Editor’s Note: This post was updated for accuracy on 4/22/19. Thank you.
If you’ve been living with severe Postural Orthostatic Tachycardia Syndrome (POTS) for some time, you probably know it’s quite a bear to manage. Even when it’s supposedly “well controlled” with medications, there’s never a moment that you can just let go and forget about it. Try as I might, I can’t seem to get this through my thick skull, though. Recently, I put myself out of operation for a day by trying to substitute my Oral Rehydration Salts for Potassium Chloride powder. Actually, it was the day after I was bragging about my boundless energy. That humbled me pretty quickly. When will I ever learn?!
Oral Rehydration Salts (ORS) is comprised mostly of various kinds of sodium and 1.5 grams of potassium. I thought maybe I could get away with only supplementing potassium if I tried to keep up on my salt intake since I use compression, take midodrine and florinef and the weather has turned, but boy was I wrong. It took a week and some pretty vigorous activity, but by the time I found my blood pressure cuff that day and took a reading, my blood pressure was down to 93/47 and it took me 24 hours and 3 liters of ORS before I could be trusted on my feet. The bad thing is, it took me a over 24 hours to figure it out. I just thought I needed a day off (and yes, I am rolling my eyes at myself, feel free to join in).
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It’s enough to make me wonder at times why I am even on all this medication if I still have to constantly supplement with ORS, but then I believe before I started on medication I had to drink 2 liters a day to keep my blood pressure up and I still fought with dizzy spells. While on the medication, I only have to drink .5 liter every other day to keep up sufficient blood volume. Of course the more compression I wear the better, so I always wear compression knee high socks and often when I’m working I wear spanx somewhere else on my body as well. Right now, I wear abdominal compression, but I’m buying some compression leggings to see how those do and plan on wearing them under all my pants, which are rapidly getting too big since I’ve begun to lose weight. Whatever it takes to keep me upright and energetic, right? If it helps me strike a better silhouette? Well, so much the better, in my book. Soon, I’ll be incased like a sausage 😀
But this idea of blood volume and electrolytes is important and it doesn’t surprise me one iota that a lot of POTS patients get weekly infusions. I honestly can’t imagine taking that much of my time and expense to get an IV infusion every week and personally I’m going to fight having to put in a port as long as possible, so I go the ORS route at home where I can mix it in a pitcher and down it, but it’s the exact same stuff. I’m convinced though, that there’s no substitute for it. You can take all the meds in the world, but you still need to replenish what the body simply can’t keep up with; electrolytes.
Medication isn’t the only thing that changes the amount of electrolytes you need to supplement. You also need to vary the amount of electrolytes you’re getting based on the amount of activity you’re doing, the temperature and the amount you’re sweating. It isn’t enough to just drink more water. You have to have sufficient sodium and potassium to build blood volume. The more I do in a day, even if I never break a sweat, changes the amount of ORS I need to drink. The time of year and temperature can also affect it and I find I drink a little less in the winter months. Of course the best way to stay on top of your electrolyte needs is to monitor your blood pressure regularly; a habit with which I’d become rather lax, obviously given that I couldn’t even locate my cuff. This was especially bad since I was experimenting with something new.
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If you don’t monitor or fall out of practice (we all get busy or tired of the health monkey), anytime you start to feel a little tired, low blood volume is the first thing any POTSie should be considering. When we get to a point where we’re actually feeling decent on a daily basis is exactly the time that we forget to supplement and that’s when the trouble starts. Once we start getting symptoms like dizziness, we’re well past where we should be with our electrolyte management. The first sign is actually fatigue and we should be responding to it well before we see symptoms like dizziness on standing, tachycardia or GI issues.