FED UP & AT WITS END!

Dolphin · Post by **Dolphin** » Sat Oct 06, 2007 11:46 pm

aka Carol

I am completely fed up now with this machine. The 1st month was perfect, slept thru night and awoke after say 8hrs sleep straight refreshed and energized. Now, I can't sleep with/without machine. It now 3am and I am so tired and frustrated I just feel like throwing in the towel. Don't give me any of the reasons i need to continue to use cpap as I already know the neg effects on the body with sleep apnea. I "DON'T need a lecture.I have tried everything from changing nasal masks, not using humidifier. I can't figure out whats going wrong. As stated earleir, the 1st mth was perfect, no problems whatsoever.
Sorry I just had to vent as I am very upset and writing this thru tears.

wabmorgan · Post by **wabmorgan** » Sun Oct 07, 2007 12:30 am

Sounds like you have NOSE problems:(

My next question.... Have you seen an ENT????

Slinky · Post by **Slinky** » Sun Oct 07, 2007 12:44 am

According to your profile you have the Respironics Auto. Its a good machine. It doesn't make sense that the first month went great and now it is unbearable. Were your pressure settings changed?

Any ideas at all as to what the problem is? Why did you change masks? The sleeping problem occurred before or after the mask change. Are your nasal passages too dry or irritated and sore? What?

Have you contacted your sleep doctor about the current problems you are having with sleep and your xPAP? I assume, given your mask changes, that you've talked to the DME's RT about not being able to sleep now after the first 30 days going so good.

But you do have to be more specific about WHY you can't sleep w/the xPAP anymore if you expect anyone to be able help you out.

Dolphin · Post by **Dolphin** » Sun Oct 07, 2007 5:15 am

I know I wasn't specific but I was just upset and frustrated. Originally I did have surgery about a year ago to open my nasal passage which worked for awhile but then snoring returned. Dr suggested removing uvula and partial pallet as I have no tonsils but declined knowing if I do have sleep apnea, that may not work. From what I've read there is no cure, only treatment with cpap. When I fist used machine it was with the f&p nasal mask (grey foam) inside. At 1st chafed bridge of nose so used mole skin as padding , and loosening up mask. Into 2nd month still had sleep concerns. Waking up early, going to other room to sleep, falling back to routine before cpap treatment. Due to the discomfort of nasal mask, RT gave me another one called "ComfortGel" (blue gel) inside. It's much more comfortable but now I have rainout which I did with other mask just before I switched. Some here in group suggested to turn heat up in room as the air inside tubing is warmer and air in room cooler causing this. That does not work as I am always warm and need the fan going to keep me cool. Sorry for long explanation. Hope it clarifies my situation.
Thank-you
Carol

kteague · Post by **kteague** » Sun Oct 07, 2007 6:34 am

Carol,
When you wrote Fed Up & At Wit's End I envisioned a long pier with a sign saying "Wit's End". Must not have got enough sleep last night as usual (so you might want to consider that when listening to any advice from me).

But about the rainout - is your machine sitting lower than your mattress level? That's usually a help. Keeping the humidifier setting at the lowest comfortable setting for you is another thing. Others on here love a heated hose, I personally don't like very warm air up my nose. Lastly, rather than heat the room, add a buffer between the temperature differences that cause condensation by putting a cover over your hose. They can be purchased as such, but for a quick fix, pick up a package of long socks at the dollar store (skinny ones stay in place better - I once used girls winter knee hi socks), snip the toes out, and thread them over your hose.

Hope at least one of these tidbits helps.

Kathy

RosemaryB · Post by **RosemaryB** » Sun Oct 07, 2007 6:52 am

Hi Carol,

The good news is that you know it can work for you. The bad news is that it may take some adjusting to get it to work for you.

I use the Aussie Heated Hose. I had horrible rainout at first. I sleep in a cool room. The Aussie hose works for that. I tried wrapping the hose using polar fleece and a snuggle hose cover. That helped a slight bit, but not enough. Here's the website:

http://www.sleepzone.com.au

I've also tried quite a few masks. I overcame problems with mouth leaking due to puffy cheeks and aerophagia. Then there were the red marks on my cheeks that were unacceptable to go into work with. Then there was the side sleeping issue.

I'm not bragging here, nor complaining. What I've realized with all of this is that getting it to work takes some experimentation and changing. Conditions change (like temperature and humidity), my body changes, like sometimes my skin is more sensitive than others, or if my acid reflux gets worse, I'll have worse aerophagia.

If you are sleep deprived it's easy to get depressed. Just keep working at it and log in to this board for help with all the fixes. Read the lightbulb at the top of the page, especially the "All LINKS BY RESTEDGAL" under "Help for new or struggling cpap users" and you will find the answers to many problems.

Wulfman... · Post by **Wulfman...** » Sun Oct 07, 2007 7:39 am

Sounds like a mouth leaking/breathing problem to me.

Ever wake up with a dry mouth?

Have you tried sealing your mouth shut? (Tape or Polident adhesive denture strips)

Do you have a full face mask to use?

What's your pressure or range?

Have you tried using cool (pass-over) humidification?

Den

Slinky · Post by **Slinky** » Sun Oct 07, 2007 8:30 am

Occasionally you will have to change the setting on your humidifier higher or lower depending on the weather in your area to avoid "rain out". Some times you may even want to turn it off entirely.

Setting your CPAP and humidifier lower than your mattress level as suggested can help.
So can taking your hose under the blankets with you.
So can hanging your hose above your head. Plenty of fixes posted here to do that.
Making your own hosecover from thick socks to fancy print material of various colors to suit your mood or decor or buying ready made hosecovers or the Aussie heated hose all work well for rain out.

In addition to the Yellow Light bulb there are tips under the Red Ball w/the Question Mark. Scroll down the page, one of them is Mask Fitting. No help for the nasal pillows but plenty for the various nasal and full face cushion masks.

You were wise to pass on the Uvula, soft palate surgery!!! I can't imagine that I would consider it under any circumstances!

Hang in here w/us. Be as specific as you can when you run into a problem. There is almost always someone here who has encountered the same problem and found a "fix" for it.

BarbarainCT · Post by **BarbarainCT** » Sun Oct 07, 2007 2:26 pm

I have found that my sleep is not nearly as good in the summer with higher temperatures and higher humidity. I have turned my humidifier down to "1" and that has eliminated the rainout (my machine has always been below the top of the mattress).

I can hardly wait for winter when I can keep my bedroom at 60 degrees again.

Barbara

DBoone · Post by **DBoone** » Mon Oct 08, 2007 10:56 pm

Carol,

I'm almost as frustrated as you are. Hang in there, I'm pretty sure it will get better.

At least I really hope so. I've only been on CPAP for about 6 weeks and my frustration is mostly that I still haven't seen any benefit. After 3 weeks with a leaking mask I replaced it with one that is fairly comfortable most of the time. Even so I'm having trouble falling asleep and staying asleep. I'm online now because I couldn't sleep. <sigh>

The last few nights I've been trying the Polident strips in combination with a chin strap and I'm pretty sure that my mouth is still leaking.

Anyway, you're not alone and this seems like a pretty good place to vent (maybe it's whining in my case) and get some advice or at least a shoulder to cry on.

ozij · Post by **ozij** » Tue Oct 09, 2007 2:24 am

Carol,
Clearly you therapy is still not as comfortable as it can and should be.

Rainout can be extremely disruptive -- here's how I handle mine:

1. I bought the heated hose (like RosemaryB said, http://www.sleepzoned.com.au).

2. I also need a hose cove on top of that - the heated hose is not enough in my case.

3. In the winter, when it's cold here I cover the narrow hose that comes from the mask with two layers of finger gauze.

4. And the amount of heat (and humidity) I need depends on the weather.

I also find the exactly how the mask dangles down from the hook in the wall has a surprising impact on my ability to get a good fit.

O.

SleepGuy · Post by **SleepGuy** » Tue Oct 16, 2007 9:22 pm

dolphin, just wondering how you're doing. You got some good advice on the forum. I've been where you were--I had all but stopped using my cpap after the third year. Hang in there--keep at it. You'll find something that will help. For me one of the biggest things was for my body to adjust to exhaling against the pressure. Now it feels just like breathing without the cpap. Of course my pressure is only a 9.....

Best Wishes!

Dolphin · Post by **Dolphin** » Wed Oct 17, 2007 2:22 am

Hi SleepGuy,
I'm still going at it but still have rainout. I even tried cpap without humidifier and still get rainout. I am going to try to get some sort of sleeve to go over tubing to see if that helps. In meantime I have "new" M series auto with a-flex and humidifier. I find very loud compared to the one I was renting which was Remstar auto c-flex cpap with humidifier. Not sure which one is best and need to decide by friday on one or the other. I will not get another one for 5yrs. Already looked at reviews and still new to all this. I did post for opinions and will check them later.
Take care SleepGuy
Carol (aka...dolphin)

FED UP & AT WITS END!

FED UP & AT WITS END!

Fed up & Frustrated!

Rainout

Rainout!