Newbie needs help with Nasal Pillow and compliance!

Hello everyone,

I'm a newbie to CPAP. My wife was deeply concern about my snoring and she sent me to a sleep disorder doctor, saying I don't breath every so often during the night. Before I knew it, I went through a sleep study and I was diagnosed with a severe Apnea (>55.2 AHI). Few days later, I finished my titration study done, and they diagnosed me with obstr. apnea and prescribed 8cm/H20 for CPAP therapy. All this happed in a record time, in less than two weeks from the seeing the doctor for the first time and getting the mask/cpap machine to sent home (that was last week so total three weeks from today).

Unfortunately, I didn't find this site/forum a head of time to learn about my options and I sort got stuck with a inferior machine that makes tons of noise. They gave me Opus 360 Nasal Pillow with Repironics Sleep Easy CPAP machine. To make long story short, I have been trying to use this DME provided machine that sounds like a windpipe and I feel like I'm breathing through a hurricane.

I wasn't a clasterphobic before, but now I can't sleep at all with the machine on thinking I'm going to suffocate. I felt like I was gonna choke and I can't breath if I was not focus on my breathing. I intially took a nap, thinking I should be able to comply 100%, but I woke up feeling a running out of breath within an hour. It's a miracle that I slept 5.3 hours with the same nasal pillow for a titration study at the hospital. I was thinking if I choke or suffocate, they will revive me at the hospital. Now that I am home, I'm hearing a hidius sound made by my mask and machine, and having a sort of panic attack. First two nights, I couldn't sleep at all for first five hours with the mask on. I took off my mask and slept for an hour so that I can get back to work in the morning. Now that I have a minor cold with cough, wearing mask is even more painful and makes me run out of breath whenever I cough. This is my day #4 and I can't stand the CPAP mask (breathing against the flow, the noise and the leak).

On my Opus 360 nasal pillow, the small size pillow is little too small and medium size pillow is little to big. I'm not getting a good seal and I can't get any sleep. I can't seem to breath agaist the wind flow while I'm a wake and I can't seem to fall a sleep with the CPAP on. I finally broke down and called my DME that I need another machine and mask. DME said, they only carry only one machine, that is Respironics Sleep Easy, but they carry other masks. They also say for C-flex or any other EPR system, I will need a prescription for it. So I only asked for different nasal pillow, namely Swift II or Swift LT, then told them I will talk to my doctor about it. Since my DME doesn't carry what I want (S8 Elite/Autoset II or M Pro with C-flex),I called my doctor for a prescription so that I can buy it off internet (forget the insurance, I'm too dang tired to save petty dollars at this moment). I already pulled the trigger through cpap.com and I'm now waiting for my doctor's prescription. Besides, my DME will charge my insurance nearly $150 a month for 10 months that is nearly three times the cost of the machine, which I hate. I rather pay out of my pocket to own the machine will I need since 55 AHI is pretty darn serious so that I can stop blame the equipment and but focus on 100% compliance.

Now few questions for your experts out there:
1) How's Swift LT or II for their fitments? Are they quiet?
2) How the heck did you guys survive first two weeks on your CPAP? I'm reading few success stories on the forum, and they help little bit. But CPAP feels exteremely foreign to me and unnatural to sleep in.
3) How do you deal with the stress and anger with we need CPAP for a life? I'm 38 years old, and I am not overweight nor unfit. I have 0% hope that weight reduction and exercise will get me out of CPAP.

Sorry for the long post, but I really need to vent my fume!

A newbie from Midwest, USA

I will be the first to say welcome and glad you found this site... I think it is this site that helps so many of us be and remain complaint, and is a great source of information and there is a lot of knowledgable peopl ein here!

I also use the Opus 360 nasal pillows, and sorry to hear your problems... I use the medium size and do not have any problems at all. I also tried the Swift, and before that a nasal mask. Are you sure nasal pillows is the best solution for you?
There are other types of "masks" you should be able to experiment with (nasal mask,, hybird, full face, etc).
I like the nasal mask the best myself, and with a chin strap it works for me.

I do not remember what it is called, but someone else in here will chime in and tell you what its called, but there is some type of lotion or cream you can put around the pillows to get a better seal. That should cut down on the noise you are hearing. I know what you are talking about though, I kept hearing that "hissing" last night and slept bad as a result. Sometimes I have to push that pillow back on the base and adjust the top head strap to get a better seal...

In any event, hang in there. Do not be afraid to ask questions and good luck!

I've also got a demo Zest nasal mask (Fisher & Paykel) as a back up. Although it doesn't leak as much as my Opus, having a larger mask on my nose is more difficult for me to get used to. I don't like the feeling of moist air around my nose as I exhale. I know... I am being picky, but I might be still in denial I want a smallest mask with least noise and they are nasal pillow in my book. Thanks!

Compliance for me is looking at the things treatment does right now.I look in the mirror and know the red lines in my eyes are fading, I don't sweat 6-8 pounds off at night and the sheets get washed less (saving me $$$), more awake time so im out in the world more living life, better personal hygiene( actually wash my face before bed),the cpap makes falling asleep easy cause I only listen to the tv not watch it, and I'm sure tons of other things that are not coming to me now. good luck.

I understand your frustrations.
Back up and take a deep breath. It will get better. It is hard to get used to all this given the best of situations.
I have used the Swift LT and the Opus 360 nasal pillow masks. Now everyone will have their own personal preference and comments but for me they probably are neck and neck in my favorite mask race.

When you first start this treatment every little thing seems huge. Air going up your nose seems like a tornado. Air venting noise sounds like a hurricane. Machine noise sounds like a jack hammer. It does get better.
Get your new machine, then re-evaluate the Opus and try the Swift with it. I understand wanting to use the nasal pillow mask system and there are other nasal pillow masks available. So just because one doesn't work just right doesn't mean the next won't.

You will get to where you can sleep longer and better. Unfortunately it isn't an easy adjustment for most people. It does take some work and some trial and error with various masks to find just the right combination but it will come if you just keep trying.

Even if you only get 4 hours of sleep on the machine at first, remember that is 4 hours where your body received much needed therapy. Is it ideal? Heck no, but it is better than no therapy.

What machine have you decided on?

Sir Snorealot,
Welcome....and great name, by the way. Pugsy is correct...things will get better. I suspect most of us went thru the desperation and anxiety you seem to be experiencing now. It is a brand new ballgame with CPAP. And all this adjustment must come when you are exhausted, angry, irritable, etc. No easy feat! I will venture to say the first two to three months will be the hardest...as far as adjustment, acceptance are concerned. If you can manage those beginning months...you ought to be fine....which is not to say you won't have bumps along the way. What you are doing is forming a new habit...a new daily habit....and it's hard no doubt! But it CAN be done..and it will help you immensely to commit to it heart and soul. Good luck! And stay in touch with us....especially if you ever want to quit!

I've ordered S8 Autoset II with a humidifier. Since it was suppose to be the quietest one with data capability. I'm hoping I can breath easier with it. Perhaps in the dark, every little things seem to be amplified ten fold. With my current machine making at least 31dB of noise, I am looking forward trying to sleep with less pressure on my nose to exhale. Did you guys do anything special to train yourselves with the CPAP during first month?

Sir-Snorealot,

I found the Swift LT to be the loudest of the dozen or so masks that I have tried in the past year. At the same time, it is the most comfortable and easiest to use mask that I have found. Now that I am on CPAP and am sleeping at night, I don't hear or notice the noise. I'm sleeping. I also don't notice the extremely bright blue lights on top of my machine.

I don't know why you would have stress or anger at being on CPAP. Life has dealt you a life-threatening illness, and there is a relatively easy treatment for it. My OSA was so bad that I was not longer able to function. I couldn't work, and I was rapidly becoming dangerous on the highway. I was very grateful when my sleep doctor came up with a treatment. In fact, given my current high quality of life, I am so happy to be able to use a CPAP machine. It has made all the difference to me.

-john-

Sir-Snorealot wrote:I've ordered S8 Autoset II with a humidifier. Since it was suppose to be the quietest one with data capability. I'm hoping I can breath easier with it. Perhaps in the dark, every little things seem to be amplified ten fold. With my current machine making at least 31dB of noise, I am looking forward trying to sleep with less pressure on my nose to exhale. Did you guys do anything special to train yourselves with the CPAP during first month?

Welcome to the forum. I'm in my 3rd week of cpap therapy, and am using the S8 Autoset II. I am very happy with how quiet and user friendly it is. Yes, I found there were lots of minor irritations, but after my 1st week, I was very pleased with the results, based on the data, and feeling more rested, and it made it worth it.

I learned about Ayre Nasel Gel on this forum, put a little dab on your finger and run it around, just inside the nares, before you put on the nasal pillows. It helps get a good seal, and also prevents soreness/irritation.

I keep a pencil and notebook by the bed, and make notes on what's waking me up--eg. dry mouth, mask leaking, etc., and the next morning, try and figure out strategies to deal with them, by doing a Search on the forum, or reading the Tags.

Don't give up, your health is so worth all the effort.