Running through the unexpected: Ultrarunning and epilepsy

Life isn’t without its surprises – good and bad. I haven’t published a post on here for over a month due to something unexpected that happened back at the start of June. One of those ‘big’ health events, it’s got me thinking about what it means for the things I love, including ultrarunning. Together with a fellow runner (Giacomo Squintani), I’ve put this blog together to try to gather what I’ve learnt so far. Strap in: it’s long but (hopefully) a good’un…

A rude awakening

On 2^nd June at 3.59am my wife awoke to find me lying on my front and struggling to breathe. She dialled 999 and the ambulance crew arrived within 10 minutes and instantly recognised that it was a seizure rather than a heart attack. After 30 minutes of unconsciousness, I came round unable to remember the date, the month or the name of the UK prime minister. Thankfully I did, however, recognise my wife and kids, and I did manage to smile at them before heading back into a coma-like paralysis for 20 minutes. My wife was terrified; amazingly, my daughter less so – she’d seen someone having a seizure last summer so knew what was happening.

The ambulance crew and hospital team were absolutely terrific and, after a morning of scans and tests (CAT, Brain, MRI, ECG), I was diagnosed with Hydrocephalus (too much fluid on the brain, triggering seizures). The good news was there was no sign of a tumour and no sign of bleeding so the current assumption is that the unwanted fluid is the result of a previous head trauma.

Finding new heroes

I was left contemplating what life would look like. The consultants told me that I needed to be seizure-free before I would be able to reapply for my driver’s licence, and to avoid ladders, swimming solo, and anything that would put myself or others at risk. Being an ultrarunner and into a run streak, I naturally wanted to know what my diagnosis would mean for that. In the hospital bed, I googled running with epilepsy and found a Runner’s World article about Diana van Deren, called ‘Fixing Diana’s brain’. Her story is incredible; after years of epileptic fits, she had surgery to remove part of her temporal lobe. It’s left her with some serious effects, but has also seemingly made her a formidable ultrarunner with a different sense of pain.

Diana – and others’ – stories gave me hope that I had a future that involved running. I checked it out with the consultant, who agreed that ultrarunning would work for me thanks to its general low intensity as a relatively low heart rate activity (I didn’t share some of my less clever efforts with him from Strava!) After talking to a nurse, I ran on the spot on the ward for 30 minutes, clocking 1.24 miles in treadmill mode on my Suunto. After such a stressful and unsettling day, it came as a real release to know that I could keep my run streak (day 175!), stick to a routine that I hold important, and have some control over my body.

The Epilepsy Society reckon that some 60 million people have epilepsy globally, with roughly one in 100 UK adults affected. So I knew I must be far from alone as a runner dealing with an epilepsy-related diagnosis. In fact, I already knew someone. I contacted my friend Giacomo Squintani when I got home. An extraordinary runner, Gia runs parkruns, marathons and ultras – and holds the Hell on the Humber 36-hour male record. He’d already heard that I’d joined two clubs of which he’s been a long-time member: the runstreaker club, and the epileptics club. They’re two very different clubs but, as Gia was quick to point out, many would argue that members of both are not right in the head…

Running and epilepsy – thoughts from Giacomo

I was fascinated to ask Gia about his experiences. He wrote the following reflections, which are personal to him and for which I’m really grateful that he’s sharing with this blog. We both hope that they are useful to anyone who is newly diagnosed, or a long-term epilepsy sufferer thinking about running…

A couple of caveats

1. No two epilepsy sufferers are the same. It’s one reason the disease has such a low profile when you consider that are over half a million of us in the UK alone. We’re an invisible army. This does mean that what works for one person may or may not work for another: I’ll always share my experiences, but cannot guarantee they’ll resonate.

2. Self-deprecation has helped me cope with epilepsy more than any of the dozens of meds I’ve tried over the years. Although the cocktail I’m currently on (Keppra, Vimpat and Phenobarbitone) seems to be working quite well. Just forgive me if I appear to be taking the condition lightly: I never do. It’s a coping mechanism, pure and simple.

3. I’ve never witnessed anyone have a seizure. It’s a scary sight. One through which I’ve put through relatives, colleagues, team mates, friends… but which I’ve never witnessed first-hand. Hence my referring to it as a “selfish condition”, as, by its nature, I’m unaware of what’s going on when it does hit me – unlike everybody else.

Now, zooming in on how I manage my dual relationship with running and epilepsy…

Firstly, but for my epilepsy surgery and the ensuing weight gain during convalescence on top (literally) of what was already an ugly sight, I may never have taken up running. I began purely to lose weight. I just forgot to stop.

For context: most of my seizures are mild. I’ve only had one in the past three years: that was last September (it’s on my running spreadsheet…), within days of me completing a three-month dosage reduction process and coming off one of my three meds. I’d long wondered whether I needed to be on three meds, and my consultant and I agreed to try to discontinue one of them. I was back on it within days and have been seizure-free since. My first one was my worst one, as I ended up in a coma aged sixteen months, but growing up I’d have less than one a year, and was seizure-free between the ages of 17 and 27. Then they came back, and my consultant rushed me off my lifetime friend called Phenobarbitone, once the default anti-epilepsy med which now gets a bad press. For years I wandered from drug to drug, but might still have four seizures in any given a year. Many people would settle for four in a day; for me, that was a lot. I underwent surgery on 22/11/2011, with my criteria for success being becoming seizure-free. I’ve had seizures since, so, unlike my consultant, I consider the surgery unsuccessful. But they have been milder and rarer… indeed, I’m usually OK-ish within an hour of coming round, even if it might take me a day or two to be 100%.

The worst incidents have been those where I’ve fallen and banged my head: Barcelona 2010 stands out. Those white hotel sheets looked like Sheffield United shirts shortly after my head had got too closely acquainted with the bath after I passed out whilst standing in front of the sink…

I’ve had eight seizures whilst, or immediately after, running. Six of those eight were during races: Manchester Marathon 2014 (around mile 20), Clevedon 10k 2015 (during) and 2016 (minutes after crossing the line for my first – and last – sub-40), Towpath Mob Match 10k 2016 (the week after my PB in Clevedon, even though I’d told the Portishead R.C. captain I would only make up the numbers and not race competitively), Nice-Cannes Marathon 2016 (minutes after crossing the line for my first sub-3) and 401 Challenge HM 2017 (all the local quickies were running Severn Bridge HM, so I thought I’d have a shot at first V40 – only to collapse three miles in…).

A seventh was at a parkrun, which obviously isn’t a race but where I was after a PB; and then there’s one in Prague, when I was over there for work. All in the morning bar the three during or after 10ks. Which is why I no longer run 10ks: I don’t know whether it’s the intensity (but since Clevedon 2016 I’ve clocked five sub-3 marathons, at a not too dissimilar pace held over an extra twenty miles), the time of day, the nutrition… but, when the St John’s Ambulance staff start recognising you, it’s time to call it a day. Or a night.

You will no doubt have noticed that the one event over which I’ve never suffered a seizure are ultras. It was a hot August Sunday when I had my last mid-race seizure, in Portishead: I thought I’d have a shot at first-in-category and put myself over undue pressure, which, combined with the intensity of the pace, probably messed with my brain. It certainly shot up my heart rate. Whereas Ultras, with their low demands on HR and their more relaxed nature, have always agreed with me. Well, almost always… I did almost conk out somewhere along the South Downs in 2018… but I remained conscious enough to know I wasn’t right, and that my last daily set of meds (Phenobarbitone) was causing dizziness. I knew I wasn’t running straight, I just couldn’t do anything about it but grind it out. Having a runner who’d never previously seen me accompany me and then spend longer than I normally would at a checkpoint (Housedean) helped, though still volunteers there were surprised and relieved to discover I’d finished…

Have I ever considered giving up running? No.
Have I ever considered giving up racing? Yes.

Chester Marathon 2014 was my first race since passing out at Manchester six months earlier. I made it quite clear that, if there were a repeat performance, I’d not race again. Because it would have established a clear link between racing and fits. A far clearer one than between running and fits. Indeed, I had several seizures during my tennis-playing days: all during League or Club Championship matches, never in any of the hundreds of social sessions in which I played… and my one mid-run, but not mid-race, seizure came on a day when work pressure was higher than usual…

I also felt unsure about racing after my August 2017 seizure at the 401 HM in Portishead. So, the next Saturday I grabbed a lift to Burnham for parkrun then ran home. I needed to be sure that I could enjoy running miles and miles just for the sheer sake of it. And I could.

This is one reason that I don’t race much, least in relation to the amount of ‘training’ I do: that and the associated logistical challenge that come up with being unable to drive. I grew up knowing that day might come for me, and it did, ten years after I got my licence. I was still driving when I moved to Portishead, or I may not have bought a house on top of a hill… but I feel for you (Andy), having probably never contemplated surrendering your license and having had to do so. This is the only area of my life which I feel epilepsy truly affects for me: fortunately, Karen’s never known me any different, so we always knew we’d be a one-driver family. Least for a few more years, then The Boys can ferry us around.

Personally, I’m grateful to live in the times we do, because I’ve been working from home for six years now, having done so at least a couple of days a week for years prior to that. The first thing I establish in job interviews is whether I’ll be able to work from home; the second is whether they have showers for anyone run commuting. Increasingly, most employers offer the right answer to both questions.

Many thanks to Giacomo for sharing his thoughts and experiences, and allowing me to publish them here. The main image for this blog is some of his race numbers marked with the infamous purple X. If you’re newly diagnosed, someone with a diagnosis who’s weighing up running, or someone who sees ultrarunning as a way of dealing with a health condition, I’d love to hear more. Please add to the comments below…

Take care and stay safe,

Andy & Giacomo