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Posted by Ted ( on May 04, 2000 at 01:25:37:

In Reply to: Questions posted by Rebecca T on May 04, 2000 at 00:51:58:

1) I tried the capsaicin cream, I forget what strength. The heavy strength. The only thing I agreed with was that as the days wore on, the burning sensation would dissipate. Unfortunately, the attacks didn't change.
2)You may want to try something other than pain killers (persay) and try things that kill pain by acting upon the very things that are causing the pain. Many of us take Serotonin-in-wolves-clothing like Imitrex, Maxalt, etc... to mimic the neurotransmitter burps we suffer with. That seems to help a lot more than trying to mask it, which never masks it. Also, Oxegyn is a great thing to look into. It tends to drowned hell with it's purity.
3) I've found that aspirin moves to the potentially toxic stage when I've taken enough to put a small dent in the CH. Unless, of course, you're talking about shadows.
4)That's really a question that you should check with your doctor no matter what else is said (as are your other questions).
I will say this though, Many of us are, or have been, frustrated with our doctors who don't know much about CH. I used to bitch all the time about that here. I probably still do often. But at least I now have it ingrained into me by others who deal with that that we should just understand that they won't know much of it. But rather than taking the negative attitude and giving up, it behooves us (at least those of us with hooves) to educate them on it and even, hopefully, spark an interest in them to learn more about it. But if our doctors don't know a CH from a migraine, and if we think that they are generally good at what they do, teach them about it. Give them resources to learn more about it.
OK. My stomach is twisting from saying all of that in defense of ignorance to our condition. My neuro sucks too. Uh oh. I'm going in defense again. My neuro sucked BIG TIME. But I was her first cluster patient. I stuck with her from loyalty. Well, that and she was the only neuro within 50 miles of me that was covered by my insurance. I stopped seeing her for a year because my insurance ran out. I went back recently with new insurance that only accepted her too. In that year that I didn't see her, she apologized for sucking. And she learned a lot. Unfortunately not enough to get me any relief yet. But she's trying. For a long-term investment in a doc, that's what I want. Someone who tries and educates herself whether I'm paying her or not. In the short term, I want the all knowledgable.
What was your question again?

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