Posted by Liz (198.147.175.4) on July 21, 1999 at 08:47:27:
Hello all - well yesterday the doc said that I do have CH.
She said it is just "very severe". The symptoms I
am having are because of the amount of pain I have the
pleasure of being in. :0) They are a bit concerned about
the fact that it has not subsided at all since the start,
and about the fact that nothing is even touching it. So
in their ever so wise opinion they have opted to just up
the dosage of other stuff. I get to take Verapamil (40 mg)
four times a day, and 75 mgs of amytryptaline (not sure of
the spellings on these rx's) at night. And I get to go and see
a pain specialist who can tell me that I am in pain.
Now for all of you who are going to tell me again to
get another opinion - I must first say I have been to many
docs. Now I am at Mass General and they have some of
the best brain docs out there. And I assume if I keep
yelling at them (as I had the pleasure of doing yesterday)
they will eventually figure out what is wrong.
For now I suppose it is time to take a deep breath and
learn how to live like this. How to make sure the pain
does not control my life. How to start writing again and
finding joy in the things that bring pure joy.
As a side note to add to the question of lying down or not -
I do reach a point of daily exhaustion where I must lay
down and get that 2 - 4 hours of sleep before it is time
to wake up and be greeted by the wonderful feeling of
needing to stick my head in the toilet.
And if any one knows where I might be able to get a brain
transplant - I would greatly delight in that information.
Liz
P.S. - Yes this is filled with sarcasm - see if you
can figure out where it lurks in the text. :0)