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Epidiolex: Do you take it? Side effects?

Epilepsy & Seizures | Last Active: 4 days ago | Replies (9)

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@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

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Replies to "@carnation Hi! My son, Keegan, was diagnosed in 2020 with adult-onset Epilepsy (MRI showed Mesial Temporal..."

@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