Jane S.
Age: 57
Diagnosis: POTS, Orthostatic Hypotension and Acute Postural Autonomic Nervous System Dysfunction
Other Conditions: Cerebellar Ataxia, Headaches, Hypercholesterolemia, Hyperkinetic Circulation, Hypogammaglobulinemia, Hypopituitarism, Hypothyroid, Hypovolemia, IBS, Mesangial Proliferative Glomerulonephritis, Muscle Atrophy, Neurological Hearing Loss, Progressive Small Fiber Neuropathy, Overactive Bladder, Peripheral Neuropathy, Proteinuria and Supraventricular Tachycardia.
What was your journey to getting a diagnosis like?
It took an unbelievable amount of time to diagnose POTS, 18 years. I started having chronic unrelenting tachycardia in 1986 and was not diagnosed with POTS until 2004.
What is your biggest struggle with Dysautonomia?
Having chronic health problems for over 25 years the biggest struggle in my daily life has changed as the diseases progress and I get older. Even now what is difficult today may be different than what is difficult tomorrow.
Is there a Dysautonomia success story you would like to share?
I was too ill to attend classes so I found an online school to fulfill my desire to become a Web Designer. But I feel I have lead a very successful life when I look back at what I have done and accomplished.
What are your top three treatments that help you function daily?
Diet, daily routine and cooling vest.
Who has inspired you most on your journey? Why?
I find inspiration in the words and quotes of many but not any one actual person.
What would you like to say to the public at large about your situation and Dysautonomia?
Do not even try to guess how I feel or what my life is has been like or what it will be link in the future.
What advice would you give to a newly diagnosed patient?
Medical record keeping and educating yourself about your health problems will prove invaluable through the years.