Is this tinnitus, or something else?

[OnSecondThoughts]

So, I have seen my GP and also a private consultant, had audiology tests done, and have been told something along the lines of "It's tinnitus and age-related hearing loss". Fair enouh. However, my exact symptoms are not like what anyone else with tinnitus has told me (or that I've read about), and so I just wanted to ask if anyone else has got these symptoms? Is it just a more unusual form of tinnitus or might it be something else?

So, whenever I read about tinnitus (or someone speaks to me about their symptoms) they say it is like a ringing in the ears, or a white noise that is worst during silence (eg at night) and that they might put a radio on or try a white noise generator to try and "drown it out". My experience is the total opposite to this: When I am in a silent place, or at night in bed, it's almost no problem at all. There is some faint backround hiss in my ears (like high-pitched guitar feedback) but I can deal with it easily.
The problem for me is a high-pitched distortion in my ears that is directly proportional to the volume of sounds around me. The louder the background noise, the worse the distortion. I first noticed it about 16 months ago, when I noticed that loud sounds were accompanied by a high-pitched whistling distortion-noise in one ear. Since then it has got progressively worse, and now all sound has got this distortion on top of it. The worst part of it is definitely the sound of my own voice inside my head - this is now massively distorted, and it sounds like the vocals of John Foxx on the 1977 Ultravox song "Wide Boys", or, say, Julian Casablancas' vocals on the first Strokes album "Is This It" (look them up on Youtube). That's what my own voice sounds like in my head. It's as if my eardrums have turned into tinfoil or something.
(I'm in my mid 50's, for reference).

As I said above, this does not match with other people's usual descriptions of age-related tinnitus, and so I just wanted to ask - does what I have described match your symptoms? Is this just another form of age-related hearing loss, or does it sound like some other disease/infirmity?
Thanks in advance for any replies.

I have dreadful tinnitus, to me it’s just a loud high pitched noise constantly in my ear coupled with a static hiss. Sometimes for a bit of extra fun I have pulsatile tinnitus which is the same but in time with your heartbeat.
It’s a bit like torture.
I have mild hearing loss with it but ironically also find very loud noises quite painful. So I don’t know what you are experiencing but it doesn’t sound similar to mine. Have you had an MRI - I’m presuming you have if you’ve been seen privately? That should have ruled out anything nasty.

It’s such a common condition but which causes such utter misery I wish more money was being put into research to do something about it. For non-sufferers, please just take a second to imagine never, ever, EVER getting a second of peace and quiet…welcome to the world of tinnitus.
😨

OP I remembered this thread, not sure if it's similar to what you are experiencing

https://www.mumsnet.com/talk/general_health/1020526-everyone-sounds-like-a-robot-help

I have tinnitus but not as you describe OP. It's a low rumbling for me. Far more discernable when it's very quiet. The only time it ramps up is just before I have a histamine attack - it's my first sign that's going to happen. So weird.

I do also have hyperacusis so cannot bear many noises, but again, no distortion of sound. However it is possible to have distortion of sound with hyperacusis and I'd say in my non-medically qualified opinion that you do have hyperacusis as well as tinnitus. If so, stay well away from an MRI! Could make things far, far worse. I refused an MRI for that very reason.

As for treatment for hyperacusis, I wouldn't hold my breath. I've been waiting a lifetime for some sort of breakthrough in research but it just hasn't happened, sadly. I think probably because it's not life-threatening and is pretty rare.

There could be something else going on that is causing this that can be sorted out though. Was the consultant you saw an ENT specialist?

I have tinnutes. Recently with a cold I have noticed that when I put kettle on, drive the noise gets louder like it wants to compete with the e external noise? It's definitely a thing. Has yours improved ?

I have permanent pulsatile tinnitus. Had it for two years now. MRI clear.
Whoosh whoosh whoosh 24/7. I can tell you my heart rate at any given moment just by listening.

So sorry to hear this. How do you get use to it?

I sometimes get pulsative tinitus, and I have the high pitched kind probably all of the time.

I've never seen my GP about this - should I do that?

I have been told if it's pulsative you should get it checked out and have a mri. Good luck.