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10 Facts About Postural Orthostatic Tachycardia Syndrome (POTS) for Dysautonomia Awareness Month
October is Dysautonomia Awareness Month in the United States and around the world. Information for this article was found on the Dysautonomia International website. They are the leading advocacy group for this condition. Dysautonomia is an umbrella term that encompasses many different diseases, conditions and syndromes, including POTS.
How Common is POTS?
Imagine if everyone in a city the size of Chicago suddenly got sick. That’s how many people have POTS in the United States. Despite the prevalence of POTS it receives a fraction of the funding for research as other diseases with similar occurrence rates such as multiple sclerosis. Current per patient funding for research is about ten cents per person annually.
POTS is a predominately female problem
Like many other predominately female conditions, funding for medical research is low. Investment in treatment or cures is largely the result of an awareness army.
POTS impacts every aspect of daily life
Many POTS patients require wheelchairs or other assistance devices in order to travel, work, or attend school. But they don’t always need them. This can create a lot of confusion for able-bodied friends. Chronic fatigue, digestive issues, headaches, dizziness upon standing and chest pain can all impact a Chargie with a dysautonomia’s ability to succeed in life.
Diagnosis Delays
Awareness campaigns have helped decrease the average diagnosis time from six years to four years. This time is still too long. During the time that patients wait, there are expensive and invasive tests, doubts, experimental and holistic options, and psychological conditions to handle. At least half of patients surveyed were told at some point that their symptoms were psychosomatic. Incorrect therapies can prove dangerous and many patients get worse during the delay.
POTS may have a genetic component
Heredity seems to be a factor in some, but not all patients with POTS. It’s possible a genetic predisposition combined with another factor such as infection or trauma creates the environment for dysfunction of the autonomic nervous system to occur.
Limited Treatment Options
There are pharmaceuticals for symptom management and some relatively new drugs being used off label now. Mayo Clinic and others recommend an integrative approach. Natural approaches and lifestyle management can be very effective in treating POTS. Exercise and a high salt diet are widely regarded as the baseline for beginning recovery. For one patient, diagnosed at 13 after three years of searching for answers, it has taken four years of physical therapy to rebuild her stamina. Even after two intensive rehab programs she feels she has reached between 25% and 50% of quality of life compared to her peers and her individual goals.
Debatable Prognosis
The Mayo Clinic is the only organization that has evidence based research results of follow up prognosis. The results are based only on surveys that were returned to the hospital after patients attended a recovery program. More research is needed to get accurate prognosis statistics so patients and their families can plan ahead.
Learn more about POTS from Dysautonomia International. If you think you or a family member may have POTS their website has resources you can print to take to your health care providers. You can find Dysautonomia Awareness gear in the shop here.
T.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday. She is the mother of Katie Madden, a POTSIE.
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