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Cycling with Epilepsy

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Halley was featured earlier this year in the Motivational Monday series. I personally pulled a lot of inspiration from her and asked her to write an article for BSG on cycling with epilepsy. Give the article a read and then visit her blog to follow along her journey.

When you are triaged at the emergency room or picked up by the ambulance after a bicycle crash involving no other vehicle, the intake paramedic or nurse will write “FDGB” on your form. What super official medical term does this acronym mean? “Fall Down Go Boom.” It does get the point across, at the very least.

In 2009, I was going to the emergency room approximately every six to eight weeks for similar reasons. Part of it I was cycling more so naturally I was on my bike versus say in my apartment or walking. It made me a prime candidate for tipping over randomly. A few crashes I just stood up and dusted myself off, but several of them were pretty epic with full facial road rash, splayed out in the middle of road and no memory of how I actually ended up there. That last part was the most unsettling of the entire affair.

That’s when they sent me to a neurologist. It seemed that I had been what are called “absence seizures.” Chances are that I have been experiences them for a long time in my life and have never noticed them. I kind of freak out when I think of this, because I have driven a car a lot in my life and worry that I could have been driving when this had happened. Earlier in life, I would go into random crying fits that had been misdiagnosed as “hypoglycemia.” I very distinctly remember not being able to look at restaurant menus and see the words or formulate thoughts. The neurologist informed me that I was most likely experiencing what was called a “simple partial seizure” and having had them recently, I can attest all the orange juice and glucose tablets in the world won’t help, so while yes they do look like a low blood sugar crash, they are indeed not.

I had my first “grand mal seizure” during a bike ride in downtown Portland and hit a park bench. This was an extremely difficult and stressful time for me. I felt like my brain was trying to kill me. All I wanted to was live a car-free lifestyle, work at the women’s homeless shelter and continue my own business as a professional harpist (with a custom-made bike trailer for my full size folk harp). You know, the typical Portland Oregon lifestyle, right? I couldn’t really live that when I was riddled with migraines, my weight massively fluctuating from trying out new medications – and I already suffered from an overweight awkward childhood so this new struggle was just one more thing to add to my plate.

My neurologist and I struggled to deal with my daily migraines so that I could ride my bike again without the threat of seizure and we couldn’t figure it out until I came across something she didn’t think of. Allergies. I knew I was allergic to a few medications and chemical products, but in addition to them, I added gluten, lactose and egg to my list. Having a very severe latex allergy, I had never realized that banana or avocado were part of the same family, which while I loved and are very beneficial to most diets, unfortunately for me, they cause more harm than good. Cutting them out as well, cleared so many skin issues. It was actually about that time, 2010, I “went vegan.” I had already been eating mostly vegetarian due to the lack of dairy and egg products. My body has never processed red meat well and I don’t eat pork, so it was a pretty natural transition. The most difficult thing for me to break up with was gluten. Total carbitarian.

I want to smack myself in the forehead because it sounds so stupid writing this. You cut out the stuff that you’re allergic to and you stop being sick. I’m not a nutritionist, not giving you nutritional advice and I can only write what worked for me. And, let’s be honest. I still have seizures. It’s not all about food. But I did lose 70 lbs in less than a year, which I am sure was mostly because I was putting crap in my body that couldn’t be processed and broken down.

There are the good days and the bad. I have worked really hard to get to where I am. Charting when I have seizures. I have been on a bunch of different types medications that haven’t worked for me or that I have “grown out of,” meaning that dosage is at such a high mg that any more would be toxic so the doctor either has to supplement a different medication or change medications. There are literally dozens of different kinds of epilepsy that affect the brain. Mine is called progressive myoclonic epilepsy. In short, it means it’s going to get worse in time, but right now it’s really well controlled.

I love cycling and it’s my life. I ride with a primarily road racing team here in Portland, though my passion is cyclocross. I haven’t been able to race the last two years due to health reasons. My knee went out two years ago and I had foot surgery last year. This was related to a back fracture I had six years ago. Ironically related to the dysfunction in my right cerebral hemisphere, which causes discrepancies in motor skills, visuo-spatial, perception and coordination. Basically I FDGB. I am definitely looking forward to this fall and getting muddy.

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