COVID-19 Infections

If you either developed POTS and/or MCAS post-COVID, think you may have POTS post-COVID, have been diagnosed with POTS, ME/CFS, or MCAS post-COVID, have POTS and are concerned about COVID-19, or are trying to learn more about the relationship between POTS, ME/CFS, MCAS, EDS, and COVID-19 infections, you have come to the right place. We wish this wasn’t a necessary topic and that we could say there is no relationship, but there is significant evidence that points to the contrary. We hope that answering these questions is helpful! We will continue to update this page as more questions are answered, more research is released, and as we continue to immerse ourselves in the literature specific to COVID-19 and how the virus impacts our community.

Applicable Questions and Answers Listed Below:

Can COVID-19 infections cause POTS?

Unfortunately, growing evidence, which we will share within this page, has continued to demonstrate that COVID-19 infections can trigger the development of POTS, in addition to other illnesses such as MCAS and ME/CFS (others as well, as this is not an all-inclusive list). Though we often refer to these illnesses as “Long COVID,” or “post-acute sequelae COVID-19” (PASC), Long COVID is an umbrella term that can refer to many different illnesses that may develop after a COVID-19 infection (Morrow et al., 2021). Providers specializing in this area, such as Dr. Tae Chung at Johns Hopkins and Dr. Brent Goodman at Mayo Clinic, have indicated “an increase in the number of patients referred to autonomic specialty clinics, and this is likely to increase as the full impacts of COVID-19 are realized. In order to properly care for these patients, more clinical resources will be needed. This will require increased infrastructure to improve throughput in the current secondary and tertiary care referral clinics, including staff and testing capacity. In order to effectively handle this expected increased patient load, providers may have to start caring for these patients outside of the referral centers” (Raj et al., 2021).

Can other infections trigger the development of POTS too?

Yes, unfortunately, viral and bacterial infections were and continue to be the most common POTS triggers. Although the number of cases have not previously been seen on such a large scale in a short period of time (as we are seeing now) given that those infections were not specific to a global pandemic, providers have been seeing cases of POTS after Epstein-Barr, Influenza, and Borrelia burgdorferi infections, just to name a few (Blitshteyn et al., 2021; Thieben et al., 2007; Noyes et al., 2014; Fedorowski, 2019). To learn more about other potential triggers and causes, see our What Causes POTS section.

I was diagnosed with POTS after a COVID-19 infection and feel overwhelmed. Where do I start?

We understand how overwhelming and scary it can be to first navigate a COVID-19 infection, then begin developing very new and at times frightening symptoms, then to be told you have POTS. Often, there can be delays in diagnoses and/or providers may not have the tools to help you in the ways that you need and deserve. We recommend starting with our Newly Diagnosed section which reviews thirty different questions and answers that may be beneficial, all of which are aimed to be supportive and serve as guides for you. We ideally want you to feel like you have a supportive community here, walking through this journey with you, right by your side.

How common is POTS post-COVID?

Although the exact numbers are not known, researchers have estimated that around 20% of those infected with COVID-19 are developing symptoms that last five weeks or longer, with around 10% experiencing symptoms for at least 12 weeks or longer, as Long COVID (Carmona-Torre et al., 2022). One recent study suggests the incidence is higher, with 1 in 8 developing Long COVID post-infection (Ballering et al., 2022). It is estimated that around 67% of Americans alone with Long COVID have a form of dysautonomia, the most common PASC dysautonomia diagnosis being POTS (Larsen et al., 2022). Even if we estimate that a little more than half of the 67% with dysautonomia following COVID-19 infections are developing POTS, that would mean that perhaps 35% of those with Long COVID are developing POTS (and it is likely much higher than this). When looking at the data that is available, with over 146 million estimated total COVID-19 cases in the US as of October 2022, if we assume from the data that 10% of those infected will develop Long COVID, and 30% of that 10% pool of individuals with Long COVID will develop POTS, that still equates to over 5 million people in the US alone (“Centers for Disease,” n.d.). Some reports also suggest that 2-14% of those who have had COVID-19 infections are developing POTS in the US alone, which supports our estimates as being quite conservative (Ormiston et al., 2022). Even just as an estimate, which is not precise by any means, especially because the incidence can vary, this is very concerning!

Who is being impacted by POTS post-COVID?

We are seeing cases develop (just within our community alone) in previously healthy individuals, those who had mild orthostatic or autonomic symptoms, and those with a prior autoimmune disease, with a larger incidence seen among those who had a female gender assigned at birth. Often these are also following mild infections as well, so to us, there is no such thing as a “mild” case of COVID-19 given what our community is experiencing after these infections (all anecdotal). This must be taken extremely seriously by all, given the significant symptoms that can be experienced and how difficult it can be to navigate these illnesses, especially without proper support. Researchers are noticing similar patterns, as they are finding that the severity of COVID-19 infections is not indicative of the degree of potential autonomic dysfunction that may develop (Larsen et al., 2022). Researchers have suggested there may be an autoimmune component involved in explaining some of the POTS pathophysiology, and also believe it may be possible (though no definitive conclusions can be drawn), that those with a history of mild autonomic symptoms or a history of concussions (a known POTS trigger), could be at a higher risk for developing POTS after COVID-19 infections (Blitshteyn et al., 2021). Since researchers do believe there is an autoimmune component, and those with assigned female genders at birth are known to be at a higher risk for developing autoimmune diseases, this would explain why we continue to see this pattern within our community and within the POTS community as a whole.

Can I still develop POTS after COVID-19 infections if I am fully vaccinated?

Yes. Although vaccinations have been shown to reduce the risk of morbidity and mortality for those who can safely receive them, individuals can still be infected, spread the virus to others, and develop Long COVID (an umbrella term that includes illnesses such as POTS). Though the risk of developing Long COVID (and therefore POTS after COVID-19 infections) is thankfully reduced if you are fully vaccinated, a study that included over 13 million people demonstrated that vaccination reduced the Long COVID risk by about 15% (Al-Aly et al., 2022; Reardon, 2022). This is very concerning given how many are no longer taking protective measures, like wearing high quality masks such as N95s, to reduce exposure, believing that the vaccines offer them full protection against COVID-19, Long COVID, and any potential complications. This is why, as an organization, we do still recommend high quality masks (unless medically exempt), in addition to getting vaccinated when able, until vaccines and therapeutics are developed that can protect us against infection, morbidity, mortality, and Long COVID. We do hope that more individuals take precautions to reduce their exposure to the virus, as best as they can.

I had a COVID-19 infection and have been experiencing a lot of weird symptoms now a few months later. Someone told me I have POTS, do I have POTS?

It is certainly possible, but in order to be diagnosed with POTS, other potential underlying causes do need to be ruled out by your medical team. Our What is POTS section reviews the diagnostic criteria, which may be helpful for your providers to see. We also developed a helpful handout that you can bring to appointments with you for providers who may be unfamiliar with POTS, that you can access within this section as well. Your providers may also consider screening you for other conditions they are seeing more often in those with Long COVID, such as ME/CFS, EDS, and MCAS. More about these co-occurring conditions can be learned in our Co-occurring Conditions section.

I was told I have POTS post-COVID but now I can’t see a POTS specialist for almost 2 years. What can my medical team do? I feel so lost.

Given the sheer volume of individuals developing POTS post-COVID, and the shortage of autonomic specialists, many experience significant wait times, which can make things much more difficult. We understand how frustrating, upsetting, and scary this can feel as you are trying to get answers as soon as possible to help you access more symptom relief and daily functioning. We have many resources on our site that your primary care providers may be able to use to help you while you wait to see specialists; sections we recommend specifically for this include our Managing Symptoms. section and What is POTS. section (which talks about diagnostic criteria and how your primary care provider may be able to help you). We also recommend looking at our Newly Diagnosed. section for added support and guidance, which we hope is beneficial. Our team is here if you have any questions too. Please don’t hesitate to reach out to us by either using the Contact Us. link or by sending us a message on Instagram. You deserve the added support and access to resources that can help you as quickly as possible.

If I have POTS post-COVID can it get worse if I am infected again?

Although we can’t definitively say yes, a recent study that included individuals from 3 to 79 years of age found that 80% of those who still had Long COVID symptoms when reinfected had worsening symptoms, and 10% felt their symptoms improved (“How do Covid…,” 2022). For those individuals who were in remission and had more reprieve from symptoms, 60% experienced worsening Long COVID symptoms when reinfected (“How do Covid…,” 2022). Unfortunately, this really means that individuals with Long COVID should be especially careful to reduce their risk of exposure, which is difficult when so many are no longer taking most COVID-19 precautions. It may be important to talk to your medical team about various ways in which you can reduce your exposure, while also developing a plan of action in case you are infected again. We hope that in the next few years, better vaccines and therapeutics will help reduce the overall risk for everyone, including those in our community who developed POTS after COVID-19 infections.

How can I better manage my POTS symptoms?

Learning how we can manage our symptoms to give us more relief is essential. We put together a list of non-pharmacological and pharmacological methods (based on current research and a recent POTS conference), which you can share with your medical team and use as a guide! They can be accessed here.

A provider told me that I also have MCAS now. Is there a link between COVID-19 infections and the development of MCAS too?

Yes, there appears to be a link between COVID-19 infections and the development of MCAS, at least in part (Weinstock et al., 2021; Kritas et al., 2020; Theoharides & Conti, 2020; Theoharides, 2021). These researchers believe that the acute inflammatory response and lingering inflammation seen in PASC are partially mediated by mast cell activation (MCA) (Weinstock et al., 2021; Kritas et al., 2020; Theoharides & Conti, 2020; Theoharides, 2021). Other researchers discovered that MCA syndromes “were significantly increased” in individuals with Long COVID and believe that “aberrant mast cells may in part underlie the pathophysiology of Long COVID” (Afrin et al., 2020). “Inflammation caused by COVID-19 is complicated, and other immune disturbances that have been seen in the acute infection such as excess dysfunction of the macrophage and serotonin release from platelets might or might not play roles in Long COVID” (Weinstock et al., 2021; Koupenova & Freedman, 2020; Maxwell et al., 2021; Perricone et al., 2020).

Is it possible that MCAS, which I developed after a COVID-19 infection, is contributing towards my POTS?

Yes, although it is not as well understood as we would like (yet), it is certainly possible. Our mast cells and neurons “express an array of receptors to detect injured tissue, inflammation, microbes, and toxins” (Maitland, 2022). They communicate and are closely connected. Because mast cells and the nervous system can be viewed as a “unified defense system", where mast cells “cluster near the somatosensory nervous system to detect danger, and nerves and mast cells share some of the same danger signals (PAMPs and DAMPs),” it is not surprising that there may be a very close relationship between the two (Maitland, 2022). It is believed that neuro-immune communication can contribute towards “vasodilation (due to CGRP, histamine, and serotonin) and effector cell recruitment (with the involvement of substance P and cytokines)” (Maitland, 2022). Mast cell preformed granule mediators and lipid mediators contribute towards cellular chemotaxis, communication and interactions with nerves, and vasodilation; examples of some of the preformed granule mediators include histamine and protease, while some examples of the lipid mediators include leukotrienes and prostaglandins (Monaco et al., 2022; Dvorak et al., 1992; Douaiher et al., 2014; Hamilton, 2018). So what does this mean? If some of the symptoms experienced by individuals in our community are related to the release of mast cell mediators, it would make sense that treatments that target mast cells could help reduce those symptoms either caused or exacerbated by MCAS. This means that for some in our community, it is possible that proper MCAS treatment may improve POTS symptoms, if the underlying cause of vasodilation and nervous system dysfunction seen is related to mast cell activation.

What medications have providers used for MCAS to help individuals post-COVID?

Although it can vary, some of the more common medications used for MCAS post-COVID include antihistamines (both H1 blockers such as Zyrtec, Claritin, and Benadryl and H2 blockers such as Famotidine), Cromolyn (a mast cell stabilizer), Montelukast (a leukotriene inhibitor), Quercetin, and Lutein; benefits have also been seen with the use of low dose naltrexone, Vitamin C, and Vitamin D (Weinstock et al., 2021; Pinheiro et al., 2021; Barré et al., 2020; Choubey et al., 2020; Colunga Biancatelli et al., 2020; Freedberg et al., 2020; Hogan et al., 2020; Patterson et al., 2021; Theoharides et al., 2020; Weng et al., 2015). What is interesting is that these researchers have also noticed an improvement in individuals with Long COVID when on some of these medications, suggesting an undeniable link between MCA, inflammation, and pathology associated with COVID-19 infections, and Long COVID. We recommend discussing these medication options, and those not listed, with your medical team if you are diagnosed with MCAS and seeking potential treatment options.

Is there a link between ME/CFS and Long COVID?

There do appear to be many striking similarities between ME/CFS and what many with Long COVID are experiencing (Wong & Weitzer, 2021). One of the hallmark symptoms of ME/CFS is post-exertional malaise (PEM) which involves significant fatigue after exerting oneself with tasks; even being able to complete tasks that may seem less significant, like brushing your teeth, can feel like climbing Mount Everest for someone with ME/CFS. Although this illness has been estimated to impact between 10-40% of the population, of which 25% are either housebound or bedbound, it has been dismissed by many in the medical community for quite some time (Wong et al., 2021). With infectious illnesses being one of the triggers, it does not come as a surprise that there is a link between COVID-19 infections and the development of ME/CFS as a component of Long COVID for some (Wong et al., 2021). Previous ME/CFS cases have been linked to Epstein-Barr virus, enterovirus, cytomegalovirus, human herpesvirus-6, human parvovirus B19, hepatitis C, Chlamydophila pneumoniae and Coxiella burnetii infections (Kerr et al., 2019; Chia et al., 2007).

Is there a relationship between hEDS/HSD, MCAS, POTS, and Long COVID?

Yes, there is certainly a relationship, but some specifics are still unclear. There is a known link between hEDS/HSD and MCAS, where researchers believe various mast cell mediators (like histamine and tryptase) influence collagen and the proliferation of fibroblasts (Seneviratne et al., 2017). These mast cell mediators have been shown to disrupt the integrity of connective tissue in the body (as mast cells are located throughout), explaining the significant impact they can have (Monaco et al., 2022). It is also believed that the link between MCAS and POTS is, in part, related to the impact various mast cell mediators can have on the blood vessels, specifically vasodilation related to vessel laxity (relaxing). This vessel laxity related to MCAS can lead to blood pooling, which is known to both exacerbate and cause orthostatic intolerance; these are significant findings in individuals with POTS (Monaco et al., 2022). It is believed that individuals with hEDS may also have vessel laxity, contributing towards blood pooling and the development of POTS as well (Bonamichi-Santos et al., 2018). Given the relationship between MCAS and Long COVID, the relationship between MCAS, hEDS, and POTS, and the importance of mast cell mediators and appropriate regimens when it comes to treating both acute COVID-19 infections and Long COVID, it stands to reason that this relationship could allow for more effective testing, targeting, and treatments directed at underlying causes. We believe that this relationship should lead providers to screen all individuals with Long COVID for hEDS/HSD, MCAS, and POTS, at the very least. See our Co-occurring Conditions section to read more about these and other commonly seen conditions in our community.

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