Dysautonomia: Navigating the Journey - Martha Willis - APP Conference 2026

Well, I think we're going to get started for the afternoon. Is everyone ready? Fall sleeping. That would be great. No, I'm kidding. And hopefully everyone from online is back again too. So my name is Martha Willis. Um, let me go to the next slide. Um, I am the nurse practitioner in our syncope clinic, which is in the division of cardiology here at Cincinnati Children's. Um, in addition to that, I work with the electrophysiology of the EP team. Um, I'm already switching things up a little bit because originally this title was called Dysautonomia syncope, um, Navigating the journey, and I changed it to traversing the symptoms. Um, because both diagnoses can be complex and overwhelming, the dysautonomia and the syncope, but the goal is to avoid this. And traverse like this, managing symptoms is a daily process for our patients. I have no disclosures. Unfortunately, I could retire early. No, I'm kidding. Um, the objectives for today, I want to identify a poorly functioning autonomic system, evaluate dysautonomia and syncope throughout the healthcare setting, and describe evidence-based practice, treatment for dysautonomia and syncope throughout the healthcare experience, so the in and outpatient side of things. We're gonna start with a case study, um. I thought we had that little QR code, but we'll try this anyway. Um, so I just wanna let you know this is a 15-year-old female. Um, she has had syncope for 2 years now when she comes to us. She's had two episodes of syncope after, or I guess I would say 2 years of symptoms because dizziness doesn't always result in syncope for these patients. Um, two episodes of syncope, one with prolonged standing while in the shower, and another one when she was showing our pig at the county fair in the summertime. She's dizzy at least once a day with position changes. She's frequently nauseated. She's recently lost a lot of weight. She has extreme color change in her extremities, more specifically in her legs. Um, she has migraines 2 to 3 times a week, and she is also suffering from extreme fatigue. So I do, if anyone has any questions, um, after obtaining vital signs and an EKG, this, oops, did I go back? So, yeah. So the question is, what is the diagnosis? If people can pull it up. And I know there's a little bit of a delay, but just to let you know, the EKG looked normal, so that's very reassuring. And that's one of our, um, big assessments in these kiddos, and then obtaining orthostatic vital signs. And I'll talk to you a little bit more about that in a minute. I want to give you all a few more seconds, it looks like people are leaning toward dyatonomia, wow. Maybe someone else can give me this lecture. No, I'm kidding. So, um, functional neurologic disorder is another great thought as well. Um, honestly, I'm glad nobody's leaning toward arrhythmia because we are essentially in the syncope clinic looking for the needle in the haystack. That's why we started in cardiology, um, very small percentage, um, less than 5%, probably 0.25% of these patients present with an arrhythmia or present and we find an arrhythmia as a result of it. Um, so I'm going to go on, if that's OK. I don't, yeah. So, um, absolutely right. The diagnosis is, um, is dysononomia. So what is that? Um, let's talk about the autonomic nervous system, because that's the dysautonomia part. I always tell my families dys means not autonomia is related to your autonomic nervous system. The ANS or autonomic nervous system, regulates body functions without conscious thought. Three divisions of the autonomic nervous system are the sympathetic, parasympathetic, and enteric systems that work together to maintain homeostasis. Dysautonomia is a disorder that disrupts that autonomic nervous system, as I said, leading to various symptoms and challenges. The ANS is responsible for regulating the subconscious homeostatic process within the body and cardiac muscles and glands and monitoring the visceral organs and blood vessels. The sympathetic side prepares the body for situations requiring strength or alertness. That's that fight part of your fight or flight nervous system, the autonomic nervous system, resulting in dry mouth, for instance, increased heart rate, digestion, slowing. Patients and families will also often notice, um, uh, pupil dilation, increased heart rate, and constipation. On the other side, the parasympathetic side. Um, this is activated during times of rest and digestion. That's the flight. It results in slowed heart rate, digestion stimulation, or yes, stimulation, peristalsis, for instance, and the families and friends of these patients will often see pupil constriction, diarrhea, slow heart rate. Things just slow down. So everybody, if you can just take a moment, stand up, stretch, the people at home and online, maybe not do this, um, because I don't wanna listen in response, um, so how do you feel? So raise your hand if you've had vision changes or you feel hot or dizzy. Not many, because we're all adults here, tends to happen more in the teenage years than any other time. Feel free to sit down whenever you're ready, but envision this, if you stood up, suddenly, the ground below you whooshes and whirls, you have physical explosions, the feeling is overwhelming. This is what people experience when they have dysautonomia, much like these women in the pictures here. But we are striving for people to feel like this when they stand up and stretch. Dysautonomia, to describe it a little further. It refers, as I said before, to the disorder of the autonomic nervous system where your body struggles to regulate without your brain knowing it. It's basically your body's autopilot. It's an umbrella term. Um, used for the dysfunction of the autonomic nervous system. It can be partial or complete malfunction, local or generalized, acute and reversal, reversible. It's primary, there's always a primary or secondary condition. So basically, it's overwhelming and very difficult to manage. What do you consider dysautonomia? This is an umbrella term under which specific diagnoses fall. Many of these diagnoses are encompassed within dysautonomia, and it's inclusive of many systems and many subspecialties. And to make matters worse, most people only see the tip of the iceberg. If you have dyodenomia, you look normal. You continue with your normal activities, but struggle mightily with each task, because what is below the tip of the iceberg is what is happening inside of your body. So, as I said before, a lot of these patients are typically teenagers. So imagine being a teenager in this social media age where you don't only compare yourself to your peers, you compare yourself to the influencers. Frankly, it's all overwhelming and very frustrating to not feel normal. So, as you know, the autonomic nervous system controls the involuntary body function, such as heart rate, blood pressure, temperature, digestion. Essentially, your autonomic nervous system, as I said before, and I'll say it again, is the body's autopilot. As we've discussed, dysautonomia's multi-system disorder, with so many possible symptoms, the amount it affects each system is very individualized. Differential diagnoses are expansive and encompasses circulatory, cardiac, neurologic, psychologic and psychiatric disorders. Um, dysautonomia is a confusing diagnosis, and many pediatric dysautonomia patients are told they are just growing, and this is a normal teenage problem. It is imperative for accurate diagnosis, however, when targeted testing is a challenge and is not often an option. Much testing is available, but unfortunately, the specificity and sensitivity. Um, in pediatrics, it's just not there for for dysaudenomia. Therefore, specific and accurate evaluation is extremely important on so many levels, from a treatment perspective to a financial perspective. So, the epidemiology, it affects about 5,000,000 to 3 million individuals in the United States. It's 4.5 to 1% female to male predominance. 10 to 12% of family history family have similar symptoms. At least 33% of the patients develop symptoms before they turn 18 years old. Um, 50% of patients are diagnosed in adolescence, so dysautonomia has been rapidly increasing in the years I've been doing this, um, and the, in the pediatric population, and there are lots of triggers that can contribute to that, and actually one of them was COVID. So, since neurocardiogenic syncope falls under the umbrella of dysaudenomia, it's important to discuss syncope. And obviously the reason for us starting the clinic in cardiology. Neurocardiogenic syncope has many of the cardiovascular dysautonomia symptoms. Syncope takes dysautonomia symptoms a step further and is a relatively sudden temporary terminating loss of consciousness due to the inadequate cerebral perfusion. Neurocardiogenic syncope begins with venous pooling. A sudden fall in the venous return to the heart, a surge of the afferent neural input that mirrors hypertension. Finally, there's a sympathetic withdrawal, and then that includes bradycardia and hypotension that results in the loss of consciousness. At times, we use the term syncope and loss of consciousness synonymously, but to be complete, syncope is just one of the possible causes of loss of consciousness and a very distressing subset of dysautonomia. All right, so the epidemiology for syncope, syncope is a common clinical problem in adolescents. 60 to 80%, um, will have neuro neurally media hypotension or neurocardiogenic syncope. Syncope is a common chief complaint in general pediatrics. Um, it represents 3% of all pediatric emergency visits, and up to 25% of children experience an episode of syncope by the age of 18. The incidence is highest, as I said before, in the teenage years, often beginning in puberty when we have the growth spurt and the hormone changes, and it's more common in females. Here, this is just a video of one of just a kind of a cool quick video to lighten it up a little bit. I don't know if I can get it to play though. How do I do that? To push this button. Space bar. If you can keep up with her. So that's just a depiction of a few of the symptoms and a few of the experiences that these people have. And if you look at her, she looks normal, but she's suffering a lot inside. The burden of disease. Regardless of the type of etiology, the burden of disease can be encompassing and indicate and includes both the patient and the system. As I stated, 3% of patients are seen in the emergency department. Many patients are referred to many specialties, which increases stress on the patients and families. On the patient and family side, there are concerns for serious medical problems, stress, anxiety, missed school and work, loss of wages, and altered activity. System burdens can be multiple office visits, unnecessary testing, and high costs incurred from the testing and the visits. While somewhat dated research here, the proof nonetheless is here. The burden of the symptoms that these patients have is quite impressive as well. Overall, quality of life for those who have syncope with dysautonomia is similar to their asthmatic, obese, end stage renal disease cohorts and much lower than healthy and diabetic patients. In another study, the disability level. Closely matched congestive heart failure and COPD in adults, while the autonomic nervous system burden correlated with these patients. A few facts to point out. Dysautonomia is not a disease. It is a general term used to describe autonomic nervous system dysfunction. Approximately 83% of patients are diagnosed with anxiety disorder before being diagnosed with dysautonomia. The average time to diagnosis of dysaudenomia is about 6 years. One purpose for evaluation is to rule out serious causes of syncope. And diagnose and comprehensively treat the patient with minimal testing. To begin the evaluation, dysautonomia requires an in-depth evaluation, which I'll review shortly. After having the syncope clinic for over 15 years and reading through all of the research and literature, Um, we've learned the most important part of diagnostic evaluation is a thorough and complete appreciate that redundance history. Any red flags must be addressed. However, further studies are not often necessary and result in low diagnostic yield. Let's now talk about a framework for the evaluation of these patients that allows for making a diagnosis, ruling out serious causes, and performing focused tests. As I stated, the most important part of the diagnostic evaluation is the complete history. Obtaining an EKG and orthostatic vital signs are part of our evaluation. EKGs are widely available and relatively inexpensive. I wrote inexpensive, but at $300 it's still expensive to many people. Um, especially if you don't have health care insurance, um. They can provide information about the potential and specific cause of syncope, such as specific heart arrhythmias. Further studies can be warranted based on red flags. Our team developed a clinical decision approach support tool. This algorithm summarizes the key points for evaluation and treatment of neurocardiogenic syncope and includes the standard workup, red flags, treatment, and referral recommendations. Let's look at the parts and take a closer look at the algorithm. Here, I broke it down just for time and space, specifically talking about the history. Um, it includes, as I said before, the comprehensive, situational, medical, and family history, the, um, also a family history, in addition to that, a thorough physical examination, and electrocardiogram, and orthostatic vital signs. Most other tests, including the tilt table test, which used to be pretty popular. Um, is unhelpful and don't add anything to the diagnosis. In fact, in cardiology, we no longer even have a tilt table test because it is not considered, um, a gold standard for pediatrics. The sensitivity and specificity just isn't there, but we still get a lot of requests for it from families because they've heard that from other people. Um, the history. So what should the comprehensive history include? You can see here the details. The history is obtained to eliminate the red flags. Red flags also assist in determining when to reassure versus refer. Explanations during the history can also help the family to understand more about what's going on with their child. Here is the next part of our algorithm. It's the red flags. I've already mentioned them a bunch of times. I'll read through some of them here. I the reason why I keep mentioning it is this. This is the major take-home point of the discussion. What are we ruling out? We need to rule out the big bad stuff. Um, the red flags, exertional syncope, syncope preceded by chest pain, physical injury from syncope, near drowning, seizure activity with a postictal state, and focal neurologic finding after the event. First-degree family history of cardiomyopathy, sudden death, channelopathy, or pacemaker defibrillator. Physical exam reveals a pathologic murmur. If it doesn't sound right, send him to the syncope clinic or cardiology. Hepatosplenomegaly allowed us to an abnormal cardiac or neurologic examination and an abnormal EKG. As you can see, the red flags are about syncope. In this situation, dizziness doesn't count. And I'm not saying that dizziness isn't important and overwhelming, and that's more for the dysaudenomia, but again, we want to rule out the critical problems, if there is any, which fortunately doesn't happen very often. In a recent study, there was 96% sensitivity in identifying pediatric cardiac etiology with a positive history of exercise-induced syncope, positive family history, abnormal physical exam, and an abnormal EKG. In fact, we must remember that 93% of patients that present to the syncope clinic at Cincinnati Children's are diagnosed with neurocardiogenic syncope or dysaudenomia. So, as I said before, as I practice, I think about the needle in the haystack, and we truly are looking for that needle in the haystack, but we need to treat the dizzy symptoms and the syncope as well, even if it isn't a detrimental cardiac issue. Utilizing syncope dizziness algorithm and, and obtaining a detailed history, we're able to focus our testing. In a study from 2024, the syncope program found a higher percentage of abnormal test results when ordering testing with focused history. Despite this, and fortunately, because iron levels are relatively treated are easily treatable if they can take the medication, we found low iron levels to be the highest percentage of things that we need to treat. Other more devastating diagnostic tests results and occurred in only 1 to 2% of the time in the total population. For the diagnosis of neurocardiogenic pre-syncope or syncope, obtain a manual heart rate and blood pressure after 3 minutes of lying, then after 3 minutes of standing. If there's an increase in heart rate of more than 40 beats per minute in adolescents and children, a fall in blood pressure of more than 20 millimeters of mercury, which isn't something we often see, but something we look for, or greater than 20 beats per minute increase in heart rate with symptoms, then the diagnosis of neurocardiogenic syncope is supported. Of course, that adds comes from also having a good history. For postural orthostatic tachycardia syndrome, which is a form of dysaudenomia, um, patients must have an increased heart rate of greater than 40 beats per minute. Um, in children and adolescents within 10 minutes of standing. Um, assuming an upright posture and in the absence of. orthostatic hypotension. Further, the higher threshold in children and adolescents should be used since they have a greater physiologic orthostatic tachycardia. Morning postural assessments will optimize diagnostic sensitivity for pots. However, hemodynamic criteria in isolation is not sufficient for a diagnosis of POTS. POTS is defined as a common form of autonomic dysregulation, inclusive of the presence of chronic symptoms of orthostatic intolerance for more than 6 months. POTS lasts over time and has reproducibility. The guidelines remind us that orthostatic tachycardia must occur in the absence of other overt auto-regulation or other chronic debilitating disorders, um, that may cause tachycardia. So I think of acute blood loss, I think of pain, I think of anemia, systemic infections, inflammatory conditions, hypothyroidism. Both cardiac symptoms, palpitations, lightheadedness, dyspnea, chest discomfort, for instance, and neurologic symptoms, headache, tremulousness, sleep difficulties, mental clouding are often present with POTS. While pre-syncope and lightheadedness are universal. In POTS patients, only a minority of patients experience frank syncope. As many disease entities can be confused with POTS, it becomes crucial to identify what the syndrome, what the syndrome is. What appears to be POTS may be an underlying condition that requires specific therapy. Therefore, diagnosing POTS is very difficult and almost impossible to do. Um, and should not be an immediate diagnosis. So if somebody shows up to your office for the first time in primary care, for instance, and, and has felt dizzy for, you know, 1 week and was sick, um, 2 weeks before that, um, it's not considered pots at that point in time based on the criteria. Oh, I forgot about that arrow, that's exciting. Um, all right, so on the outpatient side, up to 60% of children who have one syncopal event, um, will have at least one additional, additional episode. The evaluation often begins in the outpatient setting with the first dizziness and or syncopal event presenting to the primary care office or the emergency department. At Cincinnati Children's, the children usually. Um, adolescents can also be seen in the teen clinic or other specialty clinics, and it's often just a casual comment. I'm dizzy all the time, or my vision goes black when I stand up too quickly or I really take those hot showers or when I skip breakfast. With the initial encounter, there is rarely a need to diagnose POTS or dysautonomia. Focus on the neurocardiogenic pre-syncope or syncope, assess the child, gather a complete history of the syncopal events, maybe obtain an EKG and get orthostatic vital signs. Treat the urgent issues. Educate and initially treat an early, as I said before, or hasty POTS or dysautonomia diagnosis often leads to patients and their family going down that rabbit hole and possibly conflicting diagnoses if something else is triggering this, which can confuse and frustrate the patients and families. When a syncope and or dysautonomia patient is an inpatient, they are often admitted for comorbid conditions or for concerning symptoms. Monitoring will be continued. And crucial symptomatic treatment is addressed. If the inpatient team feels the symptom is compromised or discharge is unsafe due to a concerning system, a focused consult should be obtained. Once significant concerns have been addressed, reassurance and education are provided. Primary care and focused follow-up is scheduled prior to discharge. So, whether a child is seen in the outpatient or inpatient setting, the initial treatment includes aggressive hydration. The research shows, says that 80 to 100 ounces of water, um, daily is what you need to increase that blood volume. However, I ask my patients to drink 100 to 120 ounces of water a day. If they fall short of that, then they come within that criteria, and then we're really fortunate. I have not found if they drink more than 125 ounces a day, that their symptoms significantly improve from 100 ounces a day. Um, if they weigh below 100 less than 100 pounds, I will recommend 1 ounce per pound. Um, to drink per day, caffeine is eliminated. Sorry, Mark, I know you're talking about your Diet Coke there, so yeah, no caffeine, um, and because it's considered because it is a diuretic, I will not also jump on my soapbox, um, but merely say that energy drinks should be prohibited, and of course, in my EP world, I would say definitely not energy drinks at all. Um, patients can also, should also increase their dietary sodium. The literature recommends 3 to 5 g of dietary sodium daily. We've come to the conclusion with the American diet. Oh, and chips too. Thank you, Mark. Yeah, it's like a. Vanna here. I should change your name. Uh, but we recommend, um, two healthy, healthy-ish, salty snacks a day. We really like pickles, um, because the nutritionists I work with say pickles used to be cucumbers, so they're healthy-ish for you. I also tend to focus on things that are baked and not fried. Again, because I'm still working in cardiology and I want them to be heart healthy. So things like pretzels, cheeses, goldfish crackers. Goldfish crackers are really popular in the little, in the younger kids too. Um, nuts are a great source too, good source of protein, good source of sodium, but I worry about, um, nut allergies in the school system. Um, what else can I tell you about this? This a school note should be provided and to encourage kids to always have that water bottle with them to hydrate throughout the day, but more importantly, bathroom breaks and passes as needed. That seems to be the most restrictive and that prohibits them from drinking. enough water. In addition to that, um, it's important to have 30 minutes 5 days a week of cardiovascular exercise. Swimming, recumbent bike, or rowing are helpful, um, because they're sitting and not standing in case they get dizzy. And if they are deconditioned, progressively start slowly and progressively increase the exercise over time. And if they are athletes, they should continue with their athletic, um. Endeavors and stay on the sports teams. If they're really dizzy all the time, we do recommend core floor exercises to begin to build up that core and um increase resistance so they can get back to exercise. Um, the interesting thing is exercise has, has been proven actually to be more effective than beta blockers in these patients. Um, it also improves sleep, um, instead of causing fatigue, and the dizziness tends to cause a lot of fatigue, so a lot of these patients are very tired as well. Um, behavioral changes are important as well. Changing position slowly, being aware of the heat, especially in the shower or outside in the summertime, the heat that leads to vasodilation and dehydration. Reposition if they have to stand for a while. Avoid beverages that may result in dehydration or certain recreations, vaping, THC, um, that can decrease the blood pressure and cause dizziness. Be aware of physical and emotional stress that can trigger neurocardiogenic syncope. Biofeedback and cognitive behavioral therapy is very helpful in these patients because it can change your intrathoracic pressure and help to push more blood to your head so you don't become dizzy. So, what are the culprits? There are culprit triggers. The ones that we see most often are changing position, prolonged standing, being in the heat. Um, also, people can be sick, that they would increase their chance for passing out. Like I said before, there was a big uptick in COVID. In the beginning of COVID, it didn't happen until about 6 months after, but then as the COVID virus sort of changed a little bit, it was more mimicking the current viruses that, that we have. Um, I've also recently seen people complain of feeling dizzy when they got to the top of the stairs, so that can be another trigger as well. Um, and then I did have once 3 patients that were all in the same biology classroom, smelled bad, noxious stimuli, and they were all passing out in that biology classroom, and different periods too. So Culprit medications, as you probably are well aware, polypharmacy leads to a lot of dizziness and the increased chance for syncope because most medications, one of the side effects is dizziness, but things like diuretics, opioids, tricyclic antidepressants, even beta blockers, which sometimes we. Use in patients to help with their dizziness and tendency to pass out can increase dizziness. They all affect the dysregulation of the autonomic nervous system and worsen orthostatic intolerance. And it seems like every time that I look up another medication, dizziness is one of the side effects. So, um, of course, yeah, I want to make sure we're on the right side. OK. So, of course, there are times that these patients, um, benefit from a healthcare team approach for treatment. Um, this is a continuation of our algorithm, when to refer. This is a general rule for referral. Refer to cardiology of syncope when younger than 8 years of age, syncope during exercise, syncope preceded by chest pain, physical injury from syncope, not always something terrible, but something concerning enough that they fell and they hurt themselves. And then family history of sudden death, cardiomyopathy, channelopathy, um, an abnormal exam or near drowning. I refer, I would recommend referral to neurology if there was seizure activity, but the important point of this is a postictal state. So we do have convulsive syncope. Kids will fall to the ground, they'll start shaking, looks like seizures. Paramedics have said it was a seizure, but not a seizure. Well, it's convulsions as a relate as a related to the syncope or as a result of the syncope. So it's the postictal state that's really important to focus on. And then a focal focal neurologic finding after the event. Um, referrals often warranted for the challenging patients too. Those who do not respond to initial treatment of aggressive hydration, increased sodium intake, and daily exercise, or they don't improve over time. So, after talking about all of this, now you all are the experts, so you've done most of my work. Thank you very much in advance, um, except I still need to see patients in clinic because that's my job. No, I'm kidding. Um, but thank you. So the patients and families are prepared to explore dysautonomia and or frequent syncope. They've been drinking the water, as I said before. They've also eliminated caffeine. They eat a regular diet throughout the day, so their blood sugar isn't dropping, and they don't, their body doesn't have to work harder at making more blood sugar. They've been doing cardiovascular exercise. They've been doing all of this. For about 2 months, but they're not getting better. What else should they do? Let's just dig in a little bit deeper. These would be the reasons for referrals to the syncope clinic. It includes further support for the family. The fam the patients may need validation. This isn't their heart, and it isn't their brain. If your gut questions you and you're like, I don't know, this just doesn't seem right, refer. Um, the reality is, is the big bad wolf could be lurking behind the scenes. So if it doesn't feel right, send him to the syncope clinic. A few clicks. OK. So, these are some examples just to let you know and to make you be aware of the further focused studies. The echocardiogram. The echocardiogram assesses the structure and function of the heart to make sure that those coronary arteries are nice and patent. They don't have cardiomyopathy. They don't have any holes in their heart. The exercise stress test evaluates the heart rate and rhythm. So it looks for, it evaluates for cardiac dysrhythmias. Um, it shows if there's going to be a vasodepressor response, which, which is a result, which results in syncope. Um, there's also persistent post-exercise sinus tachycardia, and it also shows the condition status of the patient. The event monitor and implantable loop recorder that also looks at the variability of the heart rate and rhythm over time. Um, our methods can be explained in a standard clinical decision support tool, which I showed you the parts of the algorithm before. 41.7% of the patients that are diagnosed with neurocardiogenic syncope are diagnosed after a comprehensive, um, history and physical and orthostatic vital signs. So if you only did those two things, you would get almost half, well, maybe less than half. So 40%, but 54.8% of the patients will be diagnosed of these all of these patients will be diagnosed with neurocardiogenic CP after a graded exercise test. So, for a whopping total of 96.5%, an added benefit of the exercise stress test is finding any kind of, as I said before, cardiac arrhythmias. So, sometimes treatment needs to cover the gamut. Moving beyond initial treatment is occasionally necessary. So, tilt training, such as crossing your legs and bending over when you feel dizzy, um, certainly sitting down or sitting down, lifting your legs up in the air. Um, elevating the head of the bed, that's tilt training. It trains your heart to beat a little bit harder to push a little more blood to your head when you're sleeping. The recommendation is about 15 to 20 degrees of head, head of the bed elevated at night. Full length support stockings. The studies recommend 30 to 40 millimeters of mercury. We like to recommend sort of, um, core compression, so from the belly button to the upper legs, so kind of like biker short compression. A lot of these patients, um, have skin sensitivity, so they can't wear the full length stockings, and we found that core compression or working on your core helps to push more blood to your head. Um, a diet high in protein and sodium. So I talked about nuts, but a diet high in protein, what happens is when you go longer between meals, a lot of these kiddos skip breakfast because they're not hungry and feel nauseated in the morning. They oftentimes nowadays will be skipping. Lunch because they say the school lunch is nasty, and I've heard that for about the last year and a half. So going all day without eating, the blood sugar drops. Your body's doing what it needs to do. It's making that blood sugar, but it's not, not more focused on making the blood sugar than pushing more blood to your head. So, it detracts from it and causes increased dizziness. So a diet high in protein, the protein stabilizes the blood sugar for longer. A diet high in sodium, the sodium binds with the water to increase your blood volume. So, um, eliminating caffeinated beverages, we already talked about that, I'm not going to, you know. I don't want to say beat a dead horse, and I don't even know if people know about standing on a soapbox anymore. A lot of my teenagers are like, what's a soapbox? Um, sleep is another one. So people who are dizzy. Become very fatigued. People who don't sleep become very dizzy. So the recommendation, according to a relatively recent study, was 8.5 hours of sleep at night for teens. The study said they don't get tired until about 10:30 or 11, and then we wake them up too early for school. So a lot of times that 8.5 hours is out the window, not even adding to the phone that they're scrolling through until all hours of the night. Um, so fatigue can make your symptoms worse. Um, there are comorbid conditions that add to dysautonomia patient picture and can exacerbate their symptoms. We observed a small group of our patients and found that headaches or migraines and anxiety were most often associated with dysautonomia. We later gave our patients a GAD-7 anxiety screening tool, which it was helpful to know when Kathy was talking this morning about that, that. It just makes people more aware of mental health and how important it is and how much it is related and intertwined with physical health. Um, but we did get 7 score and found that 32% of our patients met probable anxiety criteria, which led to a psychology referral for further evaluation and treatment, which will help their dysautonomia and their syncope. Oh, another arrow, I forgot about that too. Um, so, before or after, yin or yang, our collaborating colleagues are all up here. Um, if if the dysautonomy or syncope patient is seen in a subspecialty clinic, first, the treatment begins with outpatient recommendations. If they fail at first line non-pharmacologic treatment, then referral to the syncope clinic. If treating dysaudenomia or syncope in the syncope clinic program becomes a challenge, and you've referred to cardiology and you've referred to neurology, then further in-depth, um, examination of things, as I've kind of talked about all along the way, would be important to look at. Looking at the fatigue, um, symptoms can be worse around, um, menstruation. So two days before. And a couple of days in the period. So are the periods, are the hormones, do they need to be controlled? Somebody just had a growth spurt. The symptoms are worse around then, um, chronic illnesses or getting sick, when you get sick with a cold, strep throat, stomach virus, symptoms are worse during that time as well. Um, getting a concussion, concussion and injury. So even in orthopedics, symptoms of dizziness and dysautonomia will be worse during those times. So treating the underlying symptoms, treating the symptoms from a dysautonomia and syncope side, but also treating the other symptom, uh, the other issues that are going along with the patient. As I said, migraines are at the top of the list as well, but you can see everything that's going on here. I didn't even mention hypermobility spectrum disorder or EDS, but that's huge with the connective tissue disorder because there's connective tissue wrapped around the blood vessels as well. So, the ability for your, um, blood vessels in your extremities to, um, constrict is more challenged when you have connective tissue disorder and it can't push enough blood to your head. Chronic fatigue syndrome, we talked about that too. So practicing good sleep hygiene. Um, this specific treatment is highly individualized from patient to patient. So looking at these other issues that may be contributing to it is very important and working with the patients to come up with a plan because this is a lifelong adjustment. Um, if it isn't lifelong, it's at least till they get through the teenage period, um, because typically when they hit their 20s, um, the symptoms tend to get better at that point in time if they don't have other comorbidities. So, through the research to develop a guideline for management and while working to understand the details of specific dysautonomia patient and trying to refer to the appropriate subspecialties if needed, medications may need to be used to augment the the the non-pharmacologic therapy of the aggressive hydration, um. There, it has been proven though, or it has been shown that medication is only somewhat helpful. As you can see here and as you know from doing research, reading the literature, um, treatment with medication is only a class 2A and a Class 2B. Um, oh, I could use my pointer. Um, class 2A and 2B, if I could get it up there, um, here, treatment, whereas up at the top, education and diagnosis and reassurance is the most important. Increased salt intake, increased fluid intake. Um, we typically start with flutocortisone. It's 0.02 mg every morning. Reason being is it's once a day. Um, it acts at the kidney level to hold on to the sodium and the fluid to increase the blood volume. Um, the other medication that we also will use sometimes is the midodrine, but that can, the recommendation is 10 mg 3 times a day. So think about it if you're a teenager, having to leave class and having to take that medication when you're in school and then having to remember to take it 3 times a day with all of your after school activities and participation and everything, and getting up late for school and missing breakfast. Um, and sometimes I won't use 10 mg, sometimes I may use 5, but the research says 10 mg 3 times a day. So that's the midodrine, um, midodrine tends to work better in patients that have EDS. So our approach, we do want to make sure that we talk to the families, um, maybe I would say that lower expectations, but tell them we'll give it a two month trial and we'll see how it goes, um, and if it doesn't work, then we have some other options too and then we also address, as I said before, the other, um, issues that may, the other triggers that may be contributing to it. More recently, in December 2025, a study was completed, a systematic review study was completed and found that a proportion of patients with sys with symptomatic benefit and improvement with aggressive hydration, and they also include some patients that took medication as well, it ranged from 67 to 100%. Um, symptomatic improvement in pediatrics, um, abidine is now being looked at, but it's not being used very often, um, in children at this point and pediatrics because again it was tested in. Um, it was approved by the FDA in the adult world, and prior authorization is a bit of a challenge, and we have to try lots of other medications before we get to this point, but I just wanted to put this up here to let everybody stay tuned. Um, maybe there's more relief coming and more options of medications if we need to get to that point. Um, remember that POTS is a type of dysaudenomia. This paper concluded that dysautonomia symptoms can be effectively managed with various medications, but I've concluded by looking at all of these medications that we are not very good at choosing specific medications to manage highly individualized patients. The treatment actually goes back to the individual. It's dependent on what's going on with them and the degree and type of their symptoms. Oh, we made it. That's good news. Um, so I have a few more case studies. I want you to look at this. This is a 15-year-old male. He's been symptomatic for 4 months. He's had 3 episodes of syncope, once after eating breakfast and standing up to get ready for school, once after a hot shower, and once after a flash photo. He feels dizzy and lightheaded. He loses his vision. This also happens almost every Monday morning before school. He's otherwise healthy. See if I can, oh. Did I go fast? OK, so the question is, what's the diagnosis for this kiddo? As you're voting, I could go back and read some of it, um. It was interesting to me as I think through this, uh, maybe I'll give you some hints and whatnot, but, um, for me, the, and maybe some of my other colleagues will think about this too, the flash photo was interesting that he passed out with a flash photo. So that gives some people some hints. I don't know if you can change your answer. Um. What else? It happened every Monday morning too, that he would lose his vision and feel really dizzy. I probably should give more numbers, right, because we just have 26 people. Yeah, OK. Um, what else can I tell you? So we did start by recommending that this patient get aggressive hydration. Um, we realized and found that school was a stressor, so he was feeling like he had distress. Oh, did it finish? And I can go back. Uh oh, I was trying to talk during the thing, so what one, do you know? Oh perfect dysatonomia. OK, well, actually, um, great thought. Um, however, this patient was diagnosed with idiopathic generalized epilepsy. Um, most of this kiddo's, um, seizures or events happened, um, on Monday morning, so he was sleep deprived throughout the weekend we found out and, um. And he was stressed because he was worried about school and wanted to do well at school, so obviously sleep deprivation, stress can trigger, um, seizures, but it can also trigger dysautonomia as you, as you all, um, astutely guessed or or thought about, um, so it is very tricky and. You just have to kind of keep getting at that history and getting at that um physical examination. This kiddo, in addition to aggressive hydration, was on Keppra. It was changed to Valproate. Um, he was given Ativan on Sunday nights for stressful situations and Diastat as needed. He was sent to psychology for assessing any psychosocial behaviors. Obviously, no driving for 3 months until he was seizure-free, and then he needed to avoid sleep deprivation and avoid alcohol or illegal drug use. Uh, do I have? Do we have time for one more? We still have time, right? Oh, we have 5 minutes. Um, and then questions, right? We'll have questions. OK for that, is that right? OK. Um, so this is the 3rd case study. This is an 11-year-old female. Um, actually, I have one more after that too, but she's been symptomatic for 3 years. She's had 4 episodes of syncope, 2 occurred while she's swimming, 1 occurred while she was running to a fire, and 1 happened when she was in the theater. She was acting, and they actually were pulling her up so she could fly when she passed out. She's an otherwise healthy girl. Um, kind of young though. Before the episodes, her teeth feel numb. Um, her brain, she described, she's, keep in mind she's 11 year old, her brain felt shaky, um, and then she has a loss of vision before she passes out. So here's the, OK, I have to keep an eye on this so I don't miss it, um, what's the diagnosis? So I keep saying the 3, the 4 main diagnoses, these are the things that come to the forefront of my mind. There are other things that are added into that. I do ask about sleep, um, regularity of periods, um, regularity of eating, especially skipping breakfast, sort of the typical teenage practices. Kind of all over the board, yeah. Um, again, it's hard and it's vague, but I will tell you a little more information. So, um, when she was swimming, the one time she was swimming, um, she actually sank to the bottom of the pool and had to be pulled out and get CPR. Um, also, when you are running and exercising, there is a catecholamine release in your body. And, um, she actually had an arrhythmia. So she did have a normal echocardiogram. She had a normal EKG, but when we did an exercise stress test, because this is kind of a weird story. Um, we, it showed that she had ventricular ectomy with PVCs, and then she went into bitemony. Then during the early stages of exercise, she, um, developed polymorphic ventricular, um, tachycardia, which was stimulated by the catecholamine release. Her running scared to the fire. It was a neighbor's fire, like a house fire and whatnot, but she and her brother wanted to see it. I mean, she didn't run into the fire, so. Um, but she was successfully treated with flecainide and nadolol, and she was referred to a genetic counselor because it can be, um, run in families as well. Um, and this is my needle in the haystack, and this is why we do what we do. Um, 4th case study, and then I probably have to open it to questions, but this is an 18 year old female, so she's been, um, symptomatic for 1.5 years. Recently increased in frequency. She has, um, 3 she's had 3 episodes of, um, syncope twice while she was working at Walmart, lifting, lifting boxes, so changing position a lot, as I said before, that's a trigger, um, and a hot truck, so in the heat. Um, and then twice, I say 3 episodes of syncope, but there were 2 back to back episodes that she had while she was eating Easter dinner with family. Um, when she passed out, they picked her up and put her in the chair, and she was, um, passed out in the chair unresponsive for 15 minutes. She has multiple spells, um, during the day when she's sitting down, um, where she just kind of goes out, and then she's dizzy at random every other day. Um, she does have a history of migraines, anxiety, and depression. So, here we go. There's only one diagnosis left. Just kidding. I know you all know the answer to the question, so. Hopefully people online are still here and answering the questions, too. Oh, it's increasing. I do like purple, it's a good color. All right, we're gonna go cause we're almost done here. Let's see if my, oh, it didn't pop up. Gosh darn it. So yeah, um, the diagnosis is functional neurologic disorder. Um, this patient, the best treatment for her, we still said aggressive hydration and exercise, but, um, cognitive behavioral therapy and senior psychologists. We have two psychologists that work with us, um, do a lot of functional neurologic disorder treatment, somatic conditions. Doctor Nicole Zacca, probably a lot of people know her, she's been around for a while, and Doctor Kimberly Barnett. Um, they both work with us and we refer our patients to them. Um, they're a great asset to our team. They also do a lot of sports psychology for us as well, um, so they're getting into that realm is also, um, so here are my references if you want the QR code. I was, I do have to say I was kind of excited because you could pick hearts when you made your QR code. So, um, those are the references for you. Um, I do appreciate your time and attention and your participation. Thank you very much. And also I have to say thank you for partnering, partnering and caring for the future of our children and working with us in the syncope clinic as well. We have a question on the line. Jessica would like to know if she, if you have any patient advice. Wait, can you move a little closer to the mic, please? Thanks. Um, uh, someone wants to know if you have any advice for a patient who would like to be a blood donor. Uh, she's curious about the loss of volume impacting symptoms. Uh, so we are always told that we're supposed to drink lots of water before we donate blood. Um, for that patient, yeah, definitely, um, I would aggressively hydrate, um, have salty snacks, certainly like 2 or 3 days before. If it's, if it's a patient that you're treating for neurocardiogenic syncope, they should be drinking like 100 to 120 ounces every day. I assume that she's older because she can't donate until you get older, an older teenage patient. Aggressive hydration. Most important, salty snacks, making sure she's eating regularly, probably at least a week before, but she should be doing that every day already. And then just let them know when she goes to donate blood that um she needs to lie down during that time because we do have patients that will pass out, um, even if it's like a traumatic event, even with the IV stick, then they'll pass out from that too, so. She can try. It is a lower blood volume, but again, keeping up with the aggressive hydration and drinking the water. It's a good question, and thank them for donating blood too, we need that. We're good. Think so? All right, thanks so much. Oh, I forgot to tell you, Kyle. Um, all right. So there is also a great app for everybody here and everybody online too, especially if you're not, well, at Cincinnati Children's and not at Cincinnati Children's, but Cincinnati Children's has a PCP support tool. App and all you have to do is search CCHMC PCP support tools and what that is is that has lots of different diagnoses and we'll kind of walk you through any questions you may have. So for instance from cardiology we have hyperlipidemia, um, syncope, and hypertension. So if you get that app, I, I believe it's free because I was able to pull it up at a conference, um, that's a great app and has a lot of information on it, especially for primary care. Thank you.