Framing the discussion about epileptic seizures

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Patients who have generalized tonic-clonic seizures—also called convulsions—and their caregivers now can have some peace of mind in regard to sudden unexpected death in epilepsy (SUDEP).

SUDEP develops in rare situations: 1 in 4,500 children and 1 in 1,000 adults are shown to be affected by SUDEP. However, doctors now can give patients a clearer idea of their risk of experiencing SUDEP. In turn, patients or caregivers shouldn’t hesitate to bring up the risk to their doctor and discuss actions that they can take to prevent SUDEP.

“Practice Guideline: Sudden unexpected death in epilepsy incidence rates and risk factors,” which was published April 2017 in the journal Neurology, reports that controlling seizures through the use of medication or surgery might reduce the incidence of SUDEP significantly.

Dr. Cynthia Harden, who is the lead author of the report and a professor of neurology for Mount Sinai Health System, says these statistics help to frame a discussion that a doctor and a patient can have to approach the distressing idea that a person who has epilepsy is at risk for SUDEP if he/she has experienced at least three generalized tonic-clonic seizures, meaning that he/she lost consciousness and experienced jerking movements and stiffened muscles.