@earlylonghauler and others re Briviac side effects.
Hi - my name is Cathy and have not been on this site for quite a while. Have been on just about every epilepsy med out there for refractory left temporal lobe autoimmune epilepsy. GAD65 Encephalitis is in the mix. Wasted 2 years trying many different meds and infusions to address the GAD65 Encephalitis and brain swelling...from long-term steroids, to Cellcept, to infusions, to Actemra injections. Nothing worked and all had side effects. So attention now turned back to my epilepsy. Have been on Onfi and Xcopri for years. Not a good mix because how they react with each other. Switched from NYU to Columbia and recently had a 8 day EEG at Columbia. Bottom line is I started Briviact, weaned off Xcopri and am on tiny amount of Onfi. Currently up to 75 mg Briviac two times a day and 5 mg Onfi. Drug interactions and side effects are complex and hard to pull apart what is doing what. And side effects are different for each one of us. My main issues now, besides ongoing seizures, appear to center around mood and depression. After a botched SEEG several years ago, symptoms of Abulia emerged. That has gotten worse and worse to the point that apathy, lack of motivation, and inability to initiate action cripples my life. Tried Amantadine and a few others . No help. Seeing a new specialist who is dually licensed in both Epilepsy and neurological psychiatry. Considered a trial of Concerta, but she wanted to trial Viibryd first. Recently started Viibryd and just increased doseage to 20 mg. Do I see a difference? Frankly, no but its too early to tell. Briviac also too new to see its impact on continuing seizures. Guess I'm trying to say that it's imperative to keep seeking and fighting, realize it's tiny bits of progress we seek, not perfection, and find and build a team of the best neurologists and specialists you can. Yes, it can be brutal, exhausting and never-ending. Yes, it's possible there's no answer out there for some of us with very complex cases. But I refuse to stop trying, and I do my best to cultivate a positive attitude and the gratitude for what I do have. Not easy or constant, but imperative for me. My heart is with all of you.