Hyperacusis / Sound Sensitivity Syndrome – What happens when I hear a sound

What is Hyperacusis?

Hyperacusis, or Sound Sensitivity Syndrome, is a debilitating and an emotionally distressing condition where normal, everyday sounds become amplified and intolerable.

Turning a page in a book, unwrapping food in cellophane packaging or water running from a tap suddenly become booming sounds which make you flee screaming in pain.

It’s cause is unknown but it is often accompanied with hearing loss and tinnitus and is believed to be a problem in the way the brain processes sound rather than a mechanical issue with the ear.

For example, it’s thought that the sudden nature of my hearing loss confused my brain and it overcompensated by amplifying all sounds to an excruciating level.

As if that wasn’t bad enough, sound is processed in the same part of the brain that creates fear and panic. When the brain looses the ability to process sound in this way, noises are interpreted as acute danger and fear and panic overwhelm the body.

Hyperacusis often has devastating effects on people’s relationships, careers and their mental health as they struggle to cope with unavoidable everyday sounds.

The effect sound has on me

Everyday sounds have become my kryptonite. Here’s what happens when I hear them.

Jelly legs

The blood drains from my head and my legs turn to jelly. I have to cling onto whatever is nearby to stop me from falling down.

The hyperacusis has forced me to work from home. On the rare occasion I go into the office, I smile while I hold onto colleagues’ desks and chairs and hope they won’t notice I can’t stand up.

Toilets have become a good hiding place (until someone uses the hand drier). I lean my head and torso against the cubicle wall; the coldness of the wall brings me back into my body. I breath deeply to stop my heart racing. Slowly strength returns to my legs.

The sucker punch

When I encounter a group of people talking or hear music playing it’s feels like I’m being punched hard in the stomach.

I walk down a back street in central London. Suddenly a wall of sound stops me in my tracks. It feels like a heavy weight boxer is hitting me around the head and in the stomach. I see stars and cling to a wall to steady myself. Fifty feet away, outside a pub, the pavement is heaving with people enjoying an after work drink.

I somehow find the strength to stagger past them and collapse onto a nearby bench. The experience puts me off venturing beyond the quiet streets near my flat for the rest of the year.

Drained of energy

Tinnitus often keeps people awake. Not me. The hyperacusis means sounds drain all the energy from my body. I have to fall asleep. I’m passing out in fear.

One day my sister phones. I’ve just come back from a gentle yoga class and I’m about to drive to the supermarket. We rejoice that I’m strong enough to do two things in the same day.

We chat for an hour but the sound of my own voice echoes around my head and sucks the energy out of me. My sister obviously thinks I’m doing well that day but by the end of the call I can hardly stand up let alone make it to the supermarket. I’m too tired to go outside for the next three days and have to live off porridge oats and pasta with olive oil as there’s other no food in the house.

Under attack

Sounds are so painful that my brain views anyone who even suggests exposing me to them as someone who’s trying to torture me.

My thought process goes like this:

FRIEND:
Yesterday I went to a really quiet cafe near your flat. How about we meet there? I promise, hardly anyone was in there.  It was very quiet.

MY BRAIN:
Don’t trust them. They want to hurt me.

BOSS:
It would be really helpful if you’d come into the office for an hour or two. I’ve booked meeting room 1.08 so it will be quiet and we won’t be disturbed.

MY BRAIN:
Unbelievable! The vent in that meeting room is really loud and I’ll have to walk past dozens of people and printers. She wants to kill me. I must hang up the phone, hide and not speak to her again.

My responses may seem completely irrational but they’re not. My brain is doing exactly what it’s meant to do when faced with mortal danger. It’s gone into self preservation, flight and fight mode.

That said, it’s insane! No wonder hyperacusis can devastate people’s careers and relationships.

Treatments – western medicine

Sound therapy is used to retrain the brain. It’s a slow, painful and scary process.

I met a fellow sufferer who was cured by wearing sound generators. These are similar to hearing aids but they emit pink noise to mask everyday sounds.

She started by wearing them around the house and gradually built up her tolerance to sounds by walking along London streets, going into cafes and using public transport.

Fear and panic often overwhelmed her and she’d have to hail a cab to quickly get home.

She refused to give up. It took about a year but she successfully retrained her brain. She can now sit in a noisy London pub without flinching.

Treatments – my approach

I’m told sound generators won’t work for me because they will exacerbate my tinnitus. Instead I’m given a CD of everyday sounds such as someone vacuum cleaning and a busy restaurant.

I start playing the CD very softly but instantly flee into the kitchen. My legs are shaking so violently that I have to lean against kitchen cabinets, I’m white as a sheet and I’m manically shoving slices of bread into my mouth. Why am I eating bread? I’m not even hungry.

This coincides with me finally deciding to listen to my body and stop forcing myself to do things that my body can’t tolerate (see July 16: Letting Everything Go). Jelly legs, sucker punches and overwhelming tiredness are clear signs that my body isn’t ready to be exposed to everyday sounds.

I turn the CD off and don’t listen to it again. Over the next year I do the opposite of everything the hospital tells me because it feels wrong.

I sit in a silent flat instead of having the radio on in the background and wear noise cancelling headphones on public transport rather than expose myself to the sounds of the London Underground.

Instead I focus on alternative medicine. It takes a long time, just as it would have if I’d have used sound therapy, but as the tinnitus and my overall well-being has improved, so has the hyperacusis.

I’m still on my healing journey and will write further posts about the alternative treatments which have been most beneficial. But I’m now hopeful that, in the not too distant future, I’ll also be able to sit in a noisy London pub without flinching.

And boy will I celebrate when I do.

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