Hi Barbara
By the way did you always get high diastolic readings and narrower pulse pressures when you had chest pain?
Thank you
Richard
Hi Richard, and welcome to the forum! Barbara has given you some great answers, I see. I’m not sure I can add much to her excellent advice, but I’ll throw in a couple of thoughts. First, I know plenty of males who have dysautonomia/POTS! Guys are sometimes less likely to use social media for health issues, I think, or we’d hear from more of them. I know a few whom I correspond with outside of the forum for that reason. For me, I was ready to post my symptoms on the internet if I had to! I just needed answers! Next: diet. For a while, if you can avoid gluten, lactose, and some of us are fructose sensitive (just watch how you feel after eating fruit), and histamine foods (cheese, fish, left-overs…) that’s a great start. Did ZZ meds help with the diarrhea? After 8 WEEKS of incapacitating diarrhea, ZZ drugs stopped mine in 36 hours! Fingers crossed. Diamox and hydrocephalus: You likely know you need to get your images yourself, right? External communicating hydrocephalus is missed, more than caught, I’m afraid. But with symptoms and signs of hydrocephalus, Diamox is a God-send. You may have seen my video about my friend who vomited every time the cabin pressure changed in an airplane… Yikes. Her MRI showed hydrocephalus (rather severe), but was STILL missed by the radiologist. Diamox allowed her to fly with no problems. You likely won’t need it forever, which was a surprise to me. Let us know? Pituitary: My research indicates that we may actually have (additional) damage to our hypothalamus (which of course controls the pituitary). I don’t know if it is from pressure (which varies — we can’t have it under control every minute with a “static” medication), or from poor blood supply to the hypothalamus, but keeping an eye on everything from free testosterone, ACTH, DHEA, cortisol, thyroid levels, etc. is a good idea. Cool? Posture: I truly believe that most of us develop some laxity (EDS patients have a double whammy) of many ligaments which makes a soft cervical collar one of our best friends at night time! I have an adjustable bed so that I can raise and lower the head of my bed as needed. What a God-send. If CSF/venous blood is not exiting, I know it, and elevate my head to almost a vertical position to drain, then I can go back down again. I had a bad valve at the base of my internal jugular vein. When we lie flat, venous blood drains through this vein. When we’re vertical, venous blood drains through the vertebral veins (thank Heavens). So, remember, you may need to change position in order to “drain”. Finally (I’ll stop here!), PLEASE keep an eye on your “blood thickness”. Many of us have genetic causes for blood thickening, but most of us who have been sick for a while develop it anyway. (Research as to the cause — and treatment, coming soon!). My family history was horrible, not unlike yours — MI’s, phlebitis, strokes, etc everywhere. Yikes. Blood thinners allowed me to exercise again, and BOY, do they help with cognition! Hang in, my friend, 😉