newbie

[bmb64]

Hi all I’m new to this group.

I was diagnosed 18 months ago with tinnitus after I went the to my local Boots for hearing test and they said I had a 60% loss in my left ear, I was rather surprised. I was referred to audiologist given a hearing aid and that was that. Had two sessions of tinnitus therapy on how to cope with it but it’s seems to have gotten worse. Both ears 24/7 like a wireless in between stations all day and ringing in one ear and clicking in the other.i also have this other thing, I tried to explain but they didn’t seem to understand me, I can make noises in my ears by moving certain muscles ( hard to explain) but it drives me mad. I googled it and thought it could tonic tensor tympani syndrome but therapist just blanked me. Made me feel as if I was exaggerating. Would love to know if anyone understands what I’m talking about. Thanks sorry for long text 🙉

[Potter57]

bmb64

Is this with your hearing aid in? Has this been more or less since you had the aid?

[bmb64 in reply to Potter57]

No it’s both the aid does help cover the tinnitus a little in my left ear but not the strange noises whooshing.s

[Fridays_Child_62]

Try living without the hearing aids for a few days and see how it goes. My tinnitus got worse after about a year of wearing hearing aids but when I stopped wearing them, I'd say it became generally 'milder'. My tinnitus is reactive to external sound, so I think it was reacting to the boosted high frequencies of the hearing aids.

Regarding the other thing, can you explain more? I'm not sure what you mean by saying you get a noise in your ear when you move certain muscles - which muscles and what is the noise like? TTTS is a triggering of an ear muscle in response to sound, which doesn't seem like the same thing. I had something similar for more than three years and it was hard to live with. GPs and audiologists probably don't know about conditions like TTTS and an ENT consultant in the NHS brushed my concerns aside as 'rare'.

[bmb64 in reply to Fridays_Child_62]

Thanks for your reply, atm I’m not wearing my aid due to ear infections in both ears, and I did go without for 2 months as our dog ate it 😬

I suffer from constant left sided headache everyday day in medication and under the neurologist.

The weird noises are like an echoing noise going through from one ear to other whooshing I can literally make it happen or it also happens voluntarily, I also got told that’s very rare, and even by one audiologist I had superpowers 🤣

[Fridays_Child_62 in reply to bmb64]

I've heard of people being able to move the ear muscle voluntarily by just thinking about it. But when the ear muscle moves, the sound is more of a thud for me, although some people report a click. Echoing and whooshing put me in mind of maybe a eustachian tube issue, but I'm not an expert. I guess it could be related to your headache problem. Have you told your neurologist about it?

[bmb64 in reply to Fridays_Child_62]

I mentioned it at the beginning to ENT and was referred for MRI everything was clear so ENT discharged me, when I brought it up to my neurologist he didn’t seem concerned just saying that nothing showed up on scan.

[Happyrosie]

tinnitus UK, the charity, might have some information on this - have a look at the website and maybe give them a ring.

[bmb64 in reply to Happyrosie]

Thanks Happyrosie, your name just made me smile 😊

[Cabbageears]

hello i have tinitus as wll and it s been really hard, so i understand- also i understand the making noise with your ears that YOU can hear by tensing muscles - i can do that with my face , jaw movements and eye/eye lid mivement and it affects inner sounds, you re not crazy!

[bmb64 in reply to Cabbageears]

Thanks for replying and reassuring me I’m not going crazy 🤪 have you ever mentioned it to your doctor/ audiologist before?