Many of us have heard of epilepsy, but what is it and how does it affect us? And how many of us even know we have it?
Epilepsy is a condition that affects the brain, and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affects how it works. Sometimes, seizures can be fatal, especially if you’re epilepsy isn’t ‘controlled’.
Summer 2017: My first experience of a ‘major’ seizure was in the shower, when I felt perfectly fine. Then within a flick of a switch I couldn’t breathe. The feeling of not being able to get any oxygen into my lungs hit me. I tried my hardest to open the bathroom door to get more air in but it was too late. I wake up slowly, at least 5 minutes later to a family member watching over me as I sat out the shower. I apparently was banging my head against the wall shockingly hard over and over again along with my eyes rolled up and my hands flapping. I was apparently very floppy and clearly unconscious, but something else was going on for me to be having those kind of actions, or so I thought.
I glance at myself in the mirror only to see the flash of a ghostly looking person, that was me. I was so pale and my lips had all the natural colour washed out of it. They were almost blue looking. I was in such shock about the whole event I just sat outside the bathroom just staring into space. I’ve never been unconscious in my life. I’ve never fainted, I don’t drink or anything. I ring my mum, she tells me to go to hospital straight away but I’m still trying to come to terms with what just happened myself. Stubborn me didn’t go and just thought I’d call the doctor tomorrow since it was about 5pm. I call the doctor the following day, to them questioning me about all sorts of things, then says she wants to see me the day after that phone call. So 2 days after the shower incident happened I attend my GP practice. I see a temp dr. He listens to what happened, obviously the accounts came from my family member but I just repeated them. He asks me if I drink or smoke. I answer no, so he asks me if I had a sugary breakfast. I answer not really, no more than usual. And he just put it down to that. A sugar rush. I wasn’t very convinced and wasn’t happy with what they said. I mentally answered in my head ‘I know it’s not that’ but I just thanked him and that’s it. I didn’t even have a clue myself what it was, Epilepsy, definitely wasn’t on my radar.
Winter 2017: Friday or Saturday night I was sleeping, then whilst I was asleep I had a seizure. I can’t really recall but I remember feeling something in my legs. My bedroom door was open so this was witnessed again and their words was ‘I was like a fish out of water’ my eyes were rolled back into my head with my neck very strongly strained back. I was shaking uncontrollably and erratically. They kept trying to wake me up but I wouldn’t wake easily, then when I did shortly after, my mum took me to hospital even though I didn’t want to. I thought there wasn’t a reason to, but she wasn’t having my objections. I reach A&E (emergency room) and they see me quite quickly, keep asking what happened, they take my obs like blood pressure and temperature and I have bloods done. Usually when I have bloods tests, because I’ve had a fair share in my life, it’s normally simple, and no issues happen at all. But this time my blood was pouring out whilst she was doing it and after. She tried to press down and get many towels but it was just flowing uncontrollably. I started realising oh wow there probably is something wrong. I see a Dr/nurse later on and they asked more questions. They say oh it’s probably nothing but they’re going to get the neurology department to make an appointment with me. I’m like okay that’s fine. Then she proceeds to give me some leaflets, one including something to do with epilepsy. I thought a little bit about it but not really, I just knew it couldn’t be anything serious like that.
Neurology calls me the following Monday morning, to see me that afternoon. I wasn’t expecting a call to be honest, especially so soon. I see a consultant neurologist, they ask me many questions and want to speak to my family member about what they witnessed. So I give her their number to call, after the appointment as she wished. She listens to all I have to say, I’m basically just repeating what I’ve been told since I can’t really recall anything especially the shower incident. She diagnoses me epileptic in that same appointment. And proceeds to say i’ll have to be on medication to control it for the rest of my life. I can’t miss one dose or else that could be fatal. The tone’s all very serious and there’s just nothing for me to say, I’m speechless. Also proceeds to tell me I shouldn’t do any dangerous sports or activities, like swimming in the ocean, jumping out of a plane. And even needing to have the bathroom door unlocked whenever I have bathe/shower. She asks if I’m planning on becoming pregnant? At the time I was 18, so I say ‘in the future yes’. And she repeatedly warns be how important it is to plan whenever I want to become pregnant with her as I’ll need many checkups at hospital and make sure the levels in my blood of the anti-epilepsy medication are maintained. If I wish to drive I’ll have to wait a year then after that if I have any other seizures I’ll have to be seizure free for 6/12 months before driving. It was just a lot to absorb.
I didn’t receive any therapy after being diagnosed. Even though I’ve heard you’re supposed to. I don’t feel like I’ve been supported as much I would’ve liked. They told me all the above and more and just basically left me to handle it as I wish. I was under the NHS so I’m not sure if that had a factor in the aftercare. I’m currently trying to get my provisional licence but it’s a long waiting game, after having to send off so many medical questionnaires and most the questions are almost impossible to answer precisely! Still waiting to be accepted but hopefully, it won’t hold me back.
Have you had any experiences with seizures, fits, or epilepsy? How do you or someone you know cope with it? Comment below!