sleep apnea pity party

[cntrygrl]

yesterday, i went for my 'orientation' to my cpap machine. the 'respiratory therapist' talked for about an hour about sleep apnea and then gave a brief demonstration on using the equipment. i asked about the nasal pillow as i have had extensive surgeries on my face and the p.a. i saw stated i probably should not have alot of pressure on my face with a mask. the r.t. said i was to use the one he was 'recommending' (he stated he had more experience in this field than the p.a.) and see how it worked. of course, it is a mask. finally had to remove the mask to catch my breath. i called both the p.a. this morning (and again this afternoon) and the r.t. with the cpap company. neither returned my call. i don't feel i can wear this mask again until i get the correct setting on the machine which is think is too low and/or a new mask/pillow. i'm so upset and depressed that i did not get a call back to help me. i have not been given a copy of my most recent sleep study so i cannot share any numbers with you except that my setting on the machine is 9 right now and i felt like i was gasping for air throughout the night. i can only offer that my O2 during my sleep study was at 88% and i stopped breathing 55 times/hr. guessing i just wanted to vent somewhere with folks that might understand. i'm thinking of taking the machine back tomorrow and demanding a refund to take my business elsewhere. anyone else ever have this problem? what about
customer service? i'm concerned if i'm not getting a return call my first day that i won't be getting one down the road. thx for listening.

[spacetoast]

I know that the DME here (Apria) will let you exchange masks within 30 days. You could try another mask. Do you know what kind of mask you are using now? What brand and model? If it is just a nasal mask, are you having issues with stuffy sinuses? I am currently using a nasal mask and if I don't have at least one nostril totally open, I feel like I can't breathe either.

If you fill out the portion in your profile with the equipment you have the folks here can make better suggestions to try to get you on track too. Your machine might have functions that make it easier to breathe against the pressure for you if you are having a hard time.

I guess it's my evening to be a cheerleader because I just made a post in another topic telling the original poster that he had found a gold mine of information by finding this forum. I say that because it made my transition into xpap therapy really easy. SO many tips and tricks to be found. Really, if you have a couple of hours, click on that yellow light bulb above and just start reading all the articles from the top to the bottom and by the time you've finished reading, you'll probably know more about xpap therapy than the doofus r.t. you dealt with.

[alnhwrd]

Dear Cntrygrl,

It sounds you have been/are being treated badly, and I am very sorry to hear that this is happening to you. It sounds to me like a nasal pillows type mask that does not rest or apply pressure to the face would work best for you. Perhaps something like the Swift LT which many on the forum use and are quite comfortable with would work for you. If you have the option to take your business elsewhere, it may be advantageous for you to do so. The other option is to work your way up the food chain with the current RT until you find someone who cares about the fact that the people in charge of serving its company's customers is not doing their job. Make sure that they are aware you are struggling and unable to use the equipment. With 55 events an hour you are in the "severe" OSA catagory and absolutely need to be on CPAP. If you are gasping for air you may need an adjustment to your pressure, or to try some Exhalation relief (A-Flex, C-Flex EPR or Easybreathe depending on your machine type) to help you breath out easier, or you may just need to relax and let your body breath with the machine. The most important thing is that you stay with it and find a mask, machine and setting that you can learn to become comfortable with and that delivers effective therapy. Your health depends on it.

Feel free to post anytime, or to join the chat which is usually more active in the evenings. I hope things get better for you soon!

[cntrygrl]

has anyone ever heard of the nasal pillow not being appropriate for people with sleep apnea that will require a higher pressure of air? that's what the r.t. told me. i think he's full of hot air....no pun intended. i think he was just pushing the mask he wanted me to have and not the one i think would've been a better fit. i am using the ultra mirage II nasal mask.

[Julie]

Please please fill in your profile, or at least tell us what pressures you're using. Some people at first confuse their scripted pressure(s) with the ramp feature (that allows you to reach the scripted pressure slowly if you're not used to air blowing at you) but after a very short time most of us don't use it because it seems harder to breathe at the beginning of the ramp up rather than just going straight to the other one. Also some patients do not have scripted pressures set at all, but are given the machine with default settings (4-20) and sent out that way, which again would put off anyone as being expected to start out your night at 4, rather than at least 6 or 7 is very hard.

[mars]

has anyone ever heard of the nasal pillow not being appropriate for people with sleep apnea that will require a higher pressure of air? that's what the r.t. told me. i think he's full of hot air....no pun intended. i think he was just pushing the mask he wanted me to have and not the one i think would've been a better fit. i am using the ultra mirage II nasal mask.

Hi cntrygrl

The only thing that I can think of in relation to the above is that possibly the higher the pressure the more likely a person is to have leaking from the mouth. This can sometimes be dealt with by taping and/or a chinstrap, neither of which worked for me when I used a nasal mask.

Good luck in getting it sorted out, the above posts should help you there.

cheers

Mars

[drubin007]

a pressure of 9 would not be an issue for nasal pillows at all....

I have used nasal pillows from Optilife, swift and Opus... Of the 3 I like the Opus the most. Once every few weeks I will use the Swift for a night or 2 just for something different though.

I am on an auto machine, I forget my settings now, but something like 7 to 17? Nasal pillows work fine. If I was on straight cpap with a pressure of 17 I suspect the pressure would blow the headgear off my head. I was originally prescribed at 9 as well though, and originally given a nasal mask which hurt me too bad. the pillows work better (for me at least), combined with a chin strap.

[Pugsy]

I use the Swift LT nasal pillows. I have them actually fairly loose. I have APAP machine and it is set at 9 cm minimum with max at 20. Most of the time I don't need the higher pressures but every now and then it seems to want to go to 15 - 17. I will get a little bit more leak at the higher pressures but not large leaks. I suspect if I had the straps just a wee bit tighter that I would have minimal leaks.

Sometimes these techs just try to blow smoke I think.... The sleep study tech told me that it would take 3 months for my nose to toughen up to nasal pillows. Huh??? I have had only minimal tenderness (at the beginning) and that was related to having straps a bit too tight.

I think sometimes these techs get in a habit of recommending one thing because they are sort of comfortable with it and lack the desire to broaden their horizons and learn new things.

Make them give you the mask that you want. It is your body and your therapy. While you are at it, make sure you have a fully data capable machine. Just because it has a card in it doesn't mean it gives you full data. Make sure you know what you have.

[raggedykat]

Believe me, the only help you are going to get dealing with your sleep apnea is here in this forum. I have called my doctor twice and my DME numerous times about problems I was having since I started with therapy (about six weeks ago). They always give the same answer - "I have never heard of that, it can't possibly be related to using a cpap machine". So don't even bother. The people here are more knowledgeable and so much more compassionate.