Finding control in epilepsy

Being diagnosed with anything is huge. Frontal lobe epilepsy is no different.

Looking back, it’s all a bit of a blur actually. It’s funny really, how our brain manages to put this steel box around tough memories. I am told a lot about this time, and to be honest, I have absolutely zero recollection of most of it. The parts that I do remember I usually keep very close to my chest and rarely out of my mouth; so here we go.

I am twelve years old, and I can hear screams all around me. I am not in my body; the room is black; I have a high frequency sound piercing through my ears and my mind; my thoughts are muffled and almost non-existent, but the screams are very much there—and the fear is unforgettable.

I am now lying in the back of an ambulance. The smell is distinctive—chemicals and disinfectant maybe. My mum is holding my hand, and a nurse is sat on the other side of her. My vision is slightly blurry, but I am aware of my mum being really close to my face, saying my name a number of times until I focus my eyes on her—I can see worry in hers.

I don’t remember much else of the journey, but I do remember an odd taste in my mouth, and when I asked for some water, it didn’t taste much like water at all. I was also given some strawberry flavoured sugar gel—I have a massive sweet tooth, but this stuff was disgusting. It actually had a slight resemblance to the Strawberry and Banana Innocent smoothie—a favourite of mine, which I haven’t been able to drink since.

My body felt weak, and I still did not have a clue what had happened.

I don’t remember arriving in the hospital, whether I walked, or whether I was carried. I must have been there for a few hours, but the first thing I remember was my sister arriving. She found out, left work immediately and jumped on the train to see me. Lying there, not yet having spoken to a doctor, we were left to discuss what had happened, and my mum explained what she had seen.

In the early hours of the morning, she had heard a noise coming from my room—a bit like blinds going up and down apparently. After a few moments of confusion, she opened my door to see where it was coming from. I was having a seizure. When it finished, my mum asked if I knew her name, and I said no. She asked if I knew my name, I said no.

In fact, I couldn’t speak very much at all without sounding like I was three bottles of gin down—this went on for an hour. I don’t remember any of it.

As she was telling me this, I began to recall a few things. I remember waking up with my left hand spasming. This began to spread up my left arm and up my neck, until it took hold over my entire body. My hearing turned into a high-pitched frequency squeal and I tried to call out, but I couldn’t—and if I was calling, I couldn’t hear myself doing it, I could just feel the motion of my mouth tensing. My vision went, and I remember becoming closer to losing consciousness, but in one last attempt to get help, I knocked my glass of water to the floor. Then, this ‘thing’ grew stronger, and it took over my brain until I could not think of anything anymore. It was terrifying. To this day it gives me chills.

The time between then and now, ten years later, is a long old journey. Full of hospital visits, scans, blood tests, medication, new medication, help sites for people going through the same thing, and always looking for the latest revelation that could cure me, there is probably too much for a few more paragraphs—a story for another day, shall we say.

To summarise briefly however, around three months down the line and a number of brain scans later, I was officially diagnosed with Frontal Lobe Epilepsy: ‘A neurological disorder that is characterised by brief, recurring seizures that arise in the frontal lobes of the brain, often while the patient is sleeping.’

It was big news, and we all knew it would mean a big adjustment to my life—all our lives—but at least we knew what we were dealing with and how we could move forward.

I was prescribed Tegretol (Carbamazepine) and was told to take 100mg twice a day and to increase this each week all the way to 1000mg. From day one of taking them, I was completely out of it. The next few months are a complete blur looking back, but I do vividly remember going out for dinner one evening, and feeling as though I was watching over my family. It’s a very bizarre feeling, not feeling yourself. I am someone that almost always has a smile on their face (*cough* you don’t get ‘the girl with the sunniest smile’ award at school for nothing, you know *cough*) but during this time, I felt nothing—other than sleepy. All. The. Time. I would cry—but I didn’t know why, and I would worry the feeling might last forever. That this might be the new me.

Tegretol works by stabilising the electrical activity in the brain and nerves. Your brain and nerve cells communicate through electrical signals, and these then in turn, must be carefully regulated for the brain and nerves to function properly. Tegretol stops electrical signals from building up in the nerve cells in the brain, and also by reducing the release of a neurotransmitter called glutamate.

Once you understand what is going on inside, and what this medication is trying to do, you can begin to understand why you are likely to feel this way. Feeling, or being made to feel, out of character is horrible, but rest assured, my body—and brain—over time got used to it when I stabilised my medication intake. I was still sleepy (to this day,) but my personality started peeking through and I began to think clearly again.

When you aren’t on any form of medication, you take it for granted—I know I did. To be completely fit and healthy, and importantly not putting a foreign ‘thing’ into your body, is wonderful. My upbringing taught me, ‘If you have a headache, you should drink some water, not take some paracetamol.’ I guess it stuck. When I was told that I was going to have to take drugs for probably my entire life, it was a bit of a shock. I was much younger then, so I think it had more of an impact on my family, whereas I almost didn’t think of the long-term effect too much—it was a path to follow to try and stop the seizures from happening.

With the medication, my moods were balanced, I was feeling myself and I was on a stable dose. My trigger points of stress and tiredness set me off sometimes, and I would be asleep for the entire day following, but in general it was working well. The ball was in my court, and I wasn’t going to let this thing beat me.

After being fit-free with Tegretol controlling my seizures for the better part of eight years, they started to come back, and unfortunately pretty aggressively. It started with one every six months, to one every three months, and then three in two weeks. I usually forced myself to get showered and make my normal 7.31am train to get to work (despite once showering in my underwear and looking down, bewildered by the whole affair.) School was different, but I didn’t want to let something like this stand in my way in anything I did—especially not my career!

It was gutting, but it was time to look at changing something and getting these things under control again. The increased frequency also made me less scared of them, but when sleeping alone, I would still have a knot in my stomach and a fear to fall asleep in case they attacked in the night. When I woke up and realised what had happened, I wanted to cry. Every time.

I went back to the neurologist, and discussed medication options. After going through a long list of options, it was decided that Keppra was the next stop. I was to slowly come off Tegretol, and start introducing Keppra. It was exciting—everyone had so much faith, and I was looking forward to taking some control.

Fast forward ten months, we had the mood change bit again which was a tough gig, and I made the decision to have a cocktail of Tegretol and Keppra as that seemed to be controlling them the best. I was hoping to be on just one drug, and off Tegretol; now I’m just happy that it is working for me, my moods are stable—and actually, I am more awake than ever. I might soon lose my ‘nap queen’ title.

I am almost five and a half months fit-free and I am happy—really happy. I am fit, I am healthy, and I am in control. I still have seizures, and they still terrify me the way they did that first time, but my recovery time has reduced significantly. I am no longer asleep for a day, I now can be up and about, in an hour, to go on as I usually would.

I am still always on the hunt for the next ‘cure,’ and when they don’t work, I am disappointed for days—but, the difference is, I am now in control.

I control my life, which allows me to control my condition. I write my feelings down, I use fitness and a healthy diet as a way to influence my body in the way I want to and keep a happy mind.

Being diagnosed with anything is huge. The usual questions of: What now?; What does this mean for me?; How does this change things?; Can I cope with this?; How do I cope with this?; will happen and are natural. They may take some time, and you may feel like it has taken over your life, but you know what? You will figure it out! And remember, you are in control. Whatever is coming your way, you can tackle it—one step at a time. ■

Gemma Mills