Addendum to my interview on the homepage

You may have read the interview Dev Paul did with me on the ST homepage. Today I started in the Toronto Goodlife Marathon. The result was a stark reminder of the fact that I still am not fully healed and that the road to full health is long and unpredictable.

As I mention in the article, I suffer from epileptic seizures. While they are not fully controlled yet, things are getting better, and more importantly, I’ve never had any episodes while running. Until today, causing me my first DNF in my “illustrious” career.

The first third to half of the race was unremarkable, except for the fact that like a true marathon rookie I went out to fast. My goal was 3:15, which translates to 4:36/km (7:25/mi), and the first 8km (5mi) or so I did between 4:20 and 4:25 (7:00/mi). Pretty stupid. I started paying the interest for that between 10km and the halfway mark, which I reached at 1h 38. At that point I realized I wasn’t going to negative split and so I reset my goal to 3:20 and comfortable 4:40-4:45 kms (7:35/mi). That went well until km 27 (mile 17) or so. At that point the course reaches the finish area, which is on Toronto’s lakefront, the city’s main recreation area.

There were a ton of people there, people cheering, announcers announcing, music blaring, etc, etc. After passing the finish area there’s a 14km out-and-back along the lake, on a busy multi-function trail. When I hit the trail I noticed that my pace had dropped to 5:15 (8:25/mi). Over the next couple of kms the craziness increased, with rollerbladers swerving between racers, cyclists coming up from behind and up ahead, and bands playing every km or so. My pace kept dropping to about 5:30 (8:50/mi). At km 31.5 (mile 19.5) I suddenly just stopped. I didn’t consciously decide to stop, but my body just stopped. I felt some shit stirring in my brain, but did some breathing exercises and walked for maybe 200m. I felt better, the fuzziness in my brain seemed to have passed, and I started running again. About 1km later however, I saw some volunteers, and again unconsciously, I ran up to them, pointed to my bracelet which indicates I’m an epilepsy patient, and told them stuttering I needed first aid. I collapsed onto the ground and seized.

The volunteers at that point turned out to be a group of 15 year olds, one of whom had taken his first first aid course last month. He took charge, and that was good. Seeing somebody seize is a scary experience I hear (never seen it myself), but the guy handled it well. His friends at first thought I was suffering from heatstroke and started bringing water and Gatorade etc, and when they realized it wasn’t that they wanted to call 911 (which I declined, since it serves no purpose). A police officer showed up, ordered me to sit in the shade, and left. I seized again. In the meanwhile we were waiting for a ‘medi-van’, vans staffed by registered nurses patrolling the course. One of them finally showed up, but after taking me on board was ordered all over the course to collect people. I seized again. When they were finally at capacity, we made our way to the finish area and the med tent. Initially they could only get to a road separated from the med tent by a fence, and all other occupants fled the van at that point. I wasn’t allowed to. The race’s medical services coordinator had to come out and tell the security people that no, this was not an EMS vehicle but yes, it had to go to the med tent. There a doctor assessed me, I surprised him by declining the IV, and I was allowed to leave after they determined that my temperature was not elevated and my blood pressure was normal. I found my wife about an hour and ten minutes after she was first called.

Thinking back I think that my brain told me when I got to the waterfront park that I could either stress it by running hard, or by dealing with all the distracting nonsense. Since the nonsense wasn’t going away it stopped me from running hard, and when I kept overloading my sensory system it sent me into seizure. I don’t think my fitness was the issue; the 4:45s were comfortable before, and now, back home, I feel I ran quite hard today but I’m not trashed. This was clearly a neurological event.

The conclusion I’m drawing now is twofold. One is that marathons, or generally events over say 2 hours in length, are to taxing for my brain. Second is that I should stay away from huge events with lots of stuff going on. I think I’m going to concentrate the rest of the season on getting my 10km under 40, and maybe next year, if I feel like it, see how my brain deals with longer stuff with training for the Waterloo Marathon here in town. This is a very low-key event ran on the roads I train on.

One last shout-out to the volunteers and medical staff at the Toronto Goodlife Marathon today. While things maybe could have gone smoother, everybody did their utmost to get me back to safety as soon as possible. Thanks guys.

Jan - Very sorry to hear of your DNF but it sounds like you survived OK. I’ve had 4 bike accidents (in 27 yrs) that put me in the hospital but none as bad as yours, i.e. no brain damage or injuries that I could not recover from. However, I’m basically a swim/run athlete now, with just the occasional (e.g., once a month at most) bike ride. Good luck with your continuing recovery.

…very sorry to hear about that seizure episode, Jan. It’s pretty misfortunate.

I checked your results as soon as I came from from the marathon myself, and when i saw the DNF, I just prayed you were OK. I didnt have a great day myself and missed my goals, but stupid GI issues are nothing compared to your situation.

Hope you recover fast. As for the noise/distractions during the downtown part, you mentioned music works to keep you focused…have you tried running with headphones to try and tune other things out?

Wow. Scary. Glad you made through safe. It’s good you are taking a step back and reassessing. Hopefully time will help and a change in strategy.

Jan…you are inspiring many. This is not a failure, this is a start.

A few points. As you know, I had a fairly traumatic head injury. Congestion on run courses, coupled with blaring speakers and a lot of sensors make everything hard. Add to that low blood sugar during races, and our brains are on the “edge”. As I told you at Tremblant 70.3 last year, I could not even handle the announcer at the beach start. I could not deal with the loud speakers in transition before the race, and the loud music. I just needed my personal space and some silence. It does get better over time. Hang in. You likely never ran 33K that hard with that low blood sugar, so it is not surprising that your brain was on the edge of its tolerance limit. It is even for an uninjured human. Don’t feel deflated, you accomplished a lot today. I know it seems like one step forward, 2 steps back TODAY, but eventually it will not. You are a brave guy for even putting this very private story out to the public, and many many people will benefit from your openness.

Let’s catch up next week. I’ll call you when I get back to Ottawa. Lean on your community. We are here to help each other.

There’s a lot of great lessons in your story, for you and for us. Thanks for taking the time and giving the effort. Don’t rush to get back out there. But, if you do, I’m waiting for that story too.

Sorry about the dnf. (Het spijt me voor jij).
many hugs.

Glad you are OK.

Just heard that an 18 year old girl has collapsed and died at the race…

Glad you are all right.

On a related note, there may be hope in the future, scientists have apparently been able to control/cure epilepsy in mice: http://www.science20.com/news_articles/mge_brain_cells_transplant_cures_epilepsy_mice-111185

John

Glad you’re ok, Jan. I guess it’s a continual learning process, each case being unique. We all find our limits, hopefully in a manner that doesn’t threaten our health. It’s easy to pass off people who are less able, but we are all better off, regardless of our level of performance, for being there and doing it. I hope you’re able to keep doing it. Best of luck to you.

Sorry to hear that man. As you already know, my son also has epilepsy and although he is just about to turn 4, he is obsessed with running. His advice to you:

take your medicine and run faster. Because he takes medicine and runs the fastest and isn’t having any seizures now.

So there you go, some sage medical and race advice from a toddler.

Hang in there man!

Just heard that an 18 year old girl has collapsed and died at the race…

Yeah, when I was in the medi-van there was a lot of frantic radiotalk about a runner down at the 40km mark. They initially wanted one of the other medi-vans to go there, but later they withdrew that, probably because EMS was needed. There also was a lot of chatter about a runner down at Lakeshore and Fort York, and that must have been the cop that had the cardiac arrest and was resuscitated there.

blitzkrieg mentions that his GI issues were put in perspective by my story, but things like 18 year old HS runners from running families with multiple half under their belt keeling over and dying puts my silly seizures in perspective.

…very sorry to hear about that seizure episode, Jan. It’s pretty misfortunate.

I checked your results as soon as I came from from the marathon myself, and when i saw the DNF, I just prayed you were OK. I didnt have a great day myself and missed my goals, but stupid GI issues are nothing compared to your situation.

Hope you recover fast. As for the noise/distractions during the downtown part, you mentioned music works to keep you focused…have you tried running with headphones to try and tune other things out?

Thanks for the prayers. as I mention in the other post, I now feel pretty silly to whine and complain knowing a seemingly healthy 18 year old just died, and another person having a cardiac arrest. That puts a seizure in perspective…

I’ve run with earbuds before, but I’m somewhat paranoid about not hearing things and being run over again. So I like to keep my ears free. but we’re investigating noise-cancelling headphones for noisy situations in daily life.

Jan…you are inspiring many. This is not a failure, this is a start.

A few points. As you know, I had a fairly traumatic head injury. Congestion on run courses, coupled with blaring speakers and a lot of sensors make everything hard. Add to that low blood sugar during races, and our brains are on the “edge”. As I told you at Tremblant 70.3 last year, I could not even handle the announcer at the beach start. I could not deal with the loud speakers in transition before the race, and the loud music. I just needed my personal space and some silence. It does get better over time. Hang in. You likely never ran 33K that hard with that low blood sugar, so it is not surprising that your brain was on the edge of its tolerance limit. It is even for an uninjured human. Don’t feel deflated, you accomplished a lot today. I know it seems like one step forward, 2 steps back TODAY, but eventually it will not. You are a brave guy for even putting this very private story out to the public, and many many people will benefit from your openness.

Let’s catch up next week. I’ll call you when I get back to Ottawa. Lean on your community. We are here to help each other.

Thanks Dev, both for your kind words here and on FB.

I couldn’t sleep yesterday night so I started to research the links between hypoglycemia, seizures, and epilepsy. It turns out that hypoglycemia can give you seizures, but that that’s usually the final step before death. I wasn’t quite there yet :slight_smile: I also didn’t have any of the other symptoms, and I drank gatorade pretty diligently.

But then I found that hyponatremia can also trigger seizures. And I had some of its symptoms (swollen fingers). And I found out that my medication messes with my electrolyte levels. And I realized that my friends were commenting on the insane amounts of salt crystals on my face yesterday afternoon (I scraped about half a teaspoon from one area alone). Of course, given that the science of electrolyte management in healthy people is far from settled, there’s nothing to be found on what it does to epileptics on Keppra running marathons… But there could be a link there.

Sorry about the dnf. (Het spijt me voor jij).
many hugs.

Thanks TC… I’m still working on that shipment. Really!

And a nitpick: “Het spijt me voor je”, not “jij”. :slight_smile:

Glad you are all right.

On a related note, there may be hope in the future, scientists have apparently been able to control/cure epilepsy in mice: http://www.science20.com/...epilepsy_mice-111185

John

Thanks John.

Read the article. What I don’t understand, but that’s just probably me not grasping the lingo: how did the mice end up with epilepsy???

Sorry to hear that man. As you already know, my son also has epilepsy and although he is just about to turn 4, he is obsessed with running. His advice to you:

take your medicine and run faster. Because he takes medicine and runs the fastest and isn’t having any seizures now.

So there you go, some sage medical and race advice from a toddler.

Hang in there man!

I need a coach. How much does he charge?

:slight_smile:

Thanks all of you for your support!

What I don’t understand, but that’s just probably me not grasping the lingo: how did the mice end up with epilepsy???

I don’t think the article said (I skimmed it). Frequently, medical research with mice involves breeding mice with the “desired” condition. Jackson Labs (one of their locations is on the island I’m from :slight_smile: is the leading mouse-breeding lab in the nation, if not worldwide. A “black six,” the control mouse, is several hundred dollars… they’re pricey little things. Mice are bred with cancer; there are obese mice (little buggers look like hockey pucks) - so I suspect somehow, they “gave” the mice epilepsy.

Sorry to hear that man. As you already know, my son also has epilepsy and although he is just about to turn 4, he is obsessed with running. His advice to you:

take your medicine and run faster. Because he takes medicine and runs the fastest and isn’t having any seizures now.

So there you go, some sage medical and race advice from a toddler.

Hang in there man!

I need a coach. How much does he charge?

:slight_smile:

I usually pay him in snacks and cartoons :slight_smile: He’s not a bad coach either. He keeps me honest. When I push him in the jogger on my runs he constantly yells at me to go faster especially up hills.

Get that keppra dialed in with constant communication with the dr. When my son started out on it his dr kept upping the dose until his seizures subsided. Hopefully you get there soon!