66 - Lauren Stiles - President & co-founder of Dysautonomia International

Episode 66 of the Long Covid Podcast is a chat with the fabulous Lauren Stiles, President & co-founder of Dysautonomia Internation. Lauren describes herself as a "very high functioning sick person" and has so much amazing knowledge to impart about all forms of Dysautonomia itself, as well as the diagnostic journeys that many of us find ourselves on.

This was a hugely enjoyable conversation - I hope you enjoy it as much as I did!

Dysautonomia International Website

Dysautonomiainternational.org/doctors

longcovidresearchfund.org

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  0:00  
Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast or on Twitter and Instagram, both @longCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels or email longCOVIDpodcast@gmail.com I really hope you enjoy this episode. So here we go.

Hello, and welcome to this episode of the long COVID Podcast. I am absolutely delighted to be joined this evening, or I think this morning for you, by Lauren Stiles, president and co founder of Dysautonomia International, so no surprises what we're going to be talking about in this episode. So welcome to the podcast.

Lauren Stiles  1:28  
Thanks so much for having me.

Jackie Baxter  1:30  
I'm really happy to have you here. So to start with, would you mind just giving me a brief introduction of yourself and what it is that you do?

Lauren Stiles  1:38  
Sure. So I am from outside New York, outside the city, and I was an attorney and a sort of healthy athletic functioning person, who was not a sick person, for the first 31 years of my life. And back in 2010, I had a what seemed like a mild infection and then a really bad snowboarding concussion within a month of each other. And I woke up the next day and had full blown disaster health which of course, I didn't have language for that - I didn't say, oh dear doctor, I have Dysautonomia on day one, I was just like, What is wrong with me? I couldn't stand up without fainting. My GI tract stopped working. I had severe shortness of breath to the point that I was turning kind of grayish purple. And just everything seemed to go wrong at once. 

And it took two years of bouncing around to different doctors. And eventually, I was diagnosed at the Cleveland Clinic after a very, very large number of misdiagnoses, diagnosed with PoTS caused by sjogrens syndrome, which is a common autoimmune disease that causes autonomic neuropathies. And it was actually triggered by this kind of concussion and maybe the infection the month prior. So it's a little confusing, right? How does a concussion trigger PoTS? So maybe that's a whole another podcast in itself. 

But in any event, I've been part of the Dysautonomia, sort of chronic illness advocacy community for over a decade. I after my own diagnostic battle, you know, journey. I actually have a slide lecture I call ed"adventures in misdiagnosis", sort of I think a lot of long COVID Patients can probably relate to that, that I started Dysautonomia International with some like minded parents and patients and doctors who really wanted to advance this field and push the research forward and provide structured support groups and clinician education training programs to really just move us forward because it felt like we were kind of paddling in a sinking boat 10-12 years ago, it still feels like that sometimes today, but in the immediate term, it always feels like it's not fast enough. Nothing's happening. We're not being helped. 

But if you look at over the 10 years that since Dysautonomia International has existed, we have had dramatic improvements in that diagnostic delays are reduced. There are support groups now in all 50 US states and 60 other countries. There's doctors all over the world who are starting to get into this, that you know, not necessarily every country doesn't have a fantastic Dysautonomia center, but a lot of them are starting to get into this. And so we've made progress in that 10 years. 

And then a long way on my personal journey, starting out as a lawyer turned unintentional patient, right? I started getting into research and sort of pushing ideas like well, what if we do this and what can what can someone study this? And at some point, you realize, like, this field is so underdeveloped that even a lawyer could actually do some helpful research. And so I started doing actual research. I had a marine biology background before law school, and I ended up becoming, to my surprise, invited to become a Research Assistant Professor of Neurology at Stony Brook university of New York. So I don't have an MD or a PhD. I'm a JD, which doesn't really count much in the medical field. But I've been able to work with some really great clinicians and other researchers to really try to set out things like the world's largest PoTS research registry, immune phenotyping studies. The first  immunotherapy clinical trial and Potts and other things. 

So between dysautonomia International and the Stony Brook research role I'm pretty busy for a complex chronic illness patient but I'm very fortunate in that I got access to immunotherapy because I had Sjogrens syndrome. And that was the game changer for me, like many assorted Dysautonomia, POTS patients, I had all the things right, they diagnosed IBS and fibromyalgia and mast cell activation syndrome and your joints are a little flexible. I didn't get the official Ehlers Danlos Syndrome diagnosis, but I have sort of some joints that are abnormally bendy for a, you know, an adult woman who's not a gymnast. And so anyways, I got all these diagnostic labels, but I knew that there had to be sort of some underlying thing - you don't, you don't wake up and suddenly have 15 different diseases. 

So for me, that underlying thing appears to be sjogrens syndrome, which is a systemic autoimmune disease. And so when we treated the Sjogrens, with IVIG, which is intravenous immunoglobulin, my PoTS and mast cell symptoms, and GI dysmotility and neuropathic pain, and sort of all the Things got dramatically better. And I'm not saying this is the answer for everyone, and it's going to make everyone dramatically better. But it was something that allowed me to have more energy to focus on advocacy. And, you know, even with IVIG, I'm not cured, I'm not like 100% what I used to be, but I'm, I kind of think of myself as like, I'm a really high functioning sick person.

Jackie Baxter  7:04  
No, that's wonderful. And you sound like you achieve a lot for even a non-sick person. So that's amazing. Yeah, it's really interesting talking about the whole sort of diagnostic journey. And, you know, with long COVID we're sort of a long way back in the process in that, but some of the things you were saying about the process of, you know, these sort of labels and new things, and you think, well, a label's not particularly useful unless you can do something with it. But certainly it Yeah, it's interesting about all these things that I now read research papers for fun, when I can, and, you know, I now understand what Dysautonomia is, and it's, it's really interesting how suddenly this kind of becomes your world, isn't it?

Lauren Stiles  7:51  
It's easy to go down the rabbit hole, you know, as patients we want, we want patients to be, and as patients ourselves, we want to be as informed as possible, especially when it's very hard to find doctors who have the expertise they need to treat you. Right, if you had a common thing that every doctor knew - if you had a broken arm, you wouldn't sit around reading journal articles about broken arms, because you'd be able to find a doctor who could do that very easily for you, and you would get on with your life, you know. But when you have a complex chronic illness that is very hard to find good clinical care for, in large part because we don't really have the research - that the research hasn't really been done to tell us like, What is the best way to treat this, you know, so you do end up becoming a bit of your own expert as a survival skill, right? To help you and I really think that's that's why I ended up becoming a researcher. There was no one studying my disease there, you know, pots had some researchers and sjogrens had some researchers, but absolutely no one was studying the relationship between these conditions. 

And so I started doing that and, and I see lots of long COVID patients jumping in on the research. It's amazing. I really think long COVID is possibly the first disease in history, where the patients did the research first, and really put the disease on the map and are playing a very large role in directing and coordinating, like, what are the research priorities here, and it is unique in that in that way. I should also mention, so you're a long COVID podcast, I got COVID in February of 2020, because I didn't already have enough health issues, apparently. And it was a pretty standard, you know, viral infection, stay home. I didn't need to go to the hospital. I wasn't intubated or anything like that. But I had lingering symptoms for over a year. And the very beginning we weren't calling it long COVID You know, we were I was just like, I'm having a post viral flare of my PoTS and Sjogrens which is really how I thought of it. 

But obviously, you know, there are lots of people with pre existing conditions, who got COVID and whatever they had got a lot worse. And some of them have not bounced back, you know, around a year, I like kind of got back into my baseline sick, like the normal, current illness stage I was in. But I see this really big diversity of - a lot of the conversation around long COVID has been about people who were healthy, and then suddenly got really sick, because that's shocking, right - when you're young and healthy. But I think we also need to talk about all of the people in the disability, whether they consider themselves part of a disability community or not, you know, sometimes people have chronic diseases, and they don't think of themselves as disabled. 

But if you had a chronic health condition that you were trying to manage and struggling, and then all of a sudden you got COVID. And now you have long COVID, you have long COVID plus your other stuff. And that's, that's a good section of this long COVID community, I think, and the research data has shown that out, that a lot. There are probably a lot of underlying diseases that might be risk factors for long COVID. So it's complex, you know, to try - it's hard enough managing long COVID by itself. But long COVID plus some other underlying diseases is definitely a challenge. So,

Jackie Baxter  11:17  
Yeah I think that's a really good point, actually, because it seems like, again, you know, this is obviously probably anecdotal, because it's what I've seen on like Twitter. But you know, you tend to see that either it's the, I was completely fit and healthy and this has hit me out of nothing kind of cohort, if that's even the word. And then there's also the other sort of flip side of it, where someone, like you say, had something pre existing, you know, maybe they were managing it quite successfully, or maybe it was a bit more of a thing. My words have gone, sorry. But but but yeah, and then they've got COVID on top, and, you know, sort of long COVID Plus, or what they had before plus, however you look at it. And it's it's really interesting, isn't it? 

Lauren Stiles  12:00  
Yeah I think looking at the diseases, the existing diseases that COVID worsens, actually gives us a medical clue as to the mechanisms of long COVID, right, we see worsening of PoTS, worsening of MECFS, worsening of autoimmune diseases, worsening of diabetes, right? So these things have a common underlying thread of you know, immune and metabolic dysfunction and certainly in the in the PoTS community. And I want to emphasize Dysautonomia isn't just PoTS. Sometimes, especially if this is new vocabulary to some people. Maybe we should actually step back and talk about what is Dysautonomia because I'm sure your listeners have a wide range of expertise.

Jackie Baxter  12:48  
Yeah, totally. Yeah, that was actually my next question. So. So yeah, absolutely. Because there's sort of different types isn't there - which is what I think people often maybe they think, Oh, I don't have pPoTS, so therefore I don't have any form of Dysautonomia, but it's not like that at all, is it?

Lauren Stiles  13:06  
So Dysautonomia is actually not a diagnosis in itself? It's an umbrella term, sort of like, infection is a big umbrella term and you have when - if a doctor says to you, you have an infection, your job is to say, what kind of infection, where is it in my body? Is it going to get better? What's the prognosis, right? So if someone says you have Dysautonomia, you should be asking what type of dysautonomia? 

The reality is that many doctors do not have the skills and diagnostic tools to distinguish - it's actually good that they've recognized you have a Dysautonomia problem - you have an autonomic nervous system problem but, so be aware that being told you have dysautonomia while helpful, doesn't really pinpoint the diagnosis, which is important to do because there's different treatments for different types of Dysautonomia. 

So what what is dysautonomia in the whole? It's a problem with the structure or the function of your autonomic nervous system. So if you remember back to high school biology, your autonomic nervous system, in the simplest terms, you have the sympathetic branch, which is your fight or flight response, it raises your heart rate, it raises your blood pressure. This is when you're about to give a speech and you're nervous and you get the butterflies in your belly. That's your sympathetic nervous system kicking into high gear. And then the other branch is the parasympathetic nervous system, which is the Netflix and chill I call it - people would say rest and digest, but I think the modern version of that it's the Netflix and chill branch. This is it helps you with sleep, relaxation, it's anti inflammatory. It's sort of pleasure you know, things that are - yoga is like the thing that triggers your parasympathetic nervous system to function, to increase, so that's an overly simplistic view of it. There's actually lots of crosstalk and feedback and other parts. But those are the two main branches. 

And so what we see in long COVID, and in most chronic diseases, not just Long COVID, is that people have generally speaking, right, there's always the exceptions to the rule. But the general concept of in long COVID Is that people have too much sympathetic nervous system activity. So too much of that fight or flight, heart rate, blood pressure getting all wacky and gi motility is impacted by the autonomic nervous system too. And they have a reduction in their parasympathetic nervous system. So they're losing the benefits of that rest and digest and anti inflammatory and sleep function. 

So why does this happen? Well, there's many different ways your autonomic nervous system can go wrong. Some people have an actual neuropathy, where the autonomic nerves have been damaged and are now partially missing. If you had no autonomic nerves, you wouldn't be listening to this podcast, you'd be dead, but most types of post viral Dysautonomia, I want to reassure people - post viral dysautonomia is really not usually fatal. It is - POTS is not fatal. We have no reported cases of anyone ever dying from PoTSand believe me, sometimes patients think well, they're just not telling us you know, and it's not like that at all. If PoTS was fatal, every PoTS researcher would be putting that in their journal articles and their grant applications because they get more research funding, you know, so it's not fatal, but it's very debilitating, really, really debilitating. 

So the different types of dysautonomia that we commonly see in long COVID would be PoTS - Postural Orthostatic Tachycardia Syndrome, which has its own diagnostic criteria. Then also we see Orthostatic Intolerance, which is essentially PoTS without the tachycardia. I think it's probably the same disease, but it has a different diagnostic pathway right now. Those are the two most common, I'd say POTS is probably the most common OI, and then less commonly we see Orthostatic Hypotension, which is a more severe dysautonomia than pots or OI, and it's an acute drop in blood pressure, like each time you stand up. And it's considered a type of autonomic failure, usually only seen in older people, but in severe like if you had pretty bad nerve damage from COVID, you could get an O H diagnosis. 

And then there's other types of hyperhidrosis, which is really excessive sweating, like like pathologically excessive sweating, hyperhidrosis and then we also see people with GI dysmotility problems like gastroparesis or esophageal dysmotility. And that's all regulated by your autonomic nervous system. And then really not common, but also part of the autonomic nervous system, we might see bladder dysfunction, so your your bladder muscles and all your smooth muscles in your body, not the arms and the leg muscles, but the organ muscles and the blood vessels and the glands are all regulated by the autonomic nervous system. So you can get bladder dysfunction, dry eyes and dry mouth is a dysautonomia symptom because your tears are regulated and your saliva glands are regulated by the autonomics. 

Anyways, yeah, it's, it's confusing when you're new to it. It's a lot. It's a lot to learn. But and I think even for doctors, because I think that's part of the reason why we don't have a lot of autonomic experts, is because this is the type of medical problem that is cross discipline. You know, I think a lot of doctors these days, if you're going to be a specialist, you become a pulmonologist and you become like the expert in lungs. But it's harder to find doctors who have expertise in all of that stuff I just mentioned, right - blood vessels and heart and pupils and saliva and bladder and kidney function and sweating. And - it's a lot.

Jackie Baxter  19:10  
Yeah, it is, Yeah. And I think there was someone that was interviewed that described, the sort of medical system is very siloed. And I think that's exactly what you were just describing wasn't it, where you've got your heart specialist and your lung specialist and your bladder specialist, and none of them tend to speak to each other. So it just makes it very difficult when you've got a condition that encompasses all of these things because you're punted around specialist, to specialist, to specialist, which isn't hugely useful.

Lauren Stiles  19:36  
Yeah, I think that some long COVID patients have a single origin problem, you know, where they just really have a respiratory problem and they need a good pulmonologist. But I think a majority of long COVID patients, particularly people who are still sick at six to 12 months after their infection, these people have a systemic disease that requires comprehensive thought processes, right? Not, we're not going to fix the lung and fix the heart and fix the whatever, we have to think of - what is making all of this go wrong? And how do we comprehensively help this patient. 

And so that's what we've been pushing for with the long COVID clinics, because as I'm sure your listeners know, they come in varying qualities and characteristics, right, there are some long COVID clinics that are really great. And there's others that have popped up that really don't seem to know what they're doing and maybe aren't learning as much as we'd like them to. And it's very frustrating, I think, if you land at one of those clinics, and they're just taking that one organ at a time approach, you know. 

But in terms of Dysautonomia, autonomic disorders, even before COVID, 50% of our patient population was post viral in nature. So we didn't call it long influenza, or long epstein barr, or long mycoplasma, which might be what I have right, that was my initial infection a month before my concussion, we didn't call it long, you know, infection name, but a majority of our population was post viral in nature. And so seeing long COVID clinics pop up is actually really amazing. We, this is wonderful, even if they're not perfect yet, you know. And so we're hoping that in addition to learning how to treat long COVID, effectively, and giving good clinical care, we want these clinics to also understand that there's this whole world of other people that were around before COVID, who had pretty much the same exact thing. And we're just not being paid attention to by the medical system in any meaningful way. 

So I would ask that the long COVID patients and doctors who might be listening to this, you know, obviously, you're understandably focused on long COVID advocacy right now. But I think we need to build a bigger tent, and put all of the different disease communities that are advocating together for you know, postinfectious conditions need a home, we don't really fit in any one particular discipline. So I think the more of us advocating together for like better post-viral condition care, because sadly to say, you know, to say the truth, COVID isn't going to be the last virus, that it's not going to be the last pandemic, right, that it was, it's the first one in our lifetime. But there's going to be other things that like this happened in the future, and we need our healthcare systems to be better prepared to handle large waves of people with post infectious conditions.

Jackie Baxter  22:37  
Yeah, exactly. I literally couldn't have put that better myself, despite trying to the other night. You know, it's like, you know, these conditions did not spring up as a result of COVID. They all existed beforehand. You know, it's, I guess, the sheer number of people all at once, that's maybe brought some of them more to the fore, which hopefully, you know, it's not a good thing. It's obviously not a good thing. But like you say, I'm hopefully it is a platform for everybody to work together, because that's what we want, right, isn't it?

Lauren Stiles  23:07  
Yeah, I find myself being angry on behalf of Long Covid, like if we had properly studied PoTS and other types of dysautonomia, and chronic fatigue syndrome and stuff like this, before COVID, we would know how to treat long COVID much better than we do. So that failure for government agencies and pharma and academia to - and I don't want to paint everyone with the same brush. There certainly were people in pharma and government and academia who were doing good work for these patients before COVID. But it was a very small minority of people. And so the fact that we didn't do that is now why we have millions and millions of people around the world with this post viral illness that we don't really have great tools. We have some tools, right? It's not a complete...

Actually, I wanted to touch on this, if you don't mind. I hear a lot of media or even doctors saying, oh, there's no treatments for long COVID Right. So there's no government approved, formal clinical trial, FDA or EU approved, you know, but we know if you have long COVID dysautonomia of some sort - long COVID PoTS, long COVID orthostatic intolerance. We know how to treat that because it's just - long COVID POTS is PoTS, you know, these long COVID folks might have other stuff, right? And you might have in addition to PoTS, you have a respiratory problem, because you maybe had some lung damage from the virus or you have a particular fingerprint or imprint of COVID might be a little different. 

And I could see to say that about any virus probably, but we know how to treat post viral pots. We don't have a magical cure for it. I don't have a wand that makes everybody better tomorrow. But we have tools, you know, and there's the more tools in the toolbox that you have to treat your overall health problem, the better, so I really want patients who are advocating them for themselves to get care, to know that if you're lightheaded, if you're dizzy, if you have a racing heartbeat, if your blood pressure is way too high or way too low, you know, this is a type of dysautonomia, and we have tools to treat autonomic dysfunction.

Jackie Baxter  25:18  
Yeah, definitely. There's so much that can be done, isn't there. I mean, I've basically been hacking my way through this, kind of by trial and error, and which I think is probably true for quite a lot of people. Because, you know, there wasn't really much help out there. And of course, I went and did all the wrong things first. But you know, since I kind of worked out what it was, it's literally been kind of like I'll try that. I'll try that. I'll try that. But it has been very much kind of Yeah, trial and error, you know, mistakes all over the place. So would it be possible to kind of talk through some of the things that can help or is that a bit too sort of wide of a question?

Lauren Stiles  25:55  
Oh, it is a wide question, but there's some general concepts. If you have long COVID PoTS or long COVID orthostatic intolerance, or even long COVID orthostatic hypotension? Well, my first piece of advice would be actually try to find a doctor who has some expertise in autonomic dysfunction. Our website lists doctors and countries around the world, dysautonomiainternational.org/doctors, a shorter website to remember because I know long COVID folks are brain foggy  just like POTS patients. Curepots.org is an easier site to remember and that's the same website, it goes to the same place, and we have like find a physician. 

And then we also have support groups in all 50 states and 60 countries where you go on the support group. Each support group has a list of helpful doctors and everything from This gynecologist is dysautonomia savvy, this dentist you know, rheumatologist, cardiologist etc. You know patients advising other patients on like who's good at this. So get a good doctor but the reality is the waitlist for the top experts in this are very, very long. So a big piece of dysautonomia treatment is self management type things. In addition to medications, you really do need to do both. Most patients need both. 

So the standard self management stuff that a doctor would recommend after they've diagnosed PoTS or orthostatic intolerance would be increasing your salt and fluid intake. So it's not just you know, drink a little Gatorade or something like that. Standard recommendation would be three liters a day of hydrating fluids. So coffee, caffeinated tea, and soda and alcohol don't count. So you can't have four Mojito a day and so you've met your hydration needs sorry. The fun thing about having POTS is you feel drunk and you haven't even had any alcohol. 

So three litres a day of hydrating fluids, and then eight to 10 grams of salt per day, which is a lot but I would say don't purchase - some pharmacies sell one gram or 1000 milligram salt pills, they're just straight up sodium chloride tablets, they will make you barf, it's too much salt at once, and they make a lot of people nauseous. So I would advise against that. If you if you don't have a lot of money to spend as we know a lot of people are struggling economically if they can't work or things like that, you can just do this with regular table salt on your food, you know, but if you want for convenience factor and just sort of helping you get to your salt goals, there are lots of kinds of hydration salt products. 

We love VITASSIUM, Ium, and I will totally disclose they do donate to Dysautonomia International, but we're very selective in our corporate partners, because we only want to work with companies that actually have good products. So we love Vitassium. And all it was actually developed by some doctors at Johns Hopkins who treat pots and chronic fatigue patients in collaboration with the company. So they're really great product is called Vitassium. And that has a lot of sodium in it. There's other like oral hydration drinks that are you know, just tons of them available now. I don't want people to feel like you have to spend tons of money to be treating yourself appropriately. These are just things that are like really convenient, and you know exactly how much you're getting because you can read it on the label, you know, so those can be helpful. 

You have to do the salt and fluids together. If you only do one of them, it's not going to have an effect. And the reason we do this is because people with PoTS and probably most people with orthostatic intolerance have low blood volume, they actually are missing a quantity of their blood. And so when you increase the salt and fluids, you're increasing the plasma clear, watery part of the blood. It doesn't increase the red blood cells, which are also low in these patients. But filling up the tank with salt and fluids is better than nothing, right? 

And so the primary way that we increase red blood cell volume and PoTS is probably a little controversial in long COVID. Because I think the jury's not out on how much exercise and when, but in in standard PoTS, the standard recommendation is that regular exercise is really important. And the reason why is because it helps build your blood volume, your red blood cell volume. So I caution patients to just go at your own pace. You know, sometimes you have a feel good day, where you're like I feel good today, I should go for a run like, Nope, you should pace yourself, you should try to get whatever your level of activity is right now. You know, trying to super slowly at your own pace. And don't overdo it. And if you do overdo it, forgive yourself, right? You're learning as you go with this. I'm 12 years into this and I still overdo it. Sometimes you learn the hard way. 

But I think whatever you feel comfortable doing, you should try to remain as active as possible. The more you lay in bed, because you feel awful with PoTS, right? You want to lay in bed, it feels awful. The more you lay in bed, or don't get physical activity, the worse PoTS gets. And we know this from research and from the lived experience of patients themselves saying yeah, you know, if I get a cold and I lay in bed for a week, or a surgery, you know, this makes PoTS worse. So that's the do it yourself stuff. 

Also, medical compression stockings. So the most helpful, we actually have research now done by a PoTS patient, I'll add, who's beginning her MD PhD, showing that abdominal compression is the most helpful place to have compression for orthostatic disorders, autonomic disorders. This is because most of your blood pools in your lower abdominal area when you stand up. Your feet might turn purple, but it's actually pooling in your gut. So abdominal compression, you know, you could buy that at a medical supply store. But other people use things like Spanx. It's easier for women to find kind of like you know, those granny panties that are really tight and holding all the muffin top in, you know, older women know what I'm talking about, younger girls are like what, but those really tight compression, you know, shapewear is what it's called now, but also medical compression stockings. 

Some people just feel like these are just too uncomfortable. I can't wear these. So they prefer like knee high compression socks. And those are, you know, there's some benefit to them. Certainly lots of waitresses and nurses and people who are on their feet all day wear those. There is some benefit to like really tight compression on your calves. But if you're really want to try the most effective tool you need is full abdominal and full leg compression. So in the US, you can get these covered by insurance if your doctor writes a script for them. I'm not sure in the UK and other countries how that works. 

So another thing would be getting good sleep - easier said than done. If you have insomnia or just sleeping at the weird wrong time of day, you know but good sleep health is, is really, really important. Because even missing one night of sleep significantly disrupts your autonomic nervous system function even in a healthy person. So those of you who are younger and still do the college all nighters, you know, that's not good for your autonomic nervous systems. If you already have a long COVID dysautonomia going on, you're going to make it worse if you're not getting good sleep. And it's worth it if you're having sleep trouble, reach out and try to find a sleep specialist. There's lots of different ways they try to manage and help people get good quality sleep.

Diet, which is sort of always a big question mark, what should I eat, you know, and so we have some research in PoTS showing that carbohydrates increase PoTS symptoms because it increases blood pooling in the gut. So I wouldn't say don't eat any carbs because that's not you know, healthy to be so overly restrictive, but trying a low carb diet and focusing your carbs on complex healthy carbs like vegetables and whole grains. Rather than you know, junk food like the processed food we all love. Most of us love. You know Oreos are not good for your PoTS even though I love them. But you know, whole grains are much better and obviously, you know, lean proteins and vegetables and stuff, 

I would say less on the research side but more on the patient experience - eating an anti inflammatory diet, which has Omega three, so salmon, walnuts, olive oil, like a Mediterranean style diet can be helpful to sort of reduce the inflammation that we presume most long COVID patients have, whether you have blood tests proving it or not, and then eating smaller meals throughout the day. So if you eat a big giant pasta dinner that's going to make your dysautonomia symptoms feel worse. And so we tell Dysautonomia patients to eat smaller meals throughout the day, like be a cow and graze you know, and see if that helps. And if it doesn't help it, you know, with the dietary stuff, I'd say give it a try for a month. And if you don't feel any different than don't go out of your way to do kind of excessive effort to put it. 

I also want to recognize for patients that having to learn all these new lifestyle things and incorporating them into your daily routine takes time. And it feels really overwhelming in the beginning. So I would say do one at a time. And then you get into the habit of it. And then you add another one, you know, those are major lifestyle things. 

Medication wise, there's a lot a lot of options for medications. That is really more tailored to your specific situation. So you need a doctor to figure out which one to try. But beta blockers are really common to slow down the heart rate. If you have tachycardia; too much Beta Blockers can make you fatigued and more brain foggy and lower your blood pressure. So there's this other drug called Ivabridine or Corlenor, Corlenor is the brand name so it might have different brand names and other countries but Ivabridine is the drug name. And this slows down the heart rate without dropping the blood pressure. And it doesn't seem to increase the fatigue or brain fog. It's harder to get insurance approval for it because it's more expensive. 

Midodrine is another one, this constricts your blood vessels to help push the blood back up to your heart and brain. Which should conceptually reduce some of the brain fog, slow down the heart rate, normalize the blood pressure a bit. People also use Mestinon. So this is a drug that increases the parasympathetic nervous system side. And so it has a lot of different effects. But I personally think one of the most interesting effects of Mestinon Is it actually has an anti inflammatory property to it. It stimulates the vagus nerve. So it does a lot of neat stuff. And I'm hoping that we're going to see some mestinon clinical trials in long COVID. Mestinon can cause about 20% of patients get really bad diarrhea from it, so they can't continue it. But if you have GI motility that's too slow, Mestinon might be your best friend. So, but it's definitely the kind of drug you need a doctor who knows what they're doing to prescribe it because it's pretty serious drug. 

Then we also have patients who take mast cell activation related drugs, usually starting with a standard antihistamines, over the counter anti histamines. So we don't have really any clinical trial research using these in PoTS or orthostatic intolerance. But we do have a huge amount of patient anecdotal data saying this helps me you know, and so we need to have that formal research happen. But it's pretty benign to try an over the counter anti histamine and see if it helps - take you for a week, you know, but I want to make it clear there are definitely other medications. That's probably a whole, you know, semester of medical school on all the meds we use for autonomic disorders. But I want people to know that they exist. You know, there's options - if you're being told there's no treatment for PoTS or there's no treatment for Dysautonomia it's because you're seeing a medical care provider who doesn't know what they're doing, at least on this topic, you know?

Jackie Baxter  38:35  
Yeah, absolutely. And it sounds like your website is a really good place to go for Well, lots of things actually. So I'll drop it into the show notes. So I'd say that's probably a really really good place to start.

Lauren Stiles  38:47  
We also we have another site longCOVIDresearchfund.org which is part of dysautonomia International, because there's such an overlap between dysautonomia and long COVID. And actually, our research that we published with Stanford University found that 67% of long COVID patients have moderate to severe dysautonomia. So we as an organization at dysautonomia International said, well, we need to start funding long COVID research. So we've been doing that - we funded some studies looking at low dose Naltrexone, EECP, which is sort of I always forget what the acronym stands for. But it's like this like leg compression thing. I'm having a brain fog moment, guys, but EECP 

Then we also have stuff looking - you're the first to hear we're just about to announce, we're going to be funding a long COVID PoTS IVIG clinical trial immunotherapy. And we're also funding a bunch of research looking for various auto antibodies and other immune markers in long COVID patients to hopefully design more targeted treatments that get to the specific immune mechanisms. So there's a lot going on. I know it's really hard living with a sort of a mystery condition. But there's lots and lots of good research happening. So have hope and keep chugging along. And I think eventually we're going to have good answers for these patients.

Jackie Baxter  40:12  
Yeah, that's amazing. That sounds like another like four episodes just in the things that you've just mentioned.

Lauren Stiles  40:18  
Sure, sure. I'm happy to come back and talk about some clinical trials. And I think one of the things we have to do as a community is mobilize our patients and encourage them when there are clinical trials that are enrolling, really helping get people enrolled as quickly as possible so that studies can be done and published as quickly as possible - one of the biggest delays in research is difficulty enrolling patients. So I know that there's this huge community of long COVID folks that are like Put me in the study, you know, I want the I want the new drug. So we could, you know, have another chat on that. There's so much going on there.

Jackie Baxter  40:55  
Yeah, that would be absolutely fantastic. Yes. Cool. Well, thank you so much for today, I've learned loads. So it's been an absolute pleasure for me. So thank you so much.

Lauren Stiles  41:06  
Thanks for having me and thanks for posting this for patients and providing this information for patients is so helpful.

Jackie Baxter  41:14  
Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of long COVID podcast. It's available on all the usual podcast hosting things and do get in touch. I'd love to hear from you

Transcribed by https://otter.ai