What is it?
Sudden Unexpected Death in Epilepsy (SUDEP) happens when a person with epilepsy who was otherwise healthy dies unexpectedly This sudden death does not happen because of a known injury, accident, drowning, seizure emergency such as status epilepticus, or another known cause. Although SUDEP has been reported for over 100 years, there has been more interest in understanding SUDEP frequency, causes, and prevention in the last 25 years. Unfortunately, we still do not know exactly why SUDEP happens, but it is likely due to problems with consciousness, breathing and heart function following a seizure which may or may not have been recognized. Each year, SUDEP affects 1 in 1,000 adults with epilepsy and 1 in 4,500 children with epilepsy. It occurs more frequently in people with epilepsy whose seizures are poorly controlled. It is the leading cause of death in young adults with uncontrolled epilepsy. Having generalized tonic-clonic (GTC) and nighttime seizures can increase this risk. People with 3 or more GTCs per year have a 15-fold increase in the risk of SUDEP. Most instances of SUDEP occur at night, a time when seizures are often not witnessed. Some specific epilepsy syndromes, such as Dravet Syndrome, are also associated with a higher risk of SUDEP.
What can I do to reduce the risk of SUDEP?
The best way to prevent SUDEP is to have the fewest seizures as possible. It is important to discuss ways to improve seizure control with your medical professional. If seizures are not currently controlled, there may be other treatment options that can be explored, including surgery, dietary therapy, other medications, and/or neurostimulation devices. You can also reduce the risk of seizures by remembering your medications, taking them on time and as directed, getting enough sleep, and minimizing known seizure triggers, if you have any. For those with frequent GTCs and nighttime seizures, your healthcare provider may discuss the possibility of sharing the bedroom, having an in-room audio or movement monitor, and/or using a seizure detection device. This can help identify whether there are seizures at night and can allow the person to be watched after the seizure to ensure complete recovery. It is important to be aware that seizure detection devices have not yet been proven to reduce the risk of SUDEP.
Why don’t we discuss SUDEP more?
It can be difficult and uncomfortable to discuss SUDEP and other causes of death in epilepsy. Some healthcare providers are worried that discussing SUDEP will cause unnecessary stress and fear, or that it might be overwhelming to the patient/caregivers if it is discussed too soon after the epilepsy diagnosis. It is also difficult to discuss SUDEP when there is so little known about it and some of the evidence is often conflicting. Some providers may feel discussing SUDEP with patients who are at lower risk for SUDEP (such as a person with new-onset epilepsy or a patient whose seizures are well controlled) is not necessary. However, there are at least 2,750 U.S. cases of SUDEP every year. Even if the risk of SUDEP is low, it can still happen. People with epilepsy and their families usually prefer to know about factors that increase the risk of SUDEP or other epilepsy-related deaths. Families should never have to learn about SUDEP after it has already happened. Knowledge is empowering. Knowing about SUDEP risk factors might change how patients and providers manage epilepsy. We encourage everyone in the epilepsy community to learn more about SUDEP and how to prevent it.
The National Epilepsy Foundation offers programs and support regarding SUDEP at sudep@efa.org. The Partners Against Mortality in Epilepsy (PAME) initiative is a program they sponsor with a mission to engage all stakeholders (patients with epilepsy, the bereaved survivors of those who have succumbed to SUDEP, professionals, advocates, and scientists) in the effort to understand, to investigate the causes, and to prevent it from happening. A yearly conference brings these different groups together before the American Epilepsy Society meeting in early December.
References:
EFMN SUDEP guide
Panelli, R. SUDEP: A global perspective. Epilepsy & Beh. 103(2020) 106417
Harden, C., et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. Neurology. 2017; 88: 1674-1680.
https://www.epilepsy.com/complications-risks/early-death-sudep#SUDEP-Resources