Ramblings of a sleep apnea e-patient

I just read an article at University Health News (UHN), and found myself troubled at the ignorance displayed in the post. It suggests that even in the general medical arena there is a lot of misinformation and poor communication about sleep apnea.

Snorer with Unhappy Wife

This article’s click-bait headline misleadingly construes that supplements, diet and exercise can cure sleep apnea. There is no cure for sleep apnea. While there are operations that may help with nasal obstruction, most of these are only successful part of the time and often only temporarily. And some of the operations fail miserably. So effectively, under most circumstances, I repeat: there is no cure. If you don’t snore and you have open-airway apnea (non-nasal-obstructive) or worse, central apnea, then regardless of your exercise or diet, you’re still going to have sleep apnea, and it might go undiagnosed for a long time. It’s a little bit like suggesting that diet and exercise will cure type 1 diabetes or hypothyroidism.

The images they chose for the article were even worse. In both cases, it’s the typical woman with her head wrapped in a pillow as she endures pain or horror at her loudly snoring bed mate. Yeah, that’s going to make everyone with sleep apnea feel happy about inflicting discomfort on those they love. While snoring is a hard thing to endure, you can actually die from sleep apnea. Maybe the horror of a chronic malady could have been approached without inferring the horror of inconvenience to others.

If your body is dipping below 90% SP02 on a regular basis, it’s going to take a toll. Sleep apnea, in all its forms, does that. Most people are not given proper education on how to use their machines. The first time I went in to Apria have my machine titered, the specialist hadn’t ever seen a cpap machine before. It was obvious that the specialist hadn’t even been shown how to use the machine or the masks by a company rep with actual experience in titering the machine or fitting the mask. I took over titering my own machine because I wasn’t going wait for some clueless specialist to do it for me and get paid for it. It’s like asking a diabetic to have a medical professional titer their blood glucose level at a hospital every four hours. It’s entirely impractical.

People stop using CPAP for these reasons:

  1. It’s leaking at the mask. If it’s leaking, you’re not getting therapy.
  2. It’s the wrong pressure. That happens a lot at the beginning. That’s easily fixed by learning to titer.
  3. It’s the wrong mask. Most people need full face, not nasal. Just about everyone mouth-breathes during CPAP because — wait for it — positive pressure causes mouth leaks. Patients should start with full-face first. Only after they’ve mastered that should they even consider nasal masks.
  4. It’s the wrong type of machine. Most people should have an APAP – not a CPAP. APAP’s are easier to self-titer and lock in to a sweet spot of pressure preferences once you get your AHI down.

Here are some considerations about sleep apnea that the general public may not know:

  1. Not every sleep apneac snores. I don’t. I never have. That’s probably why I went undiagnosed for 40-plus years.
  2. Not all snorers have sleep apnea.
  3. Over a lifetime of not being treated, sleep apnea can cause significant chronic health concerns, all mostly due to a lack of consistent oxygen flow to the lungs.
  4. Not all sleep apneacs are men. More than a few are women.
  5. Titering a CPAP machine is probably as easy as titering blood glucose for a diabetic.

There is no “cure” for sleep apnea. There is only management or the lack of it. The only way to manage sleep apnea with a CPAP is to give proper instruction about titering the machine and fitting the mask to the person using them.

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