My experience with Epilepsy.

One day I was riding my bike out the front of my house, when I could feel another one of my ‘funny feelings’ coming on. It wouldn’t go away, and was one of many that I had already had that day. I was sick and tired of having to constantly deal with those feelings in my head, and I inevitably broke down and told my mum. 

I think I was around 10 years old at the time, though I cannot be sure. She knew something wasn’t right with what I was telling her, and she made a doctors appointment. It was confirmed that I had ‘absence seizures’, a form of Epilepsy also known as ‘petit mal’ seizures. 

Absence seizures are caused by brief abnormal electrical activity in the brain. A doctor once described it to me in a more child friendly way - imagine your brain sending messages all over your body telling it what to do, when suddenly the messages get confused, and there is a ‘break’ in its journey. It is this ‘break’ that causes the seizure. 

These seizures are different to the types of seizure you may already be familiar with. Instead of falling to the floor and shaking violently, my seizures instead caused me to blankly stare into space, like I was daydreaming. I was later told that my right arm used to shake, but I never once knew that was happening. These seizures would only last a few seconds at a time, but I would have what felt like a million of them a day. 

One thing that sticks out to me in particular, is that I would remember clearly being able to tell if I was about to have a seizure. My left side of my brain began to feel a little funny, almost like a dull ache, and I would think ‘here we go again’. It is hard to explain how my mind felt during the seizure, other than it felt ‘odd’. Despite websites claiming that the person is not aware during absence seizures, I was somewhat aware of my surroundings during mine. While not completely focussed, I would remember being aware that I was in the midst of a seizure and that I had to wait for it to pass. I remember vividly trying to sleep at night, and being frustrated that the numerous seizures I was having were preventing me from falling asleep. 

Perhaps what was most frightening was the auditory hallucinations that I encountered during almost every single one.

If one of my seizures came on while the TV or radio were playing in the background, the voice that was playing would always turn into another voice that would be the same during every seizure. It was always saying the same thing, but I could never quite grasp what exactly they were saying. I remember telling myself ‘next time, really focus and try and remember what the voice says’, but I never could. It wouldn’t matter what was playing on the TV or radio, it would always turn into the same voice. 

I also remember one particular occasion, where I had a seizure while sitting at the dinner table with my family. I remember being in the midst of the seizure, and my mum trying to talk to me, clearly unaware that I was having one. I attempted to say ‘sorry’, and that it would pass in a minute. It turns out, while in my mind I was repeating the word ‘sorry’, I had actually asked my dad if ‘kings have jesters’, something totally  irrelevant and random. I didn’t even know the word ‘jester’ at that age. It still blows my mind that I could be so sure of what I was saying in my head, yet physically something totally different was coming out of my mouth. 

I remember having a seizure one evening in my living room, while ‘Sooty and Sweep’ were on the TV. Their voices changed to the voice I always heard, and it freaked me out. Ever since then I avoided Sooty and Sweep in fear that it would induce a seizure. I started becoming so sick of them, that that is when I finally told someone which I explained above. 

Looking back, it is likely that I had these seizure for months, or even years, before I told somebody. I remember having one while my great uncle attempted to teach me the ‘Peter Piper picked a peck of pickled peppers’ tongue twister, which is possibly one of the worst things to hear when your brain is already confused! We only saw him when I was VERY young, which means I almost certainly had them for years and years. I also remember staying at the printer blinds I had in my bedroom while trying to get through the pesky occurrences while I was trying to sleep, which I had when I was in primary school (aged 5-10).

 I remember it all coming to a head when I was in year 5 (age 11), and my mum having to inform my teachers of what was happening. In the same year, I had approached one of my friends and asked them if they ever have those ‘funny feelings’ in their heads too. They said they did, even though I kind of knew they weren’t really paying attention at the time, and just kind of assumed that having them was normal. They didn’t cause me any pain, or cause me to act any differently, so I had no reason to question them. Because it looked like I was daydreaming, chances are no one even noticed. 

In the year after I told my mum, we kept a record every day of how many I was having. I can’t remember the exact numbers, but I’m guessing it was around 5-10 a day. 

I had many hospital trips, where I underwent blood tests, EEG scans (little electrodes are attached to your scalp, and they detect the electrical activity in the brain. For one of them I had to lay on the bed in the dark hospital room and try to fall asleep, while they lowered a screen in front of my face and flashed bright lights) and MRI scans (brain scans). This may be the reason why hospital lights give me such bad headaches today. 

As far as I can remember, I never received any treatment for my epilepsy. They weren’t even sure of a cause - we were told it was likely due to stress, as I was an anxious child who was also having friendship problems at school. Absence seizures are more common in children, and I was told I would grow out of it, which I did.

A doctor however once told me something which always stuck with me: ‘it’s like a dormant volcano. Once you have it [seizures] it could always come back again later, maybe in years from now”. 

Me and my epilepsy today

Luckily I grew out of the absence seizures, probably a year or so after I told someone about them. There have been occasions since, however, that makes me wonder if they ever truly left me.

When I was particularly stressed in school during my GCSE exams, I developed a head twitch where my head would constantly want to turn to the side. It was reminiscent of the feelings I would get in my head before a seizure, but it never came to anything. However, during one Geography lesson I had been daydreaming and came around to find I had written a bunch of random words around the map I was working on. I don’t remember doing any of it, and I never worked out whether it was a seizure or not.

Since then, despite the life stressors that have come my way, I have not had a full blown seizure. I do, however, frequently feel strange feelings in the side of my brain, and have a momentary second of fear that I am about to have a seizure. Weirdly enough, these feelings seem to occur at oddly specific times - either when I am walking up stairs, or if I look at a clock. The only way I can describe it is like intense deja vu. I have since googled it, and there seems to be a link between deja vu and epilepsy, which is something I may look into. 

Having these seizures was one of the most intense and stressful times of my life. I remember thinking to myself ‘I hope I never have them again’, which is what makes my deja vu moments pretty terrifying to me. 

Hopefully I’m rid of them now, but who knows - maybe those feelings of deja vu are actually minor seizures that only last a second or so. 

I have considered contacting a doctor, as some days they are more frequent than others, but I haven’t as of yet. I shall update this post if I do!