TTTS Symptoms

[Aklara319]

Hi everyone,

I have posted elsewhere on the forum, but am looking for advice regarding the ear pain I have been experiencing for five months. A brief overview of my story: at the end of August, I flew home and suffered ear pressure equalization issues while landing. I had difficulty hearing for a few days, but this cleared up.

About two weeks later, I developed intermitted thumping in my left ear. No pain. This too cleared up around mid-September. I didn't really think twice about it.

Then at the end of September, I went to a nightclub. I'm not a big club-goer and maybe attend noisy venues three times per year. I left with mild tinnitus that I have had since. My extended audiogram was all -5 to +5 up to 15,000, with some minor loss in my left ear at 16k (yes, I am aware that audiograms are not definitive). No speech in noise issues. My tinnitus tone is around 4k.

Back to my symptoms: About two days later, I developed my most bothersome problems. My ear flutters when I speak and in response to certain percussive sounds. I also have constant pain in my ear that radiates through my jaw, the side of my head, and upper neck. The ear also feels tense and full. This is my worse tinnitus ear--I also have a low droning sound in that ear.

I don't think that the pain is responsive to noise and never noticed typical hyperacusis symptoms. It seems to worsen when I talk, eat, or touch the affected area. My doctor suspected a TMJ issue, but I never had jaw pain prior to this incident, nor do I have any functional issues. The chronology has left me frustrated--my fluttering was not initially triggered by noise, while the TTTS literature I've read attribute it to noise or to TMJ disorders.

I want to cast a wider net and see if anyone else has recovered from this? If so, what did you do?

What I've done: physical therapy for pain management, some massage therapy, CBT, and have worn a mouth guard for three months. I have also tried magnesium supplements and Flexeril. A CT scan of my neck was normal. Let me know what helps!

Best,
Aklara319

 

[Bill Bauer]

I want to cast a wider net and see if anyone else has recovered from this? If so, what did you do?

The fluttering in response to noises (in my case, it was the sound of my own voice) normally goes away on its own, but it can take 12-18 months for it to gradually fade.

I believe @Lex has had ear pain, that if I remember correctly had diminished over time too.

 

[Contrast]

(yes, I am aware that audiograms are not definitive

yes, but research is saying audiograms are dead wrong, not just slightly inaccurate.

 

[Aklara319]

Just to add: my left side has pretty much all of the symptoms. My right ear might have tinnitus as well, but it's so low it's impossible to tell. I rarely get fluttering/jaw pain on that side.

 

[Lilah]

Is TTTS associated with a certain type of tinnitus or health condition? Not sure whether whether I have TTTS or not, sometimes I get rumbling/vibrations with noise and sometimes without noise.

 

[Juan]

Hi everyone,

I have posted elsewhere on the forum, but am looking for advice regarding the ear pain I have been experiencing for five months. A brief overview of my story: at the end of August, I flew home and suffered ear pressure equalization issues while landing. I had difficulty hearing for a few days, but this cleared up.

About two weeks later, I developed intermitted thumping in my left ear. No pain. This too cleared up around mid-September. I didn't really think twice about it.

Then at the end of September, I went to a nightclub. I'm not a big club-goer and maybe attend noisy venues three times per year. I left with mild tinnitus that I have had since. My extended audiogram was all -5 to +5 up to 15,000, with some minor loss in my left ear at 16k (yes, I am aware that audiograms are not definitive). No speech in noise issues. My tinnitus tone is around 4k.

Back to my symptoms: About two days later, I developed my most bothersome problems. My ear flutters when I speak and in response to certain percussive sounds. I also have constant pain in my ear that radiates through my jaw, the side of my head, and upper neck. The ear also feels tense and full. This is my worse tinnitus ear--I also have a low droning sound in that ear.

I don't think that the pain is responsive to noise and never noticed typical hyperacusis symptoms. It seems to worsen when I talk, eat, or touch the affected area. My doctor suspected a TMJ issue, but I never had jaw pain prior to this incident, nor do I have any functional issues. The chronology has left me frustrated--my fluttering was not initially triggered by noise, while the TTTS literature I've read attribute it to noise or to TMJ disorders.

I want to cast a wider net and see if anyone else has recovered from this? If so, what did you do?

What I've done: physical therapy for pain management, some massage therapy, CBT, and have worn a mouth guard for three months. I have also tried magnesium supplements and Flexeril. A CT scan of my neck was normal. Let me know what helps!

Best,
Aklara319

My feeling is that all the symptoms after the nightclub episode are just a "warning sign" your hearing is giving you, and they will all clear by themselves, but it may take a long time.

If I were you, I would stay away from very loud amplified sound, and specially nightclubs and concerts, for the rest of my life. I have read similar stories to yours a couple of time and a guy very accurately describe what causes hearing damage like baseball strikes, you know.. the nightclub, this was just strike 1, so do not risk it more. As I said, this is a "warning sign", so the next time your hearing may take the hits from sound really really bad.

There is not a treatment for this sort of hearing problems today, so just use common sense, rest, protect your ears when needed, have a healthy diet, exercise a bit.. good luck!

 

[Aklara319]

Hi all,

I'd be very grateful for your thoughts. It's been nearly a year since I went to the club that gave me a barrage of ear problems. Before I went to the club, I'd already developed fluttering (when I yawned or belched) after flying while sick. But the loud music caused high-pitched tinnitus, a low droning sound, and a very physical kind of ear pain. I have no hyperacusis symptoms but get stuffy, crackly, painful ears when I talk a lot or chew. Left ear flutters when I talk, after sudden percussive sounds, or if I touch my cheek. My masseter muscles and neck (just below the ear) often ache if I touch them.

What I've done:
-MRI and CBCT of the TMJ. Both normal and examined by an oral surgeon. Tried a nightguard, physiotherapy, massage and trigger point injections.
-Ultrasound and CT of neck and MRI of cervical spine. Normal.
-Seen a few ENTs who cleared me of visible ear/nasopharyngeal problems.
-No hearing loss detected on a high frequency hearing test.
-I saw a psychologist for 6 months. Learned CBT strategies. He did not diagnose me with an anxiety disorder and believed my symptoms to be medical.

Where things stand now:
-I have an anterior open bite. Seems unrelated, but who knows?
-An excellent neurotologist was able to record my middle ear muscle spasming. He placed a microphone used for acoustic reflex testing in my ear and banged a metal rod against a lamp. Spasmed audibly each time. We tested it against my "better" ear, which did not respond to the sound, and to my normal acoustic reflex test result. He suspects a dysfunction of my middle ear muscles (specifically, the stapedial) and gave me the option of surgery to sever the tendons. Could not definitively say how this happened (people fly sick and go to clubs all the time) and confirmed that it is very rare. I opted to wait for now.

What should I do from here? I want to make sure that there's nothing else causing the muscle spasms. The only things that worsen it are certain head positions, talking, and, oddly enough, my (unrelated) wisdom teeth extractions.

 

[TnH]

Yeah... no... don't opt to sever the tendons. Big risk and no guarantee it gets better.