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

Five Stages of POTS and OI

My recent relapse (entirely due to neglecting my exercises) has given me some time to ponder the various stages of POTS and OI.  For example: I was in Stage I, thanks to Dr. Levine's exercise protocol, until the Sausage Incident.  After the Sausage (A.S.), and from neglecting my exercises, I progressed from Stage I to Stage III/ IV in three months.  

This is my own description of the Stages and they may be very different for you.  I would really like to hear from anyone who has something to add or who would like to comment on the Stages as I have them outlined here.

Why do I want to describe the severity of POTS and OI symptoms in terms of Stages?  It's just easier to say "I am in Stage III" as apposed to "Jeepers!! I feel dizzy and unsteady, exhausted and my feet hurt too from the blood pooling." 

5 Stages of Postural Orthostatic Tachycardia or Orthostatic Intolerance
Stage I
Dizziness during follicular phase, when fatigued or in extreme heat.
Stage II
Dizziness or difficulty standing during follicular phase, when fatigued, in extreme heat or during periods of prolonged standing, blood pooling "pink feet",cognitive difficulties.
Stage III
Frequent dizziness, significant difficulty with standing for prolonged periods, fatigue upon exertion, blood pooling, cognitive difficulties.
Stage IV
Dizziness and difficulty standing for short periods, chest pain, cognitive problems,  blood pooling,  fatigue upon exertion, occasional migraine.
Stage V
Inability to stand, nerve pain, frequent migraines, visual disturbences, "autonomic storms", cognitive problems, frequent chest pain, severe fatigue.

6 comments:

  1. I think this is great and am thinking of printing this up and handing this out to my family members and friends. They are always asking me or my husband "How is Ashley doing?" and it can be hard to answer. I am doing better, but at times I think people associate "better" with functiong normal or "cured" which is obviously not the case. I am definitely somewhere in between, not bed bound but not normal. :) Thanks for the idea!!

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  2. Thank you for this. I love it! And thank you for this web page. It is such and inspiration for me!!

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  3. Thanks Melissa and thanks too Ashley! I think I will post the chart on the fridge to serve as backup for when I don't want to do the dishes: "See I am in Stage III - which means I can't do dishes"
    Oops...I forgot to add that to the chart ;-)

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  4. Hi Elizabeth. I was just reviewing your blog to try to find a "rough outline" for the Levine protocol. (where could I find that?) Also, I was wondering what you meant by follicular phase in your stages? As in, menstruation?

    Emily CB

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  5. This is a great way of sharing how you are felling as I am sure you are aware most people do not understand and look at you like your crazy, sometimes I wish they could feel what you can. Ashley I totally agree with you that if you say you are well people think you are cured.

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