627- Revealing the ADHD-Dysautonomia Link: Why POTS, MCAS, EDS, and Hypermobility Show Up So Often

0:00Amanda Miller: This episode is brought to you by Progressive Insurance. Do you ever find yourself playing the budgeting game? Well, with the Name Your Price tool from Progressive, you can find options that fit your budget and potentially lower your bills. Try it at Progressive.com. Progressive Casualty Insurance Company and Affiliates. Price and coverage match limited by state law. Not available in all states.

0:26Welcome to the Attention Deficit Disorder Expert Podcast Series. by Attitude Magazine.

0:36Everyone, I'm Carol Fleck, and on behalf of the Attitude team, I'm delighted to welcome you to our second presentation of ADHD Awareness Month. It's called Revealing the ADHD Dysautonomia Link, Why POTS, Mass Cell Activation Syndrome, Erlos-Danlos Syndrome, and Joint Hypermobility Show Up So Often. Leading today's presentation is Dr. Amanda Miller. Dr. Miller is a neuroscientist whose research focuses on the neural mechanisms of POTS, hypermobile ERLO or EDS, mast cell activation syndrome or MCAS, blood flow regulation, and cognitive dysfunction. She is a professor at Lebanon Valley College where she teaches neuroscience and research courses to physical therapy doctoral candidates.

1:29Today, Dr. Miller will explain how the autonomic nervous system regulates blood flow, cognition, and other core functions, and she'll tell us what happens when our nervous system malfunctions. You'll learn how POTS, MCAS, EDS, and joint hypermobility can overlap with ADHD. She'll also cover different treatment options, including medications, lifestyle changes, and therapies. If you believe in the work we're doing here at Attitude to inform, empower, and support the ADHD community, please consider subscribing to Attitude Magazine. With your support, we can continue to provide trusted resources and information to help you and your family.

2:14Visit AttitudeMag.com slash subscribe or click the subscribe now tab on your screen and receive 15 % off and a free ebook. So without further ado, I'm so delighted to introduce Dr. Amanda Miller. Thank you for joining us today. Hi, thank you, Carol. Okay, so I just wanted to mention some disclosures. As Carol mentioned, I'm a professor at Lebanon Valley College, and also I consult for the nonprofit Dysautonomia International, as well as Lumia Health, which is a biotech company. It's making a wearable device that measures blood flow to the head. So the outline for today is that I'm going to look, we're going to talk about background on dysautonomia and related conditions that were mentioned like mast cell activation disorder, hypermobile Ehlers-Danlos syndrome, gastroparesis.

3:06We're also going to look at the features that connect these disorders and connect them to ADHD. And then at the end, I'm going to go over the basis of diagnosis and treatment. And if you're new to these disorders or you're trying to figure out what you may have and where to go from here, I'll go over some of the basics on how to get help. I want to mention that before I go into the autonomic nervous system, that is one of my favorite topics, that I've been doing research on POTS for about 14 years. I started in this field in 2011, shortly after I was diagnosed with POTS and hypermobile EDS myself.

3:45And one of the reasons I love doing these webinars with patients is that most medical providers really don't know how to manage these disorders. And if you want to get effective help, you need to become the expert. You need to be able to manage your own care, to advocate for yourself, and really become the expert. And then once you do, and you find help, and you start to figure out what works for you and get better, we need you to stick around and educate other patients. and then also help find more answers because a lot of these questions that you're asking, we don't actually have the answers to.

4:21And that's why I find this field so interesting. Okay, so I'm going to start with the autonomic nervous system, which controls everything that we don't think about. So this is non-conscious control, unlike cognition that we talk about a lot for ADHD. So this chart shows a lot of the functions of the autonomic nervous system in pictures It really controls all your important body functions that you don't have to think about, like your heart rate, your breathing, your digestion, glucose regulation, pupillary dilation, sweating, saliva production, urination, sexual function, and your blood vessel dilation and constriction.

5:03There are two branches of the autonomic nervous system, the sympathetic, also known as the fight or flight nervous system. You may have heard that term. And then there's the parasympathetic nervous system, which is more of the rest and digest part. So dysautonomia is an umbrella term. It's basically dysfunction of the autonomic nervous system. And this leads to chronic symptoms. The most common type of dysautonomia is actually diabetic autonomic neuropathy because type 2 diabetes especially is very common. um pots is the next most common form of dysautonomia it affects about one percent of the population it's definitely not rare so one percent of the population is quite a large number of people the problem is it isn't super common and it also um well there's a few problems with lack of awareness it doesn't um it doesn't kill people that's one and it also affects mainly young women, which is hard to get advocacy for.

6:10Long COVID actually brought a lot of awareness to this space because about 60 to 80 % of people who developed long COVID, which is symptoms lasting three months post-infection, went on to develop some type of dysautonomia. We don't know how long that will stick around, though, if it's just a temporary thing. I want to go over some of the different types of dysautonomia and what kind of populations develop these. So I kind of have it throughout the lifespan from top to bottom. If you're hypermobile or hypermobile EDS and also POTS, that tends to have an earlier onset than people who aren't hypermobile.

6:50POTS and ME-CFS tend to show up in the teenage years. And then other factors that can lead to autonomic dysfunction like long COVID can really happen at any age, but the average age of onset was about 35. Autoimmune diseases, spinal cord injuries, which can also happen at any age. Then we have diabetes, which can cause neuropathy of the autonomic nerves, so nerve death, leading to dysautonomia, also obesity and hypertension. And then there's some types of dysautonomia that occur in older populations. There's orthostatic, neurogenic orthostatic hypotension that can show up in Parkinson's disease, multiple system atrophy, and pure autonomic failure, which is pretty rare, but the Parkinson's disease is pretty common, and autonomic dysfunction is a big part of that.

7:40Okay, we're going to focus primarily on POTS, since that's what has the connection to ADHD, and also probably one of the most common and debilitating forms of dysautonomia. So POTS stands for postural orthostatic tachycardia syndrome. Some people take out the O when they say this. They just say postural tachycardia syndrome. It's the same thing. I've also seen people add the word syndrome onto POTS, which is a little redundant because the S already stands for syndrome. But however you say it, people really think the heart rate is the most important, and that's what we have in the criteria. So the heart rate is really the only biomarker we have in POTS, but it doesn't represent the full clinical picture.

8:21That's not usually what people complain about. There are different cutoffs for the heart rate depending on age. So for people under 19 from age 13 to 19, you have to have an increase in heart rate at least 40 beats per minute from going from lying down to standing up. For adults, it only has to be 30. There also can't be orthostatic hypotension, which is a significant drop in blood pressure when people stand up. And this is a common misconception. A lot of people think that to have POTS, you have to faint or you have to have the drop in blood pressure. And actually, if you have that, you don't meet the criteria for POS.

8:57You would have orthostatic hypotension. And then another big factor to it is not just the tachycardia, but you have to have chronic orthostatic symptoms for at least three months. It used to be six months. They've now changed it to three months in the past couple of years. And that means that you have daily symptoms that affect quality of life that get worse when you stand up and improve when you lay down. Okay. There are lots of mechanisms proposed for why POTS occurs. Some common ones are decreased blood flow to the heart and the brain when you stand up. The blood vessels sometimes don't constrict well enough to pump blood back up to the rest of the body.

9:42A lot of people with POTS are hypovolemic or have decreased blood volume, which is why fluid intake is so important. sometimes the muscles in the leg and the abdomen can't pump blood as well to keep it back in the center in the heart and the brain where it's needed sometimes physical deconditioning can be a factor and I'm not blaming anyone for this but often when you're chronically ill you don't get enough physical activity and that can actually make pot symptoms much worse there are also autoimmune factors that can cause dysfunction of the autonomic nerve system so the nerves that control all these functions can get damaged by autoimmune diseases this called small fiber neuropathy and then there's also evidence of decreased kidney function basically so that the the hormones that regulate blood volume and blood pressure don't respond appropriately.

10:41This episode is sponsored by BetterHelp. The holiday season is bursting with unwritten rules. Who does the work of hosting? Who travels where? And how often? When are we all expected to gather? And for how long? Some of these traditions bring joy and family togetherness, for sure. Others bring more stress and anxiety than anything else. and those are the ones worth examining. After talking it through in therapy, I rewrote one such holiday rule. I was happy to contribute to Thanksgiving dinner at someone else's house or make a reservation at a local restaurant that I would not be hosting anymore.

11:23And everyone in the family agrees the holiday is much more enjoyable now. If you're looking to make holiday change. Please know that BetterHelp therapists are licensed, experienced professionals, such as psychologists, marriage and family therapists, social workers, and counselors. They have at least three years and 1 ,000 hours of hands-on experience and have the required education, training exams, and practice. BetterHelp is now in network with more than 125 health plans, with many co-pays as low as$15 for eligible members. And if you don't have eligible insurance or you live outside the U.S., you can still get 20 % off your first month.

12:10Sign up and get 20 % off at betterhelp.com slash attitude. That's betterhelp.com slash attitude. Okay. so one thing i want to go over is that blood flow shifts when people go from laying down to standing up and this happens in healthy people as well um but in people with pots there tends to be more pooling in the gut vascular which people which i think is underrated um so there's extensive vascular beds in the stomach that blood can pull in as well as the legs so everyone is fighting gravity. Humans, you know, are bipedal animals. We stand upright, but we have to keep pumping blood to our heart and our brain where we need it to keep circulation going.

13:00So people with pots often have this problem fighting gravity. They're unable to keep pumping blood back up to their heart and the brain. This is called venous return. And keeping blood centered in the body is very important for lots of functionings. And one of those is cerebral blood flow and getting blood flow to the brain. So you need blood flow to the brain to deliver oxygen, glucose, any type of nutrients, energy to the brain, which is important to think and do all those things. The brain is the most metabolic organ. Some studies have shown that people with POTS, when you tilt them up on a tilt table, which is similar to standing, their blood flow to the brain drops twice as much as it does in healthy people, which is a problem because the brain is really good at maintaining its blood flow.

13:56Even if blood pressure is dropping, if someone is hemorrhaging, bleeding out, the blood flow to the brain should be preserved. So there's actually this problem in how blood flow is regulated in the body in POTS. Okay. There are also these other POTS-like syndromes. There's a lot of people with POTS who don't meet the tachycardia criteria, and they're given other names, and there's really no consensus on what name we should use. Everyone kind of calls it something different. The Canadian Cardiovascular Society came up with this term TSWT, which is postural orthostatic symptoms without tachycardia.

14:34Some people actually call it POTS without the T. Cardiologists like to call it orthostatic intolerance, while neurologists prefer to call it dysautonomia or non-POTS dysautonomia. I have orthostatic intolerance twice, not sure why. Some people like the term ME-CFS. Other people don't like that term. And then there's also this debate on whether we subdivide POTS into hyperadrenergic POTS versus neuropathic. I would say the POTS field has kind of moved away from this terminology. When I started over a decade ago, we were splitting hairs here and now we're thinking basically all POTS is hyperadrenergic, whether you define that as the increase in adrenaline or the tachycardia increase.

15:20It's kind of all sympathetic driven. There are some people with POTS who have an increase in blood pressure when they stand up, and then sometimes they're termed hyperadrenergic now, but I wouldn't get too caught up on the subdivision. Okay, so we're not just talking about POTS today. I wanted to talk about all the loose connections, pun intended, because loose connective tissue is one of the features that ties a lot of these disorders together. So this connection was actually first identified by one of my former mentors at Johns Hopkins, Dr. Peter Rowe, identified this in 1999, so quite a number of years ago.

15:58He saw that a lot of his patients with chronic fatigue syndrome and Ehlers-Danlos syndrome also had orthostatic intolerance. So these disorders that are connected, I want to make the note that we don't have any causal links that have been confirmed between these disorders. We just know that they tend to occur together. And there's a lot of theories on like what causes what, the Ehlers-Danlos syndrome community blames a lot on connective tissue, which is a feature of all of these disorders having loose connective tissue, but we don't know if that's causing it. The mast cells can actually damage connective tissue as well.

16:37They can autoimmune, the immune system can damage autonomic nerves, but then also heightened sympathetic activity can cause immune dysfunction in the mast cells and also the causing autoimmune activity. So we really don't know what's causing what. We just know that these syndromes tend to occur together. Okay. So I want to discuss the triad specifically. So this is hypermobile EDS, POTS, and mast cell activation syndrome. I like this Venn diagram that kind of shows the similar symptoms in the middle and then what's specific to these certain disorders. and I want to mention in the triad that you're more likely to have all three of these disorders than just one or two of them so if you have symptoms of one you probably have all three and I don't think the point is to collect diagnoses it's really to find answers to what is explaining your syndromes and to find a diagnosis that you can then that would then lead to a treatment that will improve your quality of life.

17:44So why would you just have one problem when you could have all three of these? Since I talked about the diagnosis of POTS, I wanted to talk about how hypermobile EDS is diagnosed. A lot of people try to get to a geneticist, which I'm not against. It's just that a lot of geneticists don't want to see hypermobility or hypermobile EDS because there actually is no gene that they can test. We don't have a single genetic mutation. We're still looking for probably multiple genes that are inherited together. There are lots of studies ongoing investigating that. But right now, a geneticist can't really run any tests to diagnose you.

18:26So unless you suspect you have one of the rare types of EDS, not the hypermobile type, going to geneticist isn't always necessary. there's actually this checklist that I have the QR code to that was developed in 2017. It's free, the Ehlers-Danlos Syndrome website, that you can check off the different symptoms of hypermobile EDS. It's designed for any medical professional to use, not even just doctors. It can be used by therapists as well, or physical therapists, occupational therapists, to see if someone has EDS. And you can even go through it. There might be some terms you don't know on it, but I'm sure you can figure it out.

19:06So it's something you could fill out and then show to a doctor. Okay, I wanted to go into the connection now between some of these syndromes and ADHD. And unfortunately, there is not a lot of data. We just know that they tend to occur together. But there are a few studies. So one of them that I wanted to point out was the study done by Dr. Eccles, who is a neuropsychiatrist in the UK. I think that's what she does. And she looked at people with different neurodevelopmental disorders, autism and ADHD. And she wanted to look at the prevalence of joint hypermobility in this population. So what she found was that if you have ADHD or autism, you are two to four times more likely to have significant joint hypermobility compared to healthy controls.

20:05Now, this was based on the Biden criteria, which is part of the diagnostic criteria for hypermobile Ehlers-Danlos syndrome. There was a slower rate when they made the cutoff age-specific versus just the cutoff, the natural cutoffs for age 18 to 60. So that's why it varies two to four times, but it's still significantly higher prevalence than in the normal healthy population.

20:36Okay. There was a very good study that actually came out in 2009 by Vidya Raj, who was married to the very famous Satish Raj, who does a lot of POTS research, and she looked at ADHD behavior in people with POTS. So something interesting she found, she did this ABCA checklist, which I'm not super familiar with. I'm not the ADHD expert here, but I'm telling you about POTS and the connection. um she found that pots uh patients tend to have higher prevalence of adhd in behavior in the past six months when they took the survey so when they were evaluated at vanderbilt just like a large autonomic dysfunction lab but didn't have a lot of symptoms in childhood which is interesting because a lot of times adhd symptoms should occur you know before age 12 um inattention subscores on this behavior were highest.

21:36So there's not a lot of hyperactivity that was occurring in people with POTS. And then there was also a perceived reduction in the magnitude of inattention as the POTS was treated. So the severity of their POTS symptoms matched a lot with their inattention scores. This was a small study. There were only about 20 people in each group. But there are very a few studies looking at this in POTS.

22:09We also have more data on cognitive function in general in POTS. This was something that my former mentor for my postdoc, Amy Arnold, did a lot of, and then we did some of it together. So she looked at executive function using the TRAILS-B test, which maybe you're familiar with, where you go from A to 1 to B to 2, etc. And there was, the people with plots were slower at this test significantly compared to age education match controls. She also did the Stroop test. This is when you see, you know, words in different colors and you have to override the command with your executive function because you read faster than you recognize colors.

22:50So you have to say blue, even though your brain is thinking red. So it's an executive function task. So those scores were lower too. Now she did these tests while seated. and there were still deficits in POTS or I think it was semi-recumbent. They were like laying but not completely flat. So then there were several studies that looked at what happens when people with POTS try to do cognition when they stand up. And basically, this study was actually in adolescence and this was a working memory test called the NBAC test, which is actually pretty hard, especially when you get to like the foreback.

23:27So what they found is when patients, people with POTS were tilted at higher angles, so they start flat and then they tilt to like 15 degrees, 30 degrees. I kind of have these lines here showing like the different tilt angles. They perform worse as they get to the higher levels of tilt. So the more upright the people POTS were, the worse they did on this memory task. And similarly, they started doing worse than controls as the test got more difficult. So I think there's two points that often misses the cognitive dysfunction in these disorders in general. Sometimes you're not given a test that's hard enough, and sometimes you're given the test seated when you don't have symptoms.

24:08So those are two issues with testing cognition in POS and probably ADHD as well. So then I did some research with Dr. Arnold where we actually had people do these tests while lying down and then standing up. We did this at the Dysautonomia International Patient Conference back in 2018. Seems like a world ago now. And we found that executive function scores were just lower in posture and posture didn't really seem to affect this. And then we did, so we found that there was mild impairment in executive function in about 30, sorry, in about 10 % of POTS patients. And this was much higher than the prevalence in healthy controls, which was about 3%.

24:57Okay. So we also did an attention task at this conference study. So this was just at like simple attention, asking people if the card was read and like checking. It was based on their time of like response time. So the selective attention, the times were higher in patients with POTS, which means they were slower. So they were worse at this task, especially while standing. There was actually no difference than controls while they were lying down. But with standing, the people with POTS tended to do worse. So attention seems especially driven by the posture. So I wanted to give an overview of some cognitive issues in POTS and compare them to ADHD since I presented a lot of data there.

25:46So one thing is executive function attention are impaired in adults with POTS. Most people with POTS have adult onset inattentive symptoms and insignificant in hyperactivity. And then in POTS, we also see that cognition worsens with the upright posture or standing. Some possible reasons for this cognitive dysfunction in POTS that have been theorized is that an increase in catecholamines in POTS might disrupt attention. So it's hard to keep focused when your sympathetic nervous system is giving that rush of adrenaline. the physical symptoms that people experience such as headache nausea pain fatigue often makes it hard to focus and do well cognitively also decreased blood flow to the brain like i mentioned that happens in pots when patients are upright that could mean less energy input to the brain less nutrients so it's harder to complete a cognitive task if you're not getting enough glucose and energy and oxygen and things you need to your brain.

26:54And then I'm also doing this study that I don't have data from yet, but we're actually looking at how with fMRI, functional magnetic resonance imaging, how people with POTS actually activate their brain regions during different cognitive tests. And we think that might just be disrupted, that we're not firing the right areas of the brain at the right time. okay so i'm going to put this all together and big caveat here um to why adhd dysautonomia and hypermobility occur together the short answer is we simply do not know um but there are a lot of theories about this and i want to go over some of the leading ones with you so one of the theories is that connective tissue that is you know too hypermobile in the joints and causing joint pain and things related and instability, things related to that.

27:47It's not just in the joints. It's everywhere in the body. So I did a study showing that it's in the vasculature, even in people without vascular EDS, just with hypermobile EDS, their vascular is too compliant, too stretchy. But it's also in the nervous system. So it could be that it's disrupting nerve function as well. It could be that it's affecting brain function. So that could be one of the commonalities that's driving the connection between these disorders. Interoception and proprioception are two features that are common in all of these disorders. So interoception is like sensing your internal body signals.

28:29So some of those autonomic signals that we're usually not aware of until they're going wrong. People with POTS are, you know, sometimes get incorrect signals. And same with ADHD, that you're not able to sense what's actually going wrong in your body the right way. And then I call it shared clumsiness. So proprioception, which is sensing your body position in space, are also common features in these disorders. So people with joint hypermobility have trouble feeling where their joints are. They can't tell if they're hyperextending something. They often crash into things. And people with ADHD are also known for being clumsy and not having great spatial awareness.

29:07This could be a connecting factor. There is probably some shared genetic architecture that's happening. So we know that POTS, hypermobile EDS, and hypermobility spectrum, as well as ADHD, autism, they tend to cluster in families and have a strong inheritance pattern. We don't know the genes specifically for any of these, but it's possible that whatever genetic mutations that are leading to these are co-occurring. So they might have shared genes, they might have mutations that are variations that occur together. So they might be inherited together. It's a possibility. Autonomic nervous system could be the driver that connects all of these.

29:53So the impaired autonomic regulation could affect cognition and attention because of the increased adrenaline raging through the system and decreased vagal tone. And there's actually some data improving vagal tone for cognition. So these are just some theories. I wish there was more data on all of these, but I think if we do this in five years, we'll probably have some data here. Okay. I wanted to go into some of the treatments for POTS, HEDS, and MCAS in case you don't know where to start. One of the simple things you could do on your own is try out compression. So compression is something that's been shown to help for both POTS and hypermobility.

30:39You can either get like, there are prescription, you know, compression leggings, stockings, you can get these on your own as well. They're just very expensive. There's also athletic compression, which is sometimes more fashionable, more tolerable. Basically, you have to find something that you can tolerate that helps. So it's kind of trial and error there. There are studies that show that the abdominal and leg compression are ideal for POTS, probably abdominal helping more than just like socks alone. But if you can do compression throughout the legs and the stomach, because I talked about the gut vasculature pulling a lot, like that can really help.

31:19So what does that mean practically? Things like Spanx, high-waisted leggings. If you want to try like the Jopest or, you know, medical grade compression stockings. If you, you know, they're not very comfortable, but you can try them. There are also some studies in hypermobile EDS and hypermobility spectrum that they can, wearing compression can increase your proprioception, your sense of body space, so that you can feel more where your joints are at when you don't have a lot of feedback because of that connective tissue. going on with non-pharmacological things some dietary interventions that are known to help a lot of these disorders first thing is increasing fluids really as much as possible but you don't want to over hydrate and under salt so with that the recommendation for pots is actually to have nine grams of added sodium to the diet or added salt sorry i'm gonna upset the chemists in the room.

32:17So added salt to the diet, which is the amount that's in a bag of IV saline. So that's where that recommendation came from. Basically, you want to have as much as possible. Nine grams is actually really high target. Like a pack of an electrolyte mix is usually like one gram. Same thing with like salt supplements. You can also add salt through different, you know, from just table salt to the things in your food. Eating small meals with high protein is often recommended for POTS to prevent that blood pooling. That often happens with especially high-carbohydrate meals, but there's no perfect diet for anyone.

32:56I'll say that. One thing is not going to work universally for this population. Eliminating food intolerances, which could be different for everyone. That's something very common, especially in MCAS, but in all of these disorders. Gluten and dairy seem to be very common intolerances. Sometimes if people have more like like IBS, lower intestine symptoms, doing that low FODMAP diet to figure out your triggers is helpful. I want to mention those IgG food intolerance tests are not reliable, and I wouldn't waste your money on them. Yeah, there's no curative diet advice. There's also no specific anti-inflammatory diet that's kind of like a hot topic now.

33:36There's no one food that's inflammatory for everyone. It really depends on the person. there is some research on in older adults that caffeine especially coffee was used in that study prevents postprandial hypotension which basically like the drop in blood pressure that can happen after a meal so if that's tolerated that's something you could try and then something I like to mention no one wants to talk about poop but treating constipation aggressively and preventatively is something that seems to really help patients a lot of times people don't worry about it until they've already been backed up for a while, and then it's much harder to treat than to just, like, keep it moving.

34:17Okay, so just some data from this questionnaire study of a large POTS survey, which is about 9 ,000 participants. Kate Bourne did a lot of the work on this. This study was a collaboration just on Gnome International and Vanderbilt University. um so anyway they found that people with pots increased more had more symptoms following a high carbohydrate meal or a high fat meal but high protein meals did not increase their symptoms so i mean take that with what you will um high protein seems to be a big trend now this is actually there is some evidence now accumulating about um glucose insensitivity in pots so there's lower glucose tolerance basically and there's more of this hormone that's released that can cause vasodilation so there's a lot of science now backing this up and actually that people with POTS might be more similar to like a pre-diabetic state because the autonomic nerve system does control insulin and glucose production um yeah even though people with POTS are usually at a normal weight and don't have these metabolic risk factors they seem to have disrupted glucose post-regulation.

35:27Okay. I added a little more on MCAS. It's not my favorite topic because it's very complicated and we probably know the least about it. So I just wanted to mention mast cells. They're these nonspecific immune cells that can react to lots of different things.

35:44Norepinephrine is released with this neuropeptide that can actually degranulate or like activate these mast cells. And when they degranulate, they release histamine, which causes a lot of vasodilation. So this creates like a feedback loop with POTS that both of them like worsen each other. And they have very similar symptoms. Some symptoms that are mast cell specific are usually the flushing, chemical sensitivity. So sensitivity is like smell and food, even if you just smell it sometimes, not just eating it, but eating it obviously can cause worse symptoms. Swelling, trouble breathing, tachycardia, and like most of the POTS symptoms.

36:26So the diagnosis is very different for mast cell, very difficult for mast cell activation. And if you see a normal allergist or immunologist, like they probably, they're used to mastocytosis or like allergies, but not really this syndrome. So you have to track for the official diagnosis, you have to track urine and blood markers of histamine and tryptase, but you have to catch them during a flare, which is really difficult. So it's very hard to get diagnosed. A lot of clinicians who treat MCAS are the ones that are also treating POTS and these related conditions. And most of the time they just tell people to try, especially the over-the-counter treatments for MCAS, like histamine blockers, which are the newer allergy meds like Zyrtec, Allegra, Zizol.

37:19Those are H1 blockers. And then H2 blockers are Pepsid. So even if you don't have acid reflux, they still might help the MCAS symptoms. And often they see if people have some kind of response to this treatment. And then there are also other treatments that are mast cell stabilizers, glucotriin inhibitors, biologics. There are a lot of options to control the mast cells. One of them that's interesting that helps a lot of people, cromaline sodium, is actually like a liquid that you drink before meals. So especially if you have a lot of food reactions, this can kind of like coat the GI tract before you eat.

37:57Yeah, so there definitely are treatment options for MCAS. And just calming down the immune response to these triggers is really how you go about it. But the diagnosis is really unclear. Even, you know, the experts in MCAS that I talked to, they're not sure how to diagnose it. I wanted to go over some of the gastrointestinal issues that were common in this population, since these tend to be the most debilitating symptoms. And I kind of made this chart of like, where you should go to for them. I think registered dietitians are underutilized, not a nutritionist. That's not a credential. So you really want to target like a registered dietitian who went to school for treating different disorders.

38:40Often primary care physicians are helpful in diagnosing these speech language pathologists for swallowing issues and also finding a gastroenterologist who's interested in motility because a lot of gastroenterologists will just, you know, are more interested in like scoping you doing the basic blood test and saying that's it um so you need to find someone interested in motility since that's usually the problem that happens in dysautonomia in these conditions um okay i wanted to bring this in a study that i actually did with my pt students earlier this year we were serving people who had service dogs and for dysautonomia specifically and the service dogs tend to improve their quality of life way more than anything else.

39:26So if you want to get a service dog, obviously there's costs associated with this. There's problems with having a dog for a lot of people, but I would say try it if you're interested. It seems to be more effective than anything else. There are also different exercise programs, especially for POTS, and they can be adapted for people with hypermobility as well to protect the joints. The key things with these protocols are to start supine. Often swimming is helpful because it adds some compression in the water. You just have to be careful when you get out of the water. And then you want to gradually increase the exercise and get to the standing exercises as you progress.

40:10Physical therapy and occupational therapy, I think, are really underutilized in these problems. For joint hypermobility, you can't change the connective tissue in your joints. What you can do is you can strengthen the muscles around those joints to protect them and keep them more stable. You can also work on strengthening core and leg strength so that you can pump blood more efficiently, which is really helpful for POTS. You might need help modifying exercises and pacing them correctly, which I think a physical therapist is really ideal to help with that. There are also other issues that these therapists can treat like vestibular problems, pain, proprioception, balance, and even pelvic floor PT because sometimes in the digestive issues especially, the pelvic floor isn't working as it should.

40:58Pelvic floor dysfunction is really common in hypermobile EDS, especially after pregnancy. So that's somewhere to go. I'll briefly go over some pharmacotherapy. I wrote this review back in 2018, which isn't super outdated, I don't think. I wanted to highlight some of the treatments that are similar with ADHD. So we actually use stimulants in POTS, one for vasoconstriction, they actually tighten the blood vessels, and also to help with the cognitive symptoms and wakefulness. And then guamphacine is sometimes used to suppress the sympathetic nervous system. And I know that's used in adults with ADHD as well.

41:38The problem with stimulants is they can sometimes cause excessive tachycardia if you have POTS, but we don't see that all the time, especially when they're combined with a beta blocker. But the other thing is we don't have any evidence that they help with that brain fog or cognitive problems in POTS. They just tend to help people feel better, which is good, but we just don't have any hard data. So my last slide is where do I start if I have some of these problems? The first place I tell people to go is a local primary care doctor, someone who's willing to work with you who may not you know, be an expert in all of these conditions, but is likes figuring out the problem and doing things to functionally help you.

42:22And this could be, you know, family medicine, could be a physiatrist, like physical medicine, rehab, could be cardiology or neurology, but often it's easier to find someone local. And then I mentioned like looking at the big picture, like what's going to help you improve rather than just collecting, you know, 20 diagnoses. Don't forget the therapist who can help you improve function, PT, OT, SLP. And then you can try some of those lifestyle changes, non-pharmacological treatments while you're waiting. If you want to see any of these specialists who, you know, treat EDS, NCAS, autonomic disorders, they're going to have wait lists.

43:04But I would get on the wait list and then keep trying stuff before you get there. Everything's going to take time, trial and error. You're going to have setbacks and flares along the way, and you kind of just have to keep trying. Keep looking for answers that will help improve your care and then also do the management part on your own. I wanted to mention this resource with the Dysautonomia International State Support Groups where people are discussing what clinicians to see in their local area And also there's a map where clinicians put themselves on the map. So I do want to leave time for questions because that's my favorite part.

43:43I have some quick acknowledgements of mentors and people have helped my research along the way. But yeah, I'll go back to Carol and I'd love to take questions on these topics. Thank you so much, Dr. Miller, for such a comprehensive presentation. um also you had mentioned dr jessica dr jessica eckles who is at the forefront of this research she presented at a webinar for us in may 2025 and that was podcast 560 if you want to listen to if you want to listen to that i think our um our audience members would really um learn a lot from that. It was terrific. And on Attitude's landing page, we've posted articles from her that feature her research on these conditions.

44:31So everybody can go to attitudemag.com and see that. And then, quote, some of us have spent over$20 ,000 looking for adequate, knowledgeable doctors that are accessible. And this comment came from a now retired physician who said he treated adults and children with ADHD for almost 40 years. He said, most physicians do not seem to be trained adequately to even question patients regarding ADHD, let alone many co-occurring conditions. And finally, another person said, wow, over the years, I've wondered things like, Why do I turn purple, sweat buckets, and feel like I'm on fire when everybody else enjoys the warm weather?

45:19Did I go through menopause before puberty? Okay, so now to our audience questions. As our polls indicated and our audience members were telling us that doctors don't seem to know enough about these conditions in order to give a proper diagnosis. do we know what's happening in medical education to counter this? Yeah, no, that's a great question. And that's a common experience that there is this diagnostic delay that a lot of clinicians are not trained on how to diagnose or treat these conditions. And then, you know, once they run the basic test, they kind of say there's something wrong with you and either dismiss you or refer you to someone else.

46:06and you can spend years in just referring to different specialties and different doctors. I mean, the reason I'm in academia is because I want to change this educational landscape. I've done a lot of continuing medical education courses. I used to teach in the cardiology course for the med school where I was a postdoc. And now I teach physical therapy students. And I can tell you my physical therapy students, not just in my courses, in other courses, they learn about EDS, POTS, probably not MCAS. but we could add it in somewhere. I think the landscape is changing. I did hear from colleagues in PA schools that their physician assistants, that they are starting to learn more about POTS and EDS now.

46:52And in med school, I think it's probably because there are so many things that students have to learn. And the focus hasn't been as much on these functional disorders, you know, things that don't have clear biomarkers that we can see and treat. It's always harder to, you know, recognize the things you can't see. But we're trying to find more biomarkers in POTS and these disorders, and hopefully that'll help with being able to diagnose and treat them faster. Okay. We have a question. Are there any additional tests that patients can request if standard testing results don't line up with a symptom pattern, such as a table tilt test for POTS, to ensure thorough testing and an accurate diagnosis?

47:37Yeah, the table test is kind of controversial because, first of all, a lot of places don't perform them, and if they do, it's often like a year wait, and then people can have varied results on different days. I'll just say for my example, I've done so many research studies on POTS that I, you know, Some days people faint, some days they don't. And we have healthy people who faint on tilt tables too. So the reliability of some of these tests isn't great. What I would recommend on testing is probably like for the gastrointestinal symptoms, especially those like motility tests with a gastroenterologist who understands motility instead of just imaging studies.

48:21For POTS, having those orthostatic vitals and even tracking them at home on your own and then being able to bring that data into the clinician so you can do the standing test on your own because it's possible different days, different triggers, different temperatures, other things can affect those. And sometimes they're not performed correctly. Like I've seen cardiologists who do them seated and then standing, which is fine for some population, but for POTS, that's not part of the diagnostic criteria. So unfortunately, a lot of this is like becoming your own expert and figuring out like what you need because the medical professionals won't always recommend the right things.

48:58Yes, we are learning that more and more. What is the long term outlook for those diagnosed with POTS in youth or as young adults? And do we ever outgrow it? Someone asks. That's a great question. The literature until very recently would tell you that most kids outgrow POTS, although we've realized more and more that what they're outgrowing is the pediatrician, not POTS, and we don't really track when they go switch to adult care. um so what we're seeing now there was actually one of those large survey studies that um did a five-year follow-up in patients with pots and over five years we see that most improve they don't have a complete resolution of their symptoms um and there are those flares that can happen throughout the lifespan similar to autoimmune diseases but what i think does occur newly diagnose patients or patients without a diagnosis, they don't, they're not in that management phase and people learn what works for them over time, what improves their symptoms, how to avoid triggering their symptoms.

50:05So I think there's this huge part of learning what helps that eventually helps people manage it better. But the rate of people, you know, miraculously being cured, that's pretty rare. Yes. Someone asks, could an undiagnosed adult with POTS later be Well, I don't know that it matters if you're undiagnosed or diagnosed, but if you're diagnosed with POTS, could you be at risk later for Parkinson's disease? Hmm. I don't think we have data on that. It's possible. We do know that, I don't know if there's an increased prevalence with POTS, but for Parkinson's disease, often it's the autonomic symptoms that appear first, often like decades before the movement symptoms.

50:50So I wouldn't say no, but I don't think we have great data on that. And I wouldn't necessarily worry about it. Okay. You mentioned service dogs are helpful. And someone said, in what way is having a dog helpful for someone with POTS? That's a great question. I wish I could show you like all my data on service dogs. So the tasks that the service dogs for POTS are doing are medical alerts. So they're alerting before people have low blood pressure or tachycardia, you know, risk of fainting. They are doing this thing called counterpressure where they, you know, a large dog can like lay on you to like help restore blood flow.

51:34Some people are using their dogs like mobility balance aid. So using it more like leaning against the dog for support. Sometimes they're like fetching things so that people don't have to bend down. So it's like they can fetch like water or meds. They can, you know, if you drop something, they can, so you don't have to bend down, pick it up, which could cause symptoms in someone with POTS. They can assist with that. Sometimes it's alerting other people, increasing independence out in public. I've seen some larger dogs help with pulling wheelchairs, things like that. So it really depends on the person.

52:12And most of these service dog agencies will like customize, you know, what skills you need and recommend like what the dogs can do for you. Is walking the dog an issue for people? It can be. Yeah. So it can be a problem. I've seen the spectrum, like some people need another person to like do the care for the dog. Okay. But yeah, oftentimes people with pots can take care of the dog. It really, it depends. Okay. But there are always pros and cons to getting a service animal. Yeah. Someone asked, could you please talk about ADHD treatment in concurrent POTS? Some ADHD meds can make POTS symptoms worse.

52:54And you did mention this before, but could you talk a little bit more about that? Yeah. So there's, first I'll say there's not a lot of data, but we do use stimulants in POTS occasionally. And it's a little controversial because it seems like the ADHD meds that don't affect tachycardia as much are actually like the immediate release ones that are people try to steer away from now in ADHD, like, you know, just the methamphetamide and Ritalin. I think people expect there to be a lot of tachycardia with different stimulants, but we don't see a ton of it. And if there is, it can often be counteracted by a beta blocker or colon or like a medication that decreases heart rate that the person might need anyway.

53:42But they can definitely help with the vasoconstriction, which is a problem in POTS, and with the energy and focus. So they often are used concurrently. There are several POTS patients who still take stimulants, but if there is too much tachycardia, sometimes the non-stimulant ADHD meds will be helpful or a different one. Okay. We have a question around the hormonal shifts involving perimenopause and menopause. And do these, is there a connection between some of these disorders and do these hormonal shifts make these disorders or symptoms worse? Yes. I'm actually going to start before menopause.

54:24The most common, well, one of the most common triggers for the start of POTS in young women is menarche. So the start of periods, you And then a lot of people develop these syndromes postpartum as well or after weaning, after stopping breastfeeding. So hormonal shifts are definitely playing a role. All these conditions, I don't know about ADHD, so taking ADHD out of this, affect women more than men. So there are definitely roles to the hormones in this. After menopause, there's actually probably less risk of POTS. I wouldn't say that it goes away, but less people develop POTS at that age. But then there's actually a greater risk of hypertension and other autonomic blood pressure disorders after menopause.

55:12So estrogen actually vasodilates a lot. It decreases joint stiffness, so it can cause more of that hypermobility. So actually, at different phases of the month and during pregnancy, people can have more lax joints as well. so um yeah there's definitely a huge role of hormones not a lot of research in it but they're definitely doing something um someone wrote my husband and my son are hypermobile um they they both jog and run in a similar manner where they look very uncoordinated like their upper body is sort of gliding as they run is this a telltale sign of the condition has a study ever been done on the running posture of this population?

56:01I don't know for sure about, I mean, I haven't, I couldn't see these people run. And I don't know if there's any studies on like running posture in EDS, but definitely like the lack of coordination, the proprioception could be hints at EDS. There's definitely like the coordination and the hyperextending of joints. I'm actually doing a biomechanics study in people with EDS. They tend to sway more is what we're really finding, like when they stand. So there's definitely a role in coordination and movement. Yeah, I can't think of any say specifically, especially in runners. There aren't a ton of runners with EDS.

56:41Do these symptoms change as one ages? That's a great question. we don't really have like um longitudinal data i would love for there to be more like following the natural history of these disorders they're kind of new that's part of the problem like was only defined in 1996 um hypermobile eds was was around you know for a long time all these things have been around they just had different names um or they weren't identified as much but yeah we don't really know the natural history and whether people get worse or better over time or just learn to manage it. Yeah. Okay. Well, that pretty much concludes our presentation.

57:27We're almost out of time. So Dr. Miller, I wanted to thank you for sharing your expertise with our ADHD community. We appreciate it very much. Thank you. Thanks for having me. Oh, absolutely. We're thrilled to have you. And thank you to everyone here today. If you would like to access today's event resources, visit attitudemag.com and search for podcast 627. The slides and recording are posted a few hours after each live webinar. If you're listening in replay mode, simply click on the episode description. Please know that our full library of Attitude webinars is available as a podcast. It's called the ADHD Experts Podcast, and it's available on most streaming platforms.

58:13Get alerts for future Attitude webinars by signing up at attitudemag.com slash newsletters. And thank you everyone and have a great day. For more Attitude Podcast and information on living well with attention deficit, visit attitudemag.com. That's A-D-D-I-T-U-D-E-M-A-G.com.

58:44Amanda Miller: This episode is brought to you by Progressive Insurance. Do you ever find yourself playing the budgeting game? Well, with the Name Your Price tool from Progressive, you can find options that fit your budget and potentially lower your bills. Try it at Progressive.com. Progressive Casualty Insurance Company and Affiliates. Price and coverage match limited by state law. Not available in all states.