The Long Version of the Story

Unbeknownst to me, the road to finding a diagnosis started when I was 16. I was taking a medication (that I now know is infamously tied to migraine as a medicinal trigger) that left me fatigued with joint stiffness and body aches. After stopping the medication, I returned to normal health until returning from Ecuador in my senior year of college. I had developed extensive GI issues while in Ecuador, all of which remained once I returned to the U.S. I also started to have trouble sleeping and felt physically anxious or wired most of the time. After graduation, I noticed that I would become easily fatigued while hiking, and it took longer to recover from strenuous exercise. The feeling of fatigue was sometimes accompanied by brain fog, in which I would experience a clouded mind and short-term memory loss.

In the Spring of 2013, I was teaching outdoors, when I suddenly felt faint and extremely sensitive to sound, movement, and light. I went home after the program ended, ate lunch and took a nap. I woke up from the nap feeling violently dizzy, like something was terribly wrong, so my family took me to the ER. The Emergency Room doctors assessed my heart rate while laying, sitting, and standing, and diagnosed me with dehydration, since my heart rate raised significantly from sedentary to standing. (Essentially, the ER doctors had diagnosed me with POTS, by performing a simple tilt table test!) I was sent home, pumped full of IV fluids, but felt no improvement. It took me between 2-3 months to be able to walk and drive again after that first ‘dehydration episode,’ or as I know now, migraine.

The symptoms I was experiencing at this point were light-headedness and dizziness with any physical activity, extreme fatigue, and a constant feeling of anxiety in the absence of anxious thoughts. My doctors tested me for all sorts of conditions with no definitive results. A friend of mine recalled a similar experience before going Gluten-free, so I cut out gluten 100%. Within a few months, my GI symptoms cleared up completely, and I felt well enough to continue working and living again. Although I was getting through my day-to-day activities, I continued to feel out of sorts, like something was still wrong. Throughout 2013, I started to take note of what would significantly worsen my symptoms: hunger, dehydration, alcohol, and lack of sleep. I was seeing my doctors regularly, but all of my tests kept coming up negative. My health was slowly declining, but I kept going and trying for normalcy.

By the time April/May of 2014 came along, my world was shrinking– I went from being able to drive for hours to only 45 minutes, then 30 minutes, then 15. Driving at night was out of the question and I started having to budget my energy so that I could continue working. I was having trouble walking, as though my legs weren’t communicating with my brain or with each other. 100% of the time, I felt like I was on a turbulent airplane– this dizziness was completely unpredictable in its intensity and made it impossible to walk, especially in the dark or downhill. On May 15th, I finally reached a point at which I could no longer continue to socialize, work, or do anything. I became completely bed-ridden.

I visited the dysautonomia experts at Cleveland Clinic in Ohio in May of 2014, and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). At this point, I was in a wheelchair and could barely get dressed without having to lie down for 20 minutes from being so short of breath. My heart rate was over 150 beats per minute on the tilt table, over 100bpm resting, and over 130bpm standing still. The cardiologist there told me that I would spend the rest of my life trying to figure out what was causing my POTS with no success, and that I would miraculously get better when I turned 40 (this isn’t a joke, this is what a doctor actually told me). Until my 40th birthday, he suggested I drink loads of water, eat tons of salt, and start the Levine Protocol– an intensive exercise program designed for POTS recovery. The Levine Protocol required that I exercise while keeping my heart rate in a desired zone for a set amount of time, for example, 6 minutes between 145-165 beats/min preceded and followed by 5 minutes of cool-down. This exercise program was incredibly intense for someone who couldn’t even sit in a chair (the blood going to my dangling legs would make me faint). The Levine Protocol would make me so dizzy and tired, that it would take two days to be able to sit up again– I would lay completely flat between my prescribed exercise days. After a month of this program, I couldn’t take it anymore. I had to stop. On the plus side, the exercise had dropped my resting heart rate down to 75-85, and my sitting heart rate to about 90bpm.

In the meantime, I continued to see doctor after doctor after doctor, searching for answers. I dismissed the ridiculous notion that I would wait until I turned 40 to get better, and I wanted to know what was causing my POTS. At Penn, we visited doctors who wanted to treat me for Lyme Disease, then a doctor who diagnosed me with cerebellar atrophy and a movement disorder. A cardiologist in Maryland gave a more specific (and accurate) diagnosis of mild and atypical POTS, likely the result of a inflammatory brain condition. At the Jefferson Hospital, a neurologist suggested I may have a brain infection, and ordered a spinal tap. I consulted two infectious disease doctors: one wanted to have me tested for slow-moving fungal infections of the brain. The second ID doctor finally helped me.

Dr. Kristin Hauer asked me, what is your worst symptom? I answered that it was my dizziness. She suggested I find the cause of my debilitating dizziness, and referred me to Dr. Teixido– an ENT in Wilmington. When I met Dr. Teixido’s assistant– Dr. Scherino– I gave him the same spiel I had given every other doctor (an abbreviated version of what is written above). He tested my vestibular system by covering my eyes with infrared goggles, so that he could watch my eye movements as my head was rotated. With the goggles still covering my eyes, I heard him say, “Well, I think I know what’s wrong with you, and how to help get you back to normal.” Through all those years I had never heard a doctor say those words. He explained that I had a migraine disorder, and could get better through a simple treatment plan. The search was finally over.