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Posted by Yoke ( on August 20, 2001 at 12:29:30:

could do with a few mails from younger members.
This is what she wrote
Hi i'm 16 years old and i have cluster headaches. When i get my headaches the pain is so bad i just sit there and cry and hold my head just wanting it to fall off! sometimes i wish i could open up my skull and grab my brain out and massege it. My headaches get so bad that i might not go to school for a couple of days which is bad because i get so behind in all my work, even when i'm at school and my headaches come one i cant concentrate i cant think i cant do a thing. I have taken medication to treat them but they dont seem to work imagram made me sick. i'm now taking endep in the morning and at night but still they dont help all they do is make me sleepy. i'v read things about other people banging their head on wood floors but i dont do stuff like that because when i get mine it goes into my neck and it hurst when i move it so i just try ,try my very hardest to sit or lay there without moving but of course it hurst so much that i cant. I'm glad that i have found others out there that have the same problem as me because they know how i feel and i know how they feel. If i could have one WISH it wouldnt be for a million dollars it would be to find a cure for these headaches so that we could have a normal life!!!!!
moe, vic australia
Monday, August 20, 2001 at 03:58:25 (EDT)
Hello everyone. Thanks for this site. I have had cluster headaches for 35 years. Doctors have treated them as if they were sinus problems. I have had two noise operations. I have taken 3-4 times the dose of 12 hour sinus pills during attacks. My attacks would come 3-4 times a year. For 4-5 weeks at a time. Three attacks a day for 1-3 hours an attack. Three weeks ago my doctor was totaly mystified why I was still getting pain. She was looking through a med book and was readin the symtems off. 1) Slight discharge from the eye or nose(Uh-huh) 2) Pain on one side of the face (yah) 3)Sharp blinding pain (YES) 4) Fast biuld up of pain and just as fast ending of pain (YES YES). For the first time in my life I had someone say "This is what it is" not "It could be..." That night my I found this site. I am so hopefull about my attacks today. I started to take pregnazone (?) the next day. With in two days I was having attacks that last for just minuets. Sometimes as quick as I would feel the too familer ping in my noise that always would mean I about to lose an hour or two of my life again. But today that's as far as it goes. Just a "ping" and no more. The good Lord has answered my prayers. Once agin thank you for this site. It has given me hope beyond all hope. I will be with you all for the rest of my life.
Bill Whalen
Hayward, CA USA
Monday, August 20, 2001 at 02:09:21 (EDT)

Hello other CH suffers. I have been suffering from Cluster Headaches since I was 16. The clusters usually come on about every one to two years. I will suffer from one every night for about 30 days or so. The headaches come on when I am resting or in my first stage of REM. If I feel one coming on, I will take Excedrin-Migraine tablets and it usually will go away before it is full blown. While I am waiting for it to subside, I will hold my breathe and bare down for about 10 seconds and repeat as necessary. This seems to help. I guess this helps slow the blood flow through the vessels. If I awake with a full-blown headache I will rely on Inmitex Nasal Spray. It's a bit cheater then the shots. I used the shots before but they are so expensive. Inmitex nasal spray is the only medication that helps when it is too far gone. The headache usually subsides in about 20 mins. Hope this information can help any of you CH suffers. I am currently suffering from them right now. I am in my third week. I should be done in about one week or so, hopefully sooner. I am so glad to know I am not alone and have the support of this website. Thanks, Hope you all have a restful night.
Cincinnati, OH USA
Sunday, August 19, 2001 at 21:03:17 (EDT)

I'm 35 and have suffered from chronic cluster headaches since I was about 21. My first headache was when I was 18 and had no clue what was going on. Right now I'm in the middle (I hope) of a cluster and really depressed. I'm afraid to go to sleep at night, since that's when the majority of them hit. But yet, they say that lack of sleep can trigger that's ironic. Most are manageable, actually I think my pain tolerance level has increased, but some are outrageously bad. I just want them to stop. My son gets really scared when I'm in the middle of a headache, but there's nothing I can do but sit there and rock and tell him I'm ok. I don't think he believes me. I've tried the verapamil and that was a joke. I'm ready to go back to the doctor and ask for oxygen, but I don't know if that really works. Anyway, thanks for being here.
Rock Springs, WY USA
Sunday, August 19, 2001 at 19:49:33 (EDT)

So Very Glad to find this site and the board.....finished having a ch about three hours ago and dreading the next one...been suffering one or two cycles per year for over 30 years and never new there was this much information out there. At least I'll know there is comfort in numbers next time i am embarrased about grinding my fist into my eye or banging my head into the floor....also there is someplace I can send "friends" to so they can understand a little of what is going on......... I am also diabetic.....any correlations with diabetes or blood sugar levels and CH trigger?????????? Thanks again, H
Howard lenett
Austin, TX USA
Sunday, August 19, 2001 at 18:35:43 (EDT)

I was reading through the postings and I am truly amazed at how many people suffer these types of headaches. I am 43 years old and I have suffered, what I thought were migraine headaches, for many years now and until two days ago I had never heard of cluster headaches. At first I refused to believe that I suffered from this illness but after reading through this web site and finding what the symptoms are, I am now positive that this is the illness that I suffer from and probably have been for years. I'm a little scared in that I believed that I had migraines and knew something about it and now finding out that I have something that I know nothing about. I do feel comfort in knowing that there are people that I can talk to that understand what I am going through.
James Taylor
Silt, Co. USA
Sunday, August 19, 2001 at 00:00:38 (EDT)

Heres some tips from a CH veteran. Remember the 'beast' is cyclic. Thats how it gets back in every time you find something that hinders it. It simply adapts to a new cycle. Try to throw the beast by breaking your own cycles. The weapons I use to achieve that are painkillers and caffeine. I use quick acting and slow acting painkillers randomly taken along with random infusions of caffeine e.g. 3 cups at once, then none for hours. These two things affect the conscious state. Add to that a muddled meal schedule ( e.g. coffee for dinner, main meal at midnight), irregular sleep times and artificially induced hot flushes of the face, and you have one confused and dizzy beast. Oh, and if it works one day DON'T repeat the schedule the next day. Randomness is the key. Don,t allow a cycle to become established. The hot flushes can be induced by sniffing 4711 (a type of cologne) from a tissue, eating peperoni salami ( find a brand with the right blend of peppers to heat the face rather that burn the throat or try Wasabi( a sauce used in Japanese cooking). Of course keep your Imitrex near-by but only use it when your attack has fully set in. Vary your relax times. This is VERY important.That means no regular TV times or the like. Punctuate the day with random exertion like push-ups or wood chopping.Remember, at random times on random days. Lastly, NO ALCOHOL! All the best.
John Verkerk
Christchurch, New Zealand
Saturday, August 18, 2001 at 21:15:43 (EDT)

I thought I would post a short note in here, praying that my Dad will read it. See, Dad has been suffering with CH for about 10 years. I was home in Iowa visiting my folks this June when Dad was at the "peak" of his attacks. I have heard him and Mom talk about the pain that he goes through and since I live so far away I have only imagined what it was like for him, actually for both of them to live through this agony. Being there for 10 days I was unfortunately able to see him suffer. I cannot express enough how upset I got. He sent me to Walgreens to get him another supply of Imitrex and I cried all the way there. Seeing my Dad, that tough, hardheaded, man of steel sitting there in the recliner rubbing his temples like he was tring to push a hole through them. I am a pretty tough lady, but seeing him like that was enough to bring me to my knees, praying with all my might that the pain would stop. Praying that my Pops will be OK. I wrote him a note a few weeks ago and told him about this site. Hopefully he will take the time to get on and talk to all of you. If anyone is able to email me, I can give you his email address and maybe you can initiate the talks with him. All of my Prayers, Rachel
Albuquerque, NM USA
Saturday, August 18, 2001 at 13:21:51 (EDT)

Morning everyone! It's 7am and rather than going back to bed I thought I'd try & string a few words together. 29 yrs old, and have suffered tension headaches, occasional migraines and regular loss of vision in left eye (last 30mins - 1 hour) for years. In last 12 months or so have been on a health kick; bought a mountain bike, started running, weight loss diet, drinking less beer and lots more water, and quit smoking (biggest achievement in life so far). And guess what: going blind nearly every other day, and waking up to 3am pain like meathook through left eye which exits thru left temple. You know the pain, but I thought I was going doo-lally. Have had MRI and cardiovascular x-rays, plus opthalmo-neurologist said "dunno - try not to worry about it". General practitioner advised preparations for sinus, which is now probably dried out for life! Have yet to be diagnosed with CH but am going straight to the top to see Prof. Goadsby nxt month (the ONLY benefit to living in England!). Maybe then I'll be able to get something other than codeine, which I am taking x4 daily + Syndol and/or coproxamol to try and defend myself from this insane pain. Doesn't work, but helps me sleep and makes me docile rather than ratty! Alcohol is No.1 trigger. Only way I can deal with pain is to go for a walk either talking to myself or listening to angry music on headphones. Hope the police don't stop me (I'm always pounding the pavement with tears in my eyes between 3 and 4am) as they would think i was drunk/nuts/out on a robbery! thanks for listening. Toby. p.s does anyone else have eyelid that never seems to return to its usual perkiness anymore? Mine looks pissed all the time, especially after blindness. THANKS X 1000 for this website. Peace to all sufferers.
London, UK
Saturday, August 18, 2001 at 02:21:56 (EDT)

Well, it has been 4 heavy weeks now and this is the first evening i can spend behind my computerscreen without dying. Wow, what a stories I have read on your stories and, sorry, to bad for me i matched with to many of the stories....yes we are family, i had to cry and laughed my ***** off, about the situations we all have to go through like docters, family or friends that "just know" it is migraine or you should work less hard. Or thinking it is in your teeth, or worse throwing out some of your chewingtools...and, later, finding out you have CH. I myself inherited it from my father, my sister gets the money (just a joke). I recognize the feeling about real joy and love for the person that finally tells you what the problem is...i could almost marry the guy on the spot, girfriend did, fortunately, did not approve that, for which i thank her. Thanks 2 for her support. Thanks to all husband, wifes and friends that have the patience and strenght to support their partners. The last thing is want to mention is the desctiption of CH as a beast. Yes, DEATH seems almost a better cure, this animal does the job and you know it is going to... OUR BEAST is mean and likes to play, every day, in and out, and leaves us,...barely alive behind with just enough energy to recover for his next show.... Goodluck to all of're not alone !!!!
Wil Schmitz
Friday, August 17, 2001 at 16:45:46 (EDT)

Anybody have any better results going to Cleveland Clinic,since my doctor fees he's done all he can? Any comments? Thanks,cussy
Tim Custer
Toronto, OH USA
Friday, August 17, 2001 at 03:55:03 (EDT)

Suffered since age 12, now 52. Get cycle once every 1 to 2 years sometimes, 3 years (but only once or twice in 40 years). Starts with 1 a day medium pain level, builds to 5 0r 6 a day, excruciating pain level, tapers back down 4, 3, 2, 1, gone for another year or two usually. Cycle usually last 3 to 6 months. Current cycle I'm in now has been 8 months. Moderate to heavy smoker, Drinks alcohol when not in cycle, can't drink during cycle, alcohol immediately triggers CH when in cycle. Oxygen is the only thing that I have found so far that helps. Before O2, would throw up once or twice, get knocked out by pain, when I would awake entire left side of head would feel like pins and needles, like your leg going to sleep and then gradually waking up. Since I have used O2 intensity does not get that bad, no sickness, no passing out, no numbness or pins and needles when CH leaves. O2 usually works in 15 to 20 minutes on most CH attaches, a real bad one sometimes takes 45 to 90 minutes for it to kick it. Thank God for O2, it has surely helped since 83 when I found out about it, until then no help. If anyone ever finds a cure, or a cause that has treatment, PLEASE LET ME KNOW IMMEDIATELY. THANK YOU!!!
G. (Mack) McMahan
Tucson, AZ USA
Thursday, August 16, 2001 at 20:52:38 (EDT)

Suffering for 12 years, and each year they get worse, or should I say more frequent. Is there any light at the end of the tunnel. Has anyone ever been cured?
Russell Gibson
Kutztown, PA USA
Thursday, August 16, 2001 at 16:47:28 (EDT)

Found the web site today and after reading some of the areas found myself feeling a little "weepy" about it. (Which happens during CH season, a little more often) How great to find a forum for info. I'm a distance runner and have found that running in the heat has been a trigger for the first time in my life (I'm 38 and have been a "clusterhead" for about 12-14 years -- who's counting). It can be a little de-motivating to stay in shape when you know the beast is waiting for you at the end of the run.
Scott Evans
Charlotte, NC USA
Thursday, August 16, 2001 at 16:41:20 (EDT)

i am 47 old male i have c/l for 7year. they last about 1-3 mouths at at a time.i have ben in out of hopital many times.i think i have try ever thing.they come when they want to and go when they dam good and ready to.
crown point, in USA
Wednesday, August 15, 2001 at 20:45:04 (EDT)

i am 47 old male i have c/l for 7year. they last about 1-3 mouths at at a time.i have ben in out of hopital many times.i think i have try ever thing.they come when they want to and go when they dam good and ready to.
crown point, in USA
Wednesday, August 15, 2001 at 20:25:39 (EDT)

i am 47 old male i have c/l for 7year. they last about 1-3 mouths at at a time.i have ben in out of hopital many times.i think i have try ever thing.they come when they want to and go when they dam good and ready to.
crown point, in USA
Wednesday, August 15, 2001 at 20:25:35 (EDT)

i am 47 old male i have c/l for 7year. they last about 1-3 mouths at at a time.i have ben in out of hopital many times.i think i have try ever thing.they come when they want to and go when they dam good and ready to.
crown point, in USA
Wednesday, August 15, 2001 at 20:25:32 (EDT)

Hi everyone ! I have had C/H for 20 years my cycles use to run 3 months on 3 months off . this cycle started 2 years ago ! I have been fighting this beast every day for two long years! I have tryed every med from a to z the only med that helps a little is maxalt . i was on imatrex for six years and it quit working .I go to see a so called (headache specialist) on Oct. 1 it is going to be a long wait .hope he can help ! after 20 years of C/H you would think i would be a headache specialist !(LOL) iam just a pain specialist but i have been iam just a pain. thanks for your time ! I HOPE YOU ALL HAVE PAIN FREE NIGHTS!!!!
Tim Wingert
Ft. Loudon, Pa USA
Wednesday, August 15, 2001 at 18:54:12 (EDT)

I just found your website. It is really helpful to know that others suffer the same agony that I do. I have suffered from CH for about 13 yrs although I got a break for the last 4-5 yrs with no pain. Just when I thought they were gone they came back. Fortunately I only get one attack every couple of days. The pain seems more intense this time. As I have yet to find anything that helps with the pain, the information on your page is great. I now have some new things to try. Thanks.
Richland, WA USA
Wednesday, August 15, 2001 at 17:35:37 (EDT)

I am having another attack. i would do anything not to have these anymore, anything. this is my third eposide. my attacks started seven and a half years ago. seriousley thought i had a tumor behind my right eye. the doctor put me on codine for the pain, becouse he was a family friend and he did know the history of my mother migranes. after visiting an opthmalogist then a neurologist i was diaganosed with cluster headaces. the pain had gone away before i was prescribed anything. two years laterit came back i was prescribed imitrex injections (miracle drug). made it through that episode okay until i ran out of injections.i just wanted to die. now it is that time again another two and a half years and its back. do have my miracle drug (imitrex) but the beast is visiting me more often this time and i can only take so much in a 24 hour period. great site. first time visiter and finding it very informative. now i am going to try the O2 for the attacks at night and when i am at home. saving the shots to keep on living in the outside world(going to work etc.).thanks for the info, i will return.
Elizabeth, PA USA
Wednesday, August 15, 2001 at 11:16:05 (EDT)

I get cluster headaches every two years (for the past ten years). Typically in the spring (but this year also in August), about every 2-4 days and typically in the first REM phase of sleep.
Jim Rivard
Wyoming, MN USA
Wednesday, August 15, 2001 at 07:20:49 (EDT)

The suckers started when I was 18. Thought some invisible apprentice carpenter was trying out a 20mm drill bit on the back of my eye and my front teeth below it.Then 20yrs later they bring Imitrex to NZ. Cost the taxpayer $85NZ per jab. Cost me just $15. Stick that needle in my flesh, watch the clock count 90secs and feel my 'friend' just slide out my face. No-one but a clusterhead can know the heaven of a cluster headache just sliding out your face.Today,(5 yrs later) got a new lot of jabs for my latest round.$15NZ for six shots. We may not be a world economic power but the powers that be in NZ take care of their cluster heads. I thank God for them.
John Verkerk
christchurch, New Zealand
Wednesday, August 15, 2001 at 05:30:41 (EDT)

Hi I have has these for 11 years now.I am 29 yrs old and they started in highschool.would like to here from others who can understand what this is like to live with.thank you
Tuesday, August 14, 2001 at 20:51:08 (EDT)

Hi everyone! I am a 23 yr old woman and have had cluster headaches for 2 yrs now. I am very thankful to find this site and to know I am not the only one out there that get these horrible things!
Evansville, IN USA
Tuesday, August 14, 2001 at 14:40:20 (EDT)

Try a personal steamer - seems to help me
Downey, Ca USA
Tuesday, August 14, 2001 at 03:52:28 (EDT)

I was diagnosis with Gray's Cluster Headaches in 1974. I also suffer from coronary artery spasm that is cyclic similiar to the cluster headaches. Thank heaves they don't arrive at the same time. My physician has tried every type of drug without any results. Oxygen sometimes reduces the pain, but the only way to totaly get rid of my headaches is to sit quitely and attempt to relax. At the same time preying that my head does not explode. I am open to any new suggestions, believe me I have tried just about everything.
Jack Cassity
Baker City, OR USA
Monday, August 13, 2001 at 20:51:48 (EDT)

Hi, My name is Nikki. I was just diagnosed with cluster headaches on Friday. Before that time I was in 5 weeks of excruciating pain. I kept going back to the doctor's office. They told me I had migraines and gave me a prescription for Midrid. I made an appointment with the dentist because I thought it could be a dental issue. Sure enough I had 3 cavaties so I thought this is the reason, all I have to do now is get some fillinfs. What a mistake!!! I had a left-sided headache that was so intense for 5 weeks. I was waking up at 2 and 3 o'clock in the morning walking around my house crying and hoping I would die!!!!!!!!! So I went back to the doctor's office. She referred me to a Neurologist who pretty much told me I had a migraine syndrome. He gave me 2 prescriptions. They did not work. At this point I was desperate to relieve the pain. So I was taking up to 3,000 mg of Motrin a day, along with 6 Tylenol PM. My stomach was a mess. I lost 12 pounds. I couldn't work or take care of my children. My husband thought I was going to die. He would see me twisting on the floor, crying, and banging my head. I thought I was dying. And so did everyone in my family. Finally I went to the emergency room. i told them if they didn't help me I would kill myself. They set me up with morphine and sent me to another Neurologist. Thank God he was familiar with my symptoms. He right away started me on cluster headache therapy. He also gave me a narcotic to stop the pain until my system adjusted to the therapy. I finally was able to sleep for the first time in 6 weeks this Friday 8/10/2001. I was told that clusters are more common in males. But as soon as I visited this site I knew definitely that this was what I was suffering from. Thank you for this site. I thought I was the only one in the continent. nikki
boston, ma USA
Monday, August 13, 2001 at 12:52:58 (EDT)

This is more a re-visit to a wonderful home away from home during the years of hell on earth with cluster headaches. It's been 18 months that I've been CH free!! Like everyone, I've thrown anything and everything at them in all different combinations. The combo I was taking when they last stopped was Depakote 250mg 4X daily, Verapamil 240mg 3X daily, and Feverfew 1000mg daily. I was using Imitrex spray, Zomig, and Propoxy-N/APAP for actual attacks and accompanying pain. Pain is such an understatement, yet our language lacks the right descriptive word. I've scaled back to Depakote 240mg 2X daily, and Verapmil 240mg 1X daily, and Feverfew 1000mg daily. Every day of freedom is the sweetest taste, though the fear and memory always lingers like a cloud on the horizon. Either I've been lucky or the meds are working, or a bit of both. I know in the nightmare clutch of living with cluster headaches I often thought that it could never be good again. Patrick
Patrick Leer
College Park, MD USA
Monday, August 13, 2001 at 12:22:48 (EDT)

Age:52 30 year history of cluster. 4 years ago diagnosed with type 1 chiari malformation of cerellum. Headaches are now classified as "complex" (Mayo Clinic diagnosis). Have had 5 major periods (4 - 6 months) resulting in full disability. Am never headache free. For the last 4 years, have been on a "pain maintanence" (Nubain and Topamax)program since imitrex and DHE 45 no longer work which allow me to function responsibly. With nation - wide shortage of Nubain am forced to use Talwin IM with less than success results as my Doc's are unwilling to be realistic about chronic pain management medications
Steve Beck
Rochester, NY USA
Sunday, August 12, 2001 at 21:19:04 (EDT)

I have always thought that I suffered from migraines, and it was a huge relief to find this site and realize that its been cluster headaches. My worst attack happened three nights ago and I still feel drained. I've never experienced pain like that before. With me, the pain starts as heat around my right eye and then intensifies. Often they aren't too painful, but occasionally it is just unbearable. I'm anxious to find a treatment for this. Thanks.
Toronto, on Canada
Sunday, August 12, 2001 at 20:07:50 (EDT)

I have had cluster headaches since the age of 21 (now 38), generally Prednisone has controlled them, but not this time. Help
Gail Tunnicliffe
Auckland, New Zealand
Sunday, August 12, 2001 at 17:31:59 (EDT)

i don't know what kind i have eyes, forehead,cheeks, teeth and my blood preesure is 162/80 is it caused from hi blood ? or just plain allergies?
yukon, ok USA
Sunday, August 12, 2001 at 17:26:55 (EDT)

imitrex imitrex imitrex! Thank God for it.
Jack Jenney
Oldsmar, FL USA
Sunday, August 12, 2001 at 13:12:44 (EDT)

Hi very dear friends, because if you suffer CH,s i understand. I,m 45 nad have suffered since I was 10 years old. Mine run in 3 month cycle's starting slow till the 2nd month where they are at their worst. during the third they gradually go away. In 1990 I saw a nuerologist who put me on verapamil sr 240, and indomethecin, 1st is blood presure medicine,2nd is very powerful anti infamatory. These worked untill this year, My new doc, who checked on everything i had tried said I was moving to the 2nd level of drugs in my fight, I'm now on:verapamil still, carbatrol, this is a seizure drug,prednison, and remeron which is an antidepresant. sounds like a lot I know but he's trying to find what works now. I've been suffering for almost 5 months now, but by using these drugs properly I've been able to keep working and maintain my home. I do have insurance this time and that helps. These drugs are very expensive. In 1985 I lost everything I had, I had to move in with my inlaws. I do'nt own a gun for I would have used it NO JOKE. I've found the best thing to do is search your area for a neurologist who knows CH, ASK before you go if he treats CH. You may have to go through some different drugs till you find what works but it's worth it. So please see the correct Dr. for the job. I hope the best for all, If you dont have insurance tell the doctor, he can give you samples to see if the drug will work before you spend 80 dollars on something that does not work. I'll drop back in to read more and let all know what I end with that works. take care and remember there's help, we just have to find it and thats one more frustration I know but if you can make through CH's you can find what works for you. bye
Robert A. Echols
jonesboro, Ga USA
Saturday, August 11, 2001 at 20:00:31 (EDT)

I am a 31 year old woman and have been a "clusterhead" since I was 18. I am in the midst of an episode, three weeks in, three or four weeks to go, and am not sure how much more I can take. I am happy to have found this site and read what others have wrote. No one else really understands what we go through, even the one's that try. Thanks for being here.
Erica Howard
Seattle, Wa USA
Saturday, August 11, 2001 at 02:13:05 (EDT)

Hi! Just found this site tonight. I have had a headache for a week now. Not near as long as some of you but I get them frequently. It starts in my left eye and radiates out on the left side of the head. Nothing seems to help. The Doc. gave me sinus medicine a year ago but that was a waste. Never heard of CH before. Thought I was having migraines. Now I am not sure what I am having. I don't hit my head on anything or roll on the floor but the pain is very bad and just doesn't seem to want to let go. Feels like the whole left side of my head is throbing and pulsing at times. Well just wanted to unload a little. good luck to all of you in your search of a pain reliever. If you find something please let me know.
Price, UT USA
Friday, August 10, 2001 at 22:42:47 (EDT)

I am a chronic sufferer of Migrane and Cluster headaches. I have had a headache going on six days today. Yesterday I saw my chriopractor and they did some treatments but ever since yesterday these treatments were followed by severe nausea. I have experienced headaches all of my life especially migraines, but I have never had one last more than one day. Please help! If you have any suggestions for a home remedy please E-mail me at...
Lisa Shovan
San Diego, Ca USA
Thursday, August 09, 2001 at 21:04:25 (EDT)

Hi everyone! I've had cluster headaches for ten years, with the last six being the most severe. Right now I'm in the sixth week of the lastest cluster and the clouds may actually be lifting. I've been CH-free for 48 hours!!! (knock wood). I've been taking amyltriptamine for two weeks now and it seems to be starting it's prophylactic effect. I've been using Imitrex inhalers and injections to treat the attacks. It works most of the time, but now I'm three months behind on my mortgage and I just got a foreclosure letter in the mail. I own my own business and not only have I been spending my money for supplies on Imitrex, but I am chronically behind on my work and have lost several clients over the years as a result of my CH. I also have long hair and play in a band, so everyone assumes that I'm some kind of drug addict because I look so ragged and haggard from the agony, lack of sleep, Imitrex fog, constant stress of trying to keep my business running during a cycle, and FEAR that I'm going to lose everything I've worked for to these God-forsaken headaches. I try to keep it all in perspective; I don't have cancer or any life-threatening disease, and my kids are beautiful and healthy, but it is hard to keep a positve attitude when there seems to be no end (or limit) to the pain. It does help to know that I'm not alone. Thank God for Imitrex, but the amount Glaxo-Wellcome charges for it is extortion, plain and simple, and the insurance companies won't touch me unless I sign a waiver excluding TX for CH. Does this sound like your life? Thank God for my kids and my girlfriend. I couldn't survive without their help and understanding.
Bruce Jones
Phoenix, AZ USA
Thursday, August 09, 2001 at 00:45:06 (EDT)

Hi everyone. I just found this site and am encouraged to learn clusterheads can come together and talk. Thank you DJ.
Grand Rapids, MI USA
Wednesday, August 08, 2001 at 23:14:14 (EDT)

Hello, just dropped by to ask a question of you people (first time). I just withdrew a percentage of Clonazepam too fast, it would seem. I now have what I call the "axe headache" in the back lower part of the head, after what felt like seizure, and it come like clockwork 4 x a day. It is accompanied by feverishness, weird sleepiness, but not, and electric zaps and electric cord sensations in the neck. I called my doctor - thank God I called my doctor, and it is not seizure or something else by description - it IS witdrawal. It's getting a "little" easier by the day (5 days now) but it is sickening... My question: anyone know why it comes cyclically? And i hope it goes away. Any comments or similar experience would be welcome to hear. Thank you Squiggles
Montreal, CANADA
Wednesday, August 08, 2001 at 18:54:46 (EDT)

I have just been diagnosed with Cluster Headaches. I am a music teacher and it seems like everytime I sit down to the piano I have an attack. Reading some of the stories my headaches do not sound as bad as some of the people here on this site. I don't have pain enough to bang my head into the wall but I have pressure around my eye and forehead and lower face. I thought I was alone in this!! I am learning to deal with these better and better. Thank you to all who wrote their stories, the stories have really helped me in my quest to understand this situation. Thanks Gary Houston
Gary Houston
Colorado Springs , Co USA
Wednesday, August 08, 2001 at 17:55:41 (EDT)

I have been suffering cluster headaches for about 24 years now. Mine are (fortunately) not chronic, and have been recently infrequent (my last episode / cycle was in January 1997, and I am unfortunately moving into another cycle right now (August 2001). I found that steroids (prednisone) works for me as both a preventive and semi-abortive (if started too late to prevent, it will at least mitigate the cycle in both intensity of headaches and duration of the cycle) and 100% oxygen for 10 minutes works as an abortive measure every time.
Paul John Russo
Glen Allen, VA USA
Wednesday, August 08, 2001 at 16:58:05 (EDT)

My episodes come every TWO years and last for about a month. Has anyone heard of this before?
Dave Richbart
Orlando, FL USA
Wednesday, August 08, 2001 at 15:05:54 (EDT)

Thank god for this site. I have been a sufferer of Clusters for the past 15 years. I have tried every drug going, even morphine with no relief. After years of trying to educate my doctor of this, I finally recieved oxygen which for the mild attacks at the beginning relieves alittle. I am today going to speak to a Accupuncturist as I have just started my attacks. My attacks last for approx 1 - 2 hours and can go on for 13-15 weeks. I relate to all the messages I have read on this site. I to do not want to sleep, but my attracks also come through the day. I will gladly be a GUINEA PIG, if it means all us sufferers can be in peace.
Dawn Rocca
Scunthorpe, England
Wednesday, August 08, 2001 at 06:47:25 (EDT)

Hi,I'm 47 and I have been a clusterhead for 20 years. I've been in cycle for 16 days now and tonight the Beast came again. But, I won tonight and I'm so excited I just had to share it with all of you. Being able to avert an attack with exercise (shoulder-rolls with 55lb. dumbbells; and windmilling my arms for 30 minutes)is such an empowering and blessed feeling I had to share it. I don't know if I will be able to do it again, but right now I feel good,very good!
Wednesday, August 08, 2001 at 04:57:23 (EDT)

I have been suffering from clusters for 20+ years. The most effective abortive treatment I've found is 1 Fiorinal (butalbital, aspirin, caffeine), 1 Imitrex (pill), and 600 mg Ibuprofen at the first hint of one. The only problem is that it takes 45 minutes to begin working. By that time the pain is nearly unbearable. After reading so many positive comments about oxygen, I am anxious to try it.
Kevin B.
St. Louisq, MO USA
Tuesday, August 07, 2001 at 22:21:45 (EDT)

Can anyone tell me me if ch's kinda start all at once, or have i been having them for a long time and just dident know any better last family doctor said possible migrane new family doctor said on 8-5-01 cluster headaches any info. will help thanks to all p.s. i have had headaches seense last sunday 7-29-01 andt this sunday 8-4-01 with a couple durning the week all at about the same time all with same pain left side of head, stiff neck, sinus dripage (runny nose) and/or congustion, sensitive to bright ligtes. Igo to get a scan M.R.I. on this thursday 8-9-01
larry K.
Walbridge, oh USA
Tuesday, August 07, 2001 at 21:40:40 (EDT)

hello, i'm a 37 yr. old male. i've suffered clusters 4 20 yrs. i think i've tried every possible remedy out there. thank god i've have a understanding wife.
levittown, pa USA
Tuesday, August 07, 2001 at 19:52:33 (EDT)

who knows some details about lithiumortat ?
Munich, germany
Tuesday, August 07, 2001 at 04:09:02 (EDT)

My God. After reading some of the entries on the board I don't know if I should be relieved or horrified. Some of you have suffered for decades! I am a long time girlfriend (13 yrs) of a sufferer (4 years - each year the bouts start one month earlier) and it is so nice for both of us to see that we're not alone. It breaks my heart to read so many stories that sound so much like ours. For a long time we were convinced it had to be a seasonal allergy because they came at the same time of the year. We finally were surfing the web and accidentally clicked on cluster headaches on a migrane site and blam! It was like he could have written the page! The diagnosis was not as hopeful as we thought it would be since there really isn't any one way to treat clusters and certainly finding the right combination of what works for you is a never ending process. He is on verapamil and the only other thing that kind of works for him is a long hot shower. (It really only takes his mind off it until it subsides). Then afterwards he is drained both emotionally and physically not to mention short tempered and sometimes downright nasty. He doesn't want to do anything because he is afraid he will suffer an attack when he is not home and can't jump in the shower. Sometimes I feel resentful towards him that he stays home from work and things may not necessarily get done in the house. I don't know how to handle the guilt that comes along with this. Because he has his good days where he will only get a small headache and he is okay the rest of the day. So on those days, I sort of feel like he should try to go to work or straighten up the house. I try to be understanding because I can't even begin to imagine his pain (and most of the time I do understand) It's just those isolated times that the resentment comes in because it feels like he isn't even trying. And then my guilt comes on full force. I don't know how to handle it. I feel like a total bitch! Just to know there are others out there who are going through the same things is a comfort. Thanks to all of you who have posted and prayers to all of the sufferers and their loved ones! Hang in there!
Staten Island, ny USA
Monday, August 06, 2001 at 21:02:12 (EDT)

Well here's my deal - 28 m, suffering since I was 21, clusters lasting about 4-6 weeks, with 3-5 sessions per day. I've finally got a doc who actually believes in clusters (surprising how many of them are ignorant of this condition even when you tell them what it is, and ask them to read up on it before you visit), and she's aggressively trying to beat these f*ckers with me. Verapamil and Imitrex injections. The Imitrex is superb, but way too expensive to be practical for regular use. I'm looking forward to trying some of the alternate treatments on here, and I'm so relieved to find other sufferers, and FIGHTERS. ~ Chris
Albuquerque, NM USA
Monday, August 06, 2001 at 16:55:04 (EDT)

Wow! This site is amazing! My husband is 45 and suffers from cluster headaches. He has suffered for about 20 years. After a year and a half of no headaches, they are back. It is truely awful to sit by and watch knowing that there is nothing I can do to prevent his pain. To hear someone you love tell you he would rather die than go through such pain just breaks my heart. I am so glad to have found this site. We will visit often. Thank You! Kim and Gene Young, Ormond Beach, Fl
Kim Young
Ormond Beach, Fl USA
Monday, August 06, 2001 at 00:58:38 (EDT)

I can only sit here and cry while I read these posts before me. For years now I thought I was ďaloneĒ, knowing a pain I wouldnít wish on my worst enemy. Being accused of faking by friends and family, considering suicide, all leading to depression. I knew what I had was CH, as my father HAD it also. My first spell was at 13 years old. Now 28, recently married, purchased a house, and returning from a honeymoon in Amsterdam, I haven't had the pain for almost a year now,....but as of one week ago, itís back with a vengeance! Iíve never gone more than a few months without the pain, so my thoughts were I had beat it! If not for my lovely wife, I would be no more. And now I have you all too!! Thank you all for sharing, and I thank you all for this site!! Youíve all given me more strength to look this beast in the eye and spit in its face!! THANK YOU!
Mark E.
Sarasota, Fl. USA
Sunday, August 05, 2001 at 06:28:14 (EDT)

Would like to make contact with other Australian sufferers. Need moral support.
Vic Cottle
Sydney, nsw Australia
Sunday, August 05, 2001 at 03:22:51 (EDT)

Hello. I'm new to this site, but not to clusters. 24yrs.I'm52 now. 7th week into this episode. Last week I thought they were subsiding,but I was wrong. Back to 4 to 10 aday. mostly at night thank god. My work is outside often far away from O tank(railroad trackman). having an attack in this heat amongst folks who cant comprehend adds a new dimension to the goulhish nightmare. Between bouts at home the boredom of my self imposed isolationism is starting to take its toll. Hard labor and clusters is not much of alife.Oh well. so much for the self pity. That only makes things worse. You all know what I'm talking about and I can Take comfort in that. Thanks for the web site and truly wishing relief for all. jeff
jeff chilcott
Elkhart, IN USA
Saturday, August 04, 2001 at 17:47:54 (EDT)

I'll b 46 in August and have had these ******** for 2 months a year since I was 21. During every attack I wonder why my teeth have not fallen out or why my head has not exploded yet or why I haven't pushed my fingers through my neck. How much of this can one take???? It's hard to imagine that we all have almost the same problem and there is NO WAY to prevent them. Having just found this site, I am trying the water thing, ya never know!!! Thanks goes out to my wife who understands the pain and puts up with me during my cycle. Godbless and "heres 2 ya"
winsted, ct USA
Saturday, August 04, 2001 at 16:05:08 (EDT)

I have suffered from CH for the past 14 years. I have been in remission for two years, however last night I had two attacks. I was scared it was just a matter of time before the demon re-surfaced. A Doctor told me years ago that they may mysteriously end as they started, (wishful thinking). I am not a man of many words but I am glad I found this site. I will open up as time goes but for now I am going to end. Look forward to talking with other CLUSTERHEADS soon.
Fort Worth, Tx USA
Saturday, August 04, 2001 at 15:37:03 (EDT)

After 12 years and about 2000 clusters, I've almost learned to deal with the pain. What's it's done to the rest of my life is a different story. I come out of the cave and everybody is gone.
Alex Agran
Orlando, Fl USA
Friday, August 03, 2001 at 22:28:23 (EDT)

I'm 21, I've had clusters since I was about 16. Of course, at the time I didn't know what I had, and I simply called it "head explosion syndrome." I would bury my head at lunchtime in school and just try to will it away. Since that time I have been properly diagnosed (my primary physician hazarded cluster, referred me to a neurologist who misdiagnosed it as ocular migraine, then I found another neurologist who properly confirmed the diagnosis). I found the diagnosis to be the best medicine I've had. I was on (prohibitively expensive) Imitirex for some time, but it didn't help, and I want so badly to not have to take meds. I got sick recently in the middle of a cluster and was drinking abnormal amounts of water to treat my sickness, and I have to say that the headaches did cease while I was drinking all the water, so maybe there is something to the water^3 deal. I'm about to graduate from college and I have this terrible fear that CH is going to ruin my professional career and it has me depressed. I often contemplate suicide during an attack, and nobody seems to understand the desperation and self-blame. It's amazing the options I consider while in a CH, and as soon as it's over I have this feeling of, "You survived, just hang in there - you don't need serious treatment." I want so badly to just wake up one day and never, ever have one again, but I guess the chances of that are pretty slim. I thank all of you for simply existing - it really is somehow comforting to know "I'm not the only one."
Orlando, FL USA
Thursday, August 02, 2001 at 22:48:06 (EDT)

I've been having headaches since I was 30. They were episodic but have turned chronic. getting ready to seek medical treatment for the first time. This site is very informational and helpful, also comforting to know others are having the same problem. thanks
ripley, WV USA
Thursday, August 02, 2001 at 19:32:44 (EDT)

I'm a 35 yr old happily married mom of 3. I've had headaches eversince I was 9. Starting with Migranes. These headaches begane about 10 yrs ago and I'm just now learning about them. I have a new doctor who also suffers from Cluster headaches, so I know he will be helpfull in my treatment. I'm extreemly thankfull for this site and all you guys have already done to help me. Thanks and Godbless, Gizi
Gizi Phelan
Waterford , Ca. USA
Thursday, August 02, 2001 at 18:12:33 (EDT)

I am aged 70 and have been having cluster headaches since I was 41. I had been told that the older you get the less frequent the attacks. I thought that I was really finished with them as I had not had onr for the last six years. It was not to be, last week they started again but I must admit that they are not as long or painful as they were previously. Glad to find your site, I am finding it really interesting. Thank you.
Peter Horwood
London, England
Thursday, August 02, 2001 at 16:36:26 (EDT)

Hi, Nice site! Regards, David
Thursday, August 02, 2001 at 13:25:08 (EDT)

Hello. I'm very grateful to have found this site, and I hope I can help as much as I've been helped by it.
Chris Sigmund
Erie, PA USA
Thursday, August 02, 2001 at 11:08:44 (EDT)

Discovered this side only today and I think it's very usefull
Frans Godfried
Eindhoven, Netherlands
Thursday, August 02, 2001 at 06:30:17 (EDT)

My husband Joe is 34 years old. We have 3 children. He is not one to get headaches often suddenly at 3:00 a.m. He took some advil 2 days later it happened again at 3:00 a.m. 1 day later at 3:00 a.m. he was crying begging me to take him to the E.R. We went they treated him with I.V. pain killers and Imitrex. He was released and at 3:00 a.m. the next morning he was heaving in the bathroom holding his left eye saying "I'm dying, I am going to die." He was admitted to the hospital, saw a neurologist, had an MRI and a cat scan and MRA. He has missed 1 week of work the hospital sent him home with percocet and Imitrex pills. I am afraid because there is nothing I can do for him and there is no real "Fix It" for this monster of headaches. We are praying and walking on egg shells. This is an awful thing to live through. Kelly
kelly Despain
Louisville, KY USA
Wednesday, August 01, 2001 at 19:48:29 (EDT)

I began getting cluster headaches when I was 19 years old. I would get 5 or 6 per day until I was 35 years old. I had 6 or 7 doctors over the years treating me for migraines some telling me the pain was imaginary. As a last hope (before pulling the trigger) I made an appointment with a doctor at the Cleveland Clinic. He told me I was suffering from chronic cluster headaches and they normally do not affect people under the age of 35 (that's why every other doctor missed diagnosed it). He put me on Isoptin for six weeks and the headaches ended for two years than returned like clock work, just like he said they would. He said clusters run in 2 year cycles and last 6-8 weeks when your in an active cycle. I'm 45 now and I have had only 3 cluster headaches in the past ten years. Whenever I'm in an active cycle he puts me on the medication to help prevent them. I thank god every day for finding this guy!!!!
Tony Balamenti
Maple Hts., OH USA
Wednesday, August 01, 2001 at 19:33:12 (EDT)

Oh thank god Im not the only one! For two years now I have been told I suffer with stress - the direct result of these damn head splitting, eye stabbing, face dropping leave me alone to die headaches. Only now, after seing a nurologist (who within 5 minutes of simple questions and a quick physical examination) simply declared he was going to make the pain go away! I have no faith in my general practitioner! On my second day of viprimil and I've had the warning - your about to get one - pain only twice - buth thankfully without the "devil" appearing. Ive only had one apparent remission in the past 18months - and then it only lasted for six weeks. At last I can see a light at the end of the tunnel - I feel like I've got my life back - and now I can stop worrying that i have some evil brain tumor. Incedentally, it was my Nurologist who pointed me to this site - so even the professionals must rate it!!!! Anyone in Yorkshire/North Lincolnshire - feel free to srop me a line! Regards and best wishes to everone, and thankyou so much for this web site. Phil.
Hull (ish), England
Wednesday, August 01, 2001 at 05:31:40 (EDT)

Hello Friends, I'm so happy. Yesterday I found this site and a Dutch side about CH. Best thing is that my wonderful wife can get some support from it and can chat with other wifes and family members of CH's. Beside that I feel now much stronger because I know I'm not alone and I can talk with other sufferers. Go on with this very necessary site. Love, Joop
Joop Rijsdijk
Nuenen, NB Netherlands
Wednesday, August 01, 2001 at 03:44:21 (EDT)

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