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

Hi. I had a period last year where my tinnitus spiraled out of control. I had progressive and constant tinnitus worsening from May 2021 to the end of August 2021. It seemed to have plateaued and slowly stabilized from there on after, although spikes can still sometimes happen. I lost count of how many tones/noise I accumulated during that worsening period, but many have slowly disappeared (still have quite a few). Tinnitus is variable. Familiar tones come and go as they please. The volume varies, currently ranges from moderate (high end) to very severe. Sometimes masking works, most of the time it doesn’t. Adequate masking will depend on how perceptible the reactivity will be for the day. I have the instant kind.

I should point out I also had debilitating loudness hyperacusis, palinacousis, and distortions/dysacusis too. Loudness hyperacusis has improved dramatically, palinacousis seems to be non existent, and distortions come and go (less frequent now or not noticing as much). I was spiking to trivial sounds too during the worsening phase, but not anymore. The reactivity is still a bitch though. Still hoping it eases up at some point.

With all this said, I feel like I’m in a much better place now. Tinnitus gave me the ass whopping of a lifetime, that’s for sure, but I did improved significantly in other concerning areas. I’ll take any victories where I can.

Maybe I’m wired to handle this chaotic mayhem better than others, but give yourself a chance to see how your ears will fare in 2 years. You probably at some point will have to come to terms that your tinnitus is likely not going back to the way it was before. That doesn’t have to mean your life is necessarily over though. Adjustments will have to be made in your life. Be patient and wait for stabilization along with your symptoms improving in some manner to happen. And then let habituation do its thing. Always protect if you’re unsure and avoid disgusting noise.

You’re currently in a category 5 hurricane. Weather it as best as you can and let it run its course.

 

Hi @ZFire, how did you improve? Was it avoiding noise or something else you did?

 

Thank you so much for the reply, I truly appreciate it. I actually had a few really good (relative to how I was doing) days up until this morning where it’s suddenly MUCH worse and louder than ever... again. This is so challenging right now and it helps to hear someone who has made it through a similar situation. I try to find a balance between noise exposure and silence but the noise setbacks are so unforgiving. What kind of balance did you store between exposure and protection?

 

Nothing out of the ordinary really. Stayed home mostly. I avoided loud noise by limiting any outdoor city noise exposure during the daylight. But I ultimately think time was the major factor here with some slow gradual sound therapy (for treating hyperacusis) later on. I should mention I still took a lot of hits from noise throughout this whole thing. There was certainly a non-linear aspect of improvement for me.

If I recalled, one day in October, I just noticed my hyperacusis improved randomly out of nowhere. I was still sensitive, but I was able to initiate some slow gradual sound therapy. It was during the sound therapy where I realized I wasn’t spiking to trivial shit anymore. The improvements in sensitivity and sound tolerance coincided with having less frequent tinnitus spikes. That’s what it seemed like to me.

So yeah about this, I eventually decided at some point to reduce the hearing protection as much as possible in the house. In the kitchen or bathroom, I was wearing protection a lot, but overtime I weaned off it as I was getting better. In terms of sound exposure, I searched for things that were soothing to my ears or wasn’t bothersome to me. It could be soft music, a podcast or my water faucet running at low pressure. I would also balance the exposure with some silence too. If my ears felt fatigued, I would find somewhere quiet in my apartment and rest up. It was a balancing act of sound exposure in the house and taking in some silence. I always protected when I go outdoors, but I wasn’t going out too much anyway. Now I am.

This whole thing is indeed challenging. But don’t give out. If I may boost your morale a bit more here. I live in NYC and my apartment is next to a major hospital. I thought I was a goner and a lost cause due my location, but I still improved despite that. If I can improve under these circumstances, then why can’t you? It’s a long process but I’m sure you’ll get there. Most people do.

 

Lovely to hear about your recovery. A few questions. Was it both ears for you? Do you have any hearing loss? If so, how much? Finally, did you do your own sound therapy or use sound generators?

Thanks.

 

Yes both ears. More so in my left.

No measured hearing loss from my audiograms. Still though, I do feel like I have hearing loss despite my perfect audiograms. Maybe I have hidden hearing loss. I have trouble hearing other things when I’m chewing crunchy foods. Sometimes, I have trouble distinguishing which directions sounds are coming from.

No sound generators. I did it myself.

 

What did you use to do it yourself?

 

I started with a water faucet in my bathroom. Then listening to outside city ambience sounds very late at night by my window (opened), some very soft music, and podcasts. Eventually, I made it my goal to take in as much sounds (mostly comforting ones) as I could in the house. I structured it with time limits and listening durations.

I go a little more depth here if you’re interested.

 

Hello Brian, I'm trying to understand your earmuff situation with your Xbox controller. Is the controller vibrating and the vibration is passing through your body, aggravating your ear? I always wondered if you could turn off controller vibrations in the gaming systems preferences? I'm only familiar with PS2 and on back, I don't know what these newer gaming systems have. I thought for a moment you were talking about the pain of wearing earmuffs over your ears to hear the Xbox game and I was going to recommend bone conducting headphones.

I'm seeing a lot of hope in this thread. My ear right now kinda feels burning but it's also the sound of a TV at times. I'm hoping by getting off the 3+ ototoxic medications will help with healing over time. Since then, I've heard fireworks outside and such while I'm in the house, but my ears are sensitive to glass plates when I try to wash them and they hit the ceramic-looking sink or the plates fall over and clack each other. I'm considering investing in wooden plates and bowls for the time being in the house and getting a quiet toilet seat cover. In due time, I can't fix all this at once, but little by little, I figure progress in eliminating the noises best I can in the house would be good for starters.

I truly appreciate your input on the Ebselen. I really hope that helps so many people with tinnitus. I might look into this myself, but wonder if it's best to wait and see if the tinnitus will go away on its own.

I honestly am at a loss on how to help my ears. I've considered getting a pillow with speakers in them to listen to sounds in my right ear. I can't listen to music far away while trying to sleep anymore when I just used it to only relax me, pre the current tinnitus. So, I'm going to try the bone conducting headphones in the day if I can. But unsure about the pillows, because if you buy the pillow online and it's defective, you can't return it.

Thank you all for this particular thread. I don't know if the burning right ear with tinnitus is permanent or not, but I'm hoping by eliminating the ototoxic medications recently, my right ear has a fighting chance to heal. Take care. <3

 

Yes, the latest Xbox consoles (Series X/S ) and also the PlayStation 5 give you the option to turn off vibrations/rumble/haptic feedback features. Here’s a tutorial on how to disable vibration on the Xbox controller.

You can also disable the vibrations on PS4’s and PS5’s controller too. Pretty straight forward. Go to system settings and look for the accessories tab.

 

There are also pillow speakers that you can insert into an existing pillow, have you considered those?

Oh, and for toilet seat covers, I have these slow-close toilet seat covers that slowly close, so they never bang down when you close them.

 

I'm pretty sure Brian means the actual sounds of the plastic buttons. Obviously you can turn off the vibrations and the sounds of the game.

 

I didn't know speakers for pillows actually existed. I'll try to see if Amazon sells them soon. *O*

As for the toilet seat covers, can you only find those on Amazon too? I had no luck finding anything like that at Walmart.

Thank you for all your help!

 

I wouldn't know a lot about this stuff, being out of loop on what the current game consoles have made accommodations for in terms of customer service. I'm old school, so I didn't know what Xbox controller Brian was using and how it was causing him issues. If it's the buttons, then that would make sense about the earmuffs. Thank you for the clarification.

 

Sure thing @May86 I think you're more likely to find those toilet seat covers at Home Depot.

 

Hey May, yeah, I turn off the vibration. It’s the sound of the buttons. When you have severe hyperacusis, earplugs don’t do a whole lot so sound goes right through. Seems to be an issue for many severe hyperacusis sufferers. The sound of the buttons and sticks does cause pain in my ears.

It takes a lot of somebody with this as bad as I do to admit most people with this will improve. Just be good to your ears and listen to your body. I kept getting worse because I would test the decibel level and say oh, it’s under 70 dB, it can’t make me worse --- even though it was causing pain. Anything you read about all that is crap. Audiologists and doctors like to mash every patient together and say everything is the same for everyone and we all know that’s crap. Some people can do things others can’t. Some things may hurt your ears but not mine and so on. Do not base anything off what other people say and listen to your body instead. That’s the most important thing. Wish I had figured that out earlier. I wouldn’t be this bad. So sit tight and get off the meds and let your ears settle.

Ebselen is the drug I understand the least but it could possibly help, especially if it’s helping with inflammation. Inflammation plays a big role in all of this. Many of us will definitely try it when it comes out.

 

I''ll check them out sometime soon, because I didn't think to check them out. I appreciate your help! *O*

 

Hi Guys, I’m a little confused and pretty freaked out. I went to a big NYE party at a event, lots of people, DJ, the works.

On January 3, I woke up with intense hyperacusis. Everything was uncomfortably loud. I didn’t know what was going on, I started googling and found the term hyperacusis. And I realized, reading the symptoms, I have been experiencing slight hyperacusis for almost two months maybe. I was hearing sound clearer than other people or sounds they didn’t hear at all. I just kind of shrugged about it then. My health isn’t so great so I just tend to wait things out till I see my doctor.

The first few days I didn’t do anything but try and push through and avoid very loud sounds. My ears started to feel full after a while of noise and then my ears would get achy/slight burning feeling. I didn’t use ear protection because I read that that can make it worse.

Then I found this forum. Someone told me to cover my ears and let them rest. I have been doing just that since. I’ve only been without ear protection for more than 3 minutes for two clinic visits and a doctor’s appointment for ear fluid.

I feel I have only gotten worse. I don’t live in a quiet place. I live in an old up stairs apartment above my half dead landlord who has two barking dogs, my three destructive cats, right next to the expressway. Even with 30-32 dB hearing protection I hear all these things.

Sounds are so uncomfortable and can be painful. Even the sound of my hand running on my skin is so freaking loud. I noticed that I’m only comfortable with sounds up to 60 dB with protection.

And today I feel like I hit rock bottom. My partner, who has a low voice, softly said goodbye to me, I had lifted up one side of my earmuffs to hear him and it’s like my ear tensed up in sharp pain. It faded. But it’s still achy and sensitive three hours later. I also noticed today that my own voice above a whisper seems to bother my ears.

Someone on here heard my original story and said I was unlikely to have severe hyperacusis after one acoustic trauma. But like what exactly is a setback? I’ve heard loud noises since this started that made my ear uncomfortable, were they all setbacks?

I noticed that around the time my hearing got sensitive was after I started Lyrica for nerve pain. I had just stopped taking it cold turkey around Christmas. Could that be a factor?

I really don’t understand what’s happening. I have no idea what to do. I have tried to read threads but can’t seem to find anything that sounds like what I’m experiencing. I’m just more scared and feel absolutely hopeful. I also have tinnitus and distortions.

Sorry for the long rant.

 

Hi @Moni97 -- I've been aware of Lyrica being ototoxic for quite some time, so am of the belief that your taking Lyrica could absolutely be a factor.

I hope things get better for you soon!

 

@Brian Newman, yep, same here. I've only had this for a month but I'm getting worse fast. Even with double protection, like you said, sometimes sound cuts right through them. I don't have a quiet room at the moment so I'm planning on moving out for a bit till my condition stabilizes. If I can get to a place where I can live in my current apartment without pain, that'd be great.

The thing is, I can't actually tell what's worsening me, I have pretty delayed pain and I can't seem to figure out if my middle ear is reacting to stuff, causing setbacks, or if it's getting worse with anxiety. I can definitely tell with sharp noises like door creaking and tinfoil that it's cutting through. But my landlord walking around upstairs and cars driving by while I'm in bed with double protection, I can't figure out if it's worsening my symptoms.

 

Hi @haha ear go eeee, I am currently in the same mind state as you. Going through a major setback with my noxacusis starting just this Monday and what I think has caused this was 2 days prior. Now I don’t know what my sound thresholds are at all but I know the running of taps are causing trigeminal nerve pain which never happened before. That seems to be an instant reaction.

If you can move to a quieter place soon, then hopefully the quiet will help your ears and also to figure out what your sound thresholds are too.

Wishing you all the best in your recovery.

 

Yeah, just be careful, do your best to get quiet for a while and let everything rest, then test the waters when you’re ready. It’s too bad ear protection doesn’t block all noise, this would be so much easier.

 

@Brian Newman, I was at my friend's house yesterday for dinner. There were three of us altogether, very quiet background music and normal conversation volume. I did not wear earplugs, although my right ear did whistle every now and then to certain objects clacking or the higher part of my own voice/other voices...

Today my ear is achy and burning. Not excruciating. Just uncomfortable. I've been home alone all day in silence.

So you say 'protect your ears' if you have mild/moderate pain hyperacusis...

I honestly don't know if I should wear earplugs in quiet social settings, because when I talk with earplugs in my right ear whistles over every word.

I guess I'm just asking you for some tips/advice for me not to get worse. I had reactive tinnitus/sound distortions since the end of June (it cleared up about 80%) for three weeks end of July/start of August. Then it came back mid August. I started developing aching and burning in ear after not wearing earplugs in restaurants/public places in September, just trying to accept the sound distortions... ugh so stupid. Wish I could go back in time.

 

These may be setbacks while your hyperacussis is still recovering. As you've probably read on here, it can go two ways. It's usually related to whether you have significant hearing loss or not.

Either these can be setbacks/the pain will stop once recovered from hyperacusis or if the damage is really bad, according to others on here, you may in a spot where you can't recover and you just need to continue protecting even for little things.

If it makes you feel better, the first time I got hyperacusis was 15 years ago with the 2 kHz whistle on louder voices, about 75 dB or so, and, once the pain got better, I was able to live a normal life (with some adapting).

I wore earplugs out to loud places but not mid level to quiet places and didn't really notice the whistle much because of it. When it happened, I just reacted more as if a sound was loud rather than noticing the tone. I was able to do this fine 3+ times a week for 15 years, play 500 gigs etc. Now that I got it back again (during COVID-19 lockdowns, not from sound), I am like you and want to wear protection in even lower level restaurants to 'be safe'. It really depends on if you think you've got that damage or not.

That first recovery for me was about time and retraining my brain not to fear sound as much - it took about 18-24 months. It's harder for me to attempt that this time without fear as I'm older and know I have some hearing loss (despite wearing earplugs every single time I have gone out for 15 years).

If you're young or haven't got significant hearing loss, you definitely have hope. Also, you also shouldn't blame yourself for not wearing hearing protection at fairly normal situations. It's all about adapting now.

That whistle while wearing earplugs is definitely an obstacle. But see my other post to you to try and solve it as best as possible. Subtle earplugs may help in these social situations.

Main thing is that you take it fairly easy with loud places for the first 6 months after the trauma.

 

My advice is to avoid sounds that trigger lingering pain. I’ve dealt with every level of hyperacusis and noxacusis. I’ve never experienced worsening from noises that caused discomfort or pain that only lasted a second. Every worsening I’ve had is from lingering pain. There’s no way to gauge by measuring how loud sound is or comparing to other people because our ears are all so different. For example, I’ve experienced permanent worsening and severe pain from squeaky sounds through double protection. But I’ve punched holes in walls and was fine. My noxacusis is definitely frequency specific. If I get enough of any sound, my ears will hurt really bad and get worse. But there’s some sounds I must avoid at all costs and others I don’t have to completely avoid all the time. I kept getting worse and worse for 2 years because I listened to mild sufferers who said this is all a mental condition, that you should retrain your brain, expose to sound, have some positive thinking. I kept thinking how can TV at volume 1 hurt me? Well it does lol. Only way I gauge now is paying close attention to what’s causing me pain, the pain sensation and how it’s lingering. I’m such a bad case and have to avoid most sound but it literally can’t hurt wearing hearing protection in public.

Anybody who tells you overprotection makes you worse does not have noxacusis and has mild loudness hyperacusis. I’ve read so many stories of people who say they had to toughen up and push through and get used to sound again and silence made them worse. They don’t have noxacusis lol. I absolutely promise. 90 percent of loudness hyperacusis sufferers claim they have noxacusis so of course exposing to sound works because they have a little mild discomfort.

Good and bad news. I believe there is only a handful of people who truly have severe noxacusis and most people will never get to that level. But the people who have it bad will definitely tell you to avoid sound that triggers pain. Since most people will never get severe noxacusis, even if they tried, I definitely will not go around telling every case to act like me, sit in a soundproof room and never leave because that’s only for the worst of the worse. Honestly, I don’t think more sound helps anybody. I think once they heal enough, they keep healing and healing and getting more tolerance without getting setbacks till they get to a point to where living life doesn’t make them worse anymore.

Sorry for the rant. I rarely go on any support groups anymore because of all the toxicity. Seeing all these people who claim they are severe and give out bad advice but don’t even have noxacusis makes me really angry. All the people who say sound exposure and positive thinking makes you better and silence makes you worse, and people like me are too negative. Drives me nuts lol. It’s scary to hear but people need a reality check because this stuff is no joke if it gets bad enough.

Since your pain is more annoying and not severe, I think you’re OK, just be cautious and do your best to protect your ears and you will be fine. Honestly, before I got super bad, I just wore protection whenever I was in public, driving, or around people and I was OK for a while. If you’re around low level sound and you’re not sure, test the waters, if you start noticing the nerve pain, throw some earplugs in. You don’t have to avoid all sound unless it’s causing your pain. It can be hard to tell sometimes if your pain is delayed. The whistling over sound is a type of distortion; I have that too, but it doesn’t correlate with my noxacusis at all, it’s just super annoying. I wouldn’t worry too much about that. Try your best to ignore it. It can be hard though for sure lol. I get beeping over noises and it used to drive me nuts.

 

First of all, I'm so sorry for how severe your condition got. I had no idea this condition existed until July this year. My GP thought I had an ear infection for god's sake! It is such a nightmare scenario that many people on earth will never experience. I hope with silence you are making some slow improvements.

Back to your comment. I do not know for sure yet if I have mild noxacusis or not. I have been experiencing lingering discomfort in ears but it is not obvious what sounds specifically are causing it yet. I do not get instant pain from sounds, they just seem louder to me and cause that horrible whistle in my ear. However, I am going to continue with hearing protection outside my home and start wearing it in the kitchen for now. I live with my partner who is very understanding, considerate and quiet (I am very lucky in this regard).

Yesterday I went to see an audiological scientist. He did a probing test on my ears to see how my ears are functioning and a hearing test/LDL test (hearing is normal but 50-70 dB is my upper tolerance limit). He discovered that my Eustachian tubes are completely dysfunctional but that the general health of my inner/middle ear structures seem good. The Eustachian tubes do not open or close correctly at the right times. I suspect that this has been the case for years and has made me more vulnerable to sound (hence why I think that an accidental full-volume loud blast from my car radio a week before onset of hyperacusis symptoms might have been the straw that broke the camel's back).

Have you ever come across people with cases of hyperacusis with ETD? I have also experienced 2-3 instances of a sore jaw on my worse right ear side. So maybe a problem with my muscles is causing the dysfunction of my tubes. I honestly have no idea though. I have to wait to see Jaw specialist and an ENT surgeon...

Also, have you ever gone to see a neurologist? Or is this pointless?

That's so interesting that you have the whistle/sound distortion as well. Glad to know that you got used to it. I thought I was going insane at the beginning! Honestly never thought anything like that could happen to my ear. I just thought my regular baseline tinnitus could just get louder. Ugh!

Lastly, no need to apologise for the 'rant'. I really appreciate your response, especially since you don't visit the forums as much now.

I wish you continued improvement in pain symptoms, even if slow.

 

I have heard of noxacusis sufferers having Eustachian tube issues. It wasn’t their main issue but it can’t hurt to try and figure that out - maybe it will help. I definitely think you got a good chance of recovery. When I had moderate tinnitus and loudness hyperacusis, I didn’t believe noxacusis existed and could possibly get this bad. I thought all the people telling their stories were wusses. That goes to show most people who have it mild don’t believe how bad it can get. A lot of doctors don’t know about noxacuis and some won’t even admit it exists. My doctors were pretty understanding but what can they do? My neurologist gets me pain meds but there’s nothing else he can do. You don’t need pain drugs so seeing a doctor will probably be a waste of money unless an ENT wants to check out your Eustachian tubes. Pressure buildup can cause ear issues for sure.

 

I saw a neurologist for sound distortions and it was pretty pointless.

I had previously seen an ENT who thought the distortions were neurological and/or caused by silent migraines, but the neurologist disagreed with that theory.

Other than that, she had nothing else to say. It was a complete waste of time.

 

I also have Eustachian tube problems.

It's possible that they accentuate the (pain) hyperacusis by aggravating the contraction of the tensor tympani muscle. They are also linked to the jaw muscles and the tensor palate muscle, which, if contracted too much, can affect the Eustachian tubes.

But the opposite effect can also occur. Sound trauma that causes dysfunction of the tensor tympani muscle then affects the Eustachian tube mechanism.

@Brian Newman, have you tried Rimegepant? As it works by blocking CGRP (migraine-pain) receptors, perhaps it might help. By the way, do you also have tinnitus that reacts to movement/contraction of your jaw and neck muscles?

 

Have you ever tried any treatment for the Eustachian tubes? Have you seen an ENT?

Can anything help with the jaw muscles to stop them affecting the Eustachian tubes? Have you seen any jaw specialist?

My tinnitus does not react to any movements, except maybe when I yawn I sometimes notice it seems louder during the yawn.

Thanks.