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Below are the guestbook entries from April 2001. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main Guestbook I'm 3 weeks into my cycle. I don't know how long there going to last this time. They have always stopped in the past,I'm up to 5 a day and my head feels like its going to explode.Ken Langley, USA Monday, April 30, 2001 at 19:32:27 (EDT)
I am so relieved to find this website. I am 25 years old, and my CHs started again a week ago. I started having CHs at 14 and went into remission at 18. At 21, they started again. At that time, I was working for a Chiropractor, who diagnosed me as a CH sufferer, and I started to read about these particular kind of headaches, and everything that I read was about me. Then at 22, I went into remission again, until a week ago. This round, though, is on the left side, where before, it was always on the right side. I am glad to know that there are people who know what its like to be in so much pain, and I feel for those who get CHs all the time. Thankfully, I only get 1 a day, and the worst episode was when I got 3 in one day, and it was so bad I was rubbing Bengay around my eye to numb it. I always get shadows, so I know to be prepared. Unfortunatly, my insurance does not cover medication, so I am left to deal with the Beast until my next remission...
I am a voluntary research client at the headache unit national hospital for neurology queens square lond wci uk where they have ben doing extensive research including petscan etc on sufferers under the ditrection of profesor goadsby and until last year a german called dr may.As a 30 yeasr long vivtim I am sure they are now the greatest experts on this syndrome.I have ben taking verapamil now for 18 months and unles i get pissed or freak out this stuff doers prevent the excesive acute headcahes and stops the discharge of mucous type fluid from eyes, nose and mouth. It is not a cure as they belive there is some form of malfunction of the hypothalmus which shows abnormal characteristics (activity) even when the condition is not active. they are correlating all kind of background data in an attempt to find commonality as they toldme even some Normal peop the current registrar in charge of the unit is a dr matharu.Most pain killers take about 1 hr 15 mins to get to the head so are mainly useless but the injectable form of Immigram does work if taken at the outset but the side effects are not nice.
to all of you I say .. the pain is probably an attempt at a solution,not the primary problem so therefore love the pain for allowing nothing but the pain to hurt.
Epsiodic CH for four years, converted to chronic form in 1990. Never stopped since. I have been most fortunate in being supported by an excellent GMP throughout this time. Keep up the good work with this super site.
pain-free?!? what does that mean?!? i wish i knew...
:O(
jerry
Hi, up until about 3 days ago I had never heard of a cluster headache. I DO BELIEVE I AM A SUFFERER!!! Why does no one else believe me? Five years ago was my first attack (I think) it lasted about 3 days, repeat about 3 years ago. Thirty-two days ago started my last attack....EVERY NIGHT for 3-4 hours. If I had a gun I would be dead by now! I have NEVER felt this kind of pain, generally I have never been sick, headaches are non-exsitant, as is pain. At least now I know I am not alone! That is not a good thing.....I just want to die. Hopefully sounding off will bring some relief (HA HA), but I will take some of the advice here. The pain is so unbearable ( I have a new respect for childbirth) I really do feel like killing myself. Now I think I may be suffering from sleep deprivation, I almost fell asleep on the freeway. I know I know you've heard it all before, but bitching out loud does seem to help, at least mentally. Good luck to all!
Hi,
I'm glad to find a site like this to share our CH woes. I am a 35 year old woman who has suffered from clusters bi-annually since I was 16. My heart goes out to all of you each time I read the familiar stories of rushing to emergency rooms only to spend hours explaining your symptoms to a new doctor (while they treated you like a drug-seeking addict) and being forever told by new doctors that you have migraines even after you knew better. My best CH breakthroughs have occurred in the last 4 years, a great GP finally started me on Prednisone (60mg/day decreasing in the second week)which seems to knock my cycle out in 3 days and sometimes even causes me to "skip" my next seasonal cycle. My headaches are pretty classic clusters, they occur twice a year (generaly Fall and Spring) for a 3-4 week period, They have always affected the left side of my head- I get the swollen, teary eye and stuffed and drippy left nostril as well as the feeling of an icepick being stuffed into my forehead and sometimes into my upper teeth as well. My headaches are a little atypical though- they lasted 4-6 hours straight when I was younger and unfortunatly have increased to 8-12 hours in recent years. After many years of blood pressure and migraine medications I still found that only Vicodin and Demoral injections helped at all until I tried Prednisone- what a Godsend! Thanks to the help of "Pred" things are improving for me, but I have many questions about CHs and pregnancy for the near future. I am glad to share my experience on Long-duration CH's and I would love to hear from others!
Thanks for "listening!"
Winter Renwick
winterp@hotmail.com
I never had a cluster headache until I went to a Mexican restaurant and had to use the restroom. The smell of that room gave me such a headache that I haven't been able to use a restroom since. NOW, the only way that I can relieve myself is to go outside behind a bush and do my business. It's very embarrassing and I have been attacked by dogs and I even been biten by a cat as I was defecating. What am I to do? Am I doomed to a cold winter night or a rainy morning when I have to relieve myself? I need some dignity in my life and I know that after all the terrible experiences I been through that I need therapy. Please, if anyone knows anything I can do to help myself during this difficult period, then I will be forever gratful. By the way, I don't even go down the same street that a Mexican restaurant in on. I did learn that lesson, unless I plug my nose up with toilet tissue.
Hi everyone! I would like to start by saying that I am writing just to put myself out there and let everyone know that I am interested in obtaining as much information as possible about cluster headaches; including, how best to deal with someone who suffers from the condition. My boyfriend has recently experienced a 3 going on 4 month run of excruciating pain from clusters and has never been through this kind of intensity and duration of cluster headaches before. We've only been dating for 5 months so this has been an immediate learning experience for me. He says he's going through a time now when he wants to be left alone to deal with this the only way he can, and it's killing me to be so helpless. Thus, I want to, like I said, put myself out there as an advocate, a person who can disseminate information, anything to help because the need for social support for this condition is so critical. My boyfriend needs to know that he can be cared about and supported. If anybody has any information they can offer or maybe just a friendly hello, i'd love to hear from you. It would help me and us so much. He's not the only one feeling lost right now. Please email me. I am so grateful for this website and access to the insight that I need to get myself and him through this. Thank you very much!
I've had cluster's since I was 26, at first I thought I had some kind of brain tumor like my grandfather died from. The pain described in the stories displayed in the opening of your web-site really hit home with me. I would not wish these headaches on my worst enemy. Thank you for this website, at least now I have a support group. Please contact me by E-Mail anytime. Russ
First I should tell you that I do not suffer cluster headaches, but I do support my friend, Deb, in every way that I can. I have watched over the last couple of months the pain of what she goes through and have seen how hard it is just to do day-to-day things. I guess I just wanted to say "HI!" and that I am glad Deb has a place to come to where she can talk to people who understand what she is going through.
GRACE, your E-mail is not correct, please repost to get answers!
I am a 35 year old woman who is in the middle of a cluster period. I've had them since college with a break of several years in between. Verapamil worked for the last cluster, but nothing's working too well yet. I'm currently on Verapamil, Lithium, and Indomethicin. The indomethicin is actually for a different (yet similar) headache called Chronic Paroxysmal Hemicrania (CPH). It's more rare than clusters, but most sufferers of it are women.I'm actually hoping I have CPH (not clusters) because the indomethicin is supposedly THE preventitive (100% effective). I'm about to increase my dose of it today because I haven't had a sleeptime cluster in a week, but I've had 2 during the day this week. This tells me the indomethicin (only taken at bedtime) is only taking care of my sleeptime. Anyway, I feel like I am poisoning my body with all of these drugs, and pray that they will not make me very ill or shorten my life. I have a 7 month old baby, and I need to live a long time for him!!! If anyone has experience with CPH, or any other moms out there with clusters, I'd love to hear from you!
I am 15 years old and I have only recently started getting cluster headaches myself but my mother had them all the time when I was young, until she died last year. The pain she suffered I never understood until now... I just hate myself for getting into this mess. You will all know: when a head ache comes it feels like the end of the world...you just wish someone would come along and kill you so you don't have to suffer anymore.
I'm a member of the U.S. Air Force, assigned to a small detachment on a Korean Air Force Base in Taegu, Korea. I have been suffering from cluster headaches for 13 years. I recently began another bout and spent Friday the 13th (April 13), my 34th birthday in the emergency room at a U.S. Army base. I have returned to the same ER a total of four times (yesterday, 24 Apr) being the most recent. Four trips and four different doctors. It's frustrating having to explain my symptoms each time I go to the ER. I have had good treatment from military doctors and bad treatment from them. The only GOOD thing I have going, is the treatment is free. I have read some of the postings and sympathize with those worried about paying for treatment. My complaints about military doctors seam small when I read about the high cost of this treatment. The best "psychological treatment" I have found, is this site. I feel like this bout is winding down. I can't wait to relocate from my recliner to my bed. Meanwhile, I'll sleep upright (attempt to sleep) with my Imitrex near by.
I had these Clusters for 15 years. Its nice to read about others with the same problems and some remedies new to me. I wish I was the only one that had them.
I haven't thought of cluster's in a long time - it has been 13 years since I had one (quick where is the wood, I need to knock!) I found your web-site and found it very informative and very interesting. Where was this information years ago! I started having clusters at 18. Suffered until I was 32 and have not had one since. During that period, I never had gone more than 9 months without one. One of the weirdest things during this period was my absolute intolerance of alcohol, which I otherwise when not clustering enjoy quite a lot. My doctor thought I was nuts!
I had a ruptured ectopic pregnancy a few years ago and my husband would ask me how bad the pain was and I was quick to reply - still not as bad as a headache!
So I guess my message is to anyone out there who is suffering - there is hope. I have been 13 years pain and probably more important DRUG free.
I feel like I just hit the JACKPOT on the net by finding this site. I am 32 years old and have been getting these since I was 15. This Demon (PERFECT WORD) sneaks up on me every year and a half or so. (Have had a short bout at a 6 month interval here and there) Lasts from 2 weeks to 2 months. Total crapshoot there. Get them at night about 95% of the time, and most of those are after I have fallen asleep. Needless to say, I would rather awaken from a nightmare where I am in a fiery inferno of a rocket and know I am about to be killed while crashing into hell....cold sweats and all. Now these nightly demons range in duration from 30 mins to 3 hours. The crescendo of pain also ranges from 'BRING IT ON and KO in 2 rounds' all the way to a slow 15 round bout with a KO in the last seconds. SOOO ANNOYING!!!!! Those are the badboys that get me pacing the house in the dark, looking in the mirror at a monstrous face, and literally SQUEEZING the jugular vein in my neck to stop circulation even for a millisecond of relief. Depending on what kind of demon I have determines whether or not I will have the migraine hangover the next day. The short/extreme ones seem to provide me with a better 'next day' for some crazy reason. Of course they have been far and in between this time around. Doctors have tried me on Inderal, Imitrex, and Zomig in the past. Nothing has worked. Have just dealt with the pain and prayed that they end....and they have. Well, I needed to see a doc again this time around...not sure if they get worse with age or what, but SOMEBODY SHOOT ME! (kidding there...they just royally S#$K)!! I am going to start Verapamil 240's today and may also be getting an O2 tank. Things that have worked for me are just pacing, looking into the bright light for a moment here and there, and thanx to this board soaking in a HOT shower during the worst part. Tomorrow is our 9th wedding anniversary and we are too paranoid to go out for a nice dinner with the kids. That's how bad these suckers can get to ya'. I was giving the youngster a bath last night and had to get into turbo mode because I felt one coming on. Poor kiddo loves his baths. Well...I could ramble on forever about this dealio, but will leave it there. For those of you that are MAGNITUDES past me in the pain/duration/frequency....WHEWWWWWWWW! Hang in there and please only use semi hard objects when whacking the head. (I used the heel of my hand last night...helped for a moment here and there)
Thanx,
JohnnyBGood
I am so glad to finally have found some people who understand.
Reading some of your messages brought tears to my eyes. Glad
you are here.
My husband has been suffering on and off from these headaches for
a few years now, he's 28. This last bout has been going on for
about a week now, I hope it ends soon. I'm glad to have found
this site, as it seems to be a valuble source of support and
information. I wish I could take his (and your) pain away.
It's seems that when my headaches go, I forget all about this site.
I missed it. This is my first post
I just started getting cluster headaches a week ago.From the way it sounds,i'll be in hell for a while.It comes every morning around eight.The only way i can get a little relief is to tie a stocking tight around my head.One time i tied it so tight my head got numb.
I am 25 years old and have been suffering with headaches for several years. I have not been diagnosed with CH, but my symptoms sound very familiar. I am very frustrated with my doctors (who I believe think I am crazy) with the various drugs they have prescribed. I have been placed on muscle relaxers, anti-depressants and the latest is Midrin. I am very relieved to find this site and now I will try to seek a doctor who can treat me accordingly
I am 59 year old male , have had clusters since I was a teen they last between thre weeks and three months and go away from 2 to 5 years , have tried Caffergot, Sansert , Imitrex and Oxygen, oxygen works the best for me but I cant carry it around all day. I am currently in my ninth week of two to three attacks a day, hoipe it will end soon Thanks
I was so pleased to find this sight and found the information really helpful. I have just finished a cluster which has lasted 8 weeks, you really can begin to feel very alone and as if no one else understands the pain your are going through. The comments and messages on this site have helped to give me a little hope and comforted me. Thank You!
I want to say THANK YOU first of all. This site is the first time I have ever had anyone to talk to about my pain. If it was not for the discovery channel I do not think I would have ever know about what my pain was. Then I leave and my wife, the wonderful person she is, found you. Every Feb. into March I get a pain in my left temple that is so bad I have put my head through plaster walls. Dr.s give me a shot in the ER and then let me sleep it off. Now I have somewhere to turn. Because of your links I have found a Dr. that may help. THANK YOU...More then you can know THANK YOU.
Oh,I just came back from battle of fighting for my cluster headache this morning
(actually it started from 2:30 am to 4 something last night ... )totally exhausted. I know my CH is resting
right now and it will come back tonight.... well, wish me luck !!!
Cluster Sufferer
My dearest friend is living in another country due to work, for a few years. He started suffering from CH's in December 2000. I have seen this wonderful, kind and loving man change and suffer so much these past few months--and that's only thru e-mails! He is in such constant pain and like so many of you, has missed work and more importantly, missing out on living. I've tried to find different web sites that offer help for him, and I am so happy to have found this one. I am a migraine sufferer as well as a headache sufferer for over 25 years, but I had no idea what these CH's were like until I started reading your stories. My heart goes out to all of you, and I thank you for sharing your comments so that others who are close to those sufferers can have a better understanding. I have sent my friend this link to your site and I hope he has the strength sometime to sit and read thru and see that he isn't alone and that perhaps he can get some help from all of you. Thank you......
Hi,I've just found this site and already it gives me a bit of comfort knowing I'm not alone.I have suffered since the last 5 years and lost my job through this, and reading some of the entries on the site I feel they could of been written by me.I am certainly going to be a regular visitor from now on.
Hi,I've just found this site and already it gives me a bit of comfort knowing I'm not alone.I have suffered since the last 5 years and lost my job through this, and reading some of the entries on the site I feel they could of been written by me.I am certainly going to be a regular visitor from now on.
i am a cluster headache sufferer for nearly 13 years. Unfortunately
i realize that it is different type of migrane recently.
It is great to share this with people who really understands.
Hello,
Cluster headaches have really changed my life. I have been getting cluster headaches since I was 15. I am now 37. Every year from april-july. I have tried all the treatments from inderal...methesergide...calan...pamelor...etc. Nothing has ever stopped my headaches and every spring I prepare. The worst part is that I am a registered nurse. I know what is available to stop pain but Doctor's arent willing to give us narcotics for fear of addiction. One year in my attact, I couldnt take the pain anymore. I decided to help myself to narcotics at work. As you all know, during an attact you will do anything to relieve the pain. I soon got caught, obtained 3 misdomeanor charges, many fee's and now am in a program for health care professions who they feel are addicts. In order for me to keep my nursing license this program is a must. I often wonder if I had to do it all over again would I have taken the medications. I always come up with the answer---yes. Anything to get rid of the pain. I know you understand what I am saying because only someone who gets cluster headaches would. It is now april again and I am waiting for them to return, as they do every year. Thank you for letting me share how clusters take over your life year after year.........Stepanie
Hi Folks, It seems we all dance with the same demon here. I became a chronic sufferer over 28 years ago. In those intervening years my life has been ruled by these headaches, but I know I speak to people who know exactly what I mean.
My twenties were probably the worst years, I was a young husband with a family of two children. Every thing was going fine until the demon asked me to dance. My wife was scared to death at first, she was extremely supportive and did all she could, but after 4 years we decided to part, best for her and the kids, or so the feeling was at the time. I decided to "fight" this thing the best I could and not let it be forced on my mate.
My thirties were more of the same, except the intensity of the pain grew exponentially. The pain grew to the point of contemplated suicide, but then when most of of talk of that solution, people think we have psychological problems.
My forties, again, more of the same. Except now I know how I have to live, deal with the pain and live as best I can with what I have. People ask why I would chose to remain a bachelor for over 24 years, like I have a choice. Why would I want to inflict my suffering on others?
I've gone to dozens of doctors over the years, tried about everything available and best of all, spent almost every cent I have trying the next prescibed "cure". I now fully appreciate why they say the doctors "practice" medcine, because mine didn't seem to have a clue on what was going on with my problem. CAT scans, MIR scans, sinus infections, allergies, you name it they'd diagnosed the problem, at least in their own minds.
The only doctor I had that was truly honest with me was when I was in the Navy. He told me that cluster headaches are a curse, nothing truly works and, most depressingly, "You just have to learn to live with it, there's nothing I can do for you."
All I can say is that , wow, what a live! I wouldn't wish this on my worst enemy, if I have one. But then living alone, staying home almost all the time, and waiting on the demon to visit me again doesn't leave a lot of time to make friends, much less enemies.
One of the hardest things about suffering through a series of clusters is that people who don't see me going through them chalk it up to a "headache." I've had co-workers and friends reprimand me for not being at work or cancelling a outing because I had a "headache." I developed clusters when I was 15. My family physician tried Caffergot, Midrin, and Fiornal. What a joke! M&Ms worked as well as relieving my pain as they did! I saw neurologists and had several CAT scans. When nothing appeared on the scans, my mother believed that I had come up with this really creative way to get out of school and doing chores. The doctors chalked it up to stress and told me to call down. Gee, thanks.
Shortly after I married my husband and moved to a new area, I had a spell of CHs. I went to my new doctor, described my symptoms and told him to give me a prescription for Midrin, like I had always taken. He wanted to experiment a little though. He tried 2 other medications (I don't remember what) that had the M&M effectiveness. We tried hot compresses on my shoulder and ice on my temple. That combination helped a little. When he threw Imitrex into the routine, I really starting feeling relief. Pain time went from 2-3 hours to about 1 hour, and I experienced them mostly in early morning and late evening. Episodes also only lasted about 5-8 days instead of 14.
As I am getting older (I'm almost 31), I've noticed that episodes are becoming further and further apart. Although I'm in the middle of a series of CHs now, I haven't had any since my daughter was born 2 1/2 years ago. So for those of you who are dealing with this while you are in high school and college, there is hope. My doctor told me that I might "grow out of them." I hope that you do to!
There are no tougher people on earth than Cluster sufferers. My wife, Lois, migrated from episodic to chronic clusters in the Fall of 1998, it has been hideous. She has seemingly tried everything that has helped in other cases but to no avail. She went through a rhizotemy 2 years ago and then a nerve sectioning craniotomy a couple of months ago but they have not helped either. There is no tougher woman alive. She gets 6 or 7 attacks a day. The toll from the trauma and the medication and the sedentary life is awful. I was on a leave of absence from work for a while but she felt so guilty that I did go back to work and moved our family to that I was only 5 minutes away. Drs. in ERs just do not know what this is and are pretty obnoxious at times, the closest I came to stangling anyone was an arrogant ER doc who thought he knew everyting. I really do not know what else to share, there is so much, but, I obviously do not need to get into the details of the pain cycles, you all know it. I wish I could help. We have thought that there may be a hormonal connection in Lois' case but so far the tests have not shown anything like that. Any ladies out there who have had information that would connect the 2 together? Please let me know. I will be back. Steve.
HI,, I thought I was a real (happy-pretty-healthy ) almost middle aged women untill the big CH hit my head over a few months ago for the first time in my life. Took 2 trips to the ER and 2 trips to my doctor( for me to figure out what it was)!!!. The last ER trip comfirmed it,,or atleast they agree with me now and tell me to research as much about it as I can, and believe me,,with the pain that I've had I will. Im not here to talk about the pain or hurt,,just here to let everyone know that I too am a CH-er now (and dont want to be). I think that CH.com is going to be my lifesaver for sure!!!!
Hi, My name is Geoff and live in beautiful Edinburgh, although for the past eightweeks since this present cluster started it has not seems so wonderful. I have suffered these types of headaches all my life, although only realised that they were cluster headaches about ten years ago. I use imigran injections(doctor not too happy to prescribe the quantity required) oxygen, and fizzy aspirin. Of course you have heared all this before. I am feeling pretty depressed at present, for this cluster should be well over by now,I have things to do, and can't get on with the rest of my life until i can feel safe for another year or two. The previous cluster started in 1997 so i have had years of freedom, even to the point of believing it was all over for good. Foolish me!
My hobby is cycling, I want to continue my dream of cycling around the USA, so far I have completed the bottom bit, and left hand side. But I am stuck here in Edinburgh close to my oxygen cylinder in a constant state of anxiety. Good to know there are fellow sufferers out there, but I have never met another sole in my own country who suffers this way. I am pretty fed up of trying to convince people that it is not due to extraneous causes, but some peculiar biological clock at work. Maybe it is all to do with daylength, but the daffodils are out in Edinburgh and it's about time the headaches went away.
Thanks for listening.
Geoff
Hey ya'll, I'm a 37 year old female who has been suffering from headaches for many years. I don't even remember when they started, it'd been that long. In 1997 they began to worsen, and all I knew to take was Excederine for Migraines. It did seem to help then, if I took it IMMEDIATELY upon feeling the headache come on. if I waited even a half an hour, it was too late too abort it, and my only relief was slight. They lasted for days at a time.
I lived in a nosiry section of town and decided to move way out into the country to exist among peacefulness, hoping that would help. That was in 1999. It is certainly peaceful out here, only mooing cows occasionally. The headaches seemed to have vanished into thin air, and I was so relieved. Then, about 6 months after moving, they came back, more intense. I was eating Excederine like candy, and it bothered me. I thought that perhaps taking that much Excederine wasn't good for my liver, but I didn't know just how bad it could be.
They came and went and had me in darkened rooms and my family tip-toeing around the house until last June or July. Then I got one that just wouldn't go away. It would be behind my left eye, in an attempt at relief, I would press my fingers and knuckles into the eye socket, just above the eye, and press as hard as I could, until my knuckle, finger or whatever was to tired to continue, to no avail.
In Augus, I went to my family physician, and he prescribed the "watered down" medication, the weak stuff. It wouldn't even touch what I was feeling. So I went back and he gave me something else, still not helping. So I went back on the Excederine. It sometimes took the edge off, other times it didn't do a dang thing.
In November and December they worsened, and I returned to my family doctor and told him I was thinking seriously of putting my head through windows for relief. He prescribed Stadol. The inhaled Stadol. I went immediately to the pharmacy and got it and when I got back in my truck in the parking lot, I took the first dose. About 15 minutes later, I was hardly feeling any pain. It was a happy time for me. But when it ran out, he was reluctant to refill it, but did a second time. And then referred me to a neurologist, who first diagnosed me with migraines, then four weeks later, changed it to cluster headaches. She has me on Midrin, Amytriptaline, Naprosyn, and Midrin, as well as Zoloft. Yes, 5 of them. And sometimes even all of those don't help.
The most relief I have gotten yet is with the Stadol inhaler, but of course some people abused it before i was prescribed it and so the doctors are reluctant to give me a refill, thinking I'll become addicted. I tried to tell them all that I would rather NOT have to take ANY drugs, but since I'm a woman, they either don't believe me, or they think I'm exagerating the pain. I asked one of them if they ever had a headache like this and I got no answer, which answered my question.
I should become a docotr of neurology, because I understand this pain.
God bless you all
I'm 21, and I'm in my third cycle of these things. Migratane caplets seem to help because they have a sedative. My cluster headaches have always been on the left, and my left eye seems to be permanently droopy. Nobody understands the pain. My teachers and my boss say things like, "Oh, those migraines," or "You've got a sinus headache." No, no, no! They just don't get it. I'd gladly take a good old migraine right now--that would be nothing compared to the feeling of a cluster. Sometimes I feel like my head is going to explode through my ear. And in between headaches I spend my time dreading the next one. It seems like by the time I get used to having them they start to fade out. I just wish they'd leave forever because not only am I having trouble dealing with them, but my boyfriend and my parents are going crazy watching me suffer.
I am a suffer of the dreadful migraines. I can't cope well at times
and most of the time I wonder when will it end. It's not enough to have
this horrible pain running through your head to make the day even worser.
At times I don't even want to get up because I know what I have to look
forward to. But by the grace of God, I get up each day, and thank the Lord
for the day he has given me. Headaches and all. There is a reason why I
have these headaches and no one knows but the lord. Pressure in my temple's
are unbareable at time's. Sometimes I feel like ending it myself, But with
the grace of God I go on. I can massage my temples at no relief and the
medecines that my doctor has me on doesn't seem to help. I take 2 different
pills at night 4 tables all together. 1 in the mornings and also a prescritption
for, yes, that time of month. This is not counting the 2 types of med's I take
through out the day and then the Imitrex if it gets really bad. There are times when
nothing help's and I find my self going to get a shot of more drugs. And then sometimes
this don't even stop it. So yall are not alone and I know how you feel, I have hit my
head against the wall, but mostly I am found on med's under the cover with earplugs
and in darkness. Which is hard to do when you have a husband to take care of and 5 children.
I just wanted to share my view's, but all please remeber if you are saved, then one day
we will never feel this pain again or be loaded up and med's. God bless you all and my
prayers are with you.
Please keep trying to find a cure for this curse
G'day Peeps
Just a few words of my current situation in relation to coming off a long term medication that was effective at preventing cluster headaches occurring.
I am a 42 y/o male, healthy aside from a bad habit of crashing cars (and certain Windows), and the BEAST we know as Cluster HA. Almost 10 years ago when prescribed Nardil for depression, I accidentally discovered that the Mono Amine Oxidase Inhibitor (MAOI) Nardil (Phenylzine So4) had a prophylactic effect against the HA's onset. This effect occurred for me at a dose of 45 mg per day and began as soon as commencing. This was well before the anti-depressant effect kicked in which took about 3 weeks.
However, 10 years is a long time to be on any drug and unfortunately this beneficial side-effect is losing its effectiveness. I am now weaning slowly off the Nardil. I write to mention that Nardil MAY help you, however, with the following qualifiers:
1: It is a very powerful and non-specific drug in that it has many side-effects aside from the excellent anti-depressant effect it is prescribed for.
2: A special diet MUST be adhered to whilst on Nardil. Basically these include: matured cheese, red wine, beer, pickles and aged meats. The culprit chemical in these products is Tyramine and can cause the body to release a large amount of adrenaline leading to a hyper-tensive crisis (MAY be FATAL).
3: Certain medications such as analgesics and anaesthetics including some OTC medications must be used very carefully. The list of drugs contra-indicated is quite long (Check with you Health Professional).
4: In my PERSONAL experience, long term use leads to a very difficult time when you have to come off the drug.
Bear this point in mind please.
If your cluster headaches have NOT responded to anything else for relief and you think you can abide by the above restrictions whilst on Nardil. I suggest you ask your health professional if it may be worth a try for you.
Several of my friends have followed my suggestion and have obtained relief from their migraine and cluster headaches. Nardil is also effective at alleviating depression that failed to respond to the newer SSRI's on the market.
I offer this in light that you discuss this approach with your health professional, as Nardil can have a serious effect on blood pressure leading to hyper-tensive crisis (extremely high blood-pressure that can be fatal). This MAY happen if the diet is not followed or any of the drugs mentioned above are consumed.
Please do not BORROW Nardil from a friend.
It can KILL if the drug is abused.
Dr Undies
I have a question. I have been reading up on all types of headaches and none of them seem to fit me. I get horrible throbing, pressure headaches in the back of my head when ever i work out very hard. This just started a couple weeks ago. And now they come on with much more ease than the first ones. Whats wrong with me? When i get the headaches i cant stay still the pain is too bad. The pressure in my head is intense and i only wish i could severe my head to end the pain. Will someone please e-mail me a response.
I had one migraine in college that lasted three days. The headaches I have now are VERY different
from that one incident and started in 1997. I thought a
migraine was bad, a cluster headache cycle completely redefines
the realm of pain.
They diagnosed a tension headache, even though I could
hardly stand up, or remain still, so what I looked like was
some weird form of crab scuttling on the floor. This was
not tension! I went back and they told me it was a migraine
and ordered a CAT scan. The pain did not go away, and they
told me it couldn't be a migraine because those only lasted
three days.
The pain was so intense I thought I had a brain tumor and was
actually hoping they would find one because then they would
treat me or tell me I was going to die, either way I would
get some relief. I detest the look people give me at a doc's
office when I say I have HA's. Many volunteer the fact they
have sinus headaches and those are TERRIBLE and I want to
punch them.
They asked me to keep a headache diary and I discovered it
is easier to keep track of the days I didn't have pain than
the days I did. They start with someone
ramming an icepick into my left eye, nausea, tearing and
redness of my left eye, and a runny nose. I usually get very
clumsy right before a cycle hits and that continues until
it is over. Extreme anxiety (I can't sit still) and insomnia
The pain is so bad I have actually hit my head against the
bathroom wall. Facial and neck pains go with it and the
pain is always on the left-hand side of my head. Vomiting
makes it very difficult to hold down medications and I have
had to flush many of those EXPENSIVE little pills down the
toilet. If I flush to many of the pain ones, I can't ask
for more because then I am drug seeking.
I have seen six headache specialists since 1997 and my med
list of trieds reads like a pharmacy inventory
checklist. In 1998, I spent two weeks at a Headache
Clinic in "detox". I saw a psychologist, a pain
therapist, a nutritionist and a physical therapist. They
determined that I don't have a drug problem, I'm not
chronically depressed as many of their patients were and I
was already adjusting my diet as they recommended.
They also determined that there was a "vascular irregularity"
on the left side of my head. All CAT scans, MRI's, EKG's,
to date have all been normal, so this is the only medical
indication of a problem I have ever heard of. I gave up
all pain meds at this time because even though I did not
abuse them, I was told they could contribute. They told me
I had some entirely new animal called "cluster migraines"
which I thought was interesting, since I had never heard
of them. On mentioning that fact, I was advised that all CH
sufferers were men, so therefore I had cluster migraines.
I was given 10 very expensive prescriptions for
preventatives and abortives and sent home. It was not
unusual to pace for 36 hours without sleep because I
couldn't sit still from the pain and anxiety. When I
did sleep, I had the pain in my dreams, or it woke me up.
A few trips to the ER when the pain and vomiting
were so severe I was ready to throw myself off the nearest
bridge. Abortives work well for one headache, but the next
hit and another and another till I had exceeded the number
of abortives I could have in a 24-hour period.
A pregnancy and I had to give those up as well. The
headaches were severe during the initial stages of
pregnancy that they decided surgery was less
of a risk than continuing with the current pain level. I
had the surgery (craneotomy) and at that time was diagnosed
with clusters.
I did experience significant relief once I was past the
healing stage. But after two years with only two flare-ups,
they are back and I am miserable. I don't want to "treat"
my CH's, learn any more bio-feedback tecniques, pop any
more pills or "cope" with my pain. I want a CURE.
For you guys out there who have been told men
couldn't stand the pain of childbirth...
Childbirth was easier!
I have had Cluster headaches for 26 yeaers. Lithium controlled them with one or two exacerbations per year. I became toxic on Lithium and have had daily excruiating headaches for 5 months. Tried Topamax, Prednisone, Maxalt-which aborts the headaches but costs $100 for 6 tablets and it not carried in the VA Formulary so it is an out of pocket cost. I am on SSD with limited income-any suggustions would be appreciated. the drug Lamactil has been reccommended byt the side effects may be major.
From about 14 to 24 I had "Classic Migraine". At about 41, I started clusters - I didn't know from clusters, as you all understand - and went through the usual cluster/remission phases for 5-6 years. Then I went chronic - no relief. My neurologist kept stepping up the level of treatments to try to prevent them. We settled on DHE-45. Felt like acid when I injected it, but it usually curtailed an attack. Usually. Then in '92, my R. coronary artery spasmed and slammed shut. DHE-45 side effect. The artery is still shut. No more DHE-45. My son-in-law works for Apria Healthcare and told me that O2 was being used for clusters. It works!! not all the time, but even at its poorest, it dulls the pain a bit.
In 1997, the headaches quit. 13 years. They tell me that we're supposed to outgrow them by our mid 50's. I just turned 58 this year. They came back two weeks ago. With a vengeance. I still had my O2 tanks. Here we go again.
Blessings to all who suffer with migraine and clusser headaches. I'v had headaches since I was about14. 4 years ago I was diagnosed with Trigeminal Neuralgia, plus fibromyalgia, rheumatoid arthritis. It is so good to find this site and hope to get to know more of you. While I can't take away anyone's pain, I can and do listen and encourage. I'm on a number of drugs for just the trigeminal neuralgia - had to early retire my job 3 years ago, but Im still believing in my heart tgat I will be delivered and my family will see once again, the face of the ones who love me no matter what, my husband, sons and many other family members as well as church. Without this
knowledge I would not have survived.
I am 42 year old female who suffers from what I have come to believe are cluster headaches. They started when I was about 35 years old and has become worse with each bout. Basically I get a throbbing pain(As if someone is stabbing my eye) that last for 24 to 72 hours. During this time of the bout the throbbing is constant put the level of pain increases or decreases. Physicans have treated me for migraines but the drugs do not work for me it only increases the pain. During this 7 year bout I have only not had an episode when I was pregnant. It seems like wine(even a sip) will bring one on. I have stopped all wine but I still seem to get them very 6 to 8 weeks. The last bout I thought my eye was going to explode. Hopefully after doing my research, the physicans will confirm my diagnosis and start treatment. I will keep you updated. Thanks
I am a 50+ year old man, married to the same worderful girl for 27 years, father of 2 beautiful girls, and have been suffering with CH's since I was around 10 years old. I have never met another CH sufferer and until I found this site, I always thought I would never find anyone who would fully understand the agony of a CH episode. I have had it interrupt some of the most important events life has to offer. I am now going through a series that began about two weeks ago. It'll probably last another three weeks or so...less if I'm lucky. The thing is, this is the first episode since Christmas of 1994! That was the first time I was introduced to Imitrex. Even though it is expensive, my wife and I would have paid anything for some relief. It's so good to find a place where there are people who understand what this is really like. I look forward to learning of others experiences and how they deal with the monster. Thank you for your site!! JJ
Hello, sorry for my bad english (i am French)I have "algies vasculaires de la face (French words for cluster headaches)since 20 years (i am 37 years old) Thank you for all of you. Friendly Christophe
Hi,
I am a 34yo woman who always felt that I was the only person who suffered from cluster headaches.
In fact I was told t hat I was NOT suffering from cluster headaches at all, that women do not get cluster headaches.
I was told I was suffering from cluster "like" headaches, if you can believe that. I was tried on several medications
including Imitrix...but nothing works fully. I also find that Exedrine taken during the daytime attacks can help dull the
pain to allow me to be a functioning person and be able to work. I am so glad to see that there is a support group for us who
suffer from the worst of all headaches.
Thank you....Stacey
Hi, I'm 43 just today I found out I have CH. I have always had Headaches on
the left side. But never did anything but take 1000mg to 2000mg
of asprin every day. But in Novvenber of last year. I got them so
bad that I could not see out of my left eye. I had to do some thing.
I thought I had a stroke or some thing when it started. I guess I was just being a male.
I have to say that my doctor was great he did the MRI & then got me to a speciallist.
The frist one was ok. But he said it was magrines. But the insurance would not pay for him.
Now I have one the insurance will pay for. I take it day by day. What's worse is the job I have is great,
but there are time that I can't do my job. Work has been great letting me get off the phone. I'm happy there's
a site on the web for CH.
hi i believe i have become a chronic sufferer!! ive been in the same cycle now for 8 months and still counting. they put me in the hospital a few times for a few days at a time to give me a rest after basically no sleep for about a month or so. you know doc's cant put you in the hospital b/c they want to gotta abide by those insurance companys. my first ch was when i was 18 and it only came 1 day a week for 2 months on the same day each week and around the same time. now they have changed.i dont know what to do im realizing im gonna have to live with this maybe forever and im only 21. i cant even go to the grocery store anymore, dont like going places my myself scared of getting a ch,cant make plans, what about kids??? im scared this is going to stay exactly the way it is and ill never have any relief or life again for that matter. ive tried every type of meds at least 30 kinds and ive had all the MRI, EEG, EKG, CATSCAN, SPINAL TAP, ETC.. im pretty sure that my doc is getting frustrated. i had 2 other neuros and they were horrible leaving me on migrane meds for 2 months and wouldnt try anything else. finally got rid of her and found the doc i have now. i get awoken in middle of the night cant eat,start vomitting,go blind in my left eye,get very aggraviated and mean. what else can i do laugh?? well im glad i have this site to talk to people who finally understand and dont say "oh you have a migrane i get those all the time" i laugh so hard and think "IF YOU ONLY KNEW"
Hi my name is Graeme,i am 36 and i have suffered from clusterheads since i was 17,i have tried every type of medicine from lithium to propranol with no success.My last bout of C.H only stopped last December after 5months of pure hell and not much help from doctors or any one else who doesnt know what we sufferers have to go through.This is the first time i have been on this site so i look forward to hearing from anyone who can share there thoughts on clusterheadaches
Hi my name is Graeme,i am 36 and i have suffered from clusterheads since i was 17,i have tried every type of medicine from lithium to propranol with no success.My last bout of C.H only stopped last December after 5months of pure hell and not much help from doctors or any one else who doesnt know what we sufferers have to go through.This is the first time i have been on this site so i look forward to hearing from anyone who can share there thoughts on clusterheadaches
my husband is a cronic sufferer
I am not the suffer from the miagrains , however, my 9yr old
daughter is and it is killing me not to be able to help.
I love this site. I have felt so alone in this for over 20 years and now in my mid 30's I have finally been able to read others describe my HELL to a T. I feel like god is laughing at me with these. There is no way to explain to others who have never suffered so what it is like. If I hear one more guy tell me his wife gets migraines I will punch his lights out. I'm sure true migraine is bad enough but migraine is to CM as beer is to grain alcohol
I have been a sufferer since about 1973. Right now I am going through a horrible cycle. I had Gamma Knife Surgery on the 8th of March of this year on the right side which is where most of my headaches have occured. However, they have now moved to the left side! What a treat! Sometimes I just wish my doctor could have just one of these horrible things. I know he is sympathetic but you just don't know how bad it is until you experience it.
hi my name is stacy and i cant believe there are so many people out there who understand what i am going thru. i have gotten migraines for about 18 years now (i'm 30) and last year i started with the cluster headaches. is there anyone else out there who gets both? at first i didn't know they were cluster headaches, i just knew it was the most intense pain i have ever felt it my life (and i used to think that about migraines, at least with those you can lay still and try to go to sleep) anyway, i went to my doctor and explained that these new headaches were NOT migraines but he blew me off saying they were and gave me more imitrex and put me on some type of heart medicine(propynolal, or something like that). i have since done my own research and found that they were clusters. passed your quiz with flying colors. they started the same time this year as they did last year with no cycles in between. they started about a week before we set our clocks ahead an hour. i can't beleive i can feel this pain and not be dying. i normally get them when i am sleeping. they wake me up at night or if i try to take a nap i will almost always get one. i feel like i am going crazy. i kick my legs and squeeze my head and i rock back and forth and moan and i want to scream. i feel like someone is stabbing me in the eye with a hot knife. the pain goes down to my teeth and this year has also traveled to my temple. imitrex does not work fast enough. the only bit of small(and i mean small) relief i can get is when i stick my fingers down my throat and make myself vomit. does anyone else feel a little better when they are throwing up? i know it sounds gross but its the only thing i have found that helps a little bit.(and i am not bullimic) i am in my cycle now and it will probably last 2-3 more weeks if everything goes like it did last year. i know i am rambling on but i didnt really think there was anyone who would really understand what i was going thru. my doctor didn't seem to understand or care. are there any tips anyone could give me to ease the pain during a headache besides making myself throw up or putting a ice pack on the back of my neck? i don't know what i will do if this comes every year for the rest of my life. my fiance is the most caring understanding helpful person but i know that this situation must be hard for him too. i try not to wake him up with my thumping and groaning and general frenzy that i go into but this is not something you can hide. my "headache place" i go to is the bathroom and i usually don't emerge until they are done. i know nobody has a magic answer to this and i've read some tips to try in other peoples stories so i guess i'm looking for someone who knows what i am going thru to acknowledge me. i don't know, i just think i am going crazy and i am scared.
Hi, my name is Marlane, mother of 35 year old daughter. She having her second bout with cluster. She is to sick to write now. We found something by accident. She took a ritalin today and stayed clear the whole day. Does anyone have any in put? Thanks
Hi there, my name is Jeanie, and I've suffered from clusters since 1987, when we first moved from NY to FL. I initially thought I had a brain tumor, and ran immediately to a neurologist! (Dr Khalidi, in Port Charlotte) He never told me what I had, but did tell me that I need to learn to live with the pain! The next doctor I went to had to go and get his medical book to look up clusters! (by then, I had self-diagnosed myself by reading books on my lunch hour at the book store!! ) Thank God, I have finally find a wonderful doctor, and he keeps trying to help me....sometimes it works and other times it doesn't. When I'm full blown into a cycle, they get so bad that at times I will vomit from the pain! (imagine throwing up being in such awful pain!) And, I don't quite know how I've done it, but I have never missed one day's work yet from clusters! But, I've had some bad bad days at work....I call it my "cluster hangover". My husband is very supportive to me; and I love him so much for that. I reached a point about 2 years ago, that I was thinking about suicide. (God knows, I've got the medicine on hand to do the job!) I had no life to live, and did not want the pain anymore.......but that is when I found my new Doctor! He put me in the hospital for 3 days, and gave me some kind of medicine that immediately broke the cycle! I love that man!!!! Anyway, that's my story.....oh one more thing before I end this novel....before you go to bed at night, make a pot of very strong coffee, and turn it off. As soon as the cluster awakes you, hurry into the kitchen, and heat up a cup of coffee in the microwave......and drink it as fast as you can. It will most of the time help ease my cluster, and/or shorten the length of the episode! Good luck, and God Bless all of my fellow cluster survivors!
Hi. My name is Chris, I'm 22 years old, and I've had CH's for 11 years now. I'm chronic, and haven't worked now for three months. It was really nice to stumble across this website. Sometimes I feel like there is no one who can really understand how I feel, but now after spending time on this site I realize that there really are people who know the agony of CH's the way I do. It's just nice to know that I'm not the only one out there. Best of luck to you all!
Hello every one: My name is bill and i have suffered from cluster headache every since i was 16 years old. I am now 39 years old. I have tried every kind of medicine you can think of.I worked in the health care field for most of my life, as a para-medic and then an emergency room tech. for 8 years.The only meds i have had any luck with were a combination of effexor 150 mg, klonapin 2mg, calan 240mg and oxycontin 80mg. I stayed on this routine for 2 years and was pretty satisfied, I have since quite taking these meds because of my experience in the med field and the side effects of some of the drugs.
While i was working in the E.R. any one who came in with a headache of any kind was deamed a drug seeker and treated that a way as well. This bothered me so much that i quite the med field.
See you all later. bill m.
I am 36 and have been suffering from CH's for about 18 years. I have tried numerous medications and treatments.I am looking forward to visiting this site more often.God bless each of you who suffer.
Does anybody have experience with a product called Relaxatia?
suffer
This is my first visit to your site. I'm thankful to know that this site is here for other CH's to come to and chat.I was diagnosed with cluster's 11 years ago. I've seen 11 different neurologist all over the country & I"ve tried "every" med they could think of to "try" from ergotamine to botox shots,demerol shots,DHE iv, even morphine iv treatments. I'm on my 10th week of this cycle & I"ve been classified as "severe chronic" by my doctor. I've missed the last 5 weeks of work this cycle & I"ve probably lost my job. It's THE MOST frustrating thing I've ever had to go through. I get the feeling that my employer & co-workers think there's no way anyone could have that "bad" of a HA to miss work. If only blood were coming out of my eyes or the side of my head, then maybe others who don't get CH's would understand the pain we endure everyday during our cycles. I've been getting 6 to 8 attacks a day for the past 9 weeks & I can only pray I'm coming to the end of the cycle.
This is my first visit to your site. I feel better already. I was first diagnosed having Cluster Headaches about 22-23 years ago. By the time I finally found a doctor(Neurologist) who knew what I had, the attacks had ended.
Good news, he said, there was med for it(Egomar), bad news - I'd probably have them the rest of life in the spring & fall. I never had them again - until they started a few weeks ago, late March, 2001. In the intervening years I have had: Bell's Palsy; Optic Neuritis and was finally diagnosed with MS about 8 years ago.
I've printed about 1/2 a ream of paper, so I have a lot of reading to do. GLAD I find your site. THANKS
Hello Everyone,
I don't really know what to say here and I hope I don't come across as sounding like an idiot. Well, here goes.
I am a male of the species and I am 51 years old. I honestly don't know how long I have been suffering with cluster headaches, although I do remember a short period of time while a teenager that I had severe headaches. But they went away until I was well into my adulthood and until then I almost never got headaches of any sort. Then one night while camping with my children I was awakened by the most god awful pain I have ever felt in my life. Like an ice pick sticking into the side of my head just above my ear. Its was so bad that I left my children in the camper and drove to the nearest town for some pain killers. (honest, I am not a bad dad)
Well, since then I have been getting these headaches about twice a year (sometimes more often). They last for about three months and go away. The longest I have ever been without a series of headaches was about fourteen months which just happened. But now they are back!!
I wish that there was never a reason to have a site dedicated to this problem, yet I am very happy this site exists. It is very ressuring to know that others are going through what I am. The pacing in the middle of the night. The quiet moaning (sometimes not so quiet). The inability to make simple decisions as any distraction from fighting pain only enhances it and just the lack of quality in life while going through an active cycle.
My heart goes out to all of you and I thank you so much for creating this site and for allowing me to post to it.
Best of luck to all
Ken
Sorry guys, I wrote yesterday but didn't write my complete email address. Here it is. Thanks.
I have been suffering with these cluster headaches for over 20 years. I get them for two or three weeks in the spring or fall. They last from 1 to 5 hours in length. The right side of my face and right side of my neck are always affected. Usually my right eye runs. Also, I have nasal congestion on the right side of my face. The pain is severe. I have been given various pain killers and they have become rather useless. Imitrex does not work. I am open to suggestions please.
Andrea,
Your e-mail address doesn't look complete. E-mail me and I'll answer your questions as best I can.
Bob Pahlow
Please, I am looking for some help. My father was recently diagnosed with cluster headaches. They start in his tooth then go to the roof of his mouth, his nose and sinus into his eye and up into his head. I met his physician today, I was not impressed!!! I am a registered nurse and I have learned about cluster headaches from your website (thank you). He is being treated with calan, neurontin and now topamax. Do any of these work!! I did manage to get a script for O2 from the doc, again thanks to what I learned from your website. However, he would not let me try the imitrex for my father because of possible chest pain. I told him about the lower dose you suggest and to take it the first time at the Dr. office while being on an EKG machine. He blew me off. Is there anyone out there who has cardiac disease and cluster headaches on imitrex. How about neurontin and this stuff called topamax what is it, does it work. Do cluster headaches start in the tooth. I would appreciate any help, he is desparate for help. He went to a psychiatrist for depression because of the headaches and they put him on 15mg of Valium!! Is is just me or does anyone else think this is a bad idea!!Please help, thank you, from Andrea
I think I may have had ch for several years but they weren't
too bad and by the time I was ready to seek medical
attention they woul be gone. About six weeks ago they
started again. Only this time they they were getting more
and more painful and frequent. Although none of my teeth
were sensitive, I got one right after chewing on a piece of
candy so I thought it might be an abscess tooth, so I had an
xray which was negative. I finally went to a Dr who put me
on amoxillian and arranged for a CT scan. Although she did
suggest I might have ch's she didn't define them so I didn't
really have a clue. She did try maxalt and codonone which
didn't phase me. I then tried ketoprophen, which gave me
very hard CH's every 2hrs until I quit taking it (worked
great a few years back when my back went out).
Anyway, it was when I found this site that I discovered that
I had CH's. Passed your quiz with flying colors. So here I
at 56 wondering if they will ever go away. Only thing that
works so far for me is Nyquil to a point and a cup of very
hot water that I can press against my face an move around.
O2 burns my nostrials and they won't let me use a mask, so
not sure it that works well or not. Sometimes an ice cube
rubbed around my face will also help if they aren't too
severe. Also, my upper jaw can get very painfull like an
abscess tooth. I find that (still using very hot water on
the rest of my face) chewing on ice chips at the same time
helps relieve the jaw pain.
By the way, if you try the hot cup of water, try to find a
mug that doesn't have any graphics on it, as the graphics
get hotter than the rest of the cup and will burn.
Well, hope this helps someone. Wish me luck.
hi!
i don't know exactly what to write here, other then to say it's terribly moving for me to see that there's so many people with similar problems to my own, i'm sat at work at the moment trying not to cry! i think what i suffer from is migranes & not clusters but this does last for up to 4 days sometimes. i've tried acupuncture for a year now (in combination with chinese medicine) and i think allthough it helps, it's not the answer to my problems, obviously like everyone out there i'm searching for answers, i don't want to take any more drugs except in the moment when i just can't take any more, the things wreck your liver amongst other things, so i'm looking more for alternative help & therapy, i'd really appreciate any tips!! i think the only thing i can share with you people out there is this, you're not alone! you're not a freak! (allthough i sometimes feel like one too) don't give up!!
take care neil
At 54 I'm not sure I can remember "before clusters"...but they have at least been more widely spaced as I age. I'm certainly in one now, the last was 13 years ago, and then another 12 years back to the previous. Before that (1976) they were more frequent. Like many of you I visited many doctors who had no idea. In '76 I went to the library and checked out a book on headaches, there was a whole chapter on Clusters, I knew I was home. Just so satisfing to have a name to call it, you know the feeling. When the pain came again in '88 I was referred to a neurologist and for once, he knew what I had. Sansert was prescribed and I did pretty well with that, it's what I started taking today.
Best to you all,
Jim
I've been suffering from migrains since I was 5, then at the age of 16 I started to get CH's about twice a year (spring/fall). The first time I went on this website (3 weeks ago) I cried with relief knowing that I'm not alone. I love my doctor (Dr. Kudrow), but not even he can help with the pain I suffer at the hands of the insurance. Thanks for being there-people who truly understand what I'm going through.
Delighted to find the site and knowing I'm not alone.I am 47 years old and not suffered at all since my last bout,7 years ago.Sat in the pub with friends last week enjoying a pint of Guinness,when it happened.Within 5 minutes I had a full blown attack and have had 2 more since.I'm worried,frightened but at least I now know what's coming.It was so good to find this website and read through all the other poor suffering folk who are cursed with this condition I take encouragement from it and I wish you one and all peace.
Feel free to e.mail if you like.
Best wishes and hope to all.
Mike
My clusters started on March 4, 1999 at 10:30am and lasted until May 15th when a neulogist diagnosed my cluster and started me on Indocin. Headache was gone within 24 hours. Unfortunately, it doesn't keep them away. However, after reading some of the posts, I feel incredibly lucky that I was taken seriously immediately and that I have found something that does help with the pain. My clusters last for about 6 to 8 weeks. Processed foods containing "natural flavor" (not MSG), exercise, alcohol,flying all make them worse. Combination of an ice cap, indocin and marijuara all make them better. On the worse days, I take enough vicodin to knock me out and sleep through it. Chiropraters make mine worse yet accupunture will help for a day or so. A faith helper helped once too. Most doctors are useless, I have lost count with the number of different meds I have tried to stop them. I get looney when I take too much Indocin, so I am always doing a blancing act.
It really does help to know that there are others out there like me. Nobody I know understands what I go through, let alone even knows what a cluster is. In the past I have been so depressed as to be suicidal. This was before I knew that eventually the pain does stop and there are long periods of relief. I am currently about 5 weeks into a cluster and have spend the last 2 days in bed with my vicodin and marijuana. Today is a good day, just feeling the "shadow" or as in my terminology--brain fuzzy, like someone took a potato peeler to the inside of my brain.
I have a major presentation in 3 days and I am just hoping the pain will stay away long enough so I don't have to cancel. Thanks for this site and for letting me share. VJ
Have had clusters since 1987. Diagnosed in 1991. They are morphing now into chronic. Has affected everything. My family relationships, my work, my personality, my values.
I have suffered from cluster headaches for over 40 years and believe I have tried every known medicines for them. 2 years ago I had a nerve block injetion that gave me absolute relief for two yeas, but they have come back.
Hey,
Well I'm sort of a friend to Vicki Butler. In which I meet her almost about a year ago. So well I do suffer from cluster headaches and to tell you the truth. They hurt like hell but oh well, they are just physcological.
Hi, I just was wondering what exactly is a cluster headache? My 12 year old son suffers terrible and i have been told his pain is so many things (mostly psychological) but if you saw this kid in pain then you would know it is real. Unforunately none of his doctors etc.. are around when they occur. It is worse in school because his teachers are so jaded that they really don't help any. Can anyone get back to me and tell me "something" Thank you
Hi,All! just doing some research & came across this page! I feel like i'm home now(:!! I'm 33yrs male and was diagnosed with c.h in the 4th grade): Sometimes I just want to give up.I really can't take this pain much longer!
I've been a CH sufferer for 30 years now. I can still remember the very first cluster headache that I ever got . . . I was sitting in class in college on an autumn afternoon when the pain behind my right eye started. As the stabbing pain intensified and spread, I was incredulous -- I had no idea that a headache could be so severe or excruciating. It was a nightmare trying to tough it out while sitting in a classroom. I still remember the book being discussed in class (it was "Moby Dick") -- and that was thirty years ago! I saw several doctors over the next few years (including eye doctors), but it was many years before I was correctly diagnosed.
Anyway, I recently started a new cluster, after not having any for two years. (In fact, I just got over one. I'm at work, and while I can turn off my lights and shut my door, all our offices have windows. I imagine I presented an interesting sight when I started to sob, and fell to the floor, and rolled around in agony, completely oblivious to whether anyone saw me or not.) I had hoped that I was finally rid of them (I understand that they can cease altogether in your 40's), but no such luck. I had tended to get clusters every year or every other year, and they would typically start either late summer/early autumn, or early spring (I understand that, for some mysterious reason, the period before Easter is the most common time to get them if you are a periodic rather than a chronic sufferer). I usually get one, sometimes two, a day. They come most frequently in the late afternoon, or during the evening. Occassionally I will be awoken with one during the night, but unlike the typical CH sufferer, that is not a regular or frequent occurrence for me.
I know most people reading this will be familiar with the story of the symptoms, but I found it oddly comforting reading other people's descriptions of their particular agonies, so here goes: I get a dull, sickening pain as a shadow, with a gradual increasing awareness that I can't concentrate and that something is wrong. I realize that a headache is on its way, and at some point, I'll get the first searing, stabbing pain behind my right eye. Very quickly, the pain accelerates. I'll have a constant, agonizing ache that spreads to my temple, my right ear, my jaw, and the back of my neck. But at the same time, I'll get sharp, knife-blades of pain that stab the back of my eye, in my right temple, and at the back of my neck. Each time the stabbing pain happens, I'm oddly surprised, as if I didn't know that it could happen, or that it could be so sharp. The pain is so bad that I am almost aways sick to my stomach (I understand this is rare), and feel like I'm going to throw up (I almost never do, though). I can't tolerate any light, or loud or sudden noise. Any attempt to do anything -- think, write, speak, even to remove uncomfortable clothing -- is intolerable and makes the stabbing pains worse. By now, I've fallen to the floor, and rock back and forth, press my fists to my temple or to the back of my head. I will frequently bang my fists on the floor, or against my thighs. I will involuntarily cry out loud, or curse, or beg that the pain will stop. Usually at the beginning of an attack, I will burst into tears and sob, but as the pain intensifies, I can't continue to cry because it makes the pain worse. All this movement will at times make the pain worse, but I simply can't stay still. I know most of you will know what the pain is like, but I simply can't describe it. While it is going on, I think I can't endure another 30 seconds of it, but I know I will have to -- that it will last at least for another 20 minutes, and, if I'm really unlucky, for another hour. I often think about what it would be like to be tortured, and whether having these headaches would make me stronger or more able to withstand torture, but I realize that the experience of these headaches would make me less able to withstand any torture, because I simply could stand the thought of enduring pain for more than 30 or 40 seconds. During the period of an attack, I enter a different frame of mind -- I become unaware of my surroundings, while at the same time I experience heightended sensitivity and sensation, with an oddly intensified mental state, and I often can't remember things after the attack is over (like where I put or moved things during the attack). The feelings of isolation, desperation and despair during an attack are overwhelming. The worse part is, all of the writhing, pounding, pressing, rocking, sobbing, and shouting out loud really do nothing to relieve or diminish any of the pain, but I continue to do these things out of compulsion or desperation. Then, after a period of time, one of two thing happen. In prior cluster periods, the the stabbing pain would gradually subside, and I would fall asleep, and when I awoke the attack would be over. With this most recent plague, the stabbing pain stops abruptly, as if whatever caused it has just dissolved in my brain. Unfortunately, under either scenario, a dull ache sometimes will be left in the wake of an attack, an ache than can last for several hours.
Very few medications have helped. For a while, huge blasts of prednisone would stop a spell of clusters altogether. Unfortunately, ten years ago, while I was taking prednisone for clusters, I developed type one diabetes -- which I subsequently learned can be a side effect of taking prednisone. Now that I'm diabetic, I can no longer take prednisone. I started taking sansert, which offered some, but not complete, preventative relief. Unfortunately, with this new spell of headaches, sansert seems to be doing nothing. I've tried lithium, cafergot, verapamil, egotamine and other ergot-based drugs, and none of them help. In short, I'm screwed.
Unfortunately, the headaches I've been getting with this current spell are much worse than usual. I'm not quite sure how I'll get through it. They usually last for at least 12 weeks, so I don't think I can expect them to stop until the end of May at the earliest, but based on past experience, more likely they won't subside until the end of June or possibly even July. I just found this site, and it's a great find, and it's been a tremendous comfort to tell my (very long) story. As bad as I think my experiences have been, my heart goes out to those CH sufferers who get multiple headaches a day, and those who have been chronic sufferers -- I can't even imagine what it might be like for you. As far away as June or July seems to me, the one thing that helps me is knowing that this spell of headaches will eventually end.
Thanks for taking the time to listen.
Tracy L. - you didn't leave an email addy so I hope you see this. Your headaches probably aren't clusters, BUT could be serious. You may have high blood pressure or might be at risk for stroke. OTC medications containing phenlypropanolamine HCL can also cause the pounding brain pain. My advise... see the doctor ASAP and ask for a MRI.
Im 37 year old male. I have been having cluster headaches about 10 years . I generaly have an epsoide once a year lasting one to two months. I went to my doctor once a waste of time. I dont like to take drugs of any kind.I do alot of running 20 to 30 miles a week. Has anyone had any experence with heavy exericse releaving the pain.I think when an attack starts getting on the treadmill and running a few miles.
Hi I have been suffering with a type of headache that bothers me every now and then. I have been told that it was a tension headache. It starts in my neck and moves in my brain like pounding.Sometimes it makes me sick to my stomache and I can not turn my head because it hurts to bad.Chould any body tell me what is wrong.
Hi, I am hitting my second bout ever. It hit hard last night 6-7-8, and today it feels like a 3-4. I have no insurance, and was wondering if anyone in same boat, and what they have tried? Also, I appreciate anything from anyone, but someone in the US might help more, as they have the same health care..
Hi,i have cluster headaches,i'm not in cycle now but,i take 400mg.b-2,3mg of melatonin 1hour before bed&80mg verapamil,3times a day.when in cycle i take B-2,15MG.MELATONON,1HOUR BEFORE BED,@3-10MG.NORTRIPTYINE HCL,BUT HEADACHES GO FROM A 7-8-9-TO-3,4,5 STILL HURTS BUT I LIVE WITH THEM,PS WIFE IS HAPPY TO,
Hi,i have cluster headaches,i'm not in cycle now but,i take 400mg.b-2,3mg of melatonin 1hour before bed&80mg verapamil,3times a day.when in cycle i take B-2,15MG.MELATONON,1HOUR BEFORE BED,@3-10MG.NORTRIPTYINE HCL,BUT HEADACHES GO FROM A 7-8-9-TO-3,4,5 STILL HURTS BUT I LIVE WITH THEM,PS WIFE IS HAPPY TO,
I had CH for two years during the spring and summer months. I quit smoking and the evil monster went away for three years, but now it's back. I really don't understand and wonder if this has happened to anyone else.
Hi.I'm a 35 yr old male who suffers from chronic cluster headaches.They started 2 yrs ago and i'ld get 2 a day,one was always at night and would last 45 min. to an hour.I take verapamil twice a day and have Imitrex nasal spray.It has reduced the frequency of my headaches to about 3 a week.The night headaches are the worst.I fight the pain for as long as 15 min. before it breaks me down.after 20 min.,I literally cry from the pain.It's so intense that i sweat and shake as i pace or rock back and forth,moaning,more like whining.I glance at a digital clock from time to time,knowing my headaches usually last 45 min. and do quick math to see how long i have to go.This causes a new wave of pain but i have to look,usually only to discover that what i thought was 10 min. was in reality only 2.I try to tell myself that i'll get my life back soon but, all of my remaining energy is used to endure the agony from one second to the next.I know the end is near when i get goosebumps from the sweating coming to and end.If i feel a chill,i'm minutes away from the end,and slighlty elated.Elated because the moment my headache ends,that moment is my furthest possible time from my next headache....
hello, i am 41 years old. i have suffered with the devil for 4 years. last week i started having my cycle of devil.
up till last week i had been cluster free for 14 months. though they where gone for good "wrong answer".i've tried
depakote with on luck now i take zomig when feal one coming on an also have oxygen. the oxygen works better than anything else i've tried. thanks neal
Hello, my aunt who is 63 has been taking "Tamoxifen" for the past five years, she "had" breast cancer but is free of it now!! Right after she posted taking to Tamoxifen she began having what her doctor say are Cluster Headaches. This has been going on every had since 3/11/01. She is in so much pain that she wakes in the middle of the night. I am trying to tie the two together. The MIR came back ok, but still no answer if her body is just detoixing from the Tamoxifen. Please help if you can, she leaves on her first trip to Hawaii in a few weeks. Thanks
I am 31 years old and have suffered with CH for about 2 years. I can't even begin to say how comforting it is to know that I am not the only one out there who ends up thrashing on the floor in absolute agony at 3 am. It is so frustrating to try to explain what this is like to someone who has never experienced this beast. About 2 weeks ago I started another round, the first in 8 months. I have to call my neorologist this morning. Thank you fellow clusterheads!
I am crying so hard I am probably miss spelling every other word.Everytime I read anything on this Web site, I am reading my past,present, and probably my future. I rethink everything I plan in the future,vacation, going to visit my Mother.....
I haven't told my husband just how long this could possible last {lifetime}. I need to give him a break, a time to rest, we{ I say we} have been CH free for 5 days now.
I pray........ Lord may all that is on this Web Site be STRONG. Watch over those who suffer and their families.
May we live for you and follow you. May you be our light in our darkes hour. In Jesus Name.
Finding this site was an answer to my prayers, Today I am not alone :)
Hi
Please read about my new surgical treatment for migraine and other headaches such as Cluster Headaches Syndrome, also you can read about new self treating for all kinds of vascular headaches. All that you can see at http://www.alisultaneh.8m.com
Thank you
Ali
My husband has had clusters on and off for 7 years. He has chronic daily clusters for about the past year and a half. He's been hospitalized several times. He almost died last year in the ER and they had to put him in the CCU on a ventilator. So it's been a scary time for both of us. Even though we live in New Mexico, he's now living with my parents in Chicago and going to the Diamond Headache Clinic. He's been living there since Nov. Progress is slow. He also has a rare blood disorder - hereditary angionuerotic edema. It makes treatment with standard medicines difficult. Do any other cluster sufferers have HAE? Both are fairly rare disorders. He has tried many different medicines and went through the 21 bags of histamine by IV in chicago. Still no relief. He's had two surgical consults, but has been turned down. He often gets depressed -- me too! We spent more than $10,000 last year for medical treatment. I have to stay here for my job and to keep him insured, so it's been a rough go. I've been reading this site for about 2 years and finally decided to sign in. I search the Internet almost every night looking for answers on how he might get some relief. Best wishes to all. I can not offer relief, only my love and compassion to you all. No one knows how bad it is -- except for the sufferers and their families. And the doctors who don't give up on them. Blessings to you all.
I hadn't had one for weeks. i was going off my medications and starting to think i could have a real life again. I told my wife i wanted to do just one 'specisl' thing each week (like a movie or a concert, or even a museum). and she said, ever so gently 'but some of those things take some PLANNING. and i haven't been able to plan anything for over two years. so we went to home depot for some wood, and it struck. i had forgotten how horrible it can be. if i've ever had a 10, this was it. i don't ever want to have it happen again. i give up. i want to die.
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