More to follow!
More to follow!
Exploring Sjogren's Videos, Sjogren's Foundation
Highly recommended. Videos one and two of the Season One series are a must see for newly diagnosed patients and their friends and family.
DYSAUTONOMIA INFORMATION
What is dysautonomia?
Briefly, dysautonomia is the medical term used to describe a malfunctioning autonomic nervous system (ANS). The autonomic nervous system controls "automatic" functions such as heart rate, blood pressure, digestion, sweating and others. For an introduction to the ANS, see this page on the Dysautonomia International website. Dysautonomias have many causes, including autoimmune. They are not fully understood. Sjogren’s patients are especially prone to dysautonomia, with symptoms ranging from mild to severe.
Cardiovascular dysautonomias
These impact heart rate and blood pressure. They often cause fatigue, along with many other symptoms. They are sometimes debilitating. There are many types; postural orthostatic tachycardia syndrome (POTS) is probably the most common.
Finding a doctor who understands dysautonomia
This can be difficult. If you are seeking care from a neurologist, cardiologist, or other doctor about possible or known dysautonomia, ask if they treat dysautonomia patients. If they don't, keep looking! It can be helpful to ask for referrals from your local patient support group, or check out the list of doctors from Dysautonomia International.
LINKS
Patient Resources
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POTS Overview Article: Postural Orthostatic Tachycardia Syndrome Dyautonomia International
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2020 Dysautonomia conference links and reviews of video presentations
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Videos
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Managing life with Autonomic symptoms: Dr Peter Rowe lecture. Clear explanations of POTS and neurally mediated hypotension (NMH). Great practical tips. Not Sjogren’s-specific, but good general info.
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https://vimeo.com/dysautonomia. Many videos, but check out the 4 minute POTS video for a brief introduction to POTS.
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Learn the physiology of POTS. Watch the first 15 minutes of this POTS video by Dr. Blair Grubb for a clear illustration of the of the changes in the blood vessels and heart that lead to many POTS symptoms.
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Clinicians / Sharing with your Clinician
Journal article: concise intro to POTS You can print it out and share with your clinician.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361090/pdf/bjgp62-286.pdf
Dysautonomia International Patient and Clinician education materials
Updated 2-14-21