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A webinar discussing the population at risk for Sudden Unexpected Death in Epilepsy (SUDEP) and what risk factors may be involved. Dr. Elizabeth Donner explores the personal impact of SUDEP, the latest research statistics, and what resources are available to the community. Part of the CURE Leaders in Epilepsy webinar series.

Audience Q&A with Dr. Elizabeth Donner

What are some of the barriers that healthcare professionals have when talking about SUDEP?

One of the big issues has been the fear of healthcare providers that learning about SUDEP, that if they’re patients or parents of kids with epilepsy, learning about SUDEP, that they will actually be causing more harm than good, that the anxiety produced by learning about SUDEP will surpass any potential benefit. But there’s actually been some nice studies about this. There’s really no evidence that learning about SUDEP causes any undue anxiety or ha There has been some qualitative research done by my colleague Rajesh Ramachandran Nair at McMaster University where he’s talked to parents of children with epilepsy and people living with epilepsy about their interest in SUDEP information. They clearly have expressed a need for more information about SUDEP.

There has been a study out of Susan Duncan’s group in the UK that showed that, upon learning about SUDEP, there was no significant change in anxiety or worry related to their risk. That’s probably been the biggest barrier.

Talking about face down position, does this indicate suffocation? If so, are there things that can be done to prevent that?

I want people to think about the fact that when a person is sleeping and they’re in otherwise good health, if they roll over and their face goes into the pillow, and this probably happens to us a few times a night, what happens is, we’re not breathing well. Actually, our brain wakes us up and we roll over. You don’t suffocate while you’re sleeping because your brain has a mechanism to know when you’re not breathing well when you’re sleeping, and you wake up. What might be happening in some SUDEP cases is that, after people have a seizure, and many of you will know that often in the immediate period of time after a seizure, people can be, what we call a postictal state. Quite sedated, unresponsive like they’re in a very, very deep sleep.

It’s quite possible that the brain in that state is unable to respond to the cues that allow us to roll over when we’re breathing into our pillow. We don’t exactly call it suffocation because what’s happening is the effect of the seizure has made it such that the brain doesn’t wake up because the person is face down in their pillow. I hope that answers the question, and I recognize it’s a bit of a complicated explanation. With regards to the more practical side of the question around, well, does that mean that people would be safer if they just slept on their back all the time? There is some newer research coming out that shows that actually some SUDEP deaths people are found on their side or on their back position as well. Even if that was the case, it wouldn’t completely fix the problem, but there’s two important considerations.

One is that when we look at people who are having seizures, and we have the opportunity through our video EEG monitoring to review lots of people having seizures on videotape, we can see that most of the time in a generalized tonic-clonic seizures, the movements of the body causes the person to roll over onto their stomach. Even if you could convince the body to always stay sleeping on the back, it’s quite possible that during a seizure, a person flips over onto their stomach. The other is we move around while we’re sleeping. There are some tricks, different things you can wear and stuff that make it uncomfortable to sleep on your stomach, but even if we were to do that, it’s quite likely that the body flips over during a seizure. Unfortunately, I don’t think that’s been very well developed as a prevention technique.

Are there any wearable devices that could monitor epilepsy and that risk for SUDEP?

Something that gets a lot of attention, for sure, is the advent of all these new epilepsy monitoring devices. There are quite a few devices available to the general public that monitor for seizures. There really is no evidence that these devices actually reduce SUDEP risk. Now, of course, it’s difficult prove that because, practically speaking, you would need to give devices to so many people and then wait to see whether it reduces the risk of SUDEP. What we know about some of these epilepsy devices is that they can alert a caregiver when a seizure occurs. Then, what we need to then extrapolate from that is whether going to a person when they have a seizure, so the person who had the seizure, whether they benefit from the attention of a caregiver in the immediate post seizure period and whether that will reduce SUDEP risk.

I think it’s going to be almost impossible to prove that the devices can reduce SUDEP risk, but I definitely think that the devices have a place in alerting caregivers that a person has had a seizure, and that those can, at times, give peace of mind to caregivers. But we need to be cautious because devices can have both false positive and false negative alarms. Meaning sometimes the devices don’t pick up all the seizures and sometimes the devices pick up all sorts of movements that aren’t seizures and alarming all the time. Also, I’ll remind you that 10 of the 27 pediatric cases that I reported back in 2001, there was someone present with the child when they died. Just because there was someone there, they still are not able to save that life even if we’re alerted to seizures, it doesn’t mean we’re going to be able to save every life, unfortunately.