3 1/2 years on CPAP and having problems

[Sheila1229]

10 years ago,when I had back surgery and was in ICU, my physician told me I needed a sleep study and I had one 30 days post op. Never fell deeply asleep - pain issues- so it was negative. Took another one 1 year later (on my dime) again, again, I never fell deeply asleep. Symptoms were: snoring!!! restless legs, needing to take frequent naps when commuting back from work (100 freeway miles each way). I eventually was given AMBIEN to make me sleep. Finally lost my sense of taste and smell (and hubby says hearing) so I consulted a ENT dr. The minute he heard of my sleep apnea testing, he ignored the smell and taste and ordered me a sleep study in my own home which is at 7500 feet up in the mountains. I was told that I could take my normal dose of ambien (5mg) The test was positive for moderate to severe sleep apnea. Was set up with Respiron Remstar Plus with CFLEX with heated humidity. The setting was 4cm and I use the ramp feature to fall asleep. This has been since April of 2012. Dr never repeated sleep study or even told me to come back for a follow up. Started with a new primary physician and he told me 4 cm was "nothing" ! Also was removed from ambien when the government decided it was not healthy to take every night! So now I take 0.5mg of Klonipin if I can't fall asleep but CPAP did help falling asleep easier. I used my CPAP religiously for about 3 years but now find that I have to take it off half way through the night due to 'burning' around my nostrils and I look like a coke head!! I am 65 years old and it is not a look I like. I use the small Swift for her nasal pillows. On another note,, My husband has same ENT Dr, had nasal septal repair then a sleep study, Placed on same CPAP, required to repeat sleep study then placed on 2L oxygen for sleep. Study has been repeated every 6 months since. (2 1/2 years) He was given lunesta and continues with it. (He was an airline pilot and this sidelined his career) Now he is on medicare also with the VA as a backup and they provide him everything he needs. My script is through AEROCARE and I haven't heard from them in 2 1/2 years! My husband's is through MEDCO and they visit with him several times a year mainly for the oxygen. I have tried to switch providers but until I reach the 5 year mark, insurance will not allow this.

My questions: Is 4 cm really bare minimum? What is the range? What could possibly be causing the burning and redness? Any suggestions for soothing my nostrils?

[Julie]

4 cm is the default low setting for almost all machines (1-2 use '3' as the low), but the great majority of users find it close to impossible to breathe at and begin at least at 5, 6 or 7, though very many need a higher low setting.

You can try Lansinoh cream (baby aisle in the pharmacy) for your nose, but there are very many masks out there to try, so you could browse Cpap.com for lots of info on others.

[kaiasgram]

Your primary physician is right, 4 cm is the lowest pressure setting available on almost all machines, and very rarely would it be the prescribed pressure on a fixed-pressure CPAP machine. In fact, you mention using the Ramp feature, but there's nowhere for Ramp to go if your prescribed pressure setting is fixed at 4 -- the Ramp feature allows you to start at a lower pressure and build up over a period of time (5 or more minutes) to your prescribed setting. If your prescribed pressure is 4 cm, then Ramp is irrelevant.

It's common to prescribe 4 cm as a minimum pressure and some higher number (20 is the highest pressure setting on most CPAP machines) as a maximum pressure on an auto-adjusting cpap (APAP) machine. You're positive about the make and model of your machine, and positive that your prescription setting was 4 cm?

What's more, the Remstar "Plus" CPAP machine does not record any treatment information, so your doctor has no way to evaluate if the machine is actually controlling your apnea -- no apnea event information, mask leak information, or any other data that matters to the quality of your therapy. It has only an 'odometer' meaning it shows how many hours the machine has been used. In other words, 'patient compliance' data only. So if your previous doctors were having you bring in the smart card from the machine and telling you you're doing fine, they were cheating you because the only data on the card is a count of hours.

So you've been using a machine at the lowest possible pressure setting AND no way to see if it's actually working. And sadly, your husband was given the same "brick" of a machine.

Can you clarify -- are you still using the "Plus" machine, and what is your current pressure setting?

The soreness/burning on the nostrils -- in addition to trying a scant dab of pure grade lanolin (Lansinoh) at night, you may also find that using some 99% aloe vera gel during the day further helps with healing. I don't know why this problem would appear with someone who's been using a mask for several years, but if it's just some mask irritation those two suggested remedies should take care of it. And be sure you're not overtightening the mask and that you're using the best size nasal pillow (you'd be surprised how often people find that a size larger or smaller works better than what they originally thought would work best).

[lindalrc]

Have you changed out either the mask or the silicone components since you first got them? Silicone slowly degrades in contact with skin. The DMEs say replace at 14 days; many on this forum say they use components for months. But eventually components degrade and get hairline cracks and develop leaks. The leaks can lead to tightening to over tightening to sore nasal areas. So besides looking at different masks, consider what may be an issue with the one you have.