Holly's Story
Holly Wagner explains how her epilepsy has been something of a rollercoaster ride but how she refuses to be defined by her condition.
I was recently asked what it’s like to live with epilepsy. A rather difficult question actually, as how can you explain it in a way that people will properly understand and empathise with? For me, life with epilepsy has been a bit of a rollercoaster, but if you’re willing to stay for the ride, then let me explain…
Experiencing a seizure
I was diagnosed with epilepsy when I was 13 years old after having two tonic-clonic (convulsive) seizures within a few months of each other. Witnessing a seizure can be scary, but actually having one can be much worse.
Most people know (or can at least imagine) what a convulsive seizure looks like, but I can tell you what it actually feels like. I don’t get any warnings before a seizure, so I just seem to blink and the next thing I know, I’m lying in the middle of the floor with paramedics beside me. My body feels so heavy, like lead. I can’t even raise an arm. I’m exhausted and my brain feels foggy.
Most seizures I’ve had have lasted around two minutes, but it usually takes me 10 to 15 minutes to regain full consciousness afterwards, and a further 10 minutes until I can actually stand and walk. Seizures put your body through a lot, so it can take me a week or more to fully recover and most of that time is spent sleeping.
Living with epilepsy as a teenager
Initially, I was put on valproate to control my seizures. Although it seemed to do its job, I hated it. The side effects I experienced included weight issues and depression. It was a really difficult time, as I was dealing with this newly diagnosed condition and had no idea what caused it or my seizures; whether the medication would actually work; and I was also having to adapt to the medication side effects I was experiencing.
I told very few people at school because I was scared that I would get bullied – a rational fear, as I have since heard stories of children being bullied because of their epilepsy.
A few years later, I had a review with my paediatric neurologist. She told me that since I hadn’t had any more seizures, it would be possible for me to slowly come off my medication. I followed her guidance and that was it – I was medication free! I was told my epilepsy was most likely hormonal, as my seizures occurred when I had just become a teenager.
Fast forward a year: it’s a Sunday evening and I’m watching TV. I just seem to blink and suddenly, I’m in the middle of the floor, pillow under my head, paramedic in the room. Although I’m absolutely exhausted and my brain feels foggy, I know what’s happened: I’ve had another seizure. I can’t help it, I burst into tears. To be told I basically don’t have epilepsy anymore; have just over a year go by and then have another random seizure and realise that clearly, I do still have epilepsy, is incredibly disappointing.
This time I was put on levetiracetam and found the main side effect of it for me was tiredness. My research informed me that I should watch my stress levels and sleep quality, as these can be seizure triggers.
Six and a half years later, I’m organising a bake sale at work to raise money for Epilepsy Scotland. Hardly any colleagues knew I had epilepsy because I personally prefer people get to know me as a person first before I tell them I have the condition. I don’t want epilepsy to be the first thing they think of when they think of me. However, I’d decided to be a bit more open about it now - these weren’t school kids I was dealing with anymore!
Unfortunately, whether it was related to the stress of this or not, I ended up having a nocturnal seizure (a seizure in your sleep) during the early hours of the morning, which was incredibly disappointing. Sudden Unexpected Death in Epilepsy (SUDEP) suddenly became a risk, as it’s possible to suffocate during a nocturnal seizure if , for example, you were sleeping on your front. This made me terrified to go to sleep for a while, but I was told about anti-suffocation pillows so got some to help reduce my fear. This seizure also triggered horrendous migraines.
The pursuit of childhood dreams
A few months later, I decided to change careers to acting, a childhood passion of mine. The most demanding thing personally about having epilepsy and pursuing an acting career, is potential long days either on set, stage or in rehearsals.
However, as I love acting so much and want to give myself the best chance, I have slowly been experimenting with different projects and building up my capacity to cope with longer hours to the point where I feel much more confident about it. Sometimes the more you fear something, the bigger a barrier it becomes in your mind. At the end of the day, any role I’ve had or will have, I’d put all my effort into regardless of if I started to get tired due to my medication, and I think that’s what’s important.
So, that summarises my rollercoaster of a ride with epilepsy, but to end on a high: I may have epilepsy, but epilepsy does not have me!
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