Respiratory Physiotherapy for POTS and disordered breathing

Fainbrog

Fainbrog

Senior Member (Voting Rights)
Hi all,

I can see that this is not the most active part of the forum, but thought I'd ask anyhow..

So, I've been seen by a well renowned cardiologist in London, who, has done oodles of tests to rule in/out POTS/IST etc. and, having done a TTT and CPET (only a single day sadly, but, which I did voluntarily - crazy fool!), he said my muscles were clearly running out of energy very quickly - which I found reassuring as it appears to show one of the theories about ME is present in my physiology.

Anyhow, he suggests I'm a bit POTSy, but not classic, possibly more IST as my HR is high whether am upright or not. They also noted from the CPET that my breathing is a bit all over the place and he wants me to see a respiratory physiotherapist, to see if they can help improve this to see if it helps overall.

I'm open to anything frankly, but, am a tad concerned that my breathing is shallow because I don't have the energy to breath more deeply and/or my nervous system is awry and thus I'm not breathing properly.

Does anyone have any experience of this kind of physio? Did it help or hinder? Anything I should be on the look-out for/red flags etc? I'm concerned that any effort to increase my depth of breathing will deliver oodles of PEM with a massive cherry on top.

I've searched the forum and can't see many posts on this area..

Thanks
 
I have not seen any literature on this but I am sceptical about the idea that a respiratory physiotherapist can achieve anything for someone hose breathing seems 'a bit all over the place' - or for that matter shallop or deep or whatever.

Are you sure this is not just selling therapy for the sake of it?

I find it very hard to believe that breathing exercises are any use to anyone as a way of improving fatigue or muscle power or whatever is supposed to be the problem.

Physios invent therapies for anything they are asked to invent them for. Most of the time there isn't a scrap of evidence that they do any good.
 
Fainbrog said:
Hi all,

I can see that this is not the most active part of the forum, but thought I'd ask anyhow..

So, I've been seen by a well renowned cardiologist in London, who, has done oodles of tests to rule in/out POTS/IST etc. and, having done a TTT and CPET (only a single day sadly, but, which I did voluntarily - crazy fool!), he said my muscles were clearly running out of energy very quickly - which I found reassuring as it appears to show one of the theories about ME is present in my physiology.

Anyhow, he suggests I'm a bit POTSy, but not classic, possibly more IST as my HR is high whether am upright or not. They also noted from the CPET that my breathing is a bit all over the place and he wants me to see a respiratory physiotherapist, to see if they can help improve this to see if it helps overall.

I'm open to anything frankly, but, am a tad concerned that my breathing is shallow because I don't have the energy to breath more deeply and/or my nervous system is awry and thus I'm not breathing properly.

Does anyone have any experience of this kind of physio? Did it help or hinder? Anything I should be on the look-out for/red flags etc? I'm concerned that any effort to increase my depth of breathing will deliver oodles of PEM with a massive cherry on top.

I've searched the forum and can't see many posts on this area..

Thanks
Click to expand...

I would suggest getting copies of any documents, tests etc. And checking them.

I heard one medical practitioner on the radio say that medical errors in ERs are likely up during the pandemic. Perhaps this is the case across all aspects of Medicine. It seems to be the case in other areas of endeavor.
 
Jonathan Edwards said:
I have not seen any literature on this but I am sceptical about the idea that a respiratory physiotherapist can achieve anything for someone hose breathing seems 'a bit all over the place' - or for that matter shallop or deep or whatever.

Are you sure this is not just selling therapy for the sake of it?

I find it very hard to believe that breathing exercises are any use to anyone as a way of improving fatigue or muscle power or whatever is supposed to be the problem.

Physios invent therapies for anything they are asked to invent them for. Most of the time there isn't a scrap of evidence that they do any good.
Click to expand...

And, they charge lots of money.
 
If it were me I would try it once and decide if it made sense and seemed likely to be helpful. I think there may be some point to having someone assess whether a patient is not breathing well, for example mainly chest breathing rather than using the diaphragm, and too rapid breathing.
 
Trish said:
If it were me I would try it once and decide if it made sense and seemed likely to be helpful. I think there may be some point to having someone assess whether a patient is not breathing well, for example mainly chest breathing rather than using the diaphragm, and too rapid breathing.
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I think this is what I'm err'ing towards. As I say, I will try anything (within reason), so happy to give it a go, but my BS radar will be on high alert so as to not do me more harm.
 
There's a growing body of evidence to show hyperventilation is a problem for a significant minority of POTS patients. This evidence is also showing it is not related to a panic disorder, or other simplistic psychogenic explanations. Don't get caught up on the layman's understanding of the word hyperventilation, it isn't necessarily fast shallow breathing with panic, it can be slow, excessively deep breathing too.

Your specialists are probably aware of this and if so they won't expect you to be cured by some breathing exercises. What they will probably be hoping for is that you can learn to recognise if/when you're overbreathing and try to fight those urges. The theory being doing so will attenuate the resulting hypocapnia, which is thought to otherwise further reduce cerebral blood flow (probably part of the reason we hyperventilate in the first place).

That's one of the most common themes anyway - if they're more concerned about disordered breathing of a different type in your case I don't know. And whether this translates to any sort of effective treatment from a physio is also unclear!
 
Kitty said:
Patients don't pay directly in the UK—but the taxpayer does, of course. In the case of ME, we're often stumping up for services that are largely useless to patients.
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Thanks @Kitty

In Canada some physio is done in hospitals, and the government pays for it.

Otherwise, at least where I live, lots of physio is done in private practice, and patients pay. Physio fees are pretty high, and especially if there aren't any health improvements.
 
Trish said:
If it were me I would try it once and decide if it made sense and seemed likely to be helpful. I think there may be some point to having someone assess whether a patient is not breathing well, for example mainly chest breathing rather than using the diaphragm, and too rapid breathing.
Click to expand...

Agreed. Very good idea to not commit right off the bat to lots of sessions.
 
Jonathan Edwards said:
Is there really anything solid on this?
It sounds implausible.
Is there any published literature?
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There have been a number of controlled studies and publications on this topic from JM Stewart's group.

This one is perhaps relevant here for the comparison between POTS, panic disorder & healthy control voluntary hyperventilation cohorts:

Hemodynamic characteristics of postural hyperventilation: POTS with hyperventilation versus panic versus voluntary hyperventilation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6442665/

The key finding being:
Hyperventilation is common in postural tachycardia syndrome (POTS) and has distinctive cardiovascular characteristics when compared with hyperventilation in panic disorder or with voluntary hyperventilation. Hyperventilation in POTS is hyperpnea only, distinct from panic in which tachypnea also occurs. Cardiac output is decreased in POTS, whereas peripheral resistance and blood pressure (BP) are increased. This is distinct from voluntary hyperventilation where cardiac output is increased and resistance and BP are decreased and from panic where they are all increased.
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Their latest publication is worth a read for their theories on what's causing the disorder:
Postural orthostatic tachycardia syndrome: A respiratory disorder?
https://www.sciencedirect.com/science/article/pii/S266594412100002X

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In terms of the usefulness of respiratory physio for this, Charles Reilly (KCH Physio) has published a retrospective study with some objective data:
Breathlessness and dysfunctional breathing in patients with postural orthostatic tachycardia syndrome (POTS): The impact of a physiotherapy intervention
https://www.sciencedirect.com/science/article/abs/pii/S1566070219300992

Considering being sent to someone like Reilly would be just one part of a raft of initial treatments I wouldn't read much into those results anyway, if they are even relevant to symptoms or the wider problem.
 
I don't get the relevance of the first study. It seems the patients were told to overbreath upright and then they looked at the pattern. That seems to me a totally artificial situation that is unlikely to tell us anything about their illness. Panic patients would be likely to reproduce their attack pattern. POTS patients would not - I am not sure what more one can conclude.

In the second paper the abstract includes:
To understand this postulate, one must jettison isolationist or reductionist ideas of chemoreceptor and baroreceptor functions of the carotid body or sinus, respectively, and consider their interaction and interdependence both locally and centrally where some of its efferents merge.

I am afraid this looks exactly the same as the blather about not being reductionist that we see from the BPS people. It is basically an excuse for handwaving. Who are these straw scientists who are isolationist and reductionist? Maybe they are just careful to 'join the dots'.

The big problem I have with the way POTS is presented here is that there is supposed to be thoracic hypovolaemia and yet the tachycardia response is supposed to be abnormal. Thoracic hypovolaemia would be expected to produce tachycardia in a normally working system as far as I can see. The dots don't seem to join for me.
 
Jonathan Edwards said:
I don't get the relevance of the first study. It seems the patients were told to overbreath upright and then they looked at the pattern. That seems to me a totally artificial situation that is unlikely to tell us anything about their illness. Panic patients would be likely to reproduce their attack pattern. POTS patients would not - I am not sure what more one can conclude.
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There are published observations going back 15+ years of a subset of POTS patients hyperventilating on orthostasis, they do not need to be told to overbreathe.

This paper comes in the middle of a chain of related work, I brought it up specifically because patients tend to jump to conclusions when a doctor writes "hyperventilation" (I know I did). This is relevant to the OPs question as, whether you agree with the science of not, understanding that the doctor is not necessarily lumping us in with HVS/panic will change the expectation of care.

There are 2x further controlled studies that came before that look at this topic more generally and not at the specific group comparisons, worth a read:

Reduced cerebral blood flow with orthostasis precedes hypocapnic hyperpnea, sympathetic activation, and postural tachycardia syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016155/

Postural Hyperventilation as a Cause of Postural Tachycardia Syndrome: Increased Systemic Vascular Resistance and Decreased Cardiac Output When Upright in All Postural Tachycardia Syndrome Variants
https://www.ahajournals.org/doi/full/10.1161/JAHA.118.008854

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Can't deny the waffle & hand-waving in the most recent paper grated on me, but there has been a lot of prior clinical study and data produced on the topic that should be acknowledged.
 
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Ryan31337 said:
There are published observations going back 15+ years of a subset of POTS patients hyperventilating on orthostasis, they do not need to be told to overbreathe.
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So that is what is so puzzling - that they did tell them to over breathe as far as I can see. I guess they had to tell the panic patients to over breathe to order so they did the same for POTS patients. But if over breathing is a problem for POTS patients it will be an involuntary problem, surely.
 
Jonathan Edwards said:
So that is what is so puzzling - that they did tell them to over breathe as far as I can see. I guess they had to tell the panic patients to over breathe to order so they did the same for POTS patients. But if over breathing is a problem for POTS patients it will be an involuntary problem, surely.
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Where does it say patients were told to overbreathe? And if so, why would they tell POTS patients to increase tidal volume but not respiratory rate, but panic patients to increase both?

As far as I can see the healthy control voluntary hyperventilation group were the only ones that were told to overbreathe. The authors selected POTS & Panic patients that were already known to hyperventilate on orthostasis and then gave them a HUT, it seems obvious they would overbreathe again?

I expect the POTS-HV cohort were found by chance in the previous, wider POTS cohort study and invited back. If you look at those studies its clear from the focus on timeline of events that this overbreathing is a spontaneous response and not instructed.
 
Ryan31337 said:
As far as I can see the healthy control voluntary hyperventilation group were the only ones that were told to overbreathe.
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You may be right, the abstract is potentially confusing.

But why would panic attack patients hyperventilate on this test? Panic attacks usually occur at unpredictable times.

I also think there is a major problem with suggestibility in this sort of study. If POTS patients know that their hyperventilation is being studied during a test they are very likely to oblige with hyperventilation (high panic patients might do too).

Studying heart rate is simple enough because you cannot change your heart rate at ill. I think studying respiratory rate is much more problematic.
 
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