Friday, July 18, 2014

Life With Epilepsy (30 Days of July, 2014: Day 18)

Many of you know that I have a seizure disorder.  For some reason, I rarely call it epilepsy, even though once you've have two seizures that's what the diagnosis is.  I think I shy away from that phrase because it's scary.  I don't think most people really understand what it is, and it makes them uncomfortable.

If you're unfamiliar with my story, read here and here.  My goal today is to shed some light on this condition.

These facts blew me away.  I didn't know that epilepsy was so common before I started writing this post.  What is each day like with epilepsy? Well, keeping reading while I shed some light on what each day is like for me.

I've only had a few Grand Mal seizures...the type where your body shakes and you fall to the floor. Unfortunately, one of them happened while I was student teaching in the 6th grade.  Luckily, the students knew about my disorder, and a few went to find their regular day teacher, who was at the school when it happened.  My most common seizures are Petit Mal.  I could be having a conversation with you and suddenly I just stop doing everything. You might keep on talking to me, but I can no longer talk to you.

When I have a seizure, I have NO IDEA what has happened.  How long have I been "out of it", what did I do while I was having a seizure? It's very frustrating. If it happens while I'm exercising, I'll rewind the DVD to the last thing I remember and then push play until it catches up to the next thing I remember to help me discover how long the seizure was.  If I'm with my family, I'll ask them.

I've already lost my independence once due to epilepsy. I fear that one day I will loose it again. In my 20's I lost my driver's license and had to rely on the good graces of those around me to take me EVERYWHERE I needed to go. I had family and friends keeping their eye on me throughout the day to make sure I made it to where I walking to. At one point I couldn't even work because of this. I've digressed back to a child in many ways, needing my mom to help me more than any adult would like that to happen!

My family has been through a lot when it comes to my seizures. They remember them all, deal with the aftermath, help fill in the blanks of my memory. They worry about me, are afraid that something worse will happen to's exhausting for everyone. I wait for the day when I don't have to hear Brandon ask me if I'm having a seizure because I'm not talking. And I wish that he didn't even have to know that sometimes mommy has seizures. Luckily, he's never seen Grand Mal; I hope that never happens in front of him.

Sometimes I have "auras"; I can sense when a seizure is going to come and can often stop it by using my VNS device. This isn't always the case. Often they hit and I don't know it until I've snapped out of it and am realizing that I've lost time. This is definitely one of the scarier aspects of epilepsy. You never know when it will happen, or where you will be when it does happen. You're like a ticking time bomb. Never knowing when it will happen is another reason why I am such a homebody.

This is how I am feeling as of late. Since my surgery last November, we've been working on getting my seizures back under control. I want nothing more than to have another 6 years seizure free! Unfortunately that hasn't happened yet. I am lucky, because I can usually go about a week or two between seizures. But there are times where I will have one each day. Medication changes happen often, as you will often "fail" one, which means it doesn't work for you no matter what the dose is. Right now I'm in the process of changing the dose of one of my medications because I keep having breakthrough seizures.

This is one part of epilepsy that I deal with on almost a daily basis. Headaches come often, lead to migraines, and don't go away with either special headache medication or REALLY strong over-the-counter medication. I've managed to finally find an OTC drug that works: Excedrin Migraine. Surprisingly this medication knocks out almost all of my migraines.

Like I've mentioned before, epilepsy has taken away a lot of my memories. This is both a blessing and a curse. It's very frustrating to not be able to remember events from your own life; important events, like your first marriage, the people you've dated, my pregnancy with Brandon, and most of college. I try, but there is nothing there. The blessings of memory loss are when you don't WANT to remember things; like my first marriage! I've also had many tests done over the years that I'm grateful not to remember.

November is epilepsy awareness month. If I were ever going to get a tattoo, this is what it would be. This is a beautiful logo, and if you see it, know that it represents epilepsy awareness.

My neurologist always tells me that SEIZURES DON'T PLAY FAIR. I've never heard more true advice regarding epilepsy. Overall, I know that my life is blessed. There are people with epilepsy who have a much harder life than I do. I know what causes my seizures. Other people don't. I am able to keep a job, and take care of my family, others can't. I still have the ability to drive, even though I do it A LOT less than before. I function pretty much like a "normal" person. I am very grateful for all that I have, and hope that one day soon I won't have to worry about seizures anymore.

This is me each day I don't have a seizure!

Each day you have to get out of bed, try not to stress about what may or may not happen, and remember this quote!! And overall, you have to do all you can not to stress out about what does happen, because stress causes seizures!

1 comment:

  1. maggie.danhakl@healthline.comFebruary 1, 2015 at 8:15 PM


    I hope all is well with you. Healthline just published an infographic detailing the effects of epilepsy on the body. This is an interactive chart allowing the reader to pick the side effect they want to learn more about.

    You can see the overview of the report here:

    Our users have found our guide very useful and I thought it would be a great resource for your page:

    I would appreciate it if you could review our request and consider adding this visual representation of the effects of epilepsy to your site or sharing it on your social media feeds.

    Please let me know if you have any questions.

    All the best,
    Maggie Danhakl • Assistant Marketing Manager

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107 | @Healthline | @HealthlineCorp

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