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Has anyone had Middle Ear Myoclonus and how do you deal with it?
Since I had an ear infection and then perforated ear drum i have noticed i have beats in my left ear. I initially thought this was Pulsatile Tinnitus but then I noticed that the beats were not in-sync with my pulse and usually every 15-30seconds so looked to explore other possibilities.
One possibility which quickly became apparent was Middle Ear Myoclonus where your ear contracts and can go into spasm in response to certain sounds, actions or movements. This can occur for me in the mornings when I move awkwardly upon waking although more recently it has occurred due to burping or yawning and sometimes in response to loud high pitched sounds. These beats in my ear can then last for several hours and its hard to pinpoint what causes them to finally stop. I had a long period of 3 weeks since this last bothered me but it seems to have started up again.
I wondered if anyone else has experienced this and how you managed to deal with it? I've tried Magnesium supplements and Valerian tablets with some success but hoped there would be a more permanent cure?
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For everyone suffering MEM/TTTS: there is a surgery, I've had it on both ears, they simply cut the 2 offending middle ear muscles - stapedius and tensor tympani. It can greatly relieve your symptoms, it gave me my life back from this miserable condition. It's only about 20--45min,, minimal recovery. But make sure you go to a good surgeon, there are different techniques and you need a surgeon willing to use a laser , not just a scalpel, to sever the muscles, as the laser actually cauterises the ends of the muscles to prevent them from reattaching. Go to the MEM Facebook group to get names of good surgeons, in the UK I went to Professor Bance. Inexperienced surgeons won't cut enough muscle out and you'll still feel the spasms. Medication that works for some: carbamezapine , dose of 100-600mg per day. I was on 400mg for years and it was a lifesaver until I could get all proper tests and get surgery. Carbamezapine is known to target specifically the cranial nerve that innervates the tensor tympani, it is the same drug used for trigeminal neuralgia, so that it why this old-school anti-convulsant drug can be particularly effective, most neuros/ENTs might try suggesting newer drugs to try first, but it's carbamezapine that specifally seems to work for MEM more than other drugs. Avoid benzos as they are addictive and may only cause more problems with spasms returning later on. Also have a look at TMJ / jaw issues, you might be teeth grinding at night and overworking these muscles, bruxism, a jaw splint that forced my retracted mandible to move forward greatly assisted my spasms. Also rule out palatal myoclonus which is spasmsing of palate muscles in back of throat, for this you can get botox from very limited neurologists. It's a tough condition to live with, so please be kind to yourself and take care of your mental health. Diagnostic tests: long time based tympanometry, only few audiologists know how to run this test, as this is capable of picking up the muscles spasmings over 15-20secs time, evident by jigsaw pattern on testing. Also nasal endoscopy can pick up palate spasms but tell them to go super slow,my spasms were even in my nasal pharyngeal area, so the camera has to go really slowly down the areas to detect the subtle spasm movement. An ENT can also pick up the spasms simply by removing the bell part of a stethescope and inserting the tube into your ear, play a noise on your phone that typically irritates your ear and sends ear into spasm, and then have your ENT listen in stethescope and pick up the spasm/fluttering sounds.