A MUM has been left tortured by a rare brain condition that has made her hearing so sensitive she can hear her own heartbeat — and even the sound of her eyeballs moving.
Pam Roberts, 49, suffers from Superior Semicircular Canal Dehiscence (SSCD) which means she can constantly hear her heart beating and her body digesting food.
The rare condition has caused a hole between her brain and her inner ear which means she is forced to listen to the sounds of her body 24 hours per day.
Pam, from Maidstone in Kent, said: ‘The most difficult thing for me is having my voice all the time like a broken kazoo — I can’t ever escape it.
‘There are really bad days where I don’t answer the phone because I cannot bear to talk and have to listen to it.
‘I have to have background noise on all the time to distract me from the sounds.
‘My older sister loves live music and my mum likes going shopping at the big shopping centres and I used to be able to do those things with them but the noise is just too painful now.
‘It feels horrible to be letting my friends down all the time — to my friends and family I look normal so a lot of people just don’t realise I’m suffering.
‘It affects you mentally and makes you so depressed — I am a shell of my former self.’
Canal dehiscence refers to an opening in the bone that covers part of the inner ear and can affect a person’s hearing and balance.
Although the true cause is unknown, it is thought the condition can be present from birth and the average age for diagnosis is 45.
Only one per cent of the population suffer from SSCD and Pam has spoken with just ten other Brits who have the syndrome, via online forums.
Pam was diagnosed in 2015 and her partner Martyn Smith said the family have since been ‘torn apart by her condition.’
The 41-year-old X-ray engineer said: ‘Pam hides herself away and has become a recluse seeking refuge in the house — she has become a very different person to the old Pam.
‘Having a social life is now too distressing for her as she cannot stand to even talk.
‘Every day and all day, she hears the insides of her body – her eye balls moving, her footsteps, her own voice too loud inside her head and her breathing.
‘She also feels out of balance and dizzy like the world is spinning.’
The couple have two children — Bethany, six and Bobbie, two — and Pam had to cope with her condition even during her second pregnancy.
Pam said: ‘The children just want to play and they scream when they are naturally excited — as children do — but it’s so painful for me.
‘Bethany understands now and sometimes she will tell other children “don’t shout, my mummy doesn’t like it.”
‘I hate that she has to restrict herself for me but it also shows her empathy — she is amazing and that’s lovely to see.’
Martyn added: ‘It breaks my heart everyday to see her suffering and our children need their mum back well and happy and they are ‘missing out on having a fully functioning mother.
‘Pam does her best but there are times when she rages about the symptoms, and other times when she withdraws completely.’
The mum-of-two underwent surgery in the UK last year when she was told by doctors they would resolve the problem but it made her symptoms worse.
She said: ‘That was devastating — I thought the surgery was going to give me my life back but things got even worse after that.’
Martyn has since launched a fundraising page in a bid to raise the £5,500 needed to fly her to the US for further tests and surgery.
Martyn said: ‘Our family is being torn apart by this condition and Pam’s mental state caused by the debilitating symptoms she experiences 24/7 is affecting all of our lives.
‘Some days there are glimpses of the woman I fell in love with; a beautiful vibrant woman and mother but those days are rare.
‘Sadly, Pam had a failed surgery in the UK which actually made her symptoms much worse.
‘There is no real knowledge of this condition in the UK – few procedures have been performed by a couple of surgeons who are restricted to a single procedure due to cost to the NHS.
‘So Pam’s only option to get her life back is brain surgery — craniotomy — with an SSCD expert in USA.’
The family need to raise $7,000 (£5,400) which will pay for Pam to undergo all the necessary tests from top SSCD specialist Dr Gianoli in the USA.
If they hit their target, they can then begin to plan for the brain surgery she needs.