New to CPAP, having difficulty adjusting to it

Hey folks,

Brief background: I did a sleep study at the behest of my doctor in January, and they found that I had an AHI of 120. Doc prescribed me a CPAP machine set to 13 (ramp 7). Brought it home last Sunday and gave it a go.

The first problem I had with it was claustrophobia with the FFM. I would awaken in a panic and rip it off. After a couple of nights, this improved, but I still felt a bit trapped in my mask. So I went back to my DME provider and grabbed a nasal mask and chinstrap. I'm a mouth breather and huge snorer, so I wasn't sure how this was going to go over.

Tried the nasal mask and didn't like how my hot exhaled air seemed to be getting trapped in the now smaller mask area. Ice cubes and cold water in the humidifier did nothing to alleviate this with the nasal mask (it does help a lot with the FFM).

So I went back to the FFM. Problem is, I'm waking up every 45 minutes or so. It's still very unnerving, and I awaken with a sense of panic and feeling a bit suffocated. I feel suffocated when I first put it on too, not in the way that there's not enough air, but rather I'm not getting a proper exhale, so I feel that CO2 is building up inside my lungs. Could just be the pressure. I've tried the ramp feature, and that does help with that sensation, but it doesn't prevent me from waking when the pressure rises (my ramp is 45min). I have messed with the C-Flex+ settings on my machine and currently have it set at the most gentle level of 3.

Another problem is I have a very hard time falling asleep with the equipment. The mask leaks despite every adjustment. The only way I can get it to not leak is to lay on my back, but I'm a side sleeper and sleeping on my back is not comfortable. The DME provider told me I have one mask swap (which I've used to try the nasal mask). Anything else I want to try I have to buy. I also had no say in the machine that I received, not that I would have known at the time what to expect anyhow. I'm bringing up these points because I'm starting to feel frustrated about how I am ever going to adjust to CPAP when I have to pay out of pocket for everything. I've read polls on here of people trying 5, 10 different masks before finding the one that suits them. Well how in the world did you do that without forking out $100+ per mask? Or is this just an expense that I need to deal with? I've also noticed some of you have "ASV" machines, which I think are auto sensing models, and judging by comparing what I have on cpap.com to those types of machines, it would appear that I have a pretty entry level machine. How would I know if I would take better to a different machine? It seems ridiculous that the DME provider won't let me trial machines or masks before obligating me to purchase them. If all they're there to do is sell me equipment, I think I can manage that myself online for cheaper.

Last night I didn't use the machine at all. Well, I tried, twice, but couldn't relax. This is getting to be very depressing, because sleep is something that I really used to look forward to. Perhaps it's because I was tired from actually not sleeping, but the perception I had was that night time was a good time. Now it's a nightmare. I don't know how I'm ever going to use this thing for the rest of my life when I cannot tolerate it for a week. Most say hang in there, it'll get better. But over the course of the week, it's actually gotten worse. I think I'm developing pretty bad anxiety about it - to the point that this week I've been having a massive amount of heart palpitations. I may have sleep apnea without it, but I at least mostly sleep through the night. Now I'm sleep deprived AND anxious because of it.

I'm mostly venting here. I tell myself that I need to keep a positive outlook on this, and I try.

Edit: I have the PR System One Pro Cflex+ machine. IDK why it's not showing in my sig despite it being selected in my profile setting.

What is the model number on the bottom of your machine? 3 digits on the bottom of the blower unit.
Whatever you chose in the menu isn't showing up.

Mask swapping...it's the DME making its own in house rules when they say only one swap.
The mask manufacturers themselves allow 30 days per mask and the DME who only says one swap is just lazy and simply doesn't want to do the paperwork involved to get credit for masks that get returned.

Check with your insurance company to see if there are other DMEs in your area that you can use and call them up to see what their mask trial policy is. You can change DMEs.
This holds true for the machine as well...one week into treatment....if you don't have a full data machine and want one.
Again, check with your insurance company...is your agreement a rent to own thing or straight out purchase?

If you do have a non full data machine..have you read this? Especially the part about what your options are. http://maskarrayed.wordpress.com/

Definitely insist on trying another type of FF mask, the Amara hasn't had very many good reviews. And make sure you're measured correctly. Also can you get your Dr to lower the pressure a bit while you're adjusting. You may not even need the higher pressure once you're settled in your own bed without all the wires, etc. While you're doing battle you might even try to switch your machine to an Auto. It's a lot to ask but worth it if you can do it. Good luck and keep us posted.

Thanks for the replies! I updated my sig w/ the machine in the comments. What I didn't note is the 3 digit model on the underside: 460P. It has an SD card, and it does collect data (I've verified through the on-screen menus). I'm also aware of software such as SleepyHead, which I've installed, but I haven't analyzed any data yet.

I wasn't measured at all for the mask. They just tossed one on me and hooked it up while I was sitting in a chair. Well, they tried a few different masks, but no actual measurements were done.

I'm going to make an appointment with my doctor today to discuss these things with him. I'll ask him about other DMEs.

Check out the Hybrid Mask by Innomed. LINCARE, in Colorado Springs, carries about a dozen or so mask. The person I got to also is a CPAP user and knows how people feel and issues they mighty encounter.

It's still very unnerving, and I awaken with a sense of panic and feeling a bit suffocated. I feel suffocated when I first put it on too, not in the way that there's not enough air, but rather I'm not getting a proper exhale, so I feel that CO2 is building up inside my lungs. Could just be the pressure. I've tried the ramp feature, and that does help with that sensation, but it doesn't prevent me from waking when the pressure rises (my ramp is 45min). I have messed with the C-Flex+ settings on my machine and currently have it set at the most gentle level of 3.

That is only a perception and not reality, so is the idea that you are suffocating.
Do try to spend quality time with your mask on and the machine at full pressure while watching TV or playing a video game. The idea is to get your mind off the whole thing and to teach it that this is fine.

I used to do fabric dyeing. To mix the dyes you wear a full face mask with those little canisters that you have to suck the air through. When you first put it on you think you will die soon, by the end of the 30 minutes of carefully measuring and mixing the dye powders and preparing the solutions you walk out of the room forgetting that you have it on, because you had a job to do, an important thing to focus on and your body knows what to do and how to do it.

If you have a model 460 machine then the choice in the menu should be for
PR System One 60 Series Pro Cpap and it should be a working link.
The PR System One Pro Cpap is the 450 model and that link is broken.

Go here and measure with the template you can print off for the full face masks and the nasal mask...
tell us what size you come up with...I might have a couple you could try if size is close.
Forum member sometimes donate unwanted masks and I just had a box full come back to me that someone tried.
They are slightly used and meant for sizing and to get an idea if you even think it is workable so you don't have to spend a lot of money otherwise...or to help out when DMEs are buttheads about the 1 swap thing.
http://www.resmed.com/us/assets/html/ma ... lates.html
The templates will at least get us close in the sizing department.

Ah hah, thanks. I've updated my profile. I selected based on what the machine said on the top. But now it makes sense why the 60 series humidifier was the only option with the heated hose that I have.

I've printed the templates. I'll report back with results!

Another alternative is the nasal pillow style mask. If the nasal mask would have worked for you except your nose got hot *smile*, and you can deal with the mouth-breathing issues, a nasal pillow mask might well work for you. They deliver the air right up your nose, so there's no air on the outside of your nose. And the headgear can be minimal and lightweight, since all it has to do is help to keep the nasal pillows in your nose, not make a larger seal area stable. Been working well for me for some time now, I'd recommend you at least try a nasal pillow mask, you can get return insurance from cpap.com if your DME won't cooperate *smile*. You will need your prescription if you go the cpap.com route, but I just had cpap.com ask my sleep doctor for it, and he complied by sending it. No problem. I did tell him that they would be asking for it, though, we have a messaging facility available that allows us to send messages to our doctors here, and get replies.

Hope that you find the mask that will allow you more sleep. One thing that helped me initially was to take Ambien for the first week of cpap use to get used to going to sleep with all the noise and gear. Even now I sometimes just take off the mask when I wake up after about 6 or 7 hours of sleep and can't get back to sleep. Not totally recommended, but seems to help me get more sleep *smile*.

Is your machine set for C-Flex or C-Flex+ pressure relief?

I have the same machine as you and it was set to C-Flex when I received it. The C-Flex+ setting soothes out the transitions between inhale pressure and exhale pressure, and is much more comfortable for me. I had to get into the provider setup menu to change it to the + setting.

I gave up on the ramp function after a couple of nights and just start it at full pressure. I found that when the machine ramped up the pressure the mask started to leak. I found it best to adjust the mask at the full pressure.

Gary

Hey, Roy, I'm a mouth breather like you. Had EXACTLY the same experience with the full face mask and the nasal mask. Full face was just an all-around disaster. Nasal mask was pretty cool the way it worked, but couldn't sleep with it at all. Solution was Nasal Pillows. 10 years now and I sleep like a baby. My AHI is always under 2. I use the Respironics Optilife headgear. You might have to try a few different systems but nasal pillows is def the way to go.

One thing I like about Optilife is that I can buy replacement pillows and straps on eBay for less than what my 10% co-pay would be if I bought it through my DME!! But I don't do this too often because a set of pillows will last for years (I have never worn out any so I really don't know) and the straps last for like 1-2 years.

Drone: Thanks for the info. Since you're a mouth breather, I assume you have to wear a chin strap with the pillows? Or does the chin support of the headgear suffice?

Gary_UT: C-Flex+. I have it set on 3. It's not always a problem, just sometimes. I think my anxiety is getting the better of me.

RogerSC: I think i'm going to try nasal pillows. And Ambien is on my wish list for when I go to the doctor in a week.

atltroy:

I full well know the dilemmas you're experiencing.

Beginning CPAP one year ago, I had many of the problems you've mentioned but have found nocturnal bliss as I adapted to the CPAP gear and the way it works.

This is a the four-step program I devised. I had a tremendous sleep study at the local krankenhaus but ran into a granite roadblock as I attempted to get accustomed to masks on my own. You might want to give this a try:

My main advice is to back away from immediately trying to do all-nighters with your CPAP equipment. Use my four-step weekly plan WHICH WORKED WONDERFULLY for me:

1) During the first week sit, watch TV, or read with your equipment whirring away next to you. Get accustomed to the sounds, feelings of the moving air, and all the external trappings of the great chance at quality sleep you are nearing. Do NOT go to bed with the equipment.

2) Take the phone off the hook, draw the shades, evict everyone from the house, don't think about any nearby clock, and loosen your clothing as you lie on your bed in mid-afternoon. Turn on the CPAP gizmo, put the mask on your face, and close your eyes. Think peaceful thoughts, whatever they are to you. At some point in the week you WILL fall asleep. After you have this nap, you'll be amazed at what a refreshing experience it was.

3) During the third week have all your CPAP gear ready for action as you go to bed for the night. As you've done so many times throughout the years, you'll awaken far before morning. When you do, slap the mask on your face and turn on the CPAP gear before your groggy brain has any idea what's going on.

4) After successfully completing the first three steps at your pace, decide on a night (mine was March 3rd) when you have full confidence and will retire for the night WITH your mask on. You'll succeed!

My biggest mistake was expecting everything to go perfectly from the first night. One must be patient and keep anxiety as far away as possible. Come March 3rd, I plan on some sort of goofy celebration to mark one year of refreshing sleep I never had - over four decades - before last year.

Best of luck and God bless.

There is one thing that helps some people that breath through their mouth at night, which is tongue position. If you try to keep your tongue pressed against the roof of your mouth, not pushing on your top teeth, but just behind them, this essentially prevents the air from the cpap from coming out through your mouth even if it's open. I've worked on this one enough that it has become pretty normal for me.

This does work, you can try it out with your cpap, and get a feel for it. If you can make this work for you, then you can use one of the minimal nasal pillow masks that I mentioned above that are much lower impact than a full face mask.

Just a thought.

atltroy wrote: So I went back to the FFM. Problem is, I'm waking up every 45 minutes or so. It's still very unnerving, and I awaken with a sense of panic and feeling a bit suffocated. I feel suffocated when I first put it on too, not in the way that there's not enough air, but rather I'm not getting a proper exhale, so I feel that CO2 is building up inside my lungs. Could just be the pressure. I've tried the ramp feature, and that does help with that sensation, but it doesn't prevent me from waking when the pressure rises (my ramp is 45min). I have messed with the C-Flex+ settings on my machine and currently have it set at the most gentle level of 3.

Sounds like you're having problems adjusting to exhaling against the pressure even with the C-Flex+ turned on. I remember that feeling all too well from when I was a newbie. It's not the problem that it once was, but I'm now using a BiPAP instead of a CPAP and that made a huge difference to me both in terms of aerophagia and the sensation of not being able to properly exhale.

You said your pressure is set to 13cm and that the ramp starts at 7cm. You also said the problem is not so bad during the beginning of the ramp period. You should contact the doc's office and report the problem. Tell the person who answers the phone that you need a call back from the sleep doc or a nurse or a PA. Tell the doc, nurse or PA about the problem and be sure to mention that you feel as though you just can't fully exhale all the "bad air" out of your lungs when you are trying to get to sleep with the mask on or when you wake up in a panic after falling asleep with the mask on. The doc may be willing to (temporarily) reduce your pressure by several cm to see if that helps. If the AHI stays acceptable, it could be that you don't need as much pressure as the titration study indicated. If the AHI goes up too high, then you can incrementally increase the pressure by 0.5 cm every week or so until you can tolerate your full prescribed pressure.

Another problem is I have a very hard time falling asleep with the equipment. The mask leaks despite every adjustment. The only way I can get it to not leak is to lay on my back, but I'm a side sleeper and sleeping on my back is not comfortable.

With a bit of work it should be possible to make almost any CPAP mask work for almost any sleep position. So the first thing you need to do in terms of the mask is to learn how to fit the mask when you are on your side. You may find that you'll have to have the straps asymmetrically adjusted for side sleeping as opposed to a more symmetric adjustment for back sleeping. A special CPAP pillow might help so that there's a hollow for the mask to settle into. Or a soft squishy feather pillow or buckwheat pillow might be easier to use since you can mold them into a shape that allows for the mask to not be pushed around by the pillow. Mask liners might help as well.

I've also noticed some of you have "ASV" machines, which I think are auto sensing models, and judging by comparing what I have on cpap.com to those types of machines, it would appear that I have a pretty entry level machine. How would I know if I would take better to a different machine? It seems ridiculous that the DME provider won't let me trial machines or masks before obligating me to purchase them. If all they're there to do is sell me equipment, I think I can manage that myself online for cheaper.

I think you are confusing APAP machines with ASV machines. For run of the mill OSA, a CPAP or APAP is the machine of choice. The ASV machines, which are much, much more expensive, are for treating central sleep apnea, which is a different can o'worms. Notably, it's also much more difficult to adjust to sleeping with an ASV machine than a simple CPAP or APAP.

The PR System One PRO (model 460) is a GOOD machine that records full efficacy data. It's equivalent to the Resmed S9 Elite. Sure, it does not have an Auto mode, but many people do just fine on a fixed pressure setting. The important thing is the data---you apparently did not get stuck with the System One PLUS (model 260) or the even more limited System One Series SE (model 220) neither of which record full efficacy data.

Last night I didn't use the machine at all. Well, I tried, twice, but couldn't relax. This is getting to be very depressing, because sleep is something that I really used to look forward to. Perhaps it's because I was tired from actually not sleeping, but the perception I had was that night time was a good time. Now it's a nightmare. I don't know how I'm ever going to use this thing for the rest of my life when I cannot tolerate it for a week. Most say hang in there, it'll get better. But over the course of the week, it's actually gotten worse. I think I'm developing pretty bad anxiety about it - to the point that this week I've been having a massive amount of heart palpitations. I may have sleep apnea without it, but I at least mostly sleep through the night. Now I'm sleep deprived AND anxious because of it.

Yes, I know you don't want to hear it, but hang in there, it will get better *. It is NOT at all uncommon for things to get worse before they get better. And it probably won't get better real quick---it takes most newbies a month or two before they manage to straighten everything out and start to sleep well with the machine. It takes some unlucky PAPers many months to start sleeping well with the machine. And it takes several weeks to several months of "sleeping well with the machine" before many of us notice much improvement in how we feel and function on a day to day basis.

* In all honesty: I know you are sick of hearing that phrase. God knows I grew to hate that phrase during my own very, very difficult and long adjustment to PAP therapy. In my case insomnia set in within the first week of therapy along with some really serious aerophagia problems. And I spent a lot of time here venting and I got some really good tips on how to deal with the insomnia. But it still took a two official pressure changes, a change of machine (with another titration study) and yet another pressure change, before I was comfortable enough to start battling the insomnia monster with real help from my then sleep doc's PA, and it took another 5-6 months of fighting the insomnia monster before I really started to feel like I was actually starting to sleep as well or better than I did pre-CPAP.

So for now, here's my advice on how to get through the next week or two:

1) Contact the sleep doc's office and keep them in the loop. Let them know that you are now dreading bedtime whereas in your previous life, you enjoyed bedtime. They probably won't be much help, but occasionally a sleep doc (or his nursing staff) actually does listen to a PAPer's problems and comes up with workable ideas on how to tackle them. Be sure to mention the problems exhaling and also be sure to mention the fact that you are now dealing with anxiety that is powerful enough to trigger heart palpitations.

2) Deal with the anxiety rather than ignoring it. There are all kinds of ways of dealing with anxiety and I haven't the foggiest idea of what works for you. But try to relax and not think about the machine when it's not close to bedtime. And if you are someone who can do mind relaxation exercises or mindfulness exercises, doing them after you mask up may also help. [Unfortunately, deep breathing (one of my favorite relaxation techniques) just does not seem to work (for me) when I'm using my BiPAP.]

3) As hard as it is to do, try to NOT focus on the "I have to do this for the rest of my life". As much as possible, try to take it one night at a time. When you are sitting there in bed dreading putting the mask on, try to focus on just this one night: I'll try just for tonight to wear the mask makes the idea masking up is easier to swallow than reminding yourself that this crazy contraption is forever.

4) Try really hard to put the mask on each night at bedtime. If you are not asleep in 20-30 minutes, get out of bed and do something to relax and get your mind off the machine (for a bit) and start to get sleepy again. And then try once more to get to sleep after putting the mask on