OK after 3 years, Back to CPAP

[FUQE3]

Back in 2012, I was diagnosed after a sleep study with mild sleep apnea with an AHI of 10.

Compared to many on this forum it doesn't seem like a very big number but after several years waking up feeling ill and not understanding why; days I have come to describe as "lost days" , I was prescribed CPAP therapy which I tried for a couple of weeks and felt NO better. Actually my Swift FX mask was so poorly fitted that it caused sores and extreme tenderness around my nostrils causing me to abandon the therapy that wasn't working anyway.

Some weeks later out of desperation and being a stomach/side sleeper, I bought a Sleepweaver mask which did nothing but leak and cause fit issues that left me once more using CPAP and receiving no benefit.

I have spent the last 3 years with the CPAP machine and mask packed away in my closet while suffering random and frequent "lost days" interspersed with some great days but wondering what to do to about the "lost days" which comprise the other half of my life.

So after several lost days in a row, and reading this forum, out came the CPAP machine again. Is there anything I can do to make this work for me? What are your recommendations?
My pressure is 6 and I am back to the Swift FX. What are your recommendations for getting a full night's sleep?

[Pugsy]

Let's address the mask issues first because if the mask causes pain your sleep quality will be in the toilet right from the start.
Nasal pillow masks should never cause skin abrasions or sores or anything but very minor tenderness initially and if they do then it is either wrong size nasal pillow or poorly fitted or both.
You might read this
https://maskarrayed.wordpress.com/swift ... ing-guide/
and watch the fitting video for the Swift FX available here and/or search uTube videos for it....lots out there
https://www.cpap.com/productpage/resmed ... dgear.html

The most common error made by nasal pillow mask users is they simply get the straps too tight and with the Swift FX it's often the top strap. If you look in the mirror with the mask on and the first thing that crosses your mind is "I look like Miss Piggy" that top strap is way too tight. These masks do not have to be tight to seal and stay in place.

Go to WalMart or similar store and get a product called Lansinoh ointment/cream. Comes in a little tube and is a bit pricey for the size of the tube but you only use a tiny dab on/in the nostrils so it will last a long time. In WalMart it is found in the baby aisle where the nipples and bottles are found. It's a product used by nursing mom's to help with nipple discomfort. It's safe for you and your mask.
Use a little dab on the outer nostril and inside just a little bit before you mask up at night.
If any minor tenderness happens the next day you can use more of it during the day...just don't use a big gob of it at bedtime because with your body heat the ointment will turn to slippery mess and you might end up with the nasal pillow in your ear (I did that once).

Are you having any trouble inhaling and exhaling with current pressure?

[FUQE3]

First off, thank you SO much for taking the time and effort to write back to me and address my issues.

Let's address the mask issues first because if the mask causes pain your sleep quality will be in the toilet right from the start.
Nasal pillow masks should never cause skin abrasions or sores or anything but very minor tenderness initially and if they do then it is either wrong size nasal pillow or poorly fitted or both.
You might read this
https://maskarrayed.wordpress.com/swift ... ing-guide/
and watch the fitting video for the Swift FX available here and/or search uTube videos for it....lots out there
https://www.cpap.com/productpage/resmed ... dgear.html

Thanks for these links, I have watched them and they were extremely helpful.

The most common error made by nasal pillow mask users is they simply get the straps too tight and with the Swift FX it's often the top strap. If you look in the mirror with the mask on and the first thing that crosses your mind is "I look like Miss Piggy" that top strap is way too tight. These masks do not have to be tight to seal and stay in place.

Last couple of nights I actually figured this out, that the nasal pillows do NOT have to be jammed up your nose but can literally find your nostrils and seal from the pressure alone with a fairly loose and comfortable fit. This in and of itself has been a huge breakthrough for me. Unfortunately I woke up a couple of times to discover air leaking out of my mouth although my leak rate did not exceed 24 and averaged 9. I also woke up way too early and despite having no nose sores and an AHI of 1.9, I had a very bad "lost day"

Go to WalMart or similar store and get a product called Lansinoh ointment/cream. Comes in a little tube and is a bit pricey for the size of the tube but you only use a tiny dab on/in the nostrils so it will last a long time. In WalMart it is found in the baby aisle where the nipples and bottles are found. It's a product used by nursing mom's to help with nipple discomfort. It's safe for you and your mask.
Use a little dab on the outer nostril and inside just a little bit before you mask up at night.
If any minor tenderness happens the next day you can use more of it during the day...just don't use a big gob of it at bedtime because with your body heat the ointment will turn to slippery mess and you might end up with the nasal pillow in your ear (I did that once).

Are you having any trouble inhaling and exhaling with current pressure?

I have a tube of Lanisoh and have been using it but I am also hoping that the breakthrough with mask fit, will mitigate the need for this topical medication. I'll use it prophylactically anyway. Great product!

I am not having ANY trouble inhaling or exhaling. I find it super easy and somewhat soothing. But I do wonder if my pressure could be too low particularly in light of my sleep study comments:

Adequate treatment of mild OSA with nasal CPAP at 6 cm of H2O. It should be noted that due to the absence of sleep in the supine position and REM sleep at this pressure, the optimal pressure setting may have been underestimated.

[Pugsy]

Fragmented sleep, for any reason, simply trashes our sleep quality and greatly hinders us from feeling whatever good numbers our AHI might be.
If those mouth breathing leaks didn't wake you up I would tell you not to worry about them right now since they aren't massive and are likely short lived.
Up to you if you want to try the chin strap or taping thing right now or a little later after you have giving yourself a bit more time. It does take some time for the brain to become less "alert" and let you sleep a little more soundly and not be woke up with the least little thing.

Do you take any meds for any other reason? Sometimes meds have side effects that even the best cpap therapy can't remove.
Do you have any other health issue that might affect sleep quality? Example...I have some pretty nasty arthritis issues and pain really messes with my sleep. I had a bad night last night...or worse night I guess. Lots of wake ups from shoulder pain despite my usual meds.
My AHI is great but I feel like crap this morning Sometimes there's just more to this "feeling better" thing than just good numbers and even decent hours of sleep. I slept poorly with a lot more awakenings than I normally have and I also woke up and decided to get up sooner than I really wanted to but I knew I just couldn't get back to sleep.

While some people do get the "miracle" quickly with cpap therapy...most of us do not.
Sometimes we simply have other issues going along that the machine can't fix no matter how much we want it to. Gotta start somewhere though...so fix the known problems as best we can and if that doesn't give us the results we want we continue looking and fixing as best we can.

[yaconsult]

Welcome back! It's unfortunate that you didn't get the help you needed when you got your equipment. The DME is supposed to show you how to use it and make sure it fits properly.

I ran a poll recently to find out what the most popular nasal pillow masks are among the posters here and the AirFit P10 got 67% of the votes while the Swift FX got 13%. You can see the comments here: viewtopic.php?f=1&t=106883 Finding the right mask for YOU is the hardest part of the whole process but masks have improved greatly over the years. Our sponsor, cpap.com, provides free return insurance for the AirFit P10 so it's easy to try it without risk.

I tried the Swift FX and I liked the adjustability but the part under the nose was a bit too flexible and as I moved around it would flex and I'd get leaks. The P10 doesn't seem as adjustable but it turns out that it doesn't need to be. It just works! And the shell that holds the removable pillows is rigid so that it stays sealed. It is a pretty elegant design.

For the mouth leaks I was using the ruby red chinstrap, which is popular here. But I realized that I was still blowing air out through my lips which you can do even with your teeth clamped together. So I have been experimenting with taping my lips together with 3M Micropore tape across the lips and this seems to be working very well. There are many threads on this forum about taping.

Please continue to post about any issues you have - there's a tremendous amount of valuable experience here.

[Sir NoddinOff]

Three years? That's a long lapse, however we're all glad you are determined to get it right this time. You've already gotten some good advice so stick with it and better luck this time. Regarding nasal pillows during the early days, I too jammed them up in my nose for a few uncomfortable nights... but that's the way we learn, especially if you come on CPAPtalk and ask questions like you have.

[FUQE3]

Fragmented sleep, for any reason, simply trashes our sleep quality and greatly hinders us from feeling whatever good numbers our AHI might be.
If those mouth breathing leaks didn't wake you up I would tell you not to worry about them right now since they aren't massive and are likely short lived.
Up to you if you want to try the chin strap or taping thing right now or a little later after you have giving yourself a bit more time. It does take some time for the brain to become less "alert" and let you sleep a little more soundly and not be woke up with the least little thing.

I am considering taping as I read that chinstraps can stretch or irritate. I am not sure I really want to wrap my head like that.

Do you take any meds for any other reason? Sometimes meds have side effects that even the best cpap therapy can't remove.
Do you have any other health issue that might affect sleep quality?

I take small doses of ambien to help fall asleep and have been doing so for over a year now. Otherwise I take the occasional NSAID for aches and pains. Sorry you had a rough night last night
Health issues? Well, my BPH gets me up to pee every night but usually only once. I have something called BFS (benign fasciculation syndrome) that manifests itself as twitching mostly in my lower legs. But otherwise I work out three to four times a week and generally consider myself to be fairly healthy but for feeling like a zombie half the time.

While some people do get the "miracle" quickly with cpap therapy...most of us do not.
Sometimes we simply have other issues going along that the machine can't fix no matter how much we want it to. Gotta start somewhere though...so fix the known problems as best we can and if that doesn't give us the results we want we continue looking and fixing as best we can.

I guess my return to CPAP was really a capitulation after just feeling rather desperate. I am a realist and know this is going to be a work in progress but part of me does hope there's a miracle at the end of it.

[FUQE3]

So I have been experimenting with taping my lips together with 3M Micropore tape across the lips and this seems to be working very well. There are many threads on this forum about taping.

Please continue to post about any issues you have - there's a tremendous amount of valuable experience here.

How has the taping been working out for you?

[FUQE3]

Three years? That's a long lapse, however we're all glad you are determined to get it right this time. You've already gotten some good advice so stick with it and better luck this time. Regarding nasal pillows during the early days, I too jammed them up in my nose for a few uncomfortable nights... but that's the way we learn, especially if you come on CPAPtalk and ask questions like you have.

It was a long lapse (I am stubborn!) but I don't want to feel like crap anymore, it's so debilitating as you all know.

Another question I'd like to throw out there. When is it ok to adjust CPAP pressure, what would I be looking in my data that might indicate my pressure is too low?

[Tatooed Lady]

I haven't had the pillow in the ear (yet), but a year and a half in, I find that I still occasionally wake a bit to adjust the mask fit, then right back to sleep. My boyfriend noted that I had some loud leaks one night, but I didn't wake up, so I don't sweat it. If my AHI is above 2, I generally like a steaming pile of poo. I also started off with untreated AHI at just over 10.
The ruby chinstrap can help get you started...I have one that I use if I'm having trouble a few days running. Also, don't stress out too badly if you wake to leaks...if you wake, fix the problem, then go back to sleep. Eventually, you will train your body to behave (mouth closed, etc) even while you sleep. It's not an immediate fix, be patient and consistent.

[Janknitz]

Hopefully, you are using a brand new Swift FX. If it's 3 years old, the silicone has deteriorated, and that will contribute to your problems.

[yaconsult]

So I have been experimenting with taping my lips together with 3M Micropore tape across the lips and this seems to be working very well. There are many threads on this forum about taping.

Please continue to post about any issues you have - there's a tremendous amount of valuable experience here.

How has the taping been working out for you?

The taping has been working very, very well. It started when I noticed once when I was waking up that I was breathing out by fluttering my lips even though my mouth was closed. I hadn't realized that I was doing it, but caught myself as I woke up. No chinstrap can stop this as I was using one at the time.

Taping is a very individual thing. Some love it, some hate it, some are afraid of it. There are many threads here about taping. I like the 3M Micropore tape as it sticks very well - once - and doesn't irritate the skin. Some people cut a slit in it but I don't bother as it is already slightly porous. Some tape vertically but I have been using the single horizontal strip with a small section on the end folded over, which I think is the most common way to do it. You have to try it to see what you think. Just use a good quality tape made for sticking to skin and not duct tape or masking tape, etc.

[FUQE3]

Hopefully, you are using a brand new Swift FX. If it's 3 years old, the silicone has deteriorated, and that will contribute to your problems.

They seemed in perfect condition nonetheless, I have replaced them with the Aloha nasal pillows as of today. So not an issue

[kteague]

...Lansinoh ointment/cream... just don't use a big gob of it at bedtime because with your body heat the ointment will turn to slippery mess and you might end up with the nasal pillow in your ear (I did that once).

Thanks for the chuckle from that mental image Pugsy.

In view of the study not being able to fully determine an effective pressure, I think monitoring of data is especially important. A need to increase the pressure would be no surprise.

[FUQE3]

...Lansinoh ointment/cream... just don't use a big gob of it at bedtime because with your body heat the ointment will turn to slippery mess and you might end up with the nasal pillow in your ear (I did that once).

Thanks for the chuckle from that mental image Pugsy.

In view of the study not being able to fully determine an effective pressure, I think monitoring of data is especially important. A need to increase the pressure would be no surprise.

I guess the question is, how do I determine that an increase in pressure might be an improvement? What has been the catalyst for folks to have made any upward adjustments other than this is just not working?

I think I may have mentioned earlier that the first item of the Diagnostic Impressions from my CPAP Titration Sleep Study Report said:

It should be noted that due to the absence of sleep in the supine position and REM sleep at this pressure, the optimal pressure setting may have been underestimated.

How on earth do I determine how true that is and to what extent?