I had a seizure minutes before my final exams at uni

Ellie Armitage, 29, suffered the trauma of an epilepsy seizure right before taking a final exam at uni, throwing her future plans up in the air. Here she shares how she has learnt to cope with having seizures everywhere from her desk at work to in the park at night...

I’ve had epilepsy since I was 10 years old when I had my first seizure in the bath – I had absolutely no idea what was going on, I just felt a weird rising feeling in my tummy, like when you’re on a rollercoaster. Mum came in, took me out of the bath, and said I was acting vacant for a while before I came around and carried on as normal.

It must have been scary for my parents, but we didn’t think too much of it until a few months later when I had a violent seizure where I began shaking and was physically sick. I was taken to hospital and later diagnosed. It was a relief for my parents to at least know what it was and that it could be treated – though trying to get the medication right has always been a challenge.

I've been on one tablet since I was 10 but, when I was 15, doctors introduced another one and the side effects were awful. I lost my appetite and a lot of weight and it triggered an eating disorder. I look back and it’s hard to accept that medication that should've been helping me made another aspect of my health worse.

Embarrassed in public

The seizures were at their worst in my early teens when I would have one every week or two. They varied in intensity, sometimes I was taken to hospital while, other times, I was able to bounce back and carry on. I'd have one and then think, 'Okay, hopefully I’ve got a week off' and I’d relax before getting nervous about another one.

My friends all knew and understood, as did my teachers, but it was embarrassing when it happened. Heat and rising temperatures were often a trigger and I even had one on the netball court in front of a whole host of people. I’d try to say what was going on but I couldn't get words out, so it really did sound like a different language. I remember one of my friends laughing at me because she didn’t understand.

As I got older, it impacted my social life. I’ve never been able to drink alcohol for a start, and I hated my first year at uni. I missed out on freshers' parties. I'd also gone to a small school where there were 30 people in my year, so we were all very close, and then I was at Birmingham Uni on this huge, overwhelming campus. Lack of sleep was also a trigger for seizures, so I couldn't afford to have late nights out having fun.

Stress-induced seizures

But the worst moment was during the final exams for my psychology degree. I was standing outside the examination room feeling nervous and stressed – another trigger – and none of my classmates were with me because they were doing different modules. I began to see flashing lights and felt that familiar rollercoaster rising sensation.

It’s like your body’s pre-warning that you’re about to have a seizure. I usually have about a 20-second window where I'm still aware of what's going on, so I got my phone out and managed to find my mum's number and sent her a text which was probably complete nonsense, but it told her what she needed to know. Luckily her and my dad were on campus as we were planning to go out for lunch afterwards.

I wasn't shaking during this particular seizure so I looked relatively normal, just vacant and staring into space. My parents arrived to see me standing there completely rigid and I really don’t know what would have happened if they hadn’t been there because no one else asked if I was ok, or why I hadn’t gone in to take the exam.

They took control and asked for someone to get us a car to take us to the medical centre. I have no memory of this but I stayed with the doctor for about an hour before my parents took me home where I had an awful headache for days.

Affecting my future

On the drive home it really hit me that I’d missed my exam – and that I still had three more to sit. I'd worked so hard up until that point. I was one of those people always in the library, so it had been my plan to go straight home and revise.

I was so worried – plus I was feeling awful so my head wasn’t in a place to even think straight. What made it worse was that I knew I had a place to start a Masters degree at King's College in London three months later that was dependent on me getting this degree. I felt such panic about that. I was about to start a new chapter in my life but now it was all up in the air, and I had no idea what to do.

I spoke to my supervisor who said, "We'll find a way to help you retake this exam, but for now just focus on the ones you have coming up" – they didn't understand that I wasn't in a place to finish those exams.

I felt really low, so angry and frustrated. I spent the next few days in bed wallowing but my mum has always given me the tough love approach, and I'm grateful for it now. She is my number one supporter and helped me find the determination to get the job done.

A few days later we had a meeting with my head of year to come up with a plan and they arranged for me to do some of the exams at a later date as well as a piece of coursework that was unbelievably hard. So, when everyone else had finished, I was revising and working that whole summer. That was the hardest time. Before the seizure, I'd booked a hotel with my friends for graduation but now I was going to miss celebrating with everyone else.

Moving on

I finally finished my degree in August and I did it – I started at Kings College in September. My friends were amazing and, when I eventually graduated the following January, they all came back to Birmingham for my graduation.

That seizure was my last one for six years. After my masters, I started my career as a business psychologist and, in 2021, met my boyfriend Calvin. I told him I had epilepsy when we first met.

Dating was always really awkward for me because if you don't drink alcohol then people think there's something wrong, so I've always felt the need to justify it. I've had mixed reactions – you see the fear in their eyes – so I was terrified to tell Calvin. But he was really cool about it – and that’s how I knew he was one of the good ones. Plus I hadn’t had a seizure for about four years then.

After the pre-exam seizure, the doctors had increased my medication and then, a year ago, I had an appointment with my consultant. I’d been on a very high dose so he suggested bringing it down gradually over six months.

In hindsight it was reduced too much because, last August, I felt auras, little episodes where you see flashing lights for a few seconds, which can be a warning that a seizure is coming. I think I was in denial so I didn’t pay enough attention and, soon after, I was out for a run on my own in the park one night when a seizure came on out of the blue.

Rushed to hospital

I stopped running and completely froze, then fell over and hit my head on the pavement. I have vague flashbacks of there being a lot of people around me and someone calling the paramedics. My mum happened to call my mobile while the paramedics were with me, who told her that I'd hit my head, was unconscious and they were taking me to St Mary’s, the main London hospital for head trauma. Hearing that, they were terrified.

I had such a headache but I wasn’t really aware of what was going on. Doctors told me I needed a CT scan and I was crying because it sounds so dramatic but I really did think that I was going to die and there was no one with me. Eventually Calvin arrived at the emergency room, saw my face was covered in blood and burst into tears.

The scan showed a haematoma but thankfully it was nothing to worry about and I was able to go home where the next few days were tough. I was aching, had a severe concussion and felt really down and numb. I was only two months into a new job and felt like I’d let them down, plus my parents worried about me and I felt bad this was making them even more anxious.

Living life to the full

It knocked my confidence and affected my independence. It hit me the day after that seizure that I wouldn't be able to drive anymore, so I had to hand back my licence. I work from home a lot and was nervous about being on my own, but also nervous about getting on the tube to work. If I ever did go anywhere, I’d text Calvin and have him and my friends track me on my phone, which was useful but I hated having to do it.

Last December, I was sitting at my desk one morning at home and had another seizure. I could feel myself shaking and sat there and waited for it to pass. Two weeks later, I had another one – a bad one. Calvin came home to find me lying on the floor and called the paramedics who took me to hospital. After this, my consultant changed my medication back to the dose I was on before and, touch wood, I haven’t had a seizure since.

Dealing with epilepsy has definitely boosted my resilience. I've had to make adjustments and I’m lucky to have a good support network around me, but I want to make the most of my life and I’m determined to still do all the things I want to do.

I want to build my confidence back up and get back into running, and I'm going to continue to drive my career – in fact I am playing with the idea of going back to uni to do another Masters. I really want to see the world and have just come back from a holiday in Sri Lanka. There will be ups and downs, but I am not going to let epilepsy define who I am.

Go to Epilepsy.org.uk advice and information.

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