Are There Severe Hyperacusis Cases Who Haven't Posted Success Stories?

[Zugzug]

@Zugzug

Don't know how to do the quote thing. Your comment... "at least I could breath, exercise, go for walks,.... " touched my heart. I'm sorry you are unable to go for walks.

It's definitely not the same, but here is a photo where one can take an imaginary walk. A computer file of images such as this, with lakes, mountains, streams, cabins in the woods, night skies, etc.... may not be the same as the real thing but may bring some comfort. I know it does for me.

View attachment 39916

LindaS, that's so sweet of you. I'm having a hard time with outlook right now. I haven't found one success story that resembles my problem (in terms of presentation) so viewing certain things can be bitter sweet. Nature is beautiful, and in fact, the last trip I took with my parents was in nature. I feel like I've died and every day I'm seeing things that I'll never experience again. Nature is probably something I'll be able to experience again, but other things I'm not sure.

 

[lymebite]

@Zugzug curious if you've done any tests for autoimmune?

Earlier this year my ENT recommended I investigate autoimmune disorder as a possible underlying cause since my severe hyperacusis has persisted so long without improvement (over 5 years in a severe state) and my hearing threshold tests fluctuate beyond the normal variability range. So I went to the immunologist the ENT referred me to, and did two blood tests, one for inner autoimmune inner ear disease (AIED) and one for Sjogrens. Both came up negative, though my understanding is that the AIED blood test is not fully definitive.

 

[GregCA]

For the love of the universe, I wish my hyperacusis transitioned into hearing loss. Of course, this too is exceptionally depressing -- I don't want to sound like I'm glamorizing it. Both are tragic. But right now, I can't move, leave my house, take my earplugs/earmuffs off, converse, drive, go for walks, or really do anything at all. Typing this message is difficult.

I'm sympathetic. I used to be unable to type on my laptop's keyboard because it would hurt my ears. Same with crumpling paper and other low volume sounds.

This went 99% away after I had my stapedotomy. I still have some H in some circumstances but it's very manageable.

Good luck to you. Hang in there.

 

[Zugzug]

@Zugzug curious if you've done any tests for autoimmune?

Earlier this year my ENT recommended I investigate autoimmune since my severe hyperacusis has persisted so long without improvement (over 5 years in a severe state) and my hearing threshold tests fluctuate beyond the normal variability range. So I went to the immunologist the ENT referred me to, and did two blood tests, one for inner autoimmune inner ear disease (AIED) and one for Sjogrens. Both came up negative.

This is precisely where I'm at. I actually have a whole backstory of autoimmune symptoms for the past 5 years. Sjogren's syndrome is suspected to be the main driver. I have one positive blood marker, but my rheumatologist wants me to get a lip biopsy before we go nuts with immunosuppressants. Unfortunately, my H is so severe right now that I can't get in the car.

AIED is something you can't really test for. The blood test is highly dubious, with many false positives and negatives. I may be one of the "lucky" ones in that I could get diagnosed as being part of a systemic disease. We will see.

 

[Zugzug]

I'm sympathetic. I used to be unable to type on my laptop's keyboard because it would hurt my ears. Same with crumpling paper and other low volume sounds.

This went 99% away after I had my stapedotomy. I still have some H in some circumstances but it's very manageable.

Good luck to you. Hang in there.

I'm happy to see yours improved. I'm interested that you say your "ears," as in plural. Isn't otoslerosis usually unilateral?

 

[GregCA]

I'm happy to see yours improved. I'm interested that you say your "ears," as in plural. Isn't otoslerosis usually unilateral?

Yes, my mistake, I meant to write "ear".

As for otosclerosis, it is usually bi-lateral, but the disease doesn't generally attack both ears at the same time: there is a lag between the first and second ear, so patients generally have some amount of time with only one ear being affected.

 

[Zugzug]

Yes, my mistake, I meant to write "ear".

As for otosclerosis, it is usually bi-lateral, but the disease doesn't generally attack both ears at the same time: there is a lag between the first and second ear, so patients generally have some amount of time with only one ear being affected.

Very interesting. This is not a theory I have looked at closely since my tympanometry and middle ear test was normal. Plus, my hearing problems came on super suddenly. I read that autoimmunity can be at play with this disorder, which would align with my other symptoms for the past 5 years.

Was your tympanometry normal? Did it come on gradually?

 

[Kriszti]

I'm sympathetic. I used to be unable to type on my laptop's keyboard because it would hurt my ears. Same with crumpling paper and other low volume sounds.

This went 99% away after I had my stapedotomy. I still have some H in some circumstances but it's very manageable.

Good luck to you. Hang in there.

What is the suspected mechanism behind otosclerosis causing pain hyperacusis? Is it connected somehow to stapedius reflex? And how does surgery help with it?

I know that the surgery didn't solve the tinnitus, but I'm so glad that it lessened this much your hyperacusis.

 

[GregCA]

Was your tympanometry normal?

Nope. It wasn't. I was missing my stapedial reflex in the affected ear. The doctor, of course, didn't mention it. I only figured it out later as I became more educated about this condition.

Did it come on gradually?

No, it came on suddenly. What typically takes years/decades took just 6-8 weeks for me. No doctor has been able to explain it.

What is the suspected mechanism behind otosclerosis causing pain hyperacusis? Is it connected somehow to stapedius reflex? And how does surgery help with it?

I don't know the answer to that, but clearly there was a strong causality. The surgery restored the lost mobility for the whole ossicular chain, so I assume my H was related to the "stuck in the mud" characteristics of my ossicular chain pre-op.

 

[Kriszti]

Nope. It wasn't. I was missing my stapedial reflex in the affected ear. The doctor, of course, didn't mention it. I only figured it out later as I became more educated about this condition.

Same-ish for me. My tympanogram is really shallow, and my stapedial reflex is irregular. According to the - otherwise very rude - audiologist doctor, no problem though. She didn't say a world about it not being normal. After COVID-19 regulations (and my own life problems) next week I'm going to an audiology again to have a PTA.

This is not a theory I have looked at closely since my tympanometry and middle ear test was normal. Plus, my hearing problems came on super suddenly

I read that you can have otosclerosis with normal tympanometry, but it's rare. Irregular tympanometry is more common. The ENT I saw last week said the same as Greg, that it affects both ears, but it's not typical to have bilateral tinnitus with it. Also, hyperacusis is also not a typical symptom for otosclerosis as far as I know.

 

[Zugzug]

@GregCA :

Since you are the expert, do any of these numbers look high to you? This test was performed a long time ago, when my hyperacusis wasn't even remotely this bad.

 

[GregCA]

@GregCA :

Since you are the expert, do any of these numbers look high to you? This test was performed a long time ago, when my hyperacusis wasn't even remotely this bad.

Sorry I don't know what that table shows. I've seen many different reports templates from audiologists. Is that the result of the loudness tests? or is that simple PTA? (it doesn't look like that - it's usually a graph). Sometimes Air-Bone Gaps are shown in a table as well.

Can you scan the whole page?

 

[Michael Leigh]

hyperacusis is also not a typical symptom for otosclerosis as far as I know.

@Kriszti

You are correct Kriszi. The most common type of hyperacusis whether it is experienced with pain or not is caused by exposure to loud noise and a person develops tinnitus from it. There is another type of hyperacusis known as vestibular hyperacusis. This is where the sound can cause a person to fall, lose balance or experience dizziness and will probably require professional help.

Hyperacusis caused by exposure to loud noise I have written about in my post: Hyperacusis, As I see it, in the link below. People whose tinnitus is not noise induced and say they have hyperacusis I do not believe this is the case. They may have an oversensitivity to sound with or without pain but it is probably caused by another problem within the auditory system.

Hyperacusis caused by exposure to loud noise often improves with time. In some cases professional help is required wearing white noise generators. This treatment needs to be under the guidance of a Hearing Therapist or Audiologist, trained in the treatment and management of tinnitus and hyperacusis. This can take up to 2 years and regular counselling is usually required.

Michael

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

[Ava Lugo]

@Zugzug

Don't know how to do the quote thing. Your comment... "at least I could breath, exercise, go for walks,.... " touched my heart. I'm sorry you are unable to go for walks.

It's definitely not the same, but here is a photo where one can take an imaginary walk. A computer file of images such as this, with lakes, mountains, streams, cabins in the woods, night skies, etc.... may not be the same as the real thing but may bring some comfort. I know it does for me.

View attachment 39916

Google Street View is another good way to take an imaginary walk. I browse places like Switzerland and Austria a lot.

 

[Outlaw]

It was exactly like that for me too. Actually years back I though that, in worst case scenario (see, I'm optimistic!), I would settle for mild hearing loss, meaning having trouble understanding people but still able to work. The trade off would be no earplugs and no worries. This was all in my mind of course... now I still use earplugs, although a bit less. With earplugs I understand more or less what people are saying. In a supermarket I understand the cashier, because the cashier really is yelling over supermarket music and the general noise around. In a quiet home, with earplugs of course I cannot hear TV at all (at normal volume) and if someone talks to me, I barely get what they are saying..

So I got the hearing loss, but not the benefits of an earplug-free life....

They can't be super damaged because you wouldn't hear. Most likely the is slight damage but today doctors don't know how to fix it, and your hearing system is amplifying.

I thought about that myself as well. I ruled it out because in theory a demyelinating disease would spread to other parts of the body, and hearing would be our least concern... I think ELA is demyelinating...

Sorry to bring back an old thread, but this spiked my curiosity.

I got hyperacusis from Post Finasteride Syndrome, which has been hypotethized to be cause by a form of gene methyaliation. I have dozen of other symptoms from this disease. Is it possible it caused hyperacusis through demethylation?

 

[Juan]

I got hyperacusis from Post Finasteride Syndrome, which has been hypotethized to be cause by a form of gene methyaliation. I have dozen of other symptoms from this disease. Is it possible it caused hyperacusis through demethylation?

So sorry this is happening to you. I did not know what Post Finasteride Syndrome was, so I looked it up. Wikipedia mentions "neurological effects" but it does not mention specifically hyperacusis or other hearing problems.

I am not sure what "demethylation" is.

Anyway, there is a neurological component in speech processing.

 

[Vassili]

My pain hyperacusis is almost gone after two years. Tinnitus is still with me.