When Gravity Wins: Living with a CSF Leak (and Getting Anyone to Listen)

By Antonia @ UnremarkableMe – Published June 2025

Living with a chronic illness is like trying to solve a puzzle where the pieces keep changing shape. You get used to the daily discomforts, the strange symptoms, the shrugged shoulders from doctors. But some things aren’t just another part of the usual chaos.

Some things are your brain’s way of whispering: Something isn’t right.

Now imagine that whisper is your brain slowly sinking—literally—because the fluid meant to cushion it is leaking out. And no one can see it. No one believes it. Not even you, at first.

That’s what it can be like living with a cerebrospinal fluid (CSF) leak.

It’s not rare. It’s not imagined. And for people with connective tissue disorders like Ehlers-Danlos Syndrome (EDS), it’s not just possible—it’s dangerously under-recognized.

So let’s talk about it. No medical gatekeeping. No fluff. Just the truth about what happens when your brain loses its support system—and how to spot it before it drags you under.

What Is a CSF Leak?

Cerebrospinal fluid surrounds the brain and spinal cord, acting like a shock absorber and pressure regulator for the central nervous system. Think of it as the hydraulic suspension for your brain. When there’s a tear or hole in the dura—the membrane that holds that fluid in—it leaks. That’s a CSF leak.

When that cushion disappears, your brain starts to sink inside your skull. Gravity turns from an ally into an aggressor. The result? Headaches that defy logic. Cognitive fog. Nausea. Dizziness. A full-body sense that something is deeply, unnervingly wrong.

CSF leaks can happen after trauma, surgery, or completely out of the blue. People with connective tissue disorders like EDS are especially at risk because their dura is more fragile—like stitching with loose thread.

Important: Spinal CSF leaks are a known cause of spontaneous intracranial hypotension (SIH), a condition that can lead to serious complications if untreated.Source: Mayo Clinic

Symptoms: The Subtle (and Not-So-Subtle) Signs

Recognizing a CSF leak isn’t easy. Symptoms overlap with more common conditions like migraines or sinus infections, which makes them dangerously easy to dismiss. But some red flags stand out:

• Orthostatic headaches – worse when upright, relieved by lying down.

• Tinnitus, dizziness, nausea, or neck pain.

• A bubbling or crackling sensation at the base of the skull (yes, that’s real).

• Clear fluid leaking from the nose or ears (urgent—go to A&E immediately).

• Vision changes, light sensitivity, or cognitive fog.

Left untreated, CSF leaks can lead to long-term neurological damage, cognitive impairment, and serious complications like brain sagging. Too often, patients are handed paracetamol and told to “manage stress.”

What It Actually Feels Like

Reading a symptom list is one thing. Living it is another.

Imagine waking up and something just feels… wrong. Not hangover-wrong. Not “slept weird” wrong. More like your brain is trying to exit your skull through your spine wrong.

The headache builds when you sit up. It intensifies when you stand. Lying down is the only thing that brings relief. It feels like your skull is being pulled down by invisible weights—like gravity’s got a vendetta.

Some people describe a squeezing pressure at the base of the skull. Others feel like their brain is sagging inside their head, like it’s been cut loose. Some hear crackling or bubbling sounds—like Rice Krispies waging war in their spine. (I’ve had that. It’s every bit as bizarre as it sounds.)

You might feel:

• Disconnected – like you’re half-floating, or thinking through thick fog.

• Unstable – as if the floor is gently shifting beneath you.

• Drained – no matter how much you rest, your brain feels tapped out.

• Nauseous – especially after standing or moving too quickly.

• Defeated – like your body is punishing you for simply being vertical.

And sometimes it’s subtle. So subtle you start to doubt yourself. Other times it’s so brutal you find yourself Googling, “Can my brain actually fall out?”

Diagnosis: Why Is It So Damn Hard?

Getting a CSF leak diagnosis shouldn’t feel like playing medical whack-a-mole—but it often does. One symptom pops up, another gets treated, but no one spots the bigger picture.

Key diagnostic tools include:

• MRI of brain/spine with contrast – looking for signs of low pressure or brain sagging.

• CT Myelogram – contrast dye is injected into the spinal canal to find the leak.

• Cisternogram – advanced imaging for hard-to-find leaks.

• Beta-2 transferrin test – confirms CSF if fluid is leaking from nose or ears.

More info: Johns Hopkins – CSF Leak Diagnosis

CSF Leaks, Chiari Malformation, and the 5mm Controversy

If you live with Chiari malformation—or suspect you might—you may already know about the downward pull that can come with CSF flow issues. But here’s the twist: some people diagnosed with Chiari may actually be dealing with a CSF leak… or both.

Both conditions involve a drop in intracranial pressure and symptoms that overlap:

• Orthostatic headaches

• Brain fog

• Neck pain

• Balance issues

• Visual disturbances

But here’s where it gets messy.

The diagnosis of Chiari malformation (specifically Chiari I) often hinges on a measurement of 5mm or more of cerebellar tonsillar herniation below the foramen magnum—a line that radiologists and neurosurgeons have used for decades to define who does or doesn’t “officially” qualify.

And that’s the problem.

Many patients with significant, life-altering symptoms fall just short of that arbitrary cutoff—4.5mm, 3mm, even 1mm. These cases are sometimes dismissed outright as “insignificant tonsillar ectopia,” despite matching symptoms, family history, or known connective tissue disorders like EDS.

On the flip side, CSF leaks can cause “acquired Chiari”—where the brain sags due to low pressure, mimicking the tonsillar descent of congenital Chiari. In these cases, what looks like Chiari might actually be the result of a leak pulling the brain downward.

Some neurosurgeons argue that the 5mm rule is outdated and overly simplistic. Imaging alone doesn’t always tell the full story—how the brain behaves under pressure loss, instability, or tissue fragility matters just as much as any single measurement.

This is why getting an accurate diagnosis matters. Treating a CSF leak as Chiari—or vice versa—can lead to the wrong interventions, missed opportunities for repair, and months (or years) of unnecessary suffering.

If you’ve been told your tonsillar herniation “isn’t enough” to explain your symptoms, or if things worsened after a lumbar puncture or injury, consider raising the question of a potential CSF leak with your care team. Ask about upright MRI or targeted myelogram studies. You’re not being difficult—you’re doing your due diligence.

Treatment Options: From Bed Rest to Brain Glue

Treatment depends on where the leak is and how severe it is. But yes—CSF leaks are treatable.

• Conservative care – bed rest, hydration, caffeine, time.

• Epidural blood patch – your blood is injected near the leak to seal it.

• Fibrin glue patch – a medical adhesive used when blood patches don’t hold.

• Surgery – for large, complex, or stubborn leaks.

In the UK, UCLH’s CSF Leak Service is one of the few specialist programs. In the US, Cedars-Sinai and Johns Hopkins offer expert care and imaging.

Living with EDS and a CSF Leak: The Tightrope Walk

As someone with hypermobile EDS, I’ve learned the hard way that my body doesn’t always play by the rules. My connective tissue is too stretchy, too fragile, too prone to tearing without warning.

My CSF leak started subtly—just a weird bubbling in my skull. But within weeks, I was in a fog of confusion, headaches, and exhaustion that no nap could fix.

It’s scary knowing something’s wrong and being told it’s all in your head. But that’s why awareness matters. That’s why I’m writing this.

What You Can Do (If This Sounds Familiar)

If you suspect a CSF leak, don’t ignore that voice in your gut. Here’s where to start:

• Track your symptoms – note when they start, worsen, or improve.

• Speak up – if your GP dismisses you, ask for a neurology referral. Push for it.

• Share your history – if you have EDS, Chiari malformation, or past spinal issues, make sure it’s documented.

• Find community – you’re not alone. Online groups can offer insights, support, and lived experience.

  
  

This Is Serious—but You’re Not Alone

A CSF leak doesn’t always scream. Sometimes it just hums—quietly, persistently—until you forget what normal ever felt like.

You may doubt yourself. You may be doubted by others. But that doesn’t make the pain any less real. What you’re experiencing is valid, and it’s important. Your story matters, even if it’s hard to put into words.

If this sounds like something you—or someone you love—might be going through, know this:

• You’re not imagining it.

• You’re not difficult for speaking up.

• You’re not alone in this.

Healing starts with being heard. It starts with being taken seriously.

So keep pushing. Keep asking questions. Keep insisting on better.

Because even when it feels like gravity is winning—you’re still here. Still standing. Still fighting for answers.

And that? That’s not just survival.That’s resilience in motion.

Resources & Support

• Mayo Clinic – CSF Leak

• Johns Hopkins – Spontaneous Intracranial Hypotension

• NHS – CSF Leak Overview

• UCLH CSF Leak Service (UK)

• Cedars-Sinai CSF Leak Program (US)