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Ask the Advocates: Your Care Team

Last updated: June 2022

When it comes to receiving epilepsy care, finding the right doctor can make all the difference. Whether it's having deep knowledge of anti-seizure drugs, being easily accessible for questions, or displaying a warm bedside manner – every patient has certain things that are important to them when it comes to selecting a healthcare provider. And where there is a good patient-doctor fit, trust, communication, and quality care can follow.

For some, finding that good fit may come more easily. But for others, it may be challenging to find a care team that works best for them. So we asked our EpilepsyDisease.com advocates: What kind of doctor (for example, neurologist, epileptologist)  do you see for your epilepsy care? And how do you feel about the care you receive from them?

Tell us about your care team

Illustrated portrait of Epilepsy advocate Derra Howard. "I currently am awaiting to see a new physician, an epileptologist. I used to see a neurologist, then I switched to an epileptologist. I only switched from my neurologist because I wanted to get off my medication correctly. And even though that was the plan, it did not work out as I imagined. It's all about how comfortable you are with your physician and vice versa. A doctor with a great bedside manner is extremely important, because if they don't care it will show. If you are able to ask the hard questions and your doctor is able to provide answers as well, that is always a good thing. I also really trust my primary care doctor, who is truly attentive. I can call his office if I need anything. Even though this is not my neurologist's office, he still takes care of me. I have my levels checked on a regular basis and he has an excellent bedside manner." –DerraIllustrated portrait of Epilepsy advocate Stacia Kalinoski. "I see a great epileptologist at Minnesota Epilepsy Group in St. Paul, Minnesota. She's personable and she booked some extra time for an appointment last summer so I could ask her questions about memory for a memoir I'm writing. She also responded to a few emails with more feedback. She goes in-depth when I ask detailed questions to learn more about my epilepsy. Last year she recommended I try an extended-release medication because I was getting dizzy with my normal dosage, and it made a huge difference. Game changer! It's such a relief to find a medication that works at a dose I can tolerate." –StaciaIllustrated portrait of Epilepsy advocate Miles Levin. "I saw well over 100 physicians by the time I was 18. It was not clear what caused my epilepsy so I was tested for anything under the sun. I saw many neurologists and they did not inform my family of the existence of epileptologists for many years: an experience many epilepsy patients have. Many doctors showed arrogance. If they did not know the answer, there wasn't one, and they were reluctant to refer us to someone who might. There was rarely any 'out of the box' thinking. It is important to see a specialist, and several, if you can." –MilesIllustrated portrait of Epilepsy advocate Nisshaa Muniandy. "When I was admitted to the hospital for the first time, I was looked at by general doctors. It took a year for them to appoint me to a neurologist. It was a roller coaster of finding the right medicine for my epilepsy. It took almost 5 years to get me the right medicine. My mum always had arguments with my doctors because each time they changed my medicine I would have seizures. My doctors were really calm and able to assist me with the medication. My doctors also put me into an epilepsy support group and they make sure I'm comfortable. I've talked to them a lot about my epilepsy which helped me to live better." –Nisshaa

Share your experiences

Tell us about your experiences with your epilepsy care team. Have you had any particularly good or bad experiences with doctors? What do you look for in a neurologist? Share in the comments below or in our forums.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The EpilepsyDisease.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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