I came away from my first neurologist’s appointment with more questions than answers (Picture: Ben Sailsbury) I was 21 and doing some work at university in Liverpool when I passed out on the floor. My friends called paramedics. When I woke up, I had no idea what had happened. That was my first experience of having an epileptic seizure. I wasn’t diagnosed with epilepsy until I had a second seizure a few months later. I wasn’t born with it and I don’t have a family history, so receiving that diagnosis in my early twenties was shocking. It completely changed my life. I came away from my first neurologist’s appointment with more questions than answers. The only two things they could tell me were that my seizures were focal (so they started in one part of my brain and then spread) and that I had some kind of photosensitivity: my seizures are caused by blue light from screens. My neurologist started me on a drug called Lamotrigine, which I had to increase week on week to build up to a target dose. I ended up having more seizures during this time, injuring myself and getting concussions, all while trying to stay on at university, do the work and keep my head above water. I found myself getting angry and impatient, so I went back to the neurologist. He put me onto a much more aggressive medication, called levetiracetam. Through the work I’ve since done with charity Epilepsy Action, I’ve learnt more about levetiracetam. It can be a really effective epilepsy medication as it stops seizures, but the side effects can be really extreme. Ben, right, with dad David, left (Picture: Ben Sailsbury) In my case, levetiracetam took me to a really, really low place mentally. I didn’t want to be awake or speak to anyone; dealing with the world was just too much. And when I was conscious, I had violent mood swings, going from very happy to very, very sad, crying and all the rest of it. I punched a hole through a door in frustration. I developed a tick. The effects of levetiracetam completely changed my personality. Eventually, I decided I’d rather have epileptic seizures than continue on as this completely different person. I not only chose to stop the levetiracetam but to stop taking any epilepsy medication at all – my plan was just to try and not look at screens. The levetiracetam side effects gradually faded, and I wasn’t having seizures. Yet when I went back to my next neurology appointment, my consultant made it clear that the seizure risk was still there and I needed to be on something to prevent me seizing and hurting myself again. For Sarah Sarah Whiteley was a Metro columnist and much-loved member of the team (Picture: Sarah Whiteley) Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk. Sarah died aged 39 from SUDEP - sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy. With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action. From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP. Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory. Finding the right medication can be frustrating with any condition, but particularly with epilepsy. There is no one-size-fits-all drug or dose and levetiracetam is not the only anti-seizure medication that has side effects. Then one drug may stop working for whatever reason so it can be a case of taking additional drugs while phasing the old one out. It can be very tempting to think that it’s not worth taking anything and not wanting to interact with the doctors, just as I did. Yet side effects aside, medication is the most important factor for controlling seizures. Getting on top of it is the number one priority for anyone with epilepsy, and neurologists would say as much. Ultimately, mine is a success story. Medication has now more or less helped to control my condition. Ben, left, with friend Joe, right (Picture: Ben Sailsbury) My neurologist put me back onto Lamotrigine and this time round I was more patient: I waited while my dose increased. By the time I reached my target amount, the drug really helped to control my seizures and I could finally start getting my life back on track. The main battle for me has been to try and regain a bit of my old self-confidence, my self-esteem. I’ve always prided myself on being quite resilient and I derive a lot of self-worth from knowing that I can crack on and be responsible for myself. For a long time I found it difficult to be treated as somebody with a disability, treated with kid gloves, having people pander to me. I’m very lucky to have that support network but at the same time I didn’t feel like quite myself. Epilepsy Action Epilepsy Action supports the 630,000 people with epilepsy every day through their helpline, information, groups and services. The charity’s ambition is to create a world without limits with people with epilepsy. By raising awareness of the condition, too often misunderstood and invisible. By changing the narrative around it, collaborating with healthcare professionals and campaigning for better services. By working to get everyone in the UK to know what epilepsy is and how they can support. You can donate to Epilepsy Action here. For me, the key has been finding the things that fulfil me and make me feel like I’m a little bit in charge. I was able to go back and finish university, and I am now training to be a teacher. I’ve also got back into sport; I used to play rugby to a reasonable standard and thought epilepsy would be the end of that, but I’m playing again. Helping others has also been instrumental. I started a charity in Liverpool called The Merseyside Collective, which facilitates sports events like football tournaments and five-a-side matches to help the mental and physical health of residents in the area. Our proceeds go towards sponsoring local urban regeneration and re-greening projects in Liverpool. I help out with Epilepsy Action too, interacting with other people in support groups, especially men. Men’s mental health is so important anyway, and as much as I try to be responsible for myself, you have to be able to talk about what you’re going through, especially when it comes to epilepsy. Ben, left, with mum Carol after his graduation (Picture: Ben Sailsbury) Men are reticent about talking but being very honest is really, really important. If I need extra support or provision, I don’t let myself feel ashamed of it. I ask for what I need and take up space. Employers are getting increasingly better at accommodating epilepsy although I still have coping mechanisms of my own. Often I’ll jump in my bed and use my non-backlit tablet to read or work; I use blue light glasses to read off a screen and I take breaks every 20 minutes. At work, I try to let people know if something might affect how fast I can get things done, but that’s just the way it is. The period I spent trying to get my epilepsy medication right was one of the darkest of my life. At one point I felt like my neurologists didn’t seem to know anything because there was nothing they could tell me, no new information they could offer. Getting medication sorted takes time but my condition is now more or less under control because of it. I am not completely back to how I once was. I’ll never be able to do certain things – including joining the military, which had previously been my goal – and I do have to be very, very mindful of my lifestyle: I treat sleep like a second medication, it’s just so essential for me. But I am now two-years seizure free and able to drive again, which is a huge hurdle for lots of young people with epilepsy. You can live a really full life with epilepsy, you just have to trust the process. There is light at the end of the tunnel. Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. Share your views in the comments below.