"Diagnosed" with TTTS. Among other things.

Hi,

My name is Ben, I'm from Melbourne, Australia, and I have been told I have TTTS (Tonic Tensor Tympani Syndrome) by Myriom Westcott. I apologize in advance for the long post, but I want to include as much as I can remember.

I'm 26, my home is quiet, I work in retail, so music is constantly going, people constantly talking. I listen my music in my car, not loud though. Can still hold a conversation no problem (in all three environments). I hadn't been to a club since I was 18, last concert I went to was about 6 years ago. I also have Psoriasis on my legs, I have what I've started calling pseudo-asthma. I've had every test known to Western medicine, and according that that and numerous specialists, I don't have clinical asthma. I live off a Ventolin though, and my brother also gets it. Story for another day though. My biggest struggle I guess is WHY. I'm not religious, but if there is someone up there, I believe he/she is punishing me for something. I don't smoke, drink, do drugs, party all night, still young, I go to the gym, try and eat right.

12 Months Ago

Woke up one day with fluttering in my right ear, kind of like someone beating on a drop extremely fast for 10-20 seconds. It eventually moved onto my left ear as well. No sign of Tinnitus. Tried all the usual things, popping ears, swallowing, yawning. Nothing stopped it. Seemed random when it happened. I eventually worked out, I could sometimes trigger it through forced exertion.

Another symptom was pressure in my ears, that no matter how hard I tried, I couldn't equalize. My Eustachian tubes click like its going out fashion, can force them to click my moving my head up and down. By this time, lets say two weeks after the fluttering started, the fluttering had died down a little. Didn't happen as often, but it did. I eventually got used to it and would forget about. This was until one day, it stopped entirely and was replaced with faint ringing in both ears. Got home, and got straight into Google (not always I good idea, I know.)

Using Google and reading about similar things people had, I had a rough idea of what it could be. Booked an appointment with my GP, just to get a referral for an ENT because from reading everyone's posts, I knew it something she could't help with. Got the referral to see Dr Vincent Cousins (one of Melbourne's leading ear guys.) Had CT scans, multiple hearing tests, tests which measure the tympani and stapedial bones, contrast MRI, all came back clean. Pathologically speaking, everything was in working order. ENT basically said what I had worked out for myself, and that there wasn't much that could be done. I asked him about TTTS and he brushed it off as hocus pocus. Right, onto someone else. Myriom Westcott.

2 Weeks Ago

By now my Tinnitus had worsened, and I had also developed Hyperacusis. Mainly high frequency impact noises (dishes clanging, metal on metal etc.) The fluttering I experience maybe once a month, the pressure comes and goes. To date, I have a total of 4 sounds in my head/ears. I have two hums, one about 100Hz, another about 300-400Hz. Both coming from different sides. I have a hiss in my right ear that I can hear over almost anything. I have a hiss in my left ear that seems to come and go, but its most prominent when I'm watching TV of a night. When there is absolutely no sound stimuli present, my ears kind of roar, and semi drown out the other sounds. I also get the occasional high pitched ring that might last 10-20 seconds, which apparently is ear wax moving or something.

I found Myriom through Google, after finding a paper she had written and presented at a conference regarding TTTS. After describing all my symptoms, and being bombarded with 100 questions about what/when/where etc, she came to the conclusion I have TTTS. Which I suspected all along. As you all most likely know, there is no magic pill, and Tinnitus is a problem in the brain, not so much the ears. She explained how it works, and how most people will get into a self destructive cycle that will make everything worse. The hyperacusis is a result of your brain thinking there is something wrong with your ears, which is a result of you thinking that, and worrying about it constantly. So your brain tries to constantly protect your ears, by engaging the tympani/stapedial muscles too much. I basically have to train my brain, and make it understand these sounds aren't damaging. Much easier said than done.

Treatment

Whenever I'm in a quiet environment, or one where I can control the noise, I have to have headphones around my neck, with some sort of noise playing. Volume should be audible, but not enough for other people to notice, unless they stand right next to you. It can't be music or something engaging, has to be something you can listen to for hours, something like rain falling, train tracks, hail storm etc. Whenever I encounter the noises that are deemed harmful and induce a response from my ears, I have to focus on the noise coming out of the headphones. I also have to understand that the Tinnitus isn't harmful, and that even though the noises cause my ears to react, they aren't causing damage.

TMJ/D

I also have TMD on the right side of jaw. Sometimes he pain occurs in the left side. I've had it for years, easily 10-15 years. I can click my right jaw, can't chew steaks that are over cooked, or nut bars for too long, starts to get fatigued and sore. I have a splint/mouth guard that I wear at night, and will be seeing a muscular/skeletal physio to hopefully correct that problem. This was set in motion by Dr Michael Hase, a maxillofacial surgeon in Melbourne. Dr Westcott, believes that the TMJ/D may have set off the TTTS in the first place.

Supplements

I've tried all the usual supplements, ginkgo etc. May work for some people, but did nothing for me. Only supplement I take now is a multi-vitamin, magnesium, zinc, fish oil. Honestly don't know if it helps, but I'll try anything. I'm also going to try GABA supplements, Picamilon in particular.

Pink/White Noise Therapy

I asked Dr Westcott about these noises, and she said don't bother. In fact, it can be harmful to people with certain types. She also said don't spend thousands on noise generators/maskers. The only reason they exist today is because they come from a time when we didn't have smartphones, and iPod's and so on. She said there is no magic noise. Personally, I'm using rain storm noises. It's only been a week since I properly started, so it is too soon to tell.

Sleep

I used to sleep with a fan going, if my Tinnitus is perceptively louder, then I will use it. Otherwise, I have started using the White Noise app on my phone, and set it to Extreme Rain and put under my pillow, lowish volume, speaker facing up.

Future

The TRT takes time, a long time. A topic that pops up a lot, is if I have anxiety, which might explain all these phantom conditions I have. It's been suggested I see a psychologist, which is fine, I've always suspected some sort of limbic issue going on. I mean, I prefer having my hair short, becuase if it is too long, I'll twist it. To the point I have to cut the knot I've made off. No idea why. I'm going to a GP to try and get something like Zoloft/Effexor etc and see if that does anything. I am aware that those medicines are usually best combined with therapy, unfortunately I'm not made of money and this might take a little longer than I'd like.

I think that is everything, if you have any questions/suggestions, by all means. Thanks for reading! (If you did.)

P.S. I forgot about the time I went skydiving, and my ears constantly popped all the way up, on the way down when I landed, my Tinnitus had never been so loud. It subsided back to normal volume a little while after. Don't know if it was the rapid pressure change, or the wind roaring on the way down. It has been suggested I don't do it again. Good experience though (the skydiving).

 

Welcome to the forums buddy!

It's nice, and also sad at the same time, to see someone else from Melbourne on here, there's a few of us now I think.

I have multi-tonal tinnitus, hyperacusis with TTTS symptoms. Also have TMJD.

How was your experience with Myriam Westcott? Are you doing any sort of continual treatment with her, or just the one consultation?

I've been to the same clinic before, but saw Ross Dineen instead because I was only dealing with tinnitus (and minor TTTS) symptoms at the time. I was thinking about going to see Myriam Westcott now but I'm not sure how much more she'd be able to tell me that I haven't already figured out (mainly thanks to this forum) for myself at this point, plus they are a bit on the pricey side. I'd be curious to hear how your experience with her went.

Ross Dineen was probably one of the best doctor-types I've ever had to deal with though, definitely. The guy is very genuine and spent a great deal of time with me evaluating my symptoms, answering my queries and listening to my ideas about tinnitus. At the time it was a very valuable experience for me and I got a lot out of the appointment I had with him. However, this was at a time where the only problem I had was mainly multi-tonal tinnitus. Since then I accidentally did a valsalva manueva too hard and developed hyperacusis, and more significant TTTS symptoms.

I've also been to see Vincent Cousins, he was decent enough but I had a very similar experience to you. I went to see him after developing hyperacusis and TTTS, did the same tests (no CT scan though) but he didn't think too much of it at all so that didn't really end up going anywhere.

 

Thanks!

Myriom is nice, understanding, didn't treat you like, don't be ridiculous, that's a dumb idea. Personally, I left the session 50/50. It was great because she explained the whole thing, how the ear/brain communicate, why it happened, the vicious loop etc. Other than that, the treatment she could've faxed/emailed to me. She did say however, she's happy to answer any questions, got her email address, if I get really stuck. It was $300 for an ear pathology lesson and some paperwork. One consultation. Glad I did it though, it armed me with more information.