Running with Epilepsy

I was asked last week by a coworker how running affects my seizures. I’ve been asked this before and don’t always give a very good response. I pause and then stutter out something along about reducing medicine side effects and such.

I decided that I needed to actually take some time and examine “how does running affect my epilepsy” really. Once I did that I could actually give a coherent (and truthful) response.

I had to go back to my journals to find the beginning as I didn’t really keep training logs when I first started running. According to my memory and journal corroboration, I started jogging in place in my kitchen in the wee hours of the morning because I felt fat and lazy. I was tired all the time and figured maybe some early morning movement would wake me up. If nothing else I would burn off some calories. It couldn’t hurt.

I was having about 3-4 seizures a month. My medicine was causing me memory issues, fatigue, shaky hands, and headaches…or maybe the seizures were. I couldn’t really tell the difference. I was also off and on depressed and angry.

I got up at 4 each morning and pulled on some sweatpants and jogged in place for 10 minutes…then 20….then 30… When I made it to an hour I started running laps. Yep, I ran laps in my kitchen. I counted each lap and pretended I was on a track. I would sprint and then jog and sprint again. I was pretty sure I was awesome.

How did the journal match this? The seizures were still happening at 3-4 times a month. I didn’t really add anything in the journal other than ‘the usual, guess I had a seizure, whatever’ so I’m not sure if they were any better or worse. I can say that in month 4 of this kitchenjogging—I didn’t call in to work after a seizure for the first time. What does this mean? Was the seizure milder? Was it from the exercise?

I snuck outside soon after I started the kitchen-lap running and ran up and down the sidewalk in front of the house with no shoes. Anytime a car would come by I’d quickly slow to a walk and pretend I was just strolling along because I was pretty sure I looked stupid running. Then I’d burst back into a run. It felt amazing to be outside and have room to go forward for a decent distance after being stuck in the kitchen. I got frequent “Hey Hippie, where’s your shoes?” honks and hollers, so I must have looked funny anyways. Go figure.

I signed up for a 10K—Get in Gear to be specific. This is when I had to tell my family that I was “running.” I waited for the laughter but it never came. I’m pretty sure they didn’t believe me though because really? Me running? Right. The family and I hit the local running store because if I was going to run, I needed some of those fancy running shoes. I was pretty stunned at the offerings. They were big…and heavy. I had gotten used to running with just my feet and everything I tried on felt really clunky. I left the store dejected. I would never really be a runner.  I chose for a while to keep trotting along in my bare feet until foot issues came up and I moved to minimal shoes (a whole nother story!).

The journal…. Huh, still 3-4 seizures leading up to the 10K but something interesting here. I still whined about badass headaches but I stopped calling into work after every seizure and now approximately half were ‘call-in worthy’ and half for some reason weren’t.  Before running 100% were call in.  I can say that now 10% are but we’re not there yet are we?  Is it the running?

I ran in the Get in Gear 10K in April, 2010. Can I just say real quickly that that was amazing? I was absolutely positive that everyone out there was cheering for me and every photographer was snapping a picture of me (imagine my disappointment when I found out that wasn’t true!). I ran with a permagrin and waved at everyone! I’ve never recaptured that feeling though I chase it every time I race.

In 2010 my seizures sat steadily at 3-4 seizures per month with a 50% call in rate. I continued running and took the running outside all the time and increased the mileage after Get in Gear aiming for something bigger.  In 2011 I ran in 36 races ranging from 1mile to half marathon and ran 5 days a week. I was obsessed and chronically injured. My seizures were 2-3 times per month. This could have been due to the running or a new medicine I had added to my arsenal of drugs. My call in rate at work still hovered at 50%. I was no longer napping at work. This was a new bonus (that was a side effect from medicine that it seems running was wiping out). I was also pooping regularly- another bonus that I guess running causes? My journal entries were happy 95% of the time. I had changed. For the better.

In the beginning of 2012 received a diagnosis of osteoporosis and had to rehab a broken foot that took me out of running for nearly 8 weeks. I ran in 29 races ranging from 1 mile to half marathon and ran 4 days and cross trained 2 days a week, falling into a good groove of injury free running after the broken foot incident. Seizures? 1-2 times a month. Was it the new medicine…or the running? Was I eating differently? Call in rate: 20%; Journal entries were nearly all positive.

2013—this year. My seizures remain at 1-2 times a month. I’m happy. I’m not tired and don’t feel fat. My call in rate? 10%.

So we get to Running with Epilepsy…how does it affect my seizures?

Seizures are exhausting. Most people only know about the ‘ictal’ part of seizures—the seizure itself. There are actually four stages in epilepsy…pre-ictal, ictal, post-ictal and inter-ictal.  Inter-ictal is where I sit most of the time. This is the time between seizures, the good time. Where I swallow my rainbow colored pills and do my thing. My brain is, for the most part, behaving. Pre-ictal is the part before the seizure and sometimes is part of the seizure but conscious so it confuses me as to what exactly it is. I’m not a doctor so excuse my definition of it. I’ve started to actually ‘somewhat’ figure out days that might end with a seizure by keeping a journal. A theme is there so pre-ictal (for me) includes irritability, sensitivity to loud noises, headache, indigestion, and the feeling of a body rash with nothing at all being there. Obviously the ictal phase is the actual seizure. My seizures are weird. I used to have the ones you see on TV- you know, shake, turn blue, omg! Well, luckily medicine put the squelch on those because they are mean. Unfortunately, they were starting in my temporal lobe and the start of them wasn’t squelched entirely so the ‘start’ still happens. That seizure is weird. It’s called a partial complex seizure and IT starts with a simple partial seizure. You’re learning something here, right?  So did I because I didn’t know!

I get the feeling of my stomach rising. Picture going down a roller coaster really, really fast- that feeling. Very shortly after that, every single noise that exists in the entire effing world gets so LOUD that it is intolerable. Including ME. I get so loud. My breathing and heartbeat…everything.  If someone talks or whispers it is unbearable. The world goes on amplification. It echoes in my head and bounces around and I want to tear my ears off. It hurts. And then I go blank. I used to think I fell asleep. I used to think I was going nuts or having bad dreams because WHAT THE HELL IS THAT? Apparently during my ‘blank’ I pick, chew, or randomly stiffen up on my right side. And then it’s over and I don’t remember anything at all.

Next comes the post-ictal state. This part sucks the most I think. I wake up groggy and stupid and confused. It can last what seems like a long time. It’s like shaking cobwebs out of your brain (keeping in mind that your ear and nostril holes are little and cobwebs are sticky). Sometimes there’s a massive headache, sometimes not but there is always stupid. Always. The stupid lingers for up to a day afterwards. It’s frustrating because I’m smart and can’t form sentences and forget the simplest of things. I’m usually tired and if I did the stiffening thing, I’m sore and don’t know why.

How did running affect all of this? My inter-ictal phase is longer according to my journals and my post-itctal phase has become dramatically shorter. I used to call in to work after every seizure due to the after seizure funk. I don’t need to anymore. In fact, I’ve only called in for 1 seizure out of the last 8 due to being able to work through the after affects with sleep + Advil.  While the decrease in seizures from 3-4 down to 1-2 could have been the addition of the new medicine, the post-ictal change was definitely a benefit of fitness.   The other obvious trend has been my mood. I’ve been able to see things through rose-colored glasses since I started running. Part of this is the running and part of it is the gain of a social life. The running community is amazing. No-one cares that I can’t drive or sees the epilepsy as a hindrance. No one says I run ‘stupid.’ The social aspect of running has been a confidence boost and thus a mood boost. The ability to run has been a mood boost. You add the endorphins from the actual run and you get the trifecta of BAM AWESOME MOOD! I’ve gone from hiding in my house and dragging myself to work, to being the annoyingly happy worker who goes also to school and babbles uncontrollably about running!

So, Running with Epilepsy—how does it affect my seizures?  In the long term, it has made recovery faster which in general has made me a healthier and happier person. Enough said.

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3 thoughts on “Running with Epilepsy

  1. So glad I saw this, very interesting to read… and quite the journey you’ve been on.
    Yay for running sanity and awesome social life!! 🙂 xoxo

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