Any Briviact experiences to share?

@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

@louissc
Hi Louis,
Thank you so much for sharing your epilepsy journey! It has certainly shaped you into a stronger person — and I truly admire that.
As I once shared in our group, epilepsy has also brought me some positive experiences. Here is the link, in case it resonates with you:
What are your Positive Experiences and Gains through Epilepsy?
https://connect.mayoclinic.org/discussion/positive-experiences-through-epilepsy/
I completely agree with you — through sharing, we discover different options, treatments, and perspectives we might never have found on our own.
I also very much relate to your feelings about the specialist who saved your life. My neurologist in São Paulo saved mine when I had status epilepticus back in December 2024.
This week, I have an appointment with him, during which I plan to discuss what I discovered at the ketogenic diet treatment center at the British Hospital in Montevideo. Fortunately, he is open-minded and not the kind of doctor who takes these discussions personally — and since this type of care is not yet available in Brazil, I believe he will understand. If I choose to go ahead with the keto diet treatment, I will still keep him as my neurologist. Perhaps you might approach your own specialist in a similar way, given that TCM and Western medicine are not commonly practiced together in Singapore?
You mentioned having had some form of bacterial inflammation. Did your doctors ever identify exactly what kind it was? I ask because it could potentially be relevant to understanding the origin of your epilepsy — it's worth exploring, if you haven't already.
Wishing you clarity and peace of mind as you make your decision.
Chris

@santosha
Hi Chris,

Thank you.

TCM & western medicine are not practised by the same institution in Singapore. This is what made Taiwan so interesting since both are. I’m afraid I cannot recall much of the bacteria much. I’ll see what I can get out of him during my next consultation with him come June. I’ll be heading to Taiwan for my initial scans after, wanting them to do and draw their own conclusions instead of what I will be telling them what I know from my specialists here.

The ketogenic diet which you had tried seemed promising and I’m also interested. Although for any culture which has carbo e.g rice forming the most significant part of a meal e.g Indians & Chinese, practising it can be a challenge.

I was surprised Briviact wasn’t a newly known drug to my specialist, but it’s only after mentioning it myself then he put me on it as well. I guess the patient pool here just isn’t huge enough for the specialists to put patients on different drugs.

May all turn out well for you.

Cheers,
Louis

@louissc
Hi Louis,
I realize I may not have expressed myself clearly — I have not yet started the ketogenic treatment at the British Hospital in Montevideo, Uruguay. It is still something I am actively researching and considering.
At my appointment this week with my neurologist in São Paulo, I brought the topic up for discussion. Thankfully, he is a very open and caring doctor and did not take my initiative as a sign of dissatisfaction with his care or treatment. He asked some very thoughtful questions, which I will look into further using the materials the Hospital Británico shared with me — and he also asked me to share those materials with him.
Regarding your comment about medication availability in Singapore, I felt something very similar in Uruguay. Here in Brazil, we have far more medication options, largely because Uruguay's small population — just 3.5 million inhabitants — limits what is commercially available there.
Since Briviact supply appears to be scarce in Singapore, would importing it from Taiwan be a viable option for you? And how are imported medications taxed in Singapore?
Chris

@santosha
Hi Chris,
I’m getting Briviact (3month local supply) from my current specialist, and about to start the 1 month supply from Taiwan before my next consultation here in June. My blood/urine +MRI scans in Taiwan I schedule it to be in July so I can meet with my Taiwanese specialist. That 3 month worth I got in Singapore will still be paid for by insurance before coverage expires so I decide to make use of it before that. Yes it’s hard to get it locally because the local agent of that manufacturer seldom or never imports it due to low local demand. That’s the problem with small patient pool. The medication options will be fewer. I believe you’ll also expand your medication options in Brazil.

Yes I’ll mention the taking duo path of TCM + western medication. After all, how many more years will it be before he retires and 10 years do I have to spend improving this condition? The tax will be a standard good & services tax one since there’s none for medication. The consultation fees and the use of non generic drugs at private hospitals which can make the costs add up pretty fast. But in return, the wait time for scans like MRI and tests (blood & urine) can be 1-2 days while at public hospitals it can range from weeks - months. No kidding. We can have world class facilities, but the problem is aging population.

Cheers,
Louis

@louissc
Good Morning Louis!
I tried searching online for more information about integrating Western medicine and TCM in epilepsy treatment — hoping to share something useful with my neurologist here in São Paulo, who is of Taiwanese descent — but couldn't find much that was concrete or well-documented.
Did NTUH provide you with any materials or resources about their integrative approach? And would you be comfortable sharing the name of the doctor treating you there?
Thank you!
Chris

@santosha

Hi Chris,

I haven't started anything significant with them as of today, and my first consultation with them was brief. It's like a "get-to-know-you" session. They merely prescribed me half a month of Briviact to start the ball rolling, Yeah I know it's not enough. My current specialist helped me get 3 more months of that. It's not one medication commonly used here, and it's not readily available like Topamax. The international patient centre (IPC) just contacted me last week to do scans over at their side. I didn't tell them too much besides showing them my current prescription, as I wanted them to draw their own conclusion my condition. I hope future sessions, if I am to decide to consult them for the long run, will be better organized.

I guess there won't be anything concrete being documented in English. Is your neurologist fluent in Chinese? Nothing had been given to me by NTUH and the topic of integrating TCM wasn't discussed then due to time constraint. That's one thing I will like to bring up during my next visit.

Cheers,
Louis

@louissc
Hi Louis!
Thank you for your reply.
First consultations are often exactly that: a getting-to-know-you session, so it makes sense that nothing concrete has been defined yet. I think your instinct to let them draw their own conclusions from your records was a wise one.
I'm glad your current specialist helped bridge the Briviact supply gap in the meantime!
As for my neurologist, he's of Taiwanese descent but was born and raised in Brazil. As far as I know, he is only fluent in Taiwanese, not Mandarin. From what I understand, both Taiwanese and Mandarin are spoken in Taiwan — is that right?
Wishing you smooth sailing ahead, Louis. One step at a time!
Chris