Running with epilepsy

Im a seasoned runner (15 yrs) but new to epilepsy

12 messages
24/04/2012 at 18:21
I had a seizure, well 3 actually, 2 weeks ago and feel completely devastated by. The whole situation.

Im looking to find any positives with regards to running and although I read there are 600,000 epileptics in the UK I can't find any info on the matter anywhere.

I'm also struggling with the medication which leaves me drained and feverish at times.

Is there anyone else who was diagnosed later in life but label to resume running?

Thx in advance Paul
07/05/2012 at 18:14
Hi,
I was diagnosed in 2010 aged 44, and have been on medication since. I couldn't run to start with due to the drugs but after a couple of months I was back on the treadmill. The epilepsy nurse suggested not to swim or cycle until they were sure that the medication had stabilised the condition (I had already come off my bike once with a seizure and ended up with stitches in my head!).
Now I am back driving and training as before. The medication takes some getting used to but you'll get there. One of the side effects of my medication is weight gain so I have to train or I would be the size of a house!
I always were an ID bracelet with all my details and medication on it and I always declare my condition on the back of my race number.

My advice would be to discuss running with your epilepsy nurse if you have one and to do as much as you can, but be safe and sensible until you know you are stable.

I hope this helps.
Fi
07/05/2012 at 21:28
Hi Fi,

Many thanks for taking the trouble to reply.

Coincidentally I am 44 also.

Things have improved slightly as it turns out my liver was being inflamed by a reaction to the medication I was prescribed and since being withdrawn from this my fever, temperatures and horrific nightmares have stopped.

I'm back at work and just hoping to get through the next few months before considering returning to exercise.

Guess life just doesnt seem fair at times because my diagnosis of epilepsy comes off the back of 15 years of running 30-40 miles a week and then 2 years ago I had a stroke and was finally feeling I was on the mend having taken part in a few parkruns this year.

Rgds Paul
07/05/2012 at 23:07

I've been epileptic for 22 years now, since I was 6ish. It's never affected my sport - I swam competitively at school, I've got a green belt at Judo, have fenced, trampolined  and cycled. 

I've been on my current medication for 12 years (they didn't medicate me at first because my fits were only one a year and they hoped I'd grow out of it, put me on valproate at 12 when the fits became slightly more frequent,then changed it to lamotrigene when I was 16). Once the medication was right, I've had no further fits (11 years now and my driving licence is no longer only a 3-year one).

Basically, if you are lucky like me you may just be able to take the medicine twice a day and forget about it otherwise. Yes I have a necklace, I carry a card with my medication details and so on, but that's no hassle. I'll never be able to scuba dive, but that's not really much of a hardship.

Good luck and don't despair.

 

07/05/2012 at 23:09

Just realised you were asking about being diagnosed in later life - sorry. I hope my reply helps in some way anyway.

07/05/2012 at 23:55

Paul you will get over the devastated bit. Loads of people have it but just don't wear a badge and you'd never know. I do remember the lack of confidence after a big fit, the fear of having another one in a difficult situation (big meeting, public event, whilst alone with child, walking cliff path/isolated spots or cycling) or a big injury (last one left me with a 'night in resus/hospital' head injury unfortunately). A few months of making less sense than normal and I'm back to myself. I suspect you've been here with the stroke though?

 

Depends how well controlled yours will be as to how quickly you get confidence back.  

Some meds make you feel like death. I swapped mine for that very reason and am very happy on current ones.  It's now just another drug I take and epilepsy doesn't exist (I have decided). I have my licence back. I'm a lapsed runner but cycle, so similar issues.  Probably the best advice is to carry id and a card (you can get epilepsy specific cards free from BEA) and consider your routes-either telling someone or sticking to populated areas. Carry a phone and make sure you fuel and hydrate well and don't over do training. Be well rested. (I don't do any of that however, because denial is working best for me )  

It's early days for you- things will stabilise  

09/05/2012 at 18:02

To Madge/CatRuth,

Thanks to you both for your positivity.  Its been 4 weeks now since my triple-seizure

As you both say its the confidence knock and fear of future events. My wife worrying if a drop the shoe or the toilet seat..

I've sent off for a bracelet & have also setup Google Latitude on my phone so my wife can track my whereabouts.

I'm hoping I can start thinking about some gentle exercise apart from walking soon and get back to what I love and the psychological benefits that it brings.

As you both so its the fact that it is quite a silent/invisible community (which is a good ting) because its not like wearing a plaster cast or  walking with a limp.

PaulK

 

 

09/05/2012 at 19:11

I can certainly relat eto that Paul.  I was diagnosed at eighteen but I'm sure it still really knocks you at any age.  So glad that there's online communities around now for people to swap info/ideas etc.  I've done four marathons and someone who used to post on here has done similarly.

 

Here's a couple of links, you may already have found them but if not they could be useful

 

Epilepsy Action

Epilepsy Society

 

 

09/05/2012 at 21:52

4 weeks is nothing.  It probably is time that will make you feel more confident.

 

10/05/2012 at 22:23
Thank u XFR Bear.

I know it's completely different but there's been a lot of public awareness campaigns about dementia of late and if the figures of 600,000 are true then this is so similar to epilepsy yet before April and my own issues I can honestly say I was completely in the dark about epilepsy although I was well aware of dementia via press, tv and family/friends.
15/09/2012 at 18:24

Hi,

living with epilepsy can be difficult for some people, that is way managing epilepsy can evolve as the master alternative and solution, but it is not just about taking medication only, It is also important for you to look after your health, monitor your epilepsy and your response to medication and take care to stay safe. Getting involved in your care in this way can help you feel more in control of your epilepsy so that you stay well and continue your life.     People with epilepsy can live normal lives. Many athletes, authors, politicians, entrepreneurs, doctors, parents, and artists have epilepsy.

you can read the full article at:

http://www.biomedresearches.com/root/pages/researches/epilepsy/living_and_managing_with_epilepsy.html

with best of luck

31/12/2012 at 13:33
I an 56 and been running since I stopped playing football in my early 30 s. I had a couple of epileptic seizures in my teens but went for years with nothing. 10 years ago I had another on a bike.To cut a long story short I have been on a range of medication and currently on keppra and epanutin. My problem is that I have absence seizures which means I stop ,stay still, for anything between 2 and 20seconds. it hen am ok.I am a member of a local running club and over the last 6 months I have been having more of these seizures while running. People in the club know all about it and if I have one someone will stay with me. but it it is a real pain and I wanted to know if anyone else had a similar condition who ran and what they had done about it. reading the entries I think there is still a lot of ignorance about the condition but would be interested in hearing from others.

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