Very discouraged newbie

I know lots of people have these problems. Got diagnosed with moderately severe sleep apnea late June 2017. Started CPAP on July 25, 2017. So it's only been 4 nights of use, but I am absolutely miserable. I wasn't sleeping well before cpap (obviously), but cpap is making me more tired than ever. I am trying to be completely compliant. Maybe that's my problem. Instead of wearing it all night, maybe I should be easing into this. Honestly, I was worried I'd be claustrophobic (full face mask) but I really don't mind wearing the mask. I fall asleep at start of night pretty well, but wake up a ton during the night. One problem is that my mask starts to leak when the pressure goes higher. I have to fix the leak several times during the night. Last night I had several dreams where something happened in the dream that was startling and I woke up holding my breath. This happened WITH the mask.
My machine says my mask fit has been 100% every night, even though I have to keep fixing it. And so far my AHIs have been 2, 6.4, 1.5, and 5.4. So my data is really good, but I feel so awful. Like how will I make it through the day, I'd say I feel worse today than most pre cpap days. The night before was much better, although I wouldn't call any night "good". More like, bad, bad, ok, and terrible. So, my questions are:
Should I ease in and work up to a full night, rather than making myself do a full night every night?
Should I talk to sleep tech about mask fit?
Sometimes I feel like maybe they messed up and I don't even have sleep apnea and this is just some cruel trick! Did anyone else feel this way at the start?
I feel like quitting!

Thanks for any help. I'm not the quitting type, but I just feel completely non-functional every day and I'm sick of it.
My equipment:
Philips Dream Station Auto Cpap
ResMed AirTouch F20 full face mask
My AHI at sleep study was 20
Pressure setting is range 5-15.

I

Oh my gosh, you sound like I did at the start of my CPAP therapy. Felt like I was getting less sleep than before, but I was determined to stick with it. So glad I did. More experienced members here can give you pointers on how to make it work better for you. Hang in there!

How high is your pressure going?
At what pressure are you fitting the mask initially? If you are fitting it at 5 cm and it goes to 10 or more...you probably need to fit it at the higher pressures to better prevent the leaks.
Seals that work well at 5 don't work so great if there is a rather large change in pressure.

Consider a mask liner (you can make your own or buy one ready made). It helps a lot of people to reduce the number of awakenings because of mask leaks.

Not sure how to tell how high the pressure has gone. It's says 6.1 for 90% pressure for last night. Does that mean for 90% of the night the average was 6.1?
Great point about setting the pressure! I am using the ramp feature and it starts at 5. I've been using it frequently during the night as well, like when I lie there unable to go to sleep, I hit ramp and it makes it easier to fall back asleep. What you said makes sense as to why it's not sealing at a higher pressure.
Do you more experienced people use the ramp?

Rainmom17 wrote:I know lots of people have these problems. Got diagnosed with moderately severe sleep apnea late June 2017. Started CPAP on July 25, 2017. So it's only been 4 nights of use, but I am absolutely miserable. I wasn't sleeping well before cpap (obviously), but cpap is making me more tired than ever. I am trying to be completely compliant. Maybe that's my problem. Instead of wearing it all night, maybe I should be easing into this.

Personally I think trying to "ease" into CPAP doesn't make it any easier. Some of your problems with sleeping through the night are that the unconscious of your brain has spent many years being hypervigilant so that it can arouse you just enough to restart the breathing when the apneas happen. It can take some time for the unconscious part of your brain to develop an understanding that this new thing on your face is a friendly alien rather than a hostile monster and that the respiratory stuff disappears when you sleep with the alien on your nose. In other words, it can take a while to retrain your brain to not be hypervigilant while you are sleeping.

Once your unconscious sorts out that it is ok to fully relax during the night, you should start sleeping better. But that means you have to not continue to encourage the brain to be hypervigilant---and sleeping without the mask part of the night means the unconscious part of the brain can't safely stop being hypervigilant.

Honestly, I was worried I'd be claustrophobic (full face mask) but I really don't mind wearing the mask. I fall asleep at start of night pretty well, but wake up a ton during the night. One problem is that my mask starts to leak when the pressure goes higher. I have to fix the leak several times during the night.

This gets easier with practice. What I mean by that is you will eventually be able to do minor mask adjustments in your sleep. But it may help to also review the fitting instructions on your mask carefully. Be sure to fit the mask when you are lying down, and be sure to not over tighten the straps---that is a very common cause of mask leaks. And you may find using a mask liner helps.

Last night I had several dreams where something happened in the dream that was startling and I woke up holding my breath. This happened WITH the mask.

Like many new cpapers, you (and that stubborn unconscious part of your mind) are far more focused on your breathing than you've ever been before. Chances are the momentary "holding your breath" was not an obstructive apnea---in an OA you are trying to breathe, but no air can get through the blocked airway. That's very different than just "holding your breath".

Lots of new papers have some pretty wild (and startling) dreams---particularly if their untreated OSA is much worse in REM sleep, which is very common. Because the OSA can be so much worse in REM, some people's bodies adapt to their untreated OSA by literally avoiding REM sleep as much as possible, which plays havoc with how rested you feel the next day of course.

When you wake up, just make sure the mask vents are not blocked and try to go back to sleep as quickly as you can. If the pressure is bothering you, turn the machine off and back on---that will reset the pressure back to your minimum pressure setting. If you want to track the wakes for some reason, turning the machine off and back on gives you a way to do that without the need to look at a clock. (Looking at the clock will make those wakes last longer, which is counter productive.)

My machine says my mask fit has been 100% every night, even though I have to keep fixing it.

Sounds like you are using the MyAir site or your machine's LCD to track your data. For better quality help in trouble shooting your issues, I would recommend that you get SleepyHead and start looking at some of the daily detailed data. We'll be happy to help you learn how to read it and use it to tweak your machine's settings to improve your overall therapy and sleep.

As for the mask fit numbers: That's only going to be less than 100% if your machine detects official Large Leaks. It's possible (as you've discovered) to have a lot of little, but very annoying leaks that don't reach Large Leak territory and hence don't show up in the mask fit numbers.

Help us help you: Can you tell where the leaks are coming from? The top of the mask? The bottom? The sides? Is it random?

And so far my AHIs have been 2, 6.4, 1.5, and 5.4. So my data is really good, but I feel so awful. Like how will I make it through the day, I'd say I feel worse today than most pre cpap days.

As someone who had a horrible adjustment period, I understand what you are going through. It will get better---if you persist and work at it. But it could take some time.

The night before was much better, although I wouldn't call any night "good". More like, bad, bad, ok, and terrible.

That's better than my first four nights, which were: Awful, Awful, Worst night I every had in my life, Awful, ....

So, my questions are:
Should I ease in and work up to a full night, rather than making myself do a full night every night?

As I wrote earlier, I don't think trying to sleep with the mask only part of the night is going to work very well. You may well wind up stating to watch the clock and say to yourself, "Can I take this awful thing off yet?" rather than finding that you use it a bit more each night. As long as your unconscious has to remain hypervigilant to watch for apneas part of the night, it's not going to get to where it thinks it can relax that hypervigilance when you have the mask on.

Should I talk to sleep tech about mask fit?

Perhaps. But if you can describe where you are detecting the leaks and post that here, you may get more useful ideas on how to deal with the leaks from forum members. Sleep techs who are not PAPers have very little understanding of how to actually fit a mask so that it is comfortable and does not leak. Experienced PAPers do.

Sometimes I feel like maybe they messed up and I don't even have sleep apnea and this is just some cruel trick! Did anyone else feel this way at the start?

Felt that way the whole first year I was PAPing. I was diagnosed just after my 52 birthday, and it was the first chronic medical condition that either my husband or I was diagnosed with. I had a whole lot of pity-parties that year---in part because I'm a 5'1" female who weighs about 110 pounds. Not exactly the stereotype of who's supposed to have OSA.

I feel like quitting!

I felt like quitting almost every single night for the first 6 months. But in the end, I made the decision every single night that I wouldn't quit that particular night. Take it one night at a time.

Thanks for any help. I'm not the quitting type, but I just feel completely non-functional every day and I'm sick of it.

It will get better. I wish I could tell you a time frame, but I'm too honest to do that. But it will get better.

My equipment:
Philips Dream Station Auto Cpap
ResMed AirTouch F20 full face mask
My AHI at sleep study was 20
Pressure setting is range 5-15.

Final comment: There are going to be people who will tell you to immediately bump that minimum pressure up to 6 or 7 because "nobody can breathe" at 5cm. But it's more complex than that. Many people do feel like there is not enough air to comfortably inhale when the minimum pressure is as low as 5cm. If that describes you, then bumping the minimum pressure up to 6 or 7 will increase your comfort when you are trying to get to sleep. But some people find that they can't exhale comfortably, even at 5cm. And if that describes you, then bumping the minimum pressure up to 6 or 7 is going to make things worse, not better.

Rainmom17 wrote:ISometimes I feel like maybe they messed up and this is just some cruel trick!
Did anyone else feel this way at the start?
I feel like quitting!

...gott'a love the cruel trick excuse....

carbonman wrote:
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,
in fact 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.

Edited to correct an extremely embarrassing typo.

Rainmom17 wrote:Not sure how to tell how high the pressure has gone. It's says 6.1 for 90% pressure for last night. Does that mean for 90% of the night the average was 6.1?

That means that your pressure was AT or BELOW 6.1cm for 90% of the night. It also means that your pressure was ABOVE 6.1cm for no more than 10% of the night. (The editing change is in italic bold. Thanks to Pugsy for letting me know about it.)

Great point about setting the pressure! I am using the ramp feature and it starts at 5.

What is your MINIMUM pressure setting rather than your starting ramp pressure? Or did they set the machine up in CPAP mode at 15cm with a ramp that starts at 5cm?

I've been using it frequently during the night as well, like when I lie there unable to go to sleep, I hit ramp and it makes it easier to fall back asleep. What you said makes sense as to why it's not sealing at a higher pressure. Do you more experienced people use the ramp?

Most experienced PAPers don't use the ramp.

But I'm a wimp who has been PAPing for almost 7 years and I do use a ramp now that I've had to increase my minimum EPAP from 4cm to 5.5cm. (This makes me a real WIMP when it comes to pressure, by the way.)

Some important questions about the ramp:

Is your ramp set to Smart Ramp? (If not, it should be)

What is the ramp time set to?

The Smart Ramp setting may only be visible inside the Clinical set up menu. It's an important feature that makes the ramp a much more effective tool for getting used to CPAP. Basically it means that the pressure doesn't immediately start to increase as soon as the machine is on, but rather the machine starts to increase the pressure as soon as your breathing settles down into a pattern that looks like normal sleep breathing. PR machines also will respond to events that occur during the ramp period by increasing the pressure by 1cm immediately and then continuing to ramp up from there.

carbonman wrote:

Rainmom17 wrote:ISometimes I feel like maybe they messed up and this is just some cruel trick!
Did anyone else feel this way at the start?
I feel like quitting!

...gott'a love the cruel trick excuse....

carbonman wrote:
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,
in fact 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.

This makes me smile. I remember you posting something similar when I was having one of my own pity-parties back in 2010. It helped get through some pretty dark times.

Actually I think the majority stopped using the ramp within wks of starting Cpap - I wouldn't even know how to set it up again now if I wanted to!

Thanks for the encouragement to all who've replied. It definitely helps! You know when you're more than ready to feel even just a tiny bit better, it's hard to be patient!
Regarding the ramp: it's set at 4. I love it - the breathing feels so easy. I've got it set for 10 minutes. Then the pressure settings of the machine are 5-15. Is it weird they set my ramp lower than that? Any advice on my ramp settings?

Robysue, you asked about the leaks. When it starts leaking, it can come from anywhere-top, bottom, either side. I try adjusting it on my face, but then even moving my head a fraction makes it leak again. So I turn off the machine, pull the mask away from my face, let it drop back on to my face, and restart machine with the ramp. It works, but it happens way too often so my sleep is very disrupted.

Setting a ramp of 4 to go ... all the way up to a pressure of 5 seems kinda pointless to me, however quickly it happens, and 5 is so low I'd imagine you'd never miss the ramp anyway - at least try going 'cold turkey' without it to see if you feel a difference.

Rainmom17 wrote:When it starts leaking, it can come from anywhere-top, bottom, either side. I try adjusting it on my face, but then even moving my head a fraction makes it leak again. So I turn off the machine, pull the mask away from my face, let it drop back on to my face, and restart machine with the ramp. It works, but it happens way too often so my sleep is very disrupted.

As the pressure increases it stretches the straps which in turn causes the leaks.

Solution - head for bed 30 min. early, then set cpap to your max pressure you will use then adjust your straps as you lay down in your sleeping position.

Rainmom17 wrote:Robysue, you asked about the leaks. When it starts leaking, it can come from anywhere-top, bottom, either side. I try adjusting it on my face, but then even moving my head a fraction makes it leak again. So I turn off the machine, pull the mask away from my face, let it drop back on to my face, and restart machine with the ramp. It works, but it happens way too often so my sleep is very disrupted.

These sound like leaks cause by the pressure increasing after you fit the mask at low pressure.

You may need to find a way to fit the mask at full pressure. But I think I'd try a mask liner first, as well as reviewing the correct fitting procedure for your mask.

robysue wrote:This makes me smile.
It helped get through some pretty dark times.

I'll see you on the road.

Just downloaded Sleepyhead. So glad I did. Sure gives MUCH more info than the app I got on my phone. It also validated how I feel - it was super clear that the night before last I slept pretty ok-ish but last night was pretty crappy. So I know it's not just my imagination that I felt like hell when I woke up this morning!

I think one thing I'm having a hard time with is that I never saw or went over any data from my doctor. They sent me a message that I have sleep apnea with an AHI of 20. And that was about it. Seeing the Sleepyhead data makes my apnea and subsequent exhaustion much more real to me, because there it is in black and white (and various other colors).