Hello Everyone and a little reassurance please

Hello everyone!

I am so glad that I have found this forum. I realize that I haven't been on here before, but I do have some questions and concerns about using my CPAP device. Thanks in advance for any feedback or assistance you can provide.

Within the past three weeks, I went for my initial consultation, two overnight studies and a followup visit. These all resulted in me getting the CPAP device. I was diagnosed as moderate on the Respiratory Arousal Index. They currently have me on a pressure of 6. So here's what's going on. My sleep has been horrible since getting the device. It has been 5 nights. I am constantly waking up, except now, it is even harder for me to get back to sleep because I am worried that the mask isn't on properly or I will break the air hose or any number of other things related to the CPAP machine. When I do sleep for more than 2 hours, it is a much better and deeper sleep that before the machine. I suspect that this is a fairly common occurrence with folks just getting the machine, but I really don't know. I know that having something on my face and straps around my head doesn't allow my body to feel like it wants to sleep. I have only taken the mask off my face once in the past 5 nights.

Is this normal? Are their any tips or tricks to get through this initial period?

Here are the particulars of the device that I got. It's a ResMed S9 AutoSet with the Heated Humidifier. I am using the ComfortGel Blue mask.

Hoping for better sleep,
Mark

Mark: Warm welcome to cpaptalk.com.

What you're experiencing sounds exactly like how I felt my first few weeks [6 wks] with cpap. Everything is weird, nothing seems to fit correctly, all sorts of crazy sounds, fear of leaks here and there. I also experimented with nasal masks and then nasal pillows to determine what was most comfortable for me. Had a comfort gel for first 2 wks, switched to easylife nasal mask for few more weeks and then the nasal pillows [LT, Fx and Headrest].

Some folks settle in immediately; others, like you and I will take time and patience.

You've got a good piece of equipment, read up on using the software and be patient....it will come.

dtsm wrote:Some folks settle in immediately; others, like you and I will take time and patience.

You've got a good piece of equipment, read up on using the software and be patient....it will come.

Welcome to the forum! I agree with dtsm and his comments. The fact that you can see a benefit when you are able to sleep with the cpap for a couple of hours says to me that you will make it.

I was one of the lucky ones that settled in after about 5 nights, plus finally getting the right mask helped a lot.

Keep working at it, read here and ask for help when you need it. People here will help you along and before you know it, you'll be an expert at this.

Hello Mark. Glad to see you have found this site. You will find answers and recommendations that are heartfelt, literally, and meant to give you the best support and hope that you can find just about anywhere. So, welcome, and good luck on your journey.

For me, wearing a mask with pressure was an invasion into my most personal intimacy that I didn't want breached. I think only cpap users can totally under this concept. I want nothing on, or near, my face when I sleep. Nothing. No exceptions......except, of course, death to my human body if I didn't accept this insulting intrusion. I think I was close when I came to the dark side. My oxygen sats were getting down into the mid fifties (gasp!) and I stopped breathing once every minute. I believe I was pushing the limits for me. Anyway......

Know in your heart that you have made a committment to this therapy. Make a pact with yourself not to sleep without the mask on your face. Feeling smothered and/or tearing the mask off your face mid-night are fairly common occurances so know this and deal with it the best you can. In the beginning for me, I would just get up for a short period and when settled down, go back to bed and start over. Most of the time, this would work for me.

Work with the mask! Look for solutions if you have any leak problems. In my opinion, the mask is number one in any pap therapy. The whole outlook changes when you have eliminated leaks so work at this one issue until you have a mask that works for you. You will get the best advice on what to look for whatever problem you are having so, just ask.

Practice with your equipment in any available time for you. Sometimes when watching tv is good. You can work on fit problems as well as logging time and getting used to having this health saving device strapped to your good looks. Any time with it is good time spent. Enough for now, welcome again, I look forward to seeing posts from you in the future.

Big S wrote:Practice with your equipment in any available time for you. Sometimes when watching tv is good.

This is exactly what I did, probably for the first few months of my therapy. I went back to bed early, masked up and sat up watching TV for a while. This allowed me to get used to the mask and pressure, but not trying to fall asleep right away.

I think in my situation, doing this helped me a lot.

Big S wrote:

Work with the mask! Look for solutions if you have any leak problems. In my opinion, the mask is number one in any pap therapy. The whole outlook changes when you have eliminated leaks so work at this one issue until you have a mask that works for you. You will get the best advice on what to look for whatever problem you are having so, just ask.

Bump +1

mstarkman wrote: I do have some questions and concerns about using my CPAP device.
Mark

Ode to a newbie: How easy it is.

I wish I could tell you how easy it is.
I put on the mask, I hit the blue light,
I'm adrift in the night.

It did'nt come easy you know,
infact it was a fright.
The straps and that mask,
....and....damn those blue lights,

I screamed and swore,
and cried out in the night,
"Why me? Why me?"
This just isn't right.

Out of thin air, through the ethernet,
came a glimmer of hope, as I cried out my plight,
"..please, don't spook me, don't scare me,
I just want to sleep through the night."

My questions were answered,
my mind put at ease.
We're here to help you,
all you got'a do....
is believe.

So, I listened and learned.
I chin strapped and glued,
and sealed up the holes.
I had tender, scraped nares
and a bruised, bleeding nose.

Night after night, I begged for relief.
"Please, please...give me back my life!"
Then one morning, just after first light,
a release from the pain, the fatigue,
just ever so slight.

Now.....it's just that easy.
I put on the mask, I hit the blue light,
I have a new life.

carbonman wrote: My questions were answered,
my mind put at ease.
We're here to help you,
all you got'a do....
is believe.

Love your Ode, Carbonman. The excerpt above is what I feel made such a difference for me. When I came here I was told I could work through everything and be successful, and since those saying it had journeyed this way before, I believed them. They were right.

This is the part I love!

Carbonman wrote:
I put on the mask, I hit the blue light,
I have a new life.

mstarkman,

It is spooky how much happens (and happens so quickly) following an OSA diagnosis. And not sleeping well for the first couple of weeks (maybe even months?) is pretty common. But ...

I was diagnosed back in August and started on CPAP therapy in late September 2010. And for me, starting CPAP triggered a nasty bout of severe insomnia. And I do mean severe. I've always been somewhat prone to insomnia when under stress, and learning to sleep with a hose on your head is stressful. But by the beginning of November it was clear that the insomnia was getting worse, not better, and by the end of December (after switching to a BiPAP finally relieved the worst of my aerophagia and other pressure-related issues), it was clear to me that while starting CPAP may have triggered the insomnia, the insomnia was now feeding on a vast number of things---many of which were not related to xPAP in any concrete way. I am now doing hard cognitive behavior therapy with the PA in my sleep doctor's office to combat the insomnia so that I will (finally) start feeling the full benefit of using my BiPAP every night.

I'm telling you this not to frighten you, but to give you a heads up to monitor the insomnia carefully. If it doesn't start to resolve on its own in a timely fashion or if it starts to get WORSE in any way, you should report it to the sleep doctor's office---and be specific and tell them exactly how the insomnia got started and why it continues to be a problem.

The first important step is to try to keep the insomnia from becoming a significant issue in its own right, however. Read up on sleep hygiene (Two decent copies of the standard rules can be found at: http://www.umm.edu/sleep/sleep_hyg.htm and http://www.sleepeducation.com/Hygiene.aspx . Remember that you need to consciously work on training your mind to associate CPAP and masking up = Time to go to sleep. But right now your brain seems to be associating CPAP and masking up = Be wake and worry about CPAP-stuff since you write:

I am constantly waking up, except now, it is even harder for me to get back to sleep because I am worried that the mask isn't on properly or I will break the air hose or any number of other things related to the CPAP machine
...
I know that having something on my face and straps around my head doesn't allow my body to feel like it wants to sleep.

Now it's hard to keep your mind from starting down this path when you're in bed trying to get to sleep. I know: Your post sounds in many ways like some of my early posts. But some things to keep in mind to help set your mind at ease:

1) Don't get too worried about mask leaks and whether the mask is on properly just yet. If there is evidence of really bad leaks then, yeah, you have to figure out what to do about them. But if the mask is not leaking when you lie down in bed and get comfortable, then don't worry about it suddenly getting dislodged. Such things do happen, but the fix is simple: If you wake up and the mask is not where it is supposed to be or if you notice a leak, you just fix the mask and go back to sleep. You don't need to analyze why it happened or how to prevent it in the future during the middle of the night. And the masks are designed with exhaust vents and anti-asphyxiation valves (for FFM at least) so that you don't need to worry about rebreathing CO2.

2) The equipment is pretty robust actually. It is designed, after all, for use by people who are asleep. And the designers know that some of us move around a lot in our sleep. So as long as the CPAP machine itself is far enough away from the edge of the night table that you have put it on to make it hard or impossible to accidentally pull it off the stand, don't worry too much about the equipment itself. If the hose seems to yank on the mask too much or if you feel like you keep getting tangled up in it, do a search for hose management. There are solutions.

3) Take the time to read and re-read your mask's fitting guidelines. More people overtighten their masks than undertighten, by the way. And overtightening can lead to headaches (duh), head and neck pain (duh), general discomfort (duh), and leaking! (which is not so intuitively clear). The Swift FX nasal pillows mask I use, for example, is actually supposed to have the headgear adjusted rather loosely. I find I get the best seals when I can easily slip two or three of my (little) fingers between the top strap and my head and one finger between the backstrap and my head. Surprisingly even though the headgear slips around at night, the nasal pillows themselves maintain a good seal against my nostrils.

You also write:

When I do sleep for more than 2 hours, it is a much better and deeper sleep that before the machine.
...
I have only taken the mask off my face once in the past 5 nights.

That's great! It sounds like you're making good progress on sleeping with the mask once you are finally asleep in the first place. That's half the battle. The other half is to teach your mind and body to make that deep association of Time to go to sleep = Time to mask up and that will take some perseverance.

As for any specific tips for helping get your mind and body to associate Time to Go to Sleep = Time to mask up and CPAP, I can offer these tips:

1) Do NOT allow yourself to lie awake for hours on end with the mask on your face trying unsuccessfully to get to sleep. If you can't get to sleep (or fall back asleep) within about 30 minutes of masking, get out of bed, go into a different room and do some kind of quiet activity to take your mind off the mask for a while and to allow yourself to get sleepy enough to go back to bed.

2) When you go back to bed, put the mask back on. To make masking up a habit, try your best to not consciously fall asleep in bed without the mask on.

3) If you wake up and the mask is not on, calmly put the mask back on and go back to sleep. Don't worry about why you took the mask off in your sleep.

4) Try to get all the CPAP assembly work (and even preliminary mask fitting if possible) out of the way well in advance of bedtime while you're still learning the ropes. In my early days, merely putting the mask together and putting the hose on the machine and checking the humidifier all were enough to make my mind become more alert and less sleepy. I even had to resort to washing my face several hours before bedtime for a while because that too woke me up instead of making me sleepy.

Best of luck in your CPAP adventures ...
And here's hoping you DON'T join the CPAP & insomnia club ...

Welcome to the forum, Mark! What you've described is completely normal. It actually sounds like you're off to a pretty good start. Good for you!

Madalot wrote:

Big S wrote:Practice with your equipment in any available time for you. Sometimes when watching tv is good.

This is exactly what I did, probably for the first few months of my therapy. I went back to bed early, masked up and sat up watching TV for a while. This allowed me to get used to the mask and pressure, but not trying to fall asleep right away.

I think in my situation, doing this helped me a lot.

Thanks for the advice. I was watching TV before bed, while in bed, but I didn't have the mask on. I'm not sure why. I am planning on giving this a try tonight.

robysue wrote: 3) Take the time to read and re-read your mask's fitting guidelines. More people overtighten their masks than undertighten, by the way. And overtightening can lead to headaches (duh), head and neck pain (duh), general discomfort (duh), and leaking! (which is not so intuitively clear). The Swift FX nasal pillows mask I use, for example, is actually supposed to have the headgear adjusted rather loosely. I find I get the best seals when I can easily slip two or three of my (little) fingers between the top strap and my head and one finger between the backstrap and my head. Surprisingly even though the headgear slips around at night, the nasal pillows themselves maintain a good seal against my nostrils.

Thanks for all of the great advice. I chuckled when I read this one. I think I figured this out at some point during the 3 o'clock hour this morning. I was so frustrated with how tight I had made the mask that I just loosen everything until it was just snug. And it wasn't leaking, I was kind of in shock that it didn't leak. Hopefully it will help tonight.

carbonman wrote: Night after night, I begged for relief.
"Please, please...give me back my life!"
Then one morning, just after first light,
a release from the pain, the fatigue,
just ever so slight.

Now.....it's just that easy.
I put on the mask, I hit the blue light,
I have a new life.

Thanks for sharing this. It is inspiring to me. I especially liked the part the selected above.

Welcome, Mark. Things are going to get better. On the ResMed website, I read: Consider the goal of therapy. It's simple. You want to stop the effects of your sleep apnea and allow yourself to get healthy sleep. That is what I try to remember when things seem a little tough. Even if I might not be sleeping as well in the beginning, I am still stopping the effects of the sleep apnea. Every time I strap on that mask and hook up my machine, I am working to allow myself to get healthy sleep. Good luck. Post any questions you have. The people here are amazing.
Nancy