Sleepless newbie - help please

OK, here's the full bio:

- 45yo lifelong asthmatic, currently on zafirlukast (Accolate) and Symbicort, which has managed asthma nicely
- Nose completely blocked for breathing most of the time since a child - finally looking into polyps for that
- Diagnosed with apnea several months ago, with some crazy number like 90 on my back and 30 on my side
- Fairly active athletically, although middle age is slowing that down
- A bit overweight - probably 20 pounds over college/high school weight
- Have snored forever, and have only been able to sleep on my stomach/hip for the past 5-10 years
- Never had trouble falling asleep, but went through a period over past 2-3 years where I'd wake up around 2am and not be able to fall back asleep for hours
- Completely off caffeine for past few months, very occasional chocolate (as early in the day as possible), salbutamol inhaler only when exercising
- At present I wake up every hour or two, although I can generally get back to sleep fairly quickly (unless it's after about 5am)
- I don't really nap (never have), and don't really fall asleep during the day - really just a bit spacey

I have a high-end AutoCPAP that appears to do everything but sing me to sleep (DeVilbiss Intellipap with SmartFlex and a Respironics ComfortGel Full mask). Doctor prescribed a setting of 6 on a basic CPAP (which I returned because it was way more expensive than getting a better one elsewhere), right now I have the AutoCPAP on 7. Heater/humidity scale is 1 to 10 - I find 3 leaves my mouth dry but 4 leaves my face coated with water. Haven't really mastered the "SmartFlex" part of the settings yet.

Here's the issue: I can't tolerate this thing for more than a few hours, and sometimes I can't fall asleep at all with it on. I've resorted to medication every few nights just to stay sane (temazapam, ativan, ambien), and on those nights I generally sleep much better without fussing with the CPAP machine at all. But of course I'm sort of a well-rested walking zombie the next day.

From reading this and other forums, one theme that comes up is that nasal pillows for CPAPs are much more commonly tolerated than full masks. But with my nose totally blocked most of the time (despite nasal irrigation, etc.), that's not an option for me. I'm trying to meet with an ENT to discuss polyp surgery (if that's even what the issue is), but I live in Ontario and the referral process takes 3-6 months.

Anyone have any advice for tolerating full face masks? Or for anything else I'm missing?

I'm barely able to think straight most days, and am now basically running 10Ks every other day just to try to exhaust myself into a coma for a few hours at night.

Hi, you have a lot going on there, but one thing you could try would be to get your pressure (7) moved up - it's barely breathable as is and almost no one is prescribed it as a 'target', so even moving up a notch or two (one at a time with a week's trial at each) is unlikely to do any damage, very unlikely. And I wonder if the humidifier problem is due to your gasping for air and ending up more dry than necessary, so if your pressure is higher, that could be helped.

Thanks, Julie.

On the machine, there's basically a lower limit and an upper limit, so if I understand it right what I'm doing is setting the lower limit at 7.

I'll try 8 or 9 tonite.

Maybe try a Hybrid mask? I couldn't sleep with a FF mask, and my nose doesn't work well enough to use a nasal mask (plus I have severe claustrophobia reactions to being forced to breathe through my nose only).

I found that a Hybrid with some modifications works well for me. I cut off the chin flap and use an elastic band to help hold the nose pillows in.

How long have you been using the APAP? I can take quite a while to tweak and find the right settings.

The things that helped me the most were: getting a different mask and then modifying it; playing with my pressures and EPR (Smartflex) settings until I found some that worked really well.

I was surprised that raising my pressures gradually helped a LOT. The doc initially prescribed 4 to 10, now I'm at 10.4 to 13.8 and my AHIs are usually 0 to .2 every night. But I couldn't mess with the pressures until I was used to it a little and had a mask that was working well. I was amazed at how much better I started sleeping once I started raising my pressures.

Weezy

I'm not familiar with your machine--is it possible to get data from it? If so, it would be very interesting to see what your numbers look like. If your pressure was prescribed at 6, I would be hesitant to raise you lower number too much. You say you have your machine set at 7, but with an auto machine, it should be a range, say from 7-10 or 7-20. Do you know what your range is? If it is not a range, but simple 7, then you are running your machine in cpap mode (most auto machines can also run as straight cpap). If it is truly in auto mode, and you can view your data, you should look at what your average pressure is and what your 90% pressure is. This will help in fine-tuning your settings.

As for the mask, I would suggest trying a hybrid mask, as they cover much less of your face, but still allow you to breathe through your mouth.

Also, a new mask has just recently come out in the US (don't know if it's in Canada yet). It is the Mirage Quattro FX by ResMed https://www.cpap.com/productpage/resmed ... dgear.html It is still a full face mask, but does not have any forehead piece.

There is also an oral only mask available https://www.cpap.com/productpage/fisher ... -mask.html

While it is true that many people on cpap tend to do better with nasal masks/pillows, that does not take into account the people like yourself who are unable to breathe through their nose for one reason or another. If you are unable to breathe through your nose for an extended period of time, then I would definitely be looking into masks that allow you to breathe through you mouth. That is the only way that cpap will be effective for you. And since the negative effects of NOT treating are so huge, you definitely want to treat your sleep apnea. My best advice is to just keep looking and keep trying different masks until you find one that you like and can tolerate. Some people go through many, many masks before finding one that they like. Just don't give up! You can do it!

Hi and welcome! You have a great machine, and it does provide full efficacy data for you to see what is going on. Do you have the clinician's manual? If not, PM me and give me your email address and I'll send you a copy. Are you using the Smart Codes to view your numbers? Did you buy the software to see more detailed information?

Take a moment and go up to the User Control Panel (top left) --->Profile--->Edit Equipment and then choose your gear from the pull down menus. Then choose to show your equipment in TEXT, not pictures. This will put your equipment at the bottom of each post your write so others know what you are using.

I agree with Julie that your pressure is low. If you were titrated at 7, I'd set the pressure range from 6-10 in auto mode and see how that works for you. Once you do that, you'll be able to see what your 90th %tile pressure is, and if it shows you are hitting the high end of the range for long periods of time, you may need to bump it up a bit more.

Smartflex and the Rounding on the DeVilbiss can make your pressure changes smooth and easy to breath. With a low pressure, you might want to keep them low. My pressures are set at 7-10 and I use the Smartflex set on at 2. Rounding makes the transition from pressure to pressure very smooth, and I have that set on iRounding at 1 and eRounding at 2.

If you have Delay on, you might want to turn that off. With such a low pressure it isn't offering you much and may contribute to some of the issues.

As for your congestion, try nasal rinsing and you might want to look into cpap aromatherapy. I am coming into my seasonal allergy period, and I have had a bit of congestion. I am using Pur-sleep's essential oil with eucalyptus and it has really helped. I put a drop or two on the disk and leave it just next to the intact filter at the back of the machine. Because the IP sits atop the humidifier, I had to use a tall holder for the disk to be near the filter, but it is easy enough to rig that.

I don't use a FFM so I cannot speak to those or offer advice. I know masks can be 90% of the effort to make this therapy work. I was just plain lucky to have two masks that work nicely right away.

If you need any additional help with your DeVillbiss, let me know.... Best of luck!

Hiya, posting your equipment by make and mod will assize and attract specific comments. The difference being saying having your head examined or saying looking up your nose. I understand these days the Docs can stick a camera anywhere in your body and do remote control surgery. Even little cameras you can swallow. On topic, I am a mouth breather, as much as like the Swift LT, it will not work for me. I use a total face mask and it works fine. Everyone is different. I agree and accept my mask just like wearing my PJ's. Creatures from the ID? ( Old SciFi movie reff.) I have also taken my mask off in my sleep once or twice.You are your best moderator of your results, not some Doc.

Wow.

A little overwhelmed at the degree and immediacy of response. You folks are great!

I got a bunch of stuff out of this:

1) Changed my sig to have the machine in it - although I'm not sure it's the "travel" version, but that was closest.
2) I love data, and I know the machine spews out tons of it, but I have no idea how to get it out (except through the menu on the machine itself, which provides very limited data). Will definitely send a PM to help figure that out!
3) Higher pressure. The machine has a range (lowest-highest) which is currently set at 7-20. I never changed the highest setting. It sounds from many of your comments like the highest one is important, but why? When does it hit the high? For now I guess I'll cut it to 15 anyway.
4) Test different masks. I'm actually pretty happy with the mask, although I guess not since I rip it off after a few hours. But it is about as comfortable as a piece of plastic hugging your face is going to get. The hybrid mask sounds like a good idea though - less coverage area.

Thanks again! Really terrific info. Massively more knowledgeable than the technician who actually showed me that first CPAP mask last year.

OntarioKevin,

I bid you a sad welcome to the CPAP & insomnia club.

You write:

OntarioKevin wrote: - Never had trouble falling asleep, but went through a period over past 2-3 years where I'd wake up around 2am and not be able to fall back asleep for hours
- Completely off caffeine for past few months, very occasional chocolate (as early in the day as possible), salbutamol inhaler only when exercising
- At present I wake up every hour or two, although I can generally get back to sleep fairly quickly (unless it's after about 5am)
- I don't really nap (never have), and don't really fall asleep during the day - really just a bit spacey

So you've got some experience dealing with the ol' insomnia beast and some parts of good sleep hygiene already in place---the no caffeine, limited chocolate, and no real naps are all good steps in the right direction.

Here's the issue: I can't tolerate this thing for more than a few hours, and sometimes I can't fall asleep at all with it on. I've resorted to medication every few nights just to stay sane (temazapam, ativan, ambien), and on those nights I generally sleep much better without fussing with the CPAP machine at all. But of course I'm sort of a well-rested walking zombie the next day.

While the rest of your post asks for help in dealing with mask issues---which is absolutely critical in making CPAP work---I think you also need to deal with the insomnia issues too.

In particular if you are lying in the bed for "a few hours" trying unsuccessfully to get to sleep on nights that you don't take meds, then you are aggravating the insomnia issues and making it harder, not easier, to learn to fall asleep with the mask on. As someone who has been dealing with my own difficult struggle with adapting to CPAP and at the same time struggling with CPAP-induced insomnia issues I have great empathy for what you're going through. You are not alone in this struggle.

Some things that may help you learn how to both build your ability to tolerate the mask itself and learn to fall asleep with it on:

• Get really serious about the sleep hygiene. Among other things this means:
  • Don't go to bed unles you are feeling sleepy and note that feeling sleepy is not the same as feeling tired or exhausted. Try to maintain the same WAKE UP time each day regardless of how little or how much sleep you actually got at night. This will help your body begin to get sleepy at the appropriate time the next night.
    
    Don't lie in bed for more than 30 minutes trying to get to sleep. If you've been in bed that long and you're not yet alseep, get out of bed, leave the bedroom, and go do something else---a quiet activity that will not further stimulate your brain---in another room until you start to feel sleepy enough to go back to bed and put the mask back on and try again. Repeat the process of going to bed, trying to get to sleep for what you think is 30 minutes or so and getting out of bed to do something else until you start to feel sleepy as many times as needed.
    
    If you wake up in the middle of the night and are unable to get back to sleep in a timely fashion (say in less than 30 minutes or so), get out of the bed and leave the bedroom. Again, do something quiet and relaxing until you start to get sleepy enough to go back to bed and put the mask on and try to get back to sleep.
    
    Turn the clock so that you cannot see it when you are in bed. Watching the clock when you are trying to get to sleep just feeds the old insomnia monster. Judge the "30 minutes" solely in your head---if you think 30 minutes is up---then it's time to get up; it really doesn't matter if you've badly misjudged how long "30 minutes" really is when you're trying to get to sleep. If you think it's been "30 minutes" then it's been too long and it's time to get out of bed and do something in another room until you start to get sleepy.
    
    Reserve the bed and bedroom for sleeping and sex and NOTHING else. Do NOT watch TV in the bedroom. Do NOT use the computer or cell phone in bed. Do not lie in bed listening to the news on the radio. Don't listen to loud, wild rocking music that's going to wake you up. Don't read in bed. (Some insomniacs can successfully read in bed, but many cannot. But definitely do NOT read WORK related material in bed.) You want your brain to associate being in bed with being asleep.
    
    Cut down on or eliminate TV and web browsing near bedtime; don't do any work related reading near bedtime; don't text message near bedtime. It's really important to give your brain a good hour or two of time to break away from the job and all the electronic gadgetry that stimulates us all day long. Warm baths are nice. Low lights are also nice. Reading real books that aren't too stimulating (and are NOT job related) help some people, but for some folks (including me) reading winds up being a stimulant.
    
    Increase the physical activity in the daytime (if possible), but make sure you're not doing it too close to bed time. Yes you're tired. But sometimes a small start can be done at the edges. Take the stairs up a flight or two of stairs instead of the elevator at work. Or park at the far edge of the parking lot at the grocery store, for example. Try to get at least a bit of natural light every day too. (That's one that I'm finding really hard here in Buffalo. You'll find it hard where ever you're located in Ontario too, I'm sure.)
  Work on acclimating yourself to the mask and machine. Do these things FAR away from bedtime since they are likely to cause your brain to (temporarily) build an association between CPAP and WAKE UP. But they'll also help you develop a better feel for how the CPAP machine and mask combination is supposed to work and feel when it is on your face and turned on. It will also give you some practice time in dealing with mask leak issues when you are already wide awake and can more coherently come up with workable solutions.
  
  • Move the CPAP machine and mask out to the living room or den and put it on while you watch TV or read. Keep it on for several hours while your favorite shows are on. But be sure that you take it off for at least an hour or two before bedtime so that you can move it back to the bedroom and give yourself a good couple of hours of mask-free time to unwind and become sleepy before masking up for the night. The idea is to help you get used to how the machine feels on you face.
    
    Same idea as before, but start slowly: Only make yourself wear the mask 30 minutes the first day. And increase by 30 minutes each day until you're wearing it for say 2 1/2 hours every day during the time you're awake.[/i] And keep doing this until you really no longer notice the mask is on your face as being an "irritant" any more.

Actually it is the lower (minimum) pressure setting that is the most important when you use a machine in auto mode.

You want the minimum pressure at or maybe a cm below your titrated pressure so that it doesn't take too long for the machine to get up to the therapy level you need to deal with events. The maximum pressure is not as important unless you have a lot of centrals and in some people a higher maximum pressure can induce centrals. Of course, there is always the possibility that your titrated pressure is not right since it is based on one abnormal night.

With your auto, you can see what events you are having and at what pressure(s) so that you can kind of titrated yourself nightly. Someone with an Intellipap auto will help you with getting data for your machine online or via software should you choose to purchase it.

I like a narrow range (with the minimum set at or very near my titrated pressure) so that the machine doesn't run away with itself some nights. It gives me the pressure I need and a little room for when I need a little more.

OntarioKevin, welcome! Lots of help here, I couldn't have done it without the good people here. It sounds like your pressure may be to low, in which case it is the lower number that is important, 7 is very low, get the softwear and try raising the lower to 8 for a few nights. The idea is to have the bottom pressure high enough to prevent most apnea events, and rely on the machines higher range to take care of the rest. That way you are not chasing every event. most of us using APAP do better with a narrow range, I use 9.5- 15, which may be a little wide for some, but works for me.My 90% pressure is around 11 , I rarely hit 15. When you have the softwear you will be able to see if you are to low or high and adjust the range accordingly. I alternate between full face mask and nasal pillows, a lot rip them off at first, if it's pretty comfortable and not leaking, give it a while, there are also lots of mask fixes and tricks if you are having a specific problem. If its just the alien on your face, you will probably make friends with him try taping the alien to your face so it wakes you if you rip it off. Sleep well!

Thanks again for all of your help today! Really remarkable community.

Tonite I'm drug-free and masked up at a higher pressure - hoping for the best!

Hi Kevin, and welcome to the forum where the majority have found kind and support leading to healthy sleep.
A few things to consider:
Dry Mouth
CPAP air from a full face mask, which you naturally need, will dry your mouth out more that with other types of masks. You need more humidity. At lower pressure condensation (we call it rainout) is worse, and more difficult to control.
Try one of the hose covers (e.g. from forum member padacheek http://www.padacheeks.com- and if that does not let you get more humidity, get a heated hose -- I got mine at http://www.sleepzone.com.au -- click on "heated cpap tube" on the left to see what I mean. Some people make their own hose heating systems, personally I'm wary of that -- but that's me.
When I was running at a pressure of 7, a hose cover was not enough for me, I have been using the same heated hose for more than 5 years. By isolation or heating the hose you make the air capable of carrying more humidity -- which you seem to need.
Pressure
Higher pressure is not a panacea for everyone -- some do need lower pressure -- and actually do worse and sleep worse when pressure it too high. Your best way of finding the pressure you need is tracking your sleep quality and results -- after you've solved the other issues.
Understanding Data
Devilbiss has "On demand Webinars" about APAP therapy and understanding APAP data http://www.devilbissclinicaleducation.com/ -- I highly recommend them. Anyone can register -- or could at least when I did two years ago.
APAP type, or CPAP
It is a fact of life that different APAP's go about adjusting the pressure differently, and there are some people that will not do well on some machines. It is also a fact of life that rather a lot of people do better when the pressure is fixed, since the machines' varying pressured cause arousals. This is something you will have to try and track on your own -- nobody can tell you how it is (or will be) for you.
Mask
I too prefer the Hybrid to the other full face masks I've tried (I tried 3 others).

Thanks, Ozij.

Pretty good success last night with the simple advice here of raising the pressure. AHI 4.0, 90% 11.5. I set the machine for 8.0 lower limit, but raised it during the night to 9.5.

Big red hump on my nose this morning, but I kept the damn thing on all night for the first time ever!

Good for you! Progress! Don't let the red lump get out of hand, try adjusting the mask, or maybe a liner, check the WIKI for specific fixes, you don't want to develop a sore. Keep track of your data, one nights worth is not enough, look for trends over a few nights or a week. Cheers Kathy