Greetings to all

[on a quest]

Hello! I'm the spouse of an OSA husband. He's shy of being 55, overweight, short thick neck but a special, special man! Diagnosed end of Oct 09 with OSA and ordered to use a ResMed C Series Tango CPAP at 16 pressure. Three months into treatment, he had experienced the suffocation feeling, bloating, anxiety, nightmares and only about an hour a night usage. Sleep dr than ordered VPAP S end of Feb 10 set at 14/10. Up until three weeks ago time used was a guess by a sleepy guy. Thankfully from another apnea site we were able to get some information from the bipap and have been able to monitor events, usage, etc. We also got some great advice on relocating the machine, relax time with machine, understanding efficacy results and wonderful words of encouragement and understanding. During the 3 wks we have been able to monitor we have begun to understand so much more. His leakage is minimal, his AHI ranged from 1.7 to a single night of 19, most nights 5-8 AHI. AI started off for several nights at 0.0 and have gone no higher than 2.2. Apparently HI is more frequent and consistent. Usage time has gone from an hour or less for 6 months to varying hours, 3, 4,5 and a couple 6 hr nights.

The mask comes off and he has no particular reason for it. Sometimes anxiety, sometimes chest pressure or swelling feeling, sometimes he just seems to seek an awake reason for it but really doesn't know for sure. If I am awake and prompt to mask -up he says he will and than nothing happens. He noticed the difference in how he felt with increased or decreased time. He has a positive attitude toward healthy benefits, has been open to try suggestions but is feeling frustrated that gains are not consistent. Not much support from DME provider nor sleep dr.....kinda just plugging away with site suggestions and doing it together. However, we really would like to hit the magic button that helps us to understand how to keep that mask on! If the leak alarm could be set to on, would it arouse enough when the mask came off to assist in knowing it had to go back on? Is the taking of the mask off like an inner denial or fear or is there actually something physically going on that he reacts to? Any help with this new path would be so very, very much needed and appreciated.

[Julie]

Hi, can you fill in your member page Profile with the full name of the machine, same for the mask and add pressure settings if possible? That way everyone can see the equipment whenever you post and will have something to go by to help.

[roster]

Those are high pressure settings. What position does the sleep in? Has he been evaluated for positionally-affected sleep apnea (PSA)?

With PSA the apnea is worse on your back than on your sides and tummy. Also the pressure requirements may be much higher on the back. ResMed says 40% of patients have PSA.

[echo]

Greetings and welcome to the forum!

To answer your last question, most often the reason for mask removal is because the person has not yet quite adjusted to the therapy yet. That could be due to physical reasons (uncomfortable mask, incorrect pressure) but it can also be purely psychology that they don't accept the benefits of the therapy (and therefore don't want to "work at it" to improve their setup). Given your husband's unstable results, as you put it, no wonder he doesn't want to mask up at night. Many many people throw off the mask unconsciously at night but in time that goes away as they get used to sleeping with the CPAP. After such a long time, perhaps the 'physical reasons' for ditching the mask have eventually turned into 'inner denial' due to the continuous frustration.

Please do post your specific equipment. Do you monitor via the software or the lcd screen? Average reported leaks may be OK but there might still be a lot of fluctuation during the night, and you need the software to see that. He might be mouth-breathing, what mask is he using? Do you have good hose management, to avoid pulling on the hose while tossing/turning in bed? There are still so many possibilities for improving the therapy, don't give up!!

[on a quest]

Thanks so much for your responses! Let's see, inner denial due to frustration.....how to deal with that? He has no problem on the outter personality on using the machine, discusses sleep, sleep info, sleep sites, willingly seems to try the experiments: location, mask adjustment, white noise, etc. Any suggestions? We are anxiously awaiting his records so we have no particular information on its contents other than the brief run-down following the sleep study. Very brief....5.8 hours "asleep" in an 8.8 hour study, 182 total events, 31 per hour and you're on your own to figure the rest of it out! Haha, but not so funny in reality.He did say he spent the entire night on his back and although he has slept for years in all positions, he is currently trying to learn to stay on his back only. He has a great awareness of the risk for no treatment and top that off with family medical history, he wants to avoid any of those risks. He's seemed eager to get the mask on, has said he has found a beautiful spot at times and about 50% of nights used, he will go back and put it on again. Any ideas would be wonderful...thanks again!

[echo]

ok I stand corrected, maybe he ISN'T having any inner denial

Can you please go to your profile (User control panel -> Profile -> Edit eqiupment) and post hubby's machine, mask, humidifer, software, etc.

Then please post current settings, and any graphs or additional data you have on current AHI, leaks, etc.

Most likely the mask-removal is due to discomfort from incorrect settings, mouth breathing, leaks, or a combination, or something else entirely. The only way we can help you troubleshoot that is with more info from your side.

I wouldn't worry about trying to brainwash him yet, he sounds pretty motivated

[bailachel]

Welcome to the forum. You will find lots of helpful people here.

Why is he trying to learn to sleep on his back? That is generally the worst position for those of us with apnea. The airways are most likely to collapse in that position.

[on a quest]

Sorry but I did not know other than ResMed VPAP S and a ResMed H4i Heathed Humidifier, which item to choose from the list. Duh... I don't know from the list what to choose so if you can direct me, I will be happy to update that information.

From the LCD screens, available only about two weeks the leak rate has been like this:1.04, 1.10, 0.34,0.58, 0.22, 1.26,0.30, 0.12,0.62, 0.26, 1.06, 0.100.26, 0.58 (using large mask) and last night with medium mask and sore nose bridge this am 0.04.

AHI/AI for the same period as above: 3.3/0.0 1.7/0.0 5.7/0.0 6.4/2.2 8.9/2.0 4.8//0.0 3.4/0.0 5.6/0.3 5.8/0.0 8.51.1 19.4/9.0 10.6/0.6 4.1/0.0 7.1/1.3 11.5/0.6

Current order (yesterday) to raise bipap from 14/10 to 15/11 is to see if it will reduce hypopneas.


Why his back? We've discussed this not being a good position but he says it is the most comfortable and less mask disturbance. I am ordering him that special cpap pillow that allows for good hose/mask position while on his side. When he dons the mask and comes to bed (from his new couch location), rarely is he ever on his back and never does his machine follow.

[on a quest]

ResMed VPAP S ResMed H4i Heated Humidifer Mirage Quattro mask ResMed ResScan Data Card Any suggestions as to which software I would purchase for this set-up?

[on a quest]

Oh what a night! Machine used 1 hr 28 min. Sleeping in living room, came to bed and instant snore (no machine). The usual hand on back stopped it for a few minutes and than the night was on with loud hard snoring, leg thrashing and from what he said this am, dreaming he was being suffocated. Came back to try machine about 2am but dream continued. Any suggestions on when to wake-wake him up from the snoring or the dreams? I just don't know at what point he is if he'll break out of whatever cycle he's in and if waking him up will bring anything on stronger. A good thing to wake him up or let him be? He feels horrible today, both because of his night and because I moved to another bedroom. Help!

[roster]

From reading this forum for some years now, it seems most people that are successful with CPAP make a firm commitment to it, educate themselves, and then take charge of their own therapy. (DoriC and Mike may be somewhat an exception).

I am not so sure you can do it for him by proxy.

You can lead a horse to water but you can't make him drink. Especially if the horse is sleep and oxygen deprived.

Is his motivation to the point it needs to be? It can be very difficult to get motivated if he is totally exhausted and sleep deprived.

[on a quest]

Okay, so you hit a truth that made me cry....I can't do it for him. I have really tried to not let the whole sleep, machine, risks get to me. Just tried to remember how hard he has been behind me with my medical situations, and I so want to make it better for him, in any way I can. But, you're right, no matter what I do, learn, follow-up on, adjust to, overlook, look he other way, I can't make that commitment for him. He says he's wanting it, that it's good when it happens and he tries everything I come across but today I think in the flood of my heart tears, it really may be more to make me happy than to commit. Not a bad thing to care about me, if that's what it is, but absolutely not a good thing if it is enabling him to be less successful than he can be.

So, now that the tears have stopped and the stand has been taken, I have decided that our nightly therapy conversations probably need to reduce so it is not always the main line of conversation. I also think that in order for him to take more responsibilities I just need to back-off and hope he takes the reigns more. I need to still be involved but maybe I've been more up front in the therapy and need to fade a bit to black. To be honest, this whole situation has consumed me, with fear of loosing him by risks associated with SA, worry about work or other accidents, frustration in lack of medical support, uncertainty of how to improve therapy, knowing so little about this condition (read, read, read with a lot of reading still to go!), and most likely my over-eagerness to solve this problem. It's an emotional issue for both of us and a grieving time for "how he used to be". It's our challenge to face together but the structure needs to be realigned.

Any feedback? Roster, thanks for making me cry and thanks for smacking me with a truth. I hope my attitude is a forward moving one, that maybe I have crossed a threshold of denial and that I can support him in a positive less intrusive way. I hope he runs with it all and takes that flight at the edge of the cliff to find he can fly and feel the freedom!

[DoriC]

While it's true that I had to take charge of Mike's therapy due to his disabilities, I made it my mission to educate myself about OSA and how to treat it and learn I did here. I read everything and asked questions(again and again) until I felt secure enough to start tweaking myself. It was difficult not using the equipment myself and the lack of feedback, but I couldn't have done this if Mike didn't commit himself to doing his part to make it work. He trained himself not to sleep on his back, to breathe through his nose, make his own mask and hose adjustments, use new bed pillows, practice good nightly hygiene, but most of all it was his positive attitude and trust that got us through. He celebrated every small victory and kept the set backs in perspective(more than I). It was a true partnership because we both understood the real consequences if we failed. This forum is part of that partnership. Thank you.

[DoriC]

I just read your last post. Yes, it was "all-consuming" for me too until the point where my health was deteriorating from anxiety and lack of sleep. When the Dr(and a few 2x4s from my friends here) finally convinced me that he wouldn't die in his sleep if he moved to the guest room for awhile and I closed my door and went to sleep, I began to recover slowly and discovered that he wasn't so helpless after all. It took about 6 months but now we're back to being cozy again. It took time and patience to enter this new world but now it's become second nature. Hang in there and know you're not alone, we're here to help in every way we can.

[on a quest]

Thanks for your words, DoriC! It doesn't feel as much alone in this journey with the postings and words of encouragement. I also know he won't die in his sleep with or without me being in control of it all.....it's the roll of the dice everyday with any possibility, not just OSA. I guess I just felt it was my job to do whatever it took, but funny, that I didn't see that really what it takes is him, 100% in all ways. I knew he had to do it and I kept seeing him in control and committed but in hind-sight, not so and partially because I may enable him (all from the heart). Made me laugh out-loud at the concept that at one time in 35 years I was pretty sure he couldn't do the laundry or cook a meal or take care of bills either....low and behold, he is capable of those and much more. It's just time to be a better partner with letting him take real ownership and being there as a partner instead of the pilot. I am happy that you all worked things out and it is all good and you are in that cozy place again. God Bless You!