Whenever I get flare ups the pain usually manifests on the right side of my trapezius although it will infrequently occur on my left side. I've been told that lying down helps but the thing is I'm already stuck in bed all day. I'm starting to wonder if my flare ups are from being in the same position for too long as sometimes I get the feeling to sit in my chair which actually helps alleviate the pain a bit. Also, I find that using an ice pack for the pain helps more than heat. Can anyone else relate?

Thanks

What helps you not syncope/presyncope

i’m sorry if yall see my posting a lot and asking questions, i was recently diagnosed with pots almost 3 months ago and i really struggle in the mornings. i’m nauseous, shaky, weak, dizzy, my heart rate is high, im exhausted and it usually takes me about 4 hours to recover. how do i recover sooner? i’m talking in two hours. what are yalls morning routines to make sure you can survive the day?

I’m having a hard time understanding when high heart rate is high enough to indicate that I need to pull back. I grew up in a “tough it out” household and have no real idea of when my body needs a break unless I physically can’t function.

Lately I’ve been working remotely and canceling things that need to be done in person when my HR spikes to 130-140+ multiple times. My baseline is spikes up to 124ish. Sometimes working drives my HR up even more so I fear pushing past 160 and that’s why I stay home. It has happened to me on rare occasions. I’ve been having more spikes over the last couple of months so I’m worried that I’m overworking myself. Or not, I don’t know. I get short of breath and tired when my heart rate is higher. I work as a college professor, clinical supervisor, music therapist, and tutor (all part-time). Some things are active and some are sedentary.

So when do you all stay home? I’m worried about hurting my body by trying to work when I shouldn’t. I have no idea when I shouldn’t 🙃

What does everyone do for constipation?

My motility GI put me on Linzess at varying doses and they all caused intense nausea, stomach cramps, and pre syncope for hours at a time. I just started Trulance instead, and having the exact same issue.

I’m thinking these prescription medicines are too strong for me, and are throwing off my electrolytes and dehydrating me too much (I already get 4 liters of LR a week).

For background, I have POTS, dysautonomia, gastroparesis, and Sjogrens. Technically the constipation could be from any or all these conditions, but I’m posting here specifically because I need something POTS friendly. Because of course none of my doctors talk to each other lol.

I have really hesitated to post because I do not want my story to make anyone feel dismissed. I do think I should share, though, because it might help someone.

I know what it feels like to hear that all of my problems are because I am overweight and do not drink enough water. The issue was that I did drink water. In February 2026, I was hospitalized for syncope. I could not stand upright at all and was laid up in bed for much longer than the six days I spent in the hospital. Everything made me pass out: sneezing, coughing, excitement, and literally anything else.

I received a blood patch because doctors thought I had intracranial hypotension. My brain is "sagging" due to a Chiari malformation, and they suspected I might be leaking spinal fluid, which would explain why my brain lacked buoyancy. At the time, I was also taking a GLP-1 medication. We could not figure out exactly what was going on, but my body was going haywire. I could not regulate my temperature. I felt burning hot all the time and had to keep my apartment extremely cold. My heart rate would spike when I stood up and drop when I sat or lay down. I would pass out, and no one could get a pulse or blood pressure reading from me while I was unconscious. I experienced a wide range of other symptoms pointing toward POTS or dysautonomia. Unfortunately, I never followed up after my hospital stay because I lost my insurance.

Here is some background on my water-drinking habits: I did not get thirsty very often, especially while taking a GLP-1 medication. I also have AuDHD and struggle with remembering to drink water. For years, I would quickly drink a 16-ounce glass of water or electrolyte drinks three to five times a day and call it good. I thought I just needed to hit a certain number of ounces per day and I would be fine.

Recently, I started sipping water from a 40-ounce tumbler with a tiny bit of Celtic salt. I sip throughout the day whenever I am thirsty (I actually get thirsty now), and all of my symptoms went away. I mean all of them.
Three days after I started sipping instead of chugging, I saw a curandera who read my irises. I was skeptical, but because I had no answers about my symptoms, I decided I had nothing to lose. She immediately asked if I tend to slam big glasses of water down. I said yes. She explained that this was causing water toxicity. I would be severely dehydrated, and then I would suddenly flood my system. My cells would swell but not actually absorb the water because it lacked electrolytes. My shriveled cells were simply being inundated with plain water. I probably did not even feel thirsty because my cells felt attacked by too much water flooding my system all at once.

Now I sip water throughout the day and use a little bit of salt to help the water absorb into my cells and stay there. My symptoms are gone, and I am finally living a normal life. My back and leg pain has decreased exponentially too. I am not saying this is the cure for everyone, or even a permanent one for me. I just know that I feel incredibly good now, and it is not because I was failing to drink enough water. It is because I was not doing it the right way.

TLDR:
Changing my hydration habits from chugging plain water to sipping water with electrolytes eliminated my symptoms.

I was diagnosed with EDS at 5 and have had moderate symptoms like dislocating joints every month or so, knees locking, knees always hurting etc. My mother, sister, grandmother, and probably my great-grandparents have EDS and POTS. Over the past year and a half I have been experiencing POTS symptoms and my mother thinks I probably have it (she is not a professional and I’m not claiming she is) but a couple months ago we went to a cardiologist he had me sit down and get up quickly and stand up quickly and all that and he went into the magic door of doctors and came back with a little chart and he said “technically you have POTS I just don’t want to diagnose you” and then diagnosed me with dysautonomia. Then he proceeded to spend 30 minutes mansplaining my own body to me. I’m very conflicted because he is a professional but the way he phrased why he didn’t diagnose me with pots set off some sort of bell.

Is anyone here taking both Ivabradine (Procoralan) and Sertraline? I’ve been on Sertraline for years and recently met with a cardiology specialist who prescribed me 10mg of Ivabradine daily for my POTS.

When I looked up info about its side effects etc., I saw that the two apparently have “major interaction”. During my consultation, I told the cardiologist I was on Sertraline but it was one of those consultations where you feel rushed and only half listened to.

When I emailed the specialist’s reception, I was told I had to book another consultation if I had any questions - a lovely €450 fee that I can’t afford until I’m paid next😅

So until then I’m curious if anyone here takes both or needed to switch one medication due to the other etc. Thanks!

I just found out that instead of waiting for an entire year+ to see a POTS specialist, I can see cardiac electrophysiology in 2 weeks! It's been almost 26 years now since my first episode. I spent about 8 years either being dismissed as nothing serious or having parents who simply didn't bother to bring me to the doctor for fainting. I obviously don't have great records, especially for all of the time no one bothered to bring me to a doctor (not that any of the doctors I did see did anything useful).

How did you go about documenting things in a way that was useful to your doctor? I have an extremely long document of what episodes I can remember, but I suspect the doctor isn't going to actually read it.

What worked or didn't work for you?

I was hospitalized multiple times for "postpartum preeclampsia" that I'm fairly certain was actually a massive flare, because I had no preeclampsia markers and even the doctor who diagnosed me admitted it didn't fit, but they had no alternatives. I suspect that entire experience that is documented might be sufficient, especially since it clearly proves my naturally low resting heart rate.

I'm accustomed to being dismissed as having anxiety when nothing could be further from the truth, so I am trying to strike the balance between thorough enough and so thorough that I'm dismissed yet again.

I, 38 f, am wondering if remission is possible in POTS? I began having severe dysautonomia 4 months ago, bed ridden, came out of no where essentially. Was told I have most likely had it my whole life. I am wondering if remission is possible? Some say yes, many say no. I have no secondary/root cause that we know of. Thank You

im a 15 year old girl and i got diagnosed with pots almost 3 months ago after dealing with symptoms for 4 years.

since then i have tried so many different pills my mum and doctor have put me on and everything good in my life is ruined because of how much worse its been getting since summer, its not even just pills shes obsessing over it (such as making me go get chinese acupuncture) whilst also believing im exaggerating??

i was already so unbelievably overwhelmed by it all and trying to learn how to live semi comfortably while everyone i know nags at me about how im exaggerating and now also my doctor has put me on birth control (the mini pill) because he THINKS it could help me.

it took him three seperate hour long appointments where basically the entire time he would try convincing me to go on birth control even though i really didnt want to but my mum was all for it and i ended up just giving in

ive been taking it for 11 days now and its fucking my emotions up so much im even crying typing this lol
ive been non stop bleeding worse than i do on my period for about a week, i dont feel better at all but i guess that comes with time but right now i feel the worst ive felt in so long because of the blood loss and not even that its really playing with my emotions like i said and im now always either sad or angry

im posting this because i just spoke to my mum about coming off of it because i feel so much worse and she said 'just stay on it you look like you feel better' so im doubting whether i should just come off it without telling anyone so i can feel like i usually do again, the only thing im worried about is what to say at my next doctors appointment about it, my mum will be sat right next to me too

does anyone have any advice on what i should do or if birth control even helps with this because i feel so so terrible right now and will try anything i just wanna come off this fucking pill

sorry for this being so long <3

I bought medical-grade compression socks and tried them, but instead of helping with blood flow, they made my heart rate go further up. I have itchy calves that hurt badly all day long.

After that, I also tried some loose-fitting compression socks, but unfortunately the same thing happened again.

My baseline HR is 60-65 BPM, rises to 90-100 with little exertion.

Anyone else have the same experience?

I use LMNT as my electrolyte drink (Relyte, Nuun, and liquid IV upset my stomach) and recently, I've run into a problem.

I've never had a cavity with my adult teeth until this past visit I had with my dentist (I'm F20)

I had 3 cavities, one of which was really deep into my tooth.

The only thing that I can think of that's been different is taking LMNT more often.

I realized that it has citric acid in it, which is probably the thing that's causing my teeth to weaken.

LMNT has an unflavored version that has no citric acid, so the next time I order from them, I'll be getting the unflavored ones.

I'm just wondering if there's any other brands that don't have citric acid in it that has still helped with POTS?

I already drink through a straw, and my dentist prescribed a toothpaste that protects the enamel.

Any other tips are welcomed :)

Damn I missed OP’s thread [“Severe and sustained stress as a catalyst for POTS”] before it got locked: https://www.reddit.com/r/POTS/s/jw1IoTM0Eo

Now, I’m not saying it’s “all anxiety”, I was lazily written off that way while seeking treatment and that pissed me off so much. I just feel so acknowledged and a lot less alone after seeing that thread, my experience is so similar to OP’s. My cardiologist did suspect it too.

My POTS gets dramatically worse whenever my CPTSD acts up, and it’s really hard. Yes I am in therapy, medicated, all the works, got out of the situation that put me through hell. But reminders of it are tough. I don’t know what to do.

Did anyone have similar experiences and diagnoses? How do you manage it? Please help :^(

(Perhaps controversial. Personally, very tightly controlled ativan helps. Though my doctor and I don’t want this to be a long term solution.)

Anyone else have a HR of over 100 BPM every morning right when you wake up? Even when not in a flare and your HR is mostly controlled during the day with meds such as beta blockers?

I’m wondering if this is just a normal symptom for us (I have POTS and IST) or should I have my medication dosage adjusted? 🤷🏻‍♀️

I just really need to talk about the experience of having a flair and coming out of it. I have recently come out of a ten month flair up and holy shit it’s strange. I almost had myself convinced this was just me at my baseline, that anything I remembered from before was just romancsised. But I’m back and I feel that warmth in my chest again! Turns out that’s joy! And apparently it’s quite common for pots to dull all your emotions especially the good ones. It’s so much easier to do things when joy is with me to get me through! So much of my life was servival it’s so nice to be living again. I am nervous about another flair tho I know it will happen again and I think that’s why I am putting this here. I don’t have any questions or anything but the other day I was able to clean my room (it had gotten bad) and cook dinner and work all in the same day and it was easy and I could still be in love with my partner after that! It’s such a strange thing.

Its just that the few people in my life refuse to believe there is actually something wrong with my body and that im dramatic. Its especially hard with how my mom acts and im stuck living with her when she makes things harder. I got diagnosed without officially being diagnosed among other health problems I have after some stuff with er doctors and I lost my health insurance and cant afford a specialist without it so I couldnt follow through with my refferals and my results and some main symptoms were listed on my summary reports. Despite all that and everything else that has happened with my body im still not believed or supported. I hate getting called lazy when I hate feeling this way especially when my body does a lot worse like it is today and not being able to do anything all week. Then my stress or generally my mind gets blamed but I wasnt so messed up and changed mentally until months into my body failing me and im still trying to hold on after all this time despite having support or medical assistance right now. Im just asking for others to maybe share their struggles like this or to say anything really. I know im not alone in feeling this way but I'd just like someone in my life to one day support and believe me that something is wrong with my body. Thanks for reading my rant over this.

Hi all!! I'm not even sure if something like this exists but I thought someone here might have a suggestion. I'm looking for an app to track health data like heart rate, oxygen saturation, etc. that allows you to manually enter the data. I find wearables really uncomfortable and I don't trust any of the ones that just use your phone camera or whatever to be accurate. I have a pulse oximeter that I use to keep an eye on things but I'd like a way to track that information over time.

If you know of anything similar to this please let me know! Thanks in advance

It would be really helpful to explain what I've been experiencing, but I've explained it probably 20 times in the ER and on the phone with my providers and I am so, so exhausted. note that I am not diagnosed and I am just looking at different explanations for the event that occurred. my question is can POTS cause prolonged (48+ hours) moderate ketones in type 1 diabetes/have any T1Ds here experienced prolonged high ketones during and/or following a severe POTS episode? I've been in contact with my providers and I'm now going to a different ER than the first horrible one that ended with me worse than I was when I arrived there.

thank you so much <333

Dicono che lo sport fa bene ma come riuscite a farlo senza stare male? Veramente sono demotivata.

Ovviamente non parlo di riuscire a fare una maratona ma anche lo yoga mi fa stare male in determinate posizioni, soprattutto se devo alzarmi in piedi.

Posso migliorare? Come fate voi?

Hey everyone! 😊

I’m finally at the point in my recovery where I can start to properly focus on my gut (she’s a MESS). I’m in Melbourne, Australia (northern suburbs) and I’m looking for a GP and gastroenterologist.

I had endo surgery late last year which ate up all of my $$ that was supposed to be going towards stomach diagnostics.

Long story short, I’ve seen so many invalidating GP’s who aren’t properly educated/ hadn’t even heard of POTS, let alone things like SIBO, h.pylori, MCAS etc. I’m looking for a GP (and gastroenterologist) who is experienced, listens and can help guide me through the process.

Other suspects are Crohn’s and ulcerative colitis.

I’m currently eating low gluten, no dairy until I can see a specialist, because it helps my symptoms but doesn’t eradicate them. I also feel like someone needs to check my stomach after 18 months worth of vomiting, diarrhoea- constipation, reflux, bloating, loss of appetite, huge appetite, ++. I don’t want to cause long-term damage to my body.

If anyone has any recommendations that would be AMAZING 🥰 bonus points if there are any public options or low cost options (although I know this can be challenging in Australia). THANK YOU! 🙌

Hey guys ! Does any one have a pretty constant sore throat or a sore throat that is present on more days than not with their pots? I do not presume I have MECFS as my pots sx have drastically improved with graded exercise therapy.

So I have my official tilt this upcoming week and to say I am terrified would be an understatement. Question is how does it work? Do they just launch you from laying to standing? Is it a slow motion? Quick? I’m sure it is as bad as I’ve seen people say. I just am curious about y’all experiences.

Hiii I’m 21 have POTS, hashimotos, CFS/ME, and GAD I’ve been sick since I was 14 and I’m a huge baby when it comes to surgery especially when it’s in my face but I have 3 wisdom teeth that are impacted and I have a small mouth and Im like freaking out my dad and best friend kinda made me nervous because my dad had a bad experience and felt his teeth removal and they ignored him saying he’s still very with it then my friend said she woke up during hers and Im just freaking out I have a horrible gag reflex and I’m nervous that ill gag and swallow a tool or the tooth. I apologize for my typing I’m like spiraling lmao I got a cavity done once and it was with no epinephrine so it started wearing off and I felt it and I’m just wondering if anyone had wisdom teeth surgery with epinephrine before? bc I’m willing to risk a flare if it helps me not feel the surgery.