New to CPAP and Struggling

[flowergal3]

I am so glad I have found this site; there is so much great information on here and I have so much to learn. I have only been using my machine since December 31, 2010, so I am very new to all of this. My first and second sleep studies were done in November and December and I have yet to see any results from them. I was told I have moderate sleep apnea with only 17 'events' (?) per hour and my oxygen saturation was around 80. I'm hoping to learn more when I actually get to see the doctor in a few weeks.

So far, the biggest problem I'm having has been the masks. I've been pestering the guy who set me up with the machine quite a bit and he's sent me home with four different ones so far, two nasal masks; a Mirage Micro and a Mirage Activa LT along with two full face masks, a ResMed Mirage Quattro and the other a Fisher and Paykel Forma.

I had no luck at all with the nasal masks, there is just too much pressure on my upper lip under the nose. I'm down to battling between the two full face masks right now, and I guess I'm leaning toward the ResMed Quattro only because it doesn't leak as much. The first Fisher and Paykel Forma was in a size small, but it deformed my face too much, so on my second visit the tech sent me home with a large (he said a Medium may have been better, but couldn't find one in his stash.)

The large mask is more comfortable, but I think it may be too big as it leaks around my chin and eyes and I guess I'll have to go back and see if he can find a medium. I have to make up my mind SOON though, and don't know how much to pester the DME as I only have until the end of January to try out different masks for insurance purposes.

Probably my biggest problem is I'm a side sleeper. If I have the straps too loose, of course there is leakage, and once I tighten them to stop the leaks, then I have facial pain. I tried making a homemade liner and that helped a lot (found the pattern on the site, thank you!) but I'm still tossing and turning most of the night.

I wake up at night sometimes feeling the machine is force-feeding me air so I shut down the machine and have it go back to ramp stage again so I can try to get back to sleep, but it's startling...is this normal for beginners? I'm not sure how much quality sleep I'm getting yet, but hope it improves with time.

I know I'm being 'Goldilocks-ish' but I do feel a bit better already and really want this to work. I know it's not normal to sleep with a plastic contraption on one's head and I know it will take my brain sometime to get accustomed to it, but I guess my question is this: does anyone have a mask that doesn't bother them, i.e. didn't pinch, dig in, leak, etc. or is it just a matter of learning to live with it?

How many masks have you gone through before you found the 'right' one? And, anyone have a bed pillow for side sleepers they have found that works?

Thank you!

[Julie]

You're not Goldilocks! You just started and trying hard to get 'with it' - a lot better than others, believe me ! Definitely get the DME to find you that medium size mask, but also look at the newer Quattro (FX) vs the older version you probably have. You shouldn't have to overtighten to not leak (and a few small leaks are not terrible anyhow). Have you looked into a Pap Pillow (they're advertised on the site, or do a 'search' here) because they're specially made for side sleepers. You didn't say what your scripted pressure is, or what your machine is set at, and those would help us to help you with the whole thing, including the ramp feature. I won't say anymore until you write back, but take it easy, you are very new and things will work out in time.

[sleepnationtv]

Hi,

Here is a link to our site that has video reviews of a lot of different masks. It may help you.
http://www.sleepnation.tv

Good Luck
Dane

[robysue]

flowergal3,

As far as masks are concerned, Goldilocks has it correct: You want the mask to be just right. Not to <fill in your favorite negative sensation>.

Some folks go through dozens of masks before finding one that really works for them. And finding the right mask is a critical part of making CPAP work. So DON'T apologize for being a Goldilocks as far as mask-fit is concerned.

Notably one type of mask seems to be missing from the types you've tried so far: A nasal pillows mask. Since you found that the main problem with the nasal masks was too much pressure on your upper lip (and NOT mouth breathing), you really should give something like the Swift FX for Her, the Swift LT for Her, or the Opus 360 a try. While the idea of having a mask that seals directly against your nostrils may strike you as really weird or uncomfortable, many people find these masks put far less pressure on that tender upper lip area than nasal masks do. And they have far less of a presence overall on your whole face than either the nasal masks or full face masks do. I'm surprised your DME hasn't offered a nasal pillows mask for you to try.

I'm a side sleeper and I can't imagine trying to get comfortable on my side in a full face mask with a regular bed pillow. They do make special CPAP pillows with cut-outs for the mask to hang into. I don't use one because with the FX, I don't need one.

[kentoboo]

I use the Swift FX as well and find that I can sleep my side just about as easy as before. I actually have to reach up and feel the mask to see if I still have it on. I whiten my teeth and between having the trays on overnite and the mask, I did not think I would be able to sleep. I slept well, it is amazing what we can get used to, it just takes time. Hang in there, it will soon become second nature to you!

[flowergal3]

Thank you Julie, Robysue & Dane,

My pressure is set for 8-15 with a Ramp time of 30 minutes. I was told by my DME that I don't need to go into the clinical settings, but I did find out how to from this site. I was a bit surprised to see the EPR Expiratory Pressure Relief was not enabled, but I didn't tinker with it. There was an AHI of 7.7 listed in the clinical settings, too. I don't know if that's good or bad. I felt a bit like a sneaky little kid, digging around where I shouldn't be, but I'd rather be informed than not.

I'm assuming when I see the doctor in two weeks that more of my questions will be answered, but it would be nice to know if I'm supposed to be kept in the dark about how the machine is working or not. I see many patients have access to their machine's data, and I wonder if that is the usual and customary thing or not?

I called the DME again this afternoon and he will get back to me on the Medium face insert and he asked me if I had ever considered a full-head mask which I haven't heard of yet.

Dane, I will be viewing the video of the masks, thank you very much! It's so helpful to know what's out there.

robysue, I'm relieved to hear I'm not being too picky! You're so right about the problem with pillows and full-face masks being a side sleeper. Right now I'm using a foam back rest under my regular pillow so I can try to hang the gear off the side of the foam which is all a precarious balancing act and which, of course, fails when I finally do fall asleep. My husband is putting up with me floundering around like a fish out of water looking for the Perfect Position for Sleep. Poor man, he's getting less rest than I am, would be better to go back to the snoring days, at least for him!
I will be certain to ask about the nasal pillows since that sounds like a very good option.

[Lizistired]

I agree with Robysue, try the fx for her. I tried on a nasal mask at my titration but it seemed bulky compared to the fx for the same thing. I tried to sleep with some mouth and nose mask but never got to sleep and it leaked air in my eyes. I asked to switch to the fx and went right to sleep. I sleep mostly on my sides and have no trouble with it. I have slept on my stomach with it. I don't even feel the straps.
I am experimenting with bed pillows. Mostly I use a contour pillow because the sides are flat so I can sleep near the edge of it and the pillow isn't hitting the mask and I'm not falling off of it. I also had some small pillows around that are getting some use now.

[Julie]

Hi again... First of all, you are not digging where you shouldn't be. What nonsense! It's your treatment and your life and you should be digging all you can, and from what you said in your orig. post I think an EPR setting might help with exhalation, make it less of a chore. Do not let the DME intimidate you or tell you that you aren't allowed to take charge of yourself. The majority of people here do use software to track their progress so they not only know what's going on but so they can intelligently either 'fix' it themselves or know how to ask for targetted help. You have the best machine on the market, so take full advantage of it by learning what it's all about, from setting up your computer to interpreting the results.

Unfortunately, your MD may or may not have answers for you - very many of them don't. All they want to know is whether you've been compliant, but very often know almost nothing about the finer points either of the machines, masks, or how to deal with problems around those.

The pillows may be a very good option for you, as long as you appreciate that the FF masks have a purpose, and that's to make sure you don't lose the Cpap air out of your mouth when you're asleep. You can't necessarily control mouth breathing then, but at least you can use a mask that lets you do it with no loss of therapy.

Most of us don't bother with the ramp at all beyond the first week, and find it a nuisance starting off each night at a pressure so low it's almost impossible to breathe at, and having to wait (in your case 30 mins) to be at the prescribed pressure. Once you get over that first blast of air (to me now it's not a blast, just a little puff) you'll be fine.

[Janknitz]

Imagine if you were a diabetic and they sent you home with a blood glucose meter that had no user accessible readings on it. You are supposed to test your blood daily and when you go to the doctor every month or three months, bring the monitor with you so the doctor can see the readings. Does that make sense? Well, it doesn't make sense for you to be locked out of the data on your CPAP machine either!

AHI is the "apnea hypopnea index" and an AHI of 7.7 means that your treatment is not yet effective. It should be well below 5. Knowing that you can begin to figure out WHY it is too high--is your pressure too low, are you having leakage, etc. How? You can obtain software by asking around on this forum, that will let you see the very detailed data your machine collects. And guess what, no CPAP police are going to come and arrest you. It's your machine, and YOUR health. If your DME or doctor disapprove of this, then you need to think about whether or not they are the best doctor or DME for you.

And if you need EPR to tolerate the pressure, then turn it on. It's there for patient comfort, and unless your pressure is very low to begin with (8 to 15 is not), it should not adversely affect your therapy. At a pressure of 8 to 15, you might feel like you are smothering when the ramp pressure starts at 4. If that's bugging you, turn it off. This is all about you tolerating the therapy so it can help you. Nobody cares more about your body than you do, and YOU need to know what's going on and having a say in your body.

I third the suggestion to try a nasal pillow mask like the Swift LT or FX. They are great for side sleepers as long as you can keep mouth breathing under control.

[bayourest]

I have only been doing this since November.....but when I got started a friend told me to be picky and demanding and he was right. I spent 2 hrs with a wonderful tech in the sleep lab today trying on masks etc. The DME was not helpful at all beyond "here's your mask and machine and we'll call you for compliance info."
I have not been through nearly as much as many on this forum and I have learned so much from reading this.
so keep trying to find the right mask and get into your machine for sure to get your data etc. The ramp can easily be turned down. I changed my ramp from 30 min to 5 min after a week or so and I raised the humdidity....small things but lead to increased comfort.

[robysue]

flowergal3,

While you're digging around in the clinician's menu (which you shouldn't apologize for since your DME locked you out of some mighty important PATIENT features), make sure that the SLEEP QUALITY setting is set to ON instead of USAGE. That way you will be able to get at the efficacy data from the patient menu every morning. Not only will you want to track your AHI (the apnea-hypopnea index, which is the fundemental measure of whether xPAP therapy is doing what it's supposed to), but you will also be able to get at your 95% leak rate each morning, which should help you figure out more about the leak problems. In particular, if you don't know whether you are a mouth breather, give the Swift FX for Her a try and the leak data may help to figure out whether mouth breathing is or is not an issue. [If mouth breathing is NOT an issue, I think the Swift FX may well go a long way in solving some of the mask issues.]

Also track down the ResScan software. Usually that involves finding a post by Uncle_Bob. It's well worth learning how to use; there's a lot of data---both about the apneas and hypopneas as well as the leaks that will be useful in helping you both adjust and make the most of your therapy.

Best of luck with the S9, it's a sweet machine. I used to have one. Long story, but instead of mask problems, I wound up being that rare person who had to have my Goldilocks issues with the machines themselves, and I really wish that I could have adjusted to it, but tickles in the back of my throat and recurrent dreams of stuffed geese led to the switch to the BiPAP.

[BusyLyn]

Many people say that they don't like the ramp feature, but I happen to like it. It's a comfort feature, similar to C-Flex. I'm able to adjust the starting pressure to my satisfaction from the regular setup menu on my PRS1 Remstar Pro. Can you do this on the various ResMed machines, or do you have to be in the clinician's menu? On one thing I do agree -- a starting pressure of 4 is a joke!

[jweeks]

So far, the biggest problem I'm having has been the masks.

Flowergal,

I think you just about said it all. If it wasn't for masks, CPAP would be a lot easier. Like you, I have gone through just about every mask in the book. I have a high cheek bone, so all the full face and nasal masks will either seal at the top, or at the bottom, but never both ends at the same time. For a while, I simply tightened them down until I had welts and strap marks all day long. That at least allowed me to use the machine, but it wasn't any fun.

The break-through for me was trying a nasal pillow mask. My DME told me that there was no way it would work for me due to high pressure and having nares that are slightly slotted. It took me six months, but I finally tried one. It was nirvana right away. I do have some challenges keeping my mouth shut, even when using tape. The net-net is that the nasal pillow mask is so comfortable that it is worth all the extra hassle in trying to keep my mouth shut, and the cost of frequent replacement of the pillows.

Being a side sleeper is good. Many folks have a much easier time breathing with far fewer events as opposed to those who sleep on their back. Again, it is worth the effort to get your mask to work while sleeping on your side due to the benefits to your breathing in that position. What seems to help me a lot is a sculptured pillow. I have a cut-out by my mouth so it doesn't hit my mask, and I have a depression cut in where my ear goes.

-john-

[gm60]

I'm also a new user, started out with the Swift FX which I like but am a mouth breather and waking up with cotton mouth a few times a night was too much for me. Traded for the liberty, got it to fit fine without leaks but during the night I would move the mask (side sleeper) and the nose pillows would shift and then leak.

Being a light sleeper and having to deal with this a few times a night was killing me.

I stopped using the CPAP last Friday, I was just too tired to continue without sleep.

I have finally gotten the DME to order me the Quattro FX. They are reluctantly going to change out my resmed PR1 with CFlex for an S9 Autoset ( had DR write me a prescription for it). It has not been fun dealing with the DME.

Will be off CPAP until the new equipment come in.

Give the Swift FX a try, I liked it and wished I had kept it and used a chin strap or the head cap verses getting the Liberty.

Good luck!

[flowergal3]

Thank you all for such great replies! I'm definitely going to ask my DME for the Swift FX and see if this works for me. I'm not sure if I can keep my mouth shut or not; my doctor prescribed a full face mask for me; but if the nasal pillows work, I'll do what I must to keep my trap shut! I'm also going to look into the CPAP pillows, too---I think having a pillow made for side sleeping will be a huge help so I'm not beating the bajeebas out of my poor pillow every night.

I downloaded the ResScan software and bravely took my SD card and looked at results. You are all so right, there is a lot of information available on that machine. I'm quickly getting over the dread of ticking off my DME and his 'Don't touch this because I said so' syndrome....this site has empowered me already. It's my health, so why shouldn't I be looking at it? I'm going to have to learn how to decipher the info, but I see there's a good tutorial on this site for that, too.

I had a rough night last night, managed to stick it out on the machine for 4 hours, but finally gave up at 5AM. Too much leaking and then the usual ritual of tightening it and sleeping until it hurt too much and loosening, and seating the seals, blah, blah, blah. I'm finding myself dreading bedtime again, and putting off going to bed. I know good sleep hygiene is very important. I have to stay in a routine, most especially now.

I haven't heard from my DME yet today, yesterday he said he'd call in the morning...I hope I don't end up like a silly old woman sitting by the phone waiting for the proverbial 'call'.

I was a bit sad to read on some posts here that most doctors don't really know that much about sleep apnea. I don't know why that surprises me, I guess I thought a sleep specialist would be interested in helping their patients, but there I go again, being naive and thinking that someone else will care as much about my health as their paycheck. I'm not sure what my doctor is like yet, really, since I've only seen him once before the sleep studies, but he did do a more thorough physical and personal info exam than I could ever remember having before. I have to see him next week, so I guess I'll find out more about his character then.

The DME is a nice enough person, but I was surprised that despite being a respiratory therapist for over 20 years, he's never worn any sleep apnea masks or tried breathing with a machine. I found that out by asking him which mask he thought was most comfortable and asked how to get used to breathing with the machine when the pressure rises and he said, "Don't know. I don't have sleep apnea, so I couldn't tell you."

Wow. I can see being naive is my biggest problem! I guess I thought he'd at least try one on at some point (and yes, I know, he'd have to sterilize it, which is extra work, lol) so he knows how to help his patients. I guess I shouldn't freak out too much, after all, there are many OB-GYN's who are men or never had a baby, or heart surgeons who have never had a heart surgery, but is it asking too much to stick a mask on your head and see what your patients are up against? No wonder the DME crammed the mask on my head and cranked it down tight, he has no clue it isn't comfortable that way. And silly me, I thought it had to be that tight to function properly 'because that's the way the tech adjusted it.' Oh, brother. He also stresses every time I see him that sleep apnea is 'not an emergency, you don't need to call 911 if the power goes out'---ok, yes, I know I can survive a night without the machine...but this is serious, darn it.

I know how much better I feel when I only get a few hours of sleep with my CPAP machine and can only imagine how much better I will eventually feel once I get the masks and pillows figured out! Just to be rid of the constant morning headache that had been with me for almost 20 years is a blessing I don't take for granted one iota. In fact, I woke up the first morning thinking something was missing, and after awhile I figured out what it was, my headache was gone.

Thank you all for 'waking me up' to see I have to take charge here. I am so looking forward to better health and so thankful for all the help on this journey.