March 9, 2021

S2:E1 Brooke | Parosmia I: When Smells are No Longer Safe


We're kicking off Season 2 with a series about parosmia, perhaps the most odd and startling long-hauler symptom to date. Parosmia is dysfunctional smell detection characterized by the inability of the brain to correctly identify an odor's "natural" smell. Instead, the natural odor is usually transformed into an unpleasant aroma, typically a "'burned,' 'rotting,' 'fecal,' or 'chemical' smell".  Pre-pandemic this was a symptom often found in patients undergoing chemotherapy treatment or persons recovering from head trauma. Its current link to coronavirus confounds doctors and scientists as there is no immediate cure.

Brooke is our first guest and she has been struggling with her symptoms for 10 months. It is quite an emotional interview as she breaks down what her day to day life is like living with parosmia. She recounts how she may have gotten it, what she can and cannot consume, and shares resources that have helped her along the way (which are posted below).

AbScent is a UK registered charity supporting people who are experiencing the distressing effects of smell loss. AbScent offers information, support and practical advice for people living with smell disorders. https://abscent.org/ (On March 15th we are releasing an episode with Chrissi Kelly, the founder of AbScent, who will share more about her research and studies into smell disorders.)

The Smell and Taste Association of North America (STANA) advocates for funding for research on smell and taste disorders and collaborates with individuals living with these chemosensory disorders, healthcare professionals, and institutions to provide evidence-based education, resources, and networking opportunities.  https://thestana.org/

The Monell Center for Advancing Discovery in Taste & Smell - their mission is to improve health and well-being by advancing the scientific understanding of taste, smell, and related senses. https://monell.org/

Transcript
Caroline Amos:

Hi, I'm Carolyn Amos.

Raymond McAnally:

And I'm Raymond McAnally.

Caroline Amos:

And we are

Caroline Raymond:

Fatigued (laughter)

Raymond McAnally:

So for our listeners, this episode deals with some medical terminology for symptoms related to the loss of taste and smell. So we're gonna give you a few definitions for phantosma

Caroline Amos:

and parosmia. AKA the ugly stepsisters of Coronavirus (laughter). Parosmia is a term used to describe health conditions that distort your sense of smell. If you have parosmia, you may experience a loss of scent intensity, meaning you can't detect the full range of the sense around you. Sometimes, parosmia causes things you encounter every day to seem like they have a strong, disagreeable odor.

Raymond McAnally:

phantosmia is the medical word used by doctors when a person smells something that is not actually there. Phantosmia is also called a phantom smell or an olfactory hallucination. The smells vary from person to person, but are usually unpleasant, such as burnt toast, metallic or chemical smells.

Caroline Amos:

I feel like there's a "Phantosmia of the Opera" joke to make here (laughter). And I think that's just the joke. Brooke is excellent to see you. Like I was saying before, I can't believe it's been... It has been almost two years since I last saw you. Back when we could go out and have drinks in New York City. Isn't that wild?

Brooke Viegut:

That's so insane. Like, no, it's so insane. (laughter)

Caroline Amos:

It's funny because you put in particular, you have. You've gone through a lot of things since I last saw you.

Brooke Viegut:

Yes. (laughs) To put it mildly. Yes. Here's my 2020. Here's what happened. Okay. I had been working as a contractor with a company for like, about a year and January 2020. I got a contract. I was full time I was leading an educational program. I was developing theater, I was the EA to the site coo with like a really strong trajectory built into my contract. And in March, we opened a London branch of our company. So March 8, we all flew to London.

Raymond McAnally:

Ohh no

Brooke Viegut:

We held a launch event with guests. On March 12. The day Broadway shut down. To my credit, that was a great success. But it was the entire time we woke up right and we all had text from the CEO like come to my hotel room, we need to do triage because they had there had been inklings of like Broadway shutting down and like, like it's happening, like the world is happening. And this is the day of the event. So I'm on event duty, and everyone else is figuring out everything else. And then the 13th, Friday the 13th. (laughs)

Caroline Amos:

Oh that's the day, my grandfather, Friday. the 13th. That's when I buried my grandpa and the pandemic shutdown, and I lost my job. And that was the my first day getting stuck in Florida. Yeah, bad day.

Brooke Viegut:

Bad Day. And then I went back in I helped the EA because they announced the travel ban. And so we had to figure out how to get everybody on our team out of London by Sunday night. Otherwise, they were gonna be stuck there. That got figured out. It was okay, we got out but it was like, it was nuts. And I was I was exhausted and I get jetlag and I wasn't sure if it was jetlag, or what, but I was not feeling my best. So I flew back in on Sunday afternoon, the day before the travel ban was instituted. And I walk off the plane. And like, you know, we didn't no one knew anything. So I'd like use my scarf to cover my face with people were boarding. Someone handed me wipes, I wiped some stuff, but like it's a six hour flight in a petri dish. There's no...

Caroline Amos:

You're gonna get sick even if there's not a pandemic, you know, like that's how it always is on those kinds of flights.

Brooke Viegut:

Right? So I get back, I'm jet lagged as all good out. I'm exhausted. I get home. I crash Monday I wake up, I'm not feeling my best. But again, like every time I travel internationally, I get jetlag and but I just my body felt weird. I'm gonna call it jetlag. But I don't know. The night before I watched Lion King 1.5 for the first time with my roommate.

Caroline Amos:

Oh, excellent I love that one.

Brooke Viegut:

this is important because we like laid out the couch and like got it made it all cozy in a nice movie night and sat next to each other and watched a movie for several hours. And the next morning I had a fever. The day after that he flew to Las Vegas and I was alone. (Music)

Caroline Amos:

So you were alone in New York City. Having Coronavirus. I know what that feels like. And you were there for me in my time of need. Can I ask how long were you by yourself?

Brooke Viegut:

(choking up) Two and a half months. And then my partner came to stay with me after I had gotten better, and I was asymptomatic for like three or four weeks.

Caroline Amos:

I want to hug you so badly right now.

Raymond McAnally:

I know, once you exhibit symptoms, it's not safe for them to come. Yeah.

Brooke Viegut:

Yeah. And it was, it was sorry, I haven't really talked about it. There's a lot of feelings happening right now. But I was I was alone. And I lived between two hospitals and all I was hearing the sirens every hour, and I was sick, and my skin felt like it was on fire and I couldn't feel my hands and my body hurts so bad. And I, I like I and I was still working. Because they shut down our office and I did not want to lose my job. I was alone, listening to sirens every hour on the hour, not knowing what was happening to my body, not knowing how to help myself. And all I could get from 311 was if you can breathe, and you don't have a fever over 100 degrees, stay home. So all I remember, is calling my mother twice a night, like usually around four or five when it would get really bad. And then right before I went to bed, just telling her that I was ready to die. I don't want to die (crying). I'm not ready to die. I don't know what's happening. My poor mother had to sit there and listen to this for four weeks. Not being able to get to me not being able to tell me what to do. or help me there was nothing that we could do. Right? Because I wasn't bad enough to get help! I could breathe, okay. It was anxiety breathing, but I could breathe okay. And my fever never went above 100. Or if it did, it didn't stay there for very long. So by all intents, like for all intents and purposes at this time in a pandemic, I was a "mild case". And there was nothing they could do.

Caroline Amos:

It's - there's anything, anything but mild about it when you consider the circumstances of being alone, of being next to a hospital, hearing sirens constantly. The toll that that's going to take on one's psyche is IS in and of itself a symptom, I mean, symptom of your environment.

Raymond McAnally:

Absolutley, if you were in the hospital exhibiting that symptom, they would give you medication for it.

Caroline Amos:

Yeah, like Hi, here's a Xanax but like you're there by yourself. That's...

Brooke Viegut:

I tried teladoc one medical and 311 Tella Doc, I was on hold for 19 hours.

Raymond McAnally:

What!?

Caroline Amos:

Hang on, like one nine, 19 hours!?

Brooke Viegut:

Yes.

Raymond McAnally:

Who did they think they are unemployment?

Brooke Viegut:

Right!? (Laughter) I started it when evening. And then it wasn't until the next evening at 7pm when they said that they had somebody who was ready to see me when medical was about 10 hours. And then three well one I waited for three or four hours to speak to somebody for 15 minutes who said if it's not if you don't have a fever, and you can breathe, there's nothing we can do. And that's all I got.

Raymond McAnally:

Well, it sounds like the anxiety was bad enough.

Brooke Viegut:

Yeah.

Raymond McAnally:

And I assume, I assume with the with the lack of fever, though you were still exhibiting body aches and chills and those symptoms?

Brooke Viegut:

Oh, yeah!

Raymond McAnally:

That was a confusing thing for me, I know because I had chills. A little bit of body ache, but I never I never ran a fever at all.

Brooke Viegut:

Wow.

Caroline Amos:

Must be nice. (laughter)

Brooke Viegut:

Well it's like, I'm a tall person ,right.?I'm almost six feet.

Caroline Amos:

Must be nice! (Laughter)

Brooke Viegut:

So sassie today!

Raymond McAnally:

Why can't we do this in person standing up? That would be great.

Caroline Amos:

I know, for reference for our viewers. For viewers? Our listeners. Caroline is five feet almost exactly. Raymond is...

Raymond McAnally:

I'm six foot.

Caroline Amos:

Raymond is 10 feet tall and Brooke is 10 feet tall. And we're fine over here. We're fine.

Raymond McAnally:

She is little but she is fierce (music)

Brooke Viegut:

It was like day five or day six when I realized... I have no idea it happened before, but it was at that point when I went to like, the one thing I kept trying to do for myself as at least I can make a smoothie and get something good in my body, because all I want is like crap. And that's not going to help me get better. Right?

Caroline Amos:

Yeah.

Brooke Viegut:

And so I went and made a smoothie, and I drank it. And it was just like sensation. But no taste or feeling. And I panicked, and I called my mom, I was like, what is happening to me!?

Raymond McAnally:

That's a great description of it, too. It's almost like, to experience texture without any taste or smell to it is so strange, so strange, sensation is a great word for it!

Brooke Viegut:

Thanks. And so I lost my smell taste. And I like I could, I got to a point where I could get sweet and I could get salty. So I would have ice cream and chips. I don't know what flavor anything was, but they were at least pleasing textures, enough so that I was getting calories in my body. And I could and then we got to a point where I like had Sour Patch Kids, and they didn't have taste, but like, saliva flooded my mouth the way sour does.

Caroline Amos:

Oh - Whoooaa

Brooke Viegut:

And it was, here's (laughing) here's something about what happened to me. Everything came back for like, a couple weeks at a very mild level. (breathing) Oh my god, such a sob story. So this was May. And in May, mid May, my roommates and I decided that we could not resign our lease. So at the end of May, I was going to be effectively displaced for the foreseeable future. And I had held on at work, I'd made it through a couple rounds of furloughs, and then I was furloughed. And then at the end of April, beginning of May, I was laid off -

Raymond McAnally:

Also from the company that you took the trip that -

Brooke Viegut:

That got me COVID. And it was my dream job

Raymond McAnally:

Whoa!

Brooke Viegut:

It was, so... parosmia - welcome to the story. for where I'm at in my career. I went through and packed up our entire three bedroom apartment. Myself and my partner. And I had no idea where I was going to go. At that point to, I was lucky enough that my partner is so kind and wonderful. And all of his roommates had left the city for the foreseeable future. So I went and I moved within with him for two months. Because I didn't know what my next step was going to be. I didn't know what I was going to do. We got to his building. And the building. It smelled like nothing I've ever smelled in my life. It smelled rank! (Music) My experience with this is different than a lot of people's experience with this. But it's also very, very similar to a lot of people's experience with this. Little bit of context and background because this is something I've been dealing with for almost a year at this point. Most people who experienced this phenomenon, it is a common thing that happens to people as after chemo, they start to experience like distorted sense of smell. So it's not a new thing in the world of medicine, which is exciting. Most people from what I can gather and I'm in like social support groups on Facebook, and helping with some studies the UK in here and you kind of fall into one of two categories. The sickly sweet chemical odor, permeating everything smell. And the rotten meat that was burned in an oven and left out in the sun for too long smell.

Raymond McAnally:

Where would you put the - Oh, sorry - where would you put the building? That you're

Brooke Viegut:

Rotten.

Caroline Raymond:

Wow.

Brooke Viegut:

my my experience has been primarily with a rotten smell. It was only two months ago three months ago that I also started getting the chemical smell. So I now am experiencing smell distortion on both levels of the spectrum.

Raymond McAnally:

Is that any evidence that smell is returning or that's just a third version of this?

Brooke Viegut:

is a good thing that I keep telling myself because this is like it's a daily thing, right? We were just talking about what we're going to do for dinner. When we're finished with our various things. And we talked about ordering Chipotle. When we order Chipotle, I have to ask him not to order specific things because it affects my senses.

Raymond McAnally:

And for our audience who might not have heard of this, can someone spell the the term?

Brooke Viegut:

Oh, yeah. So you lose yourself completely. I got this! (Laughter) You lose yourself competing completely. You have anosmia - A N O S M I A. That's just nothing. Right. And then there are two other phenomenons that have been happening was about they're estimating about 10 to 20% of the percentage of people that loses their smell and has a long experience with it. You have parosmia, I honestly don't know if I'm pronouncing it right, because I second guess it. But you have marosmia P A R O S M I A, or phantosmia, P H A N T O S M I A. Parosmia is a distortion of a smell that exists. Phantosmia is a distorted smell that does not exist. But you smell it anyway.

Raymond McAnally:

So you experience an altered taste to foods? And is it also just smells in the air? Like you said the building smelled different to you?

Brooke Viegut:

So, yeah, it's nice to have a word for it. I didn't have a word for it for the first like five months I was experiencing this. I just call it.

Raymond McAnally:

Alright. So how long have you been dealing with this?

Brooke Viegut:

Since June, it is still going on? And it is January almost February.

Raymond McAnally:

So what seven months? almost eight months?

Brooke Viegut:

Almost, nine month? Yeah. This has been very traumatic and very hard to deal with. Of course. But also because when you know that something should be one way and it's not and it's just repulsive and revolting. There is no greater frustration.

Raymond McAnally:

Because you have what? You have a memory of what things used to taste like versus what they now taste like?

Brooke Viegut:

I used to (emotional)

Raymond McAnally:

Yeah...

Brooke Viegut:

I don't know if I do anymore.

Caroline Amos:

Oh my god...

Brooke Viegut:

It's been so long, it just kind of is how things are (tears). I experienced smell distortion in a level of that. That is some people have called it like a I like to call it a rotten burning food that was left in the sun for too long. And maybe also put dog poop on it. So other symbols, it's great. Other people have likened, like the bad smell the side of the bad smell to like, sulfur, or rotten eggs, or fecal matter, or meat that's gone bad. rotten flesh, or like a flesh wound that was infected. That's kind of one and then the other side is like, think of like the most chemically sickly, sweet thing you can think of and then turn that up by like 50. And that's the other side.

Caroline Amos:

And it's a little gasoline like too. It's got like, gasoline sort of taste and smell to it and a little bit of sulfur because that's what I had.

Brooke Viegut:

mmhmm

Caroline Amos:

Yeah, I didn't have the rotten spectrum. But I had the like, chemically.

Raymond McAnally:

Yeah, I had that too. It tastes like ammonia. Like everything. It had a sterile.

Brooke Viegut:

Yeah.

Caroline Amos:

Yeah. So you walk into this building and it smells rotten. How often were you encountering things that - Is it like a permanent, always constant state of rotten smell? Or is it triggered by specific things?

Brooke Viegut:

So for the first couple months, it was pretty permanent. And I think that also had a lot to do with my living situation. Because what I've figured out is if I walk by a restaurant or walk by an apartment that's been cooking, it kind of just smells like that. Like the bodega in my corner I always cross the street because when I can't like walk by it because it's gross.

Raymond McAnally:

And this is true of no matter what's being cooked just the blanket smell?

Brooke Viegut:

For the most part anything with spices what I found my big like trigger foods are our red meat, garlic, onion. Most vegetables, sometimes fruit. Fruit does a sickly sweet one though it doesn't do the gross one. And then there's like a slew of spices that like if it's like anything that sort of like, Latin spice is usually a no go that has changed though. But it's usually a no go.

Raymond McAnally:

What do you do? You need like a vegan Irish pub that only serves raw potatoes. (laughs)

Brooke Viegut:

I literally had a pretty plain chicken and potatoes for lunch. I mean, I don't eat a lot of meat anyway, but I lost weight, because I wasn't really up to eating. And then, so in the midst of my like, desperate, transient Nomad life for six months, I moved home with my family. And when I was there, for some reason, like the air quality was different. And I started eating again, which was good. But there were still some things that I couldn't eat and a lot of stuff like just didn't taste right. And then I came back to the city. And my diet was basically like, bread. Like, I've eaten a lot of pastry, and I gained weight. Because whenever I like don't feel like eating. I can usually do something sweet. So I'll do like bread and butter. Or a scone or a pastry. And it's just bread like, and I feel terrible. Like I'm not eating a good solid set of nutrients. Oh, eggs. That's another one. So if you can't do eggs, I do eggs. I eat them, but they're not good. And this is what my life is. The crazy thing is it's like I tell this to people, and they're like, wait, you can't have onion? I'm like, No, because it smells like the world is ending. And it's like if my roommates cook with onion and garlic, I can't go in the kitchen for hours, or I'll go in with a mask on.

Caroline Amos:

Yeah, but a mask doesn't a mask doesn't hide scent.

Brooke Viegut:

It helps a little bit, but not nearly enough. Yeah. And it's like so I figured out like the places that I can order foods or cheese is one thing that a lot of people can do. I don't eat dairy. So very resorted to like the phase three situation. There are a lot of people that are like crackers and cheese that that's their life. But coffees, not great chocolates not great. Like there's a whole slew of things that are just kind of on the No Fly List. I don't know if I actually have taste right now. Because it all just smells so bad that that's what takes over. So yeah, I don't know if it tastes bad.

Raymond McAnally:

They're so intertwined too.

Brooke Viegut:

Yeah, it's an it's like things that are cooked, especially things that are cooked in oil. The greatest advice that I got from ABSCENT, which is a UK based organization that focuses on smell loss, and it's been really working hard to help people like me figure out what's going on and figure out ways to just manage it because no one can fix it is don't eat hot food. Be really, because when things are cold there you don't smell as much.

Raymond McAnally:

It's the cooked factor that the issue?

Brooke Viegut:

The smell that comes with heat.

Caroline Amos:

Heat heightened smell.

Brooke Viegut:

Yeah.

Caroline Amos:

Very similar to when you walk past a gigantic

Raymond McAnally:

I will say going back to you mentioning the pile of garbage on a Manhattan street on a hot summer day. We all know. organization Abscent. Right? For a second there I thought you said, the thing that's helped me with absinth (laughs). Oh, I thought you were just pounding hard alcohol. (laughs)

Caroline Amos:

Why not? Do whatever you want to do to get by?

Raymond McAnally:

If you don't like the taste of it, now is the time.

Brooke Viegut:

I mean, truly, no, it's Abscent, A B S C E N T. So ab and then scent, like smell. And there's also an organization that was started in the US because of this that's like slowly building up their, their stuff that's partnering with that called the STANA, which is the Smell And Taste Association of North America solid taste association of North America. And they're pretty new. And so I went and I filled out forms to help with research studies and things like that for them as well. Everything I've seen in my support groups and things like that no one knows what's happening, and it's not worth like no one has answers and no one's really been able to get help. It's just time. It just takes time. Can I share one more thing that I haven't mentioned yet? Yeah, that may not be or might be worth inserting somewhere.

Caroline Amos:

I can play Yeah.

Brooke Viegut:

Along with the whole like, fight or flight mental situation. COVID is lonely, right? COVID-19 is lonely.

Caroline Amos:

Oh yeah, girl!

Brooke Viegut:

Pandemics are lonely. And when you have your people who you're able to be around, you try and seek comfort in them as much as possible. I have a lot of anxiety spending time with my partner because I don't know if I have B.O., I can't smell it. And he doesn't care. I know he doesn't care and it has nothing like he's like, we have a patch now that he will tell me if I need to go put on deodorant? Because I don't know.

Raymond McAnally:

Yeah

Brooke Viegut:

But the worst thing is that if he's had any of my bad foods within 24 hours of seeing me, I can't kiss him. Because it's gross. And it makes me feel gross and nauseous. And like, we can cuddle, but I have to, like, lay on his chest or turn away. Because I can't have his breath. And he has great oral hygiene. It's not that, it's consumed. And it's, it's an extra layer of crap on top of everything else that I don't get to have comfortable, like, intimate time just cuddling with my partner in the same way as everybody else. Because I had COVID. And because it has persisted, and it's, it has put a strain on our relationship. And because we can't - you're missing that level of physical connection that you have with your significant other with people, right?

Raymond McAnally:

And right now that's more important than ever.

Brooke Viegut:

Yeah, and we don't live together. So like I have a person maybe once or twice a week when we're careful and able to spend time together, you know. And that person depending on the day is almost repulsive to me.

Caroline Amos:

interesting when you mentioned you and you're also talking about how he's he's like, there is no smell in this apartment. And you were like, I smell something. It almost sounds as if you live in a haunted house. And you know that there are ghosts but no one else is seeing them.

Brooke Viegut:

Yeah, yeah, you

Raymond McAnally:

You smell dead people! (laughs)

Brooke Viegut:

The good thing is, if we want to end this on a high note. Things are coming back. It's been a long journey and I still have like issues with most things. But I before we got on this call to record I picked up a candle and I was like, Brian to smell like a flower!? Please tell me the smells like a flower. Please tell me it's not floral. He was like it smells floral and I was like "Oh thank god".

Caroline Raymond:

That's great!

Brooke Viegut:

I hadn't been able to smell that candle. Like it's the worst thing ever just like my comfort things my lighting candles, my diffuser, my other they're all related. My perfumes those terrible. That used to be one of my favorite things.

Caroline Amos:

That is a huge - as a girl that wears perfume every day - That's a huge bummer. Because you wear perfume for you!

Brooke Viegut:

Yeah, coming back, and things are not as bad as they used to be. And I will take that any day. I can walk past the bodega on the corner now. Not every time but sometimes I can. You know, it's like,

Raymond McAnally:

Just because you can doesn't mean you should (laughs).

Brooke Viegut:

It's the smell that comes out of it. I lived subway for a few months. And that was just like, whoa!

Caroline Amos:

Oh, the subway smells always like uhhhhh whether you have parosmia or not.

Raymond McAnally:

There goes that sponsorship. (laughs)

Brooke Viegut:

I say that because that's like, everyone knows what a subway smells like, right? Anyone who's ever been in a subway is like, that is a distinct smell. And it was like, for me it wasn't it wasn't that and it probably still isn't that but it's it's like not as bad as it used to be, you know. And so I don't have a plan, but things aren't as bad as they used to be. And so I'm taking that as a sign that this is not forever. Just like this pandemic is not forever, as long as we all do our part. And so I'm just doing what I can to bring myself joy and find things I can eat that makes me happy because there aren't that many of them. So I have to take those and cherish those.

Caroline Amos:

Hey this is Caroline!

Raymond McAnally:

And Raymond.

Caroline Amos:

Thank you so much for listening to Fatigued.

Raymond McAnally:

From patients to paramedics, long haulers to lessons learned. Sure, it's the same virus but these are very different stories.

Caroline Amos:

If you have a question or a story Like us to address on an episode please email us at fatiguedpodcast@gmail.com. That's fatigued podcast at gmail dot com.

Raymond McAnally:

And don't forget to check us out on Facebook, Instagram, Twitter

Caroline Amos:

Clubhouse

Raymond McAnally:

Right!? Clubhouse What is that?

Caroline Amos:

I don't even know. But whatever it is, we're here to offer genuine conversations so we can humanize the issues surrounding COVID and the pandemic. These stories deserve the space to be remembered and we relish the opportunity for connection in this isolated time.

Raymond McAnally:

Perhaps you will to

Caroline Amos:

Stay positive.

Raymond McAnally:

Test negative.

Caroline Amos:

And thanks for listening!

Raymond McAnally:

Bye