Ginger_

I only check my HR if I’m feeling symptoms or just did an exercise and am comparing results to what I used to have. I don’t find that it causes anxiety for me. Sometimes I will go by number if I’m feeling better but my number is still high I’ll hold off going to the next exercise but otherwise I go by symptoms and not numbers 99% of the time

hello! have you tried contacting a dietician or nutrition coach for help? often doctors are not well versed in nutrition and it can be best to reach out to a specialist. it is common in those who eat so little to have problems with weight. the average adult has a basal metabolic rate that needs 1200-1500 calories daily depending on age and body composition. eating less than this can downregulate the metabolism as the body thinks it is starving. this can lead to high cortisol as you mentioned which can affect blood sugar, water retention, and weight retention. the calories you DO consume the body will hold onto and store because your body thinks you will starve to death otherwise. a downregulated metabolism can affect the thyroid as well as the thyroid produces the hormones responsible for metabolism regulation. i personally would avoid extremes of either high or low carb diets if I was in your situation and make sure that I was balancing what I do eat, making sure to have protein, fat, and carbs at every meal + snack.

i don't eat a specific diet, just as many whole, minimally processed foods as possible. I simply eat in moderation. too much highly refined sugar like a smoothie made from the fruit purees have so much added sugar I know I can only drink part of it or I will have a higher HR. Similarly, I avoid excess caffeine. 2 cups of caffeinated black tea is my limit unless it wasn't full strength. even just 1 cup of coffee is so much more caffeine I feel terrible after having it increased sodium and hydration of course. its all about balance.

Yep—if I’ve had too many carbs and too little fat and protein I’ve had this happen. It’s a fine balance ive dabbled with macro tracking and it seems like 35ish grams of carbs paired with around the same of protein is safe for me. If I’m eating that many carbs I really need a good chunk of protein to handle it well

Depends on if I overdo it or not. Today I was back below 100 after 15 minutes once the workout was finished. Usually it is faster though. I have POTS so high heart rates are common for me, the duration just gets prolonged to varying extents when I overdo it. My doctor did say that things can and will worsen if I overdo it, unfortunately it can be trial and error to figure out what exactly is overdoing it

So I was at the gym doing my PT, had a new workout to try and it just ended up being too much. HR went back to its old ways hitting 193 high and a 159 average (my new average is closer to 140). Took a while to bring my heart rate down, went into my zone out survival mode on the couch and could just feel the inflammation. Ended up using ice packs to help cool down which helped inflammation greatly and hydrated a bit with some Gatorade, still down a bit. anyone else basically shut down to survival mode when you’ve overdone it? And any tips/tricks for recuperating?

I’ve been lucky enough to never struggle with sleep quality. I often fall asleep within 20 minutes of laying down and sleep straight through the night for 9 hours. i do find that with caffeine beyond mid afternoon can affect the time it takes to fall asleep, taking an extra half hour. Being on my phone (even in night shift mode) will also prolong how long it takes for me to fall asleep. recently I found I can tolerate melatonin supplements (2.5mg) and I will sleep even more soundly with that. Initially I could not tolerate melatonin at all, it would exacerbate POTS symptoms quite drastically, but my diet has since changed for the better and now I can tolerate it.

I’ve had POTS for roughly 15 months now, greatly improved with salt and exercise thankfully. I am wondering if i have another condition on top of it, perhaps autoimmune. I hadn’t been sick with anything since jan 2020, till September of 2022. Caught a random virus from a friend, a month later i got covid, then on christmas came down with pneumonia (mild case). While on antibiotics i developed white spots *in* my tonsils, which were swollen, and they have persisted since. And a rash developed in the jaw lymph node area. Negative for strep, EBV, Cytomegalovirus, Herpes. Tried another round of antibiotics, stronger ones and prednisone, swelling came down some, white spots are still there but greatly reduced. All bloodwork was initially normal in january, then a month later white blood cells were low. Went from a solid 7 to a 2.3. wondering if something autoimmune is going on since i usually am not sick this frequently. I occasionally do get flushed cheeks, today it looks somewhat like the lupus butterfly rash. i’ve heard there are correlations between pots and lupus or other conditions.

I haven’t cured mine by any means, but i can say peppermint tea lowers the heart rate A LOT. it can bring my HR to stay 55-70 for several hours (before i started salt i would do this before work bc that’s where i’d be really symptomatic, and it would help a lot). I think you have a much worse case than i do from what i recall, but salt, hydration, and physical therapy are what have helped me greatly. Best of luck to you!

Thank you! Yes! The PT is giving me a list of all the exercises. It’s amazing to me how much of an effect it had. i had another win today! there is a specific flight of stairs that always makes my HR hit 155-170 and today it only hit 120! My heart was pounding for a few minutes as per usual but I haven’t done that well in so long.

@Pistola little update for what its worth i started pt about a month and a half ago, loosely going off the chop exercise program (it wasn’t one designed for kids but all pots patients) but not at the same time lol. Most exercises are laying down or seated atm, and some kneeling are starting to be added in. The improvement is drastic, I actually had a period of about a week i only had symptoms once or twice, and i’m not feeling palpitations to the same degree if at all when strength training. Stairs are still my enemy, but i feel great when doing basically everything else! i even forgot to take my morning salt dose one day and worked a full day with zero issues. currently i’m on a 4 lead heart monitor for 30 days (todays day 3) for getting a second opinion. The past two days were my most symptomatic as i was very active, but i didnt have to stop working at all which would happen previously. I’m also finding people who are actually interested in helping me and researching pots to better help me which is amazing.

Thanks for the feedback! to be honest when the doctor recommended it, he didn’t explain his reasoning much. The script even just says to treat POTS. I have no injuries or range of motion issues, mainly just intolerance to exercise. I imagine this is mainly to help circulation to build up tolerance and stamina.

My cardio just referred me to get PT and I have the evaluation appointment Monday. The therapist I’ll be working with does have experience with treating POTS patients. What’s are some of the questions I should be asking? And general expectations? I should note I’ve never been to PT before so I don’t know what to expect.

Ah that’s fair, I’m not sure if ours have been done yet. interestingly I haven’t had a flare with it so far, quite the opposite in fact. My HR has stayed the exact same walking around the house or while making the bed, when previously it would go up a noticeable amount with those activities.

it's the time of the year again where i can't tell if this is allergies or a cold coming on. i know pots can flare with viral illness so any tips for preventing that or making it easier? i don't have a severe case of pots but I'd rather be safe than sorry with basic precautions

No they weren’t at all. Interesting, I didn’t have any triggers that could’ve caused it which was the weird thing. I’m wondering if it is Raynauds as it runs in my family

I’ve just had the strangest occurrence. Both of my ankles on the outer sides feel like they are burning from the inside. At the same time, my feet are very cold and have some indescribable sensations. I haven’t done anything strenuous to cause it. I just elevated my legs to see if that helps, so far no improvement.

I’ve been having this issue as well. When climbing stairs (more than one flight of 8 at a time) my HR can go from 75 before, to 165-175 during/after and sustain being 40+ bpm over the resting starting rate for several minutes. It’s quite annoying, is there anything to help calm it? I’m not de-conditioned so it doesn’t make sense. I can swim 500 yards at a fast pace no problem, avg HR of 155 peaking for a moment at 165-170, yet on stairs it goes higher. Does anyone else have similar? It seems like the horizontal position with swimming really helps, it’s just crazy the difference in intensity and the results.

Good to know! I’m currently in the phase of trying to figure out what my triggers are. Seems like I can’t have all three factors together. My doctor didn’t want to do a TTT as he doesn’t see them as 100% reliable. He was leaning towards it being POTS, as was I, and he had me greatly increase my sodium, my water intake was already what he was going to recommend. So far I’ve responded well, it’s maybe once or twice a week now I’m having a bad day. thank you for your help, one other question I have is how do you figure out if it’s regular POTS, HPOTS, or another sub-division? There doesn’t seem to be as much information out there on the sub categories as there are for POTS as a whole.

Hello all! I’m fairly new to the world of POTS. I started to have issues back in December, and in July is when my cardiologist finally said he thinks it is POTS and started treating me as such, leading to much improvement. I just have a couple questions :’) is leg pain in the calves/ankles normal? Unless I do something strenuous I formerly wouldn’t have this, but I find lately after a normal day my calves are tight for several days at times. Can pots lead to overall joint pain? Can caffeine affect you at times but not always? I was sitting around for a Bible study last night, totally relaxed enjoying the discussion, and I went into tachycardia (100-115bpm but symptomatic with cold hands and feet, numbness in hands and feet, and sweating on my hands) for 30 minutes or so, then it subsided, then came back upon standing and moving around. Squeezing my calves was what ended up helping in the end. I had had some iced tea before going with a mild amount of caffeine, but I’ve been perfectly fine with the same tea before. Can caffeine intolerance come and go? I’m wondering if it could also be that it was paired with pizza which is higher in carbs.

i haven't tried it, however I have heard this is an actual thing. I believe doctor mike on youtube has a video that touches on this. it isnt as beneficial as the full 7-9 hours but you arent getting that anyway. might as well make good use of the time :') whenever I wake in the middle of the night (rarely) i do the same

Why is that? Most of the time I do have symptoms I’m moving around. My cardiologist hasn’t said anything that it would be of concern, and another physician only presses to know how long each symptomatic episode is.

Totally! I used to get chest pressure/tightness a lot, it’s starting to be much less frequently (thank God!). I don’t know why it’s getting less frequent but it is 🤷🏼‍♀️. I’m a fairly new potsie, so I’m not super knowledgeable on flares. On a bad day I have to take a break from working or whatever I’m doing to get my HR back down, put my feet up, and hydrate even more than usual. i hope you feel better soon!

melatonin is an absolute no go for me. i tried it due to having caffeine and wanting to sleep through the night so i would be refreshed for the next day which would be long and busy. I woke up in the morning having a terrible pots flare, my heart rate was high and wouldnt come down with standing and the neuropathy in my hands and feet came around, which only happens on very bad days.

Loratadine aggravated my POTS a ton. I took 10 mg daily and my HR would spike while simply reading or doing paperwork, I would have chest pain, and the rhythm was not normal. Once I stopped taking it I saw such drastic improvement that I generally only have a pots flare from large postural changes or exercise. My heart rhythm went back to mostly normal without it.