Endurance Athletes With Epilepsy

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bentwanderer

bentwanderer

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I was diagnosed with bilateral complex partial temporal lobe epilepsy 19 months ago. I have participated in endurance cycling for 12 years; I ride 250-300 miles per month (12,000 mi/yr). Was wondering if others of you are endurance athletes with epilepsy and what you have found helpful or concerning about the combination. So far I have had no untoward experiences I have not been able to manage.

Susan
 
The biggest athletic challenge I have faced down was climbing Mt. Kilimangaro a couple of years ago. It was fairly easy except for the last day which involved a 3000 foot elevation gain push to the summit at 19,340 feet. That was tough.

But I don't think it was any different for me than it would have been for anyone else. I trained for it and had the right gear so I was fine.
 
Thanks Alohabird for your response. Congratulations on your summit of Mt. Kilamanjara. Huge accomplishment, huge mountain. Not much O2 at 19,000+'.

I erred in my originL statement: I ride 250-300 miles/week (not month) for a total of 12,000 miles/year for the last 10-12 years. Only had epilepsy for less than 2 years. Managing fuel, fluids, and electrolytes is a science for anyone doing endurance or ultra distance, but I think those can all be triggers for people with E. So far they have not been triggers for me, thanks goodness. That said, my seizures are not yet stable. So, just looking for other endurance folks' experience
 
I was just talking with another poster on another thread about the O2 aspect of serious training. The best seizure control I've had in 30 years was when I was in Kili climbing condition. I think it has something to do with lung capacity and the ability of the body to grab the O2 efficiently from every breath. Seizures can often be triggered by lack of oxygen getting to the brain.

Your being in that kind of aerobic shape will only do good things for your seizure control. I came home from Africa and then spent the next few years taking care of my Dad and let myself get all kinds of out of shape. But I'm working on building it back up.

I love your recumbent bike BTW. That looks like a very comfortable way to ride.
 
I run alot, though not ultra endurance levels (more like half marathons), and the biggest thing for me is to be hydrated and keep electrolytes in balance as you mentioned. Other than that, I've found my exercise has coincided with my longest stretch of being seizure free, so I believe it be a great benefit and help to those with E on the whole.

I had a doctor speculate about a seizure I had once a day after a long run, and honestly it made me mad that he would say they might be related when he was just spitballing. I didn't want any doubt to creep in and affect my exercise habits . He did admit he was just speculating, and since it had been my first generalized seizure in 8 years, I took his speculation as just that. He later said based on my history not to worry about it.

That said everyone is different but, I think you would have noticed it a problem if it was going to be one for you.

I would just keep doing what you've been doing and monitor yourself for anything unusual, but again, I would just make sure you have proper nutritional and hydration habits, so as not to overstress your body in general. I think exercise is beneficial for your brain.
 
Alohabird, I am relatively new to this epilepsy world-only 19 months. No truly discernible triggers, but I have been seriously thinking O2 may be a key factor to address. Can you point me to the other thread about O2 you referenced?

After I have my video EEG sometime in the next couple of months I plan to begin some home-based O2 therapy. My doc will write a script for an O2 tank. I'll do some experimenting to see how many liters works best and when. Currently thinking I'll run 4 liters of O2 per mask for 30 minutes daily. After a sz I plan to run 6 liters 2x/day for 30 minutes to see if I can hasten the post Ictal wipe out.

Re: my recumbent, yes, a delightful way to ride. Did two transcontinentals West to East across the USA under 30 days on my bent at age 60 and 63 (69 now).
 
Dignan, thanks for your comments. I live in AZ so quite hot here, but not humid like in TX. I do a good job with the fluid and electrolytes. I use Hammer Nutrition Products primarily. I agree with you that I feel best when on the bike, head wise, medication depression wise, etc. I have had 3 simple partials when on the bike. Once I had to call my husband for a pick-up as I had some significant cognitive-motor disconnection and I didn't feel safe riding on the only heavily trafficked road. The other two times I was able to re-route myself to safe roads and multi-use paths.
 
I used to be an avid runner, although not endurance (usually between three and six miles since I used it for horse endurance training), which I hope to take up again this summer and I "skirt the margins" of endurance horseback riding, which is what I truly hope to do once I am done with grad school.

As mentioned above, stay hydrated. Additionally, I bring some type of nutritional bar during the ride. I take my medications at a very specific time (9 AM and 9 PM), which means they have to stay with me, but it's also a good thing in case I were to have a seizure on the horse and someone needed to know why I was having a seizure. I also notify other people than the person I am riding with that I am epileptic. I change out my helmet often because they don't last forever! I also sometimes ride with a safety vest-- I think that might impair cycling, but it is a thought.
I am also never alone. I actually think that this is imperative. Yes, a phone can help, but it can only help so much. In fact, while my epileptologist encourages the horses, he does ask that I ride with someone.

Lastly, I noticed that my particular AEDs caused me to lose some muscle, which did affect my endurance overall and when I switched medications I became very sensitive to heat when I wasn't before. I had to quit running for a while because I would get quickly overheated. Ha, now grad school is the culprit. I think it's good to be aware of side effects and note if you've been incredibly active and had high endurance and suddenly something does change. Hopefully your neurologist will work with you since they should in order to maintain your lifestyle.
 
Garbo,

Which drug caused you to lose muscle and which one caused overheating issues?
 
bentwanderer said:
I have been seriously thinking O2 may be a key factor to address. Can you point me to the other thread about O2 you referenced?
Click to expand...
It was on the thread "My Personal N=1" where I am exploring various alternative treatment options.

Mr. T21 was talking about swimming laps for time and how that was helping him. MAB was talking about her rebounder workouts and how that helped her go from a serious case of COPD to only a mild one after making the wise decision to ditch the cigs. I though about my training for Mt Kili which included a lot of interval training, wind sprints and such. The common denominator seems to be lung capacity and O2 absorption.
 
Dignan said:
Garbo,

Which drug caused you to lose muscle and which one caused overheating issues?
Click to expand...

Topamax. It worked really well for seizure control and migraines for several years, but it felt like it knocked the wind out of my sails. I went from running six miles and riding several hours four days a week to barely being able to run a mile. And that was after over a year on it. Between the inability to tolerate heat and the weird muscle issues, it was a rough drug. I'm now only on 50 mg at night, plus a few other drugs which I hope won't have as many side effects.
 
Interesting. Must have had a complex partial today as took a fall off my bike. No other explanation than a sz. Very low speed as pulling in for a pit stop. Bike's ok, bod's ok, but implications are a bit scary.
 
bentwanderer said:
Interesting. Must have had a complex partial today as took a fall off my bike. No other explanation than a sz. Very low speed as pulling in for a pit stop. Bike's ok, bod's ok, but implications are a bit scary.
Click to expand...

Maybe tone it down for a bit? Common triggers for lower seizure threshold is being tired and stressed..
 
Endurance Athletes and Epilepsy

Garbo said:
I used to be an avid runner, although not endurance (usually between three and six miles since I used it for horse endurance training), which I hope to take up again this summer and I "skirt the margins" of endurance horseback riding, which is what I truly hope to do once I am done with grad school.

As mentioned above, stay hydrated. Additionally, I bring some type of nutritional bar during the ride. I take my medications at a very specific time (9 AM and 9 PM), which means they have to stay with me, but it's also a good thing in case I were to have a seizure on the horse and someone needed to know why I was having a seizure. I also notify other people than the person I am riding with that I am epileptic. I change out my helmet often because they don't last forever! I also sometimes ride with a safety vest-- I think that might impair cycling, but it is a thought.
I am also never alone. I actually think that this is imperative. Yes, a phone can help, but it can only help so much. In fact, while my epileptologist encourages the horses, he does ask that I ride with someone.

Lastly, I noticed that my particular AEDs caused me to lose some muscle, which did affect my endurance overall and when I switched medications I became very sensitive to heat when I wasn't before. I had to quit running for a while because I would get quickly overheated. Ha, now grad school is the culprit. I think it's good to be aware of side effects and note if you've been incredibly active and had high endurance and suddenly something does change. Hopefully your neurologist will work with you since they should in order to maintain your lifestyle.
Click to expand...

Garbo, thanks for the helpful info. I think I've got the fluid, fuel, and electrolyte thing down. I do most of my miles solo; prolly 80%. Try to find a balance of riding roads that are secondary or tertiary, rather than super trafficked. On my 100-200 mile rides people know my route, I'll text my progress or post on the cycelmeter app so key people know exactly where I am. Of course helmet always. Certainly am losing muslce mass in my upper body, but have attributed that to age (69). Was not aware that could be impacted by meds. I'll keep that in mind. Muscle mass in my legs is better than ever and watts power is better than ever. Recently completed 200 miles in 12 hours elapsed time which speaks to the O2 capacity and utilization. Will be implementing home-based O2 therapy program to improve O2 capacity and hopefully hasten the post-ictal periods.
 
Endurance Athletes and Epilepsy

George__ said:
Maybe tone it down for a bit? Common triggers for lower seizure threshold is being tired and stressed..
Click to expand...

Not aware of being either stressed or tired. This is my daily life. I'll take a look at it though.

Susan
 
 
Many thanks for these links. Hopefully when I have my VEEG in a couple of weeks both hyperventilation (CO2) and O2 will e used to look at their triggering or suppressing effects on my seizures.

Susan
 
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