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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,
I had another seizure yesterday at 4.45pm. But it might be too long in front of the ipad screen settling work stuff. Again, it’s barely noticeable. Yeah it might be focal. I may simply need to take a break more often, laugh a bit more and then all will be well!
In the meantime, I’ll continue to monitor. This seems to be the better drug to deal with my seizures.
Cheers,
Louis
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5 Reactions@louissc - really sorry to hear this about another seizure.
Has your doctor weighed in at all related to your recent seizures? If so, what did they say?
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2 Reactions@louissc
Hi Louis,
I'm sorry to hear you had another seizure yesterday, which again seemed to be a focal seizure. Thankfully, the new medication appears to be working better, and it's wonderful to see you in such a positive mindset!
Your instinct about prolonged iPad use is worth taking seriously and discussing with your doctor. I'm sharing here two documents that might be helpful:
Can Too Much Screen Time Cause Seizures? - My Epilepsy Team
https://www.myepilepsyteam.com/resources/can-too-much-screen-time-cause-seizures
Photosensitivity and Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/photosensitivity
Have you ever noted screen time as a recurring pattern in your seizure diary? And have you experienced this kind of focal seizure before this new treatment?
Wishing you many restful breaks and lots of laughter!
Chris
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2 ReactionsMy pleasure @cathy5161 💜
It's so wonderful to see you in such a positive spirit! Your words and that podcast seem to echo each other beautifully! 🤗
Chris
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4 Reactions@lisalucier
Hi,
My appointment with my specialist is next week and the diagnosis seems to be multifocal in nature. That’s his reasoning for the impossibility of surgery and I can only go the taking of drugs route but it also proved to be refractory.
Thus, I did secretly wish maybe life will be better to be cut short if I had to bear with all these (not with suicide but of course, just natural death). Let’s see what Briviact can do and I’m still keeping fingers crossed.
Cheers,
Louis
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2 Reactions@santosha
Hi Chris!
Thank you so much for the links! I’m sure screen time does play a part but I don’t know how much. I do not have a diary for screen time at the moment. Maybe I should keep one too😄 This seizure is slightly different in a sense it’s milder but still out of the blue. And people may barely notice unless I collapse while standing. I seriously dunno what to make of it. It’s less serious for sure though.
Cheers,
Louis
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1 Reaction@louissc
Hi Louis,
It's great that you've already identified one of your triggers — that's an important step!
I'd suggest expanding your diary beyond screen time to include sleep, stress levels, meal details, and any other relevant factors. As I've mentioned before, this kind of tracking has helped me enormously in identifying and monitoring my own triggers, and ultimately in reducing my seizures. It's well worth the effort!
Regarding the links I shared earlier, they include some practical tips for managing prolonged computer monitor exposure. Do take a look and see which ones work for you.
On a positive note: focal seizures are significantly milder than tonic-clonic ones and carry much lower risk. The fact that you're experiencing these instead of your typical collapse seizures is, in my view, a real sign of progress in your treatment. That deserves to be celebrated!
I'd love to hear more about these episodes. Is your consciousness preserved or affected during them? Do you notice any accompanying symptoms — nausea, unusual smells, tastes, or visions, or perhaps a tendency to stare blankly?
I'm sharing two links below with detailed descriptions of focal seizure types that may help you better identify what you're experiencing, and also prepare for your upcoming medical appointment:
Focal Preserved Consciousness Seizures (Simple Partial Seizures)
Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-preserved-consciousness-seizures
Focal Impaired Consciousness Seizures (Complex Partial Seizures)
Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-impaired-consciousness-seizures
Have a lovely evening — it's just the start of the day here! 😊
Chris
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1 Reaction@louissc
Hi Louis again!
I share two discussions from our group that I think you'd find interesting and where your own experience would be a valuable contribution!
Tiredness triggering an atonic seizure vs sudden falling asleep
https://connect.mayoclinic.org/discussion/tiredness-triggering-an-atonic-seizure-vs-sudden-falling-asleep/
Which Seizure Trigger Is Your Hardest Battle?
https://connect.mayoclinic.org/discussion/which-seizure-trigger-is-your-hardest-battle/
Have a look and feel free to jump in. The more perspectives shared, the richer the conversation for everyone!
Chris
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1 Reaction@santosha
Hi Chris,
It's the end of a work week here!
The official diagnosis is the epilepsy being multifocal, and my current neurologist was certain about that. I must admit emotion, stress levels do play a MAJOR part when seizures can be triggered. However, when viewing the screen is for leisure purposes, for e.g. just sharing experiences on this platform or sudoku, everything's ok. Comfort food like KFC could comfort me sometimes but of course the limit must be there, together with other stuff which all doctors will shake their heads and say no. I don't collaspse out of the blue now, but sudden seizures can still occur. I could still feel the "aura" and experience that deja vu, but it's surely much shorter now. However, with Briviact, the intensity of it decreased till barely noticeable if I am to be sitting down but of course not if I'm standing.
I won't have the more extreme and disturbing side effects of AEMs like nausea etc. Memory sure dropped, anniversaries forgotten, and being tired much easier now (although I am not sure whether that's to work or Briviact). Having thinning hair and more white ones I am not sure is a side effect of any side effect? I would still be conscious (even before Briviact), just that I couldn't speak for appprox 20sec (after factoring in those recovering time). However, with my fingers I would tell people around all's good so no worries. I am not sure if my "multifocal" seizure can be turned to become a "focal" one. Taking life easy like the French, will it help? Psychologically one with epilepsy will surely be affected.
I guess learning how to live life for yourself helps, and not let the negatives overtake the positives. As for the links you kindly shared, I will go check them up over the weekends. Oh I forgot to mention previously. Having Briviact somehow made me smile for no reason. Is that a side effect?
Have a good weekend ahead after work.
Cheers,
Louis
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2 Reactions@santosha
Hi Chris,
First I must say I doubt I suffered any knock seizure, but I did fall asleep while watching podcasts or listening to music videos on iPads. I would be in the same position before and after being woken up by wife to sleep properly, both under same positions.
I must admit too much stress at work could be triggers, especially when I argued expressing different opinions and also of course too much screen time dealing with work related stuff. When I finally relaxed, there could be this seizure happening. Before Briviact, I must say I was seizure free for 5 days. Now? Not so. It’s back to those most daily mild out of the blue seizures. But of course, I can’t speak for the future.
Some reducing screen times and other recommendations in the link had helped. And I wondered whether getting newer lenses for my specs will do the same. Some many options out there besides drugs! I don’t know what to do now to be honest. But maybe that’s a good thing.
Cheers,
Louis
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4 Reactions