Tonic Tensor Tympani Syndrome (TTTS): Some Success with Chiropractic Treatment Followed by New Issue

Okay, quick backstory.

I got a nasty ear infection in February of this year. I took antibiotics and it cleared it up.

However, I found that my right ear had episodes where it would throb every few seconds. It was incredibly distressful. It was specifically triggered by yawning, burping, hiccupping, or moving ever so slightly in the wrong way.

I went to see an ENT in March. She said there was nothing wrong with my ears apart from Eustachian tube dysfunction and that it would clear up on its own. It didn't. Upon research, I narrowed the cause down to possible TTTS.

At my mom's suggestion, I went to see my chiropractor. After about a month of neck adjustments, I'm happy to say the throbbing episodes have ceased for the time being.

However, now I have a new problem.

My right ear is now very sensitive to certain loud/sharp sounds (doors creaking, metal clanging, etc...) which will cause my ear to throb/flutter, but only while it's happening.

I notice that when I touch the right side of my face, near mouth, my ear also flutters.

Also, while I can still hear fine out of that ear and it's not muffled at all, it almost feels "full." Like I think I can hear just as well out of that ear as my other one, but it doesn't "feel" like I can, if that makes sense...

I saw my ENT again today. I explained everything I just told you about. She said there was nothing that could be done, as tendon severing would be far too risky unless the situation was positively debilitating to my life.

At worst, it is an annoyance to me. I'm autistic and very sensory. My ears are otherwise healthy.

I will probably continue to see my chiropractor for a while. Hoping in time this issue somehow resolves itself. It's preferable to the constant throbbing episodes, but still not ideal.

Anyway, thought I'd share my experience here. Maybe it'll help you. Maybe it won't. Maybe I can learn something, too.

 

The new symptoms you’re describing are probably still related to tensor tympani issues. The sensitivity to noise happens to me - my ears will thump/crunch/flutter to my voice, doors closing, dishes, silverware, etc, but only while the sound persists, or immediately after it’s done (for example, my ears often thump once after I finish a sentence). I also get it when touching certain parts of my face or my ears.

Mine seems to be mainly stress and anxiety related, but hopefully these adjustments will continue to help you! I’ve also been told it takes ears a very long time to heal. But from my understanding, TTTS often goes away eventually. It understandably is very upsetting and annoying in the meantime though, mine bothers me too.

 

Thank you so much. That honestly makes me feel a little better. Needless to say, this has been quite distressing to deal with. I'd like to have some hope that with time and perhaps some more adjustments, this will pass, or at least become more manageable.

Hopefully in time your symptoms will start to phase out, too.

 

I have this same feeling after my recent sinus infection. My left ear always feels exactly like yours. Has it gotten any better? I’ve had this feeling since February of this year. Sometimes my ear drum flutters when I move my jaw. My ENT thinks it could be TMJ related. What exactly does your chiropractor do?

 

Do you think this could be a form of hyperacusis?

 

Hi @chelledoggo and @PennyCat,

You are the first two people I've come across on forums that are describing the exact symptoms I have.

I've had 'regular' tinnitus since around 2017. In my left ear only, due to a concert I was playing (drummer). My left earplug fell out, but I decided to keep playing. The day after, a ringing sound that hasn't gone away ever since. It's a bummer, but it doesn't bother me at all anymore. In fact, it kind of felt like my 'final warning' to always protect my ears at all cost, and to be a grown up about how to treat my body and mind. So now it just feels like a refrigerator humming in the background, I hardly ever notice it anymore. Even though the first year(s) or so, it really freaked me out and it took me some serious mindwork to accept it. Having had some anxiety issues in the past, this was really difficult in the beginning. But now it's really fine. My tinnitus is always the same volume level by the way. Never been different.

The next part, unfortunately, is that I have a strange clicking, thumping, scratchy, itchy feeling everytime I perceive sound on a certain volume in the same ear. And it started about 2-2.5 years ago. It's exactly what you described word for word: "The sensitivity to noise happens to me - my ears will thump/crunch/flutter to my voice, doors closing, dishes, silverware, etc, but only while the sound persists, or immediately after it’s done (for example, my ears often thump once after I finish a sentence). I also get it when touching certain parts of my face or my ears."

And since this year, I also experience a squishy sound when I swallow, and when I yawn, it feels like my left ear takes a second longer to 'open'. It flutters when I do that. Whenever I've had my ears used a lot the day before, it can also quite hurt. Like a sharp pain, like a muscle cramp. I also sometimes experience a strange 'fullness' or pressured feeling. And whenever I chew tough things (big crackers, carrots), the same symptoms occur. It's like something builds up, builds up, POPS, and then has that crackle feeling.

In my case, it never flutters, crackles or anything when it's quiet. So it only gets triggered by sound, scratching of the face, chewing, yawning, swallowing.

It's been my absolute number 1 frustration for a long while now. I've actually cancelled work (as a touring musician) this summer, and quit my part time job, because I was just so overstimulated constantly. Especially working as a professional musician, being confronted with this annoying physical frustration all the time. I’m so sick of it.

I've seen countless ENT's in Holland (where I live) and Belgium. I've spoken to three more in the UK and the US. None (!) have come up with a proper diagnose, nothing. I've gotten a tube placed in my ear last August (because it might be pressure thing), didn't do a thing. I've actually undergone surgery last January, a middle ear inspection was performed and a small piece of cartilage was removed that was attached to a facial channel (if that's the correct translation). The theory was: the piece of cartilage was thumping against my stapedius muscle, and was the cause of the problem. I got operated, and guess what... the symptoms were GONE. I couldn't believe it. For about 3-4 weeks I was incredibly happy, but still felt cautious. And not without reason, the symptoms returned unfortunately.

My theory operation wise, is that the tiny muscles were a bit beat up after the surgery, and 'stayed in place'. If that makes sense. Like they were stiff, tightened up, and weren't able to crackle or pop anymore. After they healed, and the trauma disappeared, the underlining problems came back to the surface. It could also be the anaesthetics. A doctor I spoke to had some other patients that had symptoms relief for a couple of weeks too.

I visited a upper cervical chiropractor about 6 times last March and April, and he gave my jaw a good shove, same with the rest of my body. My jaw actually felt better afterwards, but my symptoms feel like they got a little worse. I never had that swallowing sound before, but I do now.

Besides countless ENTs and a chiropractor, I've also met with/talked to a ostheopath (4 sessions), an orofacial therapist (3 sessions), two dentists, a vitamin specialist, a psychologist, an audiologist. I’m probably even forgetting some.

I'm going to get a treatment by a new dentist next week, he's going to sharpen my back teeth because there is a lot of pressure in the backside of my jaw, and the occlusion isn't great (the way your jaw closes). I wonder if this will help, apparently, it can get rid of a bunch of crazy things in your body, because your nerves constantly get overstimulated the wrong way when your jaw isn't properly aligned. And the trigeminal nerves in your jaw are directly connected to your middle ear. I did pick up boxing a couple of years ago, and got punched on my jaw a bunch of times. Maybe that set things off the wrong way, I have no idea. I’ve also had Invisalign braces for a couple of years, right until the symptoms started happening. Could be something.

Also, I was in a long, bad breakup during the whole time all these new problems started. Also COVID-19 happened, and I worked in a test facility with a whole lot of overstimulation for over a year. Maybe this whole thing is an underlying mental issue, that has manifested itself physically. But I feel SO much better than then, mentally. I have a great new relationship and count my blessings. But I’m definitely going to explore the psychological route more now since the physical route has hardly given me results.

Anyway, after researching everything for so long, and actually having had procedures done now, I am 95% sure that it's Tensor Tympani Syndrome. My symptoms seem to correspond more with that, then with MEM, where the stapedius muscle seems to be the troubled one.

Sorry, this is becoming quite a long story! It has been a very long road. Just wanted to share all of this with some people that have similar problems. This is the first thing I’m posting on a forum. These are the things that I have left to try:

First, the dentist. Let's see what comes out of that. They use a T-scan and the dentist does make a lot of sense. Again, it’s overstimulation of the jaw and chewing muscles, that could cause problems in my middle ear.

Second, I'm going to have a talk with a neurology department called Brai3n, in Belgium. They list TTS as a condition they're familiar with, and use brain stimulation to help people with their problems. I mean, why not. It might definitely be my overstimulated millennial brain that started the problems. Their theory is, my anxious response to getting tinnitus in the first place, has manifested itself over the years after that, and my middle ear muscle(s) have been overcompensating completely. And the anxiousness from my past is now rooted in the muscles and the startle reflexes. Through brain stimulation, they could ‘reset’ the patterns that are causing these problems. It actually makes a lot of sense to me, since the doctors can’t find anything physically wrong with me. The website is in Dutch.

Brai3n: Tensor Tympani Syndrome (TTS)

I’m on a waiting list and meeting with them somewhere end of this summer.

My other option is going into a full-blown psychology route. So trying everything in a personalised treatment, be it EMDR, neurology, you name it. There’s a place in Holland I’m going to email. Maybe there’s just a mental pattern that needs to be broken.

I have two options left to try in the ENT department:

1) Botulinum Toxin (Botox) injections in the muscles. If my muscle could only relax, that should fix the problems right? Some websites/researches say that this is a executable procedure. Like, what to think of this:

Intratympanic Botulinum Toxin Injection as a New Therapeutic Modality for Middle Ear Myoclonic Tinnitus

Botox to treat middle ear myoclonus (MEM) syndrome

Looks pretty good. And it just makes sense to me. Also, a Botox soaked tiny sponge can also be used, that rests against the muscles. The strange thing is, I also read things online that it absolutely can't be done, because the muscles are too small. There seems to be different opinions on the matter. Show me the office door of an ENT willing to try this on me, and I'll come running! There's no one in Holland that does this (at least I can't find any), but there might be in Germany. I emailed some doctors in the US and South-Africa, trying to find out if they can help or know anyone who might. If not, I'm going to send out a email clusterbomb to ENT's in Germany and hope there's someone willing to try this out. Or does anyone know somebody who I can visit? It is useful to add that this is only a temporary solution. So this is probably last on my list of things to try, and the next part:

2) Cutting the stapedius and tensor tympani muscles.

This article says the woman tried the Botox on someone, 'after cutting the muscles didn't help'. This procedure just really scares me to be honst. I would really love to hear from someone that has had these muscles cut. A few of my ENT doctors warned me that it would only lead to more problems and overstimulation of the ears. But other research online states that it's a relatively safe procedure. Those are two opposites! What to believe?

Treatment of objective tinnitus with transpalatal Botox® injection in a pediatric patient with middle ear myoclonus: A case report

I mean, if the muscles are only causing me problems, why not cut them. I'm willing to take the risk by now, I think. I'm pretty desperate to get rid of these problems and start living my life again. Everything feels on hold, I'm at a point that I'm putting aside future plans, it's such a struggle to deal with every day.

So these are my current routes, looking for a permanent solution. I wonder if anyone has any wisdom to share, or maybe have different ideas. I think it's time for me to start talking to other people that have the same issues, because the ENTs just don't understand me at all and can't even seem to diagnose me properly. Again, apologies for the long story. Have a great weekend!

 

I have TTTS in my original tinnitus ear from acoustic shock. It flares to be super sensitive at times, then recedes at others, but it is always there. No constant fluttering, only in response to sudden sounds (sometimes not even loud), as well as touching my face around the ear and when it's bad, from my own voice at the end of every sentence. It's said to be an overreaction of the muscles.

I did a lot of research myself and the only real "cure" is the surgery. Biggest risk of surgery is tinnitus and hyperacusis. Not an easy trade for me but it depends on your situation. Some people get varying degrees of success with muscle relaxers. Some people improve with time - I'm talking years. It's not that common for it to go away completely though. I see people on here talk about it going away in some months but I think that's more from a fresh injury. It's said to get worse with anxiety and stress.

Some people seem to get it from overprotecting with hyperacusis - this is the type most likely to fade completely in my opinion. Also, when I had an ear infection/fluid in my non-TTTS ear, I had some symptoms. So if caused by an infection, I think there is a good chance for healing.

I'm going to an ENT next week and am going to ask for muscle relaxers. Otherwise I'm just exploring the mind/body connection and trying to CBT myself to limit the startle reflex. Constantly telling myself that the sounds aren't hurting me. Myriam Westcott is one of the experts on TTTS and has stated that there is no evidence that TTTS is causing any damage to your hearing or ears. The Norena paper is also a good resource - kind of like the holy grail for what they know about it.

 

Curious to know whether you have started a muscle relaxant yet, & if so, how it's going? I've been thinking of trialing one myself.

On another note, I wonder whether Westcott's belief that TTTS does no damage to the ears might not be a bit outdated considering the Norena model?

 

I have not yet. The ENT gave me Methylprednisolone, which I have yet to take. I have heard that one should see a neurotologist for TTTS and they are more likely to prescribe the muscle relaxers. I definitely want to try them still.

I reread the Norena paper and from what I understood, the actual injury should heal or semi-heal itself. I didn't see any indication that TTTS spasms cause more damage necessarily unless another acoustic injury occurs. It's just that the inflammatory cycle is hard to stop. I've read that the ear has an annoying way of self-perpetuating the inflammatory loop and since it's almost cut off from the rest of the body's circulatory system, it's hard to get drugs/targets to get in there to stop it.

Interestingly, Norena also seemed to agree with Westcott's theories that the parasympathetic nervous system/anxiety can make TTTS worse or prolong it.

I fit the Norena model perfectly - from the TTTS, fullness, tinnitus, and nasal congestion and eustachian tube issues. I don't have pain too often, however.

He also mentioned that TTTS-influenced tinnitus probably has origins in the DCN, so that's a good indicator that Dr. Shore's device may help alleviate that. I wonder if it would help with the TTTS itself.

 

Ugh, so frustrating that the ENT couldn't just help you out! Are you thinking of trying the steroid? Honestly, after going back just now & re-reading parts of the Norena article, I might be tempted to! Though I know there's a whole host of negative side effects associated with it.

I too went back & re-read parts of the Norena article (bottom of pg. 4 up until the section titled, "Referred Pain") & there's mention of the potential for further muscle injury due to the contraction as well as a description of other negative consequences of the inflammation process (including hearing loss). Really hard to read, but maybe also gives us hope in that stopping/minimizing the contraction of this muscle & the resulting inflammation is the way forward?

 

According to his model, there seems to be a myriad of problems keeping the muscle inflamed. I'm very positive that Botox may be a potential cure, if administered early enough before the inner ear gets involved. I'm almost tempted to just get the muscle cut, I'm so worried about making the tinnitus and hyperacusis worse with Botox.

 

Yeah, I was thinking the same thing re: Botox. Then at least the muscle could rest fully for a while. Though I do wonder whether the Botox might not otherwise negatively impact the healing?

Yeah, I'd worry about making things worse too. And I have a hunch it would be challenging to find someone to perform this procedure anyway, since it's not commonly done.

As for the cutting the muscle, I'd personally be terrified to do that, since the Tensor Tympani is involved in protecting the ear from loud sound. But that's just me!

 

So I believe that the Tensor Tympani muscle doesn't react to unexpected loud noise fast enough to protect the ear.

This is what user @addot had to say about Botox as a potential solution in the thread discussing Noreña's 2022 follow up paper:

If this is the case, then maybe it wouldn't matter that the TTM isn't protecting against sounds since the real damage is done by the inflammation; all that matters is stopping the hyperactive TTM from triggering this process. So I think you're right on the money.

I'm still curious about the potential long term benefits of this procedure. It seems great for setback prevention, and perhaps for setback recovery if administered early enough. But can it lead to sustained improvement?

 

Ahh, I'm in the opposite situation. First of all, I didn't have any trauma or infection, I believe my tinnitus and TTTS is idiopathic/inherited most probably. I've been having the usual TTTS reacting to short, clicky sounds, kitchenware, some vowels, scratching my face, ending a sentence etc in relative quietness for around 2 years now (started a bit after my tinnitus). It stops when I'm at louder places with more noise. Fun fact is I almost got used to it and it no longer annoyed me so much. I believe you can achieve habituation to this one quite easily because you kind of expect the spasms to happen.

But the last few months, I gradually started having this other form you mentioned at the beginning of the post. My right ear starts thumping/spasming every 5/10/15/30 seconds independently of sounds, after a random hiccup, internal burp or similar motions. At first, it was happening for about 1 hour, but nowadays it happens way more - for example, today it was on for like 6 hours. It doesn't happen every day though. When I plug the ear, the thumping stops for the duration.

It's really disturbing and I've already tried taking Magnesium (Citrate and Chelate, don't know about others forms) for a month at least. I also don't know why I wrote this on this post, probably to get any notifications from you guys who deal with the same thing.

It seems muscle relaxers and surgery are the only options, or if we're lucky it stops after some time. I really don't want to risk my healthy hearing or a tinnitus worsening for this. Maybe the Susan Shore's device comes and helps this issue as well.