Meningoencephalitis Survivor

[MeningoencephSur5ver]

Hey everyone,

I had Meningoencephalitis back in 2011, and have had a headache (usually a 5/10) everyday since (yup, 7 years worth). About once every two months i'll have a 'blow' out and have to go to hospital for stronger meds to bring the pain level back to 'my normal'. I have tried Sandomigran, Endep and Maxalt, all to no avail. However, I tried them within the first year and decided to stop all meds after 1 and a half years of contracting. I tried every natural therapy under the sun (botox, acupuncture, cupping, massage, physio, even reformer pilates).

Most didn't help in the long run, some giving me a day without any pain, but it would return the following morning. I'd say I handled it pretty well for a 13 year old at the time, but now 7 years on (I'm now 21) its taken its toll and I think I'm ready to ask for some help again. I'm not sure whether to go back and try the same meds again? Or if anyone has any new suggestions to try? I'm open to pretty much anything at this point,

thanks in advance

[Vmzoster]

I’m sorry you went through this illness too as well as the continued headaches. Due to your age, I guess it wouldn’t be 100% possible to tell whether you would have been a headache and migraine sufferer regardless of meningitis as some other people are or not. However, I can say that there are some people on here who did cranial sacral therapy and it helped them a lot. I tried it once a long time ago but not since meningitis in Jan of this year. I was lucky, I had headaches the first two months but then they completely went away for a while (NEVER HAD HEADACHES BEFORE MENINGITIS). So I thought I was in the clear. Then all of a sudden I started getting them, full day headaches, almost two months ago. I’ve only tried minor stuff like ibuprofen and I gave up because it doesn’t do anything. I can’t take anything with caffeine either.

Anyhow, if you haven’t tried cranial sacral and your headaches are that constant and bad, it’s at least worth a try. I’d also go to an endocrinologist and check out all of your hormone levels. I’ll probably be doing cranial sacral soon just to give it a go.

Good luck!

[Chri5ti]

I'm so sorry. Seems like no matter what sort of Meningitis we have headaches in some form are our common denominator. But yours seem pretty severe! Have you found a cause are they just "there"? I thought mine were constant but air pressure is definitely a cause. Rapidly changing, either direction or when it stays low. I also tried several medications and they would wear off quickly or more often I just couldn't handle the side effects. It took two years till I found a good one, for me. I would advise going back to a good headache neurologist and starting over? I love my neurologist and while he doesn't understand recurrent VM he at least fully admits that. So we attacked my headaches as migraine first even though we know that before VM I would go years in-between migraines. The VM kicked them up to daily headaches that had the potential to turn into a migraine if I couldn't ease it fast enough. But at the end of the day it was at least a plan. I couldn't take Topamax because of side effect issues but I am doing pretty well on Trokendi XR (basically an extended release topamax). I was headache free for months until recently when I relocated to Florida. Which is in its hurricane season and we are having daily storms which is just killing me!

No matter what I hope you get some relief. Headaches are just so draining. I know what it is like to develop a pain tolerance but it still takes so much out of you.

[Cryptococcal_Ninja in reply to Chri5ti]

Definitely agree on the storms as changes in barometric pressure take a toll on tinnitus and balance.

[Jackiemerritt22]

Do you have any other symptoms blocked ear or ear infections in just one ear tinnitus you should maybe maybe look up CSF leak.

[OlamanaMartel]

I have the head aches still after 2 years sept 7. The only thing that gives me relief is norco. I only take it when I can’t take it anymore , because i lean towards constipation, taking 6 tramadol a day for fibro pain, and also I find the less I take of the norco the better they work, so only take when I know I will need them or for these nasty head aches I can’t get a handle on. Best of luck. I had pneumonia leptospirosis and v/m all at the same time. Not fun at all! Almost got to see what it was like to not b here any more .