Connect
← Return to Any Briviact experiences to share?
Discussion
Any Briviact experiences to share?
Epilepsy & Seizures | Last Active: 4 hours ago | Replies (143)Comment receiving replies
And with respect to Briviact, I am up to 75 mg 2 x day (plus 5 mg Onfi). Stopped all Xcopri. One always has hope for improvement, and this was a major change for me to leave my long-term epilepsy provider/hospital for something and someone brand new. Very disappointing, however, that I am now having a lot more seizures since the 4/26/26 increase (from 50 mg 2x day) to 75 mg twice/day. In May I had 10 seizures (plus one on 6/1). That compares to 2 in April. I'm actually back where I started 5 years ago with prior provider -- looking at viability and safety of RNS or actual resection. No SEEG this time, but other types of pre-surgical testing would be necessary. Sigh....
Replies to "And with respect to Briviact, I am up to 75 mg 2 x day (plus 5..."
Don’t go sigh. I always thought finding any right combi of things one doesn’t to lessen seizures or lower the intensity/frequency is like hitting a jackpot. Will it happen within our lifetime? We don’t know. But let’s not stop trying when we still can.
“Today is only one day in all the days that will ever be. But what will happen in all the other days that will ever come can depend on what you do today.” - Hemingway
Don’t give up hope just yet. At least during your final breath, you can still tell yourself you did try.
Connect
@cathy5161
Hi Cathy,
I'm so sorry to read this. What a difficult stretch you're navigating right now.
Making the decision to leave a long-term provider takes real courage. But as we say in Brazil, "quem não arrisca, não petisca" — nothing ventured, nothing gained.
You once mentioned having tried every epilepsy medication out there. Has your new doctor considered Epidiolex or pure CBD oil? Like you, I have refractory temporal lobe epilepsy, and adding CBD alongside an AED has been the best treatment out of everything I'd tried before. It may not be the answer for everyone, but it might be worth a talk with your doctor.
I'm also tagging Kerry @keeg1010, whose son had very difficult-to-control seizures and found success with Epidiolex combined with an AED. Her experience might also offer you some insights.
Sending you much strength. You're not alone in this!
Chris
View Translation