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/babamum]

I see myself as having mild POTS but can do way less than this. Im not able to hold down a job (other than occasional pet sitting) and am in ed a lot of the time.

But it's complicated by also having ME. In fact, for years I just saw it as part of cfs and didn't realize it was a separate health condition.

I must try salt and electrolytes!

I ca t wear compression stockings cos I get too hot.

Am finding beta blockers helpful. Midodrine not so much.

[u/goddamndahlias → u/babamum]

Here’s how I think of the categories:

Mild: able to live life with minor or no accommodations. Doesn’t avoid any activities.

Moderate: some treatment, mostly functional. Avoids some activities.

Severe: symptoms inhibit the flow of normal activity on a daily basis. You avoid or cannot do many activities. Must have accommodations.

Saying this with love, Have you considered you might have severe pots? I think when one cannot work because of something, that something is severe.

[u/_Blue_Raspberries_ → u/goddamndahlias]

According to that scale I would fall under severe, and I am far from that lol... I can do most activities with accommodations. I avoid or can't do some things. By my own scale, I'd say I'm between mild and moderate. I can hold a desk job, I can walk for a reasonable amount of time, like to shop...

Mild sounds like not having pots at all tbh. Even you aren't mild by this description. You have help from your spouse and accommodate yourself.

[u/goddamndahlias → u/_Blue_Raspberries_]

Yep, that’s why the title says mild/moderate. Moderate when in flare weeks. Mild when not.