Vicki,

Our daughter Mallory was seen by over 40 Drs. till we got to one that
understood her post viral encephalitic headaches. (18 months and counting) As
you
have found out, most Neurologists don't even like to acknowledge that there is
such a thing.
They usually just attribute it to some Psychiatric problem.
(which is a complete mystery to me since I can find it in the literature easily
- I guess they don't
want to mess with it because it is so resistant to treatment)

The only thing that has worked reasonably well so far is botox. I don't know
what we
would have done without it. Mal is also on neurontin which seems to help as
well.

The great news is that in about 70% of all cases Botox works. The other good
news is that
you will never look more beautiful. :)

One point to remember; the first time Mal was treated, it did very little, but
the 2nd time it was very effective.

The bad news is that it isn't approved by the FDA for this indication, so it is
expensive. But
I at this point, we really don't care.

We see Dr. Alexander Mauskop at the New York Headache Center.

Above all remember, this too will pass.

Blessings,

Andrew

________________________________

From: PostmeningitisHeadache@yahoogroups.com on behalf of vyatesrn
Sent: Mon 12/24/2007 5:51 PM
To: PostmeningitisHeadache@yahoogroups.com
Subject: [PostmeningitisHeadache] Hello Group!



Hi guys!! I, too, am a viral meningitis survivor with crippling post
meningitis headaches. These things have taken over my life and in a
very short time, pretty much ruined it. I am an RN and unable to
function as one due to not only the headache pain, but tingling and
motor contol issues in my extremities. I basically don't trust myself
to take care of patients at this point. I have felt so alone for
months now and had about decided to agree with my doctor and put the
headaches off to hormones and stress!! But, something in me just kept
saying (actually screaming) -"THIS IS NOT STRESS!!!" However, since
all of my tests come back normal, my doctors have sort of written me
off. I am at my wits end with this!!! Any suggestions, hints, names
of doctors that can help, etc would be much appreciated!!

Sincerely,
Vicki