(This blog was originally posted on November 14, 2011)
Sudden death without obvious cause in epilepsy is an uncommon danger that is not often discussed with patients. This phenomenon is known as “sudden unexpected death in epilepsy” (SUDEP). Dr. Orrin Devinsky, Professor of Neurology at New York University, reviewed SUDEP in the November 10, 2011 edition of the New England Journal of Medicine.
Each year, sudden unexpected and unexplained death is reported in fewer than one in one thousand epilepsy patients. SUDEP tends to occur among patients whose tonic-clonic seizures are poorly controlled; it occurs more in adults than in young children.
SUDEP is diagnosed when an autopsy reveals no other known cause for the death, such as drug intoxication, heart attacks, uncontrolled continuous seizures, i.e., status epilepticus, or other identifiable diseases/abnormalities. Many SUDEP incidences involve patients who go to sleep and then are found dead in bed. Most of these cases are thought to occur after a seizure, although this cannot always be proven. It is believed that seizure activity affects the brain’s regulating centers for breathing and heartbeat, which can result in pulmonary edema, a common finding at autopsy in these patients. Pulmonary edema is a congestion of the lungs that can be lethal by impairing breathing.
We still do not know how to prevent SUDEP. Closely following medical advice and treatment guidelines to control seizures seems to offer the most benefit.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. DINGS is his first novel.