Her seizures look like epilepsy, but her brain looks good.
When Sarah jay first had a seizure, she was in her 20s, working in a call center in springfield, Moscow.
She said, “I’m going to take a break. “I was walking to the bathroom and I fell and fainted.”
An ambulance took jay to the hospital, but the doctors there couldn’t find any mistakes. Jay thinks it’s a one-time thing. A week later, she had another seizure. This happens once or twice a week.
“So my job is to try to figure out what’s going on because of my short-term disability at work,” said jay, now 29.
The most likely cause of her seizures was abnormal electrical activity in her brain. In other words, epilepsy.
But jay’s doctor wanted to make sure. In May 2013, they took her to the hospital’s epilepsy center, placed electrodes on her scalp and began to pay attention to her brain activity.
But during Jay’s seizure, her brain activity seemed completely normal.
“It’s a bit surreal,” she said. “This woman, she told me to sit down, she’s like ‘no, you don’t have epilepsy’. I thought, ‘ok, what’s going on? ”
The woman told Jay that her seizure was the result of a psychological disorder called psychogenic non-epileptic seizures.
John Stern, who directs the UCLA epilepsy clinic program, says PNES is a surprisingly common disease. About a third of people come to UCLA for uncontrolled seizures, without epilepsy. ‘usually they have PNES,’ he says.
‘it’s not something that most patients want to hear, especially if they have been diagnosed elsewhere,’ Mr. Stern said.
He said: “it has been told that all these doctors are wrong and there is a situation I have never heard of.” “It’s disarming, it’s chaotic.
Sometimes, Stern says, patients will reject new diagnoses and react badly, because epilepsy drugs can’t help patients with PNES. In fact, as a neurologist, he was unable to treat these patients.
So he usually introduces them to his colleague Patricia Walshaw, a psychologist who directs the neurobehavioral epilepsy program at the university of California, Los Angeles.
Many PNES patients have a stigma and suspicion about their situation, even from their friends and family, so they need support.
“The common misconception is that seizures are all in the person’s mind, or they are just supplemental, or nothing is wrong,” says Walshaw. “But that’s not the case.”
PNES patients did not counterfeit their seizures. These things look and feel like seizures and can make people weak. For example, patients with epilepsy, such as uncontrolled seizures, can’t get a driver’s license.
What jay and most of the PNES patients want to know is: if the electrical problem doesn’t cause their seizure, what is it?
The answer is complicated. PNES are more common among young women and people with depression or other mental illnesses. Walshaw says seizures are often a response to traumatic experiences, such as abuse.
“You need a treatment that really focuses on trauma,” says Walshaw.
Once patients learn that they have no epilepsy, sometimes seizures stop. But, says Walshaw, PNES usually requires years of treatment and mental health care.
Jay said she had no history of abuse but was hospitalized with severe depression. So she is now receiving treatment for PNES and depression.
This is helpful, but her seizures are still occurring, and it may be difficult to explain to people that she has no epilepsy.
“It hurts to go to the emergency room because they don’t know what you’re talking about.” Jay said that sometimes doctors and nurses thought she was pretending.
But she was lucky in many ways. She said her family and friends were very supportive and found a community of other PNES patients through online support groups.
Jay is trying to pay off by helping people with disabilities. She even made some video for PNES, including one on YouTube.