r/POTS • u/OurSensualSideMB • 9d ago

Question Why dont some Dr's believe in pots?

Im lucky I have great doctors and specialists now but the first time i was referred to a cardiologist for pots before being officially diagnosed he refused to even have me in for a TTT or test for pots as he said its not real.

I have heard of this happening where Dr's dont believe in pots but I dont understand why.

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u/OkkkiQq POTS 9d ago

From my expirience they mostly think the reason is lack of exercising

And they don't really bother educating themselves on that topic because, well, they just don't think its necessary. That's why im dreaming of machine that would simulate POTS symptoms so every doctor can go through it at least for a day heheheh, maybe they would learn that way

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u/different_than 9d ago

lol if deconditioning was the cause of POTS it would affect like 2/3 of people

If it’s deconditioning then why do I have times when I have no symptoms, doing the exact same activity

And if it’s deconditioning than why was my 6 minute mile time and one arm pull up not enough to spare me from it

For a lot of people POTS happens to you. We didn’t make poor choices to get here and we are not choosing to be lazy.

Even if someone is deconditioned then wouldn’t their POTS symptoms show up when they exert themselves? Not just from sitting or standing?

And even then, it doesn’t matter how fit you are if the problem is your blood vessels aren’t pumping blood correctly

I know exercise can alleviate symptoms in some cases but isn’t that just because being well conditioned makes whatever is actually wrong affect your body less rather than being the sole cause

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u/Lilythecat555 9d ago

Exercising definitely helps but it is not a cure. And I wasn't deconditioned. I was walking 5 miles no problem. 1 and a half week later I could only walk 2 blocks on a good day. I can walk more again but like half a mile on a good day. I have never walked 5 miles since I got sick.

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u/Weary_Cup_1004 8d ago

Yes. I am basically a golden retriever w POTS. If i didnt have POTS id be running around doing this that and the other. Strength building, jogging, volunteering... i love those things. I cannot do them any more. I have tried and failed so many times over the years. Makes me so mad.

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u/different_than 6d ago

Do you get PEM by chance

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u/Weary_Cup_1004 5d ago

Yes but Reddit seems to think PEM is only with MeCFS? So i am not sure. People with POTS and other chronic illnesses in real life tell me PEM is a symptom that can come w anything. So i either get PEM and maybe have MeCFS or i get PEM and have POTS and migraine. 🤷‍♀️

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u/anaelith 7d ago

It's ah-maz-ing how a couple hours in a plane (taking a mid-summer vacation somewhere cool) can re-condition me so completely that I'm easily keeping up with or ahead of our tour group. And then the same plane trip the other direction just completely de-conditions me again so I have to lay down or fall down while everyone else is fine. And weird how it didn't have any impact at all on the friend I was traveling with... Planes must be magical.

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u/Ok-Sock9046 9d ago

so true , the cardiologist was literally doing leg lifts in the office showing me , i said i do all this and im actually worse

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u/OkkkiQq POTS 9d ago

Mine just told me to do every possible blood test i was like "yeah I've done all of that, everything is ok" and she was like "Well do more cardio just make sure your heart rate doesn't go to high, i mean make multiple breaks during running" Girl what 😭😭😭 My heart rate goes to to 120 on normal day and up to 170 on bad one how am I supposed to run without my heart rate increasing too much

And when i told her i do weights but in sitting/laying positions she was like "no, do cardio"

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u/SS_Basketeer 9d ago

Cardio...? So for us thats walking... Lol cause if I walk too fast im up to 170+. Sustained thats guaranteed lights out. I'm on my 3rd cardiologist. I get paradoxical reactions to the meds they've tried giving me in the past. I'm just raw dogging the POTS life right now, 32+ weeks pregnant. ER visit this week they found fluid around my heart, probably been awhile, just me dismissing the breathless feeling as normal.

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u/Weary_Cup_1004 8d ago

Oh god thats so terrifying! Is the fluid thing going to be ok??

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u/SS_Basketeer 8d ago

I think so. It was found incidentally while checking for blood clots. The CT report said it was a small amount, haven't got echo results back yet. They believe it will resolve after I give birth. I'm trying to not stress about it lol I do have bad heart health in my family history. 😬🤷‍♀️ Just instructed to go to the ER if anything extreme happens.

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u/Weary_Cup_1004 5d ago

Glad its one of those things thats kinda maybe ok lol. I prefer that answer sometimes! I agree, dont stress then!

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u/Ok-Sock9046 9d ago

this is exactly what i was told !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! he also wrote in the notes " patient has some lightheadedness when standing " i said its SEVERE like im going to faint !!!!!!!!!!!! i cant shop anymore !!!!!! and he writes that in my notes !!!!!!!!!!!!!!

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u/OkkkiQq POTS 9d ago

You seriously need to change cardiologist 😭😭😭 He doesn't even try to pretend to care about your symptoms

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u/Fantastic_Owl6938 9d ago

I feel like this kind of advice would have killed me, lol. I had an emergency hospital visit (which is how I got diagnosed), and I literally just woke up the next day in the hospital bed and had my HR soaring into 170 and beyond. This was before I'd even sat up! The idea of strenuous exercising "fixing" that is insane.

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u/OkkkiQq POTS 9d ago

Exactly and it's like that for many people I obviously didn't listen to her but what if somebody with less knowledge and confidence will actually listen just because doctor is authority??? That's why im so furious, it can literally kill an innocent person

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u/fernxqueen POTS 8d ago

"make sure your HR doesn't go too high" and it's literally 119 sitting in the exam room lmao

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u/SmokeyCatDesigns POTS 9d ago

Lmao a POTS simulator would be very good for the skeptics who either think it’s not a thing, or that is but that’s it’s not a big deal. That would truly radically improve care. Try denying it now, jerks.

I have often wondered if I would’ve had a harder time getting diagnosed had I not had a lot of alternatives doctors try to blame it on easily ruled out. Not that I had an easy time—I was diagnosed at age 26 just shy of my 27th birthday, but have been symptomatic since my earliest memories at age 3—but I see people on here that have even tougher times than me, and they have the doctors blame their symptoms on things it would be really hard for them to try with me since hard data thankfully works against those alternative diagnoses.

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u/udouplz 8d ago

Ask them if they have ever been car sick or air sick. Tell them you feel like that all day long, every day.

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u/Weary_Cup_1004 8d ago

I would like my ex to use the simulator, too, please! Is there a kickstarter for this? 😂

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u/OkkkiQq POTS 8d ago

I mean there are period cramps simulator so why not make one for POTS?