…….to introduce a new segment I’m calling the “Rare Disease Spotlight.” Now technically, most of what we’ll cover might not be rare by the strictest definition, just a bit more on the uncommon side. But “Relatively Less Common Spotlight” doesn’t have quite the same ring to it, does it? So, let’s roll with “rare,” and I promise it’ll make sense.
Why this new segment? Well, there are many people living with unexplained symptoms, searching for answers. And maybe, just maybe, some of them have found their way to this blog. If I can help even one person find a potential answer—or at least point them in the right direction—I’ll consider this a win.
For our first “rare” disease spotlight, we’re diving into POTS. If you catch yourself thinking, “Wait, that sounds like me,” while reading this, know that you’re not alone. Let’s dive in and uncover what’s going on!
POTS: short for (postural orthostatic tachycardia syndrome), is a condition that affects the autonomic nervous system—the body’s built-in regulator for heart rate, blood pressure, and other vital functions. In POTS, this regulator malfunctions, making simple actions like standing, feel like a full-body alarm system going off. It’s not just feeling lightheaded; it’s your body struggling to adjust to something as basic as gravity.
Living with POTS often feels like a tug-of-war with your own body. Classic symptoms include:
Other symptoms people with POTS may also experience:
Everyday tasks like unloading the dishwasher can leave someone with POTS feeling wiped out for hours.
The autonomic nervous system oversees processes you don’t have to think about, like keeping your blood flowing where it needs to go.
In POTS, this system doesn’t adapt properly, causing blood to pool in the legs when standing and forcing the heart to pump overtime.
Despite being relatively common—it’s estimated that around 1 million people in the U.S. have POTS—it’s frequently missed. The condition is especially prevalent in young women, but it can affect anyone.
Here’s a startling fact: a person with POTS can experience a heart rate spike of 30 beats per minute—or more—just from standing. It’s not “just feeling dizzy”; it’s your body hitting the panic button over something as simple as gravity. Many patients are misdiagnosed for years, often told it’s anxiety, dehydration, or even “in their head.” Even experienced physicians are sometimes surprised to learn how severe and life-altering POTS can be for those who suffer from it.
Diagnosing POTS often requires connecting the dots between seemingly unrelated symptoms. Testing involves measuring heart rate and blood pressure changes from lying down to standing, or using a TTT test (tilt table test) to replicate these shifts.
If you suspect POTS, ask your doctor about orthostatic vital signs—it’s a key step in the diagnostic process. Remember, persistence is crucial; advocating for yourself can help get the answers you deserve.
Managing POTS can feel counterintuitive compared to general medical advice. For example, in most cases, we warn patients against consuming too much salt. With POTS, though, bring on the salt! Sodium helps pull fluid back into blood vessels, stabilizing blood pressure and improving circulation.
Pair that with hydration—think electrolyte drinks, not just plain water—and you’ve got a winning combination. Compression garments, particularly stockings, can help keep blood from pooling in your legs, and gentle exercises like recumbent biking can improve blood flow over time.
Pacing your activities is also essential to avoid crashes. With the right mix of strategies and sometimes medications, many people find relief and regain a sense of control over their symptoms.
“Living with POTS can feel isolating, but you’re not alone—and with the right steps, it can get better. While it takes patience to find the right balance of lifestyle changes and medical support, progress is absolutely possible. Don’t be afraid to advocate for yourself; understanding your body and working with a knowledgeable care team are key. Remember, small victories—like standing a little longer or feeling a little clearer—are worth celebrating. You’ve got this!”
Disclaimer:
The information provided in this blog is for educational and informational purposes only. It is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of content found on this blog.
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