Stapedial Myoclonus Triggered by Voice

@dan yes he is specialized in eustachian tube and is ENTs surgery specialist only in this field . in USA there are 3 o 4 ENTs with the same specialization

 

hmm no wonder I thought there was no cure or treatment for this, its so super rare...I stand corrected.

 

there is always a cure @dan exept tinnitus

 

If I focus very hard I can stop the twitching, however it usually starts up again when I redirect my attention.

 

my problem isn't psychological is a fisical problem...is trauma of the two small muscle...

 

Lol Physical, for me it physical half, half mental. If I concentrate hard for a few minutes it dies down, then it is actually stays calm for a few hours before starting up again.

 

Yes is phisical why I had an acoustic shock in my left ear...before I don't had this problem

 

In a way you are sort of demonstrating how TRT principles supposedly apply to Middle ear myoclonus. Theoretically it should be possible to retrain involuntary muscles to respond/not respond to stimulus based on what the brain accepts that stimulus as representing. At least that's what "they" say. Dineen Westcott here in Australia have a lot of eggs in this basket. Hasn't helped me much.

 

I was laughing at your spelling of "Physical" not disputing that you and most people have no control over it.

 

I'm curious about this guy. Are you saying stapedial tenotomy (cutting of the stapedius) is what he claims instantly cured his ''hyperacusis''? You know him in person? Was his ''hyperacusis'' the spasm itself, the kind of thing Jastreboff and chat hyperacusis would get their knickers in a twist and half say it's misophonia, the other half say it's neither misophonia nor hyperacusis?

Did he go to the chicago dizziness and vertigo center?

I was speaking to a guy who the past decade had myoclonus and he was very happy about it, BUT he did not have hyperacusis he claims, so that has to be beared in mind. He was from the same forum where Astrid, from chat hyperacusis, has extensively complained about how her stapedial and tensor tympani cuts worsened her ''hyperacusis'' tenfold.

 

Unfortunately I don't know him, and only came to hear of him through a work colleague who knew him. I'm not there anymore and have no more contact with her. What she told me was that he felt that he had been cured and he had been diagnosed (for what its worth) with hyperacusis (she knew the word and had heard it from him). I don't know if his relief came from resolving hyperacusis itself or from resolving physical symptoms of TTTS. From what I was able to glean, it sounded like a bit of both.

Astrid. yeah, I wonder what was really going on with her. That's the whole problem. No research, no diagnostics, no surgical criteria...a crap-shoot, as you once observed. There will be no research in this field on any scale until TRT is pushed aside as not being the panacea everyone wants it to be. I don't dismiss it out of hand, but I object to it as retarding research into other causes and treatments because its just so easy to slough someone off to an Audiologist, who gets to benefit from the whole surrounding business model that TRT has become.

 

Well I contacted Lib a week ago, and she seems convinced my TTTS-like not-classical hyperacusis pain spasm whathefuckever is curable. But I need to keep reading and I have my doubts, because even though she talks about sound sensitivity it doesn't seem to be as present for her as it is for me in all its mechanical, precise, immediate and repetitive glory. I also talked with ornitoring and joem, they also put a bigger emphasis on flutters than on this precise startle thump and/or startle pain of mine, but both Joem and Lib are increasingly convinced that I have what they had, but I need to read them thoroughly to understand why exactly they weren't talking about the drastic world I live in, one of complete levelled out sound or silence in order to concentrate. For instance, Joe says

''actually the statement about me not having thumps is not really accurate. I did have thumps, but everyone who has myoclonus / TTS describes them differently. Some describe them as thumps, others as clicks, others as snaps... it is all just semantics.

What you describe in this statement: "My pain is a dull pain which I associate with, or comes in parallel with, a thumpish sort of sound where the permanent low frequency vibration sound I have is incremented for the duration of the sound.", would be how I recalled explaining it as well, and again sounds to me to be very descriptive and accurate to myoclonus / TTS.

If I recall correctly, sounds in general, of all types, high pitch, low pitch affected my ears. Every time you provide more information to me, the more and more I believe you have exactly what I have. But I ultimately respect your decision to investigate as much as possible, because you have to live in your body. I know for me, it was an easy decision, because the hell I suffered, any decision to try something was better than hell on earth.''​

 

Anyone tried botox for this condition?

Can it lower t, if it is fixed? I have it for 2 years, i can make that cracking sound whenever I want, gor 100 times in minute, without swallow, without moving a jav. Just moving something (that muscle in middle ear I suppose)

 

Its been done, and it works.

 

For how long it works? Can it be repeated many times? And is it invasive, dose it hurt, side effects..?

Tnx for info

 

It was done in China, the example I know of. It lasted three months, as you would expect of botox. It was applied to the Stapedius muscle with a micro-compress (the tensor tympani is large enough to take an injection but the stapedius isn't). The patient already had a ruptured eardrum so access wasn't much of an issue, but otherwise you would have to open the tympanic membrane and go in through there, so yes, it is invasive. It supposedly rendered the patient symptom free for three months give or take a day. I would view it as an excellent diagnostic procedure in preparation for the more definitive approach of cutting the muscle/tendon if that were necessary as I think opening and closing the Tympanic membrane periodically would create additional problems over time.

 

@Jokko, @canyonero this trembling is it painful? a dull sort of pain you may only realize is actually painful when you have it all the time? I have high pitched tinnitus and low rumbling tinnitus all the time, but when I get this rumbling dull pain that may be TTTS, it comes with a thudish sound all throughout where the low rumbling sound seems to get incremented. Is it like this for you? I get it with every sound startle, including light switches, mouse clicks, everything at the start of the sound. Have you tried muscle relaxants or TRT?

 

Yes, Mouse clicks, and computer keys....of all the stupid things....

 

@Jokko Do you know his name?