My Experience with Epilepsy
Kyle discusses his recent epilepsy diagnosis, and how it has affected his relationship with himself, and those close to him
*TW - this blog contains discussion of epilepsy, seizures, and fatal injury
I was diagnosed with epilepsy at the start of 2023, after having had two seizures at the end of 2022. I’m not an expert and I’m very much still trying to learn about what it means, how it affects me, and what I can do to try and maintain a happy and healthy balance in what I do. I’m now 25 years old, I have a relatively rich social life, and I pride myself with my career and I’m an avid motorsport and motoring follower - my life so far has been geared to cars, motoring and having deep relationships with friends, family and the sense of ‘success’ or ‘fulfilment’ as a professional.
Epilepsy (from what I am loosely aware of) involves bursts of electrical energy in your brain, which can then cause a number of different ‘seizures’. I experience (or previously experienced) both ‘focal’ seizures, as well as the typically well-known ‘tonic-clonic’ seizures, which involves loss of consciousness, followed by often violent convulsive fits. The former is hard to explain and often isn’t visible or noticeable to people around you, but involves (as the NHS term it) - “…a general strange feeling that’s hard to describe…” - as well as a rising feeling in your stomach, nausea, and a sense of deja-vu, amongst other symptoms which vary from person to person. Normally, this is considered as an ‘aura’ or warning that a full ‘tonic-clonic’ seizure it’s on its way, which in itself is a scary thought or realisation. There are other types of seizure, which so far I haven’t experienced.
My first seizure (which was a fully fledged fit) was on a plane coming back from a holiday - my partner and her sister were with me at the time. I don’t remember anything - the only things I remember were being told by the pilots that we were coming in to land into Gatwick airport, and the next thing I remember is being on the floor of the plane’s central corridor, surrounded by paramedics, having no idea what had happened and with a headache, fear, and a completely blank memory. I was also exhausted, confused and scared of what had happened, having landed at the airport. I was told that I had had a fit, and that the plane’s stewards had had to restrain me on the floor as we were landing.
My second seizure followed exactly two months (to the day) after my first, and this was whilst I was asleep at my partner’s family home in the countryside, just before New Year’s Eve. All I remember was waking up, with the bedroom lights on and my partner’s father walking in and out of our bedroom on the phone. I knew something had happened, but was very confused and apparently telling my partner that I just wanted to go back to sleep - probably not fully appreciating what was going on and just thinking it was time to go back to sleep. It appeared the same type of seizure had happened again, and that it wasn’t a ‘one-off’ or random occurrence.
With some tests done to rule out any immediate issues, I was lucky to be seen by a recommended neurologist in London a week or so later who diagnosed me with epilepsy. I was prescribed two medications to stop both the ‘focal’ seizures as well as the ‘full’ seizures which cause fits.
Since then, I’ve struggled in a few different ways - the first was having to acknowledge that I, as a young person, am neither ‘bullet-proof’ nor immune to health issues, and that I need to pay more attention to my lifestyle and need to concentrate more on taking care of myself.
Another big part of my newly adopted epilepsy was the fact that I had to surrender my driving licence to the DVLA - a ticket which I’d previously taken for granted and a ticket for freedom which I’d now have to give up for a time. This has had (and still has, a few months from being able to drive again) a considerable detrimental effect on my sense of freedom, self-assurance, and identity, in a sense and being that motoring is my most cherished pastime or interest. I’ve felt trapped and that I’m worthless in a sense because I can’t enjoy the thing that I have most loved so far in my life. I started racing go karts when I was 7 years old, I have worked in the motorsport/motor racing industry all my life, and my hopes of owning my ‘dream car’ fell from around me.
This, I’m told, is temporary and that medication is very effective for people with the kind of ‘mild’ epilepsy I’m told I have - and that the vast majority of people never have a full-blown seizure again. However temporary and however much assurance I get, though, it still hangs over me and frightens me that at any point in time, I could collapse and go back to square-one. Forgetting the driving and lifestyle and everything - most for my health and wellbeing it could all happen again. I know there are more dangerous and scarier conditions to live with, but I can’t escape the reality that this will be at my heels for the rest of my life - and all it could take is a bit too much stress at work - stress brought on by a family issue, or a missed pill, or just bad fortune.
I haven’t felt myself since being told about the risks and considerations of epilepsy, and the leaving in fear of things getting worse - not just for me, but for my friends and family.
I feel that the only thing more disturbing about experiencing a convulsive seizure must be to have to witness one. This has affected my confidence, feeling of self-worth, and makes me feel like a burden to my partner and family for not being ‘well’ and ‘healthy’ where I feel I should be. I feel as though I’ve had something taken away from me and I think I feel punished, which I think naturally makes me feel resentful.
The medication I take has side effects, most notably fatigue and irritability. There’s a degree of interpretation around this, but I genuinely feel that these two (of many ‘possible’ side effects) are the ones which I am feeling, which doesn’t help in maintaining a positive social life, as well as close personal relationships. My partner is a fantastic person, but I feel bad about having a shorter tether and for being more snappy. I feel guilty for not emulating a care-free young man I was a few years ago, and I blame myself for things which maybe I shouldn’t.
There are more than half a million people living in the UK with epilepsy, and 1 in 1,000 people with epilepsy in the UK are at risk of ‘Sudden Unexpected Death in Epilepsy’, or ‘SUDEP’. This is largely not well understood by medical professionals, and involves an otherwise wholly unexplainable death either during or after someone has an epileptic seizure, and this does not include people dying as a result of an injury induced by a seizure, for falling down the stairs and sustaining a fatal head injury - SUDEP is separate, non-explainable (as of 2023) and does not involve secondary injuries.
My neurologist told me the 1 in 1,000 statistic and this stood out to me and has been on my mind ever since. There is no immediate link to family history and epilepsy, however the condition particular frightens me, as I’m sure it does for everyone. The thing which scares me most about epilepsy is how it presents, and what it can do to your sense of self, and sense of wellbeing. I have met others with epilepsy who have taken the right medication and been stable for some time - and then have a sudden seizure which appears to have come out of nowhere and it’s square one all over again. That living in fear or living in a shadow of uncertainty is what has affected me most, and that unknown is what I’ve found the most unsettling. I have an Irish cousin whose father had severe epilepsy, and had a number of convulsive seizures a day, and was heavily medicated to try and manage his epilepsy and its symptoms. In the last few years, my cousin found him dead in their home in Ireland, it being clear that they couldn’t tolerate the symptoms anymore.
Whilst my symptoms don’t hold a candle to most people’s experience of epilepsy, I live in the uncertainty of what may happen next. I try and sleep more, avoid triggers, and manage my life in a more balanced way, however this surprise in my life has left me with more than occasional doctor’s appointments and ‘being careful’. It’s affected my mind much more than I realised at the start, and I’ll likely never know what’s around the corner.
Hi, I'm Kyle and I recently turned 25. I'm a motoring aficionado, and I have a love motorsport which I've had since I was a small child.
I've recently been diagnosed with epilepsy and spend my time working in health and safety, working in motorsport part time, and spending time with my partner, Charlotte, and cavalier spaniel, Dougal.