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 December 2001. Thank you for your continued active involvement in this site and keep those guestbook entries coming!



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My wife found this site the other day while I was off dealing with the pain. I have been suffering with CH since about the age of 15 (32 now). The first real diagnosis I got was 4 years ago. Until then, it was lots of searching for little info. I've been fortunate...I got the last 2 years off...pain free, but November 14 started a new cycle. Over the years, these are the common factors I have noticed. Cycles usually start at the end of the year and are of erratic length. I usually get 1 killer a day, every other day, progressing to 2-3 a day, and then tapering back off for about 3 weeks. Some cycles follow that pattern several times. For 17 years the pain is alway in the exact same spot on the right side. The ones a couple of hours after falling asleep start the cycle, and then move to earlier in the day, but I am an extremely eratic episodic. The only thing I can consistently say, is that I never have first thing in the morning CH (inevitably dooming myself to one tommorrow). As far as treatment, I have always been a bit of a spartan. Since nothing ever worked, and I had to go for 13 years dealing with the whole thing by myself, I have developed little mind tricks to pass the 20 - 90 minutes it take to pass. One of them is to pick a state, and then geographically make your way through every other state in the US. It doesn't make the pain go away any faster, but it is a lot more socially appealing than screaming and cursing people on the street. Brisk walks sometime help, and of course we all know about rocking and fidgeting. I fear my tricks may be getting worn out though, as this cycle has been the most intense and strange ever. Since I don't know y'all yet, lets just say I ahve had to redefine what a 10 feels like 3 times this week. That's enough rambling for now. Thanks for this site!
Richard Grack <>
Mooresville, NC USA
Friday, November 30, 2001 at 23:55:23 (EST)

I was just previously diagnosed with Cluster Headaches. I am 53yo and have just begun my dances with the devil. After reading several accounts, of which I was crying my eyes out because I know the pain and suffering that those people have gone thru. I now know the full meaning of the word 'suffering'. Having just been introduced to this site, I will not add any horror stories but rather spend most of my online time famaliarizing myself with this site. Thanks for being here when no one else was.
John A. Tucker <>
Chiang Mai, Thailand
Friday, November 30, 2001 at 22:52:09 (EST)

I have been a sufferer of CH for about 10 years now, I am a 36 year old male. I am somewhat unique in the sense that I have no stories about medication with the exception of elavil and that I only took for a very short time. I am in the military and because of my job I am seriously limited on taking any medication. If I taek any medication besides aspirin and very few others I am relived of duty for security reasons. So, to prevent being relieved of my duties, I have suffered through months of hell with no relief at all, the pain and lack of sleep take an incredible toll after several weeks. The series leaves me weak and damn near incoherent. I sympathize with each sufferer out there and I have literally shed tears reading some of your stories, especially those of the young sufferers. God bless each of you and I cannot express in words how much this web site has helped me and my family cope.
Dan K
Ramstein, GER Germany
Thursday, November 29, 2001 at 22:42:58 (EST)

Finding this web site was like finding a new friend. Finally there are others out there who can understand what this "curse" is really like. Most people I encounter have never heard of "Cluster" headaches and have no idea what kind of pain comes with the attacks. I first started to experience these attacks in my late teens. The cycle came in the fall lasting 3-4 weeks. Always at night---always on the right side. After many visits to different MD's I finally got the correct dx. My current regime is Imitrex and O2. This does not abort an attack but it does lessen the duration. I am awakened anywhere from 2 to 7 times a night. With the O2 the attack usually lasts about 10 minutes. Even one minute is too long with this type of pain. I am now in my early 50's and I fear this will never go away. I am now going to try the water treatment and see if they also helps. Thank you for this site---now if I am awake at 3am I'll feel like someone is out there for me.
Sharon <>
South Bend, Ind. USA
Thursday, November 29, 2001 at 22:25:55 (EST)

I am 37 years old and have been having these devils for about 20 years. After many years - through experience or others I have found the following for me: 1. The headaches come in the fall/winter only. 2. I relate them to lack of sun/light or the change in the amount of sun/light. 3. When I get them - very deep and quick breathing can really help get rid of them quickly. 4. Last couple of years I have been trying to sit in front of light in the AM (when I get up) and in the evening when I get home from work. Not sure of the success of this, however they have seem to help prevent them and get them to go away for another year. 5. Some of the migrane medication [Advil Migrane] seems to help prevent 2 out of 4 of the headaches I may get during one night. I feel lucky that I only get once a year [4-8 weeks] and I have gotten better and getting rid of them or making them less painful. Good luck to all of us!!
Rick Jackson <>
Chicago, IL USA
Thursday, November 29, 2001 at 21:55:12 (EST)

Been a CH head for 10 years. It's like being Jekyl and Hide (pardon the pun)
Doug <psientist@videotron>
Montreal, PQ Canada
Thursday, November 29, 2001 at 15:24:33 (EST)

I just found this site in a search that I undertook because I am in a cluster period now. I am 47 and have had clusters since my early 20s. Thankfully, my cluster periods have shortened from about two months throughout most of my adult life to about three or four weeks in recent years. Also, I usually now only have one cluster period per year instead of the former two. But during the cluster, the headaches are just as bad as ever. I am sure most of the readers here know just how bad they are. (Of course, if I had one now, I would not be typing.) Maybe some day I will outgrow this completely. I understand that some do in middle age. Good luck to everyone.
Thursday, November 29, 2001 at 11:37:15 (EST)

Gidday,My doctor,showed me this site,and it made me relize i am not alone.I have suffured from clusters for four years now,im 32years old.The first time i got one i didnt know what the hell it was,I made my wife take me to hospital i thought i had a tumor because it was so painful,the doc sent me home after waiting 2hours at 2am with 2 panadine which they did nothing.This continued everyday for 6 weeks, i was having 2-3 attacks a day,i had cat scanns done only to reveile nothing was wrong inside my head.After seeing heaps of docs,i saw a Neurologist,and he said i had a condition called cluster headaches.He then put me on inderal40,After the longest 6 weeks of my life, of the most intense pain i have ever had. they stoped,Approx 1 year later it started happenning again,Worse than ever 3or more attacks per day/night starting behind my left eye i would feel a slight tweek and within minutes i would be a complete mess,The pain behind my eye would intensify into my temple region & down to the back of my head,like electric shocks or someone staabbing a needle through my head,i would be screaming in pain,scratching & punching the wall while i tossed in bed,crying to my wife i cant believe this is happening again,kill me put me out of missery please i cant take this again,of course my wife Jenny would be so worried about me but there was nothing she could do!!! I was popping mersondole or simurlar tabs,like the were going out of fashon.I would have an attack that would last up to 3 hours,then 2hours later i was having another one. Finally a doctor gave me CAFERGOT,but i was taking so many my wife got worried about the dangers of this drug and started hiding them from me,this didnt last long as once we had friends over and as usual i was in the bedroom having a cluster,I wandered up to the lounge looking like total shit in my undies,green sweeting & in total pain,and in front of everyone said give me my fucking cafergots now,which is totally unlike me.It freaked everyone out. That year they lasted around 6 weeks again,making me miss christmas hols,new year and affecting my work as an arborist.So down the track another year and the clusters are back again around xmas missing it all again,But that year i was introduced to SANDOMIGRAIN a preventive.After about 3 weeks they began to help,i would feel one coming on and they wouldnt be as bad.So now its 2001 and the clusters started early this month{november}.This year im having 1-2 attacks a day,servre pain again but mainly at night this year,Sandomagrain has not helped this time,So im popping heaps of cafergots the only thing that seems to help until the next one,This year they are lasting 2-3 hours,and im waking in the middle of the night in extreme pain again,crying bashing the wall,pushing on my left eye&forehead,for me its allways on the left.Im in the 4th week this year and its driving me crazy as well as my wife. So cafergots ease it for me,but the sarger continues,stay stong to all sufferers out there.There might be hope one day,as for now im getting ready for my attacks tonight,Thanks for listening to me.Good luck to every cluster sufferer,bye.
Adam Wright <>
sydney, nsw Austalia
Thursday, November 29, 2001 at 02:04:21 (EST)

I found out about this site by clicking on a link. How lucky I was. It is totally amazing to me to realize that so many people unfortunately share my pain. I am a 29 year old married mother of four and I have suffered from these headaches since I was 15 years old. It scares me to think that one of my children may get them. I was diagnosed at 22, that is 7 years of not knowing what was wrong with me and as a teenager that is quite scary. The first one I ever had I had a friend sleeping over and I woke her up and begged her to take me to the hospital because I thought my head was going to explode. Well over the years they just got worse and worse and last longer and longer. Nothing works, and I feel so bad for my husband and children when I have them, they try to do things for me to make me feel better and how can you tell children 8, 6, 3, and 1 that there is nothing they can do? Poor babies. Right now I am in remission but I can tell they are fixing to start, not sure how, just can. They do not just come at night while you are sleeping either, it is an all day thing. If you are away from home it is really scary, because you do not know how you are going to get back. I can not drive while I have them. My old boss used to keep a pillow at work for me so that I could lay my head down in a dark room when they came on and would continue to pay me for my time while I was doing it and even after I went home. He also paid over $200 for an eye exam and glasses for me hoping that would stop them. Of course, non sufferers do not understand but they try. When I wake up at night with a headache, I go into the bathroom and turn on the water scalding hot, fill the tub and soak in there until the headache goes away and if the water starts getting cold I do it again until then. That is the only thing I can think of to do so that I do not wake the children. I get black eyes, slurred speech and blurred vision and it stays for a few months, worsening daily until at last the headaches go away for a couple of months. This is my experience and I am sure that I could write more, but I guess that is enough for you to get the idea of it. And to all you fellow sufferers, I feel for you, but unfortunately today I learned that there are so many......... Good luck and God bless.
Tanya <>
Logansport, La USA
Wednesday, November 28, 2001 at 23:10:28 (EST)

I have been having Cluster Headaches off and on since 1978. At the present time I am having 3 or 4 per night. I have been a periodic smoker over the years and at one point I quit smoking for 6 years, and during that time I had no cluster headaches. I wish I could quit again.
Gary L. James <>
Camas, wa USA
Wednesday, November 28, 2001 at 15:53:43 (EST)

I have just found the site and wanted to sign in. I am just over a "cluster" that lasted six weeks. The longest cluster I have had was seven months (with no sleep!) so my headaches seem to be getting better as I get older. Now it seems to be three years between clusters instead of every year. As soon as I get an "aura"(initial symptom of headache) I jump in the shower and let the water pound my neck where the headache starts and that seemed to help a lot. For those looking for help I suggest deep relaxation, deep breathing, (oxygen!), a biofeedback technique I learned from the library. When I went to a clinic and they hooked me up to the computer to teach me biofeedback, they were surprised and said "Oh, you already know how to do this!" I used to pace around and beat my head on the wall, but I finally learned to relax during the attacks and that helps. I recommend also drinking a lot of water. I had been trying to be sure to drink lots of water this summer and I think this has helped the headaches to be less painful and last shorter periods. I also have schizophrenia and depression and I think my medications (Zyprexa and Prozac) have helped to lessen the clusters. Life is a lot better to think they will only come every three years compared to every year. My suggestion for people who are having a hard time communicating the intensity of the pain to your doctor, is to make a copy of a picture of a skull and a skeleton, or a picture of the muscles of the body, (such as you might find in Gray's Anatomy) then use colored pencils, red, orange, and yellow to draw how the pain feels in your body and your head. After going to the VA for two years about my headaches I was suicidal and finally got an appointment with the neurologist. I showed him my picture of my headaches and he took it and left the room, he soon came back with another doctor who asked me, "Why did you wait so long?" I had the headaches for six years and finally found somebody who would treat me. There was no way I could describe in words the pain behind my eye, in my sinus, in my teeth, so I drew a picture of it. There is a good book about headaches by some doctor in Boston, (I'll go back to the library to get it and post the details later) who suggests that the headaches are related to the hypothalamus in the brain. The hypothalamus regulates blood pressure, temperature, and the production of nuerotransmitters in the brain and is related to Depression. I would recommend that anyone having cluster headaches stop drinking completely. I have recently passed my ten year anniversary of no alcohol! Everybody knows alcohol kills brain cells, but the common response is "well it's only ten thousand cells, and you have four billion brain cells." But what if those ten thousand cells are in your hypothalamus? Schizophrenia? Depression? Migraines? Cluster headaches? I don't know of any scientific study to back this up but that is my opinion. If you have cluster headaches please stop drinking alcohol!!! After a while, the craving goes away and you will feel better generally. Finally, please don't give up. If you start to feel suicidal, go to the emergency room and tell the doctors!!! They will listen to that. Even a week in the mental ward is better than being dead!!! Good luck to those who read this and God bless you!!!
David Sidebottom <>
Pueblo, CO USA
Wednesday, November 28, 2001 at 05:57:40 (EST)

i have had ch since the age of 29. i am now 44 .i cant think of anything more painful .it must be some kinda curse .the only relief i can get is 2 cafergot tabs and oxygen at the start of the attack. it does not always work.i take 40-50 cafergots a week and have for 10 years and am not dead yet .imitrex works but not all the time and is too damned expensive.oxygen sometime will work by itself,especially with the early am wake ups. really tired of it all.somebody help us !!!
jerry wright <>
noble, ok USA
Tuesday, November 27, 2001 at 21:46:40 (EST)

I have beeing suffered from clusterheadache since I was 29 yearsb old
lillian andersen <>
hørsholm, denmark
Tuesday, November 27, 2001 at 15:28:32 (EST)

I've suffered now for 11 years. This site is great! I now realize I'm not alone. I've tried over 22 different meds and I'm still holding on. Maybe someday someone will find a cure. Until then I will use this site for whatever relief I can get..........Thanks
Barry Sachs <>
Westminster, Md USA
Tuesday, November 27, 2001 at 10:39:24 (EST)

Great info, will need more to read it all, am at work so had better get on.
Chris Bridger (Mrs) <>
Oxford, Uk
Tuesday, November 27, 2001 at 06:32:57 (EST)

Greetings from Oz! Am in the middle of a real shocker at the moment. Gee, its hard to cope, isn't it, when a red hot poker is gouging your eye out on a daily basis. Lets hope someone comes up with a cure sooner rather than later.Do others find hot humid weather brings CH on, and how many of us smoke??
Lyn <>
Sydney, NSW Australia
Monday, November 26, 2001 at 02:10:30 (EST)

Bobo the Clown <>
Beverly Hills, NJ Australia
Sunday, November 25, 2001 at 16:56:28 (EST)

I just found this site and read through most of it - excellent! I posted a message about my experiences...please read and reply. Thanks to all...
Scott Hardy <>
Calgary, AB CANADA
Sunday, November 25, 2001 at 11:34:26 (EST)

MARGIE, YES ,YES, YES, Just been reading the water treatment thing , and you're 100% correct.I'd worked it out with my wife ,as she would often offer me a glass of water during an attack[ for want of not knowing what else to do ,poor woman!], and it helps .However, I was not aware of the drinking it all day method. Yeah ,sounds logical, I'll certainly try it ,I've high hopes for this, THANKYOU [MUCHO!]Hey ,Email me if you like , it'd be groovy , love Larry xxx
larry <>
newquay, cornwall uk
Sunday, November 25, 2001 at 09:25:42 (EST)

Hi , is there anybody in my area out there who'ld like a chat sometime ?I was really pleased to find this site , as i felt so bloody alone with this thing!!I've been a CH sufferer for 18 years or so, and am currently going thru one of those times.As usual , this time of year in soggy England!Having just returned from Spain I can say that the more stabile climate appears to help. Shit ! , here we go again , I'll have to continue later, see you , love , Larry xx
larry <>
newquay, cornwall uk
Sunday, November 25, 2001 at 08:40:20 (EST)

Hello, I live just outside of New Orleans, La. I would like to know whether anyone knows the name of a local Dr. familiar with cluster headaches. A couple of years ago when I was in a cycle I found this site, or another like it, and there was someone there from Mandeville, I think. This cycle is a bit different. The precursors in the past have always been a feeling of something 'popping' inside my head behind my eye and then a strange feeling. This time around it has something to do with my neck. In the past my neck always did get sore in addition to my temple, over time. I ruined my gum over my incisor from picking at it, you all know how that goes. This time around I'm able to head them off most of the time by laying my head back over the edge of something while I'm laying down. I awoke last night at around 2 a.m. and had a doozy for about an hour. When I went back to bed |I laid with my head hanging over the foot of the bed. I slept all the way to 7:15. Today I've been fighting it all day. I read the last time, a long time ago now, that exercise can help. I have dumbbells so I've been doing curls with them all day when I felt that a headache was starting was imminent. It has helped. I've been having CH since 1986. They went into remission in Jan. 1990 when I started walking every night. They stayed that way, in remission, for years until a couple of years ago. I feel for those of you that get them multiple times a day and can't stop them. I used to not be able to. Now I can stop some of them. I've never been 'officially' diagnosed. But I did go to a doctor 14 years ago. He was no help.
Ernie Menard <>
Laplace, LA USA
Saturday, November 24, 2001 at 22:08:19 (EST)

Hi, people, great site[at last!], QUESTION, I,ve been taking beta-blockers for about a couple of years , i guess , [inderal].Although they by know means take it away , i think maybe they reduce the severity. Comments please love & understanding, Larry xxx
larry <>
newquay, cornwall UK
Saturday, November 24, 2001 at 19:21:22 (EST)

I've had "aberrant cluster" (that's what Mayo's calls them) headaches since about 1982. Prednisone regimens helped. But finally I have a doctor who is willing to try morphine, and it has helped me about 90 percent.
Carl Vining <>
Pueblo West, CO USA
Saturday, November 24, 2001 at 17:50:30 (EST)

Just want to say Hello really.I haven't suffered from clusters for the last 6 years but I am currently in a cycle of them. I feel alone as I am a woman and the majority are men. I have had them for 5 weeks so far and they are getting progressively worse, up to 2 hours every night. My poor long suffering husband gets so worried that I will end up doing myself some serious harm . I only keep going in the knowledge that they will stop at some point. It is difficult to function when I have 2 young children to look after in the day. I try not to be too irritable with them, but I'm so tired. It's comforting to know that I am not alone
Heather <>
Isle of Wight, England
Saturday, November 24, 2001 at 15:19:10 (EST)

Have suffered with cluster migraines for the last 8 years .
Graeme Rivers <>
Dannevirke, North Island New Zealand
Saturday, November 24, 2001 at 03:47:55 (EST)

In Short: Chemical Sensitivity!!! Chronic Fatigue Fibromyalgia Male Born 1954 Sick at 30 last worked 33 miss months at a time sometimes. Thankful I'm alive to experience this hell that is healing :-)
Carey Sullins <>
Waco, TX USA
Friday, November 23, 2001 at 15:41:22 (EST)

45 yr. old male CH's for 26 yrs, in every conceivable cyclic combination / Very happy to have found this site. Hoping I can learn from the rest of you folks.
Ethan Avignon <>
Atlanta, Ga. USA
Friday, November 23, 2001 at 14:07:19 (EST)

I am 46 years old male. I started suffering cluster headach since 1991.
Ravinder Grewal <ravindergrewal>
Brampton, Ontario Canada
Friday, November 23, 2001 at 10:34:39 (EST)

hi every one ,because our dam pc threw a wobbly cost us a new modam i don,t know if our first entry got through i,m lucy it,s my hubby chas who has the clusters . had them going on seven years now, they used to rule our lives completly till he got on the right medication witch worked for he is on verapamil,amitriptyline,epilim chrono i was supprised at how behind we seem to be here in the uk . it took six years before my husband was finaly told what he had wrong with him. it was just one long nightmare which wouldn,t go away. reading everyone elses messages is like finding a long lost family member. or someone who knows exactly what your going through.the list of things they said was wrong with him was never ending they did his sinuses all this did was make him snore wich he never did before, ended up taking all his bottem teath out still nothing doing finaly blackpool victoria hosp pain clinic saw him in one mother of an attack,it went on over two hours yas they finaly sent him to the fazackerly neouro unit and after ten minuits of giving his symptoms out and what sets it off,,they tell us what is wrong with him.i was rather duebeouse at first i said we have been all over the place brain scans every six months different docs ,, but they assured us what it was .and thank the lord they got the medication right after sleeping six years in our old rocking chair because he was too affraid to go to bed..we got our first nights sleep, it was heaven we could,nt beleave it was mornning. he still gets the shadows, and the odd attack does get through but nothing like he used to be another thing i would like to say .. i could not beleave the amount of people in the usa that can,t get the medication they so badly need because they have not got medicle insurance with not been able to hold down a job through illness. my husband said if they hadn,t sorted him out when they did he would have topped himself by now.. i am sure all the uk people must realise how lucky we are to have our health service.well thats my little piece written so bye for now everone from
lucy <>
st annes,lancs, england
Thursday, November 22, 2001 at 20:58:49 (EST)

I always get headaches and back pain ever since I turn 6. It stoped for a year and came even worse it sucks
Brendan <>
Collingwood, Ont Canada
Wednesday, November 21, 2001 at 10:06:59 (EST)

Hello fellow CH sufferers. I am the wife of a CH sufferer who has been getting them for 23 years now and I have once again visited your site after a brief CH break of 2 years. Again, my poor husband is in hospital after an impossible 8 week ramp up to the demon (Imitrex only goes a short way)and as always I get a great sense of relief to know that we are not the only ones suffering and that there are many of you who understand what my husband is going through. I love what you have done to the site, I am taking printouts to the doctors in the hospital because (and typically) even though the doctors claim to know what CH are, I can tell they have no idea. We are trying a new treatment of slow release anaesthesia and morpheine injections so we'll see how we go. John is 43 now and I can only pray that they will begin to subside as he gets closer to 50. Take care all of you, my heart goes out to all of you who are in the middle of an attack right now. Stay strong. Thank you and all of you CH suffers for giving me the reassurance that once again we are not alone.
Paula Martin <>
Sydney, NSW Australia
Wednesday, November 21, 2001 at 06:15:30 (EST)

I feel so alone,like I am going to die. I'm scared to go to sleep at night, knowing I will wake up thinking it's a nighmare, only it's not. After a few days, I feel like I'm can't bear it anymore, no one understands, and I feel like a wimp, because prople can't imagine. I always hear "I suffer from migraines", if they only knew that I'd gladly swap for a regular migraine so that it would be over in a couple of days instead of lasting for weeks. Sometimes when I go to the ER, they make me feel like they think I'm an addict just looking for drugs. If they only knew how pain full and nerve racking it is. Sometimes I wish I could die rather than face it again tonight or tomorrow. I'm so glad I found this sight, because at least now in the middle of the night when it is so lonely and scary, maybe I can talk to someone. My husband has been wonderful through these bouts with me, but now he had cancer of the brain and lung, and I can't bare to wake him up, because he needs his rest so bad. It really makes for a long and scary night, and I stay up so late because I'm so afraid of waking up with the excruciating pain. I'm so thankful for finding this sight, because now maybe someone will be here to share this together. I don't know anyone personally who sufers from CH's, so most people don't understand. My daughters have watched me shake and cry so many times, they can always tell when I'm having them even though they don't live at home any more. After a few weeks, I just feel lke I can't handle it anymore. I haven't tried the imatrex injections, just the pills, but they give you such a limited supply at the time, I'm always paying for extra Dr, visits just for more prescriptions. Thanks for having this sight, now maybe I won't feel so alone, by sharing my experiences with someone who really undersands. hese headaches are a nightmare that people cannot understand unless they experince tham ans I wouldn't wish this experience on my worst enemy. If anyone out there can help me, I need some advise on how to prevent them if it at all possibe or at least to make them occur less often Thank you for this sight, and having the opportunity to share with someone who really understsnds. Thank you for being there!!!
Virginia Cooper <>
st. stephen, SC USA
Tuesday, November 20, 2001 at 02:04:40 (EST)

Hallo from Italy, I have been suffering for some 14 years and now I kind of control the cluster with anesthesias and sumatriptan. Each cluster lasts now 6 weeks (instead of 12) and come every 18 months (instead of 2 a year). Yesterday we had our 1st national meeting thanks to Riccardo who is our "big chief" and we are probably setting up our own national OUCH. For the relief of everybody. I am ready to share my experiences in treatments, if you are interested. Francesco
Francesco <>
parma, italy
Monday, November 19, 2001 at 15:42:28 (EST)

I am not sure if my headaches are cluster, but that is what the doctors have decided they are. I have had them for about two years. Nothing, but Fiorinal, seems to work. I need to get off that, but the pain is so terrible. Help!
Shelby <>
Salina, KS USA
Monday, November 19, 2001 at 14:58:07 (EST)

I am 37 and have been having tension, migrain, and cluster headaches for a long time now and have'nt had any support so it was really nice to find this site. I've found that because you can't see a headache alot of people don't understand how bad it hurts. I wish these people could feel one for a minute or two. Then they might have a little more compassion The pain and the nausea are awful. It is comforting to know that there are other sufferers who understand. Thanks, Andrea.
Andrea <>
Quincy, WA USA
Sunday, November 18, 2001 at 07:07:48 (EST)

Have been suffer from Cluster Headaches since I was 16.
Michael Wilson <>
cypress, ca USA
Saturday, November 17, 2001 at 16:25:37 (EST)

I am the wife of what I believe to be a cluster headache sufferer. My husband has had these headache cycles for as long as we have been married (18 years). Because he was always told they were sinus headaches, he refuses to go back to the doctor for help. He is on his second week of headaches that almost completely debilitate him. I found this website while I was looking for something, anything I could get to help him. This time they are some of the worst he has had. Its very hard to watch the person you love the most go through this 3-4 times a night and not be able to do a thing. I was hoping to find something he could do home to get some relief since he will not go back to the doctor. Any suggestions would be greatly apperciated. Thanks
kathy <Paul12@msn>
cleveland, OH USA
Friday, November 16, 2001 at 10:21:04 (EST)

Hello, I suffer from head pains not sure if they are cluster headaches or what. I am a recovering drug addict that has had mental, brain pain i call it cause it 's like my brain hurts, but I know the brain has no feeling, that is what Dr's tell me anyway. I wake up in the morning with a numb brain feeling, it's like a band is wrapped around my head and squeezed so tight that it wants to POP! My ears ring constanly my eyes are foggy most of the time and I sometimes see tiny black spots with circles of light around them. I take a medicine called Wellbutrin right now that seems to help but I am always thinking and going so fast, I can't relax or get confortable at night when it's time to sleep. If I don't get sleep at night my day is terrible I sometimes want to just cut my neck and head open to take out the pain. I don't know if there are any people on here that have recovered from drug use that have the same problems but if so please help! I have been to many Dr's and I have had a MRi and a C.A.T. scan and the only thing found was a mild case od sinus infection. I am afraid that I have damaged my brain and these scans just are not picking up the problem area. I have heard of an EEG scan recently and I am thinking of seeong what it would take to get one done, anybody had this done let me know what it showed please! I hope by telling you I am a recovering drug addict hasn't scared you away from me. I have talked to many, many, many meth users and none have had the same brain problems as what I have. I am just hoping that my brain is not damaged, but do I have to live like this forever is the question. I wish someone new the answer!! I own a Motorcycle business and every day is a struggle, I can't think well I can't just be. Just Be! I don't want to live this way forever. I am very depressed alot of the time and not knowing a cure or finding something that will heal me has made me think terrible thoughts of suicide, I am scared and i need some help, please anyone that has any info let me know I would really really really appreciate it!!!!!! Thanbk You!
Charlie bradford <>
Algona, IA USA
Friday, November 16, 2001 at 04:06:07 (EST)

I too, suffer from migraine/tension/cluster headaches. The only medications that have ever worked for me ar fiorinal or fioricet. My mother also suffered headaches, as does my youngest daughter. I have heard they are hereditary. The one thing I do know is that they are very debilitating!!
Dianna <>
Atlanta, GA USA
Friday, November 16, 2001 at 02:38:26 (EST)

Wow! I didn't realize that there were so many people with CHs. My husband (age 31) has had them for approximately 12-13 years now. I have been with him the entire time and know the agony, frustration, helpless feeling of a CH spouse/support person. I just didn't realize that I was alone. The quote from the woman whose husband suffers from CH on the home page could have been written by me. It is even more difficult now that we have two small children that have to be taken care of and don't like to be awakened in the middle of the night to go to the ER. My husband doesn't even wake me up anymore, unless he needs to go to the ER, because there is nothing I can do. Imitrix spray is not working this cluster. The pills aren't helping either (Darvoset). We've been to the ER/urgent care twice in less than a week because the headache just won't go away. It stays intense for hourse. The Demerol injection is the only thing that has helped this time, which causes my husband to throw up for an hour and then finally pass out! We can't get into the neurologist until next week. The Imitrix injectors are not covered by the insurance and even if we paid out of pocket ($150 apiece), I'm not convinced that they would work. The GP won't prescribe anything else because it is "out of his league". Any suggestions, comments, advice would be welcome. I'm just about at the end of my rope. The only thing that I can look forward to is that we are 3 weeks into the cycle and therefore that much closer to the end, which has always come in the past. Thank you for this site and the information. It helps to know that someone understands...especially when the doctors don't (or at least don't seem to care).
Calley Sciabica <>
Irvine, CA USA
Friday, November 16, 2001 at 01:21:31 (EST)

HI everyone out there, what a truely wonderful sight this one husband is the sufferer of this gremlins lurking we call it.after six years of not knowing what the hell was wrong with him ,when he finaly got to fazackerly nuero hospital and they put a name to it, it was great. the treatment he started has worked so far.he,s on verapamil, amitriptalline,and epilim chrono, for six years he slept in a rocking chair at night too scared to lie down in bed.another thing that triggers it off is really strong smells,and he can,t stand smokey places like the pub. when i found and read this sight i was sat in front of the computer saying out loud to myself my god this is just how we were i was elated telling my hubby there are other people who have the same thing as you. living with someone with cluster headaches is a nightmare because you feel so hopeless because there is nothing you can do to help them .i myself have sat on the other side of the bathroom door crying for him thinking why us .till they find a treatment that actually works for you it literally runs your life . i hope many more sufferers find this sight because it is like coming home lets hope we can keep the gremlins in the cuboard whare they belong .. from st annes, lancs england
lucy <nancy lucy 2 shoes@>
blackpool, lancs england
Thursday, November 15, 2001 at 20:31:03 (EST)

I have been having intense headaches for 24 years. Have had good long bouts of remission but was always diagnosed as having sinus infections. Every spring - Every fall to the Docs. I Have not been diagnosed as having cluster headaches but after reading Mike's story, "Been there . . . Doing that!" I have never heard the pain described so much like my own. Alot of people say "Oh yeah I get headaches accasionally." I say "Believe me - You don't get these headaches!" Because I cannot function at all, just leave me alone and let me rock. My description of the pain is a RED HOT Poker going into my left temple! Always on the left. I am going back to my doctor today who has told me "These are not Sinus Headaches." - finally someone to help me!" After reading this Web sight, My husband said "Oh my God thats you!" We've been together 26 years this year - he knows me and my pain! Thanks for the the info!!!! Sandra
Sandra <>
Howell, MI USA
Thursday, November 15, 2001 at 16:19:25 (EST)

Hello, I'm 32 yrs old and have suffered from migraines since my late teens. Just lately they have changed to cluster migraines and we're yet again trying another medicine. This time it's Verapamil. Today is the first day of it. I cross my fingers that this one will work. I'm the Mother of two girls and wife of a very loving man. I'm glad I found this cite.
Toni <>
Lincoln, IL USA
Wednesday, November 14, 2001 at 20:17:59 (EST)

I am Marcela ´s mother, she is 13, and started with CH at 11,I have no word to tell you how much she suffers, eventhough she has been very brave and strong, she doesnt´t want to look for more help, but I refuse to see her suffering like this, so if any of you could send information about the best doctor or clinic in the world I would apprecciate it, no matter where or how much it costs. Lately, her atacks have increased in amount and intensity, can somebody please tell me how to emotionally survive and to bear the suffering at nights and the fear? I´m about to fall apart, why her?, why not me?, how much longer? Please help me and talk to me. Oxigen is starting to stop helping, I´m afraid that so medicines will harm her, or that her heart will stop at any time.This is the firs time I write, I just found the sight Please help mee¡¡¡¡ Marcela (the mother) My adress in Mexico City is Asunción 115 casa 4 Col. San Jeronimo C.P. 10200 Mexico D.F.
Marcela Meroño <>
Mexico , D.F. Mexico
Wednesday, November 14, 2001 at 11:32:56 (EST)

I just want to say that i am glad I found this site because for a while there I thought no one understood the pain.
Naomi <>
ewing, nj USA
Wednesday, November 14, 2001 at 09:11:57 (EST)

I have had clusters for over 14 yrs. I take predisone and use a heating pad over my right eye and around the back of my neck on high.. usually disappears within 10 minutes and are not as painful if caught in time. I get them every 2-3 yrs all times of the year. Day and night s lately 5 times a night but only lasting 10 minutes with the heating pad. I am in week 4 of my cycle some times lasting 8 weeks.
John Lesperance <>
peru, Il USA
Tuesday, November 13, 2001 at 21:05:43 (EST)

I'm a relative newcomer compared to most of you guy's. Been suffering for approximately 3 years but only recently diagnosed. Before I was diagnosed I used to live of Paracetamol. Another episode started yesterday and have been prescribed Methysergide - hope this works!! Just found this site whilst trying to occupy myself and the fact that I now know that there are many other people in a similar situation seems to be helping right at this very moment as I type this. - Will be back to visit again. N.B: My description of pain is: 'Like a red hot ball rolling around my skull over my right eye' - thought I might share that with you all!
Greg Mallinson <>
West Yorkshire, England
Tuesday, November 13, 2001 at 16:42:24 (EST)

I have just been diagnosed as a cluster head sufferer, after years of suffering. i have got a lot of information from this site and it is nice to know i am not alone.
Sharon Mckay <>
Glasgow, Scotland
Tuesday, November 13, 2001 at 08:05:57 (EST)

I had a really bad cycle 5 years ago that stopped without treatment or medication. After I stopped smoking in May this year they came back. Coincidence? Now I have been diagnosed and am taking veraprinal and zomig. I work OK and have not had a CH away from home until this weekend. I find the echoes, the hot sensations, the ear noise, the face pain are bearable, just odd. Until I found you here I thought my diagnosis was odd, no one I know has ever heard of CH, so I call them migraines to friends and collegues. I'm off to look at the nedical knowledge before I cal the doctor again.
Heather <>
cambridge, UK
Tuesday, November 13, 2001 at 06:13:28 (EST)

Since breaking my back in '88, I thought the pain could not get worse, until I was involved in a car accident. Then the headaches started, they started once or twice a month then they came sooner. Getting to the point in which they came weekly then days on end I still have not beaten the pain but at least I can sleep
Paul Wagner <>
Reno, NV USA
Tuesday, November 13, 2001 at 01:40:10 (EST)

Great site , Im 46 yr old male lived with this for 20 yrs and it doesnt get any easier , seems like it,s getting worse sometimes. Took my Doctor 10 yrs to decide it was CH I was suffering from . I read about all the different medication some of you guys are on , all I get is an Ergotamaine inhaler . As a cop it,s not easy to cope when i get an attack at work , all i hear is " it,s only a headache ", yea if only . Im going to have a go at the water treatment see if it works , try anything to get rid of the beast . My attacks occur anytime day or night and vary in frequency from 30min to 2hr duration . Im in the 3rd week of attacks and as alot of you mention im not looking forward to going to bed for fear of another attack. I reckon im going to come here on a regular basis from now on , thanks for chance of putting my thoughts into words.
Charlie <>
Reading, England
Monday, November 12, 2001 at 17:02:23 (EST)

They began in 1976, every 3-4 days, I had no idea what was going on. After the obligatory tests for brain tumors, the doc's said I had Cluster Migraines. I went on all the traditional medications, but nothing worked...ever. they just came back again and again. Over the next 10-15 years, the time between cycles ramained the same (every 6 months, spring and fall, for about 6 weeks duration, 3-4 per week, 1-2 hrs each), I gave up alcohol when I was in a cluster and tried to treat them with excedrin (3-4 tablets) at a time. Often it worked if I caught it early enough but eventually even that failed. About 4 years ago, I tried Imetrex (25mg.), but found that after a while it wasn't enough, so I increased the dosage to 50 mg. and since then I have had reasonably good success. I had been Cluster free since July 1999, but they came back again last week..ugh! The Imetrex (50mg) is working well to relieve the pain, but the frequency has increased to 2 headaches a day, usually in the AM and after I have gone to bed. If I catch it quickly, it may last for 1/2 hour, which isn't bad compared to what I had experienced before. So for those of you are just starting out with this strange affliction, hang in there, try might just work for you. Drink lots of water, stop smoking and drinking, and keep on top of the literature and web postings. You never know, you just might find that works for someone else may work for you also! Regards,Tom (25 yrs and counting)
Tom <>
Marblehead, MA USA
Monday, November 12, 2001 at 12:13:57 (EST)

Hello, thanks to all for this site. We all know how hard it is to talk to people about our sufferings, unless they experience the pain themselves. Only those who suffer can really understand how these headachs affect our lives. 17 yrs now, dealing with the pain, will it ever stop???
Todd Danforth <>
Jamestown, NY USA
Monday, November 12, 2001 at 09:44:40 (EST)

hello everyone, my name is mike, I am 22 years old and I am suffering from cluster headaches. I got my first cycle when I was 17 and I have had a cycle ever two years.
mike <>
corpus christi, tx USA
Monday, November 12, 2001 at 00:28:57 (EST)

I just found your sight by accident.I've had what some neuroigist call cluster,some call tension, some migraine and some just think I do it for the drugs. Since the age of 19 years old, when I had my 1st concussion and went into a coma for 2 days, I have had the pleasure of being a guinea pig for every damn quack out there,(26 years now).There is not a day that goes by that I wouldn't chop my head off just to make the pain stop.I hope maybe this site can shed some more info,I think I have read and tried everything posible, but I haven't giving up yet, I don't know why.
Sunday, November 11, 2001 at 18:06:19 (EST)

I am a LONG-TIME migraine sufferer.I've spent (literally) hundred of dollars on meds. to find something that will work.Fiorinal C1/2 finally did the trick,however, the cluster,(or "rebound-headaches") are a constant problem! Especially since I am a single mother with 2 kids: one has severe Attention-Deficit,and an Autistic son! I found a really simple way of combatting these "rebound",(or cluster) headaches: ADVIL! Another cure is ENO.For some reason, the orange-flavoured seems to work better.BUT: it works better,(4-me), if I put more ENO in LESS water. More added is not a danger, unless you have to watch your Sodium intake. You can make up for that by drinking more water afterwards.Even if you DON'T suffer from migraines, ENO is for headaches as well as gas,heartburn, etc..!! I REALLY recommend this,and I wish you all relief if you DO try it!
Jana <>
Hamilton, ON Canada
Sunday, November 11, 2001 at 09:37:50 (EST)

Hi there, I found my headaches began to get less frequent after drinking lots of pure, fresh water. Doctor's are diagnosing pills when in many cases the simple solution is to re-hydrate the body. Our brains are dehydrated when we do not drink at least 2 litres of water every day. I hope this helps some of the sufferers here - if you are not already dring lots of water start now - Good Luck !! Carole Aulterra Rides the Waves at
Macs <>
Dunoon, * Scotland
Sunday, November 11, 2001 at 09:14:20 (EST)

Just found this site today. My father was a CH sufferer and, despite the fact that they are not heredetary, I became cursed with them as well. I'm in week three of a series right now. Thought I had them beat. My last series was almost three years ago. That was my first experience with oxygen therapy. It definitely cut the duration of individual headaches down, but did little to shorten the length or "brutality" of the series. Dr. has me on Verapamil now. It had me headache free for two days, then they were back with a vengence. There is always a light at the end of the tunnel. My father no longer suffers from CH. He has been free of them for about ten years now. Hang in there everyone. You're not alone.
Dave Kroll <>
McNaughton, WI USA
Saturday, November 10, 2001 at 23:10:00 (EST)

i would like to know what to use to get rit of these headachs. please!!!!!!
mel kruger <>
warroad, mn roseau
Saturday, November 10, 2001 at 18:16:42 (EST)

Hi. I'm a 32 year old mum of 2 littlies and just started to have these terrible head pains nearly 3 months ago. Have been to doc twice and was diagnosed with stress then migraine. Only realised what I actually have after looking on the net. Guess mine aren't so bad after reading some of your comments as mine only tend to last 10 - 30 mins (so far!) But even that is bad enough. They started off only at night but now I can get several day and/or night. Haven't had a proper look at the site yet as there's so much to see but I will in time! Guess I'd better get myself back to the doctors (armed with a few web-site printouts) and see what they can do. I'll be back to see what's going on here soon. Meantime, good luck to everyone and many thanks for this site.
Judith <>
Elgin, UK
Saturday, November 10, 2001 at 17:04:35 (EST)

I found this site today and am sorry for all the suffering that is going on. I too get cluster headaches. Mine cycle every 1 1/2 to two years. I've had these for 14 years. My last episode was two years ago and lasted 11 1/2 weeks. I took so much imitrex that I had rebound headaches and the imitrex didn't even work at the end! I am in an episode now and started immediately on a prednisone taper and covera. For the two weeks I was on pred. I didn't get a CH but as soon as I went off I got one. My dose of covera was increased from 180mg to 240mg and for one week I was pf but I got them again, two a night. Oxygen and imitrex. I just started on 480mg of covera (under Dr's care) and we'll see. I hate how these cluster headaches come along and take away a big chunk of your life. I don't want any more pain. It hurts so bad! I wonder what tonight will bring. Sometimes I am afraid to go to sleep.
Karen Richards <>
Saturday, November 10, 2001 at 17:03:13 (EST)

Hi. I had headaches since when I was 8 and they came back every year till about a 2 years ago (Yay!). Now I'm 16. Then last night wham! They were the worst I've ever had. Now I'm really afraid because I've got School Certificate (US equivalent of SAT) in a week and that I might have to deal with that kind of pain for next few weeks. But to others keep in there!
Sae-mi <>
New Zealand
Saturday, November 10, 2001 at 16:55:29 (EST)

Excellent site. Thanks for the great info and links.Same old story. have had clusters for 30+ yrs. Misdiagnosed for the first 20. Thank God for Oxygen, works for me 9 out of 10. Glad to see more people are aware of cluster headaches. When to emerg 2 nights ago (surprise attack and no oxygen)Not only did they know what CH was, they gave me oxygen fairly quick and all was well. This would not have happened 5 yrs ago.Unfortunetly there are still lots of GP's that do not understand CH.Will copy stuff from this site for my Doctor at his request. Others might consider doing the same. Thanks again. Valuble and factual info and great links.
toronto, on canada
Friday, November 09, 2001 at 23:06:33 (EST)

my dad has cluster headaches, he gets about 5 to 8 a day. need any information that anyone has on different treatments. his dr isn't trying different things with him and he has to go to a VA hospital to get medications, and know the hospital isn't giving him enough to last him a day. can anyone help us!!
Felicia <>
Friday, November 09, 2001 at 22:15:17 (EST)

Howdee High. I just started my cycle after 3yrs on 11-04-01 I am impressed with how much more help online there is now! Your site has been helpful & I'm sure I'll be back. I'm a 51 year old male, have had clusters on & off for about 30 yrs. now. Thanks to All Who Helped (with this link) Fellow CH Suffer Kevin
Kevin L. David <>
San Jose, Calif USA
Friday, November 09, 2001 at 09:16:22 (EST)

i have been suffering from cluster headaches for 20 years. same story as others. my protocol is verapamil, oxygen, imitrex, and demerol. for the first 15 years the bouts came almost 13 months apart like clockwork. then starting in 1995, they came 2 years apart and now i am in a cluster period for the first time in 3 years. i guess i should feel lucky. i was wondering if anyone has had any luck with sertotonin reuptake inhibitors like prozac. Or maybe bombarding your brain with an overload of serotonin (ie, ectasy pills) to see if it shakes up the brain enough to break the cluster period.
reid berman <>
Winter Park, FL USA
Friday, November 09, 2001 at 06:31:37 (EST)

i am 36 years young, have sufered ch for 24 years and did not know what they were for first 18 years now i do i thank god that i am not mad. i would love to hear how anyone lives through them.
John James Rippey <>
London, England
Friday, November 09, 2001 at 05:42:11 (EST)

Would like to talk to people who have complex migraines which parlize them for periods of time.Some think they ack like mild seizures. Don't have much pain.
DL <>
Mesa, AZ USA
Thursday, November 08, 2001 at 21:20:38 (EST)

My name is George I came to this place a couple of months ago. I have had clusters for 12 years. It will be two years next month that I had my last clusters. I have them every two years, lasting two to three months. I thought I might look up clusters on this computer of mine. I did not dream I would find so much information and all in one place. I cannot stop reading. Every night when I get home after the family has turned in I come and read, some times my wife reads with me. I am ready for the clusters when they hit now. I spoke with my doctor and have started on verapamil and have imitrex ready. I also ordered oxygen. It is sad that so many have this, but yet I am glad not to be alone. My doctor tells me I am his first cluster case. I thought it was time to introduce myself. It sure is good to know there is a place for me.
George <>
Greensboro , NC USA
Thursday, November 08, 2001 at 20:36:35 (EST)

Dear John, This is not meant to scare or alarm you but simply to be aware. I'm sure 98% of my peers will agree with what I'm about to tell you. It is NOT normal to just suddenly develop Cluster Headaches at age 48. Please See ANOTHER DOCTOR AS SOON AS POSSIBLE. Please look at our site: (where I read your message.) Those of us, like me, who are in our 40's, have been suffering with these since our late teens/early-to-mid-twenties. Again, Cluster headaches are NOT the type of thing that just suddenly develops late in life. I urge you to see another doctor or, at very least, you need an MRI of your brain to rule out the possibility of something more serious. I wish you well. Lisa Collins
Lisa Collins <>
Westlake, OH USA
Thursday, November 08, 2001 at 13:02:15 (EST)

Hello, I am a male 48 years old and have been suffering with cluster headaches for over 6 months now. My doctor diagnosed the problem as migaineous neuralgia which I think is another term for them. I found your website today and have found it to be incredibly useful and reassuring to find that it is not uncommon for alcohol to bring on the symptoms. My doctor had never heard of anyone who suffered after just half a pint of beer!! Although I have not investigated your site fully as yet, what I have seen has been very good and I look forward to delving into the site in more detail.
John Thompson <>
Wolverhampton, UK
Thursday, November 08, 2001 at 09:43:32 (EST)

I have just been told i suffer from Cluster Headaces, for three weeks just thought it was a headace now i am suffering
Beryl <>
Consett, DH England
Thursday, November 08, 2001 at 08:29:28 (EST)

Hi there, this must be the greatest website in the world. Being 38 years old and having suffered with C.H. for about 10 years, I have researched this "Devil" for some time without much success. Trying to explain to many doctors what we suffer is like trying to get water from a stone.I did find Imigran which is my saviour when in a cluster period. Reading through stories of others certainly helps and one does not feel so alone. Currently going through a phase which started on Sunday last week after 15 months of bliss just reading and understanding this condition helps a bit, especially on how to stretch the Imigran. ( great idea ) Thank you for the great website and support. Leon van Vuuren
Leon van Vuuren <>
Wunsiedel, Germany
Thursday, November 08, 2001 at 07:32:39 (EST)

Hi, My name is Maritza, I've been suffering from clusters for 20 years. I am happy to have found this site and all of the unfortunate sufferers. Finally people who know what headache pain really is. I am looking to join the family, so that I can share my horror stories and temporary cures. Thanks for having this support site available.
Maritza Nocella <>
New Jersey USA
Wednesday, November 07, 2001 at 23:29:56 (EST)

I'm very happy that you have gone to the time and trouble to provide this website. It has taken me 14 years to find out what I suffer from and just to make me special I get both migraines and clusters!! (Lucky me). Last year I thought I had beaten the headaches and let face it "headache" is not really an appropriate word. I've beaten the migraine, that would appear to be soley caused by chocolate. So no more chocolate!. But to my utter dispair after a pain free year the pain returned. This time its more refined because there is no migraine, but lordy lordy it hurts!!. I have found some release though and that is the knowledge that it will go away and sometimes the tablets work and sometimes even in mid attack, say week 4 I get a break!!. Thanks again for providing some education into this truly awful swine of an affliction and good luck and be brave to all cluster heads, I certainly know how you feel!! Best Regards Justin Worden....
Justin Worden <>
Reading, UK
Wednesday, November 07, 2001 at 12:26:55 (EST)

Hello fellow sufferers! I am a 46 year old female whom has been suffering "clusters' since I was 25. Like you all, I didn't know what these headaches were- my physician gave me Tylenol, and sent me for C scans and all kinds of tests. I couldn't make him understand that these were not normal headaches, but something terribly diferent,& Asperins and Tylenol were not the answer!! He finally sent me to a neurologist whom said I was the "classic example" of a Cluster sufferer. My headaches come like clock-work...every 4 years. Each episode lasts 2-4 months and then they go away untill 4 years later...exactly!!! My question is WHERE did these come from and WHY!?! There was a program on TV last nite (which is how I found out about this site), and they talked about Cluster headaches (for 4 minutes out of an hour program....) and they talked about how they think the problem arises with the hypothalamus in our brains. Well my question is still WHY?!? Why are we different??? NO ONE I know can understand the horrible pain with these headaches..they figure these are like some stress headache, take some asperin and you'll feel fine! What's the big deal Arlene??? GGGEEEEZZZZ... Why are we victims of this terrible-terrible demon? How can we make people understand? Fortunately, where I work, we have an on-site Physician whom does know something about these headaches, and he can translate some of what I go through-to my supervisor. But my co-workers and friends just cannot comprehend. My last episode was this past February to April... 3 months of hell. I will expect to get them again in 3 years from now, since they attack every 4 years. It is so nice to know that there ARE people out there who can relate to the extreme pain that we suffer. I have never met anyone in person who has these particular types of headaches, I couldn't imagine that there would be anyone else out there who could even begin to understand what they feel like. Thanx, Arlene
arlene dziedzic <>
lusby, MD USA
Tuesday, November 06, 2001 at 12:50:03 (EST)

I monitor this site from time to time for my friend who has been suffering with CH/hemicranial headaches for the past year. He is currently on temporary disability due to being incapacitated as far as driving goes. He started with 5 or more of these headaches and so far oxygen will halt the headache occassionally but for the most part he sits and rocks while holding his head and applying pressure to the left side of his face and eye. He has an appointment today for biofeedback. Has anyone tried this and are you having good results? I have tried home type remedies of this for my migraines but Zoemig seems to be the cure for me right now. I can't imagine having a headache that has a term of 30min. to 2 hrs. I have seen my friend suffer through his CH's and know I don't want to go there either. Thanks for any information you may have to offer.
Johnny Pleasants <>
Greensboro, NC USA
Tuesday, November 06, 2001 at 09:15:41 (EST)

This is a SUPER site. I have been suffering with the Demon ever since I had my wisdom teeth pulled when I was 14; I am now 37. My bouts come and go with hopes that they will be gone for ever. Nothing I have tried seems to help. Luckily my bouts give me long breaks. Almost 2 years ago I had a CH during laser surgery for vision correction and the Demon left me for almost 2 years. But they came back after I moved to a new residence. I changed my diet to a low fat and drank lots of the water here and the headaches came back. I went back to "pigging out" and only drinking bottled water. They are gone again and it has been 3 weeks. Now just a little experimenting with these 2 changes to see if it means anything. If the water seems to cause them, I am going to have the Mayo Clinic in Minnesota do some work. I will keep everybody informed. Thanks for your support!
Mike Jarmuzek <>
Maple Grove , MN USA
Monday, November 05, 2001 at 21:35:00 (EST)

Hi: My name is Bill, and I am fifty-nine years old; soon to be sixty. First, let me say that I believe that I must be a little better off(if you can believe that anybody having cluster headaches is in any way better off than others) than most here in that historically my headaches come at approximately two year intervals, last about two weeks, and then, thank God, are gone (but not forgotten). Crazy, huh. Try explaining that to someone other than your wife or husband who has had to suffer with you. The first one happened when I was in my late teens. I thought it was a toothache. It wasen't until I was in my thirties that a doctor referred me to a neurologist. That was after two upper molars and a bridge, and no cavaties to blame it on. When I explained my symptoms to the neurologist he reached behind his desk and withdrew a large medical book from the shelf. He turned to a page, and handed me the book. He said my list of symptoms sounded like I was reading them from the book. He then, half jokingly asked me if I had, in fact, read them out of a book. I guess most people would find it hard to belive that someone could be glad that a doctor told them that they did have some weird malady, but I, at last, felt relieved that I wasn't the only person in the world suffering with this monster. Not that I would wish it on another being of any kind. I am currently about one week into this seige. Each time they start, after a couple of years, my mind searches for some other cause for the pain(the new seige always begins with, as I have read here, a shadow headache, and an apt description). Then in a day or two the monster slams down the door and stomps in. No guessing from that point on. So, in a nutshell, thats my story, and unfortunatly I gotta stick to it. But, if I'm lucky it will run it's course as it has in the past. God bless all of you that don't have it as easy as I.
Bill Truett <>
Yucca Vallely, Ca USA
Monday, November 05, 2001 at 14:50:25 (EST)

Hello. My name is Charles. I am 20 years of age and I have been sufferung with this curse for 2 and one half years. I am what you call a cronic case. Not one day has passed that I have not had to bite through a pencil. The only thing that has ever worked for me is prednisone (excuse my spelling). I would like to thank those of you who went out of your way to make me feel welcome as soon as you all did. It takes a lot of love to keep your heart from freezeing, to push on till the end. thanks.
Charles E. <>
Houston, Tx USA
Monday, November 05, 2001 at 14:38:06 (EST)

I am an Asian-American (Chinese) female who started getting clusters in 1974. I have episodic clusters and have kept track of almost every headache I've ever had. I never had any headaches to speak of before these started. They generally came every year and a half apart and lasted 2-3 months. I had CT scans and MRI's and the whole works. I don't know anyone else who has these, so when I tell people about them, no one really knows the pain I feel. I have not had "bad" episodes to speak of since about 1994, maybe only a few a year, but after taking Verapamil and prednisone for a short time, they went away for the last few years. However, this year,on Sept. 10, 2001, I started these again, and this has to be the worst episode I've ever had! I started taking the prednisone and Verapamil, but evidently not enough prednisone so I am increasing it to 4 a day and see what happens now. My worst one was yesterday when I awoke at 2:00 AM and had a "bad" one. It didn't seem to go away like my others, after an hour or so. It kept going for 12 hours! Finally, my husband made me go to the emergency room at the hospital. I took 4 prednisones all at once before leaving for the hospital. After 3 hours of waiting at the emergency room (as usual) if finally started to go away. The "residue" pain which I call it, which is the tenderness afterwards on the scalp, is still there. I now am taking 4 prednisones and 1 verapamil (240 mg) a day for a while, and then will taper off gradually. Most doctors don't even know how to treat these. The only one that was good was at the Cleveland Clinic back in the 1990's. If they don't go away after 3 months, I will have to go back there to see what can be done. I have never tried the Imitrex - sounds like good stuff! Thank goodness I found this site! Thank you for creating this for "clusterheads!" It is nice to know that other people suffer from this and can understand what I go through. My husband has seen me when I'm in this much pain and has "put up" with me for all these years! He really does do a good job trying to comfort me when I'm having these episodes. I hope I stop having these for good soon - I thought after age 50 they were supposed to be gone!?!?! Ha, ha!
Irene Lukes <>
Fairlawn, OH USA
Sunday, November 04, 2001 at 21:00:03 (EST)

Hello out there. Sorry to say that I`m happy to know that I`m not the only one suffering what I always knew was not a migraine as diagnosed by my GP. I thought it was all over and had forgotten the pain after more than 2 years of freedom. But, 3 weeks ago I got the pumping heart, a twinge in my right nostril and the vein sticking out in my temple. Oh god no, not again.... Yes, out of the blue I`m back in nomans land, never knowing when the next attack will get me. I`ve looked at this web site & will ask my GP for some medication. I`ve tried most over the counter drugs but to no avail. I find that applying pressure to my temple and around my scalp slightly relieves the pain but feel that a nail applied with a hammer to relieve the pressure would be fine at stage 10 ( kips ). I`ts 1am in the UK at present & I`m fighting off bedtime for fear of yet another night attack. I`ve kicked the alcohol and reduced cigarettes since its started up again, pain upon pain. Had chocolate today and I will probably pay for it later. Sorry to be so negative but its probably going to be with me for ages. The site has been interesting and hopefully I can get some help from my doctors after printing the medical info. Hope you all have a good nights sleep.... Mike Lapworth.
Mike Lapworth <>
Stratford upon avon, UK
Sunday, November 04, 2001 at 20:05:21 (EST)

I heard about this web site last nite on TV. I have suffered with C/H for 16 years. I do get relief using Prednisone. I start with 60 mg twice daily for three days and then begin reduction by 10 mg every three days until I reack 10 mg which I take for 2 weeks. Normally, relief in2 to four hours, but don't be late with the next dose. Usually after 5 doses cluster stays gone for a couple weeks, then here we go again. I'm afraid to keep taking Prednisone, but even more afraid not to!!!
Tom Rhodes <>
Cortez, Fl USA
Sunday, November 04, 2001 at 19:29:20 (EST)

I hate to say this, but it is actually great to find others who suffer from this debilitating disease. I've always thought that i was going crazy and that i was alone. I'm a 40 yr. old female who has suffered with this pain since i was 24 yrs old. they seem to occur about every two years, no specific time of the year, and last up to four months at a time. After hopping from doctor to doctor for what seemed like an eternity, i've at least found one that took the time to listen to me and not just blow me off. Compassion goes along way with me. He is just not sure what meds. to give me, this is all new to him, as well as me. I'm going to tell him about this site, hopefully he'll get a little insight on what's actually going on inside my head. I get headaches every day, but ones that are just painful enough to let me know that they are there. Haven't had a cluster since June of 1999. Hate being on the meds. I don't like being drugged up. I'm sure that I'll be back here again,it's good to know that I have somewhere to turn now, thank you for existing...Janet
Janet Kane <>
Great Barrington, MA USA
Sunday, November 04, 2001 at 09:24:08 (EST)

I'm french and suffering since i'm 18. I'm 32. I'm very happy to find this family. In our country the physicians don't know a lot about this disease. Last year i discovered for the first time the name of my disease. She was perhaps the twentieth, but she didn't say like the others, oh what you have is very strange : take some aspirin or things like that. For years i thought that i was alone. I didn't want to get married because i didn't want to disturb my wife. But she was so...She helps me a lot. Thanks God because of you. Esaie
Esaie <>
houailou, New caledonia
Sunday, November 04, 2001 at 02:18:18 (EST)

After suffering in silence for over 20 years it's great to find this site! Good Job
Stephen Stutz <>
Parker, CO USA
Sunday, November 04, 2001 at 01:39:46 (EST)

I'm going on a year and a half of pure HELL. It's been a long road. How do you explain our long , sleepless nights to our Employer? If they spent just one night at my house, maybe they would understand! Yeah Right. Brian Anderson
Brian Anderson <Flame81989>
Palmdale, Ca USA
Sunday, November 04, 2001 at 00:58:14 (EST)

I have had bad headaches for 19 years since a car crash. My doctor has been telling me it is just a headache, go away. Now i have just found out about custer headaches.
Martin Flynn <>
Exeter, UK
Saturday, November 03, 2001 at 17:16:12 (EST)

I have not been diadnosed as a C/h sufferer,the diagnosis I got was episodic paroxismal hemecrania or words to that effect, the consultant described it as not quite classic migraine (of which I already suffer from), not quite cluster headaches and not quite neuralgia but a bit of each.After reading the web site I find I have more in commom with all of you than I though and dont have as one Dr. put it just a fancy name for a headache, which helped me no end.I am so glad to find there are sympathetic people out there who know what it is like and it is not just another headache.I am female age 53 and the headaches started 3 years ago just before I turned 50.I have suffered from migraine since I was a teenager so I know the episodes are not migraine. The medication I am prescribed is for the treatment of rheumatism and is not effective.Thanks for being there I wish I had found you sooner.
Ann Russell <>
Patna, Scotland
Saturday, November 03, 2001 at 15:18:48 (EST)

Hi, My name is Matt. I'm 29 and suffered clusters since the age of 21. At first i thought i had a bad tooth and instructed my dentist to take out a perfectly good tooth (Something he did not want to do) However, the monster returned. Over the years i have seen nurolegists, oral specialists; i've had CT scans - been passed from doctor to dentist. One doctor told to me to stop being melow-dramatic when i was describing the pain. Eventually i found a doctor that was at least prepared to listen. It was her who suggested TN. So, i looked on the net and found that actually i was a classic cluster case. So, after seeing all these so called professionals i in the end diagnosed myself. Now me and the kind doctor work on trying new drugs. with me taking the lead because i have the konwledge. My pattern since 21 has been 3 month in remmision and then two months of fear and torture. It's worst in the Auterm...Matt
Matt Cox <>
Derby, United Kingdom
Saturday, November 03, 2001 at 07:16:28 (EST)

Hello....My name is steve,im 47 male and had classic cluster headaches since the age of 21 occuring only every month or so .....But has anyone had them triggered post-operatively??? 3 years ago the patern changed to daily headaches,the very same day I had an operation to fix my left knee cartilage. This must be significant but the doctors never believed me. Possibly an effect of the anaesthetic.. I find for my daily headaches a paracetamol called HEDEX EXTRA the only thing that comes near....but for the real head cringes nothing seems to work. This website is great, it totally blew me away when I saw my symtons written infront of me I have a name for my pain a way it helps a little.
Steve S <>
Manchester, England
Friday, November 02, 2001 at 16:07:59 (EST)

Im 31 yrs. old male who has just been assessed with Cluster Headaches. Its been nearly 6 weeks living with this condition. At first, I was having a toothache that led to this demon. I thought my tooth was the cause of the headache, so I went to the Dentist and had a root canal performed. Well the tooth is better but the h/a was still there. 4 weeks with this condition I saw a Doctor who prescribed me allergy meds, pain killer, and antibiotics. After taking these meds for 2 weeks I realized they were ineffective. Went back to the Doctor and now I'm assessed with C/H. Prescribed Imatrex injection. Skeptical about taking the Imatrex, but after a day later with a killer 2 hour C/H, my wife gave me the Imatrex. It worked within 5 to 10 minutes. Right now I started looking thru the Internet for answers and I found this Website. I feel comforted knowing others have this condition and that I'm not alone. It sounds like I have the typical symptoms that everyone else has. Usually 3 - 6 h/a a day, 15 - 30 minutes each and 1 that lasts for 1 - 2 hours. This is a terrible condition and it really has an impact on my life. Anyhow, after reading about others with C/H and the things that trigger theirs, I'm learning that those same trigs are causing mine. Thank you everyone for sharing on this WebSite.
Rod <ra72130>
Chino, CA USA
Friday, November 02, 2001 at 12:06:06 (EST)

I am the wife of a sufferer and in the 8 years I have been with my husband, this is the worst year for his headaches. He actually missed 2 1/2 weeks of work, which he has never done before. I am disabled and dependent on my husband for support for me and our 2 boys so this is frightening to me, but he couldn't possibly work. I feel so helpless to comfort him and worry about him killing himself. I do trust in Jesus and know He will take care of us. We also pray for Doug's healing, but haven't seen the manifestation of that yet. We are not giving up hope though. I am glad my hubby found this site so that he has support from people who really know his pain. Thank you.
Nancy Cardosa <>
Wyoming, MI USA
Friday, November 02, 2001 at 06:30:54 (EST)

I thought they were over! Started in 1985 and continued annually till 1998. Started again 2000. Have been on ergomatine pills,1 per day, since 1990. Maybe I have to go to 2 or 3 per day as others do. Sumitriptan injections work within 2-4 minutes, absolutely fantastic but so dear as you know. May try that tip on spreading out each syringe. Fortunately, mine only occur once per annum but would, like everyone else, find a long term cure. Thanks for this site.
Tony Cooper <>
Sydney, NSW Australia
Friday, November 02, 2001 at 03:44:17 (EST)

Thank you.
Doug Cardosa <>
GrandRapids, MI USA
Friday, November 02, 2001 at 01:12:15 (EST)

My name is Karen and I guess I am one of the very few women that suffer of cluster headaches. I've had these pains since I can remember and usually around the same time of the year. Today I had my first one this year. I have just graduated from school and started a new job about four months ago. School was very difficult to complete suffering these severe pains. I look back and I do not know how I did it; professors and even doctors always questioning if you are exaggerating to get away with special treatment. Today I went to my new doctor and since she does not know me she question everything I told her. After explaining and begging over and over she finally prescribe some Imitrex, which of course will not last too long. I almost got treated like a junky; and I guess the fact that I am a woman it makes it even more difficult for people to believe that I actually suffer of cluster headaches. In school it was a little easier to deal with these pains because of the time flexibility; as long as the work was done it did not matter if it was done a two in the afternoon or four in the morning. Scheduled exams and other activities, however, were what I really had a hard time dealing with. I guess instructors did not really see or understand why I could not perform as everyone else while I was in such much pain. Very few understood and where sympathetic towards my condition. Now with work I do not know how am I going to deal with this problem. The doctor did not even want to give me a note explaining my problem to my boss until she “verifies” with my previous doctor that I really do suffer of cluster headaches she said-you can probably imagine how long that will take. It is so degrading and embarrassing to be treated like that. I totally agree with those who believe that people in general should be educated regarding this disease, disability, a curse I do not even know how the refer to it. When I was leaving in the dorms I used to warn my neighbors saying "if you hear me cry and scream do not worry it is a headache attack. It will pass..." and I used to be embarrassed and apologize for it as if it was my fault. I guess my faith and knowing that everything happens for a reason is what helps me overcome and deal with this situation. I want to take this opportunity to thank those who put together and maintain this website. It rally is a relief to know I am not alone in this torture and that we can be there for each other. Karen
Karen <>
Thursday, November 01, 2001 at 21:54:20 (EST)

hi everybody after visiting this site a few weeks ago i was really amazed to read all the things that i did. it was if every thing i read had been written by me. the pain i felt, the things other people had gone through, the kip scale.when people say to you, oh! another one of your headaches its all exactly the same and to find out that drinking and smoking bring these headaches on confirmed my worst fears. being a man and brought up in the culture of working mens clubs and snooker halls in south wales its all i've ever done now you can call me a sad b-----d but its what i'm used to doing and as long as imigran works for me (and it does) i'll continue going out, i thought this thing is'nt going to ruin my life i'm not going to become a hermit and stay in all the time because of it. (anyway a little bit of pain is good for the soul it's the agony i don't like)i was a bit concerned to hear from a lady that imigran does'nt work for her anymore; thats the only relief i've got (as you all will know) and i realy would like to thank the guy who suggested not using the whole dose, but just using 2 mlg, it worked for me, and honestly i did'nt even feel the needle go in when i injected myself, the thought is worse than actually doing it well i'm going now , it's 1.32 am and i've not long come home from the club, well refreshed (otherwise i probably would'nt be typing this) maybe i'll type again next time i go out. take care
steve ogilvie <>
port talbot, west glamorgan uk
Thursday, November 01, 2001 at 20:35:27 (EST)

Hello. My husband and a 3 sons are headache/migraine suffers. My youngest started at age 6 and is now 8. He's been to about 10 different doctors and I've just decided that none of them can help him. Because of his age he can't take many pain medications and tylenol and motrin just doesn't help at all. I know what triggers all of their headaches and we can usually avoid them. I started using homeopath remedies with much success. If anyone would like to know more about that please ask me. Most people don't think homeopath remedies works. But all of my family have benefited greatly from them for all types of pain and symptoms. They are very natural and have no side effects and stop the pain instantly for us. Foods are a big trigger for my family and they MUST avoid sulfites and MSG, acidic food like oranges, processed corn is high in sulfites and so is red meat. They have to drink organic milk because of sulfites. I'm going to post a few sites that have really helped us a great deal. We mostly rely on natural foods and most foods have to be organic purchased from a health food store and even then they can't eat many of those processed foods either. We eat natural sprouted beans and organic rice with vegetable a lot. My husband can get buy with more processed foods than my little son who's body size is much smaller so he's not able to handle as many sulfites. Processed corn is extremely bad and high in sulfites. Frozen potatoes and potato flour is really bad. You can read more about this at these sites. Also I'm listing a sulfite group that helped me a lot. The MSG site also had a chat group and you can do a word search and enter headache and read much more. I don't get headaches myself, but I've seen my family suffer a great deal over the years and it's hell. My youngest and oldest son both react to mold. My oldest is better now that he takes allergy shots for mold but has to watch his diet. I'm getting my youngest tested next week and hopefully start the antigen soon. He is always worse when the mold count is high outside. Recently we found mold in our house under the trim in the basement and inside the walls behind the sheetrock so my youngest son, Ian, has been sick for several weeks this time and suffered many days with migraines. The mold is the worse for those two boys. My middle son has different triggers. He can't eat peanuts or chocolate processed with alkali. It's easier for him to avoid those things so he gets fewer headaches than the others. I kept a food diary for months to discover what Ian reacts to but I haven't been as diligent with the others, but they do very well eating at home but usually get headaches if they eat out. cheryl Chat group at:
cheryl <>
Thursday, November 01, 2001 at 16:56:18 (EST)

First time on this site -- it seems a heaven send. I am between a level 5&6 on the pain scale and terrified. I have had a couple of prescriptions; all of which made me throw up. Throwing up is not a option for any level of headache. I have been having headaches as long as i can remember. I have had months of beautiful days and weeks of lingering shadows. I am still here and happy to be. Surviving Mona
Ramona <>
Chicago, IL USA
Thursday, November 01, 2001 at 10:58:53 (EST)




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