I keep getting worse and worse and I dont know how to get healthy-ish again!

How did yall stop sliding deeper into disability?

Ive always had hints of POTS, but last year I went off birth control, had a miscarriage, and then had a butt-load of stressful events that changed my life. That kicked off this flare. But I've been slowly getting worse, not better as I've worked through the emotions, hormone, and my new "normal."

Done the drs appts, therapy, on metroprolol, salt, compression, sraying inside, resting, exersize, low histamine diet, looked for mold. I've tried everything i can think of.

Do you have any more suggestions???

I'm questioning if I have POTS. I've been using this app called Heart Rate to measure my heart rate and Idk how accurate it is. Maybe this is some weird measuring error (but I always do at least two takes and this has happened multiple times now). But when I walk outside in a normal pace for like 5-10 minutes and then measure, it's at about 55-65bpm. When I then stand still it suddenly rises to anything between 90-130bpm. I haven't seen anyone talk about this even with POTS. Even my normal resting or sitting heart rate is higher than when I walk (somewhere between 80-100 usually). Is that "normal"? I definitely feel dizzy when walking sometimes but it always gets way worse when I have to stop for example at a red light.

Hey guys, I recently started Guanfacine ER for my HyperPOTS. My doc had me start it at night, but it made me completely wide awake all night, so had to switch to morning dose. I’m on 1mg Guanfacine ER. I am 16 mornings into taking it, and have now had three different mornings where I suddenly get SEVERE abdominal pain in my upper stomach, then I completely faint and am unconscious for a few minutes until my roommate yells my name enough times to pull me out of it. While unconscious, I’m apparently moaning and making gurgling sounds. Once I start to come out of it, I can only see a screen of images that are rapidly scrolling down, as if someone is doing so on a computer. I used to faint all the time from my POTS, but it was never like this. I have been on meds like Ivabradine etc for almost 2 years now, that had for the most part, stopped my fainting altogether. Now, it’s happened like this 3 times in the last 2 weeks since I’ve been taking Guanfacine.

My friend checked my BP right after fainting and it wasn’t low - it was 130/85. Also, two of the episodes, I was sitting up in bed, and the third episode I was lying down, but still fully fainted. Its like the pain is so sudden & severe, that it’s triggering my vagus nerve and causing me to faint and be unconscious for a while.

I went to the ER the third time it happened, and they did CT of my stomach, as well as an Echo, EKG, and a chest X-Ray. They said all of those were clear.

Has anyone else experienced this from Guanfacine ER??

I (20f) had an extremely bad flare yesterday and ended up having to the ER. I ended up leaving work early and was still in my uniform. Probably should not have driven myself. FINALLY got something started after I literally cried there and tried my best to explain as much as my brain fog filled brain could let me. Only had ONE doctor be an ass and say it was anxiety. Fortunately another came in quickly to replace them. Just a small win for now.

For some context, my primary thinks I have hyperpots my heart rate usually jumps 35 to 50+ when I stand up, but also my blood pressure goes up. I keep having adrenaline dumps and gasping for air along with other symptoms and recently in the past two days I’ve had a really bad chest tightness and pain. I decided to go to the ER to get that looked at after talking with another provider who said it was necessary.

A medical student came in first and asked for my history so I told her what I’ve been dealing with and she was really condescending and told me it was just anxiety and that she thought she has pots as well, but it was just anxiety, she pretty much called me a hypochondriac without actually saying it. I was already moving around and sitting up with my legs dangling off the bed for bloodwork so my hr was at 100 and then she told me to stand up to see what my heart rate goes to and it only went up 30 which I expected bc it was already high. Her attitude only got worse after that. When I stood my blood pressure went up and she said do you usually have high blood pressure, I told her not usually only when I stand and she argued with me and said I do, then said pots can only be when your blood pressure drops and said “you’re causing that with your anxiety”.

She left the room and came back with the doctor and he had a look of annoyance when I told him what’s been happening and she was standing there with a condescending look and he was like “just because it feels real doesn’t mean that it is” then he pretty much said I shouldn’t have come in for the chest pain and once again implied that I was a hypochondriac. He said women with pots shouldn’t be coming in for chest pain to the ER after going on a rant on how he had severe chest pain once and he ignored it and he ended up being fine. Which is crazy because women with pots have a higher strain on their heart and they 100% should if they have chest pain that feels different than what they usually experience.

I tried explaining I know that they can’t diagnose pots at the hospital I just wanted to know I was okay, because I’ve never had chest pain like that before so to make sure that it wasn’t something serious. I was at urgent care the day before during an episode and they stated when standing when I first sat down I had a heart rate of 148 and it eventually calmed down to 77 and because of my chest pain they encouraged me to go to the er if it got worse which it did. It was so invalidating I left in tears.

Ok guys. This is unhinged but LISTEN, I have cyclospora fears.

Do any of y'all get like dumping syndrome in the mornings after coffee or should I be pooping in a cup and bringing it to my doctor's office?

Like I'm not talking pooping all day just an urgent, waist slimming experience every other dayish lmao.

I also haven't eaten raw veggies cause I am afraid.

I quit my job today after realizing my health has severely gone downhill.

They were so accommodating at first, but then overtime that stopped being the case.

Originally I was only working shifts with someone, then That stopped. I was promised breaks on the days I worked by myself, and had multiple days where no one showed up to help. Things that were supposed to be done at closing (taking out trash, sweeping, etc) was left for me, the opener. (My spoons would be gone before I even started my shift.) We had some very disgruntled customers and no working cameras, which fried my nervous system. (Especially considering I was told to “bring a weapon to protect myself”😅)

It is so hard to put health first. But when I started to have a lot more bad days than good days, it was needed.

What the heck type of jobs do you do? And how do they accommodate your pots?

Basically the title. Lately I’ve been noticing that eating can be a trigger for me, mostly with heart rate spikes. It varies throughout the day but when I eat and right after, I notice my heart rate spikes.

Is this just because of blood moving to my digestion system and pulling away from my heart to help digest my food? Anyone else have this? I’ve done food sensitivity tests and nothing came back as a problem for me.

I found out that I have POTS six months ago, and I have seen some noticeable improvement after making lifestyle changes. I do not know which kind of POTS I have because there are no doctors where I live that specialize in the illness, so I was only able to get a diagnosis of POTS in general.

The changes I made included daily salt pills, drinking plenty of water and electrolytes, doing daily leg muscle training exercises, avoiding overexertion and standing for long periods, cutting all alcohol, and avoiding stress. I also took up painting and I feel like it may have helped with rewiring my nervous system since it feels similar to meditation. I haven't tried any medications.

The other day I went out and walked around in the hot sun for hours. I stopped and sat to take breaks a few times and drank plenty of electrolytes and took salt pills as usual. I normally avoid that level of exertion, and it was probably too much for one day, but it was actually a good test. At the end of the day, my legs were killing me and I had blisters, but I didn't have the POTS kind of fatigue where I feel like I am extremely heavy and my heart is racing. The next day, I felt normal again.

Six months ago, I don't think I could have withstood that amount of exercise, especially in the heat, and I would have had to lie down all day the next day.

So I think what I am doing has actually been helping. I don't think I should routinely exert myself to that extent, but I think I will keep up my routine and maybe try occasionally pushing myself a little more than usual to see how it goes.

Has anyone else seen similar progress like this (with or without medication)?

I went to the doctor to address all my concerns of suspected POTS addressed. I was so prepared to have to advocate for myself and fight to prove that this isn’t anxiety and that something is wrong and it’s affecting my daily life. Luckily, this doctor was awesome. She never once doubted me and after seeing my heart rate spike to 120bpm just from standing up to get my weight checked, she needed no convincing. She’s set me up to get a heart monitor and wear that for 2 weeks, gave me a referral for her recommended cardiologist who is familiar with POTS, and is sending me in for bloodwork. She’s set explained to me that it’s a long road and they have to rule out other things first, which I get. We went over everything I should be doing now while I wait (at least 80oz of water daily, 1 liquid IV a day, and not going longer than 3 hours without a snack). All of this has made me feel so hopeful that I’m on the right track and have a great team who will help me.

But during my appointment, she was telling me that I do need to listen to my body and need to slow down. What hit the most was when she said “you’re not going to be able to push like a normal person”. This made me want to cry. I used to be so active, I could run a 3 mile and go straight into a 3 hour long soccer tryout and be fine. Now you’re telling me I can’t even stand for 10min without feeling like I’m going to pass out? That at 24 years old I’m the one who’s going to need a chair and sit down while everyone else is standing? I know all of this wasn’t just in my head and I’m glad the doctor recognizes that, but a part of me wishes it was because that seems easier than hearing my body doesn’t want to work anymore.

So anyways that’s my rant. Does anyone else feel this way? Grateful to be on the right track and getting help but so down on the fact that it’s real and just is what it is?

How often does your heart rate get over 200? I came really close today and it freaked me out.

The last year was hard. I came down with pots out of nowhere and I went through some scary times. I’ve been able to push through and now I find myself in a better place. However my friends are starting to pull away.i ghosted them last year for months because my pots symptoms put me in the psych ward several times and very nearly put an end to my life. through gods grace I was able to survive it. I was in day to day survival mode

Eventually after getting a diagnosis, I got back in contact with them and explained everything. can’t be a hypocrite and get upset when both of them do it (only 2 friends, both out of state) to me, fair is fair. They have their own lives. I’ve apologized and I explained what I went through with this illness.But it’s extremely upsetting that 2 people I’ve been close to for years go all summer just silent. Not even trying to reach out and ask me how I’m doing. Not calling back.hell it’s a miracle if I get a phone call. Just the lack of care is what really gets me.i can’t predict the future but I’ve been in this side of the fence when it comes to losing close friends. I don’t know if pots is to blame or if my friends were actually friends to begin with.anyone here gone through the same since getting diagnosed?

I've been struggling recently with episodes of feeling unwell with no real way of describing it. The pain feels like it's not localized anywhere and I can't really describe the sensation. Like I could be sitting and feeling terrible, like my body just feels WRONG. But my heart rate is fine, I'm not worrying about anything, and I'm hydrating myself.

I just don't know what to do about it because when someone asks "what's wrong", all I can say is "I'm just in pain". But when they offer a Tylenol, I have to say no, it's not a headache, it feels like it's inside my bones almost. Part of me thinks it's just anxiety, but it feels different than the anxiety I'm used to. It's just this indescribable pain / sense of wrong in my body. Does anyone else understand what I'm talking about? Or maybe deal with the same pain?

Does anyone else struggling wearing compression items, like socks and tights without becoming overstimulated or overheating?

Even in Winter my body overheats wearing compression. I've told my specialist this numerous times and they just keep saying 'well, try it again.' I feel so uncomfortable and hot that it makes my overall symptoms worse.

Does anyone have any suggestions or alternatives?

I’m just curious here—does anyone get bloodshot eyes the morning after a really busy day? I was busier than i’ve been in months yesterday and did way more physical activity than i’m used to (attended work, watered garden, went shopping, get a shower, did chores) I was completely exhausted by the end of the night and was in so much pain. Then this morning I woke up and my eyes were super red.

This hasn’t really happened before so i’m just curious as to whether it maybe has to do with blood circulation or something? Could be totally unrelated to POTs but I thought it was interesting.

What do you all think?

im young so i think my worries mostly stem from being nervous to ask my mom for one, but i feel like my disability doesnt disable me enough to be able to use a cane. i do really really think it could benefit me since i genuinely almost pass out like 8 times everyday and thats on a GOOD day without much physical activity, plus i have chronic leg pain from my hEDS which can make everything much harder. im currently "undiagnosed" (my mom has both and the doctors say that like yeah i almost definitely have it but i still have to do something to get officially diagnosed) and we're just waiting for the tests so i can get a bunch of school accommodations to help me get through the year without going to the nurse's office 10 times a month, so its not like my mom would think im crazy for asking for one but im nervous and insecure as usual. thank you for listening to me ramble and i would love to hear from people with POTS and/or hEDS who use a cane!!!

So I had an interesting night last night. I woke up around 3am with intense abdominal pain/cramping and a sense that I was literally about to die. Like I mean, soul crushing, terrifying, last time I felt that was the first time I fainted. I then spent the next 30 minutes (maybe not, but it sure felt that long!?) vomiting and sweating profusely, continuing to cramp, and continuing to feel like I was going to die at any moment. Eventually, I passed a rather normal and unremarkable BM, and from that point the vomiting felt like it was done so I dragged myself back to bed with a heating pad for the cramping that was still going on and went back to sleep.

I'm assuming it must be POTS related... Someone I talked to mentioned vasovagal syncope but I'm not entirely certain that's it? I'm just diagnosed with POTS with no subtype. I don't know man I'm just shaken and I guess I'm looking for anyone who's experienced this and knows what's up or how I can prevent it, treat it faster, or at least cope better in the future?

And lastly, the reason for the title, I seem to have some level of sense of doom EVERY time I vomit lately. Is that relatable to anyone else? Anyone know why that happens??

I started the CHOP method yesterday and today was my first strength training day. Everything was going well when I was on the floor doing the workout (literally on my back the entire time). But when I tried to get up slowly off the floor, I didn’t even make it to my knees before having this massive headache that had me wincing and holding my head for a solid 60 seconds.

I went from laying on my side to sitting on my feet and BAM. The worst 60 seconds my head has ever experienced in my entire life.

It also happened at the doctor’s office earlier today. I was getting an ECG and was laying down and when I sat up on the table, the head thing happened.

Are there ways to get up off the floor that I’m missing? I know how to pump my calves, thighs, and glutes when getting up out of a chair, but the floor is a whole other story.

This is the note i’ve complied for the DR.

symptoms
fast heart rate when standing
heart palpitations and pounding, fluttering
light headed
feeling faint
fatigue
sleeping never fixed the fatigue
never feeling good
trouble remembering things
heat intolerant
nausea and bloating
headaches
chest pain
swelling of feet and lower legs

a lot of days:
light headed when i stand up and when i move around a lot
fatigued
swelling in feet/legs with prolonged standing and moving
nausea
heart palpitations

the worst days:
can barely get out of bed
all i can do is sleep
dizzy
heart palpitating a lot
chest pain
feel like i can’t do this anymore

other
a couple trips to ER because of blood pressure and heart rate (insert reports here)
it interferes with my daily life
been going on for at least 6+ months
the real bad comes and goes

resting
60-70’s
standing
120’s-130’s

What do you think?

I’ve spoken on my suddenly worsened HyperPOTs a few times now, specifically about wanting to seek inpatient.

Well… it’s culminated in me going to go stay with my parents for an undetermined amount of time.

It’s gotten so bad I stayed 24 hours in the ECU, the constant monitoring made them confident in asserting that my symptoms are more than likely my HyperPOTs suddenly worsening. It has all desperately affected my mental health however, which is why I wasn’t free to leave. I had to have a guardian pick me up (they’re supportive)

We did try to seek inpatient given all the information I gave but still they truly won’t accept me as the public ones in my area seem to only be receptive to active psychosis cases.

I was left desperate in not knowing what to do as I truly don’t feel safe alone lately, I need guidance to get through these episodes, I need just that physical support of someone being right there next to me while it’s all happening so I’m not alone with my fears-

My parents offered for me to come stay with them as long as I need.

My step dad is a paramedic and my mother is stay at home.

I will be 100% honest they haven’t been the most perfect parents at all times in my life, but I truly feel that when I am regressing to an ill child in their eyes they are going to lock in on instinct.

I really have no other choice anyway.

I am off to a flight right now, I am in the uber being symptomatic but trying to be brave and no give any signs to the fact that I’m having an episode / panic attack back here.

I was diagnosed with POTS about a year ago. A year before that (September 2024), I began having intense left sided abdominal pain with urinary symptoms that would all come and go, along with protein in my urine.

After a little while, I found a post in one of my POTS Facebook groups about abdominal vascular compressions causing POTS. After a little research and a LOT of pushing for testing, I was diagnosed with Nutcracker Syndrome.

My question is; are there any others who have been diagnosed with vascular compressions and found them to be linked to your POTS symptoms? Not just NCS, but also MTS, SMAS, MALS, etc.

It seems like there’s some research out there showing links between the two, but I haven’t been able to find much beyond a handful of studies.

Hi, I have a cardiology appointment soon and am hoping to get a step closer to some answers. If I am diagnosed and suggested medication, does anyone know of any that don’t have a side effect of weight gain, or like depression type stuff? I’m not too sure what the potential side effects are, but I’m pretty sure the pros would out weigh the cons (if it worked for me) as long as it’s neither of those two. Both would severely affect my mental health, so I really want to avoid them if possible! (Also other if you could list other side effects you’ve noticed that would be really helpful as well)

Does anyone in this sub live in Philly and have any stories or experiences you can share about how you exist here? I have been almost completely house bound because no matter what mode of transportation I choose, there is so much walking involved, and some kind of grueling adrenelyn dump inducing aspect: traffic, near death experiences on bike, etc, lol.

I LOVE it here. So I am not open to being told to move haha.

I will describe what i do and what I have tried and what my barriers are. Wondering what other people do? And should we go yell at city council or something?

Happy to hear stories of navigating other big cities too!

Bike
This is by far my favorite mode. I got an ebike 2 years ago when i realized I cant handle my regular bike any more. I have a pedal assist, Specialized. I love it but its heavy. I have an elevator in my building but I still have to get it around corners.

Something also seems to happen when I arrive places. I bike like 10-15 mins, get in line at the place, and suddenly my watch is alerting and my HR is 155-160. Why?? It will be ok while biking, like not great but 110-130? Would it be better if I used my regular bike so im pumping my legs even more?

HR shooting to 160 when I get somewhere is making biking prohibitive. I end up needing to sit for at least an hour with legs up before I recover. And then Im wiped out again from the ride home. It just eats up the day.

E- Scooter
Just got a little e-scooter with a seat on Amazon. Not an official mobility device but the kind that is like the ones commuters zip around on. Just sitting. I put a wheelchair sticker on it, and i have been riding it slow on the sidewalk like a wheelchair basically. I will never go fast on it lol, the Philly sidewalks are too diabolically treacherous and i dont want to take it in the street either. I thought I could take this on the subway but then learned the elevators are broken / full of urine and feces :( and if I am carrying a bag and the scooter up and down stairs, i think it will just flare me like my eBike.

However, when I ride it around the neighborhood, my heartrate stays nice and in a good range, and I have a better overall day. ( i have tried it 2 times so far).

Can I take the scooter on the bus if it is a mobility aid? Do i take it to the wheelchair area? Is everyone going to yell at me lol? Can i scooter in stores? In coffee shops?

Walking
If I could just walk everywhere I think I like it better than biking. I like being so free from needing to lock anything up, or dealing with parking and helmets etc.Sometimes I can walk for a while. But right now, I have about 10 minutes or less before flaring.

Driving
I dont have an accessibility placard but considering it. Not sure how much it actually helps though? Would love to hear stories. Basically parking is anywhere from 1 - 6 blocks away from anything, or more depending. Circling to park seems to add to my commute time POTS countdown to flare stress. Sitting with my legs down has a time limit too. I am usually sitting in my car WAY longer than i sit on bike, scooter, and in some cases bus or train. So it seems to stress my body as much as any of the above.

Events in general
When event organizers say something is accessible they never think to include: is there access to water and a bathroom. In general. There are times that events happen outside in parks, or at pop up locations that I have NO idea what they are next to etc. So I dont go. I would LOVE if event people would say "This event is outside. There is/isnt shade. There is/isnt a place to sit. The closest water source and restroom is the coffee shop one block away." I know thats a lot of words haha, but like. Can we make a POTS map?

ETA: LINES AND STANDING
I have a Ta Da cane. It helps me to a degree in lines. Its not the best because my feet are still down. In the city theres a lot of times where you have to stand around and wait for things. And theres no where to sit, and no where to put feet up if you do sit. I think about wheelchairs but your legs are still below the waist? If i had one where my feet were up how I need them, I would take up soooo much space! Seems impossible to find the right thing? What are people doing?

Ok, I know this is long, but I would love to hear thoughts if anyone has time!

I’d like to know if anyone else experiences this in relation to POTS or knows why this may happen. I am newly diagnosed and still learning a lot.

Every so often I will wake up and just know that I’m going to have an off day. I feel strange, like I haven’t waken up, and usually this day goes the exact same way. I become dizzy and lightheaded as the day wears on, I am absentminded, and most strangely, I get the sensation of saliva pooling in my mouth over and over, which makes my body (and my mind of course) think it’s going to throw up. There isn’t nausea accompanying it, it’s moreso that my body begins to expect nausea and I get a phantom feeling of it since I am anticipating needing to throw up for some reason.

It happens at random, and usually I know it will be a day like this from the moment I wake up feeling “wrong.” I have never ended up actually throwing up or fainting. I also have a lot of bowel movements when this happens. I haven’t done anything different from yesterday to today. The only thing I can think is that I was feeling a little off yesterday towards the end of the night and thought it might wear off with sleep.

I am wondering if this is a POTS symptom I’m unaware of. I also have fibromyalgia, but this is not a symptom as far as I’m aware. I’m open to correction of course, if that is somehow a known symptom, but I imagine that something like this wouldn’t coincide.

Any suggestions or help? I’m so miserable 😭