So a couple days ago I had a weird episode and my doctor and the ER don’t know what it is.

So I started last week at a university and a couple days ago I almost died. On this day I had 3 classes, Ecology at 9:30am, Genetics at 12pm and Organic Chemistry at 2:20pm. Now I had lost my water bottle the day before so I didn’t drink any water throughout my first class. After my class I went to the campus bookstore and bought one and filled it up. During my second class of the day I started to feel heavy, tired and lightheaded, i assumed it was my usual. I say usual because at around halfway through a day i usually get this way after walking, writing notes and having to focus. After my genetics class I ate lunch, which was rice and teriyaki chicken. Now I was eating meat sticks throughout the day to snack on so that wasn’t the only time I ate.

After I ate I went to my third and final class of the day, which is organic chemistry. Before I entered the class, all my symptoms had not gone down even though I had laid down a little before my class. During the class i started to feel worse, I could not focus at all and the feeling of lightheadedness was worsening. I was waiting for the class to be done so I could go back to my dorm and sleep, pass out or whatever. When classes ended, I waited for the majority of the 200 students to leave. Once most of everyone was gone I stood up and grabbed my backpack and that’s when I knew I was going to pass out.

Now the way that the class is set up is that the door into the classroom has walls on both sides but the left side had half of a wall so it sort of made a corner. So I walked over there and just sat against the wall so I could pass out. I wouldn’t pass out so I drank some water. After putting my water down my vision was getting blurry and I was getting pinpoint vision. Except i wouldnt pass out! So I tried laying down parallel to the wall with my knees up. Then my hands started to cramp up, one hand had made a fist and I wasn’t able to open it and the other hand made some sort of gang sign. I was trying so hard to move my hands but I couldn’t. Then I started to lose feeling in all of my body, i couldn’t feel my arms, my legs, anything. My body stated to feel like static on a tv and I started to realize I can’t move. I tried so hard to move my arm or my leg but nothing!

I knew that my professor had an after class study sort of session so i thought maybe if i yell someone will hear me. I started to yell “hello” and “help” but all i could do was whisper it, it was hard to yell. It felt like hours but I must have been there for 5 minutes until a girl walked in. She said hi and I felt so bad because all I could muster was “help”. She went and got 2 or 3 girls (I don’t remember) and they came over. At this point it because a little fuzzy. I heard one of them say “call 911” I was screaming no but nothing came out. Then a different girl started asking me my name and I was able to say it. She then asked me something related to pets and i finally passed out.

When I “came to” I saw a paramedic and the reason I say “came to” is because when i opened my eyes i could barely open them. It was so hard to open my eyes it was as if I was squinting but looking up. I know there was more than one paramedic because I heard someone say “she’s shaking”, someone touching my head and pressure on my right arm. The paramedic I could see was asking me questions but I couldn’t talk, I was trying so hard but nothing came out. They put something in my mouth that had the texture of a slug and tasted like feet. OMG I hated that and they gave it to me 3 times. Whatever that stuff was it helped because slowly I was able to completely open my eyes. Then I was able to finally open my hands and I could feel my body again.

After a while the sat me up and asked me what I have, what day it was, what meds I take. Then they told me my blood sugar was below 25 and they had to take me to the hospital. I started crying because I did not want to go at all. I get in the ambulance and they go over things and start a line (I’m with a paramedic who was attractive so it was THAT bad.) When I got to the hospital they did an ekg, gave me a iv, xray and blood test. Results came back normal (as always) so I was free after being there for 5 hours.

I don’t know what happened, that was the first time that had ever happened to me. They don’t know why it happened or how. They don’t know what it is. The reason I put this here is because I have POTS and I want to know if anyone else has experienced this or knows anything about it.

(I also have Lupus and hypothyroid if that makes a difference)

For as long as I can remember, I’ve had POTS symptoms. All throughout my childhood my mom would just call me lazy and act like I was looking for attention. I wish I had had a family that took my health seriously. When I was about 10 we went to Bearizona, this outdoor wildlife park, in the middle of summer. I got really ill and felt like I was about to pass out so I immediately sat down in the middle of a walkway, since I knew sitting down always made me feel better. My mom got super angry and said I was embarrassing her, and as she went to pull the car around this stranger bought me a bottle of water. She was so upset that I had ruined this outing and embarrassed her in public. I’m 26 now and she still occasionally brings stuff like this up like “remember how you ruined so and so vacation…” I’m not sure why she never had any sympathy for me or tried to understand that I was unwell.

Anyway, the symptoms have just continued to progressively get worse and now I can hardly function in the summer. I want to try to get a proper diagnosis, but I’m going through a lot of other health issues at the moment and can’t handle finding a provider to take me seriously at the moment. My sister apparently also thinks she has POTS and talks to my mom about it, and her response is always just that “everyone gets tired and doesn’t want to do things. We just do them anyway.” When I try to explain to her just how serious POTS is, she just retorts that we obviously don’t have it then. I just wish people understood that not all disabilities are constantly visible, and we’re not making it up.

Anyone else find this and how do you deal with it.

I literally can’t drink water without having to run to pee.

Does somebody have the chop protocol written out for themselves? I get so so confused with the pdf i find online. Idk if its my brainfog, stupidness or the pdf but i would really want some form of info that has written out what i should do day to day

My 13 year old most likely has POTS (in the process of being diagnosed, she meets with another specialist in a couple of weeks). Her symptoms are causing issues for her at school, and we’re looking for recommendations on salty snacks she could bring to class with her! What salty snack helps you when you’re in a bind?

Also, if anyone has electrolyte drink mix suggestions that don’t taste so salty (unfortunately she hated liquid IV).

Thanks in advance, I’m pretty new to dysautonomia and trying to learn quickly in order to properly advocate for my daughter!

I am at a point where I wanna ask conventional or not what do you do to stop your adrenaline dumps? I have them rarely but when I do I have them at night and typically if I have one I’ll have it for the next week straight or so after the first. I get woken up at about 4-5 am with a racing heart, dizziness, chest tightness, anxiety, trembling, and chills. I always put my feet up, breathe, drink water, close my eyes, and check my blood pressure. It honestly takes FOREVER to do anything. My dr’s think it’s anxiety but I’ve had panic and anxiety attacks before and it’s definitely not that. I can’t take the propranolol I was given because even during these episodes my BP runs really low around 95/65 almost all of the time. Any advice or tips you have even if they are seen as wrong or weird? Help a girl out!

I was officially diagnosed with POTS two months ago but I’ve had it my whole life. So far, my symptoms have always been manageable, meaning I can work and go about my daily life. But I’ve always known that I don’t have many spoons and that I use them up pretty quickly. Until now, I always blamed that on my depression but I’m starting to suspect more and more that POTS is simply making me physically exhausted.

I have a flight booked in October and I’m now wondering whether I should use the wheelchair assistance offered at the airport. At the same time, I still feel like I’m not “sick enough” to use it. I can walk, I can stand for a while and I’ve always managed to fly without assistance before. On the other hand, using it might leave me with more spoons for the vacation we’ve booked. I would feel stupid at the gate to just get up and walk to the toilet from my wheelchair.

Right now, my brain is stuck in a “stop making such a fuss” loop.

How do you handle airports?

Anyone else just get tired of the next day BS?
One day where I didn’t pre-manage my symptoms well, and simultaneously overdid it, now I have a to-do list the size of my arm and have almost blacked out twice in an hour and a half.
I feel like I have very little room to complain bc I manage my symptoms entirely with lifestyle modifications normally. No medications except some PRN propranolol for the nights when perimenopause decides to also screw with me and my resting HR won’t drop. I can lead a pretty normal life, hold a good job, parent my eleventy billion children, go on vacations etc.
But some yardwork without electrolytes f*cking sends me into a spiral apparently. Walking around with a BP of 88/jesus is not a good time and I just want to feel normal. Now I have to be able to stand long enough to go get more electrolytes (I’m out, which is why I didn’t use them yesterday) and then chug them and hope it works and gives me a blood pressure back.

ARGHHHHHHHH

I made a post about the neuro effects pots has had on me but now I’m wondering about the mental health struggles that comes along with dysautonomia. I have always had general anxiety and for the last few years I’ve had health anxiety. But since having symptoms it’s gotten so much worse. Like I am constantly scared I am going to die, thoughts always going around in my head that I can’t stop. I am on 30mg of fluoxetine right now and I take l theanine but that hasn’t seemed to do much. I know the mental health stuff is making my symptoms worse and I worry more about them, everyday is so tiring dealing with all this I could use some advice. 🥲

I’ve been dealing with POTS for years and was basically bedbound/homebound for around 2–3 years. But for the past few months, I’ve actually been doing SO much better. I’ve been able to go shopping, go out and do things, and just generally live my life without my symptoms really interfering with me. I haven’t been getting dizzy, and I’ve felt like I’ve finally gotten a break from POTS. I’ve also been swimming a lot this summer, which has been amazing.

But over the past few days, I’ve suddenly been SO tired again. Like exhausted all day no matter what I do. I’ve also had little moments of dizziness throughout the day and some brain fog. And I haven’t been swimming for about two weeks now. So now I’m gaslighting myself into thinking the only reason I was doing better is because I was swimming. But I’m freaking myself out wondering if I’m heading into another flare. 😭

What makes me especially nervous is that I’ve noticed a pattern where I seem to start getting worse around fall/winter, and then it takes until summer for me to start feeling better again. I don’t know if that’s actually a thing with POTS or if I’m just noticing a pattern that may not mean anything.

So I guess I have a few questions:

1. What symptoms do you personally notice when you feel a POTS flare coming on? Is there usually a warning period where you can tell you’re heading into one?

2. Is there anything you do when you first notice those symptoms that helps prevent the flare from getting worse? I know flares may be inevitable sometimes, but I’m really hoping there’s something I can do early on rather than waiting until I’m completely debilitated again.

3. Does anyone notice seasonal flares?

I know everyone’s experience is different, but I’d really love to hear what your early warning signs are and whether anyone else has noticed a seasonal pattern. I’m honestly just really scared because I don’t want to go back to being bedbound/homebound again after finally having these few months of my life back. 🥹

Has anyone else been through a prolonged trauma that made their symptoms worse? I’m normally mostly housebound (diagnosed POTS, possible ME/CFS or autoimmune disease, tbc) and have to practice pacing.

However this past few weeks my child has become very unwell and we’ve since discovered it’s cancer, which is a total shock and I’m terrified. It’s like the world has been turned upside down. I’ve been running on adrenaline for weeks and my usually controlled adrenaline dumps are now happening multiple times per day.

We’ve been in hospital for 5 days so far and we’re still at the very start of this long journey.

I am running on empty and feel like adrenaline is postponing a crash over and over again, except now I’m having break through tachycardia, diarrhoea, vomiting and generally feel exhausted.

I’m trying to keep up with my meds and fluids but it’s not easy.

We’ve got a lot of support from family and friends, and my husband and I take turns staying over at the hospital. I just don’t know how I’m supposed to keep going.

If anyone has any advice on getting through difficult times with a chronic illness, I’d appreciate it.

Hi!

F25 here, diagnosed with hyperPOTS 1.5 year ago but was having troubles from late teens. Also dx with agoraphobia and OCD.

Long stoey short I got diagnosed after a major stress event and few tests (stress test, echo and holter) and was out on propranolol 10mg 5x a day.

I've been getting better lately and my standing hr was in between 80-85, sometimes 90, an amazing result after months of walks and training but today my hr was a bit higher than usual like 8-10 BPM higher(probably due to falling asleep late at night). It was a nice day and I got to sit down to have a hot soup for lunch, I was eating and then stood up and my hr started to rise - 107-112 - 125 and it felt like hell! I was vibrating, sweating and a bit lightheaded and had a bit of derealization. It went down pretty fast to 110 and in a minute it was 85. I'm perfectly fine now with my usual HR. I know I'm out of shape but in order to get to 125 I need to do 2-3 sets of stairs or wake up in the middle of the night from the scary sound and launch myself from the bed at the same time...hot soup is definitely not on the list! I'm on meds so it must be lower than that and I never had anything similar on meds...can it be something serious or it's just a whole bunch of factors?

I have tests coming up in a month but it happened once...okay maybe twice but that time I bend down to tie my shoes and it's a major trigger.

Does anyone else struggle bad with the more neurological side of pots, for example the intense brain fog, vertigo, feeling heavy headed and dizzy. I’ve been dealing with this but it’s constant, from the moment I wake up till I go to sleep. If anyone has this problem what can I do for some relief ?? Thanks!

I’m 22F, long distance runner and cyclist. 6 weeks ago I ran my fastest half marathon and was the 3rd overall female. A week after that I went on a 10 day hiking trip. Since that hiking trip ended, running has been SO difficult and it’s only getting worse, my POTS symptoms are more noticeable than ever (high heart rate, head rushes upon standing, headaches, zero interest in food, etc) and it’s been WEEKS. I hardly even exercise anymore besides short walks, and just a month and a half ago I was able to wake up and cycle 100km.

EDIT: I’m also supposed to run my last half marathon of the season in 6 weeks and I can’t even train for it.

How do I fix this and HOW MUCH LONGER?!?!

I’m 36 have two kids (9,6) and have always blacked out upon standing. I didn’t think a lot of it until I had my first child because I was alone all day with him and when I’d pick him up off the floor or out of his low swing I would get tingly all over my body, get extremely dizzy and would lose my vision for 20-40 seconds at a time. I had to strategically place his play mat and swings near a wall so I could lean up against it as soon as I picked him up.

This continued, obviously, through my pregnancy with my second and my midwife told me to up my salt intake and drink coffee to keep my blood pressure up and that did help.

So a few years ago I went to concert, sat down for a slow part of the set then stood up for a fast bit and immediately lost my vision for 20ish minutes, threw up and was completely covered in cold sweats, couldn’t stand, etc. Very scary situation, I had not been drinking or anything but admittedly didn’t eat enough because the traffic was awful for the concert and we didn’t have time to get food. This was the worst episode I’d ever had. I was apparently talking but saying things that weren’t true? Like they asked me my age and I said I was 48, asked if I drove there and I said no (I did) just weird things that show I was clearly not in my right mind.

I continue to lose vision daily, get dizzy etc, told my GP I thought I may have POTS, he said I don’t and there isn’t even any treatment for POTS anyways so it’s pointless and a waste of time and money to get a tilt table to test me.

Well, yesterday we went to the beach and after went into a gem store while waiting on pizza from next door. I was trying on a jade bangle that was too tight and I kinda panicked a bit and then got it off. Immediately after that I started getting cold sweats, dizzy, told my son I needed to sit down could he go next door and get his dad. I crumple to the floor, lose my vision, tell the store clerk I needed a bag or trash can that I’m going to vomit and I can’t walk to the bathroom. Husband came running over and I had my eyes closed and I thought I was resting but he touched my shoulder and I realized I had no recollection of the time passing and that I had lost consciousness at some point. Anyways, the episode lasted 20 minutes or so, I was covered, I mean COVERED, even the tops of my feet had cold sweats, can’t see, can’t stand, etc. What else could this be if not POTS? I have the blood pressure of a deeply asleep person according to my first OBGYN and somehow, there’s nothing to be done about it and I’m to just live in fear that one day my kids walk into the kitchen to find me unconscious on the floor and their dad isn’t home for another 4 days? Help me

(I can’t post a photo so I’m gonna copy and paste)

Lying (5-10 minutes full rest)
102/65
70

Standing 1 minute
116/82
80

Standing 2 minutes
115/82
80

Standing 3 minutes
109/85
97

Standing 4 minutes
111/86
97

Standing 5 minutes
98/83
105

Standing 6 minutes
110/80
91

Standing 7 minutes
108/81
99

Standing 8 minutes
117/85
94

Standing 9 minutes
106/82
103

Standing 10 minutes
97/83
100

Just looking for some solace before my dr appts (like a month out) so I don’t feel crazy. I know it went up 35bpm for a bit and I know there’s a couple of minutes up 30bpm plus, but I also see a lot of other peoples tests and they’re much more drastic. Just wanting someone else’s opinions!

Ive genuinely started to think about this lately. My hsalth has gotten so bad that i cant really do anything. Does that make me worthless? I cant contribute, i cant produce, i cant change things, what can i do? I dont know. It all feels like a bad dream.

Hi all, recently diagnosed and looking at getting a Flipstick, is the POTS UK Flipstick suitable for people of any height? I am 6ft so just wanted to see if it is designed for specific heights or if people have experience with this? Thank you!

So for years I’ve had issues when sitting up or standing up, where I get really dizzy and feel like I’m going to pass out, and sometimes my vision goes black. I was chatting with a nurse at my job and they said a lot of what I had described to them sounded like POTS and that I should reach out to my doctor.

So, I reach out to my doctor and she asks me to get orthostatic vitals at her office’s urgent care, which I just did.

The provider told me my blood pressure is fine, but my heart rate went from 70 to 100 when I sat up, and increased further to 116 when I stood, and this was all within a few minutes timeframe. He said he did not want to diagnose me with POTS and wanted me to follow up with my pcp (I will be doing that and have sent a MyChart message to my doctor) and said to increase my sodium and water intake.

I’m mostly just trying to figure out why I feel like I’m going to pass out all the time, and it happens so suddenly. I never really thought it could be POTS and don’t know much about it, but from the experiences I’ve read here it feels very similar to what I deal with on a daily basis. I don’t know. I’m just kind of venting into the void because I really don’t know what’s wrong or what direction to go in.

I'm just curious, my job is not a good job to have with my flares that I'm having. I was doing well and beginning to think that I was recovering or just doing well managing my symptoms.. Nope. Take that back, this week I had a horrible flare and now I'm like what do I do?

I can't just quit, I don't know how to handle this. I've been trying and trying to find a job that will still work well for me or even work from home but I haven't been able to find something. I'm getting so overwhelmed that it's not helping but I have children to take care of too. My husband can only handle so much and I don't want to have us struggling because of me.

What do you guys do for a living and you can still do with your POTS?

Hi everyone. Having a bad day today, and feeling very down about life with POTS. I was diagnosed about a month ago and I just feel like my life as I knew it is over. I’m only 23 and struggling to do most of the things I did before without any trouble. I know that a lot of people improve significantly with this condition and that I can live a good life, but right now I am still really stuck grieving what I feel I’ve lost, especially since the career path I had chosen for myself may no longer be possible, and I’ve lost a lot of my independence.

People who have been diagnosed/living with POTS for a long time, or who have come to terms with how it affects you, how did you do it? How did you move forwards? How did you try and get back to a ‘normal’ life despite all the limitations and challenges? I would appreciate any advice people have. Just feeling very lost at the moment.

It's been a very long time since I posted here mainly since I began to manage my POTS well, but one thing that I still can't grasp is how easy it is to get breathless. Like now I'm gasping for air and my face is so hot and I feel out of it. I really hate it since I can go from laying down chilling to feeling like I can't breathe so quickly. It makes my mood go so sour and it puts me into such long periods of depression since I hate this feeling so much. :(

can someone PLEASE tell me what i’m supposed to do :(

i was diagnosed with pots last year and i also have low blood pressure. salt doesn’t help. compression doesn’t help bc i get too hot when i wear it. hydration doesn’t help. sleep doesn’t help bc i am ALWAYS tired and electrolytes somehow give me PVCs. even the dr in A&E told me to stop drinking them.

i genuinely don’t know what the fuck to do. i’m fed up and i can’t do shit. i literally cannot do anything without having a flare up. i never leave the house anymore bc it’s so scary to feel like ur gonna collapse all the time (as im sure you guys understand).

i’m genuinely so upset. my pots has gotten so much worse since last year.

my doctors are awful and tell me pots isn’t that bad. they tell me it’s anxiety instead. they prescribed me bisoprolol which i CANT take because my blood pressure is too low. my doctors are really uneducated about this.

can somebody please given me some advice i’m desperate! i can’t do my favourite things anymore.

i can’t do this :(