yo-yoing sleep patterns on bipap

[on a quest]

A pm suggestion came to post to the forum what is going on here lately. Bipap at 14/10, HI weekly reading 2.0, monthly reading 3.7, AI weekly/monthly reading 0.0. Leak rate 0.10 on the average. After several months of no usage time recorded, my husband made it to 6-7 hrs a night. Good deal for about two weeks and than the last couple weeks its 1 1/2 hrs to 3 1/2 hrs a night. What happened? Over the weekend he made it all night without taking the mask off. Last night 5 1/2 hrs. What makes the time used so darn unpredictable? He seems excited to get mask on, looks forward to that "heavenly" time as it all starts, feels the benefits of the good nights the next day and than boom....it all falls apart. Dumbfounds me!

It's been about nine months since sleep study, five months on VPAP S, 14/10, H4i humidifer. (previous cpap 16/12-untolerated) He is currently in front bedroom without me, plan is to move him to our room this weekend and I'll take front bedroom to get him used to our room again and than hopefully together in the same room.

I know he reads machine in am as it's still "on" but he says he doesn't know how much time he used it. Don't have experience with not communicating but apparently his time is not a topic and the "secret" reading makes me very sad. I haven't addressed it as there seems no point in adding tension over something that really has no goal.

Some nights he is very aggitated while wearing the mask and sleep talks, with no memory of it having happened. Some nights he knows in the am it was a long tossing and turning night with no sleep. Why-ever the mask comes off is unknown. Tried a couple weeks with me getting up and getting him to put the mask on but now it is what it is for time as I was not getting sleep.

Please post any suggestions you may have as it would be wonderful to get on track and stay there. Thanks in advance from the wife.

[jweeks]

Hi,

There are lots of issues here.

First, does your hubby have a "data capable" machine where he can read the leak rate and AHI number each day? If not, he should check with his DME or doctor to see if he can get one. Without numbers, it is really hard to tell what is going on.

Second, the issue with tossing and turning. That needs to be sorted out. It could be that his machine is set wrong, and he is not getting effective therapy. A cpap is like a light switch--either it works great, or not at all. It isn't like you can get 1/4 or 3/4 of your treatment at a lower pressure level. If it isn't right, you get nothing at all from it. If it isn't right, he could be sleeping poorly, causing the tossing & turning. Other possibilities is that he has a 2nd sleep disorder, such as periodic limb movements (PLM). Or he might be uncomfortable. It might be time to get a new bed, or adjust the air conditioner for a better temperature.

Third, where is the tension coming from? Foul mood is a classic symptom of a sleep disorder. That might be connected with not getting effective therapy from the machine. Or is this a pride issue? Maybe he feels less of a man or somehow damaged by having to use a medical device. Or is he feeling pressure from you? Or from the job? I think this needs to be sorted out.

Forth, is the mask comfortable? My first mask was a torture device. Several that followed were even worse. I thought I was going to fail until I found the one perfect mask that works for me. It is the Swift LT. Perhaps your hubby needs to try a few more masks until he finds one that he can live with.

Finally, is he game for trying an experiment? It turns out that many new CPAP users take off their mask without even knowing that they do it. This reflex diminishes over time. Some people have found that by adding some resistance to taking it off, they learn to keep it on. One trick is to use some surgical tape to tape the straps to his face. Give that a try, and see if it helps. Think of it as training wheels for the mask.

-john-

[roster]

There are some good signs that he will eventually adapt to CPAP.

-His numbers when using CPAP appear to be good.
-He made it all night over the recent weekend.
-He "looks forward to that heavenly time" and feels the benefits the next day - he understands how good CPAP is for him.

I think it is good that the two of you are experimenting with bed arrangements.

I believe in action and not sitting around waiting for things to get better. However, I have to admit that sometimes it just takes time to adapt to CPAP. Hopefully, he will adapt quickly from here.

Ciao and good luck,

[roster]

Bump.

[on a quest]

Yes his machine is data capable. I hope things pick up...it has been a long road.

[DoriC]

I don't know his machine so I can't be of any help with that, but I'm hoping some of the experts will have some suggestions. I can totally sympathize with your situation. In our conversations I've related to you a bit of my history but of course the dynamics in every relationship are different. I had to make a complete change from enabling his "poor me" routine and started playing "hard ball" with a little drama thrown in for good measure. It wasn't easy and took awhile but in the end I had to convince him that he was still the "man of the house" and the improvements he was experiencing were all because of him and his determination to succeed. Then he finally was able to accept that we were a team and I was just the coach and it was OK if I knew more about this stuff than he did. I hope he'll open up to you and tell you what problems he's having and accept your loving help.

[torontoCPAPguy]

Sleep is not just the responsibility of the blower! Remember that. The user needs to take ownership of the sleep issues as well and needs to modify sleep habits. Total silence. Total darkness. Don't eat after dinner (the stomache and bowls growling are going to wake up a light sleep). Keep water consumption down after dinner and visit the washroom before going to bed. Cool the room and use a comforter if need be. If you have pets, make sure they are elsewhere in the house. Nothing like the dog having a bit of a shake due to an itchy ear at 2 a.m. to blow your whole sleep pattern for the night. Got kids? Get a shotgun and stand it beside the bed... then tell them that anything that moves after you go to sleep ... well, it's shoot first and ask questions later. Stop them from 2 a.m. visits to the kitchen for bedtime snacks after studying late. AND stop them from heading to the washroom at 2 a.m. if your bedroom door is not closed and totally quiet-making. Dress comfy for bed. Get the right pillow to be comfy with your mask. Get the right mask. Got racoons or squirrels around the house? Time to blast them into the next world cuz THAT will also disturb your sleep pattern, as will some idiot burning rubber down your street at 2 a.m. Make sure any stress from the day has been dealt with so that you are not thinking about it while going to sleep. No gassy foods or hard to digest foods any more. The sleep pattern will be messed up by that as well. In fact, if you are going to consume barley soup, wieners and beans, etc., for dinner BOTH of your sleep patterns are likely to be messed up unless you sleep under the glideslope of an international airport. You get the picture at this point. Don't base your entire good night of sleep on that blower. It is not the blower's responsibility to ensure a good night of sleep - it is just a crutch along the way. YOU have to want that good night of sleep and YOU have to work for it - the older we get the more difficult it becomes until we reach that age where everything takes an about-face and we have no trouble sleeping half the day. Then it's time to get two or three CPAPs and make sure you have one by the couch as well so that OSA doesn't kill you while you nap watching the 2pm golf tournament on TV. Pity. Life seems to get more complicated just as we reach the age where it should be getting simpler.

For crying out loud, stay away from hard to digest dinners and gassy foods; empty your bladder before hitting the sack and make sure that your mattress and bedding is comfy as hell. THAT is a good start to allowing your CPAP machine to do ITS job. Before then, you are just blowing bubbles. Probably from both ends.

[on a quest]

A bit of reassurance and a whole lotta humor in your responses...I needed both! Thanks! Sleep is tiring!

I have backed off on discussing how many hours or whatever with the machine. I don't say anything about whatever I noticed in the readings, like his leak rate is up compared to what it has routinely been. Could be real leak or could be just letting the mask lay after taking it off. I just ask how he's feeling or how he slept and regardless of the readings he just says pretty good or okay. The night before was a topic each evening and so my not discussing it is two-fold.....one is to not create any stress about success or failure before going to bed and the other is to let him break the ice with his feelings, thoughts and maybe get a grip on things. He just SEEMS so okay with things as they are and I am getting STRESSED trying to solve it all, which I know I cannot do. Like everyone has said over and over, he has to take ownership. Real hard waiting and wondering if that will ever happen. I'm not getting up during the night to prompt for the mask to go on although I routinely wake to do so.

I did notice this weekend since I get up earlier than him that the mask will be off like 4:45 and than on at 5:00 until he gets up, which makes for usage increases. I wonder if he hears me and on it goes. He did within a five hour

No kids, no raccoons, no racing cars. Pretty darn good sleep environment if you ask me! Early and healthy dinners. No real noises outside his own mumbling on nights. In my over-eagerness of post readings, I think I've done a good job giving him the ultimate room to sleep. Only thing lacking is me! We planned for him to try this weekend back in our bedroom but that didn't happen. I just want to get it down he said. Deflate my balloon!