Pay Attention to Troublesome Characters Who Downplay the Severity of Hyperacusis

[Contrast]

I lost interest (and hope) a long time ago in the affairs of tinnitus/hearing research. I just made this thread to point out some of the stupidity in academic circles that discuss hyperacusis and painful hearing disorders. In this thread I want to praise people like Bryan Pollard for representing the reality of the problem and following the science shown by Paul Fuchs et al instead of just Jastreboff's method, that until recently dominated everything (academic and clinical). Some people here (not me) are suffering from horrible painful hearing disorders and their life is shot. The clinical world is oblivious to their reality and sometimes doctors say "it's all in your head™" to them. Other times doctors will just begin TRT protocol and suspect psychological illness. In general it seems like the academic world is aware of painful hyperacusis but the clinical world is lagging behind like 20 years or so.

Here's an example of a circa 2019-2020 Audiology student that didn't even hear a peep about hidden hearing loss in his education:

A important thing I want to point out is you can sit through online lectures about hyperacusis from the ATA, Hashir Clinic and other professional societies and there usually is ZERO distinction or even discussion about painful hyperacusis, facial paralysis from noise, middle ear muscle spasms of noise or distressing distortion of hearing. They seem to use the word hyperacusis in a very vague way that is never properly defined. However some of them seem to have an extreme over prioritization of treating hyperacusis as a mental health issue. They also adhere to the Jastreboffian model mostly accept they replace TRT with special CBT with sound therapy. I have nothing against special CBT with sound therapy but I am concerned about patients that notice worsening after doing it.

We have many examples on this forum, and other communities on the internet (Reddit, Discord, Facebook, etc...) of people who have got worse by believing that their hearing is fine and they can go to a rock concert or wear headphones and get much worse.

From what science does know we seem to have three unrelated types of hyperacusis and any research that does not adhere to this model is unsupported by the evidence. Any research that claims to cure all three types with a magic bullet is also unsupported by the evidence.


Below I would like to list the three types of hyperacusis.

Loudness Hyperacusis

Physiological mechanisms of hyperacusis: an update

The science seems to suggest that hearing damage changes encodings in the auditory brain giving one super sensitive overblown hearing.

Pain (cochlear nociceptors and cochlear neuropathy) Hyperacusis

Skip to noxacusis: Physiological mechanisms of hyperacusis: an update

95% of the neurons (nerve cells) in the cochlea are just processing sound information, however an odd type (5%) that resembles pain receptors (nociceptive neurons) elsewhere in the body apparently has evidence of processing painful signals. This was determined because scientist birthed genetically mutated mice that had non functional normal noise detecting neurons but when exposed to overly loud noise (115-120 dB) the mice showed response associated with pain. Suggesting that these neurons are the cochlea's pain detectors.

Pain/paralysis (connection to trigeminal and facial nerves) Hyperacusis

Not much is known about this one and scientist seem to be saying connections between the facial nerves, auditory brain and cochlea exist. We still don't know its etiology and connection to TMJ but many people report high pitch noises triggering TMJ symptoms (including me). People with hyperacusis from noise report facial nerve irritation and people with TMJ report this kind of hyperacusis.

Are Hyperacusis and Trigeminal Neuralgia Connected?

Lesser and unrelated mental health issues that often over prioritize themselves in hyperacusis research:

Misophonia (annoyance of noise)

Misophonia (coined by Dr. Jastreboff) is usually associated with autism spectrum, Tourette's syndrome, anxiety disorders. It does appear to be associated with neurophysiological abnormalities. (no surprise) but we don't have evidence it is tied into the hyperacusis disorders caused by hearing damage. Evidence is somewhat inconclusive that CBT/mindfulness approaches can treat it:

Is Cognitive Therapy a Treatment for Misophonia?

Phonophobia (fear of noise)

PTSD, psychological trauma and some forms of autism is a common one for this. Like all mental health problems it is associated with physiological changes somewhere in the brain. Mental trauma from painful hyperacusis can obviously give a person phonophobia, thus ignorant practitioners will try to inappropriately mix the two issues together. There is no scientific consensus of how behavioral therapies fair against phonophobia, but if we take the benefit of a doubt we can say CBT can help.

Hyperacusis Research vs. the old school static hyperacusis paradigm

The whole point is some academic conversations in the current day meta of hyperacusis research seem to be ignoring current science and instead they have a stereotypical discussion about "hyperacusis, misophonia, phonophobia, CBT, TRT and mental health". It's basically just old school Jastreboffian ideas that are mixed with CBT. They don't seem to talk about hyperacusis worsening, noise damage accumulating or pain from sound. They don't mention the various types of hearing disorders like muffled or distorted hearing. Instead then talk about the issue as if it were entirely mental health related and TRT and CBT can save everyone. Hurray! (Downplaying significance intensifies).

Meanwhile people in touch with reality interested in current science and statistics; such as Bryan Pollard are already showing us useful statistics such as the recovery time of painful hyperacusis as well as the "stereotypical adventure" the average noxacusis sufferer who has to put up with clueless doctors. Including my favorite of TRT tying with conventional sound therapy when treating loudness hyperacusis. Bryan explains that scientist researching the cochlea like Dr. Charles Liberman took his case seriously and radically changed the scientific understanding of hyperacusis and hearing disorders. Science doesn't know everything but it has some clues to what is going on: "cochlear synaptopathy being prominent before hair cell death occurs," "Some kinds of nerve damage causing cochlear nociceptors to drop their noise tolerance threshold," "Auditory demyelination (with permanent nerve damage), auditory brain changes associated with hearing loss" and the mysterious trigeminal nerve crossovers. Outside of the realm of tinnitus and hearing disorders groups promoting mind-body approach do have proper empirical evidence that CBT and behavioral therapy approaches triggers neuroplasticity which can radically alter physical health issues like post stroke patients. The problem is stroke patients do not relate best to people who have physical damage in their ears.

Most of these CBT, TRT, ACT approaches don't recognize other issues such as physical noise damage in the ear and noise accumulation making hyperacusis worse. Furthermore we do not have evidence that Jastreboff's particular model is true and because we see many anecdotal cases on this forum of hyperacusis worsening and his model not recognizing the current hyperacusis subtypes; we have no choice but to label TRT as poorly studied and out of date with current science like the BTA says:

Tinnitus and TRT

Finally, I'd like to conclude we shouldn't be bashing the CBT, neuroplasticity and the mind-body crowd but rather we need to question them on why some of them are not fitting their research in with current otological discoveries. The problem isn't CBT on the side to help various hyperacusis patients. The problem arises when they force an outdated arguably debunked model that doesn't correspond to scientific observation and patients end up getting screwed over because of it. We also need to distinguish CBT from TRT as they are not the same thing. I hope in the long run things work out but we are way too early in this race to know the future.

 

[Orions Pain]

It's really sad when people on forums, most of us with no scientific background, have more insight of this stuff than those getting paid big bucks to basically not know. I don't expect doctors to be perfect, they are human after all, but why are they not even keeping up with basic research? Being a medical provider should go beyond mastering the basics, and for the amount they're paid keeping up with recent research should absolutely be required.

 

[Contrast]

Here's an example of Clown World hallmarks. The US army is oblivious to the existence of hyperacusis. Never mind the subtypes like noxacusis. *clown horn

 

[Orions Pain]

What society sees, vs what I see

 

[Contrast]

Oh yeah. I'm 100% aware that I swapped avoidance and fear hyperacusis for the words misophonia and phonophobia. I just don't want those problems to be labeled hyperacusis. In the world we are living in that could harm hyperacusis research.

 

[Gman]

There are even some outspoken members on this forum, who may have T but have never had any form of hyperacusis and yet ignorantly claim our ears aren't compromised or any weaker than non T or H sufferers.

 

[Nobody19]

When I first got TTTS, I was quite surprised that there is no special interest group that raises awareness for the dangers of loud noise.

There are organizations out there that advocate against things like smoking, alcohol, sunbeds, ... but none for noise.
You also have patient organizations that actively call for stuff to make life for their patients easier, like promoting the use of wheelchair ramps. We don't have an organization like that who points out the danger/annoyance of everyday sounds for us.

For example, such a group could inform employers about acoustics. How can employer reduce the noise in his office as efficiently as possible?

Organizations like ATA and BTA spend some resources on raising awareness for tinnitus, but it's not nearly enough and as far as I know they don't even try to raise awareness for TTTS and hyperacusis.

Maybe Tinnitus Talk can help here?

 

[serendipity1996]

When I first got TTTS, I was quite surprised that there is no special interest group that raises awareness for the dangers of loud noise.

There are organizations out there that advocate against things like smoking, alcohol, sunbeds, ... but none for noise.
You also have patient organizations that actively call for stuff to make life for their patients easier, like promoting the use of wheelchair ramps. We don't have an organization like that who points out the danger/annoyance of everyday sounds for us.

For example, such a group could inform employers about acoustics. How can employer reduce the noise in his office as efficiently as possible?

Organizations like ATA and BTA spend some resources on raising awareness for tinnitus, but it's not nearly enough and as far as I know they don't even try to raise awareness for TTTS and hyperacusis.

Maybe Tinnitus Talk can help here?

There are some organisations where I live (in Scotland) which campaign against unnecessary noise. E.g, http://www.quietscotland.org.uk/

 

[weab00]

Audiologists need to stop relying on the audiogram so heavily. A perfect 250 Hz-8000 Hz audiogram is not at all reflective of cochlear damage, since it can express itself in synaptopathy or high-frequency hearing loss. I was told that my tinnitus/hyperacusis was not caused by cochlear damage since my audiogram was very good, and my AuD gave me a pat on the back. All audiologists care about is if you can understand human speech, and they don't seem to understand that an acoustic trauma is so much more than just hearing loss (reactive tinnitus, dysacusis, pain hyperacusis, trigeminal neuralgia, etc). It's an outdated test and the only reason it continues to be used it because it's easy to test and read.

 

[Nobody19]

There are some organisations where I live (in Scotland) which campaign against unnecessary noise. E.g, http://www.quietscotland.org.uk/

That's great. I wonder if other countries have similar organisations.

 

[Tweedleman]

When I first got TTTS, I was quite surprised that there is no special interest group that raises awareness for the dangers of loud noise.

There are organizations out there that advocate against things like smoking, alcohol, sunbeds, ... but none for noise.
You also have patient organizations that actively call for stuff to make life for their patients easier, like promoting the use of wheelchair ramps. We don't have an organization like that who points out the danger/annoyance of everyday sounds for us.

For example, such a group could inform employers about acoustics. How can employer reduce the noise in his office as efficiently as possible?

Organizations like ATA and BTA spend some resources on raising awareness for tinnitus, but it's not nearly enough and as far as I know they don't even try to raise awareness for TTTS and hyperacusis.

Maybe Tinnitus Talk can help here?

Mind blowing there aren't warnings on concert tickets by law. I mean, we have pictures of dead lungs on cigarette packs here. A single cigarette really isn't going to give you cancer, but a single concert will give you hearing loss.

And it's too bad so many of our music heros are actually total fuckin idiots in this regard, perpetuating machismo crap like, "if it's too loud, you're too old." When asked why he doesn't wear ear protection on stage Dave Grohl said, "because that's not rock'n roll." Most concertgoers still think earplugs aren't necessary. As if the jury is still out on 120+ dB volume being dangerous. Industry has OSHA but the entertainment industry is a free for all in most places. The show that F'd me up so much had no age restrictions either. Mind blowing that there is no regulatory body.

I believe at one time there were radio ads in the UK warning clubbers called, "Plug'em up." But nothing like that even exists where I am.

 

[Nobody19]

I'm from Belgium, and we do have lots of rules here. Concerts have to hand out free plugs, there's a limit on the decibels for clubs and festivals (and a dB meter is required everywhere).

But I don't think these rules are strictly enforced.

 

[frpp]

Mind blowing there aren't warnings on concert tickets by law. I mean, we have pictures of dead lungs on cigarette packs here. A single cigarette really isn't going to give you cancer, but a single concert will give you hearing loss.

And it's too bad so many of our music heros are actually total fuckin idiots in this regard, perpetuating machismo crap like, "if it's too loud, you're too old." When asked why he doesn't wear ear protection on stage Dave Grohl said, "because that's not rock'n roll." Most concertgoers still think earplugs aren't necessary. As if the jury is still out on 120+ dB volume being dangerous. Industry has OSHA but the entertainment industry is a free for all in most places. The show that F'd me up so much had no age restrictions either. Mind blowing that there is no regulatory body.

I believe at one time there were radio ads in the UK warning clubbers called, "Plug'em up." But nothing like that even exists where I am.

Legit. But screw warnings, mandatory hearing protection issued at the door and enforced on both parties with fines or removal. Shows should be capped at 90 dB (still bad but plenty loud enough) with strictly monitored and enforced exponential fines for the musician, producers, and record company, examples $10,000 for 91 dB to each participating party, $50,000 for 92 dB, $150,000 for 93 dB. That Machismo would stop real fast when the first round of fines come in. I worked at a company that was subject to a $100,000 fine if an employee violated this one tiny little rule involving customer privacy and the law would check us for it at least once per day once and in 10 years it only happened twice and it destroyed the monthly $90,000 profit, and people were fired faster than you could blink over it. People's safety comes first!