Middle Ear Myoclonus (Tensor Tympani)

[Leigh Ann]

Hey, All.

So. I'm just gonna lay out my experience with MEM so far. It's been roughly 3 years. I first noticed an occasional (extremely infrequent - maybe a couple times a month) click in my ears, similar to when I yawn too wide. I didn't really think anything of it. In September of 2014, I went on an international flight, and when I returned to the states, I noticed that the clicking was happening a lot more frequently. I don't think I actually went to a doctor until late 2015, early 2016. However, my experience at the ENT was anticlimactic at best. I went to HUP, the best place in town. The Dr literally just listened to my ear, said "you have middle ear myoclonus", explained the difference between the TT & stapes muscles, and gave me an Rx for muscle relaxers (Baclofen).

This is the extent of medical attention I've received. (I'm working on making an appt with Drexel instead. If nothing else for a second opinion.)

In the last 6 or so months, it has become - at times - debilitating. I have to practically mute my television & put on captions just because a normal amount of volume hurts my ears. Sometimes I feel as if I am hearing things as though in an indoor pool (the way the acoustics sound sort of hollow and louder than they really are). Sometimes there's literally only a second or two between the clicks.

Generally speaking, I've had the problem in both ears. Throughout the last year, it would switch back and forth between one hurting more, and the other clicking more. More recently (getting over a sinus infection which DOES NOT HELP THE PROBLEM OMG) my right ear has mostly just been clogged (think elevation/pressure changes - the ear will pop/un-pop when I wasn't even aware I wasn't hearing fully out of it) whereas my left ear is clicking like a timer & has sharp pains sometimes.

I have also -rarely but still - experienced vertigo immediately following a serious release in pressure in my ears.

There is so much more I have to add to this, but I think this is all for now.
I'm not even sure what I'm expecting from this post. Answers? A Cure? Comiseration?
Who knows. Either way, thanks for reading - I look forward to having a conversation with y'all.

LA

**edit after posting - I mentioned the flight because I'm curious if the serious pressure changes in a short amount of time exacerbated the problem that was almost unnoticeable before.

 

[billie48]

Welcome to the forum. As the title of your post suggests,
some of the symptoms you have like dizziness, ear pain, morse code T and hyperacusis etc. may suggest TTTS. Search the forum or the Internet with TTTS for more information. I find this site explains TTTS and tinnitus & hyperacusis quite well. Take good care. God bless.
http://www.whirledfoundation.org/wp...ic-Tensor-Tympani-Syndrome-Acoustic-Shock.pdf

Postivity is a life force! If life has to be lived one way or ano

 

[StephAtkings]

Hi There,
I suffer from middle ear myoclonus and my doctor is trying to sort out tests to see what muscle is going into spasm. I have had this one and off for a few years and its awful. I am so sorry to hear you are also suffering from this. I am on an amazing facebook page called tonic tensor tympani syndrome. There are just over 100 of us on this page with very similar symptoms. Nobody has found a cure but we throw about ideas and support each other. Sometimes I do not know what I would do without this group as this condition is very lonely and nobody understands. I hope one day someone finds a cure !

 

[LulaLula]

Any updates of how everyone is doing?

 

[ShellyW]

Hello I am being treated for possible MEM. I recommend: see a neurologist, ask to be prescribed carbemazeine (Tegretol) or similar anti-convulsant. Also ask ENT to do audiology test called Time-lapse Tympanometry. There is no imaging they can do for the movement of the stapedius. However, it may show movement of the tensor tympani.

If it does and if the drug lessens or stops what you experience at a higher dose then it is possible to be a candidate for the operation to section/cut one or both muscles. This is called a tenotomy. Call ENT surgeons to see who has experience of doing this surgery and what they would be have to been shown in order to consider you for it.

I have intermittent sound and pain in my left ear.
Best wishes

 

[Mishal Almutairi]

Hello @ShellyW

Thanks a bunch for sharing. I'll ask an ENT for that med. How are you doing? Are your muscle spasms in the ear followed by any stranger cricket like sounds by chance? I've had muscle fasciculstions and spasms in my ear with the usual loud Thump! Those get my adrenaline going nice, but oddly developed this cricket chirping effect too. Man, this stuff really is hard hard not to get anxious!

 

[ShellyW]

Yes, this is the most difficult time in my life. The neurologist should prescribe the medication (not saying that an ENT won't). Also see a Pain Specialist and if they can apply nerve blockers (I don't know if this is possible, this is what I am also pursuing). No, I don't have a cricket sound though sometimes ending in cracking, which I have read is the stapedius. Yes, I sometimes have a end thump or pulsatile beat though less so since started taking the tegretol. Tegretol does not stop things over night. Firstly there's is the question of can we tolerate it without side effects. Secondly, it can only be increased very slowly by 100 mg every 2 weeks. The maximum dosage is 1200. I am on 500mg. If Tegretol creates a difference in your symptoms there are more grounds to ask an ENT surgeon for a tenotomy. Start calling the surgeons where you are and asking who has experience doing the tenotomy (sectioning or cutting of muscles of the middle ear).

I am in Sydney, Australia. I don't know if this is useful but ENT's Sean Flanagan, Jonthan Kong and Nigel Biggs have experience of it here. Sean Flanagan the most, by my research.

 

[ShellyW]

Mishal you might also try googling Tonic Tensor Tympani Syndrome, and see if your symptoms fit.

 

[ShellyW]

Hello Mishal. I hope you are going ok. I have been thinking of you. You might also look into nerve blocks. These are administered by pain specialists. Reasoning is that the movement of the tensor tympani and stapedius is innervated (caused) by the 7th cranial nerve. Therefore deaden that section of the 7th cranial nerve temporarily to see if it is the culprit. If so, then there are more long term treatments such as radio frequency burning / steroids / boxtox. Try look up nerve blocks under pain management specialists in your area. This is less invasive than cutting the nerve. Best wishes.

 

[aimeemaire]

Has anyone found any treatment? Recently diagnosed and really struggling to keep up with normal life.

 

[guenguer]

Cut the tendons of both, stapedius and tympani and the problem is solved forever.

 

[Stacken77]

Cut the tendons of both, stapedius and tympani and the problem is solved forever.

Then the ear won't be able to protect itself from moderate-loud noise, if I'm not mistaken?

 

[guenguer]

Then the ear won't be able to protect itself from moderate-loud noise, if I'm not mistaken?

True, but tbh, I don't feel much difference. Because of my "normal" tinnitus I was always kinda sensitive to loud noise anyway. Now the other ear is acting up too. If it should become a frequent problem there too, I would do it again.

In my experience, and from talking with others gone through tendon cuts, meds don't do much and only a few are more sensitive too loud noises in a considerably way.

If it happens only every few months or weeks (so it started) it's not a big issue, but every day for hours? Nah, cut that shit.

 

[Padraigh Griffin]

Cut the tendons of both, stapedius and tympani and the problem is solved forever.

Did you get the tendons cut?

I have the option of surgery and think I have to go for it. Any info would be great?