Why do I need to manage my seizures?

For most people, seizures and epilepsy are chronic problems. Medicines can control seizures for many people, but it takes work. You need to do things like remembering to take your medicine, tracking your seizures, and finding out what triggers your seizures. And if medicine doesn’t work, it may take even more work to find other ways to manage seizures.

Managing your seizures means staying actively involved and taking charge of your treatment as much as possible. Your health care team and websites like epilepsy.com will give you a lot of information. Learning how to use that information is the next step in managing your seizures.

www.epilepsy.com is built on 3 important concepts to help you do this.

  • Information: Making sure you learn all you can about epilepsy
  • Community: Helping you connect with others who are living with seizures and epilepsy
  • Empowerment: Giving you the tools you need to be in charge of your epilepsy team and take action to manage your seizures

Check out the Tool Box for forms and resources to help you too!

What is epilepsy self-management?

Self-management of epilepsy includes everything you do that helps you manage your seizures and their effects on your daily life. It doesn’t mean you manage epilepsy all by yourself.

To manage seizures, you’ll need to work together with your health care team and your family. Everyone on your epilepsy team has a different role:

  • Your doctor and health care team diagnose and recommend treatment for your seizures.
  • You and your family bring your voices and experiences to the team. Information you have helps your doctor make the right diagnosis, recommend tests or treatments, and refer you to other doctors or resources that may help you.
  • You’re the one who has to live with your seizures, today and every day. How epilepsy affects you and your family will influence your doctor’s recommendations and your choices.

You and your health care team must decide together what your goals are — and make a plan to reach these goals. Then you and your family must gather information, learn “how to” skills, and find the right resources and supports to make it all work for you.

What affects my ability to manage my epilepsy?

How well you’re able to manage your epilepsy depends on many factors, including:

  • How confident you feel about managing your seizures
  • How satisfied you are with your care
  • How well you can talk with your health care team
  • How much support you get from family and friends
  • Your mood
  • Whether you feel “in control”
  • Whether your team works together to set realistic goals and plans

If you’re having a hard time managing your epilepsy, try to figure out why. Then you can take steps to change the situation. The “Get Help” information on epilepsy.com can help you learn self-management skills so you’ll know what to do.

How can self-management skills help me? 

Learning self-management skills may help you:

  • Talk to your health care team and others more easily
  • Keep track of treatments that you use to manage your seizures
  • Develop an individualized plan for seizure first aid
  • Know how to prevent seizure emergencies
  • Teach other people the best way to respond to your seizures
  • Stay safe
  • Change your lifestyle and environment to lessen seizure triggers
  • Have a healthy lifestyle
  • Recognize and manage other conditions associated with epilepsy
  • Recognize how epilepsy is affecting your life and what you can do about it

What do I need to do to manage my epilepsy?

First, set up your health care team and determine your own needs, readiness and priorities. Then go to Get Help section for more!

  • Understanding your health care team
  • Working with your health care team
  • Staying in touch with your health care team
  • Assessing your readiness, risks and needs
  • Setting priorities and taking actions

Now let’s get started! 

Authored by: Patricia O. Shafer RN, MN on 10/2014