WTF is POTS?!?

So I keep using this term POTS right? No, I am not talking about the items in your kitchen….POTS stands for postural orthostatic tachycardia syndrome. It is a form of dysautonomia. Dysautonomia is a problem within your nervous system that controls the involuntary parts of your body to improperly function such as your heart rate or blood pressure. POTS is associated with increased heart rate (tachycardia) and several other symptoms when standing. To be diagnosed with POTS the basic gold standard test is a tilt table test. During the tilt table test the criteria is for your heart rate to increase over at least 30 beats per minute (for children 18 and younger 40 beats per minute), exceeding over 120 beats per minute, during the first 10 minutes of standing, without a significant drop in blood pressure. Doctors may also use other tests to come to a full POTS diagnosis such as gastric motility, skin biopsies, sweat tests, and reflex tests.

The start of my story begins as I am getting discharged from the Emergency department where I was told to get worked up for POTS. If I am being entirely honest with you, I had no clue where to start. I NEVER learned about this in nursing school?!? So like I said before I googled it…Here are some example of symptoms of POTS that people can experience:

Chest pain, anxiety, headaches, fatigue, brain fog, GI problems, shakiness, palpitations, dizziness, and blurry vision….well if I wanted to check off my boxes I could check off every. single. symptom on this list! I was shocked. My next step (with the help of my fellow nurses and friends) was reaching out to my neurologist and finding a cardiologist to get this much needed diagnosis. I first was wanting to find a cardiologist, but was told the wait at my current network could be up to 6 months ( yeah no thank you), so I decided to go outside of my usual network of doctors. This cardiologist visit left me pretty frustrated with NO answers except for the usual you are “normal”. I was a bit pushy for more so the last resort of I had not tried was a holter monitor. For those of you that do not know a holter monitor is a heart monitor that you wear for a specific amount of days and it records your heart rhythm 24/7. You can record symptoms and send them into the system but the monitor will also record when/if you are having any abnormal rhythms. I am still waiting on these results…..Since the cardiologist was a bust, I kept positive that the tilt table test would be where I would find all my answers.

Out of the hundreds of tests that I have done and seen the tilt table test was definitely an experience. My results were considered “excessive” due that my heart rate was 60 when lying down relaxed, and when standing it increased to 123 for the full 10 minutes. Not only did my heart rate double, but I also felt dizzy, nauseated, had a severe headache, and felt like I was going to faint. You can say that might have been the only test I have ever failed! The next day I was given the diagnosis of POTS. I honestly had a huge amount of relief that I finally got some answers and that my symptoms are now being believed, but I was also overwhelmed with emotion. This diagnosis is not curable or an easy fix. It is so new that my prognosis is unknown, but I am determined to focus on the positives and take this on day by day! Stay tuned for my continued journey and tips/tricks on helping manage POTS!

“You were given this life because you are strong enough to live it.” — Unknown

ID=30http://www.dysautonomiainternational.org/page.php?ID=30

2 thoughts on “WTF is POTS?!?

  1. I love you my beautiful niece! Tell me if there is anything I can do to help. We are so sorry you are going through this. Please take care of yourself. We hope there is something they can do for you to help you. Lots of hugs and love. Aunt Jacque

    Like

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