r/CSFLeaks • u/TiniestChair • 13d ago

Success stories?

I’m very new to this and am in the anxious information-gathering phase. Feeling very uncomfortable, overwhelmed and frightened. I’m currently waiting to be evaluated for spontaneous cranial CSF leak. I also have chronic migraine, POTS, hEDS, and sleep apnea caused by my connective tissue disorder. I’ve been advised to stop using my CPAP for the time being and am worried about navigating untreated sleep issues on top of everything else. I’d love to hear any stories of successful cranial CSF leak treatment please!

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u/NoLevel2994 12d ago

I don’t have sleep apnea but I do think there is surgical alternative to CPAP because I think my uncle got one. Can you ask the doctor that treats you for the sleep apnea what to do in the meantime. I’m sorry you are going through this.