New user - so despondent and frustrated and feeling sick

[queenbee125]

I hope some of you seasoned and long-time users can help me.

I have had my CPAP machine (resmed s9) for 3.5 months. After many years of being misdiagnosed with supposedly sinus and allergy problems which was supposedly the cause of my terrible morning headaches, I finally had a doctor diagnose sleep apnea. When I first got the CPAP machine, it seemed to help the headaches somewhat. Although I have had problems finding a mask, the nasal mask I have been using (airfit n10) seemed OK except for it blows air on my face and also I was keeping my mouth open sometimes but I assume that it's something I need to train myself to do - keeping my mouth closed.

It seemed to be going moderately well. my headaches were improving. And then approximately 3 weeks ago, something changed. It seems that my machine is blowing cold air. It does not seem humidified or warm. (I am a very new user so I don't know what it should feel like in terms of air temperature in the mask). When I have tried the regular tubing and tried changing the humidity settings turning it up to the highest, and I have also use the Climate line tube and and turned the temperature on the way up. (The humidity was at highest last night and my mask was very wet earlier this morning). My mouth has been very dry every time I wake up during the night during this time since the air seems to be blowing cold. I thought maybe I was keeping my mouth open with using the nasal mask so I tried using a full face mask last night. I woke up this morning with another headache and lots of air in my stomach! I did some searches about getting air in stomach on this board but I didn't find anything about that. Is that something that is usual or unusual?

I will be calling my DME company today but I had some questions for you (they are frustrated with me because I have had a lot of trouble with finding a mask that works so now I think that they will think I am finding yet more problems.... )

• Is it unusual for such a new machine to have something wrong with the humidifier? It seems that the water level is going down but when I take out the water tank it is just very lukewarm underneath, not hot. The water level is going down slowly, it only uses about half a tank even though I have the humidity and temperature turned all the way up.
  Is the water tank supposed to be hot underneath?
  Is it usual to get air in your stomach with a full face mask?
  Have some of you manage to use a nasal mask and learned how to keep your mouth closed - I assume so since a lot of those are sold. ( I tried taping my mouth shut a couple of nights but that didn't work).

I really hope I can get this all figured out. I have felt really bad / sick every morning for the last couple of weeks.

[JDS74]

Welcome to the forum.

A couple of housekeeping things first.
Could you post your equipment? There is a link on how to do that in my signature block.
When you do, please select TEXT as the display mode as many machines look alike.

Could you also post your pressures? Knowing how your machine is set will help in getting advice on your questions.

So, air in your stomach as a result of CPAP therapy is called aerophagia. Searching on that term will get lots of information.
The humidifier tank should be warm to hot in the morning depending on how long since it was in heat mode so that sounds normal.

Having water in your mask in the morning can be from a too high humidity setting or from a too cool room temperature. It is a result of condensation. I use a hose insulation wrap around my heated hose to help control this.

Things you should think about doing:

Get a copy of your sleep study reports especially the titration study. They will help you understand the details of your treatment - really recommended.
Get a copy of you prescription for CPAP equipment and supplies. This will allow you to get supplies and masks from other than you DME in case you decide you want to do that - highly recommended.
If you don't have a pulse oximeter, get one. I use the CMS50F from the PulseOxStore. It costs more but is very much more comfortable. It will allow you to see if, in spite of your treatment, you are having desats leading to morning headaches - recommended.
Get a copy of reporting software so you can better manage your own treatment. Two programs are available for ResMed machines - ResScan and SleepyHead. Both will run on Windows machines, only SleepyHead will run on Macs - extremely highly recommended.

Best of luck in your treatment.

[Nick Danger]

Queenbee, most of the ideas we have will be guesswork until we know more about your machine and mask.

Aerophagia is not unusual with a full face mask (FFM) especially at higher pressures. I am a mouth breather and use a chin strap with my nasal pillows mask to help me keep my mouth closed. Before I started using the chinstrap, my mouth would get so dry that my throat hurt and I couldn't swallow. Some people also use a chinstrap with a full face mask to cut down on dry mouth and aerophagia.

We'll be able to say more when we know more about your machine.

BTW, it took me several months to become fully comfortable with the machine. Now I can't fall asleep if I'm not hooked up. Some of us just adapt more slowly than others. Don't give up - everybody on this board has dealt with living with sleep apnea. It is very likely that several people on the board will have dealt with whatever obstacle gets in your way - their solution may not work for you, but it may give you ideas of what to do.

Welcome to the forum and good luck!!

[webbie73]

It seemed to be going moderately well. my headaches were improving. And then approximately 3 weeks ago, something changed. It seems that my machine is blowing cold air. It does not seem humidified or warm. (I am a very new user so I don't know what it should feel like in terms of air temperature in the mask). When I have tried the regular tubing and tried changing the humidity settings turning it up to the highest, and I have also use the Climate line tube and and turned the temperature on the way up. (The humidity was at highest last night and my mask was very wet earlier this morning). My mouth has been very dry every time I wake up during the night during this time since the air seems to be blowing cold. I thought maybe I was keeping my mouth open with using the nasal mask so I tried using a full face mask last night. I woke up this morning with another headache and lots of air in my stomach! I did some searches about getting air in stomach on this board but I didn't find anything about that. Is that something that is usual or unusual?


Don't despair. Cpap use is a process. We all adjust at different rates. A couple of things, is your humidifier set to auto mode or manual? With auto mode the humidifier does not run all the time. It is driven by the temperature and humidity in the room. It clicks on and off during the night, much like your house's heating system. Try manual mode and begin experimenting with the settings all over again. Try 3.5 and set the temperature close to the room temperature to see if that helps. From there you can go higher. Now that the seasons have changed I had to adjust both humidity and temperature.

[Starlette]

Welcome to the forum, I have prepared a welcome wagon just for you: Hot chocolate milk and chocolate chip cookies, and peppermint schnaaps for flavoring. NOTE: You will be carded since alcohol is provided. When you arrive, please sign in (your login name) so we'll know you stopped by. Then my post will return back to the top of posts for other newbies to stop by for a treat.
Newbie Welcome Wagon

Enjoy!
Starlette

[queenbee125]

Thanks for the info all. I couldn't get back to this post sooner - been a crazy week at work! I appreciate the help and advice.

[Tatooed Lady]

I'm not familiar with the Resmed machines, but the Phillips has a removable humidifier tank, it slides out only when the cover is open. If I turn on the humidity, there is a metal warming plate under the water tank that gets progressively warmer as the humidifier settings get higher. My first check, if I wasn't sure it was working, might be to run the unit with humidity on high or run the tank preheater a few minutes, take the water tank out and feel for heat radiating from this area. If it's cold, recheck connections and settings. Still cold? Figure it's broke, get a hold of the DME. But that's just my thought process...

[tortoisegirl]

With my S9, yes, it also doesn't ever get hot, but warm, and the temperature adjusts accordingly up & down. That is just how it is. I too would have expected it to feel warmer to the touch. Water usage will depend on ambient temperature & humidity, but I too only use about half a tank even on max temp & humidity. If the air used to feel warmer and you have tried turning the temperature up to no avail, then yes I would contact your DME. Another test would be to turn the temperature down and see if it feels cooler, so at least you know if the heat is working. I can say though that even the max of 86 deg F doesn't feel hot to me and I would prefer it even warmer (as well as more humid...I always max it out at 6).

Note there are two modes for temperature & humidity on the S9. They typically start you with Automatic mode, where you adjust the temperature only. There is also a Classic mode (you can turn this on in the Provider Menu) where you can select both temperature and humidity. The Classic mode is more likely to cause rainout though if you select an incompatible temperature and humidity.

Some folks get Aerophagia with CPAP. I haven't, so can't give you specific tips, but there are some good discussions on what to try. If you aren't able to resolve it, definitely talk to your doctor, as they can try to adjust your settings (reduce your pressure) or even try a different type of machine (Bilevel).

[Nick Danger]

It might help to download the Sleepyhead software and then read the data the machine has stored on the card. That won't tell us anything about the humidifier, but it will give us some information regarding how the therapy is working from a numbers point of view.

[princessbelle]

.

[queenbee125]

So I am REALLY thankful for all this advice, and have been slowly going through what you all suggested.

I added all my info in the control panel (JDS74
And got my sleep study results.
Went to see a sleep doctor (neurologist). She is recommending a different machine. Apparently the S9 escape doesn't store all the info I need.

Pulse oximeter - I will get one, great idea. Are there any that attach to a phone so that results can be stored on the phone?
And thanks for the software suggestion..... Phew - so much to learn about all this.

Thanks... still got more homework to do.

Welcome to the forum.
Could you post your equipment?

Get a copy of your sleep study reports especially the titration study. They will help you understand the details of your treatment - really recommended.

Get a copy of you prescription for CPAP equipment and supplies. This will allow you to get supplies and masks from other than you DME in case you decide you want to do that - highly recommended.
If you don't have a pulse oximeter, get one. I use the CMS50F from the PulseOxStore. It costs more but is very much more comfortable. It will allow you to see if, in spite of your treatment, you are having desats leading to morning headaches - recommended.
Get a copy of reporting software so you can better manage your own treatment. Two programs are available for ResMed machines - ResScan and SleepyHead. Both will run on Windows machines, only SleepyHead will run on Macs - extremely highly recommended.

Best of luck in your treatment.

[queenbee125]

Thanks for all the info and encouragement !!!!

[Wulfman...]

It might help to download the Sleepyhead software and then read the data the machine has stored on the card. That won't tell us anything about the humidifier, but it will give us some information regarding how the therapy is working from a numbers point of view.

According to her profile, she's got a non-data-capable machine ("brick"). If it's correct information, it won't tell her anything but the hours used.


Den

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[Sir NoddinOff]

About your humidifier not seeming to work anymore: I don't know where you live but your apt/house heating system has probably started kicking in due to colder winter weather - that could easily change the way your humidifier is cycling on and off. The unit has sensors to determine humidity and temperature, so maybe that explains the change in perceived operation. For a test, try turning off your house heating at night and see if your nearly new CPAP goes back to the way it was running before... a simple test to get you on the right track. Just a thought.