7 years post aseptic meningitis and still with headaches and flu/bronchitis/pneumonia requiring ER care

[Tinaswtpea]

I am seven years post aseptic meningitis where I was diagnosed with permanent damage to my left occipital area of my brain. It took 6 months to get the pain under control...for the most part...I have been taking 800 mg of neurontin daily for at least 6 of these years. I went through pain Mgmt injections in my head and multiple meds before this worked. Also lexapro 10 mg daily and Xanax as needed as stress brings on headaches. With the headaches I get blurred vision to my left eye, hearing loss to my left ear. I have a loss of concentration at times, expressive aphasia often.

What is actually concerning me more at this time are my frequent bouts of illnesses. They seem to be getting worse. I had pneumonia in February and now with the flu and bronchitis. Both required ER visits with iv fluids, steroids, etc.

Is this going to last forever?? I have an incredible family, a wonderful career and I feel like I’m missing so many things because of this. Not to mention the burden I place on everyone! Is anyone else having problems like this?? Please advise

[Barbaustralia]

It's so hard I know hang in there

[Vmzoster]

I'm so sorry you are going through this! I'm not a doctor and I'm not sure if this will help but zinc attaches to the receptors that many cold and flu viruses attach to when making us sick. The basic idea is that if zinc is on the receptors, fewer viruses can attach and proliferate. After meningitis, I started taking zinc every other day (you can take too much zinc) and washing my hands after pretty much everything I do (going to grocery store, getting gas, or even just after a few hours in my own house) and hydrating with a ton of water as well as lots of orange juice to help keep vitamin C levels up. I know that isn't everything and we will still get sick sometimes but it has helped and I have skipped multiple of the illnesses that friends and family have gotten. I live in a bit of fear about the road even small illnesses could take me down after meningitis. It isn't that I'm not active an don't do fun things anymore, I'm just extra cautious. I also ask friends and family not to be around as much as is possible when they are sick or have a cold. Meningitis is horrible and it seems to be the gift that keeps on giving. Wishing you the best!

[Keep-The-Faith in reply to Vmzoster]

I am 15 months past vm which left me bedridden & right when it was starting to lift I got pneumonia & now a uti so I'm on antibiotics. I do take zinc most days but wonder how much do you take?

I've heard we get sick easier now..I never did before. Many things still bother me like tv, movement, too much stimuli, noise but I pray that it lifts in time. I am still in bed & live a lonely life hoping for change soon.

I pray for all of us everyday 🙏

[Keep-The-Faith]

I've always wondered if meningitis depletes important nutrients. Most docs don't test for this. Maybe go to a functional medicine doctor or naturopath? Just a thought. I know our immune health is super important which would be why zinc helps. I'm trying to build mine up with good healthy foods & suppliments. Hope you find some answers. 🙏

[Vmzoster]

I take a multivitamin each day that has 100% daily value (15mg) of zinc in it, and every other day, I take a Calcium, Magnesium, Zinc combo vitamin supplement by Radiance Platinum that has an additional 15mg. It seems to work well for me but who knows if it is placebo? I am lucky that I am super active again: hot yoga, running, biking, hiking and weights, back to normal work hours, etc. But you are absolutely right that it is not the same. Some days I feel almost completely normal and other days I feel pretty off. For example, yesterday and today I am so tired that I feel like I had some sort of sedative or something and I'm having trouble concentrating, remembering things and staying on task. Unfortunately, I can't do caffeine but I wish I could because I really need it right now. I had zoster meningitis mid-January. So I'm only 4 months out. I know it is a long recovery. There are times when I forget it even happened and other times I feel like I am viewing life through a tunnel. For some reason, starting weights really helped, brought my strength up and energy as well.

[kookoo4rx]

Last year was my third bout of VM. Being much older now it has taken its toll on me but I have been blessed with only fatigue at this point in time and occasional auditory or balance issues. I have been supplementing with Calcium Magnesium and Coq10 supplements but had not heard of the Zinc before reading these comments. During the winters I usually take a goldenseal and zinc supplement just to avoid bad colds but now I may try introducing some zinc and see if I see any improvements. I hope that all on this chat can find some relief from the left over symptoms of this awful virus

[IRHONDA]

its a hideous disease …. I am 64 and had 4 bouts of full blown vm, Molarets if you have had it more than once its more than likely Molarets SYndrome, and I had a smaller bout but the head pain was unbelievable and its left me exhausted this time but it always takes me around15mths to get over it as much as im going too....but this one has been pretty bad I should have gone to hospital but I had my 2 dogs to look after so I laid in bed for ten days by myself they sat with me god love them....if anyone wants to read a book on Healing get a hold of Becky Dvoraks HEALING its is so good its preobably helped me more than anything , actually I know it has... but I am going to get the vitamins when I can afford them... I was told 2 weeks ago to get the anti viral vitamins so I kept the name of them and I will get them soon I hope.

[IRHONDA]

you need to get your self really healthy … as others have been saying some anti viral vitamins … build your immune system up … and don't stop always keep it healthy that's really important....

[Tinaswtpea]

Thank you, everyone for your words of advice. I am seeing an infectious disease doctor next week and will have him discuss with me ideas and solutions. I will continue to be s part of this group as I feel like we all have an unfortunate commonality.