Could Anyone Experienced in Hyperacusis Answer a Quick Question?

[JC1859]

As ridiculous as it is, it appears most websites are clueless when it comes to providing basic information about this condition.

I've had it for pushing five months now. I've been avoiding loud noises as I believed that was the way to help my ears recover, but am I supposed to be exposing myself to ''normal'' everyday noises to reduce my sensitivity? Is that a DIY sort of retaining therapy? I read you can do retaining therapy but that confused me, as why would you need to pay for retraining, if exposing your ears to normal noise is retraining?

A good example is the TV. I watch a lot, and I have to listen to it at a low volume right now as otherwise I feel that uncomfortableness. Should I be watching it at a normal level, even if it causes discomfort, to help my ears?Or could that make it worse? Is Hyperacusis a mental thing and not physical? I'm really, really confused and would really appreciate some basic information. My life has been really bad since I got this, I'm scared to go anywhere where there is noise at the moment.

Thanks

 

[I who love music]

Mine is triggered by high pitched sounds, then it lasts for days. But when I put cotton in the affected ear, it stops. I leave the cotton in for a few days because after it starts, anything makes it thump. So I avoid those high pitched loud sounds all the time.

 

[Telis]

As ridiculous as it is, it appears most websites are clueless when it comes to providing basic information about this condition.

I've had it for pushing five months now. I've been avoiding loud noises as I believed that was the way to help my ears recover, but am I supposed to be exposing myself to ''normal'' everyday noises to reduce my sensitivity? Is that a DIY sort of retaining therapy? I read you can do retaining therapy but that confused me, as why would you need to pay for retraining, if exposing your ears to normal noise is retraining?

A good example is the TV. I watch a lot, and I have to listen to it at a low volume right now as otherwise I feel that uncomfortableness. Should I be watching it at a normal level, even if it causes discomfort, to help my ears?Or could that make it worse? Is Hyperacusis a mental thing and not physical? I'm really, really confused and would really appreciate some basic information. My life has been really bad since I got this, I'm scared to go anywhere where there is noise at the moment.

Thanks

From personal experience I would ease into turning the TV up. I find when my ears get sore from noise my H gets worse and my ears get that closed bruised feeling for a couple of days. Again I would take it slow, I think personally that if your ears hurt your body is telling you to slow down. When I first got T I went pretty hard, exposing myself to too much too quick. I feel I have a permant worsening of T and H becasue I was following the guidelines for people with healthy ears. I played hockey, went to pubs etc. this did not help my H, it went through the roof actually. Maybe everyone is different but I would advise going slow and taking very gradual steps and if your ears hurt stop it, put ear plugs in or turn it down.

 

[JC1859]

Thanks, both. If anyone could directly answer my questions that would be great though. I'm looking for the basic rules of this condition.

 

[lapidus]

I think @Dr. Nagler is the one you should be asking since he treats H.

 

[Dr. Nagler]

Thanks, both. If anyone could directly answer my questions that would be great though. I'm looking for the basic rules of this condition.

I think @Dr. Nagler is the one you should be asking since he treats H.

In my opinion the most basic of all the "basic rules" is obtain an accurate diagnosis.

Last month I saw three patients whose lives were markedly affected by what they were absolutely convinced was hyperacusis, but after a thorough evaluation it turns out that two of the three had something else entirely.

With hyperacusis any of a number of desensitization techniques will suffice nicely. But all the desensitization in the world will not help the two individuals I mentioned in paragraph above. They will ultimately do fine with appropriate treatment, I believe, but it won't come from addressing the hyperacusis that they do not have.

So, as with any medical condition, in hyperacusis a correct diagnosis is key.

Dr. Stephen Nagler

 

[JC1859]

Thanks, both.

I have seen an ENT and he said it was Hyperacusis, so, I mean, is that a sufficient diagnosis? I had a sound test right before I saw him, then went in and saw him several minutes later. He didn't actually say it was Hyperacusis, just that he thought it would get better. It was only after I mentioned the word ''Hyperacusis'' he said yes, that was definitely it.
Thanks.

 

[Dr. Nagler]

I have seen an ENT and he said it was Hyperacusis, so, I mean, is that a sufficient diagnosis? I had a sound test ...

I do not know if that's a "sufficient diagnosis" or not. Depends on what sort of sound test you had and whether or not your ENT knew how to interpret the results correctly. To be honest, it sort of bothers me that you were the one who had to bring up the term hyperacusis, rather than the other way around.

Anyway, to your point. Assuming that you have uncomplicated hyperacusis (and not Lyme, misophonia, etc.), then the proper treatment involves desensitization, by which I mean the gradual, systematic, purposeful introduction of sound to push your loudness discomfort thresholds back towards normal. My strong preference in that regard is the use of broadband sound with wearable devices (e.g., TRT Category 3 protocol), since it is the easiest, quickest, most direct, and most successful.

Hope this helps.

Dr. Stephen Nagler

 

[JC1859]

Thanks a lot, much appreciated.

The ENT seemed like he knew how to interpret the hearing test, he was fairly informative, though I can't remember really what he said He pretty much said everything about the situation bar the actual term ''Hyperacusis'' so I would hope he knew what he was doing.

It isn't Lyme or Misophonia, so I would assume it is ''uncomplicated.'' Can I not just use my own means of desensitization, like for example, listening to the TV at gradual higher sounds? If so, could anyone provide a link offering guidance on this?

Thanks again.

 

[beemovie]

Thanks a lot, much appreciated.

The ENT seemed like he knew how to interpret the hearing test, he was fairly informative, though I can't remember really what he said He pretty much said everything about the situation bar the actual term ''Hyperacusis'' so I would hope he knew what he was doing.

It isn't Lyme or Misophonia, so I would assume it is ''uncomplicated.'' Can I not just use my own means of desensitization, like for example, listening to the TV at gradual higher sounds? If so, could anyone provide a link offering guidance on this?

Thanks again.

I got it about a year ago. At first I could not even stand the sound of opening a envelope or the sound of a plastic bag. I would have to wear earplugs when I opened the mail or moved paper. I have slowly got better but things still are louder then they should be. Things like the sound of a plastic water bottle still sounds terrible to me. Some people that have it really bad have trouble even leaving the house. I personally would not force yourself to listen to anything set too loud including the TV. You will know when it is ok to make it louder because your ears will tell you. I tried the forcing and for me it did not help at all. Stay away from any type of event that is too loud. But try and not wear earplugs as much as possible for normal day sounds.

 

[JC1859]

Thanks, Bee.

I don't appear to be as bad as a lot of people on here. Loud sounds make me tense up, but it certainly isn't as extreme as yours. I was at a football match the other week, in the away end, so two thousand blokes singing loudly, and it made me tense up a bit, irritated my ears a bit, but I could tolerate it, and no residual pain afterwards.

When the tannoy came on right before the matchplaying music I had to stick my fingers in my ears though. My brother was sat with me and pretended he didn't know me, I think

Anybody else have any advice? This seems like a good, supportive forum, but finding info on the basic do's and don'ts is proving difficult.

 

[Telis]

Thanks, Bee.

I don't appear to be as bad as a lot of people on here. Loud sounds make me tense up, but it certainly isn't as extreme as yours. I was at a football match the other week, in the away end, so two thousand blokes singing loudly, and it made me tense up a bit, irritated my ears a bit, but I could tolerate it, and no residual pain afterwards.

When the tannoy came on right before the matchplaying music I had to stick my fingers in my ears though. My brother was sat with me and pretended he didn't know me, I think

Anybody else have any advice? This seems like a good, supportive forum, but finding info on the basic do's and don'ts is proving difficult.

If you can handle a football game no ear protection I think it's safe to say you do not have H...Maybe just some sensitivity to really loud sounds.

 

[JC1859]

No, it is Hyperacusis. I've been in crowds like that before and been fine, but it was definitely bothering my ears. And all sounds are louder now. Just reading some of the cases on here make me realise it isn't as extreme, but it's still a big problem. The next time I go to a match I will use protection without a doubt.

 

[SueR]

I went to an opera today. Wore an ear plug and my ear is still feeling over-worked. Need to rest my ears for a bit.

Actually, for the past couple of weeks, my H has been more intense. I'm hoping it settles back down.

 

[Street Spirit]

In my opinion the most basic of all the "basic rules" is obtain an accurate diagnosis.

Last month I saw three patients whose lives were markedly affected by what they were absolutely convinced was hyperacusis, but after a thorough evaluation it turns out that two of the three had something else entirely.

With hyperacusis any of a number of desensitization techniques will suffice nicely. But all the desensitization in the world will not help the two individuals I mentioned in paragraph above. They will ultimately do fine with appropriate treatment, I believe, but it won't come from addressing the hyperacusis that they do not have.

So, as with any medical condition, in hyperacusis a correct diagnosis is key.

Dr. Stephen Nagler

How can anyone " think" they have hyperacusis and NOT have it?!

I believe you must be referring to misophonia and I am aware of no treatment for that.

 

[Dr. Nagler]

How can anyone " think" they have hyperacusis and NOT have it?!

They could have recruitment, they could have misophonia, they could have hyperacusis plus recruitment, they could have hyperacusis plus misophonia, they could have recruitment plus misophonia, they could have all three. Hell, they could even have Lyme Disease masquerading as hyperacusis. Lots of possibilities.

I believe you must be referring to misophonia and I am aware of no treatment for that.

Interesting. Most of the patients I see with misophonia do quite well with individualized treatment tailored to their needs. Some don't. Most do.

Dr. Stephen Nagler

 

[Street Spirit]

They could have recruitment, they could have misophonia, they could have hyperacusis plus recruitment, they could have hyperacusis plus misophonia, they could have recruitment plus misophonia, they could have all three. Hell, they could even have Lyme Disease masquerading as hyperacusis. Lots of possibilities.



Interesting. Most of the patients I see with misophonia do quite well with individualized treatment tailored to their needs. Some don't. Most do.

Dr. Stephen Nagler

Recruitment makes sense.

Lyme disease masquerading as Hyperacusis? doesn't it just cause hyperacusis? I know one person with that, she has been treated but still has H.

Dr. Nagler it was late and I was thinking of misophonia as in the aversion to certain sounds...like.what my bf has had since he was 11...an aversion to the sound of people eating.

I find it interesting that anyone would develop misophonia without H...

 

[Dr. Nagler]

I find it interesting that anyone would develop misophonia without H...

I'm not sure, but you might be equating hyperacusis with decreased sound tolerance. They are not one and the same. All people with hyperacusis have decreased sound tolerance, but many people with decreased sound tolerance do not have hyperacusis.

Regarding misophonia, all people with severe hyperacusis almost by definition must have misophonia as well. How could they not? But there are many folks with misophonia who do not have hyperacusis.

Dr. Stephen Nagler

 

[Street Spirit]

I'm not sure, but you might be equating hyperacusis with decreased sound tolerance. They are not one and the same. All people with hyperacusis have decreased sound tolerance, but many people with decreased sound tolerance do not have hyperacusis.

Regarding misophonia, all people with severe hyperacusis almost by definition must have misophonia as well. How could they not? But there are many folks with misophonia who do not have hyperacusis.

Dr. Stephen Nagler

..Dr.Nagler you are making my head spin, but I don't have an emoji for that

So it IS possible to have misophonia, as in, decreased sound tolerance and NOT have Hyperacusis which is decreased sound tolerance. ..so basically you would come to this diagnosis through an LDL test?

which by the way is hard because someone. could show decreased sound tolerance but how would you know what it is caused by?

I am intrigued.