Hello,

First let me say I am very sorry to hear about your daughter's
difficulties. I personally created this group out of hope that I
could also find some answers to this "mysterious" condition. I'm sure
you have read the entries on this site already, but if you haven't I
suggest you do to get some insight on what others have shared.

Another source of info is the Files section where I have uploaded the
available research (that I am aware of), to get some idea of the
scientific side of it. Sadly, there is a major lack of information in
the scientific community and also regarding effective treatment.

I personally have been seen by six neurologists and am currently a
patient at a headache clinic in Denmark. I am an American living
here. My doctor is an authority on headaches and respected worldwide.
Interestingly the doctor of another member's child that also suffers
from postmeningitis headaches quotes my doctor's work on his web
site.

What my doctor has told me is that it is a rare condition that does
exists in some people that is not very well understood. It could be
an inflammation problem, a chemical change in the brain or scar
tissue. There is no way to test it via EEG, MRI or CAT scans or
spinal taps. I have had four spinal taps and also had a rough tap (it
did not cause spinal cord injury - that is just terrible and I'm so
sorry for your daughter that she suffered that), but I did have to
get a blood patch.

Anyway, the official headache category is "postmeningitis headache"
and mine is chronic – meaning I have it 24/7. I have tried 6
different meds and nothing helps (although one called Lamictol did
help some despite a headache as a side effect). I cannot take
triptans or other migraine medication for pain as they only make my
pain worse. I am also desensitizing to regular over the counter pain
medicine since it's been 3.5 years that I've taken it regularly.

I've tried all kinds of alternative treatments and am currently in a
new acupuncture and acupressure treatment program and I will start a
pain management program at a hospital here next week.

I'm afraid there aren't many answers out there because it's an
unknown condition that is hard to treat and is one of those headache
categories that can be resistant to treatment (well, in my case
anyway)!

What I have also been told is that it will go away - eventually. My
doctor said he's never seen a case that has lasted for more than 10
years. I also have a hard time with sports - or fitness - I continue
to try new ways to exercise to find something that does not irritate
my head and sometimes it's ok, other times it's not. But, hard,
strenuous exercise most always makes things worse. I recommend yoga,
Thai chi, swimming (another neurologist said swimming is good for
people with brain injuries), walking and other mild fitness to help
the nervous system calm down. I also do relaxation sessions every day
with the use of a soundtrack and headphones.

Others have touted Botox as the only treatment that is effective but
I have not tried this yet. It is extremely expensive and 2 doctors
have told me that it will not work because it is used for tension
headaches and mine is related to a central nervous system problem.
I've had conflicting information given by numerous doctors so I'm not
hanging my hat up on this quite yet.

I hope that your daughter is able to find something that helps – that
is the key. Find something that works. Take the best possible care of
your health including diet, supplements, exercise and relaxation. Be
patient, have faith that it will get better and if necessary, find a
new way of living that enables her to have a life that accommodates
her problems. It is not easy to accept, but acceptance is an
important step in the recovery process.

Like I said, it will be 4 years this year for me and I left my job as
an international public relations manager two years ago. I am 35
years old and my life has changed completely. It is still hard for me
to accept, but I do the absolute best I can. There are days when the
pain gets the better of me, but I keep on keeping on and continue to
have hope that it will "fade away" in the not too distant future. In
the meantime, I keep myself occupied with positive things and am
learning all I can to get better.

If your daughter is already in a pain management program, that's
likely the best possible course of treatment she can get and the best
way to go. If all else fails, you might consider Botox!

Keep us posted on her progress.

All the best,
Laura





--- In PostmeningitisHeadache@yahoogroups.com, "crickett5h"
<crickett5h@...> wrote:
>
> My daughter was hospitalized with viral meningitis on Oct. 10 of
this
> past year. She was rehospitalized Nov. 15 for continued headaches
> that increased in severity until she collapsed at the Pediatricians
> office. She had originally missed a week and half of school, and
had
> returned to her normal schedule and activities (not sports), but
the
> week the headache increased in severity she had started sports
> again. So I think it triggered a flare up? Unfortuantly we then
had
> a bad spinal tap that resulted in her transport to Dallas
Children's
> with a spinal cord injury. After spending 6 weeks flat on her
back,
> and homebound with school since Nov. She is now up and doing
physical
> therapy. We are hoping she can start the new semester at her high
> school next week. However, she is still having severe headaches!
> She is under the pain management team at Dallas Childrens, and the
MD
> stated that "she had a severe case, and will have a year or years
> recovery" But this group was brought in to help with the back pain
> resulting from the spinal injury. The neurologists turned
everything
> over to this group, and I'm just not satisfied with the answers I'm
> getting. My daughter has always been a very atheletic kid, and is
> extremely frustrated by this chronic pain. She doesn't complain at
> all, so I have to take it seriously when she does....the day she
was
> first hospitalized with meningitis, she played a full volleyball
> game, refused to come out, then later collapsed from the severe
> headache I didn't even know she'd had. Then I found out she'd had
> the headache for 2wks by then. I'm an RN, so I feel horrible about
> all of it, and I'm really not sure where to turn next. Her local
> pediatrician said it's over his head, and the Neuro team turned it
> over to the pain management neurologist, and they don't seem to
have
> any ans. about how long we can expect this to continue. If you have
> any advice, please help. Nothing I read really covers this, and
I;m
> out of my league.
>
> Thank you!
>