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[Treatment] Seven weeks of misery - update
#11
RE: Seven weeks of misery
Another thought is your nasal congestion could be causing your difficulties. You might want to look into nasal rinsing and if that doesn't work, see an ENT for an evaluation.

49er
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#12
RE: Seven weeks of misery
(03-19-2016, 09:56 AM)0rangebear Wrote: I can empathize with you plight my, as first six weeks could also be described as Hell. I saw that my body and mind began to adjust in week seven- I am in week 11 now and my time with the mask on is 5.03 hours. It I no call it longer torture.

This How I deal with the in-somnolence

1)I tuned the ramp off
2)Start on Mask fit- The pressure will rise quickly to the max pressure setting and the cycle back to the Min pressure setting.

3)I focus my thought on eliminating the mask leaks ( I had big leaks before I started doing this) I have many 0 leak nights now.

4) When I have exhausted that thought process, I focus my mind on breathing deeply through my nose, thinking about how good the warm humid air feels. (as soon as I fall a sleep I know my mouth open a bit -but I have a mouth and nose mask so I am ok with expect that)

I usually feel the Mask Fit cycle back to the low pressure right before I fall asleep.

* no more dehydration issues
* no more Mask leak issues
* no more imaginations or fears that exalt themselves and prevent sleep.

If you need more to calm you mind try some memorization

“O sleep, O gentle sleep, Nature's soft nurse, how have I frightened thee; That thou no more will weigh my eyelids down, And steep my senses in forgetfulness?”
― William Shakespeare, Henry IV, Part 2

Good luck and my the Good Lord be with you

You have just about the same setup as me!

I tried using the mask fit cycle right before turning the machine on. But, mine seems to cycle back down before my head hits the pillow?

Towards the end of your 5.0 hrs, what happens? Do you know deliberately remove your mask? Do you take naps?
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#13
RE: Seven weeks of misery
(03-19-2016, 11:59 AM)Luvmyzzz Wrote: I'm new to the forum, but old to the CPAP! I have a little experience to share and may be able to give you some insight on your dilemma. If you are new to the CPAP,
the mask itself is a great hurdle to clear, I tried wearing it around the house (when possible) to get used to it, switching to wearing it for an hour while watching TV or, relaxing activity before sleep, and plugging in when I climb into bed (my senses have been desensitized to the feeling of something on my face). Just a thought to share, hope it helps.Sleep-well

Yes, I have done the same! This was a Great help in the first few days. Also, I used a mirror in bed to get a good look at the mask and how it fit. And all this helped me fall asleep with the mask. Keeping it on has been a different story.
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#14
RE: Seven weeks of misery
(03-19-2016, 12:06 PM)PoolQ Wrote: ... but my number for starting pressure is 5.6-5.8, found by trial and error without having to try sleeping with it, just laid down and see if I could relax.

At the Clinic, I was fine with the pressures. But laying down was very different. Besides the pressures, I even had to change the mask straps just to get to sleep.

... Many times my flow limitations were caused by nasal congestion that took a while to build up. I use nasal strips ...

My congestion builds up too. I have some of those nasal strips. Will give it a try!

... Talk with your Doctor ...

I am pretty sure I am headed for a bi-level machine. But the insurance wants me to try this first.

... You may be right on the edge of being comfortable and after 90 minutes of "putting up with it" you have had enough and wake up.

Yep, that describes it!

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#15
RE: Seven weeks of misery
(03-19-2016, 04:34 PM)vsheline Wrote: ...
When FL causes sleep problems, this is called Upper Airway Resistance Syndrome (UARS)...

...You may be able to avoid these sleep disturbances by raising your Max Pressure setting while keeping EPR set to its maximum, 3.

Thanks! This is what I am looking for. (The nurse barely looked at my data and I will not see the doctor for another month.)

I noticed the FL occurred right before a big leak and I assumed the pressure ramped up for the leak. So, I actually lowered my Max pressure thinking the extra Breeze from the leak woke me up. Will try a higher Max.


...Typically, however, a more expensive bilevel type of CPAP machine is needed to optimally treat/prevent UARS...

Yes, I think I am headed for a bi-level (with oxygen?). Just need to satisfy insurance requirements first.
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#16
RE: Seven weeks of misery
(03-21-2016, 03:30 AM)sevenlevels Wrote:
(03-19-2016, 09:56 AM)0rangebear Wrote: I can empathize with you plight my, as first six weeks could also be described as Hell. I saw that my body and mind began to adjust in week seven- I am in week 11 now and my time with the mask on is 5.03 hours. It I no call it longer torture.

This How I deal with the in-somnolence

1)I tuned the ramp off
2)Start on Mask fit- The pressure will rise quickly to the max pressure setting and the cycle back to the Min pressure setting.

3)I focus my thought on eliminating the mask leaks ( I had big leaks before I started doing this) I have many 0 leak nights now.

4) When I have exhausted that thought process, I focus my mind on breathing deeply through my nose, thinking about how good the warm humid air feels. (as soon as I fall a sleep I know my mouth open a bit -but I have a mouth and nose mask so I am ok with expect that)

I usually feel the Mask Fit cycle back to the low pressure right before I fall asleep.

* no more dehydration issues
* no more Mask leak issues
* no more imaginations or fears that exalt themselves and prevent sleep.

If you need more to calm you mind try some memorization

“O sleep, O gentle sleep, Nature's soft nurse, how have I frightened thee; That thou no more will weigh my eyelids down, And steep my senses in forgetfulness?”
― William Shakespeare, Henry IV, Part 2

Good luck and my the Good Lord be with you

You have just about the same setup as me!

I tried using the mask fit cycle right before turning the machine on. But, mine seems to cycle back down before my head hits the pillow?

Towards the end of your 5.0 hrs, what happens? Do you know deliberately remove your mask? Do you take naps?

Sometime I lie there and try to sleep with the mask on, but I just get a lot of sleep wake junk so I give up; take off the mask roll over and sink my face into the pillow then I sleep like a baby
2004-Bon Jovi
it'll take more than a doctor to prescribe a remedy

Observations and recommendations communicated here are the perceptions of the writer and should not be misconstrued as medical advice.
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#17
RE: Seven weeks of misery
Looks like you have received lots of good information and some ideas, as you try them give some feedback in this thread and we'll keep trying to get you over the misery.
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#18
RE: Seven weeks of misery
I increased my max pressure by .6 to 11.6 for the FL events.
And added .2 to make it 4.2 for my start pressure for the panic.
After correlating my AH numbers on good nights, I found a ramp time of 5 mins was effective for Sleeping.

Last night I was able to keep the mask on for 7 hours! Although, I did wake up twice just to restart the cycle.

Felt much better today. Until 9:00 PM when I was overwhelmed and had to take a nap for 2 hours.

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#19
RE: Seven weeks of misery
(03-20-2016, 06:53 AM)49er Wrote: Another thought is your nasal congestion could be causing your difficulties. You might want to look into nasal rinsing and if that doesn't work, see an ENT for an evaluation.

49er

Read "Sinus Cure"? and increased the salt in my saline solution and started tilting my head back when using nose drops.
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#20
RE: Seven weeks of misery
(03-22-2016, 07:26 AM)sevenlevels Wrote: I increased my max pressure by .6 to 11.6 for the FL events.
And added .2 to make it 4.2 for my start pressure for the panic.
After correlating my AH numbers on good nights, I found a ramp time of 5 mins was effective for Sleeping.

Last night I was able to keep the mask on for 7 hours! Although, I did wake up twice just to restart the cycle.

Felt much better today. Until 9:00 PM when I was overwhelmed and had to take a nap for 2 hours.

Well that's all good news! When I was adjusting my starting pressure I found I could tell if it would work in less than 5 minutes. Laid down and try and relax with the mask on. Ended up at 5.6-5.8 starting pressure. I also had to restart many times in the beginning, have not done it for months now.
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