seeking feedback and hope

[Sunterior]

I don't know how to tie this post into my previous [2, maybe] posts.

Diagnosis and prescription:
At home sleep study showed Obstructive and Central Sleep Apnea, and low blood oxygen 76.6 for 72 minutes. AHI 25.5 CAI 13.1
In-lab sleep study using CPAP the entire 6hr study showed no OSA, and some CSA in the very last portion of the study. [If they would let me sleep an additional hour till 6am they might have more data]
Rx: Loaner CPAP machine for 11 weeks, then Feb 4, 2020 follow-up Dr. appointment to read results.
I live in Flagstaff, AZ at 7000 ft elevation. The in-lab study indicated that CPAP brought my blood oxygen levels to normal, and supplemental oxygen is not prescribed.

MY EXPERIENCE:
Nov 26 started wearing cpap, for as much as 3 hours in daytime, plus nightly as much as possible. Phillips respironics DreamStation, switching between masks:
DW nasal pillows are evil, lasted 1/2 night. Back to the DME.
Wore the masks below for several hours each during the day and traded masks in the middle of each night, to change face contact points.
ResMed AirTouch F20, after a week of 2 - 4 hrs use each night this mask developed burping air leaks.
DreamWear nasal cushion, has potential.
Did not record machine results during this time.

Dec 1 Started using DreamWear nasal cushion consistently, it is workable.
I recorded hours of nightly mask time and actual sleep time, but did not record machine results during this time.
My sleep was often restless, fidgeting with mask and/or machine.

Dec 4 started recording morning read-out on the machine, in addition to my sleep record.
This record is transcribed into a spreadsheet, which I tried to attach, and to drop into this post. How can I send you a XLSX file?

I'm hoping to at least see a reduction in nightly bathroom visits, which are generally 2 each night, about 2am and 5am. With the mechanics of resettling CPAP with each bathroom visit, they have become quite disruptive. My husband is currently sleeping in the guest room while I "make friends with the CPAP machine". With headgear and machine fidgeting, and bathroom disruption, I don't blame him.

SUCESSES: DreamWear nasal cushion is comfortable and I can't complain, although I still fidget with it.
I added a hose cozy, made my own cozy for DW headgear and nasal cushion [it doesn't seem to leak, and is comfortable]
Wear a buff headwrap to keep my hair tidy, and keep the headgear clean
Installed a hook high on the wall to hang the hose to drain into the machine, and dry out daily
Installed a hook on the headboard to hold the hose above my head
I sleep on my back consistently, my favorite sleeping position. I tried sleeping on my side on a CPAP pillow with cut-outs. The DW mask shifted just enough to create leaks I could hear and feel.

I am becoming discouraged with apparent lack of progress. Despite my best efforts, most nights, I see no improvement in my symptoms. I understand that it can take months to see results, and I have been in the CPAP process for a short time. Is there anything you can tell me at this point that might help me see what needs to be adjusted on the machine, or in my approach to this CPAP process?

I am grateful for the information and support I read on CPAPtalk.com.
Thank you, Bonnie Higgins

[harrywr2]

Sounds like you are experiencing the 'normal' trials and tribulations of adjusting to CPAP.

[Pugsy]

Welcome to the forum.

Please read this.

viewtopic/t172378/Sticky--Newbies-PLEAS ... STING.html

Pay special attention to the information about the available software.

[Julie]

I don't understand when you say 'If they would let me sleep another hour" - are they somehow preventing that or are you misunderstanding terms of payment... i.e. that they want at least 4 hrs/night on the machine for insurance to cover use... I can't believe they're limiting how long you can sleep beyond those hours, just saying you need at least those to qualify. What are your pressure settings?

[Pugsy]

I don't understand when you say 'If they would let me sleep another hour" - are they somehow preventing that or are you misunderstanding terms of payment... i.e. that they want at least 4 hrs/night on the machine for insurance to cover use...

I think she is talking about the in lab sleep study where she didn't get a lot of sleep...they apparently got her up and kicked her out at 5 AM and she was sleeping by that time and means if she could have slept another hour they would have had more data to evaluate.

[Sunterior]

Much gratitude to all who responded. This reply is to pugsy's request to follow forum procedures.
1. I don't know how to put my information into my profile, and I don't see where to access my profile. I included my machine model and headgear model at the start of my post.
I tried the wiki/index link. It won't let me log in with my correct email address.

4. I will try taking a screen shot of my spreadsheet and dropping it into another post.

I don't have access to the respironics data on sd card on this loaner cpap machine.

My offhand comment about 6am was about the in-lab sleep study, wanting another hour, to get more data.

I'm not sure what else you want to know.
Thank you for this forum.

[Julie]

Click on your name upper right hand of window (it's small) and it will bring up your profile page to fill in.

[palerider]

Much gratitude to all who responded. This reply is to pugsy's request to follow forum procedures.
1. I don't know how to put my information into my profile, and I don't see where to access my profile. I included my machine model and headgear model at the start of my post.

https://www.cpaptalk.com/ucp.php?

I don't have access to the respironics data on sd card on this loaner cpap machine.

Why not? you can remove the SD card.

[Sunterior]

Complete response to Pugsy. Thanks for helping me fit into the format.
1. I've updated my profile so my equipment will hopefully show at the bottom of this post. I selected text rather than icony, and my profile shows images. I added Flagstaff AZ 7000 ft. elevation, because high elevation contributes to sleep apnea, and CPAP seems to treat it.
2. I will try to add new posts and response on one of these responses to me.
3. I don't have a SD card reader, and the DME said I would not have access to the data on the loaner machine SD card because it also contained other patient's user data. I have a call in to my sleep dr office to see if I can get any data or information soon, without waiting for my followup appointment in February.
4. I tried pasting a screen shot of my record of sleep, and data from the front of the machine each morning. It would not paste. It's just an xlsx spreadsheet, not a graph.
5.
6. Alright, I'm working on my attitude and other aspects of my sleep quality. It's my project.
7. I will try to remember this if needed.
8. If I have a question or comment about something I find in search, should I bring it back to my thread?

What additional information can I provide that might be helpful?
Thanks

[Pugsy]

Use the attachment feature at the bottom of the text box and just link to that screen shot you took.
Copy and paste won't work but uploading will.

All that crap that you were told about the loaner and you couldn't access the card or information because it contains someone else's data...bull hockey.
They should have erased any prior user data from the machine and the SD card....lazy.
Even I know how to do that and why. Geezz....
Besides...even if you saw it you have no way to know who data it belongs to. They are just blowing smoke.

Does the machine even have a SD card in it?
Do you happen to have an old SD card laying around somewhere...old camera or something?

In the meantime...at least get us the data you do have access to on the machine's LCD screen and we can start there.

Can you tell me what seems to be your biggest problem? Is it mask comfort or sleep or just feeling like crap...and can you explain in detail what is going on.

[Julie]

Yes, please use this thread so we can follow the whole story (they can get long). IF you want to say something else though, like a joke or story completely unrelated to OSA/Cpap, etc... do a new thread with O.T. (off topic) at the start of the topic title.

[Sunterior]

OMG, I am so excited, I have to tell you, members of my apnea support team. Sunday, Monday, and Tuesday I was in despair over slow progress in my cpap process, I could not yet call it therapy. Tuesday I was in tears much of the day, to the point it seemed I had given myself a cold. Well, a sad movie contributed. Tuesday morning I went to my sleep doctor's office and demanded to see someone who could read the data from my cpap machine. They could fit me in at 3pm. Then my husband and went for a lovely hike in the sun.
Physician's assistant at the sleep dr's said that my #s, reports of acid reflux, and other experience indicated I was mouth breathing. I'm not aware of this, but whatever. She gave me a new DreamWear nasal cushion mask that would cover my mouth [but I'm really making friends with my DreamWear nasal cushion. I made a fabric cover that feels good.] I also requested a chin strap to address mouth breathing in another way. I was not a happy camper, and remained tearful for much of the evening.

I took a 1/2 dose of Nyquil at bedtime and again middle of the night to address that approaching head cold, and wore the chin strap [It feels OK] with my beloved DreamWear nasal cushion 7 hours, removing it for the last hour of dosing until the alarm went off. When I got up I felt GOOD, better than any other morning with cpap. Maybe it was Nyquil, or maybe chinstrap, but I'll take it, whatever the source.

For the last 2 months I've been attending Zumba twice a week, stumbling through the familiar movements, most repeated weekly. By 30 min. into the class I was just keeping my feet moving, hoping to match R & L of the leaders steps. Today I was much more able to match most of the leader's detailed steps, and even add some arm movements on easy steps. I was able to keep up with movements through the second half of the class. Also, in past classes a little voice in my head whispered "Why is this so hard for you?" and similar words. Today that little voice said "Look what you are able to do today. This is WORKING!" creating a positive energy cycle. I was ecstatic!

I know there will be ups and downs, but finally having one good day has me feeling very hopeful. And the head cold did not materialize.
Blessings and gratitude to this support forum. We hold each other in a virtual network circle. Yippee!

[Okie bipap]

It sounds like you are getting things under control. Hopefully you will have more good nights than bad nights. We never sleep the same every night, so we all have good and not so good nights. Don't get discouraged when you have one of the not so good nights.

[Sunterior]

Several websites discuss the benefits of controlled mouth breathing. This is a good discussion.
https://www.sleepresolutions.com/blog/c ... -breathing

It seems that full face masks only solve part of the problem. Breathing cpap air through the nose is much more effective than breathing cpap air through mouth.

That makes mouth taping, chin strap and nasal cushion mask a worthwhile system for me to pursue.

And thanks to the fellow that told a story of taping his mother-in-laws mouth shut. We all need a good laugh, especially when dealing with apnea.

[Sunterior]

How do I get new posts to the front or top of the thread? Maybe this will come out at the top.

It's a bit of a dance to move beyond the angst of my first posts. Up, down, forward, back. Recurring stress symptoms again! Overall, life is looking better. Sunshine helps.

I tried taping my mouth, while wearing chin strap last night. Tape stayed put, even while sipping water through a straw to moisten my dry mouth. AHI was high this morning, more of the dance. I remembered seeing a post on this site about higher AHI the first night after mouth taping because the machine can finally read correct data, or something to that effect.

I will continue mouth taping with chin strap and see if it reduces dry mouth, bathroom visits, and/or AHI.
I'm trying to attach a screenshot of my sleep journal and morning data readout. I hope it attaches this time.