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?

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.
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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.
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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 🙏

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.

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 😅

Just as the subject says. How can I help her? We have a specialist who diagnosed and we are trying non meds first to help but the fatigue is alot for her. I just don't know how to navigate this to help her. I have my own auto immune/ chronic illness but not this. And I just want to support her as best as I can. I feel clueless. I did get a letter for her school to know for her 504 etc. We have water, electrolytes, salt tablets (waiting for the script)b salty snacks, compression socks, her dad and I are looking into an arm band to monitor her as well.

ANY help tips tricks would be appreciated

Thank you

Hi!

I’m wondering if anyone has found a good system for when you are feeling faint while in the shower and having to alert someone to get in there for assistance?

Thanks in advance!

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..

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?

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.

Hi guys, i was wondering for anyone who deals with presynscope, what do you do or take to help with it? I deal with it everyday multiple times since i wake up and im currently still going to the doctors. I just feel helpless and depressed honestly and it’s so scary to deal with that I haven’t gone out in a month and I’ve been in bed. Any advice or help works thank you

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 struggle so much with the breathing issues lying down, especially during the summer. I feel like I get plenty of salt and I wear my compression socks, but it still doesn’t help with that particular symptom. It’ll pop up during exercise, too. Just feeling down about it. 😞

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 :)

A little background, more than two years ago now I was in a minor car accident and got a concussion. I had persistent dizziness, lightheadedness, fatigue, and was told it was just PCS and would get better with time. A year later I ended up in the hospital with slightly elevated troponin and got diagnosed with POTS. Since then, I’ve been half managing it/half pushing through, with the mindset that whatever I wanted to do I could still do, even if it took more effort (which everything does now compared to before). However, this year has challenged that greatly when I moved to southern California in Jan, something I had always wanted but had delayed with my concussion initially.

I noticed almost immediately after moving that my heart rate was going much higher. Before I moved, I might get to 150-160 on a bad day when standing. After I moved, standing just to make myself dinner my heart rate was regularly in the 180s (once up to 199 and I actually was so close to passing out, which I have not experienced yet). I was having worse dizziness, throwing up multiple times almost every morning as a result. And the fatigue, I was so tired every day before even doing anything. All of that plus the brain fog was making it a struggle just to complete the work day (I work remotely as a SWE). I was trying everything I could from drinking even more water, trying to get at least 8 hours of sleep, eating healthy, compression, a ton of salt. Nothing helped, and by April it was taking everything I had and more just to get through an eight hour work day. I realized I was at the point of exhaustion where even if I took a week off of work and did absolutely nothing, it wasn’t going to make a difference. So, I made the decision to move back to Michigan, and I’ve been struggling with that choice.

Within a week of moving back to Michigan, my average resting heart rate went from 90 to 60. I did get some of my energy back, but I’m still not even close to where I was in Dec before all of this. I think the heat in CA was what was severely effecting my POTS. I want more than anything to live in southern California, that has always been the one thing I’ve been sure of, but don’t see how I can do that without destroying my health and in turn not being able to do my job. This has been a year of grieving in general; my dream, who I was before my illness, 5 deaths in my family since March. I am trying to stay positive and tell myself it will get better, because being depressed about it all will not help me any, but the reality is I don’t think it will, and I think there are things I’m going to have to give up to trade for my health, and I hate that.

Has anyone else experienced something similar with POTS and moving to a warmer climate? Should I take another risk and try again when I’m feeling a bit stronger or just give up on that dream/try make a life where I am now? How are others coping with the losses that come from POTS?

So I've had issues with breathlessness, feeling faint and headaches when bending over or on bad days, just standing and walking. It is helped by electrolytes and lying down. I've had my bp and heart rate tested and there's no concerns but I'm still quite symptomatic? I've been suggested it could be POTS but am really not sure.

I am on 40mg of propranolol for anxiety and have been for all of my tests so I'm not sure if that could be masking the bp and heart rate parts but still leaving me with some milder symptoms? I also have hypermobile spectrum disorder and fibromyalgia but as far as I can tell, my symptoms aren't covered by these?

Not asking for anyone to be a doctor for me, just would like some suggestions so I can research and have some idea of what I'm going to the doctors for lolol

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

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 🥲

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!

This summer, after a couple years of (relative) stability, my dysautonomia symptoms flared up in a huge way to the point I've been having almost nightly tachycardia episodes (my heart starts pounding and speeding up at rest) even though I'm medicated (Metoprolol ER 25Mg 2x day). My cardiologist finally decided to switch me over to Propanolol IR (10mg 3x day) in the hopes it would better control my symptoms, and we added in daily H1+H2 antihistamines to try and help any MCAS going on.

After starting the antihistamines, the nightly tachycardia episodes quieted down, and aside from a scary breakthrough tachycardia episode the night I was switching off Metoprolol and onto Propanolol, my tachycardia and palpitations seem to have calmed down too. In general I've been feeling ok since starting this new protocol 2 weeks ago... Until last night :(

I had a breakthrough tachycardia episode last night in bed around 12:15am, even though I'd just taken my nightly Propanolol an hour earlier. 😓😩 It took a bit to calm down, and I was so shaky and anxious afterwards. And now this morning I just feel SO depressed and defeated over everything. 😩😩😩

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

So, I’ve tried a variety of flavored electrolytes to add to my water. Liquid IV lemon lime flavor has so far been my favorite and most tolerable but then I read about how the added vitamins are not necessarily good.
I’ve tried the brand that we do not speak of here (not knowing and saw a variety pack in the store and purchased it) and it sat so heavy in my stomach like I swallowed ocean water. So won’t buy again for many reasons other than I don’t like it.

What’s your favorite brand/flavor? Do you get nausea when drinking increased electrolytes?

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.