Welcome to the Histamine Circus: Living with MCAS, Sinus Chaos, and a Body That Panics for Fun
- Antonia Kenny
- Apr 23
- 5 min read
By Antonia at Unremarkable Me (Hilarious under pressure.)
For anyone blessed (or let’s be honest, cursed) with Ehlers-Danlos Syndrome (EDS), the body's ability to function like a well-oiled machine is about as likely as me winning an Olympic medal. Add in Mast Cell Activation Syndrome (MCAS), and suddenly your immune system has the decision-making skills of a drunk octopus—randomly reacting to things that absolutely should not be a problem.
I should know. I’ve spent decades feeling like I’ve had a sinus infection since the late '90s, paired with a nose so sensitive I could probably detect what your neighbour had for lunch. If any of this rings a bell, buckle up—we’re diving into the tangled mess that is histamine dysfunction, chronic sinus chaos, and fight-or-flight mode that just won’t quit.
Histamine: The Jekyll and Hyde of the Immune System
Histamine is a chemical your body naturally produces, involved in everything from defending against infection to helping with digestion and acting as a neurotransmitter. When it behaves, it’s essential. When it doesn’t, well... cue the clown music.
With MCAS, mast cells—the body’s immune watchmen—go rogue. Instead of reacting appropriately to genuine threats, they start flipping out over things like pollen, perfume, or a suspicious-looking bug. It’s like your body replaced its smoke alarm with a car alarm that goes off every time the wind changes.
How Histamine Causes Chaos (A Greatest Hits Collection)
Sinus Issues – Constant congestion, postnasal drip, and the unshakable feeling you’ve had a sinus infection since 1998.
Smell Sensitivity – I can detect a packet of crisps being opened from across the room. Superpower? Maybe. Mostly just nauseating.
Random Allergic Reactions – Because a flower in a vase is clearly a threat to national security.
Skin Reactions – Hives, itching, flushing—or in my case, oddly specific rashes on the palms of my hands and soles of my feet.
Gastrointestinal Drama – Bloating, nausea, acid reflux. Some days it feels like food has declared emotional war on me.
Fight-or-Flight Overdrive – Your body is ready for battle, but there’s no enemy in sight.
The Sinus Situation: Permanent Blockage, Zero Relief
People with EDS already deal with connective tissue that’s flimsier than a soggy napkin. This means our nasal structures are more prone to collapsing, swelling, and generally refusing to cooperate. Add in MCAS, and your sinuses become a battlefield of inflammation and hyper-reactivity.
Common Sinus Struggles in EDS & MCAS:
Constant Congestion – Doesn’t matter if it’s summer, winter, or you’re in a sterile vacuum bubble.
Postnasal Drip – That delightful drip-drip of mucus always lurking in your throat like an uninvited guest.
Random Swelling – Your nose will just randomly shut for maintenance.
Environmental Triggers – Perfume, smoke, scented candles… basically, the entire outside world.
Nosebleeds & Fragile Vessels – Because if my sinuses can bleed, they will.
The Fight-or-Flight Mode That Never Ends
Here’s where things get truly absurd. The nervous system in people with EDS and MCAS often gets stuck in permanent survival mode. It’s like your body downloaded anxiety and forgot how to turn it off.
Signs You’re Stuck in Fight-or-Flight Mode:
Heart Racing for No Reason – Just standing up can feel like you ran a 5K.
On Edge Constantly – Like you’re bracing for impact… except nothing ever hits.
Dizziness & Blood Pressure Swings – Standing up? That’s an extreme sport now.
2AM Adrenaline Surges – Surprise! You’re panicking in the middle of the night again.
Sensory Overload – Bright lights, loud sounds, strong smells? All too much.
This isn’t just “being sensitive.” It’s a physiological misfire, often tied to dysautonomia (like POTS) and autonomic dysfunction—conditions that love to party with MCAS and EDS whether you invited them or not.
My Oh S#%! Moment: Anaphylaxis Over a Bug Bite
I’ve had 18 allergic reactions severe enough to need medical attention. For each of those, there were probably double the amount I managed with antihistamines and pure stubbornness.
But one reaction stands out.
I was staying at a hotel, popped outside for a cigarette (yes, I know—horrible habit), and after finishing up, rushed back in because I desperately needed the loo. While sitting there, I noticed two red patches blooming on my knees. Odd, I thought. Then I caught sight of my face in the mirror. Flushed. Blotchy. My chest was tight.
The next thing I remember? Being in the front seat of my ex’s car as he screamed at me to stay awake.
I didn’t.
I woke up in Resus—chaos around me. Bright lights, beeping machines, people shouting, and the sheer terror on my ex’s face. A doctor leaned over me and said, “Welcome back. You gave us a scare. How are you feeling?”
All I could manage was a thumbs-up and:“Tip-top. You?”
The whole room burst out laughing. Apparently, that’s how they knew I was really back.
Later, I learned the culprit was a bug bite—something so small it seemed absurd. But with MCAS, absurd is just another Tuesday. I felt physically shattered and emotionally rattled for months. The fear doesn’t go away quickly. You start seeing the world differently—less as a place to explore and more as a minefield to navigate.
So What Can You Actually Do?
Living with MCAS (and its mates EDS and dysautonomia) is like trying to herd cats while blindfolded. But there are ways to regain a bit of control:
Track Triggers – Keep a journal of foods, environments, stress levels, and symptoms. Patterns do emerge.
Carry Emergency Meds – I never leave home without antihistamines..
Filter Your Environment – Air purifiers, unscented products, fragrance-free laundry detergent—they help.
Manage Stress – Easier said than done, but breathing exercises, pacing, and gentle routines help calm the autonomic system.
Find a Supportive Medical Team – You want a team who listens, doesn’t roll their eyes, and understands MCAS is real and debilitating.
Final Thoughts: You’re Not Imagining It
If any of this sounds familiar, you are not alone. This isn’t in your head. It’s in your cells, your blood vessels, your sinuses, your nervous system. And while it may not be curable, it is manageable.
And yes—some days it’ll feel like your body is on fire because you stood near a scented candle. But on others, you’ll laugh through the absurdity, manage your triggers like a pro, and maybe even make a team of emergency doctors chuckle mid-crisis.
You are not fragile. You are not fussy. You are not exaggerating.
You are navigating a full-body overreaction with grace, grit, and more antihistamines than a pharmacy shelf. That takes strength. And possibly snacks. Always snacks.
So hang in there, fellow histamine circus performers. We may not be winning medals—but we are out here surviving in style.
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