help son ripping off mask in sleep

[sleepyjane]

My 34 year old very overweight son (but he did just lose 130 pounds recently) was diagnosed with severe sleep apnea a few months ago. He was told he was not breathing 85 times an hour.

He was put on an autobipap and a nasal mask and then he started having difficulties. He claims he never woke up through the night before nor did he feel tired or sleepy. Immediately upon using it, he started complaining of waking up 3-5 or more times a night and feeling very tired.

He told me now now he sleeps through the night but when he awakens the mask is never on having been ripped off sometime in his sleep, so who knows how long he is wearing it.

He says he used to (prior to starting the machine) wake up full of energy and with a spring in his step and now he wakes up dragging and tired.

I suggested using a chin strap or duct taping the straps on his face to prevent easy removal in his sleep which he rejected.

I would like to know of any suggestions..also things he can do to keep the mask on (he said it is tight and any tighter will cause lines on his face).

Also if he stopped using the machine, I am curious if he would returns to the refreshed sleep and not waking up at night or has the machine somehow altered that.

He says he feels he is able to function on less sleep genetically. He has lost 130 pounds so far due to exercise and eating less when told by another doctor several months ago (before doing the sleep study) he would be dead by age 40 if he did not change his lifestyle and lose weight (he had high blood pressure and prediabetes and high cholesterol. He was put on blood pressure meds and due to his weight loss and exercise all his numbers are way better now.

I am worried about him stopping breathing so often, though, and ripping off the mask. Please offer advice. Thanks.

[kteague]

SleepyJane,

What your son is experiencing with removing the mask while asleep is not uncommon. I did it for a few months and it is a common thread on here. Does his machine have a mask leak alarm? Although if he's that sound asleep he's not likely to hear it. There's a good chance time will take care of this issue. Till then he can try some things that might cause him to awaken when trying to remove the mask - but I'd spare the poor guy the duct tape!

A few ideas:
1) Put bandaids across any straps around the face - some that aren't easy-off.
2)Cover your headgear with a head wrap (scarf, du-rag, etc) of some sort that ends up tying around your face and under your chin like women in the 50's tied their scarves. (Do not wrap around neck! Not worth the risk.) If the wrap is snug enough he won't be able to remove the headgear without untying the scarf.
3)Loop a string around a strap on the headgear that wouldn't be easily damaged, then wind that string around a button or pin to the PJs top snug enough that removal of the headgear will yank the clothing.

Now, getting him to see the need to go thru all this is another story.

Is he following his data? That would help him identify and address any problems with his treatment's effectiveness. Posting his settings on here may glean some insight also. If he has lost a lot of that weight since his titration, his pressure could need adjusted.

All you can do is offer him good information, and ask him to deal with facts as far as his need for cpap therapy. Starting with machine data may just be enough.

It is unreasonable for him to expect a treatment to make him sleep and feel better when he is not using it. Gotta use it before you can deem it a failure.

Kathy

[lcook7281]

I suffer from the same problem. I think I could put Hudini to shame removing things in my sleep. When I looked at masks during the second go-around we had to look at comfort as well as ease of removal. We then added a chin strap to make it even move difficult.

Two mornings later I found my mask at my side and not on my face. So much for trying to prevent removal in my sleep.

However, I will highly recommend the Pur-sleep product. When reading last night he was still taking voluntters to try his product. i tend to be able to keep it on at least the minimum of 4 hours using the Pur-sleep and occasionally (like last night) keep it on all night.

Lisa

[GumbyCT]

Many of us, I know I wasn't accustomed to wearing something on my face, esp. during sleep. During my study I told my sleep tech, I don't wake up this much at home. He said oh but you do, you just don't know it. Explaining that each time I stopped breathing, I come out of each sleep level until eventually I begin to breath. Then the cycle continues over & over. We thought we were sleeping but we are not!

Did you say 85 times each hour? He stopped breathing? Let's see there are 60 minutes in an hour. Just how long CAN you hold your breath? ALL night long?

I tore my mask off many times during the early days. In fact I remember ripping it off during my sleep study. When I think about it, I was never told how to get it off, NEVER. So when you get that feeling you can't breath, hmmm off comes the mask, back to sleep you go. Well you think you are going back to sleep.

I am certainly no expert but I think he is in denial. Thinking he can take the easy way out by saying he felt fine before, but how could he if he was NOT breathing, how? Do you believe him?

I think you need to educate him on the health effects caused by apnea. He needs to understand what the outcome WILL be if he looses all that weight but never breathes again while sleeping.

How about his sleep doc, sleep center, or dme? Are they willing to help? You didn't mention if you are using CPAP?

For me it was getting a properly fitting mask then fixing the leaks to keep from waking me up before I was able to sleep thru the nite. It seems no one teaches those things (fixing leaks, etc.) and you have to do that on your own.

I still wake up 2-3 times each nite, but now I feel better in the morning.

I would say that if he is not feeling better, the therapy is not effective, yet.

Get the mask issues fixed then work on getting the right pressure, again.

Good Luck,
GumbyCT

[ozij]

My 34 year old very overweight son (but he did just lose 130 pounds recently) was diagnosed with severe sleep apnea a few months ago. He was told he was not breathing 85 times an hour.

He was put on an autobipap and a nasal mask and then he started having difficulties. He claims he never woke up through the night before nor did he feel tired or sleepy. Immediately upon using it, he started complaining of waking up 3-5 or more times a night and feeling very tired.

He told me now now he sleeps through the night but when he awakens the mask is never on having been ripped off sometime in his sleep, so who knows how long he is wearing it.

He says he used to (prior to starting the machine) wake up full of energy and with a spring in his step and now he wakes up dragging and tired.

I suggested using a chin strap or duct taping the straps on his face to prevent easy removal in his sleep which he rejected.

I would like to know of any suggestions..also things he can do to keep the mask on (he said it is tight and any tighter will cause lines on his face).

Also if he stopped using the machine, I am curious if he would returns to the refreshed sleep and not waking up at night or has the machine somehow altered that.

He says he feels he is able to function on less sleep genetically. He has lost 130 pounds so far due to exercise and eating less when told by another doctor several months ago (before doing the sleep study) he would be dead by age 40 if he did not change his lifestyle and lose weight (he had high blood pressure and prediabetes and high cholesterol. He was put on blood pressure meds and due to his weight loss and exercise all his numbers are way better now.

I am worried about him stopping breathing so often, though, and ripping off the mask. Please offer advice. Thanks.

sleepyjane,
I've marked in red what I think are signs that you son simply is not convinced that this is the right therapy for him.

I realize you are a caring worried mother, trying to do you best for your son, and I wish I could help you. But the therapy shouldn't become an issue between you and him. From what you've told us, we can all see that once he puts his mind to it, he can handle tough things - e.g. his weight loss. The fact that it is you posting, and not him indicates to me that he doesn't care so much about his "mask ripping". I guess he's probably feeling something like: "I've done so well to lose all this weight, why do I have to put up with this ridiculous therapy?" If it may be of any comfort to him - people who are not overweight at all also have sleep apnea.

The machine you mentioned - an auto bipap - is the brand name of a machine made by Respironics. If your son wants to monitor his own therapy, he can purchase software the will let him see how long the machine gave him therapy, and how long the mask wat not on his face. It will also inform him of how many events he has, and if the pressure setup is handling his events properly. He (and you) - can find links to the software here https://www.cpap.com/productpage/respir ... e-1.0.html. He will also need a card reader.

But it really has to be him doing the monitoring.

You mays suggest he wear mittens - the can hinder some of the mask removal.

It's your son who really has to believe the therapy is necessary and it's you son who has to want it to succeed.

Sometimes mask ripping is the result of the mask's inconveniece, sometimes its the result of the pressure being to high or too low. And sometimes it's the result of the fact that we're trying to learn a new way of sleeping. There are tons of tips for how to use masks - different tips for different masks - and it would be best for you son to ask for himself, and receive specific answers.

O.

[sleepyjane]

[quote="kteague"]SleepyJane,

What your son is experiencing with removing the mask while asleep is not uncommon. I did it for a few months and it is a common thread on here. Does his machine have a mask leak alarm? Although if he's that sound asleep he's not likely to hear it. There's a good chance time will take care of this issue. Till then he can try some things that might cause him to awaken when trying to remove the mask - but I'd spare the poor guy the duct tape!

A few ideas:
1) Put bandaids across any straps around the face - some that aren't easy-off.
2)Cover your headgear with a head wrap (scarf, du-rag, etc) of some sort that ends up tying around your face and under your chin like women in the 50's tied their scarves. (Do not wrap around neck! Not worth the risk.) If the wrap is snug enough he won't be able to remove the headgear without untying the scarf.
3)Loop a string around a strap on the headgear that wouldn't be easily damaged, then wind that string around a button or pin to the PJs top snug enough that removal of the headgear will yank the clothing.

Now, getting him to see the need to go thru all this is another story.

Is he following his data? That would help him identify and address any problems with his treatment's effectiveness. Posting his settings on here may glean some insight also. If he has lost a lot of that weight since his titration, his pressure could need adjusted.

All you can do is offer him good information, and ask him to deal with facts as far as his need for cpap therapy. Starting with machine data may just be enough.

It is unreasonable for him to expect a treatment to make him sleep and feel better when he is not using it. Gotta use it before you can deem it a failure.

Kathy

[sleepyjane]

I suffer from the same problem. I think I could put Hudini to shame removing things in my sleep. When I looked at masks during the second go-around we had to look at comfort as well as ease of removal. We then added a chin strap to make it even move difficult.

Two mornings later I found my mask at my side and not on my face. So much for trying to prevent removal in my sleep.

However, I will highly recommend the Pur-sleep product. When reading last night he was still taking volunteers to try his product. i tend to be able to keep it on at least the minimum of 4 hours using the Pur-sleep and occasionally (like last night) keep it on all night.

Lisa

thanks Lisa..sorry to hear you have the same problems but glad to hear there is some improvement..I bet if he did try chin straps or mittens, he might still find a way to rip it off as apparently he does not like it subconsciously being there..

I am not knowledgeable of the pursleep products at all. I started to goggle it and saw it was recalled. Is it dangerous to use..were all pursleep things recalled or just one..I really know next to nothing about it but am curious to know more about it and its purposes and if it is dangerous.

What about it causes you to keep the mask on more..it diffuses essential oils..is that right..are the oil put somewhere besides the humidifier. It also triggered me to ask a question about my own longtime use of essential oils and how I used them in regards to the machine.

does the pursleep stuff use real essential oils as opposed to synthetic ones that only smell good but have no medicinal value?

[sleepyjane]

[quote="GumbyCT"]Many of us, I know I wasn't accustomed to wearing something on my face, esp. during sleep. During my study I told my sleep tech, I don't wake up this much at home. He said oh but you do, you just don't know it. Explaining that each time I stopped breathing, I come out of each sleep level until eventually I begin to breath. Then the cycle continues over & over. We thought we were sleeping but we are not!

Did you say 85 times each hour? He stopped breathing? Let's see there are 60 minutes in an hour. Just how long CAN you hold your breath? ALL night long?

I tore my mask off many times during the early days. In fact I remember ripping it off during my sleep study. When I think about it, I was never told how to get it off, NEVER. So when you get that feeling you can't breath, hmmm off comes the mask, back to sleep you go. Well you think you are going back to sleep.

I am certainly no expert but I think he is in denial. Thinking he can take the easy way out by saying he felt fine before, but how could he if he was NOT breathing, how? Do you believe him?

I think you need to educate him on the health effects caused by apnea. He needs to understand what the outcome WILL be if he looses all that weight but never breathes again while sleeping.

How about his sleep doc, sleep center, or dme? Are they willing to help? You didn't mention if you are using CPAP?

For me it was getting a properly fitting mask then fixing the leaks to keep from waking me up before I was able to sleep thru the nite. It seems no one teaches those things (fixing leaks, etc.) and you have to do that on your own.

I still wake up 2-3 times each nite, but now I feel better in the morning.

I would say that if he is not feeling better, the therapy is not effective, yet.

Get the mask issues fixed then work on getting the right pressure, again.

Good Luck,
GumbyCT

[sleepyjane]

My 34 year old very overweight son (but he did just lose 130 pounds recently) was diagnosed with severe sleep apnea a few months ago. He was told he was not breathing 85 times an hour.

He was put on an autobipap and a nasal mask and then he started having difficulties. He claims he never woke up through the night before nor did he feel tired or sleepy. Immediately upon using it, he started complaining of waking up 3-5 or more times a night and feeling very tired.

He told me now now he sleeps through the night but when he awakens the mask is never on having been ripped off sometime in his sleep, so who knows how long he is wearing it.


thsnks o
He says he used to (prior to starting the machine) wake up full of energy and with a spring in his step and now he wakes up dragging and tired.

I suggested using a chin strap or duct taping the straps on his face to prevent easy removal in his sleep which he rejected.

I would like to know of any suggestions..also things he can do to keep the mask on (he said it is tight and any tighter will cause lines on his face).

Also if he stopped using the machine, I am curious if he would returns to the refreshed sleep and not waking up at night or has the machine somehow altered that.

He says he feels he is able to function on less sleep genetically. He has lost 130 pounds so far due to exercise and eating less when told by another doctor several months ago (before doing the sleep study) he would be dead by age 40 if he did not change his lifestyle and lose weight (he had high blood pressure and prediabetes and high cholesterol. He was put on blood pressure meds and due to his weight loss and exercise all his numbers are way better now.

I am worried about him stopping breathing so often, though, and ripping off the mask. Please offer advice. Thanks.

sleepyjane,
I've marked in red what I think are signs that you son simply is not convinced that this is the right therapy for him.

I realize you are a caring worried mother, trying to do you best for your son, and I wish I could help you. But the therapy shouldn't become an issue between you and him. From what you've told us, we can all see that once he puts his mind to it, he can handle tough things - e.g. his weight loss. The fact that it is you posting, and not him indicates to me that he doesn't care so much about his "mask ripping". I guess he's probably feeling something like: "I've done so well to lose all this weight, why do I have to put up with this ridiculous therapy?" If it may be of any comfort to him - people who are not overweight at all also have sleep apnea.

The machine you mentioned - an auto bipap - is the brand name of a machine made by Respironics. If your son wants to monitor his own therapy, he can purchase software the will let him see how long the machine gave him therapy, and how long the mask wat not on his face. It will also inform him of how many events he has, and if the pressure setup is handling his events properly. He (and you) - can find links to the software here https://www.cpap.com/productpage/respir ... e-1.0.html. He will also need a card reader.

But it really has to be him doing the monitoring.

You mays suggest he wear mittens - the can hinder some of the mask removal.

It's your son who really has to believe the therapy is necessary and it's you son who has to want it to succeed.

Sometimes mask ripping is the result of the mask's inconveniece, sometimes its the result of the pressure being to high or too low. And sometimes it's the result of the fact that we're trying to learn a new way of sleeping. There are tons of tips for how to use masks - different tips for different masks - and it would be best for you son to ask for himself, and receive specific answers.

O.

[ozij]

With a data reporting machine your son can learn quite a bit about the (formal) effectiveness of his therapy. He should see his AHI (the number of full or partial obstructions per hour) on the screen. The other thing he may get information about is his leak rate.

If he does sleep a few hours a once with the mask, an AHI higher than 5 indicates he isn't being properly treated. If he only sleep for an hour with the mask, the AHI is less informative.

I am one of many on this forum who used the info from the machine to make some changes in my pressure level - and they resulted in better therapy. This should preferable be done with a doctor's agreement - and it makes not sense at all that you son can't even see a doctor. It - or should have been - a doctor who prescribed the treatment after all.

Is it possible that they left the auto pressures wide open - ranging form 4 to 20 (I don't know if this can happen with bipaps)? If so, the bottom level maybe too low for him - he may be having events before the machine catches them. It's also possible that this machine's algorithm is simply not right for your son's breathing pattern - that also happens.

The one thing he shouldn't do it give the treatment up. The major issue in sleep apnea is not getting the amount of oxygen your body needs - and the harm done it by those choking episodes. Its not only a "sleep aid" that can be given up when it doesn't work. And yes, his restless sleeping could definitely be connected to his apneas.

How does he route the hose?

O.

[lcook7281]

Look in the message boards under Pur Sleep. The author of the post is Sleep Guy. Look for his posts as well. You shouldn't have to go back more than 24 hours to find his current thread.

Lisa

[SleepGuy]

The idea behind the pur-sleep products is simple: Pleasant aromatics have a calming effect on people. If a person finds a given smell to be pleasant then the use of a cpap will be more pleasant with that smell. Good smells can have a powerfully calming effect on the central nervous system and the emotional centers of the brain (the limbic system).

The pur-sleep products use only authentic essential oils, nothing synthetic. On top of that, pur-sleep uses only essential oils that the FDA has designated as being generally recognized as safe for human consumption. While that designation relates to use of essential oils in foods, it is relevant because ingestion presents more risks than inhalation.

When pur-sleep was initially introduced last spring, the product featured an in-line diffusion chamber. The diffusion chamber was discontinued after a few months pending further design and regulatory review. There were no accidents, incidents, etc.

Last June pur-sleep introduced a new diffusion format that is not connected to the equipment. It lightly scents the air as it's being drawn into the equipment. Cpap.com and others have picked up the product line and many people report that it helps them reduce or eliminate mask-off episodes. Nodzy on the forum here maintained a 30 day sleep journal using the products. He went from multiple mask off episodes a night to none with the products. He must be sleeping well because after being a daily poster I haven't seen him around much!