Living with an invisible disease

I was a 26-year-old fit, healthy and active woman on my life’s adventure: getting paid to work with a family in New York. However, my life was turned upside down when I was forced to return to Australia after just 6 weeks.
I felt extremely bad and ended up spending 1 month in the hospital with a mysterious illness on my return.

I was unable to get up or walk, and I had persistent dizziness, nausea, severe brain fog, chronic fatigue, migraine, and fainting.

Doctors ordered a “tilt table” test, during which they tied me to a bed and tilted me at various angles while machines monitored my blood pressure and oxygen levels, among other things.

I finally passed out. My body was paralyzed and my brain seemed to be telling my body to respond to the doctor’s instructions. But she was not responding. I started to pray.

Five other doctors and nurses rushed in and assured me that everything would be fine.

Soon after, however, they diagnosed postural orthostatic tachycardia syndrome (PoTS). I was one of the lucky ones to receive a diagnosis, as PoTS may go undiagnosed for many years.

PoTS is a condition that affects the autonomic nervous system, where there is a lack of communication between the parasympathetic and sympathetic nervous systems. These systems form the vagus nerve, which is the main nerve from the brain to the rest of the body.

Essentially, it prevents the body from regulating the “fight or flight” and “rest and digest” functions, which can sometimes lead to a lack of blood flow to the heart or brain.

Impact on my life
My life completely changed. I went from being an independent, fit and active person to feeling like a truck had hit me every day. Tachycardia (a very high heart rate), dizziness, migraine, and nausea were constant, and standing up felt like something completely new to my body and brain.

The first days of this condition were the most difficult, and accepting it was the true test.

But I had to accept that my body was not capable of doing the things it could before. I had to mentally reprogram my brain to understand that and learn how to take it every day.

Most PoTS studies suggest that changes in lifestyle and time may help improve the condition, but there is no known cure. My daily life would consist of moving (if I could) from the bed to the sofa and vice versa, while dealing with tachycardia, nausea, dizziness, migraine, hot flashes, presyncope and brain fog in various combinations.

I was [taking] medications to lower my heart rate, tablets for nausea, tablets for dizziness, and medications for automobile disease, all in an attempt to reduce my symptoms. This could not be, I thought to myself. There had to be an alternative.

I started investigating the condition, learned my triggers, understood more about my body, and tried to help myself through daily symptoms in any way I could.

I had a mission that I needed to complete and goals that I wanted to achieve, and I wasn’t going to let anything stop me.

I researched autoimmune nutrition protocols and switched to a paleo diet, and then a plant-based diet. I cut the sugar, starch and wheat and switched to an organic, alkaline regimen, which was a big change for me.

I started undergoing regular acupuncture to increase oxygen and blood flow, which would also reduce my migraine, nausea, and dizziness. I also started practicing Iyengar recovery yoga, conditioning my muscles and allowing my body to relearn how to be upright again without passing out.

I also had to learn to get out of my comfort zone, knowing that only then could I begin to progress.

Simple tasks like walking to the end of my driveway to pick up the mail turned into small victories, and when I started to venture slowly, I realized that I had developed anxiety about having an episode in public, which would further trigger my symptoms.

This anxiety seemed to mimic my PoTS symptoms, and vice versa, so getting professional help to differentiate and resolve them was a huge step forward for me.

I started to focus on the fact that everything would be fine regardless of the worst case scenario.

Also, I found that being prepared for an episode helped me start setting goals and getting some normalcy back in some parts of my life. For example, I started carrying food and electrolytes with me, using a heart rate monitor, taking ginger chews and tablets for nausea, and making sure not to push myself too hard.

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