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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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@louissc
Hi Louis!
My doctor only speaks Taiwanese (which I understand is the same as Hokkien), having learned from his parents, who immigrated from Taiwan to Brazil. He was actually born here in Brazil! Even without speaking Mandarin, he'd had no difficulty communicating in Taiwan when he visited last year.
I'm so sorry to learn that CBD medication's still illegal in Singapore. But this might change, as it's a pretty new drug that's been approved by the FDA for epilepsy and other neurological conditions.
I understand TCM (Traditional Chinese Medicine) is legal in Singapore. How well established is it there?
Chris
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1 Reaction@earlylonghauler I also took deplakote, loss of hair, eyesight issues, weight gain. Not worth it back to dilanton, controls siezures but miss a dose and have a seizure. So my dr put me on briviact , I have that constant itch inside my ear, the constant ringing ( it never stops) my short term memory is horrible, weight gain, eyesore issues back again. I don’t know what the chemical that makes this drug a schedule one, but I’m dropping it .
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2 Reactions@adoptivemother how old is your daughter?
@nitsuait 24. Onset of epilepsy at 19.
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1 Reaction@nitsuait
Briviact is a schedule 5 drug which is the least addictive of scheduled drugs. Schedule one drugs have no medical use.
Did you have a rash that went along with the itching. Briviact has fewer behavioral side effects than Keppra but if they do occur vitamin B-6 is helpful in some people. Do you plan to switch to Keppra.
Jake
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1 ReactionHi everyone,
Today (16 May) is my 1st day on 50mg Briviact both day and night. For the past week since last Sat (9May) I was on 1 doze of 50mg at night.
During the last week, nothing major happened.
The only major incident was the seizure yesterday evening while brushing in the bathroom. However, it’s a brief one according to my caregiver (≈15sec of lying on floor), still conscious. To get back on my feet took a bit longer (maybe a minute longer) than my previously almost daily seizure. During those, I could recover almost immediately.
Am I happy with the progress? Yes. The seizure yesterday might be due to my late lunch (7.5 hours after breakfast). Today, I’m fine after the increased dosage. Except for a bit more itching felt at both upper arms past few days, I’m all good.
Cheers,
Louis
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4 ReactionsWelcome to the Epilepsy & Seizures Group on Connect — so glad you found your way here, even if the path that brought you has been a tough one, as it has been for many of us, myself included.
I'm truly sorry to hear about everything you've been through with Depakote and, more recently, Briviact. I understand you well, as my own first two to three years of epilepsy treatment were a real struggle with the different AEDs I was prescribed. Looking back, part of the problem was that I was being treated first by a psychiatrist, and later by neurologists without specialization in epilepsy, who applied standard dosages to my type of epilepsy — temporal lobe with mesial sclerosis — that brought me more harm than benefit. Everything changed when I finally switched to a neurologist with deep expertise in epilepsy.
My current doctor often reminds me that every patient is unique, even two people with the same type of epilepsy can respond very differently to the same medication. Finding the right AED at the right dosage can take time and patience, as my own journey has shown me.
I've been on Keppra since December 2024, a medication I was very resistant to starting, given all the negative things I'd read about it. The first few months were indeed tough, but my doctor gradually adjusted the dosage to one I could tolerate well. It's now bringing me far more benefits than harm and has kept me seizure-free for the longest stretch I've ever experienced.
How long have you been on Briviact? Have you had the chance to speak with your doctor about the side effects you're experiencing, so that adjustments can be explored? And would you mind sharing what type of epilepsy you have? It'd really help us support you better.
The journey to finding the right AED and dosage can be long and demanding — physically and emotionally — but please don't give up.
Wishing you a brighter treatment journey ahead!
Chris
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2 Reactions@louissc
Hi Louis!
I'm sorry to hear you had a seizure, even a mild one. But it's truly wonderful that you're not feeling discouraged and you're still celebrating the good results you're having on Briviact. That's a great attitude to have!
About two weeks ago, I'd had a mild seizure myself, most likely due to antibiotics I'd been taking combined with poor sleep from pain. Knowing it was tied to a specific situation, I didn't let it discourage or demotivate me. I'm happy to say I'm past it now and seizure-free again.
Your late lunch could definitely have been a trigger. That's happened to me too in the past, which is why I always try my best to stick to regular meal times. And when that's not possible, I make sure to eat something in between.
Out of curiosity, have you been keeping a daily diary? Jotting down how you're feeling every day, even on days when all's well and there are no symptoms or seizures, can be incredibly helpful — especially when starting a new AED. That's actually how I came to understand my own seizure triggers much better.
Have a nice weekend!
Chris
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2 Reactions@santosha
Hi Chris,
Yes I do keep a diary with my caregiver noting down the time and length of seizure. I realized excessively salty food can be a trigger, thus I stuck to naturally sweet steamed fish when possible.
It is also important to have regular meal hours like you said. Irregular ones can be a trigger. I’m glad you are as ever so optimistic and refused to let any situation discourage you! I sincerely hope all will go well for you. Meanwhile have a good weekend!
Cheers,
Louis
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4 Reactions@louissc
Thank you Louis!
As I've learned through the Andrews-Reiter approach, the notes in my daily diary go well beyond just seizures — they also cover sleep quality, food, activities, stress & anxiety levels, weather, and more.
This approach has helped me greatly in understanding my triggers and recognizing my limits, which in turn has given me better seizure control. What I find particularly inspiring is that Dr. Andrews herself has epilepsy and has been seizure-free for decades through this approach.
For anyone interested in learning more, here's their website: https://www.andrewsreiter.com/
Chris
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