I’ve vented about some of the symptoms in the weight loss and Ozempic threads, and looked around the boards and have not found a POTS-specific thread or even much mention of it at all.
In hindsight, I’ve been showing symptoms of this for quite some time - I recall a couple bouts of severe dizziness (due to heat, most likely) when I was quite young, and in the past 10 years, have become intolerant of standing in long lines. It’s been getting worse in recent years - e.g. I can grocery shop but if the line is too long, I’m doomed.
And with significant recent weight loss, and associated drop in blood pressure which may have been masking some of the symptoms, it’s to the point of being genuinely disabling. Shopping is iffy at best. I would not dare do a full grocery run.
I’m not formally diagnosed, at least not yet; I see a cardiologist next month and I have an EKG this week. It almost doesn’t matter; if it walks like a duck, and quacks like a duck, I need to treat it like a duck (obviously, unless something else is identified). And monitoring my own pulse on standing for 10-15 minutes, it’s pretty much spot-on. I’m taking measures to make sure I get enough electrolytes and fluid in general. Quite weird to be told to consume MORE salt after all these years of “salt is bad for your BP!”.
My cousin’s kid (now in her early 20’s) has POTS, and I’m monitoring my own adolescent kid because she’s mentioned getting dizzy when she stands up sometimes, and she’s about the age where my cousin’s child started reporting issues… My kid does seem not to complain as much about it when I get on her case about drinking more water and making sure she’s got electrolytes, and I am also trying to increase her potassium intake.
Huh, being intolerant of standing is something that has always been a problem for me (and my kid as well). I thought it was because my feet get tired, which is also true, but I think also just my whole body starts feeling very fatigued. Are you OK with walking (as opposed to standing)? I can walk for a lot longer than I can stand still. I’ve never understood people who use a standing desk! Hm, maybe I should look into this for myself as well…
That seems to be somewhat common. Certainly true for me - e.g. the grocery store thing. I may not feel GREAT as I’m walking around (and that has definitely gotten worse in recent months), but I don’t start feeling really wretched until I am checking out.
I was at the doctor last week - she finally took it more seriously when I said I’d grayed out so badly once that I actually fell - and while waiting to see her, I looked at my Fitbit while sitting. 91. Then I stood up - and it gradually hit 124. It dropped something like 10 when I paced around the (very small) exam room a bit.
I always had the “stand up suddenly, vision goes gray for a second” thing growing up - and when my BP has been under better control, this is actually a good sign. But I think I’ve gone past that! I would not dare do any serious grocery shopping - I dashed in last week, early in the morning, for a few things and felt crummy the whole time. I’ve cut two clothes-shopping trips quite short (and I really NEED new things). For some reason, when you go pale and use your elbow on the counter to prop your head up, this alarms store clerks.
Good for you for recognizing this possibility with your kid. It tends to get dismissed by doctors far too much. My daughter (27) actually likely has POTS and they refuse to give her that diagnosis. I think their argument is “labeling it won’t fix it”… but it might, for example, allow for workplace accommodations like, say, a chair (she’s a cashier). They did give her a prescription for a beta blocker, which she says helps. Electrolytes and plenty of fluids are certainly the first line of defense.
I had a brainstorm the other day: look at my Fitbit heart rate history for days where I knew I didn’t feel good, and see if I see a heart rate spike. Spot on, for several recent days.
Then last night it occurred to me that I could look at my Google Maps timeline, to act as a reminder for where I may have gone / what I may have done, on days where I see such a spike. As in “pulse hit 140, what was I doing???” and have had several such spikes explained.
Of course there was the day where it showed a brief very high spike, where I didn’t leave the house…
I did see a cardiologist last week. I scheduled it even before I had the EKG. That was somewhat interesting; the tech did the EKG, then called someone in to check something. Then she redid the reading. I don’t know what she thought was wrong, but the other person said everything was hooked up right.
I got a call back later from the primary care doc (whom I have not met). He said #1 was fine, but #2 showed “atrial flutter” - which is not the same as atrial fibrillation, but could cause some of the same risks. He did a fine job of scaring me, including “if you feel bad at all, go to the ER!”.
I made a decision to NOT freak out. It was clearly something intermittent (one of the reasons I HATE those 30-second EKGs).
At the cardio this week (and at the gyn that same morning), it turns out my BP was pretty high (as was my pulse) - so I’m back on the beta blocker - which means my pulse has been a bit steadier. I have not yet tried shopping or anything to see if it spikes - it should, given that some of the spikes were when I was still on it. No atrial flutter was spotted on the EKG there - but again, if it’s a really intermittent thing, that’s not that big a surprise.
And I’m now sporting a monitor - much more streamlined than the old “carry a big bag with you” Holter monitor. This is maybe as big in diameter as a quarter - though thicker - and sticks onto my chest with big clear plastic. I get to wear it for 5 days, then mail it back. I’m going to try to do some challenging activities (groceries!! Clothes!!!) and see if it freaks out. I keep forgetting I have it on.
Drinking enough liquid is a real problem. I genuinely cannot chug enough, with the slowed stomach emptying from Ozempic.
It is indeed a Zio! I keep forgetting it’s there. I had a traditional Holter, 10+ years back (the kind with the device in basically a satchel) and this is much more convenient.
Doc had said 7 days, when I saw her, but apparently she told the tech 5 days (I may send a message to check that; the tech said she did confirm with the doc).
How does a strain echocardiogram differ from a regular one? I’ve had a regular echo - 2 years back and 8 years before that.
I’ve heard good things about Nuun, but one of my problems is forcing myself to drink enough liquid. I bought a smoothie 10 hours ago and have not finished it yet (to be fair, the yogurt bowl I got at the same time is still occupying most of my stomach space).
What would the KardiaMobile do, that the Zio does not? Is there some advantage to being able to spot-check one’s heart rhythm? The FitBit is doing well enough in estimating my pulse (with the understanding that it’s not medical grade - but it does show trends).
I struggle to explain the difference well and simply.
Maybe the best way to say it is that strain echocardiography is more sensitive and can more readily pick up the early, and more subtle, signs of a heart that isn’t acting exactly normally.
One analogy might be that it’s the difference between an X-ray and a CT scan. The latter can pick up a whole lot more information than the former.
It’s really more a question of continuing to monitor your heart’s rhythm after the Zio patch results are back, and – primarily – if the Zio patch does detect abnormal rhythms.
If you feel l ike the Zio probably caught you on a “good week,” then a KardiaMobile is kind of the at-home version that might allow you to capture arrhythmias after the Zio test, and can allow you to forward the rhythm to either one of Zio’s cardiologists or your own cardiologist or electrophysiologist (heart rhythm specialist).
If it were me …
If the Zio did detect arrhythmias, I’d strongly consider the KardiaMobile after;
If the Zio didn’t detect any arrhythmias, but you think that was a fluke, I’d still probably consider the Kardia
But a strength of the Zio, and a weakness of the Kardia, is that the Zio captures every beat of your heart. The Kardia, in effect, is an at-home EKG, but it is something you use to try to capture what you think might be an arrhythmia that makes you symptomatic.
It isn’t watching your rhythm 24/7 (the way the Zio does).
I am truly baffled by routine EKGs taking longer to set up, than to record. Too much chance of false negatives, if your issue is something that happens even < 50% of the time (as I found quite recently). The Zio stands less of a chance of that, and at least the KardioMobile would have more opportunities to catch something than the 30 second EKG.
I have POTS with the classic combo of hEDS and long covid.
Always, or at least since my early teens, I’m dizzy when I get up. It ranges from mildly dizzy, then it goes grey tunnel, then black and a downwards trajectory, then black + down + I can’t speak, then sound goes, then black + down + no hearing + tingly lips.
I got a few days with stickers from the cardiologist, who thought that POTS was likely but said that, as we just think I probably have it and there’s no real treatment anyway, we didn’t need to do the table test.
What helps for me:
Salt & liquids
ADHD meds
Compression socks if I need to stand
Swimming was nice exercise
Being really fit and strong helped a lot (I should try not having long covid lol)
I think maybe cold showers helped? I did that for a while… Should maybe try again…
My husband is good at catching me which is nicer than ending up on the floor. Also better than people suggesting I sit down if I’m dizzy, which will just start me over again when I get up the second time. Grumble grumble.
Hah - until quite recently, I outweighed my husband by quite a bit. I still do, but not by that much. Still, I’d hate for him to have to catch me. Luckily, the only time I’ve ever actually keeled over was on a crowded Metro train (got me a seat, though I do not recommend this as a routine tactic).
And yeah, the “sit down / get dizzy again when you stand” is kinda the conundrum. You have to sit down, or fall down. And eventually you have to stand up again.
I went shopping last night for a few new garments. That’s been one of my big no-can-do activities lately, and I wanted to try it while wearing the heart monitor. Sure enough, as it was time to check out, there was a long line and I knew I could not stand in line. My husband had come along - so I made the poor fellow stand in line while I ducked into the fitting room and sat down until it was our turn.
Interesting that you mentioned hEDS (hypermobile Ehlers-Danlos Syndrome). A friend has for years been trying to convince me that I have EDS, solely due to my history of poor-to-nonexistent response to local anesthetics. I’m not buying it, if for no other reason than I’m about as far from hypermobile as you can get and still be able to move at all. But there does seem to be a correlation between it and POTS (per Doctor Google anyway). I’m sure long COVID was just the perfect cherry on the i-feel-crappy sundae.
Ah usually I outsmart my POTS with cunning and guile! You see, from the sofa I get up and in the second before it properly hits I can make it to the door post to go into the hall or to the table when headed to the kitchen. Then lean there until it passes and I continue. Take that, dizziness!
There are also types that don’t make you hyper mobile! I think my mum has some sort of vascular type, not officially diagnosed but her GP said she suspects it. Diagnosis, like with POTS, is a bit useless. It’s an expensive test and if you don’t have actual EDS but you have the symptoms, it’s basically the same, in that you have the exact same risks etc. In the Netherlands (where I currently live) they only test 50% of suspected cases and only if there is a reason to test and the wait is 2 years. Then if the outcome is you don’t have EDS but you have the symptoms, you get the same treatment: nothing. It’s just data gathering & research, I suppose.
Nevertheless, it’s worth at least considering the other types, just to know your own body better. Look at what it correlates with (like long covid and general fatigue) and see what you recognise, maybe what you should look out for. I wonder if any of the other types fit for you, surely your friend isn’t mentioning it for nothing…?
Me, I’m a freak but it makes for good party tricks. I can jump through my arms and bring them back to the front over my head like King Louie in The Jungle Book. Physio therapists always find me a fun experiment, they have the trainees come over to look at how I bend or to see how quickly they can see I’m hyper mobile.
It’s all related. When I was 14, I was left with ME/cfs after Epstein-Barr virus. It was when I started reading the Dope, though I didn’t sign up for years. I got better with time. Then the same thing after my second bout of very mild covid. It’s the exact same thing. I did hyperbaric oxygen therapy, crowdsourced the €12.000 it cost. It helped tremendously for energy (there were days in bed that I couldn’t lift my head to drink, it was that bad). It didn’t fix my immune problems. The internist said: it’s like you have HIV and if you did, I could treat you. But we can’t find anything to treat. In the first quarter of 2024 I had the flu 5x and it was a pretty big set back for my energy levels. I’m so pissed that HBOT works for me but isn’t covered by insurance. I think I’m just going to need it semi-regularly, every time my body caves after viruses.
POTS is just the background noise of life, I’m pretty used to living with it and my husband is used to catching me. I wouldn’t trade my hypermobility for not having hEDS, it’s my body and when I see how other people don’t bend it looks uncomfortable to me. But the chronic fatigue and immune issues, that I could do without. I wish I could have faith that they’re looking into it, but patients are mostly women and I think the structure of the medical world just isn’t set up for this stuff. Grumble grumble.
Welp, I see the cardiologist Thursday morning. I was able to look at my monitoring results online, and while most of it is just, well, meaningless squiggles, I noted that the squiggles were particularly chaotic on two specific evenings where I was out and about and standing up for more than a few minutes.
A very unwelcome development is that my stamina for walking any distance at all has gone through the sub-basement. We just spent a weekend with family in a very flat town, and I had trouble walking 2 blocks. I went up one flight of stairs and nearly passed out. I had to haul myself upstairs last night when we got home, and have avoided going downstairs all day to avoid needing to go back UP.
The cardiologist wasn’t too worried about the monitoring results - apparently 33ish SVTs in a week aren’t that crazy. But especially given how crappy I’m feeling, the plan is:
bump up my beta blocker dose to twice a day (even at that, it’s still pretty low)
Stress echocardiogram in a couple weeks
Then decide where to go next, including possible chest CT and possible referral to a clinic that specializes in evaluating / dealing with POTS if appropriate. She didn’t think that going to cardiac rehab was the right thing until the stress echo was done.
@Mama_Zappa It’s been a while but I was still wondering if the compression stockings or — preferably! — full body compression garments are an option for you or if you’ve tried it? You mentioned standing in line and going upstairs, you might benefit from the compression? Compression helps me quite a bit, it’s also why I feel so good swimming.
I haven’t really tried them yet - I have a pair of knee-high compression socks that I tend to wear when on long driving trips, but I do need to give them a try for routine walking. I’ve found that my legs feel surprisingly fatigued when I walk any distance.
And my stress echocardiogram was kind of a bust - I was not able to tolerate it long enough to get into the target range, so we’re no closer to a diagnosis. Next steps are a cardiac CT scan, and likely some labs to rule out any nutritional / metabolic issues.
Minor(ish) update to this: after lots more testing including a cardiac CT and a tilt table, I’m not officially a POTSie; the dx is, at the moment, orthostatic hypotension.
Which I’ve always had, to some degree, but it’s gotten a lot worse (they stopped the tilt table when a) my BP plummeted, and b) I started to grey out). Doc still wants to attempt one more stress test just to be sure of things.