westernmass

So why are doctors dismissing this? Why is this not considered "autoimmune pots/dysautonomia"? Does anyone know of more effective AI treatments that are helping with pots? I'm so frustrated

I believe there is an underlying autoimmune issue to POTS, as I know many of you do. I'm curious about low positive ANAs, as they seem to be common amongst us. I'd like to hear all stories, but am specifically curious about those without a dx autoimmune disorder (ie lupus sjogrens celiac etc). I first had a 1:100, then 3 months later 1:400, and a year later I am still 1:400. Speckled. My GP said if the issue was autoimmune we'd continue to see it rise. The (horrible) Rheumy said ANA means nothing, did bloodwork for lupus, sjogrens and ms, all negative, and said not autoimmune. But so much of this seems autoimmune in nature! And ANA must be relevant...

I have GI issues. Originally dx with IBS by a naturopath, but the GE says no it's "more complicated" because I'm not really constipated and don't really have diarrhea and having a BM doesn't resolve much! Lol! I was having a HORRIBLE time this fall/winter. Extreme bloating and related pain, nausea after eating anything, not complete BMs. Just had an endoscopy (showed gastritis but that's it). Negative for celiac. Had a food allergy test, was positive for a ton of things, cut them all out and didn't feel better. Did ID some triggers (alliums, dairy, refined wheats). I have eaten clean for a long time. Tried Gfree, tried vegan. Tried digestive enzymes, probiotics, dicyclomine, sucralfate. Some things maybe helped a little bit but nothing really helps. I seem to be having a slight improvement at the moment (maybe 25-30%) but not sure if these symptoms will just wax and wane. All started about 6months into POTS. ANS does control digestive system. Who knows am curious to read others' experiences. Curiously I haven't really lost much weight, which is something I'm trying todo since I gained 15 lbs since POTS. You'd think working out + less food = weight loss but GE said its common because body slows metabolism when it's not all working right.

I used to take it for hair growth (definitely works) but seems to make me break out so it's always a catch 22 for me... No idea about your actual question but just wanted to chime in about hair/nails

I feel the same way as you! I've had a lot of tests (and sort of suspect something lupus-like) but not much has come of it. Food intolerances (though some docs say that test is worthless), and elevated ANA (though Rheumy said that didn't matter, lol), gastritis ("but that could be from lots of things") and so on. Everything "normal" except I have POTS and "delayed OH". I am lucky to have a wonderful GP, who will pretty much test for whatever I come up with... But is pretty much out of ideas himself, as am I. I started brining a long list of symptoms and ideas to my appts, which I was embarrassed about at first but is great! If we run out of time or it's a lot to cover, I leave him the notes and he'll get back to me. Don't be shy with your doctor! If he/she doesn't seem to care find someone else. I feel you on "not wanting to start all over" though. It's never ending it seems! I also get you on not knowing if you are getting better, or just "dealing" better and making the best of it. Anyway, be well, and good luck!

My hands and feet are usually/often ice cold. Painful at times. Every now and then I realize (with shock!) that they are normal/warm which is such a nice surprise. I chose "other" because I don't know what type of pots I have and don't seem to fit into any of the categories neatly.

I don't have lupus, but have always personally suspected it. Do you have a positive ANA? What was it? What other tests have you had to determine lupus? The Rheumy I saw a year ago didn't take me seriously so I've wondered for awhile if I should see another. I haven't dealt with weightloss, but have dealt with lots of GI issues.

I just had this done! I was totally freaking out but it was fine. I fainted getting the IV (lol) and I told the anesthesiologist I have POTS so he gave me extra fluids. My stomach and throat were sore for several days after, but just uncomfortable not painful. Good luck! Ps I showed gastritis too... My follow up is on Monday.

No, I stopped taking them after a month. I maybe possibly felt a teeny more awake during the day and maybe possibly felt a teeny bit better sleep, but totally not worth it personally to be taking all those pills and not feeling any different. I think I wanted them to help more than anything. Still not sure what the test results indicate, if anything. Having pots is so frustrating.

Not sure what you consider young- I'm 26 (but feel 86 thanks to pots lol). I did not have the vaccine. I had chicken pox as a child and a mild bout of shingles approx. 6 months after the pots dx. Any link here to any of the herpes viruses? And/or the arginine/lysine balance?

I was vegan (eating a healthy, organic and clean balanced diet) and in the best shape of my life when I first got POTS. Over the past year I've added meat and limited dairy back to my diet, but still eat very clean, organic, whole food based. I enjoyed being vegan. I've tried a handful of diets (due to GI issues) since POTS and nothing seems to help, so I just stick to what I know is healthy. China Study definitely worth reading, forks over knives and also food matters are worth watching. Too many people have no idea what they are truly eating!

I saw my dr and am being referred to a GE. Issie, I do take digestive enzymes with meals, they do help somewhat. And a daily probiotic. I just started dicyclomine 20mg 4x/day, and simethicone (OTC) after every meal. Simethicone helps somewhat, and possibly the dicyclomine as well but also makes me dizzy and blurry eyed and possibly bradycardia?

Ugh, ^^ that's the kind of story that makes me NOT want to go back on the pill! I'm glad you posted it though. I will definitely pay close attention to see if the pill makes me feel better or worse. I wish there was a pill for men...

Love this!

Thank you Leslie. I have seen that link and just re-read it. But with some of the things I've had (even Shingles!) the way I got it was much different from pictures and may/may not match up with symptoms list. Even with POTS--we all have so many different presentations. I guess I'm looking for personal stories like yours that can point me in any direction Was sort of wondering if any one with GP presented with similar symptoms to me. I am off to google gastritits and lymphocyctic colitis now... It seems like this IS something I need to pursue with the Dr though, correct?

I'm not asking anybody to attempt to diagnose me! I finally have an appt with my PCP on Friday and an trying to figure out which of the many many things are priorities to talk about. For those with GP experience, does this sound like it is a possibility? -nausea, especially after eating -bloating, to the point of looking pregnant -abdominal pain, cramping & discomfort -not constipated, but "incomplete BMs"...what's going in isn't coming out... LOL sorry -sometimes diarrhea (seems to be connected to what I eat... Refined/processed foods) -feel full easily, eat small (!) meals but haven't lost weight since I initially gained it- about 6 months after POTS dx, my thought was due to inactivity, but have been seriously working out and eating small, healthy meals and not really losing weight... If not gastroparesis, does that list of symptoms ring a bell with anyone?

^^but this has started since developing POTS. Just wanted to add that.

My head itches like crazy too! And I can never find the "spot" causing the itching. An area on my stomach gets episodes of extreme itchiness, sometimes my legs... Never correlated it with POTS so this is very interesting...

I did feel needles when stuck in my feet, but in my notes from the autonomic testing center it says: "sudomotor reflex absent in lower extremities"- what does that mean? Does that indicate neuropathy? I have pain/tingling in my fingers- boyfriend says its from being on phone so much (true...) but is that common?

I have had periods of both. Generally during exercise feel great and then later just beat. Recently have been talking exercise program more seriously, was feeling great and having more energy and less crashes. But two workouts ago I bumped up to 40 min cardio sessions, and have been experiencing some dizziness and chest pain toward the end of my work out. Not sure what this means? Definitely new. Hopefully my cause for concern. I feel like I've gotten so good at ignoring pain, for better or worse...

I was on the mirena iud (stopped my period for 2+ years) went off in October/November and have returned to normal cycle. Honestly don't notice much of a difference. On BC I felt crappy all the time, off of it I feel better sometimes and much worse other times of cycle, so kind of both bad options LOL! Waiting for next period then trying bc pill...but planning to have a monthly period as it feels more natural to me. Sorry can't be more helpful

Did you look into Anna hohler?

It indicates a possible autoimmune issue. Definitely not necessarily lupus! The rheumy i saw said the ana is usually much higher in autoimmune diseases... like 1:1000...Mine came back 1:100 and 1:400 and I've tested negative for lupus, sjogrens, ra... Seeing a Rheumy definitely is worth it so you can cross those things off. I've always secretly suspected lupus or an autoimmune disease but doctors don't seem to agree. Good luck.

I have similar resting HR ^^ My doctor didn't seem hugely concerned, but it was one of several unpleasant side effects that made me ditch midodrine. Good luck!

Hmm... I've had a twitch under my right eye (off and on) for about a month now. So annoying! Interesting about magnesium. I take magnesium supplement several times a week. So sick of all these symptoms. It's so hard to know what is pots and what is just life/normal.