Can We Stop Treating Hyperacusis as a Single Disease with Universal Advice?

[Horrorpopz]

So, I'm ok you have cured your "severe" hyperacusis 20 years ago with TRT, but can we stop giving the same advice for everybody with hyperacusis like it's a single disease?

It's absurd to give the same advice for pain and loudness hyperacusis.

The huge majority people with pain hyperacusis had no benefit with TRT, which would be OK, but many of them do get worse, TRT seems to help people with loudness hyperacusis but for pain hyperacusis I'm yet to meet a severe case that hasn't got worse after trying it.

This is a tinnitus focused forum and I get it, but if you join the groups of hyperacusis you'll see I'm not talking about personal experience, but seeing the same reports of people saying the same statements: TRT for pain hyperacusis is not only bad, but dangerous.

The same for overprotection, it makes sense that overprotection for loudness hyperacusis is a bad deal (even so nothing indicates the sensitivity gain is permanent), but if you have severe hyperacusis pain you don't have the option to not use it, when a single small sound hurts you for days and a loud sound is catastrophic!

So please, can we stop treating hyperacusis as a single disease with universal advice?

 

[Zugzug]

I agree 100%. I would go a step further - even within loudness hyperacusis, there are different causes, treatments, and gradations. It's actually laughably (if we could handle laughter) ignorant to think that a problem that involves the ear, surrounding nerves, and connections to the brain is a one-size-fits-all.

 

[arctic loon]

Agree 100%.

 

[Autumnly]

While I hope more research will focus on finding medical treatments and ideally a cure for pain-hyperacusis, I'd also like to see more research focusing on how effective sound therapy actually is for people with pain-hyperacusis.

Bryan Pollard said on a recent Tinnitus Talk Podcast episode:

• There was a study earlier this year by Martin Pienkowski that was entitled 'Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis'. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking. In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
• With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don't expect the same outcomes as we do with loudness hyperacusis.

'Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis':

• Over several months, many patients reported that their tinnitus became quieter or easier to bear, and that loud sounds became less aversive. However, it wasn't always clear that these benefits could be attributed to sound therapy rather than to other aspects of treatment, such as counseling or hearing aid use, and not all patients reported benefits.

The same for overprotection, it makes sense that overprotection for loudness hyperacusis is a bad deal (even so nothing indicates the sensitivity gain is permanent), but if you have severe hyperacusis pain you don't have the option to not use it, when a single small sound hurts you for days and a loud sound is catastrophic!

Completely agree. It seems like there are many people who just don't understand that what they consider over-protection is necessary for some people.

 

[Juan]

So, I'm ok you have cured your "severe" hyperacusis 20 years ago with TRT, but can we stop giving the same advice for everybody with hyperacusis like it's a single disease?

It's absurd to give the same advice for pain and loudness hyperacusis.

The huge majority people with pain hyperacusis had no benefit with TRT, which would be OK, but many of them do get worse, TRT seems to help people with loudness hyperacusis but for pain hyperacusis I'm yet to meet a severe case that hasn't got worse after trying it.

This is a tinnitus focused forum and I get it, but if you join the groups of hyperacusis you'll see I'm not talking about personal experience, but seeing the same reports of people saying the same statements: TRT for pain hyperacusis is not only bad, but dangerous.

The same for overprotection, it makes sense that overprotection for loudness hyperacusis is a bad deal (even so nothing indicates the sensitivity gain is permanent), but if you have severe hyperacusis pain you don't have the option to not use it, when a single small sound hurts you for days and a loud sound is catastrophic!

So please, can we stop treating hyperacusis as a single disease with universal advice?

I have had pain hyperacusis for many years, and at a point it was severe, so I can relate to what you're saying. Obviously there isnt the option of not using hearing protection when pain from a single very loud sound can linger for 2 months, at its worst.. and then you get hearing loss just from a one-off episode of accidental noise exposure.

 

[Horrorpopz]

@Autumnly
Thanks for the information you've added autumnly, I do also hope research gonna be our messiah and take us out of this messy situation.

Completely agree. It seems like there are many people who just don't understand that what they consider over-protection is necessary for some people.

I think that hyperacusis is so debilitating that mild cases tend to think they're severe, and can't understand how for some people even double protection (muffs/plugs) aren't enough.

Actually, I struggle so much with double protection that without it my sanity would've been gone a long time ago even being just inside my home.

@Juan

I feel really happy to see you were able to get out from severe scale Juan! Don't get back to it

My pain Hyperacusis is categorized as extreme now I'd guess, I think if I had adopted the double protection way before, my condition wouldn't have get so unbearable, even with protection I can't stand to sounds.

That's why I think there should be better advice available and distinguish of loudness and pain H approaches for better advice.

 

[Juan]

My pain Hyperacusis is categorized as extreme now I'd guess, I think if I had adopted the double protection way before, my condition wouldn't have get so unbearable, even with protection I can't stand to sounds.

I know what you mean... when I was at my worst I could feel sounds going through my head bones and my ears, even with double protection. It was awful.

 

[TheDanishGirl]

Thank you! You are absolutely right and this one-size fits all approach in regards to hyperacusis really needs to STOP!

I so hope there will be more research into pain hyperacusis and potential treatments in the future, but my hope is not very high I'm afraid I'm afraid nothing short of regeneration will fix this and I think we are a considerable number of years away from that.

I wonder what Bryan Pollard exactly means by individually tailored approach. I would love to be able to talk to this guy. He seems to be one of those who as of now, has the best knowledge on this.

 

[Horrorpopz]

@TheDanishGirl

If this thread makes at least one person stop doing this I'll be already so happy

I hope you're totally wrong about the treatments and help comes very fast, living daily hell is exhaustive and torturous, imagine waiting a decade or two makes me wanna puke lol

Best of luck!

 

[Dja]

Agree. I was recommended all kinds of noises but I believe everyone's cause is different which makes the cure different also. I just recently found out that brown noise (being low frequency) is finally recovering my ear to hear certain sounds again. My ear was so distorted by pink noise and such that I couldn't feel the bass in said ear anymore, until I started listening to brown noise.

I can say with a lot of faith that I'm heading towards recovery.

 

[RishRamsey]

I wish I had seen such posts earlier, or a tleast listened to what my body was saying. I didn't - never used ear protection while in malls, restaurants, subway even though my ears were hurting all the time - for 9-10 fucking months! Why, because my girlfriend read somewhere that such normal sounds are required to treat hyperacusis - we are not going to any pub or concert, so malls/ subways should be fine, she said. I am not blaming her - but my own stupidity for continue to do such things. Result - mild hyperacusis and tinnitus way way worse after almost a year. Can't even stand the sounds in my home now

 

[serendipity1996]

Thank you! You are absolutely right and this one-size fits all approach in regards to hyperacusis really needs to STOP!

I so hope there will be more research into pain hyperacusis and potential treatments in the future, but my hope is not very high I'm afraid I'm afraid nothing short of regeneration will fix this and I think we are a considerable number of years away from that.

I wonder what Bryan Pollard exactly means by individually tailored approach. I would love to be able to talk to this guy. He seems to be one of those who as of now, has the best knowledge on this.

https://www.hopkinsmedicine.org/new...e_cells_warn_brain_of_damage_to_the_inner_ear
This article dates from 2015 but nevertheless provides some indication of the direction future treatments for H might take. I agree that regeneration appears to be the ultimate fix although this makes me wonder whether they will eventually develop therapies that aim to minimise the pain-response that is triggered by H (see the last paragraph of the article). I feel that would nonetheless be a step in the right direction and provide relief for a significant portion of sufferers.

 

[serendipity1996]

Also found this article from 2015, an interview with Charles Liberman
https://web.archive.org/web/2015090...rd-in-Understanding-Hyperacusis-with-Pain.htm

From the last paragraph

"When asked about future treatments, Dr. Liberman hopes to see the development of more specific pharmaceutical agents that can block pain fibers and be administered to the cochlea through the eardrum; it is routinely do-able as an outpatient procedure with relatively low risk. He imagines a day when patients with hyperacusis with pain can have a procedure in the office that treats this debilitating condition."

This gives me hope that perhaps we will soon be available to develop effective treatments for pain hyperacusis even if we're not quite there with curative/regenerative treatments of the inner ear. I'm just a layman but it sounds like it's probably more achievable and realistic at least for now in the short term.

 

[xyz]

He imagines a day when patients with hyperacusis with pain can have a procedure in the office that treats this debilitating condition."

Hopefully this day comes sooner rather than later Do you know if there are any drugs in the pipeline that address specifically pain hyperacusis?

 

[serendipity1996]

Hopefully this day comes sooner rather than later Do you know if there are any drugs in the pipeline that address specifically pain hyperacusis?

As of yet there aren't any drugs in the pipeline specifically devised to address pain hyperacusis. I think this is mostly because it's such an under-researched condition so they can't really design therapies for it without knowledge of the underlying mechanisms of it. However, there is an increasing amount of basic research being done to come up with animal models of pain hyperacusis so there is encouraging progress. E.g. https://hearinghealthfoundation.org/mtr/martinelli

On the other hand, since tinnitus + hyperacusis tend to be symptoms of hearing damage there is hope that hair cell/nerve cell regeneration could be the answer, e.g FX-322 or Hough pill. If we're looking to combat the pain, then treatments for neuropathy could yield positive results.

 

[Coffeebean]

I would tend to agree that there are various severities of hyperacusis and that one should be careful in making blanket statements about cures that would allegedly have a 100% success rate. Unfortunately, people's bodies and minds can be very different from one another, and within the medical world there are only very limited treatments/medications of which you can truly say that they are effective for everyone. Whatever the condition and the treatment is, some people might experience side-effects, some might show full improvement, some might show limited improvement, and some might not improve at all.

However, this being said, I do believe that the picture which is often painted about hyperacusis on internet forums is very one-sided and not an accurate reflection of reality.

Most people who experience hyperacusis can make significant improvements by using a slow, structured, deliberate re-exposure to sound in order to desensitize the auditory system, and by working on anxieties related to sound that might have developed due to the hyperacusis. I intentionally say 'signiificant improvement' as I do not want to imply that this always means an entire recovery. Some sound sensitivity might remain in spite of treatment.

There is a small percentage of hyperacusis patients who have not (yet) had any noticeable improvement in their condition. This could be because they have only recently gotten the condition, because of other underlying health conditions, or because of lack of access to treatment or lack of knowledge in this regard. Often, the response to sound sensitivity is to over-protect the ears, which often makes symptoms much worse in the long run as the brain will 'turn up' the sound sensitivity in the absence of stimuli.

The thing is, most of the internet forums are full of people who are still very much struggling with this conditions. The majority of people that improve no longer hang around , especially because constantly focussing on the symptoms only brings them to the forefront of your attention and can (re-)trigger feelings of depression and anxiety. One of the first tips you will get from an audiologist is to stay of these forums!

So, on the one hand I am in favour of making clear that there is no 'one size fits all' cure for hyperacusis and I believe that we should acknowledge that it is not a condition which is easily treatable for everyone. On the other hand, I also believe that people need to be informed that for the vast majority, hyperacusis is very treatable. And I am not basing this merely on my own experience, there is a significant amount of research which supports hyperacusis treatment through sound therapy (even though, in general, research on hyperacusis is somewhat limited compared to other conditions).

If you do not want to take my word for it, contact a qualified audiologist who specialized in tinnitus/hyperacusis and he will likely tell you the same thing.

I hope my response above does not offend, because that is certainly not my intention. I just want to provide a more common sense view to counter the doom and gloom often found online when reading about this condition.

Simply because of the nature of hyperacusis, it can be very tempting to curl up in a corner, feel depressed, convince yourself that nothing can be done, and resort to earplugs. I know, because I have experienced this myself. I am glad to have been able to get out of this self-defeatist mindset, and I am doing perfectly OK now.

 

[Autumnly]

However, this being said, I do believe that the picture which is often painted about hyperacusis on internet forums is very one-sided and not an accurate reflection of reality.

Chat-Hyperacusis is pro sound therapy and "most of us can get better" (at least this is how I remember it) and this thread on here shows that hyperacusis patients, who fall outside the norm, didn't feel represented on here either. Usually, discussions about hyperacusis are one-sided in the sense that they focus on the majority that gets better and ignore more severe cases. Most audiology sites say hyperacusis can be treated, there are many hyperacusis success stories, the threads I read on chat hyperacusis were also always very supportive and encouraging and so on.

There is a small percentage of hyperacusis patients who have not (yet) had any noticeable improvement in their condition. This could be because they have only recently gotten the condition, because of other underlying health conditions, or because of lack of access to treatment or lack of knowledge in this regard. Often, the response to sound sensitivity is to over-protect the ears, which often makes symptoms much worse in the long run as the brain will 'turn up' the sound sensitivity in the absence of stimuli.

But you're not saying "or because for some, it just doesn't get better" or "for some, sound therapy doesn't work" or "some need to be more careful of setbacks". You're also talking about over-protection and ignoring patients who genuinely need to over-protect (for some time at least).

there is a significant amount of research which supports hyperacusis treatment through sound therapy (even though, in general, research on hyperacusis is somewhat limited compared to other conditions).

Bryan Pollard said on a recent Tinnitus Talk Podcast episode:

• There was a study earlier this year by Martin Pienkowski that was entitled 'Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis'. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
• In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.

Also, I bet many severe hyperacusis patients have tried sound therapy. So it's not just about whether it works in general or not but it's important to remember that it doesn't work for everyone - which is what this thread is about, general advice not working for everyone.

If you do not want to take my word for it, contact a qualified audiologist who specialized in tinnitus/hyperacusis and he will likely tell you the same thing.

Clinical advice rarely comprehends setbacks or the risk of making the condition worse. Advice such as "everyday noise can't harm you" can have dire consequences for some and lead to significant worsenings.

Simply because of the nature of hyperacusis, it can be very tempting to curl up in a corner, feel depressed, convince yourself that nothing can be done, and resort to earplugs.

For severe sufferers, this is sometimes the only thing they can do to prevent further setbacks. Also, saying "nothing can be done" is the reality for some sufferers, unfortunately.

for the vast majority, hyperacusis is very treatable.

Do you have a source for that?

I just want to provide a more common sense view to counter the doom and gloom often found online when reading about this condition.

This thread was meant for hyperacusis patients where the general advice doesn't fit and didn't help. I'm not sure how that's doom and gloom. People were just discussing that there is an obvious minority (?) where the advice you shared doesn't apply. Where else should hyperacusis patients, that don't fall into the "norm", talk about their experiences?

 

[Orions Pain]

Chat-Hyperacusis is pro sound therapy and "most of us can get better" (at least this is how I remember it) and this thread on here shows that hyperacusis patients, who fall outside the norm, didn't feel represented on here either. Usually, discussions about hyperacusis are one-sided in the sense that they focus on the majority that gets better and ignore more severe cases. Most audiology sites say hyperacusis can be treated, there are many hyperacusis success stories, the threads I read on chat hyperacusis were also always very supportive and encouraging and so on.

But you're not saying "or because for some, it just doesn't get better" or "for some, sound therapy doesn't work" or "some need to be more careful of setbacks". You're also talking about over-protection and ignoring patients who genuinely need to over-protect (for some time at least).

Bryan Pollard said on a recent Tinnitus Talk Podcast episode:

• There was a study earlier this year by Martin Pienkowski that was entitled 'Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis'. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
• In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.

Also, I bet many severe hyperacusis patients have tried sound therapy. So it's not just about whether it works in general or not but it's important to remember that it doesn't work for everyone - which is what this thread is about, general advice not working for everyone.

Clinical advice rarely comprehends setbacks or the risk of making the condition worse. Advice such as "everyday noise can't harm you" can have dire consequences for some and lead to significant worsenings.

For severe sufferers, this is sometimes the only thing they can do to prevent further setbacks. Also, saying "nothing can be done" is the reality for some sufferers, unfortunately.

Do you have a source for that?

This thread was meant for hyperacusis patients where the general advice doesn't fit and didn't help. I'm not sure how that's doom and gloom. People were just discussing that there is an obvious minority (?) where the advice you shared doesn't apply. Where else should hyperacusis patients, that don't fall into the "norm", talk about their experiences?

Always wondered why more people weren't at least a bit sketched out about how heavily hyperacusis success stories seem to push TRT on that website.

I'm sure it has its benefits for some but it always just seemed like a giant marketing TRT advertisement. It's like when you open the reviews for a product and all of them are glowing 5 Star reviews from obvious fake profiles made by the manufacturer to push their product.

Not saying those stories/ people aren't real, but definitely agree that it shouldn't be the default treatment for every hyperacusis patient.

 

[xyz]

And I am not basing this merely on my own experience, there is a significant amount of research which supports hyperacusis treatment through sound therapy (even though, in general, research on hyperacusis is somewhat limited compared to other conditions).

Please point me to the study which established efficacy for a pain hyperacusis treatment. I will book it immediately.

 

[Juan]

This thread was meant for hyperacusis patients where the general advice doesn't fit and didn't help. I'm not sure how that's doom and gloom. People were just discussing that there is an obvious minority (?) where the advice you shared doesn't apply. Where else should hyperacusis patients, that don't fall into the "norm", talk about their experiences?

I agree with you. I have tried noise therapy, I also went to a TRT practitioner (listed by Jastreboff, there is a list somewhere). I did CBT briefly. Tried different meds. I used the "take the hits approach" and would go out without hearing protection (terrible headaches, spikes in hyperacusis and tinnitus, awful). Etc etc

Years and years of doctors (ENT, TMJ, neurologists, rheumathologist etc etc etc). After all that I said to myself: "whatever comes is OK". It's the only practical approach to a problem with no known solution.

 

[serendipity1996]

Not being funny but how is someone supposed to cope with sound therapy if artificial audio sources are one of the few triggers for their pain hyperacusis - also triggering trigeminal and face symptoms etc.

 

[serendipity1996]

Hope my comment above doesn't come across as 'snarky' - it's clear that sound therapy can definitely be beneficial for some and has its place but for many people with painful hyperacusis there's a glaring need for better treatment options.

 

[Juan]

Not being funny but how is someone supposed to cope with sound therapy if artificial audio sources are one of the few triggers for their pain hyperacusis - also triggering trigeminal and face symptoms etc.

Adjusting the volume according to the amount of sound you can tolerate..

 

[serendipity1996]

Adjusting the volume according to the amount of sound you can tolerate..

That's my point - It's not really to with loudness though for me - I can watch stuff at volume 8/100 on my laptop and still get TTTS symptoms. Even at a volume at which I can barely make out the words. It's clear hyperacusis comes in many different forms...

 

[Michael Leigh]

Adjusting the volume according to the amount of sound you can tolerate..

Exactly @Juan There is a right way to use white noise generators and a wrong way. A lot of people that use these devises haven't been advised how to use them correctly. When this is the case they can irritate the auditory system spiking the tinnitus. When correctly used they can often treat hyperacusis making it less severe over time. This type of treatment does take time, usually 12 to 24 months. Some people give up too quickly and don't give WNG a fair chance. One must also consider this treatment may require regular counselling with an Audiologist, especially if the person has had the hyperacusis for some time a year or more.

Michael

 

[Autumnly]

A lot of people that use these devises haven't been advised how to use them correctly. When this is the case they can irritate the auditory system spiking the tinnitus.

You can also be advised correctly how to use white noise generators and still experience worsenings.

 

[Juan]

You can also be advised correctly how to use white noise generators and still experience worsenings.

That's so true.

 

[Juan]

That's my point - It's not really to with loudness though for me - I can watch stuff at volume 8/100 on my laptop and still get TTTS symptoms. Even at a volume at which I can barely make out the words. It's clear hyperacusis comes in many different forms...

That can also be temporary. Maybe you don't feel well for a while but then the symptoms fade.

 

[serendipity1996]

That can also be temporary. Maybe you don't feel well for a while but then the symptoms fade.

To be fair things do seem to be improving... 3 months ago I had burning ear pain. Now I don't really experience ear symptoms and haven't for the past six weeks... just these annoying facial symptoms which come and go and are triggered by certain sounds like I said. It's not constant and more intermittent so that gives me hope that it will eventually fade.

 

[serendipity1996]

@Michael Leigh why do you keep stalking my posts and rating them funny when they are showing genuine distress....? Jesus... just stop.