How new mum Gina was diagnosed with epilepsy
Gina explains how, as well as learning to be a new mum to her baby son, Charlie, she also had to learn to cope with a diagnosis of epilepsy. But humour and positive vibes are pulling her through.
My journey with epilepsy began three years ago- shortly after the arrival of my son Charlie. I had a very normal pregnancy and birth and we were delighted to start family life as a three.
The first few months were hard but fantastic, just as they are for any mum and dad whilst adapting to this unfamiliar, new parenting world. But nothing prepared us for the next unexpected new world we were about to face...
One morning a close friend of mine came to visit Charlie at our house. I was tired and didn't feel quite 'right' but just put it down to being exhausted with a baby, who was still only a few months old at the time.
Feeling of déja vu
As we sat on the sofa having a chat, a wave of the strangest sensation came over me. I felt completely numb, forgot entirely what I was talking about mid sentence and felt as if I was in a dream. It was a déja vu feeling but more intense and whatever I was trying to say, just wouldn't come out my mouth and form into proper words!
I remember feeling embarrassed and shocked and I knew from that moment something wasn't right. I told my partner, Dan, about these 'black outs' and they occasionally happened but life continued as normal. Quite a long time passed before another type of episode emerged- episodes that were branded as panic attacks until early 2016 when I was diagnosed with epilepsy.
I was in my room one evening- I think I was just putting some clothes away. Out of nowhere, I experienced an overwhelming sense of pure fear that hit me for absolutely no reason. I don't particularly like doing chores (ha ha!) but this feeling was like nothing before.
As dramatic as it sounds, the only way to describe the intensity of the fear was that it was as if someone was about to kill me! It sounds crazy talking about it but the feeling was that strong!
I called Dan in a panic which led to even more panic when I realised I couldn't hear myself scream! Dan rushed in. I felt numb, petrified and out of my body. It only lasted about 30 seconds before I came round. My doctor said these episodes were panic attacks and I was given advice to prevent further ones.
Jumping out of bedroom window
The scariest but funniest episode like this was in the night when I jumped out of my bedroom window petrified and half conscious and believing I had to escape!
Luckily, I jumped onto the extension and on to a bin so I wasn't hurt and I vaguely remember running down the road!
I remember coming round about 10 houses down from us, then I freaked out and ran back home.... all with only a pair of pyjama shorts on!! To this day I believe no one saw me and my boobs and thankfully I got home safe!
Depression sets in
It's a funny story but it could have been so much worse. I began to feel down and not in control of my own body anymore. Depression set in. Perhaps a combination of post-natal depression too. The episodes were increasing and becoming an issue and I knew in my heart that there was more to this than just panic attacks.
Why was I always blanking out? Am I just having lots of déja vus? Am I going crazy? I never had panic attacks before- maybe I'm not cut out to be a mother? Perhaps I've got a brain tumour!? So many questions. I had a lot of time on my hands to torture myself with possible theories. I was avoiding social situations as I dreaded people noticing that I was acting oddly. I'm naturally a sociable and happy person but I wasn't anymore- I was falling into a dark hole.
One night, Dan thought we'd have some time to ourselves and put a film on and we cuddled on the sofa. It wasn't long before that random feeling of fear hit me, I screamed and went numb. And that was it. We weren't going to be watching a film that night. I had a tonic/clonic seizure.
An EEG scan showed I had abnormal activity over one side of my brain and it confirmed I had temporal lobe epilepsy. I was devastated but strangely relieved as I finally knew what was the matter with me. My MRI scan was normal so that meant my brain looked fine and there were no funny lumps or bumps- my brain waves just had a mind of their own! Haha excuse the joke.
I was put on a medication called Keppra and we gradually increased it until my seizures were minimal (most of the time!) I have to avoid alcohol, getting too tired and I generally have to look after myself better.
But with all this said, I still have potential to have seizures and it generally is out of my control. So why worry too much about it? I've learnt to apply common sense to tasks that could be dangerous and always think... Could that harm me, my child or anyone around me if I had a seizure?
Today I'm a different person. My attitude towards epilepsy is much healthier - I'm not bitter towards the condition now as I was in the beginning! I feel positive about the future which is so refreshing!
So my advice to people with epilepsy? Well everyone's condition varies - ie their type of seizures and frequency and so on so i can't give specific advice. But I will stress one critical thing- stay positive! Have a sense of humour about it and tell people about it!
I was embarrassed to begin with but the more I chat about it, the better I feel. If others around you know how to deal with a seizure, including children, the more comfortable everyone will feel knowing there's help available if needs be.
I'm currently in the process of writing and illustrating a children's rhyming book about epilepsy! It will teach children what epilepsy is in a simple and light hearted way and teach them how to help you if you ever have a serious seizure. I'm going to give it to my son when it's done. I hope other parents might follow suit and give it to their children....
Positive vibes for epilepsy!