Saturday, 16 August 2014

POTS (postural orthostatic tachycardia syndrome).

I see the Daily Mail ran a story recently saying that POTS could be the 'cause' for 1 in 3 people with CFS. Having heard the woman who heads the research team at Newcastle university talk a couple of years ago I remember thinking at the time she is never going to work out the neurology of this because she's too narrow in her focus. She spent the first 20 mins of the talk (to University Researchers) justifying that CFS is a real disease and not just malingering (presumably the medics that she normally lectures to have that belief). Then when she got to the heart of her presentation and described how they put people on a 'tilt' table to measure their responses (this apparently is how they diagnose it). sounded barbaric and very unpleasant! However, my main bone of contention and one that has been repeated by the Daily Mail is that this is somehow the 'cause' of CFS when clearly it is just another result of autonomic dysregulation (mediated by the limbic system). A client of mine has pointed me to a training programme called DNRS (Dynamic Neural Retraining System) which she uses - I noted they had an article on POTS too. They say;
Symptoms can include but are not limited to:
  • Increase in heart rate, dizziness, fainting, headache, sweating, shakiness, nausea -  mostly worse with standing
  • Poor concentration and memory
  • Discoloured hands and feet
  • Sense of anxiety
  • Chest pains
  • Nerve pain
  • Hyperacusis (sensitivity to noise)
  • Photophobia (pain/relapse on exposure to light)
  • Changes in taste and smell
I can remember having most of these symptoms when I was ill 15 years ago - however, no-one seemed to be able to link all of these symptoms - they were all treated separately. The first thing I was given was tablets for the dizziness which made no difference at all. However, had I been diagnosed with CFS or POTS for that matter it wouldn't have helped as it is still a descriptive diagnosis of exclusion (i.e we don't know what it is but it's not something neurological/structural, it's characterised by these things so we'll call it CFS/POTS, etc). So, given a diagnosis like that people are left to manage the symptoms with no idea that the limbic system controls all of these things and that ongoing subconscious stress is triggering the limbic system into sympathetic dominance or vagal freeze. Without understanding what is behind it all people are left powerless and controlled by a medical system that then feeds them expensive drugs and surgery as the answer. It would be quite criminal if it wasn't legal...

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