Mum HEARS her own eyes moving, heart beating and blood pumping – and says it's torture

Pam Roberts, 49, has become a recluse due to the constant "torture" of being able to hear everything going on inside her body.

The mum-of-two from Maidstone, Kent, is plagued by the noise of her food digesting, blood pumping, muscles and bones moving, heart beating and even her own breath.

It's due to small holes in her left ear canal.

She now stays at home rather than socialising or taking her little boy to baby groups because the incessant racket in her left ear sounds like "a broken kazoo".

It was after fainting and cracking her head on a ceramic bath that Pam first started noticing the symptoms in June 2015.

However, it took more than a year to be diagnosed with superior semicircular canal dehiscence (SSCD), which less than 2 per cent of the population have.

After a failed corrective operation in the UK, Pam and husband Martyn are now seeking to raise £5,500 for tests to be approved for life-changing brain surgery in the US to help her "get her life back".

"It's horrible, a form of torture for me," said Pam.

"I feel like running away from it all. I want to curl up in the foetal position it's so distressing for me.

"Everyday 24/7 I feel dizzy, off balance. I can hear the insides of my body. I can hear my eyeballs moving from side to side. I can hear my stomach digesting.

"It's so loud and I always turn around and think people can hear it, but then I realise that nobody can hear my stomach, it's just me."

Pam says that she knows exactly when she's got an upset stomach coming on because she can hear it happening.

"I hear my pulse, my heartbeat, like a dual beat in my ear all the time. It's like when you have an ultrasound and you hear your baby's heartbeat.

"I hear a whooshing noise which I think is my blood in my ear. I hear my voice, and I have to use the other ear for the phone because it's too distorted otherwise.

"I can hear my footsteps. I can hear my food. Even when I eat a hash brown, the crunching is just horrible.

"I still like my food so I just try and ignore it. If I'm eating soup and things like that then that's okay, but it's crunchy foods [that are bad]."

Pam can't eat things like crisps or pork crackling, which she says is like "an earthquake in my head".

"I hear all these noises so I can't really hear people properly. It's like [the sound of] a broken kazoo.

"For that reason, I don't want to socialise. It sounds awful.

What is SSDC?

Superior Semi-circular Canal Dehiscence Syndrome (SSCD) is a very rare medical condition where the thinning or absence of a portion of the bone in the inner ear canal causes balance disorders and a hypersensitivity to sound.

Symptoms include:

  • dizziness
  • vertigo
  • tinnitus
  • hearing loss
  • echoes of sound when you talk and eat
  • fullness in ears
  • hearing internal noises like your heartbeat (louder than normal)

In Pam's case, that's lead to hyperacusis –  a condition in which everyday noises become unbearably or painfully loud.

The disorder is often chronic and usually accompanied by tinnitus (ringing in the ears), but can occur in patients who have little or no measurable hearing loss.

"I feel really sad because my friends try and invite me to places and I'm always finding excuses to tell them no because it sounds lame all the time.

"People just don't get it. It's made worse in noisier places. When it's noisier I have to talk louder, and I can hear my voice really much louder in my left ear.

"I get invited to visit family or friends and I'm thinking it's so distressing for me. They're going to have drinks, it'll be in a noisy place and they'll be chatting and for me it's just torture.

"It's distressing for me to be in a public place and having to have conversations when all I can hear is my voice really loudly in my left ear. It's too much for me. It's affecting my whole life."

After the fall, medics put her condition down to anxiety. Eventually, a CT scan revealed that the entrepreneur had SSCD.

Doctors tried to fill in the tiny holes in her ear canal in an NHS-funded op but Pam was devasted to find that her symptoms returned louder – so much so that she started to hear her own eyeballs moving.

She now says that the condition is robbing her of her happiness and fears that it's stopping her from being a good mum to her two kids, Bethany, six and Bobbie, two.

Pam, who is originally from Manchester, said: "I've had surgery but it hasn't worked.

"I never heard my eyeballs move before. I hear my breathing like Darth Vader in my nostril. It's like I have a mouth in my ear. I hear my breathing all the time and I never heard that.

"My right ear is okay, but because all this happened in my left ear my right ear is working too hard.

"I get hyperacusis where my hearing is so good in that ear that it is working for my left ear. It's almost like the hearing of a bat it is so good, but my ear gets tired.

"I was told that that would go when the left ear gets fixed but of course my left ear never got fixed.

"Mentally it's affected me in such a massive way. I'm a shadow of the person I used to be.

"I withdraw all of the time. I'm just not happy anymore. I don't go out with Bobbie to baby groups. I just sit in.

"I feel like I'm not a good mum. That's the worst bit to me. I just want to be a good mum and a partner to Martyn.

"I try and be there all the time for my kids and do things for them, but [SSCD] stops me from being happy like I used to be.

"I just want to enjoy them. I was always joking and I was so outgoing. It's kind of like I've lost my way and my mojo. It's like I'm not fully me. It's awful to feel like this."

Pam now hopes to be approved for the middle fossa craniotomy with SSCD specialists in the US, which is not currently funded by the NHS.

If approved, it'll cost her £66,606.

"The surgery is terrifying but I'd rather have it than have to go about my life in this way. I'm not really living. I'm just existing and carrying on," the cleaning business owner said.

"It's really scary to think about how we're going to raise that. Our only asset is our house, and we'll have to sell up to get my life back.

"That's how bad it is. Even if we did that, because we've only been in the house for two years we'd only be getting about £40,000.

"Then we were thinking we would just rent because we need my life back.

"The only things that see me through are the cuddles with Bobbie throughout the day and being there for Bethany after school.

"I have things on throughout the day like the radio for background noise. I can't cope without background noises to try and drown the sound out of the 'whoosh, whoosh' in my ear.

"I want to get my life and be happy and just do things with them and enjoy them."

You can donate to Pam's cause here.

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