POTS in Long Covid | Treatment and Management - With Dr Nick Gall

one of the unpleasant bedfellows of dysautonomia is pots or postural orthostatic tachycardia syndrome in this episode five of our expert interview series dr assad khan and i talked to cardiology consultant dr nick gall one of the uk's leading experts on the condition there's actually a huge amount to cover in this topic so it's quite a long interview but one that could be incredibly helpful for those of you out there for whom the condition is making life a bit of a misery so if you need to perhaps watch it in chunks otherwise hope you enjoy so thanks for joining us uh nick incredibly kind of you um i was wondering if first of all you could just tell us a little bit about your clinical background okay um well thank you very much for for inviting me um so i'm a consultant cardiologist at king's college hospital in london uh so my my training is in cardiology and then i trained as a as a heart rhythm expert so so right at the start of my uh my practice it was mostly involving managing um brady and tacky arrhythmias ablations pacing complex devices and so forth um but then i began to become more interested in collapse and blackouts um which then led me on to seeing patients uh with pots and i suppose i've been seeing patients with pots now for 15 16 17 years and because there's a as an interesting overlap between cardiology and neurology and what what was clear then which i think is probably clear now is that there aren't that many people who are interested in it and so it felt that it would be worthwhile sort of developing um our process at kings to manage that and essentially um i've progressed from seeing one or two patients a month to um four clinics a week um trying to keep on top of the uh the the pots and dysautonomia patients that are around in the uk um and how surprised were you that uh the you know the coronavirus pandemic has led to this sudden wave of patients have suffered an infection and are now suffering from various forms of dysautonomia and pots is this something that you would have expected um an interesting question i i mean i suppose that the short answer is yes and no um so when we talk to potts patients a lot of people will say all of my symptoms began after some sort of immune insult and that might be a vaccination um for some but but for a lot of people it's a viral illness and up until this point glandular fever has been the communist um so so we certainly hear that story very frequently um that a viral illness can produce it but i think what has been surprising with all of this is is just how many people are presenting with um with pots or appear to be presented with pots associated with kovitz now whether that is because the virus has uh has something about it that will uh induce pots or whether this is just the fact that it's a novel virus and therefore there are an awful lot of people um you know who are being exposed to it in one go i i don't know that we know um so nick what is um the range of cardiac complications that you're seeing with long covered um um you will you'll have to realize that that i i am an incredibly biased sample so people um refer to me to consider pots uh they don't refer to me to consider long covet and they don't refer to me to consider myocarditis so so i was i'm certainly seeing a lot of people who have developed cardiovascular dysregulation um a number of cardiovascular symptoms after covid and then we are investigating for pots um i haven't see i've seen a few people who have clearly had a cardiac mri scan who've got a diagnosis of myocarditis um but i'm really not the the right sort of person who is being referred um myocarditis patients so so exactly how common that is uh i i don't i don't know and and i suspect only time will tell what are the range of symptoms that the patients are presenting to you with um so so it's that they're very so i suppose in general when somebody comes to me with pots it's cardiovascular dysregulation so so it sounds like a heart problem uh so there will be chest tightness um often associated with breathlessness usually this is to do with activity or being um stood up right um there will be breathlessness and its breathlessness on exertion and often breathlessness that i can't quite get enough air in there isn't quite enough air around so it's so something that i think we've come to recognize as as rather typical of dysfunctional breeding uh lots of palpitation but again fast regular when i'm doing activity everything seems to be faster than it should be it slows down too slowly it slows down gradually and then dizzy spells and and faintness so so again faintness standing up relieved by lying flat uh some some risk of um fainting and losing consciousness but what and and those are very typical pot symptoms what again we're recognizing is that um as with normal pots patients it is um often it's a dysregulatory process that affects the the rest of the body so there will be many who are describing migraines many are describing bowel disturbance of some form sickness vomiting bloating constipation diarrhea some are describing bladder dysfunction some are describing neuropathic features um so there's a vast range which don't necessarily feel like they should all link up unless you think that this is some abnormality in the regulation of the autonomic nervous system and then it seems to be uh then it all seems to fit together um yeah you've described my symptoms to achieve basically so the breathlessness felt exactly like i couldn't get a deep enough breath in and um i think prior to becoming more aware of uh dysautonomia that was one of the symptoms when i would see patients with respiratory clinic and think i don't know what's going on here everyone this is even organic but it definitely is and there's no other way of describing it can i just ask you then along those lines what is the mechanism of the coat tangent discomfort that some people describe in this condition and interestingly some people have reported feeling a similar sensation in the abdomen and it seems to move um exact location as well what is actually going on there um i i i would suspect that the the easy answer is that nobody knows um because there's a really people haven't taken a lot of these symptoms very seriously so so the classical coat hanger headache of neck and discomfort across the shoulders is said to occur um classically with orthostatic hypotension um and it is said that it's the large muscles in the back and the neck which we use for to to maintain our posture that become ischemic so as the blood pressure drops those muscles become ischemic um and then they they ache and then when patients lie flat um they they get their blood supply back again and um uh that those symptoms improve um a lot of um the other sort of associated symptoms um many patients will describe as pooling uh and people will will say whenever i stand up i get this odd sensation in my legs they ache they feel full they feel uncomfortable um similarly people may get it in in the abdomen um whether truly actually it is blood that is accumulating and therefore it's a it's a stretch phenomenon i don't know certainly one review article i read about why pop's patients get purple feet was that it wasn't the accumulation of venous blood it was blood being sucked out of the skin so it's the skin becoming relatively ischemic um but you know that there's there's i mean my understanding is that there is very little understanding of it um and but but and um it's just one of those things that is difficult to pin down but the more pots patients you talk to the more they all describe it or not all that describe it but but a number of people will describe that group of symptoms and i was just wondering in terms of the the presentation of these symptoms just how disabling they are what kind of impacts are these symptoms having on people's lives the sort of the patients who are being referred to sure um there is a huge range um and i think this is one of the problems with with pots per se is that when they defined it as a condition they didn't really understand what it was we still don't really understand what it is so it was very specifically defined as a heart rate increase on standing of 30 um which was purely based on statistics it was a two standard deviations away from the mean so essentially it was defined very specifically but in fact what we see is a large range a continuum of patients who have these groups groups of symptoms whether they're postcovered or not and so there are people um who are potsy um who may be hypomobile who have put up with their symptoms just say well you know i feel a little bit limited on exercise i don't like standing in queues i've always exercised by swimming and i just don't go running because i'm rubbish at running whereas actually when you delve in you realize that it's it's the dysregulation of their system that's the problem but then that's the and there's probably a very large number of people out there um younger women particularly who are just putting up with those symptoms and just thought oh i thought this was normal but then you can take that all the way to the end to people who are uh often labeled as chronic fatigue syndrome um who are disabled in bed they haven't got out of bed for five years uh they essentially are are lying in a bed in a dark room uh unable to move because their symptoms are so uh significant and because it's um because it can link in with hypermobility in some because it can be um associated with abnormalities in the autonomic control of different organ systems there may be people who are profoundly affected by fatigue there may be people who whose gut really has stopped working so they're on tpn or they're being peg fed and there are those who are who are um affected by the pot so they just can't get up without feeling faint yeah i mean that certainly seems very consistent with what we're seeing with long code but there is this huge range of dissociation there's a spectrum if you like of people who have i think it almost seems like everybody with long covered has some degree of dysautonomia going on and some of them may just not have identified it through to the people for whom it's utterly disabling um i've got i've got one question that's kind of in two parts here and that is um what does the science say about this you know dysfunction of the autonomic system after a viral infection and the other part of it is what do you think is actually going on in the body after a covered infection the the mechanism of disease if you like for dysautonomia and long covered so is there a gap between what the science says and what you think is going on simply because it hasn't caught up yet right uh yeah well i think i think that's i think that's very true i i'm my my understanding of the the sort of the post covid long covered pots is that the literature revolves around us a few small series of patients and single case studies so so i uh as far as i'm aware i don't know that anybody understands it um there are a number of review articles out there and there's some basic science that has been uh undertaken to look at pots in general um and and you can you can find those um satish raj um is a professor of cardiology and autonomics in calgary is um you know major experts and if if somebody wanted to look for you know the current review articles um you know then then search for him on pubmed and uh and you'll find something so so there are lit there are small studies that look at um volume regulation and showing that the volume regulation in the kidneys may be abnormal there are small studies showing that vascular regulation and nitric oxide synthesis synthase is abnormal there are small studies that are showing uh abnormalities in small nerve fiber function um so there's there's little bits out there that are sort of suggesting for some people it's an abnormality in heart rate control for some people it's a failure of blood vessels to tighten for some people it's an abnormality in in in heart rate control now what's um we have a neurophysiologist at kings um who uh can do physiological assessments of small nerve fibers and it seems that small nerve fibers are quite difficult to study but these are the pain fibers and the these are the autonomic control system fibers as far as i understand it and of course remembering i'm a cardiologist and not a neurologist so but what you know we do hear a lot of neuropathic symptoms to a cardiologist um and and he's been measuring these small nerve fibers and finding that they're abnormal and then we've been sending patients off to our peripheral nerve neurologist and they're saying yes you have a peripheral um you have a small fiber peripheral neuropathy um and you know so what is increasingly clear that is there is some suggestion that a proportion of pots patients have a small fiber neuropathy and that it's these little small fibers that are going to the blood vessels and failing to vasoconstrict and then that gives boxiness uh and then they will also be the ones that go into the gut or to the bladder um you know or to the skin and then produce the the sort of the pain um that we see because there is um this recurring story of um i was fine then i became ill with a viral illness a chronic infection there is certainly discussions in the pots literature to say this sounds like it's an autoimmune condition and there's certainly some research out there looking at various auto antibodies although to date as far as i'm aware there isn't a single auto antibody it's just there's lots of auto antibodies out there that seem to be positive so i suppose you know the way that i'm starting to think about this is you know are we likely to find out that what this is is an autoimmune viral induced small fiber neuropathy that has damaged all these little nerve fibers and that that's why patients are having all of these these symptoms um whether that's whether that's true or not whether that that applies to everybody i i don't think we know and then somewhere in this there's then seems to also be a link to histamine uh and again there's there's there's recurring themes from normal post patients but also long covered patients of descriptions of um i've suddenly become allergic i'm suddenly inflamed um i'm getting strange itchy rashes and that sort of thing and i feel strangely better on antihistamines um and uh and again there's there's there seems to be an association um associated with pots um in the in the form of muscle activation syndrome uh where patients feel better on histamine antihistamines um how it all links up together uh i don't think anybody knows and really the up until you know this point master activation and the histamine issues has very much been a um an uh controversial area as to whether it actually exists or not um but we're hearing the stories people seem to be getting better with uh with antihistamines so there's there's something in it absolutely and i think what you've said is going to be incredibly validating for a lot of the people watching this video because this is what they're saying they've suddenly become allergic they've suddenly developed urticaria um and various sort of food intolerances uh and that coincides with the onset of all these other symptoms um and what's interesting is that there's anecdotal stories of patients being put on steroids probably because the urticaria was so bad and everything else seemed to settle down um including the tachycardia including uh the cotangent sensation so if this is gonna probably turn out to be autoimmune um you know as as we think and as you've suggested um so on the topic of what's in general before um long covered was identified which sorts of patients were you seeing the condition in so so in general um it it on average this is a young person's condition uh and mostly a young woman's condition so so i suppose 80 85 of our patients are female and and the the classical patient is is between 15 and 35 um with often with some history of uh of hypermobility beforehand uh and then symptoms being precipitated in fact there's often two different groups of patients there's there seems to be the they seem to be mildly hyper mobile or not hypermobile at all but they've had a significant immune insult then they developed pots or more perhaps more significant type of mobility um and they don't necessarily feel that they need to have the immune insult it's the hypermobility that has as associated with it so that would be the classic patients we we as i say you know as a smaller number of our patients are male and there doesn't seem to be anything necessarily different about about the boys than the girls as it were um it it it's an interesting area that um for for years potts has been controversial um it doesn't exist uh it's made up by private cardiologists um was often what we would hear i mean now we have international guidelines from the heart rhythm society it's mentioned in the european cabinet society guidelines for syncope the canadian cardiovascular society have produced guidance it's it's very difficult these days i i think for for many people to deny the pots deniers that it that it doesn't exist but but interestingly what however that what that has led to is that now everybody associates every autonomic problem as being pots so so if it sounds autonomic we that we then get referrals for it and you will realize that you know the reason for that is that um there are so few autonomic neurologists dealing with autonomic failure um there are so few cardiologists who have an interest in the dysregulatory processes um you know when when any of these sorts of things come up patients are are referred and often i think this patient's got pots um you know so we may get referrals for you know for 60 year old men who who i think this patient's got pots um obviously there are a smaller number of those who have had pots since they were 15 and just you know it's sort of continued um but but people are now using pots as a as a label for all things dysautonomic and and obviously the the the later onset um you know we then have to start thinking about the more significant forms of autonomic dysfunction relating to other neuropathies or degenerative conditions and obviously those people need to go and see autonomic neurology um so how how did you treat people who were presenting with sort of dysautonomic and pots like symptoms um was it different for general dysautonomia versus pots in terms of the cancer treatments uh this is before covered came along and is it the same now with your long covered patients and how effective are those treatments um so so i suppose um that the management of of potts patients it actually is very different or is very is very different around the world so if you if you go to different people you will get different opinions um and so you have to work you have to realize that how i manage pots is different and that's just because it's you know this is what i developed over 16 or 17 years as to what seems to work so um and it's and it's very cardiological focus so so our management is make sure we're not missing a heart problem with echo halter cardiopulmonary exercise test tilt um blood test to make sure we're not missing things like thyroid dysfunction addison's listen to the patients obviously and then if they have symptoms in other territories so if there are bowel symptoms bladder symptoms headache sleep disturbance joint problems try to find a clinician who is interested in that area um who can help them with those symptoms and and sometimes that is easier than with certain symptoms than others you know we have been lucky enough to find clinicians often are in and around london who have an interest um in say the regulation of the the neural regulation of the bladder so then if you have bladder problems our patients are very well served by those reviews um if we work on the principle that this is dysregulation in the cardiovascular symptom when it's system when it comes to pots it's the blood volume is too small the blood vessels don't tighten up um the heart rate's too fast so therefore the management then of of that those cardiovascular system symptoms is deal with those things so it's fill up the blood vessels build up the blood volume drink more fluid add more salt um and we've used a 24-hour urine collection for sodium and volume excretion to guide us there's a tiny amount in the literature suggesting that we should be seeing more than 170 millimoles over 24 hours of sodium excretion so we try to um gauge it um failure of blood vessels to tighten um so compression clothing sports compression leggings um obviously the literature says sports um says compression types grade two um the reason that i don't tend to um prescribe those particularly is partly nobody or a lot of people don't necessarily know how to prescribe compression tights often people then get into discussions about but you need to see a vascular surgeon to agree that you can wear compression types even though this is a 17 year old woman um and then the third thing is there's there's actually very few patients that i've ever come across who actually want to wear compression types um when they've seen them so the sports compression leggings as a compromise do often provide um you know patients they're more acceptable for patients um exercise seems to be very important and there's there is you know some date in the literature from particularly from ben levine in dallas so it's small amounts of horizontal cardiovascular exercise rowing recumbent cycling swimming gradually increased so what we hope is that people are all going to be doing as much of all of that as we possibly can um respiratory physiotherapy seems to be very helpful for the breathing pattern um and and our colleagues at king's have published their experience of that uh and then it's really a question of saying if we need to do more what seems to be the physiology is the heart's too fast the blood volume's too small and the blood vessels don't tighten up so if it's too fast slow it down with beta blockers and or if abradine and or paradise dig mean but different people respond in different ways to different drugs i've got no idea why but they do uh and so you you i i take a very organized view start tiny beta blocker gradually build it up if it helps great if that doesn't work we try babradine if that doesn't work we try pirated stigma vasoconstrictor midadrin often very effective in pots start small build up um blood volume too small salt tablets fluid cortisone up to 200 micrograms a day and essentially i i work my way through those and people try them for a few weeks they seem to work quickly um other people try different things so desmopressing um for water retention clonidine um you know is tried that there is there are some other more serious vasa constrictors like octreotide and droxy dopa these aren't commonly prescribed i have colleagues in and around london who are expert in their use and so so we we tend to then rely on those but but actually for most people um they seem to respond very well to um to some combination of all of those um with the antihistamines it's very difficult because there are so few people to ask um so i tend to be very empiric and just say have an h1 and an h2 blocker you know any citizen loretta dean flexophenidine with one of the h2 blockers in standard doses and so to say if you feel better after over a month great now obviously there are one or two clinicians out there who have greater expertise and may be adding ketotifen and montelucast andrew patadine and sodium chromoglycate but i have to say that i i'm not particularly experienced in their prescription and um you know even things like oral sodium chroma glycator are really quite restricted in in who can prescribe so um so that that side of things is more challenging but uh you know we we try to if it seems to be a big issue we try to find colleagues the urticaria clinic at st thomas's for instance if that's a big issue um to to um really to just to to work our way through in an organized fashion these medications um in terms of of post-covered covered pots gold knows uh as they say because you know so i mean my view has been to say to be very open with with patients and say i don't think we know we will just have to treat your postcovid pots as we treat every other pots patient and hope that the the same um the same physiology applies in the same um processes applied to treatment i it seems in at least some people and obviously our experience is very very much in the early stages that the same problems uh occur and the same principles apply but time will help thank you thank you um i mean touching on that sort of difficulty in um people accessing the right care uh because there really is no standardization um there are still huge gaps in awareness amongst um our colleagues and i was recently contacted by a patient um on social media saying that they had done a test themselves at home so they'd done an active stand test um and it was positive um because they had the requisite rise in heart rate and they took it to the to their gp who then referred them on to a cardiologist um after instituting some um sort of conservative measures and then the cardiologist said and i found this hard to believe that because there wasn't a postural drop this was not dysautonomia now clearly that's not required for a pos diagnosis but this isn't the first story i've heard of this nature and given these gaps in awareness both sort of at a primary care and secondary care level what is it that patients can do to advocate better for themselves um i i suspect that the the way to the way to deal with that side of things is that there is medical literature out there there are guidelines out there so as i say the heart rhythm society in 2015 produced pots guidance uh they're the latest canadian cardiovascular society consensus statement published last year um or perhaps early this year uh has details um my colleagues have put together um a lot of information on the um so the spotlight on syncope for the royal college of general practitioners and potts is mentioned in that um it's cox is mentioned in the european society of cardiology guidelines on syncope so i suppose the um the the way to deal with it for patients is is to say look there are guidelines out there they're all freely available on the internet um and potentially to to actually you know print it out take it along say look here is the information um you know we we obviously try i work very closely with the potts uk charity as you know um and they they are doing huge amounts of work to get um to get it out there um we we we do lots of talks at heart rhythm we do it i've been lucky enough to do you know talks at the british cardiovascular society um you know so so so there's lots of information out there there's lots of people pushing the message but uh but i think and there's there's good patient information on the pots uk website so so i think often it is a question of of patients printing out that information taking it along to their um i mean these days taking it along metaphorically to their zoomer meeting with their physician and saying look it does exist you need to realize that this is not made up and the this is exactly what's going on and you need to investigate and refer yeah i think that's incredibly helpful yeah because people are going to be waiting a long time to get referred to there's so few specialists that i mean even being able to be referred to one is very difficult and if they do manage to get onto your referral list you know i don't know how long the wait time is to get an appointment with you um you know so i think you know just i guess that leads into another question for me which is um alternative uh therapies for this which might include things like mindfulness and breath work to help calm down that sympathetic over response things like maybe acupuncture or cranial osteopathy do you see any of your patients um doing any of these sorts of treatments uh do they seem to be helpful can you see a a way in which they might be or a logic in which they might be um so um so we have lots of patients who will try many different things to try to make a difference um i mean the the breath work you describe obviously we don't know why uh potts patients have dysregulated breathing uh we are absolutely of uh the view that it is not an anxiety phenomenon um so so you know that and as i say our our respiratory physiotherapists at kings have have published their experience on it so so so that side of things i think is is fairly clear um that that is going to be something that is helpful um from the perspective of of acupuncture and craniology cranial osteopathy and other things i i would have to say i am not familiar enough with um the the scientific basis of those to be able to say you know how how they would help but there is no doubt that you know a number of our patients say i have used this and and it has been very helpful great um mindfulness i mean obviously um there is um this is a very difficult potentially unpleasant set of conditions um and being able to cope with all of it and the management of it i think is very important and certainly um many of our patients have found great benefit from clinical psychology input and mindfulness and cbt but but very much on the basis of um managing the the the condition and how i manage the condition and does this help me feel better and how can i cope with this or rather than [Music] the the sort of the older idea that therefore if i'm getting involved in these sorts of therapies therefore it is all psychological and therefore all i you know require is getting to the madness within and then you'll find out that i am mad and okay right now i can be treated which was a very old idea i mean what we what we realized is there's such a uh you know a clear mind-body link uh and managing the whole of the the patient's system is important you know so so i i think an awful lot of our patients find that sort of approach extremely beneficial but again i mean that that can be extremely difficult to access yeah true certainly there's no um public sector provision for these things uh at all um and um you alluded to anxiety um and uh uh i'm also glad that you've specifically said that this was not anxiety and i think patients will find that very useful to hear and very validating and i'm also glad that you mentioned right fatigue syndrome any where cfs feels a misnomer it's an organic condition where you do get pots and you know there's a spectrum within that where you know you've got patients who are tube fed and then you have got patients who may solely have the fatigue so i think a lot of patients will find that very useful to hear but still there are multiple instances of uh people being told by the doctors um be their ed physicians that they're for example their psychotic cardio anxiety and um and i've had colleagues medical colleagues who've been sent home with heart rates of 140 150 um and have been told that that's anxiety when they've clearly had covet and that's precipitated it um i mean in the absence of sepsis or hyperthyroidism or other such conditions which might be driving tachycardia and how high would you accept the sinus like kaby as being literally anxiety i appreciate there's no different answer to this but there has to be some kind of reason here where you say actually that's ridiculous you know you can't attribute that to anxiety um i i suspect i mean the short answer is i have absolutely no idea um i i you know in the end i would suspect that there probably isn't an upper limit um to to how fast the heart can go in um in situations of anxiety but but i think i think the the the i suppose my i totally agree with what you say there are a huge number of people where the the symptoms are uh are put down to anxiety and often because the because of the demographic there does seem to be this general feeling out there that um young women are all always anxious uh all the time for their entire lives and so there's therefore very easy um to label people um i i think that that what what people need to do is to be very aware that there is a lot more to anxiety and the diagnosis of anxiety than just a heart rate you know we have all seen patients and you know maybe even family members or friends who are anxious they are not anxious just with a heart rate they look anxious for other reasons and so so i think i think the diagnosis you know has to has to be based on more than than than just a fast heart rate um and you know i mean what's interesting you know there's there's a small amount of literature in pots you know our pots patients do they have more major psychiatric problems than other parts of the other groups in the population and the answer is no but when psychologists have done studies to say we're going to use a questionnaire to find out whether you're anxious that involves both physical and psychological symptoms they sound anxious when they do when they use questionnaires that just are basing the diagnosis as far as i understand it on the psychological symptoms of anxiety they're not more anxious than anybody else so so i i i don't know that there's an absolute number but i think there has to be you know if you've got a young person in front of you with a heart rate of 170 or 160 um and you're wanting to say to them i think you're anxious they're not going to be lying there or sitting up there looking absolutely chilled but saying isn't it interesting my heart's going quite fast they're going to look at they're going to look very very different and and i think i think i think so so i think you have to look at the whole patient in the context of the of the heart rate absolutely um so i think i've got a question about the prognosis um that you sort of haven't we all unfortunately so um i'd love to know i mean so so i guess two parts to this question and the first is um is if someone presented to you with ebv or or prior ebv and they now had some form of pots or dysautonomia that was perhaps in the middle of this spectrum that we have described what sort of prognosis would you perhaps offer them and the second part of the question is how many of your long-covered patients that you've seen over the last number of months do seem to be getting better and is there anything that you can draw any kind of conclusions from there about what the prognosis might be for long covered uh instigated dysautonomia um so so i suppose to take the um [Music] to take the last question first um the the short answer is i don't know there are there are clearly people who are improving uh with long-covered pots um and a noting is a slow and gradual improvement um and then there are others who aren't noticing an improvement um i would also have to say that for the standard pots patient i never give a prognosis um because because too often people will come to see me and say um i went to see and so see so-and-so and they said it would all i would grow out of it but i'm now 25 and i haven't grown out of it or it would all be better in two years well it's two years on and i haven't got any better um and so i think that it's i think that it's extremely dangerous to to try to put a label on it um i think that there is there are an awful lot of people who do get an awful lot better with pots uh frankly you know i i i wouldn't i wouldn't get involved in it if it was all going to be incredibly depressing and nobody were and nobody was improving um partly but you know you know you know cardiologists we're all mad crazed axe murderers so you know we want to we want to see that people improve we want to do things to make people better um i mean but but i think that it's it's often it's often not a com it's not a thing that i do just solely um i think that that some of it gets better on its own some of it gets better with what we do um and and a lot of it gets better with what the patient does um and and you know so some of that will be having an understanding of the condition and why it gets worse and won't get better and what you have to do to keep yourself well um and what what you mustn't do because it makes things worse and then it's having this very organized process of trying to improve the cardiovascular side but also dealing with all of these other options so so a a lot of people do get better but it's a slow business and it's often it requires this organized multidisciplinary management or that's my impression you know i mean obviously i have absolutely no data to prove that that is the right way of managing it but but it but it does seem to work for a lot of people okay thank you um so both judge and yourself have um alluded to the poor city of people with an interest in uh pots in particular this autonomy in general and given that and given that um certainly in the public sector patients could be waiting a very very long time to access a specialist um i don't know what sense you have of at what level gps are prepared to prescribe at certainly anecdotally what i've found is that they will prescribe beta blockers suggest conservative measures which normally patients have worked out themselves yeah and then stop and then the patient doesn't get on top of abradine for example um when the beta blockers clearly aren't working around tolerated um and i appreciate again there's no straightforward answer to this but in primary care what sort of um feeling of therapy therapeutic trial would you be happy with um and how how sort of difficult or risky are these drugs so um i i suspect that there's that they will be different there'll be differences in different um areas different ccgs will have different thoughts i i've certainly come across a wide range of um experience and opinion in primary care there are some um primary care colleagues who are extremely um happy will review the literature and actually will have have even tried things like mediadrin and if aberdeen but potentially because they already have experience or they've seen patients with it and they've gained some confidence and are just desperate to do something for the patient in front of them um there are certainly some primary care groups where things like if aberdeen and midadrien are absolutely off the agenda we will never prescribe this uh at any point um and it will always have to come from the hospital um there are others where where they will take on those prescriptions under guidance um uh what i would i would say is um if we're if we're generally happy that we have excluded sinister or either sinister or um important things like thyroid dysfunction addison's um you can use the 24-hour urine collection to guide how well-hydrated somebody is um adding salt tablets and and i use salt tablets um very frequently as my first line um and people get a little bit confused oh but their sodium levels are normal in the plasma um you know they've got normal blood pressure all salt tablets are is a way of guaranteeing how much salt the patient gets into their diet so it's just a way of saying have more salts because if we just say i want you to add more salt to your diet you add more salt to your diet but no neither of us know actually how much is being added and is that enough so so salt tablets are very very easy to prescribe they have no monitoring and all of these um these interventions seem to work very very quickly you know if somebody's noticed it going to notice a difference they're going to notice a difference in a few days in a few weeks you're not having to do it for months beta blockers again very easily prescribed propranolol often is favored in the pots world but often because there's such an overlap with migraine um uh there's there's a you can get two um sort of two benefits from it we often start at 10 milligrams a day and then slowly build up from there um flu to cortisone 100 to 200 micrograms a day those i would suspect you know that's those are my essentially first three line treatments and all of them can be prescribed together and i'd suspect i would hope that there's a lot of experience in primary care with those particular medications to realize actually these aren't particularly dangerous um and i can add all of them together and if by adding them all up it makes a difference and that's great similarly with the antihistamines that we mentioned earlier you know cetirizine and symmetry you know cetirazine and fermotadine on dissatidine or whatever so i would hope that you know for a lot of people their their their primary care physician could say look i'll have a go with some of these um for if you get referred to the general cardiology and i suspect that this is going to where people will have to go they're not all going to be able to queue up you know i i think in in discussions you know people said 1.1 million patients in the uk with long coverage that's quite a long waiting list for me um which is already quite prolonged as it is you know people are going to have to end up in cardiology and cardiologists are generally familiar with everything um so so it may be that the process for this is simply making sure that we're not missing something recognizing the symptoms and in primary care trying the simple therapies which you can work through fairly quickly and then simply with general cardiology trying if aberdeen and then you know leaving some of the the sort of the more complex nuanced medications where there's much less familiarity like midadren like paradise stigma etc you know to to the clinics where we're using it all day every day but other people aren't thank you um can i put you on the spot a little bit please uh nick if you could commission if you had infinite resources and you could commission a study of your choice and design into something connected to dysautonomia pots and long covid what would you really like to find out um i have so many studies um i suppose um yeah it wouldn't actually be a study it would be a project a project system to be honest you know what um i i suppose one part of it is um we have this feeling that what we do but also what is done at bart's and at queen's square and you know at the hammersmith and the brompton and in sheffield and in newcastle and in bristol you know so there's lots of colleagues around the country who are doing certain amounts of things the the what we do seems to provide benefit so one part of it is to say we we've already been doing it to some extent at king's and saying we've taken 100 people where we've done cardiopulmonary exercise testing and look at our data isn't it interesting my colleagues recently have looked at 100 patients with their bladder disturbance isn't it interesting they've all got neuropathic bladders so you know one part of the study would be to say look i'm seeing 500 pops patients a year look at that data we investigate them in exactly the same way collect all that information collect retrospectively and then prospectively what we do and let's see if we are doing what we think we're doing and is it helping um so that would be one one part of the study a second part of it would be very simplistic studies you know there's satish raj has has produced a small study looking at salt tablets uh or salt supplementation and showing that patients feel better we've got hundreds of people that we put salt tablets on it shouldn't be very difficult to do big studies to say um you know if you've got pots postcoded or not does do sole tablets make a difference do it does midi drink make a difference because there's some you know he's he's done that there's a small study in hyper adrenergic pots published in jack of about 20 people within aberdeen um most of the rest of the the the medication studies are tilt based studies where we gave you a drug we stood you up and we tried to see whether you that made a difference so it shouldn't be difficult to do these very simple placebo-controlled trials to to show that people feel that you know that it makes a difference so to just validate what we're doing so that we you can you can provide it um is it some understanding that that it's not just that the we've all made this up um and then it's it's taking it further forward you know we have this as i say we've we're just putting together um a group of patients that we've looked at with a small fiber neuropathy um there's little bits of data out there about about the vascular endothelial function it would be having having project grants to say we need to look at this more fiber neuropathy story more formally to actually say if we if sympathetic micro neurography is the way to assess it is biopsy the way to assess it what other syst what other tests do you need to do are we actually finding this so so actually what what what it requires is a is a whole system of saying we've got hints about what's going on we need to organize it and investigate it in in an organized fashion yeah thank you thank you i'm very conscious that i've taken nearly an hour of your time so very quickly apart from pots in the context of long covert are there other autonomic system disturbances that clinicians and patients need to be aware of um so well i mean it's it it will be this regulation in every part of the body so so we as i say we've seen lots of patients with with significant migraines the the migraine treatment is is the treatment for migraines it just needs to be treated that patients need to be listened to um we've got patients with abdominal dysfunction we've got patients with with bladder dysfunction we've got patients with their their pain and joint dysfunction so i i think it's it's really a question of recognizing that all of these symptoms do fit together and there are a small number of clinicians out there who recognize the the abnormalities in the nerve control of hormone systems can produce as many symptoms and even more troublesome symptoms as more structural abnormalities and that these need to be taken seriously and managed uh appropriately yeah i mean absolutely listening to the patient it's so key uh i don't have any further questions i wonder if you do uh i have one question which you can answer quickly maybe uh which is if there was one piece of advice you could give to somebody who's struggling to get uh their primary care um you know gp or whatever to help them or they've maybe just realized that they've got pots and they've been suffering what is the one thing that maybe they can do that might help them the thing to do is to say take ownership of it you know so there's there's a lot of there's a lot of information out there that we've already discussed so there's there's um lots of guidance um from the medical organizations both the uk and abroad there is lots of patient information so there's lots of patient information on the pops uk website there's information on stars so the national blackout charity so they've got some excellent information there's information on nhs choices i i think the the the what it is it's a question of saying this is real um get that information do the simple stuff obsessively well um that that is is there on pots uk and stars but then take that information to um to your gp and do not take no for an answer i have this i want to be referred um you know refer me to local cardiology refer me to you know local neurology refer me to whoever it happens to be um and you just keep going and you keep banging on about it until it becomes easier to say all right then i'll refer you rather than to be fogged off don't don't don't be fogged off i think is the the the short shorts absolutely and that's it's so important so important because um we have this tendency and i've come across this and so have so many other patients where if it doesn't fit a familiar pattern it's in the head and we have to we have to fight that because otherwise we're going to miss these important conditions so a big thank you from me uh because you know this has been amazing and extremely powerful hand over to jose for fine words uh i just want to say thank you hugely as well i mean the reach um hopefully this will have to a huge number of people who are suffering and the ability uh it's almost like you know an hour of your time here can help thousands of people hopefully who can watch this all over the world so you know you might not be able to see them all personally but hopefully your expertise is helping them in uh in some way so thank you hugely well you're very welcome thank you very much for asking me and i hope it's helpful but of course the other thing about this new condition because we're not we're you know it's poorly studied is is most of what i've said could be complete rubbish it may all be entirely untrue in five years but the more we talk about it the more people take it seriously the more we are likely to find the answers rather than as you say if i don't under understand your symptoms you're mad yeah absolutely absolutely thank you so much

Channel: Gez Medinger

Views: 35,304

Keywords: pasc, psac, post covid, syndrome, dysautonomia, long covidf, long covid

Id: TtF0tSHXRjs

Length: 57min 39sec (3459 seconds)

Published: Tue Jun 29 2021