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Permalink Reply by Terry Vella on February 5, 2012 at 6:40pm

Julie, Welcome and well done so far, it really is a marathon not a sprint. Nearly all of us have the same issues ait the start of treatment but it does get better, it just takes time. For me it took about 6 months to get fully used to it but now I feel great most days. I use the same machine but a full face mask. That would help your sore up the nostril or a nasal mask rather than the pillow. At the start I went through 5 different masks before I found the right one. The mask is the most difficult to master but is also the most important. On your machine check out some of the options that you can change if necessary like Ramp up and the ERP which assists with your exhaling. I think the most important thing with CPAP is attitude and if you have a positive attitude towards it like you do you will succeed. Good luck and ask any qestions if you need.

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Permalink Reply by Julie Amato on February 5, 2012 at 9:35pm

Thanks for your advice Terry. I am going call about the ERP. I do wake feeling like I cannot keep up with the pressure and I have difficulty exhaling. Unfortunately, the nasal mask did not fit me that well. I needed a smaller size and it did not come in a smaller size. I am hoping that they will ship me the mask that I was fitted for. I believe that they said that my insurance would pay for it, if needed. My sinuses are REALLY sore, my head, sinuses and ears are really inflamed right now. I am prone to sinus infections, I sure hope that the CPAP does not cause an increase in those infections. I will keep a positive attitude, thanks for your encouragement!

Terry Vella said:

Julie, Welcome and well done so far, it really is a marathon not a sprint. Nearly all of us have the same issues ait the start of treatment but it does get better, it just takes time. For me it took about 6 months to get fully used to it but now I feel great most days. I use the same machine but a full face mask. That would help your sore up the nostril or a nasal mask rather than the pillow. At the start I went through 5 different masks before I found the right one. The mask is the most difficult to master but is also the most important. On your machine check out some of the options that you can change if necessary like Ramp up and the ERP which assists with your exhaling. I think the most important thing with CPAP is attitude and if you have a positive attitude towards it like you do you will succeed. Good luck and ask any qestions if you need.

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Permalink Reply by Terry Vella on February 5, 2012 at 10:07pm

Julie, on mine you can change the ERP yourself, it has settings 1 to 3 and 3 is the best for me. I'm in Australia and our settings are slightly different to yours but the machines are the same. I really like the Resmed because it is quite, dark and has a good water storage for the humidifier. Another tip is to have your hose coming from above your head either on a stand or bed head. If you have it along your side you can get tangled in it and by having it about your head the gravity keeps it on better. If the sinus problems continue speak to them about a nasal mask or full face mask they do take a bit of getting used to, but you won't get the sore nostrils. The FFM is also ideal if you are a mouth breather or if you have a cold and blocked sinuses.

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Permalink Reply by Mary Z on February 6, 2012 at 10:39am

Hang in there it will get better.  Unfortunately it may not make you completely well, but you should feel some improvement once you are able to make it through the nights with your machine.  You can lightly tape the mask to your face to wake you when you take it off.  There is also Ayr gel available that you can use in your nose.

Just keep at it.  Good luck, keep us posted.

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Permalink Reply by Kristi Halsey on February 6, 2012 at 5:36pm

Hi Julie!  The only thing I would add is something I read that others have used with nasal pillows.  That is, instead of KY Jelly, try Lansinoh (a product that nursing mothers use).  I use a ResMed Mirage FX nasal mask, which works well for me.  Keep up the good work!

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Permalink Reply by Julie Amato on February 6, 2012 at 6:07pm

Thanks All, I did go to the doc and I have a sinus infection and a bulging ear drum. I have had these kind of infections before, so I am not blaming the CPAP. I have the RT coming to my school tomorrow with a selection of face masks as well as he Mirage nasal mask. I called them and they said that those might be easier to use while I am sick. I still slept fairly well last night, though I woke up with water in the tubing.....darn! Kristi, where do I find the Lansinoh?

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Permalink Reply by Terry Vella on February 6, 2012 at 6:11pm

Julie, with the water in the tubing, a few things to check, make sure your don't overfill the water storage, I did it once and got wet, make sure the CPAP unit is below your bed but not on the floor, have your hose coming from above your head and make sure your humidity temperature setting is right for you climate.

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Permalink Reply by Mary Z on February 7, 2012 at 1:28pm

Lanisoh (I know I spelled that wrong) is with the baby products in the drugstore.  Ask the clerk if you can't find it.  It's for nursing mothers and is great stuff.  You can google it and find links to buy it online or at drugstores
 
Julie Amato said:

Thanks All, I did go to the doc and I have a sinus infection and a bulging ear drum. I have had these kind of infections before, so I am not blaming the CPAP. I have the RT coming to my school tomorrow with a selection of face masks as well as he Mirage nasal mask. I called them and they said that those might be easier to use while I am sick. I still slept fairly well last night, though I woke up with water in the tubing.....darn! Kristi, where do I find the Lansinoh?

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Permalink Reply by ZolliStar on February 7, 2012 at 8:48pm

Julie, I just posted information about the SleepWeaver mask, which really works for me. Maybe it will work for you.

Julie Amato said:

Thanks All, I did go to the doc and I have a sinus infection and a bulging ear drum. I have had these kind of infections before, so I am not blaming the CPAP. I have the RT coming to my school tomorrow with a selection of face masks as well as he Mirage nasal mask. I called them and they said that those might be easier to use while I am sick. I still slept fairly well last night, though I woke up with water in the tubing.....darn! Kristi, where do I find the Lansinoh?

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Permalink Reply by Julie Amato on February 9, 2012 at 7:32pm

All is well! Thank you all for your advise. I switched to the Mirage FX Nasal Mask and to the heated/thermal tubing. ( The tubing was recommended because I keep my house at 63 degrees, that was most likely causing the formation of condensation.) Life is good! My Goodness what a difference a mask makes. So many of my friends raved about the pillows. I guess we are all different.  I feel like the Nasal Mask is less obtrusive than the pillows. The Nasal mask is so soft and actually allows for much more movement while sleeping. I also like it because my face is still free. I love that i can unhook the hose only if I need to get up. I have had two full nights of full compliance,  in that I did not wake up once without the mask on my face!!! (That is huge, in that I was taking it off unknowingly during the night.) 

FYI, I called my medical supply company on Monday and they set up an appointment at my school, after hours, to come out and check out my machine and fit me to another mask. That was key. I am busy and really do not have the time to travel for an appointment nor did I want an early evening appointment. The company was wonderful. Once again the respitory therapist was a wealth of information.

I was placed on steroids once again today, for my sinus infection, and asked the phamacist about the best way to medicate myself with affecting my sleep cycles. OMG.....it's actually a thing.....medication and sleep cycles. He was also very knowledgeable and made reccomendations.  

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Permalink Reply by Andy on February 9, 2012 at 9:09pm

Hi Julie,

Good to hear that you had a good night last night, especially since you also have the sinus infection. Imagine how great it will be when the infection is gone!

I had a similar experience when I started on CPAP (I have an S8, which I've been using for about a year) and the nasal mask worked best for me.

I was somehow taking it off in my sleep, but that stopped after a week or so.

After a few months, I tried the Swift FX, and have stayed with it since.

I used to get sinus infections a lot, but since CPAP, they have pretty much stopped.

It sounds like you're well on your way, but if you ever have doubts, I can tell you that I feel way better now that I'm on CPAP.

I used to be so tired, and my memory was awful, but I'm so best better now!

Keep at it, and if you ever get discouraged, come back for some pep talks!

;)

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