@Brody11 did a pretty good job covering everything to be honest.
So do you have hyperacusis or noxacusis? I've suffered from both severely and for me they were entirely different conditions. My loudness hyperacusis got better with low level sound. I still have it pretty bad but it's a walk in the park compared to my noxacusis. The thing is, when giving people advice, I want to be as honest as possible because it's important. I do not like scaring people because in reality most people will never get severe noxacusis even if they tried. Even most mild-moderate cases don't get severe unless they really screw up. Most people do improve which is good. And like
@Brody11 said, loudness hyperacusis has a way higher success rate. You may just keep improving and it will go away like last time. There's no way to know for sure.
Hyperacusis and noxacusis have nothing to do with age. It's more to do with extremely loud noise damage and genetics. Slowly losing hearing over time usually doesn't cause it. It's usually ear trauma from gunshots, fireworks, acoustic shocks, explosions, or concerts. I have seen come cases of people abusing their ears long term and one day, 20 years later, their ears had enough and boom, they developed hyperacusis or noxacusis and tinnitus.
I have to admit I've been on these forums for a long time now and I've always hated the negative people who say to give up your life to not get worse. It freaks everyone out. It really freaked me out when I first got all this. I am not a pessimist but I will say no career is worth having severe noxacusis. If you're getting deep stabbing, burning, lingering pain, neuralgia, you are tossing around a hand grenade, you are playing with fire an inch away from a fuel tank. There is truly only a handful of people I have encountered even on the internet who have true severe noxacusis. There's a lot of people who think they are severe, but slip up and say something like they can shoot guns, or do an MRI or something that people with severe noxacusis definitely cannot do. All the people I know with severe noxacusis, including myself, cannot work, cannot get groceries, can barely take care of themselves. We spend every single day in bed in pain doing our best to get to the next day. I shower once a month, I cannot cook, I cannot go outside during the day, I cannot watch any movies with any volume, I cannot talk on the phone unless it's only subtitles, I cannot go to restaurants, I cannot go to the beach, I cannot see my friends, I cannot have a relationship with a woman, I had to give up working out entirely, I cannot eat most food because it triggers the pain.
I would take almost any other condition over this. If I was paralyzed in a wheelchair, at least I could be around my loved ones. I know what I'm capable of and I know my limitations. There's very few things that would leave me suffering this badly. My pain never stops, I would rather burn alive in a fire; it hurts that bad. I throw up all the time from the pain. Nothing stops it. If the pain remained the same and didn't get worse from literally a door squeak through double protection, it would be a different story. There's no way to habituate to severe pain if it keeps getting worse. The isolation is definitely the worst part.
Either I sit in a sound proof room or get even worse. I have found nothing to this day that helps me enough or stops the severe pain. My perfect teeth with rot and fall out because I cannot take care of them or even get to a dentist. I cannot go to any doctor's office now. Last time I went with double protection, the pain got so bad I was vomiting for days.
When I had moderate tinnitus and moderate hyperacusis, I remember seeing stories like mine. I thought they were wussies. I thought they were crazy. Sadly they are not. I believe with all my heart nothing could ever mess me up this bad.
All we have is TRT, CBT, and positive thinking. All regenerative drugs failed. And there will be no treatment for noxacusis probably in our lifetime.
I'm sorry to go on a rant here but it's the absolute truth. Nothing is worse than catastrophic noxacusis. You know what comes in second? Severe tinnitus which also terrifies me. My tinnitus is already pretty bad but I know some people on here with horrifying tinnitus. Any wrong medication can give you even worse tinnitus or noxacusis that will be permanent.
So when I say no career is worth getting whatever the hell I have, I mean it and I want to save other people from making the same mistakes I did. I would do anything to sit down with my family one more time and smile. Even if it meant my last day on earth.
I am not a musician but I understand how much it means to you, it's probably your life. But if you get severe noxacusis. you won't have a life at all, I promise you. You didn't say how bad you were so I don't know what you should do. If you're not getting deep lingering horrible pain, I would try to continue but be very cautious. If your ears don't feel right, you need to stop.
This in no way means you're going to end up like me because it could go either way. I've seen many people in your position be ok and others get worse.
Make an informed decision. I hope you get through this.
Hey Brian,
I totally understand your warning and I also agree no career is worth dealing with what you have. I've been saying the same because I can always do something else and am lucky enough to be able to. Your story sounds completely horrible, I've read about your situation before. I am so sorry it got to that! I don't think you're crazy, because I see how it works for me on a smaller scale.
The other side of this though, is that I want kids and honestly I almost think that is riskier for me and harder to control. So even if I drop my career, it would be quite sad to drop the idea of children to avoid the risk that I 'become one of those very limited few who get it severe'. Again, I agree that may be my own demise - but statistically, it shouldn't be...? Imagine not having kids due to reading some bad stories on the internet, that's pretty wild even if it turns out to be a mistake. Again thank you for emphasizing the seriousness - I believe it.
As far as distinguishing hyperacusis and noxacusis, I think I have both, hyperacusis in left ear which is a sudden sensation, noxacusis in right ear which is delayed pain. I would love your opinion. I don't have pain all the time, it can come on for periods, usually it's only "bad" for a few days at a time.
Interestingly I never have both at the same time despite being completely different sensations which I'll describe in more detail later.
Did you have a clear trauma that triggered yours to that next level?
Let me give you some background for me.
Back when I was 20, I had hypeacusis. ENT said it must be TMJ because that's the only way your ears can 'hurt' - haha. Not being fully aware I continued to DJ/work with earplugs. I would often have bouts of it over the next 18 months including pain into my throat. Sometimes hurting from sustained low-level music or a 70 dB car.
I met another young friend who'd had hyperacusis and got over it. They told me they got over it after stopping over-protecting and fearing it. So I said fuck it and stopped wearing earplugs for low-level stuff and stopped being scared of sound. It went away slowly over 8 or so months from there.
I continued to make music and play for 15 years with very little problem other than finding loud people 'too loud' quite often when I didn't have earplugs, no pain though. I didn't realize that wasn't normal, I just thought everyone was being too loud. I always protected in anything above medium restaurant volume which is probably why I was able to manage everything so easily.
Hyperacusis:
That loudness sensitivity was in the left ear, it also squeaks or distorts when someone speaks too loud etc. I got pretty used to it and didn't really notice it since I always had earplugs in loud places.
I am now 35 and towards the end of 2020 I used Debrox due to earwax. It burnt my left ear and I had pain/sensitivity and tinnitus come on the next day. The tinnitus faded after 2 months and the pain mostly went away within a few months. Around this time I went into full panic mode about the tinnitus and almost had a breakdown which was kind of ridiculous looking back.
BUT it changed the way I looked at and feared sound - which is very interesting that I started to be more vigilant when this all come on. I'm now wearing 32 dB earplugs instead of the usual 15-20 dB.
Noxacusis:
About 6 months after that, my right ear started to get an intermittent bass hum. A few months later I started getting pain seemingly from bass or loud shrill sounds. It's usually more of a delayed ache, but say I go somewhere loud with someone yelling without earplugs, I feel NO pain in that ear and it doesn't seem loud, but hours later it starts to burn and can be set off for days.
Does this sound like hyperacusis & noxacusis to you?
Again, thank you for your warning, I will probably point this out to the people around me. As you know, it's hard to convince them it's anything more than psychological.
What is your experience with nerve pain-suppressing medication? Do benzos not work at all either?
FWIW: Someone on here indicated that he suffered more hearing loss as he got older which offset the hyperacusis and made it better. His tinnitus, however, apparently increased.
That is pretty interesting to know, along with Brian's mention that it doesn't have much to do with long-term hearing degradation.
First, I don't think your description of hyperacusis as either being related to sensitization or permanent damage is precisely correct. Most people like to describe hyperacusis as having four types: fear, annoyance, loudness and pain. The two you are talking about are loudness hyperacusis and pain hyperacusis (noxacusis). Researchers are fairly certain that loudness hyperacusis is caused by enhanced central gain, not necessarily by any sensitization or long-term damage. On the other hand, Pain hyperacusis is far less researched, but to my knowledge, most researchers believe it is caused by issues with the middle ear muscles and/or hyperactivity of the type ii neurons in the inner ear. I've read that some people think noxacusis could be related to central sensitization, but I imagine that it's not the underlying cause of the noxacusis, but rather can develop due to the pain and fear these individuals experience from sounds.
Also, people with noxacusis have less success recovering than with loudness hyperacusis, but I don't think anyone believes "you can't get better with time." It's very individualistic. Some people with this damage get better and some don't. Some severe cases improve dramatically, while some minor ones seem to persist.
As to your question about whether 60+ years old are affected by noxacusis and damage to the ear, I think the answer is yes. Noxacusis is very very rare, so the vast majority of people can go their entire lives, even in loud environments, without developing it. Hence, noxacusis is extremely unlikely even in those who are 60+ so you shouldn't expect to observe a larger percentage of elderly people with it even if it is more common among them.
I agree that it does seem like there are far more young people with hyperacusis than older ones, but there could be a couple of reasons for that. First, the number of people on online forums and support groups greatly favour younger demographics so it shouldn't be surprising that there are proportionally fewer 60+ year-olds. Another point is that in the last several decades, the world has become increasingly noisy. For example, how many 60+ year-olds spent their youths listening to loud music through headphones and going to rock concerts? A lot less than today. So it's also possible that young people get noxacusis more because they are exposed to far more noise than ever before. There are lots of other explanations too I'm sure others could think of, but the point is that noxacusis could be related to damage to the middle ear and/or inner ear and be more frequent (or at least appear more frequent) among younger individuals.
Hopefully, this information is useful for you. There aren't any studies to my knowledge that examine the age range of noxacusis, but
here is one you might find useful. It examines 243 individuals with loudness hyperacusis and pain hyperacusis to compare and analyze their symptoms. The mean age is 45, but the oldest individual is 85.
Thanks for the thorough explanation. It does help to know more details. I haven't spent much time digging in on hyperacusis. After spending so much time on tinnitus, I didn't really want to go through the obsession again. So any of this information saves me a lot of time. I will read that study next.
Sucks to know that pain/noxacusis is seemingly harder to recover from. When I had hyperacusis in my 20s, it was accompanied by pain and I did recover after about 18 months.
Which is why I'm asking the questions now after its return. Because even though I've worn earplugs every day since then, I still have accumulated some damage - so my overarching question is does my age and damage change things this time around? As mentioned, I've been safer than everyone I know, so this all seems a bit unfair.
Sure, nobody can answer that for sure, but if anyone has any evidence, please let me know.
To add to the research you mentioned above, for me the hyperacusis in my left ear and seemingly noxacusis in the other ear switches which gives me a distinctly 'central' feel to the disorder as they interchange. As far as I'm aware, they've never existed at the same time and both symptoms are quite different...
But the mixture of symptoms I have at the moment makes me want to stay away from live music some days. Albeit I never get immediate pain from loud places with earplugs or even any obvious threshold shift after events due to the earplugs. If that means anything?