Musician with Pulsatile Tinnitus :(

Hi all, as later today I have my first serious investigation into the depressingly insistent, loud and very unwelcome noise I get from my stupid ears, I thought perhaps it was time to join one of the communities I have lurked around from time to time. As it's now gone 5am and I still can't sleep due to the swoosht swoosht swoosht in my ears, I figured now's the time.

I'm not sure how long the PT has been around... at first it was only if I turned my head away from the ear in question, and only in the right ear. I've also had some occasional regular T for a while, but it certainly isn't with me 24/7. Then the PT became both ears and got louder, and I barely had to turn my head. I saw my first ENT then, and he was worse than useless. He told me that yes I had objective pulsatile tinnitus, most likely it was venous hum and there was nothing he could do for me. No investigation, nothing.

So, for the last few years I've tried very hard to live with it. However, over this period it has continued to get a lot worse. It's now loud enough to interfere with conversations and my ability to practice as a classical singer and instrumentalist, plus both ears are 'on' almost no matter how I turn my head. My husband can now even hear it when pressing his ear next to mine. Finally, after doing some reading online (including here) I asked my GP to send me for a second opinion. Wow, massive difference.

The new ENT has a few diagnosis in mind, top of his list is SCDS. I have a MRI/MRA and a CT today, plus some sort of balance test at a hearing test centre. I had a recent bout of pneumonia that landed me in hospital for a week (I have an immune related disease and get sick easily), and immediately after coughing and blowing my nose I had several episodes of the room spinning to the left very badly. I thought at the time it must have been due to some weird congestion thing, but seems that's pretty unlikely. I hear the muscles in my head twitching, and blinking my eyes is like loudly turning the page in a book. All these things are adding up to SCDS in his eyes I guess. Best news is he says there's a pretty high likelihood that he could help me if that's the case.

So the moral of the story is don't give up and just accept your fate. Especially for us pulsatiles, we have a pretty reasonable chance of getting some sort of diagnosis. A specialist shouldn't ever get away with saying "deal with it", without even any advice on how exactly to do that.

Are there other classical musos out there with pretty loud tinnitus, and how do you deal with it? If a thinning or even a hole in my skull is the cause of all this, I'm kinda terrified of surgery mucking up my hearing more, as my hearing is really so important to me.

Anyway, nice to meet you all, sorry for the essay of an introduction!

~Alyssa xo

 

@Haryssia - welcome!
If you have SCDS you should be able to see it on imaging (CT). I'm not sure what the treatment is for SCDS, but I agree with you to not give up.
Doctors aren't the ones who have to "live with it" so they dish out that advice very easily.