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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.
A MyEpilepsyTeam Member asked a question 💭
Romania

Hello everyone! I want to ask if your neurologist has told you everything about epilepsy, what its effects are, how it affects your daily life, what to do to counteract the side effects of medications and even epilepsy itself?

December 4, 2025
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A MyEpilepsyTeam Member

Neurologist won't tell you the whole thing because seizures vary from one person to the next. Even if they have the same seizures. Sometimes it helps to do your own research.

December 4, 2025
A MyEpilepsyTeam Member

You were lucky. They didn't tell me and I found out on my own after many years. Can you imagine how frustrated I was

December 4, 2025
A MyEpilepsyTeam Member

Almost all of my epilepsy "education" I have had to research on my own. The brain is so complex. The doctors can just look at the data in front of them. If they don't see a seizure taking place on an EEG, well - you aren't having a seizure. It's taken a while (just over 1 year), but I finally feel like I am on the same page as my doctor. Again, the brain is so complex.

December 6, 2025
A MyEpilepsyTeam Member

nope, actually the more time pass and the more experience i get from my seizures it feels like doctors hide mostly 50%-60% from me

December 5, 2025
A MyEpilepsyTeam Member

Yeah , they didn't really tell me what the cause was of mine

December 4, 2025

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