Please help with OSCAR data, getting desperate

[PeaceLoveAndPizza]

Being on the wrong settings and hoping it gets better is a path to frustration. We can help you help yourself, but only if you are comfortable changing settings. If not, the best we can do is make recommendations for you to share with your doctor.

[mesenteria]

The PAP device needs to be set up, much like your computer or tablet.  Once you have it set up to your liking, all you have to do from then on is to operate it at will.  

The humidity and air temp are easily manipulated by you.  You do this in 'options' by putting your fingertip on the home button, and then scrolling down with your finger to 'humidity' and hose temperature.  Set humidity to 'off' or to 1-3 at most, and tube temperature to 22-24 deg C.  I think you'll find that acceptable, but maybe off for both will be more comfortable.  

I place my tube in a horseshoe curve over my midsection, between the top sheet and the bottom covere.  This helps you to warm it, minimizing the need for electricity to warm the tube, and that way it helps to reduce condensation inside the tube and mask in a cool bedroom.

[Sylka]

Hello guys,

So  I was at the doctor 2 days ago and just as I thought she was more than satisfied with low AHI and that’s all that matters to docs. I tried explaining that even though I’m having low AHI I am still feeling very tired and I am not sleeping well at all. I asked her if she knew about OSCAR and of course she didn’t. I wanted to show her some graphs but she did not want. Everything must happen fast fast these days and docs are on schedule and not listening…. ☹ I said I have issues with my nose and I wish I hadn’t as she push all the problems on my nose issues. However, I have appointment at the end of July with ENT and I am not expecting much as my GP already told me ENT are not easily doing a surgery at all and I will most probably get a cortico spray which I already had and it did not help at all. I insisted that there is more to it as I am a bad sleeper for years and I suggested a sleep study at the hospital to determine what is wrong. She did not like the idea but with some convincing she said she will refer me for a sleep study. However in the meantime if the ENT comes with a solution she will cancel the sleep study and anyway there is a waiting list for at least 6 months ?Meaning I have to do with the settings I have now for another 6 months at least. She increased my starting pressure to 7 and the max to 8. I suggested higher one and with higher EPR but she was against it as it would give me more gas and air swallowing. She also warned me not to play with my settings.  I also managed to get a print of my home sleep study.

I attach 3 screenshots with the new pressure, 2 with N30i mask and one with the F30i. First night with the N30i I had some difficulties with sealing the mask but at the end it worked. I did not feel considerable difference with the new pressure. However now I am seeing more central apnea with the N30i and it worries me a bit. As I understand increased pressure can lead to CA and they can disappear eventually so I hope that’s the case. And just as before, I notice less CA and OA with the F30i but more RERA’s. Why do you think that is?

Also how would you interpret the sleep study results? I thought that home studies do not detect REM sleep and the other cycles but I see these in the report. I also asked the doc if only the AHI was measured or the RDI as well and she said no RDI. However, I see RDI in the report as well. Only the first page is in Dutch and the rest is in English so I hope you can make sth out of it.

Thanks again for all your help.

@mesenteria, thank you for your comment. I will hold on for as long as I can without the humidifier as I really don't like it though I assume in the winter I will have to use it because of dry and cold air.

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Attaching the sleep study screenshots in the next 2 comments.

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the last two pages

[Dodies]

I would try as suggested by others, increase the min pressure to 10 (in the clinical settings) before I did that myself, I found the mask made me feel claustrophobic and uncomfortable, with a bit more pressure its easier to breath and you should feel better.

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Also, you're posting graphs with German titles in an English forum, which is making it difficult to communicate

[Sylka]

@Dodies, thank you for your comment. I'm feeling a bit claustrophobic with the N30i, at the begging mostly. At some point in the night I start exhaling thorough my mouth leading to waking me up. Unfortunately I can't use tape as this is making me very uncomfortable. With the F30i mask I have no problem with insufficient air, rather when I get int deep sleep I assume, my mouth opens and I get chipmunk cheeks which again wakes me up. So it's a bit difficult to set all right. Concerning the pressure, I was warned by the doc to not play with the settings as only the company providing the CPAP machine is allowed to do it on her behalf. As other suggested, I may switch on airplane mode and try playing with the settings for couple of nights.

Reports are not in German but in Dutch   I mentioned that at the beginning of my initial post and gave some translations. In the meantime I've adjusted the graphs as much as I could and they correspond with the standard ones. The graphs on the right side are as follows: Events, Flow Rate, Pressure, Leak rate, Flow Limitations. On the right side, the events in color correspond with the English ones. I know it's not ideal but that's the best i can do.

In the sleep study only the first page is in Dutch, the rest is in English. I would appreciate some thoughts on the sleep study if anyone has any. Thanks!

[HalfAsleep]

@dodies. In defense of our dutch visitor, the chart's in dutch because, well... it's a dutch machine! You can tell what the elements of the graph are, though, and have some humor about how complicated "flow rate" in a heavily guttural unfamiliar language might look. By the time most of us could pronounce all those syllables, the night would be over.

[HalfAsleep]

@sylka Yes, it's normal for medical types to insist you can't change the settings. It's normal to get lectured. And, yes, they will insist that only your providing company can do that. Funny thing, if the doc can't do it, s/he might never know that you've changed the settings. S/he might be absolutely clueless about the machine. Sometimes, they even think it's not possible to change the settings right on the machine: little do they know.....
Your providing company likely doesn't care about anything except how low your AHI goes: I'll bet they get paid better if your AHI is <5. Their time is better spent keeping other clients to comply with using their machines every night.
This is my experience. It might be a bit different in the Netherlands, but there's a human psychology and business cost effectiveness to all of this that has nothing to do with the patient.

Here are some suggestions. Like you, I won't tape my mouth; it sometimes seems as though I need to breathe through my mouth, and there's no use fighting with what my body needs. Besides, it's unnecessary.
--look at the LankyLefty video on YT on the subject of chipmunk cheeks. He has some very imaginative humor, but he's very on point with his skills.
--stay with the F30i mask for now, so you're working with fewer variables and corrections. Get back to the other mask after your skills and knowledge develop.
—IMO don't get too consumed at first with your mouth popping open while using a full face mask. This is something to work your way to resolving, but it won't be any less therapeutic right away unless it creates a leak when your jaw drops.
—having your mouth open might give you a very dry mouth. This is true for me, and I've worked on that issue because I don't like it (not because it isn't therapeutic).
—I use a spray for dry mouth if it wakes me up. I keep it by my bed.
—I have switched to a very flat pillow. I got a super flat one (cheap!) at Ikea.
—I now wear a cheap cervical collar at night so my jaw doesn't drop (much). This took quite a bit of getting used to, but I now hate sleeping without it.
—You can wear the cervical collar loose. It's not for neck therapy!
—If you have a travel pillow for your neck, you can experiment sleeping in it, and see if your Oscar charts look improved.
—you may serendipitously find that if you wear a neck collar, you also reduce your apnea episodes. That's because it keeps you from obstructing the airway by bending at the neck.
—if you have trouble mastering all this, try and experiment with some of it while AWAKE, relaxed and watching TV or reading. This is a good way to acquire skills that then you'll be able to use without too much disruption at night.
—once you get a feel for what adjustments to make in the whole set up, then switch to another mask if you'd prefer. You might even find you'd like a different model of an FFM mask or a nasal mask, or whatever.

Hope this helps!

[Sylka]

@HalfAsleep, thank you for your comment! Yeah, docs here are mostly under pressure from the insurance companies and have little to no time for their patients. On several occasions I had to literally be very pushy and demanding to get any tests or examinations from specialists and when I finally got one, the waiting times are huge.I guess that's the "new normal", not only here but in other countries as well, which is very sad...

I've watched quite some videos from LankyLefty. His humour is a bit weird indeed but he seems very knowledgeable. It's great that there is much info on internet, youtube and forums such as this one so that patients can get some insight and knowledge. Most of us got send home with a machine and a mask and you got to deal with it.

I find it difficult to stay with one mask. I am constantly switching between F30i and N30i, trying to figure out which is better for me and which gives me better sleep. I also got to try the P30i but I am not very enthusiastic about it. It really dries my nose and is very uncomfortable to the point that it hurts the inside of my nostrils. I am inhaling though my nose, despite being congested, but exhaling through my mouth once I got into deep sleep. I am a bit concerned with using a cervical collar as I have big neck problems. Even the under straps from the F30i are hurting my neck. If I loose them then mask is leaking and if I tight them too much then my neck hurts. So I am trying to find a sweet spot somewhere in between. I also have a pinched nerve in my lower back which makes sleeping even more challenging. I have 20 pillows and none is comfortable. A flat one is also not a solutions as I have broad shoulders and need a thicker one. I bought a new mattress and pillow, from a good company, and tested it with my mask one so I have hope it will give me some relief. However I have to wait 3 months until these are delivered!

I will continue to use the machine every single night and hope that with time most of the issues will get fixed and I will finally be waking up rested and have more energy.


Thanks again for your help!