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[Treatment] Help with treatment etc
#1
Help with treatment etc
Hello

I have been using CPAP for around 4 years now and still experience extreme tiredness on waking and very unrefreshing sleep.  My AHI according to my Dreamstation was around 1.5-2 but when I had a PSG in August 2023 using my normal PAP settings it showed an AHI of 17. I was advised to increase pressure to fixed 15 which did reduce snore hugely and resulted in a much more even flow rate chart but it was difficult to tolerate due to leaks and aerophagia which was painful.  On further advice I reduced the pressure to APAP 11 with a max of 20 then in March I was further advised to increase the minimum to 13.5. This was because I was having prolonged desaturations during the night, particularly during the latter part of the night.  OHS was suggested but a blood gas test did not show OHS as CO2 and SpO2 were in normal range on that test. I tried the increased pressure again for a month or so but was still having issues with abdominal pain and gas so reduced back to 11 minimum for a while to help this. It did seem to ease the gas problem but I was still concerned I was getting desats and feeling bad on waking so recently increased back to 13.5. 


The problem I am now getting is I am getting increasing numbers of centrals in the latter part of the night/early morning. These are accompanied by extremely vivid dreams in rapid succession which are partly lucid and I am aware I am sleeping and even aware my breathing is stopping but struggle to rouse myself and it becomes frightening. I do have a problem with extreme and frequent dreaming but this is taking it to a new level.

I just want to be able to get refreshing sleep, and with reduced disturbances, dreams etc. The sleep study has eliminated narcolepsy and not found any other sleep orders so am assuming it has to be related to the OSA and am hoping that there may be a way forward if I get my treatment right - titrating pressures, pressure relief settings, cervical collars, switching to BIPAP etc - I would consider all of these if I could only work out what is needed.

I have posted the last few days charts.  Any help greatly appreciated


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#2
RE: Help with treatment etc
Hi csl1, your pressure is all over the place (and you're have OA and H events scattered throughout the night too), I'm an advocate for fixed pressure so in your case I'd like to see you try it by setting your dreamstation to cpap mode @ 16.5cm pressure with C-Flex+ enabled and set to 2, ramp off and give it two nights then check data/charts again please.   You should feel immediate comfort levels go up and less arousals because the pressure isn't fluctuation all night long. Smile

In using both resmed and phillips machines over the years there is a delay in Resmed's EPR in that there's a blip in the response time that the machine uses to let the lower pressure hang on too long.  I slept much worse on my resmed machines with EPR enabled than I did with my phillips machines with Flex enabled, it's part of the reason why I won't use a resmed machine again.

Also, as PL&P noted please make sure your machine is remediated, or that you didn't use an ozone cleaner or have it in a very humid room (the foam deteriorates in these conditions).

"edit"


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#3
RE: Help with treatment etc
Please upgrade OSCAR to the latest version 1.5.3. You are still on 1.2. I am assuming that this is a remediated Dreamstation with the original foam removed or the machine replaced as part of the Philips recall.

Any other health problems of which we need to be aware? Any medications? Vitamins? Any other health issues?

Between the variable breathing/periodic breathing/arousals and snores, I can imagine they must be rough nights. Your main difficulties appear to occur during latter stages/REM sleep, but we would need a sleep study to verify that.

We have some limitations on what you can do with your current machine, so we'll do the best we can. Consider trying the following. 

Min pressure 11
Max pressure 15
C-flex+ 3

We will likely have to tweak from there, but for now it is a place to start.

I admit I do not like how Philips does flex. ResMed does a much better job with EPR. A-Flex tries to get the timing right for inhale and exhale, C-flex does exhale only. ResMed EPR follows your breathing with changes for both inhale and exhale. As a result events are typically higher with Philips. Both A- and C-flex work best for those with strong respiration, if not they can be a problem.

If you want to get a new machine, I recommend looking for a nice low hours used ResMed Aircurve 10 Vauto. An Aircurve 11 is fine as well, but as they are newer it may be harder to find. We can continue to work with your current machine, but there are limits to what we can do with it.
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#4
RE: Help with treatment etc
As others have said, it's VERY important to know whether your PR machine has been remediated.

I hope the revised settings will help you have better sleep and less aerophagia. If they don't, we might want to discuss the ResMed VAuto machine that PLAP mentions. For some people, it can deliver therapeutic pressures while avoiding aerophagia via its ability to produce a greater difference between inhalation and exhalation pressures.

The number of CAs you're having aren't by themselves much of a problem, but I'm concerned about your night-time desats. How do you know about them? Was the blood-gas testing done during the day? Do you lie on your back during sleep? And has your doctor ruled out causes for the desats that don't involve obesity?
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#5
RE: Help with treatment etc
Hi

Yes the nights are pretty rough.  

I do have some other conditions. I take meds for blood pressure (ramipril and indapamide), anti depressants (citalopram 30mg though looking to reduce), proton pump inhibitor (Omeprazole 20mg) and some pain meds (Zappain 30/500, 2 x at night when needed for shoulder impingement which also makes finding comfortable sleeping position tricky but am generally a side sleeper). I take VitD daily following a severe deficiency in 2017 and also inject vit b12 monthly for pernicious anaemia/B12 deficiency. 

Sleep study in Aug 2023 showed N1 sleep of 39%, N2 39%, N3 5% and REM 28% with greatly increased prevalence of REM in latter part of night. SpO2 mean was 88% with 25% of sleep time below 90%. Arousal index was 41/hr.  

I may try the pressure and C-flex settings suggested by Phaleronic initially and see how I get on with aerophagia and leaks. If it proves too difficult will then look at the APAP settings you suggest.  I have never tried C Flex before and didn't actually know what A-flex and C-flex were until I just looked it up after reading the posts.  

My machine was replaced in recall.  It seems the advice so far is pointing towards BIPAP as the best solution. I have been struggling so long now I am tempted just to go ahead with buying the Aircurve 10 vauto.  Difficult to source in the UK but there is one available new from a US supplier (CPAP specials) with free international shipping and it looks a good price.
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#6
RE: Help with treatment etc
Hi

I know about the desats though overnight oximetry using a Checkme O2 device. There was overnight oximetry in the PSG too with very similar results.

Most recent (April) showed average of 89%.  18 drops > 3%. Time below 90% SPO2 was 65% but usually it is around 30%. Most of the time <90 is in second half of night.
 
The blood gas was done at my clinic in the morning, a couple of hours after I got up.  The sleep technician said the desats were nothing to worry about as it may just be normal for me.  I am not convinced they would not be having an impact though. 

They will not provide BIPAP without an OHS diagnosis or other lung function issue.  There are no other lung function issues that they can identify.
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#7
RE: Help with treatment etc
Hello.  I have now tried three days at revised setting suggested by Phaleronic (amended slightly to 16cm and C-flex set to 3).  Charts are below.

First night went well, second also good but mask fit issues causing problems with sudden brief leaks waking me and aerophagia issues. Third night had same problems but getting worse.  There seem to be two main difficulties:

1. Getting mask fit right.  I have to keep tightening to stop the leaks that occur at higher pressures when my face relaxes as I fall asleep. It is only a subtle change but it produces a sudden blow out of air at the side of my mouth. I have tried loosening the fit a little to see if that would work in case it was caused by overtightening but that makes it much worse. I end up having to have the mask very tight and so tight it is almost painful. The tightness can also cause my lips to part a little and my mouth keeps puffing out.  I have tried a lot of different masks in the past *(oh so many!) but I have only succeeded in sleeping with Amara View and Airtouch/Airfit F20 so not sure what to do about this.

2. Aerophagia. This is so bad on these higher pressure settings that the need to burp in the night has been waking me.  I am also very full of gas which is uncomfortable and is giving me next level flatulence. My mouth is so dry in the night everything is sticking together.

Despite all of the above I do think my sleep quality has improved.  Less good on night 3 but wondering if there might be a positional issue there?

Any suggestions for further adjustments/solutions? 

I have now gone ahead and ordered a Aircurve 10 vauto last night when I was not sleeping as there was a really good offer on for £807 for a new model imported from US (normally around £2,000 in uk) I am hoping this may help alleviate the aerophagia issues but not sure if it will help with mask fit.


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#8
RE: Help with treatment etc
I'm glad you had a couple of nights that were somewhat better and VERY glad you've ordered the new machine. It's not going to be a miracle cure, but I do think you'll be more comfortable with it.

Can your budget stretch to one more item? I'd suggest getting an oximeter that is compatible with Oscar. (For a list, click on Oximetry Wizard on the Welcome page.) It could be helpful to be able to see what your flow rate looks like when your O2 is both up and down.

Do you breathe through your nose during the day? I can't help but wonder whether you could manage with a nasal pillow mask, plus maybe some tape for your mouth.
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#9
RE: Help with treatment etc
Thanks 

I have a CheckMe O2 already so will have another go at trying to import from that using the wiki guide.

Re nasal mask suggestion, I do breathe through my nose during the day but previously tried a nasal pillow unsuccessfully although I didn't persevere much.  I tried and discounted a number of masks in the early days and always reverted to the Amara View but that was before I got used to xPAP and before my pressures increased so much so it may be worth revisiting them. I even bought some more than once because I forgot I had tried them already then found the old one in the drawer when I put the new one in to join it! 

With that in mind I am about to embark on a review of all of my mask collection. I can't remember why I rejected some of them originally so will do an experiment on fit, comfort leaks etc at my new pressures.  
 
In addition to the Amara View I have:

Resmed Airfit F20
Resmed Airtouch F20
Resmed Airfit F30
F&P Vitera
F&P Evora FFM
F&P Flexifit 431 
Respironics Dreamwear FFM
Respironics Dreamwear nasal pillow 

I'll keep a note of what works and doesn't this time. Should be fun. Wish me luck!
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#10
RE: Help with treatment etc
Good luck!

And if you breathe through your nose during the day, there's a reasonable chance you could use a nasal pillow mask. The reason I'm pushing that is that there are so many fewer millimeters of contact with your body, hence fewer places where leaks can happen. Also, the pillows anchor the mask a bit, which helps when you change position at night. And the shape of your nares isn't going to change as your face relaxes.

Mouth leaks can be a problem, so I recommend using tape to help keep your lips closed. I don't know whether you can get your hands on Somnifix strips in the U.K., but they're an easy way to get started with taping. Once you get the hang of it, you can buy suitable tape on a roll for a much lower cost.
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