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CHMy brain doesn’t tell me to breathe… but this does!! I only got it 6 years ago… so how did I sleep before I got my diaphragmatic pacemaker?
not very safely. From a young age, my mom noticed I would wake up crying and be purple all throughout the night. Doctors wrote my mom off as a worried first time mom. From my earliest memories I would wake up throughout the night and in the morning with migraines from the central hypoventilation, doctors just assumed I had headaches and was afraid of the dark. The older I got, the more symptomatic I got and the consistent lack of oxygen at night started impacting my day. By high school I was waking up in the morning completely blind with extreme memory loss as if every day was from 50 First Dates. I was incredibly ill and on palliative care, those symptoms were just the tip of the iceberg. It would take decades of doctors trying to figure out what was going on to learn that my brain didn’t tell me to breathe during the night or day. The day my pulmonologist discovered I had central hypoventilation, he sent me home with a bipap and then a ventilator to breathe for me at night. All of my doctors and I know that me being alive today is nothing short of a miracle. Follow to learn more, check out my breathing highlight over at my bio, and comment your questions below! Video description: Cienna, a blonde haired white woman using a wheelchair shows her diaphragmatic pacemaker and talks to the camera.
@chronicallypersevering
