I'm new and need advice

[ReadyforRest]

Hi all. I'm new to this forum and to sleep apnea. I've been browsing around here for the past week looking for information and help, and I just wanted to say that I think this forum is a wonderful place. It's so nice to know there are others out there in the world who are having the same problems I'm having, and who are here to help and be supportive. I'm so thankful for the information you have here and all the helpful suggestions.

After having episodes of choking on my own saliva and gasping for air in my sleep in 2010 and 2011, my family doctor sent me for a sleep study at the Sleep Clinic in May of 2011. I was diagnosed with severe OSA. That was a year ago. I was upset about the diagnosis, and basically resisted going on the recommended treatment of CPAP. I did a little online research and thought, if gravity collapses the throat, then sleeping more upright might be my first, less-intrusive choice of treatment. So I bought an adjustable bed and started sleeping at a 30 degree angle. This worked pretty well for quite a while, but in the past few months it hasn't worked well at all. I've had new semi-choking episodes, my husband has seen me gasping for air, and particularly in the past month I've been walking around like a zombie from lack of sleep when I thought I was sleeping okay. So I finally bit the bullet and called the sleep clinic to tell them I've changed my mind and am willing to try this CPAP thing out. I'm desperate for sleep.

I started CPAP on Monday. I'm not sure how it works in your area, but here where I live, after you've done your sleep study and have the diagnosis, the sleep clinic/doctor gives you 2 options. They send the prescription to the equipment company of your choice and with the help of the company's RRT, you can either: purchase the equipment, or, you can do a one-month trial with the equipment. I chose to do the one-month trial to see how I tolerate it, and to learn what works best for me before I purchase anything. They tell me at the sleep clinic that this is what most people do.

The RRT loaned me the ResMed S8 Elite II CPAP machine with heated humidifier. I had no choice in that, you just get what they give you. At my initial appointment my RRT tried me with 2 different styles of mask, the ResMed Swift FX for her (nasal pillows) and the ResMed Mirage FX for her (nasal mask). I found the nasal pillows uncomfortable, squashing my nose up (my nose is soft). I also have a slightly deviated septum and small passages. So I didn't feel like I was getting enough air flow with the nasal pillows, at least not compared with the nasal mask which we had tried first. The nasal mask felt more comfortable (in the fitting at least) and I could actually feel the air coming in that I couldn't with the other mask.

I thought the first two nights went fairly well, considering that I've never done this before. First night I took about 20 min. to 1/2 hour to fall asleep, even though it felt very claustrophobic and just plain weird to have a mask on my nose, and have air flowing in constantly, and a hose, and a whistling machine, yuck. And yes, this thing whistles! But I woke up after 2 hours with my mouth falling open and blubbering air. Closed it again and fell back asleep for another 2 hours, but I woke with the same problem. Closed it and went to sleep for an hour and a half, so I had 5 1/2 hours sleep my first night. Woke up still tired, feeling I had better rest than in the past, but just not enough of it. The next night, I had about 6 hours sleep. I went to sleep in maybe 1/2 hour or more, but my husband yanked on the blankets a couple of times turning over which woke me up both times, and my mouth fell open once. Still, I did sleep, which I was surprised at. I thought I'd have a harder time.

But last night wasn't too good. I took forever to get to sleep, if I even got to sleep at all. If I did, it was mostly a very shallow sleep, where I awakened often, until I finally got up around 2 am and in frustration took the thing off my face, and went downstairs to nap in front of the tv in my recliner!

Now I'm not the type to give up on something. I fully intend to keep trying. It was just one bad night.

But I have a lot of questions. I'm having issues with gas in my stomach. The nasal mask fits pretty well and doesn't leak, but it hurts the bridge of my nose (it's red in the morning and hurst most of the day) and it presses down uncomfortably on my upper lip. Also, getting used to the sound and feel of the air pressure and listening to my own breathing inside the mask at night (which kept me awake last night) is difficult. Lots of adjustments to sleeping that I don't like.

And some of the answers my RRT has given me, or lack of answers, lol, and her responses to some things, have made me wonder if she's the right person to be getting advice and help from.

Thank you for being here,

Pat

[mirkee]

First of all, congratulations on taking the big step and trying CPAP!

I was diagnosed because I felt sleepy during the day and actually fell asleep at two red lights, one at a freeway offramp. This was early in the afternoon and it was scary. Once I went on CPAP, I realized how much better I felt and I have never looked back. That was over 20 years ago and I do not believe I have slept without my CPAP a single night. If I can't take my CPAP, I ain't going.

Things are probably not the same for you. I have a deviated septum from having broken my nose a couple of times. Extremely small throat opening. I use the same machine as you and a Fisher and Pykel sc405 mask. That mask typically is worn very loosely, especially at the bridge of the nose. For me, the strap at the bridge of the nose is just to keep the mask from sliding down my face. Tight or lose does not seem to matter. This mask is made so that you wear it loosely but there is a very thin flap or membrane on the outside of the mask. The air from the CPAP itself makes the membrane stick to your face and insure a tight seal. Tightening the straps does not help and, for me, it actually hinders the mask's operation. Most of the masks I have used in the last few years work on this principle, including some variations of the "Mirage" mask (I forget the name of the manufacturer). Don't think that tightening the mask will give you a better seal. That has not proven to be the case for me. I'm a little weird and actually enjoy the sound of the CPAP and air. It's like sleeping in a windstorm which I find soothing.

I hope your are able to stick with it and enjoy the benefits of CPAP. Keep trying new masks and new fittings until you find one you can live with.

[gertrude]

Welcome!

I too had trouble with the Mirage mask. I ended up with an open, bleeding sore on my nose. Didn't realize that I could return the mask within 30 days. When I saw the doc, she arranged for a new mask and I now have nasal pillows (Swift FX for her) and also the sleepweaver advanced mask that I got on my own from the internet. I just want to say that, like you, the nasal pillows seemed like a total no-go when I tried them on at the DME. And I like to sleep on my side and I have found they do tend to leak more in that position than the sleepweaver. But once i got the right sized nasal pillows they weren't so bad. So don't rule them out, especially if you are having trouble with a sore on your nose. Others here can give you suggestions for dealing with that -- the mask liner from Pad-a-Cheeks sounds promising and if I had known about that at the time I would have tried it. There are also some nose guards, I think. I tried the Rmzzzs mask liners, but they didn't help with the sore on the top of my nose, and they are expensive.

Hang in there.

[chunkyfrog]

Good for you.
If I could wear a Resmed nasal mask, I would ask for this one:
https://www.cpap.com/productpage/resmed ... dgear.html
They might be able to get this mask for you--especially for a tender schnozz. --just not at the price listed

[Pugsy]

Welcome to the forum.

The mask is probably the hardest part to all this because if one has an ill fitting and uncomfortable mask then they can't even begin to master learning to sleep with all this stuff attached to us.

The mouth dropping open issue...well that happens to a lot of people. Usually we suggest a chin strap to start with unless you simply can't breathe through your nose well enough if the mouth is always closed. Sometimes the open mouth stuff is just habit and reflex action that the body does as a response to apnea events.

So if you can normally breathe through your nose just fine during the day then you might be able to get a nasal interface mask to work for you with some help. If you simply are too congested and can't breathe through your nose during the day it isn't going to get any better at night and you need a full face mask.

Let's assume for now that you can breathe easily through your nose during the day and the mouth opening is more from habit.
Don't discount the nasal pillows totally based on one time with the tech. We don't know which nasal pillow mask he tried and I bet he had it too tight. Some are better than others. Too tight is the worst thing to do because it squishes the nose and causes pain and also it doesn't allow the pillows to inflate properly. Without proper inflation you will get the sensation of not getting enough air movement because it can't move like it is supposed to. Fitted properly with the proper size nasal pillow there is plenty of air movement for most people. There are videos about fitting various masks here.
http://www.cpaplibrary.com/mask-education

The over the nose masks can sure mess with the bridge of the nose. There are mask liners to help and there is even a cloth mask that many people just love. The Elan and the Advanced are the newest. There is a 30 day money back guarantee from the manufacturer. So you might give these a look to see if it might appeal to you.
https://www.cpap.com/cpap-masks/circadiance.php

[ReadyforRest]

First of all, congratulations on taking the big step and trying CPAP!

I was diagnosed because I felt sleepy during the day and actually fell asleep at two red lights, one at a freeway offramp. This was early in the afternoon and it was scary. Once I went on CPAP, I realized how much better I felt and I have never looked back. That was over 20 years ago and I do not believe I have slept without my CPAP a single night. If I can't take my CPAP, I ain't going.

Things are probably not the same for you. I have a deviated septum from having broken my nose a couple of times. Extremely small throat opening. I use the same machine as you and a Fisher and Pykel sc405 mask. That mask typically is worn very loosely, especially at the bridge of the nose. For me, the strap at the bridge of the nose is just to keep the mask from sliding down my face. Tight or lose does not seem to matter. This mask is made so that you wear it loosely but there is a very thin flap or membrane on the outside of the mask. The air from the CPAP itself makes the membrane stick to your face and insure a tight seal. Tightening the straps does not help and, for me, it actually hinders the mask's operation. Most of the masks I have used in the last few years work on this principle, including some variations of the "Mirage" mask (I forget the name of the manufacturer). Don't think that tightening the mask will give you a better seal. That has not proven to be the case for me. I'm a little weird and actually enjoy the sound of the CPAP and air. It's like sleeping in a windstorm which I find soothing.

I hope your are able to stick with it and enjoy the benefits of CPAP. Keep trying new masks and new fittings until you find one you can live with.

Thanks, mirkee. Does your machine whistle? This one is old, 2008, and it makes a lot of whistling noises all night. I guess it's because it's an older model? I'm thinking of asking my RRT to loan me another one that is quieter. I called her on Tuesday to give her an update on how my first night went. I complained about my nose hurting from the nasal mask, and she said to cut a make-up pad or a kleenex into a small size and put it on the bridge of my nose to pad it up. I said, won't that break the seal? She assured me that it wouldn't. I tried that all week with a thinly folded piece of kleenex, but the bridge of my nose is still red and hurts each morning. Last night I used a slightly thicker square of kleenex because thinner wasn't working. But then I DID have leaking, so in the dark I took it out, and now have a really red area on the bridge of my nose! So much for her advice.

Also, when she fitted me with the nasal pillow mask,it was very tight. So tight that it pushed my nostrils up. And I didn't feel like I was getting enough air through it. Not like the nasal mask. I'd like to try nasal pillows thoughm because maybe it won't feel so claustrophobic, and won't press on my upper lip or the bridge of my nose. But I worry that I won't be able to breathe as well with my deviated septum.

[ReadyforRest]

Welcome!

I too had trouble with the Mirage mask. I ended up with an open, bleeding sore on my nose. Didn't realize that I could return the mask within 30 days. When I saw the doc, she arranged for a new mask and I now have nasal pillows (Swift FX for her) and also the sleepweaver advanced mask that I got on my own from the internet. I just want to say that, like you, the nasal pillows seemed like a total no-go when I tried them on at the DME. And I like to sleep on my side and I have found they do tend to leak more in that position than the sleepweaver. But once i got the right sized nasal pillows they weren't so bad. So don't rule them out, especially if you are having trouble with a sore on your nose. Others here can give you suggestions for dealing with that -- the mask liner from Pad-a-Cheeks sounds promising and if I had known about that at the time I would have tried it. There are also some nose guards, I think. I tried the Rmzzzs mask liners, but they didn't help with the sore on the top of my nose, and they are expensive.

Hang in there.

Thanks for the welcome, gertrude.

I don't actually have a sore on my nose, just a red spot that hurts a bit. But I'm sure that if I continue with this mask, it will get worse. I asked my RRT about the Sleepweaver by Circadiance, but she said they don't even carry it because it has leaking problems. I thought that being made from cloth, it would be more comfortable than anything else. Does yours leak? She said that she could order me one, but they don't keep them in stock. And she kind of discouraged me from trying it.

[ReadyforRest]

Good for you.
If I could wear a Resmed nasal mask, I would ask for this one:
https://www.cpap.com/productpage/resmed ... dgear.html
They might be able to get this mask for you--especially for a tender schnozz. --just not at the price listed

Thanks for the link, chunkyfrog. I'll ask about it. My niece's husband uses a gel mask and he really likes it.

[BlackSpinner]

Thanks, mirkee. Does your machine whistle? This one is old, 2008, and it makes a lot of whistling noises all night. I guess it's because it's an older model? I'm thinking of asking my RRT to loan me another one that is quieter. I called her on Tuesday to give her an update on how my first night went. I complained about my nose hurting from the nasal mask, and she said to cut a make-up pad or a kleenex into a small size and put it on the bridge of my nose to pad it up. I said, won't that break the seal? She assured me that it wouldn't. I tried that all week with a thinly folded piece of kleenex, but the bridge of my nose is still red and hurts each morning. Last night I used a slightly thicker square of kleenex because thinner wasn't working. But then I DID have leaking, so in the dark I took it out, and now have a really red area on the bridge of my nose! So much for her advice.

Also, when she fitted me with the nasal pillow mask,it was very tight. So tight that it pushed my nostrils up. And I didn't feel like I was getting enough air through it. Not like the nasal mask. I'd like to try nasal pillows thoughm because maybe it won't feel so claustrophobic, and won't press on my upper lip or the bridge of my nose. But I worry that I won't be able to breathe as well with my deviated septum.

I have the same machine - it doesn't whistle. The only time it did, it was because the hose was punctured.



When you make a liner for a mask you should make one for the entire mask. Use some old cotton knit fabric , lay the mask on it and cut out around it leaving a inch of space. Cut out a small triangle for the nose , fit and adjust. Since your nose is damaged I would add a piece of "moleskin" to the mask.

If you can use the nasal mask you can used the pillows. They really don't have to be that tight. If you feel they might pop out then make a strap from lingerie elastic to go around the head and across the pillows.

The elite has ahi data available. You can download the manual from the internet or some will email it to you.

[ReadyforRest]

Welcome to the forum.

The mask is probably the hardest part to all this because if one has an ill fitting and uncomfortable mask then they can't even begin to master learning to sleep with all this stuff attached to us.

The mouth dropping open issue...well that happens to a lot of people. Usually we suggest a chin strap to start with unless you simply can't breathe through your nose well enough if the mouth is always closed. Sometimes the open mouth stuff is just habit and reflex action that the body does as a response to apnea events.

So if you can normally breathe through your nose just fine during the day then you might be able to get a nasal interface mask to work for you with some help. If you simply are too congested and can't breathe through your nose during the day it isn't going to get any better at night and you need a full face mask.

Let's assume for now that you can breathe easily through your nose during the day and the mouth opening is more from habit.
Don't discount the nasal pillows totally based on one time with the tech. We don't know which nasal pillow mask he tried and I bet he had it too tight. Some are better than others. Too tight is the worst thing to do because it squishes the nose and causes pain and also it doesn't allow the pillows to inflate properly. Without proper inflation you will get the sensation of not getting enough air movement because it can't move like it is supposed to. Fitted properly with the proper size nasal pillow there is plenty of air movement for most people. There are videos about fitting various masks here.
http://www.cpaplibrary.com/mask-education

The over the nose masks can sure mess with the bridge of the nose. There are mask liners to help and there is even a cloth mask that many people just love. The Elan and the Advanced are the newest. There is a 30 day money back guarantee from the manufacturer. So you might give these a look to see if it might appeal to you.
https://www.cpap.com/cpap-masks/circadiance.php

Thank you for the welcome, Pugsy.

Yes, I can breathe through my nose … usually … and at night I try to keep it closed. But you can’t help what you do in your sleep, lol. My mouth just drops open due to gravity. I sleep on a slant, because of acid reflux and the apnea issues, on my adjustable bed (which I love), but since I’ve been using the mask, I don’t sleep on as high a slant as before. I just drop it down a bit lower now. But the jaw still drops open a bit from muscles relaxing, that sort of thing.

I told my RRT that when this happens, the air makes my lips blubber and wakes me up. I would really like a solid sleep, and this is just one more thing that interferes with it. I asked her about a chin strap, and she said they don’t work. I mentioned it a couple of times, but each time she poo-poo’d it, saying that 90% of their clients are able to learn to keep their mouths closed when sleeping. Well even so, I’d still like to try it, because I don’t want to be awakened by my mouth dropping open every couple of hours. It’s annoying, especially when this whole thing is difficult enough to adjust to.

I asked her if I should try a full mask. She thought I should go with the smallest that I can tolerate, since it’s less on my face and easier to adjust to. And I agree with that way of thinking, if I can do it.

My impression is that she is a bit rigid in her thinking and approach … but maybe I’m wrong. It’s only my first week and I have a whole lot to learn.

Thank you for the links, Pugsy. I’ve been looking them over. I think on Monday I’ll call her and set up another appointment to iron out some of these problems.


Thursday night was better. I slept 6 ½ hours, but not solid. I kept waking up for various reasons, readjustments, mouth opening, etc. But went back to sleep again. Still tired, but not as groggy as before treatment.

Last night (Friday) it took forever to fall asleep, maybe an hour. Kept listening to the sound of the air, louder on intake, quieter on exhalations. Over and over. Then after falling to sleep, I kept waking up off and on. The thicker nose padding wasn’t working, was causing leaks, so I took that out entirely. Didn’t want to get up, so went without anything padding my nose. That didn’t stop the leaking, even slight readjustments, so I tightened the straps and finally they stopped. And went to sleep, so maybe got 5 hours sleep, but not solid. OH for a solid night of sleep with no wake-ups!

[robysue]

I told my RRT that when this happens, the air makes my lips blubber and wakes me up. I would really like a solid sleep, and this is just one more thing that interferes with it. I asked her about a chin strap, and she said they don’t work. I mentioned it a couple of times, but each time she poo-poo’d it, saying that 90% of their clients are able to learn to keep their mouths closed when sleeping. Well even so, I’d still like to try it, because I don’t want to be awakened by my mouth dropping open every couple of hours. It’s annoying, especially when this whole thing is difficult enough to adjust to.

You are you. You may be in that 90% (eventually) or you might land in that 10% minority of folks who don't learn the tricks to keeping the mouth shut. And right now there's no way of predicting which group you will eventually belong to and you are legitimately annoyed at a problem that has a potential fix (the chinstrap) that the RRT won't sell to you.

I bet the RRT has no first hand experience---in her own bed---with the kind of problem you are experiencing. Since she won't sell you the chin strap, buy it on line (or from another DME). They are not that expensive.

My impression is that she is a bit rigid in her thinking and approach … but maybe I’m wrong. It’s only my first week and I have a whole lot to learn.

She's more than "a bit" rigid. Next time you talk to her ask her how many times has she actually slept with a mask on her nose. If she's not a hosehead, tell her politely, but firmly, that you have reason to believe that a chin strap is worth a try in spite of what she thinks about the in theory.

[pats]

I told my RRT that when this happens, the air makes my lips blubber and wakes me up. I would really like a solid sleep, and this is just one more thing that interferes with it. I asked her about a chin strap, and she said they don’t work. I mentioned it a couple of times, but each time she poo-poo’d it, saying that 90% of their clients are able to learn to keep their mouths closed when sleeping. Well even so, I’d still like to try it, because I don’t want to be awakened by my mouth dropping open every couple of hours. It’s annoying, especially when this whole thing is difficult enough to adjust to.

When I started sleeping with a nasal pillow mask, I would wake up during the night with a dry mouth and had major leaks. I started using a chin strap. Recently, I've been able to stop wearing the chin-strap, with no dry mouth or major leaks. I think the chin-strap helped me get into the habit of keeping my mouth shut when asleep.

A chin strap may or may not help you, but it is certainly worth trying.

[Pugsy]

Like Robysue said. Your DME tech person is more than a little rigid.

Yes, the SleepyWeaver is known to have unacceptable leaks for many but we have a lot of members here on this forum who use it (even the older more leaky model) successfully and the leaks aren't compromising therapy or sleep.
With any mask out there there will be people who have success and people who have failure. We aren't all the same.
Chin straps are quite sufficient for some people. For others not sufficient support. You don't know which category you will be in unless you try. You can easily make a homemade chin strap and see if it is even possible. An ace wrap or stretchy headband or even a sweatband will give you a bit of an idea. Might not be perfect but it could at least give you an idea if a sturdier chin strap would help. I got a cheap $1 sweatband at Walmart once (in the sporting goods section) and if it had been a tiny bit wider it would have worked perfectly.

Nasal pillow masks when fitted properly are extremely comfortable and easy to breathe with. Sounds like the tech had your trial with them way too tight. That is the most common error made. Looser is often better with most of the masks (even the full face masks) out there. They need to inflate properly to seal properly.

In short...try whatever you want to try. Will there be failures? Most likely but even with failures we learn something so I don't count them as total failures. Just something that didn't work out and I learned something and move on.

[ReadyforRest]

pats ... I think it's worth trying too. I woke up with a dry mouth this morning.

robysue ... My tech told me that she doesn't have OSA and hasn't had experience sleeping with a mask. So yes, I was thinking the exact same thing about her. What can she really know about how it feels?

Here's a bit of what I experienced with her. I called the company to ask for some advice (and to kind of vett them before choosing to go there), gave them my name and number and they said the owner (male) would call me back. I was called back by her not him, which was fine because she seemed very understanding and nice on the phone, and after talking to her for a while (she spent a long time on the phone with me answering questions) she seemed knowledgeable too. I thought, great, I've found a good RRT. So I booked the appointment with her.

When I got in there for my appt. she didn't remember talking to me. HUH? Okay, then she looks at the form I filled out and says, "you're 61 (I'm 62)." She says, "I'd never know it, you look great!" She added, "I'm 3 years younger than you." She's tall and while not heavy at all, was maybe a bit thicker than I am. I on the other hand am 5'4" tall and average weight, not heavy. I try to take care of myself, but I'm by no means perfect. But right from the start there was this issue that she raised, almost an envy thing ... something that surprised me, because this is supposed to be a professional setting, and she's coming across like immediately there's some kind of competition in the looks department.

Then while fitting the nose mask on me, she says, "you have a barbie-nose." uh ... okay. Never had that said about my nose before. And it's certainly NOT a barbie nose ... and if I was an RRT, I would not tend to use that kind of terminology to describe a client's nose. Anyway, it kind of set a tone for the meeting.

She also said at one point, "I'll bet you don't wear glasses either." I quickly piped up and said that I did. I'm absolutely not perfect. And made a point to tell her that I have acid reflux and a hiatus hernia. I also have several other things that I've been through over the past 10 years, health-wise, but at that point I wasn't about to tell her my whole medical history just so she wouldn't feel somehow intimidated or something. Yes I recently lost aobut 25 lbs and now look pretty good for my age, don't smoke, try to look after myself ... but when you visit an RRT, you hope that those things will be taken as good things and not as things that she will take personally and compare herself with. Sheesh!

[gertrude]

I asked my RRT about the Sleepweaver by Circadiance, but she said they don't even carry it because it has leaking problems. I thought that being made from cloth, it would be more comfortable than anything else. Does yours leak? She said that she could order me one, but they don't keep them in stock. And she kind of discouraged me from trying it.

My sleepweaver (advanced) does not leak for me at my pressures of 6 - 10. In fact, I have far fewer leaks with it than with my Swift FX nasal pillows. The Swift tends to dislodge when I turn on my side and then the leaks wake me up. The sleepweaver just mushes into the pillow and I never notice. Neither mask leaks so much that it is interferring with my therapy (I think) but the sleepweaver gives me fewer wake-ups from the fit. The Swift has less headgear on my face, however, and I'm going back and forth between these two masks. (And thinking about trying the pilairo or aloha when I am due for a replacement that will qualify with insurance.) I did have one night early on when I over-tightened the sleepweaver and got a red mark on my nose. So it is possible even with the fabric. But I had it way too tight and haven't had any trouble since. The fitting CD that came with the mask is very helpful.

I had the same experience as you with "professional" advice about the sleepweaver. The DME didn't even carry it. The rep told me "We like the Swift FX." Yes, but it is my face, not yours. The local CPAP supply store had one, but with a no return policy on it, and I couldn't try it on before I bought it I found one much cheaper online at cpap.com. And I could return it in 30 days if I didn't like it. As I was paying myself, the choice was a no brainer.

There is also a new model of sleepweaver nasal mask call the Elan, which has less headgear. As you can see, you can do lots of experimenting, funds permitting. Since all of these take some adjustment, unless you know right away that you hate it, I suggest giving whatever you try at least a week before drawing conclusions.