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Hello and advice?
#1
Hello and advice?
Hi, I'm new.

I've been using my CPAP machine for about a week now, and generally don't manage to make it more than 2 hours a night with the mask on. Some mornings I wake up and don't remember having taken it off.

Most of the time however, I wake up with having a massive coughing fit.

I just had a rough patch of bronchitis not quite a month ago, and my cough reflex is still pretty strong. It seems like the CPAP is irritating my throat and triggering that reflex pretty constantly. The half pressure ramp up (at 4) seems to be ok-ish if I really concentrate on relaxing and slowing down my breathing but once it hits full pressure (8, which I am told is very low) it's all over. Even if I have managed to fall asleep before full pressure is on, once it is, I generally wake up fighting it right away or having coughing spasms within 30 minutes of that point.

So I guess my question is this..... is the remnant of the bronchitis causing some of my issues or is this how it's going to be? Because I am pretty unhappy with the whole thing. I want/need this to work, and I'm trying everything I can think of not to fight this every night, but I feel like I am not having any success.

I've tried wearing the mask while the machine wasn't on during the day.
I've sat wearing the mask and having the machine on during the day while I was not trying to sleep and was just sitting and reading quietly. I don't like it, but it doesn't make me miserable and I seem to do OK with it, so I don't think I am freaking out about wearing the mask, though it's not my favorite thing ever.

I'm not sure what the next step is to make my body understand it's OK and let me sleep with the mask and CPAP on.

Thanks in advance for any tips and advice.
~Sass
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#2
RE: Hello and advice?
First you have been provided with what we call a brick. A machine that provides only compliance data and no information about the efficacy of your therapy.
I would work on exchanging the machine for a Resmed S9 Autoset, then get Sleepyhead software and learn how to observe your efficacy data yourself.
It sounds like your humidifier may not be set properly for your needs.
You also need to talk to your sleep doctor about your situation. Insist on getting some help.

Can you also share the results of your sleep study? You should have received a detailed copy including graphs showing what happened all through the study.
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#3
RE: Hello and advice?
Sorry I didn't think I needed to include my machine since it's in my profile. I have a ResMed S9 Escape Auto. I pulled the SD card today and am going to try and use SleepyHead to see what's going on, though, I am not sure I'll understand what I am seeing at first.

I did get the results of my sleep study, but because my oxygen levels dropped so much (55%), everything I did was on one night and the time in which I was using a mask was about 2 hours total, and some of that was finding the pressure. It was not a pleasant night, and I am not sure there's anything there that I can understand enough to pass on right now.

Regarding the humidity, it was set at 3 when I got it, and I can't do that even on pressure 4. I had to turn it down, because the heat makes my coughing a lot worse. I am still trying to find the humidity setting that works best for me, but the heat from 3 is too high, and 1.0 is too low.
Last night I tried 1.5 and tonight I'll go up to 2. I do understand I need more humidity but as it comes along with more heat, it's just more irritation to my throat and lungs right now.
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#4
RE: Hello and advice?
(11-30-2013, 11:57 AM)bwexler Wrote: First you have been provided with what we call a brick. A machine that provides only compliance data and no information about the efficacy of your therapy.
I would work on exchanging the machine for a Resmed S9 Autoset, then get Sleepyhead software and learn how to observe your efficacy data yourself.

Sorry I lack reading comprehension today. Thank you for this information, I have contacted my CPAP supplier and am waiting to hear back from them on Monday. Smile

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#5
RE: Hello and advice?
Hi sassafras, WELCOME! to the forum.!
I know you said that you wore the mask during the day without the machine, you might try to wear your mask and use your machine during the day while you read or watch TV so your body get used to both the mask and the machine. Your body is getting used to this "new" way of sleeping. It can take a while to get used to CPAP therapy, just stick with it, it will get better.
Hang in there for more suggestions and best of luck with your CPAP therapy.
trish6hundred
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#6
RE: Hello and advice?
Welcome sassafras, unfortunately it's a thing that takes time to get used to, you sound like you have the right attitude towards it which is a good start, try to relax as much as possible and be patient, even using it a few hours per night is a start. Have you checked with your GP that the bronchitis has fully cleared? Keep at it, you will get there.
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#7
RE: Hello and advice?
(11-30-2013, 12:53 PM)sassafras Wrote:
(11-30-2013, 11:57 AM)bwexler Wrote: First you have been provided with what we call a brick. A machine that provides only compliance data and no information about the efficacy of your therapy.
I would work on exchanging the machine for a Resmed S9 Autoset, then get Sleepyhead software and learn how to observe your efficacy data yourself.

Sorry I lack reading comprehension today. Thank you for this information, I have contacted my CPAP supplier and am waiting to hear back from them on Monday. Smile

I don't know a lot about the escape other than it is a brick that gives compliance info only.

Can you change the settings to manual and have the humidity at whatever you find works best for you and turn down the temperature too (not sure that the escape works this way or not....the S9's do).

Also, a suggestion. Could your FFM be causing part of your problem? Can you try a nasal mask or nasal pillows or the mirage liberty where it isn't as cumbersome as the FFM?

I was started out with the Quattro FX during my first sleep study and for almost 3 years, I had a very hard time with the mask and didn't get much help from the 3 DME's that I had used. They started me on a medium, when that was causing me problems and I was not getting any sleep and waking up every 1 1/2 to 2 hours, they switched me to a large cushion which was much worse. Finally, they switched me to a small cushion and headgear (the first 2 DME's said they couldn't get a small for me so I switched to a 3rd one that finally ordered them for me). Although the leaks were better, I still was not sleeping any better.

I have been using the wisp and love it. It leaks but it doesn't wake me up when it does and my AHI's are better than they have ever been. I couldn't stand the Resmed headgear but so far really love the headgear with the wisp (it is not the cloth one but the silicone one). I was told by the sleep center (and my DME confirmed this) that sleep labs should start us out on nasal masks rather than FFM but some don't. It is the first headgear that I have used that has been flat against my head as it is supposed to be!

I love not having a lot of stuff on my face like I did with the Quattro FX, the Quattro Mirage and the Amara Gel (the last 2 were miserable and leaked so badly that the leaks woke me up).

So, since you are talking to your DME on Monday, ask about a mask change and just see if that makes a difference.

Hope you get it all figured out. Ask questions all you need to. You will get answers and help from the members of this board.
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#8
RE: Hello and advice?
(11-30-2013, 04:02 PM)me50 Wrote: Can you change the settings to manual and have the humidity at whatever you find works best for you and turn down the temperature too (not sure that the escape works this way or not....the S9's do).

From what I can tell the humidity is controled by the H5i and to raise the humidity, you are raising the heat.

(11-30-2013, 04:02 PM)me50 Wrote: Also, a suggestion. Could your FFM be causing part of your problem? Can you try a nasal mask or nasal pillows or the mirage liberty where it isn't as cumbersome as the FFM?

Maybe for my next mask, but by doctor specifically ordered the FFM for me because I have a lot of congestion problems (allergic to everything!) and end up breathing through my mouth most of the time. Of course, this problem here lately could be related to being sick recently as well. If I continue to have problems, I will look into a smaller/lighter mask as well.

-------

Thank you all for the welcome and advice Smile
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#9
RE: Hello and advice?
(11-30-2013, 07:26 PM)sassafras Wrote:
(11-30-2013, 04:02 PM)me50 Wrote: Can you change the settings to manual and have the humidity at whatever you find works best for you and turn down the temperature too (not sure that the escape works this way or not....the S9's do).

From what I can tell the humidity is controled by the H5i and to raise the humidity, you are raising the heat.

(11-30-2013, 04:02 PM)me50 Wrote: Also, a suggestion. Could your FFM be causing part of your problem? Can you try a nasal mask or nasal pillows or the mirage liberty where it isn't as cumbersome as the FFM?

Maybe for my next mask, but by doctor specifically ordered the FFM for me because I have a lot of congestion problems (allergic to everything!) and end up breathing through my mouth most of the time. Of course, this problem here lately could be related to being sick recently as well. If I continue to have problems, I will look into a smaller/lighter mask as well.

-------

Thank you all for the welcome and advice Smile

If I understand correctly, you can change your setting to manual and you can set the humidity and the temperature. The temperature can be adjusted by turning the knob. Mine was preset to 80 but I have adjusted that for my own comfort.

I used a FFM b/c of allergies and my nose would get stopped up. I just started the nasal mask this week and one time, my nose was stopped up and I used my nasal spray and the problem was solved. This is what happened to me but may not work for you. YMMV
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#10
RE: Hello and advice?
I've exchanged my Escape for an Autoset this morning, and picked up a nasal pillows mask as well.
Here's hoping for a better night tonight. Smile
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