allama - Therapy Help

[PeaceLoveAndPizza]

Collars are not tight, unless you put them on tight or you have the wrong size. Some are very breathable and don’t feel hot. Worth keeping as an option.

[allama]

I hope I am doing this right, posting here and not starting a new thread. If that is wrong, please someone let me know. I am new and my brain is sleep deprived.

So, to keep it short, I have a bad history with sleep Dr.'s. Lots of lackluster Dr.s. and scam DME's who just want money. This Thursday I have an appointment with a new DR. I was hoping some of you super smart folks could help me out by taking at look at some of my OSCAR data and suggesting things I should bring up or discuss with this new Dr.

I do think I need to try other masks, although the current one I have works well enough when I can manage to sleep. I have leaks under control for the most part. I just have issues with an uncomfortable fit.

I am only 43 days into therapy. Things were going ok, but the last two weeks have been bad. Having tons of issues falling asleep and staying asleep. I do take melatonin, but it starting not working, so I am taking a week off to see if it helps. Still, even with it I was not going a full 4 hours before waking. Typically taking 1 or more hours to fall asleep and then 1 to 3 hours before waking up and having a lot of issues going back to sleep. I'm sad to say I have had to sleep a couple times without my cpap, but even then I was only getting 3 to 4 hours at most, and it feels a lot harder to breathe now without the cpap when I sleep (not to mention the sweating, leg cramps, heart racing, and having to pee as soon as I wake). So I much prefer to use the cpap.

My old pressure setting was min 6 and max 16. These were set arbitrarily by the last Dr. I saw. The last Dr also retied after our first patient visit. So she set that number, sent me to a sleep study, but did not ask for another triation despite me telling her the only tritation I had was poorly done and the numbers were fudged. (The 1st and only tritation was done at a facility that refused to give me my cpap script until I threatened them with legal action). They fudged the time I was asleep to make it within the required time. At that tritation, they said my number was an 8. Last Dr. knew all this, knew I was asking for another tritation, refused to send me to one. They did sleep study instead (had already done an at home one), then ordered the machine, then retired. 

I reset my min to 7 based on advice from this forum and what I was seeing in OSCAR (the pressure was going from 6 immediately to 8 almost every time.). However I think the max 16 is also too high. I have noticed when the pressure goes above 14, it causes arouses, and often wakes me up. (at least once I think it caused a CA event).

I am also having some odd breathing patterns that look a lot like CSR's without the full blown 10 seconds of no breathing. Although at least a few times there have been events in between them. So I am including some images of those bookmarks I made.

I will include the statistics page, overview page, and the sussy charts for the CDR's I think I might be seeing.

Current Machine Settings:
Mode:           Autoset
Max Pressure 16
Min Pressure  7
Mask             Full Face
Comfort
Response       Standard
Ramp Time     Off
EPR               On
EPR Type       Full Time
EPR Level       3
Climate Ctrl    Auto
Tube Temp.    79F

So thank you in advance to anyone who looks at this stuff and can help me get a better idea what it all means. It is really hard to read about OSCAR stuff and retain the new information since I am so sleep deprived. Having a lot of function issues from lack of sleep.

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Overview Charts

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Overview & Sussy CSR or maybe hyperventilating in sleep? not sure what is going on.

Happy to post more charts or more details if it helps get better answers.


I appreciate any help!

[HalfAsleep]

Most important thing I can say....It takes a while to begin to extend your sleep hours and feel rested. It could take several months. I'm only recently past the 4 hour mark myself, and am starting to stretch to 5 or 6 hours (this morning). So, your Oscar could look good as far as numbers (that's also the info the doc will look at), but you may not be adjusted just YET.

Until the last 3 weeks, I have been absolutely stuporous on my new machine, so my experience is similar to yours.

I am about 2 weeks further into my unit than you are, but I did use a CPAP years ago for a few months, so I have a little bit of head start in the knowledge arena.

Seriously, the best bet for settings is right here on this board. As I mentioned, even the sleep centers don't have the data we have from Oscar, except perhaps the techs. But you've gotta have a topnotch tech for that to be helpful! It is unlikely that you'll get a titration that's more honed than here. For one thing, a sleep study is done in an alien environment: far better to get the measurements in your own bed with sleep that's normal for you. I, for one, didn't even get REM during my titration study at the sleep lab.

Keep in mind, too, when it all comes down to it, the experience of sleep is a very individual thing: it's up to you to make it happen. Ownership is important. It sounds like you've figured this out already, but I've noticed most people (none on this board) think CPAP is plug-and-play, and they don't have to be accountable for their own sleep quality. This would be like getting a computer and never learning how to cut and paste.

I also would experience mask leakage if my pressure was as high as yours. I had to dial my pressure down one cm to minimize leaks that otherwise cause me to wake up.

Also, unless you bought the machine yourself, you have to meet some compliance requirements in order to keep the machine. I forget how many days/nights you need in a consecutive 30-day period, but I do recall 4 hours count per day/night. IMO if you are committed to using the unit, do whatever it takes to meet the compliance goal (i.e. at least 4 hours per day), even if it means adjusting to using it while watching TV or reading. If you're 43 days into therapy already, you're cutting it close.

I found a source for .3 milligrams of melatonin, and now take that if, in the middle of the night, I can't get back to sleep. It seems to boost whatever I took earlier that's supposed to be time-released.

After you're sorted here with pressures, there are comfort adjustments that may help you. These include getting a different mask, changing the humidity level, and changing the temperature of the humidity. All of this takes time.

You may have been issued a Simplus because your inhale pressure is high. My DME told me that's what he issues them for.

But, your pressure looks too high to me, too, as you observe. However, I am not experienced enough to advise someone on pressures, so don't trust my judgment on that.

I started using a cervical collar myself. I got used to it. If you have a very dry mouth during the night, the difference with a collar would be noticeable. Just don't do it tight: the purpose here is to keep your chin from dropping or tilting your head: it's not to keep your neck in a straightjacket, like it is for neck treatment. Other than that, if you sleep on your back, get a thin pillow.

Hope that helps.

Get your compliance numbers, otherwise all this info will be moot.

[allama]

Thank you for the reply,

I appreciate you trying to share what you know with me. As you mentioned, I am practicing ownership of my own cpap journey. I have done a lot of reading and I think I am up to date on the basics, like getting settings dialed in and the importance of mask comfort and fit, sleeping position, cleaning, etc.

I do not want to go for an in house titration now. I have enough OSCAR data I should not need to do that. I am just hoping some folks who are more experienced can look at my OSCAR data and give me insight about what is going on with me in my sleep, and if there are any important things to specifically discuss with my new DR. I guess I need to post a new post asking for data evaluation or something.

I have no compliance issues to worry about.

I already have humidity and temp dialed in. I was letting it do auto, but the last week or so I have been a little dry nosed, so I upped the humidity today. I have a Hygrometer next to my cpap to help me know if I need to make manual adjustments.

The mask is an issue, and I was given that mask because I was asked what kind I wanted. I went full face mask because I have a deviated septum and severe allergy issues. I tend to mouth breathe some times as well, but only if my nose is clogged. BUT, they did not let me try on anything else. They showed stuff to me, but I was not given an option to try any others just to see how they felt on. They also did not do a good leak test. They had me sitting upright and not moving around. I have since learned that I can test the fit better just by pressing on the side of my face to simulate laying down on my side. 

The leaking is not from pressure, it is from bad fit. Lots of folks have higher pressures than mine and are fine with this mask. My leak rate is under controll for the most part too. The issue for me is the fit and comfort. The mask pillow pinches my nose shut, because it wants to sit low on my face. The bridge of the nose is too low and I have to spend a lot of time fiddling with it to get it just right so it does not pinch shut and/or leak at the bridge. To prevent leaking around the chin I have to make it way too tight as well. It is bearable, but it pushes on my sinuses so firmly that it causes my sinuses to drain. That makes me have to cough and swallow. When I swallow it cause my ears to instantly clog. Then I have to detach the hose for a second or two and clear my ears. It makes for a lot of time fiddling with my mask and that makes me stressed and that makes it harder to get to sleep.

So my current mask is OK but not great. I'd like to think it could be better, so I am going to try some others through a vendor that lets you send masks back to try a different one for 30 days.

I take 2.5 MG of melatonin before bed and a 2.5MG booster when I wake up. My issue with taking the melatonin as a booster to help me fall back to sleep in between the wake ups is that I am loosing time. It started not working as well so I was taking 5MG before bed. I kept waking up having taken the mask off with no memory of it. At one point my data on OSCAR has a 2 hour gap of no data, when I know I was asleep. I somehow took the mask off for 2 hours, then put it back on, but have no memory of it. I have a clock plugged into the same outlet as the cpap and it was not blinking, so there was no power loss. I have a few of those, long gaps of no data, or waking up haven taken the mask off with no memory of it. So a short break from it can't hurt.

I am a side sleeper, I wake up if I roll onto my back. I have a pretty good pillow set up right now. I do not think a collar is for me. I feel uncomfortable even in just a turtle neck or collared shirt, so I do not think I would do well with even a loose fitting anything around my neck. I don't even like those neck pillows you use on airplanes.
Thanks again for the reply and for sharing what you know!

[Crimson Nape]

I have renamed this thread to "allama - Therapy Thread" to provide a more inclusive title for all your therapy related posts.  Using one thread for your therapy provides the reader your history and allows them to provide more targeted recommendations.  Please use this thread for all your therapy related posts.  At the same time, I deleted your other thread, which was a duplicate of post #12.

Additionally, I have sent you a PM confirming my actions as listed above.

Thanks for your understanding,
- Red

[PeaceLoveAndPizza]

Please show the entire night as described in the link in my signature “Format OSCAR Charts”. Always show the entire night first, then any zoomed-in parts you are concerned about. The rest is not of much use unless specifically asked for by someone.

From a settings perspective things look good. Flow limitations are a bit high, but not outrageous. I can’t see the rest of the left hand table nor all the graphs, so cannot comment on those.

I think you need to raise pressure to:

Min pressure 10
Max pressure 14
EPR 3 full-time
No ramp

That should help with the comfort and reduce the pressure swings. Once you get a better mask fit that should help with the leaks. It may take a bit to get used to the initial pressure, but relaxation is key. Once you relax and breathe with the machine, things will feel much better.

[allama]

Thank you Crimson Nape! I appreciate it. If my brain was rested I would have chosen a much better title to start with.





Thank you for the reply PeaceLoveAndPizza, and the advice. I will be sure to post full days from now on. I'll add the full day and all; the charts to this post. I have made all the adjustment as per the  “Format OSCAR Charts” page. Not sure why but it will not let me zoom out further to show more charts in the screen shot, so I have to take several.

I also think the max should be at 14. Could you please tell me what you that makes you think 10 would be a better min rate for me? I want to learn more about chart interpretation.

I also don't have too much issue with the pressure, I actually enjoy the feeling of being able to breath ok when I lay down, but something else is going on right now. Not sure what. The first month of therapy was almost exactly what I expected, but around the 1 month mark I started waking up after an hour or so of sleep and waking up with really high BP and pulse rate. I have hypertension, but I take meds for it, and it is not normal for me to wake up with such high bp. My BPMs actually dropped a lot form what was normal for me during the first month, so I was happy with that and other physical changes I felt from using the cpap. Something has changed since then though. I just don't know enough to understand my charts to say what it is that changed. I'll include my most recent nights charts also.

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6-4-24 Full is the most current day. Sorry each screen grab doesn't show more info. Not sure how to get it to. I have tried everything I can think of besides hand sizing each chart.

[allama]

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[PeaceLoveAndPizza]

There is a way to get everything to fit on a single screen, including the entire left table. Hopefully someone who has the magical incantations to say over a computer will chime in to help. Way beyond my computer skills.

Regarding the pressure, look at the left hand table for your median pressure. It is over 10, so 10 would be a good starting point to get rid of the pressure swings to get you to 10. 

Now look at your 99.5%, it is almost 14. So that is a good max pressure to set. 

Every night is different. Our mission is to help you get the best nights rest you can. While some are fine with their machine pressure swings, others have their sleep impacted by it. I like to reduce the range to the minimum required to avoid such issues. If folks prefer a wider range that works as well, it is just a personal preference.

[allama]

Thanks again for helping PeaceLoveAndPizza! 

I looked at the median pressure for all nights I have used the cpap and it ranges from 8.2 to 10.5. I will for sure up it. Just not sure how much yet. May do it incrementally. I am definitely going to lower my pressure too. I think 14 max is going to be a good level for me. 

However, I think something else is going on with me right now. When I first started the CPAP therapy, everything went pretty much as I would expect, very typical to what I had read about others experiences with starting CPAP. Still had some mask comfort issues but I was seeing lots of improvements in my symptoms in just that one month time period. No night sweats, no urgency to pee in the middle of the night or the morning. My BPM had dropped from my typical 70 to 80, to 60’s and 70’s. No high BP in the morning when I woke up. No leg cramps waking me from sleep, and my allergy symptoms had drastically improved! The first month was not bad, I even had a 10 hour sleep session! I really thought I was doing well. 

Then 2 or so weeks ago something changed. I started walking up every 1 to 2 hours. Had a hard time going back to sleep. My sleep sessions got shorter and shorter. I get adema in my feet and ankles if I sit too long, that usually goes away overnight when I sleep. I started waking with no reduction in the adema in my feet and ankles. If anything the adema was worse. I have hypertension and PVCs controlled (mostly) through medication. I started waking with very high stage 1 hypertension. I even had a couple episodes of stage 2 Hypertension.

Last night I tried to use my cpap again as normal, my BP was normal just before laying down to sleep. After an hour of almost, but not quite, falling asleep, I just couldn’t take it anymore and got up. BP was very high again too. I had to sleep without my cpap last night and I will sleep without it again tonight because I have to drive to the dr tomorrow and I don’t think I could safely drive there if I cpap again tonight. It takes an hour or more for my BP to come back dow after a bad cpap session. I have not had 4 hours of continuous sleep in over 4 days (not including the 5.5 hours i got last night without the cpap). 

Really hoping the Dr. can help me figure out what has changed that turned my cpap experience from typical to a sleep deprivation nightmare. 

I just know something is not right. Everything changed 2 weeks ago and I am not sure what it was. 


I appreciate you and the others who have replied to this thread for offering advice and education.