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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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@santosha123
ABSOLUTELY CHRIS
"It means not letting possible future seizures rob you of the peace you have right now.
Very well said!
Thank you,
Jake
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4 Reactions@louissc
You can chance switching generics but I will not be a test subject for whether or not a genetic works. I've had over 13,000 tonic clonic seizutes not to mention focal aware, impaired, absences, and the constant status seizures. I will be sticking to brand named drugs which have proven effective for me.
What may seem like insignificant differences in how quickly these different ingredients break down and get absorbed in some patients or whom may be be allergic or sensitive to the inert ingredients can cause a critical fluctuation in blood levels, triggering breakthrough seizures. I'm not saying this just to hear my head rattle. If brand and generics are "identical" as some doctors and pharmacists claim why did my Dilantin level drop from 14 to 7 when I was in the hospital being given generic Dilantin. "Identical? I think there are doctors and pharmacists who need to look up its definition.
There is substantial, documented evidence that switching between brand-name and generic antiseizure medications—as well as between different generic manufacturers— can cause breakthrough seizures in some patients.
I choose to limit my risk as much as possible. Admittedly I haven't always made the best choices in my epilepsy journey but I WILL NOT mess with my drugs. If it's not broken, why fix it. My brother chose to take whatever Tegretol manufacturer he was given and continued to have seizures. Since I pick-up and deliver his meds I asked his pharmacy to always refill his meds with the same manufacturer. He hasn't had a seizure since.
Take care Louis & all,
Jake
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3 Reactions@nitsuait I take b-6 as well, does it help? Maybe
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1 Reaction@jakedduck1 I have a feeling that the generic briviact is my problem. Can I afford the name brand not really. Retirement can suck.
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2 ReactionsI ave used tegretal, keppra depakote manicotti, some others I don’t remember, but dilation has been the drug I always came back to, seems to have less side effects. Problem is, it goes thythe system fast and if you miss a dose, well you might have a seizure, I have had probably a 100 or so over 45 years. And like a football player all that rattling of your brain really does a number on your memory, I’ve been told I may have degenerative brain disease. Oh well I’m always hoping to find something new. I plan on doing some work with mushrooms soon.
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4 Reactions@adoptivemother I started at 17, it is such a difficult time, you want to be active but the drugs slow you down and hurts your social life. But, you have to take the drugs or you might end up crashed into a tree, or face down on a concrete floor. But I will never stop looking for something else.
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3 Reactions@santosha I’m on my fist round of generac briviact, I’m moody, angry, some times even mean. My short term memory is getting worse, my eyes and ears are breaking down. I will run through this 30 day script. But I’m going to my dr I can’t deal with it. I’m not suicidal but I would rather be dead.
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2 Reactions@nitsuait Good Morning
Yes, please do talk to your doctor as soon as possible. I had a similar experience while taking Tegretol, which caused me to have suicidal thoughts. In such circumstances, I would advise not to wait to see if you will better adapt to the medication after a 30-day script.
Did your doctor consider putting you back on Dilantin, the drug that up to now has worked best for you?
Please keep us posted on how you are doing.
Sending you strength and hoping for a quick and positive response from your doctor. 💜
Chris
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1 ReactionHello @nitsuait,
Most important - tell your Drs what’s going on to get help right away.
I felt the same way on Keppra, and told my neurologist “if you don’t take me off Keppra I’m not going to make it”.
At the time I was refusing all anti anxiety and antidepressants - I’d never needed them before. I’ve since accepted them as an essential part of my treatment plan. E-meds are strong and have unintended side effects on our mood, emotions and sense of well-being. My elileptologist prescribes my E-Med, and a psychiatrist prescribes the mood meds and my Emergency E-med.
Generic Briviact is not available in the US. A generic may not be as good as brand name. Briviact is supposed to more targeted and better for mood than Keppra. However, I’d pair it with antidepressant &/or anti anxiety meds.
Best of luck - we are with you!
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2 Reactions@nitsuait
You might try contacting the manufacturer UCB (Union Chimique Belge)
To see if you qualify for one of their programs to help with the cost.
For example, the CBD medication Epidiolex used to cost $32,000 a year but one connect member got it for $10 a month and another member got it for $20 a month so perhaps UCB will provide some assistance. Certainly worth a try.
Take care,
Jake
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2 Reactions