Hi @adavis27
Welcome to Epilepsy & Seizures on Connect!
I'm sorry you're going through this. What you're describing resonates with my own experience when Epidiolex was added to my regimen. At that time, I was on Vimpat (lacosamide), and as my Epidiolex dose was introduced little by little, my Vimpat was gradually tapered along the way. Every time my Epidiolex dose went up a bit, my Vimpat side effects got noticeably stronger — and every time my Vimpat dose was reduced, they'd ease again. My doctor at the time explained that Epidiolex can effectively amplify the strength of other AEDs in your system — and that might be what's happening to you right now. During that transition, I'd also get blood tests periodically to monitor my Vimpat levels, which really helped guide those adjustments.
Epidiolex has been the best medication in my treatment journey since it was introduced in 2021, two years after I started treatment in 2019. For me, as someone very sensitive to AEDs, it has far fewer side effects than traditional AEDs. The tapering process was hard, but worthwhile!
I'm tagging @keeg1010, whose son is also on Epidiolex, to share her experience when it was first introduced into his regimen.
How long ago was Epidiolex introduced into your regimen? And has your doctor already measured your other AEDs' blood levels since it was added? Have you been able to report these symptoms to your doctor? That conversation feels important right now.
Stay strong!
Chris