New here 6 months post bacterial meningitis - hearing and organic changes to brain?

[skintown]

Hello,

I'm 6 months post bacterial meningitis and recently began having problems with my left ear. It seems as if someone has turned the volume down and I have been getting ringing in the ear, dizziness or what I can only describe as motion sickness. In addition, to this have become extremely tired again, zero energy which is disappointing as I did feel like I got it all back not so long ago. I was recently at my neurologist who is referring me to ENT and also neuro psychiatrist to help my memory but they mentioned organic brain changes.

I'd like to know if anyone has had similar experiences of this and if you could kindly share?

Many thanks,

C

[Hidden]

Hi C,

I had BM 6 years ago and had, and still have singificant ringing / static in my ears - I understand it to be tinnitus and while it is annoying I can largely zone it out now (with time, a bit like road noise if you live near a road and you get used to it and stop hearing it). I used to use a white noise maker to drown it out and enable me to get to sleep but after 6 months or so I didn't need to use this anymore. I understand that tinnitus is a common side effect of BM.

The nurses on the Meningitis Now phone helpline suggested that I have a hearing test and I asked my GP to refer me for one. As I had been at home in a relatively quiet environment after coming out of hospital I hadn't realised that my hearing had been damaged, but starting to interact with the world again I realized that I could hear background noise well but not speech. The hear test confirmed that the higher frequency of my hearing had been damaged and I was given hearing aids which have made a huge difference (although I took a bit of time to reconcile myself to needing/wearing them given I was in my early 30s). I gather this damage to the higher frequency of hearing and struggling to hear sibilants is common post BM and I feel that a hearing test should automatically be offered by GPs.

I also suffer with the feeling of dizziness and sickness if I move my head / ears out of their normal range - tipping my head right back and children's swing and roundabouts are real triggers - the effect is immediate and debilitating. Over time it has improved only marginally but I get over it much quicker than I used to and have learned what to avoid. I also suffered from poor balance post BM. Interestingly I can do forward facing stuff including mountain biking and skiing fine now - and moving forward my balance is fine - I think my nervous system has compensated or worked around the problem; but things like running backwards or being in a car which reverses at high speed cause me problems still.

I don't know if that is anything like what you are experiencing but I would encourage you to have a hearing test. Also if it is tinnitus my experience is that this and the dizziness/sickness does improve so don't despair.

Jos.

[Runnerma]

I also have a similar situation. After having bacterial meningitis, I have what appears to be permanent hearing loss more so in my left ear with tinnitus that some days is unbearable. I had trouble with balance. I returned to full time work 2 months late then gradually my after effects seem to worse. I avoid crowds as much as possible. Physical therapy seemed to help. I am still at a loss why the medical community still knows very little about BM & how to help people deal with the numerous effects , in US people think that children are affected. Hopefully this will change,

[LMains]

Definitely get yourself to an ENT (Ear, Nose and Throat) asap. Not sure which type of bacterial meningitis you had, but I know for a fact that pneumococcal BM has a nasty post side effect of causing the cochlea inside your ear to ossify. You have 3 loops for balance on top of your cochlea and when this connection starts to harden, balance issues ensue. (Nothing can be done about that- your eyes will have to take over, helping you balance). However, if you become deaf in that ear and want a cochlear implant, you need to do it before the cochlea ossifies. I had a cochlear implant in my right ear just 3 months post meningitis, and surgeon said there was just a slight bit of ossification.

I just had my left ear implanted at 15 mos post meningitis and same surgeon said that my cochlea was almost completely ossified (filled with bone).

Now my ears are probably much worse than yours will ever be because the infection started in my left ear. But find the best ear doctor you can where you live.

(If you live in NY state, California or Texas, let me know and I can get you a name!)

[SunflowerGirl]

Hi C,

Yes, I agree with Josephine, Runnerma and L. Mains. Our symptoms sound very similar.

I had pneumococcal meningitis twice, the first time 6 and a half years ago and the second time 3 and a half years ago. Lots of symptoms, but with regards to what we are discussing here; unilateral hearing loss, tinnitus in one ear and balance difficulties. Interestingly, 6 months after the first meningitis, the audiogram showed hearing down to 50% in the high frequencies, (no ossification) but at 3 years post BM, testing showed that my hearing had mostly recovered, 90% in these same frequencies that had been so low two and a half years earlier. Despite this, my good ear is my preferred ear and I have difficulty in busy and noisy places. My brain adjusted when the hearing was reduced in one ear and sometimes it seems that I still have the significant hearing loss in my bad ear. With regards to balance, the brain will also slowing become accustomed. I also found that is important to keep my eyes on what I'm doing. The eyes can compensate of the loss in the balance organs.

Overall, as mentioned here, it takes time but slowly the brain can recover. For me, its taken at least a couple of years. The only thing that has not improved is the tinnitus, but I'm used to it.

All the best with your recovery!

M