Are There Any Success Stories for Moderate-Severe Dysacusis?

[weab00]

I've had tinnitus for a year and a half and habituated after about 6 months.

However, in the past month, I have seemed to have spontaneously gotten noxacusis, which I'm guessing is from cumulative ear damage.

As a music lover, the worst part about it is the dysacusis, as it makes songs sound like a high-pitched whistling mess. Daily sounds trigger it like running water, traffic/motors, my fridge, crickets, artificial sounds esp small speakers, etc.

It's been very draining and I'm wondering if this has subsided for other people to the point where they can go about their life and listen to music without constant sound distortions?

 

[Gordon Steinberg]

I also have had this for 6 weeks. I believe @Michael Leigh and @Tom Cnyc both had distortion that went away based on my reading, although I may be wrong.

 

[PugDog1]

I get distortion from time to time and I have severe sinus disease on the side that gets it. Do your ears pop?

Mine won't at all when I get the echoing and it's apparently something to do with my Eustachian tube. Some over the counter decongestant and heat usually helps

 

[Cameron Wagner]

I developed hyperacusis almost two months ago. I think I've had tinnitus much longer than that but I can't pinpoint when it started. Unfortunately about a week ago I started noticing distortion coming from things such as running water, fans, etc. Just yesterday I also noticed distortions from certain moments on TV. It's like a whistling kind of chirping noise.

I know exactly how you are feeling. I thought I had reached a place where I was able to manage the hyperacusis. And it feels like anytime I get to a stable state things become worse. I'm not exactly sure how to mange this anymore. I haven't been exposing myself to overly loud sounds. Just normal everyday noise. Life just doesn't seem that enjoyable anymore. I struggle to find things to take my mind of this and tell myself it can't possibly get any worse. But I'm not entirely convinced anymore.

I have an appointment with an audiologist in a couple days. I'll see where things go from there. I'm really hoping the distortions fade over time. Sorry you are going through this. I know it's a really rough thing to handle everyday.

 

[weab00]

I developed hyperacusis almost two months ago. I think I've had tinnitus much longer than that but I can't pinpoint when it started. Unfortunately about a week ago I started noticing distortion coming from things such as running water, fans, etc. Just yesterday I also noticed distortions from certain moments on TV. It's like a whistling kind of chirping noise.

I know exactly how you are feeling. I thought I had reached a place where I was able to manage the hyperacusis. And it feels like anytime I get to a stable state things become worse. I'm not exactly sure how to mange this anymore. I haven't been exposing myself to overly loud sounds. Just normal everyday noise. Life just doesn't seem that enjoyable anymore. I struggle to find things to take my mind of this and tell myself it can't possibly get any worse. But I'm not entirely convinced anymore.

I have an appointment with an audiologist in a couple days. I'll see where things go from there. I'm really hoping the distortions fade over time. Sorry you are going through this. I know it's a really rough thing to handle everyday.

I'm right there with you. They say the best thing to do when you get tinnitus is to engage in your hobbies to distract yourself, but I've basically had to give up most of my hobbies and seclude myself in my bedroom, otherwise I get pain, distortions, and reactive tinnitus. I have not been coping well at all and oftentimes feel like giving up because the struggle is endless, as you already know. I also seem to be getting worse and have been protecting/not exposing myself, it's like our ear's defense line is broken or something and the tinnitus/pain keeps getting worse after completely normal noises in the 50-70dB range.

 

[tictacjak]

Literally scoured the internet trying to identify my symptoms and came across this thread. I'm having the exact same symptoms! For about a month now any kind of continuous noise (music, fan blowing, faucet running) has had this weird high pitched undertone to it. Listening to music is awful now. Has it gone away for any of you guys?

 

[kenzo178]

Literally scoured the internet trying to identify my symptoms and came across this thread. I'm having the exact same symptoms! For about a month now any kind of continuous noise (music, fan blowing, faucet running) has had this weird high pitched undertone to it. Listening to music is awful now. Has it gone away for any of you guys?

Would you say your Undertone sounds little squeaky? I have this same since 7 Weeks, with the Tinnitus i can Live but this Distortion and Squeak Undertone over Music, Voices drives me crazy, hope this Nightmare will end up as fast as possible for us

 

[GSC]

I have had success with this.

 

[Diesel]

I had an unexpected setback in late June that resulted in the OP's description at a very noticeable level over the summer. Since about October, it is about 10% of what it was over the summer and still seems to be improving. Every once in a while I notice little artifacts of the distortions from fans and running water, but it fluctuates almost to zero for the most part.

 

[tictacjak]

Would you say your Undertone sounds little squeaky? I have this same since 7 Weeks, with the Tinnitus i can Live but this Distortion and Squeak Undertone over Music, Voices drives me crazy, hope this Nightmare will end up as fast as possible for us

Yeah, kind of like a squeak I guess but higher pitched. It's really only triggered by noise. If I'm in a silent room I only hear a slight morse code like beeping in my left ear. Listening to music is the worst. It's like certain instruments have that high pitched squeak attached to it.

 

[kenzo178]

Yeah, kind of like a squeak I guess but higher pitched. It's really only triggered by noise. If I'm in a silent room I only hear a slight morse code like beeping in my left ear. Listening to music is the worst. It's like certain instruments have that high pitched squeak attached to it.

Sounds like we 2 sit 100% in the same boat. I get this squeak only over voices, music, TV... especially female voices and high-pitch voices triggers this squeak and it's louder than the voices on top of it.

 

[weab00]

I'm still getting this unfortunately, it fluctuates with my hyperacusis. It gets really bad after a setback but the trend seems to be up, even though it's an agonizingly slow and bumpy journey.

 

[tictacjak]

I'm still getting this unfortunately, it fluctuates with my hyperacusis. It gets really bad after a setback but the trend seems to be up, even though it's an agonizingly slow and bumpy journey.

Hoping it continues to improve for you! This shit sucks

 

[Jack V]

I've been experimenting with a hearing aid / masker and, working with an audiologist who has the software to program it, programming custom settings with different EQ curves.

Just throwing it out there, but perhaps doing something similar, you could create custom EQ curves that reduce high frequencies, or filter the high frequencies that are particularly bothersome - might provide some relief?

 

[kenzo178]

I've been experimenting with a hearing aid / masker and, working with an audiologist who has the software to program it, programming custom settings with different EQ curves.

Just throwing it out there, but perhaps doing something similar, you could create custom EQ curves that reduce high frequencies, or filter the high frequencies that are particularly bothersome - might provide some relief?

I think I have problems with high voices, because if I listen for example to Sunrise Avenue - Fairytale Gone Bad I can hear it 80% fine until 0:46 but when he raises his voice, I hear a squeak.

Do you have this same problem?

 

[Ava Lugo]

I'm still getting this unfortunately, it fluctuates with my hyperacusis. It gets really bad after a setback but the trend seems to be up, even though it's an agonizingly slow and bumpy journey.

I got a question for you because you seem like you have some good theories about distortions.

Since I've had my severe reactive tinnitus for a year now and my distortions, I've been wondering why some people's reactive tinnitus and distortions go away after a few months while others like myself still suffer badly from it a year later?

I wonder if the reason the reactiveness goes away for some people is because of the amount of hearing damage they have or maybe they have lesser inflammation in the ear or it depends on the cause. Like maybe distortions and reactive tinnitus is more likely to resolve or go away in a few months or a year if it's noise or stress induced versus from a viral infection.

Any theories why some are lucky enough to have theirs go away after a few months and others still suffer with a bad degree of it a year later?

 

[__nico__]

I got a question for you because you seem like you have some good theories about distortions.

Since I've had my severe reactive tinnitus for a year now and my distortions, I've been wondering why some people's reactive tinnitus and distortions go away after a few months while others like myself still suffer badly from it a year later?

I wonder if the reason the reactiveness goes away for some people is because of the amount of hearing damage they have or maybe they have lesser inflammation in the ear or it depends on the cause. Like maybe distortions and reactive tinnitus is more likely to resolve or go away in a few months or a year if it's noise or stress induced versus from a viral infection.

Any theories why some are lucky enough to have theirs go away after a few months and others still suffer with a bad degree of it a year later?

Probably depends on whether or not the hearing loss is temporary or permanent. If the distortions/dysacusis is from cumulative damage, i.e. loud headphones for years it's more than likely permanent damage and will never go away truly. That said I have had dysacusis for like a week ago, it fluctuates with prednisone, was pretty bad a few hours ago but tolerable now... hoping and praying it goes away.

 

[Jack V]

I think I have problems with high voices, because if I listen for example to Sunrise Avenue - Fairytale Gone Bad I can hear it 80% fine until 0:46 but when he raises his voice, I hear a squeak.

Do you have this same problem?

I'm not sure I have *that* problem, but tinnitus that sometimes "resonates" or escalates with certain sounds.

Incidentally, I listened to the song. I hear how he raises his voice at 0:46, but also notice the addition of a buzzy synth sound at that particular point as well.

 

[__nico__]

Has anyone here had their dysacusis completely subside?

I think the trend is upwards for me, but I am worried. Everything is pretty much fine for me except music, and that wasn't the case 3 weeks ago but I'm worried this is cochlear synaptopathy that cant be cured. Like I'm at the level where I can function in public now aside from sensitivity to certain frequencies but music has not budged an inch...

 

[__nico__]

I think I have problems with high voices, because if I listen for example to Sunrise Avenue - Fairytale Gone Bad I can hear it 80% fine until 0:46 but when he raises his voice, I hear a squeak.

Do you have this same problem?

How is your dysacusis now?

 

[FGG]

Has anyone here had their dysacusis completely subside?

I think the trend is upwards for me, but I am worried. Everything is pretty much fine for me except music, and that wasn't the case 3 weeks ago but I'm worried this is cochlear synaptopathy that cant be cured. Like I'm at the level where I can function in public now aside from sensitivity to certain frequencies but music has not budged an inch...

This is me. Everything sounds mostly normal (except for the tinnitus on top of it) except for music.

It's been two years. Music has improved from screeching alien sounds to just "bad." The thing that has helped me the most on that front is bio-identical Aldosterone which I tried as a last ditch effort. It's very difficult to get and I had to find a US doctor and a Canadian doctor willing to work together on a joint prescription.

I'm about 5 months into Aldosterone and the effects peak at about 7 months I am told. It hasn't fixed my high frequency hearing loss obviously (which is hair cell loss) but my sub 100 Hz hearing is better (it was/is abysmal) and that helps balance music a little better.

There are a few theories on why it helps some people with LF hearing loss (look up Dr. Jonathon Wright) but one is that one of the reasons steroids like Prednisone help is it acts on the mineralocorticoid receptors as well as the glucocorticoid receptors. Bio-identical Aldosterone just acts on the mineralocorticoid receptor. So it's like taking long term steroids more safely.

In my particular case, Azithromycin also damages the Na/K channels in the cochlea so I'm attempting to recruit more with Aldosterone (this is a longer explanation why that would work).

Anyway, this is a long way of saying though I am now deaf over 12000 Hz, the low frequency loss is what is ruining music the most for me. Since yours is due to noise and not Azithromycin like mine was, I wonder if you have a mild secondary hydrops (secondary to noise) and if a diuretic might help.

You might (and I might) also have synaptopathy but there is a drug in clinical trials that just released great results. Check out the OTO-413 thread.

 

[kenzo178]

How is your dysacusis now?

Good to hear you have had improvements. Mine is still bad since it started 10 weeks ago.

I know how you feel about the music. I miss it too but I also get distortions over fan, water heater... even when a dog barks I hear a squeak instead of barking.

 

[__nico__]

This is me. Everything sounds mostly normal (except for the tinnitus on top of it) except for music.

It's been two years. Music has improved from screeching alien sounds to just "bad." The thing that has helped me the most on that front is bio-identical Aldosterone which I tried as a last ditch effort. It's very difficult to get and I had to find a US doctor and a Canadian doctor willing to work together on a joint prescription.

I'm about 5 months into Aldosterone and the effects peak at about 7 months I am told. It hasn't fixed my high frequency hearing loss obviously (which is hair cell loss) but my sub 100 Hz hearing is better (it was/is abysmal) and that helps balance music a little better.

There are a few theories on why it helps some people with LF hearing loss (look up Dr. Jonathon Wright) but one is that one of the reasons steroids like Prednisone help is it acts on the mineralocorticoid receptors as well as the glucocorticoid receptors. Bio-identical Aldosterone just acts on the mineralocorticoid receptor. So it's like taking long term steroids more safely.

In my particular case, Azithromycin also damages the Na/K channels in the cochlea so I'm attempting to recruit more with Aldosterone (this is a longer explanation why that would work).

Anyway, this is a long way of saying though I am now deaf over 12000 Hz, the low frequency loss is what is ruining music the most for me. Since yours is due to noise and not Azithromycin like mine was, I wonder if you have a mild secondary hydrops (secondary to noise) and if a diuretic might help.

You might (and I might) also have synaptopathy but there is a drug in clinical trials that just released great results. Check out the OTO-413 thread.

Last night I had a sudden improvement in music where I was able to perceive dynamic range again and more finer details of things that used to be horribly distorted.

That improvement has carried over today. So maybe there is hope.

 

[Ava Lugo]

Last night I had a sudden improvement in music where I was able to perceive dynamic range again and more finer details of things that used to be horribly distorted.

That improvement has carried over today. So maybe there is hope.

What did you do to improve it? What can I do to improve mine? Do you take any medications that can help? If you have hearing loss and it improved for you then I'm hoping that means it could improve for me as well.

 

[__nico__]

What did you do to improve it? What can I do to improve mine? Do you take any medications that can help? If you have hearing loss and it improved for you then I'm hoping that means it could improve for me as well.

I just stayed in silence as much as possible at first and then after about 2 weeks I watched TV at extremely low volumes from time to time. And the noise of my air conditioner stopped bothering me after a while, it's not loud. My threshold for discomfort/slight pain is about 70/80 dB so on that front it is very mild.

I did have horrible, horrible noxacusis almost a month ago (my footsteps/voice/leaves rustling/conversations were VERY painful physically) but Prednisone + Methylprednisolone cleared this up in a few days. So I am VERY lucky but unfortunately it did nothing for the dysacusis. My dysacusis seems to frequently change and fluctuate on a day to day basis which is very weird. I also have eustachian tube issues and was recently prescribed Flonase and I also take Sudafed twice a day and this seems to help...

The broken speaker effect is slowly fading away (which could be secondary hydrops as @FGG suggests) but the slight diplacusis/whistling and screeching overtones I get in music, white noise, and pretty much everything aren't budging an inch. Bear in mind this is only the 3rd week of me having this so I'm still in the very acute phase, though in the past I've had very minor problems of diplacusis that would clear up in a day.

Last night I had an extremely sudden improvement that was actually here to stay, not long after I had posted the "music has not budged an inch" remark.

If these problems persist, by March I am going to try Keppra.

 

[FGG]

I just stayed in silence as much as possible at first and then after about 2 weeks I watched TV at extremely low volumes from time to time. And the noise of my air conditioner stopped bothering me after a while, it's not loud. My threshold for discomfort/slight pain is about 70/80 dB so on that front it is very mild.

I did have horrible, horrible noxacusis almost a month ago (my footsteps/voice/leaves rustling/conversations were VERY painful physically) but Prednisone + Methylprednisolone cleared this up in a few days. So I am VERY lucky but unfortunately it did nothing for the dysacusis. My dysacusis seems to frequently change and fluctuate on a day to day basis which is very weird. I also have eustachian tube issues and was recently prescribed Flonase and I also take Sudafed twice a day and this seems to help...

The broken speaker effect is slowly fading away (which could be secondary hydrops as @FGG suggests) but the slight diplacusis/whistling and screeching overtones I get in music, white noise, and pretty much everything aren't budging an inch. Bear in mind this is only the 3rd week of me having this so I'm still in the very acute phase, though in the past I've had very minor problems of diplacusis that would clear up in a day.

Last night I had an extremely sudden improvement that was actually here to stay, not long after I had posted the "music has not budged an inch" remark.

If these problems persist, by March I am going to try Keppra.

That's a very good sign. I hope you get to have music back soon.

It's been over two years for me and I grieve for it constantly.

 

[__nico__]

I have had success with this.

Can you elaborate?

 

[vermillion]

It's been over two years for me and I grieve for it constantly.

It has been over two years for me too.

I understand how this feels.

Is the Aldosterone treatment helping you?

@__nico__, great news.

 

[FGG]

It has been over two years for me too.

I understand how this feels.

Is the Aldosterone treatment helping you?

It did help somewhat. And that's kind of concerning. Azithromycin ototoxicity is unique in that it poisons the Na/K ion channels which very few other toxins do (something called Ouabain does and Hydroxychloroquine does too). While Aldosterone makes it so I have some return of low frequency hearing, it's not enough to combat the "clipped wobble" I hear in the lower end.

Basically, it helped enough for me to know that it's one of my main problems. But also enough to know that I am kind of screwed too (barring a miracle) unless there is a further effect after prolonged use (I'm on month 7).

 

[shelbynn]

I have had success with this.

Do you have a success story posted anywhere we could read?