Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that gives you some insight into what POTS is and how it can affect you or the people around you.

POTS or Postural Orthostatic Tachycardia Syndrome has been in the news a lot lately, with many people who had Covid and then developed long Covid being diagnosed with POTS. With more and more cases appearing and being diagnosed, the media has been focusing more on it and, in turn, bringing more awareness to it.

POTS falls under the umbrella of dysautonomia diseases, which also include Orthostatic Intolerance, Multiple System Atrophy, and many more. I can only speak to POTS, but I’m sure the rest are easily searchable on Google. POTS can be genetic or brought on by the virus or other illnesses; a lot of recent cases have been associated with Covid. For me, it was pneumonia.

Please note that while I referred to it as a disease it is really a syndrome of autonomic dysfunction resulting in a series of symptoms.

So actually what is it?

The way it was explained to me is that the valves in your legs are broken and they don’t realize when they need to close. Which means they stay open when you are lying down, sitting, or standing. So when you stand up normally (without POTS), the valves in your legs close, forcing the blood to go up to the rest of your body. With POTS, the blood stays at your feet, causing, in some cases, pooling of the blood. Because the blood stays at your feet when you stand, your blood pressure drops, and because your blood pressure drops, your heart beats faster to try to make up for it.

This sudden drop in blood pressure and sudden elevated heart rate when changing positions is the hallmark of POTS. Normally, the heart rate jumps by 40 beats per minute when going from sitting to standing and can be much more when going from lying down to standing. At this point in time, POTS does not seem to have an impact on a person’s life expectancy.

Symptoms of POTS

POTS is different in everyone and often different in the same person day-to-day. Some of these symptoms someone might have one day and might not have the next. Some can be long-term, and others are short.

*The ones with links are one I have experience with, the rest are for your knowledge. 

How to get a Diagnosis

It can take years for people to get a formal POTS diagnosis. On average it takes 4 years according to the Mayo Clinic. To get the diagnosis you must show symptoms for 6 months and you need to show autonomic dysfunction on standing. This can be tested 1 of 2 ways. The first option is a 10 minute standing test. They will have you lay down for around 5 minutes, then stand up for 5 minutes all while hooked to the monitors to track your blood pressure and heart rate. The tilt table test is less common, you will be strapped to a table and “tilted” around. You start on the table laying down and then it raises upward to almost fully standing.

Click here to find out more on how to get a diagnosis.

Common Comorbidities

• MCAS
• Autoimmune diseases
• Fibromyalgia
• Anemia
• Migraines
• Hypermobility / Ehlers-Danlos syndrome
• Chronic Fatigue Syndrome
• IBS
• Celiac disease
• Gastroparesis

Feeling Overwhelmed? Don’t know what to read next? Start here:

Getting a Diagnosis

Symptoms

School and Work

Top 10 Tips

Resources / Further Reading

“Autonomic Specialist Interviews – History of POTS with Phillip Low, MD.” The Dysautonomia Project, https://thedysautonomiaproject.org/history-of-pots-with-phillip-low-md/. Accessed 17 March 2023.

“Dysautonomia Awareness Month! – Just Keep Stimming!” Just Keep Stimming!, 2 October 2017, https://justkeepstimming.com/2017/10/02/dysautonomia-awareness-month/. Accessed 17 March 2023.

“Impact of comorbidities on the prognosis of POTS | IJGM.” Dove Medical Press, 27 November 2021, https://www.dovepress.com/impact-of-comorbidities-on-the-prognosis-of-pediatric-postural-tachyca-peer-reviewed-fulltext-article-IJGM. Accessed 17 March 2023.

“Postural Orthostatic Tachycardia Syndrome.” Dysautonomia International, http://www.dysautonomiainternational.org/page.php?ID=30. Accessed 17 March 2023.“Postural Orthostatic Tachycardia Syndrome (POTS).” Johns Hopkins Medicine, https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots. Accessed 17 March 2023.