Renewing Tonic Tensor Tympani Syndrome (TTTS) "Interest"

Discussion in 'Support' started by Paul1980, Jan 21, 2022.

    1. Paul1980

      Paul1980 Member

      Tinnitus Since:
      Cause of Tinnitus:
      Music, prescription drugs

      I have had tinnitus since 2010, ramping up in 2017. I have a feeling I read about TTTS before, which is "is an involuntary, anxiety-based condition where the reflex threshold for tensor tympani muscle activity is reduced, causing a frequent spasm. This can trigger aural symptoms from tympanic membrane tension, middle ear ventilation alterations and trigeminal nerve irritability [and tinnitus].

      This seems to be one of the most plausible explanations I have heard for my issues. I have had many of the symptoms, especially early on, like vertigo, and then when it ramped up, I had the strange, unexplained pain. I believe I have been unaware that this could be part, or all, or the problem.

      I have read some of the other threads on TTTS on Tinnitus Talk, and from what I gather the answers are as elusive as tinnitus itself, and the treatments also elusive. But I feel like it is something that needs more attention.

      Does anyone else have a new/renewed perspective?

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    2. DimLeb

      DimLeb Member

      Tinnitus Since:
      Cause of Tinnitus:
      Idiopathic Cochleopathy or Maybe Loud Music
      @Paul1980, I'm wondering about it as well. My TTTS started about 4 months after my tinnitus onset / 1 month after my tinnitus worsening (from super mild to just mild). So I have had it for around 6 months now in both ears.

      The weird thing is that the spasm is acting in a different manner in each ear and it doesn't trigger all the time, but at some high pitched short sounds, or at some voices/vowels in a quiet environment. If I'm around more sound (outside etc), I think it stops happening.

      I believe TTTS is a degree of hyperacusis too, because sometimes it feels like the spasm comes from a deeper level, like it involves something more than the tensor tympani. Maybe the nerves' system itself? Anyone experiencing similar stuff?

      I now think that it is not so connected to anxiety. TTTS still goes on even though I gradually lowered my anxiety and panic levels, plus habituated to the new condition.

      That's my 2 cents!
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    3. Sam-P

      Sam-P Member

      Tinnitus Since:
      Cause of Tinnitus:
      COVID-19 Infection
      Hi @Paul1980. I’m also trying to find information on this fluttering sensation. I developed unilateral tinnitus in March post-COVID-19 infection and now in the past 3 weeks have had bouts of left ear spasming (the tinnitus ear). I saw an ENT who discussed tinnitus but dismissed the spasming and referred me for an MRI. I have no idea what’s going on and it’s hard to find any info. I hope you’ve had more luck with info gathering.

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    4. D'Angelo

      D'Angelo Member

      Tinnitus Since:
      Cause of Tinnitus:
      Acoustic Trauma/Ear Infection
      The best paper on this is the Norena paper:

      An Integrative Model Accounting for the Symptom Cluster Triggered After an Acoustic Shock

      I believe my hyperacusis and ear pain are from the tympani muscle being contracted, causing inflammation. Which may inflame the trigeminal nerve, causing a vicious cycle of inflammation and central sensitization.

      So I've decided to go the medication route instead of trying to heal naturally (which I believe is very difficult to do if your H is moderate to severe).

      I'm currently taking Clomipramine and Gabapentin. I'll also add a non-narcotic muscle relaxer and an alpha blocker if those two don't work. Flomax and Skelaxin are good for those two. I'll go up to the highest possible doses on everything to escape this fucked up condition.

      I know a lot of people are on this forum are hesitant to try medication. But I don't see what possibly could be worse than extreme hyperacusis and tinnitus.
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    5. Nobody19

      Nobody19 Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      How exactly do the medications you mention help with what that paper describes?

      I've wondered myself how muscle relaxants could help with TTTS and hyperacusis (if the Tensor Tympani is involved there). My ENT didn't get further than "it may help..."

      I'm following your progress, good luck!
    6. TLion

      TLion Member

      Tinnitus Since:
      Cause of Tinnitus:
      stress/loud concert
      Please keep us informed how the medication is working. I’m also having TTTS since I withdrawed from Paroxetin and as withdrawal symptoms I had severe anxiety. Since then (2 months ago) my ears develop spasms that make tinnitus worse.
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    7. Subjarna

      Subjarna Member

      Tinnitus Since:
      Cause of Tinnitus:
      Noise Induced + Stress
      I have had TTTS for more than a year and it started the same day I noticed issues with my clogged ear and worsened hearing. The blocked sensation lasted for about half a year and it was insanely annoying. Fortunately it resolved itself but the fluttering and clicking in the ear remained just the same. I wonder if it's due to damaged synapses or hair cells. I think it's one of those.
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    8. Julian C

      Julian C Member

      Tinnitus Since:
      Cause of Tinnitus:
      Hello, first time I am posting on Tinnitus Talk. I found it after looking for a place to discuss this particular problem. After doing some research I think what I have is TTTS. I've had TTTS for around 3 years though I had a massive break in TTTS symptoms after around the 1-2 month mark until recently. I've seen multiple ENTs who have looked at my condition early on and written it off as TMJ related saying that it might heal over time if I don't clench my jaw at night and so ever since I have been using a dental splint and cut out coffee completely since I heard it can potentially trigger symptoms.

      My thumping is in the left ear with the right ear having a light permanent tinnitus which developed after a bad cold with lots of sneezing about a few months after my left ear problems. If I had to describe it, the left ear thumping itself sounds like a plugged in microphone being dropped lightly onto the floor. The thumps can be anywhere between a single thump every few seconds to rapid thumps. Flare ups can last up to several hours at a time but there are days where I sometimes don't have thumps (not sure why honestly). The usual trigger for the thumping appears to be posture. I have noticed several occasions where the thumps would flare up after I had dozed off while sitting upright and in the mornings if I happen to be sleeping on that side e.g., left side with my head firmly against pillow because when sleeping directly on my back I tend to have less triggers, perhaps because it takes pressure off the side of the face.

      During the long period of time (2 years) where I didn't have regular TTTS, I noticed I would have single flare ups once in awhile which would go away if I did the Valsalva Manoeuvre and hear a pop in the left ear. These flare ups would mainly be caused by uncontrolled burps or yawns so it became a mission of mine to control every burp + yawn so that it wouldn't affect my ear.

      What I have done since the beginning of my symptoms is keep a health diary each day to record the symptoms in the hope it might be of some use to an ENT in troubleshooting my problems, though it is also so I have a guideline for when my symptoms occurred and what may make things better (if anything). From the look of it, initially there was a regular feeling of blocking/fullness in the left ear which made my local GP think that the issue might be related to an ear infection. About a month later, after having no success with antibiotics, I discontinued them and waited for an ENT appointment which is where they discussed the possibility of it being TMJ related.

      My most recent flare ups of TTTS appear to be posture related and I have a hunch it might have something to do with the spine but it's hard to say. Can't think of anything else because there were no loud sound triggers at the time. I may look into having a qualified chiropractor adjust the upper spine and see whether this produces any results but I need to do more research on this.

      Other than that, I can only say that sometimes you might get lucky and have years without TTTS. Hardest part is dealing with the negative thoughts which usually stem to thinking about the rest of your life having these problems. Thinking about people who don't have tinnitus/TTTS does tend to make things worse so it's better not to think about it overly much.

      Good luck everyone. I hope we can revive discussion about TTTS and potential success stories.
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