I could really use some help here.  I just started treatment this past week with the Remstar Pro M Series with a full face mask.  I have a pressure of 10, with a 20-minute ramp with pressure starting at 4 and the C-Flex at 3.  The machine includes a humidifier.

I was so looking forward to getting my machine and starting to feel better.  Unfortunately, the last week has been extremely difficult.  I would appreciate any advice you might have.  

I used the CPAP over several nights, but only was able to keep the mask on for 1 hour at a time- at the most.  I found the 10 pressure to be overwhelming.  It was very difficult to exhale, I kept having that feeling of suffocating that I’ve read about in the forums, and I was unable to sleep once the pressure reached 10.  The mask also kept “jumping” a bit off my face and making a little "whew" sound every time I exhaled.  In addition, I found the machine to be so noisy, both at my end and the machine’s end, that I could not get to sleep, despite earplugs and a fan running to cover the noise.

I have been so disappointed because when I tried the CPAP and full face mask during my sleep study, I had no problem with it, found the mask to be comfortable, and found the machine to be extremely quiet.

I have an appointment with the sleep clinic this week.  They are suggesting I upgrade to an “auto” machine, to regulate pressure with each breath.  I also asked about allowing me to regulate the pressure, e.g. starting at 4 and living with that for a couple of weeks, then going to 8, etc.  The answer was an unequivocal “no”.  (I plan to contact my doctor on that point; this clinic has not been particularly patient supportive.)  I also may be trying a different mask, although I don’t want to give up too soon on the full face mask.  I know it can take a while.  However, at this point, I'm not using the machine until my appointment - it's been that miserable.

So, I am feeling pretty confused at this point as to which machine to use, how best to approach getting used to the pressure, and which mask it might be best for me to start out with.  (I did try the nose only mask originally during my sleep study, but found that odd.)  

Any advice you might have, particularly on the pressure issue and my best approach to that and the auto vs. the regular machine, would be welcome.  

I also wanted to know if you might have advice on sleep wedges.  I have taken to sleeping semi-upright on the couch because I’ve had a couple of decent night’s sleep in that position.   I’m starting to investigate wedges but some of you may know more about them than I do.  What’s the right size?  Where to purchase them?  Good brands?

Thanks so much.  It’s really great to plug into all this experience.

Which full face mask are you using? Since it worked so well for you during your titration my guess would be that the local DME supplier's RT is not as good at mask fitting as your sleep tech at your titration is. You should discuss that w/your sleep doctor and ask if you could have another mask fitting w/that particular sleep tech. I know I would.

By all means, upgrade to the autoPAP!!!! In auto mode it works like an in-home titration, sure beats another night at the sleep lab both for comfort and expense. AND once they've found "the" right pressure for you w/the auto it can be turned to straight CPAP mode if you prefer. Usually straight CPAP mode is more comfortable in the long run due to less pressure changes possibly disrupting sleep. Others find the auto mode more comfortable. Whichever one works for you is the way to go. The key is you are going to want to do that xPAP exchange NOW before you've been on this CPAP for 30 days!!!! Once that first 30 days is up its darn hard to convince the local DME to make the exchange.

The nice part of your having had the in-lab titration is that they can better select an autoPAP pressure range for you rather than a wide open 4 cms to 20 cms of pressure. At 10 cms of pressure w/C-Flex set at 3, you were actually getting expiration pressure relief at about 7 cms of pressure.

My guess is that a good starting pressure range for you on that auto would be 6 cms to 12 cms. Or even 8 cms to 12 cms. C-Flex would take your lower pressure down to about 5 cms on exhalation.

I wouldn't waste my money on a sleep wedge. If you have a recliner you would do better sleeping in the recliner than w/a wedge. IF I were going to spend my money on either I would go w/the recliner!!


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

sounds like youir CPAP wasnt set up properly, carefully read the instructions there  are often several different operating modes


_________________
resmed S6 lightweight, respironics comfort gell mask using CPAP since 1995, no humidifier
during my many years of severe fatigue, no doctor ever asked me if I snored

Thanks so much for the feedback.  I really appreciate hearing from those with experience with the CPAP.

They sent me another card, with a lower pressure, to experiment with until my next appointment this Thursday.  Can't get that to work, either...beeps and blinks, no matter which way I put it in the machine.  So.deeply.aggravating...

Hoping things get better with an upgrade to the auto machine.

Discouraging, I know, Christin, but just keep reminding yourself how well you did during your titration study. I'm glad you are able to get in to see the sleep doctor this Thursday. Good luck!!!

And a gentle hint: when putting your mask on at night - LAY DOWN to put it on. Our facial tissue is subject to the law of gravity and the mask fit sitting up is NOT the same as the mask fit laying down. Also don't be too quick to tighten your headgear straps if you feel leaks. Lift your mask just off your face and let the cushion fill w/air again. Shift your headgear up a little, down a little, to one side or the other a little. For minor leaks just run your fingertip along the seam between the mask cushion and your face. If you MUST tighten straps some more, looser straps up top and tighter at the bottom (even for leaks around the eyes) is generally more effective than vice versa. Often hanging your hose above your head will reduce or eliminate the "tugging" on your mask that can cause leaks when you shift positions during the night.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Thanks, ChronieToo.  Really appreciate the encouragement.  It's just kind of a rough time right now.

Been there, done that, Christin. I do understand. My first 30 nights on CPAP were the worst sleep I'd ever experienced. But then things gradually improved from there. If things are no better in 30 days after starting therapy contact your doctor and insist on some further assistance. In my case he raised my pressure by 1 cm. That started the improvement. But w/in another 30 days it STILL wasn't ENOUGH improvement, so he raised my pressure another 1 cm and again some improvement. Greedy soul that I am that still wasn't enough improvement and I insisted on another overnight oximetry whilst on CPAP to prove my point or a loaner CPAP. Each complaint to my doctor brought a change in therapy and improvement in my CPAP therapy. The doctors can't know you have a problem unless you let them know you are having a problem. No one has a more vested interest in your health care than you do. So give it your best for 30 days and if not satisfactory improvement, tell your doctor.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Christin,
You are getting good advice on this forum. I hope it will help you. I just want to say, hang in there and keep trying.  I know how you feel. It's so scary in the beginning because you don't know what "normal" is supposed to feel like so you can't tell whether or not the machine and mask are acting the way they are supposed to.  It's encouraging that you did well with the mask during your study because you have an idea of what to aim for. It's taken me a long time to figure out how to get my mask to cooperate. Crohnie's suggestions are excellent.  Even so, I still have a rough night now and then with the mask sliding around or letting out nasty burps.  Most nights are better now.  

I think the reason your clinic doesn't want you to use such a low pressure for even a couple of weeks is that your apnea will not be treated properly during that time.  You will probably be more comfortable with more relief on exhalation however.  The good thing about the auto is, as Crohnie stated, it can be set to straight CPAP once your correct pressure is determined.

Good luck. It does get better, but it can take time and patience which can be hard to come by when you are tired.
Grandma


_________________
ResMed Quattro Full Face Mask
ResMed S8 Escape with heated humidifier
Pressure set at 11

I think you both really hit the mark, in terms of your understanding of what's going through my mind right now and how I'm feeling.  It's very comforting to know that a whole lot of other people have been through similar difficulties and that it CAN get better.  I can't tell you how much I am putting my hopes in that last part!

We'll see what they have to say at the sleep clinic tomorrow.  I am definitely planning on continuing to be persistent to get what I need!  

Thanks again...

I am new as well with 2 nights under my belt.  Just got the machine on Tuesday.

Night 1 was miserable.  First mistake was probably trying it without the humidifier.  I disconnected myself after an hour and a half of re-starting the ramp feature over and over.  Let an hour or so pass and tried it again.  This time I kept it on for the rest of the night but didn't sleep much.  Seemed like I was fighting against the thing all night.  Pressure seemed too high.

Night 2 (last night) was much better.  Attached the humidifier.  Still took about 30-40 minutes to get to sleep - resetting the ramp button a couple of times.  Once asleep, though, slept all night.  On my back the whole time, though.  Need to work on that.  Was rested but stiff.

With my extensive 48-hour experience and reading about others, I'd say stick with it.  It seems like everyone adapts differently but eventually gets adjusted.


_________________
Bob L.
-----------------------------------------------------------
Respironics REMstar® Auto M Series
with C-Flex™ & Humidifier
ComfortLite™ 2 - Nasal Pillows Mask
Setting: 18 cm H2O
-----------------------------------------------------------

Hi Everybody-
Haven't posted in a number of days.  Had some family for the holiday and took a temporary CPAP holiday myself.

I've been trying to get back to it over the last few days.  It continues to be frustrating.  I had a better appointment than expected with the sleep clinic last week.  The technician immediately identified that the original face mask I'd been given was way too big (who knew one could have a "petite" face????) and that one of the cards they gave me for the machine wasn't working.

I came away with a loaner auto machine, my original machine, and both a full face mask and a nose only mask to try.

I keep trying both masks, with the humidifier (started with 2, went to 5, then down to 1), but am really struggling with that feeling of suffocating.  I thought maybe the nose only mask might work out but I find that (despite using nose strips) I get too congested every night to be able to breath through my nose only.  I guess it's probably allergies.  I also wake up the instant I fall asleep...not sure what that is.

Glad to hear DarthVaderOH is having a better time of it.  I'll keep trying.
The best I've done thus far is to sleep 1 hour last night with the full face mask on.  I am determined to make this work, but it looks like it's going to take much longer than I ever anticipated.

Reading your post, I am having similar problems.  I put the mask on (a gel respironics nasal mask) and the ramp seems to build to 10 very quickly.  I feel like the mask is very annoying and I can't exhale at all through the mask so I puff out of my mouth.  I have yet to fall asleep after having the machine for 2 weeks.  During my clinic titration, they had me on alot of Ambien, so I went right to sleep.  Now - NO LUCK!  I can't relax due to mask feeling weird on my face, air blowing, focusing on breathing, etc. I have a dr. appointment next week, but nothing to tell him.  I'm gonna cancel the appointment and ask the med. equipment company to get me a nasal pillow.  Right now my nose is dry and bleeding; I have terrible allergies.
Please let me know how your progress is going, your story sounds similar to mine.

Martha-

Okay, this is a long one, but I really feel your pain!

Sorry to hear you're having so much trouble.  It is absolutely exhausting, isn't it?  I can tell you that many of the problems I was having were dramatically reduced when they sent me home with a new, smaller full face mask that fit much better.  I also took home a nose mask, which is the one I now prefer.  I really think I can get used to if I can just take care of the nasal congestion I'm having.  I have allergies and mild asthma, so I really understand what you're going through.  (Did you know there is an allergy filter that fits on the back of your machine?  It goes in first, then the gray sponge.)  A heated humidifier on the machine can help as well.

I've been using Nasarel, a steriod nasal spray, for the last several days (takes several weeks to start working) and I use Qvar, an asthma inhaler, also a steroid.  Today, I bought a nettie pot at Walgreens after having read about those at The People's Pharmacy online.  A friend also has had good results using this as a nasal rinse.  So, we'll see if that helps.

You may also have read in my earlier posts that I was having a really difficult time breathing out against the pressure.  Blowing against the pressure was a nightmare with the first mask and the first (non-auto) machine.  In addition, I also had only 20 minutes ramp time, which was just not enough.  On my new automatic machine, I not only have the auto but also 45 minutes ramp time if I want it.  These two factors have made a significant difference, although I am, as I mentioned, still struggling because of congestion.

The auto machine responds to each breath with the correct pressure and I can even ramp it over 45 minutes so I (theoretically) can fall asleep before it ever comes up to the correct pressure.  I've found that I really prefer not ramping, much to my surprise.

I have not yet had much success with all this new stuff, but I have slept a couple of different times for 1-3 hours with the nasal mask on.  That is a heck of a lot more than I was doing before.  

I tried Ambien the other night, thinking maybe if I was relaxed a bit more I could sleep.  That's only the third time I've ever taken a sleep aid and I can tell you it did nothing for me - either in terms of sleep or in getting past that feeling of suffocation I keep experiencing because of the congestion.  I'm considering asking for a relaxant of some kind...but that won't really help the congestion, so I'm not sure about that yet.

If you're new to this whole business, like I am, I can tell you that I have benefited tremendously already from reading everything I could in the forums about how to wear the mask, including not tightening it down too much.  I've found a lot of comfort in everyone's postings and feedback.  I am also just giving myself a break and doing this as gradually as I need to.  

I still have hope that this will work out, although that hope waxes and wanes, for sure.

I'll also tell you what others told me in response to my posts - be persistent.  I was ready for battle when I went back to the sleep clinic - particularly because they had been treating me like I was cutting into their day.  I am happy to say that I was very pleasantly surprised when, instead of blaming me for being a problem, they immediately identified several problems that could be addressed.  I can't tell you how much better I felt after that appointment, so you might want to take a few minutes to talk with your doctor.  Don't take this all on yourself.  You need some help from the professionals right now.

Take it slow, hang in there, and keep us posted as to how things are going.  Remember there are a lot of people who have gone through exactly the same thing we're going through.  That's about the only thing keeping me going some days, but it is a great comfort.

It's been two weeks now so I thought I'd update.

I can't say I wake up every morning ready to run marathons as some people describe their experience, but I am sleeping through the night and my daytime dozing has ceased, which is one of the main problems I had hoped to correct.  It had become an issue at work which is not good.

I almost feel guilty that I have not experienced some of the pains folks like Christin and MarthaCL have and I hope they are able to work through it.  Much of what I have read indicates that it takes some time for many to see success, but most at the very least reach a point where the benefits far outweigh some of the annoyances.

There are a few things I still deal with that I hope will fade with time.  Though I sleep through the night, I still have the bloating some days which contributes to morning back pain.  I have learned to sleep on my side, though, which the nasal pillows mask I have allows me to do.  The hose comes off of the top of the mask and swivels there rather than in front of the face.  That seems to have reduced the bloating and back pain for me.

The drawback of the nasal pillows, though, is sometimes the opening of the nostrils are sore.  You can adjust the mask to help and in the morning I use a little Carmax (?) lip balm to soften them up.  The kind that comes in the little yellow tin.  Works great.

If the nose or full-face mask feels suffocating or if you're looking for a little more freedom of movement I recommend trying the nasal pillows.

I've also had some runny nose issues but haven't been able to determine for sure whether it's just my normal allergy stuff or if the CPAP machine is contributing.

Just some info. for you.  Hope it's useful.


_________________
Bob L.
-----------------------------------------------------------
Respironics REMstar® Auto M Series
with C-Flex™ & Humidifier
ComfortLite™ 2 - Nasal Pillows Mask
Setting: 18 cm H2O
-----------------------------------------------------------

I am not familiar w/Carmax. HOWEVER, be sure to look at its ingredients!!! NEVER use a petroleum based product in or close to your nose. Ayr Saline Nasal Gel is a good product, safe to use in and around the nose.  

Nasal pillows style masks blow the air much more directly into your nasal passages and usually take some adjusting to including the use of the Ayr Saline Nasal Gel until the interior mucus membranes can "toughen" up to the direct air pressure.

For many of us the air from the heated humidifier unclogs our stuffed nasal passages and sinuses in short order. On my worst night, it took a couple of minutes of fighting to breathe thru my nose, every so many breaths having to exhale thru my mouth and then my nasal passages and sinuses cleared and I could breathe the rest of the night just fine w/no more problems.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.