Recent Diagnosis of POTS but also have episodes of Bradycardia?

[Anamaria]

I have recently been diagnosed with POTS after failing a tilt table test and being seen by multiple physiscans. What keeps bothering me about the diagnosis is I had a more recent episode where I felt as though I was going to pass out while driving I pulled over and attached a pulse Oximeter to my finger and it read 48 then it shot up to 170. This was noticed on my event monitor reading as well. I was under the impression that with POTS syndrome you typically have an elevated heart rate (which I do most of the time). I’ve asked my physcians about the episode I had and no one can explain why it happened. They have since prescribed me medications to lower my heart rate but I haven’t started them because I am scared that it will mke my heart rate too low in the event that I had another Brady episode.... this morning I woke up feeling pressure in my chest I was still lying flat when I took my heart rate it was in the 100s. I’m so concerned about my heart rate that I feel it’s causing me anxiety. My blood pressure also fluctuates from being either slightly high, relatively normal, or even on the lower side. Is all of this things that I will have to learn to manage with this syndrome? Thanks so much for reading my post and hopefully you can provide me with a more detailed understanding of something that is so complex. Has anyone else had Bradycardia not while lying down and suffer from POTS?  Is this all normal? I’m so confused and frustrated at this point. 

[Steven]

The typical POTS pattern is a higher than normal rise in heart rate upon standing up (a rise of 30bpm or more in the minutes after standing). There are more detailed diagnostic criteria online.

Many people with POTS also have a high heart rate when lying down or sitting at rest, but some of us have a low heart rate when lying down or sitting at rest.

My heart rate at is often in the 40s or 50s when lying down or sitting at rest. I also have fluctuating blood pressure and episodes of chest discomfort/pains/pressure.

In colder temperatures I've noticed instances of my heart rate going from 40s lying down to 50s initially upon standing then 60s a minute later and 70s a minute after that, whereas the usual pattern for me is a larger increase initially upon standing that then drops off slightly then stays around that level (eg. 50s to 90s then stays around 80s, or 70s to 130s then stays around 120s).

I don't have any easy solutions, as simply increasing or decreasing heart rate or blood pressure is not a great solution to large fluctuations.

I'm trying to get autonomic testing done to look for more detail about the biological mechanisms behind the symptoms, which vary from one dysautonomia/POTS person to another. I'm also due to get a report back in a week or so for a 24 hour Holter monitor, which will give me some more detail than I get measuring with a blood pressure arm cuff at home.

A broad explanation for bradycardia is an overactive parasympathetic nervous system, whereas tachycardia can similarly be explained by an overactive sympathetic nervous system. Although sympathetic overactivity is probably more commonly associated with POTS, partly because of tachycardia being used in the name and diagnostic criteria, many dysautonomia and POTS people have symptoms of parasympathetic overactivity. Normally, in a healthy person, there are constant adjustments of both to maintain a balance appropriate to continually changing circumstances, with sympathetic activity going up as parasympathetic activity goes down and vice versa. Parasympathetic overactivity can seem a lot like sympathetic underactivity and sympathetic overactivity can seem a lot like parasympathetic underactivity. So it can be difficult to work out exactly what's going on and what can be done to make it better unless autonomic testing is done to, at least partially, identify what's working as it should and what isn't.

I hope that's of some help and isn't too complicated.

If you haven't done so already, you could also type bradycardia into the search box at the top-right of the page and read what others have written about it in the past. There's more than a decade of previous discussion on here.

[Anamaria]

9 hours ago, Steven said:

The typical POTS pattern is a higher than normal rise in heart rate upon standing up (a rise of 30bpm or more in the minutes after standing). There are more detailed diagnostic criteria online.

Many people with POTS also have a high heart rate when lying down or sitting at rest, but some of us have a low heart rate when lying down or sitting at rest.

My heart rate at is often in the 40s or 50s when lying down or sitting at rest. I also have fluctuating blood pressure and episodes of chest discomfort/pains/pressure.

In colder temperatures I've noticed instances of my heart rate going from 40s lying down to 50s initially upon standing then 60s a minute later and 70s a minute after that, whereas the usual pattern for me is a larger increase initially upon standing that then drops off slightly then stays around that level (eg. 50s to 90s then stays around 80s, or 70s to 130s then stays around 120s).

I don't have any easy solutions, as simply increasing or decreasing heart rate or blood pressure is not a great solution to large fluctuations.

I'm trying to get autonomic testing done to look for more detail about the biological mechanisms behind the symptoms, which vary from one dysautonomia/POTS person to another. I'm also due to get a report back in a week or so for a 24 hour Holter monitor, which will give me some more detail than I get measuring with a blood pressure arm cuff at home.

A broad explanation for bradycardia is an overactive parasympathetic nervous system, whereas tachycardia can similarly be explained by an overactive sympathetic nervous system. Although sympathetic overactivity is probably more commonly associated with POTS, partly because of tachycardia being used in the name and diagnostic criteria, many dysautonomia and POTS people have symptoms of parasympathetic overactivity. Normally, in a healthy person, there are constant adjustments of both to maintain a balance appropriate to continually changing circumstances, with sympathetic activity going up as parasympathetic activity goes down and vice versa. Parasympathetic overactivity can seem a lot like sympathetic underactivity and sympathetic overactivity can seem a lot like parasympathetic underactivity. So it can be difficult to work out exactly what's going on and what can be done to make it better unless autonomic testing is done to, at least partially, identify what's working as it should and what isn't.

I hope that's of some help and isn't too complicated.

If you haven't done so already, you could also type bradycardia into the search box at the top-right of the page and read what others have written about it in the past. There's more than a decade of previous discussion on here.

Steven, thank you fo much for your detailed reply! I’m hoping the bradycardia is just another annoying POTS symptom. I was most concerned about that because it happened while I was driving and not “resting.” I just had autonomic testing last week at Vanderbilt University. I should get my results some time next week. Their program is by referral only but if you aren’t set up with physicians that know a lot about Dysautonomia I would ask your current physician to refer you there. Please keep me updated on what your holster says and other testing, I realize that POTS is unique to each individual but just being educated about it gives me tremendous peace of mind. 

[Steven]

That's great that you'll soon have autonomic testing results from Vanderbilt. 

I live in Australia where there's nowhere like Vanderbilt or the Mayo Clinic - but I've been reading textbooks and articles, watching talks etc. from leading people at those places. I've already established that there's only limited testing available in my state, so I'm currently following up on an interstate referral, as well as a local cardiology referral (even if only for them to provide further official confirmation that my state can't offer testing that I need), while trying to establish who offers what where and how to access it. For the interstate referral, I got a letter last month informing me there's an expected wait time of approximately 9-12 months for an initial consultation to discuss arranging testing. My GP arranged the Holter monitor, but it seems it'll be another month or more before I actually get to speak to a cardiologist unless something in the Holter monitor results is considered to be urgent.

I'll share some details about my Holter results on here in the next week or two. The more people share details online the easier it will be for other people to get the info they want when they search for it.

Maybe the Holter results will turn up something that can cut the wait time for autonomic testing.

If there's anything confusing in your results from Vanderbilt, I have textbooks which contain extensive detail on the kinds of tests you would have had (ie. what each test is designed to measure and why, the methodology used for each test and why, what data looks like for healthy people and for real case study patients with a variety of conditions, limitations and pitfalls of each test etc.). There should be a range of people on here willing to share their knowledge and experiences with the tests and how the results are reported and interpreted.

[Anamaria]

15 hours ago, Steven said:

That's great that you'll soon have autonomic testing results from Vanderbilt. 

I live in Australia where there's nowhere like Vanderbilt or the Mayo Clinic - but I've been reading textbooks and articles, watching talks etc. from leading people at those places. I've already established that there's only limited testing available in my state, so I'm currently following up on an interstate referral, as well as a local cardiology referral (even if only for them to provide further official confirmation that my state can't offer testing that I need), while trying to establish who offers what where and how to access it. For the interstate referral, I got a letter last month informing me there's an expected wait time of approximately 9-12 months for an initial consultation to discuss arranging testing. My GP arranged the Holter monitor, but it seems it'll be another month or more before I actually get to speak to a cardiologist unless something in the Holter monitor results is considered to be urgent.

I'll share some details about my Holter results on here in the next week or two. The more people share details online the easier it will be for other people to get the info they want when they search for it.

Maybe the Holter results will turn up something that can cut the wait time for autonomic testing.

If there's anything confusing in your results from Vanderbilt, I have textbooks which contain extensive detail on the kinds of tests you would have had (ie. what each test is designed to measure and why, the methodology used for each test and why, what data looks like for healthy people and for real case study patients with a variety of conditions, limitations and pitfalls of each test etc.). There should be a range of people on here willing to share their knowledge and experiences with the tests and how the results are reported and interpreted.

I will keep you in my thoughts and pray that you’re able to be sooner. I know the wait can be difficult. I’ll definitely write next week when I get the results. 

[Debbie Rose]

My Brady was occurring before my POTS diagnosis (actually NCS) and that was part of why they had a hard time diagnosing. At rest I am 45-55, so my HR of 120 was HORRIBLE for me considering my resting, and my BP would drop too. It took a tilt table test to define it.  If I go from standing to lying flat my heart actually pauses and I briefly feel like I am passing out. But the body is a remarkable thing and has alot of "safety" built in. Not that I go from standing to lying abruptly at all, now that I experienced it, but sometimes I forget.  So I still have my symptoms, I am on midodrine now-which helps. Was on fludrocortisone but its effectiveness wore off. But beta blockers lower my BP (tried it decades ago for migraines) so I stay clear. I have clonazepam for anxiety/chest pain

[Anamaria]

12 hours ago, Debbie Rose said:

My Brady was occurring before my POTS diagnosis (actually NCS) and that was part of why they had a hard time diagnosing. At rest I am 45-55, so my HR of 120 was HORRIBLE for me considering my resting, and my BP would drop too. It took a tilt table test to define it.  If I go from standing to lying flat my heart actually pauses and I briefly feel like I am passing out. But the body is a remarkable thing and has alot of "safety" built in. Not that I go from standing to lying abruptly at all, now that I experienced it, but sometimes I forget.  So I still have my symptoms, I am on midodrine now-which helps. Was on fludrocortisone but its effectiveness wore off. But beta blockers lower my BP (tried it decades ago for migraines) so I stay clear. I have clonazepam for anxiety/chest pain

I feel as though at this point I’m developing anxiety. I’m currently taking Propanolol for my high heart rates but I still have a few episodes of it getting into the 120s. The doctors seem to think that something else might be causing my POTS so my mind is always thinking of what it could be. My blood pressure fluctuates a lot from being a little high, to normal, to too low. I’ve learned this is a very difficult syndrome to manage.