Episode Transcript
[00:00:00]
Jill Brook: Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are going to interview our first POTS expert from India, Dr. Anjali Agarwal. She is a consulting physiotherapist in Hyderabad, India. Although she does telehealth consults all over the entire world, she was trained in the UK and she has a wealth of knowledge about the big picture of POTS and associated comorbidities like hypermobility and collagen disorders, MCAS, long COVID, all of it, and so much more.
Dr. Anjali, thank you so much for being here today.
Dr. Anjali Agarwal: Thank you, Jill. Thank you so much for having me here and lovely to, you know, talk to all the patients who are hearing me too. Lovely to have me here. Thank you.
Jill Brook: Yes, so can you start by telling us about yourself, your work, your background, and what kind of work that you do?
Dr. Anjali Agarwal: Yeah, Jill. So, [00:01:00] I'm a consultant physiotherapist, advocacy co director of Long COVID Physio worldwide. Also, women's health specialist. So, I look after a lot of pregnancy, pelvic floor, postpartum care, and also EDS, hypermobile, MCAS, specialized physio. So, I look after a lot of musculoskeletal disorders based.
You know, with a lot of issues related with MCAS and POTS I was trained in the UK and India, and I have wealth of knowledge in terms of dealing with any kinds of back pain or slipped disc arising because of EDS or because of MCAS as well. And I've been the, you know, the Physical Literacy Ambassador for one of the Badminton Academy here.
So I propose, you know, exercise and, you know, being healthy, being physically active. Helps our bodies to fight any kind of lifestyle diseases. And also being a lifestyle consultant, so I look at holistic approaches to manage any disease conditions. So whether it's MCAS [00:02:00] or whether it's EDS, I do help, all my patients through a lot of intermingling of, you know, diet, nutrition, exercise, stress management, you know, like CBT, Cognitive Behavioural Therapy, so a lot of things together.
I do help with that.
Jill Brook: Yeah, I know your specialty is being so thorough and approaching things from many different angles, and I'm super excited to talk about that. But since you work with people all over the world, and I don't really know anybody else who works with people all over the world, so I just have to ask, does POTS and MCAS and EDS and long COVID, Does it look the same to you all over the world?
Like, is there anything different about what you see in Indian POTS versus American POTS or the POTS or the patient experience? Like, does it seem that like gaslighting is the similar between nations or I don't know, like how's awareness? How's the experience? Any differences or any [00:03:00] similarities?
Dr. Anjali Agarwal: Yeah, Jill. So what I'm seeing is long COVID is almost a true picture copy of what we see in MCAS, EDS, and POTS, right? It's like one picture being fit into another picture. That's what I'm seeing it. So maybe my experience of already treating EDS and MCAS POTS, I've been able to utilize in patients with long COVID.
And, you know, like when patients were saying, I'm having a high heart rate, or I'm feeling dizzy on standing, or I'm feeling reactive to all kinds of food or gastric upset, or I feel you know, like, quite nauseated or sweating. I'm like, these are symptoms of what EDS, POTS, and MCAS patients have already been facing.
So I find it's two correlated, Long COVID and EDS, POTS, and MCAS. Perhaps maybe there's a genetic link of many getting Long COVID being attached to maybe having EDS perhaps. It could be that undiagnosed territories, I would [00:04:00] say, and with reference to what we're seeing POTS patients in India versus POTS in America, I think America is quite, you know, enlightened with what POTS is all about, because they have people like you, standing for POTS is there.
They're advocating for POTS, right? We have doctors who understand POTS, but in India, I think I'm the only, maybe, the physiotherapist who's talking about POTS in India, who's talking about long COVID POTS. But I don't see any clinician understand what POTS means. It could be any of the cardiothoracic surgeons or the cardiologists also I'm meeting, they don't understand what POTS is.
So for the population here also, they don't understand that this is POTS, right? When they come, to me, they'll come to me with a back pain, or a neck pain, or a headache, or feeling dizzy, and they'll be put on any number of medications for preventing dizziness, but they're not understanding that it's POTS.
So, [00:05:00] and many times when these patients would go to the doctor, they're termed as anxious. It's just anxiety, you know, you just have to deal with it. You're just overthinking, you know. They said, I have a back pain, I feel dizzy. Oh, you're just overthinking. You must have been not sleeping well. Take a sleeping tablet, go back home and sleep.
So this goes on and on and on for all my POTS patients, basically. Whether it was prior to COVID or now, the picture is more glimmer because we have so many people with POTS now. So many in India, but to address each and every patient in India is very difficult because the doctors have no knowledge here.
There's no awareness at all among the clinicians, but I'm thankful to all of you who stand up for POTS and several communities with dysautonomia who are helping Americans so much. I think that clinicians over there are well advanced with knowledge has come to my country. So I feel we have, we're having a [00:06:00] big gap of you know, enlightenment about POTS in India.
Yeah.
Jill Brook: Wow. Okay. Well, that's a little bit scary to think that this is considered enlightened. But I wanted to say hello, solidarity with all the brothers and sisters and everyone out there who is sharing in POTS around the world. Yeah. So one more question before we get into your big picture thinking that I love so much.
You have been seeing a lot of young people with POTS where you are the first person who recognizes it for the reason that you just said. Maybe they've been seeing a bunch of other doctors who just tell them they're anxious or they need to sleep. And so I'm wondering, how do those youngest patients typically present to you?
Like, what difference do you think it makes for them to get a diagnosis right away versus 10 years later? And what does it, what does it look like when, and what age is that when you see it at the youngest?
Dr. Anjali Agarwal: So my youngest [00:07:00] patient is about 6 to 7 years old, young girl. Yeah, and maximum I'm seeing are the teens, between 12 to 16 years of age. So how the parents approach me is that I feel my kid's posture or the spine has got crooked. So they approach me with, something called as scoliosis, where there is a lateral curvature of the spine and they feel that the kid is snoring in the night, not sleeping well.
That's one thing they talk about body pains, leg pains, and they feel my kid is getting tired very easily. He wants to go to sports, but when he joins sports, he's getting tired, exhausted, and he wants to sit down. He wants to go to school, but comes back home very tired. Okay, so, many of the parents have approached me, my daughter is sent to school, I get a call from the school that your daughter is not concentrating in the class, please take her back.
So the parents go and pick the girl back, and many times they talk about, they're not able to climb staircases. Right? [00:08:00] And at that moment, the parents approach me thinking it's a Musculoskeletal Disorder. It's a Spinal Disorder. That's how they approach me. So, when they come to me, that's when I start digging into their own history.
And the way they, you know, look. You know, physically the appearance of a patient can easily tell me that there is definitely hypermobility dominating these kids. So usually you can see the way they're walking, there's not a very sturdy gait, or there's a spine which you can usually see the curvature of the spine.
So all these gives you a telltale sign that definitely that's something called POTS, because of which they're not able to, you know, bear any exertion. They're not able to stand for long hours in the school PT class, the physical literacy class. So when I measure, just do a random testing on them, they all show up as POTS.
So, from a kid who is 5 to 6 years, still 16 years age.
Jill Brook: Wow, that's so interesting, and [00:09:00] it's funny that you say that because it had never occurred to me that somebody would see it as scoliosis or something like that, but now that you're saying it, my first symptom was, I would call it deflating. I could not stand up or sit up straight because I just didn't have the energy and it just felt too hard.
And so I could see how all that slouching and how all of that slowly melting into the, you know, sideways into the chair would look like some of those other things that you talked about. That's, that's really interesting. I think it's important to have insight into what POTS will get mistaken for early.
Dr. Anjali Agarwal: Often, often. And most of the fathers would reach out and say, my son is very, very lazy. He doesn't want to go to play. So, you know, his friends are going and playing football tournament. He doesn't want to go to play. I don't know why he's making excuses. He just wants to [00:10:00] play with phone, mobile phone. So, that's the time when I say, no, it doesn't look like that.
Your kid is definitely having an issue.
Jill Brook: That's so interesting. Okay, and so in your opinion, what difference does it make to spot that POTS or related comorbidities are early, like at, you know, 7 or 10 or 12 years of age versus having them continue on not being understood for another 10 years and then get a diagnosis. Is there a lot that can be done if you get it right?
Dr. Anjali Agarwal: A lot, a lot can be done. So I have patients who have been not, you know, diagnosed till the age of 30. So their patients have approached me when they were 30 or 35, and now these young kids have approached me. So these kids, I find, within three to four months, they start to, you know, develop a way to handle POTS well, and their spine has got all corrected, they are more able [00:11:00] to take part in school activities, their ability to, you know, quality of life has improved drastically for them.
Versus the person who has reached out to me when was 30, has history of dislocating joints every now and then, has been talking about painful periods and not totally debilitated during the period's time with chronic headaches or migraines and they've been talking about, you know, everybody is thinking it's anxiousness, it's anxiety, it's all depression.
My family members don't believe me. My friends don't believe me. My office colleagues are saying why are you taking a leave every time from the office? So when they come to me, by that time they have developed a lot of social anxiety. So they don't want to face the world because of whatever has happened to them, because nobody's believing them.
Now these young kids have approached me when their mind is not thinking that there's something wrong in them. So we can, you know, really, you know, meander the path [00:12:00] for healing for them without they getting that social stigma that something is wrong with them. So I find the kids are really blooming into being healed well versus the adult who has reached out to me when they were 30 because they're filled with guilt, they're filled with you know, I'm not able to do a lot of things, they're full of guilt.
And that I have to, you know, try to take out. You know, there's nothing wrong with you. This is not what you should think about you. What did I do wrong when people are not believing me? Doctors are not believing me. Family members are just rejecting me. They're thinking that I'm making a fuss about Christmas dinner.
I need to eat this food. I feel my stomach pains when I have to eat you know, the dry fruit cake because there's so many nuts and I react to it. So I, this is what I find. Now, the kids who have got my help earlier will be able to be assertive. They know how to manage their condition and they're brave and independent now, [00:13:00] versus somebody who came to know about this condition when they're 30.
Jill Brook: Oh my gosh, yeah, it's funny. I always talk about Christmas dinner being a point of, of difficulty. It's funny. I wish I had found you so much earlier. I think I would be a different person. That's amazing. And I've never heard a healthcare practitioner say that they wanted to remove the guilt of the years that a person was, was building that up from not knowing what was going on and not being understood.
That's amazing. So you are also known for another thing that I love, which is saying everything in the body is connected. And I really appreciate that you seem to come at every patient with a whole lot of things to try from different angles. And in the past, I've heard you talk about this whole complex bundle [00:14:00] of problems and how, because everything is connected, there's a lot of things that can be tried.
Do you mind talking about that in general? And I could throw out some specific angles too, or I could just let you free associate. You're so, you're so great on this topic.
Dr. Anjali Agarwal: Yeah. So, Jill, I feel everything in our body, our thoughts, our food, our mood, our hormones, how we, you know, the environment, everything is connecting to our connected tissue, right? So if we are in an emotionally upset state where we are being, you know, you know, undermined, we are not being, you know, accepted the way we are, our emotions will drive our hormones to go really for a, you know, like haywire.
And especially if you see for women I'm talking about, the young girls, 14, 15, when they get their periods, right, and they will be talking to their mom or colleagues, [00:15:00] I have a painful period, I have a migraine, I need to rest. But everybody will say, no, your other friend is not trying to rest. You, they are going and playing.
Why can't you go and play? So, the hormones during that, that time of the periods, you know, they are deciding how your connective tissue will behave. So I have seen more dislocating joints during two days prior to the periods than I've ever seen. Right? So a woman's hormones, especially the menstrual cycle, can cause more dislocating joints in that period of frame.
And that drives a lot of anxiety in the patient and that can drive POTS. Right? It's a flight and fight syndrome. So if a lady is having anxiousness more increased because of the hormones, estrogen and progesterone, they are dominating her joints, they're dominating her ligaments, they're dominating her food.
Eating, you know, capabilities also. So [00:16:00] everything is so connected. And the second most important thing is the stress, right? If we are going to an event and we have a social commitment to the event and we need to reach in this particular timing, but we are not able because our body is not doing good because of whatever the POTS syndromes are or MCAS has got flared up.
That will get more flared up if we are more tense or we are made to feel that there's a stress being developed because of the, you know, the situation. Then there are environmental triggers, right? The cold weather, the hot weather. So in India, I find a lot of my patients who are in an extremely tropical climate, which are very hot, they do worse during the summer months.
And as soon as the cold winter starts, they again find their kneecaps are dislocating and their POTS syndromes just go up. The whole symptoms. And especially around festivities when they're eating too much of carbs in the form of sweets. [00:17:00] Again, the food that again causes, again, flare up of POTS for these patients.
So, and nutrition is so important, right? Many of the POTS patients go deconditioned because they are not able to eat food, which is good food also in times because they feel that they'll puke. So, I have this young patient who feels that if she eats, she'll puke. That fear of eating food and puking. Makes her not eat food.
So she goes hungry. Now, at the same time, if she's going hungry, that will drive POTS to go more bad, right? So we need to teach the parents of healthy eating, trying to give more nutrition dense food every, you know, every two hours. Don't give a big meal, don't make it carb rich meal, but more good nutrition, packed with nutrition, given to the child.
Every one to two hours, small bowls of food, that is nutrition, so that also helps these patients. And regarding [00:18:00] the joints and the connected tissues, right, so everything in our joints from our spine to our pelvic, our hip, our pelvic floors, they're all connected together. So for example, a pregnancy mom, she dislocates her hip. Maybe in a day, two times. She just dislocates her sacroiliac joint and that will trigger her POTS to go bad, right? Huh, we had a lady who was giving birth and the doctors, gynecologists have no idea that she has POTS, and they have no idea she has hypermobility. So she's been given epidural. An epidural will, you know, kind of make her whole lower half of her body numb and she doesn't know how to push the baby out.
At that moment, I came to know that my patient, she had been seeing me and she had gone to deliver in different city where the gynecs had changed. Because the gynecs I was working with knows what I [00:19:00] was telling them. But she had to, you know, go for an emergency, you know, delivery in another city. Then I had to reach them out and said she has POTS, she has sacroiliac joint.
You know, too much of dislocations can happen for, please be careful with normal delivery. Now, what happened, as a result of what happened to her, she is now in post traumatic stress, which causes her POTS to increase post delivery, postpartum POTS. So, I always say there's so many things attached to one thing, which is your connective tissue, your nutrition, your stress, everything.
Jill Brook: You know, you mentioned something a few minutes ago that I had never thought about. I think you said slipped disc causing back pain in somebody with connective tissue disorder. And I don't know why I had never thought about that being a thing. It seems like in EDS or other hypermobility spectrum disorders, we always think about the [00:20:00] shoulders and the hips and the knees or maybe the hands.
But you're saying that slipped discs is also a thing?
Dr. Anjali Agarwal: Also a thing. So, majority of my hypermobile patients, they come to me with a slipped disc, okay? So, they have several disc herniations all throughout their spine and many of them may have got operated at least five times in a year for one disc after one disc after another disc, and that's when when you dig the history you find they're all hypermobile or they are having EDS and POTS is again the biggest reason that they have hypermobility because the because of the less blood circulation in your body parts, body organs, the spine and the muscles are not able to get strength and that's why they end up you know kind of getting into the spinal disc herniation or injuries.
And two of my patients, one is [00:21:00] the sister of another patient, they happen to be both hypermobile. Both were about to approach the surgeon for surgery when I said, no, wait, wait, wait, there's something else I need to talk about to all of you. So then I explained that they do have POTS and they do have MCAS.
So if they handle MCAS and POTS, they would do very good with their hypermobility. So I feel everything is connected, the trifecta. So if you control POTS, you control MCAS, you control hypermobility.
Jill Brook: You know, okay, so I have heard other healthcare practitioners say that they suspect that some hypermobility is not just genetic, that it might be literally caused by the MCAS because some of those mast cell mediators, like the elastase 2 and others actually can alter the collagen and make the tissue [00:22:00] more stretchy.
And I feel like this is an important thing that patients need to know because if you have overly stretchy collagen, and POTS, in my mind, that could be two different systems showing Mast Cell Activation Syndrome. And my understanding is that you cannot get a diagnosis of Mast Cell Activation Syndrome by the Consensus 1 or the Consensus 2 criteria, unless you have evidence of symptoms in at least two different systems.
But if people are failing to recognize hypermobility and faulty collagen as one of those systems, and if they're failing to recognize POTS as one of those systems, they might be one of those people who says, oh, I don't have the trifecta. I only have POTS and EDS.
Dr. Anjali Agarwal: Yeah. So I had one patient with long COVID and he had all the trifecta. He had POTS, MCAS, and hypermobility. More like, you know, he was looking like [00:23:00] a marfanoid features. Everything was marfanoid. And we worked a lot on MCAS factors for him and he started to walk. He was bedridden. He had almost gone, undergone and seen 50 doctors all over the world. Like he has seen 20 doctors in England, at least 30 doctors in India. So my thing is Long COVID is also doing something similar as MCAS, and that is causing spines to get affected, especially because, as you mentioned about the elastase.
Like the collagen getting faulty and that is causing people to get bed bound also I feel so, and this needs to get out to people
Jill Brook: Now, you had also mentioned that you specialize in pelvic floor therapy, and I have to admit, I've heard a couple patients say something about that, but I don't really know what that is, and it [00:24:00] sounds like it could be another thing that is related. What's the pelvic floor? What is, is it involved with collagen? Can you just talk about it?
Dr. Anjali Agarwal: So pelvic floor is your structure of, it's like a hammock like structure, right? It's just helping you protect all your organs and protect your spine and protect, basically, it's just like a hammock covering for your organs, which involves your pelvic organs, your spine, and your abdomen muscles, and everything.
Now, the pelvic muscles are a very hypersensitive muscle group. They behave, they react to, just like how MCAS would have triggers, environmental factors. The pelvic floor is very very sensitive to MCAS reactions.
You know the women tend to feel that they have vulvodynia, pelvic pain, sensitivity around the pelvic. So that's all coming because of MCAS and as a result of POTS, what happens is they keep [00:25:00] losing muscle mass in that area and they tend to go very dysfunctional with core and they always tend to have, you know, urine leakage, urine continence, which is again another symptom of POTS where they want to have bladder sensitivity.
They want to go for frequent urination. That's again a symptom of POTS. But again, if the pelvic floor is not strong, the spine can never be strong, so your pelvic floor is the structure for maintaining your spinal health. So that's why we see if the pelvic floor is gone all haywire, the spine will go dislocate and then series of other joints will start dislocating.
So that's your fulcrum of the body and that needs to be taken care of. So while women give childbirth or during periods, women can dislocate the pelvic floor 10 times in a day.
Jill Brook: Oh wow! So I might have to ask you if you would come back sometime and talk more about this [00:26:00] because there's a few more things about pelvic floor that I am certainly no expert on, but for example, I've had friends who have severe EDS who have had prolapses that I think might be related, and I have also heard about pelvic mesh.
I don't know if you've heard of that, but when, when some people have, I don't even know what kind of issues with their pelvic floor, they might have implanted pelvic mesh to try to help provide support, and my understanding is that there's a lot of people, I think there's a class action lawsuit right now for people who have not done well with that, and I think that their bodies have had immune responses to it, and I've heard some of the mast cell doctors hypothesize that maybe if you have severe MCAS, you know, you may not react well to foreign things implanted in your body, [00:27:00] and so this can potentially snowball into something really disastrous for some patients.
And it sounds like you might have ideas of how, if you get ahead of it early on, you could do therapy and maybe prevent some of this stuff.
Dr. Anjali Agarwal: Yeah. So I have a mom who has MCAS, bad MCAS, and she has been asked to put a mesh because of a prolapse, right? And then when we dig into our history, her mother had ventral wall prolapse. She's hypermobile. Her mother's hypermobile. So there's a link of undiagnosed EDS. So then I had to get back to the gynecologist and said no way, we'll manage her prolapse through exercises.
And we did it, she's better off. The prolapse, which was about like one inch, has gone back in. And we've been told what kind of activities she should be doing, what she can avoid. And the days when she eats pastas, right, it's carbs, [00:28:00] she'll have a bad prolapse incident. So we, she have been told what kind of food she can avoid so that she's not constipated, how she can manage her MCAS, because she's reacting to the cheese, she's reacting to the pasta and the cheese.
Jill Brook: And in case there's people listening who don't know what a prolapse is, can you say what that is?
Dr. Anjali Agarwal: So prolapse, just like a pelvic floor, is just like a door for protecting all the organs like our, you know, vaginal, vagina and our bowels not to kind of pop out from the pelvic floor. So it's like a door, it's like a guard for protecting these organs. Sometimes because of EDS or people with hypermobility, they have overstretchy pelvic floors.
Okay, and many of the times when women are too constipated, or men are too constipated, or they are doing any kind of exercises which can cause their pelvic floors to really stretch far beyond, they might kind of get it a little bit more loose and [00:29:00] the organs start to drop down into the pelvic floor. And that's when they try to come out from the vaginal, you know, opening, through the urethral opening, or through the bowel opening, they all try to, you know, kind of pop out these organs.
Well, the rectum can come out, called as rectocele, cystocele, then we have urethrocele, where the urethra is only popped out from the opening of the urethra. So this happens mainly with hypermobile bodies, and also with EDS, very common. Mainly coming because of the food which we eat, because of MCAS also.
So, this is happening for people who have had MCAS for a long time, not treated, not diagnosed. That's one. Second is EDS not diagnosed, not treated. Third, no advice being given how to give birth without trauma. So they need to know how to give baby outlet, right? Baby's coming out. How to get the baby out that [00:30:00] need to be taught in a very diligent fashion for EDS moms.
Right. And for the boys, I see a lot of boys with rectal prolapse, right? So these boys would have gone to the gym and they've eaten all kind of food which is not helping their gut and has caused an MCAS reaction. And after four months they end up with the rectocele.
Jill Brook: And so is it the combination, well, first of all, I'm just going to say to listeners that yes, you heard that right. If some of your insides are starting to poke out, that is the prolapse. If you are seeing body parts that are supposed to remain internal. That is it. And I think what you're saying is so boys who have eaten the wrong things and then go to the gym and have that, I think they call it the Valsalva Maneuver, where you, it's kind of like a lot of pressure building up from being at the, from doing exercises at the gym and that can sometimes push those body parts out into a [00:31:00] prolapse.
Dr. Anjali Agarwal: And that is common only when they're hypermobile. It won't happen to, you know, normal tissues and all. And probably they would have had MCAS from childhood, but they're not not able to correlate, they just call it as allergy.
Jill Brook: Wow, but that's so good to know that something that has got to be so alarming and distressing, doesn't need surgery. You're saying that, you know, some exercises, some dietary changes, maybe some habit or lifestyle changes. Okay. So for anybody out there in a part of the world where they don't have access to the fancy testing or the prescription drugs or like great specialists who understand the POTS or the EDS or the MCAS, what are some of the top things that you think they can do to feel better on their own?
Dr. Anjali Agarwal: So, the fancy testing, I usually don't propose to a lot of [00:32:00] young kids also, because they are very, very scared of any kind of hospital visits also. So, a simple test of, you know, sit to stand test, where we have a pulse oximeter, any nurse, any physician, any physiotherapist, any, you know, you know, functional medicine specialist, anybody can do the simple testing where they put a fingertip pulse oximeter, make the patient lie down for at least, you know, one minute, and then keep recording how the heart rate is doing and the ISP which is doing.
And after about a minute or so, ask the patient to immediately stand up against the wall and then try to keep monitoring it, how the heart rate is doing. And if it's a kid, if it's a 40 beat per minute race for a small child, for a kid or a child, then we know that there's definitely an orthostatic hypotension happening, postural, Postural Orthostatic Tachycardia is definitely setting in, and for an adult it [00:33:00] could be 30 beats per minute. This is a simple test which I use in my clinical practice, in telemedicine also. Yeah, so it has helped to, you know, tailor down the approach to, well, very basic things where we know that there is POTS.
And to manage their giddiness or dizziness or day to day activities, the simple lifestyle modification which we give is to give them water, hydration is very important, hydration with electrolytes or hydration with, you know, just a pinch of salt, and more salty stuff to be eaten or you know just to help them with the blood volume.
Then simple advice like wearing of compression socks which could be knee high or till the ankle raised or till the waist or waist binder for many women who tend to go very bad puking food during you know menstruation. I give a abdominal binder for them and then trying to manage good [00:34:00] amount of sleep because we see the flares up come when the person is not slept well in the morning.
So I always tell them have a head raised about like 30 degree height with pillows popped up and then try to sleep off, trying to maintain dim lighting because, again, the lighting and the surrounding and the environment of the room will affect their sleeping pattern. And if the sleep is set right, there would be no trigger for them in the morning with POTS.
The first and foremost thing is, when you get up first thing in the morning, have your drawer, keep the water and keep your electrolyte, have a drink, and then step out of the bed. Try to do basic little exercises which are usually teach to following the Levine Protocol or the POTS exercises which we can do for following certain exercises to make your calf to pump more blood back into the heart and then step out of the bed and start your routine.
[00:35:00] The first and foremost is not to go hungry, keep yourself well hydrated, try to eat some small portion of food. Maybe in the first hour is very difficult, but have in the second hour small portion of food, but no carb rich diet. It should have protein, it should have small amount of carbs, more of vegetables, which helps to, you know, metabolize and doesn't cause gastroparesis also, which will again cause your symptoms to trigger.
And then you should try to do a little bit of extra exercises if you want to do. So, most of them, they want to go morning, they want to do some exercises, which I always tell them start your dose slow and pick it up by the end of the mid, midday, and if people are going to work, so you need to have work modifications, carry your small mini diets, food or snacks.
If you have MCAS, please take your antihistamines also along with you wherever you're going. If you're [00:36:00] going for any party, like a Christmas vacation, please carry all the needful things in your bag. Don't leave them. And if anyone in the family doesn't know about them, keep a note written as to what should be done if there is any kind of a flare, because many times these kids will go to some friend's house and the mother will not know, she'll, you know, put peanuts and things they are allergic to.
So please carry a note from home, so that your vacation is happy and you can enjoy your holiday. And also make sure that you have all the contact list numbers of all your doctors, in case anyone wants to speak with you.
Jill Brook: Yeah, great, and you had reminded us that you are in a very hot climate. What are the favorite heat management strategies for the POTS patients in India?
Dr. Anjali Agarwal: So we keep AC air conditioning, which is a portable air conditioning now, which you can roam around anywhere in the room. [00:37:00] That's one thing. Second thing, they have ice cube belts, you know, ice cube belts, which they put it around the neck. That's one thing. And then we have a lot of, you know, frozen smoothies, which we keep, like it can be a watermelon or a beetroot smoothie, something which can be kept in the refrigerator, taken out, which is MCAS friendly POTS friendly, but it's giving you hydration along with the electrolytes going from the fruits. Then there's a lot of you know, like we have a lot of buttermilk, which can be histamine reaction because of it. But sometimes we do make from the almond flour. So almond can be, you know, fermented.
And then a buttermilk made of, out of almond and little bit of herbs and spices can be added just for the time period when the heat is too much, that's one thing. But again, they can't wear compression socks under heat, it's like very, very sweaty, very, very messy. So, I always tell them to keep their legs up against the [00:38:00] wall, have the air conditioning on, have the fan on to their face and that helps to manage their condition very well.
And I do talk about taking as much water and electrolytes, keep themselves well hydrated through food also. They can eat any kind of fruits, or they can eat any kind of small meals which are easy digestible, not heavy digestible.
Jill Brook: Excellent. Well, this has been so much terrific information. Is there anything else we should say about this, or do you have any final words for patients?
Dr. Anjali Agarwal: I would say that both POTS, MCAS, EDS and EDS is a trifecta which come together and these are things which are managed by timely committing to what we want to achieve from our health goals. And I think an individual, the onus should be on the individual that they can manage it. And all my patients are recovering in a way [00:39:00] that they're able to manage their symptoms well and independently.
So, from the time my patient was bed bound, in three months time, she's gone back to school independently. Yeah, we need kind of a walking aid or a wheelchair assistant sometimes, but she's able to manage her symptoms well. So I think there's hope at the end of the tunnel and with all, you know, things with Jill and everybody around this community of POTS is doing, I think they're doing a wonderful messaging to all the patients.
And I think that will help to help all the patients to get empowered. And I think every one of us should empower ourselves. And that includes the patients also. Take the health in your hands. Even if nobody is believing you, believe in yourself. You can do it and people have done it. So you can do it. And there's definitely hope.
Jill Brook: Wonderful, wonderful. Well, Dr. [00:40:00] Anjali, where can people find you online if they want to check you out more?
Dr. Anjali Agarwal: So I'm there on Google, if they can just Google Dr. Anjali Agarwal. And there I'm on Facebook, I'm on Instagram, on two accounts. I'll share the link, you can put it down. And then I'm on Twitter as well, so people can definitely, you know, tweet to me or send me a message. And I'm there, all, all over the globe I'm there.
Jill Brook: Wonderful. Well, we will put that in the show notes so that everybody can find the link easily. And we just thank you so much for your time and your wisdom today. We just so appreciate your information and the work you do to help everyone, and you are just such a, such a beacon of light there in India.
Bringing so much information and awareness in a place where it sounds like, so far, it's all you.
Dr. Anjali Agarwal: I hope we have many, many other docs understanding and, you know, believing what I'm telling [00:41:00] them, you know, there is something called POTS.
Jill Brook: Well, thank you for everything you do. And okay, listeners, that's all for now. We'll catch you again next week. But in the meantime, thank you for listening. Remember, you're not alone, and please join us again soon.
