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Medical Q & A: Dysautonomia News Q2 2018



551585336_MedicalQA.jpg.c453716557accd5caba2d042e4895320.jpgWe welcome your letters to DINET's Medical Advisors.  Please be aware that the information provided is not meant to be a diagnosis or medical advice.  It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org 

Q:   Is there any connection between autonomic dysfunction occurring after the gallbladder is removed.  I’ve noticed at several of my support groups that there are a number of young people who have had this procedure performed and then developed dysautonomia following it.   

Submitted by Michael W, Facebook Follower

Dr.Suleman.jpg.c9d827996251dbc130df7c8a03a442bc.jpgA:   I agree! that is a very astute observation!
I have also seen it.  I don’t have a good explanation but I think the delayed gallbladder emptying on Hida scan is probably related with joint hypermobility spectrum (similar to delayed gastric emptying) I am not convinced that biliary dyskinesia commonly reported essentially means a pathology.  These are my personal observations for the last several years. Only 3 days ago I asked my students to take it up as a research project. Hope to get it published eventually. My answer may not be supported by peer-reviewed research.

Amer Suleman, MD, FSCAI, FHRS
The Heartbeat Clinic
Adjunct Professor, UT Dallas

Q:  I have been diagnosed with POTS and autonomic dysfunction and recently IBS.  My question is since gastric issues are common for people with dysautonomia, are disorders like IBS, colitis, etc just symptoms of dysautonomia or are they separate illnesses that develop because of dysautonomia?  Thank you for your concern. 

Submitted by Cathy, DINET member

Dr_Raj.jpg.c2a09f8e0c318aa8b5e0f85e962d75cb.jpgA:   The short answer is that it is not known and likely variable in different patients. Patients can absolutely have colitis of various causes that have nothing to do with autonomic dysfunction. For example, there is no reason why someone with POTS cannot also be unlucky enough to have ulcerative colitis. I do suspect, however, that in some patients that have gastric emptying problems, that there may be a link. At this point in time, the treatments are largely symptomatic. Hopefully, that will change over time as our understanding of the mechanisms of illness improves.

Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University

Q:    When I was first diagnosed with POTS, I had syncope or presyncope episodes 5 or more times per day.  After working with a cardiac rehab program prescribed by my doctor, I have been able to reduce my episodes to 2 - 3 per week. They taught me all about hydration, breathing from the diaphragm and learning the warning signs and not to panic when I feel an episode coming on.  All of it helped me greatly. I’m wondering if there are any rehab programs, similar to pulmonary or cardiac rehab, for dysautonomia patients to learn how to manage and live better with this illness?

Submitted by Joann, Facebook Follower

A: There are some rehabilitation programs that have adopted a version of the Levine exercise protocol. Locally, the cardiac rehabilitation program has created a "POTS program", and I think that other places do have something similar. However, I do not know of a comprehensive program. The Mayo Clinic does have a Pediatric program that is a multi-disciplinary, intensive 3-week outpatient program that is focussed on improving the functioning of these children (and getting them back into school). Often patients learn how to manage and live better with their illness from other patients, through patient advocacy groups, online groups and sometimes local support groups.  

Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University

Q:   Can autonomic dysfunction cause skin issues like eczema, heat rashes, psoriasis, etc.?  Thank you,

Submitted by Evelyn, DINET Member

Dr.Blitshteyn.jpg.57ec51cd0439de33621f893aa4036c28.jpgA:   No, autonomic disorders typically do not cause eczema, heat rashes or psoriasis. However, psoriasis and some other skin conditions are autoimmune disorders, and autonomic dysfunction can occur secondary to autoimmune disorders.  Therefore, individuals with autoimmune disorders, which may include skin manifestations, can have co-morbid autonomic disorders due to a shared pathophysiology rooted in autoimmunity.

Svetlana Blitshteyn, MD
Director and Founder of Dysautonomia Clinic
ical Assistant Professor of Neurology
University at Buffalo School of Medicine and Biomedical Science

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