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Persons with psychological nonepileptic seizures (PNES) pay a price when they are improperly diagnosed. There is an average of 7 years delay between the onset of seizures and the correct diagnosis of PNES.1 During that time, while they are being treated for epileptic seizures (ES), patients are prescribed antiepileptic drugs (AEDs) that do not treat their disorder. When their seizures do not abate, they are prescribed more AEDs, sometimes to the point of toxicity. They also undergo repeated testing, typically with multiple EEGs and neuroimaging studies.
Over time, the tangible and intangible costs add up for the patient, the medical system, and society. The person with PNES has an estimated $100,000 lifetime cost for diagnostic tests, procedures, and medications.2 Of the 1% of the US population with epilepsy, 5 to 20% actually have PNES. Repeated workups and treatments for what is mistakenly thought to be epilepsy are estimated to incur $100 to $900 million per year in medical services.2 The risk to the health of the person with PNES is considerable. Aggressive treatment to stop the seizure sometimes results in oversedation requiring paralysis and intubation. Other risks are posed by toxic medication levels, pic lines, venous cutdowns, vagal nerve stimulator placement, and evaluations for temporal lobectomy.3 Vocational costs …
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