Banner by Harshitha Gompa

Fake, functional, or fatal? The failure to understand non-epileptic seizures

By Kyr Goyette

What do you think of when you hear the word “epilepsy”? You might think of a family member with the condition who can’t drive, an elementary school classmate who had a seizure in class once and had to be taken to the hospital, or maybe just a condition that causes a great deal of interruption to one’s day-to-day life. Regardless of whether you know someone with epilepsy or not, the condition is broadly understood to be disabling, challenging to live with, and frequently lifelong. 

Now, what do you think of when you hear the term “psychogenic non-epileptic seizures”? What about “functional seizure disorder”? Or “functional dissociative seizures”? If you’ve never heard these terms before—which is likely—you might see the words “psychogenic” and “dissociative” and assume that these kinds of seizures are psychological in origin. Consciously or not, you might also then assume that they are a less severe or less “real” disease compared to epileptic seizures, where the misfiring electrical pathways that lead to seizures can be neatly observed on electroencephalograms (EEGs). You wouldn't be the only one. 

“One of the most common things I hear is ‘I’ve never heard of this, I haven’t seen it before, so what is it?’” says Dr. Wesley Kerr, an epileptologist specializing in functional seizures at the University of Pittsburgh Medical Center. Dr. Kerr is currently researching mortality rates between those with functional seizure disorders compared to those with epilepsy and investigating causes of death in each group. The preliminary results of this research, yet to be published, suggest that the mortality rate for patients with functional seizures is at least equivalent to the mortality rate for patients with epilepsy—over a 1.5 greater risk of death compared to the general population. As these results, as well as Dr. Kerr’s previous research, suggest, functional seizures can be as debilitating as epilepsy—though their severity can be underestimated both inside and outside of the medical field.  

“When patients show up in the ER, they hear, ‘I don’t believe this, you’re faking this.’ They’re mocked,” says Dr. Kerr. “I’ve had patients who worked in the medical field who really struggled with internalized stigma against themselves. They had the training of ‘we don’t call them pseudo-seizures’ but they still were thinking of them as fake in their own head.” One reason for medical professionals’ profound misunderstandings of functional seizures is that the terminology applied to them and the awareness of what causes them has evolved rapidly in the past several decades. The term “functional seizures” has replaced the inaccurate or insensitive terms used in the medical field, such as “psychogenic non-epileptic seizures,” within the last decade. Functional seizures are frequently described as a part of functional neurological disorder (FND), a broader condition encompassing multiple neurological and psychological symptoms that historically may have been labeled as hysteria.  

Since ancient Greek times, when they were believed to be the result of curses sent down from the gods, doctors have sought explanations for symptoms that appear to have no physiological cause.  Along with this supernatural explanation, the ancient Greeks, as well as the ancient Egyptians, also attributed certain symptoms to the “wandering” of the womb around the body or, in the case of men, general sexual dysfunction. This conception is where the term “hysteria” originated, derived from the ancient Greek word for womb, hystera. Questions about the legitimacy of both explanations were raised as early as the sixteenth century but were not entirely abandoned until the experiments of French physicians,Pierre Briquet and Jean-Martin Charcot, in the second half of the 19th century reconceptualized these symptoms as neurological disorders or potentially mental illnesses. This explanation was rapidly replaced in the early 20th century as Freudian psychoanalysis came to dominate Western medicine. Although the explanation and treatment for the condition shifted throughout the centuries, the name hysteria remained and carried with it a stigma of female irrationality that still lingers for some patients and clinicians today even as the term “hysteria” has fallen out of use. 

Skepticism about the ability of a psychoanalytic theory to fully articulate functional disorders and Eliot Slater’s influential 1965 paper—establishing that a large number of patients originally diagnosed with hysteria were later found to have pathologically definable diseases— prompted the dissolution of the single diagnosis “hysteria” in 1980. That dissolution led to the creation of separate categories for “somatoform disorder, body dysmorphic disorder, dissociative disorders and conversion disorder” structured around symptomatic clusters. In the past, diagnosis of functional neurological disorder was a diagnosis of exclusion, meaning it would be given to a patient after ruling out epilepsy. Today, the most recent edition of the "Diagnostic and Statistical Manual of Mental Disorders” focuses on symptoms indicative of functional neurological disorder, opposed to merely the absence of epilepsy, to diagnose this condition. 

This is not to say, however, that FND and prominent symptoms, such as non-epileptic seizures, are understood to be purely psychological in practice—the terminology “functional neurological” is intended to clarify this. Contemporary neurobiological research suggests that functional symptoms may be the product of alterations in neural circuitry that produced increased connectivity in the limbic-motor network and alterations to systems involved in emotion and cognition. Dr. Kerr summarizes the changes observed in FND as being analogous to those that we see in mental health conditions like depression, anxiety, and schizophrenia. Psychological disorders can be associated with variations in brain structure and activity as observed through imaging; this is a prime example of a place where the interconnections between psychiatric and neurologic conditions make it difficult to disentangle one from the other. After all, they’re both “all inside our heads.” This is far from a comprehensive history, but it does provide valuable context for the myriad of connotations that come along with a functional disorder diagnosis owing to the complicated heritage of hysteria. 

The position that functional seizures are fake or less serious than epilepsy is sharply contradicted by the research done comparing the two conditions. Research done at King’s College in London found that individuals with epilepsy and functional seizures both demonstrated reduced interoceptive accuracy and ability (interoception refers to the ability to correctly interpret signals from the body) compared to a population of general controls, and that patients with functional seizures had a greater deficit than patients with epilepsy. Injury rates are equivalent between patients with epilepsy and functional seizures, a significant finding since injuries significantly contribute to overall disease burden. Another relevant contributor to disease-burden is the extent to which a condition limits independence; an additional study found that patients with functional seizures and those with epilepsy are similarly incapable of driving due to the danger of having a seizure while in control of the car. 

Beyond day-to-day life, Dr. Kerr’s study findings of an elevated mortality rate amongst patients with functional seizures further demonstrates the severe implications of this diagnosis on a patient’s health. Another study, drawing data from Swedish national registers, endorses the conclusion that individuals with functional seizures have an elevated risk of both natural and non-natural causes of death. In most cases, it seems that comorbid conditions are the primary cause of death for patients; in particular, depression and suicidal ideation have a devastating impact on the community. As of now, it is unclear what this elevated mortality rate means about the etiology of functional seizures. Regardless, better understanding of this bidirectional relationship between comorbid conditions and functional seizures could help mitigate risk of death.  

Increased risk of death by natural causes amongst patients with functional seizures remains even when psychiatric comorbidities are controlled for, suggesting that the diagnosis of functional seizures is itself a risk factor for mortality outside of increasing suicide risk. One of the major gaps in research on functional seizures is the exact causes of natural death and what, if any, connections may be made between the neurobiological origins of functional seizures and these mortalities. An additional gap— relevant to the presence of psychiatric comorbidities— is the extent to which the stigma of some clinicians acted as a barrier to care. Dr. Kerr explained the tendency of neurologists to “diagnose and adios” when it comes to patients with functional seizures: “You’re given this diagnosis and told ‘You no longer need to see me,’ without any real follow-up plan, and that’s very dismissive.” 

In addition to being a part of a long-term care network, Dr. Kerr helps patients handle their new diagnosis and avoid feeling abandoned by connecting them with charities like FND Hope. However, he also warns patients that there is some misinformation in these communities: “People who are anti-medicine will say that if [a doctor] makes a diagnosis of FND, it’s because the doctor just doesn’t know what’s going on.” A consequence of the pervasive dismissal of patients with FND is the fomenting in these spaces of serious mistrust of the medical field, which isn’t helpful when you are working within the medical field to try to care for these patients better. “There are some people in the online community that are walled off and have been traumatized by the medical system. So even if you comment, ‘Hey, this is a thing, this is real,’ and you’re a supportive neurologist, they assume that you have this alternative agenda because you have the letters ‘MD’ after your name.” 

Outside of formal research, social media has recently provided an avenue for patients with functional disorders, especially those with functional seizures, to share their experiences of dismissal, neglect, and abuse by the medical profession. Creators such as @theannegirl (Instagram), who is diagnosed with functional neurological disorder, share content about their lives with conditions that are frequently labeled as being caused by “anxiety” or vague mental health issues. Their stories of being essentially abandoned by doctors who decide that they were faking or exaggerating their illness and that they just need to “deal with it” are heartbreaking and, if the thousands of comments describing shared experiences are any indication, tragically ubiquitous amongst those diagnosed with some form of functional disorder.  

Comment sections are painfully illustrative of broad attitudes towards functional disorders. Comments such as “Faking a disability is wild,” “Looks like a sever[e] case of needing content,” “It’s not anxiety that’s ridiculous!!! It’s attentionseekingitis,” “It’s all in your head. Just walk normally,” and “This is conversion disorder. Completely psychological,” get hundreds of likes and replies of agreement under a video of gait ataxia (difficulty walking) caused by FND or a non-epileptic seizure. Within these comments are evidence of how the etymological history of “functional seizures” continues to impact public perception and treatment of patients. Tellingly, a number of those comments are from self-described nurses, EMTs, and doctors.  

There is reason to believe that the situation will continue to improve. Social media content does some good in raising awareness. Video captions of symptoms often include information about functional disorders to attempt to dispel misperceptions about the condition. Messages of support and curiosity usually equal and sometimes outweigh dismissive or outright cruel ones. However, much more research and a reinvention of medical education about functional disorders will be needed to address widespread systemic invalidation by the medical field and truly improve outcomes for patients diagnosed with functional seizures. A major part of this is the creation of more functional seizure clinics like the one at UPMC. Dr. Kerr emphasizes that “multidisciplinary treatments are how you get things done for epilepsy and for functional seizures. The functional seizure clinic developed out of our existing infrastructure for treating epileptic seizures—our psychiatrist was already the embedded psychiatrist within the epilepsy clinic at UPMC. Addressing the comorbidities of mental health can make a bigger impact on quality of life than addressing seizures, whether functional or epileptic.” 

As of 2023, only 20 functional neurology clinics exist in the United States—a supply that falls far below the demand for a condition affecting an estimated 250,000–500,000 individuals in the country.A commitment to expanding access to care, as well as the aforementioned research and medical training, is needed to improve treatment for patients with FND. The medical field has been moving in the right direction, helped along by patient advocacy, but it still has a long way to go.