Water Lover

@Sarah Tee I’m so happy for you that you are finally going to be able to get this testing! Congratulations for sticking with it and advocating for yourself. It shouldn’t be such an accomplishment, but I know it is. I’ll be really interested to hear about the results, whenever it happens.

Yes, I experience this sometimes. It's definitely related to meal size, and, much as I wish it weren't, does seem to be carb-related. But the factor that's bigger than size or carb content is time upright around the meal. I can deal with larger dinners at home with (usually) lesser symptoms because I've often been reclining before the meal, and once I'm done I can go lie on the couch. At home I also sometimes sit at the table in compensatory postures (legs tucked up under me, or on a bad day one leg tucked under me and one leg with my foot on the chair and my knee up above the table!). I've done that instinctively all my life—my parents tried to work on getting me to sit more normally when I was a kid. It was interesting to find out there's a reason I do it. Dinners out are harder because I've had to sit up driving to/from the restaurant, have to sit properly through the meal (can't get away with weird postures!), and the meal itself takes longer. Work dinners and things like that can get brutal—I become progressively less able to carry on conversation as I go because the pressure in my head is building up and my heart is pounding and I'm just trying to focus on keeping it together until I can leave! Lunch on days I work in the office (I am in a profession where partial WFH is possible, but I have to do several days in office each week) can be rough for similar reasons: I'm sitting up in a chair or standing for hours before lunch and hours after. That's where the small meals, low carb thing particularly seems to pay off some. It still gets worse, but not as much worse. (I've also started sometimes sitting on the floor around lunchtime—I'm in a space that's private enough that I can get away with that, although I get some odd looks sometimes!) So if you haven't, I totally recommend lying down after the meal (and perhaps a bit before, if possible). It may help! (I'll note that I am very sensitive to sitting upright in a chair, which I know not everyone is, so YMMV.)

Yes, make sure they’re aware ahead of time. Also, specifically ask to be put on fluids as soon as you arrive—make this request to everyone you possible can: your gastroenterologist, their scheduler, any nurse who calls with instructions ahead of the procedure, basically anyone you talk to. I would think salt-loading and extra fluids the day before and following the procedure would likely be helpful as well, though you could check with your doctor about that. (I’d make sure they’re aware that you’re on a high-sodium diet, too.) I have EoE, which was discovered on my way to my POTS diagnosis. (I’m lucky in that my EoE is PPI-responsive.) My first and worst symptoms of overall health problems were GI, and I’m still not sure whether those were actually caused by the EoE, or whether they were dysautonomia-related and the EoE discovery was incidental; I wasn’t experiencing dysphagia, just a smorgasbord of GI symptoms, and the endoscopy that found the EoE was exploratory. All my endoscopies involved propofol sedation. (Not sure how specifically they will be putting you under, but at least it’s definitely not general endotracheal anesthesia—which I have had a problem with—given the nature of the procedure.) After my first two endoscopies, which both came before my POTS diagnosis, I had worsening cardiac symptoms for a couple of days—chest pain, racing heart, all that. It was all very alarming, because I didn’t know about POTS yet and was having pronounced heart symptoms. I think all that was caused by two things. One was not drinking enough fluid: being off fluid for, in my case, 10+ hours before the endoscopy and then not drinking enough afterwards (I obviously wasn’t drinking fluids then at the rate I am now). The other is that my gastroenterologist believes I have a hypersensitive GI tract and felt more irritation/pain than normal from the procedure, which I experienced as chest pain. When I called the urgent post-procedure care line about chest pain, after talking through it some, my doctor recommended Gaviscon liquid, which was a godsend: it calmed my esophagus and that helped calm my heart. I’ve started recommending to anyone who’s going to have an endoscopy that they have a bottle of Gaviscon on hand in case. My third time out (a recheck after adjusting PPI dosage), which was after my POTS diagnosis, I did extra fluids the day before (>200 oz; my usual is 150+), and had asked to be put on IV fluids as soon as I arrived, which was done. That time was so much better. I also think my esophagus was calmer that time around, both because it had had longer to heal from the EoE and because my gastroenterologist had put me on a TCA to help with the hypersensitivity. Anyway, very little pain from that one, and the day following that procedure was the best I felt for quite a long time on either side—I think because of the IV fluids, and also, coming off propofol feels nice: it always makes me feel very clear-headed (even though I guess one isn’t, which is why they warn you not to make major decisions, etc.). Those are just my experiences, and I am not as medication-sensitive as many, so it may look different for you. I’d echo @Pistol on the importance of making sure all the providers, and especially the anesthesiologist or anesthetist, is aware of the condition. (After POTS diagnosis my gastroenterologist actually required me to get cardiac clearance before the next endoscopy.) And fluids—drink them when permitted, and ask to get out on IV as early as you can. Good luck with the procedure, @Marabi! I think things will go fine, and I hope you get helpful answers.

Also pointing out for this thread that EDS is not the only type of connective tissue disorder. Aortic aneurysm is one of the signs that, in someone of the “right” build (tall/skinny/long-limbed), might be suggestive of Marfan syndrome. My doctor says there’s a general connection between connective tissue disorder and dysautonomia; it’s not just limited to EDS. So there are multiple possible causes even among inherited disorders, not to mention the aneurysms that “just happen.”

I have issues with long car trips, and I think it’s about posture. My symptoms are triggered by sitting up as well as standing; I don’t have issues walking long distances, but will start feeling bad after a few minutes sitting upright in a straight-backed chair. Over the years I habitually adopted lots of ways to compensate: sitting with my legs tucked under me or stretched out, sitting sideways in a chair, slouching back, fidgeting/shifting a lot. There’s something about car seats that is uniquely immobilizing and forces you upright, and I think that is a lot of what makes long car rides tough. (Worse when driving, because then you’re even more limited.)

Mine has been low—20 when first tested. My GP put me on 800 IU a day (though I upped it myself to 1000 since those capsules are easier to get). Over the first six months it made it up to about 25. I don’t know what’s happened in the last six as I haven’t had any reason for blood tests. Even at 20, my GP was not overly concerned. That was before my POTS diagnosis, when we were trying to figure out what was going on. He said that at that level he would recommend supplementation, but he thought my levels were unlikely to be causing any of my symptoms. I’m interested that some of you are being supplemented so much more aggressively. I think my GP is pretty conservative about supplementation, etc.

I’ve been on Pantoprazole for a year and have never experienced any side effects. Before getting switched to that I did a couple of weeks on omeprazole, which seemed to be causing headaches.

In addition to the NormaLyte already recommended by @yabu, for anyone who isn’t avoiding sugar and doesn’t feel up to mixing your own like @albertspa, I want to mention TriOral ORS—I haven’t seen it get mentioned much in dysautonomia circles, but it’s been the best, most cost-effective option for me. It’s based on the WHO formula. Each packet makes a liter of solution and provides 1695mg of sodium. I generally drink 2L a day, at two separate times—if I’m sitting, typically over the course of an hour or two, but if I go for a walk of even as much as half a mile I’m likely to drink the whole liter while walking. On a day when I’ve sweated a lot or think I really need more salt, I will occasionally go up to 3L. I generally try to drink a liter of plain water in between rounds of TriOral. (My normal total fluid intake is 4.5 to 5L, though higher on those sweaty days.) Anyway, the reason I’m mentioning it is because in the US you can get a box of 100 packets on Amazon for $40, which is a better value than any other brand I’ve found. I should mention that I use the unflavored, which is part of how I ended up on this brand; I started off using flavored brands (Liquid IV, LMNT), but it’s hard to find a flavored brand that doesn’t include non-sugar sweeteners like stevia or sucralose; I can’t stand the taste of most non-sugar sweeteners, and some seem to irritate my stomach. The unflavored TriOral solution doesn’t taste objectionable: barely sweet, lightly salty. You can tell it’s not plain water, but really it doesn’t taste like much of anything. I hardly notice it and think by now I just associate it with feeling hydrated. I haven’t tried it yet, but I think it would probably make a really nice fruit-infused water (though I expect you would need either to infuse the water and then strain out the fruit before mixing the solution, or else make sure to eat the fruit, because I expect you’d lose sodium otherwise). Anyway, no good for those of you who need to avoid glucose, but it’s something that works for me and is worth a look if sugar isn’t a particular concern.

My understanding is that the recommendation to limit carbs is to prevent the diversion of blood to the digestive system; I wondered whether, given that glucose is a simple carbohydrate that does not have to be broken down (only processed by the liver for storage), it might not cause as much blood diversion as complex carbohydrates. But while I was looking around to see if that was plausible (not a biology whiz!), I found that there is at least one recent study that associates POTS with insulin resistance and suggests that the body’s response to glucose (the release of a specific peptide) may cause the dilation of splanchnic vessels, and thus directly lead to orthostatic symptoms. So it may just all be a matter of tradeoffs in the end.

I also have tinnitus. It may not be quite constant—there are times when I do not notice it—but it is most of the time. My impression is that it has been worsening over time, though it is not at this point interfering with my hearing and I tolerate it. I’ve also noticed the connection with flares—in fact I’m experiencing worse than usual symptoms today, and I remember noticing last night that my tinnitus was worse than usual. Tinnitus as early alert system?

Total sympathy—doesn’t it seem like such a bother to have to medicate for things that aren’t dysautonomia-related, and then worry about/deal with the side effects of those on top of the normal stuff? I had to do a short course of methylprednisolone a few months ago due to jaw inflammation after some orthodontic changes. It was amping up my agitation (with no extra energy!), but also, I was advised by my GP that I needed to cut my salt consumption back to normal (for other people) levels while I was on it. I’m not sure whether it was the drug itself or abruptly cutting my salt, but a few days into the steroids, I started having ectopic heartbeats, which are not a normal symptom for me. Fortunately, everything (heart and mood) went back to normal really quickly, within a day or two of finishing the course. You’re almost there!

No problem! I’ll add the caveat that I am not a fainter and have POTS with symptoms that are on the mild end compared to many on here, so I don’t know how they will stand up to more serious conditions. But they are so much more comfortable than other options that if you can afford a pair I think it’s at least worth trying!

There is indeed shaping underwear for men. Spanx Ultra Sculpt boxer briefs have a quite decent-feeling level of abdominal compression. (They aren’t cheap, but are vastly superior to the less expensive brands I’ve tried, largely because they don’t bunch up around the top.) For abdominal-only compression for men, it’s also worth trying compression undershirts; they seem to do less than the briefs (and obviously don’t offer any buttock/thigh compression), but some do offer enough abdominal compression that it feels to me like it makes a difference.

Yes, I've observed that on nights when I've had less sleep (under 6 hours, say), I have substantially greater HR increases in response to standing. It's also the case for me that on those poorly rested days, I'm more likely to show a high HR while walking, while on a typical day my HR while walking is moderate. However, I've not been sure whether it's all about rest. Often, if I've had a very poor night's rest, it's because I started being symptomatic the night before (buzzing sensation, perhaps mild tremors, things like that). So I've wondered before if low sleep is the direct cause of the increased HR change, or if they are both reflections of another process in my body.

@erinlia I also don’t know what’s normal for kids that age, but it’s worth noting that standard diagnostic criteria require an HR increase of 40 BPM for children and adolescents, so based on your home test she would not be close to diagnosable. (Though not everyone agrees with having different HR criteria for youths—good discussion with the authors of a recent review on pediatric POTS in this episode of the POTSCast. You may well find it interesting in general given your concerns.) But as you know well, lots of us show signs going back to childhood. I suspect I would not have been diagnosable as a teenager, but I think I had “pre-POTS,” including experiences of presyncope and orthostatic intolerance that were manageable enough that I never told anyone about them. It’s definitely worth mentioning to her doctor if you still accompany her into appointments, or encouraging her to mention if you don’t. And you can definitely try things like extra hydration; I believe I was usually under-hydrated as a teen.

Just ran across this slightly old thread. I am not seeing the same thing as @edriscoll on the Cleveland Clinic site—it looks to me as though the site is listing dysautonomia as a possible contraindication for vagus nerve stimulation (it looks like they’re describing specifically implantable devices). There was a clinical trial being done by Drs. Kem and Stavrakis at Oklahoma on transcutaneous vagal stimulation for POTS that was scheduled to be completed in early 2022, but it doesn’t appear that any results have been published; I’m not sure if Dr. Kem’s death affected the study. It could be worth getting in touch with Dr. Stavrakis to see if there’s any more info. (Just for kicks, Dr. Stavrakis is a coauthor on a paper reporting that vagal stimulation is successful in treating autoantibody-mediated POTS in a rabbit model—I actually had no idea there were any animal models of POTS, so that’s fascinating.)

Echoing what @Sarah Tee said. I’m recently diagnosed with POTS, and in trying to figure out what was going on with me it took a bit to realize the orthostatic piece because I had learned over years to compensate for this by standing still as little as possible. The HR increase with stillness/drop with walking is very much a pattern for me. I notice it when I’m walking my dog: when he stops for more than a couple of seconds to smell something, I can see on my Apple Watch that my HR starts to rise; as soon as we’re moving again, it starts back down. A difference of 20-25 BPM sounds similar to what I often see, though it can be less than that on a good day (or on an especially bad day, when moving doesn’t help as much).

For others who find this thread, I'll sort of echo RecipeForDisaster's experience that they seem only to be looking for particularly dangerous stuff, but my own experiences give it a bit of a positive spin: I'd just say, don't be too worried about what the Zio does or doesn't show. While undiagnosed, I was referred to a cardiologist for my tachycardia. I wore a Zio for a week and had a stress test. I also had some anxiety about wanting my Zio data to be significant, and my heart actually cooperated—I had unusually frequent presyncope and some notable high HR and chest pain incidents that week. All that amounted to nothing, but ticking that box apparently cleared enough other things out of the way to put me in the position to get diagnosed. Both the monitor and the stress test came back basically unremarkable: my cardiologist acknowledged that my HR was sometimes elevated, but said my averages were within range for my age and there were no significant arrhythmias. (I was really taken aback by his disinterest in the high HR itself: I was already above 130 when I *started* my stress test, from no activity! That apparently wasn't cause for concern.) So the Zio basically produced no information and was part of the conclusion that there are no issues with my heart itself. But the follow-up from that is what led directly to my diagnosis: in our follow-up discussion I talked about presyncope, as well as thirst and habitually consuming large volumes of water, and speculated on standing as a trigger, and those factors led my cardiologist to suggest POTS and eventually led to my getting a TTT and a POTS diagnosis. The monitoring, in my case, basically seems to have been a simpler box to check which allowed us to move on to more complicated things.

The childhood idea is super interesting. I'm recently diagnosed with POTS (late 30s), but suspect I've had POTS since my teenage years at least. I didn't drink a lot of water in my childhood: we had very strongly mineral-tasting water. I now find it extremely unpleasant to drink; I think I was a little more used to it then, but I still don't think I drank a lot of water. With meals I was given milk, which I did not like. And I'm still struck when I see my parents by how little they drink fluids. So I would guess my fluid intake was not terribly high. I had a lot of headaches as a kid/teen, with no cause ever identified. Looking back on that as an adult, I've long suspected that I was chronically dehydrated and that that was the reason for the headaches, though since my diagnosis I've wondered if it was POTS, which, as I say, I suspect I've had all along. Maybe in some sense it comes to the same thing. Interestingly, for most of my adult life, I've habitually drunk a lot of water. For a day when I'm feeling normal, around 100 oz is probably my floor, and sometimes I can go well above 200. (When I'm feeling bad I can have the tendency to drink less water, which is something I've got to watch.) I figure this is one of those unrecognized coping mechanisms. Even drinking that much, I'd be thirsty a lot of the time. One time, long before the symptoms that led to my diagnosis got bad enough to really pursue them, I mentioned to my doctor that I had to pee all the time. He referred me out to a urologist, who had me keep a volume log and then told me I was drinking too much water. "But I'm thirsty all the time," I told him. "Why is that and what do I do about it?" "Not my department," he told me, and it didn't go any further. That does bring up another thing about me and water related to what people were saying above--my body seems to process it differently at different times. Sometimes I have to pee constantly, my bladder feels irritated, and it's as though water is running right through me. At other times I have a more normal-feeling schedule despite the volume. My impression is that I'm more likely to have the water run right through me at times when I'm more symptomatic, though I haven't looked at that methodically. All the talk of IVs in this thread is also making me remember once when I went to the ER with severe stomach pain and vomiting. They didn't find anything, but I noticed that I felt waaaay better from being hooked up to the IV (got about two bags): not just that it helped with the stomach stuff, but I felt rejuvenated and in some ways better than I did in my day-to-day life. I've joked with my spouse for years about wishing I could just go get IVs whenever I wanted them. Only now realizing that's probably a POTS thing too!

I get them too. They were one of the last new symptoms I picked up before my (very recent) POTS diagnosis. I started describing it as "the core of my body quivering." I have this with two separate focuses: sometimes the quivering is just in my abdomen, and sometimes it goes up the entire center of my body, where I experience it most strongly in my chest. I have yet to identify any particular triggers; these do not appear to be linked to tachycardia or occur specifically while standing--they can appear when I'm just sitting comfortably. I sometimes wake up like this, too. It has become one of my more common symptoms. I wondered for a while whether I was experiencing actual tremors or simply the sensation of quivering with no actual movement. And I still wonder that a little, but I believe I'm actually shaking. I've seen a blanket I was sitting under shake, and also observed that something I was holding was shaking, though I usually cannot see any movement if I simply look at my limbs.