Connect
← Return to Any Briviact experiences to share?
Discussion
Any Briviact experiences to share?
Epilepsy & Seizures | Last Active: Jul 2 5:51am | Replies (161)Comment receiving replies
Please post Briviact Side Effects here. I’m hoping this can be a reference for others.I was diagnosed 2 years ago. I was on Keppra for first 2 months - no seizures but I got Keppra Rage. Then Lacosamide for about 9 months - mood was good but it did not stop seizures. Started Briviact about 7 months ago - it stopped seizures right away. Side effects were also immediate. The sensation of metal in my head. It would come and go but last for hours. Nausea daily - when it comes, I have to put my head down on the table and wait a few minutes for it to go away. The newest and most bothersome so far is intermittent sensations of formication around the L ear - like tiny little hairs feeling static … or tiny ants crawling in and around my ear. And weight gain. Have reported all side effects to Neuroloigst - they are not familiar with the metal sensation, formication, or weight gain on Briviact. So far, I’m putting up with these side effects - beats seizures - but at same time hope a different Rx or blend of Rxs may work with fewer side effects.If you have Briviact side effects, please post!
Replies to "Please post Briviact Side Effects here. I’m hoping this can be a reference for others.I was..."
Connect
@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.