Is there any solid research that exercise is helpful for POTS?

[Chelby]

The Levine protocol developed from Levine's research reported a 50% drop out rate - alarm bells much!

He also claims POTS is purely from deconditioning and not a dysautonomia at all. This makes no sense given how often POTS occurs during peak physical fitness.

I have no reason to trust in his protocol, even if I so badly want to. Is there any solid evidence that exercise can be beneficial?

 

[matt321]

How are you defining peak physical fitness?

 

[Jesse2233]

Yes look up Benjamin Levine’s POTS exercise studies. He’s wrong about deconditioning causing POTS but the studies and clinical reports are compelling. Obviously though someone with mito dysfunction is going to want to address that first

 

[Sushi]

The Levine protocol developed from Levine's research reported a 50% drop out rate - alarm bells much!

He also claims POTS is purely from deconditioning and not a dysautonomia at all. This makes no sense given how often POTS occurs during peak physical fitness.

I have no reason to trust in his protocol, even if I so badly want to. Is there any solid evidence that exercise can be beneficial?

Yes look up Benjamin Levine’s POTS exercise studies. He’s wrong about deconditioning causing POTS but the studies and clinical reports are compelling. Obviously though someone with mito dysfunction is going to want to address that first

I'm responding from memory but I think my memory is correct. This research was designed for astronauts who had become deconditioned from protracted periods in space. Evidently, their symptoms were very much like POTS, so....they wanted to do an exercise study but POTS patients were much more easily available than astronauts. Take from that what you will.

 

[mattie]

If you have only POTS, yes exercise can improve you.
If you have ME too than exercising like Levine recommendeds for POTS is impossible.

 

[Gingergrrl]

If you have only POTS, yes exercise can improve you.

I truly believe it depends which POTS sub-group you belong to and what is causing it. In my case, per both of my doctors, I have Autoimmune POTS (due to beta-adrenergic and other autoantibodies that cause POTS and Dysautonomia).

This includes auto-antibodies that weaken my muscles and breathing in addition to purely causing tachycardia upon standing. So exercise would be impossible for me. I've had improvements with treatments that have decreased the autoantibodies (high dose IVIG and Rituximab) and the level that I can now stand and walk without wheelchair, and the level of overall exertion that I can now do, is significantly better than what it was pre-treatment.

But I am not even close to being able to exercise and do not know if I ever will be.

 

[notmyself]

from my experience exercise is improving pots..i measure my heart rate changes from suspine to standing..on the periods i exercise and spend less time in bed i don t even have pots, exercise is also improving my energy for 1 or 2 days ..unfortunatelly exercise is making other things worse, latelly is flu symptoms , muscle weakness and weird pain( not the normal lactic pain after exercise), extreme twiching wich is really scaring and profund insomnia...but strictly about pots, exercise would have been good for me

 

[Ravn]

The impression I get from discussions about exercise in POTS-only groups is that some people find it very beneficial (though they may still have to start slow and in supine position) and others find it makes them worse.

I suspect there are two reasons for this:

1/ Those who get worse are misdiagnosed and really have ME as well as their POTS symptoms.
2/ @Gingergrrl is correct about there being POTS subgroups, with some being responders and others not.

I can't find the relevant links right now but there have been studies debunking the deconditiong theory.

The only way to find out if you would benefit from exercise is to try - very, very carefully of course. I assume you have ME? In which case you'll be aware that most of us view any sign of PEM as a signal to slow down.

 

[kushami]

Dr Satish Raj talks about the importance and benefits of exercise at 25:30, including the research from Levine and Fu.

(The video link may look like it’s not working, but it does work. Just click on “Learn more.)

Although this lecture is from 2017, it is still very relevant and I recommend watching the whole thing if you can. It’d divided into topics so easy to break up and watch in sections.

I’m not sure exactly which study he is referring to (it’s accidentally covered on the slide), but I think it’s one of these:
https://pubmed.ncbi.nlm.nih.gov/25487551/
https://pubmed.ncbi.nlm.nih.gov/22641777/
https://pubmed.ncbi.nlm.nih.gov/26690066/

Note that none of this research was done on people with POTS and ME/CFS nor is the protocol recommended for people with both, but the question posed in this thread was “Is there any solid research that exercise is helpful for POTS?”.

Also, dropout rates for all rehab programs tend to be high. Here’s study at random from a cardiac rehab program in New Zealand that lost 39% of participants.
https://academic.oup.com/eurjcn/article/21/6/578/6511319?login=false

Also you will here Dr Raj saying several times that the protocol is not for everyone, and acknowledging that the dropout rate is high.

Another great source of info on this topic is Dr Peter Rowe. He often discusses patients who were formerly very active and were able to return to being active with support from medications.

 

[kushami]

Also, it might be helpful to keep in mind that all interventions for POTS have dropout rates.

So there might be a dropout rate for compression tights, for midodrine, for beta-blockers, IV fluids, just as there is for the exercise protocol.

And for all sorts of reasons – it didn’t work, there were side effects, or it wasn’t sustainable in terms of cost or time or the person’s current capacity. Plus it’s a syndrome, which means there are subsets of symptoms that can be hard to pin diwn at the start of treatment.

The autonomic experts, the ones who really study and care about this, acknowledge all this and keep trying with each patient. Or at least that’s what they say in their lectures, coz that’s how I heard it

 

[cfs since 1998]

The Levine protocol developed from Levine's research reported a 50% drop out rate - alarm bells much!

He also claims POTS is purely from deconditioning and not a dysautonomia at all. This makes no sense given how often POTS occurs during peak physical fitness.

I have no reason to trust in his protocol, even if I so badly want to. Is there any solid evidence that exercise can be beneficial?

I developed severe POTS one day after starting valacyclovir. I don't think I got deconditioned from the time I went to bed to the time I woke up the next morning. Dr. Levine sounds like an idiot.

 

[Seven7]

hmm I was told that, I exercise now with trainer 4 times a week squats hard core and other things (I am in remission of CFS). I also walk / eliptical, So I am hitting hard the legs for 1.5 years about now. I still get POTs w periods mostly. So not sure what to believe here.

 

[kushami]

There’s another aspect to consider in POTS and in any condition in which blood is pooling in the legs: the skeletal muscle pump.

This is a clever way the body has of helping to return the blood to the heart by taking advantage of the action of large muscles to squeeze the blood in the veins upwards.

(It also happens in the arms to a lesser extent.)

So the idea is that strengthening the leg muscles may help those muscles pick up some of the slack from the other anti-blood-pooling mechanisms that are not working properly.

I don’t know whether this can be measured or whether any studies have been done to prove that strengthening muscles strengthens the muscle pump effect. But it is part of the thought behind recommending leg strengthening exercises for those who can manage them.

Also, while you are doing the exercises, you are presumably pumping extra blood to the brain, so that helps in and of itself in OI.

I think Dr Tae Chung would cover this in his lectures for Dysautonomia International, although I can’t remember because I watched them a while ago.

I think activating the skeletal muscle pump is also the basis for these counterpressure manoeuvres for orthostatic hypotension:

https://onlinelibrary.wiley.com/doi/full/10.1111/joim.12249

(May not be muscle pump for all of them – but is definitely for some.)