First time user...lost and need guidance...

[AlanMacNeill]

OKay...first time poster...28 day incredibly frustrated user (to the point where the machine is going flying through the window if I don't get some relief)

I have a Phillips BiPap machine with the vast majority of the bells and whistles (hooray good insurance, I guess...), but if anything, nearly a month into the mission, I'm tireder and getting worse sleep than I had before the sleep study...

My settings are (apparently) not all that high, at 14/9, but I am not convinced that the machine is switching correctly.

My understanding, as explained by the therapist, is that the machine senses when I switch from inhale to exhale, and changes pressure accordingly. Yet, about 1 in 10 or so of my inhalations, the pressure drops from high to low while I'm still very much in the inhale stage, which throws off my respiratory pattern, and makes me more awake.

Add in that the mask, a full face model, just plain doesn't fit right under motion. I sleep on my side with occasional flips to the back, and all it takes is one roll over and voila, the mask is dislodged just enough that it's either crushing my nose, or there's a air gap because the mask slips over my mouth, or it twists, or, or, or.

The mask itself is loud and seems to be getting louder as the days go on. There's a *ton* of air coming out of the holes on top of the nose, which flows onto my eyes and is an irritant.

I can't just go with a nasal mask, as I am chronically congested (thanks Mom and Dad for your years of careless smoking! 30 years later and I STILL have issues). On a friend's advise, I use Afrin spray (well, the generic version) about 30 minutes before bed, but I see the warning on it that says "don't use for more than 3 days"...umm...I'm planning on living a little longer than that, thanks.

Additionally, the machine seems to stop providing pressure at all at random times.

Is my machine defective? Can I get the doctor to just "dumb down" the machine to provide a fairly steady pressure? What can I do to relieve the problem of twisting and turning leading to mask fail? Is there a better brand of mask to try?

IN short...please, assembled brilliant people whom I've never met, but whom i assume have been down this road before...HELP!!!!!

[n0hardmask]

OKay...first time poster...28 day incredibly frustrated user (to the point where the machine is going flying through the window if I don't get some relief).....
I can't just go with a nasal mask, as I am chronically congested (thanks Mom and Dad for your years of careless smoking! 30 years later and I STILL have issues). On a friend's advise, I use Afrin spray (well, the generic version) about 30 minutes before bed, but I see the warning on it that says "don't use for more than 3 days"...umm...I'm planning on living a little longer than that, thanks.

Additionally, the machine seems to stop providing pressure at all at random times.

Is my machine defective? Can I get the doctor to just "dumb down" the machine to provide a fairly steady pressure? What can I do to relieve the problem of twisting and turning leading to mask fail? !!

Hi, Alan and welcome to the forum. We can offer you better suggestions if you'll go into your profile and update your equipment, using Text rather than Icon for displaying your equipment.. Link to go there is in my signature line below.
I can relate all too well to the smoking of the elders problem.. I have 2nd-hand asthma and get desperate enough to place a tiny bit of Vicks Vaporrub into my nostrils, even when using my mask, to improve my breathing.
Once you have the equipment info out there, folks who use your type of CPAP and Mask can offer specific ideas on your issues. I don't use a FFM so I can't directly help you unless you like Vaporub. ;~

[Pugsy]

Which machine? Which mask?

Please add your equipment to your profile.
Here's how. wiki/index.php/Registering_Equipment_in_User_Profile

If your machine has full data there is software available to see what is going on. Lots of potential reasons for not feeling improvement or worse but we need more information before we can offer ideas.

How many hours of sleep each night?
Is the sleep fragmented? If so why and how often?
Insomnia? Trouble going to sleep, staying asleep, going back to sleep?
Meds? OTC and RX
Other physical issues?
Bed comfort?
Mask Leaks....enough to impact therapy? Need software to see for sure.
Machine stops for some reason? Are you awake or asleep when this happens?

More questions are possible but these are a starting point.

[jabman]

Hi and welcome to the board.

You sure do have a lot of questions and you came to the right place to have them answered.
I do not use a BiPAP machine my self but there are others that can help with that and they will.

But first let me suggust that you go to your User Control Panal (below the search textbox) and fill out your equipment (text perfered). That way when someone comes to help they will know your equipment and can better help you.

As you seem to have many problems I think that it would be a good Idea to start out with trying to fix one at a time insted of all at once. I think the most important problem to fix for a biggener is the mask ( this will also fix leak problems). there are tons to choose from and most DME's will exchange them with in 30 days.

Besides the mask ( and maybe this is more important then mask) is weather your machine is data capable which is important in letting you know thingd such as leak rate and your AHI. If you have a BiPap with "all the bells and wistles" then your's is probably data capable in which case you need software to downolad your data. then you can post those graphs here so others can help you read and understand whats going on.

most important is that you don't give up and comming here is a step in the right direction.

[AlanMacNeill]

Thanks everyone. I've made the best edit I can with my current information to the profile. According to Lincare, I have a "Respironics DS650 BiPap" machine, I know it has "Phillips" stamped on the front...and I know it has a function that can modify the pressure based on needs...I don't think it's *active*, but on the other hand, it feels like there's less pressure in the morning, so I don't know...all I know is what I'm told my machine is isn't on the list...or if it is, it's hiding well

I have a mask refit appointment tomorrow at 11 AM (just barely sneaking in under the 30 day window...), so I'm hoping to go in with something resembling intelligent to ask them. The entire process the first time went from "Hey Doc, my wife indicates I snore and breathe funny at night" to Sleep study (one...singular...they sqooze everything into one hellish night...there's a rant there but I'll save it for another post...) to "Damn, Alan, OSA starts at 5 incidents/hour...your score is 32." to "Okay, here's your machine, here's a 5 minute instruction on how to break down your mask and tubing to clean it, just push this button and the machine does the rest, sign here, here, and here please" and voila...here I am, with an elephant trunk attached to my face and not being able to sleep at all...with practically no information at all, no choices, no consultation, just "This is the road, good luck".

(No, I'm not thrilled with Lincare at all to this point, but they're who the insurance company works with).

[Pugsy]

Let's get you the software to see what is going on.
You have options. See them here. viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options
If you want additional information on Pro send me a private message.

If you don't have the clinician/provider manual for your machine you can request it here.. Make sure you request it properly as PR System One Remstar BiPap pro with.... because if you just say Remstar Pro BiPap there are old models with same name. Respironics uses that Remstar model on everything.
http://www.apneaboard.com/CPAP%20Adjustment.htm

Once you get a handle on your reports and answer the questions I asked in my first reply to you then the members here can offer more specific ideas to help you with your adjustment issues.

[AlanMacNeill]

And to answer some of the other good questions asked:

How many hours of sleep each night? - I go to bed around 10:30-11, settle in for a bit, generally start trying to get to sleep between 11 and 11:30, with alarm set for 7:45 AM.

Is the sleep fragmented? If so why and how often? - Sometimes yes, sometimes no. I know for the last few weeks I've been waking enough around 2:30-3:00 to notice taht the mask is not doing anything useful and take it off (kinda roughly, I admit, I am not a happy person when I wake up suddenly)

Insomnia? Trouble going to sleep, staying asleep, going back to sleep? - When stressed (which is most of the time) it is hard to get to sleep. I rarely consiously wake up, although my wife says I have been known to do so. Occasionally need a potty stop in the middle of the night.

Meds? OTC and RX - Occasional prescription naproxyn for a shoulder arthritus (500 mg, 2-3 nights a week when it is painful), generic afrin nasal spray nightly to try to fight congestion since I got the machine 4 weeks ago.

Other physical issues? - I weigh about 350 lbs, but my numbers are good (BP high normal, Cholesterol normal, sugars normal, etc).

Bed comfort? - It's a 6 month old temperpedic, and is plenty comfy, usually. If I'm in a "I can't sleep" mode, it sucks, but that's not the bed, it's the sleeper.

Mask Leaks....enough to impact therapy? Need software to see for sure. - Dunno...I know my machine has a Sd card that I can supposedly download and examine data, but I do not know the name of said software, nor do I have it.

Machine stops for some reason? Are you awake or asleep when this happens? - The machine claims to be on, but I can wake and take several breaths and notice no actual airflow. Generally after a couple of breaths it returns to normal.

[Pugsy]

Please see the link in my post above about your software options. I can help with the software. I am sort of geeky.

If your sleep is fragmented for any reason it will surely mess with how you feel.
If you are removing the mask during the night for whatever reason and sleeping without it the rest of the night that is bad, bad habit to get into. You cannot expect 3 or 4 hours of sleep with the machine (even if therapy is perfect) to do its job. Must use it all night long....every night.
Insomnia...common problem...need to work on isolating cause and attempt to fix it. Often easier said than done.
One of our other members here Robysue has had some mighty struggles with insomnia and has some well documented ideas to that she has tried. You can read about it in her blog here..http://adventures-in-hosehead-land.blog ... er_19.html

Let's start with the software. We need to make sure the therapy is even optimal and then also work on the other things.
If you have problems understanding how to use the software send me a private message with your questions.
Often there is much more to feeling well rested than slapping the mask on. It takes a lot of hard work.

Once you get to the point where you actually have some reports for review this is how I post images of my reports.


Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

[Perrybucsdad]

Alan... take your pillow and Bipap with you tomorrow when you go for the mask thing. Make sure you flop around a bit and make sure it works for you. I go tomorrow for mu APAP device and that's what I plan on doing. If I have to be there 5 hours to find one I like, you damn well better believe that is what I'm going to do.

[ThirdOutOfFive]

Sorry you are having such a hard time. You have come to the right place to get expert help. I know this is frustrating -- I've had what I consider an "easy" adjustment. (4 weeks in and am sleeping through the night with the help of meds and only on my second mask )

Keep trying to find what works for you. Each of us is different, and we have to be the squeeky wheel until we get what we need.

BTW, welcome to the club. Hope you will be "PAPpy" here.

[cflame1]

as for the congestion... after awhile, Afrin will make it worse you know, right?

try a Netipot/saline rinse... check your local drug store for it. It'll take awhile to get it to start working... but you really need to get off Afrin.

[Perrybucsdad]

What about seeing if your doc can prescribe Flonase or something like that?

[CynConn]

Flonase or Nasacort is a good idea for the chronically stuffed. Allegra works well for me and is OTC these days. I have a Neti pot but haven't tried it yet.

You are doing the first steps, making sure your machine works properly and working on a mask that fits. I use the Hybrid, a combination nasal and full face. It is the ONLY one that comes close to fitting me. I have the headgear very tight so that it doesn't slip around. Make sure your face is very clean before putting on the mask, sweat and oils can make it slip around.

Rather than an equipment failure, it may be part of a "normal" adjustment. After 28 days of using a machine, you may be entering the "getting more than 2 hrs of sleep so I am no longer in a coma" mode. I have been on CPAP and now BiPAP since 1996. I HATED it at first. The first few days/weeks were ok, I slept like a log because I was so unbelievably sleep deprived. Then I entered the "everything bugs me" phase. I was just rested enough to wake up in the night - frequently. Machine too noisy, too hot, too cold, had to pee. And always, mask slipping so I would spend half an hour "tweaking it". Your body may be no longer sleep starved and so things that you normally wouldn't notice due to exhaustion, you now do.

My big advice is do not take the mask off, for any reason, just bear with it. Try the usual tips to de-stress before bedtime. And just remember you are adding years to your life (most of which will be spent fiddling with the damn mask ). I still have nights when it drives me up the wall but I still leave it on. I prefer to think of my mask as the thing from Alien rather than an elephant trunk. And I agree, other than how to clean the stuff, very little information is given out which is why groups like this are so great. Welcome to the club that no one wanted to join!

Cynthia

[archangle]

It's very common to think the machine has stopped blowing when it hasn't. When you first start, you feel like you're sticking your head out the car window going 60 MPH. After a while, you don't feel it as much.

When you start your machine, put your hand over the vent holes where air blows out of your mask. I think that's between the eyes, blowing straight forward on your mask. Feel the air stream.

When you think it's stopped, put your hand over the air stream and see if it's blowing. Look on the display for your unit (you'll need a flashlight) and see what it shows for inhale and exhale pressure. Look at the display when you first turn it on so you understand the display. It's a lousy display, so it's hard to see the numbers with a flashlight. You can also reach up and lift the edge of your mask and feel the air gushing out.

With a bilevel machine, it's possible that it's somehow stuck on exhale pressure and not switching to the inhale pressure.

Of course, it's possible it has stopped blowing as well.

Does the air blow away from your face coming out of the vent holes? Is the air getting bounced back into your eyes by your cover or pillows or some such? Be sure air isn't leaking around the mask seal directly into your eyes.

A hybrid mask might help. https://www.cpap.com/cpap-masks/hybrid-cpap-mask.php Or it may just give you a different set of problems.

After 3 days, your congestion may get worse with Afrin. You can quickly end up being congested all the time, and having to use the spray just to get a little relief. Try SinusRinse by NeilMed. It's a saline irrigation system that works well for some people.

The machine can be set to not drop pressure as much between low and high. There may be some other settings as well. It's pretty easy to get into the clinician's menu and change it yourself, but the medical "priests" will treat you like a heretic and threaten you with eternal damnation and slow, painful death. They will be able to tell you changed the pressure from the data recorded by your machine.

[AlanMacNeill]

OKay...so....I got SleepyHead installed because...well...because it's free and was downloadable. Hopefully that's enough.

Here's a typical night (last Sunday)



And here's last night (when I decided that this mask needed to be as far away from me as possible as quickly as possible and the rest of the night could just (deleted to maintain G rating)



And no, I didn't know Afrin had that side effect...good to know....plan B takes effect immediately.