87 yo fem trying to use Respironics BiPAP unit

[mayondair]

You will want to get Sleepyhead up and running and gather some data for a few nights, then post some graphs. It looks like they have increased the pressure to deal with obstructive events, I'll let others more knowledgeable about ASV comment more. One thing you want to look at, is she only sleeping about 6 and a half hours a night? She needs to use the machine all night, and for naps. Anytime she sleeps. As for mask comfort, Pad a Cheek makes a nice liner with a forehead pad attached for the quatro ff. Comfort is important. You may also want to consider hanging the hose, or using a cozy if she prefers having it under the covers. Patience! It looks like things are going in the right direction, and her docs are attentive. Kathy

[Pugsy]

You will want to get Sleepyhead up and running and gather some data for a few nights, then post some graphs

Unfortunately SleepyHead is not compatible with this model of machine which uses a smart card and not a SD card.
Software is available though and I have already sent information on what is needed to be able to access the data that this machine gathers using the smart card. An Encore version of the software is the only thing that will work and the DT3500 Infineer smart card reader is also needed.

[Artimus60]

re: One thing you want to look at, is she only sleeping about 6 and a half hours a night? She needs to use the machine all night, and for naps. Anytime she sleeps

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She's had a hard time summoning the will to put the mask back on after she gets up to use the bathroom early in the morning. Her primary complaint is that her face is 'sore' (i.e. we've had to tighten the headgear to get a decent seal and it presses pretty hard where it comes in contact with the face). My mom has a lined face and getting a good seal has been something we've been working on since the first night she's worn a mask. I hear people saying that a properly fitting mask should 'float' on the face of the user but we haven't gotten to that point yet. We've worked with the technician at at the equipment provider and at the sleep clinic and they've given us some ideas but it still seems like we have to tighten the headgear to the point that wearing the mask is a trial.

[JohnBFisher]

Greetings Mike in Seattle! Welcome to the forum. I'm really sorry that your mother is having problems adjusting to her ASV unit. The Respironics BiPAP AutoSV Advanced is an Adaptive Servo-Ventilator (ASV) unit. That is, not only does it act as a BiPAP that will switch to inhalation pressure if she does not breathe in a timely manner (a BiPAP S/T), but it will also increase the pressure it delivers to help sustain respiration when she fails to breathe. However, it uses her breathing to help determine that process. That's the "Adaptive Servo-Ventilation" part of it. It adapts to her breathing or not breathing (that's the adaptive part). It is tied to her respiration (that's the servo part). And it helps sustain respiration by increasing the pressure (that's the ventilator part).

First, I'ld like to offer some reading for you. You might want to understand better some of the issues around Complex Sleep Apnea (what your mother has). It is a type of central sleep apnea that only arises when pressure is applied.

viewtopic.php?t=3025

Second, you might want to watch the following short YouTube article. You might be wondering "Just what is Complex Sleep Apnea?". I found the following YouTube video that does a great job of explaining Complex Sleep Apnea:

http://youtu.be/CU-XTcfg3M8

Though written by Resmed, it is not product specific. Also, though it is written as if it is for a medical practice, it uses layman's terminology, so most anyone can watch and learn.

And here's how it is recognized during a polysomnograph (PSG) [Sleep Study]:

http://youtu.be/0WpZka7wYow

Now, let me offer some suggestions about the mask and how your mother might tame it. She's right that it can make your face very sore when you have to crank down the straps to keep it from leaking during the night. I *highly* recommend you check out Pad-A-Cheek for the forehead cushion, mask liner and anti-leak strap.

Forehead pad (but you might want the mask liner, which includes a forehead pad):

http://padacheek.com/Forehead_pads.html

For the straps at the temple:

http://padacheek.com/PAC_Temple.html

For the straps across the cheeks:

http://padacheek.com/PAC_Original.html

For the straps across the back of the neck:

http://padacheek.com/PAC-Neck.html

For the silicone cushion (and integrated forehead pad):

http://padacheek.com/PAC_Maskliners.html

For the anti-leak strap (to keep the mask in place):

http://padacheek.com/PAC_AntiLeak_Strap.html

For the hose cover (because that ribbed hose can be a nuisance):

http://padacheek.com/PAC_Hosecover.html

And of course, feel free to call Karen. She's a great help .. and lots of us use her products. I don't get anything out of endorsing her products other than the pleasure of knowing you won't be disappointed by the quality or service you will receive.

I don't mean to overwhelm you, but do hope this information will help your mother as she struggles to make the therapy work. Plus, it will help you not feel as helpless as you see her struggle with the therapy.

[Artimus60]

Hi John,

Thanks a million for your reply. Pugsy alerted me to your presence and your experience with complex sleep apnea. I'm going to follow your links this morning and try to bring myself a little closer to 'up to speed' on what this stuff means. I'm a little ashamed to admit that as of yesterday I didn't know much more than 'my mom has some exotic flavor of sleep apnea that requires specialized treatment and equipment to treat'. I guess I've been lazy without knowing it. Well, no more for that approach; it hasn't been working. Besides, it gives me an unhappy feeling in my stomach to have my mom hooked up to a piece of equipment that's a complete mystery to me. Earlier this morning I read one of your recent threads discussng ASV. I think it's helped me become a little more aware of some of the concepts and terminology. I'm guessing that the links you supplied might even speed up the process a bit. I do think I'll look into the liner accessories that you referenced. I may not have the smarts to understand the machine yet but maybe I can use the time to help my mom get a better fit with her mask - it's been a bit of an ordeal. She's not a complainer but I have the feeling that it's playing a role in our situation. I tried fashoning some cloth liners out of an old cotton t-shirt and it seemed to help a little but it also increased the complexity of getting the mask on. Eventually, my mom wants to be doing most or all of the daily tasks associated with using the mask and machine so we're trying to think of comfort/robust seal while also paying mind to keeping it from getting so complex that she can't reasonably do it herself. Anyway, I'll read the material at the end of the links you've kindly provided and view the video clip.

Thanks again,

artimus60/Mike

[mayondair]

Mike, sounds like you are doing great, it's a lot to grasp all at once, your Mom has a good son . The Pad a Cheek liners attach to the mask, no fiddling necessary, easy to deal with, comfort really is important. It's hard to sleep all night with an uncomfortable mask, if this one isn't working get another to try from the DME. Taking the mask off and going back to sleep is a bad habit to get into, so work on comfort with a good seal Kathy

[Artimus60]

Pugsy, JohnBFischer,and all,

Thank you all for your thoughts and suggestions. I'm getting a handle on the terminolog and concepts behind complex sleep apnea but it I'm afraid my mom is kind of ebbing on the whole sleep apnea adventure. Between fussing with the mask, not seeing much or any improvement in symptoms (extreme exhaustion) she's having a hard time keeping up the fight. Last night she took off her mask and said that it was all too much. We've talked about it today and I think she may buck up and keep at it but I'm worried that her tolerance for keeping at this is waning. I'm going to talk to our DME today to see if he has any other thoughts for getting a fit with the current mask or trying sometihng else. She hasn't tried a nasal mask to date as she tends to breath through her mouth at night but I don't think she NEEDS to breath through her mouth - she doesn' suffer from stuffed up sinuses. If we were seeing any improvement in her symptoms but as there's none is makes the mask fight feel (to her) awfully hopeless. I've ordered a card reader and downloaded the software that I was helpfully pointed towards, so I'm hoping I can help keep her on track until we at least get a chance to see if her treatment is any more therapeutic than what the doctors have reported during our office visits. To my eyes and ears (all I have to go on at this point) she seems to be experiencing as many disruptions as ever. She stops breathing about every minute and doesn't take a breath for 20 - 30 seconds. Then she takes a big gulp or air followed by a couple normal breathes and then the whole thing repeats. She wakes up dog tired and the day goes downhill from there.

[Pugsy]

Please keep your doctor in the loop about your mom. This therapy isn't something that we use for half the night and feel good after just a few nights. It is an ongoing battle and even with the best of use and best of circumstances feeling hugely better is elusive. Perhaps there are some setting changes that could be done to allow your mom to be more comfortable with things. She may not "need" to breathe through her mouth at night but she may have developed a habit of breathing through her mouth over many years from gasping for breath at night due to the events and lack of oxygen. Happens to a lot of people and they can't break the habit no matter how hard they try. At this point though a trial with an over the nose mask might help and probably couldn't do much worse than she is doing now.

It doesn't sound like that the therapy is any more effective than what the doctor's office reports at this point. How to fix it though is going to be tough and is going to depend on what the problem is. Perhaps she could tolerate a nasal mask and at least get some better rest without fighting the mask all night. I imagine she is thinking that her sleep is so disrupted from fighting the mask that she feels just as horrible with it as without it and doesn't see any sense in wearing it. Obviously any reduction in events is better than no reduction but it is really hard to make someone understand.

[Slinky]

Are you fitting her mask when she is laying down with the ASV turned on? Our facial tissue is subject to the law of gravity too.

Are you slowly adjusting the knob for the angle of the forehead brace? After all the fitting is done are you lifting the mask from her face a short space and then sitting it back down on her face? Have you read the fitting instructions and watched the CD for fitting the Mirage Quattro full face mask?