Epilepsy Warrior

I was 15 when I was first diagnosed. It didn't really occur that my life was changing, just that I had to take medicine daily and I hated Tylenol. I cried for a few days, but I got over it and realized, this is the card I was handed, might as well make a few trick moves. As a teen, I wasn't responsible with this diagnosis, and I certainly wasn't about to let it run my future and all the possibilities I had.

The beginning was rough, the acceptance and of course, beginning the medication, but it took years of being told I was 'faking it' before I successfully seized and received a diagnosis. See, for years I was having "fainting episodes", and they always happened after physical activity, like gym. I eventually started holding back in those types of activities and explained to my teachers, I just can't do it. This obviously did not work out well, even with my parents. Everyone assumed I was hardcore, rebelling and refusal of school- but explaining my symptoms felt ridiculous.

- Jolting and losing the ability to hold an object in my hands. (Myoclonic jerks)

- Fainting spells.

- Weakened system in physical exercise.

- Inability to concentrate.

- Memory loss.

- Depression.

I felt trapped and forgotten about for a while. Everyone thought I was behaving badly, I didn't want to be in school, I didn't want to participate. I went down a slippery slope for years, so I didn't take care of myself. I was inconsistent with the medication, therefore, continued to have seizures. I was drinking, partying, partaking in recreational drugs- anything to solve the isolation and shame.

By the time of 18, I had pretty much managed through with very few full blown seizures, but still actively having the myoclonic jerks and absent seizures during the day. At 18, I was still taking Keppra, but I soon changed to Lamictal, as Keppra wasn't strong enough to control my seizures and jerks. On Lamictal, I wanted nothing more than to fade away and disappear.

My depression severed to the point, I tried taking my life quite a few times, and always led back to vomiting mornings and lack of appetite. I shrunk in size, as well as motivation. I quit being committed to family get togethers and social gatherings. I refused to partake in parties, in work, in living. Until my late 19th year, when I met my husband.

With my husband, he brought my world back into light, and after a month of dating, we tied the knot. We signed our first lease and began our lives in December of 2011. My seizure activity subsided for the most part, as I was in a routine and working. Things were going fantastic, until we had our daughter, in late 2012.

My jerks began returning, even with consistent doses of medication and enough sleep. I had one major day where my medication, Lamictal, caused my body to continuously seize, without losing consciousness. I also lost any mobility in my legs twice that day, the second time I face planted the floor and had to go to the ER. After that, I really started watching my sleep schedule and really tried to maintain any seizure activity as much as possible, while going through another dosage increase.

In 2015, my life completely changed. My husband and I were shopping in Walmart and began to play hide n seek. He said the sound was horrendous, but the crack was also felt through the floor. I had fallen on a pallet and caused an immediate aneurysm. I was rushed to the hospital and transferred to another quickly as I needed brain surgery. Since then, my memory is constantly in and out, I don't have clear memories and I tend to forget things VERY quickly.

Today: two weeks ago was my first seizure in nearly 2 years, strictly CBD for treatment. I bruised my face up pretty good, but I am doing better. That was unfortunately my own fault. I pulled an all nighter and followed that with three pots of coffee- always trying to play super woman. I was in my bedroom and faceplanted my bedframe. If it hadn't been for my husband, kids, dog and friends next door- I'm not sure what would have happened. I spent two weeks recovering from the seizure, bruise and fractured eye socket.

Epilepsy has affected me my entire life and no one knew what it was for years before diagnosis. I was told I was faking it and I was being dramatic, even doctors couldn't pinpoint the problems and I had limited explanation to give them or my parents. I am grateful the Creator has had so much grace in my life to wake me up each time I seize. I'm not scared of it anymore, I walk through headstrong each time I succumb to them. I have all the reason to praise.

My only medication is CBD, as that is the only medication that has not affected my body or functional ability, as well as keeping my seizures controlled. I vouch significantly for the use of CBD with Epilepsy disorders.

Some facts for you about Juvenile Myoclonic Epilepsy.

JME (Juvenile Myoclonic Epilepsy) is a seizure disorder. This typically starts between the ages of 5-16. It can be controlled with medication, but will most likely be taken for a lifetime. There's also three different types of seizures; absent or "zoning" for 10 seconds or so, myoclonic or the "clumsy trait" of dropping things, and finally tonic-clonic or "full blown" seizure lasting 1-3 minutes. Never longer than 5, call 911. I am still respectfully on CBD for my treatment and vouch for it wholeheartedly. Keppra did not control and made me lose appetite, as well as angered me. Lamictal paralyzed me during intake. Depakote, began eating my liver. I now have a lesion.

We need more support in Epilepsy, we need more information shared and more questions asked by friends and family, not just hearing the diagnosis and first aid. We need to teach our children to love thy neighbor, even when things are different with their friends. We need to address criticism and bullying appropriately. We need to educate our children living with Epilepsy on the mental toll it may take and the recovery process from start to finish.