Poll: Have you been diagnosed with POTS/POSH, NMH, or OH with your ME?

Poll: Have you been diagnosed with POTS/POSH, NMH, or OH with your ME?

  • Postural orthostatic syndrome of hyperventilation (POSH)/postural hyperventilation but not POTS

    Votes: 0 0.0%
  • orthostatic hypotension (OH)

    Votes: 0 0.0%

  • Total voters
    26

Wishful

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I had a brief period (couple of months?) when I had something probably related: when I stopped exertion (lifting heavy stuff, or walking more briskly than usual), I did lose blood flow to my brain, resulting in greying out a bit until I crouched or laid down. It hasn't reoccurred in a decade or more, and I never got a diagnosis, so I checked 'none of the above'.
 

Celandine

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Daughter was diagnosed with "CFS" by rubbish paediatricians. I eventually diagnosed PoTS (so easy to do even as a non-professional at home) and then got her referred to a consultant who confirmed. So, not sure if that counts if what you're looking for is whether docs are picking up PoTS along with ME. In fact, when I reported my PoTS suspicion to the rubbish paediatrician, she told me it didn't matter because it was just a syndrome like CFS and there was nothing that could be done. Unbelievable and infuriating.
 
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This study found 27% of ME/CFS patients (Fukuda criteria) had POTS, versus 9% of healthy controls.

This study found 13% of ME/CFS patients (Fukuda criteria) had POTS
I think we need a study with ICC or CCC criteria followed as these numbers seem low.

I also keep wondering if we are doing ourselves a disservice keeping POSH as part of POTS. I think it should be distinct or more studies done.

I'm drinking 1 quart salt water daily so my POTS isn't showing up now per standard POTS criteria, but I still feel myself hyperventilating/ getting bad air hunger when standing still for 12+ minutes. So a doctor could misdiagnose me as not having POTS and not do any further testing even though I clearly have both POSH, POTS, and dysautonomia.

I guess I'm proposing the new standard protocol include breaths per minute and carbon dioxide levels for ALL ME tilt table testing.

What do you think? I just fear patients are getting missed (having been missed myself the first time around). Doctors just dont do these tilt table tests right or consistently.
 

Hip

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I also keep wondering if we are doing ourselves a disservice keeping POSH as part of POTS. I think it should be distinct or more studies done.
I had not heard of postural orthostatic syndrome of hyperventilation (POSH). It does not seem to be a medically recognized condition (not found on any scientific or medical websites). Where did you read about POSH?
 
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I guess I'm proposing the new standard protocol include breaths per minute and carbon dioxide levels for ALL ME tilt table testing.

What do you think? I just fear patients are getting missed (having been missed myself the first time around). Doctors just dont do these tilt table tests right or consistently.
I like it. My doctor didn't even want to do a tilt table test on me. I still feel I have OI.
 

Learner1

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I guess I'm proposing the new standard protocol include breaths per minute and carbon dioxide levels for ALL ME tilt table testing.
I didn't have any issues with this, so don't feel it's necessary for every patient.
What do you think? I just fear patients are getting missed (having been missed myself the first time around). Doctors just dont do these tilt table tests right or consistently.
My doctor, an autonomic neurologist, did a full battery of autonomic nervous system testing, not just a tilt table test.

I also think that the symptoms that you are discussing are likely autoimmune in nature, and that patients should be tested for autoimmune antibodies causing these symptoms, and if autoantibodies are identified, treating the autoimmune condition will it likely help reduce symptoms.
 
I also think that the symptoms that you are discussing are likely autoimmune in nature, and that patients should be tested for autoimmune antibodies causing these symptoms, and if autoantibodies are identified, treating the autoimmune condition will it likely help reduce symptoms.
The postural hyperventilation (POSH) is related to dysautonomia, not autoimmune disorders, as we see clinically it happen alongside POTS and breathing is controlled by your autonomic nervous system. It isn't shortness of breath as in asthma, it is a literal increase in your breaths per minute and decrease of eTCO2 upon standing only. It reverts almost immediately upon laying horizontal. See this article.

Hyperventilation is common in postural tachycardia syndrome and has distinctive cardiovascular characteristics when compared with hyperventilation in panic disorder or to voluntary hyperventilation. Hyperventilation in POTS is hyperpnea only, distinct from panic in which tachypnea also occurs. CO is decreased in POTS, whereas peripheral resistance and BP are increased. This is distinct from voluntary hyperventilation where CO is increased and resistance and BP are decreased and from panic where they are all increased.
I also think that the symptoms that you are discussing are likely autoimmune in nature, and that patients should be tested for autoimmune antibodies causing these symptoms, and if autoantibodies are identified, treating the autoimmune condition will it likely help reduce symptoms.
I also have some light asthma a good portion of my life from cats and I've been on steroid inhalers for 7 years before I got ME through to today (8 years total). ME seems to have worsened it a bit, but overall it's separate from my ME. I also have Crohn's disease. What issues specifically do you think are autoimmune? My C-Reactive Protein, ANA, and Sed Rate were tested multiple times and they all are fine repeatedly.

My doctor, an autonomic neurologist, did a full battery of autonomic nervous system testing, not just a tilt table test.
I'd definitely be interested in more thorough autonomic testing. I will try to have that done as that could be helpful.

I didn't have any issues with this, so don't feel it's necessary for every patient.
I think this type of thinking (I didn't have it, so testing isn't necessary) likely won't get us far with ME. I think we need to encourage doctors to cast a wide net, testing for more, not less, to capture all component issues of ME a patient is dealing with. Painting a fuller picture of the pathology (especially related to dysautonomia which is neurological) both individually and for the disease as a whole would lead to progress in our understanding of the disease.
 
Hemodynamic characteristics of postural hyperventilation: POTS with hyperventilation versus panic versus voluntary hyperventilation

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

We conclude that all POTS is related to decreased CO, decreased central blood volume, and increased systemic vascular resistance and that a variant of POTS is consequent to postural hyperventilation.
...Systemic vascular resistance was defined as mean arterial blood pressure/CO.
So my question is if it's possible for the body to "hide" an increased heart rate while the decreased CO, decreased central blood volume, and increased systemic vascular resistance (and in 1/4 of cases hypetventilation) are all still happening.

Is it possible to "hide" increased heart rate due to environmental factors such as high salt intake before the test and/or circulation altering factors (e.g. tights)? In my case it seems it was but this is by no means scientific testing.

I'm just really trying to understand why I hyperventilate and feel so faint while standing but my heart rate isn't increasing above the normal healthy 15 bpm upon standing. I'll check my blood pressure too.

But now I'm really curious to know if anyone else with POTS-with-Hyperventilation has done tilt testing while on salt and compression treatment and what their HR activity shows--while hyperventilating (thus knowing you're having issues) based on HR alone do you still fail the tilt test or do you pass it now? (Home testing)

If all POTS is related to decreased CO and if it's possible for the body to "hide" increased heart rate due to environmental factors such as salt/compression, then I'd still update my proposition to be that the new standard protocol for ALL ME Tilt Testing include carbon dioxide levels (in addition to standard heart rate and BP, etc.) to ensure we are getting a complete picture and to ensure we are diagnosing the 1/4 of POTS patients with the hyperventilation variant.

Edit: for typo
 
Last edited:

Learner1

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The postural hyperventilation (POSH) is related to dysautonomia, not autoimmune disorders, as we see clinically it happen alongside POTS and breathing is controlled by your autonomic nervous system. It isn't shortness of breath as in asthma, it is a literal increase in your breaths per minute and decrease of eTCO2 upon standing only. It reverts almost immediately upon laying horizontal. See this article.





I also have some light asthma a good portion of my life from cats and I've been on steroid inhalers for 7 years before I got ME through to today (8 years total). ME seems to have worsened it a bit, but overall it's separate from my ME. I also have Crohn's disease. What issues specifically do you think are autoimmune? My C-Reactive Protein, ANA, and Sed Rate were tested multiple times and they all are fine repeatedly.



I'd definitely be interested in more thorough autonomic testing. I will try to have that done as that could be helpful.



I think this type of thinking (I didn't have it, so testing isn't necessary) likely won't get us far with ME. I think we need to encourage doctors to cast a wide net, testing for more, not less, to capture all component issues of ME a patient is dealing with. Painting a fuller picture of the pathology (especially related to dysautonomia which is neurological) both individually and for the disease as a whole would lead to progress in our understanding of the disease.
https://www.celltrend.de/en/pots-cfs-me-crps/
 

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Ah, the POTS (Dysautonomia) being triggered by an immune response, definitely. My understanding is POTS comes on with ME, just as mine did so if ME is neuro immune, makes sense POTS is. These articles are really helpful.

"A test panel for POTS patients is available. In addition to auto-antibodies against the Beta-1 adrenergic receptor, auto-antibodies against the Beta-2adrenergic receptor, auto-antibodies against the muscarinic cholinergic Receptor 3 (M3) and auto-antibodies against the muscarinic cholinergic Receptor 4 (M4) we will test muscarinic cholinergic Receptor 1 (M1), muscarinic cholinergic Receptor 2 (M2), muscarinic cholinergic Receptor 5 (M5), as well as Alpha-1 adrenergic receptor auto-antibodies and Alpha-2 adrenergic receptor auto-antibodies."
I wonder, why dont doctors in the US use a diagnostic test like this. I've only heard of tilt testing.

Do you know if that doagnostic test is available in the US? Does it catch the 25% of POTS patients with the hyperventilation variant? It might not, but still fantastic there's an accurate biological diagnostic test.

Edit: corrected does to "do"
 

Learner1

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I wonder, why dont doctors in the US use a diagnostic test like this. I've only heard of tilt testing.

Do you know if that doagnostic test is available in the US? Does it catch the 25% of POTS patients with the hyperventilation variant? It might not, but still fantastic there's an accurate biological diagnostic test.
I had this set of tests done by an autonomic neurologist in the US.

https://www.neuroassociates.us/autonomic-test-preparations.html

My blood was drawn in California and sent to Germany to CellTrend. I don't know of any lab in the US that does those particular tests.

ME/CFS patients tend to have or have had various infections, especially Epstein-Barr and other herpes viruses but others as well, which tend to trigger various types of autoimmunity. Here is a listing of tests collected from patients here on PR that create all kinds of symptoms including those that you mention. It would be worthwhile to do some of the tests and see which ones apply to you, and then work with a doctor on treatment aa the woman in the above case study did. I have had both IVIG as well as Rituximab which has helped me reduce the drugs I was on to control my autoimmune issues.
 

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I had this set of tests done by an autonomic neurologist in the US.

https://www.neuroassociates.us/autonomic-test-preparations.html

My blood was drawn in California and sent to Germany to CellTrend. I don't know of any lab in the US that does those particular tests.
Ok, good to know, thank you. Looks like your doctor did the following tests for dysautonomia and POTS:

The autonomic test has four components, completed during the approximately 1 1/2 hour-long test:
  1. Heart Rate response to Deep Breathing: Measures how your heart rate responds to deep breathing
  2. Heart Rate response to Valsalva: Measures how your heart rate and blood pressure responds to forceful exhalation.
  3. Tilt Table Testing: Measures your blood pressure and heart rate while laying and upright at 80 Deg for 10-15 minutes.
  4. Sudomotor function (QSART): Measures sweat output contained in QSART capsules. Four capsules will be placed on your forearm, foot and leg and a small current will be sent through the capsules containing acetylcholine. This will stimulate your skin nerves and sweat glands to sweat. The test is painless; you may only feel a warm, tingling like sensation during the test.
These will measure both your sympathetic and parasympathetic system.
It still didn't look like your doctor captured your CO levels or breathing rate as affected by an upright position to determine it POTS-HV (hyperventilation variant) was present. Shucks.

Still really interesting stuff to know there's a blood test for POTS. But I'm still not clear on if it identifies the POTS-HV variant, are you? Also, do you know exactly which markers are elevated that confirms POTS? I can't find that but I guess it would tell you in your results? The cost is like $500+ USD, but maybe insurance covers it? Also, that's still vastly cheaper than the $23,000 my hospital charges insurance for a tilt test!

https://www.celltrend.de/en/pots-cfs-me-crps/
POTS-diagnostics
A test panel for POTS patients is available. ... (IMPORTANT: Only send the seperated sera after centrifugation, not the entire unprocessed blood or plasma sample) for auto-antibody POTS-diagnostic to the CellTrend lab.
  • Angiotensin-II-Receptor-1 (AT1R) IgG-auto-antibodies
  • Endothelin-Receptor-A (ETAR) IgG-auto-antibodies
  • Beta-1 adrenergic receptor auto-antibodies
  • Beta-2 adrenergic receptor auto-antibodies
  • Muscarinic cholinergic (M1) receptor auto-antibodies
  • Muscarinic cholinergic (M2) receptor auto-antibodies
  • Muscarinic cholinergic (M3) receptor auto-antibodies
  • Muscarinic cholinergic (M4) receptor auto-antibodies
  • Muscarinic cholinergic (M5) receptor auto-antibodies
  • Alpha-1 adrenergic receptor auto-antibodies
  • Alpha-2 adrenergic receptor auto-antibodies
  • labservice.

I want to see a world where the golden standard for testing is like what your doctor is doing above but with breathing rate and CO added. Let's start the movement for more comprehensive POTS/dysautonomia testing! 😊💜
 
ME/CFS patients tend to have or have had various infections, especially Epstein-Barr and other herpes viruses but others as well, which tend to trigger various types of autoimmunity. Here is a listing of tests collected from patients here on PR that create all kinds of symptoms including those that you mention. It would be worthwhile to do some of the tests and see which ones apply to you, and then work with a doctor on treatment aa the woman in the above case study did. I have had both IVIG as well as Rituximab which has helped me reduce the drugs I was on to control my autoimmune issues.
This is super interesting! I'd love to discuss in an ME immunity or auto-immune chain. Ill try to find one. Thank you for all this information, I'm new to the ME immunity realm so really looking forward to discussing this . 🙏
 
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Let's start the movement for more comprehensive POTS/dysautonomia testing!
HELP......I gave myself a modified Poor Man's tilt test........

RESULT-

I exhibited narrow pulse pressure during this test of 18 at minute SIX.

then it was 29 at minute EIGHT.

I did not exhibit a big jump in my heart rate (this time, but I have in other readings).

This is potential Congestive Heart Failure?

Anyone care to give me any advice?

Shall I call the litter bearers?