Q: M y 19 year old niece died from a grand mal seizures in her sleep. Does that happen a lot? And can anything be done to prevent this from happening? She was on medications for seizures. Thank you.
A: There is an entity called "sudden unexplained death in epilepsy" (SUDEP) that has recently received much attention in epilepsy care. It is death occurring in persons who do not seem to have any other medical problems to explain the death, other than epilepsy. The incidence is highest in persons with uncontrolled epilepsy and thought to occur in about 3 to 6 in 1000 persons with uncontrolled epilepsy per year.
We do not understand why SUDEP occurs or how to prevent it. Some research groups are beginning to study this, including ours. Some theories propose that the seizures cause heart rhythm abnormalities or abnormal regulation of vital functions. Clearly this is an area that needs much more research.