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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Genetic Epilepsy And Medication

A MyEpilepsyTeam Member asked a question 💭
Gatineau, QC

When it’s a genetic epilepsy (PCDH19) does that mean that I will always take medication my whole life? As I know that most anti-seizures drugs have long term consequences when taking for a long time.

March 11, 2023
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member They have to think about both situations all the time. It is easier if you are under control because then you can focus more on managing side effects, but if it's not you have to manage both.

March 11, 2023
A MyEpilepsyTeam Member

Hey, if you've had the genetic testing and it's been broken down to the phenotype then you pretty much have it sorted med wise - yes, you'll be on meds the rest of your life but you'll be on the right meds at the right dosages with minimum side effects.
Any medication has side effects.
Eating too much avocado has side effects so hey, I personally don't care if none of my organs are salvageable after my demise but I WOULD rather it be a timely than untimely one 😉

March 11, 2023 (edited)

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