My Epilepsy Story

You’re probably catching on to the fact that I can’t not share my experiences with triumphs and challenges. I love connection and sharing is one of my favorite ways to connect. I’ve shared my struggle with weight loss and losing my grandma. I’ve shared my successes with becoming healthy and embracing my spirituality and unique spirit.

Here goes!

Hello, my name is Alicia and I have epilepsy.

I wouldn’t be me if I didn’t share this too. Where to start? The beginning, of course!

The Year: 1996 (or so)

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Around the time I had my first seizure. Too young :/

  • I was 6 and in 2nd grade. It was show and tell day and I was so excited to share with the class how cool my new Ariel (The Little Mermaid) doll was. My turn never came. Instead, I had experienced my first of many seizures. I can’t quite remember what kind of seizure it was. What I do remember was being taken to the hospital in an ambulance. This memory is vivid and strange. I have this vision of the outside looking in, meaning, when I picture it, I see the ambulance in front of the school. It’s weird because I don’t have the image in my head of the view from inside the ambulance. I’m looking at the scene from above.
  • This was the first time I was hospitalized. I think I stayed a few days. I wasn’t scared, only when I had to go inside the scary MRI tube. The pancake breakfast was pretty good and I scored an awesome new teddy bear.
  • I was diagnosed with epilepsy- a generalized form that exhibited absence seizures, which are mild seizures.
  • I was medicated and tried to stabilize first on Tegretol and it sucked because it made my seizures very frequent. The second drug I was given was Depakote. I don’t remember this, but my dad says it made me very “dull.” My parents decided to take me off all meds. I can’t thank them enough for this. As a child, I had no idea that these chemicals were awful and toxic.

For the years to come (1997-2009), my seizures made limited appearances. Two or three years would pass by until I’d have another seizure. Amazingly enough, I wasn’t afraid of them. I wasn’t taught to fear them. My family didn’t freak out when I had one, so I didn’t freak out. My family never made me feel different or disabled or “less than.”  Additionally. I think what has added to my calmness of having seizures is that I always have an aura. I know when they’re coming, so I have a few seconds to prepare. The aura is hard to describe. It’s almost like I get tunnel vision, my head feels funny and light. Sounds start to quiet down. It’s something you have to experience to understand, but hopefully you never do.

The year: 2010

  • I got really sick. I think I had the flu or bronchitis (another common illness for me partly because of my asthma). I was miserable and managed to acquire a fever of 104. Like so many times before, I had an aura and I knew it was coming. It came and went and I was fine, except for the virus thriving in my body. I made an appointment with my doctor because I wanted her to make me feel better. That’s what doctors do after all! Well, the good ones! Anyway, I told her I had a seizure because a) my diagnosis was in my file and she asked me about it because fevers can be triggers and b) I don’t much find it smart to lie or withhold medical information from my doctor!
  • My license was revoked. I was not put on medication. 6 months went by and I was seizure-free, so I got my driving privileges back. Score!

The year: 2015

  • August 29 – It started out a very normal day. I went to work. Work was crazy, but I can handle that kind of crazy. I do well under pressure; it’s a skill 😉 The only thing that sticks out is that I couldn’t stop working, even when I clocked out. Even when I got home, I had to keep busy. Eventually, I laid down to rest my aching feet. I ended up dozing off for about 30 minutes. When I woke up from my mini nap, I instantly knew something was wrong. A familiar feeling came over me. My aura. “Holy shit, I’m going to have a seizure…” Again, I wasn’t scared or fearful. I was definitely caught off guard, but I felt I could handle it. Yet, this was different. My aura didn’t last a few seconds. It lasted a few minutes. It lingered. It came and went. I very quickly began to feel uneasy. I let my husband know what was going on and I stayed laying in bed waiting for this to pass. He came in to check on me every few minutes. I think this whole process lasted about 10 or 20 minutes. The timing is still fuzzy for me.
  • I called out for my husband, but the words never made it out. I had a seizure. Even though I wasn’t aware of time, this seizure seemed to pass quickly and I was over it. I got up to eat dinner with my husband. Delicious organic mac and cheese! We were talking and I was in the middle of my sentence when the next seizure came. The image imprinted in my brain is my line of vision falling because I was falling out of my chair. I also remember my husband looking at me with fear in his eyes and yelling out to me. I couldn’t move. I couldn’t respond to him. I have no memory of the next several minutes. According to him, I convulsed violently for 5 minutes, my eyes rolled back, I had slight foaming, and my body was tense. Everything he and my neighbor described was very out of character for my epilepsy type. James, you are my hero. You jumped out of your chair to catch me and have been so supportive.
  • The thing I remember is waking up in the ambulance. I had no clue what was going on. The paramedics asked for my name and I couldn’t tell them because I didn’t know. I was terrified. I was extremely disoriented and confused. I kept pleading with them over and over: “I’m scared. I’m scared. I’m SO scared, help me!”  It was the most frightening experience.
  • this was the first time I became afraid of my seizures.

I hope none of you ever have to go through that. I pray to the heavens you don’t experience.

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Two weeks later and I’m only starting to feel normal. I’m off the poison known as Dilantin (300 mg) and I am on Keppra (1000mg). Dilantin is not made for human consumption. It’s straight up poison and I felt like total shit during the short time I took it. I had severe anxiety, frustrating mental blocks. impaired cognition, numbness in my lower extremities, drowsiness, slow, and depression. It stole my personality. I felt like a shell of a person. Part of all of that could have been residual effects of the most insane seizure I’ve ever had, or perhaps both. I’ll never know for sure. It doesn’t even matter anymore because that’s no longer my reality.

I quit my job because I want to be kind to my body and focus on healing. I still go to school 4 days a week and am currently undergoing Yoga Teacher Training for the remaining 3 days in the week.

Now you’re all caught up.

This is what I know, but there is still much I don’t know about my disease.

  1. I don’t know what my triggers are.
  2. I don’t know why my epilepsy seems to be transitioning and gaining strength.
  3. I don’t know how many more seizures still await me.
  4. I don’t know where I’ll be when the next one does happen and I pray to God it’s not while driving or swimming in the ocean or while standing so I fall and hit my head. I pray I’m as lucky as I have been.
  5. I don’t know what the results of my EEG and MRI will reveal. I pray it’s all good.
  6. I don’t know if my children will inherit this disease. It runs in my family.
  7. I don’t know how I feel about having a disability. I don’t feel disabled, but it’s the truth.

I firmly believe in the timing of things. I trust that this is my path for a reason. I will find a way to thrive in this. I will still make my dreams come true. I will continue to love as hard as I can. I will practice yoga. I will walk out of this fire and find my way back to bliss. I will embrace my epilepsy. I will learn to appreciate the unique perspective it gives me. I will memorize the bus routes. I will not let this hold me back. I will advocate for the unnoticeable disabilities. I will spread awareness. I will show gratitude for every day I’m given and live fully.
All this time I’ve been telling myself that my disease has been limiting this life’s experience, but maybe that’s not true. Maybe it’s allowing me to live in a way that I would not have otherwise. My license was revoked, so I have to take public transportation. It’s semi-inconvenient, yet I see more of my surroundings and find myself appreciating the early sun (I have to leave earlier because the bus takes longer where before I would sleep a little later) and conversely with the sunset. I have to be asleep by a certain time, but my body is well-rested…at least until the afternoon when I’m extremely drowsy and I have to take a nap, but then my husband is home and he naps with me or my puppies cuddle me or maybe it’s just nice to be able to take a nap in the middle of the day and not do a damn thing.

Yes, I have epilepsy, and it is a blessing.