Newbie,thinking of giving up

[Sleepybaby]

Started to use CPAP in May,2009,and now 7 months have passed.Still cannot get used to it.Especially these nights,felt very depressed and frustrated to think about putting a mask on my nose.Really miss the days without mask and CPAP,although no good sleep at all.Without mask,feel easy,confortable,sleep at any sides and positions,talk and hug with honey before falling to sleep.These are before sleep.And the worst thing is during the sleep period,like 6-7 hours sleep,I always woke up 3-4 times during the time,waking depressed,restart the machine to make the noise lower,and go to sleep again.After a night sleep in the morning,I am not refreshed as supposed to be.Should I quit?

Why I woke up every night 3-4 times?Is that why I am not refreshed in the morning after sleep??
Most of the time,I can fall asleep easily,but surely wake up every 1.5 to 2 hours,making 3-4 times in a 6-7 hours sleep.I do not know why I woke up.I searched here and did the following things:

1,Close my mouth.Now,I think I am crazy.I just used the sticker to cover my mouth.Sure no leak from my mouth then,because still sticked stably when I woke up.Of course,no improvement for wakeups.
2,Medical pills to let me sleep better.No use.Still woke up 2 times during the night,and serious headache the next day.
3,Hot milk does not help also.
4,Pressure adjusted to be from 6 to 15 one time,and many other times to change the pressure also.Not not any good for the wakeups.

After wakeups,the only difference is that the mask was noisier than I started to sleep.But I think the noise is not that big.In order to fall asleep again,most of the time,I had to restart the machine.And sometimes not,but only let it go.

Except the above,now is winter time in our city,a lot of rainouts in the mask.sometimes,I was choked by water inside my noses,and sometimes air leaks resulted in water coming out of the mask.Then I woke up for sure.It was really depressed and bad.My life is now in such a mess.My husband does not pity me as before,but sometimes say something not good.Too much sleep in the working time.Don't want to go out for fun or for exercises.I also lost my baby recently.I really need to cheer up,but don't know what should I do.Can anybody help?

[kidzsleep71]

Hi Sleepybaby,
Before you give up please consider a few things that may be happening. Your mask may be too large and may be leaking - the leak may be waking you up. The machine pressure may be too high for you which is causing you to wake up. You may have a mask that doesn't fit your face well and it's too uncomfortable for you. Do you know your pressure? What mask are you using? How bad is your sleep apnea?
If it is one of these issues, it can be fixed. I am a registered sleep tech (been doing this for 7 years) and know that there can be many reasons this may not work for you. I encourage you to call the sleep lab where you had your study (or your DME company but will probably get more help from the sleep lab) and discuss this with them. If it is a reputable sleep lab they will be more than willing to help. They may have you come in for a mask fitting - they may try numerous masks on you and see what fits best. Speak to your dr about lowering the pressure on your machine for a while to see if you respond any better. CPAP does work but only when the equipment is working with you and not against you!
Good luck with it

[shambharwani]

Hi Sleepybaby,

I am a newdie too, and I know how frustrating it can be to adjust to CPAP, masks leaks and sleepless nites etc. I am just about getting comfortable solving most of those issues and maybe you could use some of my experience in helping to get adjusted.

1. Make sure there are no (or minimum) leaks from the mask. Even small momentary leaks around the eyes or cheeks can wake you up.

2. Use the A-Flex feature on your machine.

3. Try to reduce the pressure difference (between Min and Max pressure) or use your machine in CPAP mode (set to your optimum pressure) and use the ramp feature to fall asleep (and you can also activate it should you wakeup during the night).

4. Lower the setting of the humidifier and if you do not get a dry/sore throat maybe you don't even need the humidifier.

It takes time to find the right combination but once you get it right, you'll see/feel the difference. Don't give up its probably saving your life.

Sham

[Julie]

I think they are on the right track, but suggest you raise your minimum pressure to maybe 8 because 6 is quite hard to breathe at for some people, even if you have an Apap, and then lower the top (15) pressure to 12. I also wonder if you haven't fallen into a depression after having lost the baby, but not been looked at for that possible diagnosis. It can mess up a person's sleep apart from anything else. I also think it might be a good idea to turn down the humidifier if you have rain-out. The humidifier is not 'therapeutic', and some people don't use it at all, so how you use it is up to you.

[KatieW]

I'm so sorry for the loss of your baby. I'm not a therapist, but just speaking woman to woman, it seems to me that such a loss affects all areas of your life including sleep, and maybe you need help to deal with this. Do yo have a family doctor, or are there resources in your community?

You have listed multiple problems with your cpap, which sounds overwhelming, but take one at a time, there is a solution for each of them. I'm glad you posted, because that means you're not quite ready to give up yet. You'll find lots of helpful suggestions and support here.

[Muse-Inc]

Don't give up! You've got a great machine, now it's matter of figuring out what's not working right. Your mask seems to be a problem, it's either not the right mask for your particular face or not fit properly (the RT kidzsleep71 gave you some great suggestions). Rainout likely comes from your humidifier being set too high, try reducing it; in summer, I use passover (heat off, water in humidifier tub) but in cooler weather, I need it set higher to deal with my 30+ yrs of allergies-sinus-congestion issues. If you tackle each one of these problems at a time, you'll soon be getting the benefits of CPAP therapy as KatyW said. I'm glad you discovered this forum, there's great help here from those of us who've been challenged to make this therapy work well...somebody's bound to have experienced what you are going thru and might be able to make suggestions that work for you. Hubby no support? Not surprising -- most people who aren't a hosehead can't really appreciate the challenges we face.

I too am sorry for your loss; that's just gotta be about the most difficult thing for a parent to deal with. The stress of that alone would interfer with anyone's sleep.

Welcome aboard!

[roster]

Started to use CPAP in May,2009,and now 7 months have passed.

The most basic thing you need to do is look daily at the data your machine provides. It will tell you the number of apneas, hypopneas and snores you have each night and what the average mask leak is.

It could well be that your therapy is not effective in which case you should expect to awaken often and feel like crap.

You apparently don't have the software and card reader, but there is daily data available from the screen on the machine. You can access it through the clinician's menu. If you don't know how to do that, tell us and someone will post a link to instructions.

Access the data everyday and put the key numbers in a log so you can track how they change.

I hope to hear from you again soon.

[tattooyu]

Definitely don't give up! If it wasn't for my machine, this board and my persistence, I would probably have been dead in my 40s or 50s (I'm 36 now). The little comforts you lose by having a mask on are nothing compared to that which you gain, which is your life. Literally.

We lost our baby son, Andrew, last year and I can't imagine what the stress would have done to me if I hadn't gotten on therapy this year. Believe me, I know what you are going through.

It's possible that all these months, you've been fighting without the guidance of the people on this board. Once you've joined here, think of it as starting anew. You can do it, and you will thank yourself once you get it. Your husband will, too.

[Gerryk]

Don't give up. Talk to your doc and your DME if they are cooperative. Also find a support group nearby and go to their meetings. I had many many problems and I am finally sleeping well again. I don't believe I have slept this well in over twenty years. This is not an easy change for you just like it wasn't easy for me or many others. We need to learn how to sleep again but now sleep with all this stuff hooked up and running and making noise. Before you know it you will be sleeping through the night. Don't let the equipment make you nervous! Just ask questions about problems you are having and again talk to your doctor your DME and go to a support group if their is one in your area. This board is a great place to start and grow and then help others.

Good luck and don't give up. I was a quitter and now a believer who is being successfully treated.

Best of luck

Gerry

[DoriC]

You've gotten excellent advice here about adjusting your cpap therapy so please come back here often and ask lots of questions and you'll get lots of guidance. I am so sorry for your loss and I'm sure this has impacted you and your husband's lives as well and your cpap therapy. I know Tattooyu can be a great source of comfort for you and your husband and possibly lead you in the right direction. Keep us updated. Dori

[tattooyu]

Sleepybaby, I sent you a PM.

[John O]

I feel the same way sometimes, especially when I don't seem to be getting the benefits of cpap during the day. It is true that I don't have the means to read the data myself, but I am sure the machine is working. I have a follow up appointment with the Sleep Center at the Corvallis Clinic on Tuesday. With me it is a matter of consistancy in setting up the pillows mask everynight. Obviously, your situation is most likely different than mine.

[kteague]

Another one time quitter here, now over 3 years into successful cpap treatment. Hopefully you are encouraged by the expressions of concern and confidence that there are things that can be done to help your cpap situation. It saddens me to hear that you have had to cope with such a tender loss, even while struggling with poor sleep, which alone is enough to stress our emotional reserves. Do be patient with yourself, knowing you have been dealt a double whammy and may take more time and effort to recover your emotional and physical energy for life than you or others might expect.

Wishing you the best.
Kathy

P.S. I have sent you a PM. Oh, almost forgot. The wakeups you are aware of or remember are likely just a fraction of what you actually experience.

[jweeks]

After a night sleep in the morning,I am not refreshed as supposed to be.Should I quit? My life is now in such a mess. Too much sleep in the working time.

Hi,

I am sorry to hear that you lost your baby, and that treatment hasn't been going well. What you describe sounds like your treatment is not effective for some reason or another. You need to go back to your MD and/or your sleep doctor. Untreated OSA can cause depression, and make your challenges that much worse to deal with.

You state that your life is a mess now that you are on CPAP. I'd like you to consider this...untreated OSA can lead to serious heart problems and can cause a stroke. How much bigger of a mess would your life be if you had a stroke? What you are describing is not a reason for quitting, it is a reason for redoubling your efforts. Even if you cannot do it for yourself, do it for your family. Maybe you cannot see this through the fog of OSA. You really have to take it on faith that the OSA part is treatable, and that part of your life can get better.

-john-

[shambharwani]

Except the above,now is winter time in our city,a lot of rainouts in the mask.sometimes,I was choked by water inside my noses,and sometimes air leaks resulted in water coming out of the mask.Then I woke up for sure.

I read this somewhere - not sure on this forum or in the user manual - The machine should be placed on a lower level then the bed to avoid/minimize rainouts.