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Glad you found the group. Sorry to hear about your suffering. I understand where you are coming from and your frustration. First, I will point you to the files section of the group where I have uploaded lots of documents concerning "postmeningitis headache". I have also uploaded a number of web links that may be helpful.
Unfortunately there is not very much research and essentially the findings indicate that it is an unknown condition and that treatment is the same as treatment for other headache problems like chronic daily headache or migraine. I have inserted the one single piece of research on treatment of postmeningitis headache below.
Personally, I contracted a "rip roaring" case of viral meningitis in June 2004...Since then, I have been seen by five neurologists and have tried six different kinds of meds (Diamox, Neuronten, Propanol, Elavil, Topimax, Lamictal and now Lyrica).
The problem is that for me these medicaitons made my headache worse - except Lyrica, which I am taking now. It is the most tolerable so far.
The key is to find a treatment that works and you have to experiment to find the right one and have patience. If you have chronic daily headaches or pain more than a couple days a week, it's advisable to take a prophylactic otherwise you will run into the problem or potential for rebound headache and medication overuse. My suggestion is to try Lyrica first if you consider going down this path. Others have indicated the botox works, however I have been told by 3 different neurologists that it will not help because it is for tension headaches and this is a central nervous system problem.
I have also just entered into a pain management program and am working with a team of a psychologist, dr. (anesteologist) and a physical therapist. My psychologist has recommended the book: "The Pain Survival Guide: How to Reclaim Your Life" - http://www.amazon.com/Pain-Survival-Guide-Reclaim-Lifetools/dp/1591470498
I just got it yesterday and I can already tell you it's a must read for anyone with chronic pain. I highly recommend it. I wish I would have had this book 3 years ago!
What I can also tell you is to give yourself a break. You had a very serious illness. The more seriously you take this now and take steps to deal with it, the better. I personally ignored it and kept working and living life "as usual" in spite of the pain and just in the last 2 years I have stopped everything to find out what/how I can get better and manage this monster.
One thing I can tell you that my doc. told me is that because of the illness, my central nervous system is "sensitized" and the pain threshold is lowered. Fatigue is very common as a result as well. I have since learned the hard way that I MUST REST every day. I take 30 minutes to 1 hour every afternoon to relax and listen to a healing meditation session on my headphones and it gives me more energy and does help with the pain a lot.
I will end this now, but please let me know if you have any quesitons.
Best of luck as you find your way.
Warmest regards,
Laura
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]
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
1. Evans RW. Other secondary headaches and associated disorders. In: Evans RW, Mathew NT, eds. Handbook of Headache.
2. Neufeld MY,
3. 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.
4. Mathew NT, Kailsaam J. Repetitive intravenous administration of valproate sodium in intractable migraine: comparison with intravenous dihydroergotamine (DHE). Neurology. 2000;54(suppl 3):A22.
To: PostmeningitisHeadache@yahoogroups.com
From: geonat1978@...
Date: Fri, 7 Mar 2008 03:25:26 +0000
Subject: [PostmeningitisHeadache] OMG!
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
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