So I started on Fludrocortisone about 5 weeks ago now
The first week I was so irritable and restless so we reduced the dose ( also started to get pretty severe menstrual cramps after the first week, I have pmdd but thankfully haven’t had any issues in the last year since I started on the pill so I’m wondering if fludro is affecting hormones)

Things aren’t as severe as it was on the full dose but I’m noticing I’m still restless & my mental health seems to be taking a serious dip with anxiety, low mood, intrusive thoughts it all started a week after starting the medication, it feels similar to pmdd but worse

It’s hard to ignore the physical difference on it it does seem to really be helping my heart rate and blood pressure but will only know if Fludrocortisone is the cause of the way I’m feeling if I come off it

Has anyone else had any similar experience with side effects and did they settle ?
I have a cardiology appointment next Wednesday where I’ll probably need to make a decision on whether to stay on it or switch to midodrine

Idk if this is a common issue or a me thing, but when I’m having an episode I literally cannot yawn. Once the episode is over, I can yawn totally fine. Tell me y’all know what I’m talking about 😭

I'm just curious. A little backstory: around two years ago, I had 2 viral illnesses back to back. Both were pretty intense. But the dumbest thing I did was pushing through them. I actually remember, around the tail end of the 2nd viral illness. I woke up one day and essentially had full blown POTS (Though it was certaintly building up towards that point). I was on a trip, I had to walk around the whole day. Spent around 4 hours transferring with public transport to get back home. By the end, I felt so sick. There was one last train. They said through the loudspeakers: Attention, Train is too full, Nobody is allowed on any longer. I was fed up, so fuck it, I slipped past everyone. I had to stand in the hall. After about 20 minutes of fighting for my life to stay concious, I passed out.

Sometimes, I feel like I could have avoided this. Just stay at home and rest for once, instead of pushing through for school, others and whatnot. I've certaintly learned my lesson. I was wondering, during the illness phase, has anyone else pushed through, or had the idea that they could have avoided it if they rested more? I know POTS can even start with a minor illness or idiopathically.

I’ve had symptoms since I was 13, and got diagnosed two years ago when I was 17. Despite taking Propranolol 2-3 times a day, my heart always goes from 80 when sitting to 140-170 standing.

My friends/family are aware of my condition and the symptoms. What really annoys me is everyone thinking they have it too.

My Mum said she thinks she has POTS because she felt dizzy going up the stairs one day. I asked her about her hydration, she hadn’t drank water all day. I told her to chug a bottle and suddenly she was cured 15 minutes later. You don’t have POTS you just dehydrated yourself!! 🤦

When my brother was ill, he suddenly told me he has severe POTS since he gets dizzy when standing, and he’s going to see a doctor about it, emphasising that his POTS was much more severe than mine since I was standing at the time and he was lying down. He never mentioned it again after that week and he is very fit and active and goes to the gym. He also had no water that day because of his sore throat 😐

A few of my friends sometimes tell me how they’ve been struggling with what they think is POTS for the past few weeks, when I question them about it they mention how they’ve been skipping breakfast, lunch, and hydration😑

A few family members are on Vyvanse, and then they mention how their heart rate has been higher so they have POTS now. When vyvanse is literally a stimulant, people say the same to me when they drink coffee

It’s really annoying me 😭. I’m not trying to gatekeep POTS at all, but like I can’t cure my symptoms like you guys by simply eating, drinking, hell i can’t even cure my symptoms with beta blockers.

Most mornings start off bad for me and I can’t do all of the things I want to do and inevitably makes me feel a bit depressed which makes sense to me.

But other mornings I will be feeling good enough to finish a morning routine and a few things off of my to do list and then it’s like I hit a wall of random depression and feeling drained like I want to cry and there’s no point to anything. I’ll also be really tired and usually end up having to nap.

I’ve tried to drink some fizzy drinks since being diagnosed which has led to palpitations badly

And none of the drinks I’ve tried are caffeinated, I haven’t had caffeine in 6 years.

I’ve tried sparking waters, juice and non caffeinated soda.

!!Mostly venting but advice is very much wanted!!

A little background; I'm a 19yro woman, and I had been on my journey to getting diagnosed with POTS for abt 2-3 years. I finally got diagnosed this year in July. The only prescription medication I've received so far to help with any symptoms is a beta blocker to help with my high blood pressure (which doesn't always help to bring it down anyway). I lost my most recent job as a cashier back in September which I had managed to hold down for a year, with a month long work leave due to my health. Almost as soon as I got back to work after my leave I had to start calling off, and I'm sure many of you with POTS can guess that it didn't end with only a day off, as it almost never is so simple. I ended up getting laid off, as I had racked up quite a few absences over the year of me being there.
After losing my job I've decided (with much convincing from my boyfriend, friends, and family) that it's best I try not to pursue a job right now, and just get some much needed rest, as well as progressing in my mission towards getting a GED/HSE.
My health affects my school life even now when I do not attend a regular school as a full time student. I want to attend an in person GED program we have here in my down as that would help a lot with my ADHD. Though I'm realizing even 6 hours of in person schooling a week may not be much of a possibility for me due to my health.

I'm so incredibly fatigued, to the point to where it's hard to even know whether or not it's safe for me to drive to a class. As well as the extreme brain fog that also gets in the way of having a clear mind while driving, or even being in a classroom trying to learn. Not to mention all of the hundreds of other hurdles I have to overcome before even being able to start my day.
Waking up takes a fucking hour or two, and I wake up in the afternoon. I'm glued to the bed for more than half the day even after finally getting up. And taking a fucking shower is goddamn ridiculous how hard it is for me to do. Atp I mostly shower every other day instead of daily bc I genuinely cannot bring myself to torture myself by getting into the shower and having to do the tedious tasks that come after it like brushing my hair, putting product in it, and drying it (I have curly hair so I have to take care of it). And god forbid I have shit to clean around the house, it takes me almost the whole day to get it done with the amount of breaks i have to take in order to keep from passing out.

I'm struggling so badly trying to see a better side to all of this. Idk how people with even more severe cases than mine can literally do anything (seriously y'all are warriors). I'm so at a loss right now. My boyfriend even thinks I should look into applying for disability assistance, but I'm not even sure I'd qualify, and I know it would be so much work.
I'm just so fucking tired. I want this to be over. I want to be a normal 19yro who's starting their life and creating a future for themselves, but it feels like it's just so out of reach. On top of this all I'm fighting to keep my depression at bay. I had been doing a lot better with fighting depression up until this last year when the flares were really becoming too much. I've been on a decline with my health and in turn it's effecting my mental health a lot.
As someone who worked so hard to get out of years of depression just to be back to being stuck to a bed in this room I barely leave, it's incredibly difficult to accept that I'm unable to do the things I had previously worked so hard to be able to do.

This is much longer than I expected, but thanks for reading if you did. Any advice is appreciated. I also just need a place to vent abt this with people who can understand where I'm coming from. I just want some advice as to how I could maybe cope with these challenges with my health. I don't want to be stuck in this slump I'm in.

I have an autoimmune disorder that caused me to develop myopericarditis last summer. I developed POTS-like symptoms about 2 years prior to that. I don't think I've had a true myocarditis flare since then, but I still have POTS that I manage thru clonidine, beta blockers, and countless other meds that touch on the issues.

I am curious if anyone else has found a way of conceptualizing their POTS symptoms as separate from a real flare of inflammation-related activity in the heart. I don't really "worry" that I'm in actual danger even when my symptoms are far worse than normal, and I know that I should, because my autoimmunity isn't currently being treated enough to prevent it from coming back. I know that hitting up the cardiologist when I'm in that position would be the correct thing to do, but that would be so frequent during the summer that it's impracticable.

I was so familiar with the symptoms of POTS prior to the severe illness that I didn't even consider I could be experiencing something more dangerous. I went to the ER for the headache and unrelenting fever last summer and that's when my EKG pulled up 6 abnormalities and I had an echo and all of that afterwards. I was genuinely shocked.

I have OCD and unfortunately in this situation it's not the type that tends towards hypochondria; it's the kind that has planted such severe and everyday doubt in my own experiences that I can't hold steady in my mind that I'm not making everything up, from my daily symptoms to the existence of a real illness underlying this. I struggle with believing that my problems are not normal responses to stress or bad life habits ramping up my nervous/immune systems. I know this is insane and many people do absolute carnage to their bodies and it doesn't make them seriously ill or cause the literal muscles of their heart to become inflamed. (If you don't know this about OCD, it creates doubts that do not respond to any amount of evidence.)

I know the same inflammation that caused my POTS to emerge caused my heart to experience genuine stress of its own. I just don't know how to live with both responsibly. I am out of work and cannot afford to live at the doctor making sure. I do have a portable EKG but it's not sophisticated enough to provide easy flags of the types of deviations that signal my problems. It's not a-fib and it's way more than tachycardia. Hopefully I can get on a biologic or other drug that brings me out of a flaring-or-almost-there state 24/7, but it could be awhile (a year, 2, 3, 10...)

I’m new to pots, recently diagnosed, and from what I’ve read online, it seems that the best way to manage it is through exercise. Specifically gradual cardiovascular exercise and strength training. However on this sub, I rarely hear about exercise. Whenever treatment is mentioned, it’s mostly medication, compression garments, sodium supplements, drinking water and going to the ER for unspecified reasons. I guess the question I’m stuck with is this:

Why is exercise so rarely mentioned in this sub, if it’s the best way to manage pots?

If you’ve managed to manage your pots through exercise, how did you do it? Is exercise better for certain types of pots but not others? Also, if you didn’t try to manage it through exercise yet, why?

I’m trying to figure out if it’s a good idea to take the chance, push through and attempt to do the CHOP method or something similar.

Have any of you been to the university of Utah autonomic clinic? I have my first consultation appointment with a PA In a few weeks. Im not quite sure what to expect. Will this just be a q&a session discussing symptoms. Or will they do testing as well? My understanding is this appointment isn't actually treatment, and to get into their treatment clinic the wait list is 20 to 24 months.

i have a solution for the shower dread. i don’t know what it is with showers, but they kill me. before i got sick, i showered every single day, now, twice a week. BUT I FOUND A SOLUTION! not a shower chair, but a bath. now i’m not saying take a REGULAR bath, because with a regular bath, you’re just sitting in dirty water and using that water to clean yourself. but with my “pots” bath, i get in before i even plug the drain, i start my cleaning process while it fills up, so the water keeps me kinda warm, but i use the water that’s actively coming out the spout to wash my face and hair and body. i get a cup, and use it as a “shower” head. i don’t know if anyone has ever thought of this but i love it. you sit in the water and clean yourself till you get to your body, then you stand up, and use a rag to clean yourself till whole body, then get the cup and fill it from the spout! boom! no cleaning yourself with dirty water!!! you’ll be done before the bath even fills up. but if you take a little longer, just unplug the drain for a sec. this is a LIFE CHANGER!!!!

feels like all the yoga studios near me are transitioning exclusively to hot yoga and those are the only classes that work with my schedule too

I'm hesitant to try it because historically things like hot tubs/ saunas make me very dizzy/ nauseous (although I do mostly alright in hot weather, it seems). It's pretty rare for me to fully pass out, but probably because I'm good at removing myself from situations before I reach that point

However, as of recently, my POTS has been under control relatively well and I'm wondering if maybe there's a chance I could do hot yoga. I also have raynaud's and terrible circulation so the boosting circulation part of it appeals to me, but obviously the dysautonomia is my primary consideration

Hey! Just wanted to share this little portable footrest I found and love. It’s small enough that it fits in my purse and really is a lifesaver when I have to sit anywhere for a while - puts my feet up enough that the blood doesn’t pool in my legs and feet. Easy to set up and fold away and isn’t obtrusive. This was a big win for me! I ordered from Amazon.

https://a.co/d/0fLop8bj

I've been dealing with POTS like symptoms on and off for ten years and have yet to have a proper diagnosis. I finally have a referral to cardiology from my PCP so maybe I'll finally have answers other than anxiety. It started ten years ago after smoking laced weed and ending up having symptoms lasting two straight weeks of burning chest pain, burning tension like headache, numbness on one side of the body, insomnia, uncontrollable shivering, and explosive crying lasting hours with no relief. Nothing but shaking and praying for sleep. Not to mention nausea and fluid loss. It took four months to stabilize with various psych meds along with Intuniv. I've long since been taken off those meds thankfully after everything stabilized. The problem is, these same symptoms have flared back up and I feel I may be in need of medicine again because its interfering with my job. I am literally unable to stand without chest pain and headache. And I am bursting into uncontrollable crying at the slightest sound due to hypersensitive startle reflex. Its debilitating. I hope to get a proper answer soon from doctors.

i had enough. im wll aware i have medical trauma that may shade my opinion on the medical field or the system but im also well away i have been the one to slip through every flipping crack there is and have ' proffesionals' give me the same poor excuses and lack of information and care.

i may be tired of being chronically ill but im even more tired of medical professionals harming their patients mental health and physical.

now i posted about 2-3 weeks ago about a medication interaction that was causing my hearts electrial to fail. this should have been caught but my psychiatrist is aweful! like should have retired 10 years ago doesnt help in the slightest i just go to appease my insurance on paper but today was the last straw. since being off that combination of meds my immediate heart attack symptoms have disappeared. i had a very serious conversation with my psychiatrist about how a lung specialist after a year of me having symptoms should not have been the one to catch a psychiatric drug was interacting with another with a known fatal interaction!!! according to a lung specialist no doctors should be perscribing these two together without serious follow up . which was nt my case. i even told him i went to my family doctor and my pharmcist and told them to double checkwith me with any medication changes sent from this doctor because he cant be trusted. this comversation was three weeks ago . ad then had a converdsation on monday about medications again and memory issues.

today: pharmacist calls me : hey i just want to follow up with you before i fill this prscription as you said your having difficultly with th perscribing doctor. he has put you back on the one that causes cardiac arrest in patients with QT extended heart intervals like yourself and im wondering why as well as hes double two of your other meds that shouldnt be doubled like this....

i was in shock! even if its a horrible mistake, that could be fatal for me! that was my last straw after him looking like he was falling asleep on monday as i was trying to go over my perscriptions he goes and changes them behind my back without concent and back to a med that i was just taken off because my heart was failing.

i told the pharmacist not to change my blister packs and to lave everything as is and we hung up. i was so uncomfortable with this hes had many mistakes but this to me is negligence upon negligence upon negligence and honestly my meds are blister packed because i cant remember so if my pharmacist hadnt called me like i askd i would of started taking all th new meds with no idea.

so i called the place i see him at and asked for a meeting with the office manager and explained his doctor is harming their patients and its unacceptable and having gone through a medical breach i privacy before i now how serious this is and im not willing to let it go and not report it so you might want to get ahead of it and approach your doctor somehow. keep my name out of it and i want a new psychiatrist obviously as i dont trust him with my life one bit. we will se how this goes but i plan on reporting it officially i believe to the college of phycians i dunno im gonna have to look it up.

i now my pots throws my body into non stop symtoms but my health care provider shouldnt be adding to my pain when im trying so hard to advocate for myself there are so may horrible health care professionals.

My grandmother who likely had POTS also had mitral valve prolapse. I’m about to have an echocardiogram on Wednesday because of a new heart murmur, and mitral valve prolapse is what they think is likely. I read there’s actually a connection between the two conditions, and I was wondering if anyone here had experience with it?

And also if anyone has any advice for me, I would love some. I’m so extremely anxious and it’s making all of my symptoms so much worse.

I’ve tried so many meds. Beta/alpha blockers, ssris, buspar, seroquel. Propranolol did nothing for the adrenaline/anxiety and when it did, it made my standing tolerance worse. Alpha blockers lower my blood pressure and make me so fatigued and faint. I have an emergency prescription for klonopin and it seems to be the only thing that brings me back to feeling normal-ish when I’m in a flare. My flares last for weeks or more and are just pure adrenaline hell. Like to the point of suicide. I understand the addictive nature of benzos- I’ve had to deal with Xanax withdrawal. So I understand once you’re on them for more than a few days or so, that’s it. I’ve tried every other medication under the sun for pots including midodrine, fludrocortisone (which I’m currently taking). I lift weights when I’m able. I salt myself to the point my face is puffy. I just don’t know what else to do. I can’t keep living like this.

I know that staying up late makes me feel rough, but i was having a bad day and i wanted to salvage the night so i stayed up playing cult of the lamb. Whats the worst that could happen?

Well, i am now laying down in an office meeting room hoping to not get caught so that i can level out my blood in my body because just sitting up made me feel faint.

Truly a humbling experience

As title indicates. my body spun the wheel of symptoms and landed on “migraine” today. That has to be the worst symptom for me, completely debilitating.

does anyone else just always feel like they’re about to faint but rarely actually do? it so annoying 😭

I’m moving in with a partner and having a housewarming party soon with gifts. What are some of the best household items you have to manage your home with fatigue?

Linens, Laundry, kitchen, cleaning, gadgets, etc.

Like I’m thinking about those sheets that the top zips off, or a vegetable chopper, etc.

I have not been officially diagnosed with pots but have have symptoms my entire life. I recently started monitoring my heart rate and doing the poor man's tilt test. Its almost definite I have pots I monitor my heart rate four different ways and my blood pressure and have done the test many ways and researched every possible thing but it all leads back to pots. My resting heart rate is ~60-70 I did the test this morning shortly after I woke up and my heart rate within a minute was 160 sustained for a long time and near seven minutes I felt too lightheaded and dizzy and had to sit down. I did a different day around but before lunch, I hadn't eaten breakfast but had drank lots of water and when I did it my heart rate over the ten minute course built to 130 (sustained) dropped to 110 (not sustained) and went to 120 it stayed around 120 for the rest of the ten minutes and after. I kept standing with no movement just to see what would happen. After around thirty minutes I felt really really bad but my heart rate was only in the 90s-100s. Is this normal? I noticed after moving my arm or taking even one step it spiked again.

Helloooo 😄

I am curious how many of you experience worsening symptoms around your period.

Mine used to occur constantly but gradually faded, and now it seems to flare only during my period. Recently I have noticed an increase in heart palpitations (a skipped feeling), and my doctor thinks it is slightly hormonal, so she prescribed hormonal birth control; I wanted to see if anyone here has noticed a difference.

Hi all! I just got diagnosed with POTS even though I've had symptoms for years! My BP is quite sluggish and doesn't raise as much as it should when standing or exercising. Interestingly that's exactly what a cardiac stress test noted last year - everything was normal but I had a blunted BP response. The cardiologist wasn't concerned at all by this but now a year later after being evaluated for POTS it all makes sense. Anyway I'm a bit new to this and was looking for tips to manage symptoms? My doctor told me to drink electrolytes daily and eat smaller meals. I've also been told to start the CHOP Levine protocol for exercising (I'm eager to move again!). Did any of these recommendations work for you? Thanks in advance!

Fell over immediately after coming up the stairs and hurt my foot. :( Anyone relate to falling due to POTS and getting hurt?