For Those with Middle Ear Myoclonus...

Discussion in 'Support' started by Chelles, Jun 28, 2016.

    1. Chelles

      Chelles Member Benefactor

      Tinnitus Since:
      Have you found relief for this horrible condition? Mine has been going on for almost 2 years it got better for a few weeks and now it's back full force! I'm thinking of going with the surgery option but I have been reading conflicting feedback about it here. For those of us with MEM how do you cope?
    2. OPlax

      OPlax Member

      Tinnitus Since:
      Cause of Tinnitus:
      Hi there!

      My MEM/TTS are heavy spasms that I feel in my right ear. I feel AND hear it. I know your pain, it's a living hell. I tried Magnesuim and calcium doses but they did not help me. My MEM/TTS rarely happens through the day, it mostly occurs when I wake up from sleeping every morning.

      mine typically lasts between 20 minutes to an hour. The only relief I have found was too put in ear phones and listen to music or something at a moderate volume.

      It's a living hell and thinking about getting Botox injections or surgery. Let me know if you had this procedures and if it helped you at all. Thanks -OPlax
    3. Hdun97

      Hdun97 Member

      Tinnitus Since:
      Cause of Tinnitus:
      Suspected tensor tympani myoclonus
      Hi! I have had MEM in both ears since around Nov/Dec last year. Been through countless different specialists & ENTs and so far not a single one has really even heard of the problem, let alone suggested a solution. Mine seems to be linked to reflux problems - I feel as if there is a constant lump in my throat, and get a lot of spasms and hiccups related to that, which invariably is what sets the ears going. Whether it's to do with anxiety or posture or something else, I don't know. Probably a combination. My right ear will also just start up of its own accord with no apparent trigger. That happens pretty much every day.

      I'm currently seeing an osteopath as well as doing a course of cognitive therapy, and the severity and frequency of the spasms in my left ear have decreased dramatically. My osteopath seems to be a lot more thorough and knowledgeable than any of the ENTs I've seen, who have generally said they don't know what's wrong, there's nothing they can do, please go away. According to the osteopath it's probably a result of chronic tension in my neck, head and shoulders, as well as aggravated nerves linked to the reflux and throat issues, which is likely all just worsened by anxiety and stress. Seems as if it's something affected by a lot of different factors so I'm hoping a more holistic approach will be more successful. Might be worth checking out at least if you haven't already. I'm sort of trying everything I can before I consider the surgery!

      Apart from that all I do is try to avoid yawning, stretching or hiccupping as much as possible, keep the stress at a minimum and when the thumping does occur either meditate, deep breathing and all that, or get outside and do something to keep my mind off it. But you have my every sympathy; it really sucks, and it's nigh on impossible to ignore. Here's hoping it'll just resolve itself one day...
      • Like Like x 1
    4. April
      No Mood

      April Member

      Pacific Northwest U.S.
      Tinnitus Since:
      Cause of Tinnitus:
      possible whiplash
      I''m seeing an osteopath next week and would like to know how your treatment is going. I've been to several ENT and they don't seem to realize how debilitating this condition is. I think because I look normal they think I should just keep a 'stiff upper lip' and ignore it . . . .if only I could.
    5. innovationalist

      innovationalist Member

      Tinnitus Since:
      May 2016
      Cause of Tinnitus:
      Hi, I am new to this forum and would like to share something I've found that temporarily relieves the noise/sensation. Firstly, I have myoclonus in my right ear only. 24/7. I have had days of relief then sudden onset. I am starting a diary to analyse why. BUT I do find looking straight sharply down or sharply to the right and holding this gives temporary, gratefully, relief.
      It doesn't stop the feeling of fullness though. But when I try the eye thing, I can tuck my right ear into my pillow and hold it away long enough to go to sleep.

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