Saturday, February 26, 2022

My Epilepsy Journey: Part I


Good Morning, 

Epilepsy. It's a medical condition that rarely crossed my mind until it was pushed to the forefront of my life two years ago. You may have noticed that my blogging has slowed down quite a bit, and that's because it's been a bumpy ride, coping with my new diagnosis, trying different medications to find one that best controls my seizures, and -naturally- reading all the literature I can on the condition. 

Due to all the stigma that people still attach to epilepsy, I have been hesitant to share my story. However, I know how much I have been helped by reading others' stories in books, social media posts, and various epilepsy groups.

My world drastically changed one November day. I was at work, sitting at my desk and chatting with coworkers. There was no warning, and I felt perfectly fine. Honestly, I felt more than fine. That morning, I had woken up energized and looking forward to the upcoming holidays. 

Then, I woke up on the floor, with no memory of where I was or how I got there. My initial reaction was confusion and panic that I somehow fell asleep at work until I saw the terrified faces of my coworkers as they gathered around me. I knew then that something was wrong. Fortunately, one of my coworker's wife is a nurse, so he knew the telltale signs of a seizure. 

About two years earlier, I had dealt with a similar episode but had been assured by the ER staff that it was a PNES episode (a type of non-epileptic seizure) that was likely brought on by my blood pressure dropping. They advised me to stay hydrated and add salt to my meals to prevent another "incident". This second seizure was a frightening sign of something more. 

I made a quick phone call to my mom and asked her to pick me up at work. She was confused at my middle-of-the-day release but agreed without hesitation. As news of my seizure spread down the hallway and around the office, people began to stop by to check on me. Finally, my mom arrived and we made the fifteen-minute drive to the ER. Once there, the staff immediately began a battery of tests to rule out drugs (stigma again), pregnancy, low blood sugar, blood clots, brain tumors, and all the other things that could lead to a seizure. 

All the tests came back clear. leaving me both relieved and perplexed. This seizure apparently hit me out of the blue. After X-rays, an MRI, a CT scan, and countless vials of blood, the hospital staff called in a neurologist. He asked me about my medical history, focusing especially on the previous "seizure-like" episode. After a serious discussion about the risks and side effects of the medication, I was given a prescription for my first anti-seizure medication and informed that my driver's license was under medical suspension for six months minimum. 

The following weeks were a nightmare. This new medication made me dizzy, nauseated, and left my mind in a constant fog. However, after the first week, I noticed a strange phenomenon. For years, I had bitten my tongue or cheek in my sleep at least two or three nights a week (sometimes more). By the time I had been on anti-seizure medication for a full two weeks, this behavior was gone completely. 

For the first time since high school, I didn't have to be cautious when eating salty foods, making sure to eat on the non-bitten side. At my follow-up appointment with my neurologist, I made sure to mention this bizarre fact. 

After a few more questions, I was diagnosed with nocturnal epilepsy, a somewhat rare subset of epilepsy disorders that mostly strikes while the patient is asleep. Even though it was frightening to have an official diagnosis, combined with the knowledge that I was now going to have to take daily medication for the rest of my life, it helped to know that all the strange things I'd dealt with (panic attacks, bites in my sleep, sleep paralysis, constant fatigue, etc.) were now explained. 

Over time, I adjusted to the new medication, and though sometimes I still have "break-out" seizures- seizures that occur despite medication- things are so much better than they were before. The stress of knowing that I have a chronic condition is real, although the awareness of not being alone helps. 

I intend to continue posting about my epilepsy journey, both for myself, and to help others who are going through a similar battle. I will share helpful books I've read, apps I use, and just talk about daily struggles. Reading others' stories has been a huge help for me, and I hope that by sharing my story, I will be able to help someone in the same way!

Thank Y'all for Reading! Stay strong. :)