My Strange Case of Possible MEM (Middle Ear Myoclonus)

Hello everyone, I'm a 20 year old male college student and back in December of 2019, I was officially diagnosed with Middle Ear Myoclonus. This post will be all over the place, but I hope the amount of detail that I provide may help find the source/cure as I await a contrast MRI scan. I believe mine is triggered by my GERD/acid reflux as they seem to be correlated, but I could be looking at a co-symptom rather than the source of MEM. My episodes used to be inconsistent, but now occur almost daily in my right ear, mainly during or after eating and sometimes when my ear gets cold outdoors. I do not necessarily have to have reflux symptoms for an episode to trigger. Before January, episodes only seemed to be triggered by sleep deprivation, certain foods (chocolate, anything tomato based, but this is inconsistent), burps that go through the nasal cavity/eustachian tubes (even on an empty stomach), allergies and occasionally by stretching and yawning hard.

The noise and sensation has kept me up many nights and at one point it kept me up for almost 3 days, I worked 2 of those 3 days and went to the E.R. due to the ferocity of that episode. My worst episodes are in my left ear, but this used to only occur in my right ear until November of 2019. Several years ago, I was struck by a tree trunk on the left side of my head/neck, but as far as I am aware, I did not suffer a concussion or severe damage beyond being shook up. Furthermore, my ear problem did not begin until a year or two after this incident at the minimum. I occasionally have short episodes lasting seconds, but usually my episodes last several hours. During these episodes, it starts off as a single thump, then evolves into bursts of thumps and eventually dies down the same way it started. I say thumps and not flutters intentionally as flutter implies it to be lighter sounding.

I've gone in circles about what causes my MEM and the same ENT who diagnosed me did no tests at all to find a source. I was told that he cannot help me and told me about a surgeon (Dennis Poe in case anyone's curious) that is on the other side of the country and rushed me out of his office in December of last year. Thankfully, my college is in another state where I met a much more confident ENT that was willing to hear me out and work towards finding the source. This new ENT believes it is not MEM, or at least not as I describe it, as Diazepam had no effect when I was prescribed with it to remedy MEM. As of typing this post, I'm about two weeks out from a contrast MRI thanks to his efforts. This does raise the question if anyone else here has had a scan and if it revealed anything about your respective type of objective tinnitus.

Sometimes I wonder if it's neurological as in December and early parts of January, I had pain going across from inside my skull, linking the ears together in pain at the back of the skull. This pain however has not recurred and may have been from me allowing cannabis smoke (hopefully I'm allowed to mention this here) to enter my ears in a vain attempt to stop an episode, but again it's inconsistent. I was recommended by the same office (though before I saw the ENT) of my current ENT, to visit a "Neurotologist", though I am unsure of where to find one. Muscle spasms around my right eye concur with my ear spasms at times, yet at other times occurs with no ear muscle spasms. I can press on certain areas of my left but not my right eye, which cause one of the middle ear muscles to do a quiet rumble, but usually when the rare episode occurs in the left ear, this control is lost (however, control has been lost when there wasn't an episode). This ENT also said that I do not have TMJ or palatal myoclonus as he observed both of these areas, however I was not having an episode at the time so there's still the possibility for it to be palatal.

I went through a span of time from January of 2020 to early August of 2020 with no episodes except for one occasion in the left ear that didn't last for more than a couple hours. I used to think this problem was weight/blood pressure related, but I am now much healthier than when the episodes began. I was active and had a labor intensive job, but of course the pandemic happened and even with the inactivity, the episodes didn't return during this time period in spite of eating all the same foods that triggered previous episodes. I mentioned activity as I theorized that the hard work and steamy showers after work somehow led to an end of episodes. I am unsure if this is the case as I haven't had the time to return to that level of activity consistently. I can't think of why I had no episodes at this time, but if anyone has any guesses as to why, please note them.

I believe now there are several factors in play when it comes to my episodes, including airborne and food allergies, acid reflux, stress, and anxiety. For the past week, I've been taking loratadine 10mg, diphenhydramine 25mg and two Tylenol sinus severe pills (two pills total 650mg acetaminophen, 400mg guaifenesin and 10mg phenylephrine HCl) which have successfully stopped some episodes, however it does not always work. I do not believe taking these pills coincidentally occur with my ear stopping as it stopped several times after I took these pills in the timeframe it'd take for the pills to start working. I have taken magnesium supplements nightly at the advice of my chiropractor, who I also visited in seeking treatment for MEM (I understand some may view chiropracting as quackery, but I'm desperate) but this didn't seem to help. I recently bought a HEPA UV ionizing air purifier in my room that has seemingly helped reduce the time episodes last and decreased the amount of triggers, but again there could be no correlation as my episodes are anything but consistent.

Some may suggest PPIs to stop acid reflux from being an issue and while they used to help and episodes even stopped after several days on them, PPIs have now begun to make my GERD symptoms worse and causes the worst heartburn of my life. Without PPIs, my reflux only begins to burn a little if it reaches my upper throat/back of the mouth. Usually my spams increase in repetition when this occurs. I have gone on keto/carnivore diets with my episodes decreasing typically (I was on keto inconsistently before and during the time when I had no episodes) with seeming success, but as a college student I don't have the time or money to eat like this and my cafeteria does not have the fat necessary to maintain either diets healthily. I have theorized that the air from my stomach somehow goes up into the middle ear and because of the acid, irritates my ear muscles, but I cannot say that for certain as perhaps the reflux irritates a nerve that happens to connect to the middle ear muscles. I have tried low dosages of CBD oil with little effect, as well as other supplements that also had little effect.

I have used nasal sprays in the past, though not for a consistent enough time to know if it made any difference, I am getting Flonase soon and will commit to its usage for a month to see if there's a difference. I've thought about my adenoid perhaps somehow causing this, but I have no other symptoms of an enlarged/inflamed adenoid as far as I know, as it's super rare if I snore and it's usually because I fell asleep in a weird position. I have not tried high doses of CBD oil or Botox injections, though both seem promising. I've tried applying pressure to the zygomatic bones, aspirin, phenylephrine by itself in doses of 30mgs, and the Valsalva maneuver, sucking in my ear drums or expanding them fully softly to little use. Sometimes during or after an episode when I yawn or my ear equalizes in pressure I can hear a bubbly/crackling sound as if liquid was being shifted, but that begs the question why the Valsalva maneuver and decongestants do not seem to help. I have seen blood go down my throat from above where I can see, but this could be unrelated as I've seen it only once. At others times I have tasted blood in the back of my throat but again it could be from anything else. I had an ear pressure and frequency test done at the ENT office, with the only things being noted that I have above average hearing, however cannot hear a few high frequencies in my left ear.

I am interested in Botox injections into one or both of the middle ear muscles, though from what I'm reading it seems this requires opening up the ear drum in the same way if I was just to have a tenotomy performed. With this in mind, are there any advantages of going the Botox route despite the need for it to be applied every 3 months? Why not just the tenotomy and be done with it? I've read cutting the tensor stapedius leads to hyperacusis, which seems arguably worse than what I have at the moment. I've read that sometimes the muscles regrow and spasms return, but in others they don't return at all in spite of the healing. Are these claims true? I've also read that certain nerves can accidentally connect to other nerves which leads to MEM in the first place and I imagine that a tenotomy would permanently sever that nervous connection. I've read that the middle ear muscles are critical to hearing protection and the blocking of certain internal sounds in the body, yet others say this is only hypothetical. Which is it? I don't know if I'd trade my ear episodes for constantly hearing my internal functions.

So after all of this, I am left wondering is it even MEM? Why is it so inconsistent yet heavily correlated to eating food or acid reflux? Drinking ginger beer has seemed to help at times. Has anyone else seen acid reflux as the source of their middle ear spasms? My wisdom teeth are slowly coming in, could that be connected? It would explain why this only started in my late teens as that is typically when the wisdom teeth start growing out. I would be so happy if there was a non-surgical or minimally invasive solution as I have never been unconscious outside of sleep and naturally fear everything that could go wrong in a surgery, though not to the extent where I'd deny treatment if it was the only definitive solution.

Feel free to ask any questions in case I left anything out and sorry about the length of the post.

EDIT:
One thing I forgot to mention is that fasting almost always prevents full episodes from occurring. I did practice intermittent fasting and this alongside the exercise I was doing at the time may have somehow contributed to the lack of episodes.

 

Could you try this again if you can reproduce the good results?

Intermittent fasting is a healthy lifestyle anyway, and exercise too.

 

I really wish I could but I'm on my college's football team and I can't fast and also meet my caloric/macros levels.

 

Look at this thread by another member with MEM. I also have it. I’ve had one surgery and am seeking a revision surgery as I believe the tympani muscle has reattached and cause a resuming of symptoms. I was approximately 2 years with little to no symptoms in the operated on ear. in the thread there is good information about doctors you can try and see, perhaps more in your area. Good luck. ❤️

Tensor Tympani Regrowth: Hearing a Click While I Speak

 

Did you experience any changes in hearing post surgery? For example, did any internal sounds like your voice become louder or quiet? Or, do external sounds come in differently? Thanks.

 

I have received an MRI and CT scan. I'm awaiting the results of the CT scan, but the ENT said my condition has to do with dysfunction of the 7th facial nerve. He said it's entirely the tensor stapedius, rather than the tensor tympani, but how can this be when my ear moves when it spasms sometimes? I read that only the tympani is in the position to cause the ear to move. That's vague and he's still recommending against surgery, but what choice do I have when everything else has failed to yield results?

 

Hey, I know this post is old but what did you end up doing, did anything help you?