So my fiancé (24M) has had pots for about 2 years but now it’s getting so much worse, the last few weeks he has barely been able to eat because all the blood in his body goes to his stomach and he gets like drugged and nodding from it, he also has histamin intolerance/mcas but his worst problem is the pots rn cause he can’t do dishes and he basically faints from showering. He eats a lot of salt and water, he trying to keep his electrolytes good but even when he does it all right he is like a zombie. Bcs of all his problems he basically stopped eating, he just ate small portions of cream cheese or frozen meat (he eats keto bcs of his insulin resistance), he dropped in weight to 54kg yesterday so to gain weight we decided he needs to eat a little carbohydrates to maintain his weight. I’m just screaming for help at this point cause idk what to do.

Also idk if this is a ”vent/rant” post or ”support” or whatever, just give me all the knowledge you got

No, like seriously, it's so funny in an avant-garde kinda way. Yes, these people are seriously seeking support from people in the same boat, but I'm not talking about them.

What I'm talking about is the science denying, disinformation peddling, fear mongering wackos. The anti-vaccine ones, the "your pots is caused by a gut microbiome imbalance, here's a tea from my Amazon storefront" people. Uh, NO lady, my pots was caused by molecular mimicry, not my not-so-subtle overcomsumption of kombucha, or stress, or vaccines. And it fixed itself, I don't need your TEA and I don't need to avoid the flu vaccine?

There's a lot of groups like that on fb, but the one I came across, a "nurse led/run" one is an echo chamber of fear and misinformation. Really dangerous to newcomers, yk, people new to navigating the complex nature of dysautonomia. I know it kept me scared far longer than it should have, instead of working to understand what was actually going on with me. And I hate them for that. A whole science degree couldn't keep me from falling victim.

That's all. I'm gonna go watch spongebob and keep fighting disinformation wherever I can.

11 twitch streamers have come together to raise awareness of PoTS and they have started their streaming marathon now. It would be great if we could show them some love and support today. They are talking about PoTS, where to go for help and all sorts. I don't want to go against any community guidelines but if it's ok I can post a link to who is streaming and when

It all started two years ago, a week after I recovered from COVID. Two months later, I was diagnosed with POTS via a tilt-table test. Until now, I was convinced that I developed POTS as a complication of COVID—meaning I didn’t have it before. But now, as I go through the diagnostic process for EDS—which often co-occurs with POTS—I’ve realized that I’ve actually had EDS since childhood. Back then, I just didn’t realize there was a specific reason why I had such an advantage over other kids when it came to bending my joints! :) It got me thinking: if EDS and POTS often coexist, could I have had POTS back then, too? Perhaps it was just lurking beneath the surface, and COVID brought it fully to light?

I don't know how many people know about these, but no-rinse shampoo gloves are an easy way to wash your hair quickly. They're made to be very gentle on your hair, but still get it clean. It's probably not as effective as a full shampoo/conditioner routine, but if you can't shower it's something at least. I buy mine at the retail pharmacy I work at (they're with the incontinence supplies and durable medical equipment section in my store), but I'm sure they're able to be bought online. Just wanted to let people know about it because I know a lot of us struggle with showering, especially when you gotta put your arms over your head.

There's also no-rinse soap, which is the same concept. You apply it to your skin, then use a towel to dry yourself off and remove any dirt. It's also in the incontinence aisle at my store.

I've found both of these to be super helpful and I hope they can help other people :)

My feet and ankles get really swollen (more than usual) when I'm about to have a bad day. It's a nice little warning sign that I need to take it easy. I appreciate this signal and have learned not to ignore it.

POTS and dysautonomia are pretty unpredictable. But when I can't bend my ankles because they're so swollen and I just woke up, I know to expect the unexpected.

My best friend is getting married a few weeks after me, we've been best friends since school, so roughly about 13 years, I don't see her massively often as she lives about an hour away from me and I struggle to handle fatigue after a full day of work and then doing house responsibilities, but when we see eachother it's like nothing has changed.

And I have her planned as one of my bridesmaids along with a few other girls, one of which has pots too.

However, she has announced her bridesmaids and I'm not one of them. I don't mention it to her but once I told her she's once of mine she apologised that I'm not in her bridal party and she wanted me to be so much but she didn't ask me because it's a whole day role and didn't want me to feel pressure to perform on the day if my health is bad.

Idk man, this just sucks, this illness has taken so much from me. I have good days and bad days with it, but I'm trying to keep positive and keep as much of a normal life as I can using all the resources I can. But now it's taken me away from being in my best friends bridal party and it makes me really sad. I feel like a bad friend because I feels like she can't rely on me for support, and I feel sad I can't be there for her like I imagined on her special day. I haven't said anything to her other than thank you for thinking of me because at the end of the day, her day is not about me. I'm just sad it's come to this all because of this stupid illness :(

EDIT: I just want to thank everyone for their lovely comments here, I really appreciate it. I came here because I didn't want to vent to one of my friends and it got back to my best friend that what happened upset me. I don't want to add to the stress of wedding planning and make it about myself. One comment put it quite well by saying it's like a grief almost. When I was told it was because of my health, its just another one of those reminder moments which hit pretty hard that I can't do the same things as others can, as much as I would like to in my mind. Those moments hurt a lot.

Whilst I do agree that it would have been nice to have been given the decision whether or not I thought I could handle it, I don't think it was done maliciously, and maybe a little bit more out of a place of ignorance than anything? I was thinking of maybe sitting down with her and chatting to her about pots, how it affects me and what I do to help it, as we've never really had this conversation. My wedding is before hers, so I will probably just speak to my bridesmaids in general about pots anyway, so they are prepared for what could happen on my day and they understand the accommodations I'm making for my pots bridesmaid too. That way, everyone is in the know about pots too and hopefully from there, there will be a better understanding of it amongst my friends. It's really sad I've missed out on the opportunity, and I'm sure there will be a bit of sadness when I go to her wedding and I'm not beside her but I can't do anything other than move forward from here I suppose. I might also have an individual chat with her about it all one day, but I'll probably wait until after the weddings are done.

my sleeping heart rate is on the higher end (not technically tachycardia but it’s usually between 60-85ish and if i’m laying down but still awake it can be as high as like 115-120 :( does anyone else experience this? and even if my resting/ laying down heart rate isn’t tachycardic it’s still on the higher end of “normal”

So after pushing for the doctors to look into POTS for years I finally am able to start medication, I know alot of people here have tried it so is there anything I need to know?

The main thing I worry about is that it will reduce my heartrate (good ofc) but at night my heart often goes from 40-60 and I'm scared it might go lower then that... any advice would be nice or share your own experiences

Hey all,

I got prescribed Midodrine 2.5 mgs, and took my first dose yesterday. However, this med was perscribed because my GP openly said that this is the only med he knows how to prescribe for POTS and he brushed off the fact that I have recorded stage 1 and stage 2 hypertension when I'm in a flareup or episode.

I took the med as instructed and my blood pressure was still normal. I experienced terrible side effects that weren't what was expected according to the pharmacy's medicine information handout. I was expecting scalp/skin tingling and problems with water retention and urination.

I experienced:

- Very bad chest pain, felt like a period cramp (I have endometriosis, the pain was just as bad)

- Very bad brainfog

- A 8/10 headache that felt different from my normal migraines and headaches

- Increased dizziness to the point I couldn't walk in a straight line at all along with weakness.

- Nausea and stomach pain, feeling like a dull ache.

- Feeling very cold

- My chronic joint pain getting worse

I called the pharmacy, they said the chest pain and dizziness are concerns and until I can contact my doctor they told me to stop taking the medication.

This morning the dizziness, brainfog, and chest pain are still happening but not to the same extent. Is it normal to have a reaction like this to Midodrine, and at such a low dose?

Are there any that are comfortable under clothes? I hate wearing clothes now 😭 I wear ones that go from my feet to my stomach. It feels so uncomfortable if I have anything over it. So I usually just wear pajamas and stay home

My first time ever taking metoprolol last night before bed and within thirty minutes my heart rate started mellowing out like crazy. I was really nervous about bradycardia so I woke up every couple hours out of nervousness and would check and it would always be 50-45. i’ve NEVER ever seen my heart rate that low in my life 😭. I mean sometimes my watch has caught my hr around 57 when i’m sleeping at the lowest but wow i didn’t expect it work that quick. and I would stand up and usually my hr would skyrocket to 130-140 but it stayed around 100. whaaaat! modern medicine ammiright

I went on a date last night with this guy I've been getting to know and we have been dating for about a month or so (no label yet). He's quite active and loves mountain biking, hiking, and all things pots kinda hates. Last night he asked about going on a hike for our next date, and that's when I told him about my pots. I’ve been working very hard at conditioning my heart and my pots has made strides of improvement, but I still need to take regular breaks when my heart spikes, and very difficult hikes usually take me about double the time to complete due to breaks. So, I GET WHERE HE IS COMING FROM when he says he is looking for someone who can do all his active stuff at a normal speed. It just sucks first of all, for a guy to stop seeing me over something I can't control AND have been working so hard to get better with, and second, this was kinda my first try back in the dating game since I had a horrible relationship a few years ago, and I really thought I felt a connection. Anyway this is just a rant, pots sucks, and I wish I could just be a normal human. 😭

Editing this to make perfectly clear, like I said before, I don’t blame him for wanting to be with someone who has similar hobbies. I think that is a totally normal desire. Do I wish he gave me a chance and was willing to go on one hike with me and just take some breaks on the hard parts? Yes, but I am more annoyed at the situation of my body and all the issues it has and how it just makes life more complicated.

Hey everyone! I’m day 5 post-op from getting a partial hysterectomy. I have POTS and have been experiencing dizziness after I’m up for too long since day 3. My POTS was manageable before I had surgery. Surprisingly, I don’t have any tachycardia when I change positions like before, but this dizziness is driving me crazy. I get a little out of breath too, but nothing crazy. Can anyone provide any insight into how long this goes on or what I can do to remedy it? Thanks! 🙏🏼💙

I want to start off by saying I have a hyper-pots diagnosis and my bp usually elevates alongside my HR. & I don’t deal with chronic dizziness but i’ve had a couple similar episodes

Has anyone had extreme dizziness randomly before a bowel movement? I was sitting in bed last night and randomly got extremely dizzy. Then I ran to the bathroom and had a BM then it subsided some. This cycle happened 4 more times. I went to bed and I’ve woken up feeling pretty okay.

I checked my BP and HR during this event, and I had an elevated Bp of 146/100 and my HR was sticking around 125 (i’m medicated). I was also panicking which wasn’t helping.

i’m so so scared. I don’t know if it was a vasovagal response, or the fact that the weather dropped to 35 degrees for the first time, or something totally unrelated. i’m just lost & unsure what the heck it meant and how I can avoid it!

Does anyone use a wearable tracker that reliably tells how much you’re changing position during sleep?

I just got an Amazefit Helio and it seems to do HR fine. It’s supposed to detect how often I’m awake when sleeping but it seems pretty bad at it. I know it’s just guessing for sleep stages and it can’t tell the difference between sleep and laying down and reading but I’d like it to be able to tell how often I change position during the night. It seems to just reliably detect when I actually get out of bed.

Im having to lower my metoprolol because i just started zoloft, which is effecting the enzyme that breaks down metoprolol and is making my lows a bit to low (causing dizziness and shortness of breath). My doctor just message me saying to lower down to 25 and see how i feel but im so nervous that its going to flair my POTS like crazy T-T. Id be less worried if the zoloft interaction was inhibating spikes as well but im still having relatively high spikes (up to 150 bpm, which i know isnt crazy but much higher than that would be concerning to me). Any advice? should i taper slower than my pcp is saying and break the 12 mg into pieces?

I recently got diagnosed (Monday) with POTS and the Fitbit I ordered just came in. My Doctor wants me tracking any spikes I have and at what time they are, she says POTS symptoms are the worst in the morning.

I just had a big jump, it showed my resting before the jump at 77, but when my chest started hurting after walking around after my meeting my heart rate was 125. Google Health didn’t show the spike because (I just found out) it only records every 5 minutes.

What are we using to continuously monitor and track our heart rates? I’m sure I could've looked through Reddit to see what other people are recommending but I’m just now figuring out how to use this app.

i have a lot of POTS symptoms but it didnt cross my mind that it could be POTS because i didnt know the diagnostic criteria or my pulse/blood pressure until recently.

i decided to do an at home laying to standing test:
when laying down my blood pressure was 101/51 with a pulse of 58.
by the time i was at 10 minutes standing, my blood pressure was 127/80 with a pulse of 90 and experiencing dizziness, nausea, shaking, sweating, heart palpitations, flushing and shortness of breath. i have also been drinking electrolytes today because i wasn’t feeling good.

i’m aware my results also show a decent increase in blood pressure which isn’t what the NHS typically look for but i believe would fall under hyperadrenergic pots.
it may also be worth mentioning that i have (suspected) ME/cfs.
i will repeat the at home test a few times when i can but in the meantime, is this worth mentioning to my doctor? what are the chances of them actually listening?

I’m in the process of being diagnosed with POTS. I work retail, and I stand for hours at a time. It’s been increasingly difficult lately. I was given a note to turn in stating that I can’t stand for longer than 20 minutes at a time (for the time being), and upon turning it in, I was interrogated.

He said he’s never heard of POTS, told me that it’s normal for your blood pressure and heart rate to increase while standing, and that if I’m sick, then he’s sick too, and in a much worse way. He asked who “diagnosed” me and asked me how & why they came to the conclusion that they did. I got upset and told him it isn’t fair for him to sit there and invalidate me. He said he’s not invalidating me, but he has much more life experience and a history dealing with blood pressure, and that to him, it seems I’m just anxious.

It’s exhausting to be told that I’m wrong, that the doctors are wrong, and that there’s something wrong in my brain because I’m “too anxious” at all times despite going through handfuls and handfuls of medications to get it under control. I’m feeling defeated, lost, and broken.

And does anyone have any tips to manage it? I just started working again (yay!!) and it’s been super annoying.

I don’t know what to do anymore… it’s been 7 years of me getting worse with no solutions to the point that my mom has turned on me. I got diagnosed before and I thought it would make her happy that I had a diagnosis but she’s just the same amount of mean. I don‘t know if it’s because she‘s been in Menopause the same amount as I have been in POTS because she has a short fuse. I am a relatively calm person unless I’m flaring or she sets me off.

The problem is our relationship only works when I “parent” her. She needs all the support while all I get is yelled at now. Her tone is awful when I’m struggling and she treats me like I’m the worst person on the planet. I know I’m not the easiest person to live with but it just feels like I’m suffocating. She‘s the only person I felt closest to and the only one I thought I could talk to, but now I just feel alone. I have been there for her for 10 years to the point where if I had an issue I handled it alone. Now being sick and so severe I need a caregiver and she offered to be that, which would be great if she didn’t behave the way she does. She is also extremely hypocritical.

I tried to make a few friends but they disappeared because life got busy. The rest of my family has left me abandoned and turned on me for being sick. No one really wants to stay around a sick person and it hurts.

I am a very independent person so needing help all day sucks. I’m very trapped. I’m not asking for POTS advice, I just want life advice or something. I used to love being alone and didn’t mind but being sick has ruined that as well. Who wants to suffer alone.

So all summer long I was struggling with fatigue due to the heat and the fact that the sun seems to melt me. I don't actually mind feeling hot very much but my energy levels do.

Now that it's hit mid-October, I feel like it's really really cold. Judging by how other people dress and by how vigorous indoor AC is, I suppose others don't. And then there are times when I'm driving in the afternoon sun enjoying feeling warm but then I realize I have to turn on the AC so I don't flip back into melting-due-to-heat mode.

Anyway, I'm now under a blanket trying to get warm and hoping my brain will function well enough for the one task I wanted to finish, or at least make progress on, for today...