@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