Warning for People with Noxacusis: For the Love of God, Protect Your Ears!

I don’t know how severe you are, depends on the level. Everybody’s different so not sure, but a car alarm for a second through earplugs shouldn’t cause any damage. It’s when the exposure is more than a few seconds or the sound gets to about 140 dB that it’s instant damage. Good you had earplugs in. Airbags, fireworks, explosions, popping balloons next to our ears, stuff being directly in our ears is the stuff that can cause quick damage. Of course if you already have pretty damaged ears, the level it takes to do more damage is definitely less. All it takes to mess me up is a door creak through double protection, I wouldn’t say it’s causing damage though, but definitely irritating my bad ear horribly.

Rule of thumb for most people, if your tinnitus isn’t extremely elevated, or you don’t have bad muffled hearing or bad ear pain, it’s usually a spike. But who knows with this stuff. Be safe.

 

Hey, how are you? Any improvements with noxacusis?

I currently have tinnitus and noise hurts my ears. I cannot watch TV or listen to music. Did that happen to you as well?

 

Yeah I’m still doing terrible unfortunately. I haven’t listened to music in over 18 months. Any artificial volume causes me extreme pain. My biggest noise triggers are anything high pitch. Especially squeaks and squeals of any volume. God awful pain.

If you’re saying your ears hurt from noise and you’re not getting deep awful nasty stabbing, or burning, or razor wire feeling, chances are you will probably improve if you’re careful. I don’t want people to be scared from my story because it’s extremely rare to get it at my level. But it is true what I’m going through.

Just rest your ears and don’t screw with them. There’s awful consequences. Do only what your ears can handle.

 

I do get that razor wire feeling. Before it was at the end of the day and now it is from the beginning of the day.

I do not wear earplugs but I have avoided noisy places, TV and music.

Do you have any other suggestions? Does it heal itself only with time?

It all started because I had a ringing on my ear, took a plane for travelling and used earbuds at a high volume. When we reached our destination, the razor wire sensation came for the first time and I panicked of course.

My hearing test came out fine and my ENT said it is all caused by my anxiety.

I know it's a lot of questions but I have been trying to get answers and don't find them. Everybody thinks I am crazy and that it is all on my mind (I wish it were!).

 

My best advice is to find out what’s triggering it and not do it. If it’s true noxacusis, the more you push through it, the more angry it’s going to get. Some people heal with time, some don’t. More people heal though. If you got it from noise, I would be very careful. If you think it’s from the flight pressure, I wouldn’t worry too much. I think you have a good idea, just be careful and lay low for a while and it should get to a better level or go away.

The classic ENT saying it’s anxiety, that means he doesn’t know and he’s not smart enough to know about it. If only anxiety was every problem in life and we could fix our illness by treating it. Anxiety can definitely make this stuff worse but it’s definitely not the cause.

 

I know right after my acoustic trauma, I had a stinging/dull pain in my left ear when noises occurred above 70 dB. I basically wore in earplug in that ear for 2 days straight except at night. It eventually subsided but now I'm wondering how can I go about disabling the airbag in my car based on your story. They are a brutal 178 dB.I guess riding with all four windows open to help prevent noise amplification through its reflection.

Hoping an auto company out there is working on quieter airbags, that's number 1 on my list. Crazy, never thought I'd say that four months ago.

 

Thank you so much for your responses. I am praying for you and for everyone here so we can all be healed.

 

Yeah, one airbag explosion was louder for me and did more damage that shooting an entire clip of .556. Those things are a death trap for people like us. Not sure what level you’re at but if you’re not catastrophic, just be doubled up whenever you’re in a car and you should be somewhat ok. If I was wearing earplugs, this probably wouldn’t have happened. It’s just way too loud man, and one of the few loud noises you can’t prepare for or control or cover your ears for. Over 6 years on Tinnitus Talk, I have never read about somebody getting much worse for airbag deployment. Everybody was lucky. I remember when I was in high school, some guys were removing the airbags and people were blasting them for it. They were the smart ones.

Lol I remember people treating them like they were crazy, over thinking it. I remember all those years I was scared of my airbags going off but they never did. I never got in an accident. Takes one split second and your life’s ruined forever. I mean seriously in the 6 years I had tinnitus and mild hyperacusis, it was extremely easy to manage. Yeah, some things sucked, not being able to shoot without suppressors and double protection, had to shoot alone in the woods, no concerts, no blasting music, clubbing like once a year with earplugs, I mean it was pretty damn easy to manage at a mild level.

I was exposed to fireworks many times, gunshots, tires exploding, all sorts of stuff that should have ruined my ears. But I had the time to plug my ears with my fingers and it made all the difference. Every time I had a chance to protect my ears, or leave a club or bar if it was bothering my ears. Airbags man, hahahahaha. What a stupid invention. Yeah saves some people in severe accidents, but deafen them in the process. I’m glad you’re smart and think about it.

I literally ignored it for 6 years knowing the consequences would be catastrophic but I listened to all mild cases, telling everybody airbags are important, you won’t get in an accident, you will be fine. Hahahah, now I’m stuck in a room the rest of my life because I listened to morons.

Ears are just not something to mess with. Most of us understand that who have it severe. Once you get it bad, there’s no going back unless you’re lucky.

 

I was in a car accident about two months ago. My earplug popped out of my damaged ear on impact but by some act of god the airbags did not release. I'm still counting my blessings for this one, and think of your case every time I reminisce on the crash.

Hope you're doing ok these days man.

 

Ugh man, you lucked out! I’m glad it worked out somewhat ok. At least hopefully your car isn’t ruined. Since Hurricane Ian I’ve been pretty bad, I was exposed to a lot of noise trying to save the last of my possessions. I’m at my parents and it’s way louder here. My ears are hurting like crazy all the time. Drunk every single day, taking lots of CBD, and taking LDN. If I get silence, I get my pain down a bit.

 

Sorry to hear about all that man. I feel you on the drinking, it helps short term... until you're hungover and then everything gets even worse.

I had a question for you: when your pain gets worse, does your tinnitus spike as well? Or do you experience those two things separately?

Hang in there, I hope you get to see some improvements soon.

 

It’s separate which is weird. When my noxacusis got triggered, I didn’t get a spike in tinnitus or anything. When my noxacusis is bad, my tinnitus usually isn’t spiked. Or when my tinnitus is bad, my noxacusis isn’t spiked. Makes me want to think some of this could be middle ear related but I just can’t imagine the middle ear causing this much pain; it feels too deep.

 

Hey, does Hydrocodone/Oxycodone help relieve the pain from your noxacusis? Kind of a catch 22 though since it appears they are both ototoxic, sigh... I loved when my ENT prescribed Tramadol for noxacusis early on after my acoustic trauma, an ototoxic painkiller. The irony.

I actually thought of something more sinister in regards to tinnitus. Your brain is using sound as a torture device so that you feed it its fix for certain drugs after it realizes you're taking them for that specific reason. It's scary to think about that your brain would do something like that. Possibly why some spikes occur after withdrawal.

 

It's the same for me. The general trend since my trauma has been a mellowing out of my tinnitus (or maybe just of my perception of it) but a worsening of my hyperacusis. My pain is delayed, lingering aches, and so far comes with no spiking of my tinnitus at all. Weird stuff.

 

Funny. That's what doctors say when they have no clue about fixing a medical problem... and hyperacusis and tinnitus can't be fixed, so doctors lie and make up a lot of bullshit...

 

Is your tinnitus pretty constant? Or does it react to sound?

 

My tinnitus has been relatively constant lately.

There were a few weeks about 2 or 3 months after onset where it would be reactive in the sense that it would "resonate" on top of certain sounds (laptop fan, refrigerator hum), but that seems to have toned down. It can also "rev up" after certain sustained sound exposures, like if I were to drive without earplugs. I stopped doing that not because of the tinnitus but because of the hyperacusis pain that would follow long drives.

 

This is the most similar experience I’ve found to my own so far. I had mild/moderate tinnitus and some hyperacusis for 7 years, but seemingly one sound exposure two and a half months ago elevated everything and since that numerous minor exposures, which I could have easily tolerated in the past, have further increased my tinnitus and collapsed my sound tolerance. I have been trying to incorporate a bit of sound therapy, but silence is the only thing that seems to let my ears truly relax and settle down a bit. After a buildup of these further minor sound exposures, the tinnitus and hyperacusis are many times worse now than they were after the initial increase two months ago, and at this point it’s worsening very quickly as it takes less and less to get worse. I’m living at my parents’ house as my city apartment is not ideal for this, and I took a leave from work last week. I can’t leave the house now without it worsening, and I spend most of the time in my bedroom doing quiet activities like reading, tying flies, and watching shows on low volume.

As someone starting to go through this, I know you’re genuinely one of the strongest people alive to be having this for as long as you have and you seem to have much worse pain than me. The continuous worsening is just unimaginable. Has the rate slowed down for you at all? Do you find any hope for the future of the condition?

 

There are quite a few promising drugs in the pipeline such as XEN1101, etc.

My hyperacusis was some of the worst in the world. I managed to get out of hell with time and silence and lead a semi-normal life now.

 

How long did you have hyperacusis? When you reference “silence,” does this mean that you did not expose your hearing to any sound whatsoever or did you just protect against loud noise?

 

Sorry to hear man. I hope your ears calm down. I appreciate it by the way. The only way to get my ears to calm down is a perfect amount of sound. I gotta have complete control of all sounds I hear or it just continuously worsens. I think my last chance of recovery was pretty much squashed after this hurricane and all the noise I’ve had to deal with the last month. Just keep laying low and don’t make it worse. I’m a perfect example of a person who got ruined trying to think sound can help noxacusis. It does not. Anybody who tells you it helps them, does not have true noxacusis.

For me I probably don’t have much hope at all unless I get an absolute miracle. In May I was at the point of being homebound but as long as I was careful I was in low pain. Had to avoid most noise but I got back talking and low volume low pitch noise. I’m hoping Frequency Therapeutics and Otonomy come out but I just don’t know anymore. Ebselen seems like it is going to come out, who knows if it would help us. I would put our hopes in Hyperacusis Research, they have researchers actually studying noxacusis. They might find something eventually. I’m preparing for it to be at least 10-20 years, going to have to hold on for a much longer time most likely. Who knows. Anything can happen with this ear stuff. As my house is being redone right now from flood damage, I am making a completely sound proof room. I have a pretty good hunch I will feel much better being in there. I hope I can maintain the ability to talk and tolerate my Xbox controller through earmuffs for a little while longer.

I have to be honest with everyone in a humble type of way, most noxacusis people will never be as bad as me even if they try, and most will improve or get to a livable level. A lot I know are pretty bad but they’re ok in the house and just can’t leave much. I heard from an old gym buddy who’s a helicopter pilot, he never told me he had noxacusis. He was on a helicopter crash and got it moderate for 5 years, woke up one day to it being gone. I’ve read a lot of stories like that too and also a few bad ones. It’s important not to give up hope especially if you’re not at an unlivable level. I hope you see improvement brotha.

 

He locked himself in a sound proof booth and ate rice for 6 months. Only thing that helped him.

 

This shit is insane and no one on the outside could hope to understand it. I’m living it and it still makes zero sense. A loud suitcase zipper this afternoon set my right ear on fire and my tinnitus is going wild. We need a miracle, but until then it’s pure grit. I have a ton of respect for you after hearing your story, not many can relate.

 

If true, that is amazing discipline. I tried the low histamine diet. It did not help me, but I do not have pain with this condition. The hyperacusis is very frustrating and limits my life, and I can only hear the tinnitus in a quiet setting (it is probably at a moderate level and only in one ear).

 

Ouch man. Yeah, zippers give me burning pain too. My worst trigger is high pitch noise like car brakes and squeaky noises. Feels like nerves being shredded. Pretty soon here I’m going to be in a completely sound proof room. I’ve never been in complete silence this entire disease so maybe it will help. Hopefully enough quiet can get me some tolerance back. More sound definitely ain’t the answer. I don’t know how sound could help noxacusis. Makes me chuckle thinking about it.

 

Histamine did not give me lasting effects. I didn’t do it again because of all the muscle I lost. If you’re still not getting noxacusis and your tinnitus is quiet like you said, just enjoy the little things. Having this at all is depressing and awful but remember it can be so much worse, worse than anybody can possibly think. My loudness hyperacusis seemed to improve with gradual gentle noise exposure, while my noxacusis got worse. I forget how bad you said your loudness hyperacusis is but maybe gentle sounds only in your home may be something to try. Seems like in most loudness hyperacusis cases you need initial rest, then slowly work your way up avoiding setbacks. You probably have already tried and don’t see improvement though. Just never do anything that hurts your ears.

 

Sounds exactly like my story. What was your sound exposure?

 

Well my tinnitus very gradually would get worse over the years and certainly spike with loud noise exposure. I was feeling pretty optimistic about things towards the end of the summer. I was going to restaurant patios with earplugs, and generally open to most activities outside of loud restaurants and live music. It seems the spark was a kiss right up close to my right (worse) ear. But I can’t even be sure. I attended a wedding the weekend before (with earplugs) which seemed to slightly spike my tinnitus for some of the next day but then completely settled down.

Since my tinnitus increased, it has been permanently stacking increases from milder and milder noise exposures. When it increased, I would have given anything to go back to my old baseline, now I’m much higher from that initial increase level than the increase was from my old baseline. This is terrifying man. I thought it would be really hard to live with the initial increase level if it never went down, but now it’s so, SO much worse and it’s getting worse faster. I don’t know what caused this exponential trend, but I would have never thought this was possible even in my worst scenarios about tinnitus. Hard to find anyone who has had tinnitus going out of control up for months like this.

 

There was a guy on here (@Geo) around 2015 describing very similar symptoms, but he doesn't post no more...

 

Well that could be taken one of two ways... Let’s hope he’s been distracted and able to get some life back.