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MY HUSBAND HAS BEEN SUFFERING FROM CLUSTER HEADACHES FOR ABOUT 7 YRS. HE HAS BEEN TO 2 NEUROLOGISTS, 2 GPS, 1 CHIROPRACTOR, 1 HYPNOTIST, 1 ACCUPUNTURIST AND NO RELIEF. HE DID TAKE TOPOMAX, SHOULD BE CALLED DOPEOMAX, IMITREX, THE ONLY THING THAT HELPS SOMEWHAT, AS LONG AS HE CAN CATCH THE HEADACHE WHEN IT STARTS, USUALLY WHEN HE IS SOUND ASLEEP, THEN ITS TOO LATE!!! ANYBODY OUT THERE CAN HELP US? PLEASE, LINDA H

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To Linda,

I have suffered with cluster headaches for years. I have been prescribed many types of "preventative" medications in an attempt to stop or limit the number of individual headaches or length of headache cycles. Everything from Beta Blockers, Calcium Channel Blockers, Prednisone and Ergotemines. None have been very successful. Narcotic type pain medications such as Soma Compund (muscle relaxant), Soma w/codeine, Hydrocodone and even Thorizine and Demerol injections to combat the pain. The presription pain medications seemed to help the best, but the associated side effects were a negative. Doctors now days shy away from prescribing narcotic type pain medications for Cluster headaches because of the potential for dependency of the drugs.
One thing I have found that helps is to hold an ice compress against my head in the area of the pain. This seems to lessen the pain somewhat during the attack, but if I remove the compress before the headache subsides, the "full force" of the pain returns fairly quickly.
The sad fact is there is no cure for cluster headaches and, in my reaseach, few sufferers rarely gain any substantial relief from "preventitive" medications.
The good news, however, is that research shows that cluster headache cycles deminish as one ages.
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Hi Linda ,
I suffered with cluster headaches for 20years fronm the time I was 13 till thirthy three , Thank god I havent had an episode in 14 years
except It felt like it was coming on the plane a couple of times in the past few years but never actually did. I took every medication possible , I tried oxygen that also didnt help , they had me on medicne after medicine with no help , finally after they gave me thorizine which is a pill for violent metal cases I decided to quit going to doctors , I Finally had to go back after a few years to try to find some relief.
They gave me predinsone for a few months and they finally went away , but in that same time I quit drinking alcohol altogether because I think alcohol triggered them . I also quit smoking which again I believe is a trigger . Ice packs and chewing on some sort of a towel was the only thing I could do except roll on the fl;oor to help the pain, at one point I had them at least 20 times a day for aorund 15 to 20 mins each time they were constant day and night I Couldnt work and sometimes couldnt go out . thanks god mine have stopped but I never know if they will return , I will pray for you husband because I know how painful they are , no one can understand unless they had them , its not like a regular headache. its like a burning poker going thru your face and head . If he smokes or drinks tell him to stop I truuy belive they are the possible culprits, good luck jackie
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My understanding is that substance abuse such as smoking and drinking definitely helps contribute to it. Does anyone else know if there's information on this?
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Low testosterone can also play a roll. I have my husband on testosterone cream. He is only 32 has been suffering from cluster headaches for 2 yrs and I work in stem cell research with docs that specialize in hormone replacement compounding. We will give it 3 weeks hopefully it will help ... He's suffering from onright no now :(

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I"ve suffered for 13 years. Same story: been to multiple neuros, maxilliofacial specialists, chiropractors, osteopaths, etc., even went to a psychic once; nothing worked. It was excrutiating and made worse by constant experimentation with drugs that affected my kidneys, liver and cogitive functions. Finally I came across clusterbusters. A message board by CH sufferers for CH sufferers. Apparently, there is great success with psilocybin - the active compound in magic mushrooms. 

If you have CHs, you will try anything - not only to get rid of the terrible pain, but also to avoid taking all of the horrible medications prescribed by doctors who really don't understand the disorder. After 13 years of episodic cluster headaches, I haven't had even a shadow of pain for over 7 months. It is remarkable what a little cup of tea has succeeded in acheiving! I will never regret taking my health into my own hands.

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