For Those with Middle Ear Myoclonus...

For sure this is some kind of neurological issue. Especially since we all seem to have twitching in other body parts on a completely different nerve path. I don't think it's anything wrong with the actual muscles. In my particular case I'm also getting clicking and popping behind my nose and in the back of my throat as well which like I said before is some kind of Palatal myoclonus/tremor. I also get clicking noises in the both ears separate from the thumps. The clicks are annoying but I can sleep through them. The clicks are for sure caused by palatal muscles because I can make the clicks happen voluntarily and stick my thumb up against my soft pallette feel them tighten as I make them click. The thumps are far more intrusive and annoying however. Lately the nose popping thing seems to be getting worse for me. It feels like pop rocks behind your nose. It mainly happens when I'm laying in bed and whenever I change positions say from my left side to my right side and then the nose popping starts up again. This whole thing is likely related to some kind of nerve compression or some kind of pressure or lesion in the brain creating these tremors/myoclonus. The likely reason why burps trigger it is because the burps activate many nerves in the region. Burps can be weird sometimes in that I'll finish a burp and think it was safe and then 3-5 seconds later thumps will happen well after the burp was completed. I seem to be the only person I have found who is completely unaffected by yawns. Hiccups don't seem to have any effect either. Burps and anxiousness seem to be the only consistent trigger for me personally.

My shortest period between episodes ever was about 26 hours. There does seem to be something preventing an episode from happening back to back. I wonder what that mechanism is? Almost seems like the brain or nerves run out of "thump juice" and then need to recharge.

Do you guys ever find yourself getting a thump just as you are drifting to sleep and your body is disconnecting from you mind? Similar to the periods where you sometimes might feel like your falling and suddenly "catch yourself" by jerking just as you are falling asleep? Those can be incredibly annoying especially when you are wondering if it's the start of a new episode.

Have any of you recorded the thumps with your cell phone to show your doctor? I was able to hold the mic hole of my phone right up against my ear canal and it very clearly picked up the thumps (do this in a quiet room). In fact it sounded very similar to how I perceived them.

Anyway, hang in there everyone you're not alone! My wife got so tired of hearing me complain about this that I don't talk to her about it anymore and that can be really demoralizing. I know it's incredibly frustrating how little this disorder is understood. Seems like nobody anywhere knows much about it and like I said before the peer review on this is real thin. It's so rare there just isn't any interest or incentive. It would be nice to know what is really going on in there.

One thing I ask is if someone gets surgery or some other treatment and it relieves or helps their problem that they come back here and share it with the rest of us. People tend to disappear form these forums and we really need any data points you can offer. I promise to do the same. Remember many people are searching the internet and this thread does get indexed and it can help others figure out what's going on with their body especially if they are new to this.

 

I have the same issue. I recommend buying a endoscope off of Amazon and filming your self when it happens vs. attempting to get a busy ENT to see it in the office.

Endoscope here: https://www.amazon.com/gp/aw/d/B01IV0TV50/ref=cm_cr_arp_mb_bdcrb_top?ie=UTF8

My history and eardrum vibrating here:

Eardrum fluttering

Question: do any of you have consistent ear fullness?

 

Yes, maybe, that's a good theory. However when I yawn/burp/hiccup, I clearly hear my TT oscillate at a low, but tonal frequency, just like you can hear any skeletal muscle oscillate under sustained contraction when you put it close to your ear (try it with your bicep). See the attached PDF. So I feel like the TT is being under sustained contraction when yawning, hiccuping, or burping, but I absolutely don't understand why.

I might also be totally wrong and what I'm actually hearing is another muscle which is close enough to produce that distinctive low frequency tone. I can produce that exact same sound by closing the eyes, and contracting something around the jaw which seems behind my ears, but very close.

Yes this is weird. Although I can't relate to this: thumps always start immediately following the trigger. But I never know if it's a starting episode or a sporadic, isolated group of thumps. I need to wait 20-30 seconds to make sure (anxiogenic moment), sometimes up to two minutes.

I don't get hiccups. I mean maybe once every 10 years. I remember the feeling though, but I can't tell if this would start an episode. I can totally control yawns: they are not imposed by my body, and when I need to yawn/stretch, I do it more gently and it never starts an episode. Burps are much more tough to control for me as it's just air that needs to come out somehow. I have my own way of stopping them, but it results in heartburns at the end of the day (most of the times). Of course they mostly happen in the minutes following a meal. Also, not thinking about belching or focussing on something else makes them less likely, so there's something psychological with excessive belching too.

Me too, someting like 22 to 24 hours. At least when an episode stops, you know that you'll be safe for at least about a day.

That's exactly what I feel lol. I'm from a science background, and of course I know it's not that, but the big picture feels like this.

Yes! I've been having this lately, but only in the morning when I try to sleep a bit more after waking up, and only sometimes. Immediately when I "disconnect", I get a single thump and wake up, a bit panicked. I never know if it's a real one or if I started dreaming about one. My guess is that it's a real one and it's a hypnic jerk of the TT. It's frustrating. But it's not (necessarily) the start of an episode in my case, it's isolated. After 2-3 attempts, I get up and start the day. I don't get this when falling asleep at night. Thanks for sharing this part of the MEM condition.

I didn't try yet.

Yes, good to emphasize this, it's important. As a hypochondriac, I feel like I should go back to forums I read about symptoms and reassure people that it might also be benign conditions, not necessarily brain cancer, ALS, or MS. But I find that I don't do it, because my mind is elsewhere, I'm not worried anymore by those conditions/diseases. So my guess is that most people who heal and get better are so happy to get back to a normal or near-normal life that they don't care losing their time on the old forums.

 

Apologies I have been trying to work out how to reply to certain quotes and I am finding it difficult to do it on my IPhone ! Memory I am exactly the same when you mentioned the stop watch I do this and when it gets to 10 minutes I know I am in a safe zone haha !!! I feel the stop watch helps but after 20 minutes or so I stopped and accept that I am having an episode ! I don’t really get twitches round my body ! Just my ear ! Also I have had thunps every single day before ! This time last year I had hard thumps every single day for a week almost ! It would start with no trigger at all but it did eventually calm for me ! Apart from that experience I do tend to get breaks ! My myoclonus has never ever fully went away ! I had a year of not getting any attacks but I would get random thumps during the day ! Or my ear would thump every time I burped ! But no attack started ! Has anyone ever had a day where there ears have never made a noise ? My good ear on a bad day can thump every 20 minutes but just one thump ! Has anyone else ever had episodes like that ? It will go quiet for a few hours and then thump 3 to 4 times in an hour then randomly stop again ? It’s so strange and I feel like I am losing my mind at times ! I also promise to stay on this site and share my entire journey as it’s so frustrating when people leave and don’t let us know why !
What is so annoying about this condition is how it changes ! I tend to get different symptoms every 6 to 10 weeks ! Like at the moment if I burp my left ear will attack ! But I bet any money in 2 months time this will stop and I will have a new trigger like yawning ! As sometimes yawns will set my ear off and other times it won’t ! It’s all very strange and so frustrating! I also tried to record my thumps but my phone did not pick this up ! Has anyone went ear to ear with another person to see if they can hear it ? Thanks for listening to my moans !

 

Yes, I meant it helps when you feel the episode's end approaches. It confirms what you're feeling that thumps are getting scarcer.

I believe we MEM sufferers are predisposed to this. During my 5-year break I would always get this, but it never, not even once, continued as an episode.

This is why I eventually stopped caring about controlling yawns and belching. Good old times.

Yes. When I'm free, I'm completely free, except for 3-4 thumps immediately following a burp, but as I wrote above, I consider this normal for me.

For the record, the untriggered single-thump episode I was having yesterday while writing here lasted about 15 minutes. This is rare for me. I'm obviously happy that it can be so short.

 

Did anyone of you guys tried meds like Clonazepam or muscle relaxants for this condition?

 

Yes. I found it very effective for relaxing the MEMs. But can’t be taken very often.

 

Have you tried taking it for a couple of months regulary and then stop taking it? Maybe this could help reset something.

 

Thanks MEMory ! I agree with everything you say ! My right ear has not had an attack in 6 months but it does random single thumps ! Sometimes a couple times an hour but I can live with this

I have asked my doctor about muscle relaxants... I am waiting for an answer so shall let you know !

It’s nice to be able to chat about this with folk who understand !

 

Rfisher we have many similar symptoms. I first started having brain fog and headaches in early 2016. Headaches were all the time and worse with with exertion. A few months after those started I started having bad episodes of vertigo. My worst one I laid in bed and the room was spinning as if I was 10 drinks in but I was stone cold sober. Went to MRI and MRA after that and was completely normal, neurological exam completely normal as well. Then late last year I had my first episode of MEM. Had another MRI this year but it was also normal. I did notice early last year I had a lot of crackling in the back of my neck whenever I looked left to right. When the MEM started I also started having eye twitches. One eye does feel heavy at times and both eyes twitch on and off. I've had bad lumber spine for quite a while not sure if it's related. One thought was perhaps a CSF leak causing the brain to sag perhaps trigging all these neurological symptoms. I have not had a spinal tap or pressure measured/dye or anything that is normally used to diagnose CSF leaks. That's one road I haven't gone down yet but probably worth exploring despite the risks of a spinal tap. I refuse to believe that my nearly 2 years of brain fog, dizziness, and chronic headaches is unrelated to my MEM. Surely they are connected. This has been the the worst last couple of years in my life and yet every medical test shows I'm completely normal. It is incredibly frustrating.

Before this started I was a gym rat and was in the best shape of my life running 3 miles a day and lifting weights 4 days a week. Now I find exercise makes my symptoms worse and as a result I have put on weight and everyday is a struggle. Plus being a dad you have to put on a happy face to avoid putting any negative energy into your children and also not further strain the relationship with your spouse. I have been finding it incredibly mentally taxing and I am a tough and mentally disciplined person I find it really hard not to let it get to me. I find focusing one day and even one moment at a time and not worrying about the future as being critical to keeping up your mental health.

 

ZZZK - have you been tested for superior semicircular canal dehiscence? A high res CT Scan would show this and I don't believe an MRI/A would.

 

Rfisher no I never have but looking at the symptoms I don't seem to have any other than just the vertigo.

 

No. Only taken when absolutely necessary. It’s a benzo so you have to be careful. Anyway my issue is less of the thumping and more sustained contractions of MEMs that can last days. Clonazepam makes it and the thumping go away for up to a week.

 

Holy Cow! I can completely empathize with you!!! This "fluttering" noise started with me- first time ever in my life!- in the middle of the night. Woke me up...at first I thought I was hearing my heartbeat and it scared the bejesus out of me because I said to myself, "Wait...this is WAAAAY too fast for my heart to be beating!!!" Checked my carotid pulse and realized it was just a noise in my ear. So I've had it all day now and it's around 4:30 PM. After reading much, I've concluding NOTHING helpful. I have enjoyed reading all your posts, though. And I sure wish I could help you all who suffer with this. The ONLY thing I've found helpful is to open my mouth wide- when I do, the sputtering/fluttering stops. I can't obviously sit around with my mouth opened wide all the time, so I am just praying that this -WHATEVER it is- will be short-lived. I DID want to respond with regards, though, to the magnesium. I've done a lot of reading in the past re: magnesium and I take a "megadose" daily, and have for years, to naturally lower my cholesterol numbers. I used to take statins and after experiencing muscle pain, I convinced myself I might be one of the few with whom statins disagree. Anyway, so just speaking for myself, since I already take it, I don't think (at least not mine) it's related to a magnesium deficiency. I am new to this thread and don't know if I'll get an email response or what when someone else posts....I hope so, because I'd certainly like to hear from any of you if you figure this out. My wish is that you'll all be well. Regards, Wendy

 

Hi Wendy,

If you are on Facebook join this really friendly page called tonic tensor tympani syndrome ! Everyone has different symptoms but we are a great support to one another ! X

 

This does not make any sense. The second M stands for myoclonus; I guess you mean middle ear muscles?

By the way, I've been thump-free for 7 days now. Longest break since it started again two months ago. I appreciate the hiatus. I still experience myoclonus of random body muscles, but it seems less intense.

I'm still on magnesium citrate, 300 mg/day, and go to bed earlier than usual. I also stopped getting a single thump immediately when entering stage 1 NREM sleep. Taking as much sugar as usual.

It is weird because even a violent burp won't trigger a single thump. It feels like the TT is currently resistant to this, or not sensible at all to usual triggers. Other ear thumps sometimes after belching/yawning, but as of this date, it won't start an episode. Does this happen to you during breaks?

I have no illusions that it will stop for a long time, but such long breaks are comforting for the morale.

 

Yes. It makes sense in that I’m using MEM as an acronym for ‘middle ear muscles’.

I don’t know what triggers mine. A particular thought, turning my head...? It’s random but not as much as others get, thankfully.

 

Ha ha, okay then. It's confusing that MEM means two things but I'll get used to it.

 

Same for me. Some days it doesnt show up at all even if I burp/stretch/yawn, on others it will only thump a few times.

Thats just what I did. Sadly I dont see any movement of the eardrum. I am not a Doctor, but I dont think that the muscle that contracts can be the t.t. as this would automaticly result in a movement of the eardrum, right? I even believe I am able to contract the t.t. by intent. And this I can see on the camera. But when the thumps appear, its not visible. Anyone else tried this? I bought a camera for 30 bucks of amazon.

 

Any news guys?

 

Yes! I've been MEM-free for about a month today. I don't even control burps/yawns anymore, it just completely vanished. I don't feel vulnerable at all. It's hard to explain, but when I get a violent burp, I don't even get a single thump, so I'm not nervous that anything will start.

I did get two or three random single thumps, like a single, untriggered one during the day. Of course I don't care about that.

Now I'm not crazy and this might not last. I just enjoy the moment while it lasts.

What happened? I can't explain. Did I get more sleep? Did the magnesium citrate (still taking it, 300 mg/day) kick in?

 

Hey!
Just wanna say I have also started getting, for the last month or so, the clicking sensation and feeling in my throat/nose area. Mine is normally worse when walking though, feels like popping candy. It usually gets worse when going up and down the stairs and going over bumps and things too so have no idea what that is about. It sounds and feels like a dog clicker to me.

My ear thumping is usually triggered by burps or hiccups but very rarely a yawn can make it start spasming too.

I do sometimes get the odd thump when trying to sleep but weirdly sometimes I go to sleep with no thumping/spasming but it will wake me up in the night and it will start up whilst I'm sleeping. Very strange. I've had this for about 4 months now, I can be lucky sometimes and have an odd day where I don't get it, or a day where it will have a random wave of thumps after a hiccup or burp but then stops, but then I get other days where it can last the entire day or longer of these waves of thumping.

No idea if it's linked to my PET or sinus issues or any other of my ear issues or anxiety or a mix of everything but it's all quite stressful.

I will definitely report back if I find something that happens to help this.

 

I am hearing little clicks when laying down to sleep, goodness...another sound, really? Does anyone take something that works for sleeping? I surly would feel better if I could sleep for more than a couple hours.
Thank you,

 

Thats great! Ive hear of a few people where it eventually stopped after some time.
But also people that had breaks from it for several years.

For me personally it changed also in time. Last year in august-october I would get it at least 3 times a week for several hour episodes, nowdays I only get it 3-4 times a months, which I believe could be a good sign that it might fade out one day. Anyway, Im still checking out possible surgery options as I believe I would be more confortable with a little sound sensivity than this unpredictable thumping and that anxiety it creates when I get a hicup, need to yawn a lot or drank something with gas that makes me burp.
I will also go to another chiro to let him check my upper spine, maybe the issue lies there. You never know.

All the best for all of you!

 

@StephAtkings Hi Steph how are you doing lately? Thumping any better? DO you know any doctor who can do the MEM operation?

Does anyone know any doctor who can do the MEM Operation? Hope all of you are keeping well, I know the struggle. Although im just a few months in, I sometimes feel like I am about to break down. Keep getting filled with adrenaline and desparation when a click hits. Get them everyday, one click at a time mostly in the morning and night. Thank god for that, big chunk of the afternoon Im fine.

 

I realize your post is from June 17th. If you haven't already found something, Melatonin helped me during difficult times when I could not sleep for more than 2 - 3 hours a night. I started with one mg and went as high as 3mg. I took it about an hour before I wanted to go to bed. Most of the reading I've done regarding it states that it's not a good idea to take more than 3 mg. Additionally, it is not to be taken on a permanent basis.

It's good for me to know that something has already worked well for me in the past should my T and H become severe again.

That said, I wish you luck!

 

Any updates of how everyone is doing?

 

Hello everyone. I figured I'd stop by and give an update.

My MEM got much better for a period of about two years (I still got the daily thumps after every burp and yawn) but it didn't linger until this past week I feel like my ear is starting back up like it did when I first got it so of course I'm a nervous wreck and I've been having panic attacks ever since.

I hope this period won't last but the unknown can be very unsettling.

 

I had thumping in right ear on and off all day today- started a few weeks ago after not having it for 12 years- always after a yawn or stretch or hiccup etc.. I thought I was the only one with these issues- I also suffer from tinnitus and positional vertigo- I wonder if everyone with this thumping has tinnitus- when I mentioned to both ENT and GP they basically just told me not to worry but its annoying and making me so anxious- Begged GP for klonopin - ENT wouldnt give anything. No one really gets it unless they have it cause its so invisible-