1 Month in and I just feel worse.

[Sova]

Hello all! I'm hoping someone can help or at least provide some encouragement. After a year of waiting for appointments, sleep studies, etc. I was finally diagnosed with mild sleep apnea (AHI 10 on my at-home test) and got an APAP Machine (Phillips Respironics Dreamstation). As I expected I slept terribly the first week as I was still getting used to my mask (Phillips Dreamwear nasal cushion- ie not the part that goes into each nostril individually but the single hole) but I finally started sleeping through the night every night.

My problem is, aside from 2 or 3 days were I felt GREAT or just normal, I just feel worse, even if I sleep a full 7-8 hours. I can't get anything done at work or at home. I feel like a zombie. I'm 3 weeks into treatment now and fearing that it won't get better. It's easy for me to fall asleep each night, I'm keeping the mask on all night, I'm just not rested. I did wake up frequently due to leaks on my mask blowing around my face, but after switching to the medium nose piece that has reduced, although I still wake up sometimes. Despite these repeated wakeups my machine claims I have no leaks, even though it feels like I leak almost every time I move my head (exclusively a side sleeper).

My AHI remains high (I think???) and hovers between 5 and 8 most nights with one or two exceptions where it's lower. I called my supplier (they said to call if I had any problems) who said that anything under 10 is good (um, ok that was my AHI before treatment) and that my doc would have to make any adjustments. I have an appointment with my doc's PA next week, I guess I'm just wondering the following:

Am I just catching up on sleep debt? Will I just start to magically or gradually feel better?
Is AHI 5-8 really good or is there anything I can do to improve? My pressure setting is min 5 max 20.
How do I make sure the PA doesn't just pat me on the head and send me away next week? What can I ask him?
Am I crazy for not liking the Dreamwear mask? Is it just because I've never used the other/supposedly worse masks? I feel like the tube always gets stuck between my pillow and headboard, the nosepiece tickles my nose, the frame slides all over my head, I feel like I'm blocking air when I sleep on my side (even though it's supposed to flow through the other side), etc. Maybe I'm just a spoiled newbie?

I'm experimenting with masks to see if there's something I like better, just ordered the Amara View off of Amazon. Probably a mistake but I just really want to do something to make this better and am wondering if full-face will help improve AHI, I really have no way of knowing if I'm breathing through my mouth at night or not.

[Pugsy]

Welcome to the forum.

Get SleepyHead and post some images of a typical detailed report.
You can find it here..just follow the links.
https://sleep.tnet.com/equipment

See the thread for the format we like to see the graphs in. We con't need all those graphs...just the basics and you can get everything on one image.
viewtopic/t158560/How-to-post-images-for-review.html

I suspect that your minimum pressure isn't optimal but I need to see what's happening first. There are other data points that also point to sub optimal therapy that don't show up in the AHI numbers.

AHI of 5 to 8...I sure wouldn't be happy with it but lets see what that AHI is composed of and also see what else might be showing up that isn't part of the AHI.

Go here and request a copy of the provider/clinical manual for your machine. There's some useful information in it that isn't in your user manual.
https://www.apneaboard.com/adjust-cpap- ... tup-manual

[Sova]

Thank you so much!! I was hoping someone on here could help, my appointment isn't until Thursday and I don't know if I can go another week feeling like this. Was thinking about taking a break from the machine so I can just be coherent tomorrow (I have a 3 year old and am watching him solo this weekend since my husband is out of town).

I also suspected that my lower bound flow setting is too low. I'm a Data Scientist so I don't mind looking at plots and graphs but just don't know enough about Sleep Apnea to know what all the numbers and plots indicate yet. I included 3 graphs here, please let me know if you need additional information or if I did it wrong! Unfortunately I couldn't figure out how to hide the pie chart, let me know if that's an issue. I included last night's report which is a typical, if not slightly better than average night for me (5.19 AHI), one of my better nights (3.56 AHI), and one of my worst nights (7.22 AHI). Happy to provide additional examples if needed.

I hadn't planned on adjusting my pressure myself... but like I said I don't think I can go another week feeling like this so I may just go ahead and experiment if someone can confirm that it might help!

[Sova]

Also worth mentioning, I never had a titration or even an in-lab study. They just did an at-home study and ordered me a a machine with (what I've read is) this default/"lazy doctor" setting.

[Pugsy]

1 cm more minimum..maybe 2 cm but I like to go slow and be conservative because sometimes a relatively small change can impact things a lot more than we think.
Plus it's usually an easier adjustment.

[Sova]

1 cm more minimum..maybe 2 cm but I like to go slow and be conservative because sometimes a relatively small change can impact things a lot more than we think.
Plus it's usually an easier adjustment.

Thanks, I’ll give it a try! I’m still going back and forth with myself about whether or not I should adjust the pressure myself. I know it won’t break the machine or anything but I don’t want to annoy my doc... I know some are more ok with it than others. At the very least this will help me tell the PA what needs to be done (and for sure I’ll do it myself if he doesn’t do anything.

Out of curiosity, was there anything in my data that suggests I need a higher min pressure? I’ve been reading up on Sleepyhead and am curious what the markers are.

[Julie]

If your doctor gets 'annoyed', fire him!

It's your life, your therapy, your results to tweak. We've all done it for decades and the Cpap police never showed up.

Oh, and the fact you feel worse, the fact your AHI's are high, and the fact you're at almost the lowest (4) pressure the machine records might just be reasons to try raising your pressure.

[Pugsy]

Out of curiosity, was there anything in my data that suggests I need a higher min pressure? I’ve been reading up on Sleepyhead and am curious what the markers are.

In general I don't like all the clutter for one thing...clutter being the snores and Flow limitations that aren't part of the AHI.
Then add in your AHI which is higher than I would like to see...just a general "too much stuff getting flagged" and everything but the CAs/centrals will usually easily respond to just a little more pressure.
The minimum pressure is actually the most critical pressure setting. It's what give the machine a head start by holding the airway open and then a better jumping off point if it tries to collapse.
These machines can't increase the pressure in the blink of an eye. They actually go up or down over a period of a few minutes and if the machine can't increase fast enough (because it has too far to go) then the airway collapses and opens back up while the machine is still trying to decide what to do.

None of them will increase the pressure with an OA or hyponea is actually happening. They can't/won't try to "blow the airway open" or brute force the airway tissues open.
They work best by preventing the airway from collapsing in the first place and for the times that it might try to collapse that minimum has to be close enough where the machine can get to where it needs in a timely manner.

Example...when I was using the Respironics APAP...I had an AHI between 5 and 8 with the minimum of 8 cm.
I also had a lot of clustering of OAs and FLs...probably during REM where my pressure needs are higher. The AHI of 5 ish wasn't horrible but it was more than I like to see plus the clusters were actually fairly dense and the overall average AHI might have not been horrible but it was off set by the periods of sleep in non REM where the 8 cm pressure did a good job.
I ended up sometimes needing 16 to 18 cm in probable REM sleep. The machine just couldn't get there fast enough to prevent the airway from collapsing. Once I increased the minimum to 10 cm...then it could get up to where it needed to be to better prevent those REM collapses. So not only did my AHI reduce...the dense clustering of events broke up and I only had a random event happen in REM.

I don't know if you were on your back or REM sleep...but the fix is still the same...just a little more minimum pressure to better stent the airway open in the first place and prevent the bulk of the apnea events from happening in the first place.

CAs or centrals...we can't do anything about them with your machine except watch them. A few here or there is normal anyway so we don't worry about just a few centrals.
At this point you aren't really having enough centrals to worry about and I am betting some of what you see flagged is probably a post arousal central because one of the flagged obstructive events caused an arousal. If we reduce the flagged obstructive stuff then I wouldn't be surprised to see some of your centrals also reduce because the arousals were reduced.

[Sova]

These machines can't increase the pressure in the blink of an eye. They actually go up or down over a period of a few minutes and if the machine can't increase fast enough (because it has too far to go) then the airway collapses and opens back up while the machine is still trying to decide what to do.

None of them will increase the pressure with an OA or hyponea is actually happening. They can't/won't try to "blow the airway open" or brute force the airway tissues open.
They work best by preventing the airway from collapsing in the first place and for the times that it might try to collapse that minimum has to be close enough where the machine can get to where it needs in a timely manner.

Aha! You've answered my biggest question I think. I was assuming that since I had an APAP machine it should be able to adjust "on the fly" to resolve my OAs and hypopneas while they were happening. So while I knew people report that raising the lower minimum pressure helps, I didn't fully understand why (if, in theory the machine could auto-adjust immediately anyway). This all makes a lot more sense. This will really help guide my discussion with my doctor this week!

Thank you for your thorough responses! I really, truly appreciate your help. This whole process has taken so long because I had to do two at-home sleep studies and this center was so busy that there was a 4+ month wait for each one (since they had limited equipment). I've just been getting more tired and more tired and it was even more frustrating knowing what was wrong (or could be wrong) but not being able to do anything about it. I ignored it for so long because I have a small child and just thought that "parents are always tired" so I shouldn't complain... but the typical parent is not THIS tired all the time.

[Sova]

If your doctor gets 'annoyed', fire him!

It's your life, your therapy, your results to tweak. We've all done it for decades and the Cpap police never showed up.

Oh, and the fact you feel worse, the fact your AHI's are high, and the fact you're at almost the lowest (4) pressure the machine records might just be reasons to try raising your pressure.

This is a really good point! I suppose I'm just a bit skiddish because my machine is rent to own (with like really small monthly "rental" copayments from me, and I assume larger payments from my insurance to the supplier) so until I fully own it I don't want to do anything to somehow "break the rules" and make my insurance stop paying.

I may just go ahead and change my pressure anyway, since as you said, it's my life and my therapy and I want good results!

[palerider]

I suppose I'm just a bit skiddish because my machine is rent to own (with like really small monthly "rental" copayments from me, and I assume larger payments from my insurance to the supplier) so until I fully own it I don't want to do anything to somehow "break the rules" and make my insurance stop paying.

I may just go ahead and change my pressure anyway, since as you said, it's my life and my therapy and I want good results!

I have NEVER heard of a single insurance company that gives a crap about whether your machine is actually working for you... All they care about is "compliance", and that means "is the patient using that expensive thing we bought?"

You owe it to yourself to make it work as good as it possibly can. Nobody else is going to care about you as much as you should.

[Sova]

I have NEVER heard of a single insurance company that gives a crap about whether your machine is actually working for you... All they care about is "compliance", and that means "is the patient using that expensive thing we bought?"

You owe it to yourself to make it work as good as it possibly can. Nobody else is going to care about you as much as you should.

You are totally right! Actually now that I think about it, my DME isn't even monitoring my pressure (I was originally under the impression that they were the ones monitoring and doing the tweaking, not my doc) so there's not really any way for my insurance to know I've adjusted it!

I'm definitely making a change tonight. Thought I was feeling better this morning but had an AHI of 6.5 and I'm a zombie again this afternoon with a mean headache (although that could be unrelated to sleep apnea because it didn't show up right after I got out of bed).

[palerider]

I have NEVER heard of a single insurance company that gives a crap about whether your machine is actually working for you... All they care about is "compliance", and that means "is the patient using that expensive thing we bought?"

You owe it to yourself to make it work as good as it possibly can. Nobody else is going to care about you as much as you should.

You are totally right! Actually now that I think about it, my DME isn't even monitoring my pressure (I was originally under the impression that they were the ones monitoring and doing the tweaking, not my doc) so there's not really any way for my insurance to know I've adjusted it!

I'm definitely making a change tonight. Thought I was feeling better this morning but had an AHI of 6.5 and I'm a zombie again this afternoon with a mean headache (although that could be unrelated to sleep apnea because it didn't show up right after I got out of bed).

The dme can't, legally, change your pressure without doctors orders, you are not under that restriction... Even if someone tells you that it's "illegal" for you to change your own pressure, they're wrong.

I'd feel like crap I'd my ahi was 6.5.. heck, I feel it if it's over 2!

6.5 is like being poked with a stick every 9 minutes or so.

[jamesbond007]

Hello all! I'm hoping someone can help or at least provide some encouragement. After a year of waiting for appointments, sleep studies, etc. I was finally diagnosed with mild sleep apnea (AHI 10 on my at-home test) and got an APAP Machine (Phillips Respironics Dreamstation). As I expected I slept terribly the first week as I was still getting used to my mask (Phillips Dreamwear nasal cushion- ie not the part that goes into each nostril individually but the single hole) but I finally started sleeping through the night every night.

My problem is, aside from 2 or 3 days were I felt GREAT or just normal, I just feel worse, even if I sleep a full 7-8 hours. I can't get anything done at work or at home. I feel like a zombie. I'm 3 weeks into treatment now and fearing that it won't get better. It's easy for me to fall asleep each night, I'm keeping the mask on all night, I'm just not rested. I did wake up frequently due to leaks on my mask blowing around my face, but after switching to the medium nose piece that has reduced, although I still wake up sometimes. Despite these repeated wakeups my machine claims I have no leaks, even though it feels like I leak almost every time I move my head (exclusively a side sleeper).

My AHI remains high (I think???) and hovers between 5 and 8 most nights with one or two exceptions where it's lower. I called my supplier (they said to call if I had any problems) who said that anything under 10 is good (um, ok that was my AHI before treatment) and that my doc would have to make any adjustments. I have an appointment with my doc's PA next week, I guess I'm just wondering the following:

Am I just catching up on sleep debt? Will I just start to magically or gradually feel better?
Is AHI 5-8 really good or is there anything I can do to improve? My pressure setting is min 5 max 20.
How do I make sure the PA doesn't just pat me on the head and send me away next week? What can I ask him?
Am I crazy for not liking the Dreamwear mask? Is it just because I've never used the other/supposedly worse masks? I feel like the tube always gets stuck between my pillow and headboard, the nosepiece tickles my nose, the frame slides all over my head, I feel like I'm blocking air when I sleep on my side (even though it's supposed to flow through the other side), etc. Maybe I'm just a spoiled newbie?

I'm experimenting with masks to see if there's something I like better, just ordered the Amara View off of Amazon. Probably a mistake but I just really want to do something to make this better and am wondering if full-face will help improve AHI, I really have no way of knowing if I'm breathing through my mouth at night or not.

Can you try elevating your upper body by just a few degrees during sleep? Either get an extra pillow or something and try if it helps? Of course, all other points that Pugsy made are, obviously, valuable. Just one low hanging fruit to prove or disprove. In my case, just adding another pillow under my head meant a dramatic change in my AHI. Doesn't hurt to try.

[Sova]

Can you try elevating your upper body by just a few degrees during sleep? Either get an extra pillow or something and try if it helps? Of course, all other points that Pugsy made are, obviously, valuable. Just one low hanging fruit to prove or disprove. In my case, just adding another pillow under my head meant a dramatic change in my AHI. Doesn't hurt to try.

Good idea! I saw that this had helped someone in another thread so I tried putting a few folded towels under my pillow last night. Not sure if it helped at all, may try adding towels until it's uncomfortable or things improve.

Update: I raised my min pressure to 6 last night, I'm not sure if it helped, I didn't notice the difference in pressure which is nice, but for some reason my machine upped it to 8.5 automatically while I was reading in bed and I had some weird anxiety that I had somehow messed up the machine and it would just keep going up and up and up and not stop (irrational, I know, it's weird what our brain does when on the edge of sleep...). I had more mask issues last night and a lot of mask-related wakeups but this could be a combo of higher pressure + propping up my pillow into a different position (as mentioned above) + weird anxiety. AHI was 5.2, but I haven't had a chance to load the data into sleepyhead yet to really see how the extra pressure affected things.

I think tonight I'll up it to 7, adjust my ramp settings (which are currently on the default of a 5 min ramp from 4 pressure to 5 pressure... not very useful) just in case I get weird anxiety again, and see how it goes.

I'm still curious to try a different mask, even though everyone says mine is the most comfortable one. I just have so many mask issues at night related to lying on my side, which causes the air tubes on the side of my face to shift the nosepiece or block air. I just can't seem to get a good fit with this mask. If I pull the straps really tight then the nosepiece feels like it's too far up the tip of my nose... but also the tubing on the top and sides still shifts around. If I loosen the straps then the whole mask really shifts around and I get leaks all over my face. My Amara View parts came int he mail today... but my attempt to save money backfired and I realized I was missing a key piece (the part that holds the mouth/nosepiece on and clips into the headgear). Should've just bought the whole mask together.