Please help me. I can't take this anymore

FWIW
Wear hearing aids both ears.
Left ear distorted. I hear the exaggerated S sound.
Can also be Z maybe X, F.
Told I have nerve damage.
Never had a real diagnosis.
They never did MRI, CT whatever.
The distortion is in my left ear.
And yes hearings aids amplify the problem.
If it’s nerve damage there is not a lot that can be done.
I was told that by the ENT that told me it was nerve damage.
One ENT did reconned a specialist to maybe do an MRI.
Never followed up.
Really don’t know if I care anymore.
I just live with it.

Thank you all for trying to help, this really is a nice community. Answers to all suggestions:

1. I am not in US. After going through a normal hearing test, I literally begged the Dr to approve funding of a HA, and then maybe I will find a helpful device. He literally laughed in my face. Said no way. Only said go see a neurologist, which I should… But don’t see the help in that. In the unlikely case that some scan shows the problem, I don’t think there is any medical action to try and actually resolve it.
   If I knew of a device that will alleviate this problem, I would invest even 10K USD, I’m serious.

2. CBT/habitation is impossible. I do believe in that as far as my tinnitus. But you can’t habituate hearing a sharp, heavily distorted S or X coming up every few seconds. Thats like telling me someone will poke your skin with a sharp needle every few seconds and I need to learn to ignore it. I do my best not to dwell on it extensively but it is painful to my ears and triggers headaches. Also, it throws off my concentration, so I have difficulty following speech. Can’t get used to that. I had it for a year already.

Yes, good point about Costco (or any provider, really) not willing to give it a try because there is is no loss of hearing. I hadn’t thought that far ahead and you are right, they aren’t going to treat a non-hearing loss.

Let me go further, to the spirit of my suggestion:

We all get old. I am 77. As we age we encounter physical problems. We go to the doctor. Mostly we get answers based in science or proven experience. Now and then - and anybody who is old certainly understands this - we encounter problems that have no good solution in conventional medicine. At this point, what do we do?

Some of my friends simply stop. And suffer. They have placed all their eggs in the conventional medicine basket. If their doctor (and referred specialists) don’t have an answer, or if the recommended answer doesn’t work, they seem to presume that there is no help and they don’t pursue other options.

I don’t stop. I look elsewhere. I have back problems, I have diverticulitis, I have these and other maladies that evade conventional medicine. What am I to do? What I do is look to what others in my situation have tried, or what I can think of that might relate. And often I have found relief in alternate forms of therapy such as chiropractic or acupuncture or dietary changes, none of which are explained by science or conventional medicine. I sometimes find answers in folk medicine. Or in things that I just dream up myself. And I have virtually never failed to find some sort of relief, so long as I just keep trying things that make some sense to me. I am a retired engineer. Engineers solve problems, it’s what we do. And when the going gets tough we try anything and everything that might have a shot.

In my younger years, due to my technical background and faith that conventional medicine can solve all problems, I wanted and expected a differential diagnosis and a double-blind tested solution to all my problems. Well guess what? I learned over the years that modern medicine doesn’t have all the answers. Now I’m not fussy about where I find relief, because I’ve experienced too many problems over the course of a long life that don’t have double-blinded answers. I don’t care anymore about double-blinded. I don’t care if it’s a placebo effect. I just want relief, so I keep trying one thing after another until I find something that helps.

So, it’s in this spirit that I offer an idea in response to the OP. This person has tried the conventional means and has come up empty and is suffering and truly desperate. There seem to be no red flags from his providers that would warn him/her of something dire, and his providers aren’t providing a solution or a referral. So… time to start trying anything that might have a shot, if you ask me. One thing I might try is, to find a hearing aid someplace, and stick in in my ear, and turn the volume down, and see if anything changes. It probably won’t fix the problem, but it sure wont hurt anything to try. And there is a certain amount of logic to it: These devices seem to process every sound in some way - what comes out of a hearing aid, in my experience, is never what went in to it. So, what’s to lose by trying?

What you do is certainly your call. If a neurologist was recommended, I’d encourage you to see one. I’d try to resist having preconceptions of what might or might not help.

I have pretty kickass Sony NC headphones XM4 the latest model.
Again they are somewhat less offensive with the distortion but they just take it down a bit.
I know I can’t solve this issue, same as HA don’t restore hearing. But I wanna live at peace with the world of sound, that’s all.
Today began a new job, have to listen to study material, and it’s simply awful.

I’m curious. If someone were to talk to you with lots of sibilants, would it be better or worse with background noise?

Something else to investigate.

Tinnitus & Hyperacusis Center6

Tinnitus (ringing in the ears) is common. So is decreased sound tolerance (hyperacusis and misophonia). Tinnitus Retraining Therapy (TRT) can give relief.

I think the same applies to CBT. Make no assumptions.

One thing I’ve been thinking about for this special condition is frequency lowering. If the issue manifests itself at the high frequencies where the sibilants reside, perhaps the frequency lowering technology to lower the sibilant sounds to a lower frequency may help address the issue.

But frequency lowering via frequency compression may still move other even higher frequency sounds into the space of where the sibilants reside, so even if the sibilants are no longer there to distort and hurt, the other sounds moved there may still distort and hurt just the same.

But frequency lowering via transposition and composition like that used by Oticon would give you option to turn off the amplification of the source region altogether so that no amplification will be done in that area at all, which might work. Of course this would require a completely occluded mold to block out the natural sounds at the source region from coming into the ear canal, so that the OP can only hear the processed/lowered sounds accordingly. Below is a screenshot explaining how the Oticon frequency lowering technology works.

I know that I said before that the use of hearing aids as an amplification device may not be appropriate for this case because it’s the attenuation that is needed, not amplification. But if the OP can find an audiologist who’s willing to work with him to find a solution, this can be just an idea to float around when brainstorming for ideas.

Excellent thought. There’s not a lot of natural, useful content in those higher frequencies other than music and harmonics thereof. Birds for one.

That is a brilliant idea. Through headphone Equalization I can tell you that it seems that all HF (treble) can make it worse. I mean if I increase 4khz or 8khz they will both make it worse, just in different ways as HF have different effects on sound. One will increase attack, another can increase presence, another gives more clarity (the only way to help this issue is decrease clarity. The more detailed the sound source the worse it is.)

With all that said, if perhaps the infected frequencies are indeed say 5-8khz (my amateur guess BTW) then if I can shift all sound in that range lower down, this could be a breakthrough.

I will schedule an audiologist. Thank you for a very creative suggestion.

You may need special ear plugs. I’ll ask my friend who has both tinnitus and hyperacusis what he uses.

Reconsider the Nuhearas. You may be able to lower the damaged frequencies below pain threshold but retain enough sound not to spike your tinnitus. You can experiment with your own sound therapy. You can dial in soothing sounds and mix it with the sounds of the outside world. You get a 30 day trial.

What you’re saying about cbt makes perfect sense. Try it anyway. What do you have to lose? Same with mindfulness training, Try to find a tinnitus counsellor if you can.

There are people on the Tinnitus Talk forum with conditions like yours. They will understand what you’re going through if nothing else. Some of them have an all or nothing mindset I think is unhelpful ie they don’t want learn how to live with their condition. They want it gone.

All the best.

Hello again friend.
I would gladly try the nuheras, I just need to see how I can do that since I am outside US (around 4000 miles… Israel).
Fortunately tinnitus is not the main issue here. I’ve had it 15 years. It’s been louder, it’s been lower, lately seems my right ear is much louder, but my whole tinnitus condition is quite habituated. Tinnitus is dynamic in volume but remains a relatively static sound, so whole it’s loud and extremely unpleasant, in this case CBT and psychological techniques are very useful, because by breathing properly, accepting the sound on your ears as part of you, learning to live with it and forgive the tinnitus, as well as masking techniques, it is certainly possible to live with tinnitus. HOWEVER if I had silence in my ears, and only once every few seconds the tinnitus would strike, fade, strike, fade, that would drive me crazy. That’s the effect of my frequency issue, it strikes at random, but constantly throughout speech. That is impossible to get used to, and I have gotten used to very terrible conditions in my life, believe me.
One of the famous Chinese tortures is placing someone in a quiet room and playing an offensive sound every few seconds.
This is what I experience.

which is why I was suggesting the nuhearas. Imagine this scenario. You are in a social situation. You are playing a soundscape (water lapping on the shore for example) through your buds. At the same time the nuheara’s mics are picking up the conversation (with sibilant frequencies dialled down maybe). You control the balance between inside and outside.

That’s kind of what I was thinking. I don’t have your condition, so that might be laughable. Anyway…

I thought Nuheara mailed everywhere