After Years of Low Sounds and Trying to Recover, Being Active Is Now Ruining Me

[shasta0863]

I don't know what to do anymore, I'm tired. I'm close to checking out. I've lost my progress and my tinnitus is extremely high pitch and piercing. Hyperacusis is bad. Tinnitus reacts to noises like A.C running ect., so it climbs to surpass it.

I've had tinnitus for just about 10 years. Mild until about 4 years ago when another noise trauma made it worse. I struggled from that point on, up and down but I kept myself mainly at home. I felt like I had slowly got better to the point where earlier this year I was at a level I could tolerate. I've lost that now.

Why? Because I got hit my smoke alarm from a MORON who set them off outside working on the systems. I've never recovered. Tinnitus constantly spikes and is erratic in the right ear, never stabalizing and competing with noises all the time. I can't even enjoy being outside and listening to the wind blow and trees because this FUCKING tinnitus reacts to it and spikes up. I then started shortly after, working. Where before I've spent the last few years just recovering at home and staying away from the world (outside in a car, grocery store etc.) Now with work I'm getting a lot more noise, supposedly not ear damaging loud, but quick bursts at times. Someone loud talking close to you, things dropping, cars honking. Everyday noises I'm around at work in small bursts. Yet I'm getting worse. I'm further deteriorating on both my tinnitus and hyperacusis.

I wasn't really living before the smoke alarm went off and I started working and being out more, but I was surviving at least. I struggled but things slowly got better if I remained hidden away. Now, I have no progress anymore. My ears cannot get 1-2 months of silence and rest like I used to. I'm literally dying and getting worse just to try to operate normally outside.

I am extremely fearful that my ears are just so damaged and so screwed up, that these everyday noises, and everyday sudden loud exposures even briefly, are making me reach and unrecoverable state. I did not abuse my ears growing up. I went to one loud music festival at 18, had a temp. threshold shift. Recovered, had mild tinnitus and it got worse from a woodsaw outside my window + my slamming my window shut in rage/panic which has given me a worse tinnitus and hyperacusis for the last 4-5 years. That suggests to me my threshold level and damage in my ear, is extensive enough that perhaps I cannot actually experience noise levels above 80 dB even temporary.

I could tolerate my tinnitus at times, and it felt so much better earlier this year. It's so bad now, I'd wager it's worse than the start of 4 years ago. I have never coped, and I never will. I simply held on and hoped the tinnitus would be more hissing and I could tolerate the tone. I got that finally at the end of last year and beginning of this year. Now it's gone. Now it's high pitch and, it constantly spikes in the right ear up and down, erratic misfiring sounds and is even worse now with competing with other noises like fans etc., in a room.


What the hell am I supposed to do? To make matters worse, I apparently had an ETD issue 2 weeks ago in my right ear which wen't away by itself, but the IDIOTS at the ENT used the tympanometry on my ear which changed my tinnitus and hasn't come back to where it was at over 2 weeks ago.

I don't understand. I'm tired. I don't enjoy anything. I hate everything because the tinnitus is so bad now I can't enjoy what I'm listening to or watching or doing because the tinnitus is cutting through. I'm anger and miserable. I cannot believe I lost a baseline I could accept. For what? Because I have to work and live in this shit world where everyone can abuse other peoples auditory systems with no care and no insight on loud noises. I'm dead inside, and I don't think I can go on. I will never cope to this. I need help so bad, and there is none.

 

[another sean]

I have the same kind of tinnitus. Reacts to just about everything. How do I get thru it? Protection. You have got to protect your hearing if your tinnitus is that reactive. ear plugs and ear muffs at all times when you are away from home unless you are in a quiet room somewhere. If I drove my car without any protection, it would raise my base line permanently for sure.

But with the right ear plugs and ear muffs, I go out daily without a care in the world because it works. Hell, I even go in to the pool at the gym with my ear plugs and mysterious 3M ear muffs. I don't care. Preserving my baseline is top priority and I hope you can do the same. you can still go out. Just protect.

And yes tinnitus gets very loud when you plug your ears up but its just temporary and you have to remember that you do it so it can calm back down when you get home.

Please try this so you have the chance for this spike to pass. They can take months to pass and it sounds like you've still got time but it's all pointless if you don't start protect your hearing now.

 

[shasta0863]

I have the same kind of tinnitus. Reacts to just about everything. How do I get thru it? Protection. You have got to protect your hearing if your tinnitus is that reactive. ear plugs and ear muffs at all times when you are away from home unless you are in a quiet room somewhere. If I drove my car without any protection, it would raise my base line permanently for sure.

But with the right ear plugs and ear muffs, I go out daily without a care in the world because it works. Hell, I even go in to the pool at the gym with my ear plugs and mysterious 3M ear muffs. I don't care. Preserving my baseline is top priority and I hope you can do the same. you can still go out. Just protect.

And yes tinnitus gets very loud when you plug your ears up but its just temporary and you have to remember that you do it so it can calm back down when you get home.

Please try this so you have the chance for this spike to pass. They can take months to pass and it sounds like you've still got time but it's all pointless if you don't start protect your hearing now.

Problem is I can't plug at work. I guess I can try in the car but these db levels in the high 70's shouldn't be damaging us right? I don't even know what this is. I've had this issue before it before, but it never lasted. Now it's like stuck. The Tinnitus just goes up and down and up and down. The faucet, car driving, A.C, these noises in the back make the tinnitus climb up to compete and therefor, go through it.

Some here say this is actually the hyerpacusis that has gotten worse and affecting the T (loudness and even creating this reactive type of T), others say it's just T. I don't know what to think. I cannot go from being ok at a baseline to now this. I'm so fucking angry. People are hurting me and I can't do anything. The idiot who set off the firealarms in my house has caused my T to never go back down. It did at times through the last few months of healing, but with going to work and little bursts here and there, I can't get months of silence and repair like I used to. What the hell am I supposed to do.

I can't live like this anymore. I'm so f-ing angry. I tried for years to wait and get better. Now it's gone. I'm so sick and angry I can't even breathe over this sometimes.

 

[another sean]

I know. this has been my world for the last 3 years and being diligent about protecting my hearing has been the only thing to help me get thru it and not get worse. I can't talk on a telephone. I have to use a relay service for the deaf. It's like you feel confined. I totally get it. I don't know if its hyperacusis or just tinnitus. doctors don't even know. My guess is these sounds don't damage the hear cells but some kind of auditory nerve. What ever it is, you protect either way. Try to change your working circumstances so you can plug up. Or look for another job that's more accommodating to your tinnitus. you don't want to let it get worse and then go insane. then it won't matter what job you have. I know it's a pain to adjust jobs or change jobs but if you dont your not gonna be able to do any job eventually. And if you take care of your hearing like I'm suggesting, the reaction of your tinnitus should lessen like mine has. so you will get closer to where you were before. I know your pissed. I would be too. Every time a plane flies over or a garbage trucks passes by, I just want to throw a rock at it and tell it stfu. But I cant because they will probably throw rocks at me and yelling stfu will spike my tinnitus. so I just gtfo and dont allow myself to be put in those situations again. take that anger and focus on finding a solution on how you can protect yourself and work a job so you stop making things worse and can get back on the road to recovery.

 

[shasta0863]

No progress or recovery like in the past. The flu recently destroyed my ears. No change during flu only right as i got better. Made everything louder and now the reactive/winding up T which earlier in 08 was just low static is worse and reacts more and sharper in pitch. Its also now in my left ear, or was already there very low but inreased to realize it now from flu.

It took years of silence to get somewhere decent and being actice has ruined me. Perhaps for life. I dont know what to do. No cure no help. This is agony and i cant live much longer.

All iprayed for was jusy normal t and stay the same level. Instead i get t increase, reactive to noises spiking up until the source goes away, random misfiring type tone so its never consistent and Hyperacusis. I dont think im going to make it.

 

[shasta0863]

Ear will not recover. Not sure the extent I'm willing to wait anymore.

Moving on with your life is not the answer to those with bad T/H. I spent years in low noise and briefly getting outside noises to finally get T semi-stable and bearable. All lost because of a brief smoke detector at 110db, and then instead of usally going into recovery/quiet mode, I started active work. With noises I was never being hit with. People came in talking loud, hurting my ears. Spiking it. Constant A.C noise aggravating the winding up/reactiveness to the T that the firealarm gave me.

All I did was now spend 6 months with more noise and more bursts of shit that shouldn't be a problem but was for my ears. Fucking ruined myself. This wasn't worth it. Then IDIOTS in this world get me sick while I'm at work making me sick and ruining my ears further.

I can't even get god damn normal T and a normal noise. No, it has to now go up and down and up and down every second even in quiet, then goes up to compete when background noise is presented. This is fucking miserable. The only time I noticed my ear not doing this was when a bunch of loud people were constantly coming into the business and my ear was sore at the end of the day, it somehow alleviated the reactiveness for like half of the next day.

God damn it is this hyperacusis affecting the T, or is this an actual new T I'm stuck with.

 

[Bill Bauer]

Not sure the extent I'm willing to wait anymore.

I hope that one of the treatments below will free you from this nightmare.

Hearing Regeneration Trials

Spoiler

Frequency Therapeutics - FX-322
in Phase 1.5 (Results: December 2018)
Phase 2 (begin 2019)
Audion / Regain Trial
Phase 1/2 ongoing in the UK
Genvec / Novartis - CGF166
Phase 1/2 ongoing

Trials to begin in 2019 / Things to look out for in 2019

Spoiler

Neuromod (MuteButton)
launching their new device in January 2019 starting in Ireland, then Europe, then the US
results of their latest trial: 1H2019
Xenon Pharma - XEN-1101
Phase 2, expected to wrap up in 2nd quarter 2020
Frequency Therapeutics
Phase 2
Otonomy
1H19: OTO-313 (reduce tinnitus) Phase 1/2
1H19: OTO-413 (repairing synaptic damage) Phase 1/2
OTO-6XX (hair cell regeneration)
2H18: candidate selection
2019: Phase 1/2
University of Minnesota (device for tinnitus)
Phase 3 ?
University of Michigan (device for tinnitus)
perhaps updates on their currently ongoing trial
Estimated Primary Completion Date: September 2022
Estimated Study Completion Date: January 2023

 

[OnceUponaTime]

So sorry you are suffering this bad @shasta0863 .
When did the fire alarm accident happened? Do you still have the flu??

I really hope you get better soon. I'll pray for you.
Once

 

[shasta0863]

So sorry you are suffering this bad @shasta0863 .
When did the fire alarm accident happened? Do you still have the flu??

I really hope you get better soon. I'll pray for you.
Once

July. I was probably only exposed for 5-8 seconds. But it was loud, in a small room. My ears are so damaged I suspect (even with no recorded hearing loss, since it's probably hidden hearing loss) that even these brief exposures are either damaging me or creating very long spikes. But 6 months to me is game over, as it's not like before where T might change in loudness or maybe even pitch a bit. This is a full fledge change of the mechanism of it. I had this same winding up and erratic type T a year+, briefly. It wen't away. That was when I had no noise and plenty of constant rest and silence.

I didn't do that this time. I had hoped to god this was just a bad H setback perhaps changing the T. But the sound sensitivity while bad, isn't much different than before. So unless H has subsets that can just affect T, this is looking like a perm. change to the T.

Over the last 6 months having to work, taking phone calls where it might bother my ear with sudden loud voices, people come in talking loud, laughing, things falling, motorcycles going by and ect., has in my eyes contributed to the inability for my ears to fully recover. I do not think getting noise suddenly more often, especially after the smoke alarm, after a couple of years of relative silence was smart. I've potentially killed myself.

The flu is long gone, and it didn't help, but what's weird is during the flu the T wasn't even changed much and didn't seem too reactive/winding up as I describe. Where at base it just up/down/up/down very erratically and then will amp up to compete with noises in the background. After I got better, this all came back and everything seems a notch higher but I can't say for certain. It didn't help anyways, to say at least.

There has to be some freaking variable here, unless it's just straight up damage occurring to the haircell, or neural pathways ect., but I just can't imagine I'm so genetically fucked that those small exposures can do this. The fact I had this T type a year and half ago and it was not as intense and lasted maybe a month makes me wonder what the hell it was. Before I didn't even know what the cause was. Here, I know after the smoke detector about 4-5 days later noticing the erratic T popping up and it was jumping up in sound level when I would have the faucet low, or an A.C in the background at work.

I was hoping to god that this had just affected the Hyperacusis portion of my issue, which influenced the T but 6 months with no change? Working and not resting the ears in pure silence seems to have been the nail in the coffin for me. How can the ears recover if I'm constantly subjecting it to noises that are bothersome periodically during the day.

Two things I've noticed which I don't get:

1) I had my left ear get full and T become more sizzling and loud for a few days. This somehow dropped the intensity of the right ear. Now that left is fine, right is back to being severe.
2) There's been 2 occasions where my right ear felt sore after work from just people laughing near me, talking loud ect., Brief encounters with say 85-95db with an occasional burst to 100 perhaps. The ear would feel sore and I'd feel worn, but the winding up/reactive T I described would be lowered. I cannot say for certain if this was just random or caused by that, but that makes me think Hyperacusis? But if it was bothering my H, then surely the T would be worse if the T change was from H.

I've also re-acquired a weird rumbling/vibration in the right ear which I had years prior that subsidised until only this last 6 months. This came about from ETD issues popping back up in my right ear in November, where ear wen't full and changed my T (and surprised the reactive shit went away wtf) which subsided after a week. But that weird vibration stayed at random intervals, triggered by car drives sometimes, or even rubbing the ear. Became even more after a Typamentry test supposedly safe made the ear worse and these pulsing/vibrations more constant.

It's just been a god damn spiralling of hell. If this winding/reactive T would just stop I could handle this T. But I can't enjoy anything anymore. I stand outside and the f-ing wind and background noises makes the T compete. I can't even sit in a semi-silent room it's so intrusive and non-maskable.

I can't just hide away for another year, which is probably what I need. I've wasted so much money on NAC, alpha lipoic acid, Acecyl-L Carnite and other crap not helping. I have a whole bottle of st. john's wort here too scared to take, and after reading a double blind study of this not even helping with T intensity what's the point. I need something to stop this reactiveness/winding up. But if this is actual T from damage, then it's permanent. That terrifies me, and at 6 months it's now probably a reality.

 

[shasta0863]

I refuse to believe this is damage. I cannot accept that a brief exposure to a smoke detector and then starting work, albeit a bit noisy occasionally, has done this. Especially when I had this same tinnitus tone before a year and half ago (although not as intense and only lasted a month) where it shifted into this high pitch sizzle that flows up in volume, then down all with a split second, over and over constantly barraging you and is then amped up or winds up, at other background noises so it essentially competes with those noises. To me, 5 months of it changed like this seems like permanent damage, but I just can't wrap my head around that.

There has to be another component to this. Could this really be a form of hyperacusis that is the cause, can hyperacusis getting worse even change tinnitus tones, is that possible.

 

[Lane]

There has to be another component to this.

Hi @shasta0863 -- I suspect you're probably correct about that. Have you considered whether you have a Lyme infection, or some kind of misalignment, whether in the TMJ or neck areas? Sinsus infections, altered bite, and other things of this nature can also be contributors. I sincerely hope you can make some progress, whether or not there are any contributing factors. -- All the Best...

 

[Twinkle18]

My advice? Find a tinnitus specialist. That's what I did and do... guess what? I am so much better. How loud is my tinnitus? Loud enough to hear 24/7 and I don't car. Not one iota!

 

[Nonna]

I rmbr your woodsaw story when it happened. It sounds like you need to take a break from your job. Nothing in the world is worth all this.
Ive told 5 ppl outside a few Docs about my ears and wish I hadn't. Not only are they heartless and could care less, 3 of them have actually tested me. If I rmbr correctly you are very young. Are you even passed 24? The brain doesn't stop developing until 25.