CPAPtalk.com

lullaby wrote:I've been on CPAP about 4 months now. My experience - I've been compliant throughout and have low ahi most nights however i suffer constant mask leaks, puffy eyes every morning, strap marks, terrible nights sleep, feel just as bad as before CPAP, people say i'm now looking more tired than before CPAP, i've tried just about every FFM available (mouth breather). I feel like tossing it in as it seems to more trouble than it's worth.

Lullaby, please hang in there. Have you tried mask liners to cope with the leaks? How do you care for your mask... wipe it own every day, etc. Do you wash your face before retiring? There is no right answer, some people get a better seal when their faces and masks are not clean. Hah, strange but true. I do better if my mask is cleaned every day, but no face washing before retiring. Also, have you tried loosening your mask, instead of tightening it? Counter-intuitive, but sometimes that works. There are also pad-a-cheek strap covers, that help with the strap marks and make things more comfortable.

I felt and appeared more tired the first 4 months of therapy because I was not able to sleep very long without waking up due to discomfort (turned out is was a dry nose that was my problem). It took a while to get to where I am now, sleeping 5 to 6 hours straight through and waking up feeling super. My turning point, though, was at about 4 months.

I have a feeling that if you could get those leaks under control, things would improve greatly for you. I encourage you to keep posting your own topics. We're here to help and support you.

This poll on how well one is responding to CPAP has got me thinking (Guess my therapy is working after all!).

What is a good night's sleep? What should be expected from XPAP?

It's been so very long since I had consistently good nights of sleep that I'm not sure what my goal is. Currently, I wake up much much better than before going on therapy. I'm not as sleepy as before, and I haven't had a morning headache while using my APAP machine in the last four months of use. However, I don't sleep all the way through the night. Many mornings, I wake up tired despite 8.5 hours or so of sleep. I seem to hit a wall in the afternoon. And worst of all, I don't think my brain is functioning as well as ten years ago, mostly short term memory issues, but also ability to focus and some complex reasoning skills.

From the poll, I see that about 27% of the people selected Very Effective. Is that an attainable goal for everyone? I would say no, this is not. There are plenty of people in the world that don't have SA and don't sleep well. But that doesn't mean that is not possible for me.

My goal, however, unreasonable, is simply to sleep through the night and wake up refreshed every day (without drugs). I'm still a newbie and am still trying new things. My next step is BiPAP. If that doesn't help me improve, I'm not quite sure what to do after that. Probably just accept that it is as good as it will get for me and try to adapt to it. After all, I am much better than before.

Is this an unreasonable goal?

For those that voted Very Effective, what is a typical night's sleep for you? Also, was it immediate upon starting therapy, or was it lots of trial and error (masks, machines, beds, ...) as I feel I'm going through?

"For those that voted Very Effective, what is a typical night's sleep for you? Also, was it immediate upon starting therapy, or was it lots of trial and error (masks, machines, beds, ...) as I feel I'm going through?

I'll take a quick stab using my particular case - My first month and half was so up and down and I attribute the mess to finding the right mask for myself and finally, the best bed pillow for me. Started with FFM's, moved on to chinstraps and nasal masks and finally nasal pillows (without the chinstrap) as they were more comfortable and more stable for me. I used your mask also but not too successfully. FFM's were my adventure with fighting leaks (probably the shape of my face). I finally settled on the Swift LT and things improved drastically for me. Adding a Hose Buddy to allow routing the supply hose over my head made my side sleeping easier with less upset of the nasal pillows and my sleep. Finally, after trying several different regular type bed pillows, then moving on to one of the popular husk pillows, I finally got the one that works best for me - the contour pillow. In summary, I spent big bucks with all these changes and the only useful assistance I got was right here on this board.

I especially hold two board members in highest esteem - "Pugsy" was always there to help with her knowledge of the process and "Emilia" who is expert on my machine (same as hers). Without their help (and others) I might still be in a mess similar to my first month and half.

Lastly. my night's sleep lasts between 6 and 7 hours - closer to 6. To me that's good as I never slept over 7 hours all my life. I am back to feeling as good as I have at any point in my life. However, I did not regain my youth, naturally, but nobody is in older years as they were in their teens or childhood.

I wish you even better luck than I had.

ameriken wrote:
Hey Kody, wow is right. I'm intrigued that you're experiencing the same issues, we're both the same age and have the same machine. What is the cause of your breathing problems? They tell me that my use of methadone for severe back pain is contributing to the breathing issues as I have mostly centrals and 'hypoventilation' and little or no obstructives. I'm just curious what is at the root of your own issues.

I went in with moderate Sleep Apnea, AHI of 30 and they said it was all obstructives no centrals. Then they started me on CPAP, for a month. I hated it, felt like I couldn't breath right at all, and turned out that was causing Centrals when they increased the pressure to get rid of the obstructives. That is when they said I had Complex Sleep Apnea, and got me on the ASV machine. I did like it right off the bat much better because it felt a lot more natural to breath with, and didn't have the suffocating feel to it. Other than what I told you, that is all I know so far. They are still trying to figure out why I don't feel all that great still with the headaches and the hung over feeling a lot of the times. They don't tell you too much because their always in a big rush, so I have learned MUCH more about all this from the board here which I am very grateful for. Ameriken, I would check out your pillow situation, as so far that has been the biggest help for me to lower my AHI levels, I think it's allowing my airway to open more.

I chose option 1., because compared with my sleep study results (AHI 23.5 - not awfully high), my nightly stats with CPAP have always been less than 1.0. I also sleep through the night without waking - this never happened before CPAP.

I still feel tired by mid-afternoon, but the numbers tell me my therapy is very successful so I plod on waiting for that "OMG I FEEL AWESOME" day.

Cheers,
xenablue

Kody wrote:

ameriken wrote:
Hey Kody, wow is right. I'm intrigued that you're experiencing the same issues, we're both the same age and have the same machine. What is the cause of your breathing problems? They tell me that my use of methadone for severe back pain is contributing to the breathing issues as I have mostly centrals and 'hypoventilation' and little or no obstructives. I'm just curious what is at the root of your own issues.

I went in with moderate Sleep Apnea, AHI of 30 and they said it was all obstructives no centrals. Then they started me on CPAP, for a month. I hated it, felt like I couldn't breath right at all, and turned out that was causing Centrals when they increased the pressure to get rid of the obstructives. That is when they said I had Complex Sleep Apnea, and got me on the ASV machine. I did like it right off the bat much better because it felt a lot more natural to breath with, and didn't have the suffocating feel to it. Other than what I told you, that is all I know so far. They are still trying to figure out why I don't feel all that great still with the headaches and the hung over feeling a lot of the times. They don't tell you too much because their always in a big rush, so I have learned MUCH more about all this from the board here which I am very grateful for. Ameriken, I would check out your pillow situation, as so far that has been the biggest help for me to lower my AHI levels, I think it's allowing my airway to open more.

I do have a memory foam pillow, plus I've also tried a contoured pillow and a buckwheat pillow. I was titrated on CPAP but it did nothing because I had almost all centrals. Since my apneas are central, I don't think the pillow is contributing much toward my apneas, however the wrong pillow can make sleep more difficult and cause problems with the mask and leaks. Anyhow, these are great machines and they definitely are more natural to breathe with, I just hope we can figure out how to get past these issues. If I figure something out, I'll post it.

I'm new here, and new to APAP as well. Just diagnosed and have been using my machine for one month, every night. It's made an incredible difference in my life. Still having some trouble getting the mask(s) not to leak when the pressure kicks up but I'm sure that comes with time! LOVE the SleepyHead software for Mac - really pleased to find it!

I voted for number one....I am 100% compliant and feel sooooo much better. I still have aches and pains and it takes me a while longer to get myself together in the morning...but hells bells I'll be 69 in a few weeks, age is definately a factor

I had no idea I could feel this good at my age!

I paused a moment before choosing my answer. It had been so long since I felt normal that I wasn't sure what it was. After 3 weeks on my CPAP, I feel better than I have in years. I'm not getting overwhelmed by small things. I'm cheerful and vocal. I am keeping up on housework and doing better on the job. I was astonished two nights ago to discover that I could actually do something in the evening besides sitting zombified until bedtime. I don't dread the weekly den meeting for my cub scouts. I don't spend the weekend trying to catch up on sleep. WOW is all I can say.

I chose number 4. I don't know how I can have a night like last night, asleep most of 9 hours, AHI of 0.3, no mask leaks, and still tired. Yesterday my AHI for the night was 0.0. And I still felt tired and had sleep attacks during the day. It's only every now and then I have a good sleep and wake up feeling refreshed and feel good the entire day. I think the CPAP helps, but other health problems and sleep disorders have cheated me out of it really restoring my life to what it should be.

I chose #8, as I'm only 3 days into therapy. I'm not waking up as much as before and I'm sleeping longer. But I'm actually feeling worse. I think it may take a bit of time for my body to adjst to this strange new thing - restorative sleep. What I have seen is improvement in my numbers. This was my first night.



The number of occurances is dropping each day. I'm still waiting for that magical day, when I can actually *feel* better. Was there some form for scheduling the start of recovery that I was supposed to fill out and forgot?

Well its been about a month since I started CPAP therapy and have been compliant every night. Luckily compared to what others have said here I think I am doing well. I have had a few issues with nasal irritation, itchiness, sneezing...but a nightly dose of Benadryl seems to keep it from happening. Some days I still feel a little tired but mostly have alot of energy and no longer fall asleep when talking with someone. I dont even feel tired after lunch . Can't imagine I would feel as good but could be better I suppose thats why I chose somewhat effective.

Here is last nights report:
http://s1217.photobucket.com/albums/dd3 ... 8-2011.jpg

Prior to CPAP AHI: 21.9, now <2.5 average. Using the Swift FX, not sure if i still mouth breathe but i feel the pressure makes me keep my mouth closed? Appears this is a problem for many people. If I mouth breathe does this show up as a leak?

It's very effective. I used to be awaken many times during the night by my wife grunting or poking me because my freight train like snoring was bothering her. Now I can sleep all night long without her disturbing me.