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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
Are you having Focal or Generalized seizures?
Jake
@jakedduck1
Hi Jake,
It is multifocal.
Cheers,
Louis
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2 Reactions@louissc
Oh yes, now I remember.
Have your doctors mentioned neuromodulation like RNS or adding additional medication?
Do they have any comprehensive epilepsy centers near where you live? Have you had a video eeg?
Best of luck,
Jake
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2 Reactions@jakedduck1
Hi Jake,
I’m afraid I had no discussion any discussion with the current neurologist regarding RNS, although I did know any form of surgery option is off the table. I’ll discuss that with him during my consultation with him next week, and also if I finally decided to take the plunge and seek NTUH in Taiwan. I know it won’t take up space in the brain after looking at pictures of that procedure, and seems like a plausible option. That’s what I love about this forum! We are all here to help each other where we can! I had done a EEG but an awake one lasting 2 hours besides the usual MRI. Nothing to show. Sigh. But still, always that need to keep fingers crossed. May things turn out better for you too. Meanwhile, I am afraid I had nothing new to contribute exactly consuming Briviact which unfortunately didn’t help as it seemed to be in the beginning and ever so promising..
Cheers,
Louis
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2 ReactionsGood morning @cathy5161
This past weekend, I was reviewing some notes from past sessions with my neuropsychologist, and your recent post and words came right back to me. So much of what she has shared over the years with me echoes beautifully with what you wrote here. Sharing some parts she has once told me.
We always have a choice: to remain anchored in resentment and loss, or to open ourselves to new joys. When we resist acceptance and cling to what is gone, we risk becoming trapped in pain and in the past.
Every time a door closes, the temptation is to stand before it — grieving, waiting, refusing to turn away. But healing asks us to gently shift our gaze: to look around, to look forward, and to notice the window that is quietly opening. We need to stop looking at the closed door to start seeing the new light coming through the window that has opened.
Have a lovely week!
Chris
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5 ReactionsI was diagnosed in 1975, epilepsy didn’t seem to exist. We didn’t have computer groups. I really had to learn on my own. It’s really a bad choice. I was a wild teenager drinking smoking, drugs. Tegretal was like a sledgehammer, so I wouldn’t take my meds. I ate a lot of floor before I found my way out. I mean years of seizures. I would love to give advice for people in the same game of stupidity. I mean I am lucky to be alive.
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4 Reactions@santosha Thank you for your thoughts and shared experience. Much appreciated!
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2 Reactions@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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3 ReactionsAnd 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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3 ReactionsHi @nitsuait
What you went through was incredibly hard — being diagnosed in 1975, when epilepsy was so poorly understood, with little community support and none of the wide variety of medications and treatments we have today. You had to learn most of it on your own. It's no wonder you struggled a lot. And yet here you are — having found your way through all of it. That alone speaks volumes about your strength and resilience.
The fact that you can now look back and say "I would love to give advice to people in the same situation" tells me so much about who you are today. That hard-won wisdom — the kind that only comes from having truly lived through something — is exactly what this community needs and values.
I'd love to hear more about how you found your way out. What helped you turn things around? Your story could mean the world to someone who is struggling right now and feels just as alone as you once did.
And how are you doing today — have you been able to speak to your doctor about the Briviact?
Chris
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