Do I Have TTTS — Does This Sound Like Tonic Tensor Tympani Syndrome to You?

Hi all!

I'm a 28-year old woman looking for advice because my doctor's don't really try to help me (which is the case for a lot of people on here, I'm afraid).

I started noticing my tinnitus last summer. I had a super stressful time in my life as I was suffering with severe panic attacks almost daily and that sent my whole body in a state of chronic stress... I was a mess basically. I think that whole issue might have been caused by hormonal changes: My IUD was removed in October (as it was supposed to, never had any psychological problems while being on it) and I think my body was struggling with producing its own hormones but I don't have any proof for that! I started going to therapy and now, my anxiety is ok on most days luckily, although my therapist says that I'm still left with a somatic depression that does sometimes affect my anxiety levels. Depends on the day, my stress levels, PMS and so on, ugh. It's intertwined.

After noticing the tinnitus for the first time, it didn't bother me much until late November when it really started to become more noticeable. Basically, a lot of things point to me suffering with TTTS but it's mostly a conclusion I made myself through reading stuff on forums like this one where wonderful people tell their stories to help others since my doctor's aren't very helpful as I said.

I'd describe my tinnitus as a constant, low rumble. Usually, it's very fast; it almost sounds like traffic sounds from a nearby street that you'd hear from somewhere inside your house. It does sometimes coincide with my pulse, which scares me, but overall, I'm sure it's much faster than that. Still, I'm scared that I can't trust my perception. Also, I've had a few occasions where the sound was unbearably loud and then, always constant! So, when the tinnitus is not really flaring up, it sounds like constant, fast thudding but when it does flare up, it's a constant, vibrating sound, even louder than, let's say, a video on YouTube that was playing on normal volume during the flare up.

I also experience hyperacusis. Sometimes, noises seem intrusive and I can literally feel my ear plop with loud sounds such as banging/talking. To give you an example: Sometimes, when someone's talking close to me, my ear will plop until the noise of their voice stops. Basically, a person talks and my ear will go "plop, plop, plop" with their voice until they stop speaking. The plopping will stop during that silence but immediately start with them talking again. So I do physically feel the muscles in my ear contract, which I never used to experience. Mind you, it's not like anyone's shouting at me, they are talking to me in a normal volume!

Also, when I listen to external sounds such as someone speaking on the TV or even my own voice, I stop hearing the tinnitus until that noise is gone. That's when it starts with almost a thud and boom, it's there. So I don't know if it's just being masked although it's constantly there or whether there's another explanation for that.

I also don't notice the tinnitus whenever I'm outside. I could take a walk in the forest and not hear one thud but as soon as I'm back inside, it's there.

But the thumping part is what's scaring me. I've read that this can be caused by a muscle contracting in the ear but for me, it's usually a fast, constant rumble like a staccato so can it really be that?

Thyroid issues + high blood pressure are ruled out. I'll have an MRI done in two weeks, which is a relief. But how can I make sure that I'm suffering from TTTS? It's linked to anxiety and it does align with that other people are saying but how can I be sure? Can I ask the doctor for a specific examination? I read somewhere that a tympanogram might help to detect muscle spasms.

Anyway, thank you for listening. This is causing me so much worry and talking to others who experience the same might really help.

- Tamsin

 

Hi tamsin, what you are experiencing sounds similar to me, I have a rumbling noise in my right ear, had it since Feb 19, I've had normal tinnitus since Nov 18 from acoustic trauma. The rumbling is definitely pulsatile but it is affected by noise, people speaking, my voice, various other noises but they have to be a certain volume then it resumes immediately. It is also affected by movement, shaking my head stops it momentarily. It went away towards the end of last year but has started again after a hearing test 2 weeks ago and is now constant. I'm sure it's related to hyperacusis in some way? I also get the ear popping but not as frequently now, high pitch sounds seem to do this. Sorry I can't offer you any advice, but mine definitely improved over the course of last year so I'm hoping it will again and I won't be having another hearing test in a hurry. Take care.

 

Thank you so much for your reply! It's such a weird sensation. Yesterday, I had a panic attack and my T seemed to be pulsatile afterwards as well. I guess I'll just wait for the results of the MRI. This is the next step. Thank you so much for answering!! Take care as well. I hope yours gets better, too.

 

Thanks Tamsin, I really hope you can get some answers.
Please let us know how you get on. Wishing you the best of luck.

 

I have all of these sounds. From a medical journal website, they may be caused by either a hypertension moment or hypertension crisis, pulmonary arterial hypertension and or A Fib. My blood pressure is normal 99.9% of the time, but a quick, sudden and brief change in blood pressure (anxiety - stress) that happened a few times is my cause.

Every word that you discuss - including hyperacusis - I experience and for me it has association to the heart and abdominal aortic. From this - veins and arteries also get involved with pulse. For me, being outside and receiving fresh oxygen, some sounds will lesson. For me staying calm is important. New drugs for these conditions will be available soon. Ultrasounds of the abdominal aortic, neck veins and arteries are given, along with a ECHO. My MRI showed microvascular ischemic changes and the radiologist discussed my sounds. With you being young, it's very doubtful that your MRI will note any changes.