Recently Developed MEM (Middle Ear Myoclonus) Which Is Ruining My Life — Tinnitus for Years

[NYCGuy]

Stupid question, but does cutting of these muscles cause deafness?

Never heard anybody going deaf. You need a doctor that uses laser. The old school surgery via the ear drum and using blades didn't work that great.

The main risk is hyperacusis. Dr. Santos said some people acquired slight sensitivity to loud noises but for a few it was worse and had a big impact on social life.

 

[Óscar PP]

Did Mirtazapine made the MEM disappear? Did you try to stop taking it and see if the spasms are gone?

The reason I developed MEM or TTTS wasn't Mirtazapine, it was COVID-19 induced ME/CFS.

If anything, Mirtazapine only helped reduce it because better sleep ALWAYS results in better health overall.

 

[Forever hopeful]

My name is Emma and I live in Sweden. I'm new here and thought I'd say hi. I've had ringing in my ears since 2016 which can be tough at times. But just recently I've developed MEM, which is honestly ruining my life and sleep. Very little is known about this condition in my country.

So a bit about me: I have a neck injury, acid reflux, TMJ and am under a lot of stress. I guess all of these things could trigger/cause especially MEM? Yawning and burping always triggers an episode, and talking, but I overall have a constant "thumping" in my ears that never goes away.

I've also been on Diazepam (which doesn't seem to do much for my MEM), Omeprazole and Zolpidem for quite some time. Just thought I'd mention that. I also take Co-Codamol for back pain. And I've taken Magnesium supplements for months.

Hoping to make some friends here and that some day we'll know what's behind, and how to treat these awful symptoms!

Regards,
Emma

How are you doing?

 

[Forever hopeful]

They cut both middle ear muscles. Surgery takes around 1 hour and you can go home the same day. Recovery takes a week or two. They cut both tensor tympani and stapedius muscles.

Very, very important to find the doctors that use laser and don't go through the ear drum; it is less invasive surgery and the laser makes sure the muscles don't get re-attached. Most of the people who undergo the surgery with a blade, their muscles often re-attach and symptoms return.

I recently developed the rare and annoying condition.

I hope you have seen some improvement and that Dr. Santos was correct. I live in Boston and am considering seeing him. I'm sure he'll tell me the same thing he told you. I was slightly relieved by his comment to you that for most people it goes away. I'm in a very stressful, anxious time in my life and perhaps that's what brought it on. However, I had had a whole lot of anxiety and stress in my life before and I never had this happen.

Isn't tinnitus enough? Now I have to deal with this and the added anxiety of worrying when is it going to come back and how long is it going to last, is it going to be while I'm in the middle of a meeting at work? Is it going to prevent me from working?

Someone on here noted that there doesn't seem to be a lot of people posting about this condition. I wonder if that's because, apart from the rarity of this condition, that a lot of people do get better on their own and of course they're not going to post about it. I guess I can hope that's the case.

I hope you've seen some improvement.

 

[AnthonyMcDonald]

If only anxiety and stress were my biggest issues in life lol

 

[Jupiterman]

I have had fluttering in one ear since June 2022.

It was intermittent and eased off gradually, I barely noticed the changes.

At its worst, it would rage for up to an hour, perhaps upto four times a day.

Gradually over the months, the length of time it fluttered has reduced. Now it occurs every two or three days and lasts a few seconds.

Sometimes I can 'sense' it trying to start but it fails, as if it can't muster the energy. Clearly healing and calming of the nerve/muscle has taken place, albeit taking 8 months to get to the point I am at now.

My tinnitus bothers me 100x more than my eardrum fluttering. I guess that's because I can tell easily that the MEM is fading, though of course I didn't realise this till at least after August 2022.

 

[Forever hopeful]

I have had fluttering in one ear since June 2022.

It was intermittent and eased off gradually, I barely noticed the changes.

At its worst, it would rage for up to an hour, perhaps upto four times a day.

Gradually over the months, the length of time it fluttered has reduced. Now it occurs every two or three days and lasts a few seconds.

Sometimes I can 'sense' it trying to start but it fails, as if it can't muster the energy. Clearly healing and calming of the nerve/muscle has taken place, albeit taking 8 months to get to the point I am at now.

My tinnitus bothers me 100x more than my eardrum fluttering. I guess that's because I can tell easily that the MEM is fading, though of course I didn't realise this till at least after August 2022.

Thank you for your response. Did you do anything to improve it? Medication etc.? Do you have any idea of the cause? Stress?

 

[Jupiterman]

Did you do anything to improve it? Medication etc.? Do you have any idea of the cause? Stress?

It was two noise exposures followed by ear syringing that gave me tinnitus. The ear fluttering followed.

When I realised I had tinnitus that wasn't going away, I became very stressed; that's around the time my ear drum spasming started.

I took supplements like B12, Zinc, Magnesium for a long while too. Not sure if any of these helped.

At its worst; I found it a little ticklish and amusing: I honestly didn't care one iota about it. On the other hand, my tinnitus bothered me a A LOT - and still does.

Perhaps my carefree attitude towards the fluttering helped take away its oomph?

Even today, for a few seconds I could sense my eardrum going into a sort of 'trance' like state, like the fluttering was about to start. But it didn't, and hasn't done so for weeks, and my eardrum quickly relaxed again.

For me, it was a very slow thing to go away (as everything with the ear is) and I guess it still isn't fully away yet as I still sense my eardrum tensing, ready to go but it can't, so gives up. I suspect that this will eventually stop too, probably in a couple of months.

I think you stand a much better chance of the fluttering going away than your tinnitus. Just give it time and try to relax about it.

 

[Forever hopeful]

It was two noise exposures followed by ear syringing that gave me tinnitus. The ear fluttering followed.

When I realised I had tinnitus that wasn't going away, I became very stressed; that's around the time my ear drum spasming started.

I took supplements like B12, Zinc, Magnesium for a long while too. Not sure if any of these helped.

At its worst; I found it a little ticklish and amusing: I honestly didn't care one iota about it. On the other hand, my tinnitus bothered me a A LOT - and still does.

Perhaps my carefree attitude towards the fluttering helped take away its oomph?

Even today, for a few seconds I could sense my eardrum going into a sort of 'trance' like state, like the fluttering was about to start. But it didn't, and hasn't done so for weeks, and my eardrum quickly relaxed again.

For me, it was a very slow thing to go away (as everything with the ear is) and I guess it still isn't fully away yet as I still sense my eardrum tensing, ready to go but it can't, so gives up. I suspect that this will eventually stop too, probably in a couple of months.

I think you stand a much better chance of the fluttering going away than your tinnitus. Just give it time and try to relax about it.

Thanks. I am in a place where I will deal with the tinnitus. But the flutter is annoying and causing me great stress. Are you sure it's your eardrum? Usually it's the Stapedius or the Tensor Tympani muscle.

 

[Jupiterman]

Are you sure it's your eardrum? Usually it's the Stapedius or the Tensor Tympani muscle.

Yes of course, the muscle.

 

[Forever hopeful]

I saw Dr. Santos yesterday for my MEM, who is referenced in another thread by @NYCGuy as the specialist to see for MEM. He is a Neurotologist at Massachusetts Eye and Ear in Boston.

It's interesting that he would not diagnose me with MEM because he did not see the muscles actually twitching. But of course they weren't when I went to see him. He just kept saying "if it's myoclonus." I probably should've asked, well, what else would it be?

Basically he strongly encouraged me to do nothing. Saying that it usually just goes away on its own.

His advice was to make sure I got plenty of sleep and keep my stress under control.

He didn't really offer much by way of etiology. So I don't have any insight as to what could've brought this on. He did say that TMJ can contribute to it, which I have. It's mostly just my left ear.

He said he really only does surgery or recommend surgery for less than one percent of people with this condition because it usually self resolves.

He did say that while I can try muscle relaxers, they don't work for everybody.

He also said that I should continue taking the Magnesium I've been taking.

He really stressed the sleep and the stress control.

@NYCGuy, all of this seems consistent with what he told you.

@Jupiterman, I hope this helps to know that it should resolve, although I know you are not as concerned about yours as I am about mine. I can go days without an episode. Then I had one last night and a longer one tonight. So annoying, but so is my high pitched screeching tinnitus I get in my right ear. I hate that my brain is doing this to me.

 

[Jupiterman]

@Forever hopeful, I'm still getting some episodes of it, perhaps every three or four days for 30 seconds or so. My tinnitus totally blows it out of the water though.

I expect the doctor is correct that it'll resolve in time.

 

[Furetto]

Mine used to have a very negative impact on me as well, until I simply got "used to it" somehow. But the MEM I doubt I'll ever manage.

How long did it take you to get used to your tinnitus?

Regarding MEM, I've always had it as well, mostly just before falling asleep, and it never bothered me much. However, after experiencing a sound trauma two months ago and now dealing with a lot of stress, it wakes me up 3-4 times a night. Interestingly, I've found that if I get up to go to the toilet and then come back, it stops. Weird.

 

[DimLeb]

I don't think people in this thread fully understand the curse that MEM is. I've been dealing with it for a year and a half now (on top of TTTS). My episodes last anywhere from 2 to 14 hours and are often triggered by yawning or hiccups. During these episodes, I experience continuous spasms every few seconds, and at its worst, the flutters happen rapidly; 2 to 3 times per second. I've become so afraid of yawning that I try to stop them when they start.

The sound itself is faint, like a distant firework, so it doesn't bother me much. What's maddening is the sensation, something moving deep inside my head, as if an insect is fluttering and trying to escape through my eardrum.

I've had better and worse periods. For three months, it almost went away, except for one or two thumps every couple of days, and that was manageable. But most of the time, I have episodes every three days or so. I only wish it would disappear entirely, but after a year and a half, I don't have much hope.