What Do I Have? Loudness Hyperacusis? TTTS (Tonic Tensor Tympani Syndrome)?

[DumbEars]

Hey everyone - first post on here but I've read through these forums for ten years or so when my tinnitus started. Tinnitus Talk has been a great resource for me when I feel isolated or hopeless and I'm very grateful for the community.

My tinnitus is volatile, but it's always been present to some degree ever since the onset in 2013. In the last five years, though, I've had much more difficulty in managing what I believe is hyperacusis, most severely affecting my left ear. I've read a lot about loudness and pain hyperacusis on here; I have difficulty tolerating anything above 70 db in most tonal ranges, but I don't feel pain. So I would think I have loudness hyperacusis, but the way mine presents isn't totally described in the posts I've seen, so I'm not sure.

When noise is too loud for me, I feel an involuntary muscular response in my middle ear, assumedly the tensor tympani tendon or one of the other related middle ear muscles. When I'm not hearing a loud noise I don't experience this muscle spasming an unusual amount, but every time anything my brain considers to be too loud hits my left ear, the muscle contracts in sync with the sound, creating a very uncomfortable and disruptive sensation. I have also noticed that I experience symptoms in my left eye when this happens, twitching and involuntary movement.

I'm wondering if this is what people with loudness hyperacusis typically experience. I'm going to be starting usage of in ear sound generators to try to rebuild my sound tolerance soon, but I'd like to be sure that what I'm experiencing is in fact hyperacusis and not some separate tendon/muscle sound sensitivity issue that would need to be treated differently. Has anyone here experienced the type of response in the ear I'm describing and seen benefit from treatment with sound generators? Are there alternative treatment methods you believe I could benefit from instead?

Thank you.

 

[DimLeb]

I have almost exactly what you're describing. I believe it's a middle ground between hyperacusis and TTTS. For me it started happening within a month since my tinnitus started, 1.5 years ago and still happening today.

I also don't have any pain or reactive tinnitus, but as you said, it makes a very uncomfortable sensation. Except mine happens in the opposite situation. My left ear (mostly) starts twitching/spasming continuously when I'm in relative quietness and I start hearing a person talking in the direction of that ear, which can be very disruptive and uncomfortable, like the inside of my head is vibrating. While the right (other) ear, spasms not continuously, but once at the start of short sounds (cutlery, knob switches, scratching my face etc) in relative quietness.

When I'm around more noise and louder situations, all these disappear for some reason.

For reference, my tinnitus is generally mild, but fluctuating on a daily basis, with good and bad days and also from idiopathic origin. I've tried to "build more tolerance", by exposing myself to more sound, but it doesn't make a difference.

I strongly believe that it's a myth that this kind of sensitivity/hyperacusis can be treated with more noise. There are no research papers proving that, and people around here haven't been helped a lot by white noise generators as I read. I also haven't found anything that improves that.

Just like how you can't treat an eye twitching with seeing more bright lights or something. Maybe you can try out taking some Magnesium (I've tried that with no result) or something with muscle relaxing properties. Thing is, it's difficult to determine what causes that, either being a muscle, the cochlea or the nervous system itself.

 

[stacey]

@DumbEars, this is exactly what I have. Loud tinnitus, severe hyperacusis, and TTTS that spasms to almost every sound. I recently almost felt I was going to end up in the hospital because it was just too much... still struggling. I don't feel optimistic but trying to hang on :/

 

[Void]

I have this exact same issue and I had been researching it for so long until I found out about TTTS. Anytime I am in my car listening to slightly louder than usual music or if I sing in a certain pitch, my right ear will feel muted, or like it's not vibrating properly. If I turn the music down and stop singing, it goes back to normal. I have been extremely distressed over this condition! The ENTs usually look at me like I'm crazy when I try to describe what it feels like. It's so strange.

 

[Sammy0225]

From your description it sounds like TTTS and loudness hyperacusis which go hand and hand. I was able to significantly reduce my symptoms by natural sound therapy. I didn't use ear generators for this.

 

[GG_Ear]

From your description it sounds like TTTS and loudness hyperacusis which go hand and hand. I was able to significantly reduce my symptoms by natural sound therapy. I didn't use ear generators for this.

This is great that natural sound therapy helped you. I was talking to an experienced audiologist and she said that the best proven thing for TTTS is CBT and techniques to reduce anxiety and stress. Also gradual reintroduction to natural sounds and not over-using sound protection (i.e. only using when deemed absolutely necessary).

 

[Josh59]

I have a question about tonic tensor tympani syndrome and/or contractions of the tensor tympani muscle in relation to sound.

Can the increase in tinnitus when there is sound depend on contractions of the tensor tympani muscle? Or are these increases more related to the inner ear and the auditory areas of the brain?

 

[mzrach03]

@DimLeb, have you noticed any improvement with the vibrations?

 

[DimLeb]

@DimLeb, have you noticed any improvement with the vibrations?

Unfortunately, no. My TTTS is still the same—some days are worse, and some are a bit better. A few months after that message, I also developed MEM, which involves hours-long episodes of spontaneous spasms, flutters, or vibrations, usually triggered by yawning, burping, and similar actions. I have been dealing with that for about two years.

Even more concerning, in the last few weeks, I have started experiencing intermittent distortion or reactive tinnitus that seems to be triggered by external sounds.

I am not sure if all of this is connected, but the latest issue with the distortion feels like a significant setback.