For Those with Middle Ear Myoclonus...

[Chelles]

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?

 

[OPlax]

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

 

[Hdun97]

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...

 

[April]

@Hdun97

I'm currently seeing an osteopath as well as doing a course of cognitive therapy,

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.

 

[innovationalist]

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.

 

[razzy2017]

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!

 

[ZZZK]

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.

 

[plopp]

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.

 

[sdotosull]

Hey plopp, not much more to add but keep me in the loop. Also suffering with this.

 

[Samir]

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.

 

[Steve76]

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.

 

[Swampy]

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

 

[ridgew]

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.

 

[MEMory]

Hello everyone.

First post ever, on any health forum in fact. I'm usually a reader.

I just want to share that I'm one of yours. My situation is:

• Canadian (urban center), male, 30 yo.
• Mainly triggered by "violent" or extreme burping/hiccuping/yawning. I would say that, of all the episodes, less than 1% started out of nowhere, without a trigger.
• Microphone-style thumping like everyone describes here. I can also feel it.
• About 10-15 thumps followed by a 30-second to 2-minute break.
• Some episodes are very short, like 5 minutes. Some other episodes (I have one as I'm writing this, which is why I post here) last longer: it's been more than 12 hours now.
• Typical episode usually ends with longer breaks between thumping, and eventually does not come back until the next episode.
• Typically does not occur at night: I can sleep.
  
• Can occur immediately when I wake up: I suspect that I'm burping/hiccuping in the morning, still asleep, just before I open my eyes.
• If I stick my finger into my ear canal, creating a seal, and press a little bit, I can inhibit the thumping completely. The rare cases when I need to sleep with an active MEM, this is how I fall asleep.
• Another way to sleep: have a fan (gently) blow air into the affecter ear: the wind sound blinds with the thumping somehow, it's more confortable.
• I almost do not hear it in my car. I guess my engine is loud..!
• Experienced this in both ears, and (only) once both at the same time which, given that thumping is not synchronized between ears, is very annoying.
• Active MEM is generally comorbid with other (mild) myoclonus sites: random twitches in legs, arm, shoulder, fingers, neck, eyelids (often), and eyebrows (often).
• Lack of sleep seems to make episodes more frequent.
• Tried oral Mg: does not change anything from my perspective.
• First episodes were in early 2012, every 2-3 days, for a few weeks. Saw an ENT during this phase: he told me that it goes away on its own, and that I don't need to worry. Indeed it went away a few weeks later (completely free) until the summer of 2012, helped by avoiding "extreme" burping/hiccuping/yawning.
• Summer 2012: 2-3 months of almost everyday episodes.
• Fall 2012 to fall 2017: complete remission. Even without explicitly avoiding excessive burping/hiccuping/yawning. I want to stress this: it is possible to get a 5-year thump-free remission with this affliction. I hope this is reassuring for some people; it is for me at least.
• Fall 2017: a single, random whole-day episode.
• Today: had a 3-hour episode 4 days ago, a 5-minute episode yesterday, and now experiencing a rather long episode as previously stated. Right ear this time. Might be related to the fact that I slept only 3 hours (because I went to bed very late).

I like the theory that it's not tensor tympani- or stapedius-related, but I would not understand how I can inhibit it with my finger (or any seal I guess) in this case. It seems that I'm blocking the tympanic membrane from oscillating, caused by the tensor tympani muscle which is suddenly pushing/pulling the malleus. Indeed, I can produce the exact same thumping by pushing/pulling air onto the tympanic membrane with my finger sealing the canal.

Also, I don't think the common burping/hiccuping/yawning rumbling we're hearing and experiencing is related to air pressure in the middle ear. From my point of view, it's this:

Contracting muscles produce vibration and sound.[3] Slow twitch fibers produce 10 to 30 contractions per second (equivalent to 10 to 30 Hz sound frequency). Fast twitch fibers produce 30 to 70 contractions per second (equivalent to 30 to 70 Hz sound frequency).[4] The vibration can be witnessed and felt by highly tensing one's muscles, as when making a firm fist. The sound can be heard by pressing a highly tensed muscle against the ear, again a firm fist is a good example. The sound is usually described as a rumbling sound.

Some individuals can voluntarily produce this rumbling sound by contracting the tensor tympani muscle of the middle ear. The rumbling sound can also be heard when the neck or jaw muscles are highly tensed as when yawning deeply. This phenomenon has been known since (at least) 1884.[5]​

Anyway, I think that it's wonderful that we can find each other here. Until this day, I was not aware that other people had MEM triggered by burping/hiccuping/yawning. This is exactly my case. I don't feel crazy or unique anymore now: it's a great feeling! And the posts are recent, which is also great somewhat.

We need to share everything we find that can help because, clearly, MEM is very rare, and this thread seems to gather a subset of sufferers which have this specific trigger. Then maybe there's also a common solution.

Please keep in mind that it does go away. Most of you experienced multi-day breaks here, and as you can see, multi-year breaks are also possible. Most of the cases that I read online indicate that it eventually fades away. In the meantime, psychotherapy can help, even if it sounds frightening.

I don't get why researchers are not more interested into MEM: it's so fascinating. But at the same time, I can understand why:

• It's very rare: it must be very hard getting research money for such a rare irritation. Also it must be hard to find local subjects.
• It does not cause pain.
• It is typically not permanent, with multi-day breaks between episodes, and sometimes multi-year.
• There are known, documented, and effective cures: once palatal myoclonus is excluded, tendonectomy of the tensor tympani and/or stapedius muscles seem to work very well and without much complications. There's a promising 2014 paper which describes a minimally invasive treatment option for MEM (endoscopic tendonectomy). So there are some developments. Botox injection seems to work too.

Reading all your posts, I just wish ENTs would take the time to understand each case and accept the challenge to find targeted solutions.

I hope this helped. Take care everyone!

 

[Anthonyr]

My left ear makes a huge thump/flutter whenever I talk or hear noise. It's actually much more unbearable than my tinnitus .

My hope is that it's due to my anxiety and that it will die down. I also have BFS which probably explains why I have it.

 

[Gman]

Has anyone tried cyclobenzaprine?
It's a type of muscle relaxant. I had wondered if it was worth consulting my doctor about.

I only get occasional big MEM thumps which I think is just part of the fasciculations I get around my body.

I do get more longer muscle contractions and tension in the MEMs. Clonazepam works to relax them but definitely not a long term solution. No way.

 

[ridgew]

Has anyone tried cyclobenzaprine?
It's a type of muscle relaxant. I had wondered if it was worth consulting my doctor about.

I only get occasional big MEM thumps which I think is just part of the fasciculations I get around my body.

I do get more longer muscle contractions and tension in the MEMs. Clonazepam works to relax them but definitely not a long term solution. No way.

I wanted to try it, but it didn't pass certification in my country so I'd need to import it. Good thing I'm working in pharma buisness now so I can get any drug there is which did pass it without bothering with prescriptions.
I started to use another muscle relaxant called tolperisone recently. I'm feeling much better, at least 30% reduction in fullness. My dosage is 100mg*3times/day, no side effects.

I have clicking only very rarely, my issue is fullness 24/7.

 

[plopp]

Hi Guys,
I am amazed how many people actually do have the same symptoms and are here on this forum.

For those who experience clicking and the thumping is not hicup or yawn and burp-related: I dont think we are talking about the same thing. Nevertheless I wish you find cure anyhow and maybe even some of the things we discuss can help you.

You got some interessting points MEMory. Thanks for your post! You cheered me up!
I also see what you mean when you say that you dont understand how you could stop the thumping by putting your finger inside your ear if its pressure related.

Last week I went to the ENT professor which is the head of ENT clinic here. I told here about my symptoms and she didn't seem to have heard about EXACTLY that. Nevertheless it was great speaking to her as she did get the problems I have with this condition. 2 doctors came by and the 3 of them they were pretty sure that the things I experience (thumping, twitching that I can feel) can only be related to the Musculus tensor tympani!
She told me she could probably make it go away by cutting the tendon of that same muscle. Anyhow, we decided that she does need to have another look at my eardrum when I do have the twitching to confirm that it can only be the tensor tympani (I believe she expects to see eardrum movement) because she would need to "open my ear" to cut the tendon. I dont know yet what it means to open the ear.

MEMory, Ive seen the study you posted and will ask about this method the next time I'll go there.

I am interested why someone with the same symptoms in this forum posted that he didnt find a cure after both tendons of the M. stapedius and M.t.t. were cut. ENT was pretty sure this is not related to palatal muscles.

Right now I am feeling pretty good and the episoded of several hours of twitching are only coming once in 14 days for some time.
I will decide wether I will do this surgery depending on how severe this surgery will be and wether the episodes come back more regulary again.

Maybe someone here knows how the surgery to cut the tendon is done at the moment?

All the best to you guys, I will let you know as soon as I discover something new.

 

[Gman]

I wanted to try it, but it didn't pass certification in my country so I'd need to import it. Good thing I'm working in pharma buisness now so I can get any drug there is which did pass it without bothering with prescriptions.
I started to use another muscle relaxant called tolperisone recently. I'm feeling much better, at least 30% reduction in fullness. My dosage is 100mg*3times/day, no side effects.

I have clicking only very rarely, my issue is fullness 24/7.

Why didn't it pass certification?

Interesting that you have had a reduction in fullness with a muscle relaxant. Seems to me that MEMs are maybe one of the, or the main, reasons for it, by altering the middle ear pressure and/or affecting proper functioning of the ETs.

 

[ZZZK]

Hey guys. Wanted to post on here with an update. So far I have not had thumping episodes *knock on wood* since just before New Years. HOWEVER, this disease has continued to progress in other ways unfortunately. Likes others have mentioned MEM seems to coincide with twitches in other parts of the body but particularly in combination with the eyelids. In my case I get bilateral eyelid spasms and random twitches on and off through various muscles in the body. Unfortunately I have started to get clicking and twitches that I can hear and feel behind my nose and at the back of my throat. I can also feel very slight tremors in my pallet when I push my thumb up and back against my pallet just before gag reflex. I think there are multiple muscle groups back there being innerved. While I don't get the thumping I do get clicks in my ears nearly 24/7 but they are very tolerable because they are very subtle and I notice them mostly when things are quiet. I believe these clicks are from the eustachian tube muscles having a tremor. What I really think is going on is that there are stray impulses going to various muscles in the area. When the tensor tympani is involved it probably is the one producing the heavy and loud thumps. Cutting that muscle should at least stop the loud thumps in theory. What I would be curious about is the people who had the tensor tympani cut but had the symptoms continue did you have thumping or clicking? Loud microphone thumps I believe are coming from the tensor tympani. Clicking I believe is coming from the eustachian tube muscles. BTW I still get the loud microphone thumps after a burp sometimes but luckily they haven't turned into episodes again. There was one day a few months back where I was getting random thumps every few hours like it was trying to flare back up but luckily they subsided.

Now the strange thing about the clicks and pops I feel and hear behind my nose and at the back of my throat is that they seem to be somewhat position dependent. When I lay on my back in bed they are at their worst but seem to pass or be less frequent when I lay on my sides. I have a feeling that this disorder has to do with nerve compression either in the spine or perhaps somewhere in the base of the head/brain. I don't think it's originating in the brain as you get with some types of palatal tremor in people with lesions due to stroke or MS. I just had another MRI and it was completely clean. I did start having a crackling pop rocks feeling in the back of my neck when I tilt my head around (started about 2 years ago). This is due to spine degeneration that happens with age and I wonder if it has somehow pushed on some nerves creating all this mess.

Some of you have PM'd me and the one thing I notice is many of you seem to be quite young 20-30's. I'm nearly 40 myself. I'm curious to know if any of you had any headaches or dizziness prior to this affliction? I have had headaches dizziness on and off for the last 2 years and I refuse to believe they are unrelated. One of the areas I haven't explored is a possible CSF leak causing the brain sink into the skull. I also saw ear clicking as a symptom of the nerve compression that some with hemifacial spasms seem to have.

I also began to have a very strange sensation on my left ear lobe. It started with a spider web feeling but now it's more like a dull ache on and off. Clearly some kind of nerve is being stimulated there. The odd thing is most of these nerve pathways are fairly unrelated. I saw a head neurologist who basically poo pooed everything because I had a clean MRI and a completely normal neurological exam. VERY FRUSTRATING.

I think one of the most frustrating things about this disorder is the lack of medical knowledge on the subject and its rarity. It really makes you frustrated about the dumb luck you had to be 1 of 50 to 100 thousand to come down with this. I'm sure others with rare afflictions probably all feel the same anger with the hand they were dealt.

Despite all this I still try to live my life best as I can and get through my day.

 

[MEMory]

So far I have not had thumping episodes *knock on wood* since just before New Years.

As I wrote earlier, you could be free for many years. You can also have sporadic episodes, like a few hours and then nothing for months. I hope this part is at least somewhat reassuring to you.

What I really think is going on is that there are stray impulses going to various muscles in the area. When the tensor tympani is involved it probably is the one producing the heavy and loud thumps. Cutting that muscle should at least stop the loud thumps in theory.

Interesting theory! That being said, I've had this since 2012 (with a 5-year break, and many multi-month breaks), and I've never experienced the clicking and palate tremor you're reporting. In my case only both tensor tympanis are involved as far as hearing/ears are concerned, but I also get eyelid twitches from time to time.

BTW I still get the loud microphone thumps after a burp sometimes but luckily they haven't turned into episodes again.

Yes this also happened to me during the 5-year break, 3-5 thumps after a burp sometimes, but not an episode starting. In the end it did not trigger any anxiety, it just felt normal. I mean I don't care.

I'm curious to know if any of you had any headaches or dizziness prior to this affliction?

No specific headache/dizziness on my side. I get minor headaches sometimes like everybody.

I think one of the most frustrating things about this disorder is the lack of medical knowledge on the subject and its rarity. It really makes you frustrated about the dumb luck you had to be 1 of 50 to 100 thousand to come down with this. I'm sure others with rare afflictions probably all feel the same anger with the hand they were dealt.

Yes and I believe it's one of the reasons that there's little research invested on the subject. I mean if hundreds of millions were injected into this issue, I'm pretty sure researchers would find something interesting, if not a definitive, non-surgical cure. Also the fact that studies report a 100% cure rate with the tensor tympani tendonectomy makes it less interesting to find alternative solutions.

Despite all this I still try to live my life best as I can and get through my day.

Excellent spirit. It's hard to keep it all the time, but it helps. I know it sounds a little cliché, but doing activities, seeing people, etc. to think about something else while it passes naturally can really help. Having sex during an episode is an effective natural relaxant for me , and so is taking any form of vehicle.

I'm having an episode now (post-violent-burp). It's been an hour or so. Also had a 4-hour episode two days ago, after a welcome 3-day break. The 12-hour one I had while writing my first post stopped while I was writing the post! Perhaps because I felt relaxed while sharing my situation?

I'm supposed to meet an ENT, one of the best of the country according to my GP (indeed he published a lot and created new surgical techniques involving the tympanic membrane), eventually. It could be many months before I get the appointment as what I have is not considered an emergency at all (and I agree it's not, compared to a severe otitis, sudden hearing loss, a barotrauma, etc.).

 

[MEMory]

I want to add points to my case that I forgot, if some of you can relate:

• I enjoy listening to loud music, especially in my car, or when playing guitar/bass/drums with friends or alone in a studio.
• I don't believe I suffer from any form of hyperacusis. I tolerate loud sounds (I guess my tensor tympani is working after all). However, when there's a sudden, short, loud sound, I can hear a 200-ms crackling noise when it stops, in one ear or the other. I noticed this before even getting MEM. It's not bothering me: I expect it, it lasts around 200 ms, there's no pain.
• Never suffered from migraine.
• I am a hypochondriac. Very anxious about my health in general. I've been anxious tens of times about pretty much all the parts of my body. Many many (probably useless) visits to the GP and several medical specialists. It doesn't help that everything health-related is free here. For me, any health issue, as benign as it can be, means it's chronic and will get worse and will make me lose my job, girlfriend, friends, etc. I need some psychotherapy to help me with this. Rare are the moments in my life where I'm not anxious about some part of my body.
• I usually have some caffeine intake from diet Coke, but I stopped two weeks ago in the hope of reducing the frequency of MEM attacks.

You know, the more we find we have in common, the more we can find solutions. We need a big pool of MEM sufferers (especially burp/hiccup/yawn-triggered MEM) who share properties/conditions so that we can find connections/causality. MEM occurs for a reason, it cannot just be random. I know doctors like to say this, but that's because they have no studies to rely on.

I have a few questions if some of you can answer:

1. Do you suffer from myoclonus at other places of your body (eyelids is typical)?
2. Do you find that sleep deprivation makes MEM, and myoclonus/twitching in general, worse?
3. Do you find that stress or anxiety makes MEM, and myoclonus/twitching in general, worse?
4. Do you have any way to avoid triggering burps? When air goes up your esophagus, you need to do something with it. I just don't understand why I need this violent hiccup prior to expelling the air. There must be a maneuver that I'm not mastering here.
   
   What I do to avoid them is that I swallow this air and then for some reason it can come out without the hiccup/TT activation, but this eventually leads to heartburns, to the point that I need to take Zantac sometimes. Avoiding excessive yawning is easy.

My current tracks of solution are:

1. Getting more sleep, and of greater quality. I believe I have a huge sleep debt.
2. Managing stress and anxiety.
3. Reducing myoclonus in general, in all body parts. It is obvious for me that all of them are related to something missing: sleep, some vitamin, diet, physical exercise? I don't know. I'm usually on the side of science, reproducible experiment, but could acupuncture help?
4. Massaging the TT. If I massage a twitching muscle, it gets better. At least I have the feeling of controlling something. Of course, the main issue is that you can't touch the TT. But what if you could control it indirectly?
   
   If I press my ear canal with my finger, it moves the tympanic membrane, which moves the handle of the malleus, which moves its neck, which loosens the TT tendon. I believe this is why I can stop the thumping with my finger: the TT is contracting, but the tendon is already relaxed.
   
   
   
   
   
   Are there other ways to massage the TT? When I close my eyes strongly, I can hear the low rumbling that I get when I yawn extensively. My guess is that I'm contracting the TT somehow. Is there any maneuver that could reset its state or something? Perhaps chewing, speaking, or swallowing in a specific way? Knocking or pressing on specific bones?

 

[StephAtkings]

Hi Guys,
I had to post on here as my symptoms are exactly the same ! My biggest triggers at the moment is burps, if I do a big stretch yawns and hiccups ! In the past I would burp and maybe get a few thumps and that would be it ! Now if I burp I get about 10 to 25 thumps in a row and then an attack starts, sometimes it can last 10 minutes other times 30 to 40 minutes or 18 hours ! I had this issue when I was 16 and it was only ever set off by hiccups ! It then went away and came back when I was 23 ! Again only hiccups would set it off and I then went into remission for about 5 years ! It then came back when I was 28 in my right ear ! I done a massive burp one day and that was it ! But this time it would also set off on its own accord ! No triggers at all ! After 3 months of having thumps every 2 to 3 days it went away for a year ! Then on January the 20th 2017 I did a massive burp and it's been back ever since ! But now it affects both ears !!! Again it was a burp that set my other ear off ! I genuinely think burps damage my ear and this is why I get these attacks ! Back in 2017 I tried the method of not burping but it would just start on its own !! 2017 was my year of hell I could have the thumps every single day ! I was seeing a doctor who was trying to help me, he told me if things get really bad he would do the surgery ! After hearing this my thumps got much better and I would get breaks of 10 days or more ! I went a whole month once with no symptoms !! Then I went back to see this doctor in April for a catch up ! He had done more re search and said he didn't think surgery would be an option as no doctor he has spoken too can give him a definitive answer if surgery can cure this ! He didn't want to make me worse ! At the time I saw him my symptoms were much better and I agreed ! But a few weeks later I was sleeping I felt myself stretch and my ear went crazy loud hard thumps about 10 to 25 in a row and I knew it was back ! Everytime I burp my ear would go crazy large heavy thumps but 20 in a row ! At the moment the only trigger is burping and stretches ! It's not started on its own this time round ! Fingers crossed !
Does anyone else sometimes get different symptoms ! I get all different times of thumps ! It's like it always changes ! Sometimes it's hard thumps and this will last a few months ! Other times it can be really soft thumps that I don't notice as much and again this will last a few months ! Or I have even had episodes where I get one thump that maybe comes every 20 minutes to an hour !!! My symptoms will stay the same for a few months and then change !!
I have also noticed that going for a facial or massage makes things worse so I now longer do this ! Anyways apologies for my rant ! I have had this for almost two years and I am just so fed up ! When I think it's getting better it then gets worse ! I am scheduled to see my doctor again on Tuesday basically to tell him things have got worse since he told
me he wouldn't do surgery ! I think this goes to show that anxiety has a lot to answer for this condition! It's just funny how things got better when I thought there was a resolution and now I don't have any support things have got worse! The one thing that helps me through is to know this it's not forever ! It will change at some point ! I hope maybe in 5 years time I will get used to it and stop getting myself upset when an attack happens. Thanks for listening x

 

[MEMory]

Hi Guys,
I had to post on here as my symptoms are exactly the same ! My biggest triggers at the moment is burps, if I do a big stretch yawns and hiccups ! In the past I would burp and maybe get a few thumps and that would be it ! Now if I burp I get about 10 to 25 thumps in a row and then an attack starts, sometimes it can last 10 minutes other times 30 to 40 minutes or 18 hours !

Welcome to the club! This is indeed similar to our common symptoms/triggers, at least mine.

I had this issue when I was 16 and it was only ever set off by hiccups ! It then went away and came back when I was 23 ! Again only hiccups would set it off and I then went into remission for about 5 years ! It then came back when I was 28 in my right ear ! I done a massive burp one day and that was it ! But this time it would also set off on its own accord ! No triggers at all ! After 3 months of having thumps every 2 to 3 days it went away for a year ! Then on January the 20th 2017 I did a massive burp and it's been back ever since ! But now it affects both ears !!! Again it was a burp that set my other ear off !

Thank you for contributing your story as it shows, like mine, that multi-year breaks (up to 8 years in your case) are possible and do happen. I believe this can reassure people by demonstrating that, given the same symptoms, it's not a degenerative condition. At least it does reassure me and I see this as a (partial) success story.

I genuinely think burps damage my ear and this is why I get these attacks ! Back in 2017 I tried the method of not burping but it would just start on its own !!

I have the same feeling about damaging the TT muscle with excessive belching. Of course I have no way to confirm this medically. Maybe our real issue is with belching and the MEM is secondary to that, but can persist the more it is triggered.

Does anyone else sometimes get different symptoms ! I get all different times of thumps ! It's like it always changes ! Sometimes it's hard thumps and this will last a few months ! Other times it can be really soft thumps that I don't notice as much and again this will last a few months ! Or I have even had episodes where I get one thump that maybe comes every 20 minutes to an hour !!! My symptoms will stay the same for a few months and then change !!

Yes it changes for me too. Currently when an episode starts, I don't get groups of 10-15 thumps anymore, only one or two every 1-2 minutes, sometimes up to 10 minutes. This is much more tolerable for me as I can have conversations, focus on work, and fall asleep more easily. I consider this an improvement, albeit possibly only temporary.

Also lately my episodes last from an hour to 4-5 hours instead of the 12- and 14-hour, day long episodes I was getting 2 weeks ago. That's also good news to me.

It starts on its own sometimes too. Some people have been claiming that they can start it just thinking about it.

I have also noticed that going for a facial or massage makes things worse so I now longer do this !

Wow this is interesting. Thanks for reporting this, it could help.

I think this goes to show that anxiety has a lot to answer for this condition! It's just funny how things got better when I thought there was a resolution and now I don't have any support things have got worse! The one thing that helps me through is to know this it's not forever ! It will change at some point ! I hope maybe in 5 years time I will get used to it and stop getting myself upset when an attack happens. Thanks for listening x

Yes, it's getting pretty clear to me that anxiety and lack of sleep are not helping at all. And no it's not forever; we have different lengths of MEM activity.

Lately I found bed bugs in my couch and the anxiety switched to this issue instead of MEM. I've had a 7-day remission as a result.

I think getting used to it is key. It is very frustrating and like anything irritating, lack of sleep makes tolerating it more difficult because of increased irritability.

People have all sorts of diseases and conditions which they learn to deal with to continue living and enjoying the good things of life. Again psychotherapy or maybe alternative medecine if you're into that can help.

And yes, sugery can work. Although it's not been perfect for some people, lots of cases and studies confirm that it led to a total and permanent remission. The challenge seems to be finding a surgeon, and a very experienced and perfectionist one, which is willing to perform this. Without pain or hearing loss, surgeons are not so eager to operate because they judge that the risks are not worth it. But when it works, it's a big relief for the patient.

Tell me, do you experience myoclonus elsewhere on the body? Is it in a single or two ears currently? Are you anxious about your health in general? What do you do for a living?

Thanks for sharing your case Steph!

 

[StephAtkings]

Thanks for coming back to me MEMory! There is a facebook page called tonic tensor tympani syndrome are you a member of this ? Its really good and has given me alot of support when I have bad episodes. Like you i can deal with the thumps when they are minutes apart ! I have not had the 15 to 20 thunps in a row for about a year ! I am sure this time next month it will change symptoms! Always does ! Its affects both ears for me ! My right ear at the moment is doing one thump every 10 to 20 minutes ! Sometimes hour long gaps ! But I can deal with this ! My right ear never normally thumps hard! My left is the hard thump ear !
I work in an office during the week but at the weekend I sing in pubs and clubs and yes it can be loud. but the thumping started before I exposed myself to loud music.
And yes i do worry about my health ! Anxiety has always been an issue for me! Thank you so much for the reply it really helps to discuss with others who also suffer

 

[ZZZK]

Seems like everyone who has this condition seems to have a history of generalized anxiety disorder prior to it (myself included). I wonder what the relation perhaps some kind of neurotransmitter issue.

Sorry to hear it affected some of you at such a young age. My first epidode was at 37 so I guess I'm lucky there...

Have any of you made any connection to diet? I felt like sugary/carby foods especially in the morning made episodes more likey. In fact fasting everday till mid late afternoon seemed to help.

 

[StephAtkings]

I have never made a connection to diet but I will keep a note of what I eat each day to see to see. If this condition did not affect my sleep I think I could handle it better but the constant waking up is really taking its toll ! Have my doctor appointment tomorrow. Been seeing this guy for over a year but I am letting him know tomorrow that I am not coping and hoping that he will agree to surgery if this condition is still bad in a few years time ! I have had this for almost two years ! Really hope my remission will come !

 

[StephAtkings]

So back from the hospital... ! Do you know what is so frustrating ! My ear was thumping all morning and stopped an hour before my appointment wtf !!!!
Anyways my doctor really wants to see my ear having an attack ! But it's just not happening ! He has agreed that he will proceed with surgery as a last resort but I have still to keep checking in with him as he really wants to see my ear in action !

 

[plopp]

So back from the hospital... ! Do you know what is so frustrating ! My ear was thumping all morning and stopped an hour before my appointment wtf !!!!
Anyways my doctor really wants to see my ear having an attack ! But it's just not happening ! He has agreed that he will proceed with surgery as a last resort but I have still to keep checking in with him as he really wants to see my ear in action !

Yeah, I know what you mean. Same story last week...
Luckily I have the agreement with the doctors that I can come in without appointment when it happens now.
But usually thats not during business hours

Anyways, right know I am thinking about surgery a lot. I will probably do it as soon as it is confirmed by the doctor, that it is a spasm of either the t.t. or stapedius. Last time I was there, they told me that there should be visible movemt of the eardrum when one of the above muscles is twitching. I just dont won't to suffer from the thumping for another few years even if there are breaks of months in between. I think after 8 weeks everything should be healed again and problem is solved.

I have a few questions if some of you can answer:

1. Do you suffer from myoclonus at other places of your body (eyelids is typical)? Yes, legs, arms, face, regulary but only for seconds.
   
2. Do you find that sleep deprivation makes MEM, and myoclonus/twitching in general, worse? I think so, yes.
   
3. Do you find that stress or anxiety makes MEM, and myoclonus/twitching in general, worse? I haven't seen this connection yet.
   
4. Do you have any way to avoid triggering burps? When air goes up your esophagus, you need to do something with it. I just don't understand why I need this violent hiccup prior to expelling the air. There must be a maneuver that I'm not mastering here. Puh, really hard to describe. I changed my way of burping so it doesnt trigger it anymore really, but I dont know how. Its like I let it out very silently. As soon as I get a "real" hiccup which is what I get after many meals only for 1-2 hics the thumping will start.
   
   What I do to avoid them is that I swallow this air and then for some reason it can come out without the hiccup/TT activation, but this eventually leads to heartburns, to the point that I need to take Zantac sometimes. Avoiding excessive yawning is easy. Try to breath in as soon as you recognize a starting hiccup, for me that sometimes stops the body wanting to hiccup.

All the best for you guys!

 

[MEMory]

Funny how I wrote a few days ago that I wasn't getting the 10-15 thumps anymore and only a single one every now and then, but a few hours later, I got a 12-hour, 10-15 thumps every 30 seconds attack. This was triggered by an uncontrolled burp, unfortunately. In fact I was so asleep when going to bed, at this point it was only a single thump every now and then, and I fell asleep and woke up like 3 hours later and it was gone. Luckily I was attending a music festival the whole day and evening so I didn't really hear the episode, but I knew it "was there".

Until now, where it just started on its own, but the single thump type. Last time I had this starting on its own, it lasted about 5 hours, which is reassuring to me, or at least brings hope. But really this type is not so bothering. I can work and even sleep (depends on my stress level, mostly). It even seems "softer" (quieter?) than the multi-thump episodes. The very first thump inevitably induces a generalized stress and I can feel the stress "current" propagating all over my body, down to my toes and fingertips. This is because I don't expect it, unlike after a hiccup/burp. The stress goes away after a few minutes.

So yes, it changes, and sometimes it's random.

I never experienced that a single-thump episode type transforms into a multi-thump one. I can have two or three in a row sometimes, but it will soon return to a single one. Usually it's the opposite, and that's a sign that it's ending somewhat soon (muscle is tired?).

Also I believe I never experienced two episodes the same day. When it stops, it stops for at least one day.

I noticed, during my 7-day break, that other body parts were almost never twitching as well. I'm pretty sure there's a neurological connection there: it's not the muscle's fault. But then again, WTF is happening when a hiccup/burp triggers MEM if it's a neurological issue? Nerve pinched or something? It's so mysterious. Maybe this trigger/connection is part of the answer. Scientists, please study me.

It's funny that myoclonus means the brief, involuntary twitching of a muscle or group of muscles, yet in our case, it's only partially involuntary, as we can start the involuntary twitching voluntarily .

At least I got a break yesterday. I believe I'm getting more episodes in the last days because I'm getting less sleep, which is my fault because I've been going out late a few times and waking up early anyway.

Sometimes I tell myself that I could tolerate day-long single-thump episodes every day, for the rest of my life, as long as it stops when I sleep and that it doesn't degenerate into multi-thump or something else. Some sort of contract with my imperfect body.

Here's a relaxing technique I use. When I have an episode, especially of the single thump type, I wait 30-40 seconds and then put my finger in my ear canal when I feel that I should be getting a new thump anytime soon. Like I wrote previously, with a finger in my ear canal and some pressure, I can't hear/feel the thumps. I let my finger in for 20-30 seconds, and then remove it. Then I wait another 40 seconds, etc. Sometimes, because the thump happens when my finger is in (but I can't know this for sure), it gives the impression that I'm MEM-free for like 10 minutes if I'm lucky, and that just feels good, even if it's not true.

Sorry for writing so much. This is also relaxing. I can talk to my GF, but it's never like having a discussion with people who share the same problem. This is the basis of mutual aid.

When the episode's end approaches (I know this because the interval between thumps or groups of thumps starts to increase), I also like to start a stopwatch to measure said intervals. Usually when it's more then 10 minutes, it's gone for good... well, until the next episode.

There is a facebook page called tonic tensor tympani syndrome are you a member of this ? Its really good and has given me alot of support when I have bad episodes.

I don't believe it's connected, in that MEM does not mean TTTS. Maybe the opposite is true, I couldn't say. If I look at the list of TTTS symptoms:

• Feeling of fullness or pressure in the ear: I don't have this.
• Otalgia (either a sharp pain or dull ache): I have dull ache sometimes, for some minutes, but I also had this during my 5-year break, and in both ears, so I don't think it's related. It could be coldness or physically playing too much with my ear canal.
• Fluttering sensation in the ear: does this mean the thumping? If so then yes, obviously.
• Dysacusis: no hearing impairment/distortion.
• Headache or neck/jaw pain: no.
• Numbness or tingling sensation of the ear, neck, or jaw: no.
• Tinnitus in the form of clicking: no.
• Muffled or distorted hearing sensation: no.
• Vertigo or imbalance: no.

TTTS seems to be associated with hyperacusis which I don't have either, nor misophonia. I mean there are sounds that I don't enjoy, like everybody I guess, but I don't feel bad or anxious because of this.

Try to breath in as soon as you recognize a starting hiccup, for me that sometimes stops the body wanting to hiccup.

I'll try this next time, thank you for the tip.

Have any of you made any connection to diet? I felt like sugary/carby foods especially in the morning made episodes more likey. In fact fasting everday till mid late afternoon seemed to help.

Hmm good for you if this helps, but I usually do not eat before mid-late afternoon anyway, so this won't help me. I've been taking more sugar lately, however. I'm still on 300-mg magnesium citrate daily (150 mg two times). I don't know if this has any effect. I could take another one to get 450 mg daily and see. People have claimed that it helped (or even healed) them, while others reported that it doesn't change anything.

Mystery.