Broken noses

MARY REICHARD, HOST: It’s Thursday, the 24th of March, 2022.

You’re listening to WORLD Radio and we’re glad you’ve joined us today. Good morning, I’m Mary Reichard.

MYRNA BROWN, HOST: And I’m Myrna Brown. First up on The World and Everything in It: a smell test.

If you had COVID-19, particularly early on, chances are you lost your sense of taste and smell. A minor, temporary inconvenience. But for some people, that inconvenient side-effect turned into something much worse. WORLD’s Anna Johansen Brown reports.

MIELING: Eggs, bacon, sausage, oatmeal, cereal, pancakes, waffles, bagels.

ANNA JOHANSEN BROWN: This is Joanna Mieling.

MIELING: Any fruit, or pasta, and most meats, and most pizza.

She’s not making a grocery list. These are the foods she can’t eat. At least, some of them. It’s not an exhaustive list.

MIELING: Coffee, peanut butter, popcorn, and wine.

It started last fall. Around Thanksgiving.

MIELING: I kept smelling this horrible smell when I was doing dishes. And I kind of thought that maybe it was like a rotting sponge, or a rotting dish rag, just that had been old and sitting in the sink. So I kept smelling those, but those smelled fine. And then I figured out that it was the dish soap. And so I had my husband smell it. I was like, Can dish soap go bad? Is this dish soap rotten? And he's like, No, it smells fine to me.

But Mieling kept noticing the smell. Everywhere. And it kept getting worse.

MIELING: It smells and tastes like vomited carnival food, because it's kind of like sickly, but also like sweet.

The smell got stronger and stronger so Mieling finally started doing some research.

MIELING: And I figured out that it has a name: Parosmia.

Post-Covid Parosmia, to be precise. Mieling discovered thousands of other people are suffering from the same condition. They all had Covid, lost their sense of taste and smell … and then about two months later, started smelling something weird. Rotten meat, sulfur, sewage…

Some studies estimate 20 percent of people with Covid go on to develop parosmia. It primarily affects women under the age of 30. But not exclusively.

Ahmad Sedaghat is a doctor at the University of Cincinnati College of Medicine who specializes in nose and sinus problems. He used to get a few parosmia patients here and there. But after Covid hit, the number of cases skyrocketed.

SEDAGHAT: Oh, I couldn't even count. The numbers have been astronomically higher compared to before the pandemic started.

No one is quite sure what causes it. But doctors have a few theories. Sedaghat says parosmia might actually be a part of recovery.

Covid tends to infect cells in the lining of the nose, especially cells that support the function of the olfactory nerves.

SEDAGHAT: And so when these supporting cells get infected with the virus and die, the smell nerves, the olfactory neurons become dysfunctional.

That might be why people with Covid lose their sense of smell. Then, when those nerves start to regrow, they get their wires crossed. They start sending signals to the brain again, but … the wrong signals.

SEDAGHAT: So a great example is that if you were to smell a cup of coffee, there is a combination of odorants that are in those vapors and those combination of odorants then stimulate a combination of smell nerves up at the top of your nose, and then those smell nerves together then signal to the right combination of nerves in your brain that then go to the right memory centers and sort of in that combination triggered the memory for coffee and what it used to smell like and what it smells like. If some of those smell nerves don't wire to the right nerves to go to the right memories, that's where you get distortions in your sense of smell.

That’s one theory. Other doctors think it might be due to hyperinflammation or an overactive nervous system. But few studies have come to any solid conclusions.

Jennifer Knight has had parosmia for 14 months.

KNIGHT: Running water. So for probably six or eight months, I had to take a shower with a nose plug.

When it first started, she’d never heard of the condition and none of her doctors knew what was wrong.

KNIGHT: You know, okay, well, it's probably a sinus infection. So you go to the ENT. Nope, I don't know anything about this. Let me see. So then they've got to look at that. I went to a neurologist. Nope, don't know anything about it. Never heard of it. Let me look it up…

She went to eight different doctors. She tried vitamins, steroids, salines, nasal sprays. None of them worked.

A lot of people thought she was overreacting or just imagining it. She wasn’t.

KNIGHT: So garlic, onions, perfumes, soap products, exhaust fumes, it's all the same smell. There's no way for me to differentiate.

The never-ending barrage of foul odor really started to wear her down.

KNIGHT: You get desperate because it's such an anxiety and depression filled illness.

As she did her own research, Knight ran across a Facebook group for people with parosmia. Right now, it has close to 50,000 members. As she read other people’s posts, Knight realized she had a relatively moderate case. Some people have just five foods they can stomach. They’ve lost weight, been hospitalized, had a feeding tube inserted just to get the nutrition they need to live. The smell is so strong they gag and throw up. They can’t stand the smell of their kids, their husband, or even themselves.

KNIGHT: We've had people, you know, sign into that group and threatened to commit suicide. I mean, it's gotten, It's that serious.

Joanna Mieling says she’s noticed common themes in what people can and can’t eat. But it’s also incredibly random. It happens to vaccinated and unvaccinated alike. People can drink Dr. Pepper, but not Coke. Mieling can’t stand fresh raspberries, but she can eat them frozen. And cucumbers are the most disgusting thing she’s ever tasted.

Dr. Ahmad Sedaghat says all his patients do have one thing in common: The smell is always bad.

SEDAGHAT: No one ever comes in saying that everything smells like cupcakes.

So what’s the solution? Sedaghat prescribes smell training to promote nerve healing.

SEDAGHAT: Usually the regimen that is recommended is four essential oils consisting of one rose, two eucalyptus, three lemon, four cloves, and you smell each of them for 20 seconds per day, twice a day. And and that's sort of like a form of almost physical therapy for for the smell nerves and stimulates the olfactory epithelium.

Smelling those four scents, and actively remembering what they used to smell like, stimulates the brain to rewire itself. Sedaghat says it’s kind of like mind over matter.

SEDAGHAT: But there's actually a very physiologic basis to this because nerves, neurons that activate at the same time like to connect with one another. So if you activate the right combination of smell nerves, and you activate those memory centers in your brain at the same time, there's a greater likelihood that those nerves, those neurons are going to want to reconnect.

But smell training is a painfully slow process without any guarantee of success. It works for some patients, but not all.

Joanna Mieling says she’s just buckled in for the long haul, hoping for improvement, but not expecting it. Jennifer Knight says she’s gotten a tiny bit better just in the last six weeks. She’s going to keep trying things, hoping that someday—eventually—something will click.

Reporting for WORLD, I’m Anna Johansen Brown.

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