So ok i developed pots a year ago and my biggest symptom was high heart rate/ shortness of breath especially with activity. I’ve been struggling for a year with my activities, horse riding I only last 2 minutes before I need a break, during my heavy workouts I feel DEAD after one set cause my HR will be 170+. Going up the stairs 175 easy.. well my cardiologist gave me 5mg propranolol to take AS NEEDED before activity, I just took my first dose and came to the gym… MY HEART RATE ONLY HIT 116 DURING MY HEAVIEST LIFT OMFG like WHAT?! Is this how it feels to workout without pots? I’m so happy I could CRY guys omfg Will I be able to run again? INSANE I’m not done with my workout but I had to tell someone who understands my excitement cannot be contained rn

Nobody ever really told me this so I’m telling you, I still have POTS because I have hEDS and MCAS, but the roof of my POTS has decreased greatly, and is only day 4! I’m talking maximum at 121 vs 144 on a freaking normal day of waking up and going to the office.

I also think started swallowing the wrong way after a pretty damn bad pre syncope, after I got covid, I think I was trying to increase my water intake and made the switch in a way that I wasn’t conscious about it.

It’s been a while that I had like a dark cloud looming over me, incredibly horrible fatigue, increased pain, brain fog, and it was quite worrying me because why tf wasn’t I getting better? I had put on about 10 kg of muscle since my diagnosis 3 years before, I was tackling my vitamin deficiencies, I had treated my SIBO, I was treating my MCAS, so why the hell was my HR going up so much even while I slept?

Late on Friday night, I realized I was swallowing in two distinct ways, and the wrong way was not only increasing my hr, but overexciting my entire sympathetic nervous system, my lips were dry af, I wasn’t resting, my pain sensitivity was higher, my hr was way more variable, I was hungry all the damn day.

I was skipping the pharynx phase of swallowing which is probably the most important. For proper swallowing, you use the back muscles of your tongue which push well-chewed food or liquids up and behind, the soft palate creates a seal, and without breaking that seal off the liquid goes down.

The way I was doing it was just kinda throwing the liquid at the back of the throat just by the sake of gravity, and then activating the middle of the throat - cause otherwise you feel like you are choking - to push it down. Doing it the right way lowers my heart rate as opposed to increasing it.

It is the one thing that has changed my life in matter of HOURS and is dumb af, and I didn’t even know I was doing it. Proper swallowing should look like the throat contracts and goes up, vs expanding and going up.

I’m leaving some videos for exercises: https://youtu.be/mPxXZWjIFnc and a video that shows where the tongue goes (I’m unable to post ig links, so look on ig @ centrointegraldm

xx

Edit 2: I’ve created my own method lol to ensure I do this the right way. But basically, when I inhale I let in liquid slowly into my mouth, once my mouth has a nice amount of liquid, not too much, I press my lips together, I stop inhaling, tip of tongue is on the roof of palate and I do a fake swallow to create the seal and then I push the rest of the tongue up without moving the tip, and I do this while actively thinking of the back of my throat to engage those muscles, by moving the rest of the tongue up, I move the rest of the liquid up (it has no way to go cause I already close the front with my tongue) so I swallow and there it goes to my esophagus. But in this way my brain through my soft palate has already told my stomach liquid is going, otherwise is as if you buy tickets for a concert for 1m people but 700k entered through the back and you are confused af and panicking cause now there’s too much people and you don’t know who tf they are and why are they there.

Edit: I’m legit back to baseline from before I got covid the second time just by making this little change.

Hey all! Over the past month or two I’ve been taking 5 mg of creatine daily and it has drastically improved my symptoms, specifically my fatigue, recovery, and sleep.

As I said in the title, I would consult your doctor first, but I wanted to share this breakthrough in case it could help anybody who struggled terribly with chronic fatigue, physiological stress, and terrible problems with getting up in the morning.

My energy levels/high heart rate problems have improved to the point where I’m not dreading any time I have to stand up or walk around. I even have started doing low intensity exercise almost daily! This is a huge win for me.

I use an Oura ring to track my heart rate, sleep, etc… and my sleep has never been this good. I use a BedJet to stay cold at night and a tilted mattress for tilted sleep but creatine has helped so much more than those two attempts to solve my morning problems. I still am groggy in the mornings but I don’t wake up anymore feeling like if I get up out of bed, even very slowly, I will faint or come close to it. My Oura ring also has never seen me in a restorative state for more than an hour a day. Yesterday, I had 7+ hours of it!

I know creatine has side effects and it’s not for everybody, but I highly recommend asking your doctor if they think it could help you. I’ve never been more productive at work nor on time as frequently. I truly believe this is due to the 5 mg of creatine I’m taking daily along with constant hydration like I had been doing way before creatine.

Anyways, just wanted to share this in case it could help anybody else. Thanks for reading!

This is big. Raised my metoprolol dose today and feeling like I can do anything lol

I went to an amusement park with my family yesterday, and brought my cane with me, convincing myself it'd be fine. I was even sort of tempted to leave my cane in the car because I didn't like the idea of people staring at me (which I always feel like they do when I use it), but my partner convinced me to bring it with me. I lasted about an hour before I started seriously lagging and my brother went to get a wheelchair rental. The rest of the day was fine and I had such a good time! This morning I feel good and don't have the usual "hangover" feeling I usually do after a big outing. I was sitting, eating my breakfast and thinking "see, I didn't need the wheelchair at all, I feel fine!" before I realized that I feel fine, in fact, because I used the wheelchair!

Tagging this as an accomplishment because realizing that accommodations actually make my life easier does in fact feel like a small victory today lol

I have had POTS for a decade or so, as far as I can remember. My hippie/yoga friends have told me how important breathing correctly is, but I kind of waved it off. Then I found this video that explains how you should focus on the OUT breath, and how your diaphragm needs to fully contract with your out breaths: https://www.youtube.com/shorts/RtfhgxddRtc

I started intentionally breathing this way while watching my heart rate during a longer lasting tachycardia episode, and while my heart rate was still reaching high numbers at the top, it was also lowering down to high 80's every time I would breathe out in this method. I have never seen my HR do that, go down with out breaths and raise with in breaths.

I looked it up, and I guess that's a normal thing the heart does, and it's because the diaphragm is squeezing the heart when it contracts during the out breath. This also triggers relaxing hormones and stuff in the body. I think my previous way of breathing had been telling my body that we are literally in crisis 24/7.

Anyway, it's been a couple of weeks of reminding myself to breathe in this way a few times a day and I have been feeling a lot better. I still have episodes when I stand, but they don't last as long as they had been, and they must not happen as often because I've been getting a lot more done and feeling a lot more resilient lately.

ALSO, I have seen my heart rate go into the 70s, while I am awake, watching it with my own eyeballs (instead of looking at a reading from the night). It's crazy. I didn't think that was possible for me.

I hope this can help someone else!

Basically the title. I’ve (28F) had POTS, Fibro & Seronegative RA for about three or four years now. At its worst for the last 1.5 years, but back in December I started running, just on a whim. Just short distances on the treadmill with lots of walking breaks. Started with .5 mile, .75, 1, and now yesterday I just ran my first 5K (3.1 mi) on the treadmill! Albeit not terribly fast (30 min), but still a huge accomplishment for me personally.

My symptoms have drastically improved and this is the best my cardiovascular health has been.. maybe ever? I also do other cardio and work outs almost daily. (No weights, just varied cardio, pilates, yoga and abs)

I feel like this is a HUGE accomplishment for someone with these conditions. I also feel that my RA & fibro are going into remission. That’s likely also due to having removed my biggest stressors in life and going to therapy, easing my mental and emotional burdens.

I’d absolutely recommend incorporating substantial cardio fitness into your daily routine, if you haven’t yet! It’s made my POTS far less debilitating! 🥹 Thanks for reading & wishing you all good health. 💙

EDIT: Wow! I was not anticipating such an outpouring of love and support! As someone with very little support, friends or family, this means the world to me. I’m extremely overwhelmed with your kindness & how many of you felt inclined to comment your encouragement. Please know that you’ve all motivated me to keep pushing myself to see what else I’m capable of. I’m also extremely moved that so many of you found motivation in my post, I am so proud to have helped this little Reddit POTS community. All of my best to each and every one of you!!

Not sure how to flair this.
This is not medical advice, simply sharing a recent experience!

Recently I told my OBGYN about some bladder/urinary pain and discomfort. She told me about bladder pain syndrome and how the first step is to eliminate certain types of foods: spicy food, acidic food, coffee and alcohol. I don’t drink alcohol or coffee and don’t eat much spicy food so I thought it must be acid. Was thinking about how much acid is in my diet and I couldn’t really pinpoint a source.

Finally realized it’s because I’m constantly drinking flavored electrolytes supplements! Usually LMNT citrus. Had been doing one packet of citrus and one packet of plain in a big water bottle every single day for YEARS at this point.

Most flavored electrolytes use citric acid even if they aren’t citrus flavor. I’ve been only drinking unflavored electrolytes ever since and my bladder has been feeling MUCH better. Just wanted to post my finding to possibly help out a fellow POTSie. I wish I knew this earlier!!

Also: We talked about the possibility of a UTI and she tested me for one- it was negative

⭐️EDIT to say I had no idea about the RFK Jr thing. Good to know and I will be switching. Mostly using Redmond Relyte anyways since it’s cheaper and the only flavors I’ve found that I like are LMNT citrus and lemonade. Thank you to this subreddit for the info!!

This is not a substitution for medical care, please talk to your doctor if you’re having any of these symptoms. This is just for informational purposes. Thank you!

Ok so I was very recently diagnosed with POTS although I think I've had it since I was 13-14 years old (gets worse or better sometimes). I am 33 years old today and I just wore my first ever compression anything. I got the Supacore leggings. The most annoying symptom for me has always been crashing after every single lunch I have (no matter how high in protein, small in portion, big, carb no carb, doesn't matter) and today I had lunch and nothing happened!!!!!!

I am back at my desk and my brain is clear. My eyes aren't closing. I am not fighting the urge to sleep while also not getting to sleep.

I CAN WORK IN THE AFTERNOON.

But I'm also afraid to believe this is true and I keep thinking what if this is placebo, what if all my symptoms aren't real and I am just lazy and whiny although I know I'm not. This thing messes with your brain I swear. ANYWAY, THE REASON WHY I WANTED TO BE BETTER IS BECAUSE I WANT TO WORK MORE AND BE ABLE TO ACTUALLY ACHIEVE MY DREAMS and today it feels like maybe I can work more than the 2-3 hours window I get in the morning.

But also, I feel good. (I'm all over the place, sorry but I thought you guys would understand more than anyone).

Sending you all love and courage.

I’m not gonna give too many details but, I had gotten gaslighted over my POTS for years.

Specifically there was this one nurse who was so mean and dismissive toward me, and she got to watch me get taken out of her office by ambulance an entire year later. Over the exact thing she dismissed as nothing. And everyone knows about it too cause I made a big fuss about it at the time. Omg. Embarrassing for her..

Then, I got dismissed as a faker and a liar at the ER and I had to come 3 times via EMS before they admitted me. And I was admitted for a long time.

Guys. I got the top director of the ER to come to my room and personally apologize to me for everything. The biased documentation in my legal medical record got changed by her. And she validated everything.

The director of the fire department apologized to me over the phone and believed every word of my complaint and he agreed to take action against the paramedics who were biased and gaslighting.

It’s a whole thing. I was badly mistreated and I made the biggest fuss about it I complained to everyone I possibly could aboht everything and stood up for myself as best as I could despite being freaking gravely disabled and extremely ill.

I have been treated like a god damn princess at this hospital I swear to god. I am not letting a damn thing slide and people are taking me seriously once they realize that. Nobody is shutting down my voice.

Hi everyone,

Just wanted to share my update and celebrate. I’ve had a massive reduction in symptoms (probably 80%) in the last three months after addressing iron, b vitamins, and vitamin d as well as hormones and thyroid. I still have tachycardia but I went from basically bedridden to living a semi active life. I wish I had gotten these checked/addressed sooner. This is just my own personal story so I know not everyone notices improvement but I wanted to celebrate the win ☺️

Referencing this post:

https://www.reddit.com/r/POTS/comments/1lk48yu/im_going_to_cut_off_all_my_hair_because_im_too/

So I was all set to have a pixie cut, I even made an appointment. And then yesterday I took the trash to the can outside, went to the mailbox and carried some packages inside. It is like 95 degrees here with high humidity (Ohio). That was enough that I had to stop on our shoe bench and try to get my heart to stop hammering. Once I recovered enough I was in bed for several hours. Idk why that's what did it but I was just done. Like it had nothing to do with my hair but I was just feeling like my day to day is so crap, I don't need my hair of all things adding to my overall discomfort.

I am definitely up in my feelings and did put on mascara to remind myself I'm still feminine (I know I know). Oddly enough I'm the most concerned about how my husband feels, even though he's the one that buzzed it for me.

But I washed it completely for the first time in weeks. I finished my shower and just felt like... Am I done? Like it's over already? No 5000 steps after this? So yeah. Just need some time to get used to it and examine some weird feelings popping up.

https://i.imgur.com/kMYHh9D.jpeg

Edit: it looks cute with a hat! At least I have that going on until I'm brave enough to go in public without it

https://imgur.com/a/9RO8P0F

115 seems so low, showers (even sitting) are rhe worst for me usually. Super happy to see this!

An autonomic nurse at Mayo Clinic told me that exercise is basically the way out of POTS. It’s not a cure but damn she’s right it helps. I’ve just been switching between the CHOP exercise for cardio and some resistance band stuff just whatever I feel like my body can do that day and I stretch EVERY day. This is probably the longest I’ve gone without having a super bad day. The problem is not enough blood is getting to our brain, so it makes so much sense that building muscle would help! I have poor vasomotor tone as well so I need to exercise to build that strength up too. I didn’t realize how much I deconditioned and worsened my body by only resting. I rested when I felt bad but I kept feeling bad over and over frequently because I was resting so much, that when I did go to do something it was way too much for my body to handle because I was so deconditioned. I know there’s a lot of talk about how exercise can be bad and you don’t want to overdo it but the key in this whole thing is to build it up slowly at a comfort level to where you don’t over do it. You have to slowly get your body to be able to handle being up and about again. I’m not a doctor but this is what I’ve learned and in my personal experience it really is helping me a lot and I wanted to share.

I’m so proud of myself. It seems like 100 years ago my symptoms started. I was training for a 10k and was not a very fast runner at all when my symptoms started after an injury. When my POTS symptoms first started I didn’t know if I’d ever be able to run again.

Not being able to run anymore has been my biggest heartbreak and mental challenge. I literally went from not being able to take a few steps without shortness of breath and a racing heart, to successfully walk/jogging 2 miles today. This is literally my slowest mile time ever but I actually don’t care I’m so estatic. If you have any tips or stories about running with POTS please please please share them.

I made it 2 miles with an average pace of 17:58 and I did it in 35 minutes. Those are nightmare stats for any serious runner but i literally am overjoyed

I'm on a school trip to France right now, I don't even think this is about the wheelchair honestly. my mom has never cared this much about my pain. she once made me walk through the airport while puking and barely being able to stand because the wheelchair wasn't getting to the gate fast enough (it wasn't prepared because she wouldn't let me tell the flight attendant I needed one once we got off, literally covered my mouth when I was trying to ask.) my mom isn't on this trip. my teacher Ms. M is. she took me to our gate as soon as we got to the airport to request my chair for when we landed, because I told her flights trigger my flares. she checked in every hour every day to make sure I was still up and moving. she asked our group to take extra breaks while walking when I was feeling pain. and now, she's requesting me a wheelchair at the palace we are going to because it's a lot of walking. I can't even begin to express how overwhelmed with joy and gratitude I feel right now. I feel like I'm actually being seen and heard. that my pain actually matters to someone. when I told one of my friends how excited I was, she said "well I don't think you need one. you've proven to be fine so far" and my other friend immediately shut that down. not to her face, but privatly she told me that she knew just because I wasn't showing my pain on the outside didn't mean it wasn't real. I appreciated that. that's all. I hope this makes you guys smile too.

After almost a year I have become pregnant! Is there any advice that can help because I have POTS and PCOS?
Update
I went yesterday to get an HCG test due to still spotting dark brown blood. It came back today and it was <1. I’m absolutely devastated.

I can actually enjoy my shower! I can have a hot water shower without worrying about passing out! I wasn't dizzy, lightheaded, nauseous, NOTHING. Normally my showers are a race to the finish because I feel so awful, but none of that this time. I sat under the HOT water and enjoyed it. For all those who are resisting getting a shower stool/chair: GET ONE.

Just wanted to share here as i know many people who get cured or feel better leave reddit and dont share stories. but here i am telling you not to lose hope i have hyperpots since October 2022 and i never thought i will be okay or get better but i could say that almost 80 percent of my symptoms are gone. Flares now rarely occur. Standing heart rate increases than my resting by 15-20 which is almost the normal for anyone. i never took anything except betablockers and pushed myself to exercise and move as much as i can. i was active even when i couldnt bear it. the only two things that still flares me are nicotine and stairs. but now i could even walk for 5-10 KM which for me is a big accomplishment after i even couldnt move. Please have Hope dont give up its a chronic illness but it does and will get better by time if you are determined to get your life back 🙏🏻❤️

Finally had my last big cardio appointment today. My doctor was so nice and really took my symptoms seriously. He said he thinks the tilt table is barbaric and my previous test results along with my 30 day monitor were more than enough info for him.

I’ve been at this for over a year and I’ve finally found an awesome doctor that listens. He gave me some tips and prescribed me Midodrine. I’m starting at 5mg 2x a day. Any advice if you take it yourself?

I just had to share a win!!!!

If you do not already have a shower chair and have been pondering it/putting in off. Get the chair. Best decision I ever made. I just enjoyed a shower for the first time in MONTHS and I was actually able to scrub my whole body. I feel like a new person.

Edit: here’s the one I got! I didn’t want a hospital looking one - https://a.co/d/7q1HWEQ

Diagnosed with POTS 2 years ago. if you dont know what that is, basically your body forgets how to regulate blood pressure when you stand up. fun stuff. doctor told me to "avoid strenuous exercise" and I remember sitting in my car after that appointment just... angry? like my body already betrayed me and now I'm supposed to just accept being fragile forever?

No way!

Decided I was gonna run a marathon before 30. never ran more than a mile in high school. couldn't even walk up stairs without getting winded. but something about being told I COULDN'T do it made me need to prove everyone wrong

Started couch to 5k last january. that first run was humiliating. 60 seconds of jogging and my heart rate hit 180. had to sit on the curb for 20 minutes. some kid asked if I needed him to call 911 lmao. kept going anyway

The first time I ran 3 miles without stopping I cried. like ugly cried. my wife found me stretching in the garage just sobbing. she thought I was hurt but I was just... proud? its hard to explain if your body has never failed you

Training got serious around april. longer runs meant figuring out hydration and thats when everything went to shit. tried liquid IV first (the sugar crashes were BRUTAL). then LMNT which made my heart feel like it was gonna explode. spent way too much time researching why regular electrolytes werent working for me. turns out when you have POTS your body processes sodium differently and most brands have way too much

Found something with less sodium but better mineral balance. sel gris or something? french sea salt that has other minerals. started using half what everyone recommends. game changer but honestly the mental part was harder than the physical

There were so many days I wanted to quit. one time I passed out at mile 15 and woke up to some lady's golden retriever licking my face. her husband wanted to call an ambulance. I just asked for water and finished the last 5 miles. probably stupid but I needed to know I could

Chicago marathon was last sunday. standing at the start line I kept thinking "what if I collapse in front of thousands of people" "what if I cant finish" "what if everyone was right"

mile 18 - legs hurt but still moving

mile 20 - everything hurt but my heart rate was stable

mile 26 - could see the finish

4:32:17

Not fast. not pretty. but I fucking did it

My cardiologist is still confused how I managed it. showed her my training logs and hydration protocol and she just shrugged. sometimes you gotta bet on yourself even when the smart money says you'll fail

Anyway if you have POTS or any chronic illness and want to do something "impossible" - just start. figure it out as you go. your pace doesn't matter. just don't let anyone put you in a box

Like seriously. I need to wash my hair. Often. This was so fucking hard and it IS so fucking hard every single time (I did it though 🎉) ((a week after I was meant to and now I probably will be out for the rest of the day, but I DID IT))

This is half a rant half an accomplishment post, I didn’t know what flair to use

I painted a bookcase!!!! It took me over a week and I felt a bit rubbish doing it compared with laying horizontal but I didn’t think I’d manage it!

Compression leggings, electrolytes, doing it later in the evening and slowly and surely I managed it a small section at a time! A win to not have to pay someone and yet more chronic illness tax on not being able to do things like home DIY projects easily.

I’ve told other people in my life but they don’t really get the sense of accomplishment or being proud. Whenever I look at those shelves I’ll think - I did that!

I’ve been taking 5 g of creatine for the past 3 weeks and so far have been having a positive response from it. I think it’s helping me hold onto fluids, which has been a big problem for me even with salt tablets and electrolyte mix. Right now I’m drinking about 100 to 130 ounces a day and a lot of of my symptoms have felt better. I’m still dealing with orthostatic hypotension which I combat using waist compression if I’m going out running errands. I am also starting to exercise daily, using an stationary bike, dumbbells, rowing machine, treadmill. Just wanted to report and let you guys know what has been working for me (37M 6’2 215lbs).