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I had my first seizure when I was 14 years old; I'd never learnt what epilepsy was in the secondary school I attended so it scared me a lot when they kept happening on a daily basis and I couldn't explain what was wrong to my friends when they happened at school or when I was with them in public. I went to my local doctors almost every week and was transferred to a neurologist at Stepping hill a week before I turned 18. I then got transferred from Stepping hill because my case with my seizure confused the neurologist there that thought I was having Partial seizure or having strokes because my seizure only affect the right side of my body and I had an allergic reaction to Cabamazepine, just before being transferred from Stepping Hill to Salford Royal, I had a Tonic Clonic seizure whilst sleeping and woke up with my parents yelling at me to wake up, my oldest sister trying to calm them down as she worked on the CCU at stepping hill at the time; my right arm had gone numb from my elbow to my fingers as well and I was rushed into stepping hills A&E. From there I was transferred within a week to the top neurologist at Salford Royal where in the 4 years of being under his care he tried me on multiple medications, one of which was Lamotrigine which I'm allergic too as well. I had 4 MRI scans, 2 lumbar punctures, a week in hospital being video recorded with EEG scans so he could see what my seizures looked like when I had one and a stay in for another week for a practise run on steroid treatment to see if they lessened the number of seizure I was having, which didn't work for me. When I was 22, I was on tablets that my body rejected instantly to the point where I was out in Manchester shopping with my best friend and I had 80 seizures in Manchester alone and another 43 back at home which was and is the most seizures I'd ever had in a day. Since that day my confidence in myself and not caring that I had epilepsy went out the window for a while because of every weird look I got from people that day. Once the neurologist I was under put me on Clobazam to take when I have a seizure, Zonisamide 25 mg and Levetiracetam 1500mg twice a day for both, my seizure started to get under control. For the last 2 years I've been back under the neurologist I started out with at Stepping hill and have gone up to 7 weeks without a seizure and this month alone (January 2018) where back in like 2013/14 I would've had 40-50 seizure in a month, I've only had 7 in total.
I'm still scared of who I can trust with knowing I'm epileptic, I'm not afraid of it just when I was 19 my cousin committed suicide and a year later a girl I called my best friend bullied me because I took the choice to stop drinking alcohol and to focus on getting my seizures under control which she hated so she called me an 'epileptic freak' worthless, pathetic then told me instead of my cousin I should've committed suicide because a person with epilepsy is just wasting the air people who have died could've lived on. I considered her one of my best friends and I hated myself and epilepsy for 6 months when I spiralled into depression and my other best friend had to drag me out my room to take my medication and to see a therapist. I now only tell people I'm epileptic when I've gotten to know them very well but I'm learning that not everyone is as judgemental as the person I once called my best friend. The people I am now best friends with I've managed to do a lot with in the 2 years I've been on the right medication for me such as a weekend in Rome which was amazing and I also have a one year old nephew who I spend a lot of my time with; my local doctor and both neurologists from Stepping Hill and Salford Royal are to thank for that. I am now working on my goal to be able to get a job in the travel and tourism industry as either a passenger service agent at Manchester airport or as a travel agent as that was my goal when I started college and before I had to put all my attention on making my health the best it could get for me to achieve that.

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Just ready Jenny’s story and can relate to it very well as my son is in the same position as Jenny, and when he read the story it was upsetting for him to think this is happening to other people.

Submitted by Janice on
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