Hi! I was diagnosed in 2014 with hEDS and POTS. I understand that you're struggling. I would look into gastroparesis and mast cell activation syndrome. These are common morbidities with EDS and cause serious gastric trouble. I had the same symptoms and diagnosed with gastritis before realizing it was much more than just that. I hope you find relief soon.

Thank you, the mere fact that you commented was comforting as this has felt so isolating. I already was tested for mast cell disorder and results were negative but I still suspect I have a histamine intolerance because I the low histamine diet helps and so do antihistamines when I get anxiety and tachycardia especially after eating. I have not had testing for gastroparesis though. Did you? If so, what was the testing like for you?

Usually it’s a barium swallow first, then a radioactive tracer exam. Didn’t do me any good b/c mine is vagal-mediated and occurs in the late afternoon evening. The tests are only done in the a.m. (3-4 hours for each type). So, I was diagnosed on symptoms and lack of response to medications.

I’m in the exact same boat right now. The anxiety is so real. Trying to navigate these new health problems, on top of trying to survive physically, and deal with the fall out of becoming increasingly nonfunctioning. It’s terrifying. The one thing that’s helped me emotionally is Kate Bowler’s podcast. Lots of great interviews with people navigating health problems and crises

My EDS doctor said mast cell tests come back mostly negative. So, even though it came out normal if you have symptoms of POTs and mast cell you most likely have it. He said that studies he's been working on have shown 80% of EDS patients have mast cell activation syndrome. For gastroparesis, I was diagnosed based on symptoms because all of the tests I had were done incorrectly. Also, if you're feeling isolated please feel free to message me any time.

Your story sounds very familiar to mine! Although I do not have POTS, I have Orthostatic Hypertension and Vasovagal Syncope instead. I also have hEDS and I was diagnosed with GI motility disorders via a Stomach Emptying Study. I would highly recommend that you start there… find a GI motility specialist who is familiar with EDS ( or at least willing to learn) and willing to order a Gastric Emptying Study. The way to manage, really depends on many things. You will need to know if you are dumping or GP before you can know how to best manage.

I also have POTS and EDS, along with gastrointestinal disorders. Mine are the opposite of yours though - if I don’t eat for a few hours, my stomach hurts as though I’ve been starved for a week. I suspect you and I have opposite motility orders - I likely have dumping syndrome but yours sounds like it could be SIBO or slow gastric motility. I hope you find answers soon!

I have the same issues. Have to have an endoscopy next week. I have lost to much weight. I need to gain 15 lbs but not been able to. I have regular flare ups. Praying health for all.