new to cpap -- discouraged

topic posted Tue, March 6, 2007 - 3:40 PM by  karyl
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Tonight will be two weeks with the new CPAP. I am on my third mask already and not doing well with it. I started this thinking it would help me sleep better, feel better and I am giving it all I've got, but growing discouraged. Please give me some advice or hope that the CPAP can work for me?
thanks
karyl
posted by:
karyl
Wichita
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  • Re: new to cpap -- discouraged

    Tue, March 6, 2007 - 3:50 PM
    hugsss

    Karyl...

    what kind of mask..do you have

    have you tried nose pillows?
    • Re: new to cpap -- discouraged

      Wed, March 7, 2007 - 8:30 AM
      My first mask was a type I nose pillows, I think. It had little buds that cover the nostrils with a minimalist type of straps headgear. I liked it but it seemed to leak a lot and whistle. I found myself fiddling with it all night instead of sleeping and gave up after ten nights. Next I went to a mask around the nose. It had a gel inside and a sort of stablizer thingie on the forehead. I managed to keep it on all night two nights in a row and thought my woes were over -- until I woke up with red welts where the mask touched my cheek. I thought I had adjusted it too tightly, so readjusted for the next night, woke up with worsening red welts and rash. I guess an allergic reaction of some sort. The skin on my cheeks was peeling off. I figured that was a sign the mask was not going to be good for me lol.
      Now, since Monday, I have what I call an Elephant's Trunk lol. It has a soft piece under my nose with buds that go inside of my nostrils and heavy y-shaped tubing --the 'tunk' -- that hangs below about 10-12 inches. The 'trunk' can also be pulled up and affixed to forehead strap with velcro and goes back over the top of the head.
      Monday and Tuesday nights I had to finally take it off to get to sleep. It does not seal well, so it is much noisier than either of the first two masks. And the inside of my nostrils get sore from it. The trunk is so unwieldy that any time it gets bumped it hurts my nostrils. However, last night was a bit better. It seemed to get seated a bit better so was not as noisy and I did finally fall asleep with it and kept in on all night.
      I should explain that I have problems falling asleep and have been going through a particularly bad spell of it even before the CPAP became a part of my nightly routine. I have a type of lupus and fibro.
      I am sorry my descriptions are non-specific for maker, etc.
  • Re: new to cpap -- discouraged

    Tue, March 6, 2007 - 7:50 PM
    Yes Karyl, CPAP can take some getting used to so please do NOT get discouraged. I'm also relatively new to using a CPAP and the wonderful people of this tribe helped me immensely. If you look over this tribe's topics you'll find a wealth of information. One "warning" though, I'm one of the very unusual people who had no difficulties adjusting to CPAP and this group tends to joke about my being the "poster child for CPAP". Just because it was fairly easy for me to adjust does NOT mean it'll be easy for everyone. The right mask and headgear makes all the difference. So, as Heron asked, just let us know what type of equipment you're using and what some of your difficulties are and we'll try our best to get you a good night's sleep every night!!

    We're here for you!
    Leah
  • mc
    mc
    offline 63

    Re: new to cpap -- discouraged

    Tue, March 6, 2007 - 11:17 PM
    Welcome Karyl...
    And welcome to the frustrating but lifesaving world of apnea therapy!

    We feel your pain and frustration. At least you know people here understand what you are going through. My intitial advice is:

    Don't give up.

    While some adapt and comply rather quickly, others (like myself) took years to finally get "used to" living with cpap/bipap therapy.

    Let us know in more specifics what is bothering you and hopefully we can share experiences and give advice. If not, you will become part of a much needed, growing community database. Browse through our discussion history to see if some of our experiences mirror yours. Or, if the list messages is too overwhelming, just start a new one. We don't care about repeats. We just want people to find a place of solace and understanding about apnea therapy.

    I'm glad you are here!

    Peace.
    MC
  • Re: new to cpap -- discouraged

    Wed, March 7, 2007 - 3:35 AM
    Karyl...just want to say..you have found the best place..

    these folks are great..and very supportive..as they have walkd this walk

    they have been there for me... and I am still struggling with this ..beasty machine..

    do not give uppppppppppppp....
    • Re: new to cpap -- discouraged

      Wed, March 7, 2007 - 8:35 AM
      Thank you all so much for the welcome and response. I began with the CPAP fully expecting it would work for me and that I'd have to adjust to it but would begin to feel some of the good effects I've heard about -- like feeling rested. To my dismay, since beginning the CPAP, I am feeling the worst I've felt in over six months. I have very little energy, can barely get up in the mornings -- even by midmorning, and spend most of the day recovering from the night.
      I have to confess the last couple of nights, I go to bed now dreading the night and wrestling with the mask all night. I did not want a fullface mask (claustrophobia), so went with the most minimal mask they had to start with. Even though I was struggling to keep it in place at night, I have almost been sorry I didn't keep on trying with it.
      • Re: new to cpap -- discouraged

        Wed, March 7, 2007 - 8:38 AM
        I forgot to say that I have reached the point of feeling like a whiner with the mask problems. Have any of you had to try many different masks to find the right one for you? Do the masks fit better for some reason as they age? Also I do have the humidifier with my CPAP. I was so dried out the first few nights that the insurance OK'd it.
        • mc
          mc
          offline 63

          Re: new to cpap -- discouraged

          Mon, March 12, 2007 - 9:13 AM
          Karyl...
          Sorry for the delayed response to this particular message.

          Firstly...do not feel like a whiner. Sleep problems and tackling CPAP therapy is dauntng, intimidating and completely unnatural. So, vent away!!!!!


          Secondly...Because I am a mouth breather, I use a full face mask - well, it covers my nose and mouth but my eyes are free. I went through a couple before finally finding one that I felt comfortable enough to stick with. In fact, for me finding the righ mask had a lot to do with finally complying to my regimen.

          I personally feel the mask makes a huge difference in the relative level of comfort.

          Peace, Karyl.
          MC
      • Re: new to cpap -- discouraged

        Wed, March 7, 2007 - 9:36 AM
        I have been very happy with the nose pillows

        and they do whistle..and loose a little air..but I have found if I adjust the exit place it kind of moves a little

        and I get those little pillows to sorta suction on ...fitted right on the nostrils... it is relatively freeing..

        and yes ..when I move I have to adjust it abit..that doesn't seem to bother me too much

        am still having a hard time...keeping the thing on my nose all night..

        I did make two nights... but last night..made it till around 2pm..and than yanked the thing off..
        think it just takes time..Karyl...to get use to it..

        Mc..said it really took him a year... to fully adjust..

        don't lose hope...keep trying to sort it out.. and getting use to it...
        • Re: new to cpap -- discouraged

          Mon, March 12, 2007 - 8:15 AM
          With the nose pillows, I am finding my nares get quite irritated where the little buds go up inside. Seems to be friction when I move around and that is making it sore. After finally getting two entire nights with the nose pillows in place all night, the third night, I couldn't bear to wear it for more than a couple of hours.
          I notice they gave me a sample of some Dermal Cream. But there are no instructions for its use. It has some aloe but no oils or petroleum so I assume it is for use with the friction-irritated inside nose tissues. Do you have any info about this?
          thanks
          karyl

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