An Epilepsy Story: The Brain Behind The Beauty

Epilepsy is a brain disorder in which a person has repeated seizures (convulsions) over time. Seizures are episodes of disturbed brain activity that cause changes in attention or behavior. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.

Complications

• Difficulty learning
• Breathing in food or saliva into the lungs during a seizure, which can cause aspiration pneumonia
• Injury from falls, bumps, self-inflicted bites, driving or operating machinery during a seizure
• Permanent brain damage (stroke or other damage)
• Side effects of medications
  What Can You Do? Get Seizure Smart!
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The Brain Behind The Beauty
Confessions of an Unexplained Battle

This is a story submitted from Erin Marie…

I was twelve years old getting ready for school in the morning I had just gotten out of the shower with my bedroom door locked I illegibly had my first seizure. When a person has a seizure they normally black out since my door was locked no one truly knows what happened to me that morning. After hearing a big thud my mom rushed upstairs banged on my door I answered only a few minutes after with a blank look on my face. My mom nervously called paramedics, I laid on my couch with the weakest and most confused feeling I’ve ever experienced. The paramedics came in my house watched me lay there and asked me several question. Things a five year old would know such as, what’s your name? what’s your birth date? Where do you live? I could hear the men but could not answer. The feeling was so helpless I started to cry. They told my mom the way I was responding it seems I may have had a seizure.

            I went to Robert Wood Johnson hospital took a few tests EEG, MRI, CAT Scan etc. I did not want to do this, I was twelve years old I wanted to be with friends and enjoy myself. My test results came back as “abnormal” but apparently that is normal. A few months went by and on my way to the ice cream shop with my mom I had another seizure in the car. My mom pulled into the closest parking lot and layed me down on the ground she was screaming for help! And who else to come to her rescue than the dominos delivery truck driver.

            Technically anyone that has two or more seizures is considered epileptic. Epilepsy is a condition caused by chemical imbalance in the brain after too much of the chemical is produced the reaction caused is a seizure. Remember chemistry class?

            I went on a few different medicines starting with depakote. I took 500MG in the morning 500MG at night --easy enough. My doctor told me since I was so young commonly they see people grow out of this and expected my type of epilepsy and grand mal seizures I was one of the lucky one. Everything was going smooth the only problem was the medicine was making me gain weight and I just had a bloated uncomfortable feeling. I was five foot two inches and one hundred thirty pounds. Time to change the medicine. I was weaned off depakote and started onto topamax. Topamax is commonly used for depression but tested to work well for epilepsy. Being a female I was limited to which medications I could take that were fetal friendly, as if I cared when I was twelve. Only problem with topamax was it was very expensive even with insurance. I then switched to keppra and was doing great on it. By junior year in high school I was seizure free still but my doctor kept me on it because I was turning seventeen and getting my license. I began weaning off the medicine as a senior in high school and my life was just starting!

            I went off to college and really enjoyed myself. I loved the lifestyle and freedom. With all the excitement I was not taking care of myself the way I always did. My eating habits, exercise and sleep all took a back seat my priority was working to make money to go out while getting my school work done. I felt sick my fall semester and assumed it was the flu. Days went by of having this feeling and I even got a new dorm roommate in this time. I remember the day she moved in I said “nice to meet you do you need any help?” she said “no my sister is here to help me.” I decided to take a nap with all the boxes being thrown around and her moving in I slept right thru it, I can only imagine what she thought of me. Finally, I called my mom and said come get me I need to go to the doctors some things not right. On the car ride home I had the worst pains in my right side. My mom knew this was something more than the flu. I went straight my family doctor. Dr. Knee thought my appendix burst and called me an ambulance. I am one to hate all this medical attention I begged my mom to talk her out of it!! But good thing she didn’t because it turned out to be pneumonia. I was in the hospital for ten days with a drain in the side of my lung. One of the most disgusting things was to watch mucus and blood drip into a tube hanging out of my side into a box. My lung was so full I had no choice. The way a persons lung collapse is by the sticky mucus on the sides of the lung coming together like glue and then the lung can no long expand. The chest tube helped prevent this. Another helpful thing was breathing deeply into a tube watching a ball go up and down to measure the breath. The deep breathing caused me to get light headed and I had not one but two back to back seizures. I went to the intensive care unit and my epilepsy doctor came to see me and talk about getting back onto the medicine.

            I went back onto keppra, but I didn’t want to believe it! I knew the seizures were only from the pneumonia and my phase was over. I started skipping doses of my meds and of course had another seizure. I was so upset. The fights started with my parents they felt I was not taking care of myself and not taking my medicine. I knew I may have skipped a few doses and was drinking every weekend like a college student should. I talked to my doctor about drinking alcohol on the medicine and she said it was fine, but not because I wasn’t twenty one yet. Keppra does not go through your liver because you pee it out. I convinced my parents to keep this seizure a secret from my doctor because in the state of new jersey legally you cannot drive until you are six month seizure free.

Around the time of hurricane Katrina I had a seizure, which was odd because I spend the weekend home with snacks, movies and plenty of rest. I told my doctor about this one. Since it was the first she heard from my seizures other than the pneumonia ones she didn’t report me so I still could drive. we talked about the medicine should prevent it but there is always a .001% chance one slips through. Luckily I was home on the couch with only a bit up tough to worry about.

Next time not so lucky, my sister had a fairy tale wedding it was months of planning and so much excitement! The day had finally came it was an early morning of hair, make-up and getting ready. Followed by a long night of dancing and partying! We slept in a hotel the next morning I woke up about 9AM feeling hung over. I insisted on helping go back to the reception hall to help get center pieces and anything left behind. My parents were only 5 minutes behind me. This time not so lucky, I had a seizure in the car while driving. The reception was at beautiful Naninas in the Park. I drove straight into the park approximately 40 miles per hour into a tree. I totaled my car but I was okay. The ambulance came and I went in the back of the truck. I was mumbling and he knew I had a seizure, but my conscious still came through I was scared to tell him any of my information. I told him I did not have ID and I was twenty one thinking that last night alcohol could still come through a breath alizer. My poor mom saw the totaled car in the park and thought that looks like Erin’s car, then said holy cow it is Erin’s car.

My life started to suck I was in my junior year of college and just started to commute. I added on another medicine called lamical and upped my keppra medicine. My mom who I took all my anger and frustration on drove me Monday through Thursday to school, god bless her soul! I got blood tested and was cleared to drive. I currently take 4000-5000 micro grams folic acid this is to help any future childrens brain development, poor kids they’ll need it, along with my other two medications. I carry around an old lady Sunday-Saturday pill case.

All this sucked but I truly feel blessed to have family and friends who are there for me to talk to and who are there to support me. Epilepsy sucks but it can always be worse! Take care of yourself because taking 17 pills a day is better then crashing into a tree.


A Big Thanks to Erin Marie for Sharing Her Experience with Baggage Beauty!