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of everyone affected by epilepsy

Sophie Hughes

I was 13 years of age when I had my first seizure. I remember waiting to get on the bus after a sleepover at my friends house, full of happiness after a girlie night. When all of a sudden I was overcome by a wave of disorientation. The next thing I know there is a paramedic asking me what my name is and do I know where I am? In my head I was thinking of course I know my name and where I am but when I tried to speak my brain and mouth would not work together and I had no idea what my name was or where I happened to be.
After a nights stay in hospital, I was let home and told that no further investigations would be made till I had another seizure.
Of course this happened and at 16 years of age I was diagnosed with epilepsy and placed on an anti epileptic drug; tegratol retard. At this point, I was told that I could not drink alcohol, nor could I learn to drive until I had been seizure free for a year. I wasn't really bothered at first and was very matter of fact about the situation. But as the weeks went on and my friends and I started going to parties where alcohol was available it became more and more difficult.
I now know that going out does not revolve around drinking and you can still have fun no matter what but try telling a teenager this when all her friends are doing it.
I never once drank on tegratol. As difficult as it was, I threw myself in at the deep end and embraced every situation. Luckily for me, I had such a supportive group of friends who I am eternally grateful for. I was never once made to feel like I was a weirdo or a burden - which were my worries as a teen.
After 18 months to 2 years of being on tegratol, shortly before my 18th birthday, I was refereed from a paediatrician to a consultant neurologist who was quick to tell me I didn't have epilepsy but NEAD - Non- Epileptic Attack Disorder.
This came as such a shock. I was so used to being 'epileptic' and after getting my head around my diagnosis, my world was thrown upside down.
It was made apparent to me that in my neurologists opinion, I did not have epilepsy but in fact I had a condition that was due to the way I thought about things and apparently the anxiety I have about situations.
I remember thinking what anxiety? I had always been a glass half full child/teenager, just ask my mum. Always seeing the positives in things. I was always the first on the dance floor, never afraid to get up on stage or speak in front of an audience etc.
So someone telling me I had anxiety was extremely weird. I was immediately weaned off tegratol and referred for CBT (Cognitive Behavioural Therapy).
I was very fortunate to be placed in the hands of an amazing therapist, who has helped me to understand the way I respond to situations subconsciously etc.
However, disappointingly I still had the same amount of seizures following this new diagnosis as I had on the meds.
From being 18-23, I believed I had NEAD and came to grips with my seizures and apparent 'triggers'. Lucky for me, I have an aura about 10 minutes before I slip into a grand-mal seizure enabling me to prepare. Get in a safe place and alert someone. During my aura, my right hand twists, rather like a Bollywood dance and I cannot control it. Also I can hear what is going on around me but I cannot communicate back. No matter how many times I have had an aura, I am still equally as terrified each time. Words cannot describe how frightening it is to be aware that you are going to have a seizure shortly but during your aura not being able to control what your body does or respond to anyone. They don't last long - 30 seconds max but it feels like a lifetime. You just want to scream help me but you are literally trapped until the aura stops and you can tell someone to be there for you.
During those 5 years living with NEAD, i was able to drink alcohol, to learn to drive and my dad bought me a beautiful fiat 500, which is my pride and joy.
Now, I am just turned 24 and have recently been referred back to a senior consultant neurologist as my seizures are still as frequent and to be honest, my family and I believed somethings just didn't quite fit together.
At my appointment, the senior consultant neurologist told me that after a
thorough look at my notes and previous scans, he believes that I have epilepsy and should be placed on lamotrigine. I began to cry, as did my mum. But emotions were we feeling? Anger, Relief, Sadness.....
I honestly cannot tell you what was going through our minds.
The neurologist explained to me what the next steps were. He recommended that I voluntarily revoke my drivers licence which I immediately did. He told me that i need to limit alcohol intake and that I should begin taking lamotrigine as soon as possible.
Walking out of the appointment, I was so deflated. I felt like I had taken 100 steps forward to go 1000 steps back. Everything I had got used to over the past 5, nearly 6 years were being thrown aside AGAIN!
I am now 2 weeks into my new diagnosis of epilepsy and still adjusting to my new circumstances. To be honest, I am rather excited for my free disability transport pass to arrive and to live a life hopefully as seizure free as possible.
You know, it is so easy to dwell on the negatives but throughout my health difficulties, I have still managed to complete my degree with honours and be on my way to being a solicitor. I have since the age of 16 had a consistent part time job. I have been on several drinking and non drinking holidays with my friends and had equally as much fun on each one. I have passed my drivers test. I have done so many things that I do not give myself credit for achieving.
Until this post, I have never spoken out about my story but I felt like I should do. I want to show other teenagers and young adults, along with everyone else, that whatever your diagnosis, you can achieve in life. You can do whatever you put your mind to.
Also, I wanted to make those who are afraid to speak out or tell people about their epilepsy that I have never, ever had any negative responses. Everyone has been so supportive. The main response is panic. Panic that they would not know what to do should I have one, but that's nothing a bit of a epilepsy education won't sort out.
I'm not saying that everything is perfect and that sometimes it's not a struggle living with epilepsy but don't let it get you down. We are bigger and better than it and you can still live a full and exciting life.

PS, please don't ever put your fingers into my mouth when I'm having a seizure. I could bite them off 🤣

Sophie Hughes
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