DYSAUTONOMIA / POTS
Finding a doctor who understands dysautonomia 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.
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Learn more about DYSAUTONOMIA. COULD YOU HAVE POTS? explains what POTS is and its connection to Sjogren's. See this page for information about the standing test.
Dysautonomia Explained. Dr. Kara Wada interviews Lauren Stiles, JD, about the challenges of diagnosis and treatment on her Becoming Immune Confident podcast. Listen to a clear explanation of what dysautonomia is, why you need to learn about it as a person with Sjogren's, and what you can do to support yourself. New!
See AUTONOMIC DISORDERS / POTS for articles that walk clinicians through evaluation and treatment of POTS and related conditions.
Cardiovascular dysautonomias impact heart rate, blood pressure, and many other systems in the body.
They are sometimes debilitating but proper management can significantly improve quality of life. There are several types; postural orthostatic tachycardia syndrome (POTS) is probably the most common.
Even though more than 1% of the general population is impacted by cardiovascular dysautonomias, few clinicians are trained to recognize, evaluate and manage these conditions.
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Patient Resources
Dysautonomia support
Dysautonomia International - List of Doctors
Quick links to Dysautonomia International Resources
Articles, brochures, & other written materials
Easy-to-read POTS article for clinicians, families, and patients
Johns Hopkins Medicine webpage about POTS
Dysautonomia describes dysautonomia and its impact on Sjogren's patients.
Orthostatic Intolerance handout - intro, one page explanation with graphic New!
Orthostatic Intolerance handout- management tips New!
Managing POTS symptoms, see lifestyle measures at the end of the article. A good start, not comprehensive.
How to exercise safely with POTS and/or severe Sjogren's fatigue
Managing fatigue in POTS, many of the tips are helpful for Sjogren's fatigue
Pacing for Orthostatic Intolerance Handout Practical tips for lightheadedness.
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Videos
Sjogren's - The second most common cause of dysautonomia, a presentation by Lauren Stiles, CEO of Dysautonomia International with Q and A by Dr. Sarah Schafer and Jennifer Samghabadi, NP
Dysautonomia and Sjogren's Disease, presentation by Dr. Brent Goodman at Sjogren's Europe 2024.
Recommend for both clinicians and patients. Review, including management, treatments, and challenges such as the lack of clinician training and a need for more research. New! Highly recommend
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10 minute intro to POTS, Dr Brent Goodman
Sjogren's and the autonomic nervous system, a presentation by Dr. Brent Goodman
Dysautonomia and gastrointestinal dysfunction, a presentation by Dr. Jay Pasricha
https://vimeo.com/dysautonomia, dysautonomia video library, free monthly lectures
YouTube Dysautonomia International video library
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Orthostatic Intolerance short video made for ME/CFS patients. Simple explanation.
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Podcasts​​
Interview of Dr. Satish Raj. Overview of POTS, including practical management. ​New! Highly recommend
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POTS Standing Test Instructions (For Patients And Clinicians)
Click on the PDF icon to download the test.
​For Clinicians / To Share With Your Clinician
Dysautonomia and Sjogren's blog post by the Sjogren's Foundation, 10-26-2023. Also a good overview for patients.
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Autonomic Disorders/POTS page has many handouts and self-advocacy tools.
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Easy-to-read POTS article for clinicians, families, and patients
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Handout for PCPs / GPs from POTS UK. I would add that Sjogren's is by far the most common autoimmune causes of POTS. Scroll to the bottom for the downloadable version.
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Good introductory article: Postural Tachycardia Syndrome (190).
The Patient Perspective: What Postural Orthostatic Tachycardia Syndrome Patients Want You To Know
01-23-2025