Cycling and Epilepsy

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rugby bloke

rugby bloke

Veteran
Location
Northamptonshire
I'd been the first person to be so open about it and the impact of the condition on me. Many didn't like it. Maybe if more talked about it, and its effects on them, it would be less taboo.

I think things are much better now. I've always been open about my epilepsy. It came out of no where in my mid 40s so suddenly I w s asking every for lifts and started cycling every where. Almost every I have met have been very supportive. Riding for the Epilepsy Society in last year's Ride London helped spread the word as well.
 

jonny jeez

Legendary Member
I don't really understand epilepsy, what brings on a seizure, other than flashing lights. Does exertion contribute? Also what is it like having having seizure whilst riding do you feel any warning signs
 
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rugby bloke

rugby bloke

Veteran
Location
Northamptonshire
Pretty much anything can bring it on, in fact only a small percentage of seizures are caused by flashing lights. Mine used to come out of the blue - on the Tube, at work, riding in a car, at home. Exertion does not necessarily contribute - I ski, play rugby and haul myself around on a bike with no bad effects, in fact I think keeping healthy and active is probably a good thing. I've never had a seizure whilst riding, thankfully as I imagine the consequences cold be pretty bad. Most people have an aura, taste in the mouth or strong feelings of deju vue a few seconds before the seizure starts. I guess this might give you long enough to get off the bike.
 

classic33

Leg End Member
I don't really understand epilepsy, what brings on a seizure, other than flashing lights. Does exertion contribute? Also what is it like having having seizure whilst riding do you feel any warning signs
Half a century and I'm still finding out what it's like during a seizure. I'm on "auto-pilot" for anything from a few minutes to hours. During this time I'll carry on as normal, you'll notice nothing. Then comes the fit/seizure as is often shown on TV, that's when it becomes visible(and most of the damage done, either from hitting something or the fit itself). There's then a confused recovery, often looking up at the roof, ambulance or A&E.
As for how it feels after, I was t-boned nearly 11 years, hit by a car. I hurt less after that than the fit three months later.

There follows the "stupid question time", when I try to find out what happened between what I last remember and next have a genuine recollection of. Trying to convince someone who you've spent the last few hours talking to, that you don't remember isn't easy.
 
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I don't really understand epilepsy, what brings on a seizure, other than flashing lights. Does exertion contribute? Also what is it like having having seizure whilst riding do you feel any warning signs
There's different types, the one triggered by flashing lights is photosensitive epilepsy. You might recall the Japanese cartoon which triggered dozens of cases of that type over there including lots of kids who weren't classed as 'epileptic. The truth is we're all actually potentially epileptic but thresholds and triggers vary. The docs had no idea what triggered mine and fortunately my threshold seems to have increased. As to warning, I'm not sure but Ive had just two occurrences where I felt like I was going to black out in the last 15 years (room spinning, then darkness) and by immediately crouching into a ball and closing my eyes touch wood I've recovered. Although I've had similar occurrences also nothing been as dramatic. Events seem to have been triggered by standing stationary for a long time in heat. When I've actually fitted I haven't had any warning though and I've no idea what it feels like though I just kept on waking up in strange places with no recollection of how I got there :-/
 

Booyaa

Veteran
I've had three seizures when on my bike, first time I had no idea what was going on and landed on my head (helmet took the brunt of the bash) and the other two I could understand what was about to happen so jumped off the bike and got on the ground in time.

My epilepsy brought to light an AVM I had and I have had removed through surgery so hopefully I won't have any others.
 
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