How To Minimise SUDEP Risk - Sanja Gluscevic, Clinical Centre of Montenegro
Torie chats with neurologist Sanja Gluscevic about SUDEP (Sudden Unexpected Death in Epilepsy) - a critical, often avoided topic! Sanja provides statistics and how to minimise risk factors. Sanja emphasises the need for effective communication between clinician and patient and/or caregiver, plus highlights holistic approaches to minimising SUDEP risk, including managing mood and sleep, and the importance of adherence to medication! Transcription and links to Sanja are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Sanja Gluscevic
“During the first year of the diagnosis, the risk of SUDEP is highest. And that is the time frame that we actually have to talk about it and to decide whether our patient is well with our anti-seizure medication or we have to discuss other strategies.”
01:16 Torie Robinson
Sudden Unexpected Death in EPilepsy - or SUDEP - is something I’ve been at high risk of in the past and I really do wish that clinicians at the time had told me about my risk earlier on in the day! I’ve met other people with an epilepsy for whom the idea of SUDEP is, like, no big deal and doesn’t bother them at all - whilst for other people just mentioning it freaks them out. For parents or caregivers there can be absolute fear of losing the one they love and frustration that they can’t prevent it 100%, and then there can be absolute anger when someone has lost a loved one due to SUDEP and they’d had no idea of their risk and how to help them minimise it.
So, how could or should we educate and talk about SUDEP? It is different for everybody. Today we hear all about it from neurologist Sanja Glusevic!
01:03 Sanja Gluscevic
My name is Sanja Gluscevic. I come from Montenegro. It's a very small country in the Balkans. I'm an adult neurologist and I'm a fellow in epilepsy and clinical neurophysiology.
01:14 Torie Robinson
So, today we're talking about SUDEP: Sudden Unexpected Death in EPilepsy. Loads people get nervous about it and I understand but also, I think we all need to be talking about it so we can minimise our risks right?! So, could you define for us what is SUDEP, exactly?
01:29 Sanja Gluscevic
Yeah, you fabulously said it, actually, it's a Sudden Unexpected Death of a Person with EPilepsy that, let's say typically occurs during sleep without any obvious cause. So, it's a non-traumatic and non-drowning cause of death in an individual with epilepsy and without a cause identified after post-mortem examination. So, SUDEP; when we talk about SUDEP, first we think about the patients who are pharmacoresistant. meaning that patients who are using more than 2 anti-seizure medications in a proper dose for a longer period of time. But the SUDEP also occurs in other, let's say, populations of people with epilepsy.
02:05 Torie Robinson
So when people's seizures are controlled, they can still die of SUDEP.
02:10 Sanja Gluscevic
Yes, but when you talk about risk of SUDEP, we have, let's say, a special population of people with epilepsy that we know are at higher risk of dying from SUDEP. Those are the people who have often generalised tonic-clonic (we call it convulsive) seizures…
02:28 Torie Robinson
Yep.
02:29 Sanja Gluscevic
…that are occurring during the night, nocturnal seizures. Also, if you live alone, because nobody can help when you get generalised tonic-clonic seizure, and of course, if you do not adhere to anti-seizure medication regimen. Those are the highest risks for SUDEP. There are also other risks that are reported in literature, like being male - it also increases the risk of SUDEP. But in overall studies, if we talk about SUDEP and patients with epilepsy and dying in epilepsy, the standardised mortality ratio is 2-3 times higher compared to general population without epilepsy.
03:06 Torie Robinson
And just to confirm; so, people can die as a result of things to do with epilepsy…
03:13 Sanja Gluscevic
Yes.
03.13 Torie Robinson
…that can be identified But it's not… doesn't classify as SUDEP because we know why exactly why they died. Is that right?
03:20 Sanja Gluscevic
Yes, absolutely, absolutely right. As I said, SUDEP: you have to exclude traumatic or you have to exclude drowning, because accidental deaths are unfortunately also quite common in patients with epilepsy. So, one quarter, one third of all deaths in epilepsy are due to SUDEP, but the rest; 70 or 60 or 65% are due to other causes. So, accidental injuries, falling, drowning or car accidents are also quite prevalent. Also, status epilepticus…
03:52 Torie Robinson
Yep.
03:52 Sanja Gluscevic
…(the seizures lasting more than 5 minutes), also, lead to brain damage and unfortunately brain death. Also, the rate of suicide is high among patients with epilepsy. So, when we exclude all of these other causes, we have unfortunately the biggest cause is actually SUDEP.
04:08 Torie Robinson
So, what are the statistics, please? Because we don't want people to think half of people with epilepsy die of SUDEP or other causes. That's not the case. What are the statistics?
04:17 Sanja Gluscevic
Okay, what we have from the statistics is that 1 in a thousand patients per year will die of SUDEP. So, it's not common, but it's there. For the children it’s 1 in 4,500 children will die of SUDEP. There are populations of patients with epilepsy where this risk is closer to 0% and there are patients that their risk is actually 1%. Those are the pharmacoresistant patients that have hard to treat epilepsy, so, they have the highest risk. If they have frequent seizures, nocturnal seizures, epilepsy that is not well controlled, then they are at an increased risk of SUDEP.
04:55 Torie Robinson
So, how do we get people to look at it more from the perspective of - and this is how I always explain my thoughts about it - is; when I'm crossing the road, I look both ways and I listen (so, I'm trying to identify risk), then I cross the road. But I still know that I might die, I might get run over by a car, but I do it anyway. So, I've minimised my risk. How do we... how are we able to explain that to people with epilepsy - and families as well…
05:24 Sanja Gluscevic
Mmm-hmm, yeah.
05:25 Torie Robinson
… in that sort of way, so they're not automatically really frightened of the idea of SUDEP?
05:30 Sanja Gluscevic
I always say education, education, education. We as physicians, we actually are the first respondents to tell our patients what they can do. Because there are actually several myths about SUDEP, I would really like to address them. First of all, a lot of patients did come really frightened about SUDEP and they were, like, so desperate telling me “Oh, but there is nothing I can do to prevent my death because of epilepsy!”, which is absolutely not true! So, we have to educate our patients. So, if you, I always talk about SUDEP (which is not very popular and it's not common practice) about SUDEP on our first visit, because I don't know if a patient will return again to me or to somebody else. So, I always talk about SUDEP on our first visit, (once we have a diagnosis of epilepsy). And I always tell my patients, I always tell them first what SUDEP is, what the statistics say, and what are the risk factors. And then I sit with them and we elaborate every single risk factor that maybe they have. And then I always like to call it a plan for mitigating the risk of SUDEP. So, if I have a patient that has frequent nocturnal seizures, it is a big red flag. And the first question is, I always ask is “Do you live alone? Because it's very important in those first minutes when people –have nocturnal seizures, just to shake them, to roll them on a side because that can prevent them dying from SUDEP, then I always ask them “Okay, do you take your drugs regularly?” - because you're all humans, it happens that we just forget about it. I always tell my patients, I'm not a judge, I'm not judging you at all. It happens. So it's very important for patients to be adherent to medication. Maybe we are a bit boring, always asking “Okay, do you take your medication regularly?” but it is very, very important. The one thing that statistics also tells us is that (in very, very big studies) is that if you had, for example, 1 generalised tonic-clonic seizure a year before, you’re twice as likely to get SUDEP on that year. If you have 3, your risk is 15 times more. So, the main question for us as epileptologists is to minimise the number of convulsive seizures. And if we cannot do that, then we discuss our options with our patients. During the first year of the diagnosis, the risk of SUDEP is highest. And that is the timeframe that we actually have to talk about it and to decide whether our patient is well with our anti-seizure medication or we have to discuss other strategies because anti-seizure medications are absolutely essential. is like our first weapon we use against epilepsy,
08:28 Torie Robinson
“Weapon”, haha!
08:29 Sanja Gluscevic
“Weapon”! But there are also other options. There is surgery and there are also neuromodulation techniques. Of course, there is a big burden on caregivers because a lot of patients, a lot of the time are not aware of their seizures - especially nocturnal seizures. So, there are a lot of studies on caregivers and they really have a burnout, because… I mean, both the patients and the caregiver are really frightened when we talk about SUDEP, so, they're constantly anxious. We have both anxious sides. And if you educate them and if you tell them “Okay, you don't have generalised tonic-clonic seizures, you don't have nocturnal seizures, you're taking your medication regularly, so, you're fine. Your risk is close to zero.”. But if you have patients who have all these red flags, then you have to remind them more regularly to ask them on every visit “Okay, how were your seizures controlled for the past 3 months? Did you take your medication regularly?”.
09:24 Torie Robinson
So, other ways I've learnt, over the years, to minimise SUDEP risk are also, it's beyond medication, right? It's also, looking at things like sleep. It's about looking at things like mood and managing those things because if we can improve quality of life, generally speaking, that reduces seizure likelihood, which then reduces SUDEP risk.
09:46 Sanja Gluscevic
Absolutely right Torie. Also, there was, I forgot to mention before, patients who have psychiatric morbidities, they're also at increased risk of SUDEP. Just, you explained it beautifully and more simply than I did; because you lower your threshold for seizures. And, you know there are also, bidirectional links between mood disorders and epilepsy. So, what is an absolute must in patient epilepsy is to address mood disorders and all the other [symptoms] because epilepsy is so, not just seizures, it's absolutely everything around the patient's life. So, you have to address every single thing that is not good for your patient. Sleep, absolutely, sleep is a necessity. And if you have poor sleep, you're also lowering your threshold, increasing risk of convulsive seizures. So, everything that's, let's say, very, very, very simple, everything that is not good for a patient, for example: fatigue, depression, poor sleep, hygiene, and even behavioural lifestyles. For example, if you drink a lot of alcohol, I mean, when you say “Alcohol and epilepsy” “Ooof…!” - this is the first reaction you get, but of course you can drink small amounts of alcohol…
11:04 Torie Robinson
Some people, it depends on the person, right? Some people can, some can't…
11:06 Sanja Gluscevic
Absolutely, some people absolutely can't, but that is why I say you have to talk to your epileptologist, because every patient is different and we are all humans. When we say “Okay, people with epilepsy can live [a] long life with the medication… but it's not very easy to be compliant(!); because if you cannot drink alcohol socially (rarely, let's say), if you have to go to bed every day in approximately the same time, sleep approximately the same hours…
11:38 Torie Robinson
It's hard!
11:40 Sanja Gluscevic
It's very hard. So, let's just humanise that and say “Okay, you can do it sometimes, very small amounts, very rarely when your epilepsy is at the best.”. So, when you manage all the things together (which is also very hard(!)), you really, really minimise the risk of SUDEP. But I personally believe that mood morbidities are the essential part of that. So you don't get anything if you have perfectly controlled patients who are depressed or perfectly controlled patients who is sad because he cannot go out whenever he wants. So, you have to address all these issues…
12:19 Torie Robinson
Mm-hmm.
12:19 Sanja Gluscevic
…and then you minimise the risk. And talking precisely about SUDEP, you have to have, I'll say a plan how to reduce it.
12:29 Torie Robinson
Thank you to Sanja for being so candid and for sharing with us statistics and powerful methods to help reduce SUDEP risk - beyond solely drug adherance - but through optimising people’s mental health, their sleeping patterns, minimising alcohol consumption, and suchlike.
Check out more about Sanja and her work on the website t-or-i-e robinson.com (where you can access this podcast, the video, and the transcription of the entire episode) all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode, subscribe to our channel and so as to get more people learning about the epilepsies!
See you next week!
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A dedicated neurologist and epilepsy and clinical neurophysiology fellow, Sanja Gluscevic is currently completing her PhD in epilepsy while pursuing a Master's in multiple sclerosis.
As a member of the ILAE YES Advocacy Task Force, Sanja actively works to raise awareness and improve the lives of those affected by the epilepsies.
Sanja is also a vice chair of the European Charcot Foundation and ambassador for both EAN neurology and brain health and the Sumaira Foundation.
Beyond her professional achievements, Sanja is also a proud mum of two.
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