Moderator: Patty Osborne Shafer RN, MN, is an epilepsy clinical nurse specialist at the Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center in Boston, and the associate editor and community manager of epilepsy.com.

Speakers:

  • Nathan Fountain MD is a professor of neurology and director of the Comprehensive Epilepsy Program at the University of Virginia and chair of the Epilepsy Foundation’s  Professional Advisory Board
  • Sandra Dewar RN, MS, is a clinical nurse specialist at the Seizure Disorders Center at University of California in Los Angeles. 

What You Can Do

You are an important part of your health care at each step in your journey with epilepsy. Here are some tips to help you manage your seizures at the beginning of your journey.

  1. Learn what a seizure is, what epilepsy is, and what the doctor thinks is happening to you.
  2. Learn about the different types of seizures and epilepsy syndromes to understand what is happening to you.
  3. With the help of your friends and family, begin to recognize when you have a seizure and what that experience is like for you.
  4. Learn about the diagnostic process and tests that are likely to be performed, how to prepare for them, and what they mean.
  5. Learn about safety and first aid.
  6. Ask about driving. Take steps to find alternate transportation if you can’t drive.
  7. Talk about what’s happening with your family and friends.
  8. Family and friends are impacted too. They care about you so they may worry about your next seizure. You may need to depend on them for help, such as for driving you to multiple appointments. Invite your family and friends to ask you questions and share their feelings with you.
  9. Ask a family member or close support person to go into appointments with you to listen to what is said and help you ask questions.

When a first seizure is an emergency, then you will need to take additional steps, including:

  1. Ask what tests were done in the emergency room or hospital and get copies of records and tests.
  2. Get all instructions in writing, especially if a medicine is being started.
  3. Ask for specific instructions on what to do if another seizure occurs, when to call for emergency help, or when to return to the hospital.
  4. If a rescue therapy is given to you (for example, a medication to take for a few days or if you have another seizure), than make sure your family or those closest to you know what to do, as well as when and how to use it.
  5. If a seizure medication is given to you to take daily, ask the hospital to give you enough medicine to last until you can get a prescription filled at the pharmacy. You may need to get a form completed by your doctor for insurance coverage of the medicine too.
  6. Make a follow-up appointment with your primary care provider and a specialist. If the events were seizures, a neurologist should be seen for follow-up care.