Can folks do me a favor and circulate this post widely to people with POTS (Postural Orthostatic Tachycardia Syndrome)? I've got a question.
Do you experience chronic nausea?
all the fucking time, I want to vomit constantly
only ever after eating
I have other specific triggers (tell me in the tags)
I have POTS but no nausea outside of my fainting episodes
I have POTS and never any nausea
Bonus info: About a year ago, I lost my appetite completely and have been dealing with chronic, debilitating nausea (but rarely ever puking) for about a year and a half. I got diagnosed with POTS 3 years ago and take ivabradine daily for my tachycardia. All standard GI exams (colonscopy, endoscopy, gastric emptying study, full body CT with contrast) have come up perfectly normal and my IBS-C medication does not impact my nausea at all; it's equally bad when I take those meds as when I do not take those meds (constipation does not seem to be the cause of the nausea).
At my last electrocardio appointment, my doc said that colloquially this is a problem for POTS people. He said we don't know anything else. He said "sorry. Hang in there." This is ruining my life, so please throw some data at me. I want to have NUMBERS for my GI doctor at my next visit.
@alanaisalive @thebibliosphere
maybe you have input for this`?
MCAS is comorbid with POTS (and some forms of EDS) to the point that some doctors think it's the same thing with different clinical presentation. Mast cell activation syndrome 101 is a primer a friend of mine put together because education around this issue is shit. To pull out the most immediately relevant bit, gastro symptoms of MCAS flares include: "diarrhea, constipation, cramping, acid reflux, nausea, vomiting, difficulty swallowing, throat tightness/swelling but not to the point of anaphylaxis".
POTS also means you tend to dehydrate like a motherfucker, hydrating is harder than it should be (what the FUCK is my body DOING with all this salt?? questions I ask regularly and still don't have an answer to), and, well. Dehydration often drives nausea too.
I live on Skratch Labs' hydration salts. (Yes, that's a referral link. I get points if you use it, but more to the point *you* get $10 off your first order $30+. fwiw, I mostly throw my points to charity, and towards buying other people samples to see what they like or don't.) They use real fruit to flavour everything, they don't use artificial sweeteners (which some people are sensitive to) because there are actual scientific reasons for including sugar in hydration salts--active transport drives a lot of Na+ transfer in the cells--and their wellness (which is WHO formula hydration salts, with sodium citrate and potassium citrate instead of the chloride salts because citrate is easier on the stomach) and high sodium formulas do not taste like chalky death. (Also their rice cakes and energy bars taste like food and not the tears of children promised chocolate and given carob, which is frankly impressive but also kind of tangential to the hydration.)
Skratch Labs started off as a sports nutrition company marketing to batshit high performance athletes but they've thoroughly accepted their adoption by a bunch of crips with grace and aplomb; they won't make specific claims about their stuff for managing POTS and such because they're regulated by the FDA and take that seriously, but they DO nerd out a lot about the nutritional science of hydration on their blog.
Anyway! I would definitely rec:
starting the basic OTC regimen for treating MCAS listed in the primer I linked to see if that helps at all with the nausea (and it it helps but doesn't solve it, progress down the flowchart)
whether or not it's Skratch, finding a hydration solution that you can stand drinking a shitton of and drinking enough you need to pee at least once an hour; it'll help with the other POTS symptoms either way and it *might* help with the nausea.
nb, if you have high blood pressure concerns, balancing managing POTS against that is fun and exciting because most high blood pressure meds are diuretics (and many of the ones that aren't are MCAS triggers! because MCAS is just the most fun). if that's you, HMU via email (niqaeli @ gmail) as I'm not on Tumblr much and probably won't see your reblog or message in a timely fashion, because I've got a friend who's had to do the relevant research for herself and I can get you in touch.
