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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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My pleasure @cathy5161 🌻!
Chris
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@cathy5161
Hi Cathy,
I'm so sorry to read this. What a difficult stretch you're navigating right now.
Making the decision to leave a long-term provider takes real courage. But as we say in Brazil, "quem não arrisca, não petisca" — nothing ventured, nothing gained.
You once mentioned having tried every epilepsy medication out there. Has your new doctor considered Epidiolex or pure CBD oil? Like you, I have refractory temporal lobe epilepsy, and adding CBD alongside an AED has been the best treatment out of everything I'd tried before. It may not be the answer for everyone, but it might be worth a talk with your doctor.
I'm also tagging Kerry @keeg1010, whose son had very difficult-to-control seizures and found success with Epidiolex combined with an AED. Her experience might also offer you some insights.
Sending you much strength. You're not alone in this!
Chris
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3 Reactions@cathy5161
Don’t go sigh. I always thought finding any right combi of things one doesn’t to lessen seizures or lower the intensity/frequency is like hitting a jackpot. Will it happen within our lifetime? We don’t know. But let’s not stop trying when we still can.
“Today is only one day in all the days that will ever be. But what will happen in all the other days that will ever come can depend on what you do today.” - Hemingway
Don’t give up hope just yet. At least during your final breath, you can still tell yourself you did try.
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3 Reactions@santosha
Thank you! I’ll keep all in touch after my discussion with the local specialist I had been seeing next week. He knew about my auras issue. And they still impact my quality of life because of the frequency issue. I’ll also let you know if reducing screen time works!
I finally also had that thought to live life for myself. Step back from the usual a little. Not sure if that will help. For too long, even after having this condition, I realized I was too obsessed about work. I had been neglecting my closed ones who are also battling this with me. I didn’t consider what my mum always told me - “if you still don’t have the money to spend, tell me because when I’m gone ultimately my asset goes to you”. I think my dad feels the same way.
Of course as a son I won’t want to go beg my parents for money. But actually, my role as a son is to spend whatever they will leave me in a meaningful way and let them witness the results while they are still alive. And that’s not something I had done. I knew my wife always wanted another kid and perhaps my parents wanted another grandkid to have fun with. My wife and I are a bit old for another kid now. But because of monetary concerns which I had over this issue, I never gave all those things much thought when I should have. Use their money. It’s not shameful, when I won’t spend it in ways which are meaningless. After all, it’s continuing a family’s legacy and for my parents, also let them have more fun in their final years by me using whatever money they have given me. Don’t make the same mistake I made if you’re still young enough.
Cheers,
Louis
@louissc
Hi Louis,
What you've shared shows real self-awareness — and that in itself is already a big step forward!
Your mum's words say it all, don't they? Parents don't just want to leave things behind; they want to see you live well while they're still here. That's the real gift. And it sounds like you've finally heard her. ❤️
I somehow recognize myself in what you're describing, Louis. When my diagnosis finally forced me to step back from my work — a very important part of my life — it wasn't easy at all. I felt like I was losing part of myself — my value, my purpose, my independence — and I had to rework my whole sense of who I was and what I was for. That kind of internal shift doesn't happen on its own.
You asked me earlier how neuropsychological support has helped me. What you're sharing today answers that question better than I could. My neuropsychologist helped me rebuild my sense of value after stepping back from work, untangle the loss of financial independence, and find a healthier relationship with myself, among other things. That inner journey you're on, Louis — questioning, reflecting, wanting to live differently — is real and important work. And it's the kind that's much easier with the right support alongside you. I've mentioned it before, and I'll mention it again: finding that support could make a real difference.
I'm glad you're seeing your specialist next week and I'm curious to hear what comes out of that conversation. And do let me know how the screen time reduction goes — small changes sometimes surprise us.
Fingers crossed for you!
Chris
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4 ReactionsHi everyone! After a month of this medication (initial dose of 50mg at night for 1 week before increasing to another 50mg in morning), I’m starting to develop slight fever of over 100.5°F which only goes away after consuming paracetamol for the past 3 days and despite drinking 2L of water per day. And unusual fatigue for the past 3 days (fell asleep without knowing while on bed). Anyone here had similar delayed side effects after consuming Briviact, if any? I had an apparent seizure without me being aware of yesterday.
Cheers,
Louis
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1 Reaction@louissc
Hi Louis,
I checked Briviact's leaflet and fatigue and fever are listed as possible side effects of this AED. I can relate: I had quite a bit of fatigue starting Keppra, and some light fever on Vimpat. It does take time for the body to adjust to a new medication and its dosage.
Please report all of this to your doctor, including the seizures you mentioned. You have an appointment this week, right?
Take care!
Chris
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1 Reaction@santosha
Hi Chris,
Thank you so much and I appreciate it. I have an appointment on Thursday. Let's see how it goes. I am just not so sure the side effect, if any, will appear this late into the consuming of one medication. I was off Keppra as the neurologist thought, and I also believed, it seemed it do nothing much for me. Cutting it off also didn't make things worse.
Cheers,
Louis