Learning About "Tonic Tensor Tympani Syndrome" Greatly Reduced Ear Pain and Hyperacusis

For me, one of the most frustrating things about my hearing damage is the extreme sensitivity to sounds. Loud sounds will increase the volume of my tinnitus, so I started wearing hearing protection everywhere and avoiding loud places. This seemed to cause a negative feedback loop where I started becoming sensitive to even moderately loud sounds.

My ears would always feel painful and tight, and I would be constantly trying to "pop" my ears. Anything that would cause my ears to feel pain would make me super anxious, and I would focus on it and not be able to relax, convinced that every time I felt pain, that I had somehow done more damage.

I mentioned this to both of the audiologists I had seen, and neither of them told me about Tonic Tensor Tympani Syndrome (TTTS). I really wish they had, because once I learned about it, it became much easier to not focus on the ear pain. Basically, your ear tenses up due to the perception of loud noise, or even sometimes the anticipation of the noise. When you have hyperacusis, everything seems too loud, so your brain is on overdrive trying to protect your hearing, and so the muscles in your ear which normally only are used when things are very loud become overworked, which can lead to pain and other odd sensations.

This article is what really helped me.. in particular, this sentence was really helpful: "It does not harm the ear to experience TTTS, and even though the TTTS symptoms can seem as if the ear is being damaged by some sounds, this is not the case."

Just learning about the reason for the pain, and learning that pain does not necessarily mean damage was caused, really helped me relax and not stress out when my ears felt weird. I still feel ear pain sensations from time to time, but I do not obsess over them.

This has build into a *positive* feedback loop, where because I'm NOT obsessing over it, and can reassure myself that it's just my muscles being tense, I can relax and the symptoms tend to go away quickly. Being less scared of every sound also seems to have brought my hyperacusis down somewhat.. before I learned this, life just seemed really LOUD, but now things seem a lot more normal. I still have sensitivity to louder sounds wear hearing protection in loud and/or unpredictable environments, but I feel like things are settling down a lot more. I wish I had known about this earlier!

Here's the link to the article I read that really helped me: http://www.hyperacusis.net/other-factors/tensor-tympani-syndrome/

 

Totally agree with you @sjtinguy. I feel like an absolute idiot for not working it out earlier, although I had hoped seeking professional audiological care would lead to a diagnosis, but no. An audiologist gave me sound tolerance tests and tympanometry when they should not have, even though I clearly described my symptoms. They made it worse.

Really, should we have to diagnose ourselves? Are these professionals that moronic and clueless? As far as I'm concerned all but a fraction are a waste of time. I would only trust specialist experts like these: http://www.dineenwestcottmoore.com.au/specialist-services/acoustic-shock#what-is-as/

@Greg Sacramento put me onto that hyperacusis.net link and it all clicked into place for me. Just to know it isn't causing further damage is empowering. Things are beginning to turn around slowly. I know for a fact I have TTTS and maybe ASD (they are linked anyway). I am able to treat myself both from a psychological point of view, but also via sound desensitisation. Who needs these incompetent professionals? I've had enough of all of them, not just audiologists. ENTs too with their beloved microsuction, which is something you DON'T do to someone with TTTS or ASD, especially after they describe their symptoms.

I have some very effective benzos on stand by in case my symptoms cascade into a horrible situation. So far have only had to take them once. In fact, when I feel my middle ears start to seize up, it helps knowing that I could just take one and it will go away. The mere thought of taking them relaxes me, so I don't end up needing to. It's quite bizarre how it's psychosomatic and can be controlled by positive thinking, well, to an extent.
Lately, my T has been better and even my H has improved.

 

It might be safer.

Me too. My H symptoms are relatively new. Once I read about TTTS, I instantly recognized my symptoms.

 

I used to have TTTS. It took over 6 months for it to get better, and it was mostly gone after 12 months.

 

My TTTS haven't got better not a little after 15 months. And tinnitus got worse again the last week. All in all I would say that in the above time span my t has gotten progressively worse in terms of added tones + volume from 1/10 to 5/10 + reactivness + dysacusis. Not even a small positive progression...

 

Did you experience setbacks like new acoustic traumas? Have you tried staying away from the moderate noises like that of a vacuum cleaner?

 

The second audiologist I went to has tinnitus herself and also helps facilitate a tinnitus support group.. I don't know why she didn't tell me about TTTS when I described having ear pain sometimes even when the ringing was not increased. I wish she had, but luckily I found the information myself.

 

Did you do anything that helped your recovery, or did it just improve over time?

 

ASD is excessive middle ear contractions, the stapedius and tensor tympani. The tensor tympani contracts to noise. The stapedius is an acoustic reflex that is triggered by noise. The tympani reflex is a protective reflex. TTTS can include tinnitus, the ear - clicks, flutter, feeling like ear is block or fullness, muffled or distorted hearing, numbness or burning. Irritation of the trigeminal nerve and this can give sensations to the cheeks, neck and TMJ area.

Studies show that TTTS and ASD is often caused by TMJ and upper cervical spine disorders. This can involve the C1 and C2 being out of alignment. It can be caused by whiplash, injury, falling down, a history of bad posture with too much forward head bending, dental whiplash causing TMJ. TMJ and misalignment of the upper spine can happen together.

I received my TTTS and ASD from dental whiplash causing misalignment of C1 and C2 as well as TMJ. My TTTS and ASD is mostly gone, but it does sometimes rises again. It's depends on how I baby my neck and TMJ as well as stress. Most with TTTS and ASD otherwise will see complete recovery within months.

When I think of tinnitus, I think about the neck being out of line. The C1 and C2 area in particular. This can cause more severe tinnitus, ear problems, hyperacusis, TTTS, ASD, TMJ and a full list of other problems, including nerve problems, sore neck muscles that may become unbalance or have pressure arise from the upper spine.

 

This link supports my views above, but there's many more heavy to read professional research articles.

http://hearinglosshelp.com/blog/do-i-have-tonic-tensor-tympani-syndrome-ttts/

 

@Samir I don't think that we really have different views on ASD and TTTS. I have posted the studies that you refer too.

Your above statement may have validity. I don't know. Some new thoughts by researchers is that most with tinnitus do have at least a very small amount of hearing loss. My new tinnitus is physical and audio testing showed that I have very little increased hearing loss from testing that was performed after first onset about 7 years ago. Any very slight newer hearing loss may partly be an age factor for me and may be associated with my cervical facet arthritis.

When I used the term TMJ to my dentist, he said that term is no longer accepted. He said it's all TMD. There's many plays on word as 'objective, subjective, TMJ, TMD, reactive, etc. There are many reasons why some get tinnitus and other related problems. Tinnitus can be caused by body imbalances such as being posture related and physical trauma.

Thanks for the input, as myself and all of us are not always right. I would expand more in thought with this post, but my T is taking an even more turn.

 

@Samir Just to note, my post that you made reference to was meant to be directed to @Gman where he also commented to me. My bad, I didn't use his name. This link shows more detailed hyperacusis factors and other contributions to this subject matter.

Your quote - "Tinnitus can accompany many of these symptoms, but it's not a sub-type of TTTS." I don't see any disagreement from my short statement in post above. With physical T, cause and effect is more parallel.


http://www.noiseandhealth.org/artic...;issue=63;spage=117;epage=128;aulast=Westcott

 

For me my TTTS correlates with my sensitive. If something is on the cusp of bothering my H, I experience TTTS. It doesn't bother me too much tbh.

 

I think we can agree that TTTS and ASD suck big time. It’s just another layer on top of T and H.
I never thought psychosomatic was really anything other than jargon. But this experience has taught me it is real. Some of it can be consciously controlled and some can’t. It’s pretty stubborn.

My perspective is that TTTS/ASD, T and H are all interconnected. When the TTTS and associated symptoms flare (which are very unpleasant and painful - not just fluttering) usually I get a T spike, but not always. Same with H. I’m not sure how this works as the tensor tympani and stapedius muscles are in the middle ear, not cochlear (which is where I assumed most T originates?).

I had a nice week and a half of being lulled into a false sense of security and actually began to habituate. A slight set back yesterday and now I’m enjoying a worse than usual T spike. It’s a tad demoralising as I can’t seem to predict it or get past it. There were no significant loud noise events except for a speaker phone conference call at work that was a little on the loud side but not significant.

 

I guess I meant psychosomatic in that it is triggered by your thoughts because of how you perceive and somehow feel threatened by sound. It's as much psychological as it is physical. If you feel sounds are damaging, or negative, or anticipate loud sounds the symptoms get worse. The muscles can seize up by thought alone. And on the flipside if you think positively and in a calming way, you are able to reduce it to an extent (although I have discovered there's a limit to how much you can calm it by thoughts alone). If it is meant to be a protective mechanism for your hearing, then it's really dysfunctional.

Definitely. They just want you out and pay then see the next patient. What ever happened to quality of care? My local doctor had never heard of it, but still prescribed me what I wanted. So at least there's a level of trust in my self diagnosis.

Same with me. I can isolate the muscles in both ears and make them kind of shudder, which makes my hearing go weird.

True. If it's not killing you, they don't care. I wonder if they could hear it with a stethoscope?

Well, yes. I tend to get a pains first. They can be along the side of my tongue and/or back of throat, along the jaw, inside and around the ears. I might get a few thumps in the middle ear here and there sometimes. I feel the muscles starting to contract, cringing inside, causing a tense fullness and ultimately one ear, if I can't stop it, seizes up. This causes horrible hollow imbalanced hearing because of conductive loss - lower frequencies are just not being transmitted to the cochlear. A hum or whoosh sound/sensation accompanies it. Sinuses swell up. Then the T usually spikes and ears feel very sensitive with H makes things get louder. I get neck pain and dizziness too. The pulsatile hum will start up too. Really crappy.

But it's not clear how TTTS/ASD can make T spike, as they are to do with middle ear. Also, according to the experts, experiencing these symptoms do not harm the ear, therefore shouldn't really cause a spike. For me, I kind of think it's more like an irritation than too much incoming information being processed, but it's an interesting thought.

I was thinking that somehow consciously and subconsciously your brain is interpreting sounds or anticipating sounds as potentially damaging, therefore goes into protective mode. Anxiety, startle reflex, being on edge, hypervigilance and negative thoughts just feed it.

 

Read this case study (or ask @japongus about these things) . There is a lot we don't know about the middle ear. There exists no such thing as experts in this area yet sadly. The middle ear has simply been neglected.
https://www.frontiersin.org/articles/10.3389/fneur.2017.00420/full

 

@lapidus Informative article. The discussion section has been agreement upon by many - pain does connect to the cervical complex and temporal.

 

Wow awesome. This is great! Better than any doctor's diagnosis!! Thanks for the link @lapidus. This is it then without a doubt.
Acoustic shock injury with post-trauma trigeminal-autonomic activation. But I already had T and minor fluttering TTTS and H before this. It's so spot on in every detail.

"In most cases, these symptoms are temporary and disappear within a few hours or days following the acoustic incident. However, in certain cases, they can become chronic and seriously affect quality of life"

This has happened to me multiple times since it started, so I seem fit into the latter category.
If only they had a treatment section at the end.

 

Yeah, I just wish there were thousand more case studies like this so they could get somewhere treatment wise but sadly it is, like I've said, a neglected area of research.

 

@Gman Treatment - Magnesium and B12 made a difference for me. I think Botox wears off in 2-3 months.

 

@Greg Sacramento I have been taking B12 and magnesium too. The only thing that makes it go away is clonazepam. Even if it happens, say, once every 1-3 weeks, I don't want to be having to take this stuff.

 

Thanks so much for posting this, reading this thread has made my night.

I'm currently suffering a setback, from not protecting my ears around many loud / excited people in a small house (similar situation to what @Samir mentioned above.) My cousins are loud, and many times were talking right into my unprotected ears (was trying not to overprotect), but I know that can't cause damage. My symptoms are everything that TTTS describes, and the T has spiked right along with it. Fullness, pain, increased sound sensitivity, more intrusive T. I was even having those flutter / heartbeat sensations in my right ear, which I haven't gotten in a long while.

Do you think it's inflammation? I'm starting to think that those muscles become inflamed from over-use, and lowering the inflammation helps get back down to baseline quicker. So I've been taking omegas, eating anti-inflammatory foods, etc. I'm seeing this as something similar to a flare-up. Also, do you think TTTS causes a temporary threshold shift? Our thresholds do shift when these muscles are overworked / inflamed, and cause muffled hearing / other weird symptoms.

I've been contemplating prednisone after this latest 'acoustic trauma' of mine, but your thread tells me that I should just wait it out. It's not like I attended a 120dB concert or something, I was at my aunt's house, and everyone was talking too loudly for my hyperacusis-ridden mind, haha. So I think I'll just wait it out, this is a muscle thing, no damage done (even though my T and fullness feels monstrous right now.) It's very tricky though, knowing for sure whether or not damage has been done. I suppose we can use the metrics that are already in place, 85dB + duration, and all that.

 

How is your TTTS these days?