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Reply with quote  #1 

Dear All!

 

I am new at this forum. I am a male, 35 years old from Norway.

 

I have noticed that many on this forum have symptoms that are similar to mine. I have some kind of fluttering sensation, or clacking/vibrations in the ear when being exposed to "sharp sounds", e.g. kitchen sounds, metal sounds, but also when hearing voices; both my own voice, but also other people’s voices. The last part is the most annoying. I have these symptoms mainly in my left ear.

 

I got this very sudden, the day after I visited a cinema show (the decibel level at this performance was very high). This was in august 05.

 

My condition is worse in the morning. However, it improves a bit during the day, especially after being exposed to background sounds. Sound enrichment is in general positive. I do not have problems being outside, hearing traffic noise etc. However, going to a cinema, concert or disco is not an option.

 

I also have tinnitus on both ears (but this I can manage).

 

The tolerance for sound has been reduced a bit since August 05. This situation represents a lot of discomfort for me, and I am focusing quite a lot on this condition.

I have visited specialists (ENTs) who state that there probable is a damage in the inner ear, and that no treatment is available. I do not have much faith to this conclusion. I am currently waiting for an appointment at the auditory center at the local hospital. (But I will have to wait for another 5 months
L ).

 

Some questions:

Does anyone have some good advice on how to manage this condition?

I believe that I have some muscular spasms in the middle ear (tensor tympani, stapedius, or the muscles related to the E-tube). What tests could be performed to diagnose muscular spasms in the middle ear? Is it possible to diagnose which muscle that actually contracts? Does anyone have experience with such tests? 

Does anyone have experience with TRT treatment because of this condition? Can TRT help increasing the tolerance level? 

 

Are there any statistics available concerning results of surgeries because of this condition (cutting the muscles)?

Thank you very much.

 

Best wishes.

 

Eric

Ankie

Registered: 10/18/05
Posts: 17
Reply with quote  #2 

Hi Eric,

I have hyperacusis for year now. I have these spasms too, since august 2005. It reacted on everything, just as you described, but it's getting better i don't have them as much as a three monts ago. In the morning it's most there (for a couple of minutes) but since i sleep with a soft music on the background it's better.


__________________
Ankie Selles-Winters


Reply with quote  #3 

Hello Ankie, and thank you for your advice. I will try applying some sound enrichment also during the night. Hope this will improve my condition. Have you been through a TRT programme? Have you also tried other sources of sound enrichment during the night, e.g. white/pink noise, nature sounds etc? I believe it is possible to by devices that generates for example nature sounds.

 

Best regards, Eric

jambo

Registered: 01/11/06
Posts: 31
Reply with quote  #4 

Hei Eric. Jeg har sendt en PM på norsk til deg, men poster her på engelsk slik at andre som har bruk for det også kan lese.

 

I have the same symptoms you describe. I too had them only in the left ear, but now recently I have the same symptoms only much much weaker in the right ear as well. I also have some tinnitus, but as you said it is manageable. I don't know the cause of my symptoms, since I've had them once (but only the crackling to loud music) when I played in a brass band and then they went away, but now they're back... I think sometime during 2004 I got slight crackling noises in my ear when exposed to loud music for prolonged periods of time. This was not bothering at the time, and the cause was also unknown; it could have been a loud rifle shot I heard half a meter from my head, but it could also have been too loud music on my mp3-player. What I do know is that after a movie I went to during late autumn 2004, it suddenly got much worse, and then I had all the other symptoms you describe as well. Metallic sounds, dinner plates, kitchen noises, voices... they all triggered something in my ear. I've described it closer here (in several posts): http://www.websitetoolbox.com/tool/post/danmalcore/vpost?id=851438

 

My symptoms have become weaker, and then stronger. At the moment I'm getting better I think. But the symptoms never disappear totally. It really puts an effective stop to social gatherings, disco, cinema etc. because it would just be too uncomfortable. I'm considering surgery at the moment, hopefully that would put a stop to it all, but who knows. It scares me that doctors know so little about this, yet there are a lot of people with this condition. I see new people on this forum with these symptoms all the time, just imagine all of those who have this and aren't on this forum!

lib

Registered: 04/27/05
Posts: 272
Reply with quote  #5 

eric,

there are not any specific tests for this, but a good dr can usually figure this out.

please feel free to look up my posts, there is a lot of info in them, and i can answer questions as well....also...as always, anyone that would like to email me on this is welcome to.

lib

LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #6 

Hi Everybody, ((( Smiles )))

 

I'm hopeing Marsha will answer my question on the thread I posted..

 

I had the kind in both ears that responded to outer sounds immediately on hearing the sounds.. Even if it was or may have been split second but it seemed immediate to the sounds.

 

I would describe it that way... Because it was felt about immediately after or when hearing the sounds that caused my ears problems..

 

And sounds were heard super sonic loud back then.. Even soft sounds were not heard normal.. But loud and sharp and slicing and painfull cutting and an ear cramping not like a fluttering back then..

 

When It felt like a lite touch.. That could be a fluttering... Thats how I described it " lite touch " when it was leaving or getting way better by late Feb 04...

 

I just don't know.. But it didn't come and go for me.. It was consistent and better in degress as with my sound tolerance was getting better but I still couldn't get past them and was stuck untill I spoke with Dr Vernon and did what he told me to do back then... ..

 

I would descibe it that way  ... a physical assault in my ear on my drums but when it came to very soft sounds like non sounds to others like..

 

Turning the handle of a doorknob or sliding a closet door very slowly.. Till it reacted more to more higher decible level sounds over time and less reactive to non like decibles of sounds..

 

Hard to explain.. But in my post of October 03 I explained how it could feel like being kicked or punched in the eardrum to voices on higher Db's of sound...

 

For me that was at a higher decible of sound... Voices or talking...

 

So it reacted more violently..

 

So mine.. Didn't come or go.. It just faded away or got improved to certain sounds over the year..  Mostly the end of the year...

 

It was allways there but in different degress of progress in the db's of sounds it took for it to react .. With.. My hyperacusis ????

 

It was subtle improvement still was pretty bad toward the end of the year...

 

But the big event of getting rid of them finally happened with voice therapy..

 

I couldn't get passed it.. Get rid of them... It took awhile but finally... It got better...

 

Marsha should have some knowledge about this in the way that she has seen this symptom I'm sure before in her patients..

 

I guess some with hyperacusis.. Others with.. I'm not sure what...

 

But was mine related to my severe hyperacusis.. Loudness disorder or something else and triggered by my hyperacusis or loudness disorder ????

 

I'm not sure.. I did have a thudding muscle ear problem before I noticed my H as H... I had tinnitus and problems with my ears then of course I took that Celfaclor and got sick then and my ears started thudding...

 

But this spasming situation was not the 24/7 thudding I had then that was not sound stimulated like what I finally developed... Except maybe sound stimulated by that on high double window fan running all night ????

 

It thudded 24 /7 like a fan running constantly in my ears but it didn't sound exactly like the fan.. My ears where more thudding and the fan sounded more...

 

It's so hard to explain it was so odd for that to happen...

 

But on the crackling.. I think there are two different crackling things..

 

How I know this is because I do have a problem with my right joint in my jaw and my chiropractor did this manuver and I noticed the jaw crackling more for awhile after that..

 

And I said to him because he thought the crackling was my jaw that I heared in my ears.. 

 

But when when I was streeching my jaw I noticed I could hear that crunching like snow in my ear but it was different then the crackling that I could make happen in both ears that was more like clicking crackling and louder...

 

By not moveing my jaw at all... I said no.. I think it's different.. He believed I could make that sound heard in both ears by not moveing anything and just doing it and he said it was a muscle..

 

But I don't think it's the same one I can hear in lower volume by opening my jaw real wide in my right ear..

 

Not the same one I hear with swallowing.. It sounds different...

 

Jaw crunching sound on the right  and ear like crackling clicking sounds are in both ears and sound louder and different...

 

Anyone with thoughts on this subject...     


__________________
Take Care

Lynn


Reply with quote  #7 

Hello Lib, Lynn, Jambo, Anki and everybody,

 

I have found an article by J. Hazell that says something about diagnosis of contractions of middle ear muscles. Reference is made to the websites http://www.tinnitus.org/home/frame/THC1.htm, and the article “Things that go bump in the night”. In this article impedance audiometry is mentioned as a method for measuring increased contractions of the tensor tympani muscle.  It is also stated that this test can diagnose if there is a Eustachian blockage; "a soft ear plug placed in the outer ear connects with a device which measure pressure behind eardrum".

 

When I visited an ENT, he tested the pressure in the middle-ear. This turned out to be OK. But is this "pressure test" the same as an "impedance audiometry" test?

 

I have furthermore been told that there is something called a "stapedius reflex test" for testing the stapedius muscle.  

 

In case surgery is an option, I think it is necessary to first perform reliable tests, identifying if and which muscles that contracts.  

 

Does anyone have experience with the above mentioned tests? Can these tests be trusted?

 

It would be unfortunate if surgery was performed, and it turned out that the muscles that was cut actually wasn’t the source of the problem.

 

But anyway, I consider trying TRT treatment before surgery. I have got signals from a TRT professional that muscle contractions (tensor tympani) is very common with tinnitus, and that this improves as TRT progresses.

 

But will TRT treatment also reduce muscular spasms of the stapedius muscle, or muscular spasms known as paletal myoclonus? Does anyone have any thoughts/experience with that?

lib

Registered: 04/27/05
Posts: 272
Reply with quote  #8 

eric....i had these tests, they were normal....there are no sure fire tests to prove it for sure. hate to be the one to say it....but thats is the truth. the drs have to catch the muscle in the act and that is not easy....but a good dr will have a real good guess at it...

lib



Reply with quote  #9 

Hello Lib, thanks for your feedback. If it is the case that there are no reliable tests to diagnose if and which muscle that actually contracts, isn't it a "risky business" moving in the direction of a surgery? My experience is that there are few ENTs who are skilled within this area. I wouldn't take the chance of letting the ENTs whom I have visited start guessing, that's for sure! Is surgery then actually a process of trial and error? It would have been interesting to have some statistics concerning the results of surgery based on the above mentioned symptoms. In Norway there are for sure no statistics. But it should be in the US. Isn't there a organization of ENTs (surgeons) that could say something about this? By the way, I am glad that surgery have turned out well for you. Best regards, Eric.

 

Hello Lynn, thank you for your thoughts regarding this issue. I understand that also you have had muscular spasms in the middle ear, and that your condition has improved. I am glad that this turned out well for you. How long did it take for you to improve? What do you think was the main reason for improving? You mentioned "voice therapy"? Could you kindly explain the contents of this therapy? As you I hope that Mrs Marsha Johnsen will give us some feedback regarding TRT treatment for this kind of problems. Thank you. Best regards, Eric.

LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #10 

Hi Eric, ((( Smiles )))

 

I had the Stapedial Reflex test.. It showed no response and I posted what the test looked like for me on Astrids thread...

 

This was way before I had the spasms to outer sounds.. Back then.. The first symptom I ever had of a muscle ear problem was thudding and inside the ear rumbling...

 

I read the articule long ago of what you have posted and for me.. It doesn't explain it all.. I didn't have this with just tinnitus and I had terrible tinnitus before ..

 

I wrote about my tinnitus the progression of it and how it was for me on this board..

 

For me.. The ear spasms were more then just pain or feeling like my eardrum was being wacked hard from sounds.. It was the immediate spasming on softer sounds as well..

 

Metal on Metal, dishes, silverware, newspaper turing pages ect....

 

I had this... what I would consider to be a symptom of hyperacusis.. Or at least stired up by the hyperacusis loudness disorder but noticed it at the same time as I had hyperacusis...

 

So for me.. I feel that doesn't explain my symptoms or why this happened to me... I've felt stress in my life and my ears never spasmed inside before.. Something went wrong...

 

Not just from my tinnitus.. I don't think it was just from that ...

 

So I want to know how many people with hyperacusis disorder get the tensor or stapedial spasms and have them get better with their hyperacusis...

 

I want statistics .... I want it broken down.. Who gets them.. What catagory do they seem to fit in.. What is the end results..

 

There is more to be written on this.. It needs to be updated and it hasen't been.. Where is the research on us..  The ones that have this problem...

 

I want hard cold facts about us.. And who we are and what we go thru....

 

On both sets of ear spasms.. The stapedial and the tensor.. And haveing them both together... One or the other... 

 

Weither a person has classic hyperacusis... what a person symptoms are because sometimes.. symptom are subtle and hard to diagnoise so that's why it should go based on what symptoms we do have or no longer have...    

 

That goes with our spasms... I was reading this site called The Free Dictionary and it said..

 

Tensor Muscle of Tympanic Membrane ..

 

A muscle with orgin from the Eustachain Tube , with insertion into the handle of the malleus, with nerve supply from the branches of the trigenimal nerve thru the Otic Ganglion , whose action draws the handle of the Malleus Medialward and tenses the Tympanic Membrane...

----------------------------------------------------------------------

 

Now I still have this thundering booming thing.... And crackling...  It's all internal now.. From the E-Tube ? Part of the problem...The root of the problem ????

 

I feel the tensor or stapedial is a nerve problem of some sort.. Weither an injury or some sort of damage or...

 

Triggered by sounds of the brain processing the sounds as too loud and being sent back to the muscle as so..

 

See.. More research needs to be done on this as that writeing on that site is just so old... Thats my opinion...

 

You can try TRT as it's a good therapy.. I didn't under go TRT myself.. But I pasted posts from Michael about this and they were good ones yet it didn't really touch on what alot of us were feeling.. Going thru ...

 

He did TRT and we were concerned about the muscle...

 

Where did I post it under.. One of my created threads..      

  

 


__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #11 

Hi Eric, ((( Smiles )))

 

I'm going to post the question you asked on the thread I created for help from Marsha....

 

Of just on the question of what her ideas may be because she is one smart lady and has been around for a long time...

 

She's seen alot of people over time and I'm sure she has done some research on this as Marsha seems to be into research alot... I know she is one busy lady but I hope in time she will have something for us...

 

I have a sore throat today.. Started yesterday so I have to take it easy..

 

But I'm going to post that... and that post form Michael who did TRT is on one of my numbered thread.. 1-2-3  4-5-6- all the way to the highest one...

 

He really tried to help us and it wasen't clear.. I don't think he had what we had.. It left more questions then answers for me...

 

He was more into the TRT and how happy he was with it and promoting it then what was going on with us... I don't think he really knew... 

 

I do believe more research needs to be done on this....

 

 


__________________
Take Care

Lynn
lib

Registered: 04/27/05
Posts: 272
Reply with quote  #12 

hi eric,

otologists or neurotoligists are much more ear drs than ents. they cut these tendons for various ear surgerys so they know exactly what the are doing. they are also more informed on myoclonus. i would find one of these type drs. the surgery is simple, not risky at all i was told by 4 top drs here in the u.s.

a really good dr should not have a hard time diagnosing this....problem is finding a really good on.

lib

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