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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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@laura1961
Indeed, the ketogenic diet has been most extensively studied in children, and that's where most of the evidence originally came from. That said, according to Dr. Alejandro Scaramelli, the results achieved at Hospital Británico with adolescents and adults have been quite encouraging, and comparable to what has been reported in pediatric studies. Larger-scale research in this population is still needed to draw more definitive conclusions — but the early findings are genuinely promising.
Wishing you all the best!
Chris
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3 ReactionsHi everyone. This is my 1st post here, after having been diagnosed with refractory multifocal epilepsy at one of the leading neurological hospitals in the country back in 2017. Compared to 9 years ago, obviously conditions were much better but improvement had hit a wall. Mix & match + of various drugs now made the intensity of seizures less, but frequency remains i.e. almost daily for 10-20 sec. I believe many already know these 20 episodes is enough to cause serious disturbances to one's quality of life.
I finally decided to "prep" myself for a 2nd opinion in the event the current specialist I'm consulting decides to retire or due to unforeseen circumstances. Thus, to first get the paperwork out of the way, I decided to visit another hospital in a different country. The specialist took a look at my current list of medication and said no harm trying Briviact. It's apparently Kappra v2.0. I didn't hide the fact I seeked a 2nd opinion from my longtime specialist, and he agreed no harm trying. Just 1 problem - Briviact is not as widely prescribed where I live so it may be difficult getting supply. I will update all of you how the effect for me turns out.
I had not lived more than 3-4 days without seizure for 9 years. The 1st specialist said for me, surgery was out of the question because it wouldn't be just a small section of brain to be removed but a huge part. Had any of bros and sis here been told surgery is out of the question? Or is it just the lack of the confidence of surgeons?
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2 Reactions@louissc
Sorry to hear your epilepsy is refractory. I've had epilepsy for 60 years, generalized refractory for 45 years.
My seizures stopped at age 59 as long as I was compliant in taking my medication. Have your doctors consideredany type of neuromodulation?
Take care,
Jake
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2 Reactions@jakedduck1
Hi Jake,
Life begins for you once again! What kept me going all these years is - the thing I’ll do if I ever am seizure free. As for neuromodulation, I had heard about it but not discussed the possibility with my doctor. Perhaps I should the next time I drop by his clinic.
Cheers,
Louis
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1 ReactionHi @louissc
Welcome to the Epilepsy & Seizures community at Mayo Clinic Connect!
I have been diagnosed with temporal lobe epilepsy with mesial sclerosis on my left hippocampus, with seizures that have been difficult to control.
At one point, I was being considered for surgery on my left temporal lobe, but thankfully decided to seek a second opinion first. That second opinion was against the surgery, as the risks would have outweighed the benefits, and instead recommended exploring other treatment options beyond traditional AEDs. That is how I began treatment with pure CBD — known as Epidiolex in the US — and later incorporated some specific dietary approaches. Together, these have helped reduce my seizures and restore a much better quality of life.
You mentioned that you visited a hospital in another country — I would love to hear more about that! Would you be willing to share which country it was? I am quite curious!
Wishing you all the best, and I hope you find a great deal of support here in this community.
Chris
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2 Reactions@santosha
Hi Chris,
Thank you for the warm welcome! I am currently seeking treatment in Singapore, a pretty small nation, with only approx 150 newly diagnosed cases of epilepsy annually. Thus, names of many types of epilepsy are still new to me (despite having had it for close to a decade). Same for names of medication, some which I had forgotten.
I went National Taiwan Univesity Hospital (NTUH) in March. An interesting thing about NTUH is them mixing traditional Chinese medicine (TCM) together with western. The line for neurological medical care is clearly drawn in Singapore, where I am currently seeking treatment. And I felt since pairing that with the possibility of working with multiple pools of medical doctors from more/different departments will help my case, I decided to explore more options.
I spoke Mandarin during consultation, and communicated via email using Chinese although their International Medical Service Centre (IMSC) staff seemed pretty fluent with English. I just didn't want any misunderstanding.
Taiwanese medical care quality over there are also of high standard. I was advised to set aside at least 2 weeks for my first full consulation which will be a hospital stay. And of course, a visit once every 2-3 months thereafter. However, as a foreigner, I will have to be prepared locals will come before me for medical care due to reason none of us can predict.
Let me know if you wish to know more details! In another thread I was asked if I made a special preparation of any sort for international travel. I will share more of my travel experience there.
Cheers,
Louis
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1 ReactionMy pleasure @louissc !
Your mentioning Singapore as a place to seek epilepsy treatment did not surprise me, based on a recent experience of my own. I just returned from my trip to Uruguay — a small country of only 3.4 million inhabitants — where I had the opportunity to get to know the keto diet center of the British Hospital, focused on treating refractory epilepsy in adults. The center is officially listed by the International League Against Epilepsy (ILAE), placing it among a select group of formally recognized keto diet centers worldwide. I live in Brazil, a far larger country, and have never come across a keto diet center at any major hospital here.
How interesting to learn that in Singapore they combine both traditional Western and traditional Chinese medicine. I have great respect for TCM. I remember once visiting a TCM doctor while living in the Netherlands — recommended by a Chinese friend — and appreciating the treatment, though I cannot recall what the condition was at the time. I had not yet been diagnosed with epilepsy then.
My current neurologist here in São Paulo city is of Taiwanese descent, though he seems to follow very little TCM in my treatment. He recently spent some time in Taiwan and may have reconnected with TCM practices during his stay. I plan to mention NTUH at my upcoming appointment in late April.
When are you planning to travel to Singapore? I look forward to hearing more about this combined approach.
Chris
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1 Reaction@santosha
Hi Chris,
Apologies if there's a misunderstanding. NTUH is my 2nd choice, and I am currently seeking treatment in Singapore. NTUH is the one which will combine TCM with western medicine with treatment, and that's the interesting part about them.
Since you had already been to Uruguay and had previous experience in Netherlands, I guess you had weighed the pros and cons of seeking treatments in your current country of residence and foreign ones. I am still deliberating between the option of completely seeking future medical treatment in NTUH or continue with this specialist who saved my life then.
Cheers,
Louis
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2 Reactions@louissc
Hi Louis,
Thank you for the clarifications!
Now it's my turn to apologize for any misunderstandings. During my time in the Netherlands — 1998 to 2001 — I didn't yet know I had epilepsy. Looking back, I say thankfully, as the health system there was quite disappointing. That's also why my Chinese friend took me to her TCM doctor at the time.
I have lived with epilepsy since my teenage years, though I was only diagnosed at 48, in 2019, when my seizures worsened.
Brazil has excellent doctors and private hospitals overall. Yet, through my own treatment journey, I've found that epilepsy specialists are surprisingly scarce — even though it excels in certain areas, oncology in particular.
Would you mind sharing more about your epilepsy journey? You mentioned that your specialist saved your life — did you experience status epilepticus?
Chris
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2 Reactions@santosha
Hi Chris,
I’m glad to share. It’s only through sharing we get to know more about different options and medication. And then, we can discuss with our respective doctors possibilities.
Fortunately or otherwise, I was diagnosed 10 years ago in my mid 30, which was before COVID. The medical system everywhere wasn’t in a mess. I was having a high fever, and family members (including me) + GP thought it’s just normal fever and I was prescribed paracetamol. When I fell 6ft from the bed 1 night and convulsing, wife knew something wasn’t right, called for ambulance which sent me to nearest hospital (publicly run). There, scans /tests were done, they found nothing wrong except a slight laceration in skull probably due to the fell from bed. It had to be some sort of a bacteria infection, and they found that to be in multiple areas. If they performed a surgery, almost most of brain had to be removed. With me being given 5%, family refused to give up and transferred me to a local privately run hospital. I lied there in ICU and then ECU for 2 months before i awoke with my tracheal tube deemed safe to be removed. After so long immobile, I had to undergo physiotherapy to regain muscle strength before being discharged (with almost a USD $1m bill thankfully paid for every cent by insurance) with the next challenge - a long list of medication to control seizures e.g topamax & kappra & epilim etc to be consumed daily with once every 2 months consultation to see what worked and didn’t till today. That’s what made me considering a 2nd opinion, but I also feel bad about cutting off the specialist who had saved my life and and been with me all these years. But he might have ran out of ideas with surgery out of the question but then still think he can do it after almost a decade. But my life is mine, and how many decades do I have left in my life? The quality of my life had droppe with this almost daily seizure although the intensity isn’t as high as almost a decade ago.
Oh and then 3 years later after the 1st incident during the COVID period, I had a fever (though mild), fell in the bathroom and was bleeding all over. I took paracetamol myself as I thought it’s just a mild fever and didn’t associate it with epilepsy. Ambulance was called once more, rushed to a different hospital and the doctors there associated the fall with epilepsy and advised me to seek treatment with the same doctor in that same hospital since it’s still only 3 years since I was discharged. I was in a stable condition then, and took that advice.
That’s my journey. It’s certainly not as long and painful as many here had experienced. Medical care in a Singapore private hospital isn’t cheap. All the scans and tests I took during consultations were still paid for by insurance but I had to plan for the future, thus Taiwan. Local publicly run hospitals have a long waiting time before tests/scans & consultations can be done for niche fields like neurology although quality is as good with much cheaper fees. 1 caveat, generic drugs are often the prescribed ones.
Yup, I am still deliberating.
Cheers,
Louis
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