Hi there everybody. I’m going through post meningitis recovery and even though it’s been about 8 years since I’ve been “ok” I still have bad balance and hearing problems and tinnitus which makes me unable to sleep at night. Just trying to meet new people with similar interest and communicate about our struggles
Also was born with fibrous dysplaysia if anybody knows a link for that on here or anybody that may have it
Thank you all 😃
I can empathize with you due to imbalance & tinnitus. I finally was referred to physical therapy which did help my balance. Tinnitus still causing good days & bad days. I use white noise to help me sleep. It is worse when I eat salty food. Hearing also seems to come & go which is very frustrating!
Yeah I was “basically”completely deaf at first and then I trained myself to hear again by listening to my music really low and gradually turning it up and back down and since I already knew the lyrics by heart I could compare what I was hearing to what I actually knew the artist was saying and my hearing in my right ear came back next to perfect “around 80% hearing” although my left ear is stuck at 12% or worse. But after a while it started shutting off again and on again like every other day almost
And I really want to try therapy for my balance as well and particular therapy’s I should try
HI. I had Bacterial meningitis 14 months ago. It has left me with several residual problems including pulsatile tinnitus where when I lie down I have a thumping in my head which reflects my pulse or heartbeat. Really, really annoying and distracting. The best way I have found of dealing with it is to put an earplug in the 'good' ear and listen to the radio until I go to sleep or if and when I wake up during the night. This isn't perfect but has certianly improved things for me. I have seen the doctor and an ENT consultant and had an MRI scan in case there was a tumour resulting from the bleed on the brain but all results came back as negative. I still get very dizzy when I lie down but I deal with this by propping up the back of my bed and being very careful not to rush getting up or lying down! Not much help, I'm afraid, but I do sympathise.....
Heather
Hello. I am curious can you have a bleed on the brain with meningitis? I am just trying to figure what happened to me over three months ago. I have had cts, mris, and lumbar puncture. I had blood in my cfs fluid but my supernatant was clear. This was to rule out a bleed on the brain. Any help would be appreciated.
Hi there. The report that the hospital sent me home with said I had had meningitis and a bleed on the brain..... so yes, in my case it happened. I know that my cognitive awareness was definitely impaired for three months or so after and I am still not as acute as I was. But happy to be as well as I am....
Did they say to do anything about the bleed or was that just a part of it? Also when you did have the meningitis did you have a fever? Sorry all the questions but I am very sad because of not knowing.
Yes heather me and you are in the same boat I’m afraid. But the music is a good idea I’ll need to try that
It’s hard sometimes though cause every time I hear music I get hype lol maybe some Beethoven would help 😂
What music helps you heather?
Ask your GP to refer you to a Neuro Otology clinic (Balance clinic). They will assess your balance problems and you may be helped by specific Vestibular exercises to improve your balance.
Hi I had meningitis going 5 years now, completely deaf in 1 ear severely hard of hearing in the other, severe titinus it does not stop me from sleeping as I get extremely exhausted, I really miss music as it jus sound like a noise not enough hearing to identify the song, I am soo unhappy sometimes as I love to holiday and other things but always need someone to go with because I can’t hear announcements so don’t feel comfortable on my own, any suggestions would be appreciated
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