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

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

 

Hey Emma, just wanted to greet you. I don't experience MEM myself, but I just wanted to acknowledge how irritating it must be. When my tinnitus (which is highly variable) first onset a few months ago, I went downhill pretty fast. I've since picked myself back up with the help of doctors, therapy, and medication (I take Zoloft, Gabapentin, Trazodone). I can relate to having neck issues, jaw issues, and being under a lot of stress. I feel that they all contributed to my current condition. I too hope we'll know how to treat these conditions.

 

Hi Joe, thanks for your reply! I’m sorry to hear your tinnitus affected you so much, but glad you’ve found some things that seems to be working for you. 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.

It’s interesting stress, jaw and neck issues seem to be common factors for many of us.

Take care and stay strong =)

 

But of course, Emma, I hope you stay strong too. I'm not too familiar with MEM, but the way you describe it, it doesn't sound pleasant. Is the thumping sound related to your heartbeat at all? Perhaps you can habituate to it?

 

No, it’s very random and irregular and wakes me up all night. I haven’t slept in about 2 weeks now. In the past 4 days not at all.

 

Oh my that's not a lot of sleep at all. Are you taking any sleep medication, like anything prescribed? I'm hoping you can get some sleep.

 

Yes, I’m on Zolpidem (Ambien) but unfortunately the noise is so loud in my ears I still wake up. Thank you for caring!

 

Of course! I wonder if you need something stronger for a little while. Have you talked with a doctor recently about your sleep challenges?

 

Yes I have and they said I’m already on the strongest ones (no idea if that’s true).

Doctors are quite against medication in my country in general =/

 

Well that's frustrating. There are a variety of meds that you could try if they'd prescribe it.

Any way to mask your tinnitus with other sounds?

 

No, my regular ringing tinnitus I can mask to some degree, but not the MEM. Sound seems to set it off even more to be honest. It’s absolute HELL. I’m doing all I can to find some doctor who can help in any way but yeah, I’m in the wrong place. Wish I lived in the UK or so. Thanks for listening Joe.

By the way are there any sleep meds you’d recommend that I could try and ask the docs for?

 

I've been taking Trazodone, and it's been working well for me. I really hope you can find a doctor that can help you, Emma. Some people resort to taking benzos like Xanax to sleep. I took Hydroxyzine, then Ativan for a while before switching to Trazodone.

 

Thank you for that, I will write those down and hopefully I will find some kind of help soon.

 

Hello Emma!

I'm so sorry you have joined us here but hope you get comfort and find advice to help you heal and manage. I too have a tone that I cannot mask like your thumping in some ways... It is awful as the other tones go down in quiet but this one makes sleep and life a constant breaking point. The other tones are reactive so I can't mask the constant tone.

For sleep routine, or at least the attempt to rest, I use holy basil tea to calm down before I attempt sleep. I take half a Benadryl too. Last sleep I got I HAD to use a loud fan because the 24/7 tone was killing me. I put the fan outside in the hall with the door open... I got about 3 hours sleep (good for me!). When I shut off the fan my reactive tones were going crazy... but that's how I had to do it!

I hope you find a sleep routine soon, whatever it is, and get a little bit of yourself back.

Sending you hugs and calm and love from CA! Keep us posted!

 

Oh gosh how I feel for you and relate to you. I’m so sorry. People who get to sleep have no idea how lucky they are.

It’s same for me, noise triggers my tinnitus so masking it often comes with a price.

I’ve heard of Benadryl before, is it helping with your MEM at all? It’s not available in my country sadly but I might have a friend who can send me some. Big hugs to you!

 

Hey, I take Mirtazapine which saved my life back in the early days after tinnitus onset.

But everyone reacts differently to different drugs, so it's always a gamble. In my case it was a no brainer since sleep deprivation would've eventually killed me.

 

Does anyone here take anticonvulsants for MEM? Back when I was first dx'd with MEM, I was told I can take anticonvulsants. At that time I declined but, fast forward a few years and after a few different medical conditions, I find myself taking these kinds of meds.

Recently my MEM began to flare up and I started my Tegretol again and it’s been a few days and no episodes yet.

Granted this can be a coincidence but I was wondering if anyone else take these type of meds?

 

Thank you for your reply! I’m in the same boat, I need something quick or I doubt my body will be able to handle the lack of sleep. =( But doctors here in Sweden are SO restrictive with meds. I’m glad you found something that worked for you!

 

I would love to know the same and which meds people have found helpful!

 

@3mmalee, I take Tegretol and muscle relaxers but they were prescribed before my recent flare of MEM. I also take marijuana pills and that helps relax the muscles. In order for me to get some sleep while my ear is twitching I have to put the fan right next to me so it can mask the sound and sometimes I sleep with an earplug and I lay on that side so it can put pressure on it.

 

If you're desperate and doctors won't cooperate, I'd suggest you to try buy online Dayvigo (lemborexant) 2.5mg.

It's easy to find in a Japanese site and they ship to EU.

 

Did you try Dayvigo? How was your experience?

 

No, I didn't need it since Mirtazapine worked pretty well on me. 1.5 years later I still take it, although I've reduced the dose in half (from 30 mg to 15 mg) due to fear of possible long term effects.

 

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

 

I visited Dr. Santos today in Boston. A long and a very expensive trip. He is one of the few doctors in the US that does surgery for MEM/TTTS and he is the best in the East Coast.

He said he thinks I do have MEM/TTTS and that it is up to me if I want to have surgery. He didn't request to see my ear vibrate at all, he just asked me for symptoms.

He said the following:

1: Wait at least 6 months. He said most people's symptoms do go away after some time.

2: I can try a muscle relaxer but he said many don't like the side effects, so instead he recommended Magnesum.

3: I explained I suffer from muscle spasms on other parts of my body, so he said to try Magnesium or something to relax my muscles and see if it helps.

4: He explained the major risk of the surgery is hyperacusis. The chances of getting hyperacusis are 15%. He said some don't mind it but for other people hyperacusis really affect their social life because they can't go out due to the ear pain.

Mine seems to be from TMJ and he said it can for sure be the case. He said TMJ can affect the tensor tympani and make it enter in spasm, so he said to do work on my TMJ.

My symptoms were daily but now in the past month, I had only two episodes, each every 15 days, so I pray it goes away. It scares me that surgery may solve my ear muscles but give me hyperacusis that also can really affect my life. A difficult decision. He mentioned hyperacusis several times to me and he said tinnitus as a side effect of the surgery is very uncommon.

All the people in Boston hospital were really nice and treated me really well.

 

Hello. I didn't know there was surgery for MEM/TTTS. What is the procedure? I saw a paper before on membrane placement to stop hearing internal sounds or fluttering. I can't remember it well. I think I have both of these or SCDS. Only things that are very close in symptoms to what I have.

 

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.

 

Severance! Is this better than repeat Botox applications?

 

So far I haven't heard a good case with Botox, except when the ear spasm happens due to Palatal Myoclonus where Botox does help.

I heard that doctors are scared to put Botox in the ear muscles because they don't know what issues it can cause.

 

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