Understanding POTS | Postural Orthostatic Tachycardia Syndrome

Hey there, everybody, and welcome to this presentation on POTS, or Postural Orthostatic Tachycardia Syndrome. I'm your host, Dr. Donnelly Snipes. In this presentation, we're going to talk about pots, which is something you may have heard of or may not have, but it's surprisingly more common than you would think. We'll explore the definition of what POTS is and the symptoms, causes, exacerbating factors, and some interventions that people can take in order to help manage their symptoms. According to Dr. Sherilyn Driscoll at the Mayo Clinic Children's center in Minnesota, the social and economic consequences related to POTs are significant when you're talking about adolescents. Adolescent patients diagnosed with POTS may experience decreased school attendance, withdrawal from extracurricular, extracurricular activities, decreased academic performance, and truancy. So the same thing can be extrapolated to adults who may have decreased work attendance, withdrawal from hobbies and relaxation activities, and decreased performance at work and, and less involvement with the people that, you know, normally they would be interacting with. So how prevalent is pots? Well, 1 to 3 million Americans have pots. That's a lot. You know, it's not as common as some other things, but it's still a lot. It's approximately five times more common in women and is very common in healthy active individuals between 13 and 50, impacting 1 in 100 teenagers. So impacting about 1% of teenagers. That is a lot. And POTS is often misdiagnosed as anxiety. So the heart palpitations the person's experiencing and some of those other issues that we're going to talk about overlap with anxiety symptoms. And people with POTS often do start developing anxiety because when they have these tachycardia episodes or racing heart rate episodes, they don't know what's causing it and they don't know how to fix it. So that does increase anxiety to a certain extent. And we'll talk about things that we can do once somebody has a POTS diagnosis to help them manage their anxiety. But POTS itself is not just anxiety. It is actually caused by several factors. Autonomic neuropathy. Now, your autonomic nervous system is the one that operates automatically. It's the one that's responsible for your heart rate and your breathing and stuff you don't have to think about. So something is going on with those neurons, a hyper adrenergic state. So when something happens, like somebody stands up, suddenly, the body secretes adrenaline to get the heart pumping in order to get the blood from the feet all the way up to the brain. But in People with pots, the adrenaline dump, so to speak, tends to be excessive hypovolemia, which means they have too little blood. And this is one reason they hypothesize that it may be more common in adolescents, because they go through a growth spurt and their body is getting much bigger, but their blood volume may not have completely caught up yet. Now, they don't exactly know why, but that is one hypothesis. Venous pooling is another issue, where the blood pools in the lower extremities of your body. So when you stand up or when you move around and the body has to get the blood from your feet to your head and to your heart, it may have to work a lot harder. So it goes into that really fast heartbeat situation and deconditioning for people, like I said, it's very common in healthy, active individuals, which is one of the reasons it often gets misdiagnosed as angry anxiety. And people are just put on anxiety meds. But that doesn't end up usually resolving it completely. And people who are in good shape are used to being able to do certain things. When POTS starts to happen and they start having these tachycardia, these racing heart episodes, and the other symptoms that we'll talk about, they may refrain from activity because they're afraid they're going to give themselves a heart attack, or it just takes so much more energy because their body is responding in an exaggerated way that they may not have the energy to exercise as much, which results in deconditioning. So what the heart used to be able to do really easily is now harder, which can also trigger the tachycardia. Anxiety and somatic hypervigilance play significant roles in POTs. Patients with POTs do have a condition called somatic hypervigilance, meaning that they tend to report relatively mild or routine sensory information as more intense or distressing than the average person does. Now, we don't want to minimize their reality. What they are experiencing is their reality. If they are experiencing it as an 8 on a scale of 1 to 10, who are we to tell them that? No, that that's really only qualifies as a 2? Their autonomic nervous system is responding in such an exaggerated fashion that they are feeling something that is more intense. And it also starts becoming something that they pay more attention to, hence the word hyper vigilance. They become more aware of these sensations and they can focus on them, and those sensations can start to feel more intense, especially because when they focus on them, guess what? You focus on this sensation, this tachycardia is something that you don't feel like you've got control over. What's going to happen, your anxiety is going to kick off. As anxiety goes up, all of those symptoms get worse. So anxiety can actually worsen the somatic experience of the individual. Patients with pots, chronic fatigue syndrome and fibromyalgia all have overlapping symptoms and often describe a relatively normal life. They were just bebopping along, that was interrupted when they had some kind of flu like syndrome or some other precipitating event which resulted in them never being the same. So they were fine and then something happened. There are different types of pots, and what causes different types of POTS is different. Neuropathic POTS is associated with damage to the nerves that regulate the constriction of the blood vessels in the limbs and the abdomen. Hyper adrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine. In hyper adrenergic pots, there is often both increased blood pressure and, and heart rate. When standing in the other types of pots, that's not the case. A lot of times the blood pressure goes down and the heart rate goes up. But with hyper adrenergic pots, both of those go up. So that's one way to differentiate that type of pots. Hypovolemic POTS is associated with abnormally low levels of blood, and secondary POTS is associated with another condition known to potentially cause autonomic neuropathy. So problems with the nerves in that autonomic system, such as diabetes, Lyme disease, or other autoimmune issues like chronic fatigue syndrome. Some of the research that's coming out now indicates that POTS itself may have certain autoimmune components to it. So you want to recognize that because autoimmune conditions result in systemic inflammation, autoimmune conditions are worsened by, by physical and psychological stress. Therefore, we can expect that physical and psychological stress are probably going to exacerbate POTS for a lot of people, which helps us recognize what sorts of interventions may be helpful for people with pots. Many patients will develop POTS in their teens after a period of rapid growth, especially in males. And we'll see symptom improvement as, as age advances, as their body. You know, when people go through a growth spurt, you know, sometimes they have difficulty with coordination because everything grows at a slightly different rate. Well, the same thing, as I said, may be true with production of blood volume and that sometimes will, most of the time, will resolve on its own. Viral illness or serious infections can also cause pots. POTS may have Developed in those who have had a recent history of mononucleosis. It can also be caused by any sort of serious infection that leads to prolonged bed rest. Pregnancy can cause pots. When you're pregnant, obviously, your blood volume changes, and a lot of times when you're sitting and you're pregnant, your body has to work harder to get the blood from your feet all the way up to your head. So it's important to recognize. When I was pregnant with both of my children, I would have really bad POT symptoms be when I would be sitting still for a period of time, when I'd be driving, for example. And one of the interventions that my obstetrician told me was, when you're sitting, don't sit still. Try to keep clenching your thigh muscles and your gluteal muscles as you're sitting, because that will help keep the blood moving through your body. And it worked. You know, it didn't do everything, but it certainly helped a lot. Head injury, prolonged bed rest, and certain autoimmune conditions can also trigger the onset of pots. So what are the physical symptoms? I've alluded to them, but we haven't talked about them yet. High blood pressure or low blood pressure can be symptoms of pots. High heart rate and low heart rate can be symptoms of pots. And a lot of times with pots, it depends on the posture. You know, they may have a low heart rate most of the time, and then they move in a certain direction or they put their head below their heart or something happens. They stand up too quickly and their heart rate may go up, which is the tachycardia part of postural orthostatic tachycardia syndrome. They may have chest pain. It does not feel comfortable at all when your heart starts pounding like that. And. And for some people, they can even, like, visibly see their chest pounding, dizziness and lightheadedness, especially standing up, prolonged standing in one position, or on long walks. So that. That's an interesting thing. You would think that long walks would actually help keep the circulation going, but, you know, long walks can actually make things worse. So it's important for each person with POTS to identify what triggers their symptoms so they can make effective modifications. People may experience fainting or near fainting, abdominal pain, bloating, and nausea. Now, this is one you wouldn't associate with tachycardia, but it is a symptom of pots. People have a lot of, you know, just like when people are having a heart attack, sometimes they feel like they've got indigestion. You can see how something that's going on with your heart and your autonomic nervous system may also contribute to gastrointestinal symptoms. People who have POTS often have temperature deregulation. They are intolerant or have difficulty regulating their own temperature and may be intolerant to hot or cold. In even the slightest amount of heat, they may not be able to cool themselves off. And you'll see them start getting flushed or sweating, blurred vision, headaches, body aches, maybe feeling flu like and neck pain, insomnia and frequent waking from sleep, potentially with chest pain and racing heart rate during sleep or excessive sweating. Now, obviously you want to differentiate this from other things that might cause excessive nighttime sweating, like tuberculosis and menopause. But when you start putting all these symptoms together, you start seeing the development of a very definite syndrome, shakiness and tremors, especially with adrenaline surges. That indicates that you have that hyper adrenergic thing going on. Instead of having a, you know, mild adrenaline boost, you're having this adrenaline flood that is causing the, the shakiness and in your hands and potentially your legs may feel weak. Discoloration of feet and hands, especially like bluing in the fingernail beds. Exercise intolerance, what used to be easy for them may now be difficult. That could be partly due to deconditioning or, and or partly due to the body's inability to regulate its own temperature. And so when people go in and start exercising intensely, the person has difficulty handling it and so it makes them less tolerant to exercise. Exercise is more exhausting and they sweat a lot more. Excessive or lack of sweating and diarrhea or constipation. Now you see in a lot of these things it's extremes. High or low blood pressure, high or low heart rate, excessive or lack of sweating. Part of that depends on the type of pots, but also on the autonomic nerves that, that are involved in the POTS condition for that individual. Some people also have difficulty concentrating. Now, this is important. We just talked about the physical symptoms of pots, but there are also cognitive and emotional symptoms. Difficulty concentrating can be caused by reduced cerebral or brain blood flow during excessive sitting. They did a study and found that there was reduced cerebral blood flow following an extended stress test in the POTS group. And it was similar to that seen during orthostatic stress. So similar to changing positions like standing up too fast, they also saw changes in the cerebral blood flow in people who were sitting still for long periods of time. Think about how that might apply to college students, to high school students, to people whose work keeps them Sitting for long periods of time. When your cerebral blood flow goes down, you start to feel tired, you start to feel foggy headed, confused, have difficulty concentrating because you're not getting enough oxygen and blood to the brain. People with POTS may have forgetfulness or difficulty finding words. You know, suddenly they feel like there's, quote, space cadets. And a lot of this may be due to the lack of effective blood flow to the brain and oxygenation. They may have trouble focusing or brain fog that can be caused by a variety of things. Sleep disturbances contributes to it as well as lack of adequate blood flow to the brain. And finally, they may experience exhaustion or fatigue. And I know this is, I told you this was the cognitive and affective dimensions of, of pots. But exhaustion and fatigue are symptoms that are so very common in people with depression or anxiety. So a lot of times, as I said, POTS gets misdiagnosed. POTS symptoms may also get worse when the person gets a common cold or an infection or is under a lot of stress. You know, like my daughter's going through finals week, she's under a lot of stress right now. POTS symptoms can prevent a person from being upright or for more than a couple of minutes, which greatly affects all aspects of personal school, work and social life. Think about what it's like if you can only be upright for a few minutes before you start feeling lightheaded, before you start feeling dizzy or exhausted and you have to go lay back down. You know, that can be very impairing on a lot of activities because, you know, you can't get up and go to a movie and be out for two and a half hours without getting overly exhausted and starting to have symptoms. So it's important that significant others of people with POTS and employers and teachers are also cognizant of this invisible disability. You know, it's not something that you're going to see on the outside. You're going. Doctors can see it with tests with EKGs and, you know, different tests, but it's not something the average person will look at somebody and go, oh, that, that person's got POTS there. So I understand. POTS patients use three times more energy to stand than a person without pots. So think about how much energy it takes to get up and sit down and get up and sit down. Multiply that times three. So moving around, you know, taking care of a baby, for example, when you've got to get up and get the baby and feed it and dress it and do whatever and tend it and you sit with it, then you've got to stand up and pay attention to how much you stand up and sit down throughout the day and how exhausted you are sometimes when you've had a particularly busy day. And then multiply that times three and think about how exhausting it must be. So people who have POTS do need to be cognizant about their energy expenditure and learn how to prioritize things. Now, the good thing with POTS is a lot of times the symptoms will remit as stress goes down. And maybe with certain medications, once they get it under control, there may be exacerbations of it. There may be times where the POTS is worse because of an infection or other things that we'll talk about. But there will also be periods of life where they feel relatively symptom free and they may start getting their energy back, which again, is why it's so important for people with POTS to keep a journal of the things that seem to trigger the episodes, and so they can figure out how to plan around or avoid those things. So what makes POTS worse? Time of day? Symptoms do tend to be worse in the morning for people, partly due to blood volume and things like that. But also sometimes people do have more anxiety in the morning. They're dreading going to work, or they're, you know, they get up and they're dreading, or they're anxious about whether they're going to have an episode or a good day or a bad day. So recognizing what times of day your energy levels are highest is important. And recognizing what times of day you tend to be more susceptible to symptoms is also important. Rapidly moving from a lying or sitting to a standing position can make it worse. So it's important for people with pots, even when they're asymptomatic, to, you know, not bolt up, not jump up to go do, to run and turn the stove off or something. They need to get up gradually so their body has a chance to adapt to it. Dehydration will make POTS worse. When you get dehydrated, your blood volume naturally goes down. Environmental heat can make POTS symptoms worse. Environmental heat triggers that autonomic nervous system. It triggers your body to try to cool itself off. Well, people with POTS have difficulty with that, but, or, and if they have difficulty controlling their own heat and they sweat a lot, then not only are they increasing their heart rate as, as they're exposed to the heat, but they're also becoming more dehydrated, which may lead to lower blood volume. Alcohol causes blood vessels to widen, therefore lowering blood pressure and can make POTS worse. Exercise or physical exertion now, this is another one of those that's kind of a sticky wicket because one of the main treatments for POTS is increasing exercise slowly. There are a lot of protocols that show that increased cardiovascular fitness is useful for helping manage pots. However, pushing it, exerting yourself over what you're used to can trigger POTS episodes in women. Menstrual periods, prolonged bed rest or deconditioning. Prolonged standing or sitting. You know how when you're standing in line at the grocery store and you can start to feel the blood kind of pool in your feet, you can start to feel your feet swell. Or when you're doing dishes, if you got a lot of dishes to do, these are the times I feel my feet swell. Or if you're sitting for a long period, again, you may have blood pooling in your lower extremities, which can set you up for attack a cardia episode. Stimulants such as tea, coffee, alcohol and nicotine. Now the jury's out on that one. For some people, stimulants actually help a little bit. Not that I'm recommending you use them. Always check with your doctor. But for a lot of people, the stimulants put extra stress on that autonomic nervous system, which makes their symptoms worse. Blood sugar spikes also put stress on that autonomic nervous system and your HPA axis and can trigger an adrenaline response. So it's important to regulate blood sugar and any kind of illness or pregnancy. Anything that alters the, quote, normal functioning of the body and put stress on the body can exacerbate POTS symptoms. So how's it treated? Well, first you got to get it diagnosed, and then doctors can work with you to do a variety of things. If you've got low blood volume, they'll help you do things to improve your blood volume. They'll examine why it's low and figure out what they need to do. They may put you on medication that helps the kidneys retain sodium. Flujocortisone is one of those medications. Increased mineral corticoid receptors activity, inhibits the HPA axis activity, promotes slow waist, slow wave sleep, reduces anxiety, and switches circuit connectivity to support coping. So increasing the activity of the receptors that flutrocortisone activates actually has a lot of really positive benefits for people with pots. Mineral corticoid receptor agonists. So flucortisone was found to enhance the effectiveness of antidepressants that people were on and to improve memory and executive functioning in young depressed patients. So there's a lot of really Good research out there about this particular aspect. Now sometimes doctors will start by telling people to just increase their sodium. That needs to be done under, under a doctor's supervision because obviously you don't want to be sodium sensitive and prompt hypertension or other problems. But some doctors may start out with the non medicinal approach. Another medication type may be designed to reduce heart the heart rate or block the effect of the adrenaline hormones on the heart. And those are called beta blockers. So to stop that tachycardia from happening, people may be given beta blockers or they may be given medication to improve the blood vessel constriction. So they have blood vessels that are actually pushing harder to get the blood up from the extremities. Other interventions Exercise As I mentioned, there are very definite prescriptions for exercise for people with pots to make sure that they're not overdoing it, but they're gradually improving their cardiovascular health. And as I mentioned, isometrics, that's when you are sitting still and you are tensing and relaxing your muscles. That helps move the blood throughout the body. Heat management Getting things in your environment that can help you manage your body heat, whether it's a one of the little desktop swamp coolers or a fan or an ice pack that you, you put or a cold, cold cloth that you put on the back of your neck. A lot of times people with pots, if you put an ice pack on the back of their neck could actually trigger an episode unless you get doctor's approval. Obviously you don't want to do that. But figuring out ways to manage your heat so you are not setting yourself up. Managing health related anxiety and chronic stress with cognitive behavioral therapy. As I said, a lot of symptoms of pots look like symptoms of anxiety. And when people are regularly trying to get help for it, to figure out what's causing it to control it and getting told it's quote all in their head, it increases their sense of hopelessness, helplessness and anxiety when they start to have episodes. If it's uncon, when it's uncontrolled, they may also have anxiety that is, you know, going to get worse, that they're not going to be able to control it, that they're going to have a heart attack which increases their anxiety as well as their hyper vigilance or attention to, to any signs of tachycardia. So cognitive behavioral therapy can be very helpful at managing some of the health related anxiety thoughts. Sleep hygiene is another intervention. Obviously good sleep is going to allow the body to rest and repair and you know, help Those adrenals recover too. But sleep hygiene has been also found to help. If people elevate the head of the bed 6 inches to reduce urine formation overnight and increase fluid volume and circulation in the morning, this may help people wake up more easily. And they're not meaning a wedge pillow, they're meaning actually tilt the entire bed up 6 inches. Circadian rhythm regulation can also be extremely helpful. Your circadian rhythms are involved in more than sleep. Your circadian rhythms also help regulate your HPA axis and your adrenaline and your norepinephrine and your cortisol levels. So if those are out of whack, then it's going to potentially contribute to a worsening of pot symptoms. So making sure that you're getting up and going to bed relatively the same times each night, not taking excessive daytime naps, you know, really again, paying attention to sleep hygiene and learning more about how to regulate your circadian rhythms. Compression garments like compression stockings can be helpful. For some people, increasing sodium in their diet is recommended by their doctor. Drinking two to two and a half liters per day of fluids, but not all at once. Spread it out. If you drink a whole bunch of fluids all at once, guess what? You're going to wash out a bunch of that sodium. So you want to hydrate throughout the day. Small and frequent meals are better tolerated and tend to reduce POTS symptoms, partly because it is maintaining the blood sugar a little bit more stable, but partly you also don't want a lot of pressure on your diaphragm and from an excessively bloated stomach. Diet with high fiber and complex carbohydrates may help reduce blood glucose spikes. And it's important for people to plan backup meals. And not just meals, but have backup plans for things like laundry. Because sometimes if you're having a flare up, you may not have the stamina for shopping or laundry or doing things that actually do have to be done. So you've got clean underwear to wear to work or whatever. It is important to examine what types of reasonable accommodations would be helpful for you at home and at work in order to maximize your sense of self efficacy and your personal empowerment and maximize your ability to do what you think is important in your rich and meaningful life. And above all, pace yourself. Today is going to be different than tomorrow and was different than yesterday. So it's important to practice mindfulness and be aware of when you're starting to feel stressed or run down or adrenally, as my husband calls it, shaky, and make modifications right then, not wait until you're starting to have episodes. POTS is an extremely common and frequently misdiagnosed illness. It's often misdiagnosed as anxiety. POTS is an invisible disability that impacts every area of life, which can lead to impaired self esteem, depression, anxiety, guilt, grief, trouble in relationships and secondary health issues. It's really important that people with POTS get an accurate diagnosis and then learn what they can do to manage their condition because it is totally manageable. So. And when people are unable to go out and do things with their friends like they used to, that contributes to guilt and depression and a sense of isolation. And they may grieve the loss of that footloose and fancy free life that they had before they developed pots. And it's important for them to be able to process and work through that. Like emotional dysregulation, somatic hypervigilance is misunderstood and often invalidated. When someone reports a symptom, then we need to understand that how they're experiencing it is how they're experiencing it. There's no should, you know, it doesn't, it's not helpful if we tell them that, well, looking at your chart, you should only be feeling like a two and it's, and you're reporting it's an eight. They're not making it up, they're not being hypochondriacs. They are actually experiencing these symptoms more intensely. Advocacy, health literacy enhancement goal setting strategies, cognitive behavioral tools and awareness of Americans with Disability act accommodations can be essential to helping people with POTS live a high quality, rich and meaningful life.