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Any Briviact experiences to share?
I was the last car in a 4 car collision in 2001. I had to have neck fusion and had horrible, unbearable headaches. I went to pain management, learned how to do biofeedback. I tried everything. Finally my pain management doctor recommended I take Trileptal and it was amazing. The doctor said it had been around for years and was known to help with migraines. My headaches finally became bearable. I was the type that would never even take Tylenol unless it was a have-to situation. Unfortunately, I don't remember him ever telling me this was an anti-seizure medication. I had only had 1 seizure in my life and it was a febrile when I was 3 and had pneumonia.
Around 3 years later my memory became terrible. We had taken a family trip and as soon as we got home, that trip was the first memory I lost. I had read where Trielptal could cause memory loss, so I just quit taking it. I was becoming desperate. Before I could get into a doctor to find out what was going on, I woke up one night a few months later to my husband and daughter standing over the bed, looking at me with fear, my husband had blood on his t-shirt. I had a huge grand-mal seizure and bitten my tongue. Meanwhile, my memory grew worse and worse. To be truthful the next several years were a blur. About 8 years into this mess, my memory was so horrible, I would forget what we were watching when the TV show went to a commercial. I went to many doctors and all they could come up with was that the seizure may have been from the concussion from that wreck and a swimming accident when I was a child. As far as the memory, no one had any answers. This all started when I was 39.
I finally got into Mayo and spent several days. They said I was probably starting early-onset dementia. What a horrible thing to hear. They said my short-term memory was probably gone and when it gets messed up there's no coming back. They showed me where I had a thin "layer of something" between a couple of places in my brain and that's usually where Alzheimer starts with dementia first. They really didn't have anything else to tell me except that I should have never cold-turkey Trileptal. You shouldn't ever do that with an anti-seizure medication. I was never told this.
Several years past and praise the Lord, my memory finally started coming back. There's no doubt in my mind that it was God's healing, because Mayo told me once you lose it, it's gone. I would still on occasion have a nocturnal seizures if I was going thru a lot of stress. Then one day I was in our grocery store looking at meat. I felt that horrible aura and started praying that it wouldn't go any further. Then I came around on a stretcher in an ambulance. I've had a few in random seizures like that, usually when stress is about to get the best of me, but I always had the aura. Last year out of nowhere I began having strange episodes. I'm not sure what they were. I wasn't doing involuntary jerking but it was like my brain wasn't there. The worst was when we were having our dishwasher repaired. I was getting dinner ready with the repairman in the same room. I felt an aura and then remember having to go to the bathroom. Then the man was gone and I was in different clothing, our kitchen floor was wet where I was standing. I believe I had urinated on myself.
My neurologist said that probably what was happening was my body was becoming immune to Trileptal. She started me on Briviact. There's not alot of information out there about people taking it. She started me on 25 mg twice a day and wanted me to increase it to 50 mg two weeks into taking it. This pill made my nerves so bad. I developed a temper. I never increased to 50 mg. My seizures and strange episodes did go away for about 6 months. Unfortunately a horrible family situation came into the mix. I have had about 4 episodes since June. Again, they weren't like the normal grand mal seizures or any type I've had over the past 15 years. These are too hard and weird to describe. They didn't leave me a zombie like the big ones do. The last one I was fixing my husband and I's anniversary dinner. I became so confused I tried to cook the steak in a saucepan. He liked to never have gotten me to let him take over. I have really been battling depression like never before too. I've always been the type that could find something good out of anything, but I really seem to be struggling. I know 2020 has been a mess of a year for everyone and like I said family struggles have made everything so much worse.
I'm curious if anyone else out there is taking this and what their experiences are.
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@mamaofiii Lisa, it is helpful to get an overview of your experience with seizures. I'm tagging fellow members @cindypekarek and @crstyday40, who have mentioned that they take or have taken BRIVIACT® (brivaracetam). @dawn_giacabazi and @jakedduck1 may also have something to add to this discussion.
Lisa, how long have you been on Briviact? What things do you do for yourself to help manage stress?
I started Briviact November or December last year. For stress management I have always received peace, strength and joy from listening to Southern Gospel Music. As soon as I can daily, I turn on Pandora and it plays nonstop :D. My faith has always been where I receive my strength. I love crocheting too. When the stress came from all my health problems, it was one thing. But now both our mothers have died and we're having to care for our dads quite a bit more. They both still live on their own, but it's pretty hard. It looks like my father-in-law is about to need to move in with either my sister-in-law or us. My mother-in-law never liked me and always made that clear. She actually said I didn't know what problems were and I just wanted attention, even after breaking my back. So I still struggle with all the stress she caused and it's very hard to imagine taking my father-in-law in. My husband has a pacemaker/defibrillator and his health has been declining with all the responsibilities we're experiencing. Add to that one of our children divorced after his 2nd child was born like 6 months later. He's made some decisions that were made too soon and that's what is probably the hardest for me. He has pretty much shut me out of his life. He is actually acting just like my mother-in-law with things he says and the way he's treating me. My kids were my world. I was a homemaker and my husband and I gave up everything so I could stay home. Like everyone life is stressful. It's just that sometimes life seems harder than other times. I guess that's where I'm at right now along with adjusting to a new seizure pill.
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1 ReactionPlease 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!
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2 ReactionsI 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.
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5 Reactions@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.
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8 ReactionsI 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)
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6 ReactionsHi, @earlylonghauler - wondering how it's going with the
brivaracetam (Brivact) and the side effects you were experiencing?
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1 ReactionMetal 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.
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2 ReactionsI 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 .
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3 Reactions@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
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