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guest book

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

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

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


I feel like I've found a home! I've spent night after night over the years up with CH searching the net for hope and answers. It was the loneliest and most painful feeling in the world. At age 47, it's been about 12 years for me. Most of that time masked and misdiagnosed as sinus related problems. Last four years attacked as CH, thanks to a visit to a neuro and a wonderful GP who is willing to learn and try as I do. Reading all the posts brought back so many memories of wanting to die, fearing my head would explode, fearing to try and sleep after nights became weeks of sleeplessnes. Those lonely walks down the stairs away from my sleeping family (one daughter and my wife who is seriously disabled with Multiple Sclerosis) to wrestle the demon at levels of pain I never thought immaginable. Currently taking Zomig 2.5mg for pain (regretfully like Imitrex can't be used until after headache begins). Coupled with Propoxy-N/APAP 100-650, I can usually get them under control between 20-40 minutes. I take one Propoxy tab at bedtime - however CH usually strike about an hour after I try to sleep. For the last year I've been trying an herbal treatment of FeverFew 900mg daily. As I had no attacks I hoped it was working. Current cluster is not as high on pain scale as past so maybe it is worth something. After reading so many posts about Verapamil I opened my old bottle and took one (240 mg). It didn't impress me last time around, but I'll give it another chance. Feel free to Email - we are family! Patrick
Patrick Leer <>
College Park, MD USA
Sunday, November 29, 1998 at 04:35:38 (EST)

I have headaches-I don't know if they are migranes or cluster-but just wanted to let you know that I need information on these headaches.
joronda crow <>
denton, tx USA
Friday, November 27, 1998 at 23:56:24 (EST)

Juat found this page...will do more research..but, I think I have found the answer to my headache type! I've been having 'knife-like' pain about 10 times per day in my temple for the past 2 weeks! Thought maybe I have a tumor of something horrible! Will continue researching...but, I may be one of you!!!
Kathie Allen <>
Lewis Center, Oh USA
Friday, November 27, 1998 at 19:34:55 (EST)

I have yet to find any medication that helps with my cluster headaches! I have been through more medications than I can recall. The only thing that gives me any relief is a shot of demoral and phenergan. My cycle has just started again, and it leaves me in fear of going to bed. I have had four acute attacks in the last five days. One of the most frustrating things in all of this is the number of doctors who don't understand! If I have to go to the ER,or other providers,rather then my family doctor.I just can't get them to treat me right away.They always want to try the same things that have not worked in the past! So I have to suffer until they finally give me the shots.Has anyone else been through this same ordeal?
John Miller JR.
Lima, OH USA
Friday, November 27, 1998 at 04:37:30 (EST)

I am trying to find out some information on cluster headaches for my brother who suffers from them badly
mary ryan <>
prince rupert, b.c, canada
Friday, November 27, 1998 at 01:40:57 (EST)

Hello, I'm a 39yr old male that has been suffering with cluster headaches for 10yrs now,Although they seem to only come every other year and last for about 1 month I would still like to hear about any new meds or techniques to rid myself of these painfull things.
Bryan <>
Okc, Ok USA
Thursday, November 26, 1998 at 09:26:51 (EST)

Hi. I'm 39 yrs old and have been suffering from CH for the past 18 yrs. I can relate to all of you with the pain and the cycles. I have been 3 yrs without a cycle until this year. I recently found a new doctor who had experience with CH and was RX imitrex injections. So far it has worked 5 out of 5. I went through the same RX as most of you, and was told by a previous dr in 1991 that the imitrex would not work for CH but only for migraines. I had given up hope of there being any other help until my wife brought home information and bios from this website. It is nice to have a place to relate to others with CH.
ELloyd <>
Scottsboro, AL USA
Wednesday, November 25, 1998 at 18:56:35 (EST)

Wednesday, November 25, 1998 at 18:27:13 (EST)

My brother John was diagnosed with cluster headaches at the age of 19, in 1974. He has been told that he is a cluster headache variant,as his headaches sometimes last as long as fourteen hours at a time. My family feared for his life many times, we were sure that he would commit suicide, the pain was just so intense. It is very hard for a family to stand by and watch someone they love go through such agony. We felt so helpless. We tried every doctor in Philadelphia and New Jersey, every drug that came down the pike, all to no avail. Finally, we found Dr. Seymour Diamond in Chicago. That man saved my brother's life. We recommend him so highly to anyone who is suffering the same agony. I think my brother is alive because of the wonderful treatment that he received at The Diamond Headache Clinic in Chicago. My brother still has headaches, but it seems that the intervals between cycles is getting longer and longer. His last cycle was just over three years ago, when our father died. He even went almost five years without a headache at one point in time. His last attack, three years ago was not as severe as other times. We were encouraged by this also. May God bless all of you and your families too, because as I said before it is very hard for families of cluster patients too.
Ree Callen <don't have one yet>
Philadelphia, PA USA
Wednesday, November 25, 1998 at 17:03:56 (EST)

Well hi all I feel like a strange duck here. I am suffering on C/H for more then 15 years. And again i am in cycle. Atlast i am happy that i found this site on the net. Are there other ducht speaking ppl here ? (Belgium or Netherlands ?) I wanna share my feelings and pains.. And for all of you and myself.. i hope one day they will find a solution for our problem. Greetings
Declerck Erwin <>
Ghent, Belgium
Wednesday, November 25, 1998 at 11:33:28 (EST)

Male - 57 years old ... Started having cluster headaches in 1970 at the age of 29 ... lived in Santa Barbara at the time ... treated by family doctor ... we both called them migraines at the time because they roughly fit the pattern ... no info at that time re clusters ... finally identified as clusters in 1980 ... have used various treatments over time including cafergot, inderol, demerol, imitrex, and some I've long forgotten ... moved to Eugene, Oregon in 1987 ... treatment continued with inderol and imitrex for prevention and demerol tablets/shots for pain ... referred to pain management specialist in 1996 because of heavy use of demerol ... tried physical therapy and some beta blockers ... moderate success ... finally, with supporting diagnosis from a neurologist, decided I qualified for chronic pain treatment and I went on Methadone; yes, the same stuff they use for heroin addicts ... take 5mg tablets 5 times daily ... no headaches, or even twinges, since then ... in my opinion, a lifesaver ... finally after over 25 years I now have my qualify of life back ... I know the rest of you sufferers know exactly what I mean ... I recommend finding someone who will let you try the Methadone treatment route ... it's actually stronger than Demerol but doesn't have the long-term disadvantages, i.e. I can take it the rest of my life if need be ... a miracle!
Rich <>
Eugene, OR USA
Tuesday, November 24, 1998 at 17:36:48 (EST)

I have been suffering from clusters for about 25 years now. I have tried everything from cafergot to prednisone to midrin and everything in between. The best relief I receive is from oxygen. I can usually get rid of the pain in about 15 to30 min. @ seven litres. It is really a Godsend. This is my first attack in about four years. It is not as intense as some of my previous attacks so hopefully on the downside of the age cycle shown in one of the graphs in the info provided on this sight. I am 45 and my most painful episodes have been in my late 20's and 30's. So for all you young sufferers, hang in there. Gotta go
Rod Saunders <rksdugout>
San Diego, CA USA
Tuesday, November 24, 1998 at 17:13:09 (EST)

I have been suffering from clusters for about 25 years now. I have tried everything from cafergot to prednisone to midrin and everything in between. The best relief I receive is from oxygen. I can usually get rid of the pain in about 15 to30 min. @ seven litres. It is really a Godsend. This is my first attack in about four years. It is not as intense as some of my previous attacks so hopefully on the downside of the age cycle shown in one of the graphs in the info provided on this sight. I am 45 and my most painful episodes have been in my late 20's and 30's. So for all you young sufferers, hang in there. Gotta go
Rod Saunders
Tuesday, November 24, 1998 at 17:11:38 (EST)

Hi! I am a 34 year old that was diagnosed with migraines at age 8. In the past year, I have also been getting cluster headaches and I cannot find much info.I would very much like to get as much input as possible from other people.THANKS! My friends address is TSSA
Susan <I don,t have one yet>
Lawrenceville, IL USA
Tuesday, November 24, 1998 at 16:58:58 (EST)

Hi! I am a 34 year old that was diagnosed with migraines at age 8. In the past year, I have also been getting cluster headaches and I cannot find much info.I would very much like to get as much input as possible from other people.THANKS! My friends address is TSSA
Susan <I don,t have one yet>
Lawrenceville, IL USA
Tuesday, November 24, 1998 at 16:55:17 (EST)

I have suffered with misdiagnosed "headaches" for 18 years and spent thousands of dollars looking for answers. Even went through four years of mouthpieces and braces to realign a "TMJ" problem. With, of course, no results. Thanks to your web page, I finally discovered that I am not the only one with these symptoms. Although at times, I too have suffered very deep depression, and felt I would never find the answers to my problem, your information has given me new hope. I thought I suffered from some rare disorder that Doctor's had no clue how to treat or what the cause. Thanks for giving me hope. I am seeing a new Doctor now, and although am just getting over a "spell" of headaches, it has been one of the mildest I have experienced in years. To all you other sufferers, don't give up! I have often felt I was out of options and would reach a point where the pain would become too much to endure, and giving up was the only option. There is hope!!!!! Thanks to you all for putting together all this wonderful information, it has helped me more than you will ever know.
Lauri McPhearson <EXTRACATE@AOL.COM>
Richmond, VA USA
Monday, November 23, 1998 at 22:50:25 (EST)

I'm a 19 year old college student and have had cluster headaches for eleven years. I am not a heavy drinker and I don't smoke. I was treted for migraines for over eight years and I havn't found a drug that works for me yet! These headaches interfere with work and schoo. Its really nice to have finally found a group of people who can relate. If you have any suggestions please email me. Thanks.
Denise Shivar <DDSHIVAR@AOL.COM>
Wilmington, NC USA
Monday, November 23, 1998 at 15:55:53 (EST)

This page does represent a type of relief for us all from the pure agony of cluster headaches, in that we can at least share the experience, if not the pain. I regularly take the prescription drug 'Cafergot' (combination of caffeine and ergotamine) which works well for me. Have any of you out there moved on from Cafergot to anything you feel is more quickly effective? I'd love to know. Welcome any comments.
Tom Fraser <>
London, UK
Monday, November 23, 1998 at 11:12:11 (EST)

What can I say but thank you. I have had cluster headaches for about 10 years, and due to allergies to different pain killers have thought I just had to learn to live wiht them but this week the doctor finally saw first hand how I suffered and gave me zomig (only in canada about 2 mths) and predisone (I also have asthma). What a relief, it cleared up within 2 hours. I can't remember when I have felt this good. Keep up the great work.
Carolyn Paterson <>
Niagara Falls, ON Canada
Sunday, November 22, 1998 at 18:39:05 (EST)

Dear Members of the Cluster Clan: After having found this web site I came to realize that I am not alone with this problem, which I have had for nearly 8 years. And what I have also noticed from reading all the horror stories is that Cluster Headaches (CH) are definitely part of a scheduled event. Now please notice that I am not using the term 'cycle, or 'circadian'. Like everyone else, I simply assumed that something in me is screwed up, and by some medical standards my thinking as well as my biological functioning. What I have come to realize is that the CH is very similar to playing a game of chess with a computer. After a short period of time the computer predicts your moves and develops a counter strategy. Ultimately, you lose the game because the computer has unlimited capacity for memory and you do not. A very similar pattern seems to occur in all the treatment and prevention approaches for CH. Something is tried, it seems to work and then when you think you are winning, it creeps back in and you are back to square one. It makes me wonder if our concept of what we are dealing with may have something to do with the outcome. Clearly, the cluster is a scheduled event, but what it is not, is a headache. I know what a headache feels like and so do you. What we call a cluster is nothing like a headache. Calling a cluster a headache would be similar to calling a toothache a headache simply because it occurs in the head. The problem with the term 'headache' is that the label pushes us in a direction of treating it as if it were a headache. So, where does all this lead me? If the cluster is a scheduled event, and if this event attacks when we are in a sleep state (unconscious and not is a stressed state) then how is this different then being mugged in your bed by an intruder intent on your demise? Is it possible that the reason traditional medicine has no reliable treatment for the cluster syndrome, is because it has nothing to do with what we know as typical human illness? That is, could the cluster event be something that is being produced by an event or form of energy outside of our physical self? This question of course is not so far from some other hypothesis which suggest that daylight or lack of may have something to do with the cluster. However, what I would like to propose is that this be taken one step further. If an external event is producing the cluster, is it also possible that this event is also self aware and directing the cluster?
Nevyn Campanella <>
Alma, NM USA
Sunday, November 22, 1998 at 11:00:00 (EST)

I have suffered from ch since 1981. This morning I woke up at 4:30am with the first one since my last bout eighteen months ago. All I could do was cry because I knew I was looking at about eight weeks of hell. I realize that I am very lucky not to have them all the time as some sufferers do, but they always hit in the spring or late fall (always around the holidays)! I have tried over he last seventeen years to try and find some help for them and have been to several neurologists and tried various medications including oxygen but nothing has ever worked. Tonight as I dread going to sleep, I decided to search the net for some answers and was so very pleased to find this site. Reading all the entries from fellow sufferers made me realize that I am not all alone in this. I have never met anyone in all the years that I have suffered from ch that suffered from them also. It means so much to know that I am not losing my mind, which is how I sometimes feel when the headaches set in. I know that I am in for a long eight weeks and it's good to know that I can visit this site when I don't think I can take it anymore. My prayers go out to all of you who are suffering along with me and I hope you all have more luck than I have had in finding help because this affects my whole family, husband and children, when I have them and I would'nt wish it on anyone. God bless you all!
Sonja <>
Dayton, TX USA
Saturday, November 21, 1998 at 23:40:16 (EST)

I am a 60 year old male. My physician has diagnosed the headaches that I have been having as "cluster headaches." Through the information I have been reading I wonder if this type of headache and begin at my age?
Jerry Pyle <>
Winter Haven, FLI USA
Saturday, November 21, 1998 at 21:45:21 (EST)

I have been getting Clusters for over 10 years. They last about 7 weeks and occur about once a year. The longest period without the headaches was about 2 years.
Rick Jackson <>
Chicago, IL USA
Saturday, November 21, 1998 at 12:01:28 (EST)

Hi, I've been getting 'classic' clusters for 18 years and I sympathize with all of you... all we can do is think of each other when we're going through our nightly hell.
Mike Wich <>
Friday, November 20, 1998 at 21:11:30 (EST)

20 years of CH affliction, a 4 year hiatus (I mistakenly beleived I had outgrown/outlived CH's), and now a re-occurrence of that all-too-familiar beast. Crushed by this new and unexpected realization, but intensified my will to deal with this. This is not news you need at 44 years!! From reading your individual submissions, my heart breaks for all of you, gratified but also sad by the company...I never had any idea that there were so many cluster sufferers out there. Until I came across this site a couple of days ago, it has always been a solitary experience...I've never met another cluster-afflicted person face-to-face. Right now, Torradol (a NSAID) and Tylenol 3's as req'd work pretty good, will get back on Feverfew after this episode passes as a prophylaxis. I had good success with this approach years ago. I also intend to investigate alternative therapies in order to interupt the episodes and try to induce a remission. In fact I am my own guinea pig (in a sense) for my thesis work in herbal therapy. Obviously I am strongly biased toward doing a job of it!! Doing something is empowering though, and it will be an interesting experience, I'm sure. Any information in this arena would be most appreciated. When I read some of the entries here, I feel LUCKY by comparison to some of the more obviously less lucky sufferers. I've used the Ergotamine preps, Sansert, etc.,etc. ad nauseum and they all helped, to a degree...some definitely better than others. I'm lucky that for now, the anti-inflammatory approach is doing it least the risk of harm from side effects is less. I'll keep a good thought for you all.
Jim Steele <>
Edmonton, AB Canada
Friday, November 20, 1998 at 15:05:48 (EST)

I have been getting chronic cluster headaches for more than 12 years. I have looked all over the country for help, with no luck! It is,in a strange way, nice to maybe talk to others that understand what clusters really are!
Daniel J. Ellis <>
Wilkes-Barre, PA USA
Friday, November 20, 1998 at 08:06:19 (EST)

I thought I was the only person with this kind of problem. When I try to explain that the headache is like a damn clock people look at me like I'm nuts. When I am in the cycle, it starts about 90 minutes after I go to sleep. I wake with the pain in my right eye and it feels like an ice pick stuck in there. They last from 15 minutes to 45 minutes. They seem to rise to a high pitch pain then slowly retreat. Sometime feverfew seems to work, but eventually it gives out. My greatest fear is that at some point it will not stop. The nightly ritual expressed by others is exactly what I go through.
Nevyn Campanella <>
Alma, NM USA
Friday, November 20, 1998 at 06:39:40 (EST)

Hi, I have suffered from clusters and migraines all of my life. I am 28. I don't like to take pills because most of the time they get stuck in my throat. I recently read some info on Natural remedies and they sound pretty good. I also found out that a lot of the things that I have been doing aren't good for me. Thanks for being there everyone, with so much info. cl
Carolyn <CLGist>
St. Louis, Mo USA
Thursday, November 19, 1998 at 19:37:08 (EST)

Just got threw with a 4 day stay in the hospital with CH Hell again Love you all Bill
Bill Kimmes <>
Superior, Wis. USA
Wednesday, November 18, 1998 at 15:49:50 (EST)

Hi I like to stop by once in a while to see whats up or new. I've suffered CH for years..lately between Feb and June...though years before it used to be fall....tried just about all drugs used and have found verapimil at max dose and sanset for a short time works for me the last couple of years. Even when am out of a cluster period (like now)I remain on a small dose of verapimil daily. We all have to understand that different things/drugs work for different people. You need to give something a try before saying it doesn't help and then unto another drug(I know going thru pain for 3 or 4 weeks while trying something new maybe too much to ask someone to do but i strongly suggest it unless severe side effects.Well hang in there. When am not in cluster period I don't come here as often but if you have questions...or just need to chat about CH with someone who understands feel free to e-Mail
Michael <MeeZee@AOL.COM>
Tuesday, November 17, 1998 at 22:35:29 (EST)

I've been suffering from cluster heachaches for 22 years, I am 42 years old. Have a wonderful Dr. in New York who treats alot of patients , would like to chat with other sufferers. E-mail me anytime
Roslyn <>
Edison, NJ USA
Tuesday, November 17, 1998 at 18:31:52 (EST)

TOO SIMPLE TO BE TRUE? I am a migraine and cluster headaches suffer for many, many years. I get the classical migraine headaches every so often (about once every 3 months) they are bad but I can live with the 2 days of discomfort. I went through all the examinations and tests and have been diagnosed as a cluster headache suffer. The cluster headaches are the worst pain I ever experienced and lasted 3 to 4 months. I never had a prescription for my cluster headaches. One day I picked up a brochure on headaches pain at a local pharmacy and there was a small article describing cluster headaches, it was the first time I saw an article on this subject. This brochure was advertising for an over the counter pain killer under the name of "ACTIPROFEN" by the Bayer Inc. To make a long story short I decided to try these pills. To my amazement, somehow, they work for me. It's about 8 years that I first tried these pills and every year at the first sign of an incoming attack I start taking these pills as prescribed on the bottle (4 to 6 per day), in a weeks time I’m back to normal. I'm no doctor or scientist just a simple man, but I know that these "ACTIPROFEN" tablets work for me. I'm not here advertising for the Bayer inc. I'm just expressing my thought to you and if this can help anyone else, my little time spent typing this was worthwhile. Too simple to be true? If anyone try these tablets let me know how it turns out...
Paolo <>
Montreal, Qc Canada
Tuesday, November 17, 1998 at 15:40:45 (EST)

Thanks for your very informative website. Has anyone found a link between cluster headaches and types of epilepsy? I have suffered from cluster headaches for about 5 years. (I am one of the 1 in 6 female sufferers.) Last year I was diagnosed with atonal seizure disorder, probably caused by the acute bacterial meningitis I had when I was ten years old. The medication prescribed for my epilepsy (Neurontin) has cut the frequency, duration and severity of my headaches by about 50%.
Teleri Walker <>
Houston, TX USA
Tuesday, November 17, 1998 at 12:39:24 (EST)

Please dont look at the spelling and grammer below.. This long box is hard to type in.. (lol) thanks Kevin
Kevin <>
san angelo, tx USA
Tuesday, November 17, 1998 at 12:27:37 (EST)

My name is Kevin, I've been suffer with Clusters for 14 years and going through a cycle now i have any where from 6 to 8 aday. Im 35 y/o feel about 85, havent had full night sleep in 3 months. This is one of the longest cycles i think i have ever had. When i found this web site i got lump in my thraot tears ran down my face, to think theres so many people going through this pain, the word (pain) is a understatement. I dont know if i should be happy i found this site or sad i happy in the since i found other folks that understand what i'm going through. Ive been on every medication you can think of. Im now taking Sansert and oxygen this cycle i'm having now the Sanserts are not working, the oxygen is my like saver with out it i would have committed suicide by now. The oxygen really works the Sansert did work very well before. This would stop CHs from coming on and even shorten the cycles. CH wake me up 3 to 4 times a night but the oxygen kicks them in the ass most of the time every once in a while one will try to kill me, i wake up with shooting stabing blinding pain thats in the right eye, my eye tears up and turns beet red and swollen, my nose runs i and i start to hyperventilate the pain gos to the top of my throbbing head down the back of my neck. I scream and yell cry bang my head with my fist as herd as i can i pace back and forth. When CH gets so bad i rush to the hospital where they give me a shot and oxygen till its gone, my blood pressure gos sky high and my pulse jumps from 80 to 150, and the doctors stand there in amazement how bad the pain was and how fast its gone away, and for the next 8 hours my whole head is very sore and tender from the CH. I lay back down to sleep just to wait for the next attack to hit me. These beast are very hard on my whole family, they sit and just watch because there is nothing they can do to help me my mother brings me ice cold wash rags for my neck it dose help a little they try to comfort me. I get very short with them i dont like to be touched at all during a CH it seems to make my pain more intense. My neuroligists sent me to have a CAT-SCAN and MRI but found nothing, My family doctor is a very nice guy he has been there through it all and has really tried to help in every way possable with combination of medications now i'm getting ready to try Imitrex pills first if that dont work the injection are next. At this point in my life i'm willing to try anything, these CH have tried to ruined my life but i will not let it happen. Thank god for my family and loved ones. I was really upset to find there is so many of you having these NUCLEAR WARS in your heads, maybe one day soon there will be a miracle cure for us all. Just wanted to say thinks to this site because i've learned about few new drugs i havent tried like the Iitrex thanks again everyone. My prayers are with you all and your families.. Kevin McCartney
Kevin McCartney <>
San Angelo, Tx USA
Monday, November 16, 1998 at 20:47:36 (EST)

I have had clusters for three years, and can't find no treatment for the pain. Please help me if you have any ideas
John <>
Waterford, PA USA
Monday, November 16, 1998 at 20:35:03 (EST)

Thanks for the informative site. I first starded having cluster headaches about 10 years ago. The eposodes only last about three weeks and occur every other year. During this episode, I've been having two headaches a day (like clockwork at 12:35 a.m. and 12:35 p.m.) The first series I had left me confused and frustrated that (i) I could be awaken in the middle of the night with such a terrific headache (afterall, no one gets headaches in the middle of the night) and (ii) nothing seemed to help (I tried everything I could get my hands on). Fortunately, however, I have had great success with something as simply as Excedrin. I don't know why it works, but I find that if I take some at the onset of a headache, it prevents the headache from getting worse. Good Luck.
Stephen Elison <>
Houston, TX USA
Monday, November 16, 1998 at 11:48:14 (EST)

i am 38 yrs. old and i have had chronic CH for 16 long years.i found the diamond headache clinic in 1985 and since then i found a partner in my pain.i say they literally saved my life.there have been a number of magic pills,including verapimil and sansert.oxygen has been a big help also.i have been hospitalized 5 times for histamine desentiziation;each time less effective then the previous one.steroids had also shown to work. my current cycle has been going on for about 3 months,1-2 clusters aday.nothing worked to stop them ,so out of desperatin i had the gamma knife procedure on 11/6/ far i have had 4 clusters,not very severe but clusters nonetheless.i will try to keep you up to date.
pat mcgrath <>
dyer, in USA
Monday, November 16, 1998 at 01:07:34 (EST)

I have just been diagnosed and am currently in severe pain. I feel like I have a massive road drill in my head. I cannot take all the ergotamine derivatives and desperately need some relief from the pain, Australia seems a bit backward in dealing with this, does anyone have any brilliant ideas for the pain I almost feel suicidal. I have taken as many Panadeine Forte as I can and still feel like I'm dying. Help me please someone. Dawn
Dawn Bilork <dawn,>
Sunday, November 15, 1998 at 20:28:54 (EST)

Until yesterday I was not aware of anyone else suffering from CH. Having found this site which is truly tremendous, I am now aware of many fellow sufferers. My condition started 25 years ago when I was 23. It was 1990 before a Dr Zilka in London gave me a name for it. At the time I saw him I was having an attack which really excited him because he also said I had Horners syndrome! He actually told me the symptoms I was experiencing, blocked left nostril, local raise in temperature and a tingling scalp. It really was a relief for it to be given a name. I can't recall the drugs he gave me, but within a couple of days that attack had gone. In the early days I got attacks lasting about a month in the Spring and the Autumn. Each attack would be at about 10am and give excruciating pain for about 45 mins. Following trips to warmer climates, the attacks lessened to about once a year. Even more recently, having visited an osteopath on a regular basis, the attacks are about every 15 months, but last about 6 weeks, being gentle at the beginning and end, but occuring about 4 times a day in the middle. Having read some of other contributers comments though, I reckon I get off lightly. During my 'month' when the attacks occur, I always feel tired, and when I don't have the pain, feel like I've been 10 rounds with Tyson. At least at the end of it, its like coming out of a dark tunnel, and life is so good. My feelings really do go to you guys & gals with chronic CH as I now real;ise how lucky I am. No history that I aware of in my family, but I did get a head injury at football within a year prior to the first attack. I recently visited a 'specialist' and for a rather large sum, he told me that during my next attack, my GP should prescribe some sort of steroids. Could have got that same info from this brilliant site! Keep up the good work on this site and keep going all you fellow sufferers. It really would be great to talk to any of you, so please email me. Phil
Phil Oliver <>
Horsham, Sx England
Sunday, November 15, 1998 at 15:15:07 (EST)

Hi! It is with a big sigh of relief that I discovered this website. As most other people who have not experienced the pain C/H bring I guess they won't really fully understand our predicament. It was only last Wednesday, Nov 11, 1998 that I was diagnosed with C/H. I had suffered from this condition when I was still in college and now I'm 39 yrs old. In my case the C/H attacks suddenly disappear for several years and then all of a sudden...bang!!! All those who have suffered C/H know of magnitude of the pain. It is as if the entire world would collapse on you. I've had been C/H-free for 8 yrs. But 2 weeks ago, I suffered this splitting and terrible pain at the right side of my head starting from my right eyebrow. Nothing could really describe how painful and agonizing this feeling is. Since these attacks 2 weeks ago, I was rushed to the ER twice and has seen 2 specialists, an opthalmologist and a neurologist who diagnosed my case as C/H. In fact my neurologist suggested that I browse the net for info and data on how to handle and I guess manage my C/H condition. To those that initiated this site, I would like to thank you for all the comfort and understanding you have brought to all C/H sufferers. I guess one of the best medication I could suggest is a simple prayer for all of us and for all those trying their best to find the real mystery behind C/H. Godspeed and :), it's still not the end of the world.
Ed <>
Pasig City, Republic of the Philippines
Sunday, November 15, 1998 at 06:45:30 (EST)

Best regards for all cluster patients. Drop me a mail anytime...
Jarmo Pasanen <>
Espoo, Finland
Saturday, November 14, 1998 at 15:56:51 (EST)

Hi From another Sufferer; After spending another night from hell this is all I have to say. God says he doesnt put anything more on you that you can stand. But after these headaches for the last 25 yeara I honestly think I can stand no more. No more of telling my husband please, please d on't touch or talk to me while this is in progress. Please, don't try to rub m y nec, my handsmy my feet. Don't try to ask me how I am. I am in morbid pain. It hurts to talk, it hurts to move, I can't lay down. I can't walk. Please, as hard as you try, understand. I know you would take the pain for me. But believe me, I wouldn't give it to my worst enemy. To my beautiful child. Son, I know your trying to help. He gets a white towel puts in in the microwave and puts it on my neck. Son it doesnt help, but I wont tell either of you that because I know your trying. And God please, I just cant take this anymore. I have just about gone that last long mile. Can't go anymore. Please, please help me. Why do we go thru these things. When will it stop. How much more can all of us out here take. Myself, not much more. My heart goes to all of us with these. Anyone with ideas please feel free to write. We can swap horror stories. Thanks for the sound off. May God Smile Upon Us All
Pat t <>
Marianna, Fl USA
Saturday, November 14, 1998 at 06:25:50 (EST)

I heard about this site from a friend. She has a friend who suffers from clusters also. I have had cluster headaches since I was 14. I am now 28. My cycles have changed over the years but the pain is always the same. I am glad there are people out there like me. I have only met or shall i say talked to one other person. I hate people who say they get migrians also and they understand. They do not. But I have learned to tolerate them. It felt so good to acualy talk to someone like me. someone who realy Knew my suffering. Even though over the last 14 years, I have learned to deal with my problem on my own. I am glad to know someone has created this sight. Now hopfuly others will not have to learn to deal with their headaches alone and now when they hear someone say" I understand" they know the person realy does. I will lend any info, Knowledge, or hope I can . Let me end by saying no matter how bad the pain may seem remember the pain will stop but most important remember God loves you.
Barnes, michael <>
ft. washington, MD USA
Friday, November 13, 1998 at 13:30:23 (EST)

I have been an episodic head-banger since age 18 (now 38). My first c/h occured after having a beer at a party on a beautiful spring day (unfortunately, it took me longer than it should have to COMPLETELY abstain from alcohol during a c/h "danger period"). Like most of you, I spent years trying to figure out what was wrong with me (tumor, sinus, migraines, psychosomatic, etc.). Imagining that my family & friends would think I was psychosomatic, I tried to hide my pain as much as possible. Was properly diagnosed in 1993. Had three wonderful c/h-free years before this latest bout. Believe-it-or-not, for the past month I have had fantastic success using (over the counter) Excedrin Migraine tablets. I chew two up at the first sign of tingling over my eye or nose plugging. This has helped me function at work! My worst c/h's now occur while I'm sleeping and don't recognize the early warning signs. If I wake up with one, the only way that I've been able to eliminate it is by going running/jogging outside, which isn't much fun at 3:30am. Oh, by the way, I found out last week that my Mother's brother suffered with these bastards for years - until age 45 (he's now 64). Wish I had known that 15 years ago - mainly for the moral support. My thoughts and prayers are with you all...
Doug J.
Ridgefield, WA USA
Friday, November 13, 1998 at 01:30:43 (EST)

It is great to see so many folks helping each other out on this forum! There may be hope yet. I prayed for years, thinking it was doing no good. It's been three years free of cluster HA for me, and my walk with God has become stronger than ever. Hang in there folks, it does get better. Rich
Rich Perrine Jr. <>
Ridgecrest, CA USA
Thursday, November 12, 1998 at 23:19:31 (EST)

My friend has a 10 year old daughter who has been suffering from Cluster headaches for a year. I heard that this is very rare in children? Any advise. Any info. Thank you
marcia <>
Hollywood, FL USA
Thursday, November 12, 1998 at 20:54:31 (EST)

imitrex inj-midrin-fiorcet-plus the other stuff to break the cycle. er room what else? happy to have found this place. my wife hates me because of c.h. thought i was the only one. (for the last 9 years)
vic la cour <>
margate, fl USA
Thursday, November 12, 1998 at 18:19:05 (EST)

Boy I am glad I found this site. I have been suffering CH for years. Prednisone is the only thing that knocks it out. Tried other remedies. Its funny but a Ice Cube Compress helps. My CH's run from very mild to vicious. I am comforted to know that other brave warriors are fighting the battle.
Harris A. Herman <>
sacramento, ca USA
Wednesday, November 11, 1998 at 17:31:22 (EST)

These cluster headaches have been coming and going for about two and half years now, with no relief in sight. I've been on just about every medication: Imitrex, Indocin, Prednisone, Sansert, Calan (Verapamil), and a few others. Nothing has worked. I'm looking to try acupuncture and would like input on the efficacy therein. Finding this web site was like stumbling on a pot of gold. What a welcome relief. I look forward to speaking with other sufferers. Thank you.
Campbell Foster <>
New York, NY USA
Wednesday, November 11, 1998 at 12:56:10 (EST)

These cluster headaches have been coming and going for about
Campbell Foster <>
New York, NY USA
Wednesday, November 11, 1998 at 12:52:49 (EST) been a cluster suffer for the past 17 years.I would like to hear from other suffers,fellow head banger.
Dan Cullihall <>
Corner Brook, Nf. Canada
Wednesday, November 11, 1998 at 10:55:24 (EST)

I am a physician who has had cluster headaches for 14 years. I would like to share my experience in the hope that it will benefit others who suffer from this awful syndrome. My headaches are left sided and occurred every two years until two years ago when they became annual. Ironically, my twin brother also gives them every other year, but his are on the right side. Medicines that have worked for me include verapamil, prednisone, sansert, oxygen and antihistamines such as claritin. Imitrex injection has always stopped these headaches though on occasion, I have still get more than 2 a day. I have had mixed results with the tablet forms of all of the new migraine medicines. However, these medicines do not work every time and it is that my experience that one must try all these medicines to see if it works for that particular individual for that particular cluster cycle. I have also found that trying to get a good night sleep can be quite difficult and on occasion, melatonin, 3 mg sustained release tablets are beneficial in preventing awakening with cluster pain. Again, it has not always worked for me. Another therapy that I believe may be beneficial is full spectrum lighting. Particularly for those who get clusters in the fall, I believe that the amount of daylight that you are exposed to play some role in meeting to the clusters. You can get full spectrum lighting at plant stores, or there is a company called Northern Lights that sells lamps for treatment of seasonal affective disorder, which is probably related to the amount of sunlight. Again, I do not believe this will help everyone but at times over the past few years I have found this quite beneficial. Recently, I have become a believer that candida plays a role in these headaches in some individuals and I would like to share why I believe this is so. I have now stopped these headaches three times, with three different anti-fungal medications. I tried diflucan 200 milligrams daily for two weeks, and they stopped a cycle last year. This year, they re-turned and I tried lamisil 250 milligrams for four weeks (this is a medicine for nail fungus that also works against candida), and this also stopped the headaches cold. You can only stay on this medication for four weeks and approximately two months later, my headaches returned. I am now on nystatin tablets, one million units 4 times per day and this also has gotten rid of the headaches. The good thing about nystatin is that its side effect profile is quite benign, and can be taken for long periods of time safely. In addition, the generic form is quite cheap. There is a book that I ordered called the Yeast Connection and while little of it is devoted to headaches, there are guidelines to try to reduce the amount of candida in your body. Unfortunately, this organism is ubiquitous (everywhere) in its impossible to eradicate your body of this organism completely. However, at least for the present time, my quality of life in the fall has been better this year than any time in the past fourteen years. Unfortunately, I do now believe that candida is the answer for all sufferers of cluster headaches. This is likely a process that has multiple causes with the cluster pain being the end stage manifestation. However, after reviewing the multiple reports of individuals at this site who have benefited from anti-candida therapy, I believe there is merit to this hypothesis. I post this in the hope that some of you will improve with some of the therapies I have listed. If you want to try anti-fungal therapy, this has to be done in conjunction with your physician and or neurologist as do most of the other therapies that have listed above. It is important that all individuals continued to post there experience with this disorder. There a lot of bright people out there was suffer from this, and I congratulate those who made the connection between cluster headaches and candida. Good luck, I would not wish this on anyone. For those of you who feel like giving up (and I had been there), I will save that I believe this condition can be inherited. One of the things that has kept me going is that my children may inherit this from me, and it is up to me to figure out how they can deal with this later should they come down with this.
Paul Kwo <>
Carmel, IN USA
Wednesday, November 11, 1998 at 08:21:35 (EST)

JOE C. <>
Thousand Oaks, CaHel USA
Tuesday, November 10, 1998 at 23:40:13 (EST)

I am so happy to know that there are others out there who suffer from this horrible condition. It has been several years since my last attack, but I always expect them to return.
Roland Brown <>
Whitesburg, KY USA
Tuesday, November 10, 1998 at 23:38:01 (EST)

I have suffered from CH for about 20 years the pain can be so intense i want to scream or cry. Hang in there everybody have faith somethings got to work someday. I m on Cafergot right now and its working. Im a 41 year old male and the clusters are still here.My doctor is DR.Maziels with Kaiser permante Hes great.I guess i can live with the RX im on for now.
Joe C. <>
Thousand Oaks, CA. USA
Tuesday, November 10, 1998 at 23:29:34 (EST)

I have had Cluster headaches on and off for 10 years now and my doctor has now prescribed cafergot tablets. Ironically the headaches have now stopped so I can at least sleep again. It is good to find a site that deals so well with this painful problem.
Stephen Gray <>
Swindon, GL UK
Tuesday, November 10, 1998 at 07:29:56 (EST)

This message is for all you guys out there that are suffering like I used to. I'm now 25 years old, I got my first cluster when I was about 21. I was recently perscribed a medicine called Sulindac, some new anti-inflamitory drug. I have a new lease on life now. I can finally function without these damm headaches rulling my days. I'm free now, and you can be too. If all else has failed, ask you doctor about Sulindac 200mg. The stuff works (for me at least).
Eric Posten <>
New York, NY USA
Monday, November 09, 1998 at 23:32:08 (EST)

I am a 30 year old male who has had CH for the past year. I had one month of pain free days in the last year. The rest of the time it has been hell every night. I have tried almost everthing Lithium, Depakote, Verapamil, Prednisone, and on and on. The steroids helped for a while but the CH returned after about 2 weeks and the side effects of the Prednisone will keep me from ever using it again. My wife has threatened to throw me out if I take Prednisone again. I am hoping that I will come upon some treatment that I have not tried on this site.
Jim Strickland
Clearwater, fl USA
Monday, November 09, 1998 at 23:15:17 (EST)

Hey guys it was great reading & relating to all the letters. I am a 46 yr. old female that has been going thru the hell of CH for about 15 yrs. There has been no remission and they occur 2-3 times a week. It's the same old story except I use to get warnings...not now. They always occur when I am asleep. I wake in agony. Always on the right side. Stuffy nose..can't breathe at all thru that side. My jaw and teeth even hurt. The weirdest thing is even my hair on the right top of my head is tender and can't be touched. I am always freezing plus sweating all over. Most of the time there's alot of nausea but that relieves the pain for that moment. And god-forbid you try to sit still, I have to keep moving..rocking, walking, etc. I was told that CH was not hereditary but my grandmother had these. I can remember her taking Goody powders every day of her life. And what scares me about that is she died of a cerebral hemmorage at the age of 47. I hope and pray every day of my life that neither one of my sons get these monsters because they have made me stop and think life worth this pain. I did go thru the whole routine of tests, MRI, Cat Scans, etc. under a neurologist care but I was release from those $90 visits and sent to a regular MD. There is not one RX I have not tried, as well as oxygen. Some have worked for awhile but not for long. I currently am taking Fiorocet (plain) and using the Stadol Nasal Spray. A lot of MD's will not prescribe this because of the addictiveness but it works especially when you wake up to a full blown CH. It is a strong medication, I have to dilute it with water and I am careful not to use unless it is the last recourse. But as someone else said I would love to speak with a Dr. who truly understands this pain. I've had 2 children, broken bones and surgery and there is no pain like this. Good luck to all of you and I hope you have a loved one who understands your pain. Judi
Judi <Scyburr>
Lynchburg, Va. USA
Monday, November 09, 1998 at 21:51:55 (EST)

i have since 10 years CH, but since 4 month i have chronic CH. The pain is somewhat less, but the cluster takes much longer.
Paul Ridderikhoff <>
rotterdam, zh netherlands
Monday, November 09, 1998 at 16:06:34 (EST)

I wish this info had been available when I first started to suffer from CH fifteen years ago. Keep up the good work.
Kevin Holdsworth <>
Eindhoven, Netherlands
Monday, November 09, 1998 at 05:59:07 (EST)

I thought I was strange...thank you all for your comments, thoughts, and INFORMATION!!!! I don't feel so alone with my pain anymore - it doesn't take the headache away, but it does ease the suffering.
Oslo, Norway
Monday, November 09, 1998 at 04:04:45 (EST)

My name is Logan Symons. I am 20 years old and have just been diganosed with cluster headaches after suffering with them for a month before I was diagnosed.
Logan Symons <>
Peoria, AZ. USA
Sunday, November 08, 1998 at 22:30:30 (EST)

I would just like to say thank's for having this website and other's like it. thx carl
carl <>
brnswk, oh USA
Saturday, November 07, 1998 at 22:47:51 (EST)

I would like to know more about this Guest Book and what it can do to help me get rid of my cluster headaches. Thanks.
Carlos <>
miami, fl USA
Saturday, November 07, 1998 at 10:02:53 (EST)

I am a 29 year old single mother that has suffered from cluster headaches since the age of 8.I know now that I am not alone.
Dawn Johnson
St.Paul, MN USA
Friday, November 06, 1998 at 21:27:28 (EST)

I am a 29 year old single mother that has suffered from cluster headaches since the age of 8.I know now that I am not alone.
Dawn Johnson
St.Paul, MN USA
Friday, November 06, 1998 at 21:27:16 (EST)

I am a 29 year old single mother that has suffered from cluster headaches since the age of 8.I know now that I am not alone.
Dawn Johnson
St.Paul, MN USA
Friday, November 06, 1998 at 21:27:07 (EST)

Sorry, my english is not quite good, so I´ll use my spanish. Gracias por publicar estas páginas. Me han ayudado mucho. Creía que era la única persona en el mundo que sufría de este tipo de jaqueca. Sufro de jaquecas en racimo (en España le dicen jaquecas de Horton) desde los 12 años, ya tengo 40. He probado de todo para remediar este mal. Ahora estoy pasando una mala crisis con fuertes dolores 4 o 5 veces diarias que me incapacitan totalmente para mi trabajo (soy abogado)y me impiden dormir. Las crisis me duran aproximadamente dos meses, luego, gracias a la medicación me desaparecen durante un largo tiempo, pero siempre vuelven. Bueno, no quiero contaros mis penas, tan solo mandaros un fuerte abrazo.
Felipe <>
Madrid , Spain
Friday, November 06, 1998 at 15:39:33 (EST)

Hi, I'm Cory from Calgary Alberta, Canada. I've suffered with these stupid headaches for so many years, I can't remember when I have'nt. Friends and family try to understand but how can they. The one I hear fron them most is, "did you take a pill for that"? They don't seem to believe I could eat a whole flip'in bottle of the thing with no infect. It's nice to see others out there like me. So I think I'll go back to my hot rag and dark room.
cory <>
Calgary, A.b Canada
Friday, November 06, 1998 at 13:16:20 (EST)

Hello, I am 37 yrs old and have been suffering from CH for 13 yrs. I started getting the headaches when I was 24. I did not know what was wrong, my drs said it was my job,'air traffic controller', then it was the shift work, then they said I needed glasses.This went on for ten years. Finally I met my second wife and her father has CH, I went to a new dr and he agreed with my diagnosis. Ihave been on many different therapies but none work . I am limited on what pain meds I can take, because of my job nothing codiene based. Iwas on stadol for about a year and a half. Only used 10mg for 2 weeks, during CH season. Was great. Now my dr wont prescribe it so he won't getin trouble. We'll Ihad my first CH last night , and no meds. So I was prescribed migranol. And we will see how it works out
Sean F Scally <>
Rocky Point, NY USA
Thursday, November 05, 1998 at 15:14:24 (EST)

Hello from the great white north. Winter is approaching. I don't mind the snow, but unfortunatly this time signals the start of cluster season for me. I am 32 years old and have been suffering with clusters for 13 years now. I am already beginning to feel miserable as I know that in the next month or so it will start. Just like clockwork now for the past 13 years. Isn't it great to be regular.I am glad to have found this site and will probably using it more frequently in the next six months,the average length of my season. One question to throw out to my fellow club members. I have heard of a light that may assist cluster sufferers. If anyone is familiar with this mechanism, I would love to hear from you.
Scott E. Miller <>
Halifax, NS Canada
Thursday, November 05, 1998 at 15:02:26 (EST)

Hello from the great white north. Winter is approaching. I don't mind the snow, but unfortunatly this time signals the start of cluster season for me. I am 32 years old and have been suffering with clusters for 13 years now. I am already beginning to feel miserable as I know that in the next month or so it will start. Just like clockwork now for the past 13 years. Isn't it great to be regular.I am glad to have found this site and will probably using it more frequently in the next six months,the average lenght of my season. One question to throw out to my fellow club members. I have heard of a light that may assist cluster sufferers. If anyone is familiar with this mechanism, I would love to hear from you.
Scott E. Miller <>
Halifax, NS Canada
Thursday, November 05, 1998 at 15:00:37 (EST)

Iam 47 and have had CH since i was 20.This past week has been terrible with pain,its been over a year since ive had CH the VA hospital gives me florinal,but it doesnt help .After reading this sites guess book has givin me hope on finding some medication to help ,thanks.
Chuck Mccallister
Jensen Bch, Fl USA
Thursday, November 05, 1998 at 14:05:32 (EST)

Hi, my name is Tom and I'm a cluster headache suffer. These words are relativly new to me, even though I have been suffering since l was 15.(15 years now). My first came to me in the middle of a class in highschool, and I thought I was going to die, I wanted to die. Since it was fall, it was chaulked up to a sinus headache, so I took Max. strength Sinutab. When I still had a headache and was bounching off the walls because of all the speed in the non drowsiness of the pills, I began to think it was something else. Then the episode ended, and it was 2 years before another episode. I tried everything I could, mind you I wouldn't go to the doctor because that would be a sign of not being a "man". So my suffering continued. I wanted to die and actually had the gun in my mouth on a couple of ocasions, then they would subside. A news story on Diamond Headache Clinc showed me that I was not alone in my hell. That's when I made my first trip to the doctor, only about 6 years ago. Since then I have tried every drug for headache pain, right now Imitrex spray is working to abort them, but it is so expensive that it is almost impractical. Those drug companies should all be struck with these headaches, then we would see the price come into reality. I haven't tried the oxygen yet, but that will be next on the bill. It is still amazing to find that there are millions of people out there that suffer as I do. One thing that I have found that works for me if I wake up with one is to take the meds and then wet a washcloth, wring it out and stick it in the microwave for a minute and a half. I am a chef and that cloth comes out so hot that I can barely handle it with my bare hands but if I put it over the spot the headache is on, it feels soo goood!!! Cold only makes it worse for me, and the cloth has to be reheated frequently. (My fiance is so good to do this for me, she should be sainted for putting up with this, and we are the only people we know with a microwave in our bedroom!) I wish that there would come a day that all of us didn't have to suffer any more. Thank you for letting me get all of this out, finally I'm not alone! Thanx!
Tom Koegel <Chef>
Arlington Heights, IL USA
Thursday, November 05, 1998 at 13:33:19 (EST)

I am 41 years old,male I have been getting cluster headaches 25 years.
Michael Fiume <>
mt laurel, nj USA
Thursday, November 05, 1998 at 13:14:47 (EST)

I just came across this site. It is great to know there are others out there. Some of your letters have brought tears to my eyes. I have been a Cluster suffer for approx. 12 years. I was lucky that my GP identified my problem at my first visit. This, however, was not much help. I have tried everything over the years but no help. My C/H's have occurred every other year and only in the month of Oct-Nov- Dec. For some reason they have been more frequent and more severe this year. Again, I have tried everything to no avail, but this session of the headaches I have tried a different approach and found relief. When I feel one coming on I take Oxygen for approx. 10-15 minutes @ 6L per minute and then I exercise by running until I get my heart rate up. I have done this for the last six headaches and they have dissappeared completely within 30-45 minutes and did not re-occur during the night. I get the same results if awaken with one when it is full blown. Has anyone got any suggestions? Doug Porter Kirksville, Missouri Thursday, November 4, 1998
Doug Porter <>
Kirksville, MO USA
Thursday, November 05, 1998 at 12:24:32 (EST)

Hello family of suffers, I too suffer. The hell (Cronic Clusters) has had me in its grip for the past 5 years (4-8 a day, every day or night). I have taken more than 90 medications to no avail. I was divorced as a result, hospitalized many times, moved my job from Maine to Colorado and still suffer. I submitted my self to a right-retrogasserian radiofrequency rizotmy (Brain Surgery) which left me with many side-effects (like loss of vision) and still with the headaches from hell. The doctor said the surgery was a complete failure. I live each day now using meditation to get through the pain. Some drugs have given temporary relief but nothing has cured. So many times I wanted to give up, but I live on to be a father to my son. I only pray he never suffers. My headaches are always right-sided temple area. They last from 30 minutes to seversl hours. Someday they will go away or I will. Thanks for the site.
Alan G Anderson <>
Commerce City, co USA
Thursday, November 05, 1998 at 10:47:29 (EST)

"NObody knows the trouble I've seen" except for all of you poor bastards! I'm 35 and have sufferd with these headaches seens I was 16.Its amazing to me how many doctors out there do not kwow how to help someone realize what they are suffering from.Perhaps if there were more doctors who could put down there golf clubs long enough to do some home work on this matter,"Us" (the chosen few) would not have to wonder what in the hell is wrong with us as long as some of us have!No living creature should have to endure this kind of pain in this day and age.Remember my brothers if you are going threw a cluster period right now,dont lose hope because they WILL end soon!!!For now oxygen is the only thing that works for me and I am forever grateful to the doctor who finaly helped me back in 1992.God have mercy on us all and remember you are not alone.
Michael GrammarHouston
Houston, Tx USA
Thursday, November 05, 1998 at 05:00:26 (EST)

I have cluster & varient magraine. So far no treatment works. Tried them all. Doc left me a voice mail today (while I managed to sleep for 1 hour today) she said, "sorry I can't do anything for you, I suggest you go to the ER. I'm sure I will be there in the next few hours.
jim carpenter <jimc5@aol>
auburn, ma USA
Wednesday, November 04, 1998 at 22:58:45 (EST)

I'm a recent "diagnosee" of CH. I started getting attacks about 2 weeks ago. Desperate to find out exactly what it was I was suffering from, I sought medical attention almost immediately. At first, I thought I was suffering from migraine headaches and sought treatment from that perspective, but after doing a LOT more research on the subject of headaches, I found I had a "textbook" case of CH. I'm a graduate student, and my first attack happened while I was at home during fall break. The situation at home was (and is) not the most relaxing; my father is slowing dying from tumors that have spread throughout his brain. My mom, while trying to hold down a full-time job, has been trying to give him 24 hour care at home. My brother has been pitching in whenever he can (he has a job, too), and that week was my turn to pitch in. It was the scariest, most stressful, most aggravating time of my life. I would get so angry at my father when he "acted up," trying to climb out of bed, screaming and swinging his arms and legs, that I think I spent the entire week crying. Halfway during the week, at about 6pm, I took a short nap, having tended to my father's needs all day. I woke up with what felt like a railroad spike driven through my right temple. It went away in about 30 minutes, and I just chalked it up to stress, until the next one came, and the next one, and the next one. I thought maybe I had a brain tumor myself, and I was so scared. I came back to school, and the headaches continued. I sought help on campus, and that's where I got the information about CH. I was a textbook case! I did a lot of research on the subject, mostly information from this web site. (Thank you.) Sometimes I get so scared that I don't want to fall asleep, that I just want to stay up all night, because that seems to keep the HA to a minimum, at least. I found CH starting to affect my schoolwork, and I can't continue to let that happen. I'm on Imitrex right now, fortunately my student health insurance is paying for this expensive medicine. It usually gets rid of attacks in about 10mins. I think it's great that you have this web support group thing going on, I really don't feel comfortable giving my e-mail address or any other information out right now, but I'm pretty certain I will eventually. For now, I'm keeping up with my Imitrex whenever I get an attack, I'm praying to God to give me the strength to go on, although there have only been a couple of times my pain has been so severe and so prolonged that I've thought death preferable, and I know that I'm going to do something REALLY GREAT for myself on my first day of temporary remission!
Wednesday, November 04, 1998 at 22:49:23 (EST)

I am a 41 year old male who has been suffering from cluster headaches since I was 27 (almost 14 years of the knife stabbing pain attacks behind my left eye). I had no idea what these episodes were. They started in the middle of the night for weeks on end. After several years I went to the doctor with no success of treatment. They ruled out all the "horrible" possiblities i.e., brain tumors, etc. My wife found and article in a magazine about these things called cluster headaches and she told me that the syptoms were identical to mine. Once I identified what was happening to me I returned to the Dr. To make a long story longer, more doctors, more episodes, and NO relief! Finally, 6 months ago I decided to go back to the Dr. and he prescribed Migranal (D.H.E.). It came in the form of a nasal spray. This medication requires that the first dose be taken under medical supervision. Yeah right! Just what someone with head gripping pain wants to do; drive to the E.R. and wait! Well, I had no choice and decided to get it over with. I toke the medication at the end of my headache and couldn't really tell the effect. From then on I was allowed to take it at home. Some people respond to this medication with "sky rocketing blood pressure" - that's why the first time needs to be taken under supervision. The second headache a few days later I took it and my headache was aborted. I still didn't believe it - I chalked it up to coinsidence. Headache number three was also aborted about 15 minutes after the onset. Headache number 4 was living proof it worked. I had an extremely intense attack and could barely set up the medication fast enough. After 10 minutes the pain was dulled and 5 minutes later it was GONE! Since then I have used the medication 4x with the same results. I am sold! Today I visited my regular Dr. and he told me that he uses the same stuff, but in injection form. He prefers it over the nasal spray because you get the exact dose you need and it is even faster than the spray. Needles are not my favorite thing, but it is most definitely worth a shot! (no pun intended)
Steve Sieg
Portland, OR USA
Wednesday, November 04, 1998 at 20:19:01 (EST)

This is great. I'm 28 and I have not met anyone else who suffers from CH. I had my first attack when I was 21 and living alone. I thought someone had broken into my home and hit me over the head when I was sleeping. I couldn't see and I thought my head was split open. The next day when I consulted my doctor, I was told it was a migraine and precribed meds containing caffine. That didn't work. I had to ride out my bouts for 5 years without any medication. It wasn't until my mom saw an article about CH, that I realized what my problem was. I always thought no one understood what I was going through. Friends of mine complain about their migraines and I think their lucky. And now after reading over this site, I realize I am lucky. I get episodes once a year (Oct/Nov), for about 2 weeks, my attacks were once a day. Two years ago I had the worst attack which was twice a day for 5 weeks. That's when I found Imitrex. Imitrex actually stopped that episode. Last year I only had two. Let's see how this year goes. I just got my first attack for this year last night. I have to say, after reading I feel soooo lucky. And then again, scared. I hope mine don't get worse as the years go by. Stay Positive, Rosie
Rosie J.
Miami, FL USA
Wednesday, November 04, 1998 at 16:26:43 (EST)

Now in my 4th round of clusters, I finally found this website. Thanks to the people responsible to set up a place where we can all get together. I spent about an hour looking through the postings and made no dent. I guess that means there are a lot of us!! My bouts (until the present one) have been less severe and of shorter duration each time. My current one started very mild--really minor discomfort, lasting 20-30 minutes several times a day, but with the characteristic same side, beginning at the temple and spreading forward and backward on the right side, all the way down my back. After almost two weeks, severity has increased, but duration has been 10-60 minutes; in the old days, they had lasted 1-6 hours. Even though I'm not (yet) debillitated in the current cycle, I am becoming obsessed with waiting for the next one to hit. It is both gratifying and saddening to know there are so many others with variations on the same problem. May we all some day find peace....
Bruce Biskin <>
Yardley, PA USA
Tuesday, November 03, 1998 at 23:51:59 (EST)

Hi, I began having cluster headaches @ age 19. I had/have chronic clusters for 18 years. I had a craneotomy in 1987. I felt like my life had started all over again. But, I will never ever forget the pain. And the way the headaches "ruled" my life. Now, Retinitis Pigmentosa (RP) is ruling my life. But because of having to deal with the headaches for so many years and the complications that arise from the headaches, I am learning to deal with losing my sight. At least it is not painful. Given a choice of RP or Cluster Headaches / Horners Syndrome, i would take RP.
Janis Walker <>
Salisbury, NC USA
Tuesday, November 03, 1998 at 18:56:50 (EST)

Although I do not suffer very often from headaches of any type, I was amazed at reading the hundreds of posts by those that do. So why am I writing? There are many references to "verapamil" in the postings. I wanted to share my experiences with this drug, not to discourage any of you from wanting to try it but to make everyone aware of a side-effect that is not to well known. In case any of you verapamil users are experiencing these same symptoms, you might want to check to see if verapamil is the culprit. Of course, from what I've seen so far, that may be the least of your worries if it is giving you the relief you need so badly. And I do understand that aspect. Anyway, there was a layman's article in the 9/97 issue of Consumer Reports' newsletter "On Heath" titled "What caffeine can do for you---and to you" that really changed my own life! In a sub-section in that article titled "Drug interactions," it stated in part and I quote: "Various drugs---including birth-control pills, the heart drug verapamil (Calan, Veralan), and the ulcer or heartburn drug cimetidine (Tagamet)--- can hamper the body's ability to dispose of caffeine. So in people who take these drugs, even low doses of caffeine may trigger insomnia, irritability, or palpitations." I was a relatively low caffeine coffee, a max of one diet-cola a day and 2-3 glasses of ice tea each day. But I also had suffered with severe palpitations and anxiety (panic) attacks for about five years. It was so bad that many times I thought I would die and had actually called 911 during a particularly bad attack. I would wake up practically every night with severe palpitations. After a couple of years of this and several medical check-ups that found nothing wrong, I even began long term psychiatric sessions, twice a week. About two years into therapy, I just happened to be reading my monthly issue of On Heath when I came across the above mentioned article. That changed my life! I stopped all (99%?) caffeine that I was aware of and my family doctor changed my hypertension medication to Diovan, a completely different class of drug! My problems disappeared immediately. It has now been over two years and I have not had even one hint of palpitations or anxiety attacks! And I feel great to this day.
Sam McConnell <>
Plant City, FL USA
Tuesday, November 03, 1998 at 16:19:53 (EST)

I just found you guys! I'm pretty new on the web but not new with the pain. I'm currently in a cycle of about two a days, and when I'm not hurting I'm downloading data on clusters. I am self diagonsed as of about a year ago. I had to take in 20 pages of study to my general prac. so they would quit telling my it was stress and allergies. I wish I had something new to help. I have tried everything from sticking my head in the freezer (moderate relief) to sticking habenaro peppers up my nose. Thanks for being here. My wife can only take so much complaining.
Mark Young
Dayton, oh USA
Tuesday, November 03, 1998 at 12:40:07 (EST)

It is good to know that I am not the only one suffering from this pain from hell.
Calvin Lin <>
Tarrytown, NY USA
Tuesday, November 03, 1998 at 11:12:50 (EST)

Some more information for you all: The Headache group at the Institute of Neurology and Neurosurgery at the National Hospital in London have issued this report. Re: CH It has been thought in the past that the problem arose from the blood vessels. However the relapsing-remitting course and clock like regularity cannot be explained by a purely vascular cause. At the Institute of Neurology, London they have been investigating the mechanisms behind CH using positron emission tomography (PET). Following the injection of a radioactive tracer, PET allows changes in different structures of the brain to be observed over a period of time. Individuals with chronic CH were therefore imaged during an acute cluster attack. Another group of individuals with episodic CH were also imaged whilst out of their bout and therefore pain free. An area of activation within the brain was seen which is though to be specific to CH. This region is not seen in other types of facial and head pain such as migraine. This region is within the hypothalamus, the area of the "biological block" in the brain. This region was not seen to be activated in those individuals who were imaged out of their bout. This is in keeping with the relapsing-remitting course of CH bouts and the clock like regularity with which the attacks occur, Moreover this supports studies which have shown that during a bout there are abnormalities of levels of hormones controlled be the hypothalamus. Activation was also seen in the region of the blood vessels. This is in keeping with the observed dilation of the blood vessels during a CH attack. Activation of blood dilation has been seen in other types of head and facial pain; therefore it is though that dilation of the blood vessels occurs secondary to different types of head and facial pain, and is not specific to any particular type of headache. There have been different hypotheses attempting to explain the mechanisms behind CH. This study allows for the first time the area of the brain thought to be responsible for triggering of CH. It opens doors for continuing research into CH with the view to developing new effective treatments for this disabling condition.
Deborah Noyce <>
Birmingham - UK, United Kingdom
Tuesday, November 03, 1998 at 05:51:19 (EST)

I am a Cluster Headache suffer!!! Sorry to know there so many of us that suffer from these!!!
Earl O'Hara <>
Greensboro, NC USA
Monday, November 02, 1998 at 20:55:06 (EST)

Severe headaches at times...also ADHD, etc....Notice drop in Barometric pressure contributues or correlates to pain and inflammation. COMMENTS???
ty <>
Sharon, PA USA
Monday, November 02, 1998 at 20:18:16 (EST)

I am 31 and had never had this type of headache before. It woke me up at 2am and wouldn't quit, even after several Tylenol. (I know now that wouldn't have worked anyway). I thought it was a brain tumor and was bracing myself to die and leave my 2 kids motherless. I wanted my husband to take me to the emergency room. Finally around 5am, it lightened up, and continued to lighten throughout the day. Still, it left me exhausted. I hope to never have one of these again. Is it possible to only have one of these "clusters", or will it repeat itself? Feel free to e-mail me.
Kristin Brown <>
Orlando, FL USA
Monday, November 02, 1998 at 17:47:28 (EST)

I am not a cluster headache sufferer; however, my younger sister is. She is 31 years old and has had these clusters for 8 years. She has two small boys and needs help desperately. He headaches have gotten more and more frequent. Does anyone know of a neurologist? Or any one that can aid with the pain of the cluster. She has taken so much medication, I don't know how she survives that. Her face and neck are very swollen from the medications. She does not have access to the internet, but I will pass on any information you may provide. She is desperate!
Pamela Smith <>
Huntsville, AL USA
Monday, November 02, 1998 at 13:43:40 (EST)

Just found your web site. A lot of useful information - will take me ages to download. Anyway, will let you know if any of the recommendations will help me to overcome this most painful and least understood afflication
Peter S Hammond <>
Littlehampton, Sx England
Monday, November 02, 1998 at 13:00:25 (EST)

I was very surprised to read there are so many people worldwide suffering from the CH which also is called Horton Syndrom in Belgium. I am one of the millions suffering of it. I have tried out different drugs, with no result. So far even that local doctors told me that I had to learn living with it. Finally I even went on chirurgical treatment of the sympatic nervessystem even with no result. 10 years ago I got the adress of an antwerp medical doctor who also treats accupuncture. Desperate I went to him and after 10 sessions of accupuncture, I had no attacks anymore for 4 years. It comes back after that time and after a new treatment, again I was free from attacks for 4 years. This might be a good idea to see a accupunturist to speak him about.
horsten louis <>
Antwerp, Belgium
Monday, November 02, 1998 at 10:08:04 (EST)

Imiject. I am visiting this site for one of the first times since my sister in NY pointed it out to me. I felt very happy after browsing through it, because my doctor's diagnostic was long to come about... Anyway, I read all the descriptions of treatment and found nothing about Sumatriptan or Imiject which is an injection that does the job for me in about 2 to 5 minutes. I believe Imiject is the European version of Imitrex which is ingested orally or "vented". Is that correct? I can tell you it works wonderfully: only problem is, maximum of 1-2 injections a day, so the 3rd one is a real killer. Please let me have your input on this matter, and thanks a million for this site. I was seriously thinking (although I would never have done it) of killing myself about 2 weeks ago.
Pierre <>
Paris, France
Monday, November 02, 1998 at 08:50:53 (EST)

I am new here,looking for med. info.
Mark Manfroni <>
Kirtland, OH USA
Monday, November 02, 1998 at 07:23:08 (EST)

Thanks for a great site. I've been suffering from CH for the past 18 years (with remissions), and as every new crisis appears, my stamina is slightly lower... Reading about - and sharing - this nightmare with others is extremely helpful.
Giorgio Porzio <>
Tervuren, Belgium
Monday, November 02, 1998 at 03:21:04 (EST)

Thanks for this site, just thanks
Don Neusen <>
Phoenix, AZ USA
Sunday, November 01, 1998 at 19:50:30 (EST)

Wonderful site. I'm a typical sufferer, female, 27. Have had clusters for 10 years, and many more to come. This site and oxygen has been a Godsend this year. If you have never tried Oxygen, I encourage you to try it. It takes my clusters away within 15 minutes. It works for some people, and not for others. But like everything else, it's worth a try. I'm just hoping my monster won't ever get immune to oxygen! I get my clusters once a year between summer and fall. Nice to see this site helping so many people! Michelle A.
Michelle A. <>
Bellingham, WA USA
Sunday, November 01, 1998 at 17:14:15 (EST)

no one thru out seems to mention surgery as and option.i've heard of a procedure that i'm going to check on.i'll update all of you when i know is so nice to know i'm not going crazy when i here all the testimonials about's so hard to make other people understamd the pain. so how some where were all going to beat this thing. with GOD as my witness.i feel a special closeness to you all because what we go thru is so misunderstood. hang in there group.
Sunday, November 01, 1998 at 14:25:00 (EST)

I'm 52, female, and have had clusters since my early 20's. They advanced to severe pain in my late 30's and have been essentially chronic. 40 mg prozac seems to break them up so that I might get a day or two of relief; otherwise my pattern is 4-6 a day with a record of 10 in one 24-hour period. Sleep, wind, and cold air seem to be triggers, and I have the worst pain spring and fall. My dad and his twin and their dad have them, and there's a long family history of "sinus trouble" and "weepy eye". No medication has worked on the episodes or pain for me, and I will probably try lithium next. It is critical to develop some sort of coping strategy to get by, and this site offers a coping essential--support! Thanks.--Judy
Judy Wayenberg <>
Gig Harbor, WA USA
Sunday, November 01, 1998 at 13:09:16 (EST)

i get cluster type headaches after and only after a hard workout
gordon <>
santa rosa, ca USA
Sunday, November 01, 1998 at 12:39:43 (EST)

I am a 50 year old male and have been suffering with cluster headaches for almost 20 years. I have been tested for every possible malady the doctors could imagine, and have tried all the drugs. Most of the doctors thought I had sinus or eye problems and could not believe the prescription pain killers had no effect. I was finally dignosed as suffering from clusters in the late 80's. I thought the end was finally near, but the diagnosis does not mean a cure. I have been lucky enough to find a neurologist in Austin, Texas who I think understands the pain. I am one of the lucky ones that Imitrex injections help. The only problem with them is they only releive the pain for about 3 to 4 hours. My doctor now has me on heavy doses of prednisone and verapamil. I am allowed to inject myself with Imitrex (sumatriptan)twice a day, or one injection of Imitrex followed by one Amerge (Naratriptan) and another Amerge 10 hours later. Oxygen gives me relief within 10 to 15 minutes, but only lasts for about an hour, then the pain hits harder than ever. My doctor took me off the oxygen because of the "rebounds" I was getting. I was pain free for 16 months before this episode started and thought I had reached the magic age when they would mysteriously disappear. No such luck. I have tried all the natural remedies, but have not found anything that works. I am now trying the water therapy, drinking large amounts of water every hour. My cluster has subsided over the last three days to a constant pressure behind the right eye, which is aggravating but bareable. I don't know if the water is helping, but my kidney's are working great.
Gary Williams <>
Georgetown, Tx USA
Sunday, November 01, 1998 at 10:46:34 (EST)





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