Relief in the Diagnosis
As I’ve mentioned in My Story with POTS, I’ve been dealing with symptoms of POTS (Postural Orthostatic Tachycardia Syndrome) for over 10 years. For most of that time, doctors didn’t know what was going on with my body and didn’t have a name for what was happening to me. Eventually they called it Vasovagal Syncope, which essentially means that I faint and have fainting spells. I wanted more answers.
The first time I heard the term POTS was when a friend of mine was talking about how worried he was for his friend who had this strange condition. When he described some of her symptoms, I remember thinking, well this sounds familiar. Could I have this too?
That night, I looked up what POTS was and through my research, I found Dysautonomia International’s website (a great resource for POTS patients and for others who wish to learn more). As I was reading about the condition, I became convinced that it might be what I have. It was at least worth looking into I thought. I figured out how to get tested for it and set up an appointment.
I had autonomic testing done the Spring of 2017 which involved the Tilt Table Test to monitor what your heart rate and blood pressure do when brought to a standing position and a QSART test to measure sweating and skin temperature. As I was brought from a supine position to standing, my heart rate began to jump and shortly thereafter my blood pressure began to plummet. Within about 2 minutes, I started to pass out. An abnormal increase in heart rate of 30bpm or more or a heart rate of over 120bpm within the first 10 minutes of standing is currently the diagnostic criteria for POTS.
I hit the criteria needed and was diagnosed with autonomic dysfunction (also known as Dysautonomia), and POTS. POTS is a form of Dysautonomia, which means the autonomic nervous system doesn’t work as it should. The autonomic nervous system controls all the “automatic functions” you don’t think about like breathing, heart rate, blood pressure, body temperature regulation, digestion, sweating, etc. When you have a malfunction in this system, it creates all sorts of problems and symptoms, many of which I deal with daily.
It was a huge relief to finally have a name for all the weird symptoms I had been dealing with for years! At times throughout the process of getting to a diagnosis, people including doctors would chalk it up to stress, anxiety, female issues, or that it was all in my head. POTS is not caused by anxiety and you can read about it here. More on that in a later post.
Getting my POTS diagnosis and now knowing what I was working with was very freeing. It felt so good to be validated after years of feeling questioned and misunderstood.
If you think you might have Dysautonomia or POTS and want to look into autonomic testing, search for doctors that offer autonomic testing in your area or please feel free to reach out to me if you have any questions or need help finding a doctor near you!