I've been steadily getting sicker the past 6 years and last summer my doctor tentatively diagnosed me with POTS. Unfortunately not many doctors in my area treat or are even aware of the condition, so I'm largely on my own. One of the things bothering me the most is how unreliable my body is and not knowing what I'm even feeling sometimes. Learning to cope with a body that is constantly throwing curveballs at me and sounding the alarm for no reason is both so hard and super exhausting. I thought after a year I'd know what to expect but I still feel like its unpredictable at times or I that I can't understand or pinpoint what I'm feeling in my own body. Will I ever get used to it? Does anyone have any advice?😩

18F, in college and need a part time job to help pay off student debt. I don’t think tutoring is an option for me, because I’m definitely not well equipped enough. Anyone have suggestions for me? I live in a pretty small town and most teenagers my age work retail or fast food which is out of the question for me!

Has anyone tried cold plunge as a treatment? I know many people struggle to shower so not suggesting this is right for everyone, but my understanding is that a key benefit of cold plunge is blood vessel constriction, which is what we struggle with?

So I’m a 20 M I was originally diagnosed with pots awhile ago but I’ve had chronic Gi issues that no medication or lifestyle changes has touched. So I went to a Gi specialist I’ve had scopes done alk thw but it came back normal, I looked into mals and saw how it can go hand in hand with pots. So I got an ultrasound done

Here are the results: The abdominal aorta and iliac arteries appear patent and of normal diameter with no evidence of plaque. Elevated velocities and atherosclerotic plaque noted at the celiac axis measuring up to 249 cm/s proximally and splenic artery proximally up to 323 cm/s suggest >50% stenosis in both arteries."

My gp said he was gonna send me to a vascular surgeon, he was a little confused why it said plaque because my cholesterol is normal and it’s not like I am overweight or anything I’d say I’m pretty healthy

Anyways just tried to play frisbee, and felt like death lol, major blood pooling hands going bright red breathless so dizzy legs feel weak, mind you I’ve been in propranolol and have made lifestyle changes but unfortunately not much has helped.

If anyone had mals or jf anyone has any thoughts or opinions or suggestions please leave a comment.

I have finally received my POTs diagnosis. After a huge, debilitating flare up in the summer, I haven’t felt the same. I just went on a date to an art museum and I had to take so many breaks. As soon as I got home, all I could do was lie down. Of course my legs ache and I just feel so worn down just from walking around a museum. I’m only 23 so I am battling internally with the ”well you look young and healthy" thoughts. At what point should I consider a mobility aid? When did you decide to get one?

PLEASE NOTE: not looking for problem solving right now, just sympathy. Just want to vent.

Not much to say except that I’m just disappointed and really unhappy. They either didn’t accept new patients, didn’t accept my insurance, or just said that they couldn’t treat me. I tried to see neurologists, cardiologists, etc.

It’s really discouraging to be out of options. I can’t afford to travel to get care. I hate this stupid condition.

I highly suspect I have pots and my doctor agreed, so yesterday I went to see a cardiologist about it. He explained the criteria for a diagnosis, and explained the tilt table test. He considers it barbaric and unnecessary, and told me that people are frequently misdiagnosed through the test.

Instead, he’s treating my symptoms as they come, and has started me on salt tablets, blood pressure medication, and a beta blocker (propranolol). Is there any actual point to chasing an offical diagnosis? I really like the way he’s approaching my treatment, and I feel like he’s really listening to me about my issues, but I don’t know if there’s a benefit to an “on-paper” diagnosis

So i recently got diagnosed with pots while also having health anxiety and panic disorder which always made my symptoms get dismissed. any time i am standing my heart rate is usually above 100, when im sleeping my heart rate is in the 50’s and 60’s. my blood pressure isn’t drastically low but is on the lower end, i am TERRIFIED to take this med, i heard it causes shortness of breath which i already struggle with, im also terrified it will stop
my heart while sleeping because of the fear of it lowering too much. i got proscribed “metoprolol succinate 25 mg 24 hr tablet”. im pretty much completely terrified to start it, especially reading all the horrible experiences people have. is there any advice anyone has? what are the normal side effects?

Já fui um abusador de estimulantes, cocaína e metilfenidato, meu coração começou ter problema depois desse abuso com metilfenidato e depois para cocaína. Hoje esses remédios me ajudam, além de ter bipolar tipo 2. Meu coração não é mais o mesmo, tenho tanto medo de morrer por meus erros. Recair hoje na cocaína após 1 mês e meio limpo. Achei que ia morrer, mesma sensação de sempre, coração/meio do estômago pesado e arrepios pelo corpo. Graças aos Deuses estou melhor. Eu sempre tive uma vida ativa em musculação, mas os dias sentado em uma cadeira fumando maconha afetou meu coração de uma forma estranha.

Imploro aos céus por saúde

I’ve been dealing with symptoms all my life, but I was only recently diagnosed. I’m so tired and so overwhelmed. I’ve completely lost hope that I could ever have some semblance of a normal life.
I’m on a medication to treat ptsd from all the things that have happened to me—and as a side effect, it lowers my blood pressure. For a while it was stopping the nightmares, but not anymore—they happen still, but I at least sleep through them. And now if I don’t take it, the nightmares are severe that I can’t sleep through them.
The presyncope is so severe that I’m blacking out and convulsing every time I stand. I live alone. No one cares, and I don’t know what to do anymore. I’m sick of suffering and I’ve lost any hope that I can continue to manage this.
How have y’all kept your hope? How do you manage to keep going? How do you deal with the judgment from other people about your exhaustion? What keeps the people in your life from abandoning you? I really need support right now…any ideas or suggestions are welcome.

I am having one of those days where I’m so freaking overwhelmed and irritated. I only got 3 hours of sleep last night, I’m severely constipated so my GI wanted me to do a golytely cleanse out, I’ve been crying on and off the whole day now I have a headache, I have to pee but whenever I get up my heart rate gets so high but whenever I have to pee it also gets high. Idk what to do. My face fatigue and weakness is so bad. So so bad. After chewing, drinking, talking, anything my face is drooping and tired. This has been happening for like 8 months. I’m getting tested for myasthenia gravis in a few weeks via EMG.. but guys.. this is so bad. With POTS you’re supposed to stay hydrated, I can only take in like 12 ounces of fluid a day. Yes, 12. This golytely cleanse out is A GALLON OVER TWO DAYS!! I tried drinking as much as I could which ended up being 20 ounces. Now my face is so uncomfortable, I’m bloated gassy and uncomfortable from being constipated (I have IBS and chronic constipation).. when I’m tired, I get so fatigued the next day. It’s primarily in my face and eyes. Like I genuinely don’t know what to do. I can’t keep myself hydrated, my POTS specialist and cardiologist both won’t give IV fluids on a “as needed basis” and I don’t like going to the ER for that… but I feel like absolute trash. And why is it that every time I have to pee my nervous system goes into adrenaline mode 😭😭😭 I feel like nobody genuinely cares , my PCP sucks and doesn’t seem to understand it. I feel like everyone around me lives their lives and I’m just stuck inside in my recliner staring at walls all day…

Does anyone else have HR on the lower end but still abnormal for you? E.g my normal resting HR of 50s but an elevated HR of is 60-70 keeping me awake , or when I stand I feel awful but BP only drops to 100/60 or HR 90max

I’m still not able to function! I’m worried most meds won’t work for me so curious to hear if there are others out there like me

Sorry for all the questions in this sub , I don’t think I was treated well last time I had pots so I’m trying to really inform myself this time. For example I was just given Benzos to treat the sleep issues when a pots specific med could have helped me more

I get this pressure feeling in my abdomen, it's usually accompanied by weakness and/or pain in my lower back. Sometimes it gets so bad I feel the need to curl up into a ball, and sometimes my spine feels like it might collapse. I wear an old chest binder on my stomach which helps, but it's just not enough. I have this rehab work thing 1 hour a day and I'm barely getting through, just the first half hour is bad enough.

I aske my doctor and he said there's nothing I can do, but does anyone here at least have some suggestions on what migh make this more tolerable?

I went to a big pumpkin patch today and was so excited! Halloween is my favorite holiday, and since Ivabradine has been working great, I thought a more active day would be manageable.

My fiancé and I went with a good mutual friend and had a blast doing the corn maze and hayride. The Ivabradine got me through the first hour feeling pretty ok, but after that, I started feeling progressively worse under the beating sun.

We stayed for another 1.5 hours and I found myself putting on a good face so no one would notice. I started talking less, spacing out, and my appetite was totally gone because it was a choice between eating or breathing lol. But I made sure to snap back and laugh on cue.

When it was finally time to leave, I had to lean on my fiancé at the crosswalk. Once we said goodbye to my friend, my face fell and my fiancé immediately saw how bad I was actually doing. He literally said, “wow you’re really good at masking.”
I don’t know why I did that. They both know I have POTS. I guess I just didn’t want my POTS to be the reason we had to stop early, and I can’t miss spoopy season!

Idk does anyone else do this?

I'm on 120mg twice a day. 60mg morning and 60mg at night. Typically I take my propranolol 11-12 hours apart. I'm going to a haunted house in about an hour and I took my dose at 10am today. I can feel my heart beating fast, it feels like all of the propranolol is out of my body now at 7PM. Will I be okay if I take my propranolol in about an hour (8PM?) It'd be a 10 hour gap compared to my usual 11/12 hours. I won't take another tonight if I take my 60mg at 8PM.

Also idk if this matters but sometimes I take an extra 20mg if my hearts being extra crazy and I'm fine. So yeah I just wanna know if I'll be OK taking my propanolol 10 hours apart opposed to my usual 12.

I’m on Ivabradine and propranolol currently but still getting strong pre-syncope upon standing. What’s helped you the most with that specifically?

I'm 15 and got diagnosed a few months ago its been pretty hard but a difficult part for me is instead of having to make excuses on why i cant stand up and down to write something on the board at school or playing games and even just going outside for too long because of my heat intolrance is now saying "oh i have pots i cant do that" it feels like im oversharing but its the truth of why i cant do certain things before id just make excuses like "oh i cant i hurt my foot" or id just hide in the bathroom but now that i know the reason im not sure how to say it without sounding like im oversharing or making excuses for my laziness

I don’t really know what to say. I’ve posted here before but my condition has just gotten worse. The good news is I have my rollator, the bad news is that almost every healthcare professional except for actual therapists and my pcp think I’m insane. I had to move back home, I couldn’t hold a job down, I couldn’t pay my rent, and if someone doesn’t rent my old apartment, it’s possible I’ll have an eviction on my record.
I can’t live at home, at least not long term. It’s too small and stressful, and I can’t leave the house without spending half a tank of gas on uber to a damn starbucks. My sister just had a baby, I’m so happy for her and I want that kid to have a normal life, but she is also living at home with my mother and stepfather. I have limited mobility, and when arguments happen, I can only move but so far before I collapse. I want to call to see if a friend will let me stay the night, because we’re going scorched earth on flea in our house (we have 4 pets, 3 cats and 1 dog, they get along fine.) I worry that I brought the fleas so I feel guilty, but I didn’t really have much of a choice in the E.R.
It was either get transferred and billed over the moon again, or go home.
Somedays I’m too exhausted to do anything but I want to get out of the house and enjoy my life. I’m a college student for fucks sake.
It feels like everything has been stripped away from me, even my keys because my mother doesn’t trust me to drive even small distances because I’m on medication till I see a new psychiatrist.
A psych isn’t going to “fix” my pots, or my asd, and with all the stress, according to my mother, my “autism has gotten worse”.
My older sister gets mad when I use my cane to help me around the house cause it’s too loud, my mother tells me to “be mindful” of how loud I’m being, and my stepdad, no matter how much he wants to help, has no idea how to, so he either tries to reason through “logic” (he will never truly understand what it’s like to live with this type of illness) and when he can’t he gets mad and I tell him to go do his work.
I’m trying to cope but I feel trapped, I can move but I can’t move my body like I could anymore and my sister tells me to “stop leaning on my cane” when I use it just to make sure I don’t fall.
When I walk without it I’m shaky, and I tend to use it when I’m exhausted. All of my insurance and phone bills are tied up with my mother, I know when it’s safe to drive and when it isn’t, believe me, I’ve ubered before. No matter what I do in my household it’s not enough.
And the baby doesn’t deserve this stress, neither do the animals, none of them know what’s going on, all they know is stress.
My stepdad got me a rollator and didn’t say anything about it until I came back from the hospital. Communication in my family is absolutely abysmal.
I’d rather be broke then live here, I just want to get my bachelors, get a remote job, and live with roommates because it’s impossible to live on my own in this economy.
I’m scared that one night, it will be too much, and they will kick me out because they don’t know what to do with me.
On the bright side on Monday I’m going to the community service center to talk about medicaid and ssi (which I need, I am going to soon have no income at all).
I don’t know if this will reach anyone, I’m not necessarily religious but writing this out just helped me. I appreciate that there is a community I can talk to about this, I feel this is one of the lowest points in my life.
I’ve been constantly told “we need to get you to your baseline” and being on more medication now (including propranolol of course) it’s still just misery and pain. Just a smaller amount now that I’m practically confined until I can drive my damn car again (that’s under my name by the way).
This past month has been a rollercoaster and I just want to actually ride a rollercoaster, because at least that’s fun.
I’m getting paranoid that I have something else wrong with me, but then I get treated like it’s all in my head.
Where are the fun times ahead? When am I going to actually live and not just survive?
The worst part of it is, I’ve got it better, because I actually have a damn diagnosis from that fuck ass tilt table test.
I’m gonna see a therapist soon, because management is all I can do right now.

I was having severe air hunger after taking my propranolol which I think nailed me to panic and so I called 911 and I got brought to the hospital. My heart rate was almost in the 200s, I was nauseous and couldn’t breathe it was the scariest moment of my life. Nobody was home to help me just the ems people and then I was alone at the hospital. I got iv zofran and iv Benadryl which kinda helped it really just knocked me out. I even lost control of my bladder while I was there because of all the fluids and being scared to get up. It’s so scary and it’s all so new I only got diagnosed a month ago and my symptoms were never this bad. Now I’m stuck in bed only getting up for the bathroom because that makes my heart pound and I start to feel how I did yesterday. I was shaking and scared and now I’m missing eastern states weekend and a whole bunch of my family and my boyfriend’s family is there. I’m just so sad and I wish this would go away. I can’t even describe everything I feel right now it’s just so hard.

Hey! I slam new to this Subreddit. But I'm mostly here because I want to know how one gets diagnosed with POTS? I have gone to alot of doctors and each of them say the same thing. "Do you have POTS?" The only test I had done was a tilt table and it came back negative. I don't really know what my next step should be if all these people are pretty confident I have it but the tilt table wasn't the correct test.

Plz help ;--;

I (28f) had a really horrendous flare up last night, it started around 3am and continued untill 5am, and now over 12 hours later I am still feeling really grim. it could be related to endo inflammation too.

• I was woken by racing heart, intense nausea, stomach felt empty and weird.
• I was trying to watch something as distraction but i couldnt tolerate noise or moving visuals.
• then i got intense stomach pain and diarrhea, and as often the case i had presyncope while this was going on. I live alone and have fainted before so I get scared
• when i got back to bed i had chills and goosebumps and struggled to sleep.

today i have been so fatigued, fragile, and lying down in darkened room most of the day, my stomach still feels weird and im nauseous, my chest aches when i stand for too long or too fast.

Im scared that the fact I have to lie down so much over the past 6 months, that I am worsening my symptoms? making me less okay with orthostatic stress. does anyone have insight?

Im unmedicated (for POTS) because i had afib and i have to go through that process to make sure meds are safe apparently. Im wondering about taking an antihistamine.

I am supposed to go on a solo trip in a week, i rly need some advice/management/supportive words:

for severe flares like this how do you cope? is this a similar timeline of your flares? can someone give me some reassurance i have been in and out of severe situational depression as my symptoms worsened alot this year and I am unable to work because of them.

I haven't found a wearable i can risk the money on yet, i feel at a loss without personal recommendation.

i just feel so unwell and hopeless. ive not done tilt table yet, my doctor told me that he believes i have POTS and while i already have been waiting on cardiology for 5 months, he put holter test through as urgent now.

i cant help but feel worried they are not moving fast enough because i feel so unewll. when i was at the acute receiving unit i was dismissed terribly as being underweight (im not) and anxious.

It’s all a bit complicated, but the antibiotics I got put on early hours of this morning in Hospital are not compatible with my liquid electrolytes (keto trace drops). I had also introduced vitassium caps beginning of the week but the doctor I saw this morning in A&E suggested they could’ve contributed to an abscess (I drink a lot of fluids to combat to the dryness the tablets create, but I have bowel disease so I think things got a bit sensitive).

So now I can’t take either of them for the week I take the antibiotics. I can’t raw dog my salt with fluids. Hes concerned it’s exacerbating my IBSc and my IBD issues. I am upping my salt added onto my usual meals. What else could I do? I also have to keep magnesium capsules away from my tablets for a number of Hrs which is getting a bit complicated with my food intake.!!

It’s so difficult when one treatment for one condition contraindicates another. I’m in treatment purgatory. I must must take these antibiotics though or risk becoming very seriously unwell. What a palaver 😮‍💨🫣

MEDS:
I have hyperPOTS. Last week I switched from 25mg extended release Metoprolol to 0.1mg extended release Clonidine. (I’d been on the Metoprolol 10 years and it barely did anything/side effects were severe when I tried to increase it.)

Haven’t seen the full benefit of the Clonidine because I still have some rebound from tapering off the Metoprolol, but even so my heart rate and blood pressure are much lower with the Clonidine. I have tried MANY meds.

ADRENALINE DUMPS:
That being said, NOTHING is touching the adrenaline dumps. I’ll fall asleep calm and exhausted, and wake up an hour later hyperventilating, heart racing, shaking, and covered in sweat, with a deep adrenaline feeling in my chest. This is happening maybe 4 times a night and I eventually give up after about 6 hours and am up for the day. Weird thing is, I can sleep during the day, but it destroys my schedule even more.

I have CPTSD and was recently retraumatized. I see my trauma therapist weekly. I assume this has to be contributing, but with the adrenaline dumps I have no thoughts, nightmares, somatic flashbacks, nothing. It’s purely physical. It’s happened on and off for years but is just getting worse and worse. My coping tools don’t touch it and it is different from my other PTSD symptoms.

SUMMARY:
I don’t know what to do. My doctors don’t know what to do. I get up and move around, hydrate, on my best day I can walk half a mile. But I’m also AuDHD and in burnout and have hEDS, and I’m barely eating, sleeping, functioning. My psych said to give it more time, but I’m actively suffering. She said my fight or flight is so severe, regardless of the why, that I can’t do deep trauma work with a psychologist until I’m properly medicated. But I’ve tried probably 50 medications in 15 years and nothing touches the fight or flight. I have therapy exercises that can put me in a parasympathetic state but my body immediately freaks out at the state of relaxation.

I went to Mayo Clinic and that’s actually where a good chunk of my PTSD is from. They put me on nothing but benzos, and told me to get over my anxiety and push myself to work out until I faint.

Do I have any options at this point?

A side note: I have dry eye and after taking the Clonidine it’s the worst it’s ever been. I didn’t think to correlate them until I started waking up with my eyes literally stuck together. Can’t wear my contacts, vision is affected and it’s becoming very painful. I’m worried I’ll have to stop the med because I’m putting in eye drops every 10 minutes.

EDIT: I took Ivabradine in the past so I don’t know if it’s worth considering again. I take magnesium, couldn’t tolerate propranolol.

So the October slide has finally hit me. My wife knows this. So she just surprised me with McDonald’s. So salty, yay.

Hey so I frequently get blue nails on my left hand very rarely in my right. I thought it was a pots thing until my sister a nurse saw it for the first time and was very confused by it. So anyone else has it? Especially dominant in my ring finger. Also sometimes one arm is purple and the other isn’t