People living with dysautonomia have malfunctioning autonomic nervous systems, which can result in a myriad of symptoms such as fainting, unstable blood pressure, abnormal heart rates, severe gastrointestinal distress, cognitive impairment (“brain fog”), neuropathy (nerve damage), extreme fatigue, low blood volume, blood pooling in the extremities, and even in severe cases, death. Basically the autonomic nervous system controls all the essential automatic functions in the body that most people never have to think about or are even aware of- like heart rate, breathing, blood pressure, digestion, sleep cycles, sweating, etc. There are many different forms of Dysautonomia such as POTS, Neurocardiogenic syncope, and Multiple System Atrophy.
Symptoms and severity varies for each person, about 25% of POTS patients are so disabled that they cannot work or attend school. Some patients will get better over time, by learning to manage their symptoms, some remain sick with POTS indefinitely, and some progressively get worse.
Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure. Despite the high prevalence (it is more common than Parkinson’s or MS), most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession (the average time to diagnosis is approx. 6 years). And even with a correct diagnosis, there are still underlying diseases and causes that need to be found and addressed.
Keep in mind, it is very common to have multiple chronic illnesses, and there are many underlying conditions and causes of dysautonomia. It is just an umbrella term for many, many sub-types and even within each type, everyone has varying symptoms. You really have to be your own advocate, since many doctors haven’t even heard of it! Most people with dysautonomia become their own experts, which is unfortunate (it’s not easy to research and read medical journals, especially when you are sick!) but necessary when there are only a handful of doctors who are actually autonomic specialists…
*Most of the facts above are from Dysautonomia International, visit them for more information or find more useful links here.
10 Facts About POTS: http://www.dysautonomiainternational.org/pdf/10FactsAboutPOTS.pdf
10 Facts Doctors Should Know About POTS: http://www.dysautonomiainternational.org/page.php?ID=180
Summary of POTS (very informative four page summary with detailed information, including citations to peer-reviewed literature): http://www.dysautonomiainternational.org/pdf/SummaryOfPosturalOrthostaticTachycardiaSyndrome.pdf
October is Dysautonomia Awareness Month!
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