Juvenile Myoclonic Epilepsy

[frulati]

Hi everybody!

I'm Lisa from Greece, 31 years old and 4 years ago I was diagnosed with Juvenile Myoclonic Epilepsy, after suffering my first (and only) grand mal seizure. Since then I only have myoclonic jerks (they only appear after I wake up, lets say approx once a month). I was on depakine chrono for 2 years, but gained weight, lost lots of hair and energy, so together with my Dr. we decided to stop the meds. Since one year I'm med free! Now I'm planning on starting raw hemp oil drops (CBD+CBDa). Does anybody else in here have JME? Any tips on the drops? Thanks🤗

[AmyBadd]

Hi, I am another 31 year old with JME. Mine started at age 14 and I have to take Epilim Chrono. I have tried other medications, but they don't work, and my seizures have appeared again when I reduce my dose of Epilim, so unfortunately for me it looks like I will always be on medication

Good luck going med free!

Amy xx

[frulati in reply to AmyBadd]

Sorry to hear that! They say that JME is supposed to usually stop at some point of our live, so stay positive!! Do you have children?

[AmyBadd in reply to frulati]

I had my first little boy last year. Because I am unable to come off Sodium Valproate completely (but it is very dangerous to take in pregnancy) I went on as low a dose as I was able to. I was taking 1/2 the amount I currently take and I only had 2 tonic clinic seizures throughout the whole of my pregnancy.

[frulati in reply to AmyBadd]

That's great!! I was on sodium valproate, but I stopped it, because my doctor told me about all the riscs during a potential pregnancy. Glad to hear your boy is fine💙

[e-in-me]

HI Frulati, i've never had the same jme as you but your story is encouraging to others because of you coming off medication,hope all goes well for the future.

e-in-me.