Hi, I’m Grace and I am living with the chronic illness Dysautonomia. What is Dysautonomia? It is an umbrella term used to describe a number of diagnoses that are caused by dysfunction of the autonomic nervous system. I live with Dysautonomia in the form of Postural Orthostatic Tachycardia Syndrome also known as P.O.T.S. So how does P.O.T.S. affect someone? Well it does exactly what its name says. People with P.O.T.S. experience changes in orthostatic (blood pressure) and tachycardia (heart rate) with postural/positional changes. Typically potsies (someone who has P.O.T.S.) have a drop in blood pressure and an increase in heart rate when going from a lower position such as sitting to a higher such as standing. So what are symptoms? Symptoms not only include high heart rate and low blood pressure but can also include dizziness, lightheadedness, fainting, blood pooling, digestive problems, brain fog, inability to exercise and fatigue. In my personal experience I struggle the most with dizziness, fatigue and stomach/digestive issues.
So more about my personal experience, my journey with P.O.T.S. began about 6 years ago at the age of 12. I began experiencing extreme abdominal pain, which led to many ER trips, doctors appointments and several wrong diagnoses. Like many with Dysautonomia I was told by some doctors what I was feeling was all in my head or that I was just stressed. Over the next 4 ½ years I went to numerous doctors and went through the full run of testing including MRIs, CTs, ultrasounds and even swallowing a camera. Almost all of them came back normal. While mainly ineffective, the tests led to a few diagnoses the main being gastroparesis. However the main question of why I felt so sick remained unanswered. In the fourth year I also started experiencing episodes of lightheadedness and even fainted after a school dance; the reason for these was unsolved. Eventually in February of 2017 I developed a viral infection which brought along the symptoms of dizziness with sitting and standing, increased heart rate, and fatigue. Although the reason is still unknown many who develop P.O.T.S. start to experience symptoms after an infection. Some young girls also might see symptoms once their cycle starts, as hormones are believed to be a big contributing cause; this also helps explain why 80% of P.O.T.S. patients are female. So about a month into my symptoms my doctor suggested I see a cardiologist and look into P.O.T.S. and after 4 ½ years of searching I was diagnosed in 15 minutes. Sadly my case isn’t rare. The average diagnosis time from first sign of symptoms to getting the diagnosis is 5 years.
Now with a diagnosis I began treatment. So treatment of P.O.T.S. is tricky because like snowflakes each person and case of P.O.T.S. is completely unique in its own way. So what does the treatment process look like for me? For me personally I am still trying to find what works best for me and my body through a combination of modern medicine and natural treatments. Some things that I found that have helped are increasing my daily salt and water intake, saline infusions multiple times per week, and exercise.
With my treatment plan in place and the help of a mobility aid I was still able accomplish many things. With lots of salt and determination I was able to graduate high school on time with my class, and after a gap year I still plan to go to college. Although I have P.O.T.S. I don’t let it define me and what I can do.