Newswise – Exercising has helped Delhi college student Vinay Jani gain strength and lose weight. But in 2005, he started having seizures. Seizure control was elusive, and Jani went into a depressed state. He stopped exercising and regained more than half of the weight he lost.
After a stay in the hospital for an epileptic seizure, Janie returns to the gym. Because he was still suffering from seizures, he asked his friends to pay attention to him during rehearsals.
His seizures were controlled for a while, but then returned. He changed neurologists, tried new medications, and eventually had surgery. Through it all, March. His gym visits led to indoor cycling, which led to outdoor cycling. A few years ago, he added running to the mix.
Today, Janie is an endurance runner, marathoner, and epilepsy advocate who encourages everyone with epilepsy to be physically active—for fitness reasons, but also for social and emotional reasons.
“Often, people isolate themselves when they are diagnosed with epilepsy,” Jani said. “They don’t share their hearts. They start living on their own. If they go out for exercise, any kind of exercise, they’ll meet people and they can de-stress.”
ILAE recommendations on exercise
Studies show that exercise improves physical fitness, mood, thinking and memory, and overall quality of life in people with epilepsy — all benefits that apply to people without epilepsy, too. Other than in rare cases (exercise-induced reflex epilepsy), physical activity does not increase the risk of seizures. But surveys have shown that people with epilepsy are less active than the general population, tend to perceive their health as poor, and have lower objective physical fitness on muscle tests, compared to people without epilepsy.
People with epilepsy are often excluded from sports and exercise, usually because of fear, overprotection, and ignorance of the specific benefits and risks associated with these activities. Many may also avoid physical activity due to the same fears and misconceptions.
In 2015, the ILAE Task Force on Sport and Epilepsy published a report that provided guidance on which sports and types of exercise are considered safe, depending on the frequency and type of seizure.
Jaime Carrizosa and Ricardo Arida led a recent survey of neurologists in Latin America to assess their knowledge of the importance of physical activity in people with epilepsy, as well as their awareness of the ILAE report.
“What surprised us, in a positive way, is that most neurologists know about the benefits of exercise in epilepsy,” said Arida of the Federal University of São Paulo, Brazil.
Over 90% of neurologists surveyed supported physical activity for people with epilepsy and agreed that exercise can reduce comorbidities. But only 40% were aware of the ILAE’s recommendations, and 35% said they had no information about the physical activities of people with epilepsy.
“Recognizing the benefits of exercise is one thing, discussing exercise with the patient and prescribing or recommending it,” said Carrizoza, MD, professor of pediatric neurology at the University of Antioquia, Medellín, Colombia. “How many of them tell patients how important it is to do some physical activity 3 to 5 times a week for a certain amount of time? Or do they only talk about it if the patient asks about it?”
Carrizosa said researchers completed a literature review on physical activity and epilepsy. “We found fewer than 42 people who experienced an association between exercise and seizures, over the course of more than 30 years of research literature,” he said. “I would say in over 99.5% of people, there is no correlation.”
Spreading misconceptions about exercise
“I think there are a lot of misconceptions circulating around exercise in people with epilepsy, and it’s a problem,” said Helle Briglia Alexander, MD, a neurologist at Wake Forest Baptist Health in Winston-Salem, North Carolina, US. “I think there is a specific gap that people who care for patients with epilepsy are not aware of current knowledge.”
People with epilepsy may remain afraid to exercise, or their family members may be afraid to let them do so. Alexander said more information and better communication between doctor and patient is needed.
“We don’t really know what kind of fear it is,” she said. “Fear of having a seizure? Fear of embarrassment? Worried that other people won’t know what to do if they have a seizure? Medical providers can help dispel all of these fears, but we need to talk about it.”
For clinicians strapped for time, Alexander suggests offering a leaflet on exercise and epilepsy, or referring patients to the Epilepsy Foundation website, which has a section on exercise.
Alexander noted that some people with epilepsy have risk factors for cardiovascular disease that may put them at greater risk than the general population. And while some of these risk factors cannot be controlled, physical activity can improve cardiovascular health in people with epilepsy, just as it does in others.
If providers waited for patients to ask about the exercise, she said, it might never happen. “At least in my experience, patients never mention the topic. It might be different in pediatrics where parents might ask about it, but in the adult world I don’t get the question as often.”
“Exercise may be something we have to push for,” she said. “Not only answering questions about it if they show up in the clinic but starting conversation and encouraging exercise, just as we advise people on the importance of getting enough sleep and not missing doses of medication.”
ILAE Task Force Recommendations on Exercise: Summary
*Resolved epilepsy is defined as no seizures for at least 10 years and no use of anti-seizure medications for at least 5 years.
**See tables for lists of activities by group, and for specific recommendations.
A clinician can make a difference by addressing people’s concerns through conversations.
Sports and exercises categorized by group – click to expand
“Doctors can influence a patient’s decision to be more physically active or to start an exercise programme,” Arida said. “They can help patients be more confident about exercising and talking about activities they might be more comfortable doing.”
It is also important to address the fear of having a seizure during exercise.
“For well-controlled people, this is not a realistic fear,” said Jane Allendorfer, assistant professor of neurology at the Hersink College of Medicine at the University of Alabama, Birmingham. United States of America. “Hearing that from a doctor, someone they look to for medical advice, would be really helpful. To be said, ‘You’re seizure-free; there’s nothing to stop you from doing physical activity.’”
There are other barriers to physical activity in people with epilepsy:
- Access to a safe and appropriate place to exercise, such as a gym or walking path
- Access and availability of group activities
- Costs, for membership, lessons, transportation, or equipment
- Depression and anxiety, which can make it difficult to start and continue exercising
- Fear of stigma by having a seizure in public
Recommendations for exercise in persons with epilepsy – click to expand
“Some people may want to exercise with others, but they can’t find a way to do it,” Carrizosa said. “Or they may have an opportunity to do so but feel afraid or ashamed because of their epilepsy. They don’t want to reveal that they have epilepsy, and that prevents them from participating.”
While stigma can stop people from exercising, exercise can help reduce stigma and promote self-advocacy. Jani said he’s been open with his gym-going friends about his condition so they can help him be safe while working out. When he started cycling outdoors, his coach and teammates were aware of his condition and learned what to do if he had a seizure. When he joined a running club in Delhi, he told the group that he was an epileptic and would need someone to accompany him.
Before the surgery, Janie had auras, so he could stop his activity and alert someone. He recalls only one seizure during physical activity in 15 years; It happened while cycling outdoors. “When I felt the halo, I stopped my bike and told my riding partner,” he said. “My fellow cyclists keep my medication with them.”
What types of activities are safe?
“If you’re seizure-free, there shouldn’t be anything stopping you,” Allendorfer said. “Your risk is the same as anyone else’s. If you do have seizures, there is some caution depending on the type of sport or exercise you do.”
The tables in this article have been reproduced with minor modifications from the ILAE Consensus Report.
What the research shows
Recent research on physical activity in people with epilepsy has found improvements in quality of life and cardiovascular health. Some studies using EEG monitoring found that interictal epileptiform discharges decreased during the post-exercise period.
Experiences of controlled physical activity in people with epilepsy are complex. Allendorfer conducted a recent experimental study on the effects of exercise on cognition. Study participants completed weight training sessions, as well as an exercise on an indoor recumbent bike. During the six-week program, participants visited the study site three times a week for supervised training.
“Memory is the number one cognitive complaint in people with epilepsy, and there are no pills you can take to improve memory function,” she said. “In our study, there were improvements in verbal learning and verbal recognition memory in the group that exercised, and a slight decrease in the group that didn’t.”
Allendorfer saw changes in the functional connectivity of the hippocampus on MRI scans that correlated with changes in verbal learning and memory. She is now conducting a randomized controlled trial to further explore the effects of exercise on cognition.
“The people who did the pilot study were really grateful and encouraged that they could exercise to the level that they did,” she said. “They worked so hard! And then, we were able to give them their workout specs: what they did while they were studying, settings for all the gym equipment and intervals, so now they can walk into any gym and see what they’re doing.”
Gym training isn’t for everyone, Janie said, but everyone can start somewhere. “People can engage in any type of physical activity that works for them. They can go for a walk or run, they can do yoga. And exercise gives you options to socialize, go out, and meet people to work out together.”
Carrizosa said the impact of a healthy lifestyle is important to remember. “There’s a lot of talk about new technology, new medicines, surgeries, etc., but not enough about what people can do in everyday life – like exercise,” he said. “It’s something you can do all over the world, wherever you are, and it has a huge impact. So I think it’s important to raise awareness.”
Capovila C et al. (2016). Epilepsy, seizures, physical exercise and sport: a report from the ILAE Task Force on Sport and Epilepsy. Epilepsy 2016; 57: 6-12.
Arida RM, et al. (2022). Neurologists’ knowledge and attitudes toward physical exercise for people with epilepsy in Latin America. epileptic behaviour 2022 Jun; 131 (point A): 108,705.
Staying Safe with Exercise and Sports (Patient Information): Epilepsy Foundation of America
Fitness and Exercise with Epilepsy: Epilepsy Foundation of America
UAB to study whether exercise can enhance memory in people with epilepsy (Press release, Allendorfer Research) December 2021