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DYSAUTONOMIA / POTS  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 dysautonomia

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. 

Patient resources

  • 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.
     

  • POTS vs. OH- see this blog post.  Orthostatic hypotension article. 
     

  • 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.)
     

  • 2020 Dysautonomia conference links and reviews of video presentations
     

  • Videos 

    • https://www.youtube.com/watch?v=isOb4SuwtlI   Patient-freindly explanation of the autonomic nervous system and what goes wrong. Presented at a conference for Ehlers-Danlos Syndrome but all of the content is pertinent to Sjogren's disease patients. 
       

    • 4 minute animated video explaining POTS
       

    • 10 minute intro. to POTS, Dr Brent Goodman   
       

    • Learn the physiology of POTS. Watch the first 15 minutes of this POTS video by Dr. Blair Grubb to learn how changes in the blood vessels and heart that lead to many POTS symptoms.
       

    • 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.
       

    • 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)

 

 

For clinicians / sharing with your clinician

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).
Excellent description of POTS and POTS diagnosis.  Open Access.

 

Medications used for POTS: A review of treatments, including doses and strategies. This article is not  Open Access. If you don’t wish to purchase it, you may try a medical library. Or you may copy the abstract and encourage clinicians who care for POTS to order it (191).

Dysautonomia International  Patient and Clinician education materials

The Dysautonomia project- Website and book (Freeman, Goldstein, Thompson, et al) 

Updated 12-14-2022

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