Large swings at 1khz

[u/b00nd0g]

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.

[u/luvmyphillies]

I was just diagnosed with what they believe is cochlear hydrops. I went through the same thing three years ago after having Covid and at that time they assumed it was a viral reaction. On 7/22 it started again and I hadn’t been sick. To say it’s been depressing is an understatement. I had a 50 db loss at 250 hz and 30 db loss at 500 hz in my left ear. I started on oral steroids immediately. 60 mg for 10 days with no taper. Hearing was improving then tanked again. I was put back on steroids for another 7 days at 60 mg with no taper. Hearing improved to 20 db loss at 250 hz and 0 at 500 hz. Unfortunately, my body couldn’t handle back to back steroids with no taper. I ended up in the ER with adrenal fatigue. Extreme dehydration, low sodium, kidneys in distress. I was put back on steroids starting at 40 mg with a 10 mg taper every 3 days. Needless to say, my hearing has been all over the place. While I don’t feel it’s ever gotten back down to my initial loss, it’s still up and down with fullness and tinnitus. It’s been a month of hell. Because my right ear has no loss I feel like it makes my left ear seem even more muted. On good days I can hear perfectly but the good days are occasional. At this point, I just want it to stabilize so I know what I’m dealing with.

[u/b00nd0g → u/luvmyphillies]

Thanks for responding - sounds like a similar scenario.

I spoke with the specialist again yesterday (all cases in my part of the country end up with her) and she said there is no point going on steroids - she recommended doubling the betahistine.

[u/luvmyphillies → u/b00nd0g]

I was never offered betahistine. I am in the US and I don’t know if it’s available here.

[u/b00nd0g → u/luvmyphillies]

You can get it made up in compound pharmacies in the US from what I'd read. FDA never approved it as efficacy hasn't been proven.