Has Anyone Tried Or Know Someone Who Is Using Epidiolex? | MyEpilepsyTeam

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Has Anyone Tried Or Know Someone Who Is Using Epidiolex?
A MyEpilepsyTeam Member asked a question 💭

So soon I am going to have to change meds and I don't want to but I don't have any other choice.

posted August 17, 2020
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A MyEpilepsyTeam Member

It's the only pharmaceutical CBD approved by the FDA in the United States, but from the UK. At this point the only testing that can be done with it is on all of us. I havent really heard anything bad either. My Specialist was actually excited about it, and raved it even though it isnt an option for me. Was kinda funny. He just HAD to tell someone about it, and I think I am one of his few who has questioned him about Cannabis. Like doctor version of Old Lady Gossip.

posted August 18, 2020
A MyEpilepsyTeam Member

I had not heard what this is until I just googled. CBD. I've seen a lot of comments here that have been positive. I also read that it can be used Here in Canberra it hasn't been long that it has been legally available. I did ask my neurologist he isn't against it but he does believe that there needs to be more research done on it. He also said that we can only get it from the UK and they are taking advantage because he said it would cost me $60 000+ per year. I have recently been asking people I know if they grow cannabis or know people that can be trusted not to do hydroponics just grow it in their back yard. I'm getting desperate these days

posted August 17, 2020
A MyEpilepsyTeam Member

I have LGS

posted September 9, 2020
A MyEpilepsyTeam Member

It is approved for the USA, but only 2 conditions can use it. I believe LGS and Dravet.

posted August 30, 2020
A MyEpilepsyTeam Member

It was I think last fall.

posted August 27, 2020

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