Epilepsy: A Matter of Life and Death
By Robert S. Fisher, M.D., Ph.D.
On the second day of the new year, the Hollywood couple, John Travolta and Kelly Preston lost their son. Jett Travolta died, reportedly because of a fall caused by a seizure. Jett was known to have epilepsy. When a tragedy happens to a celebrity, media coverage is extensive, and people with epilepsy and their families worry: what are the chances that this will happen to me?
Epilepsy more than doubles the risk of dying. Since a person’s risk for death normally is low, a doubled risk is still numerically relatively low. Most people with epilepsy do not die from their epilepsy. In one large prospective study (Shackleton, Journal of Neurology, Neurosurgery & Psychiatry 1993, volume 56, page 149), the mortality rate was about 1 per 100 person-years (a person-year is the number of people multiplied by the number of years that they are followed), representing a 2.5-fold increase in mortality rate. People with newly diagnosed and controlled epilepsy have lower mortality rates. People with chronic, uncontrolled epilepsy have higher rates. Older and sicker people have a higher mortality, whether or not they have epilepsy.
People with epilepsy can die for several reasons, some of which are not related to their seizures: cancer death, for example. Risks possibly related to epilepsy or seizures include seizure-related accidental injuries, status epilepticus (a seizure persisting for longer than 30 minutes), severe side effects from seizure medications, suicide, and SUDEP. The term SUDEP is an abbreviation for a condition called “sudden unexplained death in epilepsy.” In this condition, a person with epilepsy dies from a seizure, sometimes witnessed and sometimes not, and no other cause than the seizure is able to explain the death. Experimental evidence points to seizure-provoked heart rhythm abnormalities, breathing problems, or brain swelling during a seizure as possible causes. Different causes may operate in different individuals.
Doctors may or may not discuss SUDEP and other mortality issues with their patients. A few advocate avoiding the subject to avoid alarm. Many are willing to discuss possible mortality issues, but have insufficient time in a clinic visit to do so, given other more immediate priorities. The position of epilepsy.com favors open information and disclosure in this area, even when the subject is difficult.
What can people do to minimize the chance of dying from a seizure? First, stay healthy, since good health will help you to survive whatever may happen. Second, control your epilepsy as best you can, with lifestyle measures such as obtaining proper rest and by regularly taking all necessary medications. Third, be aware of safety issues to minimize the risk of injury during a seizure. Fourth, do not suffer depression in silence, especially if you are having thoughts of suicide.
Epilepsy can shorten life, but most of the time it does not. Be aware of risks and take sensible precautions, but do not let the risks put you into a state of constant worry. Consult with your doctor for specific information about your risk factors for injury due to seizures.