Sudden Unexpected Death in Epilepsy: Should I Be Concerned?

ALTHOUGH MOST PATIENTS WITH epilepsy live long, healthy lives, sudden unexpected death in epilepsy (SUDEP) is a serious concern affecting one in 1,000 adults and one in 4,500 children with epilepsy. The exact cause of SUDEP is unclear.

Most people are found dead in bed, often face-down.  Though few people witness a seizure immediately preceding death, that is not required for a SUDEP diagnosis. Researchers believe that some seizures can cause an irregular heart rhythm leading to death, while others point to suffocation as the cause of death.  

The greatest risk factor for SUDEP is frequent seizures, particularly generalized tonic clonic or grand mal seizures. Although the risk of SUDEP is considered quite small in most people, a recent study estimates that having three or more tonic clonic seizures within a year increases the risk of SUDEP 15-fold. Other risk factors involving abrupt cessation of seizure medications, not taking seizure medications as prescribed, being a young adult between 20 and 40 years old, and having an intellectual disability with an IQ of less than 70. 

At this time, no singular measure can eliminate all risk of SUDEP.  e most effective measure is to get the best possible control of your seizures.  is involves working closely with your health care team, taking your medications as prescribed, and considering all possible treatment options for your epilepsy (including medications, surgery, medical devices, dietary therapy, etc.). Good lifestyle habits such as getting proper sleep, avoiding alcohol and recreational drugs, and taking medications on time can help avoid breakthrough seizures. Some studies suggest that having someone available to provide assistance during a nighttime seizure may help prevent SUDEP. 

Although it can be scary to consider your risk for SUDEP, discussion of this dangerous condition is important to increase public awareness and promote research. Please consider discussing SUDEP with your epilepsy provider and identify strategies to reduce your risk.