Meningitis Support Group

Meningitis is inflammation of the membranes (meninges) covering the brain and the spinal cord. Although the most common causes are infection (bacterial, viral, fungal or parasitic), chemical agents and even tumor cells may cause meningitis. Meningitis can produce a wide range of symptoms including fever, headache or confusion and in extreme cases, deafness, brain damage,...

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Infectious Diseases
/ Meningitis Support Group

Recurrent Viral Meningitis

deleted_user
deleted_user
Hi all -

I have Mollaret Syndrome, which is a recurrent viral meningities. I've had 3 episodes in 6 years. There's not a lot of information out there about this subject. Does anyone know more about it? Know of a specialist who deals specifically with this?

Every time it happens, I wind up in the hospital for at least a week. It is EXTREMELY painful and debilitating. The worst part is that it could happen again at any time. It could be weeks... months... years... or (hopefully) never. I want to do everything in my power to make sure it never happens again, but it seems like my options are limited.

I tried prophalactic Valtrex, but that started affecting my liver so I had to discontinue daily doses. I'm now on an IV of acyclovir at home and will be disconnected this Friday, after more than 2 weeks of treatment.

Any one else out there share this experience? Know of new treatments? Anything?
deleted_user
deleted_user
I am so sorry to hear this! And somewhat terrified-
I hope you are doing well now and recover completely.
deleted_user
deleted_user
Wow! I had never heard of this syndrome before. Do you get cold sores? My BF has cold sores, but I never got them, but do get viral meningitis more often than is expected. I don't think the doctors ever did a PCR on my CSF. Do you get this every year? Are there any other symptoms to watch for?
deleted_user
deleted_user
Hi, new to this, but I was wondering what has come of your treatments? I share your pain in this since I was 7years old to this day at age 28. would like to swap stories & hopefully help eachother in the process. thanks
deleted_user
deleted_user
Hi I also have Mollaret Syndrome. I have had Meningitis over 20 times. It started when I was 18 and now I am 42. When the attack hits I start right on my acyclovir and also take imitrex. I have never met anyone with the same problem as me. I wouldn't wish this upon anyone.I've had it twice this year already! It seems to come out when I'm rundown. Does this happen to you? By the way, Imitrex really doesn't work. Do you take anything for pain?
deleted_user
deleted_user
I also suffer from Mollaret's Meninigits. I have had it for 24+ years. I have developed a website for more information. Please join me at mollaretsmeningitus.ning.com. There is some helpful information from others who have this horrable syndrome.
deleted_user
deleted_user
Oh hon i'm so sorry! I just got my PICC line out a few days ago after my 3rd and worst fight also. I think we've both received the most recent (possible) treatment since anti-virals are fairly new to the medical realm. My first two bouts (98 and 06) i was sent home after the worst of the symptoms were treated because there was nothing further to be done...this time i was in for 9 days and on the picc line for over a week more. Are your doctors even giving you 50-50 odds that it'll never come back? I'm still scared...
deleted_user
deleted_user
I am just getting over my sixth case of viral meningitis in 20 years. Didn't have the luxury of going to the hospital this time because I don't have good health insurance. Last time I had to to go to the hospital for one night with absolutely no health insurance and they billed me $15,000 (no error in the zeroes there!). Wish there was a way to eradicate this from my body permanently as my health and pocketbook can't afford it.
deleted_user
deleted_user
wow. I have had meningitis three times in ten years and have never heard of Mollaret Syndrome. This last bout was determined to be viral and life long valtrex treatment has been bandied about, but not sure?
This is great information! Thanks so much
deleted_user
deleted_user
Hey there,
I am just wanting to know if you or anyone else feels in retrospect that they may have had mild or milder bouts of meningitis in between the severe obvious bouts???
I know it seems a strange question but I' m starting to believe this is what happens to me!
I have all the same symptoms but much much less severe & only lasting a few days to a week!
I have only had 2 severe bouts of viral meningitis which required hospilisation for 8 days & the 2nd 11 days!
Any comments would be appreciated!
I wish you good luck with your battle!
Kind regards,
Rayna
deleted_user
deleted_user
Rayna,
I was given the diagnoses for Mollaret Syndrome after I posted the previous message. I believe that I have had less severe episodes over the course of my lifetime as well...
deleted_user
deleted_user
My daughter is 17 and was hospitalized about 5 weeks ago for viral meningitis. I was researching is this could be recurrent when I found your blog. She woke up Thursday morning with a bad "crick" in her neck. Chiropractor that afternoon and Friday. Saturday her neck pain is worse even on lortab and headache has been severe, mo relief with maxalt. This evening she became very light sensitive and nauseas. I think we are looking at meningitis again?? Any of you agree or disagree??

So frustrated, any advice would be appreciated!!!
deleted_user
deleted_user
Did you go to the doctor and find out what was wrong? I hope your daughter is okay. My advice only to get tested ASAP at your doctors or emergency care.
( I had Bacterial Meningitis)
tendonshurt
tendonshurt
I had no idea that so many suffer with this. I've had it twice 1988 and then again 2009. I think I have had symptoms that didn't last but a few days. I guess that's mini meningitis bouts. The 1st time I was quarantined but not the 2nd time. The infectious disease doctor said that I have herpes in my spine. He said I'll get it again.I've never had a cold sore or genital herpes. I'm going to check out the blog maybe I can learn some new info. Thanks for sharing.
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