Epilepsy and a Blot on the Landscape…

Over the past few days, I’ve been reminded again (as if I needed to be) as to just how much daily medication changes me. Due to a mix up that’s just too farcical to go into, I didn’t have my proper dosage of either meds that I take for a just a couple of days. Just to be clear, I take daily anti-epileptic drugs and daily anti-depressants. Anti-everything in order to live a pro-life! Maybe I’ll get to how that makes me feel later. I know medication changes me. Those of you who have been on this blogging journey with me for a while, will know that I struggle with being constantly medicated. 

After just 2 days of less drugs than I normally take; this is how I feel. Remember this was a forced withdrawal, if you like, this is not a gradual, doctor-sponsored reduction in medication. Cold turkey.

  • Disorientated
  • Unable to make a decision
  • Upset & weepy
  • Headachy
  • Weak
  • Scared

I’m functioning on the periphery of my capabilities. I know what to do and I know how to do it, but I’m terrified that I’m doing something wrong. The world around me has slowed down and I feel hyper-sensitive to everything. The fear of fitting is so much worse than a seizure itself, in my opinion.

When I woke yesterday morning, I felt OK. Lying in bed, posting on FB and basically ok. Then I got up. Then the world shifted ever so slightly out of focus. I knew that I was going to the chemist to sort some meds, but I also knew that this was not going to be a quick “take a few pills you’ll be fine” situation. That’s the rub. So, went through the morning routine, went to the chemist, became irked at the assistant’s inane chatter and hyper-enthusiasm, but squashed the frustration down deep so he didn’t see it. I got on the bus to head to work. The weirdness spreading through my veins reached a new height. I didn’t want to be on the bus, I was scared I wouldn’t know when to get off it. I got to the office and explained to my boss that I didn’t feel right and I explained why (my work are good about my epilepsy, can’t fault them for the support they give). My boss asked me if I wanted to just go home. I didn’t know. I couldn’t decide whether to stay or go. I didn’t know what was going to be better and the frustration at that was bubbling up. I told him I didn’t know and couldn’t decide. He asked me if it was ok if he made that decision for me and he sent me home. I’m grateful for him for doing that. I took my laptop and I went home. The bus journey home held the same fears as the bus journey to work had. I don’t know why I didn’t get a taxi. I knew I probably wasn’t going to fit, I was too aware for that, but I also knew I wasn’t making the best decisions of my life. 

I spent the rest of the day doing little bits and pieces of work that weren’t particularly taxing. I went to bed early and, of course, I didn’t sleep well at all.

So, how do I feel today? Well, I’ve had my meds, but I still have a weirdness (wish I had a better description of that feeling) that’s hanging around. The world has speeded up a fraction and I’m probably a bit more on the ball than I was yesterday. Fear is there and there is also a bizarre sort of throbbing heaviness in some of my muscles.

Think I’m in for another rough day.

2 thoughts on “Epilepsy and a Blot on the Landscape…

  1. Sorry to hear about how you’ve been feeling. I have epilepsy and lately have been having frequent seizures – almost daily. I’m considering getting VNS therapy, but I’m still not sure. Check out my blog “Growing and Living with Epilepsy”


  2. Hi Kirsty,

    I’ve also had the “weirdness” you describe, either for no reason or a possible missed dose of my meds. it’s so hard to describe to people but you seem to be lucky with your work at least – mine were not as understanding when I came in some days like that and eventually they found a reason to make me ‘redundant’. Even now I struggle to explain in interviews that outside of the epilepsy I am actually quite capable. I hope it gets better for you.



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