Cochlear Hydrops Journey — Or So We Think

[YoHig]

Hi All, I'm new here. Quick background - May 2016 sitting at work, the room spun for 5 seconds, I stopped my chair and then my right ear felt full of wax. Hearing was muffled and oddly distorted.

Went straight to my GP - diagnoses me with infection. NOPE! After months of different Drs, ENTs and Audiograms have been normal up until May this year - but I know my hearing is definitely not right - still muffled and distorted. Fourth ENT diagnosed me with cochlear hydrops.

No further changes until September 2017 when I notice a shift in my hearing again - louder tinnitus and ear feels like it will explode! Audiogram results - moderate LF hearing loss!

So for last month I've been dealing with fluctuating levels of LF hearing loss right ear - taking steroids on lengthy dose and going out of my mind worrying when this will ever end!

 

[GregCA]

No further changes until September 2017 when I notice a shift in my hearing again - louder tinnitus and ear feels like it will explode! Audiogram results - moderate LF hearing loss!

Are your losses only sensorineural?

 

[YoHig]

Yes Right ear only. Low frequency sensorineural.

 

[FionaR]

Hello YoHig,
I don't know which country you are from but in the UK you are given Betahistine. I've never heard of steriods been given. Do steriods ever do anyone any good??
I eventually weaned myself off Betahistine it as I don't think it did me any good either.
However, I'm a bit of an odd case and although initially diagnosed with Menieres disease two years ago, even though I didn't have the classic symptoms, over the last year the consultants are not sure.
I know what you mean though about going out of your mind. The consultant I saw the other week said sometimes doctors just don't know what's wrong with people's ears.
Research is being done but the major problem is the only safe drug they can give you is Betahistine which has been proven not to be effective.

 

[YoHig]

I'm in Australia. Yes I've been taking Betahistine since May this year - not sure it's doing anything so am weaning myself off it. Steroids are supposed to help with any inflammation in the ear causing hearing loss. I seemed to improve but then took another dive a week after coming off them. ENT thought it might be autoimmune but my follow up auidiogram showed a teeny improvement so he said not enough to warrant that. Now I'm dealing with daily fluctuating tinnitus and spiking low frequency hearing loss that comes and goes. It's just maddening!