Really Struggling

theonetruedevo · Post by **theonetruedevo** » Wed May 26, 2021 1:38 pm

For years I have been sleeping like utter garbage. No matter how long I'm asleep for I always wake up feeling like I only slept for 4 hours. I did a sleep study back in February and came back with an AHI of 15. Got started on a CPAP trail right after that using nose pillows. Hated them and they actually made my sleep quality even worse. Not a great start. I was recommended an Airfit N20 and I'm pretty happy with. The problem is I have seen 0 improvement in sleep quality or energy levels after 3 months of trials.

The initial setting was variable from 5-15, and at the start of May it was dialed into the previous months 90% value of 6. Looking back over the last week I can see that my average AHI is down to about 1.5, with one exception of a night at 3.7. Mask fit has been pretty much 100% the entire time.

These numbers are all pulled from the Phillips Dreammaker app, I'm just getting Oscar installed now to start getting better data.

I'm not sure what else I can be doing, the CPAP machine should be changing my life, but I'm not seeing any improvements.

zonker · Post by **zonker** » Thu May 27, 2021 10:45 am

theonetruedevo wrote: ↑
Wed May 26, 2021 1:38 pm
For years I have been sleeping like utter garbage.
<snip>
These numbers are all pulled from the Phillips Dreammaker app, I'm just getting Oscar installed now to start getting better data.

I'm not sure what else I can be doing, the CPAP machine should be changing my life, but I'm not seeing any improvements.

welcome to the zoo!

sorry we missed your post yesterday. yes, this can be a rough ride at the beginning, but with help from the forum, we can get you straightened out.

please get that oscar installed. once you do, you need to get the graph of data posted here (RIGHT HERE IN THIS THREAD) so that others can see that data. what we need to see is just what events make up your ahi. then advice can be given on what tweaks are needed to optimize your therapy.

a majority of sleep docs seem to think that once you have a machine, the job is done. to the contrary, the work has just begun. we are each different and we have different needs in our sleep apnea treatment.

btw, just as a wild ass guess, i'd say your settings are wrong. but we can't go making adjustments blindly so let's see that oscar data.

good luck!

Pugsy · Post by **Pugsy** » Thu May 27, 2021 10:53 am

How many hours of sleep are you getting?
Are those hours broken up at all with awakenings?
Do you take any medications of any kind? If so, what...include OTC stuff.
Any other physical or mental health conditions going on that might impact how you sleep or feel?

Exactly what symptoms are you having during the day that you wish you didn't have????
Fatigue, excessive drowsiness, etc???? Be as specific as possible please.

theonetruedevo · Post by **theonetruedevo** » Fri May 28, 2021 8:28 am

zonker wrote: ↑
Thu May 27, 2021 10:45 am
welcome to the zoo!

sorry we missed your post yesterday. yes, this can be a rough ride at the beginning, but with help from the forum, we can get you straightened out.

please get that oscar installed. once you do, you need to get the graph of data posted here (RIGHT HERE IN THIS THREAD) so that others can see that data. what we need to see is just what events make up your ahi. then advice can be given on what tweaks are needed to optimize your therapy.

a majority of sleep docs seem to think that once you have a machine, the job is done. to the contrary, the work has just begun. we are each different and we have different needs in our sleep apnea treatment.

btw, just as a wild ass guess, i'd say your settings are wrong. but we can't go making adjustments blindly so let's see that oscar data.

good luck!

Which graph should I post? This app has a ton of data in it. I just got a SD card for it, so I only have 1 days worth of data so far.

Pugsy wrote: ↑
Thu May 27, 2021 10:53 am
How many hours of sleep are you getting?
Are those hours broken up at all with awakenings?
Do you take any medications of any kind? If so, what...include OTC stuff.
Any other physical or mental health conditions going on that might impact how you sleep or feel?

Exactly what symptoms are you having during the day that you wish you didn't have????
Fatigue, excessive drowsiness, etc???? Be as specific as possible please.

7-9ish hours. I generally go to bed between 11 and 12 then my alarm goes off at 7 and I stop hitting snooze at 8.
Sometimes. Occasionally I need to go to the bathroom or take some more painkillers. Most nights I don't remember getting up.
Right now I've been taking a couple muscle relaxants before bed along with some CDB or indica weed before bed, and topping up on the muscle relaxants during the night if needed.
The biggest issue, and one that I think is a bigger problem then the apnea, is chronic neck pain. It really impacts my ability to fall and stay asleep. Like last night. I slept like absolute trash because my neck was hurting despite having my best ever AHI (<1.0)

Biggest symptom is just crushing fatigue. I have 0 energy or motivation to do anything I'm just extremely tired all the time.

jimbud · Post by **jimbud** » Fri May 28, 2021 8:50 am

theonetruedevo wrote: ↑
Wed May 26, 2021 1:38 pm
CPAP machine should be changing my life, but I'm not seeing any improvements.

theonetruedevo wrote: ↑
Fri May 28, 2021 8:28 am
Occasionally I need to go to the bathroom or take some more painkillers.
Right now I've been taking a couple muscle relaxants before bed along with some CDB or indica weed before bed, and topping up on the muscle relaxants during the night if needed.
The biggest issue, and one that I think is a bigger problem then the apnea, is chronic neck pain. It really impacts my ability to fall and stay asleep. Like last night. I slept like absolute trash because my neck was hurting despite having my best ever AHI (<1.0)

Biggest symptom is just crushing fatigue. I have 0 energy or motivation to do anything I'm just extremely tired all the time.

CPAP only deals with breathing issues.

That is all we can help with.

CPAP does nothing for neck pain. You need a doctor for that.

JPB

Pugsy · Post by **Pugsy** » Fri May 28, 2021 8:59 am

Names of meds please????
Strength and when do you take them?
Muscle relaxants sometimes have unwanted side effects that last for quite a while and fatigue is one of them.

You were expecting cpap to fix sleep issues caused by neck issues? Sorry, doesn't work that way. I am in the same boat but it is my lower back and pelvis that is the culprit.

theonetruedevo · Post by **theonetruedevo** » Fri May 28, 2021 9:38 am

Pugsy wrote: ↑
Fri May 28, 2021 8:59 am
Names of meds please????
Strength and when do you take them?
Muscle relaxants sometimes have unwanted side effects that last for quite a while and fatigue is one of them.

You were expecting cpap to fix sleep issues caused by neck issues? Sorry, doesn't work that way. I am in the same boat but it is my lower back and pelvis that is the culprit.

I take 2 of the Life brand Msucle and back pain platinum relief(200mg ibuprofen and 500mg methocarbamol) about 30 minutes before bed. This has been a recent addition. Seems to help me sleep a bit better with the trade off of waking up a bit groggy. Hence the snoozing. I used to wake up because my neck hurt and snoozing was impossible.

Yea, I'm pretty sure the sleep apnea isn't actually my real issue. But why would a doctor listen to me? Sleep study shows some apneas, so that's what it is, never mind the actual symptoms! This whole process has given me a very low opinion of most doctors. So I'm giving it an honest show while my chiro and physio slowly work on my neck.

theonetruedevo · Post by **theonetruedevo** » Fri May 28, 2021 9:54 am

And the initial sleep study clocked me at a 15 AHI, so sleep apnea is definitely an issue. Just maybe not the biggest issue. So getting this sorted can't hurt my sleep quality.

Pugsy · Post by **Pugsy** » Fri May 28, 2021 10:08 am

Doctors seem to have tunnel vision and tend to forget that people can have more than one problem that can mess with sleep and/or how they feel during the day. Sleep doctors don't always factor in other ailments. Remember the old joke...when you are a carpenter everything can be fixed with a hammer....when you are a surgeon then everything can be fixed with a scalpel...when you are a sleep doctor then everything can be fixed with cpap.

"Here..you have OSA...use the machine and you will immediately feel like superwoman/superman"
Nothing is further from the truth.
And people want to believe it so they do. They want a quick easy fix for all their problems.
Unfortunately most of the time the majority of people have more than one problem that needs to be dealt with in totally different ways.

That morning hangover/groggy thing....one of my main complaints about meds that are supposed to help me deal with the pain and thus sleep better.
We are damned if we do and damned if we don't....without the meds the pain will significantly mess with sleep and we feel like crap the next day. With the meds we may sleep better but the hangover thing makes us feel like crap as well.
I just decided that sometimes the hangover thing was less annoying than feeling like crap from pain disturbed sleep. I had to choose the lesser of the 2 evils.

BTW....muscle relaxants are notorious for making OSA worse. My sleep doctor told me once that she would rather see me take something like hydrocodone for the nighttime pain than muscle relaxants.
That's just as well...one little muscle relaxant would make me have the hangover effect for 3 days.

Another BTW....I also have cervical spine issues...in fact I have a metal plate in my neck because it was so eat up with arthritis that it was unstable and I had to have a couple of vertebrae removed and a dead person's bone implanted. It's miserable to have to deal with neck pain....and I always thought worse than lower back pain because with low back pain we can at least sit down and get some sort of relief but with the neck it never gets any rest because it is at least always supporting the head.

Keep working on reducing the neck issues as best you can. Bear in mind that any medication you might take for the pain at night...very likely will come with some excess baggage of some sort so you have to figure out which evil is the lesser of the 2 evils.

And yes...you still have to deal with the OSA stuff as well but it's the easier of the 2 problems to deal with.
Just have to change your expectations a bit and accept the fact that you have 2 problems to deal with and the solutions are different.

theonetruedevo · Post by **theonetruedevo** » Fri May 28, 2021 10:16 am

Pugsy wrote: ↑
Fri May 28, 2021 10:08 am
Doctors seem to have tunnel vision and tend to forget that people can have more than one problem that can mess with sleep and/or how they feel during the day. Sleep doctors don't always factor in other ailments. Remember the old joke...when you are a carpenter everything can be fixed with a hammer....when you are a surgeon then everything can be fixed with a scalpel...when you are a sleep doctor then everything can be fixed with cpap.

"Here..you have OSA...use the machine and you will immediately feel like superwoman/superman"
Nothing is further from the truth.
And people want to believe it so they do. They want a quick easy fix for all their problems.
Unfortunately most of the time the majority of people have more than one problem that needs to be dealt with in totally different ways.

That morning hangover/groggy thing....one of my main complaints about meds that are supposed to help me deal with the pain and thus sleep better.
We are damned if we do and damned if we don't....without the meds the pain will significantly mess with sleep and we feel like crap the next day. With the meds we may sleep better but the hangover thing makes us feel like crap as well.
I just decided that sometimes the hangover thing was less annoying than feeling like crap from pain disturbed sleep. I had to choose the lesser of the 2 evils.

BTW....muscle relaxants are notorious for making OSA worse. My sleep doctor told me once that she would rather see me take something like hydrocodone for the nighttime pain than muscle relaxants.
That's just as well...one little muscle relaxant would make me have the hangover effect for 3 days.

Another BTW....I also have cervical spine issues...in fact I have a metal plate in my neck because it was so eat up with arthritis that it was unstable and I had to have a couple of vertebrae removed and a dead person's bone implanted. It's miserable to have to deal with neck pain....and I always thought worse than lower back pain because with low back pain we can at least sit down and get some sort of relief but with the neck it never gets any rest because it is at least always supporting the head.

Keep working on reducing the neck issues as best you can. Bear in mind that any medication you might take for the pain at night...very likely will come with some excess baggage of some sort so you have to figure out which evil is the lesser of the 2 evils.

And yes...you still have to deal with the OSA stuff as well but it's the easier of the 2 problems to deal with.
Just have to change your expectations a bit and accept the fact that you have 2 problems to deal with and the solutions are different.

The trade off is definitely worth it for me. The "hang over" is really just being a bit groggy in the morning and it only lasts for about an hour. With the CPAP my AHI has dropped from 15 to <5 and hit a new low of .7 last night, so any increased issues that the muscle relaxants may cause, seem to be countered by the cpap machine. Once I know what data to post hopefully there will be something obvious in there can be tweaked to help me out.

Pugsy · Post by **Pugsy** » Fri May 28, 2021 10:30 am

viewtopic/t158560/How-to-post-images-for-review.html

Above thread has some examples of the graphs/data we like to see.

If you are striving for AH 0.0.....quit...while sometimes we do get lucky and hit that milestone it is an unrealistic expectation and doesn't really guarantee feeling like superman anyway.
It's normal to have a random apnea event flagged while asleep and even more normal to have something flagged while awake when it doesn't count. Think of them as false positives when that happens.
The machine only measures air flow and awake breathing is irregular and the machine sometimes will mistake that awake breathing irregularity as some sort of apnea event.

Perfect numbers don't guarantee perfect sleep.

zonker · Post by **zonker** » Fri May 28, 2021 10:37 am

theonetruedevo wrote: ↑
Fri May 28, 2021 8:28 am

Which graph should I post? This app has a ton of data in it. I just got a SD card for it, so I only have 1 days worth of data so far.

i see pugsy has posted the answer and i leave you in her capable hands.

good luck!

theonetruedevo · Post by **theonetruedevo** » Fri May 28, 2021 10:52 am

Alright, here it is. Around 2 am must be when I popped the mask off to take some more muscle relaxants and go to the bathroom.

: screenshot-20210528-104718.png (105.57 KiB) Viewed 480 times

Pugsy · Post by **Pugsy** » Fri May 28, 2021 11:48 am

They have you using fixed cpap mode. With the Respironics machines the Flow Limitation recording is turned off in fixed pressure mode.
So the absence of any FLs doesn't really mean much.

Did you have a little trouble falling asleep or staying asleep during the period of time before the 2 AM break?

In fixed pressure mode you have to realize that the machine can't auto adjust should it need to (doesn't appear to need to at this time though) if meds or positional issues cause a need for more pressure because they might worsen OSA and cause a need for more pressure.

Overall a very nice report with the only hint of ugliness being the small number of events that happened prior to 2 AM. Not horrible though and potentially explained away by false positives (also called SWJ or sleep/wake/junk) if you weren't sleeping soundly and maybe doing some tossing and turning.

No urgent need to change any setting except maybe switch to auto mode to get flow limitation recording but to be honest...I would bet you don't have many. There is a way to do fixed pressures in auto mode as well. So if a person prefers fixed pressure we can do that easily and still have FL flagging turned on.

I think you just need time using cpap and give your body a chance to adjust. After all it's not exactly normal to have an alien strapped on your face blowing air up your nose.

I think it took me about 3 months before my brain quit waking me up just to tell me "hey dude...do you know you have some sort of alien plastered on your face???" and I actually had no problems with the mask or pressure but my brain sure thought it was a weird creature and wanted to warn me about it.

theonetruedevo · Post by **theonetruedevo** » Fri May 28, 2021 2:29 pm

Pugsy wrote: ↑
Fri May 28, 2021 11:48 am
They have you using fixed cpap mode. With the Respironics machines the Flow Limitation recording is turned off in fixed pressure mode.
So the absence of any FLs doesn't really mean much.

Did you have a little trouble falling asleep or staying asleep during the period of time before the 2 AM break?

In fixed pressure mode you have to realize that the machine can't auto adjust should it need to (doesn't appear to need to at this time though) if meds or positional issues cause a need for more pressure because they might worsen OSA and cause a need for more pressure.

Overall a very nice report with the only hint of ugliness being the small number of events that happened prior to 2 AM. Not horrible though and potentially explained away by false positives (also called SWJ or sleep/wake/junk) if you weren't sleeping soundly and maybe doing some tossing and turning.

No urgent need to change any setting except maybe switch to auto mode to get flow limitation recording but to be honest...I would bet you don't have many. There is a way to do fixed pressures in auto mode as well. So if a person prefers fixed pressure we can do that easily and still have FL flagging turned on.

I think you just need time using cpap and give your body a chance to adjust. After all it's not exactly normal to have an alien strapped on your face blowing air up your nose. I think it took me about 3 months before my brain quit waking me up just to tell me "hey dude...do you know you have some sort of alien plastered on your face???" and I actually had no problems with the mask or pressure but my brain sure thought it was a weird creature and wanted to warn me about it.

I definitely was having trouble staying asleep since I woke up because my neck was hurting, so disturbed sleep before that makes sense.

How long does that adjustment period usually take? I have had this machine since mid-February and am coming up on a couple months with this mask that is comfortable. Right now it generally doesn't bother me to wear. Sometimes I roll over in such a way that I get little blasts of air hitting me in the eyes, but once I adjust the mask or how I'm laying that goes away.

Sounds like this may be more confirmation that sleep apnea isn't really the problem. Anyone want to take bets on if the doctor actually listens to me this time?

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