Hi folks, this is an update to my condition, which has been diagnosed as Middle Ear Myoclonus -- although that doesn't tell the full story. I have wended my way through four appointments, PCP and ENT specialists (audiology, ear and nose) and each provider has found everything perfectly normal. They have been sympathetic and apologetic about having no clue as to cause, much less a cure. Some were aware of the phenomenon, but it is uncommon and unstudied. For those for whom the torment is ruinous, there is a procedure to cut the tensor tympani or stapedius muscle(s) that can be causing the spasms (actually hitting the eardrum) -- but it is not without risks or lasting consequences.

I have done a lot of online research and following links, and can tell you what triggers my sleep-disruptive spasms. Perhaps the below will help you in your own search for understanding if not relief.

I eventually learned either on this site as well as the MEM Facebook group that 1) the tensor tympani or stapedius muscle(s) can be spasming and thus actually hitting the eardrum, thus the thumping is known as objective tinnitus (actually happening in the ear), not subjective tinnitus (a brain signal mimicking sensation & or sound). 2) yawns and burps can trigger the spasms. This was my first a-ha discovery, as I knew that sometime full-body yawns or small burps (not belches) during the day would trigger the spasms (although the spasms were brief, unlike when lying down on my back, which is how I sleep).

I began looking for more about the yawn connection, and discovered an autonomic response called sleep pandiculation -- those feet-to-head, full-body stretches we do when waking up from sleep -- and sometimes during the wee hours when transitioning out of deep sleep. Just like cats and dogs, when they stretch, reposition and go back to sleep.

Et voila! Those stretches turned out to be the trigger for my MEM attacks! There is is a vibration that rises up my body in sync with the foot-to-head stretch... and when the vibe gets to my head, the spasms are triggered. Fast, hard thumping that runs in continuous "phrases" of arrhythmic thumps with a few seconds in between each "phrase". For up to two hours. (OMG) Not pulsatile, not typewriter tinnitus. A muscle actually pounding on the eardrum over and over.

So...an interesting discovery, and confirms that this is a physical phenomenon. I shared this with my ear and nose doctors. They also found it interesting, but as to why is this happening? No ideas. A few doctors speculated anxiety or other "behavioral health" issues. Sigh.

A few encouraging notes as to controlling the spasms. 1) My PCP put me on Flonase 2x/day, which seems to have dampened the severity and length of the spasms. 2) I have had some success in waking myself when the pandiculation has begun and managing to stop it before it gets to my head, which thus prevents it from triggering the spasms. But that's hit or miss, as it's not easy to rouse myself from deep sleep to stop the pandiculation from fully traveling. 3) Recently I have discovered (I sleep on my back) that once the spasming starts and wakes me (argh), I can lift my head a little and tilt my chin down until almost touching my chest -- and this can often interrupt the spasming before it gets really wound up. That would suggest a nerve action is involved in the loop, but so far no doctor has been curious enough to investigate. And in all fairness, perhaps it is one of those unsolved idiopathic mysteries of my human body (lucky me).

If any of you can relate to the above, great! And let me know.

BTW, I reco you check out Eustachian tube dysfunction and ear-pressure equalization techniques (like divers do) to see if that helps your tinnitus. That was ruled out for me, but can cause the thumping for some people.

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