harrisburg, Pa USA
Tuesday, December 08, 1998 at 22:16:12 (EST)

I have been a Chronic CH for nearly 6 years, and finally i can see a solution in sight. I just watched TV with all the hype about Human cloning. Stuff the idea of growing new bodies for old heads, just grow me a new head !!!!! In hope of a cure one day.......
M.P.Poynter <jt13@dial.pipex.com>
Stockport, England
Tuesday, December 08, 1998 at 19:15:41 (EST)

Hi - I have suffered from chronic cluster headaches since I was 16 - Im now 33. However, in the last two years they have been much better since I started taking Feverfew every day, extra Calcium, Zinc and Magnesium and have been using a thing called Acupoint which works on the same principles as acupuncture. Im not sure if its coincidence or which one of all these things is helping me but I just continue to use them all anyway. For the first time in all those years I dont have to deal with the terrible pain every day or so but havent forgotten what it feels like and occassionally get a big reminder. This is a great site and I can see how much its appreciated by everyone who suffers from this curse. Nobody else can ever really know what it feels like. Keep it going!
Greg Stringer <STRINGER_GREG@westminster.cfe.ac.uk>
London, England
Tuesday, December 08, 1998 at 13:45:53 (EST)

I highly appreciate your work and dedication to help sufferers from this terrible, damned and unbearable headache by providing valuable information that help in overcoming the suffering. For me, I appreciate most of all because most of the doctors tried to cure me were almost ignorant of this type of headache. This destryed my morale and caused me to think that I am suffering from a fatal desease that will put an end to my life in every bout I undergo. Thank you agin...... N.b: Blessed be your efforts and committment to provide the best infromation to the sufferers!
AbdulRahim Al-Hasan <tworld@palnet.com>
Ramallah, Palestine
Tuesday, December 08, 1998 at 07:36:42 (EST)

Thanks to whoever was responsible for setting up this facility. As a newcomer to the internet, I am still learning about message boards and mailing lists and am so relieved to have found this site. I have been suffering with CH for 18 years, with regular occurences every couple of months each lasting about four weeks, except for the last three years when I had a break of twelve months followed by a bad patch which was continuous for about six months, then latterly a break from July 1997 until last week, when a slightly different pattern has struck up. The pain, although not as severe as normal has moved over to the opposite side, the right side of the head. I was thinking that maybe I had overcome the problem after so long. I am now a waterholic again - any alcohol at all whilst CH is skulling around triggers the attacks - that's Murphy's Law - just before Christmas! Prior to the break in July 1997, the local doctor prescribed a combination of tripiline and tegretol as a prophylactic with Migril (ergotomine/caffein) to handle any attacks. This treatment seems to have helped, even if not a total cure. I do find however that the Migril, although effective if taken early enough into an attack, does tend to cause a washed out feeling the following day. I would welcome any e-mail from fellow sufferers where we could perhaps swop notes.
Eric North <homested@eastcape.net>
Aberdeen, South Africa
Monday, December 07, 1998 at 13:28:43 (EST)

Hi, I'm Gene, 56 years and have had CH since my teens. In early years, the cluster lasted from one to two months and headaches every 24 hrs. About a decade ago they switched suddenly to 48 between headaches and the clusters sometimes lasted only two weeks. I'd like to tell others what has worked for me. Presently I am having a cluster after a two or three year hiatus. I should keep better records. We all should. Believe it or not, I have treated this cluster with coffee! Caffeine is a traditional remedy for vascular headaches like migrane and CH. If I get a cup of coffee fast enough, there is an excellent chance I can abort the headache before it gets really bad. As I see it there are two approaches to medication. Prophylactic (preventative) and immediate headache treatment. I have had no success with preventative treatments. They have strong side effects. Immediate treatments can be effective only in a very narrow time span. Once the headache is underway, nothing helps, including narcotic pain relief. Oral cafergot is worthless. It gets there way too late. The best thing I have ever used is ergotomine tartrate, trade names Ergomar and Ergostat. These very tiny pills are taken sublingually. You desolve them under your tongue and they are absorbed through mucus membrane. When I tried to get some a few years ago, I was told that they are no longer made by either supplier. Does anyone have any further info on this? There is a form of cafergot that works for me, however, (and I hope that it is still available). That is cafergot supositories. The pricipal is the same as the sub-ligual ergot. When taken rectally, the ergot and caffeine are rapidly absorbed through mucus membrane. Again you have to get it fast enough, but it works for me! I hope it can help someone else.
Gene Zumchak <zumchak@cerg.com>
Buffalo, NY USA
Monday, December 07, 1998 at 10:06:27 (EST)

Unfortunately they're back. I had my first headache today. It has been a year and a half since my last cycle. I feel fortunate that I only get one headache every other day, usually at the same time in the morning. My cycles usually last for about 6 to 8 weeks. I say "fortunate" because many of you get them so much more often. I am 32, and have suffered for more than 20 years with these damn things. Doctors in the 70's and 80's had absolutely no clue. Up until 1992, I never had an ounce of relief until I found a Neurologist who was developing a headache clinic. I was the first Cluster case he had studied. He introduced me to Cafergot. God bless the developer of that medicine. It has only been ineffective a couple of times. I have been wanting to try Imitrex since it was introduced, but I have had so much success with Cafergot, why mess with a good thing. Besides, the only way I can try Imitrex is to let a headache develop and have someone drive me to my doctor so they can observe the first injection. Call me a baby, but I am scared to death of a full blown headache. Please feel free to e-mail me with comments, suggestions or questions.
Joe Di Noto <JoeDiNoto@aol.com>
Alta Loma, CA USA
Monday, December 07, 1998 at 00:53:19 (EST)

My wife has had chronic cluster haedaches for six years. She has gone through all the meds with little relief. Now she is at a piont where she is loosing wieght at a rapid pace. The doctors don't know what to do. Need help.
rick <SPTR1@pop.prodigy.net>
tucson, az USA
Sunday, December 06, 1998 at 19:50:33 (EST)

T am a 59 yr. old male who had CH's from late 70's thru early 90's. Now I am having them again after surviving lung cancer for four years
Jerry Reaser <jlreaser@parlorcity.com>
Petroleum, IN USA
Sunday, December 06, 1998 at 09:13:56 (EST)

Hi all! I am a 30 yr. old female sufferer. I was diagnosed with cluters when I was 17. My father had them for about 40 years (God help us all). I've gone years of not having headaches, and then seven years ago, when I was pregnant with my daughter, they started back. I have been misdiagnosed with having chronic rhinitis and sinusitis too many times to count. This past February, the headaches started again. The doctor said, 'You have migraines' and prescribed Midrin. Midrin does not work for me--I might as well pop Pez candies. For the past three weeks, I've been going through my latest cycle. Yesterday was absolutely the worst one that I've ever had. It started at 11 a.m. and just ended about 3 1/2 hours ago. I cannot even begin to describe the pain and nasea. This time, the doctor prescribed Fiortal. I do not want to have to spend the rest of my life taking barbituates. I can't seem to get the doctors to understand my pain. They keep giving me Midrin, and then look at me as if I'm crazy when I say it does nothing for me. My dad is the only other person that I've talked to that understands my pain. I am so glad to have a forum like this. It's good to be able to vent once in awhile.
Elaine Pollard <lainey68@hotmail.com>
Waldorf, MD USA
Sunday, December 06, 1998 at 05:25:31 (EST)

My husband suffers from cluster headaches, has for almost 20 years. Hoping some day there is cure!
Debra Saul <saul.hollinet.com>
Hollister, Ca. USA
Saturday, December 05, 1998 at 12:19:07 (EST)

Just found this website...sorry to say I can't chat due to the fact that I have webtv.! If anyone would like to chat via e-mail....please contact me. I'm a 33/F and I've suffered from clusters for about 10 years, havent found any med.'s that help yet and I'm always looking into new info. If you'd like to correspond by e-mail...I would love to hear from you! :)
Shellie Masini <shelliemasini@hotmail.com>
mesa, az USA
Saturday, December 05, 1998 at 08:23:32 (EST)

I'm a 35 year-old man who have been suffering from CH (or "Horton's headache" as we call it in my country) since I was nineteen. A cluster comes every year, or sometimes every second year, usually in the early spring. Right now however I atypically experience a period in autumn-winter. Clusters last from two to six weeks, unfortunately they tend to get longer and longer. During a cluster I get up to six attacks per 24 hours, each attack lasting about two hours. The first time I -- then a sensitive and sometimes lonely teenager -- had CH, I remember trying to prepare myself for dying of the brain-tumour I clearly felt in my head. It took several years for me to get the correct diagnosis, even though I visited a few doctors. Eventually, my mother found an article on the illness in an ordinary womens-magazine. After that I contacted a neurologist who gave me Imigran (sumatriptan). To me, it was a great relief. Four minutes after I inject it in my leg, the pain is gone. The first time it felt like a miracle. Before that, I had only popped pain-killers, sometime -- in desperation -- combined with whiskey, to little positive effect. The problem for me with sumatriptan is the risk of overdosation. I'm adviced not to take it more than once or, if needed, twice a day and that is not enough. People die early of heart failure in my family, and I cannot ignore the risks. This time around, I've also tried Sandomigran (Pizotifen). It clearly diminishes the streangth of the attacks, making them more like "normal headache". The trade-off is that I get very tired from it. But of course, that is a prize I'm willing to pay, if it is necessary. The effect of a full-scale, unmedicated CH-attack is -- as readers here well know -- something quite out of the ordinary. When I was younger I used two bang my head repeatedly in the wall. Sometimes I also tried standing on my head for about half an hour. It didn't help, of course. Nowadays I try to resist the urge to move around, sit absolutely still, and try to employ some sort of selfhypnosis. If you are alone in a room with the devil, you might just as well look him in his face. Medicaments have been a great help to me, but still -- a few weeks into a period -- I'm not a very happy guy. A lovely wife and three wonderful kids, a nice house and a great life in almost every way doesn't help much. My sympathy with you who suffer chronical CH is endless. In a month, I'm probably as healthy and happy as anyone could be, while you have to struggle on.
Jonas Klingberg <jonas@klingberg.se>
Stockholm, Sweden
Saturday, December 05, 1998 at 08:10:44 (EST)

I am a 40 year old male who is in his 2nd. week of CH. I have been to the E.R. 5 times in the past week and one half, and the other times to my G.P. I have tried all the migrain meds and to no avail! The only way I seem to get any relief is to get a shot of 100mg demoral and 50mg of phenergan. I have tried oral demoral and phenergan , but the problem is it takes so long for the pills to work I usually throw them up before I can get releif. The other problem is I very seldom get these headaches when I am awake and therefore I can't control them with the pills. I have suffered with this nightmare for twelve years now. I have been to two headache clinics, one here in Ohio and one in Michigan. But have yet to find any combination of medicines that work for me. My cycles are anywhere from 3 to 8 weeks long. Usually in the early winter or sometimes early spring. I have had periods of remission as long as 24 months and as short as 6 months. There is no way to describe to a non-sufferer how excuciating the pain is that we with CH have to go through! Thak God for this website and for the few doctors that really try to understand, rather than tell you to take two aspirin and go to bed. My wife ,who has been a rock of support through this maladay, ask why they could not make a home injectable of the demoral and phenergan as they do with the imitrex, so she could give it to me instead of having to go to the E.R. and maybe suffer for 1 to 2 hours before they get a hold of my Dr. to order the medicine. This would not only save on the time that one would have to suffer, but also on those expensive E.R. bills that really start to add up! I realize that with demoral,we are dealing with a narcotic, and the medical community must be very cautious with the dispensing of this drug. But I think that my records from the last twelve years of dealing with these headaches prove that I am in no way an abuser of this drug. If anyone out there has ever heard of this treatment being prescribed for home use, please write back to this forum, as I currently have no e-mail address, so this is my only source of information! Thank you, and good luck to the rest of you out there who understand what I am going through. There is some comfort in the knowing that I don't struggle alone.
John W. Miller JR. <N/A>
Lima, OH USA
Friday, December 04, 1998 at 22:03:36 (EST)

first episode was july 1997, every evening. it is now Nov. 98 and they have started up again. every nite at eight. two vikiden offer little help.
Loren Rasmussen <sofaguy@aol.com>
Powell Butte, OR USA
Friday, December 04, 1998 at 20:35:47 (EST)

Male, 42, white, Chronic CH Headaches occur every ~3 hours with clockwork precision. They started 10 months ago, apparently after a root canal. Other possible sources include a shoulder/neck injury. Sometimes awaken at night, but usually not with bad pain. Some attacks are worse (usally towards evening), but as bad as they are, it sounds like mine are not as horrible as some (episodic) sufferers seem to describe. I have been headache free for a couple weeks now due to meds: My doc started me on 360mg Verapamil. This weakened some attacks. He up'd it to 480 which helped a bit more. He then added Lithium, 900mg. Over a period of a couple weeks, I am mostly pain free. Still have some milder shadow pain. My diagnosis was a 7 month drag. Because it started right after a root canal, I first went to a string of dentists/ oral surgeons/tmj docs/physical therapist for tmj. They all gave up - sent me to a 'pain management' outfit. The doc (anaesthesiologist) immed. diagn me as having 'occipital neuralgia' and proceded to charge me big$ for nerve blocks which did nothing. My GP doc had referred me to a neurologist way back in the early summer BUT their waiting list was over 2 months!!! After 1.5 months, he canceled and rescheduled.. Finally saw him and he quickly Id'd chronic CH. So, I'm much better. The lithium is kinda nasty stuff. I swear I had a toxic overdose the first couple weeks. It seems to decrease my memory/mental accuity. Was making me very dizzy. Makes my hands shake like crazy. But it sure beats the HELL of CHs. Best of luck to you all. Thanks for sharing. Thanks to the owner of this site!!!!! -bobt (gollum)
bobt <clheadache@aol.com>
austin, tx USA
Friday, December 04, 1998 at 11:23:40 (EST)

Guilherme Simões de Moraes <babu@uol.com.br>
São Paulo, SP Brazil
Friday, December 04, 1998 at 08:04:55 (EST)

C/H what a horrible thing to have. I have suffered for about twenty years with the nightmare of clusters.I's been about sixteen months since my last cycle. my last cycle was during my wedding and honeymoon we went to Jamaica great place to get headaches. As I sit here typing in the guestbook I feel the warning signs of there back, helpless to do anything I wait till it happens,ready to call my doctor for the Imetrix waiting hoping that it may not come. As with many of you I have tried what I think is everthing, but nothing helps except the passage of time. I have also heard that with age they will go away I'm 41 hoping my time has come. May God help us all.
tony <chalhoub@prairie.lakes.com>
USA
Thursday, December 03, 1998 at 21:33:30 (EST)

My brother has suffered with CH since he was 17. He is 41 now. My God, what hell you all go through. I pray for you all and for your families. While you are going through this agony, we are suffering too, because we are so helpless. It is so hard to watch someone you love so much suffer this awful pain. My brother was helped tremendously by Dr. Seymour Diamond at the Diamond Headache Clinic in Chicago. We recommend Dr. Diamond so highly. We hope and pray for an end to all suffering. God bless you all.
ree
USA
Thursday, December 03, 1998 at 18:14:26 (EST)

I have been suffering for 27 years (since I was 10 years old). From what I've read, there is no cure, but any suggestions for relief anyone has, please let me know. Thanks, Betsy
Betsy Gabelt <sgabelt@neo.rr.com>
Alliance, OH USA
Thursday, December 03, 1998 at 13:18:41 (EST)

I am a new person in the world of suffers and have just recently learned what it was that I was suffering from. I have been getting these headaches now for about two years but it meant nothing to me until recently when I endured one that put me out of commision it hurt so bad. The strange thing about my situation is my age I am only 21 and have been suffering for two years, with them getting progressively worse. I was happy to find this home on the net to be able to learn more about my ailment. God speed to us all
Travis Smith <sherrodtrav@hotmail.com>
Mesa, AZ USA
Thursday, December 03, 1998 at 12:35:04 (EST)

Hello, fellow CH sufferers. I have been having these jokers since I was 27 years old. I'm now 53. My neurologist told me most people outgrow these by the time they're 45 or so. Que pasa??? Anyway, they occur every year and a half or so. This time, they were a few months overdue and I thought, Jeez, maybe they're gone for good! No such luck. I wasn't formerly diagnosed with CH's until about 3 years ago, but I was 99 44/100 percent sure, from what I had read over the years about headaches, that this was what I had. The only drug that truly helps me is Imitrex. The injections are wonderful and act very quickly, but the pills seem to be a little cheaper in the long run (I don't have insurance). I have been experimenting for the last couple of weeks with the new Excedrin for Migraine, and I have found that they seem (note, I said SEEM) to be somewhat effective if I take them at the first sign of pain. (Should I receive a royalty for this plug??) Also, I have found coffee to be of some benefit if taken in the early stages. Anyhow, as soon as my CH starts to really blossom, forget it. The only thing that can touch it is Imitrex (Again, shouldn't I receive some sort of royalty?) This bout started about 3 weeks ago, so I have approximately another 3 months to go. Fun is. Good luck to everyone.
Jerry <jmed@msn.com>
San Antonio, TX USA
Thursday, December 03, 1998 at 08:24:18 (EST)

Greetings, Fellow Cluster Sufferers; I'm 45 and have been suffering from clusters since I was about 25. I didn't know until about 5 years ago that I was having cluster headaches; all that time I thought maybe I had a pinched nerve or something in my back. My clusters usually occur for about a 3 month period in the fall of the year, with attacks lasting anywhere from 15 minutes to about an hour with an average of 8 headaches in a 24-hour period. I discovered quite by accident that for the milder attacks, a 50mg dose of diphenhydramine (Benadryl)aborts future attacks. Later, after I was finally diagnosed properly, a physician put me on 40mg of Prozac a day which has virtually eliminated the headaches. When, on rare occasions, I do have a breakthrough, Imatrex is good for ending the cycle. I hope this is of some value to someone out there. I don't know what a cluster headache rates on the McGill Pain Index, but it's gotta be high so I hope my experience is of some help. God bless and hang in there! Steve Holderby
Steve Holderby <zooby@gj.net>
Grand Junction, CO USA
Wednesday, December 02, 1998 at 13:02:38 (EST)

I've suffered fron C/H for about 25 years now, the most effective treatment I've found are Imigran injections, they'll abort an attack in 15 minutes. Unfortunately, as the cluster extends (11 weeks last time) the effectiveness reduces after around six weeks but still works better than most things. The main problem here in the UK is getting an understanding GP to prescribe enough at a time because they are so expensive. So far I've managed 18 on one prescription (probably a world record.!)
Jim Scott. <tmi@cyberphile.co.uk>
Birmingham,, UK
Wednesday, December 02, 1998 at 09:04:18 (EST)

I have been a CH sufferer for over 14 years. I am 37 now and am in a cluster now that has continued much longer than usual. It's been about ten weeks now. I went through the first 9 years of headaches with no treatment at all. I was in the Navy and they simply gave me tylenol and sent me back to work. Finally after nine years of clusters which ran a pattern of lasting 6 weeks followed by 6 weeks of remission like clockwork, I found a supervisor that suffered from migraines and he got me to a neurologist that quickly diagnosed my problem and tried several treatments which gave me little relief but did seem to break the cycle. After 11 years of headaches and suffering I went to my family physician in my home town while home on leave for treatment when a cluster had begun. I hadn't seen him since the clusters had started. To my surprise I found that he was a cluster sufferer and was very sympathetic of my situation. We have tried a combination of verelan, caffergot and naproxen and found that this works quite well for me. We usually have to change the dosage and times taken around every couple of weeks for some reason. This doesn't get rid of them but it does help and they seem to be less severe. Without treatment I usually have 4 or 5 at night and 2 or 3 during the day. With this treatment I have maybe 1 at night and 1 during the day and oxygen works very well for relief. Since this cluster has gone on longer than any other I have had we are now trying lithium to see how I do with it. Good luck to everyone and God Bless.
Jeff Washburn <southernsupplyco@mindspring.com>
Valley, AL USA
Tuesday, December 01, 1998 at 08:36:07 (EST)

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