CPAP USERS - LET'S TALK!

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Blessings2011
Blessings2011 Member Posts: 4,276
edited April 2018 in Life After Breast Cancer

I have officially been dx'd with Sleep Apnea, and just spent my first night using a loaner CPAP machine.

I did a search for CPAP here on BCO and found ten pages of miscellaneous posts that mentioned CPAPs, but they were scattered everywhere in so many forums, and many were very old.

I wanted to start a new thread dedicated just to those who do have sleep apnea, and use a CPAP, or APAP machine. 

I had my first sleep test several months ago - at home, thank goodness - and the results were inconclusive. All I had to wear was a sports-type watch on my hand and two finger clamps. The second test was more intense: a band above the boobs, one under the boobs, and one around my waist with a big electronic box, along with a nasal cannula with prongs in my nose and in my mouth. THAT was fun...

I was finally dx'd with a combination of Obstructive Sleep Apnea (the most common kind, where the most frequent symptom is loud snoring - which I don't have); and Central Sleep Apnea, where my brain does not tell my body to breathe. I am very aware of this.... I'll be reading in bed, and realize I am not breathing at all. When I do take a breath, it's shallow, not a huge gasp of air. Test results showed my blood oxygen as very low during the night.

SO - have you had a CPAP for a long time? Has it helped? Did you give it up? Do you have any suggestions for newbies? 

Are you newly diagnosed? Looking for answers?

Just looking for input here!!!! Thanks!!!

Anyone?

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Comments

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited October 2014

    My CPAP machine helps me sleep better, I have oxygen hooked

    to it. I had it for awhile now and I am not so tired. My sleep Apena

    has got worst and they got me a stronger machine. I have both

    apena  and I stop breathing a lot more, They just started charging rent

    for the machine and I am fighting that.  I have to have cold water to

    help open my throat and use the streamer( Inside the machine) every night.

    Hope You can keep this open and we can help each other. Good

    Luck Blessings2011

  • QCA
    QCA Member Posts: 1,539
    edited October 2014

    Hi Blessings.  I've used a bipap machine for the past 11 years.  (Same principle as CPAP but with a slight reduction of pressure on the exhale.)  I could not live without it.  I had a sleep study done after I fell out of our high (!) bed onto the hardwood floor.  At the time, I was drinking a cup of coffee and reading the paper, but had gone to sleep sitting up.

    My savvy doctor had done some work in a sleep center and suspected sleep apnea, so scheduled a sleep study.  From the get-go, I was prescribed the bi-pap.  I've used it every single night since I got it.  (On my 3rd machine now.)  It goes where I go, period.  I feel 100% better with quality sleep.

    One of the keys to this is finding a mask you're comfortable with.  I started out with the Ultra Mirage, but now use Optilife Nasal Pillows, which are less intrusive on the face.  

    Feel free to ask questions here, or you can pm me and I'll try to help you in any way I can.  I feel like the sleep apnea poster child, and I can't begin to praise this treatment enough!  Hang in there.  There's a mask out there for you that will work!  

    Kathy

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2014

    Great idea for a thread.....I've been using cpap since 2006 and love it.  i yawn when i reach for my mask.  it is very important to get the right mask.  Having centrals it is also important to have the right machine.  i don't have centrals but read threads on cpaptalk.com.  The people there are very knowledgeable.  i have an auto machine so am able to read the data to see how my night went but I lost interest in that since it is going well.  Some of the people at cpaptalk are really into monitoring their treatment.

    My favourite mask is the Fisher/Paykel Eson. Love it.  if you don't sleep alone it is very quiet. make sure the person selling your equipment knows what they are doing and lets you try several masks with the machine on so you will know how it feels.

    i hope you have an easy time adjusting. you will notice a difference.

  • Sunny_Girl
    Sunny_Girl Member Posts: 111
    edited October 2014

    Agree with the above posts!  Don't go anywhere without it and even put it on for naps.  Don't care - I love it!!  Good luck - 

    Patty

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Hello,footprintsangel,
    and thanks for replying! 

    I have heard of others who use oxygen in addition to
    the regular filtered air that comes through the APAP. 

    My DH was so happy when
    his personal machine arrived and it had a humidifier! He was waking up with his
    mouth as dry as the desert. I've only noticed that a few times. What I do
    notice is when I use Biotene (mouth moisturizer) I drool. NOT pleasant. The
    loaner machines don't have humidifiers. 

    I SO hope you can get your machine
    coverage authorized!! How dreadful to find something (non-drug-related) that
    makes you feel better.... and not being able to get it due to coverage issues! 

    Prayers for a quick resolution to this problem!!!

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Hi,QCA- gosh
    - you really DID have some obvious symptoms! 

    You mentioned taking your machine
    everywhere you go..... last month, DH took a trip to the high desert with four
    friends. They traveled to a ghost town in Nevada, and stayed in an abandoned
    miner's cabin that belonged to one of the guys. 

    It was tiny, filthy, filled
    with dirt and dust and probably a gazillion mouse droppings. (Can you say
    "Hanta Virus?) They had a ball. 

    Anyway, prior to the trip, DH ordered a
    battery pack for his CPAP... it wasn't cheap (maybe $300?) but goes all night
    with the humidifier on, and more with it off. You can recharge it during the
    day. He did a nose rinse at night, then hooked himself up to his APAP. I think he was the only one who could breathe the whole time. He was able to recharge the battery, because they run a big orange extension cord down
    the road to the nearest house.

    Such cowboys!!! 

    He plans on taking his machine EVERYWHERE!!!

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Wrenn-
    thanks so much for that link to cpaptalk.com. I will definitely look for it. I
    hear you when you say the right mask is crucial! That is what has kept me up
    the past few nights.

    I started with the Fisher-Paykel Simplus Full Face mask in Medium, but the tech had sent me home with the Small, just in case. (I was in-between.)

    The Medium hurt the underside of my cheekbones something awful, but the Small wasn't working for some reason either. I kept switching them out in the middle of the night.

    Then I called Kaiser, and the Tech left me an F&P Zest Nasal Mask. MAJOR FAIL. My nose was stuffy, and I felt like I was suffocating.

    DH tried the Amara (didn't fit) and finally got a good fit from the Quattro Full Face Mask. I forget what brand it is.

    I have four more nights with the loaner, then I'll request a personal mask fitting, so it comes in about the same time as my personal machine.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Sunny_Girl – I thought of you this afternoon when I almost
    took a nap! I ended up not taking one, but I thought, if this thing works, I
    could wear it all the time! Who cares how I look!

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    SO - three nights so far on the loaner. I don't feel like I'm getting much air out of it, because DH told me that his loaner blew so much air it lifted the mask right off his face!

    Whenever I check, the setting is always at 4. I think his went up to 24. (Except this morning, mine was on 10...)

    I did better last night ... kept the Small Full Face mask on all night. Got up to use the bathroom twice, but am used to hooking my hose back on in the dark.

    For the first time, I think I slept all night, and for the first time, I remember dreaming. But I woke up at 8 a.m., cold, because the blankets had slipped off.

    I know it's a learning curve... and just something I need to get used to.

    I am so glad to find others who are using the CPAP-APAP-Bi-PAP and loving it!

    Four more nights to go.... wish me luck!!!

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Last night I used the small mask, but kept futzing with the headgear straps all night. I woke up this morning, on my back, to a blast of air, and total chipmunk cheeks!!!! The machine was at 12.5

    I finally got wise and instead of turning the machine off, just used the "reset" button to bring it back to 4. But by then, I was already awake.

    Three more nights to go!!!

  • QCA
    QCA Member Posts: 1,539
    edited October 2014

    Blessings, sorry I haven't been back.  We're keeping 5-year-old grandson, taking him to school and back, etc, while his 21 month old brother is in the hospital.  (Apparently, it's asthma.)   I'm really frazzled.

    It sounds like your loaner may not be regulating the pressure correctly, or perhaps your mouth is opening and the pressure increases.  Are you still wearing the full face mask?  A pressure of 4 is very light!  My inhale pressure is 15 and the exhale pressure is 9.  

    It should be almost time for you to get your own machine and a new mask.  There are numerous masks, both full face and nasal, and also nasal pillows, which I really like.  If you don't get a full face, you'll need to train yourself to sleep with the tongue pressed into the roof of your mouth and your mouth closed.  Some people actually tape their mouths closed!  The first mask you try may not turn out to be "your mask", either.  Hopefully your DME (where you'll get the mask) has a no fee return policy.  Who will you use as your equipment provider?  I use Lincare, because that's the only one here and I don't want to drive to Charlotte.

    Sounds like you're off to a great start!  Remember, it takes time for most people to find what works best for them.  Wishing you success, and keep us posted!

    Kathy

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Kathy - thanks so much for your response.

    How is your little grandson doing? Kids with asthma are SO susceptible to all those nasty bugs out there... how wonderful you can help by keeping the 5 year old. (We have six grandkids, and I know what you mean.)

    The learning curve has been steep. Tonight is the last night of 7 nights of the loaner machine. I've kept copious notes to help the techs perfect my own machine when it gets ordered. There's a microchip in the loaner, and that will be studied, too.

    It will take about three weeks to get my own machine, and when I turn the loaner in tomorrow I'll request a personal appointment for a different mask fitting. DH loves his Quattro, but I suspect it is one of the more expensive masks, so they don't automatically give it to you.

    I was sent home with a Medium Full Face Mask and a Small Full Face Mask. Apparently I'm somewhere in between the two.

    The Medium absolutely KILLED my cheekbones and made them sore for days. The Small seemed much better until I drooled and broke the seal. I am normally a mouth breather, and it's a toss-up between Desert Mouth and Drooler (thanks, Biotene). My permanent machine will have a humidifier.

    I did get a nasal mask to try, which lasted about ten minutes. My nose was kind of stuffy, I had a fabric headpiece that kept my mouth closed, and I felt like I was suffocating.

    I am a Kaiser patient, so everything is free. We can try on (and keep) as many different brands of masks as we wish. Our supplies come from Apria. We call in for replacements and they are delivered by UPS/FedEx.

    Prayers for the little guy to recover completely, and come home quickly!!!!

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited October 2014

    I got a new breathing machine to go with my sleep  machine,

    it nice cause I can us it while I pump it, but having trouble getting

    new filters and other thing for my CPAP machine. Has there been

    more cutting backs on coverage for them. Thanks for opening this

    CPAP line so I can learn  more and try to get better sleep. I got 4

    hours last night. Praying for all the wonderful people here.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Hi, Footprintsangel

    I have been thinking about you. I did last the 7 nights of trial-and-error with the loaner APAP machine, but it was a challenge at times.

    Part of my problem is that I have Central Sleep Apnea, where my brain does not tell my body to breathe. My pulse oxygen was measured at 86% during the sleep study.

    This isn't great for my brain... I had a Traumatic Brain Injury back in June, and I know the brain needs oxygen to recover. I'm wondering if I might need supplemental oxygen in addition to the APAP machine. I still woke up tired every morning....

    What company do you get your supplies from?

    It's hard to know if coverage is changing... I haven't actually ordered any supplies yet, and what I did get from Kaiser was at no charge to me. 

    Perhaps others can chime in about coverage, and what companies they go through.

    Are you napping during the day? 

    Sunny_Girl says she wears hers even when she takes a nap. I had to laugh... DH got up very early this morning and took my loaner back to Kaiser for me... and then took a nap this afternoon. He said he put on his CPAP just in case he fell asleep - well, he did!

    Appreciate the prayers! Sending up more for you!!!

    xoxo

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    SWEET DREAMS, EVERYONE!

    image

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited October 2014

    I get them thur  different one now because the bid the cheapest

    on the new health care, its called Nationwide. and I am seeing if I can

    get help with the monthly payments cause I have a lot of others

    medical things to buy. Hugs and prayers Debbie

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited October 2014

    Thank You very much for the information, I need to get more sleep

    and its hard when you keep waiting up. I will be looking around and

    to find help before my next appt. Everyone is saying how tired I look.

    My new oxygen machine is helping me much better. God bless You

    Blessings20 and everyone else here. We are so luck we can help each

    out.  Hugs and prayers, Debbie

  • Sunny_Girl
    Sunny_Girl Member Posts: 111
    edited October 2014

    Ola Ladies!!!

    My machine starts at 10 and I push a button and it drops it down to 4 so I can get used to the breathing. I also use nose drops before bed which helps a lot. It works the pressure back to 10 when I'm sleeping.

    Blessings - I hope yours has worked itself out and you have a machine/mask that are perfect for you - well, as perfect as they can be -

    Rest well !!!

    Patty

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    You're very welcome, Debbie - Love and hugs and prayers for you!!!

    ~ ~ ~

    Sunny_Girl - Actually, I'm still waiting for my machine. Surprise, surprise, thanks to an error by a Kaiser physician, I did receive a Quattro Medium mask and tubing on my front porch, delivered by the Medical Supply Company. It was obviously for one of his patients, and he must have transposed a number on our medical records. Of course, it's too big, but my husband can use it.

    There is an absolutely AWESOME Sleep Lab tech I spoke to today, who let me know that no machine has been ordered yet. They are still analyzing the results of the microchip, getting a Pulmonologist to write the Rx for the air pressure details, getting approval from DME (already authorized), sending the request back to the Sleep Lab, and then off to the Medical Supply place to order it. THEN.... wait for UPS to deliver it. 

    Looking at 3 weeks, at least.  But I do have a Sleep Mask Fitting appointment in 3 weeks, since there are so many masks available. It's kind of like buying a bra. You can't tell if it will fit unless you try it on.

    My loaner started at 4, and only got up to 10. (Once it got up to 12.) DH's got up to 24 and said it was like a jet engine blowing into his face. It actually lifted the mask off his face!!!  

    ~ ~ ~ 

    Wishing y'all sweet dreams!!!

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited October 2014

    Mine starts on high and then goes down and when it goes down it leaks

    more and wakes me up  I was told when I tighten it make the level go

    lower. I have not got my paper work so I think I will start calling. Can

    always use and extra one if I get it.  Take care, Debbie

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited October 2014

    I was dx'd with (severe!) sleep apnea in March this year.  I soooo did not want to use the dreaded device and I had a horrible attitude about it.  Hubby has had to use one for a good 12 years and he does all right with it, so I figured if he could, I could  too.  Reluctantly.  I told the sleep tech that I was not interested in anything that covered up my face, so I have the ResMed 9 APAP , the Climate Line, and the nasal pillows.  It didn't actually take as long to get used to it as I thought, and I like that the machine keeps track of how many apnea/hypopnea incidents you have, whether stuff fits properly, etc.  The worst thing is that the hose wakes me up when I roll over (I didn't like the clip thing that pulls it up over my face to the top of my head), and sometimes it leaks.  I also wasn't thrilled about one more thing to fiddle with and clean, etc.  But I even traveled with it on business this past summer, and it wasn't bad at all.  I have a cold right now and I thought I wouldn't be able to use it, but actually, it seems to clear my nose, and the humidity helps.  Check with the technician about the "jet engine" force of the air.  I think mine was set at first to go up to 20, but they had me reset it to 12, and that works for me.  Also, unless you live in a warm climate year-round, I strongly recommend the heated tube (Climate Line).  It doesn't feel uncomfortably hot, but the feeling of the cold air was awful.  The tube just makes it comfortable.  (It does blow cold air if the humidifer runs dry during the night, though).  I used the Ayr gel on my nose at first but I don't need it just for the mask any more. I also use Nasacort for stuffiness, at the recommendation of my doctor.  I'm with Kaiser, and Apria has a contract with them.  I only have to pay 10 percent of the costs, so equipment replacement doesn't cost much at all, and they usually send them overnight.  I sure hope you can get used to it okay, Blessings, and that you come along better!  I joked the first night I used mine that DH and I looked like we were about to do a countdown, both of us with the masks....

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Welcome, IndigoMont11!!!

    Thanks for your suggestions.

    I thought the nasal thingy would do for me, but it lasted a whole ten minutes before I ripped it off my face! (My nose was stuffy at the time, and I hardly got any air at all, except through my mouth, which, of course, defeated the whole purpose..... plus, I'm usually a mouth breather anyway... 

    I hated the dryness of the loaner (no humidifier) and I started to get a bloody nose a few days in a row. I forgot what the AYR gel was called!) Our own machines have heated humidifiers, which DH uses every night, even though we do live in a warm climate.

    DH's personal machine is working out well for him. No more "jet engine" blowing the mask off his face. (That was just the loaner.)

    As for hoses tangling up when we rolled over, we both got hose holders from Walter Drake and they work really well! They're cheap ($19?) vs a bunch more at the Home Medical place.

    This one is from Walgreens for $15.49 online:

    image

    It just slips between your mattresses, and you can put it to the side or in back of you. Makes rolling over a whole bunch easier!

    Looking forward to hearing more tips and ideas!

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Well, I now understand why the Kaiser tech told us about the patient who refused to give up his CPAP loaner after the week-long trial period was over. He slept so much better, he just decided to keep it until his own machine came in. They fined him an arm and a leg for that.

    I wake up in the morning with a pulse oxygen level 88% - 90%, and a heart rate of 58 - 60. I know my O2 levels go lower during the night.... my test results showed 86%. NOT good for a brain recovering from head trauma!

    But today I got a call from Apria, and my machine will be here by the end of the week!!!! WooHOO!

    I go in for a personal mask fitting next Wednesday, and should come home with something I like. The tech is holding two Quattros for me - Small and Medium, and she also said she had lots of other styles I could try. 

    In the meantime, I can make do with the Small Fisher & Paykel Simplus Full Face mask I got with my loaner.

    Here is a question:

    How often do you clean your mask, and with what?

    How often do you clean your hose, and with what?

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2014

    This is my favourite mask in the 8 years I have been using cpap.

    http://www.cpap.com/productpage/fisher-paykel-eson...

    I barely know I have it on. 

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    Thanks, wrenn!

    Will ask my Tech about it next week, and see if I can try one on!

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited October 2014

    Still working on getting thing done, just got my dog home from

    surgery, now its me time. was up and down all night cause of leak and

    then to tight. It is chin and top of head and back of head strap, was very tight

    when I woke up at 3 and the leak was still going. But  I am grateful for each

    time I get a good night sleep.or part of one.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited November 2014

    O.M.G. WORST. NIGHT. EVER!!! 

    I'd gotten a call earlier this week, saying my APAP machine would be delivered by the end of the week. I was soooo excited!!!

    But by last night at 5, it still wasn't here. We made a quick dinner, turned out all the lights, and retreated to the back room to eat and avoid answering the door to trick-or-treaters.

    I snuck out at 5:30 pm, though, and there was my box on the porch - whoopee!

    I got everything set up, thanks to DH who is now an "expert" since he's had his machine for a few months. LOL.

    At 11:30 pm, I put the full face mask on, turned the machine on, and turned out the light. Immediately, I realized that the air pressure was sort of "pulsing" - shooting out blasts of air timed two seconds apart. I am a very slow breather, and sometimes when I was inhaling, the pulsing would become very irregular. 

    I tried and tried to find a comfortable position, but at 2:30 a.m., I had a blinding headache from the headgear, even though the straps were on the loosest settings and yet still hold a seal. 

    And all that pulsating air made me feel like two things: 1) I was on a ventilator, completely able to breathe on my own, but the machine was trying to force me to breathe in a certain pattern, and 2) I was sleeping with some small live animal on my face, inhaling in and out. (You could feel the irregular air and pulsation coming out of the vent holes, and around the edges of the mask.

    So I turned the machine off, took some Aleve for my headache, and read til 6 a.m. this morning.

    Then I found the nasal mask that I hadn't been able to use previously, and decided to try that. The pulsating air was still annoying, but lessened due to the smaller mask. The last time I looked at the clock it was 7 a.m.

    The next thing I heard was the bedroom door opening... it was DH checking on me to see if I was still alive. It was 2 p.m. this afternoon.

    My pulse O2 was 97%, better than the 85-88% I was showing at night, but my heart rate was 55-58. I think that's low.

    Fortunately, I have a personalized mask fitting on Wednesday, and will be taking my machine in to show the tech what is bothering me.

    Does anyone else have these pulsating air issues, or does your machine provide a steady flow of air?

    I thought mine would be steady, and just increase in pressure if I needed it.

    Help!

  • wrenn
    wrenn Member Posts: 2,707
    edited November 2014

    Quite the night. ack. Mine doesn't pulse but then I might just be used to breathing with it. I do find it hard to breathe when the pressure is low so I have turned off the ramp feature (where it starts low and slowly increases). I start off at 13 and am fine. I am glad you are taking it to be checked. When you try on masks make sure you try it with the air blowing and if possible lying in a position you sleep in so you will know how comfortable it is when you are asleep.

    I hope you have things resolved soon so you can keep that great O2 sat. 

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited November 2014

    I'm a CPAP gal since ... hm about 2 years ago.  I was very committed to making it work for me, since I had become aware of constant waking and sleeping, snoring and snorting and each morning I felt like I'd been in a wrestling match.  My first mask was over my nose and mouth since I thought I was a mouth breather.  Actually, I found it pretty easy to get used to and slept through the night fine.  I felt 100% better.  

    I wasn't too happy with the marks the mask made on my face, so then I thought I'd go to a nose only mask.  That worked fine, except when I was on Abraxane.  My nose was so plugged up that I became a mouth breather if I wasn't before.  Luckily, I still had the other mask (don't tell my insurance company), so I went back and forth.  

    Overall, I like my machine, mask and everything.  I would recommend taking something to help sleep at the beginning to get used to sleeping with this whole contraption on your head.  But it didn't take long and I don't use any sleeping aids now. 

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