1st Week CPAP Use Thoughts/Concerns/Questions

Hey Yall,

I posted once with some of this info before but I wanted to start a weekly-ish check in for my CPAP therapy to discuss my thoughts, concerns, and questions in hopes others maybe have some insight or help others with different things.

Found out I have Moderate OSA a few months ago, and I received my CPAP machine last week which is the Resvent iBreeze CPAP/APAP machine. I know that my machine is not supported by Oscar, however I know it is supported by another program(iMatrix) so I should look into getting an SD card reader in regards to getting access to my information for better insight to share with yall.

I am using the APAP feature of the machine(recommended by sleep doctor) with a 4-20 cmH2O.

That being said, I have used the mask provided to me, which is a nasal cushion by Phillips Respironics with associated headgear. I did not try any other masks before hand, or anything after receiving my diagnosis it was just the mask sent to me with my machine after my study. So I truly have no idea if another mask works better or worse for me...

After using the machine for one week, I can say that I overall feel a bit better throughout the day but I still don't truly feel like there has been a crazy DRASTIC change in my energy like I was hoping would happen. I am still waking up throughout the night, however in general I feel like maybe not as much? With the exception of last night which I felt was like every hour... Sort of expected to start feeling like WAY better and be ready to run a marathon. Which again, I do think I feel a bit better but... maybe not as much as I'd like.

My machine provides very basic data every night, showing average AHI/mask fit/humidity. Since using it(minus the first night) my machine has been recording an average AHI of 1/hr. Now, I feel like that's pretty good but I just wonder if there IS a leak, or I am mouth breathing during the night if that would make it worse or affect it in any way. I would assume my machine wouldn't be recording such a good AHI if there were leaks/issues with the mask. Every night my mask fit rating has been 3/3 "stars" along with the humidity so. I also feel like if there was a leak or something wasn't working properly that those ratings would also change. Making me think that... the machine is doing its job for the most part(without going into the serious data).

Anyways.. just wanted to get yalls thoughts/opinions as I move forward in this journey. Thanks for reading... and i'll be checking in soon!

KEEPER4560 wrote: ↑

Thu Mar 31, 2022 6:26 am

I am still waking up throughout the night, however in general I feel like maybe not as much? With the exception of last night which I felt was like every hour... Sort of expected to start feeling like WAY better and be ready to run a marathon. Which again, I do think I feel a bit better but... maybe not as much as I'd like.

Ah...we wanted a miracle life altering change after one week on cpap. Is that about it?
Don't feel bad...that's what everyone expects and wants but only a very small number might have that miracle.
The few people who are lucky ....they are in a very small minority but they sure make the rest of us feel like we must be doing something wrong or have something lacking because we didn't have the "overnight miracle".

Let me share some cold hard facts of life with you...and I don't really want to rain on your parade but the cold hard fact of life is most people don't/won't see that life altering change. I have been on cpap coming on 13 years in May and a long time ago I realized that I wasn't waking up just rearing to go run that marathon (and yes, I expected to) despite really good "numbers" from my cpap machine reports.
The fact of life is that there is so much more to getting good restorative sleep than just numbers. I wish it were that easy because getting good numbers is the easy part...now feeling the good numbers is the hard part.

1....You admit to waking frequently during the night and some nights more than other nights. That alone can disrupt the sleep cycle so that we don't get the needed amount of sleep in each sleep stage and/or the nice normal progression of each sleep stage so that the restorative powers of sleep can work their magic.

2....It's only been a week. There is some truth to the give it time thing because our bodies didn't get in this shape overnight and it's really an unrealistic expectation to expect cpap to fix things overnight or over a week or over a month.
How long did you have untreated sleep apnea doing damage to your body?

3....Do you take any medications of any kind? Even OTC? Medication side effects are a common problem for most of us.
They mess with how we sleep and how we feel yet we have to take them because they help us with other health problems.

4...Any other health issues going on...physical or mental??? Any pain or comfort issues?

5...I have no idea if the software that your machine offers will shed any light on anything or not but don't you think that maybe it might be worth the cost of a card reader (they are cheap) so you can at least look and see if maybe there is a hint of something in there that might point to something that might help you sort out problems?

The frequent wake ups are a problem. While it is normal to wake up after REM stage is done with most of the time we don't remember the wake up. We just roll over and go back to sleep.
When we remember wake ups (no matter what the cause) then you can pretty much be certain that there were more wake ups that you don't remember.
We don't remember wake ups unless we are awake for a small period of time to form a memory of the wake up.

Not all our wake ups are from airway issues and yet we expect cpap to stop ALL wake ups and cpap just can't do anything about any wake ups that aren't related to airway issues. There's this thing called bad sleep and cpap machines can't fix bad sleep when it isn't caused by airway issues i.e. apnea issues.
Lots of causes for bad sleep not related to airway issues. Figuring out the cause is difficult and then even when we know the cause it isn't always so easy to fix.

I personally think that bad sleep from other than apnea causes and people's expectation that cpap will fix EVERYTHING is the primary reason people bail on cpap use because "it didn't help me feel better". People had unrealistic expectations of what the cpap machine can do.

So what to do???
1...we give it time because maybe time is all that is needed and it's not like we have a choice if we want to stand any chance in hell of ever feeling better.
2...while "giving it time" we do some detective work to try to figure out what else might be going on and how to fix it.
We look at the data to see if anything stands out. We evaluate other causes for sleep problems. We don't sit around with our fingers up our butt waiting for the machine to perform a miracle when maybe the machine just can't fix the problem.

And we also start looking for the things the machine did fix instead of looking at what it didn't fix.
Change of attitudes and expectations is in order.

I also expected cpap to make me wake up and feel like running a marathon...but it didn't happen. I have other issues going on that would prevent me from waking up with the energy to run a marathon but I did have to admit that with cpap I at least didn't wake up feeling like I had just run that marathon and got run over by a bus at the end of it.

You probably have some poor sleep quality issues going on that is playing a big factor in how you feel.
Sleep quality problems that are most likely unrelated to airway issues so the machine can't fix those issues.
Waking often during the night is called sleep maintenance insomnia. The list of culprits is probably a mile long and sleep apnea is but one item on that mile long list.
Figuring out the cause won't be easy and even if you can figure out the cause it might not be so easy to fix anyway.
Doesn't mean we don't investigate though. We don't ever give up.

Pugsy wrote: ↑

Thu Mar 31, 2022 7:22 am

KEEPER4560 wrote: ↑

Thu Mar 31, 2022 6:26 am

I am still waking up throughout the night, however in general I feel like maybe not as much? With the exception of last night which I felt was like every hour... Sort of expected to start feeling like WAY better and be ready to run a marathon. Which again, I do think I feel a bit better but... maybe not as much as I'd like.

Ah...we wanted a miracle life altering change after one week on cpap. Is that about it?
Don't feel bad...that's what everyone expects and wants but only a very small number might have that miracle.
The few people who are lucky ....they are in a very small minority but they sure make the rest of us feel like we must be doing something wrong or have something lacking because we didn't have the "overnight miracle".

Let me share some cold hard facts of life with you...and I don't really want to rain on your parade but the cold hard fact of life is most people don't/won't see that life altering change. I have been on cpap coming on 13 years in May and a long time ago I realized that I wasn't waking up just rearing to go run that marathon (and yes, I expected to) despite really good "numbers" from my cpap machine reports.
The fact of life is that there is so much more to getting good restorative sleep than just numbers. I wish it were that easy because getting good numbers is the easy part...now feeling the good numbers is the hard part.

You are spot on with all of this. I suppose I was a bit naive to expect to see a miracle from this and to be fair I should have known. I did a lot of research/talked to other people I know personally and they didn't ever experience this.

To some of your points...

2...I know for a fact that giving it time helps for sure. I also know that I have snored/had bad sleep or so I felt for quite some time. So, the damage sleep apnea could have done has easily been 5+ years...

3....I do take medication. Only for high blood pressure, however I have not noticed that has played a part in making my sleep any worse.

4....I have some mental stress with work/family health issues that I am sure are all subconsciously playing a part in poor(er) sleeping.

5...I have youtube'd the iMatrix software and people using it. I don't believe it is as user friendly or as detailed as OSCAR but it does appear to shed some information. So, I do plan on buying a SD card reader after a weekend getaway down to NW Arkansas... and hopefully get some data to share with yall so I can see with detail what is happening.

Your words have definitely helped and put a lot into perspective. I know things like these take time and, also a lot of trial/error/research. I can see why many people might throw in the towel when using it after a week and it not completely changing their life because they expected it to. I, however, will not give up or plan to stop using it. I will continue to do research, and also continue to be on here and ask for help from the amazing people in this forum! I just want to make sure my machine is working first and foremost. For my health and my well-being.

Thanks for your reply :]

KEEPER4560 wrote: ↑

Thu Mar 31, 2022 7:56 am

weekend getaway down to NW Arkansas

Where are you located?

Oh BTW....don't totally discount the effects of your blood pressure meds on how you feel and sleep. Most of them are well known to impact sleep quality as well as how you feel during the day. It may not be all your problem but it can certainly play a part. I found that out by doing some research on my on BP meds.
https://www.goodrx.com/drugs/side-effec ... g-insomnia
https://www.aarp.org/health/drugs-suppl ... omnia.html

And a bit of a story...my own sister was having extreme fatigue and on BP meds.
We did a screening using my cpap machine to see if there was a chance of sleep apnea with her symptoms but I couldn't really put the blame on apnea from what I saw so she finally asked her doctor to change her BP meds to something else and she did and immediately saw a marked improvement in her daytime energy levels. It can be (at least in part) a medication side effect thing. I am also on BP meds and I know that one of the side effects is fatigue and sleep quality issues but I also have poor sleep from pain issues so I never really could put all the blame on just medication side effects. I always felt the pain was the biggest sleep quality potential culprit and I recently think I have proof as well as a solution. More on that in a few days once I determine if what I have done (had a bit of surgery explained elsewhere) actually holds in terms of relief.
I don't want to jinx myself but last 5 or 6 days I have been sleeping much better AND I can tell a marked difference in how I feel during the day.....so far.

Oh, the reason I asked where you live is because I might not be far from you and if push comes to shove and you are really close to me and you can't get helpful data from your current machine then maybe I could loan you my spare just to get good data to evaluate deeply.

Pugsy wrote: ↑

Thu Mar 31, 2022 8:20 am

Oh, the reason I asked where you live is because I might not be far from you and if push comes to shove and you are really close to me and you can't get helpful data from your current machine then maybe I could loan you my spare just to get good data to evaluate deeply.

In regards to the BP meds...I do know BP meds can affect sleep... I guess I just have not noticed any change in being able to sleep(sleep apnea came about actually because of the high blood pressure issues...since I am only 28 and medications were helping but not as much as the Doc thought). However you are right. They could be affecting my sleep and me not even noticing it. I HAVE noticed I am able to fall asleep quicker using my cpap machine/haven't had issues falling asleep the last week. Which... is kind of strange for me. I usually struggle at least once a week or so.

I live in the Kansas City Metro area...(Kansas side)!

It takes very little of anything to disrupt our sleep quality and/or cause fatigue during the day. Even low level side effects can make a big difference in how we sleep.
Read my new thread about the SCS thing. I am actually sleeping somewhat better. Still room for improvement though.
Like most women I am not ever totally satisfied with anything but I don't give up.

You have been on cpap 1 week....still much further ahead than I was when I started. It took me at least 3 months to get my brain to quit waking me up just to tell me that "do you know you have an alien stuck to your face blowing air up your nose"...kind of wake up.

So maybe that is all it is with you....the brain/body simply getting used to the new way of doing things. Let's hope that is all it is but you have to take a chill pill and I know from personal experience how big and how difficult it is to take a "patience pill". Give yourself some time for the body and mind to heal....but that doesn't mean you stop looking or investigating other potential issues. Target the good stuff more...not the bad stuff like not feeling like running a marathon yet.
Be glad you don't feel like you ran that marathon and got run over by a bus as the end of it.

The mind is the most powerful drug we have....sometimes it's a good friend to us but sometimes it's our own worst enemy like when we let life's stressors mess with our sleep. We can't always shut the brain off but we need to.
I know that problem well myself because my soon to be 90 yr old mom is a huge life stressor for me. Seems like all her problems I try to fix in my head once in bed and trying to sleep. I keep telling my brain/mind to STFU but it won't listen to me.

KC area ....
Will keep the loan of my machine on the back burner for now depending on how things go with you and your machine as well the give it time thing.
We aren't real close. I am about an hour east of Joplin but a loan could probably be arranged somehow.
I got a brand new grand niece in the OP area that I need to see sometime in the future. From the pictures...a real beauty and my sister's only grandchild (and likely one and only)...so maybe a trip in my future as well.

Definitely hard to take a patience pill and try and let the process run naturally. I will continue to work to finding the best info/advice possible while also letting myself get used to it too. The mind certainly is a powerful thing but... I appreciate you taking the time to share your wisdom and experience! Makes me feel better!

Congrats on the grand niece! I live in the OP area so, if you ever find yourself this way and are looking for a bite/cup of coffee let me know! Would be great to chat and hear some more of your experiences.

Yeah those patience pills are rough. They are huge, taste terrible and covered in barbs.
Don't have much choice though so grin and bear it. Keep telling yourself that a week is such a short time to really expect much of anything. Even a month is considered a short time.
If you broke your arm and got it put in a cast....could you really expect it to be fixed before it had a chance to heal????
That's what we are doing when we expect the overnight miracles with cpap....assuming the therapy is even optimally dialed in.

And yes, the grand niece is a blessing. Her mom got covid in January and ended up in the hospital for several days due to pneumonia....and the baby came in mid Feb and also had oxygen issues so had to be in NICU for a week but she's doing great now. We were all on pins and needles in Jan and until the baby got home.
My sister is still on cloud 9. She always wanted a girl and got 2 boys. Now she has a granddaughter to spoil.

If you can safely take one of those OTC sleep aids...might consider it just to see if it helps the sleep quality a bit.
Doesn't have to be long term. Just short term to help fool the brain into not seeing the mask/machine as an alien that it has to warn you about (if that is part of your wake up issue).

Pugsy wrote: ↑

Thu Mar 31, 2022 10:00 am

Yeah those patience pills are rough. They are huge, taste terrible and covered in barbs.
Don't have much choice though so grin and bear it. Keep telling yourself that a week is such a short time to really expect much of anything. Even a month is considered a short time.
If you broke your arm and got it put in a cast....could you really expect it to be fixed before it had a chance to heal????
That's what we are doing when we expect the overnight miracles with cpap....assuming the therapy is even optimally dialed in.

And yes, the grand niece is a blessing. Her mom got covid in January and ended up in the hospital for several days due to pneumonia....and the baby came in mid Feb and also had oxygen issues so had to be in NICU for a week but she's doing great now. We were all on pins and needles in Jan and until the baby got home.
My sister is still on cloud 9. She always wanted a girl and got 2 boys. Now she has a granddaughter to spoil.

If you can safely take one of those OTC sleep aids...might consider it just to see if it helps the sleep quality a bit.
Doesn't have to be long term. Just short term to help fool the brain into not seeing the mask/machine as an alien that it has to warn you about (if that is part of your wake up issue).

Glad to hear both her mother and her baby recovered alright. How exciting that your sister has a granddaughter to spoil. Grandparents sure know how to treat us,,,

Just realized... it has only been 6 days instead of a full week. Tonight will be a full week... oh do I have a long way to go...

Just wanted to share an update here...

For the last month I have been using my CPAP machine. First week or so... I felt like I was waking up feeling pretty good. About a few weeks or so ago... it felt as if I was waking up just as tired as not using it... despite my AHI showing pretty good numbers. I have been using a DreamWear Nasal CPAP mask, which I thought was working. However later on it was giving me a sore under my nose... and... I was not feeling like it was doing its job properly.

My machine was giving me some info, however it is not supported by OSCAR so I am only going off what my machine data is telling me(after putting it in doctor mode). My average 95% pressure was around 9 each night... AHI was good(usually less than 1)... my SNI was all over the place thought. Averaging about 9-10.

Last night I have tried the ResMed Airfit F20 full face mask... and I feel like it did a lot better job. While, of course, it came with its own issue(a little bit sore on my right cheek) I noticed that I did not wake up nearly as much(only once). My AHI was still showing the same... .7 for the night. However I noticed my SNI was .5 as opposed to 9-10. Which makes me wonder if I was breathing through my mouth at night as opposed to breathing through my nose the whole time. I ended up even falling asleep talking to somebody on the phone and they said they never heard me snore. I also noticed my average 95% pressure with the full face mask was about 13... as opposed to 9. So, also wondering IF I have needed added pressure this whole time as opposed to what the nasal mask was providing. Again, just going off of the data from my machine(I still need an SD card reader).

I can also say that I feel much better today after only 6 hours of sleep and a few adult beverages than I have the past few nights with my nasal mask getting 8-9 without any alcohol. So, I am excited and curious to see if maybe this was the switch I needed.

Cheers!

Alex

PS - the 90% pressure is for anything UP to it, not fixed at 90.

Julie wrote: ↑

Fri Apr 22, 2022 12:26 pm

PS - the 90% pressure is for anything UP to it, not fixed at 90.

Exactly! I just thought it was interesting that more pressure was needed to be delivered with a full face mask vs just the nose cushion. Sort of just makes me think I have needed more from the start.