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Below are the guestbook entries from January - June 2003. 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 47yrs. old and have had terrible headaches since I was 8yrs. old. When I was 20 yrs. old I was finally diagnosed with miganes.The older I get the more severe the pain and the longer the duration of the headaches.Two years ago ,it was 11 weeks long. The most intense pain ever. I`ve got them now as I`m writing this (although the throbbing has eased up some). Several hours ago I thought I was going to Die. I can`t take it anymore!! Help me please, RobertRobert Venturini <RVenturini@webtv.net> Cape May Court House, NJ USA Friday, June 27, 2003 at 20:59:21 (EDT)
Partner of cluster headache sufferer
Please be sure you have cluster Headaches. My daughter had headaches all the time and it turned out after talking to several doctors that she had an Arnold Chiarri malformation which is a malformation in the back of the head leaning on the skull. If a person has an MRI and it shows up that is probably the cause of your headache. Some Nuroligists do not think this is a cause for headaches but in actuality it does. So make sure if you get headaches real often this is not the cause. When you have the MRI ask the nurelogist to show you where it would be if you did have a Arnold Chirarri Malformation. Dr. Soni in Richmond Virginia operated on my daughter at age 19 and was very successful. She was a differant person after surgery. Don't let a doctor tell you it doesn't cause headaches!!!!
I started having CH's at 21. Diagnosed at 22. Suffered for about 15 years with episodic CH's. During my mid 30's my blood pressure started creeping up and I was put on Inderal (Propanalol is generic form). Delighted to say that I have not had a cluster headache since I started propanalol. It's a beta blocker, not expensive - though I do have to take it every day. I read everyone's reports and thought I'd share this.
What a great website!! My father suffers from CH's and has for approximately 20 years. As he gets older (he's now 72), I worry about him more and more. This website is so informative. He's been to several doctors, but none have been much help. I don't know if anyone else has heard of this, but one doctor advised my father that hot peppers eaten raw helps CH's. He tried it and said that it helped somewhat, but the side-effects (obviously) after time were too much to bear. He's currently going through a bout right now. We leave for vacation in 3 weeks. I hope they're gone by then!! Thanks to everyone for your hard work on this website.
Help. This is hell!!
First, I want to thank DJ for putting this site up, for all of his hard work and dedication, and all of the heart that he puts into it. DJ, you have really done -- and are really doing -- a terrific job of running a website. You are doing far better as an amateur webmaster than many people do as a career. Way to go DJ!! THANK YOU, thank you, ThAnK YoU, Thank You, and bless you, so very much!!!
--- my girlfriend found this site for me, and it has helped alot. I hope anyone who reads this has a good day -- that is, a day with no "nazi torture headache".
--- say --- why don't we call it "nazi torture headache"? would that maybe help people glipse the idea of it? just a thought. Again, thank you DJ, so much.
I have had (after reading this site)CH for 6+ years and have visited the doctors more than I care to count and being treated as if I was crazy at first and then as if it was a regular migrane. My symptoms have always been the same. I get a headache that pretty much lasts for 2 or 3 MONTHS at a time then goes away for a couple weeks maybe if I am lucky a full month. Well the Dr's started saying I couldn't be having them that long and that I was imagining them then when I found a Dr that believed me he said he thought it was stress related. Well I went thru all the things that you guys see listed in here and tried alot of the meds in the list but I got so sick and tired of all the side effects and still having the headache that I have stopped taking the meds and am trying to just deal with it with my own form of meditation and my high level of pain tolerance. I have kip scale min 7 to mostly 9-10.
I am glad in a sorry way that there are others out there that know what I am going thru. I get the question all the time how do you work or how do you do anything with a headache. I answer the only answer I can which is what else am I going to do. Out of an average year I am headache free 3 months. I would love to have a job that will pay me a full year salary and give me 9 months of vacation. I haven't found that job yet still looking tho. Well enough babble just glad I found this site.
Have any of of you folks ever experienced this: I recently awoke during a nightmare with a #10 on the kip scale but didn't fully awake from the dream which seemed to be(in my half asleep brain) intertwined with the pain I was feeling. Either of the two by themselves is bad enough but combined was an indescribeable hell the likes of which I have never experienced in 15 years with CH. It felt like complete insanity coupled with pain only rivaled by massive bodily injury. The half asleep state lasted about 10 minutes. EXTREMELY peculiar. God bless you all!
Hello all I am a young sufferer of Cluster Headaches. Up until about a year ago I was under the impression that I just got really horrible migraines. I am very happy that I now understand what is actually happening. I would like to thank you for making this site it has helped me understand even more about my "headaches." I will be talking to you all again soon I am sure.
Sarah.
Hi, I'm Gareth from Leicester, England and I've been a ClusterHead since October '98 when I was 29. I was diagnosed as a Chronic CH sufferer in February this year.
Having never ever suffered a headache before (other than hangovers) I merely put them down to stress and changed my job 2 months after they started. No remission so I realised things were more complicated. On a trip to Amsterdam in 2001 I was going through a what I later learned was a really bad cluster and logged on in an internet Cafe to search for headache causes. Imagine my surprise to find a description of my suffering so accurate that I could have written it myself - I'd learned the term Cluster Headache. It took my Doc two years to send me to a consultant, during which time I'd tried giving up alcohol, coffee, dairy and yeast for 6 months. Finally he agreed and the diagosis was as I expected. We're now going down the list of drugs that I was so reluctant to try but what else can we do?
I live alone and have mainly suffered alone. Companionship would be nice how the hell do you start a relationship knowing what your going to put them through? During a recent holiday in Spain I frightened one of my best mates silly as he came back to the apartment to find me crying my eyes out on the balcony, curled up in a ball rocking like a madman. The most frustrating thing is that they want to help but all I can do is blubber that there's nothing neither they nor I can do until the pain subsides all on its own.
I must mention my long suffering cats who I would like to thank for always bein' there.
I saw on the front page a phrase that I've used often and emphasises the pain of CH's really well - "I wouldn't wish this on my worst enemy."
Glad I found the site - the why me? and what the hell did I do wrong to deserve this? questions feel a little less selfish knowing that I'm not alone.
bye for now.
I do not know what a cluster headache is and that is why I came here. I am 38yrs. old and I have been getting headaches everyday for sooo many years now that I can not remember when I did not get them. I am trying to find out what I can do to get rid of them. Doc's dod not know why so I thought you all would. Thanks, Kelle
I just found this site for the first time and haven't stopped crying for the last hour! For the first time in almost 15 years I do not feel insane or all alone in my suffering. I promise to make all of my loved ones read everything all of you have spent so much time and effort putting into this site. Thank You All So Much!!!!
Too all you sufferers out there "I feel your pain" LOL If you lean a little to the right, you know what i'm talking about.Clintons famous words. Ok, on with some help for some I hope. I've been prescribed every medication I've read about on this site. Have had these clusters now for 14 yrs. Only 1 medication has helped, and that is Imatrex. I hate to use it due to the side affects as all the other medications also have. But only when I'm in a bind. The best I've found is 100% oxygen. The mask is not quick enough so I use the nasal tube and suck the oxy through my mouth as deeply as I can and exhale just the same. Suck in as much as you can and exhale as much as you can. Most times the culprit only lasts 5 min. or so, but you gotta get it on the upswing. Once its full blown your on your own as to how long it will last. And to you who think it might be stress related, I was on high doses of Paxil and prozac at different times and the only thing that did for me was relax me and screw up my sex life, but still got the headaches. One thing I haven't tried is Margi's H2O treatment. What the hell, after all the drugs known to man hasn't worked I think I have to give margi's treatment a shot. I'll keep you posted if I can stay out of the bathroom long enough. Good luck to all and keep your head up. Smitty
I have had CH, (cronic) for over a year and a half. It started at the dentist. I have been to 5 differnt dentist, and begged them to pull my teeth, and no one would, said my teeth were fine. Been to 3 doctors, no help. 3 neuros and finally on the 4th was diagnosed with CH. I still want my teeth pulled, but no one will. Pure O2 helps at home. My CH use to be only in the evening or at night. But now they are coming more frequently and during all hours, even while I work. I have also been on prednisone which works while I am on it, but once I am though the CH come back with greater intensity. I take 1600 mg. of ibuprofen which sometimes helps during the day, Mind control helps on the minor ones. I have become increasingly depressed and tired. When will this end.
Hi all,
well i have started another cycle, more weeks of the year ruined. I have my son here with me and i hate for him to see me go through this. I am seeing my dr. tomorrow, i had to start takin fiornal to help me out until my appt. It is no cure for me at least but they do ease the demon a bit. I have been experiencing clusters for about 6 yrs now. Sometimes i feel i can just take no more, but when the pain eases it is in heaven. I do worry what i might do during a major one some time, it seems i go crazy during these periods but i somehow manage to pull though. Does anyone else out there have these thoughts during the dance? I wish a pain free NIGHT & day to all!
I have been a Cluster Head for 23 years now. Fortunately, not every year but there have been enough. In the past they always started in the Fall. This time I was caught off guard and they started in June. All this time I thought it was the internal clock theory and the time/amount of light change was causing them. Now, I am leaning towards stress as the trigger.
Either way, I am taking Methysergide (brand name Sansert) as a preventive. It worked for my last episode 3 years ago and I'm hoping it will again.
Thank you for creating this web site. It is comforting to know that I am not alone.
I've suffred from these Headaches since High School. I always felt that no one really knew the pain I was going through. Since finding this website I realize that I'm not alone.
I wish for a cure for this horrendous condition and I wish there weren't so many who suffer from this as I do. Thank you for giving me the opportunity to have a voice on this condition and the comfort in knowing I'm not alone.
A very helpful forum and well organised. I am a rural GP learning more about what CH sufferers say and do to care for themselves beyond current pharmaceutical drugs, and which if any pharmaceuticals seem to be more than a "band-aid quick fix". So - thank you all, and looking forward to learning.
My partner has suffered from headaches for as long as he can remember. He has them all day, every day and I can't bear to see him in such pain and not be able to take it away from him. We have been back and forth from his doctors so many times with every different headache tablets available but they don't seem to understand that he needs more than a basic painkiller, he's not a man to make a fuss but to see him in such agony is unbearable. Until I chanced on this site, we had been everywhere, tests for epilepsy, MRI and nothing is wrong with him. This time I took some of your information with me and he has now been prescibed Pizotifen. He hasn't noticed much improvement but at least it's enabled him to sleep. I don't know if he suffers from cluster headaches but having read so many peoples stories on this site, it all rings very true. At least we now have information that can enable us to pursue this line and to try and convince the doctors that this is possibly what he suffers from. We've got another appointment with his Neurologist in a couple of months( headaches are not exactly treated as urgent, are they) so at last he can finally get taken seriously and hopefully get some treatment that he so desperately needs. Thank you so much for this site.
Im a 30 year old male, I've had headaces for the last five years. They stared out as cluster headaces that I would get three times a year. The older I got the longer the headace would stay around. Yes I've had all the signs of a cluster headace. But now I get one everyday. I've tried almost every drug to man kind. But I still get these sorry headaces. The newest drug I've have found that worked is Topamax 100mg. The only bad thing about Topamax I found It gives me a bad taste in my mouth. Yuck mouth. Their are some other side effect that last for about a month or two, but will go away. I hope I find something that will work for me one day. If anyone has any suggestion let me know. Thanks DREW
It's nice to know that I'm not alone in my hell.I have had Cluster Headaches for 7 years my demon is back. I was free for two years from him. But he is back making life HELL again. Just remember life is worth living no mater how bad they get. Always remember the time when the DEMON is gone!BOB from Kansas
After 35 yrs of these things I finally found a group that knows what I'm going through. I find that most people just don"t understand. I am 67yrs old and have just recently discouver imitrex. I had given up on Drs. and just lived with it. Over the yrs I have been treated with high blood pressure meds, checked for allergies, and told to live with it. My family Dr. has been in business for 25yrs and I am the only one he has seen with these. I thought that when you reached 60 they stopped, that's a joke. Thanks for the site
Hi I had my first attack on June 1st. I am a heart disease patient. I also moved a kidney stone last year so I know how bad pain can get. I suffered from migranes when I was in my 20's & 30's and thought that pain was gone forever. What a shock I recieved. I am havine a small attack right now. Glad to see this web site. Bob
My name is Derek and I am 35 years old, I have been suffering from clusters now for going on 7 years. For the first 2 years I was able to go through the summer with no clusters,but after that they have been pretty much all year long. I have been on so many meds I've lost track of all the different kinds. about 3 months ago I finally got sick and tired of taking pills that I just stopped, cold turkey!! for the first week I was amazed that my headaches had decreased both in frequency and in intensity, I was thrilled!! well, now reality is back and the terror is too. so it looks as if i have to go back to ergotomine, the only drug that has brought some relief to my clusters,and of course the depression is setting in too.I hate that these headches control my life. For all of you out there who suffer with clusters, I say a prayer for you everyday. thanks for letting me visit. god bless you all.
----Derek
Attention Cluster Headache newbies. A word of advice from a 15 year sufferer. DO NOT GO TO A REGULAR DOCTOR! They are completely clueless about this affliction. I can not stress the word CLUELESS enough. At very least find a good neurologist. Best off to find a headache specialist. I live in S. Jersey and there are 2 close by(jefferson hospital-Philadelphia/and Univ. Headache Center-Moorestown, NJ). Thank god for the Univ HA Center, without them might have ended it all years ago. I still have yet to hear from someone who has experienced worse pain than that of a CH. One final note-The next person that tells you that they too get bad headaches and that they use Tylenol(now theres a revelation) to get rid of it, you have my permission to beat that clueless individuall into a pulp. Well thanks for listening, its been a good outlet for me to talk to others like me.(notice my first entry is a couple spots below). God bless you all! DONT GIVE UP!
Hello fellow cluster headache freeedom fighters. This is the first time I have talked to someone who has the same affliction as I do. I have had them since I was 15 and didn't get a good diognosis until I was 19(University Headache Center-Moorestown, NJ-856-234-7421). When I was 17 they gave me a sinus operartion. HA! what a joke. Ive been on most of the meds and o2(thank god for o2). The fastest relief for me comes from Imitrex injections. Im sure you've heard the same clueless babble from the countless masses. "Oh i get bad headaches too" seems to be the most famous. I have CH and migraines. Everyone seems to have so-called "migraines" but most dont. I ususally ask them if they loose the feeling in 1 side of their body like I do when they get a migraine which usually ends the coversation. As for the real terror, the cluster headache, nothing else compares. They will never know what we go through. I consider myself a tough and rugged indavidual but have been reduced to a crying little girl during more then 1 episode. A migraine to me looks like a day at the fair compared to a CH because I have experienced both. "The Beast is a well suited name not only because of the unequaled pain but because of what it does to your behavior during an episode. I have destroyed entire rooms. I have heard the pain described as being worse than childbirth. But the worst part about CH is what it does to your family. My wife takes care of me and knows better then anyone who doesnt have it what it is like. My children see me go from dad playing on the swing set to complete lunatic in less then 15 minutes. So that being said, God bless you all and try not to give up hope!
what is the best medicine for ch ..i can,t take much more of this pain
I had have cluster and tension headaches because of aneima as well as diabetes and high blood problems with salt intake untill even went blind. But we have a loving God who through the Holy Spirit have led me to the herbal store to purchase Headache tea and Feverfew and I take Tahitian Noni Juice I became a distubtor because it helps everything headaches of our kind, diabetes, and high bloodpressure and cancer and yes it is proven in the phyisicans desk reference 2003. The site is www.TahitianNoni Juice by Morinda.com The whole sale number you can use is 1-800-445-2969 under Sister Charzetmaurica and Minister William Brock our ID# is 1454575 the code name on the acct. is Shrek write me and few lines gving God all the Praise. It is not a scam nor does the juice taste great but it works really works. Also you must give it time 2weeks or so even folks have seen results faster. DO NOT TAKE IT AT NIGHT it gives too much energy. My children take it also because they to have certain problems, where I had too give them this help it is a fruit that comes from the same place we come from God. The most potent one is tahitian noni and you can not get it at the health foods store they will sell you a bottle of juice and call it Noni and even Tahitian Noni but believe me there is no pulp in it and it is not the same. This Juice is patent. The cost is to get the bottle to you, but you can at least get the blessing of getting the help wholesell. God Bless All. Pass it on all the infomation.
Been a Cluster Headache suffer for 11 years, had a 2-year lapse in 2001 & 2002 but for 2003 the devil has come home to roast.
I've had these headaches for about 4 years. It always feels like the back of my head is stuffed up. Not my nose.
I try using Saline which doesn't work. I've cut way back on my Carbamazepine for my seizures because I read it can cause infections. My last MRI said something was wrong with my Sinuses, but nothing was done.
Hey, I got a responce for a ch suffer and she said to try and get on SSI. Is that possable and hard to do? any info would be great. thanks have a pain free day and night.sandy and bud
I am 46yr old female who was diagnoised with clusters 8 years ago. It is so hard on my famial. My 4 year old Black Lab "BUD" knows they are coming before I do. He won"t let me go to the bathroom when one is on it's way. I have done every natural remady I could find, lots of drugs , sansert,etc. I was on prednisalone for 4 years before it started weaking my imune system and supressing my bone marrow. they would start me on 80mg for 7 days then start tappering down if they let up some. 4 years I found a Dr. in my home town who was willing to work with me and help me find something other that steroids to help me. What a god sent he has been. I wanted to try a SSI and we started with prozac and I got some relief the first year, which means that i didn't end up with a 300.00 bill from the er for a morphine shot. I started on paxil a year ago and it has helped some also, still have to have the steroids when things get real bad. I have used the imitrex and it does work ,have not done the shots. I am a working white women with no insurance and I can no afford the good stuff. thanks for your site. I am always looking for some thing that works that i can afford.sandy and bud
Being the daughter of a mom who suffers from these headaches, I have seen the devestating effects they bring to her. I have never in my life seen someone go absolutely insane with pain, punching and kicking and crying for help. Watching her endure on of her clusters is one of the most painful experiences I've had. Our family has been there for the past eleven years that she has had them. To see her walk around like a zombie, completely drained and exhausted from lack of sleep, numbed from pain, I want to cry. I'm not a doctor, but I am greatly concerned and interested in methods of releiving the pain. I've started searching, comparing symptoms and medications, every bit of info I can. I know its a long shot, but I am hell bent on finding out what causes these horrible headaches. I just want to voice my opinion on this, because from what i've heard, no one seems to pay any attention to anyone who suffers from these. sure, doctors show some concern, but they sure haven't helped my mom out. The only thing that really works for her is the oxygen, and she discovered that out through this site. Thank you so much, for having this site, and giving my mom some relief and comfort knowing that there are thousands who also suffer from clusters. If anyone out there can help me, in any way, please do. email me, tell me what works for you, what doesn't. When do your headaches occur? does it help to sleep sitting up or down? have you ever had a serious neck injury prior to the beginning of the clusters? please please help me and send me anything you can, I would love to hear from you out there. I've seen what you go through, and I deeply sympathize. I've seen too many of the "killer headaches", and i want to know more.
Hi, I am a wife of a sufferer, and was just wondering if anyone has had gall bladder problems, or irritable bowl syndrome-ibs, as my husband does. Some people think the headaches are caused from malnutrition due to the ibs. I'm starting to think they are caused from that or another organ such as the pancreas, liver or kidneys that malfunction and dump waste into the body and poisons, causing the headaches. Can anyone relate to the ibs, or have had other tests to rule out the malfunctioning of the other organs?
thank you Wendy(wenlar)
I have suffered from migraines and cluster ha's for 20 years. In the past I have always been able to shake them relatively fast then again I think I have desensitized myself to the annoying discomfort and I am quite use to functioning with a constent Ha.I've tried the usuals, cold and sinus and allergy crap, which sometimes brought me relief.It was just recent I actually experienced the excruciating,unmercyless,tormenting,suicidal pain of what now has been diagnosed as acute/chronic cluster migraines with an additional bonus of muscle spasms!
The first nite I was awakened by what I thought was someone ramming their fingers in my eye socket and lifting me straight up in a jerky movement like a fish getting gaffed in the eye and brought up on a boat.That was nite one , they came on relentless and seemed to never stop cycling.I was so exhausted from clenching my fists,crushing my skull and walking around.I did however make it through the day with some mild boangers but as the nite drew near I could feel another sleepless nite ahead of me.
I tried to go to sleep but every time I tried to get comfortable I was pissing the demon off and would get just a stab of reminder.
This nite i spent on the livingroom chair and floor in the most horrific pain of my life.My eyeball felt like it was being vacumed out of my skull and i thought my brains were next.Now I think is when I actually started to border insanity from the constent torment and pain.I remember sitting down sqeezing my head and stop breathing to get some relief and thought seriuosly if i had a hand gun i would just ram in my skull and pull the trigger in hopes of relieving this pain.
What was even worse was thinking to myself which actually brings more pain on, that I was either having a stroke or some kind of aneuryism and i could actually feel the blood trickling and squirting out of my skull.Sounds like a really bad acid trip but I wasn't that lucky.
My wife could actually see my face dropping and saliva dripping out of the corner of my mouth as well as the famous bulging squirting eye.
I think this finally got me to go to the ER .
I got it all there as well as the shaft. Toridol,demerol,elavil,zanax immetrex shots..you name it I got it, but I finally feel asleep for several hours,I remember everytime i opened my eyes i did it slowly to see if there were anymore hangmen coming.
I truly can say that I have felt the excrutiating pain that most of you have gone through and am glad someone understands because to explain it to anyone else quite frankly gives me a Ha and then sounds so dramatic and fabricated.
stay alive don't take elavil,busparione and drive!!!
After suffering for so many years with what my doctors have said where migraines. And trying everything they have ever suggested to help(from vitamin E to Imitrex and everything in between)and nothing ever really helping.I think thanks to this site I have found the real name of this monster that continues to plague me a few times a day for weeks at a time.I am hoping that with this new information I might be able to find the help that I need.Thank you so very much.
I have suffered with migraines since I was 14 years old. I am now 39 and still have them on a regular basis. In the beginning I just suffered with them. I didn't see a doctor about them til I was almost 20. But even then, it was no help. For the past six years I have seen a neurologist who has prescribed such preventatives as anti depressants, and other meds to stop the pain before it was a full blown migraine. Still no help. I now take an anti depressant everyday and I also give myself Imatrex injections when I feel a headache coming on. Sometimes the injections work sometimes not. Sometimes nothing help but to go to the ER where they start me on an IV and then inject composine, demerol, and DHE. Relief is on its way.........
It's hard to live life when you never know when a migraine will strike. And I get one at least once a month.
This web site is wonderful!!!!!I have been suffering with these headaches for about 3 years.Ihave been told I had pulled mussels to migraians and everything in between. I finally found a good nero.who has helped more than I could begin to say.Thank You for all the great info. and I hope everyone is pain free!!
Ive ben a Clusterhead for as long as I care to remember. I am just, I hope, over another episode of the demon attack. I have just found this site and its so reassuring to know that I am not on my own.It actually made me cry when I read some of the letters as it could have been me talking. Nobody can understand what it feels like to be afraid to go to bed and to wake up with such excrutiating pain that you just want to curl up and die, and to go from a normal, happy go lucky person to a complete and utter wreck in a matter of seconds. When my work colleagues so "Poor Sue she's having one of her bad heads again" their ignorance just annoys me!!But now I have found true friends, who understand and my thoughts are with you all.
Finally, I found a Doc that said "you are having cluster headaches, not migraines!" I can't believe how true the stories of your members rang throughout my life for the past four years. I look forward to spending more time at your web site. Excellent job!!!
Hello to all. I am new to this site and find it to be a GOD SEND. I am currently in a cycle that has lasted for about 4 weeks now. I have been SUFFERING from the BEAST for about 12 years. After spending hours now on this site i feel strangley better knowing that I am not alone. My friends and family are as understanding as can be but it feels good to read other peoples thoughts who acctualy suffer as I do.
I feel like I just reached The Wonderful Land of Oz. I finally discovered this amazing site. I've spent hours reading other members postings. Finally after 20+ years of suffering, I have found people that actually understand what the BEAST is like to live with. I have a supportive family, partner, and friends, yet they can only sympathize, but in no way empathize. So for finding this site, I am thankful.
I thought I had the Beast licked, finally defeated, had not had a cluster in over 2 years. Silly, silly, silly me! The Beast has once again decided to pay me a visit, he dropped in about 5 weeks ago, and like the "guest from hell" continues to overstay his welcome. I've never had any real success with any medications, Cafergot & Inderal were totally useless. Oxygen in combination with verapamil was so/so. Of course like many of you, Sansert seemed to work best - why on earth did they take it off the market I'll never know.
I'm a 2x a day sufferer, during my cycle. Which fortunately I think is winding down, they're under 60 minutes in duration now (hip hip hooray !) down from 2+ hours. So maybe my "guest from hell" is getting the hint.
Just wanted to thank all of you for your postings. This website has been an absolute god send to me.
My son gets headaches every time he gets out in the sun. He doesn't sweat, and over heats. It sometimes takes hours even days for him to get rid of the headache's.
Hi everyone I don't know where to start but I've been a sufferer of clusters for God as long as I can remember and basicly feeling on my own.I spent 18 years in the Marines and in 1996 I lost my place because of one of (the Beasts)well enough of that being a man and a Marine we help we don't have headaches ha ha!!! I've suffered though my whole life with missed dianoses being told I'm just making a scene or wanting attention and though (tears)in my eyes from finally having the guts to seek help outside the miltary medical field and hopfully with my poor wife sticking by my side I can get on with life instead of sitting in a dark room away from everything. Thank You from the bottom of my heart Price Williams
Hi everyone. I wanted to let all of you no what I am now doing on a nightly basis which is helping my headaches. I am taking a 3mg dose of Melatonin. I read somewhere that people with migraines are low in Melatonin so I decided what the heck I will try it for my cluster headaches. I have not had a headache this year. I usually start my cycle in May. I have not had a single one so far. I take the Melatonin 1 hour before I go to bed and I sleep like a baby and I dont have any headaches. I will post again if I start to have them but so far so good. I think that it is worth a try. The pills are cheap and natural. I got my last batch from Puritn Pride. I paid $6 for 3 bottles of 60. I also have oxygen for when I do get a headache. I have been very lucky this year. I usually average about 10 headaches a day from May till October. Take care all and good luck beating the demon. Your freind David Aguiar
I found this site very useful. Not only was the medical information informative, but I was surprised to see how many people suffer almost the same exact symptoms that I do. Keep up the good work.
Hi Fellow Dancers,
My sister posted a few days ago and introduced me to this incredible site. I too, like she, and many of us here, are Clusterheads, although my pain is in no way to the degree of hers, and I would gladly take her pain to give her a chance at happiness...I've watched her suffer for way too long; I love you, Leigh-Leigh! I wanted to say to all on here, if we must dance the dance, it's comforting to know that we don't have to do it alone, although, I ask the heavens every day why we have to suffer at all and it's a question that plagues me? I have, in the past tried many meds, but for me, none have worked, as I suffer from many different movement disorders that mask my symptoms. Year after year, I play the game of "Misdiagnosis Potpourri"; Pick a Disease behind Curtain #1 and win a new drug to cause more Dystonic reactions! And so it goes...Always good to keep a sense of humor! I'm very pleased that my Dr's enjoy our visits. Always keep them entertained and NEVER let them see you cry! Why? Because truly they couldn't give a Damn! At least that's been my experience. Presently and for the past 3 years I haven't had ANY prescribed pain medication to manage my pain during an attack. My neurologist doesn't believe in it. On occasion my Internist takes pity on me. Can you imagine???? And so...Like my sister, my love for my dogs have carried me through and until 7 months ago, my beloved labrador Zachabee was my catalyst for healing. Thru breathing and pet facilitated therapy exercises, he would help me to breathe thru some peaks of the pain. He passed away in October, followed by 2 of my other wonderful therapy dogs, so life is much darker now. But, I implore all of you who share the unconditional love of a furred friend, feathered or scaled friend, to allow them to be part of your treatment protocol. Please remember, these wonderful beings love you with a pure heart and will never abandon you. They truly DO have empathic abilities. I never asked Zach to play this role, it was one he proudly ASSUMED independently and YES, it did help some. If nothing else it reminded me that I was not alone.
I'm so sorry we have to all dance the dance but, again, since we do, if you need a dance partner, I suggest you make it your Labrador or Siamese or Cockatiel or Snake. In the meantime, may this cycle break for you swiftly!!!!!
My wife was orginally diagnoised with Migraine Clusters. About one year ago it was discovered that she had Sarcoidosis instead. As this disease is fairly rare and mimics Migraines perhaps there are other people that are being treated for Migraine Clusters when what they may have is Sarcoidosis.
i wished through a decade of chronic hell and maddness that it all would just go away. i am sitting here three years later in the middle of the night, because i am still afraid to sleep until i see daylight, thinking that the pain was all i had for so long that without it i have nothing. i feel for all our breed because the longer you dance the more soul you lose.
i have been a sufferer for over 25 years ihad pretty good control over my attacks by using prediszone,verrapamilland,sansert,but since they don't make sansert no more i'm back in my little hell again.
long time sufferer, first time viewer.GLAD to know im not alone.44 years old, attacks since I was 27.Last and longest stretch I've had w/o an attack approx. 14 mos.They returned 4 days ago.HERE WE GO AGAIN...
56 year old male, last demon attack, 11 months ago; this was after 11-1/2 months of hell. Doctor said I almost made the "chronic" club. Thank
God I didn't. You may ask, "what did I do to stop them?" The doc gave me a nerve block at the base of my skull, left side. Had a few attacks on the right side after that but they haven't returned.
have been a VH sufferer for may years but aftfer a gap, started getting it again this year in Mid April till mid may 3-4 attacks per 24 hrs.
The current drugs that are working are 60 mh Prednislolone / per day for 7 days and then reduce by one tab per day ( 11-10-09-08.... ) Also Verapamil 240 mg / day and Imitrex IM if attacks come. Luckly attacks have stopped for the past 4 days but the drugs are making me dizzy and drained. ( it is better than getting the pains
Since I don't have a computer yet (being on disability), I was on my mom's looking for clues to a new pain I've been having in my left jaw when I came across this site. I actually cried, and I don't do that easily! I was diagnosed with cluster headaches when I was 20, altho I think I started getting them much earlier. I'm now 42, and I'm in my 8TH YEAR of a cycle, with only 18 months of relief from the last one before the current cycle started. Like many of you, I blame these headaches for ruining my life. I studied nursing, but I couldn't practice, because how do you kick a patient out of bed when you have to lie down? The pain, and probably the way they turned me into SuperBitch, destroyed more relationships than I'd care to count. People do sympathize, but even those who get the occasional migraine just don't know, and the rest always act like they think, "What's she making such a big deal about? It's just a headache!" I've actually heard that from several doctors. In fact, this cycle was triggered by a whack to the head by the Xerox machine at work. When I was found unconscious at my desk a half hour later, they rushed me to the hospital. My boss, thinking she was helping, printed out a copy of my medical history and the 3-page long list of meds I've taken over the years. But the ER doc wasn't able to reach my primary care physician, who didn't know anything about CH anyway, and he flatly refused to give me a prophylactic cocktail of steriod, tranquilizer and painkiller. I was later told that might have prevented this 8 year siege.
I have tried every drug and every class of drugs imaginable, including holistic and herbal approaches. Biofeedback helps psychologically, if only to give an illusion of control, but nothing helps the pain for me. Those of you for whom oxygen or imitrex works are so lucky! To all those "experts" who say cluster headaches do no physical damage, well they gave me a stroke. While that one didn't leave any permanent deficit, they can't guarantee that I won't have another one, or that it won't leave me paralyzed. I live in fear of that.
The worst time was 4 years ago when I moved to Florida. I couldn't find a doctor who would treat me, and who was also on my health plan. I had nothing - no painkillers, nothing! Even tho I'd always rejected suicide because of my belief that everything happens for a reason, and if we don't learn the lesson we're doomed to be reincarnated until we do, I finally gave up. Knowing I was mortally hurting my fiance and my family, and abandoning my dog Worf, whom I love like my child, I tried to kill myself. From the type and number of pills I took, it should have worked, but I woke up from the coma after 3 days. Naturally, they sent me straight to a psychiatric hospital, but even tho the shrink discharged me almost immediately, acknowledging that I did it because of the unending pain, I still had no doctor. So just a few months later I wound up back in the hospital with an aspirin overdose. Not a suicide attempt this time, but just because I had nothing else to take. I spent 2 horrible weeks in the ICU, nearly permanently losing my hearing and renal function, and bleeding from my entire stomach lining, and they shipped me back to the nuthouse! But still, no doctor. I did find one finally, and then I moved back to New York last year. I'm now being treated by a chronic pain specialist, but because of my various drug sensitivities, circulatory condition, and financial limitations, all they can give me is generic narcotics like morphine, hydrocodone and oxycodone, plus Trazodone. I spend 90% of my time in bed, and it sucks! I'd give anything to be able to work again, to feel like a human being.
In addition to everything else, when the pain is especially bad, and I'm under alot of stress and sleep-deprived, I have seizures. My neurologist won't medicate me for them, because they're so erratic, but they're very scary. Luckily my Alaskan malamute/wolf hybrid can sense an imminent seizure and alert me, but since I have an invisible disability, taking him places with me sometimes leads to ugly scenes. But that's another subject!
Anyway, I'm so glad I found this site. I don't really know how to use these things, but my sister is getting me a computer and I'll learn. I never wanted to talk to other sufferers, thinking what's the point of listening to more depressing stories. And it also annoys me that people are throwing the words "cluster headaches" around so freely lately. How dare someone with the symptoms of a bad tension headache compare their pain with mine! But it does help to know I'm not alone, and perhaps to even help others who are just learning to live with this horrible disease. Blessed be!
It is comforting to know I am not alone or imagining my pain. My doctor, husband and friends can't possibly imagine my pain and I hate to whine and talk about it. I was glad to find this web site and find that others have the same symptoms. This has been going on for 4-weeks and growing in intensity. I was sure it was sinus related at first but now think I will see a neurologist.
hi i know this is a guestbook but i am using it as sort of a message board. i just wanted to know if jill was doing alright or not. jill, i hope that med combination is still helping you out. thinking of you as i sit at home over summer break, your friend, liz
i suffer every day sometimes twice a day with a cluster in my left temple, that would make a saint say a foul word. the only med that knocks it for me so far is imitrex.. any suggestions.. since i am on medicaid i only get 9 tabs a month. so i bite little chunks when needed.
I will second the comment about regular exercise. I have had many cycles that have started after not exercising for a week (such as when I have gotten the flu or a bad cold.) Now, I exercise regularly regardless of how sick I may be at the time. It might be unconfortable, but it beats the possible alternative of getting more headaches! I have had mixed results with exercising at the onset of a headache. It has delayed or reduced the severity of a few headaches; on the other hand, it resulted in one of the worst headaches that I have ever had, and I have never tried since. But I believe strongly in exercise as a preventative. (And it is a one whale of a motivation to stick with your exercise program!)
I am 32 and I've had cluster headaches since about 20. Unable to get a diagnosis, I was lucky enough to be dating a girl whose dad was a neurolgist. He knew exactly what I had, and I was able to get on a path of treatment.
The two lines of treatment that I have found the most effective are Verapamil and vigorous exercize.
I am surprised that so few people sight exercise or vigorous physical activity as a treatment method. According to my physician, who is well-versed in the subject, exercise is well know to often stop or delay the immediate pain, and exercise on a regular basis can sometimes prevent cycles.
I am currently in a cycle though that is not responding consistently to any particular treatment.
I am female and have had cluster headaches for 35 years. The headaches started when I was 18 years old. My cycle is usually every 18 months to two years. Each cycle can be on either the left or the right side. Once, when I was in my 30's, I had a transference from the right side to the left during a headache, and the attacks continued for another 2 months. In my late 30's, I was diagnosed as chronic and had the headaches for close to one year. I managed to take prednisone for close to the year, which I had prescribed by my GP., but when I had to see the neurologist, he stopped them immediately. In 1994, suffered another attack and was introduced to Imitrex - needles. (Nose sprays don't work) Great drug! Works every time. Usually 2 daily at onset. Took care of the ones inbetween and I had a life again. After all those years 10-12 headaches daily, and then the night ones - no relief and up to 12 on bad nights. Then 8 years of no headaches - thought I had outgrown them, then in 2002 a bad attack. Doc introduced me to oxygen - 7 litres necessary and on for 15 minutes. Great relief in aborting the headache but they keep reoccurring every hour. This year, another attack, which started May 06. Back to Imitrex and oxygen. Hope everyone can find some sort of prescription or something to help them with this pain. All the best to you.
I have weird headaches that began in early childhood and have continued until now, 50. I have seen all kinds of doctors and had all the tests to rule out "something serious", as if these headaches are not. I see a neurologist and am now taking Zonagran and amytryptiline as preventatives, then Zanaflex when the headache is really bad. I take a half a Zanaflex almost every day. My headache appear to worsen just before and after my period begins, but my family doctor sees no benefit to any hormones as I ahve no other peri-menapausal symptoms. Have any of you had similar experiences? If so, were you able to do anything to help prevent the headaches?
Hello my fello suffrers, I have wrote here before but i forget my passname and such becasue mabe I have one of these awful headaches. i go to many doctor for this. I go to a shrink even about this becasue sombody tell me it my fault. see i have alcoholism and i have some guilt and there mistery in where i life. they tell me maybe guilt is cause of headache but hangover cause me too. you know they tell that many guilt mabe, i have done so bad thing in my life and they say i am denials. listen to me this, i tell the shrink that i stole a dining room table from goodwill, now this was so much years ago in my live, but from industries drop box and he think i feel guilty for that. no way I say, i drink and say it never happen. the thing i do to other, it never happen. I just say they do it and i drink and I believe they do to me, can any see i am victim in what i do to other, can you see? so it can't not be guilt becasue i don't feel no. yes I do bad to other but denials is when you are alcoholic, so that not my problem. someone is cause for killer head aches are not my fault. shrink is wrong and wrong again. can someone else pleeeeese tell me good doctor in so. california, i live in desert and maybe the heat? i am miserble here, but i lose my home in oregon becasue i say i am disabilized becasue i don't work so good as you mabe can know, and that not my fualt either, hehehe. but serious, help i can no more take these heads aches.
Bill Truett
(760) 369-7067
Desert Gold, Yucca Valley, CA 92284
Hello everybody. My name is Mike, I am 51 now. They started for me when I was 27. My first time here. I am surprised to learn that I am not alone. I am sorry there are so many of us. I have been looking at the site for a few days and decieded to post, and add my two cents to the conversation. Yes, "they are back!". I am originally from the Seattle area, but moved here to Taiwan a couple of years ago. I have gone from aerospace engineer to English teacher. It is not bad, I kind of like it. Much less stress in my life, and no political BS to put up with. I have also tried just about everything there is, and nothing ever worked much. Imitrex injections work. Imitrex injections really work. But, I can't get them here in Taiwan. Sometimes I wish I did not know about Imitrex. I feel like they dangle this carrot at the end of a stick to us. From what I have read, most of us know that it works but can't get it, can't get enough of it, or can't afford it. What do they do? Make this stuff on Mars or something? I think it is time we figure out how to make our own Imitrex. How hard can it be?I have one shot left that I brought from the US a couple of years ago, but I am saving it for the dreaded K10. At least I know I can kill at least one beast. I'm at K7 now, and feeling very angry about it. I hate these things, I hate what they do to me, and I hate what they do to all of you. I get mine on the left side, but I am also left handed. I wonder? I pray, but it never works. Now there is an exercise in futility for you. Sometimes, I think I am being punished for something I did in another lifetime. I hate being awakened from a sound sleep. I feel like I have been grabed by that big birds claw I read about here, and jerked to my feet. I reach for my last shot of Trex, but have to pause and evaluate if it is a K10. Having only one shot left is its own kind of hell. How do you choose which one to save yourself from? I am ashamed to admitt that I tried suicide once. Didn't work and I ended up in the psych ward with no meds. More punishment from an unsympathetic medical community. But I know what it is like to reach that point where the pain, the endless pain drives you to seek permanent escape. Don't tell me you havn't thought about it. But there is no easy way out for us, and I for one am not going to give up, so don't any of you give up either. I remember one time in the ER the doc gave me a 20 mg injection of morphine. After 10 min. I got up and said thanks doc, he was shocked that I was able to get up, said I should be asleep. I don't know about that I said but I feel much better now, and I still have the headache. I guess what I am trying to say is that narcotics don't work, they mask quite nicely, but they don't work. I am trying Cafregot tabs now and getting some relief. I tried these once before, years ago and they did not work, but this time they are at least cutting them back to K3 or K4. I can live with that. I tried accupucture for the first time today. It worked, but I was in the doctors office at the time of onset. Now I am in the middle of another one and the ergot is pulling it down a little. I think accupucture is something you need to learn how to do to yourself for it to be effective. I am going to ask my doctor to teach me how to do it. It hurts a little bit, but nothing compared to a CH. My concern is if I can keep myself steady enough to do it to myself at the right time. Oh yeh, you can't get depakote here either, that helps me to break the cycle to 4-6 weeks, 2 per day, 1.5-2.0 hrs, instead of the usual 8-12 weeks at 4-5 per day, sometimes 6-8 hours at K9-10. I am also trying a Chinese med called, "Fong Tong Yao", it means wind pain medicine. It is a powder that you take with a glass of water. It also seems to help reduce the intensity of the attack, but it does not stop it. I guess reduction is better than nothing. I hate the fear. I hate the pain. I hate being treated like I am an idiot. I hate it when doctors try to tell me, "it's just in your head". Well of course it is stupid, you think I'm crazy? Don't answer that. I love doctors who listen and understand. They are a rare breed. Thanks for letting me have someplace to talk about this a little bit. Maybe as a group we can tip the medical community awarness scales in the right direction.
I can't believe that other people suffer like I do. I am 21 and have had these headaches since I was 15. Still the doctors won't diagnose me, my consultant is convinced they only affect middle aged men. Finding this site has made me determined to fight them. My last attack was last autumn for 2 months, and it ruined my 21st birthday. It has affected my university life as I can't work and still can't concentrate as I am so scared they are going to come back soon. Thank you for this site. You have given me hope.
Hi everyone, it's a comfort to know there are other people out there who I can relate to. After 20 years of suffering I thought I was going mad or I was over reacting to the pain iv'e been experiencing. Reading this site as made me realise I haven't.
I had CH for 20 years and accidentaly attained a cure. It was only after a few years that I recognized that I had a permanent cure. By then my Dr had retired. However, I would be pleased to work with and ENT or neurologist on my situation.
When God asks the things that I am most thankful for, I would put my CH cure at the top of the list.
From Portugal, I just want to say that you are not alone, I allso have Cluster Headache, and I am sufering from 17 April untill I do not know .Rui
JUST FOUND OUT WHAT I HAVE.BEEN GOING ON SINCE 4-1-03
UNREAL.ALL I CAN SAY IS GOOD LUCK TO ALL THAT HAS THIS.
IF THE WORLD ISNT BAD ENOUGHH ALREADY
I have had Cluster Migraine headaches for over 25 years. The best & safest treatment so far for me has been o2 therapy 7-8 litters per min. The only problem is it is not possible to carry a bottle of o2 with you when you travel.
I am also trying Zomig ZMT. I am having a big problem finding out what the safe dosage is per month is. My doctor does not know and the manufacturer, AstaZeneca, does not know. Blue Choice will only pay for (12) 2.5 mg tablets per month. They cost $226.99 per (12).
What drug works and is safe is the big question and has been for me for the last 25+ years.
e-mail me gary@grbowler.com
has anyone found something that helps relive the pain. I have read that breathing oxygen will do the trick?
Hi, my name is Richard. I have been suffering from migrane headaches since the age of nine. My earliest memories of migranes include the occasional ride in the ambulance from school, until they got used to the idea that I have migranes. When I was younger I used to think that I may be super sensitive or just being a baby about a stupid little headache, but the harder I tried to fight the pain the worse it seem to get, I suffer from the migranes that mess with my vision, give me hot and cold flashes until I vomit, oh I hate that, and sometimes cause me to black out. In my history of the migranes I have been around the block with all the medications, accupuncture, acupressure, MRI’s, allergy testing, and whatever else I could try. And ya know everytime I always ended up back to the old solution of wrapping an ace bandage around my head, and sitting in a quiet dark room rocking the pain away. It’s amazing what you learn in a lifetime of suffering because you can’t hold on to a job to long because people just don’t understand that you just can’t help it. I now know what the term a jack of all trades means, lol. So here I am at the age of 41 fighting to keep working, not a good job, but it’s a job. I keep working just to keep my sense of self respect for myself. Currently I’m on a barrage of medication along with a healthy dose of pain killers just trying to make it through the week of work, usually not without losing 1 or 2 days of work. These past few years have been the worst for me because this current migrane bout has lasted for more than 9 months. I have burned the top of my head twice, not being able to tell the temperature of the water while taking a shower, because of the combination of the pain and the pain killers. Passed out behind the wheel, so I now no longer drive.and been through 2 jobs. Now I here about this medication “botox” that may be able to help. And ya know I’ll probably talk my doctor into giving it to me. I am hopeful and I feel sorry for all of the rest of you that understand what I say here, “from experience”. I have read some of your experiences here and felt a bit of relief, that someone understands. God Bless all!
Rich.
Wow! I am truly amazed, and even more relieved that there is actually a sight like this available to us cluster sufferers. I am a rare case, as many specialists have told me that females are so unlikely to suffer from these horrible, real-life nightmares called "cluster headaches". I am in my late 20's, and have been battling these HA's for nearly 10 years. I've been to countless doctors, specialists, etc. I've tried too many meds, the wrong meds, ALL meds!! Still no relief. Many times, I just need to talk with someone else who understands the hell of this horrible pain. The only way I can describe how this feels is this... When the headache comes on, I feel like I might die, and when that headache is full blown, I just wish I would die. Sounds crazy to some, but to all you fellow sufferers, I'm betting that feeling is all too familiar. I'm happy to join this sight, not only to gain more information and support, but hopefully to be of some support to others. Thank you,
Tara G.
After visiting this site, I have come to realized that I may have been mis-diagnosed for most of my adult life. Although I may periodically suffer from migraine headaches, I believe I may have actually found some information that can more descriptively describe the incredible, intense pressure I have sometimes had to go through. Most recently, I awoke around 2:00 a.m. with a pounding headache. I knocked it off to, the weather, spring coming, change in barometric pressure, long day at work, late to bed, but with as many excuses, I desperately tried to return to sleep. No way! Couldn't. I could now feel my pulse through my eyeball. I crawled out of bed as quitely as possible, trying not to wake my better half. He's a light sleeper, he knows...I'm in pain. I make my way to the kitchen, open the freezer door, I need ice, lots and lots of ice. I need to create a brain freeze. The pain, I'm not moving fast enough, I two step in front of the fridge. Ice pack, got it, quickly I put it on my face. My forehead, no good, my cheek bone, numb, don't feel anything, my mouth, my nose, my right temple, darn it, nothings working. Hunch over the kitchen sink, drop the ice pack and just cry. Try massaging my head. I make my way in the dark to my living room, drop to the floor and beg the good lord to take it away. I lean over the couch, rocking into the back of it, pounding my head into the center beam. This isn't working, my brain will soon pop out of my sinus. That's it, I got a sinus headache. Oh! Pain! I don't wish this on my worst enemy. I'm on my feet again, back in the bedroom, grab my towel and into a really, really, hot shower. Need to feel pain elsewhere. Water is pounding down on me. Water massager on my face, tears running down, right sinus feels congested, massage the head. 15 mins. later, I lean on the wall, I can't take much more, I have to get out. Don't bother drying myself off, turn the water off and I'm off for round two. Pace the kitchen, pace the living room, until finally, like an exhausted child passed out on the couch, half on/half off, on my knees. I awoke to a chill and realized I had won this battle, I had to get back to bed and get whatever sleep I still could. As I crawled into bed, I looked at the clock, 3:45. I had battled this demon for 1 1/2 hours. I laid myself down carefully not wanting to instigate or aggravate the situation any further. I was spent, I had no fight left in me. I awoke a couple of hours later, tense, afraid of dueling another demon today.
There have been many a days and nights, sometimes up to 14 hours waiting in a waiting room to see yet another doctor. And the diagnosis has always been the same. Low iron, low oxygen, will sometimes give me more migraines. Not once have I heard a doctor mention "Cluster Headaches". Three years ago, was the last straw. I gave up on the health care system, it took 8 hours to get a C.A.T. Scan, and then they had the nerve to tell me to return that morning at 8:00 a.m. to see the neurologist again. It was now, midnight. I don't often surf the web, and never thought of looking into my "migraines". Well, I just wanted to say thank-you for such valuable insight. For I may now put some effort into finding someone who does know what my suffering is.
Hi everyone... I have a 6 year old daughter who gets migrains. She has been getting them since she was 2.The Dr. finally had her get a MRI and all looks clear. The thing that i find weird is that she gets spiking fevers with her head aches and they last for 3-4 days. Has anyone ever expirienced this? And if so what would you recommend to manage this condition? The Doctors give me the run around and i just dont know what to do. She gets them almost every other month, sometomes even more... Any advice is apriciated... Thanks. and good luck you to you all....
I had cluster headaches for over twenty years. This year I tried melting one half of a phenergan (25mg)in my mouth and within 10 minutes ALL pain and symptoms were gone for the whole night. Now I don't have to live in fear of the next attack. Good luck All!
Do you have information on this website about breathing pure oxygen from tanks during espisodes? This gave my husband some relief. I can hardly believe there is a website about cluster headaches. My husband never knew anybody who had this condition. My heart breaks for every one of you who lives with these headaches...and for your wives (or husbands). My husband was lucky enough to be treated by Dr. Kudrow, who figured out about the oxygen... but my husband was already ruined from so much medication. Reading on this site about all the meds was a walk down the horrible memory lane. I was very happy to read that CH's are not usually genetic, because I worry every time my little boy says his head hurts.
Hi. I was diagnosed this morning with cluster headaches. I was happy to read all that you have provided and it is comforting to know I am not alone in this (it certainly feels that way when I have a headache). I hope you keep the site going!
Hello, this is the first time for me to see this site. I have suffered CHs for about 8 yrs (I am 55), and I can honestly say they have basically ruined my life. The headaches first began in the middle of the night, then moved to early evening and now late afternoon. I have been on procardia, depakote, verapimil and lithium and now added topomax. With these combinations of drugs my libido is zilch and still no satifying results for the headaches. O2 does work fairly well if I begin a onset of headache, otherwise takes 30 or 40 minutes. Lidacaine nose drops worked fairly well at first, but not now. I recently was prescribed imitrex nose spray, but because it cost about $22 a spray I have not yet tried. When I don't have a headache I a fearful of when an attach will occur. I would like to know if anyone else feels as I. My pain usually begins at the base of my neck and moves across the side of my head. Not as much eye focus as most. Pain is best described as eating ice cream too fast and getting a head freeze, except it doesn't go away in seconds.
It's been a while since I posted.Still chronic with no respite...24/7...but the site is a great help. Be pain free.
Nothing new. I am as glad to find this site as everyone else. I am limited in time now but will become a regular once the school year is over. 49, teacher, smoker, cluster for 8 years, imitrix helps, just began a new regiment of medicine, had to get off the ergotamine, so happy to find people who know what this pain is like.
Sorry -- I hit the wrong key! Let me begin again...
I have suffered from clusters for twenty years, and in that entire time have only encountered one other victim. It is refreshing to see a site that contains this much support from those who suffer from the same disease.
Cluster headaches are a uniquely solitary experience. Of course, no one truly suffers alone -- just ask my family and my wife. My mother, in particular, has died in agony for me every single time that I have had one of these nightmares. (Even when I lived 50 miles away from her, I swear that she always knew when I had an attack...) But while others may sympathize, they can never empathize. Not unless they have felt the same pain.
I have always been irritated every time a woman tells me that men do not know what pain is since they have never given birth. Well, try giving birth six to eight times a day, nonstop for two months, then repeating the process six months to a year later for more than half of your life. Then, maybe, I will let you condescend to me about suffering.
Condescension is the hardest thing. No one takes headaches seriously unless they suffer from them, specialize in treating them, or know someone who has them. I am sick of hearing, "Well, have you tried a chiropracter? Have you tried feverfew?" or any of the other twelve million useless pieces of advice. Listen, stupid, this is a disease, just like diabetes. Would you tell a diabetic, "Have you ever tried insulin? I hear that works."
Only four people in the world knew what it was to be a
Beatle. Only people like you know what it is to suffer from this level of pain. After years of hearing ABOUT other victims of this truly horrifying disease, it is wonderful to hear FROM those victims. You all have my support and prayers.
I have suffered from clusters for twenty years, and in that entire time have only encountered one other victim. It is refreshing to see a site that contains this much support from those who suffer from the same disease.
Wow. I actually was searching from something totally different and happened to find the link to this page. Ironic since I was diagnosed with cluster headaches last fall. I had experienced them in the past but they always disappeared in a week or two. Last fall was the worst ever with 5-8 one-hour headaches a day that lasted for months. One episode was so bad that my whole body began shaking uncontrollably and ended with me attempting to knock myself unconscious. Several others ended in trips to the emergency room for high-flow oxygen mask treatment. Eventually I was given lithium for treatment which began working within the first couple of weeks. Once the headaches were gone for about 2 months I was able to stop taking the lithium. Comforting to see a web-site for sufferers of cluster headaches. It truly is the worst pain I have ever experienced and will possibly ever experience.
Hello everyone! As bad as this may sound,it's refreshing to see I'm not alone. I don't know how many nights I sat there with my head in my hands moaning like a wounded animal thinking that nobody has any idea what I'm going through. I've been getting these lovely ha for almost 15 yrs. but for some reason this spring has been hell. 6 ha a day and each one more severe than the next. Last week while I was in the middle of a wicked attack, my wife begged me to see a doctor. I've done this in the past and all they did was perscribe muscle relaxers which didn't work. This time a doctor gave me Imitrex nasel spray, and I must say that I think God himself must have made this stuff! If you have not tried this stuff you MUST!! I swear this stuff is for real!!Trust me.
15 years of CH and finally finding others know what it feels like. I've already had the second one today, May 7 and this episode started Jan 6. Prednistone stopped it for two weeks and guess what, off we went again and am trying pred again now but this time it doesn't seem to be working, i dread to think whats next if this course fails. My doctor doesn't have a clue, prising the immigran injections out of him is like asking for gold dust - he doesnt understand that without them CH sufferers are vulnerable, scared and dreading the next one!. Without the injections i couldn't even go out, let alone go to work, but the constant washed out feeling never leaves you when your'e in a cluster and this one seems to have gone on forever.Best wishes to all fellow sufferers, lets hope for something NEW in the future,
Dave.
I will be 42 yrs. old this month, i first started having
my "Headaches" when i was 29. everyone told me i had a sinus infection. I went to a specialist, and he said "sinus"
also. He humored me with a trip to the outpatient Hosp.
for a M.R.I. And prescribed meds for a sinus infection.
After 3 weeks of the unbearable pain, i called my G.P.
and he diag. me w/migranes... thirteen weeks later they stopped. No meds helped. Two tears later again the pain in my left eye, as if someone was driving a drill through my pupil, until it took the whole left side of my face, rolling, thrashing, howling like an animal...My Doctor then informed me it was clusters i was suffering from. He has tried predisone, lithium, pain meds, nothing has stopped the cycle. Every 2 or 3 yrs in the spring, they begin every
evening 1,2,3, times a night. They last up to 13 weeks.
My Cluster started again last week. I have had an ambulance
at my home 3 times this week, the first 2 times, they gave
me oxygen, and the cluster went away in minutes, only to
return again later that night. The 3rd 911 call, i took the trip to the E.R. The ambulance driver radioed to E.R.
"well she said she has clusters?" as if not knowing or believing me. Then when i was in the E.R. the nurse said
to another nurse. "She says there clusters? whatever that is?". 25 mins later the doctor showed up (because he had more important patients) "whooping cough" He realized the severity and started an I.V. and it took 5 different shots
and 2 more episodes. to relieve the pain, 3 hrs in E.R.
and these medical professionals had no clue what a cluster was. I was crying when the E.R. doctor confirmed he knew i was suffering from clusters. Finally someone believed me..
I was sent home w/a oxygen tank. and 2.5mg of Zomig. I still
have my clusters and nothing helps.The pain is unbearable, and i can not function like a single mother raising two children alone needs to be. I have no one but myself, and when they can't count on me, life as we know ends for months. I have oftened wondered, what did i do so bad to deserve this cruel curse. i am beggining to feel bad, so i will sign off...
I found your website in the middle of the night, when I thought I would go crazy with pain. I had taken just about everything I could find in the medicine chest from ibuprofen to endocet and finally 2 ativans, which finally gave me some relief.
I have been having these headaches on and off for the last few years and just thought they were regular migraines. But over the past month, they have become intense, with the right side of my face in spasms of pain, my nose stuffed, my eyes running, and even my hair and teeth hurting. This week, every night I have been awakened every 2 hours or less in pain. I am exhausted, depressed, and frantic.
Last night, after taking a second ativan, and falling asleep upright in a chair I did get some sleep. But today I have been so groggy I can't do anything. Tonight I will sleep in the chair again as I am afraid to lie down, and I will also take 2 ativans. I know this is not a lopngterm strategy as I am totally wiped out the next day.
Your website made me feel that I am not just a "baby" complaining how much "it hurts". But, I am also frightened because it seems that there is no obvious way to deal with this hell!
Thanks for listening.
Bill Milling
I'm a 27 year old new husband & father, and the hardest part with dealing with the headaches is the time I'm losing with my family. I don't want my baby girl to always have to be hushed or taken to a different room because Daddy is in so much pain.
This is all new for me. I have been luck to be free of headaches untill just about a year ago. I've never experenced pain of this magnatude before (and I've had to kidney surgerous).
I just have to remeber what is important & keep looking for what will make me better.
My son has had ch for almost 10yrs and is now going thru them now there is no let up. He was in the hospital for over a week and still has them and has tried every medicine you can think of and nothing. He has lost everything he had yrs ago he changed his lifestyle nothing helps. I never new so many people had ch. Why then can't they find a cure for everyone?
When I first started having my cluster headaches; most people were treating me like I was faking. I couldn't understand why I was being treated that way. My employer kept telling me to just take pain medication. Most of the time they just thought I was trying to get out of working. When my doctor finally had me see a neurologist in my area who specializes in headaches; I thought finally someone who will be able to help. Dr. Eichelman asked me questions and was the first one to put a name to what was afflicting me. She was the first to understand just how dabilitating these headaches can be. I have times where I am nauseated and see double. I at least know now that I am not going crazy. Does any one know what there is for information to give to my employer? Employers just don't seem to understand.
hi- has anyone ever been misdiagnosed as having a virus, or can cluster headaches be triggered by a virus? i was beibg treated for a viral infection, that was never able to be pin-pointed, they were only able to "rule out"- such ad hepatitis, mono, fifth disease, CMV, Dengue fever. it ladted 2 wks. and began with fatigue, dizziness, joint pain, and went on to joint swelling- especially the fingers and hands- and mild headache above my eye- and then the excrusciating, sharp shooting electrical debilitating "bout" of pain above around eye, ear and back of head that no pain pill, compress, or position could eleviate until it went it's course- then some relief, and then to start up again for a few hrs. then bearable pain that i could get some sleep with percoset or ultraset until i was awakened by nightmarish dreams of pain- this went on for 8 days. when my hands were so swolllen that i couldn't bend my fingers- my dr. put me on steroid- prednisone for a few days and that got the swelling down- i have a high threshold for pain- but i never felt pain like these headaches- no migraine, ren wine headache- not even chilbirth or a ruptured appendix-woke up one am and finally felt better _ that"s when i started to look on computer and found this site_ so i"m not diagnosed< but your descriptions are very close to how i felt_ and i don"t think that i was being understood as to how severe the pain was_ did anyone else have a similar experience? thanks for your help_ ricki
Your site is very useful and nice designed. Greetings.
this is a great place,one of my new "homes" on the net. Thanks to all of you!
hi my name is Mark i'm 31 y/o and a cluster sufferer--i'm so GLAD i found this site--please email me--would like to chat/email other clusterers--Thanks. Mark
my headaches started while i was driving truck. i passed out while helping a lady change a flat tire. doctor told me not to drive any more. ran lots of tests to find the cause couldn't find anything diagnosed me with cluster headaches. i'm on medications that help sometimes or they give me shots that last up to three days.my headaches last sometimes a day to days at a time.i thank god there are others who know how the cluster headaches feel and have a support group to talk with when others don't understand how they feel and how painful they really are.
Began having cluster headaches in 1991 after moving to Northern Virginia. I was 38, no family history of headaches and it took about 2 years before I was diagnosed with cluster headaches. They have worsened for the most part and am now having them almost daily; sometimes two a day. Am currently awaiting new medication (time released Lithium instead of the 'regular' Lithium) and sure hope it works. At least Imitrex makes them go away but I hate the bruising I have from the shots plus hate taking up to 4 shots in 1 1/2 days....But what can ya do?
Their back!
Cured!! Got your attention? I hope so. While in the Army, my CH's started in 1982 while stationed at Ft. Lewis, WA. I retired in 1990. Went to work for a friend doing Landscaping. In 1994 I pulled a muscle in my back. Got talked into going to the Bosses Chiroprator. While discussing my back problem, he asked if I had any other problems. I mentioned my CH's. He asked me to let him take an X-ray. I need to mention that before this day, I have been to many Dr's, an even a Headache Clinic. All of which said, "no cure at this time, but oxygen, and some medications help". Anyway, he took the X-ray, found my problem, he felt. He did one painless adjustment, told me I would have one more bad CH, and that should be it, if it works. IT DID! From that point, I have not had one CH till my darling daughter gave me too hard of a hug good-bye. She wrenched my neck, and now they are back. Problem; I can't find anyone around here that will listen to me. I know my cure, but since there supposidly is none, all the Drs, and Chiroprators have their minds made up, that I don't know what I'm talking about. So, I have to wait till I move back to Washington.
Boy, I could make a lot of money selling my cure, knowing it would help some others. And, I could use it! Just can't find it in my heart to do that, so here is what he did; He X-rayed down threw the top of my head and found that my spinal cord was pressing up against one side of my skull, right where it enters the skull. He laid me on my left side, and pressed his thumb on the right side of my neck. That's it! Now, if you can just convince YOUR Dr, or Chiropracter to check and see if this is your problem, it just might help you too. If you do, and it does, just thank the old man in Washinton in your prayers. Good Luck!
After dealing with attacks and episodes for 26 years I've finally found this site....Am in the middle of an episode now ,before this one have been free for about two years...Haven't had any drug treatments at all (except when they first came years ago)..nothing worked so i pretty much have remained drug naive.....hope this time it will pass pretty quickly.......
They ARE BACK :-( Hi everyone, I am 33 and have had CH since I was 19. The first ten years were like clock work - twice a year lasting 2-4 weeks 2-4 per day. They decreased the last few years to once a year, I even had a remission last for two years. Now they are back and with a vengeance, I am on my fourth week, 3-4 per day. Nothing realy helps mine. Glad I found this site.
I an am 35 years old and have suffered from Chronic Cluster Headaches since I was 17. For numerous years I had no relief and then was saved by the use of Stadol Nasal Spray. As bad as I hated to use it, it was not nearly as bad as the pain. However, my headaches are suddenly becoming resistant and I am so depressed. I am really excited to find this site. Thanks for the info!
i was just diagnosed with cluster headaches. i had an appt. with a neurologist for carpel tunnel. took 2 months to get the appt. between the time i got the appt and went, cluster headaches started. at first thought it was a sinus headache, then thought it was a toothache, after the 3rd headache, knew it was something totally weird. the pain starts pretty fast, in the right side, pain in my right eye and my ear feels like it is on fire and my upper right jaw feels like it's going to explode. the dr said these were classic symptoms of cluster headaches. they last for 20-30 min. i feel lucky. i've had about 15 in the past few wks and am hoping the cluster is thru. dr. said to call him if they start coming back and he will precribe something... oxygen was what he recommended. breathe it for 10 min and it will help get rid of that headache. by the time i'd get oxygen ready and breathe it, the headache would be gone. it's hard to believe that you can hurt that suddenly, and then for it to be gone that suddenly. i feel for you that have them so often...... god bless us all.... whew!
My name is John and I have suffered from cluster headaches for about 14 years. I am a 39 years old and I do smoke about a pack a day. I also drink beer very freely. I personally do not believe that that causes the episodes but during a cycle, 1 beer will mean extrodinary pain. I was not properly diagnosed until about 7 years ago. Before then I had teeth pulled and was given allergy medicines. My headaches usually start in April or May and return in the fall. I usually have little signs a week before they start, such as anxious feeling, tingling in my face or just an boost of extra energy. Once they begin I can almost predict the time of day they will strike. I have tried different medications none which have prevented the headaches. I had been almost 2 years since my last headache but last week they came back out of nowhere. My doctor gave me a six day supply of steroids (prednisone) to try. I think they may have helped. I started the treatment on my 3rd day (Thursday) of level 10 pain. Saturday I did not have a headache all day, but Sunday I have a good 3 hrs of intense pain. I believe the steroids have dramatically reduced the pain and cycle lenght. Hopefully this information can help someone else try this as a treatment, because noone knows the pain like we sufferers do. It is horrible. I have read a lot of peoples experiences and I can relate.There has to be a solution to these disabling headaches and hopefully a more effective treatment or preventive measure is right around the corner.
Great site!!!
i have had ch since 1985 can anyone tell me will this ever stop? does dehidration play a part in bringing on the cycle?
I have been suffering from cluster headaches since I was 11 years old. They totally take over my life for 3 months and being a mother and a wife, it just makes it that much harder. I am so happy to find a support group where I am understood and don't feel so alone in my quest for knowledge on this subject. Thank you!
I have been waking up with a migraine headache every day for the past 4-5 days. I am currently taking the following medications for my headaches: Topamax, 150mg and Effexor XR, 150mg daily and Imitrex, 100mg at the onset of a migraine. Any suggestions for breaking this cycle?
well its been over a year now since i had my last six weeks of hell,3 to 5 times a day.when i ended up seeing a specialist after 4 weeks i found out what i had, he said within 15 seconds of seeing him that it was clusterheadaches.
he introduced me to deseril 3 times a day and for when attacks came on it was imigran nasal spray to the rescue. it killed the headache within 30 seconds.
despite a couple of hospital visits,in which i think they may have thought i was crazy, the best they could come up with was migraine and sent me home.
my local doctor came closest who said it might be tri-genemal neuralgia,but some of the symptons did not fit.
he suspected clusters but was not sure,he had never seen somebody suffering clusters before,so he sent me to a professer who diagnosed the problem straight away,he gave me a couple of options for treatment but thought the deseril imigran combination was the way to go,althogh taking the both of these together has some seriuos risk to it.being that i am 35 he thought my age and fitness was on my side and took the risk with myself and my wife(intensive care nurse)monitoring how they went.they worked fantastic with no side effects.
its been a long time now since my last clusters(nearly 2 years) and i hope i never see them again.i sympathise with other sufferers as i have not known pain like it.
todd(blue mountains,australia)
Hello to you all.It is 2.30am and i have just had my early wake up call(you know the one that starts at the point of no return.)Two years ago this would have been a poss couple of hours of hell,but after going to The Institute Of Neurology in London and seeing a cluster headache speacialist (I ADVISE EVERY BODY TO SEE ONE NOT JUST A DOCTOR)i now inject myself with IMIGRAN SUMATRIPTAN SUCCINATE and this normally will kill the attack in about 5 mins (one hell of a diffrence)he also told my doctor to provide Oxygen and mask with flow rate of at least 10 lts.This has been good on attacks during the day (the ones you feel building up slowly)and will often stop them.With ref to the IMIGRAN a lot of doctors may not sugest this due to cost so ask them about it.
I hope this info may help somebody
MARCUS.
i would like to know if your eye will ever open and go back to normal.I was just told i have cluster headaces. I AM IN MY 4TH WEEK. pLEASE E-MAIL ME AND LET ME KNOW ABOUT ALL OF THIS. THANKS
I was just diagnosed today with CH. I've been reading through all the messages and quite frankly, am feeling a little sad. I had hoped that this was just a temporary thing, but from what I've been reading, it looks as though I'm in for a long haul. It does make me feel better though that there are a lot of other CH sufferers just like me. I had a long chat with my husband (my best friend) and he has promised to be my major support through all of this. This headache I have right now has lasted 9 full weeks. I have slept very little. I work all day at a full time job and sometimes find it hard not to just stop and bang my head on the floor. I have decided to try and live as normal a life as possible, if it is possible that is. I have been a fighter all my life. I am 51 years old and have beaten cancer twice. I will not give in to this...I will fight this with all I have. Wish me luck.
This is great site. I haven't been following up on clusters for about 5 years because I haven't had any. Well, guess what. They are back. Started about a week ago and today I was shocked to experience the headache move from my left side to my right side. I have had clusters for 30 years and they have always been on my left side. What's up with that? I was hoping that I would never get them again but I guess that was wishful thinking. Oh well.....it could be worse. Now for a dumb question. How do you register for this site? I can't figure it out.
hi to everyone especially to Jill!
i don't have CH's but this page gave me some insight into what a person goes through. Jill, you have made it this far. i hope things will get better for you. never surrender.
I have suffered from CH for about 30years. It may sound over simplistic but, believe it or not, I get relief with Vicks Vapor Rub. I fill a tea spoon with about 1/4 of Vicks Vapor Rub and heat in up over the stove flame. After it melts I inhale the fumes very slowly and deeply for about 2 mins. It either eliminates the pain or reduces it to a tolerable lever. Simple yes, but it works for me. Good luck and God bless you all.
I used to think I had clusters and then I talk with a guy who said something to me. You see I am an alcoholic and have been so long as I remember. ANyway this guy, he tell me that there is another name for my particular form of headache, he calls it "hangover". Now I don't know anymore becasue I think for years they were cluster. I found this place and thought maybe there was sympathy for my problem, but now I wonder is it because I drink to a stupor then I don't know why? Please if you can help me understand better. I am a hyperchondiak and take pills for everything every day. If someone I know has a mosquito bite, then mine is bigger. THere is no help for hyperchondriak like me, I just keep hoping though. But I can't find it in me to accept responsibility for my own actions in life so here I am. And maybe that is why I get these clusters after all, or at least I think I get them, or are they really from my drinking? Thanks for listening to my sad story. My daughter disowned me becasue me and my wife (her stepmother) turned her against her own mother and now her mother is dead and she can't make it right. Can guilt cause these clusters or make me drink like this? Maybe they are connected so let me know if you have any ideas. Thank you again,
Bill Truett
Desert Gold
Yucca Valley, CA
Hello all. Last Sept.(2002) I went through an episode. the first since Feb. 1999. Like others have said, they are getting worse. the pain at one point was so sharp it was literally like a blade in my head. I never knew that a person could suffer such an intense pain. (and I have had a tooth ache before) after seeing a Neurologist (spelling) I have been diagnosed with sleep apnea. Unfortunately I cannot afford the CPAP machine too treat it. Docs tell me the apnea is the root of my problem. I have found that a good dose of Demerol and Phenergan will knock me out. For some reason this time after sleeping four hours or more I woke up without the pain. But of course it would come back
the next night. This was the first time I've had the CH's at that time of the year. always before its been between Oct. and March. By the way, my G.P. told me that Immetrex
can sometimes worsen a CH. Boy can I atest to that. the only time I've taken it I was in the E.R. at the time and ended up being sedated. Just give me the Demerol/Phenergan shots and nobody will get hurt. I hope and pray for an end to this horrible pain for all of you now suffering and those of us dreading the next one. God Bless!
My husband was diagnosed with chronic headache....i never heard chronic headache before.....before he was diagnosed i thought it was just an ordinary headache and i ignored him i told to my self that he's just acting to get my attention..but now that i found out that was rare condition..i was scared and i don't now if i can handle the next scenario...i'm glad that i found out "U" (this web)...i know that i can learn a lot from all of u and hope to hear something new in the future...see u then
Hey All, I'm just finding out I am a cluster sufferer, a lot of er's there. I'm 46 next month. I had my first migraine when I was 22. I had my first cluster ten years ago. The next was five years later. Then about eight months ago and now I'm two weeks into an episode with one day pain free last week and today so far is pain free. I've gone to the E.R. and treated with moriphine or demiral. Excellent pain killers, but they also kill any sense of being alive. I could easily become addicted. You know that choice seems a better one than suffer through. I've seen neurologists and other specialists. I can't believe I just now read about Imitrex. I've been taking 5mg of vicodan and a benadryl tablet to stop the hedaches. That amount seems to work if I feel it coming. If it's a sudden onset I double or triple that until I feel like a can sleep. Oh yeah, this time around was the first time I've been woken from a sleep with the pain. It happened two different nights. The first time it shocked me. I took the meds, doubled, then tripled, 'til I went back to sleep. The next time I took a double dose right away. It subsided, but woke me again two hours later and then repeated the same cycle.
I don't have a clue as to why I get these. I don't feel like I'm stressed. I'm not a heavy drinker and I don't smoke. I'm kind of glad I'm not alone, but I'm sorry that there is more of you suffering. It seems it could be worse for me. It seems it may get worse. One of my daughter's friends has two or three attacks every day. I can't imagine the strength she has.
I hope they are gone for a while. Take care,
django
This is a great site! I am 36 years old and have suffered from Cluster Headaches since the age of 9. Being 9, female, and living in the "dark ages" of medicine back then, the first doctors told my parents I was faking the pain to avoid chores (same time every night). I guess I was faking the tearing, swollen eye, the nasal discharge, and the vomiting too!! ;-)) I found a neurologist at 18 that finally properly diagnosed me and started me on Indocin. I was the youngest onset in a female he had seen and used my story as a case study to show that it wasn't just "the executive headache." I had to drop out of Medical School because of lack of functionality due to Clusters when my sleep cycles were dramatically interrupted by the intense schedules. Luckily, my boss (a nationally-known Public Health scientist) is a migraineur and is very understanding. I am at the tail end of my most recent cycle and had been in a two-year remission prior to the first "baby" cluster headache (the start of the cycle) on St.Patrick's Day--and that without even drinking the Green Beer (G*d forbid!)
Thank you for this site and my love and prayers to all of you out there --may your cycles be short and your remissions long!!!!
Love, Nancy
congratulation to this excellent site.
I am a cluster headache sufferer and have been for the last 10 years,I haven't met anyone else who can truly understand
After two years and 27 doctors (including 7 neurologists and the Mayo Clinic) I finally have a diagnosis! My case presented a little differently - I experience the pain as "ZAPS" - sharp electrical sensations, much like being hooked up to a cattle prod - which usually awaken me from sleep - from three to thirty times a night. Having had an aneurysm in my left carotid coiled and the artery closed off five years ago, doctors were hell-bent on telling me that it wasn't the that. Yes, fine, but what was it? Probably stress, or just my imagination. My imagination? Try sticking a cattle prod in your wife's ear while she's sleeping and see how calmly her imagination takes it. After six months I developed a roaring case of fibromayalgia (could it have anything to do with a lack of sleep?) and night time had become a thing to be endured - survived...certainly not a time of rest or restoration. Depression naturally ensued, as now, a number of doctors didn't believe in fibromyalgia...and those that did sought to attribute the ZAPS to it - not the other way around. Meanwhile...pain, pain, pain, couldn't go to work...will disability cover it? Are you kidding? Then what do you know, kindly Doctor #27, a diagnostic neurologist, interviewing me while conducting a nerve test of my legs which have been hurting for 19 months), calmly informs me that I have "migrainous neuralgia," most likely triggered by progesterone given me after a hysterectomy I had just prior to my first night of ZAPS (I kept telling them that, they just smiled and rolled their eyes) and certainly due to all the stress and "messing" around that had been done in my carotid artery in 1998 with the aneurysm repair and carotid artery sacrifice. So there I am. Here I am. Two years later I find out I actually have something. But who will help me? My entire health has deteriorated - my whole quality of life and that of my family has been effected. My blood pressure is 100 over 70 or less, if I close my eyes I get so dizzy I swoon, I've lost 65 pounds and never feel like eating, I'm freezing all the time except when I'm sweating, I bust out crying ten times a day, sometimes in public places, like a 2 year old, half my hair has fallen out - not sure why, but possibly due to the topomax I take which allows me to sleep through most of the ZAPS. I take pain medication (methadone) which allows me to stand the pain of the fibromyalgia but keeps me from getting goose bumps when my favorite song is on. I understand the hypothalamus is involved. It sounds like recent research is suggesting that it is the CH harming the hypothalamus, and not a problem with the hypothalamus that results in CH as was previously believed. So many of my problems originate from that part of my brain - I'm very concerned. Does anyone know who or where current treatment or research is being done on CH? How do you LIVE with this???????
I have been afflicted with two types of severe headaches...cluster and what they term "tension" and it is the worst pain a human could experience. I have had these problems consisitently for the last 5 years. I also have severe nerve pain in my thoracic spine area so I know what pain is.....trust me. The headache pain is the only pain that will take me to the Hospital. It wouldn't be so bad if you weren't treated like a drug addict or some kind of germ. I have found that there comes a point in the headache that is the point of no return and when I get there nothing helps except immediate shots of demerol or whatever the particular hospital uses. The last time--3 weeks ago....I was in tremors too. I did manage to keep from vomiting profusely and that's a miracle....my heart goes out to anyone else who must experience these headaches. It's beyond description. My pain management doctor recently gave me midirine....but frankly I don't trust anything they give me....they just don't know and they're grasping for straws. Yes, I'm a woman who suffers from this.....I know it's unusual....but hey I ride a harley too so maybe I'm not your typical woman....good luck my fellow headache sufferers....we're all here together.
Hi all, Since I haven't had attacks in 2 years I've forgotten my Username and password so putting this here.
I'm wonder about success stories using Steroids as a preventative (my doctor put me on Depakote and it isn't working. Per what I'm reading it appears that Steroids by those in the survey found it to work and shorten the cycle. Two years ago I started using Maxalt-MLT. This med for me removes the headache withing 10 to 30 minutes (depending on how fast I get it on my tonge. Has anyone found that Chiropractic helps them. After 30 years of this devil, I notice that the week or two before the cycle starts my shoulder on the headache side starts to ache and burn as if a red hot needle was jammed into the base of my neck. I played hard in my youth (football, hockey, and so on. I had my share of injuries and even required knee surgery. In looking back it was after my knee surgery at nineteen that I started getting my clusters. Today my xray's show that I'm a mess. Has anyone found that pinched nerves and changes in season can be a factor. I'm starting to understand my body I think. I'm going to look at arch supports to correct my step and posture. I'm thinking it might be helpful in the clusters. I'm very flat footed and I'm finding with this cycle that if I can lay on the bed with the tenden at the back of the heel resting on the matress edge, flex my feet at the arch I recover faster from the headaches. Might be mind over matter and make little sense to anyone (but whatever works for one RIGHT!)
I'm trying the water treatment now too. Object is to have a glass at teh sink in the bathroom (Out and In at the same time-if you get my drift LOL).
I would like any and all feed back. I've received some nice support during this and past cycles. For all of you suffering now, keep the faith.
Take care all
Bruce
Hi, good site visitas virtuales, imagen virtual, panoramicas, paseos virtuales, panoramas, inmersiva, fotografia 360
20 years of clusters qualify me as a survivor and expert!
I'm glad to have found a sight that deals with the most terrible headaches around.My husband has been suffering for 13 years now. It took some time before he was diagnosed with CH. We are still trying different medications. At first they put him on cafergot, worked for awhile. Just recently he has been taking prednisone and finds that they help to control the severity of the episodes. The ch usually wakes him up in the middle of the night with the pain behind the eye, then it progresses to the to the top of his head on the right side with ice pick jabbing pain. It will then travel to the temple and the back of the neck and this is when it is full blown. He just came back from the doctor (he is in a cycle now) with three more prescriptions--predisone,A painkiller and ergodryl. Hopefully he will get some relief from these. It seems most of his attacks occur during the spring which will last up to 4-6 weeks. He usually has a few of years rest in between. His last bout was in 2000. Hopefully they will be able to come up with a cure for this instead of just treatment. Take care and don't give up!!!!!
Hello
Can anyone help me?
I was diagnosed with episodic CH in October 2002. I had 53 attacks in the space of 4 weeks ranging from kip 6-10.
The doctor started me on Pizotifen which I now take everyday four times a day. Has anyone had any sucess with this? I also started the water treatment myself about two weeks into the cycle which really helped to reduce attack frequencey and pain. I am really unsure of when to expect my next attact. Could I get one tomorrow? or will it mostly be October 2003? Is it true that some people only have one cycle and it never comes back after that? Or is that just wishfull thinking on my part? About 2 months ago the doc gave me SUMATRIPTAN and told me to use when I had an attack. I have not yet had an attack so have not tried it yet? Does it work? VERY SCARED!!! My doc wont give me oxygen. Anywhere else I Can get it so that I can give that a try.
Please someone answer me.
Feeling very ALONE
Thanks
Michelle
x x x x x
Has anyone had sucess with using PIZOTIFEN to prevent CH attacks? I'd be really greatful for any feedback.
Michelle
x x x x
Im 53 yrs old and had my first attack in 1982 , had them 6- 12 weeks every 1-2 yrs. My last bout was 5 yrs ago(6 months) and now they are back.... The pain isnt as bad as it was in the past 5 out of 10 but I sure dont have the strenght to fight them..Ive been trying Imatrex nasal spay but it dosent work at all unless I take it at the start, I mostly get them at 2;50am and then at 5;30 if I get back to sleep.The injections work the best but very expensive,, $62.00 a shot. That sure adds up after using 2 a day.
Im not getting much help from the Doctors(now isnt that a suprise)They give me the impression that they can only spend 2 minutes with each patient, pretty frustating ...
Ive tried prednizone in the past and it worked great,no sleep required I ate like a pig, gained 10 pounds in 2 weeks and was just a wee bit mental.. Ive never had fits of rage like that in my life,, so thats not an option this time around.They seem to think that I have sinus problems that are aggrevating the attacks but I think its the clusters that are aggrevating the sinus...Its day 18 now,, Ive missed a few days off work already so it looks like I will be gone from this job soon...
Any ideas on what I can take for preventive therapy would be greatly appreciated.
Have a Great day- Wayne
i had ch for 12 years and finally found an md that prescribed procardia. it worked. no more headaches. that was 8 years ago.
Hi everyone. I´m a 22 years old young man and I´ve been suffering from cluster headaches for 5 years now. I think that a site like this is very helpfull for everyone who suffers from this terrible headache.I was very glad to read coments from other people around the world who knows exactly how horrible it is when we´re having a attack. Best wishes for all of us.
BEEN A SUFFER OF CH FOR THE PAST 23 YEARS.IVE DONE IT
ALL//////// TODAY I HAD GAMMA KNIFE SURGURY AT COLUMBIA
HOSIPTAL IN N.Y.C., PRAY FOR ME PLEASE,MY STRENGHT
HAS RUN OUT THE PAIN IN MUCH TO MUCH.RICH
Hello. Im a 37 yr old M and have been suffering with chronic CH now for 4 years. Have had one sinus operation already but of course it did not help. When I had insurance I was on several antidepressants, none of which helped. Topomax seemed to help reduce the number of HA for a couple weeks but then it went back to normal. I get 1-3 per day. Every once in awhile I go a day or two without one but then its back on the ride. Imitrex injections work great but the V.A. will only give me 4 per month at the moment and my new insurance wont kick in for another 30 days. Cant imagine how some of these people have gone 10-30 years with this problem as Ill never make it that long. Ill definatly try the imitrex tip to extend my supply and will see if the water tip helps as well. Thanks for the great site!!
Am I cured? I sure hope so. I started getting clusters when I was seventeen years old. Really severe cycles, but may go a year or more without one. Just when I think I'm over them the Demon plays his tunes. I'm now 55 years old. My last cycle was almost two years ago. The cycle before that was 10 years earlier. Boy did I think I had 'outgrown' them. Then out of the blue, wham. One of my co-workers has clusters and he recommended his neurologist. He put me on 7 liters of oxygen. This was the first time I had tried this therapy, and although it didn't completely get rid of them it did help me cope. I really hadn't found anything else that would help much. One doctor did give me Percodan but then I felt like Dopey with a terrible headache. I did read somewhere where some do outgrow the headaches. With a 10 year stretch and now a 2 year stretch I'm hoping they are gone forever. No one who hasn't had one can ever understand what we go through. I hope for everyone who has these that there will be an effective cure and/or preventive measures that can be taken. Until then, everyone has my deepest sympathy, understanding and compassion. Here's to kicking the Demon right in the ba--s.
My name is Casey and my husband has been suffering with cluster headaches for 9 years now. The past year they been getting 10 times worse than they ever have. I am desperate for anyone who knows of a migrain center or something to help. We have been to so many different doctors who assume he is a drug addict and think that he is wants pain pills. These headaches are driving him litteraly insane. I need some help. He is 30 years old and we have 3 kids we both work and we have insurance. He is not addicted to any drugs. He gets 3 to 4 excruciating migrains a day.
Hi. I visited a nerologist for the first time today. He told me that i have what is known as cluster headaches. From reading the website, it seems as though i'm one of the lucky ones. I can act fairly normally when i'm having a headache and i've found that the best remedy for me is too just lie down in a quiet dark place for 30 or 40 minutes. The Doc prescribed some Imigran tablets for me, but i haven't needed to take one yet.
I shall read the information on the website with great interest.
Perhaps someone knows if there is an Australian support group, or even if there is one in Sydney! Could you email me please ?
I didn't know that this forum exsisted for people like me I think it's great. I'm 48 years old and have suffered with yearly cycles of headaches since I was 17 years old.They last for about eight weeks and hit me hard every night,and sometimes during the day. When I was younger the doctors thought that they were re-ocouring sinus infections and put me through some very mid-evil treatments.I've tried so many drugs that I can't remember them all, one of them even turned my toes blue.I'm sorry to hear that there are so many other people that suffer from this, it's a pain that I would not wish on any one. I have though found something that is working for me at least for now. I was up late one night with the beast and got thirsty so I drank a coke, to my supprise 10 minnites later the pain was gone. You know that the next nignt when it hit me again I did the same and had the same results.I'm 30 days into my cycle and for the last 10 days I've been controling the beast with cafine. On the nights when I can tell it's going to be a bad one I take excedrine along with the coke for a little extra help and it works. It might keep you awake but whats worse ? the pain or less sleep.
Hello I am a 22 yearl old female. On October 4th 2002 I experienced the worst pain in my life going through my head. I was at a bar with my friends and the first thing I thought was tht someone had slipped me drugs. I got very disoreinted, dizzy and confused and was vomiting everywhere. I told one of my friends to cal an ambulance and that is the last thing I remember. I went to the hospital and they told my parents I did not have a good chance of survival because I had a hemmorage of a gian aneurysm in the basil of my brain stem and they did not know of any Dr. capable of doing that sort of aneurysm surgery. A luck of the Lord Dr. Troy Payner said he had done one in the past and he would do mine, bur I had the chance of being an invulant and never being able to take of myself again but my mother did not care and went for the surgery anyway, I am glad she did. After surgery I had a mild stroke and became paralyzed on my right side but thankfully it was only temporary. After 1 month in Methodist hospital I went to RHI a rehab hospita, there I learned to wakl, swallow and take care of myself again. My throat was paralyzed so I had to learn how to swallow again and let me tell you I eat like a horse now. I couldnt live with a feeding tube I think that is the part I hated the most. I finally got to go home. My mother and grandmother took care ofme for a few months and now I feel as good as new. The only thing I have problems with is my right eye it is still paralyed and I cannot produce tears so I am under very intensive eye care. That is my stry and I enjoyed sharing it with you Thak You Dawn Monday
It hurts like hell........
Every 3 l/2 to 4 Years, 4 to 6 weeks long.
Every night about 8pm to 10pm.
Right eye and head.
Help.
2 weeks down and four to go...............
this is first place i have found on clustrs. my 10 year old daughter has them for 2 months now and i can't find anything on children. she's been in 4 hospitals and nothing works, she is on hosp. home schooling. its been really hard and i haven't found any support. didn't know children got them as i never did, thank god. we just try to somewhat go on normal life but it gets bad at night. taken her off all drugs as none worked. stressed out to max mom any comments would help
Cluster and migrane headaches according to doctors, never a let up for 13 years. I have a constant bad headache with episodes of extreme cluster type headaches. I have tried many differant medications that didn't work and now survive on straight codiene with T3s for breakthrough.
This still does not take away the pain. Any ideas?
Dave
This site is great, but it has made me realise how lucky I have it, and that is obviously a hard truth to deal with in the middle of a CH. I've suffered through them once a year, daily for about 3 weeks in the spring each of the past 9 years. Now I am going through it again, though I won't complain. Instead, I'd like to pass on a couple of things I've noticed this time around. First, a couple of weeks before they started, I thought I was going blind. I have extremely good vision, but for some reason I felt like I was going cross-eyed when I concentrated on a book or other object, then it passed. I guess I will have to wait until next year to find out whether it was a sign of what was to come. The second thing I have noticed happens while I try to sit still and just absorb the pain, if that is possible. I have started to test how long I can hold my breath (don't worry, it doesn't make the pain any worse, what could?). I reached two minutes on my second try. It was incredible knowing that the pain in my head could make me forget completely that my lungs were ready to burst. I only wish that this heightened level of concentration could be put to something more useful. But, of course, you can't do anything useful during a cluster headache. My sympathies are with all of you.
I've had groups of headache's for a long time now, I was unaware that the term "cluster headache" could apply to me before to-day. I've had a headache every day for the past week, sometime's I've a couple in a day. Thank-you for being on line, it's so good to know I'm not alone.
Please help! I'm a classic sufferer of Cluster headaches over the past 14 years. A few years back, I discovered "Sansert" which almost works "instantly" in my case. Much to my horror, I tried to re-fill my prescription recently only to find that N0 ONE in the Chicago area seems to carry Sansert any longer. Does Anyone have any idea of a pharmacy ANYWHERE in the country that can still fill my prescription? Thanks so much for reading this! I've never been more scared in my life that I'm going to have to go back to a life filled with that killer pain again. btw, no other medication, and I've tried them all, works at all.
Thanks again! Paul Hendershott
pjhend@ameritech.net
thanks,and i thougt i was alone.
IT'S GREAT TO FIND THIS WEBSITE.I HAVE SUFFERED FROM CLUSTER HEADACHES SINCE I WAS 28,I AM NOW 48.IT'S COMFORTING TO SEE OTHER PEOPLE HAVE SIMILER STORIES AS MINE I HAVE BEEN THROUGH TONS OF DOCTORS SOME GOOD,BUT MOST DON'T LISTEN AND WANT TO EXPERIMENT WITH DRUGS I'VE ALREADY HAD AND DIDN'T WORK,SOME TRIED TO KILL ME ME WITH IMITREX I HAVE HIGH BLOOD PRESSURE AND ONCE PASSED OUT FROM THE PAIN IN MY CHEST WHEN THEY GAVE IT TO ME.THE ONLY THING THAT HAS ALWAY'S WORKED FOR ME IS DEMEROL AND PHENEGREN.
thank you for this very informative web site,it will surely help me better understand the monster...
I have been suffering with cluster head aches for 15 years. I use Imitex injection. I'm in s cycle now, and it is one of the worst I have had....I hope someday they go away, but I know that may never happen.
I've had clusters since I was 28. I am now 53 and have finally found relief. No - I'm still alive. I was started on 20 mg corgard, 1 twice daily, on 23rd of Dec. 2002. I haven't had a headache since 28th of Dec. 2002. I take 1 a day until I start feeling "pingers" then I go back to 2 daily. Please post this where it can be viewed. Hopefully it will help someone else. I have had my hopes up before so, I have held off writing just to be sure. Thanks and good luck to all sufferers.
Extremely pleased to come across this site,the time is 4.30am and my caring wife and i are yet again sat up while i suffer another attack. I have been to my GP several times with this and have been given several different medications the most recent being gabapentin 300mg but this does not seem to be working,and i am still climbing the walls.since looking for cluster headaches on the net i have found that the most common (or should i say the best medication) seems to be verapamil and oxygen as you can guess i will be contacting my GP ASAP to ask him for these treatments. Thank god i am not alone thank you for your site and thank you for your help already. Rob
Hi all, I'm back. After 2 years of being attack free my attacks have started again. Not bad now but I know by experience that the start is easier to deal with then the month or two to follow. I was hoping at almost being 50 the doctor would be right and I would not have another attack. 30 years of this devil sucks! I can honestly say my family is not looking forward to it either. It seems like it was only yesterday when they almost had to rush me to the hospital while on vacation because one attack lasted 6 1/2 hours before ending, only to see another hit within 3 hours. My last bout with this thing last 3 1/2 months and I'm worried that this has become the norm rather than the exception. I'm hoping it will be a little and quick time period this time. I'll be in touch.
Bruce
congratulation to this excellent site.
I was diagnosed as having chronic cluster headaches. I had them all the time, not in clusters. Always the same symptoms -excruciating pain behind the right eye, congestion in right nostril, watery r eye and drooping r eye lid. NOW IM CURED. I was misdiagnosed. I always pointed to my right jaw joint as where the pain started but the neurologist said it was referred pain. I went on my own to an oral surgeon and asked himto do an MRI which they did and. lo and behold, they found the disc to be dispaced. I had surgery 8 months ago and have been pain free since. I'm 58 and my hx with cluster headaches goes back 25 + years with the frequency getting worse and worse till my surgery last July. I had years of orthodontic tx, prosodontic tx, millions of pain pills. I even had a mandibular setback in 19996 and I just got worse and the surgery caused sleep apnea and I've just had surgery to correct the sleep apnea.
In my month before my disc surgery i had 47 prescriptions at CVS. Every day I'd get 2 cartridges of Imetrex, then the Imetrex pills, also morphine pills. I was just about at the end of what I could take when the jaw disc surgery cured the problem. When I asked the dr how the MRI in 2002 compared with the one in 1996, he told me they didn't do one in 1996. And that's the definitive test! So after thousands of hours of pain, $$$$ and time i'm now cured. Maybe some of you have the same problem as I did and you should check it out with an oral surgeon.
Hi,
I started having CH when I was 18. Tried everything, but the only comfort I could find was extremely hot baths and sitting with my head in a forward bent position (hopes this makes sense). Sitting in that position really alleviated the pain. Have now been symptom free for 4 years.
What a relief to find I'm not alone, I'm 27 and have given up on doctors and started my own treatment, it's partially successful, I am in a cycle at the moment, I get a CM at about 10.00am and then again about 12 hours later as I'm getting ready for bed. When I feel the trademark sensation in my left eye (before the real pain sets in) I head to the office gym, and for a 10 minutes put myself through physical hell lifting weights (light weights until that muscle group burns like fire and then some) this for me stops the onset (Unless the pains has already started, then I can't stop it) - I do the same at 10.00pm (press up's and sit up's). I hope some else can find relief from this method.
Hello
Very nice site . I have already bookmarked it. Best wishes for You, Mike
Me
It was great to find a place where people understand what you are dealing with. I'm not alone with this horrible pain.
I recently turned 50 years old and have been a CH for the past 10 years. I am currently in a cycle that began about 2 weeks ago and usually lasts 4-6 weeks. My clusters usually begin in Oct., Nov., Dec., so this is unusually late for me. I am currently taking Verapamil, 360 mg per day. I do not take them throughout the year. I have found that if I start the Verapamil before the CH begin, then it usually shorten the duration of the cycle. I have tried to watch my body for the symptoms that teh clusters are about to start. I am right sometimes and at other times I am clueless. I usually feel flush in my face. Often times my hand and foot is very cold. This tends to happen to the opposite side of headaches. Does anyone else ever experience anything like this or even have any suggestions as to why it happens? I have also tried feverfew with little or no help. I have excellent results with accupuncture and reflexology. About 1and 1/2 years ago, I stated a cycle and nothing seemed to be working. I was taking Verapamil and depokote. My neurologist is also licensed in accupuncture and he said he has had success with eliminating migraine headaches, so I decided to give it a try. My CH stopped after one treatment and did not return until 2 weeks ago. I had also started reflexology at the same time, so I cannot be sure if the end of the cycle was due to the accupuncture, the reflexology or both together. When the clusters started 2 weeks ago, I started the Verapamil immediately. After 3-4 days of the deamon waking me up multible times during the night, I tried the accupuncture. I went 4 nights without a headache before the demon returned with a vengence. I had 4 heachaches during the night, followed by 3 the following night. I then tried the accupuncture and reflexology and have gone the past 2 nights without the agonizing pain. I want to thank my wonderful wife for finding this fantastic site and for her love and support during these very excruciating times. I would not be able to get through all of this without her!
I've been suffering from cluster headaches for about 15 years now. My brother turned me on to this site. Its great to have found a place where other people know what is like. Thanks for being here!
My devil has returned after about a year and a half vacation(sure didn't miss him). I just found this site, and it is great to know that someone (besides my poor wife) understands the horrible pain associated with these demons..
Great site!! thanks, and keep up the good work, and good luck everyone...
I have had many years of dealing with this.Seem many doctor"s taken many different drug"s and had nothing work is there anyone who can help me to get this over with.Any sigestions to geting these out of my life and still haveing one?
I am sorry to say I'm back. I have checked in periodically hoping against hope that the demon would not return to my life. I've been free of it for a year and a half, seems to go that way, twice a year, than skip a year, then twice a year again. It always starts the same, the shadow wakes me up at 4 am and it has started again. I'm still in denial, hoping it's just my imagination, that maybe my mind is just playing tricks on me. Mine start off slow, gain intensity over 3 months to where I'm on the brink of just wanting to end it all, then they disappear like magic. It helps so much just being able to share with others who understand.VJ
I am starting a cycle. I have been getting them about every two years for about two weeks and usually two a day. One after work and one at night.
I used to work as a SCUBA instructor and I had access to oxygen with a demand valve regulator which worked great. I am now a school teacher with HMO insurance and I was told by my doctor that oxygen would be difficult to arrange for me to have for personal use. Translation: It is too expensive.
I remember a time while I was employed as a SCUBA instructor in the Cayman Islands and was in a cycle. I had a day off and did not have access to O2. I decided to increase the partial pressure of oxygen by descending into the water on scuba to try and get my oxygen fix. Every thirty three feet the amount of oxygen (and nitrogen) you breathe doubles triples quadruples etc. while breathing compressed air. I was alone diving a vertical wall that descended to 6000 feet or so. At two hundred and thirty feet I was still weightlessly writhing in pain screaming through my regulator in the cold darkness. I don't know what kept me from continuing my descent until the euphoric arms of Oxygen toxicity gave me freedom from the pain. There must be a God
Just spent the last 2 hours on the site. Glad to know I'm not the only one who thinks he's going mad, and that my wife is the only one who believes me.I would love to develop some form of helmet, to give to my doctor to replicate what I go through, so that he would then understand how much ''have you taken pain killers'' pisses me off. Why is it that there seems to be very little recognition or cure for this. I have hit my head with a meat mallet because that pain was 'nicer'. I may be Irish, but I know I'm not stupid.
Hi I've just found this site and been reading now for a hour or so, its really good to read about other suffer's its really good to know I'm not the only one. I'm getting myself ready for my CH's they come round about May and last for most of the summer. I can't bear it,its always a fight trying to get people to understand, my CH's start about 9:00 in the morning Tuesday's and Wednesday so i'm at work for half an hour then have to leave i know they don't believe me even though my left eye is closed and blood shot, tear's runing down my face,It's just a headache we all suffer from them. Its good to know that your all out. My God be with you all
Hi fellow journeyers of this horrible path of pain. I am feeling the niggling beginnings of an oncoming cycle that tells me I don't get to get out of my Spring episode. I am strong at the moment, knowing that I will survive it (I have for the last 25 years) but I'll post again after the actual attacks have started and I won't sound so positive, I'm sure. It is so great to have a site like this to feel the camaraderie. You are in my thoughts. Try to hang tough. My helpers: Ice pack if you catch one at JUST the right moment... otherwise, rubber gloves and the hottest water your tap can run, anacin, oragel to numb your gum where it "feels like" it's coming from a tooth, deeeep breathing while moaning in pain (like labor, well -- isn't it??) and a LOT of pacing and/or rocking. Mine have a mind of their own, never know when the pain will end. In my early days, it always lasted just 45 minutes. I would happily pay money for that now!! Anyway, anyone that wants to share horror stories, feel free to email me. Til then, good luck and God bless. Nanci
I've suffered from CHs since I was about 15, off and on, I've had two episodes of long duration with the kip scale at 10. I have been activated in the national guard since
01aug02 and have desprately been trying to find a physiological cause or trigger so I can stop the pain and maybe save my wallet a bit (I put my head through the windshield of a humvee during an episode and had to buy it). As far as meds go you name it and i've givin it a shot
as long as its been mainstream meds I recon. Zomig seems to work but I would give anything not to have to be dependent on meds forever. They've looked at my teeth; hacked up my sinuses fixed a deviated septum; but after three months of freedom It's just like an old evil evil friend he is back again. I'm going to schedule a visit with a neurologist to make sure everything is firing allright. deos anyone have any suggestions for who I should see while I'm on active duty and uncle sams catching the bill. please help!!!!
two days ago, I was awake by the first crisis I had in 4 years. I took an Imigran tablet (first time I am taking this medecine) and went back to bed hoping for some relief. It did come after 20 minutes but in the morning, I was so drowsy I couldn't drive to work, I called in sick. I live in Morocco where Imigran injections does not exist. I feel so tired today and my colleagues are so kind to me. They compare Cluster Headaches to the migraines they get. I tell them, I don't wish on my worst enemy. My mother did really go through hell when I had my fits. she suffered so much with me. I call it PP (Pure Pain!) This web site helped me a lot. I am thankful for it.
I started getting CH in 1972, the year I graduated from Marquette Univ. Dental School. In the 31 years since they began I have had 3-4 periods of remission lasting 2 years
each. I just completed a medical humanitarian mission to
Panama for 2 1/2 weeks with the AF Reserves and while I was
there I began another cycle. Probably due to temp there and
stress of mission, but they began again. I found out yesterday that they no longer manufacture Sansert which I have taken for years with great success. So I have begun in-vestigation for new med. I found out by pure chance back in
the early 80's while working at the VA in Detroit, that
oxygen worked wonders for the headaches. Some CH sufferers
say it doesnt work but it may be the way they take the O2.
I learned a long time ago that you have to take the O2 in
through the mouth and blow it out through the nose. There
appears to be a blood vessel close to the surface deep
in the affected side of the nasal passage (that is the side
your headache is on) that is the start-up point for the
headache. If you take O2 after the headache has started, and
it may have started 15min., 1/2hr, or longer , it may take a little longer for the O2 to work, but it always works. If
you are asleep and it wakes you up it could take anywhere from 3min to 15 minutes to knock out the headache. I have
taken O2 even after my sinuses on the affected side are swollen and clogged and it has been successful. It will
take a little longer though. The important thing to remember is that if you use an O2 mask just purse your
lips and suck in the O2, then blow it out through your nose.
Ive noticed when I work with a tight fitting mask such as a TB mask that if I am in a phase of getting CH that the decrease in O2 coming through the mask can cause a CH.I will
use just an ordinary nasal canula to suck O2 into my mouth,
swallow, and then bloe the O2 out through my nose.You dont
have to use the mask.I take a cannister of O2 in my car
during CH season so if I get one while driving I can pull
over and knock it out. O2 will not eliminate the CH totally,
but it sure will make your life more bearable. Im checking out some new meds that can possibly prevent them. Sansert was great because it allowed me to sleep during the night,
but there are possible side effects as with most meds.We will continue the quest for a good preventive medicine.
my cluster migraine started in 1989, when i felt a current of electricity charging my nerves on the head. then, it follows with the wringing like a piece of towel pain on the neck muscles all the way to the face. once in awhile it felt like there's a lightning rod seering through my brain. not only that at times it all comes at the same time and i felt that the top of my skull was cut open. i never use medication but i use herbal medication and eat proper nutrition that serotonin can kick in on my brain. exercise with lateral press and 5-10 lbs dumbell eases the aches mostly always, yet, at times never when its in full bloom. the best i found out is take a sip of brandy or cognac especially when the weather is really going high and low.
hello. my name is jade. i live in florida and my 40 year old father suffers badly from cluster headaches. does anyone know of anything he can try? please help. thanks a lot.
Have been a cluster patient for about 8 years, My cycles ususally last for maybe 3 months every year to year and a half. This cycle I am in right now does not seem to want to fade away. I am in the fourth month and still getting headaches twice a day, every other day, could they be turning chronic? What is the best prevention medication out there right now? Thanks
Am back, did my predizone med packs, and verapimil, at 720 mg, and lithium,at 600 mgs, two days after I was done with the predizone, the demon came back, not at full force but he made sure I knew he was there, now four days after, no more predizone, have incressed the verapimil to 960 mgs, the demon is on his way as I am typeing, has been comeing at 10;00 a m but gave me a surpise visit at 3;30 a m this morn and is working his way to a major battle, I need some kinda help, Roger
Hi again!!
haven't been here in about 2 yrs. Thought I was home free! Not a chance - I have been taking verapamil (120mg, 2 in am and 2 at pm.) and (topamax don't recall mg - 2 am. 2 pm), together and for me that has done the trick, until about 2 weeks ago - and the devil is back. I see my Neurologist in a couple of days. Not that, that will do any good, I've had these for 31 yrs.
You all have my prayers and have been in my thoughts. By the way the (kahlua in my email is not alcohol, it's my horses name!) I don't drink or smoke.
I wish you all to stay pain free. Bonnie
I have been a CH suffer since I was 14 years old,(now 39) I have tried everything under the (Drugs/O2/injections/surgeries, etc. . .) sun. My headaches were so bad the only thing that would help was a large block of ICE on my head. It was not uncommon to bang my head against the wall to help the pain. My episodes would last days, some times months. Go to bed wake-up with a severe headache, spend all day in misery. Day-in Day out! It was driving me crazy. Last year I was admitted to the Hospital for an irregular heartbeat, after 5 days in the hospital it went away, my doctor gave me Tropol XL 25mg once per day to keep my heart from going irregular. An amazing side-effect happened on this medication, my Cluster Headeaches stoped!!!!!!!!!!!!! Now the only time a get a headache are when I drink more than three drinks of alchohol or when I get a cold or the flu. If a headache does pop-up it is usually weak and only annoying. I hope this helps other out there, ask your doctor about Troprol XL 25mg and see if this could help as it has helped me. Life is great when you head does not hurt!! God Bless!!
Hi,
I'm Patrick,48 years old, living in Lille(North of France),suffering from this hell called clusterheadache.Happy to know that such a site exists.I'm now in a bad period.It restarted about one month ago.Only one thing can help me:Imiject.Bye for now.
My son was diagnosed with classic migranes when he was 10 years old. I took him to the top pediatric neuologist at All Childrens Hospital in St. Petersburg, FL. Dr. Casadonte said that in 85% of cases, the child outgrows them once puberty is completed. In the meantime, we use amdrine or midrin if it is caught before it really kicks in...if not; I knock him out with demerol. I have literally seen this boy smashing his head against a solid wood door. I asked him what he was doing and he said "This makes my head feel better" I can't tell you the tears that I have shed over this and the prayers I have said begging God to give them to me rather than him. The best solution that we have come up with once it really hits is TOTAL SILENCE, TOTAL DARKNESS, and knock out pills...demerol seems to work best...I double dose him the first time and then wake him up 4 hours later in total darkness and quiet and shove another pill down his throat; almost always, he is fine in the morning.....fluids help alleviate the pressure but it's hard to drink when you are semi-comatose. Caffiene helps also if you are able to comsume it and he is. It reduces the blood vessel swelling they say and it truly does work for my son. I feel for you all that have this affliction, Jane Bluto, Clearwater, Florida
I seem to have these "Attacks" about every 5 years since early 20's(34 now).3'rd time now:Same old BULLSHIT pain,different year.This time it's been a month.I saw a doctor the last 2 times and they said sinus infection.WRONG.
It's all too familiar.I know now that I'm not alone.Thanks for your great website.I guess I'll ride this one out.If it kills me,FUCK IT,at least it will never hurt again>
Was diagnosed w/ clusters in 1999 and been having them every 1 1/2 to 2 yrs. since.
Just stumbled (like I walk during a cluster) onto this site. Refreshing to find a community of fellow victims. I'm in the beginning of a month or more of pain - the 14 months just flew by. I'm going to try that water treatment. Good luck everyone, and God bless.
To all who suffer with these my heart is with you,Been dealin with them since i was 16 i am 42 now,Have had Mri,s catscans you name it some can put you with sweats Dry heavs (sorry bout spelling as i woke with one this am) as others right eye pain sometimes trailin to back of head last doctor i went to told my gf hes a loser get rid of him ,thinkin he could use one for a week or so, new doc, has me on midrine and covera-hs however last few days has put me on the sofa with a pillow wrapped around my head by the way eyes are blue but the brown specks are there,only postin to warn others please dont mix your meds as i had a bad spell and was takin anything to stop the pain , i ended up in inten care meds stopped my heart, since i have had to go to er for shots that have knocked me out for 2 days only to wake with a hangover , mabe someday they will figer this out ,as i hope so has cost me a job and a wife ..godbless you all JeffreyLorn@hotmail.com
taking pitzofen but found i have put on a lot of weight but it controls the headaches which i get in my right eye.
Hi All!!! I thought 2 1/2 years ago that I was done with the DEMON but last month it started back with me. I just loved the time I spent without him and so did my family. I started with a new doctor that time when the headaches stopped after she had prescribed beta blockers to me to control my high blood pressure. The doctor had to change the meds to a calcium blocker (Verapamil) because the beta blockers reduced my heartrate too much. But now the Verapamil doesn't seem to be doing its job on either front (headaches or blood pressure). I think this website is fantastic. When people ask about my headaches I will tell them to visit this site to get a better feel for what we cluster suffers go through. They just don't grasp the amount of suffering we go through. They don't realize that we just want to be left alone during a headache although my wife tells them," Just leave him" She knows! I've been lucky ..27 years with these bouts and she has stuck by me. I have been horrible to live with. The 2 and 1/2 years without the pain have been glorious for us and for my relationship with my kids. God bless you all!
Hi Everyone
I'm new to this website and am a female aged 44 suffering 23 years with episodic ch. Am in remission at present but feel reassured that there is help out there. At last I am not alone.
I have just found this web site,it is 1:00 and i am afraid to go to bed because i know the headache is waiting for me.this is the first time i can put a type/name to it.i am a 45 year old male with very high B.P.on many meds. verapamil digoxin acebutolol amitriptyline lorazepam bromazepam. I have congestive heart failure to boot. my headaches started aprox. 8 months ago every night. i found that if i do not sleep i can control them with oxycodone but i can only go 2 or 3 days without sleep, buy resting during the day. if i go to bed one hour later i have a full blown headache . I had migrgraine headaches from age 10 to 12 then again from age 30 to 33.but this is much worse I have been to my doctor many times and never asked about "cluster headaches" he think that my migraines have returned. I have not told my doctor how desperate i am when they hit or the things i have thought of doing to put a end to them.I AM SO THANKFUL TO FIND THIS SITE.and find out that i might now be able to find some way of dealing with this.but it is very sad to find out that there are other people are in such pain.I may not have many years left due to my other problems but they are precious to me and I can not live them like some strung out junkie. THANKS AGAIN FOR THE HOPE. LEN
Hello, I guess I'm a "newbie" compared to most of you. I've had CH every two hours since October of 2000. Unfortunately I have yet to find a medication or means of stopping the pain. I've tried every medication, had every type of nerve block, even had a neurostimulator implanted. I'm kind of saddened to realize that this pain may never go away. I just hope I have the courage to go on as long as some of you have. I am most saddened by the post's from people with children who have this affliction as well as the posts from children whose parents have it. It's tough explaining to a 5 and 7 year old why daddy cries and holds his head. Good luck to you all.
Have found, something that works for me. Went on lithem, predizone med packs, verapimil, . I have been in the worst cycle of my life, was ready to cash in my chips,and with the help of all of you people, and a doctor that was willing to listen, have come on this coctail. It seamed to work the first day, had a shadow, the same time, that it allways come, and it stayed all day, but did not deveolp, and now in the third day, have no sign of it at all, just can't sleep, guess its the lith, dia get a nap this afternoon, feels so good to be pain FREE. Any ? please write back, got so much help here will allways be here to help anyone I can. ROGER
Hi Everybody! God bless all of you who suffer as I do. I just turned 53 yesterday. The clusters began 33 years ago and,many thousands of headaches later, I continue to suffer. In all the years, through all the trials of an unknown number of meds and combinations of meds new and old, nothing has every truly helped. I suppose this sounds so very familiar to most of you. I'm sure you have all, like me, found your own little things to do which help, or seem to help, lessen the pain, or make the excruciating time a bit more tolerable, or possibly use it as an attempt to distract you from the agony and suffering. For the past upteen years, I sit on the edge of the bed, put my feet up on a low shelf, place a pillow on my lap, rub my head in a variety of ways with various degrees of pressure and speed of hand movement, and emit a noise that is essentially a very low, slow, long groan over and over with each long breath I try to take. For me, the average cluster period lasts 14-16 weeks, with 2 to 4 episodes daily. Average duration 60-80 minutes. During the worst time of the cluster period, they occur 2 times daily, generally about one or two a.m. and again around one or two p.m., just like clockwork. These are generally longer, often having a duration of 120-150 minutes. The only other thing I've found that sometimes helps - I pace around the house. I begin slowly, through the living room, into the front hall, into the dining room, then the kitchen, then back to the living room. Round and round I go, ever-so-slowly, picking up the pace, faster and faster, until I'm walking as fast as I am able without knocking into things and breaking up the house. Also, I breath harder and harder, faster and faster, using my groaning noise with each exhale, up to the point at which I think I may hyperventilate, but never do. This sometimes seems to help. On occasion, I've felt as though the groaning noise is almost hypnotic and places me in an altered state within which I can better tolerate the agony. I hope some of you will try this and e-mail me if you obtain a good result. Again, God bless all of you.
Dr. Bill Gambrill doktrbil@comcast.net
Hay evey one. just checking on the new people on this site. there is hope and it's this site. it's been ten years fighting the demon for me. it's sad we all have to go though this pain. but there is one good thing that has come from it. i see the light. it takes most people all there life to see it and some never do. The demon has lost in my case so keep on fighting you will win!!!
I cried when I found this website. Was it the discovering of a community, or the realization that I have to deal with this for the rest of my life. Both.
Sincerely,
Nathan
hello everybody,
I have been told by my Doctor that i am a fellow sufferer of ch.I have read your notes [not all] and i can see the simularity's.I wake up with my eye ball feeling that it has been pushed into my head while i was sleeping and my temple is the main pain area and across my eye. My nostril is always blocked and the pain is unbearable.My last bout has lasted nearly five days and nights ,my pupil in the affected area is much smaller than the other and my eyelid is half shut.I have been perscribed NARAMIG before and found this the only thing that has given me my life back .Within one hour of taking this and sleeping i could wake up and begin my new day . Before this drug ,i would lock myself away and sleep til the following day hoping that it would of gone.I realise that i am lucky to be able to sleep during the pain unlike yourselves.I have also suffered since i was sixteen , now i am forty three .Self analasis i think is related to sleep patterns any simularities?
I'm not alone?
Recently diagnosed with 'Cluster Headaches" unbelievable.
I in about my 7th week of waking up from a sound sleep by a sharp pencil being poked into the back of my right eye followed by an hour of slow recovery. When will this insanity end and how soon is it going to come back. I am now scared to go to sleep. I have been enjoying the postings just knowing I am not alone. I feel so bad for all of you suffering from this horrible condition.
Good luck to all of you. I personally would just like a good night sleep, uninterupted.
Brand New Barbara
After 18 years of cycles, ithink that I have actually found something that is working. I have tried almost every medication including cafergot, indocin, propranol, depakot, prednizone, verapmil, valium, lithium, etc, etc, etc...
Of course oxygen and Imitrex injections work to help the headache. But two months ago my doctor put me on 900 mg of Neurontin and 240 mg of Cartia. I walked out of the NYC office(one of the top headache doctors in the country) thinking to myself that this was just anotherfsilure in teh works. Within 8 days my headaches reduced in number and were far less severe. After 3 weeks they were completely under control. If one come on, it is weak and lasts about 2 minutes. I feel a little disoriented but pai free. Try it.. it may work for you!
Hi all foellow suffers, I've been suffering for just about 20 years now, but it's the first time i've seen a really serious web-page about it, I live in denmark, and we almost only have Imigran pills, pure Oxygen and lots of cold water/air, and if going to my Doctor, he know's absolutely nothing about it, The story is My father had it but (recovered) at the age of 60/63, My brother has it he is at his hopefully worst at the moment, I have it at my hopefully worst, my nephew is in the beginning stadium, and we all hope tht it dos'nt evolve in the same degree, as for the rest of us, sorry that i don't have any good advice, but PLEASE let me know if any of you have.
Sincerely Meike G Jensen. Denmark
On they roll! I'm now 56 and they started 40 years ago.
Did all the scans(my mother had a brain tumor),as well as pain clinics in Chicago, San Francisco, & NYC. Had all the drugs starting with ergotomine and presently Imitrex, which works well, but insurence only covers 9 tabs at a time(what a laugh!) I know eventually my present cycle will pass until the next one starts in another years time. Hopefully the cost of Imitrex will come down & a generic will become available. Until then, the beat goes on! Remember-we're not alone & we're not hypochondriacs, contrary to what some outsiders seem to think.
I'm a 51 year old female and I've been a Cluster Headache sufferer since 1968. I'm never without headache - day and night. It only varies from very painful to extremely painful. The intensity of the pain is absolutely exhausting. Any help somebody can give me would be greatly appreciated !
Hello from the land down under from a fellow cluster head. In real pain as I am typing but I now know I am not alone.
David Cooper
Hi! I've had migraine headaches since I was 16 (I'm 32 now) but they recently changed to just the aura but no pain. They still knock me out for the day though and I have a dull headache for a couple days after. I haven't heard of anyone else having just the aura and no pain. If anyone out there has, I'd appreciate any info you could pass along. Thanks!
There is a cure for CH! I have not thought about recently, then saw a Yahoo reference to them and it brought me here. I suffered from CH from age 15-39. Tried every over the counter medicing, including 2+2's from Canada, etc. If, at the first twinge I took 2 Excedrin I could ward it off but I knew I'd pay later...because CH's never seem to forget that they were temporarily twarted! Then, a friend of the family, a neurologist in Brussels heard of my dileman and said there was a drug authorize for Europe and many other places but..not by the US FDA. He sent me a supply..they were designed to be taken daily as a preventative (but NEVER on an empty stomach). Within 3 weeks I noticed the headaches were not occurring. I took the pills for a couple of months, just in case, then stopped to see what would happen. Nothing happened. I have not had a single CH in 18 years. The doctor was surprised somewhat because he did not think the drug could cure as well as prevent. I am living proof. He told me (before he died) that the US FDA does a lot of this to assist the US medical industry. I take that with a grain of salt but it does seem ludicrous the amount of time, money and pain spent on CH in the US. I'm not exaggerating. I went everywhere with a bottle of water and Excedrin. I would wake up in the middle of the night with my left temple and eye killing me. On the road, driving, etc. CH as you know, keeps no schedule although they do seem to be extreme for 4-6 weeks at a time. I am a survivor of CH. The name of the drug was/is Deseril and I bow down to the people who came up with it. Ask your doctor, check on the web, do whatever you have to in order to get this medicine. It really works. You can email me if you like, I'm not sure if it shows up on this message board so it's: chittum@sbcglobal.net I actually still have about 20 pills left although I'm sure their efficacy would be in question after so many years. You owe it yourselves to check it out. Again, it's called Deseril. Good luck!
23 years of tthe most terriable pain no one should ever go thru i have finially have a neouiouriousslogy who so far seems maybe going to be able to help me with a new med. i am still in early stages of the meds. but sso faar so good.
i am new at a comupter i aam 37 female never aanyy triggerg with am head/ i dont haave qualaity of life my migraainnes rule my life. theres a lifetimme of stuff i would write my on book that is if i could tyyyyyype and theres times i think i know as mucch about the head as the doctors do no disrespeact intented to them of course.
Hi everyone, I was very surprised to see I'm not alone. I suffered CH for 20 years, one a year for 3-4 weeks. 2 years ago I had surgery on my nose and since then no more CH, until 3 weeks ago: New years day a big dog bit my nose rather bad. I think now that my nose has something to do with CH. What do you think?
Hello to all. I have suffered from Cluster's for 16 years. After 5 years of suffering, and fear, I finally diagnosed my headaches myself after reading a book on them. My biggest complaint was that noone really knows what I'm talking about, or understands the pain.... until now. I stumbled upon this site, and practically started crying when I read some of the statements of other sufferers. I don't wish this pain on ANYONE, but I am very relieved to hear there are other people that understand. I've heard over and over... "My wife gets those" or "OOh, I hate migraines," but they have NO CLUE! I use Oxygen therapy and Imitrex.... usually kills most of them, but doozy's still kick in every once in a while. I jouined the site, and want to help others.... and have them help me! God Bless all you CH suffererers.... you are the bravest, and strongest people I know!!
Rico Von
Episodic sufferer since age 38 i am now 55 and currently on the down side of my attack. I take imetrex-verapamil-butabital-and aspirin.When attacks occur nothing really seems to help.Hang in there we are not alone as my Dr. in Ft.Worth tells me he is treating ten more people with CH right now.
I'm 29 and suffered from cluster headaches since I was 15. Funny thing is I didn't even have a name for them or realised anybody went through the same ordeal as me until I found this site. Visits to doctors, neurologists, scans etc. turned up nil and I gave up on the medical profession. Two years without an attack was bliss until recently so looks like here we go again. I read this site with interest and hope somebody can advise how to gain at least some relief no matter how little.
I am a 31 male,had my first cluster at age 15.My headaches last about 1 hour of pure torture.I have had a great 16 months with out one,but unfotunate me i have to just go ahead and deal with the exruciateing pain again.I have heard of all kinds of headaches,and i feel bad for those who go through the same shit i do.One things for sure the next 4 to 6 weaks of my life is going to suffer.And as usual,the doctors never know what to prescribe.Last year i tried the oxygen,no results.The only thing that has ever worked for me a little,not much but does help.Is to take 3 to 4 advil when i feel it comeing on.If the pain works its way towards hell i will masterbate to reduce pressure.How ever,that of course are days you have the privacey to do that not so easy with a 9 to 5,and family of 4.I have said this a hundred times and i will say it agan.Is there a medication out there can help at reduce 50% of the pain?
I have not had a cluster for over two years until the last few weeks. Again into the fold I go. God knows when these will end, my last eposide lasted over 5 months. concerned I will like to thank those that create and participate in this site. It is nice to know I am not alone.
Good Morning all... I started getting cluster headaches in my mid 20's and until just recently have been with out any since about 1996. This most recent attack has been going on for about 3 weeks now. Yesterday i had to inject myself 2 times with imitrex and now need to refill my script.(fun). My insurance provider has told me that I am only allowed to have 4 headaches a month... what a joke. I have found this site to be very useful and now know that i am not alone.
hey guys....so thankful to have found this site....im sad you all have to go through this pain but its comforting knowing that someone can relate.....love this site
I had sufferd from ch's since 1986 and as I got older they got worse. Just like most of you I would freeze it. I also found comfort in having my Husband rub my head with a wooden back massager and pulling my hair. If I was able to get to a doctor they just gave me a shot of demerol. Eventually it did not work. None of the medications designed for migrand's work. Once I became a weekly ritual I asked my OBGYN to refer me to a neurologist that I was going to die! Believe it or not I had one the day of my appointment and I was all I could do to get there. The doc said he had never seen anything like me. He pulled out his books and made a few phone calls and prescibed me verapemil 240mgs daily. That was May of 2001. I have not had a ch since! This week I have finally come off of the medication but when I have another attack I'm back on it! Good Luck to all.
Ifound your site to be very helpful and informative.I suffered my first cluster headache while pregnant with my daughter over 11 years ago and havent had one since.
My brother however,a heavy smoker and coffee drinker,suffers from clusters for at least 2 months each summer.
I will send him the URL of your website,so that he can get more help than he has now..Thanks again!
I have been getting cluster for about 10 years now. I have approx 3-5 per day. I only get then it seems every 2 year and they last approx 4-6 weeks. Imitrix work ok if I catch it early. I have found that imitrix with 2 asprin make the headache go away faster. I am now trying 500mg of magnesium. I will keep you posted on the results. I gladly welcome any advice anyone might have
Hello, my name is Karla, I´m 32, suffer from migrains since
I was 15, my oldest son is 7 and suffers from migrains since
he was 4. The last headache he had was back in Nov until
yesterday when he came back from school crying and unable to
handle it, he hurt so much that he wanted to bang his head on
my headboard, I put a cold pack on his eyes and gave him
MOTRIN (which according to the drs. is the only thing we
can give him because of his age) later he vomited and finally
was able to rest, this whole process took about an 1 1/2 hrs
of pain for my son. My migraines never had the nausea until
this past year. I don´t know what else to do for my son.
I'm Hank Mills, age 57. I am a husband, father, employee, volunteer, old car fanatic and, without my consent, bearer of the Chronic form of CH since 12:00 Noon Christmas Day 1982. That was the first, but certainly not the last. My late night headache stories are probably much like yours. I have tried and failed most of the usual meds, but then found Sansert. According to the statistics I am one of a small percentage to benefit from this drug. Its been my Silver Bullet for about the past 15 years. That doesn't means I am headache free, by any means. But its been managable. I am also blessed that oxygen works most of the time when its available. As you may be aware, Novartis has discontinued Sansert. So I'm now off on a new adventure. Glad I found this site and look forward to your wisdom and advice.
Hi. My name is Rich. I am 36 and have had episodic CHs for about 9 years. My doctor sent me to a neuroligist and he told me he knew as much as I did. Gave me a few free samples of aborters (that did not work) and sent me on my way. I am currently in a cluster. I get 1-3 a day and cluster lasts anywhere from 2 weeks to 2 months. I started out getting them about once a year but have since backed off to about every 2 to 2.5 years. The timing is always differnt. The funn part is I can feel the cluster come on. I will suddenly feel "off" and within a week I am doing my dance. Early in a phase the Imitrex pills or nasalspray work but that generally only lasts about 10 days and then it is useless.Once I get headed toward a peak then nothing seems to work. I just deal with the pain. Most of my CHs are in the 6-8 range on the Kip Scale.
Im 36 years old and have suffered with CH for 15 years now, It wasnt until 3yrs ago that I was properly diagnoised.
I have found that for me once the cluster starts that I take 200mg of verelan pm nightly after about 3days the headachs are gone.Although I continue to take the medicine throughout the cluster cycle. Good Luck to All OF you sufferes,and may you find help SOON!
I am a 34 woman sufferer of 18 years of "Clusters" I think it is wonderful to know that there are other sufferers out there and not just myself. I don't know of any other women who suffer from these "Mnsters" if there are please email me and tell me your stories.
Hi, my name is Francesco and my brother Lorenzo that lives in Italy as just been diagnostic with CH a week ago, so I start reading about it. I had no idea what he (and all of you)was going thru.
I'm sorry,be STRONG
Hay eveyone just need to vent.This is to the new people that just found this site.The people in this site are great.They know what you are all going through I have been reading the message boards.I feel like i found my lost bothers and sisters There is so mush help here.I thought i was all alone. suprise!!!wow!!!
My mane is Gene Gromek and I have been suffering from clusters for about 12 years. I get episodic clusters so my doc says, but lately i would consider myself cronic. I had 5 headaches today each going anywhere from 15 minutes (with imitrex) to 1 hour (no meds.) This was my first visit to the site and I could not believe that it existed. When I read the opening letters, I said to myself, these people know what it's like to have clusters. I always felt that no-one but a clusterhead knows the pain that we go through and unless oe actually has a cluster headache they will never really know the paion we expierence. Anyway, I just wantet to introduce myself and let the site know that from here on in I will be a regular reader and participant.
thanks,
Gene Gromek
I found good info here. I Pray some of it will help me after fighting them for 5 1/2 years
I have been a clusterhead for 22 yrs
and am in the worst seage, ever, have been haveing them for 60 days, at least one a day, please help roger
Hi! I was just surfing when i came to your site.I have suffered cluster headaches for about three years.I have tried many cures nothing seems to work.But I deal with them.
well hi eveyone .wish we all had a better life right now.maybe this site will help im hopeing.a matter of fack i know this site is going to help. were all here .it time to expose the monster.ako the beast.let's see how manny times we all can stab him. he wont survive .hell is where he came from hell is where he belongs his days are numbered. you all can help ,evey time you go on this site is one more stab.thank you all
Glad I found you guys, I'll be back soon.
Can't wait to chat.
first CH was in Buffalo NY in 1998... have had them yearly since, between April and September, except this year, started back up in November.
I was robbed and assualted with a baseball bat to the head. Consequently, I began having cluster headaches that have surely changed my life. I'm here in Seattle and can't find a Dr. who can get it right with what to give me for preventative and immediate pain. Does anyone have any helpful suggestions? If so, please send me a message!
Thanks-
thank god i found this site. who ever made this site thank you so much you are god sent!!!!!i have had these headaches for ten years.i hope i can help eveyone on this site.i have been to hell and back ps i will be on this site for a long time to come
Hi,all
Well clusters started early this year(shi*) Not quite ready,Doctor gave me epilim 500,s 2years ago and they work for me,along with the nasal spray,so Iv,e had to wait for them to kick in,To the people who get them and there long suffering partners,family,I wish you all peace.x If any one wants to mail feel free, can swap consultant stories,lol
Thanks to cluster headachce.com for the board.
Thank you.
I found this site today and I felt like I found salvation.
I don't seem to be able to explain to my husband, my boss, my friends and family what it feels like to be inside my head when this monster attacks.
Knowing that others understand that "headache" doesn't really come close to what is happening is both sad ( I wouldn't wish this on anyone.) and a tremendous relief.
As I went thru the site, I suddenly realized that I have been on anit-depressants for almost as long as I've had clusters. That will be something to talk to my Dr. about.
So, again, Thank you.
i visited my gp this morning after suffering with what i thought was migranes for 2-3 weeks. he told me i have cluster headaches - i've been given some medication to help releive but so far the tablets have only dulled today's headache. my heart goes out to those who suffer severely. mine don't seem so bad after reading some. I have pain start in my left eye which is constantly bloodshot since they started. the pressure builds to unbeleivable levels, they are increasing in frequency and i am getting a runny nose and feel quite disorientated when able to feel anything other than the pain in my head. good luck to all those guys out there, i didn't know it was such a widespread problem. i'll probably pop back for a longer look when i can
Just found this web site last night. What an awakening! I
had no idea there were so many CH sufferers. I'm a victim
also. Eight years now. Seasonal, episodal, not chronic. In
all the letters I read, not one mentioned taking Zomig. It
helps ME, as does ice packs. Thanks for being there!!
Its good to Know I'm not the only one with these monstors.
i beg all guyman know send mail for this site
Help me
Hi, this is a really informative website. . . it also makes me count my blessings, because it seems that I don't suffer from CH as badly as other folks. For what it's worth, I've probably been suffering from CH for at least twelve years, almost always in the winter during the time of "cedar fever", when Austin's air is full of cedar pollen and mold. (Our city council doesn't make much mention of this in its promotional materials!)Admittedly, I've been lucky some of the years in the past, and didn't get hit too bad with the painful headaches which previous doctors ascribed to allergy symptoms. But this year's crop of annual headaches got pretty bad a couple weeks ago, so I sought medical attention once again, despite the fact that I thought not much could be done. Bless his heart, I think my current doctor has made the correct diagnosis. Verapamil seems to be helping a lot, but I have some Imitrex in reserve for the next time I get hit by a "big one". I am blessed to have a caring wife as well, who has been very kind and understanding about the times I've had to get out of bed and try to fight another headache stabbing me in the left eye late at night.
That's about all I can say for now; I'm still trying to find out as much as I can about CH. I pray that God grants all the rest of you relief.
I'm 30 yrs old and have had these things for two yrs now. When I first got them I went thru what all of us did. Doc, ER, all questions no anwsers pain like no other. I was glad to find this site, and have done some research trying to find some relief. I welcome any suggestions, I currently get by with imitrex shots, oxygen, and stadol for pain. I made it alomst 18 months between cycles, but when they hit; man they hit! To all those who uderstand this, hang in there. If anyopne wants to chat about them and compare experience and tips, feel free.
I'm 30 yrs old and have had these things for two yrs now. When I first got them I went thru what all of us did. Doc, ER, all questions no anwsers pain like no other. I was glad to find this site, and have done some research trying to find some relief. I welcome any suggestions, I currently get by with imitrex shots, oxygen, and stadol for pain. I made it alomst 18 months between cycles, but when they hit; man they hit! To all those who uderstand this, hang in there. If anyopne wants to chat about them and compare experience and tips, feel free.
Well now that I have found out how to use this I now can respond, Thankyou for being patient. I have had chronic clusters for greater than 10 years now. I have been on all type of medication, treatments and hyptnotic help. I would like to share with what I have found to help. Track me here. While in the Army I experinced my first cluster HA. The clusters unfourtnatly have caused me to be discharged from the military. When I saw a civilian dentist for the first time in 12years he suggested that the cause of my HA may be related to the multipal type of filling that I had in my teeth. He suggested that I change all my fillings to one type of metal (gold). Yes this has been verry expensive and I am not done changing all as of yet, however, I have had a decrease in my HA and now have had a longer remission than ever before. May possiable that it is all in my head but what the heck it has worked. Wondering if anyone else has tried this and has noticed same results????
Hello This is my first visit please be patient
I'm a 49 year old man. I've had cluster headaches since I was about 16. My first ever was in typing class in my freshman year of High School. It truly freaked me out. I just got up and left the room and went home. I did't have another until I was about 20. Then they came on too many, hard and heavy. It took Dr.'s 4 years to diagnose them. I've literally have taken heavy duty pain killers most of my adult life. I take Imitrex and Oxygen, Cold ice packs & vey HOT showers to rid them with no avail. Mine used to wake me up in the middle of the nite.Now they come and go as they please. Day or night, without warning. Mine have become on the kip scale many, many a time at a 10, and always an 8. I've contimplated suicide. But never went through with it. It's a living hell.It literally feels like someone is burning a poker into your eye and taking an ice pick and ramming up your nostril into your brain, and taking a hammer and hammering 6 inch nails into your head. I beat my head against the wall to relieve the pressure. It's like fighting a demon. I pace the floor, cry like a baby and become a madman. I feel like Dr.Jeykle & Mr.Hyde. I may have them 6 a day sometimes. It ruins your life including your social life. I'm scared to go out of the house, not knowing when the next one will hit. They literally get so bad, after fighting them for hours upon end.I'm so drained I just have to go to bed. And that in itself is a scary situation. I'm afraid to go to sleep knowing i'll more than likely wake with another cluster headache.I have been beaten down so bad at times.It feels like someone has taken a baseball bat and beat me half to death. You want to die, but can't.I end up on the floor rolled up in a ball screeming to GOD, please let this pass now our just kill me. No one has ever seen me have one except one friend and of course my Dr. & many an Emergincy persanel whom are so supportive. I'd be scrared to have one around family or in public. They would probably have me put away. Thinking I had lost my mind. Put me in a sraight jacket and haul me off to the funny farm. And put me in rubber room. These headaches are so devistating.I know of two men that have killed themselves because of them. I always tell the few that know about me having them.If you ever find me dead, don't even question it. Because you'll know why. Thanks for letting me vent. Oh! too another med. I found to be fairly effective is stadol nasal spray or injections. The Dr.'s are so relultunt to give it to me too often. They've tried lithium. Didn't help at all. Put me on antideppressents thinking it would rid the pain. I just wished I could find a Doctor that has them, that could truly understand what we all go through that have to deal with this Devil. I know I'm no St. but I just can't imagine how and why God or the Devil or whomever could be so cruel.No one deserves these headaches. I wouldn't wish these on my worst enemy. D. Crow P.S. Excuse my typing, I just got rid of a cluster headache before it got rid of me. For all of you that suffer this devistating "THING" You're in my thoughts and prayes Sincerely, D. Crow
When my wife discovered this site and I paid a visit, I didn't know whether to laugh or cry... I've been a long-time headache sufferer -- "normal" ones when I was a kid, migraines from my mid-20s through my mid-40s, and now, as I near 50, cluster headaches for the past two weeks. I'm hoping desperately that this cycle will be a one-time only affair, but... we'll have to see. Anyway, it is deeply reassuring, though a bit saddening, to know there are so many fellow sufferers. To all of you, hang in there!
I have been getting very bad headaches since i was 10 or 11 years old, im now 23 and they are getting progressivly worse. mydoctor has been treating me for Migrain and i have only just discovered that i may be suffering from cluster headaches. I have asked for a referral to the London Migrain Clinic in the hope that they will be able to find me some sort of relief, i am currently at my wits end and was so pleased to find this site last night. My doctor has put me on something called Tegretol, Carbamazepine which hasnt made any difference at all, the only way i have found to get relief is to take several Sopadol in the hope that they will knock me out so i can try and sleep through the HA, however he has now told me that i cant take these with the medication i am now on, i can take paracetamol though he has said ( i really dont think he understands).
So i am new to all this and dont even know if i am chronic or epsodic. I get the HA's every 2 to 5 Months and they can last from 2 weeks to 6 weeks, they come frrom 2am until 9am and then reoccure several times a day.
Im sorry if im droning on, but i could really use some advice and understanding from anyone out there.
Thanks
Nicky
thanx for the help the site was really inforamtive since ive only just been diagnosed with clusters but suffered with them for 3 years now
Hi, i'm new to this site and desperate for some help.
I have been a cluster head since 12/15/02. Before that, I maybe had a headache once or twice a year, and only for a few short time. Woke up on 12/15 and felt like there was a vice around my head, but only the left had side and into my left ear. Went to the doctor. Said I had a sinus infection and ear infection and gave me antibiotics. Took them for the prescribed 5 days. No relief. Went back to Doctor. Took x-rays, all clear. Gave me the migraine shot. No relieft. Did a ct scan. All clear. Gave me Vicadin - hated the way it made me feel. Gave me Percacet. Would have had to quit work as I was zombie woman. Gave me Flexeril - feel asleep on my desk and walked around like Gumby. Doctor called and said they had no clue what was wrong with my and referred me to a neurologist. Have an appointment on 02/04. Friends telling me to go to a chiropractor. Don't know about this... I'm about ready to chop my head off for relief, especially because as I said, this is coming from a person who perhaps took a Tylenol 2-3 times a year. Glad to have found this web site. Thanks for listening...
i have headaches 3 to 4 times a week i'm soooo tired of having them.
hello. i have a problem and I dont know what it is. 2 years ago i got very drunk at a party and have never recovered the next day I woke up feeling drunk not in my head but my vision was the same as the night before! and it has never gone away it has got worse with every migraine I have! and its almost soo unbearable sometimes I would rather be blind I am very proud Of myself for the way I have coped with it as im 19 and no one really understands. the doctor said its kind of vertigo constant migraine but I am off to the hospital of neurolgy in a weeks time for tests to tell me exactly what it is hopefully! Please if any one relates to my problem please email me at tinydancer666@hotmail.com I am in desperate need to hear of other people who have suffered with this or still do. thankyou x
I awake everynight (for the last 4 months always between 2:35 and 2:41am (99% of the time @ 2:39am), the pain is so bad, behind the left eye, my left temple is so sore I can't even place a wet wash rag on it and my left nostile burns???
What can I do for this pain, please help!!
I'm 52 years old had these killers since I was 15. Wasn't until I was 28 I was told what I suffered from. These are 30% of my VA disability. It's a bi**h not knowing why or when i'll have them again. R-now I'm on verapamil daily, and prochlorperazine maleate, when they are upon me. Nothing I've ever been given works. Have even tried killing myself. But I'm sill here, dreading more attacts. Any ideas? Any help?
Im a 42 yo male, Cluster headaches dominated my life on and off for as long as I could remember. when I was in my teens I smashed holes in the walls of my mother home with my head trying to make a distraction from the pain of the "hot rod stuck through my eye" a little over 10 years ago I broke down and went to a neurologist after getting sick from the pain meds I took during my migraine episodes, it was before imatrex. I was given sansert(an ergot alkaline drug) and prednisone (cortisone steroid) they worked great but at great cost, i devoloped avascular necroses of the hips and had to have artificial hips installed. I must admit that cluster headaches have controlled and influenced my life more than anything...period...that being said I have some things I'd like to share with anyone who has ever suffered from a cluster headache...first, I am not a Dr. however the majority of my suffering was brought on by Dr.'s I did my own research and treatment after losing my hips to that prescription drug (prednisone) Imatrex works for treatment for me usually, however it almost always gives me an awful headache and my cluster returns like clockwork later on usually the next day...i narrowed down that I believe I have allergies that trigger some of the episodes, I often gotten relief from antihistamines. that's worth a try for anyone. and it's over the counter. There is an herb that has been my savior and works without side affects, it doesnt make me drowsy, it doesnt make my brain short circuit like imatrex does when I've taken it(i have a hard time functioning on imatrex,) has low cost, and always breaks the cycles. plus you can take it as much and as often as you want to fend off an attack if you are in a cycle. it's called feverfew. there is a brand product Mygrafew which is concentrated and works best for me. I have had to take imatrex quite a few times. since after the loss of my hips 10 yrs ago I avoid script drugs as much as possible, feverfew has kept me from needing imatrex too many times to mention and broken the imatrex cycle of returning clusters almost immediately, even to the point of waking up thinking Im having a cluster like I had been having every morn in that cycle and realising that its a really dull cluster not the normal rod stuck through my eye type and I go back to sleep and dont see another cluster for years sometimes...really!!! its so amazing, it has saved my life... also I've found my biggest triggers are, mold, cedar pollen ( im allergic to cedar and mold) as well as paint and new tires and petroleum fumes. my biggest enemy is too much sleep and unscheduled naps. they seem to aggrivate my condition and can even bring on a cycle too.I hope I can help someone with this advise, i wish I had known these things a long time ago. thx, Dickson
Hi everyone,
I'm new here but I've a cluster headache for 21 years. And it attacks again. I'm pleased to find you. Thanks a lot.
Steve
Beast has arrived 10/01/03. Starting to get worse feel very tired.Hate to go to sleep try to stay up but it still comes. Taking imigran with some success but leaves me feeling 101 years old, or is it the head pain?! Had clusters for 22 years now , every 2 years normally. Last one was 3 years ago. I smoke but am stopping! Stopped for 8 years in 1993 and never had a cluster for 7 years! Also trying SAD lamp Who knows I will fly to the moon if the pain goes!Took 5 years to find out what it was i had doctors just kept sending me away with more pain killers and they might as well have been sweets! Thank god for imigran injections.
This has been working for me. I still get the cycles, but only 3/10 instead of 9/10 (and begging to die). For some reasons this is working - I have never had this sort of relief in all my 35yrs of pain. I still have the cycles, but only 3/10 instead of 9/10. I take these every day of my life - they are 'tissue salts' - available from most health shops. Cal. Phos, Cal Fluo, Mag Phos, B12. I also take Melatonin when the cycle starts. Hope this helps someone. Please let me know if it helps, as I would be very interested. Kris
It was almost a year since I was in a cluster- at least it seemed that long. They just started again recently (DEC 24, 2002) and my life is hell...again! I was so hoping that I was done. That I had paid my debt to the demon and that I was now saved. Fat Chance! I am three weeks into this and ready to sell my soul for a cure. I've had CHs for the last 11 years or so. Usually my remission was no longer than a week if I was lucky. That's why when I had MONTHS of remission, I though it was over!!! I thought I was free!! Those were the best months I've had in years- I totally forgot I even get these damn things. Maybe that was my mistake...and the demon snuck up when I wasn't paying attention.
Damn Him anyway! Go Away!!! Just Go AWAY!
I won't bore you with the details but have been a "Clusterhead" for 12 years now-tried everything from meditation (lol) to Morphine (ER Visit). Am in a Cluster Season now but headed to a new neuro who is going to give me BOTOX shots-No I'm not that wrinkeled-around the head. Will let you know if it works since nothing else I have tried does. We just keep trying to find a cure I guess. Something that works for one does not work for another but I am at the end of the rope-gonna tie a knot and just hang on. Take Care Friends!
I would like to know if anyone knows about quadelent headaches?
They are caused form exsertion. I also suffer from cluster headaches.
Have been for 20 years.
I have been suffering from cluster headaches for 20 yrs. I kept thinking I would grow-out of them but I am 39 yrs old now & my cluster season is just starting up again-----I hope I live thru this one ! I spent years going to Drs. & trying different meds....even had sinus surgery hoping to help....useless ! The past few yrs I have used a product called MIGRANAL which relieves my symptoms a little faster, I think.....
Wow, I can't believe I cried when I started reading about this site. NEVER have I found a site that addresses exactly what I've been going through since I was 12(45 now). I've been placed on just about everything mentioned on the medication post and the only thing that works 99% of the time is/has been OXYGEN!(Thanks Dr. Atkinson) I feel for everybody who reads this and has to dance with the BEAST, believe me nothing would be better than to never have to twist/shout, head bang and curse obsenities toward our savior, God Almighty, though there have been several times I've had my doubts that He/She existed allowing such an excruciatingly painful condition to exist. Yes, mine have come back since a week before X-mas and are starting to crescendo(I beg, hope, pray). People, let's hope and pray that there is a treatment/cure found because I really don't know how many more times I'll be able to survive "10's" on the Kip scale (actually I don't know how anyone can. And if ever there was a way of harnessing the BEAST and unleashing Him at will, humanity BEWARE!!! For there is NOTHING I would NOT do to take away the dance, and I do feel I speak volumes for those of us who "TANGO".
I have sufferd with CH from the age of 7,I am now 42.I learned what they were in 95 when during one of the many trips to the hospital, the er doctor had given me a large dose of morphine to stop the pain and put me out. It did'nt do eather,confused he discused it with another doctor who was well familer with ch,he told me to contact my neuroligest.( I also have epelepcy)He started me on prednizone,with only minamal results and horrable side effects.Without any further help I made it through this bout.2 years later it started again.this time they started me on imitrex,I was given the pills then the nasal spray,these did not work they finally gave me the injectable,with near instant results (a godsend)unfortunatly the price prevents me from using it for anything but the worst ones.(if anyone knows how to get it cheaper than135.00 for 2 dosesplease tell me)I have found that if aat the start of the headeach I start working out hard I can stop it befor it really gets going,but this leaves me exausted as I will do this 4to6 hrs a day but compared to the headeach its a piece of cake.My headeachs usuallyrun in cycles of every 3 yrs starting in october and ending in december,but they havent hit me since 97.they started againthis year but not until december a first.I have managed to keep them in check with heavy work outs at the onsets but 2 of the over fourty ive had this bout did not help .I offer this information in the hopes that it may help someone make it through thier ch bouts.If there is a hell ch is it.I apologise for spelling grammer and ramblig,I havent slept in 7 weeks. DOC.
I thought I was the only one in the world who suffered with these damn things, until I found this sight. mine all started with a head injury in 1994. I have been told I would have to deal with it the rest of my life for there is nothing that any one but God can do. I have been hospitalized several times the the hospital staff knows me onon a first name base or just by seeing my face. I have had every drug that every one has tried nothing works I even went as far as putting bengay on my forhead. noise, light slightest movement really bothers me. UNtil sept. 1994 I could never tell anyone what a headache was for I never had one, Now I have a headache on an everyday bases none stop, just some days better than others.I feel bad for all of you I know what hell you're all going through NO pain clinic or anything helps. been through it all and still going through it.Wish all of you better luck. for more info on what I'm going through and have gone through in the past e-mail me at hornerscabin@aol.com or chorner@zoominternet.net will gladley respond. well need to sign off need to take my meds. you all got a friend in pennsboro wv.
hi,my husband suffers ch.I call them "storms".Until he came across this site I thought he was mad.Hemust have felt so alone until he found ur site.Other people feelin what he feels.I mean Im just a spectator after all.Sittin there day after day,night after night.what can I do but watch and try offer some help, running around with fans to cool him down,open windows for cool air,wichin off lights-tvs,and hardest of all keeping our three small children quiet.Thank god for imitex and oxygen it really helps him.It used to be so hard when we would come home from our gp with another perscription for these "storms" to continue.Id feel so bad.But not half as bad as he did.Hes got his life back for now- heres hopin they dont come back, if only. Appreciate this site.
Hello Fellow CH Sufferers,
I've been headache free since Feb '02 and believe it is oxgen that has given me this relief.
I was 49 years old before and had not even heard of CH, when I experienced that horrible pain for the first time.
It took serious of Internist and a neurologist, who told me I could not have CH because I was female, before finding a neurologist, who was experienced enough to help me. At least help me as much one who has CH can be helped.
We tried every medication known to man - nothing really helped. After nine years of suffering, he ordered oxygen, which has been a blessing. I began using the oxygen at the onset, or when I thought I was getting a headache. There were nights when I fell asleep with the mask on, breathing pure oxygen for hours. As a skeptic, I did not believe it would work. I am now a true believer and recommend it to my fellow CH sufferers. It works! Try it and don't give up until you are headache free.
ElizabethNathanson@comcast.net
hi i have been a cluster sufferer for the past twelve years i was only diagnosed properly for the first time last year (2001) when a doctor in the emergency room actually saw me with a half cluster.since then i have tried various treatments for relief of clusters (instead of paracetamol)i have found that imigran subject is the best one i have tried so far when i am having a cluster season. the only draw back with it is that each injection only lasts for about seven hours so most days i am taking the maximum dose of two a day and oxygen in between.imigran subject is to be recommended to anyone who hasnt tried it but in injection form only. i currently go through two bouts of cluster per year lasting for about three months each time sometimes when i am in a cluster season i just want to curl up into a ball and die but thanks to my loving wife and family for there support and understanding i never seem to do it
The first CH I had was when my wife and I were in town on a Saturday, stop at a bar and had a few drinks and this headache hit me. So severe, we went to a freind house, I layed down, cold wash rag on my forehead, quite and the pain would not leave and no relief for hours. I thought I had developed an alegelic reaction to whiskey or beer. I noticed after that I would get these headaches when drinking so I would restrict myself. I would get some relief with Sud-a-fed but very little. Then they just quite.
The next year, the headaches hit again. I didn't relate them to seasonal, but that now seams to be the case. As this year, as the winter months came around, I would go to sleep and 1 to 1 1/2 hours after I went to sleep, the headaches will hit. Early in the season they would hit 2 to 3 times a night (sure reduces the smount of sleep, Huh!)
At this point, it seems that I feel them coming on, the best thing I can do is get up before they get severe. I found it best to sit up, my head leaning forward and blow my nose and get it opened up and drink water. Like now, I had one, sat at the computer, do the above and they go away in 20 to 30 minites. If I go back to bed under the hour, I will have another. I can't wait for spring time or later on in the season to come around.
I would be interested in hearing from someone else out there with simular conditions and how they treat or prevent this demon from sneaking up on them.
Ken
For those of you who have difficulty explaining these attacks to family, employers and friends, here is Simon Bower's letter from OUCH UK that is by far the best thing we have that describes Ch. It's a great thing to copy:
CLUSTER HEADACHES
A note for those who work with a C.H. sufferer
Why should I read this?
Someone you work with has probably given you this note to explain a little about a condition they suffer from called cluster headaches. It is likely that before you met them, you had never heard of this condition, which, after all, affects fewer than 1% of the population. Men are more frequently affected than women, probably by around 3 to 1.
Because it is so rare, sufferers often feel isolated, especially through misunderstanding by those who do not fully appreciate its effects. This short explanation, written by a fellow sufferer, is intended to help with that.
What is it?
It is a neurological condition which manifests itself as extreme pain, on one side of the head. It is frequently accompanied by some or all of:
tearing in the the eye,
runny/blocked nose,
changes in the pupil of the affected side,
sweating
The attacks are relatively short, with a very rapid onset, normally subsiding after about an hour, if not treated with drugs. They tend to occur several times a day, most frequently waking the patient in the early hours. There are two types of the condition, episodic and chronic. In the episodic form, the attacks occur in a bout lasting several weeks, after which they disappear. This is where the name cluster headache comes from. Chronic sufferers do not get this relief, and their attacks can continue daily for many years (25 or more is not unknown).
A curiosity of C.H. is that both the individual attacks and the clusters themselves can have an almost metronomic regularity - attacks starting at a precise time of day is typical (I can almost set my watch by the 2.15am attack).
It is a headache, in that the pain is in the head, but that is really where the similarity ends. The name itself leads to confusion, as people immediately think of it as something that can be cured by taking a pill, or by thinking of it as a migraine. As one who has had both conditions, clusters are nothing like migraine.
Those bald facts, though, do not do justice to the pain experienced. It is stated, by neurologists who deal with the condition, to be the most severe pain experienced by human beings - certainly female sufferers say that it is more painful than childbirth. Try and imagine giving birth three or more times a day, possibly for several years, and you may get some idea of what it is like. A more sinister name for it is suicide headache - for obvious reasons. More than half of all sufferers have considered this, and, sadly, I know of at least three who have been driven to it in the last eighteen months.
How is your friend/colleague affected?
This will vary enormously, and, surprisingly, you will almost certainly never witness a full-blown attack. I know from experience with my own family that seeing someone in that state can be quite terrifying. Sufferers are reluctant to allow anyone else to see them at that point, I suspect for three reasons. First, with family and friends, it is simply to avoid them having to see something which, as they are powerless to help, is very upsetting. Second, no-one is keen to be seen in a state where they will scream, cry, pace, hit their head repeatedly and generally be uncontrollable - dignity does matter. (I heard from someone recently who went to their local hospital, where they were not treated with medication, but in fact institutionalised for three days because of their extreme behaviour.) Finally, coping with the attack is wearing in the extreme, and having to cope with other people around is just not possible for most.
In addition the cumulative effects of repeated attacks, and the medications used, can lead to tiredness, irritability, and an occasional loss of temper (particularly when it is suggested that things can't possibly be that bad). Depression is quite common. Some individuals lose their jobs, and even partners and homes, as a result of C.H. That said, because having to cope is part of the nature of the condition, most sufferers will "get along" - they have to be quite strong to survive.
Most can be helped by medication, but, because the cause of the illness in unknown there is no cure. Those on medication take (generally large quantities of) preventative drugs. These often mask or reduce the symptoms, but, to my knowledge, never remove them. When an attack occurs, it can be treated most effectively by breathing pure oxygen or injections of sumatriptan.
It should be noted here that doctors are often poorly informed about C.H., and misdiagnosis is very common. Some GPs are reluctant to prescribe certain drugs, even when they are known to be effective. In the UK the situation is variable, and I know I am fortunate in that my attacks are always short due to doctors who are prepared to give me the medications I need. In the States, because of the insurance aspect of drug provision, the situation seems far worse, many patients having to do without effective medication at all. I know I could not cope with that.
What can you do to help?
When an attack hits, nothing. The best thing is to stay well away. Afterwards, a quiet word is probably a good idea. You may find the sufferer will talk about what he goes through if you ask - he may appreciate the opportunity to explain. Sympathy will be appreciated, certainly, and, if you are working with someone, make sure that you do not give any reason for them to think that you blame them for the inconvenience they may have caused. Most will be keen to get on with things, and repay any efforts you have made to cover for them, if the nature of the work allows.
If you are interested, you might try visiting a couple of web sites - www.clusterheadaches.com/ or www.clusterheadaches.org/, the latter being the site of the charity, the Organisation for the Understanding of Cluster Headaches (OUCH). In the UK, www.clusterheadaches.org.uk/ and www.ouch-uk.org are now providing more specifically UK targeted information. A UK charity (OUCH (UK)) is currently being set up. These will give you a better idea of things than this information sheet can possibly do.
Things to avoid saying/doing
Most sufferers are happy to discuss how things affect them, and how you can best help them, but you will find your conversations very short if you say any of the following:
"I had one of those once" - no-one ever has one cluster headache
"My aunt has migraine too" - migraine is nothing like C.H.
"Can't you just take a tablet and lie down?" - no is the answer, most sufferers cannot lie down during an attack
"Just pull yourself together and work through it" - suggest that, and step back several paces!
This is not rudeness, but simply the result of experience. Sufferers know that sometimes it is simply better to ignore remarks such as these and leave the person in ignorance. If you have read this far, though, that probably doesn't apply to you!
Simon Bower, Staffordshire UK, June 2000 (rev. Jan 2001)
Dumbly, I didn't preface Dr. Wright's little technique.Here goes: This sounds strange but it was very helpful to me and others. I hope you will give it a try. You might like to practice between attacks:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
I have been blessed to have not had an attack in about two years, but they are back, it has been a twenty plus year ordeal with the worst pain of my life, it feels as is some is taking a hot knife and sticking it imy eye and twisting it.
Finally a website that fits my symptoms. I've had fun reading through all the sites its nice to know im not alone. I cant believe some of the comments they are hilariously co-incidental. I did'nt even know that you could take meds to cure clusters im on my way to my doctors asap..
The web is an amazing tool to fight this. I was just diagnosed and am realizing that I'm lucky at least to find out what is happening to me - thank God for my doctor who recognized it right away. As I read the stories, I'm crying because this has all been happening to me and I didn't know why. I seem to be responding to the prednisone but still feel "hung over", as lots of you say. Thanks for the tips from everyone.
When I made my first posting I had been up all night and was in my "hangover" stage as I call it. I have since heard from two other sufferers and I wanted to say Thanks! I've had headaches for 14 or 15 years now, I get them all year long and they come in cycles of 3 pr 4 days every 2 to 5 weeks. Nights are the worst but I get them in the daytime also, usually 3 to 7 in a 24 hour period. I was once given Imitrex and ended up on the telemetry floor of the hospital for 5 days hooked up to all kinds of machines, I was almost dead by the time I'd made it to the hospital (the Imitrex shut down all my blood vessls and arteries). I've been afraid to try anything since so I just make my way through the pain and try to live my life. I refuse to allow the BEAST to win but he sure puts up a good fight. I've found that getting tense or anxious brings them on so over the years I've learned to not get upset over the small stuff. Actually, it's been good for me, I live a much calmer life now. Getting upset over missed appointments, being late, things I have no control over and other drivers bad habits don't enter my life now. I just ask myself "Is anyone going to die?" if the answer is no then I don't worry about it! A big help is, I guess, a form of self hypnosis I do. I wasn't taught it but kind of developed it myself so there may be a real name for it. When I was a teenager I hated the shots that the dentist gave me so I refused them, I just concentrated on other things and had him go ahead and do his job. I used this with the birth of my four children along with the breathing techniques I was taught and started trying it with the headaches when they started. Over the years it has worked well for me if I can fight to stay focused through the pain. Also heat helps for some reason, getting in the hot tub or putting heat on my face and neck seems to ease it a bit. Laying down makes it about 100 times worse. I hope this helps you if you try it, anyone else having suggestions that don't include meds please let me know. I'll try anything when the pain is bad. Thanks to all of you for posting, I've learned something from almost everyone. This summer I hurt three discs in my back and couldn't sit or stand for 6 weeks, the pain was sharp and excrutiating but when someone commented on how awful it must be I told them that it was nothing compared to these headaches. I knew it would end if I kept up with the physical therapy, I could still think clearly and hold conversations, people could touch me without it hurting my skin, I didn't want everyone to GO AWAY and leave me alone and the pain wasn't nearly as bad. People really don't understand what these headaches are like.
Hi, My husband has cluster headaches and we are in the midst of a terrible bout...I was wondering if anyone could tell me about rebound headaches from imatrex use...we have tried the prednisone burst (twice) and it didn't work...now he is taking a lot of imatrex and I am worried it is adding to the problem...
thanks. you all have my heartfelt sympathies...this is not like anything i have ever seen.
I was suffering for more than 25 years, but since I take 4 times 40 mg VERAPAMIL, the cluster headache is TOTALLY gone! Ask your doc for a prescription! Good luck to you all.
What a wonderful site for CH sufferers to interact. I am a 54 yr old woman and have had these beastly things since I was 13 yrs old. Usually last about 2 months , then off again for 6 months, maybe 1 year, maybe 2 years....then back again. When I was younger, of course I had "migraines" according to all the doctors, and they kept me full of tranquilizers and pain pills. Guess you know, I now have a resistance to the pain pills like no other. Finally, while I was in the Air Force, I managed to convince a doctor to try me on oxygen for the CHs. That worked really well, and used it for subsequesnt bouts. However, my last bout, the oxygen wasn't doing too well. That's when they put me on Imitrex. That worked really well. Now, new bout (after a glorious 3 year break) started beginning of December 2002. I have a wonderful doctor who this time, gave me samples of the Imitrex injections to use. Darn good thing too considering the cost of them. What a difference!!! Relief in 5 minutes. I know it might not work that well for everyone, but it certainly has helped me. Now, the only problem is.....you can only take these injections a maximum of 2 per day, and on the days I might have 3,4, or 5 headaches......Well, you just sit through them, rock, cry, etc, etc, etc.....you all know about this. Thanks for creating this site, and the best of luck to you all.
Hi Everybody just wanted to say i know how all of you feel. Iwas diagnosed with cluster headaches about 20 years ago i was fifteen at the time when i started to get them. They came in bouts every 3 to 4 years and last 1 to2 months talk about unbearable pain i wouldn't wish these on my worst enemy the pain behind the eye the nausua, I have tried lithium, cafergot , and several others cafergot subdued it to a somewhat bearable state its been a few years now so im just biding my time now. Well thanks for listening.
Hi i have a grandson 11 years old with autsim he started to
bang his head with his two hands and some times with his closed fists and verry hard it is so hard to see him do this
he is not verbal so we cant find what the problem is we asked his neuroiogyist he told us that he can not heart his brain by banging his head ? and that there is no medicine for this condition if any one out there can help or give some advise on this problum please let us know by e mail
thanking all in advance L. M
Hi I'm Paula Wallman i'm 29 can't work as I am disabled with M.S since I was 17 but was told I had it when I was nearly 19 that was after I broke my Humoros and suffering with depresion
hi,im a migrain sufferer of about 14 years,every six months for about a month i wake up every other day in agony.Ive taken any thing from what my GP can pescribe me.Ive tried over the counter medicenes,chinese medicene,acupunture,diets,the list is endless.please can you maybe suggest something?
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