Skip to content

Q&A: What Does Living with POTS Actually Mean Every Day?

Day 3 · 7:38:32 · Dean Allison · Crystal Denomme · Drew Taylor · Shawn Buckley

  • ⬆️ Any sitting or standing requires medical-grade compression, extreme sodium and constant effort to keep blood in heart and brain.
  • 🛒 Grocery lights, crowds and standing in line feel almost drunk; GI issues and food sensitivities dominate.
  • 🔄 Daily care-plan consistency is non-negotiable; any deviation returns vomiting, fainting and total shutdown.

Chair asks for a plain-language picture of POTS lifestyle impact.

← Q&A: What Has the Vaccine Injury Support Program Actually Delivered? | Noah Barclay Sworn: 23-Year-Old Fit Electrician Apprentice →

Transcript

Dean Allison · 7:38:32

So Drew, I, I wanna ask, uh, you know, you, you, you have POTS. Could you explain to, to people in the audience, like we've heard that term a couple times today. I mean, so just explain in terms of what it actually means in terms of lifestyle, in terms of, of what you can and can't do. I know you explained some of the symptoms, but just in terms of how it, how it, how it shows itself up to you.

Crystal Denomme · 7:38:56

Sure.

Drew Taylor · 7:38:57

So anything sitting up or standing requires effort. So essentially, if you have to wear compression to be out of bed, if you have POTS, it helps get the blood flow back from your legs back up to your heart and your head. So you have to wear compression and typically medical grade. The amount of water that you need is also very high in electrolytes and sodium. And this is also to help the blood flow back to the heart. So, a lot of us like myself, we need excessive amount of sodium. So, 10,000 to 14,000 milligrams for someone like myself who is constantly like without medication going to be fainting. So, for a normal person too with POTS, when say like this, the amount of sensitivities is, is pretty extreme. So someone with POTS can't just go to the grocery store, for example, like the lights are going to affect them, the people around are going to affect them, and then standing in line is going to affect them.

Drew Taylor · 7:39:57

You feel almost drunk, and I haven't had a drink since 2019. Uh, you feel the symptoms, uh, just having POTS. Um, you get really dizzy, almost like a— it can be the room spinning, but it can also just be like a general dizziness. And this is a, this is a chronic Symptoms. So most of us, I would say, have that. Um, a lot of us have GI issues. Uh, a feeding tube has been brought up by my doctor. I still have GI issues, but I have found, um, good protein. It's a vegan. A lot of us can only have certain foods every day, certain things, because if we change that, then we're back throwing up, we're back. So our regimen, as someone with POTS, like, it has to be pretty consistent. We have to absolutely do our care plan every single day, otherwise we won't— I wouldn't be able to even do this.

Crystal Denomme · 7:40:47

It—.

Drew Taylor · 7:40:48

Yeah.

Dean Allison · 7:40:49

Listen, thank you, thank you very much. Oh, good, Mr. Dalton.

Shawn Buckley · 7:40:54

Yeah, thank you very much for sharing your story. And, you know, I have to catch a flight here in a few minutes, but, you know, so I've been listening to obviously not all the different experiences people have been having, and it's heart-wrenching. It's heart-wrenching, I must admit. And I want to say thank you to MP Allison and Sean just for bringing this out, you know, because to validate what people have been suffering— and I think a lot more people are suffering than they even know that they're going through things, aren't even sure that, you know, what the reasons are. And so I just, uh, say, want to say thank you to yourself and to all those, everyone else that is here, even to tomorrow, that have, uh, you know, done, taken the effort to sacrifice the time, um, to, to come here to share this. And, and, and, you know, we want to get that, the message out and, and have a way forward and, and hopefully better, uh, you know, recompense also for some of these problems.

Shawn Buckley · 7:42:05

But again, just want to say thank you, and thank you to the host for hosting this.

Dean Allison · 7:42:12

Yeah, Drew, thank you very much.

Drew Taylor · 7:42:15

Thank you.