Challenging the Current Terminology of Hyperacusis

This post is something I have been giving a lot of thought to as of late following many conversations with @serendipity1996, who has been a great sounding board for some of my own theories, and was finally prompted by @FGG asking a fairly common question I see people with this condition ask: can you describe your pain?

This post is also a lean-in to another post I'm drafting about why I think FX-322 may help many of us here, and I should be posting that in the next few days.

The aim of this post is to simply start a conversation about the current dichotomy between pain and loudness hyperacusis.

Disclaimers: this post is not going to be very technical nature, and is limited mostly to determining the difference, if any, between loudness and pain hyperacusis. A lot of what I'm about to write is personal and anecdotal and mainly just me thinking out loud, but I hope it encourages a conversation about the language we use when it comes to hyperacusis.

With that out of the way, I think we should consider the possibility, particularly in the absence of any empirical evidence comparing patients with loudness and pain hyperacusis (until last month), that pain and loudness hyperacusis should be considered together as a spectrum rather than individual subtypes, while other subtypes, such as fear or annoyance hyperacusis, should be considered as symptoms of hyperacusis rather than subtypes of their own.

I start by sharing the definitions of all four, as found on hyperacusisresearch.org:

• Loudness hyperacusis is when moderately intense sounds are judged to be very loud compared with what a person with normal hearing would perceive.
• Annoyance hyperacusis is a negative emotional reaction to sounds.
• Fear hyperacusis is an aversive response to sounds that results in an anticipatory response and avoidance behavior.
• Pain hyperacusis is when a person experiences pain at much lower sound levels than listeners with normal hearing (typically around 120 dB SPL)

Under these definitions, loudness hyperacusis suggests a condition where the world experienced by a sufferer is something akin to a rock concert. The argument is that everything sounds loud, at least relatively to how it did before, but there is no discomfort or pain.

Here is where I take issue with this definition. On a personal note, my life was very loud before hyperacusis. I went to rock concerts, listened to music through speakers, wore headphones often, commuted every day on loud trains, went to sports events etc. My life was generally very loud and I never had a problem with it. However, since I developed hyperacusis, I experience pain and/or discomfort from much quieter sounds, a physiological response which often leads to an emotional response as well (fear/annoyance) - hence why I believe these two latter subtypes are symptoms, not their own conditions, but I digress.

My main point is this: given that I, like many others, had no issue in dealing with loud sounds before we had hyperacusis, why should we suddenly have an issue with other things suddenly sounding louder than normal?

"Oh well, you must have pain hyperacusis, not loudness hyperacusis then".

Not so fast. You're right, I do have pain hyperacusis, but that doesn't counter my argument, which is: is loudness hyperacusis pathologically different from pain hyperacusis?

This may sound like a crazy suggestion to make, but I think it is worth one considering, and I urge people who consider themselves as having loudness hyperacusis to ask themselves this question: do sounds sound louder, or do they feel louder? Personally speaking, I know that the answer to this question is the latter. There are sounds, such as water faucets or squeaky door handles, that cause me to grimace in pain, but the discomfort typically ends as soon as the sound is over. I may also sometimes experience delayed/prolonged jaw/ear pain/headaches as a result of these sounds, but there is some strong evidence to suggest that this could be related to a middle-ear pathology stemming from an overactive auditory system, in response to pain hyperacusis (which has its own pathology). But the point is this: I know that, objectively speaking, the sound isn't any louder than it was before. It's just causing me an uncomfortable physiological reaction.

At this point, I would like to note Charles Liberman's definition of annoyance hyperacusis in an interview he recently gave:

"I believe that pain hyperacusis, which can be very long-lasting, is fundamentally different from annoyance hyperacusis, where the discomfort ends when the stimulus ends, and it will be difficult to distinguish these two types of hyperacusis in an animal model"

What I find interesting is that Liberman's definition of annoyance hyperacusis clearly digresses from the one found on the hyperacusisresearch website. One describes an emotional reaction, while Liberman describes a physiological reaction. While I fully respect Liberman and his work, I do wonder if what he describes as annoyance hyperacusis is what actually many on here experience as loudness hyperacusis: discomfort from sound which ends when the stimulus ends.

"But isn't that the same, or a type of pain hyperacusis?"

It may well be, and if you look at Liberman's quote again, he leaves behind another clue: "pain hyperacusis ... can be very long-lasting". In other words, there is a suggestion that although pain hyperacusis can be long lasting, it doesn't have to be, meaning it can be very brief, just like loudness hyperacusis - or what Charles Liberman describes as "annoyance hyperacusis". In fact, given Liberman said this at interview, it wouldn't surprise me if he misspoke and meant loudness hyperacusis as opposed to annoyance hyperacusis.

On this note, I would like to share an anecdotal story. I said earlier in this post that my life was always loud pre-hyperacusis and I never had an issue with things being loud. This is not entirely true, as I can recall two abnormally loud events that caused me physical discomfort. One was an airshow, where I experienced real pain from fighter jet engines hovering over at a low altitude, and another was a rock concert where the audio engineer was clearly breaking the law. I recall my late father getting out his dB meter at said rock concert and it was showing peaks above 120dB - which we know is the threshold for pain for people with normal ears - and us both saying that it was unbearably loud (as opposed to painful), which funnily enough, is what most people say when they describe their loudness hyperacusis. But on reflection, it wasn't unbearably loud: it was outright uncomfortable and painful.

In other words, under the terms defined for pain hyperacusis, one could argue that everyone and anyone has pain hyperacusis, just at different thresholds (for most at 120dB SPL).

The interesting thing is that on both occasions, as soon as I left the airshow/rock concert, the pain/discomfort ended, in line with what Liberman would call annoyance hyperacusis (but which I believe most people experience as "loudness" hyperacusis). And yet under the current terminology, this would actually fall under "pain" hyperacusis.

So the waters are muddied. Interestingly, a paper only recently just came out to suggest that this indeed may be the case. The conclusion of the study reads as follows:

"Although this study provides little evidence that loudness and pain hyperacusis are pathophysiologically distinct conditions, our findings indicate that a pain-predominant phenotype may be a meaningful prognostic marker in patients with hyperacusis."

I for one agree with this conclusion. I do think loudness and pain hyperacusis may well indeed be the same thing and have simply been used to make distinctions between severity of pain and how long-lasting that pain is.

How this revelation would fit into our current models of hyperacusis remains to be seen. If true, the challenge here would be to develop or identify a model that demonstrates both conditions as having the same pathology. We may already have that with the ATP leakage type II afferent model or the increased pre-synaptic ribbon model, but until now, the former has been confined to explaining pain hyperacusis only and loudness hyperacusis, under its current definition, has been disregarded as being a potential symptom of this pathology entirely.

One model that has been used in favour of loudness hyperacusis is the central gain model which, at least to my understanding, is supported by showing changes in ABR (auditory brainstem response) wave ratios, but it is unclear to me as to whether ABR wave ratio changes can be true indicators of loudness hyperacusis.

There was one study that showed a correlation between reduced LDLs and greater amplitude of ABR Wave V in tinnitus patients (presumably in response to a reduced Wave I coming from the cochlea), suggesting then that neural gain had increased in the midbrain to compensate for reduce output from the cochlea. The study goes on to say that "ABR wave and the perceived loudness of sounds are increased in such patients". I think this is a brilliant piece of research, but the issue I have, for reasons I think I have now made clear, is that they have conflated and/or equated a reduced LDL to an "increase in perceived loudness", and I must question as to whether these two things are, objectively speaking, one and the same thing, as I would argue that the former deals with discomfort/pain, while the latter deals with perception of volume.

Looking forward to everyone else's thoughts on this!

 

My own history here (trying to describe it as best as I can):

A little more than 2 years ago, I got sudden bilateral hearing loss after taking high dose Azithromycin.

Initially, my tinnitus was mild but ramped up quickly to severe before settling to moderate, where it has been since.

Right away, I had dysacusis (still do but less severe) and what I would call loudness hyperacusis. Most sounds were very loud but high frequencies on the edge of my normal hearing were extremely loud. They didn't register as pain per se but were annoying and made my heart rate shoot up.

About maybe a month (?) later, I suddenly developed sun burn type pain inside my ear. It also had an electro-shock quality and I could almost feel a buzzing quality. It was present nearly 24/7 and it did not radiate outside my ear. It would be a bit worse with sound but like I said, it was always there. I was already protecting a bit at the time when it happened due to what I'm calling my loudness hyperacusis still being there.

Also, I had very reactive tinnitus at this point. I think in my case, this was hearing some parts of complex sound louder than others, i.e. my refrigerator now had a high pitched tone but I think it was always part of the sound it made but that one tone got amplified. Part of the reason I believe this is when I would test my music hearing with CDs I would actually hear the CD laser reader noise much louder than any of the music.

After maybe 8-12 months (?), the reactive tinnitus got 90% better but the sunburn/electro shock pain went away completely after a month on Magnesium (the only useful advice my otologist ever gave me).

Anyway, I had 2 years free of hyperacusis symptoms until I exposed just my left ear to a loud speaker to test my music hearing (in particular with low frequencies).

Immediately both my ears fluttered for a bit and now I have some sort of pain hyperacusis.

This is how I would describe my current pain: whether I am exposed to noise or not, I have very sore muscles around my whole face. Cheeks, jaw and even above eyes. It seems though that it's slightly worse following noise, but a bit delayed.

In addition I get this burning, tingling and even menthol feeling around my ears and jaw.

I also get needle prick feelings on both pinna and they feel "hot" to me (anyone else have this?).

Nothing is deep or stabbing but I do get an intermittent light fluttering feeling and a sense/feeling that there is liquid behind both ear drums.

Both my ears also felt full but that part at least is much better on Magnesium.

It can be uncomfortable enough to wake me up from sleep and sometimes weirdly I can feel it in my scalp or ventral neck.

I feel like mine is not classic noxacusis because my ears are equally affected and my phone speaker was only next to my left ear. My suspicion is this is some version of tensor tympani dysfunction. I think my tight muscles are perhaps irritating my trigeminal nerve.

Another thought is that the reason it's radiating to weird places is that I have underlying cervical spine issues and maybe the secondary facial muscle tightness is causing some additional nerve root irritability.

Anyway, I wanted to make the point that I have had pain in my ears at two different points and they feel extremely different. The first I believe was primarily cochlear and more recently I believe it to be more middle ear.

 

We've mulled this over quite a lot and I think it's a very worthy topic of discussion. On the one hand, I do think it is instructive to stratify sub-types when it comes to informing treatment such as sound therapy. E.g. those who experience prolonged pain are likely to worsen in response to sound therapy. Also, a brief note on fear hyperacusis - surely this would be classed as phonophobia?

On the other hand, I think there's a tendency to frame them as totally separate entities which I think sort of obscures the reality of this condition. It's interesting that the majority of people with noxacusis also have loudness hyperacusis, according to Bryan Pollard - and let's not forget that the vast majority will also have tinnitus (I have see figures of 85-90%). I wouldn't be surprised if a substantial number also experience distortions, reactive tinnitus, and dysacusis. So, all symptoms of the same underlying condition - hearing loss.

It's interesting if you look at the way certain researchers talk about hyperacusis too - Liberman seems to firmly believe that they are two "fundamentally different" condition whereas Paul Fuchs has spoken about there being an initial progression from sounds sounding too loud or provoking discomfort to eventually causing pain. I also agree that there's a fair bit of ambiguity surrounding the term 'loudness' - as you said, it's more that it *feels* louder rather than objectively *sounding* louder. I don't necessarily even perceive the whole world as 'having the volume turned up' (this sort of description seems pretty commonplace on mainstream websites about hyperacusis). I think that's a pretty vague term that doesn't really capture the reality of this condition (at least for me anyway). It's more that I'll reach a discomfort threshold far more easily and certain sounds trigger this more than others. In fact, the types of sounds that are liable to trigger my pain symptoms e.g artificial audio, are also those where the my 'loudness' discomfort level is lower.

One thing I do wonder is how do we account for the prolonged and often delayed nature of the pain that so often features in noxacusis? There could also be middle-ear and trigeminal pathology at play here but perhaps this is also down to the type 2 fibers - they resemble C fibers elsewhere in the body which are responsible for transmitting slow and lasting pain.

 

Hold up, does classic noxacusis usually affect the ears differently? I thought most people had bilateral noxacusis that was the same on both sides.

 

What if hyperacusis was really just a term jastreboffites came up with like with misophonia where they just lumped in a bunch of real ear problems together and just gave it a shrinkological term "hyperacusis" so they could blame their patients for not getting better over things like "stress" and give patients the illusion of actually healing with terms like "setbacks" for example.

If it wasn't for Jastreboff ruining the entirety of otology I'm sure we would have much better, more specific terminology to detail our etiologies.

It makes perfect sense when you see TRT shills denounce things like "reactive tinnitus" because it doesn't fit their agenda that TRT is the magical cure for everything, or that it can somehow improve hyperacusis without improving tinnitus.

What about those ENTs who debate over whether or not Meniere's patients experience "recruitment" or "hyperacusis", it then confuses us on whether or not the patient is experiencing a hearing loss or a hearing gain. And then there are some supposed cochlear hydrops cases yet they were cured by a tetonomoty.

I don't think of my problems in terms of hyperacusis anymore because the medical literature is shit, the TRT dogma is everywhere, I think we should really radically change our terminology in a way to challenge the dogma that proliferates otology.
Because of my middle ear issues I was considering taking a trip to the Silverstein Institute but they still use the extremely outdated hyperacusis questionnaire, he doesn't differentiate between types or "hyperacusis" and doesn't bother to ask the right questions to his patients either.

There's also the weird problem of noxacusis as far fewer people then I thought of actually suffer from pains after sound that linger on for days and weeks. Research is very poor on that one. I also don't think it's a coincidence that many sufferers of "noxacusis" have trigeminal neuralgia or facial paralysis, TMJD, MEM and visual snow. Or pressure changes and aural fullness. There's some clear mechanical aspect to pain hyperacusis that desperately needs to be dissected. I know of some people who have had noxacusis and other grey area etiologies like dysacusis totally cured through TMJ treatment, it changed their lives. Or with things like Lidocaine and Bonain's solution. I think we need to track down patients from long ago who had our etiologies, see if they had surgeries or tried supplements/drugs/treatments, and see how they've held up long term. A lot of them aren't invested in the semantics as we are.

We are in the dark ages. Jastreboff and the sound therapy dogma has caused irreparable damage. We need to radically and specifically define our etiologies, especially to the medical world, to make up for the damage done, so that they know the right questions to ask.

 

I think it would depend on your noise exposure, no?

I had a small phone speaker held up to my left ear. It wasn't very loud on my right.

 

Just to add, I also used to experience the needle prick feelings on the outside of my ears, like around the cartilage and pinna. I also used to experience a sensation of heat from time to time on the outside of my ears too! Mostly gone away for now.

 

How long did it take to go away?

 

FGG has pretty much described VERBATIM my experience with hyperacusis / noxacusis / dysacusis when I developed right-sided tinnitus/hearing loss two years ago from an acoustic trauma. The detailed description from her experience is chillingly similar.

I still have intermittent issues with certain loud sounds, and certain frequencies. When my issues flare up, usually the reactive tinnitus, and described sensations also flare up in tandem and stay that way for a period of days to weeks.

For the record, I experience an extremely mild left sided tinnitus, and on the right, a much more loud/noisy tinnitus plus hyperacusis symptoms described above.

I plan to follow this discussion, and am happy to offer input if requested.

 

I can't pinpoint an exact moment and it was more of an intermittent thing but I would say gradually over the course of 7-8 months maybe? It tended to subside once my other symptoms died down too!

 

That was quite the write up, but I almost completely disagree. In fact, after reading this, I am actually more convinced that the pathologies are different.

As one of the rare people with really severe loudness/annoyance hyperacusis and zero noxacusis symptoms, I genuinely don't think most people understand what "annoyance" hyperacusis actually is. Here's the best way I would describe it. You know when someone is really pissing you off, like to the point where you want to beat a punching bag mercilessly for an hour straight and you breath heavily and can't think or concentrate? The combination of severe loudness and annoyance hyperacusis is like a really simple, neutral, low-level noise causing that feeling directly (on top of the volume sounding much louder). It's not "ah, I'm in pain, I hate my life. I'm annoyed." It's a direct stimulation of the amygdala. It literally feels like the sound is tickling the amygdala and making it go nuts directly. It has nothing to do with outlook or pain.

As an aside, and this isn't directed at you (or anyone specifically), but I have noticed that there's a bit of an "elite sufferer's club" vibe when it comes to noxacusis. The reason is because most people don't actually have an understanding of what loudness/annoyance hyperacusis really is. Keep in mind that I used to suffer from pain so bad that it (also) gave me suicidal thoughts. I had pain, daily, for years. My whole life was misery and pain. My loudness hyperacusis, which causes zero stabbing pain (I do get other pain from my own facial muscles) is 100x more traumatic and debilitating. Please don't read that as me saying loudness hyperacusis is always worse, as it most certainly is not. In fact, noxacusis is usually worse and most of the really horrific cases are noxacusis.

There's an absurd amount of ignorance surrounding loudness hyperacusis. Yes, noises are actually much louder in volume. They don't "feel" louder (whatever the hell that means). They overstimulate people to the point where it's like having a mini-seizure. And once stimulated, we stay stimulated. If I went into public and tried my absolute hardest to pretend like I had no health problems, I wouldn't be able to control it. I would probably physically jump from my brain being so overstimulated by sounds.

Where I do agree with you is that these 4 subtypes are certainly not independent. For example, loudness hyperacusis is really loudness/annoyance hyperacusis. Just "annoyance hyperacusis" is misophonia. I would also say that "fear hyperacusis" likely can be absorbed into loudness. If it exists without loudness or pain, it also absorbs into misophonia.

Another myth is that loudness/annoyance hyperacusis is "short-lasting." What actually happens is the brain gets revved up and stays that way for long periods of time after the stimulation is gone. To go back to my analogy about the punching bag, if someone pisses us off to that level, do we instantly forget about it when we leave the room? Not only that, the prolonged overstimulation causes setbacks and makes the condition worse for a while (sometimes permanently). Moreover, when LDLs are in the 10 dB range, every single sound revs it up, even with ear protection on 24/7.

As an aside (OP didn't mean it this way), I know there's resentment in the noxacusis community over loudness hyperacusis. Is it because there are a lot of posers? Or people who read "annoyance" and think they have it? Is it because the pathology correlates with higher LDLs? Is it because it's a very obvious brain symptom of hearing loss and people are tired of being told that their hearing disorder is in their head? Or the spirit of maladaptive neuroplasticity is too confusing and people lose sight of the main goal, which is to heal the inner ear?

I'm not sure, but I do know there is real resentment. I do not wish to share details, but I have seen it.

To respond to the original discussion, of course loudness and pain hyperacusis are different. People can have both, but it's more like someone having migraines and epilepsy than it is "seizures are just like feeling distraught about a headache."

I'm sorry if this is harsh or off-putting. I know that no harm was intended or anything. I just feel like everywhere I go, I see people minimizing loudness hyperacusis because they don't know what it is.

 

It's not actually vague. I also don't think it's hard to picture a pencil falling off the table being as loud as a hammer and making one super distressed. If it feels vague or hard to describe, it's certainly not loudness hyperacusis. The world is very clearly amped up in volume. Like objectively, the volume is much, much louder. Moreover, the brain reacts to sounds with significantly more annoyance than it did to noises that it used to think were loud.

 

@Aaron91 and @serendipity1996:

I want to say that I think you two are very bright and good-hearted people. I don't regret what I wrote, but I regret that I took a lot of it out on you.

The misconceptions of loudness/annoyance hyperacusis, which often go together, is something that has bothered me for a long time. I considered making a post about it. I should have done this instead.

I just think it's a little hypocritical to say sounds "feel" loud, but don't "sound" louder. That's basically the same thing as an ENT saying that someone with pain hyperacusis "feels" like they should be in pain, but aren't actually in pain.

I also think that annoyance, as a symptom of hyperacusis, is perhaps a victim of poor marketing -- not dissimilar from how "Chronic Fatigue Syndrome" (which is a serious condition) attracts vagueness because everyone experiences fatigue.

All I can say is annoyance/overstimulation as a presenting symptom of hyperacusis is very different from "I hate my medical problem. I'm annoyed." That doesn't mean it's necessarily more or less suffering than someone else, but it's different.

I know where it all comes from. All of the Jastreboff talk about painting rational fears of sounds as irrational fears makes people want to run from the hills from the parts of hyperacusis that are direct limbic system responses. It's real though.

I support the same efforts that noxacusis sufferers do. I agree that research should be focused on repairing damaged ears. So why does everyone want to absorb loudness hyperacusis? I guess it's a game of numbers. Maybe statistically, there are way more bad cases of pain hyperacusis than loudness? I'm not sure.

It's extremely isolating, to be honest. I suspect that my highly unique cause of hyperacusis is the reason why I'm breaking the mold. Maybe noise injuries rarely result in severe loudness hyperacusis only? Maybe it's caused by things like ototoxicity, diseases, and other pathologies? Maybe the general assumption that noise injuries are a spectrum is more true than other causes?

 

Are you talking about my initial pain symptoms 2 years ago or what I have now?

How long before you noticed improvements?

 

@FGG, I had that prickly sensation on my ear cartilage at some point. I always felt like it was a feather from my pillow poking me but when I'd graze my hand over it, nothing was there.

 

@Aaron91, when you say sound "feels" louder but doesn't necessarily sound louder, can you clarify? Do you mean like sound is putting pressure on your ear drum?

My pain is mainly the delayed sunburn sensation which varies in intensity, and loudness hyperacusis (however we define that). If I listen to music/computer audio, I am guaranteed delayed burning pain which lasts anywhere from a few days to weeks.

I can both FEEL certain sounds on my ear, and they also sound much louder. Like running tap water doesn't sound 10x louder in volume, but it's almost like a physical sensation of pressure from the sound both in my brain and on my ear.

Then there are sounds that are already loud/sharp: certain birds chirping, microwave beeps, the beep of scanning a bus pass a garbage truck passing by - they actually sound louder in volume.

I'm assuming my loudness hyperacusis isn't on the severe end because dropping a pen doesn't sound like an explosion to me. It's a bit sharper, but volume wise about the same. After my second acoustic trauma, it was almost like I could feel my footsteps on the ground in my ears and even my volume on 2 bars on a TV (hardly audible) was very very uncomfortable. I couldn't speak to my mom, who has a very soft voice by nature (even though these sounds weren't causing "pain").

@Zugzug, I agree, loudness hyperacusis can be very debilitating in its' own, even in a mild to moderate form. When my hyperacusis was still pretty "mild", I attempted to go to a museum where there was an open concept food court area. The the roar of people talking, the music, the plates banging around and overall noise made me feel like I was going to pass out. It was like hearing everything at once and like your ears are attempting to isolate every sound, and the "roar" of it was like being next to a plane taking off. Another time, I was walking to work/speaking to a coworker and a loud truck happened to be passing by and her trying to yell over it was just too much, I actually wanted to cry.

A good description of what loudness hyperacusis feels like to me, is eating the crunchiest chips you can find with ear plugs in. It feels like the sound is digging into your brain.

 

Thank you for the kind comments. I think you've touched on a very salient point actually, regarding how we talk about 'annoyance' hyperacusis. The term 'annoyance' doesn't really do justice to it, I imagine. Annoyance has unfortunately trivial connotations - it conjures up how you'd feel after, say, spilling wine on your carpet or something. It also has a bit of a victim-blaming vibe to it - implying that it's an emotional reaction that is easily within your control or is easy to rein in.

It seems like a more accurate description would be 'overstimulation', as you said, as that more clearly shows that it's a serious issue of the way the brain/ear processes these sounds and is not just somebody feeling 'ticked off' about a sound. For instance, I understand that in autism, sensory overstimulation can lead to something called meltdowns and shutdowns which can be extremely unpleasant and exhausting from what I have read, where the brain almost short-circuits. (I have ADHD which can also be associated with sensory issues apparently, although I don't personally experience this aside from my ear issues, which I consider separate).

 

We've had tinnitus about the same length of time. My initial pain symptoms were similar and I noticed improvements in about the same timeframe - a year.

I had a more recent setback in June/July 2020, where I have similar symptoms as well. Most of it started to clear up in October/November.

They've generally resolved as of typing this, although every once in a while there are minor flare ups of the muscle pain, nerve pain, clogged feeling, for example, or reactivity to certain sounds. For example, someone using a leaf blower at the neighbors (not too loud inside my house) caused a bunch of reactivity that day to other sounds that eventually settled a few days later.

I also take daily Magnesium and NAC which seems to help lessen the intensity of the symptoms and seems to help them resolve more quickly.

 

My very (apparently furiously anti leaf) neighbor just bought a super high powered leaf blower last year and she was out there with it daily. I hope my case improves before next fall or I'm not sure how my ears will possibly rest unless I physically leave my house and drive somewhere else during the day.

 

I keep foam earplugs on the ready for stuff like that.

 

You touch on some great points. I think what's frustrating is that most people have empathy for overstimulation issues, but patients view the brain stuff as misleading to the primary pathology for most cases of hyperacusis. I do as well. Of course, you are right. There are people with sensory issues (like fibromyalgia, autism) that may have hyperacusis without having anything at all to do with the ears, but there's this big dark cloud over the support groups along the lines of like "why don't doctors recognize hidden hearing loss?!" We are like determined to correctly classify hyperacusis as a hearing damage issue so we sometimes view the (actual) normal ears types as detrimental to the cause.

I think people with noxacusis are just fighting their fight. They want regeneration medicine primarily with "brain coping" meds secondary. I agree. I just find it depressing when the groups can't be allies. I don't want to get into it, but I have seen this rift and it's unfortunate.

The bottom line is very simple: Tinnitus, loudness hyperacusis, pain hyperacusis, dysacusis, some combo of them, whatever. In my opinion, any of these disorders are capable of being extremely disabling. Severity is the key.

I support subtyping, as I have a belief that there are hidden variables that make them "seem" like the same thing, but it's an illusion. I think when one experiences a noise injury, a lot goes wrong. Hair cells get damaged. Synapses get broken. There's glutamate over-excitation, ATP leakage. I think when people get pain and loudness hyperacusis together, it's really two different pathologies brought on by the same crushing injury.

When the cause is weirder, like from a virus, ototoxicity, chemical exposure, or autoimmune disorder, I think the differences are more pronounced because even though something is being destroyed, it's more specific. This is my theory anyways.

And also, it's well known that certain brains (for example with more myelin) are much more prone to misophonia. So someone could have ear damage and then a bunch of coincidentally (or maybe not) odd neural-circuitry can make it worse. For example, I have diagnosed OCD. There's not a doubt in my mind that this brain type is a huge reason why my loudness hyperacusis is so bad. But again, we all know this is taboo and difficult to talk about because too much of this discussion, and doctors will think that the problem is the person is imagining and ruminating about sound sensitivity as opposed to just having a more reactive amygdala, predisposing the person to having worse loudness hyperacusis.

Anyways, I'm sorry for your suffering. You sound like you're improving -- I really hope it keeps up. I also hope you find relief from your other medical issues.

 

I am unsure how I would label mine in this case then - perhaps just 'discomfort' or just on the milder end of the spectrum of loudness and it seems to vary depending on the audio source e.g., 70 decibels of artificial audio would feel a lot louder and intolerable to me than 70 decibels generated by ambient/environmental noise from walking down a busy street. But for sure on the much milder end of the spectrum and it's in no way comparable to more severe cases.

 

Sound quality is a huge underrated part of hyperacusis. Phones are the absolute worst.

 

There's nothing to apologise for, @Zugzug. I didn't see it as you taking anything out on me, but in any case, I believe this condition, in whatever form it takes, can bring out the worst in all of us, so I think it is credit to both you and others on here in that we all manage to keep a level head in the spirit of healthy debate as we seek answers, which was the original aim of this post. I'm also aware that you have other health issues as well, so I can't imagine how difficult it must be for you to have those problems on top of what is already a massively debilitating condition.

The last thing I want to do is to try to gatekeep the definition/meaning of hyperacusis, and I apologise if I came across that way at all. We already have a member on here, who shall remain utterly nameless, that gatekeeps both hyperacusis and tinnitus, and the last thing I would want is to sound anything remotely like that person.

There's obviously been a lot of feedback to my post and I'm really glad to see it. I hope to respond to all of you in good time - there's a lot to digest.

@Zugzug, I will say that having read your post, I actually think we share more symptoms than you perhaps realise and I will make a detailed post in good time. Just as one example (and there were several), it is interesting to me that you also find sound quality to be a big issue and that phone speakers cause you all sorts of issues. This is something me and @serendipity1996 also experience and have been trying to figure as to why is the case for ages. I hope this now starts the much-needed debate on this particular symptom. Assuming we have different types of hyperacusis, it is interesting to me that this is a commonality, whatever our objective experience of dealing with this type of sound may be.

Ultimately, this is why I'm trying to figure out exactly what people mean when they use all the associated terms: loudness, pain, annoyance etc because it would seem to me that not everyone has the same interpretation of these words/terms, at least in the context of this condition, with the end result being that perhaps some of us use different terms to describe the same condition. I know that we all get extremely frustrated at medical professionals who don't understand what we're going through, but how can we expect them to understand us when we can't fully understand one another? We empathise with each other of course because we are all suffering, but it is difficult to know objectively what each one of us is going through, as well as we may be able to guess.

I suppose one of the aims of my post was to get people to describe their symptoms/experience in as much detail as possible and, from the feedback so far, that definitely seems to be happening. I hope the thread continues.

Will be replying to you all soon.

 

You know, I think a lot of the loudness vs. pain rift can be partially attributed to Jastreboff's influence. I don't think I've encountered outright hostility between these two camps but I think there can be a bit of division.

Jastreboff's whole treatment protocol is premised on there being 4 different categories of sufferers - his infamous 'Category 4' comprises patients whose hyperacusis is exacerbated for prolonged periods following noise exposure. Most noxacusis sufferers presumably fall into this category, with the burning neuropathic pain in silence.

He has historically been pretty dismissive of these patients, referring to them as 'flag-wavers' who don't want to get better etc, and doesn't really offer much hope for them. So I think this has fed into this false notion of 'plain old loudness' being an 'easy fix' where you can just strap on some sound generators and boom you can be fixed, when this really isn't the case. And we know Jastreboff has dubious credibility.

 

I completely agree. So much is messed up that people are just fighting for respect.

I also know the rift comes from the fact that many people get better with time and falsely attribute it to Jastreboff. So everyone has their fists up.

Pain hyperacusis has historically been super stigmatized and even insinuating that it didn't exist. Although I don't have pain hyperacusis, I have had chronic pain for years and I've seen dozens of doctors tell me it's more or less in my head.

It's kind of unthinkable that someone could think someone is making up something as straightforward as pain, but it's reality.

 

This is so weird. Sounds always sounded less distorted to me in the last 2 years (since my ototoxicity) in restaurants pumped in from ceiling speakers.

I always thought it was because of either the sound direction or somehow the larger speakers produced more vibration.

In my case, high dose macrolides are toxic to the Na/K pumps in the cochlea so I thought maybe I was able to produce less natural basilar membrane vibration on my own (which would produce closer to natural sound) and the bigger speakers did that a bit more for me.

But it could be as simple as the compression.

How does music sound on small speakers to any of you? Otherwise normal?

Now my ears are much more uncomfortable with the small speakers physically too.

 

Small speakers from my iMac caused a flare up my hyperacusis back in June that lasted for most of the summer. It wasn't even that loud for that long, but it happened.

I have no problem with regular cone speakers, for example, I have a set of Bose desktop speakers that I use now instead of the built-in iMac speakers.

I suspect something is different about how sound is produced in from small digital speakers to produce the whole range of sound. Whatever happens with that digital conversion is what is irritating people's hyperacusis with speakerphones & other laptop type speakers. I wish there was a sound engineer on hand to explain the difference from a technical standpoint, then maybe we could point to that difference causing the problem.

 

I've seen it anecdotally stated that small drivers produce a lot of higher frequency pollution that is not part of the actual signal. My gut tells me driver material is also a factor e.g. silk tweeters and paper woofers vs metal.

 

Zugzug I am very interested in your case because I believe an autoimmune chronic illness is the culprit for my case as well. Although I have noxacusis, my experience also tells me that loudness and pain hyperacusis are distinct etiologies and just shows how shitty the medical literature and terminology regarding this condition is.

Just wondering, since your LDLs are catastrophically similar to mine, are sounds *actually* louder to you? I'm familiar with that "tickling the amygdala" sensation. Do you also have any middle ear problems as well? I read you had problems with vertigo as well, which I have too, I had vertigo badly before my hyperacusis, it then settled but I now have it badly again.