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Variable hearing loss / variable perception?

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Hello All

I've been struggling with worsening hearing loss since about 2019 - not helped by having had profound loss in my right side since forever.

The biggest issue I face is that my hearing changes dramatically most days. I cant put a reason on it, but could be worse when I'm tired - but not always. I fit my own aids - partly because of this and have seen (through direct) changes of 20db - or what is stranger, no measured changes but still huge drops in my perceived speech perception. I have trouble understanding basic conversations - even in quiet rooms now, despite an NHS Audi very kindly doing on my private Oticon Real 1 and telling me she couldn't have got the fit better herself!

Nothing definite from years of investigations in UK hospitals except the last I had did show a blood vessel crossing my 8th cranial nerve on my hearing side, which could be a contributing cause of the constant pulsatile tinnitus I also have.

Has anyone come across anything like this and had a more positive outcome than being told 'you're imagining it'? This has basically been career ending for me.

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Edited

Do you have acoustic reflexes? Have you had an electrophysiological assessment using auditory brainstem response recordings to rule out auditory neuropathy spectrum disorder? Does your hearing appear to fluctuate with the temperature of the environment?

In reply to @Mustbemad

I've been wearing aids for ten years, and during that period my hearing loss has gone from mild/moderate to moderate/severe. SSHL 18 months ago leaving me with pulsatile tinnitus, and a constant pounding in my right ear. My residual hearing fluctuates from day to day, usually worsens late afternoon to evening.

In reply to @Hearing_Potential

Thanks for this reply - no - I've never had any of these tests despite being seen at Addenbrookes since 2019. I can't say I've noticed any temperature dependence, but then I've not been looking. My experience has been very much that I've had to drive all the investigations as the consultants there don't seem curious enough to suggest anything. I have another appointment in October so I'll bring this up then.

In reply to @Mustbemad

It's very easy to perform acoustic reflex testing as a quick screener for this. If you don't have acoustic reflexes then it is important to rule out as the cause of your hearing loss. It isn't a condition that was known to audiology prior to the 1980s and it is only screened for at a population level where newborn hearing screening programs are present and are exclusively using automated auditory brainstem response recordings as the screening test. There will be adults with hearing loss who haven't yet had a proper diagnosis because it was never considered as part of differential diagnosis process, but simply bundled under the "sensorineural" label.

The treatment for ANSD can be quite different though, especially with fluctuating hearing. In the case of certain specific genetic causes there are also gene-based therapies being trialed that have improved hearing in some but not all individuals.

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