Any Briviact experiences to share?

Posted by Lisa @mamaofiii, Sep 8, 2020

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.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for cathy5161 @cathy5161

@santosha Thank you for your thoughts and shared experience. Much appreciated!

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My pleasure @cathy5161 🌻!
Chris

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Profile picture for cathy5161 @cathy5161

And with respect to Briviact, I am up to 75 mg 2 x day (plus 5 mg Onfi). Stopped all Xcopri. One always has hope for improvement, and this was a major change for me to leave my long-term epilepsy provider/hospital for something and someone brand new. Very disappointing, however, that I am now having a lot more seizures since the 4/26/26 increase (from 50 mg 2x day) to 75 mg twice/day. In May I had 10 seizures (plus one on 6/1). That compares to 2 in April. I'm actually back where I started 5 years ago with prior provider -- looking at viability and safety of RNS or actual resection. No SEEG this time, but other types of pre-surgical testing would be necessary. Sigh....

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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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Profile picture for cathy5161 @cathy5161

And with respect to Briviact, I am up to 75 mg 2 x day (plus 5 mg Onfi). Stopped all Xcopri. One always has hope for improvement, and this was a major change for me to leave my long-term epilepsy provider/hospital for something and someone brand new. Very disappointing, however, that I am now having a lot more seizures since the 4/26/26 increase (from 50 mg 2x day) to 75 mg twice/day. In May I had 10 seizures (plus one on 6/1). That compares to 2 in April. I'm actually back where I started 5 years ago with prior provider -- looking at viability and safety of RNS or actual resection. No SEEG this time, but other types of pre-surgical testing would be necessary. Sigh....

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@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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Profile picture for Chris Gautier, Volunteer Mentor @santosha

@louissc
Hi Louis!
I'm not a doctor, but multifocal seems to refer more to the type of seizures you experience — seizures that arise from more than one location in the brain — than to your epilepsy syndrome as a whole. If you can still communicate through your fingers during a seizure, your consciousness seems to be preserved, which in my case only happens during my auras.
If I remember correctly, you have an appointment with your specialist soon. It might be worth asking him or her about your epilepsy syndrome specifically, and whether it's possible in your case to experience auras. The Epilepsy Foundation has a helpful overview of epilepsy syndromes that might be useful to read before your appointment:
Epilepsy Syndromes
https://www.epilepsy.com/what-is-epilepsy/syndromes
I know how frustrating it can feel to continue having seizures with a new treatment. But let's look at the positive side — the glass half full: your current seizures are much milder than your previous ones and allow a much faster recovery, without disrupting your routine the way the tonic-clonic seizures did. Did I get that right?
And as I've experienced myself, the beginning of a treatment often requires gradual medication adjustments, demanding much of our resilience and patience.
You mentioned your hair is thinning — this can indeed be a side effect of the medications you take. My hair also got thinner with some AEDs. It's worth mentioning to your specialist. I use a very specific shampoo that's been helpful for that.
I'm also very glad to hear that reducing your screen time and following other recommendations from the link I shared have been helpful. Medication helps, but there must also be effort and commitment on our part. As you've wisely noted, there are many other options besides medications that can help us navigate our epilepsy journeys. As for the specific lenses, I'd recommend getting guidance from your specialist, as screen-related triggers aren't something I have personal experience with. Tell me more about how the reduced screen time has helped you!
Let's keep in touch! I'm looking forward to hearing from you after your appointment with your specialist. 🌻
Chris

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@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

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