Epidiolex: Do you take it? Side effects?

Hello, Carnation, My adult son has been taking Epidiolex for about a year. He also remains on Dilantin and Celontin, both of which he has been on for many years. Before, he was taking Medical Marijuana instead of Epidiolex. The Med. Marijuana was slightly more effective (he had a fewer seizures), but much, much more costly. The Epidiolex does help control his seizures, which occur only when he sleeps or dozes. He was diagnosed with Lennox-Gestault Syndrome a few years ago based on his symptoms (not on his EEG). The main side-effect we have noticed is drowsiness. Best wishes to you if you decide to try it!

Thanks for the Information. 😁❤️

My daughter was on it and I noticed she would get dry heaving from it. We would give a heavier dose at night because that’s when she has her seizures. But if she woke she would be dry heaving. She was only 6 when she took it but compared to the other stuff she’s on i didn’t see much more of a change/side effects. She isn’t on it anymore because unfortunately it didn’t control her seizures. Best of luck!

Hi @carnation
I believe we haven't had the chance to interact directly yet — I know this is an older discussion, but I wanted to add my own experience in case it's still helpful to you or others reading.
I have temporal lobe epilepsy with mesial sclerosis — which can be highly refractory — and have been taking Epidiolex for more than 5 years now, after trying 5 different traditional anti-seizure medications that either worsened my seizures or brought very difficult side effects.
At first, I took it alone, but it wasn't enough on its own to stop all my seizures, so a low dose of a traditional anti-seizure medication was added later, and my seizures now seem to be under good control. I'm also very conscious of my triggers and pay careful attention to them — every time I disrespect them, my epilepsy somehow says to me "do not forget me." It's been the best treatment so far since my diagnosis in early 2019. The side effects are far fewer than what I experienced with traditional anti-seizure medications — my main one is dry mouth.
Have you tried Epidiolex since you started this discussion? I'd love to hear how things have gone.
Chris

Hi Kerry,
It would be wonderful if you could also join this discussion and share the benefits @keeg1010 has been having since starting on Epidiolex.
Thank you!
Chris

Hi @pamelastewart5,
Nice to meet you!
Before starting pure CBD, I was also on medical marijuana with very low THC and like your son's experience, it controlled my seizures somewhat better than just pure CBD. But since there are quality and consistency issues with that kind of medication here in my country, my doctor switched to pure CBD/Epidiolex.
How has your son been doing on Epidiolex overall? Has his seizure frequency improved, and has the drowsiness gotten any better over time?
Chris

@carnation Hi! My son, Keegan, was diagnosed in 2020 with adult-onset Epilepsy (MRI showed Mesial Temporal Sclerosis). MTS is very resistant to typical AED's. We tried many different ones but they either didn't work or they caused such severe side effects that my son ended up in the hospital. He is 28 and has been on since 2022. He does take Lamotrigine in addition to Epidiolex. When we added the Epidiolex, Keegan was seizure free for 2 years. He does have break through seizures still but they are much less than they used to be. One thing you need to know is the Epidiolex is temperature sensitive. We ran into an issue where the pharmacy was sending it to us without refrigeration, which made the medication unstable. Once we corrected that, Keegan has not had a seizure since March of this year (Fingers crossed). When starting Epidiolex, Keegan did experience diarrhea for the first 3 weeks while his body was adjusting. Since then, no noticeable side effects at all. I hope this helps. Always feel free to ask more questions.
Kerry

@keeg1010
Hi Kerry,
Thank you so much for joining this discussion and sharing Keegan's journey on Epidiolex! 💜
Two years seizure-free, and now seizure-free again since March — that's truly wonderful news, especially given how resistant MTS (mesial temporal sclerosis) can be to typical medications.
You brought up such an important point about Epidiolex being temperature-sensitive — it was actually your experience that made me rethink how I was getting mine. Thank you so much! 🤗
Before, I bought it directly from a manufacturer, which delivered it to my home without proper refrigeration care. But after hearing what happened to you, I switched to a different manufacturer and now buy it directly at the pharmacy here, where I know it's properly refrigerated the whole way. Since then — February 2026 — I've noticed a huge change in my seizure control. I've just had two mild focal seizures: one caused by pain before a surgery that kept me from sleeping, and the other from a period of significant stress.
Chris

@santosha I am so glad that was helpful to you. Epidiolex is very sensitive to heat and becomes unstable if not shipped correctly. Being in Arizona, we have to have it sent with ice packs, since the delivery trucks do not have air conditioning and it can be on a truck in 110 degrees all day. I am so glad to hear that you've only had two seizures since February of this year. That's amazing! Sending love and hugs, as always!
Kerry