Hyperacusis / Reactive Tinnitus / Hearing Distortion

Music distortion is the same it has always been, sometimes hardly there, sometimes loud af. I want to kill myself.

 

The FX-322 paper yesterday paraphrased a paper from Liberman and Dodd, which apparently showed that flattening of tuning curves as a result of OHC damage causes sound distortions. If true, this would suggest that FX-322 is likely to help with these distortions, as it regenerates OHCs and IHCs.

Hang in there. I know you feel doomed, as we all do, but let's remind ourselves that we may be the first generation ever that will be able to have these conditions treated. For anyone who got these conditions 20-30 years ago it was game over.

 

Me too. I'm overweight to begin with, because since I can remember I have had an unhealthy relationship to food. I used to be severely anorexic, then bulemic, then fatty. When tinnitus started I lost 16 kg in 2-3 weeks, now I gained all of that back and some more. I know it's unhealthy and given the current COVID-19 situation it puts me at risk of even dying from the virus, but I'm not sure, I care. But at the same time I think I definitely should try to live more healthily to see that maybe it would make a difference to tinnitus as well. I doubt it, but I should at least try.

 

The exact same thing happened to me, more or less. It was a combination of many things, just a month after I got tinnitus I was also hit by a bad case of food poisoning from some chicken filets. I spent 50% of the time in the bathroom, to put it like that. I lost a lot of water and weight from that. When I got well again I started working out 3-4 times a week for 6 months. I gained muscle and lost a lot of weight. At the same time, I was anxious, depressed and not eating like I used to. Overall I lost something like 25 kilos over 4-5 months.

Now it's been 2 years later and I think I gained most of it back. I'm neither fat or skinny... but my diet mostly consists of carbs. I decided to make a change now, so we'll see if there's any change for the better in a few months.

 

Supposedly exercise and fasting are beneficial to neurological health so I'm trying to do more of both. I just miss spaghetti...

 

God that's so weird. I hate this so much lol.

 

I agree with @Aaron91, I'm really holding out for FX-322. I also feel hopeless in all of this. No answers, no way of knowing if this is the rest of our lives or not. I don't blame you for feeling this way. But maybe we really might just get lucky with FX-322. Hang in there!

 

I'm fairly certain my dysacusis is caused by middle ear issues, not cochlear issues. I'm not impressed much about cochlear research because it's sort of a broken theory to me that doesn't explain why some people get better when hair cells are supposed to be damaged forever.

 

Very much sucks, like today even with Zopiclone last night I had wavering and the beeping outside in the wind

It doesn't seem to show up in silence any longer.

And yet no wavering in the morning yesterday... I had taken a higher dose of the diuretic and more water? (I even risked cheese that day previous).

Really hoping Kava Kava ends up working or a different diuretic... because I'm out of options unless I can prove it's autoimmune.

 

A distortion issue though would imply that the sine waves your brain is receiving have flatlined (see image below), and we know that auditory tuning happens in OHC/IHC neurons in the cochlea, not in the middle ear. The brain/brainstem could of course also play a part in the signal processing, but there is no way distortion happens in the middle ear given its mechanical nature.



Having said all this, it's possible that other symptoms, such as trigeminal neuralgia, could be caused by middle ear issues/TTTS, but there is research to suggest that this could be the result of a negative feedback loop between a cochlea sending pain signals to the brain and the brain, in response to this noxious noise, sending signals to the middle ear which make it go into a state of alert/overdrive.

 

Anything that interferes with hearing can cause phantom cochlea. For some it is as simple as ear wax. For many people, it's hair cells. For others, like possibly yourself, it's middle ear.

 

Except what I'm going through must ostensibly not be a cochlear issue. It doesn't make any sense that it is. When a hair cell is damaged it's supposed to be damaged forever. It doesn't make sense that my sound distortions fluctuate wildly on a day to day basis. This wasn't caused by a standard acoustic trauma or anything, I had a severe barotrauma in 2019 and all of the symptoms i had from a barotrauma conveniently returned now.

Noise exposure does not do a thing to my dysacusis, it fluctuates on its own.
I have wild pressure changes just from the slightest changes in altitude or even head position. My dysacusis is mathematically related to it, it fluctuates with the pressure changes.

I also have vertigo and facial pains and now, physical thumping. Of course research in otology is so shit we don't know if it's the tensor tympani, or the stapes, or the eustachian tubes, or straight up cochlear damage. Who knows. My middle ear myoclonus is becoming more and more debilitating.

Depending on who I visit it's suspected hydrops (since I have vertigo), a fistula or maybe even otosclerosis, again who knows.

There are people WHO GET STRAIGHT UP MYOCLONUS from acoustic traumas and magically improve to their pre "hyperacusis" state from stapedomoty, tetonomy, or like @GregCA where he improved vastly from surgery.

I don't believe dysacusis has anything to do with cochlear hair cell death given this prerequisite. It could also be that my eustachian tubes are messed up, which I have a history of, and sound is reverberating where it shouldn't be reverberating, creating distortions.

As an audio engineer I know this is a surefire way to create nasty distortions in sound. Not to mention I have autophony, and pulsatile tinnitus, which again I've NEVER had before and it fluctuates along with my dysacusis.

A guy named Sim Roesems was CURED of my symptoms through eardrum reinforcement, having Bonain's solution dripped down his ears, an operation to remove cysts from his eustachian tubes, and Lidocaine injections at various trigger points including behind the ears and on the trigeminal nerve.

How does cochlear damage play into this at all? How does the middle ear play into this? We will never know, because compared to the cochlea, the middle ear has the shittiest medical literature in otology. Ruined by jastreboffites who first set the entirety of otology back decades, and now they infest the "hidden hearing loss" crowd too in medical literature.

I'm going to just pull a Michael Leigh and just say, hyperacusis, at least "true hyperacusis" just doesn't exist. It's almost as if the Jastreboff crowd and psychiatrists who are attempting to do otologists' work just lumped in a bunch of real, physical ear problems together, called them "hyperacusis", blamed their patients for it because of dogwhistles like "stress" or "setbacks" or "sensitivity". Whenever we come up with more precise etiologies like "noxacusis", "diplacusis", "reactive tinnitus" etc. we are told by the sound therapist crowd that actively sets out to block research of what we call "hyperacusis" that these etiologies don't actually exist.

 

This is what I'm saying. Something, possibly in the middle ear, the peripheral nervous system, who knows, maybe even the jaw since I've had a lot of shoddy orthodontist work done, is setting off a chain reaction/domino effect that emulates cochlear damage so it doesn't make sense, to me, that what I have is cochlear damage

Again also why I'm not impressed with the "everything is the cochlea" approach. Or "tinnitus is all in the head". Etc

Btw I think those who benefitted from anticonvulsants and K channel openers or just straight up consuming Potassium, likely had middle ear problems. There's even a study (can't find it right now) on the effects of Keppra on MEM.

Today is a weird day because my right ear (the normally way more debilitating ear) is HEARING COMPLETELY NORMALLY. But the left ear is shot now. I know in a few days this will switch. The whole left half of my face feels like cement, as opposed to the right.

Lidocaine injections would be a good trial to see if Botox would be of any use. But it's a matter of finding someone willing to inject it.

 

I think the terms need to be better defined and dysacusis and hyperacusis not assumed to have one cause. This is as much as a researcher issue as a layperson issue.

Anyway, research has shown there is a phenomenon of "central gain" that occurs after hearing damage especially adjacent to the frequencies lost. This often can normalize over time (centrally, you don't regrow synapses or hair cells). You can also get hyperexcitabilty of the NMDA receptors, which definitely adds to tinnitus and probably affects hyperacusis as well.

You can also have dysfunction of the stapedius muscle where it fails to dampen sound and other middle ear dysfunction. It doesn't mean one is right and one is wrong, it just means different people have different etiologies.

I have used this example before but it's like Horner's syndrome. You can have a lesion anywhere from your chest to your eye and get the same symptoms.

I agree that probably the middle ear isn't discussed enough.

 

My doctor prescribed me a diuretic but I was terrified to take it because he said it would make my tinnitus worse. There's some days I can start my morning without sound distortion but it's always back by the afternoon, not sure why that is. I really hope you find something that works for you. I also went on a walk and heard the distortion listening to the melt run off in the gutter and beeping in the wind. It was awful...

 

This is why I am sort of wary of potassium/sodium channel blockers being a cure for noxacusis - I just can't help but see it as a sticking plaster solution that could potentially come with a lot of side effects.

 

That's interesting. I always wondered what the mechanism of action of Keppra was in those cases.

As far as Potassium supplementation, I personally think those are more cochlear. For instance, high Potassium and/or low Sodium affects endolymph constitution (why low Sodium helps hydrops). The cochlear mineralocorticoid receptors also seem influence cochlear inflammation and increasing Potassium will increase Aldosterone activation of them:

Aldosterone and prednisolone control of cochlear function in MRL/MpJ-Faslpr autoimmune mice

Potassium seems to help maintain hearing thresholds too (possibly due to Aldosterone) which wouldn't be middle ear:

Association between a High-Potassium Diet and Hearing Thresholds in the Korean Adult Population

 

Probably a smart move! I tried one and both ears went crazy almost immediately. It was the quickest and most intense reaction to a drug I've ever had. But diuretics do help some people. Probably Meniere's patients, mostly. It went away after a few hours, but it was scary.

 

I don't think of hydrops as a purely cochlear thing. There was a surgeon (can't remember the name, sorry, but I will search for them later) who did tetonomies on people with Meniere's and for a lot of his patients it was essentially a long term cure.

Recruitment is one of those weird things that ENTs can't even agree on what it actually is. We sort of don't know if its a hearing loss or a hearing gain. But I've heard of recruitment being fixed through surgeries too.

Again my dysacusis doesn't seem to be cochlear damage... it can't just be mere coincidence that I also have autophony and that my dysacusis sounds as if my ears were a massive cathedral. Something is echoing and reverberating where it shouldn't.

Is Recruitment a Myth?

 

Hydrops is not purely cochlear. Intracranial pressure can affect it. However, you can alter its severity through changing cochlear fluid dynamics.

I also think for some people their hyperacusis is related to stapedius muscle dysfunction (i.e. losing the dampening effect) and other middle ear dysfunction but for many other people, the hyperacusis is in the frequencies adjacent to the lost thresholds.

Ironically, you are (rightfully) upset that middle ear problems can be dismissed but in doing so you may be dismissing primary cochlear origins of hyperacusis.

To add to this:

I can give you an example of what I think of a clear case of cochlear injury hyperacusis/central gain: I had bilateral antibiotic ototoxic injury with audiogram changes (from severe to profound in certain frequencies). I initially had hyperacusis during this time as well as metallic alien sounds is the best way I can describe it.

The loudness happened on the edge of the frequencies I could hear. Meaning I would hear them excruciatingly loud at above 10,000 Hz but not at 8000 Hz (I can't hear anything over 11,800 Hz).

I wasn't exposed to noise and I had no whiplash. There was no reason for my distortions to be middle ear.

I will also add that mine did not fluctuate at all during that time.

My loudness hyperacusis eventually resolved (I still have distorted hearing though) until I had a loud speaker next to my ear. Ironically, now I think I have TTTS symptoms, including fluttering. Anyway, both produce distortions and hyperacusis but both very differently.

This is why I think we need better terminology.

 

I remembered this video during a shower thought:

What Does Meniere's Sound Like?

A man describes how he hears normally vs during a Meniere's attack. As attacks are intermittent, I think it points to the dysacusis itself (in his case) being caused by hydrops and not by middle ear dysfunction (which he could have) because it is episodic and middle ear dysfunction (to my knowledge) doesn't show up in very short discrete episodes with long periods of normal function (well until end stage in Meniere's, anyway).

Sorry if I'm beating a dead horse or taking over this thread but if dysacusis, noxacusis or hyperacusis all were pathognomonic for a specific etiology it would have been way easier to diagnosis and research.

I think though that is is where patients can come together with detailed description to help figure out the nuance of symptoms and where they might localize too.

 

Yeah I have the same exact thing.

What brought yours on? I originally got tinnitus from shooting my AR-15 4 years ago. I had some spikes here and there but it was not all that bad. I had mild hyperacusis too.

Christmas Day I was deadlifting 455 and as soon as I got home my hyperacusis went from a 4 to a 8 and I developed the dysacusis (sound distortion). The dysacusis really freaked me out because even with tinnitus I loved noise. Now everything sounded like crap.

I went to an audiologist. I have perfect hearing, with 70 dB intolerance to noise. I went to an ENT who put me on Prednisone. It made my beeping in my right ear go to the middle of my head and got louder. No improvement with distortions. Sometimes the distortions would almost go away but would come back as soon as I sneezed or lifted anything heavy.

For a while I thought I had a fistula? It made sense cause I did not have any loud noise exposure. I got a CT scan. The doctor said I’m clear. I went to another ENT. Lmao listen to this, the drive up I was going pretty fast on the highway, like 100 mph. When I got out of my work van, my ears were muffled?

I did another hearing test and after all these positive tests they are now saying I have 40 dB loss at 6 kHz? I’m not convinced. I finally went to a chiropractor who my dad knows, and he did some tests and x-rays.

He said he has had patients with the same problems. If the top two discs are out of place, it can cause worsening of tinnitus and hyperacusis. Maybe sound distortion. I have 3 months of treatment. We will see if this works.

 

Good luck with the chiropractor, and please let us know how it goes! I have severe noise induced hyperacusis and also a severe misalignment in my neck. I tried going to the chiropractor but the car trips were too much for my hyperacusis. If it helps you, maybe I need to find a chiro closer to home.

 

Will do man. And yeah I never had problems with car rides ever until last month. My ears were all muffled afterwards. It worried me. It just makes sense because I only started getting worse when I started powerlifting, and I had no acoustic trauma. I had an adjustment yesterday, tinnitus and dysacusis were the same but my hyperacusis seems a little better.

 

Wow, that’s great! I really hope that it helps you. I was only able to make it to about three adjustments before I had to quit and I didn’t notice any improvement during that time. I’ll be watching for updates. Thanks!

 

Hey there!

I am quite new here but was following some threads especially about the topic dysacusis already.

I got my tinnitus almost five months ago.

Additionally, I noticed a distortion in my left tinnitus ear when it comes to louder noises like running water, kids screaming, dishes etc.

On top, I can hear a ringing during the time I hear those "uncomfortable" noises especially when sneezing or coughing.

Nevertheless, I do have the feeling that my dysacusis got better. The ringing is not as loud as it was in the beginning and for some (only three until now) noises it is meanwhile barely and sometimes completely not noticeable.

Would you see this as a good sign? I am truly desperate because my tinnitus improved over the last months but I am at the same time so scared that I will have to live with it for the rest of my life. Especially the muffled hearing compared with my dysacusis drives me crazy...

 

That video is eerily similar to what I hear ALL THE TIME. Minus the robotic voices, but when I say "wavering" to people, it is 100% this.

 

What anticonvulsants have worked for you?

I have been prescribed some but so far have only take the Amitriptyline.

 

A neuronal tuning loss makes the most sense for us distortion peeps.