Beyond Tachycardia: The Misunderstood World of POTS | E25

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 .

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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 .

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 what we're going to be talking about today ?

looks like 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 .

point to one easy , simple diagnosis .

Um , 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 on , 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 first were saying anxiety and then their anxiety would get better .

And it wasn't until like far too long that I realized actually I think you have POTS . 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 referral 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 assessed for POTS , like a specific neurologist , because they have to use like a 12-leaf EKG to assess for this .

And I was 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 .

And then they are then sent to us with the diagnosis and then we can work with them .

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 .

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 ?

, there is 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 that's one thing I want to mention . The other thing is going back to this idea of , as a syndrome , the symptoms .

If you're looking at really strict criteria for POTS , 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 there's different manifestations of it . So the very first established definition was in 1982 . So that's not that long ago .

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 , no-transcript . 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 .

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 and get this sense of anxiety . If it's seven or 10 minutes or eight minutes after he stood up , I don't know that I would connect that . Do you see patients that have this like aha moment ?

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 .

And when I was writing my book , I did come across a very interesting 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 .

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 say that . Do you see that connect and correlate with an autonomic dysfunction ?

And then you can have the exact opposite , where people are too in tuned 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 .

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 ? 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 ?

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'mhoot 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 telling you about all the stressful things going on in their life and that's going to 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 of 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 .

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 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 , 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 yes , next , yeah , please talk about this . So 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 , um , they can have more than one . Yeah , they can fall into more than one criteria , but one .

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 .

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 .

But then the other part is that that leads to orthostatic hypertension , and so in the hyperadrenergic 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 .

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 A lot of people that suffer from migraines as part of their picture of having hyperadrenergic POTS .

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 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 , what else 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 .

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 into 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 lightheaded , 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 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 the type of pots where , like those types of therapies can can be helpful management strategies .

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 is that more of the immune system component ?

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 treatment guidelines .

When people have mast cell activation syndrome , there's oftentimes a liver component that needs to be supported and there's herbal formulas that work really , really well to help prevent the production of histamine and clear out excess histamine .

So I think in this particular case there's often a lot of gut issues and kind of gut liver dysfunction that needs to be addressed .

We have redundancies within our nervous system , but one of the systems is this barrel receptorceptor system .

So we have these receptors in the carotid arch and 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 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 . 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 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 brainstem , and then the brainstem 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 .

And then these little disruptions , whether it's in the liver or in the brainstem

or if it's in our adrenals , like they can really affect the sensitivities of the 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's pretty cool .

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 , 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 .

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 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 .

Even if we don't have a 12-lead EKG , or even if we don't have a 12-lead EKG , or even if we don't have continuous blood pressure cups monitoring , we can still collect data on a tilt table test and on a baroreceptor 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 ?

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 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 a 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 go down to 50 . When she stood up , her heart rate would jump up to 150 . So she was so symptomatic .

I remember when we did our initial 15-minute kind of consultation over telemedicine , just so she could find out more about the work that I do , 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 a hundred beats a minute when you go from laying down to standing . That's crazy , 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 .

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 rates now in 50 .

You know , it's just you're taking away her body's own ability to try to figure that out .

There's so many nuances in care and difficulties and challenges for patients who might get misdiagnosed or miscategorized , or 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 feel like .

Okay , if I do want to find someone for help in assessing this , what do I look for and what kind of provider do I need ?

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 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 .

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 .

And my answer is 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 .

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 not a simple topic and it's not a simple treatment plan , and I think that 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 lifeafterimpact at gmailcom , 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 lifeafterimpactatgmailcom . Thanks for listening . We'll see you next

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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 .