Does Hearing Loss Ever "Kick In" for Loudness Hyperacusis?

[Zugzug]

Most people know my story so I won't rehash it here. My disease has caused by LDLs to drop progressively. After 20 months, my LDLs are in the 10-20's; I can't take off earmuffs, talk, or leave my house. I have very severe loudness hyperacusis. Not only is every sound (no matter how small) greatly amped up in volume, but my brain reacts to noise with extreme agitation, anger, etc. A pencil falling off my desk is like a gunshot going off. I also have bad tinnitus that's constant and also reacts.

My thought is that I doubt the disease will stop anytime soon. But there has to be a point where the hyperacusis becomes less, right? In other words, right now, my brain can make out some hearing signal so it amps it up. Eventually, what if a signal stops reaching my brain?

It doesn't seem like I'm close to this point though. When I listen to music at a barely audible level, it's excruciating, but I can still make out the melodies and my ability to listen to lyrics seems similar to before hyperacusis. High pitch noises are the worst.

I fully subscribe to the theory that loudness hyperacusis is hidden hearing loss. I wonder if anyone else has seen a breaking point where it becomes hearing loss instead. If anyone has experience with this, please let me know. Thanks.

 

[Aaron91]

Very sorry to hear what you're going through Zugzug, I know you're fighting other health issues as well.

I'm 9 months in and although I've seen a small improvement in still waiting for some kind of breakthrough change because my life is similarly compromised although perhaps not as bad as yours. Very much housebound though. I have noticed over the last two months that I've been getting a lot of random and new tinnitus tones that last a few seconds then disappear. It has made me wonder whether there are hair cells dying off. In a perverse way they've sometimes got me excited (once they've disappeared) because it's made me wonder if my hyperacusis will soon resolve but nothing yet to note. This is also about the time that inflammation starts to go down in rodents that suffer acoustic trauma but we don't know yet if that's translatable to humans.

 

[twa]

I'm not sure if it is my reaction that is different or that I am getting better, but I can tolerate more sounds now than in the beginning. I think the hyperacusis has been very difficult emotionally. I have wondered if my sound sensitivity was caused by anxiety, but concluded that it is more than psychological. It has been 4 months since my acoustic trauma give or take. I've been on a pretty strict anti-inflammatory protocol which I think has helped. I did attend church for the first time since my acoustic trauma. It was hard to sit in listen, I worried about the noise level but I made it about 30-40 minutes with ear plugs and checking the decibels.

 

[Juan]

Most people know my story so I won't rehash it here. My disease has caused by LDLs to drop progressively. After 20 months, my LDLs are in the 10-20's; I can't take off earmuffs, talk, or leave my house. I have very severe loudness hyperacusis. Not only is every sound (no matter how small) greatly amped up in volume, but my brain reacts to noise with extreme agitation, anger, etc. A pencil falling off my desk is like a gunshot going off. I also have bad tinnitus that's constant and also reacts.

My thought is that I doubt the disease will stop anytime soon. But there has to be a point where the hyperacusis becomes less, right? In other words, right now, my brain can make out some hearing signal so it amps it up. Eventually, what if a signal stops reaching my brain?

It doesn't seem like I'm close to this point though. When I listen to music at a barely audible level, it's excruciating, but I can still make out the melodies and my ability to listen to lyrics seems similar to before hyperacusis. High pitch noises are the worst.

I fully subscribe to the theory that loudness hyperacusis is hidden hearing loss. I wonder if anyone else has seen a breaking point where it becomes hearing loss instead. If anyone has experience with this, please let me know. Thanks.

Hi Zugzug, I am sorry things are getting worse, in terms of LDLs getting lower. In my case, my hyperacusis diminished as hearing loss progressed.

 

[Sevv]

Hi Zugzug, I am sorry things are getting worse, in terms of LDLs getting lower. In my case, my hyperacusis diminished as hearing loss progressed.

I wonder what happens to loudness and pain hyperacusis if you made yourself deaf. Although it has a high potential of worsening tinnitus and no more masking obviously.

 

[aot]

I wonder what happens to loudness and pain hyperacusis if you made yourself deaf. Although it has a high potential of worsening tinnitus and no more masking obviously.

I vaguely recall reading an article somewhere that lab mice with hyperacusis were deafened, but they still had hyperacusis afterwards. Not sure if it was loudness hyperacusis or pain hyperacusis though, and it's entirely possible that it might be different in humans.

 

[Zugzug]

Hi Zugzug, I am sorry things are getting worse, in terms of LDLs getting lower. In my case, my hyperacusis diminished as hearing loss progressed.

Was it at the lowest point of your LDLs when it happened? i.e. hyperacusis reached a limit and hearing loss set in.

 

[__nico__]

I vaguely recall reading an article somewhere that lab mice with hyperacusis were deafened, but they still had hyperacusis afterwards. Not sure if it was loudness hyperacusis or pain hyperacusis though, and it's entirely possible that it might be different in humans.

They had pain hyperacusis. This would not be possible with loudness hyperacusis.

 

[Shizune]

I would like to know the same thing. My LDLs are dropping rapidly and I'm only 7 months in. I don't know how much more I can take.

I don't know if I've seen you say this information on your situation before, but how was your hearing prior to getting hyperacusis? I never got tested but I always considered myself somewhat hard of hearing prior to hyperacusis (needed things all the way up to hear anything, always used subtitles, issues with understanding speech in noise). It's very strange to have the opposite issue now. I also pray for eventual loss to make up for this hell.

I'm hoping the theory for us loudness H folks is true so we can have a chance with FX-322.

(Also I think that mice study was for noxacusis mice, but would need to double check).

 

[Sevv]

They had pain hyperacusis. This would not be possible with loudness hyperacusis.

Anything else would be illogical, as loudness hyperacusis is an over-amplified signal, so there has to be a signal in the first place. So if those mice were deaf, in order for noxacusis to continue, there would have to be other nerve cells that can pick up vibration. Maybe it is type-II afferent neurons, depending on how the mice were deafened (if the whole cochlea is destroyed, type-II afferent neurons should be dead as well, so no more signal from them as well).

 

[Juan]

Was it at the lowest point of your LDLs when it happened? i.e. hyperacusis reached a limit and hearing loss set in.

No. My LDLs recovered a little from severe hyperacusis (around 40 - 50 dB across all frequencies) to the typical 80 dB of chronic moderate hyperacusis, still bad hyperacusis taking into account that loud sound would cut through my head and was actually "felt" through earplugs and earmuffs (these episodes, repeated over time triggered my hearing loss).

So I got hearing loss even when I was careful enough to wear protection against the odd single loud sound at most times. It took years, but now I cannot really say I hear well. I have trouble with TV and understanding speech in noisy situations.

I have just taken things as they came.. did not really found any way back to my pre-hyperacusic ears, with excellent hearing and absolutely no issues with loud sound.

 

[Juan]

I wonder what happens to loudness and pain hyperacusis if you made yourself deaf. Although it has a high potential of worsening tinnitus and no more masking obviously.

I think it is best for your hearing to progress naturally to whatever is prone to do. In my case the hearing loss has progressed slowly over many years. I tried to avoid this as much as I could, but things just happen, noise happen, there are loud sounds everywhere, and for me hearing protection was not enough to avoid damage, due to hyperacusic ears that amplified sound so much, even through double protection.

 

[Zugzug]

No. My LDLs recovered a little from severe hyperacusis (around 40 - 50 dB across all frequencies) to the typical 80 dB of chronic moderate hyperacusis, still bad hyperacusis taking into account that loud sound would cut through my head and was actually "felt" through earplugs and earmuffs (these episodes, repeated over time triggered my hearing loss).

So I got hearing loss even when I was careful enough to wear protection against the odd single loud sound at most times. It took years, but now I cannot really say I hear well. I have trouble with TV and understanding speech in noisy situations.

I have just taken things as they came.. did not really found any way back to my pre-hyperacusic ears, with excellent hearing and absolutely no issues with loud sound.

I'm sorry to hear about your hearing. I find it interesting that your hearing loss set in when your LDLs were not at their all time low.

I completely agree about hearing protection. People without hyperacusis think that putting on earmuffs is like blocking out the world. It's not at all for people with hyperacusis. It feels like just a thin layer of protection.

Hopefully, FX-322 can help.

 

[Juan]

I'm sorry to hear about your hearing. I find it interesting that your hearing loss set in when your LDLs were not at their all time low.

After my LDLs improved from their all time low there were some years in which I could hear quite well, almost as before, but loud sound cut through the hearing protection and was perceived unusually loud, so there was clearly something wrong there. I could be going for a walk and talking to someone, and hearing them talk back to me, through earplugs and earmuffs, even with my back turned to them. Of course the odd loud sound killed me even wearing double protection.

This triggered hearing loss, which was progressive, quite slow, but at the same time incidental, meaning that damage was done on individual exposures to noise, maybe some brief sound one day, a car horn another, a siren on a different day, and so on, over the years.

During the process there were lasting setbacks, landmarks that defined and new and lower quality of sound perception, usually involving very loud sounds (sounds that would bother normal people, like construction around, very loud noises from traffic etc). There was also a recurring symptom, which never really worried me: a sudden fall of hearing in one of my ears, which means I would hear nothing, zero sound, for like a second, and then hear tinnitus, and afterwards things came back to baseline and I would hear normally again. This happened typically with my left ear, and after many years it has happened a few times with my right ear in 2020.

In terms of hearing quality, one of the first issues I had, and this was in the early days of severe hyperacusis, is I would find it harder to locate the source and direction of sound. However, I would be able to focus, identify and answer to speech from several sources (in a group conversation, or I could watch TV and talk to someone, and hear both TV and that person). I also could hear to TV set on low volume, wearing earmuffs. Fast forward some years and I was able to use headphone, on low volume, and was able to listen to a song on headphones, turn on TV, and both hear and identify speech from the song and TV at the same time.

When hearing started really deteriorating, and getting much worse in terms of quality, sounds started merging and overlapping, and my hearing wasn't able to layer sounds anymore, or focus on them individually when sounds were overlapping (I could do this before, the TV and headphones experience is an example).

So basically bad hearing is like bad sight, like not being able to perceive the signal sharply, acutely... everything merges into a cacophony. Now I realise that some of the worst settings for people with hearing loss include places with echo and reverberation, and places where there is background noise that has a component of distortion.

 

[aot]

There was also a recurring symptom, which never really worried me: a sudden fall of hearing in one of my ears, which means I would hear nothing, zero sound, for like a second, and then hear tinnitus, and afterwards things came back to baseline and I would hear normally again

Wow, I have the same thing! In the left ear as well. But it only happens when I scratch or rub it. My ear's been doing this for years and I've never given it any thought.

 

[Brian Newman]

After my LDLs improved from their all time low there were some years in which I could hear quite well, almost as before, but loud sound cut through the hearing protection and was perceived unusually loud, so there was clearly something wrong there. I could be going for a walk and talking to someone, and hearing them talk back to me, through earplugs and earmuffs, even with my back turned to them. Of course the odd loud sound killed me even wearing double protection.

This triggered hearing loss, which was progressive, quite slow, but at the same time incidental, meaning that damage was done on individual exposures to noise, maybe some brief sound one day, a car horn another, a siren on a different day, and so on, over the years.

During the process there were lasting setbacks, landmarks that defined and new and lower quality of sound perception, usually involving very loud sounds (sounds that would bother normal people, like construction around, very loud noises from traffic etc). There was also a recurring symptom, which never really worried me: a sudden fall of hearing in one of my ears, which means I would hear nothing, zero sound, for like a second, and then hear tinnitus, and afterwards things came back to baseline and I would hear normally again. This happened typically with my left ear, and after many years it has happened a few times with my right ear in 2020.

In terms of hearing quality, one of the first issues I had, and this was in the early days of severe hyperacusis, is I would find it harder to locate the source and direction of sound. However, I would be able to focus, identify and answer to speech from several sources (in a group conversation, or I could watch TV and talk to someone, and hear both TV and that person). I also could hear to TV set on low volume, wearing earmuffs. Fast forward some years and I was able to use headphone, on low volume, and was able to listen to a song on headphones, turn on TV, and both hear and identify speech from the song and TV at the same time.

When hearing started really deteriorating, and getting much worse in terms of quality, sounds started merging and overlapping, and my hearing wasn't able to layer sounds anymore, or focus on them individually when sounds were overlapping (I could do this before, the TV and headphones experience is an example).

So basically bad hearing is like bad sight, like not being able to perceive the signal sharply, acutely... everything merges into a cacophony. Now I realise that some of the worst settings for people with hearing loss include places with echo and reverberation, and places where there is background noise that has a component of distortion.

Very interesting. After my ear trauma, 4-6 months later, I would lose hearing just like you, hearing loud tinnitus, then get my hearing back and the tinnitus would go back to baseline after a few minutes. It happens to me sometimes now but I am extremely careful with loud noise. This is 4 years after the onset, I ended up taking Prednisone a week ago and it happened every day, but I also think I had swelling and that's what happens when some of the swelling goes down or pressure gets taken off a nerve.

 

[Juan]

Very interesting. After my ear trauma, 4-6 months later, I would lose hearing just like you, hearing loud tinnitus, then get my hearing back and the tinnitus would go back to baseline after a few minutes. It happens to me sometimes now but I am extremely careful with loud noise. This is 4 years after the onset, I ended up taking Prednisone a week ago and it happened every day, but I also think I had swelling and that's what happens when some of the swelling goes down or pressure gets taken off a nerve.

In my first years with hyperacusis my hearing would go up and down in cycles. My hearing felt muffled, and the ears had that dull, pressure feeling to them after I was incidentally exposed to noise. After a week or two my hearing would get back to baseline and be balanced again. All this precarious equilibrium was lost when I was incidentally exposed to one-off noises that were loud enough to make lasting damage (to my hyperacusic ears), and that's when hearing loss started.

Even being really really careful, using hearing protection etc it was just impossible for me to avoid noise related damage, due to my debilitated, hyperacusic ears. That's why many people say it's like a "noise filter" has been removed from our ears when one develops hyperacusis; there is no longer tolerance to sound.