DYSAUTONOMIA

WHAT IS DYSAUTONOMIA?

Dysautonomia is not a diagnosis. It is a general term used to describe any disorder of the autonomic (or automatic nervous) system. These disorders usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others. Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and especially community-based physicians.

Dysautonomias are classified as any kind of dysfunctions of the autonomic nervous systems. The dysfunction can be primary or can be a secondary condition associated with another disease process happening. The autonomic nervous system is the part of the nervous system that regulates functions that happen automatically or that you don’t have to think about like BP regulation (especially changing from a supine to a standing posture), blinking and pupil dilation, brain fog, digestion, excretion, heart rate, neuropathies, sensory hypersensitivities, and sweating and temperature regulation. These dysfunctions can be mild for some, or disabling and/or even life-threatening. The most important challenge is to find a local doctor who is educated on Dysautonomias, or is willing to become educated in order to channel the patient to the right doctor or facility for the best treatment options that are currently available. There is no cure, but underlying conditions need to be diagnosed and the symptoms from the Dysautonomias have to be managed.

THE DYSAUTONOMIA PROJECT

WHAT IS THE DYSAUTONOMIA PROJECT?

The Dysautonomia Project is a not-for-profit collaborative effort of hundreds of community leaders, patients, and volunteer physicians. The aim is to bridge the wide knowledge gap between community-based physicians and decades of validated clinical research about Dysautonomia.

The mission is to create awareness and raise funds for education of the general population, healthcare providers, and the medical community about Dysautonomia. The vision is to reduce the time to diagnosis by providing education about Dysautonomia for community-based patients, physicians, and others through CME’s, the official book, and other educational offerings.

Education is the heart of the mission and the number one treatment. Through the award-winning book: The Dysautonomia Project, thousands of patients and their families have been educated and validated. Doctors are receiving vital information not covered in medical schools, enabling them to diagnose and treat patients.

WHAT ARE THE SIGNS AND SYMPTOMS OF DYSAUTONOMIA?

  1. Brain Fog Or Mental Clouding
  2. Chest Discomfort Or Palpitations
  3. Difficulty Breathing Or Shortness Of Breath
  4. Difficulty Standing Still
  5. Fatigue
  6. Lightheadedness
  7. Nausea & Other GI Symptoms

WHAT ARE THE COMMON COEXISITING CONDITIONS?

  Autoimmunity (AAG or Autoimmune Autonomic Ganglionopathy, Autoimmune Encephalopathy, Celiac Disease, Erythematosus, Guillian-Barre’s Syndrome, Paraneoplastic Autonomic Neuropathy, Sjogrens, Systemic Lupus)
  Chronic Regional Pain Syndrome
  Diabetes
  Ehlers-Danos Syndrome
  Mast Cell Activation Syndrome
  Small Fiber Neuropathy

WHAT ARE THE STATISTICS ASSOCIATED WITH DYSAUTONOMIA?

There are at least 15 distinct Dysautonomias; the most common are Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome (POTS). Please find below some quick facts concerning Dysautonomia:

  Many dysautonomias often go undiagnosed or misdiagnosed.
  Postural orthostatic tachycardia syndrome (POTS) and Neurocardiogenic syncope and are the most common of dysautonomias.
  The effects of dysautonomias may range from lightheadedness to premature death.
  There are some researchers whom believe POTS may be an autoimmune condition.

The Mayo Clinic assesses autonomic severity based on six categories called the “Compass 31”:

  1. Bladder Function
  2. Gastrointestinal Disturbances
  3. Orthostatic Intolerance
  4. Pupils Motor Function
  5. Secrets Motor Regulation
  6. Vasomotor Functioning

WHAT TYPE OF AUTONOMIC FUNCTION TESTING CAN BE DONE?

  Antibody Testing
  Blood Volume Testing
  Catacholomine Tests
  Heart Rate Variability
  QSART (Quantitative Sudomotor Axon Reflex Test)
  Skin Biopsies
  The Cold Pressor Test
  The Valsalva Maneuver
  Tilt Table Test

WHAT CAN I DO TO MANAGE AUTONOMIC DYSFUNCTION?

  Alcohol and energy drinks should be avoided.
  Compression garments i.e. abdominal binder, compression hose, compression sleeves during activities, not at rest.
  Contracting the thighs, elevating the legs while sitting, gluteals, purchasing a seat cane if standing is difficult, sitting cross-legged, sleeping with the head elevated approximately 50 degrees, using a shower chair vs standing, etc.
  Diet and Supplements; eating frequent, small meals limiting artificial dyes and chemicals, body posturing, carbohydrates, counter maneuvers, highly processed foods, and sugar to keep the blood from pooling down into the feet and legs.
  Exercise
  Increased sodium intake and water to maintain electrolyte balance and fluid levels per MD recommendation and stay hydrated, avoiding pain and stress.

WHAT KIND OF PHARMACOLOGICAL TREATMENTS CAN I TRY?

  Amphetamines Or Methyphenidate
  Benzodiazepines
  Beta Blockers
  Clonidine
  Droxidopa
  Fludrocortisone
  IV Saline
  Midodrine
  SSRIs (Selective Seratonin Re-Uptake Inhibitors)
  Yohimbine

DYSAUTONOMIA DISCUSSION

Dr. Andreas Grossgold and Mark Washco discuss the advances in diagnosing and caring for patients living with Dysautonomia.

IMPORTANT! All information presented in this website is intended for informational purposes only and not for the purpose of rendering medical advice. Statements made on this website have not been evaluated by the Food and Drug Administration. The information contained herein is not intended to diagnose, treat, cure or prevent any disease.