Sudden, unexpected death in epilepsy (SUDEP) has been recognized for years and is recently better understood. The risk of sudden death is 20 times higher in people with epilepsy than in the general population. Patients with intractable epilepsy (who do not respond to medications) have an estimated 35% lifetime risk. In the US, 3000 cases of SUDEP occur each year. Risk factors are early age of onset, young adult age, poor seizure control, especially grand mal seizures. Some of these factors are modifiable.
Should patients and family be informed of this risk? Would it cause them needless anxiety? The answer to this question is not clear. Most likely, patients with difficult-to-treat epilepsy who are at high risk should be informed. SUDEP can occur in epilepsy monitoring units. It is triggered by a grand mal seizure, followed by rapid breathing, and then cardiorespiratory collapse. There are urgent needs for methods to predict and prevent sudden death in these patients.
For more information, see Lancet Neurology, 2015, page 125.
Jack Florin, MD
To schedule an appointment send us an email or call us at (714) 738-0800