My Story So Far — Tinnitus from Autoimmune Disease

[Lucy79]

Hi I have just discovered this site and thought I'd introduce myself plus see if there is anyone with a similar case like mine although I seem to have a few not just one.

I was born deaf, only being able to hear in right ear with a hearing aid. I had sudden hearing loss in my right ear completely about 8 years ago, just heard massive shrilling and hearing was gone. About two months later after being messed around by doctors who didn't believe me, I finally saw a specialist who was horrified I'd been left like this for so long, he put me on 2 months of steroids and my hearing returned which he was even surprised that it did after being left that long.

I have had continuous attacks which is being put down to autoimmune disease so every attack I have steroids have to be used. Obviously this isn't good for my body and has caused a lot of my conditions to be worse. I have been messed around by specialists leaving etc and the waiting and then now seeing a specialist who really couldn't give a monkies quite frankly.

My tinnitus is so bad I struggle to have the energy to lipread people which I am normally excellent at.
I currently work in a store so it is always noisy anyway, I'm a single mum with two teenage boys as well.

Only thing I find that helps it is having couple glasses of wine a night it goes in to the background. And at night I have fan on so when I wake up I listen to the fan which is my favourite time of day and evening then I get up and it all starts again.

Would appreciate it if any of you have some help ideas.

 

[Lilah]

Sorry to hear. Have you tried hearing aids with maskers? They might help.

How did your doctor diagnose that the tinnitus is caused by autoimmune issues? Also, what do you mean by constant attacks?

 

[Lucy79]

Hi Lilah,

No I haven't but I have trouble trying to prove that I do have some level of hearing left as they always go by hearing test with no hearing aid in I've told them I cannot hear without my hearing aid and the tinnitus confuses the results as to what I am hearing in the test but they don't really understand that so they go by the results that I'm severely deaf so they would not help me.

As for my attacks the same thing happens my hearing drops completely as the first time.

It's my immune system attacking my hearing along with a lot of other things related to the disease.

 

[Candy]

Hi Lucy,

Is your tinnitus in both ears? Have you considered a cochlear implant in one ear as I believe it can help with tinnitus perception?

Not sure if a wearable masker would work in your good ear? Do they give you antivirals or steroids alone?

A hearing regeneration pill is being trialled at the moment - @FGG might be able to give you a quick summary of drugs in the pipeline x

 

[Lucy79]

Hi Candy
They have mentioned about the implant but I don't feel at that stage yet plus it worry's me a bit having something that invasive done due to some risks plus if I don't like it I have no control over it if that makes sense with my aid I know I can turn off take out or change settings if that makes sense.

I am just given steroids.

Oh really I hadn't heard of the pill trial what's FFG stand for please ?

Thanks

 

[Lucy79]

And it's in my right ear as I have no hearing in left
Sorry forgot that bit

 

[Candy]

@Lucy79 tinnitus could still be in your deaf ear, it's not an external sound so one can have it in a deaf ear. As it's in your better ear having an implant in your deaf ear does not solve matters and I get that you have hearing left so wouldn't want to go down that route.

Interesting how the ear where the sound keeps on coming and going is more affected by the tinnitus.

At this stage a hearing aid with a masker is all we have... there are medications being trialled - look at the treatments section x

 

[Bartoli]

@Lucy79 tinnitus could still be in your deaf ear, it's not an external sound so one can have it in a deaf ear. As it's in your better ear having an implant in your deaf ear does not solve matters and I get that you have hearing left so wouldn't want to go down that route.

Interesting how the ear where the sound keeps on coming and going is more affected by the tinnitus.

At this stage a hearing aid with a masker is all we have... there are medications being trialled - look at the treatments section x

I think in this case it does make sense that the tinnitus is in the better ear.
If I'm reading correctly the other ear was deaf at birth, meaning there weren't any neural connections formed, whereas the OP had a sudden hearing loss in the good ear. That would be a trigger for the brain to start making up its own sound.

@Lucy79 I would try to stay away from Cochlear implants if you can because it will outrule the possibility of ever benefitting from regenerative medicine. Keep an eye on FX-322. Results should be by the end of this year.