It is amazing how vividly I remember the first day. The day I realized that something was wrong and first convinced myself that it wasn’t.
It will be three years this February 13th. I was visiting the Wizarding World of Harry Potter at Universal Studios Hollywood for the first time. As a huge Harry Potter fan this was just about the best day of my life, there may or may not have been tears. I remember the park being a bit warmer and more crowded than one would expect on a technically winter weekday, but I was determined to push through. Lines were extra-long for the Forbidden Journey ride, but I made the best of it by looking at all of the amazing props set up through the queue. After an hour we were nearing the front when something suddenly was not right. Like a wave, I was hit with nausea and an unsettling feeling of weakness. It felt almost like an out of body experience as my vision started to tunnel and I grew dizzy and confused. Trying to ask for help I found I was barely able to string words together. In an attempt to take matters into my own hands I attempted to remove the rope and get out of line only to find my motor skills gone. I was trembling and scared. Instinctually my husband knew something was wrong and rushed me out of the line to a cool bench. Thinking it was heat exhaustion he got me water and let me relax. Eventually, I found my bearings and explained I felt like I was going to throw up or pass out. We attempted to enjoy the rest of the day the best we could while taking breaks and ample amounts of water, but it seemed whatever had happened had left me weak. We eventually left that park and I tried to put what happened out of my mind. Truth be told it scared me and I was simply not able to deal with what it could mean.
I am ashamed to say that over the next two years I chose to ignore these symptoms and episodes. I equated any dizzy spell to exercise, lack of sleep, asthma conditions or even pretended they didn’t happen. But as time went on the frequency and severity began to increase. I noticed I have two types of episodes. The more severe ones being like the day at Universal Studios and minor ones being similar but with me able to retain verbal and motor skills. What had started as a major spell ever few months and minor ones every few weeks became major spells monthly and even weekly with minor ones occurring nearly daily. The worst part is that there didn’t seem to be a specific trigger or cause. I found myself having to cancel plans or avoid doing things I loved due to the fear a spell would hit. Eventually, I could not ignore the truth anymore and I made an appointment with my doctor. A quick test confirmed the presence of Orthostatic Hypotension (blood pressure drops from sitting to standing) but the question was why.
After two years of ignoring my body, I started down the road of discovery. Early testing showed the presence of Neurocardiogenic Syncope and treatment-resistant Anemia. Neurocardiogenic syncope is basically a fainting disorder due to some aspect of communication between the brain and the heart. What this means is that instead of my body regulating my blood pressure, certain triggers will cause my blood pressure to drop instead resulting in fainting or near fainting episodes. The problem with this diagnosis is identifying a cause. Research in this area is new meaning that approximately a third of patents will not find any underlying reason. Those who do find a cause could have issues relating to any number of areas including the brain and heart. To complicate matters I have treatment-resistant anemia which basically means I’m anemic and Iron from supplements and food are not being absorbed. Anemia can cause a bunch of issues to an individual especially when it goes untreated. Although most of the doctors on my team don’t think the two related a connection has not been completely ruled out.
It has been a year of testing and still, the answers elude us. Originally, I had intended on waiting until I had clear answers before writing about this but this is a story that needs to be told. So welcome to this journey.