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Finally a diagnostic for my strange hearing loss

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Hi everyone!

I struggle for over a year with hearing loss that was not detected in any of the hearing tests i’ve made. My hearing is distorted and became more distorted over time. I have tinnitus and reactive tinnitus besides distortions.
Finally a doctor found what is wrong with me . I have what is called Dysacusis ( hearing impairment characterized by difficulty in processing details of sound due to distortion in frequency or intensity rather than primarily a loss of the ability to perceive sound.) i took the definition i found online to describe it as correct as possible. Everything sounds shrilled and metallic regardless of volume or proximity.
I just wanted to give an update on my situation here. Hearing aids can not help people like me. I am not used to it and still it’s getting worse. Thank you to everyone who encouraged me here and tried to help out! I am truly grateful.

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Thanks for sharing!

Did the doc said if it was a cochlea damage or nerve damage?

If it’s only cochlea, cochlear implant can bypass that, but yeah, you need to have poor word recognition score to be a candidate.

I hear distorted, and I’m currently at 70 wrs, was 60 several months ago, so I guess with me starting to utilise all help available and doing streaming, my brain learned a bit how to get a bit more out of it. And I decided I’ll keep pushing it.

But yes, no aid in the world can remove that. Took me several months to figure that one out, because it seems its not common since no one from pros I’ve spoken with had any clue about it.

Thanks once again for sharing this, now I know the term as well :slight_smile:

Did doc do some special tests to confirm that?
I was suspecting dead regions in cochlea doing that in my case, but could not get a test for my frequencies, the device at doc"s didn’t go below 1khz :confused:

Hi Blacky!

Dysacusis doesn’t have any specific tests that will help to diagnose it, as of now. The fact that all my hearing tests scored that good but my symptoms were far from good, is what lead my doctor to this diagnosis. Well, plus anything i described related to my symptoms. I have crackling with aural fullness. I maintain excelent word recognition. Many doctors thought this must be but did not really explain the distortions.
The last doctor knew, he had other patients like me before with these exact symptoms.
You are very right! It’s a rare form of hearing loss sometimes it appears together with Hyperacusis or frequency loss.
I will add here that my high frequencies worsened a bit but this does not show on hearing tests yet, i expect that to change in future.
I did as much research as possible on dysacusis, it’s very hard to understand where exactly in the auditory pathway the damage took place. It can be a combination of nerve and cochlea damage too. I am looking forward to FX-322 and OTO-313. I hope these will help anyone affected by hearing loss.
I am here for any questions and i wish you nothing but improvement with your hearing Blacky! Love the cat photo!

@lastc said:

I am looking forward to FX-322 and OTO-313. I hope these will help anyone affected by hearing loss.

Yeah, me too :slight_smile:
I hope that the one for cochlear hair cells will be able to remove this distortion. But who knows what future brings.

It seems that it hit me with low frequency hearing loss plus tinnitus, because why not :rofl:

A cochlear candidacy testing might answer questions too. These test validate the mechanics in your inner ear to be functioning properly or not. These tests also do more detailed word and sentence understanding. A or scan would also be needed to look at your cochlea nerve.
Good luck.

i had the and and VFT cochlear candidacy, OAES,electrocochleography,,tympanogram,many tests for acoustic reflexes etc. Everything was perfect in every test. There is no real test for distortions maybe in future. Thank you for suggestion!

In reply to @Raudrive

no. it’s always distorted in any situation everything regardless of volume or proximity. it sounds shrilled,scratchy,like a broken speaker. TV, music, phone etc these distortions are not affected by anything. I do not wear hearing aids because in tests my frequencies are good . it’s called dysacusis

I asked because we have a member who has perfect hearing on her . Doctors can not find any issues. Up close in a quiet environment she hears well but at any kind of distance or noise sound distortion happens. With hearing aids properly tuned and using she can hear well again.

Just thinking out loud.

In reply to @Raudrive

i appreciate all the ideas and suggestions Raudrive! it’s very interesting there are other cases like this i wonder if she has hidden hearing loss from what you mentioned . in a quiet enviroment she hears well but distance and other factors do affect the distortions. My hearing remains excellent in background noise except well, it’s distorted. doctors or audiologists do not allow me to even try any hearing aid because of my tests. And the doctor who found what’s wrong said hearing aids will not help… It’s really sad but i wish there was something to help me. I very much appreciate your help!

I have distortion in my left ear.
says nerve damage.
It’s more noticeable with my hearing aids in.

In reply to @lastc

I have something like this. Everything crackles like static or that broken speaker sound. I find that for me this is largely related to vocals. Me speaking and others speaking to me. Also, it is more prevalent with my voice and woman and children and worse with volume. Less severe with men’s voices or low woman’s voices. It is not bad with musical instruments except for percussion instruments like snare drums and cymbals. When I play the piano or clarinet I get very little distortion. Weird. The said it was nerve damage and there was nothing he could do. He did note that treatments like FX-322 were on the horizon and might offer relief. He also said that hearing aids may sometimes make it worse. That is why I cannot wear my hearing aids optimized as too much boost in certain frequencies can increase that crackling and static. I wear resounds because the seems to be best for manually adjusting what I can tolerate using the app. Many Audiologist do not get this. Hearing aids that have sensors and that adjust to your environment automatically do this based on normal hearing loss and tend to fight manual settings that someone like me needs.

@rickus50 said:

Everything crackles like static or that broken speaker sound.

This could be many things.
Sharing your would help us help you.

In reply to @rickus50

Thank you for sharing! We have pretty much the same symptoms. Indeed sounds static,broken speaker. I was very surprised you mentioned the percussion sounds like cymbals,snare drums. I have this since 3 months ago or so.These are especially distorted for me as well along with voices. In my case it doesn’t matter if it’s men or women voices. They are equally distorted.
Doctors in general do not understand these symptoms. My is in the normal limits and my other tests look even better. When i play piano i get tinnitus feedback after each key.
I am really sorry it makes things more complicated with hearing aids clarity for you. It took me 9 doctors to find one who knew what is going on with me. Dysacusis is a form of hyperacusis . I do not know if you’ve been exposed to a noisy enviroment/music but i am pretty sure this is what’s going on. I wish you all the best Rickus!

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