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Posted by Simon on February 06, 1999 at 19:21:53:

Dear All,

Haven't posted for a while, so making up for it tonight!

I've been far too busy watching the fur fly in every
direction with the recent postings. Without being too
provocative, (if that isn't an overused sentiment at the
moment), I think it may be a positive sign. The site
seems to have become more than a place for swapping
ideas and medications, and has acquired more of the feel
of a family, with petty jealousies, scoldings and making-ups.
Having been around virtually since the site started,
it now seems like home (I almost get withdrawal symptoms
if I don't visit at least once a day). Don't let's lose
that little edge that keeps us on our toes, and gives us
something else to think about. Especially welcome is the
humour.

Anyway, to weightier matters, some arising from recent posts.

National reactions to pain came up, which set me thinking
of a question I haven't seen aired before. Is there a
racial element in clusters? It's obviously impossible
to tell from posts whether people are black/white, Asian
or whatever, and clearly one has to be careful making
assumptions from names. We've noticed a higher number of
women than we are led to expect, but what about ethnic
background, which certainly affects some conditions? Even
then it may be skewed by computer usage, but with a group
as large as this, we might be able to find out a few things
that the doctors have maybe missed.

Verapamil has come up a lot recently, and I've been experimenting
with my dosage. I found that when I forgot to take my night-time
dose, I missed on a couple of occasions. So I tried leaving
it out more often, and concentrating on earlier in the day.
It seems to be working - only two night attacks in three
weeks (normally at least one per night). Any thoughts on
this? (I'm not happy about stopping altogether yet, as I know
there are risks there).

Any more on Diflucan? We can get it here over the counter,
and I've tried the single dose a couple of times. Each time,
it seems to have affected my clusters, but that may be
luck or pschosomatic (not that I believe the latter). If all
the people who've tried it are no longer visting the site,
maybe that tells us something!

Hoping we all have a good night.

Simon

(PS. excuse the UK spelling!)



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