One year on with CPAP - lessons learned

[Tassie Devil]

The first most important lesson learned:

1. Be persistent and expect to counter difficulties. When you think about it the reason is obvious - the brain has got used to a certain ritual about relaxing to go to sleep so strapping a blowing mask over the face is not normal and will initially disrupt the sleeping process. Because of this I impatiently gave up on CPAP 5 years ago despite a proven diagnosis of apnea. So yes, second time around, with a more positive attitude, the brain ultimately accepted the change, but it did take many weeks.

The second lesson:

2. CPAP does not necessarily produce a significant difference in mental health so one then wakes up alert and fresh compared to the previous groggy state. It might do this with some people, but it did not with me leading to the erroneous conclusion CPAP was a waste of effort. But I must be sleeping better as my wife now has a peaceful night with me, not disturbed by my snoring or snorting (even worse). There could be other health problems that CPAP cannot assist with but at least it rules out sleep apnea as the main problem. In my case it turns out I had an irregular heart beat so a pacemaker was required. Unfortunately this has not been a complete cure either so investigations are on going. Old age (I'll be 80 next month) can be challenging at times.

Other lessons:

3. Some masks seal much better than others with full face masks offering more opportunities for leaks (which can wake one up) than nasal masks. And forget chin straps. They are not only cumbersome but were not needed for me.

4. Yes there are significant differences in the S9 ResMed machines. I found the AUTOSET so much better than the fixed pressure ESCAPE.

5. Care must be exercised with filling the humidifier tank. Overfill and if water enters the tubing it fouls up the small plastic valve in the mask making disturbing clacking noises which make sleep impossible.

I've posted this in the hope it might encourage others who are experiencing initial problems with CPAP. It is a lucky person who avoids these.

John

[Papit]

The first most important lesson learned:

1. Be persistent and expect to counter difficulties. When you think about it the reason is obvious - the brain has got used to a certain ritual about relaxing to go to sleep so strapping a blowing mask over the face is not normal and will initially disrupt the sleeping process. Because of this I impatiently gave up on CPAP 5 years ago despite a proven diagnosis of apnea. So yes, second time around, with a more positive attitude, the brain ultimately accepted the change, but it did take many weeks.

The second lesson:

2. CPAP does not necessarily produce a significant difference in mental health so one then wakes up alert and fresh compared to the previous groggy state. It might do this with some people, but it did not with me leading to the erroneous conclusion CPAP was a waste of effort. But I must be sleeping better as my wife now has a peaceful night with me, not disturbed by my snoring or snorting (even worse). There could be other health problems that CPAP cannot assist with but at least it rules out sleep apnea as the main problem. In my case it turns out I had an irregular heart beat so a pacemaker was required. Unfortunately this has not been a complete cure either so investigations are on going. Old age (I'll be 80 next month) can be challenging at times.

Other lessons:

3. Some masks seal much better than others with full face masks offering more opportunities for leaks (which can wake one up) than nasal masks. And forget chin straps. They are not only cumbersome but were not needed for me.

4. Yes there are significant differences in the S9 ResMed machines. I found the AUTOSET so much better than the fixed pressure ESCAPE.

5. Care must be exercised with filling the humidifier tank. Overfill and if water enters the tubing it fouls up the small plastic valve in the mask making disturbing clacking noises which make sleep impossible.

I've posted this in the hope it might encourage others who are experiencing initial problems with CPAP. It is a lucky person who avoids these.

John

Thanks, John. That's a great list of tips. I had some difficulty like yours in para. #1. I worked around the problem by getting out of bed, reading, walking around and watching tv until I was dog tired. I even took a sleeping aid. Then I again put the mask on and went right to sleep. As a routine I still like to be tired before going to sleep.

[Denial Dave]

Almost immediately, I stopped needing the middle of the night bathroom run... But I didn't notice any other changes until almost 6 months into my CPAP therapy... however, my wife noticed definite improvements in my mood within 60 days!

There was a time around the 6-7 month period where it felt like my brain was rushing on caffeine. My guess is that it was my brain getting accustomed to getting oxygen all night. It lasted about 2 months and I was back to normal.

hard to believe that I am closing in on the 3 year mark!

Dave

[cyclist56]

As someone about two months on CPAP and not feeling much better, it's good to know that it could take much longer before I feel more energy. Need patience.

[Tequila Mockingbird]

After only a few weeks on CPAP, I had these changes:

No longer needed to go to the bathroom at night (that happened on the first night).
Libido started coming back after three days.
Much more positive mood, and less grumpy.
More energy.
More confidence.

I'm still fighting with the darn hose at night. It's like sharing a bed with a python. Its favorite thing to do is to wrap around my neck or head. I'm going to buy a hose lift.

What I discovered so far is that there is a lot of trial and error involved. It has taken me three different masks to find one that is moderately comfortable and doesn't leak. Mask choice is definitely a very individual thing, based on many different factors.

The REMstar 60 Auto is my nemesis. I HATE that machine. It sat there looking innocent, quietly puffing out air, but I know what it was thinking. I wanted to throw it on the bonfire and dance around it while it burned.

The positive news is that I've just got a Resmed and we are already good friends.

[zonker]

thanks for the post, john. i am in complete agreement with your second point. i have never jumped out of bed with a smile on my lips so it's not too surprising that i don't now. but there have been little changes. no bathroom breaks in the night. no waking up at 3 am and laying there and laying there and LAYING THERE wishing i could go back to sleep. no more morning headaches.

i don't feel particularly more alert the next day. but i'm quite satisfied with what i've gotten after a couple of months on the machine!

[zonker]

After only a few weeks on CPAP, I had these changes:

No longer needed to go to the bathroom at night (that happened on the first night).
Libido started coming back after three days.
Much more positive mood, and less grumpy.
More energy.
More confidence.

I'm still fighting with the darn hose at night. It's like sharing a bed with a python. Its favorite thing to do is to wrap around my neck or head. I'm going to buy a hose lift.

What I discovered so far is that there is a lot of trial and error involved. It has taken me three different masks to find one that is moderately comfortable and doesn't leak. Mask choice is definitely a very individual thing, based on many different factors.

The REMstar 60 Auto is my nemesis. I HATE that machine. It sat there looking innocent, quietly puffing out air, but I know what it was thinking. I wanted to throw it on the bonfire and dance around it while it burned.

The positive news is that I've just got a Resmed and we are already good friends.

yes a LOT of trial and error. it seems to me that i would tweak or try something and then suddenly, it's something else! i know from reading the forum that we are each special snowflakes, but i didn't take into account how different we all are when i first started this.

an example is: before i got my machine, i thought i'd be wrestling with my hose, too. turns out, that's not a problem for me.

of course, having said that, i will go to bed tonite and wake up entwined in my hose!

[Tassie Devil]

Interesting replies.

It seems some people have problems with the "python" hose, something which, maybe oddly, has never been as bother to me.

My ResMed is in a cupboard beside the bed on a shelf lower than the mattress and I've never had a tangle or hose fight. When I'm facing towards the cupboard the hose just hangs down and is no problem when I turn over the other way. But I do have to "bash" the pillow sometimes to avoid being disturbed by the sound of air blowing out of the mask onto the pillow.

But I should not leave the impression each night here is blissful sleep. It can vary from 5 hours to a once record of 9!!! A bathroom call in the early hours always terminates CPAP use with me so, if still tired, I skulk off to another room where more sleep sometimes occurs with our two cats, let inside from the laundry, often accompanying me (they are banned from the marital bed ).

Bottom line I think the person who ends up more alert and significantly more awake is lucky. The rest of us achieve degrees of improvement only but that is better than nothing. Breathing properly during sleep must result in a healthier body than one periodically starved of oxygen

[rachelp]

After only a few weeks on CPAP, I had these changes:

No longer needed to go to the bathroom at night (that happened on the first night).
Libido started coming back after three days.
Much more positive mood, and less grumpy.
More energy.
More confidence.

I'm still fighting with the darn hose at night. It's like sharing a bed with a python. Its favorite thing to do is to wrap around my neck or head. I'm going to buy a hose lift.

This is my experience exactly right now to the hose. I just ordered a hose lift so hopefully it's smooth sailing after that because it's my only annoyance. I actually kind of enjoy the air coming through the nasal pillows. My whole life I've had a stuffy nose and I feel like the air opens it up.