As part of National Epilepsy Week, I wanted to open up about my journey with Epilepsy. It all started a few years back when I woke up and suffered from these 'jerk' like moments, which in August 2020 we discovered to be ‘Myoclonic Jerks.' Before this, I never thought anything of them and believed they were shivers and my body just adapting to the temperature as I woke up. So I carried on with life, until on Friday 13th December 2019, everything changed, for good. I was home from University for Christmas and decided to stay up and watch the election on the Thursday night. I didn't end up going to sleep until 6am when my Mum came down for work, and I had agreed to take her to work so she could go out in the evening, which up until this day she would go to work and come home after. As I had not slept, we agreed I would get my head down, and she would come back at lunch, and I would take her then. I received a call at 13:30pm to let me know she was on her way, and like any other day, I got up as usual and jumped in the shower. But I remember I had to borrow my Mum’s iPad. Apart from remembering I done my teeth twice, what happened next, I do not remember.
My Mum ended up receiving calls from me, two, screaming down the phone, telling her I loved her, that I was going to die, and that I was so sorry. She made it home to find me wandering around the house with nothing but a small towel around me, with severe burns to my left foot, right leg, and left hand. I was wrapped in clingfilm and chucked into the car as we lived 5 minutes from our local hospital. Still, no clue what had happened to me; I hopped into A&E and just told them I had severely burnt myself. I was straight into a room and seen to, and I knew immediately it wasn't good, but still, I was smiling and even laughing as my Dad also arrived at the hospital. I was supposed to be going back to work the week after, and I was so excited to return and see everyone again; and to add to the weirdness of the day, my manager at the time walked past the room, and I got my Dad to get her attention. We both knew I wasn't going to be making it back to work. This was going to be a long road back to recovery, and it was.
The burns were so severe that the nurses treating me made calls to Chelsea and Westminster’s Burns Unit, and later that evening, I was transferred there via my parents. Now I was aware and scared. I could even sense my parents were too. I can't fault the Burns team one bit. They have been amazing since day one. I underwent two skin graft operations due to the severity of the burns, with the skin taken from my right thigh first time round and left thigh second time round, as the first lot did not fully take. Back to the Epilepsy side, while staying over many nights at Chelsea and Westminster, I underwent many tests to try and find any abnormalities or something to point to some form of a diagnosis, but everything came back clear. Neurologists from Chelsea and Westminster came up to see me, but again, nothing unusual. It was just put down as a ‘Silent Fit’ and probably due to ‘sleep deprivation’ due to me staying up watching the election results. I am still treating these burns daily, with laser surgery planned for later in the year to help the scarring.
Fast forward to August 2020. I headed down the pub with friends from work on a very hot evening, following a scorching and unusually hot summer’s day and, for the first time ever, thought it would be a good idea to drink spirits all night. It turned out to be one of the worst decisions I have ever made. I was picked up later that evening by my Mum, and I remember hitting my head twice within the car on the journey home, being more than ‘worse for wear,' and I was feeling unbelievably sick as we arrived home. I continued to turn down water as much as my Mum attempted to get me to have some. Many people will know the ‘whirling pit’ caused by excessive alcohol, which wasn't good. I did have some water, but not enough, and with hindsight, as I was extremely dehydrated. I remember waking up at 8am and asking my Mum for more, which she headed downstairs to get but came back up to find me having a seizure. My brother was summoned to start videoing the seizure as my mother knew the medics would need the proof to show any neurologist etc. I was once again taken to our local hospital, where my bloods were taken, and I was found to be severely dehydrated, and I was put on a drip. It was not fun, and I knew this was serious. It was obviously during the pandemic too, so I was on my own. The Nurses gave me information about seizures, and the one part that stood out was my driving license.
I contacted the DVLA the next day and had an immediate response, with my license revoked for a whole year, even though this was my only real documented and medically diagnosed epileptic seizure. This was devastating considering there was no other evidence of episodes within the previous 8-month timeframe. At the time of writing this, I am four weeks away from being able to re-apply for my license, and I cannot wait. It was so tough to take at first, with my freedom essentially being taken away. However, I couldn't complain, I just had to get on with it, and I understood the reasons for this entirely. The dangers to other road users were too serious while I was not on any medication. If this has happened to you recently, the time has flown by since, and I have accepted this as gracefully as I could as I knew why this was necessary.
Due to being registered at University, when the silent fit happened in December 2019, I was referred to the Neurology Department closest to me there. Still, I had only heard from them once, and it was not a positive experience. I was made to feel like it was all my fault. Thanks to an excellent family friend who was an RGN Nurse and who was also diagnosed with Epilepsy at a similar age and had a very similar medical history to mine, she was able to help me. She advised us to insist on another hospital referral to a different Neurology department, who have been excellent and made me feel so comfortable. Due to the Covid-19 pandemic, it was a telephone call. I sat with Mum and went through with the Neurologist what had happened over these past few years, and this is where I finally learned, I suffer from 'Juvenile Myoclonic Epilepsy.' It was scary, but deep down, I was so glad we finally had a diagnosis, although it felt like too little too late, that I had been diagnosed. I am now on medication, taking 1000mg of Epilim per day (2 x 500mg tablets – one in the morning one in the evening).
Despite everything, I made it back to University three months after my severe burns, and luckily I had time to heal as it was the Christmas holidays from University. I was determined to get back even though my foot was not properly healed. I had to learn how to walk again, gradually putting weight back onto my left foot, but it was vital for me to get back to some normality. Luckily the primary 2nd seizure was during the summer holidays of my 1st year, so again I had time to recover and return.
I returned to University in September to begin my Second Year. Still, I was fortunate to learn I was not the only student who has Epilepsy. I was able to speak to these people and find out what it is like, especially in terms of still living the student life and experiencing the whole 'student experience' while aware of the dangers and limitations this does have. I try to obey all the rules, but it does not stop me from having fun and a good time. The consequences of myself ignoring the rules entirely and being stupid (even by accident) could be huge for me, and I do not want that again.
I am lucky to have some great friends and family around me at University and at home who understand what I have been through and who continue to support me and are aware of the dangers I face.
For me and anyone reading this, Epilepsy is not the end of life as you know it. But, like other illnesses, you have to embrace it and accept it for what it is, understand it, and hope maybe one day in the future, as many other illnesses and diseases, there will be a 'cure.'
By total coincidence, six years ago, my 1st cousin started suffering ‘night-time Tonic Clonic’ (Grand Mal Seizures). Due to there being Epilepsy in my Uncle's family, we had no reason to think that there was any epilepsy on our side of the family. However, wind forward to where we are now, and it does seem to have blamed initially one side of the family was probably incorrect. Therefore, there must be a genetic link to Epilepsy to a relative in my mother's family. This would then explain why both myself and my cousin have now been diagnosed with Epilepsy.
If I were to pass on any advice to anyone through my experience, it would be don't ignore any odd unexplained 'hand jerks' as I have subsequently learned (my family and I so wish we had been warned/told this). These jerks are 'myoclonic jerks' and are a warning/big red flag of an imminent Seizure. I had been experiencing these since starting University in September 2019, and it was not until I suffered my first 'attack' and suffered my terrible burns that the seizures showed themselves. Interestingly the day before my burns, I had fallen from the attic ladder and banged my head on the bathroom floor. I am almost sure that this also triggered this first incident. The advice I was subsequently given was if you do suffer any sort of myoclonic jerks, you must sit quietly at home that day and do not give the seizure a chance to happen. My myoclonic jerks stopped as soon as I was put onto the anti-convulsant 'Epilim Chrono,' one of the latest and best epilepsy drugs currently on the market. Now waking up without these occurring has freed me from the worry, so if you think this is maybe you, please do not ignore them and please see a GP urgently. I would not want anyone to suffer like I have the last few years. Had I had known what they were and sought medical help and been started on Anti-Convulsants when these jerks began, the previous few years would have been very different.
My seizures are caused by two triggers which are sleep deprivation and excessive alcohol. Again, I have learned that seizures will occur within 12-18 hours of drinking. I wish that this had been made very clear to me after my burns. I was a student, and everyone knows students at that point partied hard. This was pre-Covid! Why was I not warned? This should have been drummed into me, and it wasn’t, and I have paid the ultimate price and consequence.
I hope my story and experience will help others and gives hope to anyone who has just been diagnosed or is struggling with the diagnosis.
Thank you for allowing me to tell my story.