Zero

So I'm at the "durable homecare equipment" (DRE) provider converting my CPAP rental into an auto-adjusting CPAP sale. And I'm talking to the very nice CPAP specialist person there and I'm telling her that I think that if I sleep a certain way than my sleep apnea is vastly reduced even without the machine. And she says, ...



"Oh yeah, belly sleepers don't register sleep apnea. In sleep studies they make you sleep on your back or on your side otherwise they don't get a reading."



"But ...," I say, "Shouldn't they measure a person in their normal sleeping mode?"



"Yes, but then they don't get numbers - people don't have sleep apnea sleeping on their tummies."



"But ...," I say, "Why don't they tell you that, so that people will sleep on their stomachs and avoid a potentially life-threatening disease?"



"I don't know. They should."



I remember when I was first diagnosed and I was waiting for my machine. I called the nurse that works with my doctor and I asked (via her answering machine), "Is there any sleep position I can sleep in while I'm waiting for my machine that is better for me?" (I had read on the web that sleeping on your side is better but I wanted to check it out with the nurse.) I never heard back.



I knew I had sleep apnea - my wife heard it at night. But I also knew that I “managed” the severity of it because of the way I slept. My weight is too high which is a symptom. But my blood pressure is very good, and my cholesterol is border-line, which is not bad, and my daytime sleepiness was not that bad (it would come and go). So I knew I was doing something that improved my situation.



When the CPAP specialist confirmed that it was possible to “manage” your sleep apnea simply by sleeping in a different position I felt pretty ripped-off. Not by her but by the entire sleep diagnosis system.



Now, months later, my machine is working well enough that if I have caffeine I start to get jittery right away. It's been a nightmare of self-diagnosis and making myself into a guinea pig to get the CPAP treatment to work. It is better to use the machine once you have adapted which can be very hard. But especially for people like me where the apnea is quite severe - 90+ events per hour when I'm on my back - it would be really good to know that if I'm traveling or I just fall asleep somewhere that I can sleep on my tummy and get a decent sleep.



In my case, the whole adrenaline withdrawal thing (which I suspect is a pattern with people with really severe sleep apnea, and the main reason they don't adapt to CPAP) was a whole 'nother nightmare. I took Doxepin to knock back the itchiness that was masked by my elevated adrenaline levels, and the final bit of adaptation was that I just put the machine on at night, and then the first time I woke up, I took it off, and got my normal crappy sleep, which included a certain amount of adrenaline boosting through the night. First I lasted two hours, then three, then four, then five, then six, then seven, then eight, then nine. I still need more than eight hours sleep but I don’t think that will be true for long.



In this way, I was slowly able to wean myself off the adrenaline. Adrenaline withdrawal is WAY more difficult to deal with than caffeine withdrawal.



I tried to call the nurse practitioner at the sleep center to ask for more information on adrenaline withdrawal yesterday because he is the only person who ever mentioned that to me. I can't find anything about it on the web. Maybe it's not even a real thing although it explains my situation rather well. But he's not working at the sleep center anymore.



*Sigh*.



I have a follow-up appointment with my doctor in a few weeks - it takes 4-6 weeks to get in to see him. Hopefully he'll know something about this adrenaline withdrawal thing.



But I guess it doesn't matter. I've pretty well licked it.



But the whole sleep apnea diagnosis and treatment process has been a cluster-fuck and if I hadn't put a lot of energy into this I would have been really screwed up.



You can see why some people don't like doctors and turn to any alternative they can find that sounds like it might be more pleasent than going to the doctor.



*Double Sigh*.



In the meantime – if you or your wife thinks you have sleep apnea and you can’t talk yourself into going into the sleep center (especially after reading this!) – sleep on your tummy.



© 2005 Stephen Clarke-Willson - All Rights Reserved.