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!
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