57 - Dr Sanjay Gupta - the PoTS Specialist

Episode 57 of the Long Covid Podcast is a chat with Dr Sanjay Gupta, a doctor who has been specialising in the treatment of PoTS since before Long Covid.

We chat about the influx of PoTS patients since Covid began, how he got into treating these patients as well as what his treatment recommendations would be (some of which can be done from home ourselves).

Youtube channel 

PoTS Specialist website (lots of resources & some discount codes) 

Dr Sanjay Gupta website

York Cardiology website

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(music - Brock Hewitt, Rule of Life)

Transcript

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 enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to be joined tonight by Dr. Sanjay Gupta, who is a cardiologist and PoTS specialist. So we're going to be talking a load around that. So welcome to the podcast.

Sanjay Gupta  0:16  
Thank you so much for having me.

Jackie Baxter  0:18  
I'm really excited to have you here. So to start with, would you mind just introducing yourself a little and what it is that you do?

Sanjay Gupta  0:25  
So my name is Sanjay Gupta. I'm a cardiologist, I have been in medicine for almost 30 years. And I have been working as a consultant in general cardiology in York for the last 11 years. During the course of my career, I have come across, or I had come across patients with this kind of unusual condition called PoTS several years ago, but I never really sort of got into it until about five or six years ago when I came across a patient. And you know, unfortunately, there's the general way doctors think, because they've lost all sense of humility these days is that if we don't understand it, then the patient's mad. And this is how I came to think of pots initially. But then when I started spending some time with these patients, I realized that actually, they were very, very just normal people very intelligent, very sensible, very honest, whose lives had just been turned upside down through no fault of their own. 

And the more you start listening, the more you start realizing the other patients who were complaining about this thing had very similar stories, they had very similar symptoms. They all were sort of just getting on with their lives and suddenly out of the blue, they're left completely debilitated by this multitude of symptoms. They've been looking for answers for 10 years, they've had all the tests in the world and still, you know, no diagnosis, no unifying diagnosis was made, but they what they ended up doing is accruing a whole list of different diagnoses because they would go to a gastroenterologist and the gastroenterologist say, Oh, you've got IBS. And then they'll go to a cardiologist and say, you have anxiety induced palpitations, and, and so the more diagnoses they accrued, the more complex they sort of seemed, and the less time doctors would spend with them. Because it's  this is a complex case, clearly mad. And, you know, I can't I can't spend my time over this. 

And so these poor people were left in a very difficult situation where you just almost are cast out by the medical community, you know, just left out in the cold by the medical community, because you as a patient, all you want to do is get better. All you can do to get better is to ask for help. And the more help you ask for, the more the medical community stigmatizes you. And so the more time I spent with them, the more I realized that actually, even if I didn't understand the condition, that doesn't mean that these people didn't deserve my listening ear, didn't mean that they didn't deserve compassion, or support. 

And so that's where my journey began, I started spending more time with patients, I started realizing that there were patterns. As during the course of my career, I started up a YouTube channel just to try and educate patients. I took the information that I had accrued from listening to patients, and I tried to present it in an easily easily understandable language. And that seemed to resonate with patients. And so patients started coming to me, and very rapidly, I accrued a huge number of patients. And now I have, over 1000 patients for sure that I look after.

And it has been one of the most satisfying things I've ever done. These are not complex patients, these are patients that have been made complex. These are patients, you know, the the incredible thing with patients like this is that when patients feel better, when they feel listened to and when they feel better, even if it's a little bit better. They come back and they tell you that Thank you, you listen to me and they feel better. And that is far more satisfying than giving someone some aspirin or a statin, no patient, no patient, in my medical career has come back and said, Oh, thank you for putting me on more tablets. 

But the kind of feedback you get from patients when they feel better when they bring back and they say I'm looking at I haven't been able to celebrate my son's birthday for the last eight years. And you know what? I could stand up today, and I could host the party. And that means more to me than anything else. What else could I ask for? What can be more fulfilling for me, as someone who ventured out on this journey to try and help people than that, than that feedback, so, so that's where I am. So I have a bunch of patients with PoTS. I can't claim to know that I know how to treat or cure patients, I don't. But what I do know is that these are very debilitated patients, through no fault of their own. And they absolutely absolutely deserve our kindness, our support, and our wish to try and get them better. 

Jackie Baxter  5:48  
Yeah. I think everything you've just said, is going to resonate with people with long COVID. Because, again, it's not exclusively but so many people that I've spoken to and heard from, have talked about this idea of not being believed. And it just makes everything else so much worse, doesn't it, when you go to a doctor who is supposed to be helping you, or at least trying to help you? And they turn around and say, Oh, well, you know, I don't understand this. So you must be lying. And then, you know, it's not everybody at all, by any means. But it's not a good feeling is it? 

Sanjay Gupta  6:26  
I agree, I mean, medicine was supposed to be about care, about compassion, about connection. And unfortunately, it's become about posturing, preening pill pushing. And doctors are protocol centered, doctors are not patient centered anymore. You know, and I have always believed that the only reason I am a doctor is because there's a patient somewhere, the patient makes me the doctor, right? If there was no patient, then there wouldn't be any doctors. So you don't go along to the patient and say, oh, what you say has to fit with what I want to listen to. You just go there and say, Okay, I'm here to learn from you. I'm here to listen to you, and learn. And hopefully, I'll be able to help someone else from the experience I've gained from you, who complains of similar things?

Jackie Baxter  7:26  
I love that idea of you know, we're all learning, aren't we? Whatever our field, I guess. I mean, I'm not a doctor, I'm a musician, but you know, you never stop improving, do you or looking for ways to improve?

Sanjay Gupta  7:40  
And the other thing, of course, is, there is this kind of idea that oh, gosh, you know, you know, it's either our way, or the highways there, you know, whereas it should always be the patient's way. So what you want to do is you want to not only, you want to build a team around the patient, you want people - it shouldn't be Okay, if I think it's this, and you go to see a naturopath, then you're clearly going over to the dark side. We should be thinking, let's incorporate everyone who wants to help the patient, because lots of minds are better than one. 

And so we have to collaborate and we have to collaborate with other healthcare specialties, affiliated healthcare, acupuncturists, naturopaths, Allopaths, homeopaths, all of those people who got into their fields, because they wanted to help. And what we're doing at the moment is we're saying, well, it's not for me, go there. And what we should be doing is forming a team and team of support around the patient patients is central to that. And that doesn't happen. And unfortunately, this is the biggest challenge for patients with conditions that are poorly defined or poorly understood, where they just go from one person and they just get pushed to someone else, and they go somewhere else. And no one takes charge. No one is willing to step out of their comfort zone for the sake of that patient.

Jackie Baxter  9:06  
Yeah, that's true. So let's talk about PoTS a little bit. I mean, it's something I had never heard of, until long COVID. And I'm sure I'm not alone, in that, but I'd imagine that a lot of people with long COVID have now at least heard of it. But would you be able to just explain a little bit about what it is, I guess?

Sanjay Gupta  9:27  
Yeah, I think the first thing I would say is PoTS. Basically, if you think of the term - Pots refers to Postural Orthostatic Tachycardia Syndrome, so basically, in the old days, what used to happen is patients would turn up to their doctors and complain of this multitude of different symptoms. I'm tired, I don't wake up feeling refreshed. I have brain fog, all this kind of stuff. And because they're slightly nonspecific symptoms, you know, they weren't taken too seriously, and but one thing that the patients would mention to their doctors is that My heart races particularly When I stand up, so on the basis of that the general practitioner would say, Oh, well, let's send you to a cardiologist. 

So you go to the cardiologist, no cardiologist says, Okay, so let's see what happens when you stand up. Oh, yes, your heart does race when you stand up and you don't like it, when let's give it a name, Postural, you stand up, Orthostatic, you stand up still, tachycardia, your heart rate goes up, syndrome, you don't like it, and that's it - it's not a particularly helpful term. It's just a description, in sort of fancy jargon, of what the patient is describing. And so that is now considered what it is. 

And unfortunately, this term does patients a disservice. Because, you know, A, it does not capture everything else that goes on, and that poor patients life - that patient feels rubbish all the time, it's just that they feel worse when they're standing up. So POTS is not just a condition of standing up. The second thing was, that there is this man-made criteria, which is that, oh, your heart rate has to go up by more than 30 beats per minute when you stand up, and it has to be sustained. And if you hit that number, then you have PoTS. And again, that does patients a disservice. Because symptoms can vary, doesn't always happen to be that you have to hit the 30 beats per minute mark. And unfortunately, you know, when they don't, the doctor says, Well, okay, you know, you don't have PoTS. So now you clearly are mad, right? Because you don't even hit that this diagnosis. 

And actually, it's not the poor patient who is mad, it's the doctor who's mad, because what they don't realize is actually, Had you listened to enough patients, you will find that the same patterns exist in all patients - they complain of the same symptoms. And unfortunately, the criteria that is used, you know, we don't even know how valid that is. That's just something that's thrown out of, just thrown out there that it has to be 30 beats per minute. 

So in my own practice, I never rely on that. I'm here to treat the patient, not treat a test. I'm not here to treat a condition, I am here to treat the patient. And so from my perspective, I think that when you start talking to these patients, and you listen very carefully, a better term to describe what this condition is, is a Dysautonomia. And what I mean by that is the autonomic system consists of two contrasting sides, you have the flight and fight system. And then you have the rest and digest system on the other side. And when you listen to patients, they will say, I don't rest. I'm always tired. I don't digest it my gut is bloated, I'm constipated, I'm nauseous. I get cramps, that kind of stuff. And I'm always in flight and fight mode. It's like I've got too much adrenaline in my system, my heart racess, I get hot, I get Trembley, my legs tremble, it's like I've always been involved in a car accident and we're coming out of the car. That's how I feel all the time. 

So if you think about it, they have disturbances in that balance between their flight and fight system and their rest and digest system. In some ways, they're always in flight and fight mode and almost never in rest and digest mode. So they are simultaneously tired on one side and wired on the other side. And that is why the term Dysautonomia is much better because it takes away from this reliance on some kind of manmade number of 30 beats per minute etc. And you are now trying to understand the patient's symptoms. So I whenever I'm diagnosing it, I say I think you have a Dysautonomia. Now, if we do some kind of testing, it may have aPoTS face to it. But that doesn't mean you don't have a condition and that doesn't mean that we can't try and treat you

Jackie Baxter  14:10  
Right so actually this distinction between the technical criteria for PoTS and quote unquote bog standard dysautonomia is actually not that important is it?

Sanjay Gupta  14:22  
You see I think POTS is probably a puppy, as is chronic fatigue syndrome, as is long COVID, as is Fibromyalgia, as is inappropriate sinus tachycardia. But no one quite knows whether it's the same puppy or whether they're different puppies, but they belong to the same litter. And that litter is dysautonomia, 

Jackie Baxter  14:45  
which is why we're seeing all this crossover of symptoms in all of the conditions

Sanjay Gupta  14:50  
and no-one knows - they could be the same puppy, you know, or they're different, but but they're definitely from that same litter. And one of the big problems is that unfortunately, if you go around, I bet, like if a pots patient goes to a neurologist, and the neurologist doesn't find anything, they're given this term, functional neurological disorder, you have fnd, you've got something, we don't know what it is. And you are sort of almost labeled as Oh FND. They're, they're mad. And then if you go to a gastroenterologist, we don't know what it is. So we'll call it IBS. And you go to a cardiologist, and they'll say, Oh, we don't know, it's, you know, we'll call it pPoTS. 

So I wouldn't be surprised if you go to a neurologist and look at all their FND patients, that some of them actually probably have PoTS. And they've probably never been diagnosed. And they're sitting there with this thing that they've been given a label for, which doesn't really help them in any way. But because now they have a label, they're told, Oh, well, you can't do anything about that anyway. So just live with it. And these poor guys are continuing to live a debilitated life, when they could actually be help at hand.

Jackie Baxter  16:00  
Right. And that's where we go back to you saying that sometimes the labels actually aren't particularly helpful?

Sanjay Gupta  16:06  
If you're going to give someone a label, then the label is only helpful if you can offer them a treatment, which gets them better. But if you're just going to give them a label and say, well, there's no treatment for it, then I I'm not quite sure what that means, you know, we need to think more, we need to collaborate more, we need to talk to each other and say, Oh, actually, I've got similar patients as well. 

And this is the big problem with long Covid you see. Now the problem is long COVID is potentially considered a separate entity altogether. And my big problem with this is that in the old days, if you talk to most patients who have PoTS, for example, they'll say, Look, you know, I was okay, I used to get a bit tired, I used to get a little bit sort of, you know, dizzy when I was younger, and then I had a virus. And after that my life changed. So it was like I had the virus and I've never quite recovered from it, I can't stand up now, etc. So their lives change after some kind of virus. Usually it was glandular fever, Epstein Barr Virus. But there is evidence that coronaviruses could do this, you know, lots of other stuff can do this. 

So these people would get their glandular fever in their own time, they would end up with their GPs, again, at different points in life. And they would then just follow their own journey, and they would sort of be lost. Now you have a virus that comes and affects several million people all together. And it doesn't surprise me, therefore, that many people after this particular virus are complaining of exactly the same symptoms that PoTS patients said they developed, often another virus. 

The problem here now is that long COVID is thought of as a separate condition. And so because we're so protocol bound, because doctors just can't think for themselves, I can't definitely can't think out of the box, they'll be like, Oh, we have to wait for some magic treatment, which is hugely expensive to be produced in the States, and then be made available to long COVID sufferers, and then we'll, and while these guys will lose 10 years of their life by that time, you know. Why can't we think out of the box and say, actually, this was a virus. And we knew that lots of people get post viral Dysautonomias, and therefore let's get on and just treat them. 

And one of the other big problems is that because long COVID became very topical, the government started offering funding, and a lot of hospitals, just to get hold of the money, set up these services, saying, Oh, we will appoint a nurse, will set up a long COVID clinic, the nurse will ring the patient up and tell them to hydrate and pace once every six months. And that's it. And I think that there is so much more you can do if you are genuinely interested in this condition. If you're genuinely interested in those poor patients who are struggling with similar conditions, I think you go, you treat them as if they have PoTS or a Dysautonomia, and see how many get better. And over the last year or so I have accrued a ton of patients with long COVID, who have responded very well, to treatments for PoTS.

Jackie Baxter  19:12  
Yeah, that's excellent news. And you know, you were saying, I mean, we know that post viral conditions have existed for a lot longer than COVID. You know, they've been here for, I don't know, decades and decades, haven't they? And you know, we've been aware of them, but not really listened. And now all have these people because of COVID have all come along kind of all at the same time. So have you noticed any kind of different patterns in the patients that you saw before COVID and the ones that you're seeing as a result of it, or symptoms? Are they very, very similar?

Sanjay Gupta  19:46  
They're all identical to my mind. And the interesting thing is, you know, what you have to ask yourself is, is it COVID that is responsible? Does COVID cause long COVID? Or does COVID unmask a genetic vulnerability? Right? And so there are a few things to say, number one, only a relatively small proportion, 10% or so, of people who get COVID go on and to start developing long COVID symptoms. So you have to say, well, if it's all about the virus, if it's just about the virus, then why not everyone? What's so special about that subgroup of patients who develop long COVID? Surely there must be something about those people, which is different to the people who don't develop long COVID symptoms. That's number one. 

Number two, if it's just about COVID, then surely you would expect that those people who have the most severe infections go on and develop the post infective complications, like long COVID, there is no good correlation between how severe your COVID infestation was compared to whether you develop long COVID or not. 

Number three, when you talk to a lot of these patients, they say, you know, I wasn't quite right even before this, but I just thought that that was me. But since I got this, I am so much worse. And I get that quite a lot. So So again, that confirms in my mind that this is probably a post viral unmasking of some kind of genetic vulnerability, exactly what we see in POTS patients, but their symptoms are identical. 

I think it's also really important to say some people get it after COVID. Some people have come to me after they've been vaccinated. And so I get lots of people who say it was actually after I got the vaccine that my symptoms flared up. Very interesting. We shouldn't be talking about this, unfortunately, these days, you're not allowed to talk about stuff like that - the minute you start saying anything, which is doesn't toe the party line, then you're you're branded being unethical, but But I think, you know, again, the marker for civilized society should be that you should all be allowed to ask questions, and then appropriate experiments should be done. And those questions should be answered scientifically.

Jackie Baxter  22:13  
Yeah, yeah, definitely. So we've talked quite a lot about what POTS is, or PoTS and dysautonomia. I mean, I guess the next question is in two parts, really, isn't it? What can people do themselves at home? But what more would you be able to do in your own clinic, for example, to help?

Sanjay Gupta  22:31  
Okay, so the first thing I would say is that, you know, I would always encourage people to try and accrue as much information about this condition, because knowledge is power. And these days, some of the biggest barriers to you getting the care you need is the middlemen, trying to convince your GP, trying to convince your general cardiologist, and so the more information you have, the more vigorously you can advocate for yourself and say, Look, I want to go and see people who deal with this condition, I don't want to go and see people who have read about this condition, I want to go and see people who deal with hundreds and hundreds of patients like me because they will validate me. And that's important. They will give me a diagnosis, irrespective of how I perform on the day of the test. And that's really important. And then not only that, but they can build a team around me, they can educate me. And they can also make things like medications accessible to me. So getting lots of information is good. 

Now, as I say, also, knowing the problems with the diagnosis, which is I think it's a clinical diagnosis, I don't think there's a single test, I don't think people should think, Oh, well, I don't collapse, so I can't have it. You know, if you have a mixture of these symptoms that you're experiencing, and you feel that your quality of life is not what you had expected to be or what you wanted to be, then you are you should ask for help. You are entitled to have someone who is willing to listen to you, and try and help you navigate this. 

Now in terms of management, I'll talk you through what I do, some of which is what people can do at home. But I think there are four aspects to the treatment of PoTS or long COVID that I do. And I try and do everything simultaneously. So it's not like this kind of stepwise thing, come back in six months, do this come back in six months - No - do everything together. Patients have already suffered long enough, I hate the idea that now you make them wait and then they have to come back etc. You do everything together, you form that team straightaway. 

So what I say is number one lifestyle measures - lifestyle measures can help, can be very helpful. In general what we find is that in patients. Because there is no doubt that these patients, even though they feel rubbish all the time, they are definitely worse when they're standing up. So if you think about the physiology of standing up, when we stand up when we change posture, gravity has this effect of sucking our blood down. And therefore, we have to have compensatory mechanisms which prevent our blood from being sucked down so more blood can continue to reach the brain. And that allows us to remain standing. 

Now the two things that come into action, when gravity starts pulling our blood in towards it are firstly, our leg vessels, the vessels in our legs constrict, so there's no room for this blood to go down, and therefore it stays up. And the second thing is that we produce adrenaline and that Adrenaline increases the heart rate and pushes more blood up to the brain. Somewhere, one of those two things is faulty. So if you can increase the amount of blood in the body, then even though gravity pull from down, you've still got less to do to try and get the blood up, because there's more blood in the system, so to speak. So one of the things you can do is trying to increase the blood volume, how do you do that? Increasing fluid intake. 

Unfortunately, what we also find is that patients when they drink more, they urinate it out a lot more. So that's a problem because you feel rubbish, and they're having to go and urinate all the time. And therefore, you have to supplement with a ton of salt, you know, six to 10, grams - two teaspoonfuls of extra salt, because the salt is what holds the water in your body. Okay, and a lot of people will increase the volume of water that they're drinking, but will not increase the salt. Because of this idea that actually, salt is harmful. You know, salt is not harmful in this subgroup. In fact, salt is one of the most beneficial things in this group, because salt increases your blood pressure. For a lot of patients, the problem is their blood pressure falls. So it's just holding. So having lots of salts, having lots of electrolytes, having a lot of water can be very helpful. 

Another thing you can do is make the body smaller, how would you make the body smaller, because if you can make the body smaller than the amount of blood you have becomes more relative to that body. So you can wear compression garments, garments that are really squeezing your legs, pushing that blood up. And that can be very helpful. 

Other things that can help with things like this are changing your diet. So a low carbohydrate diet, what tends to happen again, when if you take a very carbohydrate rich meal, then carbohydrate rich meals ask for more blood in the gut. So you get more blood pooling in the guts, like it would pool in the legs when you're upstanding. And therefore a lot of patients will find that when they have had a big meal, their heart races, they feel absolutely rubbish, etc. So it's cutting your meals into smaller meals, low carbohydrate diet, high protein to try and maintain that muscle strength in your legs to avoid deconditioning is all very good. Supplementation, magnesium supplements can be very helpful. 

Also, the other thing that is important is a lot of these patients do not sleep well. They can sleep for 12 hours, but they wake up and they feel like they haven't slept at all. And the idea behind that is why does that happen? And we think that obviously in these patients, as I said that tired and wired, they're producing too much adrenaline. So when these guys lay down and go to sleep and like say a dog barks, you know, a normal person may produce a little bit of adrenaline, these guys produce a ton of adrenaline, adrenaline wakes you up, then they go back to sleep, then something else happens, etc. So all night long, you get these adrenaline surges. And maybe that is the mechanism behind lack of refreshing sleep at these patients. 

Unfortunately, when you have lack of refreshing sleep, you get tired. When you get tired, you get irritable, when you get irritable, you start cutting down on the things that you enjoy doing and you start becoming more socially isolated. And then you get depressed, then you get pain, then you don't sleep. And this is this horrendous vicious cycle that people find themselves in. 

So lifestyle can help and I would encourage everyone to try and incorporate lifestyle measures. The great news is, if it works, you will be able to tell it's working right. It's not something that you have to do for the rest of your life with no knowledge as to whether it's working or not. This is a quality of life condition. This is not a dangerous condition. It's not a condition that means that you die before your time. It's a condition that means you cannot live as well as you'd hope to. So in that setting, you know, incorporate the lifestyle changes even for a couple of weeks and see if you feel better, Great, keep going. So that's worth doing because it allows you to do something for yourself. 

The next thing is physiotherapy and trying to develop that muscle strength to try and help those blood vessels push more blood up to your brain when you stand up. The big problem with this kind of thing is deconditioning. So a lot of patients, you know, they'll feel strong, they'll feel like, okay, I've slept tonight, I'll try and become conditioned, they'll go for a run for five, you know, 5k Run, and then they're out for two weeks with post exertional malaise. And that is really harmful because the deconditioning that happens over those two weeks far outweighs the benefit that they may have had from just running for that day. So again, little but consistent, and try and build up is very good. 

And there are now some health coaches out there who can help people do this. There are physiotherapist, not all physiotherapists because again, you have to have physiotherapists, who are empathic to this condition, to those patients who can pitch their exercises at the right level. And often, some people have to start off recumbent and doing recumbent exercises and then building up over a period of time. So that's physiotherapy. 

The third thing is medications. And I'll talk you through the medications later on just after I talk to you about the fourth thing. And then the fourth thing I think is particularly important, and that is your patient advocacy, which is that when a patient comes to me, I say to them, okay. Yes, you have this condition, I acknowledge that, yes, you have some symptoms, and I can try and get those better. But there is that aspect that we don't talk about enough, which is reuniting that patient to his identity, meaning that you know, as, as your doctor, as someone who is genuinely interested in you, and wanting to see you flourish, I will be your advocate, I will write to your workplace, I will tell them what this condition is, I will tell them that you are not to be discriminated against, I will tell them that these are simple measures, which will allow you to do the best, which is what you want to do for them, without compromising on your health. 

And similarly with universities, and similarly with schools, and similarly with PIP. And similarly with blue badges. Because those simple things can make a huge difference for a patient, you know, otherwise, you're feeling rubbish all the time, and you're fighting all these other battles. So a doctor who is genuinely interested in you should be willing to stand up and say, Okay, I'm going to be your support system.

Jackie Baxter  32:46  
Again, it's coming back to that seeing the patient as a whole person, isn't it? You know, they're not just a tick box that you have to give a drug to. They're a person, not a number sort of thing, isn't it?

Sanjay Gupta  32:58  
Absolutely. That's what I would want for someone to do to me and to my dad. And then the fourth thing is medications. And I think medications are so important in this setting. Because whilst people are generally apprehensive about taking medications, the point is, here, the medications are purely given for one thing - to improve your quality of life. If the medications improve your quality of life and don't make you worse in any way, why wouldn't you want to take those? 

And the other thing, of course, is medications are a bridge to a destination, they're not necessarily the destination, a lot of people just worry about that. If it go, well, I'll take this and how long will it take them, I'm gonna be on them for the rest of my life. And I say not at all, you know, the medications get you out of that horrible hole, they break that vicious cycle. So that you can have a bit more energy, so that you're sleeping a little bit better and so you're getting mustering up the strength, the destination is self management, the destination is being conditioned through physiotherapy and making lifestyle changes. But to get to that destination of genuine need the bridge of medications. 

And the medications come in mainly two classes. Basically, you want to reduce the heart rate because the fast heart rate can be very debilitating for patients. It's very unsettling. It makes them breathless. It makes the whole body inefficient because the heart is beating so fast that the heart is not actually getting time to fill with blood to pump blood out. So you're working much harder and you're pumping less blood out. It's almost like you know, running at peak peak exercise. That's how you feel. 

So if you can slow the heart down, that does make people feel much better and I use a medication called the Ivabradine. That is a pure heart rate slowing agent. A lot of doctors tend to use beta blockers because they tend to be more familiar, but beta blockers don't seem to work as well as this particular medication called Ivabradine. And so if there's anyone out there who's Well, I was given a beta blocker and it didn't work. Actually, there's something much better than that out there that could control your heart rate won't push your blood pressure down, etc. So Ivabradine is something I use. And then you can use beta blockers if the patient doesn't tolerate the Ivabradine. 

And then there are medications which actually help you either retain more water, or help your muscles squeeze more blood to the brain. So one of those medications is something called Midodrine. Midodrine almost works a little bit like compression stockings, so it stops the blood vessels stretching in the legs, pushing more blood up to the brain. There's another medication called Fludrocortisone, which helps you retain more fluid. There's another really interesting medication called Mestinon. Mestinon is a rest and digest enhancer. So it works on your rest and digest system, trying to bring that balance back up, gentle drug, lots of people really like it. So that's another agent. 

I sometimes use something called DDAVP Desmopressin, which is a medication that used to be given to bed wetters. And the idea was that if they took this, then they wouldn't wet the bed because they retain that fluid in their body. So that's something you can give the patient to use as a pill in the pocket. So I have lots of patients who work on nursing shifts, for example, and they're terrified, they think, oh my God, I've got a 12 hour shift. How am I going to even manage, I struggle. So if they take that they can stand up for longer and it allows them to cope. 

So those are the kind of main medications that we use. There are others as well. We use things like low dose naltrexone, LDN, which is something that is an anti inflammatory, and can be helpful. We use Clonidine, which is again, an adrenaline antagonist that that can be quite helpful to people, we use antihistamines because a lot of these patients have a condition called mast cell activation syndrome, where, you know, they developed lots of allergies, etc, and putting them on antihistamine can be quite helpful. You know, and while these medications help patients, I don't find anyone who comes back to me and says, since you started medications, I'm back to normal, or I have noticed a dramatic transformation. 

But there is one thing that I think is transformative in these patients. And that is to give them intravenous saline. If you can directly bypass the gut and get fluid into the vascular compartment, into their veins, then people feel like, gosh, I'm back to, I feel like I'm normal again. Unfortunately, the problem is that benefit doesn't last beyond 24/36 hours. And so the patient would then have to go back and get some more. And so it continues. And the problem with that is that A, there are no mechanisms in place to do that on the NHS. So it's quite difficult to do B, there's no real kind of end, you know, there's no real kind of end, the patients feel better, and then they need more fluid and they feel better, they need more fluid. 

But to my mind, I think to myself, well, that you've still helped them. And even if they get two or three days, two days when they feel normal, that's good. And I have now in where I work, we have about 40 patients who are getting fluids, and they absolutely find that it's been the thing that's made a huge difference in their quality of life, their brain fog goes away, they don't feel tired, their colour returns, many of them actually come in the wheelchair and walk out after they've had their fluid. So it's a remarkable thing, remarkable that something as simple, as safe, as low cost can make such a big difference. And this is such a shame that people still, you know, you still can't make something like this easily available to patients on the NHS.

Jackie Baxter  39:15  
That is really interesting, isn't it? I wonder if there's maybe research opportunities there?

Sanjay Gupta  39:21  
I mean, absolutely. I would love, I would welcome anyone who wants to come and do research in my unit to come. My problem is as a sole person with so many patients, I just don't get the time. But the thing, the incredible thing about this, and I would this is something very important I think, that you know, we are just at the threshold of something of an epidemic being discovered. PoTS, Dysautonomia as an epidemic. There are so many people out there. I remember six years ago, this girl used to come and see me in a wheelchair and the nurse that's in my clinic would sit and say, Oh what's wrong with her? Oh, she's got a condition called PoTS. Oh, gosh, really? Gosh, what is this, you know, that's how they talk. Four, four nurses are now my patients with PoTS, four of those nurses, because now they started realizing that actually, I feel like, I used to feel like that maybe this particular patient looked a little bit more dramatic, but actually I had similar symptoms as well. 

So the point I'm trying to make is, it is far more prevalent than we think it is. And so this is an epidemic to my mind, you know, and if you think that 10% of patients with COVID get long COVID, then you could even make the argument that maybe 10% of people out there could have some kind of Dysautonomic tendencies, or just Dysautonomic vulnerability. So, when you are lucky enough to find yourself at the thresholds of the condition, waiting to be discovered by mainstream media, anything you do with that, and you become a pioneer, right, any work you do, will be counted as really important work, really kind of seminal work. Intravenous fluids, such a simple thing. We have plenty of anecdotal experience. 

And so I don't rely, I don't wait for someone else to do research, because why shouldn't I do my own research? What's wrong with my patients? They're telling me they're better, and I don't need anything else. You know, they're not worse, I haven't harmed anyone. And they're always grateful that A, I tried and B, they feel better. So if someone comes and does some research, then that is going to set the foundation for these services being offered, these services being studied, and potentially could transform care for these patients. Something as simple as just giving them intravenous saline.

Jackie Baxter  41:55  
That's huge, isn't it? Or potentially huge. Wow

Sanjay Gupta  41:58  
Yeah. 

Jackie Baxter  41:59  
That was one of the questions I wanted to ask you. You mentioned that PoTS or Dysautonomia wasn't a life threatening condition? I might have paraphrased but I think that was what you were saying. 

Sanjay Gupta  42:09  
Yeah

Jackie Baxter  42:09  
And I was just wondering, How dangerous is this racing heart rate thing, because I mean for me, I was a very early long COVID person, and it was utterly, utterly terrifying, which obviously, then increases your anxiety and makes it far, far worse. But over time, I've sort of almost normalized it, which again, is possibly a bit concerning in itself. You know, it didn't kill me last time. So maybe I'll be fine. But I mean, it this is something that you you see it on social media all the time. So I guess how dangerous is it?

Sanjay Gupta  42:42  
I mean, I can go by again, I don't think anyone has done long term studies. You know, most of the world didn't seem to even believe in PoTS. So trying to find researchers who could get enough patients, and then have the money to be able to fund studies is hard enough. Because, you know, all the funding comes from pharmaceutical companies. And if the pharmaceutical company is not going to sell a product at the end of it, why would they fund the study? And then of course, if you're going to do studies over, you know, when you're like taking sort of 20 year olds, then you have to do it for 50 odd years, you know whether that racing heartbeat resulted in something bad overall. So we don't have any studies like that. 

But I mean, I have over 1000 patients, and, you know, I know that they may be in hospital, I know that they may come to A&E, but I always knew that they're going to be okay, I have not observed people developing heart failure or dying or having heart attacks because of this PoTS uptrend. So I think it is more unsettling. And it seems more dangerous than it actually is.

Jackie Baxter  43:52  
I think that's probably quite reassuring, certainly to me, and I'm sure to a lot of other people as well. Unsettling for sure. But I guess if you know that you're probably not about to keel over with a heart attack that probably helps.

Sanjay Gupta  44:04  
It helps. But again, I think their quality of life is what is important. You know, a lot of people worry about, oh, my god is something bad gonna happen to me. To my mind, the worst thing that can happen to you is that you miss out on life. And I truly believe that, you know, quality of life has to be measured by the patient's yardstick. It's not for me to say, Oh, well, you just get that your quality. You know, the patient says it bothers them, it bothers them. If it's a problem for the patient it's a problem for the doctor. That's how it should be. 

Jackie Baxter  44:33  
Yeah, I like that. 

Sanjay Gupta  44:34  
I would very much encourage anyone who's listening to sort of try and get involved in research. You know, it's people, like-minded people, like-minded professionals working together that is going to make this happen. Otherwise, we're gonna just rely on some I mean, I'm sure there are a bunch of pharmaceutical companies thinking of interesting expensive chemicals to come out with. And but but simple things, simple things, believe the patient, simple things. Get them to see a person who's going to make a diagnosis without worrying about oh, you know, they haven't hit this mark. Get involved in research for simple remedies like intravenous fluid, let's get funding together so we can set these things up. If the NHS is failing us, let's get on and find alternative ways to get patients the care that they need. And that comes from patient power, that comes from patient empowerment, patient advocacy, that kind of thing.

Jackie Baxter  45:41  
Great, thank you. Well, thank you so much for giving up your Friday evening to chat with me. It's been absolutely fascinating. And there's loads of things in there that I'm gonna go and write down and listen to, again, I'm sure similar for everybody else. So thank you so much.

Sanjay Gupta  45:59  
Thank you. Thank you very much for having me. And I think I'd like to finish off by saying that I did a video once - I was asked to go to charity ball and talk about PoTS. And I think POTS is a remarkable condition. It's remarkable because it's been present for so many years. And yet there's such little recognition for it. It's remarkable because it affects virtually every system of the body. And patients go to different specialties, and yet no one puts it together. And it's remarkable how debilitating it is for the sufferer, yet how invisible it is to the outsider. And so in those sense, it's remarkable but it's also remarkable because I think it affects remarkable people. And I think the people who are listening to this who are struggling, should remember that that. You know it takes great resilience to put up with all this and still keep going, it takes great resilience to feel broken every day and yet refuse to break. And it is this resilience that will see us through this

Jackie Baxter 
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 the 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