Amber’s Story

Teachers reported to my mother that I was sleeping through my classes in my senior year and I kept telling her that I felt sick for days at a time – “what kind of ‘don’t feel good’?” She thought it was “senioritis”, so did everyone but my pediatrician and the neurologist’s assistant. Around Halloween 2008 I had my first EEG, a quick one with some strobes just to see if anything would happen, and nothing did (other than missing school and getting to watch Hocus Pocus during the test). I had an MRI and, while the nation was voting I was having my first 12-hour EEG. By chance it was a “Don’t Feel Good” day and I seized every time I took “naps” throughout that day. I seized every hour for 12 hours. Petit Mal, in my sleep, no sign of it besides feeling sick. When they looked over the test at just a quick glance, even the nurses could make out what was happening. I turned down the first medication they ever prescribed, the side-effects outweighed feeling ill for three days every other week and my parents resurrected my decision. I seized at least once every month and recovered for three days minimum.

In 2011, I went through “A Series of Unfortunate Events”. I was attending and teaching dance classes and one evening I was with my four classmates, teacher (the owner and my friend), and her mother. Everyone was having such a wonderful night and I was exhausted but, admiring how happy they all were.. and then I woke up with two paramedics and my mother in my face. I had my first Grand Mal (now, tonic-clonic) seizure. Lucky for me the owners bff was epileptic and she and her mother knew what to do. I was able to respond and think so, I never went to the hospital. My parents decided to lecture me instead of show empathy, and while they were talking, I went down again. Their hearts grew three sizes that night when they realized and accepted that I wasn’t perfect or lying, and we went to a new neurologist the following week. I was put on Keppra. A couple of months later, I graduated with my AA but got food poisoning. A few months after that, my mom and I got in a car accident that killed her and resulted in two surgeries on a broken arm for me – the guy walked away with nothing while the city erected monuments and a Day of Remembrance. I continued to seize but, I figured it was a lost cause and I could feel them coming anyway. I’d just brace myself, seize, move on. I didn’t bother talking to my Dr to see if anything more could be done, he always said that was good enough. In 2014, my dad took me back because I was obviously suicidal and people had to hold me back from hurting myself. Dr said it wasn’t the meds, go to a psych, those symptoms are incredibly rare. I started seeing a new guy and he put me on Lamictal. I stopped seizing for the most part, was able to drive, functioned great! Then they got worse. I eventually had to threaten to take that practice to court for withholding records and lost my license again. In 2015 I won my local Miss America competition, it was a childhood dream and I spent the year with these old ladies that ran it and that I loved. I was also still attending college and teaching dance through all of that. In that state competition I met about 14+ young women that made me rethink pageants, they were all there for Miss America and just about every one had a disability, disorder, trauma or had battled cancer. And they were all community leaders, business owners, doctorate students, it was amazing. Unfortunately, I think I could have made some headlines with how the judges treated me because of my epilepsy. I spent the rest of my reign campaigning for safe driving and being a princess for all of my little girls – a handful of my students were autistic, half lived in the ghetto and there were several other children in my life that had random issues like prune belly syndrome. I just attracted them.

I started referring to my epilepsy as my Purple Parrot around then, to explain it easily. It’s not a why on my back, it’s a heavy bird. Some times it “flies away” but never very far and it’s always gonna be right back. And parrots are pretty, and I don’t want to imagine my epilepsy as a vulture or something ugly, so My Purple Parrot was born. I started dating my husband around then, and continued seizing monthly. I seized in his arms, with his family, with mine. I hadn’t had a neurologist in over a year and he made me go to a new one. Enter Dr. Pinzon. He was great. I convinced him to let me off of my meds after having been safe for 6+ months. Unfortunately, I turned around and drove 12 hours to go be with my 8.75 months pregnant sister. Needless to say, I seized when I got to her. Easter weekend 2018, I had tonic-clonic seizures on and off for three days. I woke up with amnesia at least once. One moment I was getting a call from a guy that goes to my church and I had no idea why. And then I saw my left had and realized I was marrying him in a month.

My sister kept me at her apartment, my brother-in-law came back from work two hours away, my husband drove up with my dad, and my dad slept 12 hours planning I’d be dead by the time they got there. I managed to get it together, had a beautiful black-eye and huge bump on my forehead, husband brought me home and my mother-in-law sent me to the ER to be checked for a concussion. The bump and black-eye were gone for the wedding and it went smoothly. I only seized once but, that was after the wedding. During that time, I tried Aptiom and then, I was put on Vimpat. In fall of 2018, insurance changed and I switched to the Neurology Team at the University of Miami, per Pinzon’s suggestion. I met the team February 2019 and we brought videos of my episodes – courtesy of my husband setting up cameras around the house. It was enough for them to start tests and preparing insurance for brain surgery.

August 30, 2019 I had a laser ablation to my left hippocampus. I was of the first collection of patients to have it done. I had no complications and they got rid of 2/3 of my left hippocampus that was deteriorating and causing the seizures. I have seized far less and went all of 2020 without it, and graduated with my Master’s degree in Electrical Engineering at the start of the insanity. I didn’t seize until I got pregnant in 2021 and only seized twice in those nine months. I had a healthy baby boy (just turned 2!) and a nice pregnancy.

In 2022, I self-published My Purple Parrot, a children’s book about living with epilepsy, it has the Epilepsy Foundation Seizure poster and discussion starters and I am hoping to have it donated to children in hospitals and to different foundations to hand out eventually. This year has had a lot to it too. My husband and I bought our first house and I found a new job. I thought things were fine and switched back to Lamictal only for it to make me sick and the seizures came back full throttle and with new patterns. Needless to say, I switched again to Vimpat. I have had subdural EEGs, regular EEGs, MRIs, CAT scans, the laser ablation, and a few other things done to my head. I am so grateful to have experienced it all though. I have met people that live in the middle of nowhere and gotten to teach and comfort them, to share little purple ribbons. I’ve made city speeches, made a book and been a teacher. This is a long story but, I think it’s been a great one so far.