Epigraph Vol. 21 Issue 2, Spring 2019
The long reach of trauma: Psychogenic seizures in middle age
Audrey Bart started having seizures at age 41. Here’s her story.
It’s just after Valentine’s Day, 2016. Audrey Bart is rushed to the emergency room for unexplained paralysis. Over the next week, she begins having seizures. The most common scenario might be a diagnosis of epilepsy, but that’s not what’s going on. Audrey is experiencing psychogenic non-epileptic seizures, or PNES.
Though as many as 75% of people with PNES are first misdiagnosed with epilepsy, that doesn’t happen to Audrey. It’s quickly determined that she has PNES and that her seizures are a symptom of conversion disorder. Audrey doesn’t recall anyone explaining conversion disorder to her — but what she learns about it clarifies her life and past struggles like nothing else has.
It explains why Audrey gets sick all the time — she left her job as a medical technologist because she’s been ill for so long. It explains why she was once diagnosed with bipolar disorder. It explains why she has spent many months exhausted and unable to make decisions, plagued by flashbacks to childhood trauma and anger toward her family for how she was treated. And it explains the seizures, which can be one manifestation of conversion disorder, or functional neurological disorder. In these disorders, emotions and repressed trauma morph into physical symptoms, such as weakness, paralysis, tremors, numbness, loss of vision or slurred or stuttering speech.
“I finally got clarity and scientific backing, albeit another label,” says Audrey, who lives in Cape Town, South Africa. “It meant I wasn’t crazy and wasn’t making things up.”
It’s estimated that 70% of people with PNES are young women. However, the seizures do surface in older women as well as men, and are often linked with trauma. One recent study of U.S. veterans found that those with PNES were more likely than those with epilepsy to have a mood disorder, anxiety disorder, or post-traumatic stress disorder.
Within a week of diagnosis, Audrey enters a 21-day residential mental health program that includes group and individual therapy, as well as coping skills lessons. She finds group therapy overwhelming, but receives additional one-on-one support from a psychologist.
At first, Audrey’s seizures get worse. “More seizures were triggered because more memories came up,” she says. “Just a smell, or the sight of somebody’s fingernails, would trigger an event.”
After the program ends, Audrey is referred to a specialist in eye movement desensitization response, or EMDR, a form of psychotherapy that combines recall of traumatic memories with bilateral sensory input (images, sounds or tapping). Though its mechanism isn’t clear, EMDR appears to help people process these memories. Many organizations, including the World Health Organization and the American Psychiatric Association, endorse EMDR for treating trauma.
“Most of 2016 is when my seizures were bad,” Audrey says. “Sometimes I would have seizures the entire day; sometimes once a day. There was no set pattern. From about mid-2017 onward, the seizures slowed tremendously. By September 2017 I could function for a month or two on my own. Then more things came up, and I went back to EMDR.”
Audrey also read widely, finding books and online videos from Peter Levine and Bessel van der Kolk about the mind-body connection and how trauma disrupts normal brain function. “I couldn’t put a lot of how I felt into words,” she says. “But then I would listen to these talks and think, ‘Oh, that’s exactly how I feel and what I’m going through.’”
As Audrey took steps to understand herself, she sometimes triggered seizures. But she pressed on. “I’m dealing more with relationships building, going out and dealing with people, understanding my emotions, and the anxiety associated with all of that,” she says. “I’ve learned that I have to go inside and listen to my gut to understand what I’m feeling and how I can help myself. Before, I wasn’t able to communicate how I was feeling and what was happening inside.”
Now, when Audrey has an occasional seizure, she can feel it coming; she lies down until it passes. The seizures feel different than they used to. “Before, I felt I was outside my body,” she says. “Now I feel like I’m in my body, but separate from the seizure.”
Treatment for PNES depends on each individual and the cause of the seizures. Audrey’s seizures stem from childhood abuse and neglect; someone else’s may be due to a buildup of everyday stresses, a bad car accident or a serious illness. “What we each need to learn as coping skills will be different,” Audrey says. “If you look at the cause of the PNES, not the PNES itself, I think you have a better chance at success.”
Subscribe to the ILAE Newsletter
To subscribe, please click on the button below.
Please send me information about ILAE activities and other
information of interest to the epilepsy community