Among the 84 blogs I have posted at LANCEFOGAN.COM since
2011, three (#13, #57 and #68) have focused on “sudden death in epilepsy” (SUDEP). Too often, physicians fail to
discuss SUDEP with their epilepsy patients, their families, and their
caregivers because physicians claim that they did not want to impose
unnecessary fear. Other physicians argue that SUDEP disclosure could aid in
improving medication compliance and improved health-life-style compliance. Below
are suggestions to minimize SUDEP.
The cause of SUDEP remains unknown. Patients with
epilepsy are 24 times more likely to suddenly die compared with age-matched
controls. SUDEP is responsible for 2 to 18% of epilepsy-related deaths and is
the most common epilepsy-related cause of death in patients with
poorly-controlled seizures. Eliminating, or at least minimizing, convulsions is
the goal because that has been shown to reduce SUDEP risk. 1
A total of 64 patients with long term epilepsy completed a
survey that was presented by Lucretia Long, MS, RN, CNP, at the 69th
Annual Meeting of the American Academy of Neurology. All participants felt it
was their right to be informed about SUDEP. A third of patients admitted
disclosure frightened them but they still believed it their right to be
informed. SUDEP is most likely to affect those with night-time
tonic-clonic seizures that are poorly controlled. These individuals believed
that SUDEP disclosure would benefit them by encouraging them to be more
medication-compliant. Additionally, disclosure would encourage them to avoid
factors that lower seizure threshold (less sleep, alcohol and illicit drug
use). 2
Most SUDEP occurs in bed where the patient is sleeping. While
medical support, even within 2 minutes following a convulsion, doesn’t always
prevent SUDEP, evidence supports that death is less likely when someone can
rapidly stimulate or reposition the patient. 3 Consider alert monitors
such as devices like baby monitors that can transmit unusual sounds coming from
the patient’s bedroom that would alert others to attend to the patient as soon
as possible and conceivably save lives.
- Dworetzky A. Gaining Perspective on SUDEP. The new guideline. Neurology 2016; 88: 1598-1599
- Williams GS. Neurology Reviews. June 2017, page 13.
- Devinsky O, Hessdorfer DC, Thurman DJ, et. al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol 2016; 15: 1075-1088.
