Experiencing the Mystery of Long COVID-19
According to the Centers for Disease Control and Prevention (CDC) and the National Center for Health Statistics (NCHS),new data from the Household Pulse Survey shows more than 40% of adults in the United States reported having COVID-19 in the past, and nearly one in five of those (19%) are currently still having symptoms of “long COVID.” Overall, 1 in 13 adults in the U.S. (7.5%) have “long COVID” symptoms, defined as symptoms lasting three or more months after first contracting the virus, and that they didn’t have prior to their COVID-19 infection. They also found:
- Older adults are less likely to have long COVID than younger adults.
- Nearly three times as many adults ages 50-59 currently have long COVID than those age 80 and older. (And yet, being over 65 is a COVID risk factor?)
I have my ownfully-vaccinated, long COVID experience to report, but so far, my account is the only one I can be sure won’t change, as scientists seem to be changing their minds about what, if anything, can be known about the cause, the symptoms or a cure.
Just this morning (2/1/23), I listened to a Science Friday podcast that focused on the similarities between long COVID and Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis or ME/CFS. This was not my problem. Then I read an article online that unequivocally stated"Despite an overwhelming number of long COVID symptoms previously reported by other studies, we only found a few symptoms specifically related to an infection from SARS-CoV-2, the virus that causes COVID-19."
For me, this was a disheartening and seeminglyinconclusive study, as the seven symptoms narrowed down by a team of University of Missouri researchers—fast-beating heart, hair loss, chest pain, shortness of breath, joint pain and obesity—did not include what I and others I know personally, had suffered, which is a very unusual and unrelenting headache.
One thing scientists and I do seem to agree on is that you don’t have to have had a serious case of COVIDin order to have symptoms that don’t go away for a long time. You are more likely to have one or more of them if you have a pre-existing condition, which includes being over 65. (I’m 79.) In fact, the Mayo Clinic’s website says that “Anyone who gets COVID-19 can have long-term effects, including people with no symptoms or mild illness.
My case of COVID-19 started with a scratchy throat that I at first attributed to having spoken loudly all evening to a friend who had done nothing about her hearing difficulty, sort of like how one can feel after a night of cheering for your favorite sports team. Later that night I started to cough a little and then the next night a lot. After coughing for three nights and not getting a lot of sleep, I took a home COVID test that was unmistakably positive. This was not good news, as I had plane tickets to visit my brother in AZ in just three weeks.
I called my doctor to report my positive test and to get a prescription for some cough medicine that would hopefully help me sleep. Not a surprise, she didn’t want me to come in. The coughing lessened, but even after some sleep I felt very fatigued and began to suffer from a headache unlike any headache I had experienced before. Also, neither Tylenol nor Ibuprofen to relieved it. I didn’t have a fever or body aches. I didn’t lose my sense of taste or smell. I didn’t have chest pain or shortness of breath. Just fatigue and that headache.
My Whole Brain Hurts
It took two weeks for me to test negative for COVID. I’d started to get my energy back, but I still had the headache. It had lessened a little in severity, but it was always there. I flew to see my brother and got lots of rest, but when I got home, I still had the headache. I compared notes with my hairdresser, who had that and other long COVID symptoms. I told her it felt like my whole brain hurt, and she said, “Yes! That’s it! I’ve tried to describe it to my husband, but I haven’t had the words.”
I have somewhat chronic sinus infections, about twice a year, but this headache didn’t feel like that—painful pressure in certain places on the face. It didn’t feel like a stress headache, or a headache I can get from lack of sleep. It just felt like my brain hurt. I read later that one possible cause for this type of long COVID headache is that the virus has taken up residence in the small blood vessels leading to the brain where the immune system continues to fight it, with swelling and pain as a result.
“Have you been to medical school?”
I didn’t seek medical help because everything I’d read said that no definitive cause had been discovered for this or other symptoms and therefore no one knew what to do about it. I did report it several months later at my regular yearly check-up with my oncologist (I’m cancer-free). He scoffed at my comparing notes with my hairdresser and the results of my own research. “Have you been to medical school?” He said he knew a good neurologist just across the hall, and he would have her office call me to make an appointment.
Several weeks went by without a call, and the time came for my 6-month checkup with my gerontologist. She agreed that because of my age I should be checked out, but she thought I should have an MRI before seeing the neurologist, who would want me to have one anyway and then come back before giving her opinion. Several weeks later I had the MRI, which came back negative for anything unusual in my brain. Good news, but I still had a headache. My doctor thought I should still see a neurologist, so I called the one recommended by my oncologist. Although this was in early December, I couldn’t get in to see her until April 17 of 2023! I had the thought that If I was seriously sick, I could be dead by then!
The Role of RSV?
A little more than a week before Christmas, I came down with an even scarier cough than I had with COVID. This time I tested negative, but while coughing, I felt like I couldn’t breathe. I could understand why parents were rushing their children to the ER. I went to my local InstaCare. The Dr. there said I likely had RSV. Because I’d had symptoms for 6 days, he pronounced me “not contagious” and said I could lead the choir and see my family on Christmas. However, I could expect to be sick for several weeks, as that was typical for this virus. This time I did have sinus congestion, and so I couldn’t tell the current state of my COVID headache.
After 3 weeks, when I could finally breathe easily again, I realized that my headache was gone!
I have my own, completely non-scientific theory for why I am now headache-free, something I wasn’t sure I would ever be again. It might sound crazy, but since no one else has a better idea (they’re working on it), how about this: When the SARS-CoV-2 (COVID) virus and the RSV virus were cohabitating my body, they duked it out and the RSV antibodies my body produced got rid of both sets of symptoms. Why not?
I canceled my appointment with the neurologist via MyChart. She wanted to know why. When I replied that I no longer had the headache that caused me to make the appointment in the first place, her reply was simply, “I am so glad to hear that the headaches got better.” When you’re the one who had a strange headache for almost a year, that seemed like a bit of an understatement.
If only the millions of other people who are suffering from a variety of long COVID symptoms could be so lucky! They’re working on it.