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florian_89

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Reply with quote  #1 
(this post is also on ttps://www.tinnitustalk.com/threads/burning-nerve-pain-near-cheek-at-any-sound.28405/)

Hi all,


I want to describe my problem, which is sound related and called hyperacusis, but the form of it is very weird.

Ok lets start...

3 years ago I had an acoustic shock on my left ear.
I was a hobby music producer back then.
I was sitting a too long in front of speakers and was listening to a higher frequency song too long.
Suddenly my left ear was cramping, it was like a sting.
Since then the left side near the ear feels cramped. Like tightened .

Every time when I hear a sound my left side of the face, underneath the cheek starts to cramp. Its like electric impulses goes through it. There is this connection between sound and cramp.
My tongue also cramps to the left side sometimes.
It feels like a burning.

The thing is the ear does not hurt itself. It guess it just sends out this signals to cramp, like it doesn't want my hearing to get worse.

When I drink a few beers, the connection between sound and muscle or nerve cramp (???) is not there anymore. And I feel better. But usually I feel very odd and not good, because of the all day cramping feeling.


Last week ago I found out, that when I open the mouth about a 1 cm the connection between sound and cramp does also not exist.

I tried to open the mouth about 10 hours by biting on a piece of cotton, to see if the ear starts to hurt, when I have a normal day with sound.

So after this 10 hours I closed the mouth and the cramps where not really noticeable and my ear did not hurt.

When I closed the mouth, the cramp started again. 


Does anybody have something similar? Or any idea what I should do?


Thank you for reading anyway.

Greetings Florian
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Aplomado

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Reply with quote  #2 
Well, florian, that is really weird!

I won't venture to say if you have hyperacusis or not, but I had a thought about you keeping your mouth open- you might try wearing a mouth splint (made for TMJ disorder or to prevent tooth grinding) and see if that helps.  Might be more comfortable than a peice of cotton if it holds you mouth open enough.
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florian_89

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Reply with quote  #3 
Quote:
Originally Posted by Aplomado
Well, florian, that is really weird!

I won't venture to say if you have hyperacusis or not, but I had a thought about you keeping your mouth open- you might try wearing a mouth splint (made for TMJ disorder or to prevent tooth grinding) and see if that helps.  Might be more comfortable than a peice of cotton if it holds you mouth open enough.


Hello Aplomado,

It's so weird, today the pain at my cheek is completely gone. I can now clearly feel my left ear burning inside. Maybe my facial nerve, is affected somehow by my inflamed chochlea, that's the only thing I could think off.

I am pretty sure I have some kind of hyperacusis, since my ear feels pain at any sound - but only on the left and I don't hear it louder.

Peace
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florian_89

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Reply with quote  #4 
Quote:
Originally Posted by florian_89


Hello Aplomado,

It's so weird, today the pain at my cheek is completely gone. I can now clearly feel my left ear burning inside. Maybe my facial nerve, is affected somehow by my inflamed chochlea, that's the only thing I could think off.

I am pretty sure I have some kind of hyperacusis, since my ear feels pain at any sound - but only on the left and I don't hear it louder.

Peace


I found out that with tounge movements to the left front the nerve is not noticeable, like the spike could not be transmitted
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Aplomado

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Reply with quote  #5 

Hello,

Most of the time, folks with hyperacusis have sound sound "louder"- and this may or may not come with pain (like burning).

However, there are exceptions- I have hyperacusis and sometimes sounds that don't sound loud- esp drawn out ones- will make my ears start burning.  So maybe you have an odd variant of hyperacusis, it is hard to say.

Personally, I have found sound therapy helpful at reducing or eliminating this pain (I have had repeated relapse, which is why I am still doing this).

If you believe you have hyperacusis, this is what I would do:

1) Find an audiologist that does TRT for hyperacusis.  Make sure they will sell you wearable sound generators.  Don't bother if they won't.  Go to them.  They should do a Loudness discomfort level test to tell you if you have hyperacusis.

2) Try sound therapy.  The wearable sound generators are usually helpful (they are to me).  Also, pink noise therapy from a CD or wav file (sold at this website) is helpful.  There are different ways to do pink noise therapy.  Some people leave it on at a low level all the time.  I find it helpful to listen 30 min a day, starting off very low and increasing 1 db at time, as comfortable, slowly adjusting to the volume.  When I can listen to around 61 db comfortably for 30 min my ears don't hurt much.  When I am around 71 db, they are much much better than than.

Your results may vary.  This is what works for me.

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Ed

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Reply with quote  #6 
A burning sensation down the right side of my face is one of my primary symptoms. Like you, I discovered that alcohol numbs this very effectively, nothing else comes close. I don't drink because of this - I can't risk becoming addicted to the stuff as a form of self medication. The problem of alcoholism would be far larger than the problem of a burning sensation. 

It's annoying because it must mean something - It's like a clue to the mystery, but I have no medical training so it's useless for me to even speculate.
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cactus

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Reply with quote  #7 

Often the tiny muscles in your ear become overly active after a noise injury. They are located in very close proximity to certain nerves in your face, which can cause exactly the symptoms as you describe (I had many of them myself, pain in the cheek/jaw upon noise exposure, sometimes extending through the rest of my face).

The muscle is called the tensor tympani and it can irritate the trigeminal nerve, which runs through a large part of the lower half of your face. Try a search on 'tonic tensor tympani syndrome' for more information. Sometimes the muscle can even cause your eardrum to pop and spasm. It makes sense that alcohol reduces the symptoms as alcohol acts as a muscle relaxant and reduces nerve activity. 

When hyperacusis is treated these symptoms go down as well. It should be noted that these symptoms are often exacerbated by an exaggerated subconscious startle reflex to sound, and therefor can be (partially) psychosomatic, so any misophonia/phonofobia (dislike or fear or sound) can contribute to your symptoms. If you subconsciously clench your jaw this will also make the symptoms worse. Hope this helps.

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Ghirin11

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Reply with quote  #8 
Quote:
Originally Posted by cactus

Often the tiny muscles in your ear become overly active after a noise injury. They are located in very close proximity to certain nerves in your face, which can cause exactly the symptoms as you describe (I had many of them myself, pain in the cheek/jaw upon noise exposure, sometimes extending through the rest of my face).

The muscle is called the tensor tympani and it can irritate the trigeminal nerve, which runs through a large part of the lower half of your face. Try a search on 'tonic tensor tympani syndrome' for more information. Sometimes the muscle can even cause your eardrum to pop and spasm. It makes sense that alcohol reduces the symptoms as alcohol acts as a muscle relaxant and reduces nerve activity. 

When hyperacusis is treated these symptoms go down as well. It should be noted that these symptoms are often exacerbated by an exaggerated subconscious startle reflex to sound, and therefor can be (partially) psychosomatic, so any misophonia/phonofobia (dislike or fear or sound) can contribute to your symptoms. If you subconsciously clench your jaw this will also make the symptoms worse. Hope this helps.



The onset of my symptoms was October 2016. I was noticing discomfort in restaurants 2 years prior to that I was diagnosed with hyperacusis in Boston Mass (April 17). The Doctor offered me no strategies for dealing with this condition. She also checked for Superior Semi Circular Canal Dehiscence which she ruled out. However in her report she noted thinning of the semi circular canal. She never told me, I saw it on the report. I sought out AN AUDIOLOGIST after findiing this group. I have been using sound generators for 7 months all day everyday. I use white noise at night and I am in an office through the week that can get loud on and off throughout the day. I see some improvements. I can tolerate running water now. I don’t cringe as much as I used to with plates and silverware hitting each other. I also just recently had my bite adjusted as I had a very bad malocclusion. That was just 3 days ago. I think the symptom I hate most is the aural fullness particularly when it is magnified by sounds and anxiety. I know that 17 months isn’t long compared to many people on this board but I am getting impatient and considering having my tendons cut (stapedius and tensor tympani. I know it is a last resort but I have spoken with folks on the Tensor Tympanic message board and some have had success. I have a appt to see a doctor in Boston that performs this surgery. I know there is risk involved, as far as making the hyperacusis worse. This doctor claims he has never had a patient have their H get worse. The journey continues.

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Mona Ghirin
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EDogg

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Posts: 167
Reply with quote  #9 
Hi Mona,

I would be a bit leery of any surgeon who says they have not had any complications. Even on this site, there are the stories of folks who have undergone this procedure and did not gain the relief they anticipated. Some have been made worse. These delicate muscles function to dampen the sounds entering the ears. For those with sound sensitivity, already, this does not seem intuitively like a viable option. It may help the myoclonus (or not) yet could make your hyperacusis worse. That said, for some select and fortunate folk, it apparently helps. Honestly though, this approach should be a last resort for someone who has not experienced any improvements with more conservative measures. Once you’ve had it cut, there is no going back. Thing is, you have experienced improvement. Hold on to that and keep doing your sound therapy if it’s working. This can/often takes a long long time to heal for some of us, but the body has an amazing inherent drive to repair and heal itself. Hold on to the success and let go of the setbacks. You are making some progress. If it helps, have your LDLs reassessed. Hang in there Mona.

EDogg
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Ghirin11

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Posts: 17
Reply with quote  #10 
Quote:
Originally Posted by EDogg
Hi Mona,

I would be a bit leery of any surgeon who says they have not had any complications. Even on this site, there are the stories of folks who have undergone this procedure and did not gain the relief they anticipated. Some have been made worse. These delicate muscles function to dampen the sounds entering the ears. For those with sound sensitivity, already, this does not seem intuitively like a viable option. It may help the myoclonus (or not) yet could make your hyperacusis worse. That said, for some select and fortunate folk, it apparently helps. Honestly though, this approach should be a last resort for someone who has not experienced any improvements with more conservative measures. Once you’ve had it cut, there is no going back. Thing is, you have experienced improvement. Hold on to that and keep doing your sound therapy if it’s working. This can/often takes a long long time to heal for some of us, but the body has an amazing inherent drive to repair and heal itself. Hold on to the success and let go of the setbacks. You are making some progress. If it helps, have your LDLs reassessed. Hang in there Mona.

EDogg


Thank you for words of support Dogg. It really helps. . The logical part of brain knows that surgery is not the answer. I just get discouraged like I know everybody else does. The other issue is that I have some messed vertebrae’s in my neck which makes me wonder if it will ever really improve. I do massage and some yoga. I even bought a neck collar that gently stretches the neck with the use of air. My symptoms definitely get worse in stressful situations, particularly riding in a car. I have a phobia of crashing. I am not doing the driving as I have lost my confidence and we are currently in a very busy city for me and my husbands work. My startle reflex is on alert, the minute I get in a car. It was that way in my home state of Maine to. Wish I could figure out how to desensitize that!!! Thanks again, don’t know what I would do without folks like you!!!
Mona

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Mona Ghirin
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Aplomado

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Reply with quote  #11 
Sound therapy got rid of my aural fullness.  Your results may vary.
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smuth

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Reply with quote  #12 
Hi

I have exactly the same burning sensation down my face and tounge. It is hyperacusis one of many symtoms, it will get better or go away with sound treatment.
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