A Message from Dr. Diana Driscoll, Optometrist and Clinical Director of POTS Care 

COVID-19 is an ongoing global tragedy that will affect public health for at least the next half-century, if not longer. 
We grieve for the families who have lost loved ones, those of you who have suffered from the virus itself. As part of this wonderful community, I have had the chance to speak with and comfort so many of you. The stories you’ve shared cannot be fully honored with even the sincerest offer of consolation or understanding. I will never forget them. 
Because we are a community of strong people, it is time to look ahead to what comes next. I’m talking about “Long COVID.” Is it real? Can COVID lead to POTS? Absolutely, and we are going to stop it.

What is Post-COVID POTS?

POTS stands for “Postural Orthostatic Tachycardia Syndrome.” That means, roughly, “when you stand up, your heart beats rapidly until you sit down again.”

We have been treating post-COVID POTS patients for the last two years We have also been treating post-viral POTS since our company’s inception over eight years ago. These patients truly suffer! They need to be identified, evaluated, and treated properly.

We have been treating Inflammatory POTS, including the risk of clotting and micro-clotting, vagus nerve dysfunction, and abnormal intracranial pressure. We did deeply into the inflammatory cascade, the immune system, vascular health, endocrinology, and more to determine every individual’s unique medical challenges that has caused POTS.

Many of you know that I developed POTS after a virus, as did my son. I suspected that COVID (or most any SARS virus) may be capable of causing POTS, and that is indeed, what is happening. I see that the patients diagnosed are going through a similar (frustrating) journey through diagnosis and inadequate treatment. My journey for answers involved over a decade of disability. I do not want to see this repeated in others.

POTS is so much more than a fast heart rate upon standing! Patients develop symptoms involving most every system of the body. This is a true medical problem, not a psychological illness or one of “hypervigilance”. Patients are, indeed, that sick!

We do not need to understand everything about this virus to identify and treat POTS that can result from the infection. For most patients, the virus is gone – this is not a “virus problem”. Instead, POTS is due to the abnormal response to the virus and should be treated from that angle. Otherwise, patients will not only continue to suffer, but they can also get worse as the condition morphs over time.

Viruses and Bacteria Are Known Triggers of POTS 

We know that COVID-19 is a virus that causes potentially severe upper-respiratory illness, and we know that onset of some viruses can trigger Postural Orthostatic Tachycardia Syndrome (POTS). This is not the first time that POTS has been induced by a virus or bacteria, even a respiratory illness.
In fact, 30% to 50% of POTS can be precipitated by a viral illness or severe infection.1 Because COVID is such a large-scale problem, it is getting the attention of both the general public and the medical establishment. Ironically, this is validating much of the suffering patients have endured with POTS prior to COVID.
But I see the approach to treatment is still directed at covering up symptoms and emphasizing physical rehabilitation, such as exercise and diet. There is little or no attention to the underlying medical causes of POTS – something that must change!

How Long Will Post-COVID POTS Last? 

The first reported case of post-COVID POTS occurred in March 2020,³ when a patient, several months after contracting COVID, developed symptoms including palpitations, fatigue, and shortness of breath.

Since then, POTS patients have increased in number. From my perspective, the numbers are not telling the whole story. 

Early in the pandemic, testing for COVID was not always available, skewing the number of patients identified with “Long COVID”. Even if a patient did not get a positive COVID test, post-COVID POTS cannot be ruled out. 

We Need to Know the Scope of COVID-19 First 

One case study of 20 patients found that only 30% had a positive test prior to being diagnosed with post-COVID POTS. These numbers line up with what we know about COVID testing: that there are between 6 and 24 actual cases for every positive test⁴ (this study was done in 2020, and with vaccination rates increasing, the numbers are currently likely to be lower).

Patients who are experiencing COVID-19 symptoms (or new symptoms) weeks or months after initially contracting the virus, should be evaluated for POTS. 

It is only until we know the full scope of COVID that we can put a timeline on Long COVID and POTS. Because the vast majority of clinics do not fully understand POTS and are not treating the underlying problems causing a patient to be prone to POTS, we can likely expect this problem to last longer than it should. 

References

Logue JK, Franko NM, McCulloch DJ, et al. Sequelae in Adults at 6 Months After COVID-19 Infection. JAMA Netw Open. 2021;4(2):e210830. Published 2021 Feb 1. doi:10.1001/jamanetworkopen.2021.0830

Johansson M, Ståhlberg M, Runold M, et al. Long-Haul Post–COVID-19 Symptoms Presenting as a Variant of Postural Orthostatic Tachycardia Syndrome: The Swedish Experience. J Am Coll Cardiol Case Rep. 2021;(4): 573–580 

Miglis MG, Prieto T, Shaik R, et al. A case report of postural tachycardia syndrome after COVID-19. Clin Auton Res. 2020;30(5):449-451. doi:10.1007/s10286-020-00727-9

Havers FP, Reed C, Lim T, et al. Seroprevalence of Antibodies to SARS-CoV-2 in 10 Sites in the United States. JAMA Intern Med. 2020;180(12):1576–1586. doi:10.1001/jamainternmed.2020.4130