Bedridden at 28: A Hidden CSF Leak Reshapes a Young Woman's Life
A 28-year-old woman, Meredith, describes a life-altering journey after a thunderclap headache and seizure led to a spinal cerebrospinal fluid leak caused by a CSF-venous fistula. The condition leaves her largely bedridden, with upright activity triggering debilitating pain and 95% of days spent lying down. Despite multiple treatments, including blood patches and a brain stent, the fistula makes sealing leaks difficult, and her connective tissue disorder complicates care. She documents her experience on TikTok to raise awareness, push for more research and better treatments, and find moments of normalcy with family and friends.