Meet Kelly, another guest writer in my Faces of Epilepsy series. When I first asked Kelly to share her story she said, “I don’t think it’s much of a story.” It is. Everyone’s journey looks different, which I why I’ve done this series. The more Faces of Epilepsy we see and the more we talk about the different ways Epilepsy presents itself, the more aware we are and the quicker the next person may be to understand her diagnosis. Pay close attention to the difficult decisions a young woman with Epilepsy faces when starting out in married life.
Déjà vu…the illusion of having previously experienced something actually being encountered for the first time. No, I’m not experiencing déjà vu as I write this, but the déjà vu experience was my first hint that I had an issue with seizures; a little weird, I know. I was 16, led a very active life being involved in sports and playing in the school band. I was a member of the National Honor Society, was my class treasurer and had a part time job. As far as teens went, I was pretty normal (though I’ve since learned that “normal” isn’t so easily defined). However, I began to have some déjà vu episodes that began to trouble me. When I brought it up to my parents, my dad told me that everyone has those. Well, do they usually have a lingering headache and feel cloudy headed after they have them? Is THAT normal? Hmm…maybe not. It was time to visit the doctor.
My doctor shuffled me off to the neurologist where I underwent an MRI to rule out a brain tumor and an EEG to see if they could catch anything unusual going on. I honestly don’t remember what the EEG results were (I was 16, remember) but I was promptly put on an anticonvulsant (Tegretol) and was told that I had a “seizure disorder”. My life went on with barely a snag and I continued on playing my favorite sports, working and studying and I graduated soon after.
I had “breakthrough seizures” now and again. They were nothing serious, just more of the same déjà vu episodes that I had experienced before, but I had them much less frequently now that I was on medication. I sometimes had one if I forgot a dose or two of my meds, if I was over-tired or more commonly, when my hormones were fluctuating, but overall, they were well controlled.
Fast forward 4 years… I was about to get married and I knew that anticonvulsants increased the chance of certain birth defects in unborn babies so I told my neurologist that I’d like to go OFF my medication just to play it safe. I can’t say that he supported my decision, saying that these complex partial seizures sometimes balloon into larger ones, but he couldn’t prohibit me and I decided that some episodes of headaches and fuzzy thinking were a small price to pay for a low risk pregnancy. Even though we weren’t exactly planning on it, I found myself pregnant 3 months after our wedding day.
Less than two years later we found out we were expecting again. Still, this “seizure disorder” was something I could easily live with, something that didn’t hugely impact my life as a stay at home mom. Or so I thought…
Seven months into my pregnancy with my second daughter, my husband awoke one night to me gurgling and shaking, and falling out of bed, completely unconscious. Needless to say, he was frightened. The paramedics came, checked me out and I was sent over to the hospital to have an IV of anticonvulsants pumped into my body. Back to the neurologist I went…
This was a bit of a game changer for me. This generalized seizure, a first for me, meant I couldn’t drive…for a year…while home full time with a toddler and a newborn.
At that point, medication seemed mandatory. As we looked at the prospect of growing our family it was after a lot of prayer that we knew we could trust God with another pregnancy. Our children are his handiwork, after all, and we were blessed with another healthy baby, our first born while on Dilantin for my seizures. Another joined us 3 years after that.
As grateful as I was that I had something to control my seizures, I disliked the fact that I needed to be on therapeutic medication indefinitely. I didn’t want to suffer from the potential side effects of being on Dilantin long term so my neurologist agreed that we could try to decrease the Dilantin and use another add on medication (Keppra) which had much fewer side effects…and was able to by-pass the liver. That was working ok until I pressed it a bit further and he agreed to let me try going off the Dilantin completely. Once off of the Dilantin it wasn’t long before I had another generalized seizure. I ended up biting my tongue pretty badly and had some bruises from falling out of my bed but after a week (and a 10 pound weight loss from barely eating and drinking) I healed up well enough.
At that point I realized that Dilantin would be in my future for quite some time. I’ve never had a generalized seizure while taking it and I’m so grateful that there is a drug that controls my seizures well enough for me to carry on with life as normal…well, MY normal. 🙂
She tells her story. You share this post. Together we fight Epilepsy.