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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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@santosha
Hi Chris,
Thank you for your sharing on this one! I’ll check it out.
I read from a local forum there’s one without a seizure for years till one struck again. That must be truly depressing. As for myself, I’m already into my mid 40s. Even if one struck me years later were Briviact going to work for me? That may be the last seizure I’m gonna have in this life so screw it.
Cheers,
Louis
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2 Reactions@jakedduck1 I take b-6, I did get my schedule wrong, but the question still needs to be answered , why? No I can’t stand keppra. Loki g for a trial. Or maybe I’ll just quit I’m tired of the depression, it’s earned alive.
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2 Reactions@louissc yea im 65, I’ve had seizures since I was 17, that I’m not dead is amazing, but I can’t deal with the cost , the supply chain. Or this new depression. I just started the generic, I’m wondering if that has more extreme effects.
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2 Reactions@nitsuait
Hi,
Yes! I just knew about the generic and everyone is so excited including me! I really hope it'll bring the price down for the sake of everyone.
Cheers,
Louis
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2 ReactionsHello @nitsuait ,
Well, at least 2 of us have had ear issues with Briviact. It comes and goes, and I've learned to live with it. Missing a dose of any E-med could cause a seizure, so best to be on time with am/pm pills. If a med works for you stick with it. If Epilepsy is not controlled memory issues may be more common.
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4 Reactions@louissc
When you get your medicine refilled, get the same manufacturer.
Stanford University did a study that showed increased breakthrough seizures in people who switched generic manufacturers.
Best of luck,
Jake
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3 Reactions@louissc
Hi Louis!
Indeed, having a seizure after many years of seizure freedom can be really hard to face. That said, sometimes a seizure is tied to a very specific circumstance rather than a sign of a new pattern emerging. I experienced this myself — following a medication brand change, I had two months of seizure freedom and then had a mild complex partial seizure. Because I knew it was triggered by a terrible night of sleep due to pain, it didn't shake me emotionally. Context matters.
One thing that has truly helped me is something I've carried from yoga into everyday life: trying to live more in the present moment rather than in an imagined future. My yoga teacher once said something that has stayed with me — we fill our minds with worries about tomorrow, yet we don't even know if we'll be here to face them. A sobering thought, but also a liberating one.
This shift in perspective made me realize how much mental energy I was spending on "what if" thoughts. Learning to notice that pattern and gently return to the present has changed how I relate to uncertainty.
It doesn't mean ignoring real concerns. It means not letting possible future seizures rob you of the peace you have right now.
Chris
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3 ReactionsGood Morning @nitsuait
This message was meant for you and now I see I forgot to mention your name. Sorry!
Chris
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@jakedduck1
Hi Jake,
I read that for drugs, the human body absorb one in different manner. Thus, a generic one may actually act better than brand name ones. Once the patent expires, there will be so many generic ones out there.
The numerous negative reviews of more generic ones will attract lesser negative attention than those of the more positive reviews of the brand name version. Let's give those generics a chance.
Cheers,
Louis
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1 Reaction@santosha
Hi Chris,
You know, after leaving enough for my family and clearing for my mortgage, what did I tell my mom what am I going to do with what she left me? First, I may leave the world without her. Not sobering, but it's the truth. If I am still to be alive, i am going to blow it. Life's too short to care about it. Had you ever watched "The Last Holiday"? It's a funny American movie I think played by Queen Latifah.
Yup the occurence of a seizure is a complex matter. Quality of life will be affected for sure, that's why I am going to blow what I have all. After living life without a seizure and having one after so many years? I am not gonna have that many so "many years" ahead to live. Thus, I think I posted in another post, screw it. Screw life. I am also going to blow what I have. I had enough of my seizures.
So, yeah.
Cheers,
Louis
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