You Have Long-Hauler COVID—Now What?
One woman shares her story of living with symptoms that refuse to go away.
What does long COVID feel like for me? My heart races from time to time, and I feel dizzy when I least expected it. My sleep habits have changed, too. I’ve always been a pretty good sleeper; now, I toss and turn and wake up in the middle of the night.
But let me back up.
I started to use the oximeter my mom sent after my 17-year-old son got a positive COVID test and I presumably got COVID from him (more on that later). The oximeter tracked my heart rate several times a day. Sure enough, when it felt higher, it was hitting around 110—sometimes higher. A normal resting heart rate is 60 to 100 beats per minute.
When the elevated heart rate wasn’t going away about two weeks into January after having COVID in late December—my son and I had a quarantined Christmas—I contacted my doctor. This is where my journey with long COVID (a.k.a. being a COVID long hauler) began.
Defined by the Centers for Disease Control and Prevention (CDC) as having “a range of symptoms that can last weeks or months after first being infected with the virus that causes COVID-19,” long COVID affects about 10% to 30% of people with COVID. While research shows women are slightly more likely to have it, long COVID affects people of all ages, including those who are otherwise healthy.
That’s me. I’m not perfect, but at 47 years old, I’m reasonably strong for my age thanks to starting yoga as a teen. I’m also great about carving out time several days a week for cardio and light weight-lifting. But there I was with a speeding heart rate, breathing issues, and sleep problems.
The Long—and Winding—COVID Road
For starters, I never had a positive COVID test. I went for testing three or four times in December, while my son was sick and then when I was sick. When I felt my worst, there were no PCR tests available at my testing site—it was near Christmas and with so many people testing, they had run out. Even so, my symptoms were consistent with COVID—and I had the direct exposure with my son at home. I, and my doctor, could think of no other explanation.
So, my COVID came around the holidays and it never left.
After a brief telehealth visit in mid-January, my primary care doctor saw me in person a week later. I’m always a little nervous at doctor’s appointments, so my already elevated heart rate reached 120 while I was there. My doctor ordered various tests, including an EKG, a heart echocardiogram, labs, and a CT chest scan. These tests would detect any heart abnormalities and blood clots, which are a risk after having COVID. Aside from some inflammation in my lungs that my doctor says was likely linked to COVID-19, everything else appeared normal.
I was diagnosed with tachycardia, or a fast heart rate and prescribed metoprolol, a beta blocker that lowers the heart rate. I was referred to a cardiologist, and found myself rushing to and from appointments, in hopes of figuring out what was wrong with me. I was both nervous about what they’d find but also about how I could get my work done—I’m a single mom and the owner of a freelance writing business—with so much time spent in exam rooms.
In early February, more health issues popped up, including muscle spasms, rib pain, constipation, and atypical anxiety. Everyone tells me I’m a laid-back person, so anxiety was not in my usual wheelhouse. Still, the fear of the unknown from symptoms plays a big role in the long COVID experience.
At this point, I was learning more about long COVID. Despite my multitude of symptoms, I was grateful that I was able to continue working and didn’t have the debilitating fatigue and brain fog that anywhere from 54% to 79% of long haulers develop, according to the group Survivor Corps. Still, the accelerated heart rate was scary. Despite the tests, could it still be something more serious? Will I have it forever? It’s caused me to change some routines, like avoiding alcohol, caffeinated coffee, and my migraine medication, all of which have been shown to raise one’s heart rate.
I also realized my sleep issues were not improving, and I wondered if I had sleep apnea, a condition that causes you to pause your breathing several times an hour each night. Sleep apnea raises your risk for several serious conditions, including heart disease and stroke. I could feel myself waking up a lot more than before I had COVID.
My cardiologist confirmed he had several other long COVID patients like me. He ordered an at-home sleep study and once I got it in the mail, I used the test’s clunky straps, nasal cannula, and oximeter for two nights in a row. After that, my cardiologist confirmed that I had mild sleep apnea. The apnea also increased my heart rate to up to 111 while sleeping during the testing nights, he said. However, he didn’t recommend any formal treatment yet beyond sleeping on my side and making other lifestyle changes, some of which I was already doing. Many people with sleep apnea, including both of my parents, use a continuous airway pressure, or CPAP, mask to provide more oxygen while sleeping. This may still be in my future. Sleep apnea has a genetic component and perhaps I’d develop it eventually. Still, I’m convinced that COVID-19 pushed me to have sleep apnea sooner. Some studies of long haulers confirm that sleep apnea can be an aftereffect of having COVID-19.
Since that perfect storm of symptoms in early March, my long COVID symptoms have mostly stabilized. The two issues I seem stuck with for now are the faster heart rate and sleep apnea. I’ve come to approach them like any chronic health issue. I monitor them, and I have my good days and bad days. (Anecdotally, doctors have reported that getting the COVID vaccine seems to improve long COVID symptoms, particularly in those with brain fog. I’m fully vaccinated now and wonder if the vaccines will jolt my heart or sleep issues back to normal.)
No two long COVID stories are the same, but by sharing mine I hope to encourage others to take notice of symptoms after a COVID diagnosis and provide some ways to cope. Here are a few things that I wish I would have known before my ongoing experience with long haulers COVID.
Find health providers who will acknowledge what you’re feeling. Long COVID is very real. If you don’t feel like your health provider takes it seriously, find someone else who will. You may even want to reach out to a post-COVID care clinic. These are organizations with doctors from different specialties dedicated to the care of long haulers. They’re in 40 states now and counting.
Turn to online resources. There are groups on Facebook that unite long haulers to share their experience but also to rejoice when they start to feel better. COVID-19 Long Haulers Support and the Facebook page for Survivor Corps are two groups to consider. When I found the COVID-19 Long Haulers Support group, I thought, “These are my people!” Even without posting, it still has been comforting to read messages from others like me.
Track your symptoms. Whether it’s on paper or on your phone, monitor your symptoms each week (or daily, if you find that helpful). Tracking symptoms each week provides information for when you meet with doctors and gives you the chance to analyze how your symptoms have evolved.
Give yourself enough time to rest. You may not develop sleep apnea, but there’s a pretty good chance your sleep has changed since having COVID. It could be from changes to your body or just the general worry that the virus causes. We all are busy, but make sleep high on your priority list. I try to go to bed even a little earlier than before, knowing that I may wake up in the middle of the night and have trouble going back to sleep. That way, I still get the recommended seven to eight hours a night (but what I wouldn’t do for some pre-COVID restful sleep). Going to bed earlier is a little boring, but it helps me to have energy in the morning, which is when I tend to get the most done.
Eat right. I’m not going to tell you what to eat or what vitamins or supplements could aid your recovery from long COVID. The jury is still out in this area, and everyone may have different results. (I have started a vitamin D supplement this year, in addition to a probiotic.) The point is to have a discussion with your health care provider and/or a dietitian. A well-rounded, balanced diet with enough hydration is never a bad thing.
Learn from those who have chronic diseases. Especially if you’re dealing with long-term brain fog and fatigue, it’s helpful to find out how people with multiple sclerosis, fibromyalgia, and other chronic health issues cope. Their symptoms may be similar, and researchers are exploring the link between long COVID and conditions like fibromyalgia and chronic fatigue syndrome.
Celebrate the victories. Experiencing long COVID is scary because health experts just don’t know how long symptoms will last. Yet there’s hope in that, too. Your horrible few months could gradually improve and your symptoms will stabilize. Others are getting better. Celebrate any improvements you have.
- Alcohol and Heart Rate: European Society of Cardiology. (2018.) “Drinking alcohol makes your heart race.” https://www.escardio.org/The-ESC/Press-Office/Press-releases/drinking-alcohol-makes-your-heart-race
- Belladonna and Heart Rate: U.S. National Library of Medicine. (2021.) “Belladonna.” "https://medlineplus.gov/druginfo/natural/531.html
- Caffeine and Heart Rate: Sutter Health. (n.d.) “Caffeine impact on health rate.” https://www.sutterhealth.org/ask-an-expert/answers/caffeine-impact-on-heart-rate
- COVID-19 Testing and False Negative Results: PloS One. (2020.) “False-negative results of initial RT-PCR assays for COVID-19: A systematic review.” https://pubmed.ncbi.nlm.nih.gov/33301459/
- Long COVID Definition, Symptoms, and Info: Centers for Disease Control and Prevention. (2021.) “Post-COVID conditions: Information for healthcare providers.” https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-conditions.html
- Long COVID Symptoms and Info (1.): The Lancet. (2021.) “Long-haul COVID: Heed the lessons from other infection-triggered illnesses.” https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00446-3/fulltext
- Long COVID Symptoms and Info (2.): medRxiv. (2021.) “COVID-19 survivors’ reports of the timing, duration, and health impacts of post-acute sequelae of SARS-Co-V2 PASC infection.” https://www.medrxiv.org/content/10.1101/2021.03.22.21254026v2
- Long COVID Symptoms and Info (3.): JAMA Network Open. (2021.) Sequelae in adults six months after COVID-19 infection. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776560
- Long COVID Symptoms and Info (4.): medRxiv. (2021.) “More than 50 long-term effects of COVID-19: A systematic review and metaanalysis.” https://www.medrxiv.org/content/10.1101/2021.01.27.21250617v2
- Long COVID Symptoms and Info (5.): Centers for Disease Control and Prevention. (2021.) “Post-COVID conditions.” https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html
- Migraine Medication (Sumatriptan) and Heart Rate: Mayo Clinic. (2021.) “Sumatriptan oral route.” https://www.mayoclinic.org/drugs-supplements/sumatriptan-oral-route/before-using/drg-20074356
- Post-COVID Care Clinics: Survivor Corps. “Post-COVID care centers.” https://www.survivorcorps.com/pccc
- Sleep Apnea and the Heart: American Heart Association. (2020.) “What you need to know about how sleep apnea affects the heart.” https://www.heart.org/en/health-topics/sleep-disorders/sleep-apnea-and-heart-disease-stroke