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Any Briviact experiences to share?
Epilepsy & Seizures | Last Active: Jul 2 5:51am | Replies (161)Comment receiving replies
@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
Replies to "@laura1961 Hi Laura, One thing I've learned on my epilepsy journey is that medications work so..."
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@santosha Hi Chris it takes me a while to get back to this site but good they send an email, as long as you see it with all the mail we get. I have been looking into the foods again with the keto diet, although it did not work for me. I have still stayed with that way of eating which i started in Jan 23 as I was not eating enough meat & needed to cut back on sugar, which has been very difficult. I have been trying to pick up health wise the last year after fracturing spine the end of 24 after a fall from a seizure. I am starting to feel a lot better & have started back with a physio for exercises needed for my Osteoporosis. I am just starting to look at the Drugs again but have not looked into the Epidiolex which i will do now. Thank you for you support it is very good of you sending the links which I read. I will look into Briviact too.
I had to put my mother into a home in 22 as I had been trying to look after her for a few years after she was left in pain 24/7 after her gallbladder was removed. I have been trying to focus more on myself. Thank you again & do stay in touch & I will do the same.
I saw a Neurologist after the fall & they wanted me to start Keppra again which I have not done. I tried so many drugs over about 7 years, it all gets very distressing at times.
Laura