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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.

Have Any Of You Been On Phenobarbital Long Term For Your Treatment And Developed A Blood Disorder And/or Bad GI Issues?

A MyEpilepsyTeam Member asked a question 💭
Barre, VT

If so, did you transfer to a different medication that helped and how long did it take you to transition from the phenobarbital to the other medication.

July 31, 2024
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A MyEpilepsyTeam Member

I have slightly off blood values, and wonder if it is the Lamotrigine. Or XCopri.

July 31, 2024 (edited)
A MyEpilepsyTeam Member

I was on Phenobarbital for a long time , when I was a young. I was on it from the age of 2 - 19yrs of age. My pediatrician n neurologist tried taking me off it it around the age of 15 . My seizures worsened and he put me back on the Medication.

I never developed any blood disorders.

July 31, 2024
A MyEpilepsyTeam Member

I had to get off of it. My Neurologist put me on Tegretol, and I've been on it ever since. I also take Keppra.

August 1, 2024
A MyEpilepsyTeam Member

I have been on Pheno 3 times in my life. When I was a toddler, my mother said I was mean and irritable. I even bit people. I took it again in the 6th grade, but it's like I didn't know I was in the world at school. I also remember being mean to my cat and my dog. It just made me a mean person. And I tried it as an adult one more time, but I started not liking my self as a mother of a small child and I had to get off. That was it. It makes me mean.

July 31, 2024
A MyEpilepsyTeam Member

I’ve been on pheno for 7 years. I just started having GI issues but I thought it was from Epidiolex. No blood disorders. Have you had both?

July 31, 2024
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