Old timer but discouraged
I've been using a cpap machine since 2009 and always thought I was doing well. Granted my original diagnosis was severe sleep apnea, so any improvement at all was definitely noticeable.
Recently I started using a chin strap but found it slipped around quite a bit, so ordered a different brand of chin strap. It does not seem to matter what I do nor how I do it to alleviate 'leaks' - it still happens. Is there a point where one arrives at and you think ......."this is as good as it is going to get"? I don't know if my leak rate is good, bad or otherwise. The leak numbers can range anywhere from 14 to 34. I'm just really discouraged to see these kind of numbers after all this time.
RE: Old timer but discouraged
(04-13-2015, 07:59 AM)GrammaBear Wrote: I've been using a cpap machine since 2009 and always thought I was doing well. Granted my original diagnosis was severe sleep apnea, so any improvement at all was definitely noticeable.
Recently I started using a chin strap but found it slipped around quite a bit, so ordered a different brand of chin strap. It does not seem to matter what I do nor how I do it to alleviate 'leaks' - it still happens. Is there a point where one arrives at and you think ......."this is as good as it is going to get"? I don't know if my leak rate is good, bad or otherwise. The leak numbers can range anywhere from 14 to 34. I'm just really discouraged to see these kind of numbers after all this time.
I have yet to begin treatment so I have no advice but I do have a question. Do you have an "auto" machine? From what I read here getting top notch care is difficult in the DME snake pit.
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
04-13-2015, 08:36 AM
(This post was last modified: 04-13-2015, 08:37 AM by TiredToo.)
RE: Old timer but discouraged
I've only been at this for a few months but I have tried a nasal mask, P10 pillows and a FFM. I really love the pillows but I get bad mouth leaks with the pillows and nasal mask (even with chin straps) and as a result, my AHI numbers were often not as good as I think they could be. As much as I loved the pillows, I only use the FFM now since I have virtually no air leaks except on a very rare occasion. My numbers still aren't as low as I'd like them (I want a 0 darnit!) but they are usually below or around 5 lately.
I have read here that we can train ourselves not to breathe or leak out of our mouths. I do intend to try the pillows every now and then in the future but the bottom line is that like everyone else here, I need to get some quality sleep! So I just use the FFM even though I'd prefer the pillows. Getting the right size FFM was another story altogether. 
RE: Old timer but discouraged
GrammaBear, have you tried a full face mask? I know the P10 is the darling of the forum but it doesn't work for everybody - including me. If you are having constant problems with mouth breathing or leaking then the full face may be worth a try.
RE: Old timer but discouraged
(04-13-2015, 08:36 AM)DeepBreathing Wrote: GrammaBear, have you tried a full face mask? I know the P10 is the darling of the forum but it doesn't work for everybody - including me. If you are having constant problems with mouth breathing or leaking then the full face may be worth a try.
Nope, never tried a FFM and not sure how to go about getting one and having it fitted properly. My local DME is not the most helpful and I can't afford to buy one FFM after another just to get a good fit. In addition I have a narrow bridge on my nose - so don't know how that would figure into it either. I just wish it were easier to get an appt with the sleep doctor. I have a great doctor, but he is in such high demand that one has to make an appt months in advance unless it is an emergency. Don't think a mask leak is really an emergency for me at this point.
04-13-2015, 09:10 AM
(This post was last modified: 04-13-2015, 09:12 AM by Mich.)
RE: Old timer but discouraged
(04-13-2015, 08:52 AM)GrammaBear Wrote: (04-13-2015, 08:36 AM)DeepBreathing Wrote: GrammaBear, have you tried a full face mask? I know the P10 is the darling of the forum but it doesn't work for everybody - including me. If you are having constant problems with mouth breathing or leaking then the full face may be worth a try.
Nope, never tried a FFM and not sure how to go about getting one and having it fitted properly. My local DME is not the most helpful and I can't afford to buy one FFM after another just to get a good fit. In addition I have a narrow bridge on my nose - so don't know how that would figure into it either. I just wish it were easier to get an appt with the sleep doctor. I have a great doctor, but he is in such high demand that one has to make an appt months in advance unless it is an emergency. Don't think a mask leak is really an emergency for me at this point.
Grammabear, I have a Resmed F10 as a standby for allergy season should it be hard for me to breath through my nose. I used it a couple of times and I can tell you that it is more uncomfortable than the Wisp or Eson and that my tossing around from side to side caused leaks, that is why it is on standby. It would be quite an adjustment for you since you have been using the P10 with success. I was not that lucky. I am sitting on the fence on trying the Aloha but it is starting to get expensive buying all these masks. The FFMs are also quite expensive when purchased without insurance. The Eson is narrower on the bridge due to its nasal design, you can wear it incredibly loose and it does not leak, but it has the plastic that goes from nose piece to forehead support (making it unsuitable for wearing glasses).
Good luck to you!
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I have yet to begin treatment so I have no advice but I do have a question. Do you have an "auto" machine? From what I read here getting top notch care is difficult in the DME snake pit.
[/quote]
Her profile reads she is using the Resmed S9 Autoset.
RE: Old timer but discouraged
Quote:I have yet to begin treatment so I have no advice but I do have a question. Do you have an "auto" machine? From what I read here getting top notch care is difficult in the DME snake pit.
Her profile reads she is using the Resmed S9 Autoset. [/quote]
OOPS!
(I wonder is it in auto mode?)
Will go have another cuppa 
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
RE: Old timer but discouraged
GB: it's cheaper to try multiple chin straps than trying multiple FFMs.
If you do want to explore the FFM route, the. I highly recommend Resmed F10. I had leaks under control with that. Although now, I use a nasal pillow mask P10.
IMHO, the nasal pillows make the cpap experience much more pleasant.
PRS1 Auto & Dreamstation Auto w/ P10 and straight pressure of 8cm
RE: Old timer but discouraged
Agreed on trying a couple of chinstraps before trying more masks.
I used a simple ace bandage in the beginning and it was actually okay.
I had a snore strap that I tried before even getting the sleep study and it was really bad, pulled my chin back.
Went with a Ruby. It works good for keeping the chin up and not pulling it back. I would have tried a Pap Cap next if needed.
I'm not even opening my mouth now. But sometimes air still leaks by, and pushes it's way out. The main fix for me is to keep my tongue not only up, but also rolled back some. Sometimes I wake up and wonder where is that noise coming from, then I realize it's coming from me, from the back of my throat. My tongue will be up, but a little too far forward. Moving it back just a little blocks the air and stops the noise from the leak. When I'm on my back, my tongue seems to stay back better on it's own weight.
RE: Old timer but discouraged
(04-13-2015, 10:06 AM)worn_out_in_lebanon Wrote: Agreed on trying a couple of chinstraps before trying more masks.
I used a simple ace bandage in the beginning and it was actually okay.
I had a snore strap that I tried before even getting the sleep study and it was really bad, pulled my chin back.
Went with a Ruby. It works good for keeping the chin up and not pulling it back. I would have tried a Pap Cap next if needed.
I'm not even opening my mouth now. But sometimes air still leaks by, and pushes it's way out. The main fix for me is to keep my tongue not only up, but also rolled back some. Sometimes I wake up and wonder where is that noise coming from, then I realize it's coming from me, from the back of my throat. My tongue will be up, but a little too far forward. Moving it back just a little blocks the air and stops the noise from the leak. When I'm on my back, my tongue seems to stay back better on it's own weight.
Maybe I'm expecting too much, but I truly don't understand how my AHI can be fairly good at 0.5 to 2.0 but the leaks can be not so good at 14, 24, and several times I've had a 51. I am supposed to be getting new supplies via the DME (Medicare's every 3 month thing) soon, so could it be that the nasal pillows are just worn out?
My husband says he does not hear me snoring anymore, so that is a good thing. I don't wake up with a dry mouth so maybe I'm not "mouth leaking" a lot either....don't really know.
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