somewhere over the rainbow

Hi, POTS IS a form of Dysautonomia. Dysautonomia is an umbrella term that describes a bunch symptoms and literally means dysfunction of the autonomic system. It includes a group of conditions, POTS being one. I, myself have POTS, and I'm not a Dr, but what you're describing sounds just like POTS. The test you had done is called the poor man's tilt table test, and that is actually how I was diagnosed. You should have been sitting with your feet on the ground, though. The important part is that they waited the appropriate amount of time in between blood pressures, (preferably it's best to take them manually, bc the automatic machines aren't always reliable, but that's not mandatory). I can attest to that from my own personal experience. Either way, the biggest factor is waiting the appropriate amount of time in between blood pressures. They didn't perform the test right thiuy bc your feet should have been on the ground, sitting in an upright position, not with your feet out in front of you. Some ppl will say the only day to diagnose is by a tilt table test. That is the golden standard. But the "poor man's tilt table" test is just as reliable and accepted if it's done properly. You are being treated and managed as if you have POTS, the first things they start with usually are increasing fluids and salt intake, which usually is just salting everything you eat, I was never given an amount of salt. I was told to not worry about how much salt I had, which is usually the concern. Wearing compression garments helps with blood circulation, to minimize the pooling in legs and feet. The other thing that is usually added in from my experience, and talking with many others is a beta blocker. With that being said, I ALWAYS tell ppl to follow your gut instinct. You have to be your own advocate, and of there's anything I've learned over the many years of my journey, it's that. If it were me in your shoes, I would get a second opinion. That's just my two cents, fwiw. Hope that helps.

So I find this extremely interesting. My 7 yo and I both have hEDS, and I have POTS & MCAS. I'm told she's too young to be dx with POTS, and she's suspected to have MCAS. She is showing all the early signs of Dysautonomia/POTS, though, & that's why I find this soooo interesting. She's the one who is suddenly complaining of what feels like a rope around her neck. At first it was only when she would swallow. She's had issues with swallowing and choking/food getting stuck, and is currently being tested for things. I have been dx with idiopathic esophageal spasm myself bc I get bad spasms with swallowing, no rhyme or reason to it. As of tonight she said the rope feeling was not just triggered by swallowing. But by breathing, as well (non emergent, obviously, but concerning nonetheless). Which is what led me here... I must say I agree that when my POTS is triggered and flared up, it's a domino effect and it triggers the MCAS symptoms to flare up full force. I'm currently in that situation. I also have the "fullness" feeling in my throat quite often, even if I clear it out, and will have clear mucous built up constantly. And for me, swallowing saliva or even any liquid can make it worse, too. I've been on a PPI 2x a day for decades and I'm also on H1 H2 BLOCKERS for the MCAS (high dose of xyzal [stronger formulation similar to Zyrtec] & pepcid). So it's not allergy or GERD related for my case, but I wish that helped... There is something called EOE, that is allergy related and relieved by allergy meds and PPI, but you have to have biopsies done to get diagnosed and not be on those meds. Difficulty swallowing is one of main symptoms, and might explain some of the other weird sensations. Something else to look into. 🤷🏻‍♀️ I don't always necessarily get the tight feeling or constricted throat, but I cannot wear anything tight around my neck, bc it feels like I'm being suffocated or choked and then I do get the sensation. Maybe this is related to it... It triggers that. Idk. I can relate to alot of things in this thread, and maybe it's a sign I stumbled upon it for my daughter.... Idk. Thanks for the info fellow Zebras & POTSIES.