Can't sleep with cpap. Is pressure too high? Here's story.

[skinnysleepapnea]

Without cpap, I wake up 3-4 times a night.
With cpap I seem to go into a sort of revery or light sleep, at best. This is two months now. Often I don't sleep or hardly sleep and find myself waking up 4-5 times a night (fully waking up). One possibility is that the pressure might be set too high, despite the titration. After the titration in which the technician told me that my breathing was best around 11, the doctor thought that maybe it should be set much lower than that, but I argued that (from the basis of knowing nothing but what the tech told me) since I woke up so often, that higher pressure was more likely to get me through these awakenings which I was having without the cpap. Since I was diagnosised with sleep apnea, I naturally assumed the cpap machine would cure the awakenings which I assumed were a result of the sleep apnea. The doctor discussed a lower pressure, somewhere between 4 and 8. I wanted to go with the 11 since I felt only high pressure would keep me asleep. We settled on 10. In any case, I'm wondering now whether my difficulty falling asleep with the cpap and the very light sleep I have with it is not caused by too high a pressure.
Should I call the doctor up and have her prescribe lower pressure?

[WAFlowers]

Should I call the doctor up and have her prescribe lower pressure?

No, because you don't know that that is the problem. I agree you should call your doctor and discuss what is happening; tell her essentially what you said above about your sleep or lack of it. Pressure might be the problem, but it could be something else altogether. Work with your doc to figure this out.

[wading thru the muck!]

Sorry to go off topic a little on this post, but why are we all paying for these high priced sleep studies if (as in skinny's case) the Doc just seems to be pulling a pressure setting out of thin air. The supposed purpose of a lab titration is to determine exactly what pressure you need to prevent most of your apnea/hypopnias....this determination comes at a high price. If the Doc is just going to guess or going to arbitrarily lower a patients pressure then I ask again, why are we paying for high priced sleep studies???

Skinny, If it is any reasurance, 11cm is not that high. I would look to some other reason for your poor sleep.

[IllinoisRRT]

I would call your doctor and talk to your RT about it. I know everyone here would quickly say, "switch to an auto-PAP", which would probably help, but not all doctors are on board with that (another thread entirely!).

I will share a patient experience that I had last year. I had a patient who, coincedentally, was prescribed 11 to start. She had a horrible time tolerating it, said she would never ever be able to tolerate that much (it's probably below average, but for a newbie I can see how it would be high), etc. Her sleep MD (I don't recall her SS offhand) wrote me an order to go to a pressure of 8 and titrate up to her comfort.

I turned her pressure down to 8. A few weeks later, she was ready to go up a little higher. A few weeks after that, again. I told her I would not go above 11 since that was the initial order. She is now on 11 and actually wanting it to be turned up again.

I don't really agree with doctors (esp. internal med or other docs not specializing in sleep) arbitrarily picking numbers to set your pressure at. However, your sleep study might offer more information, especially if you have a good RT (such as myself haha). I've seen sleep studies where the final order is for, say, 10, but the patient never even got that high during their titration. Which doesn't make sense to me, but whatever. I'm saying that by looking closely at the titration results, your MD/RT might be able to find a window of pressure that would work better for you, even if it might be changed again down the road. That kind of goes along with your original post, where you said the tech told you 11 but the MD said a lower pressure would work. I think that sometimes the higher pressure will work, maybe 100%, but to ensure compliance and to give them room to increase later if necessary, SS docs might order a lower pressure that will work at, say, 99%. Does that make sense? I hope that helps some.

[Sleepless on LI]

Skinny,

First of all, I don't think this is caused by a 10 cms. pressure when you were titrated at 11. And I can understand waking up multiple times during the night when you have untreated apnea. No need to say more about that. But to now be sleeping so lightly AND still be waking up so many times a night, I don't see it as being related to being on CPAP. A lot of times we trade our sleep problems before and after because one is due to events that disturb our sleep and then after being put on treatment, the pressure, the leaks, the hoses and all the treatment-related inconveniences wake us up until we can get used to it. But I would think that on therapy, you would sleep better even if you still wake up, rather than sleep lightly all the time and still wake up. I know I'm not saying this clearly, but I know what I'm trying to get across.

I don't see why sleeping lightly now would be a result of being on therapy. Yes, wakings still due to a multitude of reasons. I am just recently starting to actually sleep much better after almost five months of being on therapy. But I can't see sleeping lightly as a result of being on therapy. I think that would mean you're probably not getting into the deep sleep stages you need to get into that the therapy is supposed to help you with.

And this playing around with the number by your doctor after you've had a titration study is really unexplainable. Titration studies take place for a reason. If you don't want to use the number that you were titrated at, or you feel it disrupts your ability to sleep, then the only solution that I could see WOULD be (sorry, Christine) an auto setting where that titrated pressure gets incorporated into the setting, rather than ruled out by setting the machine 3 cms. or so below that rate.

I feel so bad for you. I know what it feels like to go through everything and still wake up multiple times a night. If it makes you feel any better, it got better finally for me (as far as waking up every night a few times). I have been keeping my machine on auto every night, even though my AHI's are really low on straight 10 cms. CPAP, and the machine rarely now goes over 6. Makes sleeping a lot easier.

So, yes, auto seems to be an answer in your situation. But definitely talk to your doctor and find out what is going on, if there may be some other underlying cause why you are not getting into a deep sleep ever even on therapy. When I wake up a few times during the night, the rest of the time is spent in really good sleep and I feel so much better for it. You need that deep sleep in order to restore your energy. So I can only imagine between the light sleeping and the wakings how tired you must be. Get some advice from a professional and think about an auto.

[wading thru the muck!]

Christine,

You accurately predicted that this post would be forthcoming.

I have to say that what you suggest, though it may work, entails a LOT of high priced medical attention when an AutoPAP (I said it) would do this same thing every night. For those who don't know, an AutoPAP raises the pressure to Skinny's 11cm only for the short intermittent periods of the night when it is needed. Of course if you are having constant apneas this would make no difference, but as it is for most of us, the actual time we spend in apnea/hypopneas is very short relative to the 8 +/- hours we sleep. As far as Docs not being onboard regarding APAP use, would it not be better to be on an auto set at 8cm min and give the auto a shot at catching the apneas rather than dropping the fixed pressure to 8cm and having zero possibility of it resolving anything requiring more than the fixed 8cm?

Just my take on this perennial issue.

Christine, once again thanks for adding your proffesional perspective. It is of high value to me to read your commentary.

[IllinoisRRT]

I don't disagree with you, and I honestly don't know why doctors (the ones I deal with anyway) don't do more APAP. I just offered my insight in case the original poster was perhaps already stuck with a straight CPAP and had the support available to make a gradual change. And as far as "high priced medical attention", the scenario I described cost the patient nothing, and cost my company nothing but the gas it cost me to get to my patient's house! But in the end, I do agree that APAP would be better in this case; but in the case of a stubborn doctor or DME, there are alternatives.

[george45]

I think the sad truth is that cpap doesn't work for most people. There is an advertized compliance rate of 50%, meaning that the patient uses the machine for at least 4 hours per night on at least 5 out of 7 nights. If the compliance rate were set at 7 or 8 hours per night 7 out of 7 nights of the week it would be much lower.

We all get our hopes up when we read the success stories on this board but these are not the norm. I have been using an autocpap for 2 months. I tried an experiment for 10 days when I did not use it or used a ball sewn into my t-shirt to keep me from sleeping on my back (the worst position for apneas) After keeping a careful log for 2 months I find that I feel no better on cpap and slightly better with the ball in t-shirt trick. One of my worst days was after I managed to stay on the cpap for a full 8 hours the night before. I think my problem is like yours, the cpap wakens me more than the apneas. I'm not ready to give up yet. I keep waiting to awaken and feel more rested than I have in many years like the lucky few on this board have reported.

Don't give up yet. Try different masks (you didn't say how many you have tried) since they are at the root of most problems. IF you can find a comfortable mask, a pressure of 10 or 11 won't be a problem.

[rested gal]

That kind of goes along with your original post, where you said the tech told you 11 but the MD said a lower pressure would work. I think that sometimes the higher pressure will work, maybe 100%, but to ensure compliance and to give them room to increase later if necessary, SS docs might order a lower pressure that will work at, say, 99%. Does that make sense? I hope that helps some.

Makes perfect sense, Christine. And your thoughtful posts help more than just some.

While an autopap makes sense to "us", you are absolutely right, Christine, that many doctors have a "nope, I'm not going to prescribe one of those things" attitude toward autopaps. And in that case, exactly as you said, if the person is absolutely stuck with the one machine they have, the next best alternative is to lower the pressure to a tolerable level and spend the next week or so edging up gradually to the prescribed pressure.

For many, the problem is not so much the pressure coming in at them (except when it causes mask leaks) but more a matter of trying to exhale against pressure. It's probably a fairly easy matter to get the doctor/dme to switch the prescription to a straight cpap with C-Flex. That's worth a try in case that will let the person use their titrated pressure after all and be able to breathe out more comfortably.


The method you, the doctor, and your patient decided on...easing up toward the target pressure a little at a time...is a good way to handle it if a change of machine is out of the question. Very good thinking.

george45, your comment is dead-on correct, imho: "If the compliance rate were set at 7 or 8 hours per night 7 out of 7 nights of the week it [compliance] would be much lower." A sad truth, indeed, and a very sad state of affairs in the field of sleep medicine as a whole.

The diagnosing is getting better and better, but the comfort issues that make or break treatment are not being addressed anywhere like they should be - not by the doctors, not by the DME's, not by the sleep clinics, not by the mask manufacturers. Lucking onto an RT like Christine (Illinois RRT) is still like finding a rare treasure out there.

[THier]

Skinny,

I am VERY new to cpap,, 10 days,, I had a standard cpap, set to 12. I had a horrible time,,, read back my "How long to keep trying" thread. I was waking up numerous times a night feeling like I couldn't exhale. I also was removing the mask in my sleep. I recently,, (friday) had a REMstar Pro with C-flex delivered. Friday and saturday night have been completely different for me, I HAVE slept better, kept the mask on all night, and I feel much better about the whole cpap treatment. It is still not perfect, ( I awoke twice last night with leakage) but I am much happier.

Folks here are the best,, it has helped me a ton haveing all these folks here to get advise.

Long story short, C-flex has been the answer for me. I don't know what kind of machine you have,, but if you are not useing a C-flex or bipap you may be having the same issues I had.

Tom

[skinnysleepapnea]

I wanted to thank you all... I'm rereading this log and will call Dr. in morning. apap seems best idea to me but I suspect it won't float right now... let's see what she says... but now I have some ideas and background. Thanks again.