Print out a handy checklist (PDF)
Being diagnosed with seizures or epilepsy starts a new journey in your life. This is true for both people with epilepsy and their family and friends. Each of you may have different feelings and needs, and it may take a while to figure out what these feelings and needs are. And, since the diagnosis of epilepsy is very dependent upon your observations, experiences and how you explain these to others, it's critical that people with epilepsy and family members learn how to manage all this information, and ultimately, how to manage the diagnosis.
To be a good 'manager' you want to feel confident that you know what the diagnosis means and what the next steps may be. However, doctors, nurses and other health care professionals often forget that most people don't speak their language! Medical terms can be pretty complicated and don't always mean what you think. When you talk to members of your team, make sure you know what they mean when they use medical terms. Ask lots of questions and remember that no question is too simple. Really understanding the language used and what this means for your situation will help you feel more confident in what you need to do next.
Another factor that affects how people manage their epilepsy is how they feel about it. A common reaction is fear or anxiety—of what may happen next, of what the doctor may say, of what the treatment may be, or of what the future may hold. Some people end up living with this fear, just waiting for the next seizure. In order to move forward, however, most people find it helpful to talk about their feelings and learn ways of managing their fear or anxiety. Once you've accomplished this, you can start learning how to take one step at a time and not let seizures stand in your way.
Tips for managing the diagnosis:
- Start a journal - write down observations of seizures, what others have seen and told you about seizures, your feelings, and your needs. The narrative information can help you organize your thoughts before visits with your doctor.
- Sit down with family members and make notes about your family history – does anyone have seizures or other neurological problems? Is there a history of learning, mood or behavior problems in the family? These are examples of questions that most people don't know until they ask so start asking!
- Take a close family member or friend with you to appointments whenever possible. It can be comforting having someone with you as you try to digest the information, and you may need help remembering all that is discussed. If you can't take someone with you, take your journal and take notes, or tape record the meeting. Then you can listen to what the doctor said at a later time when you may be less anxious.
- Write down questions in advance of your appointments. It's hard to remember your questions once you're in the doctor's office. Or use the form, 'Questions for My Doctor' to help you organize your questions ahead of time.
- If your doctor doesn't have time to answer all your questions at the first or second visit, ask for an appointment just to review results of tests and what they mean. Sometimes the doctor may recommend that you review this information with a nurse who is skilled in teaching people about seizures and how to manage these at different points in your life.
- Ask for copies of tests and visit notes. These may help you understand what has been done or what may need to be done next. It will also help you keep other members of your health care team up-to-date with what's going on.
- Once you understand which symptoms are seizures and what is not, start using a seizure diary to make seizure recording easier for everyone involved. Try our online seizure diary or one of the seizure diary forms (Event Calendar or Seizure Calendar).
- Make sure you take your notes and copies of your seizure diary to all appointments. This will help your doctor know how you have been doing.
- Start a 'To Do List' (PDF), specific to your epilepsy. (see form in seizure preparedness). You can use this to write down what the doctor or other people have recommended for you before your next visit or just keep track of important tips that you have learned.
- Join a support group and visit our online community to talk to other people in similar situations. Social support has been found to be very important to people managing a chronic problem like epilepsy.
Topic Editor: Patricia O. Shafer, RN, MN. and Steven C. Schachter, MD
Last Reviewed: 7/28/08