Question for CPAP Users

Discussion in 'Fibromyalgia Main Forum' started by Musica, Aug 27, 2005.

  1. Musica

    Musica New Member

    I've been using a CPAP since the beginning of June. I changed from a nasal mask to pillows which is better. And maybe it helps, based on how I felt after one night when I didn't use it. BUT. But, I wake up about every 2 hours, on average. And I end up shutting it off when I wake up early morning, about 5:30 or 6. So I may be in bed 6 hours and only log 4 hours on it. And I'm told the 4 hours should be asleep, not just wearing it 4 hours.

    I would hate to think I am struggling with this and not even getting the medical benefit I need. How long has it taken you to adjust to a CPAP, especially without waking up during the night? I know a sleep cycle is about 90 minutes long and everyone has some type of cortical arousal at the end of it, but not conscious wakenings.

    How long can it take?

    Oops, I thought of another question. If you have been in the hospital after starting CPAP and they have known you have sleep apnea, have you brought your machine or have they made you use one of theirs? I'm wondering whether I will be forced to use one when I have surgery. It seems like it would be enough to deal with the after effects of the surgery, unless the pain meds really take away all pain.
  2. sheried

    sheried New Member

    I went for months of waking up and removing my CPAP. I switched to the nasal pillows and would wake up and would have taken it off sometime in the night. Finally, I went to the canulla type mask and I have had no problems with it.

    I would take my machine with me to the hospital. You don't want to use another machine or gear for sanitary reasons.

    Good luck,
  3. JenniferAnn539

    JenniferAnn539 New Member

    What are nasal pillows?

    I have a family member that finds the mask too uncomfortable and if there is another option, would love to know about it.

  4. pepper

    pepper New Member

    I have seen these mentioned before and asked about them but did not get a reply. I use a mask that is similar to the oxygen that they give you in the hospital - a long tube (thicker than the one in the hospital) with two little thingies that go in my nostris. It is called NasalAire here in Canada but may have a different name in the U.S.

    Are those nasal pillows? I like it much better than the other masks I tried because there is nothing on my head and very little on my face. Because I am so hot at night, that is a huge benefit.

    The only problem is that it is very noisy. The others I tried were so quiet in compariaon.

    I have been using mine since December but my experience is just like yours, Musica. I used to wake up at least every hour (often more frequently) but with the CPAP I wake up every 2 hours. I wake up early in the morning and just take it off. I guess I am just fed up with it by then.

    The sleep specialist told me that if I am still waking up, it has nothing to do with sleep apnea. That there are other "issues" going on. She was not very helpful and I am wondering if it is just another CFS/FM thing that they haven't figured out yet.

    I would definitely bring my own CPAP to the hospital. You will probably sleep better with it and certainly do not want to use one of theirs. Also, if you don't feel like using it, you don't have to, but at least you would have the option.


  5. cjcookie

    cjcookie New Member

    I use a full face mask.
  6. nanswajo

    nanswajo New Member


    I use a CPAP and have for about 3 years. I started out with nasal thingys but it didn't work for me because I open my mouth when I sleep and all the air would rush out my mouth, so I had to go to a full face mask. Some are more comfortable than others and they keep coming out with new ones. You can get a new one every six months on my insurance.

    The last surgery I had was for Sleep apnea--didn't help much and was the most painful thing that ever happened to me. They never used a CPAP with me while I was in the hospital, just oxygen, but that might have been because I had a reaction to the anethesia and stopped breathing in the recovery room.

    I have been in the ER a few times for long periods and I expressed my concern about the sleep apnea and falling asleep, but they said not to worry because they had me hooked up to all sorts of monitors and there was nothing to worry about, so check and see, as you might not need anything at all while in the hospital.

    Also, I find that I do wake up and sometimes the CPAP is the problem, mostly if the mask is leaking and making noises. Make sure the mask is the right size, is adjusted properly and that the pressure really is correct. There is some amount of judgement used in determining your final pressure as your need varies throughout the night. It could be that it is really to high or too low for you.

    There is also a CPAP for people who have a hard time adjusting. It doesn't work as well for the apnea, but if you are not using it now it would certainly be better! That machine reduces the pressure on the outbreath ( I forget the name of it) and therefore makes it more comfortable for you.

    I would check with another doctor or get another opinion and maybe talk to a resperitory (sp?) therapist. There are options and adjustments that can be made for you.

    When I first started using the CPAP, I had lots of anxiety about all that stuff on my face and I used Klonopin as it helps with anxiety and sleep. You just have to be careful because if the CPAP is not right the Klonopin can put you farther under and keep you from waking yourself up if you stop breathing. You don't want to use it or anything sedative without the CPAP.

    My best to you. I sympathize! Nancy
    [This Message was Edited on 08/28/2005]
  7. cjcookie

    cjcookie New Member

    No way would that work for me. I would rip it out while I was asleep - can't stand something up my nose. I've learned that I can't wear face cream where my full face mask goes and that I do take it off at times when I sleep but I need it so I continue on. I breathe out of my mouth a lot - thus the full face mask.
  8. teacher

    teacher New Member

    is the name of the machine that lowers the air pressure when you exhale. My cousin uses one. He tried many masks before they tried a new machine.

    Also, he was just in the hospital and he took his machine. Once it was checked out by hospital staff, he had no problems using while he was in.

  9. JLH

    JLH New Member

    I have used my CPAP for quite a few years now and I LOVE IT!!

    It really helps me sleep soooo much better. It only took me a couple nights to get used to it. I guess because my mind knew that I had no choice--I had to get used to it!

    I was in the hospital for congestive heart failure, which was caused by my obstructive sleep apnea!!

    I have a "gel mask", it's blue and has all this soft gel stuff in it so it won't make marks on your face or hurt your face. It's great--I'm on my second one! (I think Medicare allows you to get a new one every 3 months--if I remember correctly!)

    I, too, would like to know what nasal pillows are!!!!!

    I also have an oxygen concentrator hooked up to my CPAP machine to mix oxygen in with the forced air.

    I wake up every now and then during the night, but only if I need to make a trip to the bathroom! I just take off my mask, and put it back on when I get back in bed, and I'm asleep again in a couple minutes.

    When I went to the hospital, I didn't want to fool with carrying mine there, so I used theirs. I did not have to worry about masks--they gave me a new one. As far as sanitary--I just hope their big machine (they had a big machine, not a table top model like we have at home) was properly sterlizied -- it was probably cleaned more often than mine at home is!!!!

    I can't sleep without mine. It has made sleeping a pleasure now!!

    I still take my sleep meds, though -- I take Zanaflex.

    Take care,
  10. JLH

    JLH New Member

    Still awaiting answer on what are nasal pillows??????????
  11. Musica

    Musica New Member

    Pepper was right about the nasal pillows. They are a long tube with two "little thingies" that go in the nostrils. Someone said they couldn't stand things up their nose, but they don't go far in. In fact, the instructions say they are placed at the opening of the nostrils. I still find it better than the nose mask - even the blue gel mask. For some reason, I slept with it fine for the titration study, but the Comfort Gel mask I was using first really bugged me. The feeling of plastic-type material around my nose and the piece that rests against the forehead drove me NUTS! Each to their own, I guess, which is why they come up with different styles.

    I like the pillows better because there is less resting against my face, especially of a plastic type nature. I have the Resmed Swift, as well. I always know when I take it off, although I know some people do take it off without knowing they do!

    I don't think I need a biPAP. The CPAP works fine that way, since I can ramp it down to 4; otherwise, it is hard to breathe out when it first gets going, even though it only takes a 7 to get rid of the apneas.

    I guess I was wondering if I even needed to bother using any CPAP for the 2 or 3 days I will be in the hospital. It sounds like maybe I should at least bring mine. (sigh)

    It's comforting to know this can take quite some time to get used to. I just hope it doesn't take much longer! Good luck to everyone else who is struggling to adapt.
  12. TXFMmom

    TXFMmom New Member

    I am claustrophobic, so I tried the nasal pillows. BIG MISTAKE FOR ME.

    The first night, I awakened the next morning and my nose was red and irritated. The resp. guy said that often happened. The next morning, I awakened in pain, my nose swollen to twice its' size, and the soft tissue of my nose sloughed. I was allergic to the stuff which made the little nipples.

    Had to wait a week, and then went ont he mask. Fortunately, I had the CPAP machine where it gradually came on, instead of going full force. I practiced by putting on the mask several times for a while, and within a few days I was up to wearing it all night. However, there are masks which have a cushion filled with a gel and they are easier to fit and more comfortable. The others left me with an indentation which stayed all day.

    I was a Certified Registered Nurse Anesthetist for 26 years before becoming disabled, so I know masks and how to establish airways.

    Nasal pillows may be alright for some people, but now, I am so attached to my mask, that I couldn't sleep without it.
  13. JLH

    JLH New Member

    Thanks for the info!

    I don't think I would like these -- I'll stick with my gel mask.

  14. razorqueen

    razorqueen Member

    and has a gel mask with a chin strap, because his mouth always opens up and boy, does that make a LOUD hissing noise! He actually would like to get a full face mask, so he doesn't need the chin strap, as it often doesn't stay on, or he doesn't put it on tight enough. That was when he actually used it. He hasn't used it in a long time, becuase we can't sleep in the same room anymore. My schedule has gone all hay wire, and he needs to get to bed before I do, and he won't put his mask on with out falling alseep first, and me having to wake him up to put it on,,,, you can see that this could create a problem. Just as I am falling asleep, HE starts snoring,,, yeah, so separate sleeping rooms for us. He is a big boy, and I am NOT his mother, and I refuse to have to wake him up for him to put his cpap on. He's been thinking he really should start using it again. duh.
  15. pepper

    pepper New Member

    I guess that is what I have then.

    And I must say I like it so much more than a face mask. I am hot, hot, hot all the time and simply could not have used anything that went on my head or on my face in this summer heat.

    It would be of little use to someone who opens their mouth while sleeping but luckily I keep mine closed. There would be some people around here who might say that is the only time I do that. :)

  16. tngirl

    tngirl New Member

    I have used several different masks including the gel mask. I now use the Swift that has the little nipples:) or pillows that fit into your nose. It is important to get the right size pillows.

    I went to this kind because after awhile I started getting a lot of facial pain. The swift has very little actually on your face.

    I'm a restless sleeper and it doesn't leak as easy as some of the other masks I've had.

    My nose was a little sore the first morning after I used it. I think I had it on too tight. I used moisturizer a couple of times that day and it was ok by bedtime. I didn't put it so tight after that and it was ok.
  17. tilla

    tilla New Member

    I am about to be tested and will probably end up with CPAP. A friend of mine told me about a device he had invented. It has the mouthpiece like someone else mentioned. I grind my teeth at night, so that might work for me. He has a website. Don't know if I am suppose to mention sites, but you can just put in "no mask" and you should be able to find it.