Trying to reset cpap back to autopap...may need instructions

[jdm2857]

Has your husband tried a nasal prong mask like the Nasal Aire II? They're not very popular,
but one just might solve his nasal issues.

Unlike nasal pillow masks where the pillow seals at the bottom of the nose and the flimsy tip
protrudes into the nose just a bit, the Nasal Aire II prong is straight sided and creates a seal
inside the nostril. The prong walls are much thicker than a nasal pillow, and protrude about
3/4" inside the nose. The Nasal Aire II can be used with or without headgear.

I'm thinking that the prong will stop the nasal valve collapse.

I recently received a Nasal Aire II from another forum member. And while I have tried it on,
I have not attempted to sleep with it yet because I am trying to resolve problems with my
new Mirage FX and do not want to bring a third mask into the mix just yet. (I am alternating
between the Mirage FX and my usual Swift FX.) It seems like the prongs might take a bit
of getting used to, but that might be a small price to pay if it helps with your husband's
problems.

[newsnore]

I totally understand what your husband and you are going through. He wants sleep - not struggle with that horrible conglomeration on his face and up his nose. Exactly how I felt to begin with – The whole CPAP thing is bound up in the saying - “It gets worse before it gets better” – for some of us anyway. I had to really fight the urge to rip the mask off when trying to go to sleep for the first few nights of use. With untreated OSA, sleep is not the problem (good therapeutic sleep is a problem) – it is actually the best part of the day (climbing into bed and dropping off before the head hits the pillow) because your whole system is crying out for it – we long for sleep well before it’s time to go to bed. So when CPAP comes along it quickly establishes itself as a hinderance to getting the sleep our whole body is crying out for – well that is how it seems on face value. However if hubby can persevere he will start to feel the benefits of good sleep and then that is often the turning point where we begin to love CPAP because we are getting our lives back again and all these things like lack of libido and depression/don’t care about anything all come right again.
Things that might help hubby persevere are – getting him to read some of the experiences (particularly the positive ones) of those on this forum – there is nothing like the inspiration we get from fellow feeling. It is hard to take advice and encouragement from sleep professionals who have never travelled the same road.
Another thing that might help is for hubby to wear the mask, hooked up to CPAP if possible, before going to bed and get used to the feeling of the foreign body attached to his face while his mind is occupied with other things.
Little things like this could help along with all the other advice that members are giving too.

[Seekinganswers]

Sounds like he is physically and mentally exhausted from this journey, and it's good he has you to advocate for him at this time by gathering and sorting through information to glean some relevant tidbits. He's probably too depleted to take this on. Do you have copies of his sleep studies? If not, can you get them? Maybe some bare facts, like how low his oxygen drops, would motivate him to keep trying with the CPAP. Since his stuffiness was existing before and after CPAP, for the sake of a more immediate resolution, maybe leave sorting that out till after he feels better. Plenty of people sleep with full face masks because they mouth breathe and either don't want avoidable surgery or a surgical solution isn't likely. Getting a full face mask could happen in a matter of days, then you and he could start doing any adjustments that might be needed to optimize its comfort and effectiveness. Sounds like he has other health issues that will need continued follow-up, but if his body isn't getting the oxygen it needs for health and healing, he's fighting an uphill battle. If he can focus on conquering (or in this case, yielding to) getting therapeutic CPAP treatment, I would dare to say he'll then have more strength for the other battles. A stuffy nose does not mean someone can't use CPAP, and right now using that CPAP is his best option - it's quick, no surgical risk, no recovery pain, and isn't something that changes your anatomy forever whether for good or bad or how little benefit.

As far as other surgeries go, were they advising him to get his tonsils out for years and his tongue operated before he had the nasal surgeries? They darn well better have if there's any credibility at all to them saying there's a need. If this is an afterthought since he's still having congestion, I'd run far and fast from these procedures. I doubt tonsils often suddenly become a problem needing surgical intervention. It's usually a long standing problem with infections etc. To be perfectly honest, these surgeries are difficult for even a reasonably healthy person - which your husband does not seem to be. And I've read studies that indicate that post surgical healing in general is slower for those who have untreated sleep apnea. If the surgeries do not resolve his sleep apnea, that leaves him back at needing CPAP. We've had plenty of people on here using CPAP after these surgeries. Of course, if the surgery corrected someone's sleep apnea, they wouldn't likely be hanging around here on a CPAP forum, so don't be surprised if you don't get many replies singing the praises of surgical solutions.

Sounds like he's not obstinate, just utterly exhausted. Hang in there and take good care of yourself while you're trying to take good care of him.

P.S. After I posted I read that you say he did use a full face mask. Why does he HAVE to breathe through his nose when the mask covers his mouth and it is acceptable to mouth breathe in a full face mask? When he is sleeping without CPAP is he breathing through his nose or his mouth when he sleeps? Just trying to get a clearer picture.

Actually, the reason they are now suggesting the tonsil/adnoid/soft palate/tongue surgery (which by the way is a brand new procedure,..surgeon pioneered the procedure..him and a few other colleagues. He has only done 35 of them and he says "most" were successful. My husbands airway is very small..he has a large throat (but is 6' tall and only weighs 200 lbs so he isn't obese) and his tongue falls back and blocks his airway when he falls to sleep on his back or side. This is why the ENT says if he opens up his airway by doing that procedure, he will likely be able to sleep with his airway opened up. If not, there is an additional procedure (AirVance) where he can put a permanent suture up under his jaw and loop through the base of his tongue and pull it forward and screw to his chin somehow..not sure my wording is accurate lol. Anyway, he said that would cure it for sure but he can't just do that last procedure first because if his airway was still too small, he would then have to take the tonsils etc out and could not then redo that last procedure. That's why he has to do the other first. Make sense? You can watch the video on youtube of this procedure. Search for "Robotic Sleep Apnea Surgery at murfreesboro clinic. Let me know what you think if you watch it. Made cringe. What with all the MRSA going around at all the hospitals? I think it would be a death sentence. Hubby is cleaning out his cpap hose as I type! I have been staying awake to get him to turn over to his side or stomach face down as soon as he goes to sleep and starts the apneas, then I sleep for a while until he turns over on his back and starts again..and so it goes all night. So he is getting "some" sleep and I'm sure that is what is sustaining him.
He is trying to breathe through his nose when using the cpap and generally didn't remember taking it off...he just takes it off in his sleep because he says he is smothering.

Yes, I have copies of his sleep study.pre cpap AHI is 14.5 hour, supine AHI 56.1 hr-----then 12 days later the PAP Titration study was AHI 16.5 supine AHI 20.3 Not sure what all the numbers mean but I have both studies. One is a fax copy of their scanned copy and very hard to read. Thank you for your concern and help!

[Seekinganswers]

I will have to agree with the others who have suggested getting a second opinion and leave the surgery as a last resort. I would encourage you to try to make CPAP work. There are some very expert people here who can help. Did your CPAP machine have a heated hose and humidifier? That can help with nasal issues; I have some first hand experience with that.

Concerning the issues with libido, it is difficult for me to admit this in a public forum, but we went through all that as well. Education and a strong relationship has helped us get through that. But know this, it is normal with OSA to have these side effects and it will get better with treatment.

I wish you and your husband well. The more experienced members will be along shortly, to give you some very good ideas on how to proceed.

Thank you for your reply. That does give me hope that he will one day return to the husband i've had for 20 years.

[Seekinganswers]

I have had surgery for deviated septum and turbinectomy. It is only temporary. If it were me....I would see an allergist.

If these people at cpaptalk can't fix it, it can't be fixed! I Hope that somebody can come up with the solution for your husband, there is amazing amount of knowledge here, and it is not swayed by the almighty dollar!

Debi

I agree Debi, I'm getting all kinds of good advise. His nose surgery lasted 2 months! Now it is pretty much right back like it was originally. He has seen an allergist and took allergy shots for dust mites. The type of work he does puts him in dusty homes sometimes which will make him have an allergy attack that will last weeks. It's so frustrating. He may have to take shots again for it.

[Seekinganswers]

With everything your hubby and you are going through has he considered seeing somebody for some talk therapy? Sometimes a professional can ask questions or make suggestions that while they may not directly help his problems, they might help with the frustration and possible despair he must be feeling.
I don't understand his lack of desire, though. I'm on HRT, and while the past 2 weeks have been bad for PAP (head cold, claustrophobia issues) I've got the desire of a 19-y-o, just too tired to do much about it...

That's some really radical surgery being proposed, and I would get other opinions before proceeding. If he truly has big tonsils, I could see removing those, but the rest of the modifications sound rather drastic.

Keep us up to date, please, and welcome.

Thanks for the welcome. Yes, he was like a 19 yr old a year ago, but as he has lost more and more quality sleep, it has been been going downhill over the last year until it's now just totally GONE! I have read that the part of the body that controls that is the same part that is your "fight or flight" mechanism. It is explained that when your being chased by a tiger, the last thing you want to do is have sex!

[Seekinganswers]

You might look into reflexology and acupressure. Learning how to move the energy to the right spot could be a kick!

More quackery. If these things worked, they'd be part of real medicine and you'd be being overcharged for them by the real doctors.

Just go see a witch doctor. They may convince you that you're feeling better, too.

We have used reflexology a good bit for his shoulder and neck pain and it worked when nothing else would. I love my reflexologist.

[zoocrewphoto]

Does he like he can't breathe through his mouth? I understand not breathing through his nose as I can't when lying down. That is why I use a full face mask. I don't use my nose at all at night.

I would also check if he using the ramp at the beginning and what it starts at. Many people they can't breath if it starts too low.

[Seekinganswers]

I totally understand what your husband and you are going through. He wants sleep - not struggle with that horrible conglomeration on his face and up his nose. Exactly how I felt to begin with – The whole CPAP thing is bound up in the saying - “It gets worse before it gets better” – for some of us anyway. I had to really fight the urge to rip the mask off when trying to go to sleep for the first few nights of use. With untreated OSA, sleep is not the problem (good therapeutic sleep is a problem) – it is actually the best part of the day (climbing into bed and dropping off before the head hits the pillow) because your whole system is crying out for it – we long for sleep well before it’s time to go to bed. So when CPAP comes along it quickly establishes itself as a hinderance to getting the sleep our whole body is crying out for – well that is how it seems on face value. However if hubby can persevere he will start to feel the benefits of good sleep and then that is often the turning point where we begin to love CPAP because we are getting our lives back again and all these things like lack of libido and depression/don’t care about anything all come right again.
Things that might help hubby persevere are – getting him to read some of the experiences (particularly the positive ones) of those on this forum – there is nothing like the inspiration we get from fellow feeling. It is hard to take advice and encouragement from sleep professionals who have never travelled the same road.
Another thing that might help is for hubby to wear the mask, hooked up to CPAP if possible, before going to bed and get used to the feeling of the foreign body attached to his face while his mind is occupied with other things.
Little things like this could help along with all the other advice that members are giving too.

Thank you for the encouraging message. I do have hope! He doesn't mind the cpap or the mask. He wore it prior to his nose surgery for 2-3 hrs every night, but would wake up with it on his forehead or off in the floor and didn't even remember taking it off. When he figured it was because he couldn't breathe well through his nose, he went to an ENT who said he needed the septoplasty and turbinate reduction surgery to correct that so that he could use the cpap with success. Surgery was good and lasted about 2 months. He was switched after surgery to a bipap machine. After he healed up from the surgery enough that he could stand the pressure of the mask, he began using it and was wearing it 6-7 hrs per night. This went on for about 2 months and he told for the first time in about 3 years, that he was actually feeling pretty good. He was gaining energy, mood was good, everything was good...then we turned on the heat for the winter and his nose stopped up and hasn't been that way since. ENT says it's nasal collapse. He has cleaned out his hose and mask to try it tonight. He pretty much has refused to try it for the last 2 months because he is so stuffy he smothers and is so wore out with trying to get well, he just hasn't the energy to care anymore. We'll see how tonight goes. I may sit up and wait for him to yank it off and intercede!

[SleepingUgly]

Yes, he has only dust mite allergies...

I would aggressively pursue the Flonase, yes, even with you handing it to him and saying, "Spray!" If that doesn't work, he should return to the allergist. The allergist can put him on a spray steroid (e.g., Flonase, Nasonex--for me Nasonex is better) and a spray antihistamine (e.g, Astepro) and I hear there's a new one out that's a combination of steroid and antihistamine.

He has tried the breathe rite strips...they aren't quite strong enough to hold his nose open.

The Breathe Right Advance are pretty strong. They practically ripped my skin off. It can't hurt to add it in.

Looking at the report, his machine is currently set to 4.0 as the minimum pressure and 12,0 as max,

What is his prescribed pressure? That is, in the titration, what pressure alleviated his events? I am betting the reason he feels he can't breathe is because 4.0 is too low. Lots of people feel like they are suffocating on 4 cm. You have a data capable machine? I have to go back and read which machine he has. There is almost no reason whatsoever for anyone to be running a minimum pressure of 4cm. It's not therapeutic and unless the person's titrated pressure is 6 or something crazy low like that, it's too low to be able to rapidly climb to the right pressure when needed. Leave aside the feeling of suffocation that many people experience.

His AHI looks like 14.3/hr (copy is a faxed copy that is nearly illegible supine AHI looks like 56.3.

So staying off his back would help...

tonsils are very large doc says never shrank like most adults do.

So it might help lower his CPAP pressure if he has them removed. If he won the lottery, maybe it would get him off CPAP entirely (but the odds may be about the same as winning the lottery...maybe higher if the tonsils nearly touch). But removing his tonsils, his uvula, his entire tongue, and his left foot -- none of these things will impact his nose.

surgery was septoplasty w/ turbinate reduction

Makes sense.

Basically he is not looking for a surgical intervention to get him off the bi-pap or cpap, he wants to use it but can't because his nose is so stopped up he can't breathe using it.

What about the humidity? Have you experimented with more/less humidity? Sometimes too much humidity can make a person's nose feel stopped up. At the same time, too dry can feel stopped up too.

I have gotten home tonight and told him what several have said on here that he should still be able to use the full face mask and mouth breathe and he said and I quote "I CAN NOT USE THE MACHINE WHEN MY NOSE IS STOPPED UP"

If he's a nasal breather, it may be true that it's hard for him to mouth breathe. Let's work on his schnoz and his pressures.

He will hate me by the time he gets better but I'm not letting up!

You go, Girl! A woman after my own heart.

[Julie]

Please let him try a couple of nights on lower humidity - too much can be very congestive for many people (like myself) who otherwise have no other nasal issues and never use sprays.

[SleepingUgly]

He is trying to breathe through his nose when using the cpap and generally didn't remember taking it off...he just takes it off in his sleep because he says he is smothering.

Yes, I have copies of his sleep study.pre cpap AHI is 14.5 hour, supine AHI 56.1 hr-----then 12 days later the PAP Titration study was AHI 16.5 supine AHI 20.3 Not sure what all the numbers mean but I have both studies. One is a fax copy of their scanned copy and very hard to read. Thank you for your concern and help!

The titration should say what pressure he needs.

[Seekinganswers]

Does he like he can't breathe through his mouth? I understand not breathing through his nose as I can't when lying down. That is why I use a full face mask. I don't use my nose at all at night.

I would also check if he using the ramp at the beginning and what it starts at. Many people they can't breath if it starts too low.

Well, he originally used a cpap that started low and ramped...His new one is a bipap machine that blows at 4 unless he stops breathing, then it ramps up to 12 to push through the episode without him waking up. So, that very well could be the issue. He is going to attempt it tonight for the first time in a couple months. We'll see how it goes.

[SleepingUgly]

If he's on bilevel, there is an IPAP (inhale pressure) and EPAP (exhale pressure). It wouldn't just be 4-12. That sounds like an Auto-PAP pressure. Which machine does he have?

There are methods to deal with removing masks when you sleep, such as taping an edge to your face, so that you feel it when you start to remove it; however, I wonder if the legitimate issue is that he's really not getting enough air if his pressure is 4cm.

Well, he originally used a cpap that started low and ramped...His new one is a bipap machine that blows at 4 unless he stops breathing, then it ramps up to 12 to push through the episode without him waking up. So, that very well could be the issue. He is going to attempt it tonight for the first time in a couple months. We'll see how it goes.

4-12 is not a bipap kind of setting. I'm confused.

[RandyJ]

4cm is probably too low, he may need 6cm or more as a minimum pressure to feel like he is getting enough air.