For Those with Middle Ear Myoclonus...

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

    1. sr913

      sr913 Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      TTTS/MEM
      Does anyone have any idea how these two meds could be used for TTTS/MEM? If they affect inner ear blood flow, that sounds promising....
       
      • Good Question Good Question x 1
    2. Thericker

      Thericker Member

      Tinnitus Since:
      01/2010
      I started getting ear spasms in my right ear in early April. Like most on here, following a burp, I would get a flutter every 5 seconds or so. Sometimes as little as 4 flutters, sometimes lasting hours. Some days I would wake up with it and I wouldn’t need a trigger, just random spasms. My schedule seemed like 3 days on, 2 days off (completely spasm free even after burps). I came to this forum as it was completely new to me and having bad tinnitus in the past (don’t notice it at all anymore) in my left ear, I’m a freak when anything is happening w my ears. Anyway, I tried one round of Accupuncture, nothing changed, planned on continuing, but went to dentist who gave me a night guard and an appliance that sits on two back teeth during the day to prevent grinding. It’s been four days since I started using it and I haven’t had an episode. While I know I may be setting myself up for disappointment, if feels like it’s gone this time. Just thought this might help some if you guys want to give it a try. If my mem does return I’ll be sure to come back here and update all of you so you don’t have to trial this. And if I continue to not have the spasms I’ll come back in a few months to let you know nothing has returned. Thanks to all who post on this site as it is gotten me through some dark times in the past
       
    3. Rich1988

      Rich1988 Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Unknown
      Hi,

      I’ve recently started getting the same symptoms as described by many of you. Sometimes random thumping but mainly after a hiccup/burp. It started about 6 weeks ago at the same time I had an annoying eyelid twitch which has gone now. I was particularly tired at this time (struggle with fatigue as it is but I had been out drinking for birthdays quite a bit).

      I’m convinced it’s triggered by stress/fatigue/anxiety. I had horrible heart palpitations for over a year a few years back which started during a stressful time at work, and only really went away after a professional did all the tests and said it’s down to anxiety.

      It seems to me like this is a similar thing, I’m not very good at showing stress and emotion so my body tells me to slow down in its own annoying way.

      I don’t think it’s a coincidence that my ear plays up less on Sunday’s when I’m relaxing.

      Anyway it’s reassuring to find other people sharing their stories, so thank you for that.
       
    4. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      God, how do you tell MEM from MEM like symptoms. I am at my wits end, just trying to hold out and go to a neuro-otologist for diagnosis. I've suffered from T/H for years, but this had made me question killing myself, as sick as that sounds.

      What's worse is it's an old condition I remember from 2015 that I had off and on for a few months. Never lasted long, but came in spurts.

      But, my grandfather recently passed away and the day after I awoke to this low frequency bass like viberation. It wen't away in a few minutes. I then stupidly tried new earplugs called Decibulz which you boil and mold to the outer ear (while the normal 3 tier prong part is in your ear canal). When I was pushing into my ear trying to mold it and get a good fit, I noticed a slight irritation in my ear and I pulled it out, BOOM this VIBERATING type vrooom, vrooom, vrooom sensation hit me like a truck. Just like the old condition from years past but way more intense. This was when it's a 10/10 and becomes a continous type of loud viberating echo. Like 40hz low bass just vroooming in the ear. It calmed down hours later to a more vrooom, pause, vroom and it's been almost 24/7 since. Sometimes if I stay up all night or at night it seems almost gone/lower, so I know it's not regular T as it fluctuates so widely and is more of a sensation with hearing the vibration.

      If I drive, use earplugs, mess around with ear too much rubbing, get upset, it makes the vibration go to a 10/10 where t becomes more continuous without a break. I'm also oddly being able to pick up low frequency noises more in the ear that are far off that sort of reverberate in the ear.

      I also right after my grandfather died also started getting way more muscle spasms around my body at random. 10-20 times a day at random little spurts.


      What's strange also, is that I remember about 6 months ago I was panicking over a fullness, weird new reactive T issue in my ear I got suddenly at work. Nothing similar there, but I noticed when I wen't to the store the sound of the generator beneath the cooling island sections was INSANELY loud, or vibrating way higher into my right ear. This was chalked to ETD and wen't back to normal weeks later, but makes me wonder if in fact there's some common thread.

      But unlike before, I actually tried flonase for a few weeks, antihistamines for 2 weeks, then 5 days of antihistamine/pseudoephedrine combo with no improvements so I'm terrified it isn't anything relating to ETD and is an issue of the muscles in the ear or some type of nerve damage.
       
      • Hug Hug x 1
    5. StephAtkings
      Fine

      StephAtkings Member

      Tinnitus Since:
      2003
      Hi Guys,
      It has been a while since I have been on. I just want to say from August 2018- June 2019 I was thump free. If I did a burp I would maybe get a little rumble but it would lead to nothing. My doctor managed to pick up the vibrations by doing a long term typanometry test so he is more than happy to do the surgery. He cannot guarantee the surgery will work its literally a 50/50 chance but its always good to have it as a last resort. When I was officially diagnosed things did get better I was so relieved and I did not feel crazy anymore. I was able to move on and stop looking for answers on sites. Unfortunately my myoclonus is back in both ears at the moment and the trigger is yawning, stretching and burps ! It has not started on its own yet but that will probably come. I am not as devastated as I would normally be because this time I know its not forever and it will get better. Do not get me wrong when my attacks last longer than 12 hours I do start to feel really anxious but it ALWAYS passes. In a whole I feel like I have improved, I need to accept that its apart of me. If things get really bad I will opt for surgery but at the moment I would rather ride it out.
       
    6. KikG

      KikG Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Hello all! I have been following a lot of these posts for a long time but have only now signed up to post. I also suffer from ear thumping brought on by burps/hiccups/yawns/stretches. I have been dealing with this for 6 years. Mine also comes and goes, sometimes going away for over a year. Lately it is back and seems to be happening at night when I can't control my stretching/yawning. My question is has anyone seen a chiropractor for this issue? Also wondering if anyone has used ear plugs to help alleviate the problem. Any tricks for sleeping without triggering it? This has really been getting to me lately, and the thought of dealing with it forever is daunting. Thanks in advance for any responses!
       
    7. AmyNZ

      AmyNZ Member

      Tinnitus Since:
      March 2019
      Cause of Tinnitus:
      Unknown
      I've been having this problem since the beginning of March 2019. It started off as the random thumping in my left ear for about 12 hours at a time then nothing for a few days and now it is just randomly in the middle of the night, most nights - sometimes for only a few minutes, other times for hours on end. I haven't had a proper sleep since I've had it. Listening to brown/white noise helps drown out the sound of the thumping a little bit. Sometimes it happens in the day but only a few rapid thumps after I hiccup or burp. Nothing else in particular seems to trigger it. Orphenadrine Citrate pills (prescribed muscle relaxer from my doctor) help but they make me feel so wasted the entire next day so I try not to take them.

      Been to one ENT specialist, and going to another next week for a second opinion. Unfortunately the thumping isn't there when I have these appointments so the specialist is unable to see it happening in my ear. My right ear has recently started having the sounds too, but my left ear is the main problem. It seems surgery is a hit and miss but at this stage I'm willing to try it. I have quite sensitive hearing as it so I'm a bit worried how loud things will be if I have the surgery.

      It's so unfortunate we all have such a rare condition and that so little is known about it and there is no guaranteed cure.
       
      • Hug Hug x 1
    8. Jdp1

      Jdp1 Member

      Tinnitus Since:
      11/17
      Cause of Tinnitus:
      Objective
      This is my story. I’m uploading it to purely help others. I have slowly and systematically come to the following conclusions. (I have doctors in the family, but have attempted to solve this for myself, after a huge amount of mental input). I have separate degrees in economics and computer science (NOT IN MEDICINE), a very high IQ and a desire to help others. I have spoken independently to ENT doctors & surgeons, neurologists, dentists & otoneurologists. I have found that this falls unfortunately squarely in the intersection of the above areas and so no professional has a great grasp of the specific issue. It is so rare, you will struggle to find conclusive literature anywhere on the net. Please note these are my findings and I will take no responsibility for this opinion and in no way take this as Gospel... However, know that TTTS or MEM is a multi faceted error/problem- and that’s why it’s so rare- i.e, there has to be multiple simultaneous malfunctions of the human anatomy to trigger it.

      First, the hearing threshold must be lowered. This usually comes from a historical injury - very loud sounds, falling asleep with earphones in or generalized long-term disturbances.

      Two, it requires systematic body stress. Under stress, muscles in the body will fasciculate, twitch or contract with certain non-wasting signatures; the ear muscles are not immune to this.

      Third, there is a jaw malfunction biomechanic component to this; which causes pressure on and around sensitive areas of the ear muscles (Tensor Tympani and Stapedius).

      Lastly, there is normally a trigger - it varies from blood pressure changes to alcohol. A common trigger time is early in the morning / on awakening - this is a because the muscles are no longer in a relaxed state and become hypersensitive as the body changes mode. Early evening is another likely time- again, material changes in blood pressure - circadian rhythm? Vital to note, sounds generated are not dependent or correlated on or with heart/ pulse. If your flutter is timed with your pulse, you are in the wrong group and likely have a different kind of tinnitus.

      Lastly, Alcohol, suggests weakening ability to control hearing threshold with neurological markings.

      The “easiest” trigger to remove is stress. People try to relax and then stress that they can still hear the fluttering in the ear. Stress, is a poorly understood phenomenon and the body cannot command no stress by thinking in a relaxed state for a short period of time. It requires a lifestyle approach and also with the understanding that TTTS isn’t damaging to the ears (even if it appears to be an extremely worrying, loud and annoying) and will in time in all likelihood.

      Stay positive
      J
       
      • Like Like x 1
    9. dieslgrl

      dieslgrl Member

      Location:
      Pennsylvania
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Unknown
      I'm not sure about your condition as compared to mine as I have a constant but intermittent clicking in my left ear. This has been going on for three months with only about two days of almost no clicks in that time. The only things I have tried are both meds you list here (except it's diazapem and not clonazapem). When I take as much as the doctor prescribes, I do have relief for about half of the following day. I feel the diazapem might work better? I'm not really sure yet if one is more effective than the other.
      When I take less (bc it makes me feel like a slug) then the clicks come back with a vengeance. If you take the medication, do it exactly as prescribed. Best of luck. I'll be looking at surgery next year. Follow up in six months.
       
    10. dieslgrl

      dieslgrl Member

      Location:
      Pennsylvania
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Unknown
      Yes, I have to take them everyday for relief that night and the following day. They help but true, nobody should have to take them daily. I fear I'll lose my mind if I don't.
       
    11. dieslgrl

      dieslgrl Member

      Location:
      Pennsylvania
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Unknown
      Have you ever tried the Widex Tinnitus app? I really like the forest sounds as there are crackling noises that cover my clicks a tiny bit. I never found anything more consistent to mask it. I will try again based on your recommendations though! Thanks and best of luck!
       
    12. dieslgrl

      dieslgrl Member

      Location:
      Pennsylvania
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Unknown
      Where did everybody go? Did everyone suddenly get better? Geez I hope so!
       

Share This Page

Loading...