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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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I have been taking lamictal for years for TLE and my seizures were well controlled. Then I started experiencing mycolonic jerks in one leg. I was prescribed Onfi for this and it worked well for the jerks. Recently I have been having small seizures where I am kind of out of it for a few minutes so my neurologist increased the dosage from 5mg/2x day to 10mg/2x day. I started experiencing intense depression so we decided to try briviact. I took 25mg/2x day for a week then went up to 50mg/2x day. I took the 50mg for 2 days and I was so dizzy I had to hold on to walls and furniture to get across a room. My neurologist told me to stop taking it and has prescribed zonisamide. Its been over a week since I stopped and would expect the dizziness would stop by now since I took it for such a short period of time but I still get really dizzy if I bend over or move my head too fast. I am apprehensive of taking zonisamide because the warnings are basically the same as with briviact. Any input?
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1 Reaction@ldlauwers
Welcome to our group at Mayo Clinic Connect! I'm glad you found us, and I hope you'll find the support you're looking for here.
I'm so sorry to hear you're dealing with this dizziness. It's really difficult to manage daily life when you can't move without holding onto things. I hope this passes soon.
From my own experience, I've learned it can take time to adjust to new AEDs. Earlier this year I started a discussion called "How Long Does It Take to Adjust to New AEDs?" that you might find helpful. Here's the link: https://connect.mayoclinic.org/discussion/how-long-does-new-aeds-take-to-adjust/
I haven't tried Zonisamide myself, but I have experienced dizziness with other AEDs. It does seem to be a common side effect with many medications, and often it lessens once the body adjusts.
That said, since you stopped Briviact over a week ago and the dizziness is still this severe, I think it's important to let your neurologist know that. Have you been able to reach out to your doctor?
Chris
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@ldlauwers I have not had those specific side effects with Briviact - but that’s what this thread is all about - sharing info on Briviact. I find most E meds cause me coordination issues. Lacosamide in particular made me unsteady, so I have had balance issues on other meds.
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4 Reactions@ldlauwers I am on 400mg of zonisimide at night due to myoclonics for over 30 years. I found it to have the least side effects of any of the AEDs i have been on in the past.
it was also very effective in prevention of myoclonics.
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2 Reactions@stepklin Thank you for that input - it gives me hope it will work. She is starting me off on a really low dose and see from there. A week later and I still haven't completely recovered from the Briviact so I'm waiting a few days until I feel "normal" again.
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3 Reactions@earlylonghauler Can you explain "metal head" to me? I think it might be something I experience - I call it Brain Tase (like a taser).
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2 Reactions@santosha Yes, I have talked to her. That's when she recommended Zonisamide. The dizziness on briviact I experienced made it impossible to bear while getting used to it. I've had balance issues too but omg this was bad! I have seen that just about every AED has that side effect so I am really gunshy. It is great to find others who are in my boat. Im really glad I found you.
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2 Reactions@ldlauwers
I wish the best. please keep me updated. I am new on this support group site.
I have never seen so much zonisimide! my last neurologist had to look it up while we spoke on intake. and my current neuro, who I like very much for many reasons (except office communications )was less aware of it. his script has 200mg am and 200pm; while it is a nightly med. so i just do it the right way on my own.
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3 Reactions@ldlauwers
When I was first diagnosed, my physician said he had patients that called them "brain zaps" like a shock of static electricity in the head. That's not what I feel, but sounds like what you describe.
I started feeling MetalHead the day I started Briviact. It was weird and bothersome, but at the same time I took it as a sign that it was 'doing something'. Imagine crumpling up a ball of Aluminum foil, putting it in your mouth, and chewing on it. Or like your head is full of Mercury. Especially around the temples. If you look up "Pinhead" movie - the visual is a guy with a matrix of pins embedded into his head. Kind of like that but felt the metal inside. It is background sensation - when its on its on, and in the beginning it was on a lot. Less so 2 years in, hardly notice it now.
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1 Reaction@earlylonghauler Oh that's terrible! I am familiar with Pinhead. I hope that subsides 🙁
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