Developed Severe Reactive Tinnitus After Yesterday's Acoustic Trauma

Oh god I’m so sorry. Just know I’m in the same boat... I have four main reactive tones. 500, 1500, 2000, and 2700 Hz. They pop up everywhere in all things. Doesn’t really matter what. So I know exactly what you’re going through. Is yours noise induced? I’m trying to keep it together until Frequency Therapeutics and Pipeline Therapeutics release their drugs. That’s the only thing keeping me alive at the moment.

 

@PDodge sorry didn’t see if you mentioned, was your onset noise induced? And was your spike at 6 months also due to noise? Trying to see how closely we match.

 

I think mine is noise induced from over the ear headphones. I'm relatively healthy. I eat well and go gym and try to watch my weight. My sleep is better now. I think I have a problem at 780Hz, 1000hz, 1430Hz and 2800Hz. I have 12kHz ish ringing/static hiss (morphing from a ring to a hiss over the 4 months with T).

I wonder if the reactive thing is H, or have we lost hearing around those points to make them more pronounced. I dunno. I've really being guard my hearing even more but about 1.5 weeks of musical tinnitus. Yesterday it was slightly better, before I did music and after it was a little worse, so I'm going to have break for a few days.

 

I think things will get better for you by the time those drugs come out. If not, perhaps they will cure you. But something tells me you won't need them.

And for the record, are we talking about reactive tinnitus in this thread or sound distortions? Most of what I've been reading in here sound like distortions. Like do the sounds sound like they are coming from in your ear or in your head (reactive tinnitus)? Or are they coming from the source material (water running, cars, speakers, etc...)?

Also, idk how y'all pin-point these frequencies so precisely you hear. I tried to measure my tinnitus tone once and it was a shit-show. At this point, I'm also too afraid to know. I feel like it would just make me monitor the sounds even more and give me even more anxiety.

 

Thank you...but after the screaming I’m really struggling. It’s like my hearing collapsed even further. I dont really foresee this getting better for me on its own, but I’m clawing through every day.

I have both reactive tinnitus and sound distortions. So two of my normal tinnitus tones are now reactive - they are mild/moderate in silence but will immediately spike up and above sound sources. However my 500hz and 2700 sound only appear in an external source, and they can get pretty loud. But that doesn’t account for the numerous other distortions I have - but they are much more mild and bother me less (I still hate them though).

I suspect that several of these tones are hyperacusis because when I hear the corresponding note in music (like at 2000 hz, which is a B6 note) it will screech above the other instruments.

I don’t know...I’ve always been able to tone match my stuff really easily. But I can be extremely OCD about my hearing problems.

 

Yep, Musician. But it was actually a house party that tipped me over the edge. I had T for like 3 months that had gone away but came back after the party.
The spike was not noise induced. It just spiked one day like it usually does (every day is kind of a gamble but the good days have got WAY better, somedays the T is just like onset: very shity) and never went down.

 

I hope it gets better for us all. Music is my life. All my decisions in life were to chase the music producers dream. I'm battling through its the only thing that keeps me sane. Would be devastated if I had to sell my studio and give up.

I use an app call Frequency Generator for Android and you can sweep the frequency range until you find your T freq. It also has the effect of reducing your one of your T tones for about 20 seconds. If you're really fast you could whack a mole them all and get some temporary relief.

I noticed one day that a vocal sounded slightly distorted but then it sounded better yday.

I can't wait for FX-322. I would have it even if it doesn't reduce T. I have a small loss that ENT was not even worried about he said confidently as I'm 37. So if I can increase the audio input level that will help with masking, if it doesn't get rid of the T/H.

 

I'm a musician too. I had to quit my band and music altogether when this H started 4 months ago. It was indeed devastating, but I saw no way around it. We were recording an album. I had to teach all my guitar parts to our singer so he could record them for me, because I just could not be anywhere near the music. I actually had to leave the studio too when they were recording. They still have my guitar, amp and all my pedals. I haven't gone to retrieve them, because I'm afraid that means I am out of the band permanently. I'm only 29.

It's hard to believe music caused this because I always wore earplugs. Both my onsets occurred after getting my teeth cleaned. But I fit the mold. Musician? Fuck you hears some tinnitus! Life doesn't suck enough? Here's some hyperacusis!

 

Oh man that's devastating. H normally gets better with time (im hoping). Would you be looking to pick up the guitar again? When FX322 comes out I'm you will.

I have a moderately size studio loads of out board and a nice room. I need the final piece of gear now more hair cells.

 

I hope so. Music was my passion. I may be too afraid to ever play in a band again though.

 

Hi, @HootOwl. Has your reactive tinnitus improved at all?

 

Sad to say it has not

Sometimes I’m really scared I’ll be left behind while everyone else gets fixed.

 

Sorry to hear that. I am also suffering with reactive tinnitus. Mine is severe and has not improved either. Any consistent noise sets it right off - even low sounds. Goes back down immediately after the external noise ends.

Do you think reactive tinnitus is actually a form of hyperacusis? I have seen some instances where the reactivity seems to reduce over time. Hope this is the case for us.

I’m also worried that future treatments may not work for our condition.

 

Hey, hang in there. I do think it is a form of hyperacusis, where the central gain for some frequencies is higher than others. I actually think reactive tinnitus will be fixed, especially if noise induced. Yours sounds exactly like mine.

I think what I meant was it sometimes feels hopeless for me personally... I don’t know why, I guess after losing my entire life to this thing I’m just scared.

 

I totally understand. Some days, I feel like my life is over.

I agree in regard to it being a form of hyperacusis. I really hope regenerative medicine is helpful for this condition. Best wishes.

 

Hi guys,

Daft question perhaps but anyone managing to 'snatch' any sleep other than through meds?

If so, how?

I feel a fraud, compared with many of you, having mild H.

My TTS also likes to party in the night and during stress.

A

 

How will we get "fixed"?
If we all get fixed I don't see why you won't... reactive tinnitus is still tinnitus.

 

Does this work too? I'm curious. White noise does not work for me, but the "12000hz white noise" works a lot better for me (it's from the same YouTube channel). I would not listen to it for relief as it's quite maddening in itself, but just knowing there is something out there that can momentarily mask my tinnitus helps sometimes.

 

I have tried those.
It will only partially mask it at very high volume, at which the speakers on all my devices seem to be at the edge of ripping themselves apart.

If the volume is any lower, it literally transforms the tinnitus into a cutting torch, as it becomes so glass shatteringly sharp, that I can literally feel it cutting into my brain at the back of my head.

I agree, that the ability to mask seems to be a critical element as far being able to deal with this nightmare.
Without that, it becomes a nasty spiral towards the graveyard.

 

Hi, @HootOwl. Have you engaged in correspondence with any researchers regarding reactive tinnitus?

I’m curious as to what the driving forces are behind our condition. I wonder if any FX-322 trial participants have this form of tinnitus.

 

I get that 'sharp' scratchy tinnitus from artificial audio and also caffeine. My hyperacusis itself is now virtually absent in day-to-day life and my baseline tinnitus is very mild but I STILL have issues when I consume caffeine or expose myself to certain artificial sounds, e.g my laptop speakers. My tinnitus becomes very sharp and piercing and almost painful, it feels like it's sort of scratching my ears and makes them feel kinda raw.

I guess this is a kind of reactive tinnitus intermingled with hyperacusis. Audio from my laptop speakers just sounds so 'harsh' and feels like it's cutting through my ears. Before my setback I used to have zero issues with my speakers. It's weird how I can go about my day and feel basically normal and fine but as soon as I am exposed to this kind of sound it just reminds me how not-fine my ears are. When my setback was at its worst fan noises etc would trigger reactivity but that's gone now so maybe this kind of reactivity will still improve. I really wonder what the root issue is - I wonder if it's due to damage at specific frequencies.

I'm at the 6 month mark now so I guess there's still time to improve. Maybe I should give it another 6 months.

 

I have not. Part of the problem is whether or not to group reactive tinnitus under the loudness hyperacusis umbrella or consider it a subtype of proper tinnitus.

I more lean towards the idea that reactive tinnitus is a form of specific frequency hyperacusis, either due to cochlear inflammation or structure damage.

I’ve mentioned in the past that quite a few of my reactive tones have notches, so there is an objective lack of input - whether that notch is due to inflammation or hair cell/synaptic death remains to be seen. At least in my case. But being able to see these notches lends me to believe that reactive tinnitus, like normal tinnitus, is a result of inhibited cochlear input. It doesn’t really make much sense for it to be anything else.

I’m hoping that because of this it will be alleviated along with normal tinnitus.

 

Thanks for your insight. If it’s inflammation as opposed to hair cell/synaptic damage, I wonder what kind of therapeutic we would need. What do you mean when you say a few of your reactive tones have notches?

 

@Emgee

Just wanted to add that Liberman’s research points towards loudness hyperacusis being caused by damage to specific A1 synaptic nerve fibers.

But even if that’s the not the case there are a limited number of structures that can be damaged.

OHC, IHC, and A1 fibers are being addressed. The EF-MOC fibers are extremely well protected against noise and idiopathic injury. The EF-LOC system is less studied but from what I can find these synapses are also very difficult to damage. A2 fibers are involved with pain hyperacusis (noxacusis) instead so not really relevant.

I know people are worried because these regen med companies aren't specifically testing for loudness hyperacusis, but imo it doesn’t really matter as long as the structure or inflammation is fixed. It has to originate somewhere and current research points to loudness hyperacusis and reactive tinnitus being solved much in the same way as normal tinnitus.

I do think noxacusis folks might have to wait a bit longer, but they’re making huge strides with that condition as well.

 

That just gave me so much hope reading that. I haven’t dug into Liberman’s research, and I was perplexed by the possible driving factors of reactive tinnitus. While FX-322 could certainly provide us with some degree of relief, it looks like OTO-413 is what we really need due to its repair of A1 fibers (according to Liberman’s research). Insightful as always - thank you. I really hope we don’t have to wait too long.

 

Paul Fuchs' lab at Johns Hopkins is making great headway with noxacusis research into the A2 fibers and a researcher, David Martinelli at Connecticut is working on an animal model for pain hyperacusis funded by Hyperacusis Research. I wonder if Liberman is also doing any work on noxacusis?

 

No problem, hang in there. There is real, tangible hope on the horizon.

I probably should have noted that most of Liberman’s hyperacusis research also dovetails with his hidden hearing loss research, so he was showing that one can get massive synaptic loss without hair cell loss.

So I agree definitely that FX-322 could help alleviate hyperacusis symptoms, since most people likely won’t have complete isolatory synaptopathy. But ultimately yeah...we will have to wait another year or so for synaptic repair drugs to rid us of the beast entirely.

Or for anti-inflammation based medicine such as the Hough pill or that compound that Sound Pharmaceuticals is in phase 3 for.

 

Ah! That’s great news!

I think Liberman might have done some preliminary studies on noxacusis some years ago...? Perhaps, I don’t recall. But I don’t think he’s currently focused on it.

 

I'm not sure. I was thinking about emailing him but his email address on his Harvard/Mass Eye & Ear webpage says it's for "investigational inquiries only" so not sure what this means re patient inquiries.

 

Hey, @HootOwl. Has your reactive tinnitus improved at all? I think I might be developing it, too. I'm feeling rather disheartened.