Why Has Damage Been Ruled Out as a Cause for Hyperacusis or Ear Pain?

[bill 112]

The thing is that even if you found out through some test that there is damage to the hair cells, as of today the medical profession can do nothing about it, nothing to fix it really. That may be the reason why many doctor are so apathetic at dealing with patients with H or T who go back to visit them regularly to see if a new treatment came up or if their doctors learned something new in the meantime.

Some people with rare diseases (not only H) end up knowing more about the condition than their doctors, and that does not say much in favour of the medical profession, which sometimes seem like mere dispatchers of drugs, like subsidiaries of pharma companies.

This is why people like ATEOS are so important in my eyes,they know mainstream or western medicine can't provide any real treatment or cure for such conditions so he went out of his way to find his own answers and treatment i.e LLLT and SC therapy.

People can sit back and criticise such decisions but these are the same people who haven't been cured by western medicine,if anything it has made them worse!

ATEOS got a 50% reduction in his symptoms and I'm yet to see western medicine provide that sort of relief to members here,the best they can offer us is"listen to crickets"

 

[GregCA]

The thing is that even if you found out through some test that there is damage to the hair cells, as of today the medical profession can do nothing about it, nothing to fix it really.

That is true, but having the knowledge is still better than not knowing, even if you end up knowing that it's not actionable. It's better because without that knowledge you'd be trying all kinds of therapies that are sure to not work, which is a waste of resources (time, money, etc) but more importantly risky.

 

[PaulBe]

That is true, but having the knowledge is still better than not knowing, even if you end up knowing that it's not actionable. It's better because without that knowledge you'd be trying all kinds of therapies that are sure to not work, which is a waste of resources (time, money, etc) but more importantly risky.

And it gives you a fighting chance of preventing further injury if you know cause and expected course. Knowing allows at least for better planning and prevention.

 

[Michael Leigh]

I've been told by at least 3 doctors is that TRUE H is very rare

ENT doctors know all about the anatomy of the ear and are able to treat it medically or surgically. I have a lot respect for their knowledge and skill in this field .

Tinnitus and Hyperacusis can be complex conditions and no two people experience them the same. The majority of ENT doctors have never experienced tinnitus or hyperacusis at least not to the severity of many people that visit tinnitus talk. Therefore, in my opinion they no nothing about these two conditions. My ENT doctor once told me that I know more about tinnitus than her for the simple reason she had never experienced it.
Michael

 

[stophiss]

For example, no responsible practitioner would "rule out" hearing damage as a factor in hyperacusis. With today's technology, it's not even remotely possible.

This^^^ Not sure Sen where you get your thesis from...perhaps from the same group of practitioners that believe TRT is bogus as well, tho intuitively you would think that TRT proponents would be in non damage camp...lol.

If you look hard enough through the esoteric minutia, there is a bit of everything for somebody to believe. Each has to make their choices as to what is true based upon what they believe.

Sen, if you believe that H has its vestiges rooted in neurological aka synaptic damage like I do which countless others believe as well, then I believe you are right. Where I believe you and I part is...you believe because hearing damage maybe the root of H for many (Libermann), therefore TRT can not be effective. That is where I disagree. If a brain is a lawnmower motor thats burns oil because it has a lot of wear...that doesn't mean the same worn motor can't benefit from a fresh spark plug and carb cleaning.

 

[Lex]

Each has to make their choices as to what is true based upon what they believe.

It almost sounds like a religion.

 

[stophiss]

It almost sounds like a religion.

Hi Alex,
Well...Sen made the reference to voodoo and the reality is, in spite of lack of foundation based in Physics, voodoo is true for those that believe in it. Have you ever met a person with true peace of mind because they believe to their core that God has their back? As repugnant as this is to me, we all know nut jobs like that. Their belief, as wacked out as it is, gives them great calm and serenity in their lives. So yeah, what you believe does become a self fulfilling prophesy of sorts. Just like if you don't believe something. Like a person who believes they can't win at something and always find a way to lose.

 

[lapidus]

For example, no responsible practitioner would "rule out" hearing damage as a factor in hyperacusis. With today's technology, it's not even remotely possible.

This^^^ Not sure Sen where you get your thesis from...perhaps from the same group of practitioners that believe TRT is bogus as well, tho intuitively you would think that TRT proponents would be in non damage camp...lol.

If you look hard enough through the esoteric minutia, there is a bit of everything for somebody to believe. Each has to make their choices as to what is true based upon what they believe.

The first ENT I visited when my H started in 2013 "ruled out" inner ear damage directly, based on my hearing test. I didn't know as much about H then as I know now sadly, so I didn't really question him. If you look at tinnitus.org (the official TRT page by Jonathan Hazel) you'll see that "no inner ear damage" is the general consensus among the "TRT camp". This is based only on Hazel's and Jastreboff's gut feelings. There is no hard science behind their claims, yet ENTs, Audiologists and other clinican's has followed these ideas without question for a long time now. So damage is actually ruled out for many of us when we visit doctors.

http://tinnitus.org/hyperacusis-etc/

 

[stophiss]

Seems preposterous that T and/or H can't be related to hearing damage aka neuropathy within the hearing apparatus and/or auditory cortex aka brain. H then must be an acquired taste.

 

[Sen]

Not sure Sen where you get your thesis from

From audiologists and TRT practitioners. It's actually very common for people who acquire hyperacusis, tinnitus, and ear pain from noise to have no additional measurable damage to their ears.

I had a full audiological evaluation a year before H and T happened and a full audiological evaluation after. The only thing that changed were my LDLs.

 

[stophiss]

From audiologists and TRT practitioners. It's actually very common for people who acquire hyperacusis, tinnitus, and ear pain from noise to have no additional measurable damage to their ears.

I had a full audiological evaluation a year before H and T happened and a full audiological evaluation after. The only thing that changed were my LDLs.

If you want to further refine your definition of 'damage' Sen, then they are correct aren't they? You pass a hearing test and you have H and T without 'damage'. Of course there is the widely held belief of hidden hearing loss as well...or hearing deficit that isn't full recorded by a hearing test. Another way to look at tinnitus is...it isn't a function of hearing loss...but rather adjunctive sound that isn't mechanically based. To me, that's damage. But you may have a different interpretation of what damage is.

 

[Sen]

If you want to further refine your definition of 'damage' Sen, then they are correct aren't they?

Absence of evidence isn't evidence of absence. Keep in mind that there has been no mechanism identified for hyperacusis at all. In my opinion the claim that it isn't damage is a little pre-emptive.

I'm sure you are aware of Charles Liberman's recent findings. These are some noteworthy examples of objective damage that is currently immeasurable through audiological testing.

 

[stophiss]

Absence of evidence isn't evidence of absence. Keep in mind that there has been no mechanism identified for hyperacusis at all. In my opinion the claim that it isn't damage is a little pre-emptive.

I'm sure you are aware of Charles Liberman's recent findings. These are some noteworthy examples of objective damage that is currently immeasurable through audiological testing.

Is a little pre-emptive like being partly pregnant?
Your query may matter to one day solving T and H...to better understand the underlying cause of T and H, but I don't see any particular relevancy other than the academic exercise. If you believe your query is relevant, please explain why.

To me, a person certainly can have pretty good hearing like you and I do and still have H and T...though the rudiment of each may be founded in some level of hearing loss difficult to detect in a hearing test. My view is H is neuropathy of the brain. The brain turns up gain on certain frequencies that are perceived to change due to nerve damage based upon perception of the brain that certain frequencies are no longer heard properly. I believe T and H with decent hearing is the standard train route of hearing that for some reason...likely due to change in brain chemistry....jumps off the proverbial train track and enlists adjacent here-to-fore dormant neurons which creates a non mechanically based sound and turns up the amplifier gain on certain frequencies. Only a theory.

 

[Sen]

If you believe your query is relevant, please explain why.

Because it leads to claims like "hyperacusics are at no greater risk of further damage than individuals without hyperacusis."

The threshold for worsening hyperacusis is set at the threshold of damage as it appears on an audiogram, when in fact the audiogram has nothing to do with hyperacusis. There are plenty of anecdotal accounts of long term or permanent worsening from ordinary noises that one could encounter in any given day. You yourself have claimed on this board that hyperacusics are more susceptible to damage than normal individuals.

If it's true that hyperacusics are more susceptible to damage than normal individuals, the advice that they are not more susceptible to damage than normal individuals is both irresponsible and false, and has no place in a clinical setting.

 

[stophiss]

Because it leads to claims like "normal sounds in most cases cannot cause damage as measured in audiological testing, therefore hyperacusics are at no greater risk of further damage than individuals without hyperacusis."

The threshold for worsening hyperacusis is set at the threshold of damage as it appears on an audiogram, when in fact the audiogram has nothing to do with hyperacusis. There are plenty of anecdotal accounts of long term or permanent worsening from ordinary noises that one could encounter in any given day. You yourself have claimed on this board that hyperacusics are more susceptible to damage than normal individuals.

If it's true that hyperacusics are more susceptible to damage than normal individuals, the advice that they are not more susceptible to damage than normal individuals is both irresponsible and false, and has no place in a clinical setting.

Good points. We agree, there are holes in perhaps conventional wisdom even held within professional circles.
Question is...define normal sounds. Is this all sub 75dB threshold? I agree that the threshold of damage that appears on an audiogram when an audiogram has nothing to do with H, is without foundation.

But lets briefly probe a notion discussed on this H forum and I believe bill is an example. You maybe preoccupied with the sound environment of someone with H like you and me, but in the grand scheme, a person's H improving or getting worse maybe somewhat independent of 'precise sound environment' over time. How could sound not be the sole determinant of H moving forward? Because if one subscribes to the notion that H is a function of nerve damage within the brain, there isn't necessarily a precise correlation between this nerve damage and what sound a person is subjected to. This even includes leading up to T and H. Sound environment isn't the single dictate of H getting better or getting worse. It may even be determined that H is a genetic neurological disease almost independent of sound...or sound level being only one contributor.

 

[Juan]

That is true, but having the knowledge is still better than not knowing, even if you end up knowing that it's not actionable. It's better because without that knowledge you'd be trying all kinds of therapies that are sure to not work, which is a waste of resources (time, money, etc) but more importantly risky.

You are right, having the knowledge is better indeed, but one has to balance the benefits and risks of many medical tests. I was one of the "brave" ones and took an MRI with very severe H, which I later deeply regretted. The doctor said it would be very unlikely to find something relevant with the MRI but they wanted to rule out rare conditions like an acoustic neuroma. Well, at the time I was really low and H was so severe that in the end I gave up to family pressure and other doctor pressure to take the test. It made things a lot worse, and progress a lot harder. It probably did some permanent damage to my hearing.

OAEs are loud too; I briefly started that test too and asked the nurse to stop it, but they did not find anything relevant.

At the end of the day, many ENTs and doctors just give up because, even if they know little about H, they do know that trying some "experimental" intervention, or running more and more test on the patient is going to be of little or no real benefit.

 

[Juan]

This is why people like ATEOS are so important in my eyes,they know mainstream or western medicine can't provide any real treatment or cure for such conditions so he went out of his way to find his own answers and treatment i.e LLLT and SC therapy.

People can sit back and criticise such decisions but these are the same people who haven't been cured by western medicine,if anything it has made them worse!

ATEOS got a 50% reduction in his symptoms and I'm yet to see western medicine provide that sort of relief to members here,the best they can offer us is"listen to crickets"

Sorry, but I am not familiar with what you are saying. What did Ateos do to improve from H?

For me exercise and a very healthy diet work (raw food, dry fruits, vegetables, fish..). The problem is where to go to exercise. Gyms are a no no, very loud. Then even running gets one exposed to the odd noises. It is hard to find a balance, because it is important not to worsen H or our hearing; I am "discovering" - sadly - than losing hearing in high frequencies seems to make my H harder to cure. People lose hearing due to noise because our hearing system does not have protection mechanisms to dampen sound quick enough, or lower the transmission of sound, in the presence of impulse noise. Well, if a person for a start does not hear well some frequencies that makes the hearing system lose another extra milisecond to "close" (as much as it can do this) in the presence of noise (it is harder to hear the start of a noise, for instance a very loud noise at a distance).

An ENT explained to me that our hearing is designed to resist most of the sounds of nature, specially the low sounds, and that the way it dampens loud sounds depends on a number of muscles that tighten fast, but apparently this way of lowering the volume of sound that gets in to the cochlea works worse as we progress on the sound scale towards the highest frequencies. Basically, it would be easier to put up with noise of thunder than with noise made by an angry macaw (this would probably trigger a flight response instead of an state of alertness). The problem is that the sounds produced nowadays by machines resemble more the volume and pitch of an angry macaw than the low register of thunder... so impulse noise can do a lot of damage and it is really hard to predict; it is just impossible to know the moment when someone is going to honk or use a power tool next door.

 

[stophiss]

You are right, having the knowledge is better indeed, but one has to balance the benefits and risks of many medical tests. I was one of the "brave" ones and took an MRI with very severe H, which I later deeply regretted. The doctor said it would be very unlikely to find something relevant with the MRI but they wanted to rule out rare conditions like an acoustic neuroma. Well, at the time I was really low and H was so severe that in the end I gave up to family pressure and other doctor pressure to take the test. It made things a lot worse, and progress a lot harder. It probably did some permanent damage to my hearing.

OAEs are loud too; I briefly started that test too and asked the nurse to stop it, but they did not find anything relevant.

At the end of the day, many ENTs and doctors just give up because, even if they know little about H, they do know that trying some "experimental" intervention, or running more and more test on the patient is going to be of little or no real benefit.

Juan, have you improved since your MRI?

 

[Juan]

Juan, have you improved since your MRI?

Yeah, I improved a lot, at the expense of losing some hearing in high frequencies (like -30 at 8.000 dbs; I believe the MRI did that initial damage). However, I have had a relapse recently due to very loud and close noise. I am very careful but was really unlucky and since then, in like a month my hearing has dropped to the region of -60 dbs at 8.000. Right now it is harder to understand TV for instance, but the sensitivity to very loud sounds is not gone. The sensitivity to medium sounds is gone and I am no longer affected by someone who closes a door a bit loud, or kitchen noises, dishes, babies crying, some of the noises of traffic etc. It's the very loud noises from tools, machines, cars honking, that kill me. The very loud noises that bother everyone still totally kill me.

At my best moment with H I would recover from a very loud sound in one or two days. Well, it took a month to recover from the last offence, so I am quite worried at how things are progressing.

I must say that I was walking around for several years even having very severe H, did sound therapy, and worked around medium-loud sounds, peaks of loud sound sometimes. This is why I honestly think that TRT or any sound therapy does not work, because I did the sound therapy and even more, since I was leading a close to normal life with no hearing protection.

The significant improvement occurred when I started using hearing protection when going outside, even for a walk and then carried on doing sound therapy at home. My experiences is that a single very loud noise can erase months of progress, and the time I spent without hearing protection was a source of anxiety, and of "sound accidents", like someone honking close to me, or unexpected things like that, sounds that would bother anyone.

Right now I am comfortable at around 90 dbs; I can go to a restaurant with that volume (without earplugs), better if it is only people speaking loud and not music or other noises. But this does not mean I am cured because there are tons of everyday sounds that go well over 90 dbs, or that are very loud and on top have nasty frequencies or vibrations.

The thing with doctors and sound therapy is that they problably would classify someone like me as cured, or as a success case, because there has been great improvement in terms of sound tolerance. However, this came at a cost of losing hearing and over a very long time, and I have experienced several relapses due to one off noises. Some doctors also assume that if a patient that went to their clinic twice does not come back that means he or she is cured. So in statistics are very misleading.

 

[PaulBe]

The first ENT I visited when my H started in 2013 "ruled out" inner ear damage directly, based on my hearing test.

You don't declare someone doesn't have cardiac disease simply because their blood pressure is in the accepted normal range. Health workers can be far too smug about their tests and their reliability.

 

[Canador]

Health workers can be far too smug about their tests and their reliability.

So you're saying that a 100-year-old invention that beeps in your ear cannot tell you everything there is to know about human hearing?

 

[bill 112]

Sorry, but I am not familiar with what you are saying. What did Ateos do to improve from H?

For me exercise and a very healthy diet work (raw food, dry fruits, vegetables, fish..). The problem is where to go to exercise. Gyms are a no no, very loud. Then even running gets one exposed to the odd noises. It is hard to find a balance, because it is important not to worsen H or our hearing; I am "discovering" - sadly - than losing hearing in high frequencies seems to make my H harder to cure. People lose hearing due to noise because our hearing system does not have protection mechanisms to dampen sound quick enough, or lower the transmission of sound, in the presence of impulse noise. Well, if a person for a start does not hear well some frequencies that makes the hearing system lose another extra milisecond to "close" (as much as it can do this) in the presence of noise (it is harder to hear the start of a noise, for instance a very loud noise at a distance).

An ENT explained to me that our hearing is designed to resist most of the sounds of nature, specially the low sounds, and that the way it dampens loud sounds depends on a number of muscles that tighten fast, but apparently this way of lowering the volume of sound that gets in to the cochlea works worse as we progress on the sound scale towards the highest frequencies. Basically, it would be easier to put up with noise of thunder than with noise made by an angry macaw (this would probably trigger a flight response instead of an state of alertness). The problem is that the sounds produced nowadays by machines resemble more the volume and pitch of an angry macaw than the low register of thunder... so impulse noise can do a lot of damage and it is really hard to predict; it is just impossible to know the moment when someone is going to honk or use a power tool next door.

I screwed myself over,my H had reduced significantly along with my T and I began living a normal life again whilst shrugging off loud noises that were bothersome to me.I began going to noisier places and getting hit by impulse noise on a daily basis,rather than acknowledge the pain I was beginning to feel I simply tried to dull it with painkillers and carry on.

The reason was I had began seeing a girl,a girl I really liked and I put her first and my ears second,that was my big mistake.Before I met her I would never go anywhere noisy and if I did have a noisey day I immediately rested my ears,I was very protective of them as you can imagine for two years leading up to me meeting her.

We never done anything stupidly loud but nonetheless it was too much noise too often for me and in January everything just got way worse as a result,I didn't want her to get bored of me so I put myself under far too much pressure and screwed my ears.

Things have just gone downhill since January last year,I blame myself for everything.I was so smart about my hearing and always two steps ahead when it came to loud noise,but I let my guard down and began trying to live a completely normal life which sadly my ears just could not handle on a daily basis,two months is all it took.

 

[Juan]

I screwed myself over,my H had reduced significantly along with my T and I began living a normal life again whilst shrugging off loud noises that were bothersome to me.I began going to noisier places and getting hit by impulse noise on a daily basis,rather than acknowledge the pain I was beginning to feel I simply tried to dull it with painkillers and carry on.

The reason was I had began seeing a girl,a girl I really liked and I put her first and my ears second,that was my big mistake.Before I met her I would never go anywhere noisy and if I did have a noisey day I immediately rested my ears,I was very protective of them as you can imagine for two years leading up to me meeting her.

We never done anything stupidly loud but nonetheless it was too much noise too often for me and in January everything just got way worse as a result,I didn't want her to get bored of me so I put myself under far too much pressure and screwed my ears.

Things have just gone downhill since January last year,I blame myself for everything.I was so smart about my hearing and always two steps ahead when it came to loud noise,but I let my guard down and began trying to live a completely normal life which sadly my ears just could not handle on a daily basis,two months is all it took.

It's hard to be always on guard, and unexpected things do happen often. The problem with H is you do not need to go to a very noisy place to get a relapse; just walking around a busy street full of traffic and hearing a very loud bike or a nasty honk is enough (at least for me). These are brief sounds (but very loud) and many people are fine with them, but over time they have a cumulative effect for everyone, and may damage hearing in the long run, deteriorate hearing faster than normal.

It is hard to lead a very normal life with H, but I didnt have problems dating. It is better to explain what H is, and that you might need hearing protection. If you were hearing impaired no one would blame you in any way for wearing hearing aids, and people wear glasses if they dont see well. Why wouldnt you wear earplugs or even earmuffs if you need them at a certain moment?

If you explain about H to your girlfriend, she will know that you need to wear hearing protection sometimes. Even huge earmuffs.. my girlfriend totally understands

 

[bill 112]

@Juan
That's what I did do,after our first date I explained to her about H and that loud places were a no go for me and she totally understood,if anything she became a second pair of ears and eyes for me and was always trying to protect me from loud noises.

We then went to a family get together in memory of her father,we climbed a mountain,had dinner at a restaurant after which was extremely quiet and then drinks in the pub after.
At first it wasn't too noisy but it eventually got noisier as more idiots showed up,I nodded at her and she knew what I meant and we got up and went to a quieter pub up the street.

It was the same at my fathers funeral,we sat outside talking to everybody and it was fine,suddenly I felt her hands cover my ears and a firework was let off right beside me.
We got up and left immediately after that as the place has now become a hazzard.

She was great,always looking out for me but I fear it was the unexpected noises that got me and in turn worsened me over such a small time period,I wasn't aware of just how easy this thing could worsen until it had already happened!

It's sad and I just blame myself for everything,I could have done more but I didn't.

 

[Juan]

@Juan
That's what I did do,after our first date I explained to her about H and that loud places were a no go for me and she totally understood,if anything she became a second pair of ears and eyes for me and was always trying to protect me from loud noises.

We then went to a family get together in memory of her father,we climbed a mountain,had dinner at a restaurant after which was extremely quiet and then drinks in the pub after.
At first it wasn't too noisy but it eventually got noisier as more idiots showed up,I nodded at her and she knew what I meant and we got up and went to a quieter pub up the street.

It was the same at my fathers funeral,we sat outside talking to everybody and it was fine,suddenly I felt her hands cover my ears and a firework was let off right beside me.
We got up and left immediately after that as the place has now become a hazzard.

She was great,always looking out for me but I fear it was the unexpected noises that got me and in turn worsened me over such a small time period,I wasn't aware of just how easy this thing could worsen until it had already happened!

It's sad and I just blame myself for everything,I could have done more but I didn't.

You should not blame yourself for living a normal life. We cannot control what other people do or the sounds that are around us.

However, this is maybe too much for someone with H, even wearing hearing protection, and single episodes like this can have a big impact on H (I am talking out of personal experience): "suddenly I felt her hands cover my ears and a firework was let off right beside me." This is how many people worsen very quickly, but it is something accidental you cannot control.

Take also into account that because a sound is considered commonplace and something that happens daily it does not mean it is safe. This is a change of mindset that took me a while to make. Suppose a pan drops on the floor of the kitchen, or you go for a walk in Christmas time and a firecracker goes off like 50 metres away, or someone honks near you when you were just window-shopping. Would people consider these examples a very dangerous thing? Would they give it a second thought after like 15 min? Well, these sounds are common but over time and with repetition they deteriorate hearing. Because these sounds are commonplace it does not mean they are not too loud, specially for people with H.

The approach that helped me most in the past, and that helped me to improve my tolerance was having always sound around at home and having always protection on outside home when I was on the street or driving. Then I would choose places to hang out, restaurants, walk a trail or other activity, and doing that, specially if I was familiar with the place, I would not wear hearing protection. But in a uncontrolled environment when there is the risk of being exposed accidentally to very loud sounds, for me it was best to be on the cautious side (I tested also not wearing hearing protection at all when out on the street, with LDLs of 60 dbs across all frequencies and I do not recommend this to anyone, as it is going to make recovery so much harder, and anxiety may go up a lot as well).

 

[CDNThailand]

Is there any way to check if the hair cells (both inner and outer) are damaged?

Only if you are dead!

 

[Lex]

Only if you are dead!

How can I donate my ears to science? When I die, I want my ears studied. And my auditory cortex too.

 

[Amber]

How can I donate my ears to science? When I die, I want my ears studied. And my auditory cortex too.

There's this in the US:
http://www.tbregistry.org/

 

[CDNThailand]

This^^^ Not sure Sen where you get your thesis from...perhaps from the same group of practitioners that believe TRT is bogus as well, tho intuitively you would think that TRT proponents would be in non damage camp...lol.

If you look hard enough through the esoteric minutia, there is a bit of everything for somebody to believe. Each has to make their choices as to what is true based upon what they believe.

Sen, if you believe that H has its vestiges rooted in neurological aka synaptic damage like I do which countless others believe as well, then I believe you are right. Where I believe you and I part is...you believe because hearing damage maybe the root of H for many (Libermann), therefore TRT can not be effective. That is where I disagree. If a brain is a lawnmower motor thats burns oil because it has a lot of wear...that doesn't mean the same worn motor can't benefit from a fresh spark plug and carb cleaning.

What a perfect anology, just brilliant!

 

[VRZ78]

@Sen how are you are you doing better now ?