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Living with tinnitus and sound distortion after bacterial meningitis

8 replies

CoffeeAndCats3 · 17/05/2026 23:16

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 under 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.

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:
DanielaHobbs · 18/05/2026 03:25

Hey , I had horrid ear symptoms and also severe hearing loss in one ear , very suddenly. Differently to you , mine was found to be due to a brain tumour . My sympathy goes to you. Try and speak to a therapist who can help you manage your emotional response to the tinnitus. Best wishes .

CoffeeAndCats3 · 18/05/2026 05:30

DanielaHobbs · 18/05/2026 03:25

Hey , I had horrid ear symptoms and also severe hearing loss in one ear , very suddenly. Differently to you , mine was found to be due to a brain tumour . My sympathy goes to you. Try and speak to a therapist who can help you manage your emotional response to the tinnitus. Best wishes .

Thank you? How are you you doing now? Was the hearing loss permanent?

I have spoken to someone but aside form mentally trying to stay strong, I didn't find it very helpful tbh.

OP posts:
crazycatladie · 18/05/2026 05:38

A family members tinnitus improved with hearing aids.

DemonsandMosquitoes · 18/05/2026 08:10

I started with pulsatile tinnitus and dizziness three years ago. No cause was found. MRI clear. The dizziness went after three months, it was hideous, but the tinnitus is still there 24/7 clear as day. I can tell you my heart rate just by listening.

CoffeeAndCats3 · 18/05/2026 08:19

DemonsandMosquitoes · 18/05/2026 08:10

I started with pulsatile tinnitus and dizziness three years ago. No cause was found. MRI clear. The dizziness went after three months, it was hideous, but the tinnitus is still there 24/7 clear as day. I can tell you my heart rate just by listening.

Does the tinnitus still bother you after 3 years? Dizziness is awful. I only had it a few times but thankfully this seems to have fixed itself.

I think I could get used to a regular pattern, maybe. However my booming/echoing/reverberation is really tough to adjust to.

OP posts:
DanielaHobbs · 19/05/2026 04:59

CoffeeAndCats3 · 18/05/2026 05:30

Thank you? How are you you doing now? Was the hearing loss permanent?

I have spoken to someone but aside form mentally trying to stay strong, I didn't find it very helpful tbh.

Hi, thanks for asking. Before my operation my tinnitus was relentless , day and night. Lots of strange distortions and pulsations (circulation , heartbeat, music, you name it!). The first months were extremely sad but then I almost habituated over time and the noise/tinnitus became a less central part of my life. The operation for the tumour made me completely single side deaf. Tinnitus , bizarrely, completely disappeared from the moment I woke up on the hospital recovery room .

CoffeeAndCats3 · 19/05/2026 05:28

DanielaHobbs · 19/05/2026 04:59

Hi, thanks for asking. Before my operation my tinnitus was relentless , day and night. Lots of strange distortions and pulsations (circulation , heartbeat, music, you name it!). The first months were extremely sad but then I almost habituated over time and the noise/tinnitus became a less central part of my life. The operation for the tumour made me completely single side deaf. Tinnitus , bizarrely, completely disappeared from the moment I woke up on the hospital recovery room .

I'm sorry about your hearing, but losing the tinnitus must have been a huge bonus!

OP posts:
DanielaHobbs · 19/05/2026 15:37

CoffeeAndCats3 · 19/05/2026 05:28

I'm sorry about your hearing, but losing the tinnitus must have been a huge bonus!

Yes, it was . But please don’t lose hope. The brain learns to ignore it over time, or at least , it becomes slightly less intrusive after some time.

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