Epidiolex effectiveness?

[GMezz]

My neuro just floated the idea of trying Epidiolex to reduce the number of absence seizures I'm having. Does anyone have any experience with this?

 

[N Sperlo]

I worked in a pharmacy for 6 yeas and we shipped out a solid amount of Epidiolex. Since I was in logistics, I was the one to deal with the people with delayed or lost shipments, who in turn ran out of medicine, so I got a lot of info from them. Feedback I got on Epidiolex was that it was very effective in these specific patients.

When discussing the use of marijuana for seizure control, my neurologist suggested I could try Epidiolex since the active ingredients are CBD. I'm still on massive amounts of Keppra instead, but I at least know it works.

100%, given the chance, I would prefer to try Epidiolex before any prescription medication if mine wasn't working.

 

[GMezz]

Glad Keppra is working for you. It didn't for me and then my nuerologist switched me to Briviact, which had some better results, but hasn't been controling my absence seizures so, "no driving for me". I tried increasing the dosage from 200 mg per day to 250 mg per day and got worse! So then went lower (150/day) and got better. Those few data points almost make me think it would be better to reduce further but my current nuerologist is concerned of a break through Tonic-Clonic (for which I take Dilantin); haven't had one of those in many years.
I've been through the spectrum of Phenobarbitol, Tegretol, Depakote, Onfi, Zorontin (which was "Za-rotten-ist" medication ever - so I've been steady with the dinosaur drug Dilantin.
I used to work for the Dept of the Navy, so any CBD drug was a threat to my clearance; now that I'm retired, I'm considering giving this Epidiolex a try.
Did you find Epidiolex more troublesome than most in terms of shipment issues?
Thanks for your service,
Gary

 

[N Sperlo]

Glad Keppra is working for you. It didn't for me and then my nuerologist switched me to Briviact, which had some better results, but hasn't been controling my absence seizures so, "no driving for me". I tried increasing the dosage from 200 mg per day to 250 mg per day and got worse! So then went lower (150/day) and got better. Those few data points almost make me think it would be better to reduce further but my current nuerologist is concerned of a break through Tonic-Clonic (for which I take Dilantin); haven't had one of those in many years.
I've been through the spectrum of Phenobarbitol, Tegretol, Depakote, Onfi, Zorontin (which was "Za-rotten-ist" medication ever - so I've been steady with the dinosaur drug Dilantin.
I used to work for the Dept of the Navy, so any CBD drug was a threat to my clearance; now that I'm retired, I'm considering giving this Epidiolex a try.
Did you find Epidiolex more troublesome than most in terms of shipment issues?
Thanks for your service,
Gary

In regards to the shipping, Epidiolex will ship as a controlled substance, so the only concern is signature requirement for delivery. We really didn't have issues with particular drugs unless they were refrigerated.

Currently I'm on a massive dose of Keppra and a small dose of Trileptal.

Good luck!