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.

I developed cochlear hydrops symptoms last year and became frustrated with how fragmented everything was:

• Occasional audiogram from ENT or done at home through Apple Hearing test (which requires both ears to be tested)
• No way to easily track low-frequency fluctuations over weeks/ months
• ENT appointments relying on formal tests and memory only
• No easy way to correlate whether medications, flights, altitude etc were easing or causing symptoms

So I built an app. It now:

• Runs home hearing tests configurable to specific ear or frequencies in under a minute.
• Imports your audiogram history from Apple Health automatically
• Tracks low-frequency fluctuations over time with a clear visual chart that is configurable
• Logs medication, symptoms, sodium, sleep, tinnitus, fullness
• Generates a visual ENT report showing your hearing history, medications and key events - something worth actually bringing to an appointment

I've attached a graphic from ENT report generated from my own 8 months of data.

https://preview.redd.it/bxjdsfhhaw0h1.png?width=1656&format=png&auto=webp&s=441c18f5a2897f0839b4aa805566cf0a106a67b2

The focus is not diagnosis or treatment advice. The goal is helping people see patterns more clearly between appointments, and walk into ENT consultations with data rather than memory. Currently in beta on iOS.

Looking for people with:

• Ménière's disease
• cochlear hydrops
• fluctuating low-frequency hearing loss
• episodic tinnitus

to test it, see if it adds value and tell me where it breaks.

Register at http://vestia.health for ios access now and to be notified of android version availability.

Thanks,