POTS with bradycardia?

[Pistol]

I currently have my sister visiting. She also has hyperadrenergic POTS like me and is going to see my autonomic specialist. As we are preparing for her appointment she told me that she NEVER has tachycardia, only bradycardia. But she has every single symptom that I have, including hypertension upon standing, orthostatic and exercise intolerance, brain fog, fatigue, palpitations … you name it. And she has POTS. I have never heard of someone who has POTS with bradycardia - only that sometimes we can get bradycardic but mostly have the tachycardia. Anyone else here have POTS without tachycardia? 

[Sushi]

5 hours ago, Pistol said:

I currently have my sister visiting. She also has hyperadrenergic POTS like me and is going to see my autonomic specialist. As we are preparing for her appointment she told me that she NEVER has tachycardia, only bradycardia. But she has every single symptom that I have, including hypertension upon standing, orthostatic and exercise intolerance, brain fog, fatigue, palpitations … you name it. And she has POTS. I have never heard of someone who has POTS with bradycardia - only that sometimes we can get bradycardic but mostly have the tachycardia. Anyone else here have POTS without tachycardia? 

Could that be another form of dysautonomia than POTS? Don’t you need to have a 20-30 rise in HR on standing to have a POTS diagnosis? I had all those symptoms minus hypertension on standing and had bradycardia rather than tachycardia. I say “had” because I now have a pacemaker.

[Outaker]

It’s not real . Norepinephrine causes bradycardia by activating the baroreflex which makes the heart rate go down and elevate bp how high is her bp get on diastolic ? Systolic should not be affected 

[Stark]

I sort of fall into this camp. My resting heart rate is in the 40s (sometime upper 30s when lying down for extended periods). It rises to the 80s or 90s when I stand, which is more than enough for a POTS diagnosis, but isn't technically a considered tachycardia since it is usually sub 100 bpm

[Pistol]

@Outaker - thanks, that might be what is going on. Her BP normally runs 150/90 on a good day ( with meds ) but used to get as high as 240/120 and higher prior to meds. She used to be in hypertensive crisis often. 

@Stark - that might be what is going on. I took her BP this morning and it was 150/90 sitting but her pulse was 50. So when she gets up and her HR goes to 80 - I guess that would be still POTS. Man - we people act weird! 

[Scout]

I don't have bradycardia all the time, but I do regularly have times when my HR is lower than 60. Ironically, it's usually when my BP is surging. 

One of my biggest symptoms, other than the labile BP, is erratic heart rate. So, I do get tachycardia, and I have that most days, but it's often a very irregular heart rate. Fast. Very fast. Then slow. Then fast. Etc. Bouncing around like that. 

I wonder if your sister is, as mentioned above, experiencing another kind of Dysautonomia as well, or something relating to her baroreflexes? 

[edriscoll]

I am one of those people with the "strange" symptoms.  I have tachycardia but I also have bradycardia quite often, usually within the same episode.  At first I was diagnosed with POTS, but I think that was because it was the only dysautonomia disorder they could name.  After more testing and observations,  the neurologist and cardiologist agree that I have "General" dysautonomia - meaning I have autonomic dysfunction and many of the symptoms of dysreflexia (I have thoracic spine damage) - but my symptoms really don't fit into any one classification.  I believe there are many more people out there with a similar situation to mine who never get diagnosed because we don't easily provide checks on the list of symptoms to fit with any one disorder.  Interestingly, treatment is the same in that it is all hit and miss, trial and error until you find what works for you.  

[toomanyproblems]

Like many others here, I have both bradycardia and tachycardia. My HR will dip into the 40s at night sometimes. One thing I've noticed anecdotally is the closer to normal my average resting HR is, as measured by Fitbit, the better I feel from POTS symptoms. When I started IVIg my average resting HR was in the 50s. It went up to high 60s low 70s after the loading dose of IVIg. The most dramatic improvement was the dizziness decreased. I had been dizzy every time I stood up. That changed to only occasional dizziness. This had a huge effect on my quality of life since it allowed me to drive again. For years I've had a lot of variation in symptoms yet my tachycardia events on standing seem pretty consistent. 

I've always wanted to ask if anybody here correlated symptoms with resting heart rate. IOW is the bradycardia causing more symptoms than the tachycardia? 

[Sushi]

13 hours ago, Scout said:

So, I do get tachycardia, and I have that most days, but it's often a very irregular heart rate. Fast. Very fast. Then slow. Then fast. Etc. Bouncing around like that. 

Have you ever been evaluated for arrhythmias during an episode like that? You can get a pretty good idea as to whether you are in a normal rhythm by checking the rhythm of your pulse with your fingers. An arrhythmia is very irregular from beat to beat—beat, beat, slight pause, double beat—that kind of thing. A Fitbit or an HR monitor will not give accurate readings then, but an Apple 4 watch or a Kardia Mobile device will. They actually take EKG’s and computer-read them. You can email the EKG to your doctor. I’m bringing this up from my personal experience of Afib.

 

2 hours ago, toomanyproblems said:

I've always wanted to ask if anybody here correlated symptoms with resting heart rate. 

Before I got a Pacemaker my resting HR was always in the 40’s. After I got it my EP and I experimented with different resting HRs and my OI was noticeably better at 70 rather than the standard 60.

[jklass44]

12 hours ago, toomanyproblems said:

I've always wanted to ask if anybody here correlated symptoms with resting heart rate. IOW is the bradycardia causing more symptoms than the tachycardia? 

That’s interesting that you mention this! My docs had recently increased my dose of Ivabradine because I was still getting tachycardia when I shouldn’t, but the small increase was enough to drop my HR to the 30/40s and I felt just as awful when my HR was high, maybe even a bit worse. So now I’m back to the previous dose and just dealing with the break through tachycardia - theres no winning!!!

[Pistol]

@jklass44, @toomanyproblems - in the beginning of my illness I was on Metoprolol which dropped my resting HR into the 40's but did not much for the tachycardia or the PVC's. I definitely had symptoms like chest pain, shortness of breath and dizziness with the slow HR ( which felt different than the symptoms from tachycardia ) but I minded the tachycardia more. 

[HangingByAThread]

I have pots (hyper) and pretty bad bradycardia when I sleep (23 beats a minute - takes me a good hour or more to get out of the bed in the morning because I have to hydrate and down 4 grams of salt to get my blood pressure up).  There have been other times where I feel everything slowing down and I can just fall asleep on my feet - so I think it is bradycardia - and then that will be followed by tachycardia.

[Sushi]

31 minutes ago, HangingByAThread said:

I have pots (hyper) and pretty bad bradycardia when I sleep (23 beats a minute

That is really low! What does your doctor say about it?

[HangingByAThread]

I've asked about a pacemaker but have been told no.  I take Methyldopa but only in the morning (so that it doesn't worsen the night time bradycardia - in addition to the bradycardia, I often have horrible tachycardia 30-45 minutes after falling asleep...…….so my body is all over the place).  I've been on countless monitors and once the monitoring company even called me at 5:00 a.m. to alert me (The call went like this "Hello, I'm sorry to wake you up so early.  Can you tell me, what exactly were you doing?" to which I said "I was sleeping" and they said "you need to call your cardiologist immediately." but refused to tell me the reason.  It was later that the doctor told me how low it went (I have bradycardia in the low 20s quite often, as well as heart block) but both cardiologists have said not to worry because it is only when I'm asleep that it's so low.  It used to really frighten me that maybe I won't wake up one day but I try not to dwell on it because being scared to fall asleep was only making things worse.  Lately, I have been taking more salt tablets before bed, thinking maybe this will help me.  I was always told not to have salt at night due to being hyperadrenergic but I find the salt at night helps me feel better. 

[ddschool]

I’m not classified as POTS, just dysautonomia b/c I don’t get tachy. I did have bradycardia, got a pacemaker 9 yrs ago. Still have all of the other symptoms incl hypotension. If you’re HR is low & doc won’t consider a pacemaker, I’d get another opinion. I wore a monitor for 30 days then got my pacemaker.

[Pistol]

@HangingByAThread - I think it warrants a second opinion. A HR below 30 BPM - no matter whether you are asleep or not - should be taken seriously if it continuously happens. 

[Scout]

On 7/24/2019 at 1:11 AM, Sushi said:

Have you ever been evaluated for arrhythmias during an episode like that? You can get a pretty good idea as to whether you are in a normal rhythm by checking the rhythm of your pulse with your fingers. An arrhythmia is very irregular from beat to beat—beat, beat, slight pause, double beat—that kind of thing. A Fitbit or an HR monitor will not give accurate readings then, but an Apple 4 watch or a Kardia Mobile device will. They actually take EKG’s and computer-read them. You can email the EKG to your doctor. I’m bringing this up from my personal experience of Afib.

 

Before I got a Pacemaker my resting HR was always in the 40’s. After I got it my EP and I experimented with different resting HRs and my OI was noticeably better at 70 rather than the standard 60.

Hi Sushi.

I have had monitors etc, from 24 hour ones to 72 hour ones. The only thing they've ever found is SVTs, IST, a "junctional rhythm", and PVCs. No afib.

Sometimes I think I am having non-sustained v-tach, as I get several thumps in my chest in succession, very hard and painful, takes the wind out of me. I think the most I've had in a row have maybe been 5 or 6, but they are rare events, and have not yet been caught on monitor. 

I'm due to have another monitor this week actually in preparation to see my cardiologist. So I'll keep you posted.

Really hope you're recovering well after your mitral surgery! 

 

[Outaker]

17 minutes ago, Scout said:

Hi Sushi.

I have had monitors etc, from 24 hour ones to 72 hour ones. The only thing they've ever found is SVTs, IST, a "junctional rhythm", and PVCs. No afib.

Sometimes I think I am having non-sustained v-tach, as I get several thumps in my chest in succession, very hard and painful, takes the wind out of me. I think the most I've had in a row have maybe been 5 or 6, but they are rare events, and have not yet been caught on monitor. 

I'm due to have another monitor this week actually in preparation to see my cardiologist. So I'll keep you posted.

Really hope you're recovering well after your mitral surgery! 

 

Hows your potassium? If i keep mine above 4 I get no PVCS crazy..

[Pistol]

8 hours ago, Scout said:

Sometimes I think I am having non-sustained v-tach, as I get several thumps in my chest in succession, very hard and painful, takes the wind out of me. I think the most I've had in a row have maybe been 5 or 6, but they are rare events, and have not yet been caught on monitor. 

I used to get several PVC's in a row, it happened when my ANS was very unstable and I had frequent tachycardia events at that time. It felt exactly as you describe - powerful contractions that knocked the wind out of me. Very scary! They caught a bunch of those on monitors. I was told not to worry unless they go above 6 in a row. Today I hardly get any PVC's at all since I am well controlled on medications . When I do get them I increase my BB and that takes care of them.  

[p8d]

I am hyper pots and the higher my BP goes the lower my HR gets.  It only occasionally gets in the 40s, I only have caught it laying down but it gets down to the lower 50s when BP is >145 sys.  I just figured it was normal for non-normal me.

[Sushi]

On 7/25/2019 at 8:09 PM, Scout said:

Really hope you're recovering well after your mitral surgery! 

I really am and OI is so much better!

[shirleyp]

I was diagnosed with POTS just recently back in like April time of this year for me I get very hot red face then when my blood pressure drops it turns white as it goes and I pass out my blood pressure goes from normal range to very low my heart rate I was in the hospital tonight from 65 down to 45 within a few seconds and they kept telling me everything was fine I'm having really bad chest pains shortness of breath where I can't breathe right and they dismiss me to go home telling me to use icy Hot on my chest for the tightness and the stabbing pain on top of taking Tylenol knowing I have one functioning kidney on top of a fatty liver.  these symptoms are getting worse.

Has anyone had symptoms like this with POTS, gone to ER, and told by drs everything was OK?