I believe it is a CSF leak, like you describe. When I watched your YouTube videos that was a HUGE symptom that stood out to me. I’ve been carrying tissues around with me everywhere for a couple years. At first I thought, “Oh, it’s allergies,” and I’d take a zyrtec and write it off. Then I’d think “Oh, it’s just cold out,” and blame it on the weather (I live in MI, weather is highly unpredictable here lol). Nothing I did made the clear liquid stop running, though. I read a news article about a man in the UK who’d had a runny nose for years, and doctors found a tiny hole in his nasal passage that was leaking CSF, and I freaked out a little about that haahaha.
But it’s not a coincidence that my runny nose is often accompanied by a full feeling in my head and will progress to an occipital headache after a couple weeks. My doctor hasn’t even looked into it, I’m sure. Before I saw him, I thought he was going to look into EDS and the diagnostic criteria for it, and boy was I wrong. It’s still another two weeks before I see him again. I’m staying hopeful that now he’s seen I don’t have lupus or rheumatoid arthritis, he’ll take me more seriously.
I have this issue with doctors (and many others) where I look like I’m 17, but I’m actually 31, so they see this young, healthy looking girl and think, “There’s no possible way she knows what she’s talking about, she’s a child.” It’s frustrating. I’m glad I have a couple weeks between now and my appointment so I can get my evidence together into a neat little folder and go in and hit him with some hard science. 🙂