By Daniel Hoch, PhD, MD
Editor, AAN.com for Patients and Caregivers
Every epilepsy specialist I know has lost someone to sudden unexplained death in epilepsy (SUDEP). Since my practice is almost entirely comprised of patients with epilepsy, my own experience has been especially heart wrenching.
I remember the young man with few other problems and reasonably well-controlled seizures who was found by his parents, apparently having died peacefully in his sleep. I recall the young woman who had frequent seizures and was found dead in her apartment.
In response to these losses, and others, I have started asking people with epilepsy if I should talk about this risk with the newly diagnosed.
At the online community, Braintalk.org and others, I learned that most people feel it's important to know.In November/December 2010 edition of Neurology Now, Dr. Andrew Wilner presents an excellent overview of sudden unexplained death in epilepsy. His article covers all the bases, including perspectives on when to bring the topic up with newly diagnosed patients.
For more information on SUDEP: