WOW

Hi everyone

i am so relieved to find a place full of people are in this same
boat!!  When all my doctors and Neurologists, and hemotologists, and
everyone i talk to seem to doubt my post menangitis Headaches...i
didnt know what to do...  SO crippling, and almost impossible to
function while they are taking place.  These Headaches are ruining my
life

I am 29 Years old and a married father of 3 Kids, my Youngest being
Autistic.  I USED to be very athletic and very very active.

It all started in Late September when one day i thought i had a
REALLY bad Sinus Headache.  After suffering all day, it finally made
me Physically ill.  I walked to my bathroom to be sick and as i
proceeded to strain to vomit i thought someone stabbed me in the
temples.  I then colapsed to the floor, Screamed, and almost blacked
out.  I tried very hard to keep my self from passing out, as all i
could think about was my kids finding their dad passed out on the
bathroom floor.  As i crawled out of the bathroom on my hands and
knees i came to the realization i think i just had a stroke.

My wife had woken up when i screamed right before hitting the floor
and i refused to let her call 911 i drove myself very irresponisbly,
about 1 mile to the hospital where i was admited to the ER and then a
spinal tap was eventually done.  That Came Back Positive for
Menangitis.  I was in the hosptial for a week, and the doctors NEVER
found out how i got it, though every test known to man was
performed.

It is Now 6 months later and my life is now being ruined by these
Awful Headaches.  They Are crippling me and i am un-able to function
when they occur.  I have had recent MRIs and Cat Scans as well as
Blood Work and many other tests and these headaches just keep
coming.  The worst USUALLY when i wake up in the morning.  I REALLY
need some help.  It is so hard to take care of my kids and these
headaches!!!!!  I hope i can learn some usefull ideas and such here
in this group.  I am currently on 50mg of Ultram and used to take it
once or twice a day...the doctor now suggests i take it up to 4 times
a day if i have to.  I WANT MY LIFE BACK!!

Geoffery

A friend of mine who lost her husband a year ago in a car wreck posted this on her page and I thought it would help people understand how a HBA loved one feels.

1. I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me.

2. I will not recover. This is not a cold or the flu. I'm not sick. I'm grieving and that's different. I will not always be grieving as intensely, but I will never forget my loved one and rather than recover, I want to incorporate his life and love into the rest of my life. That person is part of me and always will be, and sometimes I will remember him with joy and other times with a tear. Both are okay.

3. I don't have to accept the death. Yes, I have to understand that it has happened and it is real, but there are just some things in life that are not acceptable.

4. Please don't avoid me. You can't catch my grief. My world is painful, and when you are too afraid to call me or visit or say anything, you isolate me at a time when I most need to be cared about. If you don't know what to say, just come over, give me a hug or touch my arm, and gently say, "I'm sorry." You can even say, (and this is sooooo True) - "I just don't know what to say, but I care, and want you to know that."

5. Please don't say, "Call me if you need anything." I'll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas:

I. Bring food.

II. Offer to take my children to a movie or game so that I have some moments to myself.

III. Send me a card on special holidays, birthdays (mine, his or hers), or the anniversary of the death, and be sure and mention his name. You can't make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day.

IV. Ask me more than once to join you at a movie or lunch or dinner. I may say no at first or even for a while, but please don't give up on me because somewhere down the line, I may be ready, and if you've given up, then I really will be alone.

6. Try to understand that this is like I'm in a foreign country where I don't speak the language and have no map to tell me what to do. Even if there were a map, I'm not sure right now I could understand what it was saying. I'm lost and in a fog. I'm confused.

7. When you tell me what I should be doing, then I feel even more lost and alone. I feel bad enough that my loved one is dead, so please don't make it worse by telling me I'm not doing this right.

8. Please don't call to complain about your husband, your wife, or your children. Right now, I'd be delighted to have my loved one here no matter what they were doing. (You can call now, but I don't want to hear how your life is going)

9. Please don't tell me I can have other children or need to start dating again. I'm not ready. And maybe I don't want to. Besides, what makes you think people are replaceable? They aren't. Whoever comes after, will always be someone different.

10. I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, but it may not look the way you think it should. This will take time and I never will be my old self again. (I never will be either I was his wife now I am his widow.) So please, just love me as I am today, and know, that with your love and support, the joy will slowly return to my life. But I will never forget and there will always be times that I cry. Don’t tell me I will move on. I don’t see that and when you say it, it hurts very much.

Hi there,

I just started a new acupuncture treatment and after each session so
far (3 to date), I have had very strong reactions - causing an increase
in pain the day of and a hang-over swolen type headache the days after.
Has anyone else had this experience?

...Laura

Sherry,

In our thoughts and prayers.

Suzanne

-------------- Original message from Sherry Lynn <shernlucky@...>: --------------

Hey it is Sherry. I just wanted to ask for you to please keep me in your prayers. As you know I got out of the hospital a week ago and  today I went to the doctor for a follow up. He told me that my lungs were still full junk (rattly) and it's causing me to have alot of medical problems. Also my oxygen level is 86 normal is 95. He is going to keep a close eye on me. I still feel real bad. I am so tired of being sick. But hey I'M A SURVIVOR. So please keep me in your prayers. I go back to the doctor in 2 weeks so I keep you posted.

Thanks,

Sherry

   

For information on Meningitis Visit:   

   www.meningitis-angels.org

Join my meningitis awareness group:

http://health.groups.yahoo.com/group/somebunny4meningitisawareness/

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!
>

Hi there,

Since we have some new members, I thought I would post this article
(it's also in the Files section. It's the only article I've found
that specifically talks about treatemnt of postmeningitis headache.

Also, I've just uploaded a bunch of new links from my database that
may be of interest/help to you.

...Laura

Ask the Experts about Headache
from Medscape Neurology & Neurosurgery

http://www.medscape.com/viewarticle/413709


Treatment of Headache After Viral Meningitis?

Question
What is the recommended treatment for protracted intractable headache
following viral meningitis? CT scan and other tests show no
complicating factors.



Response from Randolph Warren Evans, MD
Clinical Associate Professor in the Department of Neurology at the
University of Texas at Houston Medical School and Clinical Associate
Professor in the Department of Family and Community Medicine at
Baylor College of Medicine.





First, I would want to confirm the diagnosis of acute viral
meningitis, even though it has resolved. Even with a normal CT scan,
an MRI scan of the brain can further exclude a parameningeal focus,
meningeal enhancement, low-grade neoplasm, or paranasal sinusitis
(such as ethmoid or sphenoid). A lumbar puncture will determine
whether the CSF has indeed returned to normal. I presume there is no
evidence of any other systemic disease such as HIV, Lyme,
sarcoidosis, cancer, or collagen vascular disease, or drug-induced
meningitis (eg, due to nonsteroidal anti-inflammatory drugs [NSAIDs],
antibiotics such as trimethoprim/sulfamethoxazole, carbamazepine, or
ranitidine).[1]
Neufeld and associates[2] provide an excellent description of the
natural history of "postmeningitis headache." They reported on 70
patients from 5-78 years of age with acute meningitis (viral in 53
and bacterial in 17) who were interviewed about 5 years after the
initial illness. After recovery from meningitis, 54% of those with
previous headache reported increased frequency of the headache, and
37% experienced new-onset postmeningitis headache. However, only 21%
of the new-onset headache group experienced the postmeningitis
headaches within the first year. Patients who developed
postmeningitis headache were significantly younger than those who did
not. Forty-six percent of patients with meningitis reported headaches
on follow-up compared with 26% of age- and sex-matched controls. New-
onset daily headache has also been associated with Epstein-Barr virus-
induced immune changes.[3]

Treatment of postmeningitis headache is the same as treatment of any
other chronic daily headache. Could medication rebound be
contributing to the headaches? If some of the headaches meet migraine
criteria, a triptan could be tried for symptomatic treatment. Other
symptomatic medications that might be of benefit include baclofen,
NSAIDs, and tizanidine. Preventive medications for chronic daily
headache could also be tried such as tricyclics, venlafaxine,
valproic acid, and topiramate. Nonmedication approaches that could be
tried include biofeedback, massage, and acupuncture. The patient
might also benefit from hospitalization for a few days for a trial of
intravenous DHE and/or valproate sodium.[4]



Posted 12/19/2000


----------------------------------------------------------------------
----------

References
Evans RW. Other secondary headaches and associated disorders. In:
Evans RW, Mathew NT, eds. Handbook of Headache. Philadelphia:
Lippincott-Williams & Wilkins; 2000:chap 13.
Neufeld MY, Treves TA, Chistik V, Korczyn AD. Postmeningitis
headache. Headache. 1999;39:132-134.
Vanast WJ, Diaz-Mitoma F, Tyrrell DL. Hypothesis: chronic benign
daily headache is an immune disorder with a viral trigger. Headache.
1987;27:138-142.
Mathew NT, Kailsaam J. Repetitive intravenous administration of
valproate sodium in intractable migraine: comparison with intravenous
dihydroergotamine (DHE). Neurology. 2000;54(suppl 3):A22.




Medscape Neurology & Neurosurgery 2(2), 2000. © 2000 Medscape

Enter your vote today!  A new poll has been created for the
PostmeningitisHeadache group:

What has been the most effective alternative treatment for your headaches?

   o Acupuncture
   o Massage
   o Zone Therapy
   o Chiropractor
   o Yoga


To vote, please visit the following web page:
http://groups.yahoo.com/group/PostmeningitisHeadache/surveys?id=1985152

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

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!
>

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!

Happy New Year Laura and everyone else too!

On a happy note - my son, Sam, who was deafened from meningitis 7 years ago - has gotten his photo in the Cochlear Corporation Annual Report.  This is a company that makes the miracle of hearing available to him now:)  Hopefully a similar thing for the headaches will come eventually, we live in a wonderful time.

You can see him at the following link:  http://www.cochlear.com/Corp/Investor/AnnualReport2007/ed02_binaural_a.htm

Regards,

Suzanne in CT

mom to Sam, 8yo

-------------- Original message from "cph72" <lbstadler@...>: --------------


> Hello fellow members,
>
> I would like to wish everyone a happy new year and send a wish of
> hope that we all have a higher number of good/better days this year,
> lower pain levels, higher pain thresholds and more enjoyment out of
> life!
>
> Personally, I am determined to become a better manager of my pain and
> to not feel guilty for resting in the middle of the day (every day)
> or for getting a treatment when I need it or for not working a full-
> time job like I used to (as I have done in the past!).
>
> I have vowed to myself for 2008 that I will be more patient with my
> crazy head, accept it the best I can and live life to its fullest
> despite it being in a more limited fashion! I r ealize that I do have
> some limitations but I refuse to let them take over my life and watch
> another year fly by while I fight against it! I will also continue to
> *work* on finding a medicaiton and/or treatment that helps and to
> gain a better balance in everything I do.
>
> Maybe you can submit your promises or headache "resolutions"> It
> would be great to hear how you plan to better manage your headaches,
> improve how you cope, what treatments you plan to try or what new
> perspectives or attitudes you plan to adopt for the coming year.
>
> On a final note I would like to submit that in the short time this
> group has been around, I personally have found it to be very helpful.
> It really has provided me with a powerful source of support. For
> that, I thank you all for your participation and kind words of
> encouragement.
>
> All the best to you for t he coming year.
>
> Kind regards,
> Laura
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
> <*> To visit your group on the web, go to:
> http://groups.yahoo.com/group/PostmeningitisHeadache/
>
> <*> Your email settings:
> Individual Email | Traditional
>
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> http://groups.yahoo.com/group/PostmeningitisHeadache/join
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>
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> mailto:PostmeningitisHeadache-fullfeatured@yahoogroups.com
>
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> PostmeningitisHeadache-unsubscribe@yahoogroups.com
>
> <*> Your use of Yahoo! Groups is subject to:
> http://docs.yahoo.com/info/terms/
>

Hi Laura and others,

   Thank you for the uplifting words about 2008. I also have made a
promise to try to deal better with my headaches and sleepless nights.
I am an "up" person and often tell people that my problems are all in
my head. That is pretty much true, but reality is not as funny as it
sounds.
   My biggest problem is with balance and that has me in a wheelchair
most of the time. I wish it were different, but falling is not so
great! I am not real tall, but the ground seems a long ways down when
you fall! I have also had to give up my job as a librarian, and as a
piano teacher. My short term memory loss makes it difficult to stop a
student to tell them what mistake they made, and then forget what it
was! I was also a church organist, but that too is done.
   I keep busy doing slide shows for people and that helps time go by.
When I get a headache, it feels as if the top of my head is going to
blow off. My pain is usually there. The doctors have no answers for
me, either. It is very frustrating! I have never had headaches like
these. Often I wake up in the night with one, or if I get tired. I
must learn to say "no" and to keep within my limits. Naps are allowed!
   This group has helped me feel less isolated. Sometimes I felt like
a "freak", since I did not know any other survivors of meningitis. I
live near Grand Rapids, MI, and there are fine doctors who care, but
don't have answers.
   I now have a recumbant bike, so I am beginning to ride it to get
more excercise. Hopefully it will help me keep strength and make me
feel better too!
   God is good, and I have many blessings. My wish is the grace to
continue life with a smile and happy words!

Eileen

--- In PostmeningitisHeadache@yahoogroups.com, "cph72"
<lbstadler@...> wrote:
>
> Hello fellow members,
>
> I would like to wish everyone a happy new year and send a wish of
> hope that we all have a higher number of good/better days this
year,
> lower pain levels, higher pain thresholds and more enjoyment out of
> life!
>
> Personally, I am determined to become a better manager of my pain
and
> to not feel guilty for resting in the middle of the day (every day)
> or for getting a treatment when I need it or for not working a full-
> time job like I used to (as I have done in the past!).
>
> I have vowed to myself for 2008 that I will be more patient with my
> crazy head, accept it the best I can and live life to its fullest
> despite it being in a more limited fashion! I realize that I do
have
> some limitations but I refuse to let them take over my life and
watch
> another year fly by while I fight against it! I will also continue
to
> *work* on finding a medicaiton and/or treatment that helps and to
> gain a better balance in everything I do.
>
> Maybe you can submit your promises or headache "resolutions"> It
> would be great to hear how you plan to better manage your
headaches,
> improve how you cope, what treatments you plan to try or what new
> perspectives or attitudes you plan to adopt for the coming year.
>
> On a final note I would like to submit that in the short time this
> group has been around, I personally have found it to be very
helpful.
> It really has provided me with a powerful source of support. For
> that, I thank you all for your participation and kind words of
> encouragement.
>
> All the best to you for the coming year.
>
> Kind regards,
> Laura
>

Hello fellow members,

I would like to wish everyone a happy new year and send a wish of
hope that we all have a higher number of good/better days this year,
lower pain levels, higher pain thresholds and more enjoyment out of
life!

Personally, I am determined to become a better manager of my pain and
to not feel guilty for resting in the middle of the day (every day)
or for getting a treatment when I need it or for not working a full-
time job like I used to (as I have done in the past!).

I have vowed to myself for 2008 that I will be more patient with my
crazy head, accept it the best I can and live life to its fullest
despite it being in a more limited fashion! I realize that I do have
some limitations but I refuse to let them take over my life and watch
another year fly by while I fight against it! I will also continue to
*work* on finding a medicaiton and/or treatment that helps and to
gain a better balance in everything I do.

Maybe you can submit your promises or headache "resolutions"> It
would be great to hear how you plan to better manage your headaches,
improve how you cope, what treatments you plan to try or what new
perspectives or attitudes you plan to adopt for the coming year.

On a final note I would like to submit that in the short time this
group has been around, I personally have found it to be very helpful.
It really has provided me with a powerful source of support. For
that, I thank you all for your participation and kind words of
encouragement.

All the best to you for the coming year.

Kind regards,
Laura

HEY I JUST STARTED A NEW MENINGITIS AWARENESS GROUP WITH MY FRIEND MICHELLE CLARK, WHO LOST HER SON TO MENINGITIS BACK IN 2000. PLEASE ADD US AND HELP US MAKE PEOPLE AWARE OF MENINGITIS.
THANKS,
SHERRY

My URL: myspace.com/aware4meningitis

   

Sherry,

You are in our thoughts and prayers.  I hope that relief for your headaches returns soon.  My son recently started swimming and that seems to help him somewhat with his headaches.  I hope you have something similar that works for you.

Regards,

Suzanne in CT

mom to Sam, 8yo

meningitis @11m 07/00

deaf from meningitis, hearing with cochlear implants since 09/00

-------------- Original message from Sherry Lynn <shernlucky@...>: --------------

I just wanted to ask for prayer for me because my headaches are back full force and its so bad my right eye won't open. Please pray my headache will go away. It's been awhile since I've had my headache. They are no fun,

thanks,

EBA Sherry

   

For information on Meningitis Visit:

      www.meningitis-angels.org

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
>

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

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

Martha Sheffield has sent you the following story:

Posted on Tuesday, Nov. 27, 2007

Survivor helps others cope with meningitis

By JAN JARVIS

Sherry Lopez knew something was wrong. But at the emergency room, doctors told the 26-year-old hairstylist that it was only the flu.

Five days later, Lopez could barely walk, stand, swallow or tolerate light and noise.

"It got so bad I was scared to go to sleep," Lopez said. "I was afraid I was dying."

Read More...

Hi,

I'd like to introduce myself, just signed on...

My son had bacterial meningitis @11m back in June of 2005.  After a 12 day stay in the hospital he was discharged and diagnosed with profound hearing loss and mild vestibular issues (can't close his eyes and stand on one foot).  Fast forward to 2007 - he is now bilaterally implanted with a Cochlear brand N24C and N24 double array cochlear implant with freedom processors and is totally mainstreamed in school.  The second implant was 5 years after the first as bilateral was not insurance approved till then, plus the second ear had a high level of ossification.

As to why I've joined your group - he also suffers from extreme headaches several times per month.  No one has previously lent any insight as to the cause and when I stumbled onto your group, I now realize it is most likely meningitis related.  He too gets massive headaches by the end of the day that culminate in light sensitivity, loss of apetite and vomiting.  Next morning, he's just fine.

What I wanted to add on to the post I'm replying to is that recently he took up swimming on a swim team.  He swims 6 days a week and he loves it.  One thing I hadn't noticed however, until you mentioned it, is that his headaches seem to be a little bit less often since he started swimming so much.  I don't know if it is the swimming or that he is not now participating in electronics (TV, game boy, computer) as much.  Either way, I'm happy that it seems to be having some possitive effect.

I look forward to learning from all of you who have been there too:)

Regards,

Suzanne in CT

mom to Sam, 8yo

meningitis @11m 06/00

N24C 09/00 Left

N24 double array 06/05 Right

-------------- Original message from "cph72" <lbstadler@...>: --------------


> Hello all - felt like giving everyone an update on my situation in
> hopes that you may be able to relate or have any insight...
>
> I went to a private neurologist last week (a Harvard grad), who did
> the normal neuro exam and listened to my story and asked lots of
> questions. Her view was that my other docs have not done anything to
> really find out what the problem was to figure out my problem.
>
> She suggested I have an EEG, which my other headache dr. said would
> not show anything...and after we discussed it, we agreed that I would
> try a new med called Lamictal first, another anit-seizure medication.
> I was perscribed 25mg twice a day that I take at breakfast and at
> dinner time and if this me dication doesn't help, then I will have the
> EEG - even though it will cost me $400 out of my own pocket.
>
> I wonder if anyone with chronic postmeningitis headache has had an
> EEG and if they were able to see anything on the results...to shed
> any light?
>
> I have been on the Lamictal since Friday night and it does seem to
> calm the pain in my head, however it is giving me a secondary kind of
> headache (kind of sick, achy head feeling)...and is overall making me
> feel relaxed (good side-effect), but also nauseous, out of it,
> sleepy, a bit anxious and woozy. I will give it some time to see if
> the side-effects get better and if it does continue to curb the pain.
> Fingers crossed!
>
> The neuro also said the same thing as the pain dr. that Botox would
> not help me because what I have is a CNS problem and Botox is only
> for tension headaches. I still wo n't rule this out, but have to
> somehow trust that two drs. have told me the same thing so there
> might be something to it.
>
> The other thing the dr. said was that swimming is a good exercise to
> try and said that for some people with brain injuries that swimming
> seems to help. She said that it has to do with the equilibrium
> effect.
>
> That's all for now. Feel free to chime in if you have any feedback.
> It's would be interesting to know if anyone else has tried this
> medication and if they'd had success with it. Also, has anyone found
> a medication that does help with minimal side-effects?
>
> Until next time...the quest continues.
>
> Hope this finds you having a good day today.
>
> Warmest regards,
> Laura
>
>
>
>
> Yahoo! Groups Links
>
> <*> To visit your group on the web, go to:
> http://groups.yahoo.com/group/PostmeningitisHeadache/
>
> <*> Your email settings:
> Individual Email | Traditional
>
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> http://groups.yahoo.com/group/PostmeningitisHeadache/join
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>
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>
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> PostmeningitisHeadache-unsubscribe@yahoogroups.com
>
> <*> Your use of Yahoo! Groups is subject to:
> http://docs.yahoo.com/info/terms/
>

Hi Laura,
   I am glad that you have found a Dr. that will listen and start to
try a few things. I had an EEG about 6 months ago. It showed that I
was not having seizures. My headaches are frequent and severe -- but
not all the time as yours are. I was almost hoping I was having
seizures, just so that then they could do something. I can not even
imagine how it must feel to have this all the time!
   When I do get a headache, it feels as if the top of my head is
going to blow off. My Dr. has done a few simple tests in his office,
and they are not sure what causes my headaches either. He gives me
Vicadin (sp?), which makes me tired, dopey, and lazy, but I can
usually fall asleep and awake with a head that at least I can live
with!
   However, Laura, the longer time goes on after meningitis, I know
that it is a horrid, horrid disease, and that the side effects are
numerous and the medical experts are trying to learn along with, or
from, us. My life has changed so much in the last 2 1/2 years that at
times I do not recognize myself.
   As I am sure you do, I try to take one day at a time, and try to
keep as busy as I can tolerate. You remain in my thoughts and prayers.

Eileen


--- In PostmeningitisHeadache@yahoogroups.com, "cph72"
<lbstadler@...> wrote:
>
> Hello all - felt like giving everyone an update on my situation in
> hopes that you may be able to relate or have any insight...
>
> I went to a private neurologist last week (a Harvard grad), who did
> the normal neuro exam and listened to my story and asked lots of
> questions. Her view was that my other docs have not done anything
to
> really find out what the problem was to figure out my problem.
>
> She suggested I have an EEG, which my other headache dr. said would
> not show anything...and after we discussed it, we agreed that I
would
> try a new med called Lamictal first, another anit-seizure
medication.
> I was perscribed 25mg twice a day that I take at breakfast and at
> dinner time and if this medication doesn't help, then I will have
the
> EEG - even though it will cost me $400 out of my own pocket.
>
> I wonder if anyone with chronic postmeningitis headache has had an
> EEG and if they were able to see anything on the results...to shed
> any light? .......
>
> > Warmest regards,
> Laura
>

Hello all - felt like giving everyone an update on my situation in
hopes that you may be able to relate or have any insight...

I went to a private neurologist last week (a Harvard grad), who did
the normal neuro exam and listened to my story and asked lots of
questions. Her view was that my other docs have not done anything to
really find out what the problem was to figure out my problem.

She suggested I have an EEG, which my other headache dr. said would
not show anything...and after we discussed it, we agreed that I would
try a new med called Lamictal first, another anit-seizure medication.
I was perscribed 25mg twice a day that I take at breakfast and at
dinner time and if this medication doesn't help, then I will have the
EEG - even though it will cost me $400 out of my own pocket.

I wonder if anyone with chronic postmeningitis headache has had an
EEG and if they were able to see anything on the results...to shed
any light?

I have been on the Lamictal since Friday night and it does seem to
calm the pain in my head, however it is giving me a secondary kind of
headache (kind of sick, achy head feeling)...and is overall making me
feel relaxed (good side-effect), but also nauseous, out of it,
sleepy, a bit anxious and woozy. I will give it some time to see if
the side-effects get better and if it does continue to curb the pain.
Fingers crossed!

The neuro also said the same thing as the pain dr. that Botox would
not help me because what I have is a CNS problem and Botox is only
for tension headaches. I still won't rule this out, but have to
somehow trust that two drs. have told me the same thing so there
might be something to it.

The other thing the dr. said was that swimming is a good exercise to
try and said that for some people with brain injuries that swimming
seems to help. She said that it has to do with the equilibrium
effect.

That's all for now. Feel free to chime in if you have any feedback.
It's would be interesting to know if anyone else has tried this
medication and if they'd had success with it. Also, has anyone found
a medication that does help with minimal side-effects?

Until next time...the quest continues.

Hope this finds you having a good day today.

Warmest regards,
Laura

Laura,

Your Doctor is most likely wrong.  (I love it - an anesthesiologist who thinks
he's a headache specialist!)

Our Daughter had a severe constant daily headache caused by W.N. Encephalitis. 
The Drs can't explain what it does to the brain to cause the headache, much less
come up with an effective treatement, but guess what?

Botox has helped her tremendoulsly.  The first time it was just a little bit, 
The second treatment was really effective, and the she just got her third
treatment a month ago.  It is the ONLY thing that has helped so far, other than
having to take really strong narcotics.

So, don't give up. The data indicates that over 60% of people with headaches get
relief.  Guaranteed? No, but it just might work.

And if it doesn't something else will.  Don't give up.  Ever.  This too will
pass.  We will include you in our prayers.

Blessings,

Andrew Sleight



________________________________

From: PostmeningitisHeadache@yahoogroups.com on behalf of Eileen Scott
Sent: Fri 11/9/2007 6:06 PM
To: PostmeningitisHeadache@yahoogroups.com
Subject: Re: [PostmeningitisHeadache] Accucupuncture: "odds are poor"



Hi Laura,

     My heart goes out to you. I get frequent headaches, but they are not
constant. How long ago did you have meningitis? My headaches feel as if the top
of my head is going to blow off, and I am thankful they are not constant.
Besides the headaches, my worst problems are balance problems and memory loss
along with fatigue that gets awful. My doctors are great, but when I ask how
many patients like me they have ever seen, they usually answer "none". During my
scans related to the BM, they discovered that I have a brain tumor on my
pituitary gland. It is nonmalignant, and they are shrinking it with meds. The
specialist I see for that seemed very interested in my case and is VERY
intelligent. He is wonderful and my husband and I asked him more and more
questions about the meningitis after effects. He trained at Mayo, but I am only
the 2nd adult survivor he has ever seen, so he said that I am more of an
"expert" than he is.
    I see an eye specialist (I almost lost my eye from hemorrhaging during my
illness), and ear specialist for my hearing loss, my internist, and a
neurologist. Their statements have always been, "It is amazing you are alive!!".
I am very thankful for that, but that does not make my day to day problems much
easier to deal with. I understand your frustrations! I feel the same way. I seem
to be the "old" survivor at 59 years old. God has brought me through rough
waters, and I trust in Him, but the tiredness does not always make me so willing
to accept the way I am now. I don't think the doctors mean to ignore our
problems, it is just that there are no "Meningitis Specialists" out there!
    Well, this has not been helpful to you I am sure, but I do understand. My
life is so changed, as I am sure yours is too. Please don't "give up"!

Keeping you in my prayers,
Eileen


On Nov 9, 2007 10:22 AM, cph72 <lbstadler@...
<mailto:lbstadler@...> > wrote:


	 I went to the anesthesiologist today and he said that basically he is
	 not optomistic about my condition (post-meningitis headache) and
	 being able to help me -- he said that "the odds are against me" for
	 accupuncture or anything else working for the pain. I find that hard
	 to believe since there are cagillions of pain killers out there!!!!!

	 He also said Botox would not work since it is a treatment used for
	 trigger points and since mine is related to a CNS infection it
	 wouldn't do anything for my pain. This was something that I have
	 already been thinking and he basically confirmed it. He pointed me
	 back to my dr. (who is "world renowned") but the problem is I don't
	 get the feeling he's using his ability to do all he can...maybe he is
	 and I just do see it.

	 The bottom line is that the dr.s are telling me they are "giving up
	 on me" that "nothing will work" and that "the only hope is keep
	 trying meds to see IF something works" -- somehow I just can't accept
	 this.

	 There MUST be something they can do to help me with the ongoing daily
	 constant pain.

	 Any insight you have would be appreciated.

	 ...Laura

I went to the anesthesiologist today and he said that basically he is
not optomistic about my condition (post-meningitis headache) and
being able to help me -- he said that "the odds are against me" for
accupuncture or anything else working for the pain. I find that hard
to believe since there are cagillions of pain killers out there!!!!!

He also said Botox would not work since it is a treatment used for
trigger points and since mine is related to a CNS infection it
wouldn't do anything for my pain. This was something that I have
already been thinking and he basically confirmed it. He pointed me
back to my dr. (who is "world renowned") but the problem is I don't
get the feeling he's using his ability to do all he can...maybe he is
and I just do see it.

The bottom line is that the dr.s are telling me they are "giving up
on me" that "nothing will work" and that "the only hope is keep
trying meds to see IF something works" -- somehow I just can't accept
this.

There MUST be something they can do to help me with the ongoing daily
constant pain.

Any insight you have would be appreciated.

...Laura

Hi there,

I went to my regular dr. today to get my disability papers filled out
and was shocked when she suggested that I try an accupuncturist that
she would recommend that would be covered by my medical insurance. I
suppose since she realized that I have now tried so many medicaitons,
a physical therapist, etc. that they would throw me a bone.

After 3.5 years of shelling out thosands of dollars on alternative
treatments, the dr. is NOW offering something to me that's not in a
prescrpition form? I can't beleive it. And it was after I told her
that I just went to a new accupuncture person the day before and was
given herbs and tea to drink daily.

Anyway, I am now somewhat comforted by the fact that this
accupuncturist is a dr. and is an anesthesiologist so I'm hoping he
can do something for me.

I also have an apt. with a private neurologist in two weeks and will
explore trying Botox.

I'm hoping I'll be able to get some relief soon.

Just wanted to vent.

...Laura

 God is BIGGER than the Boogie Man

My MySpace URL: myspace.com/ward_babe

Proud supporter of

Meningitis Angels

Play it Safe... Vaccinate

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