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new to cpap, lots of questions
Hi. I'm Brandy. I just got my CPAP a couple weeks ago. DME provided, at rental, ResMed System One DS150. I have a ComfortGel Full mask. My pressure is set at 10cm.
In general, I am an active sleeper. I mostly sleep on my side, but not always.
My first couple weeks have been rough and I have some questions. First, here is my experience so far, in case it offers some insight to help with my questions (sorry it is so long. I ramble when I'm tired):
My first night, I had the mask too tight. Ended up with a sore nose and forehead. Second night was awful. I had loosened the mask, but it was rubbing on the already sore spots. 3rd night, I had a lot of leaks and just couldn't get it figured out. 4th night, I realized I had to stay on my back, which left me stiff and sore. Ok, so I won't be describing every night, but those really stuck out. By the end of the first week, I felt like I was getting the hang of it, despite a few really rough nights. I even had a day where I realized I was more awake than usual. Halfway through the next week, I was getting really dried out. I live in the desert, so have always had a dry mouth at night. It has been feeling worse, so I'm pretty sure I need a humidifier. While I have to rent the machine for insurance to cover it, the humidifier is only covered at purchase for $100. I will be seeing my doctor next week to get a rx for it. Ok, so, middle of the second week I thought I was doing pretty well, just very dry. The last couple nights have not been so great. Last night was terrible. I started off great. I did finally get to where I could lay on my side if I arranged my pillows just right. I would lay at the edge of one with a flatter one near it to support the weight of the mask so it didn't droop and leak. But then I got achy and moved. I ended up on my back and the mask immediately started to leak more than ever. I adjusted the mask, reseated it, felt for leaks and had it fine. I started to drift off and it moved out of place. I adjusted it again. I repeated this a few times. I stopped the machine, took the mask off, wiped off my face and mask with a washcloth in case I had gotten sweaty or oily and put it back on. It still leaked like crazy. I could hear and feel the air escaping and it drove me crazy through the night. I was a wreck all day because I was so tired I could barely keep my eyes open. I called the DME and got an appointment to fit the mask and/or exchange it. I get to exchange it once within 30 days. I go in this Friday afternoon (9/10).
So, my questions:
Should I exchange the mask? What should I get? If I exchange it, I am stuck with what I get until it is time for a new mask at the 3 month mark (in 2 1/2 more months). With the way I sleep, what masks would work best? Oh, I do open my mouth when I sleep. I also have allergies/sinus issues.
Are there any questions I should be asking the DME when I go in?
I see my doctor's physician's assistant next Thursday (would have to wait a while longer to see the doctor). I've seen him before and feel like he is at least as informed about my care as my doctor. What should I be asking him?
Is there anything else I should know? Anything else that might help? I've found a lot of helpful information here, but there is so much that I'm a little overwhelmed and not sure where to start. And I'm just really very tired.
In general, I am an active sleeper. I mostly sleep on my side, but not always.
My first couple weeks have been rough and I have some questions. First, here is my experience so far, in case it offers some insight to help with my questions (sorry it is so long. I ramble when I'm tired):
My first night, I had the mask too tight. Ended up with a sore nose and forehead. Second night was awful. I had loosened the mask, but it was rubbing on the already sore spots. 3rd night, I had a lot of leaks and just couldn't get it figured out. 4th night, I realized I had to stay on my back, which left me stiff and sore. Ok, so I won't be describing every night, but those really stuck out. By the end of the first week, I felt like I was getting the hang of it, despite a few really rough nights. I even had a day where I realized I was more awake than usual. Halfway through the next week, I was getting really dried out. I live in the desert, so have always had a dry mouth at night. It has been feeling worse, so I'm pretty sure I need a humidifier. While I have to rent the machine for insurance to cover it, the humidifier is only covered at purchase for $100. I will be seeing my doctor next week to get a rx for it. Ok, so, middle of the second week I thought I was doing pretty well, just very dry. The last couple nights have not been so great. Last night was terrible. I started off great. I did finally get to where I could lay on my side if I arranged my pillows just right. I would lay at the edge of one with a flatter one near it to support the weight of the mask so it didn't droop and leak. But then I got achy and moved. I ended up on my back and the mask immediately started to leak more than ever. I adjusted the mask, reseated it, felt for leaks and had it fine. I started to drift off and it moved out of place. I adjusted it again. I repeated this a few times. I stopped the machine, took the mask off, wiped off my face and mask with a washcloth in case I had gotten sweaty or oily and put it back on. It still leaked like crazy. I could hear and feel the air escaping and it drove me crazy through the night. I was a wreck all day because I was so tired I could barely keep my eyes open. I called the DME and got an appointment to fit the mask and/or exchange it. I get to exchange it once within 30 days. I go in this Friday afternoon (9/10).
So, my questions:
Should I exchange the mask? What should I get? If I exchange it, I am stuck with what I get until it is time for a new mask at the 3 month mark (in 2 1/2 more months). With the way I sleep, what masks would work best? Oh, I do open my mouth when I sleep. I also have allergies/sinus issues.
Are there any questions I should be asking the DME when I go in?
I see my doctor's physician's assistant next Thursday (would have to wait a while longer to see the doctor). I've seen him before and feel like he is at least as informed about my care as my doctor. What should I be asking him?
Is there anything else I should know? Anything else that might help? I've found a lot of helpful information here, but there is so much that I'm a little overwhelmed and not sure where to start. And I'm just really very tired.
Views: 184
Replies to This Discussion
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Permalink Reply by Mary Z on
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Brandy, see if the DME can let you try on different masks and ask for their advice on what might work. I never had any luck with the full comfort gel- too many leaks. I liked the Mirage Quattro FFM and used it for a long time before it eventually rubbed too hard on the bridge of my nose.
I presently use a Respironics FitLife Total Face Mask. It goes around the entire face- over the eyes and under the lips. I have been able to get a good fit with no air leaks most nights with that mask. I found that one on my own, but my DME let me try on many. Trouble is, until you're actually sleeping with it you don't know if it's going to work for you or not.
Hopefully some other members will weigh in with their best masks. Do you need a FFM (mouth breather), or can you try something else? Good luck tomorrow.
By the way, you are doing all the right things to get the mask you are wearing to work- experimenting with different levels of tightness, taking off/resetting mask, working with the pillow.
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Permalink Reply by Rooster on
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What make and model of mask are you using?
Since you are sometimes breathing through your mouth, you definitely need a full face mask (covers nose and mouth).
I sleep on my sides and tummy and have found that a wide variety of masks work well. However, there is a learning and adapting process that one must go through and that is part of what you are experiencing. Hose management is an important part of this process, as is proper mask fit and adjustment.
Study the information on full face masks here, http://www.cpap.com/cpap-masks.php, and see if anything appeals to you.
Ask the PA if you exhibited positional sleep apnea during your PSG. PSA means your apnea is more severe and/or requires more pressure to treat when backsleeping. People with PSA should develop a strategy to avoid backsleeping.
Which make/model machine do you have?
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Permalink Reply by 99 on
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suggestion
the day before give the doctor notice of the questions you are asking by giving advanced notice of the actual copy of the questions so he will be prepared instead of answering off the top of his head.
perhaps a letter with named doctor and the proposed questions popped into them
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Permalink Reply by Brandy Winteler on
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I'm sorry, in all my rambling the information at the top does get lost. I have a Respironics ResMed System One DS150 machine and a ComfortGel Full mask. My pressure is set at 10cm.
Also, my sleep study report said I should not sleep on my back.
For hose management, I am using a tip I think I found here. I've put a cup hook above my bed and use a hair scrunchy to hang my hose on it. That does help some.
Anyway, last night was worse still. I fussed with the thing for about 2 1/2 hours and finally just gave up. I managed over two weeks of sleeping with it all night every night, despite leaks and discomfort. Last night I just couldn't do it. I took it off and did my best to do without. I definitely breathe differently without it. I don't think I slept any worse, just differently. I don't know what went wrong the last few nights. I did have a few decent nights with few issues, but the last few nights have been next to impossible. I will try again tonight.
As for the total face mask suggestion, not so sure I can do that. I'm a little claustrophobic. As it was, I was nervous about the full mask. I don't think I can have my whole face covered.
Rooster said:What make and model of mask are you using?
Since you are sometimes breathing through your mouth, you definitely need a full face mask (covers nose and mouth).
I sleep on my sides and tummy and have found that a wide variety of masks work well. However, there is a learning and adapting process that one must go through and that is part of what you are experiencing. Hose management is an important part of this process, as is proper mask fit and adjustment.
Study the information on full face masks here, http://www.cpap.com/cpap-masks.php, and see if anything appeals to you.
Ask the PA if you exhibited positional sleep apnea during your PSG. PSA means your apnea is more severe and/or requires more pressure to treat when backsleeping. People with PSA should develop a strategy to avoid backsleeping.
Which make/model machine do you have?
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Hi Brandy,
Let me add to the great tips offered already.
I don't think changing masks at this stage is the best way forward, not immediately anyway. You say yourself it fits fine, when still. So in my mind, you should try and give the mask more slack.
Ed Baxter of Arden Innovations has invented the Hose Lift. It's an inexpensive but very clever bit of kit. With it, you suspend the hose above your head so it offers slack on the hose. Now when you change from side to back, there's enough room for the mask and hose to come along with you, without the mask pulling on the hose and dislodging off your face. You can achieve similar results with a DIY effort by hanging an elasticated cord off the ceiling or wall, or by draping the hose over the head board.
With regards to the sweat, oil and leaks, have a look at the RemZzzs liners, also a great American invention. They work wonders yet it's hard to believe as they are fundamentally so simplistic in their nature. Washing your face and mask before going to bed, and leaving sufficient time to dry, will go a long way too. And don't sleep too hot if you can, though living in the desert probably makes that one difficult.
A humidifier sounds very much on the cards for you, hope you get that sorted asap as it will make a big difference.
For the allergies and sinus issues, I recommend a third US invention, the SinuPulse Elite. Or at least, consider Dr Yvker's book "Sinus Survival" so you can make some dietary tweaks perhaps and improve things at the source. Sinus problems are no fun for CPAP users so a remedy will stand you in good stead for years to come. Apparently over 60% of CPAP users suffer from sinus problems and you don't have to be a rocket scientist to work out that a blocked nose has an impact on how well the CPAP can do its job. You can also ask your doc for a saline (salt water) spray, ideally drug free as some nasal sprays can be addictive. Table salt isn't the best to use so if you want to try something like a neti pot before trying the SinuPulse, do use a good quality natural salt without additives.
Lastly, there are many brands of special CPAP pillows that accommodate the mask to avoid it dislodging or causing pressure marks. SleePAP is one, Multi Aid CPAP Pillow is another. There are about half a dozen of these nowadays.
Sleeping on your back does tend to reduce sleep apnea so a good mattress will also make a good contribution to your CPAP therapy.
I realize most of my suggestions are products to try and buy but for free, you can try playing with routing the hose to add slack on the tube and avoid that mask being pulled off when you roll over. A steam bath (sink, towel and hot water required) can help with the sinus issues. Exercise is also great for the sinuses. The humidifier will also make a big difference on your nasal passages, far beyond tackling the dryness alone.
So keep going, try and get that humidifier, and hopefully you'll settle into a nice and satisfying routine soon.
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Thank you, James (and everyone else), for your tips. I do appreciate the advice. I will look into some of the sinus things as well as the RemZzzs.
I have actually already hung my hose up above my headboard using a hair scrunchy and cup hook. That seemed to help a little. I've looked at the special pillows and they are so expensive (most are $40-$60, which is just too much for a pillow, especially when so many reviews I've read say that the pillows pretty much stay in the closet), I really can't manage that right now. As it is, the $100 for the humidifier is daunting. We do keep our home very cool (I'm a little afraid to look at the electric bill I just got).
The only reason I am considering changing masks at this point is that I only have a 30 day window. I'm already past the halfway point on that. If I'm going to change it at all, I need to do it now or wait until it is time to get a new mask in a couple more months.
As for being still, it was working. But last night, even that didn't work. I tried loosening the mask a lot (to where it was practically not even on), then I gradually tightened it just a little at a time. I could not get it to work. It kept leaking air. If I did get it to stop leaking, even the slightest movement (like my face relaxing or twitching just a little) would cause it to leak or suddenly turn into a whoopie cushion. Any ideas on why something that did work suddenly just doesn't? I'm so frustrated. Last night, when I finally just had to give up, I was in tears because I was so frustrated and I was angry with myself for not being able to work with it.
James @ Intus said:Hi Brandy,
Let me add to the great tips offered already.
I don't think changing masks at this stage is the best way forward, not immediately anyway. You say yourself it fits fine, when still. So in my mind, you should try and give the mask more slack.
Ed Baxter of Arden Innovations has invented the Hose Lift. It's an inexpensive but very clever bit of kit. With it, you suspend the hose above your head so it offers slack on the hose. Now when you change from side to back, there's enough room for the mask and hose to come along with you, without the mask pulling on the hose and dislodging off your face. You can achieve similar results with a DIY effort by hanging an elasticated cord off the ceiling or wall, or by draping the hose over the head board.
With regards to the sweat, oil and leaks, have a look at the RemZzzs liners, also a great American invention. They work wonders yet it's hard to believe as they are fundamentally so simplistic in their nature. Washing your face and mask before going to bed, and leaving sufficient time to dry, will go a long way too. And don't sleep too hot if you can, though living in the desert probably makes that one difficult.
A humidifier sounds very much on the cards for you, hope you get that sorted asap as it will make a big difference.
For the allergies and sinus issues, I recommend a third US invention, the SinuPulse Elite. Or at least, consider Dr Yvker's book "Sinus Survival" so you can make some dietary tweaks perhaps and improve things at the source. Sinus problems are no fun for CPAP users so a remedy will stand you in good stead for years to come. Apparently over 60% of CPAP users suffer from sinus problems and you don't have to be a rocket scientist to work out that a blocked nose has an impact on how well the CPAP can do its job. You can also ask your doc for a saline (salt water) spray, ideally drug free as some nasal sprays can be addictive. Table salt isn't the best to use so if you want to try something like a neti pot before trying the SinuPulse, do use a good quality natural salt without additives.
Lastly, there are many brands of special CPAP pillows that accommodate the mask to avoid it dislodging or causing pressure marks. SleePAP is one, Multi Aid CPAP Pillow is another. There are about half a dozen of these nowadays.
Sleeping on your back does tend to reduce sleep apnea so a good mattress will also make a good contribution to your CPAP therapy.
I realize most of my suggestions are products to try and buy but for free, you can try playing with routing the hose to add slack on the tube and avoid that mask being pulled off when you roll over. A steam bath (sink, towel and hot water required) can help with the sinus issues. Exercise is also great for the sinuses. The humidifier will also make a big difference on your nasal passages, far beyond tackling the dryness alone.
So keep going, try and get that humidifier, and hopefully you'll settle into a nice and satisfying routine soon.
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Good post James.
I believe you misspoke in this sentence - Sleeping on your back does tend to reduce sleep apnea
Of course the opposite is true.
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Brandy, when you get that upset, which happens, I think it's better to put it aside for the night. This isn't supposed to be torture. It helps to use it on weekends during the day.(fun weekend!) Try to buy some time to get the right mask, tell them anything - it takes a while. I got lucky just needing the nasal pillows type.
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Hi Rooster,
Yes, that's right, got me there.
Worse on your back indeed, in most people anyway.
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Well, my appointment is this afternoon. I did try again last night. I made it 4 hours before having to put it aside. I think I managed to make it that long only because my husband is out of town, so the noises from the leaky mask were only bothering me. I could be a little more stubborn about it. I managed to fall asleep a couple times, but then my head would move and it would start leaking and blowing in my face and making a variety of noises. I swear it is just getting worse and I have no idea why. I did get it to stop for a good while last night, but only after tightening it uncomfortably. Even then, it eventually was a problem.
Having the bed to myself helped me to be able to take time to really think about what was going wrong though, since I wasn't thinking about how my moving around trying to adjust was affecting another person. I think the mask is just a little bit too big. It sits just a little too high on my nose (right at the top) and a little too low by my chin. From what I've read, it should be closer to my lower lip, right? Well, it isn't really. So, I will ask about that today. Perhaps that is all that the problem is.
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Brandy, yes, the line between one size and another can be very small. Good luck with the exchange. I'm usually one bit over a small, and one bit under a medium. LOL. All faces are not the same for sure.
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Permalink Reply by Banyon on
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Brandy Winteler said: Having the bed to myself helped me to be able to take time to really think about what was going wrong though, since I wasn't thinking about how my moving around trying to adjust was affecting another person.
I found that approach helpful to getting masks to work for me. By "that approach", I mean looking at the mask, headgear, tubing, bed posture, and thinking through all the potential problems and experimenting with headgear adjustments, mask sizes and mask types, and hose positions.
With new types of masks, I have placed my CPAP on a counter in front of a mirror and adjusted the headgear with the machine at therapeutic pressure, then tilted my head up, down, to the left, and to the right.
The first mask I tried was the wrong mask, but numbers two and three were the right ones. Many people have to try five or more masks before settlling on one. Sometimes that one is the first one they tried!
You are going through a learning process, gaining experience, and actually developing a skill at using CPAP.
Good luck.
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