For Those with Middle Ear Myoclonus...

[Joseph.]

Hi Everyone,

I've been living with MEM for about four years now. Mine is similar to people experiencing it to be sporadic and episodic.

Over the past four years, there are periods of time where the spasms disappear for close to 6-8 months (this has happened maybe twice) but the spasms still exist during these periods and last no longer than 15 seconds.

I'm reaching my breaking point with tinnitus and MEM (I wish it was only tinnitus I had to struggle with) and everything sucks.

I'm wondering how others are finding the will to live after struggling with MEM for so long?

I'll be approaching year five soon and I've tried multiple medications for relief (mainly prescribed muscle relaxers) to no prevail as it seems that these are not a cure by no means. I'd say surgery is a potential option but I don't see the point where there could be many complications to my ears post op. I've had ear issues ever since I was a tiny lad. So, I'm scared to get surgery if it won't even be a long term solution.

 

[ayayron]

Hi there, Aaron here. I just recently got my first symptoms, like everyone is describing, about 2 weeks ago, for about a 12-hour period after deadlifting a very heavy amount. I went away after those 12 hours and stayed away for about 2 weeks.

Then at work last Sunday it came back. I've pretty much had it on and off with a couple of breaks in between. I have that pop when I burp and I feel pressure in my ears.

Reading everyone's comments made me feel so much better. I have had tinnitus in my right ear for about 2 years and am comfortable with it, but when the MEM started in my left ear, I really started to freak out. It sounds like I just need to manage my stress and my burbs and everything will be OK.

Thanks everyone. I will check in in a couple of months.

 

[mdisxn]

Hi everyone,

I seem to be the only one posting in 2023 so not sure if any of you may see this.

In October 2022 I had just finished doing my last ever University assignment when a horrible headache was brought on, accompanied by sharp ear pain which was then followed by a thumping noise - I described it as a butterfly flapping its wings inside my ear every 10-15 seconds. This is something I had never experienced before in my life and the thumping kept me up all night.

The headaches and ear pains lasted for weeks, with the thumping only happening occasionally. I went to see a doctor who told me I had the flu, however, the doctor then proceeded to tell me I had high blood pressure for a 21 year old and suggested that could be the cause. I have since had multiple examinations by a cardiologist which have come back clear. I also struggle with major health anxiety so I have had CT scans of the head, MRIs and so on. All have come back clear.

Every day since the initial 'episode' in October 2022 I have had a fullness / pressure feeling in my right ear, popping or clicking when I swallow, a thunder like rumbling when I yawn and when I pinch my nose and blow my ear squeaks. I have had a hearing test and also have been told I have low frequency hearing loss. My eardrums and Eustachian tubes look 'healthy' according to my ENT.

I, like most on this thread, have found that the thumping episodes would start after a hiccup, burp or a large stretch when I would wake up in the morning - the kind of stretch where you are laying in bed and would tense all of your muscles.

Between October 2022 and January 2023 the thumping would occur in my right ear, every 2-3 days and last for up to 24 hours. Now, I only have a 12 hour long episode every 7-14 days (thank god). HOWEVER, something new has happened. Every night at around midnight I am woken up with the thumping sensation in my ear. I have NEVER experienced this before and am confused how this is happening in my sleep?!?!

Has anyone else experienced this before? The thumping every 7-14 days, although annoying, was bearable, but getting woken up every night is honestly destroying me. It's getting to the point that I dread going to sleep. Once I wake up I am eventually able to go back to sleep and when I wake up in the morning it's gone, but the broken sleep throughout the night is making me so fatigued throughout the day.

I have been taking Magnesium, Ashwagandha and Melatonin before bed and I am still getting woken up. Is there anything else I can do to stop this?

I would also like to add that before all this started, I would never burp. Now, I am burping non stop all day (not huge belches but little hiccup like burps). What can I take to stop these burps and has anyone's ear thumping calmed down by controlling the burps?

I am booked in to see a different ENT in June and I am going to bring up some of the points mentioned in this thread to him as evidence so hopefully someone will believe me and not think I'm crazy!

Would be interesting to hear how everyone is going with their ear thumping who made comments on this thread in 2018. I guess I just want some hope that this isn't permanent.

 

[MEMory]

Would be interesting to hear how everyone is going with their ear thumping who made comments on this thread in 2018. I guess I just want some hope that this isn't permanent.

Hi again.

I realize my last post was in April 2019.

Note that when people stop posting on forums/groups, it's usually because they're in remission and don't care anymore about others. I guess it was my situation too.

As a reminder, here was my introductory post about MEM on Tinnitus Talk.

First, let me illustrate the periods I had active MEM episodes (meaning without more than one month of remission) since it first started. Consider that a dash (-) means "no episodes during that month", X means "episodes during that month", and H means "episodes during half of that month":

2012: -X---XXX----
2013: ------------
2014: ------------
2015: ------------
2016: ------------
2017: ---------o-- (a single day)
2018: ---XH-------
2019: ----------HX
2020: XX----------
2021: ------------
2022: ------------
2023: ----X

As you can see, I'm currently living a period of MEM (started 2-3 weeks ago) after a 3-year+ break, which is why I've been absent from Tinnitus Talk.

My history shows that it's not permanent. I try to not get anxious about that, but to acknowledge that I've had short periods of MEM with long remissions in the past.

Here's how I cope:

• Earbud with a good seal + rumbling masking sound during an episode.
  This is what saved me the last time, and it still does today. Listening to that sound for hours is a bit annoying, but it completely masks the MEM thumps. This allows me to work and sleep and do pretty much anything as if MEM didn't exist. You need a very low-frequency rumbling sound with some randomness, not a tone. This is what I usually listen to. Make sure the earbud seals the canal, and then increase the volume until you can't notice the MEM thumps. Using this also makes it impossible to time an episode or the duration between groups of thumps, which I used to obsess about. At some point, I'll just remove the earbud or pause the sound and wait for thumps. If they're still there, I play the sound again for some time.
  
  
• Accept it.
  Especially when the thumps are less intense in both frequency and amplitude (less distracting), after all those episodes I can just tolerate the MEM while moving on with my day.
  
  
• Mute/quit Tinnitus Talk and any other groups.
  Unless you make some breakthrough discovery which you should share, not always reading about others having MEM issues helps focussing on something else. Don't get me wrong, it helps in the beginning because you don't feel alone anymore. But it may become addictive and a bit toxic for your mental health.

Even though my history suggests that it's always temporary, I'm still willing to find new solutions. I never tried any medication. After reading some posts here and there, I'd like to focus on neck/jaw muscle/bone stuff next. I'll look more seriously into physiotherapy and osteopathy. I know it has helped/cured MEM for some people.

Really, you need to find your own, tailored solution. As someone wrote here, it's a multifactorial issue, and there's no universal cure. Some people can stop it when pushing on specific points near the ear, or massaging/streching specific muscles, or taking Magnesium or vitamin supplements, or taking Clonazepam, or stopping a specific medication or caffeine, or chewing gum, or listening to loud noise, or sleeping more, or relaxing, etc. I've seen dozens of working solutions. But don't rush into trying all of them at the same time. Take your time, and chances are MEM will stop anyway at some point just because... it does that. All the ENTs I saw during those years told me "don't worry, it stops eventually", and indeed it always did, without even trying anything listed above.

And if it doesn't stop and nothing seems to work, remember that, if it's really MEM you have (one of the two muscles of the middle ear twitches), then tenotomy of the tensor tympani and stapedius has a very high success rate without noticeable complications. Of course it's a last resort, but at least there's one. I read many success stories about this surgery.

I don't know if I'll come back here soon, but I hope it helps if you're reading this.

 

[Nick47]

• Cyclobenzaprine
• Carbamazepine
• Clonazepam
• And a few others, including Botox and Piracetam

→ Tensor Tympani Syndrome

 

[Julian C]

Posting an update on my symptoms. I had a large remission period in early 2023 up until now where I didn't have constant spasms in the ear for almost a year (occasional single spasm which wasn't an issue). Most of the time if I don't have any symptoms I don't think about it but when they occur it becomes hard not to think about them.

My symptoms returned on Christmas Eve this year funnily enough and disappeared in the afternoon of the same day but returned again about 5-6 days later. Whenever I have to sleep with this condition I tend to have to use masking music from my phone and an earbud to distract my brain from thinking about the sounds. This helps a little but obviously isn't a full solution.

In my case the symptoms are usually initially triggered when waking up in bed. Certain sounds like typing on keyboard will make the symptoms flare up when they are occurring as well.

I hope that more people are able to post any beneficial experiences or potential breakthroughs if they remember to return.

 

[Swampy]

I'm not sure I'm best to answer this. I have had MEM & TTTS episodes for about 10 years now, but I have a whole host of ear issues on top of that, and have had ear issues my whole life.

In these 10 years I have had periods of remission from the thumping spasms (the sort from burps/hiccups/yawns/stretching or moving my head/neck) for 6 months at one point, and the odd couple months here and there at some points during the 10 years. The other sort of spasms - the fluttering and rumbling to sounds such as voices, cutlery, plastic bags, and touch like touching my face lightly, moving my eye, smiling etc. has never been in remission, however it has periods where the intensity of it can get higher or lower.

I'm not sure why I had the 6 month remission period at some point, I thought it was Magnesium spray, but that no longer seems to work and I currently have episodes almost everyday, usually lasting between 5-12 hours on average and has been that way the last two and a half years, with almost daily long episodes. However, before this, like I said, I did have random periods of remission.

I do have other issues: Patulous Eustachian Tubes/autophony and chronic sinus issues at the same time which is almost an opposite problem, very weird. I also have a cholesteatoma growing, slight hearing loss, various tinnitus tones such as crickets chirping, high-pitched noise and a deep revving/humming I can hear and feel, pulsatile tinnitus, weird non-fleeting/fleeting tinnitus that gets reactive and distorted and lasts a while, plus head pressure and neck issues.

I can't really pinpoint or figure out why the thumping happens which is annoying because sometimes I can burp or turn my head and be "ok" and other times it just sets it off all day, and at one point I felt Magnesium helped, but it doesn't anymore. Very odd.

I am contemplating surgery to cut the middle ear tendons and will report back here if I do. It's just a bit risky with all my other ear issues, however it's been wreaking havoc for 10 years now and I'm drained. I'm also due a turbinate reduction surgery in a couple of days so I'm going ahead with that first to see if that helps any of the above issues, and then when I next see my specialist I will discuss cutting the tendons.

I do know many have luck with Magnesium, and some with the surgery, and I've seen others getting help from physical therapy.

I wish everyone the best

 

[neper]

Is a periodic clicking sound every 20-30 seconds a type of MEM?

I have been suffering from tinnitus for a year, which started after I took an SSRI for a few days and then stopped taking it. For the last four months, I have had a vibration sound in my left ear every 20-30 seconds, lasting 2-3 seconds, but now the right ear has started clicking. These vibrations and clicking sounds occur even without any external noise. I have regular pressure and popping in my ears. Also, I have strong muscle contractions in response to sudden noises, which seems to be an obvious sign of TTTS.

I don't seem to have a TMJ problem, plus since last year, various ENT doctors have examined my Eustachian tubes several times and found no inflammation. Interestingly, before this vibration and clicking, I had terrible reactive tinnitus and sound distortion, which now seems to have disappeared. So I'm guessing that either the antidepressants I took a year ago somehow messed up my middle ear, and it's still getting worse, or there's something somatic going on with me.