Very discouraged newbie

[Bertha deBlues]

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).

I can empathize. I got a voicemail saying, "You have sleep apnea. You're getting a CPAP machine. Someone will call you to pick it up." When I had questions, I was told to ask the DME. Getting online help and having Sleepyhead have helped tremendously.

[Rainmom177]

So, out of curiosity, how many of you felt worse before feeling better? Particularly if you were fully compliant. I'm looking for signs of hope here!

[Cardsfan]

Everybody is different. How much damage have the years of undiagnosed SA done to your body? Your recovery will be individual to you. All you can do is monitor your results, tweak your settings to optimum, and wait and see.
Me, I adjusted to cpap and was compliant from the start. After the first week, I felt an energy surge. After 2-3 months I fell much better overall. After a year, my panic attacks and heart
pounding in my sleep went away. My brain fog took 6 months to lift.
Don't expect miracles, and don't get discouraged.

Also, there were many days in there that I felt like Poop. Just keep trying. Use your machine every time you sleep.

As a sign of hope, I bet not ONE of us would give up our machines for even one night. Many of us have back up machines to make sure we don't have to go without our therapy.

[RicaLynn]

Everybody is different. How much damage have the years of undiagnosed SA done to your body? Your recovery will be individual to you. All you can do is monitor your results, tweak your settings to optimum, and wait and see.
Me, I adjusted to cpap and was compliant from the start. After the first week, I felt an energy surge. After 2-3 months I fell much better overall. After a year, my panic attacks and heart
pounding in my sleep went away. My brain fog took 6 months to lift.
Don't expect miracles, and don't get discouraged.

Also, there were many days in there that I felt like Poop. Just keep trying. Use your machine every time you sleep.

As a sign of hope, I bet not ONE of us would give up our machines for even one night. Many of us have back up machines to make sure we don't have to go without our therapy.

+100

I've been compliant from the start, and I definitely feel it when I've gone a night without -- whether it's an impromptu overnight with friends or I was just too brain fogged to mask up, I have a noticeable decrease in energy the next day. It's a rare occurrence for that reason, and I just acquired a backup machine last month to avoid it in the future.

[Janknitz]

It took me quite a while to settle down with CPAP and, yes, I felt like poop for a while. But one night I slept through the night and I woke up feeling . . .

Peaceful . . .

That was my first perception. I didn't wake up in fight or flight panic mode. I woke up calm and comfortable. And I loved that feeling. It reminded me of waking up as a young child (I still have memories from the crib!), just an easy transition from wake to sleep. That's what it must be like for "real people" who don't spend all night bathing their bloodstream in stress hormones because they can't breathe.

That feeling was addicting and I wanted to have it again, so I worked really hard on getting my CPAP so comfortable I could just put it on and go to sleep. I will admit it took me months to get there consistently, but very worth the struggle now 6+ years later.

So a few suggestions:
Read my mask fitting tips on my (outdated) blog. If you have a nasal pillow mask read "Swift FX fitting tips" and if you have a FF or nasal mask read "Taming the Mirage Quattro". It's important to understand how the air cushion works and that tightening against leaks is counterproductive. As other's have suggested, you do have to put in your highest pressure to fit the mask--it may be (someone else may know) that you have a "mask fit" feature (not sure what it's called on your machine) that will temporarily put your pressure at the highest number specifically for fitting the mask. But it sounds like you have a wide-open pressure and never reach the 20 where it's set, so you might want to narrow your range before you do this. You can post data from a few nights and some of our experts can advise you about what might work as a range of pressures for you.

Don't be frustrated if you don't sleep through the night at first. Just try to get more and more hours in a row. It does take time to get used to sleeping with a chunk of plastic strapped to your face.

Most of us turned off the ramp right away, because very low pressures (4 or 5) can make you feel like you are suffocating.

While you should continue to use the machine all night, every night, you can "practice" during the day while you read or listen to some music--without the pressure of trying to sleep with it. Let the goal be simply to be more comfortable with the mask and the pressure.

Hang in there--hoping that a peaceful wakening will soon be yours.

[zorki1c]

I really didn't want to use a machine -- didn't think I could get use to it -- but the Sleep Doc said a mouthpiece probably wouldn't work for me. Fortunately I can use pillows, not a face mask. At first I had some rocky nights but eventually settled in. Now, firing up my gear at bedtime takes me to my "safe place". Have trouble sleeping without it. Even took mine on A river cruises in Russia and Europe and when we go camping in our fifth wheel. A lot of it is attitude. It you fight it, it won't work. Recently picked up a used machine to replace my mates 10-year-old model. The "new" CPAP had less than 200 hours on it. That probably means the user gave up.

[Okie bipap]

After my wife saw me with my equipment on, she said she could never sleep with that much stuff on her. Once she tried it, she has had no problems at all with the therapy. She just masks up and goes right to sleep.

[D.H.]

To the OP:

I'm glad that you're using Sleepyhead. This conversation is rather long, so forgive me if I missed anything. I see that you felt a little better one day and lousy the next. I also see that the stats seem to agree with how you feel. Note that a 90% of 6.1 means that your pressure was 6.1 or lower 90% of the night.

Just stick with it, make whatever adjustments are needed, and you will feel better soon. If the relief is gradual, you might not really notice it, but it's there. Once you realize how much better you feel, just pretend it happened all at once. Also, unless you're uncomfortable without it, ditch the ramp!

[Doublev]

May I suggest trying different masks? I had trouble until I found masks that started to work for me. I have bought many masks in the last few months...masks that did not work at all at first (nasal pillow) are all I use now. I started with full face, learned to breathe through my nose (nasal),and went to nasal pillows. The first time I used a nasal I kept finding my mouth open and dry. The first time I used a nasal pillow I had a bad apnea event because I felt I couldnt breathe. The mask makes all the difference and is the most important factor when it comes to comfort. Now I look forward to sleep and using the machine.

[KennethB]

I recently got a new Dreamstation and after changing the flex setting from 1, I started having problems with machine waking me up with a surge of air flow, causing air to blow my nasal mask away from my face. I changed the flex setting back to 1, which is the lowest pressure relief setting for exhaling and the problem totally went away. Now I have mask fitting of 100%, with no or very little leaks detected.

[mper!?]

Just downloaded Sleepyhead. So glad I did. Sure gives MUCH more info than the app I got on my phone...

Hi,

_ I would encourage you don't give up. Maybe so many basic things to go through yet, in my modest opinion;

_ You have just taken the first step on getting proper data. Very curious to see them;

all the best, good luck, and support for you keep going