If Anyone Needs Convincing Evidence!

[49er]

Totally agree RobySue. As one who has tried repeatedly to wear a mask for two years to no avail, I know very well what the consequences are of not being able to adjust. But that doesn't make up for the fact that I can't find a freaking full face mask that works due to massive leaks and having to severely tighten the straps that cause the mask to dig into my face.
Can't wear nasal masks that would be lot more comfortable due to nasal obstruction issues and is the reason I plan to have turbinate reduction surgery and a septoplasty next month.

Interestingly, Krakow, in his series on nasal breathing, advised people to put the mask aside momentarily when they start getting frustrated from using it. He didn't think it was productive to keep essentially beating your head against the wall.

49er

PS - Yes, I tried the Anew and the reviews are totally accurate on that about it leaking massively.

Great stories! This helps remind me to emphasize the importance of not giving up to our pts.

While I totally agree that it's important to not give up, I do want to add this caution: When you are a newbie facing multiple adjustment problems and your sleep has worsened signficantly since starting CPAP, sometimes the last thing you want to hear is: Don't give up, just try harder. It can be very depressing to keep using a machine that is supposed to make you feel better for weeks or months and actually feel worse than before you started therapy.

All I'm saying is that pep talks without giving the patient some useful suggestions based on the experiences of real PAPers is not going to be enough to help a newbie in trouble over the significant hump of hopefully short-term CPAP-induced sleep fragmentation or insomnia. Even better would be a system to put PAPers in trouble with successful PAPers.

I actually have a friend that stopped using it after trying several mask etc.. He acts like he just cant do it....I'm going to show him these and maybe "scare" him into trying again.
Thanks for posting!

Have you actually asked him why he finds it so difficult? While it's easy to blame folks who say "I just can't do this" after trying several masks, it's really much more important to listen to exactly what the patient's complaints are and then address those complaints in a way that makes it clear you've heard what the patient is saying. Some times the "answer" is NOT found by continuing to try more masks, but rather figuring out why a reasonably comfortable mask is not working well (yet).

[kteague]

...Sadly, I still have unexplained exhaustion. I still have to take both Provigil and Ritalin to be awake, alert, and active. Sometimes those meds don't do it either. Sometimes, I sleep with my machine, take my meds, and I still cannot wake up. The docs don't seem to have an answer for me:(

I'm guessing you have a laundry list of medical things your doctors have tested you for in an effort to pinpoint a cause for your continued symptoms. Since you seem to have a handle on the sleep apnea, just wondering if you have any issues with limb movements or jumpy legs at night. If the answer to that is absolutely no chance, my next question is if you've been tested for narcolepsy.

[DoriC]

These last few posts reminded me that I forgot to mention a few of the important facts I was able to pull out of my friend before he clammed up. He stopped d/l his data, didn't remember if he made any adjustments to his pressures, didn't consult with any dr and never tried any other masks. And of course he had no knowledge of this forum which I was able to mention. I wish I knew why we didn't give up when everything in me wanted to. Mike would have been so relieved to be done with it all. He told me many times he had lived long enough so why bother with this stuff. Even our Dr told me to just turn off the machine any time Mike wakes me up, he said "sleeping a few hours with cpap is better than nothing". His advice did not come from the Dr side of him, but from a dear friend. It's hard to be told to try harder when you don't know what else to try! There is so much frustration in not being able to fix what I can't feel. Data doesn't always tell the whole story as you all know. Right now things are peaceful for awhile, with suggestions from the "experts", I've lowered his pressures which seems to be controlling his centrals and apneas. Another tip I got from dear Chunkyfrog was to put a thin layer of Lansinoh around the cushion,which makes it a bit tacky and no more leaks which had a lot to do with our problems! I'm glad this has turned into a very insightful topic with lots to think about.

[MagsterMile]

Very interesting topic Dori and the responses! I was at a lecture recently on 'Dry Mouth'. It was by a dentist who was talking about the effects of dry mouth and how it can cause terrible cavities that are for the most part, non repairable. He talked about 'Biotene' and a candy called Xylitol (Sp?) that helps with the condition. I mentioned getting 'Walgreens Dry Mouth' rinse and saving a couple dollars as opposed to Biotene. Well, as the lecture was winding down a lady in front of me asked why I had dry mouth and my usage of the rinse for it. I responded that its probably because I'm a mouth breather and use an apnea machine. She was actually at the lecture due to her husband's dry mouth. In place of attending the lecture, he had gone to a men's poker game so she could take notes for him. She said he too had apnea but stopped using his machine. She said he finally moved into another bedroom since his snoring was getting worse and louder. She said he will not go back to using his machine because (her words) he doesn't like all the 'gunk in the mask'. I believe she said that he uses a 'FFM'. I advised her to keep encouraging him to get back on the machine since he's snoring louder and louder and it could be getting very dangerous for him. She just shook her head and said he wouldn't go back on it, ever.

[Loreena]

I went to a funeral of a dear childhood friend about a month ago. He was in his late 40s and had 4 kids. The autopsy showed he had an enlarged heart. I just found out he had had an appointment scheduled to meet with a dentist to get an oral appliance (he died before he had the appointment). Now I'm wondering if the culprit was sleep apnea. Very, very sad. I'm still upset. I don't know if he ever had a sleep test and had not talked to him in decades--he married someone other than me

[Sleepy in Wenatchee]

Dori, that just confirms the decision I made to stick with it. I've been on CPAP for almost a year now and still am fatigued frequently. But I know my AHI is under control and that is what will save me. My sleep Doc prescribed Modifinal (Provigil) to help me be more alert. I still am tired during the day but not as much and my mental focus is much sharper since starting it a week ago today. So, I'm hanging in!

[zoocrewphoto]

Have you actually asked him why he finds it so difficult? While it's easy to blame folks who say "I just can't do this" after trying several masks, it's really much more important to listen to exactly what the patient's complaints are and then address those complaints in a way that makes it clear you've heard what the patient is saying. Some times the "answer" is NOT found by continuing to try more masks, but rather figuring out why a reasonably comfortable mask is not working well (yet).

Very true. I knew my mask was a good choice because the sleep tech used the same style mask during my sleep study, and I slept over 5 hours straight without any memory of any leaks. Yet it took me 6 weeks to mostly master it at home. I spent weeks cursing at it in the middle of the night. If i had not had that great night in the sleep study, I would have given up on that mask and moved on, dismissing a great mask choice. I have since tried 2 other masks looking for other great masks, but I still use that first mask as my primary mask. And I rarely have any leaks, except when I drool into the seal.

Sometimes, the right equipment is there, but the technique is not an easy thing to master, especially at night when we are exhausted. But it is also not great to tell somebody they are doing it wrong. So, it takes some careful listening and helping to coach the new person into success.