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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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Good Morning @ldlauwers
I'm happy to hear that this group has already been helpful to you!
I'm glad you've already spoken to your doctor about the dizziness you keep having, even after the change to Zonisamide. The good news is that everyone responds differently to different AEDs, so while dizziness is a common side effect across many medications, Zonisamide might work better for you than Briviact did. This reminds me of what my doctor says: "every patient is unique".
Crossing my fingers that your body will adapt better to Zonisamide than to Briviact—keep me updated!
Chris
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Hello @tvandongen
I haven't heard from you in a while—I hope you're doing okay.
How have things been going lately? Were you able to get a good neurologist referral from your primary care physician?
Looking forward to hearing from you!
Chris
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Are you still on Briviact? if so how has it been working for you? I have done a lot of research on these drugs & side effects too. I tried various drugs for 8 years which did nothing or made my seizures worse. My seizures were caused 20 yeras ago after a TBI caused by numerous blows to the head by my x. I finally stopped all meds in 2012 so have been doing some research to see what the newer drugs are like. They all still sound like they have terrible s/e & you have to take numerous drugs together. I thought may be this Briviact you could take as a single drug on it own? Thank you for sharing
@laura1961
Hi Laura,
One thing I've learned on my epilepsy journey is that medications work so differently for everyone — even people with the same type of epilepsy. What helps one person might not work for another, and vice versa. As my doctor always reminds me, each body is unique.
I was actually terrified to start Keppra after reading all those stories about "Keppra rage." But thankfully, that hasn't been my experience at all. Of all the typical AEDs I've tried, Keppra has given me the fewest side effects. That said, I know others with temporal lobe epilepsy (same as mine) who couldn't tolerate it at all.
Have you had a chance to explore Epidiolex (FDA-approved CBD) or pure CBD? My previous doctor prescribed pure CBD for me (Epidiolex isn't available in my country yet), and I've continued taking it since then. It's helped with my seizures with minimal side effects.
Here's a post from Kerry that might interest you: https://connect.mayoclinic.org/comment/1502120/
Her son has refractory epilepsy and has been doing really well on Epidiolex.
Chris
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I’ve been seizure-free on Briviact for 2 years now. It’s the only E med I take. It does have side effects but I’d rather have the side effects than seizures. My only concern with Briviact is it’s cost and availability. It’s a new med, only made in Switzerland by a single manufacturer, no generics. Keppra on the other hand is widely available as a generic. I think Keppra is the gold standard these days. Keppra worked for me, so there may be Keppra again in my future. Neurologists like to find a single med that works for you - more predictable - but we did discuss a possible mix of Keppra and Lacosamide in case Briviact did not work. Briviact worked for me right away. At the time I was averaging a seizure every other week, and Briviact stopped all seizure activity immediately. In a sense I took the side effects as reassurance that it was working.
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3 ReactionsHi Lisa, I see your post is dated 2020. Yeah, Epilepsy meds are addictive, simply missing a dose can cause a seizure. If someone without epilepsy starts taking them and stops, they will have seizures and epilepsy! At the ER a doc handed me a pill and said take this, you’re going to have to take it for the rest of your life.
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4 Reactions@ldlauwers I'm just wondering why... if the lamictal was what you were on for years and it was controlling your seizures well, did you start having the monoclonics while still taking the lamictal so your neurologist prescribed the Onfi for this? I would ask why I couldn't go back on the original lamictal that worked so well for years. But upon reading your post again, I thought perhaps the Onfi was taken in addition to the lamictal. I guess its pretty obvious that I am lacking knowledge regarding the treatment of seizures due to epilepsy.
I know its a very convoluted chain of events, lol. Yes the onfi was in addition to the lamictal. I started having the myclonic jerks so we started onfi. Then I started having some episodes we think are small seizures that onfi is not taking care of. The lamictal still works on my tonic clonic seizures but it is not working on the jerks or the new ones (nothing showed on MRI or EEG). The new "episodes" feel like I do just before a seizure and I am pretty sure that if I weren't on lamictal I would be having full on tonic clonic seizures. These changes could be just due to aging - I'm 63. That brings us to zonisamide. I have been taking it for almost 3 weeks and have built up to 150mg at bedtime. Each time we have gone up in dosage of the zonisamide I go without the onfi to see if its working at all - I realize its a low dose but still want to see. I am still having episodes and I take an onfi when I have one which seems to be working. So far the only side effect of zonisamide I've experienced is my food tastes bland and I had a headache for a few days but that has subsided. This Sun I go up to 200mg. Wish me luck!
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4 ReactionsI am taking Briviact and call it my miracle drug. I had used so many different seizure mixes of meds since I was 3 - I am now 60 - but I still had seizures. My neurologist had been trying to get me to switch meds but I didn't want new side effects as I have with different seizure meds. She put me in the hospital for a few days to observe my seizures and change my meds. (Of course I didn't have a seizure while I was in the hospital so they couldn't observe one!). I now take Briviact and Lamictal together. I have not had a seizure since 2019 - 7 years now. I was taking 100 mg in the morning and 100 mg in the evening. Then I thought the doc wanted me to go down to 75 mg/day so that is what I did - but she meant 75 2x/day. I didn't have any seizures on 75 mg/day but then a few months ago I started feeling shaky and my arms & legs jerky. Since I thought a seizure was coming on I took an extra 75 mg pill in the evening one night as originally that is what she wanted. Then I went to the ER per an on-call doc over the phone, and I the Briviact level was high - but since the peak in that med is 1-4 hrs after you take it that could by why - the ER took about 3 hours to take the blood test. But it could be an OTC of a different med that made me feel that way but I don't think so. Then I found out my Lamictal level is real high and online it says that could be a reason. Anyway... like I said Briviact is my miracle drug. I have Partial seizures - now I recommend anyone that has them if they have troubles with their meds to try that. I really haven't had any side effects except if jerkiness or shakiness is with that or my other meds I was taking. I think the different seizure meds over the years have affected my memory in different ways depending on which I was taking. As far as I had known Briviact is only for Partial seizures but they may have broadened that. I had never heard of it before the neurologist put me on it.
@earlylonghauler with my mix of Briviact and Lamictal I haven't had a seizure in 7 years. So glad you haven't had one in 2 years. I just wrote a reply to someone else so maybe you will read that too. When I had an insurance change I went to the Briviact website. You can fill out a form and it gives you stipulations on how you can get it for only $10. Anyway - I got that paper to take to the pharmacist - I think I did that for 1-2 months but then my insurance changed again. Since my doctor said I have to take Briviact rather than some other or generic (of which Briviact doesn't have I don't believe) the insurance has to approve it. So if the price is your concern you can check out their website. I didn't know it was made in Switzerland but I call it my 'miracle drug'. Many medication sites will help people with a lower cost if you ask.