The name for psychogenic nonepileptic seizures likely is migrating. Throughout the year, there have been numerous peer-reviewed publications and editorials in Epilepsy & Behavior discussing the problems with the current terminology. This prompted the Functional Neurological Disorder Society (FNDS) and the American Epilepsy Society’s Special Interest Group in Psychogenic Nonepileptic Seizures to engage in the necessary work to change the name. While a consensus has not been reached, it seems that both patients and healthcare providers are debating between “functional" seizures and “dissociative" seizures.
To review, the original term for this condition was hystericoepilepsy, which fell out of favor because of its implied relation to the uterus and inclusion of the term “epilepsy.” While 75% of people with functional or dissociative seizures are women, 25% of patients are men. The older term taught in some textbooks is “pseudoseizures,” which was eschewed in the early 2000s because these seizures are not fake or faked, as suggested by the prefix “pseudo.” Instead, these seizures are involuntary and cause real disability, commensurate, or worse than patients with medication-resistant epilepsy. Voluntarily feigned seizure-like events are either fictitious or malingering, which are treated quite differently from functional or dissociative seizures.
The currently accepted term by the International League Against Epilepsy (ILAE) is Psychogenic Nonepileptic Seizure (PNES). While that acronym is unfortunate when pronounced in English, prior studies showed that the “psychogenic” portion of this name offends 1 in 4 people with the condition, which is similar to the offensiveness of pseudoseizures. In contrast, functional seizures and dissociative seizures offend far fewer people, but both terms are imperfect.
The term “functional seizures” implies that there is a problem with the function of the nervous system as compared to the structure and matches with the more general term of Functional Neurological Disorders (FND) used to describe the category of illness, including but not limited to: movement and cognitive disorders. During the FNDS flipped classroom, patient advocates for FND favored this unity across the conditions. The criticisms of this term are that we have increasing evidence that there are structural changes in connectivity, as measured by MRI in functional seizures. Additionally, by differentiating functional from structural, we perpetuate the dualism between psychiatry and neurology that are associate with barriers in the delivery of care. Lastly, the surgery that is performed for epilepsy is called “functional neurosurgery” because, similarly, epilepsy is a network disorder that may or may not be associated with a structural lesion.
The alternative term “dissociative seizures” suggests that patients separate from physical control of their body and sensations. This implies a similar psychopathological mechanism to other dissociative disorders, that generally include an element of lapse of memory, which doesn’t always happen in dissociative seizures. This psychopathological mechanism, however, has not been established in dissociative seizures. Unfortunately, the term “dissociative” also sounds similar to “dyscognitive,” which was briefly part of the ILAE terminology for epileptic seizures, and could lead to misunderstanding, and overtreatment of prolonged dissociative seizures by ER physicians.
In addition to these terms, there was discussion about the specific inclusion of the word “nonepileptic” and the noun “seizure.” Neurologists and epileptologists clearly expressed that one key message is that these seizures are not caused by epilepsy, and therefore should not be treated with antiepileptic medications. However, tension headaches have a functional component and are non-migrainous headaches, and yet do not require the rule out a term in their name. One of the main themes in education about FND is that they are no longer rule out diagnoses because there are clear positive signs and associated factors. Viewing these conditions as “rule-out” may contribute to delays in diagnosis that were associated with poor both short- and long-term outcomes.
Lastly, the term “seizure” has the Oxford dictionary definition of being taken by an illness suddenly and therefore does not necessarily mean epilepsy, but typically is assumed to imply epilepsy. The terms “event,” “attack,” “episode,” and “fit” are all vague and do not describe the lived experience of patients and observers. The severity of these words also minimizes the perceived severity of functional or dissociative seizures, even though the elevated mortality risk of patients with functional or dissociative seizures is not significantly different from the elevated mortality risk of patients with epileptic seizures. However, there is a movement to change the term for antiepileptic drugs to antiseizure medications, which could lead to further confusion about the interpretation of the word “seizure.”
Despite all of this discussion about the name for the condition itself, there was agreement that the most important part of delivering a diagnosis and treating a patient with functional or dissociative seizures is the education and resources that come with it. This delivery of diagnosis includes an explanation of the condition taking into account the individual patient’s experiences, education, and cultural background. After diagnosis, the patient should not feel abandoned by the diagnosing clinician (ala “diagnose and adios”) and instead, should feel empowered that diagnosis has been made based on positive findings and that there are options for treatment, generally including cognitive-behavioral-informed therapy with or without concomitant pharmacotherapy. Therefore, while choosing a descriptive and non-offensive name is important, it may be more important to breakdown the stigma of the condition so that our patients are not retraumatized by well-meaning but uninformed medical providers.