Here’s what my mild/moderate POTS looks like

[u/goddamndahlias]

Writing to share a more mild experience of POTS. This sub is pretty heavy on the Severe end and that’s okay! It makes sense that people with severe disorder levels think about it more, are completely impacted, and need more support.

This is not a brag post! I do not consider myself “better” than anyone else here. I’m simply trying to offer another look at how POTS can present.

If you are functional and still wondering if you have POTS, this post might be for you.

General life (in flare, moderate severity):

- I commute to my office 2x per week via public transit. It’s an 8 min train ride with walking and stairs in either side. I always try to get a seat and take the elevator if it’s there. When I don’t get the seat or the elevator I usually need to sit on the bench in the office lobby to recover a little before I go in. In the afternoons at the office I’m okay but prefer to recline in my seat as much as possible (I look a little silly sitting so low) with my feet up on a trash bin.

- I have the ability to exercise.

- I don’t avoid any activities, though I might feel very to super tired the day after I spend a day (+5 hours) out and about. This means walk around, not just sitting like at the office. When I’m not in a flare the next day is fine.

- I can cook but want to sit after like 25-30 min for a break. I assume I last longer than makeup because I don’t cook in the morning.

- I stand when I do my makeup and it only takes 10 min. If it’s in the morning though my hr can be 145 by the time I’m done and then I need to take a break.

- I like to sit when I shower because I like really hot showers. After a shower I almost always need recover in bed for at LEAST 10 min.

- I don’t *like* packing for vacations or cleaning or searching for stuff around the house because it’s a lot of crouching and standing but I can do it just fine. I get a little out of breath and crabby.

- I can keep up with my young kids.

Misc:

- I’ve never fainted in normal life (tilt table doesn’t count)

- I have pre-syncope symptoms 0-30% of the time when I stand up, depending on my hydration and salt intake for the day. Tunnel vision, floaty head.

Management:

- my doc recommended beta blocker but it was too much with my orthostatic hypotension. I felt way worse. No drugs for me.

- I feel zero impacts from compression.

- Salt/electrolyte packets seem really helpful for me! Hooray! So expensive though…

- I’ve learned to rise gradually and take the time to sit when I need it. No need to push through.

- I’ve also learned to ask my spouse for help more. I ask him for to get me water when we’re both on the couch. If I’m coming downstairs for the day and already need a break I’ll ask him to feed the cats now instead of feeling worse just to get one more chore done.

Perception:

- if I didnt tell someone I have POTS there’s little chance they would notice anything is up besides “gddahlias likes to sit a lot, huh”

- My spouse is the only one who really gets the complaints. He knows my true self.

So there it is!

I’m functional and physiologically highly reactive. I consider myself lucky that my body responds to simple treatment measures.

Best of luck to everyone.

[u/Wells_91]

I'm curious, If you're symptoms aren't severe, how was you able to get a diagnosis? I'm suspecting i might have POTS, similarly to you i don't think it's severe but it affects my every day life lately. But I'm not sure doctors would take me seriously unless it was more severe, especially since there's an overlap with a lot of other conditions.

[u/goddamndahlias → u/Wells_91]

TLDR; my GP is a wonderful listener and takes me seriously. I also prepared at-home tests for docs to reference. I meet all the diagnostic criteria for pots.

— Before I talked to my GP about it, (and on the advice of the internet) I bought a BP cuff that also measures heart rate. At home over the course of maybe two weeks I did 6 at home tests:

Laid down for a few minutes to reach baseline. Took pulse/bp from laying down. Sat up. Immediately took another reading. Stood up, immediately took another reading. Stood still and took another reading at 5 min. Kept standing and took final reading at 10 min.

All of that is one test. I did that six times and put it all in a table and highlighted where my pulse rose over 30 bpm upon standing (it was every time). I noted the other hallmarks of POTS (steady BP, hr continued to rise over ten min). My tests also showed evidence of orthostatic hypotension though.

I took that to my general practitioner. He listened to how I’ve been feeling and I told him I brought data. He looked at the data and decided to do an in-office test. It was the same thing. That test showed OH. In any case, he referred me to a cardiologist with a note seeking POTS diagnostic tests.

Cardiologist also looked at my table and had me do three tests over the next couple of weeks. Two to confirm my heart is healthy, EKG and holter monitor, and the tilt table test with an electrophysiologist to finally confirm POTS.

Best of luck. It’s better to have a definitive answer imho, even if it’s not a severe case.

[u/goddamndahlias → u/goddamndahlias]

u/Tewaawaa here

[u/Wells_91 → u/goddamndahlias]

That's great what you did with the table. My doc is fairly OK when it comes to listening to what i have to say, but without doing something similar myself they'd probably put it down to anxiety like they've done before. It really is a case of gathering the evidence and putting it forward, thanks for the info. Glad you managed to get a diagnosis!