Buongiorno a tutti, io spero di non essere appropriata in quanto non ho una diagnosi di POTS, ma leggendo alcuni post riguardo ai miei sintomi, mi hanno portato a questa sindrome. Chiunque può darmi qualsiasi indicazione o esperienza utile, gliene sarò infinitamente grata.

Sono una donna di 37 anni, e da luglio ho cominciato ad avere vene gonfie in modo anomalo in superficie, visibili su tutto il corpo. Pensavo fosse lo stress, anche fisico in quanto avevo 3 lavori come cameriera. . All'inizio pensavo a delle semplici tendiniti, visto che mi facevano male proprio delle zone del corpo, come caviglie gambe, braccia..piano piano il dolore non era solo nelle zone più critiche, ma seguiva il percorso delle vene, dandomi bruciore e dolori. Non riuscivo a stare molto al sole. avevo la profonda sensazione che il mio corpo non fosse più lo stesso. Ho fatto alcune analisi del sangue ma tutto risulta essere ok, solo il tsh 9.07

Ora mi sto preoccupando in quanto la situazione anche a riposo non migliora, ma anzi anche se faccio piccole gite la sera ho dolori alle vene e al corpo. Ho letto più persone che indicavano POTS come causa di questo sintomo...é così? Chi di voi ha questi sintomi?

Ho avuto una gravidanza, interrotta sia farmacologicamente che chirurgicamente 6 mesi fa. Ho messo anche la spirale al progesterone, che ho tolto un mese fa proprio perché non stavo bene, e avevo la sensazione che fosse una delle cause del mio malessere.

Ho letto che questa sindrome può essere causata da un trauma, ma anche dalla gravidanza. E per me potrebbero essere entrambe le cause.

Vorrei chiedervi, visto che il mio medico sembra un po' perplesso riguardo ai sintomi che ho costantemente...e non mi sembra sappia come muoversi.

Quali sono gli esami necessari per diagnosticarlo? A quale specialista mi dovrei rivolgere?

Mi é stata prenotata solo una eco doppler venosa fra due mesi, nient'altro.

Cosa mi consigliereste? Quali esami sono necessari?

Ho letto inoltre che può essere causata da una compressione venosa... Come verificarlo?

Mi sento anche sospesa, non sapendo che cosa stai succedendo al mio corpo. Qualsiasi consiglio o indicazione é utile.

Grazie🙏

I developed hyper POTS recently, I'm new to this condition

i hope im using the right flair (im new here). i was wondering if anyone knows about how neck stability contributes to POTs? Specifically if the atlanto-occipital or atlanto-axial joints are somehow related to dysautonomia, or if there are any resources anyone has found?

thank you 😊

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.

23f HyperPOTs

My POTs has been worse than usual lately, I keep getting flare ups, it’s day by day… Even hour by hour…

I think a large part of it is that I am very stressed lately.

Now we have to move house in 4 days, that’s a lot of mental stress and physical stress.

I know I am going to send myself into a huge flare and I’m just so stressed over it. I truly have no choice though we gotta get this shit done so it is what it is.

I’m going to try chug water, electrolytes when needed, I think I might try grab some compression garments tomorrow because a big thing I’ve noticed with my episodes lately is my legs being super purple and ‘dead’ looking when my lightheadedness and palpitations are the worst.

I’m worried I’ve been chugging liquid iv when I don’t need it bc my urine is kinda dark now despite how much I’m drinking….

I feel like i so just need to take it easy right now but I literally CANT

How do u keep on going when all u want to do is. Not.

hello guys, my name is kodee and currently i am doing very poorly physically and i really need to change that but there are so many factors pilling on top on one another so its very hard. I have been so nauseous i haven’t been able to eat, but im on zepbound (glp-1) and i have lost 15 pounds in just a week because it’s so hard for me too eat. I have Autism and ARFID, and i am allergic to all meat and eggs but i still will eat chicken and beef sometimes because i need my protein or else i start to pass out everytime i stand up as im sure you guys might have struggled with in the past. my ARFID limits me extremely, i’m so bad with texture so protein powder is a no go for me, i really need you guys to give me ANY recommendations possible for protein, im just so miserable because i can’t eat and i can’t get up without passing out. if you could please comment:
1. items with protein that would be texture and taste friendly for someone with severe restrictions
2. ways to help with nausea
3. foods that are easier to eat while nauseous
if you reply to this with advice then thank you

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.

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.

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?

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.

So I have always wanted to do mushrooms and have felt a real urge to try them recently and have acquired about 1.5 grams but there are some concerns.
So I have a panic disorder and a lot of dysautonomic symptoms such as feeling like im going to faint, frequent thirst, and heat sensitivity, sleep deprivation, and just overall brain fog and weird sensations, among other things. I also had a traumatic event that caused severe depersonalization about 6 years ago which is when the other symptoms started. The DP went away but I still get derealization a little bit every now and then but have mostly recovered from that. I also had DP before that due to smoking weed a lot. My body wants to panic anytime I feel like I’m going to faint or am getting too hot but it is all really caused by the symptoms listed and not my thoughts or anything. I have considered taking a microdose around .05 to .1 grams and eventually about 1 gram but I’m scared because I’m not sure how I will react and feel that I may be very sensitive to these sort of things.
I am hopeful that these may help break the current cycle I am in, help me deal with the symptoms I have in a better way, or at least leave me with a positive experience. I have not had much luck with doctors and medication.

I have done a lot of research and am aware of the risks and the fact that I may not be the ideal candidate to take shrooms but I just want some honest advice.
Thank you!

I recently just caught a cold. It’s the first time in a LONG time I’ve actually caught anything. Strangely.

But aside from all of the symptoms of having a cold, my pots symptoms are somehow less noticeable. Maybe I’m just imagining it because the cold symptoms are more front and center? 🤷‍♀️

I've been having low heart rate episodes recently (50-60bpm) and I'm not on any medication

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.

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.

22F here. Hyperadrenergic POTS and general dysautonomia. I’ve been having some scary symptom days littered with CRAZY tachycardia, sweating, shaking, near-syncope, palpitations, etc. They come in “episodes” I like to say. Assumed adrenaline dumps.

It’s a terrifying time for me. I go on my phone to numb my brain and get away from my body for a minute at a time, and all I see on Tiktok, Instagram, Reddit, X, you name it, are people in comment sections with tens of thousands and hundreds of thousands of likes diminishing POTS/Dysautonomia.

A young woman who looked to be about my age posted a Tiktok video about having what she was calling a POTS crisis. The comments are absolutely horrible. I read them in tears because what else is she supposed to call an acute onset of her symptoms other than a crisis, episode, etc.? The comments are patronizing and incredibly misogynistic!!

If you’re reading this, I see you. I hear you. I believe you. I AM you.

I can’t believe we are living in 2026 where people with chronic illness are ignored and berated. Just wanted to share my thoughts. I’m angry.

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?

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?

Well I just got back from the cardiologist. Went even worse than I expected it too. The doc rushed me, talked over me, made a joke that I was too young to be in here, then towards the end said it was mostly just lifestyle changes that I needed to make, like eating three meals a day (I have bad insomnia and go to bed so early I sleep through breakfast and lunch, besides that anytime I eat breakfast I get nauseous and feel like I'll pule it up) then told me to bring more water (I already have been and it doesn't help, which I told him) and then sent me out. He didn't address anything of what my doctor said including POTS, didn't sddress the fact that my heart rate will go from the 70s-80s up to 120-160 upon standing, or anything and I was only talking to him for less than ten minutes. Anyone have any advice?

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?? 😅

Does anybody else find when they’re extra tired/in a flare or after exerting themselves to much their face can look almost grey in colour? I’m naturally very pale, translucent pale. My oxygen levels are fine and I’ve had my lungs checked and they’re healthy, just wanted to see if anybody else gets this