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Ginger_

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  1. 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
  2. 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.
  3. 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.
  4. 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
  5. 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
  6. 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?
  7. 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.
  8. 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.
  9. 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!
  10. 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.
  11. @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.
  12. 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.
  13. 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.
  14. 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.
  15. 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
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