Blog · Dealing with epilepsy

Electric Saturday

Today is the 25th of March 2018, a Sunday. Things are their usually weird.

But…

Two weeks ago, a Saturday, the 10th of March 2018, things were really, extremely weird. I was out shopping together with my wife a little boy (2 years old and growing) in Zara. Looked at some clothes and shoes for the kid, bought something and took the elevator down to leave the store and counting our shopping elsewhere.

In the elevator, I fell a sudden shock….like I was electrocuted…and dropped my back. My wife got scared and the kid was looking at me….like…. “say what?!?”.

Usually, this happens before a seizure Continue reading “Electric Saturday”

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Blog · Dealing with epilepsy

Death to epileptics

Suicidal thoughts are one of the side effects you can find for every type of AED. Criminal thoughts are less likely, but it appears on boxes from time to time (see Fycompa).

Although I think about (not suicide, nor murder) death sometimes, I never had such thoughts.

And I was wondering: what does death mean to epileptics? A relief? Something to be afraid of? Continue reading “Death to epileptics”

Blog · Dealing with epilepsy

Fycompa

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 “Fycompa”

Blog · Dealing with epilepsy · Misconceptions

Elon Musk’so first principles applied to epilepsy

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 “Elon Musk’so first principles applied to epilepsy”

Blog · Dealing with epilepsy

Video-EEG, refractory epilepsy and more seizures than usual

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 “Video-EEG, refractory epilepsy and more seizures than usual”