And the journey begins....

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

Post by ChicagoGranny » Sat Oct 14, 2017 9:49 am

Mittens1 wrote:(Not sure if it's best to continue the thread or post a new one -- hope this is okay.)
You did it right. We can follow the history of the discussion. The worst is new members who spew new threads all over - ughhh - it's A Mess.

Mittens1 wrote:First two nights on APAP are complete, and both had less than 3 events per hour.
Congratulations!
Mittens1 wrote:First, if prior to diagnosis, our bodies were used to adrenalin kicking in multiple times during the night, what does it do to have a sudden change? How can we best support our bodies during that transition?
When the nightly hormone disaster is gone, the body immediately begins to heal. How to support the body? Just the basic stuff - good nutrition, moderate exercise, time spent outdoors, sufficient sleep time and continue to work on sleep quality.
Mittens1 wrote:Any suggestions for dealing with that pull? Is it likely the weight/resistance of the mask?
Yes, managing the hose is part of the CPAP learning curve. Here is something I often post -->
- Make sure to use good hose management - the hose should not pull on the mask. Notice how your hose is positioned between machine and mask. It should be positioned to minimize any pull on the mask. Hose management is an individual practice. How it is done depends on the mask, the position of the machine, your sleeping position and other factors specific to the individual.
Are you using a standard hose or slimline? ( https://www.cpap.com/cpap-hose/cpap-hose-tubing.php ) The slimline is lighter and will pull less.

I try to use hose management systems as a last resort. They are an added complication, and what do you do when you travel? Something else to carry in the luggage and figure out how to set up in your hotel or guest room.Something else for TSA to see on the x-ray.

If you think you need to use a hose management system, maybe you can "wean" yourself off after you become more skilled and at ease with the CPAP process.
Mittens1 wrote:neck pain due to existing cervical issues
If you get the hose management solved, and this continues to be a problem, we can discuss foam cervical collars. A good many of us (without cervical problems) wear them to improve our CPAP therapy. They hold the neck in the best position for airway patency and help prevent jaw drop/mouth opening.

It's good to have discussions with a newbie who solves problems logically and is on the way to success. Thank you.

Mittens1

Re: And the journey begins....

Post by Mittens1 » Sat Oct 14, 2017 11:42 am

Johnny, best wishes as you too begin this journey. I love your attitude. I haven't yet named the machine, but you did make me think. I'm gonna have to make friends with this mask, so I think I'll need to give it a name, at least.

ChicagoGranny, thank you for your input. I had been thinking this morning, wondering if it was as simple as "back to basics" of good nutrition, allowing time for enough sleep (or a little extra,even), etc. I had wondered also if this is a time to not overdo on the exercise -- yes, exercise, but only moderate levels for a few weeks, at least till I touch base with the doc.

The hose -- yes, it's a slimline. This morning was the first time I didn't wake up with my neck in agony before noon. It's not happy now, but at least I've had a few hours relief so maybe it's adjusting. All I know is that I have to do everything possible to make this work, because what was happening is not sustainable. I was struggling in multiple areas, and it seems the underlying theme is likely tied to poor quality sleep. It would be lovely if things that I thought were relatively random end up resolved.

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ChicagoGranny
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Re: And the journey begins....

Post by ChicagoGranny » Sat Oct 14, 2017 12:10 pm

Mittens1 wrote:This morning was the first time I didn't wake up with my neck in agony before noon. It's not happy now, but at least I've had a few hours relief so maybe it's adjusting.
It could be that the normal tension/worry of the first few nights of CPAP was causing some neck problems. As you become more relaxed with the process, hopefully you will have fewer problems.

I awakened this morning at 4:30 with some pretty bad "elder pain". Usually, I can't fall back to sleep. This morning I fell back on a basic - just lying still, listening to the gentle noise of the CPAP and imagining the gentle pressure was protective and pleasurable. Maybe it worked - I fell back to sleep and slept late (for me).

Mittens1 wrote:I had wondered also if this is a time to not overdo on the exercise
The Captain Obvious comment is, "Never overdo exercise." That's easier said than done for someone like my Gramps.
Mittens1 wrote:I was struggling in multiple areas, and it seems the underlying theme is likely tied to poor quality sleep.
Our untreated days seem to be the time to be careful about exercise. The body is already under great stress. My gut feeling says an exercise-induced heart attack is more likely. (I'm influenced by Dr. James O'Keefe's work - https://www.runnersworld.com/health/exc ... heir-views )

BTW, you mentioned a lot of awakenings the first two nights. How was it last night?

Mittens1

Re: And the journey begins....

Post by Mittens1 » Sat Oct 14, 2017 7:09 pm

ChicagoGranny, waking up in the night right now is the norm. Had the crazy upper respiratory virus that's gone around this year, and it settled into my chest. The cough takes a while to leave, they said -- and they certainly hit the mark on that one! Toss in pain issues and the normal "alien on the face" newness factor, and I'll be shocked if I were able to sleep straight through the night without waking up more than once any night within the next week. If it happens within the next two weeks, I will be pleased, but that's what I'm hoping for.

Mittens1

Re: And the journey begins....

Post by Mittens1 » Thu Oct 19, 2017 6:43 pm

Trying a different mask, although I liked the results with the first mask as far as apnea goes. AHI under 2, leaks were low for the first few days, but pain levels and headaches were a problem. It seems worth a try to swap masks during this first month, to see whether that will make a difference. I want this to work, without complicating other health issues if at all possible.

I tried the Dreamwear mask this afternoon for a nap, and noticed that the same pressures I have been using feel like I'm getting less air than it did with the previous mask. (AirFit P10). It'll be interesting to see if pressures required overnight the next 2-3 nights differ from the past few nights. Is that my imagination or does the style mask make that big a difference?

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ChicagoGranny
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Re: And the journey begins....

Post by ChicagoGranny » Fri Oct 20, 2017 6:31 am

Mittens1 wrote:I tried the Dreamwear mask this afternoon for a nap, and noticed that the same pressures I have been using feel like I'm getting less air than it did with the previous mask. (AirFit P10).
What are your pressure settings?

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RicaLynn
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Re: And the journey begins....

Post by RicaLynn » Fri Oct 20, 2017 7:52 am

I know the S9 has different settings for different mask types, I would think the AirSense does as well. I seem to dimly recall the DreamWear requiring a different setting? Just thinking out loud...

_________________
Machine: S9 AutoSet™ CPAP Machine
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Backup/travel unit is an identical S9 AutoSet for Her w/Eson nasal mask

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Pugsy
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Re: And the journey begins....

Post by Pugsy » Fri Oct 20, 2017 7:58 am

RicaLynn wrote:I know the S9 has different settings for different mask types, I would think the AirSense does as well. I seem to dimly recall the DreamWear requiring a different setting? Just thinking out loud...
The different settings for the masks with the ResMed machines don't normally make any difference on how the machine delivers the pressure or how it is perceived or felt. It's used mainly for leak calculations (per ResMed) and maybe some minor adjustments that we don't know about in terms of resistance.

No matter what it shouldn't make any difference as to the setting for mask.
I have used the DreamWear and playing with mask selection...nasal vs pillows and with my ResMed machine I couldn't tell any difference at all in pressure needs during the night or how it felt at the beginning of the night....or any difference in leak numbers either.

Now different masks can cause the user to perceive or feel like there is a difference in air flow and equate it to pressure but that's not necessarily what is really happening.
I may have to RISE but I refuse to SHINE.

Mittens1

Re: And the journey begins....

Post by Mittens1 » Fri Oct 20, 2017 11:45 am

Pressure settings are at 7-12. Last night was tough, although the pressures have felt fine before, it just feels like I was not getting enough air since swapping out the masks. Neck is happier, though. I'll see how tonight goes I suppose.

Mittens1

Re: And the journey begins....

Post by Mittens1 » Sun Oct 22, 2017 4:22 pm

I'm beginning to wonder how long it generally takes till registrations are processed. Given the tone of some discussions and how far afield a thread can go, I have hesitated at times whether to post specific questions that have come up this past week. Just wondering.

Mittens
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Re: And the journey begins....

Post by Mittens » Sun Oct 29, 2017 6:20 pm

Yeah! The registration went through. I'd been watching for an email since initial registration said that an email would be sent when registration was approved, but today I just tried to sign in and it worked, even though I've never received an email (and yes, I'd been checking spam and junk mail folders). Anyhow, it's good to no longer wait. (Maybe the email will come tomorrow?)

Although the change of mask helped at first, it seems I've got a balancing act before me -- sleep apnea vs neck pain, helping one means compromising the other. Aim for "good enough" with both, and hope to balance life somewhere near that point, at least for now. I'm really not sure what else to do.

Edit: The email came just after I'd written this!

Mittens
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Re: And the journey begins....

Post by Mittens » Fri Nov 10, 2017 6:45 pm

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.)

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

Post by Soothest Sleep » 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....

Post by Arlene1963 » 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....

Post by Mittens » 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.