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Living with tinnitus and sound distortion after meningitis recovery

3 replies

CoffeeAndCats3 · 17/05/2026 06:59

Last year I was really unwell with bacterial meningitis. I recovered pretty well after 2 weeks in hospital, with just some lingering lethargy, but most other symptoms went away. Thankfully.

However I've been left with tinnitus + other ear issues. I had some hearing loss initially, but it seems to have mostly recovered on an audiogram (though I do feel I can't hear as well as I used to?). But the tinnitus is driving up the wall. I have the standard issues hissing/EE in both ears that seems to vary in loudness. But I also have some sort of pulsing low humming noise that reacts to noise. I'm on a flight path and when a plane flies over (100x a day) it seems to change the pattern of the tinnitus?? The noises make it change from a drone to a pulsing drone but in no pattern, and then goes back to the steadier drone as soon as the noise passes. I may have to move somewhere quieter tbh. But I also get it with the dishwasher, when the central heating kicks on etc etc etc.

The ENT couldn't really explain how or why, but for some reason my left ear hears sound waves differently now and causes patterns in sound. I've looked online and it looks like something called dysacusis. It's about 10 months now I've had it, so I'm probably stuck with it now.

It's totally ruined the past year. I can't even use masking music as anything with a low noise to it seems to cause the pattern too. Thankfully it doesn't seem to happen with voices. I spend a lot of time in silence.

Does anyone live with something similar? I guess its probably permanent at this point and I try to keep busy and stay positive but its just bloody depressing and makes me cry most days :(

OP posts:
JaspersCarrott · 17/05/2026 07:17

I've had tinnitus for about 3yrs - mainly buzzing, and sometimes pulsating. I've had various tests because of the pulsating, but its not been linked to anything. I'm fortunate that masking noise does work for me, and my tinnitus is manageable. I do sometimes feel a bit sad that this will probably be with me for the rest of my life.
You seem to have lots of different things going on with your hearing - you have my sympathy. There must be many different levels / sounds that people experience, and its not always easy when people say just ignore it, or put the radio on

violetcuriosity · 17/05/2026 08:19

Hi OP- I’ve recently had a serious immune attack on my spinal cord and brain stem and I can relate to what you’re describing although mine is slightly different. I had a strong fluttering in my right ear during my time in hospital which has settled to now happening when noises of a certain pitch happen, it makes me feel really overstimulated and they seem louder than they actually are. No advice, but hopefully it’ll continue to improve for us both x

CoffeeAndCats3 · 17/05/2026 10:50

Thanks for the responses. I had no idea it could be so disruptive, or cause such significant mental health effects :(

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