Epilepsy Awareness Month – My Epilepsy Story

If you follow me on Instagram, then you’ve seen me sharing information about Epilepsy. With November being Epilepsy Awareness month, I figured now would be the perfect time to discuss it.

I’m not going to lie, I never did anything more than take the information that my neurologist had given me when I was diagnosed. All I knew was that I have epilepsy, it’s a seizure disorder, and that it’s originating from my left frontal lobe. I knew the medication and dose I needed to take and if that didn’t work , then I had to tell them immediately so we could increase it accordingly. That was it. I don’t know why I never felt the need to research further – I guess in my mind I knew it was controlled and that was that.

I couldn’t tell you what gave me the sudden urge to be vocal about my condition and to research more, but I’m so happy that I did. I could finally know what the seizures I had were called (I knew grand mal but I called my others “little seizures”, but that’s what they were in comparison), what is associated with my specific epilepsy, and so much more.

Before I continue – I’ll share my story.

April 24th, 2007. I was diagnosed 11 years ago, at age 15. Every morning my mom and I had a routine, I would set my alarm for 5 minutes before she would come in to make sure I was up, and then she would turn on my light to help motivate me. Everything was business as usual, but when I started waking up (after she came in) I got this weird feeling. It is one of the hardest sensations for me to describe (I’ll try a little later in the post). I knew something wasn’t right and then about 10 seconds later my head started shaking and turning to the right. I couldn’t stop it and the next thing I knew I woke up on the floor of my room, facing the opposite direction I had been. This was more concerning to me because I had a loft bed at the time. There were two paramedics in my room with me and I felt absolutely drained. They helped me up and brought me out into the living room where they asked me questions like what my name was, my birthday, the date, and our address. After that I was brought to the hospital for tests.

Considering my age they were almost positive that I had a drug overdose of some kind. They kept asking me in the ambulance, even after saying no every single time. From that point on I had a CT scan, blood work, and other tests done. It was determined that I needed to see a neurologist, so the appointment was made for the next day. I learned there that I had a grand mal seizure (I’ll include those definitions below). Then, like clockwork, I had “little seizures” every two hours. This went on until my neurologist prescribed me with medication the next day.

I had an MRI and an EEG – during both I had a seizure. Which ended up being a good thing, because we knew exactly where it was originating. My mom almost killed the MRI Tech because she told me to stop moving when it began, believe me lady, I didn’t want to be moving. My neurologist came in and said the good news was that it wasn’t a brain tumor (I had no idea that was a possibility) but that it was epilepsy. My original prescribed drug was Keppra and I was put on a fairly high dose. The next day at school I had another “little seizure” so we upped it by half a pill.

I was seizure-free for 4.5 years when we decided I could be weened off the medication. Some people are able to do this and no longer need medical assistance, basically growing out of the condition. I was medication-free and seizure-free for an entire month then October 25th, 2012 I had three “little seizures” in an 8 hour period. Thank god I had Jeremy with me (we had been dating for only a month at the time). After that first one I called my neurologist and I was told to go back onto the last dose that worked. Unfortunately for me this lower dose gave me bad side effects. I couldn’t sleep and I would get intense panic attacks before having to drive anywhere (don’t ask me why that was the only trigger). We switched to my current medication, Lamotrigne, and I haven’t had any issues.

In June of this year, I was starting to get my weird feelings before a seizure would happen, but nothing would continue after that. So after a blood test we learned that I dipped well below the therapeutic levels I needed to be at (on a scale of 5 – 19, and I was at a 3.1). I was having these feelings about every 2 or 3 hours like before, so I have come to the realization that I could not live a normal life without medication. We upped the dosage again and I haven’t had any continued issues. As of October 26th, I have been seizure-free for 6 years now.

My Types of Seizures

Turns out I have been having seizures since I was about 7 or 8 years old. They were quick and would last about 15 seconds. Short enough to where I didn’t really think much of it. They started to ramp up closer to my grand mal. I only remember about 7 in total before my diagnosis (and my parents have no idea). One happened at school the day before and it lasted longer than the others had, but again, I was dumb and just ignored it.

What is a Grand Mal seizure? The technical term is Tonic-Clonic seizure.

“Most conspicuous type of seizure; generalized sizures which usually begin with a sudden cry, fall and rigidity (tonic phase) followed by muscle jerks, shallow breathing or temporarily suspended breathing and change in skin color (clonic phase), possible loss of bladder or bowel control; seizure usually lasts a couple of minutes, followed by a confusion and fatigue.”

My “little seizures” were actually Simple Partial Seizures.

“Seizure activity in one part of the brain resulting in: a) jerking in one area of the body, arm, leg or face; b) partial sensory seizures where a patient experiences distorted environments, sensory illusion or gastric discomfort. The motor or sensory activity may progress to a convulsive seizure.”

**Both definitions from the Epilepsy Foundation website

My Type of Epilepsy

I am diagnosed with Frontal Lobe Epilepsy, which is the second most common form after Temporal Lobe Epilepsy.

Symptoms include head and eye movements to one side (always my right) and complete or partial unresponsiveness or difficulty speaking.

I experience what is known as an Aura.

“In most cases, a patient will experience a physical or emotional Aura of tingling, numbness, or tension prior to a seizure occurring. Fear is also associated with FLE where the fear is predominately expressed on the person’s face.”

My Auras, in the best way to try and describe them, feel like a freeze in time. I just am hit was a moment where my brain is telling me, “Woah, stop what you’re doing now”. This is followed by an almost tension release in my head. From the moment this happens, I have about 10 seconds before they start. I’m so thankful this does happen because if I was driving and I had no warning, that could have horrible results.

That’s My Story

If you made it this far into the post, then I thank you for taking the time. I’m always happy to answer any questions people have about my condition or about epilepsy in general. I am incredibly fortunate in that medication works for me. There are people out there that need to take drastic measures (including brain surgery) to be seizure-free. There are even some cases where surgical intervention doesn’t work for them and they continue to have daily seizures.

I would never wish this experience on anyone. Not having control of your body is terrifying and I can only imagine what those around me were experiencing. This is a condition where there is still very little known about it and in most cases there is no known cause. I am one of those cases. I have no family history of it and I didn’t have a medical event prior that would have caused the seizures to begin.

If anyone is epileptic and needs someone to talk to about it, I am always here and willing to offer support in any way that I can. Please don’t be afraid to talk about it and learn more. 1 in 26 people are diagnosed with the condition, so chances are that you know someone with epilepsy.

To all of those that have supported me over the years, I can’t even begin to thank them enough for what they have done. My freshman year will always stick out. I was diagnosed shortly before the year ended and my school went above and beyond in accommodating me and my adjustment period. I’ll always remember two of my teachers. My US Government teacher asked me to talk with him in the hallway and my English teacher happened to be out there as well, and the kind words they had for me have continued to stick with me. I will be forever grateful to them for letting me know that I wasn’t alone.

 

Again, thank you for sticking with this if you made it to the end!