Newb, 6 days & 2 masks

[ChiefC]

First post. Sorry it's going to be a little long. I have read over a hundred on this site and it appears most newbies don't give enough info with there problem, so ill make a short story long.

It has been a few years since I had my sleep study completed and I finally decided to use a CPAP as recommended. The place I got my machine and mask decided that since it has been a while since my sleep study the would set me up with an APAP with it set from 6 to 19. Then after a couple of weeks they would read the machine and decide what the correct settings should be. My doctor had to approve this.

They gave me a Resmed Mirage FX mask, and a Respironics Remstar Auto Aflex with heated humidifier ( set on 3).

Everything worked great at their office sitting up. It was a little difficult breathing (seamed like I wasn't getting enough air) but he told me that was normal.

So that night I kept it on all night (6 1/2 hours) but I was up all night with a clogged nose. I used Afrin nose spray and a nose strip to help. Slept like crap but was ok the next day, I think the air helped.

Morning two: called the office and told them the problem and the told me to raise humidity to 4.

Night two: took Afrin nose spray again. Helped a little bu ended up taking the mask off at 2am because I couldn't breath. A soon as the mask came off nose cleared up. Called office and they said they had to get the doctor to approve it so insurance could pay.

Night three. Afrin again and ended up taking mask off after 2 hours because nose was clogged. Nose cleared up quickly after that.

Night four: didn't even consider the mask

Next day went to office to pick up full face mask. They gave me the Resmed Mirage Quatro. No where near as comfortable but when I layed down my nose didn't clog.

Night five: went to sleep ok. It took awhile ( a setting of 6 to start with seems low). Woke up in the middle of the night with a slight panic attack. The air was blowing really hard and I couldn't breath. Air was blowing out of the mask all over, top and both sides. I must have been sleeping good because I couldn't figure out how to unhook the mask so I ripped it off of my head. After I settled down I looked at the machine to see what setting it was on and couldn't tell because it was to dark and I didn't want to turn on the light and wake up my wife. I put the mask back on and tried to seal it and resume breathing. The air was blowing to hard so I restarted it. After super high flow level 6 was real hard but I eventually got used to it. A little later the super high pressure woke me up again. This time I reached over and reset the machine. I felt like I wasn't getting enough air at level 6 so I took the mask off and shut the machine off and went to sleep.

Morning six: read this site for a couple of hours.

Night six: tightened up the mask till I could just barely stand it. Went to sleep and woke up with same super high air with th mask leaking similar to night before but not as bad. This time I didn't panic, but I did turn on the light to see the level, it was 18 point something (I think18.6). So I layed back down and tried to withstand the level and see how long I would take for it to drop down to normal. Not sure how long I lasted a few to five minutes I think. It never dropped so I restarted the machine. Level 6 was way to low and I couldn't handle it so I took it off.

Morning seven: lungs were uncomfortable for the first hour. Frustrated enough that I am writing this long post looking for suggestions.

When I went to set up my profile it asks what software I use. How do I find out?

[Pugsy]

Look on the bottom of your blower unit and tell us the 3 digit model number.
If the humidifier still has water in the tank remove the tank first.

Tell us the model number and we will point you to the software that you can use and see if you need anything else to go along with it.
See this thread for help in figuring out your exact equipment. Right now the humidifier you have chose was discontinued back in 2007.
viewtopic.php?f=1&t=72302&p=665165#p665165

Regarding nasal congestion...do a little experiment. Take your fingers and press gently against the nasal bridge area where the mask rests.. Gentle pressure about like what would happen with the mask being tightened a bit.
Give it a few minutes...does your nose stop up and become congested?

Check my signature line for your software options. Once we know for sure which machine you are using we can pinpoint which version might be best suited for you.

Sounds like you have a lot going on. Mask being a big issue and likely the minimum starting pressure.
Once we know which machine that you are using I can get you pointed to the provider manual for it.

[tbinbny]

soon as the mask came off nose cleared up. Called office and they said they had to get the doctor to approve it so insurance could pay.

Do you mean that they wanted to give you a different mask but they needed to check with insurance first? Not sure what you meant with that part.

I think you need a tighter range for pressure and a decent mask. I use the Quatro FX full face mask and that really seems to seal well if you read the directions. I don't have to have it too tight. It pretty much seals itself with the airflow, so tightening the mask has little effect on how well of a seal you get, so you don't have to squeeze your brains out of your head. LOL.

Anyway, I think all you need is a better mask and a tighter range for the pressure, and maybe some practice for a half hour or so here and there during the day to get used to it.

In your detailed post, I didn't see that you called the DME to tell them about waking up from the high pressure yet? If not, maybe you should and see if they would suggest tightening that range some. I am just a newbie too, so someone who knows better may have different advice, but that is what I would say. The good news is that it sounds like you are determined to get this to work and that you have a great attitude, and I think that is over half the battle. Good luck getting it right!

[Nooblakahn]

+1 for the quattro fx. If you have to tighten the mask down as tight as it seems you are describing it is the wrong mask.

[Julie]

Many people (like myself) find that using the humidifier (especially at a high setting) makes them congested when they otherwise weren't. And the humidifer is only for your comfort, not 'therapy', so you should try turning it way down or even off for a couple of days and get off the Afrin, which is dangerously addictive.

[cobra4x4]

I second what Julie is saying, turn down the humidifier. Try the humidifier on say 1 and see how it goes.

As far as the mask goes, It is the hardest and most important thing to get right. You will need to experiment with different ones and various tightening settings because each one is unique in its characteristics.

[khauser]

I had similar problems with the nose clogging ... my recommendation is that if you aren't a mouth breather (or can control it with a chin strap) try nasal pillows. Every non-pillow mask I've tried causes that feeling with me ... I think it's just have extra pressure in the nose vs outside that helps. But if I don't have pillows I am very likely to experience a clogged nose and feel like I can't get enough air. I would have been extremely non-compliant without pillows. I have a high pressure setting too and the DME was convinced I wouldn't adapt to pillows (probably because they don't know how to set them up).

Another option (that I have NOT tried) is a hybrid mask, which does pillows and full face. I don't know if it'll solve that problem though...

[ChiefC]

Answers to a few comments:
The bottom of the machine: REMstar Auto, DOM
REF 560P
So I assume the number code is 560
The front cover says REMstar Auto A-Flex

The humidifier says System One Heated Humidifier

The company I get my supply's from wont do anything without my doctors approval, then they checked with insurance I think.

I didn't call the DME because it was Saturday and they were closed.


I had surgery for a deviated septum 25 years ago and my nose is still not right. Pressing on the bridge of my nose laying down clogs it. After the RESMED Mirage FX didn't work I tried the Quatro FX full face, but when I laid down my nose stuffed up. So they gave me the Mirage Quatro. The mask may be the problem but I think it's a pressure issue. But I don't really know, just frustrated.

[Pugsy]

PR System One 560 model...you can use SleepyHead software but you will need the 60 series patch.
I have SleepyHead information in my signature line and here's a link for information on how to do the Patch file.
viewtopic/t83551/SleepyHead-Series-60-Patch-Avail.html

You can also use EncoreBasic software
Look in Uncle Bob's signature line for where to find it.
memberlist.php?mode=viewprofile&u=38643
Be sure to read the Help section because it tells you how to use the software.

EncoreGuide link this will show you examples of what you will see. For a different machine than yours but the basics are the same.
http://www.healthcare.philips.com/pwc_h ... _Guide.pdf

Some people will find that their nose gets immediately congested with just the least little amount of pressure on the turbinate area of the nose. So any mask putting pressure on that area causes congestion. Remove the mask and it clears up immediately...sounds like that is happening in your situation. I can't wear any mask that puts pressure on the bridge of my nose for this very reason. Tried over the nose mask during the titration study and within 5 minutes nose totally plugged up and removed the mask and could breathe easily withing 2 or 3 minutes.
So you may need to look at a mask that doesn't put pressure on that area of the those.

[ChiefC]

PR System One 560 model...you can use SleepyHead software but you will need the 60 series patch.
I have SleepyHead information in my signature line and here's a link for information on how to do the Patch file.
viewtopic/t83551/SleepyHead-Series-60-Patch-Avail.html

You can also use EncoreBasic software
Look in Uncle Bob's signature line for where to find it.
memberlist.php?mode=viewprofile&u=38643
Be sure to read the Help section because it tells you how to use the software.

EncoreGuide link this will show you examples of what you will see. For a different machine than yours but the basics are the same.
http://www.healthcare.philips.com/pwc_h ... _Guide.pdf

Some people will find that their nose gets immediately congested with just the least little amount of pressure on the turbinate area of the nose. So any mask putting pressure on that area causes congestion. Remove the mask and it clears up immediately...sounds like that is happening in your situation. I can't wear any mask that puts pressure on the bridge of my nose for this very reason. Tried over the nose mask during the titration study and within 5 minutes nose totally plugged up and removed the mask and could breathe easily withing 2 or 3 minutes.
So you may need to look at a mask that doesn't put pressure on that area of the those.

Thanks for answering!
I think the quatro will work since my nose doesn't appear to clog with it.

Here is another newbie question regarding software. Is this software for my computer so I can see the data from my sd card or is the software for the machine to make it operate better?

[lilly747]

The software is for your computer. It alows you to download the information from your SD Card which is in your CPAP.

[Janknitz]

Software is for your computer so you can read the data.

See "Taming the Mirage Quattro" in my signature below for fitting tips. You should NOT need to crank down tightly on the mask, particularly at the top.

Your pressures sound like they are increasing either because your mask is leaking in the first place OR because as the pressure increases, the mask springs leaks. Let's see if Pugsy can tell you how to run a mask fit feature on your machine, I think there is one on the newer PR machines. It raises the pressure to its highest setting for a few minutes so you can fit your mask at that pressure. If there is no such setting, then we can tell you how to go into the clinician's menu to temporarily set your machine at a high setting for the purposes of mask fitting, then change it back to the current settings.

DO NOT take more Afrin. Afrin has a "rebound effect"--it relieves congestion in the short term, but in the long term it causes "rebound" congestion. The longer you take it the worse it is, and I can tell you as one with experience how awful it is to wean yourself off it. 3 days is the MAX, and I will NEVER take it again, EVER! That was a horrible experience.

You may have to play with your humidifier up or down to find the "sweet spot" that works for you. If my humidifier is too high, I get congested. Paradoxically, when I'm fighting off allergies or a cold, I crank it way up and get great relief. But if I forget to turn it down again after the cold or allergies have passed, it's bad news.

[Pugsy]

Check your private message box for a link for the provider manual for your machine which should explain mask fit feature.
My machine doesn't have it so I don't know what to tell you to do but the manual does.

Check out my signature line for PR S1 software options...you will see some examples.

[SleepWellCPAP]

Hello ChiefC,

Excellent post! Plenty of detail.

If you dial to "info", you should be able to access the 90% pressure, if I remember right, on that machine. If you think 6 feels low, maybe ask the doctor if he/she would agree with setting your machine to that pressure, and see how you do.

The funny thing, I suppose not so funny if it's waking you up, is that unless you limit the top pressure appropriately on an autoset machine, sometimes they can be very problematic. Sounds like your machine was autoadjusting to correct flow limitation caused by sinus issues. The more pressure it gave you, the more stuffed up you got, more stuffed up, more pressure, on and on. Now you're cranking down the tension on the straps. A suggestion might be to limit the pressure spread.

Good luck! Please keep posting progress, it will be very interesting to see how this resolves for you.