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Cluster Headache Help and Support >> Cluster Headache Specific >> treatment
(Message started by: john381 on May 26th, 2008, 5:14am)

Title: treatment
Post by john381 on May 26th, 2008, 5:14am
i have had ch now for over 6 years , took all the drugs,immotracts works but i end up haveing to use 10 injections a day , oxygene works to , ive had a ballon surgery on the right side of my face , it didn't help, 2 mouths ago they went into my head with a needle to deading my nerve it didnt work last week i underwent the same surgery, now i'm healing from that and in july im going back, and there going to cut the nerve , has anyone had this surgey i would like to know how it worked for them

the imitrex , what i did was i got a persciption for 2 shots a day , for 3 months sent it into my insurence company and they would sent it 2 my house for 20 dallors my copay , i could take predison 30 mg a day and get down two a few headaces a week , i went from 150 pounds to 200 plus , broke out, had a atitude, so i would back off the steroids and use the imitrex , i found that the first day one shot would work, the next day it was two or three shots , by the forth day i was around 10 shots, after that i would feel like my head was like a bubble head inside , the next day i would feel great no drugs normal feeling , then i would go to sleep and it started all over again , the drugs im on right now is dhe , i take one injection a day it works for about 18 hours and i,ll have a light headace , for 5 mins oxygene will abort, the next one 15 mins, an the third one reel bad , but oxygen works , i have trid the shot at 18 hours , and dhe pills but it seems i can only shorten it by one headace , ????? for you all when i have a iv i feel so good no headaces and one more it seems painkillers when i have a headace dont work but if i hit myself with a shot of imitrex , the painkiller works then, ive found myself going into the emergency room getting druged up going home wakeing up to a reel bad headace no affect of the pain killer takeing a shot and the painkiller would hit me again ,
i tried votox into my head from my forehead halfway down my back , it was no help, also the ballon comprasion on my right side of face on my trygenitel neave, no help, 3 neck injection sergerys , but they found out i would get the same affect just shotting the steroids into my arm , now a had two surgerys into my head with a needle to burn the trygenitel neave , the first one was 6hr long he had trouble because he puts the needle up threw the neave in the side of you face and go into the crevist inside you skill but he had a hard time due to my neave being scared up due to the ballon surgery , the secound one didnt work , ive been given 3 choices now , drill a hole into my head and put a election inside , it experamental , the next radeation to kill the neave or , put a hole behide my ear and cut the trygenital neave

Title: Re: treatment
Post by seasonalboomer on May 26th, 2008, 6:17am

That's a lot to lay on a group in the first post. Can you give us some greater background with regard to your headaches? Some of the information you've given so far seems kind of far out to be honest. 10 injections a day? Unless your physician told you nothing (or pharmacist) this would be way outside of the guidelines for use as well as way outside of what almost any of us could get through insurance or for that matter afford otherwise. The balloon surgery? I thought that was more of a "procedure" than invasive surgery. The "Needle in your head" doesn't sound consistent with nerve blocks I've read about.

As for more surgery... Have you ever had a doctor prescribe preventatives instead. Verapimil, etc...

We're primarily a support group and not physicians, so please measure the feedback you might get.

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