Dr. Selim Benbadis, director of epilepsy at University of South Florida in Tampa, and Lorna Myers PhD, director of the PNES Program from the Northeast Regional Epilepsy Group, discuss nonepileptic events in a 2015 Ask the Experts video series.
Psychogenic nonepileptic seizures (PNES) are an uncomfortable topic, one that is difficult for both patients and healthcare professionals to discuss and treat. Yet it is estimated that PNES are diagnosed in 20 to 30% of patients seen at epilepsy centers for intractable seizures.1 Moreover, in the general population the prevalence rate is 2-33 per 100,000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia.2 Despite these startling statistics, PNES has largely remained a conversation held behind closed doors and in hushed tones throughout the medical community – until now.
A leading pioneer in the study of PNES, Benbadis is director of the Comprehensive Epilepsy Program and professor of the Departments of Neurology and Neurosurgery, University of South Florida and Tampa General Hospital. He has openly encouraged both the psychiatric and neurological community to broaden their clinical knowledge base when diagnosing and treating people with PNES.
In a recent editorial published in Epilepsy & Behavior, Benbadis wrote, “The American Psychiatric Association has abundant written patient education material available on diverse topics, but none on somatoform disorders. Psychogenic symptoms are also not the subject of much clinical research. Thus, there seems to be a severe disconnect between the frequency of the problem and the amount of attention devoted to it.”3
Benbadis also contends that the misdiagnosis of epilepsy in patients with PNES is common. In fact, approximately 25% of people who have a previous diagnosis of epilepsy and are not responding to drug therapy are found to be misdiagnosed.
“Unfortunately, once the diagnosis of epilepsy is made, it is easily perpetuated without being questioned, which explains the usual diagnostic delay and cost associated with PNES,” he states.
It is important to note that the diagnosis of PNES may be difficult initially for several reasons.
PNES are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress.
Frequently, people with PNES may look like they are experiencing generalized convulsions similar to tonic-clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features, such as type of movements, duration, triggers, and frequency.4
A specific traumatic event, such as physical or sexual abuse, incest, divorce, death of a loved one, or other great loss or sudden change, can be identified in many people with PNES. By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.1
According to Benbadis, while EEGs are helpful in the diagnosis of epilepsy, they are often normal in people with proven epilepsy and should not be used alone as a diagnostic tool for epilepsy. The most reliable test to make the diagnosis of PNES is video EEG monitoring.
During a video-EEG, the patient is monitored (over a time-period spanning anywhere from several hours to several days) with both a video camera and an EEG until a seizure occurs. Through analysis of the video and EEG recordings, the diagnosis of PNES can be made with near certainty. Upon diagnosis, the patient will usually be referred to a psychiatrist for further care.
“Somatoform disorders are very difficult to treat because as soon as you extinguish one symptom another one pops up. These disorders consume a lot of time, money and tend to invoke a tremendous amount of frustration on the part of the healthcare professionals working with this population,” said Susan Kelley, Ph.D., professor of Behavioral Health at the University of South Florida, Tampa, and psychotherapist in private practice. Kelley herself has been able to circumvent this frustration as she has adopted a trauma-focused clinical approach, which not only serves her well as a clinician, but also helps her patients with PNES to overcome their seizures.
“For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder (PTSD). In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body,” she continues.
She postulates that when a person experiences trauma (such as physical abuse, sexual abuse, witness to violence), his or her body can absorb this trauma. Therefore, a seizure is the body’s way of expressing what the mind and mouth can not. What Kelley has found to be the most effective treatment for PNES is a therapeutic technique called Eye Movement Desensitization and Reprocessing (EMDR).
EMDR integrates elements of many psychotherapies including psychodynamic, cognitive behavioral, interpersonal, experiential, and body-centered therapies. During EMDR the client attends to past and present experiences in brief sequential doses while simultaneously focusing on an external stimulus. Then the client is instructed to let new material become the focus of the next set of dual attention. This sequence of dual attention and personal association is repeated many times in the session.6
Understandably, many people's first reactions upon hearing they have PNES, and not epilepsy, is one of disbelief, denial and confusion. That is because mental health issues come with highly stigmatized labels such as "crazy," "insane," etc. These stigmas are embedded in our language and even more deeply in our unconscious belief system.
However, people with PNES are not “crazy” or “insane”. Some of them are victims of trauma. Their recovery from the trauma, as well as the seizures, depends largely on their ability to overcome the stigma and follow-up with a mental health professional.
Kelley agreed and said, “We need to take the shame and stigma away associated with psychiatric illnesses and instead focus on the fact that many people with PNES have a trauma history. It is so vital for people suffering with PNES to know that there is hope and that PNES is treatable through such techniques as EMDR.”
While EMDR works for people with PNES who have experienced trauma, it does not work with people who have not. Kelley emphasizes the need for “greater cooperation and collaboration among the neurology, psychiatry, and psychology disciplines, so that we can find more treatments that will bring relief to these patients.”
In his latest study, Benbadis and colleagues examined the relationship between chronic pain or fibromyalgia and psychogenic seizures. They designated two groups:
Benbadis, et al. derived their data from the records of all patients evaluated over 5 years in a single epilepsy clinic for refractory seizures as well as through EEG/video monitoring.
“These findings suggest that a history of fibromyalgia or chronic pain” and the occurrence of an episode during the visit both have a high predictive value (75% each) and a very high specificity (99%) for an eventual diagnosis of PNES,” said Benbadis. He speculates that the association between chronic pain and PNES may be “because chronic discomfort can cause psychological distress, which may result in PNES.” He also points out that another possibility is that “fibromyalgia and chronic pain are loosely made diagnoses that are largely psychogenic in themselves.”
Whether fibromyalgia and chronic pain are largely psychogenic in nature remains a highly controversial subject. Some researchers believe fibromyalgia is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. While others in the medical community strongly believe fibromyalgia and chonic pain are psychogenic in their etiology since there is no clear underlying medical cause. Currently, the rift between these two schools of thought still remains.
If you would like more information regarding PNES, go to http://hsc.usf.edu/COM/epilepsy/PNESbrochure.pdf