'Suicide disease' Wotton-under-Edge mum suffers excruciating pain from Trigeminal Neuralgia
BRUSHING her teeth or cuddling her daughter can leave a Wotton-under-Edge mother in agony as she suffers from a little-known nerve disorder.
Mother-of-two Ali Lidbetter has recently been diagnosed with Trigeminal Neuralgia, a disorder so painful it is known as ‘suicide disease’.
The 35-year-old is one of the 15,000 people worldwide who suffer from the neuropathic disorder in which pressure on the largest nerve inside the skull causes bouts of intense pain in the face.
However it remains relatively unknown and is often misdiagnosed by medical professionals lacking specialist knowledge about facial pain.
Ali started feeling a niggling pain which she originally attributed to bad toothache, which was ruled out by her dentist who first mentioned the nerve disorder.
While being diagnosed and trialling different medication, her painful episodes had increased in intensity and length to up to a minute at a time.
“It was just getting excruciating,” she said. “Your whole body is frozen; it just drops you to your knees. It felt like someone was electrocuting my head.”
The pain, likened to an electric shock, can happen at random but is particularly provoked by talking, eating and cleaning teeth.
It’s left Ali having to liquidise meals made for her by husband Pete and warn her four-year-old daughter Lucy and one-year-old son Freddy to be gentle around her face.
Ali added: “I’m paranoid that my personality is being taken away as it hurts when I laugh or talk. You start turning into a quiet person.”
She has found some relief with a hardcore first line anticonvulsant treatment, Carbamazepine, which is also used to treat epilepsy, but is currently having to change medication again after suffering a dangerous drop in her white blood cell count.
Treatment options ahead include brain surgery to separate blood vessels from nerves to reduce the pressure causing the pain.
Ali is supporting the first International Trigeminal Neuralgia Awareness Day on Monday, October 7 and is asking people to sign a petition for the World Health Organisation to add the disease to their roster and open up future research opportunities. You can sign the petition at www.tnnme.com
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