TTTS Pain/Noxacusis from Tympanometry

[Ngo13]

Hi all, I've hesitated posting as I have been trying to avoid catastrophizing but I'm a bit at a loss. For background, I had an acoustic shock in Jan 2022 that resulted in tinnitus in my left ear, now bilateral with my right ear joining in a few months later. Both my ears have felt full and blocked since onset. No hearing loss or anything of note from the tests. I have TTTS in my left ear since sometime last year (not sure when it started, maybe from the beginning). My tinnitus has been slowly getting worse since about April. It's around this time I noticed my TTTS getting more reactive and my right ear having some (less reactive) TTTS too. No pain, just spasms to some sounds, including my own voice and touching my face.

About a month ago I went to an audiologist and got tympanometry done. My ears instantly felt more full, but settled down a bit later. Two days later burning pain started in my left ear. It was constant but became worse when swallowing, when TTTS thumping occurred, and when talking and moving my neck. In desperation I went to an ENT who performed a tympanometry again (I hadn't made the connection yet) and my ears felt really full that night. Pain exploded the next day, with my right ear joining in as well with stabbing, sharp pains. My left is still the only one that burns. I felt like my ears were just open wounds. I then went to a neurologist who diagnosed me with trigeminal neuralgia and denied any correlation with my ears. I went to urgent care a few days later where the doctor said my eardrums were bulging, no infection, and to take Sudafed. Miraculously, after about another five days my pain stopped, even when having TTTS spasms. I found it was much more difficult to equalize my ears when driving, however. I was just thankful to not be in pain. That lasted a week and I thought I was on the other side.

This week I was drinking long gulps from my water bottle, which made my ears thump a lot. A few hours later the burning and sharp pain came back. I was devastated. I went to an ENT who said everything looked fine and told me to take a freaking Xanax. He did order a CT though (since I refused MRI). The next day it was lingering but much better, but then I was crying and blew my nose. That aggravated my symptoms. Fast forward a few days and it's not completely gone but I had hope it was getting better again. The burning was gone and I was just left with the sharp pains, but less intense. This is how it went away last time. But I made the mistake of blowing my nose (gently) again (!) not even thinking. Pain started up again and it's been another 4 days now with pain that varies in intensity. Yesterday, no burning pain. Today, lots of burning pain and sharp pains.

I should note that I can't make any connection with the pain and sound. My TTTS is triggered by some sound, which intensifies the pain, but sounds in the absence of TTTS thumping aren't a problem. The pain gets the most intense after I swallow or talk.

I know there is trigeminal nerve involvement for sure, but I honestly don't know who to manage this.

Like is it noxacusis, is it barotrauma? It seems like when my eardrum is stretched (?) it causes the pain.

I have a Medrol pack, should I take it? I also got prescribed Carbamazepine but didn't start it yet.

I just don't know what to do and I'm afraid of making it worse. I don't want this to be permanent. I was finally trying to move on from my stupid tinnitus/TTTS even though it was sooo hard. And then this happens. I don't understand what is happening to me. I'm convinced the root cause is my TTTS but I don't know what I can do about it. I just want to move on with my freaking life and not be thinking about my stupid broken ears every damn day. With my tinnitus and TTTS (no pain), I was going to try, but with this pain I feel like I'm at a dead end.

Does anyone have any advice? Does anyone have ear pain that is triggered mostly by movement and not only sound?

 

[Olly132]

I'm no expert, but I suffer with noxacusis and doing my own research into potential treatments.

It certainly sounds like some sort of middle ear disorder and maybe Eustachian tube dysfunction. It doesn't ound like noxacusis. At least not yet.

I'm currently trying to find an ENT who will inject Botox into my tensor veli palatini muscle. Which may help if you have TTTS and you may have more luck with finding someone who can do that than me. If that is successful and wears off, my long-term view is to look to have tensor tympani tenotomy. Do your own research on it and see where it takes you.

I fully believe this will help me, but of course nothing is guaranteed in this life.

As short-term relief, have you tried boiling a pan of water, putting in some drops of olbas oil, then with a towel over your head breathe in the steam? It's no miracle cure but it certainly alleviates my symptoms of fullness for a little while.

 

[haha ear go eeee]

I'm currently trying to find an ENT who will inject Botox into my tensor veli palatini muscle.

I'm looking as well. I'll let you know if I find any. I'm trying to go through Fournier and get him to send a referral for me, maybe that's an option for you too? Both him and Noreña should be able to.

 

[Olly132]

I'm looking as well. I'll let you know if I find any. I'm trying to go through Fournier and get him to send a referral for me, maybe that's an option for you too? Both him and Noreña should be able to.

Thank you. Yes, keep me updated. Good idea with getting the referral. I'm just going through the list of top ENTs in my country and emailing them until I find someone who is at least prepared to entertain the idea. Responses so far have been disheartening but I will persevere.

 

[Brian Newman]

Hi all, I've hesitated posting as I have been trying to avoid catastrophizing but I'm a bit at a loss. For background, I had an acoustic shock in Jan 2022 that resulted in tinnitus in my left ear, now bilateral with my right ear joining in a few months later. Both my ears have felt full and blocked since onset. No hearing loss or anything of note from the tests. I have TTTS in my left ear since sometime last year (not sure when it started, maybe from the beginning). My tinnitus has been slowly getting worse since about April. It's around this time I noticed my TTTS getting more reactive and my right ear having some (less reactive) TTTS too. No pain, just spasms to some sounds, including my own voice and touching my face.

About a month ago I went to an audiologist and got tympanometry done. My ears instantly felt more full, but settled down a bit later. Two days later burning pain started in my left ear. It was constant but became worse when swallowing, when TTTS thumping occurred, and when talking and moving my neck. In desperation I went to an ENT who performed a tympanometry again (I hadn't made the connection yet) and my ears felt really full that night. Pain exploded the next day, with my right ear joining in as well with stabbing, sharp pains. My left is still the only one that burns. I felt like my ears were just open wounds. I then went to a neurologist who diagnosed me with trigeminal neuralgia and denied any correlation with my ears. I went to urgent care a few days later where the doctor said my eardrums were bulging, no infection, and to take Sudafed. Miraculously, after about another five days my pain stopped, even when having TTTS spasms. I found it was much more difficult to equalize my ears when driving, however. I was just thankful to not be in pain. That lasted a week and I thought I was on the other side.

This week I was drinking long gulps from my water bottle, which made my ears thump a lot. A few hours later the burning and sharp pain came back. I was devastated. I went to an ENT who said everything looked fine and told me to take a freaking Xanax. He did order a CT though (since I refused MRI). The next day it was lingering but much better, but then I was crying and blew my nose. That aggravated my symptoms. Fast forward a few days and it's not completely gone but I had hope it was getting better again. The burning was gone and I was just left with the sharp pains, but less intense. This is how it went away last time. But I made the mistake of blowing my nose (gently) again (!) not even thinking. Pain started up again and it's been another 4 days now with pain that varies in intensity. Yesterday, no burning pain. Today, lots of burning pain and sharp pains.

I should note that I can't make any connection with the pain and sound. My TTTS is triggered by some sound, which intensifies the pain, but sounds in the absence of TTTS thumping aren't a problem. The pain gets the most intense after I swallow or talk.

I know there is trigeminal nerve involvement for sure, but I honestly don't know who to manage this.

Like is it noxacusis, is it barotrauma? It seems like when my eardrum is stretched (?) it causes the pain.

I have a Medrol pack, should I take it? I also got prescribed Carbamazepine but didn't start it yet.

I just don't know what to do and I'm afraid of making it worse. I don't want this to be permanent. I was finally trying to move on from my stupid tinnitus/TTTS even though it was sooo hard. And then this happens. I don't understand what is happening to me. I'm convinced the root cause is my TTTS but I don't know what I can do about it. I just want to move on with my freaking life and not be thinking about my stupid broken ears every damn day. With my tinnitus and TTTS (no pain), I was going to try, but with this pain I feel like I'm at a dead end.

Does anyone have any advice? Does anyone have ear pain that is triggered mostly by movement and not only sound?

You are a new case. Rest your ears, get silence and don't take meds. Whatever you do, just don't do TRT, lol.

Things will most definitely calm down but you do need to be patient.

Wish I had done this earlier but I kept making my noxacusis worse.

Sorry, that's a crappy way to get noxacusis. Remember, doctors cannot help you and will usually only make things worse unless they're botoxing the Tensor tympani or telling you to try a nerve block. Silence can't hurt you.