Managing epilepsy is not just your doctor’s job — it’s a team effort! You and your family or loved ones are the most important people on your epilepsy team. You’ll need to work together with doctors, other health care professionals, and people in the epilepsy community to get the care that’s best for you.

Learning about epilepsy and understanding your treatment is key to helping you control your seizures. Here are a few tips on taking charge.

Before a health care visit:

  • Write down a list of your questions and concerns. Use a notebook, pad of paper, smartphone, seizure diary, or anything that works for you. Remember, it’s your epilepsy, so whatever concerns you have, write them down!
  • Take your list of questions to every visit. Then tell your doctor you’d like to talk about them. If he can’t answer your questions right then, set up another appointment — or ask if there’s a number you can call — to make sure you get answers. There are no stupid or silly questions.
  • Don’t be afraid to ask for help. Tell your doctor and your family if there’s something about epilepsy that you don’t understand or that you need help with (like remembering to take your medicine every day). Treating epilepsy can be complicated, especially when it’s new to you.
  • Speak up if you don’t understand something. Ask what medical terms mean instead of guessing. It’s important that you, your doctor, and the rest of your health care team are all speaking the same language!
  • Ask someone to go with you. It’s helpful to have a friend or family member with you to help you ask questions and remember what the doctor says.

After a health care visit:

  • Write down what you talked about and what you’re going to do next. If your doctor suggests that a change in treatment be made, make sure you know what to do. If you didn’t get answers to some of your questions, keep track of them for next time.
  • Learn about your seizure medicine. If you are starting a new seizure medicine, learn as much as you can about it, including when and how to take it. Check out this list of seizure medicines to learn more about yours.
  • Follow all the directions for your medicine. Take your seizure medicine every day, and make sure you’re taking the right amount at the right time. Otherwise, the medicine may not prevent seizures.
  • Talk to your family or loved ones. Go over what happened at the visit. If someone went with you to the visit, write down what they learned and what questions they have, too.
  • Explore It's a great place to find answers and to connect with other people with seizures and epilepsy!
Authored By: 
Patricia O. Shafer RN
Authored Date: 
Reviewed By: 
Joseph I. Sirven MD
Tuesday, October 28, 2014