Epileptics Unite

If blogging has taught me anything, it’s that being open, honest, and transparent can open many doors to meet and support others.  While I’ve made it a point to share a lot about my journey with Crohn’s disease, my struggles with IBD are not the only reason that I created this website.  My body has been challenged with the task of handling epilepsy, interstitial cystitis, and Crohn’s disease, but the real reason behind Chronically Inspired is to bring support to others.  Not just those who are fighting IBD, interstitial cystitis, or epilepsy… but any chronic illness!

I haven’t shared much with you about my experience with epilepsy.  Not because it doesn’t affect me, but because it is something I have had under control for quite some time.  This past Saturday, I met someone who was wearing a purple “Epilepsy Awareness” bracelet.  Immediately and without hesitation, I asked “where did you get that?!”  Not only did I make a new friend that day, but Ryan was even generous enough to give me his very own bracelet!

epilepsy

In case you didn’t know, Epilepsy Awareness day was on March 26th.  I didn’t have a single purple thing in my closet to wear that day! I really wished that I had written this post last week, but didn’t quite get around to it.  I guess that the little hints in life (i.e. meeting Ryan) are what push us to get with the program sometimes!

Seizure disorders can impact the lives of patients in many ways.  Most states require that you be seizure-free for 3-6 months before being legally authorized to drive.  For safety reasons, that makes total sense… right?  However, the anxiety of wondering if you will make it to that 3-6 month mark without a seizure can be downright intense!  Most anti-epileptic drugs come with a slew of annoying side effects, some patients have trouble getting regulated by medicine alone, and some struggle with petit mal (absence seizures) with or without even knowing when they occur.

I had my first grand mal seizure in 2003 when I was only 15.  School was just getting started, I was cheerleading that year, and I was only months away from being allowed to take my driving test.  Everything in my world was changing and I was scared… but then again, who wouldn’t be?  I had to stop participating in stunts and tumbling with the cheerleaders, surrendered my driving permit privileges, and spent a lot of time getting regulated on medicine that made me sick and tired!

I was fortunate to not have another seizure for quite some time.  I was also a very happy 16 year-old when it came time to get my driver’s license.  I only had to wait about a month and a half later than originally planned.

While this was the end of my story for a long time, it really shouldn’t have been.  Since I had only had one seizure, my neurologist considered it a “generalized seizure disorder” and said that most kids outgrow such things.  At 18, she weaned me off of medicine and never followed up with an EEG or MRI.

In December of 2011, I woke up after my office Christmas party at a nearby hotel.  My employers are amazing people and wanted us to have a good time while being safe.  They rented a bus and hotel rooms for everyone in attendance.  I got up, took a shower, stepped out, and woke up to my husband and boss staring at me.  It didn’t take me long to realize that I was in the floor, I had a serious headache, and that something was NOT right.

My heart sank as the realization that I’d had another seizure set in.  I knew that going to the emergency room wouldn’t do me much good.  So I went home, rested, submitted to being chauffeured around, and called to get scheduled with a neurologist right away.  What happened next is what scared me the most.

After doing an MRI, we found scarring all over my brain.  My new neurologist was quite concerned about this and no one had ever done an MRI before.  We had nothing to compare the scars to and have no way of knowing how long they have been there.  All we do know is that they were causing more and more abnormal brain activity.  He immediately ordered an EEG and we found that I was having petit mal (absence seizures) and didn’t even know they were happening.  I knew something was wrong when I wasn’t supposed to follow up with the doctor for a week, yet the technician went upstairs to get him anyway.  I left with a prescription for a very large dose of Keppra that very day.  Now that we knew that this wasn’t a fluke, I had an answer… I just didn’t like it.  I had been diagnosed with epilepsy.

That second seizure changed everything.  However, I am very blessed that it happened when it did and took place in a safe environment.  If I hadn’t had that seizure, I wouldn’t know that my brain was getting more damage by the day due to constant petit mal seizures. Now that I have been on medication for over 2 years, I realize that my memory is clearer and I don’t stumble over my words so much anymore.  I sometimes wonder how much of my life was wasted in seizure land…

The process of getting my seizures under control was not an easy one.  I had to ask for help from others, and even asked my grandmother to come to town and drive me for a while.  After 3 months of no driving, 6 weeks of wanting to do nothing but sleep while adjusting to new medicines, and many doctor’s appointments… I was a free woman!  I know that I will have to take anti-epileptics for the rest of my life.  I’m ok with that. What I’m not ok with is losing another second of my time to a seizure.

If you or someone you know struggles with a seizure disorder, there are several things I want you to keep in mind:

  • You aren’t alone!
    • Since posting on Facebook about meeting Ryan, I’ve had several people reach out to me for advice, moral support, or just because someone didn’t realize that seizures are something I’ve struggled with.
  • It’s ok to ask others for help, that part gets easier.
  • Don’t be afraid to talk about it! The more we talk about our challenges, the more others can understand how to help.

What are some of the challenges life has presented you with?  How are you overcoming them? Do you think it’s easier to cope with different issues when you have someone in your life who can relate? I know that I do!

7 Comments

7 Comments on Epileptics Unite

  1. Ybbob Nomis
    March 31, 2014 at 4:55 pm (4 years ago)

    As a young child I remember being diagnosed with absence seizures (or not remembering for a lack of a better term) and I applaud you for sharing your struggles with us Mal! I was never aware of this special day set aside for the individuals struggling with seizures but i will be sharing this with everyone.

    • Mallory
      March 31, 2014 at 5:21 pm (4 years ago)

      Wow, Bobby! I never knew that! Thanks for reading, and more importantly… Being there for me when I went through all this mess the first time. You have no clue what your support, driving, and keeping me company meant to me!

  2. Joseph Savage
    March 31, 2014 at 5:03 pm (4 years ago)

    Thanks for the beautiful blog you wrote for Epilepsy, wanted to tell you my mom has crohns disease and has to wear a colostomy bag so I understand that illness too . Oh you better be wearing that bracelet!! Lol!! Please pay it forward!!!

    • Mallory
      March 31, 2014 at 5:20 pm (4 years ago)

      I was glad to write it! Now, do you prefer to go by Joseph or Ryan? You better believe I’m wearing that bracelet! I had been wanting to write about epilepsy and other seizure disorders for a while, running in to you only inspired to do it more quickly!

  3. April
    April 1, 2014 at 2:35 am (4 years ago)

    This post touched me. I can relate but from a mothers perspective… Hannah is 12 and has Epilepsy. (As you know) the biggest struggles for her are the fear of when the next one will come…. Dying in her sleep (SUDEP) and the side effects of the keppra. Our mantra is WE ARE NOT RULED BY FEAR BUT LIVE BY FAITH. we trust that God has His mighty hands around my baby girl and will protect her and watch over her better than I can… No matter how many times I check on her in the night…bless you for sharing this. You’re a beautiful, precious and lovely woman!

    • Mallory
      April 3, 2014 at 6:29 pm (4 years ago)

      Thanks for reading, April! I’m always thinking of and praying for Hannah. I feel so fortunate that the worst of my struggles have been after graduating from high school and college. What tugs at my heart the most is knowing that there are school aged children and teenagers learning to navigate life with extra difficulty at an already difficult age!

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