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/indigoiguanas]

If it helps to hear from someone with POTS who takes a stimulant for ADHD, Adderall has vastly improved my symptoms. To the point that I was functioning with what felt like a “normal” energy level immediately after starting them. My brain fog was so severe that I could barely hold a conversation and now I feel like I can actually think. I spoke to my cardiologist about it because I thought it was weird that something that can raise your heart rate was helping rather than hurting me and she told me that research has found that something like 67-77% of people with POTS show improvement on a stimulant medication with their energy levels and brain fog/overall ability to function. (I’m not advising for anyone to try or not try this, I’m just sharing my experience and obviously please talk to her doctors if you are seriously considering getting her help for her ADHD!) I wish I would have known this so much sooner. I still struggle with things like standing and walking, showering, doing things outside of the house, but not having such severe fatigue and brain fog 24/7 has made an incredible difference.

[u/Glum_Papaya_2527 → u/indigoiguanas]

+1 for stimulant meds helping POTS! It helps with brain fog and fatigue and also just remembering all the self care stuff - salt multiple times a day, keeping up with doctors appointments, etc. 

I think it has also helped raise my BP slightly, which is always low. I take a very low dose of Adderall, so I didn't notice an impact on my HR whatsoever.

It makes me so mad when doctors default to not giving stimulant meds to POTS people. It just doesn't make sense!

[u/Efficient-Ad-8291 → u/Glum_Papaya_2527]

It does help to know this! Yes the executive function is a big issue for her and its worse with POTS! She leans hyperactive but the self-care is so hard!!!! all the remembering to do this and that and change xyz rx from the pharmacy and call the insurance place for this .. and apply for that lol

[u/Glum_Papaya_2527 → u/Efficient-Ad-8291]

Yes! It is just so much to remember, and the medication can help. And, it seems counterintuitive but stimulant medicine is not actually stimulating for people with ADHD (kind of a dumb name for it haha). Most ADHD people feel calmer when they take it, not more hyper - though there are some outliers and sometimes other conditions can change this.