Newbie - worse with Apap

[Jane9999]

Sleeprider:  You don't feel I am listening to you and I don't feel you are listening to me, so I am fine if you skip my posts.  

For others: I welcome your input.  Hydrangea's input made a big difference for me and was not something I had run into before.

IMO, positional Apnea is a maybe but there is no evidence to support this since my severe apnea instances happen in both my sleep positions as shown by my charts for 4/26.  So the chargs indicate I do not have positional apnea, but I am still doing some investigating in this area in case. I ruled out a cervical collar several days ago - no difference with/without one.  But I plan to play with a contour pillow (in the mail) and will continue to test for positions (one night does not give a full picture).

I also know that REM related apnea can look the same and is very common.

And there might be other factors - I would not be surprised if several things contribute to my apnea.
Being very familiar with C/Apaps - having sorted thru my other half's issues with him - I know it is not always straight forward.  Often a mask change can make a big difference even though nothing pointed to any mask problems.

I am getting a new mask later this week.  This one bothers me enough I feel it is causing me to not sleep well even if it is not causing more apneas, so it is worth trying a different one out.  Especially since the DME, while good, was not and is not doing any full mask fittings during these corona times. [Good DMEs will fit the mask while the person is sitting and then with the mask attached to a running machine have the person pretend to sleep in all their normal sleeping positions while the mask fit is fully checked.]

[Gideon]

I would suggest you do your own research on BiLevel therapy since you are refusing to take in advice on using it.

[Jane9999]

Bonjour, 
I am aware of bilevel therapy and yes that might work better for me (thanks for mentioning that), and there are several other tools that also might work much better for me than a cpap.  

I have been and continue to do my own research as I indicated in my reply.  New O-PAP therapy looks very promising, I wish that was available thru a vender at this time as it would help a lot with my intolerance of high pressures, but I didn't see it offered by any venders yet (just in research studies).

I am taking advise from people who are offering something useful like Hydrangia (including places outside this board) especially when what they offer matches my symptoms.  But for someone who can't tolerate the higher pressures of their current settings (can't fall asleep, can't stay asleep) "advising" them to increase the pressure even more is very short sighted and not of value (just more waking up or not falling asleep).  And saying This is the Solution when the description of the solution doesn't match my symptoms....., that doesn't go to the top of the list of things I have been advised to try when other advise is being given that fits better. 

On top of that, making snarky comments like go ahead and ignore me "if you want to keep suffering..... " is very unprofessional.  If I wanted to "stop suffering" I would have dumped the cpap after day one since my sleep is tons better without it.



What would have been helpful is advise on how to tolerance to high pressure (level 8 brings on great difficulties for me - falling asleep and staying asleep, let alone higher than that).  But that advise was missing.

I sleep fine without an Xpap (my circadian disorder caused problems but it is now well controlled).  I believe a cpap is making my sleep worse not better because discomfort is waking me up a lot and preventing deep sleep (high pressure, mask fit issues, etc.).  Those issues need to be addressed FIRST! to see if I can tolerate an APAP before it can be determined if an Apap can improve my sleep at all.

There are a lot more approaches than just up the pressure but maybe this is what this board focuses on. 

I don't expect to pop back on this board, I am putting my effort into other places where I am getting good advise with out the side stuff going on.
Anyone can PM me if they want to offer suggestions other than up the pressure .

[SarcasticDave94]

Just be aware the PM area is not for giving advice. Discussions need to stay within the open appropriate threads.

I admit I have not read over this thread very closely, but have you tried to increase the pressure slightly? Most of the CPAP machines can be adjusted for steps of adjustment other than 4 to 5 or 5 to 6 as an example. There are fractional steps within the settings such as 5.2 etc. Maybe you could try a slight adjustment to see if it helps any.

[Hydrangea]

I have two other thoughts to share.

Ramp. It helps the pressure be low as you're falling asleep, but then lets the pressure raise after you're less prone to notice/care. You could raise the min pressure, but use ramp so it's lower than min while you're falling asleep.

Soft setting. ResMed machines have a "soft" setting, which makes the pressure adjustments be not quite as aggressive. I got poor sleep on my ResMed (despite a low AHI) until I turned on the soft setting.

I wonder if between "soft" and ramp, you'd be able to successfully implement the changes.

[Jane9999]

I wanted to add an Update for others so they have info to help them with their Xpap struggles.

Short story, a new mask made a big difference. I knew that a mask can feel ok but not be ok (raise AHI), so it can be hard to know if there is a mask issue... I wanted to give things a good try (adjusting pressure, mask fit, having both an SD card and a Oximeter and Somnopose to gather more info) since I am a new user and I know several things can impact good Apap therapy - before just saying it must be the mask.

The DME was not helpful in confirming/figuring out if I had a mask issue so I talked to Resmed and gave them my suspicions about the mask fit. The rep strongly agreed the mask was not fitting correct. While the charts show low levels of leak and myair gives me a happy face, they were there continually and I if the mask shifted a little (which it would while I moved around at night), I could feel a slight leak at the top and at the bottom sides. The headgear was not tight enough (Resmed said it should fit snug like a cap) and I think the mask was a little to tall and a little too wide - maybe .5" each direction.
I went back and got an AirFit F30 and not only has my O2 been better (not the crazy dips down though still not optimal), but I am no longer waking up every 10 minutes to yank my mask off my face so I can breath - that alone probably increased my sleep quality a lot. The pressure line now shows fairly steady unlike the ones I posted where it did huge drop and rises.

If a sleep score (quantity and quality) was 0 = horrid and 10 = great, I would rate it a 3 on the old mask and a 5 on the new mask, it was a huge improvement - went from miserable sleep to just bad sleep . However, sleeping with no Apap (or mask) I typically get an 8 so I still am aiming to get at least back to that level with a machine. For now I often skip nights with the machine because several nights of poor sleep in a row is miserable. I have stronger empathy for those with sleep apnea now since experiencing those symptoms (though mine are with the Apap on).

Note: The AHI readings (or even the O2) do not match my sleep quality. For the couple times I have gotten low AHIS (1.79 for a nap one day, 3.23 for one night sleep) I still felt horrible like I had slept very poorly (tired, groggy, fuzzy head, etc.).
With the new mask my AHIs typically go from 11-16 (plus the 1.79 for the nap) where as the old mask (with the SD chip) were 3 nights of 3.23, 17.5, and 8.13. Before the SD chip, MyAir gave AHIs between 5.5 & 20) but I am not sure how accurate that was (especially since I got very high mask no leak scores when the mask was doing some leaking).
This confirms my suspicion early on (even before the SD chip) that discomfort is interrupting my sleep more than the apneas or drop in O2.

I talked to the Dr today, she said that the bad periods are likely REM sleep as that is the REM apnea sleep pattern (very bad for a shorter time). Even with the new mask, while sleeping on my back I will suddenly get a lot of apneas for about a half hour - Oscar says 40+ for that period, then they go away. Surprisingly when that period is done (not in the middle) is when I wake and want to take the mask off. Sometimes O2 drops also at least towards the end of that string of apneas. It might just be a back sleeping & REM combo that is bad for me and slide sleeping and REM works fine.

The Dr agreed I should try a BiPap so I will get one hopefully this week. And she mentioned we could also try an ASV machine though I rarely get central apneas.

Hydrangea, I tried the soft setting. I am not sure I saw a difference, I can check again with the new mask now things are better.
I haven't tried ramp because I read before sleeping and it sits around 4-6 while I read, then sometime after I fall asleep it climbs up (within about 30 minutes) to the higher level. I figure that works the same as ramp would.

Dave, I have tried that by accident for the lower number - resetting numbers without glasses on. I will keep that in mind with the new machine - hopefully that will work to adjust numbers a little bit for fine tuning.

Hydrangea and Dave - I struggle to breath out if the exhale is 8 or above - that includes sitting up and wide awake.
I sleep better if the exhale pressure is lower (that was my first try after playing with it sitting up the first day). I tried a level 8 for inhale to try and get used to the machine at a more comfortable setting. That was with the old mask and before I had a SD card or Oximeter pulled out, so I don't know the whole story except my AHIs were high. I seem to hover around 9.5-11 at night for my max inhale pressure now. So if I could get that exhale down to a 6 I would be happy and I think I would sleep better. A bipap should do that , I hope I get back to a sleep quality level of an 8 (that I get with no machine). Then I can start fine tuning things.

[SarcasticDave94]

Congrats on a victory. Masks can make or break the whole thing as you found out.

On pressure or other settings: Each here have various hurdles to jump over and it seems to be on a scale or perspective. My hurdles vs yours are individual. My needs of pressure, etc. are not the same as yours, but how to optimize is somewhat standardized in what action works or doesn't. We can give pointers here to success, but it's up to us individuals to do the jumping. Just an analogy on how things work when dealing with apnea is all.

Anyway, best wishes for more success.

[Gideon]

On getting a BiPap/BiLevel, request a ResMed. All in all they seem to be more preferred by users and by the 'experts" here.

[Jane9999]

Thanks Fred.

[Hydrangea]

That's great!

I agree with Dave - things are so variable and individual.