Any Briviact experiences to share?

@tvandongen
Welcome to our group at Mayo Clinic Connect!
I'm so sorry you went through all of that, and I'm honestly shocked by how you were treated. The fact that your neurologist told you it was "all in your head" after you clearly had severe side effects is deeply concerning, especially after not seeing you in person for 6 years. In my opinion, that's not acceptable medical care!
Have you considered looking for another neurologist? You deserve better care!
Chris

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!

@earlylonghauler So this medication was a no go for me. I don’t tend to have the same side effects as other people that take medications. Mine are somewhat worse, and sometimes the side effects are not listed as ones that they would list on the drug website or the black box website for the drug. I experienced severe bruising all over my body. We’re not talking just a couple bruises were talking the entire body was covered in bruises. It looked like I was beat up or ran over by a truck and the bruises were bad and very ugly. I also became very aggressive and paranoid. I had never experienced anything like this before, and it was rather disturbing. I would say things that were extremely hurtful to people and not even remember seeing them. For me it was a no. I got off the medication as soon as possible because eventually I didn’t want to eat, and became so thin, I could barely function. I tend to be drug resistant to a lot of these medications, which can be a blessing and a cursing. In this case, it was a blessing because I don’t want to live with any of those kinds of side effects. I also tend to read a lot of medical journals and any kind of warnings with regards to medication’s like this because it one point after I stopped that medication and it was put on another one by my eleptologist, at the time, I know there were warnings for this drug, if I can remember where I saw the specifics, I will post them back on this site so that others can see them. I know every drug has the side effects listed, and some drug also have the black box warning. I read a lot of these things to know what kind of drugs I am taking and how they’re going to affect me and what the studies are on them. I realize that medication’s work differently for everyone and not two people are the same. So what may work for one person doesn’t necessarily work for another person and vice versa. It’s also extremely important to bounce some of these ideas off your doctor to see what is going to be a best better and not good fit. For me it was not a good fit and I was glad that I got off it and once I did, everything improved. I hope this is helpful for you if you have any questions feel free to ask.

I'm sorry you have been feeling this way, @tvandongen !
I've had my share of frustrating experiences with doctors during my epilepsy journey too, so I completely understand why you're hesitant at this moment.
A truly good doctor won't just take what's written in your previous chart at face value. He or she will look at your actual test results, ask you questions, listen to your story, and do his or her own assessment. This doctor might even order new tests to get a clearer picture of what's going on. That's what good medical care should look like!
Please don't give up on finding appropriate and specialized care! Do you happen to have any neurologist recommendations yet, or are you still in the search phase?
Chris

I wonder if Briviact is interacting with something else you are taking?

It is very interesting that you had almost the exact same experience with those three drugs as my daughter. We assumed Keppra was contributing to her anger/suicidality but weren't offered any different. When the dose was quadrupled, it became obvious and she was put on Lacosamide which didn't stop the seizures and then Briviact instantly stopped hers too! She had immediate HORRIBLE side effects that mostly fell under the category of vertigo and she couldn't function. She was also on Wellbutrin and when that was removed (there is a known interaction), she was mostly fine. She is nauseous but she has dealt with that since the onset of seizures. She hasn't been on it long enough to know if it causes weight gain but I hope it doesn't.

I very much agree with @closetmonster93 when she says "I realize that medications work differently for everyone and not two people are the same. So what may work for one person doesn’t necessarily work for another person and vice versa". Each body is unique, as my doctor tells me. I also tend to be drug-resistant to a lot of these medications, having already tried Lamictal, Tegretol, Trileptal, Gabapentin and Vimpat, which caused me more harm than benefits. I have been taking Keppra since last December. At the beginning, I struggled much with the side effects, but little by little with the fine-tuning and dosage reductions done by my current doctor, I have been feeling better. My doctor says that my body works like a child's, respecting it and not following the standard protocols.
@earlylonghauler, I am sending you here a Mayo Clinic link containing information on Briviact. The ones I read from other AEDs on Mayo Clinic site were more complete than the leaflet that accompanies the medication.
https://www.mayoclinic.org/drugs-supplements/brivaracetam-oral-route/description/drg-20311305
Chris (@santosha)

Hi, @earlylonghauler - wondering how it's going with the
brivaracetam (Brivact) and the side effects you were experiencing?

Metal head and nausea continue. I saw a NP for the tingling or formication around L ear. She prescribed Claritin to see if Eustachian tubes drain, it helped. I also got a new pillow - noticed the tingling was worse when I lay on L side. Was using a memory foam contour pillow and I think the contour was not a good fit for me. Either way, the tingling has subsided.

I started taking Briviact in sept 2023 after taking Topamax, lamictal , lacosamide and I’m sure others but I can’t remember what . When I started briviact my vision started getting blurry and then I became legally blind over the next few mos . I started having blephorospasms and getting shots for those , my migraines were worse than they’d ever been and my face started getting droopy on one side . I was also so sensitive to light that I had to wear sunglasses all the time . I kept being told you’re just getting older . I’m in my 50’s . I slowly weaned myself off over a 5 week period and all the side effects are gone . My vision is back no white cane anymore , no more eye spasms , migraines barely there and no light sensitivity . And no seizures . Told the neurologist who proceeded to tell me it was all in my head . This same neurologist hasn’t seen me in person in 6 years . I don’t think they should be handing out meds that they do r know or won’t believe us about side effects .

@santosha
Glad Keppra’s working for you! When it was clear Lacosamide was not working for me, I asked to be put back on Keppra. My neuro hesitated because it made me “moody” and suggested Briviact. It does concern me a bit that Briviact is only made in Switzerland, and there is no generic. Keppra is much more widely available and generic. Thank you for the info link!