Your Role in Epilepsy Treatment
Managing epilepsy requires a team approach including your role in treatment. You and your family or loved ones are the main players on your team. As you takes steps on your journey you’ll find other healthcare professionals and community supports who will be very valuable to you.
Learning as much you can about epilepsy and it’s treatment will be key in helping you control seizures. The treatment won’t work by itself. YOU and your team will need to work together to make it work. Below are tips on what to do first.
Before Your Doctor's Visit
Before your doctor’s visit, write down a list of your concerns and questions. Use a notebook, pad of paper, smartphone, seizure diary, or anything that works for you! Remember, it’s your health so whatever concerns you have, write them down!
Your role in treatment may include:
- Creating a list of symptoms and observations
- Questions about seeing a specialist or epilepsy center
- Bring a list of current medications and supplements
Download helpful factsheets about treatment, fillable resources, and more for your appointment.
During Your Appointment
Take your lists and notes to every visit. Then let your doctor know you'd like time to talk about them. If they can’t answer the questions you have at the time, set up another appointment to make sure you get them asked, and answered! There is no stupid or silly question.
Don’t be afraid to tell your doctor, and your family, that there are some parts about epilepsy that you don’t understand or that you need some help. Epilepsy can be complicated, especially when it’s new to you.
If you don’t understand the information given to you, tell them! Info is no good if it’s not explained in a way you can understand. Ask what medical terms mean, don’t guess. It’s important that you, your doctor and team are all talking the same language!
Learn More:
Medication Tools and Telehealth ChecklistAfter Your Visit
After you visit your doctor or healthcare professional, write down what was talked about and what you’re going to do next. If a change in treatment is being made, make sure you know what to do and write it all down. If some questions didn’t get answered, write them again for next time.
If the doctor recommends a seizure medicine, learn as much as you can about it, including when and how to take it. It is your role in epilepsy treatment to follow the doctor's directions. Seizure medicines must be taken each and every day as prescribed. If the right amount is not taken at the right time, the medicine may not be able to prevent seizures.
Make plans to follow up with your doctor and also assemble a healthcare team as needed. Additional support may be needed for diagnosis, treatment, and more.
Another way to stay active in your treatment is to talk to your family, loved ones or whoever helps you with your epilepsy. Review what happened at the visit and write down what things they learned too or what questions they have. You may also want to repeat and discuss explanations of terms and concepts explained to you.
As part of your treatment plan, be prepared to take part in the following:
- Notes about changes in symptoms
- Medication schedule
- Scheduling follow up appointments
Browse around Epilepsy.com - it's a great place to find answers and to connect with other people with seizures and epilepsy!
Learn More:
Finding the Best Dosage of MedicationResources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures Helpline
Call our Epilepsy and Seizures Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.
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