Hesperian Health Guides
Chapter 6: Living well with epilepsy
Contents
- 1 Physical activity and exercise help our bodies
- 1.1 Make it about movement
- 1.2 Making physical activity and exercise safer
- 1.3 Supporting physical activity for children with epilepsy
- 1.4 Growing older and physical activity
- 1.5 Contact sports
- 1.6 Climbing with epilepsy
- 1.7 Swimming with epilepsy
- 1.8 Yoga for epilepsy
- 1.9 Social and cultural barriers to staying physically active
- 1.10 Physical activity for women with epilepsy
Physical activity and exercise help our bodies
Our bodies work better when we are physically active. When you exercise, you can feel your heart beat faster, your blood circulate more strongly, your muscles stretch and contract, and your lungs breathe deeply.
Exercising helps oxygen from the air we breathe and nutrients from the food we eat reach our lungs, brain, heart, bones, muscles, and skin. Regular activity reduces the bodyâs risk of infection and illness and helps prevent pain. When you exercise regularly, your body produces chemicals that balance your mood and improve sleep.
Exercise is just as important for people with epilepsy as it is for people without epilepsy. Exercise hardly ever makes seizures worse, and it helps people who take daily antiseizure medicine reduce side effects like tiredness, sleepiness, and increased body weight.
Everyone benefits from having accessible, safe, and attractive places where they can exercise and stay physically active. Encouraging physical activity can also include educating and sharing information about the importance and safety of physical activity.
Regular physical activity makes the body stronger. This strength can decrease seizures triggered by strains on the body. For example, physical activity can strengthen the body of a person with epilepsy to handle tasks like lifting heavy things or keeping up with an active child. When exercise is done safely, it can build self-confidence, and triggers can be avoided and managed.
Make it about movement
Walking around your neighborhood, cycling or walking to work, gardening, and doing household chores are all things we do in our daily lives that keep us physically active. You can build upon daily life activities to get the exercise you need.
Household chores: Cleaning your home, fetching water, firewood, and groceries, washing and hanging clothes to dry, preparing meals, gardeningâŠ
Childcare: Lifting, carrying, bathing, and playing with children, tidying spaces and toys, walking children to and from schoolâŠ
Farming: Clearing fields, digging and planting, weeding, harvesting your produce, cleaning and processing maize (corn), wheat, rice, and other cropsâŠ
Sports and social activities: Football, volleyball, ping pong, cricket, track and field events, jogging, jumping rope, dancingâŠ
Spending less time on screens and moving your body more will help you feel happier and have more energy for your day. Even small amounts of movement can make daily life easier.
Making physical activity and exercise safer
A seizure during or after physical activity might be triggered by different conditions. Tiredness, hot temperatures, dehydration, hunger, low blood sugar, and not taking medicines on time can all cause seizures for some people.
Pay attention to conditions or activities that seem to trigger seizures. Seizures can be prevented or avoided by modifying those activities or conditions.
To prevent seizures during physical activity:
- Take medicines as directed.
- Drink water before, during (every 15 to 20 minutes), and after exercise.
- Eat a light snack about 1 hour before beginning. Nutritious snacks include bananas, apples, oranges and other fruits, and yogurt or milk. Nuts and seeds are also great because they release energy slowly.
If a specific physical activity triggers your seizures:
- Decrease the intensity of the activity and the length of time you do the activity.
- Try a different physical activity that is gentler on your body.
When a seizure happens during or soon after a physical activity you enjoy, it can be disappointing and difficult to resume the activity. Ask for support from a friend or family member to help you try again or choose a different activity.
Get a buddy for safety, support, and encouragement
A buddy can be a friend, family member, or anyone willing to pair up with you for support, assistance, and encouragement during physical activity. A buddy can help provide:
Physical safety: A buddy can make sure you are physically safe and protected from injury, especially if you have a seizure. For information about seizure first aid, see Chapter 2.
More fun: Activity is usually more fun when shared with others.
Encouragement: A buddy can encourage and remind you to stay active. They can help you solve problems that get in the way of your activity.
Skills and learnings: An experienced buddy can help you develop skills and avoid mistakes. If your buddy also has epilepsy, they can share their experience about how best to stay active. If your buddy does not have epilepsy, they can learn about it from you.
A buddy doesnât have to be the same person all the time. Sometimes a friend can join you for a walk, a family member can check in on you, or a neighbor can look out for you. Different people help in different ways. Some give emotional support, some help you feel safe, and others can stand up for you if anyone tries to limit your participation in physical activities.
By letting someone know where youâre going and when youâll be back, a buddy can check on you if needed. A buddy is there for support, however you choose.
Let people know you have epilepsy
Stigma sometimes prevents people from letting others know they have epilepsy and might have a seizure. Especially for times when you are not with a buddy or someone who knows and understands your epilepsy, it is good to wear an identification tag or have information visible on your phone.
Epilepsy ID bracelet, necklace, card, or tag. Make an ID necklace or a bracelet to wear on your wrist or ankle. Or hang a card on your bag or keychain, or keep one in your pocket. Whatever you choose, make sure the ID clearly says Epilepsy, or âI have epilepsy,â and includes the name of an emergency contact and, if you use one, an emergency medicine. This will help others help you.
Epilepsy information on your phone. If your phone has a GPS locator, keep it turned on so people can find you in case you lose consciousness or do not return home when expected. Put a message like âI have epilepsyâ on your phone screen. Keep your phone unlocked during physical activity. Save emergency information of people to contact and identify them as sister, partner, father, etc. so they are easy for someone else to find.
How to make it easy and fun to stay active
- Keep it simple. Find activities with low or no requirements for special equipment that can be done easily wherever you are, like walking or propelling yourself in your wheelchair. Stretching can be done almost anywhere while standing, sitting, or lying down. See examples of basic yoga poses.
- Set goals and commit to meeting them. Think about the kinds of physical activity you want to do and can do. Make a plan for when, where, and how long. Commit to start slowly and work towards your goals, despite difficulties that may arise.
- Track your progress. Honest tracking of activity helps you stay motivated.
- Do not get discouraged. Even if all your goals are not met, the important thing is to be active in some way, every day. It is OK to miss a day. Just keep moving forward.
- Pay attention to your body. Pause and rest when you are hot, thirsty, or tired. You may need a break or to eat or drink before you start again.
- Get help to remove barriers. Talk to someone you trust or get a buddy for support, safety, and encouragement.
For health workers
Daily physical activity is something most people with epilepsy can do safely without medical support.
Worry and safety concerns about a person with epilepsy are understandable. Family members and friends often find themselves balancing the desire to encourage physical activity with feelings of protectiveness. But overprotection can limit a personâs independence and lower their self-confidence. Health workers can help familly members find the right balance between protection and encouragement.
Supporting physical activity for children with epilepsy
Physical activity and playing with other children are important for growth. Playing with others helps children learn, develop, and make friends. Movement and play give pleasure and confidence, let children support each other, and offer a break from difficulties.
Children with epilepsy need the same opportunities to move their bodies and play as other children and should not be excluded or treated differently during physical activities. Encourage exercise in ways that match each childâs abilities. Parents, teachers, and other children and adults can teach and learn about epilepsy and seizures at schools, playgrounds, churches, child care centers, and other places where children spend time and play.
Growing older and physical activity
Seizures and epilepsy can begin at any age, including later in life. No matter when they start, staying active is key to good health. As we grow older, we might need to adjust how we move, but regular physical activity still brings big benefits. Older adults can:
- walk 15 to 20 minutes a day to keep up stamina.
- do arm exercises to build upper body strength.
- stretch or do yoga to stay flexible and improve balance.
If an older adult with epilepsy joins an exercise group, others can learn seizure first aid to help keep everyone safe. It is important to adapt activities as the body and its needs change. You can move your wheelchair with your arms if you cannot walk, and do chair yoga rather than floor yoga. Make adjustments so you can stay active.
Contact sports
Hitting, tackling, or pushing are all features of contact sports like football, basketball, rugby, hockey, and wrestling, among others. Many people, including those with epilepsy, think the enjoyment from playing contact sports outweighs the chances of getting hurt.
Having epilepsy does not make you more likely to get hurt in these sports. But if you are hit on the head, it could trigger a seizure. You might want to limit or adapt your participation in contact sports if your seizures are not controlled by medicine.
To prevent head injury during contact sports and support participation from people with epilepsy:
Let people know you have seizures so those who you play with are aware and can offer seizure first aid if a seizure happens. Everyoneâplayers, coaches, and othersâ can learn simple steps to prevent injury during a seizure (see Chapter 2).
Wear a safety helmet during games and practice.
Climbing with epilepsy
Climbing happens in various settingsâon stairs or ladders, during sports, while picking fruit or trimming trees, and during play, especially among children.
Safety tips for climbing with epilepsy
If seizures are not controlled with medicine: Avoid climbing ladders or stairs, or being on ledges or balconies with no railings, especially when alone.
If you take medicine for epilepsy: Avoid climbing until you are aware and confident of your seizure patterns.
Prevent injuries from falls: Use handrails on stairs. Limit the need to climb stairs by making often-used things available on every floor of a home, school, or public building.
Use safety equipment for climbing: Wear a helmet, harness, etc.
For parents. When a child with epilepsy is climbing and falls because of a seizure, it is not due to carelessness or clumsiness. Childhood seizures can be difficult to identify, so talk to a health worker about what medicines might prevent a seizure from happening again and finding a support group for parents of children with epilepsy.
Swimming with epilepsy
A buddy can make swimming safe for someone with epilepsy. In fact, it is a good idea for anyone swimming to have another person nearby. People with epilepsy are often told they must not swim because of fear of drowning during a seizure. This is not true.
Safety tips for swimming with epilepsy
Swim with a buddy who knows seizure first aid and can help if a seizure happens.
Choose safe swimming locations, like a public pool, or a lake, river, or ocean with a designated swim area. Stay in shallow water to make swimming safer.
Inform others about your epilepsy. If you swim someplace regularly, teach people who work there or visit often what to do if you have a seizure.
For information about what to do when a person has a seizure in water, see Chapter 2.
For parents Children who have seizures need constant supervision while swimming. A person watching them nearby can help prevent serious injury or drowning if a child has a seizure in water.
Kwame fights his fear of swimmingâby swimming!
Last year, I had a seizure in the changing room at the swimming pool. Thankfully, it was after my swim and I was out of the water. But it made me nervous. What if my next seizure happened in the water?
Iâm not sure if this fear will ever go away completely, but each time I swim, I work to conquer it. Iâve tried other sports, but I enjoy swimming so much that I do it every day.
I told the people managing the pool that I have epilepsy and they could help me when needed by learning simple seizure first aid. They agreed.
At some other pools, the managers refuse to let me swim because they think I am dangerous. The truth is, I have a disability, and it is simple to learn what to do if I ever need help. What is dangerous is not knowing what to do when someone needs help!
When more people are open to learning how to help people having seizures, more people with epilepsy will feel safe and confident to swim. When more people understand what epilepsy is, people who have it will face fewer restrictions and will live happier, freer lives!
Yoga for epilepsy
Yoga benefits our bodies and our minds. It is one of the pillars of traditional Indian medicine. It has been around for thousands of years, long before antiseizure medicines were invented.
Yoga views the body, breath, and mind as connected. Practicing yoga and this feeling of connectedness every day helps keep stress levels low, making it easier to manage daily life and reduce stress-triggered seizures. A regular yoga practice can build self-reliance and strength.
A person doing yoga is working on several things at once. Yoga involves:
- movement and poses that stretch the body, build strength, and improve balance. Yoga is a great addition to activities like walking, swimming, or cycling.
- breathing with a specific purpose or objective in mind.
- noticing all the thoughts that come up during movement.
- learning to feel joy, confidence, and energy despite challenges in the body and mind.
Yoga will not make seizures go away, but it can reduce stress, panic, sadness, anger, and feelings of âwhy me?â
Here are some basic and gentle yoga postures and breathing techniques that relax and calm the mind, and improve oxygen flow to the brain, where seizures start. Follow the step-by-step instructions at home every day or as often as you can.
Getting started with yoga
To do yoga, you donât have to go anywhere or do anything special. Just decide you want to do it and do it every day or a few days each week. Soon you will feel a shift in your body, mind, and spirit.
If it makes you feel more secure, ask someone who knows seizure first aid to be near you when you are doing yoga. Invite them to join you in the movements and breathing. If there is someone in your community who does yoga, ask for their support. Let them know you have epilepsy.
If you experience an aura or a feeling that a seizure is about to happen while you are practicing yoga, sit down and stop moving. Connect with your breath.
Make sure the space where you are doing yoga is clear of sharp or dangerous objects that might hurt you or cause injury if you have a seizure. Yoga poses involve standing, sitting, and lying down. Cushion hard surfaces with a mat or blanket to make yourself comfortable. Practice breathing and moving in and out of poses slowly.
Alternate nostril breathing (Anulom Viloma Pranayama)
- Find a quiet place and sit with your shoulders relaxed and back straight, either cross-legged on the floor or on a chair with your feet flat on the ground. Rest your hand on your knees and close your eyes and relax.
- Use your right thumb to gently close your right nostril. Hold your ring finger near your left nostril. Do not block the left nostril.
- Breathe in slowly and deeply through your left nostril. Hold your breath.
- Now close your left nostril with your ring finger, release your right nostril, and breathe out slowly through your right nostril.
- Breathe in through your right nostril.
- Switch and exhale left.
This completes one round. Repeat for 5 to 10 rounds, breathing slowly and gently to relax. If you feel uncomfortable, stop and breathe normally.
Benefits of alternate nostril breathing
- Helps calm mind and relax body
- Releases stress
Hissing breath (Sheetkari Pranayama)
- Sit with relaxed shoulders and straight back, as described for alternate nostril breathing.
- Gently bring your upper and lower teeth together. Part your lips slightly and gently so your teeth can be seen.
- Roll your tongue up to touch the roof of your mouth, if comfortable. Breathe in slowly through the gaps between your teeth, making a soft sound. Focus on the cool sensation of the air.
- If comfortable, close your mouth and hold your breath for a few seconds, letting the coolness spread.
- Close your mouth and breathe out slowly and completely through your nose.
Try this for 5 to 10 rounds, staying relaxed and focused on your cooling, calming feeling.
Benefits of hissing breath
- Cools body and lowers body temperature (great during hot weather after exercise)
- Releases stress and tension
- Relaxing can help lower heart rate
Childâs pose (Balasana)
- Sit with buttocks resting on or slightly above heels, knees apart.
- Lean forward keeping buttocks in place. Let your belly drop between knees.
- Rest forehead on the floor as best as you can. Stretch arms forward, palms down. Relax shoulders.
- Stay in this pose and breathe in and out for 7 to 8 breaths.
Benefits of childâs pose
- Releases stress
- Improves blood and oxygen flow to the brain
- Stretches back, thighs, hips, arms, and shoulders
- For a person recovering from a seizure, this pose relaxes aching muscles and bones
Tree pose (Vrikshasana)
- Stand up straight with feet shoulder distance apart, arms at your sides.
- Shift body weight onto one foot.
- Slowly lift other foot off the ground. Focus on balance and stabilityâuse wall or a chairback for balance, if necessary. Bend raised knee and bring bottom of raised foot to rest against inner thigh. If this is challenging, bring foot to lower part of leg, but avoid the knee. If you lose balance or are shaky, do not be disappointedâjust try again.
- Bring hands together in front of chest, folded as in prayer. Or raise arms overhead, palms facing each other.
- Keep your gaze fixed on a point on the floor or wall to help keep your balance.
- Stay in this pose and breathe in and out for 7 or 8 breaths.
- Slowly lower arms and the raised foot to return to a standing position.
- Repeat the same steps on the other side.
Benefits of tree pose
- Improves balance and stability, which can reduce risk of falls or injuries during seizures
- Releases stress
- Over time, as balance improves, builds sense of achievement, self-esteem, and increases self-confidence
Forward fold (Uttanasana)
- Stand up straight with your feet shoulder distance apart.
- Breathe in. Release breath and bend forward from hips so belly and chest move closer to thighs.
- Feel free to slightly bend knees as torso moves downward. Touch your toes, hold your ankles, or place your hands on the ground.
- Stay in this pose and breathe in and out for 7 or 8 breaths.
- Breathe in as you roll up slowly. Feel the stretch in your back, hips, and legs.
Benefits of forward fold pose
- Stretches and lengthens the spinal column
- Releases stress, feelings of panic, and tiredness
- Helps clear mind
Biban says yoga helps her epilepsy
My seizures started when I was 5 years old. When I was 10, I had a generalized tonic-clonic seizure at school. I fainted. When I woke up, I had passed urine in my skirt.
My aunt, who is a nurse, took me to a hospital where they told me that I have epilepsy and must take medicine every day. But even with the medicines, I sometimes still have seizures.
I love to run, dance, and go for long walks and didnât want to stop any of that. When I was 15, my aunt suggested I try yoga.
Yoga helps me deal with my epilepsy in a positive way. Before a seizure, I can feel my brain getting excited, but doing yoga helps me stay calm and relaxed.
Sometimes having epilepsy makes me feel sad and tired, but when I do yoga, I feel proud of myself. It is like charging my bodyâs battery. It always makes me feel better
Social and cultural barriers to staying physically active
Stigma and lack of information about epilepsy can make people believe too much physical activity causes seizures or makes epilepsy worse, or that people with epilepsy are dangerous to be around.
This can make people with epilepsy feel bad about their bodies and believe something is wrong with them. They may withdraw from group activities, exercise, games, and sports. See Chapter 5: Acting against epilepsy stigma, for ideas about how to challenge these beliefs and reactions.
The barriers that prevent people without epilepsy from being active in their daily life, such as time, cost, and access, also harm people with epilepsy. Added to these challenges are stigma and safety concerns. But people can work together to remove these barriers for everyone.
Team sports
People are often fearful of what they do not understand. Talking openly about epilepsy and seizures can help change wrong ideas and beliefs. It also allows people who might be great players onto your team so you can win together! Accepting each other, with all our strengths and weaknesses, helps everyone improve and appreciate life in all its richness.
Bicycling to beat stigma, fear, and sadness
I am Vinay Jani. At 21, I started having focal seizures. No one in my family knew about seizures or epilepsy. So, for 3 years, I did not use medicines. I tried doing things suggested by traditional healers, homeopathy, and ayurveda (Indian medicine). Nothing worked.
I felt extremely sad and lost the will to do anything. One day, I had an intense seizure and lost consciousness. After that, I was diagnosed with epilepsy. My seizures could be controlled with medicine, but the doctor said I had to take a very high dose because I weighed close to 135 kilos, and high doses can be dangerous. All this caused me more sadness and worry.
I decided to break through my sadness and worry with physical activity. I started taking the medicine and exercising at the same time. With medicine, I felt confident I would not have seizures.
I signed up for an indoor cycling class at the gym. I suggested that a friend go with me to the gym, and I told the staff about my epilepsy and my physical activity goals. They asked me how they could offer support. The more I opened up about my epilepsy, the better I felt.
One day, the trainer asked me, âWhy donât you join an outdoor cycling ride?â
I was hesitant, afraid of having a seizure outdoors where people could see. I was honest about my fears with the trainer. To my surprise, she said, âDonât worry, I will learn seizure first aid and train some others in our group too.â So I got a new bicycle and opened a new chapter in my life!
Physical activity for women with epilepsy
Many cultures still consider physical activity a taboo for women. Traditional gender roles assign women to care for the household and family, not for themselves or their bodies. Some cultural and religious traditions claim to preserve a womanâs honor and reputation by not allowing her to do physical activities considered revealing or improper for women. When women engage in physical activity outside the home, they challenge these beliefs.
Even in so-called âmodernâ societies, body image and beauty standards influence ideas about what women are supposed to look like and often link physical weakness to being beautiful.
Women with epilepsy face even more challenges in meeting their bodyâs need to move and stay physically active. Their epilepsy makes them more likely to be told they should not exercise and do not belong in gyms or on playing fields.
Everyone can challenge gender roles, outdated traditions, and mistaken ideas about health conditions by talking with their partners and families, raising children for an equal world, and working to change how schools, religious institutions, and governments place harmful limits on the freedom of women with epilepsy.
Talking about this may bring up shame or fears about what others think, but it is necessary to bring about change. A person who stands up and speaks out encourages others to strive for more fairness and equality.
I will travel everywhere with my epilepsy
Namaste. I am Priti. I was diagnosed with epilepsy at a very young age. My parents faced ridicule in our small Indian community, where sons are considered blessings but daughters bring shame. My parents protected my sister and me from those harmful opinions and encouraged us to dream big.
My dream was to travel the world. I did not know of any women with epilepsy who did that. Even my close friends refused to travel with me. I could tell they were afraid I would have a seizure and they would not be able to help me. But their fear did not make me give up my dream.
At 23, I took my first trek up a mountain to a hill town. That gave me confidence that I could do more. Along the way, I met other women who told me how they often do not feel safe while traveling and trekking alone, because of crime and violence against women.
This experience made me realize: A woman does not have to have epilepsy to feel unsafe while traveling! I felt a need to challenge these barriers so women, especially women with epilepsy, can travel independently in groups with other women, without partners or parents. So I started an all-women travel program. It was tough to convince parents to send their daughters on trips. When I told them, âWe will not be in danger because we will travel as a group,â they had other concerns: A female tour guide with epilepsy? How can she be a leader?
When I hear that, I say, âThe more women travel together, on their own and with friends, the more they develop life skills and grow confidence, and the more they show the world what is possible.â
When people have doubts about me because of my epilepsy, I also share that thousands of people across the world, including myself, manage their epilepsy with medicine. People who have seizures and epilepsy are encouraged to carry emergency medicine, in addition to their daily medicine, on trips. Many people have been very curious and also very accepting.
Fear usually forces women with epilepsy to sit at home and wait for their next seizure. But like everyone else, we have the right to live our lives as we want, on our terms. Today, I can proudly say my epilepsy has led me to strengthen my community and society by encouraging people to break barriers together!
Physical activity during pregnancy
Many traditional beliefs try to limit a person's activities during pregnancy. Continue physical activity during pregnancy, though you may need to adjust what you do as your balance changes and to avoid injury. Being active during pregnancy supports better energy, mood, and health for both you and your growing baby.
It can be hard to stay physically active during pregnancy, especially if you are feeling tired or worried about having a seizure. But safety concerns and challenges like changes in medication or sleep are not reasons to stop exercising. Making group and outdoor spaces welcoming and safe for pregnant people, both with or without epilepsy, will help make pregnancy healthier for everyone.