My parents had a friend who lost her husband to untreated sleep apnea.  One night he went into a coma.  A year later they took him off life support.  In addition to losing their loved one, the family was bankrupted by the hospital bills.  Sad, sad story.

I had been trying for years to get my husband to go in for a sleep study.  Until he heard my parents tell this story over dinner one night, he refused to go.  Finally, he went and was diagnosed and given an Rx for a CPAP.  That was years ago, maybe five.  He has been a trooper about CPAP.  He is blessed to be able to fall asleep quickly, even with it on.  I, on the other hand, cannot sleep, in part due to the noise of the machine itself, but mostly because I am on high alert as I lay there next to him.  On a typical night, I lay awake until 3 a.m.  In addition to feeling frazzled from lack of sleep, I have struggled to remain positive and helpful to my husband.

After years of this, we started sleeping at opposite ends of the house.  This is something I wanted to avoid at all costs--we have been married 25+ years.  While I am now able to actually sleep, he does not wear his APAP when he is not sharing a bed with me.  And if I suggest it I am perceived as nagging.  

I would welcome any suggestions to get back on track.  Perhaps someone could suggest gear that is truly quiet.  He has a ResMed V8 AutoSet with Mirage II Nasal Pillows and I still find the sound of the air movement too loud to fall asleep.  I have tried earplugs myself, to no avail.  When we travel together and have to sleep in the same room he will use the APAP.  I will use earplugs and an eye mask but still cannot sleep unless I take an Ambien to drug myself.

Why are you on high alert?  What are you expecting?  The DeVilbliss IntelliPAP is newly on the market and the quietest on the market.  Masks vary in their loudness to and maybe he could try a different interface.

I am moving your question to the CPAP mask/CPAP machine questions topic where you will get more responses.

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

iamsleepy2 wrote:

My parents had a friend who lost her husband to untreated sleep apnea.  One night he went into a coma.  A year later they took him off life support.  In addition to losing their loved one, the family was bankrupted by the hospital bills.  Sad, sad story.

I had been trying for years to get my husband to go in for a sleep study.  Until he heard my parents tell this story over dinner one night, he refused to go.  Finally, he went and was diagnosed and given an Rx for a CPAP.  That was years ago, maybe five.  He has been a trooper about CPAP.  He is blessed to be able to fall asleep quickly, even with it on.  I, on the other hand, cannot sleep, in part due to the noise of the machine itself, but mostly because I am on high alert as I lay there next to him.  On a typical night, I lay awake until 3 a.m.  In addition to feeling frazzled from lack of sleep, I have struggled to remain positive and helpful to my husband.

After years of this, we started sleeping at opposite ends of the house.  This is something I wanted to avoid at all costs--we have been married 25+ years.  While I am now able to actually sleep, he does not wear his APAP when he is not sharing a bed with me.  And if I suggest it I am perceived as nagging.  

I would welcome any suggestions to get back on track.  Perhaps someone could suggest gear that is truly quiet.  He has a ResMed V8 AutoSet with Mirage II Nasal Pillows and I still find the sound of the air movement too loud to fall asleep.  I have tried earplugs myself, to no avail.  When we travel together and have to sleep in the same room he will use the APAP.  I will use earplugs and an eye mask but still cannot sleep unless I take an Ambien to drug myself.

Just a few questions. He is on CPAP 4/5 years ? Has he ever changed his mask, filters or hose ? Has he ever returned to the sleep doctor to have his pressure requirement checked ? At 5 years, his machine is in the autumn (even winter) of its life span, has he been in contact with his DME at any time ?

Vicki has suggested a quiter machine. Excessive noise usually comes from the mask, or hose through leaks, hence my questions.

Please post back.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

There are a subsets of patients with OSA that will not under any circumstance use their CPAP consistently (whether be due to comfort, being inconvenient, or just don't care).  It's important to remember, and always have in the back of the mind the definitive treatment for OSA:   tracheostomy.  While radical for many, it is the only surgical intervention that is guaranteed to cure OSA.  In addition, no CPAP is needed when sleeping.  during the day you function normally, capping it, allowing you to talk, and carry on normally.  At night, you uncap it and breathe through the trach.  While care of the trach is important (keeping it clean), it IS another viable treatment option in those patients that have OSA (esp mod/severe with other comorbid medical issues) and refuse to use PAP.

Has this ever been discussed with him as a possible option?

iamsleepy2 as crazy as this sounds maybe you are his incentive to use the CPAP, and without you being there why should he use it? I know it doesn't make any sense, but you said he uses it when your together in the motel or hotel when traveling, and you said he used to use it when you were sleeping together. Couples often sleep better when they are apart I have heard that, and I can even somewhat agree to it. But from what you have said it sounds like there is something more going on, as Vicki asked why are you on such high alert when sleeping together? it sounds like there is more than just sleep apnea going on,... for both of you. I do wish you luck and hope things work out for the BOTH of you!


_________________
White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

Vicki wrote:

Why are you on high alert?  What are you expecting?  The DeVilbliss IntelliPAP is newly on the market and the quietest on the market.  Masks vary in their loudness to and maybe he could try a different interface.

I am moving your question to the CPAP mask/CPAP machine questions topic where you will get more responses.

Vicki

Hi, Vicki. Thanks for your response and thanks also for transferring my question to the equipment forum.  I'll check over there to see what people suggest.  

I suppose the reason I am on "high alert" is that it is difficult for me to differentiate between "noise" that is life-threatening vs. normal equipment-related noise.  My mind processes any nighttime noise emanating from his sleeping as potentially threatening, thus I cannot tune it out sufficiently to relinquish my "nightwatchman" role.  Since this essentially goes on all night, it means I end up sleep-deprived myself.  Granted, that's not a life-threatening situation like his OSA.  But when it goes on for months--or years--it unquestionably affects my health. That's why we eventually agreed to sleep apart, as much as I hate doing that.

Quote:

Just a few questions. He is on CPAP 4/5 years ? Has he ever changed his mask, filters or hose ? Has he ever returned to the sleep doctor to have his pressure requirement checked ? At 5 years, his machine is in the autumn (even winter) of its life span, has he been in contact with his DME at any time ?

Vicki has suggested a quiter machine. Excessive noise usually comes from the mask, or hose through leaks, hence my questions.

Please post back.

Daniel.

Daniel, thanks so much for posting.  You raise some good points.

Yes, we have replaced the mask.  I'd say we try that about every 6 months.  I think they send a new hose with each one.  But I don't know about changing a filter, which must mean we haven't tried that.  I do notice a significant reduction in "noise" when he first gets a new mask.  But it seems to last only a short while, maybe a week or so.  Initially, he had one of those full face type masks.  That was with his original machine.  At some point a friend of mine suggested the machine and mask style he has now (her husband switched to that and they both found it to be a good move).  He had to get his doctor to write a letter to the DME/Insurance folks stating that it was medically necessary he switch from a CPAP to an APAP.  That's how he was able to get the second machine, the one he's been using for a couple of years.

He has never been back to the sleep doctor to recheck his pressure.  I do know his shirt collar size has increased during that time, probably from a 16 or 16 1/2 to a 17 1/5.  That might indicate his pressure needs are now different.  But since he's on an APAP (or would be if he used it) wouldn't that automatically regulate the pressure?

I think my chances of getting him to go back for another sleep study are slim to none.  He doesn't see a problem with the status quo.

Daniel, could you say a bit more about how to check for leaks in the mask and/or the hose?

MOS wrote:

There are a subsets of patients with OSA that will not under any circumstance use their CPAP consistently (whether be due to comfort, being inconvenient, or just don't care).  It's important to remember, and always have in the back of the mind the definitive treatment for OSA:   tracheostomy.  While radical for many, it is the only surgical intervention that is guaranteed to cure OSA.  In addition, no CPAP is needed when sleeping.  during the day you function normally, capping it, allowing you to talk, and carry on normally.  At night, you uncap it and breathe through the trach.  While care of the trach is important (keeping it clean), it IS another viable treatment option in those patients that have OSA (esp mod/severe with other comorbid medical issues) and refuse to use PAP.

Has this ever been discussed with him as a possible option?

MOS, thanks for posting.

No. It has not been discussed.  And I can assure you he would laugh me out of the room if I brought that up.  I know you were very sincere in your observation, and to me OSA is no laughing matter.  But I simply cannot pursue this line of reasoning with him.  It would only make him more defensive, and make me seem more unreasonable from his perspective.

White Beard wrote:

iamsleepy2 as crazy as this sounds maybe you are his incentive to use the CPAP, and without you being there why should he use it? I know it doesn't make any sense, but you said he uses it when your together in the motel or hotel when traveling, and you said he used to use it when you were sleeping together. Couples often sleep better when they are apart I have heard that, and I can even somewhat agree to it. But from what you have said it sounds like there is something more going on, as Vicki asked why are you on such high alert when sleeping together? it sounds like there is more than just sleep apnea going on,... for both of you. I do wish you luck and hope things work out for the BOTH of you!

Thanks for posting, White Beard.  

I'm not sure what you mean by "it sounds like there is something more going on."  If you could be a bit more specific I would be happy to respond to that.  I do get what you mean about me being his incentive, and I do agree that if we were sleeping in the same bed he would use the machine.  As I said, he doesn't seem to have an issue with using it--he falls asleep easily even with it on.  But when I travel (which I sometimes do for work) or when he travels without me (which he sometimes does for work) he is not using it.  I think he doesn't believe he is actually in danger from OSA, so he only uses it to pacify me and my concern for his health and well-being.  He is a very dedicated family man, so it is hard for me to understand why he doesn't realize he is at risk and is therefore putting his family at risk as well.  But I guess it's only natural for people to think that "it won't happen to me."

Vicki wrote:

The DeVilbliss IntelliPAP is newly on the market and the quietest on the market.  Masks vary in their loudness to and maybe he could try a different interface.

I am moving your question to the CPAP mask/CPAP machine questions topic where you will get more responses.

Vicki

Thanks, Vicki. I hope others will chime in with their experiences.  I know masks and machines are personal in nature and not everyone prefers the same ones.  But we have very little experience with the various options available.  Basically, we only saw the ones our DME had available.  I would be keen to hear about forum members' favorites.  I learned quite a bit tonight about the sound factor by reading this newsletter: http://www.cpap.com/DisplayNewsletter/44

Also, I did look up the DeVilbliss IntelliPAP.  It says it has a dBA rating of 26.  The APAP he has now, the ResMed Autoset V8, says it has a dBA rating of 24 dBA.  This confuses me.  I thought the lower the dBA number the quieter you could expect the machine to be. If this is true, wouldn't the machine he already has be quieter than the DeVilbliss IntelliPAP?  (Note: It is possible he has the original version of the ResMed AutoSet VA.  The 24 dBA is for the AutoSet II.  I could not find the decibel rating for the original AutoSet V8.  Anyone know?)

Quote:

Daniel, thanks so much for posting.  You raise some good points.

Yes, we have replaced the mask.  I'd say we try that about every 6 months.  I think they send a new hose with each one.  But I don't know about changing a filter, which must mean we haven't tried that.  I do notice a significant reduction in "noise" when he first gets a new mask.  But it seems to last only a short while, maybe a week or so.  Initially, he had one of those full face type masks.  That was with his original machine.  At some point a friend of mine suggested the machine and mask style he has now (her husband switched to that and they both found it to be a good move).  He had to get his doctor to write a letter to the DME/Insurance folks stating that it was medically necessary he switch from a CPAP to an APAP.  That's how he was able to get the second machine, the one he's been using for a couple of years.

Changing mask and hose every 6 months is good, and should ensure no leaks in the hose. Over a period of time the hose seems to 'degrade' and develop 'pin holes' which cause whistling noises. Best way to check for this is to turn on the cpap machine and run your hand up and down the outside of the hose. You will feel any leaks.

I note that he has changed masks........and they are sent to him ?? Does anyone from the DME call, or does your husband call to them ? A proper fitting is imperative. Regular changing of the filter is unlikely to make any changes to noise levels, just good hygiene.

I'm 'fairly' certain that the noise is coming from the mask........based on what you have posted (OK for a while with new mask, then deteriorating). It sounds like a leakage problem, and this goes back to 'fitting' of the mask. If he moves around (while sleeping) this could be a causative factor.

From your post, he is using a 'nasal mask'...............originally he had a full face mask ?? If he is a natural mouth breather, and is using a nasal mask..........air will gush out through his mouth (leak) and this can also increase noise levels.

These are just a few suggestions........

Quote:

He has never been back to the sleep doctor to recheck his pressure.  I do know his shirt collar size has increased during that time, probably from a 16 or 16 1/2 to a 17 1/5.  That might indicate his pressure needs are now different.  But since he's on an APAP (or would be if he used it) wouldn't that automatically regulate the pressure?

I think my chances of getting him to go back for another sleep study are slim to none.  He doesn't see a problem with the status quo.

Typical OSA sufferer..........'I'm OK Jack.........' The increase in collar size indicates that hios situation might be deteriorating.........certainly needs to be looked at by his sleep doctor (it's another symptom). The APAP will adjust to a pressure increase..........depending on it's settings. For titration the APAP is set at its maximum range (4 cms to 20 cms). Once the pressure setting has been titrated (say at 10 cms), the APAP can be set to 10/12 to allow for an increase (if required). It will not go above 12. To leave the machine at its max range usually results in the machine being a little sluggish in reacting to the higher pressure requirement..........and can leave the patient with an AHI above 5.

The more I read your post, I believe that your husbands apnoea remains untreated (and probably has been like this for some time, even while using cpap).

In some ways, he reminds me of myself in the early stages..........he hasn't accepted the seriousness of his condition.......started using XPAP to keep you quiet and probably can't understand (or doesn't want to) what all the fuss is about. Fairly typical.

You will have to get him back to the sleep doctor and you will have to attend with him. He needs to be made understand his situation.

I hope I have covered your questions, and haven't offended............if not, don't hesitate to post back.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

I'd tend to agree w/both Daniel and WhiteBeard. Hubby is using the APAP to please you and you desert him and sleep elsewhere so he doesn't bother w/the APAP in return.

Since hubby has had the APAP awhile it is most likely the Resmed S8 AutoSet Vantage and its rating is at 26 dcb. The Resmed S8 II AutoSet has only been on the US market since sometime after the first of 2008. I had the S8 AutoSet and I didn't find it noisy.

Medicare allowed a new hose EVERY MONTH until this year and now allows one every 3 months. Medicare also allows the replacement of JUST the cushion of the mask once a month, allows a new mask every 3 months (but NOT the headgear), headgear replacment is allowed every 6 months. Filters SHOULD be examined ONCE A MONTH, and replaced AT LEAST EVERY 6 MONTHS. Now that doesn't mean that this replacment scheduled MUST be followed - BUT - it does give you SOME idea of the expected lifespan of the various items. Skin oil can shorten the life span of a mask cushion; regular cleaning and the cleaning agents can shorten - or lengthen - the lifespan of the various items.

Do you know how to access the data from the previous night on the LCD screen of his AutoSet?? That might give you some clues as to how his therapy is doing and PROOF that he might need a new titration study - or at least convince his sleep doctor to order a change of therapy settings w/o your hubby having to be coerced into agreeing to another in-lab evaluation/titration.

Sleep w/him so he uses his AutoSet, at least for one solid week. 15-20 minutes after he turns it off when getting up in the morning, press the Left and Right buttons and hold for 3-4 seconds. Efficacy Data "should" pop up in the LCD screen. If it does, the Left button is to Enter, the Right button to Exit, the Up button to return to the previous screen and the Down button to proceed to the next screen. Write down the data that appears: Pressure, Leak, AHI, AI, number of hours, number of nights. Keep a daily tally of this data. You MUST check the night's data on the LCD screen BEFORE noon. You can NOT accidentally or intentionally change his therapy settings from this menu so relax about that.

These xPAPs work on an internal, 24 hour, noon to noon, clock. At noon the previous night's data is rolled over into the total averages and is no longer available available via the LCD screen.

IF Efficacy Data does NOT appear on your LCD screen w/that button combo press and hold, then discuss all this w/your family doctor and ask that HE write a script for your DME supplier to turn access to the advanced/detailed patient menu on. If he won't then then PM me and I wll tell you how to turn access to that advanced patient menu on. Hopefully that will NOT be necessary. It is MUCH BETTER if this can all be done w/your doctor's cooperation!

You NEED that data to help discover what the problem is and what might be done to correct it or to PROVE that your husband either needs a new sleep evaluation and titration OR AT THE VERY LEAST an at-home titration w/that AutoSet set in auto mode for at least one week, preferably two weeks and then a download of the data done and presented to the sleep doctor.

Good luck!!! At least you were able to convince your hubby to have that first evaluation and titration and to use his xPAP when you sleep w/him. I can't even get hubby to do an at-home ApneaLink screening much less an in-lab sleep evaluation!!! I brought an ApneaLink home from our local hospital's sleep lab and he absolutely refused to put it on for the ONE night!!! *sigh*


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

CrohnieToo wrote:

I'd tend to agree w/both Daniel and WhiteBeard. Hubby is using the APAP to please you and you desert him and sleep elsewhere so he doesn't bother w/the APAP in return.

Since hubby has had the APAP awhile it is most likely the Resmed S8 AutoSet Vantage and its rating is at 26 dcb. The

Do you know how to access the data from the previous night on the LCD screen of his AutoSet?? That might give you some clues as to how his therapy is doing and PROOF that he might need a new titration study - or at least convince his sleep doctor to order a change of therapy settings w/o your hubby having to be coerced into agreeing to another in-lab evaluation/titration.

Good luck!!! At least you were able to convince your hubby to have that first evaluation and titration and to use his xPAP when you sleep w/him. I can't even get hubby to do an at-home ApneaLink screening much less an in-lab sleep evaluation!!! I brought an ApneaLink home from our local hospital's sleep lab and he absolutely refused to put it on for the ONE night!!! *sigh*

Wow, CrohnieToo!  This is great information.  Thanks!  (How do you know all this if your DH is unwilling to give xPAP a try?)

I was not included in the original office visit, the sleep study, the follow-up office visit, or the equipment delivery/fitting.  I think that is DH's way of doing this (grudgingly) on his own terms.  I am thrilled to know that I can pull some useful data off the machine to "build a case" to get him to revisit the doctor (DH is an attorney, so I am well-versed in the art of building a case, although he still outwits me every time!)

I think what I'll do is get a sound soother CD I can play at night to mask (no pun intended) the whooshing sound of the xPap gear.  I'll suggest we sleep together to try that strategy and I'm sure he'll happily come back to our bed.  I can take Ambien for a week, if necessary, so I'll be able to pull the data in the a.m.  

I'll keep you posted.  It's so great to be able to benefit from the real-life experiences of other OSA folks here on this board.  I can't thank you all enough for being willing to share your insights with me.  I am encouraged.

I've learned it the HARD way. "I" have OSA and am on a VPAP (Resmed bi-level).

Ha! You might want to go a step further. BUY the ResScan 3.5 software and the Resmed cable reader. Then you simply insert the data card in the AutoSet, watch the LCD screen until it says copying is complete. Pull the card from the AutoSet and insert it into the cable reader which is plugged into your 'puter. Open the software, download the card's data to the software on your PC (gads! I hope you DON'T have a Mac! or have a Mac that will run Windows programs!) and print out the data which you can then send to his doctor or sleep doctor.

There's more than one way to skin a pig. Or is it a cow? Whatever. Now since the front end approach doesn't work if I could just figure out a DEVIOUS way to haul hubby into the sleep clinic ... !!!! *sigh*


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Daniel wrote:

I note that he has changed masks........and they are sent to him ?? Does anyone from the DME call, or does your husband call to them ? A proper fitting is imperative. Regular changing of the filter is unlikely to make any changes to noise levels, just good hygiene.

I'm 'fairly' certain that the noise is coming from the mask........based on what you have posted (OK for a while with new mask, then deteriorating). It sounds like a leakage problem, and this goes back to 'fitting' of the mask. If he moves around (while sleeping) this could be a causative factor.

From your post, he is using a 'nasal mask'...............originally he had a full face mask ?? If he is a natural mouth breather, and is using a nasal mask..........air will gush out through his mouth (leak) and this can also increase noise levels.

Really helpful observations, Daniel.  Thanks so much! I feel like I am finally starting to understand some of what is--and what should be--going on here.

Everytime he has gotten a new mask it is because I have initiated and coordinated it.  Once I drove out to Timbucktu to visit the DME supplier.  That's when he switched to the Mirage Swift II Nasal Pillows mask.  I try to help adjust this for him when it starts making a bunch of noise when he's sleeping, but since I don't really understand (have never been instructed) how it should work, I am grasping at straws.  He does breathe through his mouth some, so maybe this is not the best mask for him.  I do think he likes it better than the original full-face mask though as it is much less cumbersome.  

Quote:

Typical OSA sufferer..........'I'm OK Jack.........' The increase in collar size indicates that hios situation might be deteriorating.........certainly needs to be looked at by his sleep doctor (it's another symptom). The APAP will adjust to a pressure increase..........depending on it's settings. For titration the APAP is set at its maximum range (4 cms to 20 cms). Once the pressure setting has been titrated (say at 10 cms), the APAP can be set to 10/12 to allow for an increase (if required). It will not go above 12. To leave the machine at its max range usually results in the machine being a little sluggish in reacting to the higher pressure requirement..........and can leave the patient with an AHI above 5.

What is AHI?

Quote:

The more I read your post, I believe that your husbands apnoea remains untreated (and probably has been like this for some time, even while using cpap).

In some ways, he reminds me of myself in the early stages..........he hasn't accepted the seriousness of his condition.......started using XPAP to keep you quiet and probably can't understand (or doesn't want to) what all the fuss is about. Fairly typical.

I hope I have covered your questions, and haven't offended............if not, don't hesitate to post back.

Of course you haven't offended.  I am thrilled to have your comments.

What moved you from this place my DH is in to where you are now, being an active participant in your OSA and treatment?  Was it something your wife did that eventually got through to you?