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Epilepsy Blog Relay™: Abby and That Terrible Reminder

This post is part of the This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2017. Follow along!

Abby’s Story

Recently, I’ve changed my medicine.  I’ve always been on Keppra and Lamictal, but at the end of last year, I went to see a new doctor.  I absolutely love him and am so happy with my decision.  He asked me basic questions about my health and the conversation quickly turned to some of the side effects that I feel like I have.

 

To be completely honest, I’ve been on two medications for so long that I can’t really pinpoint any side effects.  I did talk to him about memory problems and some word finding problems that I felt like I was having at work.  He seemed to think that it may be a side effect of Keppra.  After hearing that, I asked about moving to one medication… Lamictal.

 

At the beginning of 2017, I started the transition.  My dosage of Keppra slowly got lower as my dosage of Lamictal went up.  Every other week, I went to get blood drawn to check my levels.  After a month, my levels were sufficient and I was on one drug.  During the transition, I didn’t really feel anything different.  I felt like it was a great move for me.

 

I was doing great.  I hadn’t had a seizure in almost two years.  And, I felt like I was where I needed (and wanted) to be… on one drug with limited side effects (for me).

 

Well, sure enough, work started getting extremely stressful, and I was not getting much sleep.  My husband and I took an impromptu vacation to try to get me away from the environment for a few days.  It was a very relaxing weekend, and I felt like it worked.  I came back feeling well rested.

 

While I came back well rested and feeling relaxed, all of the same stresses were here waiting for me.  Since then, I’ve been having terrible auras at night.  It’s been super scary and all of the feelings of triumph and hope that I was feeling about epilepsy have temporarily left.  I’ve been feeling really sad as the past two weeks have been that terrible reminder that epilepsy is still right there.  I cannot let my guard down, and I have to continue to be very careful, because a seizure could happen at any moment.

 

I knew it was affecting me, because I was recently at a meeting at the Epilepsy Foundation of Texas.  As we introduced ourselves, for the first time in two years I was not, “I’m Abby, I started having seizures when I was 12 years old, but I’ve been seizure free for about two years.”  I was, “Hi, I’m Abby, I’ve recently been struggling and have been having really bad auras at night.”  When I uttered those words, I teared up.  I had momentarily forgotten how hard those feelings are to have.  But, there they were… again.

 

I do hope in the next months I can just increase the dosage and stay on just one medicine, but that’s still to be determined.


NEXT UP: Be sure to check out the next post tomorrow by Whitney Petit for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

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Abby Gustus-Alford
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Contributing Writer

Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern.