A POTS Expert on Treating Post Covid Syndrome Patients

In a COVID-19 Update for the American Medical Association a recent discussion with Mitchell Miglis, MD, assistant professor of neurology at the Stanford Center for Autonomic Disorders at Stanford University, about his experience treating patients with post-COVID syndrome, or “long-haul COVID," and his ongoing research in this emerging area. Below is an edited transcript of this discussion and highlights his work over the last year with patients with post Covid dysautonomia /POTS. I have followed his findings to the letter from the presentation at around 3-4 months after the acute infection, to the myriad of symptoms and the difficulty in finding a specialist who understands POTS. I have struggled to get anyone to understand my overwhelming cognitive dysfunction. Here he likens POTS to a moderately progressive neurogenerative disorder. I have been describing it for over 6 months as "a fully aware dementia". Despite several contacts with health professionals I cannot get anyone to assess me for this. I am sure this applies to many of you too.

In my references is the link to the video discussion but I wanted to put this in black and white for you to take to your doctors if this is affecting you. There is also a link to Stanford's long-haul COVID patient surveyyychhi w wchhiww . whwh lyviea hchhi w .

"We started seeing these patients around March and April of last year, and they were predominantly younger women presenting with the constellation of symptoms that we were used to seeing in autonomic medicine for many years, that of POTS, or postural orthostatic tachycardia syndrome. While not all had POTS, most of them developed symptoms after fairly mild COVID infection and some of their symptoms emerged several weeks later.

They were describing lightheadedness on standing, racing hearts, feeling like they're going to faint, as well as cognitive issues they called brain fog and, of course, fatigue and sometimes GI symptoms.

One theory is that this demographic (younger woman) is predisposed to autoimmune or immune-mediated reactions. We know from prior studies that POTS generally affects women and it does tend to occur after a trigger.

And even before COVID, over 50% of our patients would describe viral prodrome before their symptom onset.

Autoimmunity is sort of the more common mechanism or more recent mechanism that's been investigated in these patients.

There are many other mechanisms, of course, but autoimmunity, as it relates to COVID, is one interesting theory.

We had a patient who was a nurse, an ER nurse, who had somewhat mild symptoms initially. She never required hospitalization for her COVID infection or SARS-CoV-2 infection. And then, her autonomic symptoms developed after those initial sort of parent infectious COVID symptoms improved. And two to three weeks later was when she started to develop more of the autonomic features.

And in her case, I'd say what was a bit atypical was she would have more of these what we call as hyperadrenergic surges, which we do see in some patients with POTS, but I've seen it more in the post-COVID dysautonomia patients. There's increased sympathetic activation.

Some of them develop new onset hypertension, or they can develop orthostatic hypertension, so that not only their heart rate goes up, but their blood pressure goes up when they stand. And they just get these spells that can be confused as panic attacks, just sort of fight or flight responses that are probably autonomic in nature.

Fatigue is very prominent. The cognitive impairment is extremely disabling for most patients but we don't understand why that is. It's probably not just related to blood flow to the brain. It's probably something else systemic, whether that's inflammation or not, we don't know.

A lot of patients can develop these GI dysmotility symptoms. They may have constipation or diarrhea. The autonomic nerves innervate the entire gastrointestinal system. And some patients develop new onset pain. They might develop small fiber neuropathy, and that's been reported after other viral infections, so the virus can cause damage to the small nerves in the skin and elsewhere, and cause various burning-type pains. And then, some patients develop new allergies and are diagnosed with mass cell impairment. And there is a very strong link, I think, between autoimmune conditions, autonomic dysfunction and also allergic function.

We're still in the very early stages of, let alone understanding this, but even thinking about how to treat it. I mean, right now we're approaching this just as we would approach most patients with POTS. Again, not all patients with post-COVID dysautonomia have POTS, but the general paradigm is try to find some medications that control the symptoms and maybe stabilize at least, say, the orthostatic symptoms so they are less lightheaded and they can be more physically active. Treat other components like sleep disorders, migraine, et cetera. And then once that's a little better controlled, then we start thinking about a very gentle physical rehabilitation program. A caveat there is some patients with this syndrome may have more post-exertional malaise, like a typical chronic fatigue syndrome patient would. And in that case, you don't really want to push the exercise too much because that can cause crashes and backsliding in their therapy. This is why we need the studies and, thankfully, the NIH has allocated funding and, hopefully, that'll be what we're doing in the next year. I think probably involving various therapists early, whether that's PT, OT, psychotherapists, a lot of patients develop pretty significant anxiety from depression from this. Think about involving those other providers earlier. And then, if patients do meet criteria for certain other conditions, say maybe POTS. I'd say, from an autonomic perspective, if patients are describing lightheadedness, all doctors should be thinking about just doing a simple orthostatic stand tests in the office, measure blood pressure, heart rate, supine, laying flat. And then, after a few minutes of standing, and seeing if there's clear abnormalities there. But we have to be careful not to subdivide and segment their care with subspecialty referral that can really delay the process of them getting seen.

I think the first step is really ruling out any organ damage or any kind of more serious sequelae of COVID. We know some patients can develop microemboli. Some patients may have small PEs, cardiomyopathy or myocarditis. There are various blood tests. There's no protocol for this, but we typically check D-dimer to make sure that patients don't have clear cardiac or pulmonary damage from their infection. Might be worth referring some of those patients to cardiologists or pulmonologists. And then, if that's not the case, if they do have these autonomic symptoms, there are not many centers that do treat this. We just started with an online global survey about a year ago, partnered with Lauren Stiles at Stony Brook University. And the questions we asked were pretty much all questions related to COVID symptoms, not specifically focusing on dysautonomia, but we also included autonomic survey scores, quality of life scores. And we're just doing a first cut of that data now and, hopefully, we'll be able to publish soon on it. At this point, we have over 4,000 participants for this online component and then filtering that down. We're just including patients that had a confirmed positive SARS-CoV-2 tests. A lot of these patients early in the pandemic did not have access to testing and that's another gap in the data here. But just including those who had confirmed testing, we came out with about 700 or so patients. And what we found is the majority, 80%, were not hospitalized. The mean age is around 40 to 50 years of age, 85% are women and

their mean autonomic scores are somewhere on level of moderate to severe disability. Something similar to what we would see in a moderately progressive neurodegenerative disorder, some of which require wheelchair assistance. The disability on the autonomic side is fairly prominent and the important point there is it's predominantly women and the initial infection tends to be quite mild, at least from what we've seen.

The next phase, which we're also developing, is to do objective autonomic testing on these patients and do several markers of immune function and blood tests and see if we can somehow detect some signal that would indicate which patients are predisposed to developing this long COVID syndrome".


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