Sign our cluster headache guest book!

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-December 2006. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

I am 21 and have had cluster headaches for about 5 years now, coming once a year for about 6 weeks at a time, one or two a day. It is amazing to read the testimonials and see that other people experience the same thing I do. I'm just glad I am in college now and can walk out of my classes when they hit me at 8:30 every morning, in high school my teachers weren't so understanding. Imitrex has seemed to help, but it only pushes the headache back until it waers off (i.e. the heaswache will return at 2:00), but at least it helps. I hope everyone can find their "miracle method" of getting rid of these and one day a cure will be found...
Druit Gremillion <dgremi2@lsu.edu>
Baton Rouge, LA USA

hey all i haven't had Ch's for long about 5 years now but i have always had a chronic case right now i am questioning the point of it all i have no one to talk to about it and writing it down just doesn't seem to do it justice. i wish i could say more and make it seem meaningfull but as this will more than likley be my one and only comment i just want to say hope u guys fight it better then i did later.
Michael <siro_666@hotmail.com>
Melbourne, Vic Australia

I had suffered from clusters for almost 6 yrs. straight. I got a welcomed reprieve for a little more than a year, then suddenly here we go again. It's hard to believe you can actually forget this kind of pain!!! I can only hope that this time I will be an episodic sufferer. Thanks for being here
Kim
USA

Am a Ch sufferer for 37 years with attacks occuring every 2-3 years lasting about 3 months,except for the last attack 2 1/2 years ago that lasted 5months. Have found Imitrex SQ a g-dsend. Have tried all the known and anecdotel prophylactic meds and techniques without response and/or only side effects.Often have 2-5 per day, with 2 of those at night.Respond to 3mg. Recently diagnosed as having a retinal disorder of unknown cause with loss of peripheral vision and adaption when going from light to dark. Imitrex is taken up by Melanin in the retina and is known to cause constriction of blood vessels with reports of temporary or permanent blindness. The latter related to recent use. Has any other CH sufferer who uses Imitrex been diagnosed as having a retinal rod/cone dystrophy of unknown cause?
Stan <dwnundr2@hotmail.com>
NJ USA

12.22.06:My husband is a long time sufferer of cluster headaches. He thankfully skipped last year, but is in a series now of 22 days. This is the longest he's ever gone, suffering 2/day. Is anyone from IA or the mid-west where the weather has stayed warm & moist? Usually by now we have cold weather. We are wondering if something like corn mold or something that hasn't 'frozen off' yet like it normally would is what is triggering the headaches. Nothing else in his life is different. The series usually starts in late October/early November just before our weather turns cold & freezes.We feel so desperate at this point...I know there are lots of cluster headache sufferers out there, but are there any from our area that might be thinking a long the lines we are????? Thanks for any input....C
C Cameron <mamacameron@hotmail.com>
Alta, IA USA

Thanks for this site... I have had CLUSTERS for over 20 years. At first i took all the MEDS. , but now I just try to deal with the pain. I hope someday we find out just what causes these beast...My best goes out to all !!!!! Happy Holidays
Will <wgodfrey@walkerautomotive.com>
ALEXANDRIA, La. USA

Wow reading some of the other emails brought tears to my eyes especially reading that their spouses feel so helpless as what happens when my clusters come back. I havent had them for 2 years almost to the day but when they come they wallop a punch. It is kind of weird this time though, as this is the first time that i knew that the cluster came back without actually getting a headache until later that evening. The best way to describe mine is as the worst brain freeze behind my right eye that doesnt go away for 1 to 3 hours 2 to 3 times a day and usually always between 1:00am and 3:00am. I try to maintain myself during them by pacing the floors in the basement , walking outside, or banging the right side of my forehead against the cold basement poles and just keep asking why, the pain is so severe that just when i think that they are at their worst and i can not handle it any longer the pain subsides slowly and i feel like i just got the shit kicked out of me but am glad that it is over..........FOR NOW!!!!!! I dont have any enemies but if i did i wouldnt wish this on any of them. I am sorry to see so many painful messages from other sufferers but i am glad that i found this web site.....thank you
roger wortman <rwortman@brightonford.com>
BRIGHTON, mi USA

Its been a year and they're back. Not as bad as before thought. I seem to get some relief from going to a chiropractor. I've had these nasty things for 6 years now and dread every horrid, painful moment. Only a few people I know realize how painful they are. They put up with my moaning and banging my head against the wall. Those 20 minutes of the CH's leaves me exhausted. Other things that seem to help are coffee, ice in a bag placed directly on the head. My best to all of you.
Benny <bennystpete@yahoo.com>
St. Petersburg, FL USA

This is site is 4 me i thought i was alone in all this no 1 ever understood my pain not even my wife it sucks that other people have 2 deal with this like i am but im glad your here..... makes me a little less crazy
Charlie g <charliegray@charter.net>
apple valley, mn USA

Thank you so much for this site it has been so helpful since I found it a year ago not only with information but support, I do not feel alone. I appreciate the "letter to friends" letter to help people understand what I'm going thru. Also the link to local doctors helped me find a doctor near me who understands CH. This is a wonderful source of support and information.
bradboy <mtdewguy@hotmail.com>
Hollywood, FL USA

Hi, My name is Rudy and my wife gretchen found your website, I am 47 years old and suffered from clusters for 20 years. I went to a chiropracter about 8 years ago after a work injury and after a couple of months of adjustments and accupuncture they stopped. Unfortunately after 7 years they have started again. They came back in November. If they follow the old cycles they will leave sometime in early spring. We thought they were gone for good. Guess not at least this time I found your web site and other info. Rudy
rudy cacek <cacek@sbcglobal.net>
Wichita, ks USA

I am glad I found this site. I have had migraines my entire life, however, 5 days ago I had a headache that was a complete shock. I went through a nightmare for hours on end, drank beer trying to relieve it pinching and hitting myself to move the pain, etc. then the next morning ended up in the emergency room fully believing I had a brain tumor or was going to have emergency sinus surgery or SOMETHING! My whole right side of my face and back of my neck were pounding, no relief!! My eye was bloodshot red and watering my nose was running, I had a toothache, earache, sinus ache, etc. After a CT scan the ER Dr. told me I had what is called a cluster headache??? To me it did not sound as serious as it felt. I followed up with a MD and he said they are rare, wanted to know if I wanted to see a Neurologist, I said no, thinking I can handle it with the script he gave me of Midrin for mild (ha ha..mild??), then Hydro/APAP 7.5/650mg...well it's not working, I am scared and hurting and from the sounds of this board, what will the neuro give me to help, most people seem to me are still hurting? How long do they last (days) how many years? What am I in for????
PBoggan <penny.boggan@us.army.mil>
Brandon, MS USA

What a great site. I have been a CH surrerer for 30 years. For a long time I thought I was the only one. I have not had an attack since I quit smoking 18 months ago. I don't really know if they are related but I do know I don't miss the CH attacks. It's wonderful to have brothers in arms. Bruce
Bruce <Ojibwafly@sbcglobal.net>
Mason, MI USA

My headaches are so bad sometimes i just wanna get a gun and shoot myself the pain is so intense its just nothing i can explain im young and im a senior in highschool and i experience these every day and its miserable i just wish someone would come up with a cure for this there are so many people that cant live there lives to the fullest extent because of the pain i like that there is a site dedicated to cluster headaches because alot of people dont realize how much this effects the
brittany
knoxville , tn USA

i am in so much pain right now. which many of you can relate. i am glad i found this site. my knowledge and understanding of this terrorable pain has helped me. thx to all please stay in there. sincerly, one of your fellow GC sufferers
Gilbert <gpgonzales@hotmail.com>
san jose , ca USA

Hi there, I'll start by saying that my heart goes out to all of you cluster headache sufferers. I have had them for about ten years now but they have really taken hold over the past three years. This year was the first year that nothing was working and the episode lasted much longer than usual. Eventually I was put on Depakote which did nothing for me. Not only did it not work but it made me very depressed and angry. In fact, the headaches became far worse and more frequent while I was taking this drug. It was a nightmare. I decided to switch doctors because I needed a second opinion. My new doctor prescribed Amiltriptyline. This drug saved my life. We started at 20 mg but this wasn't enough. We ended up at 50mg and I have been headache free for 2 weeks. This is the longest I have gone since August. I know that not everything works for everyone but I highly recommend you give this drug a try. I'll be hopefully going off the drug in January but even if I have to take it forever, it has truly changed my life. The only side effect is dry mouth which is well worth it. Best of luck, everyone. I keep you all in my thoughts. Julie
Julie <julie2477@hotmail.com>
New York, NY USA

I started CH's when I was about 16 and had them for about one month every 15 months ish. I had my wisdom teeth out when I was 27 because they were impacted on my molars (growing forward). I did this about a month after a CH episode, mainly because I thought it may help. A few days afer the tooth extraction I had another CH episode, out of timing with the usual cycle. I have never had another one since (12 years). I am absolutely convinced that the headaches were caused by pressure from my teeth in my skull and that the final headache after their removal was due to my skull realligning. May be worth looking into if you have weird teeth. I am not a dentist. Good luck.
Nalin <nalinbalin@yahoo.co.uk>
Southampton, UK

I fell and hit my head when there was a partial collapse of my stairwell. Since then I have ahad a constant headache, light sensitivity, some emotional upas and downs, some cognitive problems and memory problems. The cognitive and memory problems have healed to some degree. My most pressing problem is light and sound sensitivity, which causes a migraine, which causes small seizures and severe pain. Any ideas o how to lessen light sensitivity? I wear dark glasses all of the time, including when I drive at night. I am still able to work, but barely. I work, eat, sleep, do things to keep myself going and repeat the cycle again. Thanks.
Mr. Terry Haines <terryinpontiac@yahoo.com>
Pontiac, MI USA

Welcome everyone! I'm happy that you found this site. There is more information and support here for people with cluster headaches than anywhere in the world. Check out the links on the left-take the cluster quiz if you're not sure about you headaches, and take your time. Again, welcome!
kathy <skcopelin@sbcglobal.net>
redding, ca USA

My God, where do I start!? First, I'm a 47 yr old male who's suffered with episodal CH's since I was 19 (ALWAYS 6 months, fall-spring).A week ago, HE returned after 2yrs.( and me without my O2!!!). I started looking up info on them when I was first diagnosed in late 80's, with little or no real feeling of support and understanding. Today, after a very rare episode (being that it was around noon, and , for the first time, the pain actually shifted sides! 8+ on the left-10+ on the right...go figure! lol) I found this site. I cried for a long while, reading the things I have endured, written by people just like me, not to mention what my (now ex) wife went through, unable to help in any way. I have so much I want to share, and it seems strange, because I wouldnt be saying anything that any of you have ever heard or felt. But, I so look foward to meeting all of you, my new found family. I have tried to register, but I'm having the "code" problem and know I'll straigten that out soon. Until then, anyone wanting to compare notes please feel free to contact me using my e-mail. By the way...a clusterhead friend of mine calls a group of CH'rs a clusterf*@k! LOL. I love you all!
Michael <macbolen@comcast.net>
Lansing, MI USA

hi i am new to this site and new to these devlish pains. i was diagnosed 3 days ago but have been suffering for about 2 months im just wondering if anyone out there can tell me will i suffer from this for the rest of my life and what is the best thing to get rid of the pain. many thanks
stephen reynolds <stephenreynolds23@hotmail.com>
cambridge, uk

So good to find a site that has given me plenty of information on CH, which has for the past 6 weeks of hell come into my life, my doctor a great man diagnosed it straight away, and I take maxi melt tablets which have giving me fantastic relief, I just hope and prayer they go away steve
Steve Mowday <steve900@btinternet.com>
Norwich, UK

i need help please with my clusters im begging thanks larry
larry bowman <redryder00@hotmail.com>
rensselaer, ind USA

I am not new to this site, but it has been a long time (1999). Since then, I have moved from Amarillo, TX to Humble, TX. I am 68, and the clusters started in my late 20s. I keep thinking I'll outgrow these things, but I guess they will be part of me all of my life. This time, they are not as long-lasting or painful as they have been in the past (but it is still early in the seige). Can't say I'm glad to be back, but it is consoling to know there is a place were people understand.
Barbara <wayne.herr@gte.net>
Humble, TX USA

Hello to Everyone out there. I have just finally been diagnosed with a rare cluster disorder of Chronic Paroxysmal Hemicrania. I have had Classic Migraines with Aura since I was a young child and that was all that any doctor would consider. I finally was admitted to the hospital twice in the last 6 weeks for my headaches/migraines. Finally someone listened to me!! I am now being treated for both CPH and Migraines. Although, I worry about what the meds are doing to my body, I must get this horrible pain under control!! I am hoping to find others out there that have CPH that can talk with me about how their condition is going and what I can expect in the future. I am so glad to have found this site!! Thanks for everything!
Wanda vonThun <emaraldeyes4joel@yahoo.com>
Moberly, MO USA

Hello - I am from Brisbane, Australia. I have suffered from migraine and cluster headaches for all of my life. Clusters started (from memory) in my mid-late teens. I get episodes of about 3 - 6 months every 3 or 4 years. Like everyone else I have been misdiagnosed, treated as a drug addict by doctors, pushed, prodded and poked with little or no resolution. My family suffers from migraine so it was seen as "a little migraine". Last episode I used O2 therapy with good results but getting medical O2 is difficult. My wife is my only real supporter and has learned the hard way what I can be like with CH. But we are both learning so much more than we ever have by looking through this site (and OUCH). I have even printed stuff off OUCH and here to give to people who say "there must be a cure" or "there must be a trigger you are missing". Now I intend to wander around with my printouts and give them to all of those people! Thanks to the moderators and custodians of this site (and OUCH) for giving me hope, allowing me to know I am not alone (and that I am not crazy for thinking it would be so easy to permanently end the pain!). I am a 38 year old male, non drinker, smoker (but stopping for 4 years didn't help...). One of the most difficult things is the lack of knowledge about this in Australia and the lack (apparently) of decent abortive drugs. I think I can get imigran (imitrex I think) for like $10 per tablet or nasal spray but haven't heard of the injector. Sorry to put so much here but haven't registered yet (will when I get home tonight...)
Randall Swain
Australia

HI all....I am sorry to see you are suffering, but you HAVE found the doorway to understanding!! Please visit us at the Msg Board, ask questions, get answers! IF you are on the West Coast, PLEASE take a look at the section about Meet N Greets, coz, in Jan2007, there will be a group meeeting to visit and talk about the Beast and other lessz important things..... Meeting a fellow sufferer is a life changing event!!! Wishing you all PF, Cathi
Cathi <piercesathome@yahoo.com>
Portland, OR USA

I'm baaaack! Well, I'm heading into my second cycle this year. Increasing shadows are pretty much the tell-tale sign that they're back, I wasn't expecting to see a new cycle so soon. Back in April I tried Verapamil with great results, hoping it works as well this time around. I avoid this website whenever I'm between cycles, but whenever they reappear, this community never fails to welcome me back with open arms. Here's to another lovely round!
Mandy
NC USA

My husband Phil, a devoted member of this site, suffered a fatal arythmia last Monday. Called 911 and they worked on him at home, in the rig and for over an hour in the ER. They put him on life support and told us there was little chance of his recovering. I prayed all night. I knew he was with God and NOT IN PAIN. He did pull through and is off life support. Real sick and traumatized and confused. He knows he died, three times actually. He is such a miracle, I am hoping that through some miracle, they may be able to help him find some relief from his pain. He's a chronic cluster sufferer and so brave. I have so much respect for all of you sufferers and so much compassion and empathy for those of us who love you. I'm praying for all of us. Laura
laura <lauramadlyn@comcast.net>
Red Bank, NJ USA

Greetings Brothers and Sisters, I always check in from time to time just to say hello, and to offer support to all. I have been Cluster free for 11 years. I'm 49 and my Clusters started when I was about 18 years old. Whe they first started, they would last about 10-15 min.apiece. At the worst, 3-4 a day for six months straight. Been through the mill, about 10 different Doctors, about 100 different meds, with 1000 side effects. Hooked on lots of pain meds, you name it, I took it! Almost OD'd on Demerol. My pain was a glowing red hot ice pick that was being thrust into my left eye. And it felt like if I could take my eye out, it would all pour out. Sweating, I'd be outside in January in just gym shorts pacing, trying to "get away" from the pain at 3am! Aaarrrgh, brings back bad memories. Made it to Chicago, to see the good Doctor, the man who saved my life. The absolute best thing about going to Chicago was seeing people curled up in a ball in the corner of their hospital room, or pacing up and down the hallway clutching the side of their head. That WAS ME! I had never saw anyone look the way I did. I wasn't ALONE! I wasn't crazy! Because up till that point I thought, and for the most part was right, everyone doubted me and my pain. People, supervisors in work, teamates on sports teams, even some Doctors. You know, I could go on and on, but please people, know that you are not alone. And with the right outlook and right meds, you can have a productive life. I know, I know if someone had told me this 23 years ago, I would have tried to hit them in the head with a pill bottle! But I am living proof, it can happen. Don't give up, never give up. May peace touch you all.
John Callen <joncall@aol.com>
Philadelphia, Pa. USA

Hello and welcome. You have found the best place to be if you suffer from (or support a sufferer) of CH. On the left is a link to the message boards. There are people there who can offer much support and information. Join us! pain free wishes, nani
Anita
Los Lunas, NM USA

I dont know, my doctor doesnt know, all I can describe is the exruciating symptoms. Took many tests. noone found anything and yet this pain has lasted over 1 month. I tried going to bed early, 8pm only to wake up within one or two hours with excrutiating pain on the right side of my head. I felt the tears were filled with blood, yet I was amazed there was none. Then I decided I was having a stroke by aneurysm. But the cat scans are negatve. My doctor now thinks im drug seeking. YES I AM. I would do anything to stop this pain. HELP
Kathie <sissy4725@bellsouth.net>
jacksonville, FL USA

hello,iam a suffer of cluster headaches my neuroolgist said only 1 percent of women have them i just happen to be her im marride with a 10 year old daughter and i feel so depressed when im in so much pain because im a homemaker and they are my life and the clusters control my days and nights when they hit nothing helps the pain any advice from anyone who has found any methods or medicins that helps at all!!!! thank you and god bless ...seba
seba dalton <daltonbak1@aol.com>
bakersfield, calif USA

I just posted the previous rant and apologize for my run off at the mouth. Thank you for this web site...I wept when I found it. Especially unnerving are the accounts of our loved ones who are helpless. I pray for us all for a better day when the monster is tamed in a workable way for us all. I probably wouldn't be here without Imitrex Stat Dose. More later, Love to you all.
Bob Carleson <carlesonra@hotmail.com>
Arroyo Grande, Ca USA

the Monster has been with me every three years since 1984. This first doctor's office I entered that knew what I was talking about when I said Cluster Headache is a pain specialty clinic in San Luis Obispo, Ca. They do nerve blocking procedures that the insurance may or may not pay for. BTW my insurance has iformed me I do not have a medical condition. Anyway...ENOUGH. I HAVE HAD MY BROKEN BONES AND ALL THAT AND IT IS A CAKE WALK COMPARED TO A CH. THIS COUNTRY'S MEDICAL SYSTEM IS COMMITTED BY IT'S OWN OATH TO END SUFFERING AND HERE WE CONTINUE TO HURT AND HURT BAD ALONG WITH OUR FAMILIES WHO HAVE THE PRIVILEDGE OF WATCHING THEIR LOVED ONE WRITH AND SCREAM. I AM THROUGH MY INS COMPANY'S APPEAL PROCESS NEGATIVELY AND AM WORKING WITH THE STATE NOW TO HELP ME. GIVE ME A 45 DAY RESERVE OF STATDOSE AND THAT IS ALL I ASK. EVEN THEN I ONLY NEED IT EVERY THREE YEARS...WHAT'S THE F--- IS THE PROBLEM HERE!!!! Quietly twisting the wheels after my second nerve block stopped it. I will not go away, I will continue to bother you until you can say that CH is a madical problem worthy of fast effective treatment without a lot of questions. These people are not uncaring...they just don't know.
Bob Carleson <carlesonra@hotmail.com>
Arroyo Grande, Ca USA

hi, I have had cluster headaches since I was Junior in college. I have 6-8 weeks with 2-3 years remission. I believe I have just finished a cycle, (whew), has been a tough year all around. I use 02, relpax and imitrex injectable,ice on back of neck. However, Saturday night 10 days ago, one got ahead of me, I was away from home (no 02) and I had to endure a 10 for an hour and forty minutes. So my question is even though you have tools or weapons (drugs, 02,ice,etc) don't you still feel like having CH is liking having your own pet pit bull trained to attack only you, kept in cage in the kitchen, and that sometimes you can't,won't be able to subdue it and it will just get out and ravage you and there won't be anything you will be able to do about it but endure it? And doesn't that suck and how do you deal with that thought?
Deb Viani <Homebypollard@aol.com>
Wellsville, PA USA

Crazy how hopeful we can be. Was chronic for 9 years, all the Drs, neuros, chiros, accupuncture, the witch Drs. the meds, the trex, O2, then a break... they go away and you think your done. 9 mths later the disappointment, they're back ok, you can live with episodes, anything is better than 4 a days, those kip 10's that wake you @ 2am. A few months each year seemed like a blessing but then a few months stretches out and before you know it your chronic again. Bummer for me to shake hands with this again. I feel all your pain... and i pray for all of you.
Allen Stieglitz <Allens8@cox.net>
Scottsdale, AZ USA

Well they are back,,upped my verapimal...checked to see if I have enough imitrex...my HAs are not as bad as they used be ..guess am getting older....anyone get ringing in the ears all the time, with and without the headaches...think it may be a new side effect due to verapimal? or am i just getting older...and the ringing is just that....gets worse as the day goes on
mike <mikezav1@hotmail.com>
USA

I thought they were gone...Hanen't had an attack in 13-14 years...Guess what!....There back with a vengence......Here we go again....I've found...at lest with the VA doctors, they really don't have a clue....
James McGrath <jimmc51@gmail.com>
Allentown, Pa. USA

I have recently been diagnosed with CH. I have never been so happy. I have been dealing with the pain for over 10 years, with no medecation, and no one knowing what was wrong with me. I had even seen a neurologist. The problem was as soon as the doctors started realizing there was something to look at, the symptoms would disappear as suddenly as they had appeared. I had been told by other doctors that I had migraines, but i was still convinced I was dying. The doctors didn't ask me the right questions, or didn't "listen" to my answers. Does the light bother you while your having your "headaches"....well hell yeah, everything bothers you. Do you want to be left alone? Of course, I don't want anyone else listening to me moan or cry, or kicking my legs. The doctor asks if I pace the halls? Well no, I thought I had migranes, and was trying to stay in a dark room all alone to "cope" with the pain. So I had been trying to do all I could with the advice given for migrane sufferers. When my new neurologist diagnosed me with cluster headache, he had no pamphlet for me to read, he said for every 50 migrane patient he only sees one CH. I am a female to top that. I came home and looked up the web site he recommend for information, and could not believe my symptoms written in black and white, and I thought no one understood. After reading some of the other testimonials, I feel very fortunate. My clusters come once a year, for about two months, then gone until next year. I appreciate all the advice offered on this site, and plan to try some of the "tricks" next time around! They eye thing, no one understands, you people do!!!! Thanks.
Jennifer Losee <daisygirl729@sbcglobal.net>
Indianapolis, IN USA

My husband will be thirty soon and has been suffering from CHs for ten years. We've been together for almost seven of those years and every cluster headache I have witnessed has broken my heart. It kills me that I can't help him. When he's swearing, screaming,and crying like a man posessed, all I can do, is pray. And I do. Continuously until it goes away. He's in a cycle right now and just started the prednisone today. I hope he can actually sleep tonight. I have shown him this site and I hope he will come here and get information and support. This is a really great place from what I've seen so far and I like that loved-ones of sufferers are just as welcome. Thank you.
Elizabeth
Hamilton, ON Canada

After 10 years, different doctors treating me for a sinus infection with antibiotics, ofcourse to no avail, one listened to me, performed a CAT Scan (to prove that no sinus infection existed), and thinks its clusters...
John Eilers <jeilers@berkcom.com>
Menlo Park, CA USA

It is such a relief to finally be able to see that there are others out there that understand. I can try to talk to family or coworkers and they nod their heads but I know they really don't understand. Most of my coworkers can tell when I've been up most of the night with a big 1 but they don't really understand just how truly how bad it is. Since I've been on Topamax it's seemed to helped a lot, not stopped them completely and the side effects are bad. But not as bad as the headaches. And if I say something to the Dr. he just gives me another prescription for the side effect. What a never ending circle. I can't function with the headaches so what other options are there?????
Charlotte <Charley1217@aol.com>
McLoud, OK USA

Thanks for the site. I had been pain free for two years until last night. I had forgotten (tried to) how bad.
david <eumenides@hotmail.co.uk>
rochdale, uk

i am so glad i found this website, here i was thinking ive been having alot of sinus infections...and all along its been this! i have every symptoms listed...started about 2 yrs ago, seems to start up in august/september and continue on and off through the winter, fine through summer. i havent been doctor diagnosed...ive been to the doctor NUMEROUS times with the same pain and symptoms to be told i have a sinus infection and given antibiotics...which is my case right now, i had an episode 2 weeks ago tuesday early morning, went to the doctor, said i had a dental infection..ugh...took that antibiotic, didnt help of course...went back to a different doctor to be told i have a sinus infection just took my last pill for that today actually...i had a beast early this morning woke me out of a sound sleep at 1am, then it was gone at 4am but oh my god i wanted to die the pain hurts sooooo much! id rather be in labor with no pain meds then have this! (and ive had 3 kids) i am hoping that i can get doctor diagnosed soon and get some relief! thats all i want for Christmas this year! i have tried to register for the message board but am unable to because the "code" isnt showing and i need the code to register what a bummer! its a good feeling to know im not suffering alone but also sucks that sooo many people have to deal with this!
Sheila <wildways76@comcast.net>
MN USA

It's been two years since my last cycle of attacks, they have just started up last week. The worst thing about cluster headaches is even when the pain is not there my anxiety level is way up because I know they will be back. Well........ maybe the anxiety is the second worst thing because the shear pain is definately the worst.
Jason <jmilling@stclaircollege.ca>
Windsor, Ont canada

wow!!!!! what a great site im in the middle of my cycle and im going to see a new nureo doctor tomarrow.i feel like i could tell them more about ch's then they can tell me.i am a lucky guy tho, i have a endless suply of imatrex. i still only use no more than 4-5 in a 24 hr period.i have had these bouts for about 30yrs now.it has been about 3yrs since my last cycle. i thought the older you got the less chance of the ch's you got? just turned 50 and still dealing with these damn things.i plan to use this site daily for help and support so you will hear alot from THE STEELMAN
matthew fisher <fishermetalcraft@comcast.com>
boring, or USA

twenty years i have suffererd its nice to finaly see other people are aware as i thought i was alone............
rik williams <rikwilliams@msn.com>
worthing, uk

Good evening....I am doing some fiction writing and my main character suffers from cluster headaches. I was researching it awhile back and was bounced all over the Net. It was not until tonight that I found your website and learned a great deal of this condition. I do suffer from headaches, but not as severe as some of the sufferers who have shared on this site. My heart goes out to both the sufferers and their families. God give you strengh.
R. Lee
Canada

In pain now for 48 days!!!
Raul Ramos <Raulr@firstcash.com>
Portland, Texas USA

OMG here it comes... the shadows are thickening, the beast is warming up, he wants to dance tonight... a single tear starts it's way down mij face, paving the path for many more... I get myself a large glass of water, take off my sweater and my socks, but I know, resistance is futile... the only way of surviving is knowing that it will end, but it's gonna be three long hours from here on... untill it sleeps... just hang in there... cu soon
Ton <winshots@hotmail.com>
winshoten, the Netherlands

Hi, my name is Lisa although i do not suffer from cluster headaches myself, I feel like I do because my husband does. It breaks my heart everytime he gets one because as much as I want to help him, I know there is nothing I can do to make the pain go away. I've been trying to get as much information as I can on them so I can get a better understanding of it. This site seems to be a good place to start. I am trying to register so I can talk with people about it, but I'm having trouble. If there is anyone out there who can help me with it, I would greatly appriciate it. It seems like it would help me to have more people to talk to when i feel so helpless. Feel free to e-mail me with any help with the site you can give. Thanks, and to all of of you who are suffering, I hope you have a pain free day!!!...............Lisa
LISA <BUDBICH@SBCGLOBAL.NET>
COAL CITY , IL USA

This has to be the most dreaded nightmare anyone can have. I experienced my first attack four years ago. it was in October 2002. I remember feeling nausiated, lightheaded and then "SLAM" as if someone hit me with a bat across my head. My eye felt as if it popped out of my eyesocket,especially with the amount of tears pouring out of my eye. the pain was like nothing i have ever experienced, unable to speak, yell, i really thought this is it. It is over. my wife rushed me to the hospital. The triage nurse didnt even stop me, she immediately rushed me into a darken room. My entire clothes was soaked with prespiration. Next, total silence, the E.R. Doc shot me up with some imirtex i.m. Well, needless to say this episode lasted 14 days straight. I told the neurologist that if i had one more attack, i was going to shoot myself. Fortunately, it stopped that 14th night. But, here we are in 2006. Guess what, there back!!!!!! I'm on my 8th day straight with this nightmare again. Its, as if you are cursed and alone with only your strength it takes out of you to face this demon that reappears every night at the same time. Frankly, I'm afraid, tired, and fed up with this. I know I'll eventually win this battle. My doctor Rx me 30tabs, Imitrex 50mg. guess what. It cost me $701.00 to fill this Rx. My company just changed providers and I'm in limbo without Ins until Nov. If this isn't perfect timing. I tell you all keep the faith. Hopefully, these amazing scientist will discovery a cure to end this devasting illness once and for all. Keep the faith.
sergio alvarez <srg_lvrz@yahoo.com>
torrance, ca USA

I thought i was alone,thank God im not,Suffered for years with cluster headaches they started when i was a teenager now in my early 30's still going crazy with the pain,my worst ever episode or punishment lasted for about 6 months started to take painkillers like there was no tomorrow ,had medication to slow my heart beat,didnt work,medication used for depression? guess what? didnt work either had a brain scan and nothing was found,i was at my wits end no one understood they thought i was crazy,wouldnt go out in the day ,the sunlight made it worse,strong odours like certain perfumes,bleach, air fresheners well anything used to help trigger it off. I used to savour the day when i didnt wake up with my head hurting ,a day with no pain was like a day in the state of euphoria i wasnt moody i could think straight, daylight wasnt a problem i could feel at complete ease,i could be myself again. Years have passed and i have had small bouts of headaches but now its October and i feel scared because i feel that tell tale sign of pain and swelling to my left eye just dreading the full blown cluster to surface its ugly head. i will say it again i thank God that i've found an insight into what has nearly pushed me over the edge at times. Alhamdilallah
Hamzah Romaine <romaine_1@hotmail.com>
Birmingham, England

So I guess it's been close to 10 years now that i've been suffering these 'cluster headaches', the problem is that till I found your website (Today) I didn't know it had a name. My family thinks I'm lying and faking it. My goodness. I cry because I suffer with this and didn't know what it was. Now I do and i'm so glad I happened on your site. I've searched before but some how kept missing the key words I needed to know. 'Brain Freeze' on 'Right Side' is what worked in Google. Yeah, i'm not alone! Sorry :( The only thing is this, most of the traits associated with cluster headaches match up, but one doesn't and that kind of throws me. It's the amount of time my headaches last. They only last about 30 seconds (normaly) but the other few days its been a few minutes (that's why I started looking it up again). I'm able to stop them as I tried to figure out why is it I want to move around. I figured it had something to do with heart rate vs. blood pressure causing the tissue in the head to swell. So I would simply just tighten my muscles in my arms (extreme pushup), butt (cracking walnuts) and legs (remember to keep breathing) This causes the blood to flow into the muscle area taking it away from the pressure in the head (that's my theory anyway). It works for me so maybe I don't have what you all have. But there is no other discription that comes closer than 'Cluster Headaches'. I like the Waterx3 idea and oxygen. I assume it helps blood flow some how. Well i'm glad I found clusterheadaches.com I'll be checking in from time to time.
Randy Pippin <randypippin@hotmail.com>
Andover, OH USA

I don't have really much to add to all the heart wrenching postings I've read here on CH.Com other than to say bless this site for what it is doing. I am 60 years old, and while I have suffered from migraine headaches several times or more a year throughout my life, I had my first indication of what a cluster headache might be like in the spring of 2005 when I had a headache that made my migraines look like child's play and that felt like my head was going to explode. It forced me to go to the emergency room where they eventually, after much embarrassing rocking, screaming, moaning and pleading by me for them to "do something" they shot me full of dilaudid, more I think, in the hope of shutting me up than anything else. My doctor prescribed prednisone. It seemed to help and I only had that one headache. Then in May of 2006 I had two headaches of the same indescrible and intense pain two days in a row, sending me to the emergency room both times to be shot up with dilaudid. They hospitalized me with a 102 fever the second day and did an MRI which was negative. My doctor prescribed prednisone and topamax. I did not have another headbuster, but felt like I had an alien head upon my body, just generally weird, with a constant low grade headache that felt like it was being suppressed and ready to burst forth at any time. I took one vicodin each day during this period and it further suppressed the weird feelings and background headache so that I could go about my business. Note- Vicodin is addicting and should be used carefully. The weird feelings and background headache did not subside and my GP referred me to a neurologist who specialises in headaches. He prescribed Depacote which eliminated the generally weird, alien head feelings and also suppressed the background headaches,but made me feel extremely tired in the afternoons with leaden legs. To counteract the side affects of depacote, he added Lyrica to the mix. The ratio of Lyrica to Depacote also had to be adjusted as too much of the Lyrica, in my case, caused too much of an uncontrolled euphoria and hyperactivity. It's been about 8 additional weeks and I seem to be slowly improving. The background headaches have been slowly dissipating and when I feel they are trying to break through a snort of Migranal seems to be effective. I offer this anecdotal information for whatever it is worth. I have no idea what my future cluster headache history may be, but after reading some of your posting it is with no little sense of trepidation. God, I hope all of you can find some sort of relief.
Skip Lau <Pacstove@hotmail.com>
Santa Barbara, Ca. USA

Hi Everyone, My story is not unlike yours. I started having clusters at 25 and was mis diagnosed for years. They said it was sinus, migraines, absessed teeth, you name it. I've missed work, hell I went to my own wedding carrying an imitrex injection. Even after proper diagnosis it has still been hard to treat and deal with. Thankfully if I have to have this I am episodic so far. Now I'm on verapamil, topomax, and melatonin when I'm cluster free to prevent attacks. When I'm having attacks the verapamil level is raised along with prednisone and I use oxygen first and then imitrex to break attacks. I feel for all of us because this truly sucks. It's good to know I'm not alone but then again I don't wish this on my worst enemy. I hope some day soon a drug free relief can come for all of us. Until then I wish you all as many sleep filled nights as possible.
Lynda Flores <skulls35@ili.net>
Trenton, Mi USA

Its good to find people who understand what I go through. Most people have no idea what it means to have a cluster headache and this has caused me alot of trouble over the years. I'm self employed and most people don't or won't understand a project delay because of a "headache". Usually I'm able to work thru the early stages of a cluster. Once the cluster has settled in and the pain reaches it's peak I'm unable to leave the house on most days. Thanks for the information that you all share on this site and the comfort of people who care and understand. Sincerly, Rog Samuelson
Roger Samuelson <Rosam10@madbbs.com>
Bemus Point, NY USA

Hi Guys Im back again!! My last visit was approx 3 years ago and since my attacks come in 2 year cycles i stupidly thought i had escaped this time round. In 3 years ive had sooooo much happen! I got married, got Pneumonia whilst 7 months pregnant and nearly lost my life. Then had a beautiful baby, only to then have a suspected blood clot and nearly die again! So after picking myself up from all that I decided to start up my internet wedding business and life was going great! Then it came again. I instantly knew what it was and soon got into routine! Got my Dothiepin from the doc but guess what? they went on for 5 days and then? GONE!! I say that with a certain amount of doubt. I have never had an attact last such a short time so i dont want to jinx myself but hey! My new business is just getting going and i really love what i do and really could no way do it if my attacks came back! I loved this site when i found it 3 years ago and its the first place i came back to. I feel your pain everyone and keep trying to beat this curse xxx Andrea
Andrea Watts <crystalsandsilk@yahoo.co.uk>
uk

Have suffered from Cluster Headaches every 2-3 years (started 6 years ago and starts only in the month of Septemebr every 2-3 years), but luckily Indian Herbal medicine has controlled it within 3 days.The course lasts for a whole month so that it is totally cured Any person interested can contact me and I will be more than happy to assist in all possible ways
Pankaj <gctauto@gol.com>
Tokyo, JAPAN

This is a response to Blaine from BC. You didn't leave an address for us to respond. Please introduce yourself on the message board. You will find a lot of caring people who can help. If you don't want to address it on a public forum email me. Jerry
Jerry Callison <smrerlj@peoplepc.com>
Aurora, IL USA

I'm on two years. Previously diagnosed as "severe sinus headaches" behind my right eye, but CT was negative. I get pretty bad residual pains lasting for a long time afterwards, and the Depakote has reduced or eliminated those, but the sharp pains are still soooooo severe. I have the "chronic" form of cluster headaches, I have been told. Two years. Every day. Three to too-numerous-to-count daily. Looking for the med that helps at the onset of the severe pain or at least kills the severe pain. I sleep days and stay up nights because the lack of light (particularly bright and reflective light) helps keep the frequency down; however, I am awake for most of my events. My wife says she can hear me sometimes yell out in pain or wimper in my sleep, but I do not remember those. She checks on me and says I will often have my hand over my right head or eye. Trying to find humor in this, after a few too many percocet, I apparently try to push my eye back in because it feels like it is "falling out, and I gotta get it back in there." Well, that's my story. Some of it, anyway. Dan, Colo Springs, CO
Dan <drkern21@yahoo.com>
Colorado Springs, CO USA

I've been trying to register here today so that I could use the message boards, but I keep getting timed out and will just make an entry here for now. I think it's great that there's a group like this for ch sufferers - what a godsend! My story is that 2 years ago, while I was battling situational depression (I have been caring for a teen dtr who is bipolar and has been suicidal/manic for years, won't take meds, etc - it was killing me and my family) I trialed Wellbutrin and within 36 hours I had a headache so bad I thought I was having a stroke, or something worse. A brain MRI ruled that out. Doctor tried to tell me it was a migraine. I trialed some migraine meds, none worked very well, and I just wanted pain meds to get through the day. I started to read up on types of headaches, and now know without a doubt it was a cluster headache. Since that time, I have not had as severe an episode as the first one, but I do still have them at random times to different degrees. Sometimes there will just be minor symptoms that seem to last weeks/months. The most common is just an ever-present "pressure" behind my left eye, extending to my sinus and sometimes down my left arm, and a droopy eyelid/runny nose, with an occasional stabbing pain. I've been trying to just "deal with it" but after reading through this site, I see now there are some different things I can do to see if I can avoid more meds. My best wishes to all the ch sufferers out there, and thanks for listening...
JR Paulsen <JRPaulsen1@aol.com>
Eugene, OR USA

I am a 30 yr old suffering from ch's for about 8 yrs. I was misdiagnosed for about 4 yrs.I always had cycles every spring and fall. I then started skipping the spring cycles and almost felt blessed these were to only occur 1 time a year. I was put on prednisone to stop last cycle and started taking verapamil, valproic acid, and cymbalta. I don't know if this is what helped but I became h/a free almost 2 yrs! Then this fall like clockwork the beast returned as fast as he had left last time. This time around due to medical reasons I am only on pain meds and oxygen. I sleep with it on and sleep better than I ever had in a cycle. I also started going to the chiropractor and this is actually working or at least it is helping the pain in my neck and head from being as horrible as it usually is. I would do anything to relieve the pain and myself from these h/a's. I also think time might be on my side because this is already the 4th week in this cycle. Good luck to all!
Theresa <trsacrtr@yahoo.com>
Wilsonville, IL USA

I just started with CH about a week ago. I can't remember the last time I had an episode, but when it started this time I remember having similar many years ago. I am so glad to know that I am not alone.
John Litzenberger <jlitzen1@msn.com>
Hudson, FL United States

Many many thanks. I don't think I'm in the same league as some of you on here - mine last a few minutes instead of hours and I'm only getting a dozen a day. I'm going to try the water trick - my doctor's been playing around with it, without much luck yet.
Guy <wadgebeast@hotmail.com>
Plymouth, Devon UK

My best friend has cluster headaches, I have never seen an episode, she doesn't want me to and to be honest it scares the crap out of me. Is there anything I can do to help her, especially when she becomes suicidal?
Blaine
Delta, BC Canada

I am a sufferer.
Wendy Moore <wnmoo365@aol.com>
Warrington, United Kingdom

I have been diagnosed with CH - until now they have followed the normal pattern but now I am having one which has lasted 6 hours solidly - I need urgent help - I don;t know what to do.
Maddy <maddybunker@btinternet.com>
Bromsgrove, UK

my fiance' has been suffering from clusters for about 20-25 years. we've been together for 18 years and has only been in remission once that lasted for two years after he was in a very tragic accident. he was in an explosion, badly burned in an induced coma and on life support for 3 weeks. After that the headaches went away for two years. Hasn't he been through enough. The headaches are back
ann sydow <annemawee@yahoo.com>
lockport, ny USA

I'm losing it and don't know how much more I can take. I've been fighting this demonic assault for almost fifteen years now and am at the end of my tether. I take imitrex injections (thank you for the 3x tip on stretching the dosage) Still, I've spent over four thousand dollars over the last month and a half alone, and have completely lost track of how much I've spent this year, let alone the last several years. I am unable to get any meaningful insurance coverage that will cover my headaches. I just got over one of the worst headaches I've ever had an hour ago (and that's saying a lot. Remember the scene in the movie spinal tap "this goes to eleven!")and am totally freaked out as I am writing this. My girlfriend of seven years and the love of my life recently left me, the headaches and the effect on my temper and personality playing a major part in the breakup. Heartache is the only thing in life that compares to the pain of clusters. Why is this happening to me? I try to keep things in perspective as I'm pretty healthy outside of this condition, and I don't have cancer or parkinson's or ms, and when I start to feel sorry for myself often see someone with real medical problems with whom I would never trade my problems, but this is really starting to get me and I don't know how much more I can take of this. I've got a doctor's appointment in a few hours, but we've tried all the prophylactic meds and none seem to work, or they make me crazy. (I've got the world's best doctor, whose son-in-law took his own life because of clusters a few years back, so it's very personal for him) I understand what victims of torture say when they say everyone has their breaking point, and I've experienced it many times, but I have no information or intelligence to give up to make it stop and the pain continues way beyond it. Thank God for imitrex. ( I should probably buy stock in Glaxosmithkline) In the old days I just had to suck it up and take it. I'm not looking for sympathy, but merely someone who understands what I'm going through, as although the people in my life feel bad for me and wish it would cease, they just don't get how unbelievably bad the pain actually is. I'm trying to stay strong, but this is getting to be too much to bear. Thanks for giving me the forum to get this off my chest. Peace, love and pain free lives to all of you. BruceJ
BruceJ <originalfrogg@hotmail.com>
phoenix, AZ USA

hi there, my names andy and ahve had this thing in my head for th last 18 months or so , havent been diagnosed to date but hope i will be soon as i have been listening to doctors say"oh no , you cant have migraines becaue,,,," I could go in to details but life is to short ,am really glad to have found this site and it will soon be like a second home , stay safe , andy
andy taylor <andrew@ataylor891.wanadoo.co.uk>
chester, uk

wow what can i say that hasn't already been said. hi my name is jay, i've been sufferin with this monster since early 90's. always thought this was my teeth,this monster started hittin me everyday since this june, sometimes 3-5 times a day and sometimes for hrs. guess i'm lucky my pcp doc has heard of these things. he hooked me straight up to o2 and gave me a perscription for ergotimine or somethin like that. so far this seems to keep the monster at bay, but he still lets me know he's there.god bless you all,thanks for all the wonderful info and sharin your stories, they help reassure me that i'm not crazy
jay <jayandnikk_k@yahoo.com>
anaheim, ca USA

I really enjoy coming to this website. I learn something new everytime I visit. I have suffered through Cluster Headaches for about 7 years now. Every year seems to get worse I hope in a year when I turn 30 they will go away. I hope for this every year. I currently work on a ambulance omg when I'm having a H/A in the middle of a call and the sirens are blasting and my partner is shouting at me I feel as if I'm in limbo, somwhere in between reality and space, and I cant seem to get my stuff together. This year I thought I would not have any cause I normally get them during the spring or summer, but now the weather is changing THERE BACK. Oh well I love the website keep up the good work. J.Frawley
Jeffry Frawley <jeffry.frawley@us.army.mil>
Gatesville, Tx USA

Hi I'm Kevin and I have been suffering from Clusters since 1994,I,m 37years old.I would like to say how thankful I am to find this site,just to know that there are other helpless souls out there fighting this crap.It claims me to know that other sufferers know what is going on ,and to know that I'm NOT crazy.I have gone to so many Pro's for treatments with a hit or mis treatments and tests that sometimes I do believe that I have cracked.Even with support from family and co-workers I think "Sid"is getting the best of me."Sid" is the name of the demon in my head(figure its' my demon headach I'll name it!)"Sid" ,or "Sidney" stands for "Sedistic lil' Bast---".Ha HA!I just hope that someone can find a treatments that works,so no one else has to go through this.Once again I am glad to find a site with other people who suffer also to talk to and to help each other and to get the word out to the rest of the world.
Kevin <kevinej02@earthlink.net>
Mont Alto, Pa USA

hello, my name is penney, i just found out about 2 days ago, what i was having, at first i thought i was suffering from sinus pressure, the pain was so intense, i started taking sinus meds, and they did not work, then the clusters kept comming, i've never ever had so much pain on the left side of my head, i literly thought i was going to die, i finally went to the emergency room, complaining of sinus pressure, the doctor's then gave me this expensive antibiotics and pressure meds, along w/ pain meds. the medicine made me so sick, and i kept throwing up, finally i went to my family doctor after 2 days of non stop pain, still thinking i have sinus, because im also a migraine sufferer and i thought i would know what a migraine felt like, and still complaining of sinuses, they gave me a cat-scan, and the results came back, as no sinus, i kept telling these doctors, that my pain is so intense on my left side, i felt as though my head would explode, i would be ok, for a while, and then the pain would come again, again they gave me nothing, again i get the pain the very next day, still thinking it's my sinuses,. i go to the er again, and they draw bllod, and after 5 hrs of sitting there, he comes back and tells me im having headaches, i was so mad @ them, because i told them i know what headaches feel like, and this is no headache and i will be back, finally after i got home and got on my computer, i looked up headaches on left side, and came across the article about cluster headaches and migraines, as i was reading, it was me, i couldn't believe these were my symptons, i was relieve, but still in pain, all these people who suffer from this intense pain, i mean intense, god be w/ us all. this is the worst pain i've ever had, i cant sleep, talk on the phone, i get sick to my stomach, and i dont wish this on anyone, im glad there's someone out there that has what i have, and im not going crazy. now that i know what is going on, this meds they put me on will work. Sincerely penney
penney harrison <pyharr@yahoo.com>
lancaster, pa USA

Thanks for this site. My husband is a Chronic Daily Cluster Headache sufferer since 1985. For the last year for some reason, and we don't know why, he was thankfully headache free. It was wonderful. Unfortunately he suffers from other ailments so he was not pain free but he was headache free. Then three weeks ago the headaches started again, worse than ever. What a blow. Now not only are they back to back two and three times each night, but now they happen during the day too (in addition) , while he is awake! Is there any mercy, is there any relief? We have battled this problem together since the onset. We have tried so many different remedies. Too many to list right now. We even went to TX to see a specialist about the radio frequency nerve cutting surgery on some ganglion nerve, but, it was too scary, and he would drool all the time. (Who wants that!) At that point his good hours out weighed the bad ones. Sorry, I ramble.... No sleep in many days. Today I read the water idea, on your website, and even if it doesn't work at least it is hope and we will give it a go. I also saw a few drugs listed that we don't think we have tried, we will give them a go too if we get his doctors to prescribe them. My plan: Tonite, I will walk behind my love with ice, a towel, a blanket, tell him to breathe, and now I will give him a bottles of water and force him to drink it as he does his dance, and cries, and slams his head on the walls and floor. Last week our hope was trampled as we tried to find a neurologist at Mayo Clinic here in Jacksonville. We hoped to see if new treatments had been developed that we hadn't heard of, or tried. But instead we found out that their Neurologists only take new onset cases not cases that have already been diagnosed. I guess they don't want to be depressed like us. (What oath did they take!) And tomorrow I will continue our search for a neurologist who will take patients with a history of Chronic Daily Headaches in Jacksonville, FL. Thank you for the hope!
Dawn <modwad5@comcast.net>
jacksonville, fl USA

Any Women?
christi <christifitz@comcast.net>
Mechanicsville, va USA

I am still in shock after reading some of the information that i have read the last two days concerning cluster headaches. i have extreme headaches for the last 4 or 5 summers, mostly june july and august..it was not until this past thursday that my doctor said..you know i think you are suffering from cluster headaches. i had no clue as to what he was talking about...he told me nothing will help and scheduled for a cat scan just in case. after my boss ask me what the doc had said and i told her cluster headaches and i saw the look of concern on her face, i immediately thought uh oh..this must not be good. so i started reading up on it..and everything decribes me to a T. now i am really scared how long will thing go on? will it become chronic?..everything i read points to my symptoms, getting over heated, the pain in the eye feeling like my nostril is collapsing, the horrible pain in my cheek and in my teeth and then the agitation, pacing and crying..and i do vomit..then i collapse but the headache is still there just not as intense..and it lasts for two more days..and then in about three weeks it starts again, usually on a monday. alot of things make more sense thanks to reading and knowing that it's not just me really helps too. i did find out the hard way that popping a zillion kinds of over the counter stuff won't help so i won't bother anymore..and when you take enough sinus medicines your blood pressure will go up! thanks for being here.
Ann <aemacomber1962@yahoo.com>
elkins, wv USA

I suffer from cluster headaches. I am a female which is very uncommon. I have tried everything. I have found Relpax to work within an hour after the headache comes on. Unfortunatly insurance only cover 6 pills. I need them for at least a month. Talking to my mother for that hour is also a big help. We have named the headache "Harold". I am ready for Harold to pack his bags and leave!
Michele <parishlucy@aol.com>
Gahanna, OH USA

Finally, a place to find people that really can understand how crazy these things can make a person. I've had em for about 15 years, annually, but with no set pattern. the episodes usually last 2 to 6 weeks - pure hell, you know. It is very comforting to know this site is here for all of us though. I've been rolling in my bed since i left work for lunch today, with the beast, when i discovered this site. Lots of great info i hope to try. Acupuncture has really worked for me before, meaning that it seems to have shortened the whole ordeal, or sped it up - not much help when your in the middle of one, but i'm trying the water, the herbs, and believe it or not - HeadOn works a little!! the tingle seems to fight off the shadows and relax me when I'm at a kip 7+. Try it and i sincerely hope it helps someone out there. i know you know about this stuff - they sell it everywhere. these things suck and i'll try ANYTHING. Also, can anyone please tell me a good place to score some oxygen? Good luck to all of you. Since i'm in it now, i'm sure i'll be back on the site soon. Maybe with some good info for you. thanks again for the site
kevin <kevincibulka@yahoo.com>
san diego, ca USA

first post, worn out, near hopeless. episodes established about 10-12 years of age, now 50. self-diagnosed about 25, tried every sort of treatment, tricks & techniques. Reluctant to share- little positive to offer. Life is pain. Sorry
ChasM <cmmca@comcast.net>
boulder, co USA

I've been a Cluster Buster since about 1976. I've been to several Neurologists. I've tried most of the prescribed pharmaceuticals. I hate them all and I'm sure my liver agrees. Through the years I have always tried to put together some kind of pattern or remedy. People say Oh, it must be stress or Oh, it must be allergies. Bullshit! It attacks when it wants to because it can. I've always thought it must have a mind of it's own because it can attack the left side for about a month or two, go away, and them come back and hit you on the right side. That sucks! I think I may have finally come up with something that works better than anything I have tried before. Ephedrine. It doesn't take much! 1/2 of a 25mg pill about 4pm before I come home from work. Then another 1/4 about 8pm. Any more than that and you'll never get to sleep. If you have trouble sleeping, try 3mg of Melatonin. It works for me. With this recipe, I've even gotten away with having a glass of wine or a beer with my dinner, as long as the Ephedrine has gotten into the system first. Sometimes you can tell that the headache is there, but the ephedrine won't let it through! I bought a bottle of 1000 ephedrine tablets years ago when it was still legal to sell them in the back of magazines. I don't know how to buy it now, but I'm sure it's available somewhere. Let me see, no doctor visit, no prescription co-pay and best of all, no Headaches!!!!! Good Luck! Wish you all well, Jim
Jim Sigismondi <captqc@aol.com>
Jupiter, FL USA

im eddie barnett in ohio i have cluster headaches for 12 years now. But over time theve gotton severely worse i cant sleep please help im in so much pain i almost go crazy i get short of breath during my attacks and very moody it feels like im dieing or my head is explodding
Eddie Barnett
washington court house, oh USA

Hi everyone. I'm writing as something of a lucky one. My latest cycle ended with a bit of a whimper 3 days ago, after 3 months-ish. It was just that end of cycle 'we're going away for now, but we'll be back' kind of feeling. I've slept 10 hours for each night since then. I no longer dread closing my eyes for fear of more pain. Or finding bruises on my head or knuckles. So for the moment life is as 'normal' as it can ever be. I'm thinking of all of you out there still suffering, wherever you are. And bless this this site and all who surf through it.
martin <bennydog@fsmail.net>
cambridge, uk

I have just recently been diagnosed and am beginning to learn more about this. I'm so glad to have found this site just knowing that there are others is encouraging. I first began experiencing CH about a year ago while I was in the Coast Guard. It was bad enough that I've been experiencing incredible pain that is so commonly mis-diagnosed but to have to go to a military Dr. who's first thought is that your faking so that you can get out of work was maddening. Anyway I'm glad I now have a place I can go to where people will be understanding of my pain.
Mark Oldland <maoldland@yahoo.com>
Philadelphia , PA USA

This web site has been very helpful, I have just went to the dr as of yesterday after suffering from what I was diagnosed with Cluster Headaches for approx 4 weeks now. She sent me for a Cat Scan and lab work, gave me predisone and neurontin(spelling?) I am thankful that I finally gave in going to the dr, and after reading on this site, I have found that I am not the only one. She did tell me that it is not common for women to be a victim, but possible. The pain is so extreme I would rather be in labor without an epideral than go through what I have been going through. It wakes me between 12:30a-2:30a and lasts approx 45 min- 1 hr, the right side of my head feels like it is going to explode. My eye turns blood red,tears, my nose runs and I lose hearing in my right ear. I pace the floor, rock like a baby, cry, I have even gone to extreme of banging my head against the floor praying that the pain will end. I would rather die than go through this. I am running on nothing, I am at my wits ends, between working full time and taking care of my children, I am empty. I have tried EVERYTHING, so far nothing has worked. Hopefully the meds the dr gave me will work. Thanks again for this very informative site.
Krista <johnsk18@odjfs.state.oh.us>
FARMERSVILLE, OH USA

I started to cry when I finally found this website. I have been mis-diagnosed for over 20 years! I didn't know I had cluster headaches until I started to read the symptoms listed here. I feel so relieved that I'm not alone, not a total anomally, not a freak with these unusual, painful, weird, totally debilitating headaches. Wow, all the times people have looked at me funny when I say I have a headache and need to go home from work. Like I'm trying to get out of something when all I'm really worried about is getting through the next few hours, especially the drive home with this horrible pain cutting through my head. I am still reeling from the information and have a LOT to digest. I have so many ideas of new things to try. I've never heard of using O2 or water. I mostly pace and use ice and I take Imitrex. I had a cluster when I was pregnant and I didn't know if I'd make it through that one when I couldn't take anything. Now I'm 41 with a 3 year old. I'm afraid to go to sleep when the beast is in town. This is one of those nights. I started my cluster headaches when I was about 20 and in college. Can you believe, the fool dr. I went to see that first time told me to take a "stress reduction class!" Talk about being dismissive. I am looking forward to turning a new leaf. Thank you for bringing this website into being, for creating a wonderful supportive community, and for sharing information.
Kellie <teakellie6@yahoo.com>
Loomis, CA USA

Thanks for this site.
Kel Green <k5k5k9@hotmail.com>
Burlington, ont Canada

i have read some more entries on the board-i kno this works for me and my dad who has clusters-maybe this will work for some of you--you get into a luke warm shower (barely feeling any heat) then you turn it ice cold-i am talking shivering cold-see my dad and i when we get them our bodies heat up like we are on fire as a result of the pain-cooling our systems down helps-after the shower hit the o2 tank and have someone get a bowl of ice water and place it on the pulse points--breathe slowly in and out-rocking back and forth ok- but try not to do too much-i kno that is hard but ya gotta try-i kno you breathe shallow and fast too but ya gotta breath deep. this remedy usually works unless it is so bad then we take trip to er--but i hate to do that so i really try to do this at home-we too bang our heads and pace and rock and well i scream and bang my fists on the hardwood floors i would rather pain in my hand than my head-hopefully this works for some of you out there like it has for me and my dad-weve been sufferers a long time-
blondie brill <pureevil9@comcast.net>
USA

about 1/2 hour ago i got a knock on the door--i closed my eyes and prayed this unwanted guest away--i quickly grabbed for the ice bag and just laid down and closed my eyes--i knew who it was and i knew he wasnt going away--yep the grim reaper visited again--i call these headaches that because i just feel like i could just die. the burning in my face started first then icepick like pain in the rear--this one lasted about 30 minutes--short one i kno--but i still see my unwanted visitor sitting and waiting--i kno i am in store for more this evening i CAN FEEL it. the jabs in my eyes where i want to just dig it out with a steak knife because that would feel better right now--i try to remain calm but how can i? the pain is just so severe--thank god i have somewhere to turn and just vent to--who ever started this site is just a genius and thank you-i have been migraine free for about 4 months. i just hate it when they start again--i keep tossing and turning not knowing if they will come again-like tonight-i cant sleep-i know i am in store for more and who the hell wants to wake up like a crazed lunatic-then i have to get up in the morning and act like miss mary sunshine for work--and people want to kno why i get cranky sometimes--so i tell them and they are like well its just a headache--yea well i will give you just a headache-come to my house just 1 night just 1 and tell me if they are just headaches!! i kno i may have rambled here and i am sorry-but i just cant think when he comes for his visits-that is what these things do to me-i tried my same old routine but tonight it is just not working-i get a slightly warm shower and then shock my system by turning it ice cold-(my body temp rises altho you will never see it on a thermomiter or on a blood pressure test-it rises as a reaction to the pain-a cold shower cools the system-)then straight to the oxygen tank-(i have no meds because my husband and i are trying to start a family--so i am going at these things ALONE) nothing seems to be working-they are just rearing their ugly head tonight-for all of you who are spouses of cluster sufferers-you are strong and understanding-thank you-i dont kno what i would do without my husband!! well thanks for letting me vent-my pain is getting more severe and i must tend to the reaper for what i hope is the last time this evening-i kno he will be back tomorrow morning and every morning after that for the next 6 weeks--good night everyone-thanks again.
blondie brill <pureevil9@comcast.net>
USA

Really sick of this shit, but still trying to find any thing to stop or relieve the Pain.Any suggestions?
Cecil Porter <cecilnchrisp@yahoo.com>
Owatonna, Mn USA

My husband suffers with clusters. He is 47 and they began when he was 30. I understand what the sufferer and the family go through. It was years before any doctor would diagoise him. He was in remission for 3 years. He is now having the clusters again. They always start Aug. or Sept. and last 3-6 months. I am so happy to have found this website. I now have people I can identify with and not think me insane or my family. He takes imitrex and yes they are expensive. His symptons are the same as everyone else on this web site. If he has one while we are out it can be very difficult to drive because he is yelling and telling me to stop the car. Yes I am helpless to help him. I dont blame my self anymore and we have been married 24 years. Thanks for listening(wife of sufferer)
D Pruitt
Rockwall, TX USA

I am 32 and have suffered these things for as long as I can remember. For me, they start with my left eye twitching, then onto the sensitivity to light and sound. After that, the temple spikes and on to the tension in the neck and shoulders. After that, it's as random of a pinwheel of pain that you can imagine. My Fiance, bless her, is wonderful. I know that it's hard on her because she wants so desperately to find a resolution to this. I am in the middle of a CH and I think that perhaps at one point, I had about 2-5 minutes of free non-pain time. after that, it came back full force x3. I refuse to bang my head against a wall though ... lol
Sylvyor <sylvyor.bleid@yahoo.com>
Fredericksburg, Va USA

My cluster headaches started about 12 years ago when I was 25. At first I didn't know what they were and just thought they were normal headaches but when they came back about 2 years later and seemed to be triggered by hunger of alcohol, I decided to see a doctor. He diagnosed cluster headaches but didn't really help in terms of treatment. They have recurred quite regularly every 2 to 2 1/2 years. Sometimes I can make them go away without the need for medication - others I have to take pain killers. God they hurt!!!
CLIVE OGDEN <clive.ogden@kodak.com>
London, United Kingdom

Wow, this website is sooo helpful! I never had a headache in my life until these started about 6 years ago I am now 48 years old. At first they were not a big deal. They came maybe a few times a month and lasted maybe 15 minutes at the most. Then they would go away for months at a time. I thought I could live with it. But approx. 6 mos. ago they came back with a vengeance! I was getting them daily and I thought I was going to go insane! 4 months ago, my doctor put me on Topamax and the headaches went away, I thought I had found the cure, I was pain free for 53 days, but now they came back even worse. 2 to 3 times a day and lasting 2 to 3 hours. I wake up at 3am with my left eye tearing and feeling like my left temple is about to explode. I have been diagnosed with Cluster headaches but I never knew what they were, and tonight I found this website.. I can't believe what I'm reading. No one had truly explained me what they were. I would like to try Oxygen, can anyone tell me where I can buy the tanks? Thank you everyone, it really helps to know there are others who know what you're going thru! I'm especially surprised to see so many woman, I was told my doctors it was a predominantly male illness. Thanks again, Sandra B, West Hills, CA
Sandra B <smbresloww4@aol.com>
West Hills, CA USA

I have just recently started suffering from Cluster headaches and I would love to learn more.
Sandra Breslow <smbreslow4@aol.com>
Woodland Hills, CA USA

I have been suffering from cluster headaches for more than 10 years and they are the worst so I am glad that I have found others that suffer from the the same sickness as I do.I wish that we didn't. I am going to try the water remedy, but consult with my physician first. Thanks for having such a great website for people like us.
Moana <lott66109@msn.com>
Baltimore, MD USA

I have recently become friends with a clusterheadache person. This person has not had his first cycle.... but it is coming up - in the Fall. I sincerely hope that perhaps a miracle will happen and he won't get these terrible headaches and if he does, perhaps it won't be that harsh. I get headaches... but only regular ones - daily though - and I MUST take non-aspirin or aspirin for it otherwise it becomes unbearable. Anyway... Blessings on your guys... very strong people.
Sharon
NY USA

hi my husband has recently been diagnosed with this horrible illness. it has been a truly frightening experience for us all i felt so helpless not being able to anything for my beloved when he is in so much pain. our children kept asking me if their daddy was going to die. i kept taking him to our doctor who kept telling us it was just a classic migraine but we knew it wasn't it was perserverence that finally got it recognised after 16 agonising weeks of holding my hubby whilst he sobbed in my arms asking why him. now things are a lot more manageable there is a small glimmer of light at the end of the long long tunnel.many thanx for reading this terri xxxxxx
terri <tezziex6@yahoo.co.uk>
kent, uk

Hi again all there are back and seem to be worse, can anyone tell me if they get a popping noise in the ear on the effected side of the ch pain. I would be very greatfull for you input Kind Regards Katie
Katie <katielovesjoke@msn.com>
Glasgow, UK

I am 29 I have had these damn headaches since I was young. I have been to many doctors, nuerologist had so many test run I feel like an experiment. I have been diagnosed as migraines, depression, bi-polar you name it I have had it. I have taken blood pressure meds, depakote, tegratol, topamax, all the imitrex, triptans, you name it I have taken it. Many trips to the er and lots of demerol and phenergran that finally stops the pain, which in turn makes the docs think I am just trying to get high, not the case at all. I have paced the floor, rocked back and forth banging my head on the wall cried. I have even had sinus surgery and yep they are still here worse than ever..I take steroids all the time. I can't seem to ever breathe out of my nose and my eyes are always swollen. My father suffers from the same thing and he just now started on lithium, I am waiting to see how that works. I have missed 4 days of work now and been to the er once, I feel like I am going crazy and I can't take it anymore. I just want the pain to stop......... e-mail Heather.Dorrell@sbcglobal.net
Heather Dorrell <Heather.Dorrell@sbcglobal.net>
Marceline, mo USA

I am back and so are my cluster headaches. It has been three great years without them. I have had them since I was around 14 and I am 47, and what I would like to know is, do you ever outgrow these? You must, please someone out there tell me that at some point in your life, you don't get them anymore!
Diane <faenzabeachsv@aol.com>
Rocky Hill, Ct USA

I'm a 59 year old male and I just finished another CH. I hadn't had a CH for about two years and I actually thougt they were gone. I'm taking Neurontin and I hope this works. I've tryed the 4% Lidocain and many times this seems to shorten the worst pain. Oxygen helps a little. The direct pressure,on the right side of my head, the pain side, also seems to help a little. I've had CH for at least 20 years and just hope some day they go away forever (before death). The worry of waking up with one gets really old. I'm happy my bouts last only about six weeks and I have a very understanding family. I was very happy to find this website and it's good to hear from othe CH victims. I can remember years ago just trying to explain to doctors, what it was. Now it seems they listen more and are willing to read technical info from the internet Stay healthy and I hope you find what works best for you...just to minimize the terrible pain!
Hugh <hug11@aol.com>
Pinole, CA USA

Hello people of the pain world Ive had the demon as a sidekick for almost 16yrs 13yrs stright before a remission and that was for 1yr 2mo.11days 11hrs.the demon got pissed I was being normal jumped up beat my butt real good.about 4hrs long.I do the water thing and 02.When it gets bad its imitrex 100mg Ichew them like candy.and if that doesnt work I TELL MY WIFE to call the special number 911.This last cycle started the last 3 days of june 06its now aug 06.and hes still here there down to 2 or 4 aday last night it was back to the er and the very best of knockout drugs put the demon out for 6 hrs. Oh ya he got me up at 320am yep he was pissed so we danced the rest of the night.People I had a doctor for 7yrs he told me I was the only person that he knew that had this thing.well when I found out he was full of crap I let him go real fast Ive fired 3 drs 4 lawers in last 5 years.One thing Ive got a book coming out this yearand I say dont let these doctors push you around they work for you not you for them.if you dont like them leave there are more DRS.mostlikly better.I WILL STAY IN TOUCH bigdaddy email bigdaddy55@DSLEXTREME.COM
bigdaddy <bigdaddy55@dslextreme.com>
Pomona, ca USA

My partner Barry suffers from Cluster Headaches,he is in severe pain , i am a nurse and i thought a compassionate one at that until Barry started suffering from this in 2004 he is now on his 2nd episode and i had forgot how life limmiting they are for all the family, my 3 teenagers have to be quiet, music is a no no,tempers are frayed and sex life is on hold until it passes.We are coping but i need time for more research any help would be well recieved.
beverley charlton <beverley.charlton@cddah.nhs.uk>
Durham, England

Hi people Im dave bigdaddy to my friends Ive had the demond for 15 yrs 13 yrs stright before my 1st remisson that was just14 mos Ive tried every drug that man has made nothing has worked IM now on my 8th week of this new cycle.163 headaches 4 trips to ER more dope than any man should take but what can you do.when the demon wants to play he plays you know how this s.o.b. is.OH ya Im 56 yrs young.I do the water and 02trip it does work on the smaller ones but bigger ones nothing but the good stuff works at the ER works if Iget enough so if any body has a good idea let me know.thanks.last night was 2hrs 40 min.long bigdaddy
dave graves <bigdaddy55@dslextreme.com>
Pomona, ca USA

Great Site Happy that there at least some people who understand what we are going through. Regards
Hans Deroo
Bruges, Belgium

I've been suffering from Clusters since I was about 23 years old. I'm 48 now. In the early years they weren't as bad as they have been in the last, say 12 years. I went to different Drs. and got different diagnoses, until I read about clusters and told my Dr. about them. They come on any time of year, sometimes even missing a year or 2, always making you believe they are finally done. I had them in 2003 but not again til now, 2006. My Nuerologist says I will out grow them soon as most people don't get them after middle age. I can't wait to grow up! Every year we try something different, the Imitrex has worked the best, but not as well this year as before, almost like the demon figures a way around any possible cure. I actually found out about Imitrex on this site, bought some in Mexico, and told my Dr. it seemed to work. He gave me a prescription. Why didn't he come up with this before I did? I'm going to also try Verapamil for a week, but I think I tried this about 12 yrs. ago to no avail. After that it will be Prednisone again, which did seem to work before, just changes my mental being for awhile, sometimes Euphoric, another time a little loaded. Hard to run a business on drugs. Thanks for this great site! Good to vent
Barry Brandt <barry@brandtpainting.com>
Upland, CA USA

hello everybody. i got an headache last week. after a couple of days i went to the doctor who said that i had clusters headache, the symptoms matches with every thing i have read about cluster. but i didnt have as much pain as you guys but the day i visited the doctor it was really bad. but he gave me a shot(no needle it was a thin yellow plastic bottle about 5-6 cm), i dont know the correct english word for it, but i got it in my number 2 together with som pills also in my number 2, an 2 days later my headache was gone. i hope this can be to some use for you guys. good luck to everybody!
jebsen <yebz1@hotmail.com>
bergen, norway

I do not suffer from cluster headaches but my husband does, well I think, he has never been diagnosed but he has had them since he was a kid, he is now 39. He actually was without these headaches for almost two years and now they are back as if they had never left, very disappointing to my husband who could really use some sleep. He has all the symptoms mentioned on this sight I could not believe what I was reading it was as if my husband was writing it himself. I have shared some of the information on the sight with him and maybe it could help him atleast let him know he is not alone.
vicki <goody2shoes9291@yahoo.com>
ny USA

Hello, I've been suffering from headaches for quite sometime now, and today I finally got the answer that I suffer from cluster headaches!At the moment I am at work with this excruciating pain in my right eye, ear, nose, cheek and mouth.I am going crazy and I want it to stop.I am getting so much pain I would like to smash this PC in pieces. Please help me. My doctor suggested a painkiller with Ibuprofen, but I just read on this site that it might not be good. Please help me.
JACKIE GRIMA <vj7600@yahoo.it>
SLIEMA, MALTA

hi im kelly im 30 and have been a clusterhead for 8 years.iam still in deniel though.my first time was awful(there all awful)but not knowing what this thing was, was the worst.i took every drug going and more.the crunch came when 32 paracetamol had gone in 36 hours,i couldent of taken that many,could i? i didnt know,i was soo tired,i just hadent a clue.so not only had i got cluster headaches,i now had liver failier to.my doc new what my problem was,he was just not sure what treatment to use,so what the hell lets use everything.that spell lasted 11 long and hard months,and with 2 children under 4 it was hard for everyone.i am,i feel a lucky 1,though,i got diagnosed quick and only get them every 4 years,they do last for about 10 months but iv learned to cope.well the reason im writing this is another 4 years has passed and yes these babies are back(barstards) and this time i have a 14 month baby,and what with her teething and my heads, sleep seems to be a thing of the passed.i know ill cope we have too.
kelly hill <graham.hill4083@ntlworld.com>
england

Hi, I'm an RN doing research for a paper. This site is awesome! It has excellent information on Cluster Headaches and I really appreciate the time and effort that went into putting it together!! Thank you very much for your work and dedication to all those who suffer from this painful condition!! Lynn Waugh, RN
Lynn Waugh, RN <crashcart@griddlecat.com>
Ann Arbor, MI USA

I have visited the site many time over the years-never posted anything! I have had CH 18 years cycles getting longer and worse. Cycle started in March 06, and still going! Had worst 2 weeks- 6 to 7 attacks a night. On pred, verap and O2, however, nothing is working. Last night the worst-my greastest fear I think is happening the O2 is failing. If any one has any new suggestions would love to hear them! Also am trying Kudzu. THANKS
Lesley <dawlaw322@bellsouth.net>
Jacksonville, FL USA

I am 45 year old male experiencing bad headaches that have been occuring non stop for 2 months. I have just started taking verapamil yesterday and I am hoping for relief that hasnt happened yet. I am looking for information and hope. I have also just started the water treatment < 10 mins ago> upon reading about it.
Randy Caldwell <randysr@accessnet.com>
Hampton, Va USA

I'm glad i'm not the only one to bang my head with objects to try to crush the demon. Had a terrible night last night, way of on the KIP scale. I'm exuasted and feels like a serious hangover today.The worst is to go to work feeling like this, not knowing if its gonna hit during office hours, people thinking i had a party last night, them not being able to understand what we go through on an average night.I gave up on trying to explain. Hope you all have a PF day. Think of it this way, can't realy get worse, can it?
Gerrit <gerritb@cosmopro.co.za>
Pretoria, South Africa

I am sooo glad to have found this site; I can more than relate to people who are feeling lonely due to the fact that only another cluster headache sufferer understands what we are going through. If I can do anything to help anyone, I'm here; just drop me an email. Pain free life to everyone!!! Judith
Judith Molnar <mistiqualisus@yahoo.com>
Kissimmee, FL USA

Thanks...your site has been very helpful. I'm 57 and have CH's for 3 yrs. Each Cycle seems to get harder and longer. Thanks to my O2 concentrator I'm able to make it through most of the time. This demon interferes with everything and doesn't care where I am or what I'm doing. Thanks Larry
Larry Findley <victorfin@sbcglobal.net>
Rock Island, IL USA

Hi! I'm a ch sufferer since 2001. I've been episodic, then chronic, now my ch in remission. I'm here to support everyone. Join the clusterfamily at the message board. Looking forward to meething you all in there! Best wishes & PFtime to all!
sanna/sandie99 <sannahillu@hotmail.com>
Helsinki/Jyväskylä, Finland

I've been CH for 3 years. The only thing that helps is O2 10-20 minutes. I did use Imitrex tablets but am concerned about side effects. They come episodic 1-1 1/2 years apart and last about 6 weeks. Each year they have become more intense. I'm 57 and a retired teacher. Thanks for the site. Larry
Larry Findley <victorfin@sbcglobal.net>
Rock Island, IL USA

Hi, I just introduced myself earlier, but I forgot to add something. My CH's affect my upper & lower gum, teeth and jaw as well as my eye and temple. My last episode lasted for days with just my teeth & gums killing me. I was ready to pull out my teeth, but I knew from the little research that I'd done that I didn't have a dental problem. It seems that people sympathized with me when I told I had pain in my mouth. It's about as close as they can come to understanding this pain. Wishing everyone pain free nights and days! Lynette
Lynette DeJesus <Earls_lyn@hotmail.com>
Las Vegas, NV USA

Hello, I'm so thankful for your website. I've just started getting CH this past April which lasted till June. It's July now and I'm so happy to be pain free. I hope to be in remission for a long time (I pray)and now I'm on a quest to learn as much as I can about this so that next time I can be prepared. I's really good to know I'm not alone.
Lynette DeJesus <Earls_Lyn@hotmail.com>
Las Vegas, NV USA

Hi, my name is Sherry. I am really pleased to have found this site. I've been a sufferer for many years. Thanks to all who take the time and energy to support this site.
Sherry Cazaux <sherrycazaux@charter.net>
Covington, LA USA

Amazingly after 16 years, I've found what's wrong with me. My headaches started when I was 19 years old, i'm now 35. I've seen many docotrs, and accupunturists, and nobody has been able to help.People think i'm crazy, nobody understands the pain that i have been dealing with all these years. Everybody, including docotrs, have said migraines, or sinus infections, and everybody has been wrong. My last cycle was 3 years ago, when I was visiting Montreal from Albuquerque, needless to say it completely ruined my canadian vacation. aftyer 3 years, i finally thought the demon in my head was gone.......untill last sunday, I felt a "shadow" coming on, and instantly recognized what it was. I'm in the process of opening a new business and though" not now, this is the last thing i need" here come the mysterious headaches. Tuesday night, I got up to damn near a 10 on the kip scale, and bashed myself in the head with my remote control repeatedly , till i had a giant goose egg on my head. This cycle has been as bad as any i've evr had. Last night, i finally did a google search, i had tried it before, and came across this site. thats when i realized what i have been suffering from all these years. I was relieved in the sense that i now know what's wrong with me, and i'm not the only one out there who suffers form these monsters. just today, i was finally perscribed ergotamine after telling the doc, i suffer from clusters. we'll see if it works, and i'm glad to know i'm not alone
marty <mroc71@yahoo.com>
ABQ, nm USA

Hi I'm Tonya and I have been suffering from ch for 8 years now. My episodes are back thats how I found you guys by doing more research hoping they might have found a cure yea right hu? My episodes usually lasts about a month every year.It had been 18 mos. since my last episode I thought they were gone . I was hoping they were gone but I wasn't that lucky. Every year I call the doctor for an appointment but cant never get in for atleast a month by then thier gone you think the doctor would have some compassion for us but i haven't found any. I was diagnosed after 2 years of having them. They put me on lithium and imitrex nasals, wich worked for a while but then I think I got immune to them, so I went back and got injections and they have been a miracle for me. They stop them in about 2 minutes or less. Thank god I had some left from last year because I cant get in to see the doc for another 2 weeks. They seem to be alot harder and more frequantly than ever before I never had more than 2 a day, but now I'm getting 3-4 a day. Unbelievable!!!!! I know your only suppose to have 2 injections a day but i have taken 3 or 4 to stop them. I don't know what it will do to me, but I know it stops the pain and at the time, all I can think about is the pain. I will ask the doc when I see him about what it can do to me. If anyone knows let me know. I've been to the er before and they tell me I'm not having ch because I'm the wrong sex. I guess they think I was after narcottics. Imitrex is not a narcottic I told them. So I now know that I have to see my doc who diagnosed me or I cant get any help. I highly recommend the imitrex injections they work for me.
Tonya <murnahan08@bellsouth.net>
lawrenceville, ga USA

I'll try to keep this simple but as informative as possible. I am a 56 year old male. I've had Cluster's for a good 27 years now and the one thing I can say from my experience is you never know when and for how long. I've found no treatment to prevent but believe there are remedy s that help lessen the sessions and intensity (see below). However, as Cluster s are individual, roaming, and can alter their nature during a cycle, what appears to be their predictability and what works one day, can change and have no affect the next. One may experience a pattern like the same times each day. But I ve experienced these can change with activity, atmospheric changes, diet, and one s own attitude. 27 years ago, doctor s had little clue to what my headaches were. After seeing at least 5 good doctors, a Neurologist diagnosed my CH s. I have tried every know treatment there is. Hit & miss are what the treatments are called. There is no known cure. One must accept, deal, and always remember they are not chronic (hopefully, none of you are chronic). They will eventually end and life will be beautiful once again. I m not into whining about how terrible my pain is. Duh, these bastards hurt!! Anyone who s pain doesn t hurt, raise your hand. Thought so, we all hurt!! My current cycle started about June 28th in Albuquerque, NM., as just daily annoying sinus irritations. They ve grown into being an actual cycle. It had been 6 years since my last cycle. My current sessions of this cycle started out circling . Like airplanes, they circle around looking for a time and place to land. The point of impact for mine are always in the same place. The left side of my face pinpointing the left temple. At their peak, they affect the entire left side of my head. I describe them as the creature from Alien trying to bust out of my head. This cycle apparently has them mostly happeing at night between 8PM and 2AM. Every now and then I ll get one or more during the day. What has helped so far this cycle, is maintaining a level of particular herbs. Note I said maintaining as one must keep taking them even if they feel relief. Here s what gets me through the day. With breakfast and before bed I have Natural Calm (magnesium) and Feverfew with Dogroot extract in a Ginger tea (A little honey or sugar can help). These help with nerve irritation and sudden blood vessel dilation. 4 to 6 times during the day I take Gingko Biloba extract capsules for blood circulation in the brain. One Claritin or Benedryl in the morning to reduce histamines. 3 to 4 Quercetin capsules also for histamines, and have a vile of Lavender and Peppermint oil to put on my left temple should I get an attack at work. For attacks, I mix 99% pure aloe gel and Cayenne pepper for my temple. I d love to use this at work but the red Cayenne leaves a noticeable mark. I can also put the Lavender/Peppermint oil into hot water to inhale or on my temple if I m at work. The results so far are less frequent attacks (some days I have no attacks). Less intensity (KIP Levels 3-4) in more attacks than none (the Alien only knocks on the inside of my head). And a reduction in duration of more attacks than none (some dissipate in 5 minutes). I still have had a couple of lengthy (over 30 minutes) severe attacks (KIP Levels 6-7). But only a couple instead of many to all. Standing in a hot shower helps pass the time. Previous cycles had consistent intensity (KIP levels of 9-10) everyday, up to 8 sessions a day. Being able to sleep reclined is touch and go. I spend more time sleeping upright in a nice, thick, comfy chair and ottoman. But the biggest aid to helping me cope is my wife. Her help, love, and assistance makes the intolerable go by easier. Even though the attacks make you want to crawl away somewhere and be alone, having someone s support is a big relief in itself. I hope this brings some idea s to try and relief to y all. As I mentioned above. What works for one may not work for another. What works today, may not work tomorrow. Cluster s are as different as those who suffer with them. Drop me a line and let me know.
TheDude <eddmon50@hotmail.com>
Chandler, AZ USA

I Know what would cure me! I have been dealing with cluster headaches for years. I have noticed that I get them more in the winter when I spend too much time out in the cold or in the summer if I spend too much time in Air Conditioning. Like most they then occur when I sleep and last for weeks. I wake and take some type of pill (anything seems to work aspirin, tylenol, firocet, cold medicine,) I've tried them all. I then hold my head till they work and return to sleep. UNFORTUNATELY two hours later I have to do the same thing. What if they made a patch that would let a small amount of pain killer out during the whole night? I don't think a cure will exist during my lifetime but I think a patch might get me through the clusters and keep me from the exhaustion that stems from it. PS don't try something called Head-On. It doesn't work---I rubbed the whole tube on my head and still suffered through the night!
artie <witchammer@si.rr.com>
staten island, ny USA

Hello all, I found some stuff that seams to work very good. Choke berry juice lots of eastern european food stores will have it. Drink it at first signs of CH. 10 min and it works. Just make sure you don't drink it on empty stomach or you will womit. I really hope that this stuff will help those who try it. its inexpensive. You need to chug it about 400ml or 2 glasses. Bless you all. If you have any questions please feel free to email me at anytime. I will be more then glad to provide you with any details. Erik.
Erkin <hasanovam@bk.ru>
Ottawa, ON Canada

I am so glad to find this website. I have suffered from what I think are cluster headaches for years. I came upon this website last night when I woke up with a headache after it finally went away I got ton the net to try and find out what is wrong with me. I have been misdiagnosed with sinus headaches for years. I have a new doctor and I can't wait to talk to him and suggest it may be cluster headaches! And possibly get on some sort of treatment. Thanks for this website it has been a wealth of information. -Eddie
Eddie <akeddie1@yahoo.com>
Omaha, NE USA

Here I go again. The pain is crazy. I start to pull my hair out, banging my head to the wall or the floor, crying, screeming, almost dying. My eye is poppong out en I'm beating it back in my head. I can't walk,, can't eat. It is the most terrible pain in the world. And i'm a woman, so i feel this pain, every day, the whole day 24/7. And the worst thing is, I'm afraid to go asleep. Because I know when I wake up the pain will still be there, but more. When I have my attacks my nose starts to bleed en sometimes my ears do to. My head is going crazy. This is the worst pain in the world. I HATE IT!!!!!!!!!!!!!!!!
Janneke <janneke_l_1@hotmail.com>
Eindhoven, The Netherlands

I don't know if this wil help, but six years ago I had a severe bout of cluster headaches, and after some deductive reasoning (read; pure fluke and desperation)I discovered , much to the dismay of the doctors and specialists, that it was the large doses of Ibuprophin I was taking for a back injury that triggered the episodes. after ceasing Ibuprophin, I have never had another. I hopes this helps someone out there. To this day I have never met a doctor who has encountered this reaction to Ibuprophin.
Dave Johnstone <death2spam@eastlink.ca>
Coldbrook , NS Canada

I'm 33 and my first episode was 7 years ago( diagnosed as sinus infection), then 5 years ago (then correctly diagnosed).The one i had 5 years ago lasted 7 months. This is my third cluster, i'm in the 2nd month. I get about 4 attacs a day that lasts for about 2 hours.Sometimes i get one for a 24 hours. They vary in intencity, the worse is the 2am one, that one normally lasts till 6/7am. After researching CH a lot, i made peace with the fact that there are no answers/cures, my problem is the fact that my life is coming to a standstill. All i do is worry about the next attack, my family,work etc is suffering because of this beast. How do CH sufferers cope with this, or must you just make peace with it? I think that the fact that i am otherwise 100% healthy and have never had any illness apart from the flu, and this makes me feel broken, and i don't like people to know that i have this thing. Anyway, may you all have a PF night.
gerrit brandow <gerritb@cosmopro.co.za>
pretoria, RSA

Hi all, I cant remember if I posted here the last time I went through a cycle or not, but guess who's back :( I just had another one after a year of remission. Worse part is I just moved to this town and havent found a Dr. yet so I dont know when im going to be able to get back my Imitrex or my beta blockers. Hopefully soon. Anyway the beast has left the building and its time for me to try to get some sleep again.
Troy Erickson <ericksontroy@hotmail.com>
Sidney, OH USA

Im 46 and have been suffering with these since i was 20 all the while thinking it was sinus. This week my Dr said it is CH and prescribed Fioricet and it is knocking out the pain big time ! All i feel is pressure now. Hope i dont get immune to it. For years ive done the bang the head thing as well. You all have my sympathy as this has got to be the worst pain anyone could go through. Mine last bout 2 to 3 months and they come on every 3 to 4 years. Good luck everybody and hope you have a PD day. ^ 5
Fred Garcia <Fredmyyster@yahoo.com>
Gregory, Tx USA

Hello, I suffer from cluster headaches in France, for 5 years now. Im in the middle of a new episode of crisis, with a preventive isoptine treatment and imiject (imitrex in the us from what i hear, 6mg). Well, theres something Ive been experiencing lately and that I want to share. I only report for my own experience, but cocaine has a very effective power on an attack. Ive seen it go away several times. Of course the product is dangerous but maybe it is something people should know about, cos for me it works as well as Imiject. Bon courage as we say overhere Jean Marc
Jean Marc <jmdcr@hotmail.fr>
Paris, France

I"ve suffered from migraine headaches, cluster, anything anyone wants to call them for over 5 or 6 years. I have tried 5 neurologists,accupuncture,herbs, you name it, nothing has worked. I have a new internist doctor who is trying something new(for me) maybe some of you have heard of it and so far it is working. In May I had 18 migraines and I take Imitrex 100mg and it ususally works. In June I only had 8 and so far NONE!. I am taking cardizem which is given to patients with problems with the heart. Apparently it's a calcium blocker and it lowers the blood pressure. He started me on 120 mg. over a month ago and three days ago he increased the dosage to 180mg. I don't have a problem with the heart but if it works and I don't have side effects, I am thrilled! Of course if you suffer from low blood pressure you can't use it!. My blood pressure is usually better than normal so maybe its working and also I am being able to sleep and taking 1 mg of clonazapam, because I am pretty anxious over everything ( I am a worrier)Please let me know if you have tried this and if it works. thanks
sara <sarayaker@netscape.net>
miami, fla USA

Howdy my name isMike and I have been suffering from cluster headaches sincce I was about12 or13, I grew up in a small town and the doctors were not up on there cluter info. so I had no idea that there is a difference between migrains and clusters. I am 39 now and just now finding out about these BEASTS. when I was younger i would make this tea, it was 3 tea bags in a 10 onc. cup of hot water then stir untill almost a soup, then i would drink it slowly and ussualy by the end of the cup it was gone,now my stomack cant handle that. any way right now i am i between monsters . I have not had a bout in 1.5 years boy was that nice. as far as what kind of cluster i have I have no idea. here are some of my syptoms,blurred vision allways on the right side, squinting on the same side, extream pain befind the eye ball( like some was is either pushing or pulling on myy eye very hard) the bout usually last about 30 to 45 min. the pain runs from my eye up through my temple to my ear and then down the back of my neck. and after the attack i usually have a mild to severe normall headache untill the next biggen comes along, i usually have a big one at least 1 time a day usually around 6 or 7 pm i found out that vicodinenor percodan or cett dont do a darn thing for them. right now my doc has me on klonopin witch knocks me loopie but stops the pain. i dont know if he knows about CH i will have to ask. does any body have any temp relife suggestions, please please pleas send them to me thank you all. this is a wonderfull site
Mike Neal <booscloud@aol.com>
Scottsdale, Az. USA

I think the worst part, besides the pain of course, is that people just do not understand. 'Six headaches a day?' 'Now your fine?' 'You gonna be like this for three months, what?' No wonder we withdraw from everything, the whole condition sounds like BS. Well, at least WE know whats up, thank you for this site. 2 weeks in 10 more to go.....hopfully!
Godfrey <dolfanx@yahoo.com>
San Diego, CA USA

Hello, I´ve been surfering with this , for like 5 years , and last year, after a new doctor exmine me , he suggested to start go on Propanolol every 6 hours ,(wich is nothin more than propanolol cloridrate) and it´s have been very good to me, once the crisis have been decreasing a lot.altougth if anybody has the happy new of any new discover , please feel free to share.
Daniel Duque <danielduque@uol.com.br>
São Paulo, SP Brazil

Hello all. Excuse my english. I have a CH attacks 7-8 times a day and night. Very good is Prednisone ( 60 mg / day - reduce attacks to 1-2 / day ), but I must use also Topamax ( 25 mg / day ) How are you experience with this tabs ? How is a new generation tabs of Verapamil ? Thanks. Peter
Peter <peter.keklak@centrum.cz>
Prague, Czech Republic CZE

My husband of 55 years old just started having these cluster headaches in march of 2006. we have been to numerous doctors and tried evry medicine they prescribed. He was sent to a neurologist for more test. Narcotics did not even phase the pain, but this wonderful doctor placed him on calcium beta blockers and it is the miracle solution for us. he stayed on his steroids and lortabs until the c-beta blocker got in his system thoroughly-after one week they did go away. but the doc explains clusters come in spring or fall so more than likely unless he remains on this verpamil, the spells will come once a year. right now he has not had one in 2 months - but will more than likely arrise again in spring of 2007. this calcium beta blocker is a medicine which opens up his airways going to his brain. the doc says smoking, alcohol and naps are the main triggers for the clusters. so he is trying to avoid all. his doctor also called them suicidal headaches because thay are so excrutiating- the worst pain a man could ever have. hopefully this medicine will prevent further clusters in the future. when his came on they were as often as 1 every two hour for about 30 minutes. he cried and i cried and 5 trips to the e.r.and drs. I hope he can keep it maintained. this dr. is an angel and I will be forever thankful for knowledge of it. my husband was also told he was having a large number of mini-strokes during these headaches. So do see a neurologist that it up to par with clusters. my man is anew man thanks to him-debbie_elrod@yahoo.com
Debbie elrod <debbie_elrod@yahoo.com>
martin, ga USA

I've had classic migraines all my life, but the pattern changed about a year or two ago and headaches seemed to come and go and would last for weeks at a time. Finally, I was diagnosed with cluster headaches. Maxalt helps better than the Imitrex, which wasn't working anymore. I sometimes have to end up at the ER and get a "cocktail" of Fentanyl, Phenergan, and Toredol. After about 3 of those during a 60-90 minute period, I go home and sleep round the clock and when I wake up I feel like my brain is buised and I'm very fragile for a day or so. I can easily start a new cycle then and have to be very careful. I've noticed that stress, fatigue, sun glare, noise, and lack of sleep all seem to be triggers. My migraines started at age 3 and the clusters started at age 47. Unfortunately, my siblings, parents, and son all share the curse.
Dawn <sister_belle@hotmail.com>
Independence, MO USA

hello...my name is stefanie and my fiance is suffering on cluster headache...it just started for the first time in his life almost 5 weeks ago...since then he is having 2-3 attacks a day...i am really terrified as i have never seen anything like that before...i feel so helpless...he is exhausted the entire day from his attacks and is keeping his medicine with him like a drug-addict...i always try to cheer him up, but he wont let me...he kind of lives now in his own world where he just sits around waiting for the devil's visit...does anyone has an advice for me what the best way for me is to react...? thank you so much..
Stefanie <stef_rott@yahoo.com>
Hamburg, Germany

Hello there, Its Toni again, heading into fourth week of this torture , I have my neurologists researching his medical books while I sit in desperation. I have tried Verapamil, Oxygen, Immitrex, you name it , I have been prescribed it. My peak has hit to my most untolerable point , almost er visit. But I feel as if I went I would scare the crap out of everyone there and wouldnt care either. Oxygen is my dear loyal friend . Immitrex really only cuts the time in a quarter of the attack. Scared to sleep ...exhausted .. want my life back..hang in all I truly sympathize...
Toni <tnpruby@netscape.net>
Stoneham, Mass USA

I've been suffering through what I believe are cluster headaches for the past 3 years and its driving me crazy.
Jeff <snwbrder0283@yahoo.com>
oak park, ca USA

Hi Gang. Great site. Am happy to say have been CH-free for the last 5-6 years, after suffering fairly regularly (twice a year, 2-3 weeks at a time) for 15 years before that. If I knew the secret, I'd let you know. But I'm enjoying it while it lasts. all the best, Peter
Peter <warrington_words@hotmail.com>
Sydney, Australia, NSW Australia

Hello , I am 35 years old, female, and have been diagnosed with CH for 8 years now, unfortunately my world has been a prison for I am going through a cycle, and posting here , well gives me support just knowing I am not alone in this debilitating ordeal. I am on oxygen 7/l min. Immitrex and calcium channel blockers waiting , waitng for this cycle to end. I am uttertly exhausted emtionally and physically.
Toni <tnpruby@netscape.net>
Stoneham, Ma USA

The $%%@& is back and i hope I just got my wife back to sleep. It rips me up to see her this way and I know it is tearing her apart. sometimes the drugs work but she hates taking them the side affects suck
Tim <zulewski4@msn.com>
Kirby, TX USA

Thought I was suffering alone until I found your site!
Pam Greenblatt <pgreen347@aol.com>
Palm Beach Gardens, FL USA

How i hate this devil that has made nightly visits for the last 8 months.
Sue Manne <suem@milpark.co.za>
Johannesburg, South Africa

I am specifically searching for information about glycerol injection to the trigeminal nerve
Lauren Lamb <audiehing@yahoo.com>
Westlake, OH USA

Thank you for providing a site where we are not alone. People do not understand.
Andrew Crichton <andrewcrichton1957@btopenworld.com>
Aberdeen, Scotland

I have been suffering from cluster headaches for 15 years. At first, they were diagnosed as sinus headaches, then a few years later, a new doctor realized I was getting migraines and it wasn't until I kept a chart listing the symptoms, time of day, as well as the day of the week and month that we were able to diagnose not only migraines, but also cluster headaches. That was 10 years ago! I remember going to a search engine and typing in cluster headache and finding absolutely nothing. It wasn't until 2000 that I found this site and finally found some relief knowing that someone out there was suffering the same excruciating pain as I was. Although I was once a chronic sufferer, I now get them every few years. I had tried everything from hot showers, immitrex injections, and epidurals but nothing kept the cycles away more than a few months. It wasn't until '04 that a doctor at the Headache and Pain Center prescribed a heavy dosage of solumedrol (steroid) in IV drips that knocked the cycle off track. The cluster attacks stopped immediately and for the first time I was without any clusters for two years. I am now getting another treatment of solumedrol and I am hoping for another two years at least of no attacks. I don't see solumedrol as an option on this website and I was told two years ago that this was becoming a commonly prescribed treatment for cluster sufferers. I just wanted to mention as something people could bring to the attention of their doctors. Thanks, Aaron
Aaron Phillips <aaron7188@yahoo.com>
Lee's Summit, MO USA

Just stopping by to say hello again. I've been geeting cluster headaches for the past week now. Waking me up in the middle of the night. Pain can be very intense at times. Currently I'm taking percoset & prednizone. Drinking more water and staying cool helps. Another trick - running my hands over hot (bearable) water helps relieve the pain. Sometimes I put an ice pack on the back of my neck which helps.
Alston <Mdalston@hotmail.com>
Wappingers Falls, NY USA

Well, I found your site so yes, I suffer with you. I've been reading alot of the forum topics and I will be trying a few things to abort the next one. It's nice hearing there is some success in this. Anyway, Last night I could feel one trying to hit but I went to the O2 (welders grade)and it never really amounted to much. Well that and 2 Ibu's, 2 Asprins earlier in the evening. I've taken that mix for two days and It's been two days with nothing more than a KIP 2 or 3ish.(maybe just a coincidence). Prior to that it was around 3-4 ibu's and some sinus pill's almost daily but I worry for my liver.Anyway, I feel for all of you and share in it unfortunatly but thanks for the site and I'll keep visiting.
jody <jol67@tds.net>
oshkosh, wi USA

it is painfull
adel <adel_gr2@yahoo.com>
Egypt

Is there a safe painkiller for clusters you can get????
paul <thewebadvice@hotmail.com>
London, UK

I have been suffering with clusters since i was 23. At first they would only occur in the spring and fall. I lived with this cycle excep for one or two years until i turned 31, i visited an ear and thorat dr. and he subscribed SANCERT AND DILANTIN and it worked, within two to three days the clusters were gone, and like the most of you I would have 3, 4, a day lasting from 2 hours to 6 or 7 hours.I didn't have another one until 4 years later, and when back and got my scrip and again they were gone in a few days. Then the cyle begain and it was 4 years again. In 1989 i had some very intense ones, which laste for 2 or 3 months, then I did not have another until 1998, they were very instense and when I went to my ear and noise dr he had retired and since I had not been there is some time they did not have my record so the dr sent me to a regular dr who did not want to subscribe the sansert, but did and we had a hard time finding it, he did not give me the dilantin at all even though i told him that the two togerher worked, he could not understand this, and still did not subscribe it to me. Needless to say the sanscert did not work on it's own and i suffered through them until they were gone ( mine usually last from 2 to 3 months) So i had not had one since 1998 untl about a month ago and I could not belive it.Eight years without one and they i started having ballbusters, my normally happen on the right side, but i have had a few on the left. these started on the right and to my shock this past Sunday night one came on that started on my left side, and was very intense and lasted for 7 hours, needless to say i don't have to explain this to anyone who suffers from them. I do not have a gun in my house because of these clusters, because Sunday if i had, i would not be writing this right now. My head was sore all day yesterday just from the intensity of it. i had a mild one last night that lasted 2 or 3 hours and woke this morning with my head still sore, so i took an excedrind migrane and after a few minutes the soreness wore off. I am suppose to be working but before i could get out the door another one came on, it is not intense and fill like it will be a mild one. I feel for all of you and no what you are going through. what makes me mad is when you tell people about them, they say "oh you have miagraines, I have them too" i tell them i would trade their migraines for these anyday. They said all come on they can't be that bad. and i respond by saying i would love to give you a very intense one for about an hour and then you tell me. I don't anyone to have these, but it really makes me sick that they think they are just a normal headache. So like i said sancert and dilantin worked for me, and I tried it all. But these days they do not want to subscribe sansert for some reason and as i said earlier the dr i saw would not give me the dilantin with this, even though I told them that is what I had been taking for the longest time. Iwish oy all well and no the hell you are going through. If you have any suggestions for me I would appreciate any comments. Thanks for reading this and if it helps please let me know, or your dr. i feel sorry for each and everyone of you has i sure you do for me. I cannot believe that no one has come up with something that can give us some relief. Take care.
JIMMY HANNA <jwinsc4@YAHOO.COM>
FLORENCE, SC USA

Hello All. I found this site and have read many of your postings. The last time I suffered from the Boogie Man (The Beast), was back in the early 1990's before the internet was known to me. I was diagnosed with Clusters way back in 1986. I tried everything known to mankind to ease the intolerable pain behind my right eye, from running hot water over my hands, to acupuncture with no relief!. I haven't had an episode for over 10 years and had forgotten about the Boogie Man until June of 2006. The Boogie Man awoke from his slumber with angry malice like a jilted lover, as if to say, "Remember me?" Thought you were rid of me didn't you! I'll show you what it is like to be forgotten and cast away after being so much a part of your life. All those nights we stayed awake together. How dare you forget about us." My life is a complete hell once again. I can tell you folks about this pain but you all know what I am talking about. No need to explain it to you. I try explaining the pain to my family, but I dont think I can paint the picture and frame it well enough with words alone. Then again you all know what I am describing. I am a police officer and drugs are out of the question. I suffer in silence. I must shield myself from the painful light of the sun or a suddenly or carelessly illuminated room where I sought shelter and seek a dark cool place to pace in agony till the Boogie Man tires of his torments and slithers back into nothingness. I know he is still there I can feel his presence as if he has rolled over in his sleep and I fear he is about to awake, but he does not. It is like watching a scary movie. You know the ugly demon monster is going to jump out just any moment. You are almost relieved when he does so you can deal with him until the next time. I have always been a physical man, strong of limb and mind. A soldier and a cop afraid of no one including the hardest of street thugs. The Boogie Man I fear as I have no weapons for which to kill him.
RUSTY <rustonhpd@aol.com>
houston, tx USA

Hi there fellow clusterheads,Ive just found out for sure that these headaches, that i had suffered from 10 years ago "are" indeed clusterheadaches. I always thought they were migranes or that i was bordering on a stroke. It's been 10 years since i had them and 2 weeks ago they started again. I thought maybe it was something i took but i went to the doc and he sent me to hospital and this great Doctor said Oh you have classic clusterheadaches symptoms "classic"! I said has anyone suffering from cluster's had a stroke he said no...Phew! What was even more wonderfull was finding this site that he gave me info from on all the things i need to know! Thank God for this site! Last night i went to bed and at 3am! It woke me up, i started hyperventilating till my hands tingled and after 30 minuets or so it left as quickly as it came, i went back to sleep (i was lucky). Then at 5 am it woke me again, this time most serverely and as it got worse i felt better cause i read that they get worse that cresendo effect, you know what i mean! Then i thought my goodness what is the peak its just getting worse, it feels like a hot iron rod is being pushed into my right lobe. I always grab for my neck and start massaging it! Not that it does much. Then my right eye starts weeping and im thinking oh good this is gonna be over soon and it gets worse, and i start to pray. God please help me, please help me, begging the Lord. Im sucking air so hard i can feel a film all over my lips, my right nostril is blocking, my limbs are tingling and i can feel that lateral pain from the front lobe right through to the back of my skull. I sat up and was rolling the back of my head on the walli could feel a twitch on the left back side of my skull when i found "the" point, that it traveled to from the right front to the left back. Like a rod from right to left of my brain, front to back. Then i thought i cannot bared this i would rather be dead then live like this! Then i felt god come to me and he said put your hand in mine and i did sort of made the gesture! Then i bawled my eyes out and said thanks or coming i love you god. Then the pain was still getting worse and i copuld feel how tight my neck was! So as best i could i tried to relax it and stop fighting the pain and let it do what it wanted & then the peak came that i had been waiting for and i felt a wave of warmth flow from my head . The pain was going and i felt a warmth flow to my right arm . Then the most peculiar thing, I could hear either falling rain like a downpour or the sound of rushing water. Yet i dont live any where near a stream and it certainly wasnt raing. I said thank you God and rolled over, fell asleep, then dam it 7am brought the signs of another attack. I new it was comming i jumped out of bed ( no way i was gona just try and push through this again ) ran to the kitchen and took 2 500mg tablets of disprin with 9mg of codine it it. Thats 1000mg of asprin disolved in water on an empty stumoch backed up with anotherglass of water & back into bed and it went in 5 minuets, the next thing i know it was 11:30 am and the coast has been clear since, yet i know its lurking, just letting me know its there waiting!Yep Asprin works best for me yet i have never tired anything else but for me it has to be taken at the first sign of it no matter how distant or insignificant cause i know how it work now, like a snowball, gathering from the farthest point in my brain till it hit the front full on. Praise the Lord asprin worked for me "This time" God Bless and Good luck Grahame
Grahame Smith <zenbaxter@iprimus.com.au>
Sydney, NSW AUS

Hi there!I will start of with saying sorry,my englisch is not that good but I will try my best.My name is Dennis Linders and I am living in the netherlands {Amsterdam} I suffer from cluster headaches for 5 years now.I just came back from the hospital where I stayed for 2 weeks because my clusters where to painfull and to often{9 a day}I received O2 tanks at home that only help if I use it realy early but most of the time I wake up with a painfull head and does O2 not work, then I use the injections or the nose spray.The docter gave me verapamil and baclofen and the increased my atacks from {9 P/D} to {2 P/D}but this is the thirth time for me in the hospital {and the verapamil} and I know it works for a few weeks and then I wil be back at the beginning again.I already lost my job as a flight attendant and lost a lot of friends who think its just a small headeach and think that just a asperin will do the job.I got depressed olso ,so I received more chemicals for this problem as wel.I am tired of explaining over and over again what my disease looks like and why I am always so exhausted after a few atacks.at this moment my life is like a bigg hill but I cant reach the other site of it.We will see how long these chemicals will work for me,until that time I only can hope and pray that it will stay with 2 attacks per day,and keep some hope for a pain free life and some respect from familie and reletives, because I cant do this alone. regards from a cold amsterdam dennis
dennis linders <dennis.linders@planet.nl>
amsterdam, NH the netherlands

I am very thankful to have found this sight, now I do not feel like I am the only person on this earth that goes thru this. I have chronically suffered the past 6 years. I have been to 6 different specialist, none of which was able to diagnosis me. I have given so many different meds, none which helped, with the exception of Klonopin. Klonopin is an anti-seizure med. It worked for about 6 months with an occasional break through but helped for awhil. I feel so sorry for my family as they watch me go thru this. They want to help, but can't. A dear friend of mine suffers from the traditional migraines, but told me that to choose between the two evils, she would perfer the traditional migraine. I feel locked and trapped, rarely going out because I know it is coming, it is just a matter of when. During the day I am fine, it is when night fall hits, I am terrified and to scared to go to sleep. There are a few things I know of that happens to me that will be bring on my CH, one is lack of sleep, the other is not eating when I should. I do know that for me, eating very small meals through out the day helps me. I am surprized that I am not bigger than my house by now. I hope and pray for all of you who suffer through these, I know and feel you pain and can only hope that more doctors will recognize this and perhaps come up with a solution. Until then,I pray you have a pain free day..
M <nutz4mastiffs@aol.com>
Oxnard, CA USA

Hi, Just got rid of massive head buster, thank God for Imitrex. Woke up with a real killer, as bad as I ever had. I'm still sleepy but I had to look around the internet. I found you folks and found a few laughs. I feel better now after finding this site and don't feel alone. I'll come back tomorrow and register. Good night. Thanks guys.
steve <otherone58@aol.com>
bronx, ny USA

Hi, I started with cluster headaches two years ago. I was woken at 2am, 1 side of my face felt so swollen and the pain was unbeareable. My mum was visiting from America and was asleep in the next room, she came in asking what was wrong, I couldnt speak just rocked and cried on the edge of the bed. Now 2 years on June has started and so have the headaches and yes my mum is due again. The doctors here have given me beta blockers to take every day and co-codamol for the pain, take 2 and i'm sick so 1 it is. They said dont come back till you've given them time to work. Its ok for them to say that, its not their head trying to explode. Thankyou for this site, it has made me realise i am not alone with a pain so bad you feel that you are.
Tracy <sadiesuk@hotmail.com>
lancashire, Uk

hello! I have barely survived one cycle of cluster headaches and am soooooo fearful of another cycle. my last one started in july of last year and continued thru to the beginning of september. i am so glad that there is a place to go where people understand the unbearable pain because it seems almost impossible the explain. Just reading thru the information makes me cringe with anxiety that i might get them back but also know that there are people there that can understand and support me thru it. Ive used everything possible and the one thing that really seems to work is oxegen. I think my doctor had given me every narcotic known to man including morphine and none of it touched the pain. Please e-mail me ---could use a friend with the same problems ive had
ryann <HRCCF@aol.com>
east helena, mt USA

Hey, Back after 10 days, still suffering am on my 4th week, Have been doing th oxy treatment. some help by it is like I need to be on it 24/7 to really get relief on a constant basis. have only slept maybe 10 hours in 10 days. Starting to look like a zombie. I pray for all my CH brothers & sisters to have painlees sleep, So pray for me too. Wayne
Wayne Greene <greenego@comcast.net>
Hendersonville, Tn USA

Hi. I'm episodic, and have gotten these things since I was 13. I'm 53 now. Just past the middle of the cycle now, with two weeks to go. When I was younger, my cycles were six months apart. Now they're three years apart. I elected long ago to face my CH episodes unmedicated, mostly because I'm afraid to mess with a predictable recurrence that I know I can deal with--who knows what would happen if I started fooling with my internal chemistry? Would they get worse? Become chronic? I don't have much confidence in the medical approaches to CH. My (aging) body seems to know what it's doing--the period between episodes is getting longer and longer. My best to all of you.
George <kestrel2@cableone.net>
Boise, ID USA

I started getting CH's about 5 years ago, I am currently 30, and just like all of the other reports thought I was going to die. Numerous nights of waking up to them and there is nothing worse than the pain. (Child birth included!!!!) And all of you mothers out there know what I am talking about. I was referred to an eye Dr originally and she diagnosed me by saying that I either had CH's or a brain tumor. The latter seemed more reasonable that any type of headache. I was put on Imetrex nasal spray and this worked wonders for me it didn't make them go away just eased the pain. My second attack was when I was 6 months pregnant with my daughter, 3 years later, and I was unable to take imitrex due to possible birth defects. I have never felt so desperate and powerless before in my life. I was prescribed Lortab and sleeping pills. (didn't work) Into my 4th night of constant attacks and no sleep. I couldn't take it any more and was admitted into the hospital and put on a morphine drip. (again, didn't work) Knowing what I know now I wouldn't have waisted my time on these ineffective attempts but, hey, we all know that you will try anything out of desperation. It was like clock work, I would get them everynight about 3 hours after going to sleep and the occasional one during the day. I nearly lost my job due to missing work due to utter exhaustion. There are very few people who know and can even comprehend the severity of CH's. To try to explain to someone that has never experienced them how bad it is, is impossible to do. I started getting migraines when I was about 5 or 6 years old and would prefer to sit all day unable to speak in between vomitting, than to go through one CH. A little over a year ago my sister was diagnosed with CH's and has battled with them just as I have and I can honestly say the only good thing about it is that we can understand what the other one is going through like no one else can. Through dicussing this with family we have recently found that my great grandmother suffered from them as well, for years, but back then they couldn't diagnose them. Makes me wonder if it is just the way that some of us are made and not our environment. Through all of the different treatments my sister and I have tried nothing has worked. My sister did say that O2 helps if you can start it right when you feel it coming on. This is hard when they come at night. Anyway I found this site and felt compelled to tell our story and hope that someday soon they will find SOMETHING that actually works with out having to worry about all of the side effects that the medication may cause. Best wishes to ALL of US!!!!! Take care.
Gina <breezy_bug@yahoo.com>
Helena, Mt USA

Paris june 7th 06 11:23 pm local time; Here come the beast; I will try to beat this bastard. Shiiiii it gone a be a bad one. How lucky i am today; 11:32 pm and it gone away!! (strong but quick). I drank water, got hungry, walk in my apartemnt, took 1 tablet of Prontalgine(paracetamol 400mg, cafeine 50mg), 1 of Nurofen (Ibuprofene 200mg) togather; my triptan was off date!!! What did work i can't say except if the beast want go to sleep early to-day.... Wish the same to all of you, and better a complete remission. VERY BRGDS.
Thierry Blondeau <t.blondeau@free.fr>
Paris, france

i havent wrote on this website since i got a response from someone who acually is trying to do something about this f ing nightmare dr andrew sewall .forgive me if i dont have the spelling correct of his name but dr im talking to you about your clinical studies and interested in participating on pslicybin . i am a super chronic sufferer of these headaches and expermented with pslicibin and worked wonders sometimes. im sick of going on this website and hering the same old bullshit . it f ing kills me that with all the technology in this world they meaning these asshole docters with most of them dont even know what a clusterheadache is cant come up with a cure for this nightmare. as you can tell im pissed broke and totally drained goodluck to all you sufferers peace out.
jerry newman <sebatian642001@yahoo.com>
verobeach, fla USA

I can control myself anymore, i go crazy, it's going on 24-7 for a half year. The doctors can't find anything. Now finaly a CT scan.
W
Nederlands

So surprise,if i can say unhappyly for then, to see that there are so much people who similarely fell what I fell when I have a crisis and knock my head on the double glass window of my living room in the center of Paris. That at the same time may be are you doing the same in your country in an other part of the world. That this awfull pain is approximatively the same, with no real explanation and reason, come and go, may be live you alone for few month or year if lucky you/I are and then come back; or! may be disapear and this is what I wish to all of you. Sorry for mistaxes, my writing english is not so good! Best regards from Paris France
Thierry BLONDEAU <t.blondeau@free.fr>
PARIS, FRANCE

I am so surprized at how many people are suffering like I am right now. It is 5am and I have been up since 1am with the worst pain! I found this website in despiration! I think I am going to go crazy if this pain does't stop soon and I can get some sleep!
Sharon <ssweet@centurytel.net>
Cass City, MI USA

thank you for all info, i've been a sufferer for 15 years and still go thru it every year so i keep looking for all the help i can.
Wayne Greene <greenego@comcast.net>
Hendersonville, TN USA

Back again. Has not been that long since I was in here reading everything on this site. Well I decided to lay down. That is where I went wrong. Now I can not go back to sleep. Not sure if it fear of the return or just not tired anymore. I find that I only sleep a few hours a day or night whenever I can. Imitrex helped at first but now seems to be useless in this battle. The worst part is that I had been seeing a nuerologist and then was transferred from the east coast to the west coast. The hospital were unable to find my records to send out here. So now I have to start this process all over again. I was on blood pressure meds untill I had an attack and tried to use them to end the pain. All that did was cause me more problems. I did not know that the beast caused you to be depressed and then to add Beta Blockers on it as my doctor calls them sent me in a downhill sprial that almost took my life. I just hope that someday they will figure out what causes them and how to stop them. Well I guess I will stop complaining. Thanks for being here.
Ron <ronald.whaley@sbcglobal.net>
San Diego , Ca USA

I am a sufferer of cluster headaches. I did not really understand most of what I was told until now. I found this site because of an attack. Now I have a place to go and get advice when I need it. Thank you for your information. This has also helped my wife understand what i am talking about.
Ronald Whaley <ronald.whaley@sbcglobal.net>
San Diego , Ca USA

I'm tired of being a drug seeker in my M.D.'s eyes. Just spent 4 days in the hospital getting I.V. ergotomine, but didn't stop the cluster! My internist felt I needed a Pych. consult. Love the Kipp's pain scale. Went to e.r. and they just left me alone till the headache finally passed. Compassion? Not here! Any ideas about where to get help, please let me know! Thanks and good luck all
Mary Gay McCormick <sebrimg@charter.net>
Weldon Spring, MO USA

I have suffered from CH for nearly 4 years now. Longest period without an attack has been 2 weeks. I am still waiting for my "cluster" to end.
Clifton Burris <caburris@ev1.net>
Cedar Park, TX USA

going on 8th week with 7-8 aday now for about the last week. lasting from 30 minutes to an hour. thought i was alone. comforting to find a place where people actually know what i am going through and can understand the pain. thanks
randy <rndytwigg@netzero.net>
yazoo city, ms USA

Hi all, this is my third bout with Clusters, with about three years between spells. I have had migraines my whole adult life,(numb fingers, Lightning bolts in my vision, the works). If anyone asks "is that like a migraine?" tell them that a migraine is a papercut on your hand, and a cluster is a knife in the gut. (I know!) Mine are purely stress activated- work, personal, marriage, money, etc... Short term high stress gives me a migraine, prolonged? Clusters. Sound familiar to anyone? My first time with clusters was back in '91 and the Doctors said it was TMJ. They gave me muscle relaxants and after a week the headaches went away. Duh, after a week of those little pills, I had no stress at all. (I swear those things had vallium inside). My question is how to I talk to my wife these headaches? She freely admits that she sees sickness as a sign of weakness. I tell her that stress is creating these dang things, but she refuses to beleive that I have that much stress and there must be "something wrong" with me. I am taking more than "prescribed" dosage of Imitrex per day because of the four attacks per day lately, and she is worried I might develop a heart condition because of it. What is the reality about the risks of Imitrex? Do I stop taking more than two doses per day regardless of how many attacks I have? Even when it knocks out 85% of my headaches in ten minutes? (injectable is a little faster than the pill). Also, I think it's difficult for others to recognize what we are going through mainly because there is no visible symptoms. ie: no visible cuts, bruises, knife in your gut, etc. They simply dont see anything wrong. "Oh, you have a headache? So what? We still have work to do." and "just go take a mydol and come back to work." nice huh?
JeffGranzin <JeffGranzin@compoium.net>
Rock Hill, SC USA

Iam so glad that I found a website that deals just with clusterheadache sufferes. I've been back and fowards to the hospital and all the meds the give me works for a day or two then I be off the suicide intention agian. I've been on benedryl vicodine excedrin tylenol extra strength. all types of head ache medicine. but nothing really works for me.It's a pain for me. i just have to lay down pace around the floor try to make myself throw up to get some of the tension off the right side of my head which really doesn't work but in my case it makes me feel a lil different for a least two minutes then the pain comes on strong. i have to get all the way undressed and turn the cooler on 5o degrees and actually lay there like adam under the high speed fans to actually cool down and fall asleep after three hours of undescribable pain. i ben thinkinh of having this surgerey done but i need to know have anyone out there had it done before i heard it was very rare. but since this episodes has to end for me iam willing to try anthing thats prevenative in my case cause it hard trying to work and a cluster comes on to visit. in the surgerey i heard that its a simple one all the neuro does is make a small inceasion and detaches the nerve that sends pain to the face. but for me i want to hear fron someone that has had this done befor so i can know what to expect. because i cant keep dealing with this its making me go insane i never knew pain could be this horrible. its making my love life go down cause i dont want to be bothered with anyone. no phone calls no t v no light no barking dogs no knocking on my door is turning me into a hermit and this is not the way iam . i cant take far away trips in fear I'll have to abort them and return home its scary so can some one thats in the same shape find and contact me so i can understand this alil more better cause iam sick and tired of running to the doctor.When all they want to do is throw you on meds.
stuart rene <magnifyme3@yahoo.com>
bakersfield, ca USA

I am back again. My first post was April of 2002. Since then, only a couple of weeks of 7's (not great but better than multiple 10's for 3 continuous months)each year in early spring. Until this year, they usually crept up on me in late Feb or early March. This year they started in early May??? Excedrin Migraine is all I take. Again, they are only 7's and E.M. takes the edge off. Taking the edge off of a 7 is like cheese cake after a T-bone, when you have had 3 months of multiple 10's. This site is wonderful. My wife found it back in 2002 when we were at a loss as to what was happening to our lives. Tell everyone about it. As you know, you will never know when the next person you care about starts getting clusters. I thought I was going crazy, nobody could understand the pain. If I win the lottery, I will definately be donating big bucks to this site and research.
Mike <michael.a.champion@pjc.com>
Bellevue, NE USA

Hi! Suffered for years, diagnosed last week. It is to know what's going on, so I can seek for help. This page is great, there is atleast a couple of good ideas that I'm going to try. But now it's time for a couple of glasses of water. Back to you later.
Harri Tiihonen <harri@vantaalainen.com>
Vantaa, Finland

I've had clusters for more than 30 years. God bless all of you who are suffering. My good news is that the older I get, the fewer I have. They are now spaced several years between outbreaks. Hang in there, all of you. Time may also help you!!!!
Don
USA

Great web site. Thank you very much for creating and maintaining it!!
Bob Beard <fasbbob@aol.com>
Orlando, FL USA

I have had these headaches for over 2 years. I think the longest I have gone without them has been a week. They are so painful. I am on 3 anti depressants. I am anemic and am exhausted all of the time. I also have a few drinks at night to help with the pain and put me to sleep. I feel foggy and like I am in a living hell. I cannot imagine anything worse. They pain is on one side of my head. My coworkers make comments about my eye on that side and the swelling. I had a massage yesterday and she said that the lymph node in my head on that side was swollen. I just feel like I have tried everything and am so worn out and frustrated. this is ruining my life and I cannot take it anymore.
dawn <dplass@alltel.net>
hudson, oh USA

Hello, you all. I have been reading over this entire site and it's message board for the past couple of days while I fight another exhausting battle with "the beast." I, too, am a "clusterhead," so it would seem. While I would love to say that I am excited to find so many people that understand my experiences, it is awful to see just how many people actually do share this pain. I am just a single guy of only 26, but I have battled the beast for about 7 or more years now. However, after reading many of you guys' (and gals) experiences, it would seem that I am rather lucky in that I have long periods of remission up to a couple of years. At least, I do for now (I hate to jinx myself). My battles with the beast began as a single bout one morning on the way to work. At the time, I figured maybe I was just way too stressed out, so I delt with it until it was gone (about 1.5 hours). Following that, I hadn't had any experiences like it for about a year. Then, of course, the beast struck again. This time, I decided to hit the medical center to see what the problem was, and like many of you, it was misdiagnosed as being a sinus infection. About two days later, I had another bout, and I returned to the medical center to demand a better answer. Luckily, I met a new doctor whom had experience dealing with patients with such a "rare" problem as CH. At that time, the doctor tried an Imitrex injection which worked nicely for me. At that particular doctor's visit, I was provided with a prescription not for the Imitrex (unfortunately) but for another drug (which I can't recall the name of) to take daily as a preventative medication. Since my cycles seem to be relatively short-lived in terms of days and weeks before a long remission, it didn't make sense to me to keep taking such a drug. Likewise, I found, through some research that the particular drug could cause damage to certain organs such as the heart and liver. Put simply, I quit taking it, and held onto my Imitrex injections for a "rainy day." Well, I got lucky for the most part, and I hadn't had any visits from the beast until about a year or so later at which time I took one of the injections and all was good. Another year or so passed which brings me to my current battle cycle with the beast. This time around, I took the remaining Imitrex injections (which were about 3 years out of date and still worked for those who may be wondering about that). However, I ran out yesterday, and had a calling from the beast again today. Having problems locating a pharmacy within reach that carries Imitrex in injection form, I settled for the nasal spray which did nearly nothing for me. In general, my CH come as follows: I tend to get them on either side of the head, but usually on the same side during a cycle; In the past, my CH came about once a day for a couple of days before stopping entirely for a year or more (though this cycle included a 2-in-a-day episode); All of my cycles have seemed to take place during the spring to early summer (between April and June). Anyway, thank you all for "listening," and the webmasters and others for creating and contributing to this site. I will definently be revisiting, as will the beast, I fear. I am looking forward to trying some of the other possible methods of CH abortion/prevention as well. I wish you all the best.
Anthony
Victoria, VA USA

I am in my third round and this time tried oxygen for the first time. It worked within 5 minutes. No one in my community seems to knw much about CH - so it took a while before I could find oxygen at the level necessary for use at home. This is my first episode that has lasted longer than 6 or 7 weeks; I am in my fourth month. The predisone that worked the other times did nothing for me this time. The imitrex, for me, brought on even more headaches (I went from 2 a day to 5 or more) Going to bed made me feel like I was crawling into my coffin - my oxygen tank gives me such peace of mind now - I know I can abort an attack without having to go through so much suffering. I also wanted to let people know that research has now found that SLEEP APNEA may trigger the clusters and would be worth looking into. I am going to try and get into a sleep clinic to see if I have this affliction - typing sleep apnea and cluster headache into a search bar will bring you to some interesting sites.
Barbara <vtmtn1@msn.com>
Guilford, VT USA

I found your site yesterday while searching for more information on cluster headaches. My husband has been suffering for four years and has often complained to me that there is no way of expressing what he goes through. After I found your site and read the testimonials, I feel that I have a greater grasp of what is going on when he is in the throes of an attack. I printed them out and brought them home and read them to my husband. He smiled, and said that I had no idea how good it felt for him to hear that some else actually understands what he deals with. This site let my husband who has been struggling through doctors, neurologists, MRI's, CAT scans, ER visits, people's looks and derision- you let him know that he is not alone. Thank you.
Leanne <travelinfools@juno.com>
Ephrata, PA USA

Hello folks i have been suffering from ch for 20 years i know you must have heard this before but IMITREX injections work for me everytime! started taking it about 8 years ago. what a wonder! good luck to you all
mitch lutzke <dispatch74@yahoo.com>
portland, me USA

C/H's still pounding me to tears, dont know what to do, cant get any sleep, afraid to go to bed at night. Now they are becoming more frequent, even during the day, which is keeping me from working, and that's not good. Still using Imigran nasal spray when attack starts, and now using Tramadol 200 for pain relief. Dont know what to do, today had attack so severe i cried in pain for 2 hours before going to the Dr's, not much he could do when i have to explain what a C/H is. I,m so tired, had 1 nights sleep in the last 2 weeks, must hang in there and all i can do is put up with it for now and hope it doesn,t last to much longer. Until next time, Graham
Graham Phillips <grahamclaire@iprimus.com>
Melbourne, Vic Australia

I'm happy that this site exists, my husband suffers from cluster headache, and it's hard to explain this pain. He is not from the USA, so everytime he went to the doctor it was difficult, since he did not know what it is called here. In Itay it is called "Cefale a Grappolo", after during research on the internet, I finally find the English name for this pain. When I came across this site, and started to read the experiences of several people, I said to myself this is exactly what my husband goes through. My heart goes out to evey person who suffers from Cluster headache and it's good to know that it is being more known, so more research can be done to cure victims from this torture.
Anna <saint71@verizon.net>
Wyomissing, pa USA

Hello. First of all I'd like to say how sorry I am that so many people are facing this kind of pain. I have been married to a wonderful woman for 22 years. We are from the midwest originally and moved west in 1989. My wife is a TMJD sufferer. Chronic headaches, neck and back pain, fatigue due to lack of sleep, short term memory problems and vertigo. Pain ages a person. As silly as it sounds I believe that when caring for a loved one that has pain issues that can so disrupt life, the caregiver himself is also subject to that same aging process. I plan on rummaging through the archives to see if there is anything out there in this community that may educate me to the point that I can help her. If anyone has any ideas, I'd be happy to hear them. The TMJ surgery was performed in 1984.A silicone implant stayed in place for 5 months and had ruptured upon removal. She isn't on any meds now. HELP!
Terrance Peterson <tlpete@earthlink.net>
Sequim, WA USA

I have been suffering since 7th grade and I am 41 now. Just have been told of clusters a month ago, took your quiz and cried because I fit the criteria. Wanted to add thoughts of tearing out teeth and ear during attack. Thanks for making feel like I fit in somewhere. Sisters thought I was making everything up. Now I know I'm not totally crazy.
Colleen <colleena_r@yahoo.com>
Gainesville, FL USA

I have had the clusters since my early 20's. I am now 31 - I moved to VT 2 years ago and was in remission. I thought the move had rid the beast, but on May 1, 2006, they came back. Usually, I only get them every night, one hour into my sleep cycle - this time, in addition to the nightly routine, I am getting an episode at 5:00 pm as well. I use Imitrex and I think it cuts the duration in half (from about 1 hour to 30 minutes) I am going to try oxygen next.
Michael A Richards <mar768@hotmail.com>
shelburne, vt USA

into my 6th week of ch. 49years old all the sudden i have these bad headaches. went to see doc, had one right in front of him for 20 min he watch me. then after it was over gives me a inhalant. says this should help. bastard could have givin it to me 20 mins ago. mine start at 9 oclock and its 10 tell got to go get the ice packs ready.
steve <litfuzzy@totelcsi.net>
sedan, ks USA

My wife suffers from clusters and it is very frustrating to have to just stand by and watch. I'm glad to have found this site, now we both know we're not alone.
Steve Rivera <srivera396@yahoo.com>
Amsterdam, NY USA

I haven't been in this site for some time--I have not had a CH in over two years! Drink lots of water daily and most important, for me anyway, no artificial carbonation. Stay away from the soda. One can of soda one day woke me with cold sweats that same night. Drink- none, zero, zip, absolutely no artificial carbonation. I read about the water and carbonation here. I'm hoping they are gone for good. I think they are.
CJQ
NY USA

This is a very well done and useful site for CH sufferers. I shall recommend it regularly for my patients (I am a neurologist, headache specialist, in Oklahoma).
Marc Lenaerts, MD
Oklahoma City, OK USA

I have had cluster headaches every 1-2 years for the past 24 years. Typically my cluster periods last 4-6 weeks. No treatment has made much of a difference and I have tried most. The best relief I have found is taking a shower and letting the water jet directly on my right temple or walking up and down my driveway. Since most of my episodes occur at night I believe the cool night air might help or it could just be doing something that takes my mind off the pain. I just started another cycle a week ago and the worst is still in front of me. I just found this site and found lots of good info here. Thanks to those who host and manage this wonderful source of information. "Endeavor to Persevere" Chief Lone Watie from "The Outlaw Josie Wales"
Andy Taylor <andy.taylor@pwrops.com>
Louisa, VA USA

Mandy--and any one else reading--I'm also in "remission." My neurologist (at the Headache Center in Brooklyn--there's also one in White Plains and Manhattan, but they don't take my insurance), put me back on PREDNISONE, 10mg, but more slowly tapering down (6 per day for four days, 5 per day for four days, 3, 3, 3, 2, 2, 1, 1) plus the Verapamil (240mg) twice per day. She gave me some samples of Imitrex injections, which I find very effective, but I haven't needed to use them since my first dose of Prednisone. The true test will be when I ramp down the dosage, but I'm betting this will break the cycle. She really didn't seem to feel that going back on the Prednisone (after the short, ineffective tapers) posed a risk for someone otherwise in good health (something to keep in mind if your headaches come back). Good luck!
Lucien
New York, NY USA

what can i say nothing helps and i dont know what to do
Cornel Gouws <cornel@lambsonshire.co.za>
Johannesburg, GP RSA

As i type this another cycle has just began, it's been 12 months, last time it put me in hospital, that was when a doctor finally worked out what was going on. "Cluster Headache", never heard of it, neither had many other people i spoke to. For the last Fifteen years i put up with it, i still am, only now it has a name. Not sure what causes them, but i fear going to bed at night, cos you just know the demon is coming. Tried a cocktail of drugs (prescribed) now i use an Imigran Nasal Spray single dose, and two pain killers and i can normaly go back to bed within an hour, and then get up and go to work. Thank you for this opportunity to share with other sufferers. No one i know could believe what it feels like.
Graham Phillips <grahamclaire@iprimus.com.au>
Melbourne, Vic Australia

I started with the headaches fall 04. I had no idea what I was dealing with, except I could not move, nor be around light, and the only cure for me was trying to rock myself to sleep. I knew though it would hit when I woke up. That cycle lasted around 2 weeks. I've been lucky that I usually get 'hit' every 3-4 months. But those 3-5 days are the longest days. I REALLY hate: the runny nose, blurry eye (usually right eye), uber-light and noise sensitivity, and the fact that people DON'T believe you! Or they say, "did you take anything?". Yeah, right. Now, for my eye-ball. The pain goes from moderate eye-ball squeeze to searing poker rod. Right now, I'm trying to make it through a work day (after a late start) and I can't even focus. And I feel like I'm leaning to one side! Thank you for being here. It's good to know someone believes me.
Julianna <Julileber@hotmail.com>
Akron, oh USA

My name is Jeff and I have had CH for 25 years. This site is new to me.I dont remember the last year that I did not have any cycles. My cycles usually are Mar-Apr and Sep-Oct. Unfortunately for me ,I am going through one of the worst cycles that I can remember. My cycles normally last 2-4 weeks butthis one is going on 6 weeks. I have tried many different treatments or medicines. It seems like when I find something that works, it will only work for a few cycles and then the beast becomes immune to that and I have to try something else. Oxygen works for me about 75% of the time. I read a lot of everybodys stories and can relate with them. About the first 10 years nobody believed me including doctors. I am amazed at how little the general public knows about CH.
Jeff
usa

WHITE TIGER BALM = INSTANT RELIEVE hello all, I'm a 25 year old student, I'm currently in my 8th cluster already, it started when I was 18 and since then my study has gone down the drain. Luckily I'm close to my graduation now, which makes this latest cluster all the more terrifying, as it might prevent me from graduating this year. However, to all my fellow sufferers I have found THE INSTANT RELIEVE for cluster-headaches: WHITE TIGER BALM. Even though red tiger balm is supposed to be stronger it is the WHITE TIGER BALM that does the trick. I'm still in the beginning of my cluster, so the headaches aren't very severe yet, and I can handle it with WHITE TIGER BALM alone. However, when you get to the stage that the bastard is waking you up 5 times a night, then you'll definitely need painkillers as well. The problem with painkillers is that it takes up to 10-15 minutes too work, and we all know that that means 15 minutes of hell! But WHITE TIGER BALM takes the pain away (or numbs it) INSTANTLY, so you can actually wait for the painkiller to work as a normal human being, without too much of the usual screaming and crying. To use tiger balm, rub it over your temples and forehead of the aching side and be sure to also put some under your nostrils (and neck if it works for you). The benefits are that it works INSTANTLY, and that it is a natural, cheap and above all EXTERNAL ANALGESIC, cause I don't know about you guys but I rather dislike taking up to 10 painkillers a day. And since it is external, and everybody visiting this site is probably quite desperate, it doesn't hurt to try it. You can get it for 2 bucks at most pharmacies. I hope this helps, and may it be the miracle worker for you, I am not claiming that white tiger balm is THE answer, but it is the only INSTANT relieve I know of. Most of the painkillers kill the pain for me, but none of them is as quick as tigerbalm. Also, WHITE FLOWER OIL and GREEN OIL, (you'd have to ask an Asian person for the real names or availability) have similar effects, yet are not as strong nor as effective as the white tiger balm. finally, although I can't claim that this actually works, in order to shorten the cluster I always (try to) refrain from alcohol, cigarettes AND chocolate and cheese Thanks for listening and may you all find peace in your mind! with all my sympathy, erik lebens leeb@mail.com *please e-mail if my information helped you or if you know any other instant miracle drug or info that might help. make sure to include cluster-headache in the heading, otherwise it will be deleted as spam* thnx
erik lebens <e.lebens@student.unimaas.nl>
Born, The Netherlands

My name is Mary, I am 32 and I have had migraines since I was 14. For the past 5 years I have been dealing with these different type of headhaches. I have 3 or 4 a month that last up to 4 days, constant!! The pain is undescribable. It is always in the right eye area (my sister says I look like an alien because my eye is all swollen and my right side of my face droops}. By the 4th day I cannot take it anymore so I end up in the emergency room to get a shot usually of demoral and phernargen. I have tried imitrex and relpax all that does is stop the pain for that day but than i'll have them more often. I can take fiorocet to dull it a little but then I have rebound headaches. To go to sleep I have to pull my hair or squeze my head really tight. I have a 7 yr old daughter and she will cry with me and pray for me when I am having these. I really cannot take them anymore. If they would just last 1 day every now and then it would be different, but mine last 4 days straight every time! I have had the MRI's and CAT scans, even a spinal tap. I want to be able to read a book with my daughter when she asks me to. This is more than a beast. It has really ruined my life!
Mary Kay Carter
Jesup, GA USA

Had been up on this site years ago, but just pretty much silently accepting my cycles. Use Verapamil/Imitrex (nasal)/O2. This past cycle has been wierd. Going a couple of days with nothing then get one night where I get hammered nonstop and I am completely worthless the follwing day. You all know that the pain can be unbearable. Reduces me to a crying, whining little baby and I hate it. Been having these cycles for 23 years now. I really truly feel for all the rest who suffer from this. I relate to all you go through...the helplessness, the frustration, the fear of sleeping, the anxiety of when the next one will hit. God Bless you all.
John DeVito <boombusters@hotmail.com>
Landing, NJ USA

Hi, After 4 years of suffering with what my doctors thought was CH (daily and nightly attacks 15-30 min), my new neurologist has diagnost me with chronic paroxysmal hemicrania. This is my 3rd day on indometachin and it seems to work very well. Only a few attacks and they have been very short and mild. I have been reading a lot of information about this type of headache, but I would like to get in contact with others with the same problem. Please feel free to email me! Thanks, Mikael
Mikael Jonsson <micjonsson1@aol.com>
New York, NY USA

There comming back and I'm scared.I won't let this take over my life this time.NO WAY!!!It's been a year and you almost forget until you wake in the dark with your head on fire and say f#*% here I go again.....
Maryanne Quinn <QuinnMaryanneE@irs.gov>
Phila, pa USA

Hi! I am wondering if any of you have tried or seen a neuromuscular dentist for your headaches? I have had a 90% success in treating patients when everything else has failed. Check out www.dentalsedationcenter.com and click headaches. Feel free to email me if you have questions or to help you find a specailist in your area. My wife suffered from headaches for years, now she has maybe 1-2 a year. Thanks for reading.
Patric Cohen <jedidr@earthlink.net>
Beverly Hills, CA USA

This is the very best website I have ever seen for information on Cluster Headaches. The list of sufferers is a great idea!!!! Debbie Langdon
Debbie Langdon <dslangdon2@yahoo.com>
Edmond, OK USA

Hello im new to this site. I do not have cluster headaches but my husband does. he's had them since he was 13. He gets them twice a day once in the morning and once in the evening I feel useless there doesn't seem to be anything i can do so far no meds have helped.
renee pressley <reneepressley@tdbanknorth.com>
brant lake , ny USA

Hello..iam a 48 years old and have suffered this excruxiating condition for 26 years..i started a new cycle in Feb. and it is still hanging on..i have 1 initrex inject. left and am hanging onto it for dear life!!!! i was pain free for 3 yrs, before this one hit..i am so releived to know i am not alone..for yrs. i thought i was the only female with this condition(one doc. told me only males had them)i went through hell for years before finding a good neuro.please feel free to e-mail me anytime ...got lots more to say!!!!
Dorothy Rogers <rolltiderebel@bamacomm.com>
Sulligent, AL. USA

Lucien, I got lucky with the doctor. She prescribed me the Verapamil 80mg/3x day and gave me a couple samples of oral Imitrex 100mg. I also picked up a bottle of over the counter Melatonin which the clusterheads from the boards say it will help kill nocturnal attacks. If it's any indication that the meds are working, I had shadows yesterday, but no attacks. I was surprised. Haven't had to use the Imitrex yet. I hope these meds will prevent the attacks, it will be nice to know I will have something to use for future cycles. So far so good. Wishing you pain free days and nights! :O)
Mandy <mandymarie96@aol.com>
Mount Olive, NC USA

hi my name is diane, and i'm new to this web site and to clusterheadaches, or as everyone knows it the beast, I have had migrains for years, and thought that I would never feel pain worse than that, boy was I wrong, when the first one hit, I honstly thought I was going to go crazy, untill it went away. I thought oh my GOD what was that, and please I never want that to happen again. But within a few mins, it was back, worse than ever. Took my reg med that the doc has me on for migranins, nothing, by this time I knew I was going crazy, living in a small town, you don't have the best doctor's around, what makes it lots of fun, is that I also have m.s. so of course thats what it was blamed on, But I was very lucky, a very good friend of mine, gave me the name of a doctor that knew about the beast, love that word it fits, and even tho, I still have them all the time I have a doctor that is trying to help, so far nothing is working, but I'm not giving up, that something will help me, and I really want to thank everyone, on this site for all the help, I have gotten by reading your story's. You have made me relize, I'm not alone, and knowing that helps, more than the meds, at times, Diane
Dian <littlebittywoman1958@yahoo.com>
mayfield, ky USA

While scouring the web concerning these darn headaches I found your site. Mice to hear other peoples storys. My cluster headaches are religously driven it seems, occuring always at Christmas and now it seems Easter. They used to only ever be started by alcohol but now i`m tee total they have started comming without stimulus and in my sleep. Last nights one was the worst in memory for me, I truely thought at one stage an Alien was going to pop forth from my eyesocket, even my usual presure on temple points didnt help which was scary, normaly that suppresses it to a suvivalable level , but not last night .. anyway 29mins in apart from acassional twitching surges of agony it disapated. Looks like a visit to my doctor for me then,
Mike Smith <madmickuk@ntlworld.com>
portsmouth, Great Britain

Mandy, I didn't notice a sharp increase in attacks when they returned after the first few days of the Prednisone tapers. Just my usual peak frequency of 2x day, which is now down to one in the evening. But I'm also taking Vrapamil--are you? I try to get around my insurance limits by stocking up on the Imitrex (injections and nasal) from time to time. My hope is that the Prednisone will still work for me, if I taper down more slowly, to break the cycle. Let us know how this cycle plays out for you. I hope at very least your doctor can provide you with some Imitrex samples to get you through it.
Lucien
USA

Lucien in NY, Same thing happened to me. The Prednisone dose pack always aborted my cycles. This cycle I took a dose pack, the attacks came back a few days later. Took another pack, they came back again a few days later. The doctor advised that another round of Pred is not safe, so tomorrow I am going in to see about trying something else. I wish I could continue on the Prednisone, I have NO attacks while on it, and it's also cheap at $16 without insurance. We'll see what happens tomorrow. Did you notice an increase in attacks after the Prednisone? Before, I'd only get one hit a night, now I get anywhere between 1 and 4-5 hits. Sucks.
Mandy <mandymarie96@aol.com>
NC USA

I'm 42 and have been suffering from cluster headaches for about 5 years now. My cycles seem to last a few months, and during that time, the frequency of my headaches is several daily. I've really found this site to be very helpful and reassuring. We are not alone!
Joe <jfgrimley@comcast.net>
Doylestown, PA USA

I've had the CH for near 20 years, I am 69 yrs old, I have about 1 episode a year, usually in Jan or Feb, through March or April. When it settles into a pattern, my common pattern was every 2nd night at about 2:a.m. lasting about 2 hrs, pacing the floor, with a blanket over my head to block out even the street light down the block. I tried Prednisone, and Lithobid with virtually no relief. Then my doctor suggested oxygen. He told me the "normal" way was to breath it in with a mask, but because the affected side of the face clogs up your nasal passage, It seemed I wasn't getting much help, so I opened up the nasal passage with some OTC nasal sprays, and then blocked the open nostril on my non-affected side and forced the oxygen through the sinus on just my affected side. I found I was getting relief then very quickly. If I rush to my oxygen tank within the first 3-5 minutes of the CH starting, I breath in extra long breaths, exhaleing quickly and breathing in real long breaths, I found I get get total pain relief in about 6 - 8 minutes, and can go right back to bed and to sleep. But I've usually found that the headache returns (just once) about 2-3 hours later and I need to repeat the procedure, then I'm free of the CH til two nights later. But the level of pain never gets as severe as I used to suffer, when I let a cycle of pain run its course over the 2-3 hours, then going away on its own. With the Oxygen I only have slight pain for about a total of 15 minutes the two occurences of each night's cycle. The medical textbooks seem to try to explain that the oxygen goes to the lungs and gets into the bloodstream, and brings the relief. But I (and my doctor agrees) feel that what is really happening, is that it is the topical application of oxygen working in the nasal passage on the tissues where the point of pain is happening, and that the Oxygen is directly, topically affecting that point of pain and truncating the pain, because I am getting relief so quickly. I hope my "hint" on how to use the oxygen will help others. My doctor feels I need to write it up more "officially" and send it to places like the Michigan Headache Pain center and other places and let them test my idea out further. Fred Penner
Fred Penner <FredMPen@aol.com>
So. Sioux City, NE USA

I'm 41 years old. I got my first cluster-type headache at the age of 26, but it was a one-time attack. A few years later, I entered a cluster period that lasted for over two weeks. And that has been the pattern ever since: every two to three years (usually in the Spring, sometimes the Fall), I enter a cluster phase. The peak period of the phase lasts for about two weeks, and during this period I get from 1-3 headaches per day, one of them always in the evening. The headaches last for about ninety minutes, I guess. They always seem to exist outside of time, in some eternal torture-chamber of the cosmos. The best I could do (before I was diagnosed correctly and prescribed effective medication) was to sit in a chair and drop my head between my knees, and breath--heavy exhalations in which I tried to release the talons on the right side of my head. Sometimes this seemed to help a bit, but it was still torture. Four years ago, I finally saw a neurologist who specializes in headaches (at the Headache Center in NYC). I was perscribed prednisone pills: 6 per day for two days, 5 per day for two days, 4, 4, 3, 3, 2, 2, 1, 1. At the same time, I went on Verapamil (240mg per day). She also gave me a perscription for Imitrex injections and nasal inhalants, which I didn't end up needing. Prednisone worked splendidly for me, stopping the cycle in its tracks, and after a few weeks of clear skies I stopped the Vrapamil. Now I keep Imitrex around for when the cycle hits, to last me until I can get my Prednisone and Vrapamil Rx filled. One warning, I recently went to a new doctor who prescribed a Prednisone regime of 6 per day, 5 per day, 4, 3, 2 ,1 (instead of 6, 6, 5, 5, 4, 4, etc...) and the headaches came back after the first few days (this was methylprednisone 4mg). I renewed the Rx and repeated the prednisone taper with the same result: headaches returning after the first few days, although weaker than usual. Now I am squeeking through the end of the cycle with expired Imitrex. I should have been firm. Between cycles, I forget. Hope this is of use.
Lucien
New York, NY USA

TO: Traci of Davonport in Tassie. If you can get to a computor again see this and need some help please Email me the the address and I will be only to pleased to help herever I can. I'm a long way from where you are up here in the NW of Oz but only seconds away by Email. No'one needs to go throught this alone. Kind Regards Barry
Barry T Coles <barry.coles@watercorporation.com.au>
Karratha, WA Australia

I'm a 47 year oldman who until three diferent doctors couldn't tell me what was wrong with me my TMJ doctor told me about you all. I've only had one cycle in my life. It lasted for 4 months with a cluster every other day,allways between5 and6 o'clock ninty percent of the time. After reading so many of your letters and trying to eleminate my trigger points I'm on the mend for now.I've found a cluster dr. but can't get in till Oct. I thought my pain was bad (it was) but it seems mild compared to alot of you. God bless each and every one of ya.
Duncan Smith <pippie669@aol.com>
Kenova, Wv. USA

Hi there, I am on my 15th year with these headaches. In the beginning I took all differwent types of medicine. It was like I was carrying a box around all the time incase I had an attack. We had moved from Washington state to Michigan and that is where I found some relief. Mind you, this is after 7 years of this. The doctor I found put me on Liquid Lidocaine 4% Solution. This stuff takes away the intensity not the headache. I can deal with the soreness but thank God the intensity is gone. As i first feel one coming on, I put a few drops in my nose and wait. Shortly after things are alot better. The problem though is if my nasal cavity gets stuffing, then the Lidocaine takes so much longer to react. Sometimes an hour or so. I do remember getting one of these headaches in high school. One time though. I do smoke pot sometimes so I can get to sleep. We have been in Florida now alittle over 2 years now so the climate does not matter. In the last 15 years I have gone twice for a year without a headache at the same time I have gone 3 times where they never went away during the year. At the momemt, the headaches have been around for 6 weeks now. Hopefully another couple weeks they will subside. Can't wait. Everyone take care and hope your cycle clears up soon. Mark..
Mark <mandm29110@msn.com>
Lutz, Fl. USA

I am the wife of a long-time CH sufferer, Bill, whose history with CH is much the same as many of you who have posted here. His attack cycles were typically every 18 months for many years until a recent three year remission. Now the reprieve is over, and he is in the 5th week of a new pain cycle, particularly severe. We think the remission may have been due to Bill's starting use of a C-pap machine for breathing assist at night because he has sleep apnea. I read on this site a while ago that many CH sufferers also have sleep apnea. I found a used oxygen concentrator machine for him, also, and a non-rebreather mask, which was helpful during all the "warning headaches" he did still get during the 3 year break. When the current attack cycle began, Bill only had Darvocet that his GP gives him (fairly useless in a full out pain cycle), and he used ice packs on his face and neck. A doctor Bill sees for his back pain gave him some sample packs of immetrex auto injectors. That worked to abort two CH attacks, but with side effects sufficiently frightening (like a heart attack!) that he refused to use any more of it. I was finally able to locate a headache specialist in San Antonio, near us, who accepted Bill as a patient, on referral from the doc who gave him the immetrex. We are grateful people! The doctor in S.A. did a quite thorough history, and prescribed four drugs, Verapamil, Prednisone, Zomig, and a specially compounded nasal spray of lidocaine. The first two are preventives and the last two abortives. This combination has worked wonderfully for Bill, but everyone seems to be different. We were lucky to get a good and helpful treatment right away. It's all very expensive and we have no idea how much of the cost will be covered by insurance, but don't care right now - just so glad to have some relief! This is the first treatment ever that has done him a bit of good, aside from oxygen to ward off milder pains when he could tell they were coming. Of course, most come on during sleep, so I'm wishing I could rig the O2 onto his C-Pap mask....Probably need a different mask (Talk about expensive!) I am interested in an aspect of the CH attack cycles Bill describes about dreaming. He often reports very vivid,long, detailed and complex dreams that preceed pain attack cycles, along with the prodromal "warning pain" period. He was still having those early in the pain cycle, too, when the first of these head pains were waking him from a deep sleep. Has anyone else suffering from CH also noticed these types of dreams associated with CH cycles? If so I would like to hear your accounts of them at my e-mail, or on the site here. Thanks for shareing and for allowing us to, also.
Rebecca Knaack <ARKnaack@aol.com>
Poteet, Tx USA

Hi my name is Ben, Im 34 and have been having episodes since I was 17. I cried for the first time this morning while reading on this site. I think i average 9 on the Kip scale 4-5 times every 24 hours for up to an hour and not less than 30 mins. I seem to get attacks whenever I am relaxing or asleep so I can still manage to work most days. I have started drinking a lot of coffee and dont let myselfe relax until i am exhausted but everyone must sleep. No one can understand what we endure except ourselves and I would like to wish for every one of us (or anyone in severe pain) Peace.
Ben Nightingale <ben505@internode.on.net>
Sydney, nsw Australia

please update your adresse book. My husband is in such agony and I need someone to talk to and it is a no response what is that
maddy <maddybs2003@yahoo.com>
USA

My insurance will only pays for a certain number of Imitrex injections and nasal sprays per month--not enough to get me through my cluster cycle, which recurs every 1-3 years. I'm tempted to stockpile medication. Has anyone out there experimented with taking imitrex injections and nasal sprays after their expiration dates? I'm also curious if anyone else has experienced relief from marijuana.
Nyal
USA

I've had clusterheadaches for over 20 years and am facing the fact that I will somehow have to manage them the best I can. I have graduated from eposodic to chronic and have tried every drug under the sun. I am a teacher and struggle at times to maintain my classroom. I am always interested in hearing from others as to how they cope with their headaches, jobs and loved ones...David
David Boughton <dbboughton@zoominternet.net>
Meadville, PA USA

Hello everyone! Thank you all so much for this special web site. I am writing from Poland. I have a dear friend who suffers from cluster. It first started when she was 20 years old. It has been 15 years now... There is very little known in Poland about this condition. She went from doctor to doctor - and nobody knew what was wrong with her. She was diagnosed just recently. Thanks to this web site I know that she's not alone. I hoping to find additional information about cluster headaches, treatment and most important pain realise. I am reading all these stories of how this condition effects people's lifes. Many of them are so similar to what she is feeling. It helps me to understand her better. Maybe one day the pain will go away forever... mayby there will be a cure for it. Sometimes I feel helpless - I don't know what to do, how to react, how to ease her suffuring... I makes me so mad not to be able to help! But thakns to that web site not only have I found a source of information but also a reason to be stronger - so many suffer and so many have to cope with suffering of once they love. We are not alone. Since my friend doesn't know english I am going to translate every word for her - so she will know that she's not alone with her pain. Thank you. sincerely, Karolina.
Karolina
Warsaw, Poland

Hi my name is alvin I am 47 yrs old. Ibeen having cluster headaches for the last 20 plus yrs. I take medication for it. Indocin, lithium, nurotin three time a day, it only nums the pain. I got use to the pain, When i go to the dentist i do not need shots for the pain.I went through m.r.i's, cat scan every r years. I getting tired if it. the [pain]
ALVIN SILVA <alvin-silva@sbcglobal.net>
SAN JOSE, CA United States

is this the place that you tell some one how bad my husband is hurting right now
Judy
eagle lake, mn USA

Hey, I'm no longer alone! I'm now a Clusterhead. Thanks! Eric
eric heppinstall <vonhepp@excite.com>
luzerne, pa USA

Hi my name is Tracy im 39 and suffer with cluster headaches I was diagnoised with these headaches about 10yrs ago. I am a single mother of two and just recently have suffered over a month of bloody migraines. I feel like i am going off my head. My friend has let me use her computer so i can make sense of my affliction and better understand what others are going through.My family and friends have been a great support but sometimes i feel like a real burden on them, the doctors treat me like im some mad woman and at times i feel worthless as i get so stressed and fed up with myself. I have recently started on natural therapys as nothing else seems to work and im at the end of my tether. Most of the time im a happy strong willed person, and then i have these episodes and i just want to curl up in a dark corner and die the pain is that bad.To all those sufferers out there I am truly thinking of people like you I hope we can all give each other the strength to go on and enjoy the things that are important to us mine is my supportive friends and family they are wonderful. Thankyou for taking the time out to read this messsage Tracy.
tracy
Devonport, tasmania Australia

I have seen the death of my parents, the birth of my children, my marriage end in divorce. A most beautiful new love in my life who will learn of the only thing that has never changed...the headaches.
Megan Bly <bbly12@comcast.net>
haverhill, ma USA

I have been experiencing clusters for as long as I can remember, but it was confused with sinus headaches because as I suffered from infected sinuses when I was a child. I get intense headaches that cause me to cry and "paw" at the side of my head while wishing I had a drill to..I don't know...create a hole for the beast to leave. Does anyone have attacks that causes them to vomit? I hate that. A blinding headache coupled with the pain of puking is not a good time. Enough complaining. I, like yourselves, am just trying to cope. I wanted to thank clusterheaches.com for hosting this valuable site. It is very informative and the support is great. I always felt alone because I've never met anyone else who has clusters. People I know share the opinion that clusters aren't as bad as migrains. I think the word "headaches" understates the pain. Thanks again. C.C.
C.C.
Canada

I think I'm finally have answers for why I been feeling like someone has poke me in the eye with an icepick. I had bad headaches when younger, but only remember that some were started by listening to music. Last few years since I got Fibromyalgia I started to develop headaches that made everything but the bad IBS attacks seem whimpy. When the headaches started I was told it was just dry eyes and told to use drops and get my medications changed. I've learn to save all the pain medications I can just for the headaches and hope I can get some mild relief. Darocet is all I can get since State stop paying for Ultram. I've notice how caffine helped some, but can't afford to mess up my sleep patterns too much. I see eye doctor tomorrow for my bi-annual visit. Normally they seem to listen better then the doctors I get assign to over at Inpatient. With list of things my doctor has to go though each time he sees me, mentioning my headaches barely gets any attention. Only thing I can be sure of is that by the time they leave to start their pratice somewhere, they know something about FMS. Found this site from link on online gaming site I hang out at in topic about using LSD. I use computer games to keep mind active, for go to site to read non gaming threads. I'm known ElneClare online and in several online games.
Ellen <elneclare@gmail.com>
Baltimore, MD USA

It all started when i was about 12, though i am 40 now. During a school exam i had a blinding headache that lasted about 30 seconds and abated. All through that day these headaches came and went, leaving me in tears in the school and then at home. My parents and the school presumed it was just nerves at the exam. Over the next years i had many of these "episodes". Some lasting days, knocking me off my feet. Some lasted only 20-30 minutes. My brain was working ovrtime thinking i had a tumor or something. Then, by sheer luck i went to see my new doctor, as i had moved to Hereford with my work. He had just been on a course abotu various head pains and there symptoms and had read about cluster headaches. He prescribed me a tablet called "mefemic acid" (i think thats the spelling) This actually seemed to work if i caught an episode early enoug in it cycle. Then on the way home from a shopping trip to Ikea today i heard an amazing programme on Radio 4 about cluster headaches and there treatments. They were talking about various things including LSD. (no thanks!!) I am amazed, i hd never thoguht to check the net about the damn things, but have now spent the last 3 hours reading about me not being the only one. Thanks everyone, hopefully we can sort it out. :)
Carl <jackrin_runfer@hotmail.com>
Grimbsy, UK

I have suffered periodically for ten years since a car accident. I am in a cycle now but managing OK, with triptan drugs and diet management - still not a bundle of laughs. My last episode was cured homeopathically the lasting effects of which I think are helping this time. My last episode was so severe I ended up with a neurologist. He told me that some research suggests that this related to a flaw in the hyppothalmus (hind brain) which controls night/day and seasonal rhythms which is why many cluster sufferers get attacks around the equinoxes, spring and Autumn. Most sufferers are men. You probably have all this information already, and I know there are trials being undertaken in London by a group attached to the Migraine Trust, which I joined in an effort to help myself. I was unable to partake in the trials as I have family commitments but wished I could. I have so much sympathy for anyone who has to endure this and would do anything to find out more and perhaps be able to help. I have spent four years studying and hope to graduate as a homeopath myself in the summer and migraine is a particular area of interest for me. Does anyone out there find that the pattern of the cluster is affected by light? I can't quite work out why, but I seem to be able to hold off the attack in the light and it comes on in the dark. I have just come back from a ski trip which was risky as there is less oxygen up there and the sun is so bright but I only got three major attacks and several 'baby' ones. Sounds funny, but even though it is always there in my left temple, which feels cold and 'prickly'-on the train trip back it came on as we went through train tunnels and abated as we got into the light again. I am always looking for theories on why I get these migraines and I wonder how many people who have this suffer also from astigmatism or short sight and if it could be related to eyes and light in some way. I know it is supposedly caused by nerve endings around the blood vessels in the brain as they expand due to blood flow. Has anybody any similar experiences? Does anybody else feel better when it is cold (I suppose this would cause vasoconstriction) or when they are moving around (which would cause the opposite)? I would be interested to hear from you, yrs Linda
Linda Howard <linda.howard1@btinternet.com>
Bury St Edmunds, suffolk UK

hi, my name is kirby and i am a 32 year old man. i have been sufferin from this affliction since i was 17. like alot of people i was very ignorant to what was actually happening in the begining. in fact when the beast would show its ugly face in the my mother would get so freaked at how much pain i was in that she used to accuse me of taking drugs or drinking something? obviouslly i am well aware of what i have now, and so does my family(wife & kids) yet what really sucks is we have a name for it yet only i no what pain i'm going through each time this god forsaken thing comes(that was before i found this site.) and know matter how much pain friends ,family,co-workers see you in my explainations would never come close to acuratlly describing how close to death i acctually come or want to! to everyone around itlooks like a grown man overreacting to a bad headache and taking an excess of pills because we/i like to!? like the rest of you who know exactly what i'm refering to about the unthinkable and unmentionable pain, i am always looking for that hidden profound explaination and cure. my suffering has developed into anytime of year, for any periond of time (which never seem to be any less than a minimum of 3 1/2 mnths with 2-4 episodes a day) days mostly. great at work! on top of all the reagular good stuff and complaints, and frustation my body has ingested so much medication due to this issue, that it has developed an exteam immunity to medications and doseages that some of the strongest solutions are now just beiong taken foe the sake of taking it. it seems nothing is going to give any relief. how much longer can this possibly last? is this a religious answer? a spiritual answer? a medical one? we as the human race can send a man into space, spend millions apon millions to make weapons to kill other people in wars. yet we can't come up with a medical pain reliver for this affliction? someone has to know something? sorry if i sound frustrated? but i can't f@*K'n take this anymore!
Kirby <krbstr@rogers.com>
Markham, ontario Canada

Hey, My name is April. I haven't had a cluster headache since late 2003, but the beginning of March of this year 2006 it started again.
April locklear Bonilla <indiaojos_pr@yahoo.com>
Charlotte, NC USA

Another trip in the early AM to the ER! The ER doc told me to find a cluster headache specialist in the city of San Josewhere I'm staying for a few weeks. The attacks are unrelenting: Even after the killer pain ends, I'm left with a dull mini cluster on the side of my head that's affected. These attacks also have triggered my migraines. If anyone out there can help me find a physician in the city of San Jose who specializes in these headaches I would be forever in your debt. I don't think my HMO will pay for anymore ambulance rides. (I was taken to ER last week in another city. Thanks, thanks, thanks
Pat Watkins <jordan6662005@yahoo.com>
San Jose, CA USA

Hi, Ive suffered from CH for 2o Years, but was only diagnosed 2 years ago
Julie <Julesbingo@hotmail.co.uk>
Stanwell, \middlesex England

well here it is 3:30 just got over a visit with the reaper and waiting for him to come back--afraid to sleep..i just thank you for this website..i dont feel so alone anymore and i have a place to go when i feel like this now...i hate how this makes me feel and act..i cant even think straight right before an attack...thanks for being here tho..the only thing left for me to do now is await his return..
erica <pureevil9@comcast.net>
nj USA

I found this site after a friend of mine suggested doing a search on the internet. I'm male, 45, married with 2 young children, and have had CH since I was 19, finally diagnosed 3 years ago. I'm episodic and can't possibly imagine what it would be like to be chronic. I usually get them when the seasons change (March-April or Sept-Oct). Sometimes I skip a year or two, sometimes twice a year. They usually last 2-4 weeks, and when I was younger, used to get them on the top of my head and behind my eyes... now mostly back of my head base of my skull on the left side. Lasts for 15-45 minutes, 3-10 times per day, 2-3 times at night when it's really bad. When it's severe, my left eye will tear and left nostril will get runny. During the day, I try to work through them, sometimes I'll lock myself in a bathroom and/or pace. At night, I go down to a cool leather sofa, grab a few pillows, crunch my knees to my chest, face down, and push my head into the cool couch cushions. My new doctor who diagnosed my had me on indomethacin 75 mg 2x/day, and that seems to shorten the length from a few weeks to about 7-10 days the last few times. Had several doctors who had no idea what I had... I wish this website had been around sooner. Glad to see all the medical suggestions here. Just had my most recent episode start when I was on vacation last week, hoping the meds kick in soon. Good luck to all.
Mike <mweidner@rochester.rr.com>
Rochester, NY USA

Well, my yearly cycle came a couple of weeks ago, and I went to the ER and got my Prednisone prescription, which knocked the cycle out as usual. No worries. Then a few days ago, they came back. I haven't had that happen before. I was awakened by the attack while I was sleeping, as usual. But this time, I also had one in the morning when awake. I've never had that happen before. I knew we were broke yet again, and I felt so guilty for wanting to go back to the ER when I was just up there a couple of weeks ago. I toughed it out for three days, till I couldn't stand it no more. I had an attack in the middle of the afternoon, that was really hard for me. I'm so used to having the attacks in the middle of the night, and I suddenly had one in the day when everyone was awake. I didn't want to frighten my kids, so I went outside so they wouldn't see me. I resumed my rocking and crying, the attack was a bit more intense than usual. When it was over, I noticed a bare patch on the ground where I had pulled up all the grass. I got a new Prednisone dose pack, and so far it's working as usual although I do feel shadows. I don't know what will happen if I get yet another attack as I probably can't get a third Prednisone pack right now. I wonder, if my cycles and attacks continue to increase, does that mean I'm going chronic? God I hope not. I don't see how you guys do it. I could barely tough it out for three days, it's no wonder they're called suicide headaches. No wonder at all.
Mandy <mandymarie96@aol.com>
NC USA

Great site!! Thanks for all of the info, I've been off and on suffering for 14 years. Now I know where to go to get help. Thanks
John G <John4Roni@aol.com>
Littleton, CO USA

As I was sitting at home after another 4 week battle with these lovely cluster attacks I happen to stumble on this web site and found it quite interesting. I just wanted to let you know how releived I am to know that I'm not the only one out there dealing with the hastle of getting the proper meds and to even get oxygen from my doctor that he did'nt even know helped with these types of migranes. Thank you and I will continue to visit and learn.
LIZZY <LIZZARD3471@YAHOO.COM>
SHAKOPEE, MN USA

the pain is bad. I've been told they're cluster headaches by my doctor, being mine is chronic, a lot of the symptom's don't jive, so I need to find out more. I don't know how I ever missed ths site before, 'cause I've done a lot of looking for information about these 'beasts!' here's to hoping you help, and help to give you hope :-)
Cameron <cdv1979@hotmail.com>
Kamloops, BC Canada

Hi all Just found this site I am visiting San Fran and have been hit by a pretty bad cycle of CH's im without any of my medication of course not planning to have a cycle since it has been a number of years. oweee here comes the beast. more later ... PFDAN
Jeremy Reid <comesnatural@gmail.com>
san francisco, ca USA

I'm so thrilled to find this site and resourceful information. I've been really suffering from daily headcahes for the last month and a half now and went to see a ENT doctor. Of course, he took CAT scans of my sinuses and no problems whatsoever. Typical misdiagnosis from what I've been reading. I've now seen a neurologist who put me on round 2 of Prednisone. Prednisone seems to help the severity of them but not completely rid them. I ALWAYS get headaches from alcohol and normally only suffered from migraines/extreme headaches once or twice a month - so I never thought anything of it. I'm so glad to find a CH supportive community to bounce ideas off of. Does anyone else attack the beast with a bottle of water during the night and find that it works well? I've also seen oxygen used as a treatment - and since I live in Denver, I could use more of it for sure. Thanks.
Irv Stern <irvstern@comcast.net>
Lafayette, CO USA

Jamey Philipp - I am a 35 year old male who lives in a Milwaukee, WI suburb. I've had cluster headaches for 15 years, an episode occurring every 2-4 years. I am currently experiencing the worst round I ve ever had. Most of my episodes last about 5-6 weeks, I m going on week 10 this time around, I usually only get them at night, but this round I ve had a handful when I wake in the morning and even some during the day. So much for them getting easier as one gets older. I guess they are typical clusters so I will refrain from describing them too much if you are here you probably know all to well what they are. My headaches are on the left side of my head, starting on the top of my head / behind my eye / around my nasal passage. I get warning headaches before the clusters start to attack. The intense attacks are about 5 minutes apart with the headaches lasting 30 minutes to 3 hours. My ritual is to sit in my chair, lean forward to place the bridge of my nose on sharp edge of my desk and push as hard as I can with all my body weight, rocking back and forth. I also pace about stopping to sit on the couch while rocking back and forth in the fetal position. This brings me close enough to fling myself back and bury my face into the pillows to scream if I need to. I have a friend that is a neurologist who specializes in headaches. This is a huge blessing to me no over-explaining on my part, no disbelief on his part. He has been very good about trying to keep me in meds, even though my insurance pays for limited amounts (as usual). I urge everyone to find a neurologist that specializes in headaches; anyone living in southern Wisconsin / central Wisconsin could see my guy contact me and I can give you his information. My contact info is in the where we live section.
Jamey Philipp <superhawk23@wi.rr.com>
Muskego, WI USA

I can't beleave there are others out there that feel like me. I have been suffering for 30 yrs and been through all of the guinney pig trials,doctors telling me the pain can't be "that bad" and even though nothing else worked pain killers are adictive. Just once I wish they coulde have the wonderfull experiance.like a soldering iron to the eye. Anyway just reading about other sufferers gives me a feeling of not being alone.Four yrs since my last bout. Damn so much for groing out of them for now, about five weeks into this one "where is the end" I can't wait!!!!! Would love to chat with other sufferers in S.Maine email me boatdad1@yahoo.com Nice finding a unique family Vnce
Vince Schwartz <Boatdad1@yahoo.com>
Lisbon Falls, Me USA

I'm a 44yr old father of 5, a beautiful wife of 38. My ch's started a year ago right after a bout with pneumonia. It took alot of tests, wich all came back normal, my family doc sending me to a neurologist, who finally told me what it was. The whole proccess took roughly 6 weeks, by then I was at stage 10 on the KIP scale. I've been looking for smeone around my age, a fellow sufferer, to chat with. Someone to trade stories with. Even though I found this site it still feels lonely sometimes.
David Borck <dbborck@powercom.net>
Beaver Dam, Wisconsin USA

Hello- my post was a bit too long to make it here- PLEASE SEE the 'Message Board' / category " Support ..." and the 'Story from Mr. Cluster " entry- I think many may relate to it.. If you have any comments about the story, please feel free to post them. One thing we shoudl all try is to raise the visibility of clusters to get more research towards finding out causes/preventions by qualified doctors and researchers.
Ray <ray4903@comcast.net>
Seattle, WA USA

A Little On Our Friend Mr. Cluster I get cluster headaches. It is an affliction. A malady. A curse. To say that cluster headaches are a form of headache is like saying that a hurricane is like a summer Midwestern storm. The current medical literature , including such prestigious institutions as the Mayo Clinic, state very little as to why and can only offer possible remedies when they occur. Bottom line- there is no known cause and no known cure. Many people who suffer from this pain have given it a name The Beast . A nice short one syllable word that at least ascribes a possible name to the demon that is behind it all. For any who have never experienced it, it is impossible to describe. To those who have them, it is sickeningly easy to describe, unfortunately, in rather great detail. Cluster headaches alter your life, change your perception , challenge your will and literally bring otherwise strong people to their knees. I am a male, so I never have and never will experience childbirth and I currently have all my limbs so I have never experienced any form of amputation, however I sincerely believe that the pain of cluster headaches rivals or exceeds the pain associated with the former two situations. Some have called cluster headaches, the suicide headache and I can attest to that validity. There are times, unfortunately quite numerous, where the beast , quickly and efficiently, drags into the depths of his dungeon and right to the very edge of a deep precipice where below all hope seems to be lost. For most, thankfully, we cling to that edge fiercely, fighting in a struggle that sad experience tells us that it WILL end, even if only temporarily, and a new battle can be waged at a future date. Although armed with knowledge of no truly known cause, once these visits start, one is forced to review every miniscule detail of your own personal life in a frantic search for a reason, a way to change something that will keep the beast in a permanent cage. It is like a defense mechanism to hold hope that one can find a possible antidote rather than completely capitulate and allow pure fate to travel it s course. You look at what you eat, what you see, what you smell, how you walk, how you sit, how you breathe, what everyone around you is doing. The kind of soap you use, your shaving cream brand, what color socks you wear or wore a year ago. Is your belt too tight, your shoes too shiny, the doorbell too loud, the sky too cloudy, too bright, current barometric pressure , everything. It is the search for the Holy Grail- that will never be found. Some say it is a problem with the hypothalamus which is a supervisory center in the brain. It normally accounts for about 1/300th of total brain weight and regulates body temperature, blood sugar levels, metabolism of fats and carbohydrates and sugar levels in the blood. It is a region of the brain that regulates sleep cycles, pituitary gland activity and other autonomic nervous system functions. It is that small microchip in the engine in your skull that makes a lot of things work or not work properly, as in the case of cluster headaches. What makes it work, or more importantly, not work properly, is really not known. Whether or not a malfunction in the hypothalamus is what actually causes cluster headaches is a theory. It is the proverbial mystery wrapped in an enigma . Isn t that just great, peachy keeny. I mean you break a bone, we know what it is. You get a cast , a painkiller, be nice to it for 6-8 weeks and then it s okay. Maybe stiff in cold weather, but generally okay. You will go to sleep after a perfectly ordinary day in a perfectly ordinary world where not much was different that day than the previous one or the one before. But something has changed, only you don t know it yet. You will awake, be wakened, at 2:30 or 3:30 or some ungodly hour and things will not be so ordinary. It is not from a casual flung arm from your spouse rolling over , or a loud band from outside somewhere, it is the Beast come calling, he has awakened and he wants you to join him- again. On the very first time this happens, you wonder, was it a beer too many, that piece of chocolate, maybe the sip of the new expensive red wine, your wife s new perfume-- but damn what a headache. I mean Jesus, what a headache, never had one like this before. You have to get up. Walk around, take some aspirin, hell take 4 aspirin, walk some more, grit teeth, shake a bit, wander in the dark feeling the dagger, the pulsing pain. Shit, this really hurts. In 45 minutes, maybe a bit less, a bit more, it goes away. As the shadow drifts away, you want to wonder what the hell was that, but you re just damn glad that it s gone and you re tired, you re exhausted, but it s gone- back to ordinary. It felt as if you just stubbed your big toe on that damn metal bed corner 30 times in a row and it really really hurt bad real bad- but a lot worse. That little sadistic pain fairy got the wrong house, wrong bed, wrong person- shit happens. But as they say, not exactly . No, not at all. You don t know it- yet- but something has changed. It is no longer an ordinary day or ordinary life. Every sufferer has their own description of the pain, like we all know the right ingredients of a special recipe, or just the right way to turn the faucet to stop that pesky drip. For many, including myself, it is like an ice pick being driven repeatedly through your eye (only one eye, mind you, and always the same blasted eye). Many times it goes very very deep to the back of your skull into your neck. It is like a root canal through your optical nerve, or maybe childbirth through your eye socket or amputation (slowly) of your right leg, above the knee, of course. After that first time , it really starts, that journey through hell, and you never even bought a ticket and don t know how long of a ride it will be- but it will be bumpy and full of potholes, detours and curves and crashes, big ugly twisted crashes. You don t know it yet , but the next time, maybe 5 months or a year , maybe two, when you get that particular wake up call at 2:30 or 3:30 a.m., you will know exactly what it is and it will strike terror and dread into your heart. You will know that the pain fairy found exactly the right house, the right bed, the right person. And , you will want to cry. The next day, after that very first night, you will probably feel okay , for a while. Tired perhaps, a fleeting thought of maybe you have a brain tumor. But, give me a break. It was just a really really bad headache. The mind works in mysterious ways so don t be a pansy , a wuss, it s over. Then, maybe at 2 or 3 p.m. that afternoon, on that not so ordinary day, you feel a slight twinge, maybe in your neck or even in your face muscles, just a twitch mind you, and a slight pin prick in that same place as last night. Hmm, weird. It keeps happening and in a few short minutes, the pain starts, and I mean THE pain, like last night except you have been awake so you get to feel it in it s entirety and after that 30 seconds of wonder you realize that something is wrong, terribly wrong. This goes way beyond a what the hell ? because it already has you. The beast in gnawing at your eye, that same eye, chewing through your skull dropping you to your knees, but you cannot stay put, you cannot lie down and just close your eyes. Some instinct forces you to move , walk, stumble, try to run away, maybe crash into that wall over there. You are scared, you are terrified. It has to be that brain tumor the thought you casually dismissed a few hours ago. This is real pain, a torture, something has gone completely haywire in your body, your brain, some type of physical payback for all the sins of the world has finally found a resting place in your head. You don t have any medication, never even heard of anything except aspirin but right now all you think about it is that it has to end. You can t stay alive very long with pain like this. The human body was not built to withstand it, you are red-lining your modest V-6 brain at the Indy 500- something has to give. Then it starts to subside, relief floods over you, then a very sharp stab, a reminder it may not just yet be through with you, but it is going down, ebbing away, taking a part of you with it. You think about that story you read about some civilizations never wanting to have their picture taken as it steals a part of them away and you think that your tolerance for such unbelievable pain must have a finite quantity in some hidden personal reservoir and you just used up way too much in the last 30 mintues. This is not good. Something is definitely wrong here. Cluster headaches ? At this point, you have never ever heard the phrase, never heard anyone mention it, talk about it, never read anything, never saw anything on the 60 Minutes TV show. Headaches, well, sure, everyone knows about that. Migraines, yes, of course, I know a little about that, heard some people talk about it. So, that is it, I just had two really bad migraine headaches. Really bad. Oh man, those poor folks who have had them a long time. So, off to the local drugstore, get the biggest bottle of Excedrin Plus Plus and whatever else the brightest labels say to take for migraine headaches. Okay, now we are a little bit ready. Oh yeah, I remember something about triggers for Migraines like alcohol, wine, chocolate, a bunch of things. Let s see, okay, none of those things for a while, for sure and how about the idea that you noticed that your sinus ran when you had the pain ? Better get some sinus pills . And how about stress: you have been worried about some things at work, the traveling coming up, the big meeting, where to take the wife for your anniversary, getting the house painted, fixing that damn fence out back, inviting the new neighbors for dinner, calling back your old buddy who left you a message a week ago. Yup, have to attend to those things, cross them off the last- not worry about them. Less stress, take it easy and just cruise for a few days. Not let things get to you. Give the brain a little rest, some much needed R & R this was a signal slow it down a bit- switch off the ole brain, put the worry machine in the garage, watch what you eat and drink and do. Maybe too much time in front of the computer screen , yeah, way too much eye strain- that s probably exactly it- the pain in right in my eye- so too much strain there- voila ! case solved , a few days off , easy on the eyes, don t read that book in bed and everything will just run it s course and be just fine. 6:45 p.m.- on the way home from the grocery store two nice T bone steaks prime for grilling, weather is pretty decent, a couple baked potatoes, and a great salad. That should be good, right ? and good for you. Protein, fresh veggies, simple. No dessert or alcohol tonight, just a nice healthy relaxing dinner. Gotta stop and get gas as you pull into the self service. Nozzle out, gas cap off and pull the handle. The slight fumes hit you and seem to go right to your brain, a muscle in the back of your neck , the same side, twitches again and you think you feel a shadow rising just above your right eye, Not another one ?? Think hard , is it real or just a memory of the earlier one. Thinking about it makes it happen or so it seems and the pain starts to blaze, like throwing a match on a barbecue that has been over doused with starter fluid except there is no Whoosh just the stab, the growing pain. You eyeball has to be coming out, someone is taking it out , manually and you stand there and pump gas while your head feels like an invisible man has the white hot poker and is slowly pushing it through your eye and he is smiling. You drag yourself back into the car almost unable to tolerate the pain. Should you drive ? Did the gas fumes trigger this, maybe something in the grocery store- ya know those lights were really bright and you had to read that one label in small print and maybe strained your eyes. What the HELL IS IT !. You close your right eye because the pain is so great and drive, get distracted, think of something else except this pain. Be careful you are driving with only one eye. You almost want to laugh but you really want to cry, no, what you really want is for it to just stop. Okay, the last ones lasted about 30 minutes- glance at the clock, it s 6:52, so just hold on till what , say 7:20 and it will be okay, it will go away, just 30 minutes, like the long run where you just told yourself another half mile and with legs burning and breath gasping you made it- you can always make it time heals all. 7:15- and you drove endlessly around your block, for some reason not wanting to stop but to keep in some type of motion, keep busy, thoughts on something else other than the pain. Looking at the clock repeatedly, willing it to go faster, believing that time is the answer it can only last so long and sure enough you feel a slight recession- is this just a fooler or is it really going away. Yes, you feel the drain statring like water in the tub swirling down and away taking the pain with it. 7:27 all is good, like nothing ever happened except you feel like hell but so damn relieved that there is no pain not much else matters, the steak dinner does not seem to have the same appeal as it did an hour ago- your appetite is not that eager, but well, you have to eat. Thank god I have a propane barbecue because maybe the fumes from starter fluid could cause another headache. Oh yes, we re okay now. But shit, that s 3 today already about 4-5 hours apart, so it is now 7:30 so maybe , what like 11:30 or 12:30 for another one ?? The thought of going to sleep tonight is beginning to get almost scary- yeah very scary. The steak dinner was actually very good and you willed whatever protein and vitamins it all might contain to be a medicine, to make your mind right and to feed whatever beast in your brain wants and to keep him happy very happy. The idea of going to sleep looms and the possibility of what happened the night before is way more than troubling. You watch a little television, half the time with your right eye closed for no reason other than you think maybe you should give it a rest or that it might be a trigger . You are exhausted from what has been a not so ordinary day and you think that your body must be going through some type of hell from all the pain you believed you have endured over the last 18 hours. Every little thing matters, the way you sit on the couch, maybe a nerve in your back is causing these things, maybe the angle of that lamp over there on the table, maybe maybe , maybe. Okay, 12 a.m. , just really cannot stay awake any longer. Maybe a few aspirin before bed and get the bottles of aspirin and sinus pills ready- those stupid child-proof caps off and ready for action, all set up in the bathroom in the bedroom, cup for water nearby. Off to bed, pillows just right , back straight, Now relax, get some sleep, good sleep, no pain, wake up in the morning and all will be good. Time heals all. Close eyes, think of sleep- but it does not quite work that way. There is a foreboding, a fear that is there- a helplessness like a lamb to slaughter. You are nervous, no strike that, afraid- like the night before your first public speech before a large crowd only this time you cannot just picture then all sitting there stark naked and all you think about is possible pain and then you must stop thinking about that because, maybe, just maybe, that can cause it- the power of the mind. Eventually you fall asleep and right on cue as if the alarm clock was set years and years ago, the pain wakes you from that so sought after sleep. This is not just the pain fairy- she brought her whole family to visit tonight and they all brought their Mikita 14 volt drills loaded with the quarter inch bit and are very very busy boring right into that right eye and not trying to be neat about it. Covers back, right to the bathroom, pain just whistling now grabbing the aspirin bottle. Shit, this is bad, way bad, starting to almost panic. A thought maybe grind the aspirin up, yes we have one of those pill grinder thingys- screw off the top- harder with one eye closed, put in 4 , hell make it 6, turn the top down to powder them, run the hot water, yes that should dissolve them, pour the powder in, mix it up with the toothbrush right there and then drink it. It taste terrible, hot water and mashed aspirin as I gulp it down feeling the residue it leaves in my mouth. Feeling sick from it- willing it to start working RIGHT NOW and stop this. But it doesn t stop. Shit, start walking- downstairs into the darkness, hoping not to crash into anything into the back room. There is a pool table there I reach and find the edge in the darkness and start walking holding onto the edge, start counting how many times I lap it- 5, 10 15, 20. God, I forgot to look at the clock- so how long has it been- I need that frickin clock ! I need to know how long, to have some faint hope of when it might end. I feel like a prisoner-or-war in my own private concentration camp with a faceless tormentor. Keep walking, moving, eyes closed, try to outrun him , get away as he bores through my eye, deeper and deeper. But I don t know what he wants. I have no secrets . On lap 176, my legs give out , I slump to floor and mumble I will tell you anything . The pain ebbs away. I think I should have said that earlier,, maybe it would have worked That routine lasted for 5 weeks on the first episode in varying degrees. I still had no idea of what cluster headaches were or even existed. I endured the pain and examined every single aspect of my life always thinking that for everything there has to be a reason. A tangible reason that unlocks the mystery and provides some insight as to the what and why of these things. Sadly, other than virtually driving myself crazy, I found no why, no what, no real cure other than starting to believe in things way beyond what is natural and that the beast was probably a real life Stephen King character and he alone knew the reason. When the headaches stopped, they just stopped. One day, nothing happened. It was like having walked for miles and miles in a fog and then all of a sudden I am back at home and life is the same as before in texture and appearance and after 3 days of no pain it was all like a bad dream except it was not a dream it was real, as I would come to discover every year. Sometime after and before a new episode , which was about 10 years ago now, I saw my doctor and during a annual physical exam described what had happened. He had little knowledge about these things as being a G.P. but did get me to see a neurologist who specialized in headaches. I was very able to describe in great detail of the pain, the episode and everything I could think of. Within several minutes after my description, he diagnosed them as cluster headaches a classic case of a very rare malady. I underwent MRIs , pulse imaging and a battery of tests to determine that it was not a brain tumor or such abnormality. I have tried Verapamil and various drugs which all seem to work for a little while then become ineffective. Imitrex works and is a godsend only because of just that and although it is scary to feel it course through your system, make you tingly and uncomfortable, I picture the old Pac Man game as it runs after the beast through the maze of my body and eats the beast, even if only temporarily- as the beast seems to have an endless supply of quarters and that he alone knows where the Play button is. When the pain free days are there which luckily seem to be about 10 months a year give or take, there is no equalization, no you ran a good race and been through hell and now here is your reward. Rather, it is back toa life that was rudely and most painfully interrupted, causing you to fall behind in many things in your life both personally and professionally and leave you with an irritability that is both unknown and unwelcome to many. If that is a test, it is a good one, a real doozy, and hopefully builds character and an understanding of others who are in similar pain or distress and creates a true empathy to share with them in their private trials. For those who have never had cluster headaches May the Force be with you and I honestly and sincerely hope that you will never ever have a visit from the pain fairy and beast. For all who have those visits, be safe, cherish the pain free days and collectively hope that one day they will figure out what causes them and affect a cure. And make it affordable for all to have easy access to.
Ray <ray4903@comcast.net>
Seattle, WA USA

Hiya I have just found this site and think its amazing, i have suffered from clusters for 11 years now, they first stared when i was 12 but i did not get diagnosed until i was 20. I am in my 3rd week of a bout and finding it realy hard. I have read a load of your stories and they seem realy sevear compaired to mine, i get the stabbing pain in my eye, sone neck and pain on the one side of my head although its not to much severe as half of yours and i am hoping it dosent get worse. Hope everyone gets well soon. Catherine
Catherine <katielovesjoke@msn.com>
Glasgow, Scotland

I am 21 years old and have been dealing with these headaches for almost 3 years. I moved to Colorado from Kansas so when they started, I thought maybe it was the elevation and that it would go away. Wrong. The first really bad one I had, my mom took me to the hospital because we didn't know what was wrong. I was crying hyserically and was vomitting. I couldn't control any of my emotions because the pain was unbearable. When we got to the hospital, they ran a few tests (CAT scans, MRI and a spinal tap) and couldn't find anything wrong. So they pumped me full of drugs and sent me home with Vicodin. That seemed to be what every doctor did. I went to nurologists, specialists, headache doctors, everyone. No one knew what they were and no one knew what to do. I learned to self-medicate by using ice and about a bottle of asprin. I finally became immune to Excedrin. About a year and a half later, I went to a regular check up to my OBGYN. During my visit, I had an "episode". She asked what was the matter and I just started crying uncontrollably. I had to leave my visit to go home and lay down. A few days later I got a phone call from my OBGYN and she said that she had done some research on Cluster Headaches and thought I might have them. She said that Oxygen Therapy was one way to subside them and that there was a medication called CYPROHEPDADINE (I may have mispelled that) that would help. Boy did it!!! I don't know if I will ever be able to thank her for actually researching this and not just sending me home with Vicodin. I was on the medication for 4 months before I became free of these headaches. Every now and then I might have a flare up but they would just be a regular migrane or headache. But I would just take my medication for a few days and then they would be gone. About a year ago, my Uncle became really sick and they couldn't figure out what was the matter with him. My Aunt said that he was having really bad headaches and that the doctors had him on about $1,000 worth of medication and nothing was helping. I asked her about his symptoms and she described the key symptoms to cluster headaches. I told her about the medicine that my doctor had perscribed to me. About 3 weeks later, she called me and said that she had taken my suggestion to his doctor and they tried it. He wasn't sick anymore and the blunt of his headaches has subsided. Everyone, if you have had a retard doctor that hasn't done any research on this medication or hasn't suggested it to you, suggest it to them!!!! It works! I keep a few refills on hand at the pharmacy for emergencies. It's not expensive (even if it was, it would be worth it!). It's a tiny white pill that you take 4 times a day. I swear by it. I haven't had a Cluster Headache in over 8 months and I sleep more, work better, and are able to do a lot of the things I couldn't because I feel great. I do watch what I eat.. I stay away from headache and migrane triggers. No caffine!!! But I feel great and that is what is important.
Lesley <Notinkstoto@yahoo.com>
Colorado Springs, Co USA

This is my first posting to this web site. My husband has had problems with headaches all of his life but about 1 year ago the nature of his headaches changed. Last fall he was diagnosed with cluster headaches. He was placed on Depakote and titrated up to 5oomg of the drug which seemed to get the headaches under control. Now they are back again, full force. The descriptions that I read on this web site describe his deadaches precisely. Monday evening, when I got home from work, he was miserable! He had already taken a Loritab at 2:30pm followed at 3:45 by two Bufferin. When I got home at 6:00pm, he was still in agony! Fortunately, we have a neighbor down the road who also suffers from cluster headaches. This neighbor is currently in remission, fortunately. My husband, Burr, begged the neighbor, in tears, to bring a tank of his oxygen down for Burr to try. Burr did use the oxygen and found relief. He has used the oxygen twice since then, finding relief both times. My husband is 65 years old and is on Medicare. We also have a Medigap policy but the Medigap policy will not pay on anything that Medicare does not pay first on. My question is: will Medicare pay for oxygen therapy for cluster headaches? The two oxygen providers we have called both say Medicare will not pay. Medicare says they will and the Medigap policy says they will pay after Medicare pays the 80%. Does anyone know for sure? Burr has an appointment with a neurologist this afternoon.
Michele Smiley <mcksmly@yahoo.com>
Williamsport, IN USA

it is usually around 2-3am when the grim reaper calls me for our hourly visit. he awakens me from a deep sleep with this stabbing pain in the left eye--and a ringing in the left ear. i crawl to the oxygen tank and inhale--by this time it is too late--it does not work. i rock back and forth moaning and then screaming. i pace walking into furniture for my balance is off knocking over glass items and picture frames. i then begin to bang my fists on the hardwood floors until they are black and blue. then i bang my head against whatever is near and hard trying to release the pain. i cry like a newborn looking for food--it hurts so bad my eye wants to pop out of its socket and i am stabbing at it trying to get it out. then finally the reaper has had enough laughs and leaves about 30 minutes to a hour later--saying see ya tomorrow night possibly before then. i am a 28 year old female and i have clusters--inherited from my father who has had them for 32 years. unfortunately i cannot take ANY medication--i am trying to start a family and the medication i was on (dihydroergatamine--needle form) causes miscarriages. by the time i pop a percocet in my mouth and it works it is gone so why bother. if i feel twingy during the day i will remain hitting the oxygen tank and then take a warm shower and turn it ice cold to cool down my system. i am embarrased of my behavior during this cycle--i mean i act like a crazy person--begging people to kill me. i dont dare call the cops or ambulance--i work with these guys and i dont think that they would understand. i had to ask a dispatcher to put down that i was combative so that the officers who do come should i call know to stay away--i also informed them of the face swelling so that they do not arrest my husband for abuse--for it swells and looks like he used me for a punching bag. i also notified the fire department of the oxygen tank in case of a fire--for their safety. i thank you for your website for i was fearful that i was some lunatic who acted crazy--reading your site tells me i am not alone in this--thank you.
erica <pureevil9@comcast.net>
USA

I've been a sufferer for the last 14 years. My last remission was over 2 years and I though that THEY were gone for good. No such luck. Glad to see that there are others willing to share information. Keep it up.
Don Trooskin <Don@Trooskin.com>
Shadow Hills, CA USA

I am a 28 year old chronice cluster patient who has been dealing with them for 5 years. Unlike most cluster patients I get 99% of my clusters in the middle of the day. But I also get them every day. I have read alot of what others go through with night clusters and I understand as I have had some occurances and that is the worst, to be woke up from a dead sleep with a cluster. I have 2 young boys that are 3 and it is sad to always hear my son ask, dad do you have a headace? The problem with this type of headace is that it does not only affect yourself but it also affects your family. I have tried multipule medications to keep from having them but the only thing that helps is the steroids. Unfortunately you can only take it for a short time. Maybe one day they will have a cure for those of use who suffer from such a horrible pain.
Nathan Suddarth <nsuddarth@comcast.net>
huntington, IN USA

Hi, My clusters started when I was in my last semester at school. It was, typically, a misdiagnosed condition that lasted most of a month. I had one doctor say it was encephilitis, but there was no swelling. I had one say that it was, probably, just a really bad migraine, and put me on Zomig, but it didn't kill it. It stopped, then, and left for two months. They thought it was just a little misalignment or a tendonitis until it hit again. At that time, I asked a headache doctor what it might be, and he asked when it started. I told him, and he diagnosed the cluster. Most of the time, it's just an annoyance, but there have been times I've wept, wanting to bash my head into a wall. There've been times I've wanted to go to the ER, but I know that it really won't help me. I did have one thought, though, as this last period hit. What sort of research has been done in regards to diet/exercise/ect? I'd like to know. And it's really nice to know that I'm not alone in my suffering. My wife tries to understand, and she does since she suffers migraines, but not completely.
Ben <BenThurber2002@yahoo.com>
Fayetteville, AR USA

They're back and I'm afraid! It's been 14 years since my last episode of attacks and I can honestly say that I am scared to death. I've suffered four major bouts of Clusters and the last set landed me in the hospital for ten days as a patient of Doctor Saper in Ann Arbor, MI. Anyway, I'm 41 now and could share a story or two or three about the nightmare of these monsterous headaches. I am glad I found this site because NOBODY understands what I am going through in my social circle. I hope I make it through these with no major drama, in fact I pray that I don't.
Lou Aquilina <louaquilina@sbcglobal.net>
Detroit, MI USA

I have been a cluster sufferer for over 20 yrs.I went over a year without a cluster until recently and I think I've found something that works and I know any doctor will give it to you. It's a Lidocaine patch that comes in a box of 30.You can cut the patch to fit.The lidocaine is a 5% solution. I cut the patch too fit to the top and right side of my eye where the most intense pain is about 2 inches wide by 4 inches long.The patch last for 12 hrs.I had a cluster coming on the other night and applied the patch;getting relieve in about 5 to 10 minutes. I had been waking up about and hour after going to sleep every night with a BAD CLUSTER.I slept all night with no headache while I wore the patch to sleep in. Believe me when I say I have tried everything.This is simple and It worked for me.HOPE this will help you too. Love you guys.
Ben <annie54@alltel.net>
Lexington, sc USA

ive sufferd with cluster headaches since 1986,i use imatrix shots-im wondering how to prevent them ,i cant take it anymore
Jeff Ladew <jandtladew@arvig.net>
USA

hello.iam 50 this year.i got my painful introduction to clusterheadaches about five months ago,i dont seem to leave this site for long since finding it.great to know its there.
andrew bunting <andrewjb.1@gmail.com>
london.u k, u k

When I discovered this site and read through the material, I cried. Already had CT scan, Xray, dental appliance, allergy tests, and much more - none of which found any problem. Antihistamines (loretadine) seem to help me - I have been taking them daily. My neurology appointment is scheduled a few months from now. Although I am now fairly confident that I am a clusterhead. And I will be trying whatever prevention and management tips I can use from this site. Eager to hear what the neurologist diagnoses. Wish me luck. Pat
Patty <mcfirth@gmail.com>
Lanark, ON Canada

Hi fellow clusterheads. Checking in, after several years absence from the site. Just now at end of 3 month cluster - after a 2 year remission. DRAT. So much for "aging out" of CH! I'm 56, had this curse since age 21; first clear diagnosis about 5 years into them. Episodic. Have all the "classic" CH symptoms, without any masking or overlapping syndromes or symptoms. Often 6 - 8 attacks/day, around the clock, in more serious clusters. Always nocturnal to begin with, in recent years, during milder clusters, I am usually attack free during the day. The clusters seemed to last longer, & pain level of attacks increased, through my 30s, until I was nearly chronic; backed off somewhat through my 40s; 50s have been better overall, especially with the oxygen I started using 6-7 years ago. Went through ALL the medications over the years, with no success at all. Grateful to have been in on the clusterhead discussions (on this site, when it started) re:oxygen - and it was a godsend !!!! I notice it's still a challenge to find competent MD help for lots of folks. Gotta just keep trying until you find the right MD, that knows his/her stuff. Well, I'm still here above ground, still have CH after 35 years, and believe completely that as bad as these demons are - - life in general is VERY much worth learning to live with them. If I may be permitted a couple suggestions: (1) Don't count on a miracle cure tomorrow (I believe in the theory that it's an actual physiological/biochemical defect in the hypothalamus) - so, start adapting your life today by accepting this malady objectively, as a general condition of your life; and set out to learn all possible techniques to deal with the individual attacks - then just go where life takes you (follow your breath, as they say) My biggest misery was from trying to build/live a "normal" life, as a clusterhead. (2) Don't underestimate the connection between alcohol and pain frequency/intensity - there's always an exception that proves any rule - but alcohol of any kind, in any quantity, is pretty near guaranteed to intensify the attacks; if you're a drinker, and SERIOUS about reducing your CH problem, firmly put the plug in the jug during a cluster - it is the most common way people with this disease torture themselves. Best of luck to all - Gary, "the cranky yankee". PS - any clearly diagnosed clusterhead in SW Maine or eastern N.H. who needs/wants to touch base for sharing info & experience w/CH is more than welcome; just email me.
Gary
ME USA

And so we meet again. Last night I was rudely interrupted from a peaceful sleep, confused at the onset of a curiously strong headache. I wimpered, tossed and turned, hoping the find a position that would relieve the pain. I muttered "Please God, please don't let it be another cluster". But the pressure was steadily building, and I knew my clusters were back. I resumed my old position of sitting cross legged on the bed, rocking back and forth furiously, beating my right temple, crying hysterically, and begging for it to stop. As always, the cluster came to a climax and then slowly subsided, I slowly calmed down, and fell into a deep exhausted sleep. When I awoke, I made the trip down to the ER. I was tired, cranky, and feeling alone. My husband was dreading the costs. I have no insurance, we're broke. "But I don't care" I tell him, "I refuse to go another night with these clusters". "You can never understand how excruciating these clusters are, or how terrifying they are. But you do have some idea. You were there when I had my first bout in 1999, I was 7 months pregnant. You were there when three days later, minutes after a cluster, I went into premature labor. And you've been there when I've had one or two bouts every year since then. I thank God, because I'm one of the lucky ones. I took my baby in for her check-up a couple days after she was born, and asked the pediatrician about the headaches. She immediately knew they were clusters. I'm lucky because with each bout, I am put on a Prednisone dose pack, and it always immediately supresses my clusters until the next bout. I'm lucky because I am able to find relief whereas many cannot. Even though I understand the pain, I cannot imagine being without my temporary cure, and being forced to wait night after night for the dreaded beast to come. I find comfort in this site, because I know others understand, and others know I'm not exaggerating about what I say is easily the worst pain I have ever endured in my life.
Mandy <mandymarie96@aol.com>
NC USA

Hey, Its been 6 and half months of PF.It was my first attack and lasts 3 months in 2005. Some shadows are coming and going in these days. I am really scared. I am praying to God everynite to take this away from me. I am scared that I again wanna die when it comes back. I was planning to get pregnant but now I dont think I can handle this with my pregnancy. I hope the cure for this will be found soon. And I am also jealaous, because you guys can get together in US, but we dont have a organisation like this in Turkey. It should be relieving. Well, I feel very down today. Sorry for my pessimistic message. PF days to all.. warm regards,
Nihan <narisoy@limak.com.tr>
Izmir , NA TURKEY

I have always suffered with regular migrane headaches ..but I was recently diagnosed with cluster headaches. I am hoping to find some answers here as to what works for this intense pain. I am finding myself living in fear of getting the next attack. I feel so helpless. It's hard to believe that so many are suffering like I do and there is no exact method of treatment. Trial and error...just makes it all the more frightening to me. T Y for listening and any suggestions you may have will be greatly appreciated. Judy
Judy Fiore <jlolarico@aol.com>
North Providence, RI USA

I like many of you, was diagnosed incorrectly, and have been treating my Clusters as Sinus attacks up until 1 yr ago. I came across this site purely by chance. I can't tell you how relieved I was to find this site and find that the pain I suffer is shared by many that can relate to what I am feeling. I have read the message boards on this site, and find so much comfort in you all sharing your feelings, pain,anguish,and treatment suggestions for what we all suffer through. I am a 46 yr old female from Canada that suffers an attack once per day, every day for over 1 yr. Up until 8 mths ago, I never even heard of Cluster Headaches, and most doctors are unfamiliar with it as well. It was my own research in determining what I was suffering, and your site that helped me determine my condition. Doctors and Neurologists have confirmed the same and I have been prescribed verapamil as a preventative. Have been taking 480mg per day, seems to cut the attacks from 7 per week to 4, but find when one attack is missed, the next is a 10 in the kip scale. Takes me everything not to call 911. Like many of you I am afraid to go to sleep, afraid to have a glass of wine. Social activities have decreased significantly due to the fear of having the attack outside of the house. The verapamil seem to have some preventative qualities in comparison to taking nothing at all. Will be increasing the dosage to see if any further improvement can be made. Many Thanks to all that contribute to this site. It helps to know I am not alone, and a great support life-line. Roses on your pillows. Diane from B.C. Canada
Diane <di_mohr@telus.net>
Surrey, Canada

Hello everyone, I just stumbled across your website. I hope this don't sound bad but, but it was sure nice to see that there are others like me out there. I'm a CH sufferer for about 24 years. Until recently I didn't even know what my problem was. I'm still not 100% sure, but reading some of your letters moved me to tears because I was seeing myself. I'm still awaiting todays demon, but there is a perverse comfort in knowing that some one understands. Cheers to all!
Bruce <FBNoseworthy@shaw.ca>
Maple Ridge, Canada

I would like to make contact with any other sufferers living in South Africa.
Sue <suem@milpark.co.za>
Johannesburg, South Africa

Welcome! Please tell us your story about cluster headaches, and read up on all the great information here. You may find something that can really help you. If you still have questions, check out the message board. That is a great place to get some questions answered or receive support from other cluster headache sufferers.
Patti
Madison, Wi USA

what a fantastic site,i have suffered from excruciating pain of cluster headaches for over 20 yrs,often being told they were sinus related.i now take zomig;zomitriptan,what a miracle it works for me.
angela blanchard <angiehb@toucansurf.com>
bude, cornwall united kingdom

I have been a clusterhead for 20 years. This is my first time to leave any comments. I am very cautious in sharing this part of my life and the suffering that goes along with these headaches, but I have gained courage in reading many stories found here. Other people just don't understand.Thanks for giving a place in which to share our stories. It has made a difference in my life. It has probably had a hand in saving my life.I have checked out this site over the last few years, but I was in remission for the last year and 9 months (don't talk or think about them and they won't come back, right?). Before that I would read stories posted on the site and be encouraged that I was not alone. I was possibly at my lowest during that episode before the remission. Then came Decemeber the 10th. It is now March, and I don't see the end in sight. I have never had an episode last this long. I will experience a few days of "freedom" and then, Wham!, it is back. The medications became too much and now I only use Oxygen. Not to convienent for a husband, father of three and a school teacher. I am surprised that I have kept my family or my job this time.My moods have been sharp and severe, and I am worn out. I'm just tyring to make it to Spring Break. Thanks again for being here. Bill NT
Bill <bbaldyjr@yahoo.com>
Little Rock, AR USA

Hello everyone. My name is Henri and I have been suffering from CH since I was 20 (now 35 years ago); but only 8 years ago it has been diagnosed as CH. My present clusterperiod has started in january 2006, but I think I have had the worst part of it now. Since I was 50 the clusterperiods have been recurring every two years, so now I hope to be painfree untill 2008, and then it will start all over again. I have used prednisone to break the cluster, and I think it has been reasonably succesfull. In addition I use oxigen (7 liters during 10 minutes) and also Maxalt (rizatriptan 10mg) melting tablets, in order to relieve the attacks. As a result the attacks have been less painfull (level 7 in stead of 9 or 10 on the skip scale). If you want more information about Maxalt, please let me know. Greetings from Holland.
Henri Geijs <hg.geijs@planet.nl>
Spijkenisse, Holland

Been in chronic state for 6 years now,need a 'fix' soon!!!GP's seem to be useless,anyone got a new untried trial,i'll try anything
Steve Leary <steve.leary@talktalk.net>
Warrington, Cheshire UK

I've been a Cluster sufferer since I was 14. I'm 33 now. I'm glad there is a website for current info on this. My pain never goes away when I am having an episode no matter what new drug I've tried. Faith in Jesus Christ has been the answer. I still have pain, but I know that He endured more pain than I can possibly imagine so that I will ultimately, someday have a pain-free life in heaven with Him.
Jesse Shuster <jesse@centralvalleybaptist.com>
Nampa, ID USA

Hi, I am in the middle of my 7th day of my first attack. My docs have diagnosed ch although I am waiting for an MRI. Thia site is a godsend as I felt like I was going mad. You have answered so many questions and I thank you all. For those who have had this for many years, God bless you! I will certainly be back.
pauline <pops365@hotmail.com>
perth, Scotland

I have had these things sin my teens. The Docs thought it was sinus probs. Finally, found out about cluster headaches. Lucky for me, my wife has worked in the medical field. I try to hold out when the pain starts but she always knows. Wish more Docs knew about this. The few times I went to the ER I was treated like a druggie. Once told the Doc that I would sign a consent form if he would knock me out with a hammer. Think I got his attention. Thanks
dsimpson <heavyd@tecinfo.com>
USA

i'm glad i'm not alone and just happy to find a place where people truly understand the suffering and disruptiopn it can cause to your family life.
bunnylo <mrfrnswrth@hotmail.com>
c harlotte, nc USA

My name is John> I have been inflected by the Deamon since i was13, I am 41 now> It started as episodiac at first.For the last 10 years its been chronic up to 5 times a day at times. I have tried evry thing,every medicine listed.Every therapy that been thought of.Including nerve blocks and Botox. I hate to admit it that the only relief i could find came in the form of narcotics. to the point that I have become adicted.That is a different deamon that I will deal with next.I could tell you about the pain and the sleepless nights, but true suffers dont need any further depression. Thats why i have nevever approached this site before. Reading the stories here just reminded be how misserable my life really was. Anyway I am here now to share GREAT NEWS. ihave volunteered for some experimental procedures. First was oxcipitial nerve stimmulator. It involved surgery and finding a Dr. who would do it. the results were promising instead of 5 times a day I woud only fight the deamon occasionally. However the stimulator migrated, and work its way out. which meant more surgery. Next I convinced the Dr. to try Trigenimal [sorry about spelling] nerve implant. Which I thougt would target the effected area. This was done Feb 2. The results was not imediate,but eventulaly relief was felt. I KNOW ITS ONLY BEEN A SHORT TIME, But the feeling inside cant be denied. I HAVE BEAT THE DEAMON. True swuffers will know what I mean. I am willing to share details DR. names,hospital, type of stimulator,etc..JUST EMAIL ME. JohnandTabitha@fuse.net. I HOPE THIS HELPS EVERYBODY. Dont give up DONT GIVE IN.THERE IS A CURE. Your friend in pain John.
john <johnandtabitha@fuse.net>
cincinnati, oh USA

Hey All, it's been 2 years since I've been here and hoped I'd neverbe back. I've been reading the boards for about 2 months now. I think and hope I'm at the end of this episode. I'm 54, had my first CH 6 years ago, came in the fall, lasted 1 month, 1 HA each night about 1 hour after bed, same thing following year, skipped 2 years and episode started in the spring, this time I brought my Dr. info from this site and he started treating me for CH instead of sinus infection. This year it got me in the winter. Thank God for all of you and this site. Some days I read it and get full of hope and other days I'm almost in tears.
Denis Jay <dejay66@hotmail.com>
Baton Rouge, La USA

Hi All.. I been a patient with those headaches since 87 in New Jersey. I have done every med there was over 200 and been in and out of hospitals with no help. Would leave with the same one i went in with. But about 8 yrs ago my Doctor in NJ try me on this new med called zomig.. WOW it works the best. I mean if i take it 60 percent it helps that is the best odds ever for me. But cost well insurance only give 6 per month and with out it cost almost 200 for those 6. So i don't take when i need to so i can save for the worst which isn't right. We as holders of this sure be able to get help. No one understands until they walk in our shoes. I would die first to get rid of the pain i mean it. I tried every thing . I would hit my head against the wall to make it go away.. I now live in Florida not a good place for us who have this causes the sun also set it off. But no choice at this point. Can't miss work ever not a reason to call off as per bosses.. Well now that i share some of my points of view will leave more later.. Good luck to all of us.. Pls try zomig really it works the most it comes is 5 mg but try it... PLEASE.....
Debi <njgirl1356@aol.com>
Hobe Sound, Fl USA

I have been watching this site for 2 months now. I have been a sufferer for 15 years. I have found much comfort here. Thank you.
Amanda <amanda06dallas@yahoo.com>
Dallas, TX USA

Hi. I was afraid when I suffered this. Mi first event was when I was 20. I felt like a cold iron trying to leave from my right eye. Now on February began my headaches. between the 6am or 7am, lasting 1 hour. Is awful to me, cause i did not what was happening to me. I have been so during two weeks when I decided to go to a doctor. He told muy I was a Cluster headacher. It was terrified to me to be a "lucky man" with this... Well, I hope be relaxed and wake up and don't have that pain... Thank's
Martín Delgado <madeza@gmail.com>
Arequipa, PERU

This is a great site !! I was just diagnosed today after my primary dr. finally gave up on why I couldn't get rid of my headache. I was seen by a specialist today and he knew what was going on. I had never heard about this kind of headache and it's great that I'm not alone in this. The information on this site has really answered some of my questions and my husband has now apologized to me a 100 times since he sat and read some of the info too. I will be doing a lot of reading on this site to get more familier with whats going on with my head.
Tanya <TanyaLWarner@yahoo.com>
Wickliffe, OH USA

This is all new to me. I'm 29 and I just started getting these about 3 weeks ago. I thought I had a brain tumor or something. I have a really high tolerance for pain but these have been absolutely absurd. When I woke up yesterday I thought my eyeball was going to explode...literally. It feels like someone stuck an ice pick in my temple and pumped fluid in my eye until it is ready to burst. I just went to see my doctor for the first time today. I never go to the doctor, in fact I truly cannot remember the last time I went to see a doctor for something that wasn't in an emergency room. When my doctor told me she thought I was having "Cluster Headaches". I thought she was out of her mind. I didn't even know what the symptoms were but I was sure she was crazy. I figured when I went to see her next week she would look like a fool when she ordered my CAT scan/MRI. I don't think the title "Cluster Headache" even begins to describe what this is. I was thinking a name more like "Mind Bomb" or "Splatter Brain" or something much more painfully descriptive would suit us better. For those of you who have been dealing with this for many years I'm sure I sound like a short time winer. All I can say is, "You are all very strong for lasting through this as long as you have." Stay strong, Rick
Rick Harrison <rcharrison7@sbcglobal.net>
Crete, IL USA

Hi, my headaches have just returned after a four year absence, this seems odd but they are at their worse on a tuesday night and by friday night the pain is quite brief, coming back with full force the following tuesday. When a headache occurs I pace at an alarming rate, I suppose I do it to take my mind of the pain but ofcourse it never works.
mike sallows <mike@sallowsglb.fsnet.co.uk>
weymouth, england

This site has not only been great as a resource of information for me, a ten year sufferer, but also as a source of understanding for my wife who has watched me suffer without realizing that what I do when the demon takes over is real and that I'm not being melodramatic about it.
Ron Gehret <rgehret@midmark.com>
Versailles, OH USA

Well hi everyone it s 06 One more year with out Custer headaches I guess it true when you hit 40 they go away I'm living proof THANK GOD!!! The years i lost to clusters it was the battle of all battles I got shot at lest six to ten times a day I must have tens of thousand of bullets in my head Everyone one i can remember like it was yesterday This shit is the beast god never meant this to happen to anyone about that water thing I think that the way to go Screw the pills they never work they only hurt you more Try lying in water at your local watering hole three times a week It worked for me It was the first time my headaches stopped It must have had something to do with cooling down your temp Ice is to cold you can t use it for long time swimming water is just right Well got to go for know but i will be back i always do im in here on this site for life
john stockwell
greenville, NH USA

It's great to finally talk to people who understand what i go through when i have these damn things. No one knows. I hope one day we can go to sleep and now that our dreams will oneday be sweet!!
Josh Erickson <j_erickson85@hotmail.com>
St. Cloud, MN USA

I found this site this past weekend glad I did. Started to think i was the only one out there. Been have CH for about 18 years now, only been the last 5 that I have been treated for CH. Have tired many med. seems that only imitrex injection works to stop the attacks. But I can not find anything to stop them. I was pain free for almost 2 years after a blocker shot in the back of the head. At the begining of this year that all stop. The monster was back, nothing seems to work more than 2 or 3 days. My doctor has suggested the cutting of the nerve under my right eye, to numb that side of my head. My question is has anyone else heard of this or had it done? Once again thanks for this site it helps knowing I'm not alone.
Blaine Alderman <metalman309@aol.com>
Bradenton, Fl. USA

I'm a 24 year old female sufferer. I had my first attack about a year and a half ago on an airplane. I thought I was going to just fall over and die, and no one would know what to do with me. Each attack is getting more intense and last about two hours. Two hours of absolute hell!! My Mom tries to help, but nothing anyone does can help. I definitely feel that no one in my life understands. When you say I had a headache, they all think, oh that's no big deal. But they will never understand. It's so frustrating. All I want to do is go to sleep in hopes that it will all go away, but I'm absolutely terrified to do so. Will it come back? Will I be subjected to another night of living hell? When will this all end? Why me?
J-me <jamilynne44@yahoo.com>
San Carlos, CA USA

My name is Jason, im 33 yrs old, first had my set of cluster headaches at age 10, and they still come. My headache cycle begins with short slightly painful headaches about 3 days before they become severe, i've been through it so much that when i have the short ones i get my meds together and make sure i have them with me all the time. I usually have one to two major headaches a day with fewer mini headaches i call them, not painful enough to waste an immitrex shot on. I have had the headaches for 23 years and never vomited b/c of one. The only thing that has ever given me any relief is imitrex, i can tak an imitrex shot and my agonizing headache ends within 5 minutes of taking the shot, usually in about 30 seconds, I am fortunate that it works. Prior to imitrex and especially when i was pre teen and a teenager there was nothing, just agonizing pain that almost cost me my life on one occasion. When i was about 16 years old i had an unusually long headache for me, about 3 hours, most last hour and half at most without imitrex, i loaded my gun and put it to my head and just couldnt pull the trigger, im glad that i didnt but i just didnt care at the time and all of us know how bad they are and you do lose the will to live b/c you hurt so bad. I just started a cycle about 3 weeks ago and i think im on the downhill slide now, i went the longest i've ever gone without a cycle up to this one, 3 years, that was a blessing. The only meaningful advice i can give to fellow sufferers is something that has helped me in the last 5 years, I dont give a shit anymore, if a headache comes i'll deal with it, if not, thats great, but the anticipatory fear of the next headache is almost as bad as the headache itself. Just go on with your plans, bring your meds with you, and if you have a headache find somewhere to sit down until it subsides, dont let it rob you of your life, and the headaches are scary, make you nervous, but i try to not let this happen, i just put the wet washcloth to the right side of my head and wait and as fast as it comes it leaves, dont worry about what people think. jason
Jason Pertuit <tweeter12351@yahoo.com>
Picayune, MS USA

I love this site but still scared for my next one tonight!!
sean pomahatch <seanpomahatch@hotmail.com>
st cloud, mn USA

Welcome! Sorry you had to find us, but I'm glad you did. Come on over to the Message Boards (link on the left), there are lots of us there to offer support and info. pain free wishes, nani
nani <nani36@hotmail.com>
Los Lunas, NM USA

I've been relatively lucky, with only two really bad sets of attacks in ten years (and some half-strength ones in between), but I thought I'd share what I find helps and what triggers them. For me the biggest trigger is very cold temperatures on my temples, although I think heat might also be a trigger. I agree with the entry about drinking lots of water - it helps reduce the number and intensity. Of course, once they really set in - well you know as well as I do! I have HUGE amounts of sympathy for you poor people who have these much more frequently. I pray for a breakthrough in treatment and prevention - for all of us.
Clive
UK

I'm going to be 71 years old next month (female) never had headaches to speak of, since the end of 2005 I now am having clusters. It's just plain awful. We hopefully ruled out temporal arteritis with an MRI. All my symtoms point to CH. Tried Topomax twice, bad reaction, now on small dose of Verapamil. Thanks for the great site, very informative. HK
Helen K <selecmod@hotmail.com>
Long Island, NY USA

Hi! My name is David and I'm glad I'm not alone with these damn things. I've been clustered for 10 years now, 1-2 months(Jan-feb) durations and last for 30-60 minutes. Nothing works that I've come across. Thanks for the Welcome. Dave
David Penna <dpdm111@yahoo.com>
Pompano Beach, FL USA

This is my work email. I don't have it at home. I'm 56 & can not remember not having cluster episodes. They used to be 14 months apart and now they are chronic with two weeks in between episodes.
Charlotte Williams <wllmsc@mail.co.stanislaus.ca.us>
Patterson, CA USA

Nice to know i'm not alone.Ive been suffering with ch for 15-years now
Todd
Avon Lake, Oh USA

Sufferer since i was 19. I am 36 now. 2 years ago I became chronic.
daniel vitale <klimt1969@comcast.net>
beverly, ma USA

hello i´m new to this site and my pain start this time on 12/24/05 and is still on 02/08/06 not to bad for the last 2 days portugal is the worst place in the planet to suffer from cluster ,all the time i need to go to the hospital ,is the same shit no doctor now about the cluster i suffer from cluster for 18 years love and peace to all of you carolas
carlos fernandes <carolastattoo@yahoo.com>
lisboa, pt portugal

I do believe that this is the worse pain that I have ever felt. I passed 3 kidney stones broke my hip in three places and a number of thing's but this is horrible . I feel sorry for anyone that get's these headaches. A cold towel helps on the back of my neck and my doctor has prescribed me fiorocet it seems to work ok after an hour or so. Most of my headaches are between 2-3 hrs.
Matt
Fredricksburg, Virginia USA

Hello,I came back again,but this time,not so pain.I use Nimodipine tablets in this period, it seems useful for me.It is the only one medication for CHs that I could buy in China.I use oxygen too.I thought that taking more medication would cause a side effect.
Kaedar Feng <kaedar@msn.com>
Kunshan, China

Suffering my whole lifetime of cluster headache I gladly found a doctor in Zürich-Switzerland three years ago. He was the first after about 15 different doctors who could tell me what I am suffering of. Since them I am the happiest man in the world. He advised me on oxygene and imigran (imitrex) and that always helped me to get off the pain. Great! I didn't have to fear the hard attacks anymore. At home I just need to take oxygene. On my journeys I always carry imigran injections with me. What a hell if it happens that I don't have one of these treatments available... The above mentioned doctor studied TCM (traditional chinese medicine) also. He told me what to eat to get off or to prevent the pain: cucumber, semolina with lots of cinnamon, shrimps, prawns, oysters, yoghourt (add cinnamon). It may sound funny but it really helps me. I found out a mental technique also: try to stop thinking! Stop it by feeling what is going on in your body. Go into the pain, don't fight against it. Feel all your body from your feet to your head what helps to stop using your mind. Try to stay in the present. Just beeing not thinking. Another trick that helps me: if the pain begins sometimes I start to do sports as running or walking. That helps me always. Last but not least:headstand!!! With much love. Patrick
Patrick <patrick@gutter.ch>
Zürich, Switzerland

Hello, I started getting chronic cluster headaches when I was sixteen and was told a couple of years later that many people with clusters grow out of them by the time they hit forty. At sixteen, forty sounded like forever. Now that I am going on thirty nine it sounds all too soon. I stopped getting the headaches cronicaly about two and a half years ago. The amount of time between bouts has increased each time. I have now gone over a year and hope this cycle continues. Back when they were first diagnosed in 1984, I travelled to a specialist in Michigan, Dr. Joel Saper, and the best thing to come from that visit was Oxygen. About six years into the headaches I went to San Fransisco to have a procedure done where they put an electronic nerve stimulator on the Trigeminal Ganglion nerve in the right side of my head where my headaches are. I was given a small device which sent electric signals through my chest and into my head through a wire. The idea was that the stimulation would help. It did not and I went the next fifteen years without much treatment, having bouts every day usually one to two hours each. I read on the internet some ten years ago that someone who also suffered thought they might be related to the part of the brain that controls your internal clock. The man had installed full spectrum lights in his office and believed that had some effect. I did the same and since have had my headaches become eposodic instead of chronic and also the episodes are getting further between. I have no idea if that or my age is the reason or either for that matter. I do see a patern of the episodes starting when the days are the shortest or longest. The last couple seasons I only noticed symptoms though and no pain. I have posted this for two reasons. One to give hope to anyone that suffers under the age of forty. Hopefully they are close. And secondly to let people know of the methods I have tried in dealing with the problem. I should also mention that I have tried every medicine known to man, I think, and only prednisone was usefull in stopping the bouts and for only the lenght of time I was taking it. Good luck to you all. John.
John Bartels <jdbartels@cableone.net>
Boise, ID USA

I have had the cl for 18 years and this time there real intense cant stand them. they been waking me up 3 times a night have to get up and sit or i pass screem i cant deal with this pain anymore. it is making it hard to go to work and when i get one at work omg they start to go away in about 15 min but man the time seems to crawl
Leann <ejkilde@paulbunyan.net>
Cass Lake, MN USA

started getting ch,about 5yrs ago,between 5 and 10 per year,each one lasting about 15mins.then 3 weeks ago,i got a ch,and i have had it ever since,no matter what the doc gives me,it will not go away.i am now on my way to the hospital.i hope too god that they can help...i really need some sleep,im like a zombie...its no good for my family,they are suffering,as well as me.
anthony hainsworth <hainsworthtn@aol.com>
leeds, united kingdom

I USED to be an old timer on this site. I've been gone a long time. My odyssey with CH started around 13. It crescendoed in my late 20's through my 30's, then slowed a bit as I approached 40. 3 years ago, I took a fall at work. After more tests than you can imagine, I was diagnosed with a rare spinal cord disease called Syringomyelia(SM for short) SM is basically a liquid filled tumor/cyst that forms inside the spinal cord. In my case, over time, it has split the cord from T7-L2 from the pressure. In the center of the syrinx is an arachnoid cyst. Arachnoid cysts are usually found in the brain, less commonly in the spine. The arachnoid is what caused the SM. I'd been EVERYWHERE with the CH. Inderal, Imitrex, oxygen, hypnosis, Midrin, Cafergot...you name it. I always returned to my three old standbys...heat packs, vigorous hair brushing and slugging back spring water after spring water. (Thanks to the incredible people on this site for THAT. It does work about 80% of the time) I have been a headbanger as far back as I can remember. Broken shower massage units, sinks, tubs and even toilets. My old house had holes in the bathroom walls from me. A few times, when things got truly out of control, I started playing with knives during attacks...thinking if I sliced my head in just the right spot, I'd feel better and relieve the pressure. Since the SM diagnosis, I have been on a merry go round that no one could understand unless they were riding the horses with me. Countless neurologists and neurosurgeons all saying the same thing...SM is incurable at this time. All we can hope to do is maintain you pain wise. Surgery at your level could mean too high a risk for paralysis and it's not worth it. Spinal shunts have about a 90% failure rate after 6 months. These last few years have been years filled with pain, depression, desperation and exhaustion. I very often wonder what my true quality of life is and why I am here. Then all I must do is look at my beautiful 17 y/o daughter, my new, loving husband and I can survive another day. But in a year, my daughter will be gone to college. And my poor, neglected, ever suffering husband is starting to show cracks in his armor. He lives with a junkie...Dilaudid and Klonipin and Lexapro. I sleep 12-15 hours a day on the meds they have me on just to keep the pain at a 5. And when the clusters come in on top of the SM pain...I become unreasonable and suicidal. NOT because I want to die! Just to escape this god awful pain. I sit in amazement sometimes when I realize...I am a morphine addict. I have no choice in that. If not for the morphine, I wouldn't be able to move. The SM has scalloped out my verterbras, damaged enough nerves to shut down my bowels and bladder and I need a cane 24/7. Yet with all this morphine, it doesn't even scratch the surface of a cluster. The heat packs and water are he closest I've ever come to a "cure." I'm not a religious person. I am agnostic. My faith is based in reality and humanity. I completely understand the physiological reasons for my conditions (which, according to the neuros, are all intertwined. Compromised CSF flow+spinal blockage=cluster headaches.) But that doesn't prevent me from spending many lonely, pain filled nights crying out "WHY?" in the dark of my bathroom. Hiding from my family and wondering if this is the way I want to live out the rest of my life. It chills me to the center of my core when I think of the things that go through my head during a cluster. I clutch kitchen butcher knives for security...knowing they are a "way out" if I just can't bear it for one more second. I hear myself babbling and wonder who that person is I hear in the distance. I beg, I whine, I onduct whole conversations about things I have no knowledge of. For that half an hour, I skate on the edge of insanity. And when it stops, I sit in the dark for hours, trying to keep myself awake and shaking like a leaf...waiting for the next one to hit when I doze off from pure exhaustion. Please...if anyone reads this and you are a chronic sufferer, go get a full spinal MRI. Make sure it's a CLOSED MRI with a machine Tesla rating well over a "1" rating. Have the results read by a neuroradiologist. Beg, borrow, steal or scream if you must, but get this done! Open MRI's do NOT have the resolution to detect many problems of a neurological nature. Arachnoids, cisterns, Chiari Malformation and a host of other defects can go completely undetected. And if you are lucky, you just MAY have one of a host of neuro conditions that can be addressed. If I can help just ONE person with this advice, I'd be happy. I started a SM Foundation and we have about 200 members. (As I said, it's a rare disease)And the ONE most common thread we all discuss is cluster headaches. NOT migraines, NOT headaches...clusters specifically. I just wanted to say hi to some old friends here (hey DJ...website looks GREAT) and do a little venting. In my opinion, we are among the bravest and most misunderstood people in the world. I have a disintigrating spinal cord, neurogenic bowel and bladder and nerve pain from a 8 verterbra blockage. But the pain from ALL that pales in comparison to these clusters. DEMAND a complete MRI...skull, cervical, thoracic and lumbar. It's a few hours in a tight tube (take a valium and screw the "claustrophobia" arguments) but it may be the best time you've spent so far. regards to all and PF days and nights. Water, water, water!!!
Kathi <Kathi1211@aol.com>
Morristown, NJ USA

Hello to you all,happy to have found kindred spirits. I'm a about to be 56yr old male with CH since 1983,have tried all the treatments,when mine started I was aPolice Officer in Chicago, after being treated for 4yrs there,we thought the humidity was the "trigger",so my family moved to Tucson,Arizona for a dry heat, I worked as a Police Officer there for 11yrs still suffering with the CH not as many but now more painful.I took a Disabilty Retirement after 11yrs with the Tucson P.D. after having a stroke, the stroke was due to uncontrolled hypertension, but the clusters never went away.I've had success with daily use of Lithium, Verapamil, and now Topomax seems to work well. I've taken it daily since 2003, and I'm having my first major crisis since then.It started about 11/29/05 and is still rolling. I was on a six day regimen of prednisone in december and I just started another regimen 1/27/06, and gone through 120 Darvocet in 29 days, not counting two Demerol shots somewhere in between,I am also a Disabled VietNam Veteran with some combat injuries that require a host of other meds, so I appreciate the support, thank you.
Pleas G. Ransom <PGRansom@aol.com>
Goodyear, AZ USA

Hello All, I'm Jeff Hughes frm Milton, Wisconsin, I have suffered from Cluster Headaches since the fall of 1992. As many of you , I have encountered the incapacitating pain, nausea and have nearly succumbed to taking my own life as a result of this ongoing affliction. Thankfully, Mayo Clinic (Rochester)accepted me as a patient, and on 1/26/06 surgery was initiated to introduce a Deep Brain Stimulator into my Hypothalmus. I am now communicating with you all from home. Since the implant was inserted, I have had no (0) Cluster Headaches! As you can imagine, although exhausted I am on cloud nine, and can still not beliee that I am this fortunate...I am going to hit the sack soon, but would enjoy fielding any questions or concerns that any of you may have, bacause I believe knowledge is esential to proper treatment. Believe me, here in Rock County, I experienced more medical ignorance than I thought was present in all of the 3rd world! I wish wish you all a pain free night, and look forward to speaking to you soon... Respectfully Submitted, Jeffery A. Hughes
Jeffery Hughes <zmajkl@aol.com>
Milton, Wi USA

i'm 14 and my headaches have gone from bad to worse. I have had several instances where I have passed out from the pain. My friends are very worried yet I'm worried that it might have developed into something more serious since i have a family history of brain cancer.
CLO
USA

For the past few years I could be the poster boy for CH. i became dependent on both percocet and imitrex. Used together they were 100% therapeutic for relieving the CH pain. But, the CH would return 12 hrs later w/ more intensity.....this was a costly catch-22 cycle. I went back to my Dr. with info from this website. He looked at all of the meds and for no particular reason said "let's try prednisone"...........after beginning on the Prednisone I went 2 weeks without a CH {for the first time in years). I did run the prednisone until I ran out. Headaches returned immediately while off of the prednisone. I am back on it now per my Dr. and we will see where this second phase will take..........any other experiences w/prednisone?
Bill Lange <blange@gwsinc.com>
Richmond, VA USA

I am 20 yrs old I have had Migraines since I was about 11 yrs old. I missed alot of school because of them and went to the doctor most of my childhood for them. When I met my fiance' he was up front with me in the very begining about his clusters. I always thought they were just "normal" Migraines, maybe a little more intense. Well, I was wrong. We live together now, its been really hard for me as well him. I always want to help- do anything to ease the pain- even just for a few minutes. He gets them about the same time a day. He just walks aroung the house, head in hands, sometimes crying, and begging me to make them stop. I really wish that I could. Its so hard for me to watch this, I cant imagine actually going thru this. For me, my migraines are not as intense as Clusters, but last for about 3 to 4 days...I go to sleep in pain, wake up in the middle of the night to use restroom or check on the baby and still in pain, to only wake up IN PAIN! But, for him the pain is soooo much worse but doesn't last that long at all. Maybe an hour the longest. I know he suffers, his eye swells and nose "runs", feels sick to his stomach. I am so glad that he and I found this site and get tips on how to handle, well- at least reduce the pain. Relpax really works for as well as a daily dose of Topamax. I sometimes feel as though his doctors dont really try hard enough to help him. They just keep trying new medicines...(usually the latest on the market.) I wish I could say that I feel there will be a "cure" for Clusters- but I dont see it happening... I dont believe there is enough REAL research going on for these types of headaches... Sincerely, Living with a Sufferer.
Allison <numom_053105@yahoo.com>
29644, sc USA

I have suffered with cluster headaches for 34 years, I have been free of clusters for 5 years. I got them back two weeks before Thanksgiving and have been dealing with them ever since. They are the worst I have ever eperienced with anywhere from 6 to 8 attacks a day. I am close to 70 years of age and am not dealing as well as I used to with the headaches.Any comments would be well accepted.
Ronald Schneid <schneidcapt@aol.com>
North Augusta, SC. USA

Hello, I'm the wife of a 37 yo CH sufferer who's had CH's for 11 years with no real success from numerous attempted preventive medications. I can't believe it, but right now am sitting at Mayo Clinic/St. Mary's Hospital in Minnesota while my husband is undergoing surgery to have a deep brain stimulator inserted into his hypothalamus as a last-ditch effort after his episodic headaches went chronic about six months ago. My heart goes out to all of you CH sufferers and their families; I know what your life must be like. Please send any prayers/positive thoughts you can our way for my husband to come through surgery; I am so scared, but hopeful at the same time for him to get the pain relief he needs and his life back to some normalcy. We will write again soon and let you know if this works for him. I wish all of you luck in finding the path to relief that works for you.
Kerstin Hughes <Zmajkl@aol.com>
Milton, WI USA

I am a 24 year old woman who just got married in November. I have had CH since I was 11. I have learned to deal in many different ways. Today my Husband seen his first of my DEMONS. It scared him. I was in the middle of taking a nap after I got out of school to prepare for a night at work when I woke up hysterical. He came to me panicked and asked what he could do. I had explained before that there was nothing. I was pain free for a wonderful year and a half now the terror of sleeping is back. Now I am starting to get them at work. If only a cure!!!!!!!! Thanks for listening I am just glad I am not alone anymore
Andrea <andrea_marie411@yahoo.com>
St Joseph, MO USA

hello i have just got diognosed with cluster headaches today. i am 30 years old and let me tell you these suck.i cant believe how many of the simptoms are all just like mine.what really sucks is that i have no insurance and the meds are 158.00 for 2 treatments.they gave me some samples of imitrex but failed to give me the pen part.when i asked for it they said they dont have one.does anyone know how i could take the imitrex without the pen if so could someone help me out?thank you.my e-mail is mcguire0643@yahoo.com
scott <mcguire0643@yahoo.com>
adams, ma USA

long time sufferer of clusters with some success in treating this terrible affliction. would like to converse with other sufferers. i am a 67 year old male, married with 2 children.... al
al <alstoy83@aol.com>
nj USA

Hey - Was sooooo glad to have found this web site. I have not had cluster headaches for 5 years, but now they are back. They usually wake me up in the middle of the night, but have occurred at other times. Can't think about anything else. It consumes you. I feel so drained. When I first found this site last Friday, I just cried like a baby. I was so depressed, but somehow it helped to read about others. Now I'm back on Imitrex, predisone, and topamax....my doctor is great and will try everything to help me. For this I am so thankful. And for all the others that suffer so much - I am sorry. Sheila
Sheila Henke <henke2@cox.net>
Amarillo, Tx USA

My son just started having cluster headaches a little over a week ago. He is 13 and terrified at the prospect of having to deal with them for the rest of his life. Someone mentioned that a relative had eliminated MSG (Monosodium Glutamate) from their diet to eliminate "killer headaches" and - since I was grasping at straws - we tried that. He hasn't had any MSG or any headaches for five days! I don't know if that's the magic bullet for us or if it will help any of you, but it's given us five pain-free days. Hope this helps some of you and we're hoping it is our cure.
Julie <fulksfarm@frontier.net>
Cortez, CO USA

Hi Again, This is my 3rd pst since 8/30/05, I hope Im thru the worst of this bout. I still have the constant dull headache everyday and alot of short episodes of sharp pain but that is better than the head banging. Just wandering how many have the conjestion after their bouts? Mine never seems to go away, even when the headaches do. I get so tired of feeling like a finger is stuffed way up my left nose hole all the time. I havent breathed thru it in years. I tried everthing and nothing works. CT scan says all is fine with the sinus and it just has to do with the Cluster Headaches. If anyone can help just email. Im just glad the demons gone for now, I can deal with the sinus. Thanks Gary
Gary Shawver <gandbshawver@evenlink.com>
Beavertown, Pa USA

Hi all this is my first time on this site and i feel for each and every one of you. I am 30 years old and have been suffering from CH for ten years and just in the past year have learned what they really are. I suffer usually once a year for about 8 weeks every night. I couldnt even imagine those of you with chronic clusters, when mine hit my life changes i am a single mom with three children so life is difficult regardless I take verapimil and replax or imitrex to relieve the pain. I have learned to lay still finally and that seems to work and an ice pack can usually numb the pain. This site is great, it is good to know that im not alone. Thanky -You all and good luck tonight. Kacey
Kacey Hale <whale@cogeco.ca>
Sarnia, Canada

This is crazy. I wish i was like most of you guys. Having only Eposidic Cluster Headaches. Mine are Chronic. Everyday. I've had em for like 2 years now. And looking back I remember 1 week without them. Im on Lithium Now. Amerge Works real Well for me. But i have to take it almost everyday. People don't really understand the pain. Life seems somewhat bleek. Can't do much, go anywhere or carry on much of a relationship with someone. Is there anything... ANYTHING.. New? Can i get a new brain? I cant imagine goin thru this forever. Constant, Krazy, Freakin INsain Pain all day everyday. How can there not be a cure?????
chris <Chris@dogsofdesign.com>
Torrance, CA USA

Just entered my 3rd cycle of clusters in my lifetime after enjoying a nearly 4-year remission period since the 2nd cycle ended. It is so strange how these beasts work but just like the last cycle, this cycle likes to "treat" me around 1/2pm to a bad roller-coaster ride of pain. Oh, but this newest cycle has also added a 1/2am ride...maybe it feels that I enjoy it so much I would want to go again? Almost four years ago after visiting many doctors and being misdiagnosed, out of nowhere arrives one physician who chatted with me for less than 5 minutes, told me I was a CH, prescribed me Imitrex and the rest was history. Fortunately for me I am able to take an Imitrex at the start of the beastly pain and 80% of the time the pain evaporates completely within 2-3 minutes. Though if my pills run out, I am a mad man of anxiety until I have my precious babies back, lol! Oh...lastly, looking back many years ago, I am 27 now, and I can remember when I was in 7th grade experiencing gut-wrenching headaches everyday in Literature class at exactly 1pm for a few weeks. I had to leave school (or at least attempt to get a pickup) early each day and my parents and teachers thought I was crazy! Actually so did I after awhile. Not a single doctor diagnosed me with CH way back then and it amazes me how I was able to get through each attack with no medicine or "best practices" to help alleviate the pain! Geez the strength of the young. Not anymore baby, I am an adult and I need my meds!
Chuck <cworld78@hotmail.com>
Greenville, SC USA

Hi- my name is Sylvia and I am 26 years old. I got my first cluster headache when I was 20 years old. I was working my first real job, going to school full time, and had just had a baby. At first I thought it was stress, then I thought it was sinus. I tried everything and nothing worked. I thought I was going to die and would have many sleepless nights. Finally I had to quit my job. I just couldn't take it. I remember September 11th bombings I had a headache that lasted from 4 am to 9 am and then again at 11 am until only God knows. One day the headaches just disappeared. I didn't have any again until a year and a half later. I have been to doctor after doctor and and in the process of having an eeg, mri, and mra to see what is wrong with my brain. My husband is worried and I am just worn out and hopeless.
Sylvia <SylviaDnn@netscape.net>
Houston, Tx USA

Well, well, well!! I can say with 100% assurance that the beast is back! I hadn't had an attack for over 4 years and when the first attack hit me, I kept telling myself "this can't be what I think it is!" It was! It's amazing how excrutiatingly painful these things are, especially when you hadn't had one for so long! This is the second morning I've had to deal with these things! I don't know how much longer I can deal with these things! I only hope and pray that the good lord will see to it that I don't suffer for such a long time as I did 4 or 5 years ago. (That session lasted for 3 months straight!) - hoping to find relief soon!!
Tina <txcheetah@yahoo.com>
St. Petersburg, FL USA

First time visitor to the site as I sit here with a CH at 2:26am, fifth day in a row in this cycle. Good to know that I'm not the only one sitting on the edge of my bed trying to rock this thing away. My wife doesn't understand, thinks it's stress or "in my mind". Yeah, it's in my head alright, the right side, pushing my eye out and if my head explodes, at least it will release the pressure. No drugs are working for me, so I'm very frustrated right now. Sleep is a precious commodity as I travel a lot for business. I'm off my game and going nuts. CH subsiding, going to try and sleep. Thanks for the site.
Chuck Ball <chazball@aol.com>
Granite Bay, CA USA

Hi i'm Terry i'm 31 i've been a ch for at least 14 years now, i just came off one of my longest remissions about a year and a half, and just started slugging it out with the demon about 10 days now. I'm a pretty serious weight lifter and consider myself pretty strong until the demon comes knocking. I found a pretty good trick this time i go running but its not real fun late at night in -10 below wheather and snow, I must have run 15 miles in the last 10 days my shoes and feet are warn down to knubs, this is my first time in a chat site about this and i appreicate you letting me vent, the demons are killing me. Fellow sufferer Terry!!!!!!!
Terry M. <themulawas@wowway.com>
Roseville, MI USA

Hi all, 35 year sufferer of episodic clusters, have tried a lot of different things, Imitrix has been good, prednisone is good, O2 was somewhat effective, cafergot and ercaf were all effective, verapamil, and other things not much help. Accupuncture really helped,had suffered for 6 months, 2-3 daily went to one accupuncture and stopped for 3 years, now just moved to high desert area of CA and need to find a knowledgeable doctor, anyone know any I am open if that is permitted under the rules of the web site. A Good doctor is a great ally to have. feel free to contact me if I can give any support, remember this too shall pass.
Dean <Hmartin2@Aol.Com>
Yucca Valley, Ca USA

I'm 37 and suffer from CH since 18. Unfortunlly, I've only discovered it in the last 4 years. I've already did CT, MRI, X-ray and all the other stuf only for the doctors to say that I'm 100% OK!! (and the pain continue...) Few years ago, I've startes writing down everything that had to do with the pain I felt. Than, I've entered the interet and answered some questions about "what kind of a headach you've got". And the result was cleary CH! Than I went to the doctors with the diagnostic in hands, and started to look for treatment. The only thing that REALLY reliefs totaly the pain (during the cycle) is 100% OXYGEN (10-15 l/m) for 15-20 minutos. Eyal
Eyal Seagull <eyal.seagull@gmail.com>
Sao Paulo, SP Brazil

I have been suffering from clusters for 9+ years this website and support is great.
Brent
Binghamton, NY USA

I'm only 16 years old, but my doctor has said he is pretty sure I do have cluster headaches. At first we thought it was allergies because I started getting the swollen/red eyes, and stuffy nose after a cross country meet. But the allergy tests said I was not allergic to anything. Then I told my doctor when I got them, how long they lasted and everything like that. Right now he put me on medication for a few days to see if it helps. However, I got the headach while on the medication, but on the opposite side than I normally do. My mom feels so bad for me when I get them because I am in so much pain for a while and there is nothing anyone can do. I started getting them in October of 2005 (if that is what it is) and I've gotten en at least 3-4 times each month. School has not been easy when I have them at all. My friends kind of understand what it is, but not fully. They know I look like crap but they don't know the extent to it and I don't think they ever will. It's something I don't want my friends to know about, but some do know when an attack is going to start and it has scared a few of my friends and it hurts me to see them that way. Now my doctor says he's pretty sure I have CH based on all what I have told him, but being a girl it is rare for that. But then we brought up I am colorblind as well lol. I just hope no one around my age ever gets these... they really put a damper on life.
Ashley Marshall <athleticgurl389@netscape.net>
Somerville, USA

This site is great
Emma Jenny Taylor
Milton Keynes, Bucks UK

Hi, my name is Scot. I have been suffering from ch for 18yrs. I was diagnosed when I 24yrs. i can remember my very first one like it was yesterday. I acually was having a dream that a horse was kicking me in my head and when I woke up the right side of my head felt like it was going to blow up. I am 42 now and I have not had any for almost 2 1/2 years until 01/09/2006 they came back. It is good to know that there are other people out there that know what I am going through, but I will tell you I would not wish these on my worst enemy. I wish everyone who suffer's from these horrible beast's much luck and I hope you all can find the medication that works for you. Because after 18yrs I still have not found it.
Scot Nason <Eightsamfive@aol.com>
Byron, IL USA

My husband, Kevin - was recently diagnosed with cluster headaches, and since then - our lives have been turned upside down. Is there hope? He's tried imitrez, maxaalt, and relpin??, spelling may be off - he continues to get them and even has a sore spor on the top of his head and he knows that the beast is just sitting there waiting to pounce. Help!
kevin jenkins <jenkinsrn_2000@yahoo.com>
camanche, ia USA

CH'S for 38 years. not many drugs that I haven't tried. So glad to have found this site! I have been taking Trazodone for about 20 years (75 to 150 mg at nite) and it has been remarkably effective at keeping th beast at bay. I am now in one of the worst episodes of my life (It has been nearly 5 years of ALMOST PF). Imitrex injectable, as much as possible (2x/24hrs)...wish I could use it 6-8x/day! Midrin and Percodan. Midrin and Percocet have the liver killing ingredient of acetiminophen (Tylenol), so I try to stay away from it, but it depends on the doctor and what he thinks I should have, not what I KNOW what is best or works for me. Does anyone know of a "Midrin type drug that doesn't have acetominiphen in it? Does anyone know a doctor with CH'S? It would certainly help to have someone with a presciption writing license that knows what we are going through and has researched it! O2 helps also and there is a product called "vitamin O" (R Garden sells it) that has stopped the beast in it's tracks. in the past. It amazed me how fast it stopped the episodes . Unfortunately it does not always work, or I wouldn't be writing this. Good luck to all.
ken <ainofool@aol.com>
oh USA

Hello, My name is Allen James and Im 30 years old and I reside in cornwall, united kingdom. Only last week i was diagnosed with SUNCT, that Im sure your all familiar with!! As a fairly young man, I was mortified to learn that there is little that can be done or offered in way of pain relief for this condition and Im a liitle in the dark as to how Im supposed to cope. Im experiencing up to 400 attacks a day at present, and they last from 30 seconds up to ten minutes per episode. If anyone knows a good remedy that doesnt involve banging heads against walls etc... please let me know by way of my email addresss. bye for now Allen James
Allen James <allenjames@hotmail.co.uk>
Cornwall, UK

we found a CURE for my husband!!!!!!!!!!!!!!! not to bore you with the details but to share some facts. My husband has suffered for 12yrs, at first they started with one a night at exactly 1 oclock on the dot.They progressed to 5 or more a day, we had nurologist from Vancouver to Boston consulting they had agreeded that his was the worst case they had ever seen. He has taken every cocktail of drugs they could think of including having an oxegin tank by our bed, he was on high doses of prednizon and sansert till the drugs made his kidneys fail. The doctors said that the only thing that they new of to take him out of his pain was to put him on morifine but he would become addicted or there was a new proceedure being done in Vancouver Canada that deadens the nervers to the right side of his brain he would still have the headachs but he would not feel them, his nose would still run and his eye would droop but there would be no pain. We chose the operation it was horrible but it stopped the pain, for 3yrs then the nervers grew back and we were back to square one. We moved to Phoenix and my husband started to see a new doctor that send him to a nose specialist, She was from Montreal Canada and had done her theseis on Cluster Headaches. She explained that his Sinus cavities we completely blocked and put him on a combination of antibiotics and Flonase and Mucinex. He can not miss a day of the flonase or they will start back up. Ten years before I asked the doctors if it could be caused by an infection of any kind and they all said definetly not! I got all kinds of reasons why not and they would not try antibiotics. My husband was ready to try anything!!!! We have gone the months with out sleep, the banging of his head against the wall, It came to the point that my son and me stared taking what we called suicide watch because my husband a very strong man was at his breaking point. He had asked me a couple of times to help him end it. I am sharing this with you in hopes that it may help at least one of you. Give it a try it can not hurt there are no side effects to Flonase. It has become our wonder drug!!!! p.s. He resently had an CT scan and they found that his sinus cavities were twice the size of any humans they had ever seen.
connie west <westconnie@gmail.com>
phoenix, az USA

Hey. I have been having Cluster Headaches since around 1989ish. In 1992ish was the first time a doctor diagnosed me and gave me a name for the pain. He seemed surprised that no one had told me about Cluster headaches. I have been given several pain killers (flexeril, perkisets) and migrain type meds (caffergot type stuff). My last Doctor I saw 3 to 4 years ago tried prednizone theropy first. I did not do well with that at all. It stopped the cycle but when I stopped taking the prednizone (deminishing dose until almost none) the cycle started back harder and stronger 9's on the kip scale. when I told him please just cut off my head he gave me imitrex nasel injections instead. That took the edge off but my heart did not like it to much, kept felling like it was stopping. The Doc thought it was best to stop that approach. Next came Oxygen theropy. I had some success with that along with Ice packs on my head and rocking. the headaches lasted about 15-20 minutes. Here we are today, 16 or so years later. Looking at the site the other day I learned that it is caused by a nerve (ouch website). This pleases me, I always thought it was a vein or artery that was going to cause me to hemerage in my brain and my wife would find me dead some day. These days no meds, no oxygen, no doctors. It never seemed as though it was worth the money or false hope. I have no doubt that the doctors I was seeing truly had compasion and a strong desire to help but just did not seem to have enough progress to continue. So here is what has helped me over the years the best. Each cycle is a little different so each technic may work along or with one of the others or several at the same time! Hot shower, cold shower, cold air outside or the freezer inside (i usually have my cycles in the fall),running in place, pacing, rocking on hands and knees (use with almost all off my technics), Ice packs to the head, neck or eye. This cycle frozen corn in a dish towel to the head in wherever it seems to feel the best at a pressure almost equal to squeezing a frozen kernal of corn through a pin whole the size of a human hair. Rocking, of course, and much physical movement (kicking legs like I am swimming, on my hands and knees or shakin my shoulders and butt like a I am doing a crazy ab exersize). Tonight I remembered that someone at one time said pepermint scent is sometimes used as headache theropy. well I hit pay dirt. Frozen korn in a dish towel, hands and knees, slow rock and eclipse spearmint gum. 20 Minutes and what strated as a 7 to 8 on the kip scale stedily dropped down to 0 pain. So far this cycle has been 1 and a half weeks with the last few days 2 clusters a night about 30 minutes to an hour after I fall asleep. Last night I was soaking wet with sweat by the time my first cluster of the night was over. I barely had strength left to handle the second. Today I am very sore in my shoulders and legs. Let us hope the gum keeps working. I eat ice cream after I survive cause' well Ice Cream makes anything better! My wife of 13 years is awesome. She hates to see me in pain but she deals with it very well. My daughter who is 14 is sometimes kind of funny about it. Now that she is a teenager and never sleeps, she discovered my condition a couple of years ago and kinda freaked out to my wife wanting to know what was going on with her Dad. Now that she knows it bothers her but she always asks if she can help when she sees me in pain even though she knows there is nothing she can do. They go back to bed at my request if they wake up. It is best for all to be alone during an attack. I have skipped a year here and there but mostly I get them every fall around daylight savings to Christmas. I belive in balance, when there is good ther is bad, balance. My life is awsome since I met my wife, If Cluster headaches are the cost of my happyiness I will pay forever, balance is awsome, stupid bad for a little while brings incredible happy on the flip side. This is my tail,and technics, hopefully someone will read this and find some form of relief with one of my technics. I really like the gum and frozen Corn, if every cluster can be like tonight life will be even better. Maybe next post or chat I can be on one of my computers with the cool red sqiggilies!!
Ben Smith <bsmithet@stx.rr.com>
New Orleans, LA USA

Hello and welcome. So sorry you had to find us, but I'm glad you did. Come on over to the Message Boards, there are many of us there to help you. :-) pain free wishes, nani
nani <nani36@hotmail.com>
Los Lunas, NM USA

25 years -chronic clusters, cyber knife
thomas brancyk <brancyk@sbcglobal.net>
san jose, ca USA

32 male here in the level 2-3 "KIP" scale of pain right now 1st attacks when i was a teenager - i felt my hair "hurting" or scalp, never did anything about it till about 2 years ago when the pain was 8-9 on the KIP - Doc said it was cluster headaches..never heard of it before- i wish i never had now..Its a matter of time before i'll launch in to the 6-8 level, again.. Make it stop! "Dear god, make me a bird so i can fly far far away" - Jenny - Forrest Gump
Bernard <bagonzol@hotmail.com>
Germantown, md USA

I am a cyclic cluster headache sufferer. I am in a every two year cycle that lasts anywhere from 2-3 months. I know I have lost alot of my pain tolerance from back in the years when I was chronic. If there is any advice, anyone could pass on to me I would greatly appreciate it. My cycle will be starting in March of this year 2006. I am so glad my supporter Michelle found this site for us !! Thank you.
Ren <dad031766@yahoo.com>
Avilla, In USA

Hi, I am a 47yo male and have had ch's since 1982. Mine usually last 6 weeks, hit primarily at nite, are usually only once a year sometimes twice,,,, and not necessarily at the change of seasons. Mine start out very very mild and increase in numbers, pain level and duration until such point I feel as though I cannot go on,,,, then Poooof,, they are all of a sudden gone. I have tried nearly everything that I can think of and that this site calls out and every episode is different,,, what worked last time may or may not work this time. Axert is a new pain drud that has produced no obvious sided effect and works every single time. The drawback is that they are 20 dollars a pill. They are for migraine sufferers and therefore the idiots at the insurance company will only let you use your card for a very limited amount. I am currently in about week 3 (of 6) right now. I can use just ice and oxygen up until the 3rd week and then they only help not stop a ch attack. Thanks for hearing me out. It is nice to see that I am not the only one that deals with this disruptive malady. Larry
Larry Taylor <dinazyo@qwest.net>
Gilbert, AZ USA

I am a 33 year old migraine/CH sufferer. I've had headaches since I was 10 years old; menstrual migraines since I was a teenager; and now CH's for about a year. I have severe pain in my left eye, thru my cheekbone, to my nose, down to my teeth, down thru my jaw, into my ear, to the back of my head, down my neck and into my shoulder. My eye waters, my nose runs, and the left side of face swells and my skin hurts. The pain flucuates on and off all day and night. Oxygen doesn't work; I'm allergic to Lamictal and Indocin; Relpax helps with regular migraines, but is bad if used too much. How do you all keep going? Do you work? Are you on disability? I'm single, no children - I couldn't pass this onto them - but I have a wonderful boyfriend. I am a bookkeeper and it's getting harder to perform my job under this much pain. My Neuro is at Univ of Maryland, and tries to prescribe meds to help, but NOTHING works. My great-grandmother, my grandfather and my mom all suffered from migraines. I've been on so many medications for migraines - and NOTHING works. Pain-killers don't even work! I feel so lost. I just started Atenolol (not working.) Lately, I've been queezy and after excrutiating attacks, I get dizzy spells. Thanks for listening, and good luck to you all.
Suzanne <skkratt@netzero.com>
Annapolis, MD USA

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