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Fycompa

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I had an appointment yesterday at my neurologist. This came after a week-long video-EEG monitoring at the end of April and a PET scan done last week. During the video-EEG, I also did some neuro-psych tests, but I did them in a language (French) that I understand at an average level. He didn’t get all the results for my tests, but that’s not important.

My PET scan showed some asymmetry in my left frontal lobe. The doctor said that he doesn’t have all the statistics yet from the scan, so it’s hard to understand the results.

But he did decide, with my consent, to add another AED to my treatment: Fycompa. I’m already on Lamictal and Vimpat, and the doctor said that I’m almost at the toxic limit. Continue reading

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Elon Musk’so first principles applied to epilepsy

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I was reading yesterday about how Elon Musk thinks and why is he so successful. People say that he “works” on first principles. I first heard about first principles when I was around 18 (so 15 years ago) when I was studying philosophy and going to philosophy competitions.

First principles = origins (of anything). Using first principles as a mental model (I’ll talk about this in a future post) is a thing to do. First principles tell you to break down a thing until its raw form that deters fallacies. It’s a weird explanation, but, in my head, it’s the right one.

In one sentence: break down a thing to see its origin and start your thinking process from there.

For persons with epilepsy, the example I am giving is Continue reading

Video-EEG, refractory epilepsy and more seizures than usual

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I haven’t written a post in quite a while here, but that’s because strange things have happened.

While before, I was having 3-4 seizures per year, 2017 started with a blast. I have 4 on January 9th, followed by seizures March -> one on March 4th and 5 more on March 26th. It was a game changer.

I was on Lamictal and Vimpat at the time and my neurologist, after my the 4th of March seizures decided to increase my dose of Vimpat (via phone and email). He considered that the balance between the two drugs was off. That really didn’t work as a couple of week later, I had 5 more seizures. Continue reading

Some people are idiots, crazy, weird and more

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This last guest post is not really a post. It came from a conversation (on Facebook) I had two weeks ago with someone from Orlando, Florida. His name is Walter.

Walter said that he doesn’t have epilepsy and neither does anyone he knows, unless they are hiding it from him. For me, the last statement sounded weird, so I asked more details.

Walter said that people with epilepsy should be ashamed because they have it, because “they are scaring people on the streets, in cinemas, everywhere” (direct quote). Again, I asked for details. This is when I realized he’s a bigot. Walter said that “epileptics are directly responsible for their disease” because “they don’t believe in God and, if they believe, than it’s not the right God, for sure“. Continue reading

World Economic Forum, epilepsy and dealing with it

I was reading this morning one of David Nabarro’s reflections: HERE. It’s about chronic or non-communicable diseases, NCD’s in the eyes of the WHO. I haven’t seen any mention about epilepsy anywhere so I decided to dig deeper.

As the World Economic Forum is taking place these days and the hot subject is the “middle class”, there are many mentions regarding health in the discussions. No mention of idiopathic diseases, neurological disorders and more like this.

I know that epilepsy is not as “cool” like HIV, cancer, diabetes, polio. But really, not even one mention?!? Continue reading