y08hci0299 wrote:Hi Robysue, let's just put it this way, it's hard to put on the mask and use the machine every night when you're severely depressed.
You have to make a distinction between feeling lousy because of the depression and simply saying that CPAP therapy is not working for you and will never work for you.
I understand that depression makes everything much more difficult. And depression makes every small failure seem like a huge, personal failing. But you have to understand that it is possible to have OSA and depression as
separate medical problems. Unfortunately depression and untreated OSA can work together in a nasty way: The untreated (or undertreated) OSA and its resulting sleep deprivation can worsen the depression and the depression can worsen your sleep in ways that make it harder to force yourself to do the things you need to do to adjust to CPAP therapy.
One thing that you've got to do is admit that treating the OSA is not going to be easy for you: There is nothing natural about sleeping with a six foot hose attached to your nose with air being blown down your throat. But
if you are willing to put some time and patience into making CPAP work, then
eventually the idea of sleeping with a CPAP won't seem so impossible. Once you are sleeping with the CPAP, then (and only then) will the untreated OSA no longer be able to aggravate your depression.
I even find it difficult to shower or to brush my teeth, it takes a lot out of me to muster up the energy to 'prepare' a night on cpap. especially when every attempt has been met with failure.
Right now you are not using the CPAP often enough or long enough for it to properly treat your OSA. In other words, if you did just throw the DreamStation into the closet and forget about it, your life would NOT improve at all in terms of the
depression symptoms, including your sleep problems. So I want to talk about the
depression for right now.
It's the
depression that is making it difficult to shower, brush your teeth, and in general function on a day-to-day basis. How long have you been treated for
depression? What are the psychiatrist and the psychotherapist doing to treat your depression? How often do you see them? And, most important, do you think any of the things they are telling you to do for the
depression are making a difference? In an earlier post you mentioned that you had tried a number of different medications, but could not tolerate them or simply did not want to take them for fear of addiction. Have you and your mental health team talked about exactly what the medications were supposed to do, how to take them, and whether you are at high risk of addiction if you take something like xanax that actually did something positive for you?
And has your depression worsened in the last few weeks? If so, have you reported that fact to your psychiatrist and psychotherapist? If not, then why not?
And to answer your question, when I used the resmed airsense 10 auto, it was a 1 month trial from a local shop, I had to return it eventually, I did not realise that there would be such big differences between the machines, and the dreamstation bipap auto is actually a lot cheaper than resmed machines where I am from, so I conveniently thought, hey it's cheaper, philips is a good brand, lots of people use the machine, why not. It's only after months of tinkering that I realised that the differences were so stark, and that the little things actually made a big difference.
Truth be told, most people can't feel the difference between the two algorithms. But you're not most people, you are you. And you happen to be in the small minority of people who can feel a difference and have that difference matter.
For what it's worth: I started out on a Resmed S9 AutoSet and the dang "Easy Breath" algorithm that you prefer drove me nuts and the PR BiPAP with Rise Time = 3 works quite well for me. Different people who are sensitive enough to feel a difference can have very different reactions to the algorithms.
If the PR Machine can be exchanged for another Resmed, that's one option you should consider. Or depending on where you live, you might be able to pick up a gently used Resmed S9 AutoSet for not much money.
I'm really grateful for all your suggestions and your questions and I am pouring over them and I'll answer them one by one. My sleep doctors(yes plural) have been pretty useless, most of them have no idea how to operate a cpap, and I'm not going to pay $100 consultation to have them tell me to be patient with cpap and to just keep going.
I've had a lot of experience dealing with doctors and techs that don't listen. But there are ways of getting the doctor to focus on YOUR issues rather than just providing you with stock answers.
That said, at this point when talking to a sleep doc or a tech (or even people on a forum like this), the usage numbers are the critical problem that stands out from the data. And the stock answer to someone who uses the machine for an average of 1-2 hours every other night and then says, "CPAP is not making me sleep any better" will be, "You need to use the machine more. As in every night, all night long."
See the thing is, a sleep doc doesn't have any real idea as to
why you are not using the machine more. S/he only knows that in the last 116 days of owning a CPAP, you've used it on only 35 days, and on most of those days, you've used it for less than 2 hours and on many of those days, you've used it for less than 1 hour. Which means you haven't really gotten to the point where you are sleeping with the machine. It looks to me like this: On many of the nights when you try to use the CPAP, you put the mask on when you first go to bed at night (or when you can't sleep), but if you are still awake after 15-20 minutes, you take it off and then presumably go to sleep without the mask on. Unless you can articulate
why you feel compelled to take the mask off on those nights, there's not much a sleep doc or a tech or even a person like me can say other than "Keep trying. Put the mask on every night and try harder to not take it off."
I have worked with sleep techs, the ones I've worked with so far have been woefully incompetent, they don't even know what sleepyhead is, they don't even know what UARS is, and they just give simplistic advice like mask not working out? Try a new mask. Pressure not comfortable? Try a new pressure.
Keep in mind: Sleepyhead is a beta-version piece of software written by a CPAP patient. It is NOT officially sanctioned by any CPAP manufacturer, nor has it been independently verified to "work" by some organization like the FDA. That's why sleep docs and sleep techs don't know about SleepyHead and why many of them don't trust it even if you tell them about it. That said, I'm a big fan of SleepyHead and I've compared my data in SleepyHead to what it looks like in Encore (the official PR software) and ResScan (the official Resmed software.) But I also know that a professional who works in sleep medicine is going to have lots of valid reasons for not knowing about SleepyHead or not trusting it.
UARS is a whole different kettle of fish. The problem with UARS is that it is not yet a diagnosis that is routinely accepted by all sleep professionals. Moreover here in the US many insurance companies will not pay for a CPAP machine for a patient with a UARS diagnosis. I also believe that neither Medicaid nor Medicare will cover CPAP for UARS. So unless the insurance situation changes, US UARS patients often have real problems obtaining equipment if they need to pay for it with insurance dollars.
My psychiatrist basically just wants to keep throwing different pills at the problem, sort of like throw shit at the wall and hope something sticks. My psychologist is the only one who has been really helping put through this process, but she's a psychologist, not a sleep specialist, she provides a listening ear, but she can;t exactly help me along because she knows nothing about sleep medicine/cpap usage etc.
How long have you been frustrated with your psychiatrist? And if you are not happy with him/her, then why not try to find a different one?
The psychologist may be able to help you more than you realize---if s/he is willing (and capable) of doing cognitive behavior therapy. Because the sleep science end of things is not actually where the problem is when it comes to
learning how to sleep with a six foot hose attached to your nose. It's a behavioral thing. There are things that you can do to make it
easier to learn how to sleep with the CPAP and there are things that you can do that make it
harder to learn how to sleep with the CPAP. And right now, you are doing a lot of things that make it
harder to learn how to sleep with the CPAP.
so i really the support i'm getting on these forums is the only support that I'm getting. Not that I haven't tried reaching out, just that the asisstance I have received from these professionals is inadequate. I mean you gave me more information and insight into cpap usage in your 2 replies to me on this forum compared to all the sleep techs and sleep doctors I have seen in the last year combined.
It's good to know that you're reaching out to the forum to get help rather than to get permission to just give up. As long as you are willing to work at it, folks on this forum will be willing to help you.
I'm feeling physically lousy because of my poor sleep, but i think the mental/emotional aspect of feeling lousy really comes the frustration not being able to get used to cpap.
I have had a few sources of discomfort so far
1)The feeling of the chinstrap against my face, I've woken up once because the chin strap was too tight and it caused me pain, sometimes it's just the feeling of fabric against my skin.
2)The feeling of the mask, the pillows on the inside of the nose which sometimes causes irritation, the feeling of mask resting against the top of my lip which causes heat and moisture buildup,
3)The pressure. The bipap is uncomfortable for me, but if I use the cpap function, too high a pressure eliminates my events, but causes me anxiety and requires more effort, lower pressures are a lot more confortable but I end up having more vents.
GOOD. You've give us some
concrete issues to work with. The more you can articulate what is wrong, the easier it is to suggest things that might actually work for you.
Let's look at them one at a time:
)The feeling of the chinstrap against my face, I've woken up once because the chin strap was too tight and it caused me pain, sometimes it's just the feeling of fabric against my skin.
My advice is:
Ditch the chin strap. At least for now. Yes, you might mouth breath. But until you are using the machine more, large leaks from mouth breathing are just not very important. If it turns out that you have enough large leaks to worry about
after you are using the machine every night, all night long, then you'll have plenty of time to revisit whether you need the chin strap.
2)The feeling of the mask, the pillows on the inside of the nose which sometimes causes irritation, the feeling of mask resting against the top of my lip which causes heat and moisture buildup
Nose irritation from nasal pillows is a very common problem. Things to try:
- Make sure you don't insert the pillow tips too far into your nostrils. Only the tippy-tips of the cones go inside the nose, but you would be surprised at how many sleep techs seem to think you need to jam the whole thing into your nose.
- Lansinoh nipple (breast) cream. Yep, the stuff that is sold to nursing mothers to soothe dry, cracked sore and tender nipples is used by CPAPers to soothe sore and tender nostrils. Look for it in the baby aisle of your local grocery store, drug store, or big box store like Target or Walmart. It's kind of expensive, but you only need a tiny amount so a tub will last you for a very, very, very long time.
- Loosen the head straps. If the head straps are too tight, that can pull the pillows into your nostrils. Now, as I recall, you are using the P10, which does not have headgear that looks adjustable. Turns out that the wider you spread those two strap pieces, the "looser" the mask fits at the nose. So experiment with pulling those two pieces of the strap as far apart as you can get them. Also helps if you don't regularly wash the backstrap in hot water since that will make it shrink back to its original size.
- Try different pillow sizes. Try going UP a pillow size. It sounds contradictory, but the larger pillow will be more resistant to slipping too far into the nostrils.
- Try a Padacheek pillow cozy. These are high quality fabric wraps designed to go around the pillow without blocking the vents. They help keep the plastic/silicone part of the mask from touching your upper lip. They also provide a bit of insulation which can help with the moisture build up.
- Try alternate temperature and humidity settings. Since you are complaining of heat build up, turn the heated hose down or off if you are using a heated hose. Try turning the humidifier down as well. Not everyone needs to have the humidity and heat set as high as possible. Some people do best with very little (or no) additional humidification. Others need a lot.
3)The pressure. The bipap is uncomfortable for me, but if I use the cpap function, too high a pressure eliminates my events, but causes me anxiety and requires more effort, lower pressures are a lot more confortable but I end up having more vents.
I think you need to work on baby steps here. For the time being you need to tolerate more events being scored as long as the lower pressure allows you to use the machine more. Work up to the necessary pressure with some time.
To make this clearer, we need to start at the beginning: Did you have titration study done? Or were you just given an Resmed AirSense 10 AutoSet and told it would find the right pressure?
The summary data you posted shows that you've pretty much been running at CPAP pressures of 10cm and above or BiPAP pressures with the IPAP set at 13 cm or above. Why?
You also say you are not using the ramp, but if pressure is keeping you from getting to sleep, then the new smart ramp is a feature that could very well be important for getting you to the point where you can put the mask on without thinking about it. (And yes, that's the eventual goal in adapting to CPAP therapy---to be able to put the mask on and go to sleep without giving the mask and machine any more thought than you do to your bed pillows, blanket, pjs, etc.)
So some questions:
1) Do you know if you are comfortable breathing against 8 cm of pressure? What about 6 cm? What about 4 cm? In other words, at what pressure setting does your anxiety and the "extra effort" kick in making it hard to tolerate the machine?
2) When the pressure is bothering you, is the problem that you feel like you cannot fully exhale? Or is it something else?
3) Do you ever feel like you are getting a stomach ache from the pressure?
It's really hit or miss, the sensations are the same every night, but some nights I'm ok with it,
That summary data says you are NEVER "ok" with it. You've only used the thing for more than 3 hours ONCE in the last 116 days. You've only used it more than 2 hours ten times in the last 116 days.
Be honest: How many times have you actually fallen asleep with the mask on your nose? As in really fallen asleep, not just sort of dozed?
some nights I just get so agitated I pull everything off.
This is believable. However, on the vast majority of nights, you haven't even tried putting the hose on. To be fair, however, you HAVE tried to use the machine 5 of the last 7 nights. And that is a major step forward.
So lets get back to those "sensations" you mentioned earlier. What are the
three most irritating sensations that seem to pop up every time you put the mask on your nose? Try to be specific. You need to focus on those three sensations first. If you can eliminate or minimize them, it will be easier for you to keep going.
Yes, and I have tried using it while awake, the discomfort becomes too much to bear after awhile.
How long can you keep the mask on before the discomfort becomes to much to bear? 10 minutes? 30 minutes? an hour? Once you know that, you have a major piece of the puzzle figured out. If the discomfort becomes unbearable in 15 minutes, then you know that you will have to train yourself to fall soundly asleep within 15 minutes of putting the mask on at night. That may sound impossible, but it can be done.
Again, let me talk about my own adjustment problems for a bit: Prior to starting CPAP I had a very long latency to sleep every night. As in I would lie in bed next to my husband for an hour or so before drifting off to sleep. This never bothered me because I did a lot of very pleasant daydreaming while waiting for sleep to come. But that long latency to sleep just didn't work with CPAP: I started to become miserable (mainly due to aerophagia) after 10-15 minutes of turning the machine on, and once the stomach ache started all kinds of other littler "irritants" from the CPAP conspired with the aerophagia to make me become more and more and more awake the longer I laid there in bed trying to get to sleep. This went on for months. Until I started doing CBT for insomina (CBT-I), where a huge part of my CBT-I focused on getting my latency to sleep down to the 10-15 minute period I could manage to use the CPAP without getting too horribly uncomfortable.
Even today, after almost 7 years of PAPing, I still need to fall asleep pretty quickly after putting my mask on or I run a high risk of having a miserable night of tossing and turning with aerophagia raising its ugly, uncomfortable stomachache. But because of the CBT-I I did back in 2011, I've been able to keep my latency to sleep short enough to allow me to fall asleep comfortably on CPAP, and once I'm asleep, it doesn't bother me any more. I do still have middle of the night wakes, but with using the ramp and the CBT-I I can also get back to sleep before I become uncomfortable from the CPAP.
I've also tried sleeping pills, all they did was make me sleepier, but they did nothing to actually help me sleep, and I would wake up even more tired in the morning.
Sleeping pills have one purpose and only one purpose: They are suppose to make it easier to
fall asleep at the beginning of the night.
Sleeping pills will not improve the quality of your sleep, and with untreated OSA they may very well make the quality of the sleep worse since some of them can increase the tendency of the airway to collapse during sleep.
And sleeping pills will not keep you asleep: If you have frequent middle of the night wakes where you have significant problems getting back to sleep, taking a sleeping pill at the beginning of the night usually won't fix the problem of waking up, although it may make it easier to get back to sleep after you wake up.
Also, feeling more tired in the morning is a pretty common side effect of sleeping pills, particularly ones with a long half-life. The usual way of handling this problem is to try a smaller dose of the sleeping medication AND make sure that you allow enough time in bed for the pill to fully wear off.
Finally, I have a few questions about your usual sleep habits. And by "usual sleep habits" I mean on days when you aren't trying to use the CPAP as well as thinking back to what your sleep looked like
before you started trying to use the CPAP.
1) How long do you think it takes you to fall asleep after you go to bed on a typical night?
2) When is bedtime? How irregular is your bedtime?
3) When do you typically get up in the morning? Does it strongly depend on when you went to bed? Do you sleep much later on weekends than weekdays?
4) How many times do you typically wake up during the night? How long does it take you to get back to sleep after you wake up in the middle of the night?
5) How much sleep do you think you need to feel rested in the morning? How much actual sleep (NOT time in bed) do you think you get in a typical night?