Hi, my name is Angela, I am now 22 years old and this is my story....
I first started having seizures as a baby for two years. I had really bad febrile convulsions. I did all the exams but the doctors didn't find anything, in fact they told my parents that I was making myself have them for attention.
After those two years I didn't have anymore seizures until I was 18.
I had just started my first year of Uni. I had moved away from home and I used to come visit. So on the 20th of November 2017, I came home for my baby brother's birthday. I ended up sharing the bedroom with him, until he started crying through most of the night, therefore I hadn't slept much.
On the next day, me and my then boyfriend went to the cinema to watch Justice League. But like many other times, when I didn't sleep properly, my legs and arms started to twitch and I would usually go to sleep, so I did. During my sleep, I had a tonic clonic seizure. I wasn't aware this had happened but all I remember was waking up with a paramedic in front of me, asking me questions to see if I had come back yet. I couldn't talk, my body was aching and my tongue really hurt. They took me to hospital with this being my first seizure.
After this first seizure, it took me two months to actually go to the doctors and tell them what had happened and from that a series of test had been done. It took them roughly a year to diagnose me with Idiopathic Primary Generalised Epilepsy. By February 2019 I was on my first medication - Lamotrigine. I had started to suffer from memory loss. Soon after, I had changed medications and I started to take Levetiracetam, which I didn't get along with.
2018/2019 were very difficult years for me. I was in absolute denial of my condition. Continuously, putting myself in situations that could cause me to have seizure. I just wanted to keep living the normal-ish life that I had. I still took my medication as prescribed but I kept going out to clubs and getting drunk, didn't care if I slept or ate properly. Until Mother's day in 2019 came and I had a really bad tonic clonic seizure. This time I had bitten part of my tongue off and I had to be in bed rest for two weeks, only on fluids and loads of baby food.
After that, I started taking better care of myself, started taking Sodium Valproate for about a year. It was the only medication that I had tolerated better than the other two, but I still had side effects, like hallucinations and my behaviour was changing. So in October 2020, my Neurologist put me back on Lamotrigine.
Since being put back on Lamotrigine, I have been having a much worse reaction than I did the first time round. My hair is falling out, my memory is getting worse by the day. I ended up dropping out of PGCE course due to seizure activity starting again. But here I am now, 2021.
I am still trying to change medication, again. But I am still fighting, even when there are days that I am really tired, but I am still trying.
I am at the moment working a part-time job, but its closed due the pandemic. Planning to start a new career in helping others.
I always like to think that if I can do it, that gives more opportunities for people like me to make it.
Things that did help:
-There is this book called "Coping with Epilepsy" by Pamela M. Crawford. It really help explain how to life with it, what are seizure, types of seizures, medications....etc.
- Supportive people (is a must), no one should have to go through this journey alone.
- Knowing your rights, I have seen many jobs, placements, universities neglecting me because of my condition. Job opportunities I missed because of it. Being fired because I couldn't make my shift because of my Epilepsy. There are laws protecting people with disabilities and we have to be ready to use them at any point.