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DYSAUTONOMIA / POTS

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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. 

Learn more about DYSAUTONOMIA

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.

See AUTONOMIC DISORDERS page for self-advocacy tools.

Patient Resources

Articles, brochures, and 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.
 

Could you have POTS? - Explains POTS and its connection to Sjogren's. See this page for information about the standing test.
 

Orthostatic Hypotension (OH)

 

POTS vs. OH 
 

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

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 

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

 

POTS Standing Test Instructions (For Patients And Clinicians)

Click on the PDF icon to download the test.

For Clinicians / To share With Your Clinician

See the Autonomic Disorders page for articles that walk clinicians through evaluation and treatment of POTS and related conditions.

Easy-to-read POTS article for clinicians, families, and patients

POTS On A Page - GP Guide

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. 

Good introductory article: Postural Tachycardia Syndrome (190).

Dysautonomia / POTS Videos

Updated 05-25-2023

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