Jill Brook: [00:00:00] Hello, fellow POTS patients, and marvelous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are interviewing Dr. Kirti Sivakoti about her work with pediatric patients with POTS and other comorbid conditions. Dr. Sivakoti went to medical school in India, completed her pediatric residency in New York, completed a pediatric critical care fellowship at University of Iowa, followed by focusing on medically complex children in her community pediatric practice.

Currently she is a professor in pediatrics at the University of Utah, and she is also the Associate Medical Director of the Pain and Autonomic Symptoms Evaluation and Support Program at Primary Children's Center. And her primary interests include pediatric dysautonomia, specifically POTS, chronic fatigue, and post exertional malaise.

Dr. Sivakoti, thank you so much for being here today.

Dr. Kirti Sivakoti: Absolutely. Thanks for having me. That's a wonderful [00:01:00] introduction. I'm still an assistant professor, but...

Jill Brook: Well, we're so excited to get to know you a little better 'cause you're doing like the hardest work in the world. And maybe you could start by telling us just a little bit more about your background and what got you here to this point of working with really medically complex patients.

Dr. Kirti Sivakoti: So, I was always sort of interested in complex patients and that is what drew me towards ICU fellowship. So, after a year of PICU fellowship, I realized that as much as I enjoy the complex patients and complexity, I don't quite enjoy the acuity of ICU settings. So I sort of carried this work of seeing complex patients out in the community.

So in my gen peds practice, I just tended to attract more patients who are complex and with COVID happening, I started seeing some of these patients, right, the long COVID and the fatigue and the POTS patients. Honestly, when I [00:02:00] encountered these patients in private practice, initially, I didn't know what to do.

Even though I had an idea about what was going on with these patients, and whether it's POTS, it's, it's like I didn't have the specifics on how to help these patients. You know? And the, the, the downside also to how our healthcare system is built, the medical establishment, community clinics, private clinics, is the, the economic model. It's not enough time for these patients, right? So in a physical, we get maybe 15, 20 minutes to see a teenager. So if a teenager comes in, they have been roomed, and they tell me in a room all of a sudden that, hey, doc, by the way, I'm also dizzy and I can't sleep and I'm tired, and I'm dizzy and lightheaded, right? Thinking about, this could be a million different things. So like, number one, how do I even go the path of autonomic dysfunction, right? Like that's a big challenge. Number [00:03:00] two, it's just not having enough time to do orthostatic vitals. Like I'm already 20, 25 minutes into the visit and to pop out and have my medical assistant and ask her to do, can we get a set of orthostatic vitals, which takes another 15, 20 minutes and I have like three or four more patients waiting.

It's almost impossible to, to get through that. And, and I'm assuming we are seeing patients on those lines where like, okay, let's get some labs or maybe sleep more, maybe drink more, sort of the first thing that we recommend in gen peds. But these patients keep struggling unfortunately, and they come back to clinic again and again with the same symptoms.

I think when I started seeing that pattern, I, I started realizing how community practices and private practices are really not built for this. Like even in academic medicine, gen peds is not built to take care of patients with this level of sort of biologic, psychosocial complexity. And [00:04:00] that is really when I decided to transition over to academics.

So, I was in community practice, private practice for like six years before I decided to make the transition to academics because this is exactly what I wanted to solve, right, this issue of not having systems built, not having advocacy for these patients or algorithms or how exactly to move the care of these patients forward.

Jill Brook: Wow, that's so wonderful that you were able to do that. Can I ask, so when you were in community practice, you know, like how commonly do you see children with this kind of complex problem. Is this like a needle in a haystack or is it pretty often, or did it change with COVID or what, what did you see?

Dr. Kirti Sivakoti: I think all of the above. So, I think I tended to attract more complex patients per se, just because of my interest in complexity. So when I talk to some of my other colleagues, they, they talk about, I probably [00:05:00] don't see it as frequently, but maybe the recognition isn't as much. But I tended to see these patients more like in terms of the chronic fatigue, right?

So can't go to school and workups or unexplained symptoms and whatnot and then come COVID, I think it definitely increased, so in terms of the number of patients with like, I'm just tired three to six months after having COVID or post exertional malaise type symptoms, right? Like I exercise a little bit, I, and I'm in this place where I'm just crashing.

I think some of the complexity also comes in, in terms of the struggle, understanding how to coordinate care from a place that doesn't enable it, right? Like how, what are the right places to send in terms of physical therapy? Who is a psychologist who would be comfortable addressing and like talking about the chronic pain and the functional disorder sort of symptoms without sort of alluding to anxiety and depression, because yes, as much as CBT can help with anxiety and depression, [00:06:00] CBT, there are targets for Cognitive Behavioral therapy in dyautonomia in terms of pain retraining, retraining the pathways, and cognitive restructuring. So identifying those resources in itself seem like a whole job in itself, right?

Like how do you navigate this complexity? And then it almost seems like a challenge when you ask that your schedule be blocked for 30 minutes or 40 minutes to get through the care of these patients, right. And then what do you do about follow-ups, right. So, so I think, I think it's a combination of COVID, combination of probably me attracting a little bit more complex patients. Yeah, all of that.

Jill Brook: So now you are the Associate Medical Director of the Pain and Autonomic Symptoms Evaluation and Support Program at Primary Children's Center. Can you say what that is?

Dr. Kirti Sivakoti: So this program actually was born out of the need. We saw this, this need [00:07:00] where this patient population, right, with dysautonomia, chronic pain, functional disorders, they were being bounced between providers. So the frequent healthcare journey is they would see their PCP, to cardiology, to neurology, to rheumatology.

And unfortunate thing about specialties is as helpful they are in ruling out diagnosis, they will look at patients from their own lens, from their silo. So we are good at telling patients what they don't have. I think it's, it's hard to narrow it down and look at the whole patient and understand that they're spending two years, four years, seven years, navigating the healthcare system.

They're being told what they don't have, but all along we're missing their functioning. All along, they're not going to school, they're not socializing with their friends. They're not doing the things that a regular teenager would. And unfortunately POTS strikes at this unfortunate [00:08:00] time, like 14 years, give or take couple years here and there, where teenagers already are changing, their bodies are changing, and they're trying to navigate school and bullying, like all of these normal teenage pressures.

And on top of that, having a body that they can't control, that they faint or they're dizzy and the stress of can I drive or can I not drive? If I go to school, doing that assignment is gonna be such a big burden on me that I can't go out and exercise for like 30 or 45 minutes now because if I do that, now I can't hang out with my friends.

So what do I do about my long-term career goal? How do I plan my future? Right? So, and a lot of people sort of think that it's just a heart rate issue or a dizziness issue, but it's way more in terms of how it affects their quality of life, right? And how it impacts their trajectory, their career trajectory, without the resources.

If they get the right resources, it becomes easier in understanding why is the body [00:09:00] doing what it's doing? How do I have accommodations, the right accommodations, how can I still get to med school, and how can I still get to law school and all the goals that they have. Without the right tools, like if we as, as providers, if we can't name it, we don't understand the pathophysiology and if we don't communicate it with our patients, they think that they, they feel dismissed. They feel like nobody has a clue about what's going on with them. They start thinking of themselves as these zebra patients and they don't understand that it's still possible to plan for a normal life despite what they're going through, right? Like it's, it's a disorder of a normally formed autonomic nervous system that is temporarily sort of dysregulated, and it can take time to bring it back into a regulated state, but if they don't understand that, they can lose all this valuable time. And we know there are a lot of careers where it's hard to [00:10:00] go back and plan once you are past a certain age, right,

where you're past a certain time.

Jill Brook: Yeah. Oh, that's great that you, you see it so well, and it's funny because I feel like I know so few pediatric POTS experts, like I can only name 'em on one hand. Are there very many of you? Do you have many colleagues who are like you? Like is there like a secret team of you who are all like sharing information or...

Dr. Kirti Sivakoti: Well, well, I wish there was, but yeah, there are not a lot of pediatricians who are doing dysautonomia. There are very few. There are probably one or two people and at different institutions that I can reach out with questions, who are actually in a similar role that I am at University of Utah, but not a whole lot of people, not even people locally that I can identify who can do this, who do this at a pediatric level. I think there are a lot more people who do this in adults and they understand sort of the, the challenges of young adulthood. Some of them [00:11:00] sort of extend their capacity and their scope to see teenagers as well.

But yeah, not a lot of pediatricians that do this.

Jill Brook: So I'm excited to ask you more questions about young people with dysautonomia, but I know probably a lot of listeners are wondering at this point, are people from out of town or out of state able to come see you, or do you have to only see people in Utah?

Dr. Kirti Sivakoti: We see patients who are out of state as well. We are actually the tertiary or maybe the quaternary center for surrounding states and we get patients from Idaho, Nevada, Wyoming, sort of like all the surrounding states. The only restriction, I would say, is telemedicine. So as long as we are seeing them in person, there are no restrictions as to where we can see patients from.

But telehealth wise, I think we're a little more, more restricted. I think myself, more restricted being licensed in Utah. But we have a nurse practitioner part of her team who's licensed in more states, so she's able to see patients virtually [00:12:00] or outside the state as well. But yeah, we're open to seeing patients from out of state too.

Jill Brook: Oh, that's great because I know so many, I, I hear so many stories from so many parents about how difficult it is for their kids and sometimes for them too, to get taken seriously. And sometimes it's, gosh, it's heartbreaking to hear their stories of the, what the parents sometimes get accused of when nobody believes what their children have.

So it sounds like you are like sparing Utah from having that problem.

Dr. Kirti Sivakoti: It's, it's interesting that you, you bring that up and you say that because I've, I've had some more experience and I've had a patient where it was heartbreaking where they were, because of the long list of diagnoses on their problem list, and because they were not going to school at some point in their chart, there was a documentation of Munchausen by proxy.

And it's, it's [00:13:00] disheartening because we wouldn't sort of assume the same if they had leukemia or diabetes and if they had a similar, a long list under problem list. And if there were not going to school, right. So it's, it's, there's an element of definitely stigma around this diagnosis, which is, thankfully I think we're moving forward and that's changing.

But yeah, I think we still have ways to go.

Jill Brook: Yeah, that's good. You had said one more hopeful thing a minute ago, and you had talked about the nervous system being in a temporary dysregulated state. And so I guess my question is, how much improvement do you see in children and adolescents and do you think that because they're younger and their bodies are still growing, do you think they have a better chance to improve or worse? And part of this ties into, you know, there used to be some thinking that POTS was something that people would grow out of, and then the, the meme kind of changed to, well, no, we [00:14:00] don't think that happens, but I don't think I ever saw any actual data to support either of those.

I mean, I don't know if you have thoughts about what you see.

Dr. Kirti Sivakoti: Yeah, that's, that's a fantastic question. And we get asked this all the time. So, yeah, with autonomic nervous system, right, so, in POTS we think about this as these patients are baseline normal, they develop normally, they have a normally formed autonomic nervous system, and then at puberty something happens, right?

There's underlying susceptibility and something happens around that timeframe that just tips them into a place of orthostatic intolerance or having chronic pain or functional disorder, sympathetic upregulation. And sometimes that trigger is identifiable and sometimes it's not identifiable. So it can be challenging that way.

But with this diagnosis, I think what we have seen is most patients improve, at least in our practice, we see 75 to 80% [00:15:00] patients improve when they are doing all the things that we talk about, right, when they're putting all those elements in place. And, and our approach to patients, so we have the first line treatments and we have the second line treatments, and we do a ton of care coordination and collaboration with our, with our specialists.

So, so the way our clinic is, we, we are about one and a half days a week. And we see patients with dysautonomia three weeks out of the four weeks. Then we see chronic pain patients a week out of the, the month. And with that being said, there is a huge overlap between chronic pain and dysautonomia and functional disorders.

And we sort of think about patients being on a spectrum. And there are patients where we feel they're more on the orthostatic spectrum and less on the chronic pain spectrum. And there are some patients who are more on the pain spectrum and less on the orthostatic spectrum. And there are some patients who are 50 50, they have a little bit of both.

And it's very hard. I think I've, I've, I've had [00:16:00] very few patients who were one without the other. So most patients sort of fall under the spectrum. Our team consists of a physical therapist who is trained in dysautonomia and chronic pain, a psychologist who was trained with dysautonomia and pain, and a medical team, which is myself and I alternate with a pain person, a pain provider who's triple board certified, and we have sort of assistance from our nurse practitioners as well.

So that's our team. So we have those three teams seeing most of our patients. First line, we talk about the three buckets of treatment, right, so we talk about volume expansion strategies, and blood back to heart strategy, and the cardiac conditioning strategy. We really try to pin it down when we talk about these things with our patients, very frequently they come in hearing that yeah, I just heard about that my, my pediatrician told me, drink more [00:17:00] water, eat more salt. But we really try to get them to a place where they are measuring it, at least for the first few weeks, so they know that they're hitting their targets and then you can stop measuring if you want, but without measuring it's so hard for patients to get to that four to five grams of sodium, or eight to 10 grams of sodium, or however much we're asking them to take. Our nurse practitioner actually did this interesting study where she looked at the amount of sodium and snacks and what they get through electrolytes, and she added that up based on what, what most patients would get if they just got it through diet or through electrolytes without measuring, and it's still less than two grams of sodium. So, so we are really trying to ask our patients to measure so they know they're getting to that place. And then volume expansion strategies in terms of fluids to 80 to 100 ounces, avoiding caffeine as much as possible, and then sort of brainstorming around those challenges because not every patient is able to get to [00:18:00] those goals.

Some of them have trouble drinking that much, eating that much sodium. Maybe they have celiac disease or some sort of malabsorption, or we know that the GI component, the gastrointestinal component of dysautonomia is huge and we're starting to recognize that. There might be underlying motility issues and constipation and gastroparesis, which could limit them from getting that volume.

So sometimes doing some brainstorming around, should we do Florinef or something that helps you retain more, more fluid and salt in your body. So, so that's the volume expansion blood back to heart strategies in terms of the compression garments and talking about high waste compression garments.

And a big focus on cardiac reconditioning as well. So, so we actually see a lot of our patients improve, and I think the instances where we see patients don't improve is when they have those non-modifiable risk [00:19:00] factors. So things like Ehlers-Danlos, so when they're very hyper mobile. And this is where we worry about them injuring themselves during physical activity, especially if they don't have the right physical therapist who also understands how to work with hypermobility, right, how do they protect their joints and strengthen muscles around it, when they don't understand the concept of proprioception and like where are they in space. So as much as I love for them to swim and do yoga and everything, I don't want them to overstretch and now they're injured. Now when they're injured, they unfortunately put themselves in this place where they lose fitness for a long time and now they struggle to get back into fitness again.

So, so it's, it's sort of those risk factors that make it harder. Or some patients with long COVID who have this big component of post exertional malaise, right? The same intensity of physical therapy, doesn't seem to work for them because they get into this push and crash cycle where they crash for [00:20:00] two weeks, and now they get into this place of cardiac deconditioning, and now they're so deconditioned that they struggle to get back into conditioning. So I think being intentional about how we are approaching patients when they have some of these comorbid conditions, the post exertional malaise and chronic fatigue, they, they have to take it super slow.

Jill Brook: I can see how valuable it is to prevent, because I think, you know, you talk to a lot of the older age triad patients and they are always saying, oh my gosh, I wish I had known sooner not to push it or to be careful with my joints or to not expose myself to some of those mast cell triggers. And I can see how catching it early is, I wonder if like, sometimes, sometimes maybe the people don't appreciate how much future suffering they can save themselves just by knowing what their diagnosis is at a young age and not waiting the, you know, years that a lot of other people do.

Dr. Kirti Sivakoti: [00:21:00] And it's interesting that you bring it up also because we just did a study about this, not published yet, but we looked at age related differences in our patients and we sort of, we did separate out the dysautonomia and chronic pain patients, so they were all together and we looked at their psychological and functional markers, depending on age.

It's so interesting that we found that, so we compare patients who are less than 13 years, 13 to 18 years, and patients older than 18 years in terms of their catastrophizing score. So their rumination, magnification in terms of anxiety and depression. We found that patients who are older tended to get into, get into the cycle of rumination of worse anxiety and depression.

And this was statistically significant. So it's, it's almost like what you talked about, right? The catching it earlier, addressing this earlier will prevent them from getting to a place where they think, where they start normalizing that this is how my body is, or this is probably [00:22:00] how everyone feels or getting into the same thought patterns.

Jill Brook: Wow, that's amazing. And you had mentioned post exertional malaise, and I guess so I'm not that educated about ME/CFS, but it breaks my heart to think of really young people who already have it, like how young can that happen? What do you see? And, and how do you get a young person to pace? Is that, is it, you still have to tell, teach them pacing or how, how does it work?

How does ME/CFS work in young people and how young are you talking?

Dr. Kirti Sivakoti: So our chronic fatigue patients are patients who come in for pain, chronic fatigue, PEM, post exertional malaise. We have seen that these patients are younger than patients who come in with dysautonomia, just orthostatic symptoms. So that's our, our tendency. So we have seen that the mean age of these patients, we have seen patients as young as 10 years in our chronic fatigue and post exertional [00:23:00] malaise, even younger, sometimes even eight years. But that's more of an outlier than a frequent occurrence. I would say most of our chronic pain, chronic fatigue, post exertional malaise patients are younger, falling around the 10 to maybe 16 age range compared to our dysautonomia patients who are, who tend to be older.

Most of our dysautonomia patients, the mean is 16. So we see anywhere from like 15 to 19 in our dysautonomia population. So, yeah, we have seen patients as young as eight. We have seen most patients, I would say 10 to 15 to 16. And of course we have patients over that as well, 16 to 18. But I think the challenges are very similar and the way it presents is also so unique.

So we think about patients with post exertional malaise as a little bit of physical activity and they're just exhausted and wiped out very classically for a long period of time. It's [00:24:00] almost like building their reserve bank, their energy tank, back takes a longer period of time. We have seen some presentations that are atypical and we have had some conferences around that and I think we're still thinking about that.

It's where a teenager presented with excessive need for sleep. Nothing else that we would think about in terms of, is it narcolepsy related? So sleep study is normal, everything, but they're still needing this excessive amount of sleep.

And this is despite all their, like ruling out the restless leg syndrome, looking at ferritins and everything. So our thought is, is this sort of an atypical presentation where they just leave so much to recover and then go back to have the normal life? Or if they slept less, would they be more symptomatic in terms of getting dizzy and orthostatic?

Because that is what happened with that patient when they slept less. Now they would be symptomatic with dizziness and orthostatic symptoms. And so we'd never tell our [00:25:00] patients to sleep like 18 or 20 hours a day, right, like, that's not the treatment. Sleep enough, but not 16, 18 hours a day. So yeah, we have seen some atypical presentations like that.

But yeah, with, with most patients, it's, it's almost like they start physical therapy and when they don't understand the expectations with post exertional malaise that they can tire out more easily and they get more tired and now they've crashed for a longer period of time. They almost get disincentivized, not motivated, to continue to do that.

Jill Brook: Wow, that's so interesting. Do you keep in touch with medical colleagues in India? Because the reason I'm wondering is like, are they seeing the same thing or like is there an opportunity for us to help figure out what's contributing to this, if maybe like, if this is something that's happening in some parts of the world, but not other parts of the world or...

Dr. Kirti Sivakoti: Yeah, great question. And we think about that so much. Yes, I do do keep in touch with my colleagues in India [00:26:00] and it's, it's interesting that you ask that, right, because we see this predominance in white female teenage population, like predominantly Caucasian population. And like, I'll answer that in a few different segments, but does it happen in India?

Well, I'll say that there are, well, I think providers are stressed everywhere in terms of access, right, and there are like not enough providers and they try to prioritize the, the healthcare problems that are highest. So if I were to go to India, probably the focus would be on, let's have safe deliveries, then let's prevent sepsis.

And there is more emphasis on tropical diseases and cholera and tuberculosis. It's just so heavy, and the available resources sort of go in managing that, that it's so hard to think about a sort of invisible disorder, [00:27:00] right? So not truly invisible. We see this in terms of heart rate changes and everything, but to have the systems in place and care coordinated where we are taking care of these patients.

It's so much harder, I would think, and this is just anecdotally, right, there's no research, or maybe there are equal number of patients, I don't know, but maybe there's normalization of, well, you just go to school still. You still have to go about your day. Or maybe not knowing that there are clinics like this that exist and there are, there are things that can be done probably just changes the way that they're approaching illness. I don't know. So when we think about why is it that we get a, a predominantly Caucasian population and I've talked to some colleagues in Florida where the surrounding population is, they have Hispanics and they have more African American patients around, [00:28:00] they still get more patients who are white.

So is it something to truly do with is there truly a distribution in terms of is there more hypermobility, is that the reason why they're predisposed to it? I don't know. I think there is an element of both in terms of knowing that there is access, you know, we know that there is healthcare disparity in every diagnosis. Not unique to POTS. But the fact that even patients, the, the, the typical patient with POTS has a long healthcare journey of two to seven years, sometimes longer, to get a diagnosis and to get plugged into the right resources, it really makes me think, is there an element of even dismissal when a patient of color comes with the same symptoms, right. Is there enough recognition? Is there a thought that you know, you're not in pain or, I don't know. So I think it's a combination and we need more studies to look into that. Maybe we need to take this on the road, clinic on the road, to [00:29:00] identify and do more tests on the road to identify are there more patients who meet the criteria?

I bet there are. So going off on a tangent, but one of my colleagues here who actually runs one of our genetic clinics, saw a similar pattern where she was seeing mostly white patients come to her clinic in Primary Children's. But with that being said, they got funding to take the clinic on the road where they could do more sort of testing and they identified more patients, Hispanic patients, more African American patients.

So I bet they're out there, but I think recognition is an issue.

Jill Brook: Right, right. Like we kind of joke sometimes that it seems like a lot of patients are, tend to be like high achievers and we do worry that like, unless you were some high achiever, nobody's taking you seriously, or you don't have the confidence to just keep on insisting that no, no, no, there is something to find.

Well that's so interesting. So I'm excited that you've mentioned [00:30:00] a couple times that you guys do studies and you, sounds like you're paying close attention, you're thinking about these big questions. Can I just ask like a really general question, like what brings you hope? What are you excited about?

What treatments do you feel like are maybe like exciting to you, or what are you seeing work? What's sort of like on the good news horizon for, for POTS and related things?

Dr. Kirti Sivakoti: So much good news. I think there's so much good news. So, COVID was unfortunate, but with that being said, I think what COVID did though is increased recognition of these patients. So post COVID, whether it's more education on what POTS looks like, just because patients with long COVID look so similar to patients who did not have COVID and still have same symptoms.

I think there has been increased recognition of, of dysautonomia, POTS this category of disorders and I think there was a paper that talked about pre COVID how the, the diagnosis of POTS was [00:31:00] lesser and how that increased post COVID. I think there are so many factors to it. I think it's a combination of more education, more recognition, more acceptance of the diagnosis, and probably a true increase in incidents too in terms of COVID leading to long COVID, that long COVID syndrome, COVID leading to things like more isolation and deconditioning, whatnot, that tips some patients into into POTS. But I think COVID has definitely brought this into the limelight. And I think the narrative is changing. A lot of providers, I think initially, there was more stigma and lesser acceptance around this. And, you know, this is mostly affects women and women in healthcare have for the longest time, faced dismissal and, and, and face like, this must not be real, or maybe this is just anxiety, or maybe you are just depressed. So there's a lot of that. So I think the narrative around that is changing. [00:32:00] So I think there's a lot of good news with POTS and there has been an explosion of research. I'm following the research closely and there are so many papers that come out and there's such good debate and discussion around what is POTS really, right? You know, like, are we defining it even the right way? Should we be defining it in a different way? Like just for example, right, we use heart rate criteria right now to diagnose POTS. Is it really the right way? Like that's, that's a, a big debate amongst the experts. So, what about patients who don't show the same amount of heart rate increase?

They are less than 19. They don't have over 40 beats per minute increase in their heart rate when we do active stand testing. And we are telling them that, oh, you don't have POTS because your heart rate's 35 or it's 30. But they're equally symptomatic, right? They're equally struggling through functioning.

So now these patients [00:33:00] who are on the spectrum where they have orthostatic intolerance and all of these symptoms, just not having that excessive tachycardia, now being dismissed. You know, they're being told that they, you must be fine, just go drink water. So they're not even being given the same resources that patients with POTS get. And in our, in our clinic, we see that this patient population is actually way bigger than patients with POTS. I wanna say, I wanna estimate about 60, 70% is more orthostatic intolerance, chronic orthostatic intolerance. And a lesser population actually meet the criteria for POTS. So are we doing justice to our patients by using the strict heart rate criteria, right, without focusing, shifting our focus to their functioning and, and the struggles that they're going through.

Some have sort of talked about how looking at cerebral blood flow, cerebral brain flow is a better measure because that's sort of driving [00:34:00] the pathophysiology in most of these patients, right? They go from a laying down to a standing position or a sitting position, and their cerebral blood flow drops significantly.

Some patients have excessive tachycardia with it, some patients don't. And I think it's Dr. Rowe who did some sort of studies around this where he looked at that was also a commonality in patients who have chronic pain and functional disorders where there's a drop in cerebral blood flow. So, so probably refining the way we are defining POTS is probably the first step because we're missing a big population because of how we are defining that, right. The other thing that we think about a lot is POTS is like a symptom, similar to fever, right? It's, it's like we know how to measure fever, we know how to symptomatically treat fever with Tylenol or Motrin, but we're not doing anything to address the underlying cause of fever, whether it's an ear infection or a urinary [00:35:00] tract infection or a rheumatologic cause, and these are all subsets of what's driving fever. And POTS are so similar in that whatever the underlying cause, the ultimate way it's presenting is blood is not making it back to the heart and to the brain. So now the heart's getting into a mode where it's compensating and we are seeing heart rate criteria.

So these patients could be driven by an autoimmune process maybe after long COVID or post-infectious or mono, there could be a autoimmune process. Some patients honestly could be hyper adrenergic. They are sort of that flushed and they tend to be hypertensive and all of that. And there's some patients who are truly hypovolemic.

They're driven by, maybe there's some malabsorption or celiac disease, or there was eating disorder or anorexia or something, and their nutritional status dropped. And now that volume constriction is driving their POTS. And it's unfortunate that we are lumping all of them [00:36:00] together, and now we are trying to research these patients, right? So it's, I feel like it's so important to separate out these patients and have tailored custom made treatments for patients so we are doing justice to the pathophysiology and, and there's some, a bit to go, there's still a way to go in terms of research.

I think we're getting there in terms of making this more custom made, more precise for our patients.

Jill Brook: Oh, that's fantastic. That's fantastic. Is there anything else you are, I don't know, keeping an eye on or excited about, or thinking about?

Dr. Kirti Sivakoti: So, I think the, the big thing is, and, and some of the things that we are working on right now, the system level barriers to timely diagnosis, management of POTS. And I think one thing to understand about POTS and other of these chronic invisible conditions is to understand how these patients are sort of living at this intersection of [00:37:00] bio-psychosocial complexity and having higher needs and a healthcare system that's sort, sort of not supporting their complexity.

It just overwhelms the regular healthcare system. Even 30 minutes, even that's not enough for these patients, right? They need long visits and multidisciplinary visits because I think the important part about managing this patient population is yes, it's the right treatments and the, and the multidisciplinary team, but compassion and curiosity and listening to these patients, understanding their healthcare journeys and it's, it's just as important, right? We know that when patients feel heard and when they feel understood, that is as healing as medication or some of the other things that we do. So I think it's so important, the value for us to understand the value of therapeutic listening and to be able to make space for [00:38:00] that.

When I was in private practice, I didn't know how to make time for therapeutic listening, right? Like, how do I carve out an hour when I have three to four patients already waiting? So, so I think, I think that is super important for us to sort of reflect on. So I think as healthcare providers or as institutions thinking about, are we creating that?

Are we discussing these patients? Are we creating a system where we're moving towards care coordination, we are moving towards value-based care, we are moving towards compassion for these patients. And I think for patients, it's important not to lose hope. Like that is something that we run into all the time.

They have lived in that state for years now that they frequently come in and they're like, I'm losing hope. This is how my body is always gonna be. So they feel hopeless frequently. So I think we, we really try to impress on our patients that don't lose [00:39:00] hope. This can be rebuilt. This is temporary dysregulation.

It's unfortunate that it took you a long time to get to this place of understanding what's happening with your body. It's possible to come out of this place, so.

Jill Brook: Oh, that's fantastic. Okay, so how do we get more doctors like you and I, I like, I actually mean this question, like can you talk to the med students out there or the aspiring doctors. Like, it sounds like you didn't have like the most conventional path to get where you are going. So what does somebody need to do, if they wanna be a physician and they wanna do what you do, how do they get there? What are their perks? I don't know. Can you sell it?

Dr. Kirti Sivakoti: Yes, absolutely. So, well, the perks of it, this patient population is incredible. This is amazing patient population. They are resilient. They are high achieving kiddos. Like some of these patients that I meet, they are well researched. Like they will come to me and they'll be like, have you looked at this [00:40:00] paper? These patients are high achieving, like we talked about before. These patients would not be in my clinic if they felt better. Like, I really wanna be clear about that. Like a lot of patients think they're just coming back to clinic or they, there is some sort of benefit there. No, these patients would really not be in my clinic and they're here because they're not heard.

They don't have a path forward. This is an incredible patient population to work with and it's so gratifying to see their journey when they improve. You give them the right tools, you give them the right framework, you, you brainstorm how to prioritize some of these things because yes, it is to juggle a lot of priorities, but when they do that, it's so gratifying to see that these patients improve and they don't come back to you. When they're better, they don't come back to you. And I just saw a patient and I literally told her that if I'm ever doing a presentation on, on how patients can improve I'm [00:41:00] gonna call you and she'd be like, yes, call me. So we saw her when her blood pressures were sort of hanging around eighties to sixties, and she was deconditioned, and so sort of like everything that we see with our POTS patients, right? The heart rate change and missing a lot of school. And they really wanted solutions and what can they do to move forward. And yes, we did put her on midodrine. She was on it for a little bit while she was ramping up her physical therapy.

And I met her after four to six months. I met her after I think four months of her implementing these things, doing the volume expansion, the salt, the fluid, the compression, the PT, and she paced herself. And now she's at a place where she is hiking. She's going trekking, she is going back to school. She has plans for college, she wants to go to a different state and do all things.

And I'm like you're better and you're doing so good. And it's, it's sort of understanding that yes, although the [00:42:00] susceptibility is there, it's possible that if you have an illness, something you can get back into a place of deconditioning, knowing that if you maintain your fitness, knowing the tools, it's so easy for them to manage their symptoms.

So, it is super gratifying to work with this population, I think. And yes, there might be some instances, some situations that are hard, but it's, it's like I don't have to take the whole burden myself. I have a whole team. It's a multidisciplinary team. People come up with the same, we, we talk about the same message.

It's not just me. I'm not just lifting the burden off of this patient population. So, so that's relieving in knowing that it's gratifying and I have a team to support me and the way to get more people to do this, it's I think there has to be more grassroots sort of education by teaching our medical students, teaching our residents.

It's not taught. Like I was not taught any of this when I was training, during my residency. All of [00:43:00] my education was on the job. So, so I think teaching and taking this to our residents and to our medical students is gonna be super helpful. I think we're doing that. We have trainees come through our clinic and they see what it's like interact with, with interacting with these patients.

And they take that to the practice now, right? Like, we know these patients are so common now. Every pediatrician, every practitioner is gonna see some of these patients and knowing how to, at least having the resources, knowing the direction to go in, can be helpful. Yeah, so it's education and we are also working on educating our providers.

So we are doing something called Project Echo, where we are going to have these modules or sessions where we'll, we'll almost show, have an interaction, what the patients look like, right? How can you explain functional disorder to a patient? How can you explain the role of behavioral health without saying that it's anxiety [00:44:00] or depression because it's really not.

It's, there are other targets to CBT like cognitive restructuring and pacing and retraining the pathway. So how do we do that? And, you know, once, once they know how to do it, it's easy for them to implement it in their practice. Sometimes it's just equipping pediatricians, providers with the right tools.

Jill Brook: Wow. Well this is so awesome, Dr. Sivakoti, you have just so much care and compassion and knowledge and energy and enthusiasm, and we're just so excited to meet you and know that you're out there making a big difference with your patients. And I'm excited that there's other providers who are coming and training with you and taking it back home so that we can like sprinkle, sprinkle that around.

It's been amazing talking to you. Thank you so much.

Dr. Kirti Sivakoti: Absolutely. Thanks for letting me share everything. So exciting to be here and talking about this.

Jill Brook: And I know that you also do research projects and maybe someday when it's published, I know you're allowed, not allowed to [00:45:00] talk to about it until it's published, but maybe we can have you come back and talk about that. But I know you do so much good work behind the scenes too, and it's just been such a pleasure.

Thank you.

Dr. Kirti Sivakoti: Thank you so much for having me.

Jill Brook: Okay, listeners, that's all for today. We'll be back soon with another episode, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.