Dysacusis (Hearing Distortion) etc.

[vermillion]

Hi Laura, @HootOwl, how are you guys doing now? I am 7 weeks into this fresh hell. Distortion seems to come and go. It definitely is not always present, but present more often than not. I'm interested in understanding the physiology of this condition a bit better, so I can contextualize it within the therapies currently in pipeline. It's always easier to cope if at some point you have some chance at resolution.

I was on that same level, but in the past few weeks it has gotten a looot worse. Has anybody talked to @SilverSpiral?

I have tried to reach him because he was also very bad with this and I don't know anybody else with such severity. I am at my wits' end.

 

[OptimusPrimed]

I also have had this since 2007. It seems to be worse with stress. High pressure weather systems also make it worse. And of course more noise exposure like the predicament I was in a while back.

Mine came on after an acoustic trauma. I can't figure out if it's a TTTS thing or just nerve damage. Very annoying condition though for sure, it's trying. Absolutely nothing helps with it. Toilets flushing, showers, running water, female voices, my own voice and group or loud music, the radio in the car. All those things produce uncomfortable distortion/"buzzy" sound.

 

[GBB]

I also have had this since 2007. It seems to be worse with stress. High pressure weather systems also make it worse. And of course more noise exposure like the predicament I was in a while back.

Mine came on after an acoustic trauma. I can't figure out if it's a TTTS thing or just nerve damage. Very annoying condition though for sure, it's trying. Absolutely nothing helps with it. Toilets flushing, showers, running water, female voices, my own voice and group or loud music, the radio in the car. All those things produce uncomfortable distortion/"buzzy" sound.

Have you ever tried benzos? One thing I think is interesting is that my distortion can be super different depending on the day, for example listening to a PC fan one day I might hear 90% tinnitus distortion and the next day I hear mostly the actual fan noise. Benzos seems to help make the primary noise come through and minimize the distorted signal - only mentioning this as I wonder what physiological implication that signals...

 

[OptimusPrimed]

Have you ever tried benzos? One thing I think is interesting is that my distortion can be super different depending on the day, for example listening to a PC fan one day I might hear 90% tinnitus distortion and the next day I hear mostly the actual fan noise. Benzos seems to help make the primary noise come through and minimize the distorted signal - only mentioning this as I wonder what physiological implication that signals...

My distortion is omnipresent. Always there. Some days worse than others. I've tried light doses of benzos. I don't like taking those drugs, they aren't good for neuroplasticity in the long run. Alcohol seems to lessen the distortion. Can't figure out if it's cochlear synaptopathy, hair cell loss, or TTTS. I had an ABR done and it said the nerves were good but present ABRs may not be detailed enough to detect damage.

 

[Richardfromuk]

I texted in to my local radio station that was featuring hearing loss. The presenter had never heard of dysacusis and had problems pronouncing it although she was very sympathetic when I stated it causes distortion with hearing and wondered if anything could be done.

 

[OptimusPrimed]

Have you ever tried benzos? One thing I think is interesting is that my distortion can be super different depending on the day, for example listening to a PC fan one day I might hear 90% tinnitus distortion and the next day I hear mostly the actual fan noise. Benzos seems to help make the primary noise come through and minimize the distorted signal - only mentioning this as I wonder what physiological implication that signals...

A little update. I still have the distortion and it fluctuates from day to day. I have not tried benzos to see if they help with minimizing it. Flexing my masseter muscle also causes a high frequency chirp in my right ear. I suspect somatic tinnitus in addition to the dysacusis.

I really wish there was something to be done for it! I think reducing stress levels as much as possible is pretty much all that can be done!

 

[ZFire]

A little update. I still have the distortion and it fluctuates from day to day. I have not tried benzos to see if they help with minimizing it. Flexing my masseter muscle also causes a high frequency chirp in my right ear. I suspect somatic tinnitus in addition to the dysacusis.

I really wish there was something to be done for it! I think reducing stress levels as much as possible is pretty much all that can be done!

How are your distortions now?

I think another pathway on how hearing distortions or dysacusis can resolve over time, is the brain's capacity in adapting to it. It sounds really basic, but I feel like this one gets overlooked.

I really do think your brain can adapt to distortions and eventually perceive them as normal over time. Like if you've experienced distortions/dysacusis for a long period, say 25-30 years, by that point, your perception of sound may have adjusted to the point where you no longer remember how things sounded before the distortions. You are consistently experiencing it. It might sound unnatural and distorted now, but over time, it won't be perceived that way. The brain will have reinterpreted these new patterns as normal. It becomes your new normal. I think me personally, I wouldn't be able to recall how things were suppose to sound like after 20+ years has passed.

I still think distortions get better for many people who have them. Predicting when it happens is difficult. It's possible that remnants of distortions may remain, but with time, the brain can learn to adapt to them.

Anyways, I just wanted to highlight another potential pathway in how dysacusis can resolve itself. I find it underrated.

 

[TheCapybara]

How are your distortions now?

I think another pathway on how hearing distortions or dysacusis can resolve over time, is the brain's capacity in adapting to it. It sounds really basic, but I feel like this one gets overlooked.

I really do think your brain can adapt to distortions and eventually perceive them as normal over time. Like if you've experienced distortions/dysacusis for a long period, say 25-30 years, by that point, your perception of sound may have adjusted to the point where you no longer remember how things sounded before the distortions. You are consistently experiencing it. It might sound unnatural and distorted now, but over time, it won't be perceived that way. The brain will have reinterpreted these new patterns as normal. It becomes your new normal. I think me personally, I wouldn't be able to recall how things were suppose to sound like after 20+ years has passed.

I still think distortions get better for many people who have them. Predicting when it happens is difficult. It's possible that remnants of distortions may remain, but with time, the brain can learn to adapt to them.

Anyways, I just wanted to highlight another potential pathway in how dysacusis can resolve itself. I find it underrated.

I guess it's better to wait it out patiently and rely on neuroplasticity than experiment with medication that might only make things far worse, but that goes for regular tinnitus and hyperacusis, too. I've seen too many stories on this site for the two years I've been around how people worsened from meds.

I actually already forgot what the high frequency I lost sounded like in most things like showers, birds, and music. I still easily recognize where it sounds wrong because of the distortion, but I can't remember what it's supposed to be like. My dysacusis did improve over time even though it's still around, but it's not as present anymore in some sounds. There are still a couple of things that are a little bothersome; for example, when I yawn in quiet, it sounds like a minor flashbang going off until I stop yawning. Maybe sounds like that will stick around, but I hope it'll keep improving more anyway; the distortions are, at the very least, not nearly as bad as they were in the first year.

 

[Cmspgran]

As someone suffering from dysacusis and reactive tinnitus 10 months in, your posts always give me hope @ZFire.

It's a horrifying experience, worse than tinnitus in some ways for me, as the sonic landscape you have been used to (in my case for four decades) suddenly changes, and it has had a huge mental toll, and I struggle to cope.

Have you any tips for coping strategies? Clonazepam does affect the distortions in a positive way, and I'm trying to use it 2-3 times a week, max. I'm trying to persevere with mindfulness-based meditation but find it difficult. I think the other difficulty is the severe variable nature. On the days the real-time angle grinder reactive tinnitus is going haywire, the dysacusis beeps are lessened, and vice versa. I'm not sure why this is. Any help is appreciated, as always.

 

[ZFire]

I actually already forgot what the high frequency I lost sounded like in most things like showers, birds, and music. I still easily recognize where it sounds wrong because of the distortion, but I can't remember what it's supposed to be like. My dysacusis did improve over time even though it's still around, but it's not as present anymore in some sounds.

I'm glad to hear about your progress, buddy. I really do think time can truly work in our favor when it comes to distortions. You know, the fact that you can't remember what it's supposed to be like or sound like will actually turn out to be advantageous for you in the long term. Even if they persist, I genuinely believe your brain will naturally adapt to these new sounds, incorporating them into your auditory system over time and making them appear more "natural" and "normal" as time progresses.

Hopefully, the remaining distortions you still experience will continue to diminish. Cheers.

As someone suffering from dysacusis and reactive tinnitus 10 months in, your posts always give me hope @ZFire.

It's a horrifying experience, worse than tinnitus in some ways for me, as the sonic landscape you have been used to (in my case for four decades) suddenly changes, and it has had a huge mental toll, and I struggle to cope.

Have you any tips for coping strategies? Clonazepam does affect the distortions in a positive way, and I'm trying to use it 2-3 times a week, max. I'm trying to persevere with mindfulness-based meditation but find it difficult. I think the other difficulty is the severe variable nature. On the days the real-time angle grinder reactive tinnitus is going haywire, the dysacusis beeps are lessened, and vice versa. I'm not sure why this is. Any help is appreciated, as always.

I know exactly what you're talking about when you speak of the variable nature that occurs between reactive tinnitus and dysacusis. There are days when the distortions take over the reactivity and then other days when distortions take a backseat to the tinnitus reactivity. It's relentless, I know. It feels like taking one step forward and one step backward simultaneously with no real tangible progress, just a constant shifting of one problem to another.

That's pretty good that you're able to find some relief from benzos. I recalled another member named @Matchbox also getting relief from Clonazepam for his distortions. He had a pretty bad case of distortions, too, and I do recall him saying his distortions have dramatically improved over time as well.

Honestly, my way of coping with distortions was just to endure it and weather its storm as best as you can. I have to agree with @TheCapybara that it's a matter of waiting and being patient.

You're still early, try not to despair. There's hope for you. I'm sure you're going to see some kind of resolution with your distortions. There's a good chance it does. Best wishes to you, chief.

 

[Cmspgran]

I know exactly what you're talking about when you speak of the variable nature that occurs between reactive tinnitus and dysacusis. There are days when the distortions take over the reactivity and then other days when distortions take a backseat to the tinnitus reactivity. It's relentless, I know. It feels like taking one step forward and one step backward simultaneously with no real tangible progress, just a constant shifting of one problem to another.

I couldn't have summed the situation and feelings surrounding it any better than your paragraph above; you absolutely nailed the god-awful situation.

Thanks @ZFire; it sounds crazy, but it's little posts like yours that have kept me going, there's no support anywhere in the UK, and no one understands things like reactive tinnitus or dysacusis - even the so called leading experts I've seen, we really are on our own.

It would be nice to check in from time to time and keep each other updated on the reactive tinnitus/dysacusis progress. I'd read a lot of your old posts, @ZFire, and noticed that your hyperacusis had improved, your distortions somewhat, but not really your reactive tinnitus. However, you'd habituated to it, which just feels remarkable to where I'm currently sat, I can't ever imagine just getting used to it.

 

[TheCapybara]

there's no support anywhere in the UK, and no one understands things like reactive tinnitus or dysacusis - even the so called leading experts I've seen, we really are on our own.

Isn't that the truth. I can only assume most of us have tried to explain our situation to our ENT; mine was absolutely clueless haha. I tried to ask him if he knew about dysacusis or distortions, what causes these beeps I heard on top of music or TV, and he just kind of shrugged it all off since he had no answer to any of it. His only solution was microsuction, I wish I never went through with that even though I luckily didn't get worse from it.

Everything that I've learned about dysacusis and even just the name alone, I had to discover all of that on here. It's so sad how uninformed the so called experts are.

 

[ZFire]

Thanks @ZFire; it sounds crazy, but it's little posts like yours that have kept me going, there's no support anywhere in the UK, and no one understands things like reactive tinnitus or dysacusis - even the so called leading experts I've seen, we really are on our own.

Yeah, it sucks that there's so little support out there. I'm glad to hear that you're able to persevere and that my posts have been helpful to you in some way.

You're in the thick of it, but remember, you're still early in dealing with this. Reactive tinnitus is a tough road, but the reactivity could settle down with time. It has to some extent for me. I've noticed that timelines for stabilization vary for everyone, especially when it comes to distortions and reactivity (age might play a role), so keep your chin up, things can get better

By the way, my distortions have dramatically improved since they first reared its ugly head back in 2021. I actually made a recent update about my distortions in another thread, here. 2024 has been good as well. I haven't experienced or noticed distortions much at all.

however, you'd habituated to it, which just feels remarkable to where I'm currently sat, I can't ever imagine just getting used to it

I think it's because I was hit with so many unusual ear conditions all at once — hyperacusis, reactivity, distortions, and palinacousis. I was overwhelmed and felt like I was at the point of no return. I was desperately hoping that at least some of the ear problems would die down by that point. Hyperacusis was my main concern. I started not to care about tinnitus despite it being really severe.

Thankfully, my distortions, hyperacusis, and palinacousis did diminish to great degrees. You can't win every battle, but I'm grateful for the victories I did achieve (especially hyperacusis in particular). I made it my mission to try to learn, adapt and accept whatever conditions remain which in my case is very loud tinnitus with reactivity.

It would be nice to check in from time to time and keep each other updated on the reactive tinnitus/dysacusis progress

Definitely. If the reactive component of my tinnitus ever completely subsides, this site will be the first to hear about it.

Isn't that the truth. I can only assume most of us have tried to explain our situation to our ENT; mine was absolutely clueless haha.

Yes, it was futile for me too. Even worse, when I mentioned my hearing distortions (along with reactive tinnitus and palinacousis) to the ENT, he actually thought I was crazy. He proceeded to ask me if I was hearing voices. It was in that moment I realized I was alone.

At least with tinnitus and perhaps hyperacusis, ENTs will recognize these conditions, but bring up dysacusis, palinacousis, or the reactive component of one's tinnitus, they will have no idea what you're talking about.

It's why you see me frequently discuss these hardly talked about conditions a lot here. As more people like us emerge in the future, they'll likely be confused, scared, and looking for answers. I hope they stumble upon my posts and others alike... I want to reassure them that they're not alone with these rarely mentioned conditions.

 

[BB23]

My distortions are completely gone but the TTTS is still there, along with hyperacusis, over 85-90 decibels, sometimes 100 decibels, when it comes to other frequencies.

 

[Cmspgran]

Thank you so much @ZFire for such a kind-hearted post; the end description of people feeling confused, scared, and looking for answers hits home hard and is so accurate for me personally.

I know you say it's early days for me, but at 10 months, I've started to lose hope for improvement; it's the reactive tinnitus that's the worst for me as it's an actual sensation of an electrical buzz, presumably a nerve problem, randomly firing off in response to external sound stimuli. I don't want to give up on life; I still want to be here and get the most out of it, and I have said to myself, just try to keep pressing forward in the hope in another year, maybe even two, the reactivity might back off somewhat.

I still have hope in Dr. Shore's device for us all, whether it's bog standard tinnitus, reactive, or variable. Trying not to place all my hope on it, but I'd be lying if I said the thought of it being out in another two years hasn't kept me going at times. It may do nothing, but without hope, what do you have left?

 

[MindOverMatter]

Keep your head up, @Cmspgran.

I've had reactive tinnitus for 4.5 years now, and I can tell it does get better. But there is no blueprint to get there. You've come a long way already, it seems like to me - no reason to lose hope. Be proud of yourself that you get up every day, even on your hardest days.

Be kind to yourself, make sure to have a good work-life balance (if you still work), make space for necessary time-outs, and get positive impulses. Indulge in hobbies and distractions you find joy in.

What I wouldn't do is go around and wait for some "magic cure." Your life might be restricted and not like you want it to be at the moment, but it can still be fulfilling.

 

[Cmspgran]

Keep your head up, @Cmspgran.

I've had reactive tinnitus for 4.5 years now, and I can tell it does get better. But there is no blueprint to get there. You've come a long way already, it seems like to me - no reason to lose hope. Be proud of yourself that you get up every day, even on your hardest days.

Be kind to yourself, make sure to have a good work-life balance (if you still work), make space for necessary time-outs, and get positive impulses. Indulge in hobbies and distractions you find joy in.

What I wouldn't do is go around and wait for some "magic cure." Your life might be restricted and not like you want it to be at the moment, but it can still be fulfilling.

Thank you @MindOverMatter for an equally heartfelt post. I have also read many of your posts that have kept me motivated. Just one recently to a member stating it's a marathon, not a race, gave me hope. I noticed you believe it's tied with hyperacusis. Do you do anything particular for your reactive element to improve, or was it a case of protection, patience, and time?

 

[MindOverMatter]

Thank you @MindOverMatter for an equally heartfelt post. I have also read many of your posts that have kept me motivated. Just one recently to a member stating it's a marathon, not a race, gave me hope. I noticed you believe it's tied with hyperacusis. Do you do anything particular for your reactive element to improve, or was it a case of protection, patience, and time?

Thanks for your kind words.

I did go to counseling/therapy with an audiologist experienced in tinnitus/hyperacusis - which gave me a lot of insights and great support (2.5 years).

With this and working with myself, came acceptance. Acceptance was the key to moving forward and slowly getting out of that continuous fight-or-flight mode.
The more alert we are, the more nervous the auditory system will be. This will also bring TTTS to the surface.

Time and patience are essential. Using soothing soundscapes - preferably natural if possible. Being outdoors. I got out even on all the bad days I had, even with roaring reactivity. But as time went by, it stressed me less - as long as I was not stressed out, overworked, fatigued, and tired.

There are more good days than days that challenge my mental well-being. On those good days, I feel a lot more gratitude in general due to these challenges.

I protect my ears only when needed: when on a plane, sometimes when I drive (if it's a longer trip), and when I'm around power tools and such. I also use Flare from time to time, just to ease down some frequencies. I don't do concerts, clubs, and such anymore. I'm fine with restaurants and pubs/cafes, as long as they are not extremely noisy.

I also use a hearing aid, with and without sound therapy, on a general basis 3-4 hrs each day when I'm home.

I would say the two most important factors for me, expect acceptance and stopping dwelling on all the "what ifs" and "why me", which is all counterintuitive, have been (to this day) correct work-life balance and being mindful of nature.

Stress is a major trigger. That's why I take breaks as far as possible when I need them.

 

[stacey]

My distortions are completely gone but the TTTS is still there, along with hyperacusis, over 85-90 decibels, sometimes 100 decibels, when it comes to other frequencies.

How long did you have distortions for?

 

[SumGuy]

My ear has these random muscle spasms, and they make like a grinding noise. Not sure if that's related to TTTS. I do notice I shy away from noise a bit, but I'm not sure if that's my fear of it or actual pain.

I hope you find some relief soon.

 

[ZFire]

My ear has these random muscle spasms, and they make like a grinding noise. Not sure if that's related to TTTS. I do notice I shy away from noise a bit, but I'm not sure if that's my fear of it or actual pain.

I hope you find some relief soon.

This doesn't sound like dysacusis. Your symptoms are more in line with TTTS or Middle Ear Myoclonus.

Dysacusis, or sound distortions, messes with how we perceive natural sounds or sounds in general. Simply put, it's like hearing things in a totally different way than most people are used to.

 

[BB23]

How long did you have distortions for?

5-6 months.

 

[gadacan]

I wanted to chime in that I also suffer from dysacusis. My tinnitus started as just a ringing sound (750 Hz to 1000 Hz) in one ear after I woke up. It continued to be somatically linked to yawning or exertion that put pressure on my right ear.

I would say about a month later, I started hearing a wobbling sound in the presence of background noises like fans, refrigerator motors, and even running water. The best description of the sound is when bubbles are escaping from a bottle or other vessel you just submerged in water.

It ramps up with the volume of the noise source. However, I have always perceived it as an external sound with a location, not as a tinnitus sound from inside the ear. The direction of the sound source (whether in front, behind me, or to the side) alters how much distortion I hear.

This eventually progressed to true bothersome tinnitus. The distortions remain. The only update is that I managed to clear my Eustachian tube slightly. It may have helped the distortions, but it may also be neurological. It tends to lessen when I am tired, like when waking up in the middle of the night or when exerting myself and energized. It's really moments of idleness when they become most noticeable. Also, I've had unilateral high-pitched hearing loss in the other ear for 20+ years, but the distortions seem to only be from the other ear.