A British women says the “subtle” symptoms she’d experienced her whole life were actually signs of a potentially dangerous brain disorder.
Charlie Rolstone, 44, battled migraines and motion sickness whenever she was “using her phone too much,” but after an incident in which she rushed to the hospital, she discovered that the phone wasn’t really to blame — an abnormality in her skull was.
After undergoing an MRI, she was diagnosed with epilepsy and a Chiari malformation.
The condition, which can be genetic, affects one in 1,000 people and involves the brain pushing down into the base of the skull and the spinal canal. It’s typically due to a an issue with the size of the skull, and without enough room, the brain grows downward and blocks the flow of cerebrospinal fluid.
Chiari can be fatal, and Charlie, who was diagnosed at age 41, will have to keep an eye on her symptoms for the rest of her life.
“I’ve had it my whole life, but my symptoms have only been getting worse as I’ve got older,” Charlie, who is from Berkhamsted, Hertfordshire, said.
Throughout her teenage years, Charlie suffered from migraines, motion sickness and “blackouts,” which she has since come to realize were absence seizures.
“I’ve suffered with migraines since I was a teen. Whenever I cough, I also 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.”
Thinking she’d grow out of the symptoms, she didn’t speak to a doctor until three decades later.
But on September 20, 2021, Charlie collapsed after coming back from a pool tournament at her local pub.
“I had to piece the incident together after I woke up, because no-one saw me actually collapse,” she recalled. “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. 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.”
Charlie’s partner, 58, discovered her on the floor and called emergency services, and she was soon rushed to Watford General Hospital.
After she woke up, doctors figured out she’d had a seizure due to her muscle aches, sore tongue and lump on her head from falling against the sofa.
They sent her for an MRI, where they discovered she was suffering from epilepsy, as well as her Chiari malformation.
“It wasn’t until I had a major fit that I had an MRI on my brain, My doctor called me up and said he found four things wrong with me,” she said, adding that they also told her she had brain lesions and an aneurysm.
“I was told that Chiari malformations are rarely discovered in time. I’ve been told it can be really dangerous.
“I’ve been referred to the National Hospital for Neurology and Neurosurgery, and I have to keep them informed about my symptoms for the rest of my life.
“Chiari has started to affect my every day life. I can’t work a nine-to-five, and my partner has become my full-time carer.
“Even to the point where I struggle to watch TV — 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. That seizure saved my life — it revealed my Chiari malformation.
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 of lamotrigine for her epilepsy and has been seizure-free for 21 months.
