The Weird Side of Epilepsy

If you’ve been living with epilepsy for a while now, you may probably relate to some of these weird things. By “weird” I mean everything from unexpected side effects, new feelings, hallucinations and even changes in personality. Everyone experiences epilepsy differently, so here’s some weird shit that has happened to me over the past few years.

Hallucinations: Specifically auditory and smell. I’ve written about the smell one but never about the auditory. Every few months I’ll hear ambient noise that isn’t there, like a mass amount of people talking, dogs barking, babies crying almost like I am in a tall building of a busy city. Nothing is distinct and of course me being my dumb ass, paranoid self, the first couple of times this happened I thought it was ghosts. I had a freak out moment in the middle of the night where I seriously thought I was being haunted.


It was ridiculous. I realized when I used earplugs and the noise didn’t go away that it was all in my head. Sure enough I had connected this with bad med compliance days and during med tapering specifically.  As far as the smell goes, I never trust my own sense of smell anymore. Read about that here.

When I was taking Topamax I had one side effect that was so upsetting (and trivial) that I swear pushed me over the edge. I love soda, it’s my vice. So one day when every soda I drank; anything carbonated tasted flat I freaked. It is the oddest feeling to ear the carbonation, feel it tickle your nose and then as you drink it’s all of a sudden flat day old soda. It also made tomatoes taste like metal and a lot of other things just off or slightly rotten. It was a very confusing and irritating time. It took a few days after I was off of topamax to gain the sensation back. I was so worried it would never come back, because I freakin’ need soda in my life. No wonder people lose so much weight on topamax, nothing tastes good and you can get so depressed. I was expecting the typical side effects like drowsiness, irritability etc. Not for it to mess with my taste buds.

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Personality: I have mood swings that just come out of the blue. They are one of two kinds, paranoid OCD cleaning manic panic mode or overly happy/bubbly and extroverted. Both of which freak a lot of people out. Including my boyfriend. Things that set this off are usually major unexpected changes in my schedule. Which, includes having to go out with a group of more than three people in two weeks. Not a fan of people.


If I am suddenly happy to see you and striking up a conversation that isn’t “Hey, how you doing” something is wrong an alien has taken over my body.

Along with the personality comes the deepest hate for any emotional movies. I will refuse to watch it. If I do I am stone cold, no feelings other than mad. I hated Interstellar purely for the fact that I can’t stand how much Matthew McConaughey cries.

cry.gifI have no idea why this crap suddenly makes me angry but it does. Yet, I cried during an episode of The Orville. And I mean bawling, I usually save that emotional outburst for like once a year maybe. Who am I?


Well, those are just a few weird ways epilepsy has manifested itself in my life.

What are your odd/unique/fun/scary experiences that don’t seem like just normal problems?


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