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Below are the guestbook entries from August 1st-15th 1999. 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 Ok, I feel stupid. I am a 30 year old computer nerd who has suffered from cluster migraines for 15 years and yesterday was the first day I thought to use the internet to look for info on cluster migraines. I am here looking for ideas on how to prevent/abort my headaches and will be glad to share my experiences with my successes/failures. Nothing seems to work for more than one cycle, but I have had luck with Stadol and steroids.Tom Norman <tom.norman@mindspring.com> Phoenix, AZ USA Tuesday, August 31, 1999 at 22:07:56 (EDT)
I am a 44 year old male who has suffered from headaches since I was a teenager. About 5 years ago I began to have severe pain - as described by cluster headache sufferers- behind my right eye. The cluster headaches lasted about 3 weeks....one to two a day....I was finally able to see a neurologist who diagnosed them as "cluster headaches". I was put on Imatrex. I have tried pill form but I find that the nasal spray works much more quickly than pills. Thank goodness for medical plans!! My cluster headaches seem to reoccur about every two to three years during different seasons. If anyone has tried other medication that works quickly please let me know....I find the hour of pain unbearable.
I began suffering in late April of this year without knowing what they were until July. They began suddenly and without warning while I was at work causing intense pain and nausea. I would get only one or two a day usually not very severe but they increased in intensity throughout may until I could no longer take them and I finally saw a doctor. June was a pretty good month very few headaches, but beginning the second week of July they came on in full force. I felt like my head was wounded, my eye exploding in my face. I suffered through going to work each day but as the month progressed they became worse(though I could predict when they would occur (9 a.m., 3 p.m., 9 p.m. (rarely) and 3 a.m.). They began increasing in intensity and frequency until I had to take a leave of absense from work. I work in a bank and I am using a phone and computer for a great part of the day and I could no longer concentrate and focus on my job. I have been off for a month now and I finally see a neurologist tomorrow (Sept 1st). It takes awhile in Canada to see a specialist I've had the appt. booked since June. I can't describe the pain (others here have done a great job doing that and I appreciate their interpretaion), however the feeling I have besides the pain is like I'm drowning in my head unable to keep my head from under water desprately trying to escape the vortex of pain sucking me further and further downward. It is good that my wife works nights and is not privy to the pain that I sometimes to endure because I think it would hurt her more than it hurts me. Again thank you for all your anecdotes, links and support. Without this site I probably would have snapped a long time ago.
Sent a message to the message board.
I have been on this web site for four months now but never signed the guess book. Not sure why!
I am 45 years old female I have had Clusters for 19 years I am a chronic. I have them just about every night most of the time its one or two, some nights can be as many as four.
I use to get very scard when the pain came I always felt like it would kill me like there was something wrong that the doctors had not found. My family and friends thought I was crazy, that the pain was in my mind. Then I found this wonderful site. Here I have learned I am not crazy, and clusters are not going to kill me. I found friends here that
have clusters and understand my pain. I found the right medication on this web site that has helped lessen the pain.
My family and friends now know I am not crazy. Now I still
sit in the floor and rock and cry but I am no longer afraid of the demon as I was. I know now I am not alone in this fight. Thanks to my cluster of friends on this web site. Thanks for building this wed site DJ you have helped many.
Wow, what a wonderful site! I have had CH headaches since I was very young, but diagnosed when I was a Freshman in HS. I am now 22 years old and old enough to start questioning what my doctors are prescribing. I take a combo of medications to help me with my headaches. I am currently taking Atenolol each night before I go to bed, Imitrex at the onset of the headache, and Vicoprofen as the pain killer if Imitrex doesn't help. Well, I honestly think the Imitrek has not helped me. I have used it several times and each time it makes me feel nauseaus and my heart beats really fast. I do admit that if I go to sleep for 1-2 hours I wake up feeling better, but only sometimes. I used the Imitrex nasal at first and couldn't stand the taste of it, now I take the pills and hear alot of people talking about the injections. Is their any other preventative method out there, rather than taking all of the meds?
Just making sure everything works after a major update
Sorry..!
I gave out the wrong E-mail address...This one is correct.
I have had a variety of headaches for some 25 years, and basically just put up with them. About 5 years ago I started to feel pressure in my right ear, temple, nose, and sharp stabbing pains in my right eye. These pains would come and go, and again I put up with them. On severe days I would feel sick (and sometimes was), took pain-killers and went to bed. It came to the point that after a long spell of feeling "ill" most of the time , I went to see a series of specialists (ENT, etc) and included a M.R.I. The final diagnoses was vague, and suggested a form of migraine. I got on with my life and went from spell to spell.
I woke up yesterday feeling really awful, again taking pain killers (and healing from my wife..did this work?) and went back to bed. After a short rest and deep sleep, I awoke feeling better and able to function. That afternoon I came across a book on headaches in a local book-shop, and found a chapter on CLUSTER headaches...It seems to fit..what do you think?
Any way life goes on and knowledge is ever powerful. This is a useful site and I will continue to visit it. Regards to all. Martin
I am a 55 year old woman and on July 23, 1999 had a reacuurance of cluster headaches after being 15 years cluster free. I started when I was 20 years old in 1963. The clusters lasted about 3 weeks and then I would go about 2 years before I had another attack. In 1984 I had a very severe attack lasting 6 weeks. Towards the end of the attack I was admitted to a hospital. After reading about clusters this past month I believe that in 1984 I was probably a chronic Cluster. I lost about 15 pounds and was never pain free. I was treated with egotomaine which seemed to break the cluster. I never suffered from clusters until this past July. I am now going on my 5th week. I am being treated with Imitrix Nasal Spray, which in 95% of use aborts the headaches within 10-30 minutes. I have had 5 SEVERE attacks where Imitrix did not work. I almost joined the Hemlock Society and am still thinking about it as it is only 24 hours ago that I had a severe attack. My problem (as well as others)is I get 4-5 attacks a day and I can only take 2 Imitrix in a 24 hour period. What the heck do you do with the other 3 headaches that are coming!?! I'm an glad that there is somplace to post these messages, not glad that there are so many of us around. Would welcome any feedback or help. I forgot to mention that I was on Prednisone which did not help and am now on Verapimil which I don't think is working. Hoping for a cure! LOL
Jeanne
I've been suffering from this demon for about one month and i really feel for those of you who have been dealing with this for such a long time. I take prednisone, verapamil, ergomar and imitrex. imitrex seems to work the best(injections). I"m really looking for some advice for this problem, its been so long since I've gotten any sleep at all and its making my life very miserable. I get anywhere from 1-4 chs a day mostly from 500pm-400am. Any advice would be a huge help. I'm thinking about changing my screen name to cntsleep. This has to be worse than hell!
This site is the best thing since sliced bread. Since I went to an ENT specialist in Sarasota FL 23 years ago, not one of my doctors has ever tried to relieve my pain. Well, I now have all 19 pages of the medical info with which to confront my GP this week.
I did have some relief for the past two years by using feverfew, but not even that helps now. My pharmacist last week gave me some panadiene forte (tylenol forte for North American sufferers), and it dulled the pain for an hour before the band played on.
The person I feel most sorrow for is my wife. As she puts it, one minute I'm mild mannered and the next an axe murderer.
This is great, heard about it on the local TV news, about time a site like this was created. Thank you from the bottom of my heart (and the side of my head).
After almost 10yrs. I finaly found a doctor who knew what I had, Cluster Headaches!
DJ ...
I just read where you set the record straight on why your website was built. It was written so simply, honestly and straight from the heart ... if anyone misunderstands your intent now ... they aren't thinking clearly. Magnifico!
I am glad to have finally found this site. I have suffered from chronic clusters and migranies for 34 yrs. What seems to help me most now is prednisone and the Imitrex injections.Please feel free to e-mail me if I can help in any way. Pat
hello
I have just found this site Via a good friend,,,40 years old and a 22 year suffer on a Soc. Sec. disablilty income,,,I have allot Experince in the cluster cycles and i Have a lenghty Head trauma history,,,, anytime I can Help Hit the Hotmail.com address I'll get right back to ya!!!
I've been suffering from CH since I was about 12 years old I'am 32 now and have had them like clock work almost all those years.This spring I had lasic surgery so would not have to wear glasses or contacts anymore.I just started getting a cluster last week and now they feel different from how they use to feel,they are still CH but I was wondering if anyone has had the surgery and the same reactions,maybe its all in my HEAD,something we have all heard or the person you tell you get CH and they say ya I know I get bad headaches too and they never heard of cluster headaches please email me back if you have any new info Thanks Paul
I am also suffering from cluster headache sind's I got a few strokes. I am using zoomig when I can't bear it anymore.I have tremmendous parasite noise in yhe hears when I get the headache.
Regards to all
Daniel
Great to find this site. Suffered from CH for 20 years and thought I had it bad until I read the experiences of some other sufferers here. Here's wishing pain-free days and nights to us all.
Hi,
Just wanted to say hello. I have been having Clusters
for years and have tried about everything,but have got very
little relief. Thanks for a great site.
Mike
Just sitting here surfing trying to avoid sleeping although exhausted 10 days into an episode of clusters because I know that I will be awake and in pain within two hours of falling asleep........Sound familiar? Imitrex works, but rebounds in three to four hours, so I will be guaranteed to awaken with a cluster twice during the night, then probably a third sometime during the afternoon. Imitrex is great and I really don't have any idea how I survived before Imitrex or even worse before DHE, but still looking for a preventive that works. I've tried lithium, beta-blockers, verapamil, Depakote, Wygraine, Neurontin, nortriptyline, Indocin, intranasal lidocaine, methysergide, oxygen. Prednisone at 80 mg a day works, but I get Cushingoid in about three weeks, and I'm afraid I'll die from bleeding ulcers or osteoporosis so I won't take it any more (my mother died as a result of corticosteroid therapy). I'm trying Topamax now-has anyone tried it? I try to keep a sense of humor about it. I really think that some contests are in order. For instance, who has spent the most out of pocket in a calendar year for Imitrex? My highest so far has been $6,000. Or the most weight gain on one course of Prednisone? Mine was 50 lbs. in six weeks. I tried to count the bruises on my thighs from Imitrex once, but gave up when I got a cluster and had to re-inject. There's always looking on the bright side... it has been almost two years since my last episode, so if I average the thirty headaches from the past ten days, that's only 30 clusters in 700 days or one cluster headache every 23 days, so what am I complaining about? Well, maybe this will be a short episode-I had one that was only three weeks ten years ago, although the last one was four months. What I really hate is that I tend to start episodes while I'm on vacation-I finally found that described in the literature, which made me feel a little less neurotic. If I'm looking for the bright side, at least this episode started in August while my analyst is on vacation wherever all the analysts go in August so I don't have to explore the psychological underpinnings of my cluster headaches while simultaneously acknowledging that there has never been a shred of data suggesting a psychological etiology for cluster headaches. Well, I guess I should give up and go to sleep and get the headaches over with so I can get one day closer to the end of this episode, whenever that comes. I do want to express my deepest sympathy for any of you who have chronic cluster headaches, because the only thing that really gets me through my episodes is knowing that they will end and I will have six months to two years of remission to allow me the fantasy that they may never return(clicking my heels three times and saying "there's no place like home.........
I was affected by Clusters 5 years ago. It stopped until recently. I had no idea what this pain was, I thought it was just a bad headache caused by eye-strain (left eye). I had my eyes tested and was prescribbed glasses. The pain continued and then I blammed stress for causing this agonising condition. I had a CT scan while fearing the worst, still nothing. I have had taken Oxygen which worked great. I get a five minute warning sign before the big one strikes. As soon as I get this warning I take Two Aspro-Clears'(Soluble Asprin) in a 1/3 glass of water. It seems to be working. I haven't had a bad one for longer than Five Minutes after this remedy. It may work for you. Good luck!!
Thanks for your site, now I know what my headaches are. I've had these pains for over 30 years, but none of the doctors I visited had a clue.
I live in the Phila. Pa. area. Any suggestions to find a helpful doctor in my area.
Thanks , I needed a site like this. Most people try , but they just dont have a clue what its like to suffer from CH.
I am fairly new to the world of the WEB. I am now convinced you can find something on any topic on here.
It is great to know that there are others that suffer like I often do, however, I wouldn't want to wish it upon anyone! I hope that in my 20 years of dealing with clusters, I might be able to offer some good insight to someone out there in the same boat.
hey fellow sufferers, great site isn't it! i've been a long time sufferer and like most of you have been through all the conventional and radical methods of treatment, even surgical procedures. the only abotive that works is Stadol nasal spray and because i'm now considered benign chronic condition, i'm having a hard time finding docs to perscribe it long term.got a good lead on one though!! this is a note to anyone wanting to get rid of the pain so bad you're willing to take a risk, look into trigeminal rhyzotomy. it only promises a 33% chance at best ( be careful of the down side). It could work for you, but it didn't for me. There is evidence that the pain travels through the trigeminal/ganglion nerves. when the V-1(temple area) nerve is numb i don't have the pain, just the rest of the symptoms. anything that helps numb ( even sticking your head under cold water). Better living thru chemicals!!!!!!!!! Has anyone heard of marijuana ( pot, weed,gangia ) use to help cluster sufferers. If anyone wants to talk feel free to e-mail. I think everyone should check out reflexology and practice it. It really helps take the edge off, plus you'll impress anyone you perform it on. Maybe even start your own practice!!!!!!!!!!! I did!
Unfortunately, I feel the pain too. It's amazing to see that something people once told me was "in-my-head" (ha!) afflicts others as well.
Just found out the existance of this side. I realy feel sorry to find out that so many people suffer this terrible CH. Hopefully the relief is near so all of us can live our life without being affraid that the attack will strike again. I suffered CH for over 18 yrs and Imigran (Imitrex) helps me to go thru. The pain mainly appears within the first hour after I'd fall a sleep. I have been informed by someone who suffered CH that she was rescued by a Dr. who eliminate the nerve that caused the problem (?) Can anyone tell more about this. Wish you all the best and don't forget ... keep on smiling. Aad van der Kleij
I am a 36 year old male. I have suffered with cluster headaches since age 17. I was in the U.S. Coast Guard when my first headache struck. I was eventually discharged from the service for "psychiatric" reasons brought on my the pain and fear of the pain from cluster headaches. Even now, as I sit here typing this information, I feel the pain rising from the right side of my neck, up over the right ear, into my right temple and over my right eye. God, NO!! Here is comes again. Please, God in Heaven, HELP ME!! JUST LET ME DIE!!!
62 years male, bedeviled for 18 years. Just out of remission. Oxygen works, sometimes. Lidocaine not much. Can't take Imitrex because of heart. Thought I would outlive the damn things, but so it goes.
My father suffes and thinks he is the only one, especially when most of the doctors he has talked to know very little on the subject. He doesn't have a computer, but is in dire need of locating a doctor in the Wilson, NC (neer Raleigh/Durham) area. Can anyone help?
Mine restarted June 14 1999 after being gone for 6 years i had forgotten how bad they were and at first thought it was a bad tooth and insisted on the dentist giving me a root cannel on a good tooth. The meds are Zomig and they are costing about $250.00 every 5 days
the beast never sleeps
Hello. I am 21 and have suffered from headaches for at least 6 years. I don't believe that they are cluster headaches, but I was hoping someone hear might have some information for me. I get short (1 minute or less), sudden, sharp, stabbing headaches. They can happen at any time. I can go for a month without a headache or go through a month with several headaches. I have spoken with several doctors and heard many theories, but no one has ever told me what definitely causes them or how to get rid of them. I can be any situation you can think of and all of a sudden be hit with this pain. My reaction is usually, ow, stop what I am doing, and grab my head. You can imagine how unsafe this is when I am driving or how strange it must seem to others in the middle of conversations. If anyone here can help in any way I would be very appreciative.
I have had these headaches since I was about 13. I always thought they were migraines until recently. I have tried many drugs, nothing works, or I can't take it due to drug interactions or allergic reactions. (I am allergic to Imitrex. Zomig, Amerge, Maxalt etc. all have life threatening drug interactions with another medication I have to take.) Vicodin makes me sick, Vicoprofen makes me sick and they don't work anyway. Migranal was like squirting water up my nose. Demerol eases "the music" but when I wake back up, it is still there. I take Fiorinal and Fiorinal w/codeine when I feel it starting. Most that get out of control, I wake up with so I can't stop it. I take the Fiorinal to keep my sanity when I wake up with it, providing it dosen't end up putting me in bed for days. My doctor didn't really understand what I was actually going through until she finally saw me during a full blown HA. Now my medication gets approved much faster than before. The longest bad HA I have had lasted about 2 weeks. I do have a headache daily, but some only last seconds. But there is pain every day.
I'm currently in the midst of my 5th or 6th cycle in 11 years. I need information on ALL treatment options. I think I've tried most of them and am now grasping for straws! Thanks !!
thank you for this site! As the wife of a ch sufferer I have the pain of not being able to do anything to help him. Now maybe I can find something that will!
I've had Cluster Headaches for 19 years, but only knew what they were in the last 10 years. Cafergot suppositories have been my most successful treatment over the years, but I don't like the side effects or the dangers from overuse. I'm lucky to have found this site - It's comforting to know I do not suffer alone, and there's lots of first-hand treatment success stories I can arm myself with when I visit my doctor.
Having suffered for thirty years, I have just been taken off beta blockers and put onto neat oxygen and Zomig. Does not seem to be working so far.
I have just been reading through some of the messages on your board, it is amazing! for the last few years I too have been suffering with these headaches, and feel at last at least I am not alone, and sort of comforted in a way, that there are others who understand the pain! I have had just about every type of Drug available and have found that Imigran ( Imitrex) is the only way I can get relief, but here in Aus it is $135.00, I guess by the sounds of some of the letters it is pretty expensive in the States, I have heard it is $15.00 for the pack of 2 refills in New Zealand, and wish that this was the case here.
It is great to know that I am not the only one who suffers fromthis crippling pain. I say crippling because once it developes I am not able to concentrate on anything. In my case most of the times it seems to relate to anxiety and tension but can also develop after meals. In my case timing is mostly forenoon or early afternoon. It is never at early morning hours i.e.' 1.00a.m.
Once I go through all the messages on the board I would be able to relate more and suffer les as a result of trying some of the non-drug based suggestions.Thanx for the lovely forum.
I found a Cure for Cluster Headaches (At least for me)
make them stop PLEASE!!
Has anyone suffered a tooth ache? Well imagin the same pain but in different spots on one side of your face. In the temple, jaw, behind the eye, in the ear and up the nose. The pain strikes all places at once or one after the other. I mone and gron, rock back and forth, pray, pray and pray. Some times death is inviteing. Anything to make the pain go away. I have experience this for 3 years. Some times I use a ice pack. At other times I use a hot water bottle. A hot tub of water will ease the pain sometimes. It usually wakes me up from a sound sleep. It has hit me every night for three weeks, then I might get lucky and not have a attack for a month. I can not relate the attack to anything. It just happens. I seeked medical help but before I could see the specialist my husband lost his job and the insurance with it. I have had much pain from different illness, near death illness but none of the pain measures up to what I use to call it "Face Ache". After researching my pain on the net I realize it is called "Cluster Headaches". Strange because more than the head hurts.Hope some of my tips that I use to help ease my pain can help you...Thank You, Martha Oliver
I went to the Dr. about those headaches...I tought it was symptoms of a depression, burn-out, or why not, ear infection, teeth problems, eye problem. I had these cycles once in a while for the last 4 years. Thanks to you people and to this site, I had a great visit with a top neuro two weeks ago and am now on prednisone and imitrex as needed. What a relief it is.
I know I am still in a cycle, I have some mild ghosts.
It was never as bad as some sufferers describe; my worst were 4 attacks in 24 hours. I hate even one attack a day.
Thanks to this site, I know what I have, and mostly, what to do and what the means are for relief.
Long live this site.
Michel
Hello,
I've been diagnosed with cluster headaches as well as migraines.
I've been on verapamil (80 mg) for three days now.
In six more days, the doesage will double.
Thank you this board, and the knowledge that I'm not alone.
Since done of my family suffer from headaches, they think I'm
strange or need non-medical help.
Have had clusters for about 20 years.
Very curious to know about other sufferers
and if there are clinics that are of help.
Had them since 1982, the worst pain ever,finally found Imatrex and life is better knowing that I can stop the pain.
Thanks for being there
What a fantastic site. I have just spent the last 2 hours reading fellow sufferers messages as well as the medical info. My heart goes out to you all. I was diagnosed with chronic CH some 13 years ago, and have never had more than a 5 day remission period. Currently taking Inderal, Depakote and Imitrex injections as needed. Imitrex has always been effective, the problem is my Neurologist will not prescribe more than 4 or 5 doses per visit which is every 6 months, so I am constantly calling her for refills and if it hasn't been at least 2 weeks since I used the last one, she won't refill. I have used Imitrex for many years with no ill effects. I thought I had read all there is to read about this drug, or am I missing something? I have considered changing doctors but I am afraid of the same senerio. Anyone else out there in this situation?
I have never posted, but suffer from ch since early teens. I am using o2 now after years of useless pain medication. The o2 helps to control pain - if pain is an accurate enough word. and yes I sometimes feel alone or perhaps isolated is a better definition, I know this is untrue, but in the early moring hours of hell it's just you, the pain and the darkness. I have a wonderful husband who lays next to me in the dark and who believes nothing I say about life in in those hours and four 15 years and has only done anything and everything he can and will. I thank God for him he helps keep me positive during these dark days. I am also relieved ( well not relieved) to see others, let alone females that have chs I have never spoken to another person that suffers. I will read this site I feel less isolated today.
It's not a wonder cure or a brilliant new drug, but I've found that sticking your head under a coldwater bathtub faucet and letting the cold water numb your head actually dulls the intensity of the pain to a more manegable level. It's rather boring to sit with your head under a running faucet for two hours waiting for the damn thing to go away and it still hurts like hell, but you may find thoughts of suicide less reasonable :)
Thank you for this Website. No doctor I have ever seen has really known what to do about my clusters. Now I'm armed with information !
I feel compelled to add another entry. I just found this site a few days ago and made an entry before really surfing it. Now that I have surfed around a bit all I want to say is...THANX DJ you're making alot of people feel better.
I was a sufferer for 10 years.4/5 a week.I was near the end when none of the pain killers ( including self injection) did not work and I was on target to have to take morphine.
Then a young Country Doctor recommended BETA BLOCKERS - I did not believe in yet another pill but I took them.
I was fixed within 12 hours: My perception/awareness Etc. returned and I have not had one since that day - albeit I have to take BETA BLOCKERS every day.
'Heart Rate' does not appear ( to my studies) to have much/anything to do with it.Recent studies seem to suggest that BATE BLOCKERS 'kill' or 'negate' poisons made by your own body.Are you sick at the end of a headache/migrane Etc. ? Do you bring up foul tasting body fluids ? I did.
After that 'quick fix' I feel that I must tell all other sufferers of my 'luck' or 'probable/possible IMMEDIATE cure'.
My phone number is UK +44 1373 830418 if you want to talk about it.
Anyway - good luck - and do not give up as I nearly did.
ARM Chappell
hi glad to see that someone is trying to help
great site thanks james newton
I am stunned to find this site. I was thinking about giving up. Now I see others have the same pain. I cry to know what we all experience. I will defietly try new ideas. This is fantastic.
I just started the cycle again last week after over a year off. I had almost forgotten how bad they can get.
My headaches are back. First time in 8 years!!
Suffered on a once a year basis--last treatment was using steroids and this was the most successful to date
I just found this website. Even tho I hate to see so many people with the same problem it is somehow refreshing to know that so many others REALLY know what we are going thru. It is so hard to explain the pain to people who have never experienced on of these headaches. Thanks everyone for the tips and ideas. I will try to share some of my own.
Brad
The best way I've found to treat these pesky things is to treat
them like migraines. Aspirin, a cold cloth on the back of the neck,
plenty of quiet and dark, and sleep, if you can.
Hi. I have suffered with chronic cluster headaches since 1992. I have found little relief from oxygen, Lithium and Depekote. I have a heart condition making matters worse because I can not use vaso constricters to abort the attacks.
I would like to hear from others with heart disease and clusters. I can sympathize with all yuou cluster sufferers, last night I was glad I didnt have a gun.
I do not personally have this terrible pain but someone I love very much does. The only thing i can do is to be there for him when he is having these excruciating headaches. I hope and pray that he will be through this pain soon and that they will not return and I do sympathize will all these people that suffer. No one should have to endure such intense pain as I see in my loved one.
I'm a 46 yr old male who has been suffering with clusters since I have been about 22 yrs old. It's been three years now since I have had one and thought they were finished until last week when they suddenly came back. I only hope this is the last time that I will ever get them, but will always be looking behind my back for them.
Assume site! I feel so much better knowing I am not alone (although I do feel bad for the rest of you). It would be nice to talk to someone who would not say 'I get headaches too'. A family member calmly told me that their ear infection hurts as much as my clusters but she can handle pain much better than I can. Only a fellow sufferer can understand.
Was diagnosed by one of the MANY doctors with clusters,
I am not sure myself if it is that or regualr migraine.
Had them since I was 12 (manyyyyyy years ago).
I am glad to see a website that talks and assist those who
have this problem.
hi im a 35 year old male suffering from ch. this is like day 25 on this bout.its very frastrating!! im getting somr releif from percocet and vistral.before this bout i been getting a couple a week for the last 2 years. this is the longest one has ever last . glad i found this site. take care all :)
I am interested in learning more about
Hello dear reader!
I am a Dutch male, 39 years old, and suffering from this clusters for about 25 years.
It's good to read so much information about the thing on this site.
In my case, I have a lot of help bij taking
'PROPANOLOL'2 times 40 milligram a day.
The dochter gave me this since 4 yaers,
and it helps to make the quality of my life much better.
Only once a month I'm suffering clusters now;
in the past it was once three days.
'Propanolol'is a 'Betha-Blocker', mostly used to heartpatients.
All the best to you, dear reader!
Frans Schmidt
Den Haag,
Holland
Don't feel alone now.
Just checking out sites as I go through my yearly hell - it certainly helps to be amongst friends.
I've been suffering with clusters for over 20 years. I just had a two year repreive, but had my first in this cycle this morning at 4:00. Have fair help with a combination of Cyproheptadine and bio-feedback, but am not looking forward to the next few months. It's refreshing to see that other's share my thoughts and anxieties, and I totally agree that I wish supervisors and managers truly understood the pain.
All I wish is if every Manager,Boss,Supervisor, etc..., could read these first hand accounts of our sometimes tourturous lives we live. There are soooooo many that think " It's just a headache, take an asprin". I would not wish this on anyone, but if they had to deal with the pain for only 5 minutes they would have more compassion & understanding for us all. I did not know this guest area existed but am I glad I found it! Is now listed in my fav's.
I am a sufferer and depend on Imitrex injections but cannot
keep up with the number of headaches that occur as you should only take two in
24 hours. I am looking for any help on this matter.Thanks
All I wish is if every Manager,Boss,Supervisor, etc..., could read these first hand accounts of our sometimes tourturous lives we live. There are soooooo many that think " It's just a headache, take an asprin". I would not wish this on anyone, but if they had to deal with the pain for only 5 minutes they would have more compassion & understanding for us all. I did not know this guest area existed but am I glad I found it! Is know listed in my fav's.
I had my first cluster headache 15 years ago, with usually two bouts per year since then. This is day 20 of my current bout, and the last several nights have been some of the worst I've ever had. I've tried ergotamine, verapamil, oxygen, and I'm less and less hopeful of a medical cure... But reading through this site gives me a lot of information and ideas I hadn't run across before. And the testimonials of so many other sufferers may be the most powerful and comforting medicine I've found to date. Thanks for making this site available...
Thought I had them beat. How wrong I was.15 months on Prednisolone with very few mild attacks.Then,out of the blue.WHAM!they're back. I have no pain relief when they hit me.Nothing works.Have just been given Naramig.What a waste of money.Have felt like s*** all day.
Can anyone relate the onset of C.H with hormone injections,i.e. contraception or general anasthetic. Mine started at around the time I had both. Reckon one of these has started my CH's of.Never had a headache other than a hangover before the start of these. If you can relate to any of the above please let me know.
I'm 56 - started getting these things about 25 years ago; Maybe more. They come every 3 years, except this time it was 4 years-don't know why yet, but it was 4. Usually happen at 2 to 3 in the morning at first - after about a week they can come any time, but still will be there waiting for me at 2 to 3AM. This is the second bout that I have ever taken anything at all for them.....I take Prednisone, a 6 day dosage......this time I've taken two 6 day dosages. Its been three weeks. This is the second day that I haven't had one so they will probably leave me alone for another 3 or 4 years (hopefully they'll be gone for good!!!) But I still won't go back to work till Mon. just to make sure. If I have them again, I'll be in Alabama; We are retiring 2001 and getting out of Fl. and going back to Alabama (McIntosh) I'll be checking this site often. If anyone would like to e-mail me, please feel free to do so anytime. If I can give any information that would help anyone with these things I'll be more than glad to share it.....there just isn't much to give though, is there? Every one seems to hurt the same and say the same.....but it is nice to know that there is a place to come to and talk about it and others know what your talking about.
Thanks,
Dennis
I can't comprehend your pain but I do understand powerlessness. Someone I love deeply has led me here. I cannot take away the pain, but I remain to pray and wish you all success in battling this oppressive and debilitating pain. There must be a solution! Blessed be!
Wow! This is my initial research into headache types to match what I'm feeling, and it's amazing how the symptoms of clusters fit my pain and frequency. I know that I've found my problem!!!
I am 44years old and I started getting cluster head aces three year ago I went two year without them and in march or this year they came back.
The Dr. has me on imitrex and i have to take as many as four a day, The imitrex is driving my blood pres. up high.
On the 18th I will be going to a nero. Dr. and hopefully he can find somthing to stop the constant pain.
Great to find a site that knows about the pain we suffer during our episodes. My heart goes out to all of you who must somehow find a way to make it through another series of headaches.
I have suffered from clusters for about 12 years now. My last attack was in August of 1998. Nutrition and chiropractic seem to have worked for me. I'm looking forward to reading about how others have beat these nasty headaches.
I guess I'm not alone in my misery!!!!!
Hi again. Have had two major attacks in the last couple of days. My pain is always there, 24 hrs, and then blows up to big pain. Last night I had an attack and tried 1 extra strength excedrin. It didn't touch it. So...........I figrued I'd try the Imitrex nasal spray my neurolgist gave me. In 15 minutes I was without pain. But hey can you use it every day or even twice a day!!! The pain is just sitting there to day and is starting to put me on edge. IS THERE ANYONE OUT THERE WHO HAS THE PAIN 24 HRS A DAY in various stages????? If so please e-mail me. Thanks!!
Is there any cure? I am 26 today and i have suffered since I was 12. I have used most of the meds, and few haved worked and if they did only for a short time. With all the suffering I have tried to find anything to ease it at all. Well here are a few simple ones. Lydocane spray into the nose. Get your body cold, very cold sit in the deepfreezer if you can. This one sounds funny but hey try it belch, berp. Well there you go,some may work,so may not. In the 14 years I have never personally talk to anyone else who suffers.
Hello fellow sufferers. I'm 48, clusters since age 22. I've had success with oxygen for last 5 years. 10ml for about 10 minutes, but would love to find something to prevent them so I could go out for a while without dragging a tank around. Anything help anyone hold off attacks for a least a few hours? It's great to find this site, I've only scratched the surface of the site so far, and hope to find a lot of useful info. What do mine feel like? It feels like someone opens up the side of my skull, throws in some red hot coals, and says "hold onto these for an hour or so!"
hopeing to find someone here now ...
I would like to be able to talk with some one else from my area.
Just found this site tonite', and it makes me feel better to know
that someone understands the pain of these headaches!! I'll
be visiting this site alot.
I was a cluster headache victim for approximately 20 yrs. 21 years ago I went into complete remission. Treatments were a bit unusual but something worked. Lately, symptons are recurring and I would like to speak to other sufferers about new treatments.
Hi all. I had a nerve block on 3 Aug BUT it was not a steroid shot, just an antesetic. It did not work. Had another nerve block into the Greater Occipital Nerve base on the 12th of Aug and it has taken away the pain from the nerve base running up to the top of my head. HOWEVER, I still have the pain above my left eye and through it. I did spend all day on the 7th on the net trying to find anythng about greater occipital neuralgia. WELLLLLLLLLLL I did find a site and low and behold greater occipital neuralgia triggers migraines and CLUSTER HEADACHES!!!!!! I printed it all and took it with me. This new pain doc is right up to date with everything. Since this last steroid shot took the occipital pain away but not the pain above the eye etc I believe the greater occipital nerve is the cause of my clusters. I am going armed on my next appt with info about what to take---well at least what some of you have tried!!! He also put me on Neurontin which is an epilepsy med. It helps rebuild damaged nerves and is suppose to decrease pain. If this doesn't work he will take me off from it. I am nervous because this next visit is the last time I can have a steroid nerve block for 6 mongths. He can only give 3 shots every six months. So I am apprehensive for the next 6 months. With out the shot I have all the pain of a full blown cluster. I still have full blown pain above my eye and into it but not along the greater occipital nerve.
Well better run. Read the updateed messages and weep for you all. The pain is undescribale to anyone who has not had it!!!! Keep up your hopes and for some of you don't do anything foolish to end the pain PLEASE. My prayers are with us all. Geneva
You should update your page since it lists January, 1999 as the last update. Maybe you should remove it if not used. Not sure how I got here since I was looking for fiorcet medicine info.
I have had CH since 15yr old. Misdiagnosed as sinus(given tons of sudafed)until age 20. Usually have a bout evry 2 yrs. which last 4-6 wks. Have not had bout in almost 5 yrs. I thought they were gone for good. Now in the 3rd wk and already 2 visits to ER. Glad I found this site. Very helpful info.
As they say on talk radio,,,"long time sufferer, first time caller." Or something like that. *S*
I have suffered with cluster headaches for years and have been through all the meds with different doctors but nothing worked for me until i met a dr that also suffered from the headaches and he suggested Stadol Nasal Spray. it aborts the headaches in about 10 minutes and to me has been a lifesaver.
I don't know how much longer I can take this pain!
I have had headaches since I was 8yrs old and I cannot believe I found you on the coputor.I am now in my 40's and this is wonderful. thanks
What can I say that hasn't already been said. 18 year sufferer, episodic, 2 episodes a year, 3-4 months long w/HA 3-4 times per day. Wish my head would just explode and get it over with.
4.5 years. Worse than ever. Blue Shield quit covering Imi-
trx injections. $47.00 per shot. Help! Any ideas ?
415 a Rugar St., Plattsburgh, NY 12901. Bob Brancato
Hi, I am the spouse of a sufferer so I hope I am not intruding. It's such a relief to have this resource to help him. I wish better days for all of you.
Thank you for such an informative web site. I've suffered from cluster headaches for many, many years.
28 year old brother to you all!
Glad to have found a place where I don't get nods and pitying
smiles, but real understanding.
Thanks to all for your honesty.
20 year sufferer. Glad to find this group!
I am 43 years old and have had CH's off and on for about 14 years.
I have just gone a stretch of 2 years, thinking they were gone, and now
just in the past two weeks we're doing it again - oh boy. I only went
to a doctor once, he gave me Naprosin and told me to take it
when I had a headache. As you know, popping a pill when a CH
is coming on is like trying to dismantle the track as the train is
rolling down upon you. So mostly I've endured them, holding my head
and rubbing my neck, walking blindly down the road, seeking the
refuge of darkness. After reading your stories and the medical information
provided on this page, it appears there may be some help in some
form - maybe there always was and the doctor I went to was
uninformed or didn't care enough to put forth effort. I have made an
appointment to see a doctor again in a couple of weeks and hope
this time to be a bit more informed and able to speak to him with
some degree of intelligence about the different medications
available. My wife and children endure not only the sight of me
crying and cowering like a feeble piece of shit, but also endure
the after effects, that being the dazed and unhappy mood I posess
resulting from lack of sleep and having slammers. Like I try to explain
to her, just because the guy with the pointed boots stopped kicking
me in the head doesn't mean that's the end of it. The nausea
continues for some time. I appreciate reading your stories and thank
you for the encouragement you've provided - maybe I will discover relief
in some form or fashion as a result of your writings. I sincerely hope
all of you will do the same someday.
I'm 25 yrs old & I have been suffering from cluster headaches since I was 14. I haven't had one since April but once I do get one I will get them for a entire mth, once a day and then they will come back a couple mths after that & last another mth. I enjoy this sight very much.
I logged onto the "old site" a few months ago and found very useful info. But this site is by far better than the old one. I had my first CH in Sept of 1981. I went to the clinic and was told "I don't know what it is". My second and successing CH's did not happen until the fall of 1994. Now I have been diagnosed as a "chronic sufferer", I have an average of 3 per day for 2 straight weeks then I get 2 weeks off then they come back. Maybe we should invest in Glaxo/Wellcome. We seem to keep them in business. Just a thought......
Hello friends and fellow sufferers. I'm new and don't quite know what to say. I've been a cluster sufferer for approximately 14 years. My attacks have been very tough and increasing, over the years, but not as bad as some I have been reading about. The disorder did cost me my job as an airline pilot however. Well, best wishes to all.:-) Greg
Pure hell. Curious about trigeminal nerve.
send me any new information that comes out
I'm just signing the guest book now after I think I double
posted two messages on the message board - gotta love
computers when you're in pain!!
two weeks since the last attack - i think they've gone again
(until when?) - YIPEEEEE!!!
I had no idea there was a site like this! I have the same
story as most of you. I have had the CHs for 16 years. I'm
into the 4th week now and I'm starting to loose it! Once, I
even had a doctor tell me the reason I got headaches was
because I was addicted to asprin, what a jerk!
I just want it to go away!
Thank you for the information on this site.
I would like to share my comments with other sufferers
E-mail me at jmartins@marqott.co.za
sorry for takin up two entries at once but after seeing
how much everyone else wrote i decided to go into greater
detail so you know im not a flake. i believed for a long
time that i started having clusters at age 12. but recently
ive remembered having a few isolated clusters (mistaken
as migraines which i also get lucky me!!) when i was but
a wee lad. when i was 12 i started getting them daily like
clockwork. (sound familiar?) however ive always gotten them
during the day unlike most people according to the survey
on this site. at first they were no big deal kinda like an
icecream headache and only about 30 seconds long.(oh how i
long for those happy days!) that cycle continued for about
a year then they became pretty unpredictable in timing and
duration but none were like REAL bad until i was 16 and i
had one, just one but it was an ass kicker! i mean really!
people were askin me what was goin on and i didnt know what to tell em. i had headaches before but this thing was insane! then luckily (kinda) i had no more for two years.
during my 18th summer is when the bad ones started. but then they were only one every two days or so. my 19th year completely sucked i had up to 3 a day everyday with no more than 2 days of remission. i really thought i was gonna die. i had some so bad i blacked out and did things i have no memory of and only know of them from the stories of my friends (nothing criminal or sexual) (i think)
since then they have decreased in frequency and increased in severity (woohoo!) to make a long story short (too late) ive tried almost every drug on the market and things that will bring down a charging rhino at 50 paces cant touch it. so assuming i was at the end of my rope i started checking out anything that might have any chance of helping. at first i was checkin out yoga (dont laugh i was desperate)because of stories of their ability to control pain through the use of meditation and breathing. and eventualy discovered tai chi (a chinese martial art popular among old folks) well the day i got the book i began to have one (surprise surprise) and being desperate with nothing to lose but my mind i tried the breathing techniques and they actually worked! (i tried pure oxygen a year before with horrible results so it aint the increased flow of air) then after 2 more attacks i went into remisson for eight months and here i am now. in june my unwelcome visitor made his return new and improved with a kung fu grip. now i get attacked so suddenly that its very difficult to get into a meditative state but the best thing ive found to do is to convince myself to use the anger and hatred i have for this thing as motivation to kick its ass and make it go away. and i know as well as any of you that its much easier said than done but its the only thing thats ever given me a succes rate that can even be calculated. (i keep a journal) although it hasnt worked in every instance. im determined to beat this thing and am glad to know (sorta) that i am not the only one. an interesting thing is to know that there isnt anything thats worked for everyone. and really the only thing that would make all the suffering we have endured worth it is if we can figure it out and make sure it happens to no one else. i feel for all of ya. just be glad we dont live in medieval times! some idiot would drill our heads full of holes put on leeches and make us wear a bird mask! seeya!
ive had isolated clusters all my life and periodic clusters
since i was 12 ive tried almost every drug theyll give me
and the only positive results ive had are with tai chi
breathing techniques check it out
I was "surfing" and typed in "headache" and then chose cluster headache. I have had mine for about 17 years and have never spoken to anyone else that has them. While my family and friends are very sympathetic, I have always felt they do not really know what it's like. I too have had every imaginable treatment and have found virtually nothing to get rid of them permanently. I had a period of a year and a half without them and it was heaven. They returned about six weeks ago with a vengeance. It is comfroting to finally find a site in which I know you all understand what this kind of incredible pain is like. Thank God I found all of you! I'm sure I'll be a regular visitor. As night approaches I am comforted that maybe my private hell isn't quite so private.
UNREAL! I have been taking codine for over ten years to help deal with the pain of cluster headaches or should I say the one eyed killer pain from hell. Like most people I have seen every kind of healer form an internist to a acupuncturist. Nothing nothing NOthing even came close to helping. Now I just do my best to catch them with 2 codine a half a gravol and a very hot shower, followed by a pack of ice on my eye and one on the back of my head. I worry about the long term effects of the codine. But what else can you do when you find some thing that works?!?!? The only advice I have that has helped in keeping them at bay for the most part is making sure I don't dehidrate. That is an alomst guarantee for a head ache. Catch 22 is that the codine that helps so well dehidrates. I gulp a few cups of rehidration salts. It really helps. The other killer is over sleep. I don't get the connection with that one.... Good luck to everyone out there, I am so sad that you do know my pain, I wouldn't wish this on anyone!
Hi...I think I'm your'e most distant cluster buddy...I live out in the Pacfic,
between Japan & Australia, and they hurt just as much out here too! I have had clusters for 24years,
and was amazed to see that I fit the profile exactly. I have had many, many variations of treatment, and seem to be one of the few that oxygen doesn't work for.
In fact, I would get terrible rebounds from it. I was a test patient for Imitrex
(sumatriptan)before it hit the market......I thought I'd died and gone to heaven. One thing that worked for me, or rather cut down my twice daily headaches to three/four times a week was 100mg
amitryptaline, with Imitrex injections for the breakthrough...however since having children, I could no longer use that as it would take me at least two hours to come around in the morning, and I would drag myself through the day with difficulty. It beat having the headaches, but with kids its impossible, so now I'm back to a mix of 50mg imitrex tabs, 20mg nasal spray and the injections.
I'm into my 2nd month after a 2 year(longest ever) break, and this time have a terrible ache in the lower,
back,left hand side of my skull, which feels like someone has hit me with a crowbar, and then stuffed it in the hole. I'm taking narcotics for that, but am getting some terrible rebounds...does anyone else have the skull ache??
Thanks for this wonderful site, it made me cry when I found it...I felt really alone before.
What is your email address JeffT?
I have suffered with cluster headaches for the past 6 years. I had no idea this site existed byt I am glad I found it. I have tried all the conventional therapies e.g., verapamil SR and ergostat (ergotamine). The Verapamil has never had much effect in prevention. The Ergostat did seem to help for a while, my headaches terminated for about 1 1/2 years. Unfortunately, they returned last week with a vengence, which prompted an internet search and finding this site. I am now interested in finding information from other sufferers about herbal or homeopathic remedies. I've heard the herb feverfew helps. I would love to hear from anyone who has found an alternative inatervention. Again, great to hear about this site.
When I first came here, I jumped right in the MB. So now it is time to share a bit more. I think this site is great and a land mark for the promotion of CH info to others and Doctors. Also, I see a lot of holsum folks here who are compassionate, though we do have our moments of anger, it is my main after hours site.
I am 40 years of age a college student/musician/painter. I havbe suffered from Cluster Headaches since I was !^ years of age. It has taken 15 years to be accurately diagnosed even though I knew much about CHs and the treatments. I had to push very hard to get help like most on this site. I "fit" the physical appearance of a CHer. I am 6'3" in. tall
with hazel/brown eyes and a ruddy complection.
I am also a recovering alcoholic-thank "God" and actively support correctional institute problem drinkers and help those who ask. I am no Saint, but I try to practice sound moral principles. It helps with the MB postings although I fall down a lot.
Athens, GA is a musical nich and that is why I still live here. I have problems with anxiety/depression. It runs in the family. I strongly believe in the use of meds to help with these problems, including Cluster Headaches. I have two wonderful sisters though the drink way to much. Nancy, the oldest lives with her alcoholic boyfriend. He is dying and I have little hope for him. My sister has made the first step to stop drinking but she is a care taker and willingly admits her situation.
My other sister has CHs, also. She Takes Verapamil SR and so do I, including Oxygen therapy. I have a warped,sick sence of humor and love to make up spoonerisms. I am still emotionally immature since I drank for over 20 years. I used to think I had really bad hangovers, but I soon realized these headaches were different. But at the time, I never heard of clusters HAs. I pretty much diagnosed my self from info I obtained from a headache book. Took a while to get my GP to reffer me to a neurologist we worked togeather and found that Verapamil SR worked like magic as of recently. But I am really just your average Joe, But at times I feel like I am going through puberty and a mid-life crisis simultaneously!!! I plan to complete my Master's degree at Valdosta State University in Guidance and Counciling for Middle School students.
So, that is all, but darn glad to be here
Sincerely,David Chalfant dchal@negia.net
I am so happy to have found this site. Have had CH since I
was 13, dancing with the Devil one to several "clusters" per
year all during this past 37 years. Am 50 now, and just
finding out how many of you are out there. Been through the
wringer for a long time, and could have used this support
group throughout. Glad I've finally found you, and you will
definitely hear from me again.
Thank God!!!!! I've found you!!
I knew I wasn't alone in this, but I'm astonished at the numbers of us! Where does this all come from?? I am now 39 yrs old, and have just come back into the reality that I am a Cluster Headache sufferer. My first experience was over twenty years ago, and although I have just had two and a half wonderful years without a single "twinge", my cycle is now upon me. Coincidentally, my new girlfriend arrived in my life at the same time (NO correlation), and she has witnessed the Demon.
Her caring and concern have given me both this site, and greater hope in dealing with, and "beating the heck" out of these accursed headaches.
I went, armed with much of the information from this site, to my naturopathic/health store locally. I spoke in detail to the woman at the store and she was able to provide more information still.
I have stocked up on Migranon (Feverfew extract tabs - 0.4mg parthenolide), Ginko Biloba (24% extract as an oxygenator), L-Glutamine (500 mg - amino), Quercetin (250 mg - a bioflavenoid), and I have hopes that the Imitrex tabs I was prescribed will not be needed. I have been "shadowed" for the last couple of days after an all night "Screamer", which left me a shell of myself for work the following day. Having had to tell all to my superiors at work, I trudged through my day, vacantly staring at most everything that passed in front of me.
I have taken my first doses of natural preventers, and will advise of any benefits... so far the "shadow" has lessened, but then again.. that could just be a trick. We all know that this thing may just up and cause you to waste an effort or a medication at it's will. It is an evil, evil, malicious terror that we live in fear of... and it has tricked me before.
I will not take a pain free day for granted, I will live it to the fullest, as I know I would if I had no fear of CH's. I pray in my heart for relief tonight for any of you who are experiencing the agony now... be well, my caring friends.
I will undoubtedly be back and pro-active here. Looking forward to meeting fellow survivors.
I haven't had time to see all but, so for this is great. There are at lease there coworkers with the same headaches. I will let them know about this sight. The one thing that has suppressed my headaches are muscle relaxants. But not totally. I feel for everyone. Goodluck to all in there quest for a headache free life!!!!!!
It's agreat site.
Please ,do continue it!
Dinus
have been a cluster sufferer since 1976. The first one I experienced was of course, very frightening. I thought I was having a stroke. Plus, I was in a snowstorm, driving on the outerbelt of a major city in tons of traffic. The pain never stopped but I knew I had to keep driving in order to get home where I could lay down figuring it would go away. Nice thought but it didn't quite "go away" it just kept intensifying. Back in those days they were mild compared to the last 16-18 years. All neurologists I have seen are not interested and I think they just want your money. All drugs have been tried to no avail. I am now currently chewing the leaves of fresh feverfew twice a day & I think I may be able to "get out of the woods" sooner than in the past. I will keep you posted on my progress as I pray that I am correct in this. We all know how debilitating clusters are. I feel like a prisoner in my own home. Must sign off for now. Katharine
Incredible! I'm not the only one!
I began suffering from this when I was 19 (1985) and was told by parents, family and friends that it was "just" a headache. I self-diagnosed myself over the next few years and kept journals, logs and (the few) pieces of research material I could get my hands on. By 1990, I knew what "triggers", "Imatrex" and oxygen were.
Now I'm 33 and have resigned myself to this fate. I have this "thing" following me around and no one I know can understands why I take precautions they can't fathom (refraining from social drinking after work, retreating from smoke filled rooms, etc).
For some reason, every time I get one, as I'm lying on the cool tile in the bathroom with the lights out, two quotes keep coming to mind. "Jane....stop this crazy thing!" and "I am not a monster". Another quote I can't attribute to anyone in particular, but I know we have all said it over and over again..."Why me, Lord? Why me...?"
I was diagnosed with chronic cluster headaches 17 yrs ago
after 13 months of agony they finally stopped. after that my diagnosis was changed to episodic,which was somewhat encouraging. But as you all know,it's hard to find ANY comfort while experiencing an attack.sometimes all we can do is hope.
I was diagnosed with chronic cluster headaches 17 yrs ago
after 13 months of agony they finally stopped. after that my diagnosis was changed to episodic,which was somewhat encouraging. But as you all know,it's hard to find ANY solace while experiencing an attack.sometimes all we can do is hope.
To all sufferers that check this site by all means please read The Devil what an awesome description of what we go through. It is a cluster headache to a T. I just wish we could get the folks that write the New England Journal of medicine to read it maybe then we could find some relief.CH sufferer for 10 years hoping for and end to the cycle.
I have had CH for 25 years ,Only to find out what it was
CH at NYU Medical in 1982.I seem to be lucky only getting
them once a year but for 3 weeks at a time 5 weeks at worse
but everynight like clockwork .
I always had sansert with predisone and if that did not work
they added lithium.
This year and as I type.....IMITREX is the new wonder drug and it works FAST
so I am happy ,but I use nothing to prevent CH ,just to cure
the pain when it hits EVERYNIGHT ..I am in week 3
I am 50 years old. CH since 32 years. After 17 years of 12 - 16 weeks with three attacks per day, every year starting end of May (and after thuosands of more or less useless pills) I went in spring of 1984 for a six month stay to Oklahoma City. To my big surprise the usual cycle didn't start and I was pain free for the whole year. Back in Switzerland the next year the cluster started again as usual but in the following three years I made quite good experiencies with Prednisone. In 1988 Prednisone didn't work at all anymore. I recalled the Oklahoma experience ("Oklahoma is OK" !!) and rushed to Guadeloupe (Caribbean). The climate change worked again and after only three days I was out of the crisis. Since then I try to change the climate every year end of May (before the pain strats). Usually I go to Dubai (United Arab Emirates)for 10 days. After many successful years this year the Dubai trip didn't work. I am on three attacks per day since 5 weeks. Despite this setback I still would highly recommend to give the idea of a short climate change a try. Many thanks for this website DJ. Regards Fritz.
I am a 27 year old police officer and I am @ 6 weeks into a group of clusters.They are getting less severe and I am hoping the end is near. This is the first visit to this site and it is great to hear from other people who get the CH.I am currently using imigran subject injections and the are working great for me. I hope you all find the relief you need because no-one deserves this pain in this day and age. Thanks.Bye
LIVED IN WICHITA KS MOST OF LIFE AND NEVER MET A CH SUFFERER.
GO JAYHAWKS................
i have had these headaches since i was a teen im 37 now.
Just another Prisoner of the band
The Devil always seems to win!!!
Love to hear from other prisoners of the band that understand the pain .
I have been suffering with clusters for 24 years. The only relief I have found is ergotamine suppositories.
However I am afraid I am over using them.
I am 32/F Louisiana, suffering from cluster headaches for
6 yrs. Worse than child birht, I find cheese, ham, over heated, all make them worse. I get them 2-3 times a day
and they are now lasting 2-3 hrs. Imitrex Injections and Stadol Nasal spray is the OLNY thing that helps. Also cold compresses help ! I would love to hear from anyone, hey we should have a cluster headache meeting. Anyone know of any Doctors that deal with only cluster headaches in the Tenn area? I am also a nurse.
Hello!!
My wife just found this web site. WOW! It is strange to read exactly what I have felt for years.
I have two questions, does anyone else hace these headaches seasonally? Has anyone else had any success with
accupuncture?
I am 26 years old. I have been suffering from Cluster Headaches for 16 years. I was just diagnosed six months ago with CH. The headaches have been unbearable the past five years, since I've been out of college. I have been on every medication you can name. I had success with Xanax 2 mg three times a day along with Talwin six times a day. This worked for three months. The headaches came back. I guess I became immune to the medication. I have tried every preventive medication there is on the market. Nothing works. I am convinced that the headaches can't be prevented. I am seeing a doctor at a pain evaluation center in Dayton, Ohio. Currently I am taking Morphine. This is making me severely depressed. Work is suffering badly as well as personal relationships. I don't know where to turn. No one can feel my pain or relate to the pain I am having. Does anyone have any suggestions on medications - specifically narcotics - pain killers. Please advise!
Sincerely:
Mike Robinson
My clusters just started after 2 yrs. of pain free living. I had forgot how bad it could get.
Excellent site - keep up the good work ... My own thoughts:
I'm 37 this week, and have suffered CH since I was 20.
My bouts usually last 6-12 weeks, and occur roughly 12-18months apart.
I've tried most of the usual preventative treatments over the years, including Ergotamine, Lithium, Caffergot etc..
By far the most successful has been Verapamil, prescibed by Dr.Blau at the City Of London Migraine Clinic (+44 171 251 3322).
He and Dr.Engels specialise in this condition (I believe).
I realise Verapamil doesn't work for other people, but it has greatly helped me continue to lead something of a 'normal' life during a bout.
The maximum dosage I've had to reach is 240mg/day, and it can take a few days to take effect.
I've now started my 3rd bout using Verapamil, so I do have a short history of 'success'.
When I have not ramped up the dosage quickly enough, or if I reduce it too quickly and have a bad attack, Oxygen is my standby option, although its impact varies.
I accept that, like others, my CH tolerance to Verapamil may change in time, but so far so good.
Also Dr.Blau tells me he has other patients on much higher dosages!
I'm not sure what the safe limit is - anyone got any ideas ?
Finally, let me iterate how comforting it is to be able to converse with fellow sufferers.
Kind regards, Mark Trinder
I have been a sufferer for 15 years, would love to find a doctor in Australia who suffers as I am getting no help from most doctors i have seen. Thanks for your help great to communicate with someone who understands.
Been suffering for 8 years now, with no relief in sight. Doctor says I am ready for a temple nerve-ending block. Has anyone ever had this surgery? And is it effective?
My husband has had cluster headaches for twenty years and the only thing that keeps him at bay is Prednisone. He is currently on 5mg every other day and has been since winding down from his last bout. He has tried to stop altogether for the last two weeks and as usual felt a tinge and started back. He has been very nervous and anxious with tight muscles. He was prescribed Xanax,Paxil and Ambian for insomnia. We are concerned about the long term effects of Prednisone. Any comment from anyone? Thanks.
I am grateful for this site. My 18-year-old son appears to be suffering from cluster headaches and so far doctors have been no help. I went on the Internet, looked at headaches, and found this site. The descriptions etc. sound like what my son is suffering and I have printed it out to take to the doctor. My son lives in NW Indiana. If anyone there knows of a doctor familiar with Cluster headaches please let
my parents know at newsguy@juno.com
I'm a 27yr old mom with two kids. After my 2nd baby was born in feb. I began having attacks. Its taken 5 months for my doctors to figure out what was wrong. Since I suffered a minor stroke in march they were unsure and I've bounced from medicine to more medicines till I was finally put on verapamil Its wonderful to know I'm not crazy or alone in this pain.
I have suffered with this for years but then my doctor gave me Imitrex,
What a godsend. Then I became disabled an had to depend on the Vetrans Adminestration Doctors.
When I told them that My private doctor Prescribed Injectible Imitrex They acted very surprized.
Needless to say I'm now suffering with no reliefe in sight as they will not prescribe it for private use and I can no longer afford it.
You'd think that the doctors of the Veterans Hospital would be educated enough to know that this drug is one of the effective reliefes we have.
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