r/CochlearHydrops

Hey,

Am hoping someone might have some experience that could be relevant:

I have had CH for nearly a year - typical pattern with loss at ~40db for 250 and 500hz, with diplacusis, pressure and tinnitus.

I had a flare up to 50db loss at 1khz at Christmas - took some steroids (which may or may not have made a difference) and it resolved.

Apart from that I have been close to 0db loss at 1khz and stable since Jan. At one stage through April/ May looked like it was getting better/ recovering across all frequencies.

In the past couple of weeks I have seen a couple of flare ups from 0db loss to about 40db at 1khz and 20 at 2khz. I waited to see what would happen last week and it resolved fully. I met with my ENT and she was relaxed about it - said that the recoverability was encouraging.

This morning it is back up again at the 40 and extending into 20db.

It is not bothering me - it just sounds like the usual tinnitus, but my hearing is definitely worse.

I am not sure whether the steroids made any difference previously and don't want to be the guy running into the ENT department every time my hearing takes a dip. If I couldn't measure this I would just be getting on with things.

Interested in whether others are seeing these types of swings with CH, and any opinions on whether intervention is warranted.

Does this just come with the condition? As I understand it this is a different mechanism to SSHL so I am not sure whether steroids would make a difference and don't want to spend my life on them either..

All measurements done on Apple Airpods but these have always approximated Clinical audiograms so I am confident they are reasonably accurate.

One rule… POSITIVITY ONLY! So many of us need it, including myself. I’ve come to conclusion that we come on here when we don’t feel good and we are sad and when we come looking for answers. We rarely find ourselves on here when life is GOOD.

So many people disappear when they recover, they no longer need to search for answers, or lean on another person in our community. The best stories are hidden from us.

That being said, I’m about 3 months into an episode of cochlear hydrops with a sustained 20-35db fluctuation below 250hz. I responded beautifully to dexamethasone injections, but only for a few days. Without getting into the weeds of medications, terrible distortion, the full story of the past 3 months, the panic attacks, anxiety, depression, because I’ve felt it all, let’s talk about the really good.

Give me hope. Give you hope. Share the (really) good stories. Okay, GO! 🏁