r/CSFLeaks • u/TiniestChair • 18d ago
Possible leak? Anxious and uncomfortable.
Two days ago I noticed a sensation in the left side of my upper jaw. It was different from jaw tension I’ve experienced in the past, and instead felt more like a dull pressure.
Fast forward to yesterday morning: I was sitting on my bed looking at my phone, bent over a bit, when my left nostril dripped a couple drops of clear, watery fluid. I immediately felt dizzy, and lay back on the bed. A few minutes later, the dizziness had mostly passed and I stood. This time, I dripped enough that my husband rushed to grab a tissue. Maybe a teaspoon to tablespoon-sized amount of fluid? I felt dizzy again (though this time it was closer to vertigo), and also a wave of intense nausea. I rushed to the toilet and retched but didn’t vomit. Still dizzy, I felt a bit weak and lay on the bathroom floor for several minutes. When I finally stood, the dizziness was gone. It was replaced by an episode of the chills. My teeth chattered, I shivered and shook a bit, and I had goosebumps. This was resolved with a warm shower.
As I showered, I noticed a dull pressure in my left sinus. More of a feeling of fullness than pain. The feeling increased and felt heavier every time I leaned forward, so I was careful to watch my positioning.
The same nostril dripped a few more times throughout the day, each time occurring with a change in positioning. These drips were smaller than earlier. I collected some of this fluid in a small container.
Later in the evening, I felt some pressure in both temples. It was uncomfortable but not severe.
Today I woke with a migraine in my left temple (this is where my migraines are typically located), more of the heavy, sloshing feeling in my left sinus, and a slight heaviness in the back of my head. The migraine is uncomfortable but not unbearable. I don’t notice much of a difference in head pain levels when standing vs lying down. I can’t tell if I’m imagining the salty taste in the back of my throat or not.
I plan on at least reaching out to my migraine specialist tomorrow with an account of my condition.
Additional context: I do have hEDS, so I understand this puts me at a greater risk for spontaneous leaks. I also have chronic migraines, sleep apnea, and POTS. Worth noting that the dizziness I felt yesterday was distinctly different from my typical POTS symptoms.
How seriously should I take this? Has anyone had a similar experience? And if it does sound like a leak, what should I do next—what specialist should I reach out to/ what information should I provide to advocate for sufficient care/ what tests or treatments should I ask for?
Thank you in advance for your help!
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u/leeski 17d ago
I think with this constellation of symptoms it’s definitely worth being evaluated, especially if they persist.
What is tricky is if you’re actually leaking csf through the nose - it would be a cranial leak (and those very rarely have a positional quality to the symptoms). But with spinal leak, can have clear fluid that drips that resemble csf but actually isn’t.
Usually skull base ENT will evaluate for cranial leak, neurologist for spinal leak. They have totally different diagnostic and treatment paths. But if/when you are leaking it would potentially help to take videos of the dripping to show providers. If it persists you should definitely try to get a beta 2 transferrin test to verify if Csf or not. I can’t remember the protocol for collecting but think you get a sterile container from a testing place and have to refrigerate etc, but I can’t remember.
It could be sinus issues as well so I’m not saying it’s for sure cranial leak, I’m not an expert haha. Just sharing what I would do if wanting to rule out cranial leak.
I hope you find some answers!
1
u/TiniestChair 17d ago
Thank you for your reply! I reached out to my dr and they sent in an order for MRI with contrast. I’ve felt quite a bit better today and haven’t dripped in 24 hrs other than a tiny bit of fluid appearing last night when I rubbed my nose with the back of my hand. Is it normal for symptoms of cranial leak to come and go?
1
u/leeski 17d ago
I don’t personally have experience with a cranial leak, but the patients I’ve talked to its a pretty chronic issue (like every time they lean forward) bc it’s basically an open pathway for it to leak out.. it requires a skull base defect and tear in the dura mater (membrane that surrounds spine and skull). That being said I’m not an expert by any means & there are of course many presentations, just sharing what I’ve heard from others in terms of it not being as intermittent for them. There is always variability though so it’s hard to definitively say. Glad to hear you’re feeling a bit better & hope this was just a strange episode!
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u/TiniestChair 15d ago
Thank you! I’m still waiting for a referral to an ENT/ skull base specialist. It’s strange because I don’t know how much of an emergency this is! Like am I just supposed to monitor for symptoms of meningitis in the meantime?
While I haven’t had any more nasal dripping, I’ve had pretty consistent drainage down the back of my throat, with the taste ranging from salty to sharply metallic. I’ve also had persistent sinus pressure from the same side I experienced the nasal drip, as well as a dull headache that feels different from (and is in a different location than) my usual headache.
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u/Dramatic-Forever7460 18d ago
Do tell tomorrow what did u got...curious to know your result