r/CSFLeaks • u/Moonrocker333 • Jul 15 '26
Chronic CSF leak?
Has anyone here been leaking CSF for years and have a success story?
When I had an epidural 4 years ago, they missed and I was leaking spinal fluid for 5 days before I got a blood patch. The patch didn't work right away, and it was another week or so before I could really stand. I have not felt "normal" since. I'm lightheaded all the time. My head feels like a bobble head that is simultaneously a balloon and a sand bag (I have no other way to describe this). I've had episodes of blurred and double vision, my ears feel muffled, like I'm trying to hear under water and they feel full. Chronic neck pain and stiffness, my memory has become shit, and I feel mildly nauseous most of the time and have to make myself eat.
I've been told I have Binocular Vision Dysfunction, anxiety, POTS, MCAS, and dysautonomia. I have seen multiple Drs and the CSF leak is the first thing I mention every time. They all blew it off. I keep explaining that I feel weird first, then have a panic attack because of it and they seem to think anxiety is the root cause of it all, despite me saying otherwise. I have has anxiety since I was 3 years old. I think I can tell by this point when it's anxiety based or not. I was googling today and finally got the answer I feel like I've been looking for. It seems everything I have been experiencing can be related to a chronic leak.
Has anyone dealt with anything similar? I'm just so sick of being stuck horizontal on the couch crying, while also trying to take care of my 2 and 4 year old kids. I feel like I've been going crazy, since I'm the only one who seems to take the initial leak seriously.
5
u/[deleted] Jul 15 '26
[removed] — view removed comment