• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. E

    How can one find a good Doctor for Dysautonomia?

    Is this why anymore form of stress brings on symptoms or makes me feel unwell? I wonder if adrenals are not functioning right as well.
  2. E

    How can one find a good Doctor for Dysautonomia?

    I notice stress encites symptoms in me. Any form of a lot of stress really whether physical or mental or psychological. Echobrave, some of what you said, sounds like what DNRS trains people to do. To calm down the limbic system or stressors that cause heightned arousal because the body...
  3. E

    How can one find a good Doctor for Dysautonomia?

    I live in Hampton Roads, VA and wondering how can I find a dysautonomia specialist. I did a google search and it came up with these doctors, although one is much further away. http://dysautonomiainternational.org/mapdetail.php?MapID=15&S=3 This is Dr. Kamal Chemali...
  4. E

    Still Feel sick after having tilt table test on 11/29.

    The doctor who ordered it is a Cardiologist. As far as any knowledge of CFS/ME, they have none. When I tell doctors in my area that an ID doctor diagnosed me with CFS, they just say "So your tired a lot?" I freaking wish that was all it was. They have no clue. A lot of doctors in my area of...
  5. E

    Still Feel sick after having tilt table test on 11/29.

    Yeah, I called again and spoke to a nurse. They seem annoyed I keep calling more than anything. They want me to increase salt and water intake and take the mididrone. I tell them my BP is higher and I been drinking lots of water but they want me to increase sodium intake too 13 grams. They think...
  6. E

    Still Feel sick after having tilt table test on 11/29.

    Rooney, I thought you said to take it easy and may take a week or two to recover, but I will. Im confused. You think I need to see my PCP or go to the ER ASAP? What kind of eval, just a general one?
  7. E

    Still Feel sick after having tilt table test on 11/29.

    The cardiologist place called me back. They said they have never heard of this type of reaction too a TTT before. He said call back Friday and he will have talked to the doctor by then, ugh. He said to increase my salt and water. He asked me if I am consuming 3 liters of water a day (which I am)...
  8. E

    Still Feel sick after having tilt table test on 11/29.

    Thank you, Joh Yeah, I was diagnosed with vasovagal dysautonomia after the TTT. Everything on the test wasnt too bad, until they used the sublingual nitroglycerin. Then I got really hot and SOB and around the 17 minute mark BP and heart rate plummeted. They put the table back down and gave me...
  9. E

    ME is not mould intolerance; mould intolerance is not ME

    I got sick after living in highly contaminated toxic mold apartment that had sigificant water damage. Testing revealed extremely high counts of Stachy, Chaetomium, and various species of toxic Aspergellious such as Niger and Versicolor. I know this exposure was the catalyst to my illness. But...
  10. E

    Still Feel sick after having tilt table test on 11/29.

    What is PEM? Not sure how a tilt test can cause that. Any idea how long the PEM lasts after the TTT?
  11. E

    Still Feel sick after having tilt table test on 11/29.

    I had a tilt table test on 11/29. Was going well during the first part, but after they gave me the sublingual nitroglycerin, my heart rate dropped into the 50's and systolic BP into the 50's at the 17 minute mark. So was positive for dysautonomia. Didn't feel well after the test, but about 2...