Cluster Headache guest book
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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 August 2000. Thank you for your continued active involvement in this site and keep those guestbook entries coming!


Click Here to go back to the Main Guestbook

I just logged on to this site for the first time, and I haven't stopped crying. I'm afraid if I keep crying I will curse myself into another headache. To read that grown men cant take the pain and they do the same Crazy things that I do makes me feel so much better. I think I will have all my friends and family go to this web site and read that I am not the only one that does strange and bizzar things to ease my pain. I have never truly shared my pain with any one besides my doctors. I feel that they are not even worthy of me sharing it. It's too intense for people that dont have it to understand. I am sick of explaining the pain because there are no words that give it justice. I have a feeling that I will be spending alot of time on the computer. I need to find out if there are alot of women out there that suffer with cluster like me. Thanks so much for creating this site. Susan
Susan Holder <>
Allen Park, MI USA
Thursday, August 31, 2000 at 21:11:13 (EDT)

I have never seen so much information on Clusters before. Most of the doctors that have treated me in the past aren't this well informed on my condition. I have suffered for almost 12 years, most of that time no one could tell me what was wrong, it was even suggested that it was psychological. I didn't think there was anyone else out there that suffered like I do. I thought I was all alone.
Teresa Goetz <Tesa34theboss>
Knoxville, TN USA
Thursday, August 31, 2000 at 18:01:16 (EDT)

suffered since 83, have been pain free for one year. when and if they start again will go to Baltimore headache instuite and probable get Verapamil and lithium seems to straighten me out. stadol nasal spray works makes me feel real good anyhow, probable the pain is still there but i don't notice it as much.
Glenn <>
Chewsville, md USA
Thursday, August 31, 2000 at 13:47:55 (EDT)

Iwas diagnosed with ch 4 years ago. nothing seems to help very well this last cluster has lasted about 1 month my family docter keeps me comfortable with pain meds but its getting to the point where these are not helping any more can some one help me with advice serious answers only.thanks larry;i hope there are people out there that are truly getting relief from these headaches'
larry bowman <>
rensselaer, ind USA
Thursday, August 31, 2000 at 07:09:35 (EDT)

I'm a sufferer of some 25 years, roughly two weeks a year regular. I've had some measure of success dealing with them though, I'll post the story on the message board.
Colin Lay <>
Edmonton, AB Canada
Thursday, August 31, 2000 at 03:17:34 (EDT)

This is my first introduction to a website such as this. It certainly is comforting to know that thousands of others can identify with what I'm undergoing -- but, I truly wish that no one else had to suffer this. When I read the traits of the cluster headache sufferer, I felt that someone had interviewed me! I was surprised that learn that some women say that cluster pain can be worse than the pain of childbirth. That should put it into perspective for a lot of folks. I'm nearing the end of my 2 month episode now. It'll probably be about a year until the next one. I look forward to associating with fellow sufferers and keeping in tune with current research developments. Hang in there everyone!
Bob Palmore <>
Jacksonville, FL USA
Wednesday, August 30, 2000 at 13:13:42 (EDT)

Uncle Sammy retired me at the age of 23 from the U.S. Air Force. That was back in 1975 and I was a Sgt in Intel. I have suffered from cluster/vascular headaches every since. I have awaited everyday for my best friend, Mr. Pain, to come, as usual, and visit. My hx's though, do not come like clockwork, or are they hospitable enough to leave in 10 to 15 minutes. When I was retired I was given IM Talwin, Meperidin, Demerol and Morophine from the V.A. Of course I also took phenergan?(sp) for nausea, for 7yrs. When I read a Neurologists medical report that said this kind of pain usally ends up with suicide, the shots stopped. I had at that time a 4yr old daughter who I did not want her to grow up without a Dad. Tablets from asprin to zacrin have all been tried and used, but Mr. Pain and me still survive. I say all of this light-heartedly, but I do wish for the day I can put out a No-Vacancy Sign and not leave the lights on for him. If there is any other individuals who have symptons, please email me at mrmojo572. Thanks for your web "clusters", from my heart and not for laughs, and hang in there. Me and Mr.XXXX are now in our 26th year. With all the respect I can offer you, Thank You.
terry <Mrmojo572>
pocatello, ID USA
Wednesday, August 30, 2000 at 11:27:49 (EDT)

Hello...just checked the site out for info....I've been dealing with a constant throbbing ache in my left temple nearly all year, and was just stopping by to learn.
Angie <>
Tuesday, August 29, 2000 at 21:58:05 (EDT)

after many years of clusters and the neuro doctors have no idea how to treat it i am so happy to see this
susan jarvis <>
weaverville, nc USA
Tuesday, August 29, 2000 at 20:45:11 (EDT)

Sorry it took so long to find you. I'm just beginning my cycle, and thought it'd be wise to see what's up with other sufferers. Even better, my wife gets to see that there are people who have to "support" us during these periods. Oh, well... here comes another....
Jack-Y <>
Castleton, NY USA
Tuesday, August 29, 2000 at 04:56:31 (EDT)

So. It has taken 15 years to have found you. I am 56 and have not known a name for my pain. Your descriptions pinpoint my beast as cluster headaches. They began one balmy night of summer alcohol over indulgence. Not an infrequent action, but this time - bang, and never the same since. Well - CTs and probes and test after test to show how sort of healthy I was. For the past twelve years, more on than off - avoiding alergic trigger foods fondly adored - of milk products, tomatoes, chocolates etc. And then - three years ago - silence, the quiet. Was this the end? So it seemed. Back to chocolate and cooked coffee, choice wine and local beer. Then seven weeks ago - medication including aspirin for circulation problems in leg. Six weeks ago - stopped smoking. Five weeks ago - wine and a healthy draught of local beer - the beast rears ugly head. So now imitrex (in capsule form). Not sure that it helps. The water treatment seems to stave off the pain of an hour here and an half hour there. Oxygen postpones for another 45 minutes. (Both suggestions I picked up from your site). I notice that when the labido (sex drive) is high the pain seems more controlable. (any comments on this?). So how long now 'till next attack? When will these clusters end? So happy to share this experinece - and if there is any advise out there...
Barry <>
Amiad, Israel
Monday, August 28, 2000 at 16:05:40 (EDT)

I have suffered for 21 years and they are cronic.
Jeffrey B. Archer <>
Sarnia, on Canada
Monday, August 28, 2000 at 13:25:20 (EDT)

I almost cried when I found this site (and I'm not currently in a cluster episode). Just knowing that there are other people who understand, who *know*, what this pain can be means so much. My heart goes out to all of you.
Eric Brody
San Francisco, CA USA
Monday, August 28, 2000 at 03:12:09 (EDT)

I am 43 years old and have been suffering with cluster headaches for about 25 years. I just ended my longest remission to date (almost 3 years). Well, they are back. I went surfing and found this site. Thanks for the opportunity to learn more about the condition that changed my life 25 years ago.
Guy Barker <>
Richmond, VA USA
Monday, August 28, 2000 at 00:33:59 (EDT)

Have had chronic cluster headaches since 1969 and am so glad to have found a site like this. Thanks!
Larry Atkinson <>
Wild Rose, WI USA
Sunday, August 27, 2000 at 17:47:21 (EDT)

i have been a cluster headache sufferer for over two years. i have been to two neorologist in the past. i have been put-on or tried 14 different meds plus oxygen. six months ago i was put on dalantin, what a difference! new life. i am 80% free. when i feel the onset i can take two aspiren, and within five min. the onset is gone. i strongly suggest talking with your rx and trying dalantin. imatrix,lithium,depacote,staroids ect. did not do anything for me. i would be curious if anyone tries it and has the same positive results
mike mathews <>
waukesha, wi USA
Sunday, August 27, 2000 at 12:51:15 (EDT)

thank you for letting me know i am not alone. i am recovering from a month long bout (the second in 5 years) and offer my hopes and prayers to all CH sufferers. something that has helped me is to take 200-400mg ibuprofins every few hours for weeks at at time. it is supposed to thin the blood and reduce pressure. this has worked for me.
marcus <>
Las Vegas, NV USA
Sunday, August 27, 2000 at 09:13:42 (EDT)

sometimes imformation is not good. I found out I have more frequent and longer headaches than anyone I've read about here. the pain who can tell. when your a mass of quivering jello who cares
john atlee <>
selkirk, ont canada
Sunday, August 27, 2000 at 08:02:21 (EDT)

I was glad to find this site I thought I was the only suffering from this type of headaches I had know idea there was so many it's 4:29 a.m. and I just got over a 3:00a.m. dance with the devil I have to fight my way to the back part of the house to keep from waking up my wife daughter and grandson, I can't stand for them to see me like this god bless you all and I hope for all our sakes they come up with something sone don't know how much more I can take???????
Chuck <>
St.Louis , Mo. USA
Sunday, August 27, 2000 at 05:24:20 (EDT)

I have been suffering from clusters since I was 13. I am now 49. They were not properly diagnosed unitl I was 34. Prior to that everyone was treating mne for sinus. It was good to know the diagnosis. But the suffering remains.
Jim Clark <>
Corona, ca USA
Saturday, August 26, 2000 at 23:42:09 (EDT)

Hi,I'm 40 years old, and I'm suffering clustes since i was 13. I hope for a real treatment soon. Thank .
Ignacio <>
Santiago, Chile
Saturday, August 26, 2000 at 23:41:51 (EDT)

Hi, I have just found your site. What a REAL help it is to know that I am not alone. This is my second bout of CH's the first was in 1994 and now there back.. making up for lost time. My doc has put me on Pizotifen 1.5mg and also Naramig 2.5mg tablets. Naramig are VERY powerful for pain relief but take 30-40 mins to kick in.It's just a relief to read all these's as if they are talking about me. I am Just glad that I won't die, the pain will pass but you can't help but live in fear.. I am getting 4-5 attacks every day. When I am not in pain I seem to be 'spaced out' with the medication. Thanks again.
Charlie <>
Nailsea, Bristol,, United Kingdom
Saturday, August 26, 2000 at 19:34:57 (EDT)

Bill <>
Pocahontas, AR USA
Saturday, August 26, 2000 at 14:57:55 (EDT)

Thank you for making me feel no so alone!
Ricardo Haro <>
Mendoza, Argentina
Saturday, August 26, 2000 at 14:20:49 (EDT)

Hi,, I have been suffering from cluster headaches for 43 years, it all started after I was injured in a military parachute jump and brain concussion. They started waking me up at night, but lasted only a few minutes. Within a couple of years I was waking up with full blown cluster headaches that oral medication could not control, many nights my wife took me to the emerency room for a shot to put me out of my misery. One other note, my clusters would generally start in the fall and would last for 8-10 weeks. I feel I have a very strong threshold of pain, I spent my first career in the US Army Special Forces Groups (Green Beret), I am a Master Parachutist with numerous parachute jumps in all types of terrian and weather conditions. But, I must admit, the cluster headaches that I incurr puts me down for the count, my heart goes out to anybody that has cluster headaches. If anyone has some ideas pertaining to diet, or foods to avoid while in a siege of cluster headaches, I would appreciate your comments.
Sherman Smith <>
Layton, ut USA
Saturday, August 26, 2000 at 14:04:40 (EDT)

Hello i'm on my second cycle my first was about 2yrs. ago i didn't know what they were i didn't go to the doctor because i have no insurance but i did this time and the doc did very little she gave me naproxen did nothing she then gave me zomig but what is the sense if they only last 45 min. the med takes 30 min. to work vicoden seems to keep them at bay or at least deaddens the terrible pain tis cycle is waning though thank god or somebody!!!!
chris fluno <>
syracuse, ny USA
Saturday, August 26, 2000 at 11:23:20 (EDT)

Suffering for the past 23 years.
Mitch Gosha <>
Hurst, IL USA
Friday, August 25, 2000 at 22:55:08 (EDT)

Have had clusters for about the last six years. Like many of you I was first treated for sinus infection. I now take Imitrex injections and Imitrex pills. After two bouts this year, each lasting two months, my doctor put me on Verapamil. Imitrex works well for me but I feel it masks the headaches and prolongs the cycle. Anyone else using Verapamil and Imitrex have any luck? I feel for anyone that has to bear this pain. It is by far the worst experience of my life. God bless all.
Lee Shultz <>
Milton, WI USA
Friday, August 25, 2000 at 21:07:36 (EDT)

I am sixteen years old and I have had severe Cluster Headachs since I was thirteen. I don't know why I get them but I take Imitrex shots and they help.
Alisha Kienlen <>
Greeley, CO USA
Friday, August 25, 2000 at 17:13:07 (EDT)

I do not have ch, thank goodness, because after reading some of the things you all wrote to describe it...I really feel for you. I do have tmj-it stands for temple mandible joint. It is to do with the joints in your jaw. It is very painful and causes migraines, and even though I thought it was the worse pain I had felt in all of my 23 yrs., it sounds as though ch is much worse. If anyone out there has tmj or knows someone who does, please send me an e-mail and tell me about it and how you deal with it.
tigger <>
tn USA
Friday, August 25, 2000 at 15:52:50 (EDT)

I'm fifty years old, had CH's for the past fourteen years, maybe more (had some bouts that I suspect were CH's but didn't know it. Tried nearly everything. I just started my new cluster last week after a year and a half of peace. In my personal life I've never met anyone face to face who has CH's, so I'm eager to meet people on the net who understand where I'm coming from. I'd love to share some of my positive experiences regarding relief strategies, and to hear how others managed to survive this curse. Anyway, I'm glad to be aboard.
Dean B
Chambersburg, PA USA
Thursday, August 24, 2000 at 22:56:41 (EDT)

I have suffered for over 15 years with CH. I know what all of you are going though. Mine are a seasonal thing, mostly in the summer lasting for a month with 4-6 attacks per day! It can drain a person. This only happens once a year then it starts all over again. The things that work for me is Imatrex 100 mg & Apo-Predisone 40 mg daily nothing else. I hope some of this info helps someone out there & take it easy. Thanks!!!
Terry Martin <>
Morinville, AB Canada
Thursday, August 24, 2000 at 21:28:29 (EDT)

My dr is testing me for cluster headaches. I go for a cat scan in 3 weeks. He said what i describe was typical signs of there headaches. He also started me on some medicine to see if it helps. The pain is horrible and it always happens at the same time every night. All i can do is hold my head and sit up when i have them.
S. Dockery <>
Kingsport, Tn USA
Thursday, August 24, 2000 at 20:34:38 (EDT)

Eighteen years ago I experienced my episode with CH's and it scared the H..l out of me, didn't know what was happening. I had my wife take me to the hospital, which was of little use, they refered me to a nurologist who diagnosed my symptoms as being CH, but he couldn't seem to find a means to break the cycle. After several months and daily occurrences I was refered to another nurologist who scheduled various test, I suppose to rule out other possible causes, and prescribed a combination of predisone and lithium. For me it worked wonders, I felt like a new person in a very short time, although, the CH's eventually returned, another 10 day precsription of the P & L again broke the cycle. The remission periods for me have ranged from about 4 months to 3 years (the latter was the most recent period without CH's. Currently, I have a primary care physican, that doesn't wish to address the problem himself and recommends I see a psyciatrist, I think I need a different PCP. Best of luck to all of you that are surrering from CH, they are somthing not to wish on anyone.
G Foster <>
Ft Laud, FL USA
Wednesday, August 23, 2000 at 19:38:39 (EDT)

I found this site yesterday and signed in but came back today to keep on reading how much all of us have in common - regardless of geographical location. I have had Ch for almost 24 years now and have lots of experience with CH Meds.Although none has freed me yet - (I was a test subject when Glaxo brought Imitrex to Canada years ago,(and got 20 injections for FREE). I certainly DO NOT recommend this but I have on occasion had 4 (yes FOUR) injections in a 24 hr period ( the rebound was Inf***ingcredible but I did abort 4 of the 6 attacks that day and I lived to dance another day. I have also had 4 Imitrex nasal sprays with no adverse effects ( except the heart palps - but hey even death could be better than this ) Again I certainly would NOT recommend this, but thought I would share this. Peace to all who dance with the Beast
Tim Cochrane <>
Brampton , ON Canada
Wednesday, August 23, 2000 at 15:02:38 (EDT) would be great to talk to someone who actually understands cluster headaches........
Candy Perkins <>
Cedarville, MI USA
Wednesday, August 23, 2000 at 10:18:46 (EDT)

What a relief to find this board! While friends and family are sympathetic I know that many of them feel I'm being a bit over-the-top when I try to describe my pain. I've been suffering with episodic clusters for twenty-five years. Initially I'd get them yearly in either the fall or spring, sometimes both. Now the bouts have decreased to every few years. The first doctor I saw about them said they were sinus headaches (due to the pain in my eye and nose). He was sure I was mistaken when I insisted it wasn't a "mask-like" pain but strictly on my right side. I'd wake from a deep sleep in blinding pain, crying and screaming -- very awkward when living in the dorms. When I'd get them at home my mother would insist I was bringing them on by the crying and screaming not the other way around. She'd tell me to "be quiet. There are people here trying to sleep." So for years I would take massive doses of sinus medication wondering why it wasn't working AND thinking I was being wimpy and weak. When I got married my husband finally suggested I go see an ENT to find out what was wrong with my sinuses. I did and the only thing wrong with them was that they were completely dried out due to all the medications I was taking. Now I was convinced I had a slow growing brain tumor and very trepidaciously brought up the subject to my husband's internists. He had me go in for an MRI which, of course, showed nothing like a tumor. He then interviewed me and, for the first time, I was able to talk about the stabbing pain in my eye, the feeling that my skull would crack open at any minute, the conviction that the next headache would kill me and he nodded and UNDERSTOOD! This was the first time I'd ever heard of cluster headaches. He then sent me to a neurologist who prescribed cafergot. That worked beautifully that first year but was completely ineffective the next go-round. There have been cluster periods where coffee would work great (I'd drink a whole pot and go back to sleep) other times it was ice. I've never used Imitrex or any other prescription medications -- never knew about them until recently. I did go to an accupuncturist about ten years ago. That was the most effective treatment ever. That particular cluster period ended after only two weeks (up until then they'd lasted 6 to 8 weeks) and they came afterwards every other year instead of every year. This cluster period has been the mildest yet. I had one, then nothing for three nights, then four nights of pain, then one night of relief. Tonight I had what I guess was a shadow -- it came at midnight instead of 3:30 a.m. and was pretty mild, I'd say a 5 on the Kip scale. I took 4 Nuprin (very effective for this cluster period) and now I'm a little nervous about going back to sleep. What if I get a real attack at 3:30? What do I do? I'm praying I sleep through the night. Somehow writing this and knowing someone reading this will really know what I'm talking about is helping me to relax. Sorry to ramble but it's just such a relief to know I'm truly not alone. Take care all...
Marsha <>
Valley Glen, CA USA
Wednesday, August 23, 2000 at 04:33:14 (EDT)

CANDIDA. I have been a sufferer for 30 years and have been determined to find an answer. I cannot accept that I suffer this PAIN without there being an explanation - just like everyone else, no doubt! Two years ago however, I gave up, but on visiting a Psycic Reader, I was told to resume my rearch because I would find an answer to my pain - PLEASE DON'T THINK I'M NUTS!! Among the many fields that I have entered to find an answer, I found a Naturpath who was determined to help, but to NO AVAIL!! However he contacted me and asked me to visit him urgently. He had recently been to a Seminar in regards to Snoring and Candida and learnt that Candida (too much yeast in the body caused many many problems) After a blood test he discovered that I am loaded with Candida and is so sure that this is the problem. On driving home from my visit it suddenly hit me. Perhaps this is the reason why even the samllest amount of alcohol can bring on an attack!!! Alcohol is loaded with YEAST - could this be an answer as to why Alcohol brings on an attach? There are many books on Candida and Allergies and Viruses - the one I have found to be very informative is "IT COULD BE ALLERGY AND IT CAN BE CURED". I also want to add that the Psycic said that my pain could be caused by a Virus - and when I read about the damage Candida does, it all made sense to me. Of course we all have an amount of Candida in our bodies, but is a diet of White flour, sugar and yeast (which is in so much of our food) that causes the danger - AND IT IS DANGER - to our health in many ways. I would love to hear from anyone who has a Candida test done and is "positive" - Can we keep off these food types and find an answer?
Christine <>
Wednesday, August 23, 2000 at 04:11:50 (EDT)

I am 46 year old suffer of C CH's for 13 years. Like many befor me I have tried just about everthing avalible in the US, to little help. Imitrex is the best thing I've found to deal with the physical pain and a very loving and understanding family for support. I am grateful for that. It is unbelievable what our families go through with us. Even with this support I felt alone, until I found this site. I have learned a lot in the past few days that help. One thing I find that helps is to kool off my body as soon as I sense an attack, especially my feet. I stand on concrete that is kool but not freezing. this has aborted many attacks for me. If anyone needs to talk I would be glad to share my experience and hope with you. God help us who suffer from this beast.
Charles Wheeler <>
Bath, ME USA
Tuesday, August 22, 2000 at 23:01:15 (EDT)

Two nights ago I had my first beer in 6 weeks, and although a bit of an uneasy twinge, no attack. Last night I slept for over 5 hours for the first time in 6 weeks, and was NOT awakened with a headache. You seasoned clusterheads know what this means.....this cycle is over. Good riddance. This was my 6th episode in 12 years (started when I was 20). My last remission was almost three years....damn, almost forgot all about them. Almost. What I will always remember about this particular cycle is discovering the CH website and empowering myself with more medical information, personal testimonies on treatments, etc. than I ever had before. I am indebted to the folks who created, maintain or simply post to this site. I also want to thank Dr. Greg and Dr. Goadsby (if they happen to read this!). I have learned so much, and although that did not stop the pain it made me feel a little less "stigmatized". Because like many of you, I always thought these things were more a result of something I was doing. Yet over the years I tried everything - quit smoking, changed eating habits, exercise, accupuncture, relaxation, visualization - you name it, I tried it. Nothing changed. And now I have a better idea as to why. So now when the subject comes up with friends, I just refer them to this site....and try not to get too upset with the well-meaning but off-base comments like "maybe you shouldn't drink coffee..." or whatever. Anyway, I am particularly fascinated with the head trauma link described in the website. This fits my history exactly. But I know most of you did not get knocked in the head. So maybe something else as well. I guess I have even more questions in a sense. But indeed a good piece of advice is to just worry about dealing with the pain. And this time, thanks to my drug plan, I was able to go on meds for the first time. I used Imitrex nasal and found it aborted the attack w/in 10 mins. about 75% of the time. Yes, some nasty side effects - drowsiness (how ironic, since I wouldn't want to fall asleep!), rebounds, dizziness - but I didn't mind. Anything to lessen the pain. I wouldn't even have asked my doctor for Imitrex if it wasn't for the testimonies on this site. I also got a script for O2, but only need to fill now. Maybe next time I'll try that as well....seems safest. With regard to Imitrex, I found that I had to be strategic about when to use my 2 doses/day quota. I usually tried to get through the day w/out so that I had two for night, when I REALLY needed it. It's kinda weird how I can just sense what kind of attack it will be (maybe a shadow, maybe only a 3 or 4, or maybe a 8 or 9, etc.). I'm sure you can empathize. I realize everyone is different of course, but this is what worked for me. Also, I will second the fellow from UK who uses hot tea on the gums. Hot showers also helped at least in allowing the occasional lull in pain, if only for a few seconds. I also tried the hyperventilation idea - seemed to help delay the attack, but then again I only tried it for the day attacks (i.e. they might have been shadows anyway). If it was night and/or a bad one, I always turned to Imitrex. I now have a pyramid of empty viles I have constructed in honour of the Beast's departure. So that's my story. Once again, this site is amazing. Everyone should do Dr. Greg's survey if they have not already. I'm going to stay in touch with the site in this remission, try to live healthy (not interested in Vermil or Lithium BTW) and hope for the best. Folks might be interested to know that I told my doctor about this site and she actually learned a lot from it. We both sat down and could talk about options. Other doctors in the past had nowhere near the insight. She told me yesterday that she learned a lot from it and will help her w/ other CH patients (as rare as they be). I was seeing her yesterday for vacine shots (going to Asia!!)...she said before one of them "this might be a little painful"....then we both sort of realized the humour of those words and laughed out loud. All the best to you all and I hope you find whatever means to endure and enjoy the pain free days. :)
Keith Symington <>
Vancouver, BC CANADA
Tuesday, August 22, 2000 at 19:10:20 (EDT)

sarah vasquez <she>
far Rockaway, ny USA
Tuesday, August 22, 2000 at 12:57:58 (EDT)

I have suffered for 24 of my 34 years of life. I NEVER thought that there was actually others in this boat. (even though my Dr. tells me that there are in fact lots of us CH people around. This site is a welcome addition to the WWW, as I have found lots of sites, but not much help or NEW info. Yours is very different. I like how you put the terms IE - the dance - (my wife thinks I'm an idiot when this happens but she can't (or won't) ever understand that when "HE" visits me it offers me even a modicum of respite from the pain. Peace to all of us, who've come to know the Beast.
BlackDog <>
Brampton, ON Canada
Tuesday, August 22, 2000 at 12:46:06 (EDT)

Hello everyone. I have been a CH sufferer for a long time. I am 29 years old but remember having these headaches as early as 5 years old. I have 2 small children and recently, my headaches have increased and are getting debilitating. It's nice to know there are people out there who understand how painful CHs can be. Jane
Jane <>
Ypsilanti, MI USA
Tuesday, August 22, 2000 at 11:47:22 (EDT)

Know what your going through, during headache season I spend more time in my room or emergency room than I do at work or with my family.
Linda Vigo <>
Wichita, Ks. USA
Tuesday, August 22, 2000 at 11:46:49 (EDT)

Glad to find this site! Now I have some thing to take to my doctor.
Eric Schmit <>
Dubuque, Iowa USA
Tuesday, August 22, 2000 at 11:29:33 (EDT)

I am 45 years old and have had cluster headachers for about 15 years. I have had an MRI and an EEG but nothing showed up as being wrong. I was sent to Charring Cross Hospital in London to see a specialist but after only 2 mins with him he said there was nothing he could do and to go back to my GP. I have read that many people associate cluster headaches with migraine but I can see little connection between the two. I do NOT get relief from laying in a darkened room, on the contrary that only makes it worse. I have to walk around and prefer to have company if it is at all possible because I get frightened of the intense pain and feel suicidal. I get these headaches for about 4 days at a time, each headache lasting about 4 hours with an hours slight relief before it starts again. This happens every 3 - 6 weeks. I have a 'headache hat' which helps hold my head together as it feels tight and warm. I take Imigran, Solpadol and Neurofen and I also use pure oxygen at 7lLtrs a min for approx 15 mins at a time. I find that the start of the cluster usually wakes me during the early hours of the morning and I know then that I am going to be bad for the next few days. One of the main problems that I have besides the headache are the after effects of the medication which leaves me feeling almost drunk for about 2 days. I also find that the sympathy of my employers and family is running low as it happens so often. Can anyone else relate to this? Any other ideas for self help? Lorraine
Lorraine <>
Sussex, UK
Monday, August 21, 2000 at 17:07:25 (EDT)

Any other sufferers in the UK?
Lorraine <>
Sussex, UK
Monday, August 21, 2000 at 16:30:43 (EDT)

I knew that there had to be other people out there that suffered from this like I have... I am a 26 year old male and I had my first serious headache about...mmm...3 or 4 years ago. I couldn't believe the pain. Now they come and go...every couple months (3-8) for a couple weeks (1-2). The pain...can you folks believe the pain that we get? This is what it is like for me during a really bad one... First a dull ache behind my left eye and as soon as I notice that, dread. Fear. Not wanting it to happen but knowing I am powerless to stop it. I go for whatever OTC pain relievers I can find. Sometimes it seems they work, sometimes the headache burns on through. I am so used to it now I can handle sitting comfortably for a while. I try to stay around people, keep doing whatever I was doing, just keep positive in general. But sometimes I can't will it away. It just builds. Now I have to hide, get away from everything. Seek comfort somehow and somewhere. Be alone. I curl up, take a pillow, and wrap it around me head. Now I can feel the waves pulsing. I want it dark. I want it cold. I want the pain to STOP. I move my body constantly trying to find a way to be comfortable...maybe find that "magical" position that will stop the pain. I push on my eye, I squeeze my head. I talk to myself, I talk to God, I talk to my head... Tears pour out of my left eye. And then that wonderful beautiful feeling. Oh the pain is going away! It is leaving me! Is it? PLEASE! I cringe and cry and just hope that this second, that this very MOMENT is the peak...and it will only be getting better now. This has been my worst week of CH ever. I can't work. I can barely think. Such mixed feelings of joy and dread. Joy that I am pain free right now. Dread that it could strike again any moment. Ugh. This SUCKS! 8^) Damn I am so happy I can talk (write?) about this with people who understand. Thank God for small miracles huh? D. Neil Crawford
Neil Crawford <>
Lafayette, CA USA
Monday, August 21, 2000 at 14:48:38 (EDT)

Hi. Name here is Steve, and I have been a suffer of clusters since 1994, about 6 years. Problem is mine never go away for a vacation, they are here 24/7. Just found that by smoking a cigar, I get moderate relief. Figure that one. Anyway, first time here and it's nice to know we arn't alone
Steve <pixxharley47>
Jacksonville, Fl USA
Monday, August 21, 2000 at 13:15:07 (EDT)

Just wanted to say hello to everyone.
Tammy Courtney <>
Parksville, B.C. Canada
Monday, August 21, 2000 at 12:03:27 (EDT)

i have suffered with ch for about 20 years now, it is great to have this site. i have been pain free for 16 months but the demon is back. i have a soft spot for all of us nobody really understands the pain we suffer, our loved ones can only support us in our time of the dance. god bless and help us all
tony <>
mn USA
Sunday, August 20, 2000 at 20:53:10 (EDT)

I have been a CH sufferer for more than 15 years and although I would not wish the pain I have experienced upon my worst enemy, it somehow feels good to know that I am not alone. Thank You!!!
Edward Vander Pol <>
Chino, CA USA
Sunday, August 20, 2000 at 11:14:48 (EDT)

I don't know what I have. These headaches started 3 years ago, at age 43, around the time I had surgery for a torn retina in the left eye. The eye surgeon insists there is no relation. The dentist says it's not dental. The MD xrayed the sinuses and saw no problem. My headaches don't really fit migraine or clusters either. One year ago I was put on hormones and then was able to pretty well tell they are premenstrual. But the headaches are always around my left eye. The pain rotates over the cheekbone, eye, and eyebrow. It ebbs and flows, but is not the intense pain in short bursts I see described as cluster. They are fairly constant and last 2-3 days. Nothing I have had over the counter or doctor prescribed relieves them at all. I am just thankful they are not severe. I am miserable but am able to function, and do know that after 3 days they will go away until the next month or so.
Lee <>
Saturday, August 19, 2000 at 23:04:41 (EDT)

for 20 years I've felt so alone, not even drs sem to understand. I'm very excited abiut this site.
rodger griffin <>
waco, tx USA
Saturday, August 19, 2000 at 23:01:24 (EDT)

my cluster headaches started in 1981.a dozen doctors and as many years i found a dr. that prescribed procardia, which is primarily a hypertension drug. end of headaches! hope this helps someone.
Saturday, August 19, 2000 at 11:47:53 (EDT)

I'm sitting here crying because I cannot believe I'm talking to someone who even might have the least bit of insight to my pain. Thank you whoever you are. Just sitting here typing this helps. I happy to have this sight but in a way it hurts my heart to think there are others that hurt as much as I do. I'm sorry about your pain and I'll pray for you too!!
Friday, August 18, 2000 at 23:27:07 (EDT)

Nichole (SheRa) ;)
parkersburg, wv USA
Thursday, August 17, 2000 at 14:16:12 (EDT)

Im so glad to still be here.
Jody montgomery <boxer>
Trinity, Al USA
Thursday, August 17, 2000 at 12:07:29 (EDT)

CH sufferer for years, trying to find something to help!
Troy Blackwell <>
Ocala, FL USA
Thursday, August 17, 2000 at 10:06:28 (EDT)

Hello, I am new to the website but have been a cluster headache sufferer for 25 years. I am so grateful for this site and hope to make contact with others. By the way I find that scolding hot tea without milk on my gum helps!
Frank Wilson <>
Bournemouth, Dorset England
Wednesday, August 16, 2000 at 09:47:13 (EDT)

Hello all I am 39 and have been sufering from CH for 20 years I have three children and still married pretty strong women to put up with CH for 19 year I think but looking forward to talking to all of you.
Wednesday, August 16, 2000 at 05:01:33 (EDT)

I've been suffering with CH for ten years now. What I can't understand is why most doctors treat you like it's nothing. I'm glad to know I'm not alone anymore. I think that my family feels that the headache stuff is getting old. They can't even begin to understand the pain. When it's really bad my 12 year old daughter has to monitor the medicine. Her and my 14 year old son have been taking care of me for years. I've been taking care of my 75 year old father who is mentally ill and has emphysema. I also care for my sister who has reoccuring breast cancer. There's no time for cluster headaches but that doesn't stop them. I wish it would just stop. I've reached that point where you feel that you can't take it any more-but we do. Sorry to sound so negative right now but I have no meds except ibuprofen. We must try to remain positive. Barbara
Barbara <>
Melbourne, FL USA
Tuesday, August 15, 2000 at 22:00:47 (EDT)

Just stopped by to say hello. I have ben here many times before, mostly when I am in my clusters. I have been free since March. i decided this time to continue on a small dose of verapimil...hopefully this is what is keeping them away. Saw the convention great that must of been but looking at some of the pictures, there seemed to be some eye droopings ...hope you all were able to have a good time...HEY maybe the east coast next year?!!
mike <>
Tuesday, August 15, 2000 at 21:01:01 (EDT)

Hi, i hope someone reads this and gets back to me with some kind of answer. I have been suffering with cluster headaches on and off now for about 12 years. I'm a wife and mother of two boys 9,11. I had my tubes tied about 7 years ago, and i recently decided to have another baby. So i flew off to louisville,Ky. and had a tublar reversal done. Two weeks after the operation the headaches started again. So i guess my question is has anybody out there ever been in this situation. If so was there any medications that you could be on while you were pregnant. If you can help please get back to me as soon as possible.
Brenda L Phillips <>
Sheffield, Ma. USA
Tuesday, August 15, 2000 at 13:25:25 (EDT)

Finally people that know how i feel!!! Im 40 yrs old and have had CH'S for 19 yrs now.Ive been on so many meds and none have workrd so far, right now im using oxygen and Fioricet and it hasnt helped yet.I have seen many types of different drugs on here that i will be asking my Dr about. Take care everyone and godbless
suzyb <>
Kankakee, Ill USA
Tuesday, August 15, 2000 at 05:19:39 (EDT)

I have just been diagnosed as a sufferer of cluster headaches but my doctor could give me very little information about this condition
tracey clayton <>
Southport, UK
Monday, August 14, 2000 at 06:45:55 (EDT)

Thanks for the help, from a caring husband.
Bomaderry, Australia
Monday, August 14, 2000 at 05:52:59 (EDT)

Hi, I'm writing for my husband Dave who has suffered now for over 12 years. I have information no one else seems to talk about in their postings, so please read on. He was diagnosed with cluster migraine headaches as he seems to exhibit both symptoms. We have only been married three years so I have only limited experience with these devils but after his first episode I got educated really fast. My first experience with him lasted 6 weeks. He refused to go to the hospital because he had no insurance and knew it would become another uncollected bill on his credit report that reads nothing but hospital bills for these monsters. Then one day I came home and found him in the bottom of my closet (the only room without any windows so he could be in complete darkness) with his grandfather's pistol. Fortunately it was not loaded as he was holding it to his head pulling the trigger again and again. I cried and asked him what he was doing and he said he would imagine that it was loaded and prayed that with each click maybe the headache would go away. I had never seen anyone having a migraine let alone clusters of them and my heart broke when he told me then that this happens every year. We had only been married for two months at that point and I thought my god, what was our lives going to be like, what had I let myself in for. I had just become a massage therapist after battling cancer that I had developed on the job as a legal secretary (dump that old green screen computer if you have it) so I began to read every book I could find that referred to migraines, I had not even heard of the term cluster headaches yet. I had read so much I was telling the neurologists things he had not even heard of yet and he was considered the specialist at University of San Francisco Medical School. The fist thing he put Dave on was a steroid. The trick was we could not buy the generic, it did not work, and he had to start with nine pills for two days, eight for two days, seven, etc., etc. until gone. This broke the cycle. Dave was having 6 to 8 headaches a day, they would come at the same time everyday but worsening degrees until he was on the medication. Without medication Dave is at high risk of having a stroke so we will always be looking for the new discoveries. He is only 29 years old, we have a one year old I am 6 months pregnant with our second child. He has so much to live for now I refuse to let this get the best of us. Now I will tell you about our medication history. 3 grains of morphine works for Dave, frightening amount, huh? But as soon as this has worn off the headache was back. Ergot, vicodine, and any over the counter drugs would not touch any of his pain. The next medication to work was a steroid, I am sorry I cannot remember the very one but he would have to take 8 the first day, 8 the next, 7 the next, 7 the next, etc. until it came down to 1 a day. The trick was NOT TO BUY THE GENERIC, generics don't work. The difficulties are the liver damage these can cause let alone the wonderful demeanor Dave would develop on top of his already 'leave me alone and I mean it' attitude with just the regular torturous pain, the physical and emotional drain the clusters of headaches would normally give him. But the damned steroids would break the cycle. This last year we found a god send of a doctor (who unfortunately retired this year and we cannot find her) she specialized in migraines and worked miracles with the oxygen therapy and believe it or not a low dosage/short term acting lithium. Lithium Carbonate at 300mg 3 times a day has so far done its job. She said for those with known seasonal clusters, they can start the lithium before hand and actually prevent the onset. This miracle drug was actually found by accident, they were trying to find a med for epileptic patients and instead found it worked for the cluster/migraine crowd. We were told that there is a small gland that sits in the middle of the brain that tells the body how much hormone to produce. This is also the key to apparently why 4 out of 5 migraine sufferers are women. Dave's migraines are triggered by stress as far as we can tell. But apparently, since this has never ran in his family history as a medical problem, there is a strong possibility that his history of over 8 concussions in his life probably created scar tissue on his brain that is suseptible to the cluster/migraine torture. Somehow this same gland also regulate the messages of the eye, ear, and smell senses to function at proper levels instead of the profound screwed up messeges such as the tunnel blindness in Dave's right eye, how regular sounds become like 20 brass band pieces playing directly into one ear and the slightest smell of anything creates nausea and vomiting immediately. The lithium is a short term acting kind. The patients who take this for psychological reasons take a kind that will stay in your system for 30 days. This low level, short term lithium would be completely out of your system within 24 hours of stopping the medication, so any side effects seem tollerable because one can see the end of the tunnel. This bout hit us a little by surprise, but I put Dave on the lithium immediately. He had one headache the first day, two the next, three the next, but then only a threat on the fourth day, no headache was produced. Also during this cluster period I have read that people can have an allergic food, or obviously alcohol, triggering reaction when they have never shown an allergic reaction outside of the cluster period. In other words, one could think they are the lucky ones who aren't allergic to milk, but in actuality during the cluster period, milk could be adding to the severity of the next headache. Our policy has been during the cluster period, no alcohol, milk, chocolate, cigarettes, eggs, anything we think of as possible culperates are allowed. Oh yeah, one last helpful note: get massages around the axis vertebrae, that is the very top one going into the scull and the occipital ridge area. These are the key areas of the head that can trigger cluster/migraine torture. I hope a lot of people who I have read their entries find this one. It seems to answer a number of the sufferes pleas for help. Best wishes to you all, I am sorry you have to go through this unbelievable nightmare, may you all find something that works for each one of you. --Alana
Alana & Dave Masson <>
Renton, WA USA
Monday, August 14, 2000 at 02:42:14 (EDT)

Hi, I am now 24 years old and I have been suffering with CH for aprox. 2 months now. I am a single mother with a 5 year old son. I have been visiting the CH message board for about a month and everyone has been VERY helpful. I am taking Iitrex and Midrain to help with the pain. I am trying to learn as much as I can from everyone on this board. I am hoping that they will go away soon because I am becomming less and les patient with them. I was first told that I had a sinus infection and when I was writhing in pain one day my friend made me go to the Dr and she came with me. She told him that I am simly not normal and she was concerned with the amount of OTC meds I was taking. 2-3 different types every 2 hours and still no relief. Finally my Dr said cluster, that night I went on the internet and found my Cluster headache home. Thank you to all that have helped me. I am truly glad that I have found this bunch of people.
Shannon Pearman <>
Birmingham, AL USA
Sunday, August 13, 2000 at 20:46:12 (EDT)

I have to say I'm not a cluster headache sufferer. My husband is. For years, I've tried to understand what he's going through, but I'll be honest, it is really hard when you've never experienced them. I've had migraines but even they are (or must be as its still hard to conceive) not as harsh or severe. I just still can't comprehend them, but this site has helped me to get a better understanding of his problems. He's at the point of being po'd at the doctor and refuses to go back, as the doctor is loading him up with narcotics. I don't like this, he's taking more and more of them to help get relief. There has GOT to be another answer besides addicting drugs. So...hopefully he can get some ideas here. I'd like to see him change doctors if the doctor doesn't seem to help him. I would just like to see him get relief and have my "old" husband back. I haven't "seen" him in quite awhile. LOL
Linda Scott <>
Sterling Heights, MI USA
Sunday, August 13, 2000 at 13:51:31 (EDT)

Hi!I have sufferred with cluster headaches since I was 8 and I'm 31 now.I have left a message before but it was a couple of years ago and it has been awhile since I have been on this site.Like I said I have sufferred for 23 years,have had numerous surgeries including a vegotomy and antrectomy,where they took a third of my stomach and split the vegus nerve,I also have had a hysterectomy at age 26.About 2 years ago I went chronic.I get my headaches every 12 hours and they last anywhere from 1-8 hours.I am taking Morphine,Demeral,and Darvecet for the pain.If I can be of help to anyone please email me or put a post up.If you just want to chat I'm a great listener.Hope to talk to you soon.Pain free days to you all.
Dawn Johnson <>
St.Paul, MN USA
Sunday, August 13, 2000 at 03:05:03 (EDT)

Back again - last entry was a bit of a mess - sorry - that's what happens when you try to type when having an attack - you come across as a complete plonker. I was telling everyone about the treatment I am receiving in the UK - and it is working to a much better degree. The pain still comes through, but at a more managable level. Presently I am taking for my 6 weekly cycle - 6 x Prednisolone 5mg pills ( reduces inflammation )per day for 2 weeks and then reduce by 1 pill every 4 days until the course is complete. plus Naramig 2.5mg Migrain pill (naratriptan hydrochloride) x 2 per day - very powerful and similar to Imigran injections etc., plus Kapake x 8 per day - these are a powerful paracetomol pill - used in conjunction with the Naramig - ie bulster up the dose. Like I said the pain does come through but to a lesser degree. Down side is that the combination makes you feel very lethargic and remote - sort of numb. Ever wondered what us sufferers have in common - what causes these attacks. Wether God just hates us? How about this for food for thought - could it be that we as individuals fail to either vent our stress or toxins accumilated in our bodies over the months - and this is our bodies way of purging it's self. Probably bollocks really! just a guess All the best to everyone - It's good to be in a family Guy
Guy Copperthwaite <>
Bristol, uk
Saturday, August 12, 2000 at 18:20:21 (EDT)

I only started getting migraines after moving from the US to Australia 20 years ago. For the first few years I took heavy pain killers and crashed out for 12> hours with the doors and curtains closed. I missed a lot of time with my young sons during this time. I started with Imigran about 8 years ago. I find it not only relieves the pain but makes me feel as though I have just woken from a good nights sleep. Within 45 minutes of taking the drug I usually get pleasant little tingling sensations running up my upper back and the back of my neck. I can just feel the pain being 'washed' away. I feel refreshed and like a new man. Often, however, during a cluster the pain will return when the drug wears off. Sometimes this pain will again develop into a M@#%$^*N!! Unfortunately, I am a slave to these little tiny pills and am almost at the stage where I panic if I run out. I must keep them in my wallet or else I begin to become irritable. I would love to get off of this treadmill. I usually purchase 2 X Imagran in 100mg tablets for ~$50.00 aust. and break them in half and have success with the 50mg tablet. In the near future I intend to experiment with breaking 50mg tablets into 25mgs and try them. Wish me luck. I have stopped eating chocolate, drinking beer & marshmallows. I know that my headaches are partially stress related so I have begun to try to relax a lot more. Thats all I have to say about that:)
Richard Teague <>
Adelaide, SA Australia
Saturday, August 12, 2000 at 07:08:05 (EDT)

Episodic clusters...God's way of showing you that you can stand some really heavy duty pain. And the you have a biologic clock (every two years in August). And that your family members are as heroic as you are for putting up with the shit.
Digby Morrow <>
Salem, Or USA
Saturday, August 12, 2000 at 02:51:50 (EDT)

Hello my brother-in-law has about 3 years clusterheadaches. I search persons in Switzerland, Austria or Germany with the same problem. Please help us.....!!!
Patricia <>
Rüti, Switzerland
Friday, August 11, 2000 at 11:01:04 (EDT)

Oxygen Miracle Cure My name is Vaughan Rademeyer, I am a 47 years old, I live in East London, South Africa. I have been getting cluster headaches for the last 27 years. For those not familiar with this term, it is an extremely intense headache that recurs from once to a number of times a day during an episode. An episode could last anything from a few weeks to some months. Intervals between episodes are usually also anything between a few months to a year or two. The headaches that I experienced were an intense pain in my left temple that would come on with a warning of a minute or two and would last up to about three hours. The pain was so severe that I could not keep still; it felt as though somebody was piercing my skull with knife and then twisting it around. Even when a headache came on while I was asleep, I could not remain in bed and I would pace around the house until it eased off. During an episode I could have up to 6 Headaches a day. The early episodes were of short duration, usually only one or two weeks but over the past few years they have lasted for up to 18 months. I had managed to control the headaches by taking 2mg of ergotamine with pain killers at the onset of a headache but if not taken in time, such as when I was asleep, no amount of medication could ease the pain. I have tried using various anti-depressants with some initial success in stopping an episode but I found that I would then have to use a different type of anti-depressant to clear the next episode. Eventually I found that anti-depressants would not work at all. I then tried beta-blockers, which seemed to amplify the headaches even more. I had scans and an angiogram done but these results were all negative. After having an episode lasting 18 months I decided to take stock of my life. I stopped drinking coffee, tea and ate only natural food without additives. I had long since given up alcohol. I became strictly vegetarian (almost vegan). One month after this lifestyle change, the headaches stopped and I thought I had found the cure at last. A few months later the headaches returned. In November 1999 I was really desperate as I was in the middle of an episode that had lasted for 18 months. I was almost on the point of not being able to do my job anymore. The headaches were particularly severe and I was taking about 70mg of ergotamine a week, which is way above the recommended dosage of 12mg per week. Anybody who has experienced these headaches however will know that one will do almost anything to stop the pain. I read an article on the net posted by Paul Borneo who had used oxygen successfully so I hired an oxygen cylinder the next day. That night I had headaches starting at two hourly intervals, which I managed to control by breathing pure oxygen for 15 minutes. I installed another oxygen cylinder at my office and after 3 days was free of clusters. I could not believe the dramatic turnaround in my health. I then had to deal with the rebound headache and nausea from medication withdrawal, which was not pleasant but fortunately less severe than the clusters. I have now gone 8 months without a cluster. I am still careful of what I eat and drink and have remained a vegetarian, as I believe in a gentler lifestyle. I no longer live in fear of the next cluster headache, as I am confident that should they recur, oxygen will do it again for me.
Vaughan Rademeyer <>
East London, South Africa
Thursday, August 10, 2000 at 13:49:59 (EDT)

I've been getting the damned things for over 20 years. I don't like any doctors (except my own) i am now addicted to demerol and stadol, and go the the ER at least 4 times a year for morphine. I keep finding excuses for not killing myself, but they are running short. I am 50 years old and my clusters used to be episotic, but hve now become chronic. Nobody really understands the pain and i am just tired of the whole thing.
Jack Moore <>
san francisco, ca USA
Thursday, August 10, 2000 at 01:24:02 (EDT)

Don't know where to begin. I started having migranes when I was 5 years old. I am now 35 years old. The migranes are getting worse as i get older. They are also lasting alot longer than they use to. I've been having this one for 2 months. I've been to doctor after doctor. None of them have been able to help. I recently went to the University Hospital in Jackson, Mississippi. They can me two different kinds of medicine through an IV called Toradol and Compazine which helped for a few days then I'm back at square one with the migrane again. They are sending me to have test done. The doctor in the emergency says that the migrane I have has the same symtoms os a stoke. That really scared me. Now they are sending me to Neurologist. Well I've also been the route. All they ever told me is that it was my nerves causing the migranes. Well I am not a nervous person, so I really can't see where they get that from. I am at the end of my rope with these migranes. The sharp pains that goes through my head gets to be unbareable at times. if there is anyone that can help me please feel free to e-mail me. My e-mail address is Thank you for having this site. maybe there is someone out there that knows what I'm going through and can give me some advice. Thanks again!! Anna A. LeBlanc
Anna A. LeBlanc <maemae36>
Houma, La USA
Thursday, August 10, 2000 at 00:00:13 (EDT)

28 yrs old. suffered chronic clusters for three years. Have not had a day without at least one cluster headache since october 97. Have tried all meds available (I think). Only one ever to work has been DHE 45. Started with the Migranal nasal sprays. They worked but were expensive as insurance covered only 4 nasal sprays a month and I was using upwards of 30. Expense out of my pocket was roughly $750 per month. (25 doses at $25 each). Now I have started using the sub-Q injections which seem to work very well. I also take caffiene pills once or twice a day which help when headaches feel like they want to start. Would do anything to get rid of these headaches!
Michael <>
Damascus, md USA
Wednesday, August 09, 2000 at 23:10:59 (EDT)

I actually started my own web page as I thought that I was a small minority. From seeing this web site I can now rest in the fact that there are other people in my situation. I am 35 years of age and have had Cluster Headaches since I was 13 years. i remember that first day vividly. Sitting on my bike talking to some school chums - and then wham - the pain. From there it went on for 6 weeks. Today I am suffering - and like most just wishing they would go away. Unfortunately it is inheirant in our family with me once per year at various times with a two week build up, two weeks of pure hell and then the two run down. my cycle in 1 hour attack every other hour. My brother ''Craig'' is 6 attacks per day for 16 weeks on and then 16 weeks off - poor sod. 4 years ago because of the concocktion of drugs, he tried to take his life. fortunately he has now followed the same route as me and followed a better of treatment - i.e only to be used at the time and not long term. Kerry my sister is 1.5 weeks per year and thankfully not as intense. After many tests and pills etc., I have now found a General Practitioner that gives a damn. For the second year I am using: Naramig - Migraine Tablets - 2 per day (2.5mg naratriptan hydrochloride) Sorry the pains to intense - I need to sign off now and finish this later bye
Guy Copperthwaite <>
Bristol, United Kingdom
Wednesday, August 09, 2000 at 17:13:28 (EDT)

How many other over 45 women are out there that suffer from chronic cluster headaches? How many people are having trouble with co-workers who look at you funny when you complain of having "just a headache?" Chow :0) Frances
Frances Johnson <>
Corpus Christi, TX USA
Tuesday, August 08, 2000 at 19:57:34 (EDT)

When I found this web site, all I could do was cry..I thought I was alone. thank you!
Tuesday, August 08, 2000 at 19:51:34 (EDT)

Well let me tell you what a relief it was to find this site... I have been getting ch since I was 13 years and I am now in my 39th year. I usually suffer in spring and fall. This past June ended a cluster, however to my surprise I just met with the demon about a week ago.... Let me tell you it has been so bad I am totally spent. This past Friday I started at 10:00am and went every two hrs until 8:00pm. I was afraid to go to bed because I knew the inevitable....I woke up out of sleep within one hour and found myself downstairs on the living room floor banging my head in tears. I am in no way new to the pain and I think my threshold is extremly high, but we never know what degree of pain he will bring..... I feel for each and every one of you out there! Anyone that would like to email me please feel free if you want to chat... I have been on 150mg of Verapamil for the past two years however it does not seem to be working this time.
Tuesday, August 08, 2000 at 16:46:15 (EDT)

This site is a godsend. My husband has been waking up from intense headaches at precisely 1:00 am works weeks at a time. He took the test and of questions 9-16, he only had one "No" answer. We'll be going to a Neurologistto check into cluster headaches. I can't believe we might actually be able to ease his pain. Thanks, Carin McKenna carin626@aik,cin
Carin McKenna <>
Fairless Hills, PA USA
Tuesday, August 08, 2000 at 15:55:34 (EDT)

I recently was diaginosed with migrane headaches and i have suffered pretty much all my life with headaches but the ones i have experienced the last 3 months were awful. looking for people and info.
Melissa DeNure <>
Belot, WI USA
Tuesday, August 08, 2000 at 15:33:21 (EDT)

I've been recently diagnosed with clusters, but I've been suffering for many years. I am a female victim and, as previously diagnosed as having sinus infections. But sinus treatments did not work. I was relieved to find out from my NEW doctor just what is wrong with me. I feel a little hopeless knowing there is no cause and no cure. But the treatments of pain medication and cold compresses sometimes gives me some relief. I also decided that I don't care if I look stupid pacing the floor, rocking myself back and forth, or banging my head on the wall. I'll try anything for relief!!! Thanks for this site, it's good to know other people understand.
L.A. <>
Queens, NY USA
Monday, August 07, 2000 at 15:32:25 (EDT) nice to find this web site.I have found so much useful advice and information on the net. I am new to the net.I am looking forward to getting onto a cluster chat if i can sort out the time difference. Clusters started again 2 weeks ago after a 5 yr remission. Had 4 yesterday and am understanably beside myself. Some good friends took my 3 yr old today and will have him for a few days. I am single mum and too unwell to look after him which I find pretty devastating to tell you the truth. I have tried some options i have read about on the net and nothing is working and today the doc. just gave me pethedine tablets to ease the pain. Very hard as there is noone to get me to hospital when I get my clusters and cannot leave my boy of course. I am 36 and this is my third bout of clusters. They usually last 2 months.I am sorry to see that so many others suffer too but am pleased to know through others' experiences and thoughts I am not going mad!I have had trouble logging onto chat room so if anyone has heard any new wonder treatment as of 4th Aug. 2000, please let me know at my hotmail address. Immigrin and oxygen not working....thanks and may you have a clear head!
Megan <>
auckland, New Zealand
Sunday, August 06, 2000 at 08:59:02 (EDT)

I'm 39 and have been a chronic CH suffer for 13 years now. I have have 2-4 attacks a night through the whole 13 years with only a couple 1 month breaks. My headaches occur as if by clock 1 hour after I go to sleep and last 1 to 2 hours before I can sleep agian for another hour and go through it all over again 3 or 4 times a night. No medicine as yet has worked and life goes on. I deal with the pain when it happens...ussually with a vibrator to toe head and neck, or ice or massaging my scalp. I wonder if my vibrator will some day shake the brain lose and end the pain for good. But I choose not to dwell on the pain when its gone its gone until it happens again I don't think avout it save for the chronic neck and shoulder muscle tension. I'm glad I found your site and am able to see I am not the only one dealing with this daily. one more note.. when they first started they lasted 8 hours at a time, so now I count myself lucky they are relatively shorter now. I was also glad to see that a few chronic sufferers are now periodic sufferers and it gives me something to look forward to as a possible respite in my golden years. (LOL) I'll check back occasionally to see whats up. Thanks again Robert.
Robert Power <>
San Antonio, TX USA
Saturday, August 05, 2000 at 13:17:53 (EDT)

just took my imtrex its 430 am. do you ever wonder if the imytrex will quit working.a scary thought for a guy almost 5yr.clean and sober. if i never see another drug it will be too soon
marc <>
or USA
Saturday, August 05, 2000 at 07:57:45 (EDT)

I'm realizing now how lucky I am... I take 50mg of amitriptyline a day, one in morning and one at night. It has turned the demon into a whisper!! I realize it must not be effective for many after not seeing it anywhere on the site. However, I'm wondering if there might be another name for it?? I am 30yrs. suffered for 10yrs. I travel alot, live half the year in India at over 7,000 feet. I've learned that the Indians are not very serious about taking care of the drugs there, I've found that the amitriptyline I get there can be low potency, due to what I believe to be the Indians letting the drugs sit in the incredible heat for very long periods of time. Other than that I have been absolutely ticked by the effectivness of the drug. I have just this summer began using 50mg, I started at 10mg and noticed a difference but not enough, then to 25mg better but still not good enough, then to 50mg and so far it's been great. However, I've just begun having problems with (getting a strong erection). I'm wondering if anyone has information on this drug causing this side-effect? I've read a bit about the drug and found some info about it causing problems with erection but would like to hear more. My heart goes out to you folks suffering cronic clusters with no treatment working. I can only try to empathize with your pain. Never Give Up, hope is only around the corner, it's never not there. Fight the demon!!! Chamb Meehan
Chamb Meehan <>
Fitchburg, Ma USA
Saturday, August 05, 2000 at 03:21:46 (EDT)

I have found relief and a bit of peace in finding this site, mainly for the fact that so many people have come together to share the misery, and offer help and solutions. It saddens me, however, to know that there are so many other people that suffer from these dreadful episodes that disrupt our lives.. I hope I can help you folks like you're helping me...
Jimmy <>
VA. Beach, VA USA
Saturday, August 05, 2000 at 00:09:09 (EDT)

When the throbbing starts, wrap some ice in a towel and press against the throbbing site. It does help me. The only thing that works to give me some relief immediately.
linda von pfahl <>
ashburn, va USA
Friday, August 04, 2000 at 21:59:21 (EDT)

this is the best site i've ever laid eyes on. i commend the thoughtful genius who implemented this. God bless you and keep you well. you're doing a fantasic service to all cluster "victims".
Friday, August 04, 2000 at 01:24:39 (EDT)

need information on sex drive and majior headaches with dizzyness even after the headache is gone?
denniswaite <denniswaite@yahoo>
pgh., pa. USA
Thursday, August 03, 2000 at 17:05:50 (EDT)

Well, I had been in remission since 1991. I was almost convinced that they were gone. I started getting headaches again the first week in June and am still going strong. My last cycle was almost 11 months long, 3-4 times a night. I have not found any relief so far. My doc has got me on almost everything they have any research on and nothing seems to be working. Oh, I go to University Headache Center in Lenola, NJ.
Bob Kennedy <>
Atco, NJ USA
Thursday, August 03, 2000 at 14:46:02 (EDT)

As a post script, i have been in remission for about 18 months now.
Oli Staunton <>
Birmingham, Uk
Thursday, August 03, 2000 at 11:25:13 (EDT)

A surprise to find a dedicated site. And to find other people that experience this weird, isolating thing.. It seems an unfortunate but common theme throughout the messages of medical ignorance and lack of effective treatment, of which I have encountered through my 12 year experience with cluster headaches. It is encouraging in a perverse kind of a way to find others have experimented with somewhat unusual methods of coping and alleviating the pain, feet in cold bath, bags of peas on the head. One effective abortive method I have found useful, following reading Oliver Sach's book and adapting a scenario, is to, at the first sign of an attack, is to start doing press ups.. doesn't always work and may look very unusual in public places but hey, what else can you do? Is there any research on the cyclical aspect of the attacks and why ? Not just seasonal but circadian and that. I'll stop waffling now, but also reassuaring to see a few British names... cheers
Oli Staunton <>
Birmingham, Uk
Thursday, August 03, 2000 at 11:21:40 (EDT)

I am the mother of a 12 year old who started suffering from intense headaches about 6-7 months ago. He just turned twelve last week. His doctor said they were migraines and prescribed Periactin, but it has no effect. We are going to a pediatric neurologist tomorrow and I am terrified they will find that it is more than just a headache. I can't stand to see my son hurt so badly. I can't understand why someone so young would have headaches such as these. If an adult can hardly stand them, how can a little boy?
Kelly <>
Crebshaw, MS USA
Thursday, August 03, 2000 at 02:04:45 (EDT)

I'm just coming off an 18-month remission, and I'm getting hit hard again. My new fiance is really upset, and I was so glad to find a site that had all this information in one place, just to show her that I'm not quite the cripple that she was thinking I was. I'll definitely be back!
Michael Underwood <>
Las Vegas, NV USA
Thursday, August 03, 2000 at 00:07:13 (EDT)

great site !
g.b. <>
novi, mi USA
Wednesday, August 02, 2000 at 21:27:12 (EDT)

I just got my first computer yesterday and found y'all. Cluster pains suck!!!I've been getting them for about 18 months now.I've been trying herbs to prevent their onset,with some success.St johns wort seems to help,but it makes you sun-sensitive which isn't good in the Fl. keys.My body seems to also build up a tolerance to it.And it only helps before any sign of an attack.Glad I found y'all. Keith
Keith Sullivan <>
Marathon, Fl USA
Wednesday, August 02, 2000 at 17:26:00 (EDT)

i had the gamaknife in 1991 at university of yerginia when it was the newest thing dr. stiener was my dr. and i had two non cancerpis tummors removed or radiated i guess and theyve been dormant ever since i just wanted to say i know what its like and i prey u all get well soon
Wednesday, August 02, 2000 at 03:13:05 (EDT)

i had the gamaknife in 1991 at university of yerginia when it was the newest thing dr. stiener was my dr. and i had two non cancerpis tummors removed or radiated i guess and theyve been dormant ever since i just wanted to say i know what its like and i prey u all get well soon
Wednesday, August 02, 2000 at 03:13:05 (EDT)

i had the gamaknife in 1991 at university of yerginia when it was the newest thing dr. stiener was my dr. and i had two non cancerpis tummors removed or radiated i guess and theyve been dormant ever since i just wanted to say i know what its like and i prey u all get well soon
Wednesday, August 02, 2000 at 03:13:03 (EDT)

Just found this site. I have had clusters for 20 years. First 15 years were cronic. Now they are episodic. I've been in remission for the last 18 months, but started new cycle 2 week ago. Would love to hear from other suffers.
Ron Sorensen <>
Amsterdam, NY USA
Tuesday, August 01, 2000 at 20:32:23 (EDT)

Well I am glag to see that I am not the only one living in Hell. Did not know this many people can relate with me. Unlike some of the other people I know that don't understand the pain or just think I am starving for attention. I can think of better ways of getting attention. Like cuttiing my arm off with a butter knife. But I still have a question that I have not seen on here yet.. Why?? Why does it happen? What is wrong to cause it?? There has got to be an answer.. Well if any one know feel free to contact me.. i am going to go on in pain untill.. Thanks!
Josh Hawley <>
Florence, SC USA
Tuesday, August 01, 2000 at 19:47:55 (EDT)

I was diagnosed with CH 3 years ago and had it to return for the first time since then two weeks ago. This bout has been about 50% to 70% of the intensity of the first go around (can't imagine it being any worse than my first bout-7 weeks of absolute hell). I had Imitrex left over but my physician wrote a script for 9 pills of Amerge and it's worked great. He wrote 1 refill and I tried to fill it today but the insurance company (BCBS) won't cover but the 9 in a 30 day period. The 9 lasted only 4.5 days. I have about 3 days left of the Imitrex but can't afford the $160 per 9 pills the pharmacy will charge. Has anyone had any problems with this. I can't begin to imagine going through it without the medication. Thanks to those who took the initiative to put this site together. It has given me so much more insight on this horrible thing we all live with. I feel for all of you who have lived with this so much longer then myself. God bless.
Todd Havens <>
Whitehouse, TN USA
Tuesday, August 01, 2000 at 14:12:12 (EDT)

I just found this site and since both myself and my nephew suffer from clusters I'm looking forward to finding some valueable information
Tuesday, August 01, 2000 at 12:05:00 (EDT)




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