A British woman says the “subtle” symptoms she had experienced throughout her life were actually signs of a potentially dangerous brain disorder.
Charlie Rolstone, 44, battled migraines and motion sickness whenever she “used her phone too much”, but after an incident in which she was rushed to hospital, she discovered the phone wasn’t actually to blame – an anomaly in her skull. it 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 being pushed down into the base of the skull and spinal canal. It is usually due to a problem with the size of the skull and without enough space, the brain grows down and blocks the flow of cerebrospinal fluid.
Chiari can be fatal and Charlie, who was diagnosed at 41, will have to keep an eye on her symptoms for the rest of her life.
“I’ve had it all my life but my symptoms have only gotten worse as I’ve gotten older,” said Charlie, who is from Berkhamsted, Hertfordshire.
Throughout her teenage years, Charlie suffered from migraines, motion sickness, and “blackouts,” which she has since realized were absence seizures.
“I have suffered from migraines since I was a teenager. Every time I cough, I also get a very sharp 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 a headache. These were symptoms that I knew were there, but thought were normal.”
Thinking she would grow out of the symptoms, she didn’t talk to a doctor until three decades later.
But on September 20, 2021, Charlie collapsed after returning from a round of pool at her local pub.
“I had to make up the incident after I woke up because no one saw me fall,” she recalls. “My other half was upstairs in bed and I was playing pool with my team.
“I had been up all night before, making a cake for my friend’s son, and I was feeling tired. I closed the back door, walked into the living room and started to feel like I had never felt before.
“I was very separated, like everything was moving in slow motion. It was very different from the kind of grogginess you feel from lack of sleep.
“I walked up to the sofa and it intensified. The next thing I know, I’m in the back of an ambulance.”
Charlie’s partner, 58, discovered her on the floor and called the emergency services and she was rushed to Watford General Hospital.
After she woke up, doctors realized she had had a seizure due to muscle aches, a sore tongue and a bump on her head from falling on the couch.
They sent her for an MRI, where they discovered she was suffering from epilepsy as well as her Chiari malformation.
“By the time I had a major seizure, I had an MRI on my brain, the doctor called me 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 detected in time. I’ve been told it can be really dangerous.
“I have been referred to the National Hospital for Neurology and Neurosurgery and I have to keep them informed of my symptoms for the rest of my life.
“Chiari is starting to affect my daily life. I can’t work nine to five and my partner has become my full time carer.
“Even to the point where I have trouble watching TV – I get motion sickness if the camera zooms in 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.” That seizure saved my life – it discovered my Chiari malformation.
While there is no way to cure Chiari malformations, Charlie has been advised to take pain medication for her migraines and limit the time she spends on her phone to help with the motion sickness.
She now takes 300 mg of lamotrigine for her epilepsy and has been seizure free for 21 months.
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