Can Drugs or Supplements Help Sound Distortions/Dysacusis?

[SadMan]

Not sure if this is Keppra or natural healing, as 250mg is an extremely low dose.

I started Keppra 500 mg yesterday. I am planning to take 1000 mg today. I also have hyperacusis, reactive tinnitus and dysacusis. We are in the same ship, good luck.

 

[__nico__]

I totally understand what you guys are dealing with.

I would be careful with steroids. I took them for my distortions, things were great while on them, quite minimal tinnitus and distortions were there but reduced. The DAY I finished my course I got a low humming sound that night, followed by high frequency hearing loss in the morning (nothing sounded right)...that eventually went away... but then the distortions became FAR worse than what I started with.

Today has been absolutely brutal for me, I just seem to keep getting worse as time progresses.

I did have "a shot" of scotch the night before, but certainly wasn't tipsy but low and behold woke up to low growling nonetheless.

I was trying to do a meeting at work and have this "new" humming (sounds like a sander being pressed firmly into wood while on) reactive tone which decides to randomly and rapidly go on, off, on, off, on, on, on, off, on, off... overlaid on fans/sounds in my head.

The meeting did not go well, I could barely fucking function much less make coherent sentences with it going off at random in my right ear/skull.

How doctors can simply say "have you tried mindfulness" makes me want to stab them in the face.

So what's your theory/mechanism whereby steroids cause dysacusis? An autoimmune disorder? I do have a defective adrenal gland, and my hearing got worse with each (2) courses of Prednisone I did. I'm never touching that shit again. It gave me a bunch of low tones too. And now I've got white flashes in my eye, visual disturbances, sparkles in response to changes in light, and visual snow.

 

[Matchbox]

So what's your theory/mechanism whereby steroids cause dysacusis? An autoimmune disorder? I do have a defective adrenal gland, and my hearing got worse with each (2) courses of Prednisone I did. I'm never touching that shit again. It gave me a bunch of low tones too. And now I've got white flashes in my eye, visual disturbances, sparkles in response to changes in light, and visual snow.

Wow. That sounds point for point like me, but only when I stopped the Prednisone. My tones are reactive too and cause sound distortion...

Theory is rebound inflammation / immune response as your body gets used to the higher levels of synthetic cortisol, Prednisone is way stronger than cortisol, and those levels need to change over the day too, plus your adrenal gland might not produce it at the same rate for a long while... so any taper is kind of a joke imo, moreso than benzos even. Why my "previous" doctor cut me off after 3 weeks to 0 made no sense to me saying "no it shouldn't be an issue". Prednisone might help but without the right inflammatory response coming off of it or the right immune reaction, what's the point? You'd have to stay on it which is also very bad.

I think trying it once for a week makes sense right after the incident to promote hair cell survival, or if you're having insane inflammation and are dying... but that's it... anything more is just crazy.

 

[__nico__]

Wow. That sounds point for point like me, but only when I stopped the Prednisone. My tones are reactive too and cause sound distortion...

Theory is rebound inflammation / immune response as your body gets used to the higher levels of synthetic cortisol, Prednisone is way stronger than cortisol, and those levels need to change over the day too, plus your adrenal gland might not produce it at the same rate for a long while... so any taper is kind of a joke imo, moreso than benzos even. Why my "previous" doctor cut me off after 3 weeks to 0 made no sense to me saying "no it shouldn't be an issue". Prednisone might help but without the right inflammatory response coming off of it or the right immune reaction, what's the point? You'd have to stay on it which is also very bad.

I think trying it once for a week makes sense right after the incident to promote hair cell survival, or if you're having insane inflammation and are dying... but that's it... anything more is just crazy.

My issues started AT THE END of both courses of Prednisone too... this shit ain't a joke and I want to kill the doctor that ruined my life.

 

[Matchbox]

Well it does sound like some kind of damage to the nerves as opposed to hair cell damage (at least in my case, my otoacoustic emissions are ok, but without an ABR test it's really hard to know for sure).

The good news is that nerves unlike hair cells "caaaaaan" regrow/resynapse/remyelinate over time if allowed to, but it takes forever.

There's also some good candidate drugs coming looking to speed this process up.

For me, I don't know for sure "what" the problem is... And without that info I'm kind of at a loss as to what to do/avoid in the future. Sound certainly didn't make it worse the last few weeks.

My concern is that the "low" lightsaber hum reactive tones (literally what it sounds like in brown noise) are more distinctive of cochlear hydrops... And I did get barotrauma and Prednisone is known to screw with fluid balance, as well as inflammation could too. The smoking gun for this for me is alcohol which makes it unbearably worse for days... Yet salt does very little... It'd likely be secondary hydrops, which are more prone to recovery still.

 

[Matchbox]

My issues started AT THE END of both courses of Prednisone too... this shit ain't a joke and I want to kill the doctor that ruined my life.

Chances are if you had only a short single course over a week and a half... That it isn't permanent... And that you didn't force adrenal atrophy. For me I had issues after the first course, but those began dying down over a couple of months into the start of this mess.

But still you're right, Prednisone is a serious drug. I'd take it again only if I "KNEW" it was autoimmune or if I suddenly was deaf.

For me it was super shitty as when on steroids the 2nd time, life was great, I'd literally hear the tinnitus die a couple hours later, so I thought another course was the right frame of mind to be in... Until the course was over. I started having doubts about it then but wasn't sure as a LOT was going on (including more noise hits).

Then another doctor "assured me" the steroids wasn't the issue and that another course would bring down the inflammation... Guess what happened?!? That's when I finally thought something is very wrong with using the steroids, because it ALWAYS makes it better and ALWAYS leaves worse parting gifts behind.

I've tried Turmeric and coffee for a while instead. I can't say for sure if they help, but they make me feel better and so far when stopping them, they don't magically make life unbearable overnight like stopping steroids did.

 

[__nico__]

@Matchbox, wow these two messages from you literally look like they could be written by me so I'll spare any elaboration. But have you tried a diuretic? I've been thinking maybe I have some form of secondary hydrops as well... a diuretic should surely sort this out at least temporarily?

Chances are if you had only a short single course over a week and a half... That it isn't permanent...

Well, I had two courses like this... less than a month apart too. Both times, on the last day, I would wake up to a 99999% shittier life. That's when I considered maybe the steroids are the problem.

 

[Matchbox]

@Matchbox, wow these two messages from you literally look like they could be written by me so I'll spare any elaboration. But have you tried a diuretic? I've been thinking maybe I have some form of secondary hydrops as well... a diuretic should surely sort this out at least temporarily?

Well, I had two courses like this... less than a month apart too. Both times, on the last day, I would wake up to a 99999% shittier life. That's when I considered maybe the steroids are the problem.

It's hard because there really aren't a lot of good tests, and most aren't really pursued enough if you're on the hairline of "bad but not bad enough to be detected".

Nope. My doctor said it can't be Meniere's so no trialing a diuretic (though didn't deny secondary hydrops, just claimed it's possible but pretty rare).

I did my own low salt /low solute experiment... it might have made things marginally better... but my right ear "rarely" feels full anyways.

Still going to push for it. At the least if it lowers my CSF pressure and this was a fistula after all (barotrauma, HBO is when the real fun kicked in for me, not just low noises but sound effects too), I "should get worse fast" as there will be less CSF to replace the perilymph.

I've had unsteadiness too but to be honest that could be anything including benign (was happening before this as well, where I'd suddenly feel like my car is moving... and it really isn't).

HBO DOES reduce the "tone" tinnitus imo... but in my case it trades it for unmaskable dysacusis. Not a good trade. Even then you need to do it within a week.

I have tried Betahistine and Cyclobenzaprine. Again can't tell if it did anything, maybe I need a higher dose... though from what I've read from others if it's "going to work" you'll know pretty quick.

Clonazepam "used to work amazing" on the distortions, like 90% gone.
Now it just makes me ok with life, maybe cuts them down by 25%? Not worth getting dependent.

 

[__nico__]

I did my own low salt /low solute experiment... it might have made things marginally better... but my right ear "rarely" feels full anyways.

Only dietary change that ever did anything for me in my case was cutting dairy and other known allergens, not placebo because I instantly get a ramping up of all my symptoms upon consuming a certain amount of dairy.

 

[Brian Newman]

I totally understand what you guys are dealing with.

I would be careful with steroids. I took them for my distortions, things were great while on them, quite minimal tinnitus and distortions were there but reduced. The DAY I finished my course I got a low humming sound that night, followed by high frequency hearing loss in the morning (nothing sounded right)...that eventually went away... but then the distortions became FAR worse than what I started with.

Today has been absolutely brutal for me, I just seem to keep getting worse as time progresses.

I did have "a shot" of scotch the night before, but certainly wasn't tipsy but low and behold woke up to low growling nonetheless.

I was trying to do a meeting at work and have this "new" humming (sounds like a sander being pressed firmly into wood while on) reactive tone which decides to randomly and rapidly go on, off, on, off, on, on, on, off, on, off... overlaid on fans/sounds in my head.

The meeting did not go well, I could barely fucking function much less make coherent sentences with it going off at random in my right ear/skull.

How doctors can simply say "have you tried mindfulness" makes me want to stab them in the face.

Yeah, I feel you. At this point I had to try something especially after more trauma to my ears. I took 50 mg of the Prednisone yesterday. It was rough but I got through it, then I started catching a cold so now I'm sick while on Prednisone! My luck right. But I was trying to sleep last night and the beeping and fluttering coming from my right ear transferred to my left ear and my head. It was impossible to sleep at that point. It was horrible.

The only way for me to get relief was by playing music from my iPad and loud wind noises from my phone. If my ears listen to a non constant sound they don't distort sounds as much. But I'm pretty sad right now. I hope the louder distortions aren't permanent, because I slept 30 minutes total last night.

 

[vermillion]

How doctors can simply say "have you tried mindfulness" makes me want to stab them in the face.

You hit that nail on the head.

What's the deal with steroids anyway, aren't they being used for SSHL etc?

 

[Matchbox]

You hit that nail on the head.

What's the deal with steroids anyway, aren't they being used for SSHL etc?

Yeah, and that's all I'd use them for in the future.

They reduce inflammation but what they don't tell you is it also impairs your cells ability to heal, and only encourages some prolific factors (and some apoptotic ones for immune cells especially).

Must've screwed with my immune system because the come off was like I had went to a concert the next morning. Two super loud low droning sounds in both ears and muffled hearing in the high frequencies. Terrifying. I was better before the course.
I'd kill for regular "static or a high ring" only right now so bad.

 

[vermillion]

I'd kill for regular "static or a high ring" only right now so bad.

I hear you!

 

[Backpacker]

maybe I have some form of secondary hydrops as well... a diuretic should surely sort this out at least temporarily?

Dandelion root tea is a very good natural diuretic.

 

[Marin]

I just read about a woman on Facebook who had great success with taking large doses of CoQ10 for her hyperacusis. She said her ENT told her to take 800 mg a day, and she said that she now "hardly has hyperacusis anymore." She also stopped taking the large doses once her hyperacusis got better, and she has sustained her improvements.

I sure wish I had had a knowledgeable ENT to recommend this when my hyperacusis was acute. I think I'll still try it anyway to see if it helps at all. Looking online, it's not unheard of to take such large doses for different conditions.

 

[Aaron91]

I just read about a woman on Facebook who had great success with taking large doses of CoQ10 for her hyperacusis. She said her ENT told her to take 800 mg a day, and she said that she now "hardly has hyperacusis anymore." She also stopped taking the large doses once her hyperacusis got better, and she has sustained her improvements.

I sure wish I had had a knowledgeable ENT to recommend this when my hyperacusis was acute. I think I'll still try it anyway to see if it helps at all. Looking online, it's not unheard of to take such large doses for different conditions.

It's always interesting to hear anecdotal evidence. Please let us know if you take it and how you get on.

 

[Marin]

Please let us know if you take it and how you get on.

Will do. Unfortunately, I am cursed by being very sensitive to supplements so I highly doubt I can get anywhere near her dosage of 800 mg, but I'll give it a shot.

 

[Matchbox]

I tried CoQ10 for a while, couldn't say I used 800mg, but maybe things were a tad better.

 

[Ava Lugo]

I hear you!

Hey vermillion. I got a question for you. Do you have distortions every single day?

 

[vermillion]

Hey vermillion. I got a question for you. Do you have distortions every single day?

24/7 with fluctuations in intensity according to noise exposure.

 

[Aaron91]

Will do. Unfortunately, I am cursed by being very sensitive to supplements so I highly doubt I can get anywhere near her dosage of 800 mg, but I'll give it a shot.

Anyone want to be a guinea pig? I'd offer myself up but I'm already running a Holland and Barrett store over here.

 

[Aaron91]

Will do. Unfortunately, I am cursed by being very sensitive to supplements so I highly doubt I can get anywhere near her dosage of 800 mg, but I'll give it a shot.

Decided to guinea pig myself the last three days. I am happy to say that something has definitely improved after starting CoQ10 (maybe 10%), but it could be a complete coincidence or down to the other supplements that I've been taking for the last month (namely Resveratrol with Curcumin and dark cacao). It's like the edge has been taken off a bit. First day I took 200mg, second day I took 400mg and a couple of hours ago I took 600mg. Tomorrow I'll go 800mg to match the dose from the anecdotal story above. Will report back again in a couple of weeks.

In the meantime, I'll be researching potential mechanisms of action just to get a better idea of what might be going on.

 

[ajc]

I'll be researching potential mechanisms of action

Could it be this groundbreaking finding

 

[FGG]

Decided to guinea pig myself the last three days. I am happy to say that something has definitely improved after starting CoQ10 (maybe 10%), but it could be a complete coincidence or down to the other supplements that I've been taking for the last month (namely Resveratrol with Curcumin and dark cacao). It's like the edge has been taken off a bit. First day I took 200mg, second day I took 400mg and a couple of hours ago I took 600mg. Tomorrow I'll go 800mg to match the dose from the anecdotal story above. Will report back again in a couple of weeks.

In the meantime, I'll be researching potential mechanisms of action just to get a better idea of what might be going on.

I have been thinking about this lately... If you have synaptopathy, could there be a benefit in increasing IHC mitochondrial function? This could possibly make surviving synapses a tad bit more efficient. Might explain why some people see benefit from Nicotinamide Riboside as well (similar reasons) but also why it plateaus.

This is just a theory I have. No evidence to back it up but would be interesting to see what happens when we make our surviving hearing structures a bit more efficient.

I look forward to the update.

 

[Marin]

Decided to guinea pig myself the last three days. I am happy to say that something has definitely improved after starting CoQ10 (maybe 10%), but it could be a complete coincidence or down to the other supplements that I've been taking for the last month (namely Resveratrol with Curcumin and dark cacao). It's like the edge has been taken off a bit. First day I took 200mg, second day I took 400mg and a couple of hours ago I took 600mg. Tomorrow I'll go 800mg to match the dose from the anecdotal story above. Will report back again in a couple of weeks.

In the meantime, I'll be researching potential mechanisms of action just to get a better idea of what might be going on.

Oh wow! I'm happy to hear that you might be seeing some improvement and I look forward to your future updates. Sadly, only 100 mg seemed to irritate my ears (more burning). If you report back that it's really working for you I may try again and just try to get past the irritation in hopes it will calm down.

I also recently had to stop taking NAD after taking it for a couple weeks. Initially I felt obvious improvement but then I started getting a lot more burning. I don't get it!

 

[FGG]

Oh wow! I'm happy to hear that you might be seeing some improvement and I look forward to your future updates. Sadly, only 100 mg seemed to irritate my ears (more burning). If you report back that it's really working for you I may try again and just try to get past the irritation in hopes it will calm down.

I also recently had to stop taking NAD after taking it for a couple weeks. Initially I felt obvious improvement but then I started getting a lot more burning. I don't get it!

Just throwing this out there...

Do you have noxacusis? Both NAD+ and CoQ10 are involved in ATP synthesis and cochlear purine (ATP) receptor sensitization of nerve fibers are involved in the pathogenesis of noxacusis. I might not go this route if I had noxacusis.

Loudness hyperacusis without noxacusis shouldn't have this problem. Or you could have a sensitivity to a binder or other common inactive ingredient in the supplements.

 

[Marin]

Just throwing this out there...

Do you have noxacusis? Both NAD+ and CoQ10 are involved in ATP synthesis and cochlear purine (ATP) receptor sensitization of nerve fibers are involved in the pathogenesis of noxacusis. I might not go this route if I had noxacusis.

Loudness hyperacusis without noxacusis shouldn't have this problem. Or you could have a sensitivity to a binder or other common inactive ingredient in the supplements.

@FGG, I really appreciate your knowledgeable input! That does make sense. I have horrendous noxacusis... burning, stabbing, aching. It's catastrophic.

I can't even tolerate fish oil because that makes my ears burn worse. I thought that was supposed to be good for nerve pain?!

I did recently start Astaxanthin, and knock on wood, I seem to be tolerating that ok so far. If you have any other suggestions for what you might try for noxacusis I'd love to hear it.

 

[FGG]

@FGG, I really appreciate your knowledgeable input! That does make sense. I have horrendous noxacusis... burning, stabbing, aching. It's catastrophic.

I can't even tolerate fish oil because that makes my ears burn worse. I thought that was supposed to be good for nerve pain?!

I did recently start Astaxanthin, and knock on wood, I seem to be tolerating that ok so far. If you have any other suggestions for what you might try for noxacusis I'd love to hear it.

I'm not sure I'm aware of a supplement for true noxacusis, unfortunately. The people that improve seem to do so with time and avoiding excess noise.

 

[Marin]

I'm not sure I'm aware of a supplement for true noxacusis, unfortunately. The people that improve seem to do so with time and avoiding excess noise.

No worries! I couldn't help but ask since you have such extensive knowledge about so many different hearing conditions. Thanks for responding.

 

[Aaron91]

Could it be this groundbreaking finding

Unlikely.

There is no doubt the placebo effect is very real, but the strength of placebo is also somewhat dependent on how much a patient believes something good will happen from it. I've had this condition long enough now to have absolutely zero expectations with any lifestyle, dietary or supplementary protocol attempt and give no thought or active "monitoring" to my symptoms given how non-existent relief is. I also try and change supplements so often that I just see it as a routine more than anything else.

I'm not saying I'm immune to the placebo, I just think it's very unlikely in my own personal case, given my negative outlook on this condition overall.