Linking Ehlers Danlos and POTS to Neurodivergence

Summary
In this episode, Maria and Tabitha explore the intricate connections between neurodivergence and connective tissue disorders, particularly focusing on Ehlers-Danlos Syndrome and POTS. They discuss the prevalence of these conditions in women, the role of collagen in bodily functions, and the challenges faced by patients in the healthcare system, including gaslighting and misunderstandings in treatment. The conversation emphasizes the need for better education, advocacy, and understanding among healthcare providers to improve patient outcomes.

Takeaways:

• Neurodivergence and connective tissue disorders often overlap, especially in women.
• Research on these conditions is limited, particularly regarding sex differences.
• Collagen plays a crucial role in connective tissue health and related disorders.
• Patients with POTS often experience symptoms that are misattributed to anxiety or neurodivergence.
• Gaslighting in healthcare can lead to misdiagnosis and inadequate treatment.
• Understanding autonomic dysfunction is key to addressing symptoms in patients with POTS.
• Stimulants may actually help patients with POTS rather than worsen their symptoms.
• Education and advocacy are essential for patients navigating the healthcare system.
• Healthcare providers need to listen to and validate their patients' experiences.
• Arming patients with knowledge can empower them to advocate for their health.

Chapters:
00:00 Introduction to Neurodivergence and Connective Tissue Disorders
00:27 Patterns in Neurodivergence and Connective Tissue Disorders
04:55 The Role of Collagen in Health
06:49 Understanding Autonomic Dysfunction
10:39 Gaslighting in Healthcare
16:17 Treatment Approaches and Misunderstandings
19:35 Advocacy and Seeking Care

#neurodivergence #connectivetissuedisorders #ehlersdanlos #EDS #podcast #psychiatry #ADHD #autism #POTS #mentalhealth #gaslighting #healthcare #advocacy #mentalhealthawareness

Transcript

0:00

Hey everyone, welcome to Brain Trash from DSM to Dumpster Fire. My name is Maria. We're psychiatric nurse practitioners and this is our podcast where we talk about mental health, we talk about the good, we talk about the shitty, we talk about the weird things and all the things that no one else is talking about. So if you want an unfiltered look and some ranting about how much psychiatry can suck sometimes, being the people that were in it, this is your right place. So sit down and we're going to talk about connective tissues and neurodivergence today. Today we're talking about neurodivergence and connective tissue disorders, Ehlers - Danlos, all of those interesting things that often overlap a lot with autism and ADHD. So Tabitha, you've been in practice now for some time. We see a lot of neurodivergence in practice. When did you start seeing a pattern evolve with neurodivergence and connective tissue disorders? feel like it was pretty early on, like I just started to notice, like, I had this large caseload trend of women who are experiencing, like, multiple autoimmune disorders, connective tissue things, MCAS pots, right? Like, some of these things that women get gas lit for in healthcare? And also meeting criteria for... ADHD, autism, both. there's a big part of me that's like, why is this a thing? Right? And I'm pretty, pretty often wanting to know the why behind things. And the further I searched for answers to that, the more questions I had because all of the, I shouldn't say all, but most of the research I found was like, we're not really sure. This was really complicated and we should look at it further. But like, is anybody looking at it further? Because this is like, really common. So. And we were just having the discussion before this where we were looking at like all of the research and kind of what's out there. And we were talking about how it's interesting because like there's not a whole lot on it. That's like sound evidence-based, right? But now there won't be because there's a ban on women in research, right? And these are things that are highly prevalent in women. So there are some statistics around like those syndromes and neurodivergence. So like what's the, what are like the stats for men to women that we have on like some of these disorders? I feel like pretty much every single connective tissue disorder that I've ever looked up has a huge, huge amount of women versus men that are diagnosed with these things. So when we look at like NIH funding being taken away from studies that are focusing on specifically different things between sexes, it frustrates me to no end. like hypermobility, I want to say, I don't remember the exact number, but more prevalent in women than men. MCAS was like four to one women to men. POTS three to one. Some studies say five to one, right? So this is a huge amount more women than men that are affected by these things. is why. would we not be able to say, you know, what is it that's different that is making this happen? EDS, Ehlers-Danlos, and I think more so that the hypermobile type, but there's a bunch of different types of them. 70, 80 percent of those cases are women. So like, how are we supposed to understand why if we're not allowed to look at that specifically in the context of sex? So I don't know. I don't know the answer to that. We don't and we're just gonna have nice little podcasts on all of the things that have no explanation now for us. But what we also know is not only is it more prevalent in women, but all of these are strongly more prevalent in neurodivergent conditions. So I think some of them like EDS hypermobile type was like 30, 40 % of people with EDS had relatives with ADHD or autism versus only 3 % of the general population. which is kind of a massive difference, right? So there's obviously connections there and we're gonna talk a little bit about what that connection is and like some of the perceived maybe-wise behind it. So some of the things you mentioned were like MCAS, hypermobile, EDS, or other stand-offs, we'll call it. POTS, also something we see a lot. Anything else you can think of we also see a lot? a lot of the connective tissue stuff and then roped in with those for a lot of these patients I see in practice is like you know chronic fatigue syndrome, fibromyalgia, there's lots of connective tissue stuff right? I'll see like slipped rib syndrome or I don't even know is that exactly what it's called? There's a bunch of them like this where they kind of all snowball into each other but they're all rooted in this connective tissue dysfunction. Okay, so the connection between that and neurodiversions. So what we've kind of like seen from the research is that everything comes back to collagen. So what collagen is, is it's a building block of connective tissue. What is a connective tissue? A connective tissue is looking at like what holds our body together, what connects our body. So when we're looking at connective tissue, we're looking at like... holding our joints and our muscles together, like what's holding your organs in place, like what's holding everything in place, but oftentimes like what we don't realize is our vasculature also has collagen and connective tissue involved in it. So when we think of veins and you're not in medicine, you might think of your veins as just like, they're just chilling in here, right? They're not doing anything, your arteries, they're just kind of existing. Your heart's doing all the work to pump through the blood, right? No, your veins are like brilliant and your arteries are like brilliant and they can actually like adjust to things and they're doing their own job and their own. work and that's because of connective tissue that's able to do that. So it's able to kind of like adjust to pressures and blood pressure and do all of the things around blood pressure by themselves because of connective tissue. So we know that things like EDS are related to a collagen defect and connective tissue problems, right? So when we start having issues with those things, we often have issues with our like ability to have good posture, which we see in autism. the W-set, like my daughter has, very much related to connective tissue and structural stability of the body, POTS related to EDS and all of those things. So collagen and connective tissues are like wildly implicated in... all of these things and all of these things are connected like the inflammation, there's like IBS, there's leaky gut, all of these things like there's collagen and connective tissue in your GI system. So we know all of these things can kind of run together, and fibromyalgia, but how does that relate to neurodivergence? again, we get back to the same spot where it's like, I would love to know that, right? I would love to know definitively, here's why. But some of the things that we look at is this concept of like, autonomic dysfunction or dysautonomia or ways in which the sympathetic nervous system is affected by either dysfunction or differences in the way that connective tissue works in our bodies. So for example, right, we look at pots. Again, like, like Maria was saying, there's a lot in the vasculature that causes our body to compensate hemodynamically. So to move our blood different places, that really helps to make sure when you go from sitting to standing, your blood pressure and heart rate adjust to that. positional change, but when you have POTS, your body maybe overcompensates. And so this or undercompensates, right? So if you have a lack of autonomic tone in your vasculature, when you stand up instead of your blood vessels constricting and helping to get that blood to go against gravity, they're kind of like, meh, we don't know if we want to. And so then your heart is like, I gotta figure out how to get the blood where it's going. And so that's how we see the tachycardia, right? So that is just one example. And one of these disorders, how connective tissue impacts the symptoms that we see. Now, a lot of what I find on POTS though, specifically, is that like, these people have symptoms of neurodivergence because they're not getting enough blood flow to their brain. So they have brain fog. maybe. Maybe there's a bit of that in some ways, but it's also, isn't something that's happening all the time. It's in a very specific setting, so if somebody is not experiencing that, in theory they would be able to utilize their brain just fine when their blood flow to their brain is just fine. but... Was that like an ADHD push? Like maybe that's RFK coming out saying like, must be, must be the box. Yeah, must be the POTS, yeah. No, but when I sit down and seriously screen these people, right, they have symptoms since childhood. It's not something where, oh, I developed POTS, which often happens in adolescent girls and women. They develop this, and now all of a sudden I have this brain fog and these symptoms. It's like, no, they were there all along. This is just something that's now added onto that in addition to... most of them also having hypermobility since childhood and all of these other things simultaneously. So the more, like I said, the more I research, the more questions I have, the more I talk about it, the more frustrating it is that like, there's so much we don't know. And there's also so much that we probably won't get to know anytime soon, which is like so fucked for so many reasons. But the legitimate reason for me is that like I sit across from these people you know, once a month or once every few months. And I hear about the gas lighting that they're getting from their providers, the, you know, you, you know, should just lose a couple pounds and stop being so anxious. And autoimmune stuff is just because you have anxiety and, you know, trying all of these different solutions, going, spending a bunch of money on, you know, functional medicine or naturopathic doctors who are very great, but also very expensive and inaccessible for a lot of people who have multiple autoimmune things and the inability to work because of them or to, you know, make a living. So it's just really fucked. That's actually interesting. think even the gaslighting oftentimes comes from psych providers and that's something I've heard a lot. I have one patient who is autistic and also has POTS and she's been trying to get diagnosed with POTS forever, right? And every time she goes to go see a cardiologist, they're like, no, you're fine. We don't want to do the tilt table. We don't want to do any testing. They ended up sending her to a neurologist to get treated for POTS because they just didn't want to do it. And then the neurologist sent her back to me. because it's psych. So like nobody even is giving them the time of day. And I think part of the reason is because when autistic people feel things, oftentimes like we're feeling things more intensely, right? So we have the interoception thing that's going on, which means like, how do we sense things in our body? Sometimes that can be heightened or sometimes that can be like dulled down to the point where like you're going to feel nothing until it's like very intense. And then all of a sudden it's very intense. And like, there's a lot of gaslighting around, well, it can't be that bad, or maybe you're just overthinking about it, or you're anxious, but no, it's heightened because of the sensory issues and because of just being able to feel things in our bodies so strongly, right? So when these people are coming in to get help, psychiatric help, or anywhere, I think it's the way it's communicated even to the providers, like, wow, this is terrible, I'm noticing this, this is very urgent, and the provider's like, feels a little borderline to me, feels a little like, you know, attention seeking. And then they get pretty much sent home with nothing. Yeah, I feel like it's well, and even I have patients who have told me that they've gone to their cardiologist specifically and been like, I would like a tilt table test or I'm experiencing these symptoms. I think I have POTS and it's treated like POTS within the cardiology world. Now, not every single cardiovascular provider is this way, but a lot of people will treat POTS as the like borderline of cardiology, right? They're like, I don't want to put that on your, I don't, it's a fake thing or something like that. Same as like fibromyalgia. A lot of doctors, they see that in your chart and they think, well, that's not real. Or it's in your head or whatever. Right. And so there's a lot of this that happens. And I think even in treatment, this happens, right? When we're looking at how do we help these people from a psychiatric standpoint? Like you're saying, a lot of people will show up and say these things and whether the provider thinks it's borderline or thinks it's something else or. just have brain fog because you don't have blood flow to your head from your POTS. Like the reality is when we look at like, I keep on coming back to POTS just because that's the one that has the most I would say like actual research and evidence, but like what is this right? Postural orthostatic tachycardia syndrome. So when we think of tachycardia we may see somebody who has all of the diagnostic criteria of ADHD but think you know tachycardia can't have a stimulant that would be bad for you. When we look into the research though, if you're using a non-stimulant with these people like Stratera or Calbary or whatever, um, Calbary? Calbary? I don't even know how to say it. Fuck. that quailberry is what I've always said, there's no U in it, so I guess we're wrong. Right. whatever. Anyways, when we look at the non-stimulants, a lot of the research that we're finding shows like this only affecting norepinephrine actually makes POTS worse, whereas utilizing the stimulants can actually help the symptoms of POTS because it's ability, like I said, when you stand and change positions is when the tachycardia happens. So if we're causing vasoconstriction with a stimulant, we're actually helping that blood flow work against gravity in a way that it can't in somebody who has POTS. So... just being able to look into some of this and say, well, maybe this isn't like, you know, fully researched and studied and all of the things. But when we look at case reports and we look at the majority of the body of evidence that we have is like, it would actually probably most people make more sense to do a stimulant than a non stimulant. But if you just see pots and you think, tachycardia, a lot of providers are not going to allow these patients to take a stimulant. Yep, because they're going to automatically think like, well, you probably already have anxiety and now you have tachycardia, so let's just do guampicine or let's just do something else. And then the other thing is like, there's a lot of misunderstanding around POTS. Yeah, but also like there are two separate things, right? So POTS where you can have the tachycardia component. And then there's also what's called neurogenic orthostatic hypotension. So that's essentially when you stand up too fast or like you just stand up in general and your blood pools down, right? It makes us dizzy. We feel like we stood up too fast. We have to sit. I think sometimes that there's like a huge misunderstanding from both patient and like provider perspective about like these things occurring, right? So like if a patient's explaining like sometimes like my heart's racing really fast, is it that your blood pressure just dropped and you're like, I need to sit back down? Is it that you have POTS? Like what? What exactly is it, right? And even with the orthostatic hypotension, again, a stimulant would be beneficial. We know that propanolol is beneficial in the case of POTS. There's been times where I've literally told patients, just lie to your PCP and say that you have anxiety and you want to try propanolol because it's going to treat your POTS. And if they think you have anxiety, sure, let them treat it, which is kind of fucked up that we're giving advice to lie. And I think. A lot of us in psych are now kind of using that if we've done the research on pots to help our patients, but dude, that's fucking wild. Yeah, it's absolutely insane. like I said, these are the people that are like, I have such, can't even, I can't even quantify it. I would say off the top of my head, if I had to just like name people, there would be at least 40 on my caseload that fit literally all of these things that have actual diagnoses of these autoimmune conditions, connective tissue conditions, and also neurodivergence that have. spent so much time and money in the healthcare system trying to figure out like, hey, what the fuck? And nothing has really given them answers, right? So I'll coordinate with their cardiologist or their neurologist or whoever it is that's managing this. Typically get clearance for a stimulant and what I hear from the majority of them, if they are in fact ADHD and have something like POTS or other things, their autonomic dysfunction improves significantly. and they don't... yeah they're brain fog yeah yeah so i don't know But what we do know, guess, too, is that on the why they're connected, so we can stop gaslighting as providers. You mentioned norepinephrine could be high. This is something we see a lot in autistic folks, which is one of the reasons that guanfacine is so effective, especially in kids, because it modulates norepinephrine. That's also one of the reasons that we can see sleep issues in autistic people. It's something that is just kind of existing and kind of like... how it affects blood pressure and tone and all of those things. So we see increased norepinephrine and all of those things and autism. That's an overlap. We know that in autism, the vagus nerve is oftentimes like hypoactive, meaning it's like not as active as it is for other people. Like the entire like calming nervous system, the calming side of our nervous system isn't like where it should be. And then we have like the overactive sympathetic nervous system, which is our like... or go to fight, let's go to war nervous system. That one gets a little bit too active. So like those are things that occur in autism that often times can be an explanation for some of the connective tissue things, especially like the blood pressure things that could be. And then the low tone we mentioned. People with autism just have low tone in general. That's why we see like poor posture. That's why we see just some of like the... the bodily issues that happen, and then we also have poor tone with EDS, we have poor tone with all these other things. So it kind of all runs together, poor tone in the vasculature, POTS, right? So there are physiological things that we need to emphasize that are reasons why these things could be occurring. So if you are a provider, please know that, right? Like these are not people who are just like heightened... and saying like, I'm so anxious, I must have POTS, I've heard about it on TikTok, I'm just diagnosing myself on TikTok. No, this is like legitimate. And maybe we in psychiatry of all places should stop being the people gaslighting. So things that could improve for these patients, I'd say like, well, we can't know more now that women are banned from being researched. but any advice you'd have for your patients in seeking care or seeking anything. I'm trying to think of like just the major things other than what we've already talked about because I feel like the majority of what I do with them is giving the education, explaining the barriers that we have to getting answers and you know helping mobilize these people who are affected by this to be a part of making change because like the reality is like the mechanisms behind all of this are still widely unknown, right? while we have a lot of really great hypotheses, right, the things that we've gone over, like these are things that actively need to be studied that are very important, that are affecting a large enough amount of our population that it's really, really important. So to have a new time in our world where we're just gonna like not look at these things is frustrating. And so as providers, we've got to have the most up-to-date knowledge, the most evidence-based research, or at least looking at it, right? You don't have to know everything, but to be able to hear your patient say something and say, shit, I didn't know that, let me look that up, or let me look and see what I can find, you know, whether that means doing it in the appointment with the client or later on, like if you're a nerd like me going home. Yeah, exactly. we're sending each other articles. I'm sending you articles at like 9 p.m. being like, look at all these research questions I've found. Right? Right? Because I don't know, like, I don't understand, and again, everybody's different. I have a hard time being objective from any other perspective than my own, but when I see something like this so consistently that's presenting in the same exact way and I'm going there has to be a fucking link between all this, I can't not figure out why. And You know, I have joked before, does that mean I now have to go back and get a fucking PhD to do the research myself? Well now the answer to that is no, because I don't want to be a part of any research lab right now for the next foreseeable future or four years or, you know, however long. But yeah, I think listening to people, believing them, same as we've always said with everything that we've talked about, is just like. Knowing that we don't know everything is. the most important thing to know. And we are not the gatekeepers here to say like, just because I don't know about it, it doesn't mean it doesn't exist. Some of the resources I've given to my patient would be like, I think the elders Danlos society has like a directory, which I've referred my patients to, to like look for treatment because oftentimes they're going to see specialists and they're like, I don't know about this. Like, what do you mean? So having people who are specialized and trained in this important, having like a physical therapist, if you're hypermobile. who is trained in EDS and understands that there is a combination of factors that keep neurodivergence and hypermobility in the same bucket. So if they're treating you from that lens, that's a lot different than just going to a PT and having like, I'm going to go stretch. They don't know what they're doing. You can be a physical therapist and not have a specialty. So that is important. Having a pelvic floor therapist who understands hypermobility around birth, right? Like that is so important, especially because you can have all sorts of like pelvic dysfunctions because of hypermobility when you get pregnant. I would know all about that. And then looking at like occupational therapy would be like another huge thing that can help with like all of these things. So you don't necessarily think like occupational therapy would be something that adults go to or teens. Sometimes it sounds like, I don't need help with my occupation or... That's for children who need help with grasping and things. It can also help you just function when you have chronic illness, fibromyalgia, all sorts of things like that. So those would be my recommendations. One that you mentioned, the Ehlers-Danlos Society, I've also directed people there to just look at the diagnostic criteria. They have a really great handout on there that goes over like the Bait and score, Byton score, I don't know how you say it. I think it's baiting, but it goes over the different things, right? So how to check and see, am I hypermobile? Does my hands do this, right? I mean, I think the first time I saw this way back when in nursing school, I was like, you mean I'm not just double-jointed? This has always been my party trick, right? To just put my elbows back. I could do that too. I remember like the twisting and then like, remember like my tattooer being like, wow, why is your skin like that? Like they were like, whoa. Yeah. And it's not even something where it's like, hey, we need to like do a whole lot to change this. But I think arming people with knowledge and arming people with solutions to accommodating the way that they are, the way that their bodies are, the way that their brains work. This is how we go into the world and create change in some of these areas that feel like it's hard to create change in. Thank homie. Yeah. So thanks for tuning in today, guys. We hope that you picked up something new or some new knowledge or some new ability to advocate for yourself around hypermobility, connective tissue disorders, POTS, and neurodivergence. Validate yourself and know that there is a link between the two. And hit subscribe. Check us out for the next episode. We have a lot more interesting things to go over that other places aren't talking about. And no bullshit here. Thanks for tuning in.