It’s been a while since my last Long Covid (LC) Series post. That is because I am better but not normal. The good news is that I have been enjoying summer in Flagstaff. There have been social interactions (virtually and outdoors), Llumination Quests (ask me about this), reading, research, writing, consults, and precious time with my husband, pups and garden. That said, I continue to experience a form of dysautonomia that can limit my enthusiasm for activities. Wanting to understand more, I did extensive dysautonomia (pronounced dis-auto-NO-me-ah) and postural orthostatic tachycardia syndrome (POTS) research. I discovered that they are not one and the same. Dysautonomia is a general term that describes dysregulation of the autonomic nervous system (ANS). People with dysautonomia may experience a variety of symptoms when dysregulation occurs. POTS is a specific form of dysautonomia.
One of the most common presentations of dysautonomia is POTS. Patients with POTS may experience lightheadedness, dizziness, presyncope, syncope (fainting), tachycardia, and/or hypotension upon standing. One can imagine how it might feel to experience these symptoms when doing something as simple as getting out of bed or rising from the dinner table. There can be a mental health component to this syndrome (i.e., low mood, depression, anxiety, stress). This recent video includes a discussion with Kate Murray, MPH about Long Covid and POTS, and includes commentary from a first responder who now suffers from POTS. To learn more about POTS and its presentations, watch this Ground Truths podcast featuring cardiologist, Dr. Eric Topol and neurologist, Dr. Svetlana Blitshteyn, founder and director of the Dysautonomia Clinic in Buffalo, New York.
For a bit of very simple biological background, the ANS controls involuntary bodily functions (i.e. heart rate, blood pressure, respiration, etc.), and has different divisions. The division called the sympathetic nervous system (SNS) helps prepare the body for activity (think “fight or flight”). The parasympathetic nervous system (PNS) helps to calm and quiet the body after activity and maintains homeostasis (think “rest and digest”). The enteric nervous system (ENS) facilitates digestive processes, including nutrient absorption. These systems are interconnected in a complex web of neurons, ganglia, nuclei, and glial cells. They have integration points in the central and peripheral nervous systems.
Following the January 2023 trigger event, I experienced POTS symptoms that were debilitating and frightening. They motivated me to seek a specialist in complex illnesses. The POTS tilt test was negative, but I still suffered from presyncope, racing heart, shortness of breath, a feeling of being unmoored (aka spacey or brain fogged), and hypotension. Upon seeing a negative tilt test, Dr. Metz’s recommendations included stabilizing mast cells and a cardiovascular and pulmonary workup to rule out organ damage. The cardiac and pulmonary doctors reported normal findings. They were perplexed by my symptoms. This is often the case when patients suddenly turn up with POTS symptoms. If you or someone you know is suffering from similar symptoms, consider care with a cardiologist or pulmonologist; a specialist in complex illness (i.e., immunologist, hematologist, or allergist); and/or at a Long Covid Clinic. Please be aware that even mild or asymptomatic covid infection can result in LC symptoms (like POTS) that emerge four or more weeks following infection.
In my case, once mast cells stabilized, the worst of the POTS-like symptoms resolved. As described in my previous LC post, there have been many interventions to help me achieve an acceptable health baseline. What I am left with now are symptoms that may be attributed to dysautonomia or MCAS. These symptoms were not present before I had COVID-19. Triggers are varied and there are long periods when I’m so stable that I think I’m past all of this. But sometimes (often without warning) things like temperature or barometric pressure changes, excess humidity, bright light, loud sounds, or unusual smells can trigger POTS-like symptoms. Being acutely aware of my status as a highly sensitive person (HSP), I find that meditation, energy balancing techniques (like EFT Tapping), Pacing, the 4-7-8 breath, physiological sigh, and (at times) medication can help me when this happens. Supporting the nervous system with calming activities is certainly beneficial. It is also extremely important to work with a health care professional for guidance in choosing the right remedies to palliate specific symptoms.
I’m also left with an autoimmune condition that includes anaphylaxis to known (cats and wasp stings) triggers. The unknown triggers I’ve discovered include environmental factors (i.e., chemicals, perfume, scented candles, smoke, pollen, etc.) and certain foods. I cannot always eat what I want without unpleasant reactions that can range from nausea to anaphylaxis and the many things in between. I have ample tools and support to explore the more obtuse (metaphysical) aspects of these lingering symptoms. Additionally, knowing about the physical aspects can open a door for healing and balance. Before covid, I was reliably energetic, capable, happy, and content. Having my body be this way has given rise to a sort of abiding and low-level anxiety (stress) that gets in the way of those things. So, this summer with my extra energy (spoons), I went into research mode for more understanding about how to manage the situation.
My research turned up gastroenterologist, Laura Pace, MD, PhD who specializes in gastro-neuro-enterology (a type of neurobiology). It is common knowledge that gut health, and the immune system are closely linked. In this video, she offers a layperson’s guide to the cause of digestive issues that many physicians are seeing in their post-covid patients. Dr. Pace explains how dysautonomia may give rise to new onset allergies, motility disorders, nutrient malabsorption, gastroparesis, irritable bowel syndrome (IBS), and more. Just the first seven minutes of this presentation explains a lot about how viral infection can lead to lingering autoimmune disorders.
Dr. Pace’s video reminded me how much I enjoyed studying all aspects of the nervous system in college. I was especially interested in the relationship between the autonomic nervous system and stress-related physical illness. The video reminded me that viral infection can cause inflammation of the ANS’s delicate fibers, resulting in autoimmune disorders and increased anxiety (stress). This rediscovery was like finding a diamond buried in the mud. I felt a sense of relief knowing that these physical symptoms may be lingering because the very fibers of my nervous system are healing. Realizing this has helped to quell that low level anxiety. Understanding this has increased my patience with and holding space for my own biology. Science tells us that nerves can heal and regenerate after trauma, but it can take months or even years. Thank goodness for my radical acceptance practice.
One last note about the gut and dysautonomia. In 2023 scientists discovered that LC patients had reduced levels of serotonin, which is primarily produced in the digestive tract. Serotonin sends messages between cells throughout the body and especially in the brain and GI tract. Lower levels of these important messengers can result in depression, anxiety, insomnia, memory loss, slow wound healing, and disruption of gastrointestinal homeostatic processes (sounds like dysautonomia to me). Low levels of serotonin can also equal low levels of joy or a gloomy mood. My gut feeling (no pun intended) is that as I continue to work with my doctors and practice all the things that help to keep my mind calm and my spirit peaceful, ANS healing, and therefore gut healing is possible. For this, I am grateful.
If you are living with LC, dysautonomia, POTS, or other neurological physical challenges, I have great empathy and great hope that something in this writing will bring comfort, a sense of relief, and a hope for your own healing. Thank you for reading! Next time in the LC Series I will say more about MCAS.
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions.
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