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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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@jakedduck1
Hi Jake,
I understand your apprehension regarding switching drugs. So will I, to be honest. Once I found one which worked for me, I would and will continue to use it. I also had experiences with generics which, shall I say, weren’t very pleasant.
Yet, I’m glad finally there’s the availability of the generic version of Briviact soon due to 1 simple reason - cost. For many, it’s either consuming this or nothing at all for long term. There will be many here who will either have to spend money on other drugs and/or commitments in life. Do I need to go take the gamble? Yes, because I need to.
I am so glad for others who do not have this concern. I sincerely hope you will continue to be well, because for too many years I hadn’t and I do understand the feelings of others who feel the same. Take care, Jake.
Cheers,
Louis
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3 Reactions@nitsuait
Hi,
I heard ginko nuts is supposed to help with memory but only buy what you find in pharmacies. Lou Certain vitamins as well (B6 and probably more) supposedly helps and I’m also taking them. It doesn’t stop seizures. All of the supplements just aid cognitive functions and make brain degeneration happen at a slower rate. They won’t stop brain degeneration. Everyone will have degeneration for sure. My almost 80 year old dad now has dementia. Oh and mushrooms. There are just so many to try I don’t know where to start. I hope you will feel better.
Cheers,
Louis
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3 Reactions@earlylonghauler and others re Briviac side effects.
Hi - my name is Cathy and have not been on this site for quite a while. Have been on just about every epilepsy med out there for refractory left temporal lobe autoimmune epilepsy. GAD65 Encephalitis is in the mix. Wasted 2 years trying many different meds and infusions to address the GAD65 Encephalitis and brain swelling...from long-term steroids, to Cellcept, to infusions, to Actemra injections. Nothing worked and all had side effects. So attention now turned back to my epilepsy. Have been on Onfi and Xcopri for years. Not a good mix because how they react with each other. Switched from NYU to Columbia and recently had a 8 day EEG at Columbia. Bottom line is I started Briviact, weaned off Xcopri and am on tiny amount of Onfi. Currently up to 75 mg Briviac two times a day and 5 mg Onfi. Drug interactions and side effects are complex and hard to pull apart what is doing what. And side effects are different for each one of us. My main issues now, besides ongoing seizures, appear to center around mood and depression. After a botched SEEG several years ago, symptoms of Abulia emerged. That has gotten worse and worse to the point that apathy, lack of motivation, and inability to initiate action cripples my life. Tried Amantadine and a few others . No help. Seeing a new specialist who is dually licensed in both Epilepsy and neurological psychiatry. Considered a trial of Concerta, but she wanted to trial Viibryd first. Recently started Viibryd and just increased doseage to 20 mg. Do I see a difference? Frankly, no but its too early to tell. Briviac also too new to see its impact on continuing seizures. Guess I'm trying to say that it's imperative to keep seeking and fighting, realize it's tiny bits of progress we seek, not perfection, and find and build a team of the best neurologists and specialists you can. Yes, it can be brutal, exhausting and never-ending. Yes, it's possible there's no answer out there for some of us with very complex cases. But I refuse to stop trying, and I do my best to cultivate a positive attitude and the gratitude for what I do have. Not easy or constant, but imperative for me. My heart is with all of you.
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5 Reactions@cathy5161
Hi Cathy,
Nice to see you back on Connect, sharing your experiences with us!
I recently came across a podcast I truly enjoyed and wanted to pass it along:
Understanding Epilepsy Through Story: A Conversation with Katherine Center
Mayo Clinic
One saying from this podcast stayed with me after listening: "Acknowledge the hardship, but savor the joy as much as we can."
Chris
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4 ReactionsHi everyone,
After a week without seizure, it’s unfortunate that I had encountered seizures again on Saturday afternoon (once) and also twice Sunday afternoon (2 hours apart). I guessed there’s a honeymoon period to every drug. This past week is also the week when I included 50mg in the morning but decreased my dosage of topamax to 50mg in morning (75mg previously) so maybe it’s the body adjusting. I must also admit this last Saturday & Sunday were also when I had a late lunch this past work week was a busier one. Will update again how things go again.
Cheers,
Louis
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3 Reactions@cathy5161 that is a hard road. Once we get our experimental mushroom test up and about , we will make sure the world knows
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1 Reaction@santosha Thanks so much for sharing, Chris! Every day I try to cultivate hope, acceptance, and gratitude, while still acknowledging the terrible hardship and suffering ... but without staring at it or mourning my past self, and avoiding obsessive, time consuming and generally fruitless research and answers into something not at all well-understood. I get derailed very quickly, so for me its a day by day effort.♥️
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2 Reactions@louissc - sorry to hear about the seizures you had this weekend, especially after a week without a seizure.
Do you feel your schedule, like for food, or the busyness of your work, impacts your potential for seizures?
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2 Reactions@lisalucier
Hi Lisa! Thank yoou for the concern. The trigger may be my more than usual time in front of the computer screen and slightly busier week all ellse being more or less the same. The seizure is more mild but still lasting 20sec or so (after factoring all the recovering time) than before Briviact. My caregiver didn't notice I had seizures sometimes. I am not losing hope just yet as it seems like the drug does work, but external factors which can be reasonably controlled are triggering seizures.
Let's see.
Cheers,
Louis
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3 Reactions@louissc
Hi Louis,
I'm happy to hear you have not lost hope because of these seizures you had this past weekend. As you have well noted, this might be due to the changes made by your doctor in your medications.
As you mentioned, your caregiver did not notice some of the seizures. I'm wondering if these were just focal seizures.
Have you reported these seizures to your doctor? And how has your week started - did the seizures stop?
Chris
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