When I was first diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), I thought it was just about a fast heart rate when standing. That’s what the textbook said, after all. But the longer I’ve lived with it, the more I’ve realized how deeply it affects every part of your life — from digestion to brain fog to simply existing in your body.
This post isn’t just about the “classic” symptoms. It’s about the ones we rarely talk about. The ones that make you feel like you’re losing your mind — or that make others dismiss you because “you don’t look sick.” If you know, you know. And if you’re new here, I hope this helps you feel a little less alone.
💥 POTS Symptoms You Might Not Expect
Here are some lesser-known (but totally real) symptoms I and many others experience:
🧠 1. Brain Fog That Feels Like Dementia
It’s not just forgetfulness — it’s full-on cognitive dysfunction. I’ve walked into rooms and forgotten why, lost my train of thought mid-sentence, and had to reread texts four times just to comprehend them.
🌀 2. Dizziness Even While Sitting or Lying Down
Yes, the condition is “postural,” but that doesn’t mean you’re safe when lying flat. Blood pooling and poor circulation can leave you spinning even when you’re off your feet.
🤢 3. Nausea, Bloating, and Digestive Chaos
POTS affects your autonomic nervous system, which means it can slow digestion, cause gastroparesis, and make meals a gamble.
🔥 4. Heat Intolerance
It doesn’t have to be hot. Just standing in the shower too long or walking through a store can leave me overheated, flushed, and feeling faint.
🫁 5. Shortness of Breath + Chest Tightness
It can feel like you’re not getting enough oxygen. Air hunger is a real thing, especially when upright. Combine that with a racing heart and it’s easy to mistake it for anxiety or panic.
🖐 6. Tremors, Shaking, and Cold Hands
Poor circulation = freezing fingers. But add in tremors (especially during a flare) and it’s hard to even hold a cup of water, or pick up something.
😴 7. Crushing Fatigue
This isn’t tired. this is “I need to lie down right now” exhaustion after doing the dishes. Even talking for too long can drain me.
🛠️ What Helps Me Cope
Let me be clear — these tips aren’t one-size-fits-all. But here’s what I personally lean on:
Electrolyte Mixes Daily (I rotate between a few).
Compression Socks and binders — These help with blood pooling and make standing slightly more tolerable.
Salt Everything (Smartly) — Celtic salt in my water, salted food, and salty snacks throughout the day.
Small, Frequent Meals — Large meals worsen my blood flow issues.
Cooling Towels + Portable Fans — Especially when I’m in a flare or the heat makes symptoms worse.
Raising the Head of My Bed, or propping a few extra pillows — This helps reduce blood volume shifts at night.
Tracking Flare Patterns -So I can predict triggers and work with my body, not against it.
Using Mobility Aids When Needed- I’ve used a cane, a rollator walker, and needed handicap parking at different points depending on how bad the flare is. And yes, I’ve heard the comments:
“You’re too young for that.”
“You don’t look disabled.”
Here’s the truth: mobility aids are tools, not symbols of weakness. They let me live more of my life, not less. I’d rather enjoy the outing, even with a walker, than stay home just to “look normal.”
If using a cane lets me be present for my kids or make it through the grocery store, you better believe I’m going to use it, judgment or not!
💭 Real Talk: You’re Not Making This Up
If you’ve ever been dismissed or told “It’s just anxiety,” I see you. One of the hardest parts of POTS is how invisible it is. You look fine, until you’re on the floor. You show up, but no one sees the effort it took just to get there.
You are not lazy. You are not weak. You are living in a body that’s working 10x harder to do basic things.
Give yourself grace. And know you’re not alone.
✨ Final Thoughts
POTS is messy, unpredictable, and often misunderstood, but the more we talk about it, the more power we take back. If you related to any of these symptoms, drop a comment or share your story. Let’s make the invisible… visible!
Stand up to POTS… okay, maybe not that ambitious. Sitting is totally fine.
But we’ll fight this battle together, one spoon at a time!
I’m here with you,
Shandy 💜
from TacoboutWellness 🌮