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A substantial proportion of patients seen in epilepsy clinics – about 1 in 5 in an outpatient setting, and 1 in 3 in an inpatient monitoring unit – experience seizures with nonepileptic etiology. Many of these patients may not have a confirmed, correct diagnosis for extended lengths of time, which can have the unfortunate effect of reducing the efficacy of future treatment. Often, the first clue that a patient experiences nonepileptic seizures is the failure of antiepileptic drugs to control symptoms. When patients have seizures that are refractory to treatment, early assessment to arrive at an accurate diagnosis of seizure etiology is crucial for optimal outcomes. For patients who have nonepileptic seizures of a physiologic etiology, treatment of the underlying cause can often relieve seizures. While seizures cannot be fully eliminated for about 7 in 10 patients with psychogenetic nonepileptic seizures (PNES), evidence-based targeted treatments can reduce the frequency and severity of PNES so that quality of life is improved and unnecessary disability avoided.

Video-EEG Monitoring for Accurate Diagnosis

Jennifer L. Hopp, MD, Associate Professor of Neurology at the University of Maryland School of Medicine, wrote an April 2019 review article in Continuum summarizing the current literature on the best practices for managing nonepileptic episodic events1. Hopp is the Director of the University of Maryland Epilepsy Center at the University of Maryland Medical Center, accredited as a Level IV center by the National Association of Epilepsy Centers, that specializes in treating seizures difficult-to-diagnose or intractable to medical treatment.

The hospital has a four-bed adult inpatient Epilepsy Monitoring Unit that permits the continuous video-EEG monitoring required for accurate differentiation between seizures of epileptic and nonepileptic etiologies. Another two bed unit is expected to open soon as the University of Maryland Rehabilitation and Orthopedic Institute to accommodate additional patients. The unit supports the simultaneous video and EEG with concomitant ECG recording ideal for accurate diagnosis of seizures and includes features such as soundproofed rooms so that patients experience deeper sleep, improving the quality of the data collected during an EEG study. Because even epileptic seizures can be refractory to medical management, the Epilepsy Monitoring Unit can help assess which patients are likely to benefit from definitive treatment such as traditional resection, implanted devices or laser ablation therapy. The center also includes a newly opened EEG laboratory that performs hundreds of continuous video-EEG studies annually; in 2019, 1,213 continuous video-EEG studies and 764 outpatient EEG studies were conducted at the center.

Video-EEG monitoring is the gold standard for diagnosing a seizure disorder. Even in the presence of detailed medical histories and prehospital clinical assessment tools, whether or not an ictal EEG has epileptiform abnormalities is the most accurate basis for diagnosis. While PNES is thought to be caused by a psychological disorder, the etiology of the problem is not fully understood and likely is associated with a variety of risk factors and concomitant disorders. Despite the psychological cause of PNES, neuropsychological testing is not an alternative to video-EEG monitoring to confirm the diagnosis. Rather, because psychiatric disorders are also prevalent in patients with epilepsy, these two tools should be used adjunctively.

About 10% of patients with PNES also have epilepsy and when these disorders occur together, the diagnosis and treatment of each can be more complex. Videos recorded during inpatient monitoring can show patients and caregivers how each kind of seizure presents in a specific patient so they can share more accurate information with the treatment team, which can then adjust seizure medications and/or mental health treatment as necessary.

Treating Nonepileptic Seizures

Once a patient’s seizures are determined to have nonepileptic etiology, their underlying physiologic or psychogenic cause can be addressed. Common physiologic causes of seizures include those of neurologic origin such as migraine, parasomnias, movement disorders and cerebrovascular disorders such as TIA as well as non-neurologic conditions such as metabolic abnormalities, toxic ingestions and cardiac arrhythmias. Syncope, often mistaken for epileptic seizure when accompanied by convulsions, can be of either neurologic or non-neurologic origin and also requires a thorough assessment.

Like other functional neurological disorders, PNES is now known to have a multifactorial and complex etiology, explaining in part why diagnosis is often difficult and drawn out. As crucial as treatment is for patients, treating PNES is also challenging and made more so by delayed diagnosis. Neurologist researchers at the University of Maryland are at the forefront of contributing to treatment guidelines for PNES as a better understanding of this condition emerges. In the Continuum article referenced earlier, Hopp describes how a PNES diagnosis should be explained to patients and caregivers (i.e., be hopeful yet honest and focus on the positive, e.g., the patient won’t require anti-seizure medications), even making recommendations for the terminology used for PNES-related cases (e.g., “seizure” is preferable to “event,” and “pseudoseizure” and “attack” should be avoided).

Targeted treatment strategies for PNES have a real potential to improve the patient’s condition. It is critical that treatment plans be comprehensive, unified and tailored to the patient, best facilitated when patients have a defined treatment provider – most often a neurologist – in their care for PNES. Regular follow-up with a neurologist may be beneficial for long-term outcomes, even though PNES is highly refractory to treatment and about 70% of patients continue to have seizures despite therapy. However, continued follow-up gives patients the best chance of receiving referrals for therapy necessary for improved quality of life.

Patients with PNES require supportive care, and targeted care – primarily in the form of psychotherapy and cognitive-behavioral therapy (CBT) – can reduce the frequency and severity of seizures. CBT is particularly beneficial in helping patients recognize the thoughts that typically bring on a seizure and adjust their mindset accordingly.

Barriers to Treatment for PNES

Issues that prevent patients with PNES from receiving the most appropriate level of care include the lack of a defined treatment provider, often exacerbated by a shortage of providers equipped to handle PNES, and lack of consistent follow-up with neurologists with expertise in diagnosis of this disorder. Patients with PNES often have difficulty in accepting their diagnosis and/or feel a stigma associated with care for mental health. Adherence issues tend to be less pronounced in patients with higher levels of education, those with shorter time from symptom onset to diagnosis, and those with lower scores on somatoform and dissociative assessment scales.

Conclusion

As the medical community’s understanding of psychogenic nonepileptic seizures and other conversion disorders grows deeper, the complex web of biological, psychological and social factors contributing to this therapeutically challenging condition is being recognized. The University of Maryland Epilepsy Center assists clinicians in providing accurate diagnoses for more patients, and continuing research at the University of Maryland and other institutions shows promise for opening new pathways for better therapies and individual management of patients with PNES.

Learn more about the Level IV University of Maryland Epilepsy Center.

1Hopp JL. Nonepileptic episodic events. Continuum (Minneap Minn). 2019 Apr;25(2):492-507. doi 10.1212/CON.0000000000000711.

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