Ugh! Rare disease meant I could hear my eyeballs move
Single flight triggered mother’s 10-year ordeal
MOST of us have experienced an annoying and often unexplained ringing in our ears.
But for one mother supersensitive hearing became a daily torment – leaving her listening to the sound of her own heart pumping, her neck creaking and even her eyes moving.
For ten years Philippa Thomson, 59, could hear her body parts moving, like something from ‘a horror movie’. Loud external sounds would make her head ‘vibrate’.
The publisher and writer, from North Berwick, East Lothian, believes the symptoms of a bizarre condition known as superior canal dehiscence syndrome (SCDS) were caused by air pressure changes during a flight.
It took ten operations to repair tiny holes which had formed in her left and right inner ears, but Miss Thomson is still affected by changes in atmospheric
‘It was like a form of torture’
pressure – meaning her health dependent on the weather.
She suffers extreme headaches in cold conditions or if it is wet and windy, and only feels at her best if the sun is shining and the weather is stable.
‘I wondered whether anyone else felt like this. I would never talk to people about it. I was embarrassed,’ she said.
‘My eyes made a clicking sound for a long time. My neck would also start creaking like in a horror movie. It’s quite creepy when you are hearing things that others can’t.
‘There was also the pulsatile tinnitus to endure – terrible whooshing and thumping noises in my ear from the sounds of my heartbeat pounding and the change in blood flow near the ear. I was hypersensitive to sounds – they would make my head vibrate. If someone slammed a door my head would literally be shaking with agony.’
She added: ‘Life became a constant battle just to live normally. It was like a form of torture sometimes.
‘I’m still very affected by barometric pressure changes which is will never go. I feel my best when it’s sunny – that’s when everything is functioning well.
‘When the pressure starts to drop with changeable weather, wind and rain, my head starts to feel like a lead weight. I look out the window to check the weather and I do plan my day around it.’
The hole in her left inner ear was discovered in 2007 after a flight four years earlier, which she believes triggered the condition. It was repaired by surgery in 2008.
However, in 2009 she was told she had a hole in her right inner ear which she thinks was caused by a childhood bike accident. Its effects – including sickness, vertigo and panic attacks – were heightened after her 2008 surgery, says Miss Thomson.
This made her very unsociable and affected her marriage. She underwent an operation in 2012 – but, as with most surgery for SCDS, it took around a year to recover from.
Miss Thomson said: ‘I used to get very anxious in social situations.
‘I told myself to get a grip because I was a confident and articulate person but it was a vicious cycle.’
Having finally recovered from the 2012 treatment, she said it has given her a new lease of life.
‘I’ve got my life back. I had no idea how much I was half living before,’ she said. ‘I don’t hear most of the noises any more but I still have a bit of tinnitus.’
Miss Thomson is now working to set up an organisation with other women to increase awareness and promote research into SCDS. She has also written a book called A Hole In My Life: Battling Chronic Dizziness.