Posted by Carl Hill on May 12, 1998 at 21:24:40:
Hi All,
I'm apparently a little luckier then most.
My cluster period occurs every TWO years for about
two months. It peaks for a two/three week period
with three attacks a day being common. Some nights
are headache free, but mostly I get the 1 AM killer.
Last Sunday night I had three killers in a
row. I got about 1 hour of sleep total. I actually fell
asleep sitting up, indian style, with my head in my hands.
But this cluster period hasn't been the worst I've had
and I try to keep that in mind. The lack of sleep is
one of the worst side affects of this little beauties.
So, I'm on Imitrex, injectable 6mg, and I've
aborted a CH with chemicals for the first time. I have been
using cold outside air at the start of the period, when they
were weaker, but it's not helping now. I'm having a
a struggle with my Health Insurance with getting oxygen.
It helped in the ER once and by the time I get the OK,
I'll be over the main attacks. Next time I'm going straight
in and asking for a bottle right away.
I've had these things since I was 17, and I'm 35
now. Because I had a two year cycle, it took forever to
figure out what was going on. I felt like I was going crazy
until a friend gave me a book on migraines,
that had one little chapter on cluster headaches.
Everything the book said about them, I was saying,"Yeah,
I have that" or "I figured out that helps too."
Lastly, on the difludican(sp) theory/testimony,
I feel that having been mis-diagnosed 99% of the time
it's quite possibly that the drug helps in ways not understood.
Since I certainly less chronic then most, I willing to
wait until it has been tested and reviewed properly.
I don't easily believe any "medical conspiracy" theories,
since these are derived from the idea that drug companies
want to make money. Sure they do, so wouldn't the people
that make difludican(sp) want to sell more of their product.
I find it easier to believe that seratonin(sp)
plays a significant role. Since this little bugger isn't
easily understood, there might be a range of seemingly
unrelated therapies that help CH sufferers.
It would also be understandable that some people
with candida infections have been misdiagnosed as
CH sufferers. It's still a black art. As long
there are patients willing to try anything, there will
always be new therapies.
Good luck to all and I hope to see you in
remission.
See ya,
Carl Hill