Living with POTS Postural Orthostatic Tachycardia Syndrome

Hey there, everybody, and welcome to today's presentation on living with postural orthostatic tachycardia syndrome, otherwise known as POTS. I'm your host, Dr. Donnellice Snipes. Between 1 and 3 million Americans have POTS at any point in time. This syndrome is very common in healthy, active individuals, but between the ages of 13 and 50 and impacts nearly 1 in 100 or 1% of teenagers. So think about that. Think about the average high school. There are a lot more than 100 teenagers at that high school, and one out of every 100 of them likely has pots. So this is something we need to be aware of because it impacts all areas of a person's functioning. POTS is life altering, but is generally not life threatening, except for injuries incurred due to fainting. People with POTS have episodes where they will faint, so walking up and down stairs, taking a shower, driving a car. There are a lot of activities of daily living that we typically take for granted that can become very dangerous very quickly for someone with pots. POTS impacts more people than multiple sclerosis and Parkinson's disease and causes quality of life issues analogous to congestive heart failure. POTs, unfortunately, like congestive heart failure, is what we call an invisible disability. You can look at somebody sitting on a chair and not see anything wrong with them, but when they have pots, there is or congestive heart failure, they obviously do have something wrong with them. Patients with POTS have a condition called somatic hypervigilance, meaning that they tend to report relatively mild or routine sensory information, that is information that those of us who are neurotypical would report as mild or routine. People with POTS may often report those sensations as much more intense or distressing. So it's important for people with POTS to be aware of whether they are bothered, troubled by sounds, maybe things that are normally not bothersome to other people are too loud or too high pitched or too low pitched. For somebody with pots, noise canceling headphones can be one way to deal with that. Earplugs in certain circumstances can be another way to deal with that. Now, obviously that doesn't work for somebody who is in a classroom and maybe they can hear the sound of the chalk on the chalkboard. I don't know if anybody even uses chalkboards anymore, but we'll go with that example. Now, obviously that's something that may not be able to be altered. So it's important to try to figure out what accommodations, if any, are available for that person. Maybe if they sit further away from the chalkboard, it won't be as Loud. You know, it's important for the person to experiment sometimes because there may not be any prior identified accommodation for that. Smells can be really powerful for people with pots. My daughter has pots and she can tell we have a two story house and she'll be up in her room and if I use bleach, even the slightest amount of bleach on the kitchen sink, she can smell it. I mean, she has this super sniffer and it starts to give her a headache and make her feel nauseous. So obviously we don't use bleach in our house anymore. A handheld fan can be helpful for people if they're in environments where they can't control what people use. So if they're on a bus or something and somebody sitting next to them has a really strong cologne or antiperspirant on, they can use a handheld fan to kind of disperse the air. Sometimes that helps. Can counteracting smells can sometimes help. So something that they can inhale that smells more pleasant to them, that's not as caustic to them. Sometimes a mask can help because it filters out some of the smell. Now, masks don't seem to do a lot to help filter out smells, but some people report that it does help. Some sometimes leaving. There is a point at which the person with pots has to make the choice about whether they continue to stay and subject themselves to that smell, which is likely going to exacerbate their symptoms, potentially give them a migraine, and their quality of life for the rest of that day may decompensate or just leaving the situation sites. Now, this is kind of a weird one, but especially like bright sunlight or flickering fluorescent lights can be very triggering for someone with pots. Making sure that people have sunglasses, the blue from digital devices can be and from some fluorescent lights can be overpowering to people with pots. So even getting regular glasses, clear glasses that have a blue blocker on them can be helpful to reduce eye strain and reduce distress caused by the blue light. When some people are in a car and they are driving along the road or even riding, maybe they're a passenger and they're going through an area where there are trees and the sunlight is dappled, it's coming through the trees a little bit, it can feel almost like a strobe light, which can contribute to headaches and nausea and dizziness for people with pots, if you have that issue, sometimes sunglasses will stabilize the light enough. Other times when you're in those situations, you may need to be able to close your eyes so you are not Triggered and you don't get as nauseous touch. Another one of those sensations that can be heightened for people with pots. Temperature. People with POTS have a lot of difficulty regulating their temperature whether it's too hot or too cold. So it's important if they tend to get cold really easily to make sure to dress in layers and maybe have a heat pad during the winter, have warming socks. All of those things can be helpful if they get overheated too easily. Having a cold pack with them at all times and sometimes having in your emergency bag an instant cold pack, you don't want to use those all the time because they're crappy for the environment. But in a pinch, if you all of a sudden are, you know, stuck at work or stuck on an airplane and you start getting overheated having something, and I don't know if you can take instant cold packs onto an airplane. So, you know, have to check that with tsa, but making sure that you have options on an airplane. They do have ice. We do know this. So a reasonable accommodation could be to ask the flight attendant to get you a cup of ice and bring your own little Ziploc bag. Fill the Ziploc bag with ice and then you can put it on your wrists, which can help cool you down. Pay attention to your clothing materials too. Some people with POTS some of the time won't have an issue, but when they're having a flare, they may become more sensitive to materials that are rough or itchy or, you know, bothersome in some way. They may become hyper aware or hypersensitive to the stimulus input. They're not making it up. And it's important, important we recognize this. Their sensory wiring, if you will, is heightened. So they are feeling these things more intensely and they are more powerful or overwhelming to them than they are to someone who is what we'll call neurotypical. So let's talk about some of those physical symptoms of pots. A lot of people, or a lot of the focus with POTS is on physical symptoms. So we're going to start there because the physical symptoms cause significant alterations in activities of daily living that end up leading to some of the emotional distress and relationship issues. So what do we do? People with POTS tend to have difficulty with either high or low blood pressure, high or low heart rate and dizziness. So their autonomic nervous system, which regulates the blood pressure and the heart rate, doesn't work like it's supposed to. And when your blood, when your heart is not getting the oxygenated blood to where it needs to be in the body when it needs to be there, you get dizzy. A lot of people with POTs have issues with blood pooling in their lower extremities or, you know, sometimes in their hands, but mainly in their lower extremities. Compression garments can be worn as recommended by their doctor. I'm not a medical doctor. I am not recommending that. That is something to check out with your doctor. Vagal nerve massage. Now, your vagus nerve is directly related to your autonomic nervous system. Your vagus nerve, one of the places where you have receptors, if you will, are right in front on the little flap in front of your ear, right inside of your ear, in that little cup shape and right behind your ear. So some people find using two fingers, one going in front, one going behind, and gently, gently rubbing, not pressing, rubbing, but just gently massaging and then down the neck can help stimulate the relaxation response. Doesn't work for everybody. Can't hurt to try once or twice if you think that might help. Breathing activities also can help down regulate the autonomic nervous system and help get that heart rate down, help get the blood pressure down. When you breathe, you know, it's not just your normal breathing. You're going to breathe in slowly for a count of four to eight. You're going to hold for a count of four, and you're going to exhale for a count of four. So you're really slowing down your breathing. When you do that, it triggers the rest and digest mechanism in your brain. So your brain starts to slow down your heart rate. Yoga is another activity that is great for strengthening the vagal response, for giving people more control of your vagal response. When you're doing yoga, you are moving your body through various positions, but you're also concentrating on slow, controlled breathing and maintaining your heart rate. The goal is not to get a racing heart rate. It's not like when you're, you know, lifting weights or something. You want to maintain slow and controlled. Sometimes people need to lay down and raise their feet above their heart. And this can be embarrassing for some people if they are at work and they have to lay down. I know for me, I don't have pots. I have something called supra ventricle, ventricular tachycardia. But when I have a tachycardia episode, the only thing that can get my heart kind of slowed back down and into rhythm is laying down flat on my back and getting my feet up, you know, well above my heart. And usually in 20 seconds or so, you know, it gets Back into sync. But when I have to do that, yeah, it's. It's embarrassing sometimes, even if I try to make it look like I intended to do it, like I'm at. I'm at the gym, and then I immediately go into crunches or something. So recognizing that this is something people with pots may have to do if you're at school, if they're at school, you know, where can they do that? That is not going to draw attention to them. They don't have the luxury of walking out of the room down to the nurse's office to do it, and that ain't going to happen. So they need to have a place, whether it's the teacher's office or, you know, a quiet corner. Salt pills or medications as directed by the doctor. There are a lot of medications that are available that can help with some of the pot symptoms, although they don't tend to do everything. And some of them have side effects, unfortunately, like increasing fatigue. Salt pills. I know we've always been taught that salt is bad for you, but for people with pots, they have difficulty regulating their blood levels and the. And their hydration levels, basically. So salt pills are very helpful for a lot of people with pots. And again, don't just randomly go out and say, oh, let me try this. Clear it with your Dr. Canalith. Repositioning maneuvers can be very helpful for dizziness and vertigo. These are not things you do by yourself, but can be done with a physical therapist. And physical therapists, and even some, like doctors of osteopathy, have been trained in it. But physical therapists are used to helping people work through these maneuvers that can help with dizziness and vertigo, shakiness and tremors, especially with adrenaline surges. Recognizing when you're feeling shaky because of an adrenaline surge, that means your HPA axis, your threat response system, for whatever reason, kicked off. It could be because of heat. It could be you were startled. It could be your blood sugar got too low, could be because you got scared about something. But when you have an adrenaline surge and you start to get shaky, that is not uncommon. Being able to recognize that that symptom is associated with an adrenaline surge and use techniques like slow breathing to down regulate your HPA axis will help. And that feeling will often pass in, you know, 10 to 15 minutes. Now, shakiness and tremors, if you've never experienced. If you don't have pots, think about a time when maybe you've been run off the road by another car and you had this adrenaline surge and you could hardly Control the shaking in your legs to continue driving. That's what we're talking about here. And unfortunately for people with pots, that occurs pretty often. Temperature deregulation is another issue for people with pots, and I alluded to this earlier, ideally you want to maintain an even temperature, but that just is not practical a lot of times, partly because at work, going to your car at home, you may not be able to maintain a certain steady temperature. Like right now, it's like 96 degrees outside, and it is, you know, a nice, pleasant 75 inside. So going from inside to outside, your body goes, whoa. Well, somebody with pots, their body doesn't know how to react to that, and that's like an extra intense shock to their system. So it is important to try to maintain an even temperature if you're. If you know you're going to go into a significantly different temperature. Figuring out ways like if you know, you're getting ready to go outside and get in a hot car and have to go somewhere. Making sure you have your ice packs with you can be helpful. Keeping a personal fan with you. Not only can that help blow away odors that are offensive, but it can also help cool you off. A spray bottle with water. Now, if you wear makeup, that may not be the ideal solution, but you can also spray the back, your neck, or the front of your neck, or both. Or a cool cloth, not a cold one, on the back of your neck, can help you cool down a little bit. It's like your own swamp cooler, if you will. Instant cold packs I mentioned before, those are sort of your last resort. If you can keep a regular ice pack in the freezer at home, in the freezer at work, in the nurse's office, at school. So you can use those when you need. You can get really nice gel ice packs that you can wear on your wrists or around your. Around your midriff that can be relatively inconspicuous so you know you're not. You don't have this big old ice pack when you go back to class or go back into your. To your desk. They also make ice vests now, and some of them look like, you know, what you would see from somebody directing traffic, but others are much more. They look more like something somebody would wear when they're hiking. They are not inexpensive, I will tell you this, but they are worth their weight in gold, in my opinion. For people who get hot really easily, whether it's because of pots or menopause, the ice vests they've created technology now where some of these ice Packs can actually stay cold for up to eight hours. So that is really helpful for people who struggle with heat issues, but they need to go on about their day, they need to be able to go shopping, they need to be able to do these other things. I already mentioned warming socks and layers if you get cold really easily. And heating pads. Just like you can have instant cold packs, you can have instant hot packs. They're chemical, they're not recyclable, so not something you want to use every day. But having a clay heat pack at the office, at school, wherever that you can pop into a microwave and use to help warm yourself up can be very helpful. Sitting, standing and walking. People with pots may not be able to sit or stand in one position for long periods because the blood starts to pool in their feet and they start to feel dizzy. Extended walking, even whether they're shopping or they have to walk a lot at work or walk to class if they're in university, or even during extended walking for exercise can be a trigger. And you may think, well, they're standing, they're moving, it's moving their blood. Well, yes, but gravity is pushing all of the blood down to their feet. So even extended walking can be a problem for people with pots who's because their heart has a hard time getting that blood up and keeping things in balance the way it should be for people with pots. Get up slowly. Don't jump up from your seat, don't sit up when your alarm goes off and immediately jump out of bed. That is probably a recipe for dizziness. When you are sitting for an extended period of time, whether it's in the car, while you're watching TV at a movie, standing in line at the grocery store, tensing your leg and glute muscles can help reduce blood pooling. Shower seats and kitchen seats can be really, really helpful. Shower seats, especially when people are in the shower, it's already slippery. So ideally get some of those non slip little things to put in the shower. But people with pots have difficulty raising their hands over their head and not getting dizzy. So especially if you've got long hair, raising your hand over your head and keeping them up there long enough to wash your hair can actually trigger dizziness. Shower seats can be helpful for that. Or changing it up and actually washing your hair in the sink like your grandma used to do can be another accommodation that you can make. Kitchen seats. Now obviously the kitchen is a little bit different, but when we're in the kitchen, when we're cooking, we do tend to be on our feet for a while, especially if you're making a meal. And it can be important for the person to be able to sit down and sort of wheel themself around if they start getting start getting dizzy. Avoid high heat showers or hot baths. High heat causes the blood to pool in the extremities. When you start to get overheated, the blood moves out so your core doesn't get overheated. So avoid those. Avoid saunas, avoid hot tubs unless recommended by your physician. Install grab bars and you can install these wherever. I mean definitely by the shower, ideally by the toilet, but anywhere else where you may need to move from a sitting to a standing position and risk getting dizzy. You might want to have some sort of grab bar or support that you can, you know, kind of put your hands on if it's a table or what have you to prevent yourself from falling. Arrange your home to limit overhead reaching and climbing in our house, you know, we have the cabinets and above our stove is where I keep all of our spices. Now I don't have a problem 95% of the time reaching over my head, so it's not as much of an issue for me. But my daughter is shorter than I am, so reaching up over her head to get the spices from on her tiptoes from above the above the stove is can be a problem. And that can trigger her pots definitely. If she's, you know, I don't want her climbing on stairs or chairs in order to try to get into the tip top cabinets to get stuff. So try to arrange your house so most everything is at eye level or down to like waist level. When you have to go down to the lower cabinets, don't bend over. Squat down and then when you stand up, stand up slowly and ideally with support. So instead of just popping back up, put your hand on the counter and slowly stand up. Compression support hose and abdominal binders can be helpful, but make sure to get doctor's clearance before using any of those. People with pots often struggle with abdominal pain, bloating, nausea and ibs. They haven't figured out all the reasons for this yet, but one of the reasons they suspect is because when we eat large meals, it diverts large amounts of blood to our gut for the digestion process, which causes people with hypovolemia too little blood to start to experience problems. So eating small meals avoids diverting too much blood to the gut. Sipping water and or sports drinks as recommended helps people stay hydrated, keeping their their water levels in balance, and it also prevents them from Guzzling where their stomach may start to feel bloated and then trigger nausea. Explore foods that might trigger GI distress. Gluten, dairy, spicy foods. It's different for different people. There is a high correlation between people with POTS and people who have Crohn's disease, but it's definitely not a one to one correlation. So gluten doesn't bother everyone, nor does dairy. Be aware of what bothers you. Pay attention to eating to nurture your gut bacteria, including probiotics like you would find in yogurt and those sorts of things. And then also prebiotics, which you'll find in fiber like inulin and antioxidants, which you'll find in colorful fruits and vegetables, nourishing those gut bacteria. We are starting to figure out that our gut communicates through our vagus nerve to our brain to let our body know what's going on. And when the gut bacteria get out of whack, when that gut microbiome gets out of whack, it can send false signals basically to the brain. People with POTS struggle with blurred vision and headaches. Well, sometimes this is not going to be adaptable. You know, obviously if you need glasses, wear glasses. But on days where your vision is just blurry or you've got a migraine, avoid having to focus as much as possible. It might not be a day that you can do a whole lot of reading. Headaches can cause blurred vision and blurred vision can cause headaches. So if you've got blurred vision, minimizing how much you have to focus in order to prevent headaches is one way to prevent your day from kind of spiraling downwards. Guarding may also cause muscle tension and headaches. And what I mean by guarding is when we get dizzy or when we're afraid we're going to get dizzy, we tend to be more tense. And when we're tense, especially if we're tensing the muscles in the upper back and the neck, it can contribute to the development, and in the jaw, it can contribute to the development of headaches. Being aware of your muscle tension, progressive muscular relaxation exercises can be super helpful for people, not only because it helps you become more aware of where you've got muscle tension, but the tensing and releasing of muscles that you do when you're going through progressive muscular relaxation also helps pump that blood around exhaustion. POTS patients use about three times more energy to do things just like standing than a healthy person. So it's three times harder for them to walk and to stand in terms of energy expenditure than somebody without pots. That's a lot. Handicapped parking placards are available for people who need them. Not everybody with POTS needs one, but for those who do, they are there. Mobility scooters can be necessary for some. Again, POTS is on a continuum. Not everybody is going to need a mobility scooter, and people who do may not need them all the time. One of the biggest challenges with POTS is to avoid deconditioning. And it sounds counterintuitive, but one of the treatments for POTS that's recommended for most people is physical exercise. But it is very slow, gradual physical exercise. And there's a very specific protocol to help people avoid deconditioning. When we decondition, our heart becomes even less able to move that blood around. So we want to make sure that people with POTs are able to maintain as much conditioning as possible to keep their heart as healthy as possible, despite the fact that they have dizziness. So one of the things, one of the activities that people with POTS may do for exercise is recumbent biking. That's when you see sit in the chair and you pedal. Some people will use a rowing machine. Other people find that the activity of rowing actually makes them dizzy. So it's really up to the person. There are also the, I call them arm cycle machines that people can do. And it doesn't look like it would actually be that tiring, but trust me, it is. I had a knee injury a while back and I did the arm cycle during the period where I couldn't use my leg and it was way more tiring than I thought it would be. So there are a lot of things that can help people maintain their conditioning. Mobility scooters can be used when needed, but shouldn't be overused. Have a go bag containing, or I call it an emergency bag containing all of the items that you may need, so you don't waste energy trying to find your stuff or you don't get trapped out somewhere without something that you need. When my son was little, we used to have a spare diaper bag in the trunk of the car that had spare binkies, spare diapers, spare everything in it. So if the diaper bag I had wasn't sufficiently packed, we always had a spare. So we had our go bag and we had a spare, so we were extra prepared. But that can also help reduce anxiety about going out places, because you know that, okay, I've got my go bag with me, but if I should have misplaced something or forgotten something, I've also got a spare in the car. Reduce your activity load and Plan activities for the time of day that is best for you. For people with pots, they find that morning actually is particularly difficult. Not for everybody, but for some. So know when your most difficult times of the day are and try to arrange your activity around that. For work. That can mean, you know, arranging your work schedule for school, getting classes that are during your preferred time. And there are. POTS is a disability. And it's important if you are in school or if you are employed that you connect with your disability services coordinator at school or your HR person at work for reasonable accommodations as needed. You do have the right to those. According to the Americans with Disabilities Act. Exercise intolerance and deconditioning can be an issue. A lot of people, as I said in the beginning, when they developed POTs, were active individuals. So getting POTs is a dramatic change from what they used to do. And it can be very frustrating, to say the least, when you can't do those things that you used to. Swimming and recumbent biking, as well as strengthening of the abdomen and legs, have been found to be most beneficial. Again, do this under the supervision or the advice of a physician. Insomnia and frequent awakenings from sleep, unfortunately, these are not all overly controllable for some people. When the autonomic nervous system decides to kick off, it can be. You just have to recognize what's going on. Some things that have been found to help elevate your head during sleep, to help recondition the body to orthostatic stress and reduce gastric reflux. So actually elevating, ideally elevating the entire top of the bed so you're almost at a. At a little bit of an incline. That's not necessarily possible for everybody. Some people have found adjustable beds to be helpful. Wedges, from what I've read, have not been found to be overly helpful, but it's up to the individual and stabilize your circadian rhythms. Your circadian rhythms regulate in part that with that autonomic nervous system, your circadian rhythms tell your body, hey, when it's time to wake up, we're gonna secrete the most cortisol that we're gonna have for the day, and, and it's going to decrease throughout the day. So if your circadian rhythm secrete that cortisol at the wrong time, then you're going to have that surge at the wrong time, and it may wake you up from your sleep, or you may wake up and still feel groggy. So trying to stabilize your circadian rhythms can be huge. That means not only making sure that within about two hours before bed, you get rid of the blue light, but you have a sleep routine and you pay attention to your sleep hygiene. Affective and cognitive symptoms. People with POTS often have difficulty concentrating, forgetfulness, difficulty finding words, or trouble focusing. Well, guess what? When your brain's not getting enough oxygen and, or you're not getting enough quality sleep, this is going to unfortunately be an expected effect. This is one of the symptoms that can be particularly troublesome for students, like when they take the SAT or the ACT that requires extended periods of sitting. And students with POTS who take those exams often find that they do really well because the first half of the exam, but by the second half of the exam, their POTS is acting up a little bit, they're getting fatigued, and they have a whole lot more difficulty solving the problems. Same thing with extended tests in a classroom or if you're in a, maybe you're in a college class that's like three hours long or something. People can, with POTS especially, can have a lot of difficulty with cognitive abilities when they've had to sit still for that long. Students and desk workers may need to periodically get up and move around at conferences as well. Try to sit towards the back of the room or the auditorium so you don't feel as self conscious when you get up. Get permission, obviously, or talk to the teacher or the presenter ahead of time. Let them know that you may have to stand up. This is not an uncommon accommodation. People with low back issues often have to do the same thing. Hopelessness and helplessness and feelings of depression. Well, when you're going along and you're healthy and active and happy and all of a sudden you, something happens and the things that you used to love doing, you just can't do anymore. You feel like your body has betrayed you. You may feel very helpless because you don't know how to stop it. Your heart rate just goes, you know, out of control for, quote, no apparent reason. And you may feel hopeless because you're reading that there is right now, no cure. So people who develop POTS often experience depression and grief. They grieve the loss of their abilities because their life has changed and they can't, you know, go hiking eight miles anymore or whatever they used to do. They grieve the, for some of them, the loss of their vision for the future. Maybe they thought they were going to be a pediatric floor nurse with pots. That's going to be a lot more difficult because pediatric floor nurses are on their feet a lot and having to lift and twist and bend and do Those sorts of things. Is it impossible? Not necessarily, but it's going to be a whole lot harder. Some people with severe POTS may not even be able to drive, which can feel extremely confining, especially for people who tend to be extroverts. And they need to be around other people to get energy and to feel connected. Health anxiety is another issue for people with pots. A lot of people with POTS report that they were just bebopping along just fine. They got some kind of virus, and their life was never the same afterwards as a result of that not having the sudden onset of pots. Now, when they start to have a different feeling or they can't seem to control a symptom, their health anxiety may go way up because it's like, oh, crap, what's going wrong now? And it makes sense. I mean, if you're doing fine, then all of a sudden you get punched in the gut. You're going to worry that you're going to be caught by surprise like that again. So it's important to help people figure out ways of dealing with their health anxiety, because increased stress. Increased anxiety usually increases the severity of POTS symptoms, which takes us to generalized anxiety, agoraphobia, and panic. Because of the dizziness, because of the fainting, because of the tachycardia. It. It can feel very scary to go out into public because people may not know when their symptoms are going to hit. And it could be something very innocuous, like they're standing up from their desk and all of a sudden they fall out or they're walking upstairs. It may not be, you know, something that could be predicted, which contributes to a lot of people not wanting to go out in public because they're afraid of being humiliated, they're afraid of getting hurt, and it makes sense. So it's important to help people gather baseline data about the frequency of their episodes, what makes it worse, what makes it better, and really develop a plan of action for resuming as normal of a life as possible. And also having an emergency plan can also be helpful. If somebody's in college and they have to walk from one building to another between classes. If they start having an episode, where can they go where they'll be safe? And what do they need to do in order to get control of the situation or in order to regulate their heart rate or make it so they don't fall because they've gotten dizzy? People with POTs have an extreme amount of guilt. Very often they feel guilty that they can't do the things they used to. They can't Maybe keep house the way they used to. Even if they live by themselves, they may be looking around, going, this place used to be spotless, and now not so much. But there's a lot of guilt because they feel frustrated. They feel angry that they. Their body at their body because they cannot do the things with the people that they love anymore. They may feel guilty because pot symptoms sometimes come on out of the blue, and they may be canceling on people a lot if their anxiety starts to go up, if they start to develop agoraphobia, they may start disconnecting from their friends and canceling even more because of their fear of having episodes in public. So guilt is something that we definitely need to deal with. Remember, guilt is anger at ourselves for something. We feel guilty when. When we feel like we've let other people down. Pessimism is not uncommon in people who have, especially in people who have difficulty controlling their. Their symptoms. They may feel like nothing is ever going to get better. So exploring those cognitions again, keeping a baseline of, you know, what are my symptoms and how frequently are they happening? What's the intensity and duration? What we want to go for is a reduction in the intensity, duration, and or frequency of the episodes. It's not going to happen overnight. But if you keep a log, then you can see progress. And if you have a flare, then you have data you can go back and look at and identify, was there something that happened that may have precipitated this stress? Well, stress itself can make POTS symptoms worse. It's important for people with POTS to identify the must dos. What things have to be done? There's a lot of stuff I want to do, but what things have to be done. Okay, of that list of things, simplify them as much as possible, especially when you're having low energy times. Okay, now you've got a simplified list of the things that must be done. Now, which ones can you delegate? Well, get rid of those. Have other people help you out. And which things can you or do you have to do yourself? Educate your family and friends about pots. A lot of people don't understand, especially since it's an invisible disability. They may not be able to tell how you're feeling. In our house, we have a scale on the refrigerator that goes from one to six. One being doing great. Three is, I'm really tired. I need to rest. Six is I'm incapacitated. I can barely stand without feeling like I'm going to pass out. And, you know, you've got the increments in between. But my Daughter is able to move the magnet to whatever level she's at that day. So as a family, we know where she is and we can accommodate that and be more sensitive, for example, if she's having a bad day, to how much noise we make, to how many times we bother her, etc. So she doesn't have to regularly tell us, you know, all of the things or have every single person in the house going, hey, how you feeling today? So, so that's helpful for us. But every family is going to have their own method. Avoid physical stress when possible. Now, we already talked about exercise can be really helpful for recovery and preventing deconditioning. But avoid unnecessary physical stress like heat or cold or, you know, if you're moving, you know, what can you do to minimize how much you have to do when you're moving? You may have to break it up. Instead of doing moving your entire apartment in two days, you may have to break it up and do, you know, an hour a day for several days. Address affective, emotional or cognitive stress. You know, there are things that are going to stress you out. Life happens. It's important to be able to have support systems to deal with that. Environmentally, we already talked about stimuli in the environment. Lights, smells, sounds. Address those as much as possible. Figuring out accommodations. We're going to get to more accommodations in just a second and relationally we're going to talk about that more in a minute too. But it's important to understand that a lot of people with POTs have challenges in in their relationships as their significant others develop an understanding of what POTS is. Relationship issues and invisible disabilities. People with invisible disabilities especially may find that their providers are very dismissive and can't be trusted to listen. I've heard from dozens of people how their doctor kept telling them it was just anxiety or they were their symptoms were dismissed because they weren't consistent enough. And that's really overwhelming for a lot of people because they know they don't feel right in their own skin and they know it's not all in their head or. But finding the right person with POTS generally. I will tell you one of the best places to get heard is from a cardiologist. Has been my experience significant others who minimize the symptoms or reject you. Some people will not adapt. Whether they have prior bad experiences with people making up illnesses or they are just that insensitive or narcissistic. There are a lot of reasons, but sometimes significant others are unable or unwilling to adapt. Other times they may think that they are motivating you by being tough. And it's important to help them understand that no amount of motivation to going to regulate your heart rate and your autonomic nervous system. Sometimes people with POTS have difficulty with their significant others understanding how they feel, and you may need to explain it to them in multiple different ways until they get it. There are alterations of activities with friends and a sense of disconnection. If you used to go go to the gym with your best friend or go hiking all the time or go kayaking or bike riding or whatever it is, you can't do those now. Even shopping can be too much for a lot of people and so they may start feeling like they are completely homebound and disconnected with the friends that they used to spend time with and the things that they used to do. It's important to find other things that you can do with those significant others so you stay connected even though it may not be in the same way. Realize that things that make people with POTS happy, like going out to a park, can also make them sad because it may highlight the POTS related limitations. They start remembering they go out to the park to walk on, you know, walk on the path and they remember when they used to go out there and run five miles. So it can be bittersweet. And it's important to just be empathetic with their situation. In terms of other accommodations, the Job accommodation network or askjan.org can be a treasure trove. Suggestions and I use this site not only for work related accommodations, but also for school as well as at home activities of daily living. You can search for example by the type of limitation. So if the person gets dizzy easy or has difficulty standing for long periods, you can look and you can find what has been identified as reasonable accommodations. Those things can be applied at home as well. So if somebody has difficulty standing for a long period, making sure that they have a seat available, like when they're cooking, if they get dizzy when reaching overhead, making sure everything is at eye level or below those things are accommodations that can be made in the workplace, but they can also be translated to home to make your home life better to the extent that you can. People with POTS may develop some of the limitations that are identified in this presentation, but seldom develop all of them. And the degree of limitation varies among individuals. Questions to consider when identifying what needs to be addressed what limitations is the person experiencing? Maybe they're having difficulty washing their hair because every time they raise their hands above their head they get dizzy. Okay, so the limitation is can't raise their hands above their head for a long period of time. How do these limitations affect their job and their performance of activities of daily living? Well, if they can't raise their hands above their head, they can't reach into high cabinets, they can't wash their hair, what else can't they do? What accommodations are available to reduce or eliminate these problems are all possible resources being used to determine possible accommodations. Once accommodations are in place, evaluate the effectiveness to determine whether additional accommodations are needed and then consider whether supervisors, teachers, significant others need training. So many times teachers and supervisors have no idea what POTS is. It's a relatively new diagnosis, so they may need to be educated about what it is, about the symptoms, and about the accommodations the person may need. It's important not to assume that they know or get offended if they don't know. Askjan.org is a website that is hosted or whatever by the federal government and it looks something like this and you can search by disability, by the limitation the person's experiencing, by the work related function or by the accommodation. So there are a lot of different ways you can search to find reasonable accommodations to improve your quality of life both at home and at school or at work. POTS is an extremely common condition and frequently misdiagnosed as anxiety. It's an invisible disability that impacts every area of life, which can lead to impaired self esteem, depression, anxiety, grief, guilt, relationship issues, and even secondary health issues. Stress from the effects of POTS and often can make people's POTS symptoms even worse. Vanderbilt University and the Mayo Clinic in Rochester, Minnesota have two very active clinical trials. You can learn more about clinical trials that are currently ongoing@clinicaltrials.gov. Find out more about pots@docsnipes.com YouTube this presentation has been produced by Executive Producer Mr. Charles Snipes Presenter Dr. Donnelly Snipes, both of whom can be contacted at 1633 West Main Street, Suite 9, 02, 11 and 10.