_{Did anyone have Viral/bacterial Menegitis, Parasites or H1N1 before they were diagnosed with IIH}

Did anyone have Viral/bacterial Menegitis, Parasites or H1N1 before they were diagnosed with IIH?

I actually suffer from recurrent viral meningitis. I had it 9 to 10 times before my initial IIH diagnosis. Talk about pain an suffering this is never ending for me.

I've only had since my IIH surgeries, 4 times in total.

It's scary to think that you've only had it after surgery. My neurologist just told me on Monday that based on my next opening pressure he is referring me to neurosurgery for a shunt. I have been quite miserable.

It doesn't always happen so don't let it put you off , it's like all surgery especially the ones that include having a foreign body inserted, it has it's risks. I had surgeries in between and after my bouts of meningitis but I knew the surgeries were necessary, and I just wanted my life back.

Thanks Heidi.

I had viral meningitis as a child. I was then prescribed Septrin to treat the meningitis which I was told actually caused my IIH. My Neurologist disputes that the septrin caused it and feel the meningitis is a more likely suspect. I was treated for IIH and then went into remission for over 20 years.

I was told the meningitis caused my IIH too.

I don't understand the recurrent viral meningitis. is it the same virus reactivating, like a herpes virus or varicella?

HSV present in CSF despite no external breakouts at all. Lifetime antiviral suppressive therapy still doesn't stop recurrences. It has been a few years since last case however.

so, actual PCR of the actual virus present, or just antibodies in CSF? IgG, or IgM?
this is interesting because my mother who I believe has IIH also, says she is a lot better on Valtrex.

so do they think it is the actual meningitis that has caused your IIH, or just the presence of the HSV? does treating the HSV prophylactically treat your IIH?

thanks,
Deb

From what I understand the virus is what causes my constant bouts of meningitis. The virus was actually present. Valtrex is great for suppression but I still got sick every few years. Upon changing insurance I needing to switch to acyclovir which seems to be working just fine but it is harder on the stomach and has to be taken more often.

My neurologist believes that my many cases of meningitis are what has caused my IIH. I will be on suppressive therapy for ever. I am just hoping for some relief from the pain and other IIH symptoms. I am supposed to be referred to neurosurgery after my next lp. ID doesn't believe there is a major issue as long as I DO NOT stop the antiviral medication. We shall see.

Relli

Wow, I see that there are a few that have had meningitis. I got viral from a mosquito bite in 2005. I then got parasites while sick with the meningitis.While I was pregnant with my third child I got H1N1 and never recovered.

Have you guys all had something found in your CSF? I was told I had meningitis but by the time I had an LP they said my CSF was clear of infection. There was 6 weeks between diagnosis and LP as I remember (it was a long time ago) and they only bothered to do an LP because by that time I had IIH and they needed to bring the pressure down. They said the infection had probably cleared up but I'm not convinced.

penny; (Zoe?)
did they do an LP at the time they diagnosed you with meningitis: they had to have, but from your description they didn't? the symptoms of IIH can mimic meningitis, so if they didn't tap you at that time, you can't take that diagnosis to mean anything. meningitis is inflammation of the meninges, and the only way to diagnose it is to see changes in the white blood cells in the CSF, necessitating a tap. it can be caused by bacteria, virus, fungi, as well as autoimmune processes like Lupus. and Lyme, which has been implicated in IIH. your course is suspicious for that. have you been tested for Lyme?
Deb

hm odd...

I've never had meningitis (scared I will get it), I don't think I've ever had parasites, or H1N1...I've had some pretty bad flus, where they have thought it was meningitis but everything has always come back clear, absolutely no signs of infection anywhere.

This is really interesting!

It really is interesting..especially since I was diagnosed with encephalitis as a teenager, but I always wondered if it was IIH because he didn't do a spinal tap or any tests. One of the reasons I love this site!

I have had all the the above and I was starting to question if this was a recurring theme. My neuro-opthamolgist, in one appointment said to me "I have a funny thing your menigitis is creeping up again". That's when I had to ask.
Thank you everyone for your answers

Sorry to respond so late to this. I had what was orginally labled menigitis then down graded to viral syndrome many years ago. When I got sick no one else got sick but me. I think that's why is was downgraded to viral syndrome. After that I stated with the headaches that I was told was just migraines and stress and told to just relax. I was never put on any migraine meds because I was already taking meds for seizure disorder. ( to this day no one knows what caused or still causes the seizures).

Penny, how frustrating this must be for you. I admire your tenacity in getting to the bottom of this so that you can feel better.
My Ex had meningitis just recently. Seems he had developed a spinal fluid leak through his sinuses and that allowed the meningitis to happen, and they have no idea where he picked it up from either. Guess there isn't always a trail.