COVID-19 long-haulers deal with changes in taste, smell months later
Alex Visser, a healthy 26-year-old who lives on the east side of Milwaukee, was diagnosed with COVID-19 in late November 2020.
His symptoms were mild, a sore throat and a cough. But like a lot of COVID-19 patients, he also temporarily lost his senses of taste and smell. Those senses began to come back normally, but then changed.
Months later, his taste is still really off.
“The best way I can describe it, is a lot of things just taste burnt,” he said. “Like someone absolutely just nuked a pizza in the oven, and then drizzled a super foreign, almost alien sauce on it.”
He used to eat eggs almost every day. Now they taste horrible to him. He has a hard time choking down coffee. He’s pretty much eliminated meat, garlic and onions from his diet.
“I didn’t really mind the loss of taste, it’s just when it came back all messed up. That’s what got me,” Visser said. “When it got altered, it messed with my mind. The first two weeks, it was kind of depressing. I’m more used to it now.”
Of more than 32 million Americans who had COVID-19, Visser is among the approximately 85% whose olfactory system was infected, according to Dr. Todd Loehrl, an ear, nose and throat specialist at Froedtert & The Medical College of Wisconsin.
The infection of the olfactory system — the nose and sensory structures that support smelling, which also affects people’s sense of taste — is what causes the loss or change in smell and taste.
Some patients might not even notice the change, while others have gone months or even a full year with a complete change or loss in their taste and smell, according to Loehrl.
Loehrl said that by the end of April 2021, he was seeing two to five patients a day who were seeking smell and taste consulting after having COVID-19.
“Some people come in and say their taste or smell is not as sensitive and robust as it once was, all the way down to patients saying they don’t get anything,” Loehrl said. “It affects people differently. Some people aren’t as bothered by it, and it’s hard to know because they are likely not coming in for treatment. Others are happy they know now why their senses are gone.”
Froedtert has post-COVID-19 care program
Froedtert & the Medical College of Wisconsin opened a post-COVID-19 care program at the end of 2020. The program is for Froedtert or Medical College patients who are experiencing persistent medical symptoms two or more months since their COVID-19 diagnosis.
The program plans to open to non-Froedtert patients in summer.
The loss of smell and taste was a well-known symptom of COVID-19 early on, so Loehrl said he was not surprised to see this many post-COVID-19 patients.
“We’re still pretty early in COVID, and so it’s hard to know when are these folks getting 100% of a return of what they had,” Loehrl said. “Previously, we thought the window for improvement was the first year. We think the window for improvement is more like two years.”
He tries to speed up the process for his patients with a prescribed routine of smelling essential oils. He gives his patients four scents to smell for three months, and then rotates in a new set of smells.
He said there is research that backs this approach, though it is hard to tell how much those oils are helping, vs. the olfactory system healing on its own.
RELATED:Millions of COVID-19 survivors have lost senses of smell and taste. Researchers don’t know if they’ll come back
Loss of smell can be a safety concern
While losing a sense of taste and smell may not sound as horrible as other severe COVID-19 symptoms, some safety issues need to be considered.
People who cannot smell may not realize there is a fire in their home, or a gas leak. Patients also might not notice if they are eating expired food.
Denise Panos, a patient of Loehrl’s who was diagnosed with COVID-19 in November, copes with fears about what she can’t smell.
“I’ve woken up in the middle of the night just to triple check that I turned off the gas range,” Panos said. “I bought a Sharpie, and I label things when I open (them). I don’t want to serve food that’s bad. You have to figure out tools to help you live without your smell.”
Panos said she prided herself on having a keen sense of smell before COVID-19.
“I try to stay positive. I know other people have said it can cause depression. I didn’t get sick or hospitalized, so if I’m left with this, so be it,” Panos said. “But I will tell you, the world seems still without smell.
“You’re just missing one little thing. You can see the flower, feel it, but you can’t smell it,” she said.
Her neurologist referred Panos to Loehrl. She said it was comforting to have a doctor acknowledge that she was dealing with a loss, and that she wasn’t the only one.
She is on the essential oil treatment prescribed by Loehrl, who also prescribed her a steroid nasal drip.
“I’m just trying to make sure I’m safe and hopeful that it will all come back, but I know when I smell my oils and I can tell it is an orange, I get so excited,” Panos said.
Tim Cigelske of Whitefish Bay said his whole family contracted COVID-19 in October.
His wife, Jess, was severely ill and was admitted to the emergency room for a few days. She recovered, but she and her family were left with a loss of taste and smell.
“For two months we didn’t have appetites, like nothing tasted good,” Cigelske said. “You could sense when you were hungry, but nothing seemed appetizing.”
He could also tell a change in his two kids, Xavier, 7, and Clara, 11.
“I don’t think they lost sense of smell to the same degree that we did, but they suddenly lost appetite,” Cigelske said. “My daughter would say nothing tastes good.”
During that time, Cigelske became very interested in food.
“Taste really connects you to the world. It’s that sense that you take for granted,” he said. “It seems like a relatively minor symptom and people would say, ‘Oh, you don’t have taste? That’s nice, you can go on a diet.’ You still get hungry, and you get no pleasure in eating.”
Cigelske said the family diet didn’t change while their lack of taste persisted, but soon after.
“We didn’t really know what was happening,” he said. “I saw a nutritionist. … I told him that nothing really tasted good, and we didn’t know what to do. We were at a loss for our kids.”
The nutritionist suggested Cigelske read work by Dr. Michael Greger, a physician specializing in nutrition who founded NutritionFacts.org. That sent Cigelske “down a rabbit hole about nutrition and cooking.”
Cigelske now prides himself on having dinner ready for his family every night, something that he didn’t make a priority before.
He made a stir fry dish for the first time in his life. He also makes fruit smoothies for his kids for breakfast.
“I think we’re fully recovered now. It’s a weird thing where it’s like, I was taking food for granted, and now, suddenly, I want to cook,” he said. “I didn’t make a conscious decision, but it did feel like a restart.”
Jordyn Noennig covers Wisconsin culture and lifestyle. Follow her on Instagram @JordynTaylor_n. Find her on Twitter @JordynTNoennig. Call her at 262-446-6601 or email [email protected].
