For most people, epilepsy is a chronic medical condition. One part of epilepsy management is control of seizures. Another part is managing how epilepsy affects other parts of your life.
Being at the center of your care team makes you the most important member. Here are possible care team members you may surround yourself with to make decisions:
A epileptologist is a neurologist who has extra training in epilepsy.
A pharmacist may help you manage your epilepsy medications and any other medications you may be taking.
A primary care provider (or PCP), such as a family doctor, nurse practitioner or physician assistant, may be the first healthcare professional you see after you have a seizure.
A nurse may work with you and your doctor to help manage your epilepsy.
A neurologist is a doctor trained in brain disorders, including epilepsy.
Good communication between you and your care team is important. Your family and friends can talk to your care team too. You might want to have someone go with you when you have a healthcare appointment. This person could help support you, remind you to ask questions, and take notes while you talk to your doctor. Or, if your doctor allows, you could record the discussion.
Remember that you are the most important member of your healthcare team. You need to feel comfortable asking questions. You can call anytime to ask questions. Or, take a list of questions with you when you go to an appointment.
Don’t be afraid to tell your doctor, or another member of your care team, if you have any questions about your medication. There are no bad questions.
You might feel like you have to take too many pills each day. If you feel this way, ask if there is any way to decrease the number of pills you take.
If you are having side effects that bother you or stop you from taking your medication, tell your doctor. Ask if there is anything that can be done to help you feel better.
Taking your medication regularly is important for seizure control. That means taking the right amount (the right number of pills), at the right time (for example, twice a day), in the right way (for example, with or without food).
Are you following directions on the bottle or in the pamphlet you receive with your medicine? If not, tell your doctor. You can work together to figure out what stops you from taking your epilepsy medication correctly.
If you are not taking your epilepsy medication at all, tell your doctor so you can talk about the reasons and discuss whether lifestyle changes or medication changes are best.
Have you told your doctor what your treatment goals are? It’s important to be on the same page. This way, you can work together to find the best medication to reach your goals. You and your doctor may have different goals, so be sure to ask them what their treatment goal is for you.
Having appointments digitally (using the internet) is becoming more common. Remember these tips to get the most out of your video chat or telephone appointments: