Episodic POTS

Jonathan Edwards

Jonathan Edwards

Senior Member (Voting Rights)
This Guardian article
www.theguardian.com

The pet I’ll never forget: Mae the labrador, who keeps me safe with her keen nose and piercing stare

Before getting her, I would fall, injure myself and then wake up alone. I’ve trained Mae to be a medical alert dog and she has helped me to embrace life again
www.theguardian.com www.theguardian.com

raises some interesting questions.

The suggestion is that in people with what one might call "episodic POTS" there is some form of autonomic prodrome that alters body odour, presumably through sweat. How this works is unclear but there is evidence for Parkinson's disease being associated with a particular odour and there are several disorders in which autonomic features, including sweating, overlap with CNS changes.

If there is a prodrome, it sounds a bit like migraine, although for migraine the prodrome can last days.

As far as I can gather, this sort of episodic POTS is quite different from the sort of orthostatic tachycardia that might be picked up on a tilt table test. (I have met it before in another context.) The person is going around quite happily and then suddenly gets an "attack" of tachycardia and collapses. It seems quite distinct from the ME/CFS picture.

This is one of the reasons why I am still unconvinced that POTS is a helpful term. It seems to cover quite different things and is also potentially used for OI that is likely unrelated to any of them.

The history given in the article is a bit confusing but that is nothing new in this field.
 
Jonathan Edwards said:
The person is going around quite happily and then suddenly gets an "attack" of tachycardia and collapses. It seems quite distinct from the ME/CFS picture.
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That was sort if what it was like for me at first. I had a few incidents where I’d hit a wall, get these attacks and chest pains and recover. Sort off. After time. And it still fluctuates but I’m never free from the effects.

I agree POTS isn’t the right word. I have effects of OI even without tachycardia.
 
They say:
To date we have trained dogs to assist with medical conditions such as:

  • PoTS and other cardiac arrythmia’s
  • Addison’s disease and other types of adrenal insufficiency
  • MCAS (Mast Cell Activation Syndrome)
  • Non-epileptic seizures
  • Low blood glucose levels
  • Severe allergies
There are publications on detecting cancers and diabetes but there does not seem to be anything on the conditions we usually discuss.
 
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I don't think it's particularly interesting. I suspect that the POTS behaves like this: the system becomes tired after a while and less able to compensate for upright posture. When compensation fails, the unpleasant symptoms appear.

It is episodic because all sorts of factors play into this that influence how much "work" the system must do to compensate and how deep its reserves are. The sum of these effects an be quite variable and only when it crosses a threshold does an episode occur.

The dog has learned to recognise when the system is stressed and about to fail.
 
apart from the article I do have times where I meet the criteria for the NASA lean test and other times where my standing heart rate doesn’t meet the requirered threshold of points.

so I’m always wondering if I have POTS- or if I don’t. Problems with OI for sure.

but it’s not “attack like” and more 3 months I have POTS and then 3 months I don’t
 
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