Somatic White Noise Tinnitus? I'm Enrolling in a Clinical Trial

[Robin R]

Hello everyone.

26M here from Belgium.

I've been reading some stories on Tinnitus Talk for quite some time which helped me cope and thought I'd share my story.

Approximately two months ago I woke up with a white noise type of sound that still has not gone away, but it sometimes fluctuates in loudness. I can hear it over the TV, while working, even in the car. At times it gets quite intrusive with sharp edges. I'm only two months in but the thought that it will stay with me forever makes me very anxious.

I can monitor it by clenching my teeth together which alleviates it, then going back to a certain volume. The volume/pitch also seems to change somehow during the day. I can modify it a lot by pressing my skull at almost every point, moving my jaw, twitching my neck, clenching teeth, etc.

I have for as long as I can remember worn hearing protection while going out, never experienced any ear fullness, loss of hearing, vertigo, hyperacusis or whatsoever. I had hearing tests done, all fine. During my first ENT appointment they put me on Methylprednisolone for 10 days, after day 5-6 my symptoms cleared but after stopping the treatment it came back (something inflammation related?).

I do have experienced ringing before after loud noise exposure but I feel like that's a different tone than the noise I hear now. In the past I experienced this noise as well (probably stress related during studies) but it remained for a week max.

I have an office job and my posture is probably not great, but I do not experience any jaw pain. Occasional neck pain.

We have the below clinical trial running, as my symptoms seem to be mostly somatic, they will try a treatment with physical therapy starting next week. I'm not sure anyone has picked this one up here already.

Cost-effectiveness of a smartphone Application for Tinnitus Treatment (the CATT trial): a study protocol of a randomised controlled trial

Any tips or questions are welcome!

 

[Michael_]

Good luck! How did you find out about the trial?

 

[Robin R]

Good luck! How did you find out about the trial?

The ENT referred me after I said I can modulate the sound with my jaw. I hope the treatment will work...

 

[SarahMLFlemmer]

I am so sorry that you are experiencing this too.

In laymen's terms, is this just a sound therapy app on your phone or what?

 

[Robin R]

I am so sorry that you are experiencing this too.

In laymen's terms, is this just a sound therapy app on your phone or what?

Thanks for your comment! Honestly, I don't know about what the app is about, I'll be assigned to the control or experimental group on Wednesday.

It truly sucks and hope it'll get better someday. When it gets too intrusive, I put an earbud in with rain sounds and that helps a bit.

Can you tell me how you learned to cope?

 

[Josh59]

Sorry about your tinnitus. I hope it goes away.

Regarding physical therapy for your somatosensory tinnitus, could you please keep us informed?

I think this is in line with Sarah Michiels' studies with her team on this type of tinnitus. Supposedly, she has found manipulative techniques that can be used with a physiotherapist to reduce tinnitus. She must have talked about it at the AFREPA conference in France at the beginning of September, as well as in Dublin in June.

I hope it works for you.

 

[Robin R]

I'm almost a month in the clinical trial so here's an update.

I have to do several exercises every day (chin tucks in lying and upside position, massaging TMJ area, stretching jaw, shoulder exercises, etc) - repetitions and exercises are updated each week.

Currently I'm at month 3 with tinnitus and I think it's a little bit better, but I can't tell for sure if it's me habituating or if it's actually decreasing in volume. Sometimes I actively monitor it and say to myself "it's not as bad as it was" as I used to freak out when in a silent room. For a week now, I have mostly been able to sleep fine without masking (coming from sleepless nights and extreme anxiety).

 

[Somaticly]

@Robin R, how are you doing? Is it working?

 

[Robin R]

@Robin R, how are you doing? Is it working?

Hi, just logged in back again after more than a month to reply on your comment!

I stopped the clinical trial after two months as I didn't see any improvement.

Unfortunately it got so bad for me mentally that I ended up in a psych ward for a couple of weeks. I completely lost touch with reality with constant panic attacks, and tinnitus was all I could think/talk about. This was three months ago.

However, it got better: I got a hearing aid with a masking sound (even though I have perfect hearing according to all tests) which helped tremendously and helped me getting the focus off of it. I used it for a month, and never wore it since. I also honestly think that after a period of four months after the onset, the volume went down a bit. I still don't know what caused it, no one can tell.

Now it's still there but I see it more as an annoyance than something life-threatening. I probably habituated in some way. I hope it will continue to improve, but only time will tell.