People with Dysacusis, Distortions or Loudness Hyperacusis — Describe Your Symptoms!

IF ANYBODY WITH DYSACUSIS, DISTORTIONS, OR LOUDNESS HYPERACUSIS CAN PLEASE DESCRIBE WITH THE UTMOST DETAIL POSSIBLE ALL OF YOUR SYMPTOMS AND EXPERIENCES I WOULD GREATLY APPRECIATE YOU.

As the title of the thread says. I am really in desperate need of support today. I am at my wits' end.

Does anyone else experience "clipping" of external sounds, namely, all artificial audio sounding like the volume has been overdriven and it's like a speaker that can't go any louder?

The distortions I want to distinguish from "reactive tinnitus", as "reactive tinnitus" seems to be just what the name implies: Tinnitus that reacts to external noise. That's in the mind.

What I have isn't really sound sensitivity at all, though I used to have that. It's just that all sounds, but especially artificial audio, sound overdriven. My distance or proximity to the source, NOR the volume of source audio HAVE ANY EFFECT ON MY DISTORTIONS.

Does anyone have this? Is this sensorineural hearing loss that's permanent?

I really can't go on with this. I'm beginning to believe this was caused by Prednisone withdrawal TWO TIMES as each course of Prednisone I've been on made this WORSE. With the first course, which was for SSHL, being what caused this after coming off the drug and then rapidly worsening again coming down off the second course, which was about a month after the first, I went for a Prednisone prescription a second time because I was panicked.

There is also something else I used to have, which has mostly faded during a course of Prednisone but it was a trade off mostly for the distortions I have now. I'll link a post from someone with identical symptoms:

@Jason C's distortions are extremely similar to what I experience as well as far as I can tell.

 

Hey @__nico__, I'm really sorry to hear you're going through all this. The willpower and strength one needs to get through something like this is immense. You are already incredibly brave and strong.

I've read through some of your posts and I can tell you that as far as hyperacusis is concerned (I will come on to the distortion issue in a minute), I was once in a similar position - my own voice and footsteps causing me pain, typing on a keyboard causing me pain, rustling of leaves causing pain etc. It was unbearable and I came very close to ending it. The one thing that stopped me though was a life experience I already had: I had already lost my father to suicide. When one commits suicide, one thinks they are solving their problems, but they are actually passing them on to others, and those others suffer. My dad's suicide destroyed my family. I hope you take this on board before making any drastic decision.

As far as my own hyperacusis is concerned, I am glad to say it has gotten better, but it has taken a long time (7 months). Others take even longer - sometimes more than 2 years. I am nowhere near back to normal, but I am able at least to live a quiet life at home with not much pain, albeit while taking precautions (wearing ear defenders doing daily tasks etc.). This is obviously not a normal life, but with stoicism one learns to accept it for what it is. I also know many of us live in hope that in 2-3 years we will be cured from FX-322 - hope is a powerful thing, and I urge you to find that hope to get you through this tough moment.

As far as the distortion issues are concerned, I can't say this is something I've had personally, although I know others on here have experienced it. Like hyperacusis, I have read that the distortion issues do usually improve but they take time as well. There was a study done not too long ago that showed cochlea inflammation and neuroinflammation in the auditory cortex can take 6 to 9 months to come down in rats. It's still anyone's guess whether this inflammation causes hyperacusis/distortions, but it is interesting to me that many see improvements around or after this period has elapsed.

I suppose what I'm trying to say is, before making any drastic decision, to give your body a chance to recover - you owe that to yourself. I think one needs to have this for at least 2 years before coming to the conclusion that it is "permanent", and even then, in 2 years the cure should be round the corner.

So in the meantime, I would do everything you can to give your body that chance to recover. Eat well, sleep well and supplement well. Protect your ears at all costs. Don't listen to music or any other artificial audio source - phone, laptop whatever. I know this is fucking hard but you have to do it (I was a musician for 20 years). Protect when you know something will cause you pain/distortion and remove protection when you know you are in a safe place.

As far as supplementation is concerned, I would give the following a try: Magnesium (Calm by Natural Vitality has been the best I've tried), NAC, Astaxanthin, Vitamin A, Vitamin C, Vitamin E, Quercetin, Tru Niagen (Nicotimanide Riboside), Resveratrol, dark cacoa (95% to 100%) and curcumin (preferably organic turmeric in powdered form, two teaspoons a day with black pepper and oil - not pills). Magnesium made the biggest difference for me - my keyboard typing pain and voice pain disappeared within 20 minutes of taking it and increased my pain threshold by some 30% I would say. It also helped control the anxiety this condition caused. I think everything else, combined with the passage of time, have increased my pain threshold by another 20-30%. I know I didn't have distortion, but the underlying pathologies do not seem to be too different.

You have to think about this situation as almost as if you're a sportsman who's had a really, really bad injury and you now have to go through rehab. Some manage to play again while others don't, but at least they're able to do other things and live some kind of life. Try to be scientific and rigorous about it.

Once again, I'm sorry you're going through this. This journey is for the strong.

 

So I have moderate(?) loudness hyperacusis, TTTS, and I guess what you could call distortions. I'll occasionally get pain. I know you mentioned you saw some of my other posts so I apologise if I repeat myself here.

As far as my loudness hyperacusis and TTTS go:
I can't leave the house, or even do things in the house, without earplugs or muffs. Mild sounds like paper, closing a tupperware container, even plastic on plastic, is too much for me and makes my TTTS act up. It's a brain shock and discomfort more than pain. I'd estimate my LDLs to be in the 40s or 50s dB. My TTTS is predominant in my left ear. Things heard with my right ear can even trigger it. My right ear occasionally flares up.

Distortions:
If you read my first thread already then you'll know that a few days after I inhaled the chemicals, songs and video game sounds I was familiar with sounded to be down a few pitches. I wasn't sure if this was hearing loss of higher frequencies or what, I don't know how that works. I haven't been tested for any of that.

Interesting you mention prednisone because I was actually on it for 5 days after the incident for breathing issues from my accident, had no idea at the time it was for hearing too (I didn't have issues at that point other than pitch). If I recall, I still had the slight issues while on the prednisone. But it wasn't major. My loudness hyperacusis didn't fully kick in until 2 weeks later long after my course ended. I don't think it was related but who knows.

My issues began late June... I temporarily was cured early July for a week, but it came back. Developed tinnitus end of July. I had listened to music in July but didn't have the distortions or imprinting then. Stopped listening to music around August, mid August is when I went from extremely mild to moderate.

So I recall back when I still used phones (albeit on the lowest volume with my thumb shoved up the speaker), the hold music would be too much for me. Then my reactive tinnitus would start parroting bits of that music after. I didn't listen to music at all for months after so I don't have an accurate way of gauging the progression of distortions sadly.

But just the other week I tried to listen to music again for the first time since August. Everything sounded like it had a "lo-fi" filter on it, like it was an old VHS tape from the 80s. That's the best way I can describe it. It was the low pitch issue but cranked up to 11. It wasn't unbearable necessarily, no squeaking or beeping. It was just like, vaporwave versions of things I once liked. But I noticed after one song, which had chanting, and my tinnitus reacted to my PC fan and "imprinted" the chanting on it.

I won't reattempt music for a long time and as is I avoid all artificial audio. I know it sucks but I have to agree with everything @Aaron91 has to say. Give yourself the best chance of recovery. Avoid audio for now and things that don't feel good, are loud, or high frequency, as much as it sucks. I burst into tears after hearing music for the first time in months but the next day I felt more sensitive. I assume this was due to frequencies, I was at 20db the whole time.

Other people who still listen to music recommend high quality speakers. I don't know much about that but I personally wouldn't risk it at this point in the game.

I was never a musician but music made up a huge part of my hobby and I do miss it dearly. I don't want to attempt to try to say I understand how it feels because I know how rewarding it is for musicians to create. I'm an artist and if I went blind or got VSS I don't even know what I'd do. So my advice may not be the easiest but... Out of "sight" out of mind. When I listened to music with again, it felt good, but at the same time it was a painful reminder that my ears are broken. It's so tempting to go back to it when it's been so long. But what's left for you isn't what you once knew, and it is could potentially hurt you. So the best choice is to avoid right now. As much as it sucks.

As Aaron said, hope can go a long way. I'm trying to think of this all as a big sacrifice, and then in the end it will be much more rewarding once you get a taste of what you once loved again.

I hope this helps give you any idea, sorry for going on so long. I mostly wanted to go over the most relevant stuff for your case.

 

Thank you for your words, those are supplements I've looked at. I'm also trying to get a prescription for Keppra. I met two people who had exactly my problem and were 90% cured from it.

 

That's really good to hear - how long did it take them to recover from their distortions? I hope that gives you the hope you need.

I really, really recommend Magnesium (especially Natural Vitality Calm if you can get it, because the other forms/brands of magnesium haven't helped me at all and I think this may be down to the difference in bioavailability between supplements). This condition causes a huge amount of anxiety and stress. It is known that stress that depletes magnesium levels in the body at a disproportionate rate, and when our magnesium levels drop we are prone to vasoconstriction of the cochlea (limited blood flow). In other words, this condition actually causes issues that lead to a self-fulfilling cycle of no healing. We need that blood flow to give our ears the best chance of healing. I can't guarantee anything, but the instantaneous 20% improvement it gave me (literally within 20-30 mins) brought me back from the brink.

As for Vitamins A, C, E and NAC, there was a study that showed taking all these together (with magnesium) helped limit hearing damage from oxidative stress in chinchillas. The effect was only seen though when they were all taken together. Add Curcumin and Astaxanthin (two of the most powerful antioxidants) to that and you got something pretty potent. Cocoa is there for increase BDNF production for synapse repair, but you have to take it every day for 12 weeks in its purest form to see benefit. It's anyone's guess though whether this will actually fix your synapses or not (and whether synapses are the issue).

As for Keppra, I've never tried it, but I would honestly try some natural stuff first before putting any other medication in your body. Keppra won't fix any mineral deficiency you may have that may be making things worse.

 

Agreed. Personally speaking, this condition has given me a huge amount of perspective in life, and I know that, assuming I'm able to come through the other end and recover from it, I believe the lessons and wisdom I will have taken from the experience will allow me to live a much happier and fulfilling life than I otherwise may have had had I never developed this condition and I will be a better person for it as well.

 

So can damaged synapses be repaired? I've always wondered because I had MUCH MUCH MUCH worse distortions early on when I developed hyperacusis, but it got better within a week and then flatlined to what I'm at now.

 

The answer is we can't know for sure. The recent OTO-413 Phase 1 clinical trial results, where they administered a BDNF drug locally to the cochlea, showed a noticeable improvement in hidden hearing loss patients against control groups, which would suggest that synapse repair does help hearing. We can't know for sure though without a histological report, but then again the same goes for any other drug in this part of the field I guess.

Now, whether hidden hearing loss improvement as a result of synapse repair also helps hyperacusis is speculation, but it wouldn't surprise me if somehow it did. There was a recent animal study that came out a few weeks ago which showed that after exposure to dangerous levels of noise, there was an increase in the number of synapses between OHCs and type II afferent fibres (the fibres responsible for pain transmission) in parallel to a decrease in synapses between IHCs and type I afferent fibres (the fibres responsible for sound transmission). In other words, an inverse relationship. So it would stand to reason that repairing those synapses would increase the input back to the IHCs, and one could speculate that this increased input would reverse the maladaptive plasticity that have occured in the type IIs.

So you're probably wondering: how can we increase our BDNF levels in the cochlea without being in the OTO-413 trial or waiting another 3 years (or 2 years in the case of FX-322)? Sadly, BDNF is produced in the brain only (it stands for brain-derived neurotrophic factor). I am aware of two studies though which showed how we can increase our brain's production of BDNF. The first one was through high intensity exercise (I believe lifting weights specifically) and the other was through drinking very, very dark cocoa - as pure as you can get. I do remember though they only found a measurable increase in BDNF levels after drinking dark cocoa every day for 12 weeks straight. I did do it myself for about two weeks but it was difficult to maintain (pure dark cocoa is really bitter as hell and you have to drink it straight to get maximum benefit). I may try again though as I always felt better (generally speaking, not my ears that much) after drinking it. It's rich in Magnesium too, apparently.

 

How hard is it to get Keppra I wonder...?

I feel like I’ll have to jump through many hoops to get it. I heard there are a lot of ENT doctors that will refuse to prescribe it so what could I do when they refuse to prescribe it? Go to a neurologist? Would I need an MRI before asking for a prescription?

 

You need a neurologist to prescribe it.

 

Hmmm ok. That makes sense. I really don't want to be a hermit for another month so I really, really need to get some relief from this horrid condition as fast as possible. I'm glad I don't have pain hyperacusis and sound sensitivity thankfully, my experience with just a few days of that were the absolute worse, but the sound distortions need to go 100% or I'll surely never be happy again. Admittedly I have a very mild case compared to some but the PTSD this will give me is immeasurable and I know 100% I am DEDICATING MY FUCKING LIFE TO TINNITUS AND HYPERACUSIS AWARENESS AND FUNDING RESEARCH AND CURES. I'm sick not only of how depressed this makes me but the impact it's having on everyone else: my family, my partner, etc. I can't even drive anymore.

Anyway I am going to pull strings for a Keppra prescription but until then I will stock up on uncouth amounts of supplements. I wish I could cure all of you.

 

Is it possible the neurologist will prescribe it without an MRI? I’m having difficulty getting an MRI at the moment but that’s a personal thing.

 

If you show him you've done substantial research then it should not be necessary.

 

It depends on your doctor. If they’re willing to take anecdotal claims seriously, it probably shouldn’t be too difficult. My family doctor gave me my anti convulsants but I also have nerve pain accompanying my tinnitus.

On the other hand if your doctor isn’t as open and stuck in their ways and you go in talking about “reactive“ tinnitus and how you want a relatively strong seizure medication to treat an issue doctors view as no big deal they might make you jump through hoops

I don’t see why an MRI would be required.
There’s actually a research study online that showed that a similar medication - Gabapentin, was effective at “treating” tinnitus for some people so you could take something like that with you to help

 

I just asked mine for Keppra and they prescribed it to me, after I had explained what was going on and the rationale for the medication. No MRI needed.

 

@Aaron91 I just got the brand of Magnesium you recommended. Let's hope it does something, taking 1g now.

 

This might be a silly question but... would these medications still possibly work for me even if I've had bad reactive tinnitus and distortions for a little over a year? Would it matter if I've had it for a year or not?

I know with steroids it can be way too late and I’m still learning about Keppra and Gabapentin so that’s why I ask.

 

I don't see why they wouldn't! I took an anti-convulsant after having tinnitus for a year and it made it very soft and basically non-existent (one day only) but that shows that it has the capability to influence even chronic tinnitus. Worth a try. Steroids are a bit of a different drug, to my understanding they're mainly for inflammation while anti-convulsants calm hyperactivity in the brain.

 

Good to hear, any improvements?

By the way, I've been doing some more research on distortion issues and how the ear processes sound. It was a surprise to me to read today in this study that the healthy cochlea actually produces its own distortion. I believe these may be more commonly referred to as harmonics. I think anyone suffering from this issue should read the entire paper as there are many interesting takeaways, but here is just one that caught my eye:

"Accordingly, cochlear damage that destroys outer hair cells but leaves inner hair cells apparently intact abolishes distortion products in auditory-nerve responses"

I wonder then if the opposite is true: distortion issues occur when IHCs are destroyed but OHCs remain intact. If so, a drug like FX-322 could help here as well.

 

I took it twice yesterday and all it did was silence my tinnitus, which to be honest I don't even care about at all. Did nothing for my hyperacusis or my anxiety.

 

How's that been going for you @GBB?

I've been trying CBD oil. It might be helping with sleep and I'm getting more static instead of ringing, but the reactivity and distortions so far are still there.

Kudos to everyone dealing with this. If I could again listen to music without random beeps or low thuds of epic volume in every damn speaker I try to mask with I'll be quite happy to live with static / high ringing.

 

It’s only been a week - I’ll provide an update in 3 more weeks - it hasn’t gotten any worse so far but I don’t want to draw conclusions too early.

 

Symptoms:
Constant bilateral multi-tonal tinnitus.
Hyperacusis + Sensitivity with intermittent ear pain.
TTTS.

Now...
In addition to the above, I can hear extra sounds such as pure tone sine wave frequencies and clicking sounds. For example I hear sounds, like whistles or wood cracking, over the external sounds that my ears catch. As other people described already here, those sounds I hear loud and clear when I listen to an outside sound (in addition to that outside sound). I am dealing with this situation for 2 years already. Unfortunately it got worse recently. I have developed new louder distortion tones. What I have noticed in my situation is that sometimes after being exposed to environmental noise, and being back home in complete silence, these distortion/dysacusis sounds can be heard as part of my constant tinnitus, but they are very silent in that context. In general fridges' humming noise, shower's noise, flushing noise, traffic's noise, waves, rain, brushing my teeth, the occlusion of my breathing, few human voices, music, tv, any white-ish kind of noise etc...they all produce those tormenting whistles. The louder (and further) the source, the louder the whistles. I could draw a parallel to the feedback sound of a microphone that is placed close to a speaker.

It is extremely horrible guys. Those who deal with it, I would appreciate if you connect with me and share your experience and things you have tried that might have helped. When I first got that and shared my concern over this condition with my doctor (who supposedly has been following the research on tinnitus), she didn't even know what was I talking about!

 

WARNING: THE VIDEO CONTAINS POSSIBLY IRRITATING SOUNDS FOR PEOPLE WITH HYPERACUSIS, REACTIVE TINNITUS, HEARING SENSITIVITY ETC.
ADJUST ACCORDINGLY!

I tried to simulate this horrible phenomenon which seems hard to classify or define whether it falls in the spectrum of hyperacusis. I had a hard time finding samples for all of my distortion tones that I perceive, therefore I have only included two of them and as much accurate as possible.

I haven't included my constant tinnitus in it.

dysacusis

 

Damn, this is stupidly close to what happens to me and I hear that tone too, but the tone doesn't react, it's ever present or over low frequency quiet sounds, only like fans/appliances. It seems to depend on CSF / BP too (much worse after pushups for me). That sound could turn into something in the back of my head and "floating around" so to speak and quieter when I mask for enough time. I get more beeping and low humming (those drive me ape shit), which are 200% unmaskable.

When and how did that wine glass hum start for you?

 

Hello @Matchbox.
First of all I find interesting the physical aspect you describe, such as the intensification of symptoms after working out. I do get that as well, therefore I stopped working out. The wine humming started 7 days ago. However, I have dealt with distortions for more than 2.5-3 years. Something like that. I do believe that there's a strong correlation with my sound sensitivity, considering that the latter has intensified as well, along with the manifestation of my new distortion sounds.

 

Yikes. How did your distortions manifest / start?
Loud sounds? Just happened one day?

 

Gradually. However this last worsening, completely out of the blue. I woke up and the new distortions were there. But gradually I see that my sensitivity is getting worse too, which means that it's a generalized worsening of my hyperacusis. My tolerance reduced...

It is really a big problem.

 

Sounds a lot like me, but my initial tinnitus was brought on by noise, and potentially steroids and furthermore barotrauma.

I was asking how your tinnitus initially came to be / got much worse... other than the out of the blue worsening.

(I had that too, was just working with some light white noise on as it was getting later with the sun setting, and suddenly as it got darker, BAM, wine glass humming).

 

That's pretty heartbreaking @Matchbox. I'm deeply sorry to read about your humming. My initial onset is a mystery but I came to the conclusion that it was the drug Fluconazole. Huge bummer.