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 July 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

Thank you for this site! What I have to say is identical to many posts I've just read -- 42 years old, had CH for 20 years, just diagnosed recently, in a cycle now, been down the narcotics road, friends/coworkers don't understand they think I have migraines... etc. etc. It's just great to know I'm not alone, and that I am not dying, as I thought years ago! I once wrote out a will during a CH!! THAT was an accomplishment! I could barely read it the next day but my family finally took me seriously.... I don't have health insurance and not much money so oxygen is not an option -- I try and find the pressure points, that works sometimes, and take a prescription does of IBU 800 that usually lets me fall asleep until the next one hits. I guess I've trained my body not to "flip out" like it used to...... but that doesn't always work. Good luck to all fellow sufferers.
Michele <>
Kents Hill, ME USA
Monday, July 31, 2000 at 14:56:48 (EDT)

Hello fellow cluster heads. nice to find a site for us at last
Iain Sutherland <>
Fraserburgh, Scotland
Monday, July 31, 2000 at 13:43:25 (EDT)

I'm a 15 year old, almost 16, and I get the worst headaches. My parents just think that I have a low threshold of pain, and that I'm just being a wimp about it. But when I get these headaches I get sick to my stomach and any movement makes me want to vomit... Can anyone tell me if these are migrains? I don't ever hear about teenagers ever getting them. Should I see a doctor about this, because my parents don't think I need to.
Christina Gosteli <>
Flanagan, IL USA
Monday, July 31, 2000 at 13:12:19 (EDT)

I've had ch for 11 years and when they first started I would throw up 20 mins before they would start, they would last 20-40 mins(of hell pain behind the right eye) 4 to 6 times a day, I went on the drug trip with the doctors and got sick of it, the best I had was deseril(is that how ya spell it?), but you can only take it 6 months at a time. It didn't stop them but it lessened how many I was getting. Now I just use codiene for major ones and I jump in bed take a few deep breaths and use imaging(just like the movie mask(with cher) but more simplified, a single shape like triangle or something and focus on it, end result=usually fall asleep and/or the pain subsides. One thing I have noticed is when the pain subsides I get a feeling of heightened alertness/awareness for the first 15-20 mins then after I feel like crap/tired and whatnot. These days I still get them 1-3 a week not as serveir as they use to(I don't throw up anymore)I still really hate the ones at night not long after you go to sleep. To tied to focus on imaging. Glad/not glad to see I am not the only one. Glad I found this site. Alchol is one of the things that sets it off for me, stopped drinking because of it, tiredness is another factor. Anyway, thats my 2 bits RR
R.Richards <>
Singleton, nsw Australia
Monday, July 31, 2000 at 08:47:34 (EDT)

I have suffered from cluster headaches for as long as I can remember. And that memory seems to get worse with every cluster. I have tried about everything out there to try to prevent, end, and treat clusters. My clusters are deffinateley solstice related. My last cluster was 2 1/2 years ago, started in November and lasted 4 months. The cluster I am in right now started around June 26, 2000, and is still going. I have tried Prednisone to break the cluster but it didn't work. I am teating each headache, 2 to 3, a day with oxygen and Imatrex. The pain is indescribable and I don't know how much longer I can take it. I am afraid to go to bed at night, and I am afraid to get up in the morning. The ones that wake me out of my sleep are some of the worst. If they can find a cure for impotence, I think they can help peple who suffer from this inhumane disease.
Jonny Cobb
Sunday, July 30, 2000 at 18:03:44 (EDT)

great to find this site i thought i was alone
bolton, lancs england
Sunday, July 30, 2000 at 15:21:21 (EDT)

CH sufferer for approx eleven yrs. Just found out doctor treats me for migraines. Clusters run in family: Father,cousin, great-uncle. Midrin works when my stomach can handle it. I have taken 80 doses in four weeks. Doesn't make them go away but it does eleviate the pain. I am going to doctor Monday to ask about other medicines I have seen on this site.
Scott Dickinson <>
Shelbyville, TN USA
Sunday, July 30, 2000 at 10:42:21 (EDT)

Ive just came out of an 18mth remission after a10 year bout of CH attacks.These latest attacks are only 2 weeks old,but they are hitting me every 2.5 hours.The docs have given me every drug that has been mentioned on these pages over this time -none have been effective and Im left with residue side effects.Lithium made me very very very short tempered verging on violent .but I,ll tell you what I,ve just discovered that helps me but I cannot explain why properly.Fill your bath with cold water and sit on the side with your feet and ankles in the water.With me the attack can stop immediatley or sometimes ease off very slowly over 10 to 15 mins which isn,t bad since they where lasting over 2 hours . try it the only side-effect is cold wet feet.Please let me know what happens,cos i,d like to know if its just me.
Paul Myers <>
Newcastle/Tyne, N/A UK
Sunday, July 30, 2000 at 09:42:25 (EDT)

Sorry. I've forgotten how to function (?) with CH. Gave an incorrect email address.
Wayne <>
Cullman, AL USA
Sunday, July 30, 2000 at 07:55:33 (EDT)

I awoke at 3:17am today (7/30/00) with a CH and have not been able to get back to sleep so I decided to check out CH on the net. Unlike many of us who suffer with this malady, the diagnosis of CH was made by the first MD I consulted about the problem. It was 1965 and I was in undergraduate school at the time. It was autumn and, as was the case for the next 20 years, my first cluster lasted for 2 1/2 to 3 months. I had 2 clusters per year, fall and spring, and even though I had an early, accurate diagnosis, at that time little was known about prophylactic treatment so I was told the DX, given a bottle of Darvon Compound-65 and pushed out the door with no explanation of the recurring nature of this disease. Despite the CH problem I managed to complete my education, including earning a Doctor of Medicine Degree in 1972. Finally in the early 1980's I found that verapamil prevented most of my CH and that breathing 100% oxygen would usually abort a headache. Between 1986 and 1990 I treated 2 other CH sufferers both of whom were treated successfully using large doses of Inderal (propranolol) 240-480 mg daily. It was one of the most satisfying things that I did in my career to be able to help prevent some of the suffering of these patients since, unlike the vast majority of physicians, I was very much aware of the devastating effect of CH on the sufferer's existence. I thought that I was finished with CH after my last cluster in the autumn of 1985, but in the past couple of weeks I have begun to have CH again, usually awakening only once during the early a.m. with the pain. I just finished a round of prednisone 60 mg/day for three days but that apparently did not abort the cluster. Since I also suffer from migraine for which I successfully use Maxalt-MLT 10mg, I have also used it when I have CH and it has worked wonderfully for me thus far. The main problems with this type of drug are the cost (about $12.00 per dose) and the fact that dosage is limited to 30mg/day. Finally, I encourage anyone who suffers with CH to try to find a caring, compassionate physician for treatment. As with other diseases such as hypertension and arthritis, no one treatment works for everyone so it is important to try the different prophylactic treamtents until you find one that works for you. This requires a physician who is willing to work with you. A note about Maxalt-MLT: it is a melt in the mouth medication with a much faster onset of action than regular tablets or capsules. That property makes it a good choice for aborting the pain of CH, IF it works for you. As a veteran sufferer of CH you all have my sympathy and my empathy. Best of look and don't give up on trying to find help. Wayne
Wayne <>
Cullman, AL USA
Sunday, July 30, 2000 at 06:55:59 (EDT)

It has been a true blessing to find this web site. Thankyou to all of you that keep it together. I am mostly amazed at the various treatment modalities utilized by different CH Sufferer's. I'm have been enlightened to see how different M.D.'s treat their patient's disorder; especially the recent entry stating the use of the "narcotic sucker"! My doc is so against the use of narcotics. I do wonder about the long term affects of the non-narcotic medications I'm on though. Already a few people from the site that I'm corresponing with. That in itself makes this whole thing a little more tolerable. I wish I didn't have them though, especially at work. Not to many people understand the unbelieveable pain you go through. Have a wonderful convention next weekend. In just finding this site I have not had time to make plans on going. Hopefully next year! I would love to meet some fellow "clusterheads". P.S. I just started "Maxalt" (10 mg. tabs) today. I have been on 1000 mg. of "Depakote" daily. Hoping and believing this combonation will give me great relief!
Dan Makad <>
Cleveland, OH USA
Sunday, July 30, 2000 at 00:39:27 (EDT)

Thank you for having this website. It good to know that I'm not alone inmy suffering
Alisha Green <>
Chester, SC USA
Saturday, July 29, 2000 at 17:11:32 (EDT)

It's worse than a slurpy headache, you know! I makes my head feel like it's frozen solid. I affectss my spellling. Anyway, the time between my headaches is spent wanting another slurpie. There is littel home for me now. bless you all. Gotta go. <>
Rockville, md USA
Saturday, July 29, 2000 at 00:49:24 (EDT)

It was great to discover this website. I have been suffering with these headaches for 20 years - no doctor OR neurologist ever diagnosed it. I've had MRI's, trigeminal nerve studies etc looking for MS or some other possible problem with no results. I've spent years living on muscle relaxants because the doctors always said the headaches were caused by muscle spasm in the back of my neck. I normally go 12 - 18 months between attacks which then last about 3 months. Then I normally get about 3 headaches a day - usually in the afternoon, evening and sometimes during the night. Occasionally I wake up with one in the AM. I already take Verapamil for a vasospastic problem with my heart, but other than muscle relaxants, no doctor has ever prescribed anything for the headaches other than the occasional pain pill - and it's hard to find a doctor that will prescribe those! I don't think they understand severe pain. I have also been through physical therapy and trigger point injections for the problem, which didn't offer much relief. It was a Physician's Asst who I saw a few weeks ago that said the headaches sound like clusters. In the past I was always told only men get them. Any woman out there can tell you that male doctors don't take us women very seriously! My 21 year old son has been getting the same type of headaches for the past week and is in intense pain. That is what started my searching for an answer. Then I found this great website and realized my (and his) headaches are classic clusters! Luckily I've been in remission for a year, but July and August are usually my bad months and I have been noticing the telltale slight "hot pains" above my right eye that usually signal that I'm coming out of remission. Maybe this time I'll be able to find a doctor that will be more helpful. In the past my best plan of self-treatment was to possibly take a knife to try to slice the nerves around my eye, side of my nose, etc. I know you've all been there! Thanks for all this great information!
Gayle <>
Sparta, WI USA
Saturday, July 29, 2000 at 00:20:14 (EDT)

Hello to all! I just found this sight today. I am 41 and have suffered from cluster headaches for over 20 years. They come every 12 to 18 months and take 2 to 5 weeks to run their course. My current episode has been two weeks so far. I most especially hate the 2:00 am ones that wake me from a sound sleep. After a week of those, the sleep deprivation gets almost as bad as the headaches themselves. I am glad to know there are others out there who understand my suffering. I also plan on asking my doctor about some of the treatments I have read about on this site. Rob
Rob Fox <>
Schenectady, NY USA
Friday, July 28, 2000 at 23:23:41 (EDT)

Great site!! Glad I found it. It's great to be with other CH's, hope I can add a little. Probably know some of ya'll from Alt.migraine.............JoJo
JoJo C., RN <>
Midland, TX USA
Friday, July 28, 2000 at 21:55:15 (EDT)

thank you for creating this web site that addresses our condition as more than an average headache
sheryl barnes <guest user>
phoenix, USA
Friday, July 28, 2000 at 16:53:52 (EDT)

Hi, I've suffered from what I thought were sinus headaches for about 5 years. My previous Dr. gave me various sinus medicines, all of which seemed to work after about 3 hours. In the meantime, the pain was unbearable. Recently, I changed jobs & have a new insurance company. I also changed Doctors. After describing my experiences, he left the room for a few minutes. When he came back, he said that he was 99% sure that I was suffering from Cluster Headaches. I had never heard of the term. When I got home, I looked it up on the Internet and discovered that for the most part, I agreed with him. I've not read any of the forum yet, but thought I'd post this message anyway. For me, I get them every night for a few weeks, then they go away for 6 - 9 months at a time. Thankfully, I only get one a day, usually shortly after sunset. Weird huh? I have, at times woken up with one, but mostly it occurs earlier in the evening. I'm glad I found this site, & look forward to reviewing it on a regular basis. Rick
Rick Weaver <>
Manhattan Beach, CA USA
Friday, July 28, 2000 at 12:55:52 (EDT)

I have been using daily methdone and have gone from 5 years of being unable to funcyion to being about 70% functional. For breakthrough I use Actiq ( it comes as a sucker and is very quick acting and powerful narcotic) Within 20 minutes I am able to fuction again
Mike lieber
Friday, July 28, 2000 at 01:59:51 (EDT)

I have after 5 years of chronic cluster headaches. I would get from 4-6 attacks each day eac attack lasted about 3 hours. I have been completly diabled. I hav had some relief from Neurontin and some relif from prednisone. However not enough to keep me functional. I was finally reffered to an Anesthesiologist specializing in pain managment and surgery for pain managment. To make along story short I started taking low doses of Methadone slowly increasing them to the level of a patient suffering from cancer. Witin 2 months I was able to work about 70% of the time and have a reasonable Family life. (I have 8 children). I would get 6-10 attacks per week but not nearly so painful. We started using Actiq suckers (A strong and quick acting narcotic) which would give 90% relief and allow me to go back to work. I know that this type of treatment is frowned upon by many. My wife is a CNA and was very concerned about the danger and sid effects of these Meds. Now after some interesting study and discussions wit my Dr. we are convinced that the side effects are far less dangerous then other Meds we used. What a blessing for me and my family. While I still am not 100%. going from completly disfunction to 70%. I can drive again and partisipate in some sports and again be a father. I am glad that ther are some Dr.s who are willing to try other methods even those frowned upon and very misundestood by many Dr.s. Don't ever give up You may just find a solution. Siceley Mike Lieber. Utah
Mike Lieber <mlieber@>
Friday, July 28, 2000 at 01:45:50 (EDT)

I have suffered Cluster Headaches for about 8 years. The las 6 have been chronic I also suffer from sever Migaine headaches
Mike Lieber <>
Bountiful, UT USA
Friday, July 28, 2000 at 01:28:58 (EDT)

I am now going through the worst episode of clusters I have ever had. The only relief is Immutrex. Any other suggestions would be helpful.
Lee shultz <>
Milton, WI USA
Thursday, July 27, 2000 at 20:45:48 (EDT)

I have suffered from C.H. for years. Steroids (prednesone) has been the only relief I have found to work (I have tried just about everything). Any new ideas? I found one article that uses clonazepam but have not tried it. Thank You
tom kelly <>
edmond, ok USA
Thursday, July 27, 2000 at 10:51:38 (EDT)

Hello my brothers and sisters. I have been a clusterhead since 1979. The beast has temporarily found me again. I truly hate it that all of you are suffering from this heartless, ruthless affliction. However, there is solace in knowing that there are other people out there who truly know what you are going through. I will pray for pain-free days for all of you.
Tom Neal <>
Hudson, OH USA
Thursday, July 27, 2000 at 10:37:26 (EDT)

Hello, It is comforting to find some understanding for this incredible pain. I've had clusters since age 17, I am now 29. It has only been in the last two years that I have found relief with the imitrex injections. Before that I just pretty much suffered in silence with doctors blaming everything from my sinuses, to stress, and even my eyesight. I currently have a Doctor who is very understanding about them and has been very helpful with treatments, although we all know that nothing will totally prevent them. I am currently in a cycle. My cycle usually lasts six weeks starting every June or July. I am hoping that I am nearing the end for now. This is a great web site, Big Thanks for starting it.
Ed Melton <>
Ozark, AR USA
Thursday, July 27, 2000 at 01:12:24 (EDT)

It Hurts is there any help out there for these Headaches? The older I get the harder it is to deal with the pain. Could it be the place where I live? I lived in Florida for 2 years and was not bothered with them. I moved back to Tn.and I started having them again.
Paul Teets <Sally Loves>
White House, Tn USA
Thursday, July 27, 2000 at 00:54:10 (EDT)

I was diagnosed with TIA and subsequent cluster headaches in late July of 1999. The doctor and I hoped that it was a one time thing. I was cautioned however, that more than likely the condition was cyclical and may return. I had a short period without problems, and like clock work around the same time last week, the headaches returned. I immediately went to Johns Hopkins' Headache Institute and started a new blockage type treatment. I am required to travel and was scheduled for a trip on Tuesday of this week. As a result, I was given a steroid injection to hopefully block or lessen the pain. Three days later, I still feel fine. The block only lasts for 10 days as I understand it. Therefore, I am again starting the numerous medications, delaying the use of Lithium. I am back on pure oxygen by face mask, Verapamil, baby aspirin, rectal Indocin and Conazepam. Hopefully, I will have a better year than the one just past. Good to know that you guys are out there to provide support and counsel. Unfortunate though, that you too suffer the paid. Love, peace and good health - headache free! Bill Madison
William F. (Bill) Madison <>
Clinton, MD USA
Wednesday, July 26, 2000 at 22:20:44 (EDT)

I'm 37 and have been experiencing cluster headaches every three years since 1990. The first time I had them I thought they were just painful tension headaches. In 1993 I discovered that they were cluster headaches and experimented with different drugs and combinations. I finally settled on prednisone and cafergot. I'm currently experiencing another round of clusters and will test the drugs to see if they hold up. If they don't I'll have to try different drugs and combinations. It's nice to have this website so that I can relate to others with the same condition.
John Bragança <>
Toronto, Ontario Canada
Wednesday, July 26, 2000 at 20:22:26 (EDT)

I had my first clusters when I was 18. I'm 75+ and had 4 last night.At least I an certain that I won't have to put up with them for another 57 years ! All the oral medications take too lng to kick in(I don,t use any prophylactic meds...side effects). Just ran into an article (Advertisment) for a device called Relaxica which promises relief in 30-60 seconds ! Have any of you had experience with it?
reuben levinton <opfel@>
delray beach, fl USA
Wednesday, July 26, 2000 at 16:27:09 (EDT)

I have suffered with Clusher Headaches for over 30 years with periods with no headaches. The last period has lasted 6 years. I am now having headaches which have not gotten to the severe stage yet. I have read that oxygen has been a relief for sufferers....I have tried that yet.
Dotty Fredrickson <>
Whitehall, MT USA
Wednesday, July 26, 2000 at 13:43:03 (EDT)

I have been fighting cluster headaches for 32 years and was very close to packing it in.I have recieved more info in the last 32 minutes than all the doctors,specialists and professors have given me in all that time. THANK YOU !! I am unable to continue now but will be in touch.
michael hogan <jdhogan@ibm,com>
sydney, n.s.w australia
Wednesday, July 26, 2000 at 10:47:30 (EDT)

I'm the clockwork-headache-type. Every second night between 1 a.m. and 3 a.m. for about 90 minutes every year from about Dic. 15 until Febr. 15. The rest of the year, nothing, thanks God
Heinz Schneider <>
Basel, BS Switzerland
Wednesday, July 26, 2000 at 06:38:26 (EDT)

I honestly thought no one knew how I was feeling. It's great to find this website!
Michael Cloud <>
Indianapolis, IN USA
Tuesday, July 25, 2000 at 23:52:01 (EDT)

Hi, my name is Peter, I am 45 years old and have been a Cluster sufferer for 5 years. Reading some of the website, you refer to me as chronic. It's a great confort to find there are other sufferers. Unfortunately, no medication seems to prevent or aid my pain. However, after reading the survey and some of the entries, I am going to discuss alternatives with my doctor. Could you please tell me if any herbal remedies have been succesfull. I wish everybody out there in "Clusterland" all the best. Peter.
Peter Worby <>
Folkestone, United Kingdom
Tuesday, July 25, 2000 at 14:27:32 (EDT)

Hello, My name is Valerie and my dear husband, Michael is the one that suffers from this Demon! He has had Chronic Cluster Headaches from the age of 27 and he is now 40. For the last month now, he has been going through a cycle of two CH a day and with the remaining shadows lurking around. Through the years, in my heart, I've felt the pain he suffers but I know from the experience of seeing his pain that I will never really know how much he suffers. Michael has been to many Doctors, Neuro's and a Headaches Specialist throughout the years. Trying many different drugs, resulting in a shoe box full of medications that just didn't work. Imitrek is the only drug right now that will work for him as long has he catches it in time. He is on medication everyday of his life, which includes dealing with all of the side effects. Michael has had a few Neuro's that have drop him completely, stating: "Sorry, I just don't know what to do for you." I'm sorry to see by this board, that he is not alone and that so many . . . also . . . suffer from this terrible Demon!
Valerie & Michael <>
Tuesday, July 25, 2000 at 14:24:50 (EDT)

Agony is quite a normal state. It's sad that there are so many others, but somehow comforting to know that I'm not alone. Thanks.
Jim G. <>
Lancaster, Pa USA
Monday, July 24, 2000 at 18:14:45 (EDT)

Great site, I'm glad I'm not the only one who suffers from this bloody terrible agony. Have been suffering from CHs for about 13 years and have been through just about every drug six doctors could perscribe, some of which worked for a while and others leaving you with a feeling of wanting to put an axe through the side of your doctors head and saying "this is what it feels like and these tabs are crap". Through moments of madness due to the amount pain I experiance, I have subjected veriuse parts of my head to all kinds of bashing, poking, squashing and freezing, including trying to suck my eye out with a sink plunger, witch didnt work thank god. One thing i did try, was to dip the side of my head in freezing cold water for a short time and then in hot water, after doing this for about ten minutes I got a very wrinkled face but the pain had subsided to a more tolerable level. Have mannaged this state now for the last four CHs, give it a go, it worked for me it might for somebody else, I just hope the affect lasts.
Paul T. <>
Southampton, Hampshire England.
Monday, July 24, 2000 at 17:51:59 (EDT)

"All alone", how do you think I feel being a female with "Cluster headache" syndrome, or whatever they want to call it today..Sorry if I may sound grumpy, but it is hard to deal wit when you are a female with a "Male oriented illness".
Jackie Keys <>
Colorado Springs, Co USA
Monday, July 24, 2000 at 00:10:11 (EDT)

Just moved to this area (Atlanta) 3 weeks ago. Need a good doctor. Have had this problem on and off for 13 years. Redfox
Sunday, July 23, 2000 at 19:50:27 (EDT)

I was so excited to find a website for cluster headaches. I have suffered for more than 15 years, and it so great to know I am not alone. Thank You. Jenette
Jenette Wilson <>
Sacramento, CA USA
Sunday, July 23, 2000 at 12:44:06 (EDT)

This site just reinforces what I've already learned about my headaches since I first began receiving them at the age of 18. I'm 55 now and currently in the middle of an episode which usually lasts about 2 months. I stumbled onto the triptan drugs about 5 years ago and now I can get some relief. Before that nothing worked and I suffered. The worst part was that those who never experienced the beast had no idea what I was going through and gave very little empathy. I can generally tolerate quite a lot of pain, but CHs puts me into the level of intolerable. I was told I would grow out of these, but that hasn't happened yet. Fortunately I had a break of about 2 years between the last episode and this one. Perhaps this will be the last...
Darrel Morisse <>
Mikado , MI USA
Sunday, July 23, 2000 at 07:46:05 (EDT)

This is a dream come true, I had no idea there might be help somewhere. I was diagnosed some years ago by a VA doctor who prescribed a drug that I found out later was pulled (a vasodilator) because it caused gangrene. I asked the pharmacist if there was anything else like it and he said no. I just resigned myself to the suffering. I have been on this sight 15 minutes and I know I am gonna keep coming back again and again. HOPE! I have been suffering very bad recently. There is a God. Look to hear from me again everybody.
Don <>
West Allis, WI USA
Sunday, July 23, 2000 at 05:08:51 (EDT)

I started with my clusters at age 24-now 55 They come to visit every 2 years and go 2-3 mo at a time the thing that bothers me the most is the fact that I get one every 2 hr and they last for 30 min ea-when I say every 2 hr I mean every 2 hr 24 hr a day.It took 4-5 years for the doctors to figure out what I had than we ran the full corse of durgs for years one time it was so bad my wife put me in the car and took me to the hospital by the time I got there the headache was gone we don"t do that any more--sancert is the only thing thak seems to work for me.Thanks to everyone for being there for those of us that share the devil
Alan H Hamilton <dancer01699>
NewPaltz, NY USA
Saturday, July 22, 2000 at 21:09:30 (EDT)

hi my name is kelly and i have had cluster headaches since the age of about 10 years od and they have had a hard time getting the right medicine and any advice yo can give me would be a great helpthank you
kelly <kelly55106@webtv>
st paul , mn USA
Saturday, July 22, 2000 at 14:25:24 (EDT)

Hi. I'm 35, and started having these wonderful headaches about 2 weeks after I went through Brain Surgery for an Acoustic Neuroma. I thought the trial was going through brain surgery, when in fact, it is suffering with these headaches. They have been happening for 7 months now. I started out with about 3 a day. Now I am down to a few times a week, with lovely residual headaches before and after. I often feel, after a headache, that someone has kicked me in the back of the head. My sypmtoms are a stabbing pain in my left temple (but sometimes can be right temple), the nose running. Pain in the jaw area. The pain in the temple sometimes wraps to the top of my head. I have severe pounding pain in the back of my neck. I use ice packs and heat packs to try to relieve the pain. I also use oxygen, which at least lessons the severity of the pain. I try very hard to relax, but as you know, that is next to impossible. I am suffering from neck pain, and shoulder spasms also. I have been out of work since November due to all of this. I tried Imitrex and Verapimil, to no avail. Dr now has me on Neurontin, which seems to be spacing them out. I use Esteric Plus when I feel the headaches coming on. That takes about 15 to 20 minutes to really start working. My headaches last at least an hour, and usually at the end, I am quite drained, and my mind is foggy. I have trouble with clarity even the following day. This is a nightmare. So glad I found this site. I'm hoping for suggestions on how to deal with this excruciating pain. I hope to return to work soon, but wonder how I will ever manage these things at work. They are incapacitating, and the worst pain I ever have experienced. Has anyone gotten these Post surgery? I've read some entry's stating the episodes last 3 or 4 months. I'm now 7 months strong here! Please write me back with suggestions, and also, just for support. The strain on myself and my family is tremendous. I'm at a loss for words....but I want my life back. PS If you care to read my story, please visit my webpage at
Cindy <>
Saturday, July 22, 2000 at 00:19:50 (EDT)

Hi. I'm 35, and started having these wonderful headaches about 2 weeks after I went through Brain Surgery for an Acoustic Neuroma. I thought the trial was going through brain surgery, when in fact, it is suffering with these headaches. They have been happening for 7 months now. I started out with about 3 a day. Now I am down to a few times a week, with lovely residual headaches before and after. I often feel, after a headache, that someone has kicked me in the back of the head. My sypmtoms are a stabbing pain in my left temple (but sometimes can be right temple), the nose running. Pain in the jaw area. The pain in the temple sometimes wraps to the top of my head. I have severe pounding pain in the back of my neck. I use ice packs and heat packs to try to relieve the pain. I also use oxygen, which at least lessons the severity of the pain. I try very hard to relax, but as you know, that is next to impossible. I am suffering from neck pain, and shoulder spasms also. I have been out of work since November due to all of this. I tried Imitrex and Verapimil, to no avail. Dr now has me on Neurontin, which seems to be spacing them out. I use Esteric Plus when I feel the headaches coming on. That takes about 15 to 20 minutes to really start working. My headaches last at least an hour, and usually at the end, I am quite drained, and my mind is foggy. I have trouble with clarity even the following day. This is a nightmare. So glad I found this site. I'm hoping for suggestions on how to deal with this excruciating pain. I hope to return to work soon, but wonder how I will ever manage these things at work. They are incapacitating, and the worst pain I ever have experienced. Has anyone gotten these Post surgery? I've read some entry's stating the episodes last 3 or 4 months. I'm now 7 months strong here! Please write me back with suggestions, and also, just for support. The strain on myself and my family is tremendous. I'm at a loss for words....but I want my life back. PS If you care to read my story, please visit my webpage at
Cindy <>
Saturday, July 22, 2000 at 00:18:54 (EDT)

Hi there. Hope this isnt too long! im an episodic clusterhead- every 12-18months, for 3 months, 4-6 per day. I discovered this site a while ago and was so relieved to find there were other CH sufferers out there. I was in 'remission' at the time i discovered it, but kept it in the back of my mind for future use, and used it to research some treatment possibilities. I have not met anyone at all that suffers CHs, and being in NZ, I dont think there would be many given this is supposed to be rare. I got my first CH in 1992, and they were diagnosed (finally! and after much distress, despair and pain) in late 1997. I feel like personally abusing the doctors I consulted that seemed to be ignorant of their existence. I was at university when they started, and somehow managed to complete my degree with excellent grades, and enter the workforce. Of course I think I have sacrificed alot of other parts of my life in order to try to cope with CH and still succeed in study. Since graduation, and starting work in 1996, I have worked through the cluster periods, as knowing they last 3 months on average, I was petrified of losing my job if I dared to take time off. This has added in a big way to the stress of an already stressful job! I am not working currently, and have had another bout start 2wks ago, and feel that Im not willing to even try to work if I cannot find an effective treatment. Im about to try imigran inj (=imitrex), and possibly O2 this time round, but my GP doesnt seem to think Ill be allowed to have O2 at home (defeats the purpose if you ask me). Its a relief to know that others can identify with the nature of the pain, as from the reactions I get from non-clusterheads, they have absolutely NO IDEA, which can be hugely frustrating. I look forward to being able to use this site as a much appreciated resource Yantha NZ
Yantha <>
Friday, July 21, 2000 at 08:00:00 (EDT)

I've had clusters for about the last 20 years. I seem to be one of the lucky ones as mine come only every 3 - 4 years and only last for about 2 months. I'm presently going through a patch of them and feeling very sorry for myself, so it's great to find a web-site like this.
Ken Schmidt <>
Johannesburg, South Africa
Friday, July 21, 2000 at 07:56:37 (EDT)

Homeopathy … It's natural, it's safe, it's cheap, and (with a good MD Homeopathy specialist) it works - at least for me. I was a chronic CH sufferer for about 10 years, having several hour episodes nearly every day, day in and day out, month in and month out, year after year. My neurologist prescribed nearly every drug known for clusters and nothing would prevent them, and only one thing would assist in aborting them (Cafergot). I had the standard brain scans and blood tests that many CH sufferers have gone through and I even traveled a great distance to visit a well-known Head Pain Institute and just got more of the same … more drugs, and without any new results. Prior to "stumbling upon" a good Homeopathy specialist my next course of action would probably have been acupuncture, then (as necessary) possibly followed by surgery. As all CH sufferers know, the quality of life during a CH episode is somewhere below the bottom of any scale used for measurement, and the chronic sufferer is merely an episodic sufferer with one long episode that never ends. None of this is new to CH sufferers, as we have all been guinea pigs for neurologists, trying this drug and that drug, not really knowing which, if any will really do any good. (For the sake of those neurologists reading this, I'm not putting down the profession, merely the lack of knowledge and understanding of the Cluster Headache and the treatment thereof.) After visiting the Homeopathy specialist my CH's were gone in about 7 weeks, for the first time in many years. Being the skeptical person CH's tend to make us, I wouldn't let myself completely believe that the $6 homeopathic remedy was the cause. After 9 months the CH's returned and I took the remedy again and it only took about 4 weeks for them to leave this time. They have now been gone again for 7-8 months. It has been pure heaven to have a life back again. I posted a message similar to this about a month ago but was a bit disappointed in the response. (Five or six people did contact me for my doctor's name in Wisconsin, and it sounds as if she will be getting calls from Florida, Mexico, N. Dakota and Canada.) I sit here and read the messages from people taking unaffordably expensive drug after drug, most of the time without satisfactory results, and many times with very serious side affects. Many people have tried acupuncture (with mixed results) and some have even tried surgery. The common things among all CH sufferers are serious pain, life disruption, and not knowing where to turn next. Unless for some unexplainable reason you enjoy the pain, expense, life disruption, drug side affects and lost sleep, consider Homeopathy. It's natural, safe, cheap, and it works - at least for me. What can you lose, except possibly the CH's? Homeopathy is not witchcraft or something; it's real medical treatment. If you are unfamiliar with it, buy a cheap paperback book on the subject. If you become interested but can not find a Homeopathy specialist that you have confidence in, contact me and I will give you the name of the one in Wisconsin. She's great, and her remedy worked. (By the way - Homeopathy remedies for CH's are tailored to each individual from the information obtained during a very lengthy medical interview, rather than the random guesswork we are accustomed to receiving from out neurologists.) I certainly hope Homeopathy works for some of you (and me too if they return again). I would sure like to read some success stories in a few weeks.
D. Olson <>
Friday, July 21, 2000 at 00:05:05 (EDT)

Thanks to websites like yours I have finally figured out that this "problem with headaches" I have every one or two years are clusters. I have been hospitalized on numerous occasions over the years for this, and the doctors have always told me its "migraine" - yet none of the migraine medications work for me - except DHE (sometimes). No one has mentioned cluster. I guess I'm the wrong gender. I now know the right symptoms to mention (I never thought of my drippy eye and slightly stuffy nose as related to this!) I am a web developer - and this is a fantastic site!! Thanks for everything.
Karen K <>
East Setauket, NY USA
Thursday, July 20, 2000 at 22:07:28 (EDT)

What a super and resourceful site!! Cant tell you how glad i am to have found it! I have suffered with CH's for 9 yrs. now and like everyone else, im sure, thought i was going completely out of my mind!! Can't imagine what my wife was thinking! I was one of the fortunate ones who found a great neurologist and was diagnosed almost immediately! It was wonderful to find out what they called this condition but finding other people to relate to it was nearly impossible! My wife, who is wonderful - god do i love her - tries to understand and be there for me in any way she can - but how can you describe a pain that is incomparable to anything you have ever experienced!! It's nice to know that there are other people out there who have experienced this and truly understand!! What a comfort! Anyway gang - even after this cycle ends, i will still check in and see how everyone is doing and try to help with suggestions of treatment that have seemed to work for me!! Until then - be well and God Bless each and every one of you and the people who love you!!
Kyle L. Blankenbiller <>
Reading, Pa USA
Thursday, July 20, 2000 at 10:33:28 (EDT)

Hello! I'm a Pole so forgive me my english. I'm 27 and I suffer fo cluster headaches fo years. In the beginning doctor didnt know what is it. Then when we tod them what it (we found it in a medical book - "we" means me and my mother)is, they didint know how o help me and they dont know till now. I'm very happy that I found that side, maybe I will learn something new what can help me.
Kuba Wilamowski <>
Warszawa, Poland
Thursday, July 20, 2000 at 06:05:20 (EDT)

I have been suffering since I was 18 years old. I am now 45. I have been on Vrapamil ( to no avail ). I am going through a session now, I am probably half way through ( I hope). I was taking Fiorinal with codine, it stopped working. I am now on Vicadin. There has to be something that can be done for us poor people who suffer with this monster of an illness.
Richard Trapp <>
Levittown, PA USA
Wednesday, July 19, 2000 at 23:33:35 (EDT)

This site is new to me. As many it is nice to know that others suffer from CH and that I alone am not the only one hurting. I have had clusters for about 3 years now I'm 40 years old. I'm in a bout now 1 every other day, for 2-3 months now. They seem to be getting worse and more frequent. they ussually last 2,3,or 4 months at a time fall and spring. So glad I have found this site again thanks
Matt G. <>
portland, or USA
Wednesday, July 19, 2000 at 23:14:21 (EDT)

It has been a few years since I've visited this site ... also was a few years since my last dance. the beast is back, 3 months now 2-3x per day. At the onset I was in denial, refusing to beleive they were back and did not go directly to meds. Big mistake ... allowed the beast to settle in and stay awhile. This site has come a long way, you all are providing a great service by sharing fears, treatments and maybe most importantly, independent confirmation to our families, freinds and employers that what we experiance is not your garden variety headache.
Steve V.R <>
Pella, IA USA
Wednesday, July 19, 2000 at 21:03:40 (EDT)

I am a 48-year-old female, and I was awaken from a sound sleep three years ago with the most excruciating, sudden pain I had ever experienced. My husband rushed me to the emergency room, certain I was having an aneurism or something even worse. After hours of treatment in the ER (including spinal tap, CAT scan and MRI), it was concluded that I'd had a migraine. I'd never had headaches of any kind prior to that, but they kept coming, several times a day, for a couple of months during that first cycle. After visiting many doctors and neurologists and doing some research on my own, I was diagnosed with cluster headaches. I am now in a cluster cycle that has lasted since New Year's day--over seven months--and I generally have several of these monsters a day. It isn't unusual for me to go the ER because the pain is so extreme I can no longer tolerate it. Suicide has entered my thoughts many times, and the only reason I haven't resorted to that is because of my three children and wonderful husband. I had my first two children by natural childbirth (29 hours of hard labor with the first one), and I can assure you that labor pains seem like a minor thing when compared to the pain of a cluster headache. There's no way to describe this incredible, disabling pain. It is so severe that I cannot sit or lie down and cannot be still. All I can do is hold my head and pace, hit the other side of my head with a hard object as hard as I can to try to detract from the headache pain, cry and scream. When I become too tired to pace any longer, I can sometimes sit on the side of the bed and rock. When I'm in the middle of one of these monsters, I cannot communicate with anyone. I can't talk and can't concentrate on anything but the pain. (It's much like being in childbirth labor in that respect.) I can't even use to the telephone to call my employer and tell him why I'm not in the office. (He's learned to figure it out -- if I'm not there and haven't called, I'm having a headache.) Without the proper medication, or sometimes even with all the medication I can muster up, they last anywhere from an hour to three hours. That may not seem like a long time, but with the intensity of the pain, it is an eternity. I'm beginning to think my headaches have gone from episodic (I used to get them for a period of several weeks twice a year) to chronic, because I haven't had any relief in so long. My insurance company only provides about half of the amount of the Stadol I need (the only medication I've found that somewhat relieves the pain. They tell me that's all I need. It's very expensive (about $100 a bottle, which is enough for 7 or 8 headaches), and my out-of-pocket cost to supply the remainder when I'm in the hardest part of the cycle is about $2,000 a month. (They originally allowed less than half of what they're allowing me now, and after a long appeal process, they relented and inceased my permitted amount.) You may be thinking I have an HMO, but it's a very costly PPO. Needless to say, I can't always afford all the medication I need, so many times I'm incapacitated for days on end trying to deal with these things. Fortunately, my boss has been very understanding, but I'm wondering how long he can continue to be so. I have four and a half weeks of vacation and personal time every year, and I used all of that for this year long ago. My husband is a school teacher, so my salary provides the largest portion of our income. It is a very scary thing to think what that might mean if I don't get some relief from these things soon. Thanks for listening. I'm so glad to have found this site.
Linda Smith <>
Lake Mary, FL USA
Wednesday, July 19, 2000 at 18:55:25 (EDT)

18 when it started 42 now, I resent the fact that it took the doctors 7 years to tell me that I was not dying, I have never found anything to take the pain away, I can only say that time has taught me how to deal with CH better.
Gary <>
Hemel Hempstead, Herts UK
Wednesday, July 19, 2000 at 16:41:17 (EDT)

I am a 40 year old white male who has been a sufferer of CH for 15 years now. I just started a set last week after two years of remission. I have tried quite a few drugs (even resorted to Demerol, which at least provides a decent knock-out punch), and have just been put on Imitrex inhaler, Oxygen and Prednisone. Prednisone has helped quite a few bouts before, but the last episode two years ago it did nothing. I find it difficult to read the information here on this website without crying. I am not even sure if my wife of 11 yrs really understands the pain levels involved, even though she has seen me wadded up in a ball sobbing and screaming more than enough. My 6 yr old son so far has been great, and offers total love and consolation. When my new Dr. asked if I had ever been suicidal, she freaked when I told her"of course!"...she scribbled something in my file, and moved on. As I grow older, I have developed a relationship with the pain in a way. I am intelligent enough to know it is not going to kill me. Thoughts of suicide, though commonplace ren't ever really contemplated, just interjected momentarily as an option in the stream of jumbled shit that flies around my head during an attack. I know they will end eventually. I pray they don't affect my work performance or attendance at my new job. Knowing others are out there going through this helps. Strange as that REALLY sounds...KNOWING others are suffering similarly shouldn't make me feel BETTER!!! but knowing I am not alone offers a place to go...and hope for continued exposure of this malady to the unknowing public(and ignorant medical and insurance INDUSTRIES) means that perhaps some day it will be somehow cured. Perhaps the recent completion of the DNA genome mapping will help research(if they ever bother to look into it) I am really rambling now...but I do feel better.. Dan Byers
Dan Byers <>
Shaker Heights, OH USA
Wednesday, July 19, 2000 at 16:34:13 (EDT)

Hi, Iam a 30 year old male who started having clusters at age 22 but was not diagnosed until 1998. Before then i went to numerous doctors and nueroligists but no one seemed to understand. One doctor said "people jst have headaches sometimes" I'd like to pound on his head with a hammer for about an hour 3 to 4 times a day, every day for a week or two until he decides to g get some education about clusters! After i was finally properly diagnosed in 98 i was started on the prednizone treatment which stoped the cluster by the trid week of taking them. I went for two years without anymore clusters. June 6,2000 they came back wthout warning at a rate of 4 to 5 a day. worse than ever before with a stabbing pain in my ear, right nasal passage would completely close within 5 min. ,toothache like pain in my entire right jaw,cheekbone pain. I got about 14 hours of sleep the first two weeks. I finally got in to see my neuroligist and got the prednizone again. it helped the frequency but not the severity,and didnt stop the cluster this time. I am curently scheduled to go back to the dr. next week. there are a few things that i have found that help me to bear the pain sometimes that some people might want to try. i get an icepack and a heatingpad an alternate hot cold hot cold about 1 time per minute on the pain area. It also helps sometimes to go for a jog at the onset of pain. I can use a Q tip to massage the ear canal on the side of the affliction, just dont try to go to deep in the ear! Massaging my back teeth and gums with a rotating electric toothbrush gives some releif. these are some of the things i found that gave me a lttle relief for the time i went without a proper diagnosis and they still help me get by until this cluster is crushed. I had just finished a 1 mile jog in which the ch went away before i finished when i camein and found this site. I have never known anyone personaly who has had this afliction, and i hate to here somany people know the worlds worst pain but it is comforting to know that there are people who really do undestand what a hell this is to live with. At leaste now i know that not everyone thinks i am crazy or weak because my head hurts so bad! Good luck to all suffers of CH i wish you all many painless days and nights! Bless you all
Ronald Dean <>
versailles, ky USA
Wednesday, July 19, 2000 at 16:09:44 (EDT)

I've had headaches for 9 years now. They started when I was twelve. I don't know if it is CH or not. All the neuros seem to think that if it isn't, CH is the closest thing to it! Haven't had much luck on the old relief front. Tried every drug under the sun! Now taking cannabis which at least lets me get a half decent sleep! Have had to give up uni twice already and amn't working at the moment but hope that in time I'll be able to. Its nice to know that there are others out there with the same problems. Good luck all!
Annette <>
Dundee, Scotland
Wednesday, July 19, 2000 at 14:19:21 (EDT)

This site has had an effect on my life that i would never have expected. I was so happy to come across it 18 months ago that i physically broke down in tears. Nobody who hasn't suffered with the attacks will never understand the pain and suffering we go through. I am just coming out of my cluster and it is 18 months since i last had attacks. What a difference 18 mths. can make to a website - well done and keep up the good work. I now feel good in myself because i can print and pass on your information to someone else who is not on the web, to help their family realise the severity of the pain. Thanx for being there.
Paul Sunderland <>
Keighley, England, UK
Wednesday, July 19, 2000 at 09:00:33 (EDT)

Thank God I found you guys! I have never felt so alone & scared. I just started a cycle-afraid to sleep-like Freddie Kruger's waiting. My blood pressure went so high 2 years ago with a cluster that I blew an aneurysm.Now I can talk to someone who knows how it feels-maybe I'm not really crazy!
Susan McMaster <CreoleSuzanne@aol,com>
Benton, Ar USA
Wednesday, July 19, 2000 at 02:21:32 (EDT)

Just wanted to say HI , Im a 37 year old male that was diagnosed with cluster headaches 5 years ago,I have been headache free for all that time,then my worst nightmare happened,we went on vacation to ocean city M.D. with my family & yes you guessed it they started.Its nice to see that Im not alone.My wife has seen what I go through but Im not sure she understands the amount of PAIN Im really in.Thanks for being here!
Bob Gill
Glen Rock, pa USA
Tuesday, July 18, 2000 at 12:21:23 (EDT)

I am a 35 year old female who has been suffering from chronic migraines for about 6 months. I have been on numerous medications for them, including but not limited too propanolol, veripamil, midrin, numerous narcotics, imitrex. I have been having alot of blood pressure problems since this started, ranging from 180/100 to 138/118. I have headaches almost daily, most of the time very severe. At this time I am taking fiorcet to relief the pain, and it doesnt always work. I have had cat scans, mri's, more test then I can mention, trying to determine the reason for these headaches. I see both a family physican and a neurolist for the pain. Can anyone suggest things to me that will help relieve the pain, or anything I should tell my doctors to look for that they may be missing. Feel free to email me at I would apprecaite any help.. Thanks Lisa
Lisa <>
Independence, Wv USA
Tuesday, July 18, 2000 at 12:16:34 (EDT)

Am 55 years old. Was diagnosised in 1972. Enjoyed 4 years of headache remission prior to July of 2000. I use O2 and Imatrex, but frequency and sevarity are such, at this time, that the clusters are only marginally controlable.
Robert S. Long <>
Mill Spring, NC USA
Tuesday, July 18, 2000 at 03:21:45 (EDT)

As I see everybodys comments and pleas for help about Head Cluster Headaches. I notice I'm not along in my pain. It's very painful!!!!!! I would like to say to each and everyone of you "God Bless You ! I had HCH since I was 12yrs old they often come at nite for weeks and go away for years. I've been seen by many doctors and also military doctors and been give many types of drugs that did not help. It's been 7yrs since my last HCH. I'm now 37yrs old, and now there starting to come back. Please Help !!! someone
Rodney <>
Dallas, TX USA
Monday, July 17, 2000 at 23:25:34 (EDT)

I have been suffering with cluster headaches for about six years now and until recently they have been tolerable.This last set has come on stronger than ever.I can see why its known as the suicide headache! Please if anyone knows any relief from this let me know. thanks
Monday, July 17, 2000 at 20:40:49 (EDT)

My son, 31 years old, was just diagnosed with CH. Onset, six days ago. He is in such agony. Thank you so much for this web site. I now feel so much more educated to this bewidering "illness".
Mary <>
Rockport, TX. USA
Monday, July 17, 2000 at 19:53:57 (EDT)

I just found this site,and im glad i did ! I am 32 and have had CH since my 22nd birthday.They come in the fall and spring and last 3-6 weeks and go into 2 year remissions.My last torture test was last year, but guess who thought it would be a good idea to have summer camp IN MY HEAD ! This last week has been the worst in 10 years and nothing is working{imitrex injections}My main concearn is that since they have been back i have had very profound hearing loss, i work heavy construction so my hearing is bad any way but the ch and the loss at the same time makes me a little nervous please if anyone has any similar problems let me know ,thanks and hang in there!!!!!!!!!!
mike k <>
cleveland, oh USA
Sunday, July 16, 2000 at 15:54:20 (EDT)

my first cluster started in aug 1977 cronic until 1983 face was deadened surgicaly without helping. three month episods almost every year untill 1997. none sense. Tried Prednazone which helped but may have caused my aorta to calsify requiring Heart valve replacement. I fell that my teath may have been a triger.
Robert j westcott <>
Bakersfield, Ca USA
Sunday, July 16, 2000 at 00:30:30 (EDT)

Here is a simple tip to make your Imitrex go a little bit further. If you use the auto-injector request that your doctor write your prescription for the 5ml single use vials. You have to use an insulin needle to administer the dose so they're not very popular, thus not many people know about them. The advantage is this, the recommended dose is 5ml and the vial contains 7 ml. I have found that if I get the shot early enough, as little as 2.5ml will work. That's almost 3 for the price of one. So, if you don't mind sticking yourself with a needle you can save a few bucks. Good luck and God bless you all.
Saturday, July 15, 2000 at 20:26:35 (EDT)

I'm so glad to have found this site and I'm looking forward to getting to know others who suffer with this excruciating pain. Only another sufferer truly knows the intensity of the pain. I liken it to an icepick stabbing in my brain. My pain site is different from most--it's at the top, left side of my head.
Jo <>
Saturday, July 15, 2000 at 12:18:53 (EDT)

Thank you for this site. A friend recently suggested that he goes out and has a bite to eat when he has a headache and that I should do the same. I wanted to kill him. At least I know, from this site, that there is someone out there who understands.
Friday, July 14, 2000 at 21:41:11 (EDT)

I can't believe I finally found a place where there are people who go through the same thing I do. Sometimes I feel like no one understands the pain and suffering these headaches cause.Every time I go through a bout of headaches it totally disrupts my life and my family. Thanks for a great website.
Robert Sangster <>
Port Neches, TX USA
Friday, July 14, 2000 at 21:27:44 (EDT)

I thought I would kill myself until I found imitrex injections. Stadol sucks! Thank god I found this site!ice cold showers are ok, punching yourself in the head really hard helps a little too. How is it when you get one driving WOW!!
brian botts <>
la costa, ca USA
Friday, July 14, 2000 at 12:06:43 (EDT)

I have not yet been diagnosed with cluster headaches. I have had constant headaches for 11 years now 3-5 times a week. They usually start in the afternoon and last until I wake up. For the past year about every 2 months I have had the most agonzing pain in my right eye and I feel like ending my life the pain is so bad. I would have no idea what it's like not to have headaches. Is there any hope to be normal?
Patti <>
cleveland, OH USA
Friday, July 14, 2000 at 11:11:35 (EDT)

Hi - I've suffered intermittent cluster headaches for about 21 years. I really like this site, I'm looking forward to getting information. Thanks for this site!
Mike Costello <>
Tustin, CA USA
Thursday, July 13, 2000 at 18:36:24 (EDT)

I have had cluster headaches (chronic type) for 20 years. It is great to know that there is a web site for us. I'm sure there is a lot of info out there. I will be browsing the site for awhile. thanks for being there.
Nannette <>
San Diego, CA USA
Thursday, July 13, 2000 at 18:08:03 (EDT)

I am an almost 40 yr old female who has occasional bouts with cluster headaches, although not nearly as bad as some, they are bad enough. I am looking forward to checking out the rest of the site.
Elsie Oriel <>
Fort Ann, NY USA
Thursday, July 13, 2000 at 11:13:36 (EDT)

I had my first CH when I was 25, Had 1-3 headaches every day for about 1 year then I went into remission for 12 years now they have been back for just about 1 year now, they have been very bad the last 2 months I spent my 39th birthday in the ER, although it was my first trip ever to the Er for CH I guess I should be lucky after reading some of the other stories. I just started on Predisone @ days ago and have not had a headache since so I'm hoping this work even if it's only for awhile. I haven't been able to sleep for 3 days now so I'm hoping tonight will be the night to sleep. Glad to have found a site like this. Wish you our well in the fight of this terrible thing we call CH.
Joyce Rivard <>
Oakdale, MN USA
Thursday, July 13, 2000 at 01:33:29 (EDT)

I had suffered severe CH for more than twenty years but have had no episodes for the past eight years now. I quit drinking, smoking and my high pressure job. I have taken medications and treatments too numerous to detail and don't really know what ultimately caused my relief. I hope it is permanent but I will always dread the possibility of future episodes. I empathize with anyone who suffers from this awful illness and just wanted to check in and say--I'm out here praying that each of you will find relief from the pain and release from the grips of CH. I only wish that this resource was available when I was having my problems.
Jon Elder <>
Monterey Park, CA USA
Wednesday, July 12, 2000 at 22:44:16 (EDT)

Computers and Email are new to me . Cluster headaches aren't . Thanks for being here .
Wednesday, July 12, 2000 at 18:12:54 (EDT)

This is a great site with wonderful information. I look forward to visiting it often.
Hixson, TN USA
Wednesday, July 12, 2000 at 17:15:02 (EDT)

Hello Its Dean again, I'd just like to pass on some good fortune I've found. I went from 3 to 4 headaches a day, 4 to 5 days a week a total of 15 to 20 headaches a week down to 2 maybe 3 a week. I've been taking predinesone and obviously have had a lot of luck controlling the amount of headaches per day but as some of you know predinesone can make you feel like your out of tune with your surroundings. The good fortune I'd like to pass on is a new med I've been taking it's called NORVASC this is a calcium channel blocker with little to no side effects and is doing a kick a$$ job for me. Talk to ya soon, Dean
Dean <>
Torrance, CA USA
Wednesday, July 12, 2000 at 15:39:12 (EDT)

hi. i've pulled myself together to at least be able to sit at the computer. i got my first cluster headache on July 4th. i am 36 yrs old-the mom of 3 and right now living on drugs that make me feel i am in another world. my first episode was very scarey. my husband thought i was dying. i blacked out for hours and don't remember most of my time in the hospital. they ran tests and told me it was nothing life threatening and sent me home. i am on beta blockers. the pain has subsided to a continuous ache now. i am constantly dizzy and weak. i can not live like this. if anyone would like to e-mail me, i would like someone to type with. i couldn't figure out how to use the chat room. thank you.
colleen <>
adk mtns, NY USA
Tuesday, July 11, 2000 at 16:02:52 (EDT)

I got my first attack in Oct. 1984 when I was 47. Here we are in 2000, and I just took my second shot of Imitrex today, which means I'll probably wake up around 2 or 3 in the morning to take another. What I've found in battling the demon all these years is that how few doctors have researched CH. It's amazing some of the treatments that were tried on me before a pharmacist told me about Imitrex. He was the same pharmacist that was selling me oxygen by the bottle. For me, the injections are most effective. I have had some success with the nasal application, but not always.
Dik Lang <>
Manhattan Beach , CA USA
Tuesday, July 11, 2000 at 02:57:21 (EDT)

Hi, my husband is a suffer and it is getting worse. Today is the first time I have logged on and felt that I understand his pain. thank you. We are going to try the water thing today! Wish us (him) luck! Is there and end in sight?? It has been 3 years with no remission and they're only getting worse! Thank god for Imitrex!
Jane <>
Monday, July 10, 2000 at 21:19:18 (EDT)

I have been plaqued this problem for 13 years. I recently moved to Atlanta from Pittsburgh. I am looking for a doctor who specializes in this field. Please help if you can. Thanks, Leon
Monday, July 10, 2000 at 11:26:38 (EDT)

I was so glad to find this sight, to read other stories of people with CH, or as I refer to them, suicide headaches. I have been suffering with these demons since I was sixteen. At first they came about every six months and lasted for a month at a time, then they decreased to about once a year, still lasting for a month at a time, now I am 34 and it is about once every year and a half. However, they have become more and more severe. I've tried meds years ago and nothing worked, so my doctor resorted to pain killers like perkiset, codeine but they made me a walking zombie. And as a single parent of two I could not be in that condition, they didn't really work anyway, they may have eased the pain a bit but never took them away. I am currently in the middle of a cycle, and they have become so unbearable. MY friend had to rush me to the ER two nights ago, where it took four doses of morphine thru an IV to subside the pain. I could probably make it thru the bouts every night if I wasn't so completely exhausted after wards. What scares me is they have changed there pattern. I would get one a night at the same time for a month, but now it's every time I fall asleep I am wakened about a half hour later with such unbearable pain. Last night I had four, the night before three. I am afraid to sleep, yet am so tired. I have to work but I just don't know how I am going to be able to with this bout. I can't drive cause the constant pain behind my left eye is so bad I can't see straight. I don't know if I can make it thru them this time, if anyone out there has any words of relief please help! I will try anything. Please! Trying to survive, Donna.
Donna <>
Bloomsburg, PA USA
Sunday, July 09, 2000 at 11:30:03 (EDT)

i wish there was no-one else out there with this problem, and pray for a solution daily, Thanks
Pete R. <>
Newport Bch., Ca. USA
Sunday, July 09, 2000 at 02:51:00 (EDT)

I am delighted to find a website dedicated to CH--I am here searching for better treatment for a CH sufferer who came to sick call here at our clinic on Johnston Atoll in the middle of the Pacific Ocean. I will also flag your site and send him here for support and encouragement. Keept it up!
Kelvin DeGinder, MD <Kelvin.DeGinder@bos,johnston,af,mil>
Johnston Atoll, USA
Saturday, July 08, 2000 at 17:20:10 (EDT)

Hello again people - This site is incredible on how we can all relate. I have some information that may help somebody. I began a new cycle of ch's 3 weeks ago now and unfortunately we have moved since my last cycle and I have found a new neurologist. He is god. He said I was his worst case ever. He has tried so much to help me, but wasnt sure on where to go. He contacted the National Headache Foundation in Chicago and I must tell you they know what they are doing. A combination of 320mg verapimal, 80mg prednisone and imitrex when necessary. The prednisone is nothing new to me, but verapimal and imitrex have been lifesavers. The verapimal has blocked the bad ones, because I know Im still in a cycle(you know the feeling)but things are going well. I havent had a bad one since 2 days after starting verapimal, and only one poke in the arm this week. How many doctors out there will admit when they are dumbfounded and seek help from an outside resource. I would like to pass on some names and numbers: National Headache Foundation Chicago, Il (773)388-6399 or 1-888-643-5552 National Org for Rare Disorders (NORD) (203)746-6518 I hope this will be of help to someone because getting recognition and treatment for this disorder is almost as hard as the pain is to bear(not quite). People just dont understand how we can have our worlds turned upside down from just a "headache" Keep a chin up people and know you are not alone. Request media exposure from the links at this site please.
mike <>
otsego, mi USA
Thursday, July 06, 2000 at 23:35:15 (EDT)

Hi, so happy to come across this web site, I've had clusters for 4 years now and I've tried most things, but imigran subject seems to be the only thing that works. I'd almost forgotten about my headaches as I havent had any since january and BANG first one this morning. I feel so helpless and depressed I have a very important exam in 2 weeks and am worried that these damn clusters are going to ruin them for me. Went to the Doctors today and persuaded him to prescribe Oxygen, dont quite know what to do with it but I'll try anything. Cheers So glad to find this site
Simon Amphlett <>
Cardiff, Wales U.K.
Thursday, July 06, 2000 at 19:14:16 (EDT)

I have been experiencing this affliction for about 5-6 years now. I thought my teeth were rotting from the top because the pain was so bad in my face. That is where I hurt the most around my eyes and cheeck. When I was first diagnosed I thought the neurologist was full of it, I thought yeh right a seasonal headache. I get one attack every night (every frickin night). While reading the submitted stories I couldn’t help but drop a few tears knowing how hard it is for me to go through one bought a day but to hear some people have 4-5 a day,,,,WOW hurts to think about it. I started using ercaf and that worked pretty well if I could catch it when it very first started. I moved to a different state and the drug is no longer mad so I was put on wigran, which does not help. I was given some sample Zomig and they seem to work well,,,if I catch it right away. My insurance doesn’t cover that drug though so I am taking prednizone and veraprimill which makes me sick to my stomach and never really gets rid of the pain just makes it bearable. I’m sorry to hear so many people suffer from this, when it gets bad all I can do is lay down in the dark, curl up in a ball and cry until I fall to sleep or the pain goes away. By the time the pain goes away though I’m so tired I can’t function anyway. I’m anxious to check out the sight and hopefully find some helpful information.
Mike Llewellyn <>
litchfield park, AZ USA
Thursday, July 06, 2000 at 18:20:09 (EDT)

Hi everyone :-> I love this site, it's informative, intimate and inspired. I think my CH started when I was in senior High. I'm not sure because I suffered from severe tension headaches before and only slowly beagn to see a different pattern. I had to diagnose myself but the only thing I found any reference to was regular migraines. I got some help, a physical therapist helped me get rid of most of the tension HA, which only made the other more obvious. Got Imitrex which worked okay for a while. Continued searching for answers, found out about Horton's HA, more pieces of the puzzle fitted. Went back to the doctors. A more recently educated one gave me Inderal, a beta blocker I take daily and which changed my life. Hadn't realized truly how handicapped I was. I guess I'm what you call a chronic, no pattern, different levels of pain, from almost constant shadows to mindnumbing pain. Always tired, never truly focused. Several times a month. I was at university by then and suddenly I could dedicate myself to my studies and life(!) in a whole new way. Imitrex doesn't work that well for me, I seldom get severe pain immediately, but longer insistent low or medium spells. Imitrex will take it away for a day, but then it returns. Cafergot has worked all right, after I learned how to measure it out. Starting with two and adding one after half an hour if it is bad, sometimes one or two more after additional time. This seems to have a more long working effect, but can make me very nauseous. Lots of water, fresh cool air, a cold towel on my forehead, soothing music. That's my additional prescription. I'll visit you often. Love, Asa
Asa <>
Thursday, July 06, 2000 at 16:28:44 (EDT)

Hello My name is Dean and I'm a CLUSTER PATIENT!!
Dean Enos <>
torrance, caH USA
Thursday, July 06, 2000 at 15:57:27 (EDT)

I've signed in here before but it's been a couple of years now. This site is still the best. If only we could get some doctors to look at it once in a while. I'm in my 18th year with clusters. I've tried all the old medicines. My Doc uses me for experiments. The only thing that works is Imitrex nasal spray, sometimes. The cost is restrictive, however and it almost makes my heart explode. My cluster usually last 4 months and changes seasons about every 5 or 6 years, from winter to summer. I'm not able to work except for myself. I'm an account and part-time farmer.(Self-employed) It seems that companies don't want someone rolling around on the floor in their offices. Hang-ups. Stupid doctors and drug companies taking advantage of sick people!
James <>
Cameron, TX USA
Thursday, July 06, 2000 at 07:31:49 (EDT)

WOW! Thanks for a great site. I was just diagnosed with CH and feel like a "normal" person reading all of your postings. It is amazing to know that I am not alone. And that someone can relate to what I am feeling. Currently taking Imitrex and Verapamil. Hoping for the best. I am planning on trying the water treatment as well. Thanks again. I look forward to visiting again!
M. McConnell <>
Eugene, OR USA
Thursday, July 06, 2000 at 02:22:35 (EDT)

Hi, I am glad to find this site. I am in the middle of a cycle, I haven't had one for at least two years. I started having cluster headaches about 25 years ago when I was in college. I've only been taking fioronal when they strike. I hope can convince my doctor that there are better alternatives.
Cathy <>
Plainville, MA USA
Tuesday, July 04, 2000 at 18:59:57 (EDT)

To all CH sufferers - I hope this helps some of you. I have sufferred from CH for probably 10-15 years. I was just diagnosed in September '99. I have attempted to research as much information as I could on the subject and have found a variety of therapies and treatments. I have used oxygen,lidocaine, imitrex, predinesone, and as much codeine as possible. The codeine was somewhat effective during the bout I had in '95 but this last time the pain bore right through it. The imitrex was the most helpful after I started taking allegra - an antihistamine. Then I went to the "Specialists" and was given the Pred burst. I had also been told to stop the other meds (except Imitrex), but including the allegra. That burst zoomed me into another six week cycle of concentrated hell. One time while I was questioning the nurse who was conducting an experiment (for Glasco-Wellcome) I told her that the old doc who had checked me for sinusitis told me that I was suffering from "Histamine headaches -"the headaches that make strong men cry". Nurse Rachett (not her real name) informed me in a rather smug and superior kind of way that the old doc was outdated with his nomenclature and obviously hadn't attended any "Modern" seminars on the subject. As soon as the steroid burst was tapered down I resumed the alegra and refused to take the preventative she was prepared to offer me (valaptritan or sumatriptan??). If histamine triggers them, could an antihistimine prevent them? Two weeks ago I was playing golf and after a couple hours in the heat and humidity the dreaded demon headbanger began making its' presence apparent. A tightness and slight but building pain behind one eye. The drooping eye started as well. I took out an imitrex that I had kept in my wallet for just such a dreaded occurance. I noticed what I thought was some minor relief for a while, but it didn't clear. When I got home I took my last alegra and within an hour or less the pain, though slight, was gone. I refilled a prescription I had immediately. Several days later I was at work and One began builing again. However the alegra was at home and I had missed my dossage. I stopped at a pharmacy and by chance happened to know the pharmacist. He gave me one of his alegra- Ds and within 45 minutes the tightness, pain, and initial drooping had left. I have read many stories and testamonials from CH sufferers but can't recall many, if any saying that anti-histamines worked for them. They have so far worked superbly for me and they have relatively no side affects. I also heard the other day that it was discovered that probably over 80% of migraine sufferers systemic cause was various allergies. I haven't found substantiation for that yet, but based on my experience, realizing that migraines and clusters are not the same, yet they do "cross over" (they did for me)I tend to believe it. I think the reason the allegra is working well now is that I am not taking other meds such as decongestants as I did in the past, which I now believe further aggravated the problem. Not that the anti-histamine + decongestant (Allegra-D) would not work in combination (might work better) rather the decon+pain relievers seemed to allow the condition to get worse until the bouts came with severity and daily regularity. I should know better after the summer's long heat whether this really works or will I need to return to Nurse Ratchett. Has anti-histamines worked for anyone else? dk.
David Kocbus <>
Detroit, MI USA
Tuesday, July 04, 2000 at 01:37:38 (EDT)

I just came across this site, looks good. I am 42 and have been suffering from CH for 24yrs. I have not tried to many meds. The imitrex didn't work very well. I've been in this cycle for about 2 wks. Would like to know how well oxygen works for some of you. I tried some meds. years ago, but nothing worked. I just got tired of taking them, until Jan.of 99 the CH got very bad, so I tried the imitrex. The CH seem to be getting worse with age or maybe my tolerance for pain is getting lower the older I get.
Jerry Forry <>
Rocky Mount, Va USA
Monday, July 03, 2000 at 20:43:08 (EDT)

I have just found your site and I am convinced my husband suufers from cluster headaches. He started at age of 17 and 15yrs later is still getting them. I am interested in talking to people in the uk, more so; and also showing him he is not alone. Which by this site he can definately see Thankyou.
M. Collett
Bath, Wiltshire England
Monday, July 03, 2000 at 18:50:39 (EDT)

Hi, my name is jeff, I've been in hell for about 10 years now. All my doctors thought I was crazy up until about 2 years ago when he prescribed stadol ns. It takes the edge off so I don't waste my head on the floor anymore.
jeff kowell <>
indianapolis, in USA
Monday, July 03, 2000 at 16:48:58 (EDT)

I first had cluster 2 years ago and it just happened again
Rod Smith <>
High Wycombe, Great Britain
Monday, July 03, 2000 at 14:05:52 (EDT)

I've only been suffering for the last weeks, after many scans and blood test, the nuerogolist have advised me that i could be suffering from Cluster Headahces. The terme Cluster was something new to me, but now having reads i'm not alone i feel much more relieved as like many other CH'ers the consultant first told me i could have some sort of Tumor, which of course was a very frightening thought, although the pain is at time immense it's also a releif. Steve.
Steve White <>
Fuengirola, Malaga, Costa del Sol Spain
Monday, July 03, 2000 at 10:34:18 (EDT)

Hi, I have suffered from cluster headaches for many years, and I feel as I am going to give up.I thought that with age they would go away for good but it seems they will be with me till I die. I have to take the Imitrex shot almost every night. I am getting these attacks for the last four weeks, they go away and return.These headaches have me very depressed and before the Imitrex came out I was given Morphine shots and not even those would help me. I had tried to commit sucide a couple of times as I couldn't take the paiin anymore, they would last a mouth. They still do but with the Imitrex shots it has really helped me. I cannot take the pills as I cannot take the pain for too long I can't keep still, I cry scream just wanting to end it. I just needed someone to relate this to and hope that one day there will be a cure for these. Thank you for hearing me out and good luck to all those like me.
Monday, July 03, 2000 at 00:05:37 (EDT)

I've been batteling the Devil for about 13 years. Cafergot at the onset, seems to provide the best releif. I'm currently learning the Bio-Meridian MSA 21 system, and as a practioner hope to find a homeopathic remedy to send the devil back to hell...
Mike Yust c/o F.A.S.T. Medical <>
St. Louis, Mo USA
Sunday, July 02, 2000 at 23:44:15 (EDT)

Hello fellow sufferers. I didn't know about this site until 3 days ago & I think it is great! I am 35 years old and have been suffering from clusters since I was 20. I always get them on the right side, never the left. I am in a cluster phase right now, am am currently trying somthing that my doctors hve never give me before: topirimate everyday and maxalt when the demon strikes. However, the Maxalt is very expensive ($105.00 for 6 pills) and my insurance does not pay for it) my doc did have samples. The topirimate helps me some. Has this helped anyone else? what about the Maxalt? All I know is, there are time when I am rocking in the middle of the floor that cutting my head off has to be better than the pain we feel. Someday, maybe they will find the miracle drug for us all, till then,we just wait & hope.
Jonie <>
Middletown, Md USA
Sunday, July 02, 2000 at 16:21:29 (EDT)

I have had cluster migrines for the last 36 years. I have tried many types of medicines and relaxation with no positive results. There is no certain pattern for my headaches and just a couple of sure fire triggers. I am really at my end of tolerance. I found this site and hopefully I will meet someone who understands
Josie <>
Beloit, WI USA
Sunday, July 02, 2000 at 11:57:09 (EDT)

I am have been in remission for 1 year and 7 months. And, while I thank God for every day that goes by without this devil-I will be back. While the remission is great-it scares me too-I was used to 1 year remissions...then enjoyed a 3 year remission-but the cycle after that about killed me....and, if it didn't I was ready to. I am still so afraid of the next attack I still visit this site. If I never had another attack for the rest of my life-I would probably still visit this site-the pain is so very incredible-for lack of a better word. Something you NEVER can forget. When I was first diagnosed with clusters about 10 years ago-I read about people slamming their heads into walls and onto floors-and can they stand to add to this pain- but, now I know why we do it. To change or stop the unrelenting, maddening pain. I hate to admit the things that I have done from the pain-I have slammed my head against the floor, walls, furniture. By the end of a cycle, I am up to 16 (or so) barbituates a day....and still trying to walk, talk and function-and every cycle I am forced to function-even though I am so loaded with pain killers...a horse on the same amount of drugs I take would probably die. I cannot believe that they have not found a cure or even a cause for this foul disease yet!!!! Give just one politician "the devil" and I bet it is cured in a year. Well, we can all pray-it can't hurt any(more) Take care all- Joey
Joey Lynn <>
Lacey, WA USA
Sunday, July 02, 2000 at 03:03:00 (EDT)

I have been a sufferer of cluster headaches for almost 15 years and I would love to hear from anyone who is taking Lithium and has had a reduction in their headaches
Sunday, July 02, 2000 at 02:36:30 (EDT)

I would like to add to my previous entry this morning. I felt the shadow of an attack upon me and I had my wife put 20 drops of lidocaine into my nostril while lying down in 5 drop increments. After each 5 drops I snorted it deep inside, and it did abort the attack. There is hope after all because imitrex is in short supply due to my insurance reluctantly giving me 2 pokes p/day. I remain optimistic as I know time will tell. Im into a cycle strong and it can only get better from here. To those of you in pain now, please keep a chin up and remember we really do understand the intensity of your pain.
mike henry <>
otsego, mi USA
Saturday, July 01, 2000 at 12:53:28 (EDT)

I dont want to repeat everyones response to finding this site, but this site is almost as much a relief as imitrex is to me. I have suffered since i was 21 and im now 33 and entered another cycle. fortunately it has been 2 years but they are back with a vengeance. This site is so fascinating I think i have read every page. And since im on 100mg of prednisone per day i have alot of time to spend on the computer when I only sleep 2-3 hours a night. Ive been lucky enough to find a neurologist who has taken a special interest in me because im his worst case yet. yesterday he gave me some lidocaine, which was put to the test last night. I was lying down with my head tilted back and my wife put the 15 drops in. No such luck. Thank god for imitrex. Speaking of imitrex anyone got some for sale? my insurance company wont give me but 2 injectors daily, and there has been 4 in my arm in one day at times. This current cycle is my first run with imitrex and I want to say it is golden. Ive been on every drug I think except lithium. Its comforting in itself for my wife and I just to read the words of others here and feel an understanding among sufferers. Second to the pain is explaining our Disorder to friends and co-workers. As you all know words cant describe our pain and agony. Ive been out of work all week and my boss seems to understand at this point but time will tell. For those who have not heard of it, there is a National Headache Foundation in Chicago. My neurologist has been communicating with them this week on my behalf. They are a excellent resource for people with questions on CH's. Ive been so blessed with so many things in my 33 years of life, but I think clusters are the price that Im paying for that. One last thing, will everyone please get to the media link icon and email them all requesting exposure and air-time. I have emailed them all more than once but remember we have strength in numbers. A couple of years ago I think 60 minutes did a segment on CH. I think it would be nice for co-workers and peers to finally understand our battle with the beast. Im hoping to be out of this cycle soon, but if anyone out there wants to talk anytime please feel free to contact me.
mike henry <>
otsego, mi USA
Saturday, July 01, 2000 at 09:33:44 (EDT)




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