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 January 2000. Thank you for your continued active involvement in this site and keep those guestbook entries coming!


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I just found this site this morning and it is nice to know that I'm not the only one. I had C.H's about five years ago, that was my first expierence with them. Then they just came back about a week ago. I have had migrane headaches since I was five years old and (30 now) nothing was in comparrison when I got my first cluster. My brother, who is a Chiropractor, has informed me that more than likely it is the digestive system that is causing the C.H's. Could be from the stomache on. Kinda like a cold in your system, and until it is taken care of it doesn't go away. So, some helpful information to anybody that is looking for a possible answer. Also, a trick that I learned when I have a migrane or a C.H. is to take a number two pencil and hold it in your mouth. Cross ways and gently hold it in your mouth, NOT BITE, usually behind the canine teeth. Your mouth will streach a little but when your laying there in pain and consentrate on not biting the pencil, but hold it between your teeth the pain lessens a lot! This has gotten me thru some really tough times. I hope that I've helped somebody out there. Good luck. P.S. The penci thing sounds really stupid but it works.
Dan <>
Aurora, Il USA
Monday, January 31, 2000 at 20:42:33 (EST)

Hello all. Just found this sight today. Wow I had no idea there were so many. I want to know how i got so lucky (yea right) First these are supposedly rare headaches and the female to male ratio is 1 to 6. Or I read 1 to 10 also. I am female so I am really in the minority. I have had the headaches for 21 years. First started right after my first daughter was born. I havent been legally diagnosed with cluster. Went to one doctor 1 year after they started. Went through the MRI"s and cat scans. Found nothing (haha) however i am blonde. The doctor diagnosed me with migranes. About 6 months after that i read an article in the paper from a docor who has a column in it and he described the cluster headaches and I yelled thats exactly what I got. Called my doctor about it and he says oh no cluster headaches dont last for an hour. so needless to say i never went back to him. But I know thats what I have. Even past the cluster quiz. So since i dont have a doctor i dont have any medication. I just suffer. I have only been awakened twice in 20 years with them. All of my headaches are during awake time. and only once or twice have they gotten so bad they I have paced and cried and wanted to die. Dont get me wrong, they are all excruciating but i just stop what ever i am doing and grab my temple, or above my eye(where ever the pain starts) and squeeze till it goes away. If its going to be a long one I will go in bed and turn my fan on and pray til it goes away. The longest one I have had is about 2 hours. Well thanks for listening.
Judy <>
Hazelwood, Mo USA
Monday, January 31, 2000 at 18:33:05 (EST)

Thank you DJ. The beast came back 1/18 and I started searching for info. This site has made this round so much easier. I've been episodic for 26 years. I have a wonderful caring wife who has been very supportive but it really helps to hear from other clusterheads. YOU have made a difference.
Jeff Williams <>
Stamping Ground, KY USA
Monday, January 31, 2000 at 14:24:29 (EST)

Have had clusters since I was 21, am 40 now. Don't know ANYBODY that has them.
jamie <shiels>
Arlington, Wa USA
Monday, January 31, 2000 at 13:59:39 (EST)

When I found this site a few months back I was just ending my first bonifide cluster headache cycle, was just about to meet with a neurologist that I think I'll work well with, and thought I had just survived the worst pain known to humankind. Since then I have been reading the MB almost daily and have learned so much. The first though maybe not the foremost is that the pain I was having was NOT the worst pain possible (I figure I was maxing out at a 7-8). My history in a nutshell: 47 year old female, married, one 13 year old son. I am a 25 year migraine sufferer who started having cluster symptoms about 3 years ago (opps, I said migraine and cluster in the same sentence). My youngest brother is a clusterhead though has been in remission for about 9 years. We think my Grandmother had clusters also. I have had several traumas to my head with only one being a minor concussion. I smoke and except for a short period in my early 20's couldn't pass for more than a whimp of a social drinker. There have been times reading the MB that my heart has just lay in my stomach. I feel helpless and so sad for those of you who must deal with this constantly. I cannot don't know what to say. Mostly I think of you and send hope. I have been wading through all the incredible info, making copies, trying to understand some of the more technical stuff. I have also laughed, questioned and cried. Thank you to DJ for making this safe place possible (I hope you find relief soon) and to all the rest of you for keeping it rolling. You are my heros, Thaya
Thaya Valentine <>
Mill A, WA USA
Monday, January 31, 2000 at 11:42:06 (EST)

I am a 45 year old male that has suffered from severe headaches since early childhood. Today, Monday, January 31, 2000 I'm at the end of a 5 day event. Until 1996 I have been missed diagnoised but now I take Indomethacin for treatment. Typically, my occurrences are 1 or more years apart and last for 4 to five days with or without treatment. The only exception was in 1996 when the pain lasted over 2 weeks and I was placed on Indomethacin for the first time. My pain always occurrs on the left side at the center of my skull and does not effect my eyes nor is the pain close to my eye area. During the 4 or 5 days that it last the pain never goes away; however, it varies in intensity. When the pain, which others have apptly described as an icepick stabbing in ones skull, is at its greatest intensity it jerks my mouth completely open and my entire body jerks. I have not noticed any other symtoms, such as, red eye, nasal congestion, etc. with these occurrences until this last time when I now have a great deal of congestion, however, I feel this is unrelated. I behave as others in that I can not remain still, I press the affected area, I rock, groan etc. and can not stop my mouth from jerking wide open. I hate being tensed up waiting for the next stab not knowing if it will be one second or five seconds or a few seconds away and how intense the pain will be.
Eddie Green <>
Central, SC USA
Monday, January 31, 2000 at 11:01:17 (EST)

This is the best site that I have ever found for information. I have been suffering with cluster headaches for the past 30 years. The clusters last about 4 months and will go away for 6 to 8 months before coming back. I will get 4 to 6 headaches a day. They are a real bitch but after awile you will get used to them and will be able to live a normal life. I have had good results with oxygen if I use 100% for about half an hour.
Ron Clawson <>
sandpoint, ID USA
Monday, January 31, 2000 at 04:03:14 (EST)

This site is great! I have some hope now, that I might find something to stop the pain. I've read alot of good stuff on here. Thanks for this site and thank to all the others that suffer for sharing on here. Bob
Bob Hatfield <>
Little Falls, MN USA
Sunday, January 30, 2000 at 22:40:26 (EST)

I'm glad that I was lead to this wonderful site. Now I know that I'm not alone or crazy when it comes to the CHA's. This is the best site that I have found that has answers to all my questions. I been suffering for the past ten years, with an attack every 18 months.
Greg Schoener <>
FT. Bend Co. , TX USA
Sunday, January 30, 2000 at 18:13:20 (EST)

Hello, I'm the wife of a clusterheadache suffer, This site is great-we've had so many questions. My husband has been suffering for them for about 3 years-probably longer but that's when he was diagnosed with them. After reading some of the other enteries I guess in some ways my husband is somewhat lucky-if you can call it that-his headaches only hit at this time of year Jan-Feb sometimes into March. Thank you again for this site-I know I will refer to it often
Joy Spayd <>
Birdsboro , PA USA
Sunday, January 30, 2000 at 15:59:46 (EST)

i was diagnosed with ch's about 2 mo ago by a neuro. have been having ha's for approx 4 mo 1 to 4 times a day. i have been to and read many postings on this site for the last 2 mo's. now i have some q's that have to be answered. please help if you can.
stephen <>
portlad, or USA
Sunday, January 30, 2000 at 06:25:48 (EST)

Greetings from D/FW area. I'm in construction and have moved around quite a bit. HA's started more than 10yrs. ago. I thought it was job related stress. Different Drs. in different cities gave differing ideas-stress, acute sinus infections, sleep apnea, etc. Prior to going thru surger for my sinus problems(which did help) I saw aneurologist who told me to come back after surgery and he would fix my HA's,if the surgery did not help. He was partially right. Sinus and sleep apnea are not a problem, but CHA's are. I came across this site yesterday and am glad I did. Looks like there are lots of good suggestions to take up with my currnt neurologist. I'm havinga really hard time trying to quit smoking. Dos anybody have any good input on the use of Welbutrin/Zyban? If so, was it effective in quitting? I can get a scriptthat my ins will pay for. It seems like ever since the first part of Ja., when we had a hell of a dust storm blow thru the D/FW area, my CH's have increased in frequency. Any thoughts on that? Best wishes for PFD&Ns to all, Chuck Spence
chuck spence <>
Dallas/Ft.Worth area, Tx USA
Saturday, January 29, 2000 at 22:45:06 (EST)

I am Bill's wife and am very destressed at the recent onset of cluster headaches he has been experiencing. He has has some of these headaches in years past but they were not frequent enough for us to find a name for them. Bill always thought they were sinus headaches and treated them as such. They usually went away after a bout of antibiotics. He is 52 and would like any information from others that will provide sympathy and or encouragement.
Billy G. Hill <BBHILL!>
Amarillo , TX USA
Saturday, January 29, 2000 at 14:37:48 (EST)

Hi, I have been reading some of the posts and it is like I have written them myself. I have suffered clusters since 1985 and I have been on Imitrex since 1998. Before that, I used an over the counter medication cocktail consisting of 2 Excedrin, 1 aspirin (325mg), and two antihistamine tablets(diphenhydramine 25mg). If I got to the headache early, this seemed to help most of the time. Nice to meet you all, and good luck with the devil.
Stuart Kucey <>
Valencia, CA USA
Saturday, January 29, 2000 at 14:17:41 (EST)

My migraine cluster headaches seems to rule my life. I can't reaaly sem to enjoy anything. I've had them about 20 years now. Last jJuly 29 I gave birth to my precious son and since then I have vowed to finally get some relief no matter what it takes. I just can't take that daily pain behind my eyes and in my head anymore. I feel like I'm the only one who knows what this pain is like. Julie Smith Decatur, IN
Julie L Smith
Decatur, IN USA
Saturday, January 29, 2000 at 13:37:42 (EST)

I have had CH since 1970 and getting a diagnosis was a long time in coming. Anyone that has never suffered with these just doesn't seem to understand and most doctors don't understand the intensity of pain. They fight you on the meds and then when you pay big bucks for health ins. and they deny treatment because meds cost too much. I don't understand why 2 Imitrex shots are $100.00 plus in this country and and just south of the border they are $20.00 or less.
Steven W. Sceranka <>
Roseville, ca USA
Saturday, January 29, 2000 at 00:37:50 (EST)

Just found this website today. I have suffered from CHs since I was about 16 (34 now) and my daughter started at age 10. Mine are predominantly in the summer months caused by internal body temperature and when I exercise. Also have triggers like alcohol. I don't get an aura before one they just hit boom and if I am driving I have to pull over. They are debilitating at times. The most I have had are ten in one day but they generally last 10 mins to 2 hours. I thank my lucky stars they don't last for weeks. I am a Canadian and the drugs are different in that country. My doctor there gave me a bottle of tylenol 3 with codeine that did absolutely nothing and I have not heard about oxygen before or many of the other drugs posted on this site. After the birth of my 3rd child the pain was so bad that my doctor gave me moraphine tablets. That seemed to have done the trick but, now they are back with a vengence. It seems that now that I have decided to exercise and have joined a gym I am getting CH's after each workout. Oh well, maybe I'm not supposed to be healthy. Anyway that's my history and I am just pleased that there are other people to vent to that truly understand how intense the pain is. Thanks for listening.
Milan, MI USA
Friday, January 28, 2000 at 19:15:42 (EST)

Found this site looking for relief. I have lived with these symptoms since a teenager. I am now 37. I find it hard to believe that in this day and age, we can clone animals, explore outerspace, perform surgery on unborn children, but cannot find a source of relief from these headaches. I feel I have missed out on so much of life due to the fact that my head hurt so bad that I could not function. I cannot imagine what it is inside my skull that could cause such pain. I function through work many days with an ache in my head that would floor most of my co-workers! Like most, the pain is concentrated behind my eye, normally the left, and radiates on that half of my face. My eye waters and droops, I get pale, feel pressure in my sinus. I also get a knot in the base of my neck going down into my shoulder. You know the moment you feel a slight pang behind your left eye what you are in for. I have also used Verapomil, Imitrex, Maxalt, Corgard, Depakote, and had trips to the doctor's office for a shot of Darvocet. At times they help, at others they relieve for a while and the pain comes back. It is comforting to know I am not alone, and am not crazy when I bounce from doctor to doctor searching for some relief from this beast. I have found that ice on the base of the neck does help with the knots you can get in your neck and shoulder. I am sick of taking medicine, and would like to find relief without popping pills all the time. My hat goes off to this web site! It packs a mighty wallop!
Dawn <>
High Point, NC USA
Friday, January 28, 2000 at 15:00:56 (EST)

Hi, I'm new and just wanted to say thank you for having this site. Last time I got these I was all alone in this battle. Although, I'm sorry that others suffer, it's nice to read that I'm not by myself in this. I started getting these when I was a sophmore in college. I've had about 14 or 15 bouts of them lasting 6 to8 weeks. Guess that makes me episodic (sorry about my's not my forte). I'm 38 soon to be 39 and mommy of 3. Sometimes that's all that keeps me fighting. I started about 3 weeks ago.. My headaches usually look like a bell curve with the peek giving me one right after another. Thanks for the Imitrex tip..I got some to use during those days when O2 doesn't work..I'm hoping that those shots will. Last night I was up 3 times with the pain...the last one the O2 didn't work so well. Anyway Thanks!
shirley <>
Friday, January 28, 2000 at 12:11:51 (EST)

The first thing I want to say is my heart goes out to each and every one of you "I FEEL YOUR PAIN" I started having these CH when I was a teenager. After going to different doctors growing up I never knew what I really had. When I first started getting them it was every spring. The doctor said it was allergies,so I took allergie shots.they did'nt help but,after two months they would go away. When I was in highschool I started getting them because I needed glasses.So I got some. Two months later they went away.A few years had passed without having any until I reached my early 30's. I had talked to people who had migraines but did'nt understand how they could just lie still in a dark room. Every time I got one I could'nt sit still at all.I'd pace the floor holding my head squeezing as hard as I could.Later in life a friend told me I should go see his doctor so I did. That's when I found out I had CH My wife is a nurse and was doing some research for me when she stumbled across this site. I couldnt believe it.I never imagined anyone else feeling this pain. It had been about 5 years since my last CH.I was told I would outgrow them and thought I had. There back ! They started about 6 weeks ago.It seems as time goes on they just keep getting worse.My wife had me try oxygen and it seemed to work at first,but like anything else it doesnt keep working. The night before last I had 4 of them back to back.the oxygen kept them at bay. last night I got one that started around 1am.The oxygen did'nt work.By 4am I could'nt stand it any longer. I ended up standing outside with my robe belt tied around my head in my underwear holding an oxygen tank in-4 degree weather!! Would'nt the cops had a field day with that one ? The only good thing about these CH I've had in the past is they only last about 2 months so I'm coming down the home stretch. Good luck to all of you and your pain Fellow CH, Lonnie
Lonnie Billiter Sr. <>
cincinnati, oh USA
Friday, January 28, 2000 at 10:14:30 (EST)

I am a college student and have been diagnosed with cluster headaches. They have greatly effected my college career and have caused me to drop out of college several times. I am now in the middle of my sixth year of college and am in the middle of a cluster. I do not know if any of you have tried to hold a job, go through these clusters and go to school, but I have been doing it all of my life, well at least since high school and it is no pic nic. I am also a poet or at least attempt to be and love to play the trumpet and both are deeply effected by my headaches. I can not think of anything else to tell. Thank you.
Brian Scott Angerer <>
Lubbock, TX USA
Friday, January 28, 2000 at 05:04:14 (EST)

Had my first when I was about 10! Did not start regular suffering until I was 16. For years I thought it was a sinus problem. I've had other painful ailments like kidney stones but nothing can compare with the CH because the pain is in your head. Thank God that some drugs can make them go away like Prednosone. The only pain killer I've had any luck with is Lorcet, max dose. It actually can take the edge off. I just hope that one day something reliable can be found to stop this nightmare. I feel so bad for the cronic sufferers. Anyone who suffers from CH's knows the worst possible pain in the with a dentist doing a root-canal in your brain!
Matt Johnson <>
Mastic, ny USA
Thursday, January 27, 2000 at 19:23:24 (EST)

After I started with Imigran(which is what we call it in Norway), my CH changed from episodic to chronic. That`s been going on for about 8 years. I`ve tried most medicines. I use Imigran(from 3-10 injections every day), Veraptamil, Lithium and Prednisone(been on 80 mg for a month now). Oxygen does no use. Most of the attacks come during the night, and I`m afraid to sleep. I guess you all know what it feels like waking up with a 9. The lack of sleep has made me a complete looney. I`m not able to do anything any longer. All the things that was so important to me, doesn`t meen a shit anymore. I`ve always said that the day I feel it`s only me and the devil, that day is my last. It`s not worth it anymore. I just came out of the hospital(mental). There they told me to grow stronger and face the devil, to be stronger than him. Jepp. I asked them if they thought they would ever be so strong, that they could go to bed, fall asleep if they knew the devil would come into the bedroom, start sticking knives in their brain. For shure, I`ll never be that strong. My last chance now is surgery. I`ll give it a try. If that doesn`t work, my CH days are over anyway. That is my final decision. It`s gone much too far. My wings are broken.
Tommy Mathiassen <>
Trysil, Norway
Thursday, January 27, 2000 at 07:05:10 (EST)

I am 51 and first had CH at age 22. I will not bore you with what they feel like. We all know what they feel like. At first, I was taking a combination of sansert, indocin, enderol, ergot, and cafergot suppositories. These worked great, the headaches went away and all was well. Now they're back since August 1999 and what was a good combination does nothing now. What seemed to work the best but was the most dangerous, was a combination of lithium, 300mg, 3 times a day, prednisone, and cafergot suppositories. Unfortunately, I was a stroke waiting to happen. Now I take the immitrix, indocin suppositories, verapamil and indocin pills. Like some I have already read, this works short time only and with its dosage limitations leaves me hanging out to dry for many hours. I have been fortunate enough to find a wonderful Headache specialist who actually knows what a CH is. Her name is doctor Russell Walker and she is in Scottsdale Arizona.
armand <>
peoria, az USA
Wednesday, January 26, 2000 at 22:23:02 (EST)

I have only today found this site and am overwhelmed with emotions as I read the stories of others who suffer from this horrible pain. I have always had a high tolerance to pain but when I have an episode I am reduced to a "baby". I am shamed at my "unmanly" behavior when I am suffering from a cluster headache. I feel bad that my wife and two sons are subjected to seeing and hearing what I become during these times. I have been CLOSE to suicide on MANY occasions. I have been suffering from clusters for about 6-7 years now.I had seen many doctors, had sinus surgery and had been given many drugs over the years. About two years ago I was diagnosed with Cluster Headaches. The drugs continued yet still the pain persisted. At this point they have grown to the point that I feel is a chronic problem. I am unable to work and in fact am most of the time unable to get out of bed even when I am not suffering a full-blown cluster because of the constant "dull" headache and the feeling of having a hang-over ( I have not had a drink in about 5 years ). I feel desperate and do not know how much longer I can endure this hell. As much as I would not wish this pain on ANYONE, it is somewhat comforting to know that I am not alone. Some people try to say that they know how I feel because they have migraines. I laugh at them because they have NO IDEA. I'm at the end of my rope and and losing my grip, can't hold on much longer. Knowing that IT is coming soon is almost as bad as the pain itself.My heart goes out to each and every one of you who suffer. I fear not hell, as I live there every day.I pray each night that I will not awake ever again so as not to suffer any more.
Bob Hartje <>
Gasport, NY USA
Wednesday, January 26, 2000 at 18:28:01 (EST)

I too suffer from CHs. I have been having episodic CHs for about thirteen years, but was only diagnosed as such a few years ago. I found the info regarding previous head trauma very interesting as I suffered a head/face injury and loss of consciousness a few years befroe my first episode. I am just starting a new cycle and read with interest the different pain treatments used by all. The only thing I've ever been given are the SLOW acting pain pills (lots of different ones). I'm seeing my dr in a couple of days and you can bet she'll be explaining that one! Thank you so much for being here. I'll be back I'm sure!
Karine <>
Wednesday, January 26, 2000 at 01:07:33 (EST)

Hi Thought I'd stop by as i normally do ever so often, especially when I am clustering..hoping for that one of only cure...have tried almost everything...the last few years been doing the Verapimil and sanset thing...cuts down the headaches to about one big one every 4 or 5 days..twinges the other times...I've found that a cup of tead and 2 excedrin migraine sometimes aborts or shortens the big ones...still kind of wish they would just go away for good...tired of the depression and panic I feel when i get one but feel fine afterwards..u all know how it is...ran into a fellow CH person the other day,the only other CH person i've known..well ex CH...seems he hasn't had one in 4 years..hes 57 now...just maybe huh!! few years to go though...hang in there
michael <>
ny USA
Tuesday, January 25, 2000 at 22:12:17 (EST)

Hello - Began in childhood and went into remission at age 8 until college. Began slowly and have increased in intesity and length every year since. 1 episode a year lasting 4-8 weeks. Want to know if anyone has experienced ch cycle starting after flying? May have noticed a link between flying over 3 hours and cluster cycle. Thanks for the effort put into this site. It is the best one out there. Keep it up! and thanks for the support group.
Dean <>
Covington, Ky USA
Tuesday, January 25, 2000 at 18:16:26 (EST)

What a cracking site. Its 'great' to read letters and messages posted by people who understand the demon.
Graham Bailey <>
Manchester, UK
Tuesday, January 25, 2000 at 17:27:22 (EST)

i need help for the pain
scott chastain <>
olympia, wa USA
Tuesday, January 25, 2000 at 11:05:44 (EST)

I've had clusters for some 42 years. First they were daily, then less frequent. Now, I usually have a year between cycles, and the cycle lasts about 14 weeks. The worst headache I've ever had is the next one. The cycle usually starts slowly (where I am today) and it picks up steam. About the eighth week I'm getting six or seven a day, each lasting 20 minutes to a couple of hours. I do to the hospital a couple of times a cycle, where they give you a shot that puts you down for a couple of hours. They seem to come back even stronger after the shot. I do have a trick for others to try. This has worked for me for years, and is fairly effective even in the worst of times. Violent exercise. I jump on an exercise-cycle and go for it. At full blast after about 6 minutes I used ot get my heart beat over 160 -- the minute that happened (or I broke a sweat) it left. I don't mean it improved -- it left. You actually get a little high. Of course, the next one comes right on schedule. And, you're off again. It's not perfect, but it's good for some relief. And, when you're doing this four or five times a night, you begin to get a little bit of conditioning. No guarantees. But try it.
Elliott Sopkin <>
Palo Alto, CA USA
Monday, January 24, 2000 at 23:27:42 (EST)

LOOOONG-time chronic cluster headache victim (20 yrs). Chronic = 3-5 h/a's per day (and nite). Tried everything INCLUDING duplicating some research where glycerol was injected into my trigeminal nerve (got the head of neurosurgery at my medical facility to give this a try) Argghh. BUT while it didn't get rid of a single headach, it didn't make my face numb either. Small favors. Oxygen. ALL drugs. Visits to internationally known h/a specialist. Oxygen. Head in freezer. Only things that worked were: Sansert (which caused such agonizing joint pain, had to quit). Prednisone (which we all know we can't keep up long.) and Finally, what I take now and have always taken, fully aware of risks and willing to accept them, cafergot (and a couple of days worth of nasal lidocaine here and there. more causes rebound). About 5 or 6 nites a year I get through a nite without a headache. Grateful to the ones that I can hit with half a pill, chill my forehead, and drop back to sleep without really, truly being significantly awake. Not grateful for those that keep me up 4 hours going from item to item stored in my trusty tool bag. Also not grateful for the clusters coming (not often, thank heavens) so close as to be one after the other, nite and day, usually for not more than 3 days. Not too many times a year, either thank goodness. Never, ever, exceed 3 pills in a day. More = tough it out. Gotta Question which I assume can be answered by clicking on "Submit Query"?
soooz <>
Everett, WA USA
Monday, January 24, 2000 at 22:23:36 (EST)

Hi fellow CH's. I started with a few episodes in high school and still experience them 31 years later (I'm 45). The longest break I've had has been five years usually 12 to 18 months. Attacks have lasted from 12 days to 6 months, mostly 4-12 weeks. I generally only experience 1 attack per day which lasts from 1 to 3 hours rarely longer. I'm on a batch at the moment which started on new years eve. I use ergotamine as a preventave along with high doses of slow release magnesium which helps in between attacks. Depending on the severity of the attack I use either ergatamine or imigran injections. I use no pain killers like asprin etc because they never seem to help. I find that walking into a minus 10 degree celcius fridge helps reduce the pain a notch or so and also seems to shorten attacks. Severity ranges from mild 4-6 to wild 8-10. I'm really sorry to see how many there are of us on our little planet but I'm also reassured that I'm not crazy or trying to exaggerate the monster in my head. To all of you in a cycle, stay with us! sanity WILL prevale. Greetings from darkest africa.
James <>
Haenertsburg, Northern Province South Africa
Monday, January 24, 2000 at 08:22:20 (EST)

I have suffered from ch for app. 10 years and they occur about every 6 mo. for 4 to 10 weeks with no relief. I have them on both sides of the head one time on one side and the next time the other side gets it. I have been taking zomig for the pain but doesn't help much. I work shifts and am wondering if this isn't part of my problem but, what to do.
Bryan Kibby <>
Ft. Madison, Ia. USA
Sunday, January 23, 2000 at 23:22:56 (EST)

I stumbled across this page... and noticed alot of people have been suffering with the same cluster headaches I kikicked about 2 years ago. They were once or more daily for years, and someimtes only 3 days a week, and at their worst totally disabling and I ended up in the emergency on many evenings, Imatrex injections, corticosteroid treatment, all sorts of really bad medications, none of which cured the headaches and only caused a mild psychosis. The solution came to me in an over the counter medication which I took ritualistically for 6 months 2 or 3 times daily, and then stopped abruptly -which caused me some delusional experiences, but the medication must be stopped at that time or else it can cause liver damage, and worse vascular effects, but after I stopped the headaches never returned again, and I have never used the cure again in 2 years. The cure is a little bottle called ALLEVE , take for 6 months and then stop. Peace- God Bless All....Its the Answer you been looking for.(check with a doctor to make sure your personal condition is compatible with the offered cure, as yoru medical history could possibly be unique and require close monitoring while on such a drug)
Someone who Cares <>
Miami, FL USA
Sunday, January 23, 2000 at 10:22:45 (EST)

This morning when I wake up I had an other attack so I took an injection. This time just half of the ammount and it works with me just the same. Now I dont't have to quarrel with my docter and chemist that I take to much of it. And it sure is better for my body. Maybe it helps you all to know this.
Pieter <>
Beverwijk, nh holland
Sunday, January 23, 2000 at 09:53:50 (EST)

Hello! Let me open with the fact that I have suffered with sever cronic clusters for over 30 years now and have never met another soul with anything like what I have! When I stumbled on to your site it was like I was reading something my own wife or child might have written about me so I can't tell you what this has done to me at this moment in my life. I'll be posting my story soon and in the mean time I'll just inform you that I suffer from 7-12 episodes per day and average 7. I have there attacks on a daily basis fo 31 years,and have been through almost every known treatment with little to no sucess. I went "Drug Free" and Doctor free 10 years ago and I mean "Drug Free" I dont even take asprin. I'll go into detail in my next post. I'm looking forward to sharing with you as well as sponging any information that might be out there in the ranks of you members! Sailpappy
John Joseph Hallahan III <>
Naples, Fl USA
Sunday, January 23, 2000 at 08:48:00 (EST)

Finding this site was great. I was diagnosed in 1986 with CH,after seeing many different doctors for about 8 years and being diagnosed with a little bit of everything. Would start treatment and after a month or so, they would disappear, making me think I had found it! It was on Thankgiving Day, 1986, the day after I was diagnosed with swelling of the brain, my wife finally dragged me to the ER. This young doctor, about 26 or so, walked in and after about 5 minute discussion, he told me I had CH. I did not believe him, but started researching it. Wow, so many things I found were too close to home for this not to be it. Started seeing a Neurologist and he put me on Inderal and Lithium. I had such severe withdrawals from the Lithium, I swore I would never try it again. After several different doctors, I finally found a Neurologist I was comfortable with. He was easy to talk to and seemed to know about CH. He started me on Verapamil (Calan SR 240) and this would start to get most of my clusters under control. After a couple of days on it, the headaches were less severe and shorter in duration. One of the pain medications he put me on was Fiorinal (Butalbital). They are very soft and will disolve on your tongue before you can swallow them. It tastes like sucking a regular asprin (yuk), but usually, within 10 minutes, the pain was subsiding. Oxygen was another thing we tried that worked very well. It was quicker to stop the pain, but they would tend to come back withing two hours. I was taking O2 and once the pain was gone, I would take a butalbital tablet to keep it away. When my clusters were real bad, and Calan was not able to detain them, I would take Sansert (2mg) three times a day. These would make me sick to my stomache for two days, but they seemed to work. They also made me irritable (as if the headaches didn't). The other side effect of these was weight gain. My wife has always been there for me during these, but always felt helpless about it. My oldest daughter told me one time when she was about 3 or 4 "Daddy, please don't have a headache today". At this point, I realized what it did to the entire family. From that point on, I would just slip away to the bedroom and suffer alone. I have been lucky lately. My last bad bout was in 1991, but about once a year, they show up, just to remind me of how bad they can be, but only stay for 2 or 3 weeks before disappearing again and only reach a 6 on the KIP. I had an old friend ask me if getting off of shift work helped my headaches and I told him they seemed to be better than they used to be, but shift work had nothing to do with it. Upon further discussion, I realized I quit working shift work in 1991!.. In all of the notes I read, very few have tried butalbital, but it and cafergot were the only things that seemed to help me ease the pain. It is available with asprin or acetominophine and with or with out codine. I had it with asprin and without codine. It has a warning on it about driving or operating machinery, but I can take one and feel no different??? I guess they effect everyone differently. Good luck to everyone that tries these. If one person gets relief from my suggestions, this long letter will be worth it... E-Mail me individually if you want to ask me questions or just need to talk to someone that understands what you are going through...
Mark Bradley <>
Crosby, tx USA
Saturday, January 22, 2000 at 16:02:56 (EST)

Hallo! I`m 31 years old, and live in Norway. I have suffered from CH since I was about 17. In the beginning it was episodic, 3 months almost every eastern and spring. The last 5 years it has become cronic, but it`s worst in the periods I mentioned. I find it harder and harder to deal with,especially because of the lack of sleep, I haven`t been able to work, my girlfriend couldn`t handle it anymore and left me, I just sit here waiting for the next attack to come. Life is great...for someone I guess. But I hate feeling sorry of myself, and I hate when others do too. They don`t fucking understand afterall, it`s impossible. So when I found this site yesterday, it felt really good. People who know! Tommy
Tommy Mathiassen <>
Trysil, Norway
Saturday, January 22, 2000 at 15:05:44 (EST)

i am now suffering cluster headache for 23 jr's. at first in fall and spring but the last 6 jr's only in the fall for a period of + - 2 mnd's. the drug verapamil, oxygen and sumatriptan helps me for + - 50% now i only take 3 injections in 24 hour. my battery runs empty now because i am afraid to go to sleep again after a attack there will come another and another. i am angry and sad, i want this to stop. i want to cook, eet, drink and make fun with my wife and children. if i am lucky i only have 2 weeks to go. i will beat this lion.
pieter <>
beverwijk, nh holland
Saturday, January 22, 2000 at 06:22:53 (EST)

This is a 'nice' site to discover on a saturdaymorning! I am a sufferer for 15 years (3 months every 2,5 years) and waiting for another period to happen. When I went to my new physician the other day to get oxygen he said: that's strange, a woman with CH. Thanks! I will give him the URL.
Annette <>
Rijswijk, zh netherlands
Saturday, January 22, 2000 at 06:09:30 (EST)

Thanks for the site. I have suffered for 11yrs, but was only "diagnosed" 3 yrs ago. Find it hard to explain to non sufferers just what it feels like to think your head is going to pop. Ever read or seen "Scanners"!!
Rob <>
Friday, January 21, 2000 at 15:19:34 (EST)

Great site,Can't belive how many of us there are.I have never known another person that has these.This site makes me feel like I am not crazy.
charles moulton <>
Norwood, Ma USA
Friday, January 21, 2000 at 12:28:44 (EST)

I have never disliked anything so much as I do these types of Headaches. I have had them for about 25 years now. When its that time of year, a sunrise can trigger them. I work third shift, but have had Clusters before I came to third. Some years they will skip me and I will go for eighteen months before they start in again. I go see the Doctor tomorrow. I think he's going to try a nasal spray or something.
Mr. Terry Silvernail <>
Endicott, ny USA
Friday, January 21, 2000 at 03:17:12 (EST)

Hi I'm a first time writer and know very little about Cluster Headaches. My headaches started about two years ago, they only last for about 1-2 minutes but they are the most intense pain I've very felt. There always on the right side of my head behind my eye and only get one or two headaches at a time. My doctor said he there Cluster headaches and I have a Cat Scan scheduled for tomorrow. I'm kinda worried cause I don't know much about this other then these headaches seem to be coming alot more frequently, usually 1 to 2 times a week, up from 1 time a month 4 to 5 months ago. Does this sound like Cluster Headaches or something else. Any comments would be greatly appreciated. Thank You.
Dan Frey <>
Phoenix, Az USA
Friday, January 21, 2000 at 02:56:41 (EST)

I am very glad to find the site, but the fact that there are so many sufferers, and NO cure, depresses me. I have been a CH for 6 years, but only recemtly diagnosed. Many trips to the ER, unbelievable, unbearable pain, missed outings, strained relationships and a general feeling that something just isn't "right". I am on Verapamil, have had Imitrex and Amerge, pain killers- but nothing seems to help, but time. I can't tell if the oxygen helps. It certainly doesn't make it go away. How can we find a solution? I cannot stand the idea that this is a lifelong condition for me.
Thursday, January 20, 2000 at 23:57:46 (EST)

Been suffering for 15 years, finally diagnosed 3 yrs. ago. tried imitrex,, naprosyn, ercaf,nothing,rounds of prednisone,nothing, daily calcium channel blockers,and im still in cycle that has been raging for 3+ weeks.cant work,cant drive. Attacks wake me from sleep usually, 2 hours into sleep, rage on 3-4 hours. wild, mind-numbing pain while my whole body feels like its overheating, right eye swollen, back of neck knotted and tender, nasal congestion, light sensitivity, see flashing lights, panic and fear ride with the pain. there has got to be an answer somewhere,i have never hear of a group of people suffer so much from something others perceive as stress, our lifestyle, state of mind, etc.It is so maddening,anyone who wants to, please corresond and share tips,coping skills etc. you all are the lifeline i hang on
karen <>
ct USA
Thursday, January 20, 2000 at 18:47:36 (EST)

I'm a new cluster headache sufferer, looking for effective therapies.
Carlos Guzman <>
San Juan, PR USA
Thursday, January 20, 2000 at 10:08:12 (EST)

I've basically already signed the guest book but am doing so again, just to say, this is the best site I've found! I could sit here all night and respond to people and my heart goes out to all who suffer. I see the pain but don't feel it and to the spouses and people who are with those that suffer, I understand. All we can do is work together and I WILL continue to support this site and CONTINUE to find a way to get a cure, or relief for those who suffer. Write me anytime.
Suzanne <>
Fresno, CA USA
Thursday, January 20, 2000 at 02:59:40 (EST)

I have been reading this site, as my husband has suffered for now going on 3 years and everything is so true and I can't believe the pain he goes thru! He started his most recent cycle 3 weeks ago, I've logged them kept track of them, he's been on so many medications it's unreal and this time said he's going to work no matter what. He was on disability 6 months out of 1999 and all I do is sit here and pray and I've prayed more than I've ever prayed in my life, I mean prayed! He came home tonight and was fine no headaches for two days, however he's exhausted, then at 10:42 p.m. bingo out of the blue, was fine and this one, for the first time in 3 weeks only lasted 20 min. It wasn't as bad, but who knows, he could be up all night! We don't even sleep in the same room. It is devastating and we have a great doctor and he has medications after medications and oxygen and why, why are these so awful? I've tried to explain to people, and finally 3 of our friends have seen and heard him in action and can't belive it! I stay up with him, Can't do a darn thing, but sit here and pray. When or why can't someone find a cure for this? It doesn't even compare with a Migraine, child birth, cancer nothing. Most of what I mentioned have at least a pain killer to take away the pain. But when your on so many medications and pain killers and they don't help, what does one do? Yes if he takes around 5 to 6 Vicoden or Percocet then maybe, but he's been to ER so many times with shots of Demerol and come home and here we go again an hour later. I've written TV shows to see if a show could be done on these Devil headaches, as there must be someone, some doctor, somewhere that may have an answer. It's like the world doesn't have a clue about these horrible headaches. I, the wife of a sufferer, has never had a headache so I just see him suffer as I know so many of you do! Yes they are the "Suicide Headache" and the "Devil Headache" and worse than anything. Like I said, cancer patients have medication that take away the pain, women having babies - well they give them something, Migraine sufferers get relief and many more, but to this day, nothing for some reason has been discovered on these headaches and why, what causes them? Also, I'm sure you all have had the MRI, CT scan etc. I just want to know so much as to why they happen, what's going on in the same part of the head, almost at the same time everyday, almost the same time of year, almost the same period of time that they last, like WHAT and WHY! Let's all try more to get on a show or whatever, I will be here, this is the best site I've yet to visit. Thank's for letting me vent, and will keep in touch - a concerned wife and a concerned person who is concerned about all who suffer from these!
Suzanne <>
Fresno, CA USA
Thursday, January 20, 2000 at 02:13:05 (EST)

my last cycle started nov 1st is now at the end.i am so thankful that i found this site....i have had these devil headaches since 1989...and i know what you all are going through...but just remember it helps to know that they can come to an least for me about 2 years in between...thank you so much for this site !!! it helps to know there are others....
Tildi <>
Osceola, In USA
Wednesday, January 19, 2000 at 21:31:56 (EST)

Great site! Very informative ... still 'going through it'.
Adam <>
Adelaide, SA Australia
Wednesday, January 19, 2000 at 18:40:06 (EST)

HI, been looking the site over for a few days, my sister found it after the nerologist said he thought I' was having CH. At 19 I began having CH or Migraines, no one knows for sure anymore, I'm 38 now, in the early 80's I was diagnoised with Vascular Migraines, taking me outta life for a good 3 days, with no med's that seemed to help - though the ones' that almost killed me may have been a hidden blessing. After marriage came children and I had to learn to control the pain with Tylenol! so I abused it for years - taking 4 at at time till some relief hit. 1999 was spent 3 outt 4 weeks down with pain, or eye so bad I could'nt read, work or drive 3 outta 4 weeks - good thing I work for myself! But Christmas Eve, after battleing back an onset for 2 weeks - it broke in less than 5 minutes and never let up - Christmas Day they took me to ER where I was told the Morphin would stop the pain and when I woke up it would be gone - I knew that was good to be true! Didn't last 6 hrs! Dec 27 saw Dr. and he gave heavy pain Rx (I don't know - I was outta it) only it made the pain worse and really blew me away, saw nerologist next day, and he took me off that and presprcrived Depokata(?) which made the pain much worse and cyled 3 times per pill! After a full 19 days of hell, he started me on Prednisone which immediately began to mask the pain, though its still there lying in wait I can feel it. My eye finally opened, and the swelling went down, sandpaper reduced a few grades, and blood vessels began to heal - then I began the cut down after 3 days - swelling came right back - low grade pain just waiting after 8 hours to be there, eye is blurry and the "shadowing" effect is constant. I'm so exhausted I cannot work - and with eyes going already - I'm terrified I'll loose what business I do have. I'm downto one pill a day today - and it's not looking good - and Dr. won't see me again till next Tue. The Fear, I hate being this afraid, knowing you all have suffered this, and have made it this far, has been incredible to me, I wish I could say my pain cyled in hours, but it seems to keep to the days mode with no let down, my kids are scared - but now I have name to call the Demon and hopefully together we will have find light at the end of this tunnel! Thank you all!
Carol <>
Council Bluffs, IA USA
Wednesday, January 19, 2000 at 14:08:11 (EST)

I first experienced CH in 1997 at 54 years old. After treatment with verapamil and Imitrex by a neurologist, they disappeared for two years. They're back with a vengence. Same time of the year almost to the date. I find that the Imitrex tablet is too slow for my liking especially with a bout that lasts over two hours. I have an appointment with that neurologist for tomorrow.
Chet <>
Mandeville, La USA
Wednesday, January 19, 2000 at 10:09:14 (EST)

Well im 16. I have had these Cluster Headaches for about a year now, I was 15. Late this Sept. they got way worse, where I can't do anything. I got Imitrex it worked great, except for the side effects. I would basically be high, with chest and throat tightness, so my neurologist told me not to take it anymore because it may cause a heart attack. So that totally sucks, I have tried so many medicines now nothing works. I just have to bear with the pain, and to make it worse my Cluster Headaches last all day. From when I wake up to later during the day sometimes night, nonstop. I hate it. Now that I can't take the Imitrex I've been missing a lot of school and now I don't know how I'm even going to finish school. This week is finals week, and I missed today. Hopefully tomorrow will be a better day. I dread waking up, just knowing what I will endure for the day. This site has helped me to understand my condition better. I really don't think this is a condition rather a disease it is so terrible. I just don't know what to do.
Robert Valles <>
La Puente, CA USA
Wednesday, January 19, 2000 at 02:12:22 (EST)

I'm a 52yo man (4/22/47) and have been having Cluster Headaches since age 14. Last week, they're back after a 10 year reprieve. Thought they were finally over. They've built to 3 per day, the pain never completely going away. Trying intense physical activity, which works somewhat. At least it's better than being drugged into oblivion, feeling the pain but too drugged to care. Just wish they'd go away!
Robert (Bob) Barnes <>
Newport Beach, CA USA
Tuesday, January 18, 2000 at 14:43:17 (EST)

Thank you for the web site!!!! It's great know there are others out there. Been having them since I was a teenager and am now 35. Started another episode and have found this site comforting to say the least. E-mail me for a shoulder to lean on...thanks for listening Bill
Bill Denzien <>
Phoenix, AZ USA
Tuesday, January 18, 2000 at 13:50:47 (EST)

I've been a "cluster-head" for several years without knowing what to call it! Good to know I'm not alone.
Steve Curzon <>
Warrington, Cheshire UK
Tuesday, January 18, 2000 at 12:16:47 (EST)

I can't believe I've found this page! I've suffered from cluster headaches for 25 years (I'm 46). I haven't had one for a year now. It starts on the right side of my temple and at it's worse my eys just streams and streams, whilst I am screaming inside. My doctor does not understand anything about them. He will the next time I go. I rub loads and loads of Olbas oil on the right side of my head and down my neckl. I don't think anyone I know understands the pain. This site is so comforting, and I thank whoever set it up
Marion <>
Oxford, UK
Tuesday, January 18, 2000 at 12:12:16 (EST)

Hi and thank you i have just discovered your site and i am happy. I have been suffering with chronic clusters for 3 years and did not know what the hell has been happening to me to see i am not alone is fantastic although i do feel for everyone out there. my most resent attack was today and came on like a sledge hammer to the side of my head i was driving with my pregnant wife at the time in heavy traffic. Scarey time is an understatment. Oxygen is the only thing that seems to work for me i have even been on morphine and it did not even lessen the pain. Thanks to the wonder of the internet i am now able to get information that my doctors could not supply. with the references to the beast i have read here i now have a new name for it and the "BEAST" certainly fits the bill. my best wishes to all and hopes of pain free times to all
Pat Dunne <>
Mandurah, WA Australia
Tuesday, January 18, 2000 at 09:41:55 (EST)

I think the best way to raise understanding & awareness of our condition is to spread the word & educate the unknowing of our plight. There are soooo many people that have never heard of CH & of the people I have talked to, they are very interested (as many know someone that has our symptoms) but don't know what to do about it. Once I let them know there is a name for this demon & help, they want to know all I can offer.This makes me feel better as I hope ANY of the info I can give may save someone some of the torture I have suffered. Hang in there fellow CH sufferers! : }
Tucson X 2
Tuesday, January 18, 2000 at 04:30:44 (EST)

After 29 years of "regular" migraines, they suddenly changed in 1986 to Clusters...24 more years. I haven't had a normal migraine since-but oh, these Clusters! I have tried more than twenty different meds, some helped for a while and then didn't. It is interesting...We estimate that since 1986 I have had right around 50,000 short, killer cluster headaches! And nearly each one of them have been of the suicidal type. I know for certain that if I hadn't been so debilitated at the time, I would definately have killed myself during most of those attacks. And I am relly used to pain. I know what you are going through. But, nobody who hasn't gone through it can possibly know. I often run to the hot shower and boil myself.
Kenn <>
Portland, Or USA
Tuesday, January 18, 2000 at 02:09:26 (EST)

I was realy happy to find this site. My husband suffers from chronic CH and I have already found many useful resources on this site. Things no one ever told us. Thank you.
Tuesday, January 18, 2000 at 00:46:12 (EST)

I just got back into the cycle after being CH free for 15+ years. A great way to usher in the new year! Fortunately there are a number of new treatments and I'm in the middle of finding one or two that work. Took propranalol for all these years and I think it worked, until now.
Denny Weston <>
Bellevue, WA USA
Monday, January 17, 2000 at 23:15:03 (EST)

My name is Mark I've had ch since i was nineteen all though i just went 8yrs with out a attack. I have now had a headache for 16 day straight. Initex seem to help but, cannot afford it, also sitting in a fetus position under a cold shower help big trick for myself is to relax and let go of all throughts you may have good luck.
Mark <>
kihei, hi USA
Monday, January 17, 2000 at 22:48:36 (EST)

I started suffering from CH a few years ago, didn't even know what it was. My brother had been having them for years (diagnosed migraine sufferer) but I never made any connection. Doctor told me it was tension headaches (yeah, right, thanks doc). Finally found a friend who suffered from severe migraine and knew what cluster headaches were. She referred me to her doctor, who diagnosed it and started treating me. I haven't found total relief yet, but we are working at it. I am just at the end of my "winter cycle" of headaches and looking forward to a few headache-free months before the late spring/early summer cycle kicks in. Nice to find this place.
Chris <>
Virginia Beach, VA USA
Monday, January 17, 2000 at 10:00:44 (EST)

Hi, I am still amazed this many years later (mine started in 1971) there is so little know about Cluster Headaches and even less in the treatment. I went the full route from going to the emergency room and telling them the only reason I had not shot myself was because I was afraid I would hear the shot before relief. Two hypo's later I was sitting above my head looking down at the pain. The next day I felt horrible! Done all the Doctoring and various scans all to say use steroids to break the cycle, good luck. I had been realitively free since 1994 and now back and very serious about it. Some times they come in waves, easing just as the new one rolls in and bashes me, not to death, just pain and FEAR of more pain. The devil story is pretty close to the story. Fear of sleeping and fear of the pain and not knowing when or how bad! Thanks! Gary
Gary Sedahl <>
Lehigh Acres, Fl USA
Monday, January 17, 2000 at 08:59:55 (EST)

I'm 55 years old. Headaches began at about 45. I'm "lucky",attacks come only about once a year. Last about a month to 6 weeks. Never been properly treated. Told I had sinus infections, etc. Thankful to find this site. No one seems to understand the pain.
Tony Pistone <>
Tarrytown, NY USA
Monday, January 17, 2000 at 03:08:18 (EST)

I've suffered with CH for the past 11 years. Last year my neurologist prescribed verapimil (calan) and it definately helps. I've only taken it for one cycle so far, but it stopped the cycle. I am optimistic about future relief. This website is great. It's nice to know I'm not alone in this, Good Luck to ALL
Jim Meynard <>
Lafayette, LA USA
Monday, January 17, 2000 at 03:00:20 (EST)

I also was diagnosed with cluster headaches 28th dec-99. began on nov. 15-99. I am also on prednisone and have had a repreve from hell. Time nearing to get off meds and I am afraid that the demon will return. I have not been to lie flat to sleep in weeks. I sleep in a recliner in a semi-upright position. I am bloated, moody, and just do not feel very well. I hope ther is another way to keep the demon away.
Candi <>
Hernando, Ms. USA
Monday, January 17, 2000 at 00:42:20 (EST)

When the BEAST comes, we must remember that it also goes away.
Roberto <>
Capital Federal, Argentina
Sunday, January 16, 2000 at 23:18:36 (EST)

Just turned 60 and began to know I am.Started to get CH about 2 months ago,And last week went to do something about it. Last month I didn't know CH exisited.I found this web site and found out its real. I just started predizone Saturday.It looks a little scary, Ithink I caught it early sso all we can do is hope .After reading about all the mail on this site I have a very minor case I wish every one who reads this well and good luck BobA
BobA <>
Redgranite, WI USA
Sunday, January 16, 2000 at 19:50:20 (EST)

I've suffered from episodic cluster headaches for over 20 years now. I just found this site today - it's comforting to know that I'm not alone.
Sunday, January 16, 2000 at 19:22:57 (EST)

I've been a cluster headache sufferer for about 8 years now and just recently have been able to put a name on what I have. It's great to have found this website!
Chris Hartness <>
Ridgeway, VA USA
Sunday, January 16, 2000 at 15:00:13 (EST)

My headaches are back. After being in remission for 2 years.My doctor started me on prednisone 20mg.I am working out four times A week to lose some weight.Will working out stop the weight gain that goes with taking prednisne.
Michael Johnson <lcamino427@hotmail>
Hammond, Id USA
Sunday, January 16, 2000 at 12:28:56 (EST)

My headaches are back. After being in remission for 2 years.My doctor started me on prednisone 20mg.I am working out four times A week to lose some weight.Will working out stop the weight gain that goes with taking prednisne.
Michael Johnson <lcamino427>
Hammond, Id USA
Sunday, January 16, 2000 at 12:26:30 (EST)

I am a 61-year-old female who has suffered with cluster headaches since I was 25. It wasn't until I was 40 that I was correctly diagnosed as having cluster headaches - prior to that, I was told 'it's all in your head' or 'tension headaches' or 'nerves'. For years, I had two or three clusters a year, each one lasting from 3 to 4 months, with one headache a day during the early part of the cluster and two a day during the middle, then back to one a day. Each headache would last for 6 to 8 hours. For years, I was afraid to go to sleep at night, because they always started when I was asleep. You could almost set a clock by them. As you all know, the pain was virtually unbearable. The doctor who diagnosed my headaches as being cluster headaches started me taking 50mg of Atenolol (a drug used to lower blood pressure) each night to prevent a cluster from starting. This has worked quite well, as I now have a cluster only about every 2 to 3 years. When I do have a cluster begin, if I immediately start on a regimen of taking Aristocort (which most doctors want to replace with Prednisone), the cluster is aborted. The reason most doctors want to replace the Aristocort with Prednisone is that the Aristocort regimen requires taking the drug in decreasing doses over a period of ten weeks, while the Prednisone requires a much shorter time. The problem is - for me, the Prednisone does not work, while the Aristocort does. I have not had a cluster for nearly four years this time, however I am having one now. I was recently hospitalized with this horrible flu that turns into pneumonia and they put me on Prednisone to clear up the lung infection, etc. As I am coming off the Prednisone a cluster has begun, but it differs from previous clusters in that each headache only lasts for about an hour or so, and there may be several in one day, each with a pain level of about 7, rather than the 10 from previous clusters. I am not going to start taking Aristocort until I ascertain whether or not the headaches will go away by themselves once I am completely off the Prednisone. I do want to say that I am very thankful for having found this site - for so many years, I didn't know what these headaches were, I had no way of stopping them, and knew of no one else who had them. I did not live - I existed, I survived. I lived in dread of these 'beasts' - and I have always viewed them as an enemy to be vanquished. If any information I can share will help just one other person, I win another battle. I would be more than happy to answer any questions you might want to e-mail me.
Marie <>
Santa Fe, NM USA
Sunday, January 16, 2000 at 11:25:45 (EST)

hi. i am 25 yr old female that suffers constatly(or what seems constat)with these horrible headaches.I was just looking to talk to someone else about coping with the pain.I try to lead an everday normal life and keep a full time job with the ever-present worry that i am absent too much because of the headaches.I am thankful there are others like myself because you do feel isolated sometimes.thanks for letting me chat.Kellie
kellie <>
fairmount, ga USA
Sunday, January 16, 2000 at 10:09:18 (EST)

Well, I can't say that I'm happy to see there are many more suffers of this "Devil Headache", but I do find slight comfort in knowing that I'm not alone. No one else even comes close to understanding the pain & intensity involved. Good Luck All & To All "Good"night!
Randall Holman <>
Tacoma, WA USA
Saturday, January 15, 2000 at 18:54:00 (EST)

Well I am both comforted and very sad to find this site. Ihave been suffering with CH's for about 10 years now. I guess that I am more fortunate than most of you, in that I only get visited every two years or so. When I do get them it is normally from 4-8 weeks at a time. It took me several years to find someone who could actually diagnose me. Once diagnosed, it took another 3 or 4 bouts to figure out what would work for me. My longest bout was about 8 weeks in duration and I went through every drug known to man. At the end of my hell I found a new doctor who had dealt with these before and he put me on LITHIUM and SANSERT. Instant stop! I use imitrex injectable at the onset to control the headaches, and also when I am wheaning myself off my drugs. I never know when it is safe to stop taking the lithium ,sansert combination. The beast usually rears it's ugly head in the spring for me. It has been a year, and I con only pray that it decides to stay away another year, with March quickly approaching.Keep your heads up, my prayers are with you.
Paul Buckrell < OR>
Toronto, ON Canada
Saturday, January 15, 2000 at 16:16:29 (EST)

I suffer from migraines approximately 10 days before my monthly cycle...the migraine lasts 2-3 days. I am now trying Amerge. We'll see...any suggestions?
Kelly Totten <>
Fair Oaks, CA USA
Saturday, January 15, 2000 at 10:41:06 (EST)

HELLO ! I'm Peter from England. I have just found this site so thank you. I suppose I am " Lucky" really as I only get my bouts every 2 years !! They last 8 weeks and Jesus what an 8 weeks that is, but you don't need me to explain do you ? I'm okay at the moment so send me a message I would love to here from you. Best Wishes from England....... Peter.
Peter Demaine <>
Blackburn, Lancashire ENGLAND
Saturday, January 15, 2000 at 06:29:53 (EST)

Hello, friends. Someone referred me to this site, and I am glad to find my fellow CH sufferers. I hope that I can benefit by your experience and you can benefit by my experience.
Patrick McGrath <>
Stony Point, NY USA
Friday, January 14, 2000 at 22:11:41 (EST)

I have been browsing this website and this looks great. I am a 61 year old Grandmother that has suffered with these crazy things since 1974. For years they thought I had trigeminal neuralgia but said they were atypical!!! 1994 I foulnd a neuro. that diagnosed cluster headaches. I am taking verapamil 120 mg.and 1 wigraine daily. I also breathe oxygen at onset of pain. I am on a very strict diet. No chocolate, chinese food, caffein, wine, nutrasweet and etc.etc.. If I watch my diet closely my head does not bother me. So nice to know someone else has this. I have stayed up all night before just to try to fool the demon in my head. Also nice to see there are other females that have clusters. My doctor told me I was rather unique. Not many females have clusters.
Virginia Mitchell <>
Ashdown, AR USA
Friday, January 14, 2000 at 19:36:57 (EST)

Since right before Christmas I have had a re-occurence of my cluster headaches. My last battle was about years ago. However, this time the pain has been so intense that I have had to visit the ER each and every time. Unlike my previous visits for medical attention the doctor I'm being treated by now has taken a more aggressive approach. That's fine, the headache pain is being controlled, but the regiment of drugs being prescribed to me is effectiving all else around me. Somedays I'm light as kite with a lot of energy but other days (like yesterday) I feel bloated and worn down. I'm really hoping that this episode ends soon, so I can press on with the rest of my life. I just really dread the upcoming battles I face.
Richard L. <>
Friday, January 14, 2000 at 05:06:39 (EST)

Hello, I feel for you people who have them day in and day out. I've only had a few dozen in the past 9 years. I used to get them during the night and day. Many times I thought about putting a large C-clamp on my head. I am currently in a period in which I'm getting one a day. The severity is decreasing, it peaked on New Years Day, at my Brother-in-laws house unfortunately. 12 or so years ago when I first started getting them the worst were at night. Now the worst are generally in the daytime. There are no absolutes such that they only occur at night. Now, in this hopefully short bout of them I drive around in my work truck pounding my fist against my forehead. I often wonder what other people think.
Ernest Menard <>
Thursday, January 13, 2000 at 22:45:22 (EST)

I just wanted to introduce myself to my fellow CH sufferers. I am in my mid 40s and was just diagnosed with chronic CH in July '99. Before that I had been suffering for 3+ years of daily dances with the beast. The misdiagnoses included sinus problems and subsequent surgery. While I did have polyps the surgery did not “cure” the problem. Actually the prednisone gave me a two-month reprieve. Once the devil returned I was diagnosed with TMJ and a few other maladies. Finally after two months of 4 X a day of Kip level 9-10 dances I was so depressed I spoke with a psychiatrist. He highly recommended that I see a neurologist. The young doctor that I spoke to immediately recognized the CH symptoms. After my MRI, I was started on a prednisone and verapamil as a prophylactic treatment, and Imitrex nasal, Maxalt sub-lingual, and of course good ole Oxygen when I need to take the beast for a walk. So I can now say that I normally only have 1-2 pains per week and they are usually only 3-5 on the Kip scale. Although I had a short cluster over the Holidays I feel that I can see some light at the end of the tunnel. And there is better living through chemistry!!
John Strait <>
Columbia, MD USA
Thursday, January 13, 2000 at 21:34:02 (EST)

When my brother told me he found a place and read some of the letters discribing everything that I go through,I cried,not because I was sad,quite the opposite. Thanks,Cant wait to talk with someone who also suffers. Chuck C Temple Tx
Thursday, January 13, 2000 at 21:29:29 (EST)

Just glad to know that there are others dealing with this!!! I've had evil headaches first dianosed as migraines since I was five, and at least my family understands what I'm going through as I'm part of the fourth generation of headache sufferers on my Dad's side. I'm so grateful that I have resources such as this site to help me cope better than my Father has been able to!!!
Annette Huizinga <>
Welland, ON Canada
Thursday, January 13, 2000 at 20:58:43 (EST)

I'm a fourth generation headache sufferer, but it's not like anyone before me was diagnosed correctly with clusters. My first migraine occured when I was five, and it wasn't until two years ago that my doctor finally concluded that I suffer
Annette Huizinga <>
Welland, ON Canada
Thursday, January 13, 2000 at 20:50:44 (EST)

Hi CH sufferers have not had them in 5 years and the beast has returned. Just got a new bottle of oxygen and it kinda helps but along with Vicodin and a bunch of hours of sleepless nights I suffer along. Thanks for your website
Pat Donlon <>
chicago, il USA
Thursday, January 13, 2000 at 20:40:12 (EST)

My husband has been suffering from cluster headaches for nearly twenty years. His last period of remissions was for two years, but in October he started in another cycle. During the last two weeks he has been using acupuncture. Actually, his headaches are more frequent now, and also more severe. Before acupuncture his headaches occured every other day, but now they are every night, and usually two or three. Has anyone else out there used acupuncture and what were the results? Could acupuncture trigger more headaches? Oxygen helps him as long as he catches the headache right away. He also is taking some type of antihistime, and since he is still clustering after three months, I don't know if that is helping him. Usually, his cycle does not last more than three to four months. Any ideas would be appreciated, especially opinions on acupuncture. Thanks
Laura <>
Fountain Valley, ca USA
Thursday, January 13, 2000 at 10:33:50 (EST)

I have had CH'S for about 6 years. I take ERGOMAR prescribed by my doctor. Plus a few advil's which I sometimes think do help if taken quickly as the pain starts to begin. I thank you all on this site. I just found it today Wed 1-12-2000 and think it to be a really great website that we all need. Thank you all ( Windy ) like a breeze o. k.?
Wendell ( Windy) Hawley <>
MountLake Terrace, wa USA
Wednesday, January 12, 2000 at 19:37:51 (EST)

I have been getting terrible headaches since I was 12 years old and I never was able to explain them to the doctor. I was given CAT scans and put on numerous migrane perscriptions. Nothing seemed to work! I was then told that I suffered from cluster headaches; However, there was much that could be done. I am so excited to know that there is a site for people like me and that I am not alone. I know very little about the headaches and what causes them. If anyone has any info. on them or info. on how family members can better understand please let me know.
Nicole Adinolfe <>
Newfane, NY USA
Wednesday, January 12, 2000 at 14:34:54 (EST)

It all started when I was about 12, and I am now 37. My CHs come about once a month lasting for one to two weeks. Most eventually reach level 7, peak in 1 minute, last 30 minutes, and recur every 2 to 4 hours. Mine start with a stiff neck, stuffy right nostril, and droopy right eye. The pain is seconds or minutes away, the entire right side of my head, with extreme pressure behind the right eye. I used to tell the lapsing of 10 minutes within a second from start of a headache to the Tylenol kicking in. When I was in my teens I used to get the Mustard jar out of the refrigerator and put it on my right eye Doctors told me the pain was all in my head, and they were uselessly right. One gave me some eye cream, for styes. No Rx meds of any kind for over 15 years. They peaked about 1990, when I was 27, also I had decided to quit abusing Tylenol (I ate 2 capsules every 2 hours for the 2 week duration, not good). The pain would not go away. For 2 weeks I laid in bed, day and night. I wasn't even fighting anymore, too much pain. I missed work and when I was there I was useless 30 minutes out of every 2 hours. A doctor finally gave me a CAT scan, and sent me to a nerve specialist. CH was diagnosed. Propranolol leveled out the cluster so I got back to life with "normal" CHs. Now I can occasionally convince the doc to give me some pain meds while we experiment with the "cures". I use a rolled up towel to get pressure on the back of my neck and to help "align my spine" while lying down. Honestly my pain for the last 2 or 3 years has problably reached level 7 only once or twice, mostly I do 4s and 5s. I can live this way, it is much better than those dark months back in 1990. I just wish I didn't feel like a junkie, begging the doc for more meds every month.
Russell Cole <>
Norman, OK USA
Wednesday, January 12, 2000 at 14:23:46 (EST)

I have been getting cluster headaches for 19 years - episodes of 8 - 10 weeks every 2 to 4 years. i'm in the 5th week of them right now. I take Imitrex tablets and I'm always looking for information on ways to relieve the pain.
Karen Wicks <>
Corpus Christi, TX USA
Wednesday, January 12, 2000 at 12:38:22 (EST)

Hello C.H. People. That day is here! I just wanted to get back on here to tell everybody that its been 3 weeks no more med bag,no more wash rags or goody powders. So far I have ate chinese food, beer, penut butter, wall nuts, A borito. Thank God!!!!!!!! I wanted to write this to all my brothes & sisters out there to let you know that it will end soon and you wont hardly remember. I pray for everyone of you all the time. Thanks to these wonderful people that bring us this place to come togeather. They will find help for us with the help of the Lord. K.B.C.
Bill Chambers <>
Atlanta,Ga., Ga. USA
Tuesday, January 11, 2000 at 23:13:46 (EST)

I have had CH's for about 20 years now. I had cycles of 2-3 months followed by remissions of 5-6 months for about ten years. For about the last ten years this has changed to cycles of 4-6 months with remissions of up to two years. The first eight or so years I had CH's I had no idea what was wrong. I saw a doctor when they first started and he said I was imagining them(a**hole!). So I suffered for many years with no medication. During that time I learned not to fear pain, but to deal with it. I'me sure lots of fellow CH's sufferer's know what I mean. I now use lithium which works very well except in the middle of a cycle. I also find that very cold air will abort a headache quite quickly. The colder the better. This is fortunate for me as I live in northern Canada! After 20 years of headaches, it has become a part of life for me, however I will NEVER accept them!
Mike Garcelon <>
Meadow Lake, SK Canada
Tuesday, January 11, 2000 at 21:25:53 (EST)

Thank Goodness there are others out there like me and it sounds as if mine episodes are not quite as devastating as some others,
Marcella <>
San Diego, CA, USA
Tuesday, January 11, 2000 at 17:09:11 (EST)

Hi thanks for being here! be hearing from me soon. god bless! m.barron
M.Barron <>
science hill, ky USA
Tuesday, January 11, 2000 at 15:56:57 (EST)

Hi, I'm a male, 49. Had clusters since I was 23; wasn't diagnosed until my brother, also suffering, was diagnosed & we found the same symptoms. I was then 40. I know several guys who also suffer but also have found 1 thing that helps: since I usually get then in Fall and Spring (and migraines during the Summer) I try to change my latitude during the September month by going north or south a few hundred miles for a week or so. This seems to help reduce or even stop the episodes. Since my mother suffers extremely from S.A.D. and some recent research shows that modified lighting helps, I suppose that these items may be related. My friend here in Colorado, for instance, heads to Arizona/southern Nevada for 2 weeks every Fall: I go north to a narrow canyon where the apparent "days" shorten suddenly. Both of us get some relief. Has anyone else out there also noticed this?
M. Paris <>
Englewood, CO USA
Tuesday, January 11, 2000 at 12:09:29 (EST)

Hi, I'm a 49 year old male that has suffered from cluster headaches for about 30 years. I have been to many specialists and found one, a neurosurgeon, that knew exactly the symptoms and medication to take. Unfortunately I do not have the medication nor name of it any more. My headaches were very intense centred over and behind the left eye. I tried steam, head covered in a towel over a boiling kettle or pot, nasal sprays, ice bag to the eye, and many other useless therapies. The headaches were so regular you could set a clock by them. They usually lasted from ten to twenty minutes. My eye would water, the pain was so great no other affliction could come close. As an example I was recovering from major knee surgery that morning, when a headache overcome me. It was so intense the pain of surgery was wiped out. These bouts of headaches would usually last three to four weeks then disappear for months on end. I have lived in several geographic areas of diverse weather, such as humidity, dryness, cold. There appears to be no correlation between as they would come regardless. I have lived at the present location for 9 years and can happily say I've been headache free for the last seven of those years. I don't know if this helps anyone, but all I can suggest is that if you can find a doctor that knows the symptoms, by all means have him prescribe the medication. One note I remember about that medication. It comes in tiny pills that must be strong because the dose calls for thirty days straight of one pill a day, after the first sign of a cluster headache, then a two week interval of nothing.
John Boyd <>
Balmertown, Ontario Canada
Tuesday, January 11, 2000 at 09:23:58 (EST)

Hi,just wanted to express how grateful I am to have happened upon this site. Just knowing that there is a place I can go to meet and share with poeple who truly understand about c/h, is an answered prayer. I am a 40 yr old male diagnosed with c/h in 1987.My cycles come every 3 1/2 yrs and last for 3 months.I am currently in a cycle which started Dec.31 (yep, was dancing with a demon on New Year's Eve).I am using oxygen (helps most of the time) along with imitrex (pill form) which seems to help if I can get it into my system quick enough, also pacing and trying to remember that this to shall pass. Thanks again for making this site available,I look forward to visiting often. John
John W. <>
Florence, MS USA
Tuesday, January 11, 2000 at 04:16:18 (EST)

This has been a great site to do research while dealing with my bout. I usally have one bout a year lasting a month, prednisone and migronol has worked for the short and long term clusters ....Thanks a million..:)
Lance Weakley <>
silver spring, md USA
Monday, January 10, 2000 at 08:50:38 (EST)

One releif that I have found for me during an attack is oxygen at 4 liter rate for 20-25 minutes and the pain is gone until the next night. Only problem I have to go to the ER and many look at me as if I have a simple headach umtil I lay out my medical file. I also try to jog during the day and this seems to help prevent or reduct the evening visits of the demon, I assume this hyperventilates me amd more oxygen has entered my system. Doctors at one time tried morphine but it didn't help the pain, just oxygen. Hopefully, this may help someone.
Fred Gilbert <>
Burke, VA USA
Monday, January 10, 2000 at 08:19:04 (EST)

greetings my tortured comrades. we suffer in silence but our heart cries a loud for sanctuary. it is now eight years, 24 hrs a day,365 days a year, no relief , no quarter given. potions of hope , treatments of promise , all surrender to this insideis phantom. the battle rages for i will not give up without a fight. im on a quest to reclaim my life. i shout boldly to this demon that in me he has met his match. look deep inside yourself and you will see that he has met his match there too. fight bravely my friend for down that road you never lose. greg
greg <>
melbourne, vic australia
Monday, January 10, 2000 at 06:54:04 (EST)

I just started to get these headachs again after about 3 years. Its been around Christmas the last 2 times. I got one last night and through I was going to die. My Doc gives me Fioricet, it takes to long to work. I hope they end soon.
Jim Ferry <>
Trenton, NJ USA
Sunday, January 09, 2000 at 21:22:03 (EST)

I am looking forward to talking to others who know what I am going through. Thanks !!
Lisa Harvey <>
Sunday, January 09, 2000 at 20:27:18 (EST)

My father and I both suffer from clusters, he has been doing it for over 20 years, I just a year and a half but it feels like a lifetime. I just don't understand why the doctor can not give something for the damn pain. Do they think we are drug addicts? I practically give myself a concussion every time I get one from bashing my head into a wall, I can't stay still. I really want to die sometimes and when that happens I get to the Emergency Room as soon as someone can take me and hope like hell that when I walk in the door they believe me and take me back. I actually had a nurse yell at me once because she had already drawn up some demerol and my headache had already gone by the time they got around to me, so of course I didn't want it or need it anymore, she told me not to come back then! I am going to see a new doctor tomorrow, hopefully, he will know what he is doing!
Erika <>
Pensacola, FL USA
Sunday, January 09, 2000 at 17:58:31 (EST)

I am looking for effective medicine against cluster headache which I am suffering from since 1981
Peter Esser <>
Augsburg, Germany
Sunday, January 09, 2000 at 16:33:52 (EST)

Sad to see the same story all over the world but good to know you are out there. Some have found relief... Water, Meditation, Med, Oxygen, Daylight control. Maybe a combination? Started 3 years ago 6-8 weeks 2-4 times a day..Builds and fades, Med works sometimes but not well. Need a head transplant!..Hang in there, they pass after some time.
Adam Falkingham <>
Leeds, Yorkshire Great Britain
Sunday, January 09, 2000 at 09:33:00 (EST)

Glad you have this forum for us sufferers - a wonderful idea!
Deni <>
Logansport, IN USA
Sunday, January 09, 2000 at 08:47:39 (EST)

Just found you guys and girls. Always thought i was alone. Everyone would confuse CH with a migraine. I have suffered for 17 years. The first 10 were chronic. Took every med possible, landed me in the hospital with hepititaus caused by all the meds. My monthly drug bill was about $1100. I tried other avenues. Acupuncture, healer, even the cocain doctor in NYC who would place these metal skewers with cotton balls attached to the end that were moistened with liquid cocain. I also went to the hospital for a three day stay and had DHE drip.I feel that nothing works, not even the meds. The only thing i feel we can do is try to get over the current attack and hope for the best. Imitrex is all i have faith in. I have well exceded the allowed dose in 24 hours. My most was 14 shots in 24 hours. Did i take a chance you bet. But at the time i just didn't care. I have and still do think about surgery. When i do get a repreve from the beast i am still not totally myself. It is always in the back of my mind. I can't remember the last time i was totally pain free physically and mentally. My prayers go out to all of you. Someday we will be free.
george <>
Saturday, January 08, 2000 at 18:37:58 (EST)

I have received much relief by taking 1 Verapamil 120mg daily.
Jerry Taylor <>
Middleburg Hts., OH USA
Saturday, January 08, 2000 at 09:38:45 (EST)

I am a 54 year old grandmother diagnosed with cluster headaches 10 days ago. They started on the 14 of Nov. 99. last night was the worst night of my life. all of my clusters are at night and I have had as many as 7 in one night. So far no meds work. reading about others with the these headaches is a comfort to me. Just got my first pc, and I will probably spend a lot of time here. Dida
Dida <ArchibaldMamare>
Hernando, Ms USA
Saturday, January 08, 2000 at 00:31:27 (EST)

I'm soooo happy to have found this site. I didn't think there was anyone who suffered the way I did. So guys & girls get ready here I come, to vent and share my 20+ years of CH torture.
Sylvia <sil861>
Newark, NJ USA
Saturday, January 08, 2000 at 00:04:42 (EST)

I have been suffering from cluster headaches now for 20 years. I just purchased a computer last week and found this web site. It sure feels good to know that I am not alone after reading some of the other entries. I have tried just about every medication available for cluster headaches and have had no relief whatsoever, my doctor calls me a "tough case". This time of the year seems to be the worst for me, I have been averaging about 4 attacks each day. I guess I just want to say that it feels comforting right now, to know that there are others out there feeling the same way I do.
Friday, January 07, 2000 at 21:42:17 (EST)

I am 50 yr old female who has had CH since age 13. Free for 5 years & they have returned 3 weeks ago. 3 a night within 4 hours. Cafergot is what I take but can't catch the late one. Lasting longer as the days go on. Enrolled in a study taking seizure medication in low doses. Will inform of the outcome. Read about the water thing - will try. Any other fast fixes out there? I am about ready to lose my job due to these CH's. I am suffering from lack of sleep due to the caffine and afraid to sleep as that is when the attacks come as we all know. Really hot shower worked for me once. It wastes minutes while the cafergot takes effect. Why can't anyone find a cure???
Becky <>
Evergreen, CO USA
Friday, January 07, 2000 at 17:57:43 (EST)

I have got to tell you folks, we have got to be the toughest breed of people in the world. I been suffering since my freshman year of college. I'm 25 now and have already dealt with enough pain to last for two lifetimes. The thing that upsets me the most is that NOBODY has ever heard of CH's. I was fortunate to get diagnosed right the first time and immediately began the ever so pleasant ritual of injecting the Imitrex. As a young man trying to make it in the business world, this demon doesn't help much. I'm not quite sure what else I can say to my boss about my absences. I explained my condition the very first day of my employment and initially she seemed to understand. Eight months later, I can tell that her patience is running thin. The demon effects my performance, and by company standards I am not up to par. It is like a Catch 22. When I am in the office I am usually totally exhausted and it is very hard for me to focus also effecting my work. The people around the office know I get these headaches but don't totally understand what that all intails. I am loosing the confidence of my co-workers and my boss has little to no faith in me. I'm actually quite scared as to what her next steps are going to be. If you want to put a classification on my condition, I would be labeled as a Chronic sufferer. There is really no rhyme or reason as to when my demon rears its ugly head. Like many, a majority of my headaches wake me up in the middle of the night. By the time I get back to sleep I feel like I have just gone 12 rounds with Mike Tyson OR I have to go to work. Last week I was in Vancouver visiting my new girlfriend. I told her about my condition shortly after we began dating. One night at about 3:30AM my monster payed a little visit and I basically freaked her out. Seeing me in so much pain brought her to tears. I felt really bad about the whole experience and she felt helpless. I have found some things that help ease the pain but don't totally abolish of it. Might I suggest rubbing a little lavender oil under your nose and breathing as fast and as deep as possible. God bless you all I know what you are going through. I'm sure we have all asked ourselves a million times "Why me?" We'll I'm not sure why, but I am sure glad that I have found this site and all of you. Stay tough and feel free to e-mail me. Robert
Robert H. Mitchell III <>
Boston, MA USA
Friday, January 07, 2000 at 14:50:59 (EST)

Heather is my child will be 12 Feb. 12th. Has had 2 episodes of headaches. First Jan99-July99 second Dec99-now(Jan 7 00) diagnosis has changed several times. Now treated as migraines again to see if that is it. Symptoms are more like clusters. I have never heard of children suffering from them. Drs. wont yet agree with the thought that Heather and I have that they may be clusters. Dad a suffer. Please any one with information concerning clusters in children please, please contact me at She also has constant dizziness either lightheaded or movement sensations which I have not heard of. If anyone knows about clusters in children, please contact me.
Heather <>
Friday, January 07, 2000 at 14:24:41 (EST)

Heather is my child will be 12 Feb. 12th. Has had 2 episodes of headaches. First Jan99-July99 second Dec99-now(Jan 7 00) diagnosis has changed several times. Now treated as migraines again to see if that is it. Symptoms are more like clusters. I have never heard of children suffering from them. Drs. wont yet agree with the thought that Heather and I have that they may be clusters. Dad a suffer. Please any one with information concerning clusters in children please, please contact me at She also has constant dizziness either lightheaded or movement sensations which I have not heard of. If anyone knows about clusters in children, please contact me.
Heather <>
Friday, January 07, 2000 at 13:56:19 (EST)

The first time I had an episode, I though my eyeball was going to explode. I can still remember being in the bar and setting my darts on the railing as I felt this immense pain creeping its way up the base of my skull. I set down my beer, said goodnight to my fiends and drove home the thankfully short distance. The next forty minutes were the most agonizing I had ever known. After that I had many more of those most agonizing days I had ever known. I went to my doctor who told me that it sounded like a cluster headache, but not to worry, they'd go away soon enough and that there really wasn't anything that could be done to help me. I still think he thought I was some kind of hypocondriac, and to be honest, I thought that maybe it was just in my head...too much stress at work or something. But, once the CHs took on a pattern-twice a year, Fall and Spring, lasting a week at a time, I knew there was something wrong, and because of that damned doctor, I just suffered through them believing that there was nothing else I could do short of ending it all, which did seem sometimes to be the only way out. The Beast almost cost me my job because I would be out sick for a week at a time...while the pain lasted only 40-60 mins., it would leave me too drained to do anything but sleep, and when I started the day without a CH, I'd be too anxious about getting one at any moment that I didn't want to leave the house. Luckily, I found a reprieve from hell in the form of an herb called Feverfew. For two years, I had no problems with clusters. Now, however, that blissfully simple, wonderfully effective cure no longer works. I found that out two weeks ago when no amount of Feverfew had any effect. To be plunged back into the hell that characterizes clusters was worse that the first cluster I had-this time I knew what I was in for, and I knew that once again I was helpless. Well, I weathered that session, and now that Ive found this site, at least I'm more hopeful that medical science may, this time around, have something to offer. Thank you!
Ken <>
lafayette, co USA
Friday, January 07, 2000 at 08:30:44 (EST)

I never believed that an OTC product could help my bangers. I always had around 10 pills given to my by friends or family to save in case I got a migraine. In order to not waste a pill on a regular headache, I would wait for it to go away. By the time I took it, it was too late. Since Excedrin was so available, I decided to try them. I knew they wouldn't work. Within an hour, the migraine was gone. My early symptoms are a burning headache and constant yawning. I used to think I was just tired. I would get to where my head would bang with each beat of my pulse, my knees would tremble and I had dry heaves for five hours. I can take the excedrin on an empty stomach when I wake feeling sick and by time I am ready for work, the headache is gone. Sometimes I'm disappointed because I wanted to call in sick. I have given them to many others and they worked for them also. I carry them with me at all times. I have not had a banger since I found Excedrin Migraine (I guess it's been a few years now)
Diane Sittley <>
Pembroke Pines, Fl USA
Thursday, January 06, 2000 at 20:19:25 (EST)

Hello everyone, I am very happy to see that there is a website dedicated to people with cluster headaches. I can't figure out if I am glad to see other people with CH's or sad, however I am very interested in everyone's experiences. Thanks
Jason Gray <>
Atlanta, GA USA
Thursday, January 06, 2000 at 18:50:19 (EST)

I have suffered Cluster Headaches since my last year of High School and am now 39. It wasn't until 3 years ago that I found out what it was. Always thought it was a sinus infection. Three years ago I went to a neurologist, thinking I was having an anurism and he new exactly what it was and gave me prednizone, lithium and verapamil, imitrex and wigrain. After 3months I was not having the headaches at all so I quit all of the meds. Went an full year and three fourths and now they are back. The new doc gave me 40 imitrext injectons, I used to get 2 with 3 refills, gets expensive and ercaf along with celexa and elavil. The imitrex works great and so does the ercaf, like the wigrain. The elavil sucks so far. I stay groggy all the time. And still have the cluster headaches. At least the prednizone stopped the headaches last time until the lithium and verapimil kicked in. I am glad I found your site, it helps knowing that there are others going through the same battles. Please excuse the spelling. Ed Santiago
Ed Santiago <>
Wichita Falls, TX USA
Thursday, January 06, 2000 at 11:51:00 (EST)

Thank you for allowing me to diagnose myself! Excellent site, and precious informations. I already took the liberty of translating it to Portuguese.
Joo Pedro F. M. Graa <>
Lisboa, Portugal
Thursday, January 06, 2000 at 11:44:47 (EST)

I had headaches everyday as a child until I was 23 years of age. I was unable to find anyone who could help me. At the age of 22 I enrolled in optometry school, thinking my eyes were part of the problem. They were. I took therapy every day for a year to get my eyes to work, and since I have had very few headaches. Plus I help others get rid of theirs if they are eye related which a thorough exam will show. Vision should be an effortless pain, no pressure, no pulling, no dizziness, very slight awareness. If it is, then therapy or muscle exercises get rid of them if done properly. If you need a referral in your area for the testing and possible me. It's not conjecture. It works.
Byron Y. Newman <>
Orange, , CA USA
Thursday, January 06, 2000 at 01:53:12 (EST)

Hi! I am a 50 year old cluster getter since the age of 20. I am in my cluster season right now - my 7th day of god-awful headaches. Mine last about two weeks and come just once a year. I can oly get relief form Fiorinal with codeine and they must be the blue and yellow sandoz caps or it won't work. i am really sad to see so many cluster headache suffers. When will there be an answer to our nightmares? may this web page will find the "one" with the answer. I hate going to sleep tonight. last night was the worst. Woke me up with unbearable pain, but you know what that is like. Most people have no idea what it is like. I don't know any person in my work or private life that gets them. thanks for letting me ramble, its the codeine after 7 days, and no alcohol.
Richard Martyn <>
San Francisco, CA USA
Thursday, January 06, 2000 at 01:04:27 (EST)

47 year old female who has suffered with this horrible pain for over 20 years now. at least now someone is out there that understands that 2 advil DO NOT WORK! these headaches have taken control of my life- i don't know how i get thru somedays at work it's horrible. i have been trying acupunture now for about 10 weeks, once a week and it seems to help-the pain is the same but the attacks don't seem to last as long. would love to hear from other clusterheads. than you so much for being here.
christine <>
woonsocket, ri USA
Wednesday, January 05, 2000 at 21:40:09 (EST)

Thank you for this website. My husband has suffered from cluster headaches for over twenty years. My hope is that this website will help us find some relief to this nightmare that he has been living with and some support when all I can do is stand there and know that there is nothing I can do to end his pain.
Mara Dix <>
Jefferson, MA USA
Wednesday, January 05, 2000 at 20:44:44 (EST)

Thank you for this site! Just found it and when I can see I will study it more.
Piper <>
Wednesday, January 05, 2000 at 15:44:59 (EST)

I'm 30,Got my first "skrewdriver stuck in eye" headache when I was 9!I get them every 12 to 24 months for 6 to 8 weeks.Came close to suiside a couple of times when I was younger beacause I was always misdiagnosed.These MONSTERS have destroyed many parts of life.During cycles I take 480mgs. of Verampamil daily.I get 1 haedache a day.When I first feel aura I inject 6mgs. Imitrex in my leg.My leg's like a damn pin cushin.I always think about jamming that needle deep in my left and pushing the plunger.I know it would feel better than our enemy.Today is the first time on any site for me.I read through most of other peoples pages and I almost cried cause I know exacly what you all feel.I'ts refreshing to know I'm not alone.Please respond.
Don McLaughlin <MCLAUGHLIN331@AOL.COM>
Wednesday, January 05, 2000 at 13:40:07 (EST)

Helow everybody, first i want say sorry for my english. Im 32 from Spain (Europe). Im a suffer since 1989 and i found the clusterheadaches yesterday. Ive tested for many years a lots of drug and others but nothing works , then i was introduced in meditation by a friend, and ive got the control of the pain.Now, im able to stop the pain only with the mind.i do not get the peace all the times but the most. I hope this little contibution be usefull for someone. Thanks for your web.
Mario <>
Madrid, SPAIN
Wednesday, January 05, 2000 at 06:29:28 (EST)

I call myself the cowardly lion, but my wife insists I'm the bravest man alive. When the Beast comes knocking and I look in her face, sometimes I feel she's in more pain than me.I wish she didn't have to see me like this. Thank god she is so supportive. After suffering for 16 years I have found the no-drug approch to be the best for me. It seemed everytime I tried a chemical intervention, the pain would return quicker and stronger the next time. It was like I was having withdrawl sympoms from the chemicals in the form of stronger pain. Nowadays I take nothing and the pain seems to be much less and it goes away faster. My only treatment is what I like to call self-induced hyperventilating. (Kids-don't try this at home) I breath deep, many times, very fast. I do this until I feel tingly in the face. The Beast usually begins to exit during the tingly sensation. I'm not sure why it works, but I think there is an increase of oxygen when I do it. I'm not sure anyone should try this, because I'm not sure of the dangers. I like it because it's chemical free. When it does not work, I resort to the old standard, slamming my head against the wall...
Daniel Bothe <>
Syracuse, NY USA
Wednesday, January 05, 2000 at 02:12:29 (EST)

I got the first one when I was 16 -- thought I was having a stroke. The second came in college -- by then I thought it was an aneurysym. Third came years later. My first official cluster (I had several back to back for several days). My episodes have been coming closer and closer together over the years. I'm 31 now and this has been the worst/best year of all: Worst because the pain just wouldn't go away, best because I finally saw a doc and found out that I don't have a brain tumor and I'm not going to die. The pain's so much easier to bear when you're not afraid, and now I'm not alone either. THANK YOU for sharing with me! :)
DeAnna Burghart <>
Laguna Niguel, CA USA
Wednesday, January 05, 2000 at 01:58:39 (EST)

Thank God for every single person who created and contibuted to this site! My CH's started only a year ago, I am 29 and was really begining to wonder what and the heck was going on, not to mention ready to kill my Dr. Now I find 100's of people descibing the exact same Hell I've been going through! I can never thank you all enough, despite the fact I now see my pain has only just begun, I can appropriately advise my Dr. who was almost on the right track, calling them Migraines and prescribing imitrex and ? inderal ? thank you all for confirming that I am not the wimp I thought I was and knowing what treatments to avoid. I am on my 8 th day, the longest one, but it seems to be turning into shadows, thanks for making it somehow more endurable. My only ? is has anyone actually tried to pull their eyeball out as I have been so tempted to do?
Tanya Saylor <>
Buffalo, NY USA
Tuesday, January 04, 2000 at 21:36:56 (EST)

Hi. I have had these CHs for the last 5 years at intervals of 18mths. I have just entered another bout which started just before xmas but now seems to be getting worse with two to three attacks a day, including the infamous two hours into sleep one, trying to get my doctor to understand is proving difficult and his reluctance to prescribe sufficient sumatriptan for my needs at anyone time is driving me insane! It is kind of eerie to read the experiences of others, its as though I have written them all myself.
Tony Sims <>
Birmingham, England
Tuesday, January 04, 2000 at 17:08:33 (EST)

I began having cluster headaches in 1985, and they have never really left me. I was 39 then, 53 now, and while I have not had a significant episode since 1993, I do have mild episodes. My advice to anyone having these horrible headaches is this: if you have not sought treatment, do so immediately. Great strides have been made in treatment, and you do not need to suffer.
John Tarpley <>
Atlanta, GA USA
Tuesday, January 04, 2000 at 15:47:50 (EST)

50 years old suffered since 21 years - cannot believe that only 5 years ago my doctors did not know of cluster headaches.
Steve Hill <>
Edinburgh, Scotland
Tuesday, January 04, 2000 at 08:15:52 (EST)

This is my third session of attacks which struck over New Year, unlucky or what? Average one a day, usually early morning, lasting about an hour and a half. Im 42 years old, married with two kids. Kids seem to have more sypathy than my wife who never seems to suffer any hewadaches at all. Any more info, do ask.
John Harvi <>
Stockport, Chaeshire England
Tuesday, January 04, 2000 at 05:36:33 (EST)

I just "got on line" and I was looking up information on imitrex. Good to know of this site and I plan on marking it to revisit soon. I feel that I have found a place that really understands what I am going through. Thanks.
Randy Spitzkeit <>
metairie, la USA
Monday, January 03, 2000 at 19:59:22 (EST)

46 years old, cluster's sincd 14: I guess thats about 32 years of this @#$%!?. Of course you complain about having a headache, and somone allway's says Oh when I get a headache I just take two asprines; what wrong with you!
Wes Lafayette <>
Pacifica, CA USA
Monday, January 03, 2000 at 18:54:47 (EST)

I've had cluster headaches since I was 15 years old and I am 30 now. Every year they come I think to myself I can't possibly endure the excruciating pain one more time. I am in the middle of an episode now. It's only the 4th week. I'm down to 2 to 3 a day. My doctor blessed me a few days ago with a prescription for Fiorinal to relieve the pain. Imitrex just couldn't cut it after 5 to 6 headaches in one day. We, who suffer with this silent "devil", are stronger than the average. The pain that we endure is more than any person should ever have to experience. I become very depressed and fearful at this time and totally disgusted and disapointed with the medical professionals. Is there no relief in site for us?
Monday, January 03, 2000 at 12:34:44 (EST)

I am a 23 year old female who has now been suffering from what can only be described as horrific headaches for the past month as well as this same time last year. Just recently, after seeing numerous doctors have I been diagnosed with Cluster headaches or "the demon". Although I have yet to find a way to stop the pain that works for me, I was so relieved to discover this site and to know that I'm not nearly alone in this as I felt. Thanks!
Oshawa, Canada
Sunday, January 02, 2000 at 23:21:34 (EST)

I am happy to find thi site,and I will check it from time to time for info for my headaches.
jay dorsey <>
alanreed, tx USA
Sunday, January 02, 2000 at 22:51:57 (EST)

I am a female CH sufferer. I am in remission now for 6 months. Mine usually occur every 2 years. I have a wonderful Neuro that I owe my sanity to. I had been misdiagnosed several times, and she got it right! If you live in VA and want to know who she is just drop me a line. Thank you for this site.
Sunday, January 02, 2000 at 22:23:54 (EST)

Hello fellow CHers, I am a 34 year old male and have been dancing with the beast for about 8 years now. I am currently in a cycle and I am glad to have found this website. Sometimes it feels like you are all alone with this curse. Good to have others to talk to. I was surprised to see other people refering to their pain as the beast, I see that I'm not the only one that sees it as a "living" enemy to battle with. Feel free to contact me by my e-mail, would love to chat with some of you.
Anthony <>
Dunn, NC USA
Sunday, January 02, 2000 at 22:16:06 (EST)

philadelphia, pa USA
Sunday, January 02, 2000 at 14:20:13 (EST)

I am new at this, I was diagnosed with CH 12/31/99. I suspect, I have had them for quite a while, but diagnosed as other problems, ie temporal artitis. All my episodes happen during the winter time. (short daylight hrs) My knowlege of this problem has greatly expanded since I found this site, ( 1 hr ago) I will return often. Got to go drink some water. Thanks. Dick...
Richard Lamphere <>
Flora Vista , NM USA
Sunday, January 02, 2000 at 13:31:07 (EST)

I am 50 years old and have had these headaches for approx 10 years. It was my wife said to check out the net for cluster headaches. I am pleased to find info on this . I will take time to read what others have said and finally I think I know what I have been suffering over the last ten years.
Dave MAcLeod <>
Debert, NS Canada
Sunday, January 02, 2000 at 11:06:40 (EST)

Hello everyone. I found this site, like many of you, while researching CH and migraines. I'm deeply saddened to see that there are so many of us out there, suffering. It is very nice to have a site that I can go to and share my experiences and frustrations with people who can empathise with the pain. I'm 47 years old and have only suffered with CH for about 5 years. I went through the whole gamit of tests - teeth, MRI's MRA"s,etc. with the final diagnosis that - well your problem doesn't fit anything else - so you must have CH! I always remind myself that medicine is not an exact science... Has anyone yet proposed sainthood for the discoverers of Imitrex?
Ed Rock <>
Baldwinsville, NY USA
Sunday, January 02, 2000 at 03:08:30 (EST)

I am a 29 year old female who has suffered with the demon since I was 19. Presently taking steriods and Verapmil. Nothing seems to help them this time around. I just moved across the country and have no support here, and no medical insurance to speak of. Everynight they keep getting worst and everyday I feel like I have a hangover. Can't wait to hear some suggestions from other sufferer's.
Vicky Driscoll <>
Los Angeles, CA USA
Saturday, January 01, 2000 at 18:53:19 (EST)

William here,At 42 I have been told that I now suffer from CHs.It took 3weeks and two trips to the ER before I found that I am one of the unlucky.They started 9wks ago and my life has been a living hell since,all three holidays ruined,and I have withdrawn from all social activitys. I sorry to whine most of you people here have been dealing with these monsters for years,and Iam complaining after only a few endless weeks. It is great to know of this site,people who understand,It seems everyone I talk to has had bad headaches...they don't even know,these arn't bad there unbearable! Thankyou all for making this site,I have many questions so if any of you long timers or short have some advice I'd love to hear it. Again Thanks,William
William <>
greenfield, Ma USA
Saturday, January 01, 2000 at 17:43:24 (EST)

i am 30 years old and have had clusters for 7 years. they are the worst thing known to man. if any one knows of a cure or any info about surgery please e-mail me. i've tried every thing and just about every med. thanks!!!!
jimmy l <choch712@aol>
philly, pa USA
Saturday, January 01, 2000 at 13:43:34 (EST)

I have had clusters since i was 17, it wasn't until i was 29 until i was diagnosed correctly. I have found during a cluster, i can't eat chocolate, peanuts, yogurt, absolutely no alcohol!!! I get clusters every year & 1/2, they last for 2 months. Although, the last two cycles i've taken verapamil, which has made the cluster last to 16 weeks, just not as bad. Thanks for being here!!!! Deb Clifford
Debbie Clifford <>
Lancaster, Oh USA
Saturday, January 01, 2000 at 09:41:37 (EST)

hi i've probly screwed up . i just wanted to talk to somebody.i've been with this site for a while .its 6:20 am. 1,2000 i had a headache took my imatrex, its gone now .thankgod. was reading a few letters.been having a bad time with them not like anybody hasn't.but until we turned the clockes back i was 1 ache every 2 weeks . now 2-3 a day and getting back to 4-5. new meds. now there for antisiezier??? asked about an op. doc does not want to do it until last extreme .a couple of side effects we both don't like .but i think i might try it anyway,i'm tired of the pain,and the family seporation .no matter what the prob. is dont bother your father he has a matter how bad the head hurts (and it hurts real bad) not being able to talk to my daughter in my heart hurts a little i might try to risk the side affects and maybe take the op. i love this site even though no one is there i know i'll still be heard and for some reason thats comforting i don't know why . going to try to go to bed now i think i might get a way with it,or i'll get 45mins and blam anotherone oh well! happy new year to all sufferors and hopefully this is our year and god bless.
roy mc <>
phila, pa USA
Saturday, January 01, 2000 at 06:44:48 (EST)




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