Summary: From headache onset to blood patch in 4 weeks.
My Roller‑Coaster Ride Through a Spontaneous CSF Leak
Christmas holidays should have been all mince pies and Michael Bublé, yet there I was in the city with my daughter nursing a headache only two Nurofen deep. I rarely get headaches, so this was bizarre—and getting worse.
Four days later, it had escalated to a full-blown surround-sound migraine. I was nauseous, my head throbbed from neck to forehead, and I was sweating like I’d run a marathon in a sauna. My ears felt like I was stuck on a permanent flight—ringing, popping, whooshing. Turning to speak to friends, I twisted my whole torso like a budget Batman. My food tasted strange. My vision blurred. My speech slurred. I felt disoriented.
A friend handed over some migraine meds, which took the edge off—but only just. I went home and collapsed in bed, lights off, ice pack on neck. That became my one true source of relief.
Over the next two weeks, I collected diagnoses like some people collect fridge magnets.
First stop: chiropractor. He poked and prodded until he found two points of pain at the back of my head. “Cervicogenic headache,” he said. Cue massage machine, neck manipulation, and the rolled towel + ice pack combo, which gave me a few fleeting moments of peace.
Still in agony, I visited my GP. I sat crying in the waiting room, afraid I’d vomit or pass out. He agreed: cervicogenic. Prescribed Endone. I nearly passed out waiting at the chemist, and as I drove home—daughter in tow—I held my hand over my mouth but as soon as I pulled into my driveway, I jumped out of the car and vomited on the lawn like I was auditioning for The Exorcist. My daughter was mortified. I was just trying to survive.
Solo mum to a seven-year-old at the time, I was barely able to stand. Dinner became a chocolate donut for her because I literally couldn’t do better. Lying flat with a rolled‑up towel under my neck became my accidental New Year’s resolution.
A few days later, desperate, I took myself to Emergency. They ran a CT and some bloods, kept me for 10 hours, gave me a cocktail of meds—including codeine (which I’d flagged as a no-go)—then sent me on my merry, pain-addled way to drive myself home.
Still in excruciating pain five days later, I hit up Dr. Google. That’s when three alarming words lit up the screen: cerebrospinal fluid leak.
The symptoms? Uncannily accurate. I booked in with a different GP, mentioned the fluid in my ears, and asked: “Could I have a spinal fluid leak?” He glanced at me, said it was likely stress, and handed over a script for muscle relaxants.
At this point, I’d just started a new contractor job. No work meant no income so instead I burned through our savings.
Five more days of agony later, I marched into the Emergency department again and said I wasn’t leaving without an MRI. They admitted me. I pleaded my case of a CSF leak with the neurology team, but they were doubtful—no lumbar puncture, no trauma, no epidural. Still, they gave me a bilateral occipital nerve block, which brought temporary relief.
The next day they discharged me with a prescription for antidepressants and an MRI booking for a few days later.
When MRI day arrived, I was barely functional with numbness in my head, face, and right arm. Post-MRI, the pain was unbearable, and I went straight back to Emergency. They admitted me again.
Finally, they scanned everything: brain and spine, with and without contrast.
The following day, I was finally delivered the big reveal: A cerebrospinal fluid leak at T7. Right in the middle of my thoracic spine. The Professor said he had waited his whole career to see a case like me, his first spontaneous leaker.
Things moved quickly after that. The next day, I was in theatre for an epidural blood patch—where they inject your own blood near the leak in hopes it’ll clot and seal the hole. I had to be awake during the procedure in case I lost feeling in my legs (reassuring!). Two cannulas: one to draw my blood, one in my spine to deliver it. The back one was agony. Post-procedure, I had to lie flat for an hour and hope gravity and platelets would do their thing.
Relief was instant—but I wasn’t sure if it was the patch or the previous nerve block. Only time (and gravity!) would tell.
The next day brought fresh horror: my head felt like it might explode. I couldn’t eat, felt nauseous, and lay in a darkened room with cold cloths over my face like some tragic Victorian heroine. I vomited violently and begged for help. A doctor turned up but admitted they weren’t experienced in CSF leaks. Eventually, I discovered that elevating myself at a 45-degree angle relieved the pressure.
I was discharged a few days later with the breezy advice to “just take it easy,” which ranks right up there with “stay hydrated” as top-tier uselessness.
Once home, I found my salvation in a Facebook group of Aussie and Kiwi “leakers.” That’s where the real recovery advice lived: hydrate, caffeinate, avoid lifting, and rest. Like, really rest. Not “folding washing while resting.”
The anaesthetist rang to check on me (bless him), and just like that, it was over. No follow-up. No fanfare. Just four weeks from collapse to cannula. In CSF leak terms, that’s a speed run.
I’m now five years on. Pain-free but changed forever. I call this is my “new normal.”
I still get a telltale tingle between my shoulder blades when I push too hard. My body’s built-in “back off” alarm. As a former bodybuilder, being told I can’t lift heavy anymore felt like a cruel joke.
These days, my workouts look like walks and daggy kitchen dance sessions with my daughter. I rest more. I ask for help. And I’m learning to let go of the woman who prided herself on doing it all.
This quote has become my mantra:
“Maybe you’re not healing because you’re trying to be who you were before the trauma. That person doesn’t exist anymore. There’s a new you, trying to be born. Breathe life into that person.”
What I Wish I’d Known
- Trust your gut (and your Googling). If your headache screams “liquid is escaping” and lying flat is the only thing that helps, push for imaging that looks at soft tissue. MRI’s is the imaging required to look for signs of a CSF spinal leak.
- Find your tribe. Online groups gave me tips hospitals never mentioned—plus memes that made me laugh when I really needed to.
- Post-patch isn’t the finish line. Healing dura takes months. Symptoms can ebb and flow. Elevate, hydrate, caffeinate, meditate (if that’s your jam).
- Redefine strength. Sometimes it’s deadlifting your bodyweight. Other times it’s cancelling plans and curling up with period dramas and peppermint tea.
I feel so incredibly lucky to have been diagnosed and patched within four weeks. Many wander the medical wilderness for months or years. If you’re still in the thick of it, hold on but continue advocating for yourself. There is light at the end of the tunnel, even if the tunnel is currently vibrating with tinnitus.
