Franci van den Berg and Nina Pye live 13,500 kilometers apart: one at the southern tip of Africa, the other in London. According to Google Maps, it’s a 177-hour drive from one to the other. Yet Franci and Nina are connected, in a way; they both have spent years grappling with psychogenic non-epileptic seizures (PNES) and their physical, psychological, emotional and social consequences.
Franci was 13 and had just started high school in Stellenbosch, South Africa. She describes her first episodes as anxiety attacks. After two attacks in quick succession, Franci is hospitalized. She’s diagnosed with anxiety and prescribed medication. A few months later, her cousin is killed by a drunk driver. Franci wants to cry but finds that it’s impossible. “If I said I was drugged so much that I was like a zombie, it would be an understatement,” she said. “It all went downhill from there.”
At age 18, Nina has her first attack during a dance class at college in Suffolk, England. One minute she’s dancing; the next, she’s on the floor. “I’ve never fainted or had anything like that happen, so it was weird,” she recalled. “I thought, ‘Did I just lose my balance?’” After a few seconds, Nina stands up and carries on.
A week or two later, it happens again. Nina can’t move; she can hear everything, but it all feels far away. “What’s going on?” she thought. “I don’t feel like anything is seriously wrong with me.”
Six months later, Nina would try to kill herself.
The seizures go by many names: psychogenic non-epileptic seizures (PNES), non-epileptic attack disorder (NEAD), dissociative seizures, stress-induced seizures, pseudoseizures. Many of the names are confusing or imply that the seizures aren’t real.
Though PNES do not appear on EEG, they are very real and can affect all aspects of life. People stop going to school; they lose jobs and driving privileges. Their relationships, confidence and independence suffer. And recent data suggest that people with PNES have a mortality risk 2.5 times that of the general population, similar to the risk of people with drug-resistant epilepsy.
Timely and compassionate identification of these seizures, followed by structured and individualized treatment, is the ideal scenario. It’s also almost unheard of. As many as 75% of people with PNES are first diagnosed with epilepsy, and many carry that misdiagnosis for years. Others enter a cycle of emergency-room visits—where they can be shamed by hospital personnel and accused of “faking it”—coupled with increasing isolation.
Hearing hoofbeats, thinking zebra
Identifying PNES usually involves taking a thorough medical history and observing a seizure or seizures. A video EEG is considered the gold standard for distinguishing between an epileptic and a non-epileptic seizure; an absence of electrical seizure activity, coupled with clinical information, generally provides confirmation of PNES.
However, vEEG is not always used. In lower-income countries, the technology is difficult or impossible to come by. Even in high-income countries, vEEG is employed only about 80% of the time, according to an international survey conducted by the ILAE’s PNES Task Force. Its 2018 report confirms that identifying PNES is a challenge around the world.
in adults with PNES, between 25% and 75% report a history of childhood physical abuse or sexual abuse, including incest. Many have experienced other types of trauma, such as neglect, witnessing violence, a major accident or natural disaster, sudden loss of a loved one, medical or health issues, and others. In children and adolescents, physical and sexual abuse is less common (9% to 14%) but many have experienced other trauma, such as bullying, witnessing violence, or the death of a parent or close relative.
Franci had a stable childhood but pushed herself to succeed from a young age and always gave 150%. “I wasn’t one to back down from any fight or competition,” she said. A driven student and athlete, she’d finished her elementary years as student-body president at an elite school, where she felt a great deal of pressure to excel. After her cousin’s death, Franci’s seizures worsened. She missed many weeks of school and often was afraid to leave the house.
Nina, an only child, was homeschooled and close to her parents, though her father was abusive. He died in 2013 after a long illness. “I didn’t really find a way of dealing with it,” she said. In 2015, when Nina’s seizures started, her mother was ill with terminal cancer.
Giving the diagnosis
Discussing the possibility of PNES early on—before or during the workup phase—can make it easier for a patient to hear the diagnosis, noted a 2015 survey. The survey found that before a vEEG evaluation, only 10% of providers always mentioned PNES in relevant cases. During the diagnosis conversation, 89% of providers said they made it clear that having PNES was “good news” because PNES are not “real seizures.”
From the patient’s perspective, it’s not good news; many would rather hear that they have epilepsy. “Epilepsy seems easier,” said Lorna Myers, director of the PNES Program at Northeast Regional Epilepsy Group in New York. “If they have epilepsy, they just take a medication, rather than go through months or years of therapy. Also, the stigma of mental illness is very much alive, so [in their view] it’s easier to have a medical condition rather than a psychological one.”
Wording the seizures as “not real” (meaning they have no neurological correlate) or “psychogenic” is often upsetting and can cause resistance. “Many patients don’t understand how such a physical symptom could have a psychological origin,” said Markus Reuber, professor of clinical neurology at the University of Sheffield, United Kingdom. “I don’t think that all doctors who use inappropriate terms think of these seizures as faked,” he said. “However, the language they use can be understood in this way. This can be very damaging to patients.”
A thoughtful, supportive conversation about PNES can make a difference, according to a study from Norway. In people initially misdiagnosed with epilepsy, the study found that being taken seriously by the diagnosing physician was most important contributing factor in helping patients cope with PNES.
PNES are not a diagnosis in and of themselves; people are generally diagnosed with conversion disorder or functional neurological disorder (FND). A 2018 paper offers several suggestions:
- Do not try to “convince” a patient of the diagnosis. Describe the clinical signs that informed your decision and then give the patient space to reflect.
- Make it clear that an important first treatment step is the willingness to consider a diagnosis of conversion disorder (or FND).
- Encourage people to review educational material on websites—several are listed at the end of this article—and consider if their condition resembles what they read about.
About six months after Franci’s attacks started, her family took her to a neurologist; they were concerned she might have epilepsy. Her PNES diagnosis was not welcome news. “I hoped it was epilepsy so I could get medication and go on with my life,” she said. “I was very disappointed when I heard it was PNES. It took me a long time to accept it.”
Nina’s PNES were identified during a sleep study when a visiting neurologist happened to see one of them. “He said, ‘Oh, you have dissociative seizures,’ she remembers. “He said they happen to a lot of people who have PTSD, and I suffer from PTSD. I felt relieved, but also ashamed, because now I felt like it was all in my head. I judged myself; this was now a psychological thing.”
The treatment gap
Though neurologists may regularly diagnose patients with PNES, treatment usually comes from a psychiatrist, psychologist or counselor. Yet many neurologists’ offices do not have referral channels to get people with PNES set up with treatment.
“A neurologist may tell the patient they need therapy and leave it at that,” said Myers. “That sets the patient up for failure. Your general practitioner doesn’t tell you that you have cancer and then make you find an oncologist.”
Patients who seek treatment on their own may discover that some psychologists’ offices aren’t welcoming. “Patients hear responses like, ‘We don’t know what PNES is’ or ‘That sounds like a neurological condition – we don’t treat that’,” said Myers.
”There’s a sense of helplessness in the medical community because we’ve got the equipment to make a diagnosis but no referral system to help patients,” said W. Curt LaFrance, Jr., Director of Neuropsychiatry and Behavioral Neurology at Rhode Island Hospital and Professor of Psychiatry and Neurology at Alpert Medical School, Brown University. LaFrance noted that historically, neurology and psychiatry were practiced together; the fairly recent distinctions between the two specialties can fragment care.
It took Franci two years to find someone she clicked with. One psychiatrist was too intent on medicating her. Another focused on the death of her cousin, without seeing the bigger picture. Franci kept going to appointments, though little progress was being made. In hindsight, she wishes they had spoken up sooner. “If doctors really want to help, they have to be able to tell a patient, ‘Listen, I think you should see someone else. I don’t think we have the right relationship’,” she said. “I didn’t know any different—I was desperate for help, so I went along.”
At first, Nina Pye’s diagnosis led nowhere. Every antidepressant had crippling side effects. She was offered no counseling and no support. Her college forced her out, claiming it could not handle her condition. Then her relationship with her mother eroded further, leaving Nina without a place to live.
“I had no money, couldn’t work, couldn’t go to college,” said Nina. “I felt like this was my life sentence – this strange, mysterious condition that just happened, and there was no cure.”
After Nina attempted suicide three times in one month, extended family brought her to live with them in London. There, doctors took her seriously, and Nina began to see some hope.
Stigma and shame
People with PNES are caught in a double stigma: The stigma of having seizures, melded with the stigma of having a mental health condition. Many health care professionals aren’t familiar with PNES, and public understanding is even poorer.
The hardest challenge for me was not getting over PNES — it was the people,” Franci said. “People thought I was faking it or crazy. One mom spread rumors that I was in a mental institution because I just wanted attention. You have to fight that, and then you are working to get over PNES and live a normal life. I lost a lot of friends in the process … and my parents lost friends.”
For many months, Nina couldn’t concentrate on what her seizures meant or how to get better “because I was so busy fighting to prove they were real,” she said. She also had no one to talk to; even people who were initially compassionate would eventually reach a breaking point. “There would be a sympathy period of ‘Oh no! You have seizures’, and then eventually they’d be like, ‘Can’t you just stop now?’” She recalled. “It’s as if there are only a certain number of seizures you can have before people tell you it’s enough.”
“I’m very grateful for PNES”
PNES is an indicator, like a warning light on a car dashboard. You can’t just turn the light off and expect everything to be fine; you have to get under the hood and find out what’s happening. Effective treatment can take months or longer, and while one aim is seizure freedom, the larger goal is to learn how to manage emotions and handle stress on a daily basis. This improves quality of life in many areas; the hope is that it also reduces or eliminates seizures.
Some patients are told that PNES is difficult to treat successfully; research says otherwise. Myers said that cognitive behavioral therapy, prolonged exposure therapy, and mindfulness-based treatments all appear to have good outcomes. A recent meta-analysis found that 82% of people with PNES who completed psychological treatment experienced at least a 50% reduction in seizures.
LaFrance, a neurologist and psychiatrist, led one of the few pilot randomized clinical trials on therapeutic options for PNES. The results, published in 2014, showed that people who received LaFrance’s form of CBT had about 50% fewer seizures, as well as significant improvements in anxiety, depression and quality of life. People who received standard medical care did not improve on any outcome. LaFrance noted that two-thirds of study participants had previously had some psychotherapy before enrolling, but their seizures had persisted; this is sometimes seen with patients receiving supportive therapy or treatment with therapists not familiar with PNES or conversion disorder.
LaFrance trains both mental health professionals and neurologists to provide a tailored CBT intervention, which includes the use of a workbook called Taking Control of Your Seizures. Those who use this method—for PNES as well as for epilepsy—say it has helped them know and understand their patients better. He is now conducting a clinical trial that uses functional MRI to see how the CBT intervention changes the brain in people with PNES and those with epilepsy.
“It’s an exciting field,” said LaFrance. “We can make a huge difference in patients’ lives. People who’ve invested time and effort in the intervention have given us a lot of positive feedback. Some say, ‘All of my seizures didn’t go away, but I can still live a life – I don’t have to fear the next seizure.’”
It’s been five years since Franci van den Berg’s first episode. She sees her psychologist every two months and hasn’t had a seizure in nearly a year. Her career goals have changed, as has the way she sees herself—and she is no longer brokenhearted about having PNES.
“The best way to describe my journey is that I was thrown in the middle of the sea and I needed to swim,” Franci said. “And I had help, but…you learn so much about yourself. I think I know more about myself at 19 than some people do who are 40 or 50 years old. So in that way, I’m very grateful for PNES. I wouldn’t change anything about these past six years.”
Nina Pye is four years removed from that first attack on the dance floor. Her mother has died; Nina managed the aftermath, including the sale of her childhood home. She became a certified cricket coach and joined a dance band, which traveled for shows and auditioned for The X Factor. “I gained so much confidence and felt like the band was my home and family,” she said. Though she’s taking a break from it to focus on her health and education, she hopes to return one day.
Nina received six weeks of CBT as initial treatment, and now sees a counselor who practices hypnotherapy. She has about one seizure a week. “I hope to build up to the point where I can go many months without one, but I think that’s going to take some time,” Nina said. “It’s been quite a battle to understand my seizures, understand why they’re here, accept them and kind of learn to live with them.”
Back in school at a college that is accepting of her seizures, Nina is taking challenging coursework and aims to attend medical school. She hopes, perhaps, to become the kind of physician that she wished she had from the very beginning.
“I think the most successful doctors are the ones who are in touch with their humanity,” Nina said. “You have to face people on their worst day. They’re having the worst day of their life and they’re under your care. It doesn’t take much to show a little understanding.”