Epigraph Vol. 23 Issue 2, Spring 2021
By any other name: What to call psychogenic non-epileptic seizures?
They’re called seizures, attacks, events, fits—but they’re not epilepsy. Known by various names, including dissociative seizures, psychogenic non-epileptic seizures (PNES), and functional seizures, they can be tricky to identify; as many as 75% of people are first told they have epilepsy, and it can take years to rectify the misdiagnosis.
Like epilepsy, PNES interferes with education, employment, and independence. Recent data suggest that people with PNES have a mortality risk 2.5 times that of the general population—similar to the elevated risk of people with drug-resistant epilepsy.
The name of these seizures can make a difference in how people are treated—by health care professionals as well as friends, family, and members of the public. Even the name “seizure” has implications that are different from a word like “attack” or “event.”
To provide a platform for discussing the issues and options around a better name, a series of meetings were organized by the American Epilepsy Society’s PNES special interest group, the Functional Neurological Disorders Society (FNDS), and members of ILAE.
PNES SIG co-chairs Julia Doss, a pediatric psychologist with Minnesota Epilepsy Group, USA, and Barbara Dworetzky, a neurologist and epileptologist at Harvard Medical School, USA, hosted the sessions, which included background information, patient input, expert opinions, discussions, and videos.
The meetings brought together more than 150 participants to discuss what’s important in a name and how the name of a condition affects treatment options, public acceptance, professional ownership, stigma, and reimbursement.
“These meetings were an effort to bring all points of view together without debating,” said Dworetzky. “The idea was to discuss what is important about the name and try to find one name that may not be agreed upon by everyone, but works for most, so we can move things forward.”
This article uses the terms “psychogenic non-epileptic seizures,” “PNES,” and “functional seizures” interchangeably.
History of terms
Surveys have found that patients prefer certain terms to others, said Benjamin Tolchin, a neurologist at Yale University Medical School, USA. Terms such as “pseudoseizure” and “hysterical seizure” are seen as offensive, though “pseudoseizures” is still often used by medical professionals.
Though the term PNES is descriptive, it has shortcomings. “Psychogenic” describes the movements as psychological in origin because they have no organic cause, such as a brain malformation or tumor. However, patients and their families can interpret “psychogenic” negatively. “The first thing they hear is ‘psycho,’” noted a webinar participant.
The term “non-epileptic” distinguishes PNES from epileptic seizures, which have correlates on EEG. Some participants, as well as published research, has noted that “non-epileptic” describes what the symptoms are not, rather than what they are.
The ideal name
Dworetzky presented a list of criteria for the ideal name:
- Be acceptable and not offensive, so that patients want to seek and continue treatment
- Explain the disorder without a commitment to its etiology
- Work across languages and cultures
- Work across clinicians, and across different clinical presentations
- Have a universally agreed upon single term
- Work across classification schemes
To mention psychology – or not
The term PNES indicates there’s a psychological cause behind the seizures. However, psychological factors are not included in the DSM-V criteria for the official diagnosis—a subtype of conversion disorder, now also called functional neurological symptom disorder (FNSD) or functional neurological disorder (FND). Psychological factors (such as a history of abuse or trauma) also have not been shown to aid in diagnosis or to predict outcome.
Cognitive behavioral therapy (CBT) has the strongest evidence base for treating PNES. Whether to include any mention of psychological etiology in the name was a hot topic of discussion. Some participants said that including it could pave the way to better acceptance of treatment. Others maintained that regardless of the name, some patients will resist the idea that their physical symptoms can be successfully treated with talk therapy.
Gaston Baslet, Harvard Medical School, USA, is a psychiatrist who treats people with PNES. “I understand the difficulty of engaging patients in treatment,” he said. “But the best treatment so far for this disorder is skills-based psychotherapy or CBT. So wording that recognizes the need to address psychological factors could help patients get one step closer to treatment.”
On the other hand, he noted, “Neurologists should not use the word ‘psychogenic’ to distance themselves from the patient because they don’t think it’s their job to manage this disorder.”
Jon Stone, University of Edinburgh, UK, is a neurologist with an interest in functional symptoms. Stone noted that most conditions do not include etiology in the name. “A headache is a headache,” he said. “If someone has a headache from stress, that’s a condition with psychological underpinnings. We don’t call it psychogenic headache.”
Nicole Roberts, Arizona State University, USA, is a psychologist researching the cultural and biological impacts on emotional responses. She said that biology should inform the name. “We know there are disruptions in neural network connectivity and parasympathetic arousal,” said Roberts. “We should consider names that reflect what we think is involved. If we get it right, it could legitimize the condition, similar to the naming of post-traumatic stress disorder: Establishing that it’s a legitimate condition with biological underpinnings and effective treatment options.”
The word “seizure”
On the one hand, using the word “seizure” could be confusing—to patients as well as some health care personnel. On the other hand, keeping the word in the condition helps to loop in neurologists, who are an important part of follow-up care (particularly in the estimated 10% of people who have both epilepsy and PNES).
Tolchin said that the guidelines for diagnosis and management of PNES were recently discussed in an email group for epileptologists, run by the American Academy of Neurology. Many in the group were concerned that using the term “seizure” could confuse patients and clinicians.
Maria Oto is a neuropsychiatrist with the Scottish Epilepsy Centre, UK. She avoids the term “seizure” to help distinguish the condition from epilepsy. “Invariably, the people I see have been previously told that they have epilepsy,” said Oto. “And it’s difficult to explain that a seizure is not always epilepsy.”
A name including “seizure” also could lead to unnecessary treatment, said Mahinda Yogarajah, a neurologist at St. George’s Hospital, University of London, UK. “Even with modifiers like ‘functional’ or ‘non-epileptic,’ emergency room physicians equate a seizure with the need for intravenous benzodiazepines and other interventions,” he said.
However, the term “non-epileptic” should ideally protect people from inappropriate treatment in the emergency department, said Aileen McGonigal, an epileptologist at Aix Marseille University, France. “The term is reinforced by the use of EEG as a common means of investigating these attacks,” she said.
Suzette LaRoche, a neurophysiologist at Emory University School of Medicine, USA, suggested that using the word “seizure” may help neurologists stay involved with these patients; in many cases, neurologists refer PNES patients to a psychiatrist or psychologist and don’t follow up. LaRoche works in a rural clinic that has changed its name from an “epilepsy clinic” to a “seizure clinic” and sees both PNES and epilepsy patients. Changing the clinic’s name has reduced stigma, she said.
Participants suggested using the word “attack” or “event,” though there wasn’t widespread agreement.
“The label is partly about how patients convey to other people what is wrong,” said Bridget Mildon, president and founder of FND Hope International, a nonprofit organization promoting awareness and support for people affected by FND.“People ask, ‘So what did they find out?’ and then someone says ‘Well, I’m having events’?” asked Mildon. “What’s that mean?”
Jeffrey Buchhalter, a pediatric epileptologist at St. Joseph’s Hospital in Arizona, USA, uses “event” as a neutral word to start conversation. “What’s important is what comes next,” he said. By avoiding the word “seizure,” he said, “You draw a clear line that the person doesn’t need anti-seizure medication or invasive procedures to pursue treatment.”
Jay Salpekar, a pediatric neuropsychiatrist at Johns Hopkins’ Kennedy Krieger Institute, USA, agreed. “My patients are comfortable using the word ‘episode’,” he said. “’Seizure’ does not have to be a part of the term.”
Participants agreed that framing and explaining the condition was crucial. Kasia Koslowska, a pediatric psychiatrist at the University of Sydney Medical School, Australia, said that she explains PNES to families as a dysregulation of neural networks, caused by some type of stress (psychological, physical, or both). The stress causes motor programs in the prefrontal cortext to “go offline” and express themselves involuntarily.
“The language used with patients and their families can encourage either engagement or disengagement, hope or helplessness,” she said.
Doss said that regardless of how the condition is explained, words such as “psychogenic” have negative connotations. “That’s not to say we should never use the term ‘psychogenic’ but we need to be cognizant of how people receive it,” she said.
“The explanation may be more important than the name, but the name is important,” said Baslet. “The person hearing the name has to be open to hearing the explanation. If they don’t like the name or have associations with it, it can invalidate the entire process.”
“What we say and what patients hear may be two different things sometimes, and we can’t control how they interpret what we say,” said W. Curt LaFrance, a neurologist and psychiatrist at Brown University, USA. “However, you can say hard things to patients if they know you care about them. If we remove ourselves from the specifics of the terminology and just let people know ‘I am hearing you, I see you, I understand that you are having struggles and are suffering’—If they hear that and see that and we practice with compassion, I don’t know that the term matters so much.
Nancy Volkers, ILAE Communications Manager
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