When you don't always feel those "good" numbers

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Pugsy
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When you don't always feel those "good" numbers

Post by Pugsy » Thu Aug 31, 2017 9:41 am

I decided to make this a separate thread to offer my experiences recently since we often see people with good numbers but not feeling them at all or not as much as they expected or wanted.

I have been on cpap for over 8 years now and pretty much have my OSA very well managed. It's rare that I don't get "good numbers" on the software reports. Yeah, sometimes my leak graphs aren't the prettiest but since I sleep through them and it's rare that they are so bad that they can seriously impact cpap therapy...I shrug my shoulders and move on. I long ago discovered that going to extra ordinary measures to tame the leak line resulted in much poorer sleep quality/quantity and for me sleep quality is a HUGE factor in how I feel in general.

You gotta get the sleep first and doing something that causes a lot of wake ups sometimes makes it so that the cure is worse than the disease.

So anyway...many of you know that I often mention "other issues that mess with my sleep quality/quantity" so I am going to go into more detail about that little bit of information.
My other issues are pain...long story there but it is pretty much good old arthritis rearing its ugly head.
I have tried for years to improve the sleep quality/quantity situation and made some improvements along the way but never really felt like it was "good enough" and I wanted better. With various medication experiments I managed to reduce the wake ups due to pain from 30 to 50 to 10 to 20. And improvement but far from desired. I figured if I remember a sizable number of wake ups/arousals then there's a good chance that I had even more that I don't remember.

To complicate things...my daytime pain meds cause insomnia despite coming with a "may cause drowsiness" sticker. It's a well known side effect for that medication. Maybe not as much as drowsiness but it happens in a small percentage of people and I drew that short straw.

So I can't stay in any one position very long...it just hurts...laying on my back actually hurts worse but I have to move around when I sleep..so it's not like if I stayed on my side that I wouldn't hurt. I would wake often just from the pain and have to change position. Sometimes it was so bad that it was all I could do to muster up enough effort to turn over to some other position.

Things the last few months have gotten a LOT worse in terms of the arthritis pain in general. Even hard core narcotics didn't really help all that much and they aren't good to take anyway for any number of reasons.
So to try to shorten the story I finally decided to try something that might help...cortisone injections in one of the areas where my arthritis is really bad and causing the greatest amount of sleep disruption and pain...the SI joints. My entire lumber spine is totally screwed up and not much I can do about that but it isn't where my greatest issues are anyway. It's the SI joints. Many years ago I was in a really bad car accident...I am lucky to be alive and walking. Unfortunately the amount of trauma to the back and pelvis meant that the chance of arthritis coming for a long term visit was very high. The pelvis was essentially crushed and dislocated and I broke my back along with many other broken bones and internal injuries. I still have dislocations in the pelvis and non union fractures. So my back and pelvis is f.....d up.

This past Monday I had my first set of cortisone injections in the SI joints. Another set is schedule for 3 weeks from now.
I can already see a huge improvement not only in daytime pain relief but in sleep quality as well.
The quantity part of the sleep isn't yet where I want it to be but cortisone is also known to mess with sleep a bit. Plus I have some issues with an old dog that end up meaning less sleep than I want. It is what it is.

Night before last I got less than 6 hours of sleep but it wasn't fragmented like my sleep normally is. I maybe woke up twice which for me is a HUGE improvement and more importantly I didn't feel nearly so bad yesterday from the short hours of sleep. Normally with less than 6 hours of sleep I am a total zombie. Actually I felt quite decent yesterday which surprised the heck out of me.

Having less pain at night...means less wake ups due to pain...means better sleep quality even if the quantity isn't ideal.
We have to have good sleep quality to have any chance of feeling those good numbers we see on the software reports.
Unfortunately sleep apnea isn't the only cause of poor sleep quality and numerous wake ups. In my case it was the pain that was the major culprit. It could have been from any number of culprits though and that's why we have to be prepared to dig deeper when we don't feel as good as the numbers say we should expect to feel.

Now remember...it's normal to have an occasional remembered wake up...like at the end of a REM cycle. Most of the time we don't remember them because they are so brief but sometimes we do. To actually go to sleep and not wake up (or remember waking up) until morning isn't normal. I know it is what people expect and want but it simply isn't a goal that is realistic.

What I am talking about is numerous wake ups that exceed "normal" wake ups. Sleep maintenance insomnia...where we don't usually have trouble falling asleep but we have trouble staying asleep and/or getting back to sleep in a timely fashion.
Any wake up messes with the normal sleep architecture a bit...can't get back into the nice normal progression of the sleep cycles so that we get the needed % of each sleep stage which is needed for the restorative powers of sleep to work their magic. Have too many of those wake ups and the sleep quality is in the toilet even if the sleep quantity (hours asleep) total an acceptable amount.
8 hours of crappy sleep is going to leave someone feeling crappy. A nice low AHI doesn't guarantee that a person won't have crappy sleep quality. Wish it were that easy because getting a nice low AHI is really fairly easy.

There's a long list of stuff that cause sleep maintenance insomnia or mess with sleep quality in general...OSA is just one of many on that long list. CPAP machines can only fix sleep apnea related issues...they don't fix other stuff. The best cpap therapy in the world didn't do a damn thing for my arthritis pain. I would have the exact same issues even without OSA diagnosis being thrown in the mix.

My point to this novel...if you aren't feeling the good numbers and you are new to cpap therapy...you may need to just give it time because there is a lot of truth in the "give it time" thing but you might as well use that time (like you have any choice) to do some investigating to see if there is anything else going on in your life that could be a factor in feeling like crap or crappy sleep in general.
Did deep...don't leave any stone unturned...take a hard look at everything from sleep hygiene to medications to bed comfort to comfort in general and any other health issues that might also play a part in how you sleep and/or feel in general.
Not everything wrong with us is fixable with cpap...no matter how much we might want it to be...it's simply a cold hard fact of life.

My sleep hygiene sucks...no way around it but I deal with it. Between the old dog needing one last pee break really late so she doesn't pee in the floor and my own bad habits...it is what it is.

The good news is ......at least I now have one part of my puzzle better addressed...the pain issue...while not perfect (nothing ever is) the improvement so far is remarkable and if it doesn't get any better than this...I am still a happy camper. Any improvement at this point is a godsend and very much appreciated.

And now that I officially don't have to take it easy after the injections I plan to do some long overdue work around here since I now actually feel the energy to do it.
Chronic pain is fatiguing...even if it isn't level 10 pain...it just plain wears a person out and they don't feel like doing anything.

Getting good numbers...that's the easy part...feeling them is a whole different story.

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Re: When you don't always feel those "good" numbers

Post by Bertha de Blues » Thu Aug 31, 2017 9:52 am

Pugsy, thank you so much for sharing your experiences. A very worthwhile read.
Please give your old dog a scratch behind the ear for me.

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Re: When you don't always feel those "good" numbers

Post by RomeinDNVR » Thu Aug 31, 2017 10:10 am

Pugsy --

Wow, a very long journey for you thus far. I hope the cortisone shots continue to work for you and help to solve that one piece of your sleep puzzle. I have had 3 back surgeries in the last 5 years, the last was a fusion of my L5-S1 vertebrae... I am VERY lucky that I have had 0 pain since I have recovered from the final surgery.

Coming from a place of experience of chronic extreme back pain I truly sympathize with your situation and I hope you find long term lasting relief.

Old Dogs are always the best, and most accepted reason for interrupted sleep =)

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Re: When you don't always feel those "good" numbers

Post by Pugsy » Thu Aug 31, 2017 10:22 am

RomeinDNVR wrote:Old Dogs are always the best, and most accepted reason for interrupted sleep =)
Yep... I just accept it as part of life and might as well since I can't really do anything about it.
I can't bring myself to make her stay outside all night. A bit stupid probably (or some people might think) but it is the way I am about my furry friends. It's just part of me and I can't change who I am nor do I really want to.

Glad your surgery helped you. There's a part of me that wishes surgery could fix my other spine issues but I don't think that is a realistic expectation so I don't go there in my thoughts very often. Besides...that stuff I can deal with for the most part especially if I have the major offender beaten down a bit. Major offender being the pelvis/SI stuff.

It's all a big puzzle and we need all the pieces to fit to get the whole picture to show up. Sometimes finding the missing pieces takes a lot of looking though....they aren't all in the cpap report as much as we want to look there for all the answers to all our problems.

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Re: When you don't always feel those "good" numbers

Post by MaxINTJ » Thu Aug 31, 2017 10:23 am

Ummm.... what if you can't even get good numbers?

O.o

For me, I already wasted time CBT-I (a month) and my sleep hygiene is very good. I fall asleep easily and if I wake up in the night, again, I fall asleep easily - on my stomach.

My lumbar issue is typically not an issue unless I over do it during the day or I'm in bed too long after the Flexeril wears off.

Overall, the only pain I have is now from the neck injury which is very recent, and I know it interferes with my sleep.

I have dug deep, and I did before I saw a doctor (I hate going to the doctor, always have), so I'm quickly running out of options.

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Re: When you don't always feel those "good" numbers

Post by Pugsy » Thu Aug 31, 2017 10:37 am

MaxINTJ wrote:Ummm.... what if you can't even get good numbers?
Numbers are meaningless in your situation....cpap numbers are OSA numbers and not UARS numbers if (Big IF) you even have UARS.
CPAP machines can't really measure and report much of anything that relates to UARS therapy effectiveness.
Some maybe (big maybe) loose correlations between RERAs and Flow Limitations...but very loose at the best.
With cpap use and UARS therapy...it's all subjective and that's really hard to measure. We all like numbers for measuring stuff but with UARS the numbers we have from the cpap machines aren't really much help. It sucks but that's just the cold hard facts of life.
MaxINTJ wrote:I have dug deep, and I did before I saw a doctor (I hate going to the doctor, always have), so I'm quickly running out of options.
You have a choice....continue to try to find somewhere to dig or give up.

Your crappy sleep is worse later in the night...maybe because the effects of the Flexeril have worn off.
The fact that you need to take Flexeril at night before bed to get some sleep ...points to the back being more of a problem than you want to acknowledge. If your back isn't an issue then how come you sleep on a board and take Flexeril every night????
You have a lot of other areas to dig still yet even if you don't see them.

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Re: When you don't always feel those "good" numbers

Post by chunkyfrog » Thu Aug 31, 2017 11:30 am

Thank you, Pugsy, for your willingness to share your experiences.
Hopefully, others will find comfort.

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Re: When you don't always feel those "good" numbers

Post by MaxINTJ » Thu Aug 31, 2017 11:43 am

Pugsy wrote: Your crappy sleep is worse later in the night...maybe because the effects of the Flexeril have worn off.
The fact that you need to take Flexeril at night before bed to get some sleep ...points to the back being more of a problem than you want to acknowledge. If your back isn't an issue then how come you sleep on a board and take Flexeril every night????
You have a lot of other areas to dig still yet even if you don't see them.
My back is such that if I'm not moving every so often it tightens up. During the day that isn't a problem, although sitting through a long movie or play can aggravate it for that reason. Flexeril stops the muscles from tightening overnight - until it wears off 7-8 hours later. I only get pain there after overdoing it - normal mornings it's just stiff until I get moving.

And oddly enough, sleeping on a mattress on my stomach or side really screwed it up, hence the board.

AFAIK, there is nothing that can be done for it beyond where it is.

And, since I've had it for over 15 years, it doesn't seem relevant now...
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Re: When you don't always feel those "good" numbers

Post by Pugsy » Thu Aug 31, 2017 11:51 am

xxyzx wrote: let me know your preference. i will either pray for you or not depending on your wishes.
Thank you.

Actually all I ask of you...get off the bully bandwagon and get back to just offering constructive advice.

Yes...there are bullies on this forum and most likely every other forum out there...and yes they are annoying....but you don't seem to realize that we all can see them (and you) for what they are and I don't really need you telling me that so and so is a bully. News flash...I already know that since I am pretty good at reading.
I got my own 2 eyes and they see and read quite well thank you.

I can see when someone is being an asshole and I don't need anyone else to continually harp on it...which ends up being far more annoying than the original asshole comment ever was.
When you continually harp on the bullies causing you to be a bully (and yes, that is what you are)...any potentially helpful stuff that you might want to share gets thrown totally out the window. All we see is a whiny spoiled brat continually excusing bad behavior on "bullies made me do it".

Two wrongs don't make a right no matter how justified a person might feel they are in doing that second wrong just to get even and that's all you are doing.

Is that really what you want us to think of you as??? You really want to be known as a whiny spoiled brat who can't get past someone picking on him and having to cry "bully" with every other breath. We've all been picked on...myself included. Most of the time I just call the offender a bad name under my breath and then move on. Sometimes I fight back...most of the time I don't though. I am human and never ever said I was perfect.

I can see for myself when someone is being an asshole...don't need you telling me that fact over and over and over and over again.
To the point that you are a bigger annoyance than the asshole ever thought about being.

Your choice as to how you want people to think of you here...yes...there will always be someone who tries to bully you...do you want to take it like a man or act like a spoiled 5 year old brat and end up making a bigger stink?
I can tell you right now that the bigger stink lingers a lot longer than a shitty remark someone might make.

And yes...I know I hijacked my own thread but it's mine and I can do whatever I want with it.

Please everyone else....don't let this thread become a "let's gang up on xxyzx" thread.....let it die so that this thread stays mainly a helping thread for stuff related to sleep problems and not personality conflicts.
We all know what someone else thinks about pretty much everyone else...no need to repeat it here.

If you want to bash someone...please take it elsewhere. Please let this be the only off topic response...and as for the questions I asked xxyzx....I really don't want you to answer them...they were only meant to get you to maybe think just a little bit about your own contributions to the gang of bullies you hate so much but are a full fledged member yourself.

Please let this thread be about the original topic if at all possible.

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Re: When you don't always feel those "good" numbers

Post by Bertha de Blues » Thu Aug 31, 2017 11:56 am

Pugsy wrote: Please let this thread be about the original topic if at all possible.
+1

Overall, I'm feeling better than when I started PAP therapy, but I still have those bad nights. Reading thoughtful comments by you and others on this forum has helped me to accept them and move on. Thank you.

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Re: When you don't always feel those "good" numbers

Post by Pugsy » Thu Aug 31, 2017 11:59 am

MaxINTJ wrote:And oddly enough, sleeping on a mattress on my stomach or side really screwed it up, hence the board.

AFAIK, there is nothing that can be done for it beyond where it is.

And, since I've had it for over 15 years, it doesn't seem relevant now...
Well maybe it is more relevant than you think.

Talk to your doctor about maybe changing the Flexeril to something else or maybe adding something else.
Your crappy sleep definitely is worse later in the night and it wouldn't be impossible for it to be something related to the meds wearing off and low level discomfort messing with sleep.
Hell...it might be a combination of several things.
The fact that you need to take medication...means that there's a problem...now how much of a problem and is it the cause of the crappy sleep...that's unknown.

Normally people don't have to take Flexeril and sleep on a board to get to sleep.

I don't have all the answers for you...I just know that there's a lot of area that you haven't dug into that might or might not bear some fruit.
You gotta think outside the box sometimes.

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Re: When you don't always feel those "good" numbers

Post by Madalot » Thu Aug 31, 2017 11:59 am

Pugsy wrote:Please let this thread be about the original topic if at all possible.
You got it. Pugsy, I am so sorry for all you are going through. It says a lot about who you are as a person that despite your pain, you spend so much time helping others here. And I truly appreciate all you said in this thread.

Thank you for being you.

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Re: When you don't always feel those "good" numbers

Post by MaxINTJ » Thu Aug 31, 2017 12:21 pm

Pugsy wrote: Well maybe it is more relevant than you think.

Talk to your doctor about maybe changing the Flexeril to something else or maybe adding something else.
First I have to get a doctor who isn't clueless (or just a sadist), then, there are no options for muscle relaxants . I tried the other one of the 4 top that wasn't outrageously expensive or addictive and it wasn't effect at all.

Yes, something might be able to be added, but I need to figure out how to change my PCP first.
Pugsy wrote:I don't have all the answers for you...I just know that there's a lot of area that you haven't dug into that might or might not bear some fruit.
You gotta think outside the box sometimes.
OK, you've suggested my back, I can look into that after I change doctors. Any other general or specific areas to look?

Like I said, sleep hygiene is excellent. Behaviorly, I don't think there's anything else I can do. It is very, very, very rare for anything external to wake me up.
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Re: When you don't always feel those "good" numbers

Post by Pugsy » Thu Aug 31, 2017 12:34 pm

MaxINTJ wrote:you've suggested my back, I can look into that after I change doctors. Any other general or specific areas to look?
Actually I would start with a good work up for the lumbar spine stuff. When was the last time you had it really looked at? X-rays, MRI and all that stuff? Is there something that could maybe be done to improve on the status quo? That's where I would start.

It had been probably 10 years since I last had x rays of my lumbar spine and pelvis... It blew me away when I saw the changes. I knew it was bad before but no idea just how bad.
I worked in the medical field for over 30 years and a lot of that in Radiology so I know what I see on x rays.
My first thought was "WTF...no wonder I feel like shit and sleep like shit". ..and you will have to laugh at this one...my doctor who normally doles out narcotics like Ebenezer Scrooge...for the first time ever gave me 3 RXs (1 month supply each) instead of just one 30 day supply to last 3 months until I saw him again. I didn't even ask for it. Once he saw the x rays...I got the good shit and he wasn't stingy about it either.
He knows me well enough to know that I won't abuse them...they are only taken as a last resort because they tend to cause significant GI issues when I take more than 1 within an 8 hour period.

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Re: When you don't always feel those "good" numbers

Post by MaxINTJ » Thu Aug 31, 2017 12:41 pm

Well, the last good look at my lumbar area was probably 17 years ago with an MRI. At the time there was only the herniation on the one disk. It hasn't gotten any worse over the years (subjectively), so I have had no reason to have it looked at again.
Besides, getting the VA to do an MRI is like pulling teeth apparently - they haven't even agreed to do one for my very recent neck issue - even though I have asked for one.
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