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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Soothest Sleep
 
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Re: And the journey begins....

Postby Soothest Sleep on Fri Nov 10, 2017 11:57 pm

Mittens wrote:I'm discouraged. And tired. Supposed to try a third mask tonight, and am almost tempted to take a night off. Things had gone well, with low leaks, low AHI, and it seemed sleep was easier. Until this past week, anyhow. I didn't expect to feel like I was going backward, but I do. (And it is hard to admit that, too.)


Don't give up. You're 5-6 weeks in, right?--still at the beginning of your therapy journey. Getting the mask right (or the right mask) can take more time than we might prefer, but it's an important task to work on. Not everyone has the miracle experience of complete comfort on Night 1. Are you keeping a journal about your treatment: problems, solutions tried, how you feel in the morning, sleep data, current settings (and any subsequent changes), how often symptoms are still showing up (if any), positive changes in other aspects of your health/bodily functions. . .whatever thoughts and data are important to you. When you are fine-tuning your therapy or comfort settings, make only one change at a time, give that several nights' trial before making another change, and record your findings. That makes it easier to monitor what is working for you and what is not.

Take it one day at a time, and look for any little positives you can, then acknowledge those successes. You will see that they do add up over time. We all have individual timelines to adapt to the lifestyle change; but we don't know at the beginning just what our own timeline looks like. It's one of those "hindsight=20/20 vision" things. It can also be a "two steps forward, one step back" process as well. If you don't feel like trying the third mask tonight, then don't. But please use your other mask so you can get a night of therapy in. You want to be building a habit of using the equipment every night.

Hang in there; this is all do-able.

Jean
O soft embalmer of the still midnight,
Shutting, with careful fingers and benign,
Our gloom-pleas'd eyes, embower'd from the light,
Enshaded in forgetfulness divine
-- John Keats

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Arlene1963
 
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Re: And the journey begins....

Postby Arlene1963 on Sat Nov 11, 2017 4:40 am

Soothest Sleep wrote:
Take it one day at a time, and look for any little positives you can, then acknowledge those successes. You will see that they do add up over time. We all have individual timelines to adapt to the lifestyle change; but we don't know at the beginning just what our own timeline looks like.
Jean


+1

Mittens
 
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Re: And the journey begins....

Postby Mittens on Sat Nov 11, 2017 6:39 am

Soothest Sleep wrote:Don't give up. You're 5-6 weeks in, right?--still at the beginning of your therapy journey. Getting the mask right (or the right mask) can take more time than we might prefer, but it's an important task to work on. Not everyone has the miracle experience of complete comfort on Night 1. Are you keeping a journal about your treatment: problems, solutions tried, how you feel in the morning, sleep data, current settings (and any subsequent changes), how often symptoms are still showing up (if any), positive changes in other aspects of your health/bodily functions. . .whatever thoughts and data are important to you. When you are fine-tuning your therapy or comfort settings, make only one change at a time, give that several nights' trial before making another change, and record your findings. That makes it easier to monitor what is working for you and what is not.

Take it one day at a time, and look for any little positives you can, then acknowledge those successes. You will see that they do add up over time. We all have individual timelines to adapt to the lifestyle change; but we don't know at the beginning just what our own timeline looks like. It's one of those "hindsight=20/20 vision" things. It can also be a "two steps forward, one step back" process as well. If you don't feel like trying the third mask tonight, then don't. But please use your other mask so you can get a night of therapy in. You want to be building a habit of using the equipment every night.

Hang in there; this is all do-able.

Jean


Thanks for the encouragement, it seems it should not be a struggle right now, but this week has been harder than I expected. It wasn't until this week that I've even left the mask off midway through the night, but at 4 1/2 hrs one night, I did. And then at 4:30 Friday morning I just gave up on the whole sleep thing and started my day. Not sure whether it was a "win" that I opted not to go back to bed without the mask, but I knew I was not going back with the mask at that point, and had the appointment with DME Friday morning to troubleshoot.

No, I have not kept a journal as such, not in text form at least. I have the Sleepyhead record as well as Fitbit data most nights. (I continue Fitbit simply because that will give a good comparison of "before/after CPAP" of time awake/restless/asleep, and although I realize it doesn't register AHI or highly accurate sleep data, it was sufficient to finally get my doc's attention on sleep disruption, enough for a referral to sleep doc/study after a 30 second look at the record! "I think you have something going on here. We need to check this out.") It feels like too much clutter to track everything that's going on with the two new specialists I've added this summer, in addition to the two I already had on board for chronic issues. Each area affects the other, so four separate journals would make no sense, and yet the one would be too cluttered, right? Maybe I've just been too tired to deal with it all.

I did try the third mask. Airfit N20. For a first night with the third alien in my home, I think it was okay. Not a perfect fit immediately -- there's "more mask" than I'm used to, since the others were considerably less coverage around the nose, but I did sleep 8 hours with an AHI of less than 2. Can't say I'm feeling well rested at the moment, but at least I slept. I guess it counts for something, and tonight will be night two, right? I wish somehow I could get back to the mask fit of mask 1 -- with the decreased neck issues that I had when I'd swapped it out for mask 2. Maybe with time this one will work. In the meantime, It seems that until I get the mask right, it's pointless to mess with anything else.

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ChicagoGranny
 
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Re: And the journey begins....

Postby ChicagoGranny on Sat Nov 11, 2017 8:48 am

Mittens wrote:I did sleep 8 hours with an AHI of less than 2.

What did the leak line look like?

Mittens wrote: but at least I slept


... and breathed! ... which we weren't doing before!

I've lost track of which masks you have tried. Have you tried a nasal pillow mask?

Mittens
 
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Re: And the journey begins....

Postby Mittens on Sat Nov 11, 2017 9:49 am

Argh... I suppose between all of the changes and some pain issues and life in general, I'm not thinking as clearly as I should this morning, and I forgot to write-protect my SD card when I downloaded data to Sleepyhead, so some data showed up just fine, but the top graph disappeared for last night -- and past nights! I hope those graphs are not gone forever since I'd hoped to talk to my doc about a couple of specific nights and concerns I had. (I'd not sorted out how to post them on here, and wasn't sure about it since I cannot focus on eighteen factors at once anyway.)

I had tried ResMeds pillow mask, I can't recall the name right now, then they had me try DreamWear's mask without the gel pillows, and it seemed that worked much better for the first two weeks as far as the tubing, it did not create the pull on my neck that the first one had. Placement of the hose was far better, but once again there were some neck issues due to how I had to lay in order to prevent shifting and leaks, and long-term they felt that this third would likely be easier to work with in balancing the two competing challenges. If I have to go back to either of the first two, I will do that rather than stop entirely, I suppose -- some treatment is better than none, and I am not really worried about whether I could meet insurance requirements long-term.

(Four hours 70% of the days each month seems a pretty low standard, after all that leaves 9 days a month with no treatment, and 30% of the time on the rest where the body is deprived of the oxygen it needs to function properly. Perhaps adequate for insurance, but I doubt it's adequate for health. Yet, there are other issues many of us deal with too so it is good there's allowance for that.)

Myair says I had 0 major leaks last night, SleepyHead shows one period where peaked around 9.6, probably for 5-10 minutes off and on, and later went up to around a 6 a couple times, as I was waking up this morning.

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Pugsy
 
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Re: And the journey begins....

Postby Pugsy on Sat Nov 11, 2017 10:04 am

Not doing the write protect thing for your SD card isn't the cause of any graphs going absent.

The write protect thing is mainly for the ResMed S9 machines because those machines didn't like the SD cards having a little text file that some Windows and Macs would put on the SD card.
Your AirSense 10 machine doesn't care. I have an AirSense 10 machine and Windows 10 and it puts that little text file on the SD card.
The AirSense 10 and SleepyHead don't care.

As to why a graph disappeared...dunno what happened but it sounds like you may have accidentally turned that graph off.
When in doubt and don't remember you can always create a new user profile in SleepyHead and import from the card to that profile and since nothing has been messed with it should show up just fine.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Backups..AirCurve 10 ST, S9 Adapt, PR S1 Bipap #760

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Arlene1963
 
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Re: And the journey begins....

Postby Arlene1963 on Sat Nov 11, 2017 10:05 am

Mittens wrote: but the top graph disappeared for last night -- and past nights! .


I agree with Pugsy, check to see if the "events flags" in the bottom right hand corner next to "Graphs" is still switched on.

Mittens
 
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Re: And the journey begins....

Postby Mittens on Sat Nov 11, 2017 10:18 am

That was odd. The names of all graphs, the numbers on both axes, and the Events Flags graph at the top had all disappeared. Poof. I closed the program and reopened it with the card out of my laptop, since it was already saved anyhow. It's all back. Thanks!

According to the graphs, last night looks reasonable, one CA, a total of 6 OA's and 2 Hypopneas, not bad for first night on a new mask. Wish I felt rested. I may try to figure out the graph posting thing later this afternoon, but for now am headed out to enjoy some fresh air. Winter is coming, and so I'll enjoy a few hours of nice clear day while I can. :D Thanks again.

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ChicagoGranny
 
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Re: And the journey begins....

Postby ChicagoGranny on Sat Nov 11, 2017 10:27 am

Mittens wrote: Placement of the hose


Maybe this is just grasping at straws, but here is how someone on the forum taught me to manage the hose.

My CPAP is secured to a small, child's chair. The chair is placed next to the bed, and the CPAP is a bit below the level of the top of the mattress. The CPAP is even with my navel, so that the hose runs under the top sheet to my navel. The hose rests from navel up to breastplate and then runs to mask. I usually fall asleep on my back and sometime in the early morning, roll to my side. The hose comes with me, staying about even to the navel and running up to the mask without pulling.

It's just an idea that works for me. YMMV.

Soothest Sleep
 
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Re: And the journey begins....

Postby Soothest Sleep on Sat Nov 11, 2017 6:22 pm

Mittens wrote:No, I have not kept a journal as such, not in text form at least. I have the Sleepyhead record as well as Fitbit data most nights. (I continue Fitbit simply because that will give a good comparison of "before/after CPAP" of time awake/restless/asleep, and although I realize it doesn't register AHI or highly accurate sleep data, it was sufficient to finally get my doc's attention on sleep disruption, enough for a referral to sleep doc/study after a 30 second look at the record! "I think you have something going on here. We need to check this out.") It feels like too much clutter to track everything that's going on with the two new specialists I've added this summer, in addition to the two I already had on board for chronic issues. Each area affects the other, so four separate journals would make no sense, and yet the one would be too cluttered, right? Maybe I've just been too tired to deal with it all.


I mentioned it because sometimes it helps to sort out issues when one has a record of events/feelings/etc. to refer back to, like when one is trying out different solutions to a problem (what settings have I already tried, what did they feel like? what did I do with humidity when the weather changed to x last month/year?). I like having notes all in one place because it is easier for me to flip through to find what I want. But you could try one of those spiral-bound notebooks with multiple sections to manage your four practitioners' recommendations and related info, or use a ring binder with dividers. Or there is a Notes tab on the daily Sleepyhead reports where one can enter text.

It can be overwhelming at the beginning to remember all the details. I'm sure you'll find what works best for you in good time.
Jeam
O soft embalmer of the still midnight,
Shutting, with careful fingers and benign,
Our gloom-pleas'd eyes, embower'd from the light,
Enshaded in forgetfulness divine
-- John Keats

Mittens
 
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Re: And the journey begins....

Postby Mittens on Sun Nov 12, 2017 5:46 pm

I think I've finally figured out imgur -- though struggling with something that went goofy on Sleepyhead. (I can no longer get a response when clicking on File, View, Data, Help, and the options to minimize, resize or close the window have disappeared from the Sleepyhead window. It's now full screen, and I cannot toggle back to normal view. Another day...)

So here's the first evening's Sleepyhead graph when wearing the new mask. I'll just post it with minimal comment for now, see if anything jumps out at a first glance. By the numbers I thought it was a fairly decent start, but was exhausted in the morning. (Last night was totally abnormal but for reasons unrelated to OSA. Sleep quality was much better however.)

Image

Thanks in advance for any insights.

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Pugsy
 
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Re: And the journey begins....

Postby Pugsy on Sun Nov 12, 2017 6:05 pm

There's a bug in SH causing the full screen toggle to not be able to exit. It makes it so big you can't see the menu to close or reduce screen.
If the usual F11 doesn't work then you may need to change your desktop resolution so that you can see the menu and get out of the full screen.
When it happened to me that's the only thing that worked.

Your report looks real good. Any special questions or something that needs clarified?

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Backups..AirCurve 10 ST, S9 Adapt, PR S1 Bipap #760

Mittens
 
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Re: And the journey begins....

Postby Mittens on Sun Nov 12, 2017 6:19 pm

Thanks, Pugsy. That report had confused me, since it looked decent to me as well, yet I felt lousy. I wondered what I've been missing, and have tried figuring it out.

SH bug -- it even persisted when I uninstalled and reinstalled it -- three times! Go figure. I've changed resolution every which way I could, and the only way I could figure out to get out was to click the Windows key, bring up the little bar at the bottom, close Sleepyhead from there. Restart it and go where I need to go. I cannot see any of the File/View/Data/Help menu items whatsoever. If I'm missing something, I'm willing to learn! :) Thanks again for your help!

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Pugsy
 
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Re: And the journey begins....

Postby Pugsy on Sun Nov 12, 2017 6:28 pm

Will address the not feeling the good report later.

The reason the uninstall didn't work is because there's a SleepyHead folder hidden in MyDocuments that is untouched by the uninstall.
If you want to uninstall again and go into MyDocuments and manually remove that special folder so that all traces of SH are gone and then reinstall it should work. At least in theory.

Or change the desktop resolution on your computer...do you know how to do that?

It won't hurt to totally remove SH and then put it back because everything is on your SD card anyway.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Backups..AirCurve 10 ST, S9 Adapt, PR S1 Bipap #760

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Pugsy
 
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Re: And the journey begins....

Postby Pugsy on Sun Nov 12, 2017 6:37 pm

So...good numbers but aren't feeling them. Quite common and while it may simply be that you just need to give it more time there's no reason that you can't do some detective work while you are giving it time.

So some of the usual questions in an effort to troubleshoot.

How many hours of actual sleep are you averaging each night?
Are those hours fragmented with multiple wake ups for some reason or other and if they are...why the wake ups?
Do you take any medications? If so, what?
Any other health issues going on that could impact how you feel?

Specifically what are you feeling that you wish were improved? Is it daytime sleepiness? Fatigue (and it isn't the same as sleepiness)? What specifically did you want improvement in that you aren't seeing?

Answers to those questions will help us troubleshoot why you aren't feeling as good as the numbers might lead you to believe that you should.

And trust me.... I understand completely what it is like to not feel as good as the numbers might point to how I should feel. It's something I have battled for years. Often we expect the cpap to fix a problem that we have but unfortunately the problem isn't related to sleep apnea and the machine can't pull off that miracle no matter how much we want to blame all our problems on the sleep apnea.

It may be that you just need more time...the overnight miracles that you read about are actually in a very small minority. Most of us have found that improvements were gradual and sometimes hard to see. But while giving it time it doesn't hurt to take a look at any other potential culprits.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Backups..AirCurve 10 ST, S9 Adapt, PR S1 Bipap #760

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