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wileycat66

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Posts: 2
Reply with quote  #1 

Hello - 

Thank you for being here and for the existence of such a board.

I have a few questions. I will start by telling my story of how what I believe is hyperacusis started: 

I was at a music festival campout in the woods of New Mexico doing video art for two nights straight at the end of last August. I have done this before, and never had an issue, even without ear plug use. (I don't do these super loud music events often - like once a year.) 

By the second night, I noticed some ear pain come on, but I thought it was just coming from my head. (hard to explain, but there it is.) It went away.

Over the next couple of weeks, I noticed ear pain that seemed to come and go - in both ears. As it seemed to be gone after a while, I  listented to a lot of music on youtube and then it came back extra bad. I read one article that descirbed the kind of pain I've had as a bad sunburn deep within the ears. (This is what the pain feels like to varying degrees, along with a sort of fullness.) 

It was so bad that everything seemed really loud to me. I could hardly talk to anyone for weeks without ear plugs. I went to my primary care, and while he did not see anything obviously wrong inside my ear, he prescribed steroids, which I took for seven days. Those really helped the pain. I also went to an ENT doctor. 

They tested my hearing and said it was fine other than I was having an issue hearing a certain pitch in my right ear. I am 53 and have been exposed to enough loud music in my life, so I was surprised my hearing is basically ok, which then left me wondering if one has hyperacusis, how would they know? But I guess so....

The doctor told me to just give my ears a rest for a while and that for most people, this sort of thing goes away on its own. He also wondered if my TMJ issue is part of the problem. I had a very severe TMJ injury during a car accident many years ago and had three surgeries on them, but they don't really bother me that much anymore.

I also have Fibromyalgia and I somehow wonder if there is a correlation between this ongoing ear pain and my lowered tolerance for pain from my dysregulated nervous system in general. I'm wondering if something got switched on in my brain the wrong way around this acoustic trauma. 

Soemone told me that they thought the music at this festival got super loud on Saturday night and that the high ends were too loud, that the sound system was not as good as it usually is, and no one was monitoring it like they usually do when they hire the real sound nerds to run their own systems. 

It was a bit of a surprise to me that the ear pain got so much worse after just listening to music on youtube through my MacBook Pro laptop speakers. 

I wore a basic set of ear plugs for a while made by EarDial and then things seemed to get better, but I have to say I have set-backs with this. 

While the ear pain is not as bad as it was, I have flare ups when I listen to certain pitches in music - like high pitches. I really don't listen to that much anymore. 

If there is just a lot of loud noise in a restaurant, that will set it off as well. 

But I can handle regular conversations at regular volume, I think. But too much of it sets off a minor amount of pain still. 

My friends invited me to go dancing to a DJ event next weekend, but I don't even want to chance a worse set-back - even with ear plugs. 

I am wondering if I should just give it a lot more time and not listen to music or just at very low volumes. Wondering if anyone can relate? Do you just stay away from music or only listen to certain pitches for so long at a low volume?

I also understand that there are expensive ear plugs one can buy that cancel out certain things. Do you use those if you still listen to music? 

Thank you!  

Catherine 

 

 

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Rob

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Posts: 57
Reply with quote  #2 

Catherine, I suggest you locate a hearing healthcare clinician who is experienced in diagnosing and treating hyperacusis, discuss your symptoms, and ask the clinician to examine you to determine whether you have hyperacusis.  A frequency-specific loudness discomfort level test could be administered to you to see if your tolerance of sound is normal or below normal.  This test is different from the general hearing exam your ENT administered and may help to shed some light.

The ear pain and fullness could be due to a number of conditions.  One possibility, as your ENT suggested, is TMJ may be playing a role.  That steroids helped your pain suggests that the pain is not due to a lowered tolerance of sound but to something else.  For now, I would take a break from listening to YouTube videos (which seem to exacerbate some of your symptoms) or from being in very loud settings like the DJ event or in a very loud restaurant.  But I would also stop using hearing protection in any setting where there is normal sound.  You should be perfectly fine listening to music at low to moderate levels or participating in any activity where there is low to moderate sound.          

It is entirely possible to have hyperacusis and normal hearing.

Rob

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wileycat66

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Posts: 2
Reply with quote  #3 

Dear Rob.

Thank you. I will try and find someone who can diagnosis this ongoing issue. 

I am going to continue to not listen to music for a while. It's like something about a pitch sets it off. Or, I have to limit what kinds and keep it at low volume. 

I did read much about steroids helping the inflammatory response in the cochlea (I think that is it) after acoustic trauma. The ENT thought it was good that I was prescribed those.

What I was told by the ENT is that those little hairs get flattened (or something like that) and they just need time to heal. I think it is possible that because I deal with chronic pain, that some nerve in my TMJ area is also set off when the ear things gets set off. 

I do think they need to do the test you suggested and I will find someone to see rather than wait this out. 

It is better than it was for sure, at least. I couldn't even have a conversation with people. Everything was loud and painful. Things don't sound seriously loud anymore, but there is a pain rebound thing around some kinds of sound and environmental noise. 

Thank you! 

 

P.S. I notice that when my ears are hurting, things do sound a lot louder. 

 

 

 

 

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trying

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Posts: 32
Reply with quote  #4 
Yes, a "normal" hearing test only tests if one can hear, i.e. does one have trouble hearing, whereas hyperacusis type testing is seeing what volume one can tolerate sound--the db at the lower level threshold. Certainly need an ENT who tests for tolerance of sound--how loud one can tolerate sounds and the tolerance can be difference for each ear.

I have both CFS/ME Chronic Fatigue Syndrome/ME (and had MCS) and for me the hyperacuis came on in a relapse of cfs/me. As there can be similarities with CFS/ME and fibro, (thought to be in the same umbrella of  health issues) might be worth checking out if there is a connection with your fibromyalgia and the new noise tolerance issues.
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