Is your Dysautonomia totally autoimmune? I’m not sure of any of the causes of my Dysautonomia. What tests are available to determine the primary cause? My GP is very open and willing to help me. He gave me an RX for Diamox and that really changed my life. Thank you for that suggestion Dr. Diana! The odd thing is, I never had a migraine before the Dysautonomia struck in June 2011. Prior to that I was mostly healthy. ( I just turned 53) I have had the coat hanger pain for years! I’m wondering if the underlying cause of my Dysautonomia might be caused by Streptococcus (ASO over 400) or Cytomegalovirus.
I’ve never been tested for EDS, There is a geneticist a couple hundred miles away who is very familiar with EDS. I haven’t decided if that should be my next step. I was doing pretty well until I caught the flu and had a set-back! Any advice would be much appreciated. I’d love to learn more about your consulting program! Very exciting!
Hi McKenzie! I’m so glad you are improved! I’m eager to hear what others have to say about this, too! I hear of all kinds of triggers – viral (CMV is something most of us have, along with EBV), bacterial, Lyme and trauma. The flu is a killer for most of us! Are our immune systems weak? In some of us, yes. In others, no… An evaluation for autonomic dysfunction (including QSART, thermoregulatory testing, etc) and blood tests for antibodies (Mayo offers a good panel) are good places to start. If your dysautonomia is neuropathic, there may be a window of opportunity for treatment with IgIV, etc. Let us know?