Dr. Petra Lynch describes the diagnostic criteria for POTS (Postural Orthostatic Tachycardiac Syndrome) and discusses the common work-up that primary care providers can utilize for POTS patients.
Thank you. This is the first of what I'm trying to do of 12 series of CME credits um geared towards um pertinent topics in primary care. What I'm trying to do is trying to help you all um take care of these patients um in your office and then refer to us if um or me if um you have more questions. Um And when I first started, um when pots really, you know, like two years ago, we all had like someone always, like, someone knew someone who had pots like 10 years ago, right? It was not like every single day you saw someone with pots. I feel like now it's like every single day someone comes in with pots and that's probably partially because of COVID and, you know, evolving, you know, coxsackie viruses. But um, so when it started, I always got this like really strange feeling in my stomach. I'm like, oh my Lord, I'm gonna be here for like 2.5 hours. I'm gonna be in a second, I'm gonna be behind with all of my patients and, and when I have this feeling, um, what I do is I step back and see what I can improve because it's probably me not the patient. So I came up with this concept of the unloved patients. The unloved patient is someone who you really don't like seeing on your schedule because you are actually deficient on thinking how I can help him. It's this, you know, we all wanna help people. And I feel like when I can't help the patient and I feel like at the end of our visit, the patient walks out more frustrated than when they came in. I have done a poor job. Um So the un this is one of the unloved patients. I have many of them in my clinic. I seem to collect them all. Um So Potts, um I can tell you um I can see Potts patients now, a new parts of patient within 20 minutes, my follow up patients take me 15 minutes and I feel like at the end of those 20 minutes, I usually have the new parts of patients in tears because they feel heard. And um my follow up patients sometimes are still frustrated with me because at one point there's, there's, there's nothing but you can get him any better as of now, right? But at least I tell him I'll wait it up with you, right? So this is, you know, we we we treat lots and lots of things in parts and I think this is why parts get so overwhelming, right? Um they immediately come in with all of these symptoms. They are already super stressed because they are so worried that provider won't listen to them. Right. And they don't even know where to start. So they're just like, I just don't feel good and then they go all over the place or they come with like just the other day, 45 questions for you. And I'm like, oh, ok. Hold on first. I have some questions for you. At the end of my questions, she had two more questions for me. So I I think they're trying to figure this thing out. We are trying to figure this thing out. So we kind of have to see in a participation a a it's a parts patient, right? Recognizing it's or dis autonomia patient, it's a dis autonomia. Parts patient already helps them tremendously. Um So the main objective is provide the diagnostic criteria for parts. Today, we were the most common como conditions, discuss some common work up for patient with parts and then how do I manage parts and how do other people manage pots? Um So normal orthostatic response, right? If any of you all just stand up, we dump 17 ounces of blood just right in our legs, right? Um If you have a menstruating female, she they also take another probably five ounces of blood with their menstruation that gets dumped lower and that leads to um additional blood loss. Um um So initially you're instable, you dump all this blood um and your heart rate goes up and you then um feedback back and you are too early vasal constrict. So that's our normal response. That's why we don't faint and we don't feel absolutely lousy all the time when we stand up. Um And it's the plan plank veins as well as the arterial circulation that both have to constrict. So there's a Venus component and an arterial component to this. So in pots patients, this just doesn't happen either the inter vaso constriction doesn't happen or the venous constriction. So what happens in postural tachycardia? They stand up, they dump their blood. If they are menstruating, they're dumping even more blood and maybe their arteries constrict. So they don't get super, super sick and then their veins don't constrict and then they feel lousy and have to sit down again or maybe the arteries don't constrict and they have to really stand up a little bit longer and move around and then finally, maybe their veins constrict a little bit and they just feel minimally lousy. So parts is not uh oh yeah, you have no constriction at all. It, it's a wide spectrum of what does not constrict and it's really hard to see to tell in a patient what they can do and what they can't, it leads to these chronic day to day symptoms. We diagnose it on tilt table testing when the heart rate after 10 minutes goes up by more than 30 beats per minute and just stays upright. And that's a really nice, um, hold on, I'll get back to that in a second t table testing. So, in a regular parts patient when they stand up, right, just the heart rate goes up like this, their diastolic blood pressure, their systolic blood pressure stays the same, but their heart rate goes up really, really fast and they just feel absolutely lousy. That's because splet splenic and um um lower extremity veins just do not constrict orthostatic hypotension from whatever cause neurogenic or cardiac. You drop your blood pressure and your heart rate goes up. So that's when I look at the tilt table test and I tell you guys orthostatic hypertension, no parts tri hydration, tilt them again. Right. That's what I'm trying to, to see. Um, can I maybe get that orthostatic response out? Do they still have parts? Are they dehydrated? So, symptoms of pots, dizziness, standing, nausea and vomiting, lightheadedness, brain fog, muscle cramps, headaches, excessive sweating, shaken neck and per theos. So I walk in a room right now and I'm gonna just give you like live what I do, right? I say hi, this is Doctor Lynch. Um So you are here for pots. Lets me, let me ask you a couple of questions. There's no open because they'll just go all over the place, right? I said I just wanna know a couple of things, right? And either I start with symptoms or with diagnosis. If I start with symptom, I go top to toes, right. We start with brain fog, headaches, migraines, visual changes, um thought process changes, depression, tinnitus coat hanger pain, right? And when I say coat hanger pain, you get this light up eyes. They're like, yeah, feels like a coat hanger. I'm always stiff. Right? It's never in the lower back eyes. It's always coat hanger. Um And then I go down palpitations. Um, do you have any chest pain? Usually? Not a lot, any shortness of breath. Absolutely belly. So I ask for indigestion, fatigue after eating larger meals. And then if they say yes, like what happens if you eat a snack? I still get a little bit tired. Right? Typical sign, I, I have some patients who, when they eat just a little snack in the car, they like have gotten into car accidents because they fall asleep, right? They have been on, on Adderall and all this stuff thinking this is narcolepsy. It's just pots from not being able to maintain the visual dilation, constipation, diarrhea, irritable bowel syndrome, food allergies, Crohn's disease, right? You work, um, yourself low and you ask your females, how do you feel when you menstruate? Do you think you have excessive blood loss during your menstruation? Especially when you change positions? And almost every one of my, do I know my patient goes? Yeah. Absolutely. Right. Um, then you go down to the legs and you ask, and that's when I ask, you know, any tingling dysesthesias, numbness of the fingers. And then I go to Reno its pheno phenomenon. Blue hands. Any problems with cold, any problems with excessive heat. Now, I'm at the toes. I go to the full skin. I go like any unexplained rashes and I'll tell you that why I'm asking this. So this whole list, right? Basically gets a checklist from me and the picture then comes together in my head and I'll, I'll I maybe for you guys pretty soon it will come in and come together as well. Um And then when we are done with this, I ask for the comorbidities, but hold on for a second. I'll tell you that in a second. So this is another tilt table testing. So there's what I'm trying to find out. I'm trying to find out the three, the three forms of parts, the hyper adrenergic parts, the regular deconditioned parts and the neuropathic parts. So, neurogenic parts is more so associated with a lot of what you think is neuropathy changes. It's, it's a ton of headaches, a ton of muscle pain and a ton of dysesthesias and a ton of gastric paresis. So they usually have constipation, they feel full constantly, their hands and feet are numb and tingly. They have a hard time keeping compression on because it feels awkward and they just cannot seem to have any regular bowel movements, hyperadrenergic parts. The patient will say I just can't control my, my heat. I constantly sweat. Then I freeze. I, I, my heart goes up, my blood pressure goes up constantly. Then it dumbs down. I have palpitations. I wake up at night with palpitations and I wake up at night urinating a lot because hyper agentic pots keeps their sodium levels up at night. So they have much more nocturia than the neuropathic pots. And that's gonna be really important. And then you have your regular decondition parts where they have like symptoms from both a little bit of neurological symptoms. They have some I BS, they have some other coma and you just can't figure it out. But somewhere in between and I usually look at my list of symptoms and I just get a feel where they are then. So these are the um so hyper Aden parts, you know, is when we have excess catecholamine use, it's not so much from nerve loss distally, it's more so from an excessive catecholamine response. And um they, they have a lot more think about hyperthyroidism. They look almost like they hyperthyroid paramo, right? Um And initially, I was like, I have to check a TSH, I mean, they clearly have something done wrong with their thyroid, but everyone's thyroid was always normal. So I was like, all right, do you have hyper pots? Now, um the difference on the tilt table test for the hyper agen parts, their blood pressure also goes up, which is a little bit frustrating. You know, it's like, why do you get dizzy if your heart rate goes up and your blood pressure goes up, it's from this massive catecholamine response. Um And I think that's why most patients get misdiagnosed. So we come to what causes pods and a lot of people now actually admit that we think it's definitely a post COVID lung COVID syndrome where some viruses just cause neuropathic pods most of the time. Um not so much hyper adrenergic parts. Um and the post COVID parts can last for up to 4 to 6 years. But it usually from what the research currently thinks it should slowly go away after a while versus hyper adrenergic parts usually stays with the patient life long. Um With post COVID, you can see um auto antibodies forming. And um we think it's just this autoimmune almost what causes pericarditis disease that just goes on your distal nerves. This is our long COVID, obviously 14% now, you know, and we're not even doing the right research right now. So I think that number will go up and up and up and I think that's why you're seeing all these numbers, right? And we just have to, you know, just say, you know, this is, I feel like if you write in the chart now post COVID long COVID, you know, people are going like, mm I was like, no, but we have to with parts. We just have to, they, they give you a nice history. I had COVID in 2022. Um I never really recovered. I've lots of patients who have been intubated in the unit and have developed um pots um proven by tilt table test and by small fiber biopsy. Um they were normal before functioning, high functioning health care takers and they have been very much exposed to COVID. Um and that's why they got so sick. So coma bes after I'm done with my clinical check, I let him talk just a little bit and there's not a lot to talk because all of their symptoms were addressed, right? So they, they already feeling hurt. So there's like, so how does it go from a daily? Like what do you do on a daily basis in your life? What can you do? Are you wheelchair bound? Can you take care of your family? Um Do you go to work? Um Are you still going to to your studies? Um We're just discussing what a daily average um um day looks like for, for the patients and it's a pretty fast conversation and they don't really have to tell talk a lot. Then next thing is my comorbidity. So there's where you have to screen for your associated pots um symptoms, Aler Dan Los, hypermobility, not vascular A Lo Dan Los, right? So, no, you have to make sure these patients and I'm always mortified. I'm gonna miss a vascular Alos de Los, right? Have an echocardiogram and their aorta is OK. Right. Super important. And that's the first thing I was gonna like, don't forget vascular a loss dals because there's gonna be one vascular alos Dals that we miss and they'll have an aortic dissection. So, hyper mobile Alos Danlos syndrome, you basically literally do, can you hyper extend the elbows? And I'm so not hyper, flexible, but literally it's like this third degree, right? Remember, right? The third degree over extension thumb goes on here. They can hyper flex their knees. And then we look, do they have joint instability? Do they dislocate their kneecaps? How many times have they um twisted the ankle? Um Any dyslexic location of of uh in um of the lenses, um elbows or shoulders. Um you know, some patients do look a little bit more paranoid. So you have to really screen and I feel like that's just like a visual. Most of the time Alors de Los is one then mast cell activation syndrome, right? Your rashes, right? So, do you have unexplained rashes? Do they come? Are they hav or are they just erythemas all over your body? Do they come and go? And you have no idea where they're coming from? Are they heat induced? Are they cold induced? Where are they? Um and get a good history on that. And then I usually ask for chronic fatigue and I, I'm, I'm not really super Good Renaud's phenomenon. Um, that's important because I need to tailor my medications to that. Right. How cold are your hands? They're always cold. Right. But do they turn blue? Are they painful? Right. And I usually show them a picture of Reynaud and they go, like, oh, no, that's not me. No, they, they're pretty honest. They don't wanna have everything. Right. Um, and then celiac disease, um, celiac disease is, is important, you know, um there's a ton of um food um sensitivities. Um A lot of patients with pots right now. A new study shows have latex allergies. Um It's, are you, what happens when you eat a banana? No. Boom. Oh, I break out in hives, right? So, super important that you screen a little bit for this and get them tested by regular dermatology. Um So mast cell activation syndrome is this excessive flushing? They break out everywhere. I have a patient with mast cell activation syndrome who just recently went into renal failure from administering six epipens in a week. So, constriction I got II I think it was stress induced, got some stress, had a rash, gave herself an EpiPen, got really freaked out from the tachycardic response, went to an other ard rash developed angioedema, gave herself other EpiPen, you know, I mean, they were just, it was, it came to the, er, with a reman of 3.1 and acute renal failure. Um So, um and in the year and then they go, like we gotta give another EpiPen was like, let's stop with the Epipens guys do something else, right. Um So, um they can hurt themselves because what they're teaching is like, let, let just, they told me this is how I fix it, so I'll do it right. It's some times also the compliance being so frustrated with the medical system that I just do exactly what they tell me to. Well, you can't administer six epipens in, in a week. Um The migraines are definitely um prone and always screened for obstructive sleep apnea. So, out of the comorbidities, you see migraine headaches, 40% of this autonoma patient and parts of patients have migraines. Um If you look at um irritable bowel syndrome is in 30% and A L Danlos is a quarter. So every fourth patient you see has definitely genetically diagnosed A L DANS. So they don't make it up because I was initially, I was like, really guys, what do you read again online? Um But the study really shows it's 25% and that's genetically uh that was genetically diagnosed. Um, asthma is there and we talked about iron deficiency anemia, gastroparesis is very, very prevalent. I have three patients who currently are feeding tubes. Um They are so dang sick and they really cannot move any of their food through, um which does not help their fluid intake at all. Um The mast cell activation of the autoimmune disease like hashimoto's thyroiditis and Sjogren syndrome, rheumatoid arthritis, lupus is all there. Um And in our African American population, it's the Sarcoid. So the differential diagnosis, um you know, just make sure um especially the hyper pots. Um, it's important that we don't misdiagnose pheochromocytoma. I, I actually diagnosed one pheochromocytoma and it wasn't parts. Thank Lord. Right. But sometimes you just have to look at your checklist and say this just doesn't make sense. It's all flushing and tachycardia. There's nothing on the other side that would make me think this is spots, right? Um Evaluation tilt table testing. So we are all super out on tilt table testing, right? I'm trying to really change that. Um I think it takes you currently four months to get a tilt table test. It is an absolute disaster. And I just realized that the hospital at Sana forbids primary care position to order a tilt table test which is an absolute no go. And I just talked to administration today like no, this is a disaster. I'll read them. Someone else orders them right? Because it's so important if you have a chronically dehydrated patient, I just saw an 82 year old female and she goes like I have pots, I drink 18 ounces of coffee a day and eight ounces of water. I'm like mm mm Nope, not pots. Um So I made her drink 80 ounces of what might, what I tell them. Um What I tell them is you're not a bucket. We just don't dump 80 ounces of water in you and then think we are hydrated. It takes two weeks to get hydrated. Right. So you do two weeks of 80 ounces and you come back to them when you're still dizzy, then I might work you up for pots. Um, she came back. She's like, I'm fine. I'm like, good. I miss my coffee though. I'm like, no, don't start the coffee again. Um So the tilt table testing is really important to really discern for me. If it's pots, postal tachycardia, any pots, I will see him and I will treat him if it's neurogenic or vasovagal orthostatic syncope, much better s served with my EP partners. Right. And if it's just orthostatic hypotension, try fluid challenge, tilt them again, which is gonna be another four months and try what, how that works out for them then, um, it reduces a little bit the, the, the amount of consults we have this absolutely wonderful dis autonomia center right now, who does all the genetic testing that you do all your ad laws that Santero doesn't do right now. It's the center and takes forever at the, and I have flyers for you over there at that neurology, this autonomia center of Hampton roads. They do all the genetic A large D laws, all the genetic mas cell trip tase everything they do all the work up and they get a prior off by the insurance, tons of work of your staff and tons of work off of you because they go over the test results with the patient as well. And then they do all these subgenetic tests that I don't even know what, what, what they are so good for them. So they, they are my best buddies and they do tilt table testing as well. Fy, I, not bad. They have two nurse practitioners and I think one or two physicians, they are very well staffed and all they do see is just autonomia patients. Good. So I'm advertising for a nonsens area clinic, but I think we have to. Right. I feel like it's super important. Yeah. And my patients have gotten me really good feedback. They will te tell them if a test is not covered. Um, and some of these genetic testing, um I, I think is a little bit over the top but if they wanted how to treat the pots patients. So this is a, just a simple medical pathway actually, you know what, let me tell you how I do it. So these are, this is my recipe that I give to my patients before I do any medications before I do anything regardless if it's neurogenic hyper parts or deconditioned parts. I even do it for orthostatic hypertension. Um And it's important that you do it with as go over this with a patient with as much enthusiasm as you can. So, and here's what I tell him. You sleep elevated at a 30 degree angle. Get a wedge at Walmart, get a sleep number bed, whatever tickles you get it and when you wake up, open up your eyes, you sit on the side of the bed and you drink four ounces of an alkaline water. Why alkaline? Because they remember their sodium is up at night. Most of the um disorder patients, their sodium is up. So they have a ton of acid in their stomach and they get sick when they drink just regular water. So I tell them um to just drink coconut water, aloe water and alkaline water of some sort, room temperature, nothing ice cold. Four ounces lie back down and then comes these activation exercises that a group in um um um at um UC Berkeley actually um did in combination with um Navy Seals. It's an activation exercise that they do prior to combat. So it's uh you lie down and you start at your toes and you work yourself up towards the heart. So you scrunch your toes 10 times, you wiggle your ankles, 10 times, knees, hips, fingers, wrists, elbows, shoulders right the way you have to do it though. It's a grap release, grap release, grap release and you have to do it fast. So I try to do this. It's really hard. I'm so not a coordinator person. You have to be like a dancer of some sort in order to do this. It takes you forever to learn. So I think it takes my patients probably 33 months to learn this exercise. You have to do them really rapidly and really fast. So it's rapidly crappily scrap it, grab it, grab this like this, right. Try to do it with both legs is so frustrating. Then you sit on the side of the bed, drink another four ounces of water and you do the same exercise again. At that point, the patient's heart rate will be probably up in the 120 range. Then you slowly get up and you get preferably up at five o'clock in the morning and walk towards your shower, take a shower chair and we start with ice cold water rinses to activate your cortisone, right? So that's like the adrenal failure. We're trying to get the adrenal glands activated and is sitting in a shower chair. You go again from the distance up towards the heart. So ice cold shower rinses all the way up to the belly button 10 times. If you can't do it, just do it up to the knees. Um, none of my patients do it up to the belly button and then do the arms 10 times. And then a lukewarm hair wash, no warm water, warm water dilates, right? Remember Ayers De Laws, rheumatoid arthritis. They love the warm water, love it because it helps their joint, their joints hurt, they're constantly hyper extended, right? So I tell him you can't do this. Your A Los Dals will not suffer. I promise you it has to be ice cold. You don't activate your mast cells and you feel much better give vasal constrictions. So then they get slowly up, dry off again, you dry off from the legs upright. You're trying to mimic vaso constriction towards the heart and then I use a boar's hair brush. Why is that? Because the German study they did that with was Boar's hair. Ok. Of course, natural boar's hair and they thought it was the least allergenic brush they could find. Who knows. So then you do in a circular motion, you rub up towards your leg, rub up towards your leg, rub up towards your leg. And then when your skin is nicely red, you put on your compression compression again, I tell my patient is the most important part. Nothing works without compression. If you do not compress none of the water, the salt or the medications will work. So on a day where you do not compress, I can't treat you if they come to my office without compression. But they're telling me that compression stockings on the wash pretty soon, I will not see them because it's, they're constantly fainting. You know, you have to insist on compression if I know it hurts, I know it's very uncomfortable. So I tried with my Children and myself ad compression garments. Yes, I've 80 compression covers at my house. You're welcome to bore them. So, the best ones I personally found were Lulu lemon window compression tights. Why is that? Because they have this material where you sweat in the summer? It doesn't soak and cling on you, right? You can also wear them in the water and they dry off nicely. Gym Shark makes some and they're called Gym Shark adapt. Yes. Um and they are really good too. Then there's like subtypes for your patients actually come to you like, oh, I found this one. The male compression stockings, find male compressions going up to the hip. There are some out there. Right. Um, they do not need to compress the, remember, these are young women. They don't want to look disabled. Right? Would a regular beige compression hose be all perfect. Absolutely. But my patients are like 2022. Right? They wanna look cute. Um, they don't look cute in a compression garment. So the Lulu lemons, I tell them two or three sizes too small. Go to the store, try them on as tight again. Go buy them used on Facebook. Hm. You know. Um, I understand they're terribly expensive. Right. But my daughter got one for $10. Right. Not super bad. So you can be thrifty, right? And price is a big deal. These, these people were high functioning people. They can't work anymore. Right. Their money is tight. They don't wanna admit it, but they have really, really tight money So um really, really tight, they need to fit like compression socks, right? You cannot take them off your leg, very tight on particularly bad days. I recommend runners calf compression sleeves, kid size, extra, extra small. So those are these, you know what you see the marathon runners kid size I fit in an extra small. I put a little hole in it, put them on my arms, they really compress nicely. Um I got on my daughter five millimeters of blood pressure plus when she was standing, which was wonderful, she does have thought she was just dehydrated and was playing violin, right? So um but you get five millimeters HG with that, which is wonderful, right? That sometimes will make the difference in fainting and not fainting renal perfusion, brain perfusion or not. Then if it's really bad and remember really bad days are barometric pressure changes. You know, we all, even though when bad weather is moving in, well, my parts patients will tell you they are flat on their bed, right? Because they just can't adjust to these pressure, right. So on really bad days, I tell him wear your Lulu put on really tight compression, um knee socks, um put on your um arm, compression sleeves and wear an abdominal binder on top of that, right? And if that doesn't work, take them all off in the afternoon, do another ice cold shower and and put them back on. I know these days are really, really bad, I think two weeks ago, um I, I think I had like eight or nine patients. They called me offended, offended, offended, offended. I'm like, I know, I know more compression, more compression, more water, more salt guys just bear through it. It's not gonna be good and just reaffirm. I understand. There's a big weather front moving in. I understand. And they're like, oh yeah, thank you. Thank you for reminding me I'll try harder. Right? Um And sometimes it means that, you know, some of my patients do come with custom complete compression garments. They are 1500 bucks per garment. You have to have a lot of money in order to have like five compression garments, right? Um But they are wonderful, they are custom made, fully compressed everything. Um, and they really can function with this. They have zippers on the side. Um You can get them in all kinds of different textures, so very, very important. So once now you're at five o'clock in the morning, you have done all of this stuff right now. You have to start with food, salt and water, right? It's seven small meals a day. I started out with five. It should be really seven and it's small meals, nothing super fatty, um, high protein rapid absorption, make sure that you don't have food allergies. Sometimes I recommend elimination diets. I, I don't know what the best elimination has anyone a good, has anyone a good elimination. Diane, I tell him rice turkey and, um, broth for a week and then start reintroducing the vegetables and I hope I don't cause a nutrient deficiency. I mean, I don't know. Has anyone else done anything else? Chicken. Yeah. Chicken turkey. Yeah. Chicken rice. Turkey. Yeah. Yeah. So, um, I mean, it, it helps sometimes. Right? Especially if they have all the stomach issues. Right. Otherwise I just say, do, do your heart healthy diet oatmeal in the morning, try to avoid your chocolate. No coffee. Do ginseng Granules to wake you up in the morning. They really do help and wake you up. I tried it. It works um mushroom coffee. Huh? I did not wake up from it. Um And then just, you know, try to eat your small meals throughout the day. Fruit vegetables, little tiny, tiny portions so that you don't get tired and start drinking and it's visual drinking right after the age of 20 most of our thirst receptors are gone. So none of us can judge really how thirsty we are. We have to put it out. Parts of patients have zero thirst receptors. Apparently. So it's 100 ounce bottle. It goes with you all day and you have to drink consistently. You cannot drink in spurts, drink with a straw, you feel better when you drink with a straw because you can take more in and um drink consistent throughout the day. I tried every single day. You see me more like a big water bottle around. And today I'm like, at like happy morning, nine o'clock. I was like, oh, man, man, I'm a bad, it's hard. Right. So if we say this to our patients, they try to work, they try to be moms, they try to drink. If I can't do it as a physician. I, I understand my pro probably don't do it every single day either. Right. Salt intake. So salt intake, I was initially like Vanderbilt, very aggressive about salt intake. And I tell you, I think I've become less aggressive with salt. Why is this? Because intracranial pressure? So salt intake, I recommend until you're 30 after the age of 30 I've had now almost 40% of my patients develop high intracranial pressures on eye exam with 8 g of sodium, 8 g of sodium do rise your intracranial, especially if you have migrainous pots. That's when I start backing off. And I tell him do 4 4 4 g, average American diet, 4 g fine with me. Right. Don't go any higher, you know, don't eat your chips. They're not good for you anyway. Um Don't do the drip drop and now it's the drip drop firecracker, right? It's I think 1500 mg of salt um is the new thing in the pots come in, drip drop firecracker that they all like to take. I was like be careful over the age of 30. I would go real easy. Rather do more water and do V your water. Right? So, if we only drink regular water, a that's not good for the psych because they get very fatigued. Um, but you can do like alkaline water and coconut water and melon watermelon water and whatever water you can imagine. Put a peach in it, you know, put cucumbers in it to do, make it fun, right? Make it a challenge. Um So when they have this um exercise, Indian Rivers has a dis autonomia center. I love PT there. They are absolute the superstar of just autonomia. They will get my patients really to the point of walking. So just two days ago, I was so frustrated because I had like my fake orthostatic pots patients like 10 in a row and I was like, oh, I'm not even treating pots. This is horrible. And then comes in my patient who came in a wheelchair, she was on medication with a full compression suit. Her husband bought her a full compression suit, walking in, she walked in and she goes like, you know what helped me the most, the physical therapy, the water therapy, me being able to go from the water onto her common bike and exercise again. Uh It was such a good, she's like, I actually played with my 12 year old for the first time in two years. You know. Yay. You know. Yay. Right. So I was so excited about this. So then I we talked about, you know, what can you do from there? Right. What do I recommend horseback riding is for your pains in your belly? Super good. You know, there's a writing ring in Gloucester, a riding ring in, um, Chesapeake. They have both pots patients and they slowly write them in circle emotions and they love it. They say their menstrual blood loss has become so much better. Their belly pain and distension has become so much better. What can you do on vacation? Go on horseback riding, vacations, right? Do water parks, right? Do your rivers, you know, like what is like the Disney or whatever? Um What's the Busch Gardens? Not Busch Gardens in Florida has like, you know, or something like this in Florida at seaworld has like this endless river for like 25 you know, minutes, right? So one of my patients just came back. I was like, I went on a vacation with my family. I was in the river for like ever, but I like floated around with my kids and I felt really, really good. Right? Because water compresses, right? So you have to work with them. Should they go up in the mountains and hike? Absolutely not. Right. Should they go sit on the beach in the heat? Absolutely not. Right. Um So you have to work with them a little bit and these, what country thing is, whatever they go on is really cool because we want them to be tied back in, in their families. Right? We need them to feel like normal people again. These are most of the time women, right? But they need to become mothers, they need to become wives again. They need to feel like they're living a life again. And that really helps as well. Get out of this like fight and flight syndrome that they're having. So we have to really think about how we treat them. And the horseback riding is a Swedish study, by the way, um That took 60 parts. Patient. One did, um, recumbent bicycle, wanted horseback riding and the horseback riders did so much better than the recumbent bicycles. Uh huh. Um Then, um, I recommend the Orono Maya Project by Kelly Freeman. Um And, um, when they read this, they all find themselves in one way or the other in this book, which is really, really fun. And then I tell them, listen, I need you to be active right now. I'm here. I give, I give you tools right now and I need you to be active. So if you find a new salt supplement, which I have no 50 written down that you like if you find compression leggings that you like, if you find a sport that helps you, if you find a new study that helps you, let me know, right? Like they need to be empowered. There's a big giant Facebook community out there. They all talk, right? It's important that we are kind of involved in this and have top gain, right? So this is my baseline with every patient I do this right. And then comes medication. So, so it's real simple. If you have regular pots with tachycardia, I will start you on propranolol first. How many times does that help? I actually have two patients right now who are doing fabulous on propranolol. Good for them. It's 10 mg twice a day and they take this after all of their cold chow and after the first meal and once they have 40 ounces of water, so they need to really hustle in order to take the morning propranolol. So by nine o'clock they should be taking 10 mg of morning propranolol. Do not take it when you get up in the morning. Very, very, um, bad. Same thing at night. Take it right after you take all of your compression garments up, you go to bed, then take it. Um, if the propranolol is not helping and they have a nice positive tilt table test. This is the only time you can get coroner approved, you have to show a resting heart rate above 70 in your office. So they can't be really blocked down on propranolol. Make sure you tell them when they come to my office. Don't take your propranolol. If you are planning on taking them on putting them on Co Coron or then um uh, so resting heart rate more than 70 a positive tail table test that has parts features. So heart rate increase more than 30 for 10 minutes without a significant blood pressure drop. Then your insurance has no problem. I've never done a prior authorization for colon or it always goes through. Um, and again, that's something that more. I, I do. Right. I don't even, I, I'm totally fine if you send me a patient like this, I'm totally fine doing this. Um If they have more orthostatic symptoms, right? So heart rate on the tilt table test. Yeah, man, maybe went up 1015. It definitely went up but blood pressure more dropped. It's not parts really but it's clear some sort of disorder, noma, I start midodrine, right. Um If I think they have more neuro neurological symptoms, I will like cold hands, feet, numbness, tingling, lots of gastroparesis. I will try perros stigma. Um I very rarely use Fluto Cortisone anymore because of the adverse effect on intracranial pressure and worsening migraines. And I really don't think it's the right drug to do. Um So that's just my opinion on this. There's a bunch of other physicians who use it. It it can be used obviously, but you have to be very, very careful for the patients that have severe gastroparesis are in a wheelchair and really are trying with compression garments um and propranolol and still cannot maintain a meaningful lifestyle. I do put meta reports in, I do give IV fluids usually it's lactated ringers. I give a liter every Monday, Wednesday Friday. Um, very difficult decision. Right. I have two patients who I know I had mediport infection and sepsis on both of them are in the IC U. Um, both of them I feel comfortable giving it to them because they were in a wheelchair. Completely dysfunctional. Um, it's difficult because it's a big fix for participation. They feel immediately better. Um, but they don't do anything to condition them out of this. So they get very deconditioned. Um And they're asking for more and more, I mean, it's literally like, you know, you give them oxyCODONE. It's like I need lactated ring and roll 2 L every day. I was like, no, you can't have that. It's Monday, Wednesday, Friday. Um And then there are patients who can't even tolerate the infusion of the normal saline. They get violently sick because they can't have that veo dilation, right? So I realized that initially, I was like, this patient is absolutely crazy. I can't believe that she gets sick with IV fluids. And then I had five patients and then I had eight patients, right? And I'm like, I'm stepping back and going OK, something is wrong. And there's a study out of Portugal and that has shown that when you have significant nerve damage in your veins. IV fluids will actually really make you violently sick. They can't have that immediate dilatation. So you would have to drip it and over 24 hours, well, we can't do this. Infection rate would be too high. Right. So, for these people IV fluids don't work. Um, there is, um, for the significant neuropathic parts or significant sy sy symptoms, there's nosara doxy dopa, I can tell you this. I have never gotten doxy dopa approved. What's my fix for this? And um, this is what Doctor Kaminsky does at VCU as well. If we can get Doxy Dopa approved, we use Adderall. So I've started prescribing Adderall. I was like, oh my Lord, I'm prescribing Adderall. This is horrible. I'm a cardiologist. I don't like Adderall. Um but it does help, it doesn't help as good as stroy Dopa. It has maybe a 50% effect. It does get you through some of the really bad phases. Um and um methyl um Dober cloNIDine. Um I've tried to use a couple of times, especially if the patient has migraines um component. I, I don't really see a big um big problem. The biggest thing that I also do is I, when I put them in their categories, right? There's people much more above me with university system, much better than um the Lynch system at Sana. Um who I refer to and it's important to know where to refer to, right? So, Doctor Kaminsky is a neurologist. He strongly believes that every single this autonomia is a migraine. He will treat it as a migraine. He will give you massive amounts of migraine medication if you have migrainous pots. Yay for you. It really does help. He does a fabulous job and the patient's symptoms really do improve. So, I sent my migrainous coat hanger to Doctor Kaminsky. He does fabulous if you have hyper pots and a ton of mast cell activation problems with a lot of rashes my patients come back from him and go, like, I don't want that. I don't want him to have headaches, right? Um But he tells me I have a headache. I'm like, I know hang in with me. You go to Doctor Kamali at Cleveland Clinic. The time is three years guys for Ivig, right? If it's really mascle activation, autoimmune auto antibody, which he has to first prove and he will prove, then he will give you Ivig and there are significant improvement at five patients who are treated via telemedicine by him. He, they are doing fabulous for 1 to 2 weeks after the IVIG. It's every month, right? 3 to 4 weeks, they're back in the office telling me I don't feel so good. I'm like, can't you tell him to give me more? IVIG? It's like the same thing with IV fluids. No, I can't, right. You have to just suffer through this week. Three and four. If you want a more complete surrounding assessment, Vanderbilt is your center to go. Vanderbilt is the leading center right now in pods. Most of their um treatment is focused on a holistic approach. So what you're seeing with that little list that I have when I went to Vanderbilt, um I went there for a week on a seminar. This is what they told us to do, right? Um They will basically do what I do, but they have also super sophisticated testing. So they do all of their small Fathy testing there. They do all of the Cesar and sweat testing there. Um, they have a complete treatment team of a physical therapist and occupational therapist, a neurologist, a cardiologist in internal medicine. All come and see the patient. It's pretty impressive. Right. Wait time is 5.5 years. Yeah, by then, hopefully pots has gone. Right. Um, so these are the three centers that I really do like the most, the Du Autonoma Center is wonderful. It will only diagnose, it will not treat. Yeah. Which is, again, it's a resource, right? Because that's a couple more testing that I don't have to do. I don't have to follow up. I don't have to order and I don't have to do the prior authorization for it because my nurse was about to kill me. Um, so the one sub group that I asked you guys to send directly with our tilt table testing to me is the pregnant pots because our young population has pots. It doesn't mean that they're not sexually active. They do get pregnant and pots during pregnancy is an absolute disaster. Um We have six pregnant patients right now with pots. Um they're considered high risk patients. Um They should be on aspirin right away at um week 12. And um they usually do get a pick line from us if they are completely nonfunctional and they are monitored by EV MS and me on um a 2 to 4 week basis. Um We have delivered one successfully. She did have a syncopal episode right before and b um um movements were apparently problematic and got hyper perfuse. So they had to do an emergency section. Um It, it is really, really problematic. These blood pressure drops in real part patients when they get symptomatic affect the baby as well. So it's really difficult to counsel your young females to please while you're not having controlled parts of disorder, just please use contraception, right? Very, very important because they come to you so sick and they look like they never could have sex. Well, guess what they're pregnant now. I'm like, oh, because you know, you don't have to be upright, right? Um Yeah, so yeah, so it, it's important, you know, to have this conversation with your young patients, you know, the very ve very, very young patients. Um M most of the time. Um That's it. So um I do prescribe birth control. Yeah, I was like you have no PC P. Well, let me give you something before you see someone. Um Yeah, that's basically it guys um and the talk is gonna be um can be found online too so you can um download. Do you have any questions for me?
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