Hi Vicki,

I'm really sorry to read about your troubles and on Christmas no
less. I am glad, however that you are reaching out for help and
support to the group.

It is frustrating. Believe me, I know. I am right there with you. I
have tried 6 kinds of meds from beta blockers to anti-epliptic drugs
and anti-depressants. I am still experimenting with meds to find
something that works with tolerable side effects. My most recent med
was Lamictol, which I had moderate success. It did "kill" the
irritation but it gave me another type of headache from the med
itself. So, it was a trade off. My next med is Lyrica, which has been
successful for nerve pain however I am weary of the side effects but
I'm going to give it a try after the New Year...

I have posted the available research that I have been able to find on
this site under Files so take a look there and you can read what I
have found. There isn't much out there and everyone seems to say the
same...keep trying to find a med that works for you. Others have
hailed Botox as the only thing that provides relief, however I've had
2 doctors refuse to treat me with it saying it wouldn't work for a
CNS problem.

How long have you been suffering? The one other common message I have
received from doctors is that it will eventually "fade" away. I've
been suffering myself for almost 3.5 years so the idea of it going
away is a welcome one albeit I don't know how much longer it will
take. I suppose it relates to the severity of the damage, although
nothing can be seen or detected via available testing.

No one seems to know what the exact mechanism is that causes this
after meningitis, but you are not alone and it does exist so that
should provide some comfort I suppose.

I truly hope that you can find something that works for you and I
urge you to not give up hope. If it means making adjustments to your
life to cope, do it. Life is too short. I myself left my job a year
and half ago and I really don't know when or if I will ever be able
to have a "regular" job like I used to again - at least not until I
am able to have a more stable condition. It is still hard for me to
accept this, but the best I can do is focus on what I am grateful for
and make the most out of it!

The other thing I am doing is being seen by a pain specialist at a
pain management clinic at a hospital. They apparently have a multi-
diciplinary program to help people manage with chronic pain so I am
looking forward to starting this in the new year. I will be sure to
share any insights on what works best.

I think the best you can do is try to find what works for you
personally. Identify your triggers, find ways to keep yourself
comfortable and occupied, focus on the positive, do nice things for
yourself, take relaxation breaks, meditate, take baths, get a
massage - whatever it takes!! and educate yourself as much as you can
so you can get to the bottom of it and last, the most difficult is to
accept it, accept your limitations and take the best possible care of
yourself that you can including diet, exercise, supplements, yoga,
etc.

The last thing I would say is to find a doctor that is familiar with
this condition so that you are validated and that you have a medical
care giver that can work with you and not against you. That is very
important.

I hope this helps you in some way.

I wish you a Merry Christmas and a better New Year. I hope that you
can find some good in the holiday and focus on that.

All the best to you - and please know that you are not alone!

Warmest wishes,
Laura

--- In PostmeningitisHeadache@yahoogroups.com, "vyatesrn"
<vyatesrn@...> wrote:
>
> 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
>