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Living With Epilepsy: Your Guide

Posted on May 27, 2022
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Sarah Winfrey

Life with epilepsy can present a variety of challenges, but people diagnosed with epilepsy can experience productive and fulfilling lives by managing their condition in proactive ways. To enjoy your best life with epilepsy, it’s important to take steps to take care of your body, manage stress, make adjustments, and communicate effectively about your condition.

Epilepsy is a spectrum of disorders in which abnormal brain waves disturb the brain’s electrical activity, leading to seizures. Medical treatment options, such as anti-epileptic drugs, can help you manage epilepsy and its symptoms. It is important to maintain your treatment plan as you adjust to life with the condition. That said, you can also consider employing the following strategies to optimize your quality of life while living with epilepsy.

Maintain a Healthy Lifestyle

Lifestyle factors, such as eating a healthy diet, getting enough physical activity, managing stress, and not smoking, can play into how you feel while living with epilepsy.

Diet

In general, eating a healthy diet will make your body strong and help give it the energy it needs to cope with epilepsy on a daily basis. Some types of epilepsy may actually be managed by making certain dietary changes. The ketogenic diet (in which you eat very few carbohydrates and more fats) is one option. Other people find success with a modified Atkins diet, a medium-chain triglyceride diet, or a low-glycemic diet.

Your neurologist may refer you to a specialist, such as a registered dietitian, who can help you devise the right diet plan for your unique needs.

Exercise

Exercise can reduce your risk of developing other health conditions, lower your risk of anxiety or depression, and even help you sleep better. Physical activity may also help keep seizures under control. As long as you avoid any known seizure triggers — for example, exercising after very little sleep or on an empty stomach — physical activity could contribute to your plan for seizure control.

Exercise may be difficult, depending on the severity of your epilepsy or the types of seizures you have. Seek your doctor’s medical advice before you begin any new exercise routine or program.

When you’re cleared for exercise, ensure that your teammates, coaches, or exercise buddies know about your epilepsy in case they need to provide first aid or seek medical assistance. You can also tell these people what they can do to help you if you experience an episode.

Stress Management

Some people who have epilepsy find that stress is a significant trigger for seizures. However, it’s unclear whether stress causes seizure activity or leads to other symptoms (such as lack of sleep or dehydration) that then result in seizures. Either way, controlling your stress will likely make it easier to manage your seizure disorder.

If you need help coping with stress or other mental health symptoms, talk with your doctor about ways to manage stress. The doctor may suggest options such as:

  • Psychotherapy (talk therapy)
  • Online or in-person epilepsy support groups
  • Medication
  • Mindfulness training
  • Exercise

Avoiding Smoking

Smoking may be a trigger for epilepsy. The exact nature of this relationship requires more study, but many neurologists and epilepsy specialists suggest that people diagnosed with epilepsy should stop smoking. If nothing else, quitting smoking may help you avoid other smoking-related health conditions that may complicate your epilepsy diagnosis. Your doctor or health care provider can help you find smoking-cessation resources to help you make this major change in your lifestyle.

How To Talk About Epilepsy With Others

People with epilepsy may struggle with how to discuss their condition with friends, family members, and co-workers. It can help to have some talking points on hand if you are unsure how to approach this conversation.

Talking With Family and Friends

It can be hard to know how to talk about epilepsy with the people you love the most. They may not understand what you’re going through. Here are some tips to help guide this discussion:

  • Provide concise examples of how epilepsy affects you. Try to avoid complicated and lengthy explanations that may be hard for others to comprehend.
  • Describe what seems to trigger your seizures.
  • Be open about what kind of help you might need, even with simple daily tasks.
  • Keep loved ones and friends informed about your treatments. You may want to share a list of medications with those closest to you, in case of an emergency.

Talking With Co-Workers

You have a right to medical privacy at work, and how discreet you are about your epilepsy is your choice. Here are some suggestions for talking about your condition with co-workers:

  • Consider sharing information about your condition with trusted colleagues. They may be able to provide support when needed.
  • Discuss your condition with a human resources (HR) administrator if you need special accommodations or modifications. Businesses with at least 15 employees are required to provide reasonable accommodations for medical conditions as part of the Americans With Disabilities Act.
  • When talking with HR, prepare a list of points and questions so you can be sure to cover all your concerns.
  • Ask your doctor for an explanation of how workplace accommodations might help you, and share that with your HR manager.

Family Life With Epilepsy

Family dynamics can change when someone has epilepsy. Depending on the kind of seizures a person experiences, household tasks can become difficult, and some responsibilities may have to shift. Family members may need to provide medical care and offer more emotional support than they did in the past. Open and clear communication is important so expectations are clear to both the person with epilepsy and family members providing extra support.

Parenting With Epilepsy

Being a parent diagnosed with epilepsy can bring particular difficulties. In general, make sure you do the following:

  • Find ways to accept your condition and the necessity of explaining it to your child in an age-appropriate way.
  • Ask for the help you need to parent well.
  • Answer your children’s questions — or find someone who can give them the information they need — so your children understand your epilepsy and how it affects you.

Working With Epilepsy

If you can work but need accommodations, talk with your human resources department. Most likely, the adjustments required will be based on the severity of your epilepsy. Have your doctor document the way epilepsy affects you, then explain it to HR so you can get any necessary help at work.

Disability Benefits for Epilepsy

If you cannot work and have not been able to work for 12 months because of epilepsy, you may be eligible for disability benefits. You will need to apply and submit documentation of your condition to receive the benefits.

Paying for Medication

The costs of many epilepsy treatments can be high. Your therapy will be much more affordable if you have some form of public or private health insurance, including the following:

If you do not have health insurance, or if you have insurance but need further support, you may find resources within your state to help cover medication costs. Some of the programs available include:

You may want to talk with a Medicare adviser or social worker to find out if you are eligible for programs that can help offset the costs of epilepsy treatment.

Traveling With Epilepsy

Depending on how epilepsy affects you, you may need to modify travel plans or methods so that you can take trips without triggering seizures. Talk to your health care team if you are planning to travel so that your trip won’t interrupt your treatment plan. Carefully assess what seizure medications or supplies you will need for traveling, and organize essentials well before your departure date.

Find Your Epilepsy Team

Living with epilepsy may be made easier if you connect with others who understand what you’re going through. MyEpilepsyTeam is the social network designed for people with epilepsy and their loved ones. More than 106,000 members come together to ask questions, give advice, and share their experiences with others who understand life with epilepsy.

Do you have any strategies for managing life with epilepsy? Do you take certain steps to avoid triggers? Share your thoughts or tips in the comments below or by posting on MyEpilepsyTeam.

All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.

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