I pray you find hope and maybe some answers through my story and know that your Heavenly Father is with you thru the storms!
Seizures have always been a part of my life. I don’t remember a time of never not having them. I’ve had hypermotor seizures since around age 5. My family thought it was a form of panic attack. They believed it was anxiety because a hypermotor seizure had never been seen before. I was in 6th grade and it was during finals that I had my first gran mal. Not until I turned 40 were my seizures correctly identified. Then, I discovered that I was born with focal cortical dysplasia type IIb.
Teenage Years
My 6th grade year I had decided that I wanted to be a cardio-thoracic surgeon! In my mind, I was well on my way. Then the medications started: sleeping, hands shaking, being constantly tired just came with it. My mom and I went to at least 7 different neurologists around where I lived til I was 16 trying to get answers. I didn’t present as a classic seizure case so they all had differing opinions. Some said they were seizures and others said they weren’t. All the neurologists we saw did the same tests and changed medications. The new medications worked for about a month each time. Then the seizures would return.
The Seizures & The Fight
Now that I’m ‘much’ older I can look back at this and relay everything that was happening. I used to not be capable of talking about it without sending myself into a panic attack. It was just the thought of having another one that was so horrific. My uncle would later tell me that I looked like a fish flapping out of water when I had a seizure which was probably the best way to describe it from the outside looking in. I would have an aura that was terrifying to me. My stomach and head felt like they were doing a somersault and then this strange feeling of terror thinking, “here we go again”. I would have a sense of fear and like someone or something was coming up behind me. I would get goosebumps on the back of my neck that would spread down to my toes. It was the most awful feeling but when that happened, I knew what was about to happen. I would fall if I wasn’t already lying down and scream like I was being killed..”help me, help me” while my arms were flailing and legs kicking. Safe to say, fear ruled my life a lot but I was and still am in many ways, stubborn. I wasn’t going to let it keep me back or down. I worked full time like any regular teenager does when they turn 16. I had seizures while I was working drive thru or in the lobby while I was cleaning, etc. I would get that about 30 sec. aura, knew one was coming and get to a place and sit down. Start screaming and looking like a fish. Just terrified inside my own skin every time it happened. My life was a wait and see game. Doctors would say I ‘might’ grow out of having them in my early twenties. The medication list grew longer sometimes taking 4 medications throughout the day. Even taking medications to counter the side effects of the other medications. Hope wasn’t even a thought. They were just my way of life. I had been having the ‘hyper motor’ seizures since I was 4 that we know of. The constant fear, tiredness, lack of energy, lack of ‘want’ to do anything ruled my days.
Dreams, Detours, and College
When I went to college I didn’t see me being where I am today. In my future I had seen myself working at the CDC. I went away to college with seizures and all. The want of being a surgeon had to go and be replaced. It was not possible for me to be a nurse or a certified nurse’s aide. How would I help someone who can’t help themselves, when I couldn’t help myself? Since I couldn’t physically be around patients, I decided to do research. I started in a genetics major and ended up liking bioinformatics the most. I would study for hours a day, only to wake up and not remember any of it. Five long years later, after I had given it all I had to give, I was 30 credit hours short of a double major in biochemistry and microbiology.
After College & New Challenges
After college, I had my daughter and we had to live with my grandma. I couldn’t be left alone with my baby when her dad was at work. We never knew when a seizure would come on. As it was, my family had to come pick me up because of the seizures I was having at work. My grandma was diagnosed with lung cancer and died less than a year later. So we moved in with my mom who is a homesteader with pigs, goats, milk cows, garden, etc. Before now, I’ve never been able to live alone.
If you don’t know, then you don’t know
While living with my mom on her homestead, I went to a word of faith church and I met God. I didn’t realize I didn’t know Him. I grew up in church and knew about God, so to be honest, I didn’t give it any thought. I didn’t know about having a personal relationship with God until this church told me about it. When I found my personal relationship with Him, I latched onto Him like a lifeline and I haven’t let go. Thankfully, He hasn’t let go of me either!
The Answer
After what seemed like countless more Doctors and not any concrete answers, I was referred to a level 4 Epilepsy center. They had the answer in just five hours after my first MRI. I had a 2-inch lesion on my right temporal lobe: Focal Cortical Dysplasia. The conservative treatment was to remove the lesion, which meant a craniotomy. Unfortunately the seizures returned a few months later. Next they performed a SEEG, drilling 13 bur holes and placing long, needle-like wires in my brain to monitor and record the brainwaves. During that test, they found I had two 10-minute seizures, and I went straight into surgery. While removing the wires, they performed another craniotomy—this time knowing exactly what they were after. My right hippocampus, amygdala, and temporal lobe were removed.
Today
By Gods grace alone, I am now hypermotor seizure and fear free for 12 months. He led the doctors and neurosurgeons with their knowledge and movements. I don’t have the hypermotor seizures anymore or the terrible fear. I can garden and can food in increments. By increments, I mean about 20 minutes at a time and with help from my teenager. As I learn more in depth, she gains valuable life skills also. I sleep ten to twelve hours throughout a day. They say its the brain healing and can last for up to 5 years or the rest of my life. It’s called ‘my new normal’. I call it one of God’s many many blessings He has given me.