Received my first machine yesterday.

[Spacemeat]

Howdy, ladies and germs!

As the subject line indicates, I'm a complete "newbie." I found out Sunday evening that I have "severe obstructive sleep apnea," and only picked up my first CPAP machine yesterday afternoon. The entire situation has left me pretty befuddled. I mean, I didn't expect for them to find anything wrong, and here I am trying to wrap my head around a heck of a lot of information. Even a cursory glance about this forum leaves me scratching my head at the many terms/abbreviations, the different types of machine models, the various ways a person can go about things, etcetera. The person I met with who provided me with the machine was swamped and behind schedule, and so I was sort of rushed in and out. I don't really know how to fiddle with any of the settings, though I don't think I'm supposed to? This entire period is allegedly a 'trial' for me.

I would be happy to become a member of this community, but at the moment I feel as though I am lost in the forest. Evidently, my pressure/setting/what-have-you is 16, which I hear is relatively high. That my sleep apnea is this bad is worrisome in and of itself. Is this common, especially for a 26 year-old? When I think of the person wearing the breathing mask, I think of an elderly hospital patient. It's a tad discouraging.

I am currently unemployed and receiving social assistance, which covered a very basic form of CPAP machine. My mask only covers the nose, if that's relevant. I find it fairly uncomfortable though, especially since the little 'flap' at the bottom is continuously touching/tickling my lips. I've tried fiddling with the little latch at the top, but that can only do so much. Also, I find it difficult to breathe out, since it is as though I am breathing against a 'wall of air,' so to speak. Does anyone have any tips in this regard?

Finally, last night I repeatedly rolled (in my sleep) onto my stomach/side, hugging my pillow, which is how I normally sleep. This meant, however, that the mask was sort of 'pushed' by the pillow to one side or another, letting air escape. Any suggestions there? I also suspect that I sleep with my mouth open, but it's hard for me to tell. Maybe I should set up a videocamera - heh.

If it's any help, I have the humidifier set to "III" and the machine says that the "RAMP" is off, though I had asked the lady at the office to have it set to ten minutes. I think she forgot.

I apologize for the disorganized nature of this post. As I mentioned, I am entirely overwhelmed. I've been suffering from depression for almost a decade, and was also diagnosed with ADHD when I was about 20. It's also worth noting that for as long as I can remember, I have been clumsy, lacking in any kind of meaningful short-term memory, unable to concentrate for long periods of time, lethargic beyond what I had a suspicion was 'normal,' anxious, emotional/sensitive, ad nauseam. I was told that most of this could all be related to sleep apnea, but I'm not holding my breath. The thought of getting 'better' from these things is enough to reduce me to tears, as they are obstacles that have cost me dearly in my education, my relationships, and so on. It seems unreasonable to expect that drastic of a change. What have others here experienced in terms of differences in disposition?

Again, thank you for putting up with my rambling.

[RafterRattler]

Wow....that was a mouthful. Welcome aboard. There is a wealth of help, advice and experience here. First things first. Can you tell us what brand, model of both the machine and mask you have? We can then go from there. 16cm is fairly high, and is going to make getting a good seal a bit more difficult, but there are lots of things to try.

Mike

[Spacemeat]

Wow....that was a mouthful. Welcome aboard. There is a wealth of help, advice and experience here. First things first. Can you tell us what brand, model of both the machine and mask you have? We can then go from there. 16cm is fairly high, and is going to make getting a good seal a bit more difficult, but there are lots of things to try.

Mike

Heh. Yup. I apologize for the wall of text.

In terms of what gear I'm sporting, it is the ResMed Elite II. I was told that this isn't the machine that I'll eventually leave with, though. I only have the Elite II because they want to track and monitor my progress and such.

The mask is also a ResMed, but I don't know anything more than that. It says "STANDARD" on one side and "ActiveCell" along the bottom, if that helps?

[Slinky]

Ha! You fell into a pile of pooh and came up smelling like a rose! That Resmed S8 Elite II w/EPR is NOT the bottom of the barrel by any means!!! You got a goodie of a device and I'd pray like heck I could keep it. But most likely you'll find out what the bottom of the barrel is after you've completed this trial w/the loaner.

As far as the mask: try the softest, most scrunchy pillow you can get your hands on so you can punch a hollow for the mask and your face when you change positions. Also try sleeping w/your face near the end of the pillow so the mask falls off the edge of the pillow.

Don't worry about the length of your posts. Use what is needed to get your information across to us so we can help.

Were you given any literature w/your mask? That will tell you and us what mask you are using.

As far as your data: press the Left and the Right button and hold for 3-4 seconds. Efficacy Data "should" show up on your LCD screen IF access to the advanced patient menu has been turned on. Hopefully it has, but if not ... we can remedy that too. IF Efficacy Data does show up on the LCD screen we're in great shape. From there on in the Left button will Enter, the Right button will Exit, the Down button will take you to the next screen and the Up button will return to the previous screen. Don't worry. You can NOT alter your therapy settings from this menu accidentally or intentionally. BUT you HAVE to do this BEFORE noon or the night's data will have been rolled over into the total averages. These xPAPs work on an internal, 24 hour, noon to noon clock. Be sure to write down the data in each screen each day so you can follow your therapy progress.

[Hawthorne]

You mentioned that breathing out feel like you are "breathing against a wall of air". Slinky mentioned that the machine you have has EPR. This is a feature that allows for exhalation relief. If you have that feature, I wonder if it is turned on. If it were, I would think breathing out would be easier. I do not have that machine but I do have Exhalation relief on mine ( called A-Flex or C-Flex ) on my machine.
Since I know little about Resmed machines, maybe someone who does -like Slinky -can let you know about that. Sounds like having it on would help you exhale easier. I know my machine's A-Flex does that for me.

[echo]

The mask sounds like an Activa. Mine says ActiveCell on it too.
Does it look like this: https://www.cpap.com/viewImage.php?PNum ... -front.jpg

For the activa you should wear the straps loose, and you can also adjust the angle of the forehead piece. We can tweak some more if you say that's the right mask. Normally it should seal very well and follow you from back to side to stomach. If not, then it's not adjust properly.

Oh I should have said welcome to the hosehead world It is not all that bad! Many of your complaints should actually clear up with regular CPAP use! For me it was the short term memroy loss, ability to concentrate, and speaking fluency -- all improved (not that you could tell that from my rambling posts )

I won't make a long post and overwhelm you, but I will direct you to "Our wisdom" - which is at the top right of the screen under the Yellow Lightbulb. Start there and read all that you can. All of the terminology is explained there, along with lots of other things (and especially read the humourous posts from Mike Moran, they will help you see we're not all invalids on our death bed )

Don't be afraid to ask questions here - as they say the only stupid question is the one not asked!

Good luck and again Welcome!!

[ozij]

Nothing rambling, or disorganized about your post - and as slinky said, don't worry about its length. A lot of data often helps other understand what is going on with you.

Factual lesson no. 1: The severity of your apnea is defined by the number of times your breathing gets interrupted each hour - that is called AHI (Apnea Hypopnes Index). Your pressure does not necessarily indicate how severe you apnea is, it does indicate how much pressure is needed to keep your airway open (the term is keeping it "patent").

Factual lesson on. 2: A pressure of 16 is very high. So high that if you don't addapt to it, they can try you on a bi-level machine. A bi level machine can be programed to give a large difference between your inhale pressur (also called IPAP) and your exhale pressure (also called EPAP).

I have no idea how the rules of social assistance function, but I do know that insurance companies have to pay for a bi-level machine if medical necessity idicates it. An inablilty to adap to a fixed pressure of 16 (to anything above 15) is an idication for a bi-level. Sometimes, before they pay, a trial on fixed pressure has to be attempted.

The Elite II is a high end fixed pressure, data reporting machine - they will use its data to decide how to continue.

Having a nasal only mask (not full face) is pretty standard - nothing to do with cost cutting. However if you sleep with your mouth open, a full face mask may be better.

Click on the following link viewtopic.php?p=69526#69526 to read about how to handle mouthleaks.

And then there's hose handling: viewtopic.php?t=10640

Finally, you're as much a member of our community as anyone else - and yes, many of your symptoms: " depression for almost a decade, and was also diagnosed with ADHD when I was about 20. It's also worth noting that for as long as I can remember, I have been clumsy, lacking in any kind of meaningful short-term memory, unable to concentrate for long periods of time, lethargic beyond what I had a suspicion was 'normal,' anxious, emotional/sensitive, ad nauseam. " can be the result of having your brain deprived of oxygen since childhood.

Welcome, and good luck.
O.

[RafterRattler]

Ok...so let's see. Others have already mentioned some good things to do. I'll add a few more comments. The Elite II is indeed a great machine. I have the next model up from that, and I believe the data menus are the same. I'll add a little more detail to what Slinky said. Provided your provider has Smartdata turned on, if you press and hold the right & left buttons for 3-4 seconds, a menu should come up that says 'review'. From there, getting all the data is a matter of going through a series of menus and writing things down. Don't worry, there's no way to mess up your settings in this series of menus.

1. At the review menu, press the left button to go into the next menu. You should have two submenus - 'settings' and 'results'. You can switch between them using the up/down keys.
2. Go into the setting menu, and tell us all the settings you see (scroll down by using the up/down keys).
3. Now exit back to the settings menu, press down to go to results, and enter that menu. You should have 'efficacy data' and 'usage' as choices. Go into the efficacy data and tell us all you see, using the up/down keys to scroll through. This will give us the daily data. If it says no data, wait until tomorrow morning to try it - as the data clears at noon (assuming the time on the machine is set correctly).

(BTW, I did that from memory, so I hope I got it right...)

Now, if you can't even get into the 'review' menu, let us know. We would need to go into the settings of the machine (the stuff they don't really want you to touch) in order to turn it on, so we'd want to be careful there.

What worries me as that the Resmed machines really need to be set up properly. When I got one for a test drive, my doctor told me just to plug it in and use it - without mentioning that I need to set it for the right mask (and it was set wrong). In addition, the settings were all screwed up.

So the Ramp thing is intended to help with that 'wall of air' feeling. It slowly ramps the pressure while you go to sleep so you can get used to it. Based on what your settings say above, we'll talk more about that.

The humidifier setting is entirely up to you. The higher the number, the warmer the mist.

On the mask, I didn't like that feeling on my upper lip either, but I eventually got used to it. Now I use a full face mask and it's not an issue. I have found that I can sleep on my side quite well, but it does take practice to adjust the straps, pillow, etc. to avoid having gaps open up. This will take some time, patience and practice. Big leaks are NOT good, so don't try to sleep that way.

Mike

[Spacemeat]

Wow! Firstly, let me thank everyone who took the time to reply to my initial post(s). After writing them, I disappeared for the weekend to a friend's cottage, which certainly made the experience of using the machine on the road some fun.

The mask sounds like an Activa. Mine says ActiveCell on it too.
Does it look like this: https://www.cpap.com/viewImage.php?PNum ... -front.jpg

That's our culprit! Actually, I'm slowly becoming more used to the mask, though I will note that it tends to slide around a lot if I don't have the straps fairly tight, which in turn can make it a little difficult to sleep. I think this is because I sweat a heck of a lot, and at the drop of a hat; I'm fairly confident that this is a side effect of the antidepressants I currently take. On a related note, I also seem to have some red, dry skin at the top of my nose, right between my eyes, where the mask 'rubs' against it. A couple of pimples formed initially, and after they popped, the scar tissue was left. It bled a little today but the main problem seems to be that the skin won't fully heal since every night it's once again stuck under the plastic or what-have-you of the face mask.

Any suggestions?

I'm also wondering if it's normal to feel a little light-headed/dizzy after waking up in the morning. Then again, this could be the result of me having my machine set to 16, which (as we've gone over) is pretty high. It's a vague sensation, and nothing really worth writing home about, but I felt that I ought to perhaps mention it regardless.

Oh! I almost forgot: I am fairly confident that I am a mouth-breather. I have the humidifier set to III and I still wake up with a dry mouth in the mornings, which strikes me as odd. If that's the case, I'm not really getting much use out of the machine at all, am I? Or am I totally wrong here? It seems to me that I'm negating its effects seeing as how it only covers my nose.

Interestingly enough, there tends to be a lot of condensation in my mask in the mornings too. Often, little droplets of water will drip down - and if I am really unluckly, into my nose as I inhale! Is this something that tends to happen a lot?

Oh, and finally, I have also noticed that I often wake up on my stomach/side, clutching my pillow, with my mask leaking a little or--even worse--pushed out of its normal spot entirely. I will fix it and then go back to sleep, but is there a way to ensure that I avoid rolling all the way over while I sleep? I really would like to avoid having to tie myself to my bed if at all possible - aheh.

[mymontreal]

Welcome, from one relative newbie to another - I was diagnosed about a month ago and I'm coming to the end of my third week on the machine - this forum has made such a difference - the terminolgy definitely seems overwhelming at first, but we have great teachers & based on your posts, I'd say you are already picking things up pretty fast

The first week or two seem to have been the worst but I'm starting to get used to it now - I have an "Auto" CPAP machine which varies the pressure during the night, depending on how many sleep apnea/hypopnea events are occuring (I think I got that right...) - in theory, I should be able to see what kind of pressure works best for me, but at the moment it seems to be pretty random.

However, I now have the software that allows me to review the data from my machine - I evidently have a number of leak issues that need to be resolved & that's going to be my first priority! It's unfortunate that most of us get little useful support from our DMEs, but this forum more than makes up for that.

I think we can all relate to picturing an elderly hospital patient when we think of someone wearing a breathing mask - I'm trying to think of it differently now... maybe I should think of it as just going to an Oxygen bar in Amsterdam for some kind of nightly "pick-me-up" session who knows, maybe they will eventually find that "everybody" will benefit from a few hours on a cpap machine each night!

We do know that many, many people suffer from sleep apnea and very few of them are ever diagnosed - we are certainly the lucky ones from that perspective.

Good luck for the remainder of your first week.

Mike

[JayC]

Welcome!

Newbie here as well...diagnosed early June, hosed since mid-july.

It might sound like small consolation, but at 26, you have the hope of proper treatment so as to lose little more vitality and good life to the apnea and all the "destruction" to relationships, education, happiness, memory that comes with the apnea.

Based on symptoms, I have had disordered sleep, and sleep disordered breathing since at least puberty. I am 47.

Been blown off all my life....even 5 years ago they said I *barely* met criteria based on number of events. I am not sure if they hooked me to an oximeter then.....and I found out in June that my oxygen levels drop to mid 80s during sleep (hypopnea is more my issue).

Even now, the neuro who referred me to this (my second ever sleep study) keeps mentioning in reports about inadequately treated depression. It is not. I have been treated for depression since the 80s and medicated more than not since the early 90s to present. More of my issues *are* showing to be *other than* clinical depression.....symptoms of oxygen deprivation share much with what are seen as symptoms of depression.

During my study, I had significant positive results the next day...even with the pressure headache from the mask sitting on my sinuses. In the last month, I am becoming a pleasant morning person, without the irritibility and dull hangover-ish feeling, and poor concention and functioning.

I know I'll continue to have depression issues as I have a bit of seasonal depression going on (lack of light). And my brain chemestry *is* wacky for other reasons. But maybe proper CPAP treatment will lessen or clear some of that up as well --- over time.

I'm with you on the "anti-drepressant/psych med sweating". Don't have any suggestions for that except trying a different med. Of course, if you are getting good results with it, I'd leave it be unless you find the sweating a "deal breaker" side effect. It is really up to you in partnership with your docs....especially if the sweating is getting in the way of proper apnea treatment.

Again, welcome. Wishing you better functioning and vitality and fewer losses...

J

[bdp522]

For the skin irritation, I have found that a light coating of milk of magnesia on the skin before masking up helps the skin heal faster. It acts as a protective barrier against the mask, but doesn't mess up the seal.You also have to be sure to clean your mask every day, and be sure you wash your face well every night.

Mouth breathing or mouth leaking WILL ruin your treatment. You need to fix that. Click on this link for ideas to stop this;
viewtopic.php?t=8011
The only other choice is a full face mask.

Condensation in the mask/hose is called rainout. It is caused by the warm moist air from the machine cooling down on the way to the mask. Try a hose cover. You can buy one or just use some old tube socks with the toes cut off. The idea is to keep the hose warmer. Any fabric wrapped around the hose will work. You might also want to lower the humidifier setting.

Brenda

[echo]

I've read using Moleskin applied to the mask, at the point where your sore is, will help with that.

I wonder if your Activa is the right size? Normally you need to keep it loose for the bellows effect to work, and it usually seals really well.

[westbeez]

Wow, diagnosed at 26!!! concider yourself very lucky. I've had sleep issues my whole life and morning headaches to kill a horse but wasn't sent for a sleep study till 2 months ago. I'm 54 and without insurance so had to rely on all the information I could find on this site to make a choice in picking out my equipment THANKS EVERYONE!!! My first night on Cpap was a week ago and I slept 7.5 hours without waking even for potty breaks which is amazing by itself at 54. And have slept straight through every night. I feel better then when I was 30 and look forward to sleep now. I've had nasal mask issues also and just bought a second mask that is petite size, hope it fits my tiny nose better. Keep hanging in there and think how much better you'll be soon!!!

[carbonman]

As I mentioned, I am entirely overwhelmed. I've been suffering from depression for almost a decade, It's also worth noting that for as long as I can remember, I have been clumsy, lacking in any kind of meaningful short-term memory, unable to concentrate for long periods of time, lethargic beyond what I had a suspicion was 'normal,' anxious, emotional/sensitive, ad nauseam.

Spacemeat, welcome to the world of recovery.

I'm a newbie, too. Tonight is exactly 11wks for me.
I won't try to give you anymore info......,many others here are
much better at that.
What I will tell you is, I suffered from all of the things you mentioned, for years.
Especially the depression. The more I know about OSA and hear others stories,
I know that much of that was from being so tired. I had no energy to fight back.
I suffered w/chronic fatigue and pain in my legs for years.
Over the past couple of years I was loosing my ability to play my guitar.
My coordination and strength was just slowly going away.

In my infant cpap journey, it is all coming back.
It's not happening over night, but it is happening.
It hasn't come easy. I have to work at it,everynight.

....but, it is coming back.

Every minute you keep that mask on and every minute of quality sleep
you get, will be worth it. Once you begin to feel it, you'll know.

Keep coming back. You'll learn all the words and acronyms and models.
Keep asking questions.
Keep putting that mask on.
It's your life.