Improving Care for Psychogenic Nonepileptic Seizures

Specialized PNES program at Cleveland Clinic

By Becky Bikat Tilahun, PhD, and Jocelyn Bautista, MD

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Many patients referred to epilepsy centers for evaluation do not actually have epilepsy. In fact, after video-EEG monitoring, approximately 30 percent of patients referred to Cleveland Clinic’s Epilepsy Center are diagnosed with psychogenic nonepileptic seizures (PNES). Recognizing the prevalence of PNES and the need for providing integrated mental health services for patients diagnosed with the disorder, the Epilepsy Center, with support from Cleveland Clinic’s Department of Psychiatry and Psychology, launched a specialized PNES program.

The program includes a full-time clinical psychologist, who is key to helping reluctant patients accept the PNES diagnosis and pursue therapy. The program also focuses on improving understanding of and treatments for PNES. Another important programmatic goal is partnering with mental health providers and organizations across the country to build a network of professionals capable of treating this underserved population.

Epilepsy vs. PNES

While PNES is not caused by epileptiform discharges in the brain, its signs and symptoms can closely resemble those of epileptic seizures. PNES are categorized as a conversion disorder, renamed as one subtype of functional neurological symptom disorder in DSM-V. Rates of patient disability and lost productivity with PNES are similar to those associated with epilepsy.

Many patients with PNES are trauma survivors with multiple psychiatric comorbidities, including post-traumatic stress disorder, mood and anxiety disorders, dissociative disorders, and personality disorders. The stressors they have experienced can trigger somatic symptoms, especially in people with ineffective coping mechanisms, such as denying and suppressing emotion.

Diagnosis is often delayed, as many patients are initially misdiagnosed with epilepsy and receive trials of antiepileptic medications. PNES does not respond to anticonvulsants.

Video-EEG is considered the gold standard for diagnosing PNES, although capturing a typical event during inpatient monitoring is not always possible. The hallmark finding is the absence of EEG changes during a seizure-like event.

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Treatment is challenging

Even when video-EEG confirms the diagnosis of PNES, for numerous reasons many patients remain untreated. The diagnosis is often made by neurologists and epileptologists who are not trained to perform the psychosocial formulations often required, while treatment relies on psychiatrists and psychologists who may not trust the diagnosis, particularly if a patient’s psychosocial stressors are not evident.

Patients themselves often resist the diagnosis and question the need for mental health treatment. They may feel they are being blamed or accused of feigning symptoms. Finally, even if a patient accepts the diagnosis, appropriate mental health services may not be available. Few mental health professionals have the training and experience to successfully treat patients with PNES.

Psychotherapeutic approaches differ for PNES, depending on traits that trigger the disorder in specific patient subgroups. Patients with hypoarousal tend to be uncomfortable with expressing emotion, even when highly distressed. Patients with hyperarousal experience intense emotions that they have difficulty regulating. No matter the cause, patients learn effective coping skills that help them to control their PNES and restore the quality of their lives. In addition to individual psychotherapy, group and family sessions may be indicated, as well as referral to a psychiatrist for pharmacologic treatment.

Responding to clinical need

To date, Cleveland Clinic’s PNES program has focused on:

  • Improving physician-patient communication, focusing on the importance of empathy when delivering a PNES diagnosis
  • Exploring the patient’s perspective after receiving a PNES diagnosis, in order to improve the patient experience
  • Standardizing the psychosocial formulation provided by psychiatric consultative services to improve provider-to-provider communication and facilitate treatment
  • Improving communication with patients’ mental health providers outside Cleveland Clinic to help ensure continuum of care
  • Improving access to effective PNES-specific psychotherapy
  • Measuring outcomes of care, including healthcare utilization

 

Epilepsy Center staff co-chaired a practical session on mechanisms, diagnosis and management of PNES at the 24th Annual International Epilepsy Symposia in Brazil in October 2015.

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Dr. Tilahun is an associate staff member and clinical psychologist in the Epilepsy Center.

Dr. Bautista is Institute Quality Improvement Officer for Cleveland Clinic’s Neurological Institute and an Epilepsy Center staff physician.

 

Bautista-Inset
Self-portrait by a PNES patient, created with help of an art therapist. Anatomical left shows the “normal” self that people see; the right expresses emotional pain, with torn black hair representing the darkness of depression.

Photo courtesy of Sarah Brown, MA, Art Therapy & Counseling