Loose on occasion, but I've changed my diet to more fresh or raw greens, fruit, and less sugar and carbs. I avoid processed foods. If loose bowel problem is bad, I was told by the epileptologist to use Imodium. Loose bowels or diarrhea can dehydrate you quickly. I guess this is the most common side effect of Epidiolex.

Thanks for the replies. We'll see. I'll ride for the Summer. If I start having generalised seizures then the meds are doing nothing (that we can prove), so I'll stop and live without the side effects. The VNS does certainly react - circa 5 seconds after an event starts. Whether it does anything to reduce the intensity only riding a bike like I did and seeing will discover. It has not reduced the number of events that its algorithm supposes in almost 5 years. Personally speaking, I think (after so long) I'd rather the occasional generalised seizure than the side effects every single day of my life. Each of us is different on that.

my sone was denied epidiolex last year. however the pharmacist that works with it said banana flakes were great at countering the loose stools, sound weird but she insists it works. Heres my beef- they take a grat natural cbc , isolate it and change it into a synthetic and needing huge amounts to get similar effects of natural cbc. All to capitalize on classifying it as fda med and big $$$$

I never had a Neurologist that did anything more for me then make me try different meds.

If we don’t take our medication, our seizures can worsen than what they already are.