I’ve recently been diagnosed with epilepsy after suffering a few seizures, half of which have ended up with trips in an ambulance. I am on medication, but it is not working properly yet. Logically I know that riding in the short term is a really bad idea.

I’ve just bought a turbo trainer for in the house use to try to maintain any fitness. Is there anyone else on here in a similar situation? Any one manage to ride regularly? Hoping to level out on the medication, but unfortunately there are no warning signs, and I ride on my own mostly. My biggest concern is that I end up in a situation where I can never ride again.

Best discuss this with your doctor, but taking a practical view, if you can work out teh triggers and avoid them, and get the medication working, no reason you couldn’t ride with company as a back up. Best to start gentle, local and with easy access just in case and see how it goes.

I have relatives with epilepsy and it can be controlled, accepted as part of life without taking over everything you do.

Hope it settles down and works out.

Dave, I have to say I reckon your best bet would waiting to see if your meds can be stabilised and the seizures well controlled. There are loads of drugs out there and it can take the medics quite some time to tinker with them to find the one with the best therapeutic benefit and the mildest side-effect profile.

The turbo trainer is a good idea. I’d respectfully suggest that riding on your own isn’t a a good idea, but of course that is your decision – but adding a head injury following a seizure related fall would be a bad thing obviously!

As 40mpg says, hope it stabilised so that you can better accommodate it in your lifestyle soon. Maybe try and get in contact with some others who experience seizures to get a view on their experiences (everyone will be different but they will probably have a useful perspective).

Nowt to add G_D, but here’s some motivation 🙂

http://en.wikipedia.org/wiki/Marion_Clignet

as a non epileptic, please take my response with a pinch of salt, however..

Epilepsy should not hold you back from any activity really (with in reason). From a cycling point of view I’d perhaps avoid the road but riding off road should be fine so long as you are aware that you may fall off unexpectedly!

Now for the clever bit…

As a paramedic we regularly pick up people who have had a seizure, some are epileptic and some are not, however, the regular fitters often report an aura or sensation prior to a seizure (which colloquially some dogs can detect?). One of our regulars told me that any strange feeling he gets, he describes to himself in his head, in a revision kind of way, you know, walking down street thinking “right ball stuck to leg, oow” or “funny taste, reminds me of licking hammers”. By doing this he started to A: become aware of the weird things his body did and B: become aware of sensations that are precursors to seizurs.

I expect there is a lot of research into this and I’m sure you are are aware of some of this already, but it works well enough for this guy that he is able to predict with reasonable accuracy when a seizure is coming and get himself to safety. (he described it as like when you’ve had too much beer and you need to be sick, you get that strange feeling that means you’ve got about 90 seconds to find a toilet)

Hope it works out ok and don’t give up with it, turbo’s suck but keep on pedalling!

Yeah if you have warning signs you should be ok – you only need 5 seconds to brake and get off the bike 🙂

Give these guys a call:

http://www.epilepsysociety.org.uk/Homepage

They have loads of people who will be able to advise, and assist during the early days.

My wife was recently diagnonsed, and a few months in the seizures are almost under control.

ps. when riding, make sure your not alone, and make sure someone with you knows what to do!

My twin step sons had epilepsy and they seem to have been fit free for about 5 years (now thirty). they used to say their vision went a bit wierd before they were about to have a fit, so they did have a warning before it was going to start.

my 10 year old lad suffers with epilepsy so obviously isnt out riding alone. as it sounds like you have experienced, a seizure isnt necessarily something you recover from quickly. you can feel disorientated, ill and absolutely wiped out afterwards, or potentially have clusters of seizures. i work with many kids with epilepsy and the majority talk about being able to feel a fit coming, though often only a few seconds warning.

ride in a group. have a couple of mates who know what they are doing with regards to making you safe, administering meds etc. once you get your meds sorted they shoud be few and far between.

chin up!!

[uninformed comment]

I can’t see any reason why you wouldn’t ultimately be able to ride by yourself. Once you get things under control you’ll be able to drive a car and lets be honest, the consequences of having a siezure whilst driving are far more severe than when riding a bike.

[/uninformed comment]

Sorry for the highjack but thanks for the info. Half an hour after getting back from my last ride 2 weeks ago I to had my first seizure. Was in the car (not driving, my wife was thank god) at the time. According to my wife I stopped breathing at one point which as you would imagine freaked both her and my 10 yr old son out big time. Been to see the specialist yesterday and now waiting for an MRI and brain scan. Not allowed to drive for 6 months (which I can put up with) but like the op I’m more worried about my cycling.

Well, best of luck to both you and the OP on getting things straight!

Not all seizures are preceded by auras. It is not some kind of safety device, and there is a chance that even if you experience an aura prior to a seizure, that information processing will be compromised and you may be slowed up in your reaction times and decision making.

Much will depend on the nature of your seizures both in terms of the location of their origin (‘epileptic focus’ being in which part of the brain has a difference), and the spread of epileptic activity to other brain areas (i.e. does it generalise across a region, a brain hemisphere, both hemispheres). As noted you can get significant after effects, called post-ictal effects, during which people can be very fatigued, have poor memory and poor decision making. so, even with an aura, sufficient time and ability to stop and get off the bike, you may experience a fairly long period of clouded consciousness.

I really don’t want to come across as preachy or sanctimonious here, but as you already both know, it is specialist advice you need re the pro’s and cons of cycling for your individual circumstances. Epilepsy can often be very well controlled, and chances are you’ll both be riding your bikes where-ever and when-ever you please without worrying about it. But do talk to your neurologist or epilepsy specialist nurse about your particular presentation of epilepsy.

hi gd

i’m 41 and have had epilepsy since about 10 mostly grand mal although some peti-mal.

i see a specialist at walton hospital and he does not see it as a problem. Personally my triggers are stress and lack of sleep, I use my own judgment regarding sleep before a ride and if I’ve had enough and make sure I take my meds but he says that cycling like many forms of exercise are great ways of the body handling stress. His opinion was that I shouldn’t cycle alone and to always wear a helmet but I like most people get a warning first so should it happen then I have time to prepare myself.

I always tell the people I’m with in advance and give them the option of not riding should they feel uncomfortable or not know what to do.

My consultant also reckons that in a small group I am the least likely to cause a problem because statistically there is always someone with a heart problem (undetected) or asthma who is more of a potential issue.

I am by no means a decent rider at any level but I don’t let it hold me back and enjoy social riding as well as events such as sits, mm, ss events and the odd merida. I just make sure I tell the first aiders my condition and my race number. I’m also about to go on my first bivi in a week or so and am looking forward to that.

If you want a chat no probs just drop me a line I think my email is in my profile if not just respond to this thread

Hope everything sorts itself out and make sure you get back out on a bike.

cheers

Ninkynonk thats quite intresting regarding lack of sleep.I was working nights leading up to my seizure and I had only about 12hrs sleep in 64.The strange thing is though is that I felt really fresh at the end of the (albiet big) ride.

Thanks very much, all – all replies have been much appreciated.

Unfortunately I don’t seem to get any warning sign or aura, or if I do
then I have not yet learnt to recognise it. Similarly, I have not yet
discovered what is triggering them. I know that, as ninkynonk said,
lack of sleep can be a trigger, but it doesn’t seem to be one for me.
However, after my last one last week the A&E doctor suggested I don’t
use the tv or computer in the evening as these could be disrupting my
sleeping pattern without me being aware of it, so we’ll see how that
plays out.

My neurologist said that I can ride as long as I’m not on my own and I
stay off-road, but I don’t tend to ride with other people, and I feel
uncomfortable about joining a group now and putting that
responsibility on them. My wife used to ride with me sometimes, but
she’s not able to at the moment, so I’m pretty much stuck with the
turbo trainer. I’ve been thinking about getting some kind of GPS
tracker thing so that I am findable if I did go out on my own (once
the seizures are under control) but that’s just a vague idea at the
moment, and my wife is not exactly happy about it either, as I do
remain confused afterwards and twice have needed oxygen.

ninkynonk, the fact that you are able to do stuff like sits and mm has
given me a lot of hope – thank you, and good luck on your bivi.
ciderinsport, I’m glad that your wife has stabilised so quickly, and I
hope she remains well.

bjj.andy.w, I’m sorry you’re in the same boat – it’s not a lot of fun.
Good luck with the MRI etc, and I hope you get your appointments
through soon. For me the worst thing was the waiting to find out what
was happening. If you fancy a chat, my email is in my profile. I’ve
also to tell you that my wife sends best wishes to your wife – she
says my first seizure was the scariest moment of her life.

Thank you again for all the replies. They really did help.

Maybe if you were cheerydave you would have some ride partners 😉

Seriously though – whereabouts are you? My club (newforce.org.uk) have done first aid training for ride leaders so as long as we are aware of your circumstances (and a reasonable probability of you being fine) wouldn’t have a problem with you joining in. We’re quite good with collarbones now!

Hi GD,

I’ve had epilepsy since my mid twenties, I’m 45 now, and although it took a little while to sort out the meds, it now really has very little impact on my life, cycling and all. I drink very little (ok this might big a big impact for some, but I was never much of a boozer anyway), I lost my driving licence for a couple of years, but that just upped my bike miles, and I make sure I get enough sleep. Oh, and I make sure I take the pills. But really, that’s it. I ride on my own pretty much always, both on the road and off road. I go climbing, hill walking, again sometimes on my own, swimming etc. I do think some sort of gps/tracker is a good idea, but that really applies to most people heading out into the ‘wilds’ on their own.

I do get the ‘aura’ if I’m going to fit, but since taking the precautions above (especially not getting too tired) I very rarely fit – I actually can’t remember the last one, it’s at least six years ago.

Of course every case is different, and you have to become very self aware, but I guess what I’m saying is that all is not lost, and you should be out in the woods again in the not too distant future. Good luck.

i’m 41 and have had epilepsy since about 10

I’ve always wondered how people with epilepsy manage to ride on single track through wooded areas in sunlight, specially on a fast downhill – the strobe effect sometimes does my head in ! Seriously – how do you manage ?

I’m another one with epilepsy who rides, only had around 6 0r 7 seizures but the last two have been grand mal, use to have absences which were down to epilepsy as well. Had a grand aml seizure end of April after some serious weekends riding, had about 4 race events in March and early April then a weekend at Afan end of April then Cannock the weekend after. Woke up sunday morning feeling very confused/dizzy and didn’t want to eat just very tired. Felt like this for about 5-6 hours, unlike pre warnings from other seizures. I was in Wales at mother in laws and the wifes brother came to me and basically i had the seizure then which lasted about 20 mins and he had to give me CPR which obviously scared him sh@@less. I think mine was due to being rundown from doing too much and lack of sleep, use to drink but ahd seizure after a heavy night so pretty much stopped now. Anyway 2 months on and just getting back to normal as felt very lethargic and just had no energy as started playing footy 2 weeks after. I have lost me driving licence for a year which nearly cost me my job but am currently biking to train station, putting bike on train then biking to work. I have found a shortcut through some woods and am loving the ride, just need the rain to stop.

Epilepsy doesn’t stop you doing anything you just have to live around it and make sure your not putting yourself under too much pressure and getting enough sleep.

All the bestwith the test and i’m having MRI scan and stuff next week in Queens Medical Nottingham who apparently are very good and have dedicated epilepsy nurses.

Keep riding 🙂

I’ve always wondered how people with epilepsy manage to ride on single track through wooded areas in sunlight, specially on a fast downhill – the strobe effect sometimes does my head in ! Seriously – how do you manage ?

ernie_lynch, flashing lights is only one of many triggers when it comes to seizures. i have no issues with it and i remember speaking to my doctor who said it was actually quite low in terms of effecting people. if i remember correctly only about 15-20% of people with epilepsy were effected by flashing lights. the main factors are stress, sleep and alcohol but unfortunately it is very difficult to pin point exact triggers 100%

Maybe if you were cheerydave you would have some ride partners

Now there’s a thought… I suppose I should look into joining a group once I’m more stable, as it does look like it may be my only safe way of riding.

andrewy and Action Jackson, thanks for sharing your experiences. It really is helpful to know that I’m not the only one, and that people are still able to ride with it. AJ, good luck with the MRI.

Thanks again to everyone who replied. It has certainly helped, and I feel a lot happier.