So I’m 45 and suffered my first seizure while in Madrid on Saturday.

I’ve surrendered my driving license and seen the neurologist and nearly a week later I’m sitting here quietly stunned thinking WTF. On the other side the MRI scan, bloods and x ray was clear which to me is great news. Statistically one off seizures with no repeat events are in my favour but I’m taking it day by day without building my hopes up.

I’m determined this illness will not define my life past what’s legal or sensible I’m establishing what are the real life impacts in having this condition and carrying on mountain biking? Any informed opinions will be gratefully received.

The vet suggests I avoid dehydration and lack of sleep. Anything else?

Thanks in advance.

picked up on post as some parenting experience with siezures in children – so f a use but a bump
hope some useful advice comes along

Give these guys a call

Epilepsy Society

I worked there for several years and the support line is very good. They will be able to advise you on what to expect.

Medication (if you ever need it) is very good nowadays with fewer side effects. Plenty of people live perfectly normal lives with seizures kept well under control.

Good luck!

Statistically one off seizures with no repeat events are in my favour but I’m taking it day by day without building my hopes up.

Brother had one after a serious car crash, must be 25 years ago, has never suffered from one since. Best of luck

Been there got the t-shirt…

Had one about four years ago now. Was stressed out to the max at the time, went out and got pissed, had four hours sleep and had a seizure the morning after.

Did the same tests as you, saw neurologist, mri etc all clear. There’s no doubt in my mind it was a combination of the stress, booze and lack of sleep.

I’m now very careful about managing stress levels and getting a good nights sleep. And after being a bit of a boozer for years I stopped drinking apart from the odd pint. Aside from not having another seizure I’ve never felt better and feel like it was a good wake up call.

Email me if you want more info.

My wife had a one off seizure about twenty years ago. I was with her at the time and it frightened me to death.

She had an MRI and a brain scan and loads of other tests. She also informed the DVLA and lost her driving licence.

The final opinion was that it was caused by lack of fluids (dehydration) and lack of sleep! Her Doctor said that we can all ‘fit’ if we don’t look after our bodies properly. She got her licence back when the Doctor wrote a letter to the DVLA explaining the circumstances.

So good luck and let’s hope you get the same outcome.

Were you awake or asleep when it happened? I was diagnosed epileptic at 15, but only ever had fits whilst asleep.. dunno if I’ve grown out of it as haven’t had one in about 6/7 years.. doesn’t alter my lifestyle at all, just means taking a couple of tablets a day..

Think there’s loads of different types of epilepsy, some brought on by strobe lighting, others by stress/tiredness/overheating etc.

They’ll do some tests on you, few scans etc under different conditions (strobe lighting etc) etc to see what causes various electrical activity in your brain and then advise you based on that.

But yeah, doesn’t have to affect your life, I got lucky – has no bearing on my life whatsoever.

In terms of continuing your cycling, did you get any warning signs pre seizure? felt weird, an aura, headache, taste etc. If so you may recognise it again and lie yourself down to avoid injury rather than attempt that rad descent.

Slowmart

E-mail me ASAP. I have loads of advice on this having been there myself and I have a son with the same condition.

Firstly and most importantly STOP calling them seizures. Given your age and the fact that you’re exercising it is more than likely that you have NOT had a seizure, even though your episode may have had the symptoms.

I would happily give you a call so I can talk you through what I know and a probable diagnosis.

Hopefully it will be a one off. I’ve had epilepsy since my early 20’s (47 now) and apart from having to take the pills, it doesn’t have a great effect on my life. I lost my driving licence for a couple of years which was a bit of a pain, but living in London and being a cyclist, it wasn’t too big a deal. Your situation may be a bit different.

The only other big(ish) effect is having to avoid alcohol. I wasn’t a big drinker anyway, and a pint is ok, but no more. Also, I would agree with getting enough sleep. If you’re a bit of a party animal, then these two combined could be a bit of a downer. But on the other hand you’ll always be able to get up bright and early and get on empty trails before the party animals!

You’ll need to wait a little while to see how things pan out, but if you’re anything like me then there is no reason to give up mountain biking, or climbing for that matter. All personal choice of course, but the condition need not dominate your life. Best of luck 🙂

I know what you’re going through – I had a “grand mal” while asleep when I was 23. It was more traumatic for my wife than for me. the first I knew was being wheeeled down the stairs in a wheel chair by the paramedics. Scans and tests showed up nothing and I was all set to get my driving licence back when I had another one a year later, again, asleep.

The message at the time was avoid stress, get sleep, eat regularly don’t drink excessively.

I’m on a low does of Epilim which has no side effects and I have blood tests every 6 months.

Its a big shock when it happens. Especially as at the time, surfing was my life and being told I shouldn’t even go swimming was a nightmare for me.

Its a question of context though and if its irregular, then it needn’t affect your life too much. I started surfing regularly, but with friends knowing to keep an eye out. Its a completely different scale for those that get seizures while awake and regularly.

Its a big shock and worth speaking to the charities if you’re concerned. It makes you realise your human and vulnerable. As they’ve probably told you, the brain is a massive unknown and often they never find out what causes these.

Please, I know its harrowing for people that have been diagnosed with epileptic episodes in the past but until it is diagnosed for Slowmart don’t assume that it is. There is now wave of evidence to show that ‘seizures’ caused by other factors are not seizures at all and have been mis diagnosed in the past as epilepsy, and this is more prevalent in people like ourselves IE people of a certain age who keep themselves fit by riding their bike regularly.

When you get over the age of 35 your body makes automatic adjustments to your valve systems to allow for expected increases in blood pressure (basically to stop your head exploding), but as you exercise you are obviously keeping your blood pressure down. In turn this means that you are more prone to slowing the blood supply to your brain. Add to this a night on the ale, Chinese and a load of caffeine to nurse a hang over IE dehydrate yourself and you are almost guaranteed to faint (not have a seizure).

Fainting can and does have the symptoms of a seizure. This has been proven in Germany when they caused groups of patience to faint and then recorded the results. The seizure symptoms were particularly prevalent in patience that were dehydrated or were considered physically fit.

There is a simple test to see if you are prone to this which would be organised by a cardiologist. It’s called a table tilt test. You are literally dehydrated and strapped to a bed and tilted. If you your blood supply to your head fails slightly then you simply faint. Crude, but it rules out epilepsy and confirm a syndrome called Vaso Vasal Syncopy (don’t know if that’s spelt correctly). Most people can last up to 45 mins on the table. I lasted 5 mins.

All it means is lots of salt in my food drink electrolyte drinks and don’t get dehydrated. No issues with driving or changes in life style and certainly no reduction in MTB’king !

Nothing really to advise the OP, but (im just trying to lighten the thread a little, so don’t be offended)

The vet suggests….

Are you in fact a dog?

Please get your advice from people who know what they are talking about. Epilepsy society, doctors, nurses and patient groups. You appear to have some knowledge already that is reasonable and sounds likely to be accurate.

Don’t get diagnostic advice from this website, get it from a doctor. Some of the comments on here are inaccurate and potentially dangerous.

I don’t often post on here but as a neurologist I think I have some authority.

In light of evh22’s comments I will add that I have only described my own, and my son’s personal experience and diagnosis, firstly by a specialist neurologist and then by a specialist cardiologist (one of which turned out to be a biker too) and the final diagnosis followed a series of other tests not just the table tilt test.

Of course you should always seek the advice of your own doctor and specialist in the relevant field as everyone’s circumstances differ.

I would however just add, (and this not an attack on all neurologists or you personally evhh22), that our experience of our first referral to a neurologist was woeful and resulted in nothing but worry for me and my son and a mis diagnosis simply because he could not conclude anything himself with the crude out dated tests he had recommended and refused to consider that there maybe a cause other than neurology.

“Please get your advice from people who know what they are talking about.”

I didn’t read other’s comments as giving advice, simply saying what advice they had received from the medical profession. where is the “potentially dangerous” advice? getting sleep, drinking less, avoiding stress?

I assumed it was a given that he would be getting and listening to advice based on his facts.

I’d second the neurologist’s comments.

The chance of each of us having a seizure once in our lifetimes is comparably high, but not everyone having a fit is epileptic.
As mentioned, there’s loads of causes for fits.

Excitable1 may be referring to ‘anoxic siezures‘? – which have a cardiac cause (lack of blood to the brain = fitting).
There’s a cracking video of German med students from the 70s (“who wears short shorts….”) hyperventilating whilst crouched, then standing up – they then pass out and fit.
Me and my house-mate did it as students (perhaps with a tipple on board) and he fitted… Oh the laffs…..

Anyway – good luck, chat to a Dr…

DrP

I don’t think the responses have suggested or assumed that he now has epilepsy, they are commenting on how they have dealt with seizures in their lives. The doctors said to me that one seizure does not mean you have epilepsy. My second seizure meant that I was diagnosed with it, but in reality the diagnosis changed very little in terms of how I changed (or didn’t change) my lifestyle and the medication I was on.

Vasovagal is the correct spelling of the correct diagnosis given to my son & I.

Seizures and epilepsy is the correct spelling of the misdiagnosis given to us by the old doddering fool of a neurologist in our first round of ‘consultations’.

Flipside of what this could be- mate of mine has been diagnosed epileptic since he was in his early 20s and got treatment tablets etc and all seemed to calm down, about two years ago he collapsed a few times and went to the docs and had to surrender his licence etc,
To cut a lot of tooing and froing out of the story another consultant fitted him with a heart monitor to see what happens when these seizures were happening, turns out theres a good chance hes never had epilepsy and has a heart condition that has needed a pacemaker fitted,the guys is now much fitter, feels better and has his licence and more importantly his life back.
Maybe just maybe yours isn’t neurological either

My mates story;
http://www.thisisleicestershire.co.uk/s-speed-ahead-pacemaker/story-16819787-detail/story.html

Vasovagal is the correct spelling of the correct diagnosis given to my son & I.

Seizures and epilepsy is the correct spelling of the misdiagnosis given to us by the old doddering fool of a neurologist in our first round of ‘consultations’.

Okaaayy…. 😕
Though… a vasovagal syncope IS a cause of an anoxic seizure, which is a form of non-epileptic seizure.

Pah – I’m getting pedantic now. It’s Friday, I’m off!

DrP

Whoops, sorry for causing a stir. To make up for my comments I have done a mini literature review for you.

This website describes first seizures well and talks about what could be the cause, explains investigations including other causes of collapses that will be considered.

http://www.patient.co.uk/doctor/First-Seizure.htm

The epilepsy society website talks about “epilepsy”. “Epilepsy” is usually defined as having had more than one fit rather than just a single seizure. This is because single seizures are common and not all people (particularly those with normal scans) go on to have a second. So some of the information is not relevant after just one seizure. But it has info about driving, sport, first aid, medication and avoiding seizures, what you can do etc. and a phone number 9-4pm 01494 601 400.

I’m really pleased you got your investigations and saw a specialist quickly. They remain best placed to give you individual advice regarding diagnosis and your chances of having further seizures. This will help you decide what to do about biking. Your GP (when they get all the details) will be able to advise if you want a quick answer.

But as everyone on here says, don’t panic! This is a common thing to happen and you appear to have taken in much more information that most people do the first time they see a doctor! 🙂

Practical advice: are you in the UK? If so: you get a free bus pass if you can’t drive (not really much of a replacement, but hey, you may as well use it). You should request your license back from the DVLA in 3 months. Sometimes for a single seizure they let you drive again after 6 months and it takes 3 months for them to get it sorted.

Thank you for the replies, support and best wishes.

I’m relaxed as to the outcome or diagnosis as I’m in process and the outcome will be determined by health professionals.

Its early days and my approach is to take things day by day and see how things develop.

I have the best wife a man could wish for and compared to so many others my lot is still much better than most.

I dunno if this will help but… In the mid 90’s my dad had a couple of serious sezuires and it turned out he had a serious growth on the brain, about the size of a lemon between the hemispheres of the brain. It was a terrible time for me as a teenager and my family (looking after my mum who had alcohol probs at the time for another reason) bad stuff is part of life as much as you don’t want it to come or happen it happens.

Went through the same as the op 18 months ago. Leading up to my “episode” I was doing 12hr days or nights solidly for 2 months as well as biking x 3/4a week,martial arts training x3 a week and a serious lack of sleep. As in only 12hrs sleep in 86. Went mtb’ing in the lakes on the Sunday, got back and then it happened. For two weeks after I was pretty groggy. My wife said it was like I had a time delay if anybody asked me a question. Had all the scans which all came back clear. The specialist said it was just a one off and ( touch wood ) I haven’t had one since.

Aye – seeing your first vasovagal episode is enough to make you poop yourself.