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This interview is also available as a video on YouTube: https://youtu.be/vRsC493mlkg
Positional Orthostatic Tachycardia Syndrome (POTS) is one of the many multi-system conditions that are very tricky to diagnose. It is estimated that some 3 million people are affected, but there is no simple test to make a diagnosis. The average time to diagnosis is about four years, and about half of all diagnoses are ultimately made by a cardiologist.
The symptoms of postural orthostatic tachycardia syndrome, or POTS, can be as varied as they are confounding.
There can be fatigue, pain, bleeding disorders and anxiety. Heart palpitations and lightheadedness are common. Some patients experience gastrointestinal issues or brain fog. For the most severely affected, the simple act of standing up can send them crumpling into unconsciousness. Basically it is a disorder of the autonomic nervous system — the system that regulates all those functions we take for granted and over which we do not have conscious control. A survey of patients worldwide by the Dysautonomia Foundation (DysautonomiaInternational.org) has found that a high percentage of POTS patients have at least one and often more than one autoimmune condition as well.
Dr. Blair Grubb (a cardiologist) and his co-investigator Dr. William Gunning (a pathologist) at the University of Toledo (Ohio) have been studying POTS for more than three decades. Their research has led them to the belief that POTS is an auto-immune disorder. They are collaborating on innovative research examining patients’ plasma for autoantibodies and inflammatory markers.
Joyce and Robin speak with Dr. Grubb about POTS, how to get help if you are experiencing these symptoms. Interestingly, one of the possible triggers for development of symptoms is having a serious viral infection. A number of post-COVID patients with what has become known as “long-haul COVID” are experiencing POTS symptoms or other autoimmune issues.
As Dr. Gunning says, “The development of POTS post-COVID is an additional piece of evidence that a viral infection might start a cascade of chemicals produced by the innate immune system in the development of autoantibodies.” There is a great deal more to learn.
References:
- New Research adds evidence that POTS may be an autoimmune disorder, https://www.eurekalert.org/news-releases/721447
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The Patient Perspective: What postural orthostatic tachycardia syndrome patients want physicians to know, http://pubmed.ncbi.nlm.nih.gov/2903594
- Grubb and Gunning, new article expected soon (we will update this page when it is available)
- SmartPatient.com has a number of support groups for people with autoimmune conditions, including POTS