Detective work needed when we don't feel the good numbers

[kteague]

I can relate to so much of what's already been said related to other health conditions and their medications affecting both sleep and daytime functioning. Got a couple other things to throw in the pot...

Those who have been around here for a while know I have an issue with how I as a new CPAP user was instructed to use the ramp feature by both my sleep doctor and the DME person who gave me my equipment. Their advice literally almost killed me. I had already seen a long slow decline in my abilities but had high hopes getting on CPAP would salvage my career. Instead the dramatic decline was like a bobsled ride with no end in sight except for crashing. I was one who fell asleep before the head hit the pillow, woke up every few minutes, and fell back asleep just as fast. I dutifully followed their advice to just hit the ramp to go back to sleep. My ramp was set up to start at 4 and last for either 30 or 45 minutes. Can't remember any more - been too long ago. Anyhow, this misuse of ramp condemned me to living 5 months with my nights at 4 or barely above, when a therapeutic pressure for me was 12. I personally think misuse of the ramp feature is a significant CPAP failure factor. For some it is a godsend, but not for everyone. A reduced ramp time and increased ramp pressure (credit to members here) is what helped me succeed with CPAP after quitting when I felt CPAP was killing me. No issue with ramp itself, just if you sleep during much of your ramp time, you are unprotected from your OSA during that time. Not good.

And then there is my other soapbox issue - PLMD. If the sleep docs were more in tune to the very real possibility of limb movements worsening after starting CPAP, they could have a dual approach instead of waiting months just to see if you were going to be one of the ones where CPAP helped their limb movements. In the interim, CPAP gets blamed for lack of improvement in sleep or daytime symptoms when the culprit is really the legs.

So add to the list:
RAMP Misuse
Limb Movements

[MaxDarkside]

I have about 10 maladies. I cannot expect that I should feel great by treating one of them; OSA (tho it surely helps). Same goes for a lot of people, particularly if you are over 50. Your warranty runs out at 50, the maladies accumulate. Feeling like shnit probably goes with the chronological territory.

[Grace~~~]

Thank you for this thread.

It's funny how when you see an "old thread" you can almost think that nothing is relevant to 'today'.

For newbies, it is amazing the collective wisdom that is being offered within this group / forum. I am sure you all get tired of posting the same brilliant wisdom over and over as we newbies appear. Though I also understand the feeling of wanting to 'be in the moment' and thinking everything must be written within the last hour.

This thread, and the more current "OT thank you thread" both have the same vibe to me. I can't absorb all the information but my "inner child" wants to cling to the ankles to some of these posters and just beg "please help me figure this out!"

The 'adult me', however, can't even prioritize enough to ask questions.
So just reading along and hoping things are 'sinking in' is the best I can do.

Just reading and posting 'Thank You'
over and over and over and over and ~~~

[Jay Aitchsee]

Yes, I'd just like to confirm that it does take a lot of work to discover the cause(s) of poor sleep, if it continues once sleep disordered breathing has been controlled. Largely, I think, because there is no single test that will reveal the source from a myriad of possibilities. So one has to go through them one at a time. Many of the possible causes are mentioned above. Some can be ruled out by an individual, but many need the assistance of a doctor. The patient must be proactive and insistent on getting a complete physical exam and bloodwork looking for those items which could cause poor sleep and fatigue. Not just the usual, typical annual physical, but one tailored specifically to uncovering some of the items listed above.

Next, from my own experience, one has to treat sleep hygiene nearly as a religion and become devout in its practice. Not just, "oh, I do that", but really do it - all of it. I think somebody mentioned above that many of us have probably built bad habits over the years of untreated apnea that we probably don't realize or think about, like excessive caffeine consumption, for instance; or, inappropriate bed and rise times. Implementing good sleep hygiene takes work, especially to overcome bad habits, but it must be done, completely.

Finally, I'd like to mention that many posting here seem to exhibit classic symptoms of depression, not surprising, since poor sleep caused by apnea can lead to depression, but once the apnea is treated, depression can linger and continue to contribute to poor sleep, becoming a rather vicious circle. Unfortunately, denial is common with depression and many don't seek the professional help needed to overcome it.

[robysue]

T
The 'adult me', however, can't even prioritize enough to ask questions.

Figuring out a way to prioritize your questions is an important part of getting the help you need to make this crazy therapy work.

Start with asking yourself the following questions:

1) Are you comfortable when you put the mask on and lie down to go to sleep at night? If not, how uncomfortable are you? And what is making you uncomfortable?

2) Can you get to sleep in a timely fashion after you put the mask on? If not, do you become increasingly uncomfortable when you are trying to get to sleep?

3) Are you frequently waking up in the middle of the night and having trouble getting back to sleep?

4) Are you taking the mask off in order to get (back) to sleep? Or are you taking the mask off in your sleep?

5) Are you fighting leaks all night?

6) Are you sleeping reasonably well all night long with the mask, but you're still feeling bad during the daytime? If so, what does the data look like? Is the AHI too high? Are there leak problems that you are sleeping through?

[Grace~~~]

T
The 'adult me', however, can't even prioritize enough to ask questions.

Figuring out a way to prioritize your questions is an important part of getting the help you need to make this crazy therapy work.

Start with asking yourself the following questions:

1) Are you comfortable when you put the mask on and lie down to go to sleep at night? If not, how uncomfortable are you? And what is making you uncomfortable?

2) Can you get to sleep in a timely fashion after you put the mask on? If not, do you become increasingly uncomfortable when you are trying to get to sleep?

3) Are you frequently waking up in the middle of the night and having trouble getting back to sleep?

4) Are you taking the mask off in order to get (back) to sleep? Or are you taking the mask off in your sleep?

5) Are you fighting leaks all night?

6) Are you sleeping reasonably well all night long with the mask, but you're still feeling bad during the daytime? If so, what does the data look like? Is the AHI too high? Are there leak problems that you are sleeping through?

Thank you for the help, Robysue,

Let me try to answer these questions.
I will use red

T
The 'adult me', however, can't even prioritize enough to ask questions.

Figuring out a way to prioritize your questions is an important part of getting the help you need to make this crazy therapy work.

Start with asking yourself the following questions:

1) Are you comfortable when you put the mask on and lie down to go to sleep at night? If not, how uncomfortable are you? And what is making you uncomfortable? I am not too uncomfortable. I am mostly 'HOPEFUL', though of course it feels weird

2) Can you get to sleep in a timely fashion after you put the mask on? If not, do you become increasingly uncomfortable when you are trying to get to sleep? No. I have nothing urgent to do at the moment so I am not stressed about sleep. I had been in bed for more than two years and only have been well enough to 'get up' the last few months ... and I have just realized I may live - or that 'currently *I AM* alive. (diagnosed stage IIIC in late 2013 - 17% 5 yr. survival) I actually am even trying to get back to work. Very early stages of returning to work, just getting things together, but for a long time I had accepted that I would never work again. So this is a happy time even though I am scared it could all come crashing down any moment. I suppose if I had work responsibilities and clients depending on me, I would be much more stressed about sleep.

3) Are you frequently waking up in the middle of the night and having trouble getting back to sleep?
YES

4) Are you taking the mask off in order to get (back) to sleep? Or are you taking the mask off in your sleep? Yes. I have the bad habit of feeling like I have "done my workout" and now I need to take this off and get some sleep. I am sorry. I know that is horribly wrong.

5) Are you fighting leaks all night? I don't know. I actually like wind blowing in my face. So maybe I like leaks? I don't have any sense of "fighting them". I love sleeping on a boat on a windy night. I have set up a fan to blow super hard at me so that the rest of me feels as windy as my nose. Is that normal?

6) Are you sleeping reasonably well all night long with the mask, but you're still feeling bad during the daytime? If so, what does the data look like? Is the AHI too high? Are there leak problems that you are sleeping through?

I am not far enough along to post data yet. I think my AHI's are between 7-12 ish. I have never slept more than 90 minutes with the mask at a singe time. I don't really feel super bad during the day? Not in comparison to how I have felt for the last two years of active chemo and radiation and multiple surgeries. I guess it's relative? Though I think I may actually feel a little better the last few weeks. Impossible to know how much the cpap machine might be part of that in physical reality or just in some psychological way. Sheesh. I am probably going to regret these posts if I live and get well again. You know I NEVER posted about the CA. Never really talked about it even to friends. So this is very odd to be spewing it here.

[Sonnyboy]

I deleted my post.