Transcription:
SUDEP (Sudden, Unexpected Death In Epilepsy)

Melanie Cole (Host): Welcome to Back to Health, your source for the latest in health, wellness, and medical care. Keeping you informed, so you can make informed healthcare choices for yourself and your whole family.

Back to Health features conversations about trending health topics and medical breakthroughs from our team of world-renowned physicians at Weill Cornell Medicine. I'm Melanie Cole. And joining me today is Dr. Padmaja Kandula. She's the Chief of Epilepsy and Clinical Neurophysiology and Neurology at Weill Cornell Medicine, and she's here to tell us about something called SUDEP or sudden unexpected death of someone with epilepsy.

Dr. Kandula, it's a pleasure to have you with us today. As we get into it, let's just speak about epilepsy. Give us a little brief overview about how treatment has evolved over the last, I don't know, couple of decades.

Dr Padmaja Kandula: Well, Melanie, thanks for having me this morning. I'm really happy to speak. Epilepsy has evolved quite a bit in the management over the last two decades. I think one of the areas that definitely has blossomed is in the treatment with medications. Since the late 1990s, there's been over a dozen medications with different kinds of mechanisms of action, the way they work.

I think another area that's exploded in the last probably 15 years is the use of devices, not just medication to help treat seizures and uncontrolled epilepsy. Some of these devices are similar to pacemakers for the brain that could be inside the head or even peripheral in the chest that can help control difficult to control seizure disorders. And of course, we have come a long, long way with epilepsy surgery and even minimally invasive surgery using laser treatments, which are fairly new in the last 10 years.

And I think lastly, one of the areas that's very interesting is how to adapt dietary treatments into epilepsy management. And one of those areas is not just the ketogenic diet, which is a medically indicated diet. It's a bit tough to follow, but there's also modifications of that diet similar to a modified Atkins diet, which I think many people are a bit more familiar with as well.

Melanie Cole (Host): I find that aspect of what you do interesting as well, Dr. Kandula. Now, people think of epilepsy, they think of seizures, that seizure aspect of this condition. So, tell us a little bit about that. Could we predict them? Do seizures have to do with what we're talking about today? Because you're going to tell us after about what SUDEP is. Is it related to seizures? Do some people have many of them? Tell us a little bit about that aspect of this condition.

Dr Padmaja Kandula: SUDEP, as you mentioned before, sudden unexpected death in epilepsy is quite rare, but it's an important topic just by nature of the problem. Seizures can happen in isolation. So if you have a seizure, one seizure, that does not necessarily increase your risk of SUDEP. However, recurrent seizures, and this is what we're talking about, recurrent seizures are no longer a seizure that now equals epilepsy. And there are individuals that have well-controlled epilepsy or a seizure disorder on one medication and they don't have any anymore, that's about two-thirds of the population. However, about a third of people are not well controlled for various reasons, and that's that population that we're going to be talking about right now, the population that's not well controlled, and they're at risk for this entity. When we say not well controlled, they're not well controlled in terms of frequency of the seizures, so there are different kinds, the more severe type, the less severe type, and also uncontrolled in terms of the more severe type, having more severe seizures rather than the smaller type of seizures. And I can definitely outline what those are, but that's what we're talking about here today.

Melanie Cole (Host): So, I would like you to outline what those are and what do we know about those more severe seizures and they're linked to complications that are not seen in other aspects of this condition, as you were just mentioning, and what we know about any of the underlying causes of these.

Dr Padmaja Kandula: So seizures, you know, there's a broad category. But to just think of it simply, there's two major kinds when we're talking larger seizures, and this is what people, frankly, are very concerned about. These are the ones that have what we traditionally think about with a lot of movement or motor component. They're very violent, people shake, convulse and these are the types of seizures that put you at risk for SUDEP. And the reason they put you at risk for SUDEP is what happens during these larger motor seizures. People have a violent stiffening, which we call the tonic phase, and then they have a clonic phase. So, they're very well known as tonic-clonic seizures or, in lay terms, grand mal seizures, which that terminology is still used. But the tonic portion of the seizure is the stiffening, so the muscles stiffen. And what accompanies that is then violent contraction. So during this time period, there's several changes that are going on in the body. First of all, breathing is altered and people can actually stop breathing. These are called pauses of breathing or apnea, and that's very dangerous.

The other problem that can occur during this time is the body is in overdrive. And blood pressure can go up, heart rate goes up, and there can even be heart rate disturbances or what we call arrhythmias in folks who generally normally don't even have a heart disturbance. So, the combination of heart disturbances and the combination of irregular breathing or even frankly absence of breathing for a period of time is what puts people at risk during these larger seizures. And that actually can contribute to SUDEP risk. We have the smaller seizures, and I hate using the word smaller to kind of say they're not important, but they're smaller in the sense that they don't have the same level of motor component. So, these don't have the motor component, they're not as violent, but people lose awareness, they may be confused, that's also a safety concern, but you don't have the same type of cardiac and breathing issues that you might have with the larger, what we call tonic-clonic seizures. So, that's a definite differentiating point. The tonic-clonic seizures, the larger ones, do put you at higher risk of having SUDEP.

Melanie Cole (Host): That was an excellent explanation. You're a very good educator. So as long as you're talking to us about predictive diagnoses, what do you do if you know that someone has those higher risks, if they have those more severe seizures, they have multiple ones? Is there any way that you can say, "Okay, now let's try and reduce this risk"?

Dr Padmaja Kandula: Yes, the goal of any patient and any doctor in the patient-doctor relationship is to actually reduce risk or eliminate it if that's even feasible, that's actually the best course of action. So if we do know the individual has these larger seizures or these tonic-clonic seizures, the goal is to eliminate that so they don't have any. That can be done using medications. And sometimes medications aren't enough and we end up having to use non-medical therapies, some of which I discussed briefly and touched on earlier, such as devices or diet or surgery, whether it's minimally invasive or open. And this is really, really important to emphasize with a patient. Having these generalized tonic-clonic seizures even to a year puts you almost at a five times increased risk of SUDEP. And if you have more than three in a year and larger amounts, that puts you almost at a 15 times increased risk of SUDEP, which is substantially higher than other patients with well-controlled seizure disorders. So, that's very important. So, we can predict someone who may have this risk based on how often the more violent seizures are occurring, and also how frequent other seizures are occurring too. We also don't want to be dismissive of the less violent ones. That puts you at risk, but not maybe as significant as a risk. So, we do want to to actually control both seizure types.

And the other risk factor really is a duration of a seizure disorder. So, the longer something persists and it's not well controlled, also puts you at this risk of SUDEP. So if we know somebody has a more violent seizures, more increased frequency of seizures over time, we definitely know this trend and those category of patients we counsel at the beginning how we can prevent SUDEP and the best way is really seizure control.

Melanie Cole (Host): So then, highlight for us the services that you offer at the Epilepsy Center of Weill Cornell Medicine. Tell listeners what you do there. The multidisciplinary approach. Tell us about your team and how you work with patients and their families to reduce this risk and get their epilepsy under control.

Dr Padmaja Kandula: I think first thing that we do is we have the discussion. It's not an easy discussion to have, but we're talking about the individuals that obviously have uncontrolled seizures. Both the bigger and the small ones, medically resistant seizures that maybe are difficult to control. We also have individuals where they may not be so compliant, they're not taking the medications for some particular reason, either side effects, fear of the medication, forgetting. So, we have the discussion to emphasize taking them consistently. We also emphasize getting good sleep and being compliant with not drinking excessive amounts of alcohol because that is a neurotoxin at the end of the day, if you take too much.

So there's a team of us, the physicians, and also the rest of the team, which includes our nurses and our nurse practitioners. And we do the education, we have the talk, we do the education to reduce the risk factors. That's the number one step. Then, identifying what we can do to improve compliance, improve sleep, improve lowering the alcohol amount, that's a discussion we have with the patient. Sometimes the sleep issue is actually related, not just to a behavioral problem. It actually may be a sleep disorder, such as sleep apnea. So, we do screen for that as well. And if somebody screens positive for that, you know, there's treatment for sleep apnea, which can improve sleep. And if it improves sleep, it actually can improve your seizure control as well.

So after we have the initial discussion, then the medications become important. And so in conjunction with our nursing staff and our nurse practitioners and myself, we go over the different medications that are available and what people have tried or not tried. There's a lot of new medications that come through the Food and Drug Administration every few years. So, we outline what's been tried, what hasn't been tried, new drugs with a different or novel mechanism of action. And if someone is not responding to medication, then we have the discussion of other options such as what I discussed earlier. So, we do go over the peripheral stimulators and the brain stimulators that are either in the deep brain or superficial brain. And that requires obviously a lot more workup. So, we do rely on additional staff and additional team members to help us with that. Oftentimes, we do rely on the neuropsychologist, so they test the patients to see how well they're doing, how they're functioning objectively. Many patients when they have epilepsy over a long period of time develop other deficits. Some of it is a memory problem, sometimes it could be attentional or focus problems. So, the neuropsychologists are really key in outlining what weaknesses might be there, but also what relative strengths there are so they can educate the patient and we can also decide based on some of the profile on how well they're functioning, what device or surgical candidate they might be.

And then, the next kind of step is to talk to our friendly neurosurgeons who are excellent and help us also decide surgically what might be the safest and most effective plan for the patient. Sometimes that will include putting in a device either peripherally or within the brain or sometimes, if the area's easily targeted, we actually can take out that area or tissue safely without affecting any other structures, and that may be the best course of action. At times, if somebody is hesitant with a more open approach that has a bit more risk but is more effective, we can try minimally invasive laser treatment. That's not a device or a system that's appropriate for everybody, but it can be for certain targeted individuals that have a very small area that's easily accessible. So, there's a lot of options there.

We do also work with our neuroradiologist, and they're key in actually identifying the focus. Sometimes the focus is very small. It may be a developmental problem that has been there and has been inactive and now is becoming irritative, or it might be a new type of problem that has contributed to the seizure disorder, whether that's a brain tumor that is benign or it is trauma, head trauma that's contributing to the seizure disorder or tissue that's scarred down that someone might have had earlier in life and now is becoming a problem. They're very good at finding techniques to identify the focus, and sometimes these techniques go just beyond an MRI. There are other types of testing that are functional testing that look at the brain in a different way, such as a PET scan or other kinds of imaging. And advanced imaging is really done at these level four centers, where we can actually do the advanced techniques fairly easily and give the patient the report and find an area that maybe traditionally some other types of traditional imaging may not pick up on.

Melanie Cole (Host): Wow. Such a comprehensive program. Dr. Kandula, thank you so much. That was so informative. And thank you again for sharing your expertise. And Weill Cornell Medicine continues to see our patients in person, as well as through video visits, and you can be confident of the safety of your appointments at Weill Cornell Medicine.

That concludes today's episode of Back to Health. We'd like to invite our audience to download, subscribe, rate, and review Back to Health on Apple Podcast, Spotify and Google Podcast. And for more health tips, go to weillcornell.org and search podcasts. And parents, don't forget to check out our Kids Health Cast. I'm Melanie Cole. Thanks so much for listening today.

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