Epilepsy and me: Nation.Cymru’s news editor writes about life with Epilepsy

Emily Price – News Editor

This has happened before. Or do I think it did and it didn’t? No, this definitely happened before. Not just déjà vu, it happened. I’m reliving something. I can’t breathe. I’ve skipped through time. I know what’s going to happen before it does. I’m going to throw up. There’s music, and a weird noise. Why am I such a freak?

For as long as I can remember, I get intense feelings of déjà vu. The feeling comes with a certainty that I am reliving a moment in time or I’m inside a dream. A dream that I knew would happen. I can hear a song, the same song. It’s always the same. A tune that hums overlaid with a screeching and I know it so well.

But after the moment has passed, I can’t remember it anymore. I’m reaching out for it, stretching my fingers to get a hold. It’s smoke on a windy mountain. I can’t remember what the déjà vu was or the tune. The intense memory I was just reliving that was scary and vivid, it disappears and I’m left feeling empty.

When I was young, I was certain I could see the future. It was scary and I didn’t tell anyone for fear that I would be locked up in a damp cell. When I was 12, I asked my sister what it means to relive a dream or moment. She said that it’s called déjà vu. I asked her why it makes you sick. She frowned and said no it doesn’t. I decided not to discuss these episodes again. It was clearly only me that had this problem.

Sickness

As I grew, episodes became more frequent. I would be in school and déjà vu would grip me in a wave of sickness and confusion. I would know the signs and often sit in the toilet on my own until it went away. I would cry angry tears. Why is this happening to me? WHY?

In my early 20s I felt controlled by it. I was at home with a new-born baby with days spent putting her down quickly as soon as the déjà vu began, fearing I would drop her. There was a day when I had five episodes within a few hours and I typed into Google: “Why does déjà vu make me so sick?”

The answer was temporal lobe epilepsy. I sat and read all afternoon the precious answers that Google provided me with. For the first time in my life there was an answer that didn’t point me out as a freak or a time traveller.

I saw my GP and finally explained everything. I was worried I would be booked in for an appointment with a therapist but no, I was sent straight to a neurologist who said I had textbook temporal lobe epilepsy. It was difficult to explain to friends and family and they had so many questions.

“If you have epilepsy why don’t you fall down and shake?”
“If you had these feelings, why didn’t you ever mention it?”
“Are you sure that neuro is right about this?”

Brain scans confirmed a slowing in my temporal lobe indicating I was epileptic. My provisional driving licence was taken away. I had been having lessons and was keen to get some independence. A year seizure free. That’s the goal so I can learn again. I’ve been aiming for that goal for 10 years. I know it’s never going to happen.

Depression

And so came the medications. The first brought with it the unwanted gifts of extra seizures and depression. My husband filmed one of the seizures and for the first time I got to see it. Mumbling, groaning, mouth twitching. It revolted me. That person wasn’t me, I looked out of control.

The next medication made my face swell with blisters. I felt ugly and stopped going outside. On to the next medication, which thankfully had no side effects but also made no difference to my condition. The next medication came at a cost, making me so tired I would need 12 hours sleep every day and even then by 2 o clock I could barely stay awake, so I’d drink copious amount of coffee to combat the sedative side effect.

When I cross a road, I move as fast as I can. What if I have a seizure and get hit? What if I’m holding my daughter’s hand? When I was working at a coffee shop a few years ago, I removed a tray from a 250-degree oven when a seizure began.

I could feel the wave rise inside me. I thought, no, it’s fine, carry on, there’s people watching. I removed the tray from the oven just as I became trapped inside my own mind and did it without oven gloves. I spent the rest of the afternoon running my scalded hand under cold water and went home feeling like a liability.

This Christmas, I got my husband two of the same t-shirt and my daughter two of the same toy car. My memory is beginning to slip away after years of seizures. When I put something precious in a ‘safe place’ and never see it again I get angry with myself. Last year I read the same book twice and didn’t release it until I reviewed it and found a review from a few months before.

Scared

As an adult my seizures still reduce me to the same scared child I was years ago. Hiding in public toilets whilst I’m controlled by my brain after an aura of déjà vu warns me I’m tipping over the edge.

I’ve yet to find someone who really understands what it’s like. I once discovered a famous journalist suffers with the same type of epilepsy as me. I contacted her; told her I was scared.

She said I shouldn’t be afraid, there’s fantastic medications out there. I felt special because she had taken the time to get back in contact with me. She understood, she was the same and me and she had even carved a career out for herself whilst dealing with her own episodes.

A few years later, she made a statement in an interview:
“All epileptics are freaks…”
I think about what she said every day.