Introducing Noise for Hyperacusis

I've read many success stories about hyperacusis patients introducing noise, listening to music etc. etc.

While I have had a few setbacks and little sign of recovery, my hyperacusis is not preventing me from going out, working etc. but it does make social situations awkward and unwanted.

I don't really need to wear earplugs in many situations outdoors but my hyperacusis is bad enough to the point where a conversation slightly above normal level can trigger my loudness hyperacusis and a consistent conversation can leave a burn in my jaw.

I visited an audiologist and they told me to always have noise in the background. If I listen to music for a few hours on a low volume (on a good external speaker), I don't experience loudness hyperacusis but I do find a lot of irritation and burning even though the sound itself is not too loud.

My question is, should I listen to music and sound through my speaker to try and 'desensitise' me even if it is causing the burning/irritation feeling? The audiologist basically said listen to it all day but I'm not sure that doing something that causes me a lot of irritation/burning will help in the long run. Should I perhaps try it for 20 minutes if it doesn't cause irritation, and then 21 minutes the next day etc. etc.

While the constant irritation and burning are annoying, I could put up with it if I might get better. But as I said, I'm not exactly sure that it will get better from this. Furthermore, sometimes after being extremely irritated from say listening for 3+ hours, I find my other symptoms such as loudness hyperacusis can get worse.

At the moment my primary goal is to make sure I don't get worse which is why I'm worried about the advice I was given by the audiologist which was basically to listen to music in the background all day.

Any advice would be appreciated.

Thanks.

 

Seems like you have noxacusis. Your audiologist might be trying to treat loudness hyperacusis. I have both of these conditions, and from my experience “pushing through” the noxacusis burning doesn’t help at all, and in fact has led me to serious setbacks.

When my ears burn constantly, I rest them until they don’t burn. That said, having pink noise on constantly doesn’t cause my ears to burn. Not sure why because music definitely burns after a while.

My approach is gradually increase exposure duration and volume, and rest/protect when it hurts. It’s an incredibly long process and progress frequently gets wiped on setbacks, but I have been slowly trending upwards over the past couple years. Like you I can live a pseudo normal life, I just can’t handle sounds and my ears burn if I expose myself to too much.

 

When my ears started to react to all kinds of everyday noises and particularly bad to anything artificial such as TV and radio, I was very reluctant to accept that listening to music or watching a movie wouldn't be possible for me anymore. I've tried all kinds of things, because like your audiologist I felt that it's a matter of toughening up. It wasn't. And because of that I lived in as quiet an environment as possible for a very long time. On some days that meant earplugs as well as over-ear protection because otherwise the fluttering / spasms in my ears would get too painful. By now, things have improved a little and I can start my days the way I have before I was hit by hyperacusis, but my ears become more sensitive over the course of the day so when it gets to a certain point I need a physical barrier to protect my ears from incoming noises.

Telling you my little story probably isn't all that helpful to you but what I've been meaning to say with it is, listen to your body. If something is painful, don't torture yourself just because somebody who has never experienced this particular kind of pain feels you "need to man up". Allow your ears some rest and, hopefully, time to heal and maybe in a couple of weeks or months (it's been more than a year for me) it gets to the point your hyperacusis won't go into overdrive over the most silly of noises.

Best regards,
Leila

 

How long have you had hyperacusis?

 

Probably 20 years but very mild and manageable. I didn’t really notice it until 2017. Unfortunately I didn’t realize what hyperacusis was or how urgent it was for me to protect my ears until after I had a severe noise injury in 2019 that basically ruined my life as a musician. I am still trying to recover from that and have had decent progress. I doubt I’ll ever be the same until better treatments arrive in the next decade or so. But I can function and am not trapped in a room 24/7.

 

Thanks for the reply.

I suspected that pushing through the burning is not the way to go.

I feel much better when I have avoided problematic noise for a few days.

I think I will go down the route of short exposure rather than listening all day as suggested by the audiologist.

 

Your story is definitely interesting and helpful.

The one thing I am consistently seeing on these forums is the importance of rest.

This is the opposite of what was suggested by my audiologist but I do not believe my audiologist is a specialist in hyperacusis.

I have booked a consultation with one of the UK's top hyperacusis researchers next month (Dr. Hashir Aazh) so I'm interested to find out a little more from a researcher in the field.

 

I listen to pink noise through above the ear sound generators. I have been doing this for approximately six (6) months and have really not seen any improvement. I wonder if I should go against conventional wisdom and protect my ears 24/7 for a week and see if this helps. Some people have apparently improved with this approach.

Fortunately, I do not have pain from sounds. It is just very annoying, uncomfortable, and almost a startle type of response. I only get it from certain high frequencies (squeaky floors, opening a bottle of pills, turning the lock on a door, plastic bags, etc.).

 

I have not read many success stories for patients with pain hyperacusis, people who truly had pain derived from sound.

So which are the success stories you have read?

 

I didn't want to believe it myself, but it really made a difference. Initially every little thing like eating an apple or scratching my head set off the spasms (I have no better word for it because that's how it feels to me) in my ear. I felt my life was over because so many things in my everyday life revolved around / depended on me being able to hear and interact with my environment. In the beginning I tried to do things as normally as possible but it got too painful and I was forced to reconsider. There was a great lack of understanding towards my condition and people constantly got in my face about how unhealthy it was to live like a recluse and only communicating via text or mail. Ironically, Corona and self-isolation made my life a lot easier in this regard.

What I've learned from this experience is that we've all been trained to be people pleaser and that you can tell how serious a condition is when it gets to the point you no longer give a f*** about anybody else and only do what is good and right for yourself.

I wish you the best of luck for your consultation with Dr. Aazh. Hopefully he will find something that makes your suffering go away or, at the very least, a little more bearable.

 

As someone who used to get pain from noise I can give my two cents.

After I got my tinnitus (from loud concerts), roughly 2 weeks afterwards I started getting pain from noise. It started slowly with stuff like plates and cups etc. hurt my ears, then the sound of my voice hurt me so I had talk in lower volume. Naturally headphones were out of the picture. Even in the lowest volumes using it could randomly hurt. Trying to live a "normal" life with social activities etc. was too painful and tiresome. My life consisted basically of taking hours long walks in the forest and browsing internet.

However after maybe 2 months of this I had become quite a recluse, refusing pretty much all social life, and because of this I started antidepressants and medication to relax me, but to my surprise the ear pain went away with the medication, which I still can't understand. I feel l that I was extremely lucky. My ear pain was the spasmic, fluttering and burning type so to speak.

The couple of months with ear pain feels now more like a fever dream (this was almost 4 years ago). Nowadays I live quite normal life. I have went to a few concerts (with quality ear plugs of course) and I even use headphones despite many recommending against them (gradually introducing headphones back to my life has not had any negative effects on me so far).

This is quite a ramble (and not very coherent due drinking alcohol right now) but hopefully it helps someone. I can't speak for all of who have had painful hyperacusis/noxacusis and who have had it longer or more severe but at least here is one success story I suppose.

 

There are actually quite a few stories of people who improved from pain hyperacusis and can now lead a somewhat normal life with some restrictions. These are the ones I know from the top of my head, but there are certainly more:

@serendipity1996, @Marin, @weab00, @arctic loon

 

I have read the forum for a long time, and read some stories, but none of them resemble my personal experience with hyperacusis, so I am a bit skeptical about spontaneous recoveries from true hyperacusis.

There is also a guy that posted here very briefly, and told also on YouTube how a trip to NYC gave him hyperacusis and he recovered. To be honest, that person never had hyperacusis, as hyperacusis produced by a true noise trauma does not happen just because someone spent a weekend in a noisy city... it takes a lot more sound to do real damage, and produce true pain hyperacusis.

 

@Juan, why dispute/question someone that have told they have hyperacusis, with pain, and did recover - fully or at least to some extent?

Who could tell, other than themselves, whether it was "true" hyperacusis with pain or not?

Just asking... I'd rather applaud those that do come back and post a Success Story, then question their story (unless it's obvious nonsense).

 

Can I ask what medication you went on that helped?

 

Is there any more to your story? Yeah what medication? I keep reading stories of how meds helped some people like crazy.

 

This forum is rampant with questioning others experience with the myriad of conditions we suffer from. I see it almost daily with someone telling someone else how their experience is not legitimate.

Currently it’s most evident with those suffering issues related to COVID-19 vaccines. They repeatedly have to stop in the thread and remind people that correlation doesn’t equal causation and they put forth conspiracy theories of their own that an anti-vaxx group is creating fake accounts to skew the data.

I see people telling others what noises can and can’t hurt them, what can and can’t cause setbacks, what noises can and can’t be lived with.

People especially love to say that people who are struggling to deal probably have underlying psychological problems.

Everyone’s individual experience and the things they pick out with their confirmation bias are seen as the only legitimate way things can be. It’s very off-putting on a support forum honestly.

 

I think Clonazepam helped me, but with middle ear issues related to hyperacusis and pain, not inner ear ones. Like relaxing the tensor tympani and stapes. If I take it now it does make my tolerance for some noise higher, but it’s the false kind where once I’m off it the pain is worse because I irritated it without realizing it.

 

That’s what I’m afraid of damn. I don’t want to get false hope, push it, then when I come off I get worse.

 

@KDMG, the audiologists know nothing about pain hyperacusis, they treat only loudness hyperacusis, like @chinup said. I had/have burning pain hyperacusis for 9 months, 24/7, and I can say that only rest helps. My pain started to fade a little 2 weeks ago, I have pain and pressure but not that horrible and not as much as some months ago.

There are indeed some success stories, but unfortunately when I spoke personally with some of the people in that list, some of them did not have pain hyperacusis and some had setbacks in the last months.

https://www.tinnitustalk.com/posts/610106

 

Whether one has hyperacusis with or without pain, one of the best treatments is wearing white noise generators and having regular counselling. Hyperacusis with pain can be treated because I once had it. The pain was so severe during conversation with anyone, I had to ask them to please lower their voice as my ears hurt. Treatment for hyperacusis is not quick and can take up to two years.

If a person has additional health problems besides hyperacusis and tinnitus, treating hyperacusis can be difficult.

Michael

 

@Michael Leigh, I understand your good intentions, but I think it's not appropriate to say this, considering that there is one single study that proves it.

Also there are many people who got worse from this, myself included, I cannot tolerate any kind of artificial device. And I have been doing counselling for almost 1 year.

I am curious how long a pain episode lasted for you? Because for me it's non-stop, even in silence, even during nights. Non-stop since April-May. This month it got a bit better.

Please read the success stories, there is not a single case that mentions "I healed my pain hyperacusis using white noise generators".

If this white noise generator treatment really worked, there wouldn't be any (pain) hyperacusis in this world.

 

Did you have any difficulty in tolerating the white noise treatment?

Where you using one of those ear devices or a regular speaker?

Would you be willing to provide a bit more info about your white noise treatment and how it made your symptoms better?

I have tried playing pink noise out of a high-quality speaker and it starts to bother me after maybe 20 minutes and really bothers me if I play it for 1+ hours.

 

I appreciate that not everyone is the same @Taw and therefore, some people may not have a complete success wearing white noise generators and having counselling to treat hyperacusis and eventually cure it. However, too many people pay attention to studies that are biased against any form of treatment for hyperacusis whether with pain or not, and to top it all they haven't even tried such a treatment so will never know if it will work for them.

I wish you well.
Michael

 

No, I did not even though my hyperacusis was very severe. Contrary to what a lot of believe, hyperacusis, whether with pain or not, can be treated but it must be done correctly. Slowly introducing white noise generators to the auditory system and having regular counselling is the way to treat this condition. It is negative thinking and being convinced by people and studies making one believe hyperacusis cannot be treated and I don't believe this is the case.

I had TRT treatment wearing proper white noise generators and having regular counselling with my hearing therapist for two years. At the end of treatment the hyperacusis was completely cured and has remained this way for over 20 years.

Please go to my started threads and read my articles on TRT. I explain in detail how hyperacusis and tinnitus can be treated. Read my post titled: Hyperacusis, As I See It, also on my started threads.

You may need professional help with an audiologist that specialises in tinnitus and hyperacusis treatment.

Michael

 

Can you share who from the list did not have pain and who had setbacks?

 

Good to hear you improved. Can you share which medications you took when you were treating for depression that may have healed your hyperacusis?

 

Sorry for taking so long to respond. I rarely go to these forums nowadays. I was prescribed something called Oxamin/Opamox for relaxing/sleep and SSRIs for depression.

What I forgot to mention was that usually something like going to a grocery store was alright (although I was a bit anxious about the music/loudspeakers at times) but at home even smallest sounds could be discomforting or painful. I think in my case the ear pain was more mental than physical which might explain the rapid recovery with medication. I am sorry I can't offer more than this as I don't know either what exactly happened. Also I did not have too much hyperacusis although I was able to hear minus decibels on some frequencies.

 

Sorry I cannot share private conversation, I am sure you understand.