dysautonomia / POTS + electrolytes

I’ve begun the process of a proper Ehlers Danlos diagnosis with a specialist here in the Seattle/East Side area, and as part of that process, they also ask questions/diagnose for issues commonly paired with Eds, Pots and Mast Cell Activation Syndrome.

Once I’d begun reading up on POTS (postural orthostatic tachycardia syndrome), I absolutely knew that I have it. I got dizzy all the time a a kid, and was repeatedly told I should make it a habit to stand up slowly (because I always got dizzy and woozy every time I stood up).

I’ve always had low blood pressure and, though I am physically active, I am not the type of athlete that should have a resting heart rate under 45bpm. Conversely, my heart rate can spike pretty quickly. I’m always tired, often foggy-headed, and never feel rested even if I seemingly get a full night of sleep. (As an autistic person with ADHD, sleep will always be an issue—but I never feel much different if I get 7 hours of sleep or 3.) I’m prone to feeling like I’m going to faint, on a bad day, but several times a day, upon standing or walking, my vision gets blurry and dark around the edges for a few moments.

I frequently get “brain fog” (and always have), I sometimes have heart palpitations, I’ve had occasional night sweats since I was a kid, frequent low-grade headaches. I’m usually running hot, but will occasionally be too cold (and then ping pong back and forth between the two). I have what I refer to as “attacks” of the digestive sort a couple times a year (intense cramping and pain, turning white as if all the blood drained from me, sweating, nausea, etc. that all passes after a couple hours). Discoloration of my extremities, shaking (sometimes after intense exercise or just walking a few miles, sometimes after adrenaline surges), and on and on. These are all symptoms of POTS.

My symptoms, the effects of POTS, have actually been far better in the last several years than when I was younger. That’s because I had naturally come to the conclusion that to not be in pain, not have horrible brain fog, and to move past a “5” on the “how do you feel on a scale of one to ten, one being terrible and ten being great” scale, I must move every day (walks, run bike, strength training) I must drink a lot of water, I must snack/eat small meals throughout the day. I’d also mostly stopped drinking alcohol years ago (save for a couple glasses here and there in the Summer or when we go out for dinner), I’ve eaten a primarily plant-based diet since I was twelve, I don’t drink anything other than water and my one morning cup of coffee, and I’m a probiotics-taking champion.

But for the most part, I still always feel low level crappy. Once upon a time, during my yoga days, I tried elimination diets, I tried cutting out dairy and gluten, I tried giving up my one cup of coffee, and on and on. I just got used to feeling “meh” and tuned most of it out. There’s a part of me that doesn’t want to get my hopes up… yet I’m excited to be finally figuring all this stuff out.

My “treatment plan” thus far involves drinking electrolytes every day. High-powered electrolytes that come in medical-looking packets, marked “only use with medical supervision,” that are dumped into 32oz of water. Every day. (I was warned they would taste salty, but so far it just tastes like really crisp, clear water.)

I’ve been doing more reading about this, and there are numerous forums and articles (by doctors and from people who also have POTS) about the importance of sodium for people with POTS. I was told that just drinking plain water isn’t enough, as our bodies won’t retain it. The addition of electrolytes (specifically for sodium), helps to retain the water and hydrate your body (if you remember chemistry class, you might recall the connection between sodium and water)—having always had low blood pressure, I’ve always ignored advice about limited salt intake, and all the forums and articles I’ve found echoed “there’s no upper limit on salt intake for people with POTS.” It means that, even though I try to drink a lot of water, it’s still not enough and isn’t retained in my body well enough.

There’s a few other “action items” for me, in regard to managing POTS and Ehlers-Danlos, but I feel like this simple habit of starting my day with 32-oz of electrolytes could be a small game changer. A shift in a new direction, anyway. The specialist said she’s seen people notice a big difference within a few days, so here’s hoping.

I’m certain my son also has hypermobile Eds and POTS—after all, he’s the reason I realized I have it. Upon the advice of the specialist, I’m having him drink a big glass of electrolytes each day, also, but he’s taking Nuun flavored tablets. Just to prove a point: I got a glass ready for him and called him out to the kitchen. As he walked in, I noticed the face he was making and asked what was wrong—he said, “nothing, I just got dizzy when I stood up.” So I laughed, said, “that’s what this is for,” and shoved the glass at him.

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