Okay..I don't know if this is just me. But whenever I have a strong emotion such as happiness, sadness, anger, etc. I get full body tremors. I'm talking full body shaking from my fingers to my toes. Everything. It doesn't matter how calm I am, it just happens. It's like my nervous system is just firing off stuff, creating adrenaline dumps for no reason. Sometimes it lasts a minute, sometimes it lasts an hour. I know this is common for panic attacks but I don't think it's that because even when I'm talking to a friend and I'm just happy I get this. Do y'all get it too? Or am I weird? It's like my body just doesn't know how to function so it's trying to relieve the emotion by physically shaking it off.

Idk if I’m just in a flare up right now because before even with having pots my symptoms were manageable and I could go outside and live a little but now something has completely flipped and idk if it’s a sign of something else or just a flare up. I feel extremely heavy and I feel like I’m just going to fall face first even sitting down. I only feel somewhat decent laying down and also life feels so unreal like I’m walking in a one dimension world and my vision is fucked and off focus like I see double I can’t even focus on looking at one thing. I feel like I’m going to die does anyone’s pots feel like this too or should I go back to my doctor?

I am not diagnosed wit POTS but after reviewing symptoms, testing my bpm multiple times a day and watching countless videos, I believe I have it. Anyway, my symptoms have been getting worse and today, I was working and doing something called a cleanplay (long story short, a lot of up and down and up and down movements) and I nearly fainted a few times, just felt overall groggy, dizzy, and my heart pounding, and remember hearing about people with pots using salt to help alleviate symptoms, and my work has sea salt packets so I tried that and OMG it was like night and day… though it was temporary effect. Just thought it was funny this whole time I could’ve been Helping myself with salt

Idk if I’m just in a flare up right now because before even with having pots my symptoms were manageable and I could go outside and live a little but now something has completely flipped and idk if it’s a sign of something else or just a flare up. I feel extremely heavy and I feel like I’m just going to fall face first even sitting down. I only feel somewhat decent laying down and also life feels so unreal like I’m walking in a one dimension world and my vision is fucked and off focus like I see double I can’t even focus on looking at one thing. I feel like I’m going to die does anyone’s pots feel like this too or should I go back to my doctor?

I went to get my holter today for the 72 hour test but! The people at LifeLabs seemed super confused and every tried to straight up tell me they don’t do the test after I booked the appointment with them hours earlier. It took 3 nurses and a supervisor to figure out what seemed like common sense to me but the worst part is this: nurse pulled out a bucket of stuff and I saw some random differently branded batteries maybe one or two at the bottom (looked old) and she put one in the holter, well guess I was right to ask if it would die seeing as it’s been less then 10 hours and yet the monitor is going to die.. yay! At this point I don’t even trust that place to be honest.. what if they mess up my results or something because they had NO CLUE what they were doing Hell! It took them 20 minutes to find the damn thing!

What do yall think?

Does anyone else have issues with food raising your BPM? About a year ago I could hardly eat because I would always be gasping for air and my heart rate would be fast but as of now I can eat relatively okay except for pizza specifically. Never had an issue with it except after Covid. My BPM will accelerate when I stand up and walk and such but I’m finding it also accelerates with specific food. Does anyone else have this issue?

Hi! I pretty recently got diagnosed with POTs, and my cardiologist wanted me to try Metoprolol. I have already low blood pressure and even his nurses were curious as to why he put me on it, but I was told to just give it a try.

I’ve only took it once and at half of the dose he initially prescribed (took 12.5mg), and I noticed it made me feel almost identical to Ativan or something. Like physically my heart beat was a lot less fast and hard, I couldn’t notice my heart beating aggressively and uncomfortably anymore which was cool, but I felt like it was also affecting me mentally? The next day I felt pretty depressed and just off it was weird. It did for the maybe 4 hours it had effects, make me feel a lot less anxious though.

Is it normal for Metoprolol to affect you mentally? or is this just it lessening my anxiety

I’m both excited and dreading this appointment because of how difficult pots can be to diagnose. I truly don’t know if I have it.

This is the initial first meeting so I’m not expecting any tests except maybe an ekg. I want to ensure I can advocate for myself confidently and not feel like my time was wasted.

Does anyone have any tips for a successful appointment?

I was diagnosed with POTS in November of 2023 after having COVID. I always had minor symptoms of POTS but it escalated drastically after being sick. I have a cardiologist who just told me to increase my salt intake, water intake, get good sleep and wear compression socks. I try to do all of that and nothing is helping. I have dizzy spells throughout the day, sometimes seeing stars and almost collapsing. Headaches almost everyday, weakness, fatigue. I never get a full nights rest - I’ll wake up several times in the night either from overheating or my heart pounding. My temperature regulation is horrible - I’m either freezing or so hot to the point where I’m sweating and need ice packs to cool me down. I don’t know what to do and am hoping for some advice on how to navigate this new way of life. It’s becoming increasingly more difficult to function throughout the day. Any advice is greatly appreciated ❤️

My blood pressure has been low well for me I used to run 120s or so and now I'm running low 100s but it makes me feel awful like really fatigued brainfog idk like I'm high or something on top of exhausted it's rather unpleasant and makes me anxious. I have a Salty diet maybe not enough salt tho and maybe I'm not drinking enough but i feel hydrated qnd my pee is light . I feel when I lay down it goes lower than sitting up or standing up. Idk what to do.oyher than talk to my doc about meds to raise it a lil but i.dont want to raise it too much or deal with side effects as it's not truly low it just feel bad to me. I guess my question is what helps you guys feel more energy and bring up your bp without meds and what are your symptoms when you go too low other than passing out?

So my cardiologist has run me through with metoprolol (made me pass out more) and atenolol (did fuck all for my symptoms) and so now she's having me try fludrocortisone as a last resort. Has anyone else been taken completely off of beta blockers? What's been y'all's experience with fludrocortisone?

I've dealt with a lot of symptoms of POTS for my whole life and only somewhat recently figured out what POTS was. I told my doctor about my symptoms and she suspects I have POTS. She said I'd have to see a cardiologist and do a tilt table test. However, for a few reasons, that would be very hard for me. So, I'm just wondering, is there any other way you got diagnosed?

My pots is mostly under control these days but a few minutes ago I was laying down and my heart rate was sky rocketing. A couple minutes later I had an urge to go to the bathroom. Sorry if this is too much info, but I’m wondering if anyone else has this experience. Like does anyone else get a heart rate increase and then have to go to the bathroom?

Hello, I need recommendations for compressionwear which won't tug on my shirts - are there any which use smoother materials than cotton (like gym clothes, since clothes glide over them) and are still reliable?

I have no idea what to do, I can only stand for like 10 minutes until my symptoms really start to flare up. Every single time I go to the store my legs hurt so bad, I get pre-syncope and very dizzy. I almost always tend to end up sitting on the floor to deal with this. Im basically stumbling around most days. I wear long compression socks daily and they help, but not much. I feel like a wheel chair would really help but I’m scared about asking because I feel like my family/doctor doesn’t know the full extent of how I feel. Im worried my family would think thatd be “too much” because I can walk. Not everyday is bad like this, but most are. When I bake I use an office chair to get around and thats helped so much lol. Thank you so much for reading this, advice would be really appreciated :)!

No amount of water, salt, electrolytes, or compression make it possible for me to do anything. I can’t make my own food or shower on my own. I’m 23F and this came on March 18th 2024. I had 0 virus 0 anything. I feel so lost. I feel like a kid again. I can’t believe this appeared out of thin air. Ugh 💔

This isn’t directly pots related but it all ties together as far as chronic illness goes.

Weight has always been a struggle for me. Was always skinny as a child. I was able to put on weight in high school until my pots started around 17. And pots just compounded my gastro issues.

I went from 155 pounds to around 120 in one year and never recovered. I spent a few years bouncing between 110 and 120 even dropping as far as 105 one month when I had the flu and a stomach bug back to back. For probably the last few years my weight would go between 120-135.

But.

I’ve had a goal of getting up to 145 pounds for years now. Probably 10 years.

It’s taken 17 years to get back to that weight but I finally hit it!

I’m dizzy every day! I’m so sick of it. Any tips?

So I had my first PT session today (swimming/recumbant, but just swimming today), and I went in low on water and salt since I was rushing to get in after missing an alarm :/ I also am changing my adhd meds and they are lower dose rn, as well as an ovarian cyst I'm looking into currently.

After the session, I'm struggling to drink enough to fix my mistake, things sorta taste wrong, and I'm generally lower for my BP while laying down. Not having the shortness of breath or joint pain so much rn at least, but most other symptoms I'm having.

I'm not sure if this is due to having done my first session and going too hard without my stockings (cuz I was swimming so couldn't wear those) or if this is more indicative of PEM? Usually when I get flaired up after pushing too hard it's either immediate like today or in 1-3 days. I'm just honestly not really sure if the first PT sessions are rough on you, if it's because ai just fucked up by going in less prepared for salt and water, or if I should be worried about something else I gotta mention to my doctor... I'm usually mildly symptomatic with my adhd meds and stockings so long as I stay up on salt and water. Without them I'm basically bed-ridden.

Anyone with experience with aquatic PT would be a huge help rn :) This may just be a bad mix of stuff happening all at once.

Hello all! So I am 2nd year college student studying neuroscience and psychology and despite my disability I got an internship this summer! I will be working with autistic kids and adults at an institution for autistic kids and adults! It's 40 hours a week with good pay! I've been a daycare teacher in the past so I'm sure I'll be good with the internship.

Had my first appointment today after receiving my diagnosis. For context: currently overseas (military spouse) and had to be seen off base by a cardiologist because there are no cardiologists on island that see dependents. Doctor was amazing but couldn’t do anything beyond provide a diagnosis and suggest next steps. He suggested Ivabradine and bloodwork to check my hormone levels. Came to my on base doctor only to find out that none of the hospitals here even carry ivabradine and the only other medication they (naval) would provide for POTS is propranolol or midrodrine, both of which would exacerbate preexisting conditions I have. However, I can’t keep going on untreated until we finally PCS from here so back to propranolol I go until we move back to the states. It’s just one of those days that I’m feeling defeated

So a medical emergency happened in my family and naturally it stressed me out. It at like 3am and I ended up not getting to sleep until 6am. Now it’s almost 8pm, everyone is fine and ive been absolutely ill all day. Extreme nausea (I feel part of it is bc the family member who had the issue vomited so now I feel sick bc I have a sympathy vomiting issue lmao. I’ve had diarrhea, dizziness, heart palpitations, high heart rate. Pots is really acting up. Everyone else around me is fine and calm but it feels like I was just hunted by lions. I can’t just be stressed and then be fine later it makes me physically ill for days on end after. I’m tired of it. I’m also getting off an antidepressant so that’s a reasonable explanation for the nausea as I have been feeling that for the last few days but seeing someone else vomit makes it feel more serious lol. I don’t think that I’m actually sick, I’m pretty sure the family member just ate too much before bed and had acid reflux but we thought it was a heart attack bc he had chest pain too. So I’m hoping it’s not a stomach bug or anything like that. I feel like it’s just POTS being POTS and making everything worse.

Before I even knew what PoTs was I always wished I could travel around in a wheelchair on my bad days, in fact it confused me that nobody else ever mentioned feeling that way.

Anyways… I hit a low that I’d never felt before. I couldn’t stand up without an immediate 140 and I felt like hell. I was going through a short period of feeling well and then a long low period before that, and it really opened my eyes about how you can’t live normally as a potsie even if you try to force it. So I bought a heart/activity tracker, reached out to my cardiologist to hopefully get meds and now I can’t stop thinking about a wheelchair.

If I got one I could go shopping and save both energy and money instead of getting deliveries, how I can save my energy for things that I enjoy. I’m meant to be going to a convention with my mum to support her but I can’t help feeling dread to how I’m going to feel both during it and after.

It’s hard fighting and trying to keep up with healthy people… im sure you guys know. But how do I explain this to my husband? He sees me sitting on the floor all the time, he’s seen my crashes. But he’s also seen me active. He thinks that I’ll become too reliant on the chair and it’ll make my condition worse, surely that’s not true right?

I'm only recently diagnosed and was wondering it anyone else gets this symptom?

It's a cold feeling, like a wash of cold water from my head down to my arms and my chest and then my heartbeat sky rockets. It feels like it's going to jump out of my chest and then it triggers immense anxiety. I have a panic disorder so it usually makes me spiral

I don't know if it's pots related or anxiety but I'm definitely finding myself having way more panic attacks lately. I only feel "okay" when I'm laying down. I've even found that I can't stand up for more than a few minutes because this weird feeling comes over me so ive been bedbound and it's all just overwhelming because is it pots? Anxiety? Pots related Anxiety?

I do have a new cardiologist appt next week and therapist but I'm just feeling really hopeless about it right now

The only thing that has helped me is caffeine but that makes the crash a lot worse so if anyone has any tips please let me know. I know this has probably been asked before but I just have no clue how to get up and do things without needing to sit down every 5 minutes. Thanks for any tips if you have any❤️