Posted by Greg on May 21, 1999 at 01:43:26:
Last night I was "speechless" but I've gathered myself
and my thoughts since then. Please allow me to introduce
myself. My name is Greg, I am 27 and am two weeks into
what should be a six week cluster. This is my fifth in
7 years. I have never thought of myself as fortunate in
my condition until last night when I learned there were
so many so much worse off than me. This group is amazing
and what DJ has done is as close to a Godsend as it gets.
I hope you could all indulge me in answering a few question.
First - Personal
How have so many of you managed to continue your lives
in the throws of a cycle? Everytime I have a cluster I
practically drop off the face of the planet. My sleep
pattern is violently thrown around the clock - take it when they
will let me have it. Any suggestions on how to bring
that around would be greatly appreciated.
Medical
I was diagnosed in 1990 and have run pretty much the same
med cycle as the rest of you with varying results. Prednisone
and Sansert were effective but my body could not stand
the side effects. Midrin, imiprimin, and the others
had no effect. I had great hopes for the oxygen this
time but to no avail. My savior is the imitrex injections.
I get four headaches per day and my neuro says no more
than two injections per day, period. Clearly that is two
too short and makes for some very long nights. Has anyone been
taking more than this for any extended period of time?
I was also recently started on wigraine (ergotamine)
twice daily. I am very concerned about this since most
of the literature recommends less and not to be used with
my imitrex - which I WILL NOT give up. If anyone has
been down this path I would greatly appreciate hearing
how it worked out.
I am sorry to be so wordy but I haven't really had anyone
to talk to about this before. Now its like a volcano
erupting and I can't hardly get it all out corehently.
Thank you all for you patience and if I can do anything
(including not posting such long messages) to help anyone
for a split second of relief please do not hesitate to let
me know.
I hope you are all sleeping now and not doing the dance.
-Greg