When I first caught COVID, it felt like a bad flu. I was exhausted for a week, had trouble breathing, but eventually got better or so I thought.
Months later, I was still crashing. But this wasn’t just fatigue. My heart raced when I stood up. Showers left me dizzy and gasping. Sometimes, I’d feel my pulse pounding in my ears while lying perfectly still.
Doctors said it was “anxiety.” But my body told a different story.
When the Autonomic Nervous System Goes Off Script
After months of searching, a specialist finally ran a tilt table test and there it was: Postural Orthostatic Tachycardia Syndrome (POTS), a form of autonomic dysfunction that can follow viral infections.
Studies show that up to 30–40% of Long COVID patients develop autonomic symptoms including heart rate spikes, dizziness, GI issues, temperature dysregulation, and even fainting (Raj et al., Nature Reviews Cardiology, 2024).
For me, it meant my body had forgotten how to regulate basic things — like standing up or digesting a meal.
Even mild exertion could trigger a storm: my heart raced, hands flushed red, I’d feel a rush of adrenaline followed by crushing exhaustion.
😮💨 Breathing, Palpitations, and the Invisible Alarm
Some days, it felt like my lungs worked fine but my brain wasn’t getting the message that I was safe.
I’d feel breathless sitting still, chest tight, as if I’d sprinted a mile.
Researchers now know that autonomic imbalance and microvascular changes can cause this not necessarily low oxygen, but faulty signaling between the brainstem, heart, and lungs (NIH RECOVER, 2024).
At night, palpitations woke me up. I wore a smartwatch to track what was happening — and it confirmed what I felt: my heart rate could jump from 70 to 130 just standing up.
That small piece of data made me feel sane again. This wasn’t imagined.
Then Came MCAS — The Body’s Fire Alarm
After COVID, strange allergic-like reactions started showing up.
Flushing after meals. Itchy skin after showering. Sudden lightheadedness from perfumes or temperature changes.
I’d never had allergies before, but now my immune system seemed to overreact to everything.
My doctor explained that mast cell activation syndrome (MCAS) can overlap with Long COVID where immune cells release histamine too easily, leading to inflammation, brain fog, hives, and tachycardia.
Emerging studies estimate 10–20% of Long COVID patients meet MCAS criteria (Afrin et al., Frontiers in Immunology, 2023).
What helped?
- Low-histamine diet
- Antihistamines (H1/H2 blockers) under supervision
- Avoiding triggers (heat, stress, alcohol, certain foods)
It didn’t “cure” me, but it lowered the background fire.
Learning to Live with a Nervous System That Misfires
Once I understood that my symptoms came from dysautonomia, not weakness, everything changed.
I built a new rhythm:
- Compression garments to support circulation
- Increased fluids and electrolytes for blood volume
- Recumbent exercise (like gentle cycling or floor yoga) when I could
- Pacing and heart rate monitoring to stay below my “crash” threshold
None of it was linear. Some weeks I’d feel progress; others, I’d regress without reason. But each adjustment helped me feel a little more in control.
Family and the Shifting Normal
What Long COVID doesn’t just steal is your stamina, it steals your predictability.
My family had to learn that “maybe later” meant “if my heart rate lets me.” My kids became experts in bringing me water with electrolytes. My partner learned to recognize my color changes before I fainted.
There’s grief in that, not just mine, but theirs.
Research shows that caregiver stress and role shifts in chronic illness often mirror trauma responses (Frontiers in Psychology, 2022). We started therapy, not because our marriage was failing, but because chronic illness rewrites every relationship script.
The Science Behind the Symptoms
Here’s what the data say and what patients live every day:
- ~65% of Long COVID patients report fatigue or PEM (post-exertional malaise)
- 30–40% show measurable autonomic dysfunction
- 10–20% show MCAS-like symptoms
- Up to 30% show liver or metabolic changes
(Source: NIH RECOVER, Nature Medicine, JAMA Network Open, 2023–2024)
This isn’t rare. It’s just under-recognized.
🧡 What Recovery Looks Like Now
Recovery for me doesn’t mean “back to before.” It means:
- Being able to cook without collapsing
- Taking short walks without palpitations
- Accepting rest without guilt
- Finding purpose in writing, connecting, and educating others
Healing is slow, nonlinear, and humbling.
But it’s happening not because my body went back to normal, but because I stopped fighting it.
To Anyone Living This
You’re not alone. You’re not lazy.
You’re navigating an invisible war between your nervous system and your willpower.
Some days you’ll win by standing up without dizziness.
Other days, you’ll win by letting yourself rest.
Both count.
A Reader’s Voice
This account comes from an anonymous reader living with POTS and Long COVID. She shared her story to help others feel less alone, to show that behind the medical terms and acronyms are real people learning, adapting, and finding courage in the everyday. Her experience reminds us that awareness isn’t just about science, it’s about empathy, understanding, and listening to the quiet realities of chronic illness.
Disclaimer
This article is for information and awareness only. It is not medical advice and should not replace professional assessment or treatment.
Long Covid Journey 