A Hertfordshire woman has battled mysterious symptoms for most of her life, only to discover at the age of 41 that she had been born with a rare and debilitating brain condition.
Charlie Rolstone has long been plagued by ‘subtle’ health problems, including migraines and severe motion sickness caused by watching television and looking at her phone.
The jewelry store owner “ignored” the symptoms during her teenage years, believing they were “quirks” that she would “grow out of.”
But in September 2021, Ms Rolstone collapsed on the way home from the local pub, prompting her partner to rush her to hospital.
Doctors performed a plethora of tests and eventually discovered that she had something called Chiari malformation: a condition in which the lower part of the brain pushes down into the spinal canal, causing a host of problems.
Chiari malformations are usually present at birth and are caused by DNA mutations that make the brain too large for the skull.
The condition is thought to affect around one in a thousand people, with most cases discovered in adulthood.
The excessive pressure on the brain can result in a range of symptoms, including headaches, neck pain, dizziness, hearing loss, difficulty swallowing, nausea and seizures.
Charlie Rolstone has suffered from a series of strange symptoms since childhood, but was not diagnosed until the age of 41.
Although the condition itself is not considered fatal, the resulting attacks can be life-threatening as they often occur without warning and risk serious injury.
“I’ve suffered from migraines since I was a teenager,” Ms Rolstone said.
‘Every time I cough I get a very piercing pain in my head; covering the back of my skull.
‘It may only last thirty seconds, but it’s enough to make me clutch my head. I can’t even shout or raise my voice without getting a headache.
These were complaints that I knew were there, but I thought they were normal.’
After collapsing from shock three years ago, Ms Rolstone said she had to ‘piece together’ what happened that night.
“No one actually saw me collapse,” she said. ‘My other half was upstairs in bed and I was playing pool with my team.
‘I had been up all night making a cake for my friend’s son, and I felt tired.
Ms Rolstone recalled suffering from ‘blackouts’ as a teenager, which she dismissed – but doctors later told her she had suffered seizures.
Chiari malformations affect approximately one in 1,000 people and are often not discovered until adulthood.
‘I locked my back door, went into the living room and started feeling like I’d never felt before.
“I was very spread out; as if everything was moving in slow motion. It was so different from the kind of fogginess you feel from lack of sleep.
‘I walked up to my couch and it became more and more intense. Before I know it, I’m in the back of an ambulance.’
Ms Rolstone’s partner, 58, discovered her on the floor and called 999.
After she woke up, the doctors told her she had had a seizure. They sent her for an MRI scan, where they discovered she suffered from epilepsy, as well as a Chiari malformation.
‘I was told that Chiari malformations are rarely discovered in time it can be very dangerous,” she said.
The ordeal made her rethink the ‘blackouts’ she had suffered since her teenage years and realize that they were in fact a type of epileptic seizure known as ‘absence seizures’.
Mrs Rolstone has since been referred to the National Hospital for Neurology and Neurosurgery where she will be closely monitored for the rest of my life.
Today, her condition affects her life on a daily basis.
“I can’t work nine to five and my partner has become my full-time carer,” she said.
‘I have trouble watching TV because I get motion sickness when the camera zooms too fast.
‘I don’t know the full extent of the damage the condition has caused, but I’m glad we’ve caught it now.’
Although there is no way to cure Chiari’s deformities, Charlie has been advised to take painkillers for her migraines and limit scrolling time on her phone to help with motion sickness.
She is now taking 300 mg of lamotrigine for her epilepsy and has been seizure-free for 21 months.
Although traumatic, Ms Rolstone is grateful for the attack she suffered three years ago.
“That attack saved my life,” she said.