Charlie Rolstone, a jewelry business owner from Hertfordshire, England, spent years dismissing symptoms like motion sickness and migraines as personal quirks. She never imagined these seemingly minor issues were actually indicative of a rare brain disorder called Chiari malformation.
Rolstone recounted her experience to South West News Service, as reported by The Daily Mail. She described experiencing piercing headaches when coughing, lasting about 30 seconds, and an inability to raise her voice without triggering a headache. “These were symptoms I knew to be there, but I thought they were normal,” she stated.
However, in September 2021, Rolstone’s condition took a dramatic turn. She collapsed at home after a sleepless night baking a cake. She described feeling disoriented, as if everything was in slow motion, a sensation far different from typical fatigue. “I walked as far as my sofa and it intensified. Next thing I know, I’m in the back of an ambulance,” she recalled.
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Rolstone’s partner found her unconscious and called for help. Upon regaining consciousness, doctors informed her she’d had a seizure. Subsequent tests, including an MRI, revealed the underlying cause: epilepsy and Chiari malformation.
According to the Mayo Clinic, Chiari malformation is a rare condition where brain tissue extends into the spinal canal due to a misshapen or undersized skull. This puts pressure on the brain, leading to a range of symptoms including headaches, dizziness, vertigo, muscle weakness, balance problems, neck pain, swallowing difficulties, breathing issues, insomnia, seizures, and slow heart rate. The Cleveland Clinic notes that severe cases or specific types of Chiari malformation can be fatal.
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Rolstone now receives ongoing monitoring at the National Hospital for Neurology and Neurosurgery. Her life has been significantly altered by the diagnosis. She’s unable to work a traditional job and relies on her partner for full-time care. Even watching television can trigger motion sickness if the camera movements are too rapid.
While there’s no cure for Chiari malformation, symptom management is possible. Rolstone manages her migraines with painkillers, minimizes screen time to combat motion sickness, and takes epilepsy medication that has kept her seizure-free for 21 months.
Despite the challenges, Rolstone expresses gratitude for the diagnosis, acknowledging that the seizure that led to it ultimately saved her life. “I don’t know the full extent of the damage the condition has done, but I’m glad we’ve caught it now,” she affirmed.
