I think I can quit CPAP ? ? ? ?

[mrnetwurm]

Hello folks, I haven't posted on this forum in quite a while. I want to tell you where I've been and what I think I'm going to do next:

In 2010 I had gained about 20 lbs and my wife had started complaining that I was snoring. (I was 46 years old) After gaining a few more pounds, a sleep
study indicated that I needed CPAP. My blood oxygen was falling as low as 79 % and I was logging about 16 events per hour of obstruction. I started using the machine and I really don't have much problem with using it. Eventually, I gained a grand total of 60 lbs.
Before CPAP, I used to wake up with very painful sore throats any time I fell asleep. Also, I have a sensitive 'sound-activated' tape recorder and have many tapes of my snoring at night. (before CPAP)

Fast forward to 2014; I have lost all of the weight and then some more too. I am in the gym every day and am running, biking, and lifting weights like never before. I have tried sleeping without CPAP and have found the following:

Tape recordings indicate absolutely no snoring at all.

Wife reports no snoring.

I have no sore throats when I wake up.

I feel absolutely fine during the day. I am not tired or in need of naps.

So, here is my point: I absolutely hate doing the sleep study. I think my results are pretty indicative that I don't need the machine anymore.

Ok, tell me I'm crazy. Seriously, let me have your thoughts.

Jerry

[49er]

Hello folks, I haven't posted on this forum in quite a while. I want to tell you where I've been and what I think I'm going to do next:

In 2010 I had gained about 20 lbs and my wife had started complaining that I was snoring. (I was 46 years old) After gaining a few more pounds, a sleep
study indicated that I needed CPAP. My blood oxygen was falling as low as 79 % and I was logging about 16 events per hour of obstruction. I started using the machine and I really don't have much problem with using it. Eventually, I gained a grand total of 60 lbs.
Before CPAP, I used to wake up with very painful sore throats any time I fell asleep. Also, I have a sensitive 'sound-activated' tape recorder and have many tapes of my snoring at night. (before CPAP)

Fast forward to 2014; I have lost all of the weight and then some more too. I am in the gym every day and am running, biking, and lifting weights like never before. I have tried sleeping without CPAP and have found the following:

Tape recordings indicate absolutely no snoring at all.

Wife reports no snoring.

I have no sore throats when I wake up.

I feel absolutely fine during the day. I am not tired or in need of naps.

So, here is my point: I absolutely hate doing the sleep study. I think my results are pretty indicative that I don't need the machine anymore.

Ok, tell me I'm crazy. Seriously, let me have your thoughts.

Jerry

Hi Jerry,

Congratulations on the work you did in losing the weight and greatly improving your health.

Perhaps as a compromise, you should do a home study just to make sure you are apnea free? You may or may not know but lack of snoring doesn't indicate that you don't have sleep apnea. Better to be safe than sorry.

49er

[SleepyToo2]

Congratulations on the weight loss and the gym work. Unfortunately, the lack of snoring is not a definitive indicator of lack of apnea. While using a recording oximeter will tell you if your oxygen levels are dropping during the night, not everyone with apnea has them. Finally, in the unfortunately column, the only accurate way of telling if you have resolved the sleep apnea problem for now is to have another sleep study. My understanding of the home tests is they work to tell you how well the machine can control the apnea that you have - they don't record when you are not using the machine. Thus, the only way to tell for sure that you no longer have sleep apnea is to have another in-clinic study. Also, keep in mind that if you regain the weight that you have lost, the apnea will return since it is anatomic in origin and that part will not change.

[mrnetwurm]

A home study ? Well, I'm not sure what that is, but I was wondering if I could find a blood oxygen meter (the finger kind) and see what values it loggs during the night. I'm not sure if such a thing exists for the consumer.

Another idea, which will take longer is to use the features in my ""PR System One REMstar Pro CPAP Machine with AutoIQ."" The machine can detect my pressure requirements and adjust as needed. I have to sleep with it for 3 days in the 'auto-trial' phase to let it detect and select a setting. I'm not sure if it will tell me if I need 'zero' pressure, but it may tell me that I need something much lower than my initial setting of 11.

The sleep doctor that I used was really quite awful and I quit seeing her about a year or more ago. Sleep studies at her office (I had two) were also not fun at all. I had lots of trouble falling asleep. The med tech was in the next room all night and he made lots of noise. He rolled around on an office chair all night and seemed to be constantly opening the 'motion activated' trash can lid which made little motor sounds. I also sleep on my side and roll around a lot, which really doesnt work well with the wires attached to me.

[49er]

Congratulations on the weight loss and the gym work. Unfortunately, the lack of snoring is not a definitive indicator of lack of apnea. While using a recording oximeter will tell you if your oxygen levels are dropping during the night, not everyone with apnea has them. Finally, in the unfortunately column, the only accurate way of telling if you have resolved the sleep apnea problem for now is to have another sleep study. My understanding of the home tests is they work to tell you how well the machine can control the apnea that you have - they don't record when you are not using the machine. Thus, the only way to tell for sure that you no longer have sleep apnea is to have another in-clinic study. Also, keep in mind that if you regain the weight that you have lost, the apnea will return since it is anatomic in origin and that part will not change.

Hi SleepyToo2,

I am perplexed by your post as there are home study tests you can to do test for sleep apnea that have nothing to do with using the machine. The only problem with mine and I would caution Jerry and anyone else who undergoes one on this is that I wasn't instructed to turn off the machine when I was awake. As a result, it mistakenly assumed I had slept for 7 hours when I only slept for two and most likely understated the severity of my apnea. Perhaps that is what you are thinking of?

Then again, maybe the test I had wasn't capable of being turned on and off again. Unfortunately, being a newcomer to the apnea world, I didn't know what questions to ask.

Jerry, I can understand based on your previous experience why you don't want to have another sleep study. Perhaps trying another sleep doctor and center would be a more positive experience?

If you're interested in home sleep studies, I would do a google search.

Regarding doing a pulse oximetry recording, I have found that I do not significantly desaturate even though I definitely have sleep apnea. So that might not be the most useful tool for you to use.

Best of luck.

49er

[ChicagoGranny]

Another idea, which will take longer is to use the features in my ""PR System One REMstar Pro CPAP Machine with AutoIQ."" The machine can detect my pressure requirements and adjust as needed. I have to sleep with it for 3 days in the 'auto-trial' phase to let it detect and select a setting. I'm not sure if it will tell me if I need 'zero' pressure, but it may tell me that I need something much lower than my initial setting of 11.

Given the analysis you have already done, I would go for this. If the results show no events and indicate you need a pressure of 4 cm, you might be OK without CPAP.

What position(s) do you sleep in?

[mrnetwurm]

I sleep mostly on my side and sometimes more on my stomach. I definately have never been able to sleep lying on my back.

[sc0ttt]

No snoring, plus no desats, plus feeling fine in the morning is pretty positive indication that you don't need PAP.

But 20 pounds and a better level of fitness (congrats well done) doesn't sound like that huge of a change to explain the change in your moderate AHI and severe oxygen desat from the study... so I council... do it again just to be safe.

[chunkyfrog]

I second the others. Without solid evidence, your observations are subjective,
--tempered by some dislike of treatment. Therapy probably helped you lose the weight.
If you stop, the weight is likely to return. Bad news from a frog. Bad day all around. Sorry.

[library lady]

I wouldn't advise you to go off cpap at this point without doing another sleep study to be certain that you no longer need it....as one poster suggested, you could perhaps find another sleep doc and center to get this.

I continue to snore even with cpap, according to sleepyhead, but the reason for cpap is not to stop snoring, but to lower the risk of a stroke or heart attack, or even dying in your sleep. Not everyone who needs cpap is overweight, but I commend you on your weight loss and exercising.... Keep it up, it's good for your health!

[ChicagoGranny]

I sleep mostly on my side and sometimes more on my stomach. I definately have never been able to sleep lying on my back.

Sounds like positional sleep apnea. There is not a generally accepted precise definition, but here is one that was used in a study.

Positional sleep apnea was defined as a total apnea-hypopnea index (AHI) > or = 5 with a > 50% reduction in the AHI between the supine and nonsupine postures, and an AHI that normalizes (AHI < 5) in the nonsupine posture.

In your case you are looking for data to show that your AHI normalizes in nonsupine positions.

[ChicagoGranny]

The Crab Cases

A tourist wandered down to the docks late in the afternoon when the fishermen were in with their fresh catch and preparing to ship their catch inland. He noticed that there were many cases of crabs ready to be loaded. The season was right and the catch was good.

The tourist noticed that one fisherman's crab cases were going on board without any lids. He said to the fisherman, "There are no lids on your cases. Your crabs will escape."

The fisherman replied, "Not to worry. These are cpaptalk crabs. As soon as one gets near the top and is about to escape, another crab pulls him back in."

ChicagoGramps

[mrnetwurm]

ChicagoGranny, i think you are trying to tell me that sleeping position affects apnea, but I'm unclear as to which positon is worse or better.

Also, to be clear, I have not lost 20 lbs, I have lost over 50. I started CPAP at 230 lbs and continued to balloon up to 250 lbs. I stayed at that weight for about 2 years with CPAP therapy, and only decided to lose weight earlier this year. I now weigh just over 190.

Yes, everyone is right. I need to do another sleep study. I was just hoping to avoid all that. In my first sleep study, I lied awake for about 5 or 6 hrs and the technition added to my stress by coming in and telling me that if I didnt fall asleep he wouldn't be able to record any data. My sleep doc didnt believe in taking any sleeping pills as she felt it would cloud the data. In that first study, they only got 2 1/2 t 3 hours of data. I did better in the second study for titration.

[Pugsy]

I would think I might go for the home study (and not with the machine at minimum pressure)....home studies typically include pulse oximetery to cover the potential drops in O2.
There are different levels of "thoroughness" with various home studies depending on how many channels (things they record) are used. I wouldn't want one with the only channel being the pulse oximetery. I would want one with a little more thoroughness.

The alternative would be to use the machine at minimum 4 cm pressure all night and see if any apnea events get flagged at all. It isn't a perfect solution because there is therapy value at 4 cm so no events wouldn't guarantee nothing happened...plus using 4 cm all night can be really stifling and difficult to sleep with for some people.

I'm unclear as to which position is worse or better.

Supine sleeping is typically the worse position because it allows the airway to simply fall back on itself...more chance for the airway to be blocked and/or need more pressure to hold it open.

These are cpaptalk crabs. As soon as one gets near the top and is about to escape, another crab pulls him back in."

Good one. And how true it is.

[archangle]

No snoring, plus no desats, plus feeling fine in the morning is pretty positive indication that you don't need PAP.

That's not a safe statement. No drop in O2 doesn't mean no apnea. Some people wake up enough to catch their breath before their O2 drops, but they still suffer from the effects of stress and disturbed sleep like lack of REM sleep. Also, many apneacs don't snore, and say they feel good in the morning.

You could learn to use SleepyHead if you haven't already done so, and try turning your pressure down slowly and see if you start showing any apnea. That's not as good as a sleep test, but might be better than just stopping with no testing. One problem here is that it's possible that you might show no apnea at the mimimum pressure your machine will do, but still have apnea without CPAP at all.

Another risk if you simply quit CPAP is that even if you don't have apnea right now, you might develop it in the future as you age, gain weight, or otherwise change. If you do stop CPAP, keep a keen eye out in the future for the signs of returning apnea.

Some people also think that for some people, CPAP does something where you will not have apnea for a while after you stop, but will redevelop it later. I doubt this really happens, but a number of people have reported that doctors want them to stop CPAP for several days before taking a sleep test.

Note I'm not saying not to stop. I'm just pointing out that you can't be sure you don't have it any more without a real sleep test.