Seizures 101

So Ashley, what is it actually like to have a seizure?

Oh, let me tell you.

I would just like to start with a question for you all.  Why is it when people find out I have seizures, the first thing they say is “I’m sorry”.  Like what are you sorry for exactly? haha Please don’t tell me you’re sorry, or you feel bad for me. There are far worse things in life than having seizures (especially mine).

To start off I’ll explain the kind of seizures I have.  I am not epileptic.  Usually, one of the first questions people will ask me. As of right now, there’s no reason doctors can find, why I am having the occasional seizure.  They think the triggers are: lack of sleep, stress, not eating properly and too much caffeine (so basically any university students life). I have tonic-clonic (or grand mal) seizures, which, unfortunately, in my opinion, are the worst ones to have. I like to call them the “Ashley Twerk”.  I lose consciousness, bite my tongue and cheeks and shake. They usually last (for me) 30 seconds to a minute, though tonic-clonic seizures can last up to 3 minutes. Another thing with my seizures is I only get them when I’m sleeping and I’ve only had a total of three over six years. One was in a hostel in Mexico, one was on an airplane to Toronto and one was at my house.

After my seizures, I feel confused, insanely exhausted (both mentally and physically), my body is extremely sore from being tensed and my tongue is sometimes numb and bruised from biting it. 2/3 times I didn’t know I had a seizure, people around me had to tell me.  During most seizures, I don’t feel, think or dream anything, but the one on the airplane I had, I dreamt the airplane propellers were chasing me and I was trying to dodge them, which is why I was shaking.. weird, I know.

The worst part about seizures isn’t even the losing your license part, which you do every single time you have one (first seizure is 3 months no license, then every time after that it’s 6 months), it’s the medication you have to go on.  There is no medication yet that fixes seizures, only medications that prevent them.  BASICALLY, in my opinion, finding a medication for your seizures is a trial and error process until you find one that you are able to withstand the side effects the best.

All the medications I’ve been on, I’ve completely hated (if we’re being honest here).
1) The first one I was on was Lamotrigine.  This one affected my speech the most. I constantly slurred my words and couldn’t remember certain words when I was talking. This medication also changed my vision 100%.  Both of these side affects my neurologist did not tell me about.  I was on this medication for about three years I believe, but then stopped taking it and had another seizure. *eye roll

2) The second medication is the one I’m currently on. It is Keppra.  It is the bane of my existence BUT it is one of the newest ones out (which supposedly means it’s supposed to be good).  With this one, I have found that, thankfully, hasn’t affected my speech (thank goodness) but it affects my short term memory.  So I am constantly losing my keys, wallet and phone everywhere I go cause I can never remember where I put them.  This one also affects my mood, giving me extreme highs and lows and bad anxiety.  Lack of energy is another side effect I have felt from both this medication and my first one.

There are far worse things in life, I know.

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3 thoughts on “Seizures 101”

  1. I’m currently on the generic form of keppra. It’s definitely been known to cause irritability and rage…aka kepprarage as they call it. Sometimes taking a supplemental vitamin can help reduce the side effects, but you need to talk to your doctor about that first because taking vitamins can interact with some medications. Ask them about vitamin B6 though and if it would be beneficial for you.

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