Lived Experience Forum

[ClockFace]

For years Ive struggled with poor sleep, feeling tired during the day, etc. I have complained to doctors, seen a couple of sleep specialists and nothing. It all gets laid at the feet of my sleep apnea and I need to keep to my sleep hygine (which until recently I was really good with). 

Some time ago things became really bad, I was unable to sleep and when I did it is for a couple hours at a time. I went from day time sleepy to having to sleep during the day when I can, I sleep whenever I am able to. 

My new doctor took me seriously and got me to a specialist who also took me seriously and as it turns out after nearly 20 years on a CPAP she was appalled how much had not been done. She organised a proper inhouse sleep study, which Ive done. I had never had one of those, just at home ones. She did an arterial blood gas (AMG) as well. She was able to work out that I dont have enough oxygen in my blood when I sleep, its low after I wake up (ABG) and that even with proper treatment and varying pressures I keep having apneas so at this stage she is thinking I have Complex Sleep Apnea. 

I have to have another sleep study at home this time, without my machine as she doesnt have one of those on record. I have to do some more home reporting and once all thats done Ill see her again hopefully for a final ruling of what she has decided is wrong and how we treat it. She has talked about me needing oxygen therapy while I sleep.

Im glad we are finally getting some answers and that in the future (8 weeks till I see the specialist again, seems like forever), I may get a treatment protocol. It really cant come soon enough to be honest. Im so sick of feeling like Im on the edge of falling asleep all the time, sleeping at random times day and night but never for long and never left with a satisfying feeling, like Ive actually had some real sleep. 

[tyme]

Thanks for the update @ClockFace .

It sounds like things are still ongoing in terms of your health. 

What are some things you've been able to do to keep you going considering how hard things are.

[ClockFace]

@tyme 

Ive been focused on my diet stuff and organising my life. I feel like having control over as much as I can helps me limit my exposure to the stuff I cant control. Its probably not 100% healthy but having the structure in my life does help keep me calmer. Im not locked into it though, like if I dont do all my tasks or at the time I plan its not the end of the Earth

A lot of it is just I have no choice but to keep push forward

[PinkFlamingo]

Hey there @ClockFace 🙂

I’m a former sleep tech and I used to conduct the tests for detecting complex sleep disorders of both breathing and neurological issues. 
Many people would come in with un- or underdiagnosed sleep problems, and many of them weren’t just related to one aspect of physiology. 
I spent years working nights only, monitoring and reporting on a variety of sleep study types in-lab (where you go sleep there while you’re wired up and monitored directly overnight). 

I myself have a complex disorder where I fail to breathe when asleep (not due to mechanical factors ie: weight, but due to neurological and diaphragmatic damage), and as a result oxygen drops significantly within minutes to critical levels. 
I felt awful, and it took one smart lung specialist to recognise what was happening, and he agreed to trial a non-invasive ventilator immediately, without a sleep study on it, to improve my outcomes/avoid significant anoxic injury. 
So, I sleep using (as well as during the day in moments of fatigue) a timed rate, volume based algorithm (instead of pressure-based), which breathes ‘for’ me, whenever I fall asleep, pushing in air to the required volume, letting out the required volume, with a back up breath rate of 12 breaths a minute. Pressure is simply a consequence of provision of volume at the given rate. 
The reason I mention it is because it’s usually anaesthesiologists who are trained in this kind of ventilation (because it’s used under anaesthesia when someone is under the effect of muscle relaxants and cannot ventilate independently), and each respiratory specialist I spoke to prior to finding my really smart lung doc had zero understanding of my breathing problem (even though I was explaining it to them). 
I would sleep a few minutes, and wake up with critically low oxygen levels (SpO2), and this would go on perpetually. I guess I would be sleeping around 30 mins each 24 hours, broken into 2-3 min stretches. 
Exhaustion was an understatement: I was not properly functioning. 
Oxygen therapy was something I considered, however in my own situation I weighed up the following: if my lungs are transferring oxygen across the membrane into my blood without issue, and besides just not breathing my lung tissue is functional, I chose a mechanical ventilator instead of oxygen, because oxygen therapy was more harmful with more risks in my case, as opposed to mechanical ventilation on room air. And also, I could have oxygen flowing at my nostrils at a really high flow rate, but it would all be for nothing unless I was actually breathing it in - not breathing means all that oxygen would just dry out my nostrils and go no further. The other deciding factor was that if I was using awake effort to breathe and I was able to increase SpO2, then oxygen was transferring across the membrane inside the lungs efficiently, so adding supplemental oxygen didn’t make sense.

Side note, I looked after someone who had emphysema, where their alveoli (bit where oxygen and CO2 diffuses back and forth across the membrane) were significantly damaged: less functional alveoli = requirement for more oxygen concentration to be supplied inside the lungs for the remaining alveoli to get the same volume of oxygen/CO2 transfer..in basic - not technically correct - terms. I didn’t have damage, so I needed volume and breath rate only…if that makes sense?
On vent, I sleep usually a few hours with breaks in between (high pressures sometimes wake me as the machine tries to provide the proper volumes in deep sleep stages), but it’s entirely better than the state I was in previously. 
I hope this is helpful in kindly letting you know you’re not alone, and that there are a multitude of solutions in the varying types of equipment out there beyond the standard CPAP/APAP world 🙂🌺