Cycling and Grand Mal Seizure

[PaulSB]

I'm just wondering if anyone has experience or knowledge of the following as I now find myself in a bit of a quandry.

First some background; I'm 57, weight OK, average club cyclist (80 miles on a Sunday, can manage 100), generally ride at around 14.5 to 15 mph average. At age 14 I suffered a grand mal seizure, was treated with Phenobarbitone for a number of years and had five years of EEGs which failed to find anything. This seizure occurred during the return coach journey from an Austrian ski trip with school - up all night, very little or no food. At age 24 I had a second grand mal while at Blackbushe to see Dylan and Clapton - at the time I lived in York, travelled overnight to Surrey, little to eat etc. Had some more EEGs but nothing found.

Friday evening last week I had another grand mal, my wife is a nurse and midwife and was present, taken to A&E and released after blood tests (all normal), heart readings (all OK), blood pressure etc (130/60). This happened at 7.20pm and we got home around 12.30am so it all took a while. Looking back I realise I had a proper meal at about 18.00 Thursday, two bits of toast for breakfast Friday and then nothing more (I was cooking the evening meal when this happened!), plus I woke at 03.00 on Friday morning and couldn't get back to sleep. So again lack of food and sleep.

Normally I have three proper meals a day - bolied eggs for breakfast, salady lunch, home cooked meal in the evening.

I think the pattern is clear, lack of food and sleep leads to low blood sugar and a grand mal follows. There is no history of epilepsy in my blood family. I know that if I miss a meal or don't eat enough I sometimes get slightly shaky but this goes within minutes of eating.

At present I've been "advised" by the doctors in A&E and my GP not to drive, I'm happy to accept this and expect to be off the road for a year. A&E told me cycling would be OK and in fact good for me. My GP says I shouldn't cycle for a year for the same reasons as not to drive. I shall be seeing a neurologist in the near future and my GP has warned me to expect medication for the rest of my life - personally I think there is a clear trigger and hope the neurologist can demonstrate the same.

Obviously I have to wait for the neurologist's opinion but in the meantime I wondered if there are any others on here with a similar history? Perhaps fellow cyclists with epilepsy? Just looking to see if anyone else has an experience they can pass on to me.

many thanks

 

[Arsen Gere]

PaulSB,
I am sorry to hear of your condition. I have no personal experience of epilepsy or grand mal seizures, however I have experienced cautious doctors (rightly so). I lost a lot of fitness while they took two years to work out I did not have angina. I wish I had maintained my fitness.

I am no doctor but I like to read fitness papers and it is quite clear the role of hormones is not fully understood. I suspect you are right with the sleep food thing as this causes fluctuations in seratonin levels. I have also read that Aspartame may not be good for your case but I have no supporting clinical evidence for this statement, it might be worth doing some googling around these two (if you have not done so already).

 

[ClichéGuevara]

Paul, as the medical people found nothing, are you sure it is Grand Mal seizure as opposed to something more related to fatigue/sugar levels?

As far as advice goes, I reckon I'd be a fool if I said you'd be safe cycling as, unless catching sight of a trailer for Casualty counts, I've no medical experience.

For what it's worth, my opinion is that you've spotted what you conssider to be trigger factors, so if you can avoid cycling when they may be an issue and build into the equation the extra load on your system of cycling, you'll have to trust your instincts.

 

[PaulSB]

Paul, as the medical people found nothing, are you sure it is Grand Mal seizure as opposed to something more related to fatigue/sugar levels?

I can see why you ask the question. The seizure at 24 was witnessed by then girlfriend who was a recently qualified nurse. The recent fit was seen by my wife, a fully qualified nurse, and now senior midwife of some 34 years experience. I think when it is described as a grand mal this is accurate as a description but I personally believe it is NOT epilepsy and the blood sugar / sleep thing is the trigger. People associate grand mal with epilepsy and of course think the worst but my reading so far suggests this is a descriptive rather than specific term.

I shall be asking to go into hospital and be starved for a period to then have my blood sugar levels tested. My wife says she'll only let me do this if I am in hospital!!!

 

[PaulSB]

PaulSB,
I am sorry to hear of your condition. I have no personal experience of epilepsy or grand mal seizures, however I have experienced cautious doctors (rightly so). I lost a lot of fitness while they took two years to work out I did not have angina. I wish I had maintained my fitness.

I am no doctor but I like to read fitness papers and it is quite clear the role of hormones is not fully understood. I suspect you are right with the sleep food thing as this causes fluctuations in seratonin levels. I have also read that Aspartame may not be good for your case but I have no supporting clinical evidence for this statement, it might be worth doing some googling around these two (if you have not done so already).

Very interesting, thank you. I shall do some extra googling tonight. Just trying to build up as many questions as possible for the medics when i get to see them over the next few weeks.

 

[Nebulous]

Paul, I'm sorry to hear about your health issues and thought I would offer some thoughts / support.

I provide epilepsy training for staff within the organisation I work for, and have a great deal of interest in the subject. I'm not a Doctor however and my thoughts are no substitute for discussion with someone who can access your information, run tests and then discuss the implications with you in person.

First of all you need to separate out two different things, the condition and triggers. You can have an underlying condition which makes you prone to seizures. The seizures can then have a trigger. It's very possible for lack of sleep to be a trigger, but it wouldn't bring on a seizure unless you had the condition in the first place. Avoiding triggers will often prevent seizures from happening, though this is not always possible, and may not always work.

More importantly for you however is whether you cycle or not. You need to add up the odds and risks for yourself- if you are familiar with risk assessment processes you effectively need to do one for this situation. Work out the risks then look at what you can do to reduce them - things like only riding when you are well-rested and fed, or always making sure that you ride in company with others who have a means of getting help. Eventually it may come down to your own view of risk. If you are a cautious person who does not take risks you might decide it isn't worth it, or if you are more of a risk taker you may feel you are not prepared to let this rule your life and you will cycle even though it carries a level of risk. Engaging family and friends with this can help - though they will often err on the side of caution - they care about your safety without necessarily recognising how much you may get from cycling.

Try to maintain control and be in charge of the situation, rather than letting others make decisions for you.

Good luck, I hope it works out for you.

 

[gregsid]

I'm just wondering if anyone has experience or knowledge of the following as I now find myself in a bit of a quandry.

Paul, this sounds very familiar to me. I too have had seizures, all with several years in between, two of which witnessed by my wife. She was extremely alarmed and upset. I've had tests including a brain scan; all with no conclusive findings.

HOWEVER, on each occasion, it was noted that I was poorly with something quite benign; like tonsillitis or sickness etc.

My neurologist has said that it is a known phenomenon for some people, that if they feint (as caused by an illness, nothing to do with the brain as such), a seizure can result. This looks JUST LIKE a grand mal. It also seems that, in my case at least, I am susceptible to feints when I'm feeling particularly poorly.

I'm not qualified in this area apart from my own experiences. It's good that experts are looking into this for you.

You take care Paul.

Greg

 

[Red Light]

I've no experience of Grand Mal but we did have an episode of cluster headaches in the family (aka suicide headaches because of the extreme pain that is not amenable to painkillers). The one thing I would say is do not just go to the neurologist in the local hospital. Do some research and find one that is a recognised expert in Grand Mal. It makes all the difference between someone futzing around not sure what they are doing and someone who knows what they are doing. I have seen so many examples of futzes wasting everyones time with the wrong diagnoses and wrong treatments

 

[PaulSB]

First and most important my thanks to everyone for their kind words and suggestions as to how to move on - it is much appreciated. Some of your thoughts had occurred to me, others not and its lead to plenty of reading and discussion at this end.

My theory is this. History of three grand mals spread over 57 years but I also know I get slightly shaky and clammy if I miss a meal or get hungry. For the past 33 years (i.e. since fit at age 24) I've controlled this by eating immediately I feel odd, as an aside I have always eaten a lot on the bike. I think I may have a tendency to produce high levels of insulin and this means my blood sugar levels can be lowered rapidly under certain circumstances causing a fit. Before this last fit I had only eaten two slices of toast in 24 hours plus a packet of jelly babies I'd munched through in the afternoon while rushing around - normally I have three proper meals a day. I think eating the jelly babies gave me a massive sugar boost and high insulin production, once the blood glucose had been used up I still had high insulin levels and because I hadn't eaten properly in 24 hours nothing for the insulin to work on. The other thing is immediately prior to the fit I now remember I got the shaky, clammy feeling I am familiar with. At the time I was preparing our evening meal and went to sit down - my usual remedy for this feeling is banana, bowl of Weetabix or similar but last Friday as I knew tea was only 10 minutes from being ready I didn't take any food.

I have an appointment with a neurologist in Preston. Apparently Preston is the north-west centre of brain injury, any form of emergency etc. and one gets transferred to Preston, so I though I'd start at the top. I'm seeking out an endocrinoligist to discuss blood sugars etc. and see if my theory is correct or at least chasing in the right direction.


The No.1 thing is I'm absolutely fine, no different today from 10 days ago!!! I've also decided I'm not going to allow this little event to have a big impact on my life; this was my third fit and each time I have been lacking sleep and have eaten little or nothing in a 20-24 hour period. My GP says we all have the potential for fits but these occur in a relatively few people as for most the "triggers" are always under control. In my case it seems sleep and food are key and I need to take note of this and will be doing so. I have cancelled the three day tour planned for next week but that's just a sensible precaution.

The DVLA say I have to surrender my driving licence and depending on the outcome of my tests this will be for 6 or 12 months. This is going to be a hassle as I work 40 miles from home and commuting by public transport is not feasible - 2 hours 40 minutes!! My employers have been great and I shall work from home as much as possible (we already have full remote access for weekend working) and will get a member of staff to drive me to visit customers who are not easily accessible by train.

I think I've found a decent train and cycle commute; I shall be testing it next week - 4 miles home to station, 35 minute train, then 10 miles to office. The only problem I see with this is the train is so crowded I can't reasonably take my road bike on the train in rush hour. If this commute looks reasonable I shall be looking for a folding bike of some sort under the Cycle to Work Scheme. I'm also looking at various car share schemes to get me to my general work area and then complete the journey by bike.

Thanks again to all, the comments really are appreciated.

 

[Lien Sdrawde]

Grand mal is very distinctive - and could not be confused with a feint / hypoglycaemic attack! Just in case, wait till you've seen the neurologist who will hopefully give you the very best advice following his investigations into your longstanding / or perhaps new condition - cos at the moment you cant be sure what the problem is, and its easy to presume that the recent event is jsut like your previous events.

Since your last series of investigations when you were 24, technology relating to all things neuro has moved on a bit and will hopefully help identify the problem. I'd wait.

Good luck. Neil

 

[gregsid]

First and most important my thanks to everyone for their kind words and suggestions as to how to move on - it is much appreciated. Some of your thoughts had occurred to me, others not and its lead to plenty of reading and discussion at this end.
...snip...
Thanks again to all, the comments really are appreciated.

I think you've approached this episode very well. You're certainly doing the research! You've summed up the most likely reasons and it's almost certain that's correct (in my non-expert opinion).

You have a wonderful employer too. Hats off to them.

Take care Paul and update us.

God bless

Greg

 

[gregsid]

Grand mal is very distinctive - and could not be confused with a feint / hypoglycaemic attack!

They can be confused - though the causes are worlds apart - see here:
LINK:
You may be reading this because you, or someone you know, have just been diagnosed with non-epileptic seizures. Non-epileptic seizures (NES) often look like epileptic seizures but they have a different cause.

Greg

 

[PaulSB]

Grand mal is very distinctive - and could not be confused with a feint / hypoglycaemic attack! Just in case, wait till you've seen the neurologist who will hopefully give you the very best advice following his investigations into your longstanding / or perhaps new condition - cos at the moment you cant be sure what the problem is, and its easy to presume that the recent event is jsut like your previous events.

Since your last series of investigations when you were 24, technology relating to all things neuro has moved on a bit and will hopefully help identify the problem. I'd wait.

Good luck. Neil

Yes I certainly appreciate this and will be having long conversations with the consultants I see. I have been trying to look at all possibilities to ensure I ask relevant questions and give as much information as possible. The last thing I need is for doctors to make assumptions / reach conclusions based on less than complete information.

My wife was present within moments of the attack. She is a very experienced nurse and midwife of some 34 years so when she feels it was a grand mal I think I have to go with that. Our next door neighbour is also a highly experienced nurser / midwife and she was present within a few minutes. So two very well qualified people present at the time.

I think, and we obviously need advice, I have suffered a grand mal and the trigger is in some way connected with food, sleep and blood sugar. My father was hypoglycaemic and used to have seizures - however he was also an alcoholic. As both my parents are long deceased I don't have any way to look into this aspect further.

You can be sure I'm not going to jump to conclusions but will look at the widest possible reasons

 

[PaulSB]

They can be confused - though the causes are worlds apart - see here:
LINK:
You may be reading this because you, or someone you know, have just been diagnosed with non-epileptic seizures. Non-epileptic seizures (NES) often look like epileptic seizures but they have a different cause.

Greg

Very interesting, thanks

 

[fossyant]

Best of luck mate !