You have what?

A number of conditions are forms of dysautonomia: postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), vasovagal syncope,pure autonomic failure, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), orthostatic hypotension, orthostatic hypertension, autonomic instability, and a number of lesser-known disorders such as cerebral salt-wasting syndrome. Dysautonomia may occur as the result of other diseases, such as diabetes mellitus, multiple system atrophy (Shy-Drager syndrome), Guillain-Barré syndrome and a number of other conditions that may affect the nervous system.


The above is a direct copy from wikipedia regarding dysautonomia. The quality of life and prognosis varies greatly dependent upon each person's diagnosis.

What these definitions never convey is the reality of living with such a diagnosis. I learned long ago that after checking the "respectable" teaching hospital websites for symptoms, treatments and prognosis of illness, the way to get the real picture of any illness was to become a lurker on a forum for patients and caregivers of that illness. This is where the true picture emerges and not only can you get tons of support, but it is an invaluable tool for information of all kinds.






I would love to credit someone with the above image but I have no idea where I found it.


My diagnosis include postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), and then just for fun add borderline long QT syndrome, myofascial pain syndrome, and fibromyalgia. I have also had a host of mysterious neurological symptoms surface within the last three years which do not seem to fit with my present diagnosis but do fit with other forms of dysautonomia. 
Lots of money, lots of test, lots of time later I have a slew of illnesses which have no cure and very little in the form of treatment. The drugs traditionally used to treat low blood pressure that seem to work well for others make me very ill. Being the proactive and independent girl that I am, I have devised my own way of coping, which works pretty well until it doesn't.

Please join me on this crazy, mixed up, amazing journey we call life. Who knows where it will lead?