Updated October 13, 2019
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 people 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.
In addition to being common, psychogenic symptoms pose an uncomfortable and often frustrating challenge, both in diagnosis and management ~ Selim R. Benbadis MD
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 an 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 people with PNES is common. In fact, at least 25% of people who have a previous diagnosis of epilepsy and are not responding to drug therapy are found to have been 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.
- First, physicians are taught almost exclusively to consider (and exclude) physical disorders as the cause of physical symptoms. Furthermore, and understandably, physicians are more likely to treat for the more serious condition if they are in doubt of the diagnosis, which explains why many people misdiagnosed with epilepsy are prescribed antiepileptic drugs.
- Second, the diagnosis of seizures depends largely on the observations of others who may not be trained to notice the subtle differences between epileptic and nonepileptic seizures.
- Lastly, many physicians do not have access to video EEG (electroencephalogram) monitoring, which has to be performed by an epileptologist (a neurologist that specializes in epilepsy).
What exactly are PNES?
PNES are attacks that may look like epileptic seizures but are not caused by abnormal brain electrical discharges. Instead, they are a manifestation of psychological distress. PNES are not a unique disorder but are a specific type of a larger group of psychiatric conditions that manifest as physical symptoms. Those used to be called somatoform disorders (DSM4) and are now termed somatic symptoms disorders (DSM5). PNES can also be considered dissociative disorders.
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 focal impaired awarneness (previously called complex partial) seizures. A physician may suspect PNES when the seizures have unusual features, such as type of movements, duration, triggers, and frequency.4
What causes PNES?
As for other somatic symptom disorders, 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 some people with PNES.
- Somatic symptom disorders, previously called somatoform disorders, are conditions that are suggestive of a physical disorder, but upon examination cannot be accounted for by an underlying physical condition and are attributable to psychological factors.
- Conversion Disorder is defined as physical symptoms caused by psychologic conflict, unconsciously converted to resemble those of a neurologic disorder.
- Conversion disorder tends to develop during adolescence or early adulthood but may occur at any age. It appears to be somewhat more common among women.5
How are PNES diagnosed?
According to Benbadis, while EEGs are helpful in the diagnosis of epilepsy, they are often normal in people with proven epilepsy and cannot be used alone as a diagnostic tool for epilepsy. The most reliable test to make the diagnosis of PNES is video EEG monitoring that records the episodes in question.
- During a video-EEG, the person 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 person will usually be referred to a psychiatrist for further care.
- Video-EEG monitoring is traditionally performed in a hospital, but in some circumstances and with modern equipment, it can also be performed at home.
- When video-EEG monitoring is not available, cell phone videos obtained by witnesses can be extremely helpful to the neurologist in suspecting the diagnosis.
“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 and money, and tend to invoke a tremendous amount of frustration on the part of the healthcare professionals working with this population,” said Susan Kelley PhD, 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 people 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 cannot. 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
Other psychological therapies include
- Cognitive Behavioral Therapy (CBT)
- Prolonged Exposure Psychotherapy
- Interpersonal and Pscyhodynamic Psychotherapy
- Mindfulness Based Psychotherapy
- Family Therapy
Learn more about PNES treatment
Dealing with the Stigma Associated with Psychiatric Disorders
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.” Many 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.
PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault ~ Dr. Benbadis
If you would like more information regarding PNES, download this brochure from the University of South Florida Health.
- Benbadis SR, A spell in the epilepsy clinic and a history of "chronic pain" or "fibromyalgia" independently predict a diagnosis of psychogenic seizures. Epilepsy Behav 2005(6):264-265.
- Benbadis SR, Psychogenic Seizures. http://www.emedicine.com/NEURO/topic403.htm
- Benbadis SR,The problem of psychogenic symptoms: is the psychiatric community in denial?.Epilepsy Behav 2005(6): 9-14.
- Benbadis SR, Heriaud L., Defining Psychogenic Non-epileptic Seizures, A Guide for Patients & Families.
- The Merck Manual of Therapy and Diagnosis, Section 15, Chapter 186, Conversion Disorder. www.merck.com
- EMDR Institute Inc., A Brief Description of EMDR. http://www.emdr.com