Complication fears. Lots of worries.

My compliance with CPAP lately has been gradually improving, but very slowly. I have an extremely hard time keeping my mask on all night, this is my only issue with treatment right now. Most times it comes off in my sleep, and I never wake up enough to realize I took it off and put it back on. I'm hoping this gets better with time, but my patience is running thin. I want to be able to sleep all night with my mask. I need to. I have no issues with comfort or anything along those lines. I don't mind using my CPAP at all, it just won't stay on my face all night long. I'm guessing my brain hasn't fully accepted this new piece of equipment that needs to be on my face all night and therefore I continue to remove it after a few hours of sleep each evening.

I'm afraid that being so young I am destined to encounter many complications that come with OSA. I'm only 24 years old. Sadly I am overweight, at 220lbs. This is something I am trying to work on, but with having low energy levels I come up with all sorts of excuses not to excercise. It is something I am working on though, aside from a full night of CPAP rest as priority #1, weight loss is a very close second.

Basically this is a post just to vent. I'm scared. I've been officially diagnosed with severe OSA for 8 months now. As I said compliance has been off and on but within the last few months I have never gone a night without using it. I am not sure how long I had OSA before being diagnosed although symptoms seem to come on fast and hard.

I'm scared that being so young I'll end up with things like insulin resistance and even higher blood pressure (mine has been up for a while now, being treated) I also have horrible anxiety which I take medication for. Between all this, I can't fathom the idea of having to deal with other complications, specifically insulin resistance. Having my anxiety disorder, I am fixated on health issues. I have bad health anxiety and my number one fear of disease is diabetes, so insulin resistance is close enough in my mind to diabetes. And maybe I am mis-informed but it's my understanding that there is a connection between OSA and insulin resistance. I am hoping my young age might work in favour for me and I can work on weight loss and total CPAP compliance to eliminate the worry. In reality, my hope is to at least use CPAP ALL NIGHT, this would at least help lessen the probability of some complications.

I hope that I can really get a full nights sleep with CPAP every night. I would feel so much better and it would take away some of the extra added fear of complications. I have the proper equipment to get everything treated properly, but I just can't seem to be 100% compliant, and I want to be.

I'll take any words of support and encouragement, anything to keep me going and help ease my mind!! Thank you for reading.

Keep trying! My thoughts are that the treatment of sleep apnea is fairly new, so look at how many centuries went by untreated. Sure, it's not good for your health, but you are headed in the right direction. Smartin' off to an officer of the law is unhealthy, but folks live through it (sometimes barely). Keep up the good work and don't stop trying.

Have you tried taping the mask to a few areas on your face so that when you remove it during the night you might be awakened by the minor discomfort of removing the tape?? So then you could put the mask back on?

I pull my mask off many nights after a couple hours of sleep. I even reach over and turn off the ASV so I must have been awake. I usually wake up a few hours later realize I'm not sleeping well, and put it back on for the rest of the night. Last night, I had it on for 2.5 hours off for 2.5 hours and on for 2.5 hours. So, my average since starting in November is a little under 5 hours a night. Here is what I am going to try next. I will wear my pulse oximeter with the alarm set audible. Then if I take my mask off and the inevitable hyponeas begin, it will alarm and remind me to put my mask back on and turn the ASV back on.

Thanks for the replies.

I could try the tape, and I have heard that suggestion before. I suppose I am a little reluctant to put more stuff on my face. But I think this is a wise next choice. I shouldn't need much tape, and I am sure I'll feel that come off in my sleep. It's frustrating when I put in all the effort to put it on every night and then take it off in my sleep. The sleeping half of my mind needs to be compliant!

NewToCPAP wrote:I could try the tape, and I have heard that suggestion before. I suppose I am a little reluctant to put more stuff on my face. But I think this is a wise next choice.

I know we don't want to add any more stuff to our face but hopefully if the tape helps it won't take too long for that stubborn part of your brain to learn it is okay to wear the mask and thus leave things alone.
Sure won't hurt anything to try, not much tape is needed.

NewToCPAP wrote: Complication fears. Lots of worries.

There is a good chance that both your weight gain and your anxiety are a result of untreated sleep apnea. Even though you are only 24, you most likely had sleep apnea for a long time before it was diagnosed.

The female sleep technician at one of my sleep lab visits told me her story. She was treated for anxiety from age 18 to 24 by a mental health counselor and a psychiatrist. Then she had a sleep study and started CPAP. After some short time the anxiety went away. Sleep apnea was her problem all those years!

Once you solve the problems with the mask you should have more energy, find it easier to lose weight, and find the anxiety diminishes or even vanishes. Be patient with those issues now and as your health improves it will become easier to deal with problems that arise.

Are you aware that Respironics offers software for the machine in your equipment profile that will track the effectiveness of your therapy each night? There is a chance that during the hours you do wear the mask the therapy is not working properly and you are still having some apneas. The software will show you the details.

Most of the regular members here use such software and have found it valuable, or even required, to get good therapy.

One of the nicest "side effects" of CPAP therapy is a reduction in anxiety. Think about it--while you have severe apnea, your central nervous system is "bathed" in adrenalin all night long in your body's attempt to get you to BREATHE. You should see a signficant reduction in your anxiety levels when you are able to use the CPAP all night, every night, every time you sleep.

So for you, compliance is "Job 1". Keep at it and you will reap the benefits. It WILL reduce your feared complications. You will have more energy and less of the hormones circulating that cause the weight gain and impair your blood sugar and blood pressure. You may have success losing weight once the apnea is under control. Your chances of diabetes and complications of hypertension will diminish.

The best approach is to tackle the barriers to full compliance one at a time until you have them licked. You CAN do this, and you will benefit greatly when you succeed.

Let us know what help you need.

I don't know if this goes against what most folks here would say - but I'd ask for a prescription for anxiety medication. Klonipin works wonders...

Do you have a leak alarm on your machine? If so, make sure its turned on. Maybe that would help you wake up more to put the mask back on. Hang in there!!

Thank you for all the quick replies, I really appreciate it.

I am going to use some tape tonight and see how I do with that. As far as I know my CPAP does not have an alarm feature. I am using a PR System One REMstar Auto CPAP w/ A-Flex. If my machine does have that feature I would love to know how to enable it.

I do take medication for my anxiety, however lately it hasn't been doing so well with my little short-term health anxiety flare ups.

Using my CPAP software has been mentioned before and I never paid any attention to it. Now that I am really taking the OSA far more seriously, I am thinking I'd like to get more information on my treatment. I know I'll need an SD card reader and also the software. I'll need to look into this further. My problem is, I don't think I'd have a single clue to interpret any of the data. I can see from browsing the site that there are plenty of knowledgeable users here that may be able to provide some support? I would love to do this versus making an appointment with my sleep therapist all the time. That and the fact that after your setup and do a couple small follow-up visits they only want to see me yearly (unless I call to make my own appointments)

I do recall one of my earlier appointments my sleep therapist stated my AHI (clueless to these results still...) was 8, and he was pretty content with that. I know my minimum pressure is 6 and max is 12 on my CPAP as well. From brief reading I understand my AHI should be much, much lower. Earlier data read by my sleep therapist also showed some brief central sleep apnea episodes but he wasn't overly concerned. A repeat sleep study should be in order soon actually.

My sleep therapist also agreed that I've probably had OSA for a long time without knowing it, which is strange. I have never been a snorer until I hit my 20's, probably from weight gain. And I swear my symptoms came on fast and furious, within a month and a half I "self-diagnosed" myself with OSA. I knew I had it, but previously my doctor never sent me for a sleep study until I further convinced him. Anyways, turned out to be severe OSA (thanks, Doc!) This is irrelevant, I am just trying to say that it seemed like I went from a "normal" sleeper to full blown OSA in as little as two months.

I am going to look into getting the software for my machine.

I appreciate all the responses so far, this is great. Feeling a little more positive about things, and really looking forward to getting my sleep sorted out, I'll just be patient and take things one at a time.

Country4ever wrote:Do you have a leak alarm on your machine? If so, make sure its turned on. Maybe that would help you wake up more to put the mask back on. Hang in there!!

Does the S9 have a leak alarm? I haven't come across it in the menus.

There is a leak alarm you can access from the clinician's menu. I haven't tried it, but I've been told that it's not really loud enough to wake you from a sound sleep.

When you get the software, check out my blog and look for the Respironics Data Tutorial. That will help you understand what you are seeing. I think the Encore Viewer software is pretty easy to read and understand. Our host at CPAP.com has the software. Don't buy your card reader from a CPAP supplier--any standard SD card reader will do, and you can find them for as little as $5 IF you don't already have a slot on your computer to read them.

NewToCPAP wrote:As far as I know my CPAP does not have an alarm feature. I am using a PR System One REMstar Auto CPAP w/ A-Flex. If my machine does have that feature I would love to know how to enable it.

It should have an alarm but if it is like my machine, not very loud and sure didn't wake me when I took my mask off during the night. But then I never notice machine sound or mask venting sound, so could be my hearing...though recent tests say it is fine.

If don't you know how to get to where things can be turned off and on take a peek here. Might be called "Mask Alert" or something along those lines in the clinician setup.

http://www.apneaboard.com/PR-System-One ... -Setup.htm

I actually think my laptop has an SD card reader built in, so that's a bonus. Is the CPAP software free? I am leaning towards no but have heard of some various ways of obtaining the software.

It'd be nice to look at some data this evening .