I'm so glad I found this site!

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Posted by Lena ( on May 22, 2000 at 23:18:00:

Hi everyone

I just wanted to say that I am so happy to have found this site where fellow sufferers of cluster headaches can get together and interact. I thought I was alone in this because I have never known or heard of anyone else who suffers from clusters, but now I'm hoping to make some new friends through this site who understand what it's all about. I do have to say that my family and friends do sympathize but it's so hard for them to really understand. I have been afflicted with this condition for about 10 years now and I still have yet to find any real help for it. Initially my doctor didn't believe me when I told him my symptoms so eventually he started prescibing me placebos, then he was convinced it was due to sinus problems. Needless to say I'm not seeing him anymore. I eventually found a neurologist who was understanding about my symptoms but the meds he had me on (sansert, ergotamine, and now zomig) were not effective and had side effects. He has me on Tanacet (feverfew) and it seems to work, it's a preventative med. I have been taking that for 2 years but lately I've been getting my headaches again though not as regular as I had them prior to taking Tanacet. These headaches during this particular episode don't happen everyday like they have in the past when they would go on for 3 weeks straight. But that doesn't mean the pain is any less excruciating during the headache. I did go to E.R. but by the time a doctor saw me of course my headache was gone so they could do nothing for me. I think that the Tanacet does help but I'm beginning to think that I have a remission period of 2-3 years and once that's over nothing can stop it. I feel lucky in that respect though because I know there are people who are chronic. I could not even imagine how I could deal with that, I have the greatest empathy for those who are chronic sufferers.

So anyway I hope I haven't been rambling too much here but I felt I needed to say it, especially to people who understand how it is. Please feel free respond to my message or if anyone has any advice or just wants to communicate with someone I'd be glad to.

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