In honor of Epilepsy Awareness Day, “Purple Day,” every year I highlight this special day to bring awareness to this disability that everyone has heard of, but probably doesn’t know much about. That is why it took me from a 5th grader in 2010 to 2023 to get a diagnosis. For those of you that have followed my journey all these years, you know that it has been the equivalent to a dirt road after a rainstorm kind of journey, aka, not very pretty. Still, it brought me to my destination being a diagnosis, rather than every misdiagnosis I took for a test drive down that dirt road since 5th grade. Despite finding an answer to my puzzle, that hasn’t meant that my storybook has a big “The End” like I thought it would.
Instead, it’s more like a sequel, because while life is so much better than the first book, there is still an interesting plot I did not anticipate in this second book. I realized that I haven’t quite shared where I am at as of late, so instead of writing a post about FAQs, or a generic post to bring awareness; this year I am sharing my experience with a niche sector of Epilepsy that some may not know about, including me when first diagnosed. Epilepsy is an onion in the sense that there are a lot of layers to it (it’s also pretty stinky and makes me cry when I pretend it isn’t as most do.) Epilepsy is not a “whole” condition; as I said, it is one with many layers to it hence why most people have never heard of my diagnosis being Focal Onset Frontal Lobe Epilepsy…oh and it’s nocturnal, which is why I can drive compared to others. Since this onion has been given to me, I choose to use it as a tool to show others the fact that those with a disability still are fully well & able. Even though I now have to check the “yes I have a disability” box on job applications or documentation; that doesn’t mean it reduces my capabilities at all. In fact, I hate that I have to do that because in my mind…I’m just my usual self that has achieved everything I’ve set my mind to, and even more than that. With that, here’s more of my journey since my diagnosis in 2023!
Drug Resistant Epilepsy
If my story were to be made into a movie; the first movie would end with the last frame being a hero that pushed the bad guy off a cliff using new special powers, but didn’t realize the bad guy was still hanging on to the cliff, ready to come back again. A cliff hanger (see what I did there?) After three years of trying to find the perfect cocktail of medications to control my seizures, the key word is trying, my dirt road hasn’t fully dried after the rainstorm. Since 2023, it was determined I am a part of the 30% of those with Epilepsy that have a form that’s resistant to medication, because I still have my focal seizures when I face my triggers. Drug resistant Epilepsy is defined as being on 3 or more medications at a time, yet none are able to stop the seizures fully. While this sounds terrible, I am grateful that the medications I am on are effective enough to still stop my Grand Mal seizures, which I have been free of for 3 years now!
The drug resistant part applies to my focal seizures that I have been buddies with since 5th grade. I am back to the beginning of my first book (see? A great plot so far.) My triggers are still the same as before being stress, sleep deprivation, sickness, or hormonal fluctuations (good thing I definitely don’t have any of those as a mom of a toddler!) Even if my focal seizures happen a few times a month give or take, it is still classified as drug resistant because I shouldn’t be having them at all anymore while on 3+ medications. This was news to me because my “it’s not that bad” mentality apparently doesn’t apply to any part of Epilepsy. I may be back at the beginning of my first book, but in my opinion, it is different this time because I’ve lost the unknown part, and don’t feel as at war with my brain. It’s more annoying than anything. So, now what? Is this my big “The End?” To be honest, I have no clue because this sequel is still a draft and I’m not sure when I’ll be done writing this book, or if there’s more to this onion.
There are some methods to help those with this kind of Epilepsy, not cure it, but manage it better. I have been discussing these with my neurologist, but my “it’s not that bad” quality of life almost sounds better than the options presented to me even though seizures slowly chip away at my brain. Vagus Nerve Stimulation is one of my options. Think pacemaker, but for the brain. This sends mild electrical pulses to the brain via the left vagus nerve in the neck to help regulate electrical activity in the brain. The vagus nerve is a long nerve that communicates with the brain and body trying to tell the brain it is safe, and to level out the flight or fight response. If the pacemaker implanted in my chest can’t be seen it’s out of sight out of mind right? Well, not really when it sends pulses every 5 minutes lasting 30 seconds every time which temporarily changes my voice making it sound like I’m continuing on my dirt road that I can’t seem to detour off of. Imagine work presentations, or meeting someone new. Epilepsy is not just a physical embarrassment to me, it also mentally/emotionally messes with me despite my stoicism that I am good at putting on for a while. I would also have to carry a magnet with me everywhere I go to move it, or tell it to send more pulses when I feel a seizure coming on. Additionally, it takes a few years to start making a difference, rather than being immediately effective, and I would still be on my medication with potential to come off one or two of them. Speaking of effective, it has about a 60% effective rating. Now, I generally am one to think positively about potentially dangerous risks, (this is why chucking flips on a beam at gymnastics with no fear of smashing any and all parts of my body was no problem for me,) but I can tell you that I am not quite sure I want to find out if the benefits outweigh a few seizures here and there along with taking horse pills for the rest of my life. Change is scary. Change can be bad. Change can be great. Change roulette anyone?
My second option presented to me is Lesionectomy brain surgery to remove the damaged part of my brain that causes the seizures. This is 99% effective for those with focal seizures, and I would get to come off all of my medications! The part of my brain that causes all this chaos has already been pinpointed, and all they would have to do is simply drill into my skull real quick, pick around in my frontal lobe, and grab that little piece like the game “Operation.” Remember that game? I am fully aware there are neurosurgeons out there who have done this successfully which gives me comfort (the part where I may lose some hair in the process does not give me comfort.) To be transparent, I actually have considered this one, because removing the tiny piece of my brain removes huge things; a disability, fear, pills, doctors, and gives me a truly “normal” life like all my peers have lived the last 10+ years. I can’t comprehend what life would be like without Epilepsy, because it is such a big part of my life story. I would get to live the majority of my life without it and call the last 14 years the minority. What would you do in this situation? Let’s take a vote!
Life after Grand Mal
Now that I’ve got the biggest update and plot to my sequel covered, let’s fill in some of the chapters, shall we? Wow, life after dealing with my Grand Mal chapter in my last book is like the best onion ring you have had (I don’t know how long I can keep up this onion analogy but I’ll try my best. This may be an unpopular opinion but the onion ring tower at Red Robin is my favorite.) Now that I have started this new chapter I got married, Casey boy joined us…not much I guess. I also no longer have to be scared of basic human activities being the following:
Taking a rest day. Those who know me well know that I go to the gym or workout every. single. day. This is partly due to the fact that I trained in a gym for 20 hours a week pretty much my whole life, so I don’t know what else to do in my free time; but it is also out of fear. In the past, if I did not move my body that day, my seizures would flare up. Try to imagine explaining that to someone- I have gotten a lot of weird responses to that. Movement releases pent up energy in my nervous system because it is my stress relief, but at the same time, I can’t tell you why this relieves seizures. It was at the point where I had to workout on vacation, or sick. My family luckily was well aware of that and has always helped me find a way to do this even though others thought I was bonkers. Epilepsy is a “won’t believe it until you see it” kind of condition. Now, I can go a day without working out and I have no issues. My body can finally REST, now that my brain has learned to rest, too, and this is due to my medications helping me despite being partly drug resistant. Lauren and rest day used to be water and oil, but now that is changing to onion and oil (that was bad, I’m done, but it is still a great combo right there.) I am grateful to not have to drag myself to what I have adopted as “my stair stepper” at the gym.
Sleeping. I can now go to bed without being the slightest bit scared of what will happen to me during the night, well actually, if I watch something scary before bed I still think a monster will get me despite being 27 years old. Before my Grand Mal seizures were treated, I would stay up until midnight or later to prevent going to sleep because of the intense fear of going unconscious while living alone. This happened a few times and even thinking about those times still makes my heart race no matter how far in the past they are. Zach happened to get one of my seizures on video, and I can’t bring myself to watch it, probably never will either! I don’t even know how to describe the feeling of a seizure, but feeling my eyeballs roll back in my head before the lights turn off to the basement of unconsciousness is something I wish I didn’t remember. Once I’d “come to” I’d then resume my regular day going to work and no one knew what I’d gone through all night. Days don’t stop for you when you have Epilepsy, and explaining to a boss that you have nocturnal seizures just like a bat is nocturnal is not very comfortable to do without tearing up a bit (insert onion here) because no one truly does understand. I am so thankful these have been out of my life for 3 years now, because I can focus on being the best wife, mom, and I can sleep peacefully rather than in all seriousness wonder if I will wake up in the morning. Simply put, life without worrying about Grand Mal feels like I am on spring break in Florida all the time, even when everything else around me may be a dumpster fire! It puts things into perspective really quickly for me.
- Traveling: Before treating my Grand Mal seizures; I missed a family member’s out of town wedding while my whole family went, refused road trips with friends, and dreaded any vacation to what would be everyone’s best vacation ever. I really had to consider studying abroad for two weeks in college, and I almost didn’t take that once in a lifetime trip. I despised going anywhere, because if I wasn’t at home overnight, I would flare up. Even if I sat too long for road trips to Kentucky, I would flare up. There is a common theme between all of these chapters of everyone looking at me like I am talking backwards when telling them what sets my seizures off. Growing up with this was all about learning to not take personally what others thought which was something I never mastered. Well, no worries now because the only struggle I had traveling lately was forgetting underwear on my honeymoon.
- Explaining my condition: This is something I almost forgot about that has really changed since my diagnosis. Before finding out I had Epilepsy, explaining that I had a movement disorder, something called Functional Neurological Disorder, was so hard to do. It is not well known, so even explaining to general doctors what I had felt like trying to translate spanish to english. It isn’t a disability, therefore I couldn’t tell my work that I had a disability, but I still needed accommodations. I won’t go into FND that much, but now I simply can say “I have Epilepsy.” No explanation needed!
- Eating dessert: I made this one up, this would be really unfortunate.
Well, another Epilepsy Awareness Day is in the books, written into my sequel one might say. I still continue my tradition of working with the state of MN to light up the Lowry Avenue Bridge in honor of today. Even though people driving by have absolutely no clue why it is lit up purple, maybe they just think it looks pretty or is Vikings colors; it gives me so much pride that maybe it makes even one person more aware. Seeing my disability in a beautiful form of light is not something I often do, but gives me a little boost of hope every year being able to view it this way. I may not know why God has given me this purple onion, and I may not ever know, but for now, I will continue to pursue all the things I set out to do!
~Lauren
Life of Lauren 