I recently attended a neurology conference at UCLA about Psychogenic Non-Epileptic Seizures (PNES). The discussion highlighted persons with uncontrolled seizures (szs). If patients do not respond to two anticonvulsant drugs (AEDs), a non-epileptic cause should be considered. As these PNES are not true seizures caused by epilepsy they should be considered Non-Epileptic Events (NEE). The term “psychogenic” for these non-epileptic events colors the diagnosis in an improper light which focuses on psychiatric causes. “My doctor thinks I’m crazy.” No! Unlike epileptic seizures, though, these non-epileptic events do not have an organic cause.
People do not consciously bring on these NEE “seizure-like events”; these events are not accompanied by electroencephalographic (EEG) changes. The psychological mechanism causing the event is referred to as a CONVERSION episode. NEEs can be serious as they interfere with jobs, driving, education, and etc. If a woman is pregnant and her “seizures” are actually NEE that are misdiagnosed the ineffective AED treatment can have serious side-effects on mother and fetus.
Non-epileptic events (NEE) can be difficult to diagnose. Five to ten percent of patients with non-epileptic events (NEE) also have true epileptic szs (some of their szs are accompanied by epileptiform-EEG changes while others are not). Non-epileptic events are best diagnosed in an epilepsy monitoring unit (EMU) where video recording is accompanied by simultaneous EEG recording. These patients are especially difficult to treat: is the AED a failure? Switch to another AED? Is this seizure epileptic or a NEE? Between 30-40 percent of patients in the Epilepsy Monitoring Unit at the Santa Barbara Cottage Hospital receive a diagnosis of NEE.1 Malingering, or consciously faking “seizures” was ruled out by the medical team.
Some conditions can mimic epileptic seizures: fainting due to low blood pressure or due to heart abnormalities or due to emotional stress. Some faints can be accompanied by mild jerking that can be confused with a sz. Other mimics can be low blood sugar; breath-holding in children; and complex migraine.
Characteristics of non-epileptic events:
1) Eye closure at onset: present in about 80 percent of non-epileptic events. Eyes are usually open during actual epileptic szs.
2) Crying: can occur prior to, during or after the event. Crying is rare during epileptic szs.
3) Asynchronous movements with different timing on different sides of body are characteristic of non-epileptic events.
4) Pelvic thrusting due to back muscle-contractions is not seen during epileptic seizures.
5) Epileptic szs have a beginning, a middle phase and an end, e.g., they start with muscle-tightening contractions that progress to jerking before the sz ends. Absence of this progression suggests non-epileptic events.
6) Long duration: average epileptic szs last a minute. If the “sz” lasts much longer, e.g. 30 to 60 minutes or more, it is likely to be a non-epileptic event.
Characteristics of NEE Sufferers:
a) NEE patients are more frequently women (with mean onset age 31).
b) NEE in children is infrequent but there is no upper age limit.
c) Anxiety or depression had been diagnosed in 46 percent of NEE sufferers and 57 percent of this population have at least one other medically unexplained symptom.
d) Post-Traumatic Stress Disorder (PTSD) has been diagnosed in 30 percent of people who have NEE.
e) Sexual abuse had occurred in 30 percent of people with NEE and physical abuse occurred in 25 percent.
f) NEE is seen in a significant number of active and former military personnel who had been exposed to blast injuries.
A four-arm study2 for treatment of NEE included: a) patients treated only with Sertraline, a psychiatric selective serotonin reuptake inhibitor (SSRI) antidepressant medication, b) patients treated only with cognitive talk/behavioral therapy (CBT), c) patients treated with Sertraline plus CBT, d) patients treated with standard medical care (with AEDs, etc.). This study’s results showed CBT alone was most successful. No reduction in szs was seen with Sertraline only or with standard medical care.
While treatment of any psychiatric condition is often difficult, prognosis is much better if a correct diagnosis can be made early and treated. People whose NEE have been ongoing for years are less likely to respond to CBT. Education of patients and their families is paramount.
1. Gibbs M. Differentiating between psychogenic non-epileptic and epileptic seizures. Neurotransmitter. A publication of Santa Barbara Neuroscience Institute at Cottage Health. Fall 2018; p 4.
2. LaFrance, Curt, et.al. Management of Psychogenic Nonepileptic Seizures. Epilepsy 4 Mar. 2013 onlinelibrary.wiley.com/doi/abs/10.1111/epi 12106.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.