SUDEP and Seizures at Night

Photo: Dr. Elizabeth Donner

It has long been recognized that SUDEP most often occurs at night.  People who die of SUDEP are usually found dead in bed in the morning.  Most of the time, deaths are not witnessed and frequently, but not always, there is evidence of seizure preceding death.   This observation has led physicians and scientists studying SUDEP to ask whether seizures that occur at night, known as nocturnal seizures, are a risk factor for SUDEP.  If a person with epilepsy has mainly nocturnal seizures, does that increase their risk of SUDEP?

In February 2012, in the medical journal, Epilepsia, researchers from the Netherlands published a study that examines the relationship between SUDEP and nocturnal seizures[1].  Dr. Robert Lamberts and colleagues compared the seizure patterns of 154 people who died of SUDEP to the seizure patterns of 616 people living with epilepsy.  The researchers found that the people who died of SUDEP were more than 3 times more likely to have a history of nocturnal seizures.  Also, they found that the people who had a SUDEP occur at night were more likely to have nocturnal seizures than those people that had a SUDEP during the day.  You might wonder whether having seizures at night is just a marker for people with more frequent seizures of all types, which we already know is a risk factor for SUDEP.  The researchers considered this as well and they found that, even when they took in to account the overall frequency of seizures, having seizures as night still proved to be a risk factor for SUDEP.

Why do seizures at night increase the risk of SUDEP?  Unfortunately we don’t yet know the answer to this question.  It may be that the heart and breathing system of a sleeping person are more vulnerable to the effect of seizures.  It is also possible that when the brain is asleep before a seizure starts it has more difficulty recovering from the effects of that seizure and this results in a slowing of the heart rate and breathing, and sometimes death.

What this study does tell us is that people with nocturnal seizures need to work even harder to reduce the frequency of their seizures.  This includes regular appointments with their healthcare provider, taking medications as prescribed and identifying and avoiding triggers for seizures.  And if medications are not working to control seizures, all people with epilepsy need to ask their neurologist about other treatments, such as surgery.
By studying the risk factors for SUDEP we will learn not only more about the underlying causes of SUDEP, but also about the best way to prevent it.

In this column I usually report on SUDEP research, but this time around I can’t help but comment on something from the popular press.

Lil Wayne Talks About His Epilepsy. Do You?

Last month, just 2 days after Purple Day, Lil Wayne told Los Angeles radio station Power 106 that he has epilepsy.  Earlier in the month, the established hip hop artist was admitted to an intensive care unit for treatment of seizures.  Lil Wayne explained that he has a history of seizures due to epilepsy and he believes the recent increase in the frequency of his seizures is due to “stress, no rest, overworking myself”.  He also said that he makes sure that the people around him know about his epilepsy and what to do if he has a seizure.

I applaud Lil Wayne for talking publicly about his epilepsy.  It is not common to find celebrities willing to talk about seizures in themselves or their family members.  In fact, it seems that epilepsy is often shrouded in a cloud of silence.  What is it about epilepsy that makes people reticent to talk about it?  Most studies suggest that it is the fear of stigma that makes people with epilepsy keep their seizures a secret.  At the same time, studies show that the more people know about epilepsy, the less likely they are to discriminate against people with epilepsy.

So go ahead and do like Lil Wayne, talk about your epilepsy and help reduce stigma.  Just talk about it.

  1. Lamberts, RJ et al.  Sudden unexpected death in epilepsy: people with nocturnal seizures may be at highest risk.  Epilepsia, 2012 Feb;53(2):253-7.

Dr. Elizabeth Donner is a Pediatric Neurologist at the Hospital for Sick Children, Toronto and Associate Professor at the University of Toronto.  She conducts SUDEP research, is implementing a pediatric SUDEP registry and is a Director/Co-founder of SUDEP Aware.