SUDEP
This is a pneumonic that stands for Sudden Unexpected Death in Epilepsy.
Defined: Sudden unexpected witnessed or unwitnessed, nontraumatic, and nondrowning death in patients with Epilepsy with or without evidence of a seizure and excluding documented Status Epilepticus (seizure lasting longer than 30 minutes) in which post mortem examination (autopsy) does not reveal a toxicological (legal or illegal drug cause) or anatomic cause for death (for example, heart attack, cancer trauma). In other words no other causes other than death following a seizure.
SUDEP has long been recognized as a clinical entity, yet many epilepsy patients as well as medical professionals are unaware of the phenomenon. This leaves bereaved families of SUDEP asking the question “Why weren’t we told?” There is still controversy among professionals caring for people with Epilepsy whether to inform patients or not. Some Doctors advocate avoiding the subject to avoid alarming the patient. Many are willing to discuss mortality issues but feel they have insufficient time in a clinic visit to do so. Many patients are getting their information via the internet and social networking sites. There is a grassroots movement to get the word out at cureepilepsy.org. The position of epilepsy.com is that of open information and disclosure in this area even when the subject is difficult. When people in the public eye die from Epilepsy, there is more media exposure, which may increase anxiety about dying from Epilepsy but it also may help spread awareness about the incidence of SUDEP. Each death from Epilepsy is significant.
A literature search reveals that mortality rates in the epilepsy population are approximately 2 times higher than the general population. There is mounting evidence that the risk of dying is increased in epilepsy patients whose seizures are not controlled by available treatments (Neurology Today). It is clear that there needs to be more research into the pathophysiology of SUDEP. People with Epilepsy can die for several reasons. Experimental evidence points to seizure provoked heart rhythm abnormalities, breathing problems and brain swelling during a seizure as possible cause (Robert S. Fisher, M.D., Ph.D. Editor- in- Chief, epilepsy.com). One recent study, by Jeffery Noebels, MD, PhD and Alice Goldman, MD, PhD, Baylor College of Medicine, Houston, has established one preventable cause of SUDEP, an electrical abnormality in the heart. It is exciting to see new research clarifying what was once only suspected, but there is still much to be discovered.
What can people do to minimize the chances of dying from a seizure? Be aware of risks and take sensible precautions. Control your Epilepsy as best you can by obtaining proper rest and taking all medications as prescribed. Maintain a healthy lifestyle with good nutrition, and exercise. Be aware of safety issues to minimize the risk of injury during seizure. If you have depression or thoughts of suicide seek help National Suicide Prevention Lifeline 1-800-273-8255 (don’t suffer in silence).
Risk Factors for SUDEP according to The Report of the American Epilepsy Foundation Joint Task Force on Sudden unexplained Death in Epilepsy, September 10, 2008 include:
•Uncontrolled seizures (especially generalized tonic-clonic seizures)
•Long epilepsy duration
•Subtherapeutic antiepileptic drug (AED) levels and the number of AEDs used
According to Linda Coughlin Brooks RN BSN CT:
Devices for monitoring heart rate, oxygen saturation, and body movements are available, but reliability of these devices in detecting seizures or in identifying high-risk persons is unproven. Further studies are needed to determine whether these measures have a role in the prevention of SUDEP.
