The Beginning…

Thank you for decided to read my first ever blog post!

I am in no way a blogger, I have never done anything like this before so bear with me if it is awful haha! 

So… I would imagine that if you’re reading this, you have more than likely been affected by epilepsy in your life. If this is something new for you, I know how scary it is and just know that you are going to come out the other side! I wish I had someone to tell me this when I was going through this.

THE START OF MY JOURNEY:

My journey started exactly one year ago today, 23rd December 2017. It was, of course, 2 days before Christmas and I was in the town centre for lunch with my family. I felt absolutely fine, there wasn’t anything out of the ordinary or anything to make me feel like I was coming down with something. We had a really lovely lunch and decided to pop round the corner into the high street to do some last minute Christmas shopping and my Mum and brother decided to go off to see if they could find something for my birthday (29th December). I was with my Boyfriend, Ed, in H&M and I came over really, really weird. The ONLY way I am able to describe the feeling was that it was, what seemed like, an ‘out of body experience’ (I was completely aware that I was in this state, I hadn’t lost consciousness at this point). It felt like everything around me suddenly became really overwhelming and noisy and I didn’t feel like I was actually there but more of just watching what was happening – Sorry if this is making no sense at all! I had to sit on the floor and, as I had never had anything like this before, I didn’t know how to react and neither did Ed. We joked around about me sitting on the floor in the middle of a busy shop and I got up and went over to the back where it was slightly less busy. I continued trying to look for things, trying to act as normal as I could and at this point, I started to panic. I looked at Ed and felt myself come over odd again, this time was different. I looked at Ed and all of a sudden saw flashing lights to my right, I was blinking very fast and then I completely lost consciousness.

I don’t remember anything from this point during the seizure but I will explain what happened just in case this helps someone!

I started convulsing. I fell onto Ed (luckily I didn’t go backwards) and he put me to the floor. He shouted out for someone to call an ambulance and someone called for them to come. Weirdly enough, there was someone else shopping nearby who had some sort of first aid training and they were asking if I had anything like this before and also calming Ed down too.

I had a tonic clonic seizure. These seizures are the most dangerous and definitely the scariest for someone to witness. I stopped breathing, my body went very stiff and my heart rate slowed down a lot. I started to turn blue around my neck and ears until I started to come round again.

By the time I had gained consciousness, the paramedics were there with the ambulance and I just threw up almost instantly. They were telling me what had happened to me but nothing was making sense and I wasn’t able to take or retain any information that was being said to me. My Mum and brother were there and my Dad was on his way to me. As a family, they were all so worried as, not only has this never happened to me before, but it hasn’t happened to anyone close to us or anyone in our family.

At this point, we didn’t know the cause and we weren’t sure exactly what was happening. I was taken to hospital where they put me on a drip and did some tests. As my tests all came back that I was stable, they let me go home and I slept for about 24 hours straight!

The next few days are a completely blur. I wouldn’t be able to tell you what I did on Christmas Day or what I did leading up to my birthday… This is the bit that gets to me the most as this happened to be my last Christmas with my Grandad and I do not remember a thing about it.

I was then asked to go and see a Consultant at Southend Hospital in the New Year and they explained to me that they were sure it was an epileptic seizure. This was odd to hear and I was in complete denial. I was trying to explain that I haven’t had this happen to me before and I was completely unaware that I had this condition. They started me on medication from that day and I was asked to go for further tests.

During the tests, I had to have 2 MRI scans and 2 EEGs. All of these tests came back positive to Temporal Lobe Epilepsy.

As you can imagine, I was absolutely devastated. My driving licence was revoked for 12 months, I had to go on strong medication for 5 months which made me feel like a zombie and the rest of the medication I need to take for the rest of my life.

When I was diagnosed, a lot of people were asking me if I could look at bright flashing lights and whether I would be able to go to the cinema or go clubbing etc. I have explained this in the past, but Photosensitive Epilepsy is actually the rarest form of the condition!

My epilepsy is around sounds, emotions, tight spaces etc. I don’t really fully understand it myself and I have never really looked into it too much.

I will do another post about my medication and how I got through it but wanted to make this first post as it has been a full year since all of this happened.

Don’t get me wrong, it has been a very long journey and I am still not 100% there yet but I can now see a light at the end of the tunnel!

You can read up on Temporal Lobe Epilepsy (TLE) by following the link below:

https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/symptoms-causes/syc-20378214

 

Thank you for reading, I will speak to you in my next post!

R xx