Management of Psychogenic Non-Epileptic Seizures (PNES)
The cornerstone of PNES management is delivering a clear, candid diagnosis to the patient followed by cognitive behavioral therapy, while discontinuing unnecessary antiepileptic medications. 1
Initial Diagnostic Communication
Communicate the diagnosis directly and sympathetically to the patient, acknowledging the involuntary nature of the episodes. 1 This conversation should occur as soon as video-EEG monitoring confirms the diagnosis, emphasizing that:
- The episodes are real and not being faked 1
- They represent a conversion disorder—an external somatic manifestation of internal psychological stress 1
- This is distinct from malingering or intentional deception 1
- The condition is treatable with appropriate psychological interventions 1
The ACC/AHA/HRS guidelines give this approach a Class IIb recommendation, noting that patients benefit from being informed in a clear but sympathetic manner 1. While the evidence level is limited (C-LD), this represents the consensus approach from major cardiology societies 1.
Primary Treatment: Cognitive Behavioral Therapy
Cognitive behavioral therapy (CBT) is the recommended first-line treatment for PNES. 1 The ACC/AHA/HRS guidelines assign CBT a Class IIb recommendation based on evidence showing:
- One randomized controlled trial demonstrated a non-statistically significant trend toward improvement at 3 months 1
- Uncontrolled studies suggest psychotherapy, particularly CBT, provides benefit in conversion disorders 1, 2
- Recent evidence from 2022 confirms psychotherapeutic modalities remain powerful instruments to empower patients and reduce seizure frequency 2
Medication Management
Discontinue antiepileptic drugs (AEDs) in patients with pure PNES without comorbid epilepsy. 3, 4 Key considerations:
- Many PNES patients have been incorrectly diagnosed with epilepsy and treated with anticonvulsants for years (mean diagnostic delay: 7 years) 3
- Continued AED use exposes patients to unnecessary side effects without benefit 4
- Pharmacotherapy has no demonstrated benefit for PNES itself 1
- However, treat comorbid psychiatric conditions (depression, anxiety, PTSD) with appropriate psychotropic medications as indicated 3, 5
Critical Caveat: Dual Diagnosis
Be vigilant for comorbid epilepsy, which occurs in 10-30% of PNES patients. 3, 4 This "dual diagnosis" scenario requires:
- Maintaining AEDs for documented epileptic seizures while pursuing psychological treatment for PNES 4
- Video-EEG monitoring is essential to differentiate which events are epileptic versus psychogenic 3, 5
- One in four to five patients admitted to video-EEG units with "refractory epilepsy" actually have PNES, representing "pseudo-refractory epilepsy" 4
Multidisciplinary Approach
Neurologist involvement must continue post-diagnosis alongside psychiatric care. 3 The management structure should include:
- Ongoing neurologist follow-up to monitor for any epileptic seizures and manage the neurological aspects 3
- Psychiatric evaluation and treatment for high rates of comorbid conditions including depression, anxiety, somatoform symptoms, dissociative disorders, and PTSD 6, 3, 5
- A biopsychosocial approach balancing predisposing, precipitating, and perpetuating factors is preferred by neurologists and psychologists managing PNES 7
Realistic Outcome Expectations
Seizure freedom may not be achieved in all patients, but quality of life can be substantially improved. 2 Important prognostic information:
- Even after correct diagnosis, a high proportion of patients continue to have seizures and disability 3
- Nearly half of patients who become seizure-free remain unproductive 3
- Many continue to have symptoms of psychopathology including other somatoform, depressive, and anxiety disorders 3
- Quality of life improvement, not just seizure cessation, should be the treatment goal 2
Common Pitfalls to Avoid
- Do not rely on biomarkers: Neuron-specific enolase, prolactin, and creatine kinase are unreliable for differentiating PNES from epilepsy 8, 6
- Do not assume psychiatric referral alone is sufficient: Continued neurologist involvement is essential 3
- Do not delay diagnosis: The average 7-year delay between symptom onset and diagnosis leads to unnecessary treatments and worsened outcomes 3
- Do not miss the 20-30% of "epilepsy center" patients who actually have PNES: Video-EEG monitoring is the gold standard when clinical uncertainty exists 6, 5