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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!
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?
Hmmm, Mayo refused to take me. I don’t really have a Doctor other than my GP who has been wonderful. However, everything he knows about Dysautonomia, he learned from me. And I’ve learned from your site and dinet.org. I’ll see what I can do to get get more testing done.
Hmmm, Mayo refused to take me. I don’t really have a Doctor other than my GP who has been wonderful. However, everything he knows about Dysautonomia, he learned from me. And I’ve learned from your site and dinet.org. I’ll see what I can do to get get more testing done.
OMG. How is it even possible for Mayo to NOT see you? I am stumped. Do you have autonomic dysfunction? Trouble breathing? Difficulty breathing got me in the door. I *think* you can just show up without an appointment, if you’d like. One thing Mayo does well for us, is autonomic testing (I haven’t heard many good things about their care for EDS/POTS patients, though… (PLEASE let us know if your experience is different everyone!) Oh, can you add your doctor to our “good doctors” list? Thanks!
Yes, I have autonomic dysfunction. Had a positive tilt table test. Passed out at 31 minutes, but my HR immediately went from 80 to 120 and stayed there . My elecrtophysiocardiologist diagnosed NCS, my own diagnosis is POTS. I can’t say whether I have EDS. One of my doctors diagnosed hyper mobility, but it isn’t severe. I can’t seem to take Z/Z and stay awake, any antihistamines knock me out for the next 3 days. I had all the typical symptoms including shortness of breath. Mayo simply said I was receiving good care and there was nothing more they could do for me that I wasn’t already doing. No skin issues either.
Yes, I have autonomic dysfunction. Had a positive tilt table test. Passed out at 31 minutes, but my HR immediately went from 80 to 120 and stayed there . My elecrtophysiocardiologist diagnosed NCS, my own diagnosis is POTS. I can’t say whether I have EDS. One of my doctors diagnosed hyper mobility, but it isn’t severe. I can’t seem to take Z/Z and stay awake, any antihistamines knock me out for the next 3 days.
Hi M,
What is NCS and what are the differences between that and POTS that make you lean more towards POTS ?I have been told I have EDS but don’t have the overt hypermobility either, nor the stretchy skin issues but I believe it can come in subtle ‘flavours’. I was grateful for the fact that Cetirizine (Zyrtec) helped me sleep but my reaction was certainly not as profound as yours.
Barbara
(UK)
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