I hate using CPAP yet afraid to go to bed

[mindy60]

Hi, I was dx around 2008 with sleep apnea and have tried the machine and hate it for so many reasons. I have so many other things wrong with me and the machine is just another thing to take care of. I hate that it makes my face break out. It messes up my hair. I can't sleep on my side or stomach.

Anybody else hate using the machine? I have a good one and will update my profile so it isn't the machine, it is me.

Anybody else out there afraid to go to sleep? I stay up late not wanting to go to sleep, not realizing it might be because of sleep apnea. I wake up often when I have a problem with exhaling out of my nose. (This also happened at the dentist.)

Thanks for listening,
Mindy

[zoocrewphoto]

Hi, Mindy.

Welcome to the group. The good thing is that multiple people have had the same problems and feelings as you. And there are solutions. Some may be easier than others, but the wonderful people here are happy to help you go through them. I joined 6 months ago, and I have learned so much here.

Tell us what equipment you have and give us details about the various problems you are having.

For example, you mentioned that you can't sleep on your side or stomach. I assume you would prefer to. Are you saying that you have to sleep on your back due to the machine? If so, tell us what problems you are having with this. People can help you make adjustments so that you CAN sleep on your side and stomach. You may need a different pillow, or different mask, or just a different way of setting it up. I know a lot of people think you can't sleep with a full mask on your side, but that is what I have been doing, and it doesn't bother me at all. I actually sleep on my side MORE than I used to before cpap. Sleeping on my back is LESS comfortable than before, so I tend to turn back to my side or wake up when I am on my back.

There are also some great topics at the top. Dealing with change is huge, as this really is a loss (of freedom) as we sleep. But once we get through it, we gain the freedom back during the day time. Spend some time and really check out those topics.

[nanwilson]

Mindy
I realy don't think there is one of us that love the machine....we just love that it allows us to sleep. I don't know why you can't sleep on your side or stomach, many of us do you just have to figure out how it works best. If you sleep on the edge of your pillow and hang the mask off the edge it will work, or you can get a specific pillow that is designed for the mask. I use a big fluffy pillow and sleep on my side and stomach and in the middle of the pillow, with no problem...it takes patience to figure it out. If you have the mind set that you will not use this machine...then you won't, doesn't matter how many suggestions that you get...you just won't get it. This machine is a pain in the "@###" but it keep us alive...better to use a "pain" than having a heart attack or stroke . Good luck
Nan

[Pugsy]

There are options out there. Some might work and some might not but take a look a the mask I have in my signature line.
I sleep on my side...on my stomach..on my back...any way I want to sleep. The Bella Loops go around the ears...nothing to mess my hair up except normal bed pillow stuff. While that isn't the reason I use them...it's a nice bonus.
Wearing a mask (even a full face mask) doesn't mean a person just has to stay on their back.

Welcome to the forum. I don't hate the machine or mask. I would rather not have to use it but the alternative is more of a problem than using the mask and machine. We all have choices.. There are things that you can do or try to make the choice of using the mask and machine more palatable.

[xenablue]

I don't hate using CPAP, but I don't love it either - it is what it is and means there's much less chance of me dying in my sleep, as well as avoiding many nasty complications of untreated OSA.

I firmly believe that success with XPAP begins with your attitude, then perseverence, then patience. If you can't get past the hate and negativity, then no matter how comfortable your mask is, you'll never succeed.

You have to WANT to make it work - don't look on XPAP as punishment. Committing yourself to succeeding can improve other health issues you may be suffering.

Very few people slap their mask on first night and go AHHHHHHHHHHHHH and sleep like a rock all night. It takes time, patience and the willingness to try different masks, read a lot here and TRY everything people here suggest until you're in a place where you feel comfortable with this therapy.

You will learn quickly, that many here have multiple health issues and many doctors - this is doable, so hang in there.

Cheers,
xena

[chunkyfrog]

The headgear really did a number on my hair at first, even breaking some off at the top.
To avoid the mess, I had it cut, then cut shorter and permed, this worked fairly well, but not with the results
I really like. Now I'm letting it grow out with a looser perm; and I can finally get it into an elastic on top of my head--
even though it looks silly--there is such a tiny wisp sticking up!
Once I get the headgear and mask on, off goes the elastic, and my headgear holds my hair up.
This keeps my head cool, along with preventing the headgear from slipping around.
The bonus is that in the morning, my hair has a little extra body. and doesn't look terrible at all.
It took me over 2 years to find a hair plan that works for me--don't give up.
You may want to try a mask liner--many like Pad-a-cheek or Rem-zzz's, or just home-made, for your skin.
After trying over 20 masks, I finally have 3 that work. Most people are not so hard to fit, thank goodness!
This is not fun; but it beats the heck out of a stroke, or pushing daisies!

[Heavylids]

Hi, I was dx around 2008 with sleep apnea and have tried the machine and hate it for so many reasons. I have so many other things wrong with me and the machine is just another thing to take care of. I hate that it makes my face break out. It messes up my hair. I can't sleep on my side or stomach.

Anybody else hate using the machine? I have a good one and will update my profile so it isn't the machine, it is me.

Anybody else out there afraid to go to sleep? I stay up late not wanting to go to sleep, not realizing it might be because of sleep apnea. I wake up often when I have a problem with exhaling out of my nose. (This also happened at the dentist.)

Thanks for listening,
Mindy

Wow..you're letting it beat youi instead of you controlling it. Messed up hair? I'msure there's a way to solve that little issue. How in the world does wearing a CPAP mask cause your face to break out? I'm sure there is a solution if it just under where the mask touches your face? Tried a mask liner?

can't sleep on your stomach or side? I am a side sleeper so I purchasd a pillow made for CPAP users. There is an intentation on the laet and right sides of the pillop for the mask to sit in. No problem sleeping on my side or occassionally on my stomach.

Don't let it beat you. Your life may depend on CPAP compliance. Like some have already said...it's not east for any of us. Some day there will be a pill!!!

[Xney]

I don't love my machine - at all. It's a pain, but it's not the machine's fault.

But I hate sleeping without it now. It does work!

[ems]

You said you hate using CPAP, yet afraid to go to bed without it.

I bet if there was a poll, 99% of us would say the same exact thing. No one loves the machine... at least I can't imagine why someone would... they love what the machine is doing for them.

It takes time to adjust to this and it's not fun by any means. You have to want this to work for you... it's not easy... I'm still working on it, but it is doable.

[Sir NoddinOff]

Hi Mindy. Welcome to the forum. I suggest you take an 8x10 sheet of paper and draw a line down the middle, top to bottom. At the top of the left column put a label: What I hate about CPAP. At the top of the right column put: What I hope it will do for me. Being as honest as you can fill out both columns. Next, think about the two lists for awhile and make a decision. Good luck with your treatment

[NJmommy]

I totally understand where you are with not wanting to sleep. I have been using a CPAP for almost 3 weeks now . I freak at the thought of an afternoon nap even though I am still suffering from exhaustion during the day .I use nasal pillows .But finding out that even after losing 90 pounds 2 years ago and being on a reduced calorie diet of 1600 calories daily I still suffer. I have recently been diagnosed with pulmonary hypertension probably due to increased pressure brought on by a blood clot I had in my lungs when pregnant 7 years ago. My doctor has found out that clot was caused by Protein S & C deficiency which went undiagnosed all my life, which can kill me . I also have venous insufficency which does not allow me to stand or walk for extended periods of time. I'm not huge im a size 12 at 200 pounds. I don't do drugs, eat red meat or dairy , don't drink alcohol or caffeine , nor soda or junk food . Now sleep or the way my body sleeps could kill me . Strapped to a machine while I sleep , praying the power does not go out during the night. The only benefit I have so far is the headaches I suffered from every morning for 3 years have stopped .

[mindy60]

Thanks y'all for the responses. I am taking notes and will make an appointment with my pulmonary specialist. I am afraid he will get mad because I have this lovely good-as-new machine I used for just a few months. But I do need help and encouragement! I just can't go on like this anymore.

And being here on these forums is already helping a great deal. I am fixing to dig out my machine and set it up again.

Thanks again,
Mindy

[chunkyfrog]

YAY!

[kteague]

Fear can be quite a motivator. I started CPAP, had some serious issues and quit, but fear of sleeping without it once I knew I was suffocating in my sleep won out over any and all issues with the machine. Some kind people on here walked me through the time of working out the problems. To this day the fear remains. I can sit up and fall asleep, but I have not laid down and gone to sleep without the machine in years. I used my fear to my advantage. Do I "like" my machine - no. But I like what it does for me. Give it a fair chance and you'll likely soon say the same.

[JohnO]

I am afraid he will get mad because I have this lovely good-as-new machine I used for just a few months.

Welcome. Regarding your comment about the good Doctor, the key issue is that unless the Doctor has actually slept with a CPAP machine, they don't understand that dealing with the mask is 75% of the battle. I think it helps if you can let the Doc know that yes, you value the machine, and what is is supposed to do for you, but the issues surrounding the machine still need attention. Sometimes a good DME can help with mask selection. Sometimes this forum is the best place to get support.

I was fortunate that my frustration with the machine only lasted a few days. Now I am on day 83. It is not a fun thing, but at least I've made peace with it, as I believe it'll help me live a longer, healthier life. It also eliminated my snoring, which my wife (or anyone who has been on the same hotel floor as me!!) enjoys quite a bit!

John