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The weather just turned nasty and yesterday I felt intense pain and pressure on my brain. I laid down which seemed to help a little and I took an ibuprofen. I felt a burning sensation on my left side of my brain and a lot of pressure. I woke up this morning with fluid in my left ear which I thought was odd I still felt the pressure but the pain was not as intense. My nose is like faucet when I bend over. I am also having trouble focusing my eyes. I have EDS and I am wondering what kind of doctor to see for this? Do I try to collect the drainage? Am I way off on what this could be any ideas would be great right now I am in a lot of pain and super freaked out. Side note: I do have an issue with my top vertebrae moving into my spinal cord and causing blockage. It also might be important to tell you I have mast cell disorder and take ketotifen, I’m not quite sure if that plays a role. I am also rereading the Driscoll theory and I am wondering if maybe I have a fluctuation from low to high. I am thirsty a lot and when I drink water I feel it in my brain. Hopefully someone can relate and she’d some light.
An ENT can evaluate if the drainage is CSF fluid by running a beta transferrin test on collected fluid along with a blood draw at the same time.
Maybe call your regular doc and see if you can get a sterile tube to collect fluid in, and see if your doc is able to just order the beta transferrin test with the associated blood draw. It seems like a pretty basic lab, I only went to ENT because I have very complicated headaches and I was looking for more opinions and they happen to be familiar with csf leaks. There are also ways to try to trigger more fluid called valslva maneuvers, usually involving straining or bending forward, but I would only do with a doctor helping.
I’d also be considering wearing a philadelphia collar (plus linings!) not a soft collar, for the cervical instability, to keep the passage of CSF fluid between your head and spine as open and free flowing as possible, particularly at night, when the integrity of your neck relies solely on ligaments, which cannot resist pressures from your pillow, or lack of muscle support in the neck area etc.
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