Recurrent Viral Meningitis

[Chri5ti]

Curious if anyone else has recurrent VM? I find this site absolutely invaluable as I felt so alone and isolated before I found it. Now I know I'm not alone. That alone has been wonderful. I was feeling pretty good as I'm about 12 months from my 6th attack/flare up and was even starting to look for employment again. I'm very lucky that my spouse has a very good job, but even so the credit cards are piling up and I really need to get at least a part time job. But yesterday I had a "fatigue day" and could barely get off the couch all day! Just curious if anyone with recurrent VM has any long time chronic fatigue strategies. Or anyone? I'm just losing battle. I feel like I see the light at the end of the tunnel and then relapse with either a cycle of fatigue or another bout of VM. My neurologist is wonderful but he even admits he doesn't really understand.

[RemainingHopeful]

Hi Chri5ti, I'm on my 3rd round of VM of unknown origin. I had it once when I was 18, again many years later, and again about 6 months ago with the last time leaving long term effects (still having symptoms). My understanding is that people with recurrent VM usually either have it caused by HSV (Herpes) or have what's called Mollarets (which I don't fully understand). I have been tested for HSV 1 & 2 twice and am negative. I'm not sure if one can be tested for Mollarets and I don't believe there's a treatment so, who cares?!? From this forum I've learned that rest, CBD oil, Magnesium, Zinc, warm showers, Topamax, cranial massage, acupuncture, diet which is dairy & sugar & gluten free, Vitamin B2, B Complex, Tumeric Tea - all suggestions that have helped for people. As my name implies, I'll keep remaining hopeful that one day I'll be symptom free. Good luck to you and all of our doctors out there!!!

[Chri5ti in reply to RemainingHopeful]

Thanks for sharing. I also have tested negative for HSV 1&2 in my spinal fluid. I thought Mollarets was when it was caused by HSV and that you can have recurrent but not Mollarets. My infectious disease doctor said each time we will just keep testing for more and more but that we may never know my cause. I tend to get it every 2 years or so. I also take Magnesium, Zinc, and eat very little processed sugar. I try to eat none but fall off the wagon more than I would like to admit. I took it a step further and eliminated all grains from my diet, not just gluten. Other grains work the same way, so if eliminating gluten helped you at all I would suggest ditching the others as well. I also take Trokendi XR, first thing that has helped me with headaches. Basically an extended release Topamax. Funny because I can't take Topamax, the side effects were horrible for me but the Trokendi XR is fine. Good luck and stay hopeful!

[RemainingHopeful in reply to Chri5ti]

Hi Chri5ti, I'm curious about why you couldn't take Topamax because I had a paradoxical reaction to it in that it made me terribly hyper which I'm sure exacerbated my headaches. The docs wanted me to double the Topamax then (I haven't). Did you have the same reaction? I also lost a lot of weight.

[Chri5ti in reply to RemainingHopeful]

Topamax made me feel like my heart was racing and I felt "wrong". I can't really explain it any better. But I really didn't like the way it made me feel. I had some tingly hands with the Trokendi XR when we upped my dose, but it went away. I went from 100mg to 200mg. I had a headache pretty much 7 days a weeks and at the 100mg I went to 5 days a week so we upped it and I got the tingly hands. I didn't even know it was a side effect, thought it was something else, but it has started to go away. Not 100% gone but I am down to headaches 3 days a week and have had only one migraine in the past 2 months. I am 12 months from last VM attack. Hope this helps.

[4timerVM]

Hi Christi. Am a 4x survivor. Last time I also had encephalitis. 28 days in hospital and rehab. Thought I was done with this. Haven't had this in 13 years. Guess it was my time. But I am getting better. You will too.

[Chri5ti in reply to 4timerVM]

Crazy. I hope you feel better fast. Guess we just have to realize it could always come back and live best we can.

[Barbaustralia]

Doctors don't understand but I hope u get better