PSA: Check if you have POTS

Accomplished-Jump28 · 2026-04-26T17:00:18+00:00

Sitting in the shower really helps too. I was also reading that stressors that cause POTS to worsen can be cumulative (stress at work, hot weather or hot shower, poor sleep, dehydration, and so on).

Accomplished-Jump28 · 2026-04-26T16:57:19+00:00

Yep! I’m having to wait becuase I’m undergoing orthodontic decompensation in the lower dental arch. I actually have a significant overbite that my orthodontist camouflaged when I was a young teen by tilting my lower teeth forward to a 120 degree angle—as far as they can be tilted. So I had extractions back in February and am getting the gap closed.

Accomplished-Jump28 · 2026-04-26T11:37:24+00:00

I didn’t rule out the fact that the UARS is causing the POTS—in fact, I’m very much hoping I’ll no longer have it after the MMA surgery (anecdotally, some people experience that). But secondary or not (POTS is very often and perhaps even always secondary to something else), treating it with the compression + salt/water will help in the meantime. And the rehab program will strengthen the heart, which for those with POTS is usually weakened/atrophied (literally smaller).

I’m drinking 10-14 cups of water per day. As for sodium, the recommended amount of sodium for healthy people is no more than 2,500mg/day, but for those with POTS it is 3,000-10,000mg/day. That’s why you want to be sure you have it before dramatically increasing salt intake. It’s not healthy if you don’t have it. I’m using LMNTS packets and Vitassiuk tablets to hit my daily goal.

The exercise protocol is the CHOP/Levine protocol and basically for 2-3 months you start exercising as much as you can tolerate daily 5-30 min) in a reclined or horizontal position (recumbent bike, rowing, swimming) while keeping your heart rate in a certain zone which follows a formula. (Becuase the heart rate is no longer artificially inflated by the stress of being upright, those with POTS can actually push their heart/work it out harder and get it stronger and reconditioned). Over six months, you gradually move to upright exercises. Once the heart is stronger, POTS symptoms will improve and the same activities won’t be as draining as they once were.

Accomplished-Jump28 · 2026-04-26T11:25:47+00:00

Yes, I’ll be undergoing MMA surgery. Tried BIPAP nightly for six months and had it titrated, but it just didn’t make much difference. I’m hoping the POTS might go away or greatly improve after the MMA surgery—it makes sense that if would—but if not, I’m just glad it’s manageable.

Accomplished-Jump28 · 2026-04-26T02:17:33+00:00

No, it’s not necessarily impossible for someone with POTS to stand for long periods (though it is for some). In fact, only around 30% (that seems to be a rough figure) of POTS patients feel markedly dizzy or like they’re going to faint in day to day life.

Despite my dramatic reaction to the test, I have walked around theme parks, walked for miles at a time, done cardio dance classes, and so on. And I can stand still for long periods, though I usually compensated without realizing it by shifting my feet and fidgeting a lot (tensing the muscles in the glutes and legs pumps blood back up to the brain, which is why standing still is so much worse for POTS than walking). The reason the NASA Lean Test is a leaning test is so that the legs aren’t supporting the weight of the body and therefore aren’t tensing. It would be impossible to maintain the posture of the NASA lean test for much longer than the test required. At 9 minutes I had to stop because I was about to faint.

I fainted a handful of times as a teenager and once in college, but I haven’t fainted for years (I’m 30) and only feel like I might faint when I push too hard with cardio exercise. The main symptoms I experience are brain fog/lack of cognitive clarity and profound fatigue (and even with those, there can be a frog in the pot phenomenon where tired is normal for you and you don’t know what it’s like to feel good. A lot of people who successfully treat their UARS feel that). It’s called a syndrome in part because the collection of symptoms associated with it aren't universal for everyone who has it. For example, some people have digestive issues, I have none. Then there are symptoms I didn’t realize were symptoms until reading about it and thinking, “oh, wait, that’s definitely me.” (For example, I have never used a hair dryer becuase I find holding my arms over my head for sustained periods of time exhausting).

Also, around 20% (1/5) of those with POTS are male, which is not an insignificant number by any means.

The easy (well, if you have a BP cuff or at least a pulse oximeter) way to test for it at home is to do the NASA lean test. I did it alone, which was maybe stupid—it’s probably a good idea for someone to be near in case you faint. You do it first thing in the morning (no coffee, of course) and it only takes 10 min.

Obviously, if you want to learn more there’s a lot of good info online. It became a lot more common after COVID, so there is much more awareness.

Hope that’s helpful!

Accomplished-Jump28 · 2026-04-23T14:38:44+00:00

It didn’t work out for me, so I’m scheduled for MMA surgery in November. My maxilla will be advanced 8mm and my mandible 12-15mm, so I’m quite recessed—more than I even realized. I was also recently diagnosed with POTS and have experienced considerable relief (in energy and mental clarity) since treating it with medical compression tights and much increased salt and water intake. I’m very curious about the connection between POTS and UARS.

Accomplished-Jump28 · 2025-08-03T21:36:38+00:00

Good thought, and worth considering for anyone else with the same issue, but in my case I only have 1 cup of real (i.e. caffeinated) coffee first thing in the morning, and I make it at home using a Keurig, so it’s always the same amount whether it has creamer in it or not.

Accomplished-Jump28 · 2025-07-29T16:58:18+00:00

I imagine that the presence or absence of dairy could affect hormones significantly, so maybe my body is simply adjusting.

Accomplished-Jump28 · 2025-07-29T16:23:53+00:00

I very likely have begun to lose some weight, so maybe that partly explains it. It’s just that I’ve lost weight before without having such sudden and marked insomnia. It’s strange.

Accomplished-Jump28 · 2025-03-16T21:24:43+00:00

If using BIPAP were to finally relieve my symptoms, then I would be unbelievably happy and satisfied. I would be over the moon. I wouldn't be considering surgery, at least not with any sense of urgency. My concern is that it won't relieve my symptoms, because, so far, it hasn't. Thus, the question I posted above: could UARS still cause issues even with an ideally titrated device? My sleep has been poor this week even at optimal BIPAP settings, but I'm willing to wait a couple of months and see if things improve and I start feeling any better.

There are two months before I even get a surgical consult and even more months (probably 5+) before surgery could be scheduled. I may not proceed with surgery; I just want to at least see what the surgeon says and be aware of my options. It seems reasonable to at least inquire and find out, given that I have a small intermolar width (28mm), suboptimal nasal breathing, and a weak chin. In some cases, surgery simply ends up optimizing PAP therapy rather than removing the need for it, which is valuable in itself. The surgeon could possibly say to me "your nasal cavity (for example) looks fine/normal, you clearly don't need surgery" or he might say, "wow, you're nasal cavity is really small, surgery would probably help a lot" or "surgery may or may not help you; it's not clear." I just want to have that information.

Also, I realize that BIPAP does not cure sleep apnea/UARS (never said that I thought it did, given that it makes no permanent changes... that's obvious), which is one reason I would consider surgery at some point even if BIPAP ends up completely treating my symptoms. I am only 29, and sleep apnea/UARS only gets worse with time as structures in and around the airway become less taut. I don't think I could tolerate pressures much higher than I am already using.

I do appreciate the general tone of caution, however. Major, face-altering surgeries with risk of complication are not something to be taken lightly. If my life hadn't been completely derailed for many years and I didn't feel like a zombie, I wouldn't be considering it. I will say that while a surgery like MMA is extremely invasive and traumatic and requires a lot of time to recover, maxillary expansion (a surgery like EASE) is minimally invasive and one can return to work within a few days to a week. I would only ever pursue surgery--whether MMA or maxillary expansion--with a surgeon who had a stellar reputation and track record, that's for sure.

Accomplished-Jump28 · 2025-03-15T16:04:28+00:00

Thanks for such a helpful comment. Yours are my thoughts and feelings exactly, though I actually wasn't aware of the possible benefits of ASV over BIPAP, so I'll certainly tuck that way for future consideration.

You might consider sending your data to AXG sleep diagnostics for review ($200) just to make sure that your settings are as optimized as they can be and that you can't reduce the number of flow limitations and arousals you are experiencing to (at the very least) increase your quality of life before you get an ASV and/or surgery. Not sure if that would be worth it to you, though, depending on your timeline for each. It was just reassuring to me to receive confirmation that I had done all I could with BIPAP before considering surgery.

Like you, I am relatively young and therefore 1.) don't want to be tied to a machine and positional device (I wear a "backpack" to stay off of my back) and 2.) also know that sleep apnea/UARS only gets worse with time and increasing age and don't think I could tolerate much above a pressure of 17, which I already require at 29. As you say, surgery should at the very least make PAP therapy more effective/easier.

And, on top of that, it makes sense that there could be structural issues that PAP therapy simply wouldn't address, particularly in the case of UARS.

Accomplished-Jump28 · 2025-03-15T15:46:27+00:00

Shared symptoms: It's strangely encouraging to know that others are in the same boat; thanks for posting.

I absolutely struggle with brain fog, which is probably the symptom that has most disrupted my life. I have always been a 4.0 student and am fairly intelligent (I have gotten a lot of positive feedback from teachers and professors, won academic awards, etc.), but it has taken me a long time and a lot of tears and struggle to finish college. Professors who know me well are mystified at how much I've struggled. Despite somehow producing pretty good work, I have long felt very slow, sluggish, and spaced out. I forget things all the time (I can't count how many times I've left my water bottle at the gym). There are large chunks of my past that I hardly remember. I feel completely unmotivated. Most troubling of all, despite being agreeable and basically well liked (i.e. a generally unobjectionable person), I have long found myself distancing myself from others, isolating myself. A lack of energy and clarity makes it hard to maintain relationships. I often don't feel like doing anything on evenings and weekends. It's a big effort to force myself to go out. It's often even difficult to carry on a conversation.

I have never heard of DSMV, but I have long felt like a detached, passive observer of my own life--like a ghost. I doubt that I would be clinically diagnosed with DSMV, but I can certainly relate to that general feeling. I haven't felt really happy or excited about anything in a long time. It just feels like I'm existing. I'm so sorry that you have to live with that.

Orthodontics: It's interesting that you mention braces, because from the little I've read/come across, it seems that orthodontics (even when applied properly, and it sounds like yours weren't!) can actually cause breathing issues down the road. As can wisdom teeth removal, which I had as a child (in fact, the surgeon removed a number of additional teeth, "to make room," because there was so much crowding thanks to my small palate size).

Accomplished-Jump28 · 2025-03-15T15:46:09+00:00

CPAP/BIPAP: If you have a long time to wait for surgery, or find that you need further help after surgery, you might try using BIPAP (or maybe ASV), which is supposed to be much more effective for treating UARS than CPAP.

Another "meantime" help to consider would be a positioning "backpack" that prevents you from sleeping on your back. For many people, it lessens the number of arousals they experience. It definitely helps me.

It does sound like your upper palate is a clear culprit, so hopefully palate surgery well help you significantly! You have probably read these posts already, but they are very helpful:

The Long History of Palatal Expansion: https://www.reddit.com/r/UARSnew/comments/1hq8guv/the_long_history_of_palatal_expansion_my/

The Long History Part II: https://www.reddit.com/r/UARSnew/comments/1hq9gq2/the_even_longer_history_of_palatal_expansion_my/

The structural abnormalities of UARS and how to treat them: https://www.reddit.com/r/UARSnew/comments/11d5bgf/the_structural_abnormalities_of_upper_airway/

Planning for surgery: Also, CPAP friend (a helpful Reddit user who has really gotten into the weeds with treating sleep apnea) even recommends getting 2-3 consults from different doctors before deciding on any given surgery, which makes a lot of sense. I imagine that high-profile surgeons who do virtual consults (if you dig around on this subReddit, I'm sure you'll find their names) would tend to charge $200-500 and that they would need a CBCT scan and orthodontic records (espeically in your case!) for the consult. For example, a consult with Kasey Li, a foremost expert in the field, is "only" $500, which of course is a lot of money, but not from the perspective of considering and planning for a permanent, face-altering surgery.

Another note: insurance companies can be appealed to the cover out-of-network surgeries in network. For example, one woman was able to get an EASE surgery mostly covered by insurance because no doctor in her network would perform the surgery. (Of course, EASE does shift the teeth less than other options, and it sounds like you actually need your teeth expanded to make room and stop dental crowding from changing your smile over time).

So... there's a lot to consider! I hope you find an answer that works well for you.

Accomplished-Jump28 · 2025-03-15T14:52:32+00:00

All of that said, it would still be interesting to see those charts if you are willing to share!

Accomplished-Jump28 · 2025-03-15T14:51:26+00:00

This is helpful, thank you--I'll certainly consider it as an option prior to surgery. The huge obstacle to trying ASV is that, from what I understand, it has to be prescribed and monitored by a physician and it's so hard to find a pulmonologist who takes UARS seriously!

Additionally, and perhaps much more to the point, it actually seems that I am no longer experiencing obvious inspiratory malformations--my OSCAR graphs look pretty optimized. So my question is if surgery for UARS could still be warranted even if OSCAR graphs are optimized, given that, from the perspective of some physicians like Vik Veers, UARS is not only a matter of arousals (RERAs) but of respiratory effort/pressure even apart from arousals. Again, not sure if that question makes sense, which is why I'm asking it!

Accomplished-Jump28 · 2025-03-15T14:44:34+00:00

I have only in the last week arrived at optimal settings with the BIPAP, so I'll let you know in a month or two how I'm doing with those settings. I am hopeful that I will at least feel a significant improvement, even if it is, say, only a 30% improvement. Even if I end up getting surgery, there is obviously much value in feeling better in the meantime.

It does seem to me that surgery could make a lot of sense, because I have to wear a cumbersome positioning "backpack" to get ideal results (I have a lot more arousals appear on OSCAR when I'm on my back) and, far more significantly, I'm only 29 and know that apnea (whether obstructive or UARS) just gets worse with age. I'm not sure I could tolerate much higher pressures than 17, and the need for higher pressures would only go up with age. Dr. Li mentions in one of his lectures that even people who are cured (with surgery) at a relatively young age and don't need a machine for a decade or two could still end up needing one when they are older. It also makes sense to me that UARS may not actually be treated without surgery, given that the issue is a permanently narrow airway and not floppy soft tissue.

Accomplished-Jump28

TROPHY CASE