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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 Brandy Winteler on
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Alright, the therapist agreed that it was too big.
I took the advice of looking over the masks on cpap.com and it seemed that what might suit my needs most would be a hybrid, like the Mirage Liberty. I asked the therapist about it. She said they don't have those in stock and they'd have to be specially ordered. Then she remembered that someone had ordered a hybrid a while back and not taken it. She went to the back, or where ever they keep miscellaneous stuff, and found it. It isn't the Liberty, but this: . I tried it out with a couple different sizes of nasal pillows and the small mouth piece. I moved my head all over the place. I laid back in a recliner and moved a lot. I have to say, while I know I won't be sure until I have it in my own bed, it already seemed a lot better. It is significantly lighter, feels more secure and didn't give me issues when I moved. The therapist spent a lot of time with me making sure we had the straps on the headgear just right and really made sure it worked.
So, I'm really glad I looked at different types of masks online before going in and knew what to ask for. Otherwise, I would likely have just ended up with the small size of the same mask I had. That may work just fine, but I already think I will like this one much more. It was good to be able to go in more informed than I was when I went in the first time. Thank you all so much for your help! I'll let you know how this mask works in my bed.
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Sounds better, Brandy... let us know after you're rested.
Brandy Winteler said:Alright, the therapist agreed that it was too big.
I took the advice of looking over the masks on cpap.com and it seemed that what might suit my needs most would be a hybrid, like the Mirage Liberty. I asked the therapist about it. She said they don't have those in stock and they'd have to be specially ordered. Then she remembered that someone had ordered a hybrid a while back and not taken it. She went to the back, or where ever they keep miscellaneous stuff, and found it. It isn't the Liberty, but this: . I tried it out with a couple different sizes of nasal pillows and the small mouth piece. I moved my head all over the place. I laid back in a recliner and moved a lot. I have to say, while I know I won't be sure until I have it in my own bed, it already seemed a lot better. It is significantly lighter, feels more secure and didn't give me issues when I moved. The therapist spent a lot of time with me making sure we had the straps on the headgear just right and really made sure it worked.
So, I'm really glad I looked at different types of masks online before going in and knew what to ask for. Otherwise, I would likely have just ended up with the small size of the same mask I had. That may work just fine, but I already think I will like this one much more. It was good to be able to go in more informed than I was when I went in the first time. Thank you all so much for your help! I'll let you know how this mask works in my bed.
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So, I slept last night. I got up this morning 10 minutes before my alarm was set to go off. I was actually awake. I could sleep in any position pretty comfortably (other than the fact that I tend to sleep on my arm, which has nothing at all to do with the mask). So, I'm hoping that last night was a good indication of how this mask works for me because it was a good night.
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Great result, well done on communicating clearly what you wanted, and getting it! Hopefully this will set a chain of positive events in motion for you.
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hmm. . . the link to the mask didn't show up. I see what I did wrong. Here is the mask I got: Hybrid
Brandy Winteler said:Alright, the therapist agreed that it was too big.
I took the advice of looking over the masks on cpap.com and it seemed that what might suit my needs most would be a hybrid, like the Mirage Liberty. I asked the therapist about it. She said they don't have those in stock and they'd have to be specially ordered. Then she remembered that someone had ordered a hybrid a while back and not taken it. She went to the back, or where ever they keep miscellaneous stuff, and found it. It isn't the Liberty, but this: . I tried it out with a couple different sizes of nasal pillows and the small mouth piece. I moved my head all over the place. I laid back in a recliner and moved a lot. I have to say, while I know I won't be sure until I have it in my own bed, it already seemed a lot better. It is significantly lighter, feels more secure and didn't give me issues when I moved. The therapist spent a lot of time with me making sure we had the straps on the headgear just right and really made sure it worked.
So, I'm really glad I looked at different types of masks online before going in and knew what to ask for. Otherwise, I would likely have just ended up with the small size of the same mask I had. That may work just fine, but I already think I will like this one much more. It was good to be able to go in more informed than I was when I went in the first time. Thank you all so much for your help! I'll let you know how this mask works in my bed.
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I like the looks of the mask, Brandy. I think Mike uses it. It's like the Swift Mirage but you don't need a chinstrap. I have to look into it also...
Brandy Winteler said:hmm. . . the link to the mask didn't show up. I see what I did wrong. Here is the mask I got: Hybrid
Brandy Winteler said:Alright, the therapist agreed that it was too big.
I took the advice of looking over the masks on cpap.com and it seemed that what might suit my needs most would be a hybrid, like the Mirage Liberty. I asked the therapist about it. She said they don't have those in stock and they'd have to be specially ordered. Then she remembered that someone had ordered a hybrid a while back and not taken it. She went to the back, or where ever they keep miscellaneous stuff, and found it. It isn't the Liberty, but this: . I tried it out with a couple different sizes of nasal pillows and the small mouth piece. I moved my head all over the place. I laid back in a recliner and moved a lot. I have to say, while I know I won't be sure until I have it in my own bed, it already seemed a lot better. It is significantly lighter, feels more secure and didn't give me issues when I moved. The therapist spent a lot of time with me making sure we had the straps on the headgear just right and really made sure it worked.
So, I'm really glad I looked at different types of masks online before going in and knew what to ask for. Otherwise, I would likely have just ended up with the small size of the same mask I had. That may work just fine, but I already think I will like this one much more. It was good to be able to go in more informed than I was when I went in the first time. Thank you all so much for your help! I'll let you know how this mask works in my bed.
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Just an update -
It's been a month and a half now with the hybrid mask. It stays on, it is comfortable, works well. I did get a sore spot in my nose for a few days and wasn't able to use the mask so much, but it is better now and I am sleeping pretty well. I also got a humidifier for my machine, which makes a big difference too.
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Permalink Reply by sleepycarol on
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I am so glad Brandy that things are improving for you!!
It is my own believe that the mask is the key to great therapy. If the mask doesn't fit properly, then it causes issues that affect your sleep and therapy.
I don't know about your insurance coverage, but masks can last longer than their three month/six month replacement schedule. I have used the same mask now for close to three years without changing any component on it and it is still working for me.
Good luck and keep us posted!!
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Are you using Distilled water?
Brandy Winteler said:Just an update -
It's been a month and a half now with the hybrid mask. It stays on, it is comfortable, works well. I did get a sore spot in my nose for a few days and wasn't able to use the mask so much, but it is better now and I am sleeping pretty well. I also got a humidifier for my machine, which makes a big difference too.
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Yes, I am.
chris h said:Are you using Distilled water?
Brandy Winteler said:Just an update -
It's been a month and a half now with the hybrid mask. It stays on, it is comfortable, works well. I did get a sore spot in my nose for a few days and wasn't able to use the mask so much, but it is better now and I am sleeping pretty well. I also got a humidifier for my machine, which makes a big difference too.
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