Taking Dysautonomia with a Pinch of Salt

In this final part of this mini series on all things POTsie, I will try to give some idea of how I self manage. 

 To recap-  I had been diagnosed by a Dr. who had tested my heart, and  had done blood work etc AND was experienced in seeing many patients with this condition.  Yup....I had Dysau...Dystau......Dystort......well, anyway....I had this ...er ...problem, and aside from learning to spell the wretched thing, I was going to have to learn how to manage, because, as usual, there was not going to be a magic cure on the horizon.


So this is my list of things to keep in mind, if I want to make the  ' the fainty- wobbly-sicky-horizontal-experience'  less likely:
THINGS THAT MAKE DYSAUTAUNOMIA WORSE:
  • Becoming dehydrated
  • Ignoring hunger pangs
  • Stress
  • ME flare-up ( be on alert that this makes 'a sag to the floor' far more likely)
  • Any activity that makes my heart beat faster.
  • Sitting upright when my body is begging me to rest flat ( with legs raised)
  • Hoping if I didn't plan for it, it wouldn't happen....yup, that REALLY doesn't help!
  • Being on my feet for too long
  • Knowing what 'too long on my feet' constitutes  for me
  • Not eating every 3 hours at least
  • Not lying down when I need to NO MATTER WHERE I AM! ( GP surgery waiting room, church, people's carpets)
Picasso's big- boobed model woke up lying on top of one of his sketchbooks...wondering what happened. Notice how Dysautonomia affected her vision.

OK...so what does help me?
  • ELECTROLYTE TAKEN TWICE DAILY WITH A 1/4 TEASPOON OF SUGAR ADDED.
  • DRINKING A LOT OF WATER 
  • EATING PROTEIN THROUGHOUT THE DAY and at the first sign of symptoms.
  • TAKING SPECIAL CARE IN THE HEAT-lying down even more often than usual, remaining mindful of how I am feeling at all times.
  • CAFFEINE... IN CASE OF BEING AWAY FROM HOME AND  FEELING WOBBLY- a strong tea can pep me up enough to cope in the very short term.
  • BEING PREPARED TO LIE DOWN IN UNLIKELY PLACES at the first sign of a problem.
  • WEARING A MEDICAL ALERT BRACELET- So that if I do faint in public, hopefully the ambulance men will read what is wrong with me.
  • EXPLAINING TO YOUR CARER/SPOUSE ETC WHAT IS GOING ON. BEFORE ANY MEDICAL OR DENTAL PROCEDURE, ALWAYS ALERT THE PRACTITIONER AND TELL THEM WHAT TO DO IF YOU START FAINTING.
  • BEING AWARE OF EARLY WARNING SIGNS and things likely to overexcite my nervous system: e.g stress, excitement, lack of sleep, high pain levels, hot weather.
  • MAKING CONSCIOUS EFFORTS TO RELAX MY NERVOUS SYSTEMS (essential oils, meditation, Bach flower remedies, drawing, journaling etc.)

All these actions do not make the condition disappear, but they do give me some measure of control...which is infinitely preferable to not knowing what in the name of swooning....was going on......and more importantly give me peace of mind.






f you have read these Blogs and thought : ' Hey, that sounds like me! Maybe I have  Dysautonomia....?

Before doing anything else, you need to see your medical practitioner, and have them rule out other causes of these symptoms and to confirm the likelihood of Orthostatic Intolerance.. SELF DIAGNOSIS IS NOT A HEALTHY CHOICE!


For more info on diagnosis and self management in the bizzare world of Dysautonomia:




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