What are the common misconceptions about epilepsy?

SPEAKER_1 (0:00)

The Hard Shoulder, with Ciara Kelly and Shane Colman, on Newstalk, with Kiya.

Shane Coleman (0:08)

Now, Kelly Earley is a columnist at The Journal and co-host of podcast, A Tech's Sake. Like many of us, I suppose, she thought she'd a fair understanding of what epilepsy was. That is, until she was recently diagnosed with it. Since then, Kelly has discovered the hidden symptoms and the daily challenges that come with the condition. And she's here to tell us more. Kelly, thank you indeed for talking to us. It's a brilliant piece that you've written on this and a very honest and eloquent piece.

Let's start. You were recently diagnosed with epilepsy. Just tell us your story. How did that come about?

Kelly Earley (0:43)

Yes. So I suppose what's interesting about it in my case, well, there's two things. One is that I'm nearly 32 years old and I had a seizure when I was probably about one or two. My mom had been at a funeral and I was in the pram and she realized I was having a seizure and it had been put down to like a fever or overheating. It's called a febrile seizure that kids have. They're actually quite common in kids under the age of two. One in 20 kids will experience a febrile seizure. So it doesn't indicate that someone's going to develop epilepsy later in life or anything like that because they're so common. So from then until this year, epilepsy was apparently lying dormant in me because it was six months ago now in April. Just on the most normal Sunday afternoon ever, I was gone for coffee with my two sisters. We had been out on a nice walk and while we were in the queue for the coffee, I started to just feel a little bit strange.

And by the time we had sat down, I was just overwhelmed with a feeling of deja vu. And this is something like you could mistake for anxiety or a panic attack or whatever. And I just kept saying to my sisters over and over again, I'm having really bad deja vu. I can remember this or like I couldn't tell what had been a dream and what had been real life. And it was just one of the most unusual sensations I'd ever experienced.

And they were like, yeah, okay, we get it. We have deja vu because they didn't realize that is a symptom of anything more serious. And it was only when we got home, they were talking to me and maybe three times I had said something and they were like, you've already said that three times. And I was like, okay, I was a little bit alarmed. So what happened was that my short-term memory completely vanished. I went home to go to sleep and my partner also was like, well, you've been repeating yourself a lot.

So it was that point we decided to go in to A&E. And again, like I thought they're going to laugh me out the door in the matter when I go in and say I've had deja vu. But they took it really seriously and it made pretty much straight away.

Shane Coleman (3:01)

Okay. And good for them that they did as well.

What are some of the things you've learned about the condition since being diagnosed with epilepsy?

Kelly Earley (3:12)

So for me, those type of seizures, they're called focal aware seizures because you don't lose consciousness. And that's not something I would have ever associated with epilepsy. We all generally have a pretty narrow idea of what epilepsy is or what causes it, whether it's flashing lights or that kind of thing. Even though flashing lights only impact 3% of people with epilepsy. So it's actually quite unusual.

But I've learned that there's actually 30 different types of seizures. Mine is, it happens in the temporal lobe, which is where your brain processes memory and that sort of thing, which is why I was having that sensation of deja vu when the seizure occurred in my brain. So there's so many different types and it goes beyond what we expect. I think for me, my symptoms and a lot of the different types of epilepsy I've learned about. Again, you could mistake it for anxiety. You could mistake it for a migraine, to be honest as well. And I'm sure there's probably people who are going about their business and dealing with these things as a recurrence and not actually realizing that they have epilepsy.

The other thing is that the tonic, tonic is what they call the seizures, where there's like muscles stiffening and jerking and the type of thing that we would have all seen on TV or like that sort of thing. That is just one of the types of epilepsy. And some of the other types are like symptoms or a prelude to more serious seizure like that happening.