u/maybegoth

i have waited for 2 days to be approved in the CSFleak group, but since my situation also involves acquired chiari i hope it's also okay to look for answers here as well.

Started having symptoms in early/mid 2023 that was diagnosed as anxiety for roughly a year before I pushed for brain imaging and they found chiari. Another year or so of waiting for doctors and tests before I got to see a specialist and he noted a brain sag so I'm suspected of having a spinal CSF leak caused by a microdiscectomy I had in 2022.

I never really had terrible positional headaches like most leakers. I get sharp pains at the base of my skull that will radiate. Lately I noticed if I am sitting upright for too long I get very dizzy and have to lay down. My main symptoms are dizziness, brain fog, exercise intolerance, palpitations, tremors, profound weakness in my arms and legs, panic attacks that come out of nowhere, difficulty breathing, and brain fog/forgetfulness

Im very fearful since this has gone on so long that I no longer have the chance at living a normal life. I used to be very active and found so much joy in the world around me but for the last year I've been stuck in my bed for 24 hours a day. I can't even stand long enough to shower, and recently I can't wash myself in the shower even while in a chair because I get very weak and have pre-syncope episodes. I just need some relief and I'm so afraid I'll never feel okay again. Every day feels like I am dying.

i know it's a long shot but i'm hoping someone in here who has experienced similar symptoms is able to give me some input on how they're doing.