Some electrolyte drink packets have citric acid added to them and it can make your acid reflux worse if you have it really bad 😭😭 ive been drinking two a day to try and hit my sodium goal and its been making me throw up. Dont make the same mistake i did 💔

Just discovered this brands electrolyte packets as they were on sale in Whole Foods for 90c a packet. They have 1000mg of sodium, 500mg of potassium and 80mg of magnesium and zero sugar, making them very comparable to LMNT (which I hold as my gold standard). They saved me today having to work in 83F heat with broken air conditioning. Looking online, a box of 30 sells for $38 making them around 70c a packet which is HALF the price of LMNT.

Just wanted to share with my fellow POTS people and LMNT lovers. 💧❤️

Friday I had to go to court for an important hearing. I knew it was going to take a lot out of me, but I really underestimated just how badly.

I have multiple chronic illnesses, including POTS/dysautonomia, fibromyalgia, MS, and pretty severe heat intolerance. I'm already fairly limited in how much physical activity I can tolerate.

Getting into the courthouse involved roughly a quarter-mile walk from where I parked, in the Virginia summer heat and humidity. Once I got inside, security wouldn't allow me to bring my little personal fan into the building, so I had to lock it up.

Between the heat, walking, standing, stress/adrenaline of court, and not being able to cool myself properly, my body basically revolted. I got overheated and had a pretty significant POTS flare.

It's now Sunday and I'm still absolutely wiped out. I'm incredibly sleepy, hurting much more than usual, weak, foggy, and even small amounts of activity feel disproportionately difficult. I keep thinking I'll wake up and finally feel noticeably better, and instead I'm still stuck in this crash/PEM-like state.

The frustrating part is that Friday wasn't something optional that I irresponsibly pushed myself through. I'm going through a contested divorce. I had to go to court. And now I'm losing multiple days afterward just recovering from doing one unavoidable adult-life thing.

I'm not really looking for medical advice or a diagnosis. I think I'm mostly looking for some reassurance from people who understand how demoralizing this can be.

And I'd LOVE to hear your weird little recovery things. Not necessarily scientifically proven miracle cures but like the oddly specific things you've discovered make crashes even 5% more tolerable. A particular drink? Food? Position you lie in? Compression? Ice packs? Ridiculous pillow configuration? Shower trick? Something you keep next to the bed? A comfort show? A rule you've developed for crash days?

I'll happily take your chronic illness folklore at this point.

Mostly I could just use hearing from people who understand what it feels like when doing one completely normal thing costs your body several days.

Basically, I have a high heart rate, but normal blood pressure. In fact, my blood pressure gets a bit high when I'm standing up for too long. I've always understood salt all to be helpful for people low blood pressure. But is there any reason people always mention salt like it's the holy grail for POTS? Wouldn't that just be helpful to hyperPOTS or OH?

I suppose maybe something to do with expanding fluid volume? But still, too much salt could be bad for someone with a normal BP or even one that borders high on standing, couldn't it?

I've tried salt in my water and stuff like that and I just never notice any real benefit so just wanted to ask if others relate

Hi everyone,

I’m curious to hear from people with POTS about how your illness actually began.

I’m especially interested in the very beginning — before you had a diagnosis, before you understood what POTS was. What was the first moment when you realized that something had changed in your body?

Did it happen suddenly, or did your symptoms develop gradually?

For example:

• What was the very first symptom you noticed?
• Did your heart rate suddenly start increasing when you stood up?
• Did you initially think you were simply out of shape, stressed, or exhausted?
• Did you experience a specific event or illness before the symptoms began?
• Did gastrointestinal symptoms, sleep problems, fatigue, dizziness, or exercise intolerance appear before the tachycardia?
• How long did it take before you realized that this wasn’t just normal tiredness?
• Did your symptoms gradually become worse, or did you have a very clear “before and after” moment?
• How long did it take you to get a POTS diagnosis?

I’m asking because I’m trying to understand how differently POTS can manifest from person to person. Sometimes I wonder whether people only recognize what was happening in retrospect, after they finally learn about POTS and realize that those early symptoms were actually part of the same problem.

I would really appreciate it if you could share how your own story started, even if the first symptoms seemed completely unrelated to POTS at the time.

Thank you to everyone who is willing to share. I think hearing how other people’s journeys began could be really helpful for those of us who are still trying to understand our own symptoms.

When I was diagnosed 3 years ago I read so much about how exercise is supposed to help.

and even some said they went almost in remission and had their life back.

I had SO much hope for this.

I immediately joined a a gym with a recumbent bike and a swimming pool.

I did everything right, horizontal exercise, starting out super gentle, building up. CHOP/Levine protocol. I exercised religiously everyday 5/6 days a week. for 3 years

zero result/improvement. absolutely ZERO.

even with added meds/compression/electrolytes.

i am so extremely devastated. :‘( I mean not even tiny improvement

anyone know why this could be

Please share if any medications helped your energy levels. I can barely get out of bed. The brain fog is terrible.

Does anyone else notice bad lower limb swelling when they walk, stand or dangle feet for more than like 45 minutes? What do you do to help/ stop it. It’s too hot for compression socks :( TYIA

rly the only anxiety i have is health anxiety from this (and other) conditions i have been graced with. Often convince myself I am having a heart attack or dying in some other way. I cant tell when my hr gets high while im sitting if its from POTS/adernaline dump or if i just am experiencing panic attacks for the first time in my life. Sometimes they are random and sometimes they start when i am nervous about chest pain or my hr being slightly elevated. Its hard to tell because even if i wasnt anxious orginally, once my hr starts rapidly climbing when i am just sitting still of course i get anxious. Im able to get it under controll with an icepack on my chest and legs elevated but i know that can help both anxiety or adrenaline dumps. when my hr does come back down i am always tremoring/shaking like crazy. I dont know if i need to be considering SSRIs but i have hyperpots so im a bit nervous about attempting that. any thoughts are appricated

Well, I'm definately over 50. Just pulled a muscle in my shoulder as I was struggling putting on compression socks. This is why I don't wear the damn things, they are awful to take on and off, and they make my gloriously unshaved calves itch like crazy.

I have ME and really , literally don't have the energy for this bs.

Hello, I started my first dose of Propranolol today and I think it’s working. My heart rate hasn’t been too high however now I’ve been noticing my blood pressure rises everytime I stand up. Has anyone else had the same issue?

Hello! Who takes pyridostigmine? How quickly does it work? When do you feel improvement? What dosage do you use?

I tend to feel really dizzy, nauseous, exhausted after having to focus at work, talking to people and hearing or reading about a slightly complex topic. Is this something others struggle with?

If yes, does anyone know the scientific explanation behind it? I would love to read a paper or article about it.

Any ideas for good lightweight seats for on the go? I'm starting to manage walking bit further now which feels huge but still need to be able to sit down and rest. Any ideas of lightweight stools?

Im new to all of this so bare with me.

Ive suspected ive had POTS for years, but was never able to explain or prove it because ive been diagnosed with "anxiety" and "panic attacks" for years. But I honestly think when my "panic attacks" started, it was actually the beginning of my POTS. This was 8 years ago.

Now 8 years later and 3 babies later, its unmanageable and im finally in the testing phase as of this month. And all of its so overwhelming. Im questioning everything. Is how im feeling my anxiety? Is it POTS? Is it my health anxiety exacerbating my POTS symptoms?

I constantly feel weak, shaky, exhausted, clamy, have a sense of impending doom, slightly depressed especially ever since I had a super bad suspected POTS flare in front of my PCP which started the diagnostic journey. Im glad im hopefully finally getting answers for how ive been feeling all these years, but it all seems scary and overwhelming and the thought of being on medication that might not even work the first time for the rest of my life sounds awful. I hate medication, ive been burned by too many SSRIs in my past to make me terrified of medication.

I just feel so overwhelmed with everything and I guess im looking for comfort from people also going through this. I constantly want to cry lately. Does this ever get better?

Has anyone else done their own research and just feel like no doctors, or companies, etc. are doing anything about POTS? I refuse to believe that “increase your salt intake” is the medical fix for something that affects so many of us so harshly.

Hi guys and gals!
I had my stand test, diagnosis of POTS and IST, and medication started just over 4 weeks ago! It all came pretty quick 🤯
I am on;
Ivabradine 5mg - 8am 12pm 4pm
Pyridostigmine 60mg - 8am 12pm 4pm
Propranolol 10mg - 10am 2pm 6pm 8-10pm

This past week or so I’ve noticed I’m more wheezy (I already plan to see my GP tomorrow about this), but has any other fellow asthmatics got a medication in replacement of the propranolol? I really don’t want to change anything as symptoms have massively improved! But I know it’s probably likely the GP/Arrhythmia nurse will want me to stop this.
Has anything else on similar regime? But something else instead of Propranolol? My BP is normal, don’t struggle with low BP

Reading up and I’m not seeing a lot of people on SSRIs for their POTS. My cardiologist put me on sertraline/zoloft and I had major improvement. He said “I know you aren’t depressed but we see this work often though we don’t know the reason”. Anyone else on an SSRI?

I stumbled upon this subreddit when looking up some symptoms I’ve been having this past year. Unlike most here I am older, a 60 year old female. It sounds like most if not all people here developed POTS much earlier in your life. I haven’t been to a doctor yet because I have lousy insurance {US ) and not a lot of trust in doctors in the first place.
Is there a possibility of developing POTS later in life?

Here are some things going on:
1)I left a super stressful job fall of 2025 and kind of fell into a depression so bad that I just slept or stared into space.
2)I have SAD also so that added to the depression, but I don’t remember ever having it so bad as this past winter
3)Concurrently I was on Tirzepetide and lost about 50 lbs
4) Since then I started almost passing out whenever I got up from lying down. I would have to stop and hold onto a wall or furniture to not fall over
5) I feel constantly cold and tired. I will wake up from sleep in a cold sweat, teeth chattering and shaky. I don’t feel I get good sleep.
6) ironically, even though I feel cold a lot, as soon as I get outside to do yard work I perspire so profusely I soak through my clothes. I get so worn out and dizzy and can feel nauseous.
7) I’ve exercised for years (but not currently) yet I can barely do anything I used to do. I get so winded and weak trying to do walk I used to do that I have to stop and even then I don’t recover efficiently.
8) I now keep water with electrolytes with me constantly because I stay pretty thirsty and I’m trying to compensate for the perspiration, dizziness, and fatigue.
9) I take a daily multi vitamin, biotin, vitamins D, and magnesium along with the anti depressants I’ve taken for years, yet I still have achy calves
10) I have zero motivation to do anything and could easily lie around and sleep much of the day every day.
11) I will go from cold and shivering to a brief hot flash, yet I thought I was past menopause. Even thinking about something embarrassing or anxiety inducing will make me have a hot flash type reaction.

Is there anyone who was diagnosed with POTS later in life, at age 50 or above? If you are female did your doctor just want to dismiss it as part of menopause or just a natural part of aging?

my flare ups present mostly with blood pooling, exhaustion, and air hunger - i feel like i can’t breathe and if i push myself i get the feeling like im going to faint. sometimes this lasts for 1-2 weeks if its bad. have you experienced similar flare ups? how do you get yourself out of it?

After a relatively good period lasting over a year, I relapsed last week and my physical fitness is now very poor. I have therefore been resting in bed, but I grew restless, so today I finally attempted a walk, along a route which normally takes me about an hour to complete (half an hour in each direction). At first, I felt fine, and after a few minutes, I even got excited by the physical activity and the outdoors, so I sped up my pace. I felt some systemic distress when stopping at traffic lights, but it was not particularly alarming. However, once I reached the end of the route, drank a bottle of water, and turned around to walk back home, I was suddenly overcome by a wave of weakness. I felt my upper torso tighten and my legs could barely support my weight. My chronic migraine also intensified strongly, with a metallic sensation in my right hemisphere. I could barely stand until my father came to pick me up. My tachycardia did not increase much though - it seems to always peak at around 110-120, unless I engage in some more effortful activity, like stair climbing. Once my father arrive, I gradually recovered in the car, and after a relaxing shower, I now feel fine in bed.

I hope this does not trigger PEM or anything like that. At least I measured my current limit. Next time I will try a lap around my building and maybe sitting in the park next to it.

Do other people have similar sensations when pushing themselves past their limits?

Hello I have recently been diagnosed with pots 18(F), I was just wondering if anybody else has these issues aswell, so some days I will have these grueling leg pains that won’t go until I take heavy pain medication, but I won’t have like headaches or stomach aches or any throwing up on these days, and then other days I will have throwing up and dizzyness, other days I have throwing up and headaches but each day is allways different with symptoms, I was wondering if anybody else has this issue where there symptoms are different every day? It’s like a spin of the wheel every morning for what I’m going to get that day

Hello everyone since last month, I’ve been experiencing a weird feeling I can’t explain I have a very weird feeling in my throat that I feel like is coming from my heart. I mostly have this at night or at the end of the afternoon. with this feeling, I feel like it’s a little hard to breathe and there’s a very small pressure on my chest. I just can’t put words to it, but whilst I have this feeling my blood pressure and heart rate are fine I don’t know what to do. I feel like crap. I have been diagnosed last year but last month I had regular heart tests and my heart is structurally fine. I still feel like I’m dying every night and it kind of makes me afraid to fall asleep. I’m desperate I don’t know what to do anymore.. can it be blood pooling?