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More than 3 million people in the U.S. have been diagnosed with epilepsy. But for many of those patients, there's something else going on. Their seizures are being caused by a different disorder, one that few have heard of. NPR's Jon Hamilton reports.
JON HAMILTON, BYLINE: Sarah Jay was in her mid-20s and working at a call center in Missouri when she had her first seizure.
SARAH JAY: I just got off the phone. I was going to go on break. So I was heading towards the bathroom. And then I fell and, like, passed out.
HAMILTON: An ambulance took her to the hospital, but doctors there couldn't find anything wrong. Jay figured it was a one-time thing. Then a week later, she had another seizure. And she says they kept happening.
JAY: It was, like, once or twice a week. And so I was put on short-term disability for my work to try to, like, figure out what was going on.
HAMILTON: The most likely cause was abnormal electrical activity in her brain - in other words, epilepsy. But Jay's doctors wanted to be sure. So in May of 2013, they admitted her to an epilepsy center, put electrodes on her scalp and began watching her brain activity.
JAY: I had a couple seizures, and they were able to see that it wasn't an actual, like, epileptic seizure.
HAMILTON: An epileptic seizure is a bit like an electrical storm in the brain. Neurons begin firing uncontrollably, which can cause patients to lose consciousness or have muscle spasms. But Sarah Jay's brain activity was normal.
JAY: It was kind of surreal, you know? This woman - she sat me down. She was like, OK, you do not have epilepsy. And I'm like, oh, OK, so what's going on? And she talked about non-epileptic seizures.
HAMILTON: The woman told Jay that her seizures were from a psychological disorder. It's called psychogenic non-epileptic seizures, or PNES. John Stern, who directs the epilepsy clinical program at UCLA, says about 1 in 3 people they evaluate for uncontrolled seizures turns out to have PNES. He says that's not something most patients want to hear, especially if they've been previously diagnosed with epilepsy.
JOHN STERN: The person's being told that all the doctors who said this is epilepsy are wrong, and there's a condition now that I have which I've ever heard of. And that's disarming. That's confusing.
HAMILTON: And sometimes they simply reject the new diagnosis. Stern says that's what happened with a patient who had spent decades believing she had epilepsy.
STERN: That person found the idea that the diagnosis was not correct for so long to be so disorienting that she continues to receive treatment for epilepsy.
HAMILTON: Which is unfortunate because epilepsy drugs don't help people with PNES. A neurologist like Stern has no way to treat these patients, so he typically refers them to his colleague, Patricia Walshaw, a psychologist.
PATRICIA WALSHAW: They may feel lost or confused. They may be angry. There's denial that arises. That's where I pick up.
HAMILTON: Walshaw says people with PNES often face stigma and skepticism even from friends and family.
WALSHAW: The common misconception is that the seizures are all in the person's head or that they're just making it up or that nothing is wrong. But that couldn't really be farther from the truth.
HAMILTON: Walshaw says it's not like they're faking. The seizures look and feel a lot like epileptic seizures and can be just as debilitating. For example, people with PNES can't get a driver's license. But if an electrical problem isn't causing the seizures, what is? Walshaw says often it's a reaction to some sort of traumatic experience.
WALSHAW: Abuse, domestic violence - things like that are really related to this disorder. And you need to have a treatment that really focuses on trauma.
HAMILTON: Walshaw says sometimes the seizures stop once patients learn they don't have epilepsy. But usually PNES requires years of therapy not just for the seizures but for other mental health issues. Sarah Jay, for example, is being treated for both PNES and severe depression.
JAY: My seizures have definitely been less. They've - they're not happening quite as often.
HAMILTON: But they do still happen, and Jay says it can be difficult to explain to people that she does not have epilepsy.
JAY: Going to the ER can be kind of hurtful because they don't know what you're talking about all the time. And they think you're just faking it and stuff like that.
HAMILTON: Jay says her family and friends, though, are very supportive, and she's hoping to find a job that she can do even if she keeps having seizures. Jon Hamilton, NPR News.
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