Initial Diagnosis

It all started in the early morning of November 11, 2006 while getting ready for work. I was 23 years old and in the bathroom completing my morning routine when I passed out, waking on the bathroom floor with an immense headache. Tears instantly began to fall from my eyes as I knew something was not right. I was living in a house with three other housemates at the time and one heard my tears. She comforted me and offered to call my manager to tell her I would not be in for work. Meanwhile, I called my mother who drove an hour from her house to help. She took me to a walk-in clinic who instantly called 911. I was transported by ambulance to a nearby hospital where I underwent CT scans and a spinal tap to check for blood in my brain and spinal fluid. I remember hearing the calming sounds of birds chirping through the ER sound system. However, my head was in so much pain I just wanted the birds to go away. By this time my father had joined my mother in my makeshift room in the emergency room. Due to the pain I was sleeping a lot. However, when I slept my fingertip heart rate monitor placed on my right hand kept falling off, causing the machine to beep. Every time the machine flat lined my father jumped up to see if I was OK since my eyes were closed. I then woke up, readjusted the pulse indicator and went back to sleep, only to repeat the cycle a few minutes later. After several hours in the ER, the doctors came in to explain my test results. The spinal tap showed no blood in my spinal fluid which was a good thing, but my CT scan showed the mixing of grey and white brain matter, something that could cause seizures. I remember thinking, "That is good news because I don't have seizures." Like most, I associated the term seizure with violent convulsions and knew I didn't suffer from those. I was discharged from the hospital with orders to follow-up with a neurologist and a cardiologist as my collapse in the bathroom could have been caused by a seizure or heart problem.

In the months that followed I had an MRI and EEG through the hospital referred neurologist. MRI confirmed my brain abnormality, though the EEG did not document seizure activity, leaving the neurologist without a confirmed diagnosis. The doctor explained that my abnormality is common among people but few are aware of the abnormality due to it not affecting their bodily functions. It's a developmental problem occurring during gestation. Basically, parts of my brain did not migrate to the appropriate area while I was developing. Since I'm an identical twin, I jokingly blamed my sister for kicking me in the head too many times while in utero. My condition is not hereditary and my twin sister has not been diagnosed with the same abnormality.

Per discharge orders from the ER, I also saw a local cardiologist. He ordered a 24 hour EKG monitoring of my heart to see if my heart caused me to pass out. He also completed an ultrasound of my heart. I recall having to control my laughter while watching the technician investigate my heart's condition. Seeing my heart beating on the monitor as the technician worked was a wild experience and for some reason my reaction was to laugh, not uncommon for me since I love to laugh. I also completed a stress test and a tilt test for the cardiologist. The tilt test was to see how easily I pass out and how well my heart circulates blood all over the body. I recall laughing at the beginning of the test as I was strapped down to a flat board as if I were in an insane asylum. Once all three straps were secured, they attached blood pressure cuffs to both arms and tilted me at a 90 degree angle. Very uncomfortable but then again I was also strapped to a board and could not move. Since I hadn't eaten anything all day in preparation for the test, it did not take long for me to begin to feel terrible and like I was going to faint. After a few minutes of not fainting but feeling horrible, the doctor placed nitroglycerin into my mouth to expand my veins and encourage fainting. I instantly got a terrible headache and felt very numb. The doctor could see I was about to faint but yelled "Stay with us!" "Don't shut your eyes!" Though I came very close to fainting, I fought through the feeling and remained aware. As a result it gave the cardiologist no new information or explanation for why I passed out while getting ready for work. I recall being physically and emotionally drained immediately after the test. I felt a rush of anger and tears poured out as the nurses brought me cookies and juice to recuperate after the test. I was frustrated. After many visits with two different specialists I still did not have an answer as to why I fainted five months earlier. However, I didn't walk away from the cardiologist without some information. The ultrasound of my heart revealed a leaking valve. It is again very common and considered normal among doctors.

After receiving no answers from the specialists I returned to my normal daily routine, but I did make sure to eat breakfast and have a mid morning snack at the suggestion of the cardiologist. He thought lack of nutrition had caused me to faint.

It was now five months since I had collapsed and I generally felt good. I had begun to exercise and eat more per the cardiologist's orders. However, I began to notice an increase in sudden and unexplained spells of nausea and drooling. I had noticed these spells since my senior year of high school and thought little of them. I would suddenly be hit with nausea, spit up saliva and would be on with my day. These occurrences were so infrequent I thought they were caused by consuming spoiled food. However, five months after collapsing I noticed the spells had returned and were much stronger. No longer could I just spit up and move on with my day. I now had to rest after each spell, sometimes sleeping for hours. These spells often hit while I was in the shower, brushing my teeth or sleeping. One morning in April of 2007 I was hit with a very strong nauseating feeling and was forced back into bed as I had no energy. At that point I was fed up. I had been to the neurologist and cardiologist and both found nothing of significance. On my way to work I called my primary care doctor and saw him that afternoon. After explaining my spells he believed I was having seizures and referred me back to the neurologist I had previously seen.

After meeting with the neurologist and describing my "new" symptom of sudden nausea and drooling he ordered a sleep EEG; a test where I had to be sleep deprived with no caffeine. I was forced to stay up past midnight and rise by 5am. I was not initially concerned by the sleep deprivation as I pulled short nights frequently in college. However, I felt horrible after not sleeping. Regardless, I decided to go to work until my afternoon EEG. I thought working would keep my mind off my urge to sleep. It didn't and I remember frustrating my managers as I was useless the entire day due to the exhaustion. Finally, it was time for my EEG. The technician attached the many sensors to my scalp and instructed me to crawl into the comfy double sized bed. She dimmed the lights, left the room and instructed me through a series of behaviors using the room’s sound system. She instructed me to breathe as if I were blowing out a candle over and over again. I believe this portion of the test lasted 3 minutes. This exercise caused me to feel lightheaded and weak. The flashing light portion of the test followed. At last, all exercises were over and I could sleep for thirty minutes. Since I was so sleep deprived I instantly feel asleep. I then woke with the sudden nausea and drooling and screamed for help. The technician came over the intercom to calm me down and say she would be in shortly. While she removed the sensors from my scalp, I asked if she saw anything change on the monitor. Though she couldn't clarify if it was a seizure, she did say she saw my brainwaves change. Yes! What I had experienced for years was finally captured. I don't think I had ever been so happy to be nauseated and drooling in my life.

Five weeks after the EEG I met with the neurologist for the results. He confirmed that I suffered from simple partial seizures. I was so relieved to have an answer. On May 15, 2007, almost exactly six months after collapsing in the bathroom, I was officially diagnosed with epilepsy. I was placed on Lamictal and told I would have to take medication the rest of my life. I joked among friends that I was now a lifetime drug addict. However, the laughs didn't last for long. I soon realized being epileptic required more than popping a few pills a day. It wasn’t an easy reality to accept.