This post, written by Mary Carpenter in the very first days of the pandemic (March 16, 2020) was unexpectedly prophetic: dysautonomia turns out to be a common symptom of “long-haul” Covid. Specifically, cardiovascular dysautonomia —abnormal increase of the heart-rate on standing, along with the risk of fainting—may be part of a lasting autoimmune reaction to the virus.
WHEN SIXTY-something DC lawyer D.M. fainted three times over a period of a few weeks, one ER doctor said she’d had a stroke. Then a neurologist said no stroke, but maybe a meningioma, a generally benign tumor occurring on the brain’s membranes.
Months later, the fainting has stopped, but D.M. is still looking for a reason for her ongoing symptoms, which include extreme fatigue, inexplicable bouts of feeling hot and sweaty—she had no hot flashes during menopause 10 years ago—and pulse rates above 100.
(She also takes medicine to control blood pressure, after her systolic reading occasionally spiked as high as 180. Pulse rates refer to the number of heartbeats/minute; the normal range is between 60 and 100, while blood pressure indicates the force of blood moving through the vessels.)
Although high blood pressure and occasional bouts of fainting can point to myriad diagnoses, one that may be “significantly more common than we realize,” as Mayo Clinic neurologist Jeremy Cutsforth-Gregory puts it, is dysautonomia: disruption in the autonomic nervous system, which is responsible for bodily functions, such as blood pressure and digestion.
The “simple faint,” also called neurocardiogenic syncope (NCS), is one of the most common signs of dysautonomia, occurring either occasionally or often. NCS patients experience a recurrent, transient loss of consciousness accompanied by sudden decreased heart rate and lower blood pressure, and then spontaneous recovery.
(The simple faint can also refer more specifically to “vasovagal” syncope, fainting triggered by an emotional event.”)
The other common sign is postural orthostatic tachycardia syndrome (POTS) — lightheadedness on standing up. Without an immediate reaction from the autonomic nervous system to get blood moving back up toward the head, it remains in the lower part of the body, making the heart beat faster and blood pressure drop suddenly. Most POTS patients have other symptoms, such as fatigue and headache.
What sends the nervous system out of whack is often a previous health trauma, such as cancer treatment, infections or food poisoning; a mental health trauma; or something simpler like dehydration or stress. For about half of those with POTS, the condition follows an immune reaction to an infection—and auto-immune markers remain in sufferers.
Auto-immune diseases, such as multiple sclerosis and diabetes, are often the primary diagnosis in dysautonomia sufferers. Many others have at least one additional diagnosis, such as anemia, chronic fatigue or Guillaume-Barre syndrome, for which treatment can diminish dysautonomia symptoms.
Although sufferers like D.M. can keep working, others like Tori Foles have been “bedridden, hospitals . . . battles every day . . . last couple of years,” according to her husband, Jaguars quarterback Nick Foles.
“There is a huge knowledge gap” concerning the nervous system, how it works and why it breaks down, according to Ryan Cooley, co-director of the Dysautonomia Center in Grafton, Wisconsin. Because detecting dysautonomia is challenging and can take years, patients often tell doctors who finally make the diagnosis: “No one believed me.”
Treatment depends on individual symptoms, which vary widely among 15 different kinds of dysautonomia. For some, advice includes drinking fluids, wearing compression clothes to help prevent blood from pooling in the legs and boosting salt levels.
For D.M., the number of medications prescribed so far, including those to treat low potassium, low thyroid and high blood pressure, seems overwhelming. Doctors have confirmed her meningioma but say it’s not worrisome. Her next steps involve more specialist visits, including to the cardiologist who originally cleared her but now, at D.M.’s suggestion, has scheduled a carotid artery test; and a neurologist to figure out the fainting, though she’s still searching for someone local who specializes in NCS.
Meanwhile, debilitating fatigue makes it difficult for her to progress on any of these fronts, although she still makes it through a full day of work and loves her job.
Every Tuesday, well-being editor Mary Carpenter delivers health news you can use.