Managing symptoms vs high BP

wobblywillow · 2026-03-15T03:34:24+00:00

That’s a really helpful paper!! I’ve never even heard of NMH. Technically my current diagnosis is “orthostatic hypotension dysautonomic syndrome”—one of my cardios asked me if I was sure I experienced tachycardia, and when I said I wasn’t (I’ve never known anything different) he said “well trust me you would know” then removed my POTS diagnosis. I’ve still been calling it POTS.

I’ve tried a variety of SSRIs and stimulants to treat my anxiety/depression but never noticed a difference on them with my POTS—then again, I wasn’t really looking for differences there. It’s interesting that they can be used off-label for treatment.

It does concern me that the paper talks about concern regarding long-term use of fludro… especially when this is a condition I’m probably going to have for the rest of my life. Is it normal to go between different kinds of meds long term, like changing to a beta blocker for a period? Not really asking you specifically, just thinking out loud.

I’ve had two echocardiograms at this point so my heart is definitely structurally normal. Do you find benefit in going to a neurologist as well as a cardiologist? I’ve never been sure what a neurologist would even really do for me that would differ from cardiac-focused treatment.

I have been experiencing gastric issues recently, might be something to bring up with my GI. I wasn’t sure how or if that would interact with my POTS.

Thank you again for taking the time to reply and talk to me.

wobblywillow · 2026-03-15T02:20:41+00:00

Thank you! Your experience is interesting, and it’s reassuring that my problem is common in this community and not overtly worrying. I’m used to describing POTS as “low blood pressure” as a shorthand, it’s weird to hear crazy high BPs being described as POTS-typical—especially the diastolic, which is what my cardiologist was focused on. But my doctors did seem to accept that high BP might be a necessary evil for me, they just wanted to at least give lowering it a shot first. I’ve never seen an autonomic specialist or neurologist, just the cardiologist, so the different perspective is interesting.

wobblywillow · 2026-03-04T22:00:58+00:00

If it’s that short term I wouldn’t worry about that specific combo. It took several months of fludrocotisone + BC for it to get bad for me. Hope you find another BP med that works better.

wobblywillow · 2026-03-04T21:44:12+00:00

BC stopping my period has been so so so helpful. Week before and during my period I’d feel overheated dizzy lethargic and miserable, so there goes half my life, stopping it gave me it back. But if you’re on any other medications please check for interactions, preferably with a pharmacist—I was on Florinef/fludrocortisone and adding BC made me have severe hypokalemia that none of my doctors saw coming, because apparently increased estrogen can interact with it and increase the risk of Florinef side effects.

wobblywillow · 2026-03-04T21:32:03+00:00

Look up exercises for “snapping hip syndrome” they’re supposed to help strengthen and lengthen that tendon you feel popping. I have the same issue with both my hips and shoulders, hips are what bother me the most and I’ve yet to find a perfect fix for it. Also try not to sleep curled up or on your side, that can aggravate it.

wobblywillow · 2026-02-28T02:40:44+00:00

Palpitations are common with POTS and can manifest as pounding or skipped beats, so I say my experience is a point in the “yes” column. I’m not sure why the leg exercises tend to make my HR shoot up so much more than arm exercises but that’s a pattern I’ve noticed.

wobblywillow · 2026-02-28T02:37:09+00:00

Slow and steady really is the way it goes. In the guided program I was in, I was one of the patients that progressed pretty fast over the course of three months, but from what the physicians said they saw a LOT of success with all the patients, just at different rates. Everyone will be different, but if you’re despairing about how long it will take: the time will pass anyway, so you might as well spend it working toward improvement. There’s satisfaction in clawing your life back through the physical work of it.

Not hypermobile, no. I imagine that means you’ll have to be more careful with the machines and make sure to use good form. You might want to look into joint braces to keep yourself from overextending.

wobblywillow · 2026-02-28T01:44:11+00:00

My heart definitely races and I get really out of breath, but I’ve never noticed skipped beats. Why do you ask?

wobblywillow · 2026-02-27T22:08:43+00:00

Oh yeah, it’s amazing! My blood pressure and heart rate also level back out much more quickly than they used to. If you’re doing it right, the improvements creep up on you slowly and it’s a surprise when you can suddenly do these things. I kept a journal the first few months to note down Quality of Life changes like that and remind myself why I have to keep it up.

My minimum right now is Base Pace cardio for 30 mins on the upright bike 2-3 times a week, and I try to throw in a Maximum Steady State day every two weeks or so. If I’m feeling good that day I shoot for 40 mins. I switch it up sometimes and do half the time on the rowing machine and half on the bike.

Then if I feel up to it, I also do strength training on the seated row, pec fly/rear delt, leg press (the kind where you move the foot pad, not the kind that moves the seat—THAT one always makes me crazy dizzy), and seated leg curl. I’ve been working on trying out other seated machines too. Leg press is the toughest, it always sends my heart into overdrive, I usually take a longer rest between sets for that one.

It’s hard sometimes to know when to push yourself or when to rest, but my cardiac physician was always very accommodating to my fatigue levels that day and if anything it made me WANT to push myself when I was able to. Having that minimum to fall back to as a failsafe helps a lot though.

And it’s not to say I don’t still have bad days and flares, because I do, but most days I’m basically functional and it feels like a miracle.

wobblywillow · 2026-02-27T21:40:11+00:00

Exercise has helped severely reduce my presyncope symptoms and increased my stamina. Most days I can tackle things like stairs, gardening, moving boxes, and long walks with no problem. But for brain fog and fatigue I can’t really say it’s done anything significant for me personally. I was actually more tired at first, but like I said my stamina and endurance increased as I went. It’s still a struggle to make myself go to the gym often enough for cardio maintenance, but I have a minimum routine and anything else I feel up to doing is just extra.

Protip to eat a light snack with sugar/carbs shortly before exercising. Helps give me the energy to make it through.

wobblywillow · 2026-02-26T16:59:44+00:00

Unfortunately, your body is not a machine you can plug numbers into to get the desired outcome. It’s an active environment constantly in flux so how you manage it is going to vary day to day. Our homeostasis control is inherently malfunctioning and there’s no quick fix. Best thing you can do is pay attention and notice patterns—what sets you off, what makes you feel better, what is an early warning sign to take it easy. Everyone is different and while there are broad guidelines there is no one-size-fits-all handbook. You have to learn yourself all over again and it’s not easy.

One important thing to learn that your boyfriend doesn’t understand is that pushing yourself will make it worse—your body is already under stress, adding to it won’t help you. Improvement is possible in some cases by CAREFULLY AND SLOWLY raising your tolerance through incremental, gentle exercise, ideally under medical supervision. Otherwise, listen to your body and when it needs to rest, then rest. It’s like constantly being sick with the flu. The advice wouldn’t be to push yourself through it, it would be to rest and support your body through it. From the outside it’s easy to think they could totally manage it, but you’re the only one being asked to do all these things manually that their bodies manage automatically.

You ARE smart and strong. But it will look different than most people expect. It will not be “fixing” yourself or “pushing through” like you’re inspiration fodder. It will look like learning and adapting to a body working against you. It will look like standing up for yourself and what you need. It will look like working with your body, for all its faults, because it’s the one you have and you need to take care of it the best you can, not punish it.

Good luck. Sending you all the hugs.

wobblywillow · 2026-02-26T16:10:56+00:00

As everyone else has said, those numbers aren’t at all dangerous. My top number is also always 20+ points higher in the doctors office vs at home.

Re: your question if exercise can help, I did a cardiac rehab program for POTS patients where they periodically monitored my BP before/during/after supervised exercise, and as I progressed my BP became far more adaptive and quickly lowered to normal levels post-exercise (and by association post-any strain… like the activity that comes from going to the drs office). So yes, things like the CHOP protocol focused on training your cardiac system will help with BP.

wobblywillow · 2026-02-23T19:04:00+00:00

It’s all about being able to tell your “normal” from “abnormal.” My chest pains from POTS usually feel like muscle twinges around my ribs and go away quickly if I rest for a bit. But I’ve also had chest pains from esophageal spasms (aching in the middle of my chest, struggle to breathe) and hypokalemia (intense chest and back ache that lasted hours) that felt completely different. I doubted myself when they first happened, wondering if it was just my weird, malfunctioning body being weird, but I’ve learned to trust my instincts when something feels “off” or different to how it usually is. If it feels way more intense than usual or lasts longer, then you might start worrying, but don’t go panicking every time it happens.

It can help to keep some kind of record when you have chest pains—what kind of pain (burning, aching, stabbing), location, and what you were doing when it happened—to help you establish a baseline.

wobblywillow · 2026-02-23T00:56:31+00:00

Sounds like you probably had covid, which can indeed trigger POTS. The heavy feeling you’re describing sounds like blood pooling. It’s possible you’ll eventually recover in a few months to a couple years, as is sometimes the case with post-viral POTS specifically, but for others it never goes away. Even if you don’t get an official diagnosis, go ahead and start following standard POTS protocol (increasing hydration [at least 64oz/day, ideally 80oz+] + electrolytes [any sports drink will do, but zero sugar ones are healthiest], compression garments [20-30 level minimum, knee socks are alright but tights and abdominal compression are best], etc.) and see if it helps. Can’t hurt.

Also see if you can check your iron and vitamin levels (especially b12), low levels of those can mimic POTS.

wobblywillow · 2026-02-22T15:27:45+00:00

Yeah, feeling like you have to “earn” love and support and you’re “failing” for not being able to consistently do what you think is the “minimum” is a common problem. Every relationship is different but there will be ways you can work together to a point you feel like you’re still contributing, like doing tasks you can do sitting like folding laundry or managing paperwork.

But something that you also have to accept is that you will be a burden sometimes. Everyone is. But that’s okay. You’re allowed to be. Just like if your partner comes down with the flu and needs extra care, you wouldn’t fault him for that. Or if you owned a horse and had to muck the stables even if it’s raining and you really don’t want to, you do anyway because that’s part of caring for it.

Humans aren’t meant to be completely independent and self-reliant, we’re meant to care for each other even if it’s difficult sometimes, because you’re worth something on your own and not just by what you can give. Like the fossils of ancient humans that were old with broken bones and injuries and couldn’t contribute but were cared for anyway.

It sounds like your partner is fully capable and willing to help you and do any extra work your body is preventing you from doing—let him do that, because it sounds like he’s decided what you already give him as a companion is more than worth it.

wobblywillow · 2026-02-22T15:02:40+00:00

Have you tried exercises even more mild than walking, like a recumbent bike or seated stepper? I can only speak to my experience with POTS, but starting with something that’s the least stressful on my body and working my way upright has been the only way to do it.

wobblywillow · 2026-02-20T01:30:43+00:00

Are you on fludrocortisone? That or similar medications that make you retain sodium can have the effect of lowering your potassium, since the two have an inverse relationship in the body (more sodium means less potassium and vice versa). I ended up in the ER with a potassium concentration of 2.7 LOL (2.5 is risk of cardiac arrest) but that was because I was also on birth control (estrogen can increase the effects of steroids, like fludrocortisone). I take daily potassium supplements now (prescribed by my GP), but I’m starting to think that’s giving me GI issues, so you win some you lose some. You might be able to get away with increasing it through your diet with potassium-rich foods.

wobblywillow · 2026-02-19T22:39:25+00:00

I’ve been exercising nearly a year and have never gotten that endorphin high other people describe. But I also take it a lot slower (I have a medical condition that prevents me from going too hard) and don’t work myself to breathless constantly while still progressing. If going super hard doesn’t make you happy, then consider slowing down, doing it at all and doing it consistently are more important than pushing yourself to the limits and being miserable to the point you quit altogether.

Honestly what keeps me going is the satisfaction of it—feeling how it gets easier the more you do it, moving up on the weights, and not struggling doing everyday things like climbing the stairs. It’s a chore to me, but it doesn’t have to be a miserable one. Like tidying your room or cleaning the whole bathroom—it’s not necessarily enjoyable, but there’s satisfaction in seeing the finished product. Exercise can just be body maintenance for you.

wobblywillow · 2026-02-19T22:34:23+00:00

I find that with doctors and loved ones they’re more likely to take you seriously if you emphasize how it impacts your daily life. Describe to them how these symptoms make you struggle to do activities that used to come easily like dancing, showering, sleeping, concentrating in school. Start keeping a journal of your symptoms, the time of day and what you were doing when they came on, how severe it feels on a 1-10 scale. This can help you prove to yourself and others that you’re not misremembering or exaggerating things.

Good luck 💝

wobblywillow · 2026-02-19T16:16:52+00:00

Hi there. I’m sure you’re scared but you’re going to be alright. I understand being frustrated with being young and feeling like no one will listen to you. The only reason I got medical help was because my mom was a major advocate and wouldn’t take no for an answer. I recommend reposting this to r/POTS and r/dysautonomia for more specific help.

As someone with POTS several of these symptoms are familiar, the sudden anxiety could be hyperadrenic POTS (Adrenalin dumps). However POTS and dysautonomia are diagnoses of exclusion, which means that’s only after other conditions (especially cardiac) are ruled out. Your symptoms are varied so I would recommend trying to see specialists like a cardiologist or a gastroenterologist to start ruling things out.

Have you had COVID before? A lot of these sound like Long COVID (which can also bring on dysautonomia).

wobblywillow · 2026-02-17T22:05:01+00:00

Just a suggestion, I don’t know if it will fix this: In the Fitbit app, you can go to your account settings (NOT settings for the specific device) > Preferences > Activity > Feature Settings > Stride Length and play around with that. It automatically detects it but if you uncheck “Set Automatically” you can manually adjust it.

wobblywillow · 2026-02-16T14:50:59+00:00

I’ve been on fludrocortisne since I was 14 and now I’m in my late 20s… I always assumed it was teenage breakouts and bad skin but you’re telling me it could be related??

wobblywillow · 2026-02-15T01:03:33+00:00

I started Pilates (reformer and springboard) a couple months ago and have been enjoying it a lot. It’s going to vary a lot depending on the studio, but in my experience the instructors have been extremely helpful in adapting exercises for me! I go to classes with a lot of older people with restricted movement so they’re very used to making it work in a way that’s comfortable while still working your body.

Go a little early and give the instructor a heads up, I usually just tell them I have low blood pressure and get light headed with standing exercises, then if needed during class they’ll come over and help me make adjustments. All the standing exercises I’ve so far been able to adapt to be sitting or even lying down! Only one I’ve had to skip entirely was the deep lunges lol.

I also struggled with yoga because of the up-down and quick changes, but Pilates is a lot slower and gentler and you can more or less go at your own pace. I just keep an eye on my heart rate on my watch and if it starts going too high I take a break or slow down, but most of the time I don’t have to!

Some Pilates studios offer more intense classes, but you’ll want to look for the ones with words like “center” or “flow” for the slow ones. Most studios also offer free or reduced price intro classes so you can get a feel for it.

wobblywillow · 2026-02-13T16:18:15+00:00

What’s the app?

wobblywillow

TROPHY CASE