Episode Transcript
[00:00:00]
Jill Brook: Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are discussing psychiatric symptoms in dysautonomia and comorbid conditions with Tena McLarty, a psychiatric and family nurse practitioner, specializing in treating dysautonomia and related conditions, and especially the neuropsychiatric symptoms.
Tena has a practice in Southern California and is very knowledgeable and passionate about helping patients. Tena, thank you so much for being here today.
Tena McLarty: Thank you for having me, Jill. I'm so excited. I listened to the podcast and, and before I got my POTS diagnosis, I learned, well, I still learn so much from the podcast. You have such amazing guests on here. So I'm super excited.
Jill Brook: We are so excited to have you because you are so knowledgeable and passionate about helping people with some of the [00:01:00] neuropsychiatric symptoms that come along with these syndromes. Can you talk about your background and how you became so knowledgeable and how you came to this space?
Tena McLarty: Let me tell you about it a little bit, because it was a long and winding road. And I feel like there's probably listeners out there who can identify with this and, and let's make clear, like, right away, and I'll tell you, this comes from my personal experience. Dr. Goldstein, who works for the National Institute of Health and wrote the book on Autonomic Medicine for the National Institute of Health and is just a good guy, by the way, because I one time emailed him just out of the blue and he got back to me in an hour,
to ask him what was going on. But 20, 25 years ago, I would say I started having symptoms. I have a rare peripheral neuropathy that's called Charcot-Marie-Tooth and it runs in my family. It's [00:02:00] hereditary. It's autosomal dominant. So it's a 50 percent prevalence approximately in families, unless you have the X type.
And we're finding more types all the time. And around the time I had the very first Charcot-Marie-Tooth symptoms, I also started having the first POTS symptoms. And so for 25 years, I walked around doing the things that people with POTS, I think, can identify with. I wore the, the old, I'm, I'm 46. So, I wore the Holter monitor where you had to wear a black box with an elastic band, and I think you, I can't
remember you covered it for the shower or if you took it off.
Oh my gosh. Anyway, the ones now are so much better, right. And I was told that I had various types of ventricular tachycardia and they thought it was um, idiopathic or maybe I had Wolff-Parkinson-White and then I got [00:03:00] worked up for Charcot-Marie-Tooth and they said, no, my nerve conductions were normal and you know, I had every, the the textbook POTS symptoms I was having run the ventricular tachycardia in the middle of the night that were waking me up for no reason.
I couldn't tolerate heat. And, and I had headaches every summer when it got hot. And then I was having when I thought where shin splints, which was actually just really, really mild foot drop, which is typical of Charcot. So it was all there. And I think, you know, 25 years ago and being a young woman and looking very healthy and being very active and just the, I think practitioners didn't
know as much as they do now. Nobody put it together. And so I just got sent to psych. I was told it's all anxiety. It's all in your head. And off I went to psych. And that [00:04:00] actually, I think instilled in me both a love of psych and wanting to help people and also an absolute detest... It's just lazy medicine to say, we can't find anything wrong with you, go see psych. I will say that to my dying day. I'm certain that I will also get some hate for that too, in the same way that I have gotten some hate for being interested in providing psychiatric care for people with dysautonomia. But yeah, so that was how I, I got interested, because of my own experiences and then I guess I got even more interested because, well, as we were just talking about, I, I got, when I was doing my family practice training, I got really interested in women's health.
[00:05:00] And so that was an underserved area that I started to get interested in women's health and why their symptoms change with um, ADHD especially at it during any hormonal change. So menopause, perimenopause, anything like that. And then during that time I got diagnosed with Charcot-Marie-Tooth finally.
And then I started realizing that the symptoms that I was having that were POTS symptoms again, and so this is 25 years later, so this has been going on on and off flares would happen for 25 years. And so I'm saying to myself, wait a second, I know I have Charcot-Marie-Tooth, I know that I, this is probably an axonopathy, which Dr.
Goldstein supported and also said, you know, there's no research about that in POTS. And I was like, Hey, that's what I found too. So if the National Institute of Health says so there's definitely [00:06:00] nothing there. And so then I went to my, fortunately at the time I had well, unfortunately, first I had a neurologist who completely blew me off, even though my standing blood pressure went from,
you know, a hundred teens over 70 to, as soon as I up it went to one 70 over 127 with a heart rate jump of, I think the heart rate jumped 50 points each time. And I said, aren't you worried about that? And because you, you're, you're horizontal meaning noradrenergic POTS, right? So, so am I and neuropathic.
And the neurologist said, no, he wasn't worried about that. And so I got sent to a different neurologist who is more of a Charcot-Marie-Tooth specialist, and I told him about all these symptoms and he said, you know what, that's not Charcot-Marie-Tooth, but I, I'm going to refer you to a place that I [00:07:00] really trust and that place diagnosed me
with POTS. And so through all of this time, I'm getting trained in family practice, and then I'm getting trained in Psychiatric, which had been my original plan. And I I thought I have been struggling for 25 years, and as I look through the research, there's some, but it's not a ton. And so that made me start wondering how many people are out there who need treatment and how many people are out there who need a provider.
And, and I'm the first one to tell you, I do not know everything and I certainly don't know everything because we don't have the information about everything, but also because I'm human and I just don't. But I am, I look, I am, as you said, passionate and so I look [00:08:00] and, and if the research isn't there, I try and go and look at the underlying pathophysiology and see what I can figure out.
I look at what the experts are saying in our groups and I have found the strangest thing is that the more passionate I am about taking care of other people, it seems like the less that I struggle and suffer with my symptoms, so maybe there's a little selfishness to this too. I don't know. Anyway, that was a long story, but it was kind of a long path to get here.
Jill Brook: Yeah, and I'm so sorry that you had to go through all of that, and I always, I always find that, like, the most amazing resources we have in this community are the people who have been through hell themselves. And so I'm so sorry that happened to you. And that is so lucky for us that we get you now.
Tena McLarty: I mean, I'm, I know you've talked a little bit on air about your path, and I don't [00:09:00] think yours has been easy either, and it still isn't, right?
Jill Brook: There's yeah, little things pop up. It's always something, but I was impressed because just in some of our emails preparing for this podcast, you sent me all kinds of wonderful information that I had not seen before. And you really have dug into the research. So when it comes to neuropsychiatric symptoms of dysautonomia and the related conditions like MCAS and Ehlers Danlos syndrome and hypermobility, what are the symptoms that we're talking about?
Tena McLarty: So, if you look at the research over the years, there is a 2009 paper. And what they found in 2009 was there was not in POTS a significant difference in psychiatric symptoms,
um, but there [00:10:00] was a bigger, a big difference in inattention. And I thought that was really interesting because then by 2018, another paper comes out and it actually says the complete opposite. It says there is a much lower quality of life, there's higher suicidality, there's higher anxiety, there's higher depression, and then the discussion it goes on to talk about is this something that's coming from chronic illness because, I mean, literally just do a Google Scholar search,
and chronic illness and psychiatric comorbidity. And you will see paper after paper, these huge meta analyses that tell us that people with chronic health conditions have a greater frequency of psychiatric illness. But a lot of the time we link that with a chronic illness. And so the question that we have with dysautonomia is, are, are the psychiatric symptoms, [00:11:00] neuropsychiatric symptoms or psychiatric comorbidities coming from the disorder themselves?
The really recent paper, it was in 2024, like July 2024 paper, showed absolutely every POTS patient in the study had decreased stroke volume, which we know we've seen that before, right? Which is why these I think you actually had an episode about these really expensive inpatient conditioning programs and why they do or don't work for some people.
And there's a ton of reasons for that because stroke volume isn't all that they found. What the other thing that they found that's fascinating to me is the middle cerebral artery, so the biggest artery that runs as it sounds like in the middle of your brain. It's way deep in there, and it's huge. I used to work in neurosurgery a lot, so I've seen this thing and it's huge and it's pulsatile.
With POTS patients, they found it was less pulsatile. So, [00:12:00] I think Dr. Blitshteyn has put out research in the past that's talked about the hypoperfusion, cerebral hypoperfusion. I know I've heard her talk about on different podcasts that, that we see in POTS and that doesn't get tested for a lot.
But boy, that sure would be an explanation, right? Like if you don't have the same perfusion in the middle cerebral artery, or at least not the same pulsatility, which probably means it's not the same perfusion in your brain. So if POTS brains at baseline are not getting the same amount of blood flow and, and consequently the same amount of oxygen,
then, of course, we're going to have symptoms like headache. The migraine rate is like 40 or 50 percent, something like that in POTS patients, but then if POTS patients are having true neuropsychiatric [00:13:00] symptoms,
that would make sense. Because if you're not getting enough blood and oxygen to your brain, I mean, look at seizures. This is not the greatest example, but it's a kind of example. I, this was the neurologist would like laugh at me for how clumsy this example is, but we're, we're just gonna, we're just gonna give a broad idea.
So with a seizure, part of your brain is not getting enough blood and oxygen, right? And there's an abnormal electrical impulse happening there. And so if what we actually are seeing in POTS, or at least some POTS patients, because that's another thing, we can't generalize to all POTS patients, right?
Because there's so many different people. That's why we have to try all sorts of different things to find the proper treatments. But if POTS patients are not actually getting the same amount of blood and oxygen to their brain, so [00:14:00] you're almost thinking about it like if they're having a little bit of, it's a small version of a seizure,
without the electrical abnormality, I imagine. But at least the perfusion piece of it is there, which may be one of the reasons that we find that when all else fails, benzodiazepines work for the horrific anxiety symptoms that some POTS patients experience. And I think when we look, so, so whether or not that means that POTS patients are having neuroinflammation, I don't know.
I think we need more research, but I think we can at least look at the perfusion issue there and say, okay, the, the research thus far is really getting narrowed down to where that hypo perfusion is coming from that Dr. Blitshteyn has [00:15:00] talked about in papers and podcasts and interviews.
Jill Brook: So I just want to make sure I clarify. So you are, you are thinking that in POTS patients, basically, the brain is just not getting enough circulation. So of course, it's not gonna work optimally, and that could account for headaches, obviously things like dizziness and lightheadedness maybe some of the brain fog, concentration issues.
What about ADHD? What about, like, I, I think maybe you also implied that maybe lack of circulation could contribute to inflammation?
Tena McLarty: I, I, I think that I'm not going to be shocked if we get there, but I don't think we can say that for certain yet, but I think that, I think that what we are going to see is if people like myself, for instance, and so this is not speaking about all POTS patients. Some POTS patients have no [00:16:00] neuropsychiatric or psychiatric symptoms at all, and I am thrilled for them.
That has not been my personal experience or many other people that I deal with, but, but for the people who don't, that's wonderful. I'm thrilled for you. So maybe you have a problem with stroke volume only, and when you get horizontal, you're able to regulate the blood flow or you know, the wall sits or calf pumps or, or whatever.
And that's why those inpatient exercise programs work for those folks. And I think that's great. But I think we also have to remember a ton of other people, it's not that simple. And like, so let's say my brain for instance, I had ADHD at baseline. I'm also in perimenopause now, which we know causes huge amounts of hormonal changes and cause it can cause [00:17:00] inflammation in the body in general.
And I've had POTS that's been largely untreated for 25 years. So if my brain's been hypo profusing for 25 years, then I've got these other issues. So who knows what my peripheral, what misinformation, basically my peripheral nervous system is sending back to my central nervous system.
There's so many things going on in my body that it would be shocking to me to find out that some of my symptoms were not caused by neuroinflammation, and I would be willing to bet that there will come a time when we'll be able to show that that the hypo perfusion I have had in my brain when I have flares at least, when it's hot, when I'm standing too much those times when I'm really out of shape and my stroke volume's really bad.
And just to remind everyone, stroke volume is the amount of blood that's leaving the heart and going out to the rest of your [00:18:00] body, and so with POTS patients, we see especially it's not getting to the upper body. But in a lot of cases, the vasculature is just not normal in general. So yeah, I think probably neuroinflammation for POTS patients, let's not say all POTS patients because I don't think we'll find it in everybody but I think there are many cases where we are going to see that.
Jill Brook: And let's also mention some of the comorbid conditions that a lot of the patients are going to have. And how does that play into it?
Tena McLarty: Let's talk about that because that's really important. Dr. Weinstock, Dr. Blitshtyn have already published, I think, one of my favorite studies about, it's actually a, like, case vignettes about MCAS patients. And they saw that there was a huge amount of neuropsychiatric symptoms, and most likely for MCAS patients, that [00:19:00] is from neuroinflammation.
And you had interviewed Dr. Janet Settle from Colorado.
It was a fabulous, fabulous episode because she really talked about some of her strategies for dealing with the neuropsychiatric symptoms for MCAS patients, and how much she feels that comes from neuroinflammation and why she uses the drugs that she uses because they can be antihistamines,
they can be anti inflammatory.
Jill Brook: Yeah. Yeah. And I know that a lot of the mast cell specialists really do believe that there's a lot of neuropsychiatric symptoms that go along with mass cell activation syndrome, and they're doing a big study on that right now. And thank you to all the listeners who participated in that survey.
And we are actually writing it up right now and, and, you know, for now we can say nobody should feel alone, [00:20:00] certainly, if they're having that. But I think, I think some neuropsychiatric symptoms are known to be related to neuroinflammation, right? Like, like depression, anxiety, or is that correct? And are there others that we know are connected?
Tena McLarty: Depression, anxiety. I actually agree with Dr. Settle when she says bipolar 2 and bipolar 2 is just sort of a lesser version of bipolar 1. So you don't see a true mania, like a person's not going to tell you they were awake for a week straight and ended up in the hospital. But they are going to tell you about agitation, irritability, inability to sleep, so some pretty and some pretty severe mood swings, emotional ability, ups and downs and, I think probably in the MCAS population, if you are a provider out there and you know [00:21:00] your patient has MCAS, or you strongly suspect it, and they also have a bipolar 2 diagnosis, I, I, I think Dr. Settle has been pretty clear about this that we, well, I think all your guests who deal with MCAS, Dr. Dempsey, they all talk about treating the MCAS first.
And I think that that is truly, while we have to deal with the psychiatric issues, we also have to look at the at the underlying causes. So then if we're talking about other psychiatric syndromes, ADHD is one that comes up a lot, fatigue, and, and that could be, you know, there, because there is overlap with, with the ME CFS population, the chronic fatigue folks, we have to think about those individuals and then the, if you have [00:22:00] ADHD and you have POTS, that you are going to have changes in your ADHD symptoms when you have POTS flares.
But that it can get really complicated depending on the type of POTS that you have, because the way we're gonna deal with somebody with neuroadrenergic POTS and the way, versus someone who's hypovolemic or somebody who's neuropathic. They're really different because of the types of medication that people can tolerate.
And truly the same thing goes for anxiety and depression. I mean, we have to be very flexible in the way that we deal with people who are having different symptoms. And, and, you know, I have to say the same thing to patients. These are complex illnesses, right? This is not a simple thing. And I know it's very, very, I mean, I know from personal experience, how frustrating it is to deal with providers who don't know what you're
talking about. And I [00:23:00] am in some, some cases, I am in a great position where I get some, I guess, respect for being a nurse practitioner. And so I'm listening to a little more carefully, and then I have other situations where there's certain providers who don't like nurse practitioners at all. And so they really don't want to listen to what I have to say. And, you know, so I've been on, I've been on every, and then I had the many years where I was not a healthcare provider and I was trying to get treatment and I was just a teenager and I was having all these problems and no one would listen to me at all. And, and so I understand the, the pain and frustration and rage and sadness and all of it that comes from your providers not listening to you.
And I also think that the providers are in a position where, did you say, Jill, that your primary care gives you six minutes?
Jill Brook: [00:24:00] Yes, and then walks out, even if we're in mid sentence. Ha, ha, ha.
Tena McLarty: Makes them really timely. They're, they're very efficient. But you can't deal with, I think you're, you had guests on last week who were trying to have a model where they have time for their patients and I have to tell you that doing a consult with somebody who has POTS and MCAS or many of the complex forms of dysautonomia, an initial appointment of 60 minutes may not even
cover it. And so it's it's difficult on both sides for providers to be able to figure out how to treat us. And then from our perspective on how to treat the other people and then other psychiatric symptoms, insomnia is huge for women, [00:25:00] because we're dealing with like 80%, with POTS population is women. I know for my nurse midwife, she has women in perimenopause, menopause, and teenagers who have POTS and she has nowhere to send them.
She doesn't know what to do and, and so hormonal changes for women can also trigger symptoms that they didn't have previously. Those can be neuropsychiatric, psychiatric, physical. And then I think that we have to acknowledge the, the reality that is not a psychiatric. It's not a psychiatric disorder.
Chronic illness can make you feel sad and isolated. And that's not a psychiatric illness, but it's something that's still, I am called on to treat and, and how do we learn to [00:26:00] get people to feel not isolated and not sad about something that is sad and isolating.
Jill Brook: Right.
Right. In other words, it's a perfectly logical emotion to feel for your situation.
Tena McLarty: Absolutely, which is what I tell people and you know, the, the, when people have rare diseases, chronic illness, these are major issues. And sometimes the only really advice that I got for beating isolation is getting online and finding other people like you and you know, not everyone is like, as POTS people, they don't necessarily need to get horizontal to feel better, but an online support group can be a great thing in a case like that, you know, if you need to say,
in my case, I can't I can't deal with the heat. And so if anything, one of my local [00:27:00] organizations I'd like to be more involved with seems to always want to schedule things during hot times in one of the hot neighborhoods, and I can't go. It's just not possible. So.
Jill Brook: And then when we were speaking before, you had mentioned some things that could be additional causes of neuropsychiatric symptoms that I had never been aware of and I've never heard anyone talk about before. But for example, you were saying that some of the common drugs used for POTS can have a side effect of some neuropsychiatric symptoms.
Do you want to talk about that?
Tena McLarty: Yes, let's talk about that. This one I feel like is important. So propranolol is one of the biggest beta blockers. For the people who don't have POTS, they're just the drugs that are first line for tachycardia, right? So if your heart's beating too fast and you go see a neurologist, cardiologist, and they [00:28:00] decide you have POTS, they're going to put you on one of these beta blockers.
Propranolol had historically been known to cause depression. So then in 2002, there was a huge meta analysis done and the meta analysis reviewed all these randomized controlled trial and decided that propranolol does not cause depression. This is an urban myth. However, that was in 2002. I've looked at
studies since then and I have to say I'm not convinced one way or another. I have, there is enough evidence, newer evidence, that suggests that it is possible that propranolol can cause depression. Metoprolol unquestionably can cause depression. There's so, so there's two brands, I mean, there's [00:29:00] multiple ways to divide the beta blockers, but basically the ones that cross the blood brain barrier and the ones that don't, let's just say that.
So metoprolol, propranolol, carvedilol, there's several other ones that, more than several, they go into your brain and cross the blood brain barrier. And so, it wouldn't be, I mean, I think the chances of it causing depression is something it's only like 1 to 3%. These are not big numbers, but it's possible. And so, if all of a sudden you, maybe you felt sad and isolated, but you didn't feel depressed, and then your doctor put you diagnosed you with POTS put you on a beta blocker and all of a sudden you're depressed.
That would really give me pause and make me go back and ask for a different beta blocker and I [00:30:00] think any of the beta blockers that do not cross the blood brain barrier, you have a better chance of not having psychiatric side effects. The other question that's been raised in the literature about beta blockers is whether people are just misinterpreting the fatigue that beta blockers cause as depression.
I personally, am pretty clear on what depression feels like and what fatigue feels like. And I have to tell you,
I've been down a long road with this and I have had a lot of symptoms and I am trained. So, so anyway, personally, my personal experience was
propranolol caused some depression, but it right at the time, I need an appointment to [00:31:00] get it changed, that side effect actually stopped, and my tachycardia had gotten worse and my symptoms had gotten worse. And so I found once I had adjusted to it and the symptom went away. And then even when the doctor increased the dose, I didn't have the symptom anymore.
So I mean, that's another possibility, but then let's talk about clonidine. Clonidine not only can cause fatigue, but it has been known to cause mood swings it can cause nervousness, nightmares, irritability, emotional disturbance.
I don't know exactly what they mean by emotional disturbance. This is coming from Lexicon, one of the drugs. I just was, I was curious and I thought I would look at some of this. So that's an an alternate drug that you might be given for [00:32:00] tachycardia control. And then like midodrine to increase your blood pressure.
So we have a whole host of people with POTS who, you know, they, they're presyncopal or syncopal because their blood pressure drops so much when they stand and get tachycardic. And I actually had briefly taken that medication and was felt very anxious. And so I looked it up just to see because also, I know a lot of our listeners have probably taken it or might take it.
And again, anxiety is on the list. And just for the record, MCAS drugs, the H1, H2 blockers that you're probably right out the gate going to get put on if you have MCAS. There are, I think almost all of them have some possible emotional side effects, but the good thing about [00:33:00] all of the H1 and H2 is that there are so many of them. You can get, it's like the beta blockers. There's so many of them that they, if you're having a side effect that seems strange, they can switch you to something else.
Jill Brook: And isn't there, I think, maybe one of the leukotriene inhibitors that comes with the...
Tena McLarty: Singulair. Mm hmm. Singulair. I, I has caused, we know for a fact causes mood disturbances. I think that some of the immunologists who specialize in MCAS actually won't use Singulair anymore for that reason.
Jill Brook: And to be clear, it can, it's not that it necessarily causes it, but it can possibly, right? As a side effect.
Tena McLarty: Which is, and I think to be clear, we should, yeah, like, it cetirizine even, abnormality in thinking, anxiety, confusion, agitation, depersonalization, depression, emotionally, but it goes on and on.[00:34:00]
Jill Brook: I'm glad I didn't know this. Honestly. I'm on a lot of antihistamines right now.
Tena McLarty: Like, no, no, but I, I think that it's important that people know, but again, with like Singulair, I took Singulair for years and I had no mood symptoms with it at
all. But, but some people will, and, and the same thing with cetirizine. I, I have never, I take a different one now, but when I was on it, it didn't cause me this
side effect. Most of these side effects are somewhere between one and 5%. I think the highest percentages you'll see are like beta blockers, clonidine, those ones you'll see fatigue is like 7 percent possibility. You're not even talking about 10 percent of people who will take them. So these are not a high incidence, right?
So please don't just immediately say, Hey, I listened to a podcast and they said [00:35:00] that I'm going to have these side effects. The reason that Jill and I are bringing this up for the audience is just because it is critical that people who are already struggling with so many symptoms and with trying to get, for most people anyway, trying to go, unless you're lucky enough to live in a city that has one of the big centers you can go to immediately.
Otherwise, a lot of people are struggling to find care and you might have providers who just don't know these things. And so they're looking it up, they're doing their best, they're consulting with someone else. And so it's important that you're just aware that these are possibilities. Is it going, are you going to have the side effect?
Probably not. There's not a high chance of it, but it is possible. And so if you have a huge mood change when you start a new medication, right back to the provider, [00:36:00] Hey, I had this mood change. Is it possible, or could it be an interaction with my other drugs, because I know a lot of us, including myself, are on just the unreal amount of medications, right?
And so sometimes it's an interaction issue, and you just need to make a switch.
Jill Brook: Can you talk about lithium and hyper POTS?
Tena McLarty: So lithium is honestly, lithium is a phenomenal drug. But it, it also, there are some people who, lithium gets a bad rap, I guess, basically. Because there are people who have not been adequately monitored and have ended up with serious thyroid issues, serious kidney issues, because they were not being watched carefully enough and their kidneys and their thyroid got damaged. And there are some people [00:37:00] who also feel like they got hit by a truck when they take lithium because it can be very sedating. But that said, there are also people who have massive improvements in their symptoms with lithium. Lithium, honestly, sometimes even at what would be considered a sub therapeutic dose can be used to treat depression, it can be used to treat anxiety, it can be used to treat mood swings, and because hyperadrenergic POTS, one of the possibilities, and again, I think we're probably talking about the, the perfusion in the brain, whether your brain's getting enough blood and oxygen, because think about it, if you stand up and both your heart rate and your blood pressure shoot up through the roof,
do you think probably your perfusion is that [00:38:00] great in that moment? My guess would be no. And so some people with hyperadrenergic POTS can, and, and again, I'll self disclose here, I was one of them and I went through a long rocky road with people trying to put me on the typical antidepressants and, and that are not a good idea for most people with hyperadrenergic POTS. And lithium can be
really good, I mean, it's a mood stabilizer. That's what it's meant to do. And so if you were having mood swings because your epinephrine is shooting through the roof when you wake up in the morning, or it's going sky high in the middle of the night when it's not supposed to be, or it's going you know, your, your blood pressure and your heart rate are so high that you're not perfusing to the, to your brain where you need to be, then lithium may actually be a good solution.
I, I just, my only [00:39:00] caveat there, Jill, would be, make sure that you know all, all of everything you're dealing with. So, so make sure that you know that your thyroid is okay. Make sure you know your kidneys are okay. Make sure that you're getting your blood tested regularly and that you are in, because the other thing is some people feel so sick, they can't make it into the lab to get their blood drawn regularly.
And so it's not going to be a good option for that. Maybe we want to put them on like, lamotrigine might be something else. That we could try them on or, or there's a number of mood stabilizers, honestly, that, that could be a good idea. And, and frankly, with hyperadrenergic POTS, I'm not always convinced benzos are a bad idea.
I, I'm truly not terrified of using them for MCAS or POTS patients or dysautonomia [00:40:00] patients in general, because I feel like if someone comes in and they tell me that they have had problems with addiction in the past, we need to look really carefully at what it was, why it was, because one of the stories that I have heard more than once, is that what people are referring to as addiction was them trying to manage symptoms when they didn't know what was wrong with them.
So my threshold for even benzodiazepine use with with the MCAS and the hyperadrenergic POTS and, and sometimes the neuropathic patient POTS patients, it is pretty low. I mean, I think that the majority of people don't want to be on anything addictive and they're happy to get off of them as soon as they can.
And if I put somebody on an antidepressant, I would have to wean them off the antidepressant. I would, I would, if I had you in a big enough dose of lithium, I [00:41:00] would wean you off the lithium. So it's sort of the same idea with benzodiazepines. I'm not going to just take you off of them cold turkey, but I'm going to taper them down this, the same way I would antidepressant or anything else.
Jill Brook: So in Dr. Weinstock's latest articles coming out, anybody in the audience who participated in his survey will know that it asked about antihistamines, low dose naltrexone and benzodiazepines. And it asked how much it helped with each particular neuropsychiatric symptom. So we're going to have good data for people coming out soon where they can actually go and look for this particular symptom or that particular symptom.
How much did benzo or what percentage of patients said that benzodiazepines helped them? What percentage said antihistamines helped them? What percent said LDN helped them? So that will be maybe helpful too. But before we go on, you said something a bit earlier [00:42:00] that I, that, that just kind of stayed in my mind.
And I imagine it's stayed in a few listeners minds too. And I think you said something about not liking conventional antidepressants for hyper POTS patients. Can I ask why?
Tena McLarty: Yes, please. Let's talk about this. Okay. So not all POTS patients, we're a complicated group, like, I don't know about you, but I have been on different medications, and some things worked amazing, and some things I had an absolutely bizarre reaction to, and I personally went down the path of the the, the SSRI, SNRI, I don't know how many of them that I was tried on.
And I ended up in the emergency [00:43:00] department at one time because of one of them. And I was determined that I was going to try this because if these academic doctors were telling me that this is what I needed, I was going to do it. I must be a people pleaser because boy, if they said this was going to fix the problem, or maybe I was in that much pain. But one thing that we know is that the selective serotonin reuptake inhibitors,
and probably even more so, the selective noradrenergic uptake inhibitors, so they affect serotonin and norepinephrine. I think the name alone probably tells you with the SNRI, why that would not be a good idea for hyper adrenergic POTS. But because there is an issue already [00:44:00] with hyperadrenergic state, if you increase norepinephrine you are putting that person into a greater hyperadenergic state. So in general, what you're going to see is a pretty big increase in heart rate, blood pressure, anxiety, or at least the feeling of anxiety.
It might not be a true anxiety. And it is not a path I would be willing to go down. I mean, I, I potentially would try an SSRI just because it doesn't have the norepinephrine component. So it, it is a better option, but in general, there's not a lot of evidence that, that that class of medication has [00:45:00] been very helpful for hyperadrenergic POTS patients.
And, and then the other types of POTS can go either way. And, and the same thing with tricyclic antidepressants. So Elavil is one we see a lot because people, POTS patients will have pain, right? But, but the, the class, the tricyclic antidepressants, they're serotonergic, but they also affect, or noradrenergic,
so they affect norepinephrine. So again, that instead of alleviating pain, what we can see is that they increase the blood pressure, increase the anxiety, increase the pain. And so I'm hesitant to, to go down that road. And that said, there are still some patients who have done really well with SSRIs and SNRIs.
[00:46:00] And so I, there's a lot of trial and error in this. Be quick to go back to your provider and get help if something is not working. But please also be patient with all of us. Because everybody who is trying to help dysautonomia patients is doing their best, but we are complex, complex patients,
and it's not easy.
Jill Brook: And I know that, you know, rates of things like depression or anxiety or ADHD are high, even in the non POTS, non dysautonomia communities. And so if a dysautonomia patient has those symptoms, it doesn't necessarily come from the dysautonomia or the hypoperfusion or the mast cells or the whatever.
It could also be coming from whatever is causing it in the non [00:47:00] dysautonomia communities. And so that makes it basically extra complex.
Tena McLarty: You nailed it. And then, as soon as I hear you say MCAS, I forget about the fact that sometimes with the MCAS folks, it's the, it's the other ingredients in the drug that are actually causing the problem and not the drug itself.
Jill Brook: Oh, we're actually doing a podcast about excipients soon. I'm glad you said that because yes, this is now a proven thing. And so absolutely it might not even be the active ingredient that's the problem. It might be an inactive ingredient because what we're learning is that it's not actually an accurate name.
A lot of those supposedly inactive ingredients can cause issues, but you might be able to find a different formulation with the same active ingredient that doesn't have whatever the problematic excipient is.
Tena McLarty: And, and I think that any drugs that [00:48:00] are used for ADHD, this is something that I've noticed recently, ADHD drug makers have got more of the hyperallergenic drugs, I assume because of children, than many other like antidepressants, I don't see that. And then something else I've noticed is anything that have a liquid formulation,
you might be able to get it without the problematic ingredient, just because there are fewer ingredients usually in the liquid formulation than in the capsules or tablets.
Jill Brook: Oh, good to know. Okay.
Now if there are patients out there with psychiatric symptoms who feel like they have not yet been adequately managed, do you have any advice for them?
Tena McLarty: I would find somebody that you are comfortable with, whatever kind of [00:49:00] provider they happen to be. And come with all of your pill bottles because they need to know if, if your MCAS, POTS, any other type of dysautonomia, bring all the drugs in, they need to see them. And then just the, the last thing I want to do is ask patients to,
to take on tasks that take extra energy, but, and that's essentially what you have to do to find a provider who's willing to work with you. But you need to know that the person believes what you're talking about is real, that they have time for you, that they have time to look into some of these issues, and I'm not going to pretend that all providers are but, but there are going to be some who, who are, and [00:50:00] so whether it's a word of mouth referral, whether it's someone you found online, whether you just look through a website and have a good feeling about them, find somebody.
And talk to them about everything, all of the, the tests that it took you to get there, all of the medications that you're taking. And if the first one isn't the right one, go to another one. Just you don't have to settle for the first person. There are just so many providers out there. If you are in a remote area, get a consult and then find a provider who's willing to take and who is willing to take consult advice from somebody who knows a little more about the topic than they do. But whatever you do it, it, gosh, Jill, I hate saying this to, to our community. Have more [00:51:00] energy. It's like, it's, it's like cruelty.
I feel like people are barely making it when, when they're dealing with the chronic illnesses that we're talking about. And so to tell somebody like, keep looking, keep looking, keep looking. But I have to say that is my best advice because you don't want to deal with somebody who doesn't believe you or, or isn't interested in looking for the information or isn't interested in even running a drug check to see if the symptoms could be side effects of your medication.
So unfortunately, that is my suggestion. It's going to take some more energy and I'm sorry to ask that of you, but I want you to get care.
Jill Brook: But it is worth it to find that person. So, so kissing a lot of frogs, hoping, hoping one turns into that
proverbial prince. So where can people [00:52:00] find out more information about you online and your practice and your blog and all this good stuff?
Tena McLarty: I have, let's see, where am I? I'm on Psychology Today. I have a website called POTS NPT. I think there's dashes. It's like POTS - NP - T dot com. T for Tena. And then I have an Instagram and I have a TikTok and I have no real agenda. I talk about whatever comes into my brain about POTS, women's health, dysautonomia.
Sometimes it's just me telling you about my headache. But I can't, there is not a rhyme or reason to my social media, but if there's anything that the listeners are actually interested in learning about, just send me a message and I [00:53:00] will give you the information that I have. Look up information if I don't have it. See what I can find.
I am passionate about helping our community. I feel like there are so many of us and so many of us are going without really good information, really good treatment for so long. It's almost like it's unusual if somebody gets diagnosed and treated well, right away.
And so I, I will somehow find the time and the energy to get the information to you. If you're interested in knowing it, reach out to me. I'm happy to do a little reel or, or whatever about the things that people are interested in learning about.
Jill Brook: Oh, that's fantastic and so generous. Tena, thank you so much for all this wonderful information today. Thank you for making your [00:54:00] unpleasant journey mean something to improve the lives for everybody who comes after you. And and just thanks a million. And we'll look forward to following you on your blog and Instagram.
Tena McLarty: Thank you, Jill. It's been a real pleasure. I'm so excited. Thank you so much.
Jill Brook: Okay, listeners, that's all for today. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone and please join us again soon.
