Studies show that people with epilepsy are more sedentary than the general population. This is partly due to concerns about having a seizure while playing sports or exercising and the fact that healthcare professionals previously advised against physical activity. Many people with epilepsy, caregivers, and even some doctors are unaware of the research surrounding physical activity for those living with epilepsy. Unfortunately, studies have shown that up to 80% of people with epilepsy exhibit some form of cardiovascular disease 1, and people with epilepsy have a threefold increased risk of sudden cardiac death 2. These statistics suggest the need for more physical activity among those with epilepsy, a fact that is reinforced by recent research.
This free webinar will explain the difference between exercise and physical activity, summarize the health issues faced by many people with epilepsy and discuss who may benefit from physical activity. Viewers will also hear the current consensus among medical professionals on the safety of different types of physical activity and exercise for people with epilepsy. Finally, viewers will learn practical tips for how to safely engage in physical activity for those living with epilepsy.
The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.
1 Verrier RL, Pang TD, Nearing BD, Schachter SC. Epileptic heart: A clinical syndromic approach. 2021;62(8):1780-1789
2 Bardai A, Blom MT, van Noord C, Verhamme KM, Sturkenboom MC, Tan HL. Sudden cardiac death is associated both with epilepsy and with use of antiepileptic medications. 2015;101(1):17-22.
Q&A Transcript
One of the most challenging obstacles to getting enough exercise and activity is the feeling of constantly being fatigued and a sense of being sedated from the antiseizure medications. Is there anything that can be done to address this issue?
One reason why we think that physical activity could be good for people with epilepsy is because of these medication side effects. And there’s been at least one study that I can think of off the top of my head that showed that people reported a reduction in their medication side effects after they started exercising. So my recommendation would be to try not to let it keep you from starting the physical activity. That’s a lot easier said than done. But I think if you can make yourself just start somewhere, like I said, a few minutes a day, you should find that increasing your physical activity, even though it’s going to be hard at first because of those side effects, will probably reduce the side effects that you’re experiencing. And then, therefore, it will kind of just get easier day after day.
The other thing that I’ll say is that it could be worth talking to your neurologist about your medications, because we don’t want anyone to have to live with side effects. And we have over 25 medications for epilepsy now. So, it’s possible that they may be willing to work with you to try adjusting medications and finding a regimen where maybe you don’t feel so fatigued.
Another question came in that relates to a very tragic event that happened very recently with regard to a surfer. This is a surfer who died potentially from seizure while surfing, and this is a very scary possibility.
The person who posed the question also enjoys surfing and has epilepsy. And generally, they feel better physically after surfing and believes that the additional ATP produced in the body might help with brain health. So, I want to get a perspective on that. What are the thoughts on ATP production from exercise? Will it help reduce seizures at all? Are there other things that the body produces during exercise that might help reduce the chances of seizures?
That’s a great question. And that’s all kind of research that we don’t have answers to right now, but they are being looked at. We do have data outside of epilepsy and some from other neurological diseases even, especially in the Alzheimer’s realm, where they’ve looked at what is actually changing in the body when people exercise and how might that be benefiting brain health. So, there are some neurotransmitters that they’ve looked at. Something that comes up a lot is BDNF, which is brain-derived neurotrophic factor, which is thought to increase plasticity of the brain, so kind of improving the health of neurons. But specifically in epilepsy, it really hasn’t been looked at. So, there’s many theories about what could be happening in the brain, different levels of different hormones, and again, neurotransmitters. And it’s probably some combination of all of those things that’s happening, but we don’t have all the answers to that right now.
Here’s a question about weightlifting, which was included in the moderate risk category, but the CDC recommends including strength training two times per week. Can you clarify or share your opinion on this?
Another good point. So, it is definitely recommended to do some weight resistance-type exercise. But of course, that is slightly increased risk in people with epilepsy because of the fact that if you’re lifting a 30-pound weight, or lifting it over your head, if you are to have a seizure, there’s a more significant risk of injury there compared to just walking or running.
And so, as far as I know, there aren’t any official guidelines or recommendations about that. But one thing that I think would be safer if you want to incorporate resistance training and you’re having frequent seizures is possibly using resistance bands, because you can get the same idea, same kind of effect on the muscles as weight lifting, but it’s a little bit safer in that you’re not lifting a weight that could drop, you’re just working with the resistance of the band.
I’m not a personal trainer, so I can’t suggest any specific exercises with the bands. And of course, I don’t know the context of this person’s specific epilepsy, but that might be somewhere to start.
So, should someone try to target a specific level of exertion or increase in heart rate? And along the same lines, can you speak to the idea of too much exercise? So, in this person’s case, they’ve always run marathons, and have become afraid of going too hard and toned it down to half marathons as a compromise, which I still think is amazing. So again, what level of exertion is reasonable?
Another good question and congratulations to that person for being so active. It’s very impressive. And afraid the answer is that there is no one level necessarily. Exercise is one of those things that the more you do it, you kind of buildup gradually. And then, the more that you’re able to do. So, for somebody who’s training to do a marathon, for them to go actually run the marathon doesn’t quite take the same amount of exertion and toll on the body as it would for somebody who hasn’t been training to go run the marathon. That could actually be disastrous for that person. So, there’s not necessarily a level of exertion that is appropriate for everyone or everyone with epilepsy.
I’m trying to think of the best way to answer the question. I think, again, it has to be individualized. But for that person, listening to their body is probably a good way to start. If they’re a marathon runner, they’re probably familiar with the feeling of a good type of hard workout and a bad type of hard workout, where hard feels too hard.
So again, I can’t give a definite answer to them, but I think that working with their neurologist and just listening to their body. But I will say, running and that type of high-intensity exercise… High intensity, so that means the intensity of the exercise in that moment was not shown to increase seizures. But when we’re talking about marathon running, we’re actually talking about low-intensity exercise over a longer period of time. And that, I don’t think has been looked at in people with epilepsy and probably won’t be. We won’t be making them run long duration to test that, so we don’t have the data there.
Are there any limitations on exercise when you have a VNS?
The reason I say that though is that some of the newer VNSs, they can be set to go off if they detect increased heart rate. The reason for that is that a lot of seizures present with increased heart rate or a fair amount of them do, so the idea is that the device can actually detect that and then go ahead and give a stimulation to help abort that seizure. So of course when you exercise, your heart rate will go up. So, in those cases, again, it still wouldn’t necessarily mean that you couldn’t exercise, but you might want to be aware of that and be prepared for the idea that your device might go off a lot more.
And if you’re somebody who wants to engage in exercise regularly, depending on your seizures and your type of epilepsy, it might be something that your neurologist could adjust. They might be willing to adjust it so that it doesn’t go off every time your heart rate increases a little bit.
So, to some of the data that were presented, on the mood graph, why didn’t exercise or activity decrease fatigue in relationship to non-exercisers? Both groups scored the same regardless of activity.
Good question. And I don’t know the answer to that, but I can offer a few points of speculation. So, it’s possible that the group that was exercising… I believe in that study it was either six weeks or 12 weeks. But when you first start an exercise regimen, you might actually be a little bit more tired because your body is working harder to adapt, which in the end is good, but in the short term could cause a little bit more fatigue. So it could be partly due to that.
Could be, again, like somebody has already mentioned, that sometimes the seizure medications are contributing to some kind of fatigue or sleepiness. And so, it might be that in that study, the exercise group, despite reporting that they had more vigor, we saw that component had gone up, that maybe that wasn’t enough to overcome… That their medications were still making them feel a little bit fatigued. And I don’t know how those two terms are perceived differently, vigor and fatigue.
So again, I’m speculating on that, but I think it could be a lot of different variables. But we do have data from other studies and from that study, showing the vigor, where people have perceived that their energy levels are increasing. And so, I didn’t show those graphs, but when we look at the quality of life scales and epilepsy, they have subdomains. So, a lot of them will look at physical function or energy level as a subdomain of the quality of life scores. And so, with exercise, in a couple of studies, people have reported improvement in the energy or the physical function domain of those subscores. So again, I can’t explain that one study, but I do think in general people have been reporting feeling improvement in their energy with exercise.
Is there a difference between physical activity indoors versus outdoors?
That’s a good question. I guess, it depends on what you’re looking at, a difference in what exactly? But being outdoors has been shown to improve mood, even if you’re not exercising. Being outdoors in the sunshine and the fresh air, that does seem to do a lot of good for a lot of people. So, I would say if the weather’s okay and you’re able to and you have the choice between the two, then going outdoors probably would have more benefits for you health-wise.
However, if we’re talking about a dangerous outdoor situation, maybe it’s not safe to walk in that neighborhood, or the weather’s bad, or being at home and doing a stationary bike means you can have family members nearby who could help you if you were to have a seizure, whereas if going outdoors, your only option is to ride the bicycle, which that was a group two sport because you’re out in traffic and everything, then looking at the difference between those two, it certainly would be safer to do the stationary bike inside. So probably depends on what you’re trying to see a difference in, but there are differences between the two. But then, at the end of the day, physical activity is physical activity. So whichever way you can safely get it would be what I would recommend doing
And just want to be clear that while some of the data focused on mesial temporal lobe epilepsy, this is broad advice for anyone with epilepsy, it’s not just restricted to mesial temporal lobe, correct?
Yes. Thank you for clarifying that. So, most of the studies looked at adults and kids, focal types of epilepsy, general type of epilepsy, some specific syndrome. So, it’s broad advice for all epilepsy.
Are there any mitochondrial effects from exercises that could be a part of the benefits to epileptics from exercise?
Yes is the short answer. They’ve looked at the mitochondrial effects of exercise in humans and a lot of other disease in the general population, in other neurological diseases. Again, as far as I know, we don’t have published data on that in people with epilepsy. But most likely, any of that, that’s affecting brain health is probably going to be beneficial for people with epilepsy.
The reason why we still need to specifically look at it in the epilepsy population, and we can’t just assume, “Oh, it’s good for brain health in Alzheimer’s, it’s probably good for epilepsy,” is that epilepsy is somewhat unique than other neurological diseases, in that it’s increased brain activity, increased signaling. And so, some of these neurotransmitters and things that might be more activating in the brain, which might help dementia or memory loss, we don’t really know necessarily the effect it would have in epilepsy.
So for example with BDNF, that increases synaptic plasticity and neurogenesis, but that’s not always beneficial in people with epilepsy. So, if you have new neuronal connections being made, it’s possible that kind of aberrant sprouting could actually be part of what could be related to the seizures themselves. So, we don’t know any of that, but that’s why we need to look at it in epilepsy, even though we’ve looked at it in other populations. And right now, we don’t have those answers.
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.