Tinnitus after ear ablation

[gasconAlex]

Any ideas on what might work for tinnitus in an ear that is not there?

I've had tinnitus (tonality type) ever since I had a complete ear ablation in 2017. Obviously I have no hearing on that side but still suffer from tinnitus. The only thing that helps a bit is my CROS hearing aid with masking but the masker needs to be at such a volume it's fairly oppressive to use all the time.

[Beesmac]

Hi - Unfortunately the reason you probably have Tinnitus is because you have no hearing in that ear and it is your brain that realised there was no noise being heard so decides to put something there. This happened to me 2 1/2 years ago when a bout of Labyrinthitis left me profoundly deaf in my right ear, this happened overnight then a week later I began to hear music. I am left with Musical Ear Syndrome or “Musical Hallucinations” (look it up) I hear undefined repetitive music 24/7. I thought I was going mad until an Audiologist explained that my ears were the receivers of noise but as my brain couldn’t work out why suddenly I wasn’t getting any noise in that ear decided as I was a music lover, it would produce this noise for me. I was in a dreadful state but I am learning to accept it. Any masking you listen to must not be at a higher volume than your tinnitus as it will make it worse. When mine is bad I find distraction helps. If I am stressed my tinnitus usually ramps up. We all pray that one day there will be a cure x

[gasconAlex in reply to Beesmac]

I did have a small period of auditory hallucinations (including partially heard voices) but thankfully these were short lived and disappeared entirely after a few years.My specialists in ENT have passed this on as a neurological disorder following the surgery, unfortunately the local neurologists want it to be ENT.....

What I was hoping, perhaps over optimistically, was if anyone had any other solutions. The masker I use is adjusted for the volume of the tinnitus but unfortunately the tinnitus isn't quiet. A major issue is that when there isn't any noise and everything is calm the tinnitus seems worse so dropping off to sleep is an issue.

I have seen some efforts on the use of vagal nerve stimulation by a special TENS electrode having some effect but unfortunately this has been designed to sit in the left ear canal which was my operated side so I don't have a left side ear canal.

Always hoping for progress, hope things get better for you too.

[Beesmac in reply to gasconAlex]

That is a nuisance that no department wants to take responsibility. The only thing that helps me when my tinnitus is unbearable is I take a 2mg of Diazepam. Oddly enough, it is usually the next couple of days after taking it that the noise quietens. I don’t take them regularly, Although I don’t know the first thing about Cochlear implants is this something that may help you?? Hope you get some relief soon x

[gasconAlex in reply to Beesmac]

Cochlear implants are a no for me according to the specialist. They took so much out that I would have to go for a brainstem implant as the auditory nerve has been destroyed before where cochlear implants are connected. They will not try brainstem implants whilst I have functional hearing on the other side (which thankfully I still have).

I might ask about the diazepam but I try to limit drug use due to the other drugs that I have to take. Thanks for the advice.

[Beesmac in reply to gasconAlex]

I hope you can find some relief soon. I only take a Diazepam if my tinnitus is unbearable - I sometimes compare it to being in a lift and the doors won’t open. Just knowing I have something to take if I get panicky helps. I get to sleep by having a good book on the go and literally drop off reading. Tinnitus certainly rules our lives - ever hopeful that there will one day be a cure x

[doglover1973]

Hi Alex. As Beesmac says you have T because of your hearing loss. T doesn't depend on being able to hear . In fact it's more likely if you can't hear because your brain compensates for the lack of sound. I'm deaf in one ear and can't mask my T . I'm learning to live with it.

[gasconAlex in reply to doglover1973]

Luckily when I had one sided deafness I never got more than occasional T. Even with several operations that increased or stabilised the hearing loss I was never particularly troubled.

One point I will make is that even a deaf ear is useful. Before the ablation (which I had to have for life threatening reasons) the ENT was confident that I would not notice the hearing loss as my hearing threshold in that ear was over 80dB. Being totally deaf is even harder.

[doglover1973 in reply to gasconAlex]

I can imagine Alex. I still have residual hearing at the lower frequencies which no doubt buffers the T just a little. I really feel for you with no hearing at all. That's a challenge.

[Xene]

Yay gasconAlex, I can relate, completely deaf in one ear due to major surgery decades ago. High pitched extremely loud t 24/7, fortunately it never spikes but never reduces either. Stress does not affect it but lack of sleep tends to make it seem louder even though it’s not. All I have learned over the years is acceptance. Sorry I can’t offer anything else but we are all unique. Good luck on your journey.

[gasconAlex in reply to Xene]

Thanks anyway, maybe someday there will be something to help.