For Those with Middle Ear Myoclonus...

Hi good people,
thanks for your updates @Chelles and @Jessica Moore!

So glad to hear you both had a pretty long time without any episodes!
I hope it stays like this and it doesnt get any worse!

You probably have thought about it yourselfs, but what did you do differently that it didnt start to start episodes that often anymore?

I personally was very lucky the last 8 weeks or so, today is my the 2nd time I get hour-long spasms. I was very committed to keep back burps, hiccups and wide yawns and most importantly strechting in the morning all that time now and for some reason I believe it has helped with not triggering episodes every time I yawn. Maybe,maybe it will fade out like yours did for some time.
If you have any tipps, please let us know.

_________________

Did anyone here in this forum find a cure from hicup, burping, yawning or strechting in the morning - triggered spasm in the ear?

Or did anyone see a doctor while having a spasm(-episode) who confirmed it visually or differently?

Thanks so much guys for this thread and all your participation here.

All the best!

 

There is one thing id like to add.
For me it seems that listening to "brown noise" or "white noise" very loud at the beginning of an episode is helping, so it does not staying for hours...
I also always do the valsalva at the beginning of an episode for a few times which might also be helping, as I didnt have many episodes the last 2 months.

Maybe this helps.

 

How is everyone? I can feel my symptoms presenting themselves after another 6-month break of no problems. Once again, the usual signs before I get an episode. Spasms all around legs and eyes and face. Burps causing singular thumps. Like clockwork.

 

Hello again. I've been MEM-free for more than 3 months now. I burp and yawn and everything and I don't get anything.

The only thing I did concretely was to start taking about 300 mg of magnesium citrate every day, but I have doubts that this is related anyhow because I too have a few daily involuntary muscle twitches over my whole body: eyelids, eyebrows, calves, abdomen, arms, and thenar eminences. But, thank God, no MEM, so it's annoying at the most; I have worst issues.

I see some people had long periods of relief: I'm very glad about this.

That's very interesting. I love to hear new potential solutions, even if they don't work for everybody. That's exactly why this thread (and health forums in general) is important. Assuming this works and fixes my problem (next time I have it): how in the world would I have known this without this thread? ENTs won't suggest this without some literature I guess.

 

Has anyone read this here?

https://www.karger.com/Article/Pdf/487260

 

has anyone found anything that helps? I have been recently diagnosed and am struggling to keep up with normal life.

 

Aimee how long has it been going on for?

 

@ZZZK Mine started 3 weeks ago. Looking back, I think I had a mini episode in July 2018. I had just flown to Philly (from Dallas) and I noticed severe dizziness/vertigo/headaches for 3 days (which is not usual for me) as well as thumping/muffling in my ears. But, the thumping was brief and my main symptoms were the headaches/vertigo.

Flash forward to October, one week I started getting random thumping sounds at night, particularly when I bent over. Then a few days later, they became almost constant in my left ear. The thumping wasn't consistent, and changed tempos and stopped for a few seconds, but then would resume it's cycle. Mine sounds like someone tapping a microphone. The worst part is the physical sensation though, it feels like something is thumping on top of my ear drum. If I only heard it, I don't know if it would be as miserable. My other ear has a more muffled sound, and is not nearly as constant or annoying. Mine episodes are usually during the day, about 8-12 hours, the longest was 24 hours straight. I have also noticed like many others, that mine are triggered by burping/yawning/hiccuping. Although, I have had some start without that.

I went to two ENTs and one Ontologist and all three seemed unsure what to do with me. They prescribed Klonopin and Flexeril. I had 6 thump-free days (besides the occasional thump after a burp/yawn) after taking the Flexeril, but then it started full force out of the blue.

I have also noticed that after a long episode, I have dull/achy pain in my occipital lobe area and behind my ear (also have never had that pain before this started).

I am feeling really miserable, as I am a therapist, and can't really focus on people talking when I feel/hear the thumping all day. It's also so frustrating that doctors don't seem to care to help or find out what this is. I get the sense that they think it's stressed induced, and just blame it on me, basically.

Things I am currently trying:

Amitriptyline 10 mg
Magnesium ( two kinds alternating )
Iron
Vitamin B12 shots-- I have been low on B12
Valium 5 mg

Things I am looking into:

I went to my dentist and I am getting a night guard for clenching

Chiropractor (suggestion from this Dr online:
http://hearinglosshelp.com/blog/do-i-have-tonic-tensor-tympani-syndrome-ttts/

Neurologist

I'm glad I found y'all. Thanks for reading,
Aimee

 

Aimee you are still really early into this. Give it some time. I know it totally sucks right now but it seems time does help. For many people it seems to settle down within 2-6 months. Sometimes longer. From my research the medications don't seem to help MEM much for many people. Don't get too upset with your doctors. MEM is exceptionally rare and not well understood. The peer review literature on the subject is thin as well. I met ENT's that have never even heard of it.

You're not alone. We know exactly what you are experiencing.

Things that may have helped me that I personally tried (but not way to know scientifically):

Magnesium Supplement
Vitamin C supplement
B-complex supplement
Fasting most of the day
Controlling blood sugar spikes (staying away from sweet and carby food)
Avoid caffeine and other stimulants
Learning to control burps
Avoid burp inducing food/drink ie carbonated beverages or foods you have trouble digesting.

Hang in there Aimee. If you have a really stubborn case of MEM the surgery does seem to work for many people. And even for those in which the surgery isn't completely successful it does seem to make the MEM milder and more tolerable. I would not go down that road personally however unless you've had it for at least year and exhausted all your options.

Did you read through this whole thread? It has pretty good information.

 

@ZZZK thank you for your reply.

What do you mean by fasting most of the day?

I'm getting an MRI done Friday to rule out any other causes. Mine has still been relentless. Have any of you tried acupuncture or a chiropractor?

Thanks again,
Aimee

 

Aimee I was doing intermittent fasting. I would not eat until 5pm.

I never tried acupuncture or chiro.

 

@ZZZK have you ever tried acid reflux meds?

 

Can anyone please help me. I have something similar. I have thumps in my right ear only.

Only single thumps.

Every 10 seconds but can vary, it's not rhythmic or occurring at regular intervals.

The difference is mine has never really stopped for days, since getting it a week ago.

The thumps are always there.

Occasionally I'll get them in the left ear but very rarely.

Is this still MEM? I can't seem to find a trigger to set if off.

Please help

 

@Sarah101 I’m so sorry you are dealing with this too. I know how awful it is. Soma (muscle relaxer) has helped me the most. What doctors have you been to?

 

@aimeemaire thanks so much for replying again. I've only been to a gp and he said no to muscle relaxants due to them being addictive. I also need to work which he said I wouldn't be able to due to sedative effects. Did you find the side effects to be manageable on soma? He has referred me to a ent but the wait is until next June.

 

@Sarah101 Where do you live? So you can't see an ENT until June? Could you try seeing a neurologist? Or even a dentist about TMJD?
In my experience, they are not that sedative. I am still working, although it's difficult due to the thumping, not the muscle relaxer. I had no side effects on the muscle relaxers. I was tired on Klonopin but I was taking 3 mg which is an extremely high dose. I have found that most medications stop the the thumps for a week, and then my body gets used to them and starts thumping again. I will keep you updated on if I find any long-term relief.

 

Has anyone had the surgery or tried botox?
Or know of anyone who has?

Thanks,
Aimee

 

@aimeemaire is yours getting any better or worse? How are you coping? Thinking of you.

 

@Sarah101 Mine is the same I don't really know how I am coping. Just trying to take one day at a time. I started wearing a mouth guard and I am going to physical therapy to see if that helps. How is yours? Thinking of you too.

 

@aimeemaire mine is getting pretty bad at night and really starting to hurt. I'm not coping at all.

 

@aimeemaire has yours improved yet?

 

Stretching makes it worse?

 

@Sarah101 Mine may be improving slightly. I've noticed the episodes have less thumping (there is more space between each thump) and that if an episode starts, it's lasting 1-2 days intermittently instead of 3-4 constant. I also finally found a doctor who has heard of thumping triggered by burping/yawning, and who has treated it before. She prescribed me Robinul Forte and Histamine Phosphate. I am also starting allergy treatment. What are your updates? I hope yours is improving.

 

Hi everyone. New sufferer here. I started developing thumping in my right ear out of the blue a month ago. The thumping is brought on by human voices in person (not through speaker or devices) in a quiet/enclosed surrounding and most of the time when the sound comes from my right. It stops thumping only when there’s no more sound. I have been finding it difficult to cope with it. Every time someone speaks to me or I hear the conversation, my heart would just sink as my ear would go crazy. I have been to the ENT and was prescribed with corticosteroids but it was of no help. He just told me to observe it for next few months without any medication. I’m going to try out the magnesium tablets. Anybody with similar trigger like mine (by human voice) as I see here most of the thumps start from burping/yawning? Also has anyone tried acupuncture and does it help? I feel distressed/kinda depressed over this thumping, how do you all cope with anxiety and stress?

 

Can MEM cause your hearing to be worse in the affected ear? I'm not talking about the thumping/distortion that can occur, but rather your regular hearing itself.

My MEM in my right ear is causing me to not hear some high frequencies as well as my left. In some cases, I don't hear the sounds in those frequencies below certain volumes.

 

Hey guys, I am new to this forum. For the past two weeks, I have been suffering from this thumping noise in my right ear usually triggered by yawning. Although right now I am getting it on and off lasting for like a few second. In the beginning I kept thinking it is something related to pulsatile tinnitus (I was so paranoid and googling crazy symptoms) but then I realized it feels more like a twitching feeling as some of you described like a microphone tapping noise. I get this feeling when I first wake up until around noon. And then at night again when I am getting tired and yawning. I haven't made an appointment with an ENT but just want to see if what remedies there are. I read that taking magnesium citrate can help with this feeling. How many mg should I take and other advice or remedies that can help with this feeling? Thank you!

Also, want to mention that I am so happy to find this forum because this whole time I am thinking like it must be pulsatile tinnitus but then i was thinking it doesn't sync with my heartbeat. and often time it triggered by yawning, i thought I was going crazy because I couldn't find anything on google about having this feeling after yawning then I realized it wasn't a pulsing and it's more of like twitching thumping feeling.

 

Hello everyone,
I wanted to give an update for old and new members.

I have had only mild thumping (1-2 thumps every few days or so) for the past month and a half. I previously would have thumping episodes for 24-72 hours since October 2018. I find that my thumping now is triggered by diet (salt) and stress, and eating/burping. I also notice a thump every now and then when my face or neck is clenched or I move my neck in a fast motion.

I believe the treatments that are helping are:

Robinul Forte (dilates blood vessels in inner ear)
Histamine Phosphate (compounded by my neurotologist-- increase blood flow to inner ear)
Magnesium L Threonate 2000 mg
Magnesium Glycinate 200 mg

I am also being treated for allergies (using the drops) and am limiting my salt/sugar intake. I am also wearing a nightguard at night to help with clenching my jaw, which I think is definitely related.

I am so sorry to all of you who are suffering with MEM. This is truly a terrible condition that is minimized by most of the doctors I have seen. I am praying for you all.

 

Hello friends! I'm back!

I'm just coming back here to tell you that I've been MEM-free for around 9 months now. Not a single episode as such; maybe 4-5 random single thumps during this whole period.

I'm not saying this to brag, but to give a follow-up showing a positive outcome. People complain much more online, and rightly so, than they write that everything's good.

How did I treat my MEM? By doing absolutely nothing..! One day I had an episode and it was the last one, 9 months ago.

So don't give up hope! It can go away naturally.

I still read all the new posts of this thread to keep myself abreast with new solutions and research/papers.

Till next time, have a good one.

 

That's great news! I don't know if you had already stated it, but how did you have MEM in the first place? And was it with T as well?

 

Have a look at this thread's history, I have a few extensive posts explaining my situation.

I didn't see any increase in my T, which is bilateral and so weak it's not annoying at all (unless I'm in an anechoic chamber), when I started having MEM.