Choosing the Best Epilepsy Doctor for You
Last updated: November 2023
Are you looking for an epileptologist? Or are you not satisfied with the neurologist you are seeing? What kind of attitude are you looking for in your doctor? A doctor with a bedside manner that appeals to you? Or perhaps you like to hear detailed, in-depth descriptions about your treatment options?
Before choosing a new neurologist or epileptologist, make sure they have that qualities that are important to you.
Who is the best doctor for you and your epilepsy?
Personally, I couldn't take it when a doctor I saw in 1998 wanted to restrict me from so many things. All I showed was anger to my parents after every appointment. He told my parents I couldn't be in a basketball league or ride a bike.
He wanted to restrict me from almost everything physical. Not joining the Forest Hills pool club, even! I wonder if he even would have told my parents to not let me catch fireflies at night! It felt over the top.
I want a doctor who explains everything to me
I also do not like it when all a doctor wants to glaze over things at appointments. Telling you what medication they want you to try, and, "Don't worry, it'll be fine." Nothing in depth. Raising the dosage of a medication? "It'll be fine."
I want more detail than that. I want to know the possible side effects. I flash back to how many times I was hospitalized for my phenobarbital levels being high. I wish this had been explained to me at my doctor's appointment.
I want a doctor to think about quality of life
What I really value in an epileptologist is them speaking seriously and in depth, and not just focusing on my seizures but on my quality of life. As I remember hearing mine say, "You don’t want to go on another medication that's sedative. Come on, you're on two central nervous system depressants already." Working together with thoughts and feelings and opening you up to speak – that's important in a relationship with your doctor.
How to find a new epilepsy doctor
I took advice from 2 faculties I know well at the hospital I attend. The doctor I saw for 23 years and a nurse I've known for 25 years. They both recommended the same doctor. Young and a little new, but a great match with similarities to my former doctor.
If looking for an epileptologist or other doctor, it is good to get advice from a doctor or nurse that you already trust. Your local Epilepsy Foundation is also available for help or information.
Here's my advice when you're looking for a new epilepsy doctor:
- Don't feel pressured.
- Don't feel ignored.
- Don't feel speechless.
- Don't feel confused.
- Don't feel self-doubt.
If feeling any of the above with your current neurologist, there is a need for a conversation with them.
Ask questions – you deserve to know
If a doctor is not recommending surgery or specific medications when seizures are more active, do not just leave the appointment confused. Ask why. There could be a reason. If you do not understand something, do not feel ashamed to ask, no one knows everything. Stay strong.
Remember that doctors are also human beings. If having a bad day at work or an event happened at home, people get moody and show it, or act a little different than usual at times. This happens.
The best doctors for epilepsy offer 2 things...
The important part is that you are being treated respectfully, that the doctor has enough experience, and that they listen to you and do not ignore your concerns. I say the 2 most important characteristics of an epilepsy doctors are: 1) health, and 2) help.
Everyone will have difference preferences when it comes to choosing an epileptologist or neurologist. My advice is to lead yourself in the right direction to receive the right treatment from the doctor who is right for you.
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