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.
Related blog posts
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.
I am so very sorry………this sounds absolutely horrible.
“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.” This made me laugh. Snark is the best way to deal with chronic illness (and all of life, really). Hope everything stabilizes for you real soon.
Exactly. Thanks for reading.
Pretty sure I’ve had a similar intermittent leak in my right ear since childhood, was misdiagnosed as chronic ear infections for about 2 decades. Had lots of neck adjustments :/. It’s never fully healed and the headaches are a b!tch, but it’s better than it was a decade ago. Hang in there. And take care of yourself! We are our own best advocates.
You know my pain! Perhaps a blood patch would help at this point? I will get one if it doesn’t heal within 4-6 weeks.
Thanks for writing about this. I had a similar experience. I had gone for a chiropractic adjustment as well. I had leaking from one side of my nose that was a LOT. Looking it up on the Internet came across CSF leak. I was told to go to the ER if I thought I had this by my then primary care. ER treated me like a complete idiot. No trauma , no headache. To this day I still do not know but still am having intermittent leaking on just one side. I guess more symptoms will appear if it is CSF. I have not been diagnosed with EDS , only MCAS but who knows? Only God knows and I am putting my trust in Him. Love your sense of humor!
I have had CSF leaking out my ears and nose for over a year, nobody believes me but I don’t want a spinal tap anyway.
I’m also autistic & my sensory difficulties have made my MCAS a living hell I would not wish on the most evil of persons.
It’s not an easy journey, but you’re not alone! I was lucky I able to avoid the blood patch.
This is awesome! Snark for survival! Thanks for sharing your story!
I’m laying here with a self diagnosed csf leak contemplating my sanity, this was so comforting to read. I’m sorry you’ve dealt with this, but so thankful to not be alone!
I’m so sorry. It’s a process, but it can get better! Audiobooks helped me stay sane.
Hey, I’m so sorry for what you’ve been through, but thank you for the laugh. You’ve got a gift. I landed here newly diagnosed with MCAS and googling CSF leak, because my Mom had one years ago— and I suspect she spent her whole life with undiagnosed MCAS.
My Dad diagnosed her CSF leak with… glucose test strips. Eat something sweet, wait 20 minutes, check the drip. If the fluid has glucose in it, it’s from your brain. Mucus and other kinds of discharge have no glucose in them. My Dad’s a retired physicist and, well, a guy – so doctors believed his theory and my Mom had surgery to repair a spontaneously formed defect in her skull. Hope this home test might help someone else in the future!
Thank you for writing this blog. I have Eds, mast cell, just had brain surgery and now they think I may have had leak for years that was not resolved by the brain surgery at all – gives me hope that there are other people out there living, and laughing, through this life
Thank you for reading!
Holy. Crap. I have this exact pain. Base of my skull, huts so bad. Vomiting because of it. Heat intolerance issues. Laying down/crashing is the only thing that helps. I’m ‘holyshitting’ over here. This came at the *perfect* time I see my doctor Tuesday. I never thought it could be a CSF LEAK!
I hope you get help and relief soon!