Dysautonomia, or dysfunction of the Autonomic Nervous System (ANS) is frequently seen in people with Ehlers-Danlos Syndrome (EDS), although not everyone with EDS develops autonomic dysfunction. The ANS regulates things your body does automatically, such as maintaining blood pressure, heart rate, digestion, and temperature control.
Dysautonomia is not rare, but it is under-diagnosed. This is largely because despite it’s prevalence it is isn’t recognized by many doctors. Dysautonomia International is working to correct this. Still, it’s not a surprise that even after having a positive Tilt Table Test (you can learn more about the test and my experience with it here), I had to see more than one doctor just to receive the blanket diagnosis of Autonomic Dysfunction/Dysautonomia. The first cardiologist that I saw wasn’t confident that he could make the diagnosis even after my results indicated that I met the criteria for more than one type of dysautonomia. The cardiologist that I currently see believes that I likely have multiple dysautonomias and differentiating them will be of little value for treatment. The types that it is suspected that I have include: Post Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Neurally Mediated Hypotension.
During the test, my heart rate increased dramatically (by about 80 bpm) and my blood pressure dropped with just as much gusto. I never actually lost consciousness, but was in a state called “near-syncope” which means I nearly passed out. The test was basically a way of calling forth an extreme version of my day to day symptoms. I regularly experience lightheadedness, dizziness upon standing, unstable blood pressure and heart rate, slowed digestion , excessive sweating, and heat and cold intolerance.
After the test, I was given the recommendation to increase my salt intake, along with drinking (even) more water, and wearing compression gear (starting with the athletic leggings and moving to medical grade if needed). Unfortunately, adding salt to my diet was a BAD idea where my migraines were concerned. This is just one example of how having multiple chronic illnesses increases the difficulty in managing each condition. As a result I have since given up the extra salt, and added a beta blocker to my routine. I’m happy to report that after a few weeks, the medication seems to be helping quite a bit. My balance has improved (I fall less), and my ability to stand for extended periods of time and be active has increased. I am optimistic that I can use the medication as a building block for increasing my activity level and my level of physical fitness which should in turn continue to help improve my Dysautonomia symptoms and joint stability.