Is it normal to want to give up wearing CPAP after 3 months

[marydye]

I have been wearing a CPAP for almost three months trying five different masks and now have the Swift LT pillow mask. It is the best one I have used and I am trying hard to be very compliant. I seem to wake up often and don't feel rested like they say you should with wearing a CPAP even after trying for three months. I am on Medicare so am afraid if I give up now they won't pay for the supplies I have already gotten. Any ideas? Just don't know how to solve this problem. Am wondering if perhaps CPAP isn't for everyone.

[Pugsy]

Perhaps there is something in the software reports that might point to why you aren't sleeping well.
Maybe leaks or maybe less than optimal therapy pressure?
Don't you have the PR S1 560?
Could you please add your equipment to your profile so we can see what you are using?
There is software available that you can use or your DME can use to see if your therapy is even optimal and doing what it is supposed to do.
If you have the 560 machine and want the software send me a private message.
If you have the 550 then you can use SleepyHead software and I have links for it in my signature line.

When I first started therapy I was having pretty much the same quality of sleep that I had without the machine.
Come to find out my pressures were optimal. Others find out that they were having leaks or mouth breathing or something else that needed to be worked on before things seemed to work better.

Fragmented sleep for any reason will sure mess with how we feel even with the most perfect of reports.
If there are other issues going on that aren't related to sleep apnea then the machine really isn't designed to fix anything but sleep apnea. It doesn't do much for my back or neck pain which affects my sleep but if I work on each thing that impacts the quality of my sleep I have a better chance of success.

[jweeks]

Hi,

Is it normal to want to give up? Sure...I would love to chuck my machine out the window. I very nearly did during my first week. There were 2 things that kept me going...(1) the people in this group talking me down off the ledge, and (2) the fact that it was helping me considerably.

The issue that I see with your situation is that you are not seeing the benefits.

OSA can cause some really nasty health issues such as heart damage and brain damage. It also had side effects like kidney issues, weight gain (which can lead to diabetes), and it can make you accident prone (especially when driving). Even if you are willing to put up with these issues, I am not sure I want you driving, or running up health care costs with something that is treatable. This is a free country, so you are free to quit.

If you want to stick with it, then there are basically two choices. The first is to continue to work with the medical community, telling them that it isn't working for you, and a better treatment plan has to be developed. The second option is to take control of your own treatment. That means downloading your data, learning how to put it up on a computer screen, and learning how to read the data. Each of these paths have their own challenges. I can tell you that in my own case, it was worth the effort. I went from being functionally disabled to living a high energy and high output lifestyle. I'd like to think that it is possible for you to also see a dramatic improvement.

-john-

[Goofproof]

The world is filled with quiters, quiting is easy. They are also known by another name Losers. It's your health, your choice, until the government decides your are a risk to yourself and others, then the CPAP Poilice will come and sweep you up in the night. Jim

[nanwilson]

Quiting is not an option. Sure I don't like wearing this mask and using the machine....but if I want to stay around for a few more years and see my grandkids grow up...I don 't have a choice!

[chunkyfrog]

It took longer than 3 months to get my energy back.
I can now walk farther than the dog!
Lazy little oaf; wants me to carry him.
I babysat for my three-year old grandson one day last week.
Now that's HARD! Little rascal made me put nearly 5 miles on my pedometer!
It was so much fun, and he's so cute.

[49er]

I have been wearing a CPAP for almost three months trying five different masks and now have the Swift LT pillow mask. It is the best one I have used and I am trying hard to be very compliant. I seem to wake up often and don't feel rested like they say you should with wearing a CPAP even after trying for three months. I am on Medicare so am afraid if I give up now they won't pay for the supplies I have already gotten. Any ideas? Just don't know how to solve this problem. Am wondering if perhaps CPAP isn't for everyone.

Hi,

What do you mean when you say you wake up often? Are you able to get back to sleep?

Pugsy is spot on about checking your software report to see what is going on.

49er

[chunkyfrog]

Early on, I would wake up in the middle of the night and find the mask and my face all sweaty.
It helped a lot to wipe my cushion and face down with an unscented baby wipe so I could get
're-assembled' and back to enjoy the rest of the night.
Remember, the buzz is that our most valuable sleeping happens in that second half--don't miss it!

[squid13]

I've been at this a little over a year and I'm still looking for my perfect mask and I still wake up about 3 times a night. I know why I'm waking up and that's cause I take a lot of baggage to bed with me every night. The last three nights have been bad due to a bad knee with fluid on it and bad shoulders. Luckily I'm getting the fluid drained tomorrow and a shot for the shoulders which will last about a month. I'm not about to quit though cause it's not in my make up, it's me against the machine and I'm going to win. I'm like Nan I just had 2 great grandsons delivered last month and I want to be around to see them grow, so hang in there and as they say this will all come out in the wash in the end. One day you'll look back on this and give yourself a pat on the back for a job well done.

[SleepyToo2]

Mary, everyone above is absolutely right - quitting should not be an option. The questions you should be asking yourself are:
1. Are my straps too tight - or not tight enough?
2. Is the pressure high enough - or too high?
3. Do I need less "help" with the pressure when I breathe out - or more?
4. Is the mask too big - or too small?
5. Am I breathing through my mouth or my nose?
6. Do I need more humidity or less (dry throat, nose, mouth, in the morning)?
7. Have I tried wearing the mask for a while without trying to sleep?
8. Have I thoroughly consulted with my DME to get the treatment optimized? If the DME won't help, how about my sleep doc?
9. Am I under a lot of stress that would be causing me to wake up?
10. Am I too hot at night - or too cold?
11. Do I have thyroid problems?
12. Am I going to bed at approximately the same time each night to a quiet and dark place, with a bed that is "just right" for me?
13. Do I have a comfortable pillow that I can use with my CPAP mask?
14. Do I sleep mostly on my back or on my side? Do I need support to stop me moving about so much?
15. Do I have restless legs, get cramp, or have any other moving problems?
16. Do I clean my mask every day?
17. Have I replaced the mask recently (at least the silicone piece(s))?
18. Do I have supportive friends (you do here!) and family, or do they not believe in CPAP?
19. Is there anything else that could possibly interfere with getting a good night's sleep?
20. Can I think of anything else that could possibly cause me lack of sleep - exercise, eating late, eating "wrong" foods, smoking, drinking too much alcohol, not drinking enough water.

By now, you and everyone else should get the idea that CPAP is not easy to get used to! For many people the answers to these questions are easy, and the solutions are easy. For others, it takes weeks, months, even a year or more before everything becomes a habit ... Please post back with any questions, and let me know if this helps!

[kaiasgram]

I have been wearing a CPAP for almost three months trying five different masks and now have the Swift LT pillow mask. It is the best one I have used and I am trying hard to be very compliant. I seem to wake up often and don't feel rested like they say you should with wearing a CPAP even after trying for three months. I am on Medicare so am afraid if I give up now they won't pay for the supplies I have already gotten. Any ideas? Just don't know how to solve this problem. Am wondering if perhaps CPAP isn't for everyone.

Hi Mary -- First, please please don't let the "quitter" and "loser" remarks keep you from reaching out -- there's so much support, help and good advice here.

I don't think I can top the good practical suggestions that Pugsy, SleepyToo2 and others have already posted here. I just wanted to offer some empathy and say that you're not alone. I'm two and a half months into using CPAP -- not only do I not feel any better, but using CPAP has created some new problems that are not yet solved including jaw pain from the chinstrap, allergic reaction on my scalp from mask straps (itchy and ouchy!), and evil neck pain probably from the jaw issues and sleeping tensely trying not to dislodge the mask and spring leaks. Bottom line, I feel worse than I did before CPAP. It may not be "normal" to want to quit if you're experiencing the benefits, but it sure is normal if you're not! I too have gone through at least 5 masks with multiple failures and continue to stay compliant, hoping something will finally turn around and start improving. Well that plus I'm terrified of desatting into the 70% numbers again while I sleep.

So, let's make a "virtual" deal -- we'll both keep trying, okay? Feel free to pm me.

[Sloop]

but using CPAP has created some new problems that are not yet solved including jaw pain from the chinstrap, allergic reaction on my scalp from mask straps (itchy and ouchy!), and evil neck pain probably from the jaw issues and sleeping tensely trying not to dislodge the mask and spring leaks. Bottom line, I feel worse than I did before CPAP. It may not be "normal" to want to quit if you're experiencing the benefits, but it sure is normal if you're not! I too have gone through at least 5 masks with multiple failures

Kaia -- As you seem to still be having mask issues -- I am just curious -- have you tried the ResMed SoftGel? I have been at this CPAP stuff for two decades and I have never run across anything near as comfortable. The SoftGel uses the Mirage ACTIVA LT frame and the whole original mask (ActiveCell) and headgear was designed to eliminate tight headgear irritation, etc., as it works best when the headgear is almost loose.

http://www.resmed.com/us/products/mirag ... c=patients

I switch out between the ActiveCell (no gel) and the SoftGel mask cushions. Both cushions are amazing.

Here is part of their sales pitch:
Easy and quick to fit, Mirage SoftGel is part of ResMed’s exclusive ConvertAble Series, giving you the choice of two mask cushions, Mirage Activa™ LT or Mirage SoftGel, on one durable frame. Featuring a soft touch with excellent support, Mirage SoftGel adds the comfort, durability and freedom of choice that only a ConvertAble mask can offer.

[kaiasgram]

Kaia -- As you seem to still be having mask issues -- I am just curious -- have you tried the ResMed SoftGel? I have been at this CPAP stuff for two decades and I have never run across anything near as comfortable. The SoftGel uses the Mirage ACTIVA LT frame and the whole original mask (ActiveCell) and headgear was designed to eliminate tight headgear irritation, etc., as it works best when the headgear is almost loose.

http://www.resmed.com/us/products/mirag ... c=patients

I switch out between the ActiveCell (no gel) and the SoftGel face pieces. Both pieces are amazing.

Thanks Sloop. I haven't tried the SoftGel but I'm willing to -- actually is there a full face version of the SoftGel? It'd be nice if I could lose the chinstrap and reduce the "strappage" on my scalp.

Oh, one more question -- do you use a mask liner with the SoftGel?

[Sloop]

Kaia -- As you seem to still be having mask issues -- I am just curious -- have you tried the ResMed SoftGel? I have been at this CPAP stuff for two decades and I have never run across anything near as comfortable. The SoftGel uses the Mirage ACTIVA LT frame and the whole original mask (ActiveCell) and headgear was designed to eliminate tight headgear irritation, etc., as it works best when the headgear is almost loose.

http://www.resmed.com/us/products/mirag ... c=patients

I switch out between the ActiveCell (no gel) and the SoftGel face pieces. Both pieces are amazing.

Thanks Sloop. I've tried two nasal masks (Mirage FX and Quattro FX), both gave me an angry red bump on the bridge of my nose and leaked if I loosened them a bit. I haven't tried the SoftGel but I'm willing to -- actually is there a full face version of the SoftGel? It'd be nice if I could lose the chinstrap and reduce the "strappage" on my scalp.

Oh, one more question -- do you use a mask liner with the SoftGel?

I don't believe the SoftGel or ActiveCell come in a FF version. I could be wrong though.
I automatically assumed you didn't need a FF mask since you are currently using a nasal pillow. From friends I know -- FF masks are much more difficult to reduce leaks.

No, I do not use a mask liner. In fact, I am not sure just what they are and how they function.

[eaglett1111]

This is really one where the community can help, and newbies look to you all who have been through this for alot longer for guidance.

I am I think 5 weeks into it, and have had nights of sleep, nights of waking up every hour, and pretty much everything in between. According to my machine (and the EncoreBasic software) I am NOT experiencing significant AHI episodes, so my saving grace is that I am getting some kind of sleep when I am sleeping. That is more than I know I was getting before the sleep study and before CPAP.

I am one of the lucky ones - I guess - in that the mask is OK. But there is still alot of adjustment. Relaxation tapes are helping me these days. Also, I'm playing with my meds to deal with insomnia and RLS (restless legs). I am not about to give up, and I will do everything I can with my limited knowledge to help any of you not give up. This is our lives. We cannot go back to having no REM sleep. That is deadly.

So hang in there, original poster (sorry I forgot your name). Listen to these folks. They know what they are talking about.