VM 3 times

I've had VM 3 times. The first was when I was 18 (1983) shortly after a car accident & it was intense but resolved after about one week. The second time was in 2011, was a milder case but lasted a bit longer - around 10 days. This time has been worse. I was hospitalized twice after battling it for a week at home 5 weeks ago. I'm getting better daily but am experiencing tinnitus, photophobia, the dreaded headaches, feet tingling, temperature sensitivity, occasional mild nausea, sensitivity to loud noises, and lots of weakness. There seems to be no rhyme or reason to how my day will go. Some days I have good mornings, some days bad mornings & good afternoons, sometimes I wake up in the middle of the night with a splitting headache; I just never know what to expect. This forum has been very helpful. I'm now off narcotics for the pain relief but am taking Tylenol. The docs here in the states (I live in Virginia) have told me not to take any NSAIDS (ibuprofen, naproxen, advil, etc) as they thought my meningitis might have been caused by some sort of allergic reaction to these as well (although I doubt this very much). I wish I could take an advil as I think it would help what feels like inflammatory pain in my head & neck daily but am scared to. They did every test known to man in the hospital - twice. I was tested for Lyme, enterococcus, Cryptococcus, Herpes 1 & 2, HIV, something with mice, autoimmune causes, cancer marker screening; you name it - I've been tested for it - all negative. I'm not sure if I was tested for West Nile which is a question I plan to ask my MD next visit. Final diagnosis: Asceptic Meningitis. I continue to remain hopeful for a full recovery and try to remain grateful for what I have and remember how much worse it could be; I'm alive after all. Must admit, yesterday I had two crying spells & felt a bit sorry for myself but I refuse to beat myself up about it; today is a new day and I will try to make the most of it. Yesterday evening I actually took the dogs for a 15 minute walk outside for the first time since my second hospitalization which is the first time I've left the house in almost 2 weeks. One week ago I couldn't even leave my darkened bedroom because of the light without looking like Jackie O. in my sunglasses. I have a lot to be thankful for. I thank all of you for your posts. It helps so much to know I'm not alone.

[Amrita-A]

Hello and welcome,

It sounds like you have been through a lot. I hope you just keep feeling better and better. Did they do a lumbar puncture?

I am no expert, but from what I've read, recurrent meningitis is caused by a herpes virus and is called Mollaret's Meningitis. There are some posters here who have it.

I am also so grateful for this forum. It makes my experience valid.

Good luck to you!

Amrita xo

[Hidden in reply to Amrita-A]

Hello Amrita, Yes they did 2 LPs which is what most of the tests were run from. I've been told it's rare to get it more than once too but the more I read here the less I believe that to be true. They tested for Herpes 1 & 2 (HSV1, HSV2) twice and both were negative twice. I have been told they have no explanation as to why I contracted mine & that I am to treat it as a brain injury that will "just take time" to heal. It's very frustrating but I do see an overall improvement as time passes. Best of luck to you as well!

Susan

[Hidden in reply to Amrita-A]

How do you get your picture in the little circle by your name? I'm so embarrassed by my HUGE pic!! I was trying to get a small pic in the little circle. LOL!

[Amrita-A in reply to Hidden]

Hi,

If you are asking me, that is the picture they gave me. I had nothing to do with it. My turn to chuckle! xo

[Amrita-A in reply to Amrita-A]

And I thought your picture was lovely. It's nice to put a face to the profile. xo

[Starry]

Big hugs repeated attacks must be awful. Well done for getting out just a little bit with the dogs. That always gives me a lift. Little goals and day by day progress will come. Xx

Turmeric and ginger are natural anti inflammatories, I've started to use them in cooking and herbal teas to try to help my viral aftereffects.

[Hidden in reply to Starry]

Thanks so very much for the turmeric & ginger tips!!

[Tortie360]

Aww you poor thing. Hope things start picking up for you. Best wishes.

[Gaia1]

Thank you for your story (and for everyone's story)! My son, who is 11 got it from camp since June. He went undiagnosed for 2 weeks before being hospitalized. He experienced a lot of what you're saying. He had to start school in mid August. I hate that the doctor's seems to think this is no big deal and should be cleared up no time. On the other hand, one pediatrician admitted that it wasn't so for her when she got it in College. You need lots of TLC and patience with yourself. My son had lots of joint pain (comes and goes now). He said swimming helps to feel better/normal. He has a bit of "fuzzy" brain and forgets things almost completely sometimes...meaning evening talking to him about an incident will not bring back the memory of it happening. This forum brought tremendous comfort to me! Like Amrita says, it validates our experiences. My heart goes out to all of you. Wishing everyone health and healing!