Dysautonomia

A Journey to Healing and Understanding


Karen Urbanek HHP, TNC, HHC and
CEO of Holistic Health Educator

 

 

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Symptoms of Dysautonomia

Treatment for Dysautonomia

The Physics of Dysautonomia

Living with Dysautonomia

Lilly is a Spoonie 📽

You may have noticed a rainbow with a spoon underneath it on Lilly’s sweatshirt.  This is the symbol used by Spoonies around the world. Spoonie is a term used to describe anyone with a chronic illness who suffers from limited amounts of energy.  The spoon theory was created by Christine Miserandino in 2003.  Christine suffered from Lupus and was at a restaurant with a friend when she came up with the idea of using spoons as units of energy. The ‘spoon theory’ was born!  Instead of using the term “chronically ill,” reminding oneself of the fact that they are ill, one with chronic illness can now claim they are a Spoonie.

 

What is Dysautonomia?


Dysautonomia noun: dis-ˌȯt-ə-ˈnō-mē-ə : a disorder of the autonomic nervous system that causes disturbances in all or some autonomic functions and may result from the course of a disease (as diabetes) or from injury*


Autonomic dysregulation is when the normal balance is lost between the sympathetic and parasympathetic systems. Dysautonomia is essentially then, a disorder of the entire autonomic nervous system.  

Our autonomic nervous system (ANS) consists of two parts:

  1. The sympathetic nervous system (SNS) which is known as the fight or flight system and controls the more active responses such as your heart rate, blood pressure and muscle activation.
  2. The parasympathetic nervous systems (PNS) which is known as the rest and digest system and controls the more restful responses such as sleep and digestion.

Regulated body processes affected may include:
▪ Blood pressure
▪ Breathing
▪ Digestion 
▪ Elimination
▪ Heart rate
▪ Kidney function
▪ Bladder control
▪ Pupil dilation / Constriction in the eyes
▪ Sexual function
▪ Body and skin temperature control

Many types of Dysautonomia are genetic. Other triggers to Dysautonomia could include dehydration, stress, tight clothing, alcohol consumption, hot environments, or psychological trauma.

It is often very difficult and can take years to diagnose Dysautonomia. Except for Familial Dysautonomia, most doctors see the presenting conditions as symptoms of other disorders. During our course of testing we found Lilly had many of the following symptoms, yet it was never connected to Dysautonomia.

We learned that symptoms of Dysautonomia can be misunderstood and even misdiagnosed as some of the following:

▪ Postural Orthostatic Tachycardia Syndrome (POTS)
▪ Chronic Fatigue Syndrome (CFS)
▪ Fibromyalgia
▪ Post-Traumatic Stress Disorder (PTSD)
▪ Orthostatic hypotension

 

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From the Author


The main focus of this free document is to help YOU and those you love who are suffering with a form of Dysautonomia. For 4 ½ years as we traveled from doctor to doctor, both in the medical field and holistic field, and did every test and tried every modality of natural healing we could, not one person in our journey even mentioned Dysautonomia.

This document is not only for YOU it is for THEM!  Most doctors have no idea that the symptoms their clients are having could be part of this diagnosis


Lilly's Story  On August 1st of 2015, our youngest daughter Lilly (12 years old at the time), became terribly nauseous on our road trip across the country. The next two weeks of our trip she spent in bed, at hospitals, and in immense pain. She had signs and symptoms of odd nervous system dysfunctions before we left, but we had no idea our journey would not end when we returned home. The journey to understanding her debilitating health issue took five years, hundreds of thousands of dollars, and is compiled into this document.

The emotional journey (in and out of the country!) we have taken is not recorded here, but well deserves another 14 pages. As her mother, I stand amazed at her strength and endurance.

She came close to death two times, the days she could not walk from the bedroom to the kitchen were unnumbered, and her pain was inconsolable and unstoppable.  She lost all but two friends, who both lived far away, as teenagers did not know how to react or respond to her illness. 

She could not attend much of school, school dances, sport activities or functions, and yet, she awoke every day determined. She journaled, studied, tried countless supplements for a wide variety of symptoms, had more tests run on her body that any person I have ever known, and today cannot wait to help other children persevere their health trials. 

The Coca Test For Food Sensitivities 📽

Dr. Coca was the Medical Director of Lederle Laboratories, one of the largest pharmaceutical houses in the world. He is an Honorary president of the American Association of Immunologists and an editor of the Journal of Immunology. He taught at Cornell, Heidelberg, the University of Pennsylvania and the Post Graduate Medical School at Columbia University. He taught delegates from 14 nations the content on the Coca test at the New School for Social Research. And, he left us, the Coca test!

 

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