I have a form of central sleep apnoea, which means my upper airway stays open during sleep, however my body just doesn’t take breaths, leading to significant and sudden hypoxemia within a couple of minutes of falling asleep. These two-three minute sleeps was what I would have for maybe two hours, then there would be so much adrenaline coursing around that I was shaking and wide awake (despite being extremely fatigued and exhausted). Six hours later, the same thing: collapse pretty much where I was standing because I’m so tired, and be asleep for two - three mins, while not breathing, and each wake cycle I’d be gasping for air and my heart racing and shaking my entire chest (I could feel the blood pressure was so high, I was sensing my pulse in the arteries in my legs, arms, and in my brain).
It went on until my body was unable to produce enough adrenaline to wake me, and I would start to go four-five mins asleep with zero breathing.
I honestly thought sleep would end my life, but when I explained this to a colleague (I was working in the sleep technology industry) he said I should test a few non invasive ventilators - so I did.
These machines work on the correct breath rate, and correct volume of air, and provide the pressures (IPAP and EPAP) necessary to ensure adequate gas exchange in the alveoli.
Monitoring oxygen shows I’m not critically and dangerously desaturating anymore, and I have been using ventilation to keep me alive for the last 9 years (used during every second I’m asleep, as well as when I can’t efficiently breathe during the day (sustained sitting position at my desk, etc - I just put the vent on and I can breathe while I type..I work from home).
It took me around 5 months to become completely accustomed to ventilation (I started out being awake for hours on the machine because it was so different from the usual absence of breathing that I would fall asleep with), however after that time, I got so used to it that when I feel drowsy I actually ‘crave’ (similar to a food craving when hungry) the support to breathe that it provides. I still use the pulse oxymetry lead a couple of times a week (the lead connects to the machine, like the ones at the hospital with the fingertip lead that plugs into the monitor), just to make sure the breath rate and volume of air is working to provide enough air movement to keep oxygen levels normal.
Before using, when I woke up after a few cycles of zero air, my hands, lips, tongue, and legs would be a grey-blue colour and be painful like when you’ve cut off the circulation to limbs, and now, none of that occurs.
In terms of what I call metabolic adjustment, it took my body around two years to get back to proper cellular metabolism of oxygen (when chronically low in oxygen, the body makes adjustments in the way cells function and replicate), but once that recovery took place, I started to really feel like I was alive again.
I used to have such debilitating headaches from low oxygen that I would sometimes not be able to hear, lose most of my vision, and be unable to walk in a straight line (I would crawl from the bedroom to the bathroom, the room spinning like a carnival ride the entire way).
A savvy sleep doc prescribed a ventilator once I showed him the vent statistics from the one I had used from work, saying there was no need to wait for a diagnostic sleep study - the report clearly showed only 4% independent breathing, and he said to me he wondered how I was still alive and hadn’t had a massive stroke or heart attack.
So that’s how it was for me with a complicated form of central sleep apnoea. I would not wish it on anyone, because it’s so frightening, and very concerning for health.