Living with POTS

“Where’s Nikki?”

“Oh, she’s not feeling great tonight.”

“Oh, is she sick?”

“Nah, she just has a thing.”

—

“Hey, can I have about twelve packets of salt?” — me, at every restaurant

If you’ve been around me in the past year for any extended period of time, you probably have noticed some or all of the following: 1. I eat a ton of salt and drink a lot of water 2. I can be super spacey sometimes 3. I get a lot of migranes 4. I sometimes have to cancel plans because I feel icky (tired, dizzy, migranes, confused, any combination of these) 5. I make lots of jokes about 1-4.

However, I’m willing to bet most of you didn’t know any of this, because it’s easy to hide and I don’t talk about it a lot. I’m someone who loves to stay busy. I’m always on the go. I love hanging out with friends and meeting new people. It’s only really noticeable if you spend a whole day with me and see me guzzle water/ throw back salt, or if we’re close enough to hang regularly and I’ve had to cancel once or twice. Well, it’s time to talk about it. It’s a part of my life, but it’s not my life.

This time last year I was diagnosed with POTS—Postural Orthostatic Tachycardia Syndrome. What do all these words mean? Simply put, my autonomic nervous system doesn’t function properly so my blood vessels don’t constrict and blood doesn’t get back up to my head and my heart. This means that my heart has to beat faster to compensate to try to push the blood back up to where it’s supposed to be, rather than pooling in my extremeties (hands and feet, gravity pulls it down and my body can’t compensate). This is why I’m spacey sometimes- POTS takes blood from my brain, and without adequate blood up there, I’m a space cadet. (This is difficult for someone like me who prides herself on being intelligent and competent., so this has been a big learning experience). This also explains the headaches (not enough blood up there) and why I feel bad after exercising (I’m also the girl who ran for an hour every day freshman year of college, so this is a tough one. I love being active). The postural part means that if I’m laying down, my symptoms tend to subside (because laying down counteracts gravity).

What’s the treatment? There’s no cure. But there are a few things I can do. Science.

1. Drink a ton of water and take salt. Drinking water increases blood volume, which helps put pressure on my blood vessels to constrict. Eating salt (I salt my food and also just throw back handfuls of salt at a time. Travel with me- I carry a Ziploc baggy of it and have gotten some great looks from people when they see me take it out) helps my body better absorb the extra water. Once I took out my little baggy of salt at Disneyland (Katie can vouch for this), poured about a teaspoon of salt into my hand, threw it back and washed it down with water like a champ while three teenagers in front of me in line for Haunted Mansion stared at me in horror. Yo, this is the new drug. Want some, kids? (JK JK drugs are bad. But not salt). I also once did it at a coffee shop in front of the sheriff who had just walked in. He didn’t raise an eyebrow.
2. Sleep more!
3. Watch cardio. Stressing my heart too much makes me feel worse, but light exercise is actually a treatment, so there’s a fine balance.

How do I feel when I’m having a flare up? Tired, confused, headachey, spacey, sometimes anxious, heavy limbs, tingling extremities, or any combination of these. I normally feel the worst after exercising. The catch 22? I feel icky and have to lay down/ am bedridden for a few hours or the rest of the day. It mimics depression (and forces me to bail on social situations/ bail on friends), so it’s hard not to get down about it during a flare-up.

How do I feel otherwise? Pretty frickin’ normal & happy! My same old self. Most days I forget I have it, until I have a bad POTS day.

So what does this all mean? I can still live a normal, full life. However, it does mean that some evenings I’ll cancel my plans to go out because my gym workout knocked me out. Or some weekends I’ll have to bail on friends to rest my migraine. There’s definite FOMO that goes along with all of this- I don’t want to miss out. But I’ve also learned that I have to take care of myself.

What do I need? The support and understanding of my community. I’ve never experienced anything but this, but now that I’m meeting more and more new people I feel the need to let people know that this is a part of my life. My flakiness isn’t me making excuses about not feeling great to cancel plans—I have this thing, and that’s just life. I’ve learned that I need to love myself and take care of myself first, and the rest will work itself out. Laying down party anyone?

Peace and love, y’all ❤