???'s for those on CPAP

Discussion in 'Fibromyalgia Main Forum' started by nanswajo, Aug 4, 2005.

  1. nanswajo

    nanswajo New Member

    Hi All:

    I am on CPAP for Sleep Apnea and notice that others are too. I am curious about what pressure your machine is set to. Mine is set at 12. At one point after surgery I was able to go down to 8, but found that to not be enough so went up to 10.

    Since I have gained weight I have had to go back up to 12 and find it so uncomfortable. 10 was so much easier. At 12 if I lay in my back the mask leaks and makes a lot of noise. If I sleep on my side and pull the mask really tight I can keep it from leaking so much.

    I feel worn out, I think, from breathing out against the pressure. I keep reminding myself I need to lose the weight so I can go back to 10. My doctor told me the rule of thumb is for every 15 lbs gained you need to go up one degree in pressure.

    Anyone else on pressure this high?

    ZZZZZ....Nancy
  2. pepper

    pepper New Member

    Does your CPAP have a ramp feature? I find that makes it much easier to deal with the pressure. Mine is set at 9 but it starts out at 4 and takes 25 min. to get to 9. Then I ramp it again and again until I fall asleep.

    The sleep specialist told me that if I found it uncomfortable it was not at the right pressure. Another indication is pulling it off during the night.

    Why do you think that the pressure needs to be so high? What happens if you keep it at 10?

    Pepper
  3. JLH

    JLH New Member

    WOW! So yours is set on 12!! That is definitely higher than mine. Mine is set on 7 - and I'm no skinny minnie!!!

    I have never heard that "rule of thumb" for every 15 lbs gained that you need to go up one degree in pressure"!

    My sister has hers set on either 10 or 12, but she has COPD really bad. She had been a smoker all of her life--she is "supposed" to have quit now.

    I have never smoked. I don'know if that makes a difference in pressure settings or not--you know, the shape of your lungs.

    I also have oxygen hooked up to my CPAP.

    If it is not comfortable at 12, have it re-set for 10. I would think that it would be better to sleep with it on a 10 than not sleep with it at all!!

    About your mask not sealing. Do you have a plain plastic-type mask? I have tried them all, and what I like the best is a "gel mask". Around the nose it is all blue soft gel that is soft to your face and kind of molds to your nose and doesn't leak air nearly as bad. The next time you get a mask, try one of them!

    I'm on Medicare, due to being on SSDI, and they will pay for a new mask once every 4 months, then my secondary insurance picks up the balance. If I were dealing with my secondary insurance only, I don't know what their time schedule is. I mark my calendar when it's time for a new one (whether I need it or not! I wants spares!) and that is how I have tried the different varieties.

    Do you have a humidifer and warmed unit with yours?

    I also think that a humidifer is a MUST with a CPAP in order not to dry out your nose and throat so much.

    I have Obstructive Sleep Apnea. It is what caused me to go into congestive heart failure.

    It's a serious problem, so it is important that you get your pressure correct and a properly fitting mask, too! If necessary, take your mask to wherever you got it and have them adjust it for you.

    Good luck with it,
    Janet
  4. helpeachother

    helpeachother New Member

    Hi Nancy, sorry to hear about the struggle with your machine. I think our stories are similar; when you say "the operation" do you mean the throat, tonsil etc thing?

    I was on the CPAP whic was working fine UNTIL i had the throat operation. They removed my uvula and widened the throat opening. It did not help the apnea, but it did render the CPAP ineffective because I was fighting against the machine with the exhale, and was exhausted and sore.

    So, they sent me for another sleep study and with some "guidance" from me on what was happening, I finally got a BIPAP machine. This is exactly the sam as a CPAP (same mask, and the same INHALE pressure) but when you EXhale, the pressure drops to a second lower setting which allows an easy breathe-out.

    My CPAP was originally set on a 3 or 4, when i got the BIPAP, the original setting was a 6/0 (six inhale and zero exhale). As I gained weight, it crept up to a 7-8 inhale and still the comfortable zero on exhale.

    Most new machines have the lowest exhale setting available as a 3 for some apnea reason which i didn't understand, but fortunately mine is old and stout and goes down to zero on exhale.

    A few more things to think about; if you are lying on your back and have any significant WEIGHT of covers on you, the setting must be higher to push in against the extra weight. So, in the winter, or if you sleep on your back under the covers, you should note the difference in effectiveness.

    Also, I find a cool room (or fan) lets me breathe cool air more easily through the nose mask, as warm air stifles me and the thing inevitabley gets thrown off. Some people like warm air, so thats a factor too.

    Good luck and I wish you pleasant dreams. Peace
  5. nanswajo

    nanswajo New Member

    Lots of good suggestions! And great to not feel alone with the CPAP.

    I do have a humidifier and a ramping machine. I'm not really a big woman, though I have gained weight recently. I think I just have a small throat.

    The surgery I had was the uvula, tonsil, and tounge thing. Wow was that painful!!

    I'm interested in the oxygen. I wonder why that is needed sometimes. I don't know what COPD is, but I don't have any lung problems. So far my heart is OK, fortunately.

    I used to throw the mask off at night, but I keep it on now. The blue gel mask is interesting to me. My clinic does not seem to have it, but I do have a full face mask and I just got a new one so I will have to wait to try something else.

    I think I WILL check into trying to ask for a 10 setting.

    Anyone else out there use CPAP?

    Nancy
  6. breton

    breton New Member

    I've been on CPAP for six years, and mine is set at 15. The nurse in my doctor's office told me the average was 7. I, too, have to wear my mask very tight or it leaks and keeps waking me up all night long, which of course is what it's designed to prevent. As a result of wearing it so tight, I wake up every morning with red welts all over my face. It's great fun. All night I look like Darth Vader. Come morning, it's more like the Bride of Frankenstein. I just got a new mask. I asked about the possibility of getting a different kind of mask that wouldn't leave the welts. I was told that of course, they have other styles of masks, but that my insurance wouldn't pay for them. There's a surprise.

    When I first went on CPAP, the pressure drove me crazy. Now I don't even notice it. Sometimes, I have to pull the mask off my face to make sure it's really working. I hate the thing, but I wouldn't even try to sleep without it. Thanks to the fibromyalgia, I still wake up feeling like I was run over by a truck. But at least I'm not jolting awake every thirty seconds all night long like I did before. Or even worse, waking at 2 a.m. with killer headaches because my brain was being deprived of oxygen.

    I don't like being on the thing, but it beats the alternative...I think!

  7. Mikie

    Mikie Moderator

    I am having my sleep study Tues. night. I sure hope I don't have sleep apnea. The CPAP machines sound like they are worse than the apnea.

    Love, Mikie
  8. Vada

    Vada New Member

    I have had mine for about ayear now and couldn't speep without it. I have a humidifier on mine which I absolutely love. I have gone through 2 masks and just love the present one that I have since it isn't a full face mask that covers my entire face. It's one that has a very soft nasal opening and fits snug around my nose. I don't remember the actual setting but mine ramps for the first 5 minutes which makes the pressure much better. I have the luck to have Kaiser insurance which covers anything I need. All I have to do is call my apnea specialist, let her know what I need and the next day I go and pick it up free of charge. Lavada
  9. tngirl

    tngirl New Member

    My CPAP started out at 7 and now is at a 10,although I have lost weight. So go figure? I am used to the pressure so it doesn't bother me when I exhale.

    Mine does have a ramp feature to help get adjusted. The pressure starts out lower and works up.

    I have used cpap for almost 3 years for obstructive sleep apnea.

    And yes, I know you can get Bipap machines that only gives the pressure when you inhale.

    I don't think they give you oxygen unless you have a respiratory problem like copd (congestive heart failure)I think most people (espcially with obstructive sleep apnea) just need plain old air to hold their throat open.


    I have found the biggest difference to be which mask I use. I have tried several including the blue gel one that was mentioned above. I believe the name for that is a Profile Lite.

    I wore the profile lite a while, it seals good but is rather heavy to me.

    I have also used a Comfort Classic. That one did not seal good for me, but might for you. This one was much lighter weight.

    I used the "Adam" was nasal pillows once but couldn't keep the headgear on. Drove me crazy. That was my least favorite.Maybe my heads shaped funny or something?!!

    I have used a Vista Mirage. I liked that one, it was less restrictive with nothing up between your eyes or on your forehead. It was not heavy. Easier to watch TV or read if that helps get you drowsy.

    I stopped using the Vista Mirage because the fibro made me have facial pain and the mask started hurting sometimes. I wore it comfortably for over a year.

    Now I am using a Mirage "Swift" made by the same company as the Vista. It is a nasal pillow system It is great! You can wear glasses fine with this one if you need to read or watch tv to get sleepy.

    I think it is may favorite so far. The headgear is comfortable and nothing presses on your face at all. It rests below your nose sorta above your lips.

    A great plus is that it leaves no marks on your face the next morning. Every other mask I ever wore left indentions or marks on my face that took a couple hours to wear off.

    It goes into your nose kind of like an oxygen canula. Except there are nasal pillows that insert into your nose.
    No leaks even when I toss and turn. It is very light.

    It is very important that whatever health care provider you use lets you try on several. Mine actually hook them up to a cpap machine set at your own individual pressure.

    It is good to recline when trying on the masks too, after all thats how you sleep and it will feel differently lying down.

    Also, the size of the mask or nasal pillows is important.

    Pulling the mask off in the night was a problem for me at first. In my case it was not because the pressure was too high. It is because I am somewhat claustrophobic.

    If you are, tell your healthcare provider. They should try and show you the least restrictive ones.

    If you put cpap mask into a search engine you will get lots to look at.

    I would not sleep without my cpap now, although it was a little hard to get used to. Keep trying.

    Oh, I might mention one thing. I had a hard time breathing at first because I would get such nasal congestion. I ended up having surgery on my nose. I hope thats not a problem for you.

    I had a deviated septum and really large turbinates. I didn't even know we had something called turbinates inside us! If you have large turbinates they inflate until you have to breathe through your mouth. Can inflate due to position, humidity etc.

    This was probaby WAY too much information...
    [This Message was Edited on 08/05/2005]
    [This Message was Edited on 08/05/2005]
  10. Pat45

    Pat45 New Member

    Hi, I've been on a c-pap for about 6 years. The pressure is 11 and has never had to be changed.

    I also have to wear the mask very tight and it sure does leave welts. I'll have to look into the gel type, might be more comfortable.

    I don't go anywhere or even take a short nap without it.

    Good luck with yours and take good care, Pat
  11. nanswajo

    nanswajo New Member

    Hi and thank you everyone!. So much good info. I, too, wake up with dents in my face. I think it has permanently deepened my old age frown lines (boo hoo).

    I also had a deviated septum fixed, but similar to all of you I am still wicked tired when I wakeup.

    One interesting thing for me is that I can sleep sitting up without CPAP just fine, such as in the car or in a lounge chair, but if I lay down without CPAP, forget it.

    There is a feeling of loss of intimacy for me. You certainly can't cuddle at night with the mask on. But, I am glad to have discovered the problem and remedied it. And for those of you scared of CPAP, I'm sure you will worry. I did. And at first I was pretty bummed out. But now, like someone else mentioned, I wouldn't sleep without it and don't notice too much. In a way, it has almost become a comforting thing to put it on at night, so know that you can and probably will get used to it .

    Happy sleeping to all, Nancy
  12. pepper

    pepper New Member

    to one that is just a tube that inserts into the nostrils. It is so much cooler and more comfortable than the ones with the straps that sit on your face! This is just a tube that inserts in the nostrils and is hooked around your ears, just like the tubes from an oxygen mask.

    I had to ask the sleep specialist for it after I saw it on a poster in her office and she said that most people don't like this type. I insisted on trying it because I am so hot at night. This was definitely the answer for me.

    Pepper
  13. JLH

    JLH New Member

    You said you didn't know what COPD was -- it's a lung thing -- I think it stands for Chronic Obstructive Pulmonary Disease ... or something like that!!!

    However, I got my oxygen added on to my cpap and I do not have COPD. I just had my oxygen level checked at night and it went down to 73 one time and 79 another. It was low enough to meet the criteria for oxygen. During the daytime, it is always at least 94 or above. Go figure.

    The blue gel masks, which look like a T -- nothing over your eye, and a straight piece over your nose inbetween your eye brows, DOES NOT leave big marks all over your face in the morning!!! That is one reason why I like it the best!! That's why I changed to it!

    I did not like the ones that went into your nostrils, like an oxygen canula does.

    Janet