Newbie VERY disappointed in CPAP

[fuhrtops]

I've been on CPAP since Monday and I feel I'm sleeping worse than when I started. I still wake up several times, don't dream, and now I'm sleepy in the morning when I do get up. Anybody out there who can assure me that it will get better. Please. Thank you.

[Bawstin]

I also felt that way in the beginning. I'm a newbie here also Hang in there it does get better.
It has been about four months for me and I'm feeling better~no more afternoon naps
Good luck & stay at it!

[dave21]

First thing to say is it does take time. Depending on how long you've been suffering with not enough oxygen whilst sleeping, you may have 3 or 4 months of sleep debt to pay back for your system to rejuvenate. If you don't get enough oxygen at night, your organs don't rejuvenate as much as they should.

Some people find they feel better after a week and less tired, some can take much longer to several months or even 4-5 months. It really depends on your sleet debt that you've accrued and how your body is deprived of sleep in general.

Hang in there, it'll get better!

Thanks
Dave

[DreamStalker]

First of all ... don't trust your DME or sleep RT to make this treatment work.

YOU have to educate yourself on the treatment ... think of it like diabetes. A diabetic patient is the only person who can effectively monitor and manage their own therapy ... same goes for OSA patients. Every OSA patient needs a custom-fit treatment system and the patient is the one who customizes it.

This forum is the best place to educate yourself on your treatment ... read read read and ask lots of questions.

Finally as has been noted ... patience is golden ... the mask is the key stone ... life is worth living with the highest quality of health.

Good luck!

[Tielman]

I've been on CPAP since Monday and I feel I'm sleeping worse than when I started. I still wake up several times, don't dream, and now I'm sleepy in the morning when I do get up. Anybody out there who can assure me that it will get better. Please. Thank you.

Stay at it, it WILL get better.

I'm about 6 months into CPAP, and for me the 2nd and 3rd months were great. Here are some of the issues I've run into (not all are resolved):
- Mask Leaking (important to get under control)
- Skin issues (blisters, bleeding on the nose)
- Hose Management (need to get one!)
- Possible Silent GERD
- Traveling w/CPAP (not too much trouble, but you'll learn shortcuts/tips w/time)
- Power event issues (so far, not a big issue)
- Mouth Breathing w/Nasal or Pillow masks
- AHI Numbers

Just keep with it, you'll get it all figured out and become a pro. A couple of questions:
- How are your AHI numbers so far (below 5?)
- How are your leaks (0 for major leaks?)

Getting those two things right can help a LOT.

Good luck.

[CinnyAnn]

Hi,
I'm also a newbie to CPAP. 9 days/nights in to it. I joined the community just a few hours ago. I received a couple of responses that is very encouraging. I will not give up on this b/c as you know your life depends on it. It is just comforting to know that you are not alone. I, too, have a hard time falling asleep and staying asleep. It is almost like before CPAP only now you have your snorkling gear on . My head feels as though it is in a headlock. Hang in there as I will too. I think this is the right place for help and understanding.

[underdawg]

I hear you. I have been plugged into this machine for just over a week. Still not any signs of improvement but I'll throw out any helpful clues I have (with such limited experience).
1st, I was very disappointed in the "knowledgable" clinician that came to my home to fit my CPAP. I was last on the list of 5 patients that day and the inventory of masts was all but depleted. The clinician had no clue how to measure the right size mask for me and was about to leave me with "a close fit" when I said," wait a minute, why waste both our time coming out here with a device that may have a low probabilty of success." I reach over and pulled all the remaining prepackaged masks out of the bag and found a few that I thought might work. Turns out the one I was originally supposed to use provide no noticable benifit. It was a real dud. Five dissapointing nights. Then I switched to another mask and that seemed to have better pressure. I felt just a wee bit better that next day. Not a lot but just a bit. Again, no experience here but maybe something worth pursueing. So don't hesitate to try another mask. By my count I have about 3 years of low O at night so I going to keep trying.
Sorry I couldnt offer more. I sure share your frustration. From my first diagnosis to receiving the mast was a 8 month ordeal of scheduling dr. visits and lab tests. If you made it this far you owe it to yourself to give it your best try.

[Goofproof]

Same as Diabetes, you NEED a meter to check your treatment. In the case of XPAP treatment, the meter is the machine that collects FULL data, and the software and reader. It's the best way to guage your treatment, excessive leaks, wrong pressure settings as well as many other things can keep your treatment from working. You must become proactive in your own treatment, most of the medical staff don't know or care or have time! Getting the data from the dailies with software can find answers, and by posting the dailies others can help you. Your profile is handy for others to see what you use, but ICONNY is the poorer eat to go TEXT is better, All ICONNY looks alike and wastes others time, time not all will waste. Jim

[elena88]

YES, it will get better..

The first few weeks I was miserable, much worst than before I started.. wanted to quit quite a few times..

its a very big adjustment, your entire body has to get used to breathing while youre sleeping again, and it has to get used to the pressure..

believe it or not, you will not even notice the pressure in a few months.. you will sleep through the night..

If there any particular things you feel are bugging you, just make a list, and bring each and every problem here, and you will get answers,
and then the good results will follow..

[DreamOn]

Fuhrtops, I just sent you a PM (private message) with some info that I hope will be helpful.

[Janknitz]

Elena once referred to those first weeks on CPAP as "the ring of fire" and she wasn't kidding.

This IS hard. It WILL get better!!!! One morning you will wake after realizing you slept many hours and feel GOOD. I have become addicted to that wonderful, floaty feeling I wake with most mornings these day.

The single most important factor is a good mask that you can be comfortable in and have minimal leaks with. Then, it's just getting used to sleeping with a chunk of plastic strapped to your face and weird air flowing.

Make a list of the things that are bugging you the most and pick your top one to let us know about. We can help. Tackle one thing at a time--once we get a few big ones out of the way, your nights will start getting better. Promise. Scout's honor

[kteague]

I remember the first time I got some REAL sleep with my gear. Took a very long time, was only for maybe a couple hours, but it was sooooo good that when I woke up I wondered what had just happened to me. Until then I had kept expecting every night for it to happen just because others here told me it would. I believed them, cause they HAD to be right. I needed that hope. Once I got a little taste of what was yet to come, I was hooked and knew I would do whatever it took to make this work so I could keep getting that feeling.

There are so many new sensations with this treatment, and it's reasonable to expect the brain to be hyperaware of them until those sensations become your new norm and the brain accepts then ignores them. The brain may have to unlearn some bad habits too.

As has been said, confirm through your data that your treatment is effective. That's really the only way to know for sure that your trouble sleeping is just the adjustment phase and not pressure or leak issues. Also, consider if you are on any meds that may disrupt sleep. Did your sleep study make any mention of limb movements? For some, they can disrupt sleep. Hopefully all you need is time and attention.

[journey]

Hi

I am relatively new to CPAP as well with only about 2 months of use. After this time I would not sleep without my machine. I feel wonderful and very rested for the first time in years. Try to be patient with your setup and be confident that it will get better. Mask fit is a very personal thing. I found during my trial night that they had the mask straps way too tight which was quite uncomfortable. Take your time and try a number of them if you can. After a few minutes in bed these days I find that I cannot feel the mask at all. I do find that I tend to wake when I roll over and the mask occasionally moves and leaks. I just accept this and reseal it and go back to sleep. I have found that I now have to sleep on my side where I once slept on my back most of the time. I have had to make this adjustment as I get higher AHI readings while on my back and I find the higher pressures can also wake me up. I have read many of the posts here and can only agree that the collective wisdom of the users have helped greatly. List your problems and seek help for each and I expect that all will improve in time.
Good sleeping.
Wayne

[Mtnviewer]

Before you give up, (not sure why you'd want to so soon anyway), you have to figure out (yourself) WHY your results are not so great. For one thing, you're unconcious (more or less)when the problems are occurring, so you and we are all just guessing as to why you may not be feeling better yet. My personal experience is that I'm not sure that sleep debt either exists or is much of an impediment to results, but that may be the case and if so, give it time.

But more to the point, ALL NEWBIES, (myself included if I knew then what I know now), SHOULD / MUST analyze their entire night's sleep to figure out exactly HOW they sleep. In other words, you can't just put on a mask and turn on the machine pressure and expect to feel great after wearing the set up for 8 hours. That's like taking vitamins and figuring that you are in good health. These are but ONE piece of the puzzle for each of us, and each of us sleeps differently. There are SO MANY VARIABLES to success, and in time you / we figure them out ..... or not if one gives up.

To start with, I'd suggest to video record several nights of your sleeping and to analyze and make notes of what you do and when and if possible, try to match it up to your PAP machine's software data.

If you can't do that, then at LEAST try to figure out if you are sleeping AT ALL on your back and if you are, try to figure out if you are having apneas during that time. APAP will not be great in trying to catch up to stopping many apneas in the supine position, or once it does, if your pressure range is to wide, then that higher pressure may end up waking you up multiple times, so your sleep is disturbed. Some folks are quite content to want to sleep on their backs and have higher pressures and tighter masks, etc..

Try to force yourself to TRY to sleep on your side as much as you can and see if your apneas are reduced and if you start to feel better? My bet is that this will help you and others as much or more than PAP therapy alone in a supine sleeping position. Most folks have far more apena events in the supine position. Gravity in the supine position will simply close the airway. It's not easy for all to stay in a side position. I personally need restraining devices for my head and body, but I only figured this out after watching myself sleep. 2 sleep studies and several "experts", nor the DME, didn't mention this to me, or they didnt' see it during the sleep study. If they had, I would have solved my problem several years earlier than I had after watching myself sleep.

[pdean44]

I had a pretty tough time of it the first 2 weeks. It takes a while to get used to sleeping with the mask and to breathe with the pressure. After a week or so i saw that started having marathin sleeping sessions. My body was craving the more rested sleep and i was paying up some sleep debt. That went on for another couple of weeks and all the wile i was starting to feel better. You have to give the treatment a bit of time. Once you have a handle on it and get everything comfortable and working well you will be quite pleased with the results. Hang in there you will get there. My wife is enjoying here restful sleep without ms esnoring as much as i am enjoying not getting nudged for snorning. I feel a lot better and we can sleep in the same room. You will feel better too just give it a chance.