i had enough. im wll aware i have medical trauma that may shade my opinion on the medical field or the system but im also well away i have been the one to slip through every flipping crack there is and have ' proffesionals' give me the same poor excuses and lack of information and care.

i may be tired of being chronically ill but im even more tired of medical professionals harming their patients mental health and physical.

now i posted about 2-3 weeks ago about a medication interaction that was causing my hearts electrial to fail. this should have been caught but my psychiatrist is aweful! like should have retired 10 years ago doesnt help in the slightest i just go to appease my insurance on paper but today was the last straw. since being off that combination of meds my immediate heart attack symptoms have disappeared. i had a very serious conversation with my psychiatrist about how a lung specialist after a year of me having symptoms should not have been the one to catch a psychiatric drug was interacting with another with a known fatal interaction!!! according to a lung specialist no doctors should be perscribing these two together without serious follow up . which was nt my case. i even told him i went to my family doctor and my pharmcist and told them to double checkwith me with any medication changes sent from this doctor because he cant be trusted. this comversation was three weeks ago . ad then had a converdsation on monday about medications again and memory issues.

today: pharmacist calls me : hey i just want to follow up with you before i fill this prscription as you said your having difficultly with th perscribing doctor. he has put you back on the one that causes cardiac arrest in patients with QT extended heart intervals like yourself and im wondering why as well as hes double two of your other meds that shouldnt be doubled like this....

i was in shock! even if its a horrible mistake, that could be fatal for me! that was my last straw after him looking like he was falling asleep on monday as i was trying to go over my perscriptions he goes and changes them behind my back without concent and back to a med that i was just taken off because my heart was failing.

i told the pharmacist not to change my blister packs and to lave everything as is and we hung up. i was so uncomfortable with this hes had many mistakes but this to me is negligence upon negligence upon negligence and honestly my meds are blister packed because i cant remember so if my pharmacist hadnt called me like i askd i would of started taking all th new meds with no idea.

so i called the place i see him at and asked for a meeting with the office manager and explained his doctor is harming their patients and its unacceptable and having gone through a medical breach i privacy before i now how serious this is and im not willing to let it go and not report it so you might want to get ahead of it and approach your doctor somehow. keep my name out of it and i want a new psychiatrist obviously as i dont trust him with my life one bit. we will se how this goes but i plan on reporting it officially i believe to the college of phycians i dunno im gonna have to look it up.

i now my pots throws my body into non stop symtoms but my health care provider shouldnt be adding to my pain when im trying so hard to advocate for myself there are so may horrible health care professionals.

Dr was filling out a form for social services for extra diet needs, and one of the things I asked her to put, as I've had it done every year and she did put it last year, was electrolyte supplements for my pots. When I asked her to do it this time she said no, and that i would get too much potassium from electrolyte supplement and I just need a high salt diet and water (as if I havent had pots for 10 years and tried that already before electrolytes, which made a huge difference for me), I think if there was going to be some sort of imbalance or problem we would have seen it by now. I tried explaining to her that its what has been working for me, and I would sleep 20 hours a day and have multiple fainting spells a day without them she shut me down saying she didnt want to argue. And now im left with a form that if I send in like this I won't get as much funding per month to cover my electrolytes. And im on disability through social services, its a very tight budget. She just financially cut me off from the best treatment I've found for my pots.

I've never heard of taking a daily electrolyte drink being bad for you? Have you? Have you had drs try to tell you to stop taking daily electrolyte supplements?

Has anyone else experienced this? I was strapped in, BP cuff and ECG leads on, lying flat, ready to go. No matter what they tried (for over 40 mins) they couldn't find a detectable pulse. They tried warming my hands in hot water, rubbing the fingers, asking me to clench and unclench my hands, even a hot water bottle. Every time they took heat off the hands, they instantly went cold again. They tried different fingers, at different points, even changing the finger cuff for a new one and the wires. They said they couldn't perform the test and sent me home to be booked in again, and I'll have to come back with hand warmers in the waiting room beforehand. This will likely not help, as my hands don't retain heat at all.

I've always had really severe circulation issues (no diagnosis). Obviously this is not ideal, but it is what it is. Not been diagnosed with anything like Raynaud's.

Has anyone else experienced similar?

"Porziņģis has been away from the team while dealing with recurring POTS (Postural Orthostatic Tachycardia Syndrome) symptoms."

https://sports.yahoo.com/nba/article/kristaps-porzingis-reportedly-dealing-with-recurring-pots-symptoms-as-warriors-explore-trade-options-182650464.html

Ok. Just got out of an appointment. I’m baffled.
It’s not pots, we did the like stand up from sitting test, I’m ok with it not being pots.
What I’m not ok with is the doctor going (turns to my mom who I had for support)
“It’s just anxiety.” 😐
He tells me “hydrate, workout more, wear compression socks above the knee compression socks, 30 Mercury, it’ll get better in the cooler months.”

(My super bad symptoms, first big flare up, happened in January-February)

Also told me “it’s not that bad. I’ve seen bad cases where people’s heart get above 120 and stays there. Your symptoms aren’t that bad.”

I’m feeling so fucking defeated. It’s not anxiety. I’ve been diagnosed since I was 15 years old. I’m 24. I know it’s not. I can’t fucking workout most days. I try. I can’t. I’m so angry. Genuinely.

Edit: I scheduled the tilt table test before this appointment and they told me I need to meet with this doctor prior to the test so I did. It’s still scheduled but idk if they’re going to cancel it.

I've been dealing some type of chronic illness that has slowly ruined my life since I was a month from graduating high school and I've been getting worse without much helping besides more medications. It's one of the hard days of feeling like I'm not trying or feel useless while I'm in my sophomore year of college. Does anyone have any stories or experiences they can share? I like hearing about other peoples lives and feel seen while surrounded by others might not understand.

28F just diagnosed about two months ago. I had a handful of random moments here and there the past year but was overall healthy and my doctor wasn’t worried at the time. We thought maybe lack of sleep or being hungry etc.. The POTS kicked in full force for me in June though and I was diagnosed in August. Since June I’ve experienced some really scary episodes, especially with driving, which has left me with extremely intense anxiety. All of this makes me anxious to be honest but traveling has been a significant stressor and trigger for me.

My first thing is I have stopped driving myself anywhere that is more than 10 minutes away. This works fine when my job is only 5 minutes from home, but it makes it hard to do anything and go anywhere else. I get super panicky when I drive. I think it’s because I have to have my legs down the entire time which is hard for me..

That said, I have a wedding out of state in December and really the only reasonable way there is to fly (driving would be well over 24 hours). My fiancée wants to fly and the rest of the family does as well. I’m absolutely terrified of flying because I’ve read it makes symptoms worse and also you have to have your legs down the whole time which is triggering for me. I don’t know what I’m supposed to do.

I know I’m inconveniencing everyone all the time. My fiancée and I can’t even go out to a restaurant anymore. This has impacted my life so much and I know it sucks for other people to be driving me around etc. He doesn’t complain or make a big deal of it but I know objectively it sucks.

I’m also having constant anxiety which creates a loop. It’s like I get anxious I might have an episode which then triggers an episode and makes it even worse which makes me more anxious and it’s never-ending. I’m currently taking Buspirone for an anxiety medication but my anxiety is through the roof anymore.. I just feel impending doom.

I’m so lost and I feel so hopeless. I’ve always been hyper independent, like literally moved out of state alone independent. I hate that I’ve lost that and have to rely on everyone. I hate that I can’t just live my life without fear. I just want to get back to myself but it’s like a never ending uphill battle.

I just need advice, anything. I’m taking so many vitamins and supplements and doing the Liquid IV and hydrating and using salt tablets etc. It’s just not working.

I'm 21F and currently attending Penn State, and I'm really struggling with figuring out how to have a normal college social life while dealing with POTS.

I recently started taking metoprolol succinate ER 25 mg (at night) and midodrine HCl 2.5 mg (during the day), and they've made a significant difference. My heart rate is much more controlled, my anxiety and racing heart have improved, and I'm finally able to do more things again. However, I still experience dizziness when standing up and feel shaky and weak almost every day.

If you're familiar with Penn State, you know that walking is basically unavoidable. Getting downtown, walking between bars, standing in lines, and then walking home can involve a LOT of time on your feet. Since prolonged walking and standing are some of my biggest triggers, the thought of going out makes me nervous, ultimately making my symptoms worse.

I know there are quieter bars where you can sit down, and that's definitely an option, but I genuinely love dancing and being out with my friends. I'm only 21, and I don't want to feel like I have to miss out on these experiences because of my health. I'm also trying to navigate the whole drinking situation.

I'm curious about:

• Does anyone take metoprolol and/or midodrine and occasionally drink? How does alcohol affect your blood pressure, heart rate, or symptoms? Have your doctors given you any specific guidance?
• Nonalcoholic alternatives: What do you typically order at bars? Has anyone tried nonalcoholic drinks or calming alternatives that don't worsen their symptoms?
• Standing and dancing: How do you manage going to crowded bars, dancing, or standing for long periods without getting dizzy or feeling faint?
• Walking distances: How do you handle getting to and from bars, especially in college towns where everything involves walking?
• Blood pressure: For those who struggle with low blood pressure or orthostatic symptoms, have you noticed alcohol making things significantly worse, even with just one drink?
• General advice: Do you have any routines, precautions, or tips that make going out more manageable?

I completely understand that alcohol can worsen dysautonomia and that medication changes should be discussed with a doctor. I'm not looking to stop taking my medications just to drink, and I plan to ask my cardiologist about what's safe for me.

I'm mainly interested in hearing people's personal experiences and how they've found ways to enjoy their social lives while managing this condition. I feel like I've already missed out on so much because of my symptoms, and now that I'm finally starting to improve, I really want to find a balance between taking care of my health and enjoying being a college student.

Hi I’m very new to pots. I had my first episode last year. Have been light headed since. And finally got diagnosed after tilt table in sept.

I’ve been getting worse and worse though, and now I’m having major pooping problems.

ITS GOING TO GET TMI HERE.

when I go to poop, it almost feels like I can’t get the poop out. Like it’s stuck … I then have to get up and walk around and drink water and try again. The issue is I really have the sense of urgency but it almost is like, too big feeling to come out? Or it just won’t get pushed out idk? When it finally does come out it doesn’t seem like a hard constipated poop to me either so I’m kinda confused if this could be a pots thing?

Pooping has become a kind of trigger for my pots in the last few months, but this particular pooping problem has been happening only maybe the last month.

I had a GI appt but it got canceled and rescheduled. Just wanted to check in here and see if anyone has experienced this.

He keeps saying that we are “treating” and “curing” POTS by doing/trying all of the regular stuff always mentioned in this thread. Regardless of what we are/have been doing, it bothers me that he uses these terms. I usually use the term “management” because it implies that POTS isn’t curable. I’m feeling emotional and confused. Does anyone else struggle with this? Is POTS actually treatable? I’m so tired of hearing conflicting information.

For anyone who gets low blood pressure episodes, it feels exactly like that. Like if my BP was tanking, I’m losing strength in all on my body, short of breath, and like I’m about 10 seconds from passing out. Yet, my BP is perfectly fine, and my HR is fairly low( anywhere from 60-90 most of the time) .

So does anyone else experience this?

Idk why but leg exercises make my heart pound even if I'm laying down. I can do core, arm and even glute exercises, but any calf or leg exercises seem to trigger my pots.

i haven’t went walking since before i developed pots five years ago. monday i went walking for an hour and when i layed down i felt flick like spasms in my legs and butt. it went away after about 10 minutes. i just went walking today for about an hour and noticed my thighs itching. i was trying to itch and walk lol. i did the same thing though when i layed down. the flicks. does this happen to anyone else? i have no idea what’s causing it. i came across a few people doing the same thing, but no one really had an answer for it. in the comment thread a lot of people with dysautonomia issues were having the same experience though! just curious.

Ugh I thought I was over it… I got POTS from Covid in 2024, had a terrible year of it and then it went away… completely gone for a whole year. So I went back to exercising and normal life..

this week out of the blue it’s all coming back, the blood pressure drops, tachycardia… I just need to vent that this really sucks and I don’t know what triggered it… a bit of alcohol maybe? This disease is hard with young children.

Hello everyone.

My girlfriend was diagnosed with POTS over a year and a half ago. We started dating about 2 months ago. Ever since she told me about her POTS, I have been trying to research and understand.

One thing that I cannot seem to understand is the leg pain. She struggles to sleep and be comfortable. She feels the deep aching pain in her legs which prevents her from sleeping/sleeping well. She has tried compression, elevating her legs while sleeping, medicine, and more. Nothing seems to really be working.

Do any of yall have advice or insight into things she could try to help? Just trying to learn what I can to support.

Hi- does anyone else experience the feeling that your head is filling with fluid while you’re lying down, sometimes to the point where it’s throbbing? Then when you stand up you can also feel it for a while until it dissipates? Also feel cognitively and physically slow when I get up from lying down for a while. Like I walk slower for a bit.

Hello everyone!
I was wondering what i am supposed to do afterwards, its almost been a week after the test with dizziness, muscle weakness and fatigue and i am trying to focus on laying down and drinking saltwater, and compression. Also eyes going dark when i stand up, the usual things. Didn’t even know i could still get this kind of worsening after new year because i have always supported my body all the time with water and compression and moving only when it feels good and it has been working really well.
Got betablocker prescribed a month ago which has helped me get to the gym again finally to work out for my pains and ive already added 5kgs, things are going great and i take obe 2km walk a week. I have no idea about the results yet which is scary and i completely zoned out during the testing and i didnt understand what was going on and i couldnt say what symptoms i had because of how overwhelming the situation was and i have autism.
And i am so used to my body feeling awful and i have a lot of pain so i dont know what to point out because everything feels normal now. Sorry about a long text! I am also scared of how long it might be bad or if i will get better again, there is always a lot of uncertainty with this condition to say the least!!

Hi everyone. After coming from metoprolol twice daily to Propanlol once daily, I saw a big improvement. Except for the last few days. Sometimes, especially when walking, I get a chest pressure. No pain or radiating pain, just a pressure. It makes me really anxious when it happens. I didn't have that before. I checked my blood pressure during this, granted my anxiety was higher, and BP was 118/93. I checked a few times and it hovered around there until eventually dropping to roughly 123/84. I cant remember exactly because I was pretty anxious.

Has anyone else dealt with something like this? I was doing really well on the propanolol for a couple weeks. Im going to work with my cardiologist obviously but this makes me so nervous sometimes.

I’d love to openly discuss any types of exercise and tools that work for you all (please don’t link products or name brands). HyperPOTS here and I don’t faint but I do get light headed. I’m medicated fairly well yet haven’t been able to afford going back to physical therapy regularly… so honestly at this point I’m looking for safe at home exercise tools that have worked for some of you.

My thoughts so far are:
- Recumbent bike
- Rowing machine? (too bulky)
- Elliptical (standing may be an issue)
- Light weights (tough on my joints but my old PT trained me how to do this safely without risking dislocation)
- Yoga
- Walking but it’s not great where I’m living

Things I definitely cannot do:
- Heavy weights
- Treadmill
- Running

At this point my goal is to avoid deconditioning more but also upkeep my cardiovascular health due to risk factors in my family (early sudden death etc). Have any small niche things worked for you? Any exercises that feel semi comfortable? I don’t deal with CFS thankfully so I’m safe there. I eat fairly healthily due to a cow milk protein allergy and not being able to have gluten due to celiac disease. Any input is greatly appreciated! I want to basically supplement medicating by also practicing healthy but safe exercise.

Met with my doctor today to discuss my severe sensitivity to artificial light (I get so dizzy and disoriented I have to hold onto either my husband or service dog anywhere that has fluorescent lights) and he said POTS doesn’t generally cause light sensitivity, but I should be screened for Irlen’s syndrome.
I’d never heard of it before, but online I’m seeing that it’s not real? But a lot of people are having good luck with tinted glasses despite the lack of evidence? My doctor said it’s just a newly discovered condition, so it will take the manuals a while to catch up. I live near an Irlen’s clinic, so I’m going to get screened, but this all feels very hokey… Anyone have any experience with this syndrome?

I have really hesitated to post because I do not want my story to make anyone feel dismissed. I do think I should share, though, because it might help someone.

I know what it feels like to hear that all of my problems are because I am overweight and do not drink enough water. The issue was that I did drink water. In February 2026, I was hospitalized for syncope. I could not stand upright at all and was laid up in bed for much longer than the six days I spent in the hospital. Everything made me pass out: sneezing, coughing, excitement, and literally anything else.

I received a blood patch because doctors thought I had intracranial hypotension. My brain is "sagging" due to a Chiari malformation, and they suspected I might be leaking spinal fluid, which would explain why my brain lacked buoyancy. At the time, I was also taking a GLP-1 medication. We could not figure out exactly what was going on, but my body was going haywire. I could not regulate my temperature. I felt burning hot all the time and had to keep my apartment extremely cold. My heart rate would spike when I stood up and drop when I sat or lay down. I would pass out, and no one could get a pulse or blood pressure reading from me while I was unconscious. I experienced a wide range of other symptoms pointing toward POTS or dysautonomia. Unfortunately, I never followed up after my hospital stay because I lost my insurance.

Here is some background on my water-drinking habits: I did not get thirsty very often, especially while taking a GLP-1 medication. I also have AuDHD and struggle with remembering to drink water. For years, I would quickly drink a 16-ounce glass of water or electrolyte drinks three to five times a day and call it good. I thought I just needed to hit a certain number of ounces per day and I would be fine.

Recently, I started sipping water from a 40-ounce tumbler with a tiny bit of Celtic salt. I sip throughout the day whenever I am thirsty (I actually get thirsty now), and all of my symptoms went away. I mean all of them.
Three days after I started sipping instead of chugging, I saw a curandera who read my irises. I was skeptical, but because I had no answers about my symptoms, I decided I had nothing to lose. She immediately asked if I tend to slam big glasses of water down. I said yes. She explained that this was causing water toxicity. I would be severely dehydrated, and then I would suddenly flood my system. My cells would swell but not actually absorb the water because it lacked electrolytes. My shriveled cells were simply being inundated with plain water. I probably did not even feel thirsty because my cells felt attacked by too much water flooding my system all at once.

Now I sip water throughout the day and use a little bit of salt to help the water absorb into my cells and stay there. My symptoms are gone, and I am finally living a normal life. My back and leg pain has decreased exponentially too. I am not saying this is the cure for everyone, or even a permanent one for me. I just know that I feel incredibly good now, and it is not because I was failing to drink enough water. It is because I was not doing it the right way.

TLDR:
Changing my hydration habits from chugging plain water to sipping water with electrolytes eliminated my symptoms.

Does anyone have this? Im wondering if it could be dysautnonmia. Very often when I go to drink from a bottle especially I'll get a sudden head rush/slight disorientation. Its always very alarming. Any ideas?

It’s specifically on the left side propped up by your elbow and it helps with the fast heart rate and air hunger I get when I eat sitting up right. Does anyone else do this?? 😅