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Has Anyone Heard Of A New AED Med Called Epidiolex.

Has Anyone Heard Of A New AED Med Called Epidiolex.

The FDA is suppose to be approving this new medication. From what I read there is suppose to be cannabis in this. Is that true or is it a synthetic version of cannabis. If anyone has an appt, maybe bring it up and get some info off it. I would like to know more about this. I’ll even try and remember when I have my next appt. Thank you

A MyEpilepsyTeam Member said:

Hi Randy ,
I posted on the main thred. I have a lot of experience with the it from my advocacy. and Seen the presentations at conferences....I posted my opinion on the other thred. Over all a win for us but I am not a cheerleader. I think whole plant is better. I am equally as frustrated with the FDA process.....GW would have made a much better solution if the restrictions were not so crazy......And I wish the FDA would finally remove MSG from any Food product. How can they restrict CBD and allow open wholesale MSG which is a 100% proven toxin and health risk for us....The FDA even admits it but refuses to delist it because we are a small part of the population....that was their argument not my speculation .....and yes I am horrified to this day. Epidolex is a win!!! but I say that with caution because it has been a tough ride and controversial.

posted about 3 years ago
A MyEpilepsyTeam Member said:

We just got the Epidiolex.
It a 99% purified CBD put in seasme oil with strawberry flavoring.
It tastes and smells horrible.The dosing for it is based on weight.
An adult would take a lot of it vs whole plant CBD
Too soon to say if it works.
Its very expensive without insurance.

posted about 3 years ago
A MyEpilepsyTeam Member said:

Hi @A MyEpilepsyTeam Member, @A MyEpilepsyTeam Member and @A MyEpilepsyTeam Member. I really hope that you all have a brilliant seizure free day but my advice is never to ponder on whether you might have a seizure but to just focus on having a great day and try to forget about epilepsy and instead push it to the back of your mind and keep yourselves so busy with other enjoyable activities that you can relax into what keeps your mind active and enjoy the day to its fullest.
You all have a brilliant day. Enjoy 😉
@A MyEpilepsyTeam Member

posted over 3 years ago
A MyEpilepsyTeam Member said:

Why can't you grow one like a tomato plants, etc. in the garden?? hahaha

posted over 3 years ago
A MyEpilepsyTeam Member said:

I've been taking epidiolex for a year now. My doctor told me they had to change the classification from a stage 1 controlled substance. I guess it was made lower. The hardest side effect is diarrhea in which I control with imodium and this prescribed powder for ibs. For me it has been worth the side effect being it helps control my seizures well. I take 1200mg am 1200mg pm.

posted 10 months ago
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