Pain Hyperacusis in Relation to Acoustic Shock & Synapse Disconnection

[100Hz]

I didn't mention the Regain anecdote as a passing wishful thinking comment, there's a specific reason I brought him up again.

The whole point behind this thread was to hypothesize that an acoustic shock causes a physical injury that does not heal naturally and leads to the underlying spectrum of H symptom severity, and no matter how much the hypothetical damage, or inflammation resulting from it calms down and appears to improve over time, in the end H sufferers generally get over confident and get hurt again and again until they learn to be really careful and hold the inflammation down at all costs, because that damage still exists. I suggest to read the whole thread if you haven't, because its very specific in what its about.

I know that lots of H sufferers generally relapse, learn to be careful, or might even be able to start going to clubs again with ear plugs etc. but I seriously doubt they're cured, not with the typical usual line of offerings and suggestions from ENT's like ginko, magnesium, curcumin+pepper, TRT or any of the other drugs they offer like prednisone, lyrica, neurontin, every type of benzo , xanax, etc. Even just silence and rest. I've tried most of these and see regularly others trying all sorts of drugs. They either just didn't work for me (apart from silence and rest, very occasional prednisone when in real pain) or they had some effect but caused other very negative effects. I know some things work for some people at some level though which is good.

The above supplements and drugs are not cures though, they only alleviate symptoms. Regain was a whole different thing, it proposed to regenerate hair cells and, I believe, please correct me otherwise, reconnect synapses of any hair cells that it did regenerate and I know this anecdote gets thrown around a lot it and can get pretty tiring to hear about, but the only time Ive ever heard of a H sufferer being offered something on a whole different level that could potentially cure the actual acoustic shock damage in his ear was in that anecdote. That's why I think its so significant if its true and is why I'd be interested to know what 'level' of cured he considered himself to be, because it would start to throw some weight behind the theory that something gets physically broken during an acoustic shock that needs proper physical repair.

Regain might have failed because it didn't meet its exact endpoints or whatever but that doesn't mean it didn't fix anyone's hearing and if this guy did go back to touring, and I'm not talking about touring whilst being very careful, wearing earplugs, minor setbacks here and there etc. I'm talking about full on sound levels again plus the confidence that Regain worked and that he knows he's fully recovered then that would be a totally different thing to any kind of recovery I've ever experienced or heard about.

Of course you could suffer a brand new acoustic shock, just like you could suffer a brand new broken leg. That's a very difficult distinction to make though between being either a) appearing to be cured or being actually cured but left susceptible to re-injury, and then relapsing, vs. b) genuinely being cured and suffering a completely independent fresh incident of ear damage. I think I'd know the difference between what I've considered cured to date vs what I believe being truly cured would feel like though.

 

[Lucifer]

I didn't mention the Regain anecdote as a passing wishful thinking comment, there's a specific reason I brought him up again.

The whole point behind this thread was to hypothesize that an acoustic shock causes a physical injury that does not heal naturally and leads to the underlying spectrum of H symptom severity, and no matter how much the hypothetical damage, or inflammation resulting from it calms down and appears to improve over time, in the end H sufferers generally get over confident and get hurt again and again until they learn to be really careful and hold the inflammation down at all costs, because that damage still exists. I suggest to read the whole thread if you haven't, because its very specific in what its about.

I know that lots of H sufferers generally relapse, learn to be careful, or might even be able to start going to clubs again with ear plugs etc. but I seriously doubt they're cured, not with the typical usual line of offerings and suggestions from ENT's like ginko, magnesium, curcumin+pepper, TRT or any of the other drugs they offer like prednisone, lyrica, neurontin, every type of benzo , xanax, etc. Even just silence and rest. I've tried most of these and see regularly others trying all sorts of drugs. They either just didn't work for me (apart from silence and rest, very occasional prednisone when in real pain) or they had some effect but caused other very negative effects. I know some things work for some people at some level though which is good.

The above supplements and drugs are not cures though, they only alleviate symptoms. Regain was a whole different thing, it proposed to regenerate hair cells and, I believe, please correct me otherwise, reconnect synapses of any hair cells that it did regenerate and I know this anecdote gets thrown around a lot it and can get pretty tiring to hear about, but the only time Ive ever heard of a H sufferer being offered something on a whole different level that could potentially cure the actual acoustic shock damage in his ear was in that anecdote. That's why I think its so significant if its true and is why I'd be interested to know what 'level' of cured he considered himself to be, because it would start to throw some weight behind the theory that something gets physically broken during an acoustic shock that needs proper physical repair.

Regain might have failed because it didn't meet its exact endpoints or whatever but that doesn't mean it didn't fix anyone's hearing and if this guy did go back to touring, and I'm not talking about touring whilst being very careful, wearing earplugs, minor setbacks here and there etc. I'm talking about full on sound levels again plus the confidence that Regain worked and that he knows he's fully recovered then that would be a totally different thing to any kind of recovery I've ever experienced or heard about.

Of course you could suffer a brand new acoustic shock, just like you could suffer a brand new broken leg. That's a very difficult distinction to make though between being either a) appearing to be cured or being actually cured but left susceptible to re-injury, and then relapsing, vs. b) genuinely being cured and suffering a completely independent fresh incident of ear damage. I think I'd know the difference between what I've considered cured to date vs what I believe being truly cured would feel like though.

That's why I'm trying to contact him so he can explain more on which hyperacusis he had.

I still believe in the theory that if we can regrow OHCs then this could get rid of pain hyperacusis. I feel like those who have hyperacusis instead of losing hearing from the loss of OHCs it somehow increases the gain and causes it to leak ATP and the type 2 neuron fibres so we get more pain easily.

 

[100Hz]

Yes, either

Regrow or fix hair cells to stop ATP leaking to type IIs with fx322 for those unlucky enough to suffer hair cell damage in this way through genetics or whatever.

Regrow hair cells and re attach disconnected synapses with a combination of FX322, Hough Pill, and OTO drugs.

Or in the case that Type IIs are now independently causing pain due to sensitisation then something like Retigabine or a blocker of some sort etc.

 

[Lucifer]

Yes, either

Regrow or fix hair cells to stop ATP leaking to type IIs with fx322 for those unlucky enough to suffer hair cell damage in this way through genetics or whatever.

Regrow hair cells and re attach disconnected synapses with a combination of FX322, Hough Pill, and OTO drugs.

Or in the case that Type IIs are now independently causing pain due to sensitisation then something like Retigabine or a blocker of some sort etc.

I really hope it's FX-322 that resolves our pain hyperacusis issue. I will be so gutted if it turns out we need retigabine to solve our issues, we will be waiting for a very long time :'(.

 

[xyz]

I didn't mention the Regain anecdote as a passing wishful thinking comment, there's a specific reason I brought him up again.

The whole point behind this thread was to hypothesize that an acoustic shock causes a physical injury that does not heal naturally and leads to the underlying spectrum of H symptom severity, and no matter how much the hypothetical damage, or inflammation resulting from it calms down and appears to improve over time, in the end H sufferers generally get over confident and get hurt again and again until they learn to be really careful and hold the inflammation down at all costs, because that damage still exists. I suggest to read the whole thread if you haven't, because its very specific in what its about.

I know that lots of H sufferers generally relapse, learn to be careful, or might even be able to start going to clubs again with ear plugs etc. but I seriously doubt they're cured, not with the typical usual line of offerings and suggestions from ENT's like ginko, magnesium, curcumin+pepper, TRT or any of the other drugs they offer like prednisone, lyrica, neurontin, every type of benzo , xanax, etc. Even just silence and rest. I've tried most of these and see regularly others trying all sorts of drugs. They either just didn't work for me (apart from silence and rest, very occasional prednisone when in real pain) or they had some effect but caused other very negative effects. I know some things work for some people at some level though which is good.

The above supplements and drugs are not cures though, they only alleviate symptoms. Regain was a whole different thing, it proposed to regenerate hair cells and, I believe, please correct me otherwise, reconnect synapses of any hair cells that it did regenerate and I know this anecdote gets thrown around a lot it and can get pretty tiring to hear about, but the only time Ive ever heard of a H sufferer being offered something on a whole different level that could potentially cure the actual acoustic shock damage in his ear was in that anecdote. That's why I think its so significant if its true and is why I'd be interested to know what 'level' of cured he considered himself to be, because it would start to throw some weight behind the theory that something gets physically broken during an acoustic shock that needs proper physical repair.

Regain might have failed because it didn't meet its exact endpoints or whatever but that doesn't mean it didn't fix anyone's hearing and if this guy did go back to touring, and I'm not talking about touring whilst being very careful, wearing earplugs, minor setbacks here and there etc. I'm talking about full on sound levels again plus the confidence that Regain worked and that he knows he's fully recovered then that would be a totally different thing to any kind of recovery I've ever experienced or heard about.

Of course you could suffer a brand new acoustic shock, just like you could suffer a brand new broken leg. That's a very difficult distinction to make though between being either a) appearing to be cured or being actually cured but left susceptible to re-injury, and then relapsing, vs. b) genuinely being cured and suffering a completely independent fresh incident of ear damage. I think I'd know the difference between what I've considered cured to date vs what I believe being truly cured would feel like though.

Yes, let's hope inner ear regeneration will truly cure us. However even if the OHC theory is correct, you know that FX-322 reaches only the higher frequencies (at least in the current version). But these are also the most vulnerable as I have read. So if this OHC pain hyperacusis theory is true, FX-322 might give us some significant improvement, but there might be still some broken OHCs deep in the cochlear.

 

[Lucifer]

Yes, let's hope inner ear regeneration will truly cure us. However even if the OHC theory is correct, you know that FX-322 reaches only the higher frequencies (at least in the current version). But these are also the most vulnerable as I have read. So if this OHC pain hyperacusis theory is true, FX-322 might give us some significant improvement, but there might be still some broken OHCs deep in the cochlear.

Yea that's true. If we can get at least a 50%-75% of recovery I'll take it. At least we would know if the FX-322 solution works then they can refine it by using a better delivery method to target all frequencies.

 

[100Hz]

Yes, let's hope inner ear regeneration will truly cure us. However even if the OHC theory is correct, you know that FX-322 reaches only the higher frequencies (at least in the current version). But these are also the most vulnerable as I have read. So if this OHC pain hyperacusis theory is true, FX-322 might give us some significant improvement, but there might be still some broken OHCs deep in the cochlear.

Good point, I agree with you, it would be a problem for hyperacusis. The only thing that I think makes it a bit more unlikely though is how many people with H seem to have very good hearing within the normal range suggesting that OHC damage in slightly lower frequencies may be less likely. I'm hoping its synapse damage in the UHF's as there are so many potential drugs for this theoretical hyperacusis pathology.

 

[Born To Slay]

know this is just anecdotal but it does seem that many hyperacusis people, myself included, have a harder time with higher frequency sounds. So that could indicate damage there as opposed to the lower ones.

 

[Juan]

I wonder sometimes could it be possible that it is the actual event of the acoustic shock itself that causes the initial disconnection of the synapses from the hair cells.

Look up auditory neuropathy.

Also, I am no musician so it is hard to describe in accurate terms the properties of sound. After hyperacusis you may perceive sound very different. Examples:

- Some sounds seem to hit some sensitive area in your ear (my personal guess is a particular area in the Organ of Corti) and that particular frequency is greatly amplified. This may also happen with the voices of a certain pitch.

- Sounds are perceive dimmed (muffled) but a "central" frequency is enhanced. The subtleties of very low and very high sounds are missing but the central frequencies seem amplified.

- There's echo to the sounds you hear. Voices sound a bit like wah wah wah.. with echo but not clear. Like talking to someone on a tiled staircase...

- In a noisy plane noise seems dimmed and voices of people enhanced over noise, or the contrary.

- Everything sounds flat and muffled (like several sound frequencies merged)

- Sound is perceived slower than usual, like travelling to your brain in slow-motion

- It is hard to follow fast-paced speech

And this is just my personal experience...



My personal guess is that damaged synapses may have to do with auditory neuropathy. This is, your audiometric test is ok, normal or close to normal, but the interpretation of sound (and specially language) by the brain is poor in comparison with the audiometric test results.

 

[Lucifer]

Since most people with hyperacusis have trouble with high frequency sounds this could mean a loss in both IHCs and OHCs in the higher frequencies therefore also a loss in synapses so FX-322 will work to some extent to restore synapses where there is a loss in OHCs and IHCs.

 

[Born To Slay]

Since most people with hyperacusis have trouble with high frequency sounds this could mean a loss in both IHCs and OHCs in the higher frequencies therefore also a loss in synapses so FX-322 will work to some extent to restore synapses where there is a loss in OHCs and IHCs.

It'd be interesting if pain hyperacusis was cured only in the higher frequencies. I could see a scenario where listening to music would be less painful then riding in a car, weird.

 

[serendipity1996]

Since most people with hyperacusis have trouble with high frequency sounds this could mean a loss in both IHCs and OHCs in the higher frequencies therefore also a loss in synapses so FX-322 will work to some extent to restore synapses where there is a loss in OHCs and IHCs.

I think the million-dollar question with noxacusis is whether restoring lost input will solve it or whether we need to specifically address the A2 nerve fibers with a blocking drug, e.g. retigabine.

 

[Lucifer]

It'd be interesting if pain hyperacusis was cured only in the higher frequencies. I could see a scenario where listening to music would be less painful then riding in a car, weird.

Those with hyperacusis that have a sensitivity to high frequency sounds, do you also have a sensitivity to low frequency sounds such as bass?

 

[Lucifer]

I think the million-dollar question with noxacusis is whether restoring lost input will solve it or whether we need to specifically address the A2 nerve fibers with a blocking drug, e.g. retigabine.

I do hope restoring loss input e.g. OHCs and IHCs will allow pain hyperacusis to diminish. It will suck so bad if it turns out we need Retigabine or something else to get rid of pain hyperacusis.

 

[Born To Slay]

Those with hyperacusis that have a sensitivity to high frequency sounds, do you also have a sensitivity to low frequency sounds such as bass?

Yeah but honestly, if they only cured the higher frequencies, I could function again until the rest is cured.

 

[Lola808]

Why can't we cut the muscle? It's minimally invasive I was told. That's the muscle that triggers the nerve. Then also can stop the thumping of over active TTTS?

 

[serendipity1996]

The thing that still nags at me is how do we explain pain hyperacusis that is only triggered by certain frequencies/sounds. It's a real spectrum where on the one end you have people who experience horrendous agonising pain at the vast majority of sounds e.g Joyce Cohen.

And then you have those who occupy a weird kind of middle-ground (like myself) where I have no problems with like 75% of everyday sound but experience symptoms in response to e.g artificial audio from a laptop. Why does 80dB sound from my vacuum cleaner or hairdryer for 15-20 mins not hurt but 50-60dB sound from my laptop speakers cause pin prickling and facial tension within the same amount of time. It also triggers heightened reactive tinnitus so I feel like there's a link there.Like wtf is going on at a physiological level and this is something I haven't seen addressed really in research thus far - like we have established that these type 2 fibers are likely sending pain signals in response to non-damaging sound levels but why does this mechanism only occur for certain specific frequencies/sounds in some cases. I reckon this could be frequency-specific damage as a consequence of physical damage to the ear at a certain frequency thus triggering selective pain hyperacusis.

 

[100Hz]

Look up auditory neuropathy.

Also, I am no musician so it is hard to describe in accurate terms the properties of sound. After hyperacusis you may perceive sound very different. Examples:

- Some sounds seem to hit some sensitive area in your ear (my personal guess is a particular area in the Organ of Corti) and that particular frequency is greatly amplified. This may also happen with the voices of a certain pitch.

- Sounds are perceive dimmed (muffled) but a "central" frequency is enhanced. The subtleties of very low and very high sounds are missing but the central frequencies seem amplified.

- There's echo to the sounds you hear. Voices sound a bit like wah wah wah.. with echo but not clear. Like talking to someone on a tiled staircase...

- In a noisy plane noise seems dimmed and voices of people enhanced over noise, or the contrary.

- Everything sounds flat and muffled (like several sound frequencies merged)

- Sound is perceived slower than usual, like travelling to your brain in slow-motion

- It is hard to follow fast-paced speech

And this is just my personal experience...



My personal guess is that damaged synapses may have to do with auditory neuropathy. This is, your audiometric test is ok, normal or close to normal, but the interpretation of sound (and specially language) by the brain is poor in comparison with the audiometric test results.

This is a good point, I have a couple of these symptoms, especially the first one. As per this thread these are symptoms that get better and worse as recoveries & set backs happen, but never actually seem to heal no matter how good they get. I didn't have any of these symptoms before acoustic shock, they all started directly after it. Its why I'm so focused that acoustic shock leads to physical damage that requires fixing, and I find hope in that all of the physical damage theories and facts that seem to be emerging at the moment, also have various potential treatments being worked on to address them. It suggests that H does better align itself with the more feasibly curable hearing problems and isn't quite the unknown thing that its made out to be.

 

[Lucifer]

The thing that still nags at me is how do we explain pain hyperacusis that is only triggered by certain frequencies/sounds. It's a real spectrum where on the one end you have people who experience horrendous agonising pain at the vast majority of sounds e.g Joyce Cohen.

And then you have those who occupy a weird kind of middle-ground (like myself) where I have no problems with like 75% of everyday sound but experience symptoms in response to e.g artificial audio from a laptop. Why does 80dB sound from my vacuum cleaner or hairdryer for 15-20 mins not hurt but 50-60dB sound from my laptop speakers cause pin prickling and facial tension within the same amount of time. It also triggers heightened reactive tinnitus so I feel like there's a link there.Like wtf is going on at a physiological level and this is something I haven't seen addressed really in research thus far - like we have established that these type 2 fibers are likely sending pain signals in response to non-damaging sound levels but why does this mechanism only occur for certain specific frequencies/sounds in some cases. I reckon this could be frequency-specific damage as a consequence of physical damage to the ear at a certain frequency thus triggering selective pain hyperacusis.

If it is specific frequency type damage then surely when OHCs and IHCs regrow it should stop triggering pain at those frequencies. I know with the current delivery method it will mainly help with high frequency but if it ends up solving 50-75% of the problem then that would be enough for me to resume my life until a new delivery method is created.

 

[100Hz]

The thing that still nags at me is how do we explain pain hyperacusis that is only triggered by certain frequencies/sounds. It's a real spectrum where on the one end you have people who experience horrendous agonising pain at the vast majority of sounds e.g Joyce Cohen.

And then you have those who occupy a weird kind of middle-ground (like myself) where I have no problems with like 75% of everyday sound but experience symptoms in response to e.g artificial audio from a laptop. Why does 80dB sound from my vacuum cleaner or hairdryer for 15-20 mins not hurt but 50-60dB sound from my laptop speakers cause pin prickling and facial tension within the same amount of time. It also triggers heightened reactive tinnitus so I feel like there's a link there.Like wtf is going on at a physiological level and this is something I haven't seen addressed really in research thus far - like we have established that these type 2 fibers are likely sending pain signals in response to non-damaging sound levels but why does this mechanism only occur for certain specific frequencies/sounds in some cases. I reckon this could be frequency-specific damage as a consequence of physical damage to the ear at a certain frequency thus triggering selective pain hyperacusis.

Yes I'd definitely assume that it's frequency specific damage. Either synapses according to what frequency hair cell they detached from or type IIs according to the frequency of the cell they are connected to. I'm the same, only certain noises or frequencies affect me, all are higher frequencies.

 

[Juan]

It suggests that H does better align itself with the more feasibly curable hearing problems and isn't quite the unknown thing that its made out to be.

How noise trauma is a "feasibly curable hearing problem"?

To date, there's no cure for noise trauma, for NIHL. There's hearing aids but that's not a cure, and for many people doesn't even work

 

[100Hz]

How noise trauma is a "feasibly curable hearing problem"?

To date, there's no cure for noise trauma, for NIHL. There's hearing aids but that's not a cure, and for many people doesn't even work

I know there's no cure yet. When I say feasible (maybe I could've used a better, sorry) I mean something that's got a possible solution in trials and is hopefully somewhere on the horizon. NIHL isn't curable yet but has everyone hoping for FX322 for example.

I wouldn't consider acoustic shock a hearing condition. It is an hearing incident / accident that causes a hearing condition (H for the purpose of this thread) by damaging something. If the physical damage caused as a result of an acoustic shock is any of those pathologies mentioned above, then there are possible solutions for them currently being worked on and / or in trials.

 

[Juan]

has everyone hoping for FX322 for example.

My personal feeling is that's not going to happen... people with hearing problems have been reading about tales like that for decades, and there is never a cure or a way to fix hearing damage. So... let's be realistic.

 

[grate_biff]

I wouldn't consider acoustic shock a hearing condition. It is an hearing incident / accident that causes a hearing condition (H for the purpose of this thread) by damaging something.

May I propose another theory as to why our problems occur due to an acoustic shock. I found this article very interesting and believable:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190/

Anybody interested in this should really read it. I think it explains better why some can get better, why it can come back etc..

 

[serendipity1996]

My personal feeling is that's not going to happen... people with hearing problems have been reading about tales like that for decades, and there is never a cure or a way to fix hearing damage. So... let's be realistic.

I don't know, have you read the research thread on Frequency? Of course we don't know yet whether it will be a solution but they have achieved very promising results so far - they have already demonstrated that their drug reaches the cochlea and it has regrown hair cells in explanted cochleas. I get what you're saying but also I do think we have reached a turning point where biotech and pharma companies are becoming increasing invested in hearing regeneration. Even a few years ago e.g 2016/17 there were very few companies in clinical trials. A decade ago there was nothing. Hearing regeneration was barely even a thing back then apart from in the most basic preliminary animal models so I don't think it really makes sense. So very real progress has been made since then.

 

[serendipity1996]

Yes I'd definitely assume that it's frequency specific damage. Either synapses according to what frequency hair cell they detached from or type IIs according to the frequency of the cell they are connected to. I'm the same, only certain noises or frequencies affect me, all are higher frequencies.

What are the specific things that trigger yours?

 

[100Hz]

May I propose another theory as to why our problems occur due to an acoustic shock. I found this article very interesting and believable:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190/

Anybody interested in this should really read it. I think it explains better why some can get better, why it can come back etc..

Thx @grate_biff. I seem to remember reading that years ago when I got the acoustic shock. I'll read it again properly when I get time.

 

[Juan]

May I propose another theory as to why our problems occur due to an acoustic shock. I found this article very interesting and believable:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190/

Anybody interested in this should really read it. I think it explains better why some can get better, why it can come back etc..

I read it a long time ago. TCC may explain why when someone tries to focus on a sound their body has that "alert" position, with tense neck etc... I do think that a tense neck and shoulders have an impact on how we hear and focus on sound, especially when it is hard to perceive or make out among noise.

 

[serendipity1996]

It'd be interesting if pain hyperacusis was cured only in the higher frequencies. I could see a scenario where listening to music would be less painful then riding in a car, weird.

My current situation = no problems with riding in a car but unable to listen to music lol

 

[Born To Slay]

My current situation = no problems with riding in a car but unable to listen to music lol

It's weird, I'll say that riding in a car on most days won't cause any problems. Like it's not like before I had hyperacusis but it's maybe 2% irritating.