I Think I'm Developing TTTS (Tonic Tensor Tympani Syndrome)

[JohnAdams]

Just starting talking with a coworker and the sound of my voice is making my right eardrum spasm and this has never happened to me before.

Is this TTTS? Anyone else develop this 1 year + after their tinnitus onset?

Is this a good sign? A bad sign?

Any info or experiences would be appreciated.

Also, I need to add that, my tinnitus in that ear right now is 99.9% gone and I can only hear a very faint tone when I plug that ear. Last night I started a new supplement regimen last night. 1,000 mg of curcumin, a spirulina tablet, and 1 capsule of ECGC.

 

[Contrast]

Any middle ear muscle disorder gets called TTTS. These conditions aren't even understood much at all.

Sorry your screwed btw

 

[Daniel Lion]

Just starting talking with a coworker and the sound of my voice is making my right eardrum spasm and this has never happened to me before.

Is this TTTS? Anyone else develop this 1 year + after their tinnitus onset?

Is this a good sign? A bad sign?

Any info or experiences would be appreciated.

Also, I need to add that, my tinnitus in that ear right now is 99.9% gone and I can only hear a very faint tone when I plug that ear. Last night I started a new supplement regimen last night. 1,000 mg of curcumin, a spirulina tablet, and 1 capsule of ECGC.

Strange... How long was the spasm?

My instinct tells me, you should be fine... Report if this happens again.

What is ECGC?

My hyperacusis has been awful, my voice hurts me...

I think my stapes are fucked... but I am gonna hang tight before anything drastic and see what happens.

Take care bud... don't worry... 99 percent is huge, remember that.

 

[JohnAdams]

Strange... How long was the spasm?

Only while I was talking. And it stopped. EGCG is a green tea polyphenol supplement.

 

[Backpacker]

If you mean the "butterfly trying to get out" feeling, I developed that one month after my first tinnitus. When it started I was on betahistine and lorazepam. (Yeah I know now all that is sh*t). I get it 1-2 times per month and it doesn't last more than 2-3 seconds (but mine is not provoked by noise). Just a thought, both spirulina and EGCG have dizziness as a side effect. And it says spirulina should not be taken with blood thinners. I know you're not dizzy but just saying, because hearing and balance are connected.

 

[RaZaH]

I get that from some supplements , most notably bioflavinoids.

 

[GregCA]

I think my stapes are fucked...

What does that mean? And why would you think that?

 

[Daniel Lion]

Well... my trauma after already having hearing loss, the one that really broke my ears and was the onset of tinnitus and hyperacusis, was brought about being exposed to industrial machinery where I felt a extremely strong occlusion effect.

My instinct, my gut, knows the vibrations were strong enough to screw up the middle ear dynamics. After the exposure, I got an infection in my right ear. It was so traumatized that my ear drum was infected. I took antibiotics and the infection went away but the tinnitus and hyperacusis have stayed.

Tinnitus is easy for me to understand. My audiological charts are really bad, making me a candidate for hearing aids. Eventually I will post once I scan them, but they look like a ski slope. Easy to understand in that... I believe the tinnitus relates to my hearing loss and trauma, and I am optimistic that I in a few years I may be able to get some hearing back with hearing regeneration drugs... or just keep getting better at coping which I will do regardless.

The hyperacusis is a doozy. It's really a rare and vicious and unusual disorder which I and some other folks have...

My plan is to be as healthy as possible, exercise, and do relaxation exercises to keep me chill and see if it gets better. I am going be patient.

So going full circle, sorry for being so long winded... I think my round window and stapes may have been compromised and hurt due to the occlusion effect. I think the stapes may be moving too much, freely, and this is not normally how they function and it is hypothesized by Dr. Silverstein that this is a contributing factor to some debilitating cases of hyperacusis. If things don't get better over say two years, Silverstein in Sarasota has a surgery that I may benefit from.
I have inner and middle ear issues... Sorry if that was convoluted. And thanks for asking.

 

[Daniel Lion]

Only while I was talking. And it stopped. EGCG is a green tea polyphenol supplement.

What does that mean? And why would you think that?

Check out my above answer... what do you think GregCA?

Is there away they can have a look, like a scan, without cutting in, to see if my staples are hyper mobile?

 

[GregCA]

Check out my above answer... what do you think GregCA?

I don't think there's anything in what you describe that points to your stapes. It could be many many things. Why focus on the stapes? Perhaps it's the malleus? Or the incus? Or none of the ossicles?

What you can use (which is what I went through) is a CT-scan to check for bone changes. My stapes was showing some radiolucencies. That indicated a variation in bone density at my stapes, which is a marker of otosclerosis.

I don't know that you can measure its mobility without invasive methods: my surgeon thought I could also have a malleus fixation but he was going to confirm that during surgery (since I was already going to go under for my stapedotomy). He tested the malleus mobility and decided I didn't have a problem there, so he didn't touch it.

Do you have any conductive losses?

 

[Daniel Lion]

I don't think there's anything in what you describe that points to your stapes. It could be many many things. Why focus on the stapes? Perhaps it's the malleus? Or the incus? Or none of the ossicles?

What you can use (which is what I went through) is a CT-scan to check for bone changes. My stapes was showing some radiolucencies. That indicated a variation in bone density at my stapes, which is a marker of otosclerosis.

I don't know that you can measure its mobility without invasive methods: my surgeon thought I could also have a malleus fixation but he was going to confirm that during surgery (since I was already going to go under for my stapedotomy). He tested the malleus mobility and decided I didn't have a problem there, so he didn't touch it.

Do you have any conductive losses?

Good question, I don't honestly know.

I also don't really have an ENT.
I will consult with one in neighboring Thailand eventually when I have the money to go.
I was reading up on Silverstein and his hypothesis to hypermobile stapes being the cause of some hyperacusis. I am gonna wait and see as I said before.

I really appreciate you getting back to me GregCA.

I am not freaking out, just hypothesizing and trying to figure out what's going on.
I will keep you posted.

Thank you again for weighing in,
Sincerely Daniel

 

[linearb]

have you ever had your magnesium levels checked, and do you take it in any form?

 

[Daniel Lion]

have you ever had your magnesium levels checked, and do you take it in any form?

Take magnesium daily.

It's a bloody mystery, and a debilitating one.

I am remaining optimistic and doing my best for my family.

Thanks for checking in linearb.

Time will tell, and eventually a good doctor.
For now, since I don't really have access to a doctor, I am going with time, protection, and diet.

Cheers

 

[JohnAdams]

UPDATE:

Haven't experienced this again since it happened.

Any thought?

 

[JohnAdams]

have you ever had your magnesium levels checked, and do you take it in any form?

No, need to though probably.

 

[linearb]

No, need to though probably.

my thought is that muscle twitches across the board are very common when magnesium depleted, because magnesium antagonizes glutamate, so it's basically a muscle chill-out element. Being in a stress state for a long period of time will slowly burn up cellular magnesium faster than it is replenished.

When I was having some TTTS and a ton of eye twitching from benzo w/d, I just started taking Calm mag.

Anyway, if this seems to be over, I would just... stop thinking about it until it happens again? Random muscle twitches happen to me all the time, ears, eyes, limbs genitals and all.

 

[Simon Czt]

Since I started taking curcumin and spirulina, I have had spasms in my left ear (I feel it mostly after an effort, and it's sometimes in rhythm with my heart, but only for a few seconds), but it may also be related to the fact that I haven't taken my magnesium in the last 5 days when usually I never forget to take it.

It's been 3 days, I started taking magnesium again today and in the worst case I see my ENT in 3 days, but it's quite annoying.

I also have problems with my neck, eustachian tube (I have the feeling of a blocked ear on the left) and maybe my jaw, I don't really know what to do anymore.