Newbie: first morning after report

[Mannydog]

I went to the doctor yesterday and got the results of my sleep study:
Severe apnea (AHI: 43.3, RDI: 52.4, O2: 88%

Immediately went to the DME and got a machine, mask and chin strap, and used it for the first time last night.

The only discomfort I felt with the Swift FX was pressure on the bridge between my nostrils. Other wise the whole setup seemed pretty unobtrusive.
The biggest problem was that it seemed like I was up half the night mouth breathing and lip buzzing.
I tightened my chin strap part way through, and that may have helped keep my mouth closed, but whenever I was dozing off, I felt my lower lip buzz.
I feel extra crappy this morning. Also woke up with cottonmouth feeling/bad taste.

During my sleep study they tried on 3(?) types of masks, and that was what lead to the Swift FX prescription.
During my fitup at the DME, it seemed fine.
The guy I worked with from the DME is supposed to call today, so I will discuss with him, but how long should I give it before trying a different mask?
Is this something I might be able to work through with the current mask to make it work? I really like the minimal size and coverage.

I'm sure there are lots of discussions here relating to my questions, but I'm so fried I don't have the brain power to search and read right now.
I've seen some discussions of taping, but I don't know if I'm ready to go there yet, after only one night.
Does it sound like a full face mask is in my future?

I know its unrealistic, but was hoping for an overnight improvement, or at least losing ground.
I have been struggling so long with symptoms and my life spiraling out of control. I have another major disorder that causes severe anemia, fatigue and "brain fog", so it took me a while to consider apnea as a possible cause/contributor. Then once I wanted to check it out, it took 6 months from the first time I brought it up to my GP, until now. (thanks for a sympathetic place to vent)

[nanwilson]

Yes, either a ffm or tape will be your choices. There are many ffm's, if you go to cpap.com, take a look at all of them, read the recommendations and make your choice. As to taping........I agree with you, but if you feel that that is an option, just do a search on tape, and you will get a load of info. I use a Respcare/Innomed Hybrid, which i feel is the best of both worlds, it has pillows for your nose and a mouth piece.....I can still put my glasses on if I want to read or look at something. Many of the ffms do not allow you to do that as they have a forehead and accross the bridge of the nose piece..so glasses will not work. Others will chime in shortly and give you lots of suggestions, wade thru them and make your choice. Masks are not good or bad for each of us as our faces are all different, what works for me may not work for you. Good luck and welcome to the land of hoseheads .
Cheers
Nan

[Mannydog]

Thanks Nan.

One clarificatuion: I said cotton mouth, but that might not be the best wat to describe it. It wasn't dry. More like a damp and clammy feeling.
FWIW, I had my humidifier set on 2 as recommended by the DME.
I'm trying to figure out if that's from going all night with my mouth(mostly) closed, or 'cause I had some air escaping through my lip flapage.

[Pugsy]

I'm trying to figure out if that's from going all night with my mouth(mostly) closed, or 'cause I had some air escaping through my lip flapage.

Welcome to the forum.
May or may not be a bad case of mouth being open.
Let's get you educated on your software reports to see for sure how bad before tossing in the towel on the FX.
Check out your options on software here.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options

First night's are typically rough. I know we all want to have one of those over night miracles but in reality they are rare.
I had a whole week of feeling crappy till I got my software and saw that I was still having a truck load of events.
So let's get you comfortable with your data. I have the PR S1 Auto also. If you don't have the clinician manual I suggest you get it. Inside it tells you how to navigate around in your machine as well as some helpful definitions you will need with the software. If you will send me a private message with your private email address I can send the manual to you via private email. It is a pdf attachment and we can't do attachments with this forum email system.

BTW even if you are mouth breathing a little it doesn't mean all is lost. There are some things to do to limit it and sometimes people even learn to keep mouth shut. I did. We can talk about later.

For the tenderness between the nostrils, try loosening the top strap one notch. Probably a wee bit too tight. You can also use something like Lansinoh ointment if it seems a bit raw. It is found in baby section at Walmart. Breast feeding mom's use it to help with cracked nipples. Small amount during day and at night will help relieve soreness.

[robysue]

Mannydog,

Welcome to the forum.

If your machine is indeed the one in your signature---the S9 AutoSet---then you've got a great machine that will give you plenty of data to make this whole process of adjusting to the machine go a bit easier. So do double check that.

Re: the Leaks, lips buzzing, and cotton mouth.Can you check the data? Can you find the on-screen LCD and tell us what the 95% leak rate is? Better yet would be to download ResScan from Uncle_Bob's signature and look at the leak line.
(NOTE: The 1-day data on the machine's LCD are reset to 0.0 at noon local time each day. So to get data off the LCD, you need to check it before noon.)

Full face masks, taping, an a different chinstrap, and trying to train yourself to breath through your nose are all possibilities to explore. You said they went through three masks on your titration. What types of masks were the other two and what were the issues? Do you breath through your nose or mouth during the daytime?

Also, what's your pressure setting? And are you using EPR and/or the ramp? Because if you're using the ramp and fitting the mask at a very low pressure (like 4 or 5cm), but your therapy pressure is more like 10 or 12 cm, that might be part of why you started having problems with the lip buzzing and leaking and mouth breathing.


Re Mask comfort.You write:

The only discomfort I felt with the Swift FX was pressure on the bridge between my nostrils. Other wise the whole setup seemed pretty unobtrusive.

You may want to try the next size UP in pillows if the current pair is pinching the septum (the part of the nose between the nostrils). You may also want to make sure you're not stuffing the pillows up into your nostrils. It's only the tippy-tip of the cone that goes inside the nostril. Most of the cone is resting outside against the bottom of your nostril. Lanisoh cream can also help with sore noses/nostrils. It's lanolin for breastfeeding mothers to put on their dry, sore nipples. You find it in the baby supplies of most grocery stores and drug stores. It comes in a purple box.


Re: REASONABLE EXPECTATIONS. You write:

I know its unrealistic, but was hoping for an overnight improvement, or at least losing ground.

First: Very few people see overnight improvement---in spite of what your sleep doctor may have led you to believe. It's not natural sleeping with a six foot hose attached to your nose and there is indeed a learning curve. And some of us have a steeper learning curve than others.

Patience and persistence is the key to this therapy. It takes most new CPAPers several weeks to a few months to start noticing some improvement in how they feel on a daily basis. Some unlucky folks take many months before they start to feel better. A few unlucky people never really feel much better, but they keep plugging away at CPAPing night after night because they know what the repeated arousals and O2 desats are doing to their bodies and CPAP probably keeps them from continuing to deteriorate in terms of how they feel each day. Some unlucky folks do feel worse---sometimes much, much worse---for a while right after they start CPAPing. It may have something to do with repaying sleep debt. Or it may have something to do with being extra sensitive to all the sensory stimuli coming from the CPAP that can be very disrupting to your sleep---until your body sorts it out and learns to ignore it. The point is, it takes time to adjust and far too many folks simply give up before they've really given CPAP a full, fair trial with the appropriate amount of hard work to address their difficulties.

Next, see if you can access the full Sleep Quality report on your machine. There's a lot of data on it---provided the DME did give you the AutoSet and not the Auto Escape and provided the DME didn't lock you out of seeing the data. (And if you've got a locked AutoSet, never fear, we'll be happy to teach you how to turn on the reporting of the data. The reason I bring this up is simple: If your S9's pressure level is appropriately set to effectively manage the OSA, there's a lot of powerful positive reinforcement that can come from looking at the AHI numbers and seeing that they're below 5 (and maybe below 3) night after night after night. It is objective proof that the machine is doing its job and that eventually (and with the appropriate work) you will start to feel some improvement. And on the other hand, if those numbers don't come down to less than 5, then you know you've got a real problem to bring back to the doc who is treating you.

Re: Other health conditions. You write

I have been struggling so long with symptoms and my life spiraling out of control. I have another major disorder that causes severe anemia, fatigue and "brain fog", so it took me a while to consider apnea as a possible cause/contributor.

Is the other disorder under treatment? How effective is the current treatment? Is the severe anemia being addressed? If so, how?

Because until this other condition is also under control, it may be very difficult to subjectively feel much better while on CPAP. CPAP can only manage the OSA and it's not a magic bullet. It is entirely possible for the other condition to suck out of your system all the energy that the CPAP is trying to pump into the system by making it possible for you to get a night's sleep that is not constantly interrupted by breathing problems.

Best of luck!

[Pugsy]

If your machine is indeed the one in your signature---the S9 AutoSet-

Robysue...I had to go back to look to make sure but Manny shows PR S1 Auto in his profile.

[Mannydog]

Thanks for all the replies.

I only have time for a quick response for now (trying to get some work done now that I feel a little better than I did earlier).

The manual, the receipt and the machine all say "Remstar Auto A-flex".
Is that different than an S9 Autoset?

Yes, I believe the DME did lock me out of the data.
He called to check in earlier, and said he only had 14 minutes of data so far (around 10am).
I asked if I could access the data and he said no, only the doctor could discuss it with me.
I noticed in the manual that there are screens on the machine's display for AHI, Peridodic Breathing, etc, but when I cycle through the display they are missing.I have a data transmission device for the first 30 days for compliance verification.

He also said give it a little more time, but if I don't improve, to come in for a more extended fitting session.

My other condition is PNH, and it is being treated with Soliris.
It is as under control as it's going to get. My counts are pretty stable, and my Hemoglobin averages around 10.5.
I am pretty sure my cognitive issues are from the apnea at this point. I exercise daily and don't have many significant PNH symptoms (I used to have a LOT, before Soliris).

Also, the tech said he was setting the pressure at 9-12 (auto).
Scrolling through the screens on the machine, I can't even see any way to verify this, let alone change it (not that I want to).
Did I miss it, or is this normal with a locked machine?

Thanks all,
Michael

[Pugsy]

The manual, the receipt and the machine all say "Remstar Auto A-flex".
Is that different than an S9 Autoset?

Entirely different brand though both are auto machines. Instructions for one won't work on the other. Software..SleepyHead will work on both... otherwise need different software.

Also, the tech said he was setting the pressure at 9-12 (auto).
Scrolling through the screens on the machine, I can't even see any way to verify this, let alone change it (not that I want to).
Did I miss it, or is this normal with a locked machine?

Yes. They have turned off a little setting in the clinical setup that allows for the patient to view this secret data.
You can turn it on and they won't ever know. It won't show in the user manual but if you will send me a private message with your email address I will send you a copy of the clinical (DME) manual that shows how you can turn on the settings to allow you to view the limited on screen data.

If you have one of those wireless modems it may be covering the back slot where the SD card is. It is the SD card that is used to obtain the software data.

[archangle]

First, welcome to our little group, mannydog.

Rejoice! You got an excellent CPAP machine. It gives you excellent info on your therapy. You can get around your lowlife DME locking you out very easily. Many people get screwed by their DME and get a machine that doesn't record data. You won your first DME battle by default.

Don't worry about any problems the first week. You've got a gadget attached to your face blowing air into your nose. If anything that weird didn't screw you up for a while, something's wrong with you. Work with the problems, but don't obsess.


1) Your DME is a scoundrel for locking you out of your data. Many of them are.

If it's midnight and a DME says it's dark outside, go check.

2) Taping your mouth risks suffocation if the machine quits blowing and you don't wake up. You will be rebreathing your own exhaled air. Oxygen will decrease and CO2 will increase. This can cause you to sink deeper into unconsciousness and stop breathing. This is why the FDA requires all full face masks to have an anti-as phyxia valve.

Most people will wake up and be able to take the mask or tape off, but it's not a sure thing.

The other risk is aspiration pneumonia if you vomit before you can get the tape off. Aspiration pneumonia is very bad. Google it.

Many people tape anyway despite the risks. The risk may be small, but you'll probably be doing this for the rest of your life so risks add up.

3) Try to make the nasal mask work. They have several advantages over full face masks. (FFM). However, an FFM that works is better than a nasal mask with mouth leaks. You usually have 30 days to exchange a mask through the DME. Don't let the deadline pass if you need to change the mask.

4) Your machine will show the current pressure on the display. It doesn't show you the range, just the pressure it's at when you look. In your case, it will probably start at 9 cmH2O. During the night, it may adjust upwards to 12. If you ever have problems with the pressure during the night, look at the display before turning the machine off and note the pressure.

[Mannydog]

Well, I made it 7 1/2 hours with the mask on the 2nd night.
Still multiple wake-ups but they seemed less frequent and shorter.
Still mouth breathing/lip buzzing.
The mask/hose really didn't bother me much, and no soreness between my nostrils. It wasn't bad the first night but still some improvement.

I felt pretty crappy yesterday morning, but started to come around by noon or so and didn't feel too bad the rest of the day/evening.

This was a different pattern from what I've been going through over the last few months (years?).
Usually I feel OK when I wake up, and then the rest of the day is a roller coaster of highs and lows.

My big concern now is how to tell how I am doing.

I'm not scheduled to see my doc for another month and I'm not optimistic about getting much help from my DME.

Glad this forum is here...

[Mannydog]

Went into the DME to have my Swift FX mask looked at (he said last week if I still have mouth breathing to come in and let him check it out).
He didn't spend any time checking it out, said if I'm mouth breathing we should swap to a full face.

He recommended the Quattro LX. It actually felt pretty comfy in the store, so I thought I'd give it a try.
Very soon. The ambien is kicking in....

[Newbie Woman]

I'm one of those people who felt better quickly, but I don't think most people feel improvement for quite a while. I still have some very bad nights and it totally messes me up. As in, I feel so miserable today that I want to quit and sleep like a normal human.

To remind myself of what that was like for me, I keep a throw pillow in the backseat of my car. Just a couple of months ago, I was so near hysteria from lack of sleep that in the middle of the day, I crawled into the backseat of my car and went to sleep. It was sweltering hot but my body was so miserable it didn't care.

That was my personal low point. That pillow keeps me going when I think there's no improvement.

This is my long winded way of saying give it some time. Hang in there. Insist on getting the help you need.

[peterg]

if it hasnt been mentioned before, as a newbie FFm I recommend buying or making up a mask liner . it made it more comfortable, less leaky, and even soaks up some of the condensation. fleecy cloth from the fabric store was cheap for me.