The first Christmas following this disorder hitting, I was having daily non stop migraine. Chronic migraine that appeared to never end…. We were playing Jeopardy. I was always in charge of the planning, games etc… I was in charge- and I know I was a hot mess.
Not “I don’t feel good.”
Not “I need to lie down.”
Wrong.
We’re a competitive family. Loud. Fast. The kind of people who argue over board game rules like there’s real money on the line. Normally I’d be running the board, keeping score, correcting answers nobody asked me to correct, and managing the chaos with the confidence of a middle-aged woman who believes she is one organizational binder away from total world domination.
Instead, I was standing in the living room crying so hard I could barely read the category cards.
Not quiet tears.
Not emotional tears.
Just full tears. Streaming uncontrollably down my face while everyone awkwardly tried to continue playing around me like this was remotely normal behavior.
And the strangest part?
I wasn’t even sad.
I I sat through Christmas dinner crying into mashed potatoes while casually discussing completely normal things.
A beer I had with a friend.
Something funny somebody texted me.
Plans for the next morning.
I kept reassuring my mom, because everyone else knew at this point but my mom. This was the first she had actually experienced this.
“I’m okay.”
“Seriously, I’m fine.”
“I honestly have no idea why I’m crying.”
“Just ignore me. It’ll stop eventually.”
It did not stop eventually.
Meanwhile tears just kept leaking out of my face like my nervous system had short-circuited and nobody informed my body.
That was one of the moments I realized this was not “just headaches.”
And this is always the awkward part to explain because the second you say the word migraine, people immediately go:
“Oh yeah, I get migraines too.”
And I never want to invalidate somebody else’s pain because headaches absolutely can be brutal.
I’ve had horrible headaches.
The kind that make you shut the curtains and question every decision that led you to existing near light.
But this?
This feels different.
Honestly, sometimes my actual head hurts less than a bad tension headache or get this-not at all.
The problem is everything else.
The speech issues. Like drank a a few too many cocktails.
The vertigo.
The sensory overload.
The nausea.
The confusion.
The loss of coordination.
The random crying.
The terrifying feeling that your brain and body are no longer communicating correctly.
Because migraine — at least this version of it — doesn’t feel like pain as much as it feels like loss of control.
And I think that misunderstanding is part of why so many of us become convinced we’re dying.
Because nobody tells you migraine can look like dementia.
Or a stroke.
Or a nervous breakdown.
Or early cognitive decline.
I had neuropsych testing done. He thought it was FND after all my testing. My neurologist disagrees and tells me- it’s migraine. It is so completely misunderstood and unknown. So I guess maybe it’s FND, maybe it’s Migraine and maybe I am just losing my mind.
Nobody tells you your own brain can suddenly start feeling unfamiliar.
At one point they rushed me to another hospital because they thought I was having a stroke.
Honestly?
I understood why.
Multiple specialists kept asking me:
“What does it actually feel like?”
And it’s almost impossible to explain unless you’ve lived it.
The closest thing I’ve ever found is this:
It feels like being blackout drunk — except you’re completely aware.
Not tipsy.
Not goofy.
Blackout drunk.
Like your brain is no longer processing information correctly.
Your reactions lag.
Your body feels disconnected.
Time feels strange. I lose time.
Your surroundings feel slightly unreal.
Have you ever seen those old movies where they simulate what it is like on acid or mushrooms or have you taken a bit too much of the medicinal gummies. The arm moves through the air and it’s moving so slowly, it leaves a trail of color to simulate the vibration in the air. That is the visual that pops into this beautifully complex migraine brain of mine when I try to describe it. Everything is thick- muddled- slow. The most terrifying part is that you KNOW exactly that it’s happening and there is nothing you can do about it.
You can hear yourself sounding wrong.
You can feel your coordination slipping.
You can feel your brain buffering in real time like hotel WiFi from 2007.
The words exist somewhere.
But they won’t come out correctly.
Wrong words.
Half words.
Delayed words.
Sometimes nothing at all.
And you’re trapped inside yourself fully aware you sound off.
That’s the part that terrified me most.
Not the pain.
The awareness.
Because pain feels survivable.
Losing trust in your own brain does not.
Then there’s the dizziness.
And people hear “dizzy” and picture standing up too fast.
I mean full-body disequilibrium.
Like the floor quietly shifted three inches to the left without warning.
Like your legs and your brain are using two different GPS systems.
Like gravity became more of a loose suggestion than a law of physics.
I have stumbled into walls. I have bruises on my bruises.
Dropped plates.
Dropped drinks.
Dropped entire conversations halfway through sentences because my brain simply exited without notice.
Sometimes my hand just stops cooperating.
Like the signal between my brain and body got interrupted halfway there and my nervous system decided:
“Best of luck to everybody involved.”
And the sensory stuff?
Absolutely unhinged.
Lights feel violent.
Sound feels physical.
Certain smells feel weaponized.
The smell of popcorn at my daughter’s graduation nearly took me out at Van Andel Arena.
I am not exaggerating.
The smell hit first.
Then the chewing.
Then the lights.
Then the vertigo.
Suddenly I’m halfway up steep arena stairs gripping the railing trying not to vomit in public while everyone else is simply… enjoying a graduation ceremony.
Meanwhile my nervous system is conducting its own tiny demonic orchestra.
And maybe one of the most humiliating moments happened at Meijer.
I was trying so hard to appear like a normal human grocery shopping while my body was very much not participating in that goal.
I could feel the nausea building.
The dizziness.
That awful overstimulated “I might either vomit or collapse in aisle twelve” feeling.
So I pushed my cart into the liquor aisle because it was quieter. And truly there’s something calming about the wooden flooring, it mutes the bright lights so they aren’t as assaulting.
I turned my back toward everyone else.
Faced the bottles.
Closed my eyes.
Tilted my head away from the fluorescent lights like a dying Victorian woman avoiding sunlight.
And apparently while I was trying not to medically unravel next to the tequila, some man got incredibly close behind me without me noticing.
I mean ON me.
He accidentally touched me. I think he was trying to peer over my shoulder and I jumped, hit him, nearly screamed, and panicked so aggressively the poor man took off running immediately.
And all I could think afterward was:
This man probably thinks I’m either drunk, insane, or stealing liquor when really I’m just trying not to collapse next to a display of Jose Cuervo. He deserved to be hit- just saying. Floor walker or not- what on earth was he thinking. Honestly I had zig zagged, double backed, gone down aisles 3 or 4 times. I literally was drunk shopping without the fun of drinking. He was most likely a ghost shopper or those people Meijer hires to follow people around to make sure they’re not shoplifting. Ummm no just mentally unstable, forgetful and a little off her rocker trying really damn hard to be normal. Just for a normal task that was so easy not that long ago.
Migraine is humbling in ways I cannot adequately explain.
And maybe this is the hardest part to admit:
This disorder dismantled my identity.
I used to be the capable one.
The organized one.
The reliable one.
The one carrying the mental load of the family without even realizing I was carrying it.
Before this, my husband couldn’t make a doctor appointment without me.
Now he reminds me to take my medications.
Tracks appointments.
Helps manage schedules.
Repeats conversations when my memory glitches out halfway through them.
And that shift quietly guts you.
Because I didn’t just lose functioning.
I lost the version of myself that felt sharp.
Independent.
Reliable.
Useful.
And maybe the ugliest truth underneath all of this is realizing how much of my worth was tied to being useful to other people.
I think most people quietly fear becoming a burden.
I became one.
People always rush to correct me when I say that.
“You’re not a burden.”
“We love you.”
“You’d do the same for us.”
And I know they mean it lovingly.
But there is something psychologically brutal about watching your role inside your own family change in real time.
Especially when you used to be the person everyone depended on. Not just for the home stuff, but, did you know I’ve had enough education I could have multiple bachelors, certifications and probably a masters at this point. I feel as though I’ve lost it all. I know I haven’t. Not really but when your husband tells you he is considering going in later in the morning because your brain can no longer reliably remember medication timing by itself. You feel like you have.
Especially when people start watching you differently.
Not cruelly.
Carefully.
And maybe that sounds dramatic unless you’ve experienced it yourself.
But I think a lot more people understand this feeling than we admit.
Maybe not through migraine specifically.
But through aging.
Burnout.
Depression.
Parenthood.
Caretaking.
Divorce.
Illness.
Grief.
That terrifying realization that the person you built your identity around being… no longer exists in the same way.
And if I’m being really honest?
I became obsessed with trying to figure out what was happening to me.
The symptoms.
The testing.
The medications.
The research.
The forums.
The appointments.
Because when your nervous system turns against you, it consumes everything.
I know I talked about it too much for a while.
I know some friendships quietly faded.
And if I’m being fair, I understand why.
It’s exhausting being around someone in the middle of losing themselves.
Especially when that person cannot stop talking about the loss because they’re desperately trying to make sense of it before it swallows them whole.
And the crying…
God, the crying.
Not sadness.
Just neurological overload leaking out of your face in public while you simultaneously pray your body will stop betraying you for five damn minutes.
Am I better now?
Some days.
Other days I still walk into rooms and forget why I’m there.
Still lose words.
Still feel my nervous system shorting out under too much noise, light, stress, motion, smell, or exhaustion.
And honestly?
Part of me still wants people to understand this is not “just a headache.”
But if I strip this story all the way down to the truth, that’s not actually the deepest reason I write about it.
The deepest reason is this:
I spent years terrified I was dying.
What I never expected was grieving the version of me that disappeared while I stayed alive.
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