Posted by Tortuga on January 22, 1999 at 12:29:30:
In Reply to: speaking publicly about clusters posted by linn mosley on January 21, 1999 at 19:24:09:
From a technical perspective, I think one of the problems we face here
is that most drugs being used for CH appear to be tested and designed for treatment
of migraines...and were by and large limited to uses of 3-4 times per month during those trials.
I myself am having difficulty getting presecriptions for certain rescue meds
which offer at least some modest benifits to my symptoms (e.g. MaxAlt and naratriptan-Amerge)
The prescriptions may also be the tough part, let alone whether or not insurance will pay
for it. I am all for your efforts, but think
the problem we face is one of liability perceived by both manufacturers and physicians.
In my opinion, we need to advocate sophisticated, well-desgined, multi-faceted clinical trials
to help all CH sufferers. Aside from drug companies and FDA, NIH may also be a potential place
of contact here, I don't know.
I am personnaly somewhat doubtful of my desire to take these medications
without some form of clinical trials which can assert their safe use.
I will admit though that for me that was a mark crossed long-ago...
I fantasize these days about having a 55 gallon drum of rescue pills, given to me free
of charge where the only thing I have to do is lket them know how long I live or die,
without a headache!
Good Luck...I'll keep looking for any info you post, and would be willing to join
a letter writing campaign to help these efforts...