Dr. Ayla Wolf  00:00

In the hyper adrenergic pots, what you typically see is that the heart rate goes up and blood pressure goes up too when you're doing the tilt testing. Welcome to Life after impact the concussion recovery Podcast. I'm Dr Ayla Wolf, and I will be hosting today's episode where we help you navigate the often confusing, frustrating and overwhelming journey of concussion and brain injury recovery. This podcast is your go to resource for actionable information, whether you're dealing with a recent concussion, struggling with post concussion syndrome, or just feeling stuck in your healing process. In each episode, we dive deep into the symptoms, testing treatments and neurological insights that can help you move forward with clarity and confidence. We bring you leading experts in the world of brain health, functional neurology and rehabilitation to share their wisdom and strategies. So if you're feeling lost, hopeless or like no one understands what you're going through, know that you are not alone. This podcast can be your guide and partner in recovery, helping you build a better life after impact. All right, welcome to life after impact, the concussion recovery Podcast. I'm Dr Ayla Wolf, and I am here with the birthday girl, Sophia Bowens, hi, Sophia.

 

Sophia Bouwens  01:19

Hello. Dr Wolf, it's so exciting to be here.

 

Dr. Ayla Wolf  01:23

Are you having a great birthday weekend?

 

Sophia Bouwens  01:25

I've had a great birthday weekend. I'm officially in my late 30s. Like something about that feels like very adults to me,

 

Dr. Ayla Wolf  01:35

but you're still young at heart.

 

Sophia Bouwens  01:37

I am. I don't feel old. My mom always told me, life begins when you're 40. And my mom told me that too, and I didn't believe her, but let me tell you, it does so waiting for life to begin, but it's been a really good birthday, reconnecting with a lot of old friends and just, yeah, living life. I'm excited to be here with you, doing this kind of stuff, and I think our topic today is just really a good one. So do you want to describe we're going to be talking about today?

 

Dr. Ayla Wolf  02:05

Yeah, I thought it would be a good idea to dive into some of the nuances of pots, Postural Orthostatic Tachycardia Syndrome, because I would say that more frequently, I'm having women come into my clinic who tell me that they are concerned that they have pots. And in some cases, when we go through a lot of autonomic testing and we look at all the data, it sure looks like they they do. And in other cases, I've had people come in and say, I think I have pots, and I've run them through all my tests, and I say there's absolutely zero sign of you having pots, but that's not to say that we need to discount their symptoms. You know, in one particular case, my concern was that she maybe actually had cervical instability that was driving a lot of her autonomic symptoms. And so after going through all of the testing, I felt pretty confident in saying nothing that I see here looks like pots. However, I want to refer you out for a DMX, a digital motion X ray to get some better data on what's going on with your neck, because I'm concerned that you might have some cervical instability going on.

 

Sophia Bouwens  03:18

Yes, and the upper cervical and the autonomic system are so intimately related, so that's huge. POTS can be such a tricky thing to diagnose or to even start to tease out, and I love that you have ways to assess whether or not it's likely to get to have, like the pots or some other type of autonomic dysfunction.

 

Dr. Ayla Wolf  03:40

Yeah. Yeah. So I have a big chapter in my book on dysautonomia and autonomic dysfunction, and, you know, I start out that chapter with a very long list of possible symptoms. And so I think for some people, that might be eye opening, because it is able to connect a lot of the dots for why they might be having a lot of what we might call non specific symptoms that don't necessarily point to one easy, simple diagnosis,

 

Sophia Bouwens  04:08

right? So I'm sorry to interrupt you. No, go ahead. I was just this is, this is such an interesting component of this because I haven't had a patient recently. I think I may have mentioned this patient before, but their first original referral was for peripheral neuropathy post viral infection. So they got or no post Guillain Barre. They got Guillain Barre, and then they had this neuropathy that wouldn't go away after this acute episode of it. And so I tried, started treating them for this neuropathy, and just we kept, like teasing in, different symptoms would kind of come out. Some things would get better, some things would get worse, or things would exacerbate. It just wasn't going the way that I thought it would go. So we were teasing in and I really. Started honing in. I'm like, actually, there's autonomic dysfunction here that's disrupting circulation to the extremities, causing neuropathy. And eventually this heart rate component started coming up, where they start first we're seeing anxiety, and then their anxiety would get better. And it wasn't until, like, far too long. And I realized, actually, I think you have pots. I think that there's, there's something like, it was this aha moment. So I reached out to the referring provider and said, like, Could you put a referral in for a POTS assessment? And I talked to some of the members on our vestibular team, and they were like, Oh, well, we do have a tilt table here, but you need to go to a cardiologist to get assessor pods like a specific neurologist, because they have to use, like, a 12 lead EKG to assess for this. And I was, like, kind of stumped by that, because I just thought, no, yes, okay, maybe there's, like, this one valid test, but there's other ways we could assess this on the ground and make an impact before they get in to see a cardiologist or a neurologist for this test that, like we could do here. Yeah, I think

 

Dr. Ayla Wolf  06:10

what you're what you're getting into is kind of this murky area of who in terms of scope of practice, and so I think that perhaps the vestibular therapist was saying, well, we might be able to work with somebody that has a diagnosis of POTS, but because of our scope of practice, we need to actually get somebody to a cardiologist, so the cardiologist can give them the actual diagnosis, and then they are then sent to us with The diagnosis, and then we can work with them.

 

Sophia Bouwens  06:42

Oh, and so I inefficiencies of medicine. Isn't that true?

 

Dr. Ayla Wolf  06:47

Well, it is very inefficient. If those cardiologists have a two to six month waiting list for sure

 

Sophia Bouwens  06:53

this patient's suffering. So I wonder you talk about some like, different considerations for diagnosing. You have these assessments, yeah, so the audience, what that is, yeah.

 

Dr. Ayla Wolf  07:06

I mean, for me, in my practice, I'm all about observing, right? I'm all about observation, collecting data. And then if I collect enough data, and I say, you know, hey, I think you really do need to maybe go and have a full autonomic reflex testing panel done. You know, I'll refer out for that, but with the knowledge that there's typically a six month waiting list at least where we live, because there's only two major clinics that do that. But absolutely, I wouldn't wait to collect the data on what someone's autonomic nervous system is doing, because that's super easy data to collect. I mean, you know, having a heart rate monitor, a blood pressure cuff, a tilt table, these things are pretty basic and so, and they're usually found in a lot of a lot of clinics,

 

Sophia Bouwens  07:53

yeah, and maybe we wouldn't be the ones to diagnose POTS like the classical POTS, but we could work with someone with these pots like symptoms and make improvements if we're understanding what's really going on,

 

Dr. Ayla Wolf  08:06

yeah. And so there's, I think that it's important to recognize there's a difference between postural orthostatic tachycardia and Postural Orthostatic Tachycardia Syndrome, right? So as soon as you add syndrome to the end of that, you've got a legit diagnosis. But certainly, there's nothing wrong with saying, Hey, we are observing Postural Orthostatic Tachycardia in this moment. Let's keep monitoring it, and then let's make the appropriate referrals, right? All

 

Sophia Bouwens  08:35

right, yes. So what kind of assessments might you look at? Or do you talk about this in your book. How might you start to assess for this? You shared a little bit about this exploration. For actually, you don't have, like, pots, but you have, maybe cervical instability. How would what are some of the things you digitize to tease that out.

 

Dr. Ayla Wolf  08:55

For starters, there isn't an age difference. So when we look at, say, like younger teenagers, age 12 to 19, the diagnostic criteria for POTS is actually seeing a heart rate increase of greater than 40 beats a minute on a tilt table test, whereas for adults, it's 30. And so that's important too, is that if you're working with a younger individual, they actually might have, you know, they have different criteria for diagnosing pots. So, so that's one thing I want to mention. The other thing is, is going back to this idea of as a syndrome, the symptoms, if you're looking at really strict criteria for pots, that there's even, you know, I read all these research papers where they're saying that the criteria for pots has kind of gotten like broader and broader and broader, and so then all of a sudden, more and more people can be included in it. And there's POTS is rather a newer diagnosis, and I think the criteria is still, in a sense, evolving, as we find that different things are causing it. And. And there's different manifestations of it. So the very first established definition was in 1982 so that's not that long ago, no. And so when we think about it as a syndrome, some of the strictest criteria states that it actually needs to be persistent or present for six months or more. And so that's one thing. The other thing is that this, you know, going back to that same idea, is that this increase in heart rate for adults of greater than 30 beats per minute when you go from, you know, laying down to standing or on a tilt table, that that's reproducible. It's not just happening once. And and I've certainly had, you know, cases where patients come in, you tilt them up, you see their heart rate immediately spike, and then the second you bring them back down, the heart rate goes right back down pretty quickly. And then you bring them back up, and you see it spike again. And it is very reproducible. So that's one thing to kind of keep in mind. The other is that this elevated heart rate does occur within three to 10 minutes. So that's the other piece where I have seen people stand up and their heart rate doesn't do anything for say, like the first five or six minutes, then all of a sudden, you hit a seven minute mark, and you see it skyrocket. And so that 10 minute window is important,

 

Sophia Bouwens  11:25

that time window that you mentioned, like, for example, that patient who didn't have the heart rates like for seven minutes is interesting, because I don't think if you're just living your daily life, you would connect that when I stand up, I get a rush in heart rate if it's happening seven minutes after you stand up, you know, you like, go about your life, and then all of a sudden you feel like, Oh, my heart rate is like racing. You get this sense of anxiety if it's seven or 10 minutes or eight minutes after you stood up. I don't know that I would connect that. Do you see patients that have this like aha moment,

 

Dr. Ayla Wolf  12:03

what I've noticed is that some people are very aware of their heart rate and their tachycardia, and other people are not. So there's definitely a variability in terms of someone's own perception of what their heart rate is doing. Some of my patients, when I'm watching their heart rate, they don't necessarily feel like it's racing, even when it is, and then other people are almost hyper aware. So I'd say there's definitely a broad range of what the patient is actually experiencing in those moments.

 

Sophia Bouwens  12:36

Yeah, I can see that, and that might be another reason why it's hard to pin down this diagnosis, which can be so crucial.

 

Dr. Ayla Wolf  12:44

I think it comes back to the idea of interoception, and this idea that we have this part of the brain called the insular cortex, which is where we have our interoception, our ability to be aware of what's happening internally. And when I was writing my book, I did come across a very interesting research paper that I referenced that talked about this idea that some people with dysautonomia, they can actually see some dysfunction within these regions of the brain that are involved in interoception, and that can lead to a lot of poor feedback between the brain and the body, where maybe people don't recognize when they're hungry, or maybe people don't recognize when they're cold, or maybe people aren't getting proper signals from their body to say that something is off. And so it's like this dysfunctional feedback loop between the brain and the body.

 

Sophia Bouwens  13:39

I see that all the time, and you feel disconnected from your body, is one of the ways people will say it to me, like, I just don't feel like I'm like, fully in there, or I want to be more connected to my body. Yeah, it's, it's feeling like you're not fully, like inhabiting or you don't know when you're hungry or you're tired or thirsty, you can't tell if you're cold. Yeah, it's a it's interesting that you see that, do you see that connect and cor correlate with an autonomic dysfunction?

 

Dr. Ayla Wolf  14:07

Again, I think it can go both ways. In some cases, people aren't really paying attention to the cues their body is giving them, and that can be problematic. And then you can have the exact opposite, where people are too in tune, and every single little sensation is a cause for anxiety. And there's a bit of a, almost a hyper focus on every single little ache and pain and Twitch and twinge. And so I absolutely, yeah, it's it can go both ways. Really,

 

Sophia Bouwens  14:37

you see both of them, but these testing opportunities, that's why I think they're so helpful. Because patients, we all know they're not super reliable in their own just reporting, because it can change so much, or what they're even aware of capturing, yeah,

 

Dr. Ayla Wolf  14:52

and I or seeing exactly. And I think another good example of that is when people have what I call increase. Heartbeat awareness, where they feel like their heart is pounding. And what I've come to really recognize is that people's heart can be pounding, but it doesn't necessarily mean that it's pounding fast, although many times when people feel like their heart is pounding, they think that it actually is an elevated heart rate, and sometimes it is, but sometimes it isn't. And so again, we have to really get the data to say, what is your heart rate doing in different positions? You know, what is your heart rate doing when you're laying down? What is your heart rate doing when you're standing? What is it doing when you're sitting, and what is it doing when you're exercising, and what is it doing when you stop exercising? Like all of that data is super important to understand. Yes, you may be feeling a pounding heart, but is it actually an increased heart rate as well?

 

Sophia Bouwens  15:50

So if you don't have a cardiologist to refer to or to work with in a timely manner, what are some of the ways like, how do you start assessing for POTS in your office?

 

Dr. Ayla Wolf  16:00

Really basic by having people first, I just have them sit down, right and look at what is your blood pressure, your heart rate, your SPO2, numbers when you're sitting. And some people, you know, they have white coat syndrome, right? And they have high blood pressure when they're sitting. And so if that's the case. It's also important for people to monitor their heart rate at home and to sit for five minutes without talking to anybody, and then take their blood pressure like, you know, multiple times, just to see is my blood pressure consistently way lower at home versus if I'm in the doctor's office. So sometimes you gotta, yeah, sometimes you have to troubleshoot the white coat syndrome. But then I have people lay down and again, not talk. Lots of people like to talk. And oftentimes they're, they're telling you about all the stressful things going on in their life, and that's gonna, you know, affect the data. So the key is to not talk. And so having people laying down, again, looking at blood pressure, heart rate, oxygen and symptoms, and then when you tilt them up and have them at a tilt for 10 minutes, you're monitoring everything, again, blood pressure, heart rate, symptoms, and you're documenting all that. And so through that, you can start to gather data on what their heart rate is doing in relationship to whether they're laying down versus whether they are upright, and then what happens when they've been upright for a whole 10 minutes? The other thing about POTS is that part of the pots diagnosis is that it isn't occurring in the presence of low blood pressure. So if you see that somebody has orthostatic hypotension, where their blood pressure is dropping, that part of the pots diagnosis is that you're actually seeing the tachycardia in the presence of normal to high blood pressure.

 

Sophia Bouwens  17:54

 Okay, so that's an interesting piece in your book. You talk about additional diagnostic considerations, maybe, like this, high blood pressure, low blood pressure, yeah. When you're assessing for POTS, could you talk about those?

 

Dr. Ayla Wolf  18:09

Yeah. So to go through kind of a few of these other nuances of the diagnosis typically, like, what you should see is that the symptoms that people get when they are upright, whether it is dizziness, nausea, lightheadedness, increased pain, those symptoms typically get better pretty quickly when you bring them back down. So that's kind of one piece. The other piece is that if somebody is fainting, that alone is not enough to say that you have a POTS diagnosis, right? You got to collect the actual data on the heart rate. So so that's one thing, and then you also need to exclude other causes, like I've had a patient who was prescribed a certain medication, and as soon as she went on the medication, she developed basically postural orthostatic tachycardia. And so you have to kind of understand, too, that you don't want to give someone a POTS diagnosis if you haven't ruled out other causes, like whether it's a medication or something else. So secondary causes of Orthostatic Tachycardia need to be excluded. So those are some of the kind of nuanced considerations. But then, if somebody does have a pretty clear Postural Orthostatic Tachycardia presentation, it's been there for months, you know, and it's repeatable, then we have to also understand that there's different categories of pots and that Yes,

 

Sophia Bouwens  19:39

next, yeah, please talk about this.

 

Dr. Ayla Wolf  19:42

people can have multiple categories all at the same time. So I'm going to talk about the categories as separate things, but some people have, they can have more than one, yeah, they can fall into more than one criteria.

 

Sophia Bouwens  19:54

Welcome to neurology. Not to make it more confusing, there's never a clear cut. But. There are some considerations.

 

Dr. Ayla Wolf  20:01

 Biology is messy. There's no black and white.

 

Sophia Bouwens  20:06

No, we wish there was, but it's nice to understand some parameters so we can see a spectrum. Let's talk about them that you have. You break it down into multiple subtypes.

 

Dr. Ayla Wolf  20:17

So we have the hyper adrenergic pots, which is actually the most common subtype of pots. However, I was listening to a different podcast, and there was a medical doctor actually talking about he was expressing frustration that people kind of ignore this hyper adrenergic component. So I thought that was kind of interesting, that even with this being the most common subtype, that it's still maybe not quite acknowledged to the degree that it should be, but in this subtype, there's actually too much norepinephrine in the system, and that could be because there's just excessive production of it, or there's an excessive amount of release of this neurotransmitter, or there's a failure of proper reuptake so that there's just more of it in the system.

 

Sophia Bouwens  21:07

Can you talk about what norepinephrine is from people who might not understand that neurotransmitter?

 

Dr. Ayla Wolf  21:16

It's a neurotransmitter produced in the lower brain stem, and it's highly involved in being alert, and so, you know, when we talk about people that maybe feel super kind of dopey or drugged up or tired, some people don't produce enough norepinephrine, and they can just feel very kind of sleepy and out of it. But when there's too much of it, it's almost like you could say people maybe feel a little bit more anxious and kind of hyper, hyper alert,

 

Sophia Bouwens  21:43

kind of wired right, like I can't rest, or I can't fall asleep. Do people with a high level of norepinephrine have difficulty sleeping,

 

Dr. Ayla Wolf  21:52

potentially, and in this population, I mean, I would say that with dysautonomia in general, people's sleep cycles are often disrupted as part of it, because the autonomic nervous system controls our circadian rhythms and a lot of our sleep rhythms,

 

Sophia Bouwens  22:09

all this digestive and sleep and reproductive so if you have this hyper adrenergic type, which is the most common, you have too much norepinephrine in your system. Is that what you're saying,

 

Dr. Ayla Wolf  22:20

Yeah, and that can actually be measured in plasma levels of norepinephrine. So this is something that can be tested to say, Is there too much? And we can actually measure that. So that's part of it. But then the other part is that that leads to orthostatic hypertension, and so in the hyper adrenergic pots, what you typically see is that the heart rate goes up and blood pressure goes up too when you're doing the tilt testing. And so that's important to recognize, because there are some drugs, like the antidepressants the Cymbalta, Effexor, which are norepinephrine, serotonin reuptake inhibitors that you wouldn't want to place somebody on, because if they already have too much norepinephrine, you certainly don't want to give them a drug that actually supports the production of it and the promotion of it.

 

Sophia Bouwens  23:12

Yes, that's huge, but that's maybe another reason why this physician was expressing that there's not enough people who really pay attention to this subtype, even though it's the most common, there's so many considerations a care team would have to have, like you just mentioned, with medications to treat other components that might drive this.

 

Dr. Ayla Wolf  23:33

A lot of people that suffer from migraines as part of their picture of having hyper adrenergic pots, those two things seem to be linked. And so when you do have people with dysautonomia, they often have either headaches or increased frequency of migraines as part of the clinical picture. And so that seems to be more common with the hyper adrenergic pots, and that might also indicate that there's a hormonal imbalance as part of this clinical picture, because many people with migraines seem to have imbalances between, you know, too much estrogen, or not enough progesterone, or these kind of estrogen progesterone imbalances. And that's where it also would indicate that it might be good to really look at someone's hormones and do some hormone testing to see what their estrogen levels are at different times throughout the cycle, to understand if that is, you know, part of this picture too. I think it's like 70% of pots cases is in females between the age of, say, like 15 and 45 it's like, well, you know what else is is happening in women between age 15 and 45 Well, their hormones are supposed to be cycling in a very orchestrated manner, and so maybe we need to do a whole lot more research on the hormonal component and how much that might be actually contributing to some of these pots type presentations.

 

Sophia Bouwens  24:56

It's not so simple. Again, we're getting into the messiness of biology. Yeah, I know. So we have the hyper adrenergic pots, but are there other types?

 

Dr. Ayla Wolf  25:06

The next one is the hypovolemic pots, and this exists when we have this dysfunction within the renin angiotensin aldosterone system, which regulates fluid balance and water metabolism in the body. So what this creates is a low plasma volume, and you can actually measure that by doing a 24 hour urine test. And so people basically have to pee and do a big container and collect their urine for 24 hours. And then you can actually look at the levels of sodium and potassium and creatinine, and you can see that there is some dysfunction within these levels, and basically a lot of these hypovolemic POTS patients, they feel very light headed, very dizzy, very weak when they're standing because of this, you know, decreased plasma volume with this one. This is where a lot of people do find some relief in doing the things that help to retain water, you know, like salt. A lot of people will find that by increasing their salt intake, or doing salt tablets, or do they doing electrolytes to try to help support the fluid retention and kind of boost that plasma volume, that that can be helpful, as well as compression garments. And so this is, this is the type of pots where, like, those types of therapies can can be helpful management strategies,

 

Sophia Bouwens  26:28

yeah. And is there another one? Yes.

 

Dr. Ayla Wolf  26:32

So then we have pots plus mast cell activation. And so mast cell activation syndrome, or is essentially a situation where people have increased mast cell activity. Mast cells release histamine. Histamine causes vasodilation. And so this is where many people will break out into hives, or they'll have the like splotchy red skin. A lot of times they have these symptoms come on after they eat meals. And so there's certain kind of triggers for this as well.

 

Sophia Bouwens  27:06

Is that more the immune system component? When you think of mast cell activation, they're usually, yeah, in response to some immune function, right?

 

Dr. Ayla Wolf  27:16

Essentially, their mast cells are overactive, and so they have just this increased response that is causing a lot of these symptoms. A lot of these people will have shortness of breath, they'll have increased headaches as well excessive urination, and a lot of them have a lot of nausea and even vomiting. And so again, this can be measured. You can actually measure methyl histamine levels in the urine. The other reason why on like, why catching the mast cell activation? Component of it is that most people with pots are actually given beta blockers to try to lower their heart rate. That's like the most commonly prescribed medication when somebody has postural orthostatic tachycardia, but when they have mast cell activation, beta blockers are actually kind of cautioned against. So this is another reason why understanding the different kind of subtypes of pots is so important is because they can actually impact, you know, treatment guidelines,

 

Sophia Bouwens  28:19

absolutely and would you approach them with treatment differently?

 

Dr. Ayla Wolf  28:23

From, you know, more of a holistic perspective, I pay a lot of attention to liver function. When people have mast cell activation syndrome, there's oftentimes a liver component that needs to be supported. And there's, you know, herbal formulas that work really, really well to help prevent the production of histamine and clear out excess histamine. So there's, I think in this particular case, there's often a lot of you know gut issues and kind of gut liver dysfunction that needs to be addressed.

 

Sophia Bouwens  28:55

And someone with a hypovolemic pots, would you take a different approach?

 

Dr. Ayla Wolf  29:01

That is where you also need to well. So I guess with all of the POTS presentations, you also want to pay attention to the concept of, where am I in space, you have to ask that question of, okay, why am I having symptoms when I go from laying down to standing? And there's different systems in the like, there's different systems. We have redundancies within our our nervous system, but one of the systems is this baroreceptor system. So, you know, we have these receptors in the carotid arch and in the in the neck, in the arteries in the neck, and so they're supposed to pick up. The fact that when you go to stand up, we need to have a slight increase in heart rate. We need to have a slight increase in blood pressure, so that instead of gravity, taking our blood and bringing it down towards the ground, that our system is over, overcoming that by having blood flow enough of it get to the brain so that we don't pass out. Right? Yeah. Yeah. And so part of that is this idea of these baroreceptors saying, Okay, we've just changed, you know, we've just changed position, and so now we need to respond by increasing blood pressure a little bit. And so the baroreceptors are, you know, picking up on changes within the system, changes within the pressure, and then signaling to the brain stem. And then the brain stem is responding and then signaling to the heart. And so this is this very finely tuned orchestra that if it's not happening appropriately, and people lose what we call baroreceptor sensitivity, that that can be part of the problem.

 

Sophia Bouwens  30:34

Can we just take a second to like, just to appreciate how incredible our bodies are that they can, like, adjust to gravity, how our blood is flowing, so that we feel normal, and we are so quick we don't even know what's happening, because our systems, when they're healthy, just do this so naturally, and then these little disruptions, whether it's in the liver or in the brain stem, or if it's in our adrenals, like they can really affect the sensitivities of the risk receptors, or the abilities for these loops of information to respond appropriately to the changes in our position and gravity. I mean, that's just, I think that

 

Dr. Ayla Wolf  31:21

I know. I mean, when things are working well, we don't appreciate it, right? We don't really appreciate what our system is supposed to do until it stops doing it,

 

Sophia Bouwens  31:30

and then it doesn't do it right. And we're like, whoa. Like, oh my goodness, this is nuts. It's so disorienting. And then we have to have the ability as providers to tease out which part of this really intricate system is the disruption happening in this miscalibration of the system that might be driving all these other symptoms. Can be coming from cervical proprioception. It can be coming from adrenal function. It can be coming from liver function. It can be coming from a head injury or autonomic function. It can be like so many different things can hormonal changes, like there's so many different things that we have to be able to see, which is why I think it's really helpful to have a specialist who understands these things very cohesively and is teasing out maybe these subtypes, or what the symptoms are that are really presenting?

 

Dr. Ayla Wolf  32:25

Yeah. And the other thing, well, I guess a couple things that jump into my mind. One, I just want to go back real quick in the topic of the baroreceptors. In that you can actually test the baroreceptor sensitivity by doing a valsalva maneuver, and so by bearing down, you're changing your inter thoracic pressure, which you know, increases blood pressure. And so by doing a valsalva maneuver and looking at blood pressure and heart rate responses, you know, a clinician can actually see what the body is doing in response to this increased pressure. And then when you let it off, what is the reaction to that? And so by looking at these changes in blood pressure and heart rate when somebody is doing a valsalva maneuver and then releases, that gives us, you know, some data to say, are the baroreceptors interpreting that information correctly? So I just wanted to throw out that there are different ways to actually test for baroreceptor sensitivity, which is great, you know, even if we don't have a 12 lead EKG or even if we don't have continuous blood pressure cuffs monitoring, we can still collect data on a tilt table test and on a baroreceptor, you know, sensitivity test And on a five minute sustained hand grip test and pupillary light reflexes so at the bedside, functionally, we can still assess the autonomic nervous system to, like I said earlier, observe what's happening with the patient's autonomic system, and then start to look at where is this dysfunction. Where are other areas of dysfunction that might be contributing to these errors in the system, and how do we restore more integrity to the system? And so part of that is doing additional troubleshooting. For example, I have seen a lot of patients that have mold exposure, have a lot of tachycardia and they have a lot of the kind of pounding heart sensations as part of, like a mold exposure type symptomatology. So sometimes you've got to go really deep and say, Are there, you know, environmental issues here? Is there, like a Lyme disease as part of this diagnosis? Is there a virus? Is there an autoimmune component? So there's a lot of troubleshooting that has to happen, and then also paying attention to, like the hormones, like we talked about. So there's, there's just a lot of diagnostics that have to go into it to really try to figure out, you know, the big picture of everything, and not just looking at pots as, oh, this is a situation of rapid heart. Rate, like there's so much more to it than just that one component. So so that's kind of big picture, and I think that that's where a lot of people get lost in the system, is when they just go down the route of being given medications to artificially control the autonomic nervous system. So like one of my patients that was diagnosed with pots, if she was laying on the floor, her heart rate would go down to 50. When she stood up, her heart rate would jump up to 150 so, I mean how? I mean so she was so symptomatic. I remember when we did our initial 15 minute kind of consultation over telemedicine, just because she, you know, so she could find out more about the work that I do. You know, her video popped up on the telemedicine and she was literally just like, spread eagle on the floor, like, she's like, I can't even sit up for this conversation. Yeah. And so, you know, if you can imagine your heart rate going, you know, changing by 100 beats a minute when you go from laying down to standing. That's crazy, absolutely. I mean, that's yeah. And so you know, she was given one medication to try to lower her heart rate, but she was given another medication to increase her blood pressure. But if you're taking a medication that lowers your heart rate, but your heart rate is 50 when you're laying down, well, it's like no wonder she felt worse on that medication, because the, you know, our autonomic nervous system is meant to respond in the moment, and when we artificially, you know, try to control it with pharmaceuticals, it doesn't account for a situation where, yes, her heart rate might be 150 when she's standing, but if She's on a heart rate lowering medication, and then she goes to lay down, and then her heart rate's now 50, you know it's just you're taking away her body's own ability to try to figure that out,

 

Sophia Bouwens  36:51

for sure, and that's an important part of rehabilitation. Recovery is like, how do we actually help the system respond better? And like, we get its own integrity. There's so many nuances in care and difficulties and challenges for patients who might get misdiagnosed or miscategorized, or the providers might not fully understand what's going on, so put them on the wrong medication. I wonder what kind of hope we can give patients who are struggling with these things to like, feel like, okay, if I do want to find someone for help. And like, assessing this, like, what do I look for, and what kind of provider do I need?

 

Dr. Ayla Wolf  37:27

I think having a provider who's willing to collect a lot of data and do a lot of these functional tests, and then to also look at the big picture of, you know, is there a viral infection? Is there an autoimmune disease that hasn't been discovered yet? Is there a mold exposure? Is there a concussion? Is there long COVID? Is there mitochondrial dysfunction? Is there a baroreceptor sensitivity issue? Is there a vestibular disorder that's driving this, they got to find a practitioner who understands all these different potential factors and is willing to look at all of that and start to rule certain things out or rule certain things in, and then continue to go down these rabbit holes of, you know, doing the investigative lab work and the diagnostics and the testing, And then also, at the end of the day, you know, we keep coming back to the studies that show that exercise is the one of the best ways of helping the autonomic nervous system, yes, and you have to figure out how to do that in a way that is obviously safe for the patient, especially if they're dizzy and nauseous, and you know, understanding that it's not okay, let's just immediately try to get you on a treadmill and walking 15 minutes a day. It's like no, like some people, that's not possible, right?

 

Sophia Bouwens  38:52

Working with specialized providers who understand how to taper your exercise dose and your exercise engagement to help your system is huge. That's

 

Dr. Ayla Wolf  39:03

really important. And I think that's where, like a recumbent bike can be really helpful, because people can actually be sitting down and still getting some blood pumping and doing exercise, but they're seated whereas I think in a lot of cases, treadmills are not necessarily the immediate starting point, yes, depending on again, just how symptomatic they are, but

 

Sophia Bouwens  39:29

I think we understand that everyone has to have, like, their own prescription based on your symptoms and other things, and your book does a really nice job of helping people understand that. And now our audience has some resources and maybe some better understanding of like, why and in what ways these complexities can make a really big difference in how you approach treatment and the outcomes you would see. I mean,

 

Dr. Ayla Wolf  39:53

a lot of people will ask me, they're like, do you think I should go and get tested, or do you think I should go see a cardiologist? And my answer. Always Yes, like, go get as much testing and as much diagnostic workup as you possibly can, and then you get to get the information the right diagnosis, and then figure out how to move forward from there. So it's, you know, I'm not, I'm never against going to see specialists and going to do more testing. You know, I'm always highly recommending that people do those things, and then, like I said, they get to get the information, get the right diagnosis, and then figure out strategies for how do I want to approach this from here?

 

Sophia Bouwens  40:33

Yeah, and that's the thing is, like, sometimes, and I'm all for the testing, but there's a frustration, like, Okay, once you get the test, oftentimes they just say, okay, like, this is what

 

Dr. Ayla Wolf  40:43

you have. And that's because a lot of doctors will actually tell their patients there's no cure for this. And I think that what they mean by that is there's no single pharmaceutical drug you can give somebody with dysautonomia to then just fix their autonomic nervous system.

 

Sophia Bouwens  41:01

Yep. I think your work, Ayla, has been amazing in this I'm super excited to share this with the public and get this information on this really complex condition out there to start to hopefully make a good impact.

 

Dr. Ayla Wolf  41:17

Well, thank you so much. I mean, this is a really difficult and complex topic, and even for the people who understand it really well, it doesn't always mean that recovery is necessarily quick, fast or easy. And so I think it's also one of those things where, you know, helping people to understand expectations and that they a lot of times it's baby steps, and, you know, really just trying to make sure that we're heading in the right direction. So it requires a lot of patience on the part of both the patient and the provider to really work through this and to come up with treatment plans that are helpful. And so again, it's, it's not a simple topic, and it's not a simple treatment plan. And I think that, you know, part of the difficulty in writing this chapter in my book is that I couldn't just give people, you know, here is the treatment, because the truth is, is everybody needs something different. But I hope that at least this gives people some things to think about and maybe some avenues to explore. So thanks for diving into this with me. Yes, for our listeners, if there's any topics you'd like us to cover, please send us an email at lifeafter impact@gmail.com or you can click the send us a text link in the show notes. My new book, the concussion breakthrough discover the missing pieces to recovery is also now available on Amazon, and you can link to that through the show notes or through our website at life after impact@gmail.com, thanks for listening. We'll see you next time. Medical disclaimer, this video or podcast is for general informational purposes only, and does not constitute the practice of medicine or other professional health care services, including the giving of medical advice. No doctor patient relationship is formed. The use of this information and materials included is at the user's own risk. The content of this video or podcast is not intended to be a substitute for medical advice diagnosis or treatment, and consumers of this information should seek the advice of a medical professional for any and all health related issues. A link to our full medical disclaimer is available in the notes you I'm.