For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Working with your doctor to find out if you have Postural Orthostatic Tachycardia Syndrome

You have become ill and your doctors are completely mystified as to what the condition could be.  You have seen your family doctor and maybe the cardiologist and neurologist too. Your symptoms may include:

  • dizziness upon standing
  • fainting or near-fainting episodes
  • chest pain
  • fatigue
  • rapid heart rate when standing
  • migraines
  • visual disturbances
  • brain fog
  • nerve pain
  • purple feet when standing
  • brain fog (did I say that twice?)
If this sounds familiar, you may indeed have Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance.  Some medical papers report their are over 500,000 people suffering from these conditions in North America.  However, the conditions are not widely recognized by the medical community.  If you think you have POTS or OI here are two medical papers that may help you and your doctors figure out what is wrong.

The first paper is entitled "Autonomic Neuropathy" authored by Arbogast, Miles and Katirji. (thank you to EJ for bringing this to my attention.)  It discusses various conditions which may effect the autonomic nervous system, diagnostic procedures, differential diagnoses and treatments.  Often patients experiencing symptoms of POTS or OI are examined for autonomic dysfunction.

This paper can be found here:  http://emedicine.medscape.com/article/1173756-print

The second paper is simply called "Postural Tachycardia Syndrome (POTS)", authored by Low, Sandroni, Joyner and Shen.  This paper discusses POTS and OI specifically and describes the various flavours of the conditions, evaluation and diagnoses and management.
This paper can be found here: http://www.medscape.com/viewarticle/705183

To help your mystified doctors out, you may want to print out and bring along these papers to your next visit. They could save you a lot of unnecessary tests and grief.

2 comments:

  1. Fab blog. I also have POTS as a result of EDS and various other chronic conditions.

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  2. Hey Elizabeth, do you plan on updating the blog? I'm sure alot of people including myself would love to hear how you are doing! Tried sending you an email a while back, but never heard anything. Are you still doing the exercise? Better? Worse?
    Ashley

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