Do You Have Heart Disease With Pots

[ken870]

i was wondering when you have pots do they think you have bad heart problems or is it just a high rate issue.

[Ernie]

Hi,

I have supraventicular tachycardia besides POTS. I don't want the ablation because it would worsen me so I tolerate for now.

[MightyMouse]

My heart is in GREAT shape, it's just a high rate issue, which for my body, is NORMAL response to the fact that my blood pressure is falling. My heart is trying to keep me oxygenated by speeding up... and an ablation would only make me pass out more b/c that speeding heart rate keeps my brain getting the oxygen it needs to function. The trick for me, is to keep my bp from falling. If it stays pretty even, I feel pretty darned good (although that sounds way easier than it actually is to pull off!).

Nina

[lalalisa]

Hello,

From everything I've read and heard POTS seems to be a separate issue from heart disease. I have congenital heart disease but there is no correlation between my 2 health issues. (I was born with a coarctation of the aorta and a bicuspid valve instead of tricuspid)

Take care,

Lisa

[cardiactec]

I have POTS, along with supraventricular tachycardia (specifically ectopic atrial tachycardia) which I had ablated and also nonsustained ventricular tachycardia. I also have tricuspid and mitral valve prolapse. I also have a PFO (little trivial hole between the top two chambers of the heart - the atria). the PFO isn't an issue and isnt necessarily a "true" defect like an ASD or VSD. My heart function (EF) was down when the tachy issues were first noted and they thought my function being down was due to undiagnosed tachy issues for years, but now, having been on antiarrhythmics for years, my heart function is normal.

[ironsc]

My POTS has caused "Organic Heart Disease", and was explained by my cardiologist that there is actual organic damage to my heart from the untreated POTS and I'm at very serious risk of having heart failure in 5-10 years. Because I ignored my problems and overdid my self (and never really feinted, too), I ended up doing terrible damage to my heart because it was always beating too fast/hard all the time.

Thankfully, my doctors are helping me protect my heart from further damage. Both with medications, and hitting me with a wiffle-ball bat everytime I over-do myself.

Cam

[mkoven]

Hi Cameron,

Sorry to hear that. I'd heard that POTS doesn't do damage, so it's disturbing to hear. What type of damage and how was it diagnosed? Do you have a low ejection fraction?

[mountainsunflower]

Is it the POTS that does the damage or is it the uncontrolled high sinus tachycardia? I have had lots of talks with my cardio about this- but I think I am still confused. So, I am curious, Cam, if you had a high rate most of the time and never allowed your heart to rest or...? The reason I am curious is because I am trying hard to avoid meds (the bb makes me feel horrible) and spend a lot of time monitoring my heart rate. From what my cardio says- I should make sure my heart rests (at rest it is under 80 bpm) throughout the day and at night- but he wants to see me often to make sure I am not developing any problems. I guess I will bring this up with him again and make sure I am not putting myself at risk!?!

[cardiactec]

cameron, how fast were your heart rates and how consistently high were they?

[ironsc]

I ended up damaging it primarily because of my stubbornness to ignore symptoms. I used to bike ride about 10+ miles a day (7 days a week!) to class in any weather - that got me a heart attack one day when it was cold and a light mist/rain. Used to chop down dead trees with an axe in the blazing sun while it was over a hundred in the middle of summer - that got me another one. But, I also have really high blood pressure, which some doctors seem to contribute to my lack of feinting. So I really didn't have any frequent, obvious negative sanctions towards my actions.

Basically, I ended up damaging it because I'm at 200bpm+ while doing these things for prolonged periods of time for many years (in addition to a "resting" blood pressure of 140's/100's). This wasn't something instant... it took years and years of damage to get to this point. We're talking 200bpm+ for hours almost every day for years (like mowing the lawn, running/biking, etc).

Ever since my first heart attack, my heart beats faster than normal when resting, it has a murmur that comes and goes, it has painful rythym issues (nonsustained VT's), abnormal EKG with right axis deviation, and an odd QT interval. I think the worst moment in my life was when I read my cardiologists notes that I got copies of... "I think the prognosis for him is very poor..." That finally woke me up.

I suppose there's really two ways of looking at it - POTS causes the standing tachycardia, which eventually caused the heart damage because of my ignorance and stubbornness over many years. So, I suppose two causes, one effect.

Low ejection fraction? Well, my left ventricle was estimated 65%-70% / calculated 69%, but I don't think that's low. That's all I can find in my cardio notes on that.

I was classified as Class III on the New York Heart Association progression of Heart Failure by my POTS doctor. Another wake-up call. But I'm probably a statistical anomoly in all this. But it's certainly a lesson in not being extrememly stubborn. It was diagnosed using just holter monitors, heart ultrasounds, tilt-table, and treadmills. A nuke/treadmill was done, too. The heart disease/damage was diagnosed 4 years before the POTS, and listed as "unknown cause of damage" (not at birth, not viral).

Again, I'm probably just a fluke in all this, and a lot of extremes are in play. Even then, POTS might only be one of many contributing factors, but it did contribute. This is just what happened to me, and it certainly isn't the norm (then again, what is?). I still don't think it's the full picture, but this is what they've told me.

Cam

[Sunfish]

as others have said, generally speaking POTS & heart disease do NOT go hand in hand. similarly though, as others have also said, there are always exceptions to the rule. some may have heart disease & POTS as independent entities, such that they are just "lucky" & happen to have both (i.e. no relationship between the two). and there may be rare instances, such as in cameron's case, where untreated POTS is thought to contribute to a multiplicity of factors in the etiology of heart disease, but this is VERY rare & not something that someone under a doctor's care for POTS needs to be losing sleep over. while it's obviously not quantifiable evidence, in the years that i have read every single post here on DINET (yes, i'm a compulsive moderator ), cameron is the first person for whom POTS has been connected with heart disease; there are others, some of whom have posted here, who have heart disease, but it's generally seen as unrelated.

as a bit of a sidenote to you cameron, if you're reading this, a part of me admires your stubbornness/ tenacity. i probably shouldn't be saying that, and by no means intend to minimize the complications you now have b/c of it, but another VERY stubborn individual a part of me wants to give you a high five for you ability to push through your body's attempts to slow you down. i too have brought on some trouble by my degree of stubbornness over the years, most pointedly needed spine/ neck surgery due to an injury that wouldn't have occurred had i listened to my body a bit more, but while my byline is that my degree of stubbornness & perseverance is both a curse & a blessing, i also believe firmly that, on the balance, its more the latter than the former. i would have called it quits long ago if i didn't have the personality i have so, despite it causing some trouble along the way, i would have missed out on so much of life, and very possibly would have kicked the bucket already, if it weren't for being so stubborn. so, to my fellow stubborn friend, i have to believe that the same stubbornness that may have been your downfall (in terms of the damage to your heart) will also see you through not only that but any other challenges in your life, health-related or otherwise.

but back to the question at hand...

as an anecdotal example of a VERY healthy heart in the midst of what is classified by the autonomic docs as severe & progressive dysautonomia, i've actually been told that my heart may very well be healthier than many not only in spite of my illness but BECAUSE of it. i'll explain a bit more. in the midst of severe septic shock (i.e. multiple body systems shutting down due to toxins put out by systemic infection), i've had sustained blood pressure & heart rate readings that are often not survivable, particularly by someone weakened by recurrent episodes of severe infection as i was at the time. it was postulated, however, that my body,and specifically my heart, was better prepared to survive the extreme vitals that were happening because of the fact that it (my heart) was stronger by way of already enduring crazy fluctuations in BP & HR for so many years! so in other words, my docs actually felt that my dysautonomia, specifically the HR & BP fluctuations, may have prepared my heart to better deal with episodes of acute illness that may have otherwise killed me. kinda cool, eh? guess i can't say i wish i didn't have dysautonomia, eh? of course i wouldn't have been septic in the first place if it weren't also for the dysautonomia, specifically the GI components, but ah well. just thought the example might be helpful in seeing that, up to a point, fluctuations in BP & HR can be considered a way to strengthen the heart - sort of as exercise would strengthen an athlete - such that some of our dysautonomic hearts may in fact be healthier/ stronger than those of some "healthier" folks out there! obviously this is just a theory, albeit one agreed on by several of my docs, but if nothing else it makes a point. b/c based on testing i've had i know for certain that i don't have heart failure or any type of heart damage, and that's certainly no thanks to any semblance of regular BP &/or HR readings in my day to day life.

hope this helps calm any fears people might have,

melissa

[ajw4790]

Hi,

All of my heart function tests were fine. My issue is more of a rhythm and blood pressure issue.

If someone has heart disease or damage, it is from another cause and not POTS.

[cardiactec]

I second ajw. though cardiomyopathy can develop from very high heart rates that are sustained for years (generally this includes, according to my cardiologist, heart rates that are 100 + during sleep, as well as tachycardic rates sustained throughout the day), the majority of POTS population do not have rates that are sustained enough, or high enough at that, to cause damage to the heart.

my heart rates, i was told, were 200 + when they first saw it on holter 6 years ago, but during sleeping periods, my rates were normal, and also somewhat normal when sitting during the day. even so though, my heart function (EF) was 45% when they first found my rates to be exceptionally high. normal EF is above 50%. after getting on meds, my EF is now 60%.

It definitely is possible to put wear and tear on the heart with high heart rates sustained over a period of years, but i would think it a rarity in the POTS population for reasons mentioned above . I also think in my situation, i had arrhythmias that were not POTS (sinus tach), thus my rates were a heck of a lot higher than POTS rates (sinus tachy) and more sustained than my POTS (sins tach), which i think also contributed in my situation to my heart function being down.

cameron, what are the docs plan for your particular situation. i understand your stubbornness, i really do. nobody wants to be weighed down with illness, nobody wants to be limited in activities or employment because of illness. i see it more as eagerness and desire to have a fulfilled life than of stubbornness. BUT, as you have already stated, your hesitation to want to see the problems and your drive to lead a normal life, in a way, has somewhat harmed you. I still don't think you are to blame for this. it is tough to accept the reality of hardship and then titrating life activities because of such hardships and limitations. i wish the best for you cameron, and hope they can settle your cardiac and pots issues down, and that you still will enjoy life, even with your limitations.

take care.

cardiactec.

[ironsc]

cardiactec,

My current neurologist, a specialist in POTS and ANS stuffs, just wants to tackle each problem on their own after stabilizing my heart. This year alone, I've seen two cardiologists, a cardio EP, and two neurologists on the heart/POTS issue, and all agreed that in the question of the chicken and the egg, POTS came frist then the heart damage came second because of the POTS. But I'm just repeating what they've been telling me. Are they seperate issues? I think the possibility still exists. For now, this is what they all agree on, but it doesn't change my treatments in the end.

I really wish I could see Dr. Grubb, though. Not only is he a cardio EP, but he is a, if not THE, POTS expert.

Cam

[jjpots]

I have mild mitral valve prolapse and have had 2 post pardum cardiomyopathies.

JJH

[willows]

I have a hole in the back of my heart somewhere , mitral and aortic leaks and am bradycardiac beating at just 50 beats or less in normal day to day conditions.

I then drop to under 40 at rest or when asleep .

When I do get some sleep I sometimes 'bottom out ' which means I get angina attacks when asleep and on many an occasion my husband has had to 'poke me ' to get me to wake up as I dont appear to be breathing a lot and my pulse is in the 30 's.

I've also had heart failure .

But I'm still here ............ AMI xxxxxxx

[ramakentesh]

'First became ill in 1969 but left without real help until I was Diagnosed in 2002 with Autonomic Nerve Dysfunction , so thats 32 years of being treated like a lunatic, attention seeker & hypochondriack'

Man and there i was complaining about being treated like that for ONE year! I know what its like. I feel for you!