Can My Story Tell Us More About the Pathology of Hyperacusis?

Disclaimer: this is a long post about how I developed this condition, so if you want the TLDR and my general thoughts on this condition, scroll to the bottom of the post as I’ve summarised them there. Given the sequence of events that led to me developing this condition, I felt compelled to share my story in the hope of sparking some kind of additional insight into the pathology of this condition.

So here I am.

After 12 years with tinnitus, I have become a member of another club I never asked to join. This post is about how I got hyperacusis, how I've coped with it, how I've improved and where I'm still struggling. For those who want it, the TLDR is that I have improved significantly. In case you’re wondering what I mean by “significantly”, I’ve gone from suicidal to being able to lead a semi-normal life, albeit one with many compromises. By some measures, I could be considered a success story considering how close I was to the brink of ending my own life. On my worst day with this condition, I made a promise to myself that if I improved enough to still be around, I would share my story to help give hope to others. So here I am.

Another reason for sharing my story is that I have reason to believe that the circumstances surrounding my case of hyperacusis may give some further insight into the pathology of this rare condition. I have realised that most ENTs and audiologists are a lost cause and totally behind the research curve, so it’s up to some laymans on an internet forum, armed with peer-reviewed medical journals, to triangulate some truth in this clusterfuck of medical confusion surrounding this condition.


Background:

I've been a musician ever since I can remember. I was a classically trained pianist and learned to play on a big grand piano at home - hardly a good start for anyone's ears. Later up in life I took up the acoustic and electric guitar (you can see where this is going). In my late teens, I started clubbing a lot and exposed myself, multiple times, to unhealthy levels of sound. I loved music and wore headphones for years, although I stopped wearing them for music-listening purposes in my early 20s as I started to find them "tiring" on the ears. I also loved playing video games as a teenager - particularly FPS games.


By the age of 17, I developed tinnitus - I'm now 29. In the beginning, it sucked, but like many others on here, I habituated to it and I was able to get on with my life and still do everything I liked doing, including music. In my mid-20s, I secured my dream job after graduating in a political science-related field. As I don’t think I’m allowed to go into much detail about my job, all one needs to know is that it involved wearing headphones for extended periods of time – often 8 hours a day. In addition, I had a very noisy commute on the train every day to work in a big city. Roll on recent events.


Recent events:

Five months ago, just before lockdown, my father committed suicide. I mention this because I don’t think the effect on the brain of such an event can be underestimated and what conditions physiological changes in the brain can later predispose one to.

To say this was a harrowing and traumatic event would be an understatement. Emotionally, I was (and to an extent, still am) completely and utterly destroyed. I'd be lucky to go a few hours without crying, never mind a few days or weeks. Soon the blame game within the family began and my stress levels, which were already at boiling point, went through the roof. Within a few weeks, I started to notice changes in myself. I became forgetful. My mind would drift in and out of reality. I became agitated, angry and volatile. This was compounded by me being executor of my father's estate and all the stress that that brought on, as well as the lack of human support as a result of lockdown and living alone.

Noticing these changes in myself, I started to do more research into trauma and its effects on the brain. I learned that real physiological changes can happen in the brain as a result of trauma (PTSD), including the enlargement of the amygdala, which are responsible for our flight and fight response, and the shrinking of the hippocampus, which is responsible for memory, spatial navigation, processing and other things. Knowing this made me even more angry - both at my Dad and the entire situation. So I started looking into coping mechanisms to reduce my stress and anxiety, which I never really had before in my life - deep breathing, Wim Hof method, CBD oil, mindfulness, stoicism etc. I mention these things just in case anyone has any comments about them.

About mid-way through lockdown, I also developed an ear wax blockage. I had been putting olive oil drops to help with itchy ears as a result of hay fever season, but I ended up waking one morning not being able to hear out from one ear. Again, due to lockdown, I couldn't get an appointment for an ear wax removal, so I became desperate. I bought a tri-syringe and attempted to syringe my own ears. After multiple attempts at syringing, I did get some relief, but I do wonder at what cost. My head felt strange for days and I had some bouts of vertigo. No hyperacusis though.


The trigger:

Not long after syringing my ears, I decided to go out for a drive one day when lockdown was eased. I was driving down a country-lane when, out of nowhere, a loud motorbike with a modified exhaust, speeding at some ungodly pace, whizzed right by my open car window on my right hand side. As soon as this happened, my heart started racing and my anxiety went through the roof. I knew that I just had been exposed to an extremely loud sound and was worried about further damage that may have been done to my ears given my existing tinnitus. On my way home, I began noticing how I was becoming very sensitive to every single sound, but nothing yet too severe. About an hour after I got home, I noticed a very sharp pain in my right ear—almost as if someone had stuck a knife down my ear canal. It eventually subsided, but I became very worried that it would come back. I went to bed and hoped for the best.


The next day:

Waking up was hell on earth. As soon as I got out of bed, I was wincing at the sound of my own footsteps. Turning on my bathroom tap to brush my teeth was complete agony. Light switches, fridge doors, taps, kettles—everything one would associate with a morning routine—became bombs in an audio minefield. It felt as if the volume of the world was being amplified through concert-level speakers and I was standing with my ear up against them. I was in disbelief. I had read about hyperacusis before, but I never thought I’d find myself in this position. I already knew doctors and audiologists wouldn’t be able to help, so I did the only thing I knew I could do: I dived into medical journals to see what I could find. I stocked up on a concoction of anti-oxidants (Vitamins A, C, E, N-Acetyl Cysteine and Curcumin) and sourced high-quality pink sound, which I played at ultra-low volume through my high-quality music studio speakers as smaller devices were a big no no. I also bought ear defenders to use to protect my ears when doing anything that I knew would cause me pain, allowing my ears to only be exposed to the sound from pink-noise. I should note that I avoided wearing the ear defenders in general – they were only there to prevent further damage.

After a week I saw almost no improvement. I was very quickly losing hope and I was now having a full mental breakdown. Suicide seemed glorious compared to this horrific reality of sound-induced pain and, for the first time, I found I was able to forgive my father for his decision to end his own life, as I finally realised he left us because his pain was just too much to bear. I could relate.

Following an intervention from friends and family, I spoke to a doctor and audiologist who told me that hyperacusis can often improve but that it takes time. I promised to give myself that time and that, in the meantime, I would find ways of coping to buy me time. I continued with my cold exposure therapy, deep breathing and CBD oil. My cold exposure therapy was something that I was extremely focused on as I became very interested in the role of the sympathetic and parasympathetic nervous systems and how my own flight and fight response may have been affected by my father’s death, which may in turn also have influenced my newly developed startle reflex to sound.

After about 3 weeks and having done some more research on the brain, I decided to also try some magnesium citrate to help bring my anxiety down. I should note that until my father’s passing, I had never experienced anxiety before. My hyperacusis made this anxiety x100 worse. Within hours, I noticed an incredible change in my hyperacusis. It was by no means cured, but it felt as if the global volume had been brought down a notch. My footsteps no longer made me wince and typing on a keyboard and clicking on a mouse no longer left me in agony. I still couldn’t tolerate many other sounds, but I felt like this small step forward gave me the encouragement I needed to stay the course. I also knew there and then that there had to be some connection between the brain and this condition. I still think damage to the ears is a pre-requisite for developing this condition, but perhaps a multitude of factors are required, as appears to be so in my case.

With this improvement, I continued to listen to low level, high-quality pink noise for 8-10 hours a day. I also decided to include pink noise in the evenings when I was asleep and started to see even more improvement. After a few weeks, this improvement plateaued and I actually started to notice some regression. I was beginning to wonder if my ears needed a break, so I stopped listening to pink noise at night. I soon started to notice some improvement again and it made me realise that ears seem to fatigue more easily when one has hyperacusis, so striking a balance seems to be critical.


Where I am now

The final improvement came when I finalised my father’s affairs. I think no longer having to worry about clearing a house and dealing with admin made me a lot less stressed and I do think stress can make this condition worse.

After 3.5 months, my hyperacusis is now at a point where most sounds are tolerable. I can go out for a walk in the local park; I can pop into the local post office; I can go and play tennis; and I can go out for a drive (albeit with the windows up). However, I was and still am struggling with things like cutlery, glasses on glass tables, metallic and ceramic sounds (plates) and small artificial audio sources like iPhone speakers. I still can’t play piano or listen to music, I can’t go out to a bar or restaurant and I also still can’t go back to my job, but considering where I was I know I’ve come a long way. Being in the kitchen is still like standing at the gates of hell, but thankfully I have a supportive family so I don’t have to worry about that too much right now. There are the occasional days when my family and friends seem to lose patience with me, but I’ve realised that it truly is impossible for one to understand this condition unless they are in it themselves.


My thoughts on this condition

I have lost count of the number of studies I have read about this condition and others associated with it. I have left no stone unturned in trying to establish what all the contributing factors to this condition may be. It is clear to me that some theories deserve some serious merit (such as the type II afferent nerve fibre theory), but there is no doubt we still can’t be sure as the pathology is still poorly understood.

My personal opinion is that the damage done to my ears from my lifestyle played a major role in me developing this condition, but I also believe that physiological changes to my brain resulting from my PTSD, following my father’s suicide, have changed my flight and fight response and how my body perceives external stimulus, including sound. I therefore think that sound damage and compromised nervous systems/brains are perfect conditions for developing this condition, but I wouldn’t go as far as saying that both are required to develop it. I would therefore be interested to hear about other people’s experiences, as I read another story on here about someone who developed hyperacusis after their loved one (also their father, I believe) committed suicide. Is it therefore possible that those who have experienced some kind of serious emotional trauma are predisposed to developing a condition such as hyperacusis following loud noise exposure? I also wonder whether regaining some voluntary control over one’s nervous system can induce positive changes in this condition.

As far as treatment is concerned, I do think pink-noise (as a concept) has serious merit. However, I think listening to pink noise through any small device is a big no no, making pink noise in its usually prescribed form as dangerous. As someone who has an audio background, small sources are extremely biased to higher frequencies and distort more, which are the worst thing for hyperacusis sufferers. I am therefore completely perplexed as to how TRT with small noise generators can be a recommended therapy for this condition. I'm not a doctor, but my advice to anyone out there would be to source a high-quality pink noise file (recorded at 192 Khz sample rate, wav file - not mp3) and play it through hi-fidelity speakers or pro-level audio speakers. This will make the sound a lot more gentle on the ears and will reproduce a more authentic, true picture of the original recorded waveform.

On another note, I have also recently realised that I have bruxism. It would appear that this condition can cause all sorts of problems associated with the ears. Bruxism seems to be caused by stress, so I would therefore say that stress can make this condition worse. I am currently looking into ways of stopping my bruxism to see if I can make any further progress with my hyperacusis and will report back.

In conclusion, I hope my anecdotal story has shed some additional light into the pathology of this condition, as I have not seen any studies that look into the physiological differences between the brains of hyperacusis and non-hyperacusis sufferers. I welcome any comments/thoughts on it, even if one thinks it doesn't, lol.

Finally, I just wanted to express my love to everyone on here. This journey is horrific and we all deserve a lot more understanding and empathy from doctors and those around us.

 

@Aaron91
Firstly I'll say I'm very sorry to hear about your dad.

Until I got hyperacusis I could never understand how people could even contemplate the S word. Hyperacusis has made me realise that death feels like an acceptable escape when your in pain. I'm not ashamed to say just 2 weeks ago I remember laying on my bed incredibly drunk and begging for my fiance to just let me die.

My H came after 2 seconds of loud noise. This has caused me burning ear pain, face pain, numbness and all kinds of other horrible sensations in my right ear. Watching telly makes my ear tingle beyond annoyance. I can tolerate most daily noises but by the end of the day my ear is full and I'm exhausted.

Over the past two weeks things have minutely improved and with the help of Citalopram I'm kind of living again. The burning is much less frequent as is the face pain and tonight I watched most of a film without feeling the need to turn it off.

Your story has given me hope that one day I may improve to a point where I feel my old self again. Please keep us updated on your progress. People like myself relying on these success stories to keep going.

I wish you all the best and continued healing.
Shaun.

 

On what date was that?

Ears take forever (as in many months/several years) to heal. My hyperacusis took about 1.5-2 years to disappear. After about a year, I felt a lot better.

My guess is that your ears were healing naturally, and the noise slowed down that process.

It seems to me that after the initial trauma it makes sense to go easy on one's ears, and try to limit the exposure to noises. If one continues to suffer from hyperacusis after a year or so, then one might want experiment with pink-noise.

You need to give it time. Chances are that after a year or two your hyperacusis will be gone.

 

Really sorry to hear about your Dad, thanks for taking the time to write your elaborate account.

I'm also really interested in understanding more the pathologies and mechanisms particularly of pain hyperacusis because I seem to come to the conclusion that although under the same general umbrella as tinnitus and other hearing issues in terms of the damage that could possibly be causing it, it seems to be also a very unique condition with so much caution being exercised when it comes to whether or not the current regenerative drugs undergoing trials could do much for it.

I wrote this a few months back, it might be a good read for you as I think we are on the same page with this. Note - since I finished reading the responses to this thread below which were very enlightening, I'm starting to think that the damage caused by acoustic shock is so much more complex than hair cell damage or synapse disconnection. The acoustic shock symptom cluster is what I find very interesting now.

https://www.tinnitustalk.com/thread...o-acoustic-shock-synapse-disconnection.41484/

 

Yeah, regenerative medicine is a big unknown when it comes to hyperacusis it seems simply because our understanding of it is pretty murky. There's an ARO conference from 2017, hosted by Hyperacusis Research - there's a write-up available of it and regenerative medicine is discussed in the context of hyperacusis (particularly painful hyperacusis which this conference seems to focus on). https://hyperacusisresearch.org/wp-content/uploads/2017/03/ARO-2017-Technical-Summary.pdf

There's some interesting snippets I've highlighted where it touches on this e.g.

"It’s important to recognize that while researchers have found that Type II afferents and the cochlear OHC are integrally involved in noxacusis, the actual experience of pain hyperacusis is more complex." I agree with you, hyperacusis seems to be so heterogeneous and can manifest differently so how do we know the exact patterns of damage are the same.

Another excerpt that discusses regenerative medicine for hyperacusis.

"Could bioengineered or even 3-D printed cochleae (or OHC) restore or improve hyperacusis? As a thought experiment, suppose the only permanently dysfunctional tissue was damaged hair cells or their synapses on Type I and II neurons (see section below on synaptopathies). Now, suppose we could make a theoretically-perfect hair cell replacement able to re-form functional Type I and II neural connections. Then (in this thought experiment) we should be able to cure hyperacusis, because any central component would be functional (not permanent)—that is, it would have developed solely as an accommodation to (or consequence of) what had been permanently damaged—the cochlea. This thought experiment motivates research on hair cell functional restoration, regeneration or replacement."

These strategies may sound various degrees of futuristic, but I wouldn’t be surprised to hear that some of them are farther along than we might think, or that technologies other than these are (or will be!) in development and improve the lives of people with hyperacusis, as suggested by several speakers in a symposium on studying the inner ear via ingenious ‘models’ in vitro (outside the body)

There was a section which included speakers who are studying how organs respond to changes in the environment by constructing in vitro models. It would be really interesting if they could develop a model of pain hyperacusis.

 

Yes it would be so good to hopefully get this model one day.

 

I'm very sorry to hear about your father - that is devastating. Hyperacusis is indeed a mystifying condition and it's striking how heterogeneous it tends to be. I personally very much suspect that hyperacusis is something that originates in the periphery so at its root its reflects a change in the properties of the inner ear. Professor Paul Fuchs of Johns Hopkins, whose lab has been carrying out research into pain hyperacusis for years, says he suspects this. From an interview he gave: "But when one looks at tinnitus, it is pretty clear that there are a lot of central plasticity and central changes that conspire to provide tinnitus to people. Hyperacusis seems more strongly associated with a change in the peripheral sense organ itself, so hyperacusis is more likely to be something where we can localize the actual mechanism to the inner ear as opposed to the brain."

And on the differences in susceptibility among individuals to acquiring hyperacusis: "But I think we can look at other examples of how people respond to varieties of insults and have different kinds of responses. We know that some people are very allergic to particular things and other people are not, so that’s a genetic difference in their immune systems that confer different sensitivities. We know that some people have very sensitive skin. Other people do not."

But the actual experience of hyperacusis is very complex and seems to give rise to a wide variety of symptoms - I have had the classic trigeminal nerve pain which, thankfully, has mostly gone now. I wonder if this is a form of widespread inflammation stemming from the damaged cochlea that gives rise to a form of secondary hyperalgesia. Incidentally, I've also found that when these symptoms were most troublesome, any form of stimulant such as caffeine or prescription medication (I have ADHD) would exacerbate these symptoms - not so much ear pain but facial pain. So I wouldn't be at all surprised if stress could play a contributing role. I think acoustic trauma, whether a one-time incident or gradually, is generally the trigger but there are other external factors which can definitely spike symptoms.

So I agree there's still so much we don't know and even the type 2 theory, which in my mind is the most convincing, still needs to be conclusively determined. It will be interesting to see what benefits regenerative medicine will bring - we know this condition arises as a consequence of hearing damage, so it makes sense to me that by addressing the underlying pathology you could see some benefit - the extent of which remains to be seen. The thing with this condition is that there's such a massive spectrum of severity from people who can essentially live a normal live apart from going to concerts etc to people who can't even move because the rustling of their clothes causes pain. So I don't necessarily think there is going to be a one-size-fits-all treatment.

The encouraging thing about this condition, in my view, is that for most people it does show a tendency to improve providing you're careful with your ears and minimise exposure to further acoustic traumas. I had a setback 8 months ago and it's 80-90% better. So it seems like it can be quite a dynamic condition that is not necessarily extremely resistant to change. I think, in most cases, you're probably not going to be able to recover to the the same thresholds as the average person though because you don't have a healthy cochlea.

 

@serendipity1996 Yes agree with you, I think that it's so important to minimize the risk of further acoustic traumas because once you've had one you now know that you are susceptible to them and until some type of proven imaging or whatever technique comes along that shows why you got it / how you got it in the first place and then a proven measurable drug or treatment is released that shows and proves why it fixed it and how it fixed it, just resting and recovering to be able to get to a point where you can cope with life 'OK' is not enough to say 'that's it, I'm cured'. How many people think they're cured and then get stung again.

With regards to the many varying different clusters of symptoms that we all have, ranging from anything from old age hearing loss through to hidden hearing loss, tinnitus or hyperacusis, both tinnitus and hyperacusis, acute, chronic, Meniere's or combinations of all or any of them its going to be very interesting to see how the process of elimination effect unfolds once these drugs hopefully start to get released.

I hope that even though the pathologies and damage models / mechanisms are quite unknown in a lot of cases that once, for example, drug X (whatever the first one is) gets released there will be enough people on the whole spectrum of hearing impairments that try it out to establish a definite pattern of symptoms or cluster of symptoms among us that it works for. Sort of like defining a model backwards. And then that process of elimination will hopefully continue with drug Y, Z etc. that aim to fix something different and fix a different sub group of sufferers each time, even maybe combos of drugs will again fix even more specialized sub groups.

At the very least, if a drug does not work for a specific condition, that process of elimination will be taking place to rule out what definitely doesn't work on certain groups of us so research efforts can shift to others areas. I just hope that by the time this first wave of meds hopefully all come out (I'm thinking of FX-322, Otonomy, Hough, Pipeline, and the potassium channel drugs) that no one group of us is left standing in the rain with researchers drawing a blank and not really having any new areas of research to focus on.

 

Yeah, I definitely agree with these points. The current situation with regards to these hearing disorders strikes me as quite interesting because developing treatments appear to be ahead of developing better diagnostics. E.g. we currently have FX-322 as a very promising hair cell drug in Phase 2a and then a handful of drugs for hidden hearing loss in Phase 1/2 e.g. Otonomy and Pipeline. So we may very well have drug treatments available before we actually have the proper diagnostic tools in place to assess which would be most suitable for you.

I'm also not surprised that Frequency Therapeutics, for instance, hasn't mentioned hyperacusis at all in discussions of their drug purely because it's much rarer than tinnitus, it seems (certainly, disabling hyperacusis). I think it will be interesting to see what their next phase reveals, though particularly if they are exploring secondary outcomes.

 

I'm curious, did you see a lot of progression in the first 6 months? I'm about 8 months in from a setback, about 80% back to normal but still have issues with artificial audio - it's odd as I have no problems walking down a busy street which is objectively much louder! - I've noticed that the sound quality from laptop speakers actually sounds different like it sounds quite harsh and tinny - laptop speakers obviously aren't the best regardless but it sounds worse than it did before and in turn triggers my hyperacusis. I end up having to turn the volume down until it's barely audible because the quality just feels sooo harsh on my ears! I'm kind of anxious that something's changed in the quality of my hearing and it won't go back to normal. I've actually made pretty substantial progress over the past month - face/trigeminal pain has all but gone but I don't know how much further improvement I can expect. Maybe this is just the most persistent symptom and I need to give it more time?

 

I did. Unfortunately I had had a setback - I pressed a loud phone to my bad ear, its volume set to max, and the person on the other end of the line raised her voice to greet me. That sent me to square one. But many months later I got back to where I was before that incident.

Two years from now those problems will most likely be gone. Ears take a long time to heal...

I think that you are doing the right thing by listening to your body, and not forcing yourself to listen to those sounds because you know that the sound shouldn't be hurting you.

These symptoms are normal, and it is normal for them to still be there 8 months after the setback.

The more it fades/improves, the slower it tends to fade/improve. But after 2-3 years, there is usually enough improvement to feel like one has pretty much been healed.

 

@ShaunR @100Hz @serendipity1996 Thank you all very much for your kind words and condolences.

@100Hz I actually read your thread some time ago when I first started diving into this forum shortly after I developed hyperacusis. It was very enlightening and thought-provoking. I was somewhat disheartened to hear in @serendipity1996 's reply about the researcher who seemed quite confident that there was no relationship between OHC damage and hyperacusis because that would possibly make OHC regenerative drugs (such as FX-322) obsolete to us H sufferers. His theory, of course, is very consistent with what we see in the real world: millions of people with OHC loss but no hyperacusis, so something else is definitely going on. If that something else is synaptic loss, I am aware that FX-322 reconnects hair cells to synapses but only in areas where there is both hair cell and synapse damage. Having said that, it is evident from these forums that there are many T sufferers out there without hyperacusis who have synaptic damage but little to no OHC damage.

So again, even if you have both OHC and synaptic damage, something else is going on with H sufferers. This to me is a key point in our attempt to understand the pathology of hyperacusis. My question, therefore, is: if hyperacusis is, indeed, the result of sensitised type II fibres, what causes this sensitisation in the first place? Is it ATP? Is this ATP the result of OHC damage or synaptic damage or both? If so, why does not everyone have this sensitisation response (and therefore hyperacusis)? I would assume that ATP is released in all cases of OHC loss.

This is why I was very keen to share my story because as you said @100Hz, things start to get very muddy when one dives into the above. It is clear to me that not all nervous systems are equal. We all have different thresholds in our flight and fight responses. People with serious emotional traumas seem to be more "on edge" than those who haven't had them. I'm only a layman and my medical understanding is limited to say the least, but what I am trying to establish here, and this was one of the key questions I wanted to get across in my post but perhaps it got lost, is whether someone with a compromised/overreactive nervous system is more likely to develop H once the type II fibres have been sensitised?

On a personal note, one thing I can say for sure is that my db threshold for my startle reflex is much lower. From what I've read, many other hyperacusis sufferers have the same experience. We know that the startle reflex is controlled by the central nervous system, which is why I am so intrigued by the role this part of the body plays in this condition. I'm sure many would argue that the compromised startle reflex is the result of H, but the key thing here is what one means by "the result of H" - is it the emotional trauma of the experience and the effect that has on the brain, or is there something more physiological happening here in the ear? If it's the former, does the brain, as a result, lower the startle reflex because it believes that all sounds are dangerous - rightly or wrongly? I guess what I'm trying to say here is that I think there is real biofeedback mechanism going on here that we still don't quite understand and I for one am very interested to see what avenues there may be for approaching this condition from this central/autonomous nervous system perspective.

 

Hi Aaron,

I am sorry for your loss. Stress plays an important role in hyperacusis; we could say there are filters that classify sounds and our nervous system and lymbic system labels them as "dangerous", "pleasant", "annoying" etc. When one has hyperacusis these filters are altered and all sounds above a certain level or sound of a certain pitch, above a certain decibel level, trigger a "fight or flight response". This can get better lowering your anxiety and stress levels, trying to put things in perspective no matter how bad they are, and trying to postpone or avoid unnecessary obligations.

When one has hyperacusis it is best not to be set on dates, deadlines, and things that "must be done at a certain time", as the presence of loud sound, or symptoms derived from hyperacusis or tinnitus (pressure, headaches, migraines etc) may mean that things have to be postponed to be done later on, when one feels better.

Noise damage is cumulative. Some people compare it to "strikes" at a baseball game. That's why when ears are damaged by a first episode of noise they get more prone to get damaged again. This also means that sounds that were not perceived as "damaging" or loud enough before now can make damage. Of course I don't mean things like fork on a dish, cutlery noise, but I do refer to noise that is close to damaging levels for everyone else (loud motorbikes, power tools, firecrackers, amplified sound at clubs etc)

Use hearing protection when there is the possibility of really loud sounds around.

Go to the dentist. They can design a mouth guard (not sure if this is the correct word in English) for you to wear at night and bruxism should get better.

I hope you continue improving!

 

I think the OHC could still stand - it's clear that hyperacusis follows on from some kind of inner ear damage whether that be hair cell damage or synaptopathy. There's still so much we don't know although I would still be cautiously optimistic about the potential of regenerative drugs. It's very mystifying as to why some of us develop hyperacusis and others don't since, with how common hearing loss is you'd expect this to therefore be a much larger problem than it is. Paul Fuchs was asked this and his response was that there could, for example be a genetic difference in immune systems that confers different sensitives, akin to how some people have catastrophic allergic reactions to some things or others have highly sensitive skin. So I guess there could be two people with the same degree and type of hearing damage but the way one person's system reacts to it could be catastrophic (thus resulting in hyperacusis and tinnitus) whereas another person just gets garden-variety HF hearing loss.

He also said that: "There may also be differences in the genetics between people, so if it is the case that type II fibers are the pain fibers of the inner ear, they are not necessarily going to have the same pattern of gene expression in every person. They may be more or less subject to the kinds of changes that might give rise to hyperacusis and tinnitus."

So perhaps for some of us it is genetic bad luck like the people who have a fatal reaction to nut allergies for instance except for us we're genetically wired to have a catastrophic reaction to hearing damage.

 

Don't forget Prof. Richard Salvi's theory that everyone with T actually also have H but most of them have it in such a mild form that they aren't even aware of it (I can't be arsed to find the source where he says this, sorry). In hindsight, I think this was my case between 1999 and 2014. There was also this recent study on the association between T and H which somewhat supports Salvi's theory. https://www.mdpi.com/2077-0383/9/8/2412/htm

However, I agree with you that there could be other things besides OHC loss going on. Personally, I believe there are several different forms of hyperacusis. Some of them might be entirely middle ear related for example.

EDIT: And the brazilian (albeit small) study about LDL levels in people with T compared to healthy people, which there is a thread about on this forum, which also supports Salvi's theory.

 

@Aaron91 The point about the OHC and ATP is something I can't get my head around either, because if there's that much OHC damage going around why is there only a very small percentage of people suffering the ATP/ Type II pain? (If that's even what hyperacusis pain as we know it even is). I agree that something else is at play with this type of seemingly incurable life crippling tinnitus and hyperacusis.

I did pick up your main point about emotional trauma possibly making people more susceptible when I read your thread and I thought you'd go back to it again because its obviously something you've got you're mind on as you go though your own thought process. I don't doubt for a second that an individual nervous system could be at play here. I'm in 2 minds about this personally, I'll explain my own situation because you got me thinking about it as well. For myself at around 3 months before my acoustic shock I did have a very physical accident that left me very smashed up and traumatized both physically and emotionally (I doubt comparable to losing a loved one though), but I had no ear or hearing related symptoms from this accident. But the trouble I have with accepting this as a reason for my tinnitus/hyperacusis, is that going back another several months before that accident, I had what I now know to be the warning signs of serious hearing problems to come. Several months before that accident I suffered a huge dose of tinnitus, not like I'd ever had before. It was directly after a big, loud night out and lasted a whole week before subsiding, it wasn't hard to work out why I had it. It was bad enough to get me to start googling a bit about tinnitus and unfortunately although I got to learn about Meniere's, hyperacusis never popped up on the radar at the time, it would have scared me straight (I only found out what hyperacusis was after my acoustic shock). I also had custom earplugs made off of the back of that tinnitus scare. My hearing went back to normal after about a week however and I just put it down to temporary tinnitus. I just don't doubt for myself that my tinnitus & hyperacusis is big scale noise induced.

I learnt a lot after I wrote that thread from the replies I got from @serendipity1996, @Juan and @grate_biff. I am still trying to understand the 'acoustic shock symptom cluster' as it just goes so deep. The only thing I know for a fact as someone who's had an acoustic shock is that something very very strange happens in the ear at that time. Like the ear equivalent of a ligament or tendon snapping, but with no pain (which definitely was to follow). All I know is that I was my old self up to the exact moment of that acoustic shock, and for the last several years from the second since have been a totally different post acoustic shock version of me. That moment changed my life.

The more I read about the possible damage caused by this acoustic shock symptoms cluster and the possible damage via hypoxia or whatever else to the cochlear nucleus (I'm no scientist but basically damage to anything that involves that whole nerve system from the cochlea leading to the brain), it looks like if the damage is anywhere along that pathway then straight away dead hair cells and disconnected synapses are maybe not that relevant to us particular type of sufferers unless it's a combination of them that makes H what it is.

 

@Aaron91

I am so sorry about the loss of your father and the resulting pain for you.
Really appreciate that you took the time to post your story to help others.

 

Aaron, thanks so much for your very honest account of all you've been through. You've been very courageous.

I was particularly interested to hear about the apparent success of using magnesium.

'After about 3 weeks and having done some more research on the brain, I decided to also try some magnesium citrate to help bring my anxiety down. ... Within hours, I noticed an incredible change in my hyperacusis. It was by no means cured, but it felt as if the global volume had been brought down a notch.'

I have twice brought H under control simply through the use of Mg (sadly it hasn't helped with T, which continues to worsen, little by little). I have written about it here a couple of times and received a couple of enquiries but haven't ever heard until now of it helping anyone else. Doctors look at me askance, rather than showing an interest.

I hadn't identified that my H is anxiety-related though, although on reflection, I probably was under pressure during both bouts (once while traveling alone for an extended period and the other while working in a demanding job that required attending noisy public meetings). But I think also I get quite Mg deprived unless I keep up a daily dose and that eventually causes my H to worsen.

It never goes away altogether - and I relate to the wincing in the kitchen - but it makes normal living doable.

I'd love to hear of anyone else for whom this works.

 

So eventually you got to a point with hyperacusis where your ears could tolerate walking down the street or going to work? I'm currently housebound because of pain hyperacusis and extremely reactive tinnitus and it seems like there's no end in sight.

 

Unfortunately I still can't work, as my job relied heavily on my ears. I also can't do my main hobby - music (was/am a piano and guitar player). I still wear earplugs pretty much everywhere I go, including walking down the street and generally still avoid going out if I can.

I'd say my left ear is at a point where, if my right ear were the same, I probably wouldn't be spending as much time as I am now on this forum. My left ear has some residual sensitivity but almost no pain. My right ear, however, is still very sensitive - cutlery, plates, artificial audio sources, crunching paper or plastic bags etc. I also experience a lot of delayed facial/jaw pain on the right side of my face after I've been exposed to uncomfortable/painful sounds that can take days to feel better again, assuming I'm not exposed to uncomfortable sound during that recovery time. I assume this is the trigeminal neuralgia-like symptoms that others have also experienced.

@weab00 I know what it feels like for there to be no end in sight and this condition almost led me to the unthinkable just a few months ago. I still feel that way sometimes, but I must remind myself that I have improved, albeit not to the extent I would've liked. In the beginning, I was wincing at the sound of my own foosteps when walking on a carpet floor or when typing on a keyboard. I no longer have that, but I still can't live a normal life. I hope with time this too shall pass, for both of us. My advice is to rest and protect your ears, get good sleep, manage your stress (easier said than done, I know) and eat and supplement well. I'm currently in the process of designing a lifestyle/diet/supplementation/behavioural protocol based on a lot of my reading so far (aided by other members on this forum) to help myself live with this condition but also help the body to potentially heal itself. I'm not a doctor, have little to no expectations that it will work, but at this point most things are worth a shot. Serious problems call for serious approaches. I'll let you know in due course whether I have any success with it, but I think I'll need to trial it for at least a few months.

 

Can you tell me about trigeminal pain? Where is it located?

 

What's so funny about a diagram showing the trigeminal nerve, Michael?

 

Michael is a fraud honestly, but what did he do?

 

He rated my anatomical diagram answering the woman’s question funny for some reason.

 

He should be held accountable for possibly worsening some cases of hyperacusis here with his religious belief in TRT.