For Those with Middle Ear Myoclonus...

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

    1. Chelles
      Balanced

      Chelles Member Benefactor

      Tinnitus Since:
      04/2011
      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
      Worried

      OPlax Member

      Tinnitus Since:
      10/28/98
      Cause of Tinnitus:
      Born
      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
      Stressed

      Hdun97 Member

      Location:
      UK
      Tinnitus Since:
      12/2015
      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...
       
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    4. April
      No Mood

      April Member

      Location:
      Pacific Northwest U.S.
      Tinnitus Since:
      08/05/2008
      Cause of Tinnitus:
      possible whiplash
      @Hdun97
      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:
      Concussion
      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.
       
    6. razzy2017

      razzy2017 Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      unknown
      Greetings all,

      I just wanted to share my myoclonus story with you in case anyone can benefit from it. I went from having 'thumping' in my ear about twice a week for about 6 months to being 'thumping' free for about 6 months and counting.

      I just wanted to start by saying that I am not a doctor, nor have I had any medical training. My advice worked for me, but may not work for you, or indeed might make things worse, so please take my advice at your own risk. Also, I am going to give my account of things as I interpreted them - the biological facts may be incorrect, but they are my interpretation which formed part of my recovery process. Please don't assume that what I say is factually accurate - we are all very individual and what worked for me, may not work for you, and also, the factors that brought mine on may be completely different to the factors that bring yours on. I will say for the record though that I never write on these sites, but wanted to share my story - I remember looking through these sites a year ago in the hope of finding advice for dealing with myoclonus and the feelings that I had, so if my advice is able to help at least one person, it will be worth it.

      So, the thumping started in my right ear about 1 year ago, and when it started, I was quite scared. At first glance, I couldn't identify what had caused it - it had just 'come out of the blue'. Over the next few months, I kept a log of the times when it started and tried to identify what the 'trigger' factors were - food, stress, etc., in the hope that I could find a link. Eventually though, for me, I realised that neither food, stress or indeed outside sounds caused my myoclonus, but for me, the condition was purely brought on by 2 things - burping and yawning. It was the control over burping and yawning that eventually stopped the myoclonus completely.

      Again, I want to reiterate that I am talking about my experiences and my actions, but my recommendations may not work for you, or indeed make things worse. I only want to try to help, which is why I am writing this. Taking burping for example, I found that when I burped, for some reason, I seemed to be partially burping 'though my ears' as well as through my mouth. I know this sounds ridiculous, but I have no other way of describing it - I found that the process of burping 'inflated' my middle ear temporarily. To put it another way, I felt my middle ear space inflate and my ear drum 'move' at the start of a burp, before the burp was released through my mouth. This 'inflating' was accompanied by a temporary 'rumbling' sound in my ear, which I think is the sound of the ear inflating - this sound was not a standard tinnitus and only lasted about a second. Now, I don't know if this is normal or not, but it was normal for me - I don't know whether my ear and throat anatomy is slightly different to other people, but I never thought this was a problem - until I correlated this burping and ear inflation with the myoclonus starting. As a result, the focus for me became trying to prevent this 'inflation' process. (PLEASE APPLY YOUR OWN JUDGEMENT FOR THE NEXT PART). When I feel a burp coming now, I don't 'push it out' as quickly as possible. This is hard to describe, but instead, as the burp comes up, I kind of inhale semi-sharply as it is on the way up. I don't know if this closes Eustachian tubes, or something else, but essentially, it prevents any of the burp entering the ear space, and instead it fully comes out through the mouth, unlike before, where it came out through the mouth after 'inflating' the ears. The burp is less satisfying, and there is more chance of making a large burping sound (so beware if in public!), but I think these are small prices to pay if the myoclonus resolves :).

      Additionally, I noticed that yawning also triggered my myoclonus. This is a difficult one to describe, but I found that when I was previously yawning, I could feel and hear air in my ear space, very similarly to how I felt and heard the burp, in other words, when I yawned, I really pushed a loud yawn, which resulted in me temporarily 'hearing' the air rush through my ear space and inflate the ear space. The way I yawn now is very different - I still fully yawn, but I don't 'push' the yawn, if that makes sense, i.e., I yawn, but keep it to a less intense, more lengthy yawn and as a result, I don't 'hear' air rushing into my ear space, nor do I 'feel' the pressure change in my ear. I also try to start the 'breathing out' part of the yawn sooner - I don't know if this changes anything in the Eustachian tubes, but for me, it seems to result in air not entering my ear. Again, this works for me and my ear biology, but may not work for you - PLEASE DON'T DO THIS IF YOU THINK YOU WILL CAUSE DAMAGE TO YOURSELF.

      Through making these changes, I was essentially able to minimise what seemed like the flow of air in the ear, and this in turn has resolved my myoclonus and I have not had it for the last 6 months! :).

      I hope you are able to find this helpful, but please bear in mind that your myoclonus may have resulted in different circumstances to my myoclonus and also bear in mind that attempting to control this flow of air in the ear may have negative effects for you, although it seems to have worked for me, at least for the time being.

      Thanks all and wishing you all a happy new year!
       
    7. ZZZK

      ZZZK Member

      Tinnitus Since:
      2002
      Cause of Tinnitus:
      Noise Exposure
      Hey Razzy, your symptoms sound exactly like mine. I got middle ear Myoclonus out of the blue in early November. I also tied a major trigger to burping and the sensation of air pressure moving through the Eustachian tubes. Oddly though yawns don't trigger me at all (although it seems to trigger everyone else). I have had thumps and episodes start without a burp however so they don't always require a burp to trigger. One of the most important things I did was get my acid reflux in check as that creates a lot of burping and thus less burping is less trigger. I also have a hunch that acid reflux may actually cause/worsen the myoclonus because it irritates the vagus nerve (just a wild idea).

      My thumping myoclonus episodes would last anywhere from 2.5 to 7 hours with 3-4 hours being the most common length. In my case the episodes have so far only been in my left ear although recently I have noticed an occasional thump in my right ear after a burp. I read online that some people have had it start in one ear and migrate to both ears (which is worrying). Thumping comes in pairs or triplets or even quads with a spacing anywhere form a few seconds to several minutes (sometimes even 20+ minutes). Average spacing probably in the 30-40 second range. I feel it like a hiccup in the ear with a loud thump (like someone thumping a microphone) and you can really feel the sensation of the contraction in the ear. I was easily able to record it in a quiet room with my cell phone held up to my ear.

      Myoclonus free time periods between my episodes have varied a lot. At worst 26 hours (about a day) but even in the beginning I had some free periods go as long as 5 days. On average though I would get them about 2-3 times per week. I am so far in the longest free period I have ever had which is currently 12 days. Before that I had a previous free period of 10 days which was the next longest so I am hoping that this means the episodes are tapering off in frequency.

      Now that is not to say I don't get an occasional thump after a burp. I still do get thumps but they haven't turned into an episode of myoclonus. A thump after a burp doesn't always turn into a full episode. Sometimes it would thump for just a few minutes and not turn into an episode. Generally though if the thumps didn't stop after 10-15 minutes they would turn into a multi-hour episode.

      I wish Chelles still posted on here as her myoclonus sounded very similar to mine (although her episodes seem to last quite a bit longer and she has it in both ears) and I am curious to know what her prognosis has been. I am really hope full for her that she isn't posting anymore because her myoclonus has resolved.

      I read all the peer review I can find on the subject and I can tell you that the research is rather sparse. I also believe that the loud hiccup/forceful thump we are hearing is not actually the stapes or tympani but rather a form of palatal myoclonus way up high with the muscles slapping together the Eustachian tube. Even though there is clearly no movement of the palette within the mouth at all (as you normally see with palatal myoclonus.) I believe this is the reason why some have had the stapes/tympani cut but still get the thumps. This was also strongly suggested in some of the peer review that this type of thumping hiccup myoclonus is likely from the muscles around the Eustachian tubes and not the stapes/tympani which I think produces more of a rapid clicking fluttering sound rather than loud forceful microphone thumps. The research in this area is really poor and not well understood. For anyone reading this I would be skeptical about cutting the stapes/tympani muscles as this may not help your myoclonus if it is indeed your Eustachian tubes slapping together.

      Now I also scoured the Internet for posts from sufferers of the condition and I can tell you what I have found in my research. First, there aren't a whole lot of people posting over the last 10+ years and I often found the same people posting on more than one forum. It is indeed rather rare, similar to that of other extremely rare diseases. The important thing I found is that many sufferers do seem to go into remission after enough time passes. Sometimes it takes a few months of suffering with episodes but sometimes over a year or even more. It is important to note though that although people may remain in remission for a while (years) they can have it return and go through another period of episodes. It is unpredictable like that. I imagine it is due to a complex interaction of muscles and nerves. If you do something to aggravate those muscles and nerves it can become episodic again. Is it TMJ related? Is it upper cervical related? Who knows. They age, sex, and occupation of sufferers seems to be all over the board. Also for some strange reason the left ear seems more susceptible than the right for some reason.

      I have been taking Magnesium and B-complex supplements as well as Vitamin-C. I don't know if it helps or not but many people seem to have claimed to see some correlation.

      Anyway, I have also taken great efforts to control my burps which does seem to help prevent the onset of an episode.

      If anyone wants to chat more about it feel free to PM me or post in here. If any researchers want to get together and co-write a paper on the subject I would be interested as we can really use more research on the subject. I have spoken to surgeons and heads of ENT within large hospitals and they too are severely lacking in information and some have never seen a single patient over their entire career.
       
      Last edited: Jan 9, 2018
      • Like Like x 1
    8. plopp

      plopp Member

      Tinnitus Since:
      03/2017
      Cause of Tinnitus:
      unkown
      Hi Razzy and ZZZK,
      I really appreciate your posts.

      I've had exactly the same symptoms for about a year now.
      A muscle spasm in the inner ear or ear region that causes thumping sounds in my ear and is triggerd in 95% of all cases by a hicup, burp or by yawning that last from a few seconds up to 10 hours a day, I get longer periodes for around 8-10h on average every 3-4 days.
      Very annoying to say the least.

      I started to take excessive amounts of Magnesium (400-500g elemental Mg) about 6 months ago (GP told me so) and didn't really help.
      I also went to ENT with a very good reputation for middle ear problems, he told me it's probably the tensor timpynii or stapedius and I should see a neurologist and eventually take all these anti spasm/ musclerelaxent stuff that causes so many side affects...
      But my GP and I believe it has something to do with to much or to less pressure as it is caused by the hicup, yawning and burping. And I also dont experience this spasm and thumping when I press my finger in my ear.
      Well, I will see another ENT specialist, head of the ENT section of Europes largest university hospital in about a month and I'm looking forward to maybe get some more advice there. I will definitly let you know!
      I also went to a CMD specialist for her to have a look at my teeth and yaw. She said it's very unlikely that my symptomes derive from my yaw. But I also have a minor malpositioning there and I will get a treadment from here as soon as my health insurance confirmes the coverage of these costs.

      Same as you I was able to minimize these episodes of ongoing thumping a lot thrue burping and yawning differently, but I still struggle with the hicups and with the yawning early in the morning when I am still half asleep or at the middle of the night. Luckily I am able to sleep with this thumping by pressing my ear on my arm and sleep like that. I now had several 10-12 days symptome free which was awesome.

      Right know I'm trying a caffein free time which helped someone I read on the internet elsewhere. I'm a week in, sadly it doesnt seeme to help but I'll keep going for another few weeks before I say this doesnt help me.

      What I am interested in is:
      Do you guys also feel the spasm or is it only the thumping sensation? I believe I can feel this spasm and I always think its crazy that I can't see it in the mirror is it feels so intense and close to my outer ear/ jaw.

      Did you guys experience a lump in your throat prior to getting these spasm or do you still get this feeling? I had this feeling for months and it started with when I started to get the spasms. Luckily it's gone now and only comes back every few months for a few days. If this is the case, we all should maybe look more at neck muscles and/or silent acid reflux? Let me know what you think.

      For those out there with the same condition: Don't panic. I know it's very hard some days, but time goes on and you appreciate those days without thumping a lot more. Try to listen to music or work in a louder envirement on "thumping days" as this makes the sounds and this spasm feeling a lot easier to deal with.
       
    9. sdotosull

      sdotosull Member

      Tinnitus Since:
      02/2010
      Cause of Tinnitus:
      Loud Noise
      Hey plopp, not much more to add but keep me in the loop. Also suffering with this.
       
    10. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Advocate

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      My previous post here may be of some interest to you:
      https://www.tinnitustalk.com/threads/tinnitus-appears-out-of-the-blue.27536/#post-317948

      I have had the spasms and the clicks. It actually all started with the strong episodes of spasms in my left ear. That's when I realized something was wrong with my ears or hearing and I started investigating. This was before I developed chronic, tonal, central tinnitus. I have had surgery in the back of my head, but I don't get the rapid muscle contractions as often as i used to. It has almost completely gone. The problem now is the clicking and the tinnitus of course.

      How bad is it for you? Do you have the rapid contractions with thumping kind of sound? Do you hear a click sound as well? I don't know what your situation is, but I held off with surgery and I am glad I did now. Hopefully the clicks will fade away one day as well. Also, surgery I think is the more viable option, rather than Botox injections. The injections wear off and shortly you have the same problem again.
       
    11. Steve76

      Steve76 Member

      Tinnitus Since:
      4/20/2000
      Cause of Tinnitus:
      Unknown
      I have the same exact problem. Everyone here explains it so well. I’ve been dealing with the thumping since 2000. It’s very difficult to deal with, some days I just want to quit. I’m so relieved to be able to share this with other people that actually understand.
       
    12. Swampy

      Swampy Member

      Location:
      Berkshire, United Kningdom
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Hey there. I don't really have any help to add but I suffer with this also. I get the rapid thumping/spasm sensations that can last for days after a hiccup or burp or yawn. Not sure if it's related to any other ear issues I have though as I also have Patulous Eustachian Tubes, sinus issues/etd somehow even though they're opposite things and many other ear issues. It's very bizzare as I can have some days where it will have a little wave of spasms/thumping after a hiccup or yawn etc but then stops, and other times it can last for days.
      Wish you all the best. Keep us updated :)
       
    13. ridgew

      ridgew Member

      Tinnitus Since:
      2004->2012->2017
      Cause of Tinnitus:
      Acoustic trauma
      I have very strong and constant feeling of pressure behind the eardum and sometimes clicking, but not often.
      I have tried intramuscular injections of magnesium and it helps somewhat as long as it lasts. For me the fullness doesn't go away completely, but I have a severe case with multiple aggravations. There is definitely much less suffering.
      I suppose intravenous injections will be much more effective but there can be severe side effects from that.
      Oral magnesium doesn't do much for me.
       

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