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Faustine’s story – Learning to live with epilepsy



Epilepsy advocate & blogger

- Epilepsy & Memory
- Content Note (CN): epilepsy, memory, higher education and mental health.

Date Published: March 9, 2022

Author: James Matejka

Faustine’s seizures began when she was around 15 years old, but the details of her epilepsy diagnosis are still unclear. Due to epilepsy-related memory loss, despite her best efforts Faustine often found early school life challenging, forgetting what she had learnt in class or taking longer to answer questions than her peers. Faustine is now a university student and in this Research Blog she shares her experience of living with epilepsy, and what she hopes research will achieve for people like her.

How did you find out you had epilepsy? 

Given that this Research Blog is centred on epilepsy and memory, I think it’s important to mention that I have very limited recollection surrounding the time of my diagnosis and most of my seizures. It took a while for me to be diagnosed with epilepsy, and by this time I had already had multiple seizures and seizure-related head injuries from falling. I only really remember how I feel post-tonic-clonic seizure and I think this highlights how much epilepsy can affect your brain and memories of certain events. I had to ask my mum for some help when writing this – she managed to fill in the gaps!

I had my first seizures when I was 15 years old. I ignored them initially as I was a fairly clumsy person and just thought I was a bit ‘twitchy’ in the mornings. I would drop things out of the blue and would get a kind of spasm in my neck and arms, feeling almost like a quick shock, and I had become increasingly ‘day-dreamy’ in school. I was just starting my GCSEs, and until then I had always been an attentive student and enjoyed subjects like Religion, Philosophy and Ethics (RPE) and English. Beginning to struggle with concentration really complicated my school life pre-diagnosis, as teachers couldn’t understand what was causing my inattentiveness.

A few months later I started having myoclonic jerks and then had a tonic-clonic seizure in the corridor outside my history class. I don’t remember much of this seizure apart from carpet burns and bruises from the fall, and some movements while it happened. I was exhausted and slept most of the following day.

What impact has epilepsy-related memory loss had on you?

I noticed a change in my memory after I started experiencing tonic-clonic seizures. It affected me more so in school, where I would often find myself forgetting what I had learnt in lesson and being unable to answer questions at first. I would get overly frustrated when I got the smallest thing wrong, which caused me to withdraw from certain situations and avoid participating or speaking to people.

I also saw a change in my mood, energy levels and alertness. I take a combination of three anti-epileptic drugs which can make me drowsy and nauseous, amongst other things. Juggling the side effects, seizures and a somewhat stressful high academic workload can be a challenge! Struggling to find certain words or taking longer than my peers in situations like supervisions or debates at university can sometimes feel embarrassing, but I try and remind myself that it isn’t my fault and I am doing the best I can despite my epilepsy.

What one thing would be life-changing for you, in terms of your epilepsy?

What would be life-changing for me is if educational establishments and their staff genuinely understood the effects of repeated seizures on the brain and the side effects of seizure medications. There is a lot of awareness surrounding first aid and epilepsy, but nowhere near enough discussion around how it impacts memory and consequently education.

What are your hopes for future research?

Firstly, I would like to thank Epilepsy Research UK for all the remarkable work you do – I remember looking at your website when I was newly diagnosed as a teen. Research is vital!

Fortunately, lots of people with epilepsy can lead long, fulfilling lives with the right treatment and support. The treatments and surgical avenues we have now are thanks to vital research supported by the likes of Epilepsy Research UK, health professionals and other heroes in the epilepsy community.

On a personal level, I would like to see further research into how epilepsy can affect information retention and short- or long-term memory. It has always been something I have struggled with and I would love to be able to understand my brain and body better! I used to worry a lot about my memory loss and was anxious about having to explain this to future employers or universities, but as I have gotten older I have accepted that this is part of my epilepsy and therefore part of me. Essentially, I have learnt to be at peace with it, however frustrating it may be.