Chiari, Migraines, and EDS: A Perfect Storm of Neurological Chaos

Migraines are bad enough on their own, but when you throw Chiari malformation and Ehlers-Danlos Syndrome (EDS) into the mix, you’ve got a neurological cocktail from hell. It’s like someone decided that having one debilitating condition wasn’t enough—so why not go for the trifecta of misery?

Imagine a bad episode of Black Mirror, except instead of technology going rogue, it’s your own brain, nerves, and connective tissue staging a coup. Or picture being trapped inside a malfunctioning kaleidoscope, your head filled with flashing lights, vertigo, and an overwhelming circus of sensory chaos. Sounds delightful, right?

For those of us lucky enough to experience this unholy trinity, we might have already named these symptoms something poetic, like kaleidoscope vision—which is whimsical until you realize you can’t actually see straight. In my case, I discovered that slapping on a neck brace can be a game-changer—twenty minutes with it on, and suddenly, the flashing nightmare eases off like a retreating storm. But why does this happen? How do these conditions gang up on us so effectively? And most importantly, what can we do to fight back?

Let’s dive in.

Migraine 101: The Headache That’s Not Just a Headache

Most people hear “migraine” and assume it’s just a really bad headache. Those people are wrong. A migraine is not just head pain—it’s an all-encompassing, neurological hellscape featuring a delightful array of symptoms, including:

• Aura: Zigzagging lights, blurred vision, blind spots, or—if you’re lucky—the sensation that someone shoved a kaleidoscope directly into your eyeballs.

• Vertigo: That fun “spinning world” feeling that leaves you clutching the nearest wall like a drunken Victorian heroine about to faint.

• Speech Problems: You know exactly what you want to say, but your brain decides to play a game of charades instead.

• Tingling and Numbness: Ever feel like ants are crawling across your face, arms, or legs? Yeah, that can be a migraine too.

These symptoms can last minutes to hours, often leaving behind a fatigue so crushing that it feels like you ran a marathon—except without the sense of accomplishment or the medal.

Source: NHS – Migraines

Chiari Malformation: When Your Brain Won’t Stay in Its Lane

Now, let’s throw Chiari malformation into the mix—because why not make things even more complicated?

Chiari occurs when the lower part of your brain (the cerebellum) tries to escape through the bottom of your skull, dipping into the spinal canal like a nosy neighbor peeking over the fence. This unwanted brain migration disrupts the flow of cerebrospinal fluid (CSF), leading to all kinds of mischief, including:

• Pressure headaches that get worse with sneezing, coughing, or straining (because even your body betrays you).

• Neck pain and stiffness (a.k.a. why I keep a neck brace handy).

• Migraine-like symptoms, often with intense dizziness and vision disturbances.

• Balance issues, making you feel like you’ve accidentally stepped onto a wobble board at the gym.

But here’s the real kicker: Chiari’s impact on CSF flow can amplify migraines, making aura symptoms more intense and long-lasting. So if you ever find yourself wondering, “Why do my migraines feel like they’re being powered by a jet engine?”—Chiari might be the culprit.

Source: Chiari & Syringomyelia UK

EDS: The Connective Tissue Saboteur

Then we have Ehlers-Danlos Syndrome (EDS), the condition that loves to turn every part of your body into a game of Jenga. Since EDS weakens connective tissue, it can wreak havoc on your joints, skin, and blood vessels—and, oh yes, it also loves to mess with your brain and spine.

How does EDS tie into migraines and Chiari? Let me count the ways:

• Neck Instability: When your cervical spine has the structural integrity of overcooked spaghetti, you get chronic headaches and migraines from constantly trying to hold your own head up.

• CSF Leaks: EDS makes you prone to spontaneous dural leaks, causing excruciating headaches that make you feel like someone has vacuum-sealed your skull.

• Autonomic Dysfunction: Conditions like POTS (Postural Orthostatic Tachycardia Syndrome) cause blood pressure drops and heart rate spikes, leading to migraines that come with a bonus round of dizziness and fainting spells.

Source: The Ehlers-Danlos Society

The Perfect Storm: How These Conditions Work Together to Wreak Havoc

Now that we’ve met our three main villains, let’s talk about how they team up to make life even more unbearable:

• Postural Strain: EDS weakens spinal stability, which irritates nerves, disrupts blood flow, and triggers both Chiari-related headaches and migraines.

• Sensory Overload: All three conditions heighten sensitivity to light, sound, and smell, meaning even a mild perfume or bright screen can set off a migraine explosion.

• Circulatory Dysfunction: Chiari disrupts CSF flow, while EDS and POTS mess with blood circulation, making migraines harder to predict and control.

  
  

A Personal Experience

Before I knew what was happening, my migraines became so severe that I was hospitalized three times for what looked exactly like a stroke.

• The left side of my body went completely numb.

• I couldn’t speak.

• I was trapped inside my own mind, fully aware but unable to communicate.

It was terrifying—both for me and for the people around me. And yet, after multiple hospital visits, the diagnosis was clear: it wasn’t a stroke. It was just a really, really bad migraine.

These experiences made me realize just how critical it is for healthcare professionals to understand complex migraines, especially when they overlap with Chiari and EDS.

A Final Word of Hope

Dealing with this neurological circus can feel like running an obstacle course blindfolded. You fight for answers, battle medical gaslighting, and try to function while your body pulls stunts you never signed up for.

But you are not just surviving—you are adapting, learning, and reclaiming your life.

Yes, there will be setbacks. There will be days where your body wins. But there will also be victories:

• The day the migraine fades faster than expected.

• The moment you figure out what actually helps.

• The small wins that remind you that, despite it all, you are still here.

So hydrate, take that deep breath, adjust your neck brace, and remember: you are not alone in this fight.

And no matter how chaotic this neurological circus gets, you are still the ringmaster.

Be Kind to yourself my chronically ill friends .