Need a pep talk (long-ish, sorry)

[wordgirl57]

I'm at a little over three months on CPAP. Once I changed from a nasal mask to nasal pillows, I took to CPAP like the proverbial duck to the proverbial water. The first three months were great, and I'm not doing badly (AHI is usually between 1 and 4 with no leaks, except for one night when I tried out a different, softer bed pillow, which caused leaks and which I quickly got rid of). I do feel like I sleep better on the whole, but of course I know that not every night will be perfect.

However, suddenly in the last few weeks I've hit a rough patch. My numbers are still the same, but there are occasional days when I don't feel rested at all. I'm doing what I can to alleviate the problems--ordered new nasal pillows because the old ones were getting mushy, and have started on Flonase to keep my allergies at bay. But whereas most nights the first three months I was sleeping peacefully through the night, now about half the nights out of the week I have to get up to go to the bathroom two times or more. I've cut back on my nighttime water drinking, but it doesn't seem to work every night (that's one of the symptoms that sent me to the doctor in the first place; I thought it was just me getting older, but she realized my sleep quality was bad and sent me to the sleep clinic).

What's worse is that, all of a sudden, I resent having to use the CPAP every night. I don't look forward to going to bed, because I feel like I have to twiddle with the nasal pillows endlessly to get them seated (I do wear the right size for me, XS, but some nights they just don't feel comfortable). Then once I lay down to sleep on my side (which is still an unnatural position for this former stomach sleeper), I can't get comfortable with the mask on no matter what I do. I loosen it, I tighten it, I tug at it, but it just makes me want to scream to have to wear it. The pillow that the nasal pillows are mounted on makes my upper lip sweat and that and my nose seem to itch constantly under the silicone, although I keep the mask very clean. And suddenly I hate that stupid hose hanging down off my nose and laying across my body, whereas before, I had no problems with it.

I'm honestly not trying to whine--I know that the machine is saving my life, and I am truly grateful that there's a way I can get better sleep. And I also know that all my little peeves are solvable, so I'm really not looking for solutions--those are all available on this site, which I read regularly. What I guess I'm looking for is reassurance that this is just another phase in the CPAP process--that it's normal, once the honeymoon period is over and the newness of finally being able to sleep wears off, to have a period of time where you resent being tethered to a CPAP machine for the rest of your life. Has this happened to others?

Whew. Thanks for letting me vent, if nothing else. I know this too shall pass, but I'd really rather it be sooner than later!

[elena88]

hi there..
so glad you had a good start...

as for your rough patch.. mmmmm, Im thinking your nasal pillows should not be so hard to get situated..

I was told with the fx, that mask loosens, so you have to tighten up your straps accordingly.. perhaps its the strap that
needs to be fussed with a bit more?

potty trips, mmmm, so many maybe not getting as much therapy as you should.. maybe some mouth leaking, or noses too plugged up?

is your mouth every dry in the morning? do you use a chin strap or tape?

I have the swift fx, its great, I have taped my mouth a lot and sort of trained myself not to open it..

but allergies.. yuk, yes.. I know the difference might be that we hit allergy season, so that weedy patch that sprung up...
THAT just might be your rough patch, if thats it, youll have smooth sailing again..

Use the usual allergy stuff you have used in the past, or talk to your doc about best thing to do for allergy problems and nasal pillows.
(and dont eat too soon before bed, acid reflux and OSA are first cousins, they LOVE to cause trouble together, little minxes!)

good luck!

elena

[Janknitz]

I love my FX and get great results with it, but sometimes I have a string of nights like you are having too. I find it helpful to have a different mask to use for a few nights and get a "vacation" from the Swift FX. 2 or 3 nights and I'm happy to switch back to my FX, and it's great again.

I use a homemade hose management system to suspend the slinky hose over my head. I can't stand to have the short hose hanging down across my chest and having to deal with it when I decide to turn onto my back or other side. The hose management system keeps it up and allows me to move without having to place the hose. That helps keep those bad nights few and far between.

[sunnyway]

It took me about four months (and a dozen masks) to get adjusted to using a CPAP, but I finally found contentment with the following:
1. Respironics FitLife total face mask- it doesn't rub on anything, doesn't squeal, and is not claustrophobic despite its size, because it's clear. It's like wearing a fighter-pilot mask. I slap it on and I'm ready to SLEEP!
2. CPAP Cap (the original) prevents leaks at the top of the face mask, and holds my chin up.
3. CozyHoze BOSS Hose Management System to keep the hose out of the way.
5. Fleece hose cover, to prevent rainout.
6. Aromatherapy with Pur-Sleep essential oils.
3. Contour CPAP pillow, lets me sleep on my side.
7. Lunesta at bed time to help me go to sleep. I've used it for years with no side effects.
8. Nuvigil in the morning - it is finally approved by the FDA for OSA. I feel awake and normal during the day.

Oh, and I have a Tempur-Pedic mattress and a down comforter, too, but had them before CPAP days.

Don't give up. You will find the best combination solution for yourself and you will feel better.

[jazzer4]

sunnyway....Nuvigil in the morning - it is finally approved by the FDA for OSA. I feel awake and normal during the day.

What is Nuvigil?

[lbw]

I use Opus 360 nasal pillows. It does not rest on my upper lip which my nasal mask did and drove me nuts. The opus mask lets you attach the hose to the top or side straps. I can even lie on my stomach. Not unusual to have some restless nights. Have you tried taking a gravol? Can make you sleepy.
Hang in there

[dave21]

However, suddenly in the last few weeks I've hit a rough patch. My numbers are still the same, but there are occasional days when I don't feel rested at all. I'm doing what I can to alleviate the problems--ordered new nasal pillows because the old ones were getting mushy, and have started on Flonase to keep my allergies at bay. But whereas most nights the first three months I was sleeping peacefully through the night, now about half the nights out of the week I have to get up to go to the bathroom two times or more. I've cut back on my nighttime water drinking, but it doesn't seem to work every night (that's one of the symptoms that sent me to the doctor in the first place; I thought it was just me getting older, but she realized my sleep quality was bad and sent me to the sleep clinic).

What's worse is that, all of a sudden, I resent having to use the CPAP every night. I don't look forward to going to bed, because I feel like I have to twiddle with the nasal pillows endlessly to get them seated (I do wear the right size for me, XS, but some nights they just don't feel comfortable). Then once I lay down to sleep on my side (which is still an unnatural position for this former stomach sleeper), I can't get comfortable with the mask on no matter what I do. I loosen it, I tighten it, I tug at it, but it just makes me want to scream to have to wear it. The pillow that the nasal pillows are mounted on makes my upper lip sweat and that and my nose seem to itch constantly under the silicone, although I keep the mask very clean. And suddenly I hate that stupid hose hanging down off my nose and laying across my body, whereas before, I had no problems with it.

I can relate to what you're going through, I've been in similar situations some nights myself. First thing I would say is you're probably not tired enough. Make sure you're tired when you go to sleep, try to divorce your mind from work or any other hassles. An active mind keeps you awake, when I'm awake like that I constantly believe the pillows aren't sitting right or the head gear is too tight then too loose and keep adjusting it. The best thing to do is when you know you have what you think is a good fit, e.g. what you have been using for a while, don't change it. For me that's the worse thing I can do. I then keep changing it until I think I will get the ultimate comfort level but that never really happens.

Thanks
Dave

[kteague]

Maybe you'd benefit from pursuing a way to make tummy sleeping work for you. There's other stomach sleepers on here who are making it work for them. I've read of some doing a modification called the Falcon position. Could be you've finally "caught up" on your sleep so no longer are so exhausted that you could sleep thru anything. I personally would hate to have to change my normal sleeping position as I can just imagine how odd that would feel.

[echo]

I too can sympathize. One likely culprit is that you have started mouth breathing or mouth leaking. Elena said it well. Do you have dry mouth? Mouth breathing can also make congestion worse. A full face backup mask is a good idea anyway, for those nights when you have a cold or horrible congestion.

[needanap]

Well it's interesting to be reading your post...because I'm facing the same thing. I've just passed the two month time when my numbers had to be reported to the DME store for compliance for insurance payments. Now that no one is looking over my shoulder and keeping track of my compliance, the CPAP seems to be bothering me and I take it off sometimes around 4 AM. And I'm having trouble getting to sleep, which is new. Maybe new nasal pillows would help - I will try that. So, no, you're not alone. I do know from reading this forum that there are ups and downs with this journey we're on.

[JohnBFisher]

sunnyway....Nuvigil in the morning - it is finally approved by the FDA for OSA. I feel awake and normal during the day.

What is Nuvigil?

Think of Nuvigil as a drug without caffeine that acts similar to caffeine (without the adverse side effects). NuVigil and ProVigil are similar drugs.

[SharonC]

I have only been on APAP for 4 nights now but my husband put an old very light luggage carrier we had between the box spring and mattress at the headboard. We velcroed an old "pant hanger" with the straight edge of the hanger along the handle of the luggage carrier. It had the hook and my hose doesn't come near me. It was a cheap and efficient way to keep the hose off me. Then I hang my mask on the hook during the day.

[wordgirl57]

Thanks for the encouraging words, everyone. I'm so glad to see I'm not the only one who has experienced this.

I'm sure I'm not having any problems with mouth leak; I sleep with my mouth closed and never have a dry mouth or anything like that. I've even had my husband watch me while I'm sleeping to be sure, and he says everything's closed and quiet, although he can tell when my nose is stuffed up because the nasal pillow on the stuffed side whistles on exhale. August has been really bad here in Michigan for everyone I know who has allergies--my dad works at a drugstore and says that their allergy medicine section has been almost cleaned out for the last month. So I'm sure that's part of it.

I'm wondering if Dave21's comment about not being tired enough isn't right on the nose (heh), as well. Last night after a very busy, exhausting day (lot of driving, went to an outdoor wedding shower, out to dinner, then to a local casino) I went to bed at 11:30, fell right asleep with very little twiddling, and slept straight through for nine hours without getting up once--and my AHI was just 1.3, showing 0 leaks. I've always had a hard time shutting my brain down at night, so I guess I'll just have to work harder at it. Starting Tuesday, I'm scheduled to go back to working out at my local Curves again (couldn't exercise for the last 10 days due to a heel injury), so maybe that will make me tired enough to drop off every night.

I also figure it can't hurt to have more than one mask on hand, as Janknitz mentioned, so I think that when my six-month mask reorder comes up, I'm going to check out that Opus 360 mask. I much prefer the freedom of the nasal pillows, so I'd rather exhaust all possibilities before changing mask styles.

Again, I really appreciate the replies. Every little bit of information helps, believe me, and I can't thank you all enough!

[elena88]

Hi,
I also have the opus 360, and the pillows are a bit more sturdy.. (not as soft though, so slight trade off, but once there in they are in)

I have been trying to keep track of why I get congested and my nose plugs up.. I have found whatever side I sleep on THAT nostril is
plugged up completely.. so its hard to get therapy with one nostril not working..

I can sleep on my tummy with the opus, but you have to use about three pillows to prop yourself up..
do not face plant with the swift fx though!

See if you can sleep on your tummy again and try the opus

Im actually going to try a no no and sleep on my back to see if it helps the congestion..

its always something! But then it usally gets figured out too, so hang in there!

elena

[SleepyT]

...What's worse is that, all of a sudden, I resent having to use the CPAP every night. I don't look forward to going to bed, because I feel like I have to twiddle with the nasal pillows endlessly to get them seated ..... And suddenly I hate that stupid hose hanging down off my nose and laying across my body .... What I guess I'm looking for is reassurance that this is just another phase in the CPAP process--that it's normal, once the honeymoon period is over and the newness of finally being able to sleep wears off, to have a period of time where you resent being tethered to a CPAP machine for the rest of your life. Has this happened to others?

Yes...in a word. Many of us go thru total resentment even as we are grateful. It is a weird thing to have to accept...but hopefully you will come to complete acceptance. I recently told someone CPAP is the one of the few "habits" I have actually stuck with...100% compliance. You know how it goes...you start to exercise and then quit...or start a diet and then quit...but CPAP is important enough to start and NOT quit...but it is STILL a habit we have to train ourselves to and I think we can feel resentment for having to use it each and every night for the rest of our lives...even if it is saving our lives. You sound normal to me...

Don't worry....I bet you'll get used to it...