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Taylor: Meds Every Few Hours, 14 g Sodium, Cane and Wheelchair Life

Day 3 · 7:29:40 · Shawn Buckley · Drew Taylor

  • 💊 Blood-pressure, heart and mast-cell drugs last only about three hours; she still faints 1–3 times weekly off them.
  • 🧂 Daily requirements include a gallon of water and 10–14 000 mg sodium plus full compression.
  • ♿ Short walks need recovery; events require a wheelchair and often leave her bedbound for a week.

Even optimized treatment leaves her severely limited and medication-dependent.

← Taylor: Dr. Raj Confirms POTS, Vasovagal Syncope and MCAS from Vaccines | Taylor: Massage Clients Showed Months-Long Bleeding and Clots →

Transcript

Shawn Buckley · 7:29:40

Well, I'm just— so, um, you're— you faint constantly? Like, this is still a problem today that you—.

Drew Taylor · 7:29:48

If I'm not on medication, yes. And unfortunately, I like—.

Speaker F · 7:29:52

I—.

Drew Taylor · 7:29:52

My medicines, I take them 3 or 4 times a day. They work for about 3 hours for me. So if I'm like, it's, it's difficult because if I'm, it's 8 o'clock and I'm still wanting to be awake till 10, I can't be on medicine because that's got to, they work until 11 and I can't lie down with them. So there's times where I'm like, okay, my meds wear off, but I still want to exist as a person in my house and I do faint. Um, I faint right now about 1 to 3 times a week. Uh, and this is generally when medicine has worn off. I To be able to not faint and to be able to speak with you even today. I'm on blood pressure medication, heart medication. I'm on mast cell stabilizers. I've had a gallon of water already today, and I require 10,000 to 14,000 milligrams of sodium to be able to keep the, um, my blood flow and, uh, hydration maintaining. Because when I stand, unfortunately, with POTS As you've heard probably today, it's our blood flow does not go to our heart and our head.

Drew Taylor · 7:30:53

So compression, salt water is the treatment alongside beta blockers.

Shawn Buckley · 7:30:58

Right. So just, you know, back to when this first happened, my understanding is, is in addition to like fainting all the time until they figured out your medications, you literally bedbound for a year, but you were also throwing up constantly.

Drew Taylor · 7:31:13

Oh, yes. This is actually still an issue. So especially for the first about year and a half, I was bedbound even after starting the plan with Dr. Raj. Like, this is not— these conditions, POTS, postural orthostatic tachycardia syndrome, is not an easy condition. It is very complex. And even Dr. Raj had said, you know, his patients are very— they're in line, seems, to heart failure, what we deal with every day. So yes, I was throwing up constantly. I'm now allergic, like I have sensitivities anyways. None of these are true allergies with mast cell, but I react strongly now to gluten, dairy, soy, sugars, preservatives.

Shawn Buckley · 7:31:55

And I just want to focus on some other things because we're getting tight on time. Right now, basically, if you're going to go outside, you have to walk with a cane. You can't go to the store without a wheelchair. I'm right about that?

Drew Taylor · 7:32:11

No, I can, I can walk right now as long as I have compression, as long as I am okay. But I am limited. So I can go for maybe a small walk and then I have to sit down and deal with presyncope. So if I'm walking for 10 minutes, that's fine. I can do that except then I have to sit down and deal with my heart pain and I still have to catch up. Like I have to, by catch up, I mean I have to recover. From any physical activity that I do. I've not yet gone to an event without a wheelchair. And typically, like, an event as in, like, if my, uh, like, there was a, um, what was it, Weird Al was in town recently. My husband had bought tickets a long time ago. We only got to the event and then basically had to leave. It was just too bright, too loud. But for us, even just, like, getting there is enough. Like, but before, I would have been able to enjoy the whole concert symptom-free, no problem. Now I leave an hour and a half early, like way too early, and for the next week I'm actually bedbound again because I chose to try to do something.

Drew Taylor · 7:33:14

Um, everything for me has a consequence, right?

Shawn Buckley · 7:33:18

Are you able to shower by yourself?

Drew Taylor · 7:33:21

I am, but I'm not able to shower without immediately sitting down still. And I do, uh, one of the fainting issues, one of the fainting episodes I had that was severe in my year. I actually ended up with my own little Harry Potter scar. I cut my head from the top of my head to the middle of my forehead. I don't know exactly how, but I was in the shower and fainted for that one. And it's still an issue.

Shawn Buckley · 7:33:45

When you, um, before your second dose, um, when you, when you were still doing massage therapy and people started getting vaccinated, you saw some changes And the main thing you saw was unusual menstrual bleeding.