|
|
|
|
|
 |
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
 |
 |
 |
|
 |
|
 |
|
 |
|
 |
|
 |
|
Below are the guestbook entries from September 2000. 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 did any one ever try oxycontin? it works for me. i have had headache for 20 years, i an 51, look into oxycontin,mike mike191@msn.commike lemoi <mike191@msn.com> cranston, ri USA Saturday, September 30, 2000 at 18:22:22 (EDT)
is there anybody out there !
I have my "period" now, after 10 days with murring and minor short attacks, there is no longer any doubt. It got me again, striked from hell, after two years of letting me forget, not realy, but enough for me to belive "it" had forgotten me. 2 to 3 attacks per day. sumatripan injections make me able to continue sosial and work activities. I am 41 years old, male.I have had cluster for about 8 years. normally once a year, but the last period was in 1998, so I hope there is a change going on. My periods normally stays on for about 5-6 weeks. This time there was an "introduction" time for about 10 days, which where not necessary to medicate. in good old days I used 100% medical O2, supplied free, combined with cafergot comp, with good results. the problem started when number of attacks increased. cafergot is not recomended in higher doses! At the end of my last period my doctor suggested Imigran, with success. Best regards andre`V.
thank you ! what a load off my head (so to speak) i'm not alone!!i'm 36 now,over 15 years of this,on average once a day and once a night,for about two months,two or three times a year, each one lasting from one to two hours,,i know this is mild compared with some of you out there,i have spent hours reading your letters,you all have my commpassion and sympathy,i know you dont want sympathy !! you just want it to go away!!!if i had seen this site before i saw the neurologist,, i would have diagnosed myself!! why,why,why does it happen?? we know the triggers,but why do just some people get this thing, and suffer for so long? for me,it goes away in the summer and dead of winter ,almost every year,embarrased about it, i would just try to deal,trying every sinus, cold, allergy pill there is,never really agressively asking for my doctors help,well ,, it's been too long, i've seen a neurologist, and he has prescribed oxegen for me, i havent tried it yet,, but i will let you know if it worked for me.i will think positive,, i'm courious,,are any of you extremely creative,sensitive,or above average intelect?wheels always spinning , think alot? (in your opinion)i've read, and read ,and you all seem brillant !i'm an artist and musican ,but "it" is starting to interfere ,dont give up , i wont ,i wont describe my pain as i'm sure you all know , i have all the same feelings as you ,in the mean time all i can think is , we are being reminded of what it is like as a spirit to live in a human body,and even though life has pain,, at times it can be beautifull,,so the spirit doesnt want to leave yet,we are all searcing for that bliss,, and if we are some special chosen ones,,i hope that when the time comes for the spirit to move on ,,there will be no questions asked at those pearly gates!!! thanks agiain ,, i will be back on again soon ,, good luck to every one !!
thank you ! what a load off my head (so to speak) i'm not alone!!i'm 36 now,over 15 years of this,on average once a day and once a night,for about two months,two or three times a year, each one lasting from one to two hours,,i know this is mild compared with some of you out there,i have spent hours reading your letters,you all have my commpassion and sympathy,i know you dont want sympathy !! you just want it to go away!!!if i had seen this site before i saw the neurologist,, i would have diagnosed myself!! why,why,why does it happen?? we know the triggers,but why do just some people get this thing, and suffer for so long? for me,it goes away in the summer and dead of winter ,almost every year,embarrased about it, i would just try to deal,trying every sinus, cold, allergy pill there is,never really agressively asking for my doctors help,well ,, it's been too long, i've seen a neurologist, and he has prescribed oxegen for me, i havent tried it yet,, but i will let you know if it worked for me.i will think positive,, i'm courious,,are any of you extremely creative,sensitive,or above average intelect?wheels always spinning , think alot? (in your opinion)i've read, and read ,and you all seem brillant !i'm an artist and musican ,but "it" is starting to interfere ,dont give up , i wont ,i wont describe my pain as i'm sure you all know , i have all the same feelings as you ,in the mean time all i can think is , we are being reminded of what it is like as a spirit to live in a human body,and even though life has pain,, at times it can be beautifull,,so the spirit doesnt want to leave yet,we are all searcing for that bliss,, and if we are some special chosen ones,,i hope that when the time comes for the spirit to move on ,,there will be no questions asked at those pearly gates!!! thanks agiain ,, i will be back on again soon ,, good luck to every one !!
Excellent website, my brother suffers from CH's and I had to call him to tell him about this site.
-Fred, http://TheResourceNet.com/Herbal.asp
First of all I would like to say hello to everyone. Sorry to hear so many of us suffer from this terrible thing. What an awlful thing to go through, I had my first cluster attack about ten years ago, never knew what was wrong. The pain I would get was very mild and would only last about 30 mins. The pain was worse in my eye then in my head. I was also being treated for a thyroid disorder so my doctor always thought it was thyroid related so they sent me to eye doctor after eye doctor. Nothing of course was ever wrong. Adventually the pain would go away and return weeks later but this time alot more severe and now I noticed I was even experiencing pain which felt like it was comming from my teeth. So off to the dentist. As you guessed it nothing wrong. This pain lasted about 5 months off and on but I never had pain during the night only during the afternoon. Finally I was totally pain free for years up until three years ago when I would be awaken almost every night about 2-3 hours after falling asleep. What pain, I never experienced anything like it before in my life, the stabbing feeling in the side of your head and the pressure you can feel behind your eye. I decided to talk to my doctor again and I explained to him I was only getting these headaches after falling asleep. He sent me off to the hospital to have a CT scan. What a scary feeling all I could think of was here I am 26 years old and I'm going to die of a brain tumour. I thought for sure thats what it must be. Well thank god it came back negative. My doctor called me the next day to explain to me that I must be getting cluster headaches, he wrote me out a prescription. Thank god finally a good nights sleep after months of having my sleep interrupted. I don't know how I ever functioned in work getting hardly no sleep and once I got out of work I had to run right home and nap I was so tired every day, day after day. I wouldn't wish a cluster headache on anybody not even my own worst enemy. I can still remember the feeling how scared I was getting woken up in the middle of the night with that severe throbbing pain in my head and eye. I thought I was dying it was the worst feeling I ever had and I was in so much pain I didn't even care if I died. Now ten years later I once again get clusters they've started about a month ago and first they were almost pain free and I'd get about one a night but now forget it I get at least one every evening and up to three daily the pain is so severe sometimes I pray to god to take my life. I usually get them the same time each evening so I got this bright idea maybe I could trick the cluster and stay up and go to bed after the time I normally get them. Nope didn't work still got one a few hours after falling asleep and now I even got less sleep than I would of. I was even at the point where I didn't want to go to sleep at all knowing what was in store for me. I just started taking my medication again a few nights ago so hopefully I can put this behind me for now.
Good luck to everyone who suffers from Cluster Headaches, I hope some day we are all pain free.
This is a wonderful page,found it quite by accident.I feel like at long last I have found home.I have had this face ache as my family calls it know for 33years since I was 17 years old an have been told all sorts of things from imagination to tooth ache.It is great to read all about know I shall take the print off to my doctor.I get my attacks in the heat of the summer and when my body heats up from stress, mowing lawns, woken up from sleep you name it in the summer I gat it. Have not come across anyone else around me that has this so if anyone out there living in little old NZ (or else where wants a chat just email me.I can not get over the amount of people on the guest sign in book. My family are all very supportive for me in an attack and without them sometimes I would have gone crazy.I have learnt to go with the pain by rocking in my chair or on the side of our bed, and talking myself to the pain and letting it know it is not going to beat me.sounds crazy but it distracts me from the real ache.To you all out there in this big wide world you are not alone once you find this page, I now feel so much better and not alone. May the sun always shine for you all and your days be full of roses.Take Care .
Thanks for this site from a well-intentioned but clueless and therefore know-it-all/judgmental mom of a clusterhead.
I spent 12+ hours on the Net and the phone yesterday trying to find help for my beloved 24 year old son who is desperate over his debilitating "eye ball headaches." Though he was diagnosed with cluster headaches several years ago, I had no idea what this meant till I arrived at www.clusterheadaches.com last night.
You see, my son has another problem that was diagnosed before the cluster headaches -- alcohol and drug addiction. This has consumed our family, and has been the entire focus of all of my research and attempts to help. Consequently, I had dismissed his headaches as the end result of "frying his brain."
I am so sorry for him and for all of you -- and for my own [former!] ignorance about this awful (condition? disease? what?!!). The cover page of this site should be sent to family, friends, doctors and bosses of anyone who suffers from these headaches. The rest of us just don't get it.
Thank you for opening up my eyes (and my heart!). I'm passing this link along to my son in the hopes that he will find understanding and comfort in your community.
Don't want to embarrass him (or my judgmental self???) by signing my name or including my e-mail address, so I'll just close with prayers and hope and gratitude for all of you from a loving and newly enlightened mom.
CH Sufferer for 16 years.
Hey I'm back I went to see a chiropractor yesterday, boy that was a joke my back feels great and my neck feels fine but my Clusters are strong as ever. He poped and cracked everywhere he stetched and pulled on my neck and head for ten minutes I did'nt know my neck would do all that bending and twisting but I'll tell you one thing, he must have pulled just a little to far because I've never had a lefty it has always been the right side for me and they don't usually last over an hour,that's a long one for me,but yesterday after work I went to do a little deer scouting (It's almost deer season in soutern Indiana) and I was in the woods about six o'clock and started to get a headache not my ordinary righty cluster but both sides of my head were about to kill me by 6:45 I guess all that pulling and popping did something that the little Demon did'nt like it lasted until after 5:00am I've never had one last that long. I've got a question for anyone that knows the answer. when your having a cycle of aprox. 5 or 6 Clusters a day how do you work or do ya and if you don't how do ya pay the bills that keep coming wheather you do or not.I'm trying to raise a small family and can't seem to do it on 16 to 20 hours a week my wife works also but I still feel like I'm going to loose everything I've worked all my life for which is'nt alot but I do own my own house and two vehicles.We live in the country so it's not possible to walk or bus or cab from place to place I don't know how to feed my kids and pay the bills on the amount of hours I'm able to work. I want to work that's how I was raised It's just hard to do when you've had two or maybe three hours of sleep between the battles with the Demon over the past 4 weeks that I've been battling this cycle I've worked about 4 days or so I don't think I will get fired at least I hope to God that I don't I think my boss understands as much a he can he has headaches but not our kind the Demon Clusters well I've got to find a cure for me and all the other Cluster-Heads out there I'm on a quest I will leave no web-page unturned I must find a cure soon before I loose everything my wife and I have worked the past fifteen years together to create yesterday was my fifteenth aniversary the Demon Bastard did'nt even care it came to visit plenty even on my anniversary. well I think I've put it off for as long as I can I can't keep my fingers moving and my eyes open it's time to try to sneek a couple of hours in before it comes to wake me again, maybe it won't happen tonight maybe I've outlasted it this time NOT!!! wellI've got to try I can't stay up for ever although I've tryed because of not knowing what else to do hope that everyone finds there cure I'm on a quest for all of us wish me luck for the rest of the Cluster-Heads to at least find a way to pay the bills that keep coming Please God help me find a way before I self destruct.
Just looking
Glad to discover your site. I am 31 and have been suffering from clusters sine I was about 14. I am on beta blockers at the moment but they don't seem to be working. My attacks occur every 2 years, usually for 3/4 months but this latest one has been 6 months so far !!!
I am grateful to find this site and to learn that there are
doctors devoting thier time to rid the world of this demon we know too well.
Good Morning...sort of.
This would be my first post to this site...I'm not a clusterhead...but am married to one. We're at week 2 of this episode...the last one was in 1998. We just got diagnosed last week. I have a couple of questions.
Taco (my husband's given nickname) becomes violently ill with his headaches. I realize that this isn't "normally" part of the gig...but would be interested in knowing if anyone else out there does this. Everything else seems to be in line with the cluster diagnosis.
Secondly...the Dr. sent us home with a prescription of Stadol (yikes!). Taco tried Imitrex nasal in 1998 and his brain caught on fire....I thought I was going to have to rush him into the ER. He simply can't try the med again. The Stadol worked 2 nights ago, but during last night's episode...it just made him incoherent. Still in pain, but with absolutely no skills to deal with it. I'm also significantly worried about the addictive effects. I'm considering calling the Dr. and asking for an Oxygen prescription. Any thoughts?
And finally...I really appreciate this web site. The information is incredible. I feel helpless watching someone I love suffer in this way. I stay up with him...trying anything to relieve his pain...from reflexology to massage to pressure points to prayer and hands on healing...Kinda funny considering that I'm basically a fairly irreverant person! Also funny considering I have no training in any of those things!!!! I usually have to give up and resign myself to watching him slam his head against the shower stall while screaming in pain...help him to the bed when it starts to subside and then wait for the next one.
So here we are again....He's out at work (an amazing feat after last night (he's a cable lineman)) and has asked me to see what I can find out about alternatives to help relieve the pain. Finding the cure seems to be secondary at this point...he's on damage control at this point.
I'd appreciate any input. Thanks.
Starting my third bout with cluster headaches. Verapamil made the second bout better. I hope for the same this bout. I am thankful for this site, because I know I'm not alone with this suffering.
Happy to meet you all - currently entering month 4 of worst pain possible. Had been clean for 5 years so had hoped that the beast had finally retired. Glad that I've finally found a home!
did'nt know what I had until yesterday night. The doctors always told me it was
trigeminal neuralgia. The drugs they gave me actually had some effect with some
basic pain killers. But now that I know what I have I will go to the
London neurological centre and get something ....
It has been a shocking couple of weeks - every night and I am
shattered. Still I know it will end like it has for the last
20 years. But every year it's worse and I always thought that
it can't get any worse. But now I know there other things I can try
I have some hope. Have any of you tried the mixture of strong
exercise and OTC pain killers - it seems to work for me for the
last couple of nights. I may feel like death but I am going to get fit !
Hi, I am 32 years old and had my first attack 5 weeks ago. After visiting this site and finding out about other people who suffer from CH I think that I am quite lucky. Within 3 weeks of my first attack I saw a neurologist and receivced
medication (beta-blockers) which seem to be working. Thanks for a brilliant site, now I know I'am not ALONE.
I've experienced clusters since 1983, but have been free of them for the last five years. Now, at 64, they've returned. I had some success with ergotamine, and am wondering if there's anything new. Also, have any of you used the "gate theory" for relief? I'll probably be tuned into this site now for a while, looking for anything that might help!!
I had clusters for 9 years tried everything and nothing worked. Then i went to a doctor in KansasCity a Japanese guy and He Gave me a treatment of 6 shots in the back of my neck and 3 in my temple. It was a mixture of an anaesthetic and a steroid and it worked. Its been 12 years but know their back. I've had 1 last night and 3 so far today and its only 8:39. Wow the fun begins! Thank you for the support I'am going to need it. Dan
Hi.I am a 43yr old woman and was diagnosed with cluster headaches at 19.The bouts have come and gone with varying intensity for all these years. I hadn't taken any serious medication since early 20's, suffering in silence and ignorance. A sense of humour about life helped! Recent bad bout had sent me on a search and learn, with recently acquired internet access I found your website. You cannot imagine my relief....well, you probably can!I am now on Prednisone for a short stint and pizotifen as a preventitive. Only been 24hrs so I can't comment on the results yet! I will keep an eye on your web page. Thankyou for being out there. You get so used to pain (I also have Rheumatoid Arthritis)that you start seeing it as a way of life.
I thought I was one of Gods chosen few until I found this site. What a terrible ordeal to go through, but the bright side for me is that I have people who understand now that I have found all of you.
I am very surprised I found this site. Earlier this evening my sister in law called in complete panic. My brother, who is a clusterheadache patient for 15 years, had one of his worst attacks ever. I have seen what this is doing to him and I can say that this is one of the things you don't even whish to happen to your worst enemies.
Can someone tell me more about the type of operations (D5 nerve) etc. that are possible.
Hi, I've been a sufferer for about 12 yrs (34 yrs old). Cluster season is usually late Aug. to late Sept. Usually 2 per day, one in mid morning, one late night. I use imitrex injections and they work everytime, within 10 minutes. I haven't tried any other treatments other than some of the home remedies I read on the message boards.
If there is such a thing as a lucky CH sufferer I may be one. I have so far only maxed out at an 8.5 beast and the first doctor I went to nailed it in less than five minutes. He was at a walk-in clinic no less. I am precisely 11 days and 13 hours into this cycle which is probably my second with a period of greater than 2 years between occurances. I also have only been awakened once by the nastly little demon and seem to suffer most attacks in the mid-afternoon. I am sooooo happy to see that there are others out there who know just how bad this thing hurts. The best way I have found to describe it to non-sufferers is to tell them I can't even play along with Jeopardy on T.V when it hits in the evening. For those who know me, this is a mark of a truly disruptive event. I hope to join in discussion when I have a little more knowledge, or perhaps sooner as long as stupid questions are only chuckled at and not roundly derided. Thank you to the creaters and maintainers of this site. It has helped so much today I cannot tell you.
Shade and Sweet Water to you all.
Hi, I have had CH's for 14 years now, they come and go through out the year I have tried everything up until recently I was diagnosed with CH's I got a medical book on headaches and found out for myself but had to tell the doctor's what I have they have no clue about this problem.I have taken prednizone once and found it really worked I am now on verapamil which seem's to be working but I just might be out of the cluser cycle.I hope one day they will take us all serious and know this is a serious condition and not say it's allergy's if the medical field ever had these headaches and the pain we all go through they would take alittle more time on this and not just guess. I read all the account's on this page and I guess am not alone afer all.You all hang in there!!!!
I am so glad that I found this site. I have been suffering
for 8 years. I am in my 6th week of the latest "spell" of my
headaches. Three weeks ago I found a wonderful doctor. He
has me on 3 different types of prescriptions that seem to be
doing the trick. Since he put me on "Zomig" and "Verapamil"
at night , I have not been thrust out of bed from this
incredible pain. The other drug is "neurontin" @ 800mg
twice a day.
I am amazed that there are so many of us that are going
through this. My wife , like many of the other men here ,
has been my rock of sanity.
Thanks for those responsible for this wonderful site !!
Jeff Hall
my clusters have been in remission for 5 years until 2 weeks ago. 1 or 2 a day!also had trigeminal neuralgia 5 years ago, also in remission. is there any connection?
Hi all iam a 39year old male and yes im one of you us. I was 17 or 18 when i first became awhere of the meanning of pain. I have knowen for about 6 or 7 years now that they are clusters.Ihave made it through maybe 15 to 20 not 1a year becouse there has been times when 1&1/2 to 2 years go by but also times when 2or3 in one year so maybe 20 but hay every one is the only thing that matters right getting to the end of this one is all that matters to me anywhay its a good thing no guns in my home any more. Its come to close a few times becouse when im not in cluster i sure do love life thanks for letting me have my say
If anyone knows of a doctor who is understanding in Western
Washington please email me. I heard on the news tonight that
a Doctor in Cleveland Ohio was doing research on removing the
corrugator supercilii muscle (near the eyebrow). I searched
the website of Case Western Reserve University and found
nothing. I am willing to try this (I would try anything).
If anyone has heard of, or has any information on this
plese let me know. Thanks for being here!
They're back again. I missed three days of work this week; have to quit 'cause I know what the next three months are going to bring. I'm behind in school now, too. That's nothing new; thirty-four-years-old and still can't finish an undergrad degree because of these silly little headaches. Oh yeah, here comes the other monster: depression . . .
Just another cluster headache sufferer trying to find out more about my condition
Diets, diets, I have tried every one I've heard about, and nothing changes the CH. Cut out all fat, sugar, caffeine, dairy, citrus, and it means that you will live about 3 months longer in the nursing home.
Why isn't the good lord helping me?I feel like someone is stabbing me with a pitchfork in my eye.I hope this prednisone works.Or I'm gonna ask him to take me home.This is hell!!!!
Hi,
Thanks for this site. I have been a cluster suffer for 25 years. I go for a year or two with out having them and then out of no where they start. At first 1-2 times a day then building to 10 or more after a month or two. The last episode lasted three months this past spring and now I have them back. I have tried all sorts of things. Imetrex works the best, but only in the beginning after several weeks of use I become immune to the drug. Oxegyn works well when I can get the doctors and my medical plan to cooperate at the same time. This latest drug prescribed is prednizone. Its to soon to see if it works. I like the natural remedies better. Feverfew, Magnesium, Glucosemine , all of which I have increased since the onset of this series.
I am tired of all of the experts who know nothing of what is wrong and happy to see that the people at this site all have similar stories to tell. I have heard about stress weather or season changes, diet and of course the lack of exersize.
Well, I am a contractor and I work for myself and by myself. If doesn't keep you in shape nothing would. As for diet I eat low fat foods and have allways been carful to keep my diet consistent. And forget the seasonal thing , as you all know you get these things at all different times of the year.
I would be interested in hearing form others who have any new remedies or ideas. I will try anything to STOP THE PAIN!
This is my second CH. Dr. prescribed Methergine. Anyone tried it?
I'm so dizzy, but the pain is down to just a lot of numbness and
tingling around the right eye, ear through chin. Last time, that
lasted two months. . . .Am I normal? Is anyone else using Methergine?
Do you stop when the pain stops, or when all the sypmtoms stop? I
hate being dizzy.
Beware of Ultram! My neurologist prescribed it as a pain medication. Took one at 2 a.m., pain gone by 2:30. Back to bed. 3:00 a.m. and Bang, back with a vengeance. Then my Neorologist said "Next time take two instead of one." Last night I did just that, only this time there was a huge bang, worse than the usual CH. Now I'm dizzy and nervous. I'll survive the CH, but maybe not the medications
Just want to say how good it is to find this site. I am at the end of my 6th episode of clusters, having started 16 years ago and being diagnosed as sinus. My doctor is sympathetic and prescribes imigraine in tablet form which help if i take in time but often too late...anyway, am now feeling there are many more options to try thanks to this site and that I can make more sense of these awful headaches...thanks again!!
Just thought I'd add an entry about Cluster Headaches. I've had these things for over 25 years. I don't really know how I've lived that long with the pain but have accepted my life and tried not to damage my body or property as much anymore.
My last attacks was almost two years ago but they have returned. Getting 2-5 a day for the last week. I'm 50 years old and thought they might have gone away. Nope, they're still with me. I am so very sorry for those of you that are just starting out life with these things.
All I can say is to try and live with them. Well, it's 5am and I'm very tired. Last one didn't last that long. Maybe about an hour. I'm going to try and sleep some.
Don't know why I'm writing this. Maybe just to say you're not alone out there. Good night all.
This is unbelievable!. For years Doctors have shaken their heads when I tell them about my headaches. My friends don't believe me, probably think I'm a hypochondriac. And now, I find there are hundreds of us. I can't stay off this website, it's so wonderful to know that I'm not alone, even tho I wish we all would find a cure. Keep trying!
Hi, although I do not share in all of your pain I thought I might be able to offer you some additional ways to cope or releive the pain that you all suffer from!! I am a student at Grant MacEwan College taking a course in Massage Therapy. I have been interested in this alternative medicine for several Years because I suffer from Migraines. Though my knowlege is not very vast It is proven through scientific research that massage therapy can help relieve the tension and muscle pain that may cause some headachs. Another form of alternative medicine that may be able to help would be accupressure. In no way am i saying stop taking the perscriptions that you are all taking however I am saying that mabey with on-going treatment through these feilds you can lessen the persceriptions one has to take to get relief. Well I hope that my information will help some of you cope with the beast that you all suffer from in the future. Good health to you all and lees pain in the future to you all.
My husband has been a chronic sufferer for 22 yrs. He is 43 yrs old. He has had
a zillion drugs pumped into him over these years.A hospital in Toronto wanted to try and
experimental operation on him that had a 75% success rate. He thought the odds
were worth it so they took the back of his skull off and tried to kill the
trigeminal nerve so that he wouldn't feel the pain anymore, however they
snipped the wrong nerve and now he has no feeling on the right side of
his head and is totally deaf in his right ear and STILL gets and feels
all the same intense pain that a cluster brings. After that he was
referred to the Michigan Head Pain Clinic in Ann Arbor, Michigan. Dr. Saper
is a wonderful man who helped him a lot and even got NBC's Dateline to do
a program on cluster headaches and my husband was interviewed and they
showed a video tape of him on the floor pounding his fists and head
The Michigan head pain clinic is a good place to start for all you new
sufferers. Dateline picked this clinic as one of the best. Today he still
suffers like every day and his outlook on life is very dismal.
What a site for sore eyes! (sorry I couldn't resist)
I'm 25, have suffered cluster headaches for 5 years but have received little real treatment beyond painkillers despite visiting a number of doctors. And being English and so as unlikely to challenge a medical professional as I am to jump a queue, I had begun to give up hope. So I'd like to thank DJ for assembling this site and to everyone who has offered their insights, support and solidarity. I didn't imagine I'd ever cross paths with someone who understood what I've been living with, but thanks to the information here I now feel armed and confident enough to re-approach my GP. However, I'm aware that while the treatments outlined on this site may be available in the US, they might not be here in Blighty. So if there is anyone with experience of seeking help in the UK, I'd be particularly interested to hear any advice or recommendations you might have.
Big love to you all.
Screaming At the window,
Watch me die another day,
Hopeless situations,endless price I have to pay
Sanity now is beyond me , there's no choice
Diary of a madman,
walk the line again today
entries of confusion
Dear Diary, I'm here to stay
Manic depression befriends me
Hear his voice
Sanity now is beyond me
there's no choice
A sickened mind and spirit,
the mirror tells me lies
could I mistake myself for someone
who lives behind my eyes
Will HE escape my soul
or will He live in me
is HE trying to get out, or trying to enter me
Voices in the darkness,
scream away my mental health
can I, ask a question
to help me save me from myself
enemies fill up the pages
are they me
monday to sunday in stages
SET ME FREE !!!!!!
Ironically this is a song written by Ozzy Ozbourne,Randy Rhoades and Robert Daisley and Lee Kerslake. I can't speak for us all, but it sure sounds like me when I'm in cycle. Do ya think... maybe...
Just when I thought I was going completely out of my mind, last night, after having CH's, on an off, for the past 21 years, I find your site. It really is good to know there is a place to go to converse with sufferers, especially in the middle of the night when your having what I call "episodes in PAIN". Do you have any funny hats or t-shirts?
John
I am new here, but not to the pain of Cluster headaches. Also, I hope not to frighten those who may just now be experiencing them either. I am now in my 50's, and they have changed. They first started around when I was 18/19 years old. I have submitted myself to varius medical exams, and tried just about everything that they have ever come up with. Nothing ever seemed to stop them. In the mid 80's, they seemed even more harsher, and I made several trips to the ER to treat the pain. Now, in the 90's, they finally seem to be subsiding, but not entirely. They used to hit just about every 12 to 18 months, run for about three months, then strangely disappear. Since the 90's, they have not followed that schedule, and now, they seem to have an interval of about two to three years, and do not last more than from 2 to 4 weeks. But for me, that is still a great relief from before. One thing that I have found, that really does help, along with whatever pain meds I have, is to focus on a word, that helps to put me at more ease. Rather than thinking about the pain, I use the word, "FLOATING". May sound kind of silly, but it does seem to work "for me". If the migraine hits while I am sleeping, I am in trouble, as it will not be too shortened by any medication, and the word does not seem to work well then either, another does, but I can't place that one here.
At least now, the medical world takes this more seriously, and others in our work world, know more about it than they did before. Medical advances continue to help those that respond to different meds. Tomorrow, I will be seeing my doctor, and will be asking about the depacote. One thing that I notice with my own, is that I MUST reduce my level of tension/stress, if I am to get anything to work. That's where that one little word comes in, "floating". But I still close myself off in a dark room, that is cool or with an ice pack at least. Sometimes, within minutes, it is over, other times, maybe an hour or two. It is also not too convenient when my wife and I go out dancing on Saturday nights either.
Hi fellow sufferers. It has been 10 years since I have not had a CH betweek 1AM and 6AM. I'm keeping some pharmacies in business. Also tried acupuncture, chiropractic, holistics, yoga, tai chai. Just now starting prednisone. Wonder if it will work? At this point I'm ready to sell the farm....skylark
this is unbeleivable .What is wrong with all of us?I go over it in my head why is this happening to me?But it's not just me its all of you too.Im so sorry for your pain.But I'm happy I have found you.I have so many questions.Why don't any of these Dr.seem to know nothing? Cat scans,mri,glaucoma tests & nothing shows up.I have only tried predisone (on it now) and want off.I feel fat& mean.
I pray when I go off of it on Friday there will be no more pain because I dont think I can take it!!!!!!!!!!!!!!!!!!!
I had clusters 20 years ago. They were bad. My doctor put me on blood pressure medication. Recently I put my life in order and lost over 100lbs. I reached the point where I could leave the BP meds. Within 30 day the clusters returned with a vengence. They were hitting 3 ro 4 times a week and lasting 8 to 10 hours at a clip. The other effect was a total loss of color in my vision. Not only was I in agony but I was trapped in a black and white world. "Dog vision" I called it. After 4 months and a couple of MRIs we decided to go back on the BP meds even though I didn't need them. The clusters are now down to once a month. I get a little dizzy now and then from the BP meds but I'll take that over pacing the floor and trying to convince God to let me live, anyday! Good luck to all.
31 year old male trying to stay sane while enduring my third bout of CH's. It's been almost two years since the last episode. My God, I forgot how bad the pain is. My only comfort lies in knowing that I am not alone. The isolation is setting in and I am afraid to leave home without a portable O2 tank. So far I am two weeks into the cycle and am taking O2, Verapamil, Steroids and Lortab. Ha! I don't think even morphine could work on this pain! I am sure some of you have have experienced the wonderful trip to the ER and were referred to as "headache in exam 2". Gald to know I am not alone! What a blessing to find this wonderful resource!
I am back at this site for a second time... I am a 36 yr old female who had a open head injury at age 11 my clusters started shortly after as episodic and have been chronic for almost 15 months. I have been on so many medicines I couldn't name them all but nothing seems to give relief all the time, I will try anything at least twice for good measure is there anyone here who has had similar history. Please reply soon today I feel as if I am running out of hope.
Such a wonderful, informative site. I will be back!!
hi fellow clusterheads, i've been suffering from clusters for about three and a half years now, and this has been my worst season yet. so far i've tried verapamil which only works for maybe 2 or 3days then its back to the monster,i have only just now heard of other meds so i haven't tried them yet, need to save a bit more cash so i can see a neuro, i did use prednisone 20mg tabs, but my doc said i could only take the steroid for 1 week it seemed t help some but when i stopped i was right back to square one. i was hoping to make some noise about these clusters by bringing our stories to the media. maybe someone in the pharmacutical world will here us. thanks so much for this oulet it sure helps to know i am not alone
I am new on the computer so forgive my mistakes. I have had clusters for as long or longer than I can or wish to remember. They started at about the age of puberty and have continued on for the next 25+ years. Luckely mine come around every 1 and a half to 3 years.I have been cluster free now for 3 years. It is the longest I have ever gone. I hope they can stay away. When I am in my cycle I go on O2 and verapamil, and also a steroid burst to break the cycle. O2 works wonders and will stop a CH if taken in time. I am just hoping that they stay away and I am growing out of them. HA HA. Thanks for this site.
Hey there from Boise, ID...it's not all Potatoes here, you know! Just recently graduated from episiodal to chronic and I'm trying to figure out how to hold a steady job and pay for all of my ER visits...lucky me...if you have any ideas...or know of any government plans....please let me know. :)
Hey everyone. I'm episodic--8 weeks or so at the end of summer every year. I've had CH's for about 10 years. Officially diagnosed as "clusterf***ed" since 1995. I'm very excited to have found this website--it's a beautiful thing. Big fat thanks to DJ and to all who contribute!
after six month, i thought it's over.... in the night before the first rain this year, as allways, when the fall season begins, the CH seasone begins as well.....
AAAAAAAAAAAAAAAAAAAAAAAA i had enough !!!!!!!!!!!!!!!!
there is a god.the clusterhead god.somebody help us please.we want our life back.can you help us please?
I am still new to this website but are suffering just like the rest of you.
I have been heartily sickened to find out how many other poor folk suffer this torment. Some a lot worse than me, but it also had me crying with sentiment at knowing I am not alone. Thank you DJ for this web site. I will be eternally grateful.
My first cluster was in 1988. I only heard the term “cluster headache” 2 years ago. Then had my longest remission but they came back last month and it is just finishing now. I hope! I just managed to get referred to a Neurologist (too late to get any new medication for this cluster) he told me to check the Internet. I’ll thank him too when I next see him.
I was given “Prednisolone” not “Prednisone” by my doc. Noticed everyone else talking about Prednisone? What is the difference? Is there any? A bit worried I may have been taking the wrong thing. Any Pharmacists out there? Please e-mail me! Yatesdenis@hotmail.com
I am a sufferer. Please help me.
If you have taken any ergotamine tartrate for this condition cease it immediately. Get an Echocardiogram as it will have the same effect on your heart as Phen-Fen did to dieters. I have a hole in my Aortic Valve that regurges blood into my Left Ventricle. My life is cut by several years because of the fact that Cluster Headaches is not a problem that "Society" should be aware of. "Take your medicine and so what if it screws up your heart valves", Advice of drug companies. Do you know that there are people out there who can't control their weight so they rely on medication and become millionaires for it. They used a similar drug Phen-Fen which does the exact same thing that cafergot did to my heart. I hate the fact that cosmetic appearances on a persons body gets more sympathy from our judicial system than someone who suffers from pain.
I took Cafergot medication that ended up giving me a hole and a calcification on my aortic valve. If any of you have used any type of ergotamine tartrate medication get an echocardiogram as soon as possible. It does the same thing to your heart that the diet drug Phen-fen did to dieters. Is it fair that they took it to lose weight and get millions but we took a similar drug for the most horrific pain imaginiable and we get more continous pain with no releif because Cafergot was pulled
I've signed the guestbook before as an extreme CH sufferer. I've been in remission for about a year now, and despite an occassional "auora", I have had zero cluster headaches. That is after 15 years of suffering! Absolutely nothing in my life has changed, with the exception of one thing. I know it's illegal and everyone hates me for it, but I am a peace-loving pot smoker who just happened to change from one potency to another. The "pungent" stronger stuff seemed to bring on CH's and keep them in a steady cycle. But the lower grade does not seem to have the same affect. This merely indicates to me that it is sinus related like I suspected all along. Non-smokers can't relate of course, but maybe it all ties in to allergies that are unknown to most physicians. After years at the doctors, the only relief I could find was self-prescribed over-the-counter Sudafed for sinuses. Other than that, the only other conclusion is that I have outgrown them. (you would think that I would have outgrown other things since I'm 37 yrs old, but I know in my heart that the greater evil is alcohol abuse and I've successfully abstained from it, which was also a triggering agent). Take from this what you will. It's just that most people are probably afraid to admit to smoking pot. I am too, but if it helps the doctors find a solution, I'll tell you anything you want to know!! PEACE, LOVE, and a CURE.
I just started taking predizone a week ago for cluster headaches. Problem is I am still having 3-4 attacks a day. I have an MRI on Monday so they can tell me it is nothing but cluster headaches. The medicine makes me hungry, all I do is eat, drink water and get mad at everyone and everything. Irritable isn't the right word! Nice to know I am not alone, when I tell people what is wrong they look at me like I made this up. Please tell me there is relief, I can't stand the pain!
Thanks for listening and good luck to everyone out there!
Where do I start ? I have had migraines for 25 yrs. or so, I thought they were bad. For the past 4 weeks I have been
cursed with cluster headaches. I seen a neurologist yesterday, and he gave me, Inderal 40 mg., and Imitrex nasal spray. The MRI will comes next week.
In the begining I thought I would just die from the pain and at times I wanted to. I don't think that anyone can possible understand how severe the pain is !!! (unless you have them) The pain scares me, and I have a pretty hign tolerance to pain. At 44 yrs.old and female, the Dr. says it's kind of rare to get clusters. When will they stop ???
They have taken over my life, I have around 3 a day, and then my head hurts the rest of the day and night.
I am never pain free, I hope this medication helps, I start
it today !
Kathy Williams
remembering the first one.
ah youth and innocence. 30 + years ago, at the tender age of nineteen, I knocked on a neighbors door for help. I had a throbbing pain on the right side of my skull and a river of tears flowed from my eye. Both the husband and wife peered into my eye for several minutes, and not finding the offending lash or partical, shrugged compassionately and sent me and my misery home.
I pray that all the other cluster heads get diagnosed faster than I did, It's Hell trying to get allergy meds to wipe out a cluster headache impossible but after eighteen years I'm finally on the right track. Hope the pain stops soon for all of us now and all that come.
Just discovered this site - it's fantastic....I thought I was going mad - banging my head with my fists at 4am isn't my idea of fun!!!...I started my duel with the monster last year and he has returned again this year. I try and fight it without any medication, and I learnt to avoid alcohol at all costs during the bout as it brings a CH on very quickly...The pain is so debilitating I know what you all go through!!! I find that a very good massage of the neck just beneath the skull and on the temple affected can help delay an attack or even prevent one...this doesn't work that often though....has anyone out there tried other drug free remedies??
Have been here before under diff screen name.Is an excellent site! Kudos to person responsible for this site. I am sched for another Neuro visit. Hope they have some new insites as the imitrex, verapamil & oxygen not working anymore (bad night last night). Hang in there all my fellow "Cluster Heads". Wish you did not belong to this terrible group (but glad you have this outreach). Maybe talk to you on-line or leave me a message on message board if you like. C-ya, :-} reg1fan
I have had them for over 25 years...here is my advice.
One good product is feverfew (herbal) but is prophylactic (preventative rather than curative0...need to start a few weeks before your cluster if it is predicatble. For me, some weeks before autumn ("fall")....can reduce frequency + severity.
For pain relief, I like "Ibuprofen" (such brands as Nurofen, ACT 3) ..ask your druggist/pharmacist.
Better for pain than paracetamol, etc, for me, anyway.
Essential oils, such as grapefruit can ease the head tensions a bit (rub on temples, neck, carefully with some), try with pain killers..
peppermint oil inhaled can help with nausea.
One very promising item is Melatonin as a prophylactic. I have had some years pain free with it.
Try anything from half to six mg.....I often start with, say, 3mg and then get to half mg.
Some say that wrong doses may make pain worse, it is WORTHWHILE trying to fine tune your dose.
Only useful taken about an hour before sleep...not a pain reliever!!!
I thoroughly believe that the cause of migraine/cluster is essentially hormonal...any endocrinologists want to email me?
The Melatonin is a body clock hormone, and I am sure that my clusters are a disorder of the hormones.
The English reports found hypothalamus (I think that is the right organ) enlargement in migraine sufferers.
If someone is willing to hop onto the bandwagon, I'm sure that hormonal regulation will cure this ill, not pain relievers!
Immigran is good, the injectable form can cause heart failure: I prefer the oral, even if slower...but very expensive.
Feel free to email me about Melatonin: I am keen to hear your results.
I don't really suffer from "cluster" headaches --- migraines, tho sometimes my migraines do come in a cluster.
My husband has had CH since he was 20, he is now 38, has tried most of the
meds out there, only predisone helped prevent, amerge helps
shorten attacks. I hope it is ok that I have entered the guest
book even though I am not the actual sufferer. I knew my husband before he
started CH and know what it has done to his life and I would
do almost anything to end his pain. The one thing he sometimes asks me to
do I won't do.
I am trying to find different ways to help my husband who is suffering from cluster headaches. We have been married less then a year and i have not experienced the headaches at this time. My husband is just starting to feel a heachache approaching and all he takes is prednisone give by the doctor. What else can he do? With a new child i am afraid of what to expect? Any advice would be appreciated.
My name is Sue and I am 35 years old. It took my GP (he thought I had migraines) about two months to decide to send me to a neuro. I used to use Fiornal-that stopped working. Then my GP gave me Amerge to try to abort them - Not! Then Zomig - No! Then he put me on Inderal, helped for about two days and then headaches came back again (I took it for over one month). Then I went to see a neuro who said that it was not migraines, it was cluster headaches. I only get pain on the right side of my head, right behind my eye. My eye waters, sometimes when I wake up in the morning the size of my eye opening is half the size of the other eye. I have been in this pattern for about three months now. Headaches every single day (averaging about 5-8 a day). When they get really bad it feels like someone is sticking a knife in my eye. I am currently on Verapamil as a preventative, have been on it for 15 days and hoped this would do the trick. I am using Vicodin to kill the pain since nothing I use to abort it works. I am going to see my neuro in about six days and I want to try something else to use to abort, have tried Amerge, Zomig, Midrin, Imitrex (nasal), Maxalt - none worked. I am going to ask him about using oxygen, Ergotamine (inhaled) and Lidocaine (drops for the nose). If anyone knows of something else I could try please let me know. I think I need to be on the Verapamil longer to see if it works, but I need something to abort these headaches!! It is basically ruining my life. I don't want to do anything. My neuro had also suggested Elavil as a preventative, but said it would make me drowsy all of the time. I might just have to try it if the Verapamil doesn't work. Please write if you have any suggestions. Thank you!
I was diagnosed with CH 9 years ago.
All they had for treatment was O2, Nueral Blocks (Which didn't work and Finally Zoloft to Knock n=me out after 45 minutes of pure hell.
Went into a 7 year remission.
They came back last week.
I found your site, and Now have the knowledge to get the medicines that helps.
It's been one day without one....
I have had cluster headaches since I was 16, I am now 20. Most of my friends could not relate to my pain I'm glad to know there are people that understand what i go though.
I am glad your here
Kelli
I have had cluster headaches since I was 16, I am now 20. Most of my friends could not relate to my pain I'm glad to know there are people that understand what i go though.
I am glad your here
Kelli
Hi, i was just diagnosed today with cluster headaches. I am 31yrs old and 6 months pregnant. It has been going on for 1 week now. It hits me when i am sleeping, I awake in the middle of the night with severe pain, undescribable!!! The neurologist gave me a rx for oxygen i hope it works. Tis message board made me feel so much better!! Thank-you.
Kerrie
Hello fellow clusterheads, I am so glad I finally found a site where people can understand. I have been a sufferer for 22 years and look forward to chatting with you BCNU : )
Great site.I'm a chronic migraine cluster headache disorder victim for the past 11 years.mine started with a fever of 104* and hospitalization of 1 week. Ever since I've had the beast.there is no relief EVER!! I've been through the whole routine,from DHE45 to verapamil. nothing works!!!! for the past two years I've been taking buprenex/buprenorphine hydrocloride inj. they stop the painbut is a very heavy narcotic. I've had trigeminal,occipital nerve blocks,trigger point inj's to no avail! It's good to know that there are others that understand the pain. It's hard for people that has'nt been through it to understand !!! Thank GOD for my family. thats the only thing that keeps me going !!! I've been to the point of wanting to end it all and then think of my wife and children. there is relief out there somewhere so don't give up! there has to be!! It is very hard on family . this i do know ,but if you stick together and try to understand both sides you will succeed!! TOGETHER, we will all beat the beast!! THANKS FOR THIS SITE. SINCERLY,KEITH
Hi - My son age 22 has been suffering from cluster headaches for a long time now. They come and go. Usually come. He can't work, he can't eat, he just lies in bed til they go away. He takes Imitrix (sp) but it makes him sick. He takes 800 mgs of Motrin (will help after awhil) but I've been reading about Zomig. Has anyone tried it? Thanks
This is a great site. I've put in fav places for future.
I am 28 yrs old a SAHM of three, and this is all new to me. Just started the acknowledgement of these headaches and it scares me. I feel so useless when the come, it just started this is my fifth day, never heard of these types of headaches and I'm trying to get a much info. on it as I can. Typing the the computer sure isn't helping but I'm desperate for suggestions so I can get back to life!Thanks for any help or suggestions.
I've had chronic clusters for 16 years (now 39). Taking Lithium, verapamil, cafergot. They work most of the time. When a cluster does sneek through, 2 Aleve work real quick to abort the pain.. My n-surgeon says that I will probably have them until my mid to late fifties.
I've never met anyone who suffers from this terrible illness. It's nice to meet others who understand...
Just looking for answers and solutions to my headaches (cluster)
You're doing good work with this web site - thanks! I've had these headaches for 15 years off and on and didn't know what they were. I'd heard the term cluster headache but didn't know whether my headaches fit the description untill visiting your site.
I'm female, 26yrs old, and have suffered with seasonal clusters for about 6 years now. So far, i have been lucky they do not last longer than 1 month each year. I also have severe depression, I'm not sure if chemical imbalances play a part in clusters, but my disease is hereditary. My mother is manic depressive, and grandmother had shock treatment, which is now a degenerative brain disease. If anyone else has these experiences, I'd like to hear them. Thanks, and THANK YOU GOD for this site!!!!!!
UpAt3am,7am,9am-Melissa
I have had clusters for 5 years, since I was 20. They started as seasonal attacks but the past two years I am lucky if I go a week without one. I haven't seen my Doc in a few months cause I am frustrated that nothing has worked. I might give him a visit now that I have some new info. Thank you for having a well built and well informed site.
it is 3am, quess why i am up and not asleep?
My husband has suffered with Cluster Headaches since he was seventeen,he turns 30 tomorrow; He had a really bad one last night lasted around four hours. He uses oxygen for his but even sometimes that doesnt work, I love him dearly and it hurts and scares me to see someone go through that much pain, I would gladly take some of it on myself. Do you have any other suggestions besides the oxygen to help; As you all know over the counter pain relievers don't work
Even though it's paradoxical, I know that I'll sleep better tonight after reading the information on this site. I had to endure CT, MRI/MRA, EEG, Spinal Puncture, blood tests - and, had I seen this site I could have said to the doc: THAT'S IT! Thanks for the piece of mind (as it were) :)
i have had this for three years and the docs do is give me a repeat of the medicine each time.but this is not helpping and i find it hard to work now,i take verapmil 40mg 2 4times a day can anybody help with any ideas
as i'm typing at work i'm currently going through an attack. it's nice to know that i'm not the only one going through this(and not just me, my family also). one thing i would like to say is that i'm 24 and was truly diagnosed 2 years ago with my first attack when i was 14. the first time i went to the emergency room (14) the doctors were treating it as a stroke!!! i've been living with this for quite some time now and i currently take indocin and calan for preventative and imitrex injections and nasals for severe attacks.
Hello all! Finally some people how know what i feel. I've been suffering for about 10 year, I'm 32. I used to be able to take Excederin but this year pain is unbearable and had to get injections as well as Verapamil and Predmisone. Does anybody out there know about these? Are they effective? Drop me a line i'd like to know.
I have had cluster headaches for years. Going thru a bad session now. I'm going to try oxygen today. Any help out
there on using the oxygen?
tried this site to discover what kind of headache i suffer from. Even though it doesn't sound like cluster headaches this site has been great in that it has helped to not only eliminate one type of pain but guide me towards other possibilities.
I suffer from cluster headaches and have for about 20 years.
I get them about every 1 1/2 to 2 years. When they come, I get one every night for about 6 weeks. I take Ergotamine as a blocker and Propoxyphene & Acetaminophen for pain. Sometimes the Ergotamine works, however when I get the headache, I have not found anything that really stops the pain.
Thank you for having this site! I am still not sure that my daughter has cluster headaches, but your site has been the most helpful to us. Thank you again!!!!
i've been living with clusters for 25 years.this year has been the only time i have actually talked with someone else who suffers the same.it is refreshing to find this web connection and to learn more about this hell we cluster heads go through.it's late now,i tried to sleep earlier but only got 30 minutes before the pain came again and i've been up since 2:30 this morning.i keep trying different drugs,but nothing seems to work 100%.thinking of trying accupuncture.any comments would be welcome.later
i am a cluster headache sufferer and i am pain free for about 6 months, im almost afraid to talk about it, but happy that there is someone out there who understands.i have been suffering for about 20 years or more. its supposely a mans illness and all i can say is why me.
Hi everyone, this is my first here, I have read a lot of interesting things, especially things that I can relate to very closely ie: friends, co-workers, employers and even doctors, who do not understand our situation. How can you describe an "undescrible" pain to someone who has never experienced our pain. I have suffered with CH for over 20 years and have only, actually met 2 other people who suffer from CH. I am about 2 weeks into a vicious cycle and look forward to the day they will stop. It is comforting to find that there are so many other people out there who really know and understand this pain. Maybe one day there will be a permanent cure. I wish everyone many pain free days.
I first suffered a cluster headache when I was 56. I am now 65 and they come back every 2/3 years for about 5 weeks when I get one a day. Does anyone know if there is an age when then go away for good.
Doctors told me that I should get my eyes checked ! Most told me to drink more water, 'cos they thought I was dehydrated. It took 7 years before a doctor would take me seriously when I told her I've peen having excruciatingly painful head-aches like clockwork every august. Your site is fantastic ! I've learned more in the hour I've been here then I ever thought possable. Its the beginning of september and the pain is driving me mad, but I have hope that some of the medication I've been reading about will bring me some relief. If not, I'll continue to drum a tune on the wall with my head !
When I happened upon this site, I cried. Sometimes I feel so alone. I have dealt with CH for 30+ years and only those closest to me know. I am smack in the middle of what I call "my season" now and am tired, depressed, and feeling defeated. Thank God for Imitrex.
Wonderful site, I will be visiting frequently.
I have had Cluster Headaches since roughly 1984. I will be 34 this month and I have lived with my headaches off and on for sixteen years now. Your site is very helpful. I am currently in a cycle and have been suffering from my headaches for about four days now, just one more day for this cycle and I will be done. Since I am comming up on my last day I should only have one headache tomorrow. My cycles come every 2-3 months and last for exactly 5 days, having 3-5 headaches each day lasting for at least 45 minutes up to 2 hours. I finally got some medication from my doctor although the name of the prescription eludes me at this time. I usually take Advil, the past two days I have been taking Advil Migraine and that seems to be numbing the pain pretty well. I have always relied on home remedies. Hot wash cloth, drink a coke for the carbination to clear my sinus (sounds silly I know, but it helps) and I make my self sneez to make my nose run so again my sinus will open up. Again I know it sounds silly but when I am in so much pain I will try just about anything. I don't know what brings it on, although I always know when one is comming on. I don't smoke, don't drink (One beer every once in a blue moon) I am in good health. Infact I am doing a Triathlon at the end of September and early October. Sometimes my work outs help by clearing up my sinus' and getting me heated up and moving, however if I push to hard and come back fatigued it can trigger it and make it all that much worse. It is difficult for my family. My wife is very loving and supportive. I actually tried to hide it from her when we first dated because I didn't want to discourage her from dating me. But she knew something was wrong, so I finally fessed up. She has always helped me through each cycle. I've never known anyone to be more helpful, patient, and supportive. My goal before we had children was to get help so this wouldn't effect our family. No such luck yet. I am very lucky that I have two great son's, and my wife will always help me get some extra rest when I have an attack. Again, Thank you so much for the information and support on your site. You are truly making a difference in peoples lifes.
Sincerly,
Karim
man my day is made. after 28 years i have finally found a place where i am understood and understand. i did 25 years in the navy and neer saw the same dr more than twice. even then i would sometimes have to lie about the CH's being gone so i could get that primo set of orders or promotion. i've been told everything from if it was serious i'd be dead to lets just try this and see what happens. ONE dr many years ago told me he didn't know what to do, but he would stick with me as long as he could. he shoved more different things down my throat and tried everything that he could find. he really tried. then he got transferred and again i fought the demon by myself. i've never reached 10 on kip's scale, but it has been mighty close. until your third wife tells you yoou need to go see a dr you don't really understand that NO ONE else understands. i used to listen to my 5 year old son asking his mom if daddy was having another throw-up headache? this site has done more for my CH than all of the drs and things i have tried in tried in the last 28 years. I have even felt guilty thst i must hve done something wrong and was just being punished. i guess when the demon is with you, you think many strange things. but if you haven't been there you wouldn't know. it's great to have a place to come... to know that the people with you "have been there .. done that .. and don't have the t-shirt. sorry i have gone on so long but this is really a place that i can feel comfortable talking for the the first time. everyone else either pities me or thinks i'm nuts.
thanks
i am currently free of the monster right now, but i do dread going to sleep tonite because i know he'll be back to see me.i'm starting the water treatment tonite, and i'll let you know if its working. thanks for this page.if there is anything i can do to help others dealing with the MONSTER,
please feel free to contact me at this address
I was just (finally) diagnosed with CH. Am allergic to Imitrex, Maxalt - anything in the "triptan" family. Doctor is suggesting DHE45. Can anyone give me any information on this treatment? Is it dangerous? Please let me know. Thanks and God Bless
I'm 33 and have had cluster headaches since High School. I often left school early to go home and cry myself to sleep hoping the pain would go away.
I have found SOME help in over-the-counter migraine meds. If they have Acetaminophen, Asprine and Caffeine combinations, then the pain normally goes away in about 1/2 hour, although sometimes I have to take up to 4 tablets before I start to feel better.
I carry the stuff with me in my car and keep large bottles at home and work.
I hope my finding helps others with this horrible condition!
go to your bed room....turn off the light...open the window
start to play with your (dick/pussy) i mean {Masturbation}
sometimes it helps also to keep an ice bag over your head when you are doing that..that is used to be my way to stop the pain most of the time . [too much Humidity and too much smoking is really help to make the attack come back.]
I'm a newby. On my first cycle. it started about 3 weeks ago
when I was in Mexico. It was my chiropractor that diagnosed my problem and got me into a nuerologist. before him I tried ice, heat, and any legal drug I could get my hands on. I've been on prednazone a week, along with a muscle relaxer. I've traveled the Imatrex nasal road once and didn't like it so well. I stumbled on this sight and read something that has helped a bunch. It talked about using vigorous excercise. Not the thing a fat 42 year old wants to hear, but I tried it, and I'm getting relief. I spend 15 minutes on a treadmill. (had it gathering dust in the corner at home) and the pain leaves before i'm off the thing. I thought i would die the first time, but i,m 6 for 6 whipping the pain. its 12:30 and I just finished running, I thought i'd add my find to the list. When i used the drugs I felt so whipped, It was nice being able to do something myself to beat down this beast. Who knows maybe I'll get skinny. I haven't given up on my chiro yet either. he seems to be helping me prevent them from happening. I'll post later if I get some good results
I have just recently came across your site by accident and the little I have had time to read I have found interesting and look forward to reading more.
My name is Patti and I had my first cluster @ 23. It's been 8 years now.
Imitrix injections work to relieve the pain, but the ins. co. won't let
me have enough, as we all know well. My cycles usually start in feb., and last
anywhere from 4-8 months, usually 3 times daily, mostly in the evening. I've had
them wake me up out of a deep sleep, that sucks. My mom and sisters get migraines.
My boyfriend is very supportive, but I know it hurts him to not be able to do anything.
They diagnosed me with clusters w/ migraine side affects. I get nausea, light sensitive,
and noise sensitive. Thank you for this site. It helps to know other people know our
private agony.
Just thought I would let others know. I suffered (note suffered) from clusters from the age of 15 til now 50. Most were the Bang (head bangers) (super painful) type. In October of last year, my blood pressure went up a few points from my last Dr. visit. He prescribed a drug known as Hyzaar that is a normal blood press. medicine with a diuretic. The day after I started that drug I noticed no headaches and to this date I have had only 3 very minor headaches easily handles w/ aspirin and no instances of any migraine or clusters. An interesting side effect is that I can now have a small drink which always triggered a cluster or bananas which have also triggered them. While at first I was a little tired, that went away and what a blessing to not have to carry emergency sources of Imitrax or Vicadine or fiornal. Not sure the mfg. even knows of this by- product and my doctor is amazed. And of course my blood press. from age 15 to 49 was always great and then I still had the clusters, but now its great.
G'day just found your site tonight sunday 3rd Sept looks great however I've got an attack coming so must go
Regards
Matt
I suffer from cluster headache and want to see if this website could be of interest for me
Caught your site a week or so ago and don't know if I left a message. Believe me, I know the horror of these things but I've not had attacks in several years. I suspect my getting into my late forties, and some other medications I take for seizures has had something to do with it. I once descirbed the pain as bad enough to want to kick the Dachshund through the wall. Propranolol was the drug which seemed to do me the most good at the time and I still go nowhere with out it, although I don't use it. Reading all your messages brought tears to my eyes and I wish you all the best and an end to this nightmare, Charlie Strand
Hi, For a year I had suffer from headaches that only God would understand. My pain change my life completely. I went to a chiropractor for back pain and she twist my neck and from that second my headaches are with me and my family. I am 30 years old and has been tru spinal tabs, blood patch in my back, nerve blocks three times a week and even a nerve stimulator implanted in my head with a receiver and my headaches are driving me crazy, sometimes I feel that I can't live anymore or don't want to anymore, I am going to a psyquiatry because I can't sleep because my headaches feel like there is nothing more in this world but them. I am in so much pain that I just don't know how to explained it. I hope somebody out there doesn't feel so lonely like I do.
Hello, my son has been diagnosed with cluster headaches and has been suffering since the beginning of summer. He has as much as 7 a day, everyday. The most painful thing of all, is that he is only 2 years old. My journey with him so far has been terrifying, but I am hopeful that I have found some clues with alternative medicine. It is called NAET(nambudripad allergy elimination test). I have never been one to seek out alternative therapies, but my husband and I had no other choices. Something is happening, and I'm hoping that he's just not at the end of a cycle. I will keep posting...
Mine started when I was 17 and I'm now 52. They start about 1 am and last about 2 hours on average with anything from 1 to 3 more during the rest of the day. When I was about 33 it was finally diagnosed as cluster and I was so happy ( if that's the right word ) that at least it had a name. Anyway Thank you for this web site Because now I don't have too feel alone anymore.
It has taken me 40 years of pain and being mis-diagnosed for my headaches. I am a "cluster head" now confirmed. It was this web-site that gave me, and my physician, the revelation. Now I can do more about it......thank god.
Hello everybody
I´m just another Clusterhead, who now got connected to the Internet and I´m looking forward to sharing Informations with you. I probably have a tip for those of you, who get an increasing pulse a few minutes after an attack starts. In my case it works well together with Dihydergot and Imitrex Nasal. You take the medicine, watch your pulse and after 8-10 minutes you do as many pushups you can. Your pulse should have a rate of more then 100. In my case this procedure is working well in about 75% of my attacks, and I had 12 years until now to find it out.
Less pain to all of you Günter
i'm the wife of a clusterhead, his pain is unbearable and i'm at a loss, i don't know what to do anymore. we've tried so many things, even oxygen. it helps for a while then, it doesn't. his cycles were like clockwork for four years, they began in november and ended in april. last year, the cycle didn't end. the headaches continued through the summer. this year, the same thing is happening. there's doesn't seem to be any relief in sight. i no longer know what to tell or ask the doctors, what do we try next.?
hello people,my cluster headaches started in calafornia shortly after a severe drunken stewper which then followed by a motorcycle accident.i was uncontious for two weeks not to mention the several broken bones i had acquired.about a month went by when i first experenced my first cluster headache.that happened in 1982.for years after going to specialist,i have just recently been diagnosed with clusterheadaches.sleep is a thing of the past with me.the pain for me is behind my left eye,ocasionaly with sweating and muscle weakness. also my left nostrile closes up.i must tell you i have experienced pain before but nothing like what i go threw every time which by the way is on a regular bases.i can only at this point ask my god to have pity on me and to spair me from this demon that plages me.
Just discovered your website after suffering from "commom" migraines or years. As I transition into my 40's I seem to be having more cluster-typr headaches which are freaking me out because my usual coping mechaisms don't sem to work!
I am the wife of a CH sufferer. My husband has had no luck with the treatment programs recommended - I'm doing all I can to learn more about how I can help him. I have learned so much - God Bless every one of you. I pray every day medicine will find a way to relieve you all of this horrible pain PERMANENTLY!
I am not a sufferer, but my husband is. This whole thing just started for us. The first cluster was a year ago and now they have come back. He has tried everything but nothing has worked so far. It sounds like there are lots more ways of taking the meds than we thought. He has an oxegen machine which helps but I would like some advice on where to start in trying to ease the pain. Thanks for listening!
Carrie Murad
I just finished filling out the meds survey. Afterwhich, I read the so-far collected data. My conclusion . . . WAKE UP PEOPLE !!!! I have danced with the Beast for over 24 years. After 7 doctors, 4 Neuro's , and a partrige in a pear tree, I can tell you that your Doctor MUST be an extension of you. He/She/They don't know the Inf***ingcredible pain WE know ( all too well !!!) If you arent getting good ADVICE, your NOT getting through. I read,read,read EVERYTHING I can get my hands on that remotely resembles CH info. I told my Dr. about Imitrex and Stadol 2(TWO) YEARS before they were available in Canada. All you (snicker snicker)CH Newbies (or CHN's) need to DEMAND that you get every s i n g l e possible drug available to you to try. I REFUSE to allow the Med Establishment to sweep me away. I have fought with Dr.'s in the ER ( was even escorted out by security once - I APPARENTLY got obnoxious with the arrogant S.O.B. Dr. - in THAT kind of pain - you think ???) because the asshole in charge "didn't believe that I could be in that much pain" and he was going to get me a breathmint when Demerol or CPZ (chlorpromazine) -an anti-psycotic(it works too!!) was the order of the day. I will not ever stop telling ANYONE that can hear my voice, what CH is REALLY all about. D O N ' T become complacent with your physician (or yourself) - remember YOU are seeking their ADVICE, opinion, whatever !
YOU must take charge and become involved in YOUR treatment .
The survey speaks VERY loudly - Y O U are NOT getting the respect and TREATMENT you DESERVE !!!!! As of 9:11 today (Sept. 1) the majority (it seems) haven't even tried the most basic of CH drugs - Ergotamine ( Wigraine,Cafergot)Most haven't used my elixer of Beastly Death - Imitrex (injectables and nasals work best for me - fastest too !!)
It saddens me greatly that as a species, we can take a heart from a dead body ( well basically dead) and implant it in a dying person and 20 days later they walk away. We can use telemetry to explore Mars (and other places too) BUT, we S T I L L cannot kill the Beast. Take charge of your pain, your life, your medical health !!!! YOU take the meds, get the nasty side-effects, A N D dance the herky-jerky. I'm lucky (?!!?!?!?!?!- OK )- my Dr. used to have severe migraine - so he can at least relate to my (our) plight. Over the 15 years of knowing me ( and knowing you ahh ahhhhhh)(sorry just got off a 10 hour night shift - getting loopy from lack of snooze)I have shown him that with cooperation, WE, will exercise SOME control over the Beast. I hope you all get the help you so deserve. I am coming off a cycle (FINALLY) After almost 2 months of 6-9 dances a day; Boy are my legs tired !! I have had 4 PFD so far. My Dr. says not to count my winnings yet ( I have been tricked before), but after a quarter century (!!!)better than 2/3rds my life, I know when the band stops playing that oh so familiar tune, packs up and moves on. (usually)
Peace to us all, and may those that aren't yet - get the help they desire and need.
InCrEaSe tHe PeAcE
I've had clusters for 10 years now and have become very educated on the stupid things. I have also found a great combination of meds as a daily treatment as well as a sure fire remedy to get rid of my clusters fast. I take 240 mil of verapimal and 100 mil of amitriptyline daily. When one gets past that, I suck on 10-15 liters of oxygen for 5-10 mins. This helps about 80% of the time. When that doesn't help I use the imitrex and that always gets rid of it. Good luck to all and please get a hold of me with any questions comments or news:) Jimm
I've had clusters for 10 years now. Please feel free to give my mail out to other sufferer's. I have become very educated on clusters and have found a very effective and quick treatment. Not to say it can help all, but I would be lost without it. 15 Litres of oxygen for 5 to 10 mins blows it out of my head about 80% of the time. When after 10 mins there is not noticeable improvment I use the imitrex. It has never failed me. I usualy only get one a day tho, and it is in the late morning early afternoon. Hope to hear from ya...... Jimm
|