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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Latest Issue of Dysautonomia News

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne


Thanks Sushi,

I just got sent this abstract of a new is paper on POTS from Mayo clinic

Postural tachycardia syndrome: a heterogeneous and multifactorial disorder.
Benarroch EE.
Source
Department of Neurology, Mayo Clinic, Rochester, MN 55905, USA. benarroch.eduardo@mayo.edu

Abstract
... Postural tachycardia syndrome (POTS) is defined by a heart rate increment of 30 beats/min or more within 10 minutes of standing or head-up tilt in the absence of orthostatic hypotension; the standing heart rate is often 120 beats/min or higher. POTS manifests with symptoms of cerebral hypoperfusion and excessive sympathoexcitation. The pathophysiology of POTS is heterogeneous and includes impaired sympathetically mediated vasoconstriction, excessive sympathetic drive, volume dysregulation, and deconditioning. POTS is frequently included in the differential diagnosis of chronic unexplained symptoms, such as inappropriate sinus tachycardia, chronic fatigue, chronic dizziness, or unexplained spells in otherwise healthy young individuals. Many patients with POTS also report symptoms not attributable to orthostatic intolerance, including those of functional gastrointestinal or bladder disorders, chronic headache, fibromyalgia, and sleep disturbances. In many of these cases, cognitive and behavioral factors, somatic hypervigilance associated with anxiety, depression, and behavioral amplification contribute to symptom chronicity. The aims of evaluation in patients with POTS are to exclude cardiac causes of inappropriate tachycardia; elucidate, if possible, the most likely pathophysiologic basis of postural intolerance; assess for the presence of treatable autonomic neuropathies; exclude endocrine causes of a hyperadrenergic state; evaluate for cardiovascular deconditioning; and determine the contribution of emotional and behavioral factors to the patient's symptoms. Management of POTS includes avoidance of precipitating factors, volume expansion, physical countermaneuvers, exercise training, pharmacotherapy (fludrocortisone, midodrine, β-blockers, and/or pyridostigmine), and behavioral-cognitive therapy. A literature search of PubMed for articles published from January 1, 1990, to June 15, 2012, was performed using the following terms (or combination of terms): POTS; postural tachycardia syndrome, orthostatic; orthostatic; syncope; sympathetic; baroreceptors; vestibulosympathetic; hypovolemia; visceral pain; chronic fatigue; deconditioning; headache; Chiari malformation; Ehlers-Danlos; emotion; amygdala; insula; anterior cingulate; periaqueductal gray; fludrocortisone; midodrine; propranolol; β-adrenergic; and pyridostigmine. Studies were limited to those published in English. Other articles were identified from bibliographies of the retrieved articles.
Copyright © 2012 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Re: New research paper on POTS from Mayo clinic
Postural tachycardia syndrome: a heterogeneous and multifactorial disorder.
<snip>
Many patients with POTS also report symptoms not attributable to orthostatic intolerance, including those of functional gastrointestinal or bladder disorders, chronic headache, fibromyalgia, and sleep disturbances. [emphasis mine]

That's strange. Several of the symptoms that the Mayo Clinic claims are "not attributable to orthostatic intolerance" have been included in different symptom lists I've seen for Orthostatic Intolerance. Several experts on Orthostatic Intolerance do think these symptoms can be caused by OI in many cases.

For example, the article at medscape.com (see link below) includes Nausea, Headache, and Sleep problems on its list of symptoms:

http://emedicine.medscape.com/article/902155-overview#aw2aab6b3

For convenience I've cut/pasted that symptom list (and highlighted three symptoms):
Chronic Orthostatic Intolerance
In chronic orthostatic intolerance, patients are ill on a day-to-day basis. Chronic orthostatic intolerance may be confused with syncope because chronic illness is sometimes punctuated by acute syncopal episodes. However, this is unusual during real life (albeit common during artificial testing environments), and the author's work suggests no increase in the incidence of syncope above that in the general population. The physician should rely on the patient's history to determine whether chronic illness is present. Thus, chronic orthostatic intolerance is defined by a history of symptoms of orthostatic intolerance present on a day-to-day basis. Defining symptoms of chronic orthostatic intolerance include dizziness in all patients, with high incidence of the following conditions:
  • Altered vision (blurred, "white outs", "black outs")
  • Fatigue
  • Exercise intolerance (frequently post-exercise malaise)
  • Nausea
  • Neurocognitive deficits
  • Sleep problems
  • Heat
  • Palpitations
A large proportion of patients also experience the following symptoms:
  • Headache
  • Tremulousness
  • Difficulty breathing or swallowing
  • Sweating
  • Pallor
  • Other vasomotor symptoms
These symptoms are divisible into symptoms of sympathetic activation and symptoms of reduced cerebral blood flow.

Why is the Mayo Clinic study claiming that these symptoms cannot possibly be caused by this disorder? :confused:

Of course, these symptoms might be caused by something else. And perhaps they are sometimes made worse by hypervigilance. But it seems a bit dismissive to say that these symptoms are never caused by OI when experts in the field have stated otherwise.

So, what's going on here?

Oh, right. I see that Valentijn has figured it out and posted a much shorter version of my response. Some doctors just assume it's all anxiety and/or depression. How could l have forgotten? :rolleyes:
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Many patients with POTS also report symptoms not attributable to orthostatic intolerance, including those of functional gastrointestinal or bladder disorders,

As far as Im aware POTS is a kind of dysautonomia (issue with autonomic dysfunction). The autonomic system controls so many other areas in our body too not just the heart.. including our bowel peristalisis. Seems Mayo once again (they are bad with ME/CFS too) is well and truely niave and dont have a clue what they are on about.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Yes good points everyone - thanks .
Thanks god that geneticists and others in senior medicla posisitons are now taking it as the serious physical illness it is in all its many manifsestations - as you would expect from something genetic affecting the connective tissue !.

Here's another reference I have not read yet.

A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility Syndrome [Illustrated]
Isobel KnightHYPERLINK \l ""

Isobel Knight (Author)

http://www.amazon.co.uk/dp/1848190808/ref=tsm_1_fb_lk

i dislike the name hypermobility syndrome however as it is now known tht many with EDS 3 are not hypermoblie - though many are
 

ramakentesh

Senior Member
Messages
534
The newsletter gives the recent discovery of epigenetic gene silencing in POTS a good run - with both Dr Raj and Dr Stewart commenting on it.

the Mayo article is ridiculous. It details primary physiological mechanisms and then tries - with zero evidence - to suggest that somatic hypervigilence and psychosomatic factors sustain the illness. That in itself is contradictory.

It is utterly ridiculous to suggest an illness has a variety of primary physiological mechanisms and then try and argue that chronicity of symptoms is sustained by psychological factors. its like saying MS patients sustain their illness in the same fashion.
 

ramakentesh

Senior Member
Messages
534
Unless ofcourse the author is suggesting that these physiological mechanisms are false. But they have some peer-reviewed evidence, the argument for the psychological line has none and is primarily based on work conducted on children where they argued that parents of children with POTS who bought into the physiological nature of the childs illness were worse off.
So in other words, having parents tell you its all in your head and you can function fine results in better outcomes. I feel sorry for the children.
My response to any doctor who told me that would be for that doctor to consume a dose of Robexotine and then do a tilt table test and when they develop a POTS like phenotype I will ask them whether its all in their head...
In past times medicine suggested that many illnesses were pshyciological. Even MS and diabetes.