The first thing that happens is a feeling of déjà vu.

I get tingling sensations throughout my body, and it feels like I am slowly being mentally separated from it.

This feeling is also called an aura – and it is one of the first signs that I am about to have a focal epileptic seizure.

Next, it feels like a large wave is washing over me and pushing me down into an underwater cave. At this point, I am aware that a seizure is about to occur but there is such a small window of time before its onset that I have rarely been able to notify anyone.

Instead, I often freeze or let my body enter an autopilot state.

I am still physically conscious when I enter the seizure but mentally I am absent, and I cannot make sense of or respond to anything around me. My eyes are wide open, but my vision is blurred, as though my glasses have been washed off, and all noise becomes merged or silenced.

For Sarah

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.

From here, the seizure transforms into what I call a ‘hallucinogenic’ nightmare, as though I am trapped in that cave and have all my worst fears presented to me. When in this state my right arm and neck often shake and I start to sweat profusely, almost as though my body is trying to respond to what it thinks it is seeing.

This usually goes on for at least two minutes.

To a stranger my seizures would often go unnoticed – I have been told countless times that I look as though I am daydreaming. It is only those who I am close with (family, fiancé and friends) that know when I am having one.

When coming around, I feel exhausted and dazed, as though I have just run a marathon; I struggle to focus on anything and I am unable to speak – almost like a cable has been cut between my brain and voice box, and my body is trying to reassociate itself with my mind.

These sensations can last for up to an hour and consequently, I often have to sleep to recover.

I was diagnosed with temporal lobe focal epilepsy in the summer of 2016, when I was 19. I had just completed my A-levels and had been granted a place at university for a degree in veterinary medicine, as well as my provisional license to start learning to drive.

I first began noticing these ‘hallucinations’ in early 2015 – I cannot remember when I had my first one, but I distinctly recall having them during daily activities, mostly when exercising.

Then in December 2015, I had an MRI scan prior to a planned ear operation that revealed I had an atrioventricular malformation (AVM) in my left temporal lobe – but there was no mention of it being linked to epilepsy until I was referred to neurology.

My referral led to more scans and neurology consultations, where it was explained to me that my daily ‘hallucinations’ were in fact focal epileptic seizures, and that they likely stemmed from my AVM.

This came as quite a surprise – and a huge learning curve. I had only heard of tonic-clonic seizures (where people stiffen, fall the floor and shake) and knew nothing of focal seizures, despite the fact I’d been having them on a daily basis since earlier that year.

The most challenging aspect of my diagnosis was that all of what I had worked so hard to achieve, such as attending university to study veterinary medicine, came to a grinding halt. I felt angry and scared that my independence and lifelong dream of becoming a veterinary surgeon were being taken away from me.

Even after taking a gap year to try to get my seizures under control with anti-epileptic medication, I was prevented from starting the veterinary degree on medical grounds.

It took me a few years to accept my epilepsy diagnosis, but I eventually decided to return to biological sciences, completing a degree in it at a different university and specialising in animal biology and conservation.

It was during my degree program and the course of the pandemic that I began to fully accept my condition for what it was. I had finally found something I had a passion for and a supportive network of friends and family.

I also managed to get a pinch of my independence back.

But my inability to drive has hindered me most – I have to consider public transport routes or rely on other people when making plans or getting to work. It’s not easy for me to go where I want, when I want to.

Over time, I built the confidence to be able to go out on my own – whether it’s to walk the dog, pop to the local shop or out into the city, knowing I am unlikely to have a seizure.

It was during this time I met my fiancé who helped me maintain a positive outlook on life.

He also encouraged me to go forward with gamma knife radiotherapy to help treat my AVM. The treatment was put forward to me in 2021 as an option to remove the AVM with the ultimate aim of reducing my heightened risk of a stroke.

Roll forward to the present day and, having undertaken only one treatment of gamma knife radiotherapy in September 2022, I now not only have no AVM, but I also have the stroke risk of a normal human-being.

I continue to take medication intended to treat focal epilepsy – but it’s been a tedious process. Since my diagnosis, I have tried over five different anti-epileptic medications and after going back and forth with my neurology team, I was able to finally settle on my current medication and their doses at the start of 2024.

Earlier doses didn’t completely stop my seizures and came with a whole host of uninvited side effects, including depression, fatigue and memory loss.

At first I struggled to carry out daily tasks as simple as getting out of bed or brushing my teeth.

But while the drugs still affect me now, I have strategies in place to help reduce their impact, such as setting small daily goals, journaling feelings and taking photos of moments I wish to remember.

With the gamma knife radiotherapy and correct medication, I am now one-year seizure free, which means I have many exciting prospects for my life going forward, such as starting a family with my fiancé.

Having epilepsy has had many positive impacts on my life. It has taught me resilience, patience and perseverance.

Since diagnosis, I have solo travelled to multiple countries, volunteered in research and conservation projects, hiked many mountains, graduated with a first in biology and so much more.

It all required additional precautions – medical insurance, seeking help or advice where needed – but I have learnt that having a disability does not stop you from achieving great things, so long as you set your mind to it and surround yourself with those who will cheer you on.

My condition can feel quite lonely as the majority of people don’t know of or understand focal epilepsy and the seizures it presents – they are much more subtle than tonic-clonic seizures and not as readily identifiable.

The dramatic way epilepsy is presented in the television and media also means there is also a lot of fear and stigma. I wish people knew more about the variety of forms of epilepsy and the types of seizures, alongside a better understanding of the side effects that can come with them.

Seizures are, in my opinion, only 10% of what it is to have epilepsy. The side effects of medication and seizures, and loss of independence, make up the remaining 90%. You have to shape how you live around your diagnosis.

Going forward, I hope that I continue to remain seizure-free and continue regaining some of the independence I lost – I am hoping I can return to my root desire to be in the veterinary field by progressing into a career in veterinary nursing.

I know I shall continue to face challenges, especially with the side effects of my anti-epileptic medication.

However, I know that with perseverance and patience, I can achieve what I plan to, and they are just small hurdles I have to jump to get to my end goal.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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