Posted by Todd Owen (188.8.131.52) on February 07, 2002 at 16:12:01:
Well guys, I see that the time has come to find somewhere else for help and support. Things have changed far too much around here for me to even think of posting any more after this last one, even with as rare as I post. I used to read the MB a lot, people spent a lot of time trying to disseminate information about clusters and trying to support each other when the cycles get rough. I can see that's gone.
I'm at one of the roughest spots ever since I went chronic 2 1/2 years ago. I posted the other night while I was trying to fight off the beast in the middle of the night. I got a couple of messages of support, but the posts from people who seem to be the main posters on the MB were very critical of my choice to not experiment with drugs they consider 'benign'. After seeing the results of using such drugs firsthand and having family who dealt with it firsthand on a regular basis, I refuse to experiment. I guess the first reasons I gave weren't enough to give anyone the hint that was how I felt.
After dealing with the doctors and nurses who try to treat me when I am having a bad attack, I have learned that doubting someone's level of pain is akin to accusing them of lying. I have seen countless people post on this MB claiming to have found a med, herb, or snake oil treatment that worked for them, so try it for your CH! It seems rather hypocritical for people to bash those posts and then advocate a treatment that has no scientific data to back its effectiveness versus risks. Experimenting is not for some people; others cannot understand why one wouldn't experiment. You may be passionate about how well something works for you and how well you think it might help someone else. The snake oil salesman are the same way.
I have been told too many times what I need to try to get my CH under control and break the cycle. I always take the advice with a grain of salt, and a big one at that. Chirpractic, acupuncture, chinese herbs, this particular incense, that meditation practitioner...how many times have you been told to try these things by someone well-meaning while you are in the middle of a bad attack? Why didn't you go try them? Those cures are quite 'benign'. The only thing I have ever advocated to anyone is to find a doctor you like who is knowledgable and wants to help you. The usual meds they try are listed on this web site. Some might work, others won't, the results are different for everybody. At least the medication purity, side effects, and legality aren't in question.
All in all, so long. The education and support once found have disappeared. Good luck to all the other clusterheads out there, whatever course of treatment you choose. I wish this beast upon noone.
P.S. BillyJ, if you don't want to offend someone, don't use coarse language which says they can't be making things out to be as bad as they are.
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