Struggling Newbie

[Koz]

Hello all,

I am a new user who had a great night during pressure test at the sleep center a week ago with nasal pillows and I was very excited about sleeping again. My AHI is 46 and my pressure is 11. Then, the first night came....

1st Night (Thursday) - Fell asleep easily, wife heard me snoring an hour later and found my mask (ResMed Swift FX) across my body. She says I put it back on but I don't remember it. Fell back asleep only to wake up again with the mask off. Put the mask back on and as I was drifting off to sleep, my mouth would open and it would startle me awake as I would be gasping for air. This happened a couple times and I finally took the mask off because the feeling of waking up gasping for air is not much fun.

2nd Night (Friday) - Spent the day looking for a full face mask locally with no luck and the company who delivered my equipment sent one out overnight to be here Saturday. Went to sleep with the nasal pillows only to be startled awake again gasping for air. Took it off and went to sleep.

3rd Night - Received the Phillips Respironics ComfortGel Blue full face mask and fell asleep but woke up an hour later and could not fall back asleep. The mask tended to leak easily and both masks have seem difficult to exhale. At 2am when I still had not fallen asleep, I took the mask off a went to sleep.

Last Night - Stayed up late so I could easily fall asleep but the leaking and the sensation of suffocating plus the difficulty in exhaling caused me to take the mask off again and go to sleep.

I used the ramp (at 4 for 20 min) for the first two days but it seemed like all I did was count down the pressure.

My C-Flex is set to 3 so that is the easiest for exhalation, right?

I will call the company today for a mask to replace my Swift FX as I have a 30 day return. Hopefully they can help with something a little easier to fit and exhale with.

The worst thing about all of this was my pure excitement to sleep after I slept so well during my pressure test.

Thanks for all of your help!
Koz

[Pugsy]

Welcome to the forum.
Which model machine do you have? There's a 3 digit number on the bottom of the blower...can you tell us what it says?
Once we know which model we can point you hopefully to some software. It's not showing up in your equipment profile...probably a broken line as we have had quite a few of those lately.

CFlex at 3 is the highest setting but not necessarily the easiest exhale relief. The amount of reduction that CFlex offers is based on the air flow or our own force of breathing. It's hard to describe but it's more of a rhythm than a set amount of reduction during exhale.
I suggest you play with each setting to see which setting feels the best in terms of your own respiration rate and use that setting.

Your pressure is 11 cm and you are using the ramp for 20 minutes. Are you adjusting the mask fit for seal at ramp 4 cm or at the 11 cm?
If you are having some issues with feeling like you aren't getting enough air during ramp time you might want to start ramp a little higher...say around 6 cm. Most people find that 4 cm pressure doesn't allow for there to be enough feeling of movement of the air.
I know we won't suffocate at 4 cm but it can sure feel like it.

[Koz]

Not sure what 3 digit number you are talking about but my machine is the PR REMstar Pro C-Flex+. Not sure why it isn't showing up in my profile as I have entered it.

I only used the ramp the first two nights and I still feel like trying to breathe and exhale is difficult. Feels like after I inhale, the pressure is so high that I cannot exhale what I took in.

[Stormynights]

The machine they test you with has the best EPR so you expect the machine you get will be like that but sadly it is very different.

[Pugsy]

Look on the bottom of the blower unit for a little sticker with an 8 digit number on it. That is year/month/date the machine was manufactured...sort of a born on date.
On the same sticker is a 3 digit number that is the model number. It may have DS or REF in front of the 3 digits.
If you have the PR System One Pro CPAP with CFlex...that is the model number 450.
If you have the PR System One 60 Series Pro CPAP with CFlex...that is model number 460.
The link to model 450 is broken...so if you have a 450 then just add it manually to your equipment comments section.
If you see model 460 on that sticker then you have the PR System One 60 Series Pro CPAP and the PR System One 60 series humidifier with heated tube (even if you don't have a heated tube at the moment).

The model 450/460 is a full data machine and there is software easily available to use to monitor therapy effectiveness.
See these threads
Pugsy's Pointers...software install tips viewtopic/t88972/Pugsys-PointersSoftwar ... hints.html
Pugsy's Pointers... understanding your data viewtopic/t88983/Pugsys-PointersSleepyH ... nding.html

I would suggest that you use the ramp for a little while until you get used to that 11 cm pressure. I would start it at 6 cm though and not 4 cm.
I would also suggest that you sit down and either watch TV or read a book while awake and use the mask and machine just so you can get used to it without the pressure of needing to get to sleep hovering over you. Let the brain get used to having the mask stuck on your face.

Get the software and let's see if we can spot anything on the software reports that might be contributing to wake ups or taking the mask off....like big leaks.
Or maybe those wake up times gasping for breath might be related to apnea events themselves...if the leak is real bad then there is a loss of therapy pressure which might allow apnea events to materialize.

There are mask fitting videos available. You did well during the titration sleep study...perhaps it is a fitting issue at home.
This link has videos for multiple masks.
http://www.cpaplibrary.com/masks.html

You can get the clinical/provider manual for your model machine (once you know exactly which model) here at this link.
Scroll down a bit to find the instructions on how to request the manual. You have to be specific as to which model you are using.
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

[Koz]

Thanks Pugsy! The number is 460P and I updated my equipment. I found a fitting guide for my mask and will watch some TV with it on tonight in the living room with the ramp set at 6cm. I do feel like the mental pressure to get to sleep is having an effect along with the thoughts of the first night problems of awakening gasping for air.

Since I only had 4 hours of sleep last night, all without CPAP, I am hoping I can get some good rest tonight. And if that means it is in the recliner with the CPAP, then so be it!

Thanks again!

[nanwilson]

Koz
It sounds to me like you are one of the ones that is persistent (stubborn ) enough to be a big success story. You are willing to do whatever it takes to get this therapy right.... super attitude, I congratulate you, you will be well on your way to success in short order.. keep it up.
And of course, WELCOME to the best darn sleep apnea forum on the planet.
Cheers
Nan

[markrisley]

First, the initial struggle for all of us is to find the right mask for our face. This can take awhile. Understanding this, prepare to be patient. During this process, you may actually go back to a mask you had previously discarded. Then you will deal with the leakage problems. It happens to all of us. Some a little, some a huge problem. I had a significant problem. I solved my problem by wearing goggles. Found them at CPAP.com. Problem solved.

[robysue]

An obvious question that nobody has asked: What kind of mask did you use on your titration study---the study when you work the mask?

If you didn't use Swift FX on the sleep study, then the first step is to try to use the exact make and model mask you were using on the sleep study. Or if you didn't use a nasal pillows mask on the sleep study, you should at least try to find a mask similar to the one you used on the study.

Lots of newbies have trouble with taking the mask off in their sleep. You are right to simply put it back on every time you or the wife wakes up and notices that it's not on your nose.

It appears you may be doing some mouth breathing. A FFM may help. Or you might want to try a chin strap first. Or you might want to consider taping your mouth. If taping is an option, do a lot of reading here to find out what works; taping does NOT involve slapping a large piece of tape across your entire mouth.

[Pugsy]

I am a new user who had a great night during pressure test at the sleep center a week ago with nasal pillows

Are you trying to use the same nasal pillow mask as you used during the titration study?
If so, you had success with it then and you should be able to have success with it at home.
Or did they give you a different type of nasal pillow mask or perhaps different size nasal pillow?

The nasal pillow type of masks are normally the easiest to git and get a good seal and keep it simply because there is less surface area to have to worry about sealing.
Most common problem is that people at home either have the straps way too tight or they are using the wrong size nasal pillow.

If you are opening our mouth and air is trying to exit the mouth that means that the tongue isn't doing a good job of blocking the airway entrance into the mouth. Sometimes people get chipmunk cheeks...lips are closed so when the tongue relaxes the air goes into the mouth and the cheeks inflate and eventually the lips will open.

[dwrek]

Sounds like you are getting a lot of sage advice so far and you have a good attitude. For most people, we stumble out of the gate for various reasons. Don't give up.

So here are some thoughts from someone not so far over the hump himself.

On the upside, it sounds like you are getting at least a few masks to try and the Comfort Gel you have now is a good starter mask - that was my first. It is good to try to get a few to try while you are in the period where you can get multiple masks and not pay additional costs.

One thing I think the other posters are trying to convey is that you need a baseline to start from and going back to your original mask and titration configuration is the best place to start. You may need the full face mask but you should try to stick it out for a bit in the original setup as your mind (conscious and unconscious) has to get used to the whole arrangement first before you do a lot of fine tuning.

If you are still struggling getting it going your Doctor/DME should be able to help, but try the settings/masks for several days after each change before making another change. I must emphasize you need to find a setting/mask and hunker down early on even if it is not optimal as the equipment and its setup is not really the first hurdle to clear. Getting used to the therapy and sleeping with your new best friend is.

If you can, isolation can be helpful. If you have spare bedroom, lock yourself away, get a noise maker, blackout curtains and tell you spouse not to wake you unless the house is on fire.

Read the posts on here and you'll see that this is a long haul exercise and it takes most people a few months to get it rolling and then a good while longer to get it all dialed in. Don't be discouraged by that, because at some point, you will wake up and feel better and all the aggravation will seem trivial.

The biggest enemy you have is your mind. Don't focus on anything except just trying to keep the mask on for as many hours as possible. Your mask will leak. You will take it off in your sleep. You will sneeze in it and want to take it off. You will roll over and get the hose wrapped in some uncomfortable way. You will wake up and worry about compliance. You will think that the machine is not working properly. You will wake up and find your mouth completely dry. Your bed-mate will get irritated by the noise and or blowing air. You will wake up with one cushion in and one out. You will count the breaths. You will hear the machine. You will wake up dreaming that you are drowning. You will doubt it will ever work.

And then, if you tell yourself to ignore all that and many other things, you will wake up one morning having slept with it on all night and never waking up. Eventually, that becomes the norm and for most who make it that far you will actually feel better. You may change masks and settings many times before you get there but those are not as important as teaching yourself to just relax and let the CPAP do its job. Good luck.

[Koz]

The biggest enemy you have is your mind. Don't focus on anything except just trying to keep the mask on for as many hours as possible. Your mask will leak. You will take it off in your sleep. You will sneeze in it and want to take it off. You will roll over and get the hose wrapped in some uncomfortable way. You will wake up and worry about compliance. You will think that the machine is not working properly. You will wake up and find your mouth completely dry. Your bed-mate will get irritated by the noise and or blowing air. You will wake up with one cushion in and one out. You will count the breaths. You will hear the machine. You will wake up dreaming that you are drowning. You will doubt it will ever work.

Thank you! I think that is probably exactly what I needed to hear. All of the advice has been helpful and comforting and I greatly appreciate everyone's input. I will try going with my original set up with nasal pillows, Swift FX(still have not found out what they used in my titration), I set my ramp to 6cm and will kick back in the recliner tonight with the machine on and try to get used to it.

Thanks again everyone!!

[SeekSleep]

I'm only 4 months or so into this, but I found the folks on this forum to be a great support team. I'm still playing with my mask. The only one I can get to seal well tends to trash my nose because I have to tighten is way up. I buy the large bulk moleskin sheets and make nose bridges to help there. It also helps keep the mask from blowing in my eyes.

What worked for me is just continually telling myself if others can do this, I can too, and I didn't ever allow myself any slack. If I'm going to sleep, it's going to be with the mask... I've only taken the mask off a few times in my sleep, and always woke up and put it back on. One time what woke me up was the burning in my arm. Seems I was flat on my back. arm sticking straight up, holding my mask straight out in front of me, and judging by how my arm felt it had been that way for a bit. Chart showed I had the mask off approximately 1.5 hours, how long it was held out away from me, and more importantly what I thought I was doing is a mystery.

I experienced the moments of panic, feeling of being unable to breathe, and even a little mild soreness of the rib cage when I started on Bipap. Fortunately, I got used to it quite rapidly though, and none of it was ever bad enough to make me discontinue treatment. Now I'm pretty excited about how it has all gone as I've experienced a big improvement in the way I feel.

For me, the machine has been sort of like starting up an exercise routine after months of inactivity. While in ways you might feel better right away, it will also hurt and tend to make you want to give it up. After a few months though, you can't imagine going back to the way things were.

Hang in there, it can and does work for many, and you'll see countless examples on this forum of success stories.

[Koz]

Still no luck using the machine. Tried sleeping in the recliner and while initially dosing off, I would gasp for air and become aroused to the point of being wide awake with anxiety. All I could think about during dinner last night was having to put the mask on and use the machine. I basically stressed out about it all day. After laying down and starting the machine last night in bed, and after being very sleepy on the couch, I immediately started sweating and became fully awake. I took the mask off, spoke to my wife about my frustrations, and made a conscious point of sleeping on my side. My wife told me I slept soundly and did not snore like a freight train. I have called the Sleep doctor to set up an appt to talk but I am waiting on a call back from the manager and it might be a couple weeks before I could see the doc.

The two positives of this experience is the motivation to lose weight and to stop drinking alcohol, as my alcohol induced apnea is usually pretty bad! Never really thought of this before but my wife told me to grab a 5lb bag of flour to carry around and to ask myself if that would make a difference to lose.

Thanks for all the support and I will keep you updated on my situation.

Koz

[49er]

Hi Koz,

Perhaps instead of fighting the anxiety as it sounds like you are doing, simply accept it for what it is. When you start stressing, simply say something like this to yourself, "Yup, I am nervous about wearing the mask tonight, perfectly understandable feeling. But I am still going to do it anyway." I know everyone is different but it has just been my experience that when you don't fight the so called unacceptable feelings that they don't have as much power over you.

By the way, for what is it worth, one of my favorite posters on an insomnia board has taken this type of attitude and seems to doing better than alot of posters are. Of course, there is probably more to the story but I wanted to give an example of why simply accepting your feelings without fighting them might be helpful.

Hang in there.

49er

Still no luck using the machine. Tried sleeping in the recliner and while initially dosing off, I would gasp for air and become aroused to the point of being wide awake with anxiety. All I could think about during dinner last night was having to put the mask on and use the machine. I basically stressed out about it all day. After laying down and starting the machine last night in bed, and after being very sleepy on the couch, I immediately started sweating and became fully awake. I took the mask off, spoke to my wife about my frustrations, and made a conscious point of sleeping on my side. My wife told me I slept soundly and did not snore like a freight train. I have called the Sleep doctor to set up an appt to talk but I am waiting on a call back from the manager and it might be a couple weeks before I could see the doc.

The two positives of this experience is the motivation to lose weight and to stop drinking alcohol, as my alcohol induced apnea is usually pretty bad! Never really thought of this before but my wife told me to grab a 5lb bag of flour to carry around and to ask myself if that would make a difference to lose.

Thanks for all the support and I will keep you updated on my situation.

Koz