Stapedial Myoclonus Is Pretty Frightening

[Michael J.]

I have experienced what a neuro-surgeon diagnosed as right-ear stapedial and possibly tympanic tensor myoclonus in about five prolonged periods of two or three months each, over five or six years.

I am currently into the fifth week of the latest spell of it. Does anyone else find it as scary and miserable as me?

I guess, having found this website, that they do. It's something of a perverse relief to know that there are other people who suffer from it too, because in the UK it is described as 'a rare condition'. Mmmm, yeah. That's a great help! I have just today emerged from 4 hours of what I euphemistically call 'head-banging'.

I can only describe my symptoms as like a rubber hammer whacking in my middle ear in singles or multiples of two to four in rapid succession. Sometimes there are intervals of 10 seconds, sometimes more than a minute.

I lie down, I get up, we go for a drive, I contemplate buying a gun (no, I haven't got that far but I can understand people who have) . . . . . there seems to be no trigger for the episodes (other possibly than talking or having a sort of indigestion 'hiccup spasm'), and no clue as to when they will cease, other than sometimes a sense of greater intermissions developing between spasms.

If I am lucky an episode will last for a couple of minutes, if not, like today, there are four hours of abject fear that it will not stop.


I've had standard whistling tinnitus for years and I guess got used to it.

But stapedial myoclonus is in a different league.

My local doctor hasn't a clue and more or less tells me to go away.

I have been prescribed Clonazepam but have resisted taking it - always in the hope that the spasms will stop (and thus far they always have, though that nagging fear is always present that one day they won't).

Talk to me someone. It's a lonely world, unless you have experienced it too.

Has anyone gone down the surgical route?

Michael J.

 

[Nowhearthis]

Hi Michael,

Hope you have found relief and the spasms have stopped. I totally get it. With me its the constant thump. Goes on for hours and hours. Had it in both ears but cutting both tendons in one ear provided some relief. This disorder is the strangest thing. Most ENTs dont know how to diagnose or treat it. Mine went away for almost two years but came back. This time I opt for surgery. Set for second procedure in couple of weeks. Good luck hang tuff.

 

[Hdun97]

Hi Michael,

I have exactly the same problem - since December last year. You have my sympathies, it's such a horrible thing to be experiencing. When it starts up for me I just go into a complete panic and cannot get myself to do anything.

Similarly, mine tends to be set off by those 'hiccup spasms' you mention, as well as yawning, burping or stretching. I suspect it is set off by talking too, although I need to test that out. I have it in both ears and it can sometimes occur without a trigger.

I have had no joy with any doctors or ENTs, and haven't gone down the surgical route yet. Currently I'm seeing an osteopath who believes that the problem may be linked to the 'hiccup spasms' and indigestion, something to do with an irritated vagus nerve, as this is connected to many of the nerves in the ear and so may set off a kind of chain reaction of sorts. Hopefully these sessions might help to address that. Might be worth looking at that if you haven't already. My thinking at the moment is that if I can tackle some of the things that trigger the problem then perhaps it will resolve itself in time. I'm willing to try anything because I'd rather not go in for surgery if I can help it. It is only a muscle spasm, so it stands to reason that it should clear up eventually, even though I often fear that isn't the case.

All the best.

 

[MrDan]

Hey man, if it really is Stapedial Myoclonus, that's completely treatable and resolvable. I thought I might have had this based on the nature of my tinnitus sounds, but now I'm not so sure.

Have you tried magnesium supplements or muscle relaxants? And finally, if you know for sure that what you have is stapedial myoclonus, did you know you can have the stapedial muscle cut to prevent this from happening?

You should feel lucky to know that you have a condition that is actually fixable!

 

[Chelles]

@Michael J. do you still come to this site? There are a few people here who had the surgery not sure if they are in the UK tho but wouldn't hurt to find out. Oh by the way it's Michelle

 

[AnxiousJon]

My state health insurance turned me down. When I have the money for non-medicaid insurance, I will be getting the surgery. In the surgery, they cut both the stapedius and the tensor tympani. The surgery will work for someone as long as the spasming is coming from the tensor tympani or the stapedius.
If the surgery doesnt work, it is because the spasm is from the 3rd muscle up there that connects to the eustachian tube(that can cause a fluttering of the ear drum). I am completely convinced that mine is the tensor tympani, because of how fast it moves, and how much it causes the middle ear bones to rattle.

 

[Chelles]

@AnxiousJon ive never heard of a third muscle in the middle ear whats the name of it? What do your spasms sound like?

 

[AnxiousJon]

@Chelles
The Levator Veli Palatini
My tensor tympani seizes at the speed of light, causing a constant rattling of the middle ear bones(very loud, causing hyperacusis). It also mimicks sounds that I hear causing phantom sounds. there is a supplement that I take that causes my body to put pressure on the middle ear which muffles the sound and thus takes away the hyperacusis and phantom sounds, and makes the sound very tollerable(does not eliminate the seizing).

https://www.tinnitustalk.com/thread...i-cant-tell-what-but-it-does-something.12665/

I still working on my dream project. I am going to try suggestions to my subconscious to repair the neural pathways responsible for this condition, once I am again in lucid dream.

https://www.tinnitustalk.com/threads/dream-treatment-increasing-time-away-from-tinnitus.13315/

 

[Chelles]

@AnxiousJon so did you figure out if it was the veli palitini? I wish there was an easy way to find out which muscle is the culplrit. What does your sound sound like? Mine is like thumps like something beating on my ear drum. Is there anything that can ne done to the veli palitini? Do those pills help with the spasms or the tinnitus?

 

[AnxiousJon]

I know mine is the Tensor tympani because of the direct effect it has on the middle ear bones it is connected to. My award-winning neuro/ear-surgeon told me if I get the surgery, there really is no-down side to it except the standard risks to surgery itself. So if yours is either the Tensor Tympani, Stapedius or the Levator Veli, and all seem equally likely you have a 2 out of 3 chance to have the surgery succeed. He did tell me that the rhthym of the tensor tends to be faster while the stapedius tends to be intermittent at like 1 thump per second or something.
If that sounds like you, then if you want my guess, I would say that if it feels more like the whole ear with eustachian tube near the ear drum is twitching, it is more likely to be the Levator Veli, if not it is more likely to be the stapedius.

 

[japongus]

I know mine is the Tensor tympani because of the direct effect it has on the middle ear bones it is connected to. My award-winning neuro/ear-surgeon told me if I get the surgery, there really is no-down side to it except the standard risks to surgery itself. So if yours is either the Tensor Tympani, Stapedius or the Levator Veli, and all seem equally likely you have a 2 out of 3 chance to have the surgery succeed. He did tell me that the rhthym of the tensor tends to be faster while the stapedius tends to be intermittent at like 1 thump per second or something.
If that sounds like you, then if you want my guess, I would say that if it feels more like the whole ear with eustachian tube near the ear drum is twitching, it is more likely to be the Levator Veli, if not it is more likely to be the stapedius.

But the middle ear bones, isn't the stapes one of them and the stapedius is attached to it? Also, would you mind telling me or us the name of your neurosurgeon? thanks

If it helps, I have sound sensitivity, deepish, low frequency thumps, felt more than heard but both heard and felt, a sort of hollowish deep sound that accompanies like a plague from hell all external sound (and internal sounds like footsteps or eye blinking. The thing is, the reason why I suspect it could be the stapedius is that I've very rarely had much more intense thumps and they really seemed to be ear drum thumps even though no one was there to record them. I would have thought that tensor tympani would create thumps on the eardrum instead of the middle ear bones, no?

Btw, interesting points about the bioflavinoids and veli palatini. Astrid from chat-hyperacusis too felt it was the veli palatini, but lib just felt she hadn't been operated on correctly. The idea was the veli palatini was too tense, but wouldn't that also be affecting the stapedius?

 

[AnxiousJon]

But the middle ear bones, isn't the stapes one of them and the stapedius is attached to it? Also, would you mind telling me or us the name of your neurosurgeon?

http://www.nwearinstitute.com/about.html

But the middle ear bones, isn't the stapes one of them and the stapedius is attached to it?

Yeah, those two both attatch to the same bone apparatus. Mine causes fast eardrum fluttering as well as the rattling. I suppose the Tensor could move slower, but I guess it is more common for the Tensor to move fast and the stapedius to move at a lower rate and intermittently.

All 3 of these muscles relate to the concept of muscle tension/seizures. I could see Veli stuff being related to TMJ and inflammation perhaps, but who knows. It is a much larger muscle and gets used more regularly with the body's standard function. The tensor and stapedius problems are probably rarely anything except neurological disorders (as I see it).

 

[japongus]

My tensor tympani seizes at the speed of light, causing a constant rattling of the middle ear bones(very loud, causing hyperacusis). It also mimicks sounds that I hear causing phantom sounds.

These symptoms are so similar to mine it's ridiculous. Also the idea that these muscles are the ones that are loud in themselves is something that hadn't occurred to me. I mean, sure, I was feeling them, and sure they get loud, but I just hadn't thought up the very logical thing that they then have to be heard by myself, and boy are they heard, they're heard and they're felt...

However I'm not sure which of the muscles it is. Is your condition objective externally heard by someone else, is something weird visible on tympanography, is it viewable from outside inspection of the ear drum? Because mine isn't so there seem to be very few doctors, albeit more experienced, that believe it can still be myo.

Do you have a permanent background vibration, if yes what do you think it is, an overpressed cochlea, an overlyclosed eustachian tube or another wall or muscle of the middle ear?

 

[AnxiousJon]

My ENT didn't do those tests; he said trying to diagnose by those methods doesn't produce conclusive results.

The seizing is constant except seems to go away while I am sleeping. When I wake up it seems to ramp up slowly till it gets up to full speed. When I don't take my supplements my ear drum is always rumbling: sounds like a helicopter in the distance.

 

[japongus]

My ENT didn't do those tests; he said trying to diagnose by those methods doesn't produce conclusive results.

The seizing is constant except seems to go away while I am sleeping. When I wake up it seems to ramp up slowly till it gets up to full speed. When I don't take my supplements my ear drum is always rumbling: sounds like a helicopter in the distance.

Same with Sismanis. Mine though is the same all day, except of course in sleep. But if I don't have a background permanent fan on covering all external uneven sounds, I'll be woken up by the slightest things, same for you? Of course I don't know if that's because we have intermediate sleep areas where our ears are half active or if we all wake up every now and then in our sleep and it's when awake that it's hard to go back asleep again if the sounds are uneven.

But I get a vibration all day, mine doesn't ramp up, it did used to appear in sound and disappear in silence before a second acoustic trauma dropped the tolerance level down to the minimum.

Did your doc give you a price quote for the operation? How many has he done?

 

[Leigh Ann]

I have to say that everyone on here who experiences "bouts" or "spells" of MEM should (relatively speaking) consider themselves lucky. I have been experiencing the sounds for around three years now. Some days are better than others, but there has not been a single day in at least the last two years where I haven't felt it at least a couple times a day. There are times where I can't be outside really, because the basal level of ambient sounds are too much for me to handle. I have to watch my TV with captions because I just Can't turn it up all of the time. Ugh. There's so much more I want to go into, but I'm new to this forum and I'll do some more exploring first.
sorry if this came off as more complaining than helpful. I'm just glad to find that I'm not literally the only one with this problem.
**Added after - I don't know if it's relevant, but I was about 23 when this started.

 

[leah farr]

Hi Michael,

Hope you have found relief and the spasms have stopped. I totally get it. With me its the constant thump. Goes on for hours and hours. Had it in both ears but cutting both tendons in one ear provided some relief. This disorder is the strangest thing. Most ENTs dont know how to diagnose or treat it. Mine went away for almost two years but came back. This time I opt for surgery. Set for second procedure in couple of weeks. Good luck hang tuff.

 

[leah farr]

H michael can i talk to you please?

 

[leah farr]

@AnxiousJon so did you figure out if it was the veli palitini? I wish there was an easy way to find out which muscle is the culplrit. What does your sound sound like? Mine is like thumps like something beating on my ear drum. Is there anything that can ne done to the veli palitini? Do those pills help with the spasms or the tinnitus?

 

[leah farr]

Hi chelle can i talk to you please, i cant cope.