Could use some encouragement...

Hello. I am crying from exhaustion and frustration as I write this, so please forgive any poor grammar. I am a new CPAP user (coming up on 3 weeks). I was diagnosed with moderate sleep apnea. My AHI was 8/hr, but my RERA was 12/hr. CPAP is not going well for me. Getting over the emotional shock of having to wear a mask to bed while being 30, athletic, and single was tough, but I did and I became excited to maybe feel rested, not have a constant headache, and rid myself of my foggy brain. For the first week, I tried the ResMed Nasal Pillow for her mask, and I got over five hours of sleep most nights- a two hour improvement for me (I track using my fitbit which I know is not really reliable, but it spurred me to see a doc and when worn during my sleep studies matched my results surprisingly well). That mask ended up causing my nostril to break out and bleed where the silicone touched it. To give my nostril a chance to heal, I tried the ResMed Nasal Mask which was great for a couple of days, but I soon developed an unsightly, painful sore on the right side of my nose right under the cushion again. I tried the Philips Nuance Pro gel pillows for the past couple nights but it was too uncomfortable to make it through the night. So I have been using the Wisp Nasal Mask. It isn't nearly as comfortable, but no unsightly sores so far.

The reason for the tears though- I am back to sleeping 4 hours. Last night was barely over 3 hours. It's so totally depressing to have gone through all the testing and trials and to be right where I was before. I can't function and I feel terribly. I know I open my mouth, and I tighten the chin strap uncomfortably tight to try and stop that. I don't think I could stand taping as it took two weeks to stop randomly taking the mask/chin strap off in my sleep. Because of this claustrophobic feeling, I don't think anything with a forehead brace would work for me psychologically. The only full face mask my DME has that does not have the forehead piece is a ResMed- and I'm worried that I'll have these awesome bloody sores all over if I try that one. I also worry that if I start with a full mask, I'll never be able to train myself to downsize in the future.

I am just so very down because of this. I perhaps got my hopes up too high, but I didn't think that after three weeks there would be zero improvement. Does anyone have any advice? Or has anyone have a success story after a rocky beginning? I could use some light, because the tunnel seems never ending right now.

Thanks.

Please fill out your profile with the specific equipment and settings (pressure and humidifier) you have and are using,


Den

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I have done so under the "user control panel," selected "yes" to display to other users, and chose text instead of pictures (I saw that asked of other users when I've been lurking). I am not sure why it isn't showing up. I use the Phillips REMstar Pro C-Flex + at a pressure of 8, the System One Heated Humidifier, and have had the mask carousel listed above.

Welcome to the forum.. You are in a good place here.. Lots of smart people and helpful people here.

I also hate masks with the forehead support. I am a mouth breather so I have to use full face mask.
I found a mask called Zzz-Mask Full Face made by ProBasics. Compared to the Resmed or Respironics masks it is half price.
The replacement cushions are also cheap compared to the others. This mask works well for me, but every one is different.
That is the hardest part of this therapy is to find the mask that will work for you. This sites sponser sells it most of the time for
$79.00 sometimes they run specials.

Every one results from therapy is different I was diagnosed severe and I stupidly left it untreated. Good news is I felt results
immediately..


I wish you well

Did you click on submit after you chose your equipment? I have to ask

Let's back up and figure out exactly which machine you have. If you chose the PR System One Pro CPAP with CPAP that is a discontinued machine and that link isn't working but the PR System One Humidifier link should work along with the mask link.

Look on the bottom of the blower unit for a 3 digit number. It likely will have DS or REF in front of it.
Since you mention the Pro CPAP likely either the 450 (that's the discontinued model 2 years now I think) or the 460 which is the latest model.

If it is the 460 model then you need to choose these models
PR System One 60 Series Pro CPAP (disregard the fact it doesn't mention CFlex because all the Pro models have CFlex)
and the humidifier choice would be
PR System One 60 Series heated tube humidifier with heated tube (even if you don't have the optional heated hose)

If you have the model 450 then you have to just manually add the PR System One Pro CPAP model 450 to the comments line...see how I have my back up machine noted in mine.

Don't forget to click submit.

There is software available with either model machine...let's use it to see what might be going on in terms of therapy or leaking.
The mask thing is probably the hardest part of this therapy and made worse when masks cause abrasions and sores...no mask should ever do that and when they do the primary cause is poor fitting...either wrong size, too loose or too tight or simply not the right mask for a person's face.
It's extra difficult to get decent sleep when we have pain or sores caused by masks and then add the additional stress to an already stressful situation and that's a recipe ripe for insomnia.

Sit back, take a deep breath and remember all this can be sorted out and what you are experiencing, I guarantee you that you aren't the first one to have similar problems and you won't be the last. They can be sort through...may take some time and some work but it can be done.

Was your first mask that you tried the Swift FX for Her nasal pillow mask? That normally is a great mask and for it to cause the problems you experienced...something was definitely wrong with the fitting somewhere.

Go to Walmart or your local pharmacy and look for a product call Lansinoh lanolin ointment/cream...it's normally found in the baby aisle at Walmart along with baby bottles and nipples...nursing mom's use it for chaffed nipples due to breast feeding. Get it and apply it liberally during the day to help heal the sore nose. Use a tiny bit at night...too much and your body heat causes it to melt too much and then things will slide all over you face...I did that once and woke up with my nasal pillow blowing air into my ear.

For right now don't add the stress of worrying about "having to go to a full face mask" at this time. You might or might not but let's cross that bridge if and when we need to. I fully understand someone not wanting to and I don't care what the reason is....I will try to help them use the mask that want to use but if the software tells us that we have failed with all options to keep the mouth shut...I won't mince any words about telling you that "this isn't working so you need to try the FFM"....but right now we don't know if it is working or not so let's not go adding stress right now. Time for that worry later if we need to confront it.

Question for you...can you normally breathe through your nose just fine most of the time?
If you mouth breathe...is it out of habit or a physical need due to chronic congestion, allergies, deviated septum?
I thought I was a mouth breather for sure...come to find out it was just habit. It wasn't an easy habit to break and I haven't totally eradicated it but now it rarely presents any serious impact to my therapy ....so since I don't want to use a full face mask either...I don't.

Check out my signature line for information on the software available but go get this one
https://dl.dropboxusercontent.com/u/978 ... OpenGL.zip
SleepyHead 0.9.6 testing
It doesn't have the installer yet which means you have to unzip and open the folder to find the application.exe file to open it. If you run into trouble let me know and I will give you more specific details.

Welcome to the forum BTW. So sorry things are being so difficult for you but we can get through it. Lots of good people here to offer support and ideas....and sometimes a good swift kick in the butt too if need be.

Welcome to the forum.

First, try again at the User Control Panel. I know you are frustrated, but this is important. To get the model number of your machine, first remove the water tank, then look on the bottom for the number. That will tell us if you have a data capable machine. The data can help us to try to see what is happening with your therapy.

Finding the right mask can be hard, especially for a new user. Which ResMed pillow mask did you try? There are many different ResMed & Resperonics as well as other brands. If you don't know which one, go to cpap.com & browse to find exact which ones you have tried. The Nuance is a fairly gentle mask & works great for some people, but not for me & it appears not you either.

If you are a mouth breather, you can use a chinstrap & try to train yourself to keep your mouth closed. Some people here have done that. I had a major mouth breathing problem & when I began some orthodontic work, I'm wearing trays (Invisalign) so I now keep my mouth closed. Many people learn by keeping their tongue on the roof of your mouth. This can allow you to get comfortable with a nasal or nasal pillow mask.

If you are willing to try a FFM, most now work on the air inflation principle, which if done right should not leave marks or sores. The Quattro FX is popular and the new ResMed AirFit F10 is becoming quite popular too. My hubby is using he F10 & is having no leaks & no nose sores.

There are mask liners, a great source is Pad-A-Cheek.com, these are a nice soft flannel & help stop leaks & sores.

I've just given you a few ideas, we will help you, just hang in there. I know its hard to accept all this, but by being diagnosed at a young age, you have the opportunity to avoid all the health problems that OSA causes. Many people don't find out about sleep apnea until it has damaged their health.

Finally, its OK to cry, just remember we are here to help. Just hang in there & it will get better.

Jen

The first thing I think of when encountering sores is that the headgear may be too tight. Put a dab of Lansinoh cream (it is used to treat cracked nipples while breastfeeding) where the mask touches your skin and loosen things up a little.

Another thing you may want to consider is putting a calming DVD in and sit down and watch it with your mask on and machine running. Many times you can identify "issues" while awake that would cause sores if left unattended while sleeping. If you happen to drift off to sleep, that's OK too.

OK, I've turned on a few lights in the tunnel. We're here to help as best we can and by now you should be seeing some light...

Thanks everyone for giving me some perspective! That's what I needed. Reading your responses before bed calmed me down a bunch. The ResMed masks I used were the AirFit P10 Nasal Cushion for her and the AirFit N10 Nasal Mask for her. I really liked the ResMed masks a ton better than the Wisp, but I was worried I might be allergic because of the breakout/sores. I use a chin strap, but will wake up with myself up with the stream of air coming out of my mouth. I don't think of myself as a mouth breather, but I do have chronic, year-round congestion and allergies. I also broke my nose twice in the same month playing roller derby which is my guess as to why nasal the nasal cushions don't work for me- my nostrils healed unevenly. Here is my sleepyhead data:

CPAP Statistics
17 days of CPAP Data, between Mon Jun 2 2014 and Wed Jun 18 2014
Details Most Recent Last Week Last 30 Days Last 6 Months Last Year
CPAP Usage
Average Hours per Night 10:32 08:13 07:55 07:55 07:55
Compliancy 100% 100% 100% 100% 100%
Therapy Efficiacy
AHI 1.23 1.25 1.11 1.11 1.11
Obstructive Index 0.28 0.31 0.31 0.31 0.31
Hypopnea Index 0.95 0.78 0.66 0.66 0.66
ClearAirway Index 0.00 0.16 0.13 0.13 0.13
RERA Index 0.57 0.64 0.52 0.52 0.52
% of time in CSR 0.19% 0.11% 0.18% 0.18% 0.18%
Leak Statistics
Average Leak 1.48 1.02 1.30 1.30 1.30
90% Leak 5.00 4.00 5.00 5.00 5.00
Pressure Statistics
Average Pressure 7.63 7.61 7.56 7.56 7.56
Min Pressure 5.00 5.00 5.00 5.00 5.00
Max Pressure 8.00 8.00 8.00 8.00 8.00
90% Pressure 8.00 8.00 8.00 8.00 8.00

Changes to Prescription Settings
First Last Days AHI FL Machine Pr. Rel. Mode Pressure Settings
6/2/2014 6/18/2014 17 1.11 0.00 PRS1 C-Flex x3 CPAP
Efficacy highlighting ignores prescription settings with less than 5 days of recorded data.

Machine Information
Brand Model Serial First Use Last Use
Philips Respironics RemStar Pro with C-Flex+ (460P) P1115347268EA 6/2/2014 6/18/2014

So I guess my question is, if my therapy is working so well, why aren't I sleeping? Could it be because my brain is so ingrained in a pattern of insomnia that even without the respiratory obstructions it won't settle down for the night?

Also- if it is a fit problem and not an allergy, might I be able to go back to a ResMed mask without the unsightly facial wounds?

Thanks again for your help.

Have you asked your DME to try other FF masks (there are so many these days) while lying down, fitted properly in your size and not overtightened? Once a mask is on, you can fiddle with it a bit, lifting slightly at first to let the cushion inflate, pulling down (if that helps to seat it well), wiggling this way and that, and if it incurs leaks, then try another and another til one feels best. You shouldn't have such a hard time with so much choice (see Cpap.com under 'masks', then FF ones) but if you do, after trying lots, try Pad-a-Cheek liners and see if they help.

Laura000 wrote: Also- if it is a fit problem and not an allergy, might I be able to go back to a ResMed mask without the unsightly facial wounds?

Silicone allergies are rare but not impossible to have. My first suspect would be fitting.
What size nasal pillow with the AirFit P10 did you use? Do you have the other sizes that should have come in the package available. I am using the P10 right now myself and have been since January. It's a great little mask.
Who fitted you for it? Did they try to cram the nasal pillows into your nostrils? Have you watched the fitting videos for it.

Some people find that the humidified air actually helps with chronic nasal congestion issues. I actually breathe better when I get up in the AM than when I go to bed. There are some things to do to help also. We can talk about it later.
Your leak numbers so far don't point to a huge amount of mouth breathing. When you get time can you get familiar with posting screen shots of the daily detailed graphs? They are more helpful for evaluating therapy and leaks than just the statistics page?
Explained in this thread with some examples.
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

Laura000 wrote:So I guess my question is, if my therapy is working so well, why aren't I sleeping? Could it be because my brain is so ingrained in a pattern of insomnia that even without the respiratory obstructions it won't settle down for the night?

Yes, it very well be that the insomnia issues aren't related to the OSA alone. Most of the time insomnia comes from multiple causes and the machine can't fix what isn't related directly to OSA. AHI being nice and low doesn't guarantee a miracle fix for bad sleep if the bad sleep isn't related to OSA alone.

It took me several weeks to work up to 5 hours of sleep from 4 and probably 6 months to work up to 6 hours of sleep on a regular basis and I didn't have any mask issues like you are experiencing.
Heck, even now for the last couple of months I have been waking up sooner than I want and not be able to go back to sleep and I know that it is unrelated to my OSA therapy...I just can't figure out what it is related to though but the OSA part is well controlled. I used to get close to 8 hours of sleep regularly and now I am doing good to get 6 to 6 1/2 hours of sleep. My body doesn't like 6 hours of sleep.

Even under the best of circumstances it takes time for the body and the brain to adjust to having the alien plastered on our face and blowing air up our nose. Let's face it...it isn't natural. With time the brain gets used to the alien and we adjust a bit but if we have other issues with our sleep in general then we can't expect the machine to fix what it can't fix...it would be so nice if a nice low AHI guaranteed perfect sleep but it just doesn't work that way.

So..what to do while the body is adjusting? Take a look at your sleep hygiene in general...is it good or bad?
Take a look at any meds you might be taking to see if any of them can affect sleep quality...you would be surprised at how many people we find take some sort of meds that affect the sleep architecture and/or sleep quality.
Take a look out outside external factors that might affect sleep quality....bed comfort, bed pillow comfort...sleeping position with the new alien stuck on our face.
Take a look at any other general health conditions that you might have.
Do you have much pain for some reason? I have the good old arthritis stuff that's pretty bad and it really affects my sleep quality and it might be the primary culprit in my current difficulties.

If you don't want to go the full face mask route right now...let's wait a bit until we see some leak data to see if mouth breathing is seriously impacting therapy. It's not like the FFM don't come with their own issues anyway.

Laura000 wrote:I am just so very down because of this. I could use some light,
because the tunnel seems never ending right now.Thanks.

The tunnel is life. The journey is the reward.
The challenge is to stay the course.....walk your path.

Cpap is about much more than blowing air up your nose.
It's about a trip into yourself. A journey to find yourself.
An opportunity to realize your limits and push beyond.
Embrace this. Go beyond where you have ever been before.
Expand your imagination to find the fixes.
Alone, in the dark of the night, seek out the courage and determination
that is there, but never realized.

I think cpap has been a blessing.
We have all been down this road.
Along my path, I have realized that what I learned in dealing w/cpap
has made me a stronger person. Taught me how to deal w/many other
unpleasant challenges that have come to me. It has been a good thing.....
in so many different ways.

Life is change.
Growth is optional.
Choose wisely.
--Karen Kaiser Clark

I'll see you on the road.