Completely Recovered from My Hyperacusis and Chronic Ear Pain

[Tony Phylactou]

When did you get tinnitus? When I first got tinnitus (before the hyperacusis which was a year later) - my perception of sound changed a bit. Some frequencies were definitely more obvious than others. Since you don't have pain it's hard to say.

The ears go a bit funky for a while when you're first hit with tinnitus or hyperacusis, there's so many different symptoms people experience it's hard to sort of figure it all out.

http://www.dineenwestcottmoore.com.au/specialist-services/acoustic-shock#what-is-as - peep that for some more info on hyperacusis and acoustic shock disorder.

I'd err on the side of caution and get some good quality ear plugs, use them when necessary but don't over protect your hearing and wear them all the time - this can lead to over sensitization in my opinion. I don't think I would have recovered from hyperacusis had I become a complete shut in and always used my plugs when out and about. Gradual exposure to moderately loud noise helped me overcome the hyperacusis for sure.

Will take your advice thanks and hope it works for me too.

 

[Tony Phylactou]

When did you get tinnitus? When I first got tinnitus (before the hyperacusis which was a year later) - my perception of sound changed a bit. Some frequencies were definitely more obvious than others. Since you don't have pain it's hard to say.

The ears go a bit funky for a while when you're first hit with tinnitus or hyperacusis, there's so many different symptoms people experience it's hard to sort of figure it all out.

http://www.dineenwestcottmoore.com.au/specialist-services/acoustic-shock#what-is-as - peep that for some more info on hyperacusis and acoustic shock disorder.

I'd err on the side of caution and get some good quality ear plugs, use them when necessary but don't over protect your hearing and wear them all the time - this can lead to over sensitization in my opinion. I don't think I would have recovered from hyperacusis had I become a complete shut in and always used my plugs when out and about. Gradual exposure to moderately loud noise helped me overcome the hyperacusis for sure.

I try to follow your advice and get used to everyday noises but it is not easy. I mean do you go in a noisy cafe and stay for hours or a few minutes first and increase it everyday?I find it torture to stay too long or will I get used to it in time? Thanks again. You are an inspiration to me. God bless you.

 

[yonkapin]

I try to follow your advice and get used to everyday noises but it is not easy. I mean do you go in a noisy cafe and stay for hours or a few minutes first and increase it everyday?I find it torture to stay too long or will I get used to it in time? Thanks again. You are an inspiration to me. God bless you.

It will take time to adjust. Do things at a comfortable pace and don't rush yourself. Get some custom mold musicians ear plugs and have them on hand in case you need them.

 

[Tom Cnyc]

It will take time to adjust. Do things at a comfortable pace and don't rush yourself. Get some custom mold musicians ear plugs and have them on hand in case you need them.

This. I also recovered from chronic ear pain and H. A lot of what @yonkapin original post mentions I dealt with. Deep ear pain. Issues just being on city streets (I work in Manhattan). Trigeminal involvement where I'd feel it in my face.

These days I have manageable, despite annoying, tinnitus about 2 days a week. The other 5 days or so I'm really fine and really have to look for it.

GET CUSTOM EAR PLUGS AND WEAR THE HELL OUT OF THEM. Your ears need rest and customs will allow you to slowly reduce the filtration. My ears feel fine most of the time and I still wear mine when it gets loud (bars, the train, when my friends are drunk and are likely to scream in my ear accidentally, etc).

I had hyperacusis and I play live music again 2 years later. You can too.

 

[Oredogg]

@yonkapin

Thank you so much for sharing your experience. I truly hope you continue to recover.

I don't usually follow this forum, nor have I posted here, but felt compelled after reading this thread of yours. Reading about recoveries, such as yours, gives me and others suffering with this miserable beast of a condition a glimpse of hope. Personally, I really needed to hear about someone recovering from severe hyperacusis and chronic ear pain via a route that doesn't necessarily involve sound generators. Just common sense, careful, and systematic desensitization.. over time.

I have very severe hyperacusis (LDLs down to 40 dB in higher frequencies), chronic ear pain (mainly burning type deep in ears and radiates to scalp, cheek, forehead, etc.; it's a trigeminal nerve distribution) and sound reactive tinnitus for almost 11 months now. Been to countless Dr appointments and have been properly diagnosed and working with a H&T trainer audiologist since last November. So far, lots of little ups and downs without any lasting improvements. Just when I think I have turned the corner I get nailed with another setback. I could not tolerate regular TRT due to worsening ear pain. I tried customized sound generator frequencies (cutting off high end) and had to stop that also due to ear pain. My audiologist has nothing more to offer for the pain issue, which ironically is my worst symptom, and the one keeping me from desensitization. It's frustrating how little most audiologists know about hyperacusis with pain, seeing that it's so common in this condition. Although extremely brutal at times, I am forcing myself to keep going to work to keep a roof over our heads, as long as I can. The only way I can manage this is by wearing my musician etymotics plugs or foam earplugs when needed, multiple times a day, and trying to limit them in situations where I have more control of environment (Home, in car, etc). I haven't given up on sound therapy entirely as I am attempting to wean myself back to listening to music, very very slowly and gently, after some kind advice from a fellow sufferer. I have had marginal help from several pharmaceuticals, some for pain and some for sleep aid. Corticosteroids have seemed to help in past and I may try that route again during these flare ups.

Reading your story gives me hope that, given more time, my ears might just calm down without formal sound generator treatment, like yours have. I am going through a nasty and, quite honestly, demoralizing setback at the moment (after several months without pain). It sounds like you've been through similar. At 11 months into this without much improvement, it's hard not to start wondering if this will ever abate. I've dealt with a number of challenging pain issues in my life, but nothing even comes close to hyperacusis ear pain. Any advice on how you were able to cope with this and see your way through it is appreciated.

All the best,
Oredogg

 

[yonkapin]

@yonkapin

Thank you so much for sharing your experience. I truly hope you continue to recover.

I don't usually follow this forum, nor have I posted here, but felt compelled after reading this thread of yours. Reading about recoveries, such as yours, gives me and others suffering with this miserable beast of a condition a glimpse of hope. Personally, I really needed to hear about someone recovering from severe hyperacusis and chronic ear pain via a route that doesn't necessarily involve sound generators. Just common sense, careful, and systematic desensitization.. over time.

I have very severe hyperacusis (LDLs down to 40 dB in higher frequencies), chronic ear pain (mainly burning type deep in ears and radiates to scalp, cheek, forehead, etc.; it's a trigeminal nerve distribution) and sound reactive tinnitus for almost 11 months now. Been to countless Dr appointments and have been properly diagnosed and working with a H&T trainer audiologist since last November. So far, lots of little ups and downs without any lasting improvements. Just when I think I have turned the corner I get nailed with another setback. I could not tolerate regular TRT due to worsening ear pain. I tried customized sound generator frequencies (cutting off high end) and had to stop that also due to ear pain. My audiologist has nothing more to offer for the pain issue, which ironically is my worst symptom, and the one keeping me from desensitization. It's frustrating how little most audiologists know about hyperacusis with pain, seeing that it's so common in this condition. Although extremely brutal at times, I am forcing myself to keep going to work to keep a roof over our heads, as long as I can. The only way I can manage this is by wearing my musician etymotics plugs or foam earplugs when needed, multiple times a day, and trying to limit them in situations where I have more control of environment (Home, in car, etc). I haven't given up on sound therapy entirely as I am attempting to wean myself back to listening to music, very very slowly and gently, after some kind advice from a fellow sufferer. I have had marginal help from several pharmaceuticals, some for pain and some for sleep aid. Corticosteroids have seemed to help in past and I may try that route again during these flare ups.

Reading your story gives me hope that, given more time, my ears might just calm down without formal sound generator treatment, like yours have. I am going through a nasty and, quite honestly, demoralizing setback at the moment (after several months without pain). It sounds like you've been through similar. At 11 months into this without much improvement, it's hard not to start wondering if this will ever abate. I've dealt with a number of challenging pain issues in my life, but nothing even comes close to hyperacusis ear pain. Any advice on how you were able to cope with this and see your way through it is appreciated.

All the best,
Oredogg

Thank you for the kind words!

Your experience sounds very much like what I had to go through. It took me a long time, and at times I felt that I was doomed to suffer forever but it did go away! You'll also recover, just keep a positive mindset, and as you mentioned: just use common sense and systematic desensitization. There will be ups and downs but you'll get through it.

Good luck!

 

[HighleyTall]

More people should post their long term experiences with T and H. These posts can be life savers.
thnak you!

 

[Juan]

I don't post here anywhere as much as I used to, but just wanted to give an update on my situation and say that my hyperacusis is completely gone.

Got tinnitus in 2012, and then made it worse (through barotrauma) mid way through 2013 and gave myself hyperacusis and chronic ear pain, also had other symptoms such as hearing distortion and tonic tensor tympani syndrome.

Pain was mostly in my left ear and was basically there all the time and would be made a lot worse with any exposure to loud noise. Had to give up a lot of things and life was super difficult, especially for the first 12 months. I remember the pain being so bad that the whole left side of my face would hurt, especially along the jaw line and behind the ear. Would also experience some insane tinnitus spikes in my left ear. Also remember having a bunch of other symptoms, very similar to what I used to read about on here and other forums like hyperacusis chat (that place is grim) but they seemed to go away pretty quick.

Basically my symptoms just started to get better over time. I'd say all my symptoms were quite severe from mid 2013 through to most of 2014. Towards the end of 2014 I noticed slight improvements but it was basically a roller coaster. I'd have good days, then bad days - or I'd be on a good streak and then expose myself to loud noise somehow and the pain would come back with a vengeance.

Things really started to improve in 2015 and by the time it was June most of my symptoms had calmed down, didn't want to get too excited during any of this though because I was so used to expecting the pain to come back at some point.

Anyway, fast forward to now and I've been pain free for months and my sound sensitivity is basically back to normal. I'm back to doing a lot of things I was avoiding before and even getting exposed to loud noises intermittently doesn't seem to trigger any pain in my left ear anymore. It's a huge relief because I basically reserved myself to expecting the hyperacusis was something I was going to have to just live with for the rest of my life.

I still have crazy tinnitus, and tonic tympani syndrome (certain frequencies make my ears twitch and spasm, but it's not as bad as it used to be though) and that sucks but it's made a huge difference not having to worry about the constant pain or worried about some sound exposure setting me back weeks.

I'm still careful with my hearing though and will always be. I wear custom ear plugs when I need to and I'm sensible about what I expose my ears, but I'm very much of the belief that you shouldn't over protect your hearing.

Hopefully my situation continues to improve but I just wanted to give some of you this update because I know how much hyperacusis can affect you and how much it is truly a miserable experience that most other people will never understand. My friends and family were pretty good but it was hard for them to understand why it was so difficult for me to do "normal" things.

So yeah, while it might seem like the end of the world right now - stay positive, be sensible with your hearing and just try to lead a generally healthy lifetime and hopefully things will improve sooner rather than later!

What do you think caused your hyperacusis? Was it barotrauma?

 

[Contrast]

I am very happy your condition completely healed, but I feel like it is less common for painful hyperacusis to go away completely then it is for it to be chronic.

 

[Tony Phylactou]

I don't post here anywhere as much as I used to, but just wanted to give an update on my situation and say that my hyperacusis is completely gone.

Got tinnitus in 2012, and then made it worse (through barotrauma) mid way through 2013 and gave myself hyperacusis and chronic ear pain, also had other symptoms such as hearing distortion and tonic tensor tympani syndrome.

Pain was mostly in my left ear and was basically there all the time and would be made a lot worse with any exposure to loud noise. Had to give up a lot of things and life was super difficult, especially for the first 12 months. I remember the pain being so bad that the whole left side of my face would hurt, especially along the jaw line and behind the ear. Would also experience some insane tinnitus spikes in my left ear. Also remember having a bunch of other symptoms, very similar to what I used to read about on here and other forums like hyperacusis chat (that place is grim) but they seemed to go away pretty quick.

Basically my symptoms just started to get better over time. I'd say all my symptoms were quite severe from mid 2013 through to most of 2014. Towards the end of 2014 I noticed slight improvements but it was basically a roller coaster. I'd have good days, then bad days - or I'd be on a good streak and then expose myself to loud noise somehow and the pain would come back with a vengeance.

Things really started to improve in 2015 and by the time it was June most of my symptoms had calmed down, didn't want to get too excited during any of this though because I was so used to expecting the pain to come back at some point.

Anyway, fast forward to now and I've been pain free for months and my sound sensitivity is basically back to normal. I'm back to doing a lot of things I was avoiding before and even getting exposed to loud noises intermittently doesn't seem to trigger any pain in my left ear anymore. It's a huge relief because I basically reserved myself to expecting the hyperacusis was something I was going to have to just live with for the rest of my life.

I still have crazy tinnitus, and tonic tympani syndrome (certain frequencies make my ears twitch and spasm, but it's not as bad as it used to be though) and that sucks but it's made a huge difference not having to worry about the constant pain or worried about some sound exposure setting me back weeks.

I'm still careful with my hearing though and will always be. I wear custom ear plugs when I need to and I'm sensible about what I expose my ears, but I'm very much of the belief that you shouldn't over protect your hearing.

Hopefully my situation continues to improve but I just wanted to give some of you this update because I know how much hyperacusis can affect you and how much it is truly a miserable experience that most other people will never understand. My friends and family were pretty good but it was hard for them to understand why it was so difficult for me to do "normal" things.

So yeah, while it might seem like the end of the world right now - stay positive, be sensible with your hearing and just try to lead a generally healthy lifetime and hopefully things will improve sooner rather than later!

I don't post here anywhere as much as I used to, but just wanted to give an update on my situation and say that my hyperacusis is completely gone.

Got tinnitus in 2012, and then made it worse (through barotrauma) mid way through 2013 and gave myself hyperacusis and chronic ear pain, also had other symptoms such as hearing distortion and tonic tensor tympani syndrome.

Pain was mostly in my left ear and was basically there all the time and would be made a lot worse with any exposure to loud noise. Had to give up a lot of things and life was super difficult, especially for the first 12 months. I remember the pain being so bad that the whole left side of my face would hurt, especially along the jaw line and behind the ear. Would also experience some insane tinnitus spikes in my left ear. Also remember having a bunch of other symptoms, very similar to what I used to read about on here and other forums like hyperacusis chat (that place is grim) but they seemed to go away pretty quick.

Basically my symptoms just started to get better over time. I'd say all my symptoms were quite severe from mid 2013 through to most of 2014. Towards the end of 2014 I noticed slight improvements but it was basically a roller coaster. I'd have good days, then bad days - or I'd be on a good streak and then expose myself to loud noise somehow and the pain would come back with a vengeance.

Things really started to improve in 2015 and by the time it was June most of my symptoms had calmed down, didn't want to get too excited during any of this though because I was so used to expecting the pain to come back at some point.

Anyway, fast forward to now and I've been pain free for months and my sound sensitivity is basically back to normal. I'm back to doing a lot of things I was avoiding before and even getting exposed to loud noises intermittently doesn't seem to trigger any pain in my left ear anymore. It's a huge relief because I basically reserved myself to expecting the hyperacusis was something I was going to have to just live with for the rest of my life.

I still have crazy tinnitus, and tonic tympani syndrome (certain frequencies make my ears twitch and spasm, but it's not as bad as it used to be though) and that sucks but it's made a huge difference not having to worry about the constant pain or worried about some sound exposure setting me back weeks.

I'm still careful with my hearing though and will always be. I wear custom ear plugs when I need to and I'm sensible about what I expose my ears, but I'm very much of the belief that you shouldn't over protect your hearing.

Hopefully my situation continues to improve but I just wanted to give some of you this update because I know how much hyperacusis can affect you and how much it is truly a miserable experience that most other people will never understand. My friends and family were pretty good but it was hard for them to understand why it was so difficult for me to do "normal" things.

So yeah, while it might seem like the end of the world right now - stay positive, be sensible with your hearing and just try to lead a generally healthy lifetime and hopefully things will improve sooner rather than later!

I envy you, but also happy for you. I wish mine would go.

 

[Adil Bari]

Hey love reading about your recovery <3

My hyperacusis started in July and spiked again in August. How long should I wait to start going out in the world and exposing myself to get use to outside sounds again. 6 months? or is it better to start now.

Thanks just curious on your opinion.

 

[Digital Doc]

Depends what you mean by outside sounds. I believe to permanently avoid >80 db exposures without hearing protection. Dont want this whole cycle to start again when you are finally improving.

That being said, I have been able to walk alongside a moderately busy road with random trucks without spiking more than once now. I just cover my ears if it gets too loud.

 

[all to gain]

Depends what you mean by outside sounds. I believe to permanently avoid >80 db exposures without hearing protection. Dont want this whole cycle to start again when you are finally improving.

That must be so hard to achieve unless you go everywhere with hearing protection. Noises can come out of nowhere.

 

[Digital Doc]

@all to gain I really dont wear much hearing protection out. There is just one road I walk along that has trucks at a higher speed.

I dont protect in the parking lot or store. Once I had a big rig blow their air horn and spiked for 2 wks, but it went back to baseline.

 

[GregCA]

@PeteJ - the OP seems to have some symptoms in common with you.

 

[Marc22]

It is nice to know that a small minority of people with hyperacusis can fully recover like yonkapin has. But that is rare. So any of you that are new to hyperacusis, you can improve but you will probably never recover fully. I have had it for 24 years and expect to die this way.

There was a young woman named Anne1994 who posted at that time, who was very new to hyperacusis. She asked whether she could go back to nightclubs. I did not read every post in the thread, and I do not expect she will read this, but for her or anyone: DO NOT GO TO NIGHTCLUBS, LIKE EVER!! (unless you are the very rare person who fully recovered.


Marco

 

[Juan]

That must be so hard to achieve unless you go everywhere with hearing protection. Noises can come out of nowhere.

So true. That's why hearing protection is needed.

 

[PeteJ]

It will take time to adjust. Do things at a comfortable pace and don't rush yourself. Get some custom mold musicians ear plugs and have them on hand in case you need them.

When do you use them?

Do you consider your tinnitus severe and loud?

Your left ear pain problem sounds similar to mine. I don't understand how it's hyperacusis if it's just one ear mostly. My ear pain hasn't been as severe recently but just tonight, it got really painful. It ruined my night and I already have severe loud high pitched tinnitus of several tones.

The ear pain makes everything worse.

I was hoping the ear pain issue was improving but the pain increased again. I also had some amplified sounds in my apartment and I don't recall the last time I had that.

I hope you reply. I haven't read of very many people with quite the same issue but I guess hyperacusis cases vary just as much as tinnitus? :-(

 

[Mila9828]

Damage to the auditory nerve fibers of our hearing abilities cause a change in ones hearing threshold. The more in-going (afferent) nerve fibers you have on each hair cell, the lower your hearing threshold will be, allowing you to hear much more clearly and loudly in the brain to where you can process frequencies very well. The less in-going nerve fibers you have and the more out-going nerve fibers you have which have been found to replace these lost nerve fibers, cause a shift in your hearing threshold and therefore you will not be able to "process" higher frequencies as the conversion of the sound wave between the inner ear and the brain will be drowned out by whichever sound wave contains a higher volume of dB. For example, if you have classical music playing in a speaker and next to it you have a whole construction crew working dismantling a building, the louder dB will be won by the group on the right and therefore your lower threshold will not allow you to process the softer and quieter sound waves of the classical music playing on a speaker to your left. Noises seem louder in the brain but they aren't painful unless you've first damaged these in-going nerve fibers and your brain has been introduced to this new change in the mechanisms of emotionally informational processing. These in-going nerve fibers are what control the brains "gain knob".

Damage these in-going nerves and the brain will be caused to turn up it's "gain knob" thus causing pain from noise at first and after so many months of adapting to this new change in "hearing", you should not feel as much sensitivity and pain to noise, yet sounds will still become much louder and it will be harder for you to process sounds in noisy areas, hence older adults who use hearing aids to try and process sound better. Hearing aids only amplify sound waves into your inner ear which does not solve anything.

Scroll down a bit on this website and it talks about hidden hearing loss, hyperacusis, nerve fiber loss, and hearing thresholds.

http://hyperacusisfocus.org/innerear/

This sounds like me. Is there any way I'll be able to gain my hearing back? When I'm in a car I can only hear loud noises, I can barely hear myself whisper...

 

[Mister Muso]

Bumping this thread as it really gives me hope.

I feel my loudness hyperacusis has been easing since I got it nearly 3 years ago. It's not been a linear easing, but about once a year it seems to ease over a few weeks, or even just in a day or two.

This seems to be similar to the easing mentioned in the OP although he describes pain hyperacusis symptoms compared to mine. Maybe there is a commonality in the healing process for some of us.

 

[Rockman]

This sure gives hope!