Practical Tips and Life Hacks for Living With Epilepsy
Medically reviewed by Forest Miller, MSOT, OTR/L
If you're living with epilepsy, you already know that it takes more than medication to manage the condition. It takes a partnership between you and your healthcare provider. Your preferences and goals should be incorporated into the treatment plan.
Epilepsy can present challenges in virtually every aspect of your life. It affects you at home, at work or school, and in your social life. That's a lot to consider. And it takes a lot of self-management.
This article provides tips that may make managing and living with epilepsy a little easier.
Treatment and Medication Management
About 70% of people with epilepsy can manage seizures with medication and surgery. That's why treatment and medication management should be a top priority. Here are a few tips toward that goal:
See your healthcare providers regularly.
Take medications as prescribed. Check with your healthcare provider before making changes or adding new medicines or supplements.
Keep a written record of seizures so you can try to identify and avoid triggers.
If your healthcare provider participates in an online health portal, use it to track medicines and manage appointments. Some portals allow you to send brief messages to healthcare providers.
Check with your health insurer to see if you can use a mail-order pharmacy for automatic refills and home delivery.
Look into telehealth options, which can help when transportation is a problem and are as safe and effective as most in-person visits.
Get a medical alert bracelet.
Most people with epilepsy lead full, active lives. However, having epilepsy raises the risk of serious complications, disability, and death.
Factors that increase the risk of early death include:
Having additional serious health problems that can cause seizures
Injuries during seizures
Seizures that last more than five minutes (status epilepticus)
Sudden unexpected death in epilepsy (SUDEP) is rare. It's unclear what causes it, but this risk may be higher in people with major uncontrolled seizures.
You can lower your risk of injury due to seizures with precautions such as:
Choose carpeting with extra-thick padding instead of hard floors.
Add padding to sharp corners and avoid glass tables.
Use the protective screen on your fireplace.
Avoid space heaters that can easily tip over.
Ensure small appliances such as irons and blow dryers have an automatic shut-off.
Research medical alert systems for your home.
Tips for the Kitchen
In the kitchen:
When possible, use the microwave instead of the stove. When using the stove, choose the back burners.
Use rubber gloves to handle sharp items or glassware.
Use cups with lids for hot beverages.
Tips for the Bathroom
In the bathroom:
Never use electrical appliances near water.
Keep the bathroom door unlocked so someone can get in during an emergency. An "occupied" sign on the door handle should help with privacy.
Install grab bars.
Managing Epilepsy at School With a Seizure Action Plan
Create a "seizure action plan" to share with the school nurse, teachers, or anyone else who can help during a seizure. Include such items as:
Contact information of caregivers and providers
Medications, as well as how and when to use them
Potential seizure triggers
Proper first-aid procedures
Information for when to call a healthcare provider and when to call 911
Managing Epilepsy at Work
Some things to consider in the workplace are:
Whether the job involves driving or working around dangerous machinery
Potential hazards, such as climbing ladders or a lot of stairs
Long or erratic work hours that could make seizures more likely
You might want someone at work to know what to do if you have a seizure, such as by sharing your seizure response plan. But under the Americans with Disabilities Act (ADA), you have no obligation to disclose that you have epilepsy unless you plan to ask for reasonable accommodations. Examples of accommodations include:
Carpeting or rubber mat to cushion falls
Work schedule adjustments or working away from potential triggers
Permission to work at home
Transfer to another available position
Diet and Exercise
Some healthcare providers may recommend a ketogenic diet to people with epilepsy. This diet is high in fat and low in carbohydrates. People with symptomatic generalized epilepsy may be good candidates for this diet. Be sure to let your healthcare provider know if you want to try it.
If your healthcare provider hasn't recommended a particular diet, concentrate on a balanced diet. Make your food at home rather than eat out whenever possible. Avoid tobacco, and drink alcohol in moderation or not at all.
Physical activity can improve quality of life, reduce the risk of developing other health conditions, and may help reduce seizures. Here are a few ways to make exercise safer:
Carry your medic alert bracelet or card.
Exercise with a friend who is aware of your epilepsy and knows what to do should you have a seizure.
Wear protective gear appropriate for the activity.
Consult with your neurologist before starting potentially risky sports.
Sleep and Mental Health
Sleep disorders are twice as common in people with epilepsy than those without epilepsy. Sleep problems disrupt seizure control, and seizure control affects sleep. If you have major sleep problems, it's worth seeing your healthcare provider. In the meantime, try these basic sleep hygiene tips:
Try to go to bed and get up on the same schedule daily.
Avoid caffeine, nicotine, and alcohol close to bedtime.
Avoid big meals before bedtime.
Don't exercise close to bedtime.
Keep the bedroom quiet, dark, and cool.
Do something relaxing before getting into bed.
Mental health problems can exacerbate epilepsy, and vice versa. Here are some steps you can take to relieve stress and manage mental health:
Speak with your healthcare provider about mental health concerns.
Maintain social connections.
Get outside. As little as 10 to 20 minutes in a green space can help reduce stress and anxiety and help you feel refreshed.
Take "me time" when you need it.
Add fun outings to your schedule.
Take some of the stress out of travel with preparation. If you have frequent seizures, it's best to travel with someone. If you can't, share your schedule with someone. Here are some other key items for your to-do list:
Be sure you have all your medications and that they're easily accessible.
Keep taking your medications on time.
Wear a medical alert bracelet.
Keep your prescriptions handy in case you run out of medicine.
Related:Tips for Traveling Safely With Epilepsy
Driving and Traveling Locally
Most states won't issue a driver's license to someone with epilepsy unless they can document that they haven't had a seizure for a certain length of time. Rules vary from state to state. You can learn more about state regulations through the Epilepsy Foundation.
If you have a license, take frequent driving breaks and stop when tired. If flashing lights are a trigger, don't drive after dark. If you don't have a license:
See if someone wants to ride-share.
Use public transportation such as taxis, buses, or subways.
Use car service apps such as Uber and Lyft.
Vacations and Longer Trips
Traveling by bus or train are good options. If your epilepsy is well controlled, it may be safe to travel by plane. You may want to discuss major travel plans with your healthcare provider first.
Be mindful of things that could impact your health, such as changing time zones and different sleep patterns. Keep medicines or other essentials in your carry-on luggage so you have access to them.
Living with epilepsy is challenging. Effective treatments help many people manage epilepsy and live full lives. But managing epilepsy can take more than medicine. Because epilepsy can touch virtually every area of life, living with it can take a lot of self-management.
That's why it's important to work with your healthcare providers on a total treatment plan. By incorporating practical steps that fit your lifestyle, you can help improve your overall quality of life.
If you are having trouble coping, reach out to a mental health professional. It might also be helpful to connect with others who have epilepsy and understand what it's like. The Epilepsy Foundation can point you toward local support groups.
Frequently Asked Questions
Can a person live a normal life with epilepsy?
You can live a full life with epilepsy. The World Health Organization (WHO) estimates that up to 70% of people with epilepsy could live seizure-free with proper diagnosis and treatment. But everyone's challenges are different, and it takes time to learn how to manage epilepsy.
Is it safe for someone with epilepsy to live alone?
Some people with epilepsy can live alone, but it's not safe for everyone. Much depends on the severity and frequency of seizures. Other considerations are medication side effects, availability of services and support, and financial stability.
Does epilepsy qualify as a disability?
Yes, but it depends on the circumstances. The Social Security Administration lists epilepsy as a condition that may qualify you for disability benefits. However, there are strict requirements regarding types of seizures and how epilepsy impacts your ability to function. You also must have worked long enough and recently enough in jobs contributing to Social Security.