Long Covid Questions - with Neuropathologist Dr Mayen Briggs

In this final episode of season 1 - we get answers to some of the questions we've been collecting over the series from neuropathologist Dr Mayen Briggs.
Questions like: Why do we talk so much nonsense? Why are loud noises so unbearable? Why does Katya feel like she's floating up and down in her bed at night? (that one is less fun than it sounds)

We want to hear about your experiences! What do you do with your bounded energy?
Email: boundedenergy@gmail.com
Twitter/Instagram: boundedenergy
Transcripts available on our website: www.boundedenergy.co.uk

Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

Katya  00:02

And so I was gonna propose that we just take like a clean break, Hannah. And then we catch up in like, say two months.

Hannah  00:10

Two months would be good. We've got that sounds reasonable. Yeah.

Katya  00:16

And we obviously can't speak to each other like during that time, Hannah. It'll be like ... why are you calling me?

Hannah  00:24

When you say complete break, it just means an excuse to cut Hannah from life for a while. I've talked to her for way too long.

Katya  00:33

It got weird. I remember, we had a whatsapp call during the recording time of this podcast. And I was like, it took me a while to be okay with the fact that it wasn't all being recorded. Like there was a while when I was listening to our conversation, and in my head being like, oh, I should have recorded that. We should have recorded that. Yeah, it took me a while before I couldjust like enjoy the conversation. It was like, Well, if it's not recorded, does it really matter? 

Hannah  01:01

Oh that's shit (both laugh)

Katya  01:02

All right, buddy. All right. Look, I'll be in touch. 

Hannah  01:06

Yeah. 

Katya  01:08

Before before April, before the end of April. (both laugh)

Jingle  01:13

 I'm having a good day/minute/hour/week. What to do & how to be, with the beans given to me, me and my bounded energy

Hannah  01:30

Medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  01:41

Hello, Katya here and welcome back to the final episode of the first season of the Bounded Energy podcast. Throughout the season, Hannah and I have been collecting questions. And so it made sense to finish by getting some of them answered. Questions like What is brain fog? Why do I sometimes feel dizzy or struggle to walk in straight lines?  What is the polyvagal theory? 

Katya  02:06

So in the first part of this episode, we asked these questions to Dr. Mayen Briggs. Dr. Mayen Briggs studied medicine at the University of Edinburgh. She then completed a masters in neuroscience at King's College London, before getting her PhD in neuroscience specializing in neurodegeneration at Cambridge University. She now works at Cambridge University Hospital as a neuropathologist. And she also happens to be my cousin, which is why we laugh so easily in this episode. Dr. Mayen Briggs is a very modest person. And naturally, she suggested a bunch of other doctors who work closer to too long COVID to speak to us in her stead. But this podcast has always been about cheering up fellow sufferers. And it was important to me to have a conversation that was funny and warm, while also being really interesting and useful. And where Hannah and I are comfortable putting our hands up and saying I'm sorry, I just don't know what this means. Which is exactly what this conversation was. 

Katya  03:01

In the second part, Hannah and I talk a little about why we're taking a break. And we reflect on what this first season has brought to us. But for now, I bring you our fascinating conversation with Dr. Myers Briggs. I hope you got as much from it as we did. 

Katya  03:15

Shall I introduce you or do you guys want to introduce yourselves to each other. I should also just say Mayen This is a heavily edited podcast. So if you say anything that you don't like, we'll remove it.

Hannah  03:28

We say all sorts of crap on this podcast that we just come out after.  (both laugh) Nice to meet you Mayen. My name is Hannah. I'm a speech and language therapist. My work is with people with acquired communication and swallowing impairments, often due to something neurological. So I've got a little bit more, I've got kind of a basic understanding of  the central nervous system and the peripheral nervous system, but  it's very basic. It's by no means like, in super in depth, but I just I might be more familiar with terms than Katya might be. (Katya laughs) But I think we should probably assume that all of our audiences at Katya's level. 

Katya  04:20

Thank you Hannah

Hannah  04:21

 Because like it might, I might like be nodding along and being like, oh, yeah, because like, I kind of know those terms already. But actually Katyait's good to have you because you'll be like, You guys are talking about a word that actually we need a definition for, for the audience. So yeah, yeah, 

Katya  04:39

We were saying before, just so it doesn't seem like Hannah is being really mean. We were saying knowledge our levels of science, because I just did GCSE biology and stopped. So Mayen, wanna introduce yourself. Shall I call you, Mayen or Dr. Briggs? I will do a formal introduction.

Mayen  04:56

Up  to you -I don't think that you need to - you can just call me Mayen

Katya  05:01

Mayen/Dr Briggs. Who are you?

Mayen  05:05

I'm Mayen. I'm a neuro pathologist. But I started out as a neurologist. And I worked as a neurologist for quite a while. And then when I started my PhD, which was in neurodegeneration and in dementia, I did a lot of work with the Cambridge brain bank. And as part of that work, I kind of realized that actually, what I really loved about neurology was the neuro pathology of it. So kind of how the disorders manifest themselves and the actual science behind it. And so when I came off my PhD, I've been swapped into neuropathology. So the bulk of my work is brain tumors. And so anything that a surgeon takes out be it the brain, muscle or peripheral nerve, I'll look at that under the microscope and tell them what it is. And then I also do some post mortem work, where I look at just the brain. But I also do general post mortem work as well, when I'll do the whole post mortem.

Hannah  06:05

Wow, sounds so fascinating. 

Katya  06:09

Yeah, I feel like we've had a lot of conversations, Mayen around your studies that are what is this? What does this mean? What does this mean? but I can't remember... what is neuro pathology?

Mayen  06:19

it's looking down the microscope and looking at anything that a surgeon resects from inside the brain or anything of the nervous system, I look at it down the microscope and try and work out what it is. And occasionally, we'll do things like during the actual surgery, so if the surgeon goes into the brain, and he's not sure what he or she is looking at, and then they want a pathologist to then look at them or down the microscope and say, This is what this is. And this will guide how they manage it, because some sorts of tumors, you don't actually surgically resect they need chemotherapy when they stop, whereas others, it's really important to try and resect as much as possible. So a lot of my work will be actually telling the surgeon, this is what this is. And that will guide how they manage them at that time. And then afterwards, we'll then do sort of further studies looking at the tumor to try and then sort of classify exactly what it is, and what the best treatment would be.

Katya  07:15

You have to do that live like in surgery? So

Mayen  07:19

yeah, so that bit we do that live. So we'll do that while they're in surgery and give them a sense of what it is, and then after the surgery, we'll then do much more detailed analysis. So looking at maybe some of the genetic changes as well in the tumor, which might mean that it's targetable, or that you can use certain types of drugs to target those genetic changes.

Katya  07:42

That literally sounds like the long COVID brain fog nightmare. 

Mayen  07:48

I can imagine 

Katya  07:50

to have to make a decision or figure something out on the spot. Yeah, that's quite amazing, Mayen.

Hannah  07:59

It's like a lot of like, yeah, analysis and decision making under pressure in a short period of time with people waiting for your answer...

Katya  08:08

people waiting with their heads open while someone looks at your tumour!

Hannah  08:13

Wow.

Mayen  08:15

So I don't know, I don't know, huge amount on long COVID. And to be honest, probably no one really does know, in terms of its, its there just isn't enough data on it. So I can try and help to sort of explain a lot of the, the neuroscience in terms of some of the theories, but obviously my clinical practice, I wouldn't really see individuals with long COVID. I have seen nerve biopsies and muscle biopsies, from individuals with COVID. But I wouldn't say it's a big part of my sort of everyday practice.

Katya  08:50

Okay, yeah, I think I think it's nice to have, because of our connection, there's this safe space.  I think I've had questions are quite, I was gonna say they're obvious - the questions that everyone seems to have, so I just, yeah, so I guess just thank you for agreeing to come on and, and share what you know, around these.

Mayen  09:13

I hope I can answer them sufficiently. Obviously, some of them I just won't necessarily be able to answer or don't know enough about. But I will try and answer what I can.

Katya  09:25

Yeah. Shall we go for the first one then?

Hannah  09:29

Cool. Yeah, I think so. The first question is quite a broad one, which is what is brain fog? And why do we sometimes forget our words and mix up our words so much more now as a result of long COVID?

Mayen  09:45

Yeah. So brain fog. Obviously, it's not an official medical term, but it's, it's a way of describing this constellation of these persistent symptoms, sort of difficulty focusing, confusion, and sluggish thoughts, forgetfulness, and this general sense of fatigue. And it's really thought to be because of a part of our brain that is responsible for planning and decision making, and that's at the front of the brain. And that's what we call the prefrontal cortex. And the connections here can be quite sensitive to trauma, to infection. So any structural or functional damage can lead to this constellation of symptoms that we describe as brain fog. And it is frequently described in association with long COVID. And I sort of did a little bit of reading in terms of what studies have been done. And why do we think, particularly with long COVID at the front, that prefrontal cortex is particularly vulnerable. And it it found that when they looked at the volume of the prefrontal cortex in individuals with COVID, a study done last year, they saw a 2% decline in the volume of the brain, here compared to controls who hadn't had COVID, it's obviously something seems to be going on there. And if you then have damaged that part of the brain, it's much harder to complete complex tasks, because decision and planning is affected. But also your language center is also at the front of the brain. And so if you're having problems there, you're going to have problems with words, and some word finding difficulty. Generally speaking, these sorts of structural changes can get better over time. But we just don't have the data at the moment to sort of understand what the natural progression is in long COVID.

Hannah  11:37

Right,

Katya  11:38

I had no idea that there was physical damage to the brain, like the I was gonna say, I thought it was all in my mind, but it's in your brain and your brain is a real thing. 

Mayen  11:56

Yeah. And I think it's not fully understood. Whether it's so it's, it could be a number of mechanisms. So one, is it that the virus is actually getting into the brain and damaging the brain itself directly. And you have the olfactory bulbs, which sort of connect to your nose, and that's an entry point for the virus and travel into the brain? Or is it that actually, it's that inflammatory response, when your body is trying to defeat the virus, and we know that inflammatory response is damaging, and it damages other parts of the body? So is it actually that inflammation that's damaging  rather than the virus itself. And then the other thing is that we know that the virus can also cause damage to little blood vessels. And so is it actually that it's damaging some of the blood supply to the brain, because we are seeing, certainly in, in patients with COVID, there's a much higher risk of having things like stroke, and those are sort of damaging the big blood vessels, or causing clots that block the big blood vessels, but we're also seeing damage to the smaller blood vessels. So you're not going to necessarily have a big stroke, but it might be causing little bits of damage or interrupting the blood supply by damaging the small blood vessels. And so is that actually the the underlying mechanism that's causing these problems? 

Hannah  13:14

Right, with the So how have they kind of been able to see some of these potential changes do they show up on an MRI.

Mayen  13:22

So some of the vascular changes will show up in an MRI, but some of them will be too subtle to necessarily be picked up on imaging. And so the changes that we're seeing, certainly, in terms of the volume, a lot of that is from the UK Biobank, and I think they had about  maybe 400 People with COVID, and then sort of compared it sort of matched controls, and looked and measured the volume of that part of the brain. So I think a lot of it's just been, yeah, just repeated imaging and just trying to collect as much information as possible.

Katya  13:53

If you can't see something on an MRI,  how do they image? How do they know this?

Mayen  13:59

So in some cases, it's generally because we're looking under the microscope. So when we look at some of the peripheral nerves, for example, we're seeing damage to the little blood vessels that supply it. And so you can then extrapolate and say, well, actually, this could be happening elsewhere. And then sometimes you do see it on on imaging, but sometimes you don't. So a lot of it is just hypothesis. We don't really know.

Hannah  14:22

That's fascinating. I had an MRI scan of my brain and they it they said it was completely normal. So as in it looked completely normal. So then, um, that's just makes me think like, okay, so yeah, an MRI isn't necessarily going to catch everything, but could explain why I have these symptoms of brain fog, but it's not going to. Yeah, an MRI isn't going to necessarily like, give me the answers as to why it's happening.

Mayen  14:51

No. And the other thing to say is that we talk about sort of functional problems and structural problems. So structural problems are things that we can see. And we can say, Well, there's a big thing here or there's clearly damage on your scan. But in terms of how something is functioning is very hard to measure, we don't necessarily have a way of identifying if something isn't functioning as well as it should be. So how can I say that this nerve is communicating with this nerve badly? It's not that that that necessarily that your brain is completely normal when we talk about a functional problem. It's just that we currently don't have the tools or the technology to assess how something is functioning, or to identify what the actual cause is. So we sort of talked about structural neurological problems and functional ones where it's more about function. And I suppose if you think of it a bit like software and hardware with a computer, so if the hardware is damaged, you can clearly see your computer's broken, but if the software's damage, sometimes it can be very hard to understand why is my computer just being slow? Because it's a software problem?

Hannah  15:57

Right? Okay. That's really helpful. Yeah, kind of like, I'm trying to, like, interpret this into an image that like I could understand, but it's like, I guess if you could say like, Well, maybe say like, the nerve itself, like, structurally, the nerve is there and looking fine. But it could, it could still not be carrying messages from one place to another. Well, even

Mayen  16:22

Yeah so it's like with the internet, it's going a bit sluggish. Sometimes your screen is freezing. But I can't tell you exactly why that internet isn't working well, my computer looks fine. line looks fine. But I don't know why it's moving slowly.

Hannah  16:35

Yeah, yeah. Oh, that's interesting.

Katya  16:41

So one of I guess I have two things I want to, I want to say or ask the first is, you mentioned damage to the language center. I find that really interesting. Because I have always been good with words. Spelling was never difficult. I wouldn't. I was a school teacher I had a lot of kids with what's it called? Dyslexia, and I could never empathize. I can never think how could you confuse homonyms and antonyms. But now, I mingle words in the same semantic field, the level of madness that is, like, I'll say, I'm feeling good, when I mean, bad. And with spelling, the witches get switched, there and their I get switched by, but I also mix languages. So for example, I typed the other day, that's so shocking, beginning with the French choqu-ing it's that level of confusion, I just wonder if have you heard people experiencing that level of mixing of words?

Mayen  17:47

Well, because I because I don't see patients with long COVID. It's not something that I am necessarily very familiar with, certainly, in people who've had traumatic injuries that have affected the front of the brain. So when I was practicing, then certainly you would see that yes, no, any damage to that part of the brain can affect production of language.

Katya  18:10

And it's nice to hear this because I feel like I have had this concern lately that I've been getting less clever. And it's been kind of affecting confidence. So hearing that actually, this could be the result of a physical trauma is reassuring. And something I wanted to ask is I get worse over time. So in the morning, my language will be better my brain fog is less. Do you know why? Over time, it might lessen,

Mayen  18:39

no not particularly other than you're getting tired. And when you get tired, generally things don't function as well. And your executive planning and decision making will get progressively worse. So the only thing I can think of is you're just getting tired.

Katya  18:54

Yeah. And like at the beginning, it was bad. So by the end, it's like really bad?

Hannah  18:58

Yeah. That brings us on nicely actually, to our next question, which kind of I'm just wondering if maybe this has got similar underlying answers really Katya and I sometimes share with each other the strange bodily sort of sensations that we get. So Katya, you said you feel like your body is bonded? What a

Katya  19:22

Yeah I have weird thing at nighttime and I lie in bed. I feel like I'm moving up and down but like, vertical, it's very trippy. Yeah. Yeah.

Hannah  19:33

I sometimes get little shooting or tingling pains. Like sometimes my leg will randomly kick up and both of us have had kind of dizziness. I know quite a lot. People talk about dizziness. Me and Katya both had that feeling where we're trying to walk in one way. But we're veering off a bit to one side. Basically, we're just we've just kind of noticed this kind of odd collection of weird sensations that we get. What do you have any kind of insight into what might be going on?

Mayen  20:02

Yeah, so if we start with the balance one, first, I think there are two because they're sort of different things going on. And like I said, a lot of it is hypothesis, and we don't necessarily know. But if we think about how we control our balance, so it's something known as the vestibular system. And that's made up of what's centrally, so within the brain, particularly within the brainstem. And then you have the peripheral nerve, that then sort of the nerve that goes from the brainstem, that that leads to your ear itself. And then inside your inner ear, you have all these canals, and all of that work together to then control your balance. And they also communicate with your eye movements. So things like when you tilt your head, it will rotate your eyes in the opposite direction. So that you're still focused on the same thing, otherwise, your eyes would move every time your head moved, and you would get very, very dizzy. So everything has to sort of communicate with each other. And everything's very fine tuned. So balance is quite a complicated thing of everything having to work together. And even your body needs to basically say where you are in space. So there's a lot of things going on that are then communicating. 

Mayen  21:11

And but the main thing is sort of this connection between your ear, and then your brain. And that's really key for balance. And actually, when and there was an I looked around this in terms of other people that have had this problem, and in particular with COVID. And they found that about ... that they think that the virus could actually cause direct damage to the inner ear. And that's then going to throw your balance off completely. But it could also cause problems within the brain itself. And in about 54% of people who had this symptom who had COVID, they found that the problem was not actually damage to the ear from the virus, but was probably damaged within the brain, either from the virus or from inflammation and particular in the brainstem. And so if you have damage to any bit along that pathway, you're going to get dizzy. And you're also going to feel like you're moving when you're completely stationary, because it's just not communicating properly, or functioning very well. And so as yes, you get this illusion of movement, and so that's what they think is going on is that the virus is either directly damaging the inner ear, or it's causing inflammation that's directing bits of the brain that control your balance. And that's why you get the dizziness. Does that make sense?

Hannah  22:26

Yeah, that's making sense to me. But Katya are you following?

Katya  22:30

No, I'm following it. I feel kind of. I don't know why I find this whole thing mind blowing, because, because my experience of long COVID has felt like I'm going mad. Because the sensations are so bizarre. And they don't, to me, at least before this conversation. They didn't seem to relate to each other at all. Yeah, how can I feel like I'm floating in bed? Not steady, not walking straight down the road. So yeah, I think it's fascinating. I guess it's, yeah, there's no way of knowing really is there if it's in the brain or in the ear  per person 

Mayen  23:07

you can, so they can identify whether the dizziness is coming from a problem that's central, so within the brain, or peripheral, so within the air, and so that they can do studies to try and work out where the problem is arising. What is directly causing the problem can be difficult to identify. But you can try and identify where the problem is. And so I think they're showing that COVID is damaging the way things function. But in terms of the actual mechanism as to how it's causing that damage is what we don't really understand.

Katya  23:42

That feels like the question, doesn't it? It will be so interesting to know how, how can a virus that you breathe in, damage your ear? That's probably a very basic question, but I just feel so I feel so baffled by that.

Mayen  24:00

Well, as I suppose it just enters the we think it probably does directly into the brain, but then a lot of damage could also just be the inflammatory response. Yeah, from your body trying to fight the virus, then causing damage elsewhere. And we certainly saw that with with the lungs that actually a lot of people that were dying, wasn't the damage from the virus, but it was their immune system trying to fight the virus going a bit crazy and basically damaging everything at the same time. And so it might be that actually it's damaging other parts of the body.

Katya  24:33

That's really interesting. Yeah. And

Mayen  24:36

Oh and your tingling. 

Hannah  24:38

Yes. Yeah. 

Mayen  24:40

So So actually, this week, I have seen and looked under the microscope at nerves in patients with COVID. And actually there is evidence that it does cause some damage to your peripheral nerves. And again, it's this sense of either it's the virus directly damaging the nerve or or it could be that it's causing inflammation in those tiny little blood vessels that supply the nerve. And so what we're then seeing is actually it's interrupting the blood supply to the bits of nerve. And so you're then getting damage. And then what happens when that nerve is damaged is it can sometimes send these extra signals. And that's going to cause the tingling sensation that you're getting.

Hannah  25:21

Right. So it's kind of it's sort of firing almost when it's shouldn't be

Mayen  25:25

Exactly. Yeah. Because it's been damaged. Right.

Hannah  25:29

Okay. And does that explain kind of the strange, some of the strange movements I get, like when my leg just kicks up randomly is just like a sort of?

Mayen  25:39

Yeah, so sometimes, it could be related to that. The other thing that I thought about that, sometimes we see is something called restless leg syndrome. And I don't know if it's that you feel that your legs are suddenly kicking off off, or you suddenly feel the need to move the leg rather than the legs moving. Because that is something that seems to be reported in people with long COVID. And you see a lot of people with general neurological disorders, and it can be just this sort of this need to suddenly move your legs and that's something we call Restless Leg Syndrome,

Hannah  26:11

right? Mine isn't really a need. It's usually it's one I've got, I'm just tapping away on my laptop. And I've been sitting down for a while, and suddenly my leg will just kick up randomly. And like at first, the way that I've tried to like, come to terms, the weird sensations I get is when I tried to just notice it and be like, Oh, it's okay. It's just my long COVID. Because I think if I really started to hyper focus on them, I worry that I'll then just start going a bit mad with all these bodily sensations. Yeah, so I try to just kind of like acknowledge it, and then just remind myself, Oh, it's just one COVID It's fine, because it isn't like, unnerving

Katya  26:53

Yeah, there are there are degrees, right? I'm I am, I don't have this symptom. But I saw a woman on YouTube who has it, one of her legs just doesn't stop moving. And I've readpeople self reporting on Twitter, then they experienced this symptom constantly. 

Hannah  27:10

Gosh

Mayen  27:12

it's really difficult. And it might be that it's a general sort of post viral phenomena. But because we're seeing so many people who had COVID, all at once, you're just seeing it so much more. And so it might be that actually that people who've had bad viruses will have had the similar symptoms, but we're just not seeing the same number of people reporting it. So whether it's unique to COVID, I'm not entirely sure. And it might be that actually, because because you do describe things like brain fog, lots of the symptoms that people have had after having awful viral illnesses. But I think we're just seeing the sheer numbers, because of COVID hitting so many people all at once.

Katya  27:55

That's pretty interesting. It is strange the feeling of suddenly not being in control of your body. Yeah, it's jarring.

Mayen  28:03

I think it's really important that we try and collect as much information on it as possible to try to understand it, because I think it's still very poorly understood. And although I can sort of tell you what the hypotheses or  the mechanisms in terms of why you're getting particular symptoms, I can't really address the root cause or really understand, you know, what's actually causing that. So it just this is the pathway, but what's damaging it?

Katya  28:33

Yeah, can I go on to the next question? And I did you want to know if you're on the back of that, go for it, go for it. And so something Hannad & I I complain about all the time, is our intolerance to loud noises and busy environments? Do you have any idea why that is suddenly start bearable?

Mayen  28:52

I suppose it's this sense of sensory overload, where you have an overstimulation of any of your senses, and hyperacusis, which is kind of sensitivity to loud noise, or how the brain is processing hearing, is thought to be related to damage of the small bones in the ear canal that then cause abnormal transmission to the hearing centers in the brain. It's also thought to be associated with abnormal function again of that prefrontal cortex and integrating all the information that's coming in. So you can have damage in the ear itself and the small bones where you get true hyperacusis and so you get an input, but the transmission is significantly it's over stimulated. Or it can be actually when it reaches the prefrontal cortex and you're integrating all the information is when you then have this overstimulation and it is reported ... the mechanism itself as to why that integration suddenly causes this overstimulation of your senses is really poorly understood, but you see it in a lot of other disorders. You see in post traumatic stress disorder and fibromyalgia, in autism, where they get this sensory overload. And again, it's just how that it's a functional problem how that brain is integrating the information.

Katya  30:09

It's fascinating to think that it might be that the sound actually becomes too loud in my long COVID damaged ears. Like, I definitely think I have that there are times when sounds will just suddenly be too loud. And like, yeah, I need total silence.   It also makes sense to me that it might be when everything comes together in the brain because it it's not just sound sometimes it can also just be there's too much for me to see right now.

Mayen  30:42

Yeah. So kind of even one of the visual inputs. So it's just this over stimulation of any of your senses. Really? Yeah.

Hannah  30:51

It's really fascinating. I just I think it's so interesting hearing you kind of explain how Well like anything like like hearing, there's this kind of, there's this part, it's not all just down to like, our like the structure of our ear. There's the pathway, there's this. Yeah. And it's that damage could be happening at any point along exactly the way and it's such a, I think it helps us to appreciate just how complex it must be for people to actually work out where the damage is happening, because it could be happening in so many different places. It's fascinating. And you forget, like you said, like the what you're saying about the prefrontal cortex, how much it does, when there's damage to that area or inflammation? It yeah, that's why potentially, we're we're dealing with all of these various disconnected symptoms that potentially kind of have. Yeah, like a shared underlying mechanism.

Mayen  31:52

Yeah. No, yeah. No, completely.

Katya  31:57

Its So funny. I can just totally see like the nerd and Hannah, coming out. Now, cuz it's so interesting. Yeah,

Hannah  32:08

I love it. And I feel like Mayen, you're explaining it. So clearly. I'm really enjoying hearing your explanation. Yeah. Yeah. I think it's just really validating for us, as well as, as people that live with these symptoms. To hear someone explain that potential underlying things, even though you're, you're like, you're saying you can't tell us everything, or there's so much that we don't know, yet. Still, I find it really, really kind of comforting in a way to hear you explain that there are, you know, potential underlying causes. I think it helps to kind of, kind of center me a little bit and be like, Yeah, this is ...

Mayen  32:47

Not just in my head.As in it is in your head because it's in your brain! (all laugh)

Hannah  32:53

Yeah, but like, we're not we're not imagining it. We're not creating this.

Mayen  32:56

Yeah, you're not imagining it... collectively! Something isn't functioning, something isn't working.

Katya  33:03

That one for me is especially comforting because the intolerance for loud noises makes me anti-social. And it's quite unforgivable to go into a social environment and be covering your ears or like leave because there's background music. Hearing this is very helpful, because I could just send it to all my friends and be like, This is why I'm not coming to your uncle's birthday party? Like, Well, that'd be music. Yes. Okay. No, that's, 

Mayen  33:34

Mayen  33:34

Mayen  33:34

That's fair I think that's fair

Katya  33:37

Shall we move onto the next question

Hannah  33:39

Yeah, go for it.

Katya  33:40

I feel like yeah, so this question is a little bit strange, but I'll try and word it out. But Hannah and I, and many other people with non COVID have had this experience of engaging in something that should be relaxing. And that experience triggering a deep state of fatigue and immobilization. So for me acupuncture, which I used to find really restful, now basically, it makes me feel like I'm drugged, and it can take days to recover back to my like, limited energy state. And I'd never heard of this written down until I read The Long COVID Handbook. And the author mentioned this theory called the polyvagal theory. Yeah. Which, which talks about traffic lights for our nervous system, and I don't know what the words mean. But in the theory, you have a green light, which is your parasympathetic nervous system. So what I'm not sure what that is, so I was going to ask, which is like your Yes, yes. digestate. Amber is your sympathetic, so danger, stress, and then red is immobilization and shutdown. And, sorry, the book mentioned an observation that's Some long holders will go into a state of rest. So they should be on green. But something happens that tips them over into the red and their body goes straight into immobilization. And I just wondered if you could speak to that.

Mayen  35:15

So this particular kind of ...this polyvagal theory, it's not a traditional neuroscience one, because there isn't really any evidence for it. So it's kind of a hypothesis that someone called Steven Porges came up with in the 90s. So I don't know in terms of how true it is, because I don't think there's much evidence for it. But it's a hypothesis. So when we think of the the nervous system, if you break it down into your autonomic and your somatic, so somatic are the things you control, so like the things that are moving your fingers, the nerves that supply sensation on the surface of the body, and then you have the autonomic nervous system, which are things that you don't control, so you don't control your heart beating, you don't control your digestion. And your autonomic system traditionally, is divided into your parasympathetic, which is your rest and digest or your sympathetic, which is your fight or flight. So sympathetic, your heart is racing, whereas parasympathetic is all about relaxation. 

Mayen  36:15

So this polyvagal theory comes from the vagus nerve, which is the main nerve that comes from the bottom of the brain that supplies your parasympathetic, so your rest and digest. So the polyvagal, meaning many vagus, I suppose, the theory is that the vagus nerve supplies this parasympathetic, which is your rest and digest, but it splits off into something called your emotional engagement, which is thought to elicit immobilization behavior. So it's sort of, it's meant to be this primitive thing, that if you were, if you felt you were in danger, instead of the parasympathetic system going down that sort of rest and digest, it would go down this immobilization, so people would pretend to be dead. So say, like it's meant to be sort of primitive, so if an animal thought it was being hunted or in danger, it would pretend to be dead, and then hopefully, the danger would pass. And so you then get this emotional immobilization. And so the hypothesis is that that particular system, instead of going into your rest and relaxation, goes down the immobilization route. And that's sort of your your traffic light system. And so that that is the theory. And so instead of going down your parasympathetic to relax, it triggers off that emotional engagement bit instead.

Katya  37:39

See, that's absolutely fascinating, because the level of exhaustion, sorry, Hannah, it feels like my body is playing dead. Like when I get that tired, it's like, it'll just trigger from my acupuncture or sometimes from non sleep deep breaths, I will just become comatose. Like, if ever there was a time to play dead, I could do it post acupuncture quite convincingly.

Mayen  38:03

So maybe there is something in it, but I it's not, I don't think there's much evidence for it. But clearly, if it's a sensation that you're feeling, then

Hannah  38:12

I was just kind of trying to build up an image of what this vagus nerve kind of might look like. So it starts because it began in the brainstem. Yeah, and then travels down and then has branches coming off it?

Mayen  38:18

So it goes down the neck and down the stairs down the body and branches come off and supply your heart and supply your gut.

Hannah  38:34

Right. Okay. And so they're saying it's polyvagal? Because it's like, there's kind of different things that the vagus nerve supplies? 

Mayen  38:42

Well, it's not. So the the reason that there isn't much evidence is because it's not like he's what he's proposing is not a structural division in the parasympathetic chain. It's a functional division. So instead of going rest and digest, it's going kind of emotional engagement, and immobilize. So it's meant to be more functional division coming from, and that's why it's very hard to prove. 

Hannah  39:10

Okay, got it. Yeah. Yeah.

Katya  39:12

Gosh, thanks so much for explaining that, that, that theory is it's just so interesting. I know we have time for one last question. So this comes from one of our listeners, but it's a symptom that has been described by loads of people online. And so this person has fairly regular episodes where they'll be completely exhausted, but then their speech starts to become affected. So it starts slowing down, it becomes slurred and they don't always make sense. And they start like staring kind of vacantly into space and they just can't really communicate anymore. And they wanted to know , is this the type of thing they should go and see a neurologist for or is it just part of the long COVID package

Mayen  39:59

 Are they aware that that's happening, because that's very different. Because if they're aware that they're a bit sluggish and a bit slow, then that can be part of brain fog. However, if they're having these kind of periods of absence of staring into space, and they're not aware of it, then I would certainly advise them to see a neurologist. Because then that could be you're describing a seizure, and then it would be worth investigating that, and it might be that then they need imaging to make sure that there isn't another structural cause that could be contributing to that. And then if that's all clear, then it might be that they actually do need some medication. So I would certainly seek advice in that situation.

Katya  40:41

Even if the person knows that they have long COVID, should they still see neurologist?

Katya  40:47

even in that context, because I wouldn't say that you should presume or assume everything is down to necessarily long COVID. And there was certainly a case report done of an individual a 70 year old, who developed epilepsy following COVID. And they would have what we call sort of temporal lobe epilepsy, where you do have problems with memory with awareness, and you do a lot of movements repetitively sort of lipsmacking over and over again, or the same thing over and over again. And certainly there's loss of awareness. And when they, and that individual had an EEG, which looks at the electrical activity of the brain, and you could actually see there were changes in the electrical activity of the brain in that part of the brain following COVID. So it's certainly worth seeing someone and not assuming it's down ust down to long COVID.

Katya  41:41

Yeah. Thank you. Thank you so much. That was really interesting. I've learned a lot. That was helpful. Yeah, it really was, I feel a lot less like this is in my head.Hannah, do you have anything to say?

Hannah  41:57

No, just thank you really like clear explanations...

Mayen  42:03

And if you did want to speak to a neurologist who does see patients along COVID, I do have colleagues who do actually see patients with lung COVID. In fact, I have someone who has a neuro intensivist. So works in intensive care with a lot of these patients with COVID, and has done quite a bit of work on inflammation as well in these individuals.

Katya  42:26

Thank you so much Mayen.

Katya  42:28

All right. And that was our interview with Dr. Mayen Briggs. Thanks so much to those who submitted questions online. We couldn't ask all of them that we did our best. And I hope you found this interview helpful. And a final thanks to Dr. Mayen Briggs for your time. 

Jingle  42:44

I'm having a good day. 

Katya  42:50

We've both agreed to take a break from the podcast. Yeah. I'm very excited to take a break. I love the podcast, and I, I can't believe like when I look back on this stuff on like what we've made. It's amazing. I just wanted one person to listen to us. And I think we have something like over 1000 listens. Which is crazy. Yeah, I know that people have really enjoyed listening to the podcast people with Long COVID whio have felt really sad alone have listened to us and laughed. Some of the messages I've received have warmed my cold COVID soul. And, and so yeah, I think on the other hand, though, making the podcast requires an enormous sacrifice, because we have to sacrifice a day on the weekend to record, to plan and then that's the whole edit. Yeah,

Hannah  43:46

I It's been like, really fun to do it. But yeah, there are a lot of components required. And I think it's sensible for us to take a break to avoid ourselves burning out and then come back refreshed to plan some more episodes and keep going. But yeah, practice what we preach. 

Katya  44:15

I'm um, I'm gonna take a break as well from the social media stuff. I've done a lot of work on Instagram, just growing the account like posting short videos and stuff.

Hannah  44:25

Oh my God, I don't know how you do it. 

Katya  44:27

It's tiring. 

Hannah  44:28

The social media stuff like it it fries my brain.

Katya  44:33

I'm going to take a break from that. What will you do Hannah with your with your weekend for the next like two months.

Hannah  44:40

Hopefully it means that I'll have opportunity to maybe do a little bit more social staff a bit more often, particularly now that it's moving into like spring and stuff. It would be nice to start trying to be a bit more social. So

Katya  44:53

yeah, , mine is less cool. I used to play League of Legends for my brothers on Saturday afternoon. Yeah and I haven't played a computer game since we started the podcast. Oh, so I literally like, I can't wait. I'm gonna be playing League of Legends. You have anything else you want to say?

Hannah  45:12

No, just thank you for doing all of the editing and slaving away on social media. And I feel like I've, I've just popped up for the conversations and then like, given my two cents on the editing process, but you've kind of been the mastermind behind it all and you've put in the grind. It's your podcast, but like plus Hannah, as Well as like, I don't know what

Katya  45:40

I disagree. If you want to we can put your face all over it. I genuinely wouldn't mind.

Hannah  45:45

I'm good. I'm fine. I'm very happy for you to continue to be the face. If your tolerance for social media is low, like mine is like, wow, like in the minus numbers.

Katya  45:58

So yeah, Hannah struggles with WhatsApp. So I don't think we're gonna get you on like Twitter and Instagram. I realized now I did some research into like how people grow on social media, you have to spend hours. I read one thing about Twitter and the guy was like, Oh, you you need to post seven times a day.

Hannah  46:15

What? Who will read your post seven times a day? Right?

Katya  46:19

But then I started looking at the people who get followed on Twitter. They will post like seven times a day.

Hannah  46:25

Geez.

Katya  46:26

It's just like an algorithm. Oh, yeah. I just wanted to quickly say, like to all the people who listen to us and have listened to us even after the one or two like bad or strange episodes, we have people who have stuck with us and people who will have listened to all eight episodes. They've heard us for like seven hours. So just a huge thank you to everyone who listens to the podcast because yeah, it's really, really cool. 

Katya  46:58

So a few final thank you's. First to Hannah. I know, Hannah says that the podcast is all me. But it really isn't. Her calm, measured, thoughtful approach to things has been an essential ingredient in this series. A huge thank you too to Hannah's partner, Chris, her mum and dad and sisters, for supporting Hannah, and for listening to draft edits of the podcast and giving us your feedback, I think at one point one of Hannah's sisters even looped in her boyfriend for a critique. So I really recognize the family effort. And it's so appreciated. Thanks to my boyfriend, Mattie, who's kept me sane throughout the project, and my parents who have listened to some of these episodes four times without ever once complaining, thanks to my friends, you know who you are, who listened to the podcast, even though you don't have long COVID. And of course, we wouldn't be anywhere near as professional if we didn't have a fabulous logo made by the illustrator Ellie Atkinson, and our brilliant jingle produced by Harry gold. Thanks to Gez Medinger and Dr. Mine Briggs for appearing on the podcast, and thanks to our listeners. Hannah and I'll be back later on in the summer. If you'd like to be notified of our return, head over to bounded energy dot code at UK and sign up to our mailing list or follow us on Twitter, Instagram or Facebook at bounded energy. If you'd like to get in touch our email address is bounded energy@gmail.com Thanks