Epilepsy (Part 2)

Hi Everyone, 

This next blog post is part 2 of the Epilepsy topic. I hope you all enjoy reading it. If anyone has any questions then you can leave a comment at the bottom of this post in the box or I can be contacted, by private message on my Instagram page. (@Caalleeyy) 

The reason why I wanted to write about epilepsy in my blog was because I too have been diagnosed with epilepsy. Here is my story...


At aged just 2 and a half years old, I had my first seizure. I was taken into hospital right away but then as soon as I was better, I was sent home because the doctors thought it was a one off. Not too long after, I suffered from another seizure and then another and another... My Mum was then told that I had epilepsy. 

I was given loads of different medications in order to control it but nothing had worked. When I was around 5 or 6 years old, I had around 250 seizures in ONE week! I don't remember this at all but I do remember being hooked up to machines that monitored my brain activity. I spent most of my childhood in Glasgow's Childrens Hospital and also The Sick Kid's Hospital in Edinburgh. Both places did everything they could to help me and I remember the nurses in both hospital were just amazing and helped to make everything less scary for me. Some nurses even brought me extra ice cream sometimes! 

At aged 7 years, my epilepsy finally was controlled. I was able to live a "normal" childhood again. I was held back a year at school because I had missed too much schoolwork. It didn't really bother me though. I was just happy to be able to run around with my friends and go out on my bike. I was no longer covered in wires or stuck in a bed.

The epilepsy stayed away and I was able to come off of my medication. I was free of seizures and I felt happy. None of my friends really, at the time, understood what epilepsy was so they didn't realise how much I loved being outside and being able to run around and feel free. My luck with having no seizures soon turned bad...

I was in a "relationship" (if you'd even call it that!) when I was around 17. Unfortunately, that relationship wasn't healthy and I was hit over the head with an Xbox controller. I felt really tired after being struck over the head and I fell asleep almost right away. When I woke up a while later, I felt okay and the guy I was with did his usual "I'm sorry. Are you okay?" rubbish. I had to leave him after that as it wasn't healthy to be in a relationship where the person thought they had to be in charge of everything or even feel the need to physically hurt you. I wasn't having it!

Shortly after ending the relationship, I was sitting at work and began to feel really funny. I kept getting the feeling that you get if you are on roller coaster and you're going downwards or upside down. My boss called me to her office because I had forgotten to do a whole load of stuff and I was convinced I had done it. I was suffering from confusion. I kept apologising and telling her, "I know this has happened before, Izzy, but I'm really sorry". My Boss Izzy looked as confused as I felt. She was worried about me and sent me home to rest for the day. 

(Picture taken from Istock)

Days had passed and I still felt the same both at work and at home. I couldn't get rid of the feeling. I kept getting headaches and I was always daydreaming. My Dad was constantly having to speak loudly at me to get me to listen to him when he spoke as when I was daydreaming, I wasn't even aware that my Dad had been talking. The only way to get my attention, we thought at the time, was to just keep shouting until I eventually "snapped out of it" and heard him. I decided to make a doctors appointment and thank goodness I did!

During my Doctors appointment, my doctor was like "Caley? Caley?? Caaalllleeey? Can you hear me?" I was like "Yes! Sorry. Why do you ask?" He then explained that I had sat there for a few moments just staring blankly into space. I had no idea what he was talking about.

I was referred to a neurologist at my local hospital and after having some tests, it was confirmed that my epilepsy had came back and that I was having seizures again. I had been having absence seizures the most. Absence seizures are when a person stares blankly into space and is unaware of what is around them or who. (This would explain why I also never heard my dad talk when he had to raise his voice to get my attention). 

(Picture take from Young Epilepsy)

After receiving the news about the epilepsy, I instantly felt like I had punched in the stomach. I remember being a child and losing out on going to parties and going out with my friends because I was constantly in hospital. I felt like now that I was an adult really, what could I lose now?

My independence would be the answer to that. Well at least that's how I felt about the situation. The seizures were ongoing and would last seconds at a time every so often, every day. I was then told that unless I was seizure free for a whole year then I wouldn't be able to drive a car. I was looking forward to being able to have my own car and drive everywhere like my friends did. That was taken from me. I also couldn't go to nightclubs as most of them had strobe lights and this would also trigger a seizure for me. I hid in my house most of the times as I was so afraid that an absence seizure would happen whilst I was talking to someone and that they would think I was either not listening or just being rude to them. I also didn't want to feel embarrassed by admitting I had epilepsy or that I was having seizures so I felt that by staying inside my house, I was protected and I wouldn't have to explain myself.

(Picture taken from Google Images)

My friends kind of gave up on me at times because I would always say "Oh sorry, I can't come tonight. Not feeling good." The truth is I felt fine, but I didn't want to ruin their night as they would be the ones who would have to go and get help or First Aid. 

At another appointment with my Neurologist, he explained to me that I was still experiencing absence seizures, but also "auras". I was then prescribed Keppra tablets that I was to take several times every day. In the end, they weren't working so my Neurologist suggested increasing them, gradually, up to 1000mg per day. 

(Picture taken from Google Images)

At 26 years old now I still have absence seizures and aura's but now I also have Tonic-Clonic seizures again, Clonic seizures, and Atonic seizures. My memory sometimes isn't great either. I've learned to accept that although I'm epileptic, it doesn't stop me being ambitious or living my life. At times, my epilepsy has made me feel like a prisoner in my own body or at home but other times, it's made me realise just how strong I actually am. 💪

I've been epileptic most of my life and I still continue to battle it today. I have survived every seizure, every storm, every negative comment that a stranger has thrown at me. (My favourites are "Are you drunk?" whilst feeling a seizure coming on OR "Well you don't look epileptic to me!" The cheek!) I will continue to be strong and live the best life possible. Epilepsy has made me the person I am today and that person has became a mother, a fiance, has went to college for the last few years, and is off to university in September to do Psychology and Maths! 

If you too have epilepsy, then remember - you are a warrior and you've got 
this!

(Picture taken from Google Images)

I just want to quickly add that if it wasn't for the amazing doctors, neurologists, nurses, etc. then I wouldn't be writing this! The NHS is just amazing and these people saved my life. I will FOREVER be so grateful to the specialists who never gave up on me and continued to support me in, what were, the hardest years of my life. THANK YOU ALL SO MUCH!

Caley 💜