Need suggestions to adjust to cpap treatment

Nearly a month ago, I started using the machine. Unfortunately, it was a horrible experience as my sleep became severely fragmented - Waking up every hour and going back to sleep.

After dealing with this for a week, my use has been sporadic.

In trying to problem solve the issue, I realized that the insomnia issue that I really never resolved after getting off of psych meds (they caused horrible side effects) was probably contributing to this although I wasn't sure my settings were right.

Unfortunately, I got no help from my sleep doctor. I really don't want to post about the details because it is too painful.

The good news is that the book by Barry Krakow, Sound Mind, Sound Sleep, has helped tremendously. As an aside, if you are suffering from insomnia and are cynical about the typical insomnia boiler plate suggestions, this is your book to get. I wish to god I had bought it sooner.

Last night, I slept the most I have slept in days. So much for my doctor's prediction that I wouldn't succeed without meds.

Unfortunately, I started off using the machine and after I woke up approximately after an hour, I took off the mask and went back to sleep without it. I think because my experience has been so bad, the anxiety is feeding on itself.

Also, as someone who is quite hypersensitive to stimuli, I notice when I wake up that I find the noise of the machine and the mask sensation quite irritating.

One possible thought - Like some hypersensitive people have to do with meds, maybe start the machine back down at a very low setting on the theory that I need to adjust to the pressures. Of course, it won't help the apneas but the idea is to slowly work up to what my ideal pressure should be with I think is around 11 judging by the Devilbis 30 day report. I think a straight cpap setting might work the best.

I would greatly appreciate additional suggestions. As an FYI, I do understand I need to use this machine and the health risks involved in not doing so. But that doesn't help with my anxiety in adjusting to it.

I will check the Krakow book to see if there are suggestions later in the book as I haven't gotten very far.

Thank you so much in advance for your help.

49er

Alot of people when they first start sleep for a wee while then wake and some remove the mask without even knowing. I myself couldnt relax as I was always listning to the machine and just could let myself fall asleep. The way to solve this is very easy. what you need is a mp3/IPOD and download what soaths you rain, lapping waves tropical sounds any kind of ambiet music that relax's you now when you stick on your mask stick in your ear phones (Plugs) I still do it after 2 years as I love listning to rain storms and a bit of wind. There is loads of ambient music files on line to choose from. You will be snoring or not in no time at all. If its realism you want download whale song close your eyes and with your mask on dream of scuba diving with them, it makes cpap liveable, hope this help

Thanks Gaz, I will try your suggestions.

I also feel I may have incorrect settings that sadly were not addressed at the appointment that may be contributing to the problem.

Central apneas keep appearing which may or may not be an issue. My latest computer printout of the hour I was on the machine last night confirms that.

49er

49er wrote:I will check the Krakow book to see if there are suggestions (concerning getting used to CPAP) later in the book as I haven't gotten very far.

The whole last section of Sound Sleep, Sound Mind is about OSA, its connection to insomnia (in some people), and CPAP. So I think you may find some useful things in there.

Last night, I slept the most I have slept in days. So much for my doctor's prediction that I wouldn't succeed without meds.

Unfortunately, I started off using the machine and after I woke up approximately after an hour, I took off the mask and went back to sleep without it. I think because my experience has been so bad, the anxiety is feeding on itself.

First congrats on making some real progress on the insomnia. Just keep in mind that there's going to be a lot of two steps forward, one step backwards in terms of progress. So don't get discouraged when you hit a rough spot.

As for the anxiety feeding on itself causing problems with wearing the mask all night. Yes, this can indeed be a major issue for some people. One thing you could try to do is to desensitize yourself to the mask. Far, far away from bedtime move the machine out to the living room or family room---somewhere where you've got a nice chair to sit in. And wear the mask while reading or watching tv. At the start, just try to get a few minutes in---as soon as the mask makes you anxious, go ahead and take it off. If you settle down in a few minutes, then try again. And then move the machine back to the bedroom so you'll have it available and ready for use at bedtime. And keep doing this process for a few days to a few weeks until you notice that anxiety is no longer such a problem at bedtime.

When I was still a newbie, I also found that the very act of putting everything together and scrubbing my face right near bedtime was contributing big time to my bedtime dreads. What helped me deal with this issue was to assemble the machine and fill its humidifier up well before bedtime---as in around supper time. I also got into the habit of washing my face several hours before going to bed too since that tends to wake me up rather than relax me. So you might want to get into the habit of trying to get all the CPAP stuff out of the way early in the evening so that you can recapture as much of that sense of "I can go to bed whenever" feeling that you may be missing. And having some time between setting the equipment up and actually using it lets any anxiety that starts during the set up have time to dissipate before bedtime.

Also, as someone who is quite hypersensitive to stimuli, I notice when I wake up that I find the noise of the machine and the mask sensation quite irritating.

One possible thought - Like some hypersensitive people have to do with meds, maybe start the machine back down at a very low setting on the theory that I need to adjust to the pressures. Of course, it won't help the apneas but the idea is to slowly work up to what my ideal pressure should be with I think is around 11 judging by the Devilbis 30 day report. I think a straight cpap setting might work the best.

As another highly sensitive person, I understand exactly what you mean here. For me the issue wasn't so much machine noise or even the mask on my face. It was a constant awareness of my own breathing (which is still around, but less annoying) and a constant sensation of the air pressure tickling the back of my throat (which fortunately has now abated).

You may want to look into getting The Highly Sensitive Person by Elaine Aron. It may help you cope better to understand why your body works the way it does. And to know that there are others like you who are hypersensitive to stimuli.

As for your idea of starting off with a lower pressure (even though you know it won't be therapeutic) and working your way up to the needed 11cm: In principle this may be a decent enough idea---provided you start at a pressure you can tolerate. What I mean by that is this: Many many people find using a CPAP set to 4 or 5 cm causes more anxiety than using a CPAP at 6 or 7 cm of pressure. The reason seems to be as simple as CPAPs set at very low pressures can cause some folks to feel as though there is not enough air coming through the mask to breath comfortably. And, of course, when someone starts to feel they don't have enough air to breathe coming through mask, they start to feel anxious and sometimes start to feel as though the machine is smothering them instead of helping them.

So analyze your current reaction to breathing with the machine very carefully to figure out what it is about the pressure that is causing problems with anxiety. Newbies with anxiety problems often complain of two very distinct problems when it comes to breathing with the machine: (1)Not being able to exhale comfortably enough, and (2) not being able to inhale comfortably enough. Ironically, both problems are often described simply as I FEEL LIKE I CAN'T BREATHE WITH THE MASK ON!!!.

• If the problem is "I can't exhale enough to be comfortable" or "I feel bloated with air in my stomach" or "I feel as though the machine is forcing TOO MUCH AIR down into my throat and lungs", then starting low and working up to the 11cm you need may indeed be a plausible plan to get there.
  
  But if the problem is "I can't seem to inhale comfortably" or "I feel claustrophobic" or "I'm worried about breathing too much CO2" or "I can't seem to get enough air in through the mask" or "I feel suffocated", then starting out at a very low pressure of 4 or 5cm will likely make things worse instead of better. Indeed lowering the pressure much below the level that you've been using it at may make things worse. So in this case you need to use some caution and think about what you can do to alleviate the fear of not getting sufficient air through the mask.

So---if your anxiety issues are being triggered by feeling like the machine is stuffing too much air down your gut, then yes, start with a lower pressure and work your way up. I'd suggest a timeline so that you do manage to force yourself to get up to therapeutic pressure in a reasonable amount of time. Since you're aiming for 11cm, see if you are more comfortable breathing at 7cm. If so, then leave the machine at 7cm for 3-7 days and then bump the pressure up to 8cm. If that's uncomfortable and your machine allows you to set the pressure at 7.5, then do that. After each pressure increase, leave the pressure alone for 3--7 days---UNLESS you feel like you're being SMOTHERED because you can't inhale enough air. In that case, bump the pressure up again immediately. At the end of 3--7 days, bump the pressure up by another 0.5 to 1cm. In this way you should be able to get yourself up to the needed 11cm in about a month or so at most.

I would greatly appreciate additional suggestions. As an FYI, I do understand I need to use this machine and the health risks involved in not doing so. But that doesn't help with my anxiety in adjusting to it.

First try some self help measures to try to get over the anxiety issues: Wear the mask during the daytime; get everything ready well before bedtime; if it's appropriate, try to ease into therapy by starting lower than you need and adjusting the pressure up on a regular basis; and work on keeping the mask on all night. But if the anxiety becomes really overwhelming, you may want to look into some short-term counseling. I'd suggest finding a counselor who is experienced with cognitive behavior therapy and how it can be used to reduce short term anxiety.

As for working on keeping the mask on all night? The suggestion I'd make is to NOT allow yourself to fall asleep without the mask on---ever. If you've reached the point where you're tempted to tear it off and just go to sleep without it, then it's time to take the mask off, get out of bed, go into a different room and settle yourself back down. Go back to bed only after you are both sleepy enough and calm enough to mask back up when you lie back down in bed.

Hi Robysue,

You're my best friend also for such a helpful reply.

""The whole last section of Sound Sleep, Sound Mind is about OSA, its connection to insomnia (in some people), and CPAP. So I think you may find some useful things in there.""

Thanks, I will take a look.

""First congrats on making some real progress on the insomnia. Just keep in mind that there's going to be a lot of two steps forward, one step backwards in terms of progress. So don't get discouraged when you hit a rough spot.""

That is a great reminder. One mistake I have made in the past is when I had a good night, I thought I was on my way only to fall flat on my face the next night. So I am trying to take it one step at a time.

I now feel that since I have some real techniques to work with, that I will avoid getting discouraged if I hit a rough spot.

""As for the anxiety feeding on itself causing problems with wearing the mask all night. Yes, this can indeed be a major issue for some people. One thing you could try to do is to desensitize yourself to the mask. Far, far away from bedtime move the machine out to the living room or family room---somewhere where you've got a nice chair to sit in. And wear the mask while reading or watching tv. At the start, just try to get a few minutes in---as soon as the mask makes you anxious, go ahead and take it off. If you settle down in a few minutes, then try again. And then move the machine back to the bedroom so you'll have it available and ready for use at bedtime. And keep doing this process for a few days to a few weeks until you notice that anxiety is no longer such a problem at bedtime.""

Regarding the Quatro, unfortunately, I have glasses so that rules out reading. I fear if I watch TV, I will fall asleep without warning which messed up my sleep cycle. Perhaps I can try listening to the radio.

I am not really anxious about putting it on before bedtime. But I think there is anxiety that I am only going to stay asleep for an hour before waking up because that is what has happened in the past.

Perhaps what I need to do is practice more of the Krakow techniques in the book where he mentions you have no control over the sleeping process. In other words, I have to remind myself that what happens will happen.

""When I was still a newbie, I also found that the very act of putting everything together and scrubbing my face right near bedtime was contributing big time to my bedtime dreads. What helped me deal with this issue was to assemble the machine and fill its humidifier up well before bedtime---as in around supper time. I also got into the habit of washing my face several hours before going to bed too since that tends to wake me up rather than relax me. So you might want to get into the habit of trying to get all the CPAP stuff out of the way early in the evening so that you can recapture as much of that sense of "I can go to bed whenever" feeling that you may be missing. And having some time between setting the equipment up and actually using it lets any anxiety that starts during the set up have time to dissipate before bedtime.""

Thanks, I have definitely been doing that. I fill the humidifier and do my other pre bed time routines about two hours before bedtime.

""As another highly sensitive person, I understand exactly what you mean here. For me the issue wasn't so much machine noise or even the mask on my face. It was a constant awareness of my own breathing (which is still around, but less annoying) and a constant sensation of the air pressure tickling the back of my throat (which fortunately has now abated).""

It is so great that someone understands what I am saying. Yeah, I have the constant awareness of my breathing also.

""You may want to look into getting The Highly Sensitive Person by Elaine Aron. It may help you cope better to understand why your body works the way it does. And to know that there are others like you who are hypersensitive to stimuli.""

I think I have that book somewhere in my residence. I will definitely take another look.

""As for your idea of starting off with a lower pressure (even though you know it won't be therapeutic) and working your way up to the needed 11cm: In principle this may be a decent enough idea---provided you start at a pressure you can tolerate. What I mean by that is this: Many many people find using a CPAP set to 4 or 5 cm causes more anxiety than using a CPAP at 6 or 7 cm of pressure. The reason seems to be as simple as CPAPs set at very low pressures can cause some folks to feel as though there is not enough air coming through the mask to breath comfortably. And, of course, when someone starts to feel they don't have enough air to breathe coming through mask, they start to feel anxious and sometimes start to feel as though the machine is smothering them instead of helping them.""

I agree that 4 or 5 cm would be inadequate. If I follow this strategy, I would start at 7cm.

Sorry, I wasn't clear about a few things. When I have put the machine on at 9cm or 10cm (with aflex relief), I am fine with the pressure.

My theory is that even though I am fine in trying to get to sleep, my hypersensitive body has an issue with the increased pressure and as a result, this results in premature awakenings.

""Since you're aiming for 11cm, see if you are more comfortable breathing at 7cm. If so, then leave the machine at 7cm for 3-7 days and then bump the pressure up to 8cm. If that's uncomfortable and your machine allows you to set the pressure at 7.5, then do that. After each pressure increase, leave the pressure alone for 3--7 days---UNLESS you feel like you're being SMOTHERED because you can't inhale enough air. In that case, bump the pressure up again immediately. At the end of 3--7 days, bump the pressure up by another 0.5 to 1cm. In this way you should be able to get yourself up to the needed 11cm in about a month or so at most.""

Great schedule, thanks and yes, I can do this in increments of .5

""First try some self help measures to try to get over the anxiety issues: Wear the mask during the daytime; get everything ready well before bedtime; if it's appropriate, try to ease into therapy by starting lower than you need and adjusting the pressure up on a regular basis; and work on keeping the mask on all night. But if the anxiety becomes really overwhelming, you may want to look into some short-term counseling. I'd suggest finding a counselor who is experienced with cognitive behavior therapy and how it can be used to reduce short term anxiety.""

I think simply focusing on starting low and going slow will really help. I feel like I engaging in an experiment with takes away the anxiety.

""As for working on keeping the mask on all night? The suggestion I'd make is to NOT allow yourself to fall asleep without the mask on---ever. If you've reached the point where you're tempted to tear it off and just go to sleep without it, then it's time to take the mask off, get out of bed, go into a different room and settle yourself back down. Go back to bed only after you are both sleepy enough and calm enough to mask back up when you lie back down in bed.""

Gotcha!

Thanks again, great post.

49er