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, stroke, seizures or even death.

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Postmeningitis Headache

Hi,

I have just formed a new group for those suffering from post-meningitis
headaches. I personally have this condition and have not found anything
specific for it, so I decided to dedicate a new group for it. If you
have chronic headaches associated with meningitis, please feel free to
check out this group for resources, info, and support:

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

Best regards,
Laura

Replies

deleted_user
deleted_user

I, too, am having crippling post-viral meningitis headaches. I have tried everything to alleviate/prevent them to no avail. I would appreciate any advice, websites, etc that you have to offer.
deleted_user
deleted_user

Hi! I had viral meningitis twice (I hope I never get it again) and I have had horrible, debilitating migraines ever since. The migraines go all the way through my brain and down my spine, and it will hurt to move. Meningitis sucks! It triggered a latent autoimmune disorder, so I have been a complete mess after meningitis. I feel your pain, and hope all of us get better!
deleted_user
deleted_user

Sorry to hear about bouts and onoing problems. I just started on a trial with Lyrica. Not sure what you've tried. Hang in there and know you are not alone in this battle. Yes, it does SUCK but life must go on!
deleted_user
deleted_user

I'm having headaches, but not migraines, mostly maybe a 4-6 on the pain scale located in the middle of my forehead. I think reading and computer use aren't helping on the other hand I have to make a living.

Do all of you have migraines?
I had meningitis caused by mycoplasma, which normally causes walking pneumonia.
deleted_user
deleted_user

had bactieral type b a long time ago and still get headaches often said i could drill a hole in my head. I didnt know you could get treatment but the NHS here in England lost my notes years ago. Sorry i have no helpful advice but i do sympathise and it doe's get a bit easier to live with in time good luck.
deleted_user
deleted_user

Hello, all. My wife was diagnosed with viral meningitis about 3 weeks
ago. Since then, she has had 2 very severe headaches, each occurring
about 7 days apart. The first occurred about 10 days after she was
released from the hospital where she was treated for the meningitis.
We went back to the ER and they just gave her a steroid taper and some
pain meds. The second about 7 days after that. The headaches
accompanied with vomiting.

I feel helpless in not knowing what to do. After some research on the
web I realized that post-meningitis headaches are not that uncommon.
Any feedback will be much appreciated. Thank you.
deleted_user
deleted_user

I seriously thought I was going crazy. I am so happy to know it's not just me but this is happening to more people. I have no idea why or how I got the meningitis in the first place but after 8 days in isolation and ICU, I have headaches all the time. The doc said they might last a couple of weeks or so but I'm almost 2 months out from the hospital stay and I still have problems. One thing the neurologist said to try was lots of caffeine. That seems to help sometimes. I'm so glad this is not just me.
deleted_user
deleted_user

Hi there, I'm not sure if you all saw my original message, but I started another group on Yahoo that has loads of info re:treatments, medications, research, etc. Please go to:
http://health.groups.yahoo.com/group/PostmeningitisHeadache/

Best regards,
Laura
deleted_user
deleted_user

I was rushed into hospital on 23 August where I was diagnosed with viral meningitis. Prior to that I'd had a tooth abscess and coldsore - not sure if either of those are linked to it. I stayed in hospital for 5 days and was eventually discharged. I have been given no prescribed drugs since leaving hospital but told to rest. Currently signed off work until 3 October. When I first came out of hospital, I was tired and had double vision, lack of co-ordination etc. but no headache. However, for the last 2 weeks I've had a permanent headache. I wouldn't class it as a migraine or chronic, it's actually quite mild, but it's there all the time. Definitely worsened by computer use or watching TV. The pain centres around my right eye and I find that wearing a patch over that eye helps. I am hopeful that it will eventually go but worry that I may be left with a permanent headache. I will keep you posted of any further advice I receive from the doc or progress I make.
deleted_user
deleted_user

While I applude your action using yahoo you need to moderate your group to keep the junkies out those are the ones posting ads in your board
deleted_user
deleted_user

I had the viral form of meningitis 3 weeks ago and have been suffering with a headche, back ache(im thinking due to a spinal tap)and nausea. My appetite has definitly been affected too. My headaches wont go away! Im only able to eat a couple of bites and then get sick..... Sometimes i get afraid because it feels like my symptoms get better at times but then seem to worsen, and i might get meningitis again. is ANYONE ELSE HAVING THE SAME PROBLEM? THANKS
deleted_user
deleted_user

Epin....YES! I am having those problems too! I had chemical/viral meningitis in April, was hospitalized for 8 days then sent home. However, I have had a constant headache since I left the hospital (didn't notice how bad it was when I was there because I was being pumped full of painkillers). I will have an OK day, then that night it turns into unbearable pain! I am actually going to go to a headache clinic to see if I can get any relief. I teach third grade, and I can't keep teaching with this horrible headache! UGH! Hope you are feeling better soon!
deleted_user
deleted_user

I was hospitalized 3 weeks ago with meningtis..spent 5 days in there. My headaches got so much worse while there..the dr's thought I was having a spinal leak from the lumbar puncture..so they took me in and did a blood patch..well, 2 weeks later..I STILL have a headache..only time it goes away is when I take the painmeds..I went for my follow up this past Tues with my dr..he seemed to think that the first blood patch didn't take..so off I went yesterday to the hospital for another blood patch. I was feeling great when I went to bed last night..but yet again this am I have another awful headache. I am literally in tears. I have dealt with this headahce for almost 5 weeks now..I honestly thought that the spinal blood patch I had done yesterday was going to be the answer..I don't know what else to do..? These headaches are effecting my everyday life with my kids and husband. Any suggestions would be soooo much appreciated. I have NEVER went this anything like this before and I just dont know what else I am suppose to do!
deleted_user
deleted_user

I was hospitalised back in april for 8days with Viral Meningitis which i got from mumps. they also think i may have got it from an insect bite while on holidays. i was treated for both viral and bacterial meningitis. they said becasue i had taking antibiotics for mumps it would affect the results of the tests carried out which would confirm exactly what type i had. after numberous tests xrays scans and two lumber punchers i was finally allowed home! they said it was one of the worst cases they had seen of viral meningitis. nealy 5 months later and im still suffering with bad headches. went back to the doctor and a&e and was told i have post meningitis headache and there was nothing they could do. painkillers dont ease the pain i get. i get pain around my eyes my cheeks up the back of my head and feel absolutely crap. i find people dont realise how this can affect your everyday life. thank god i have a very supportive boyfriend but ive had to stop playing sport which was extremely difficult as i am very active and have been reduced to walking a few times a week. Doctor said i could suffer for up to a year with post meningitis headaches and may suffer with headaches for the rest of my life!! im going to see a neurologist in the next couple of weeks and hopefully he will have some answers for me, or at least advise me in what i can and cant do. i find it really difficult to concentrate in work and my work is been effected but am afraid that my colleagues and boss think im using the headaches as an excuse becasue some days im on top of the world then next i am in bits with them and i dont think they realise how this affects people. i didnt realise it at the beginning i taught after week out of hospital i would be fine! i will post an update when i see my neurologist to let people know what he has advised.

elda!
deleted_user
deleted_user

I have been suffering from severe headaches now for almost 9 months after spending over 5 weeks in the hospital with viral meningitis. The only thing that gives me any relief is if I take a vicodin when I first feel it coming on. If I wait until it's full force, absolutely nothing helps. My meningitis was misdiagnosed and I experienced numerous complications, including encephalopathy and neuropathy. Also, my heart stopped beating and I had to be resuscitated and placed on a ventilator for several days. Depending on which doctor I talk to, the headaches might last a few more weeks OR a few more months OR they may last for the rest of my life. I know how much all of you hurt and how debilitating these headaches can be. My life is temporarily on hold as I can't drive, I can't work, I can't watch much television....I just can't do much of anything right now. But one thing is for sure. I will never let this condition beat me!