Can Your Long-haul Covid-19 Symptoms be Explained by Dysautonomia?
I have received exactly one helpful piece of medical advice from an actual medical practitioner in the four months since I became sick…
Photo by Kelly Sikkema on Unsplash
I have received exactly one helpful piece of medical advice from an actual medical practitioner in the four months since I became sick with Covid-19. “Drink more electrolytes,” he said, and he was right. My tingling limbs and restless legs improved.
I’ve also received rather a lot of bad advice from medical practitioners. When I called a primary care physician while I was bedridden in mid-March with a fever, tachycardia, extreme dizziness, aching muscles, gait abnormalities, vision disturbances, shortness of breath, kidney pain, sore throat, and chest pain, he offered this suggestion: “Try going for a bike ride and see if that helps you feel better.”
I shit you not. That is literally what he said to me. I explained again that it was a struggle to walk from my bed to the bathroom, at which point Dr. Bikeride did (to his credit) seem mildly embarrassed by his own advice. “Well, wait and try a bike ride in a few days when you are feeling better.”
For the record, I had not called him to inquire about what I should do once I started feeling better. To emphasize this point, I asked him again about my heart rate, which was 40–50 beats per minute faster than usual, even at rest. “It’s normal for your heartrate to be a little higher when you’re sick,” was all he had to offer. Needless to say, I will not be turning to him for help again. He can take a bike ride, for all I care.
When I finally made it to my first cardiology appointment, the nurse practitioner ordered a battery of tests and then presented these instructions: “Don’t google your symptoms. And be careful about support groups because people will try to offer medical advice.”
I like to think she meant well. Maybe she thought that researching my symptoms would make me anxious. Maybe she thought I would try some dangerous drug or supplement combination on the recommendation of a friendly internet stranger. Since I neither expressed anxiety nor displayed poor judgment in her office, though, I wonder at this advice.
Maybe it would make sense for me to sit idly by and let the experts figure out why my body is broken if: a) there were any genuine experts on Covid-19 and b) our medical system wasn’t broken at the same time. But in a world where you have to endure two months of tachycardia before you see a cardiologist (who admits to having treated exactly zero other Covid-19 patients), wait another month to complete the necessary cardiac and pulmonary tests, and then wait another two months to see yet another cardiologist because the first one doesn’t have the equipment for the test you really need? Well, fuck. In that world, I say join a support group and google the hell out of your symptoms.
I have logged countless hours in the Body Politic Covid-19 support group. The thousands of Covid-19 survivors there have become my lockdown besties (along with Google, of course). It was in comparing notes with other survivors that I began to connect the dots and wonder whether my cardiac symptoms might actually have a neurological basis. Could my tachycardia have the same underlying cause as my dizziness, headache, sinus pressure, ear pain, fatigue, shortness of breath, brain fog, and short-term memory issues? What, if anything, could my body’s failure to properly regulate heart rate have to do with the strange fluctuations in my body temperature, blood pressure, and blood sugar?
In June, the Body Politic Covid-19 support group hosted an Ask-Me-Anything with Dr. David Putrino, Director of Rehabilitation Innovation for the Mount Sinai Health System in New York. Mount Sinai runs the first-of-its-kind center for post-COVID care, and so its clinicians and researchers have learned from the experiences of thousands of Covid-19 patients. Dr. Putrino shared with the group what the dominant theory among researchers at Mount Sinai is regarding long-haul Covid-19 symptoms: “We think that this is some sort of post-viral dysautonomia . . . , meaning that the virus caused normal autonomic nervous system to be disrupted.”
Dysautonomia. Strangely this isn’t a word any of my physicians had mentioned to me. Dysautonomia is the dysregulation or failure of automatic processes regulated by your nervous system. These processes include — among other things — heart rate, blood pressure, blood sugar, digestion, and temperature regulation. Ding, ding, ding!
POTS (postural orthostatic tachycardia syndrome) is among the most common forms of dysautonomia. I happen to have two friends with POTS, who both pointed out the parallels between my ongoing symptoms and symptoms of POTS. I dismissed the idea that POTS could explain my million covid-induced ailments, though, because descriptions of POTS tend to focus on the fact that symptoms flare while you are standing. Mine do flare while I’m standing, but they also flare when I’m sitting, and on bad days, they accompany me to bed. Plus, I have so many symptoms, not just elevated heart rate and lightheadedness.
In the process of extensively googling ME/CFS and dysautonomia to try to make sense of my long-haul Covid-19 symptoms (no doctor will ever care as much about my health as I do), I found myself with many questions that I couldn’t answer. I took these questions to one of my POTS friends and learned that: 1) People with POTS are often very symptomatic while sitting and sometimes (especially during a symptom flare) while lying down, 2) POTS can cause a startling array of symptoms, including but not limited to racing heart, heart palpitations, dizziness, shortness of breath, headache, fatigue, exercise intolerance, heat intolerance, chest pain, tingling limbs, pins and needles sensations, malaise, leg pain, back pain, and gastrointestinal issues. 3) While exercise is a key component of treatment for POTS, overexertion triggers symptoms and can cause significant flares either at the time of exercise or 1–2 days later.
If you are a Covid-19 long-hauler, you likely hear your own experience reflected in some of the symptoms listed above. It isn’t horribly difficult to figure out whether or not these symptoms may be attributable to POTS. Rather than waiting another two months for a doctor to perform a tilt-table test — the definitive test for POTS — I conducted my own poor-woman’s version in my living room. I lay down on the ground for several minutes to allow my heart rate to settle. After determining my resting heart rate, I stood up. I planted my feet and didn’t move. Within just a couple of minutes, my heart rate had increased by 40 bpm. My dizziness increased by the second, the brain fog rolled in, my head ached, and my heart continued to race. In adults, a heart rate increase of 30+ bpm within the first ten minutes of standing still indicates POTS. Ding, ding, ding again!
It’s been three weeks since my living room POTS test. Three weeks isn’t much time, and I recognize that I will know more in another twenty-one days than I know now. What’s special about these past twenty-one days is that I’ve had no relapses, no lasting symptom flares, no crashes. I’ve had progressively fewer and fewer symptoms and been able to accomplish more than in any other period since falling ill with Covid-19 in early March. I can take care of my three kids, exercise, cook meals, survive stressful Zoom meetings, keep the house cleanish and still (usually) have energy to read or write in the evening.
I don’t have a miracle cure to offer you, but I can offer you my experiences and a bit of practical advice. Not medical advice. I’m no doctor, and I don’t want to become that Internet Stranger that the cardiology nurse practitioner was so worried about. I also don’t want to sit idly by and keep my experiences to myself while thousands of others are struggling along paths similar to my own. My experiences may be different than yours and my advice may not be the right fit for you. Guess who gets to be the judge of that? You, of course. You are the closest thing there is to an expert on your own body. Here is my offering to you. Take it or leave it.
Some practical advice. If you are a Covid-19 long-hauler and find your symptoms and experiences mirrored in any thing I described above, conduct your own living room POTS test. You don’t necessarily need to stand still for a full ten minutes. In fact, if you are very sick, ten minutes is likely to be too much for your body. If you think you might be at risk of fainting, then have some throw pillows (interior decorating advice!) or a loved one (relationship advice!) ready to catch you. The goal is to compare your heart rate while lying down to your heart rate when you’ve been standing perfectly still for some period of time, so don’t shift your weight or otherwise use your leg muscles any more than is strictly necessary for standing. If your heart rate increases by 30 beats per minute or more within ten minutes of standing up, then it’s very likely that you have POTS. Note that an increase of 10–15 bpm is considered normal. If you find yourself below the POTS line but outside of the normal range, try testing again at a different time of day. People with POTS are often most symptomatic in the morning. If you are in the normal range but experiencing myriad long-haul symptoms, then keep a careful health log, try to find a supportive physician, consider researching other forms of dysautonomia, and compare notes with other Covid-19 long-haulers to find your path toward fuller health.
If you do seem to have POTS based on your living room test, you will also need a supportive and informed physician! I confess I’m still working on that piece of my own puzzle, and it has proved surprisingly difficult. Knowing that the medical advice that I need — and the medical advice that you need — may be many weeks or months in coming, here is a bit more advice from the practical realm.
Some culinary advice. Salt is the new kale. Eat it with everything. (Well, maybe not if you have hypertension; that’s a question to take to your doctor.) To understand why eating salt can help reduce POTS symptoms, we first need a basic understanding of what POTS is.
According to Dysautonomia International, “POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal.” POTS patients may have normal EKGs, normal echos, normal chest x-rays, and normal blood work — all while their hearts behave very abnormally.
The mechanisms behind this abnormality in heart rate regulation may vary from individual to individual, and there is still much that researchers do not understand. The gist of the issue, though, is this: when we move from lying down to an upright position, the force of gravity pulls blood downward. As more blood pools in the abdomen and legs, less blood is available to the brain, which can cause a wide range of symptoms, including lightheadedness, brain fog, headaches, fatigue, shortness of breath, and pain. The body compensates for the downward pull of gravity by releasing norepinephrine and epinephrine (adrenaline). Norepinephrine is supposed to cause blood vessels to constrict, making it easier for the heart to pump blood upward. Epinephrine increases heart rate and causes the heart to beat more forcibly.
If you have POTS and you move from lying down to an upright position, gravity pulls your blood into the lower body, norepinephrine and epinephrine are released, but your blood vessels do not respond normally to the norepinephrine. Rather than constricting, they remain dilated, making it difficult for the heart to pump blood up from the legs and abdomen. So the body releases even more norepinephrine and epinephrine. You can probably guess the results: the heart rate increases still further but the blood vessels do not constrict adequately. As blood continues to pool in the lower portion of the body, the brain becomes more deprived of oxygen and the body becomes more flushed with adrenaline, triggering a worsening of POTS symptoms.
What does salt have to do with all of this? You mean besides the fact that it is tasty and can briefly make you forget all of your woes? One way to reduce the impact of your blood vessels stubborn refusal to constrict (those stinkers!) is to increase your blood volume. Consuming salt, along with plenty of fluids, is one of the simplest ways of accomplishing this.
The normal daily recommended sodium allotments is 2,300 mg, which is about one teaspoon of table salt. According to the CDC, the average American adult consumes much more sodium than this — around 3,400 mg per day. Prior to my living room POTS test, I wasn’t a big salt eater. I’d never bothered to measure my intake, but since I eat very few processed foods and do most of my own cooking (typically using a bit less salt than recipes call for), I estimate that I was eating about one-half of a teaspoon of salt in a typical day. POTS patients are often advised to consume twice the normal recommended sodium allotment, which amounts to about two teaspoons of table salt per day. Given that I have no history of hypertension, I made the choice to increase my sodium intake without first consulting with a doctor. This may not be helpful or even safe for everyone, but for me, it was revolutionary. I noticed immediate improvement in symptoms like dizziness, headache, fatigue, and heart palpitations. Even the persistent sinus pressure began to abate. In that first week of my new and saltier life, every day was better than the one that preceded it.
(It’s worth noting that I’m opting for relatively healthy sources of salt. I eat a pinch of sea salt with every glass of water I drink, salt my salads and home-cooked meals generously, add extra salt to my favorite electrolyte drink, and gorge on pickles and fancy olives.)
May I suggest a beverage pairing? Remember how I said that salt is the new kale? Well, kale is full of water, and for salt to do its job and boost blood volume (by increasing plasma production), it needs a lot of water, too. I literally drink a gallon or more of fluid every day. (Listen to your body on this — I don’t force myself to drink more than feels good.) I discovered early in my Covid-19 journey that if I didn’t drink a ridiculous amount of water, my symptoms worsened, so this fluid guzzling isn’t especially new for me. What is new is that I’ve increased my electrolytes still further. Salt may be our friend, but sugar is not, and I suspect artificial sweeteners and food dyes aren’t either. To get my electrolytes and vitamin C, I drink two servings of a tasty stevia-sweetened electrolyte beverage every day.
There are, unfortunately, a few beverages that you should avoid if you want to minimize your POTS symptoms. Basically, all the alcoholic ones. Caffeine is a bit different. Some people report that it helps them, others report negative effects. I personally find one or two servings of caffeine per day to be neutral.
Some fashion advice. If you don’t already own at least two pairs of compression socks, it’s time to hop on the latest trend and order this wardrobe essential! Why compression socks? Remember what I said about how blood pools in the lower body when POTS sufferers sit or stand? Compression helps to pump the blood back upward.
Some people opt for abdominal binders or full compression tights. So far, I’ve just tried out the socks. Mine finally came in the mail about a week ago. At that point, I was already feeling better than I have felt since pre-Covid. And still, when I put them on, I discovered that wearing them while sitting or standing reduced my heart rate by at least 10 (and sometimes up to 20) beats per minute. In other words, when I’m wearing compression socks (and eating salt), my heart rate is no longer in the POTS range most of the time. When I’m wearing compression socks, I can comfortably sit for long periods of time. I can go grocery shopping. I do still find that I can’t stand perfectly still for very long without getting uncomfortable, but a bit of fidgeting, pacing, or weight shifting are usually enough to compensate.
A final note about compression socks: don’t wear them while sleeping. When the body is horizontal, there is a slight risk that they could actually cut off blood flow to the feet.
Some fitness advice. Upright exercise is overrated! If standing and even sitting trigger symptoms, look for ways to strengthen your muscles — including the heart muscle — without triggering your symptoms. Before discovering that my long-haul symptoms are largely attributable to POTS, I experienced multiple relapses triggered by exercise, especially exercise outside in the heat. (Heat, it is important to note, dilates blood vessels and is a significant trigger for many people with POTS.) This led me to fear that all exercise would prompt relapses, and so I became very cautious about doing anything, causing me to miss out on the benefits that appropriate exercise might have offered.
Exercise increases blood volume (by increasing red blood cells) and improves cardiac efficiency. Those are both really helpful things if you have POTS! Unfortunately, POTS also makes it very difficult to exercise in the first place. So how can you reap the benefits of exercise when you have POTS? I can only offer some general suggestions and tell you what is working for me.
Listen to your body, and begin with exercises that do not trigger symptoms. This will likely mean beginning with supine or prone exercises like gentle stretching, yoga, or resistance training. Search for POTS exercises on YouTube; there are entire workouts that can be completed while lying down. If you have safe access to a pool, swimming is amazing. The gentle pressure of the water acts much like compression socks, and the cardiovascular exercise can help strengthen the heart. Many people with POTS use recumbent exercise bikes or rowing machines, as well. In the middle of a pandemic, it is admittedly harder to access such equipment, but you may find that you can perform other seated exercises at home. If you do feel well enough to walk, wear your compression socks, try to walk when it’s not very hot outside, and consider taking several shorter walks during the day rather than a single, longer one. When you are finished exercising, drink two glasses of water, eat some salt (if you’re doing that), and lie down until your heart rate returns to its typical resting rate.
Every couple of days, I find that my body feels ready for a bit more exercise. If my heart rate takes a long time (more than, say, twenty or thirty minutes) to fully calm down after a workout, I eat more salt, drink more water, and take it as a sign that I should go easier or exercise in cooler temps next time. Three weeks ago, I was delighted to be swimming a few laps and going for short walks. Now I’m engaging in more vigorous exercise at least twice a day: comfortably swimming laps for 30 minutes with little or no stopping, practicing yoga, cycling with low resistance, or going for brisk walks of up to one hour with a few tiny bursts of jogging. (I was a runner pre-covid.)
As you find your path forward with exercise, keep in mind that your heart is a muscle. When you challenge it gently, it strengthens and grows, becoming more efficient in the process. On the other hand, if you challenge your already-stressed-out-and-deconditioned heart too much, you risk triggering a relapse. You will do a better job of determining the appropriate balance of rest and challenge in your own life than I can possibly do. I personally aim only for very gentle challenge at this point — never for the feeling of having to push through.
Some shopping advice. If you don’t already own a convenient heartrate monitor, it’s worth the investment. My FitBit came in the mail on the day I realized I have POTS. It’s been interesting to watch the patterns. If I’m standing still cooking dinner or waiting in line at the grocery store, I can raise my heels up and down to activate my calf muscles, and my heartrate drops. When I swim laps, my heart rate is lower than it is after a couple minutes of standing still on land. I can see the effect of heat and stress on my heart rate. All of this information gives me power — the power to anticipate and avoid triggers, the power to adjust my behavior, the power to manage my symptom so that I can live life.
It’s been thrilling to watch my resting heart rate creep down bit by bit over the past three weeks. On day one with my FitBit, it was 72 bpm. Three weeks later, it’s down to 62 bpm. Why? Salt? Fluids? Exercise? I suspect it’s a combination of all of these adjustments. The increase in salt and fluids allowed me to begin exercising more. The compression socks have allowed me to spend more time on my feet. All of that has helped strengthen my heart. I’ve even broken free (for now) of a few symptoms that I hadn’t expected to be associated with POTS, including insomnia and sinus pressure.
Some reading advice. Most of the information I’ve gathered comes from Dysautonomia International. It’s an excellent resource, and I recommend that you check it out. What’s more, Dysautonomia International will be hosting a webinar on Dysautonomia and Long-haul Covid-19 on July 27. I will definitely be attending and hope you will too!
Some personal advice. Long-haul Covid-19 is an arduous, bumpy journey. You won’t be supported or believed by every person you share your experiences with, and unfortunately that holds true of doctors, too. In addition to knowing relatively little about long-haul Covid-19 symptoms, many doctors know very little about dysautonomia. You deserve to be heard, believed, and supported. To the extent that you can, ditch the doctors and “friends” who don’t listen to or believe you. Send them on a bike ride, and find new doctors and friends who do support you.
I would be honored to be part of your support network. I’m working to develop a newsletter (“Corona Cafe”) to support other long-haulers in their journeys. The idea is still new and rough with a few kinks to work out, but my basic plan is to send out one or two emails a week with brief messages of hope, tips for navigating ups and downs, wisdom gleaned from my own long-haul experiences, and links to helpful resources. You can subscribe here.