Now that I was part of the EDS community, discussion of dysautonomia became common. I certainly did not want another diagnosis, but I could not ignore the symptoms I was experiencing: unstable blood pressure, abnormal heart rates, poor temperature control, lightheadedness and near passing out when standing, changes with dilation and constriction of my pupils and acrocyanosis (bluish discoloration of hands and feet when standing).

I started the quest for testing, not realizing how daunting this would become. I am blessed with good health insurance that allows me to travel out of my local area, so I traveled to Boston to Beth Israel. After filling out extensive paperwork, I had a tilt table test, done by a qualified technician, but did not see a physician. To my surprise, I passed the test. That was in 2013, shortly after my MCAS diagnosis, so I just ignored the symptoms.

By 2016, the dysautonomia symptoms were worsening and I discussed it with my immunologist. She referred me to an autonomic specialist at Brigham and Women’s. The autonomic testing there was very comprehensive. I did not have POTS (postural orthostatic tachycardia syndrome) but I did have small fiber neuropathy (SFN). I also had cerebral auto-regulatory failure associated with reduced orthostatic blood flow. That meant that when I stood for a while, the blood flow to my brain was decreased enough to cause the symptoms of lightheadedness, nausea and near passing out.

This physician wanted to trial medications that had previously caused allergic reactions, but I decided not to chance that with my MCAS. He then suggested to drink more, wear compression and there was little more to offer.

My symptoms did not resolve with increased fluid and compression. I became involved in Dysautonomia International and decided to see one of the highly recommended physicians on their website. I went to Mayo Clinic in Arizona in January 2019. I have been going there since and that physician has helped me the most. He did very extensive testing, understanding there was an underlying cause for my dysautonomia. More to come on that. Here is a link to Dysautonomia International:

• https://www.dysautonomiainternational.org/

Also from their website, this PDF was one of the most helpful documents to me in the beginning:

• http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

Never give up if the first physician tells you nothing is wrong. Monitor your own blood pressure and heart rate. If it wildly fluctuates, connect with Dysautonomia International.