Chapter Four: In which I am diagnosed with Epilepsy a week before moving to Massachusetts.

When I was a Junior in high school, I was very stressed. I had busied myself with AP courses and extracurricular activities to the point where I slept and ate little. It was near the middle of the year when I got an exhaustion migraine, so I went to bed. I woke up in the hospital to a bright light and a rather attractive doctor in teal scrubs. My tongue ached and burned, and I was exhausted. I had had my first seizure. Recovery was relatively quick. The worst part was getting over the trauma my teeth had inflicted on my tongue. My sisters didn't sleep as deeply anymore (they shared a room with me and had found me suffocating in my pillow the night of the seizure.), and my friends at school worried, but not much else changed. A month later, like an aftershock of an earthquake, I got a migraine, I went to sleep, and I had a seizure. This time it was much less violent, and I didn't go to the hospital. Instead, I got an EEG, a sleep study with a bunch of goop and wires attached to my scalp. My tongue ached and burned in a familiar way, and I decided it was time to make a change. I started eating regularly and for the next six years, I rarely failed to get eight hours of sleep a night. For a while, I got scared every time I had a migraine. But eventually, the seizures faded away with the label "isolated incidents".

On Father's Day, June 19th, 2016, I woke up in the car. I was disoriented, it was dawn, I couldn't remember anything, and my tongue ached and burned in a familiar way. "I think you had a seizure, Natalie. We're headed to the hospital." Spencer's voice. Driving pas Kneaders in Provo. Seizure. What? This can't be happening. I started to cry. At the hospital, my blood was tested for its prolactin levels. The nurse asked me what my favorite color was and my thought process was, "I love Anne (Whitehouse), she loves nature, therefore my favorite color is green." So I said green. Grabbing a neon green bandage the nurse replied, "I bet this isn't your favorite shade, but it's the only green we've got." I promptly replied, "No, it is not my favorite." Equally frustrating to having a neon green bandage instead of a dark or olive green one was the fact that "The Golden Girls" was playing. At first, it was "I Love Lucy," which I could deal with since my dad liked it so much. But I simply could not stand "The Golden Girls."

Amid my major frustration and mild pain, the doctor came back and affirmed that I had had a seizure. I was so mad and scared. First of all, I was experiencing short-term memory amnesia. And let me tell you, being conscious and knowing you can't remember anything is deeply frightening. I think I tasted, but only minimally, the fear of dementia. While we were in the urgent care, Spencer filled me in on the date, our past week, the previous night, and how he'd found me. He'd waken up shortly after the seizure to the sound of me gurgling. I was choking on my saliva. Frightened, he'd done his best to shift me and clear my airways based on his first aid knowledge and called his dad, who is a doctor. Thankfully his dad answered and directed Spencer to take me to urgent care to test for a seizure. My amnesia made it difficult for Spencer to get me out of the door because, although I don't remember it, I kept disagreeing with Spencer about whether we were going out or coming home and whether or not I should be wearing a bra. Funny in hindsight, I suppose. Second, I didn't want to deal with this again. What if it had never been an isolated incident? What if it was epilepsy? We were trying to pay for Harvard and a cross-country move! I couldn't afford to have medical bills and a lifetime medication requirement. Had I done something wrong? Not handled my stress? Not eaten enough or slept regularly enough? Why now?

We were released from the hospital, and I went back to bed. Upon waking I began to move forward. I needed another EEG, so Spencer and I scheduled one only to be turned away upon arrival because they didn't network with my insurance. So I researched more clinics and scheduled another appointment only to find out an order had never been put in by the ER doctor. So I pulled a few strings, called some people, and finally got in. More goop, more wires, more time spent looking like a Frankenstein. And then we waited. My appointment analyzing the EEG wasn't for a month, so life went back to normal.

Then I woke up exhausted. My tongue ached and burned in a familiar way. And I was pissed. It had been exactly a month since my seizure. What!? Did my brain just decide to make my corpus callosum a freaking fault line? Was I going to have an earthquake in my brain with an aftershock a month later every six years for the rest of my life? I was upset. Spencer was understanding. I was scared. Spencer was worried but reassuring. Meanwhile, my father-in-law kindly sent me an informative and reassuring email preparing me for the possibility of epilepsy.

The morning of my appointment arrived. I went in and was told that my EEG was clear but that my symptoms were undeniable. I had had epileptic seizures. Therefore regardless of the test, I had epilepsy. I left with a prescription for Lamotrigine. I felt fine, I looked fine, I thought I was fine. A little disappointed maybe, a lot in denial. But in reality, I was just on autopilot. It was like I was trying to prove to the doctor, Spencer, myself, who knows who, that I could deal with this. I totally took the news in stride, listened to his explanation of the drug, no sweat. But as soon as we left the office, I said, "I knew it," and became silent. When something that inescapable and previously unbelievable and "other" happens, your brain kind of quiets and sets about making room for your new reality. True incredulity—the kind that eventually demands a paradigm shift regarding one's views of self and way of life because what is so unbelievable is, in fact, true—sounds like silence.


It was at the pharmacy that the situation fully sank in. I think it took about two hours for me to go through the stages of grief multiple times. It was like my emotions were on repeat. Denial, anger, bargaining, depression, acceptance. Denial, anger, bargaining, depression, acceptance. Denial, anger, bargaining, depression, acceptance. My eyes filled up with tears when the pharmacist handed me the medication. This can't be happening, I kept thinking. Then I saw Ghirardelli's Dark and Sea Salt Caramel Chocolate. Turning to Spencer, I asked if he would mind us buying some. He grabbed a bag and put it on the check out counter.

~~~

So coming to terms with being epileptic has been nowhere near as difficult as coming to terms with being medicated.  Lamotrigine, though the safest anti-seizure drug on the market, especially for pregnant women, and only $10 a month in comparison to some which sit at $800 a month, is a seizure medication. And seizure medications always come with a slew of rather frightening, albeit extremely rare, side effects. Seizure medications break the fetal barrier, so if I start Lamotrigine while pregnant or will be on it when I become pregnant, my babies are now at risk for birth defects. Fortunately, all side effects are rare, and the worst defect recorded thus far is a cleft palate. I can deal with a cleft palate. The more frightening side effects are personal. For example, it takes about 14 weeks of slowly integrating Lamotrigine to reach full dosage, which is  150 milligrams twice a day. This slow integration is standard now in the hopes of mitigating the rare side effects, which manifest first as a rash, then developing into exterior burns, eventually becoming fatal. Not only is the drug rather invasive, it is also rather intrusive. No drugs, supplements, or even vitamins can be taken without a doctor's consent while a person is on Lamotrigine. I also can't stop Lamotrigine without doctor's approval. It decreases the effectiveness of my birth control making a second form of protection a necessity, which is more expensive. Yet, the real kicker, is that even with these negatives, the drug is still the safest and least risky of any on the market! So the real necessity is that I not have that creepy rash/burn/fatal allergic reaction so that I CAN take it.

Disclaimer: Lamotrigine is a very legitimate and safe drug on the whole with all potential side effects recorded and mitigated in a responsible way. My further feelings on Lamotrigine largely reflect my own coming-to-terms with taking it as well as my fear of drug dependency and facing this life change in general. This post is also written to portray my thought process, which includes fearful inflation of facts, so please do not base your opinion of Lamotrigine off of my reaction to needing to take it and how I, rather fearfully, interpreted the instruction I was given by my doctor.

I also can no longer drive. Every state has a post-seizure suspension time frame, the highest being a year. And with us about to move across the country, that means that Spencer will have to drive the entire 50 hours by himself. I also can't swim or do obviously dangerous things should I have a seizure till my medication is stabilized.

Now that you know the facts of my epilepsy, I will have another moment of emotional transparency. I am scared of medication period. I am grateful for medication and modern medicine, but drug dependency frightens me, and neurological drugs are dodgy in general. I am scared of deforming my children; will they be bitter if a defect is probably my fault? Will I be a burden on people because I have epilepsy? I feel guilty for the expense I am costing us. I feel guilty that Spencer will now have to drive the entire 50 hours alone. I am frustrated that I might have to take an invasive and intrusive medication for 2190 days for every two days I have a seizure (based on the trend) because my seizures and symptoms are epileptic. I feel grateful that I at least have a diagnosis but frustrated at having a diagnosis without knowing why it is happening. I feel a deep sense of irony at the fact that we found out a week before we moved thousands of miles away, leaving my doctor with little ability to help me. (He told me to get an MRI and gave me his card in case my new doctor should need to call him.) I feel torn between taking my medication because it is prescribed and not taking it because what if I have an allergic reaction on the road and can't find a hospital?

So yeah. I'm an epileptic. In all honesty, it's not so bad once I've set my fears and frustrations aside. My life is virtually the same, and once I get to Massachusetts I'll get a second opinion from my physician there and the necessary tests and will move forward with Lamotrigine with more confidence. The Lord will take care of us, and Spencer will be okay even if the drive is long. At least I know that I can still maintain my studies and grow in intelligence even if my brain decides to "explode in synapse frenzy" every so often. Who knows, maybe this identity-influencing trial will help someone someday. In the meantime, I'm going to buy all the benzocaine, become a diligent side-sleeper, and rock public transit.