My Pain Hyperacusis Improved Significantly: Went to a Party without Earplugs and Still Fine

[SummerDreamer]

Hi everyone,

From the beginning of July to middle of September I had what I'd call moderate hyperacusis. Certain sounds would cause a stabbing in my ears and also in my shoulders and back sometimes. I would also get a burning in my ear from being in the city for too long, etc. And from my sewing machine.

However one night I thought screw it I am going to do some music production with headphones, which caused discomfort initially and I went to bed a bit concerned, but the next day my hyperacusis was like 95% gone! I was pretty surprised by this as I've read on here that more noise generally makes people worse. Since then I've been pretty ok, I've been to pubs and bars without earplugs, I even went to a house party a couple of days ago (stupidly without earplugs I know) but still my hyperacusis is fine! I have also been using a rain machine by my bedside for a couple weeks now as recommended by my audiologist so not sure if that's helped but it seems for me that low level noise really helps my hyperacusis, even though it's pain hyperacusis and not loudness at all. A lot of people on here are adamant that only loudness can be helped by noise but I don't think this is always true.

My audiologist specialises in hyperacusis and when I asked her how many people with hyperacusis she had helped she said all of them that she has seen she has been able to help in some way. She also explained to me the mechanisms of hyperacusis which made a lot of sense to me. The only thing which seems to seriously spike my hyperacusis and or tinnitus is stress, but not noise. So it seems that these conditions can be completely different for everyone.

I just thought to post this because it seems most people with hyperacusis try to stay away from noise but in my case it does seem to help.

X

 

[Juan]

To me it does not sound as you have hyperacusis, since hyperacusis reacts to loud noise. For many people hyperacusis is caused by noise exposure that made cochlear damage, and that sort of damage does not go away.

 

[weab00]

To me it does not sound as you have hyperacusis, since hyperacusis reacts to loud noise. For many people hyperacusis is caused by noise exposure that made cochlear damage, and that sort of damage does not go away.

Yeah I'm going to have to agree that this sounds more like phonophobia.

 

[Horrorpopz]

Look if you have hyperacusis and you are doing those stuff especially without protection you are really risking your life, seriously. I have extreme hyperacusis and i cannot even whisper, I do not know why you are feeling better but if you truly have hyperacusis your ae entering in a non return way, just go read about those who got crippled doing that and committed suicide.

I know your intention is to help but you really should delete this post because it could hurt people...

Anyway, I'm really happy you are feeling better.

 

[Croaker]

Well, whatever condition you have, it's good that your symptoms have subsided. Please do not get overconfident and abuse your ears again.

 

[TSmith28]

That's great! I'm very happy for you. I think I might be in the same boat as you because, after a very painful and quite discouraging first month after my hyperacusis diagnosis, I have been steadily improving over the past few weeks despite gradually increasing my overall noise exposure back toward pre-H levels.

In September I was unable to play guitar unplugged, listen to music, or even be around my young (noisy) kids without constant pain. Now an evening of playing guitar (with earplugs) or an ear-piercing shriek from my kids only leaves me with mild discomfort that subsides in a few hours. I'm very hopeful that a normal lifestyle (with situational earplug use) is within reach

 

[SummerDreamer]

I understand that everyone's hyperacusis is different, but I just wanted to share my story and explain that it is possible to get better in some cases. I doubt that I have phonophobia because I do actually experience pain/discomfort with certain frequencies when I am having a spike. Otherwise it's pretty much non-existent. But I do feel like there's a lot of horror stories online and it can lead anyone who has this condition to be fearful for their life (as I was when I read those articles), when it isn't necessarily the case. I understand that it is important to protect your ears but I do believe it is a brain thing which can be managed to an extent, well at least in my case anyway .

X

 

[TSmith28]

I understand that everyone's hyperacusis is different, but I just wanted to share my story and explain that it is possible to get better in some cases. I doubt that I have phonophobia because I do actually experience pain/discomfort with certain frequencies when I am having a spike. Otherwise it's pretty much non-existent. But I do feel like there's a lot of horror stories online and it can lead anyone who has this condition to be fearful for their life (as I was when I read those articles), when it isn't necessarily the case. I understand that it is important to protect your ears but I do believe it is a brain thing which can be managed to an extent, well at least in my case anyway .

X

I agree. I think it's important to acknowledge that, like many diseases/conditions, hyperacusis has a spectrum of severity from mild (like mine) to debilitating. It's certainly possible that severity is correlated to prognosis for improvement. I think it's inaccurate to say that just because someone's hyperacusis improved then it must not be hyperacusis. I'm also a cancer survivor, and despite the fact that some people with the same type of cancer live a long time while others die, it's all the same disease. Nobody would ever say something like "she survived breast cancer, so it must not have been breast cancer".

 

[Orions Pain]

I think it's inaccurate to say that just because someone's hyperacusis improved then it must not be hyperacusis.

Improvement isn't why people are saying this story doesn't sound like hyperacusis.

 

[MindOverMatter]

Could not agree more, @TSmith28!

To me it seems like some people have a huge need to show that they are worse out than others. Tinnitus, and hyperacusis, is very subjective. And how we cope with it is very individual.

There are several types of hyperacusis, with and without pain. To discuss whether someone has true hyperacusis or not, what is the point? Any degree of sound sensitivity, whether it's "true" hyperacusis or not, can be debilitating anyhow.

But I do feel like there's a lot of horror stories online and it can lead anyone who has this condition to be fearful for their life (as I was when I read those articles), when it isn't necessarily the case. I understand that it is important to protect your ears but I do believe it is a brain thing which can be managed to an extent, well at least in my case anyway .

Spot on @SummerDreamer.

Negatively loaded thinking and counselling will put fire to your stress level, and that will make you even more miserable.

 

[TSmith28]

Improvement isn't why people are saying this story doesn't sound like hyperacusis.

Please elaborate. Ear pain caused by normal levels of noise, which the OP experienced, is the hallmark of hyperacusis. Maybe I'm missing something?

 

[Orions Pain]

Please elaborate. Ear pain caused by normal levels of noise, which the OP experienced, is the hallmark of hyperacusis. Maybe I'm missing something?

I'll rephrase my thoughts. My issue with this post is that a huge hurdle that sufferers have to overcome is audiologists telling us it's related to stress or in our heads. Most of us DO feel worse with sounds. Summer dreamer said multiple times that her spikes weren't sound related. I mean, read the room?? To come on here and dedicate a post to how you magically cured yourself by listening to music and further spread the message that it's all related to stress is a bit inappropriate

I'm aware that she's just describing her experience, but this "experience" is highly unusual for Hyperacusis and this sort of advice can actually cause harm. Others may feel differently and that's fine

That being said, I am happy Summer Dreamer is feeling better. No one deserves ear issues in any form

 

[TSmith28]

I'll rephrase as my original statement didn't accurately convey my thoughts. First of all, this post is problematic because a HUGE/if not main hurdle a lot of us have to overcome is audiologists telling us that this is all in our head, that it's stress related.
For Summer Dreamer, it clearly is. This obviously doesn't take away from her suffering, and my intention isn't to minimize whatever pain she felt.

At the same time, to come on here and make a post of how you recovered from "moderate pain hyperacusis" by simply listening to music and then resuming to go to bars and parties without hearing protection is a bit of a slap in the face. Perhaps it's just how I'm reading it & taking it a bit to heart, but many of us here HAVE tried to not be "worried" about noise and have only been burnt by those actions.

This sort of "Hyperacusis" experience is fairly rare (spikes not being noise induced) and this advice can actually end up hurting people. Most here stay away from noise because we actually DO get worse from noise. This is my take. I'm sure others feel differently and that's fine.

Gotcha, thanks for clarifying. I'm no expert but I will say that in my case I have improved thanks to using earplugs to protect against any further exposure to damaging noise. And despite feeling much better now (2 months post-diagnosis), I will concede that my ears do still feel quite fragile and mildly uncomfortable even during my good days. Not really sure where I'm going with this other than to agree with the idea that excessive noise does make it worse while avoiding it helps.

 

[Juan]

There are several types of hyperacusis, with and without pain. To discuss whether someone has true hyperacusis or not, what is the point? Any degree of sound sensitivity, whether it's "true" hyperacusis or not, can

The point is there is a guy all over YouTube saying that he went on a trip to NYC and got hyperacusis, and was "cured" in like no time... because that guy never had hyperacusis.

With true hyperacusis a setback would put you in pain for 3 weeks, and during that time any other loud sound would come on top of the setback making like 10 times more damage... and this cycle repeats over and over, and does not go away.

So when people with true hyperacusis complain about not being able to do a lot of things, and some of them cannot work, other people think "hey there's a guy on YouTube that said this is gone in like no time", and it all gets misleading.

Others may think hyperacusis is just a minor thing because people who NEVER HAD hyperacusis get cured of their mental problems from one day to the next.

I have met some people with very bad hyperacusis, in person, and none of them has recovered. One guy I know has had hyperacusis for over 20 years, cannot work, lives on a pension.

 

[MindOverMatter]

I get you @Juan, but you know as well as me that there are many degrees of hyperacusis - even without physical pain related issues. Let's not use energy on arguing what is "true" hyperacusis or not, that doesn't do any good. Our own perception of it is also very subjective.

Anyhow, the last thing this forum needs more of is horror stories. It may become a self fulfilling prophecy if the brain is fed with negativity towards hyperacusis and tinnitus. It is with most other things going on in life. Not having faith and not being positive = greater chance of a worsening condition. Negative counselling will not do any good.

 

[Horrorpopz]

@MindOverMatter,

I'm sorry but avoiding telling horror stories is completely wrong and bullshit.

We who are the horror stories have a right to speak, we shall not be silenced, because we also seek support and understanding just like the mild cases.

Also, I feel it's almost a duty for us in super severe conditions to tell the "horror stories" (our own) and prevent people from getting worse and facing what we face.

 

[lapidus]

Anyhow, the last thing this forum needs more of is horror stories. It may become a self fulfilling prophecy if the brain is fed with negativity towards hyperacusis and tinnitus.

Would you tell someone suffering from terminal cancer not to post in a support group for cancer patients too? Please think a little longer before writing such hurtful comments.

 

[MindOverMatter]

@Horrorpopz

You as me have the right to an opinion. I just said that this forum has way too much negative focus, and many have said the same.

There is of course room for every opinion, and every expression. But newcomers here need to know that most people cope and can live with it.

My point of view.

 

[MindOverMatter]

@lapidus

Read my answer to Horrorpopz... and by no means was it intended as a hurtful comment. Quite the opposite actually. But we are all different, and I accept your opinion.

I have had hyperacusis and tinnitus (for 14 years) myself, so it was expressed with the best intentions...

 

[Orions Pain]

I get you @Juan, but you know as well as me that there are many degrees of hyperacusis - even without physical pain related issues. Let's not use energy on arguing what is "true" hyperacusis or not, that doesn't do any good. Our own perception of it is also very subjective.

Anyhow, the last thing this forum needs more of is horror stories. It may become a self fulfilling prophecy if the brain is fed with negativity towards hyperacusis and tinnitus. It is with most other things going on in life. Not having faith and not being positive = greater chance of a worsening condition. Negative counselling will not do any good.

Why are people so set on criticizing those who share "horror stories"? These aren't fables or exaggerations, these are real people with real experiences that are suffering. Referring to them as horror stories and saying we need less of them is dehumanizing.

Also, if someone expresses their pain or the severity of their case it doesn't mean they're trying to turn this into a competition. They're just sharing their story.

 

[serendipity1996]

For many people, this is the only place where they can vent their frustrations of living with the nightmare (yes, it IS a nightmare) of living with these poorly understood and horrific conditions. The last thing we need is toxic positivity to be enforced here.

 

[MindOverMatter]

Toxic positivity? Apparently it's not okay to have an own opinion here among certain forum members...

If helping people with what I, and many others, believe in is toxic, then so be it. I will keep my positivity up.

Again, it is not my intention by any means to tell that others can't express themselves how they like. After having tinnitus for more than 14 years I know quite a lot about how this condition is, so there is no need to teach me or doubt my reasons.

I have only good intentions, and I know how devastating this condition can be. But my point here is that we could all do good with more positive counselling, and positivity in general. I know very much how hard it is, but I believe in a better chance of slowly getting better with a positive mindset.

That's just my own experience through sound enrichment and CBT counselling for my hyperacusis.

Sorry if anyone misjudged it...

 

[weab00]

That's just my own experience through sound enrichment and CBT counselling for my hyperacusis.

Sorry if anyone misjudged it...

At least you acknowledge it was your experience with TRT, as opposed to Michael Leigh who shoves it down everyone's throats at any given opportunity and will tell you you don't have hyperacusis when it doesn't work for you.

 

[TSmith28]

I agree. I think it's important to acknowledge that, like many diseases/conditions, hyperacusis has a spectrum of severity from mild (like mine) to debilitating. It's certainly possible that severity is correlated to prognosis for improvement. I think it's inaccurate to say that just because someone's hyperacusis improved then it must not be hyperacusis. I'm also a cancer survivor, and despite the fact that some people with the same type of cancer live a long time while others die, it's all the same disease. Nobody would ever say something like "she survived breast cancer, so it must not have been breast cancer".

I'm quoting myself because it bears repeating: "True" hyperacusis can range from mild to severe. And whether mild or severe, all of us have the right (and the need) to be heard on this forum. Success stories and horror stories are equally valuable.

 

[daiso]

Whether it's this board, Reddit, YouTube, wherever there is tinnitus related discussions, there are always people referring to others' sufferings as h***** stories. Come on people, didn't you at one point post your own experience in hope of others reading it and maybe getting some help or comfort? For each, there is real life and blood suffering. It's not a story, it is a tragedy. It's perfectly fine to advocate staying away from these posts if you don't have the stomach for it, but it's absolutely insensitive to call these h***** stories or negative. To me, they are never negative. I learn from people's mishaps to better protect myself and my loved ones.

 

[MindOverMatter]

It's negative when someone tells you there is nothing to do, and it will only get worse. Negative counselling is something I avoid as it will only make you more miserable.

But I agree, every voice and story is welcome in any democratic forum.

 

[lapidus]

It's negative when someone tells you there is nothing to do, and it will only get worse.

But no one is saying that. Every case of hyperacusis on here is different since "hyperacusis" dosen't exist anymore. Some people obviously get better. But they probably had another pathology to begin with than the "horror stories" like me and some other folks on here. Saying "it will get better" is just as bad as saying "it will never get better" since we on here never will know just exactly what type of DST another poster on here has. Toxic positivity is a thing. Look it up.

 

[MindOverMatter]

@lapidus

Agree to disagree. You have no idea how me or any other people have or had anything in regards to tinnitus or hyperacusis. This condition, IMO, has very much to do with subjectivity as well, because we do react differently as humans. That relates to many aspects of life.

And if you like to call it toxic positivity, then fine. I'd rather have toxic positivity any day then toxic negativity. There is room for both, but I prefer positive thinking - whether you want to call it toxic or not. There is a lot of research on this, especially in regards to CBT.

 

[lapidus]

@lapidus

Agree to disagree. You have no idea how me or any other people have or had anything in regards to tinnitus or hyperacusis. This condition, IMO, has very much to do with subjectivity as well, because we do react differently as humans. That relates to many aspects of life.

And if you like to call it toxic positivity, then fine. I'd rather have toxic positivity any day then toxic negativity. There is room for both, but I prefer positive thinking - whether you want to call it toxic or not. There is a lot of research on this, especially in regards to CBT.

Exactly. I don't know how you had it. Just as you don't know how me or other people have it. And as the research into "hyperacusis" stands today, it doesn't exist. So don't make assumptions. That's my whole point. You can give support without toxic positivity, it's entirely positive. Just don't assume that whatever you had is the same thing the next person is going through, because it probably isn't.

 

[MindOverMatter]

I never assumed anything, like you are. Just because someone is being positive, toxic in your eyes, has necessarily NOTHING to do with either how their own tinnitus or hyperacusis is, or has been, at any point. Anyways, no point in wasting more negative energy on this.