Living With Epilepsy

The challenges of living with epilepsy can vary widely from person to person. Some people with good seizure control only need to take their medicine daily or no longer need drugs and generally lead a healthy life.

Those who still have seizures face more difficulties. Recurring seizures may mean no driving, challenges with school or work, and more frequent hospital stays. Some people are no longer able to live alone.

It may take time to find the right combination of treatment and lifestyle changes that make a difference in your life. Here are a few suggestions of ways people with epilepsy manage their life and their conditions.

Coping with an unpredictable disease

If you have seizures, it is important to talk with friends and family about your epilepsy so they can help you. They will need to learn seizure first aid and have a copy of your seizure action plan.

You may need help with household chores that involve being on a ladder. Sometimes, daily activities like cooking or exercising are a challenge. And you may need people to drive you to doctor’s visits and errands. Your loved ones can also support any special diet needs, help you socialize, and remember to take your medicine.

Identifying and managing seizure triggers

Some people with epilepsy are more likely to have seizures when exposed to certain conditions. Identifying triggers and then avoiding them can help these people stay healthier. Common triggers include:1

  • Missed doses of anti-seizure drugs
  • Lack of sleep
  • Stress
  • Illegal drugs and alcohol
  • Flashing lights and patterns
  • Over-the-counter drugs and supplements

Managing treatment side effects

Brain fog and memory issues are frustrating side effects of seizures and anti-seizure drugs that can complicate your treatment. Memory problems may make it hard to remember to take your medicine correctly and on time, or even take it at all.

To make matters worse, instructions on some pill bottles can be confusing. It is important these issues are worked out so you find a way to stay healthy. If you are unsure about how to take your drugs or are having side effects, it is important to discuss this with your doctor. They can make adjustments to your treatment plan.2

Coping with finances

Epilepsy can be especially damaging to a person’s finances. If seizures are not controlled, it may be impossible to work. Even if seizures are controlled, drugs and surgery can be expensive. Insurance often only pays part of your expenses. Finding financial support can help relieve the anxiety of how to find money to pay for your epilepsy care.3,4

Working with epilepsy

One of the challenges of living with epilepsy is finding and keeping a job. People with epilepsy may miss work because of doctor’s appointments, hospital visits, or the need for time to recover from a seizure. Seizures may interrupt work or limit the jobs you can hold. People with seizures that include loss of consciousness may have driving restrictions, so it can also be hard to commute to work.5

When employers do not understand how epilepsy impacts daily life, they may make unfair assumptions. However, laws protect job applicants and employees with epilepsy.

Driving and traveling with epilepsy

Nearly all adults in the general U.S. population have a driver’s license. But only 7 out of 10 adults with epilepsy do. This means seizures that limit driving may greatly impact a person’s ability to hold a job and socialize.6

Every U.S. state has different laws about driving and epilepsy. Most states require a person to be seizure-free for a certain amount of time. This time can vary widely – from 0 months to 2 years. The laws do not distinguish between repeated seizures and single seizures.7

Traveling may also be challenging if you or a family member have epilepsy. It depends on the type and frequency of seizures. It also depends on each person’s comfort with managing safety issues.

Improving mental health

Depression, anxiety, and memory problems are common in people with epilepsy. This is especially true if someone’s seizures are not controlled with treatment. This means people with epilepsy often need counseling and extra support from loved ones.8

Building emotional strength when living with the challenges of epilepsy might not be easy. However, it may make the hurdles you face seem more manageable. Finding the right balance of physical and emotional support is a good place to start. Practicing good self-care helps you build emotional strength and cope with the mental challenges of epilepsy.

Sexual health and epilepsy

Many people with epilepsy face extra hurdles when they wish to have a sexual relationship. That is because up to 2 out of 3 people with epilepsy feel some change in desire or behavior.9

Body image and self-esteem can take a beating among people with epilepsy.9

As with any health challenge, open and honest communication is best. Talk to your doctor about whether your seizure drugs may affect desire. Talking to a counselor or sex therapist may help you improve self-esteem and reduce self-consciousness, which may lead to more desire. You will also need to be open and honest with your potential partner about your diagnosis and daily treatment regimen.10,11

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Written by: Jessica Johns Pool | Last reviewed: November 2021