Blog #85: More on Death in Epilepsy: What to Do

            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 69^th 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.

1.  Dworetzky A. Gaining Perspective on SUDEP. The new guideline. Neurology 2016; 88: 1598-1599
2. Williams GS. Neurology Reviews. June 2017, page 13. 
3. Devinsky O, Hessdorfer DC, Thurman DJ, et. al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol 2016; 15: 1075-1088. 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.