Heart Disease and POTS/CFS

[joejack102]

I have POTS and Chronic Fatigue Syndrome. Is there a greater, lesser, or equal risk of eventually getting heart disease for people with these conditions? Is there any hard-data, evidence, articles, or medical studies that address this?

Considering that 1 our of every 4 people die of heart disease (in the general population), I think it’s an important question to be investigated and discussed.

 

[Dechi]

I am no expert and don’t quote me on this, but from what I understand, you can have POTS along with perfectly fine heart.

I have a type of orthostatic intolerance called « neurally mediated hypotension », which means my heart can’t increase enough when I exercise, thus I am not oxygenated enough and would faint if I kept going. Or when standing up too long. The problem is with the brain, not the heart. I have done almost every heart test known to man, and my heart is perfect !

It is very important that you get tested for heart problems. But having POTS doesn’t mean your heart is the cause.

 

[Sushi]

from what I understand, you can have POTS along with perfectly fine heart.

POTS is usually understood to be an autonomic nervous system problem and since the autonomic nervous system regulates non-voluntary systems like the heart, we can end up with tachycardia and blood pressure problems.

 

[joejack102]

My concern is due to the excess stress from chronically high adrenaline in POTS patients and the excess strain POTS syndrome puts on the cardiovascular system in the longterm. If anybody sees any medical studies or literature on this topic, please share.

 

[HeleneG]

I've worried about that too since my bpm goes from 50 to 220 when I take a shower. That can't be good for my heart. I'm seeing a cardiologist in a couple of weeks so I can ask him.

 

[pibee]

I've worried about that too since my bpm goes from 50 to 220 when I take a shower. That can't be good for my heart. I'm seeing a cardiologist in a couple of weeks so I can ask him.

whoa, 220. Mine goes tops 160 bpm and still makes me quite dysfunctional
Cant imagine 220
I'd never take a shower probably.

 

[Gingergrrl]

@HeleneG Can you use a shower chair?!! They are pretty cheap on Amazon. My HR was in the 160’s and 170’s daily before I was put on a beta blocker for POTS in 2013. I cannot even imagine what 220 must feel like

 

[Dechi]

POTS is usually understood to be an autonomic nervous system problem and since the autonomic nervous system regulates non-voluntary systems like the heart, we can end up with tachycardia and blood pressure problems.

Yes, absolutely right. I’m just saying the problem isn’t with the heart itself.

 

[HeleneG]

@HeleneG Can you use a shower chair?!! They are pretty cheap on Amazon. My HR was in the 160’s and 170’s daily before I was put on a beta blocker for POTS in 2013. I cannot even imagine what 220 must feel like

I'll try a shower chair, though I think that lifting my arms to wash my hair might trigger it. I can't wait to talk to my cardiologist next week.

 

[Sushi]

I'll try a shower chair, though I think that lifting my arms to wash my hair might trigger it.

If you use a shower chair (or sometimes I just sit on the floor of the shower) and bend forward to wash your hair so that your arms are not reaching upward, that can help.

 

[StarChild56]

I have an oversized bath tub and I sit in it and use a cup to wash/rinse my hair and sometimes bend my head to rinse. Bending my head down can trigger my POTS too. As does raising my arms but I just slowly do it with the cup method (although put my arm up as quickly as I can and down as quickly as I can cause they are weak/feel lactic acid and have to put them down). It is a hard one, and because of it I go over a week washing my hair. I know that sounds gross but I physically can not do it. I have a lot of hair, fine, but lots. I've cut it way shorter than I used to keep it to help.

Same with bathing (I sit in my tub, use a cup - I have a shower chair but don't like the shower) - I do not do it for long periods it is too taxing. I do little sponge baths. Sorry if TMI.

 

[HeleneG]

I have an oversized bath tub and I sit in it and use a cup to wash/rinse my hair and sometimes bend my head to rinse. Bending my head down can trigger my POTS too. As does raising my arms but I just slowly do it with the cup method (although put my arm up as quickly as I can and down as quickly as I can cause they are weak/feel lactic acid and have to put them down). It is a hard one, and because of it I go over a week washing my hair. I know that sounds gross but I physically can not do it. I have a lot of hair, fine, but lots. I've cut it way shorter than I used to keep it to help.

Same with bathing (I sit in my tub, use a cup - I have a shower chair but don't like the shower) - I do not do it for long periods it is too taxing. I do little sponge baths. Sorry if TMI.

I hope the shower chair works. I always start my day with a shower. I'd hate to have to give that up.

 

[Gingergrrl]

bend forward to wash your hair so that your arms are not reaching upward, that can help.

I used to bend forward to wash my hair, and was unable to use a hairdryer whatsoever for about 4 yrs. Now I can do both in a normal position (but have to do both while seated, not standing).

Sorry if TMI.

No such thing as "TMI" here

I hope the shower chair works. I always start my day with a shower. I'd hate to have to give that up.

I really think the shower chair will be helpful for you, Helene, and please let us know how it goes. Once I got the chair (I think in 2014?) I was able to take a shower without tachycardia but I had the added problem of muscle weakness where I could not turn on the two shower faucets on my own and could not squeeze or pump the shampoo and conditioner bottles. It was not until several months of IVIG that I re-gained the muscle strength to do this on my own which was an amazing day. Not sure if anyone else here has had that issue?

 

[StarChild56]

I hope the shower chair works. I always start my day with a shower. I'd hate to have to give that up.

I hope it does too, and I bet it would. I have used mine and it is comfortable to sit in (but I don't use it because I need to squeegee the shower after use which I can't do, among some other peculiar to me things!).

No such thing as "TMI" here

Thank you

 

[HeleneG]

I just tried it and it did help. My pulse stayed under 100 until I got out and dried myself off (sitting down) and it went up to 120. An improvement. I hope it continues.

 

[StarChild56]

I just tried it and it did help. My pulse stayed under 100 until I got out and dried myself off (sitting down) and it went up to 120. An improvement. I hope it continues.

That is great news!

I always lay in my recliner in my towel for a long time before then maybe doing one more thing...like getting on deodorant. Then lay down again. Put on soft clothes/pjs. Lay down. Takes me a long time but it is the only way I can do it. I never do it on a day I need to go somewhere - I do it the day before. But same process getting dressed slowly, resting, brush hair in chair, rest. Put on moisturizer. Rest. And this is with betablocker to help my POTS.

 

[HeleneG]

I'll experiment more with it and more resting after the shower. Thanks for you suggestions and encouragement.

 

[alex3619]

Orthostatic intolerance in all its forms has its own share of vascular problems which may affect the heart. I think our share of all cardiovascular problems is about the same as healthy people, but we get different issues, such as diastolic heart failure instead of systolic heart failure. We get a lot of heart valve problems according to what I have seen over the years, though these are not typically fatal in the short term if I recall correctly. Some of us also have cardiomyopathy, probably not commonly diagnosed either.

However in terms of atherosclerosis, based on anecdotal reports I heard of decades ago, this is uncommon. It is more common in smokers as you would expect.

So I would say that OI, which includes NMH and POTS, and ME and CFS probably do not increase risk of heart problems, but we do have a different mix of heart problems, and some are things doctors are not expecting to see, such as diastolic heart failure.

There is some data, not conclusive, that we get these problems earlier in life though. This has not been adequately investigated.

Right now I have spiralling high blood pressure on top of severe orthostatic intolerance. If this progresses as I expect I might see a need for higher and higher doses of medication to decrease blood pressure. If I mess it up and take too much I might go into orthostatic shock, and my blood pressure spiral to zero. These are not risks most doctors are used to thinking of, they understand high blood pressure more or less but do not understand how this interacts with orthostatic intolerance. I don't really understand it either, I don't think there is enough research on this.

 

[TenuousGrip]

but we get different issues, such as diastolic heart failure instead of systolic heart failure.

Some of us also have cardiomyopathy, probably not commonly diagnosed either.

I always like to preface this with "In my very personal opinion ....."

I don't actually believe that we 'get' cardiomyopathies and diastolic heart failure per se. I believe things like that are what we have -- what's really wrong with us (those of us with these Dx's) and what's making us sick.

HFpEF (the newer term for diastolic heart failure) is a bit of a catch-all diagnosis -- like ME/CFS may be too. It really just describes a symptom/sign. In this case ... heart failure.

The best way to figure out what's at the root of HFpEF (and other cardiomyopathies) tends to be an endomyocardial biopsy (EMB). But they're complicated and certainly have risks. They're also rarely ordered if a patient isn't acutely ill.

If you look into 'subacute' or 'chronic' myocarditis, for example ... or basically any inflammatory or infectious cardiopmyopathy ... they present an awful lot like ME/CFS.

[An underlying immune dysfunction or infection can certainly render us more vulnerable to these cardiac things too.]

I'm off to Johns Hopkins in a few short weeks. I'll be seen in their HFpEF clinic where a heart biopsy is routinely ordered. I'm hoping to get my answer from this trip, though I haven't found any answer that could be considered good news.

Meanwhile ... the digging that I've done in the last couple years has me thinking that anybody with significantly elevated NT-pro-BNP may very well have some sort of cardiomyopathy at the ... er .... heart of their illness. It's just a blood test and may be something that many of us could convince our primary care physician (or even a cardiologist, if necessary) to order.

Particularly if any of your symptoms is cardiac (POTS, OI, shortness of breath, arrhythmias, palpitations, exercise intolerance, lightheadedness, dizziness, near-fainting, fainting, etc.). Some of these aren't specific to cardiac issues but can certainly be associated with the heart.

In my very personal opinion ... elevated NT-pro-BNP (in the PWME world) is likely to eventually be viewed as a biomarker that defines at least a certain subgroup of PWME.

 

[HeleneG]

Orthostatic intolerance in all its forms has its own share of vascular problems which may affect the heart. I think our share of all cardiovascular problems is about the same as healthy people, but we get different issues, such as diastolic heart failure instead of systolic heart failure. We get a lot of heart valve problems according to what I have seen over the years, though these are not typically fatal in the short term if I recall correctly. Some of us also have cardiomyopathy, probably not commonly diagnosed either.

However in terms of atherosclerosis, based on anecdotal reports I heard of decades ago, this is uncommon. It is more common in smokers as you would expect.

So I would say that OI, which includes NMH and POTS, and ME and CFS probably do not increase risk of heart problems, but we do have a different mix of heart problems, and some are things doctors are not expecting to see, such as diastolic heart failure.

There is some data, not conclusive, that we get these problems earlier in life though. This has not been adequately investigated.

Right now I have spiralling high blood pressure on top of severe orthostatic intolerance. If this progresses as I expect I might see a need for higher and higher doses of medication to decrease blood pressure. If I mess it up and take too much I might go into orthostatic shock, and my blood pressure spiral to zero. These are not risks most doctors are used to thinking of, they understand high blood pressure more or less but do not understand how this interacts with orthostatic intolerance. I don't really understand it either, I don't think there is enough research on this.

Thanks. I learned a lot from your reply. I'll see my cardio in a few days and ask him about it. I normally have low blood pressure, but I've never taken it standing up. I'll have to do that.