TABLE OF CONTENTS

Foreword………………………………………………………………………………………………… 1

Acknowledgments………………………………………………….,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, 5

Table of Contents…………………………………………………..,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, 7

Part 1 – POTS and Associated Disorders……………………………………….. 11

POTS Overview……………………………………………………………………………………………………….. 14

Brief History…………………………………………………………………………………………………………….. 16

Classifications of POTS…………………………………………………………………………………………. 19

High / Low Flow………………………………………………………………………………………………………. 19

Developmental POTS…………………………………………………………………………………………….. 20

Deconditioning………………………………………………………………………………………………………… 21

Classification by Primary Symptoms………………………………………………………………….. 21

Who Develops POTS?…………………………………………………………………………………………….. 22

What Causes POTS?……………………………………………………………………………………………….. 22

Statistical Overview of POTS……………………………………………………………………………….. 23

Associated / Related Nervous Disorders……………………………………………………………. 24

Amyloidosis……………………………………………………………………………………………………………… 25

Autoimmune Autonomic Ganglionopathy………………………………………………………. 26

Diabetes……………………………………………………………………………………………………………………. 26

Sjogren’s Syndrome……………………………………………………………………………………………….. 28

Sarcoidosis………………………………………………………………………………………………………………. 29

Lupus………………………………………………………………………………………………………………………… 31

Chiari Malformation……………………………………………………………………………………………… 32

Deconditioning………………………………………………………………………………………………………. 35

Delta Storage Pool Deficiency…………………………………………………………………………….. 35

Ehlers Danlos Syndrome……………………………………………………………………………………… 36

Mononucleosis………………………………………………………………………………………………………. 37

Epstein Barr Virus………………………………………………………………………………………………… 38

Lyme Disease…………………………………………………………………………………………………………. 38

Extra-Pulmonary Mycoplasma Pneumonia…………………………………………………… 39

Hepatitis C…………………………………………………………………………………………………………….. 40

Multiple Sclerosis………………………………………………………………………………………………… 40

Other Conditions…………………………………………………………………………………………………. 42

Part 2 – Signs and Symptoms…………………………………………………………. 43

Diagnostic Testing……………………………………………………………………………………………… 44

Posture Study……………………………………………………………………………………………………… 44

Head Up Tilt Table…………………………………………………………………………………………….. 45

Cardiac Output…………………………………………………………………………………………………… 45

Beat-to-Beat Blood Pressure…………………………………………………………………………… 46

Valsalva Maneuver……………………………………………………………………………………………. 46

Sinus Arrhythmia……………………………………………………………………………………………… 47

Transcranial Doppler………………………………………………………………………………………. 48

Cold Pressor Test……………………………………………………………………………………………… 48

QSART Testing………………………………………………………………………………………………….. 48

Endothelial Function………………………………………………………………………………………. 49

Part 3 – Causes and Treatment…………………………………………………… 51

The Autonomic Nervous System………………………………………………………………….. 51

Dysautonomia…………………………………………………………………………………………………… 52

Effects of Posture on Blood Flow…………………………………………………………………… 53

Specific POTS Case: Patrick’s Story……………………………………………………………… 54

Standard Treatments and Lifestyle Changes…………………………………………….. 55

High Salt Diet……………………………………………………………………………………………………. 56

Fluid Intake…………………………………………………………………………………………………………58

Sleep……………………………………………………………………………………………………………………. 58

Medications………………………………………………………………………………………………………. 59

Exercises for Autonomic Disorders……………………………………………………………… 59

Specific POTS Case: With an Underlying Cause……………………………………….. 65

Specific POTS Case: Jodi Epstein Rhum, Activist…………………………………….. 67

POTS Bloggers…………………………………………………………………………………………………. 67

Part 4 – Living with POTS……………………………………………………………. 73

Working with School Systems……………………………………………………………………… 73

Symptom Management…………………………………………………………………………………. 74

Coping with Hypersensitivies……………………………………………………………………… 75

Scheduling Considerations………………………………………………………………………….. 76

Academic Considerations…………………………………………………………………………….. 77

Academic Performance…………………………………………………………………………………. 77

Physical Education………………………………………………………………………………………… 78

Drills and Emergencies…………………………………………………………………………………. 78

POTS and Insurance……………………………………………………………………………………… 81

POTS and Social Security……………………………………………………………………………. 83

Part 5 – Research and Resources…………………………………………… 85

Ongoing Research, Dr. Philip Low…………………………………………………………….. 85

An Autoimmune Connection?…………………………………………………………………… 87

Vanderbilt Autonomic Dysfunction Center………………………………………….. 89

Other Leading Researchers………………………………………………………………………. 90

Finding a Doctor………………………………………………………………………………………….. 91

Survey of Recent Research……………………………………………………………………….. 92

Part 6 – Medical Definitions………………………………………………… 105

Afterword………………………………………………………………………………….. 111

Relevant Websites…………………………………………………………………… 115

Index……………………………………………………………………………………………. 117