It all started September 7, 2007. It was a perfectly ordinary day in classes at the university except that I was walking around with the worst headache of my life. Before then, I had never experienced a true headache. This was a deep, penetrating pain that seemed to affect my jaw and the back of my head and neck. I drove myself home that afternoon in a pain-stricken daze. When I arrived I told my mom what was happening, and that this was the worst pain I had ever experienced, much worse than the severe menstrual cramps I was accustomed to getting each month. She instructed me to take some tylenol, rest, and apply ice to the back of my neck. Hours later the pain had grown to be unbearable despite my efforts to follow her sound advice. We were both growing worried, and late that Friday night, my mom called my aunt and uncle (a medical expert) for some advice. His advice was to take me to the nearest emergency room since I had never experienced anything like this before in my life.
My aunt and uncle arrived and drove my mother and I to the hospital, my first emergency room visit among what would later become a series of them. The waiting room was not only crowded, but thoroughly traumatizing. Prisoners came in shackles, gang members came in with bloody wounds. Needless to say my "headache" paled in comparison. Thank goodness my persistent uncle accompanied us or I am convinced I would have waited there forever. With his help, I was finally taken to my own room where a series of tests were performed including a CT scan of my head and bloodwork. Everything came back normal and soon a nurse was administering what she called an intravenous "migraine cocktail" after they concluded that it was probably just a typical migraine headache. The iv didn't even touch the pain. I was scared. The cocktail had benadryl in it and I broke out in a red rash across my chest. The pain was more intense than ever. I was exhausted and just wanted to go home, so I told the nurse I was feeling better, although it was not the truth.
That night I slept on the couch for an hour or two, convinced that the pain would be gone by morning. It returned with a vengeance upon awakening. And that morning was my great aunt’s funeral. She had died of pancreatic cancer a week earlier. She was an amazing woman and there was no way I was going to miss her memorial. So I took some more tylenol and went, hospital bracelet still on my wrist and all. I was scared I might die myself right there at her funeral. A distant relative gave me some motrin, insisting that tylenol simply wasn’t strong enough, but the anti-inflammatory properties of ibuprofen would surely do the trick. I obliged. It didn’t help at all. The next day was equally miserable except now I was getting sharp pains in my chest and my heart was racing.
By Monday morning I was at my dentist’s office out of desperation. I now had the headache, chest pains, and swelling around an impacted wisdom tooth. He took x-rays and sent me to an oral surgeon that afternoon for an emergency surgery. Not only were all four wisdom teeth impacted, but I had also developed an infection on the left side and there was a large cyst wrapped around my jawbone which would also be removed. I was terrified. Before that weekend I had never been to a hospital and never had any kind of surgery in my life. I remember little of the surgery except that I was relaxed afterwards and felt better temporarily because I had finally slept, although the sleep was anesthetically induced. Now I was convinced I knew what was wrong. It was just an infected wisdom tooth and I would be back to my old self in a few days after recovering from the surgery. Not the case. I was back in the hospital just days later, this time with heart problems. Tachycardia they called it. My tests came back normal except for slightly low potassium and slightly high blood sugar. The doctor concluded that I was probably just dehydrated after losing a significant amount of blood during the surgery. So they gave me an iv, told me to relax, and sent me on my way back home. I was back in the ER a week later. This time transported by ambulance. My life kept becoming scarier and scarier and filled with too many memorable firsts. First emergency room visit, first surgery, first ambulance ride. This time I was given a beta blocker intravenously and instructed to see a cardiologist and then sent back home again to deal with it on my own.
My cardiologist was a nice man with rugged good looks. He interned under Dr. Oz at Columbia University so in my book that meant that he was going to help me just as Dr. Oz miraculously helps his patients on TV. He confirmed that I had resting tachycardia of about 120 beats per minute. He gave me a holter monitor to wear home from the appointment and made a follow-up appointment with an electrophysiologist a few days later. He explained that although he would love to help me, he was a plumber and not an electrician so I needed to see an EP instead. Finally a doctor who spoke a language I could understand. I also went in for an echocardiogram which turned out to be normal. The holter monitor, however, did not. Perplexed, my EP performed a repeat holter just to be sure. Upon that also returning abnormal results, he concluded that whatever this was it wasn’t actually my heart, which was structurally sound according to the echo and beating with a regular rhythm according to the holter--it was just beating much too fast. One of the first things the EP said to my mother, grandmother, and me was that I was probably suffering from some form of autonomic dysfunction. And after listening to my chest he said that my autonomic nervous system was very sensitive. At the time I dismissed his claims because I did not know what he was talking about and it sounded like a cop-out because he couldn’t figure out what was really wrong with my heart. I sure wish I would have listened to him more carefully and done my research back then--it may have saved me a lot of needless wondering and suffering in the long run. But I am stubborn, and wanted to be absolutely certain it wasn’t my heart. He gave me a low dose of the beta blocker atenolol, instructed me to see a pulmonologist, an endocrinologist and an internist. Great. More appointments and more tests. Just what I wanted to do when I could barely muster up the strength to walk from room to room in my own house.
The next few months I endured an exhausting series of appointments and tests followed by more follow-up appointments. My pulmonary function tests were normal. My updated blood work was relatively normal except for low potassium. The endocrinologist believed I may have suffered a bout of subacute thyroiditis although my thyroid bloodwork all came back normal. His best advice was to stay on the beta blockers and to try sleeping pills at night to allow my body to rest. I was scared to do so, but I resorted to taking the ambien he prescribed because I was half-crazy from consistently being awake for up to four days at a time without a wink of sleep. I couldn’t sleep partially because my heart was running a marathon, but partially because I think I was scared to sleep. Scared that if I went to sleep I may not wake up ever again. The tachycardia and palpitations scared me so much I resigned myself to the fact that I might actually be dying. No one could seem to really figure anything out or come to a firm decision as to what was going on with my heart. And nothing could alleviate my symptoms.
Despite all my overwhelming health issues, I was determined to finish college and graduate on time with my peers. I had to rely on family members to drive me back and forth to the university. And on some days I had to have my mom drive me from class to class on campus because I could not walk that far. I had to take elevators instead of the stairs. And I was still exhausted. All the time. My grandmother often read my literature books aloud to me when I was too tired. It is amazing how certain family members rallied to support me when I really needed them, and I am forever grateful. My grandma and grandpa were so supportive although they were old and not in the best health themselves. At one point I remember telling my grandma, a former RN, that I felt like I was fighting for my life. And she said, “You might be.” I think she was afraid they would lose their only granddaughter to this mysterious heart problem. My grandpa volunteered to drive me back and forth to school and work whenever I needed him to. He insisted he needed something to do anyway and liked getting out of the house. My professors were accommodating for the most part and allowed me to make up all the exams and papers I had missed during the prolonged absence.
By the time the second semester rolled around, I was starting to feel a little bit better on the atenolol. Not the picture of health or energy like the old me, but the new me was adjusting, and beginning to resume normal activities slowly. Although I had to drop my ballet class the previous semester, this semester I enrolled in yoga. And although I did a lot of the moves modified, I still did them. I was even back to work again, hosting a talkshow called Health Watch. Ironic, I realize. But at least I could still help others by arming them with information. Topics I covered ranged from things as simple as dental health to as serious as eating disorders. My voice was being heard again. I was making a difference the best way I knew how. And I was getting positive feedback on my programming, even winning a few prestigious awards in the process.
At school, academically, I was excelling. But physically I continued to be tired and fatigued with a racing heart. Sitting in class I would become so lightheaded or ‘woozy’ that I fought to stay conscious by fidgeting vigorously. I later learned this was my body’s natural instinct to stimulate circulation and thus prevent or prolong syncope. The same woozy sensation would hit me every afternoon at work at about the same time each day around noon. I couldn’t figure out why. I described it to my EP as the sensation you experience when an elevator stops and goes up a few inches and then drops back down quickly again before it stops. A similar sensation to the waves you feel under a boat. I couldn’t figure out what provoked these odd sensations or what I could do to stop them. My EP told me to record these dizzy spells and pay attention to exactly what I was doing when they would come on. They happened at my desk at work or school, while driving, and while standing around chatting with friends or coworkers. It never occurred to me to sit or lay down when it happened.
Fast forward to May 18, 2008, and I am graduating from the university with honors. My entire extended family and most of my friends are in attendance at an outdoor ceremony on a hot and sunny Sunday afternoon. Graduates were lined up outside an hour and a half before being seated for the ceremony. I was exhausted. Hungry, thirsty and nowhere in sight to get any real food. I snuck a few snacks and a small water bottle in my purse which I hid underneath my gown. Although food and drink were forbidden at the ceremony, I knew I would never last that long without food or water. After nearly two hours of standing, we were finally led onto the field and seated for the ceremony. Not long into the program, my friend sitting to the right of me was rubbing my knee vigorously in an attempt to wake me up. I had passed out right there at my own college graduation. Luckily I woke up and she gave me the rest of her water bottle to finish. Although I felt like I had been hit by a truck, I snapped out of it in time to walk up onstage and collect my degree. I had apparently only been unconscious for a brief minute but it was the first time I had ever passed out, and I was in shock. At that point, I knew I needed some firm answers. I needed a real diagnosis. And more importantly, I needed to know what it would take to just be normal again. Passing out at my own graduation was humiliating. Of course my peers assumed that I must have been drinking before the ceremony like the rest of them were. Little did they know that I was completely sober and yet walked around feeling like a drunk every day of my life since September of 2007.
During my next appointment with the EP, I told him (in tears) what had happened at graduation. Luckily, he had already done his homework and explained to me that he thought I had something "interesting" called POTS, a form of autonomic dysfunction like he suspected in the beginning. He read off a long list of symptoms to me which were all too familiar: lightheadedness, fatigue, tachycardia, brain fog, anxiety, cold extremities, facial flushing, and syncope. The diagnosis fit me to a tee. I decided to listen to him and visit the POTS Place website he referred me to in order to learn more about this strange illness I was living with. He performed a poor man’s tilt test right there in his office and the results confirmed his initial hunch: my fluctuations in heart rate were posturally induced. While my vitals were completely normal while lying flat, upon sitting upright and standing they were off the charts. He switched my beta blocker to propanolol, a shorter acting medication that I was instructed to take four times daily.
So although it took nearly a year and at least a dozen different doctors, I finally had a real diagnosis. Something that made perfect sense. Something there was no cure for, but at least there were palliative measures available that could potentially minimize or alleviate my strange symptoms. I had a renewed sense of hope. I began sharing the news with trusted friends and family. With the exception of a few relatives, most of them were entirely supportive. Especially my amazing mom, who was with me every step of the way. Watching her only child grow sicker and sicker had been her worst nightmare come true. The harrowing experience may have even been harder on her than it was on me. It would take me many months to adjust to living with POTS and learn the many tips and tricks that help me cope and function more normally today. I look back on that horrific year, the entire 22nd year of my life, and am so thankful that I survived it. That I have gotten better. And that I will continue to improve as time goes by, whether that means adapting my life to live with POTS, or maybe someday, undergoing treatment that will cure this cruel disease once and for all.