Little Hope Notes

If you’ve ever stood up and felt like you were going to pass out, had your heart race for no reason, or dealt with exhaustion so deep it feels like your body is made of lead—you might know exactly what living with Postural Orthostatic Tachycardia Syndrome (POTS) feels like.

Hi, I’m someone who lives with POTS, and I know firsthand how confusing, frustrating, and downright exhausting it can be. Whether you’re newly diagnosed, searching for answers, or just trying to figure out how to make it through the day without feeling like you’ve run a marathon, I want you to know you’re not alone.

Let’s talk about what POTS actually is, what it feels like, and—most importantly—how to live a full and joyful life even when your autonomic nervous system seems to be fighting against you.

So, What Exactly is POTS?

POTS is a form of dysautonomia, meaning it affects the autonomic nervous system—the part of our body that controls things we don’t consciously think about, like heart rate, blood pressure, digestion, and temperature regulation.

For me, POTS means that when I stand up, my heart rate jumps by at least 30 beats per minute (sometimes way more), making me feel dizzy, lightheaded, and sometimes even like I might faint. This happens because my body struggles to properly circulate blood when I’m upright. Instead of smoothly adjusting to standing, my nervous system panics and sends my heart into overdrive.

And let’s be honest—it’s exhausting.

What It’s Like to Live with POTS

POTS affects every single day of my life. Some days, I feel almost normal; other days, just taking a shower or walking across the room leaves me breathless and shaky. Here are some of the most common symptoms I (and many others with POTS) deal with:

• Dizziness & Lightheadedness – I feel like I’m going to pass out when I stand up too fast.
• Heart Palpitations – My heart races like I’m running a race, even when I’m sitting still.
• Crushing Fatigue – I don’t just get “tired”—I feel completely drained and unable to function.
• Brain Fog – Words slip away from me, and I forget what I’m saying mid-sentence.
• Nausea & Digestive Issues – Because POTS affects the autonomic nervous system, it messes with digestion, too.
• Shaky & Weak Muscles – Some days, even holding my phone feels like too much.
• Heat Intolerance – I overheat way too fast, and summer is basically my worst enemy.

Not everyone with POTS experiences the exact same symptoms, and symptoms can fluctuate day by day. The unpredictability is one of the hardest parts of living with this condition.

How I Got Diagnosed

Getting diagnosed with POTS wasn’t easy. Like so many others, I spent years being dismissed by doctors, being told my symptoms were just anxiety, dehydration, or “all in my head.”

When I finally found a doctor who listened, I had a Tilt Table Test, where I was strapped to a table that tilted upright while they monitored my heart rate and blood pressure. Sure enough, my heart rate skyrocketed, and my blood pressure struggled to keep up. That, combined with my symptoms, led to my official POTS diagnosis.

If you’re in the process of trying to get diagnosed, don’t give up. Keep advocating for yourself, track your symptoms, and come to appointments with notes so you don’t forget anything important.

How I Manage POTS (Without Losing My Mind)

There’s no cure for POTS, but over time, I’ve found ways to make life easier and manage my symptoms. Here’s what helps me the most:

1. Hydration & Salt are My Best Friends

I drink water and electrolyte drinks constantly (Liquid IV, Pedialyte, and homemade electrolyte mixes are lifesavers). Salt helps increase blood volume, so I don’t shy away from salty snacks!

2. Compression Socks & Leggings Keep Me Upright

Wearing compression socks or leggings helps prevent blood from pooling in my legs, which reduces dizziness and fatigue. They’re not exactly stylish, but they work.

3. Medications Help (But They’re Not a Magic Fix)

Some people with POTS take beta-blockers, fludrocortisone, or midodrine to help manage symptoms. Medication isn’t a perfect solution, but for many of us, it makes daily life more manageable.

4. Exercise (But Very Carefully!)

Before I knew I had POTS, exercising felt impossible. Now, I focus on gentle exercises like walking outside (when it’s not too hot) or yoga (that is slow and doesn’t require me to change positions too quickly) before trying anything more intense. Slowly building up strength has helped a lot.

5. Small, Frequent Meals Keep Me Going

Large meals make me feel worse, so I eat smaller meals throughout the day to keep my blood sugar stable and avoid post-meal crashes.

6. Rest is Non-Negotiable

I used to feel guilty for resting so much. Now, I know that listening to my body is the best thing I can do. When I need a break, I take one. Period. Sometimes this means abandoning a full cart and going back out to my car to sit down.

Navigating Daily Life with POTS

Life with POTS requires a lot of adjustments, but over time, I’ve learned how to make things easier:

• I stand up slowly to avoid dizzy spells.
• I plan rest breaks when I have a busy day.
• I keep a cooling towel & fan handy because heat makes my symptoms worse.
• I set reminders for food, water, and meds because brain fog is real.

Most importantly, I remind myself that I am not lazy. I am not weak. My body just works differently. This is where talk therapy has made a huge difference in my life.

Mental Health & POTS

The hardest part of POTS? Feeling misunderstood. So many of us hear, “But you don’t look sick!” or “Just drink more water and exercise more!” from people who don’t get it.

The reality is, POTS affects every part of my life, and it’s not just something I can “push through.” That’s why taking care of my mental health is just as important as managing my physical symptoms.

What Helps Me Cope:

• Talking to others with POTS – Finding a community that understands is a game-changer.
• Therapy – Chronic illness is tough, and having a therapist helps me process everything.
• Self-Compassion – Some days are just hard, and that’s okay.

You Are Not Alone

If you have POTS, or think you might, I see you. I know how frustrating, exhausting, and isolating it can feel. But you are not alone, and you are not broken.

With time, trial and error, and a whole lot of self-advocacy, you can find ways to live well with POTS. Some days will be harder than others, but that doesn’t mean there isn’t joy, hope, and beauty in the life you’re living.