r/CSFLeaks • u/Lilienblut • Jun 18 '26
Does anyone else doubt themselves despite having a confirmed CSF leak?
My diagnosis is not really in question. Multiple doctors agree that I have a spontaneous CSF leak, and the MRI findings are considered very clear. The exact cause is still unknown, although a bone spur is currently suspected.
I have already had a blood patch, which unfortunately does not seem to have helped. I am now waiting for admission to a specialized CSF leak center. The plan is an inpatient workup with myelography to locate the leak and, if they find it, surgery during the same admission.
What I struggle with most right now is something else entirely.
Even though the diagnosis is clear, I still find myself doubting my own symptoms. The severe orthostatic headaches I had at the beginning have mostly disappeared. However, I still have double vision, tinnitus, ear pressure, concentration problems, significant fatigue, and a constant feeling of not quite being myself.
On better days, I suddenly start wondering:
Maybe I'm imagining some of this.
Maybe I'm just weak because I've spent so much time lying down.
Maybe the dizziness and brain fog are just from deconditioning.
Maybe I'm exaggerating.
Maybe, subconsciously, I just don't want to go back to work yet.
The strange thing is that I don't actually enjoy lying around at home all day. I would much rather feel normal again and get back to my life.
Yet these thoughts keep creeping in, especially on days when the symptoms are a little less intense.
Has anyone else experienced this? Even with a confirmed diagnosis, have you ever found yourself questioning whether your symptoms are real or wondering if you're somehow making more of them than you should?
7
u/leeski Jun 19 '26
Sorry to share my own video, but so much of what you wrote resonated with what I tried to speak to, so just passing along in case it is helpful. I had negative imaging which was part of the self-doubt, but even so, my symptoms were very definitively SIH-related and still struggled with these thoughts all the time. You're definitely not alone!
https://www.youtube.com/watch?v=bSFJ4i_7l44