Long term heart health

[vep123]

I was wondering, because I learned that the repeated tachycardia in congestive heart failure w hypertrophy in turn increases hypertrophy, do POTs patients experience similar heart problems later on? I asked my Dr. but he said that there aren't any known long term cardiac problems in POTs... but that can't be right, almost constant tachycardia day in and day out has to do something. I'm really curious and surprised that there's not much out there about this.  

Do you have any experience reg. this?

[Pistol]

To tell you the truth - I used to think the same thing. At the beginning of my dysautonomia I had severe tachycardia and PVC's for years and I always thought that if the heart is a muscle and it has to work extra hard - will it not become bigger like any other muscle would? --- The answer - in my case - was: No. All functional properties of my heart are normal and there is no evidence in echo/ EKG/stress test/ cardiac cath/ labs etc that my heart has suffered any anatomical change at all from the years of "overtime". 

[jklass44]

I was always super concerned about this, and I too asked my doctors about it (this was before I got a diagnosis so they didn't really have a good answer for me). I had a cardiac MRI done about a year and a half ago - at that time about 5 years into symptoms - and literally the only thing they could find that was abnormal was that my heart was on a weird axis. 

Other than that and an intermittent heart murmur, my heart muscle itself is completely normal. It's kinda weird and surprising, but hey I won't complain!

[StayAtHomeMom]

I think a lot of us worry about the damage having tachycardia could have but so far mine is fine. I haven't seen anything about it causing issues in the long run. 

[MomtoGiuliana]

I do understand your concern.  Beta blockers are used for many POTS patients to control hr.

From what I remember reading a resting heart rate of 120 BPM or higher can be a concern for causing heart damage.  This can happen with certain conditions like hyperthyroidism.   Most people with POTS do not have a resting hr that high.

[bombsh3ll]

Frequent concern here too - not so much the high HR as for me that is situational and not at rest, but the heart constantly being flogged by high levels of catecholamines and pumping against what I feel in my case is high resistance.

I guess only time will tell. I've had it for over 4 years now and may get another echo soon. 

B x

[Jan]

How are our high heart rates different from an aerobic work out?  I like to just pretend standing up is my workout.  

[MomtoGiuliana]

@bombsh3ll--do you take a beta blocker?  Do you think that would be protective?  I know what you mean and that used to concern me too.  Over time I have had fewer episodes of very high hr when standing, and taking a beta blocker seems to blunt this too.

@Jan--I've wondered that too.  I wear a fitbit now and I get a report that breaks down how much time each day my heart rate was in "Peak", "Cardio" and "Fat burn".  Typically it's in "fat burn" several hours a day--which I am not sure is normal for someone who does not have POTS.  But I am not sure if this is actually a good thing or not!

[bombsh3ll]

2 hours ago, MomtoGiuliana said:

@bombsh3ll--do you take a beta blocker?

I can't tolerate any beta blockers unfortunately as I am already presyncopal all the time and they make me worse. Beta blockers reduce cardiac output and cerebral blood flow (even in healthy people) which is exactly the opposite of what I am looking for. Yes they reduce the chest pain, pounding heart and non psychogenic sense of anxiety but being unconscious or having to lie flat all the time isn't a worthwhile trade off for me. There is a lot of evidence to show they are cardioprotective in many different cardiac disorders though for those who can tolerate them.

 

22 hours ago, Jan said:

How are our high heart rates different from an aerobic work out?  I like to just pretend standing up is my workout.  

I love that idea! Sadly though I think the difference is that when an athlete or healthy person is exercising, a large amount of blood is returned to the heart (preload) which fills and stretches the heart muscle before it gets expelled in the next heartbeat. When we stand up, too little blood comes back to our hearts so they are frantically pumping away half empty and not getting that nice stretch which builds heart muscle. 

B x

[yogini]

On 9/18/2018 at 3:55 PM, Jan said:

How are our high heart rates different from an aerobic work out?  I like to just pretend standing up is my workout.  

You're right, the body can tolerate higher heart rates during exercise, but docs usually recommend for an hour a day. Some of us are exercising all day. If only it helped my waistline~  But I think there isn't any long-term damage from dysautonomia.

[Scout]

I do think about this a lot, to be honest. But I also remind myself that I've done all I can to try and combat these symptoms (to the best of my abilities), and seeing a cardiologist yearly (sometimes twice a year), helps keep peace of mind.

My cardiologist has said there is a small chance that my heart could enlarge over time, and I appreciate his honesty, but he did emphasise that it is rare and would likely be reversible. I did have a severe episode once and my left atrium actually had enlarged a little, but it went back to normal. Keep in mind I also have mitral valve prolapse which contributes to that, and which I get monitored. 

I would certainly recommend seeing a cardiologist annually if you do have heart symptoms, and always address any concerns with them, but try not to worry too much about it: a lot of people have POTS and their hearts are fine and dandy, even after many decades.