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Anyone suffer from Tensor tympani myoclonus?(fluttery ear drum thingy)

(10 Posts)
smartiejake Fri 05-Jun-09 14:29:49

Think I suffer with tensor tympani myoclonus.

I know a bit about the way the ear works (am teacher of the deaf)so kind of knew how to start looking. I always kind of guessed it might be something to do with the muscles in the middle ear.

I have had this strange beating noise/ sensation and pressure in my ear for years but it's never been much of a problem and I am a bit of a doctor phobe so not really the sort of thing I would be bothered to see anyone about.

But really noticing it when I use the sound on my computer so put out a thread on here to see if anyone else experiences it and then out of mild curiosity did a bit of research.There is absolutely no doubt that this is what I am suffering from- the symptoms described are mine to a tee.

Anyone else suffer with this? If so is there anything you have found helped. I know you can have surgery to cut the muscle in the ear but mine's not bad enough for that.

smartiejake Fri 05-Jun-09 17:36:04

Bumping for the evening crowd

smartiejake Fri 05-Jun-09 18:53:54

No one?

mablemurple Fri 05-Jun-09 19:21:55

smartiejake - I think I might have this, but have never been properly diagnosed. About 20 years ago I had several hospital appointments to try and recreate the fluttering sound I had in my ear - it sounded and felt as if my eardrum was vibrating very quickly - but as I couldn't make it happen at will I was never diagnosed with anything. Certainly no-one mentioned ttm. In fact, my last appointment was quite humiliating - a young doctor who obviously thought I was a bit of an attention seeker and making the whole thing up ended up putting a tuning fork on my head for some reason (am quite cross with myself for not complaining about him at the time).
I've not heard of ttm before so I will read up about it, but from what you say it seems like I may have it. It has got better over the years, and happens infrequently now, mostly when I feel hot inside my ear, iykwim.
It doesn't affect me much now, but I don't think I would have taken the operation route had it been offered to me when I was being investigated - seems a bit drastic.
Wow, Mumsnet is amazing - I thought my ear thing was just an oddity I would have to put up with grin.

notcitrus Fri 05-Jun-09 19:58:46

Does it feel like an annoying toddler poking your eardrum unrythmically?

I had this and docs kept leaping to conclusions of infection based on my ear problems. Eventually ended back at the specialist I'd seen 15 years earlier, who said "I've seen this once before in my career. Have your wisdom teeth come through recently?"

Yes. And getting tangled with the facial+acoustic nerves. Had them out and it stopped. It sometimes returns when I get TMJ but then I wear a mouthguard for a couple weeks and it goes.

hth

smartiejake Sat 06-Jun-09 13:21:10

Yes that is exactly how it feels notcitrus.

I had my wisdom teeth out years ago so it can't be that causing it but I have had it for a long time. I can't remember the last time I had an ear infection but I do hold alot of tension in my jaw (I have mild fybromyalgia and my jaw can be quite painful at times) and I used to have a gum shield thingy as I grind my teeth at night.

I have read that the little muscle attached to the eardrum (tensor tympani?) is all tied up with the facial muscles and that some people have more control over them than others (with most people I believe it is an involuntary response designed to protect the inner ear when you hear a very loud sound.)

I know that I can actually make my eardrum tense and hear a sort of whooshing noise. Until yesterday I had no idea what that was.

I have only really noticed it more recently as I have been watching more stuff on the catchup services on my laptop but it doesn't usually bother me that much.

Mable I have also read that it is very rare. Thanks for your responses ladies. If you are interested this forum is interesting and here is a more medical explanination.
If you click on some of the links on the wiki page it leads to more articles and sites.

FouFoucault Sun 07-Jun-09 19:27:07

How odd that I found this - I have a doctor's appt this week for exactly this sort of thing. A continuous vibrating/ fluttering sensation in one ear.
I thought it was the thing called 'The Hum' that they were joking about on Have I got News for you a few weeks ago.
I hope the GP doesn't tell me that - I feel silly enough as it is.

Well I never knew this had a name, nor that others would have it - I frequently feel a fluttering in my ear, almost as if there's a butterfly down there trying to get out?! It's on and off and lasts around a minute each time, nothing that is severely limiting my life or anything, nice to know I have a proper name for it though! smile

smartiejake Mon 08-Jun-09 21:58:11

Perhaps it's not as rare as I have read then!

Spillage21 Mon 08-Jun-09 22:09:26

Ooooh, I get this after I have been on the phone. Feels like my eardrum is having a bit of a spasm.

Occasionally my hearing tunes out and then tunes in again, like someone fiddling with the balance knob on a stereo.

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