Endurance Athletes With Epilepsy

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You guys are awesome. I wanna be like you when I grow up.

Only advice I can offer is take your meds at specific times and avoid situations were drowsiness can occur during exercise.
 
Hi
Am interested in your post. I just had seizure having been 4 years free and before that 16 years Med and seizure free. Have just got into triathlon and been road biking for 2 years am considering going on lamotrigine which neurologist recommended 4 years back. How do you find meds and training?
 
Am interested in your post. I just had seizure having been 4 years free and before that 16 years Med and seizure free. Have just got into triathlon and been road biking for 2 years am considering going on lamotrigine which neurologist recommended 4 years back. How do you find meds and training?
 
Hello

I am an avid athelete. Between the gym, yoga, running, and sometimes crossfit.. I have actually found that when I keep up with an actual "routine" it lowers my seizure activity. I want to attribute it to the fact that I am just exhausted and sleep great as well as being physically and mentally fit.

I don't have any insight into the 02 aspect but I really believe in the routine part. same time, same med and sleep schedule, eating healthy.. it all adds up.
 
bka1212 said:
Hello



I am an avid athelete. Between the gym, yoga, running, and sometimes crossfit.. I have actually found that when I keep up with an actual "routine" it lowers my seizure activity. I want to attribute it to the fact that I am just exhausted and sleep great as well as being physically and mentally fit.



I don't have any insight into the 02 aspect but I really believe in the routine part. same time, same med and sleep schedule, eating healthy.. it all adds up.
Click to expand...


Thanks
Are you on any meds ?


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Yes. Zonegran, Trileptal, and Onfi (thank god for that drug!!)

I take them all at night bc of the side effects. Its like one big sleeping cocktail. And if I'm stressed I used my meditation app called Headspace. Best ever.
 
Brighton said:
Hi
Am interested in your post. I just had seizure having been 4 years free and before that 16 years Med and seizure free. Have just got into triathlon and been road biking for 2 years am considering going on lamotrigine which neurologist recommended 4 years back. How do you find meds and training?
Click to expand...
Brighton, I've always ridden distance, meaning 100-200 miles in one ride. I've never competed in any cycling event. I routinely try to PR my own times on segments, rides, or tours. But that's really different than "officially" competing.

Re: lamictal: It was added to my Keppra about a year ago. I don't think it has had an particular positive or negative effect on my riding. I continue to ride 12,000 miles a year.

As someone else said in this thread, my cycling is a key element in my daily self-care. I ride every day--for transportation s I can't drive, for commuting, errands, training for my next "big event", improving my hill climbing, etc.

And, as someone else said, meditation is also a part of my daily self-care. I use the Headspace app. too.

Hope this helps
 
Respect. That is a lot of miles. For you are you less likely to fit whilst active on bike or have you had one whilst moving?


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I mostly have simple and complex partials although I have had 3 tonic sz. One of those tonics was on my bike and several SP's have been on my bike. The last SP was a month ago just before descending a Canyon with a group of rider friends. It was night, full moon, the reason for the ride--see the moon from atop the canyon. My cognitive-motor processing is not reliable during or after a SP or after a CP. One of my riding friends rode next to me down the canyon.

Last weekend I rode 218 miles (two days) with a friend in the rain in Wisconsin USA. This weekend I rode 130 miles with a couple of other friends (one day) in AZ USA. No sz issues.
 
I've had post trauma grand mall from childhood. 4 episodes till college time and then went episode free for about 25 years.

I underwent bariatric surgery in Dec 2014 and then had a seizure in Jun 2016. Back on meds (Phenytoin 300 ER) and so far so good.

I cycle quite a lot. Or rather used to. Weekend 120-150 km rides and daily 50 kms rides. All that came to a standstill last year. I'm back on the saddle now, but the nagging fear, that lack of confidence has restricted my rides and haven't gone beyond 70kms in a long time.

How scared should I be? I have fellow irders who understand my condition and one with an epileptic spouse.
 
Jeevez said:
I've had post trauma grand mall from childhood. 4 episodes till college time and then went episode free for about 25 years.

I underwent bariatric surgery in Dec 2014 and then had a seizure in Jun 2016. Back on meds (Phenytoin 300 ER) and so far so good.

I cycle quite a lot. Or rather used to. Weekend 120-150 km rides and daily 50 kms rides. All that came to a standstill last year. I'm back on the saddle now, but the nagging fear, that lack of confidence has restricted my rides and haven't gone beyond 70kms in a long time.

How scared should I be? I have fellow irders who understand my condition and one with an epileptic spouse.
Click to expand...

First of all, I'm really sorry to hear about the setback. I hope you're doing ok.

I wouldn't be scared, just cautious. When I ride horses, I never ride alone, always take a phone with me, etc. It's just good to err on the side of caution.

Good luck and I hope you feel better!
 
Jeevez said:
I've had post trauma grand mall from childhood. 4 episodes till college time and then went episode free for about 25 years.

I underwent bariatric surgery in Dec 2014 and then had a seizure in Jun 2016. Back on meds (Phenytoin 300 ER) and so far so good.

I cycle quite a lot. Or rather used to. Weekend 120-150 km rides and daily 50 kms rides. All that came to a standstill last year. I'm back on the saddle now, but the nagging fear, that lack of confidence has restricted my rides and haven't gone beyond 70kms in a long time.

How scared should I be? I have fellow irders who understand my condition and one with an epileptic spouse.
Click to expand...

Jeevez, I cycle similar distances as you. Most of my seizures are focal seizures although I have had several tonics. Once I fell off my bike during one of those episodes. That fall resulted in my decision to transition from a 2-wheel bike to a trike. That addresses some of the possible concerns while cycling, but certainly not all. When I'm particularly vulnerable siezure-wise, I will have rider friends ride with me, especially on my 200 or 300km rides. I also ride on secondary roads when I'm feeling seizure vulnerable. That said, I continue to ride a lot. Finished up 2016 with 12,000mi which I believe would be about 19,000km

What kind of roads to you ride on? Speed of traffic? Condition of pavement? Bike lanes? Wide shoulders? Time of day? Consideration of the direction of your route so as not to be caught in motorist's sun blindness? Do you wear a Road ID or some other form of identification that identifies your epilepsy, contact info, and meds? Do you do much serious descending? If you have a seizure while riding but are not injured, what would you like first responders to do? I'm assuming you wear a helmet and gloves.

These are considerations that are important to me wile riding my bike/trike knowing that I am vulnerable to have a seizure at most any time.
 
Jeevez said:
I've had post trauma grand mall from childhood. 4 episodes till college time and then went episode free for about 25 years.

I underwent bariatric surgery in Dec 2014 and then had a seizure in Jun 2016. Back on meds (Phenytoin 300 ER) and so far so good.

I cycle quite a lot. Or rather used to. Weekend 120-150 km rides and daily 50 kms rides. All that came to a standstill last year. I'm back on the saddle now, but the nagging fear, that lack of confidence has restricted my rides and haven't gone beyond 70kms in a long time.

How scared should I be? I have fellow irders who understand my condition and one with an epileptic spouse.
Click to expand...

Jeevez, I cycle similar distances as you. Most of my seizures are focal seizures although I have had several tonics. Once I fell off my bike during one of those episodes. That fall resulted in my decision to transition from a 2-wheel bike to a trike. That addresses some of the possible concerns while cycling, but certainly not all. When I'm particularly vulnerable siezure-wise, I will have rider friends ride with me, especially on my 200 or 300km rides. I also ride on secondary roads when I'm feeling seizure vulnerable. That said, I continue to ride a lot. Finished up 2016 with 12,000mi which I believe would be about 19,000km

What kind of roads to you ride on? Speed of traffic? Condition of pavement? Bike lanes? Wide shoulders? Time of day? Consideration of the direction of your route so as not to be caught in motorist's sun blindness? Do you wear a Road ID or some other form of identification that identifies your epilepsy, contact info, and meds? Do you do much serious descending? If you have a seizure while riding but are not injured, what would you like first responders to do? I'm assuming you wear a helmet and gloves.

These are considerations that are important to me wile riding my bike/trike knowing that I am vulnerable to have a seizure at most any time.
 
Brighton said:
Hi
Am interested in your post. I just had seizure having been 4 years free and before that 16 years Med and seizure free. Have just got into triathlon and been road biking for 2 years am considering going on lamotrigine which neurologist recommended 4 years back. How do you find meds and training?
Click to expand...

I have been on lomotrigine and keppra for the last several years in increasing doseages. I have not noticed any impact in my training by the meds Hope this helps.
 
bka1212 said:
Hello

I am an avid athelete. Between the gym, yoga, running, and sometimes crossfit.. I have actually found that when I keep up with an actual "routine" it lowers my seizure activity. I want to attribute it to the fact that I am just exhausted and sleep great as well as being physically and mentally fit.

I don't have any insight into the 02 aspect but I really believe in the routine part. same time, same med and sleep schedule, eating healthy.. it all adds up.
Click to expand...

I find that I really must ride my bike nearly every day. If I don't I am more vulnerable to seizures. For many reasons I am not able to enjoy the variety of athletic endeavors you are. Wish I could. But, what I am doing is working for me.
 
saw young weight lifter had really bad e.trainer took him under his wing and he hardly has them anymore.HE feels aura but with great determination he aborts it..documentary on tv
 
All I can is WOW! What I do know is there are "a lot of ways in", into recovery, into how to manage our seizures, and more.
 
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