For Those with Middle Ear Myoclonus...

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....

 

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

 

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.

 

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.

 

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.

 

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!

 

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.

 

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

 

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.

 

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.

 

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!

 

Where did everybody go? Did everyone suddenly get better? Geez I hope so!

 

Nope, still suffering from MEM! There’s a new MEM facebook support group that started a couple of months ago, there’s a lot of discussion on that - https://www.facebook.com/groups/3477917998900326/?ref=share

 

Hey folks, new here. Surprised to find other people with this really bizarre and infuriating issue.
I'll keep this post brief as I'm unsure if this thread is still active.
Basically, first encountered this inner ear thumping/tapping/twitching back in 2011. Brought on by yawning if I recall correctly, as well as upon awakening while stretching. Ear specialist was no help. I just had to get used to preventing or reducing my yawns.
It eventually went away completely by itself and I got confidence in yawning normally again. It did come back a year or so later but it was a much more brief episode. So fast forward to now, from memory, the only other time I've had prolonged episodes (longer than a day) was about two years ago.
So the other week it was brought on by burping, which I believe is a new one for me. It happened again a few days later brought on my waking stretching in the early morning which made it impossible to go back to sleep. That lasted for most of the day. So at that point I was completely anxious about it being a regular thing and not a one off day like I've had back in April. So not only am I suppressing my yawns, but now I'm not doing those silent burps where your ears flutter, instead I'm forcing out belches, which is charming... Unfortunately, the other night I let a silent burp slip and the thumps were around to stay for the rest of the night. I try extra hard to prevent the thumps happening towards the night because it's literally impossible to try and fall asleep with the feeling of someone tapping the inside of your head. Fortunately I had sleeping pills to help but ultimately I'd trade in one of my limbs to not have to worry about myoclonic BS ever again. I also have myoclonus/hypnic jerks (which was persistent last night) which is extremely bothersome and having this in tandem with MEM makes life a playground for my anxiety.

So if anyone is actually reading this, are there any techniques you do to help subdue the thumping? Especially if it's lingering around til bedtime. Once it has begun, I stop trying to suppress yawns or other things that might trigger it. Do you think by doing this is it makes it worse or no difference? I thought maybe if I did the opposite and do deep yawns and stretches it would kind of force it away faster, but no such luck there...
Ear plugs didn't really help. I think sleeping on my arm did help but not completely sure as it could have just been a gap in the episode. Regardless, that position is extremely uncomfortable... If only there were a substitute I could tie to the side of my head.

 

Hello everybody -

I empathize with all of your suffering from MEM or whatever may be causing pulsations within the ears. I have had intermittent throbbing in both ears for most of my adult life. It ranges from a few bumps every now and then to every few seconds for days on end. I have mentioned it to a few doctors here and there but they have always said my ears are normal and brush off my complaints.

Stress seems to be the primary driver for my worst episodes. I never really found anything that helped with my episodes, despite following many recommendations from internet research, until a few years ago.

I was talking with a friend over dinner about why I seemed to have trouble meeting and making new friends. He offhandedly suggested perhaps it was due to my "RDF". Resting Dick Face, he clarified. I had to admit that I generally comport myself with a rather dour expression on my face when in social situations where I don't feel comfortable. I took this revelation to heart and began to become aware of tension in my face (and body in general) and got into the habit of frequently consciously assessing that tension and deliberately relaxing, especially my facial, neck and shoulder muscles.

Since embarking on that fairly simple endeavor, my middle ear spasms are few and far between (with one notable exception discussed below). When I feel my face is all scrunched up and muscles in my neck and shoulders are tense, I can sense my middle ear(s) ramping up to start bumping, so I take a few deep breaths and basically meditate for a spell. This mindfulness of stress and tension and deliberate efforts to avoid as much stress as possible and practice facial relaxation techniques have resulted in substantial control, if not resolution, of this problem, for me.

On an interesting and peculiar note - there is one action which unfailingly causes my left ear to pulse and I was wondering if anyone here has experienced the same.

When I shower, I rinse between my buttocks with an extension hose which applies a fairly forceful stream of water to my anus, causing my left ear to pulsate wildly until the stream is stopped. Just for a few seconds. Sorry for the mental image, but I haven't encountered any other reports of this MEM nuance. Perhaps people are just too embarrassed to share. Or maybe it's just me.

Bidet users - do any of you grok?

 

@MartyJ We are all on the facebook group: https://www.facebook.com/groups/3477917998900326/

I think the things that have helped me are a night guard, prozac (not sure on this because it can actually contribute to teeth clenching) robinul forte, histamine phosphate, xanax, klonopin, and therapy.

 

Hello everyone!

First of all, I can't tell you how happy I am to find all of you, so it doesn't make me feel alone with this problem.

The thing is I am not sure what exactly I have, because I went once to my ENT who always says that all my ear problems are because of my allergic rhinitis (I have hay fever in May and June every year, I live in Lithuania).
I think there is some kind of truth in this, this allergy adds up, but I know it's much more than this. Besides this doctor, I didn't go anywhere else, I kind of got used to it... also, I am a bit scared of finding out it's something serious... but in the end of this month I will go again to the ENT.

So my story is that in 2013 October I had a long-haul flight. Just before it I caught a cold, and while flying it turned into a runny nose... when I was landing, I experienced a barotrauma. My ears were blocked for 1-2 weeks but they unblocked.
Until this, I had never had any ear problems.

Then after 6 months, again I had a flight, and it was a period when I had a hay fever with itchy runny nose, and again my ears got blocked, but then unblocked quite quickly within a few days.

Then, after 4 months I had my wisdom tooth extracted (on the left), and my right ear was blocked for a week.

And then after 5 months, I got sick, I had a sore throat for a day which went to my ears. It was really annoying, because my head fell full, I even had a slight vertigo, dizziness, and just couldn't do anything. After 2 weeks... it got better BUT NEVER AS IT WAS BEFORE. Since this time, 2015 March (almost 5 years now) my ears are just not ok.

Also, I need to mention that just before this sickness, I went to the party with my colleagues, and well, I got poisoned a bit , and vomited... and somehow I think it has to do something with acids, acid reflux... or like you say the BURPING, YAWNING or HICCUP thing... I remember since 2015 March until June 2016 I always felt a lump in my throat and something was not right. But it ended in June 2016 when I got pregnant (it's strange, because usually these things get worse while you are pregnant)... But I mean my situation with this acid reflux or whatever ended for quite many years (until this year), but ear problems never ended.

So if I am not sick, if there's no flight and I just feel healthy in general, still I feel like my both ears (but left is more) are kind of blocked or clogged, it looks like some air is stuck there. I do the Valsalva method (which I know is not good) quite often, because every time I feel this fullness, I have a hope that maybe with the Valsalve method I will be able to push it out. But I feel that this air touches my eardrum (from the middle ear side), and it stops...and when I swallow, it just pops back in... And I do this method again and again ... and I think it might have damaged by Tensor Tympanis muscle... because I feel this twitching/vibrating/pulsating sensations in my ears...
Also I am a very sensitive person, I feel all the minor pains in my body; I also have health anxiety and in general I worry about everything. I also have Cervical Spondylosis (so my shoulder blades, upper back and neck are always tense). By the way I am now 33 years old.

This year September I got poisoned, and so I vomited; and then again in October I caught a stomach bug from my daughter and I vomitted again. And I feel that it somehow "woke" my ears problem (even though it was never gone)... So I am sure it's related.

My other sympton which is not very often but it happens a few times per year, is that just before falling asleep I might hear the sound of something like a crash cymbals.

So guys, I really don't know what it is, but I think it's one of these things, maybe a few of them or maybe all of them: the barotraumas; allergic rhinitis; acid reflux; cervical spondylosis; anxiety/tension; the use of q-tips (I don't use them anymore, but all my life I was using them and quite aggressively because my ear canals itch and it's quite pleasant to put a q-tip and just scratch a bit); TMJ (a few months ago my doctor told me my teeth are a bit worn down so I had to get night guards for my teeth; so maybe my jaw is causing this)....

But as I read all your comments, I think more or less we all have of the same (very strange) thing in our ears.

There are days when I don't notice it and forget about it, but there are days when this ear pressure and eardrum vibrating moments just make me feel so nervous. Also, when I swallow, burp, hiccup and yawn, sometimes it makes me feel that it will be better, but in the end it just irritates all the ear space, and this heavy fullness is constantly there... So yes it's a bit depressing, but I am glad my hearing is good, and it's just nice to know you're not alone.

Thank you everyone for your comments and for your detailed descriptions of the problem!

 

Have the same. Happy to find this. One year for me. Average once a week. Always triggered by burp or yawn and usually lasts 3-4 hours though some have been more than a day.

Now I am also into a lot of spiritual and alternative healing and knowing my journey I think is important to mention what I think is the main trigger for this from a psychological body mind connection angle and I am pretty sure it is due to repressed anger and emotion. As we know western medicine is great at treating the presentation of illness and disease as a physical thing but other methods aim to find the root lifestyle, energetic cause that creates eventually a physical illness. I have noticed pretty soon after episodes or when I have them I am frustrated or rushing or angry. Also this would connect to breathing quickly and needing to yawn. I really believe the body sends us signals of deeper issues, I mean it is our creation — what we think, do, put into it literally creates it. I notice also after yoga and meditation usually it gets less intense. When I get it the feeling is very similar to that high blood pressure anger adrenaline symptom but a learnt way to push it down instead of allowing it to show. I wonder if anyone here is aware they repress anger as an emotion and whether this is a sign from the body to release it?

 

My MEM came on suddenly in 2018. I have similar symptoms to most of those described here. It feel like someone is playing a bass drum on my left eardrum, and after reading about it from a thread here, I found I could stop it by putting my finger in my ear. I was having at least a hundred "strikes" a day, and I felt it was driving me insane. I also felt the fullness referenced by others. However, a burp or yawn does not precede or trigger my attacks. Like most of you, I went to an ENT, who prescribed muscle relaxers and Xanax, neither of which helped. Surgery then came up as the last ditch option, which I was not willing to agree to...yet.

I was reading the information on one of my prescriptions, buPROPion, and noticed that one of the side effects listed was "hearing disorders." I stopped taking the medication immediately, and just as immediately, MY MEM SYMPTOMS STOPPED! I have not had a single recurrence since!

After a little investigation, I found an article in Tinnitus Today by Neil Bauman, Ph.D., who wrote the book Ototoxic Drugs Exposed, which describes the ear damaging side effects of 447 drugs and 29 chemicals known to trigger tinnitus. According to Dr. Bauman, most drug classes have tinnitus-causing drugs sprinkled throughout, including antibiotics, pain killers, anti-anxiety and anti-depression drugs, and blood pressure controlling medications, to name a few. While the tinnitus may appear as a continuous high-pitched sound in both ears, certain drugs produce distinctive sounds, including a sound like "blowing." Depending on the type of drug, the tinnitus may or may not be permanent. "The good news is that tinnitus resulting from taking such drugs is often temporary and goes away in a few days to a few weeks after you stop taking the drug," he says. In my case, the horrible bass drum went away almost immediately!

I still have continuous high-pitched tinnitus in both ears, which my doctor says is probably caused by high frequency hearing loss, but I am going to look at every medication I am taking for possible ear-related side effects. I hope this information helps at least some of you find the same relief I did.

 

I'm new to this forum, but I would like to share what has been going on with me. My MEM came on suddenly in 2018. I have similar symptoms to some of those described here. It feel like someone is hitting a bass drum on my left eardrum. After reading about it from a thread here, I found I could stop the noise temporarily by putting my finger in my ear. I was having at least a hundred "strikes" a day, and I felt it was driving me insane. I also felt the fullness referenced by others. However, a burp or yawn does not precede or trigger my attacks. Like most of you, I went to an ENT, who prescribed muscle relaxers and Xanax, neither of which helped. Surgery then came up as the last ditch option, which I was not willing to agree to...yet.

I was reading the information on one of my prescriptions, buPROPion, and noticed that one of the side effects listed was "hearing disorders." I stopped taking the medication immediately, and just as immediately, MY MEM SYMPTOMS STOPPED! I have not had a single recurrence since!

After a little investigation, I found an article in Tinnitus Today by Neil Bauman, Ph.D., who wrote the book Ototoxic Drugs Exposed, which describes the ear damaging side effects of 447 drugs and 29 chemicals known to trigger tinnitus. According to Dr. Bauman, most drug classes have tinnitus-causing drugs sprinkled throughout, including antibiotics, pain killers, anti-anxiety and anti-depression drugs, and blood pressure controlling medications, to name a few. While the tinnitus may appear as a continuous high-pitched sound in both ears, certain drugs produce distinctive sounds, including a sound like "blowing." Depending on the type of drug, the tinnitus may or may not be permanent. "The good news is that tinnitus resulting from taking such drugs is often temporary and goes away in a few days to a few weeks after you stop taking the drug," he says. In my case, the horrible bass drum went away almost immediately!

I still have continuous high-pitched tinnitus in both ears, which my doctor says is probably caused by high frequency hearing loss, but I am going to look at every medication I am taking for possible ear-related side effects. I hope this information helps at least some of you find some relief.

 

Late reply. Wow, this could be huge for me. I am on bupropion for anxiety and have been so for over a year, with my ear symptoms starting just a few weeks ago, so I am not sure they are related in my case, but its reassuring I have something to try.

This thread is so eye opening, the symptoms I have been feeling are word for word described throughout this thread, I haven't been officially diagnosed (going to see an ENT in just a couple weeks) but MEM seems to fit perfectly. The "pulsing" in the ear is almost exclusively triggered by burping (the kind of burps that almost get stuck in the throat and are almost like a burp/hiccup hybrid) and seem to happen in the mornings more often than any other time of day. Yawns don't seem to trigger it in my case. It "came out of the blue" one morning on a burp, I hadn't been sick or dealing with a runny nose in the weeks leading up to it. My GP said it was most likely eustachian tube dysfunction and told me to take Sudafed for 5 days, but unfortunately I am a few days past that and I don't notice any markable improvements. I have some random periods of autophony as well, which is kinda scary every time it happens, but it never lasts longer than 5-10 minutes before going away. Anyways, I am pretty scared I somehow ended up with a rare ear disorder that will be with me until the end of my days, and I am only in my 20's. My anxiety and depression have gotten out of control the last couple of years and it seems every month its some new medical issue I have to deal with. If anyone ends up seeing this, good luck on your journey!

 

This just started for me, although I suspect I have had it occasionally in the past and just noticed it more due to being in social isolation during COVID rules. Female, 50s. I’m a masters rower and I find that 10+ minutes of moderate exercise (rowing machine, heart rate 130-140, or 65-70% max if you use that) works every time. Not helpful when I get it in the middle of the night though! Sleeping with a fan on also helps.

Next trying meditation focused on tension in the throat area, because it’s accompanied by the lump in the throat feeling that others describe. Trying to recognize the feeling and other feelings that arise (fear of the sensation, trying to avoid the sensation), then relax and let go.

Over many years I’ve had different sensations that I associate with anxiety, and I consider this to be just another weird thing that happens. Others have been heart palpitations, difficulty swallowing, sleep issues. After trying therapy and meds at various times, what has worked for me with all other issues is exercise and meditation. Missing my passion - rowing! Outdoors! With friends! - is the likely cause of stress for me right now.

Grateful for the information shared by others here!

 

I joined for the sole purpose of sharing what I believe is the cure for this pulsing or thumping sound inside the ear. I know cure is a strong word but in my opinion it is. I noticed there a link to another forum talking about this so I will post this there as well. First I’ll describe my experience so you can make sure you’re even experiencing the same thing as me.

About a year ago, out of nowhere I felt a couple of weird thuds in my left ear. It felt like it was just a pulse in my ear. Totally normal so I ignored it. But then over the next few days I noticed it was happening a lot. And I noticed that it wasn’t pulse-like in its intervals. It was 2 or 3 quick thuds that were faster than a pulse. Someone here described it as someone tapping a live microphone with their finger and that’s exactly what it sounded like. Then one day it started doing it every 20 seconds or so. Like clockwork it would be pop pop and stop. 20 seconds later again. I started keeping my finger on my actual pulse and confirmed that it wasn’t timing with my heartbeat at all. It was just random thuds. I started taking long walks for exercise but that didn’t help. It started to get maddening. So I researched it and all I could find was tinnitus talk. Ringing in ears etc. This wasn’t that. This was the sound of random pulses of like blood or a heartbeat but in my ear. If I yawned to burped or tried to clear my ears by popping them it would pulse.

Then one night I was laying in bed watching tv and I reached over to grab my water over to my left on the nightstand. My ear pulsed as I did that. I drank my water and put it back. As I put it back my ear pulsed again. I thought hmm, so I make the motion over again and it popped again. Thud thud went the pulse each time I reached over. I realized I was able to activate this pulse by doing this. But why? After thinking about it, I realized that when I reached over, I was compressing my neck muscles on the left side so I thought what if compression of something in my neck is triggering this? I thought about it and realized that lately I had been sitting in ways where the left side of my neck was kinking. Slouched back on a couch leaning to the left, that sort of thing. Looking up at a tv or phone etc. So I sat up and decided I would try to do the exact opposite. Instead of compress that muscle I would stretch that muscle manually. So I started rubbing my neck in a very specific spot in a very specific way. I focused on the neck muscle that runs from top to bottom on the rear left part of my neck. It runs from where your shoulder meets your neck straight up to the back of your head where your hairline in the back is. I’m trying to explain exactly where because this is important. It’s not the actual left side of your neck or the back of your neck. It’s in between. It’s the corner. So looking down at your head from the ceiling, if your nose is 12 o’clock, it would be the 7&8 o’clock position. Starts between where your shoulder meets your back and goes up to the behind your head where your rear hairline is, a coupe inches behind your ear. Basically the rear left corner of your neck. Top to bottom. About a 2 inch wide strip of muscle. First I stretched that muscle as far as I could by moving my head all the way to the front right and holding it there. Think of it as trying to touch your right ear with the front of your right shoulder. Stretch like that and hold. Then I pressed on that rear left neck muscle with my hand and with forceful traction I started to rub the muscle from the center upward and then from the center downward. As if I’m trying to elongate it. This is a bit odd to describe so basically picture trying to stretch that muscle with your hand but since you can’t actually hold the muscle and pull it apart, you can only push it apart by rubbing it in opposite directions. Start in the middle and rub upward, but hard, as if you’re trying to force the blood out of your muscles by rubbing it out. Then do the same thing on the other end of your muscle by rubbing it downward toward your shoulder/back. Essentially try rub it apart. But very hard. It has to sort of hurt. Like the next day your neck is sore back there. I did that for about 20 minutes and then I waited for a pulse. The pulse never came. For over a year. It literally disappeared that night for good. The next day I maintained the stretching however. I didn’t stop that night. I rubbed that rear neck muscle up and down all day. For a few days. I wasn’t taking any chances. It hurt too. I could not move my head around fully for about a day but that’s what is needed. And of course I made sure to never kink my neck like that again. I changed the way I lay down and the way I sat. Watched tv or on my phone. Kept my neck stretched the opposite way. I even forced myself to sleep with my rear neck muscle stretched not compressed, for a few nights. But that pulse disappeared.

Fast forward to about a week ago. I did something that forced my neck to be kinked in that position again. Picture crouching down on the floor hands and knees trying to peer under a couch but for like a good half hour. Your neck gets totally compressed in the back quadrants. When I was done I sat up and suddenly thud thud thud like a machine gun in my ear. The pulsing was back. I thought ok it should go away it was only because I was crouched like that. However it did not. It kept happening at random times throughout the day and night just like it was a year ago. A couple days of that and I decided I would do that stretching again. I started rubbing upward and downward stretching that muscle in opposite directions with heavy pressure. Painful level of pressure. Did that for a good 15 minutes and ever since then, no pulsing. Again.

This pulsing in the ear, it’s physical. There’s something inside the neck-meets-head part of our body where if certain nerves or ligaments get compressed, they trigger this thing. Maybe it’s blood vessels or who knows what but it’s in there that causes it and it can be from the most seemingly harmless posture that causes that muscle to compress. I urge anyone who is experiencing this to try this rubbing exercise. It costs nothing and it may solve it for you. And think about any posture you do that causes your neck to kink and compress back there and stop that. For me, the stretching worked right away because the damage I had caused was recent. I can imagine that if you’ve been experiencing this for years, it may not immediately work, but if it doesn’t work right away I would not give up. It may take more time to undue years of posture related muscle damage. Maybe seek the help of a friend or a masseuse to get in there and work that muscle apart but I believe that doing that is key to getting rid of it. If my directions on how to rub were not clear to anyone I have no problem uploading a sketch of exactly where and how to rub. And of course, my pulse was the left ear, hence rubbing the left rear neck muscle. If your pulsing is happening in your right ear, then rub the right side of your neck instead.

So I’ll leave this here and hopefully this helps somebody out there to get rid of this problem for good.

 

@Justwanttoshare - this sounds so helpful and I am getting desperate. Noticing your thread as so recent has me hopeful you’ll see this too. I am wondering if you’d be willing to help me understand the location of this stretch and rub with a sketch? Thanks so much for such a thorough post.

 

I have a really easy way to block out MEM spasms without using your finger.

I have had middle ear myoclonous for several years, and it got really bad in 2020. I had a surgery in my right ear which was very successful, and a surgery in my left ear which didn't work at all. You have about a 2/3 chance of it working when you get the surgery, that's what my doctor told me.

So, you need to go to Walmart, and get some Mack's silicone earplugs. The big gray kind that make an airtight seal to your ear. When you are having an episode, put one in your ear, and make sure it forms a completely airtight seal. This always blocks out the tensor tympani spasms for me, and I usually just carry around a pack of the earplugs with me wherever I go.

I hope this helps you all, and you'll be in my prayers.

 

I am close to booking a surgery with Professor Manohar Bance for Middle Ear Myoclonus. I had an online consultation last week where he diagnosed me with MEM. Waiting to hear when I might have an appointment.

Anyway, here is my story that I sent to him in advance of my consultation. Hope to get your thoughts and advice. Thanks for reading.

My ear issues:

I believe that I have middle ear myoclonus which began in May 2010 and continues to the present day. The main triggers now are yawning, burping, hiccuping and bearing down. It has severely affected my quality of life and I am desperate to hopefully find a solution to this problem. It sounds like a thumping or drumming noise inside my ear which is not in sync with my heartbeat and can last for a few seconds, to a few minutes or many hours. It means that I cannot concentrate on my daily activities, affects my social interactions with others and has severely affected my mental health. The only thing that can immediately stop it from happening is if I put a finger deep into my ear but as soon as I take it out again, it will start spasming again (ear plugs do not work for me). I have researched my condition for a while now and I was not sure whether it was pulsatile tinnitus or eustachian tube dysfunction. It is only recently that I have found that my symptoms seem to correspond with MEM. I have read Professor Bance's articles on this condition in the hope of getting some help, as he describes what I have been experiencing for so long.

I am outlining my history below (this has predominantly affected my right ear, but I have had it in my left ear too more rarely):

May 2010 - first experienced the condition spontaneously while working in a call centre. It probably happened for a few minutes for a few days each then just disappeared.

October 2010 to December 2010 - this was a lot more severe where it was happening each day spontaneously without trigger for hours on end and it was really loud. I was referred to an ENT at the Royal National Throat, Nose and Ear Hospital. I cannot remember the ENT's name but when I explained my symptoms, she looked in my ear and just said that it was tinnitus and there was nothing that can be done about it. Eventually the symptoms stopped by themselves.

October 2011 to December 2011 - I had a similarly long period of MEM as above. I visited Dr Azhar Shaida at the Harley Street ENT clinic who made the same observations as the previous ENT to say that it was simply tinnitus. Again, the MEM eventually resolved itself.

May 2012 - I had one day of random MEM contractions.

December 2013 to May 2015 - Regular MEM most days without trigger. I visited Dr Gerald Brookes at the Harley Street ENT Clinic in March 2014 who ran tests and advised that it may be due to my eustachian tube. He recommended grommets, but I did not proceed with the grommet insertion due to financial constraints. Eventually the MEM thankfully finally resolved after a very long time of suffering. I was in a relationship during this time and it had a very negative impact on that and my quality in life in general.

December 2017 to April 2018 - The MEM again started happening spontaneously and regularly out of nowhere. It badly affected me in my new job at the time where I was unable to function properly. I visited an ENT called David Bowdler who was unfortunately not helpful in diagnosing my condition and passed it off as tinnitus. I researched online and came across that the symptoms could be related to my neck so I started stretching and eventually the MEM passed, although that could be coincidental.

October 2018 to the present - I have consistently been able to trigger my MEM spasms in my right ear through the triggers mentioned above. Sometimes it is much more sensitive than other times. I often have to suppress yawns and burps otherwise I can be dealing with the spasms again and again. It makes me feel fearful that my quality of life is going to get worse, because I never know if and when the MEM will dissipate when it occurs again due to triggers.

 

Hi everyone, I realize this is a very old thread. How are you guys doing today? Any luck?

I’ve read all of the posts and I am basically having all the same symptoms as most of you, with it getting worse from burping etc. I have jaw and neck issues, that I’m unfortunately not able to fix due to other illnesses. I have acid reflux.

My MEM started some weeks ago, it is constant and keeps me awake all night long. I suffer a lot but this condition is not very well known in Sweden where I live.

Hoping to hear more success stories and get some tips <3

 

Hey everyone. I haven’t been here in years but like you, I suffer from MEM. It started back in 2015 and it was so bad I was suicidal at one point.

The only thing that helped me sleep was sleeping with an earplug, kind of like if I was sticking my finger in my ear.

I suffered for about a year and then all of a sudden it went away for about 5 years. Unfortunately, it has come back and I’m devastated.

However, I think I know the cause for mine - I don’t want to panic anyone here thinking it’s the same for them - I was diagnosed with multiple sclerosis a few years ago and my doctor seems to think that’s what’s affecting the muscles inside my ears.

I can’t wait to get relief again. This is devastating for me.

 

Have you considered surgery @Chelles?

 

@sdotosull, I did in the past. I went to a doctor in Philadelphia but since mine is caused by MS I don’t think surgery would help me.

How about you?