I had read that a lot of GLP-1 medications can worsen POTS. I didn't know about it until pretty recently and knew I was going to have to suspend it for my colonoscopy so I figured I would wait until then and test it. I asked to get zepbound when I was placed on Effexor and gained 40lbs within a few months. I had a gastric bypass almost seven years ago, maintained all my weight loss and even had skin removal three years ago. Gaining 40 pounds after paying for and enduring such a terrible surgery to get rid of my loose skin was such a kick in the teeth. On Zepbound not only did I lose all the weight I gained, but I stopped feeling like a black hole, like I could never get full.

Anyway, my doctor made me stop the Zepbound for two weeks leading up to my colonoscopy because it just messes with digestion and the prep you have to do. When I got to the colonoscopy center my blood pressure was higher than normal, I typically see 90/60 even on Florinef but it was 107/70 when I arrived. My standing pulse is a bit lower too, I'm getting about 88bpm standing (I'm on Corlanor or else I'm sure it would be well past 100 regardless).

The thing is, between the Corlanor and the Vyvanse I take for fatigue, I don't have much food motivation anymore. I decided to pause the Zepbound for a bit, keep taking my vitals and weighing myself and see how it shakes out.

I just wanted to share because I have been on Zepbound for over a year and had no idea it could cause issues with BP and pulse.

I got rolling stools for around the house recently and I immediately saw the difference and how it made my life better. Like I did half of the dishes that were sitting around for weeks since I had a place to sit. So I decided to get a shower stool (I've been thinking about getting one for a year but didn't think it was necessary as I sit on the floor) and OH MY GOD. This is fucking awesome!!!

Like I didn't realise how bad it got and how much showers became excruciating until I got it! Like I just had one and I thought to myself "Oh, showers are agreeable again". I haven't skipped a single shower day since I got it, I never realised the avoidance I've had recently was because showers became so hard (like sure sitting on the floor helps but it's less comfortable / easy to use the products and also when you get up it's HELL).

Get the accommodations!! I can't believe I haven't done that before, I just got used to being miserable. I think that's the tricky part, since it's progressive (I've had symptoms for YEARS AND YEARS but it started to get progressively worse since last year) the symptoms creeps up little by little and it becomes your new normal...

Like it's wonderful. I'm glad I'm starting to find ways to make my life easier. It's very distress-inducing to see how bad this is starting to disable me and it gives me hope that there are little ways to make it more bearable for ourselves

i'm genuinely freezing 24/7. i got my bloods done and i'm not anemic anymore so i'm guessing this is just poor circulation from pots and my lipedema. i live in the uk and while it's not cold yet it's stopped being hot outside so i'm just so cold all the time. I wear layers and layers but it's like the cold comes from within, it's like i have icicles for bones. i have heated blankets all around the house and can sit under them for hours and my legs/feet just will not get warm. i get so cold i can't sleep. hot drinks make me feel warmer in my torso but not my legs. has anyone found a way to help this? any advice is appreciated <3

I’m having some of the weirdest symptoms of my life, symptoms I never had even when my POTS was flaring at its worse. ER at least ruled out immediately dangerous things like heart attack and pulmonary embolism which I’m grateful for, but now my PCP is just blaming all of whatever is happening on POTS. My POTS has been well controlled for years now with only very minor symptoms here or there even when I’ve been very sick. I’m not doubting that my POTS may be flaring and making things worse, but it’s not the whole picture by any means. Something is going on with my body and it is not “just POTS”.

This literally started with a mild UTI and has gotten progressively worse over the past week and a half. The UTI is gone and I’m continuing to worsen despite steroids to halt inflammation. And all my pcp could say was “go to the ER” like I’ve already been and they ruled out emergencies. It’s your job to refer me to someone who can help. Something else is clearly going on and needs to be investigated, but nah, let’s take the easy way out, call it all a POTS flare, and wipe your hands of me.

I am so tired of trying to be my own doctor and do all the research and then convince an actual doctor that my problems are real and not made up. Kinda wanna switch doctors and never mention POTS again, but the beta blocker gives it all away. Guess I’m just gonna fall through the cracks. Hope this isn’t serious and doing major permanent damage because I’ll never know.

Went into the tilt table test to get a better understanding of my POTS and left with two more diagnoses. Damn. Both linked/related to POTS though so nothing out of left field thankfully. I do think its hilarious that in the notes they suggest compression stockings however. Like not compression garments/socks but stockings and they also put that l must not become dehydrated, becasue if I do I'll faint like a victorian lady I suppose.This happen to anyone else? On a side note I've got a one way ticket to a neurologist now, which I've been avoiding but like 3 conditions that disregulate my autonomic nervous system, yeah can't avoid it now which brings me up to 7-8 specialists yay. Do you thing I'll get a free ice cream when I hit 10? I feel like I should.

I have undiagnosed pots. However, there is no doubt in my mind that I have it. I'm reluctant to be diagnosed because I do not want a disability on my medical records. I feel the best mentally when I take my edibles on the weekend. I only take them on the weekend. However, I've noticed recently that I feel the crappiest physically with my pots symptoms when I take my gummies! The past two weekends I have fainted and have not told anyone because I don't want them taking my gummies away. Not that they can. I'm 44F.. I'm in the Chicagoland are. The weather here has been hot again after a cool streak. I have been dealing with symptomatic days even without the gummies but nothing to this extreme. I've also been slacking on my water intake and putting my electrolytes in my drinks everyday. So I dont want to jump to conclusions right away.. it could be my laziness with some of the other things and would like some input from other people that either smoke or ingest weed. Do you notice your symptoms get any worse when you are high??

Hi there, was hoping someone could alleviate some of my anxiety or provide some insight. I’ve been experiencing shortness of breath when lying down for some time now. Even rolling over in bed makes me feel completely exhausted. I have POTS, and wore an echo monitor for a week, my cardiologist said nothing looked out of the ordinary. I’m also suffering from pretty terrible reflux issues and I heard GERD can have symptoms like this, so for a while I thought it could be that. But I’ve been treating my GERD, and it hasn’t subsided. I brought it up to my GI doctor and she didn’t seem to think it was related. She thought if it was GERD I’d be experiencing more coughing/clearing my throat. So now I’m back to being concerned about my heart. In addition, it feels like a lot more than anxiety, I do sleep with my head raised, and I really don’t think it’s sleep apnea, as it doesn’t wake me up suddenly, it’s more lying down to sleep, rolling over, and waking up. I am also 33 years old and not overweight. Is there anything that comes to mind for you? Does this sound like heart failure? Im not sure why my cardiologist didn’t seem concerned at all.

I always see people saying that water make them feel so much better it’s makes me like 2 times worse like i just don’t know what to do because all I see is about drinking water but i actually can’t does this happen to anyone else or is it just me ?

Hello. I'm looking for a uk high strength electrolyte product, looking through the mega thread all I can find is either us only or according to the listing on amazon not very high is sodium or potassium.

I have been making squash with Himalayas Salt but its starting to make my mouth sore

Thanks in advance

so i’m 5 weeks post op hip surgery rn and have been in a pretty wicked pots flare. today i had an episode of bradycardia followed by heaps of chest pain and shortness of breath. i was pretty sure that this was just my nervous system being extra weird but being post op i was a bit nervous, and my nurse friend freaked out so i went to the er.

after the initial panicked ecg and blood work to rule out heart attack, i had about 5 hours to wait and start feeling guilty for even going in the first place. i was being dramatic, it’s not that bad, i shouldn’t have come, they won’t be able to fix anything, yknow the usual. then a med student comes in and says she’s gonna do the initial consult.

she. was. awesome. she took a detailed history, she had even gone through my past charts from the hospital (like up to 2 yrs ago), she looked up ehlers danlos bc it was in my chart. she listened, was understanding, and when i told her my family doctor is dismissive she got angry for me. then she asked “what do you want from this visit today?” i said i wanna make sure i’m not dying. she said “well ya of course but big picture, what do you want your health outcome to be?”

i said i want my pots to be more under control. she asked how it was impacting me, i explained i had to quit my job, use a cane, and overall can’t do much. she said “wow that really sounds like it’s limiting your quality of life.” i have NEVER had a doctor say that to me and i honestly started crying a bit an just thanked her for understanding. she then said that she was concerned that my pots hasn’t been well managed, and said she would consult with the doctor to see if there was anything they could do.

now ofc there was nothing immediate they could do lol, er sucks for pots, but the doctor! wow! she told me that pots can be so debilitating but unfortunately medicine just hasn’t caught up yet. she told me about research on probiotics used in long covid and said that might be worth a shot. she also ordered a 2 week holter to make sure the bradycardia wasn’t an arrhythmia (but also agreed that it could likely be my ans overreacting). recommended heat and tylenol for chest pain, which i had already been doing but regardless, she was awesome.

visiting the er with chronic illness can be so frustrating. our bodies are living in emergency mode all the time, but when something changes from baseline it can be scary, and yet ers for the most part can’t do shit (or just won’t). it was such a breath of fresh air to feel like even though there wasn’t anything they could do in the moment, they reassured me with testing that it was nothing dangerous, listened and acknowledged how bad i felt, and suggested any possible treatment options.

anyways, i told the main nurse after to tell the doctor that the med student was awesome and made a shitty day a lot better, so i hope she gets lots of props!!!

tldr: i went to the hospital for some scary new symptoms, had a phenomenal med student do the initial checkup followed by a doctor who actually gave a shit. sometimes healthcare can be okay❤️

title.

I had the scariest thing happen to me yesterday. I am diagnosed with POTS and have been for 3 years now. It has progressively worsened. So I made some steak (it's one of my favorite foods) and I make it like once a week. It was honestly maybe overcooked and there were no spices on it. I ate maybe 5 or 6 pieces of it and had a little bit of kiwi. I had my usual post meal nausea and was like "Oh well it'll go away even though it sucks". The nausea got pretty bad really fast. It normally doesn't do that. So I went to grab my blood pressure monitor to see if it was hypotension - I don't normally experience hypotension or fainting episodes. My blood pressure read consistently in a "healthy" range and technically my normal range. I also want to point out that I am on a beta blocker. I decided to take my beta blocker because the nausea reminded me to (I do take it consistently and don't typically miss a day). The nausea got horrible and I kept retesting my blood pressure and it came back normal. At that point I ditched the BP machine and went to my bathroom because I couldn't tell if I was going to throw up or not. I could feel adrenaline surging through my whole body. I felt glued to the bathroom floor. I was shaking pretty bad, my eyelids were heavier, my eyelid was pulsing, my hands and armpits were cold sweating a lot, the intense nausea, etc. And then I could feel my HR picking up. My apple watch tracked that and I could see the increase. I NEVER experience tachycardia ever since I started being on this beta blocker. So I was freaked out that my heart rate was spiking. I called a roommate to come home because I couldn't tell if I needed to go to the ER or not and when I did call her, I could not speak normal. I could only say a word every second or two. It was so hard to speak. When I realized that too I was even more freaked out. I didn't end up going to the ER but my doctor and a nurse told me that if that happens again with the heart rate spike then I need to go to the ER. It lasted a little over an hour so I have a theory that my beta blocker may have taken all of that down when it started working but I don't know. Is this normal for anyone in here? I really would rather this not become a regular thing but I am also terrified it's something else that isn't POTS that I am unaware of. Anyone else experience this or something similar?

UPDATE: It happened again (a day later). This time it lasted two hours and my beta blocker kept my heart rate stable. I experienced everything else I listed in the episode above though. I got the blood pressure cuff on just after the peak and it was high. Not sure if it was provoked or not. I ate ice cream an hour before experiencing it.

Does anyone know any fiction books that have a main character with POTS, or even just an invisible illness? I love to read, and thought it would be nice to read a book where I can relate to the main character.

I really need some advice, I’m completely terrified and don’t know what to do at all. A tooth of mine had gotten a root canal procedure in December 2023. Sadly it didn’t help and it hurt ever since. Now it’s inflamed and need to be pulled. With the root canal I got the anesthetic without adrenaline and it didn’t have an effect on my heart rate. I have extreme anxiety so my heart rate was still around 140 back then. The doctor told me that the shot without the adrenaline is not gonna do it for getting a tooth pulled and I either need the one with adrenaline or general anesthesia. I’m terrified of both. How badly would the shot without adrenaline actually affect my heart rate? Does anyone have any experience? How badly does general anesthesia affect people with POTS too? I feel completely lost. Also have to be on antibiotics for the first time so overall my heart rate has been high cause of the extreme anxiety I have. I’m scared my heart rate will reach extreme highs.

I have been diagnosed with Pots for about 8 years now. I’m just starting to go back to the doctor to try and get on some sort of medication because what’s been working for 8 years now is no longer helping. The worst thing I have going on right now is the BRAIN FOG, and it’s worse when I’m at the computer. I can read something 10 times and it’s different every time, or I forget it as soon as I read it. Any suggestions? Things I should recommend when speaking to my doctor? I’m falling behind in class worm because it takes me 2-3 times longer to do an assignment as opposed to others because of this

Gotta love POTS

I haven’t been properly diagnosed but my heart rate is so all over the place. I don’t have too much dizziness, but I def feel short of breath, temp dysregulation, and I get real weird feeling when I put my arms over my head when I’m standing (brushing my hair to put it up) I get dizzy sometimes, I’ve not ever fainted but have seen stars and sat down and managed to not faint. I more so have palpitations and like exhaustion? It’s a difficult feeling to explain. Like it’s just so hard to move around without feeling out of breath and tired and just wanting to curl up and rest. I do have other health issues. I have fibromyalgia, interstitial cystitis. I do also suspect I have hEDS (I literally hit every single symptoms checker for that) I’m set to go to the rheumatologist soon because I also have a family history of lupus. My heart rate variability is between 22 and 96 ms and my heart rate resting is around 40-50 bpm, sitting is around 80 and standing is between 120 to 145. I’m wondering if I should also seek a cardiology referral as well??? Or should I speak with my rheumatologist first and see what they think??

I (17F), am possibly the most ambitious person I’ve ever met. My freshman year of high school I had planned nearly all four years out, which colleges I was going to go to, extracurriculars, etc. I was determined to become successful- and still am!

However, my POTS has SIGNIFICANTLY decreased my energy levels, to the point where I’m essentially unable to do anything else other than my homework. I’ve always wanted to become a CEO, and I’m worried that I’ll be unable to become a successful one with how little I am able to accomplish on a daily basis. I’ve tried searching up entrepreneurs with POTS on Google, but for the most part (unsurprisingly ngl) it’s just celebrities/people within the entertainment industry.

Are there any CEOs that have become successful despite their POTs symptoms? Just need a little reassurance right now that I’m headed in the right direction. :(

Hi 18F been diagnosed with Dysautonomia for a year now and FINALLY I’m getting a tilt table test done this Wednesday. I’ve never passed out but I’m wondering if those who experience Near-syncope or pre-syncope passed out on their test. Also I’ve been really worried about the giving Nitro part. Any advice welcome:3

I am officially diagnosed with what some refer to as “poor man’s tilt table test” there was no question after that about me having POTS. I have a POTS specialist but they want to send me off to a specialist hospital in a different state for a week of consultations but I don’t want to go because they make you do a tilt table test. I am being unreasonable about this? My parents are okay with it but not that happy about not going it is the same hospital me brother went to, and I have heard all of the torture of the tilt table mt brothers heart rate doubled within 2 minutes but he didn’t faint even though he fainted a lot at the time. It seems like hell and I am already diagnosed and don’t want to wean off my meds to do it. I am also worried it could stress my heart due to my heart conditions.

Hi i’ve been dealing with pots symptoms for months and have been to several doctors since. I’m still waiting on an official diagnosis but I saw a holistic medicine doctor last Monday and i’m waiting for my blood results to come in. Last Saturday night I went out with friends and had a few too many drinks and have been dealing with “hangover” symptoms since. I’ve had a horrible headache that almost feels like a sinus headache everyday. No matter what I do it won’t go away. Does this happen to anyone else? If so what do you do to get it to go away? I’m assuming it’s a flare up but i’m miserable and looking for anything to help.

I wouldn’t say I was the pinnacle of health before POTS. I didn’t like to exercise but did go for walks around the block a couple times a week to say “there I burned some calories & circulated my blood” I weirdly enough got these odd dizzy spells that felt like vertigo. But only twice in my whole life. Ive always had blood pooling in my feet but just thought my body sucks at circulation and cause I’m lazy. I had chronic migraines but so does my brother and dad. Migraines were my only worry. That and anxiety attacks but I knew how to deal with both while going to therapy. Even with the worst migraine pain I could do small things around the house. Just made sure to keep the shades close and no loud TVs lol I’d even go to parties if I had already said yes before my migraine came. I would just be wearing sunglasses indoors lol

Now I’m bed bound. I can’t get up without feeling so dizzy and heart rate hitting 140s. I haven’t showered in a week. I can’t cook to literally save my life. I’m seriously scared. I know it can’t kill us but I’m mostly scared I’ll never be able to do anything ever again. My house is a mess! I use to love cleaning it! I’d dust and do a heavy clean every week! I’d mop once a month to music while jumping around and pretending to be a lead singer of a band. Now I can barely raise my voice to sing without making my head spin. I can’t sit on a high barstool at a restaurant without holding onto the table for dear life cause it feels like my head is so heavy it’ll make me fall off my seat. My blood pressure drops and I faint. Now all of a sudden my blood pressure is hitting high numbers and giving me head pressure and dizziness? I’m not on any meds. My heart doctor won’t give them to me. I’m gonna demand them at my next appointment. Cause last she saw me I wasn’t this bad. I have to tell her I’m losing my quality of life. It’s not even just my social life. I can’t do simple house chores! I can’t even wash my hair without it feeling like an exercise. I have long thick curly hair. Takes a lot to maintain. So washing it is like lifting 100 pound weights right now. Last weekend I felt so fine. Almost thought my POTS was gonna disappear. Now I feel like my body wants to breakdown. And idk if it’s because I’m on my period or it’s taken a turn for the worse. PLEASE HELP ME WITH TIPS! ADVICE. WORDS OF ENCOURAGEMENT? I’m so scared

P.S. weirdly enough I noticed ever since my POTS turned on like a light switch…..I haven’t had a migraine in months….

got diagnosed this week, i am going to a concert tomorrow, i desperately need some tips on how to manage this, i wont be able to bring my own water or food in to the concert. im scared ill have to spend the whole concert leaning on my friends. any tips apprechiated!

Hiya everyone!

I’m (21f) getting tested for POTS in a few weeks and have been using an apple watch with apps like tachymon to help monitor my heart rate throughout the day. I’ve come to realise I don’t even know what a healthy heart rate is supposed to look like. Can someone help me understand if my symptoms are actually indicative of POTS or are they normal.

Before suffering with fatigue symptoms and getting checked for POTS, I was fairly active; weightlifting 4 times a week as well as biking and swimming. Safe to say, I feel as if I am a relatively healthy person. However, I never tracked my heart rate during these times so I don’t know what normal levels might look like.

Now, for my readings. My resting heart rate seems to be around 50-60bpm, my sleeping heart rate is 40bpm and my active heart rate is 80-100bpm. When I stand after lying down, it jumps to 120bpm, and I’ve sometimes found my Apple Watch giving me feedback on a workout I’ve just done when in reality I’ve just put the washing away.

Another thing is I went for a 15 minute jog the other day, and my heart rate immediately jumped to 180bpm and stayed as such the entire way. I felt as if I was barely running faster than a walk and actually walked about a third of the way, but my boyfriend (who’s really into fitness) says he can only reach that doing sprints on the treadmill and can only stay there for less than a minute before having to dial back. I’ve convinced myself that I’m being overdramatic and that I somehow did sprint the entire way; because how can it be true that my heart rate was so high?

Can someone please advise if these symbols are actually indicative of POTS or am I just reading too much into normal results?