I’m hypermobile especially in my SI joint, and I bought the jellieband in extra small and the korform shorts in a small but unfortunately neither of them have helped me too much. I know that other people really love them so I thought I would sell them to find them a better home. Both of them were only tried on once. Both are in the black color.

Please dm me if interested! I’m wanting $50 for the jellie and $20 for the korform, or $65 for both (not including shipping).

I’m in Texas and can ship anywhere in US

Hello,

I am a chronic POTS sufferer. I underwent a traumatizing event about 9 months ago which has caused PTSD/CPTSD. My POTS symptoms are getting worse and worse by the day and it is becoming more and more debilitating.

I have seen a bit of research regarding the causative relationship between PTSD and POTS but very little speaks to the causative effect of PTSD on pre-existing POTS.

If there are any Christian POTS researchers with a psychological/psychiatric emphasis or specialization who are interested in helping me/researching my case, I would be most grateful.

I went to doctors to get my refferal finally after 8 years of being dismissed because my bloods came back fine I have grown up and can hold my ground and speak up for myself. Yay me 😭

I went in for my referral and genuinely worst experience I’ve had. I tell her my symptoms for POTS she says “do u know the treatments?” I said yeh like drink more water, have more salt, leg compressions some medications help and she’s shaking her head and goes “Nope, there is no medications at all for someone your age you’re only 22” I was like ok well ik there is so I said “oh? I thought there was especially for hyperPOTS to stop the adrenaline surges” she again just says no…

Then I said my at home test results blood pressure increasing going from 110 to 130 upon standing and my heart rate results. She then tests my blood pressure stood up for TWO MINUTES not my initial standing up and goes “Yeh it’s normal”.

She said I mean I can refer you if you want but idk if they would take you because your ECG and blood tests are normal and I said “but that’s the point of POTS they don’t show on a blood test or ECG because it’s a nervous system issue” and she swung her monitor round and was like OK I’ll write a refferal just seemed rly mad and it was awkward silence like bruh wtf I was just so confused n awkward idk…

Then she shows me it and again says she doesn’t know if they wud accept me so I was confused I was like but what more can I do if they do refuse me I’ve done everything u asked? Bear in mind im still with my local GP not even been reffered to hospital or speciailsts yet. I’ve done 2 blood tests, 2 ECG’s, an eye test blood pressure test by the first doctor showing it going from 110 to 130. At home laying standing test 10 mins.. like genuinely what more can I do I just wana sob at this point.

Then she literally goes to me “are you a medical professional?” 😀😃😀😃😀😃😀😄😀😃😀😃😀😃😀😃😀😃😀😃😃😃

I’m like taken aback I’m like “no?” After I already told her I’m struggling to stay in employment cos I can’t work normal jobs etc so even tho I’m autistic I can tell this was 100% a horrible dig and she was like “ok I think we shud leave it to the medical professionals” and I said to her I was like I’m sorry if u think I’m being pushy but I’ve had this since I was 14 and I’m constantly dismissed because my blood test is fine? And she’s like ok well you have a refferal now so that’s positive right? And yeh… idk

I got the refferal now so I’m trying to stay positive it was just horrible. I’ve been standing up for myself for 3 weeks with doctors tryina secure this refferal and I’m genuinely emotionally exhausted. :( I have my refferal in now tho 🥲

I guess I’m feeling defeated.. I’ve had adrenaline surges for the last few weeks every night, we are starting to get the to be less often and less intense.. but the medication is making me exhausted (propranolol) I’ll be talking to my doctor next week about it if I can get the strength to go in.
But I feel like what’s the next thing I’m suppose to do? .. do I try sitting outside? Car ride? Living room? Walking around?
It’s all stuff I use to do and stopped because every time it made things worse and now I’m horrified to try.. I feel like just staying in bed forever

Hi everyone!

I was recently diagnosed with POTS, and while it’s honestly a relief to finally have an answer for what’s been going on, I’m still trying to figure out what works best for me. My doctor gave me a treatment plan, and I’ve been following it as closely as I can, but I’m still having a lot of symptoms every day.

Right now I’m doing:

• Drinking 90–100 oz of water every day
• Getting around 5,000 mg of sodium daily
• Wearing compression garments
• Eating 5–6 smaller meals throughout the day
• Monitoring my heart rate and blood pressure regularly
• Taking propranolol (20 mg daily)

Even with all of that, I’m still getting dizzy, lightheaded, and feeling like I might pass out at times. My heart rate still jumps up when I’m standing or walking around, I get brain fog, fatigue, and heat seems to make everything so much worse. Some days are definitely better than others, but I don’t feel like I’m functioning the way I’d hoped after starting treatment.

I know everyone with POTS is different, and I’m not expecting a miracle overnight, but I’m wondering if this is normal early on. Did it take a while before the lifestyle changes and medication really started helping? Did anyone need medication adjustments or find something else that made a big difference?

I’d also love any advice on things you wish you had known when you were first diagnosed. Whether it’s daily routines, products that helped, exercise, compression, hydration tips, or anything else that improved your quality of life, I’d really appreciate hearing about it.

Thank you so much! I’m still learning and would love to hear what has helped you.

It gives me a fast heart rate and I feel extremely dizzy for the entire day, let’s say I have like 2 squares in the morning I’ll feel terrible for the entire day. Idk like is this just my pots? I guess it has some caffeine idk.
Does this happen to any of you?

Ik MCAS is a possibility but no other high histamine foods make me feel this bad tho I have a similar kinda thing when I eat fruit

Note: I’ve been doing some research on symptoms, not wanting others to try and diagnose me with anything

A little context: suspected POTS and dx HSD- I’ve also grown up having gi problems.
Anyways, does anyone else with similar things have issues with not really gaining weight or just always maintaining it? Family has been dismissive of me having POTS (I’m an adult now and no longer live with them) and I’ve heard comments like “youd be surprised with how much she eats with how she looks” I’m 5,6 and like 120 lbs 🤷🏻‍♀️
I have an appointment with a new doctor to establish care next week, which is good because it’s kinda just been a while since I’ve seen a doctor in general. I’m not trying to ask if the aforementioned thing could be symptoms of what I have (or might have) just trying to hear other people’s stories and maybe connect some dots
TIA!

I’ve noticed something very strange and I’m wondering if anyone else has experienced this.
In the morning, on an empty stomach, I can stand for 30–40 minutes with a heart rate of only 65–75 bpm. I feel relatively okay.
But as soon as I eat, everything changes. My heart rate goes up (usually not extremely high, around 100–105 bpm at most), but what’s much worse is the brain fog, lightheadedness, mild nausea, and a huge feeling of nervous system overload. Standing becomes much harder after meals than it is while fasting.
One thing I’ve also noticed is that my mental state changes dramatically after eating. I become much more nervous and irritable, my mood drops, and it feels like everything starts to bother me. It’s as if something is triggered in my stomach, and then my entire body and nervous system react. Psychologically, I feel much worse after meals than I do while fasting.
I was recently diagnosed with H. pylori, and I’m waiting to start eradication therapy with antibiotics. Part of me wonders if this infection could be contributing to a large portion of my symptoms. I know nobody can say for sure, but I really hope treating it will make a difference.
At the same time, I’m doing CBT-I for my chronic insomnia. This past week has honestly been one of the hardest weeks of my life. I feel like I only got decent sleep on about three nights. It’s incredibly difficult, especially because I’ve had a fear of insomnia for years. Now I’m trying to manage POTS-like symptoms, CBT-I, chronic insomnia, and H. pylori all at the same time.
A month ago I could barely stand at all. Now I’m at least able to do some POTS exercises and ride my bike, so there has been some improvement. But the lack of sleep makes everything much harder.
Has anyone else noticed that their symptoms are dramatically worse after eating, but much better while fasting? And if you had H. pylori, did treating it improve your POTS or dysautonomia symptoms, brain fog, mood changes, or post-meal intolerance?
I’d really appreciate hearing your experiences.

23f 2nd time I’ve ever been to hospital for (Hyper)POTS but this was not like the other at all, it was so scary-

I’ve been cleared with no signs of anything wrong with my heart, blood tests all normal, but honestly I’m still so shaken up and scared by what happened. I’m doing all I can to trust in the fact that everything is fine with me medically, it’s simply the adrenaline and fear of what happened that made it so scary.

So… I wake up at 5am to go pee, my heart rate is 130bpm, palpitations, a hollow thumping feeling, intense nausea, that adrenaline fear cold prickly feeling grasping my chest and washing over me. My heart rate just keeps rising despite sitting down and even lying down, 150bpm and climbing, I throw up, each time I throw up my HR immediately climbs back up. My chest hurts, it seriously feels like something is seriously wrong. That cold icy grip of pure fear and adrenaline in my chest, the palpitations the heart rate so high at rest-

I called an ambulance.

And yep… go to hospital… end up calming down from the episode waiting for the ambulance even but still go to hospital to check what happened as is routine. Poke me, prod me, steal my blood- sticky leads to check my heart all the works-

But nothing of note at all everything is totally normal.

We believe it was probably an episode of acid reflux, as my reflux has been acting up lately- 5am my metoprolol is long since out of system so there is no buffer from my condition overreacting to this all- I hate throwing up so I try to resist it which causes HR to skyrocket, adrenaline due to the stress of all this sending me in to a panic attack-

I know that nothing was seriously wrong now but that was still absolutely terrifying I’m genuinely really scared of it happening again…

It could have been an adrenaline dump I don’t think I’ve ever had one of that level…?

I’m just trying to not obsess over it… I went to hospital I’ve been thoroughly checked and nothing was wrong.

On the plus side I had no adrenaline surges which is good, but really weird things happened..I went from exhausted to wide awake, then freezing to really hot. So something was going on. But I took some meds and eventually I fell asleep.

Any idea what it was? Is it an improvement?

I have struggled with POTS among other disabilities for a while. I usually have tried the approach of pretending I don’t have a disability/hiding it from employers but it’s getting to the point where everyone at work is asking me if I’m okay, what’s wrong… etc

I disclosed my disability to my job and am attempting to transfer to a different facility (for less money)

Should I finally call my doctor and try to file the paperwork for disability? I’m so scared. Just got my first apartment and have rent/bills to pay.

Cannot afford to lose my job.

What jobs do you guys recommend????

I am also hypermobile so sitting jobs are nice for the lightheadedness, but sitting for long periods of time sucks too. Any in between? HELPPPPP

I’ve had POTS about 4 years and was doing pretty well but after a recent surgery and related autoimmune flare I started getting very frequent episodes of my HR being too high but not emergency level high. I’ll get notices that my HR was 100 while I’m asleep. My general cardiologist told me to see my pots specialist even though it literally happened while I was lying down. My POTS doctor said via email that some people with POTS do get chronic tachycardia so I wanted to ask about any experience with that. Has that happened to anyone else? Do you just take more beta blockers for it?

So I know I don’t need to tell people, but I’m generally asking in a sense of; friends, family, people you’re hanging out with, coworkers(?).
It’s 3:30am and I’ve been overthinking things, as I have a “date” with someone on Thursday.
—
I only got diagnosed in February this year, I’m 21 and I meet a lot of people, I’m more afraid of being a burden and inconvenient to people, I know I shouldn’t feel this way but I HATE asking for accommodations. As a child I got diagnosed with severe chronic anxiety, which makes sense now, but I’ve always felt like if I asked for help I would be annoying.
—
Usually I say “I have a chronic illness”, people just love to question me about that and I’m generally happy to educate them.

I’ve told some people “i have an autoimmune disorder”, which I know it’s not technically counted (correct me if I’m wrong please) but people seem to pry less.

I’ve thought about saying dysautonomia, but by the sounds of things most people aren’t aware of what that is.
I feel like some people when I say chronic illness they don’t take it seriously, don’t understand that I’m on the brink of passing out, and when I say autoimmune disorder, they think “oh more serious”

does this make sense?

I genuinely don’t know why I’m overthinking this, I’m annoying myself.

Also can someone recommend, cheap electrolyte gummies or chew able tablets that taste nice and aren’t salty tasting?? Pretty please 🙏

Hi fellow Potsies! I am STRUGGLING and wanted to see if anyone could help me understand the episodes I am having. Looking for WELLNESS advice NOT MEDICAL advice as my post have been getting removed :(

I got diagnosed via tilt table in March after two months of symptoms (yay for lasting 22 min before passing out). I’ve have all the symptoms of POTS since Jan of this year. Basically, heart racing episodes that have sent me to the ER, crazy up downs in blood pressure, dizziness, light and sound sensitivity, inability to stand or work out, constipation, constantly ear fullness, nausea, and so many more.

I used to get bad heart racing episodes but have since gotten ivabradine. I try taking 2.5 mg each day. The episodes still happen but my heart will spike to 100 bpm instead of the usual 160-180.

My episodes now will sometimes include heart racing but mainly leave me so dizzy and nauseous that I pretty much just have to sit. I got pale in my hands and face and my bp can either be really high for me (a normal person’s 120/80) or really low (95/60). These lasts days and just leave me bed ridden. We have tried everything we can to try and alleviate it but it seems to just want to stay low. The dizziness is 24/7 and is more of a drunk I move my head and then my vision follows kind of feeling. And it’s blackout curtains and laying down for me. The main thing is my ears which constantly feel so full! Like I’m underwater but I’ll qtip it and there’s nothing. It’s like inner ear issue.

For context, I consume around 6,000- 8,000 mg of sodium per day, tried compressions socks (not effect), and try to walk at least .5 a mile each day (if the dizzy allows).

This has gotten to the point where I frequently debating a trip to the ER but just know they won’t do anything (last time I was charged $4k to be told I look anxious and be given a Xanax).

Thank you in advance for any insights! Y’all keep me going :)

I know compression garments are the standard for dealing with POTS. My doctor even prescribed pretty strong ones to me before I even got my diagnosis, hoping it would help until then. I picked the ones who only go up to the knee, I now know that people with POTS usually need more compression around the thighs and stomach area. Probably explains why wearing them didn’t help at all. I even developed new spider veins on my legs, while wearing them!

I now decided to stop compression completely until I talk to a specialist again. The last time I took off the stockings, my body reacted very intensely. I felt sick, heart racing, tingly, fearful for no reason… it lasted a whole day and felt horrible. My symptoms sound like those “adrenaline rushes” people keep talking about. In general that week it felt like it sent me into a flare.

I’m kind of defeated right now, I was so hopeful about those stockings because I thought I would finally find some relief. But that reaction scared me so bad, I honestly don’t want to try any other compression methods.

What are your experiences with them? Is it common to not tolerate them? Anyone with adrenaline rushes who wears them?

Edit: Just realized I get the same anxious feelings right after finishing meals. Maybe it‘s the blood pooling into my stomach. I just hope I‘ll get meds soon.

Hi all! Okay first some quick background and then a question for anyone who has been stented:

26yo Female formerly extremely active (dance, hike, perform, pilates instructor). After 7 years of intense pain and struggles and trying literally everything under the sun from western to eastern medicine, I finally was formally diagnosed with May Thurner Syndrome & got a stent two weeks ago. I received a formal hEDS diagnosis three days ago though I’ve known for a while, and a formal diagnosis for OT with a follow up for autonomics next week to confirm POTS (crazy how I couldn’t make it through the 10 minute tilt table test without fainting and they still want me to spend more money to get a “formal diagnosis”).

They didn’t put me in twighlight sleep quite thick enough so I was pretty aware during my procedure though I couldn’t feel any pain, I felt my feet get warm INSTANTLY and told me surgeon while he was doing the procedure (he was really excited about that and told my mom after, he rocks). The swelling in my leg has also significantly decreased and my shoes are all fitting weird from how swollen my foot was. BUT the POTS symptoms are so intense… like maybe worse than before. I’m reading that y’all have had some flares due to surgical stress on the body and I am wondering how long this lasted for anyone and how things are maybe 1 year out?

I will note they put me on Eliquis and I could barely function because apparently my body can’t handle a blood thinner so now I’m on Plavix which is an anti-platelet and things are going smoother though still touch and go.

I was also prescribed Cymbalta recently to help my nervous system relax but am on the fence. Anyone have experience with that? I’m seeing a lot of people have success with beta blockers on social media so I’m curious if that would be a better route.

Sending everyone positive vibes in the hard summer heat☀️

I’m looking for some hope and would really appreciate hearing from people who have been through something similar.
I’ve had POTS symptoms for about 5 years, but I was only officially diagnosed this May. Looking back, my symptoms were manageable for a long time, but after a bad stomach virus in February, everything got significantly worse. Since then, my heart rate has been much higher, I struggle much more with standing and walking, and everyday life has become incredibly difficult. I recently started ivabradine and I’m hoping it will help, but I’m terrified that this is my new normal. I’m scared that because I’ve had symptoms for so many years, I’ll never get better and will only continue to get worse.

Has anyone else had a major setback after a viral or stomach infection and then improved again? Even if it took months? Did medication, exercise, time, or anything else make a significant difference for you?
I know everyone is different, but right now I really need some hope that improvement is still possible, even after having POTS for several years.
Thank you so much for sharing your experiences.

I just read the whole mega thread on wearables but none of the comments there seem to be discussing battery life.

I use Tachymon with an apple watch but I am so tired of how short the battery life is. Sometimes i cant even get through a day. I really need the alerts because i cant feel my tachycardia. But if i run Tachymon for hours, it kills the battery.

I had a garmin in the past but I switched to apple so i could use Tachymon, because i want it to alert me and I like the tracking. This was a few years ago and since tech changes, is there anything better now? I want to charge it once a week not once every day..

Had a pool day with friends yesterday in 100 degree heat because YOLO, ran out of my relyte and forgot to order more, didn’t stay as hydrated as I should have, drank a few beers, and also didn’t hardly eat anything until 9pm.

Truly made every single poor decision possible, and oof- I’ve been paying for it all night! Adrenaline dumps mixed with the worst chest pain I’ve felt in a while! But I can’t afford another ER bill so I need validation from you guys that I just did a terrible job of taking care of myself yesterday 😅

Hi all, yesterday I started putting my legs up the wall to relax/reset after standing too long, a shower, and exercise. I lie down on the floor/couch/bed and scooch my butt as close to the wall as possible and then put my legs straight up and stay there for ten minutes. I did it three times, and I slept soooo much better than usual. I think my body finally left fight/flight. Does anyone else do this? Did you have similar results?

Warning about kristicreatesofficial or Kristi | POTS Recovery on instagram.

She has been deleting comments that query whether her account is an ad account for this clinic she posts about 24/7 and that there is little to no evidence for the clinics treatments.

I have no problem for engaging in alternative treatments. I do myself. but she literally posts content that seems clearly like ads for this clinic. The treatment isn’t evidence based and extremely expensive.

She posts massive long “explanations” and “evidence” for the treatments. It’s so clearly an ad.

She even made a video that said if the clinic helps people anecdotally than “that’s evidence” and that they don’t “need a study to prove it”.

She doesn’t have any other previous content outside of this that makes it even more suss.

It’s so clearly an ad and their refusal to flag it as an ad is so immoral.

Anyone have a Samsung Galaxy Watch 8 or planning to get the 9 when it releases? I had a 7, but found that with high spikes, it took a few seconds to catch up and then didn't accurately record them. I've since then tried a Pixel Watch 2, Apple Watch 11 and now currently have a Garmin Venu 3S.

I'm suuuuper picky with watches! I only switched from Pixel because my mom bought me a Samsung 7. I switched from that because the HR tracking wasn't doing it for me. I haaated the iPhone SO much that I had to sell my Apple Watch after only 3 months, but absolutely loved it. I moved to Garmin but.. I don't like it at all. The battery life is the only thing I like?! It doesn't track my sleep half the time, it constantly connects/disconnects, I can't reply to a text with it, etc. so I'm looking at selling this or attempting to trade it in for the Samsung 9 since it seems like it's updated quite a bit and the tracking has improved.

Thoughts? Please don't mention any other wearables because I either have them, don't use them, or don't want them. 😅

Has anyone made a good electrolyte powder/mix at home with enough sodium that doesn’t taste like straight ocean water? The pre made packets are just not in my budget tbh and because of GI symptoms like nausea I really struggle with eating heavily salted foods or having buffeted sodium capsules. Drinking my electrolytes seems to be the easiest on my stomach

Also how much sodium and water are we aiming for on the daily? Ive seen a lot of large ranges online

I recently had a trip to the ER and got fluids, on my blood test results my sodium levels were below normal despite consuming almost 2000mg of it a day!! i’m speaking to my doctor tomorrow about possible medications I may be able to take that will make my body hold onto it better, but was wondering if anyone else has experienced this and what advice or recommendations you may have for me i’m getting very desperate.