My website’s Blog # 13 of November 14, 2011 discussed Sudden Unexplained Death in Epilepsy (SUDEP). We still do not know how to prevent this phenomenon or why it occurs. SUDEP is reported in fewer than one in one thousand epilepsy patients and it tends to occur among patients whose tonic-clonic seizures are poorly controlled. SUDEP affects adults more than young children. The most beneficial medical advice to prevent SUDEP is to closely follow medical recommendations and treatment guidelines to control seizures.
SUDEP is diagnosed when an autopsy reveals no other known cause of death such as drug intoxication, heart attack, uncontrolled continuous seizures (status epilepticus) or other identifiable diseases/abnormalities. Common scenarios involve epilepsy 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.
New information found a significant association between SUDEP and sleeping on one’s stomach, i.e., the prone position. (1) The researchers conducted a literature review and documented 253 SUDEP cases. They found that 73% of the deaths occurred in individuals discovered dead and on their stomachs in bed. There was no evidence that a convulsion had occurred, i.e., no incontinence nor tongue/lip biting. Twenty-seven percent were found dead in other sleep positions. People younger than 40 were four times more likely to be found dead in bed on their stomachs than older individuals. It is not known why SUDEP is associated with this sleeping position nor why it is less likely to occur in people over 40 years of age.
I suggest patients sew a ball or similar object on the front of their bed clothes that would make sleeping on their stomachs very uncomfortable. This could be considered to further minimize this rare risk of death in epilepsy.
1. Liebenthal JA, Wu S, et al. Association of prone position with sudden unexpected death in epilepsy. Neurology 2015;84:703-709.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available as an eBook, an audiobook and a soft cover.