# Cycling with epilepsy



## All uphill (13 May 2021)

Someone I know well has recently had two tonic clonic seizures.

The NHS has been fantastic and hopefully the seizures will be controlled.

Is anyone here diagnosed with epilepsy? It would really help her to know that her cycling days are not over.


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## classic33 (13 May 2021)

All uphill said:


> Someone I know well has recently had two tonic clonic seizures.
> 
> The NHS has been fantastic and hopefully the seizures will be controlled.
> 
> Is anyone here diagnosed with epilepsy? It would really help her to know that her cycling days are not over.


Myself, born and brought up with it. My outlook on may differ from that of someone who has been diagnosed "with it" in later life.

I've done a Blackpool and back(130 miles) for a bit of fun, cycled to work on an almost daily basis at one point.


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## PaulSB (13 May 2021)

Well I had to Google "tonic clonic" and now know the seizures I've experienced have been renamed!! I've had four "grand mal," tonic clonic, seizures, and probably a number of "petit mal" seizures. The first is a full on seizure, the second, in my case, a distant, far away feeling which I now recognise was quite regular for me as a child. I use to enjoy these!!!

Your friend's cycling days are most certainly NOT over. She may feel concerned about it for a while, possibly be given medication etc. but provided she's not in danger of fitting regularly I see no reason to stop. By regularly I mean every day. If these are a couple of "one-offs" it's no big deal.

I am very fortunate to know my triggers and be able to recognise when an episode might be on the way. My triggers are lack of food, excessive sugar intake, stress and sometimes lack of sleep. Each is controllable. For example all my cycling buddies understand I must stop and eat properly around 60-70 miles, beans on toast etc. I can only tolerate a couple of gels. I get about 20-25 minutes warning of a potential episode - give me a Spar shop sausage roll and ten minutes sit down and I'm good to go.

I would encourage her to look for similarities in the time leading up to her seizures. Discuss these with her GP and see if these are identifiable triggers.

Once I went to my GP and asked to be taken off my meds. I said something on the lines of "this only happens when X,Y,Z occurrs." She simply said "you do realise these are your triggers and you're lucky to know them." It took 30+ years for someone to explain this

Carry on cycling.


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## Dave Davenport (13 May 2021)

I've had three seizures in my lifetime, last one six years ago. Carried on cycling as normal even though the doc was a bit 'it's up to you but....' told him it was a choice between a very slim chance of having an accident and a strong probability of me being overweight and depressed in six months. On the plus side I cycled about 14 thousand miles in the 12 months I couldn't drive.


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## All uphill (13 May 2021)

Thank you for your replies and reassurance @PaulSB @Dave Davenport @classic33 

That really helps


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## Milkfloat (13 May 2021)

A friend had a seizure whilst cycling a couple of months ago, first in his life and he ended up a bit of a mess because it happened at about 20 mph. Luckily he was found by a kind driver who got an ambulance and sorted his bike out. Had a couple of weeks repairing in hospital and is unable to drive/ride until the quacks can get to the bottom of it. To be fair, it scared him massively and he is still talking about giving up driving and riding for life (he is only mid 40s) even if he can get sorted. Hopefully, he can get back at least into the saddle, not so sure about driving again, but if the doctors can get things under control then it would be good. His job is very reliant on a car.


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## All uphill (13 May 2021)

Milkfloat said:


> A friend had a seizure whilst cycling a couple of months ago, first in his life and he ended up a bit of a mess because it happened at about 20 mph. Luckily he was found by a kind driver who got an ambulance and sorted his bike out. Had a couple of weeks repairing in hospital and is unable to drive/ride until the quacks can get to the bottom of it. To be fair, it scared him massively and he is still talking about giving up driving and riding for life (he is only mid 40s) even if he can get sorted. Hopefully, he can get back at least into the saddle, not so sure about driving again, but if the doctors can get things under control then it would be good. His job is very reliant on a car.


Ouch!

Hopefully they can get some understanding and regain some confidence.

Best wishes to them.


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## Milkfloat (13 May 2021)

All uphill said:


> Ouch!
> 
> Hopefully they can get some understanding and regain some confidence.
> 
> Best wishes to them.


At the moment they are still at the stage of trying to work out a treatment plan or at least work out if there are any signs. He is a very fit, driven person so hopefully they can sort something out.


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## classic33 (13 May 2021)

I was told years ago I should stop cycling, because of the possibility of having a fit/seizure/episode/call it what you want whilst cycling. I countered with research has shown you are less likely to have one whilst doing something you like. The specialist acknowledged this to be true. I'm assuming your friend likes cycling.

I'm not able to say "I know what it feels like" as I've known no different. The fit/seizure/episode/call it what you want side I can understand. There's a period where I'll go through trying to work out what happened, but I've long since given up trying to work out what I could have done to prevent one in the first place. The best advice is to stay away from "Dr google", some of the stuff is bad enough to have me thinking twice. They can hurt like hell after, even with no visible injury. 

Any concerns, they can speak to/get in touch with https://www.epilepsy.org.uk or write any questions down before being seen, and work from the list when seen.

Don't let them saying "You can't do that!" put them off.


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## PaulSB (13 May 2021)

@All uphill can I just echo @classic33 with his last sentence. I would never encourage someone to go against medical advice. I would though encourage people to listen to their body. Mental and physical well being are equally important, I feel there is an argument mental wellbeing more so.

Your friend needs to understand what has happened, way up the risks and make her own decisions.

I speak as someone with epilepsy, survived a heart attack and a full on brain haemorrhage. My neuro consultant told me to limit cycling to 20 minutes - flat! Frankly I was in bits at this prospect. I found a neuro nurse who listened to me and taught me how to consider my mental and physical wellbeing. I ride about 150-200 miles a week.

As far as I'm aware there is no legal reason why your friend should stop riding. She must inform DVLA and it's highly likely her licence will be revoked for 12 months.


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## Ian H (13 May 2021)

I have no advice, but I know of two people with epilepsy who ride long-distance events, up to and including Paris-Brest-Paris.


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## Dave Davenport (13 May 2021)

PaulSB said:


> @All uphill
> 
> As far as I'm aware there is no legal reason why your friend should stop riding. She must inform DVLA and it's highly likely her licence will be revoked for 12 months.
> [/QUOTE
> It's better to voluntarily surrender your driving licence, quicker and easier to get it renewed, I found the DVLA medical department very helpful and efficient.


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## PaulSB (13 May 2021)

Yes, I think I did this. I can't remember as it was 2011. I do remember it was all very simple and I got my licence back easily.


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## All uphill (13 May 2021)

PaulSB said:


> @All uphill can I just echo @classic33 with his last sentence. I would never encourage someone to go against medical advice. I would though encourage people to listen to their body. Mental and physical well being are equally important, I feel there is an argument mental wellbeing more so.
> 
> Your friend needs to understand what has happened, way up the risks and make her own decisions.
> 
> ...


Thanks for this.

Yes, she has submitted her driving licence, having had two big seizures which qualifies as epilepsy.

I've passed on all the messages from this thread which have cheered her up immensely! So thanks again.

Now I need to find a way to relax a bit after seeing the seizures and having to keep her safe!


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## All uphill (13 May 2021)

classic33 said:


> I was told years ago I should stop cycling, because of the possibility of having a fit/seizure/episode/call it what you want whilst cycling. I countered with research has shown you are less likely to have one whilst doing something you like. The specialist acknowledged this to be true. I'm assuming your friend likes cycling.
> 
> I'm not able to say "I know what it feels like" as I've known no different. The fit/seizure/episode/call it what you want side I can understand. There's a period where I'll go through trying to work out what happened, but I've long since given up trying to work out what I could have done to prevent one in the first place. The best advice is to stay away from "Dr google", some of the stuff is bad enough to have me thinking twice. They can hurt like hell after, even with no visible injury.
> 
> ...


Seems we've been very lucky in having a specialist nurse who strongly recommend keeping cycling, with the condition that she listens to her body and doesn't ever go out when she doesn't feel it.

The nurse said the health benefits of cycling hugely outweigh any increased risk.


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## classic33 (14 May 2021)

All uphill said:


> Seems we've been very lucky in having a specialist nurse who strongly recommend keeping cycling, with the condition that she listens to her body and doesn't ever go out when she doesn't feel it.
> 
> The nurse said the health benefits of cycling hugely outweigh any increased risk.


I'd say attitudes to treating the condition have changed over the years. You can advise someone not to do something whilst treating the condition, but that is only part of it. Coming to terms with any condition requires just as much treatment as the actual condition itself. And this seems to be more widely recognized these days.

And thanks for staying with them, not running the other way as fast as your legs could carry you. That can be worth more than anything else to them.

Let them know it's nothing to be ashamed of. Mother nature plays cruel tricks on us all at some stage.


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## Mattk50 (16 May 2021)

I used to have epilepsy, complex partial seizures, for the first 35 years of my life until surgery. There are no hard and fast rules here. I used to cycle and have seizures sometimes. But because I had a warning then I had enough time to stop and get in a 'safe space'. Tonic clonic seizures would be more of a worry and I only ever had about 4 I think. I think it'd be a case of 'steady as she goes' and listening to your body, understanding your triggers if there are any.


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## glasgowcyclist (16 May 2021)

There are lots of weird ideas about what to do if you come across someone having an epileptic seizure so I’ll cut & paste the NHS advice here. Note the advice about never putting anything in their mouth and you should never try to restrain them. Put cushions or clothing appropriately to prevent injury from striking nearby hard objects.

*What to do if someone has a seizure (fit)*
If you see someone having a seizure or fit, there are some simple things you can do to help. You should call 999 for an ambulance if you know it's their first seizure or it's lasting longer than 5 minutes.

It might be scary to witness, but do not panic.
If you're with someone having a seizure:

only move them if they're in danger, such as near a busy road or hot cooker
cushion their head if they're on the ground
loosen any tight clothing around their neck, such as a collar or tie, to aid breathing
turn them on to their side after their convulsions stop – read more about the recovery position
stay with them and talk to them calmly until they recover
note the time the seizure starts and finishes
If the person is in a wheelchair, put the brakes on and leave any seatbelt or harness on. Support them gently and cushion their head, but do not try to move them.

Do not put anything in their mouth, including your fingers. They should not have any food or drink until they have fully recovered.


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## Mattk50 (16 May 2021)

Indeed. The greatest danger to someone having a seizure is the mostly uninformed general public! Oh and bureaucratic rules. I dropped like a stone on a tube platform and they closed the entire place down, called an ambulance etc. So embarrassing once I came to and had half a sense of what was going on not to mention the disruption to my fellow commuters on the Piccadilly line!


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