Day 23: I’m stranded on an island of pillows and sheets. I think the leak has stopped, but to be safe, I must stay here for a few more days.
While most Minnesotans are floating on lakes, here I lie on bedrest for a cerebrospinal fluid (CSF) leak that started last month.
Day 1: My right ear is taking on fluid. Just the one ear. No sneezing, no coughing, but maybe the start of a headache.
Day 2: I pooped, then fainted. At least, I was able to pull able my pants before I fainted. I do not want to die like Elvis.
Over the next two weeks, the pain at the base of my skull and behind my right ear became more severe, like someone had swung a bat at the back of my head. None of my mast cell medications provided relief. As an experienced medical detective, I retraced my steps and remembered, the day before my symptoms started, I had a chiropractic adjustment. The chiropractor had used her activator, a small metal device, on right side of my neck, just below my skull, the same spot as my headache.
My chiropractor specializes in Ehlers-Danlos syndrome (EDS), a connective tissue disorder associated with mast cell disease. Over the past year, I’ve experienced more joint subluxations and my chiropractor gentle guides my bones back in place. However, I know neck adjustments, even gentle ones, can be risky for EDS patients.
Day 13: I think my brain sack is leaking, I’m just not sure how to tell anyone.
Fully aware nobody likes a self-diagnosing patient, I emailed the facts to my primary care doctor without my hypothesis. She responded, “I have no recommendations at this time. Try more [mast cell medications].” At this point, the pain was causing me to vomit. I only felt relief after laying down. Classic symptoms of a CSF leak.
Day 14: The ER doctor is pretty sure I won’t die tonight.
In ER, my doctor was concerned about a stroke or vascular dissection. When I suggested a CSF leak, he said that wasn’t a possibility, because I hadn’t experienced a head trauma. When I told him about my chiropractic adjustment and EDS, he paused and then left room, I think to Google. My MRI and bloodwork came back normal, and he sent me home. I really should have asked to see the neurologist on call.
Day 16: I yelled, “Brainjuice! Brainjuice! BRAINJUICE!” But the pain did not stop.
I instituted my own bedrest until I could see a neurologist. It’s not like I really had a choice. The ER doctor prescribed pain medication, but laying down was the most effective way to relieve the pain. My friends with EDS were also convinced I had a CSF leak, while the rest of the world considered I may be losing my sanity.
Day 21: The neurologist says I probably have a CSF leak.
The neurologist believes my CSF leak will heal on its own with more bedrest. It is nice to be validated, but mainly I am tired of enduring this medical circus. My healthy friends aren’t sure what to say, and neither am I. I’ve accepted becoming allergic to the sun, delicious food, and most people. But now if I poop too hard my brain may come through my ear? That’s where I draw the line, folks.
So, I’ll be in bed for the next few days, trying to focus on my gratitude for the Internet. The Internet that provides me with unlimited movies, TV shows, and books without having to lift my head. The Internet that allow me to share my jokes on social media, so I don’t have to laugh alone and continue to question my sanity. The Internet that provides me with research papers and fellow patients who urge me to advocate for myself when my brain juice leaks.
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2022 May Update
Evidently, my body decided to observe EDS Awareness Month by blowing my epidural blood patch. How? Not surfing, skating, nor spinning–I blew my patch torquing my neck for an ab exercise. While I’m pissed it popped from something I don’t even enjoy, I am incredibly lucky my patch lasted 4 years, not to mention for 6 months of wild remission adventures.
My original CSF leak probably could have been avoided if I had better MCAS treatment sooner. Mast cell chemicals can cause both connective tissue fragility and intracranial hypertension (high pressure in the brain)–a dangerous water balloon situation. While an EDS knowledgeable chiropractor contributed to the leak, I wouldn’t have even seen a chiropractor if my mast cells were under control.
It has been much easier managing the symptoms of a CSF leak in remission than in 2018.