My Diagnosis of central hypoventilation syndrome was made in 2015 as secondary to my chiari malformation.

I remember the phone appointment after the tests…

I remember being told by the consultant that I didn’t have to worry about sleep apnoea as I didn’t HAVE sleep apnea!

I remember the leaflet I was told was coming in the post- I still have that inside my medical file actually. the leaflet header is hypoventilation….to explain the condition.

I also remember being told emphatically not ever to sleep without being on my NIV- my non invasive ventilator. my health trust then supplied the machinery.

I do remember once having a compliance trial for the ventilator in the local respiratory clinic… where I got to meet a ventilator and also had arterial blood gases done to rule out other types of “hypoventilation”… a ventilator is not a CPap… It breathes IN for you, and…