Effects of POTS on the heart / Prognosis

[ben_uk]

Hi,

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Effect of POTS on the heart

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I read somewhere (can't remember where) that the tachachardia caused by POTS isn't dangerous to the heart.

However, there seems to be contradictory information.

For example, I know that a continual heart rate of 110+ can cause heart problems (a cardiologist told me this).

Do people say it is not harmful to the heart because with POTS the heart rate fluctuates a lot (usually lowers when lying down - but only generally shoots up when standing)? i.e. because it does lower sometimes, this spares the heart damage?

I would have thought (common sense that the extra strain on the heart from the tach and blood pressure variations would cause damage to the heart.

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Effect of POTS on life expectancy

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One more question: if POTS is not dangerous (but is chronic), how come most people with POTS are young?! Where are the older ones? It seems to me that the doctors just haven't researched the effects on life expectancy yet.

Your comments would be appreciated.

Thanks,

Ben

[StandUpSitDown]

I'm not a doctor. So I don't really know any of this.. but I have wondered about this as well, and here are my hunches. I am seeing my doctor later today, so I'll see if she has any answer to these.

1) High heart rate and life-expectancy.

I honestly believe we don't know the answer to this one beyond the obvious high heart rate is worse than low heart-rate. But I don't think POTS is worse than other forms of elevated heart-rate, and for those (like me) who have a heart-rate that is pretty normal sitting and standing, but don't stand all that much day-to-day anyway, well, my heart rate isn't elevated all that much... (total time).. it's just that when I stand, my heart-rate stinks... I would imagine that if my heart-rate were at my standing level 24 hours a day, the doctor would tell me something different.

2) Older people with POTS.

POTS is a new diagnosis. And older people have, anyway, growing orthostatic intolerance. So their symptoms are put in a 'just getting old' category. You'd need a study to see if lots of older people have undetected POTS. And personally, with the very limited studies of POTS going on right now. I would rather have the researchers looking for a maintenance-level cure than doing longitudal studies that offer no value except to tell me when, on average, I will die.

[ben_uk]

Hi, thanks for your reply.

If you could ask the doctor that would be helpful.

I am seeing an autonomic specialist on Friday and I will ask the same and feedback to the forum afterwards.

I know it is a morbid question but it is something I worry about (rightly or wrongly).

It would make me more positive to learn that it is in fact not harmful.

Thanks again,

Ben

[michiganjan]

Ben, I am 58--have had POTS at least 25 years. My heart still shows normal on echos, stress tests.

A few years ago, I was sitting in the waiting room of Dr. Grubb's office, and met a woman with POTS who is in her 70s. I also have a POTS friend in her 60s.

My current cardiologist believes that it is better to control the high heart rates. He said it is not dangerous in the short run, meaning it is okay for me to be off all meds for a couple or weeks or months even, but in the long run, it is better to have it controlled.

[ben_uk]

Thanks for your message. There is hope yet!

Take care,

Ben

[Ianankatie]

Wow, it is really reasuring to see that life does go on with this awful condition!

Hope you all continue to stay well!

[Dizzy Dame]

Funny thing, I asked my doc about this yesterday. He said that having IST can cause heart problems, because one's heart is constantly working doubley-hard. POTS patients however, in most cases, only have tachy when standing. He told me that I could go into heart failure if I stood for 20 years without sitting down (he's a joker) )

My doc's wife has POTS, and has had it since she was in her early 20's, she's now in her late 40's and doesn't have any problems with her heart.

[MomtoGiuliana]

http://www.clinicalcardiology.org/productc...iew_1_yusuf.pdf

This is a good basic article on tachycardia, if you have not seen it.

I have thought about that inverse relationship of heart rate to life expectancy in animals in general. Who knows if it

really holds for humans. Certainly there are examples of POTS patients that live to reach life expectancy and beyond--and there is no study that claims otherwise.

My specialist keeps saying that POTS is not life-threatening--but he has never

said that it could or couldn't contribute to life-shortening. There are no studies yet to show this inverse relationship in humans, and therefore the benefits of long term beta blocker therapy for POTS patients is not really known. Both he and my

endocrinologist imply that the greatest benefit of taking a beta blocker is that it relieves the discomfort brought on by extreme tachycardia caused by

POTS, not that it is protecting my life in the long-term. That just is not known. Anyway, that is touched on in this article, that addresses how

different tachycardias are diagnosed.

As others have said--I echo--try not to worry about how POTS might or might not affect life-expectancy, while I DO understand your concern--b/c it is natural to be concerned. The best thing to focus on is what you can do to control your symptoms. Hopefully you have a doctor working with you on that.

take care, Katherine

[futurehope]

Ben uk,

I doubt older people frequent internet forums as much as younger folks. But, I had worked as a computer programmer so the computer was not new to me. Therefore, I'm on the internet frequently.

Also, I'm 54 yo - diagnosed at 51.

[ben_uk]

Thanks Dizzy Dame - this is informative.

Ben

[ben_uk]

Hi Katherine - this article was very informative, thanks!

Ben

[persephone]

Is it not true that if you experience tachycardia all the time then you are eventually susceptible to cardiomyopathy (thickening of the heart muscle?)

I'm sure I read that somewhere.

[MomtoGiuliana]

persephone--I think there is some truth to that statement--I think generally heart rate has to be sustained at 120 bpm or higher for long periods of time for this to be a concern. I remember my endocrinologist stating that. Most cardiologists seem to recommend treating severe tachycardia with a beta blocker, probably primarily for this reason.

Keep in mind, most POTS patients experience lowered, even very normal rates when sitting or lying down.

Katherine

[jc1]

Hi everyone,

This is my first post here. I've been doing a lot of reading but just never posted. I just found out about this syndrome this summer. My younger sister was diagnosed with syncope earlier this year so I began to read.

I've suffered with tachycardia since 1977. I was diagnosed with panic disorder in January of 91 but to me it really never fit the illness. I would have these spells where my heart rate would increase to 150 to 170 bpm and my chest would feel like it was going to blow up any minute. I felt like I was dieing and we would head for the hospitals. I would end up in there for a week with them doing every test you could imagine and of course they never would find a thing wrong with me.

That all started in 1977. in January of 1991 I went on total disability from my illness. In 1996 I had my first heart attack. I've had 5 heart attacks at this point. I have 17 stints and have had quadruple bypass.

I now know what I've been struggling with all these years. All I had to do is read the first article on the main page of this site and bingo, that was me to a T. Well I think I'm getting a little long winded but to answer your question I'm not so sure that it doesn't effect the heart.......Long term. I'm 51yrs old now and this all started when I was 24yrs old.

I thank all of you for listening,

Jack

[morgan617]

Hi Jack and welcome! You have certainly been through the wringer. First I would like to say that I have never seen a link being coronary artery disease and orthostatic intolerance. That being said, it in no takes away from the fact you may well have ans problems. Simply having one disease does not exclude all others.

I do think however, we have to make sure there is a clear distinction between your open heart surgeries, stents and heart attacks, and POTS.

POTS is not caused by clogged arteries and high cholesterol, which I would assume you would have considering your age, which is very young, for all those problems. Is there a family history of high cholesterol and heart disease?

POTS affects the heart, but in a different way. Your tachycardia could certainly be a result of OI problems. What is your bp like?

We all certainly understand the panic diagnoses and endless er visits.

In order not to terrify people, I just think it needs to be said that it sounds like you must have two separate things going on.

What meds do you take and do they help? Do you still have the tachycardia even after the surgeries and stents? It all sounds very interesting. Hope you and your sister can get some answers. morgan

[ben_uk]

Hi Jack,

Sorry to hear of your problems - I hope things calm down.

How do you know it is autonomic-related? Did you get the tachichardia when standing or when supine as well (i.e. was it constant)?

Are you going to get tested for POTs, etc.?

Ben

[jc1]

Morgan,

Yes in my case it is hereditary. My father had two heart attacks one at 45yrs and one ar 46yrs old. My b/p was normally very good however it would go up when I was in pain. Believe me I have studied everything about this illness and I have or had just about every symptom listed with this illness.

Right now I'm having a lot of trouble with my stomach and bowls. I also get real bad headaches that start from the left side of my neck and travel right up into my head. I have problems with dizziness and my eyes. A lot of times it feels as though my eyes are jumping to the left side.....Its kind of hard to explain. When I use to go to the hospitals they would always test my blood. They would always tell me that I must have the flue or something because my immune system was always elevated.

Two weeks before my quadruple bypass I had a stress thallium test and my cardiologist assured me I was fine. No blockages anywhere and he did not need to see me for 4 to 6 months. Two weeks later I was in step down ICU when I crashed and it took them close to two hours to stabilize me so they could take me to the ICU where my doctor was waiting. We agreed that he would cath me the following day and if there were blockages he would call in the sergine.....well you know what happened.

In the last several years they have determined that a large number of blockages are scare tissue. What happens is you develop a crack in the build up of your artery. In my case with the immune system always working I start to build scare tissue where the crack was and I end up back in the hospital with a blockage. This is what happened with all my stints they recluded......Also POTS causes the artery's to restrict.....I'm sure in my case that don't help matters. I'm in the process of seeing Dr Grubb at MCO. I only live about 25 to 30 miles from MCO. So as soon as I can get in to see him I'll let everyone know.

Thanks so much,

Jack