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[Guest guest]

Hi my name is . I have been treated for pseudotumor celebri

since 10/31/07. I'm on diamox and topamax. My headaches and

pressures are not coming down and I am having other symptoms not

explianed by the pseudotumor (for example cognitive imparement) We

were told by another friend that she was incorrectly diagnosed with

PTC when she really had Chiari. So that is where we started to do as

much research as we could on chiari. My symptoms more closely match

chiari then PTC but we will have to wait for a diagosis until all the

tests are done at the apointment with the chiari istitute in

september.

So I am in extream pain and my doctors do not want to give me pain

medication because of " rebound " headaches. I do have a small number

of pain pills for extream pain when i can't take it anymore. SO if

anyone has any good tips for pressure headache pain managment I'm all

ears. Its so bad that i dont want anyone to touch me. Including my 8

year old daughter. I've been having a spnal tap about every 4 weeks

to keep the pressure down in my spine.

Anyway I think I'm rambling. Well it is nice to meet all of you and

to finally find others that have gone through the same thing as we

are going though now. It is so hard to wait for the apointment and

for answers but it is the first HOPE that i've had in a long time so

I guess that is worth waiting for.

Sincerely,

from Missouri