Community Forum

Tracking Seizures


 I was recently diagnosed with TLE, and am learning more and more about these kinds of seizures. My main symptom which lead to testing for epilepsy was memory issues. I would go through "spurts" where I'd have terrible short term memory, and sometimes I'd have complete gaps in my memory where I was awake but felt like I wasn't present in my life at that moment.

 Anyway, several tests later, I got my dx and am now on Lamictal. Right now I can't drive, and my neuro has requested that I keep a journal of my seizures. But this is the problem: I am not aware of, nor do I remember my seizures. Even my neuro admits that I probably have auras or warnings (because I have a limited history of odd feelings in the stomach and smells that didn't exist), but that I likely don't even remember those let alone the seizure itself.

 So I've been keeping a journal and writing down EVERYTHING that I thought was strange. Including pain, tingling, confusion (because these are all symptoms that I originally presented with), but my neuro seems only interested in my memory problems (my neuro is a whole different issue). But I don't remember not remembering! So I'm wondering if anyone out there has any tips or advice for keeping track of this kind of seizure.

 Obviously I'd like to drive again (and I live in NH so the restriction is 1 year after last seizure), but more than that I'd like ensure my safety and the safety of those around me. How can I do this when I don't even know that I'm having seizures?

 Please share your thoughts with me!


I'm desperate! If anyone has ANY suggestions at all, I'd love to hear them.

I sure don't have any brilliant ideas -- that's a tough one.  I would suggest though that you just do the best you can.  Write down everything you can remember, even something as simple as the upset stomach, headache, etc.  If you notice any lapses of time, write those down too.  Include how you feel in the morning, how you slept, even how you felt during the day.  Those are things that might give the Dr. some clues.  Also, if you start writing down EVERYTHING, you might become more aware of when the seizures are coming.  Good luck!

Thank you! That's pretty much what I'm doing now, but I hadn't thought to track how I feel when I wake up. I'll keep plugging along and hope that this helps!

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