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Do you have an appointment with your epilepsy doctor coming up, but are unsure how to prepare? Many people find it difficult to know what to ask when they see their specialist.
And that is especially true if you have only just been diagnosed with epilepsy. There is so much to learn, so many new words, and you might not have all that much time to speak with the doctor. Unsurprisingly, several studies have found that people have a variety of difficulties communicating with their epilepsy doctor.
To help you prepare, we have put together a list of 20 questions to ask about epilepsy at your next appointment.
How to prepare for appointments with a seizure doctor
Studies show that when patients are actively involved in their own treatment, they often have better health outcomes. In the past, it was common for doctors to simply tell the patient what they had to do, and the patient just followed instructions.
Active involvement means that the patient learns more about their condition, asks their epilepsy doctor questions, and takes notes when they see their doctor. They might also record information between appointments - such as how many seizures they have had (you can do this in the Epsy app).
Speak with your doctor about how you can become more actively involved in your treatment. They might suggest doing things like:
- Thinking of a list of questions to ask about epilepsy
- Taking plenty of notes during appointments
- Using an app like Epsy to record all your seizures and times you take medication, then show it to your epilepsy doctor
20 seizure questions to ask your doctor
Everybody’s experience of epilepsy is different, so you may find it valuable to think of specific questions about how epilepsy might affect you.
You may wish to use this list as inspiration to write your own questions to ask about epilepsy.
General epilepsy questions
- What kind of epilepsy do I have, and where can I learn more about it?
- Are there certain triggers for this kind of epilepsy that I should avoid?
- How can I protect myself from harm when I have seizures?
- What is Sudden Unexpected Death in Epilepsy (SUDEP) and how can I manage this issue?
Epilepsy medication questions
- Will I need medication to treat my epilepsy? What are the medications available?
- If I need medication, what might the possible side-effects be?
- How do anti-seizure medications work?
- What happens if the medication does not stop my seizures, or if the side-effects are unpleasant?
- What is the best way for me to record my seizures and times I take medicine?
Treatment questions
- What is refractory epilepsy?
- What non-pharmacological treatments for epilepsy are available?
Living with epilepsy questions
- Can I drive a vehicle?
- Can I participate in sports? If so, which ones might be safe for me?
- What precautions should I take when travelling with epilepsy?
- How will epilepsy affect my social life, and how should I tell people about my diagnosis?
- How will epilepsy affect my life at school, college or work?
- I’m feeling anxious, afraid or sad about my epilepsy diagnosis. What can I do about this?
Support questions
- How can my friends or family help me if I have more seizures?
- Are there any epilepsy support groups in my area?
- What is a seizure action plan and do I need one?
Learn more: Read about some of the most common epilepsy myths
Preparing for your next seizure doctor appointment
Because each person is different, you will almost certainly have specific questions to ask about epilepsy relating to your lifestyle, your age and personal situation. By taking a little time to prepare your next appointment, you can get the most out of the meeting and take an active part in your treatment.
