Stapedial Myoclonus Triggered by Voice

Discussion in 'Support' started by Jokko, Jun 12, 2015.

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    1. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      There is someone that had the surgery to solve the myoclonus in the ears? Why I have a special myoclonus it's like a vibrations of the eardrum when I speak. The cause is probably an accident with the headphones!
       
    2. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Myoclonus: Myo = muscle, clonus = spasm. TTTS is a myoclonus. Its a spasming muscle, the Tensor Tympani (hence Tonic Tensor Tympani Syndrome). The Stapedius muscle also spasms in similar circumstances but due to its different function and attachment it creates somewhat different symptoms. Collectively the condition is called middle-ear myoclonus. There exists surgical options for intractable cases. Google from there.
       
      • Helpful Helpful x 1
    3. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      @PaulBe thanks for your reponse. What's about farmacological approach there is a drug that work for this condition maybe a muscle relaxant?
       
    4. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
    5. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
    6. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      I would give it some time. It's very early yet for you to try anything drastic. It could just go away on its own but maybe try some of the things in the link I gave. Hope things get better man.
       
      • Agree Agree x 1
    7. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      Yes of course there are moments that go away for yourself for 2-3 hours that's amazing but after return
       
      • Creative Creative x 1
    8. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Its not easy to find much information about the surgical cutting options, and even harder to find decent follow-up papers, which I think is what we most need to see. There are some threads here worth finding that cover some of this information, but overall it doesn't get the attention you'd expect if it was really the cure-all some tout it as. it comes with risks obviously. There is another treatment called Oval Window re-enforcement that someone has been trying in the US. He appeared to have some success with a small group of patients (that was more to do with hyperacusis specifically) but again, waiting on follow-up over time. I believe he was trying to find a larger patient cohort to work with but I've heard no more lately. It covered in a thread here somewhere.
       
      • Agree Agree x 1
    9. Mad maggot
      Breezy

      Mad maggot Member

      Location:
      New zealand
      Tinnitus Since:
      12/2008
      Cause of Tinnitus:
      Unknown
      Do you think there is a possibility this could be SCDS? That reacts to your own voice among other things.
       
    10. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      @cullenbohannon tts isn't a serious sindrome it's a bit annoyng sindrome that's why many ENTs don't want perform a irreversible surgery to treat it, but maybe there are alternative to treat it. With a farmacological approach or maybe will heal over the time for yourself

      What about oval reinforcement it's usefull too for tts?
       
    11. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      It involves taking a pad of fat and placing it around the oval window where it interfaces with the stapes. I think it works like an insulator so it doesn't address the cause but it may provide symptomatic relief, but finding someone able to properly assess you for it is but the first challenge. I only know of a small series of patients from one Clinic and I know of no long-term follow-up.

      Sorry Jokko, I should have said: this is about treating hyperacusis primarily. Now, whether TTTS is being driven by the presence of hyperacusis, then I don't know how helpful it would be. If you could control/reduce H then would TTTS ultimately settle itself? I don't know. I saw Myriam Westcott, who CullenB references above and her practice is very directed toward TTTS/Middle Ear Myoclonus management and they were quite focused on autonomic retraining (using TRT priniciples). I guess a lot depends on whether you believe MEM causes (or exacerbates) hyperacusis or H causes MEM. So far I am convinced by neither view. I know of at least one individual here (in Australia) who claimed a cure from Stapedial tenotomy for his hyperacusis, and a large swathe of his tinnitus. Mind you he had to go to America because Seeing an ENT for ear symptoms in Australia is about as useful as seeing an Obstetrician for a sore foot.
       
    12. ridgew

      ridgew Member

      Tinnitus Since:
      2005->2012
      Cause of Tinnitus:
      Acoustic trauma
      Guys with myoclonus, do you have a feeling of pressure in ears as well or it's just feeling of trembling when muscle vibrates?
       
    13. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      @PaulBe I don't have hyperacusis and only mild hearing loss. The main symptom is that main eardrum vibrating a littelbit when a sound impact with it for this reason I think no one will perform a surgery (tenetomy) on my ears even in USA. I think my condition is permanent!

      Only a trembling no pressure

      IT'S very annoyng this simptom!! Helppppppppppp
       
    14. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I had random ear muscle spasms for a year, they are gone, however I still have my left ear fluttering around with any sudden noise, even the click of a light switch makes it jump, it really hurts. I thought it was just part of H, maybe not. I talk with a very low smooth voice as this can cause the situation to get out of control, or I just refrain from speaking all together.
       
    15. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      What an affliction this is...not only does it rob you of your quiet, but it also turns you into a bloody hermit.
       
      • Agree Agree x 1
    16. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      @Telis This affliction is very hard to have, I'm looking for something that can heal me I can't live with this spasmi it's scary
       
    17. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Mine is similar to yours Jokko. Its in my left. I'm not sure its actually the eardrum, but I too can move my Eustachian tube which gives off a sickly, almost bony-sounding crunch. Sound becomes impossible many days when this is prevalent, particularly short sharp, high sounds like a light switch or even the press of computer keys. Some papers I've seen associate it with stapedial myoclonus, others just call it part of hyperacusis (which itself is a symptom, not a diagnosis as many seem to think).
       
    18. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I found stretching stopped mine from randomly going off. Just happens when I hear sound now, part of my H I guess.
       
    19. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      Funny how some say I can live with anything but T or anything but H or anything but myoclonus...I feel genuinely sorry for people who have all 3 in severe form, as I find it hard to live with just 1 thing, my T.
       
    20. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      @dan I have 3 symptom, crackling sound in the ears myoclonus in left ears duo acoustick shock and small tinnitus
       
    21. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      I meant 3 in severe form, but yes I also have crackling sound, I had it since I was born, its not so bad because it only crackles when I swallow.
       
    22. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma from airplane descent, noise exposure? ETD? TMJD?
      I thought cracking when you swallow was normal--tells you that your Eustachian tube is open? My left one doesn't crack right now when swallowing. That's the one that gave me trouble on airplanes.
       
    23. canyonero

      canyonero Member

      Location:
      Eastern US
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Acoustic Trauma?
      My ear rings like a subwoofer when I talk sometimes. Stapedial Myoclonus is not as bad as T bud it does get annoying sometimes.
       
      • Agree Agree x 2
    24. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      I will fix this crackling sound with an expert ENT in eustachian tube
       
    25. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Drink more water, its just mucus build up sticking to the tubes,no biggie. If it doesn't go away it's probably normal, I've had it all my life like most people.
       
    26. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      I never had this problem it begins after the start of tinnitus 1 week after
       
    27. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Try a ton of water, see what happens. Are you in a dry climate ?
       
    28. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      no cure for crackling eustachian tubes. Its too risky to operate on I think
       
    29. Jokko
      Amazed

      Jokko Member

      Tinnitus Since:
      01/2015
      yes they can cure that with tuboplasty or laser surgery but only specialized ENTs not every ENTs is able to do something like this...

      In europe there is only one ENT that is able to repair that and is very expensive is not for all, I'm lucky why I have the assurance and i pay only the 20% ot the treatment...

      anyway all is risky too drive a car is risky you can die easily or with a motorbike is very riski

      Yes is warm where I live
       
    30. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      1 ENT in all of Europe? whoa...
       

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