Blog #14: Being Epileptic

I don't remember my first seizure; I don't remember any of them actually. I can tell you what happened right before and what I remember after coming to, but not the actual act of seizing. From what I'm told, it's very frightening to watch. And from what I've felt after, it's very painful- both physically and emotionally. I'm epileptic. If you've been following my blog, you've read a lot about my struggles with mental health, (See  Being Bipolar and The M Word- Manic) but I haven't yet touched on my most severe physical ailment. That is what this post is about- my journey with epilepsy, and everything that entails.

My first seizure happened back in 2015. I was with my boyfriend (now husband), handing out flyers to promote his and his dad's newly formed landscaping business. All I remember is walking, then a second later looking up, and I was somehow on my back on the sidewalk. Slowly paramedics and my extremely worried boyfriend came into focus. I had no idea what happened, but I definitely didn't think I had a seizure. I thought maybe I fainted, and couldn't understand all the commotion. So much so, that I insisted I was fine, and refused a trip to the hospital. Then Nick (the hubby) explained it to me. I was in denial, I mean, I had no recollection of any seizure happening, and I explained it away as him being dramatic.

Then it happened again. This time in our apartment, and it was painful. According to him, the signs that I am about to have one are me looking up and to the left, and then just fully falling and seizing for a minute or so. I just remember coming to and feeling pain all throughout my body, then I noticed my lip was numb- I had bitten my lower lip during the episode pretty hard. It stayed numb for almost 2 weeks, and I thought I would never feel it again. That's when I accepted it, I'm having seizures. 

It's truly a scary feeling not knowing when the next seizure will come. For me, I lose total consciousness during, so it feels like a second, when it's actually minutes. Eventually I learned they were grand mal seizures. According to Mayo Clinic's website, "A grand mal seizure causes a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures." It "is caused by abnormal electrical activity throughout the brain. Usually, a grand mal seizure is caused by epilepsy. But sometimes, this type of seizure can be triggered by other health problems, such as extremely low blood sugar, a high fever or a stroke" (Click the link above to read full article) 

The next, and probably most embarrassing one happened at work. I had just started a new job, and had only been working there for maybe a week. All I remember is typing on my computer, then being on my back and seeing the ceiling, EMT's, and worried co-workers looking down at me. As I put two and two together, I realized it was serious and I was taken by ambulance to the hospital. That's when I had to face the fact that I'm having multiple seizures in a short time span, and something is wrong. I know it shouldn't be embarrassing, but I found myself apologizing to my co-workers upon returning to work the following day. They obviously told me not to worry, and each told me their account of what happened. Apparently I was seizing for a full 4 minutes. I couldn't believe it! I insisted they were exaggerating, but they said no, that is actually how long it lasted, and it was bad! It's actually very helpful when people describe what happens while I'm unconscious; That way I know the signs of a seizure coming on, and for how long I actually convulse.

I tried not to freak out in the hospital as I got every test done imaginable. After numerous blood and neurological exams, an EEG, a CT scan, and an MRI, they found nothing. No brain tumors, and nothing to explain the cause of my seizures. The neurologist at the hospital told me I was lucky to live in South Florida because the University of Miami has one of the best neurology departments in the country. I made the soonest appointment. After meeting my new, highly skilled doctor from UM, he explained in detail what epilepsy was. I was very misinformed up to that point, and that was the first time I heard my diagnosis out loud. I said, "oh I'm epileptic?", in a confused way. 

I had only known one person who had the same disorder, a friend from Middle/High School, who's seizures were brought on by flashing lights. I remember growing up, and him having to be excused from certain films or presentations; And senior year, he wasn't allowed to watch Blue Man Group with the rest of the class for fear of inciting a seizure. I always felt so bad that he couldn't fully participate in certain activities.

So in my mind, I thought epilepsy was only brought on by lights or flashing. My neurologist patiently and thoroughly explained that all epilepsy meant was that you have multiple seizures. He also explained how my life would be different from then on. Hearing all this, I was kind of relieved and also very disappointed. Relieved that I knew more about my condition, and disappointed at my new-found restrictions. I could no longer drive- that was probably the worst one, and I would have to take a daily medication and undergo further testing to try and figure out the cause. The good news was there were no tumors found on my brain initially, but we still didn't know why it was happening. 

My doctor told me that I might have a tiny lesion or tumor somewhere on my brain that can only be detected with certain tests; Or it could be substance related (drugs/alcohol), and/or the result of medication withdrawal from Xanax. All of those were possibilities, I was not living the cleanest life before the seizures started. But one plus was that a medication I was already taking in low doses for my Bipolar 1 was also used in higher doses to treat epilepsy! This meant I could slowly increase what I was already taking (Lamictal) and it would help both my disorders. I try to look at the positive, in this situation, and in life in general. What does stressing about all the "what-if's" do for you? Nothing!

That's not to say I wasn't upset- I was. I felt helpless and angry. If you know Florida, you know driving is pretty essential. The public transportation is not the best, and everything is so spread out, it could take you over an hour on a bus to travel what would normally be a 15 minute car ride. So, to not be able to drive, especially when I had just started a new job, was very frustrating. But I get it, it's not safe to chance it. I can't tell you how scared I was driving the 30 minutes (all highway) to get to work, not knowing if I was going to black out and crash- possibly hurting myself and others. I only did it a couple times, but still it was not smart at all. My husband had to drive me every day and pick me up, which was far from ideal!

Other than that annoyance, I had to cope with a whole new diagnosis. I had to first accept it, then deal with it proactively. Which is what I did. I don't know if it was due to my lifestyle change, or the medication working, but I have not had a seizure for the past 2 years! When I was pregnant with my daughter, I once again had to deal with the question of whether or not my medication was harmful to the baby or not. My goal was to get off everything I could, and I did just that. I went from 4 medications to just one (for Bipolar). That included stopping my anti-seizure medication. That was actually way riskier than I had originally thought. I stopped at the advice of my Psychiatrist, without first consulting my neurologist. I DO NOT recommend doing this! 

Fortunately I was fine and so was my baby, but I later learned that I was putting myself at risk. It is very dangerous for a pregnant woman to have a seizure, and can result in early delivery and possible loss of your baby. I thank God that didn't happen. I definitely learned A LOT from that pregnancy, and especially what not to do this time. I am currently considered a high risk pregnancy, due to my epilepsy and previous preeclampsia (See blog post 8: C-section vs Natural Delivery) with my first delivery. My OBGYN says I'm on the lower end of the 'high-risk' spectrum, but still I have to be cautious of seizures, no matter how long it's been! And medication wise, I am still not taking my anti-seizure medication.

I last saw my neurologist a year and a half ago, coincidentally on the same day I delivered my daughter (6/27/17). He checked me out, performed some in-office tests of my motor functions, and was happy overall with the results. He was not, however, happy that I was no longer taking my medication and recommended I start again immediately. So, since later that day I ended up having an emergency c-section, the hospital re-started my previous dose of Lamictal. I actually ended up breaking out in hives, which could either be from the stress I was under at the time, or from suddenly starting such a high dose of a medication I was not on for almost 9 months. Either way, I stopped taking it the minute I left the hospital, and haven't started it again. 

Again, thank God I haven't had one in two years, but I definitely recommend following any and all directions from your physicians! Today I am happy that my pregnancy has been going so well (minus some major nausea, vomiting, fatigue and heart burn all throughout my second trimester), and I am grateful it has been so long since my last seizure. I now don't stress about it day to day, but it is always in the back of my mind, and comes up when I have to talk about my medical history in regards to my children's health, or when I write a blog all about it! ;)

So what have we learned? Seizures are a serious medical condition and can result in very serious consequences if not treated properly. Also that it's extremely scary to not know when the next time you may fall and convulse uncontrollably. It's no fun constantly looking at your surroundings, picturing objects you could possible hit when falling/ seizing.

Seizures can kill you and you really need to heed all advice given to you by medical professionals. At the same time, you cannot let fear take over and completely paralyze you. You have to live your life, regardless of what could possibly happen. Just take things as they come, and focus on the positives. That's all you can do, and that's the way I've chosen to deal with my epilepsy.

Have you or someone you know ever had a seizure? Or have you ever witnessed one occurring? Let me know in the comments below! Also tell me what you think of this post (be honest) and what you want to see next! Thank you so much for taking the time to read this! If you are new, welcome! Take a look around and read some of my other posts. Please share if you liked it and sign up below if you want to see more from me! If you've been following along with my blogging journey, thank you again! I say it every post, but it truly means the world to me when people read/ support my blog. Also any and all feedback is much appreciated! I hope you got some insight into the life of an epileptic, and about the highs and lows of having this condition. Until next time...

Love always,