"Those post symptoms you are experiencing couldnt possibly be related to meningitis" Yeah right!!

[revygirl]

It always makes me so frustrated when Dr's think none of our problems stem from post meningitis issues. The government really needs to start doing long term follow-up studies on both bacterial and viral meningitis sufferers to confirm long term side effects of the disease. Its very nice to have these forums available to discuss issues with other people. These were not around 14 years ago when I had viral meningitis at 31 years old. Mine started with an extremely bad flu-looking back I should have gone to the hospital at that time as I had a fever approaching 106. Got over the flu and then was diagnosed a week later with meningitis. Literally felt like I was going to die-which I didn't really mind at the time as the pain was so bad in my head that death would have been a welcome friend. Spent 5 days in hospital. Its odd that Dr's could not attribute to a bacterial cause when the antibiotics made such a huge difference. At any rate-13 years later and I have never been the same. It took me a good solid year to really gain my physical strength back. I slept a lot that first year-my body and mind really needed it and I obliged. Prior to VM I was probably one of the least likely people to suffer from depression and anxiety. Well that all changed after VM as I have suffered terribly with both over the last 12 years. I think I probably had some symptoms of PTSD in there as well. I have very bad headaches to this day-again headaches were something I never experienced prior to VM. Uptb10 years after-I had headaches which I actually referred to as a post VM headache. They felt exactly like my original VM headaches-except not nearly as severe. I have suffered from Fibromyalgia for the last 10 years as well as Ideopathic Small Fiber Neuropathy for a couple of years. My nerves are completely messed up. Now I know that I was never the same healthwise after VM-the question is though-was the cause that horrendous flu, the VM-all of those toxic antibiotics they pumped into my system OR a combination of all 3? Personally I think Meningitis is akin to a brain injury-it make take someone a long time to recover or they may never fully recover. Again until they start completing some long term studies on long term effects that dont appear until months or years after-good luck finding a Dr who will connect it to the Meningitis. The best advice I can give is be patient with yourself-you all survived a terrible disease, there is a good likelyhood there may be some long-term repercussions but at least you are alive.

[jenny2448]

I have had meninges encephalitis 10 weeks ago and I get an instant migraine from any sort of light. So I constantly have a headache. I bought a good pair of sunglasses and they help if i have to go outside. I have other health issues and not able to have massaging on my neck but am able to meditate quite often throughout the day.

I hope yoh get some relief soon. Jenny

[MarkJohn-SD]

Reading your post, I felt almost like I was reading my own record - minus fibromyalgia - only because the MD didn't think my symptoms where that. Maybe - maybe not - but VM (7 months post), SFPN, increasing frequency of migraine (usually I worry it might be VM again). Other after effects include light sensitivity, inability to concentrate for long, eye strain on computer (I am IT Pro - go figure), cannot read for long, or at all most times and I was an avid reader. Much more.

My MDs also don't believe the burning whirling back pain - deep inside - not muscular, not bone, feels like the spinal cord spinning circles with fiery cords snapping about. Neuro said "not possible."

Last October, I stopped gabapetin, and all my other meds - mostly because

1. Gabapentin side effects include increased anger/agitation, and

2. Most of my meds side effects include weight gain.

My MDs all want me to lose weight, but keep giving me meds that cause gain. So I QUIT. Q. U. I. T. ALL PHARMACEUTICALS (except the one to help prevent VM of course).

Now 2 months later, down 40 lbs. (2.8 stone). Not even trying. Appetite just became what it needed to be.

As for pain of SFPN, I use natural sources. No more chemicals. Period (expect sumatriptan to kill migraines).

So medicine in US does not and probably will not any time soon recognize the long term effects of VM. So, I am putting it all into my Lord and Savior's hands, and just keeping it natural and as organic as possible.

Good luck to you.

[revygirl in reply to MarkJohn-SD]

It is so true about light and noise sensitivity. I worked in an office for years under those fluorescent lights. After VM I had to have as many lightbulbs as they would allow, taken out over and around my desk. The lights would give me terrible headaches and just suck the energy right out of me. I could no longer be on the computer all day either as the eye strain and pain leading to inability to concentrate were just too much. I don't work in an office environment anymore and the lights and computer are some of the reasons why. Wow we do sound like twins! Im on a lot of different meds including Gabapentin and Cymbalta for severe nerve pain. I too have had a ton of weight gain-100lbs over the last 3 years. I unfortunately cant go off these meds at this time as the pain is absolutely agonizing. I am on long term disability which leaves me practically at poverty level for yearly income. I wish I could just go off all the meds and do alternative/natural treatments however none of those are covered by health insurance in Canada. Yes the last 14 years asking Dr's if any of my problems could be related to the VM. All looked at me like I was crazy and told me it wasn't possible. They even told me way back when that my post VM like headaches were not related lol! So from what Im reading-it sounds like Dr's now at least acknowledge that connection! I too would not be here today without God's help. It's a terrible disease to get and can be a very difficult disease to survive as well.

[Faith8990 in reply to MarkJohn-SD]

MarkJohn-SD what natural sources are you using for the SFPN pain? I just added turmeric to my arsenal and have started a new joint/bone supplement. My neck still kills me daily. And the doctors just look at me and tell me i have a bulging disc and arthritis- none of which bothered me before the virus - and try nothing. Id love to know what all helps you!

[RestisBest]

When you think how much money is pumped into arms in the world, just a few percent of that would maybe help find the cure for cancer and the after effects of meningitis!!

I totally agree, Patience and sleep is all we have to help this wicked trauma.

[KATIESTR99]

Totally agree with you. I had BM 3 yrs ago and all these symptoms i get as well...esp very sensitive skin ...i think you are so hell bent on recovery in the first year or so all the other bits become apparant later on ...x

[Helpman]

The big problem is that they don't know vm and what to do

[heatherbrereton]

I so empathize with these comments. My doctor's practice just have no idea what the after effects of this rotten illness are. I have had one hundred percent more support from this forum than I have received from going to my GP and in fact I don't know what I would have done without it. Acupuncture has been my saviour. I would recommend it strongly for anyone experiencing post meningitis headaches, neck problems or ear/hearing issues. I'm ten months on and operating on about 65% of my former energy

[OlamanaMartel]

I went to hospital a week or so before I landed in the hospital for 1 1/2 weeks with leptospirosis pneumonia and v/m . I read that there is a precursor that is like the flu. U kind of recover a bit then it really hits . I understand this is how it develops. It really seems the medical field really doesn’t know much at all but what to give u to save you. Witch really at that time is not really on your plate . I told them when I checked in just put me to sleep permanently or temporarily, your choice! I said I was fine dying, but she said , don’t say that or u will end up in psych and never get out of here. I sat awake for the next to days watching the clock tic , as it was far too painful to sleep. Ironic there is a huge clock right at the foot of the bed, so hard to miss. When the swelling went down I napped on and off. Yay. 4-5 months later I was able to get up and about and am actually working on projects I would have loved to have been doing during my illness. Lots of studies need to go on in the medical field on this subject. I didn’t even get a prognosis, just walking papers, and good to go!