Living with POTS: What It Is, How It Feels, and How I Cope
I’ve been living with POTS—Postural Orthostatic Tachycardia Syndrome—for a few years now. For me, it was set off by breast cancer treatments including chemotherapy and 15 total surgeries.
I’d been telling my doctors I didn’t feel right for months and years after my treatment had supposedly “ended”. I had over thirty various symptoms, including chronic infections and nausea, gastrointestinal issues so severe they landed me at the Mayo Clinic, extreme fatigue, brain fog, and dizziness.
I kept saying, “This feels like more than just breast cancer recovery.” But doctor after doctor told me, “It’s probably just chemo,” or, “It’s menopause,” or, “It’s from the trauma of all the surgeries.” And while some of that might have been true, none of it explained the daily reality I was living in.
When I finally saw the specialist who diagnosed me with Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS), she also had me do a simple 10-minute standing test. My heart rate jumped dramatically from lying to standing.
“You also have POTS,” she said.
Try the 10 Minute Stand Test…
I was surprised. But I also felt relief. It explained so much—Why I felt so “off.”Why my body wasn’t bouncing back.Why I was always dizzy, nauseous, shaky, and drained.Why I just didn’t feel like me anymore.
Immediately after my biggest reconstruction surgery (9 hours long)–DIEP Flap. Done during COVID, so no visitors.
She also told me something I think more people need to hear: “You likely had a predisposition to POTS, but it wasn’t triggered and set off until you experienced all the trauma of all your breast cancer treatment and surgeries. That’s often how it shows up—after something big.”
I was 44 when I was diagnosed with breast cancer and 47 when I was finally diagnosed with POTS. Most people are diagnosed with POTS in their teens or twenties. But that doesn’t mean older adults don’t have it—it just means we’re more likely to be misdiagnosed, ignored, or told it’s “just stress.”
Looking back, it makes sense. I probably always had EDS, but it didn’t fully affect me until cancer treatment pushed my body past its limit. The chemo, medications, breast implants, hernia mesh, internal sutures, drains—all of it— triggered my mast cells. And the repeated trauma of 15 surgeries and the aftermath? That’s what set off the POTS.
And I’ll be honest—this diagnosis has been really hard for me to accept.
I love movement. I thrive when I’m active. I love walking, Pilates, hiking, yoga… just being upright and alive. I was a “go-getter” before–always engaged in some kind of meaningful work or activity. I literally wrote my third book on exercise and mental health!
And now?
I spend much of the day sitting, reclining, or lying down with my feet up.I pace myself carefully and do activities with moderation. I take breaks constantly.I’ve had to grieve the loss of what used to come so easily.
But I’ve also learned to adapt.There are ways to cope and ways to live more fully—even with a chronic condition like POTS.That’s what this post is about.
What Is POTS?
Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia—an autonomic nervous system disorder—that affects circulation and heart rate. When you stand up, your blood pools in your lower body, and your heart has to work overtime to keep blood flowing to your brain. That can cause symptoms like:
- Lightheadedness or dizziness (especially when standing)
- Rapid heartbeat
- Fatigue
- Nausea
- Brain fog
- Shakiness or tremors
- Exercise intolerance
- Heat intolerance
- Shortness of breath
- Feeling like you might faint (or actually fainting)
For me, it’s a combination of dizziness, nausea, weakness, brain fog, and fatigue that makes it hard to do the simplest things—like having a conversation while standing or even sitting up through church services.
How Do You Know If You Have POTS?
If you feel worse when standing and better when lying down…If you get dizzy, faint, or your heart pounds after doing simple things…If you are sensitive to heat, the sun, or exercise…. If your body crashes after activity and you feel like your nervous system is in constant overdrive—you might want to look into POTS.
I created a free POTS Diagnosis Guide to help others like me who are struggling to understand what’s going on and how to get answers. You can grab it here or comment “diagnosis” on Instagram and I’ll DM it to you.
Get the “How to Get Diagnosed with POTS & MCAS” Guide, FREE, here…
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How I Cope With POTS (and How You Can Too)
POTS doesn’t go away, but there are ways to make life more livable. Some days I still feel like I’m chasing stability, but I’ve learned to adapt. Here are some of the tools I use:
(Click here for my “POTS Survival Kit” items on Amazon)
1. Hydration + Electrolytes
I drink 90-120 oz of water a day with electrolyte packets or other high-sodium mixes to help retain fluids and increase blood volume. My fave brand is LMNT, because it’s one of the highest in sodium that I’ve found, plus I love the taste. (Shop here)
2. Salt, Salt, and More Salt
Many people with POTS need 3,000–10,000 mg of sodium a day. (Talk to your doctor about your personal needs.) Since I don’t usually get enough in my diet, I take salt tablets or use high salt electrolyte mixes as needed. (Shop here)
3. Compression
I wear compression leggings or thigh-high socks, especially on days when I’ll be upright more. The compression helps push blood back toward the heart and brain. When it comes to compression, the thighs or abdomen are important to target, too, so I use abdominal binders or compression shorts some days, too. (Shop here)
4. Cooling Strategies
Heat makes POTS worse. I use fans, cooling towels, and stay in the shade whenever I can. I also plan errands or walks for early morning or evening when it’s cooler. (Shop here)
5. Modified Exercise
Traditional workouts are often too much. I do reformer Pilates (where I can lie down), short walks, gentle yoga, or even stretching on the floor. Movement helps, but overexertion makes it worse—so it’s a balance.
6. Listening to My Body
This one took me the longest to learn. I sit down mid-conversation. I cancel plans if I feel off. I leave early, lie down, close my eyes, and pause when I need to. I used to feel guilty about this. Now I know—it’s survival.
7. Pacing & Accommodations
I’ve learned to adjust how I do almost everything—like ordering groceries instead of shopping in person. I pace my energy throughout the day and ask for help when I need it. It’s not easy, but it keeps me going.
8. Support + Validation
Having POTS can feel invisible and lonely. Surrounding myself with people who get it—or at least try to—is everything. And sharing about it helps others understand what I go through every day.
living with Pots is not easy
It’s a constant dance between pushing myself and pulling back. But I’ve learned to meet my body where it is—and to trust that even on the nauseous, swollen, or dizzy days, I am still healing, still strong, and still worthy.
If you suspect you have POTS or want support navigating it, start with my free POTS Diagnosis Guide here.
You’re not alone. I see you. I am you.
With love,Christina@drchristinahibbert
What’s it like for you? Leave a comment, or any questions, below!
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