Preparing for Your Neurologist Appointment
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How much information should you share?
People who are new to epilepsy often are unsure what to do when they meet with their neurologist. How much information should you share? Are new things that you are noticing related to your seizures? Should you tell the doctor about it?
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The answer is a profound yes!!!
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You need to provide as much information to your doctor as possible so s/he can more effectively make an appropriate diagnosis regarding your experiences. Whether it be something that other people can see, or feelings that are different, but subtle – or that don’t seem to be very important, you need to share it with your doctor.
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What your neurologist or epileptologist is looking for are clues to your seizures. They are trying to determine what happens when you have a seizure? How long does it last? What happens before or after you have a seizure and more. All these clues provide a better picture of what is happening in your brain, and if you are experiencing seizures/epilepsy, or if it something else.
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Here is a list of things to do/information to gather for you and your family before visiting the neurologist or epileptologist – whether it’s your first time, or simply an update to check your medication levels.
Things to do for a more successful appointment:
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Create a Seizure Diary - this can simply be writing information in a notebook, keeping a calendar on your phone, or using an app. This means:
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Keep a record of when your seizures take place - date and time.
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What were you doing before the seizure happened?
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What happened when you had the seizure? What did you do during the seizure? How did the seizure affect you?
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How long did it last?
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How did you feel after the seizure?
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How long did it take to recover from the seizure?
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Did you injure yourself?
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Anything else you feel your doctor should know.
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Keep a list of all the medications you are taking, for epilepsy or any of your other diagnoses. Record any side effects you are experiencing. Bring this to your doctor's appointment.
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Video the seizure: If someone you love is near you when you have a seizure, after they make sure you are safe, video the seizure. Share that video with your doctor. The video can help the epileptologist better understand what is happening in your brain when you are having a seizure.
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Determine if there is anything that seems to trigger your seizures. Flashing lights, medications you are taking, alcohol, or anything else that you notice you do, eat, or are around before you have a seizure.
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Providing your doctor with specific data about your seizures can help you get a more specific diagnosis and treatment sooner.
Preparing a list of questions will help you make the most of your time with your doctor. List your questions from most important to least important in case time runs out. For epilepsy, some basic questions to ask your doctor include:
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What is likely causing my seizures?
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What kinds of tests do | need?
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Is my epilepsy likely temporary or chronic?
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What is the best course of action?
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What are the alternatives to the primary approach that you're suggesting?
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How can | ensure that | don't hurt myself if | have another seizure?
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| have these other health conditions. How can | best manage them together?
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Are there any restrictions that | need to follow?
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Should | see a specialist? What will that cost, and will my insurance cover it?
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Is there a generic alternative to the medicine you're prescribing?
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Are there any brochures or other printed material that | can take home with me? What websites do you recommend?
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Other questions | want to ask:
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In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.