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Sleep Health Community; Multiple Sleep Disorders


#1

Hi! I’m not new to CPAP use. I had been using a Fischer-Pykel Icon Plus CPAP machine, which I loved, for 6 years before it quit working. I just finished a new set of sleep studies to qualify for a new machine & my sleep doctor prescribed a Resmed AirSense 10 For Her CPAP machine, which I also like because of the information on the screen of the machine that also gives me a summary of how I slept in the myAir app. What I don’t like compared to the F-P Icon is the water reservoir, which was far easier to fill up & place into the machine. The Resmed AirSense 10 For Her’s water reservoir is easier to clean, though, I must say.

I have always used, until recently, the Swift FX For Her headgear (which really is the exact same headgear as the regular Swift FX headgear with blue strap & grey pads (I put one on top of the other & they’re exactly the same size; it just has pink head strap & pads instead of blue & grey, so don’t be fooled) with size XS nasal pillows, which have been still too big all along, but I continued with them because I felt a face mask would make me feel claustrophobic & my sleep doctor & the DME I order supplies from never have mentioned any other option until now. The XS nasal pillows caused nasal ulcers that were very painful & gave me nose bleeds. I experienced permanent irritation & redness completely around the lower area & sides of my nose due to silicone sensitivity, which has continued & I have to use Lidocaine Gel 2% & Mupirocin Ointment inside my nose & around the outside of it before I put on my mask at bedtime & 2 other times throughout the day (these are prescribed by my ENT, who has also performed a turboplasty & straightened out my deviated septum. He has also prescribed Pantoprazole for Silent GERD, which is common in sleep apnea & overweight patients, but I’m losing weight & have dropped 50+ lbs in the last year & the ENT says the GERD has improved markedly). The nasal pillows also stretched out my rather fine, thin nostrils & half my nose, & I now have what looks to me to be a wide piggy-nose, which made me feel self conscious when added to the permanent skin redness & irritation around my nose (family, the only people who can be totally honest & don’t seem to care about rudeness have asked me what’s going on with my nose as it’s changed shape over the past 6 years since my son’s wedding in 2011 & with the redness & frequent nose bleeds). I also woke up with strap marks across my face that would take hours to disappear & found others to seem somewhat distracted by them. (I’m not unattractive by far, but these problems, coupled with previous weight gain, have really caused a blow to my self-esteem.)

When I got the new CPAP machine, I continued to use the Swift FX For Her headgear & Swift FX XS nasal pillows up until a week ago when I mentioned these ongoing problems to my sleep doctor at my latest “face-to-face” appointment, which qualified me for a new CPAP machine. My sleep doctor really is an excellent doctor & would have intervened way before now had I mentioned it, but I didn’t because I thought the only remedy would be a full face mask & I didn’t want to go there. He’s also a pulmonologist & he treats me for asthma & chronic bronchitis, too. I also see an immunologist/allergist & get 2 shots (1 in each arm) monthly for molds & pollens. My allergies are pretty severe & have made my asthma hard to manage, which only worsen the sleep apnea, too. I seem to get a pretty bad case of bronchial pneumonia every year since 2010, which has caused lung scarring. Some winters, including this past winter, I had 2 separate bouts of it & the 2nd bout this winter was so bad I really thought I might die. I only see him once a year & am so glad that newer, smaller nasal masks have finally come on the market.

So, he suggested I give the Resmed Airfit N20 Nasal Mask a try & I was fitted with the mask by his mask specialist, who also adjusted the straps to fit properly & made sure I wouldn’t experience mask leaks whichever way I laid my head. I’m still having ongoing problems with silicone sensitivity around my nose, but since switching to this mask the ulcers inside my nose & the nose bleeds are getting better. I just discovered mask pads this weekend & ordered several reusable sets from PadACheek. I’m very much looking forward to trying these out & hope they will really help with the silicone sensitivity, irritation & redness.

I’m now having a dilemma with this new mask in that when I put it on at bedtime, the CPAP machine registers a “Good Fit” & I can feel that the mask is secure & not leaking or making any noises, but when I wake up, the machine registers an unhappy face, telling me to adjust the mask & the myAir app has been giving me very low scores for mask seal & thus overall scores in the 60s. The AHI has remained consistently low with this mask, which is why I’m confused about what’s going on with this mask. I tried tightening the mask straps to see if that help, only to wake up with deep red dents on the upper sides of my nose where the upper part of the mask touches my cheeks & the silicone sensitivity has now developed in that new place. Even with doing that, I was still getting contradictory messages on the machine & app & because it was uncomfortable & leaving the deep marks around my nose, I loosened the straps back to where they had been before & the messages haven’t gotten better or worse whether they’re tighter or where the mask specialist adjusted them to. I tried using a chin strap to see if the leaks might be an indication of mouth breathing, but still got the same results. I just don’t understand what’s going on here!

I’m still waking up feeling unrefreshed even with CPAP all these years, but I blame that on having fibromyalgia & arthritis pain, chronic fatigue syndrome & now the addition of Ambien (1/2 of a 12.5 mg tab) to my bedtime regime. It was prescribed to treat chronic insomnia & circadian rhythm disorder. I have tried sticking to a sleep routine over the years, which is difficult to do with CI & CRD, & have tried every other sleep medication on the market over the years, including tricyclic antidepressants & the new medications for people with CRD caused by blindness, still without success (these 2 types of meds specifically necessitated having to take Nuvigil to wake up & get going, & to lessen the effects of what my neurologist now thinks is narcolepsy. (Great! All I needed was another sleep-related disorder!!!) I’ve asked her whether or not it could just be a culmination of all the other sleep disorders combined or if it’s another component sleep disorder contributing to my crazy sleep problems. She’s not 100% certain which it is, even though I’ve been through scores of tests (neurological & further sleep studies) over the years. Since starting on Ambien though, these conditions haven’t gotten any better or worse than they were before. I’m no longer taking Nuvigil in the morning because, truthfully, it wasn’t working all that well & seemed to make the CI & CRD worsen, stretching the amounts of time spent awake & asleep to even longer than they had been before. While on Ambien my sleep seems deeper & I definitely fall asleep faster & stay asleep, & after waking up to go to the bathroom or to take medication on schedule, I’m able to fall right back to sleep. It seems to be the only medication that has really worked for me in those regards & I haven’t developed a tolerance for it that requires upping the dose like so many other people have reported. I’m still waking up unrefreshed after sleeping long hours (sometimes up to 18 hours straight). And I feel pretty hungover sometimes & have had to cancel plans because I wouldn’t dare drive in this state. (In fact, I don’t drive at all anymore. I certainly don’t need to get a DUI & I wouldn’t think to endanger other people on the road.) I don’t want to try lower dose because it’s working so well at this dose for the most part; I still have problems falling asleep sometimes even while on it. I still have an erratic sleep schedule & nothing (sleep schedules or medications) seems to really help me with that. I don’t know what the answer is for my CI & CRD/narcolepsy problems, but living in the Southwest Medical Center has afforded me some of the best doctors to work on solving them.

I would like to pose several questions to this forum:

  1. Have any of your experienced contradictory messages between the CPAP machine & the myAir app in that the CPAP machine reports a “Good” seal, but the app says you have a major mask leak & need to adjust the mask? &
  2. Does it ever seems that the time slept is being reported erroneously on the machine & thus the app? There have been times I’ve slept way, way longer than the few hours the app has reported. Once I woke up & the machine said 11+ hours & in a flash of the eye the machine registered 0.02 hours, which is what was reported in the app. I went on Resmed’s myAir.com to see how exactly how it records the time slept, meaning does it record from 12AM-11:59PM, or record the hours on the day I fell asleep, or on the day I wake up? This information is nowhere to be found on their site. I had to email them twice to find out (they didn’t really answer my question the first time). What I finally found out is that the app reports from 12PM-11:59AM, but that information hasn’t changed the fact that I sometimes get erroneous recordings on the machine & app. Maybe I need to keep a separate journal to record my time.

Have any of you experienced either of these problems & what did you have to do about them? Is my new machine possibly a lemon & needs to be replaced? I’ve had it since the end of November 2017; is it too late to get it replaced?

I really look forward to y’all’s help. Thank you.


#2

I believe the normal replacement of a cpap is 5 years.


#3

I have same machine. No probs with reportoing so forth just havent found right mask yet and wake up looking as though 12 mos preg bc the air went into my stomache


#4

You might try sleeping on your right side. This can help with bloating.


#5

Thank you. I already knew this (though others might not) & Medicare & my DME had previously told me that a machine should last 5 years “at least,” but also said that “unless your doctor has recommended a new CPAP machine to treat your condition, & seeing as I would have to go through new sleep studies & additional doctor appointments to be qualified for a new machine, that as long as the machine I already had was treating my apnea acceptably & continued to work well, there was no need to replace it.” & It had been working really well (not a single sputter) over the entire 6 years I used it.

It started not working correctly only after I had knee replacement surgery & the electrical staff @ the hospital have to certify all electronic health equipment you bring into the hospital for patient use BEFORE it’s ever allowed to be plugged into the wall. Just a few years ago at another admission, the hospital electrical staff also screwed up a recently purchased (slightly more expensive than usual) blow drier that had been working perfectly fine beforehand. I don’t know exactly what tests they perform (if in fact they actually do), or what it is they need to do to “certify” equipment, but this is the 2nd thing I’v brought to the hospital that “someone” seems to have screwed up. I wasn’t feeling particularly trusting of them to bring my CPAP machine into the hospital as it was due to the prior experience, & they haven’t reimbursed me for the expense of either, much less extra expenses related to this last incident. I only brought it because my surgeon insisted that I do.

So, after the recovery room, where you’re still on oxygen, & I had just been delivered to my room, I had put the CPAP mask on & pressed the button to turn it on & Nothing!!! The machine wouldn’t turn on & before I even realized it, the nurse started turning the dial on the front this way & that & poking it in & out. I asked her to stop immediately & asked her if she had experience with this type of CPAP machine before & the dodo told me I was “the first patient I’ve ever encountered with a CPAP machine”(!!!) I asked her why she would even think to mess with an expensive piece of equipment (& told her how much they cost; she had no idea, but I’m sure she won’t forget), if she had absolutely no CPAP experience at all (I’m quite certain I sounded very peeved with her) & she didn’t have a response for that, but sheepishly said “I’ll ask electrical to come up to see if they can figure out what’s going on.” I wasn’t really sure I wanted that, but asked her to ask for whoever it was that “certified” my machine to be the one to check it out & see if they can figure out what’s going on. They don’t get these machines very often, per the admission clerk, so I’m quite sure whoever it was that “certified” it would know who it was we were requesting be sent up. Wouldn’t you know, that even though the nurse told me she relayed the request, & she said, as did other nursing shifts including nursing supervisors, that they indeed put in the request a number of times, but no one ever showed up? This really didn’t surprise me as it seems to me that people not owning up to their mistakes or trying their best to remedy the situation have to be rare birds if they think they might get in any sort of trouble at &/or lack the ability to deal honestly with customers. There’s a lack of accountability that seems to have become so pervasive.

Not only was I not happy at all about what had happened, but my doctor was really upset & concerned that I wasn’t on the machine already when he arrived for evening rounds that 1st evening & thereafter (& I’m pretty sure he let the staff know it & requested them to ask electrical to visit after each & every visit). That 1st evening I heard him tell the same nurse & her supervisor that he certainly didn’t want a patient with sleep apnea to code after he performed surgery with lengthy anesthesia & certainly not for my own sake. This didn’t freak me out as I’ve had many years working in the medical field beforehand & know what the risks are, & because I trust him implicitly as he’s been my orthopedist for 25 years now, has seen me through a lot of injuries (mostly from running lengthy distances 7 days a week & other sports injuries) & because he’s performed other surgeries on me before, all with excellent results & no side effects (other than killer pain after a prior extensive knee arthroscopy; the pain from this surgery was pretty bad, too, but absolutely no pain whatsoever now. It was really worth it in the end. 1 knee down & 1 more to go, possibly towards the end of this year, though this next time I’m going to use another hospital he has privileges at, too. Both hospitals are equally as good, but I’ll get a private room at this other hospital & I haven’t known them to screw up any of my or my family/friend’s electrical devices before.

Other than the fact that someone had screwed up a perfectly fine piece of expensive medical equipment because they obviously didn’t know what the heck they were doing & wouldn’t take responsibility or even come see if they could fix it, the other thing that had me really upset about the whole thing was that I had already realized I wasn’t prepared or able to make other doctor visits or have sleep studies while I was recuperating in hospital (4 days), the rehab hospital (2 weeks there) & with going to PT 3 times/week for at least 8 weeks, & just with the exhaustion one experiences the first few months after surgery. I live on my own & don’t have family living close; like my closest friends, they’re all scattered across the State of Texas. We Facetime a lot & see each other as often as we can, but it’s hardly convenient to ask someone to drive hours back & forth just to help me with sleep studies & extra doctor appointments because they’ve got jobs & families & social obligations, too or are feeling unable to help themselves, & I even though I have friends here, they’re not so close that I would feel comfortable imposing on them for this (especially the part where I go home shortly after 5 am the morning after the sleep study). I hadn’t planned on this possibly of this happening. I had already made arrangements for the rehab hospital to pick me up & deliver me back home for PT, & had already done my stocking up on groceries & would use an app for other groceries & medications I might need delivered while recuperating, so I thought I covered my bases well for this surgery & hadn’t anticipated that I would need to go anywhere else until until I would be well enough to trust myself walking & driving with this new knee.

What I finally did was contact my DME to try to get the machine fixed & then had to pay out of pocket to rent a machine for a couple of months until I was able to do the sleep studies to get qualified for the new machine. The DME said they weren’t able to fix it, but I really wonder if that’s because they really wanted to sell me a new machine instead. I just don’t really believe a machine Ithat was working perfectly well up until someone messed with it, would just crap out as soon as these bozos touched it unless they accidentally did something to it & don’t know exactly what they did. I’ve traveled with it extensively, too, over the years, & though you might say it’s time was up, it had always performed perfectly up until that instant. I still have the machine & am going to see if another DME can fix it, letting them know I already have another machine but just might start ordering my supplies from them if they can get it fixed. That way, I’ll have a backup just in case it’s needed.


#6

My4Angels & MotherT,
Thank you both for answering.

My4Angels, I didn’t see your post first, sorry; that’s why I hadn’t replied to your comment yet. But here goes: What kind of mask are you using or have used in the past? What did you like or dislike about each one? I really like the idea & ease of the nasal pillows, but for me the Swift FX XS was still too big & I’m not aware of others brands sizes other than the nasal pillows I used initially when I first got the Fischer-Pykel, those didn’t even come in a XS at that time, though they might now. Please let me know your thoughts on masks you’ve used as the opinion of another woman would be so appreciated.

MichaelT: I sleep equal amounts of time pretty much on both sides & on my back. Having fibromyalgia, osteoarthritis & back/neck injuries to my entire spinal column from a previous injury made me reconsider my sleep options. I realized that we spend about 1/3 of our lives sleeping, so I upped the importance of my mattress & pillows & bought a Sleep Number Bed with the extra memory foam topper, added another memory foam layer between that & my mattress pad (have replaced both the mattress topper & the extra memory foam layer several times over the years), as I realized I actually felt like the Princess & the Pea, a really good Stearns & Foster mattress pad that adds some tightness on top to keep the foam pad from shifting, & lastly, have invested in multiple Tempurpedic Memory Pillows over the years.

What I realized just the other night & last night is that when I lay on my right side only, I often will hear the air leaking out the side of the mask & have to adjust the fit between the arms & the pillow to get it to stop. This bums me out because I feel most comfortable sleeping on that side because of a neck/shoulder injury on the left side that has left me with bursitis on that side & on most nights I experience some pain from sleeping on that side. Sleeping on my back is OK, but if I’m suffering sinus problems, that can cause drainage that then makes me have a somewhat sore throat the next morning & can set me up for bronchitis if it leaks into my bronchial tubes, which I avoid like the plague as it usually leads to bronchial pneumonia most times. So if I don’t wake up from hearing the air leakage noise, this could very likely be why I’ve been getting such bad Mask Fit numbers. I slept something like 20 hours from yesterday afternoon to this morning due to a fever with a virus & since I had realized what was going on, I made mask adjustments if I woke just enough to be aware that I was flipping sides (which is pretty often because I sleep with 2 pillows between my legs & have to move them every time I change position. So today I finally had a pretty good score, though not perfect yet.

Have either of you used nasal mask pads before? I’ve got some on order to help with the silicone sensitivity on my very sensitive skin & am wondering if they might help or hinder the situation. If either of you have an experience or an opinion on this, I would appreciate hearing from you again.

Thank you again for your help.


#7

I have been on a cpap for 15yrs and an ox concentrator. My sleep mapper quit last night and has off & on wi th long periods in between times. To have it repaired, it must quit during testing, (It never does), The mask that I have is a dud as all of the masks. WHY?? There are mattresses that are form fit, why not a mask? I am truly tired of looking like a resemblance of m y mask in the morning. GOOD LUCK!