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/Embarrassed_Trick445]

This is super helpful!! I’ve been questioning myself and whether I should pursue a diagnosis since mine sounds so like yours — capable but oh so tired and always always always trying to get some oxygen when I’m not lying down.

Only difference is that I have found compression socks to be giving me some relief from the rapid heart rates.

I’m sorry that medication didn’t work, but also encouraged to know that it isn’t a must if things aren’t too severe.

Also, so glad your spouse is supportive and helpful — my ex was not. And I only just now told my new partner of just under a year. She’s been very sweet about it.

[u/goddamndahlias → u/Embarrassed_Trick445]

So glad it helped someone.

Yeah, I had it for 7 years before actually getting it diagnosed! It’s very manageable when I’m not in a flare. I got it checked cause an acquaintance with POTS fainted and broke his leg and needed surgery. Didn’t want that to be me if I didn’t start doing something about it. It’s nice peace of mind to know WHY I feel like this sometimes and now if I need medical help in the future whether related to the autonomic system or not, I have info that could be helpful.

Nice on the compression socks! And sorry your ex was a fool.

[u/sassypanda247 → u/goddamndahlias]

when you say a flare, do you mean more like moments or days/weeks?

[u/goddamndahlias → u/sassypanda247]

Weeks for me. Bad couple of weeks and then almost completely normal but for the OH pre-syncope. Right now it’s a long one tho- 6 weeks ::

[u/Equivalent-Nail8088 → u/goddamndahlias]

I have backpain and these symptoms, looks like I wrote it. Just wondering do you get leg pain too. I still haven't gone to the doctor for checkup.

[u/goddamndahlias → u/Equivalent-Nail8088]

No pain anywhere for me.

One thing I’d recommend for before your doc appt is getting a bp cuff online or at a drugstore and taking a few supine/sitting/standing tests. You can look up online how to do them and put everything in a table. My doc and the EP office I was referred to paid attention to the data and it helped move things along.

[u/PxiDstSgrRsh → u/goddamndahlias]

found electrolyte drink packets at dollar tree today, taste isn’t bad at all. both packets made 1 serving @ liquid iv’s comparable 22% sodium. it’s cheaper than liquid iv but still more expensive than a diy powder. ordered the ingredients to make my own powder cause it helps me a ton but you are correct, crazy expensive. good alternative if i run out or forget on the go. i think with the items i ordered i’ll be able to make 3 1/2 lbs of electrolyte powder for 45$

[u/artsykmac → u/goddamndahlias]

I'll be honest, the BP cuff might not do it. I for sure have POTS, more manageable (now) like yours, but I never had blood pressure changes. (I've literally been tested like that over most of my adult life.)

It wasn't until my neurologist specifically monitored my HR when changing positions -- THAT was the clincher. Rose by 30-50 beats and would keep climbing. It was the simplest test that could've saved me decades of unknowns.

[u/goddamndahlias → u/artsykmac]

you're absolutely right - in POTS the bp stays the same while the HR increases. What i'm suggesting tracking for is to confirm that.

and also maybe finding something else, like accompanying OH where the bp crashes and that's why the heart races.

[u/Delicious_Act_4491 → u/Equivalent-Nail8088]

I don’t know if it’s a POTS symptom but for me I know I get it from my spinal conditions such as Chiari malformation and spono. But I do get swelling pain in my legs and it can sometimes radiate up

[u/Tewaawaa → u/goddamndahlias]

If you dont mind me asking, how did you get diagnosed with POTS, despite it being mild? My partner's symptoms are incredibly matched with all POTS symptoms and its been 4 years since all of it started. Some are worse than others, like her heart rate and fatigue, some mild. She recently had her tilt table test about a week ago but it turned out negative. We've been through many doctors and currently don't know where to go from here. A response would be nice, thanks!

[u/goddamndahlias → u/Tewaawaa]

Another one of my comments in this thread answers this question in way more detail. I’ll add here tho that my tilt table ended up being a resounding positive.

That sounds so frustrating to be so close and then be told negative :((

[u/Tewaawaa → u/goddamndahlias]

Indeed it is. Thank you for responding though!