Different Types of Hyperacusis?

[vermillion]

I am a bit confused. Correct me if I got it right:

Sounds perceived louder: Loudness hyperacusis.
Sounds produce ear pain: Noxacusis.
Sounds provokes extra tinnitus sounds / distorted sound (eg. hearing morse beeps over tap running water): Dysacusis.
Sounds aggravates tinnitus: Reactive tinnitus (which is still really vague).

I read a lot about sound sensitivity. How does everybody experience that? Is that loundness hyperacusis? What exactly do you feel?

I would like to get some insight on the following: Almost every sound such as phone calls, steps, voices, especially high pitch sounds like cutlery clinging, turning of pages etc make my ears vibrating. It's like a whooshing sound / sensation inside my ear. Like when you have water in the ear. I mean it's completely physical. Something is moving inside. And this is happening mostly as an after effect / response to the mentioned sounds. I had that really mild before, but 3 weeks ago it has gone a lot worse and it's extremely uncomfortable. Does anybody have this?

I would like to read from others how they experience hyperacusis/sound sensitivity. I do also get distortions which are also a lot worse now.

 

[Juan]

I had that really mild before, but 3 weeks ago it has gone a lot worse and it's extremely uncomfortable. Does anybody have this?

I have that sometimes, but I cannot pin down the exact cause, so I just assumed it is one of the set of symptoms derived from hyperacusis.

 

[vermillion]

I have that sometimes

So for you it comes and goes?

 

[Nobody19]

It's likely Tonic Tensor Tympani Syndrome

It involves a decrease in the contraction threshold of the tensor tympani. This hypercontraction (or spasms) leads to chronic ear pain, in particular in the case of hyperacusis [3] and acoustic shock.[4]

https://en.wikipedia.org/wiki/Tonic_tensor_tympani_syndrome

 

[vermillion]

It's likely Tonic Tensor Tympani Syndrome

Is there a way to recover from this?
What's the reason?
How should I proceed?
Any other people here with this?

 

[Juan]

So for you it comes and goes?

Yes, it comes and goes.

 

[vermillion]

Yes, it comes and goes.

At least you get some relief.
Mine is constant.

 

[Nobody19]

Is there a way to recover from this?
What's the reason?
How should I proceed?
Any other people here with this?

Mine improved over time, but it's been 11 months and it isn't gone. Avoiding loud noises is what works for me.

There is a clinic in Belgium that offers a treatment, but I haven't read any experiences with it.

 

[vermillion]

Mine improved over time, but it's been 11 months and it isn't gone. Avoiding loud noises is what works for me.

I had been following this strategy too, due to my sever tinnitus. But my TTTS was pretty mild with fluctuations. This new condition / level ironically began while I was in a pretty quiet environment. I am completely baffled.

 

[xyz]

I would like to get some insight on the following: Almost every sound such as phone calls, steps, voices, especially high pitch sounds like cutlery clinging, turning of pages etc make my ears vibrating. It's like a whooshing sound / sensation inside my ear. Like when you have water in the ear. I mean it's completely physical. Something is moving inside. And this is happening mostly as an after effect / response to the mentioned sounds.

I have eardrum fluttering when someone speaks to me. It sounds like a sail in the wind. I have noticed this also only first as I was in a quiet environment. I am now overprotecting wearing earmuffs nearly 24/7 even at home and it seems slightly to improve.

 

[vermillion]

I have eardrum fluttering when someone speaks to me. It sounds like a sail in the wind. I have noticed this also only first as I was in a quiet environment. I am now overprotecting wearing earmuffs nearly 24/7 even at home and it seems slightly to improve.

I have started to wear muffs in the house too. I really can't imagine how to keep on. Even if it gets better, it means that with the slightest normal sound I will regress. It's pretty intense. Even turning book pages is uncomfortable! God help us. (Sorry he won't)

 

[xyz]

I have started to wear muffs in the house too. I really can't imagine how to keep on. Even if it gets better, it means that with the slightest normal sound I will regress. It's pretty intense. Even turning book pages is uncomfortable! God help us. (Sorry he won't)

I hope FX-322 will do the job. In the meantime I try to rescue the ear health I have with protection, Magnesium, NAC... until some treatment comes available.

 

[serendipity1996]

I hope FX-322 will do the job. In the meantime I try to rescue the ear health I have with protection, Magnesium, NAC... until some treatment comes available.

I hope so too. That and the new Retigabine... it seems encouraging given that people reported significant relief with the discontinued version which of course was even less selective and potent... and we know that Retigabine silences the type 2 nerve fibers causing pain well at least in an ex vivo rodent model.

In the meantime, I'm hoping my hyperacusis continues to improve so I can regain normalcy... at least then I could hold on until some treatment comes in the medium-to-longer term.

 

[xyz]

I hope so too. That and the new Retigabine... it seems encouraging given that people reported significant relief with the discontinued version which of course was even less selective and potent... and we know that Retigabine silences the type 2 nerve fibers causing pain well at least in an ex vivo rodent model.

In the meantime, I'm hoping my hyperacusis continues to improve so I can regain normalcy... at least then I could hold on until some treatment comes in the medium-to-longer term.

Yes, somewhere I read that when Retigabine would be administered directly to the inner ear (probably in some fashion like FX-322) this could reduce the side effects of it that it has when it is taken orally and still be effective for pain hyperacusis. However I hope that someone is really testing this out and that it is not left as some research hypothesis.

 

[vermillion]

Yes, somewhere I read that when Retigabine would be administered directly to the inner ear (probably in some fashion like FX-322) this could reduce the side effects of it that it has when it is taken orally and still be effective for pain hyperacusis. However I hope that someone is really testing this out and that it is not left as some research hypothesis.

But would Retigabine administered directly to the inner ear be sufficient? I thought that this drug calmed down firing of neurons that also involve other parts of the brain.

 

[vermillion]

I'm hoping my hyperacusis continues to improve

What kind of hyperacusis and how did you acquire it? Are you following a specific strategy?

 

[xyz]

But would Retigabine administered directly to the inner ear be sufficient? I thought that this drug calmed down firing of neurons that also involve other parts of the brain.

This was in some hyperacusis research report:

https://www.tinnitustalk.com/thread...ives-2-million-grant.32693/page-5#post-523516

 

[vermillion]

This was in some hyperacusis research report:

https://www.tinnitustalk.com/thread...ives-2-million-grant.32693/page-5#post-523516

This is really interesting. I am tired with the fact that ALL of these possible approaches are not available even in an experimental state. The way that this world functions is a sick irony. Big time. I mean it's legal to establish a gun/warfare industry to kill people and sustain wars, but it's impossible to have access to experimental treatments just because it might be harmful to you? Why don't I have the right to become a guinea pig? Bring me the papers and I can sign that I won't sue anybody in case things go wrong.

 

[xyz]

This is really interesting. I am tired with the fact that ALL of these possible approaches are not available even in an experimental state. The way that this world functions is a sick irony. Big time. I mean it's legal to establish a gun/warfare industry to kill people and sustain wars, but it's impossible to have access to experimental treatments just because it might be harmful to you? Why don't I have the right to become a guinea pig? Bring me the papers and I can sign that I won't sue anybody in case things go wrong.

Yes, totally agree. I think they should start selling Trobalt again for severe cases of tinnitus & pain hyperacusis. And administer it under close medical surveillance. This is better than the 9mm option and there is just nothing else.

 

[serendipity1996]

What kind of hyperacusis and how did you acquire it? Are you following a specific strategy?

Pain hyperacusis - it's definitely improved a lot but I still have lingering symptoms that come and go. Mostly I am just trying to limit my exposure to anything excessively loud.

 

[vermillion]

Yes, totally agree. I think they should start selling Trobalt again for severe cases of tinnitus & pain hyperacusis. And administer it under close medical surveillance. This is better than the 9mm option and there is just nothing else.

If only Trobalt didn't go along with all those nasty side effects... our lives would be better now I guess.

 

[vermillion]

Pain hyperacusis - it's definitely improved a lot but I still have lingering symptoms that come and go. Mostly I am just trying to limit my exposure to anything excessively loud.

Glad to hear you are better.

 

[ASilverLight]

I'm still pretty confused. I don't have any typical hyperacusis symptoms. I can stand sounds just fine, normal every day life noise doesn't hurt or sound louder at all. Nothing gives me a wooshing or vibrating sensation, especially not normal noise. I had some ear fullness at the same time fluid was present but haven't had this feeling in weeks now and my ears are now clear.

But I do occasionally get a thumping - this either happens in silence when I'm in bed OR with very specific repetitive noises, but not always.

I can recall the thumping happening way (YEARS) before I got tinnitus, and it's only occasional. A repetitive noise can cause it one moment, but not the next. Even if it's the exact same noise.

I also don't have ANY symptoms of TTTS aside from tinnitus.

So I'm a bit confused lol.

 

[xyz]

If only Trobalt didn't go along with all those nasty side effects... our lives would be better now I guess.

Yes, unfortunately to tackle this beast the big ammo is required. Certainly would be better if NAC alone would do the job.

 

[vermillion]

Yes, unfortunately to tackle this beast the big ammo is required. Certainly would be better if NAC alone would do the job.

But NAC has no effect on alleviating the symptoms. It doesn't have any value as a cure. Only preventative which is questionable I guess.

 

[vermillion]

So I'm a bit confused lol.

Since you don't have hyperacusis, just don't bother. You are lucky!

 

[Orions Pain]

I know exactly what you mean by the little vibration sensation with sounds.

I don't think it's necessarily TTTS because at some point in my hyperacusis journey I straight up had ear spasms, like my ear would thump in patterns of 3-4 thumps every few minutes.

In my case my hyperacusis started out as loudness. It wasn't to everything but suddenly voices started being way too loud. I could hardly listen to my coworkers talk to me. It didn't cause "pain" but almost like a terrible pressure in my head and I just wanted to turn the volume down.

I still have this. On top of that I have random burning deep in my ear, but a weird cold burn rather than hot burn.

I also have reactive tinnitus. If I spend too long in a noisy environment I develop a new tone which goes away (I have 5 baseline tinnitus tones that fluctuate in volume daily besides that)

And I also have this weird sensation that when there are external sounds like a fridge whining, heating unit, distant lawn mowers, etc, I hear an extra whistling tone over it. Like a whirly tube sound and it makes my ear super uncomfortable.

I haven't done anything loud since this started for me last November yet it seems to be getting worse. I can't wear ear plugs to stores anymore because they burn my ears.

I also developed visual snow.

Yeah, life sucks.

 

[vermillion]

I know exactly what you mean by the little vibration sensation with sounds.

I don't think it's necessarily TTTS because at some point in my hyperacusis journey I straight up had ear spasms, like my ear would thump in patterns of 3-4 thumps every few minutes.

In my case my hyperacusis started out as loudness. It wasn't to everything but suddenly voices started being way too loud. I could hardly listen to my coworkers talk to me. It didn't cause "pain" but almost like a terrible pressure in my head and I just wanted to turn the volume down.

I still have this. On top of that I have random burning deep in my ear, but a weird cold burn rather than hot burn.

I also have reactive tinnitus. If I spend too long in a noisy environment I develop a new tone which goes away (I have 5 baseline tinnitus tones that fluctuate in volume daily besides that)

And I also have this weird sensation that when there are external sounds like a fridge whining, heating unit, distant lawn mowers, etc, I hear an extra whistling tone over it. Like a whirly tube sound and it makes my ear super uncomfortable.

I haven't done anything loud since this started for me last November yet it seems to be getting worse. I can't wear ear plugs to stores anymore because they burn my ears.

I also developed visual snow.

Yeah, life sucks.

Hello @Orions Pain.

You describe almost my tinnitus. Almost. We have almost identical symptoms. I am really sorry to hear that. If you want we could connect. I try to find people that I can relate with mostly to see how they cope and if they have managed to establish a strategy. I am really interested to hear whether you are still able to work.
Thank you for taking the time to reply extensively. I appreciate that.

I also have VS

 

[ASilverLight]

Since you don't have hyperacusis, just don't bother. You are lucky!

Oh I know, I'm just wondering whether it could be another form or symptom of hyperacusis. I also find it strange to have such severe/fluctuating tinnitus with no hyperacusis present... but maybe that just means mine isn't noise induced since it seems to be so common.

My deepest sympathies to all of you hyperacusis sufferers though. Intrusive tinnitus is bad enough to me, cannot imagine what it's like to be so sensitive to sound.

 

[vermillion]

cannot imagine what it's like to be so sensitive to sound.

You don't want to know!
Hell on earth.