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Any Briviact experiences to share?
Epilepsy & Seizures | Last Active: 2 days ago | Replies (40)Comment receiving replies
Are you still on Briviact? if so how has it been working for you? I have done a lot of research on these drugs & side effects too. I tried various drugs for 8 years which did nothing or made my seizures worse. My seizures were caused 20 yeras ago after a TBI caused by numerous blows to the head by my x. I finally stopped all meds in 2012 so have been doing some research to see what the newer drugs are like. They all still sound like they have terrible s/e & you have to take numerous drugs together. I thought may be this Briviact you could take as a single drug on it own? Thank you for sharing
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@laura1961
I’ve been seizure-free on Briviact for 2 years now. It’s the only E med I take. It does have side effects but I’d rather have the side effects than seizures. My only concern with Briviact is it’s cost and availability. It’s a new med, only made in Switzerland by a single manufacturer, no generics. Keppra on the other hand is widely available as a generic. I think Keppra is the gold standard these days. Keppra worked for me, so there may be Keppra again in my future. Neurologists like to find a single med that works for you - more predictable - but we did discuss a possible mix of Keppra and Lacosamide in case Briviact did not work. Briviact worked for me right away. At the time I was averaging a seizure every other week, and Briviact stopped all seizure activity immediately. In a sense I took the side effects as reassurance that it was working.
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@laura1961
Hi Laura,
One thing I've learned on my epilepsy journey is that medications work so differently for everyone — even people with the same type of epilepsy. What helps one person might not work for another, and vice versa. As my doctor always reminds me, each body is unique.
I was actually terrified to start Keppra after reading all those stories about "Keppra rage." But thankfully, that hasn't been my experience at all. Of all the typical AEDs I've tried, Keppra has given me the fewest side effects. That said, I know others with temporal lobe epilepsy (same as mine) who couldn't tolerate it at all.
Have you had a chance to explore Epidiolex (FDA-approved CBD) or pure CBD? My previous doctor prescribed pure CBD for me (Epidiolex isn't available in my country yet), and I've continued taking it since then. It's helped with my seizures with minimal side effects.
Here's a post from Kerry that might interest you: https://connect.mayoclinic.org/comment/1502120/
Her son has refractory epilepsy and has been doing really well on Epidiolex.
Chris
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