Hyperacusis Can Get Better! Gotta Retrain Your Reptile Brain!

Hello hyperacusis people.

Hyperacusis sucks. It can rob you of everything, if you let it. I got reactive tinnitus with hyperacusis and ear pain back in 2017. At first it was terrible, though I got used to it and for a while I managed it ok. But then in 2020/21 a series of loud events occurred which caused my hyperacusis to get so bad that at one point I was wearing earmuffs 20 hours a day and wishing I was deaf. I didn't listen to music or talk to people on the phone for over a year, and basically didn't leave my house except to go the grocery store.

Things just kept getting worse with no end in sight until I found an audiologist who has experience with hyperacusis. I had gone to three audiologists in the past for tinnitus but none of them had any clue about the hyperacusis and so I kinda had given up. I reached a breaking point and thankfully finally searched specifically for hyperacusis and found someone who knows what they are talking about. I'm just barely on my road to recovery but for once things don't seem like they are just going to keep getting worse.

Something that really helped me is understanding what is going on inside the brain. So you have this part of the brain, the "reptilian brain" called the Amygdala. Its job among other things is to watch out for danger. It interprets your sensory input before it goes to your conscious brain and decides if an input is dangerous or safe to ignore. If it is dangerous, your fight or flight response will be triggered BEFORE your conscious brain is aware of the input.

What happens with people with hyperacusis is that the reptilian brain for whatever reason has become trained to think even normal sounds are dangerous. So your brain starts to trigger your fight or flight response to normal sounds. Which causes you to avoid sounds, put on hearing protection, etc. Which just trains your brain that more sounds are bad, in a continual loop until you can't put on any more hearing protection and yet things are still just too loud.

I remember at one point it was pretty much every sound I was analyzing and examining. Wearing hearing protection was normal and the few hours of being "naked" without anything was always an odd experience where everything sounded bizarre and I'd be careful not to make the slightest movement especially like around dishes or anything which could clang or clatter. Plastic cellophane, even crumpling paper, all bad.

Like I said I'm just barely on the road to recovery, but it actually feels like a recovery is possible. The main thing that is important that is easy to do, is listen to white noise, or pink noise, or rain sounds, or something, but you gotta listen to it literally ALL THE TIME. I have rain sounds going every minute I'm awake. You can start out quiet but you need to keep upping the volume. It should be louder than your tinnitus if you have tinnitus. The idea is you are getting used to sound and used to ignoring sound. After a few months of sound therapy, I'm finally able to use the phone and listen to music again, and I've been handling other stuff like clanking plates and other random kitchen noises for a while now too.

Along with sound therapy you gotta combine it with cognitive behavior therapy as well, which you can do yourself at home but honestly it really helps to find someone. Look for people who specialize in chronic injuries and similar type things. My therapist had no prior experience with tinnitus and hyperacusis but they have been immensely helpful in providing tools to help stay level. They also help with encouragement to keep challenging yourself, because you have to slowly keep adding more normal activities back into your life.

Staying level is important because you have to retrain your reptile brain that noise isn't dangerous, so you can't reinforce it. The more you obsess over sounds, the more it burns into your brain that this was something important to remember and activate your limbic system. This activation also plays into the whole "reactive" part of reactive tinnitus. I always used to notice there wasn't a lot of rhyme or reason why some quieter sounds would set off my tinnitus but then other louder sounds wouldn't. Well it turns out the old reptile brain is apparently doing something there too. The more emotionally level and calm I stay after a loud sound, the less my ears react. I still get spikes and stuff but much less so than before, and even the bigger ones are easier to handle, thanks to the tools and techniques my therapist has taught me.

I still wear a lot of hearing protection outside the house but inside the house, pretty much not at all, down from 20 hours a day. I'm working my way down outside too, though I'm going a lot slower there just because there's legit loud 100 dB+ sounds that can happen unexpectedly. But I used to basically refuse to take any hearing protection off even if I went inside someplace unknown, just to make it easier if there was music or who knows what. I'm at least willing to take off the earmuffs now inside places though it's still a work in progress.

My doctor thinks I could go back to doing even loud things like sports events and concerts, as long as I wear hearing protection at those things, but I'm not so sure about taking it to that level! But being able to do a lot more normal every day to day things is pretty great. I went for a bike ride today and the cars weren't too loud, which in the past I really could not stand to be near one.

It's not super cheap but it's not as expensive as I was thinking. The weekly therapy is the biggest expense but I didn't have to buy sound generators or anything. I did get some custom earplugs with changeable filters, with the idea being that you can slowly adjust down the amount of strength of the protection. The musician's earplugs also sound so much more normal so you don't get that muffled sound at least. Overall the audiologist expenses so far has been cheaper than a root canal.

Anyways, what I'm trying to say is, you over there, reading this, wearing the earmuffs all day long and jumping at every sound, thinking about the pros and cons of cutting your auditory nerve, you are only a few months away from a whole different life. I wouldn't have believed it myself if it didn't happen to me.

If you made it this far, thanks for reading and please reach out for some help, you will be amazed at what is possible once you start to retrain your reptile brain!

 

Thank you for sharing your story @sjtinguy. I'm glad to hear you are getting better. I have read a lot of success stories who recovered in a similar way. One thing I would like to stress is to do this slowly and not try to rush the process because that can make things a lot worse. Another thing I saw some people discussing was that at first the pain can come from an actual physical injury and after the injury heals the pain stays as a conditioned response to sound. I think that giving yourself a rest period before trying this method is crucial, although I can't say how long someone has to rest their ear/ears. It's also hard to know whether the pain comes from an injury or a conditioned response. It's also important to note that not everyone reacts the same so this could help a lot of people but also make things worse for others.

I hope you keep getting better and I would love to hear some updates on your progress.

 

Thx for sharing your story.

And yeah I agree with a lot of what you said. I remember when I had mild to moderate noxacusis, I would see kids laughing from far away, and tense up for no reason basically lol. My brain was anticipating the pain of their laughter, even though I wasn't even in pain at that moment.

But yeah my general viewpoint now is that there is the injury to our ears itself, there's the chronic inflammation in the ear, then there's the hypervigilance toward sound itself, which is a reaction of the brain. FYI -- this viewpoint is for NOXACUSIS sufferers only. Not LOUDNESS hyperacusis (we need to seriously start strictly differentiating between the two conditions when we talk about them).

If you can treat all three of those through a combination of silence, anti-inflammatory tactics, and, eventually when your ear is actually ready, sound therapy -- then you may be able to recover.

Most success stories involve some degree of rest, silence, and eventually desensitization. The tricky part is knowing when to desensitize. Also some people may become more sensitized by having too much silence, although I think that may be more reserved for loudness hyperacusis.

It really is a puzzle though. But I think to suggest that this is just a matter of the reptilian brain overreacting is too general. There is a definitely a physical injury to noxacusis sufferers. Possibly the Tensor Tympani muscle + massive inflammation of the middle and inner ear.

But yeah -- they call it central sensitization in the Norena paper. The brain overreacting, that is.

 

I asked my doctor about the pain caused by sound and she said there is a bunch of muscles and tendons in your ear that are all controlled involuntarily. The muscles tightening up and feeling painful is part of the same fight or flight response that also causes other people to feel that noises are too loud. At least that's my understanding. The only way to reduce the pain (without protecting) is to learn to relax more, as relaxing is the only way to allow these muscles to stop tensing up. I think you are right that there is probably some physical inflammation but it's still apparently due to the brain overreacting to normal sounds.

My doctor has made it clear to me that silence, which I used to chase like a drug, is actually an enemy. That has been a hard thing to internalize. But following her advice, I have been steadily improving. When I first started sound therapy it was just barely audible and now months later it's up to like 40-50 dB all the time.

One skill that has really helped me improve is to start to train myself to immediately respond with positive thoughts whenever a loud sound happens. I feel the fight or flight response in my body and immediately replace that thought with the thoughts of safety and comfort, or with a breathing exercise, or anything to stop the sound from imprinting into my brain and being identified as a threat. Doing this I notice it really helps keep the tinnitus spikes down and reduces physical sensations in the ears as well.

 

I agree that the exact regime I'm following might not work for everyone but I would strongly suggest everybody seek out an audiologist who has specific experience with hyperacusis and also consider some kind of therapy. I avoided doctors for years because I had gone to a few audiologists who didn't seem to know what they were talking about, so I just gave up. wish I had found my current doctor sooner, before I fell into the terrible patterns which cost me so much (in terms of money, relationships lost, life enjoyment lost, etc).

 

Everybody has to come to their own truth with this condition. Hyperacusis is homogeneous. It's highly complex, as you've alluded to.

If you have noxacusis and your LDLs are below 30 like mine are, you're in deep shit. It's difficult to desensitize because most sounds aggravate the condition. Of course, aggravation is extremely difficult to gauge. At what point is it aggravated enough to cause a setback or worsening? Can you aggravate it just a little each day but still make progress?

It's much easier to recover if your LDLs are 50 or higher. At least you can sit in a room all day and make slight movements like flipping over a pillow without getting a reaction.

Also, no offense, if your doctor has never had hyperacusis, especially noxacusis, they really don't know much about it. They should be strongly stressing that what they know is anecdotal. I believe that loudness hyperacusis is much easier to treat though, since presumably it's just an overreaction of the nervous system, more easily desensitized.

With noxacusis, many people have sat in silence for a long, long time and have at least made some recovery. Whereas others have used sound therapy/desensitization as you're suggesting, and worsened.

As stated -- it's homogeneous. Everyone has to come to their own truth. Trial and error is probably the most likely outcome for everybody with noxacusis. Then you have the fluke cases -- somehow the brain/body/ear all fall in line, allowing tremendous healing out of nowhere despite trying everything else before.

 

Raising the volume of noise over your existing tinnitus is playing with fire. Especially for someone with hyperacusis.

I also have, or should I say "had," reactive tinnitus. Thankfully it has mostly subsided after gradually desensitizing my ears with low frequency sound enrichment. I had the hyper-vigilance of every little sound as well. Phonophobia is usually common when people develop hyperacusis. It seems to calm down once anxiety is under control.

Glad you are on the right track.

 

Well I'm going to trust my doctor because so far following her advice has basically saved my life.

I'm just sharing my experience and hoping it helps somebody because the difference in my life from a few months ago to today is mindblowing. I'm not here to argue about or defend or have people try to put doubts in my mind about what is working for me. I can see why some people who get better don't come back here.

 

That's all fine and dandy but it is common knowledge that you should not cover your tinnitus completely with sound, it can make it worse and with hyperacusis it's even more dangerous!

It's stupid to put so much faith in one doctor. No matter how excellent you think they are. It could backfire badly.

It's great you're doing better but don't assume others can just follow in your footsteps. Some people have it so bad they have to die to get relief after years of nonstop suffering.

 

Sorry you feel this way, but people who are success stories usually don't come back because they have moved on with their life.

Assuming that they leave, for the reason of people not agreeing with them is highly unlikely.

Best of luck.

 

If what you're doing is working, then keep at it.

But just know there are multiple causes of hyperacusis. The treatment you are undergoing is related to theories surrounding hyperacusis based on the central gain model. The idea is to desensitize the brain to sound and regain normal tolerance levels. This therapy is predominantly useful for people with loudness hyperacusis but only very rarely for people with pain hyperacusis. There are also no studies supporting this therapy, only lots of case studies and anecdotal evidence.

Current research suggests that pain hyperacusis is caused predominantly by auditory nociception of the Type II fibres on the auditory nerve and/or issues with the middle ear muscles. If the majority of the people with these issues follow the treatment regimen you are undergoing, they would face disastrous results. I have read countless stories of people with pain hyperacusis getting far worse from sound therapy and only a couple who got better, and it is highly debatable whether the sound therapy was just a placebo and the individuals who recovered would have healed anyway.

But once again, If the treatment is working for you, then keep doing it. Just know that it's not a definite treatment for all or even most cases of hyperacusis.

 

We are totally receptive to your theory as to how to heal hyperacusis.

But as you alluded to in your original post, you are "barely on the road to recovery".

Many of us have been inspired at times, thinking we know what needs to be done now to recover from hyperacusis, only to have it fail lol. I'm not saying that you're going to fail, by any means.

All I'm saying is -- even if you recovered 100 percent from hyperacusis, the way you recovered may not be the way another person needs to recover. That's how complicated this condition is.

I personally think my noxacusis is 80 percent physical, 20 percent mental. Also I now believe that most people who recover from this condition are able to "listen to their bodies" a lot. In other words, they get really in tune with what their body/mind/ears are telling them to do in regards to their ears. And they get this shit down to a science. Does that make sense?

Like one guy who recovered said "every time my ears started aching, I would go into silence immediately, regardless of what was going on in my day".

Little details like that are what I'm talking about, hence why I said "we all have to come to our own truth".

We're all here to support you and each other, man. It's not meant to be argumentative.

Just know that recovery is a spectrum when it comes to this shit. Maybe most injuries in general. The way an athlete recovers from an ACL tear isn't the same as another one did, even though they both have millions of dollars and a team of people behind them.

 

Sadly this isn’t the case for severe cases. It’s not as simple as telling yourself sound can’t hurt your ears. For some people it works. Others gets severe ear pain that’s an actual ear issue, not a brain issue. Yeah, I mean if it’s just discomfort, I wouldn’t be locked in a room 24/7 and never leave. I would just ignore it and live life. But when you get severe nerve pain from sound and it only worsens the more you set it off, the approach you’re suggesting is why I became so bad in the first place. Following advice that it’s the brain’s fault, not my ears, is incredibly dangerous. Every case is different and I won’t tell every single person to hide in a room because that’s not the case with most people.

Well said. I’m a case of severe pain hyperacusis that tried all that and almost cured my loudness hyperacusis but worsened my pain hyperacusis to catastrophic levels because of this stupid advice to relax, do sound therapy, and not being in silence, silence is the enemy. How wrong I was. My life is gone forever because of this advice.

I don’t mind seeing people improving at all and having different outlooks. It’s cool people recover from most cases of hyperacusis. It also angers me how many new posts I keep seeing of being positive, and doing sound therapy, treating central sensitization, and pretending sound can’t harm you, change your reaction to sound.

What these people have ain’t even close to what some of us have. Sadly they will all say it’s because we don’t want to get better, that we’re too negative. They don’t realize our hyperacusis conditions are opposites. If my pain hyperacusis was altered by positive thinking and sound therapy, I would never be on this forum and would have my life back.

I’m glad more people are learning the differences of these conditions because they really are polar opposites. I’ve suffered from both severely and know the difference is night and day. I advise people who get better to stay off the forums. If a person is able to leave their homes and do mostly normal things, there’s no use reading and worrying about it all day.

Not trying to add negativity to posts like this, just want to reinforce Brody11’s paragraph about all this and that retraining your brain does not fix hearing damage. I’ve had tinnitus and hyperacusis moderately for 8 years, I saw good improvement after my first trauma like most people but never once did anything to change the way my ears felt. I just got to a livable point, where if I stayed off forums, and wasn’t around loud noise, I could live a meaningful life. I kept distracted and busy for half a decade, it was a good decade honestly.

I will say if you’re a moderate case, all that desensitization stuff is worth a try, it’s worth a try in general. But if sound if hurting one’s ears, pushing through it will end in catastrophe like you said Brody11. I’m living proof. I’ve noticed some cases are usually over exaggerated, some people are anxious, overthink it, and it truly is a brain issue.

But I will admit a moderate case being afraid of sound will keep them from ending up like me. Because when you get deep ear pain from turning the pages in a book or deep stabbing through double protection from a squeaking door, you know you’re in trouble.

 

Exactly why I was advising OP about the dangers of completely masking tinnitus with loud sound. I was not trying to argue with what his doctor had recommend him, but this isn't a one-size-fits-all condition as you know.

I've read your story and have my deepest sympathy. I have "winding up tinnitus" that gets louder as the day passes. I did have reactive tinnitus, but I've managed to calm it down tremendously.

I appreciate you spreading awareness of how bad it can get. I believe if I hadn't read stories like yours, I would have ignored my symptoms and probably would have developed noxacusis.

 

It's great you've posted your success story, and I'm really pleased things are working out for you.

We are very short of success stories at the moment!

I have to echo the comments from other posters though. I think you have been incredibly fortunate.

I wholeheartedly agree that for those with loudness hyperacusis and phonophobia that there is a psychological aspect that needs to be treated.

By reacting to loud startling sounds as we do when we have hyperacusis, the 'reptile' part of the brain has caught hold of the fear, and is trying to protect us from what we find fearful.

It's like having a fear of the common spider in the UK (where none actually can harm you). Your brain is wired to see the spider as a threat, and your body will trigger a fight or flight adrenaline driven response almost before you've consciously recognised it - to protect you from what you have recognised as a threat.

The same has now happened with sound, and we have to desensitize our whole system to not fear sound.

The real truth is no-one understands hyperacusis, unfortunately.

Playing noise purposefully louder than tinnitus for hyperacusis, and not emotionally reacting to it, may in theory sound like a great idea to relieve the fear and allow the system to 'go back to normal.

Unfortunately, there are though two side effects to this that can be dangerous for some people:

1. Reactive tinnitus can be made catastrophically worse as a result.

2. If damage to the ear exists, and an onslaught on sound is pursued, it can lead to noxacusis.

A true understanding and real measure of both tinnitus and hyperacusis is urgently needed in our medical community.

If each patient could be assessed and measured, with appropriate protocols to be followed based on severity, just think how many lives could have been saved in the acute stage.

The reality is many people mask their tinnitus especially at night but these tend to be mild stable cases that can do that, but this shouldn't be done with hyperacusis.

I do often wonder whether hypnotherapy can help with the early stages of hyperacusis - it is something perhaps I wished I had tried.

Not for the purpose of stopping a fear of noise and then wander out in to a big city for a night on the town - but if I could have prevented negative emotional triggers towards sound in the early days - whilst allowing sound in slowly - and not freaking out if I thought something too loud, then perhaps my hyperacusis would not have set in as deep as it has.

I have seen a few hyperacusis specialists. Some very well known to tinnitus communities. I found that many were contradictory, they had a theory and tried to fit you to their model - and all have a one-size-fits-all therapy protocol regardless of symptoms, triggers and severity.

One even suggested to continue going to concerts and nightclubs!

Great success story, and wish you well, but I will agree and add for other newbies that may read this that playing sound purposefully louder that tinnitus as a way of hyperacusis treatment can be very dangerous and risky to severe and reactive sufferers.

 

There is no certain right or wrong here @DeanD, and I agree that this has to be nuanced. And many of us know, by now, that both hyperacusis and tinnitus are complex with so many variables coming into play.

However, as far as I can see, @sjtinguy has not posted this as a success story which is the term you are using. He describes this as "barely on the road to recovery", and that he has a long way to go.

 

@MindOverMatter - I must admit I read this a little in haste without noticing it was within the support section and not success stories, some of the wording had me thinking otherwise.

In that case, I hope this ends up becoming a success story for OP - as I said, we certainly could do with some more of those right now.

 

@sjtinguy, you said you have hyperacusis, but never explained what you 'experienced.'

Would you share what you experienced?

 

Thanks for the additional information, Brian. I just want to say I read your post "Warning for People with Noxacusis: For the Love of God, Protect Your Ears!" earlier on when I got hyperacusis, and I think it saved me from getting a whole lot worse. I find your story to be really heartbreaking and hope you still recover significantly if not entirely.

 

Thanks man. Yeah, I try not to be that guy that scares everybody because it can really freak people out when they read about it. I’ve seen a lot of mild people panicking because of my story. I tell most people you will not end up like me unless you are really stupid. That’s a fact, better being safe than sorry. I had nasty reactive tinnitus and distortions in 2021. It’s much better now. It doesn’t spike as much and it’s not as loud. I still hear decently loud tinnitus 24/7 but I’ve gotten pretty used to it. I wish I could be positive and retrain my brain and get results lol. I’m locking myself in a sound proof room for a few years. Hopefully I’ll get a little improvement. I still try to go outside for runs and walks at 2 am and do some light dumbells here and there. Sucks man, lol.

Thanks a lot man. I’m glad I’ve impacted a lot of people. I get tons of people saying that I’ve helped them from getting worse. At least I changed some people’s lives for the better. That’s all that matters, right.

 

If your LDLs are below 30 and you have noxacusis, it's a huge uphill battle. That's where I'm at right now. Luckily I don't have crippling, debilitating pain.

People that suggest to just "expose your ears" are the ones with LDLs of 50 or above, in my opinion. Also they may not have immense damage to the receptors in their inner ear, like some do. I believe only my middle ear receptors/Tensor Tympani muscle are damaged. So my road to recovery is presumably easier than someone with more serious middle/inner ear damage.

People really need to start being more nuanced when discussing this condition. Granted, I'm guilty of this also. I used to discuss it generally. The fact is -- if you don't have a ton of experience with hyperacusis and haven't done a shit ton of research and haven't really gauged the big picture of the condition -- you don't really understand it. Even when you do start to understand it, you begin to realize you don't know shit lol.

I'll repeat this to the end of time -- we all have to come to our own truth about the condition. That simply means that everybody has to find a way to not only manage it very specifically, but also heal from it very specifically.

OP has a point that you do have to desensitize the auditory system at some point, presumably. And also the limbic and reptilian brain play a part in everything, since a lot of our fearful reactions to sound are instinctual, which seems to be beyond the consciousness of the neocortex.

The bottom line is -- giving blanket advice is not wise. Saying "it's just the reptilian brain" may harm people. There's clearly a multilayered component to this injury. The longer you live with it, the more you fail with it, and ultimately heal from it -- it's easier to see that.

 

Hello @sjtinguy, it's really good that you're making little improvements, So pleased for you...

 

I followed up with my audiologist on the noise therapy level with respect to tinnitus levels. The doctor said to make sure the volume level was well above your "threshold of hearing" and I misremembered that as above the "threshold of tinnitus".

The key take away here is to trust your doctor, not some random person on the internet!

 

So why are you on this forum then? Following your logic, we should not trust you (as a random person on the internet).

It is ok if you don't want to argue, but please allow everyone else to share their ideas and have a debate on this forum, it is a healthy practice, but don't take it personally, it is not about you at all.

 

This the same doctor that said it's okay for you to go back to live music, and loud concerts?

 

I'll just address the elephant in the room already. The doctor who is giving you advice has no idea what he/she is talking about. Chances are they don't have tinnitus or hyperacusis, and probably never will.

Sorry bud, but this is the worst advice I've seen yet on Tinnitus Talk. What kind of doctor would recommend this to someone with hyperacusis? And yet you say we have no idea what we are talking about? Pff.

 

Doctors/audiologists/ENTs don't realise their ignorance in this field. This is the reason why they tend to stick to simple narratives when 'treating' tinnitus/hyperacusis patients.

They also refuse to accept information on forums as real. To them, we may as well be a bunch of people making stuff up.

Ironically though, when any medical research is carried out, they ask patients about their symptoms.

 

It's mostly put down to "anxiety," "it's all in your head," "overthinking". They would get a lot more information about the seriousness of this condition if they ever had a quick browse on here.

 

I've had conversations with senior audiologists who look at me with blank face when I describe my symptoms. One response I've noted over time is, "If you're depressed we can help with you that."

I've sometimes had to emphasise the point in black and white by saying to them, "If I put your fingers in a thumb screw and tightened it up, eventually you'd yelp in pain. To alleviate that pain, my advice to sing kumbaya and pop a Xanax would probably enrage you especially because you'd undoubtedly be (quite rightly) screeching for me to just loosen the damn thing."

Unfortunately our situation isn't going to change until we have an objective tinnitus/hyperacusis measurement. These 'professionals' just can't get their heads round something they're unable to see on a chart. Until then, we've only got each other and our various daily strategies to see us through.

 

That is so relatable

Fortunately, a method to detect tinnitus has been developed. The Bionics Institute is working on a different one. Nothing for hyperacusis yet afaik.