"please keep me updated about oximeters "
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How Long Has Everyone Been Using CPAP?
I'm going on 3 years of using CPAP. But I would say I've only been getting great results for about half that time. What about everyone else?
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Replies to This Discussion
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Permalink Reply by Denisse Streit on
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i've been using CPAP about a year and a half and have not been impressed with it. Still tired all the time.
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Permalink Reply by Carl Speas on
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I have been on bipap for 6 months. The jury is still out, not sure how well it is helping. I never sleep through the night. I have only slept all night 2 times in the last 10 years. Some days I feel better than others. I still get very tired in the late afternoon. Lately I have felt like packing the thing up and tossing it to the street, too much trouble for so little change. Then I remember my next step is a trach and I am not ready for that.
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Permalink Reply by Susan M. Nelling on
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My 1st year anniversary was yesterday. It is wonderful. haven't missed a night , but I did fall asleep one afternoon nap, WITHOUT my cpap, and felt scared and mad at myself when I woke. I know I need it all the time.
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Permalink Reply by susan mccord on
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I was on CPAP from July '09 until the end of January '10--totally compliant, felt better sleep-wise, but had extreme difficulty with sinus congestion, etc. for a good part of the time I was on it. In December it got to a critical level and stayed there. I continued with CPAP because I knew it was helping my sleep, but by January I was so sick I couldn't leave my house for the entire month of January '10. I saw an ENT specialist who ran all kinds of tests, was on a vigorous schedule of heavy-duty antibiotics for over 3 weeks, tired all the nasal irrigation stuff, etc., etc. All of which is to say, I tried very hard to stay compliant but d/c'd CPAP January 22nd 2010.
Finally got "well" sometime in February. Assumed I still had apnea but was scared to resume treatment. I kept thinking I'd get past it, but I never did. I've lost about 30# since I was diagnosed--weight is now within normal limits and has been for some time. I've had no apnea symptoms to speak of, at least that I'm aware of, since d/c in Feb. My cardiologist thinks my weight loss has helped me to improve to this point, even without CPAP.
Had another sleep study done in, I think, April 'cause I was nervous about being off. Did well, was put on CPAP with a setting of 8 (had been up to 10 prior), and stayed stable at 8. Since then every single appointment I've had scheduled with sleep doc has been re-scheduled by his office, (4) total.
Sooo, I'm STILL not on CPAP, and still scared of it because I was so sick on it for so long. (Never had sinus problems in my life, have had none since d/c CPAP and antibiotic treatment). Was told I have some allergies but have had NO symptoms of allergy of any kind all spring or to date this summer (I live in Indiana which is a highly-allergic place, apparently), but I still have no symptoms so I wonder about the validity of all that testing.
This long rant is why I've been off SleepGuide all these months. I used to be very active on here, but I feel guilty about coming on here saying I'm not in treatment when so many people continue to tolerate both CPAP and side effects when I can't seem to anymore.......I don't want to discourage ANYONE from treatment because I truly do understand the dangers of apnea, and I was absolutely compliant until I couldn't tolerate it at all.
I don't know that my even entering this conversation is gonna serve anybody well. I'll probably regret even posting it, but it's a valid question Mike's presented, and I owe a lot of people an explanation for why I just disappeared from SG. I actually feel pretty good--am not falling asleep during the day anymore, and sleep an average of 6 hours a night without CPAP. A year ago that was certainly NOT the case. I was a mess back then. I'm not a mess now, but I still have to wonder if I should be back in treatment......
My DME, who's been extremely helpful and supportive for over a year now, and is also on CPAP x 26 or 27 years by now, thinks I'd probably do better with auto bi-pap. I need an order to get one. I'm willing to try a new machine. Plus, my old one is no longer being made which means it can't be repaired. I spoke with sleep doc's office after they re-scheduled yet another appointment this week--explained that I need an order--they said they would get the order from sleep doc, but that they can't get me in till August.
Please......I'm pretty over the whole thing by now. I waited a long time to get into this doc initially because he's the best in town. However, being the best appears to mean he's rarely available as scheduled. I like him a lot and don't want to change, but I'm gonna have to. I feel like my "treatment program" is off the rails and has been for a long time.
Susan McCord
Susan M. Nelling said:My 1st year anniversary was yesterday. It is wonderful. haven't missed a night , but I did fall asleep one afternoon nap, WITHOUT my cpap, and felt scared and mad at myself when I woke. I know I need it all the time.
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Started on CPAP Oct 06. Was 100% compliant. Saw definite improvement - but not enough. Mar 08 I was switched to VPAP (bi-level). Definite improvement - but not enough. COPD complicates the issue. Have been 100% compliant until Jun 10. Aerophagia, reflux, nausea, bloating, headaches ... spent almost the entire month of Jun on just 2L of 02. Just recently started back on BPAP at reduced pressures, IPAP 10, EPAP 5 w/o 02. Sleep doctor wanted 15/11 or 13/9 and just ordered overnight oximetry w/BPAP and no 02, don't have results of overnight oximetry yet, but I also used my own oximeter same night and both BPAP data and personal oximeter results not all that good. Lousy as a matter of fact which is why I added the 2L of 02 for a nap today and will be using the 02 w/the BPAP when I go back to bed as well. This may well be as good as it gets for me due to the COPD. We shall see.
Despite all this - no longer get up more than once a night for a bathroom trip where I was making 3-4 trips before CPAP.
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Permalink Reply by Heather Dent on
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This may seem like a stupid question but does your personal oximeter take readings of your 02 level at random times during the night? If so, how many times during the night? Also, was wondering if your finger oximeter is accurate (did it give the same results) as the one they sent home for you to use? I think I would like to get one, but don't know much about them. I would like to see how much the CPAP helps my oxygen level, which was dipping to a low of 71% before I started CPAP treatment. Hope you don't mind me asking about this.
Heather
Judy said:Started on CPAP Oct 06. Was 100% compliant. Saw definite improvement - but not enough. Mar 08 I was switched to VPAP (bi-level). Definite improvement - but not enough. COPD complicates the issue. Have been 100% compliant until Jun 10. Aerophagia, reflux, nausea, bloating, headaches ... spent almost the entire month of Jun on just 2L of 02. Just recently started back on BPAP at reduced pressures, IPAP 10, EPAP 5 w/o 02. Sleep doctor wanted 15/11 or 13/9 and just ordered overnight oximetry w/BPAP and no 02, don't have results of overnight oximetry yet, but I also used my own oximeter same night and both BPAP data and personal oximeter results not all that good. Lousy as a matter of fact which is why I added the 2L of 02 for a nap today and will be using the 02 w/the BPAP when I go back to bed as well. This may well be as good as it gets for me due to the COPD. We shall see.
Despite all this - no longer get up more than once a night for a bathroom trip where I was making 3-4 trips before CPAP.
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Permalink Reply by Mark Douglas on
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Ive had it for 2 years. But 80% of the time, I did not use it, because it did not seem to make any difference. I was just as tired if I used it, or not. I finally took my machine in twice --- and they discovered it was defective, that it was blowing far under what it was supposed to, far under what it's guages were claiming it was blowing. They immediately got me a new one. Im using the new one 100% of the time, and it seems to be working.
That's just the problem - we are guessing if the CPAP works, or not, going by how we feel. Yes your friendly sleep doctor will put you on a sleep study waiting list, and for thousands of dollars, they will test you overnight. But there has to be a better way.
So I bought a oximeter to use overnight, that records the data. The meter seems to work fine, in that I've tested it against doctor's oximeters and its almost always the same results, or very close.
I got it for 200 bucks --- and have been able to check the results everynight. I was stunned to learned that results vary night to night. Most nights my oxygen is 95% very consistantly. But last night my average was down around 91, with momentary dips under 88. Very odd. I will have to figure this out..
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This is reply to Heather about how personal oximeter works. I checked mine against several doctor's units, and it was on the money or very similiar. It checks continually -- not random times -- and records your oxygen and pulse for whatever time you have pressed "record" for -- or don't record, just watch it, if awake. If you want to record your levels and get a nice detailed graph, just attach a USB cable to it, and press upload, and the software that came with it will show you the results. It's very cool. I got my unit at Walmart.com -- 200 dollars. I figured I could easily take it back if it didnt work.
This way you can do your own "poor man's sleep study" every night if you want. My unit had awful instructions, in the smallest book, using the smallest type they could find in China. The finger cup is a bit funky, but I got it all to work fine after a call to their support number.
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Delete Discussion I have been using CPAP for 9 years now.
When I picked up my machine the therapist told me to never sleep without it, even if it was a nap. I use it every night, but have fallen asleep watching tv without it.
The first mask I had was awful. When I changed masks I was able to sleep for 8 hours at a time. It was wonderful. CPAP gave me my life back.
I did not realise how bad off I was until after I started treatment. It only time I slept without it was when the power was off. I should have tried to stay up. Because I felt like I didn't sleep.
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Heather, you have to carefully read the information about any oximeter you are considering buying. Some, like my Nonin Onyx and like the ConTec CMS-50D do not have the capability to record data. On the other hand, the ConTec CMS-50D+ (note that Plus sign!) is a recording oximeter and does have software for downloading the data. I haven't gotten the printout from the "professional" overnight oximetry - but - spot checking over several minutes between the ConTec CMS-50D+ and my Nonin Onyx, they are right on w/in 1% or less of each other. And when I used to check my Nonin Onyx against the "professional" recording oximeters at Pulmonary Rehab it was always w/in 1% or less. We have to allow some lee way for clipping the sensors on different fingers or even different hands so 1% deviation is acceptable.
The SPO 7500 is also a reasonably priced recording wrist oximeter w/software.
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Permalink Reply by Banyon on
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"How Long Has Everyone Been Using CPAP?"
Not nearly long enough. Wish I had started 45 years ago!
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There are far MORE reasons for fatigue than apnea. My sleep doctor ( a CPAP user) admitted to me that he takes ProVigil daily, and has for years. So CPAP sure didn't fix his fatigue problem.
Fatigue is a complicated problem, and it takes a very good doctor to chase down the causes. A scary truth I found out the hard way ---fatigue that persists after CPAP can be an advanced warning for serious heart disease. While CPAP doesn't solve my fatigue, it seems to keep my overnight oxygen above dangerous levels, and that's well worth it.
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