Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
Connect
@louissc
My pleasure Louis!
Yesterday, I watched an interesting new episode of Seizing Life from CURE Epilepsy:
Epilepsy and Medical Trauma: Recognizing, Accepting, and Healing
https://www.cureepilepsy.org/seizing-life/epilepsy-and-medical-trauma-recognizing-accepting-and-healing/
If you have the chance, watch it before your appointment tomorrow — it might bring you some useful insights.
It's winter time down here, and quite a few people are coming down with colds, myself included!
Take care,
Chris
View Translation
-
Like -
Helpful -
Hug
1 Reaction@santosha
Hi Chris,
Unfortunately I missed my appointment on Thursday and had been rescheduled to Monday. On the bright side, that means more time on Briviact. Let’s see how it goes! I fell asleep while watching the video link you kindly shared yesterday evening 😄 will continue watching later.
Thanks!
Cheers,
Louis
-
Like -
Helpful -
Hug
2 Reactions@louissc
Hi Louis,
This can happen to any of us. Monday is just around the corner, and in the meantime, this new Seizing Life episode might give you some additional insights to bring to your appointment.
Have a nice weekend!
Chris
View Translation
-
Like -
Helpful -
Hug
2 ReactionsI’ve been on Brian’s for about a year and a half, yesterday was my last day, thank god! First it’s really expensive, I payed $393 per month until I hit my deductible. Second it’s hard to get pharmacies don’t want to carry it because it’s so expensive and it’s schedule V narcotic. So I would call for a reorder as instant refills never came, I would have to wait for up to a week for the medication to come in ( you do realize this is an epilepsy drug). Also it had to be pre-approved, and you were only allowed 30 days worth. My symptoms are exactly as you described depression, anger, a couple small seizures, which is way better than a room rocker, but still what if I was doing something dangerous like bowling. I was so excited when I heard that a generic was being offered, but as is often the case my symptoms doubled, especially the anger and suicidal thoughts, and that’s just not like me. Today I start on Lacosamide, I will let you know what I think. It is a schedule V, and needs pre approval, so it’s not all fluffy clouds.
-
Like -
Helpful -
Hug
2 ReactionsBriviact not Brian’s
-
Like -
Helpful -
Hug
1 Reaction@cathy5161
Hi Cathy,
I am so sorry to hear you are dealing with such struggles with your medications. AED's are so hard to predict what will work and what will cause side effects. My son, Keegan, has a very difficult diagnosis to treat. He has MTS. His epilepsy is very resistant to most AED's and he's very much the person who will have the rare (uncommon) side effects of the medications. He had the worst response to Gabapentin. We ended up in the hospital for a week. Please remind me, what medications are you and on how do you feel? What kind of side effects are you having? Have you spoken to your doctor? My son is now on Epidiolex (pure CBD) and lamotrigine. When switching to Epidiolex, Keegan was seizure free for about 2 years. Let me know if you want more information. I would be happy to talk with you.
Kerry
-
Like -
Helpful -
Hug
3 ReactionsHi @nitsuait
Finding the right AED is often a trial-and-error process. I went through that myself along my epilepsy journey. It wasn't easy, but resilience and persistence paid off in the end.
I looked for a dedicated discussion on Lacosamide here, but couldn't find one — the posts about it are scattered across different threads. Would you be open to starting one? It could be a good place for members currently on Lacosamide, or who have been in the past, to share their experiences.
Wishing you good results with it, and stay in touch!
Chris
View Translation
-
Like -
Helpful -
Hug
1 ReactionSure , this is day 2, but I’m all about sharing my experience.
-
Like -
Helpful -
Hug
2 ReactionsI decided not to seek treatment on NTUH after my interaction with the international patient office and continue with my current local neurologist and his advice on the recommended dosage till my next review on 7 September. Since the lead time for this medication is super long (3 months approx), the clinic nurses ordered me another 3 months worth to continue after September should my neurologist and I decide to continue consuming it. It’s also rather expensive (it’ll cost me ~$7.50/day) this I had decided to cut it if it proves to not worth the price. After the initial “honeymoon period” of 6 seizures-free days, the seizure is returning albeit not daily (once every 3 days, min. 2 days). There had been 2 continuous higher intensity ones on Thursday & Sunday last week with me losing consciousness after -30sec but the rest were of low intensity which were barely noticeable with me remaining conscious and seldom stretched beyond 15sec. It’s now ~ 6 weeks since starting this medication and admittedly it’s too early to tell whether it works or not. No any side effect to report beside being slightly more tired (could be due to other AEMs too) and waking up a bit earlier than usual. My body can tolerate medication’s side effects rather well, so whichever medication I took during younger days e.g antibiotics left me with nothing to worry. Will keep everyone updated how Briviact goes for me. How’s procuring this medication like for anyone? Are you facing long lead time too?
Cheers,
Louis
-
Like -
Helpful -
Hug
1 Reaction@santosha
Hi Chris,
I did enjoy those episodes and bring me plenty of new perspectives way too many to name here. Thank you for sharing! Appreciate it.
I hope your cold is way better now. My caregiver got it last week, much better now and my mild fever is mostly gone (I think) but that’s what happened last week. Better, thought healed for couple of days, only to return. I chose not to take paracetamol and let the body do what it’s supposed to do because paracetamol only eases the symptoms but doesn’t cure the underlying problem. My voice is still a bit “heavy” but then that’s what it’s like 11 days ago. I’ll need to go for blood test if this continues. But I certainly don’t like having needle poked into my blood vessel.
Cheers,
Louis
-
Like -
Helpful -
Hug
2 Reactions