A Hertfordshire woman spent most her life battling mysterious symptoms — only to discover, aged 41, that she was born with a rare and disabling brain condition.
Charlie Rolstone has long been plagued with ‘subtle’ health problems, including migraines and severe motion sickness triggered by watching television and looking down at her phone.
The jewellery business owner ‘ignored’ the symptoms during her teenage years, believing they were ‘quirks’ that she’d ‘grow out’ of.
However in September 2021, Ms Rolstone collapsed on her way home from the local pub, prompting her partner to rush her to hospital.
Doctors ran a plethora of tests and eventually discovered she had what’s known as a Chiari malformation — a condition whereby the lower part of the brain pushes down into the spinal canal, causing a host of problems.
Chiari malformations are mostly present at birth, and caused by DNA mutations that make the brain too large for the skull.
The condition is thought to affect around one in 1,000 people, with most cases detected in adulthood.
The excess pressure on the brain can result in a range of symptoms, including headaches, neck pain, dizziness, hearing loss, swallowing problems, nausea and seizures.
Charlie Rolstone has suffered a series of strange symptoms since childhood, but only got a diagnosis at the age of 41.
While the condition itself is not thought to be deadly, the resulting seizures can be life-threatening, as they often occur without warning, risking serious injury.
‘I’ve suffered with migraines since I was a teen,’ said Ms Rolstone.
‘Whenever I cough, I get a very piercing pain in my head; covering the back of my skull.
‘It only lasts for, maybe, 30 seconds, but it’s enough to make me grab my head. I can’t even shout, or raise my voice without getting a headache.
These were symptoms I knew to be there, but I thought they were normal.’
Following her shock collapse three years a go, Ms Rolstone said she had to ‘piece together’ what happened that evening.
‘No one saw me actually collapse,’ she said. ‘My other half was upstairs in bed, and I’d been out playing pool with my team.
‘I’d been up the entire night before, making a cake for my friend’s son, and I was feeling tired.
Ms Rolstone recalled suffering ‘blackouts’ as a teenager, which she dismissed – but doctors later informed her she’d been experiencing seizures.
Chiari malformations affect around one in 1000 people and they are often only detected in adulthood.
‘I locked my back door, went into the living room, and started feeling a way I’ve never felt before.
‘I was very spaced out; like everything was moving in slow-motion. It was so different from the kind of fuzziness you feel from a lack of sleep.
‘I walked as far as my sofa and it intensified. Next thing I know, I’m in the back of an ambulance.’
Ms Rolstone’s partner, 58, discovered her on the floor and called 999.
After waking up, doctors informed her she’d had a seizure. They sent her for an MRI can, where they discovered she was suffering from epilepsy, as well as a Chiari malformation.
‘I was told that Chiari malformations are rarely discovered in time and it can be really dangerous,’ she said.
The ordeal made her reassess ‘blackouts’ she’d struggled with since a teenager, and come to realise they they were in fact a type of epileptic fit known as absence seizures.
Ms 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 a nine-to-five, and my partner has become my full-time carer,’ she said.
‘I struggle to watch TV because I get motion sickness symptoms if the camera zooms too quickly.
‘I don’t know the full extent of the damage the condition has done, but I’m glad we’ve caught it now.’
While there isn’t a way to cure Chiari malformations, Charlie has been advised to take painkillers for her migraines and limit scrolling time on her phone to help with motion sickness.
She now takes 300mg lamotrigine for her epilepsy, and has been seizure-free for 21 months.
Although traumatic, Ms Rolstone is grateful for the seizure she suffered three years a go.
‘That seizure saved my life,’ she said.
