Epigraph Vol. 23 Issue 2, Spring 2021
By any other name: Improving access to treatment and reducing stigma in psychogenic non-epileptic seizures
By Nancy Volkers, ILAE communications officer
Like epilepsy, psychogenic non-epileptic seizures (PNES) interfere with education, employment, and independence. As one manifestation of a functional neurological disorder, PNES may be associated with heightened connectivity between areas of the brain involved in emotional processing and motor function.
However, as of yet, no test or imaging modality exists for PNES, and the only evidence-based treatments are psychological ones, such as cognitive behavioral therapy. This means that people with PNES also face the stigma of having a mental health condition.
Addressing all aspects of such stigma—from health care professionals, from family members and friends, from the public, and even from the patients themselves—is a crucial part of improving care and access to care. As well, bringing PNES into both neurologists’ and psychiatrists’ offices is important in helping the condition find a home, as often people with PNES feel shut out by health care professionals who don’t feel able to help them.
Could changing the name of these seizures help improve access to treatment and reduce stigma? The American Epilepsy Society’s PNES special interest group, the Functional Neurological Disorders Society (FNDS), and members of ILAE organized a series of meetings to discuss the issue.
“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,” said Barbara Dworetzky, a neurologist and epileptologist at Harvard Medical School, USA. Dworetzky co-hosted the meetings with Julia Doss, a pediatric psychologist with Minnesota Epilepsy Group, USA.
This article uses various terms for these seizures.
The patient perspective: Names matter… sometimes
Surveys have found that patients prefer certain terms over others, said Benjamin Tolchin, a neurologist at Yale University, USA. Surveys show that people prefer “non-epileptic attack,” “non-epileptic seizure,” “functional seizure,” and “dissociative seizure” over “psychogenic non-epileptic seizure” or “psychogenic seizure.”
Least preferred are “pseudoseizure” and “hysterical seizure,” which are seen as offensive. Though to a neurologist, a “pseudoseizure” refers to a seizure that has no correlate on an EEG, the everyday connotation of “pseudo” – meaning fake or false – makes it a less-than-savory choice.
Identifying PNES and explaining them can sometimes reduce seizure burden. One patient described a six-month period of uncertainty, during which no health professional was able to explain their seizures. They tell their story in a recent article.
“Six months after my first seizure, I was officially diagnosed with dissociative seizures,” the patient said. “The reassurance of a diagnosis itself, along with further research into the condition, was enough alone to cause a noticeable decrease in the severity of my seizures.”
One of the patient’s physicians drew a diagram explaining how stress can build to cause seizures. Over two months, the patient used a cognitive behavioral therapy diary to identify triggers.
“I surprised myself with the diversity and number of my triggers on reviewing my diary . . . A greater understanding of my condition gained through psychoeducation, and the use of grounding, distancing and distracting techniques, have all been instrumental in my recovery.”
Strong stigma can hinder treatment
Some terms may be less offensive only because patients do not understand their meaning.
A 2016 study of 185 people with unexplained neurological symptoms replicated other findings that the term “functional” was less offensive than other terms, such as “conversion disorder.” However, the study also found that once less-understood terms were explained, they became more offensive.
In a relatively small, qualitative study of physician-patient communication about PNES, physicians used objective, non-controversial terms such as “attack” or “blackout,” avoiding the words “seizure,” “pseudoseizure” and any term that would imply psychological issues.
However, the physicians ultimately acknowledged that psychological treatment was the next step; at this point, some patients and family members became resistant to the idea that they had PNES. The stigma of a psychological condition (or at least one that cannot be quantified by current science and technology) is quite strong.
So while the name is important to a degree, good communication about how physical symptoms can stem from psychological causes, and how treatment can help, appear to be just as important, if not more so, than what the attacks are called.
The forced dichotomy between mind and body is part of the challenge; one meeting participant noted that psychological counseling would benefit everyone with a chronic condition, and perhaps normalizing it in this way could help ease the path toward successful treatment for people with PNES.
Integration is key, said W. Curt LaFrance, a neurologist and psychiatrist at Brown University, USA. “We treat a whole patient, so when we talk about bringing the brain and mind together, that’s where we can have a dialogue.”
Stigma from the public – and from health professionals
There’s no test or imaging modality to show that someone has functional seizures – and neither the public nor the medical community is completely accepting of medical issues that aren’t supported by objective evidence. People with depression, anxiety, post-traumatic stress disorder, and substance use disorders routinely are told to “snap out of it” or treated as if they’re at fault for their condition. PNES faces similar challenges, with the additional challenge that no medication has been shown to be effective.
The everyday stigma of PNES can affect relationships. Nina Pye began having attacks in 2015 as a university student in the United Kingdom. Even after medical professionals told her she had PNES and she began treatment, family and friends seemed to have a limit to their understanding.
“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?’,” said Pye in 2019. “It’s as if there are only a certain number of seizures you can have before people tell you it’s enough.”
South African Franci van den Berg had her first attack at age 13. “The hardest challenge for me was not getting over PNES—it was the people,” she said in a 2019 interview with ILAE. “People said I was faking it or crazy. One woman spread rumors that I was in a mental institution because I just wanted attention. I lost a lot of friends, and my parents lost friends.”
But stigma from medical professionals also leaves patients angry and bewildered. Until the medical community understands the severity of the condition and views it with legitimacy and empathy, the label doesn’t matter much, said Bridget Mildon, founder and chair of FND Hope International, a nonprofit group dedicated to awareness and support for people with functional neurological disorders (FND). Because PNES is a symptom, not a diagnosis, many people with PNES receive a diagnosis of FND or conversion disorder.
“It’s uncomfortable to talk about, but the reality is that bias comes from the medical community,” Mildon said. “Doctors roll their eyes and say ‘Oh, it’s just functional.’”
Who should take ownership of treating PNES?
Some medical professionals do more than roll their eyes; they actively discount the experiences of patients, some going so far as to mock or ridicule them. Here are a few examples from an online forum for people with functional seizures:
“After my last appointment, my neurologist just berated me and made me feel awful for what's going on. Still didn't offer me any information other than telling me I had conversion disorder.”
“I’ve been having seizures more frequently lately. I’ve been to the hospital twice. This last time, one lady said, ‘She probably just comes here to get out of work.’”
“Emergency-room doctors and nurses have scoffed at me and mocked me . . . I was not aware, but my dad said one doctor shook my seizing body and yelled at me aggressively to “Cut it out.” Another looked me dead in the eyes and said sternly, ‘You are not having seizures. You have never had a seizure.’”
Nina Pye had several run-ins with paramedics who were sure she was faking. “I had paramedics ask me, ‘Don’t you realize we have actual lives to save?’” she said.
The good news, said Markus Reuber, neurologist at the University of Sheffield, UK, is that medical professionals who know more about functional seizures – for example, neurology nurses and EEG physiologists – have fewer negative views, compared with emergency department staff. “I also think there is a slow, but noticeable, shift in how experts write and think about this disorder and take account of patient experiences,” he said.
Still, there is work to be done all around, including work to help neurologists and epileptologists understand their role in treating these patients, said Dworetzky. “The neurologist’s job is not just to diagnose and say, ‘I’m done’ but to say, ‘It’s my job to make sure there isn’t something else going on, or something new that develops, that might be epilepsy,” she said.
The gray area is not insignificant. EEG is not perfect: Though PNES don’t have a correlate on EEG, approximately 10% of epileptic seizures don’t either. Frontal lobe epilepsy, in particular, may be confused with PNES. And epilepsy and PNES can co-occur: A 2016 study estimated that between 7% and 15% of people with PNES have epilepsy as well, and several studies found that as many as 20% of patients exhibited both epileptic and non-epileptic seizures during video EEG monitoring.
Functional neurological disorder – a solution?
Mark Hallett, president of the FND Society and a neurologist at the US National Institutes of Health, suggested that a single term is needed for both clinicians and patients, and that “functional” should be part of that term. He noted that there are many overlapping subtypes of FND that share a common epidemiology, pathophysiology, and treatment options.
David Perez, a neurologist at Harvard Medical School, USA, said he uses the term “functional neurological disorder” or FND. “But when I hear FND referred to as a pure neurological disorder, the psychiatrist in me cringes,” he says. “I share with patients that FND sits between neurology and psychiatry.”
“For me, the terms ‘functional’ and ‘dissociative’ are the least worst terms,” said Jon Stone, a neurologist at the University of Edinburgh, UK. “Patients and researchers prefer the term ‘functional,’ but the preference seems related to the stigma of other terms and not to the usefulness of the word ‘functional’.”
In one survey conducted by FND Hope, more than 65% of patients felt that the label for their disorder had a negative impact in some way. “Labels influence the treatment they can access, as well as cause stigma,” said Mildon. “The label also can make it difficult to talk about the problem. And when the medical community can’t agree on a name, it discredits the diagnosis.”
Bringing body and mind together
More research is necessary to shed light on mechanisms, said Leigh Goldie, founder and CEO of Empowering Epilepsy. “We need more people involved, and more measures,” she said. “The move to empirical studies – face processing, galvanic skin response, other measures of interoception – will help. Providing a possible mechanism helps the discussion between clinician and patient get going on a positive note.”
“The idea that the brain is predicting what’s going to happen next and integrating outputs is a key aspect of this, and I think we’re going to see that across the board,” said Nicole Roberts, a psychologist at Arizona State University, USA. “It might end up that there are a few key networks involved.”
Wide adoption of a term such as FND may be a prime way to raise awareness about the integration of mind and body, said Perez. “We know that mental illness is stigmatized and that there’s a divide between physical and mental health,” he said. “But mental health and physical health are not separate. I’ve often wondered if FND is an avenue to tackle that.”
Such awareness must also become part of medical training, said Gaston Baslet, a neurologist at Harvard Medical School, USA. “It has to start early – integrating the diagnosis into specialties and getting people to work collaboratively.”
“There is not going to be a single perfect solution” to the naming issue, said Reuber. “Some terms are too vague, at least for some scenarios, and some are too specific. We need to search for the best compromise. My hope is that the process of thinking about the name -- even if we can‘t come up with a universal winner -- will help to speed up the process of changing attitudes toward and enhancing understanding of this condition -- internationally, across medical specialties, and at the patient-clinician interface.”
“I think this discussion will help move us forward,” said Dworetzky. “And to help neurologists, psychiatrists, and other mental health professionals to agree that patients should be in both [neurology and mental health provider] offices. The name should not be a reason to say, ‘I can’t help you anymore.’
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