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Her Seizures Looked Like Epilepsy, But Her Brain Looked Fine

Feb 1, 2018
Originally published on February 2, 2018 7:27 am

When Sarah Jay had her first seizure, she was in her mid-20s and working a high-stress job at a call center in Springfield, Mo.

"I was going to go on break," she says. "I was heading towards the bathroom and then I fell and passed out."

An ambulance took Jay 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 that kept happening once or twice a week.

"So I was put on short-term disability for my work to try to figure out what was going on," says Jay, who's now 29.

The most likely cause for her seizures was abnormal electrical activity in her brain. In other words, epilepsy.

But Jay's doctors wanted to be sure. In May 2013, they admitted her to a hospital epilepsy center, put electrodes on her scalp and began watching her brain activity.

An epileptic seizure looks a bit like an electrical storm in the brain. Neurons begin to fire uncontrollably, which can cause patients to lose consciousness or have muscle spasms.

But during Jay's seizures, her brain activity appeared completely normal.

"It was kind of surreal," she says. "This woman, she sat me down and she was like, 'OK, you do not have epilepsy.' And I'm like, 'OK, so what's going on?' "

The woman told Jay her seizures were the result of a psychological disorder called psychogenic non-epileptic seizures.

PNES is a surprisingly common disorder, says John Stern, who directs the epilepsy clinical program at the University of California, Los Angeles. About 1 in 3 people who come to UCLA for uncontrolled seizures don't have epilepsy. Usually, they have PNES, he says.

That's not something most patients want to hear, Stern says, especially if they've already been diagnosed with epilepsy somewhere else.

"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 never heard of," he says. "That's disarming. That's confusing."

Sometimes patients simply reject the new diagnosis and that response is unfortunate, Stern says, because epilepsy drugs don't help people with PNES. In fact, as a neurologist, he has no way to treat these patients.

So he typically refers them to his colleague, Patricia Walshaw, a psychologist who directs the neurobehavioral epilepsy program at UCLA.

"They may feel lost or confused. They may be angry. There's denial that arises," Walshaw says. "That's where I pick up."

Many people with PNES face stigma and skepticism about their condition, even from their friends and family, so they need support.

"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," Walshaw says. "But that couldn't really be farther from the truth."

PNES patients are not faking their seizures. The events look and feel a lot like epileptic seizures and can be just as debilitating. For example, like people with uncontrolled epilepsy, people with PNES can't get a driver's license.

What Jay and most PNES patients want to know is: If an electrical problem isn't causing their seizures, what is?

The answer is complicated. PNES is more common among young women and people with depression or some other mental illness. And often, Walshaw says, the seizures are a reaction to some sort of traumatic experience like abuse.

"And you need to have a treatment that really focuses on trauma," Walshaw says.

Sometimes the seizures stop once patients learn they don't have epilepsy. But usually, Walshaw says, PNES requires years of therapy and mental health treatment.

Jay says she doesn't have a history of abuse but has been hospitalized for severe depression. So she is now receiving treatment for both PNES and depression.

It's helping, but her seizures do still happen and it can be difficult to explain to people that she does not have epilepsy.

"Going to the ER can be kind of hurtful because they don't know what you're talking about all the time." Jay says sometimes doctors and nurses think she's faking it.

But she's lucky in many ways. She says that her family and friends have been very supportive and she's found a community of other PNES patients through online support groups.

Jay is trying to give back by helping others who have the disorder. She's even made some videos about PNES, including one on YouTube.

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

MARY LOUISE KELLY, HOST:

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. Transcript provided by NPR, Copyright NPR.