Epilepsy is a chronic disorder, characterized by recurrent, unprovoked seizures. A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar. A brain injury or a family tendency may cause a seizure, but often the cause is completely unknown. In a lifetime, one in 26 people in the United States will develop epilepsy.
The risk of sudden unexpected death due to epilepsy (SUDEP) affects roughly one in 1,000 adults with uncontrolled epilepsy. In children, SUDEP is seen in one in 4,500 with uncontrolled seizures.
Patients with three or more generalized tonic-clonic seizures (GTCS) per year are at a 15-fold higher risk of SUDEP. You and your provider should discuss how to improve seizure control since a reduction in the frequency of GTCS would be expected to have a beneficial effect on risk.
Seizure freedom is the most significant modifiable risk factor in preventing SUDEP, particularly generalized/convulsive seizures. Other modifiable risk factors include adherence to prescribed anti-seizure medications, limiting alcohol intake, continuing to pursue further treatments, and avoiding known seizure triggers including getting enough sleep.
To learn more about SUDEP and to ensure that SUDEP gets the public awareness and research attention it deserves, the Epilepsy Foundation has launched the SUDEP Institute for patient education. Also, the patient can call the American Academy of Neurology (AAN)/American Epilepsy Society (AES) sponsored SUDEP 24/7 Helpline at 800.332.1000.
To schedule an appointment with an epilepsy specialist, call 234.867.6970.
