Dysautonomia

Dysautonomia is a general term used to describe any disease or malfunction of the autonomic nervous system (POTS, mitral valve prolapse dysautonomia, neurally mediated hypotension, IBS, etc). It is associated with Ehlers Danlos Syndrome, although the reasons are not fully understood (which is the case for most disorders and/or symptoms connected to EDS).

Symptoms are numerous and vary widely from person to person.
-Fatigue
-Excessive thirst
-lightheadedness, dizziness, or vertigo
-Feelings of anxiety or panic
-Rapid or slow heart rate
-Orthostatic hypotension-sometimes resulting in syncope (fainting)

Other symptoms frequently associated include: headaches, visual disturbances, salt cravings, nausea, numbness, nerve pain, chest pains, and difficult breathing.

* How this relates to me:
Following my surgeries last year I started experiencing pre-syncope (pre-fainting) episodes, chest pains, difficulty breathing, slow heart rate, and it was determined that I have Orthostatic hypotension and potentially (although not confirmed) neurally mediated hypotension. I also have IBS and major salt cravings--I put salt on everything. I saw a cardiologist to rule out any heart complications, as they can be seen with EDS, and thankfully my heart looks normal. Dysautonomia explains just about every random/strange symptom I have--that EDS doesn't already cover.

Medical terminology breakdown:
*Hypotension: low blood pressure

Orthostatic hypotension- (also known as postural hypotension) is a form of hypotension in which a person's blood pressure suddenly falls when the person stands up. It may be most pronounced after a period of prolonged rest or inactivity, typically in the supine position-laying flat.

Neurally mediated hypotension/syncope- (also known as vasovagal syncope) is a form of hypotension in which a person's blood pressure drops when a patient is in an upright position for an extended amount of time (faulty brain signals).

POTS (Postural Orthostatic Tachycardia Syndrome)- is a condition of dysautonomia, in which a change from supine position to an upright position causes an abnormally large increase in heart rate (tachycardia).


Mitral valve prolapse- is a heart problem in which the valve that separates the upper and lower chambers of the left side of the heart does not close properly. The mitral valve helps blood on the left side of the heart flow in one direction. It closes to keep blood from moving backwards when the heart beats (contracts). MVP is seen often in EDS patients!

IBS (Irritable Bowel Syndrome)- refers to a disorder that involves abdominal pain and cramping, as well as changes in bowel movements. It is not the same as inflammatory bowel disease (IBD), which includes Crohn's disease and ulverative colitis.

*For more information please visit the National Dysautonomia Research Foundation's website (click here)