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My husband was finally diagnosed with sleep apnea after a battalion of other tests, and treatments. He does the sleep study, and gets his diagnosis. We go to the DME supplier and get his machine, mask, tubing, etc. We get a lesson in how the thing works, how to clean it, and when to come in so the tech can read the card and see what is going on. 

First week was GREAT! He slept every single night with the mask, not a bit of trouble. His skin color came back, and he was acting like his old self. That lasted one whole week. In the three weeks since, it's been a battle every damned night to get him to keep that mask on. I don't feel like I can sleep, because I feel like I have to stay awake to keep an eye on him. He frequently tries to sleep on his stomach, which I try to deter, because he either shoves the mask so hard up against his face that it causes him pain (he has trigeminal neuralgia on the left side), or, it just slides off and winds up blowing air into his eye or against his cheek. So needless to say, we are back to square one, I have to nag him to get out of bed. By the time I get him up, he's left me 10 minutes to get him to work, and I am frustrated with that. I deal with chronic pain, so the stress from all this arguing and wrestling over that damned mask makes my pain worse, so here we are, two totally grouchy people in the morning. He's grumpy because he doesn't rest when he can't breathe, and I'm grumpy because I've been "arguing" with him all night long, and have just spent 20 minutes or so begging him to get up and get dressed before he makes himself late. 

 

So far, we have tried: 

Ocean nasal spray 30 minutes before bedtime (DME company recommended that)

I've adjusted the straps on his headgear - he had them way too tight and off center. 

We have lowered the temp on the heated air line, and dropped the humidity from 4.0 to 2.0 (suggested by the DME place)

 

Only other suggestions we have gotten is that he may need to go to a full face mask (which I don't think he will like - he hates the nasal pillows)

Buy and try a CPAP pillow. I don't mind buying one, but they are $60 here, and I don't want to spend $60 on a "mistake"

 

I am just about at my wit's end with this whole thing. I've been fighting all this time to get to the bottom of what was causing all these seemingly random issues, and now that we know, and can treat it, the treatment is there but not being used. I know that he's not doing it on purpose, more often than not, he's confused when our dog comes and gets me to come put his mask back on him. More often than not, he will argue with me about it in his sleep, telling me he doesn't have to wear it, he's not going to wear it, etc. I just want him to be well, and he's not going to get well if he won't use his equipment. 

I just don't know what to do from this point.....any advice?

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First, look at the positive side.  His skin color came meaning the therapy was working.  Since he is feeling better he has become more aware of the mask during his sleep time and the usual discomforts that come with wearing one are now apparent.  Second, his treatment is with air, not a chemical, so you are not feeding dollars to the drug companies. 

I don't like to wear the mask but CPAP therapy keeps me alive so that is where my priority is.  I tolerate it.

I was fitted with a Resmed Quattro face mask from the outgo and have over the years adapted to it.  Saying that, I sill have problems with the mask occasionally but like I said I adapt.  I have found that I need a mask liner like Quietus as well.  Not having used a nasal pillow mask I can't comment on it but it just looks uncomfortable.

There will be more comments on your situation I am sure so don't give up. 

 

 

Hi~I have a "used once" (really) contour CPAP pillow.  I would be happy to sell for $10 plus exact shipping.  This will sound silly, BUT~I am a nurse, house is clean & smoke free.  Pillow looks brand new.  Comes with pillow case.

He has to buy into the need for the cpap.  I hate to say this but you need to not be sleeping and watching him all night because you then end up sleep deprived and that helps no one.  Yes it sounds like he may need a different mask. 

When we get patients at the lab we have one night to find a mask, fit it, titrate to the proper pressure and convince the patient they really need the therapy.  Sometimes the mask we choose is not right for long term use by a specific patient. 

If he is a belly sleeper the right nasal pillows should work but if he is a mouth breather than a full face mask should work better. 

Whatever you do he has to take some responsibility for his therapy otherwise you are going to be arguing with him for a long time.  I tell you this from experience of living with men who have sleep disorders.  I finally had to let go and let them do what they needed to do.  My ex does not wear his CPAP and there is nothing I can do.  But he knows that if he wants to go back to using it he has a whole lot of support behind him.

In his case, Charles, there are drugs involved. Not for the apnea, but a month or so before he was diagnosed with the sleep apnea, he was diagnosed with trigeminal neuralgia, which affects the left side of his face. So when he forgets to take his meds, his maintenance levels drop, and I am certain that the headgear feels pretty uncomfortable, since the lightest touch makes him flinch like he was slapped on that side. So I think part of it, is that he forgets his meds, his face starts to hurt, he removes the thing that is hurting him, which just happens to be his headgear. He doesn't care for the full face mask, and he's not a mouth breather, but he does tend to want to sleep on his belly. 

Charles McDermott said:

First, look at the positive side.  His skin color came meaning the therapy was working.  Since he is feeling better he has become more aware of the mask during his sleep time and the usual discomforts that come with wearing one are now apparent.  Second, his treatment is with air, not a chemical, so you are not feeding dollars to the drug companies. 

I don't like to wear the mask but CPAP therapy keeps me alive so that is where my priority is.  I tolerate it.

I was fitted with a Resmed Quattro face mask from the outgo and have over the years adapted to it.  Saying that, I sill have problems with the mask occasionally but like I said I adapt.  I have found that I need a mask liner like Quietus as well.  Not having used a nasal pillow mask I can't comment on it but it just looks uncomfortable.

There will be more comments on your situation I am sure so don't give up. 

 

 

Ginny, would you contact me at my email about this - definitely interested!! My off board is studentfifty@gmail.com - just put CPAP pillow in the sub line, Thanks!! 



Ginny Edmundson said:

Hi~I have a "used once" (really) contour CPAP pillow.  I would be happy to sell for $10 plus exact shipping.  This will sound silly, BUT~I am a nurse, house is clean & smoke free.  Pillow looks brand new.  Comes with pillow case.

Hi Amy - 

In part I am up because of my own pain issues. The dog will try to signal him, but I think you could blow the building up and he wouldn't know, he sleeps that hard. So she wakes me up because he has his mask off. Of course, that goes both ways - when I have a new med, or I am sleeping especially sound (for me) she signals him until he checks on me to be sure that I am alright. 

I do think that you have a point - I don't think it's so much the mask, as it is the fact that he is trying to come to terms with the fact that he needs to rely on this piece of equipment, as well as accept a medication regimen to stay free of pain. 

I have just been frustrated by seeing how much improvement there was in such a short time (literally 48 hours) when we first got the machine and he used it every night. Then, in the following few weeks, it's been difficult to say the least. Maybe it's one of those male/female things, because believe me, if someone told me that by wearing a little mask and going to sleep would make me feel better, I'd do it if I had to sleep hanging from a coat hook by the back of my nightie. And after treating this random med issue, and that one, and finally getting down to sleep apnea, to me, it's like Eureka! we have finally found THE issue. He's had thyroid issues (treated), Low-T issues (treated with injections monthly) and then the trigeminal neuralgia, which is just hideously painful, but he's lucky; his has responded to drug therapy and he won't need surgery (yet), as long  as the nerve responds to the drug therapy. Our family Doctor has even told us that once we get the apnea under control, we may find that the other issues will right themselves and he can do away with two of the meds he is on. 
I'm torn because I want him to get better, but as you said, that really is beyond my control. He feels like I am "picking at him" and blaming him for something he's not intentionally doing. But I have been trying to explain, that in his case, it's doubly important for him to take his pain medication to keep that nerve stabilized, because when he doesn't, those nights are the ones where he has the thing off more than on. I think that is where the basis of my frustration comes from. 

Thank you for your comment though, you are right. I do need to stop watching him like a hawk. 

Amy said:

He has to buy into the need for the cpap.  I hate to say this but you need to not be sleeping and watching him all night because you then end up sleep deprived and that helps no one.  Yes it sounds like he may need a different mask. 

When we get patients at the lab we have one night to find a mask, fit it, titrate to the proper pressure and convince the patient they really need the therapy.  Sometimes the mask we choose is not right for long term use by a specific patient. 

If he is a belly sleeper the right nasal pillows should work but if he is a mouth breather than a full face mask should work better. 

Whatever you do he has to take some responsibility for his therapy otherwise you are going to be arguing with him for a long time.  I tell you this from experience of living with men who have sleep disorders.  I finally had to let go and let them do what they needed to do.  My ex does not wear his CPAP and there is nothing I can do.  But he knows that if he wants to go back to using it he has a whole lot of support behind him.

My doctor (finally) gave me sleeping meds for the first month, until I learned to deal with the mask wars. I was fighting the masks in the night.  I hated being on my back, and as soon as I felt better three weeks after being diagnosed, I began fighting with my mask. I went with the DME and kept going back. It took months of visitis to get it tweeked to fairly reasonable. Pillow did help, mine is a foam one that is like a Tempuredic mattress. Took weeks to adjust to it, but I will not travel without it. Nose pillows were not right for me. I like the mask over my nose only, not full face. But, I wanted to LIVE, and I was scared enough before diagnosis to KEEP ON KEEPING ON!  He needs to hear it is awful to make these changes, but one or two weeks is not time enough. If he can't adjust, back to the DME. They sound willing to help. And, as a wife and mother, I know you are trying to help in any way you can. The only way that it will work, is if he is compliant. Nagging makes the patient mad, and the wife crazy (more crazy?). This is a family challenge, as you well know, and my husband kept telling me that I had done many other really hard things in my life, so I could handle this. Go to the other room, sleep a few nights, and praise your man for trying to make it work. My father (same disorder) refused to keep trying. He is looking down, seeing my success now.

I am going to see our family doctor tomorrow, for my own check up and med check/refill, and I am going to ask about the possibility of maybe just even an OTC sleep med for a few weeks. He likes feeling better, and he is involved, he always asks me in the morning to check the stats and see how long he managed to keep it on. Both the family doctor and I have explained to him how serious this is, that having untreated apnea could cause him to have a heart failure, stroke, or any other "system failure" because his body is not getting the rest it needs. I think in part, the alternative of not wearing the mask scares the hell out of him, but then he feels guilty when he takes the mask off. 

I would just like to say thank you to everyone for all the suggestions and support, not only for him, but for me too. I was starting to feel like I was just this crazy, nagging, bitchy wife, and that really isn't who I am. I'm a scared and frustrated wife who isn't ready to lose her husband over something so easily treated. 

Hi Candy, It is a process getting everything set up just so. The contour pillow comes in three thicknesses 4,5,6. their are many other shape and configuration pillows I suggest you google cpap pillows and use what you see as a guide to make your own.They are shaped to minimise pushing the mask .A hose managment system is also helpful,It takes the hose up and suspends it so their is verry little pull when you move. Good Sleep,Chris

Candy de la Garrigue said:

I am going to see our family doctor tomorrow, for my own check up and med check/refill, and I am going to ask about the possibility of maybe just even an OTC sleep med for a few weeks. He likes feeling better, and he is involved, he always asks me in the morning to check the stats and see how long he managed to keep it on. Both the family doctor and I have explained to him how serious this is, that having untreated apnea could cause him to have a heart failure, stroke, or any other "system failure" because his body is not getting the rest it needs. I think in part, the alternative of not wearing the mask scares the hell out of him, but then he feels guilty when he takes the mask off. 

I would just like to say thank you to everyone for all the suggestions and support, not only for him, but for me too. I was starting to feel like I was just this crazy, nagging, bitchy wife, and that really isn't who I am. I'm a scared and frustrated wife who isn't ready to lose her husband over something so easily treated. 

Oh Don't give up. The nasal pillow are far easier than the mask IMO. Your husband must breathe from his nostrils if the nasal pillows are the method he is using. 

I swear it will save his life and just give it time and he will say it is remarkable. They do have other methods that the medical industry is now offering in place of the mask which is implants in the roof of the mouth. I do not personally recommend the mouth guard as it will tend to put stress on your mouth and eventually your mouth will stick out during the day too. This I know because if you wear a regular tooth mouth card like the sports people use, they have early stages of lines in the corner of their mouths. Pushing your bottom jaw away from its regular position could be more troublesome than the mask. JMO

I wear the nasal nostril set up and I am diligent about keeping distilled water as the humidity source and clean each day. The tubing use a touch of baby shampoo and swish with distilled water and then flush though. I found this place very nice to buy from. I have insurance that covers every six months of many items but I buy extra filters and nasal pillows. You have to find the size that feels great. And you will know when you fall asleep in just a few minutes. You husband may need the large pillows and try to read the book on your machine. They have online tech support on from the CPAP PEOPLE. dot com and they sure helped me. 

I think your husband is just frustrated and is concerned about how he appears to you too. It IS an emotional change to wear it in front of  your spouse. But remember, you will be jealous because while he is having sweet dreams, losing weight from good sleep and feeling alert and grand during the day....you will want one too! lols. Promise!! 

I never honestly thought about it from an attraction stand point. I know he thinks it makes him look silly, and we've had a chuckle or two about him trying to talk with it on, and he sounds congested. I'm jealous now - LOL. When I see him sleeping peacefully, and I know it's going to be another night of pacing the floors for me. I wish my condition could be cured as easily as having a machine force air into my lungs. 

I asked him about the nasal pillows, and he seems to be adamantly against even trying those, he says it feels like something being shoved into his nose. 

We have taken some tips from other folks locally with a mask - he now uses Ocean saline nasal spray, and we lowered his temp and humidity one night. I've also noticed that sometimes I have to shut the machine off manually, and turn it back on, because it's one of those auto-breather machines. He seems to "lose" his 20 minute ramp time periodically, but if I manually turn it on and then off, then back on, it comes back. 

 

I wipe the mask down inside and out daily while he's getting dressed for work. I clean the machine and make sure there is distilled water in the chamber for him. I read the manuals through and I check his stats, etc. He likes my being involved with it, and being able to learn all that stuff so quickly. 

 

We talked about it this evening, and I told him about this post and all the great advice we had been given. He was happy that I found this group to talk to. 

Beverly Carter said:

Oh Don't give up. The nasal pillow are far easier than the mask IMO. Your husband must breathe from his nostrils if the nasal pillows are the method he is using. 

I swear it will save his life and just give it time and he will say it is remarkable. They do have other methods that the medical industry is now offering in place of the mask which is implants in the roof of the mouth. I do not personally recommend the mouth guard as it will tend to put stress on your mouth and eventually your mouth will stick out during the day too. This I know because if you wear a regular tooth mouth card like the sports people use, they have early stages of lines in the corner of their mouths. Pushing your bottom jaw away from its regular position could be more troublesome than the mask. JMO

I wear the nasal nostril set up and I am diligent about keeping distilled water as the humidity source and clean each day. The tubing use a touch of baby shampoo and swish with distilled water and then flush though. I found this place very nice to buy from. I have insurance that covers every six months of many items but I buy extra filters and nasal pillows. You have to find the size that feels great. And you will know when you fall asleep in just a few minutes. You husband may need the large pillows and try to read the book on your machine. They have online tech support on from the CPAP PEOPLE. dot com and they sure helped me. 

I think your husband is just frustrated and is concerned about how he appears to you too. It IS an emotional change to wear it in front of  your spouse. But remember, you will be jealous because while he is having sweet dreams, losing weight from good sleep and feeling alert and grand during the day....you will want one too! lols. Promise!! 

Candy~I found after the 1st night of use that I adjusted better without using the ramp feature. When it was low it seemed like no air was coming in to breath.

Candy de la Garrigue said:

I never honestly thought about it from an attraction stand point. I know he thinks it makes him look silly, and we've had a chuckle or two about him trying to talk with it on, and he sounds congested. I'm jealous now - LOL. When I see him sleeping peacefully, and I know it's going to be another night of pacing the floors for me. I wish my condition could be cured as easily as having a machine force air into my lungs. 

I asked him about the nasal pillows, and he seems to be adamantly against even trying those, he says it feels like something being shoved into his nose. 

We have taken some tips from other folks locally with a mask - he now uses Ocean saline nasal spray, and we lowered his temp and humidity one night. I've also noticed that sometimes I have to shut the machine off manually, and turn it back on, because it's one of those auto-breather machines. He seems to "lose" his 20 minute ramp time periodically, but if I manually turn it on and then off, then back on, it comes back. 

 

I wipe the mask down inside and out daily while he's getting dressed for work. I clean the machine and make sure there is distilled water in the chamber for him. I read the manuals through and I check his stats, etc. He likes my being involved with it, and being able to learn all that stuff so quickly. 

 

We talked about it this evening, and I told him about this post and all the great advice we had been given. He was happy that I found this group to talk to. 

Beverly Carter said:

Oh Don't give up. The nasal pillow are far easier than the mask IMO. Your husband must breathe from his nostrils if the nasal pillows are the method he is using. 

I swear it will save his life and just give it time and he will say it is remarkable. They do have other methods that the medical industry is now offering in place of the mask which is implants in the roof of the mouth. I do not personally recommend the mouth guard as it will tend to put stress on your mouth and eventually your mouth will stick out during the day too. This I know because if you wear a regular tooth mouth card like the sports people use, they have early stages of lines in the corner of their mouths. Pushing your bottom jaw away from its regular position could be more troublesome than the mask. JMO

I wear the nasal nostril set up and I am diligent about keeping distilled water as the humidity source and clean each day. The tubing use a touch of baby shampoo and swish with distilled water and then flush though. I found this place very nice to buy from. I have insurance that covers every six months of many items but I buy extra filters and nasal pillows. You have to find the size that feels great. And you will know when you fall asleep in just a few minutes. You husband may need the large pillows and try to read the book on your machine. They have online tech support on from the CPAP PEOPLE. dot com and they sure helped me. 

I think your husband is just frustrated and is concerned about how he appears to you too. It IS an emotional change to wear it in front of  your spouse. But remember, you will be jealous because while he is having sweet dreams, losing weight from good sleep and feeling alert and grand during the day....you will want one too! lols. Promise!! 

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