Amy Mittinger enjoying life at a Harlem Globtrotters game
From the editor of Insightsintoepilepsy: Amy Mittinger has joined our blogging team and will be blogging about her life and epilepsy. Amy is a recent OSU graduate, and we look forward to reading about her thoughts, feelings and experiences as she enters into her professional life. In this Blog, Amy reminds us that we are in control of our medical conditions. In sharing her experience she wishes to emphasize that she is not advocating any particular course of treatment. Are you in control of your epilepsy treatment? We invite you to share your experiences by leaving a comment to Amy’s blog. For more information about epilepsy visit our website: www.epilepsyinfo.org
I was diagnosed with epilepsy during my sophomore year of high school in fall of 2005. Talk about a shock. I was an A student and healthy athlete who took care of my body via exercise, healthy eating, and abstaining from anything harmful or dangerous.
But my life changed that Labor Day weekend, when I felt “weird.” Weird is the best term to describe the temporary spurts of feeling physically astray from the world around me. These spurts turned out to be simple-partial seizures. They were classified as “simple partial” because they were just that: very faint, or simple, and only affecting part of my brain. (The left temporal lobe, to be exact.) They never caused me to lose consciousness, fall, or otherwise suffer from sickness or pain.
That’s the beginning of my story. The middle is a long narration of medications, medical trials, illness, and the continuation of seizures through it all. I was a patient at Cleveland Clinic four times total — the first three for a week of monitoring each time, and finally the fourth for surgery. After some consideration and debate, I went ahead with this procedure in summer 2008 after my high school graduation that spring.
The surgery was a left temporal-lobectomy, or the removal of my left temporal lobe — the part of my brain where seizures occurred most. And it was beneficial. It didn’t eliminate the seizures, but greatly reduced them to 1 or 2 per day, down from about 15 per day. So I wasn’t complaining. I was thankful as ever. But I remained curious of ways to reduce them further.
I remained on medications, and plenty of them, since the beginning. Probably 10 total, and up to four simultaneously. Medications were almost an entirely separate problem. I swallowed pills that caused nausea, fatigue, shaking, sensitivity to smells (which did, and still does, cause seizures in itself), and everything in between. I remained on two medications after my surgery. Luckily, they didn’t have side effects. But that’s where curiosity kicked in. Instead of increasing doses and/or taking additional medications, what if I did the opposite? What if I decreased medications to eliminate anything “epilepsy related” from my body?
I posed this question to my doctor, who — after knowing and trusting me for five years — gave me the okay be my own boss and go ahead. So I did. I said I would begin decreasing medications. I politely refused decreasing at the usual pace of once per week (too fast, if you ask me), and told him I would do this slowly in order to notice my body’s reactions. So the adventure began. Of my two medications, I began reducing the dose of just one at a time, at a rate of once per month.
It took a couple months to notice any effects (which was fine; it proved my theory to extend the process). But after the finale of this eight-month decrease, the effects were good! Great, actually. I noticed an increase in energy and a decrease in seizures. So I soon began decreasing my second medication. This took an additional eight months. And the positive effects continued.
The total decrease lasted a total of 16 months. And after it’s finale in May 2013, my seizures have nearly vanished. I’ve had one in the last three months. To top it off, I feel awesome. I’m energetic, alert, and most importantly, feeling seizure-free and healthy.
If you have epilepsy and are reading my story, the moral is not to order you to immediately stop taking any and all medications. The moral of this story is to oblige your own feelings. If you’re convinced that your given medication is helping you, awesome. So be it. Continue helping yourself. But if you suspect the opposite, or just aren’t sure, do what I did. Talk with your doctor about your choices and desire to reduce the medication(s), either very slowly like me and/or at your own pace entirely, and to let nature take its course. It may have positive effects similar to my case. It may also have worsening effects. Just pay attention to these effects, and more importantly your own body, to determine your next course of action. If you think and act this way under any circumstances, epilepsy or not, I believe you will witness an increase in your health. Good luck!