Central Hypoventilation Syndrome.

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 it breathes OUT for you…so you really need to let it become your breathing.

it is a horrible device, but my options are zero…

“Ventilatory support is used to assist with breathing and is almost essential for survival.” as NHS explains it.

over the interim years, I have learned more about the machine and the condition.

Non Invasive Ventilator

BiPAP

NIPPY.

hypoventilation

It can cause hypoxia if settings are incorrect.

How often would they need be assessed???

if the settings are wrong, and your blood gases fluctuate, you may have hypoxia.

“Although mechanical ventilation can be a life-saving intervention, it is also known to carry several side-effects and risks. Adequate oxygenation is one of the primary goals of mechanical ventilation. However, while on mechanical ventilation, patients frequently experience hypoxic events resulting from various causes, which need to be properly evaluated and treated.” NHS.

Hypoxia can cause organ failure. That is not a comfortable concern to manage at home.

Face masks are incredibly challenging as I also have a problem with facial muscles and I need this machine to make a seal to breathe when I am asleep.

it isn’t easy to realise that your brain could simply forget to breathe and you wouldn’t know it.

nobody should see their own sleep studies have results in oxygen readings less than 60%- i have.

You don’t want to worry about the efficiency of the face mask.

You need support…ongoing support.

NOBODY else who i know or have met, or found through rare disease partnerships has this condition. It is a lonely, nerve-wracking station.

Sleep studies are essential as settings need to be accurate!

I have to rotate facemasks to best fit my facial palsy issues at the time.

I NEVER have an unbroken night asleep… never.

NOBODY can imagine the sensation of using a ventilator… but I don’t have a choice.

IT is like being smothered by a live octopus… the masks many straps… my current one has 7 straps….constantly being adjusted, the seal varying, the sensation is at times claustrophobic even years into using it. it is an ongoing struggle for me as I waken due to pain, and my “tolerance” or “compliance” has to start all over again…