I’m just girl – Diagnosing part 3 (Postural Orthostatic Tachycardia Syndrome)

I just assumed that every person became light headed when they stood for an extended period of time. Standing up quickly or being overly active would always leave me with a spinning room and short light show. It was something I naturally compensated for through the years. I figured that everyone lived with these daily sensations. After all, the human body is a weird machine. 

No one in my family has much trust in modern medicine. From religious reasons to superstitious avoidance and general unease with the practice, I wasn’t brought up with doctor visits. The occasional trip for stiches or antibiotics did happen, but we never went back for follow-ups or took the entire course of medicine. With that foundation, I didn’t believe that my body had any deficits. Everything was just different levels of normal. Of course, I found out that perception was completely naive and even dangerous. 

In my late teens, I had a high-energy job that required me to be on my feet for 8+ hours a day 6 days a week. As time went on, I noticed that my dizzy spells were worsening and the techniques I used to settle them were no longer working. Grabbing a quick seat, stretching with a walk, or taking a meal break couldn’t stop my fuzzy thoughts or tunnel vision. Eventually, I fainted. Twice. The first time, I thought that I was sick so I went home and rested. The next time, work sent me to the emergency room. The doctor took one look at visibly perfect me and dismissed both episodes as dehydration. One bag of saline later and I was cleared to go. 

I began a heavy hydration routine. It did help, for a while. But the wooziness came back time after time. I learned to manage it by sitting, leaning, and laying my way around the episodes. Then, in my mid-twenties, my heart started giving me trouble. Research suggested it was anxiety or panic. But I didn’t feel anxious. It was always worse when I was doing cardiovascular activities and at night. It got so bad that I was actually scared. Sometimes it felt like I was having a heart attack. Other times it would leave me short of breath or dizzy. I went to a doctor. Without doing any tests, he said it was panic attacks. I knew it wasn’t wasn’t. I didn’t have any anxiety. I left the office feeling frustrated and chose not to take the drug he prescribed. This was my first chance to be my own medical advocate. It wasn’t a perfect example of standing your ground but it was a start. 

The feeling continued so I scheduled another appointment with the doctor. This time he listened to my heart and took my blood pressure. My bp was low, he said that was good. But I wouldn’t stop hounding him about how I was feeling. He ordered a small wearable device that monitors a heart rate for two weeks. I wore it around for my normal activities. It would beep on occasion and I figured that it was going to give me answers to my heart problems. It did not. The doctor told me that I had some elevated heart rates and palpitations but that they weren’t unusual. His professional advice, “avoid unnecessary stress and don’t worry about it”. This doctor was telling me that my physical symptoms were purely psychological manifestations. 

I felt like an idiot. Nothing was really wrong. I was being a drama queen. So, I just lived with the uncomfortable symptoms. I told myself that I was just being weak and pushed myself harder. Too hard.

Two years later, I landed in the hospital. I had gone in for my routine gastroparesis related colonoscopy/endoscopy. They wheeled me into the procedure room and hooked me up to all the monitors. Minutes later, they declared me unfit to proceed and took me to the Emergency department. The doctors said that my heart rate was too elevated to do the test and it wasn’t safe for me to go home. After 4 hours in the E.D., I was admitted and sent to a room. 

My resting heart rate was averaging 130 bpm. My resting blood pressure was averaging 65/95. Any movement, stress, or even just randomly, those numbers would jump: 210 bpm and 60/80 bp. It was such a precarious situation that I wasn’t allowed to go to the bathroom, bathe, sit upright, or do anything. At one point, my rates moved so spectacularly that a code was called and I was treated to certain heart saving protocols. 

12 days into being a living curiosity for these doctors, they finally diagnosed me with Postural Orthostatic Tachycardia Syndrome. The test that actually identified the condition was wild. It included standing against a revolving table. You get strapped onto it and it tips in different directions. Small pads are stuck to your body to measure sweating, heart rate, and blood pressure. Fainting during the test is a good possibility but they prepare for that. Eventually, they found a good combination of medications that kept my heart rate down and my blood pressure up. I began doing physical therapy and was cleared to leave 2 days later. I was lying in that room for 14 days total. My muscles began to atrophy and I lost 15 pounds. I felt a strange mix of crazy (reference the hospital PTSD story), exhilaration, and scared leaving. But at least I had a solid diagnosis. I wasn’t just making it up.

After some time passed, I researched POTS. As it turns out, young women are the most affected population. Their symptoms are often misdiagnosed because of gender bias. Exhaustion, dizziness and fainting are commonly treated as eating or emotional disorders. Many other symptoms are explained away as anxiety, depression, hormones, hypersensitivities, and the need for attention. All of this is sad. None of it is surprising.  While testing for POTS is not widely available, there are simple pharmaceutical and accessorial treatments that can be tried if your doctor suspects the syndrome. Small changes in diet and exercise can also help.   

As I’ve repeated time and time again, trust your gut. Understand the psychological component of physical symptoms but don’t discount how well you know your own body. If something doesn’t feel right, insist on a second or third opinion. Many of us with broken bodies go through a decade or more of misdiagnoses and unhelpful medical advice. Even with great doctors, some conditions are just not yet labeled as real disorders. Finding relief from your symptoms is not a luxury. It’s a necessity. 


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