Dealing with epilepsy

Why I started counting my seizures again

For those who read my earlier post, you already know that I stopped counting my seizures between 2001 and 2005. This was the decision of an adolescent (I was 17 years old in 2001) who didn’t want his life overturned by epilepsy.

In 2006, a series of events came into play. I started my Bachelor studies in 2003 and, soon after, I had seizures “out-in-the-open”. I wasn’t ready to tell everyone that I had epilepsy. But, in my junior year, I had a seizure in the IT lab, almost breaking a keyboard with my head (I still have a scar over my left eye). After that I had a seizure in front of the grocery store near my dorm and so on. Before my first exam (math), I had a seizure (5 minutes before to be more precise).

Being dragged with an ambulance to the local neurology hospital and questioned about my seizures and medication, I realize I didn’t knew what to say: how many seizures, what was the cause or the circumstances of each, in what kind of environment did they happen and so on.

That was when I started counting again, and for good reason. If I wanted to cut the number of seizures (or get rid of them altogether), I needed a precise medical history to be able to provide the doctor with information on how to change my medication if needed.

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3 thoughts on “Why I started counting my seizures again

  1. Counting seizures can be a daunting task. It feels like your almost living for them. However, keeping a seizure journal can uncover so much useful information. Times, dates, what you were doing, foods you were eating, how much sleep you had the night before, a rating of your stress level. You won’t always have to count the days or number of seizures but for the time being it might really help your doctors. Sending hugs

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  2. I guess I’m one of the happy ones with little seizures right now (had 2 this year) which makes it easier to count. But your idea of a journal is interesting. I never thought about it.
    I only wrote down the dates and tried to remember what happened before, if I felt something (an aura), if I was stressed because of something, the amount of sleep I had the previous days and so on.

    My seizures are mainly stress and fatigue related which, in theory, makes it easier to control, but, in practice, those are the hardest things to control.

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  3. Yea. Absolutely. I would say I am one of the “happy ones” right now too as I have only had one in over a year. So my journal is much much less than previous years. However, when I was having many twice a month 3 days in a row – the journal actually helped my doctors figure out what testing would benefit me. A lot of details totally worth it.

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