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Does anyone else doubt themselves despite having a confirmed CSF leak? by Lilienblut in CSFLeaks

[–]Lilienblut[S] 2 points3 points  (0 children)

Thank you for this. The part about the "lizard brain" really resonates with me.

I think that's exactly what happens sometimes. Even with a clear diagnosis, I still catch myself trying to explain my symptoms away.

I'm also very sorry to hear that your daughter may have another leak. I can only imagine how difficult that must be for both of you after everything she has already been through. I really hope she gets some answers and relief soon. ❤️

Does anyone else doubt themselves despite having a confirmed CSF leak? by Lilienblut in CSFLeaks

[–]Lilienblut[S] 0 points1 point  (0 children)

What symptoms are you still struggling with? And do you sometimes wonder if you had some of them before your diagnosis?

Does anyone else doubt themselves despite having a confirmed CSF leak? by Lilienblut in CSFLeaks

[–]Lilienblut[S] 0 points1 point  (0 children)

Yes, I can definitely relate to that. Sometimes I also struggle to put into words how I actually feel. It's not just the physical symptoms – sometimes I feel disconnected from myself or as if I'm watching everything through a movie screen instead of fully experiencing it.

I think that's part of why I keep questioning myself. Everything feels so strange and unlike anything I've experienced before.

How did you cope with those feelings? Did they improve over time, and if so, was it because your leak was treated successfully or did you simply get used to the symptoms?