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

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?

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

TLDR- medication, building up my upright tolerance with daily walks, electrolytes got me to a place where I could do majority of things. I would still take breaks, but I live pretty normally.

Just want to start this off with saying I am aware the condition affects us all differently, what works for me may not work for you, but there can be some positives for some even when having such a rubbish condition.

My symptoms started exactly one year ago today, to cut a long story short I woke up with leg pain, started having panic attacks and was bed bound. After 3/4 months of more symptoms and my situation worsening I paid to see a cardiologist and ‘passed the test’ with flying colours!

Anyway, I was put on ivabradine which was a game changer for me. Again, this may not work for you but this was a major turning point for me. Once my heart rate was somewhat stable, I started daily walks. I was de conditioned as well as having pots so this was difficult. I aimed for 5 minutes every day, if I couldn’t do the 5 minutes that was ok, but I made it my daily goal. I did 5 minutes every day (maybe 5 days of the week I can’t remember exactly) for 2 weeks, then I would aim for 10 minutes for 2 weeks and so on. Some days this wasn’t possible at all, and that is ok! We will all have set backs at some point. Eventually I was able to start going to the shop that was 3 minutes away from my house, and I could manage around 20/30 minutes shopping. I would then rest for the rest of the day if needed. It got to a point where this wasn’t needed as much, I could finally do longer walks, I could manage being upright for 1/2 hours, would i sit down if needed? Yes! That is one of the most important parts of what helped for me, I did not push through symptoms.

In July I went to a caravan park for the week, it was ridiculously hot in the UK, heat intolerance is one of my worst symptoms. I increased my electrolyte intake, and if I couldn’t do something one day, then I couldn’t. I didn’t let it get me down, because I knew that was what my body needed and there would always be another day. I was able to play golf in 30 degree heat at this point, and I had no flare ups.

I still had better days and worse days, but it was a huge improvement. Another thing I did was stop coming into this group as often, not look up anything to do with pots, and avoid even having conversations about it. This may be a bit more personal to myself as my anxiety was debilitating at one point, and I would avoid doing things because of others stories. If you ever get stuck in that loop, stop looking. You will never know what works for you without trying.

Ironically, I’m currently pregnant and have had to stop my medication, and I feel like absolute shit. But that is what made me realise how much I had improved compared to this time last year.

Again, this is just how things have been for me, I know certain people could attempt a walk and be stuck in bed for months. This post is not me telling anyone to get up and walk, definitely do not attempt something like this if you have something like me/cfs, I’m not a doctor, but my doctors also did not help me so I had to find something that works for me.

There is definitely a lot more, but this post is already long enough lol. Am I/was I in remission? no. My symptoms were still very much there, just not as severe as they once were.

I remember praying to see a post where someone was able to do such simple things when I was first diagnosed, so I hope this is a positive story for anyone who may need it. Feel free to message me if you’d like to as I’ve definitely left out some things!

The interoception is so bad I just genuinely don't notice side effects. Until they are pretty much pointed out to me.

It took me a month to notice that ivabradine was causing me to see halos and light shapes. Only because I randomly saw someone else mention it. Someone else mentioned they were more tired - I was like oh right. This actually happens to me every day too.

I'm about to start propranolol and my doc is like "note down any changes and notice how you feel in general" sir I wouldn't know??? What do you mean and what do I even look out for??

Do you have any advice on how to make it easier for yourself? I think I'm going to create some kind of form I could use any time I start a new med because those are piling up. So that I can adequately judge how I'm feeling and what is happening with me

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 :)

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

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 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 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

I’ve been diagnosed with POTS for a bit now and only recently got recommended by other fellow POTS sufferers about possible vein compression/insufficiency. Low and behold I got an ultrasound in my legs and they found varicose veins, now I’m getting ablation procedure done in a few weeks.

Did it improve your symptoms after the procedure?

After this, i’m going to try and advocate to get screened for may thurner syndrome!!

Anyone experience eczema flares after starting ivabradine. I have always had some random eczema but it’s progressively flaring worse the past few months on ivabradine.
Used to just be dry patches, now they are red and puffy and so irritated

Anyone else with this.??

For anyone on Midodrine, is this normal? I know it raises your blood pressure, but why it so high. I’m also more lightheaded and nauseous on it. I’m confused why my doc prescribed me this when I already have high blood pressure after standing. I get “grey-outs” when I stand up from laying down and than my blood pressure raises to around 135. How does this medication work?

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?

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! 🙏🏼💙

Hi everyone,

I got on guanfacine ER just over two weeks ago and was hoping it would help with my adhd and POTS. However, I’ve had an excessive amount of adrenaline dumps about 1.5 weeks after starting the medication. They have been absolutely brutal. My PCP said it’s clearly not working for me but we both don’t know why. Has this happened to anyone else? Thanks!

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

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.

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!

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.

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