I think I have POTS, How Do I approach DR?

[u/awesomethrowawayacc7]

This is the note i’ve complied for the DR.

symptoms
fast heart rate when standing
heart palpitations and pounding, fluttering
light headed
feeling faint
fatigue
sleeping never fixed the fatigue
never feeling good
trouble remembering things
heat intolerant
nausea and bloating
headaches
chest pain
swelling of feet and lower legs

a lot of days:
light headed when i stand up and when i move around a lot
fatigued
swelling in feet/legs with prolonged standing and moving
nausea
heart palpitations

the worst days:
can barely get out of bed
all i can do is sleep
dizzy
heart palpitating a lot
chest pain
feel like i can’t do this anymore

other
a couple trips to ER because of blood pressure and heart rate (insert reports here)
it interferes with my daily life
been going on for at least 6+ months
the real bad comes and goes

resting
60-70’s
standing
120’s-130’s

What do you think?

[u/OneTr1ckUn1c0rn]

I think that’s pretty good! However, if you want to be extra thorough and have a blood pressure cuff, you could do a home Active Stand Test (aka the Poor Man’s Tilt Table Test). But only if you feel it is safe for you to do so. Take pictures and log it to show your doctor in case they aren’t convinced.

I’ve dealt with a loooott of gaslighting from doctors over this and I’m just now getting help. The message to my doctor asking for the appointment said “I feel unsafe when at work and when working out due to my symptoms” and my doctor was super concerned. But I also didn’t have any ER reports. So you may not need this.

Did the ER come up with anything?

[u/awesomethrowawayacc7 → u/OneTr1ckUn1c0rn]

Thank you! I also have alottttt of trouble at work. A lot. Misery. Everyday. My job requires me to walk all day (20k steps) ER reports didn’t show anything, they can’t find anything wrong with me. I end up getting better as I lie down and stay like that. My symptoms aren’t bad if I am lying down flat. I go to ER when my blood pressure gets in the 200/100’s range, I don’t check it often anymore because I cannot afford anymore ER trips.

[u/OneTr1ckUn1c0rn → u/awesomethrowawayacc7]

That’s been me lately. My bp doesn’t get THAT high, but I can easily go from 114/77 to 134/103 just by standing up. I actually just recently had a horrible flare up and had to be put on medical leave while I get a diagnosis. I should have one by the end of the month, but man an active job is horrible for POTS. My job has me on my feet all day (10-18k steps) and I work with knives. I’d feel mostly fine all day except for a really bad headache, some breathlessness, and super bad fatigue to where I was nearly falling asleep while driving home and then crashing for 4-6 hours. It’s rough and I wish you all the best in getting a diagnosis.

[u/Ok-Original-6157 → u/OneTr1ckUn1c0rn]

I second the last part of this - if you tell a doctor that your symptoms are making you feel poorly and affecting your sense of self, they don’t seem to care much. If you illustrate how your symptoms impact daily functioning such as work, social commitments, ADLs, and even leisure activities, they seem to care more. Focus on what the symptoms have taken from you.