When people think of epilepsy or seizures, most would automatically imagine convulsions caused by flashing lights, or that epilepsy is an obvious disability and simple in nature. But because of my experiences throughout the past four years I know that epilepsy is a lot more than that; it is an unimaginably and infinitely complex subject. I have epilepsy; more specifically I have what is classed as ‘Acquired Epilepsy’. I wasn’t born with epilepsy and it didn’t just happen, something else caused it. The journey I am on has taught me that epilepsy isn’t just the seizures, hospital trips and medications, it’s also bad memory, poor attention span, fatigue, bad memory, the list goes on.
I am now in my 3rd year of computer science at Swansea University and along the way I’ve earned up some good grades, built lifelong friendships and even developed epilepsy. My history with epilepsy started shortly after I moved into student halls on September 19th, 2014.
My first experience with seizures was an intense experience of Déjà vu in the middle of October. It was surreal at first and I thought nothing of it, so I put it down to the stress of living away from home and starting university. Gradually, over time I began to experience more of these sessions of Déjà vu, each one more intense than the last. I began calling these sessions of Déjà vu ‘Episodes’, since I had never heard of anything like this before.
The ‘Episodes’ continued to increase in severity to the point where I would feel disoriented, nauseous and confused; on especially nasty ‘Episodes’ I would vomit. I couldn’t do anything to stop them, I knew that stress and anxiety had a part to play but I couldn’t do much about that so, foolishly, I continued to ignore the ‘Episodes’.
A while after, I was packing the car for a weekend away when I had another ‘Episode’, however, this time I knew that something worse was coming. My field of vision deteriorated and I started losing control of my head and arms. I was on autopilot at this point – to get into the house and on to the floor. I only remember patches of my journey from the driveway to my bed and from my bed to the hospital, but I won’t forget the convulsions I suffered nor the sense of panic I felt. This is where I finally saw a medical professional, because, luckily, I was at my family home where my sister had called the emergency services and two burly paramedics soon arrived to take me into hospital.
Doctors and nurses performed numerous tests to try and find out what had happened. Thankfully, my wonderful Mum was working at the hospital at the time, so she met me in A&E and together we told the doctors and nurses about my health history. Nothing seemed out of the ordinary, but I was still referred to a neurologist. The neurologist seemed baffled at what I had to say, there was no cause for concern apart from these ‘Episodes’. I was worried and anxious about the situation and I hadn’t been given any answers, only an appointment for an MRI scan.
Before the scan, I was prescribed Keppra to control my seizures; this drug is commonly given at a first instance and at the time it worked well for me. Even though I was given an anti-epileptic drug (AED), I still wasn’t completely clear from my symptoms or seizures. Thinking that this turbulent time had blown over, I happily accepted this solution and continued as normal, for two weeks.
Looking back now, I realise I should have expected something significant from my MRI, but I was naïve enough to shrug and think that it would be fine. I didn’t realise how long it takes to receive a conclusion about a scan, nor what to expect. The results came quickly; they told us that I had a golf ball-sized mass in the right side of my brain which was the cause of my epilepsy.
I had my first operation on August 20th, 2015. They removed a large part of the mass, but they couldn’t remove it all as it would be too much to do in too short an amount of time. The biopsy results told us that the mass was a grade 2 astrocytoma, the grade meant that it wasn’t malignant so that was good.
After another operation two months later, I was told that I would have regular scans every 6 months to monitor the size of what remained of the tumour. My ‘Episodes’ still occurred and remained a mystery. Now that things had calmed down, I had been put in the care of an epilepsy specialist nurse. I had frequent appointments until my seizures had settled down. Firstly, we discussed the types of seizures I was experiencing; my ‘Episodes’ are known as complex partial seizures. These seizures only affect a small part of the brain, in my case they affect my right temporal lobe as this is where the tumour has caused damage. The right temporal lobe is partly responsible for memory, therefore I would experience sensations of Déjà vu. The seizure I experienced that took me to hospital was a secondary generalised tonic-clonic seizure; the ‘generalised’ part means that the seizure affects the entire brain which is why people often lose consciousness and convulse.
Seeing a specialist nurse meant that I could have regular appointments and discuss how my seizures have been, meaning that I could be prescribed the types and dosages of medications that would work best for me. This is a delicate and lengthy process as any sudden or incorrect changes could cause seizures. It’s a chemical and neurological balancing act as different types of medication are introduced and taken away. Dosages are increased and decreased all while trying to work out ‘triggers’ and other things that could set off my seizures.
The medication used to prevent seizures has a plethora of side effects which, to this day, I am still trying to deal with. Keppra is known to cause dramatic mood swings, Lamictal causes vivid and weird dreams and Clobazam makes people extremely tired. Those are the main side effects that I experience day in day out.
This is my epilepsy journey which started over 4 years ago. For some people it starts from when they are born or sometime after many, many years; it always varies. My journey continues with frequent medication and lifestyle changes; my seizures are still as stubborn as I am!
By Nicholas Cumplido
