<small>Go back to transcript catalogue: [[Video Transcripts]]</small> -------------- [Non-Pharmacological Treatment of POTS](https://www.youtube.com/watch?v=nt3o_z1_gII&list=PLN9-2-rvxt7OEhQVjBOndedhcKEpCJGzF&index=74) <small>Webinar (Dysautonomia International Virtual Conference, 2020) | 1:00:36 h</small> ------------- [02:37](https://youtu.be/nt3o_z1_gII?t=157)  [05:25](https://youtu.be/nt3o_z1_gII?t=325)  ## History [07:11](https://youtu.be/nt3o_z1_gII?t=431)  I was wondering, back in the 18th/19th century, when there was no molecular medicine, X-rays or CT scans available, how conditions such as POTS were treated, since the availability of drugs was scarce and patients were largely reliant on non-pharmacological approaches. What, at the time, was described as Neurasthenia had similar manifestations to POTS. It being "the most neglected nervous disease of modern times" still, unfortunately, holds true, for the latter. [07:17](https://youtu.be/nt3o_z1_gII?t=437)  The doctor spearheading the treatment of Neurasthenia at the time was a very big fan of electrical treatment and published his findings in papers, that, even today, remain prominent. Obviously, today, such a recommendation wouldn't be given the time of day in any serious piece of medical literature. ## Setting Goals [08:43](https://youtu.be/nt3o_z1_gII?t=523)  Naturally, in terms of research, our goal is to cure POTS, but that may not occur for another couple of years, if at all. So our goal here is the treatment of symptoms. When it comes to drugs, you don't really have to understand the intricacy of the molecular mechanisms surrounding their functioning - the consumption of exact doses, that have been determined and prescribed by your doctors will typically suffice. Now, it is, unfortunately, not as simple when it comes to non-pharmacological treatment. You really have to understand why we are doing what intervention, otherwise it doesn't work, since it must be eventually integrated into the patient's lifestyle. It's important to set clear and practical goals that're somewhat measurable, so we know where we are at in terms of our treatment. [11:08](https://youtu.be/nt3o_z1_gII?t=668)  Especially with non-pharmacological treatments, the methods must be tailored to the individual needs and specifications and take into account the personal degree of exercise (in-)tolerance any given patient might have. [12:22](https://youtu.be/nt3o_z1_gII?t=742)  Many of my patients used to be physically adept and active (Baseline), but experienced a sudden decline in their performance, due to the onset of POTS, which comes with an array of debilitating symptoms (↓). The first step to determining the goal is to identify the main culprits, within this spectrum of symptoms that contribute to the patient's debilitation, and, based on what degree of functionality you aim to regain or shoot for (whether it be simply enjoying going for a walk again or even pursuing more ambitious active lifestyles), formulate a theoretical framework with an established plan to achieve these goals (Therapeutic goal). [15:10](https://youtu.be/nt3o_z1_gII?t=910)  It's best for the goal to be practical and measurable - start with minor improvements and, once it's achieved, readjust and augment your goals little by little going forward. To establish a treatment plan, the larger question will be structured around a theoretical or conceptual framework of how the symptoms of POTS manifest in the first place. ## Theoretical Framework [18:43](https://youtu.be/nt3o_z1_gII?t=1123)  There are still a lot of different theories about POTS. We still don't fully understand the pathophysiology and etiology of POTS (autoimmunity, genetics, etc.). Since it's not a single disease, but rather a heterogenous clinical syndrome, there are a number of different pathophysiologies contributing to POTS. Since I'm a neuromuscular doctor, I like to view POTS through a more nerve-and-muscle related angle. Unless you're bleeding all the time, your total blood volume remains the same. However, our nervous system, particularly the Autonomic Nervous System, controls our blood volume in different parts of our body, depending on our activity. So, for example, if you're running or using your muscle, then that's the target area that the increase of blood-flow will be directed at. If you're thinking, you need to increase your blood-flow to your brain. If you're switching from a supine position to an upright position, you need to have the blood-volume, that suddenly shifted downwards, due to the pull of gravity, be pumped upstream. [18:50](https://youtu.be/nt3o_z1_gII?t=1130)  [19:35](https://youtu.be/nt3o_z1_gII?t=1175)  Baroreceptor Reflex: Our nervous system can detect the pump failure and tries to compensate it by increasing a set of chemicals such as epinephrine and norepinephrine (adrenaline, noradrenaline) via the sympathetic nervous activation, unfortunately inducing a fight or flight reaction, generating another set of symptoms, that can be equally debilitating. [20:47](https://youtu.be/nt3o_z1_gII?t=1247)  [20:54](https://youtu.be/nt3o_z1_gII?t=1254)  The "Pump Failure" comes from **sympathetic disfunction**. At the same time, there's a Sympathetic Overcompensation or **sympathetic hyperfunction** - basically, opposite ends of the same nervous system. So I view POTS overall as a paradoxical sympathetic disfunction. [22:49](https://youtu.be/nt3o_z1_gII?t=1369)  ## Principles of Treatment [23:17](https://youtu.be/nt3o_z1_gII?t=1397)  ### Volume Expansion [23:47](https://youtu.be/nt3o_z1_gII?t=1427)  I think volume expansion is probably one of the most important approaches for POTS and it's been really helpful for a lot of patients in my experience. As illustrated in my slide, we can imagine the POTS patients as the "collapsed balloon" - with the typical amount of water they would have at their disposal, since there is no "pump" that regulates their blood-flow (constriction of blood vessels etc.), their blood doesn't circulate, but pools. The main concept for volume expansion is to try to fill the balloon, in order to build up the pressure that would've otherwise occurred in a healthy patient who has a functioning "pump", thus allowing for an easier control of the overall blood volume. At the same time there are a lot of misconceptions, mistaking "Volume Expansion therapy" for "Rehydration therapy". A lot of people try to casually drink a couple more glasses of water, however, there are different modalities for volume expansion and each of them have their pros and cons. [28:07](https://youtu.be/nt3o_z1_gII?t=1687)  I like to do a "step-wise" approach, starting with "Increased water and sodium" and working your way up to "Exercise". That's because exercise can trigger alot of POTS symptoms, since these patients, despite not looking the part, typically have an extremely low exercise-tolerance, which would be counter-productive for obvious reasons. ### Exercise [29:56](https://youtu.be/nt3o_z1_gII?t=1796)  The aim with exercise is to reinforce the function of the "Muscle pump", constricting the veins and "pumping" the blood volume towards the heart. The exercise prescription should be really carefully planned, since, despite patients reporting an "energizing" effect shortly after completing the exercise - if exagerrated - patients may have really bad symptoms for the next couple of days / next couple of weeks. [31:47](https://youtu.be/nt3o_z1_gII?t=1907)  Exercise is a "real medical intervention" and should be prescribed just like any other drug, with an individually tailored formula, dosing, etc. [33:29](https://youtu.be/nt3o_z1_gII?t=2009)  Cardiovascular exercise for POTS is meant to be gradual, based on the assumption that your cardiovascular system adapts to the exercise, meaning, you have to upgrade the "challenge" little by little. There is no "perfect exercise regimen" that can be applied to everyone - rather, the emphasis should be put on determining and structuring the plan around the individual degree of performance. I usually work with a physical therapist, who regularly evaluates, monitors and supervises the patient's condition and readjusts the treatment plan based on their progress. [35:37](https://youtu.be/nt3o_z1_gII?t=2137)  [36:04](https://youtu.be/nt3o_z1_gII?t=2164)  Usually, in the beginning, we start with core strengthening, which seems to precondition the cardiovascular capacity in a POTS patient. Disclaimer: Don't feel demoralized, because you're not able to put on a "strong" performance in the beginning. Extreme low tolerance for exercise is characteristic of a POTS patient. Whatever you can muster, without relapsing into flares, is well worth the time and effort. It typically takes several months to achieve a level where you can generate any energy through exercise, which is why I might sometimes prescribe temporary IV hydration to bridge that period. ### Other physical measures [37:31](https://youtu.be/nt3o_z1_gII?t=2251)  There are other measures, such as compression stocking or abdominal binders - simple things, that can make quite a difference. It is to be noted however, that many patients do indeed find it hard to tolerate the extra clothing during the summer. [38:56](https://youtu.be/nt3o_z1_gII?t=2336)  A lot of patients are afraid to approach these methods, because, prior to the POTS diagnosis, they've been going to a lot of different doctors that mislabeled/misdiagnosed them as having a "psychological problem" and have been incorrectly told that it's "all in their head". It's hard to imagine the anxiety POTS patients experience, because it's very different from emotional anxiety - it's physically induced symptoms that, among other things, manifest as anxiety. Like with any intervention, whether it be pharmacological or non-pharmacological, setting clear goals, that a given measure aims to achieve, is important. ## Summary [41:36](https://youtu.be/nt3o_z1_gII?t=2496)  This is one of the diseases where patients must understand why they're being given what treatment, since it's kind of an "invisible disease", making the pathophysiology not as evident in its manifestation. ## Q&A [43:51](https://youtu.be/nt3o_z1_gII?t=2631)  "Is there any kind of balance that one should aim for, in terms of appropriate fluid intake and salt intake? Are there any limits, such as a risk for over-hydration or knocking your electrolytes off-balance by overdoing things?" There is a real risk for it affecting blood pressure and heartrate, so I would advise patients to track their vitals. Also, a lot of patients have GI intolerance and are faced with limitations, when it comes to drinking copious amounts of water, leading to frequent expeditions to the bathroom at night. So in those cases, I would suggest being more generous with the water intake in the morning, rather than in the evenings, as to not worsen potential insomnia. "Typically, in the non-POTS population, an extra amount of salt in one's diet might lead to osteoporosis down the line and even lower calcium levels. Is that something that we, as POTS patients, should be worried about?" That's a very frequent question, that I get all the time, for which I do not have the greatest answer. While a high-sodium diet has some connection to cardiovascular risk later on, most of my patients are in their 20's and 30's, so I see this kind of as a "risk and benefit" assessment, prioritizing the serious debilitation, that they're facing right now due to their ongoing POTS, over any worries about potential byproducts far into the future. It might, however, take some more careful consideration for patients, who're of a more advanced age. Regardless, more studies are needed to investigate this matter, to satisfy this question with a solid answer. "There are a lot of questions about what type of exercise you recommend, whether it be recumbent or rather upright? Is there a specific time of day, that is more appropriate for exercising? Exercising before meals vs. after meals?" To be honest, I've never gotten the question before, as to the timing of the exercise. Generally speaking, we call this the "modality of exercise". Basically, what cardiovascular exercise means, is that you're challenging and improving your heart and lung function. There are many different ways to get there, such as rowing, swimming, etc. That's something that should be individualized, based on what difficulties the patient may have with either method of exercise. For example a patient with a hip/joint problem or EDS may not wanna opt for the recumbent bike, but may achieve the same cardiovascular benefits by swimming. That's why I recommend an additional evaluation by a physical therapist, to determine what the most viable measure is. In any case, the basic concept remains a gradual approach to any sort of cardiovascular exercise in POTS. I don't have much advise to offer as for the timing of the exercise. Practically all of the POTS patients have a very low exercise-tolerance. Even if they can only do 5 minute exercises a couple of times in a week, that's a pretty incredible achievement, so timing doesn't really matter at this point. Generally speaking, of course, it's better if you do the exercise before you eat meals. "In terms of specific exercise protocols, we've heard these last couple of the days about the "Levine Protocol", the "CHOP (Children’s Hospital of Philadelphia) Protocol". Is there a specific protocol that you recommend?" What our team has found, is that, whether it's the "CHOP Protocol" or the "Levine Protocol", they follow the same principle of gradual exercise, starting from a really low level of performance. As far as I know, even Dr. Levine emphasizes, that the patients work with a physical therapist to get there, instead of replicating the tutorial slides. So it's highly individualized and there is no one way of doing it. "Let's say somebody has a very low tolerance to exercise. Do you recommend certain pharmacological options that would enable that particular individual to start exercising and go from there?" Again, conceptually, I emphasize volume expansion, when patients have a very low tolerance. I don't really send them to exercise at all, before increasing their volume first, whether it be through IV hydration or medications such as Midodrine or Fludrocortisone. "Would there be any circumstances, where you would not recommend exercise at all?" Well, first of all, never say never. But there certainly are. For patients who are bedridden 24/7, for example, it may not be beneficial to start them on any kind of exercise in terms of treatment for POTS, since it could trigger more symptoms at this point. At the very best, I would encourage them to remain as active as they possibly can, to prevent disease atrophy.