New to therapy, lots of long winded questions...

[wil]

Hi all... Thanks so much for all you do, both technically and emotionally! I've been lurking for a couple of months, and keeping an eye out for my questions but haven't seen too much on them. I'm sure they're here (in the thousands of pages of info), but I can't find them.

I've been using xPap for almost exactly two months. I was diagnosed with an AHI >100, and was prescribed a machine (pressure set at 15 cm) and a full face mask. I was originally sent home with the machine (see below) and a FullLife full face mask. This gave me severe problems with the skin on the bridge of my nose breaking down and deteriorating. I was so happy to begin to sleep I ignored it until it got too bad to ignore.

The RT at my DME suggested I try a nasal mask instead, and sent me home with a ComfortGel Nasal mask and a chinstrap, which I've been using for the last six weeks or so. It is beginning to leak more and more over time. There were no appreciable leaks in the beginning, but they have begun to get worse and have begun making all sorts of noises (from typical mask burp to high pitch vibrations) which wake me and my sleep partner up. Further, since going from the full face to the nasal mask, I find that I can not sleep on my back. Just as I relax I can feel my palate collapse blocking exhale (which wakes me back up and I have to start over).

Now, for the questions.

1. The chinstrap seems like a stupid idea to me. Sure, my jaw is held closed (if I put it on tightly), but that does nothing to keep my lips securely closed at my high pressure level. It doesn't reduce mouth leaks when I use it but I have noticed that my teeth ache if I don't use it. Is that normal? Is there a better solution (and don't mention taping, I'll go back to not sleeping first)?

2. Is the fact that I can feel my palate collapse when on my back (mentioned above) indicative of the fact that I need to be using a full face mask as opposed to a nasal mask? Or does this mean I really need to lobby for bi-pap? I'm not sure if negative pressure would keep it from collapsing either, and I really don't want to have to pay for another sleep study to determine this...

3. I've been waking up with a stuffy nose. If I wake up on my right side, my right nostril will be completely blocked, same with left side). This makes it difficult for me to get back to sleep when I wake up after four or five hours of sleep. Is this indicative of the fact that I need to go to a full face mask?

4. When I was using a full face mask, I always woke up with a completely dry mouth, even with the humidifier turned all the way up. Is there anything I can do about that?

5. Against prescription, I have changed my software setting from CPAP, 15 cm to APAP 15-18 cm. I'm showing a 90% at around 17 cm. Is this dangerous, or is there any reason I shouldn't do this? Is it possible that 15 cm was sufficient for my full face mask, but not for my nasal mask? Do these have different prescriptions commonly? When they did my study, they ONLY used a full face mask.

6. To whom should I be complaining? The sleep clinic (at the hospital where I'm employed) or the DME? Is it reasonable to expect the to refit me for a mask (making three fittings over two months), even if I've had my current one for six weeks?

7. How long does it take for most patients to settle into their equipment and routine? I mean, to really iron out all the kinks and get the proper interface and get it working properly, figure out the leak situation, fight rainout (fortunately not a problem I have), that sort of thing? I use therapy every night religiously, but it still is a hassle. Usually when I'm awoken it's because of the equipment, not the symptoms it treats...

I know this is an awful lot to ask... I'm very eager for this treatment to be successful. The surgery is not really an option for me (unsuccessful for my mom and my brother who happens to be an ENT doctor!). I'm sleeping so much better than I used to sleep, but I know it can still be significantly better.

Thank you all so much for the way you support one another and for the information you provide. I can't wait to be able to give back the way you all do, once I get this thing figured out for myself!

Wil Sutton

[Julie]

Hi, welcome to the forum. Your questions are quite normal and not too long (at least you are asking, which more people should do!). In no particular order, are you aware that sleeping on your back is the worst position you can use as it encourages more apneas? They may have had you do it for the study, to see what numbers you arrived at that way, but otherwise you should do whatever you can not to sleep that way (and therefore won't have to worry as much about your palate). I do think your pressure is on the high side, though if that's what you were prescribed, I'd talk to the MD about it. The thing is, with or without a FF mask (or strap, which is not much help for the reason you mentioned) a pressure that high will get your mouth open, and very possibly dry, so I'd definitely see if you can get it down even a bit (e.g. 13-17 vs 15-18) just to test out whether you still feel fine but with fewer "side effects". Cranking the humidity can cause nasal congestion whether or not it helps dryness, so keep that in mind. If anything, a lot of people find that going to a FF mask often requires higher pressures to achieve the same result... not sure why this would be though - maybe someone else has that answer.

Complaining to DMEs is more often than not a lost cause, though on occasion (if you're lucky) you'll run into a knowledgable one... most seem to be very free with all the wrong info. I don't think your machine is 'data capable', allowing you to track your own progress daily on your computer as maybe the majority of people here do, and getting one would help you to really understand what's happening when on many levels. Your insce. co. likely won't go for it, and certainly most only pay for one new machine (of any kind) every 5 yrs, but if you can afford it, getting the right kind from Cpap.com could be a great idea - you can get 'bundles' - machine plus the right software & card reader - for less than individual pricing. The new Resmed S9 machines are supposed to be very good (I'm still working on an old one), but you need to be sure the model will not just show you "hours slept" (compliance) in the window, but have the whole pkge.

Finding the right mask in the right size, etc. can be a chore, but most of us have gone there a lot of times and have a drawerful of 'back-ups' we rarely, if ever, use, but it's worth doing to get it down properly.

[Redeye]

...I don't think your machine is 'data capable', allowing you to track your own progress daily on your computer as maybe the majority of people here do, and getting one would help you to really understand what's happening when on many levels. ...

Hi. I have the same machine pictured in the original poster's sig. My machine apparently is data capable since I have a copy of the 12-page reports with some graphs, AHI's, snoring index, etc. that my Dr. printed when I as there an brought the machine in with me. Thanks and good luck to the original poster. I am too new to help much with these questions but maybe trying some different full-face masks could help with the skin issue. They all seem to have different pressure points and some different materials.

Redeye

[DoriC]

Welcome, Julie has given you lots of good info and I'm sure others will chime in soon. It looks to me like you need and were doing OK with the FF except for the sore nose bridge. There are many tips here for helping with that, mole skin, Padacheek covers(she's a member),Bandaids,etc. It may be that you need to fit your particular mask differently or need a different size.You can use the Search box and see what you find. Also if you can't sleep on your side, some have put a tennis ball into a pocket tee shirt worn backwards to train themselves.(Hope that didn't confuse you?) There's lots of tips here about that subject too. Good luck and keep us posted.

[KatieW]

I can't address all your questions, but will tell you what I've learned so far.

An alternative to the Chin Strap is the PapCap. I've used it for several months now, and like it very much. It's cotton, and fits snuggly on your head, , and replaces the neoprene straps around your head. The chin strap attaches to the PapCap, and helps keep your mouth closed, as well as stabilizes your mask. I use it with a nasal mask, the Mirage Activa Lt, and Softgel (both cushions fit the same frame). My leak rate is zero.

http://www.pur-sleep.com/products/produ ... category=6

You may need to investigate head pillows, so your mask is not dislodged by the pillow when you sleep on your side. I use a PapPillow, others like a buckwheat, or foam pillow with cut-outs for your mask. If you do a search on head pillows, you will find lots of ideas.

Your aching teeth could mean that your straps are too tight, and/or your bite is being mis-aligned. I wear a dental guard, because I grind my teeth during sleep. I was told I might not need it after cpap, but apparently, I still do.

Perhaps you could try a different full face mask, they all do fit differently.

Congestion is a common problem, and there are many threads with solutions that have worked for people. Nasal irrigation, saline nasal spray, a non-sedating antihistamine (not Benadryl), prescription nasal sprays, etc. I occasionally take an antihistamine, since it's allergy season, but find a Air Purifier in the bedroom 24/7 is the best solution.

For dry mouth, my dentist recommended Biotene Dry Mouth toothpaste and mouthwash. I drink lots of water during the day, and have stopped caffeine because it disturbs my sleep.

Hopefully, others will address your other questions. Welcome to the forum. Yes it does get easier, just takes alot of experimentation and patience.

[echo]

Welcome to the forum!!

1. The chinstrap seems like a stupid idea to me. Sure, my jaw is held closed (if I put it on tightly), but that does nothing to keep my lips securely closed at my high pressure level. It doesn't reduce mouth leaks when I use it but I have noticed that my teeth ache if I don't use it. Is that normal? Is there a better solution (and don't mention taping, I'll go back to not sleeping first)?

Perhaps the chinstrap is stopping some teeth grinding.. do you normally do that? There's nothing that comes to me for this besides the chinstrap or mouth taping, but here are some additional ideas for mouth breathing: Links to: Mouth leaks - Air Leaks - Tape - DIY Guard. Looks like a full face mask is your best option.

2. Is the fact that I can feel my palate collapse when on my back (mentioned above) indicative of the fact that I need to be using a full face mask as opposed to a nasal mask? Or does this mean I really need to lobby for bi-pap? I'm not sure if negative pressure would keep it from collapsing either, and I really don't want to have to pay for another sleep study to determine this...

As Julie said, it probably means that your OSA is very sleep-position dependent and you need to figure out a scheme for staying off your back (there are many posts on that here). I don't see how a bi-pap would help.

3. I've been waking up with a stuffy nose. If I wake up on my right side, my right nostril will be completely blocked, same with left side). This makes it difficult for me to get back to sleep when I wake up after four or five hours of sleep. Is this indicative of the fact that I need to go to a full face mask?

See julie's post - HH turned up too high = congestion. if it doesn't resolve with a lower HH setting then yes FFM is your best bet.

4. When I was using a full face mask, I always woke up with a completely dry mouth, even with the humidifier turned all the way up. Is there anything I can do about that?

Chinstrap! Pap-cap! Anything to reduce/prevent the mouth breathing.

5. Against prescription, I have changed my software setting from CPAP, 15 cm to APAP 15-18 cm. I'm showing a 90% at around 17 cm. Is this dangerous, or is there any reason I shouldn't do this? Is it possible that 15 cm was sufficient for my full face mask, but not for my nasal mask? Do these have different prescriptions commonly? When they did my study, they ONLY used a full face mask.

You're probably mouth breathing or mouth leaking with the nasal mask, so the APAP is pumping up the pressure to keep your airway open to compensate for the leaks. Remember the sleep study only measures that particular night's events. Now that you're at home and monitoring your AHI levels, you will have a better idea of what your real needs are. Again it could be dependent on sleeping position! You MUST fix the mouth breathing/leaks if you want to use the nasal mask.

6. To whom should I be complaining? The sleep clinic (at the hospital where I'm employed) or the DME? Is it reasonable to expect the to refit me for a mask (making three fittings over two months), even if I've had my current one for six weeks?

Whoever will listens to you (first)! If you have questions about the pressure needs too, go with the sleep clinic. This is YOUR therapy, you must be refitted until you find the mask that WORKS for YOU. That might be 2 masks in 2 years or 10 masks in 4 days. Just make sure that when you're trying on the masks, you try them on with your 90% pressure, and preferrably lying down.

7. How long does it take for most patients to settle into their equipment and routine? I mean, to really iron out all the kinks and get the proper interface and get it working properly, figure out the leak situation, fight rainout (fortunately not a problem I have), that sort of thing? I use therapy every night religiously, but it still is a hassle. Usually when I'm awoken it's because of the equipment, not the symptoms it treats...

Depends on the patient! Some are just really lucky and get everything right the first time, others have more difficulty finding the right mask or the right pressure. Your most important ally here is your ATTITUDE. If you start off defeated, you will never get it to work. I don't think anyone masters anything new in one day, so CPAP is the same, it takes time. How much time depends on each person's particular situation, but also (in my opinion) how "agressive" you are in getting the right mask, getting your questions answered, and convincing yourself that this is not a pain in the rear but something that will help you prevent an early death and will give you your life back!
For what it's worth, it took me a couple of months to find the right mask, right HH settings, get a hose cover, figure out the right hose management technique, get a data capable machine, etc... but in the meantime I will still getting better quality sleep than ever before. Thanks to the wonderful folks on this forum, I was able to be agressive and SOLVE my problems rather than sit around wondering why everything wasn't working, so at least you're here, so ask ask and ask until you get it all figured out!

I know this is an awful lot to ask... I'm very eager for this treatment to be successful. The surgery is not really an option for me (unsuccessful for my mom and my brother who happens to be an ENT doctor!). I'm sleeping so much better than I used to sleep, but I know it can still be significantly better.

You have taken a great step by posting here, none of us are here on this forum because we're forced to be, but because we want to help. So don't stop asking until it's successful!!!!!!

Thank you all so much for the way you support one another and for the information you provide. I can't wait to be able to give back the way you all do, once I get this thing figured out for myself!

Your questions are already helping the other lurkers reading this post

[wil]

Thanks so much all for your help...

are you aware that sleeping on your back is the worst position you can use as it encourages more apneas?

I know, but I'm comfortable that way! I never used to sleep on my back until I broke my arm and was forced to do so for six weeks. Now I like it occasionally...

I don't think your machine is 'data capable', allowing you to track your own progress daily on your computer as maybe the majority of people here do, and getting one would help you to really understand what's happening when on many levels.

I did a little more research and double checked my machine. They can be difficult to identify until you know what you're looking for! I have updated my profile with the correct equipment and it is data capable. I'm ordering the software for it today, but I'm still researching exactly what I need. There seems to be some confusion over which card readers will work. I have one I'm going to try to see if I can see the database and go from there. Great advice! Thank you Julie! Actually, I've been pretty impressed with my DME so far. My RT told me he was a moderator on this site, so I think I'm in good shape there!

It looks to me like you need and were doing OK with the FF except for the sore nose bridge.

I was sleeping much better and seeing great results with the FF, but my RT didn't fit me with it (someone else in the office did, because the RT was out that day and I was VERY EAGER to get started, not their fault) and it was clearly not well designed for high pressures. The FullLife mask doesn't have a forehead brake on it, so all the upper pressure is put on the bridge. With high pressure you really have to tighten it to the point that you're going to have problems. I tried bandaids (leaked around them), liquid bandage (stuck to the mask and ripped off any scabbing in the morning, making it worse), I tried other sizes (FullLife comes with all the padding sizes), and Padacheek doesn't make anything for it. I'm not against FF, but that one definitely isn't right for me (or anyone with a pressure over 10, in my opinion). The RT suggested I try the nasal, and that's where we are. I'd like to make the nasal work because it solves the dry mouth problem and it's not UNcomfortable. I just have to get the leaking under control, and I have to see the output from the software to figure out more about my situation to determine if I need to go back to FF. It's definitely a possibility, but I'm hoping not to have to do so.

An alternative to the Chin Strap is the PapCap. I've used it for several months now, and like it very much. It's cotton, and fits snuggly on your head, , and replaces the neoprene straps around your head. The chin strap attaches to the PapCap, and helps keep your mouth closed, as well as stabilizes your mask. I use it with a nasal mask, the Mirage Activa Lt, and Softgel (both cushions fit the same frame). My leak rate is zero.

Never heard of it. Ordered one today. Thanks!

You may need to investigate head pillows, so your mask is not dislodged by the pillow when you sleep on your side. I use a PapPillow, others like a buckwheat, or foam pillow with cut-outs for your mask. If you do a search on head pillows, you will find lots of ideas.

Ordered one of those too. Was hoping not to have to because I really like my pillow, but I think I'm going to have to give it up.

Your aching teeth could mean that your straps are too tight, and/or your bite is being mis-aligned.

Still don't know what's going on here. I've never been a grinder, ever. Don't understand why wearing it is fine, not wearing it makes my front four teeth (two front top and two front bottom) ache. Oh well, I guess the moral here is, Wear the thing! Hopefully PapCap will be more helpful in other ways!

The congestion seems to be getting better as pollen season draws to a close. I think that may be unrelated to but exacerbated by treatment. The pollen has been pretty atrocious here in central North Carolina over the last few weeks, and that may just be bad timing.

You're probably mouth breathing or mouth leaking with the nasal mask, so the APAP is pumping up the pressure to keep your airway open to compensate for the leaks. Remember the sleep study only measures that particular night's events.

I think you're right... I can't wait to get my hands on the software so that I can see for myself. I wish it were downloadable after purchase, instead of having to wait for it to be shipped...

Depends on the patient! Some are just really lucky and get everything right the first time, others have more difficulty finding the right mask or the right pressure. Your most important ally here is your ATTITUDE. If you start off defeated, you will never get it to work.

I'm definitely not giving up! Even if things don't get any better than they are now, it's a vast improvement over life before treatment. I just think I can do better, and I'm willing to work at it. I work at a transplant clinic and one of the very first things we teach our candidates is that they must be responsible for their own treatment. Of course, we're there every step of the way but if they're not willing to take care of themselves there is very little we can do to help. I'm taking that attitude forward in my own treatment. I have to be involved of treatment success will be impacted.

Oh, and to clarify, my brother WAS an ENT, he's now an anesthesiologist, and he is not responsible for my care. Unfortunately, he hasn't been able to be very helpful in my therapy! He wouldn't want me implying that he's a lousy ENT, especially when he's a very good anesthesiologist!

Thank you all so much for your help! I'm able to address every issue I was having as a direct result of your responses. If I have to buy a new interface out-of-pocket, I guess that's what I'll have to do. I'm already spending a lot of money today (software, pillow, papcap, a hose hanger, etc), so what's another $120 or so? I'd rather have it to spend on other things, but the kids won't go hungry and this is important.

Thanks again all! It's good to know restful sleep is attainable!

[DoriC]

The QuattroFF and Ultra Mirage FF are very popular masks and can be adjusted for higher pressures in most cases. Although not lately, my husband has slept with his UM with no leaks at 13cms.

[wil]

Thank you! I will keep that in mind. Like I said, I'd like to make the nasal mask I have work, but I'm not sure if I'm going to be able to do so.

I tried Lansolin last night for the first time and it helped some. I've also ordered the papcap and a pap pillow, so maybe they will help also. Seems like I'm spending lots of money on things that insurance won't cover... That's money I'd much rather not spend, but I guess it's gotta be that way.

[dtsm]

I'll tackle a couple

1. The chinstrap seems like a stupid idea to me. Sure, my jaw is held closed (if I put it on tightly), but that does nothing to keep my lips securely closed at my high pressure level. It doesn't reduce mouth leaks when I use it but I have noticed that my teeth ache if I don't use it. Is that normal? Is there a better solution (and don't mention taping, I'll go back to not sleeping first)?

You're correct, the chinstrap most times doesn't really work effectively. Have you looked into the papcap plus suggested by katiew?
Why are you so against taping? Have you tried it? For many of us, it works great.

5. Against prescription, I have changed my software setting from CPAP, 15 cm to APAP 15-18 cm. I'm showing a 90% at around 17 cm. Is this dangerous, or is there any reason I shouldn't do this? Is it possible that 15 cm was sufficient for my full face mask, but not for my nasal mask? Do these have different prescriptions commonly? When they did my study, they ONLY used a full face mask.

It's hard to answer what is the 'right' pressure because you have leaks. Until you find the 'right mask' and get a flat leak line, your pressure might vary. It is not dangerous to keep on apap for the time being, while you fine-tune other variables. Make sure to try each thing out for at least a few days to week before switching gears. Otherwise, you'll never properly identify problems and solutions.

7. How long does it take for most patients to settle into their equipment and routine? I mean, to really iron out all the kinks and get the proper interface and get it working properly, figure out the leak situation, fight rainout (fortunately not a problem I have), that sort of thing? I use therapy every night religiously, but it still is a hassle. Usually when I'm awoken it's because of the equipment, not the symptoms it treats...

Different strokes for different folks. It took me about 1 month to get used to the smell, the noises, all the other weird things that go on. My brother took 5 days to adjust! Others take even longer....usually it's finding the mask. I tried total of 4 and still swap btw the last two. Other's are still searching...

Just remember, it's a marathon.....be patient and experiment with different things. Lots of good stuff and good people on this forum.

[jennmary]

The QuattroFF and Ultra Mirage FF are very popular masks and can be adjusted for higher pressures in most cases. Although not lately, my husband has slept with his UM with no leaks at 13cms.

I have used both of these masks...my pressure is set at 16, and I dont have leak issues.

It took me about a week to settle into CPAP. I didnt have any real issues starting out if I can remember correctly. But I went into it knowing CPAP was not an OPTION. It wasnt a choice I was making. It was something that had to be done, and I could either do it or I could complain about it and make it harder on myself...and still end up doing it. lol

I had to start with a full face mask. Then over a year or so I trained myself out of mouth breathing. Now I use a Swift LT with no problem. The full face mask still comes out when I am sick though. I make sure to keep my allergies under control with medication during allergy season...that way it doesnt get in the way of my CPAP therapy. I dont wait for the sneezing to start...I take allergy meds daily so I never have a problem.

You may need to spend a year or so with a full face mask. During that time you can concentrate on your pressure needs and just getting used to CPAP...and working on your mouth breathing. The upside is, that if you can sleep with a full face mask on then (in my experience) you can sleep with almost anything on. lol

[wil]

Everyone is giving me such great information I hardly know where to start. I'm sure that's a good problem to have!

I've ordered the software so I can better see what's happening, along with a new pillow and PapCap, and I've started experimenting with Lansolin. I have a lot to try over the next few weeks. I'm really hoping not to have to buy a new mask. My insurance will only pay for one every six months, and I've had mine for too long to return it under the fit warranty. Of course, I've spent way more on other things than I would have on a new interface in the last few days... We'll see how it goes!

Thanks again so much to everyone!

[DoriC]

I seem to remember your saying that you had your HH turned all the way up with the FF. Have you tried lowering it? Also I think you said your titration was 15cms. Have you tried the auto formula 2cms lower and 2cms higher?(13-17)? That's the recommendation we followed when we started here. Titration was 13cms so we set it to 11-15cms and worked from there with software. We settled on cpap at 12cms which controlled the runaway leak issues and HH in Passover and now after a year it seems that hubby sleeps very well on auto set at 10-13cms. He sleeps at the lower pressure and rarely goes to the max. I think the sleep study was not exactly accurate but it gave us a starting point. The software was essential for dialing in the correct pressures at any given time.

[wil]

The software is definitely going to be helpful... They can only gather so much information in a few hours at the study. My software is coming in this afternoon (it's on the UPS truck, out for delivery right now).

I have it set right now on 15-18, and the 90% pressure hangs around 16.8. I tried 12-17, but my AHI went up significantly and I wasn't feeling rested in the mornings. Without the software it's difficult to know why, but I'll have that option soon.

I'm running the HH at 2 or 3 right now, which definitely has been helping clear my sinuses (that and the pollen season coming to an end). I can not use my FF, as it causes the skin on the bridge of my nose to abscess. I may buy another FF, but the one I have is unacceptable. I've tried everything to be able to use it, but it just won't work at high pressures (on my face anyway). I can't experiment with FF until I get something different.

Software, pappillow, papcap, hose hanger all coming in today, so hopefully I can start to move in the right direction. Had a great night (apparently, because I've had a great morning!) last night. Used Lansolin and greatly improved the flapping mask problems I'd been having...