Epilepsy won't stop Ryan achieving his personal bests

If anyone asks Ryan Tindall why he is constantly striving to run further and raise even more money for epilepsy charities, he’ll answer “Why not?”.

And it’s this can-do attitude that helped Ryan to take on his biggest challenge yet. In April, he planned an Ultra Duathlon, which would see him cycling from his home in Liss, Hampshire up to Manchester over a 48-hour period, then don his running shoes for the Manchester Marathon on the third day. Unfortunately, a seizure on the morning of the Marathon put paid to Ryan being able to take part, but he is already making plans for 2025.

“I did my first marathon in 2021, first ultra marathon in 2022, and when I was planning what to do next, I realised there’s no such thing as an ultra-duathlon,” says Ryan, who is 43 and lives with his wife and three children. “Epilepsy doesn’t define me or who I am and certainly doesn’t mean I can’t achieve things. Am I going to win a race? No. But will I complete it? Yes. I will find a way somehow to get it done.”

Being positive and pushing himself has enabled Ryan to clock up many miles and raise thousands of pounds for epilepsy charities in recent years. But he’s honest about how far he’s come in terms of both mental and physical health since his initial diagnosis with Temporal Lobe Epilepsy, which happened in 2011, a year after first having a seizure in his sleep.

“It took me about seven years to come to terms with diagnosis. I felt belittled as a human. I used to look very different; I lifted weights and ate a lot. I wanted to show the world that I was bigger, stronger, and could do everything faster and harder. I was doing things to prove that I was better than anyone else.

“Then someone said I have to start wearing a bracelet to let people know I have epilepsy, and someone said I couldn’t drive any more. I had to have occupational health reviews where I was worried I might be told I was losing my job. And at home I felt like a burden and wondered if my wife was better off without me.”

Ryan developed severe depression and anxiety and started to distance himself from friends and family. The turning point came when an old friend took him for a drink and told him that he was acting like a different person and needed to get help. He decided to act on the advice and gave in, speaking to doctors and therapists about his mental state and health fears, accepting this wasn’t going to be a quick fix.

“I started to take my meetings with consultants more seriously. I’d share my feelings about the medications I was on and the panic attacks I was having.”

As Ryan started to come to terms with his epilepsy and take steps to work on his mental health, he decided it was a good time to look into how lifestyle changes may also offer some benefits. He started following a ketogenic diet, documenting his meal choices and fitness training on Instagram. And he took up running, quickly working his way up from a Couch to 5k to the extreme distances he can manage today.

Ryan’s epilepsy is drug resistant, and he is currently still discussing the possibility with his consultants at UCLH and the Chalfont Centre of having brain surgery to help with his seizure control. While this option remains on the table, he has found that the lifestyle changes he’s made have reduced the impact of seizures and boosted his mental well-being.

“The fitness and food side of things has helped along with the drugs I take to make my seizures ‘softer’. I never used to have auras, but I have them now, and I very rarely have generalised tonic clonic seizures. I don’t feel horrific for as long after a seizure any more, and my mental health is so much better.”

Ryan is also feeling more comfortable at work at a professional services firm, and recently joined a disability and neurodiversity network as well as putting together some information to help his colleagues build their understanding of epilepsy. And he’s also taken up invitations to speak to and support people at an earlier stage of their epilepsy journey, recently joining a talk for a group of young people on the Isle of Wight.

“When I spoke to the young people, I told them not to be afraid of being active. I get asked things like is it safe to ride a bike or go trail running – there is so much anxiety, but I want people to feel confident. I interact with so many families that need to know that somebody is doing something.”

Ryan has found having a positive outlook has really helped him, and he wants to pay it forward for those who are struggling to come to terms with the impacts epilepsy can have on daily life.

“You have to stay positive. I hope that one day I might find a new medication or get some answers. There are so many people that I speak to who are in a far worse situation in terms of their condition and the frequency and strength of their seizures.

“I spent so long hating epilepsy, and now I’m at a stage where I don’t hate it. You have to set yourself goals, and it won’t stop me achieving them.”