Tonic Tensor Tympani Syndrome

I regularly experience this sensation ever since I became dizzy. It feels like a flutter in my left ear, I think it is the little muscles contracting inside the ear, and I hear a little crunching sound as it does this. It usually occurs in response to certain higher pitched sounds, for instance cutlery banging on a plate or when I put a glass jar down on the bathroom tiles. I can also get it sometimes when speaking either on the phone or in person to someone. I have looked it up and it is called Tensor Tympani Syndrome. I found the following link interesting and I wondered if anyone else has it and how it links to MAV:

hla-lakeland.org/do-i-have-t … rome-ttts/

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I actually had a hearing test recently where the audiologist did an exam that showed how this muscle reacted to sound at certain pitches. It was very interesting and showed that I have a high sensitivity to sound, especially to higher pitches - I already knew this from my own experience, but it was cool to see it in action and for someone to be able to record it. I had no idea they could test for sound sensitivity.

I get those flutters in my ear, especially on days when I am more off balance and when I am exposed to loud or high pitched sounds. For ages I was told that it was fluid in my ear or possibly a blocked eustachian tube and was taking meds to clear up the fluid, but eventually realised that approach just wasn’t working. When I described this symptom to my VRT therapist they explained that it was muscle tension, a lot like what this article describes.

It seems from the article that this syndrome is generally caused by exposure to loud sounds or by an emotional reaction (stress/anxiety/worry) to tinnitus or sound sensitivity.

My own thoughts on this are that muscle tension from the jaw & neck have a lot to do with it, especially in cases like mine where I didn’t have that exposure to loud sound. I recently learned that I do have a TMJ problem, and I’d imagine that the muscle tension from this has a lot to do with the flutters in the ear and the migraine/balance problems. So am working now to reduce the muscle pain & tension in jaw, neck & shoulders and it’s having a good effect on my balance :slight_smile:

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As far as TTS specifically as a cause for your ear issue and how it relates, I honestly have no idea but it seems to be linked with hyperacusis (increased sensitivity to sound), which a lot of us have with migraine, and it is also controlled by a branch of the trigeminal nerve. Since that nerve is also involved in migraine activity, I wonder if migraineurs would be more prone to the TTS. These are totally guesses by the way, so definitely don’t take it as fact.

I also have the fluttering in my left ear on and off (no tinnitus or anything, just fluttering like a moth is stuck in there). Seems to come and stay for a month or so, then I don’t have it again for awhile. Sounds don’t make a difference with mine though. I asked my specialist about it when I was in there, and it ended up being benign muscle fasciculations in my case. I have had them in other parts of the body for as long as I can remember, but I never knew it could affect the muscles in the ears too. SOOOOO annoying, but harmless. It seems there are multiple causes for those muscles going haywire.

I have had the ear flutter but only under a couple of very specific circumstances, which I think were due to “crossed wires” in the brainstem (no doubt due to migraine):

Years ago I had a period of BPPV during which, whenever I tipped my head to the left or lay on my left side, I would get spinning PLUS thumping in my right ear during the spinning. Very weird!!

Then in recent years I’ve had two or three periods where straining my left arm (when trying to open a jar, for example) would cause a small flutter in my right ear. Oddly enough, using my right arm didn’t cause it–but using my LEFT arm caused a flutter in my RIGHT ear.

Otherwise I’ve only had very rare and brief ear flutters, nothing to speak of.

In the absence of any diagnosis from doctors for any of my symptoms, I attribute the “crossed wires” and dizziness to migraine. Personally I think it messes up our brainstems a little bit. (And the rest of our brains too.)

Nancy

I have had the ear flutter on and off for years. I don’t think it’s MAV related for me. I can actually bring it on at any time either by using a potato peeler or tickling the inside of my elbow! I avoid doing both because it’s not pleasant. I have never told anyone that before because it sounds mental but it must be those crossed wires again!

Hi Nubs, that’s so funny! I’m curious–is that using the potato peeler and tickling the elbow on the SAME side as your ear flutter, or the opposite? The brainstem is where things cross over from one side to the other. (That is why, for example, a stroke on the left side of the brain affects the right side of the body–the signals cross over on their way downward through the brainstem.) And I am of the opinion that migraine can damage the brainstem.

No, your connection between elbow-tickling and ear flutter isn’t a bit “mental.” Consider this: when I push just right on the top of my left big toe, especially with a fingernail or an opposite toenail (like when I go to scratch it), I get an instant, sharp electric shock in my left elbow and the top of my left hand simultaneously. How’s that for “mental”!? :slight_smile:

Also, when I very lightly rub the inside of my right wrist, I get a strong tingle on the right side of my scalp. I would think it would be the left side of my scalp, but maybe the wires got “double-crossed”! And in the past, I would get sudden burning or shocking feelings in my right ankle which would immediately cause my LEFT scalp to tingle. Touching something hot with my fingers would also cause a very strong left-scalp tingle. So there are lots of bizarre connections between distant parts of the body. It’s not just us, either.

Nancy

Hi Nancy,

I mostly get the flutter in my left ear when I use a potato peeler with my right hand (or rather I don’t anymore, I use a knife which also occasionally triggers it) but the tickling happens on the same side. I know I have a lot of overlap/ crossed wires in my brain as I have always had synesthesia. I see colours for letters, words and numbers, eg Friday is yellow. Again it’s not something I generally tell people about. Your sensations sound really odd. The mind is fascinating, isn’t it?

Nubs, that’s fascinating that you have synesthesia! Have you heard about the work of scientist David Eagleman on synesthesia?

A few years ago, I found out that I have a form of synesthesia called number-form synesthesia. I was astounded that not EVERYONE “saw” centuries, decades, and years in a specific spatial relation to their body–I had believed all my life (as such synesthetes typically do) that (for example) previous centuries were INHERENTLY, by their very nature, arranged in rows spreading out ahead/left of the person, as they are for me. I cannot conceive of, for example, the nineteenth century without “seeing” it at about the 10:00 position, with the earlier decades farthest from me; and the 20th century for me starts directly to my left, with 1900 kind of downward and farthest away, and the 1940s, 50s, and 60s rise up to meet me. (The 21st century has just tacked itself onto the 20th instead of starting a new row, but I personally am always “lagging behind”; when I think of 2013, it’s hard to see it lined up with me, as it should be, because it SEEMS like it should be to my right, in the future.) I ALWAYS thought EVERYONE saw years that way, until I read about this odd form of synesthesia!

I also see days of the week in a specific and unchanging circular form, in three-dimensional space; and the numberline has its own twists and turns, too. I can’t add or subtract or hear someone say their age, the air temperature, etc. without “seeing” those numbers in their proper place. My numberline shape differs slightly from 100 up depending on whether we’re talking age, air temperature, body temperature, or just plain integers.

It’s also weird that you have one “crossover” sensory symptom (peeling–with the peeler only!–with your right and getting the flutter on your left) and one same-sided symptom. Same here. You are right, the brain is sooo strange…

Nancy

Wow Nancy! Your synesthesia sounds a lot more impressive and interesting than mine. I have read a bit about it. I wonder if synesthetes are more susceptible to migraine?

Nubs, that’s a very interesting question. I wonder whether anyone has investigated it. Not much comes up when you search synesthesia and migraine, but this tidbit is intriguing:

yalescientific.org/2011/05/s … erception/

“Marks says that a new study will be conducted to link the biological mechanisms of synesthesia to those of migraine headaches.”

Hello,

I have the exact same thing. It’s like a clicking/fluttering after I speak and especially in relation to high pitched sounds. I have also been getting migraines in and around my left ear area which makes it worst. Now, both ears are starting to become affected.

It gets worse after I have a migraine episode. I’ve tried to explain to a few ENTs and they have suggested it’s either the Eustachian tubes (because I can reproduce the clicking sounds by pressing my tongue to the roof of my mouth) or the middle ear muscles.

I’ve also noticed that my ears will periodically feel like they have pressure in them, more so in my left ear and I feel off balance. I saw Dr. Hain in Chicago and he suggested it’s a middle ear problem but that my main issues are a mild migraine and my neck since there was nystagmus on the cervical test (something he found to be rarer).

I also have TMJ as I clench strongly throughout the night and my theory is that I do so more on my left side which causes more pressure and therefore migraines around my ear. I’ve also had BPPV from this which started in my right ear around the same time the headaches/migraine started in my left ear.

I realize that the Tensor Tympani issue may be anxiety based because I haven’t stopped focusing on my ears since all of this happened. I can also see how it’s neck/jaw related. I was dizzy this morning and what I realized is that 2 days ago I had a left ear migraine as I was about to start my menstrual cycle and also, last night I slept in a terrible position as I had my two children in the bed. Plus, I wasn’t able to get adequate sleep.

I would have to agree that it’s all migraine/TMJ/neck posture related and maybe attacking all three would help. I was very scared it was Meniere’s since sometimes I will get a spike in tinnitus like I did two days ago but it seems that spike was part of the aura of a migraine I was to experience the next day.

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I’m wondering if this might have been my problem all along.

And I really think it’s possible that anxiety from stress at work kicked it off …

… and once you get this, the anxiety related to the symptoms surely ensures you continue to suffer from it …

Has anyone received successful treatment for this?

Actually according to Wikipedia, it is thought that TTTS can cause “neurogenic inflammation” ie migraines. See: https://mvertigo.org/t/tonic-tensor-tympani-syndrome-and-its-close-match-to-mav-vm-symptoms/21991?u=turnitaround

This is very likely imho.

I’ve been getting persistent fluttering in right ear only for some time. That ear is also very sensitive to sound. If someone talks near that ear its uncomfortably loud.