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Frequently Asked Questions-Help Yourself To Answers

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The top section of this post includes many of my personal links--as requested by some members, I've placed them here in one "self serve" location. At the bottom, I have cut links to the site Michelle Sawicki has put together with all the info on POTS and related disorders on the primary site for DINET (http://www.dinet.org). And, at the very bottom, you will find a list of the most commonly used abbreviations on the forum their definitions.
In general, I try to post links that are from highly reliable sources, such as from an established medical journal (JAMA, Lancet, etc.), university, research facility (NIH, NINDS, etc.). I tend to avoid posting personal webpages unless they are well researched and contain listed references to solid resources.
Sources for finding a knowledgeable physician
NDRF's Physician Listings

Free PDF download of a "Handbook of Dysautonomias"
NDRF Handbook On Dysautonmias

Sources for *RELIABLE* information on Dysautonomia
Arlicles and Links from DINET's main website
Search engine for medical and journal arictles
Place to check if a treatment you've heard about is dangerous or just plain quackery

Clincical Trials at NIH (United States) for Dysautonomia

NIH Clinical Trials

Explanation of Tilt Table Test
Merck Manual's explanation of the Tilt Table Test (ttt)

American Family Physician's Article on Orthostatic Hypotension
AFP's article

Description of Autonomic Dysfunction
Vanderbilt-description of Autonomic Dysfunction

US National Institutes for Health-info sheets on orthostatic hypotension, dysautonmia and familial dysautonmia
Orthostatic Hypotension
Hereditary Dysautonomia
Postural Orthostatic Tachycardia

Sites with information on disability advocacy, disability law, getting through the process of applying for disability benefits
Disability Secrets Site
US Government's publication on disability
Fibromyalgia organization's disability information
Disability Facts site
Disinissues group on Yahoo
CFID's disability issues
American's with Disabilities Act Home page

NIH info sheet on mastocytosis, a histamine disorder:

MERCK Manual Chapter on Low Blood Presure

What causes hypotension?

Gastroparesis information and GI motility or dysmotility issues

Orthostatic Hypotension & Stroke Risk:

Information on Ehlers-Danlos

What's the Difference between Shy Drager & Pure Autonomic Failure?

Center for Pediatric Hypotension

Children's Heart Institute

An article on an autoimmune cause of dysautonmia (Autoantibodies to ganglionic acetylcholine receptors)

Invisible Disabilities and Advocacy

Nervous system descriptions/pictures

Spinal Stenosis Links:

Info on Fraudulent Treatments


Overview of POTS


Mechanisms (what is happening with your body while you're symptomatic)

Causes of POTS

Detection of POTS and other autonomic dysfuctions

Treatments (what helps)

What to Avoid (what makes things worse)


What does the research have to say

Related links

The following is a list of common abbreviations you are likely to see used here on the forum. Thank you to Briarrose (Steph) for her input on this project.

ADD - Attention Deficit Syndrome
ADHD - Attention Deficit Hyperactivity Disorder
BB - Beta-blocker
Brady - Bradycardia, a slowing of the heart rate
BP - Blood pressure
CAT scan - Computed Axial Tomography
CFIDS - Chronic Fatigue Immune Dysfunction Syndrome
CFS - Chronic Fatigue Syndrome
CNP - Certified Nurse Practioner
CP - Chest Pain
CVS - Cyclic Vomiting Syndrome
DX - Diagnosis
EDS Ehlers-Danlos Syndrome
ENT - Ear, nose & throat doctor
EEG - electroencephalogram, a type of brain wave scan
ECG/EKG - electrocardiogram, a scan of the heart's elecrtrical activity
Endo - sometimes used to refer to "endocrinologist", a type of doctor
and sometimes used to refer to endometriosis, a gynecologic problem
EP Cardio - Electrophysiologist Cardiologist (specializes in the electrical function of the heart)
FM or Firbro - Fibromyalgia
GERD - Gastroesophageal Reflux Disease
GI - Gastro-Intestinal
GP - General Practioner
Holter - a type of heart rate monitoring, or cardiac event recorder
HR - Heart Rate
HTN - Hypertension
HX - History
IBD - Inflamatory Bowel Disease
IBS - Irritable Bowel Syndrome
IST - Inappropriate Sinus Tachycardia
IV - Intravenous
LLD - Lyme Literate Doctor
LUQ - Left upper quadrant (of your body, usually used when referring to a location of pain)
ME - Myalgic Encephalopathy, a synonym for Chronic Fatigue Syndrome
MD - Doctor
Mito - Mitochondrial disorder
MRI - Magnetic Resonance Imaging
MSA - Multiple System Atrophy, Shy-Drager Syndrome
MVP - Mitral Valve Prolapse
MVPS - Mitral Valve Prolapse Syndrome
NCS - NeuroCardiogenic Syncope
Nephro - Nephrologist (kidney specialist, often specializing in hypertension/hypotenstion)
Neuro - Neurologist or Neurology Specialist
NMH - Neurally Mediated Hypotension
NP - Nurse Pracitioner
OH - Orthostatic Hypotension
OI - Orthostatic Intolerance
OT- Occupational Therapy
OTC - Over-the-counter medications
PACs - Premature Atrial Contractions
PAF - Pure Autonomic Failure
PCP - Personal Care Physician
PET scan - Positron Emission Tomography
POHS - Postural orthostatic hypotension syndrome
POTS - Positional Orthostatic Tachycardia Syndrome or Postural Tachycardia Syndrome
PSVT - Paroxysmal Supraventricular Tachycardia
PT- Physical therapy
PVCs - Premature Ventricular Contractions
PVD - Peripheral Vascular Disease
RUQ - Right upper quadrant (of your body, usually used when referring to a location of pain)
RX - Prescription or Prescription medication
SOB - Short of Breath
SSRI - Selective Serotonin Reuptake Inhibitor
SVT - Supraventricular Tachycardia
SX - Symptoms
Tachy - Tachycardia, a fast heart rate
TIA - Transient Ischemic Attack (aka mini-stroke)
TMJ - Temporomandibular Joint Dysfunction
TTT - Tilt Table Test
TX - Treatment
UC - Ulcerative Colitis

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