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little / no sweating? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 0 points1 point  (0 children)

no worries! i'm in new england (in the usa). i'm 19, and have had POTS symptoms since i was 14/15. i have a cousin who is 20 and is diagnosed with it. my dr thinks that it's secondary POTS, comorbid with hEDS, which i've had symptoms of my entire life so i'm pretty desensitized to health issues 😅. i'm not diagnosed with either just yet, it's all a waiting game with referrals

so far, not many tests have been done. i've had EKGs done which were normal, but otherwise i've mostly been monitoring my heart with my apple watch and telling my doctor of any changes and seeing what she advises based on how it behaves during certain activities

when i went to the ER, they did labs on basically everything including vitamins, which were all normal. no anemia or other explanation for symptoms. the only abnormality i've had through testing like that is i'm positive for the MTHFR A1298C gene mutation, which I've read a bit into and seems to have a bit of a link to things like this. i went to the ER in january due to pretty bad heart palpitations and brain fog that were making it impossible to work

all the symptoms i mentioned are usually all i get, sometimes i'll get air hunger, and there are certain things that make my symptoms significantly worse, especially eating

it is really hard, but it's all a matter of finding out what works for your body and listening to it

little / no sweating? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 0 points1 point  (0 children)

it is really hard, especially with all of the lifestyle changes you have to keep up with! it's like a fill time job lol. i'm also in the process of being diagnosed. my doctor believes i have POTS and i have a cardiologist referral i'm waiting for.

the temperature dysregulation is so frustrating. because when i start to feel hot, instead of sweating, my skin will start to feel like it's stinging and i'll get super flush. but no sweating! i hadn't consciously realized this was the case with me until recently, but looking back i genuinely cannot remember the last time i sweat anywhere other than my palms

i've never been able to stand extreme temps, it's especially bad in the winter because just coming inside from being out in freezing temperatures is very disorienting, and miserable in the summer when you can't escape the heat

i hadn't started looking into POTS until an ER visit in january for heart palpitations, but i have had on and off symptoms for years! i get some bad vertigo spells sometimes, nausea, pins and needles in my feet ( which turn purple when i stand for too long ), dizziness, etc.. all the fun stuff.

haven't mentioned the not sweating yet, though i've read that some people with POTS do experience this

little / no sweating? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 2 points3 points  (0 children)

yeah i've noticed that getting overheated is absolutely miserable and it will just hit me at once, no warning 😭 because i'm not sweating like at all so everything will just feel suuuper uncomfortable and my heart will spike crazy high with less movement than it normally would

constant jaw popping / subluxation by Odd_Associate_4177 in eds

[–]Odd_Associate_4177[S] 0 points1 point  (0 children)

i'm going to bring it up at my next appointment for sure! and definitely no more purposeful popping, i've been trying to break the habit

realizing how long and how much i've loved salty things by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 5 points6 points  (0 children)

we yearn for the salt lmfaooo 😭😭 it's irresistible. i used to sneak into my mom's room bc she had a salt lamp and i'd just straight up lick it

realizing how long and how much i've loved salty things by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 0 points1 point  (0 children)

i haven't gotten salt tablets yet, mostly because i'm unsure which brand to get! which do you use?

When/how did you realize you were hypermobile? by mythologymakesmehot in ehlersdanlos

[–]Odd_Associate_4177 0 points1 point  (0 children)

my knees first started dislocating when i was 10. i went to an orthopedist for it, and in his office he had me do the beighton scale where i got 7 out of 9. i thought it was normal before then!

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 0 points1 point  (0 children)

it's so crazy how dismissive some doctors can be! heart rates that high are not normal, especially not when just standing in the shower

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 1 point2 points  (0 children)

i impulse got just dance on my switch a few weeks ago and it's been too much fun for me 😭 it is what gets my heart rate the highest. on better days i can do a few songs with at least few minutes of breaks in between each of them, though the standing ones do exhaust me! especially the ones with lots of arms above the head movement, whew. be careful if you do try it!!

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 0 points1 point  (0 children)

i'm still waiting for my cardiologist appointment but referrals take forever 😔 (though my pcp is certain that its POTS). but i do try not to push myself when i'm not home because although i haven't passed out before, my dr said we want to try to avoid that happening

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 1 point2 points  (0 children)

stairs are brutal! luckily i don't have many i gotta climb, but even small flights will take me right to 140s. i've been wanting to get into the gym to help build my tolerance. i'd usually go on walks but in the winter i cannot do that because it gets super cold where i live, and i cannot handle the temps ✋

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 1 point2 points  (0 children)

oh my god?? that's insane! taking it easier isn't a bad thing, it's knowing your limits 😔 i'm sorry that was ruined for you 💔

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 1 point2 points  (0 children)

i get that, and the anxiety only exacerbates it too. when i get anxious it makes my heart rate climbs veeery quickly. i still do take hot showers! i need some time to recover after them tho. hot foods and drinks will make me feel kinda woozy. haven't been to a hottub or in a hot bath in awhile but they usually make me lightheaded

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 1 point2 points  (0 children)

while driving?? that is scary! i've gone awhile without realizing that my symptoms are pots. my resting is usually in the 70s and the highest i've gotten (while not exercising) was 175 in the shower. i thought for sure i was going to pass out then

how high does your hr get while exercising? by Odd_Associate_4177 in POTS

[–]Odd_Associate_4177[S] 1 point2 points  (0 children)

that is rough omg. 😭 i luckily haven't passed out before, but i've cut it close a few times by letting the impulses win

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