November is National Epilepsy Awareness Month (NEAM) and every year, I try to shine a spotlight on different topics related to seizures and epilepsy. You may have read in my previous blog post or elsewhere that 1 in 26 people will develop epilepsy in their lifetime, so it is more common than you might think!
You may be wondering what SUDEP stands for and what it is. SUDEP is an acronym for Sudden Unexpected Death in Epilepsy. It refers to unexpected deaths in persons with epilepsy that are not caused by injury, drowning, prolonged seizure (status epilepticus), or other known causes. There is often evidence of an associated seizure. According to the CDC, there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy but this statistic can vary.
The underlying mechanism is not completely understood at this time. Some abnormalities identified include respiratory abnormalities, cardiac arrhythmia, and attenuation of cerebral function as common peri-ictal (occurring around the time of the seizure) phenomena. At this time, it is felt that the most likely explanation is profound cardiopulmonary depression. The event is often unwitnessed and the person may be found lying face down in bed.
The highest rates of SUDEP have been reported in people between the ages of 20 and 45 years old, in males, and people with childhood-onset epilepsy. It has been described in patients with generalized tonic-clonic seizures (GTCS) and focal epilepsy as well. The highest risk of SUDEP is in patients with GTCS (more than 3 per year). It has not been seen in patients that only have absence or myoclonic seizures. Myoclonic seizures are brief jerks of a body part or whole body and absence seizures are characterized by brief staring spells that may be associated with other signs or symptoms. I will have a blog post on different seizure types in the future since there are many.
Not surprisingly, SUDEP is also seen at higher rates in populations with socioeconomic barriers to care, including lack of employer, lack of access to to medications, and lack of access to appropriate medical providers. Other risk factors include severe epilepsy, treatment with 3 or more anti-seizure medications, intellectual disability, and genetic factors, such as having disorders associated with pathogenic variants in potassium and sodium channels, such as SCN1A.
As a pediatric neurologist, I don’t discuss SUDEP with my patients as early as I should. It is one of the scariest aspects of epilepsy but it is rare in children. However, the risk in children is not zero and these children also grow up to be young adults that are in the highest risk categories. Over the last few years, I have made an effort to discuss this topic with families in one of our first visits if appropriate. I realized that it is best that they hear it from their trusted doctors and not from reading it elsewhere or from other sources on the Internet for the first time. It can also help with prevention.
So what can we do? Although there is no definite way to absolutely prevent SUDEP, there are some things patients and families can do. We can work to achieve the best seizure control possible, which includes not skipping medication and reporting breakthrough seizures accurately. Seizure detection devices, such as watches, the presence of another individual in the bedroom, or using monitoring/listening devices in the room of a person at risk for SUDEP may help. Research is ongoing to help better understand SUDEP and hopefully ways to prevent it in the future.
Finally, the most important part of all is to continue to raise awareness about epilepsy and working for a cure!
References
Pathak SJ, Yousaf MIK, Shah, VB. Sudden Unexpected Death in Epilepsy. [Updated September 2022 Sep 21]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing:2022 Jan.
Epilepsy Foundation. SUDEP. www.epilepsy.com. March 29, 2022.
Centers for Disease Control and Prevention (CDC). SUDEP. www.cdc.gov. September 30, 2020.