Fluctuating HL

[RoseRodent]

Does anyone else have fluctuating hearing loss? Do you know why? They never really bothered to get to the bottom of my loss, after years of telling me I'd grow out of it I turned 13 and still hadn't so they sent me to the hearing aid clinic. There is some likelihood that it's related to Ehlers-Danlos Syndrome, but there is also some heriditary loss which may be from an EDS-free parent. It might be LVAS/EVAS but again tests are incomplete, and that can also be related to EDS it seems. There is some congestion-related fluctation that responds to barometric pressure (I go totally profound after a flight) and also I have "silent tinnitus" which sounds like a contradiction but basically I get noises in my ear that mask other sound but I can no longer hear that pitch where I always got the noises, so I just get a random blanking.

I'm interested if anyone else had major fluctuations and if they know why at all, and what you do about it.

Thanks.

 

[stormeing]

i see this is an old, old posting, but i do have a fluctuation in hearing. i have almost always had it, waardensburg runs in my family, so the Deafhood wasn't an issue, but i have dark hair, dark eyes, my eyes aren't spaced like other's... i imagine i am recessive. i experience tinnitus though, and never is it just typical ringing- i have degrees of a huge diesel generator banging around, i am not eligible for implants (to resolve tinnitus- NOT HEARING) due to CSF leaks.
so... yeah, it stinks but it is something that others experience.
sorry!