r/POTS

How do we feel about this? My cardiologist didn't give me the option to opt out. They just informed me it was about to happen. I can see why it's easier for them to just look at me and talk instead of typing away the whole time but I don't know.. it feels yucky and invasive and bad in general. It seems like it's becoming medicine new standard practice because my therapist just opted in to have AI transcribe our sessions too.

I have so many things going on at any given time I swear the second I sit down in front of my doctor, my mind just goes blank. I'll be dealing with something for weeks and then completely forget to mention it on the spot. Or I'll bring up one thing but forget the three other things that are probably connected to it.

The worst part is I never know what's actually worth mentioning. I always leave the appointment and immediately think of five things I perhaps should have said.

Has anyone found a good way to deal with this? I feel like I'm wasting my appointments and then kicking myself afterwards. Would love to hear how others handle it.

This past year I have been having extreme leg pain all up and down my legs, from the bottom of my feet to my upper inner leg. I’m constantly wearing compression socks and sometimes even put a heating pad around my legs if they hurt that bad. I have even been stretching my legs everyday to see if it would help but it hasn’t. Any tips??? 😭😭

I'm really sorry I don't think I have pots.

Last Wednesday I was away from home and in the middle of the night at 3am ( couldn't sleep but was laying still) I got a notification saying my heart was super high but I wasn't moving ( 154)

So I call the NHS they sent me to doctors and then a and e they said they think I have an infection( they did an ecg an xray and ct scan). Gave me antibiotics I felt sick all week ( though I did feel fine when my heart rate was high, but I had nerve damage in my shoulder at the same time so that hurt)

Everything I eat I feel like I'm going to vomit. I thought it might be the antibiotics but I finished them yesterday and I still feel super nauseous.

My heart rate is still going super high but only when I move now so like getting dressed or getting out of bed.

I know this is stupid but I Saw a video on tick tock ( because being on my phone is all I have been able to do) and there was a comic skit about pots and I was thinking. How dose pots start? Could my inffection have caused this?

My GP has ordered a tape test for 3 weeks tome the doctor in the hospital said it was urgent ( I think because my inflationary markers in my blood were also super high)

I don't want to go back to hospital. But I'm not sure ignoring this is a good idea either because it's my heart. Seems important. ( also I do t want to be in bed foe a month or more if I can help it)

I'm 40 and female if that helps.

I’m right at the beginning of my diagnostic journey and I feel so helpless and lost.

I spent 12 hours in A&E yesterday due to feeling surges of adrenaline, intermittent palpitations and yesterday waking up in the morning covered in sweat with a hr of 103. They did a standard ECG (normal) and bloods (normal) and said I should go via my GP to arrange a holter monitor, and that was it, over 12 hours.

Unfortunately, the NHS waitlist for cardiology and even holter monitor is seemingly nearly a year and I don’t have any confidence I will be taken seriously at that point anyway.

Frustratingly because I already take Propranonol for anxiety I think it also masks the fact that I do have high bp and I do have a high hr even at rest, and as much as I was trying to hold off taking my propranonol yesterday (I take 20mg 4x daily) everything was taking so long that I eventually had to take it and ofc it would be 1-1.5 hrs after taking it that they would decide to take my bp again and say “good news your bp and resting hr are fine”.

They obviously didn’t do any active stand testing at A&E but during my active stand testing at home every time my hr still goes up by 30-40bpm and stays there. My systolic bp tends to go up initially (from 120 to 144 after standing for 1 minute) then settles around 110 for minutes 2, 3, 4 etc, and my diastolic doesn’t change much at all. Anaemia, thyroid etc all ruled out.

I don’t have health insurance and I don’t have much money at all.

I am thinking this seems more closely aligned to hyper pots (?) so in particular I’m interested in dr’s that have knowledge in this area where bp is high alongside pots symptoms.

So my questions are:

1. I am not asking for diagnosis but for those of you diagnosed with hyper pots, am I thinking along the right lines in terms of potential hyper pots or am I completely off the mark?

2. If you could afford to have only 1-2 private consultations with any dr in the UK, who would it be and why?

🙏🙏🙏🙏

I tried diluting it and adding ice but the taste still makes me nauseous.

pls it's only 20 degree celsius and i feel like im dying bro 😭

My collage is planning on going to London in July for nearly the whole day and its going to be a lot of walking. I suffer quite badly with leg pain, often having to use a cane or wheelchair on my bad days. I also struggle to keep drinking throughout a day so I know if the day is hot, I'll struggle a lot more than I need to. So I was just wondering if anyone has any advice for long days out? This advice can be different walking strategies, drink recommendations, or snack recommendations

Thank you!

I usually take a 1gm sodium chloride tablet at breakfast and bedtime. I ran out and can't get more today. I have no thinking power. What's how much like pink or sea salt should I eat to replace that???

Got put on bisoprolol for dysautonomia/pots with hyperadrenergic features. I started it a couple weeks ago and my heart rate was immediately much closer to normal.

However, I'm not sure if I feel better overall? I have way less palpitations, but I feel tired and sluggish 24/7 and I'm starting to get tired of feeling tired and running on energy drinks. Still spend about as much time being horizontal and stuff.

Does this go away or am I stuck with it? 😵‍💫

I am a wildlife biology major in college and am steadily starting to realize that I may have to change fields because of my health. I am going into my senior year and I will be finishing my degree one way or another. But working with wildlife is a rather physical job and I am starting the process of looking at other options. I would love to hear what you all are able to do for your jobs and how you all get through day to day. I have always been someone who likes to move and wants to do more physically based things, but I'm not sure how possible that is going to be if things continue to get worse. Basically, any advice on how to cope or what you all do for work would be appreciated! Thank you for reading and all that!

I was diagnosed with hyperPOTS in 2023.

I just got out of the hospital where I spent a week related to complications of gastroparesis.

I still had "normal" POTS symptoms, but I'd gone so long without an adrenaline dump that I genuinely was starting to think that the hyperandrenergic part of my disorder was gone.

In the hospital, they didn't really understand why I was being prescribed guanfacine. They thought it was for my blood pressure. I kept trying to explain that it wasn't, it was for my hyperPOTS, but they wouldn't listen, and because my blood pressure wasn't high-- it wasn't low either, just normal, while also on metoprolol-- they held my guanfacine.

I spent the entire time I was there having 4 or more adrenaline dumps per day. I've been out for several days and back on my meds and I'm still having them.

Point well taken: meds work, and that doesn't mean the underlying condition is gone. Just in case anyone else out there was having a similar thought process, I thought I'd share. Also, if anyone else has had a similar experience and could share how long this lasted, I'd love to hear from you!

up again due to the restless leg sensations… it prevents me from sleeping nearly every night and if it’s not that keeping me up it’s my hyper adrenaline POTS symptoms keeping me up 😭 i’m so frustrated and want a different body…. anyone else deal with these restless leg sensations??

I guess both but I’d just like some confirmation and does the blood pooling cause the heart rate to spike???

✌️this would help me a lot so I can understand what to do

Please don’t shame me. Honest question. Thank you.

Much healing to all.

I'm so tired of being tired. I've always been someone who experiences a lot of fatigue, but it has been so bad as of late to the point that I finish my classes for the day and I feel like I can't do shit. It's really taking a toll on my mental health and productivity.

I'm already trying to drink a lot of water and eat a lot of sodium, but I have to be careful with it because too much sodium gives me headaches. Sleeping more doesn't help either, as I hardly find my sleep to be refreshing.

I’m genuinely curious as I know that cooking can be hard while having POTS because most of it has to do with standing and attending to food. I often feel bad about how I eat because I usually just buy frozen food to throw into the air fryer. What does everyone else do?

Do other people mostly experience symptoms only when they have been exercising and then change positions? After about 35 minutes of Pilates, my POTS symptoms really kick in when I sit up or stand.

Background: My tilt table test was not positive and my stress test was fine. That makes sense in the context of my symptoms... I need a stress test followed by some bending and kneeling to trigger my symptoms 😆.

Hi! im 24F and i have severe anxiety and ocd, im really sorry if this is the wrong place to post this!! im new to reddit and not 100% sure where else on reddit to go.

im deeply terrified of POTS ive seen how it has effected a family member and it has really worried me. my ocd has latched onto it basically for the past few months. i feel so guilty about it. i am also on antidepressants but i need a dosage increase. also quite unfit due to being housebound currently.

i do not have any symptoms upon standing apart from a fast heart rate. i can even have a faster pulse knowing i have to stand up too. i have a phobia of fainting (i know not everyone with POTS faints!) i have talked to my GP but she said she isnt concerned. i have never fainted or felt like i will faint while standing.

i dont have any other POTS symptoms but my heart rate has reached 140bpm while i stood up and i got too anxious to check it again so i sat back down and cried. i am very embarrassed of this fear and i dont have anyone to talk to about it. i also have a very bad diet due to ARFID, so i know i am deficient in vitamins, which im slowly working on. i am also worried that this is POTS, but, i am unsure.

any questions of advice or anything else is welcome!!
thank you

P.S - i am really embarrassed, please be kind ❤️

So, as the post says, for practically my entire life (or as far back as my memory and my medical records go) my heart rate has stayed in the mid 80s.

Never lower, even if I tried my hardest. But for some reason (which I struggle to understand) it has been in the low 60s for the past week. Sometimes it even feels like it'll be in the high 50s (I can't confirm this). Yes I still experience my typical POTS symptoms but there are also some days where I have POTS symptoms upon standing but my heart rate does not change all that much, going from 65>85 upon standing. Though lately I am in my high 110's-120's when standing.

I don't think this is related but the couple of days before any of this started I spent several minutes breathing lavender and rosemary herbs without halt.

Anyone ever experienced this? No new symptoms. Just somewhat concerned but please let me know