Yes those words have stuck with me for a long time. Before this experience, I honestly thought Epilepsy was flashing lights. Every week when the X Factor would come on and they would say ‘contains flashing lights’ I’d always think, that’s for the people with Epilepsy.
WOW could I be any more naive and wrong. If you’re reading this and you’re thinking, I thought that too, it’s actually why I’m writing this blog so stick with me.
For the Epileptic activity I suffered the easiest way to explain it is through describing the structure of the brain. The brain is split into 4 sections; frontal, parietal, occipital and temporal. Each part of the brain is responsible for different functions. I have epileptic activity in the left frontal part of the brain. The frontal part of the brain impacts on your personality, behaviour, emotions, intelligence, concentration and self-awareness.
In terms of it not all being about flashing lights and falling down on the floor – I never fell on the floor ever and never lost consciousness. Probably one of the biggest challenges I face which I mentioned in one of my previous posts was that I always looked ‘well’. Epilepsy is largely an invisible disability which most people don’t understand. What we know is that there are a number of different types of Epilepsy as well:
Photosensitive – (flashing lights)
Who would have thought that what X factor were talking about was just 1/10 of the different types of Epilepsy.
Now my initial response when someone tells me they have Epilepsy is “what type of Epilepsy do you have”? As you can misjudge someone’s type of Epilepsy very easily.
Enough of me trying to educate you, what happened next?
As I said previously, I can’t behave ‘ill’ even when I felt like I’m dying. I had a girls holiday lined up that I had been looking forward to going on for so long, to Barcelona. I mean you can’t miss going to Barcelona come on!!
I was not with it though, I was on the medication, Lamotrogine. I remember being sat at my desk at work and electric shocks were going through my face, down to my teeth and I was blacking out. I convinced myself that once we got to Barcelona though it would all stop, maybe I was Vitamin D deficient? Don’t laugh ha.
All I was focusing on was getting to Farringdon station and we were getting the train to Gatwick. I remember being sat on the floor at Farringdon thinking, I shouldn’t go but I didn’t want to let the girls down. That wasn’t in my character and I kept thinking, I look absolutely fine so it would seem a bit extreme.
When we got on the plane, the air pressure (I think) made everything 10x worse. My friend was really hungover from the night before, but she realised how unwell I was, it was one of those weird moments where she suddenly became alive because she knew I really wasn’t well. I said, “I can’t talk, it causes me so much pain so don’t talk to me”. It really was, absolutely excruciating, it felt as though electrical signals were clashing inside of my brain, my brain was shutting down and the pain was amplified every time I spoke.
Walking from the plane to the AIRBNB, well I wouldn’t have got there without her, I was like a complete zombie. We arrived, and I got straight into bed and was hallucinating chemical bonds in front of my Eyes. Not the start to Barcelona I had been looking forward to, that’s for sure.
I managed to get through the holiday to Barcelona, my jaw was COMPLETELY locked at times, I literally could not open my mouth – I’m sure anyone who knows me and knows how much I talk are thinking, thank goodness, something shut her up! 🙂
Invisible illnesses is something that I’m really passionate about, a picture is worth a thousand words, who would think I was extremely ill in this picture enjoying some seafood pasta on the seafront in Barcelona? Always remember, you don’t know what someone is going through, and some people are better at hiding their problems than others.
Towards the end of the holiday, I started to develop large lumps on the side of my neck. I felt extremely alarmed and panicked by this. Obviously you google and it always comes up with the worst case scenario. I convinced myself I had cancer. I really wanted to go home at this point.
After another horrendous flight due to the air pressure (I’m surprised I’m not put off flying) I got home and went straight to my local GP about the lumps on the side of my neck. He said no, you’re absolutely fine, probably just a bit run down. I was thinking, I’m not run down, I’ve just laid by a pool for the last week, the last thing I am is run down. I was super panicked though, I went back to the Dr’s 3 times and kept being told it was nothing to worry about.
Then that weekend the scariest of things happened, I was on my own in my flat, I was sweating buckets, my heart felt like it was skipping beats, I was extremely breathless, I came out in a huge burning rash and my vision, the room felt like it was closing in on me. I couldn’t move, I was completely and utterly stuck. I had no choice but to call an ambulance.
After a night in A&E, doing all the tests on me, they could visibly see how bad I was. Saying things like ‘you’re sweating buckets’ and ‘wow, your neck is so swollen’ and ‘wow that rash looks really itchy’ – DUH, why do you think I’ve called an ambulance. I do feel sorry for people who work in hospitals and ambulance staff because I was so frustrated that this was their reaction and yet I was pretty easy to offend because I felt so awful, but they are just doing their best, an amazing job. They concluded, it had nothing to do with Lamotrigine, I had glandular fever or a virus and was likely to have picked it up on the way back from Spain. I asked them numerous times, are you sure it’s not the Lamotrigine.
You may be thinking at this point, why did you not just stop taking the Lamotrigine yourself? It is made extremely clear to you that you when you are prescribed Lamotrigine that you must not stop taking Lamotrigine as it can actually cause seizures.
On this basis and the hospitals advice, I took my evening dose of Lamotrigine and everything happened again, but 10X worse. I had no choice but to call an ambulance for the 2nd time. This time the ambulance took 5 hours to arrive, I lay there not being able to move for 5 hours. When they arrived they said ‘you could have walked quicker’ and ‘you should have recorded the episode’. I don’t even need to commentate how that made me feel, and it annoys me so much that I say something negative about the ambulance service because I know in general they are so overstretched and they do the best that they could.
I spent the rest of the night/day in hospital, they said obviously it must be the Lamotrigine and I should stop immediately.
I had my appointment with my Neurologist the next day, and given how unable I was to speak due to the stress in my last Neurologist appointment, I asked my friend to come with me to ensure that I articulated myself. I had everything that had happened written down on my phone, and so did she. The neurologist was horrified that A&E told me to continue taking Lamotrigine as apparently 1% of people have this serious reaction to Lamotrigine and the medication needs to be stopped immediately. It’s a difficult one because you can’t expect A&E to know everything as they are generalists, but should they have known this?
Comment your thoughts below.
Alex Pringle aka Mind Wandering Traveller