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Fighting back against epilepsy: One woman’s success story

Karen Hawthorne is a health and lifestyle writer and producer in Toronto, Canada. Her work has appeared in print and online for publications including Glow, Homemakers, BestHealthMag.ca and the National Post.

National Epilepsy Awareness Month

Alysse Mengason of Birmingham, Michigan, had a grand mal seizure in her sleep and went into a coma. When she woke up she had no idea what had happened, but she fought her way back to a fulfilling life, and blogs the trials of living with epilepsy at BrainThunders.com. Here is a Q&A with Mengason for National Epilepsy Awareness Month this November.

Alysse MengasonSheKnows: After intense therapy, you regained much of your balance and cognitive function, but still experience as many as 15 seizures per week. What happens during a seizure?

Alysse Mengason: I can have the tiniest little episode that lasts for seven to 10 seconds, where I just get dizzy and lose my ability to speak. Or I can have an episode that lasts about 30 seconds; I get very heavy-headed, I can't remember the simplest of things like my husband's name or my daughter's name. I literally lose my ability to speak. My grand mal seizures don't occur often, but I do have what's called an "aura." I have about a five-second warning where my head begins to spin, I smell sort of a metal scent and I black out completely.

SheKnows: How do you deal with seizures?

Alysse Mengason: I have tried at least a dozen anti-seizure drugs -- one drug at a time or a combination of medications. I've tried the ketogenic diet -- a high fat, low-carb diet that's been proven to reduce seizures. I've also made two attempts at surgery in two different hospitals. Single-drug therapy was the way to go because I wanted to limit my side effects.

Alysse MengasonSheKnows: How has VNS therapy, where a battery-operated device implanted in your body sends signals to your brain to stop seizures, helped you live a more "regular" life?

Alysse Mengason: Because I've reduced the amount of seizures, I feel better. The VNS was recommended to me by my doctors after my second attempt at surgery failed.

SheKnows: How do you manage the day-to-day?

Alysse Mengason: My life is incredibly scheduled and disciplined. Because of this, my daughter and my husband are very scheduled! I don't drive, so my errands are done at designated times when I do have help. Our daughter is involved in various activities, and I have a very specific plan on how we get to where we have to go, whether it's with our babysitter or my mom -- transportation is something many people take for granted. I've worked hard to build a small team of family and friends who help me now and then.

Alysse MengasonSheKnows: Can you improve your memory function?

Alysse Mengason: I write a lot down. I try to stay very organized and on top of current events. News will spark my memory. I also try to take good care of myself. Social media helps, too. I can connect with old friends on Facebook and in just a few lines they can remind me of things I can't recall.

SheKnows: What's your key message for people with epilepsy?

Alysse Mengason: Be your own advocate. Take your prescribed medication, avoid seizure triggers, make sure you find a doctor you are pleased with and work to form a great relationship. Keep up on epilepsy news and whether it's virtual or in person, make sure you have a support system.

For more information on epilepsy, visit BrainThunders.com.

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