Wind, Light, and a Body on Fire: What Today Was Like with Trigeminal Neuralgia
Today started off scattered, and honestly… I never quite caught up.
I woke up in that weird, restless space—already overstimulated before the day even began. My thoughts were racing. I was pacing. I had too much coffee and not enough peace. And then came the wind.
If you have trigeminal neuralgia, you already know: wind is not just wind. It’s a weapon. A gust to the face can feel like glass or static or being slapped by invisible electricity. Add in bright sunlight? That’s a sensory overload cocktail with a side of despair.
I needed to take my dog out, but every part of my body screamed no. The sun, the movement, the noise. My pain was spiking. I was dizzy. My chest was tight. But Nicky needed to go—and she always tells me when. So I bundled up and did it, because that’s what we do. We keep showing up.
She pooped, thank god. And then passed out in her bed like a tiny gremlin angel, which let me come back inside and fall apart in silence.
I spent most of the day trying to calm down. I took THC capsules that didn’t seem to work… until they very much did. I spiraled. I forgot my meds. I couldn’t think straight. I was too hot, too tired, too overstimulated, too everything.
And on top of the nerve pain, the fibromyalgia lit me up like I’d been sunburned from the inside out. It’s not a pain you can point to—it’s everywhere. My skin felt raw, like even the air was too loud. I couldn’t sit, couldn’t think, couldn’t touch anything without feeling like I was on fire. When both conditions flare at once, it’s like my entire body becomes a siren. There’s no escape. Just survival.
But I made it. I survived the wind, the light, the poop patrol, and the scattered fog of my own mind. I even remembered to be gentle with myself—eventually.
This is life with trigeminal neuralgia. Not just the pain—but the fatigue, the spirals, the way even good weather can feel like a threat. The way “normal” days require tactical planning and emotional armor.
If you’re living it too, I see you.
If you’re loving someone who lives with it, please be kind.
We’re doing our best. And today?
That was enough.
With Love,
Dana & Nicky
