What hemiplegic migraines mean to me

This post started as a voice memo I recorded late one night, more for myself than for anyone else. I've cleaned it up and added the parts I actually looked up afterward — because for years I only had the lived version, and none of the science. If you're new here, this isn't my usual home-lab-and-AI material. It's just me, talking about something I've carried since 2012.

I'm not a doctor, and none of this is medical advice. It's my personal experience plus a few things I checked against the literature afterward. If you think you have hemiplegic migraine, that's a conversation for a neurologist — the attacks can look exactly like a stroke, and they need to be taken seriously.

What it actually is

Hemiplegic migraine is a rare type of migraine where the aura includes temporary weakness — hemiplegia — down one side of the body.¹ For me it's always the left side. The word "migraine" makes people picture a bad headache, but that undersells it. During an attack the left side of my body just… stops cooperating. I've been told it feels similar to a stroke, and honestly, the first few times, that's exactly what everyone around me thought was happening.

That comparison isn't an exaggeration for effect. The motor weakness, the sensory changes, the trouble with speech — they overlap with stroke symptoms closely enough that hemiplegic migraine is genuinely hard to tell apart from one in the moment, which is why it gets worked up so carefully in the ER.¹ The difference, for me, is that mine came back. Every time. A stroke leaves damage behind; my attacks kept arriving, doing their thing, and then letting go.

The mechanism, as I later learned, is a channel problem. Hemiplegic migraine is tied to mutations in genes like CACNA1A, ATP1A2, and SCN1A — genes that control ion channels in your nerve cells. When they misfire, the calcium channels in the brain don't behave, and you get an attack.² Whether or not that's the exact story in my case, it reframed how I think about the whole thing: not "a really bad headache," but an electrical fault that happens to hurt.

The head injury at sixteen

I have to back up to when I was sixteen, because I think about it a lot. I was working on a Suburban and had it up on a jack. The jack slipped, and it caught me in the head. I spent a few days in the hospital.

Afterward, I had migraines — and at one point I was dragging my leg, which sent me right back to the hospital. That was the only time that particular thing happened back then. But I've never been able to fully untangle that injury from everything that came later. Head trauma and migraine aren't strangers to each other, and looking back, sixteen was the first time my body did the leg-dragging thing that would eventually become familiar.

The migraines came back

For a stretch of years, things were quiet. Then, through whatever chain of events — I genuinely don't know why — the migraines came back. If I'm being honest with myself, one candidate is a roughly three-year period of prescription medication use. I can't prove that's what did it. I just know the timeline lines up, and I've stopped pretending I have a clean answer.

Then, in 2012, it stopped being ordinary migraine. That's when the hemiplegic attacks started — the left-side shutdown, the stroke-mimicking version. I already got regular migraines; now I had these on top of them.

Verapamil, and a thing I didn't know to look for

My neurologist tried a lot of things. The first was verapamil — a calcium-channel blocker, the kind of drug usually handed out for blood pressure.³ It isn't a random choice: because hemiplegic migraine is fundamentally a calcium-channel problem, there are case reports of verapamil actually helping people like me, both the sporadic and the familial forms.⁴ So the logic was sound, even if the results were mixed.

Here's the part that still gets me. At the time, I had never heard of Red 40. Nobody sat me down and said "watch the food dye." And why would they — it was in everything, including, as it turned out, the medicine I was taking to feel better.

They spent a few years trying different combinations, trying to figure out why nothing was fully working. I don't blame anyone for that. They were looking at the migraine. I was looking at the migraine. Neither of us was looking at the coating on the pill.

Fourteen years later: Red 40

Fast forward to now — 2026. Fourteen years after the diagnosis. And I finally worked out the pattern I'd been missing the whole time: every time I have Red 40, I get a headache, or a full migraine. Not literally every single time. But far more often than not. And it seems to scale a little with the amount — a small hit is different from a big one.

Once I saw it, I couldn't unsee it. Red 40 — Allura Red — is in an absurd number of products, and there's a real, if under-studied, thread in the literature linking artificial food dyes to headaches and migraine in sensitive people.⁵ The honest caveat is that the strong evidence is thin and a lot of it is anecdotal; the standard advice is that food dyes trigger some people and not others, and the way you find out is a careful elimination-and-rechallenge.⁶ That's basically what I did to myself by accident, over years, one product at a time.

The moment it really clicked was finding it in a vitamin. Read that back: a company selling you a health supplement had put food coloring in it. Why on earth would a vitamin manufacturer dye a pill you swallow? There's no nutritional reason. It's there to make the tablet look a certain way, and for me, it was quietly setting off the thing I'd spent over a decade chasing.

So I did the drastic thing — I stopped taking all of my medicines to isolate the trigger. And when I went back through them, there it was again: Red 40, right in the verapamil. The drug I'd been given for the migraines was carrying the dye that, for me, helps cause them. It wasn't the only one, either — there've been several other "red" medications over the years that I now look at differently.

Where I've landed

Red 40 does bad things to me. It took me years — fourteen of them — to say that sentence with any confidence, but that's the truth of it: it's my number one biggest trigger. Not the only one, but the one that, once I cut it, changed the shape of my life.

I want to be careful here. I'm one person. My biology isn't a study, and "I felt better when I quit X" is the weakest form of evidence there is — I know that. Red 40 is officially considered safe for most people, and most people can eat it without a second thought.⁶ But "most people" was never me, and the only experiment that mattered was the one I ran on myself.

Where I've landed: the regular migraines are still around — they never fully leave. But the hemiplegic attacks, the stroke-mimicking left-side ones? I haven't had one in a good while now. After fourteen years, I'll take that. If you're somewhere earlier in your own version of this, and everyone keeps telling you they can't find the cause: read the label. Read all of them. Sometimes the trigger has been sitting in your own medicine cabinet the whole time.

Now it's time to go to bed.

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References

1. The Migraine Trust. Hemiplegic migraine. Retrieved 2026.
2. CACNA1A Foundation. About CACNA1A hemiplegic migraines. Retrieved 2026.
3. Migraine.com. Calcium channel blockers for migraine prevention. Retrieved 2026.
4. Yu W, Horowitz SH. Treatment of sporadic hemiplegic migraine with calcium-channel blocker verapamil. Neurology. 2003;60(1):120–121.
5. Migraine Buddy. Food coloring and its potential link to migraine episodes. Retrieved 2026.
6. Cleveland Clinic. Red Dye 40: is it safe? Side effects and food list. Retrieved 2026.