new to CPAP, intro, looking for hope

[forgetcolor]

Hi All,

While I posted a short note a couple days ago about nose pain using a nasal mask, I wanted to post a proper intro. Diagnosed w/ OSA. Sleep study showed 15 apnea events/hour average, although it was none for first few hours and many more in the next few. Long-term sleep problems before this, including RLS (I take Requip), sleep onset insomnia, delayed sleep phase. Wife first mentioned I was gasping for breath in sleep a few months ago, although maybe going on before that.

Honestly, I haven't felt rested after sleep for many years (10, 20?). Just figured that's how it is. I'm very excited about the possibility this could turn around, but also a bit skeptical. Bed has, for many years, been a place I dread, a place where I can't do anything right. The idea of adding a mask to my face seemed laughable, but I'm trying it anyway.

So I've had the equipment since Tuesday. Did 4 hours in nights 1 and 2, 5 hours night 3, 7 hours last night. While I think these periods are promising, my experience is dreadful. I feel like I'm hardly sleeping when I have the mask on. I feel like I'm suffocating. I wake up constantly. I'm definitely in the walking dead category during the day. I never thought my sleep could be worse than it was, but the machine seems to be making the impossible possible.

All that said I'm still excited this might help me. I can't read a book anymore. I'm barely keeping up in my projects and work. I'm used to living with fatigue but this is too much for even me. I have a number of chronic pain issues that have emerged in the last 2-3 years and I'm hoping/wondering if solving the sleep apnea might help with those too.

Reading the posts I see a ton of problems. I'm hoping some people are getting good sleep with these masks on their face? Are my hopes about helping with muscle and soft-tissue based chronic pain founded?

thx

[kteague]

Welcome. You have every reason to be hopeful that in time your sleep will become a pleasant and rewarding experience. It seems to be an oft shared experience on here to seem worse before getting better. Once your OSA treatment is optimized and you are adjusted to all the new sensations, you will find out how much residual insomnia there is to address. Hopefully just breathing will resolve much of it. It took me a while to get used to the equipment, but I was dealing with bad leg movements at the same time. I just know that all the effort and adjustments were worth it. The 1st time I experienced just 2 hours of really good sleep the feeling was beyond fantastic. May that soon be your experience too.

[robysue]

forgetcolor,

Welcome to the forum! And I also bid you a sad welcome to the CPAP & Insomnia club.

While I posted a short note a couple days ago about nose pain using a nasal mask, I wanted to post a proper intro. Diagnosed w/ OSA. Sleep study showed 15 apnea events/hour average, although it was none for first few hours and many more in the next few. Long-term sleep problems before this, including RLS (I take Requip), sleep onset insomnia, delayed sleep phase. Wife first mentioned I was gasping for breath in sleep a few months ago, although maybe going on before that.

Honestly, I haven't felt rested after sleep for many years (10, 20?). Just figured that's how it is. I'm very excited about the possibility this could turn around, but also a bit skeptical. Bed has, for many years, been a place I dread, a place where I can't do anything right. The idea of adding a mask to my face seemed laughable, but I'm trying it anyway.

So I've had the equipment since Tuesday. Did 4 hours in nights 1 and 2, 5 hours night 3, 7 hours last night. While I think these periods are promising, my experience is dreadful. I feel like I'm hardly sleeping when I have the mask on. I feel like I'm suffocating. I wake up constantly. I'm definitely in the walking dead category during the day. I never thought my sleep could be worse than it was, but the machine seems to be making the impossible possible.

Although it is hard to believe it now, things will get better. It may take some time---particularly with your long history of sleep issues. The insomnia may get worse in the short term. Or it could get better. The important thing is to pay attention and if it's getting worse, start working on the insomnia NOW and not later.

As for the suffocating feeling: Are you using the ramp? If the ramp starts at 4cm (the default setting) and your pressure is set to something like 9 or 10 cm or more, then the low starting pressure of the ramp may be aggravating the feeling of being suffocated. You could try turning the ramp off to see if that helps.

All that said I'm still excited this might help me. I can't read a book anymore. I'm barely keeping up in my projects and work. I'm used to living with fatigue but this is too much for even me. I have a number of chronic pain issues that have emerged in the last 2-3 years and I'm hoping/wondering if solving the sleep apnea might help with those too.

Can't guarantee anything. But many of us do indeed see some real reduction in chronic pain. What kind of chronic pain are you dealing with?

For me, the very first positive thing about CPAP was that the hand and foot pain that I'd been waking up with for several years started to NOT BE THERE on some days. I first began to notice this about 5 months into therapy. For me the first 3-4 months of therapy were really hellish, but things slowly began to turn around after I started doing some serious anti-insomnia work with the help of a PA in my sleep doctor's office. I'm now 17 months into therapy. I still sleep weird hours---usually I get to bed sometime between 1:30 and 2:30 AM. But I wake up (without an alarm clock) by around 8:30 and I've got enough energy to get through the day most of the time. And now? I hardly ever wake up with the old hand and foot pain that was so common pre-CPAP.

Reading the posts I see a ton of problems. I'm hoping some people are getting good sleep with these masks on their face? Are my hopes about helping with muscle and soft-tissue based chronic pain founded?

For most folks---they come to the forum just like you did: As newbies who are having problems. Many of them stick around for a few weeks or a few months as they're working their way through the learning curve and troubleshooting their issues. And as those issues resolve and they start to sleep better? They give us a nice thank you and then tend to disappear---sometimes for good and sometimes for long periods of time, coming back mainly to post occasional updates on things like their CPAP anniversary. A few of us stick around to help the newbies---partly out of a sense of paying it forward for the help we got when we were new and partly for the satisfaction it gives us to help those in need.

So yes, there are people out there who are getting good sleep with the mask on their face. It took me months, but I've finally joined that club myself. On most nights it no longer bothers me to mask up. I fall asleep quickly. I still wake up, but they are short wakes and don't seem to bother me much any more.

[Country4ever]

forgetcolor.............hang in there. Most all of us have gone through what you're going through and we've made it through. One thing I wanted to mention was that when I started, I was using APAP. I eventually discovered that I was just too light a sleeper to tolerate apap. The constant changes in pressure would wake me up. Once I changed to straight cpap, I slept through the night. I just wanted to mention that, in case it may apply to you. Be patient forgetcolor.......it does get better and you will feel so much better.

[forgetcolor]

Thanks for all the kind responses. I've now had 5 nights on the machine, and each night I have a bit more endurance and the mask feels a bit more 'normal.' Last night I managed to sleep for about 3 hours before waking up with it, and that's much better than the previous evenings (usually it was 1 hour). Total time I could tolerate the mask was 7 hours last night (up from 4 on night 1). I'm still not feeling any positive daytime effect (quite the opposite, really), but I'm determined to give this all a real go so am in it for the long haul.

One question that keeps coming up for me is I don't know if I have CPAP or APAP. Is there any way to tell? They told me I needed a pressure of 5, and I presumed that's where the machine stays, but am not sure. Sometimes it seems easier, sometimes harder.

I am using a ramp, but the max ramp is 15 minutes so it's pretty quick.

Chronic pain: a number of issues. Bursitis in multiple areas, coccydynia, metatarsalgia (foot), carpal tunnel syndrome. All of this came up in last four years (I'm not that old: 41). Before that I was pretty carefree physically. I'm hopeful that regular good sleep will help my body deal with some of these issues in a way it couldn't before.

Thanks again for the replies. This board is really helping. I resisted coming here before getting the setup, hoping it would all just work. Glad I didn't wait any longer.

[Riorican]

Hi forgetcolor,

It sounds like you're increasing your time with the mask every night, which is good, but still feeling rotten and still feel like you are suffocating. Here's a link to the S9 clinician manual: http://www.apneaboard.com/CPAP%20Adjustment.htm
If the link doesn't work, go to Apnea Board and scroll down to the bottom. You'll find links for your machine or else will be emailed a link.

Once you get the manual you'll see how to get into the clinician menu to see if you are on straight CPAP or auto. You can also see what your settings are. If you have a copy of your sleep reports, look to see what the titrated pressure is. I think you said you are at 5. That's a pretty low pressure and may be the cause for the feeling of suffocation. Your pressure may have been set at 5-20 so eventually your doc or DME will adjust it to where it should be (a tighter range closer to the pressure that stops events if in auto mode). If you find it's set that way, that explains some of your issues. It could be too low of pressure to breathe comfortably. You may want to contact them about changing the pressure, or adjust it yourself (with guidance from more experienced users and using data from your machine).

You may also want to check the EPR relief. You can set it for 1, 2, or 3. This decreases the exhalation pressure so it's lower than the inhalation pressure and is more comfortable. This is something you don't need at a setting of 5, but may need if you raise your pressure.

Do you have access to the software to look at your data? You have two options to get to the data the S9 provides on the SD card in the back of the machine. You can download ResScan, Resmed's software, or Sleepyhead, software created by a forum member. Find one of Uncle Bob's posts and look at his signature. There's a link to the ResScan software. Here is a link to the Sleepyhead software: http://sourceforge.net/projects/sleepyhead/
Again, if link doesn't work do a search here on the forum for link to Sleepyhead. This is great software and is the one I use all the time now.

You need information about how your machine is set up, as well as data showing what's going on each night, and will do better once you look at those. Re: pain....I've lived with chronic spasms in my back since a horseback riding incident in 2003. For the first time, I've had significant improvement in that pain since being on CPAP. It will get better!

[forgetcolor]

wow, thanks for all that info. i'll check on settings.

one question: does loading up the software and pulling data from the card interfere with the compliance checking part of this thing for the insurance company? i know that after 30 days i'm supposed to return the card, and while I loathe that the insurance company's policies are driving my adjustment rate, i also can't afford to buy this thing myself so don't want to screw it up.

[robysue]

wow, thanks for all that info. i'll check on settings.

one question: does loading up the software and pulling data from the card interfere with the compliance checking part of this thing for the insurance company? i know that after 30 days i'm supposed to return the card, and while I loathe that the insurance company's policies are driving my adjustment rate, i also can't afford to buy this thing myself so don't want to screw it up.

SleepyHead doesn't change anything on the card at all. So the compliance stuff the insurance company will look at will NOT be affected by looking at the data in SleepyHead.

With ResScan you just have to be careful to make sure that you select to NOT ERASE the card when you are downloading the data.

[dtsm]

Warm welcome.

Compliance: it's an insurance thing and usually after the first 30 days, you won't have to do again.
It would be helpful if you listed your equipment, go to your user control panel to set up.

As far as your current trials and tribulations, we all go through it. Some folks take to cpap like a duck to water. Many of us struggle for days, weeks, even months -- but with perseverance and patience, it will change your life. I couldn't sleep with the mask for the first week so woke up in middle of the night to put on. Averaged 4 or so hours. Then I tried 4-5 masks over a 6 wk period before settling in with a nasal pillow model. Trial and error with cpap and apap, EPR, ramping, etc. etc. 4 months later masks switched again. Two plus years into the hose, I can't sleep without it!

Hang in there, we're here to help.

[Maxie]

There is hope and I feel like if you keep on keeping on it will happen for you. I came to this forum feeling like sleeping with a mask on my face was the most unnatural thing I could think of but now I can tell you from being on this forum that first of all, some of the nicest, most helpful people in the world have sleep apnea from my experience here and secondly if you keep reading the forum, you will read many success stories. People tend to come with problems and seek help but don't often come back and give the results. I have followed many of the suggestions given here and last night as I was about to fall asleep I realized that it has happened. It being that I am perfectly comfortable going to sleep hosed up and I wish that there was a way to thank all of the people here who have no idea how much they helped me. Even my partner keeps saying the he never would have thought I would get to this stage of peacefulness about the mask, etc. It's a process and I was determined to make it work and as long as you are sincerely determined, you will be here telling us how it all came together for you! Hope is here.

[xenablue]

Hi, forgetcolor and welcome!... to the club no one really wants to be in.

You have a great attitude, and IMHO, this is key to success with therapy. It's absolutely not natural to sleep with a mask strapped to your face, attached to a machine.
However, once you get used to sleeping this way, you may even come to crave bedtime and donning your mask, because you know you'll be getting good quality sleep with your airway open as it should be.
Few take to XPAP therapy like a duck to water - for most there is a conditioning period, some longer than others. If you maintain your great attitude, remain patient with yourself and read a lot here and ask questions, you will do marvellously! There are some wonderful folk here who've been-there-done-that and can give you advice, ideas and support for pretty much any OSA or related issue.

Cheers,
xena

[Sleepy Taz]

Forgetcolor,

To date you have received tremendous advice and encouragement. The success of Cpap therapy is dependant on many things including; finding the right mask, learning to understand data and use that information to fix problems, and having a positive attitude. There are others but this is a good starting point. It was easy for me as in my initial sleep study when I awoke from my titration I was so rested and had energy that I hadn’t felt in years. This made me determined to work through any initial problems and adapt as quickly as I could. There are many that take longer, so patience is needed. In this forum are many knowledgeable people who can help you achieve Cpap supremacy and in turn you will probably live a longer and healthier life. Once you become accustomed to therapy you may find an inner peace and your struggle with sleep time and the use of your bedroom an enjoyment. Good luck

Taz