fbpx

Long Covid & POTS: What It Is & How to Treat It

A Message from Dr. Diana Driscoll, 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.

woman with purple mask for long covid

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

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 Do I Know If I Have POTS? 

Over 30% of COVID patients have continued to suffer symptoms for months after contracting the virus.2 I predict that in a few years, it will be recognized that patients are continuing to suffer for years!

POTS is a form of dysautonomia, a dysfunction of the autonomic nervous system – the system of the body that works automatically – you should not need to “make it work”.

The autonomic nervous system regulates body processes like heart rate, body temperature, digestion, and blood pressure, so issues with this system can be debilitating.

Symptoms of POTS may include all of the following: 

  • Dizziness 
  • Lightheadedness
  • Brain fog
  • Heart palpitations
  • Shortness of breath
  • Rapid heart rate when standing
  • Moderate or severe fatigue 
  • Flushing

We also see many cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a potentially disabling fatigue syndrome that often comes with POTS.  

It is important to understand that although POTS involves a fast heart rate upon standing and includes the symptoms listed above, the syndrome reaches far beyond this presentation. Patients can develop as many as 100 symptoms, and they can affect any system of the body. Reducing this illness to “orthostatic tachycardia” diminishes its disabling potential and the suffering that can occur.

If you experience more than three of the symptoms above at the same time, you may have POTS. When you’re ready, we’re here to help treat you. 

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. 

At POTS Care, We Are Experienced in POTS Treatment

Although I am glad to see the attention drawn to post-COVID POTS, including the start of many new clinics, I am concerned that the emphasis on covering up symptoms will cause ongoing suffering in those affected. I fear that as symptoms multiply, patients will eventually be viewed as psychiatric patients. Instead of locating and treating the true underlying problems, the focus may shift toward blaming the patient for their illness – a grievous mistake. 

Most cases of POTS are complex, and I have not found two that are exactly the same. In those affected, one problem leads to another, which leads to another, and so on, until the patient presentation is extraordinarily complicated. The earlier the patient is diagnosed and evaluated, the easier it is to tease these layers apart. It is important to get diagnosed as soon as possible.

If you believe you have POTS, please contact my team at POTS Care as soon as possible to see if you qualify. We are here to help you and consider it an honor to do so!

 — Dr. Diana Driscoll, Clinical Director, POTS Care, PLLC

Member, Long COVID Alliance

Options for Treatment:

REFERENCES

  1. 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
  2. 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 
  3. 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
  4. 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 

Come see the experts

Call us today to speak with our Patient Care Coordinator

1-866-DIZZY-05

(1-866-349-9905)