What (really) are my options now?

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Nystagmite

I was diagnosed with Hyperacusis in 2012. In 2015, I noticed this started getting worse, at least that's what I thought the problem was.

I got referred to Audiology after GP decided there was nothing unusual (no wax or infection) in my ears. Hearing test was performed and I was told as someone who is visually impaired, being deaf isn't actually possible! (which, I am aware isn't true at all)

She said ENT may wish to see me. ENT appointment comes and he asks what medication do I take and what other conditions do I have. He decides that I have mild hearing loss in one ear and Auditory Processing Disorder. He says he thinks the most likely cause is a side effect of the medication I'm on.

I was then referred to a Hearing Therapist who wasn't that good either. I asked for something to help filter out noise. (too much noise and it just goes into one loud horrible noise) Slight problem - I can't see the switch...

Referred back to Audiology who gave me something; but it's too loud and makes my tinnitus worse.

It seems that everything is too loud or too small. Is there really anything out there that isn't too loud or too small?

VickiKirwin

Hi Nystagmite

Hyperacusis is an over-sensitivity to everyday sound around you. It sounds as if your Hearing Therapist may have been trying sound therapy with you but the technique/equipment being used hasn’t been helpful for you. But yes, there is definitely more that can be tried! 

The first thing we would usually do is help the person with hyperacusis to understand the condition better and particularly that everyday sounds at normal levels aren’t harmful. This should then encourage them to take the next step in using sound therapy to re-programme the auditory centres of the brain to listening to sound at increasing volumes without the sound becoming uncomfortable. It’s also really important not to avoid situations where there is noise. Unless sounds are dangerously loud (night clubs, shooting, motor racing etc), don’t use ear protection in everyday situations. The more you live in a quiet world, the more your brain becomes accustomed to that level of sound. 

You can get “noise generators” that are worn in the ear like hearing aids - they make a constant white noise (hissing) sound and as you say they can be fiddly if the wearer has difficulties manipulating the tiny controls. Generally I’d advise people to start using them very, very quietly (so you can only just hear it when in a quiet room) and wear like that all day (even when you move into a place where there is quiet background noise and you can’t hear the hiss any longer). Then gradually increase the volume over time. But you don’t have to do this with a sound generator in the ear, you could also use a “bedside noise generator”, or a CD player with a speaker in the room you’re in, or a tablet/MP3 player with headphones if you’re moving around more. You can buy CDs or download apps of white noise or other constant noises (waves, wind in the trees etc).  

Have a look at https://www.tinnitus.org.uk/hyperacusis for some good information on the condition. They also have a great Helpline 0800 018 0527 - if you call them they can give you some more advice on the options - and online forum where there are others with hyperacusis who can tell you what they’ve used to help https://healthunlocked.com/bta 

Vicki