Victim of centrals only?

[Pugsy]

I will admit that other than the nocturia and morning headaches going away pretty much immediately from day one ...I never really felt any great improvements in my energy levels, etc.
I pretty much accepted it as "this is as good as it gets" kind of thing. Happy that my O2 levels weren't going in the toilet and the 4 to 5 pee breaks in the night and the morning killer headaches were gone.

Then a couple of years into therapy I had to go without my cpap one night because I traveled to Vegas and totally forgot the long hose and nothing could be done about it until the next morning.
I got a taste of what untreated sleep apnea could make me feel like....it wasn't pretty.
I got a rude awakening as to just how bad I could feel and I realized that things had improved a lot more than I thought.
The improvements were so very slow and gradual that I just didn't notice them...but I sure noticed the return of some really ugly stuff that one night without cpap.
My sleep quality was crap...lots of wake ups...more peeing...and woke with nasty headache and just felt like total crap all day.
Had to drive clear across Vegas to find the one and only medical supply store open on a Sat on a holiday weekend...and spent $30 for really cheap generic $5 hose anywhere else...and it was the best $30 I ever spent.

At some time in the future you may be in a similar situation where you have to sleep without xpap....there's a good chance that you will get a similar rude awakening as to just how bad things could be and realize more improvements than you might think.

[bonum.noctem]

Then a couple of years into therapy I had to go without my cpap one night because I traveled to Vegas and totally forgot the long hose and nothing could be done about it until the next morning. I got a taste of what untreated sleep apnea could make me feel like....it wasn't pretty.

That makes me wonder:

Does your body adapt to xPAP in a way that makes sleeping without xPAP machine more cumbersome than it was before starting the therapy?

So almost like withdrawal symptoms?

Can it get dangerous when you try to sleep without machine after your body has accustomed to ASV therapy in a way that the breathing or wakeup impulse does not come or comes delayed when an event occurs, because that's what the machine did for you all that time?

[Julie]

You're blaming a machine for physical realities - your orig. OSA worsened over time but you didn't realize to what extent until diagnosis... forgot (if you ever knew) what good sleep should be. And you got older, inevitable and with whatever usually comes with some ageing however young you might be at the time - the decline is gradual just as being used to lousy sleep was pre diagnosis, so again you never appreciated the real changes that took place - in you, not the machine. The only way you 'ada;t' to Cpap is by your body responding to being better off on it, but not by the machine's having some nefarious effect... and I don't see how not using the eqiupment could be more cumbersome than using it!

What's dangerous at any stage of use is not using it for the reasons you were told to use it originally... you have apnea, the machine doesn't know or care how much or what stage you're in or anything else... it's a machine and you set the parameters. But - after being on it a long time and then off all at once, you feel the lack of it all at once because you are not declining gradually as you did pre diagnosis, nor are you experiencing the immediate relief you did when you first started on it... in a way you've been spoiled by the machine... so don't look to blame it when things don't go well and you don't use it, be glad you do have it all.

[Pugsy]

An often asked question....do we get "dependent" on these machines.
I don't think so. Might be different if we were on them 24/7 for months and years and our respiratory systems were seriously compromised from some other health issue.

Remember...we breathe normally quite well when not asleep without the machine so most often we use the machine 1/3 of our day at best.
And with the exception of the few times during the night where your machine gives you a little puff of extra air to help you when you have a central apnea....any air exchange is brought on by your normal respiration. The machine doesn't force you to do anything except with the little extra puff that apparently for you doesn't ever get over 14 cm (your pressure graph doesn't show higher than 14 and it would if you went higher). All the machine is actually doing is just holding the airway open for you so that when you breathe in and out the air can move. You are doing the work.

When I had my rude awakening....was simply the return of the same old ugly symptoms I had prior to ever starting cpap.
I didn't have any new symptoms and I was back to normal the first day after using the most expensive cheap generic hose I have ever seen.

[bonum.noctem]

You're blaming a machine for physical realities... so don't look to blame it when things don't go well and you don't use it, be glad you do have it all.

I think you misunderstood, I wasn't blaming the machine and I wasn't thinking about not using it, this was just a thought for when for example I use it every day of the year and then go on a long distance flight where I have to sleep in the plane in an usual position without machine. Or as @Pugsy mentioned, to go on a travel and meet obstacles at the destination that prevent you from using your machine (like a room without any power sockets or power socket too far away from the bed and no extension cable).

[palerider]

You're blaming a machine for physical realities... so don't look to blame it when things don't go well and you don't use it, be glad you do have it all.

I think you misunderstood, I wasn't blaming the machine and I wasn't thinking about not using it, this was just a thought for when for example I use it every day of the year and then go on a long distance flight where I have to sleep in the plane in an usual position without machine. Or as @Pugsy mentioned, to go on a travel and meet obstacles at the destination that prevent you from using your machine (like a room without any power sockets or power socket too far away from the bed and no extension cable).

You don't become "dependent" (in an addicted manner) on cpap any more than you become "dependent" on eyeglasses. They're much the same.

Pack an extension cable, there's no excuse for not using the machine.

[bonum.noctem]

2nd night on ASV:

screenshot-20181205-190513.png (206.13 KiB) Viewed 2774 times

Looks like I'm on track, but sleep quality was very bad, especially now that I seem to have caught a cold and my nose is driving me crazy. Woke up shortly after 4 a.m. because of the dog barking and could not get to sleep anymore. Took off the mask at 4:24 a.m. and stayed in bed till 6:30 a.m. but didn't fall asleep anymore. Was influence by that cold all day long, unsuccessfully tried an afternoon nap (without machine). It's evening now and although I'm ill and slightly exhausted, I again feel as if I had more energy all day than usual.

I'm slightly uneasy about the coming night because of my nose running all the time. not sure how this will collude with wearing my Airfit P10.

Any experience with preferring a different kind of mask while having a cold?

[Pugsy]

Are you sure it is a cold and not related to the humidity settings?
Nasal mucosa humidity reaction can mimic a cold or allergy attack. You might need more or less humidity.
Google "cpap rhinitis".
Now if you have a fever and sore throat...most likely a real cold but if just nasal symptoms it might be just rhinitis.

What I do when I have a cold...treat it just like I would if I wasn't on cpap.
For runny nose...oral meds to dry it up a bit...for congestion same thing or even a bit of nasal spray like Afrin.
I have always been able to get my nose clear enough to start the night on cpap and usually by morning I am breathing better with the mask than without. I find that humidity helps my congestion...if a steamy hot shower helps...increase your humidity setting.

When we have a real cold and feel like crap...our sleep isn't so great and it wouldn't be great even without us being on cpap.
We just accept it and move on.
If it's a real cold...don't freak out if you get some weird flagged events on your reports. Congested breathing can fool the machine.

[Weagle]

I can't speak for you, but it's taken time for me to get used to my ASV machine. I have a mix of central and obstructive apneas and have struggled through multiple masks and chin straps. I've had my machine for a month and I think I'm finally starting to get used to it. I still tend to wake up once during the night, usually about 4 hours after falling asleep right after my ASV machine increases pressures to prevent my apneas. The 2nd half of the night I tend to sleep like a baby.

For me, the first week or two was the worst, sometimes waking up 4-5 times a night, averaging less than 2 hours of sleep between wake-ups.

I wanted this machine to be the answer to all my sleep problems, but it appears that the apneas were just a part of my issues. My diet, lack of exercise, and bed-mates (wife and dogs) are all contributing to my sleep issues. I rarely get 6+ hours of continuous sleep, but when I do, it sure is nice.

[bonum.noctem]

3rd night on ASV:

screenshot-20181206-114611.png (208.89 KiB) Viewed 2736 times

Way not enough sleep, couldn't go to bed earlier because my nose was driving me crazy, had to get up two times for toilet and nose cleaning, woke up too early and could not fall asleep anymore, so I removed the mask and tried to doze till the later morning and finally got up at around 8 a.m.

@Pugsy, looks like a real nasal infection with sore throat and light fever, head feels like full of glanders (of yellowish and greenish color). I have applied nose drops that kind of helped. I may visit the doctor later today, but at first it's lunch and an after-lunch nap... Getting ill on the second day of therapy must just be bad luck, because I haven't been ill for quite some time.

I have humidity and temperature set to auto (don't know why SleepyHead shows that Climate Control is set to Manual) and it does not feel like it is too moist or not moist enough. Not sure if and how I should start playing around with it.

My nose is now inflamed on the outside and inside from excessively blowing my nose, I have applied some ointment but it makes wearing the (nasal pillow) mask quite uncomfortable. I guess nothing else to do then to dive through the next few days till the illness is gone.

So far I nevertheless think this is really working. The ASV machine clearly is the solution, the AirFit P10 mask is great, except that I always have to move the hose behind my pillow when I move from one side to the other, which is why I'm anxious to test the AirFit N30i once it becomes available in my country at the beginning of next year. Maybe it's time to look for a hose holder as well.

I can see that I am talking way too much about not really spectacular things, but I'm glad to be part of this community to share some insight.

[Julie]

Look up "Hose Buddy" - it can help keep the hose out of the way when you turn over.

[Pugsy]

Disregard SleepyHead's incorrect reporting of the humidity setting. That's a little bug in SH and the settings area of the software.
Mine used to tell me that my humidifier was totally disconnected and obviously I knew it wasn't. The settings area in general is buggier than hell sometimes.

And yes...does sound like you have the real deal ugly cold upper respiratory infection. It will just have to run its normal course and it won't be pretty in terms of sleep quality. Bad luck you caught it now. That time of the year for increased upper respiratory illnesses.
If you find that hot steamy showers help your nose feel better then you might consider turning off the auto setting and going to manual for the humidity....something like a setting of 6.
The auto setting gives something close to a setting of 4 if compared to a manual number and thus not all that high since the machine will go to 8 I think. Auto is sort of middle of the road.

[Weagle]

Not sure if it's of any help or not, but I tend to toss and turn from side to side at night also. I use the DreamWear Full Face mask and a chin strap. I know DreamWear has a nasal only mask also that might work for you. I bring it up because the hose attaches at the top of the head, not in the front like so many others. With the swivel on top I never have issues with hose placement once I'm asleep. I love that part of the DreamWear line.

[bonum.noctem]

Not sure if it's of any help or not, but I tend to toss and turn from side to side at night also. I use the DreamWear Full Face mask and a chin strap. I know DreamWear has a nasal only mask also that might work for you. I bring it up because the hose attaches at the top of the head, not in the front like so many others. With the swivel on top I never have issues with hose placement once I'm asleep. I love that part of the DreamWear line.

Yes, I know about the DreamWear, but due to inconsistencies in their product design (noisy side arms, missing muffler) I haven't tried it even when they offered it at the sleep clinic. I am sensitive to noise, which is why I was explicitly looking for the most silent machine and mask. That's also why I have high hopes for the ResMed AirFit N30i which is supposed to be the next generation top swivel mask. My equipment provider already promised that I can have one as soon as they get the first samples in.

Look up "Hose Buddy" - it can help keep the hose out of the way when you turn over.

Not sure if a hose holder is usually covered by the health care provider and especially mine, I've just sent an inquiry about it. That Hose Buddy seems like a really fine solution, especially as it can be brought on travels. Unfortunately I could not find something comparable here on Amazon in Europe and shipping from the USA costs a fortune.

If you find that hot steamy showers help your nose feel better then you might consider turning off the auto setting and going to manual for the humidity....something like a setting of 6. The auto setting gives something close to a setting of 4 if compared to a manual number and thus not all that high since the machine will go to 8 I think. Auto is sort of middle of the road.

So the auto setting does not actually measure air humidity and auto adjusts accordingly but just applies the middle value? I thought that's the whole point in having an auto setting for hose temperature and humidity.

I think I'll nevertheless leave it on auto for the time being, as I don't want to fiddle around under the current conditions with my cold. I have looked up some "cpap rhinitis" info, but I don't assume it applies to me as my nose never had made troubles due to air humidity levels. I also think that "cpap rhinitis" is especially a problem for machines without humidifier, which makes the built-in humidifier simply a must-have. Funnily my equipment provider did not send the ClimateLineAir hose by default, I especially had to request it, although it makes no sense at all to operate a humidifier without heated hose.

[Julie]

Cpap rhinitis is a RESULT of using a humidifier set too high for your conditions (already humid enough in the room), so what you just said doesn't make sense.