Newbie Intro

[RRL]

Hello all and thank you for your contributions to this forum. I've learned quite a bit by searching for topics, reading threads and informational stickies. I don't have a specific question right now - just wanted to introduce myself and describe (ramble about) my situation.

First diagnosed moderate OSA 2009---->PR Auto M-Series heated humidifier, PR Original Blue Gel Nasal Mask, PR Premium chin strap. Tried it for a few months and just couldn't get used to the therapy. Stopped CPAP and didn't start again until this year. January 2016: split-night sleep study = AHI 19.5...Supine AHI was 100 something...02 Sat to 73%...Non-supine AHI was practically non-existent at 0.5...so clearly this indicates positional sleep apnea. I did not have REM sleep during the diagnostic portion of the sleep study. The doctor said there could have been more events in non-supine if REM sleep had occurred. After they woke me and started CPAP, I had no apneas or hypopneas and did have REM sleep. Obtained copy of sleep study and prescription for Auto PAP 8 to 15cm H20.

This past Monday, I started PR System One Auto A-Flex heated humidifier. (It doesn't say "60 series" anywhere, but when I uploaded SD card data to Sleepyhead it shows up as a "60 series.") The manual says the machine has "System One resistance control" feature to adjust pressure based on mask type. DME said the machine doesn't have this function, which puzzles me. This forum's host site says this model has that feature. Oh well. I was having some expiratory discomfort so I figured that feature would help some. For now I'm experimenting with A-Flex and humidity. Level 3 A-Flex with level 2 humidity seems adequate for now.

Mask: I was given the PR Wisp Nasal mask and was fitted with a Large cushion. The measuring tool in the Wisp package says I'm "S/M", but the DME just gave me L and XL cushions and took away the S/M cushion. I've read on here about users' experiences with sizing issues with the Wisp. I do get the middle nose red spot. The Large does seem to fit properly, but it would have been nice to at least try the S/M just to compare. I found I needed to adjust the headgear to bring the bottom of the cushion below the nostril openings (which I've seen mentioned here) otherwise the cushion 'rides-up' the nose and partially blocks the lower nostril openings. I had to loosen the top two headgear straps quite a bit to allow the cushion to drop down enough to achieve a proper seal. I am attempting to get the large version of the Wisp headgear because the top straps are loosened to the very ends of the straps - with the large I would expect the top straps to fit better offering more overall headgear balance...hope to find out soon.

Chin strap: DME didn't have any...seriously? I mouth-breathe all night, every night (as far as I know) based on the hallmark symptoms. So, without a chin strap, I had to improvise. I cut out the elastic band on a pair of boxers and tied up my jaw. So I've been using that since Monday. It's been causing head pain and my mouth still ends up opening causing me to wake up with air rushing straight out of my mouth. My AHI, however, has been really good at a little over 1 on average. I'm still learning how to interpret the Sleepyhead data with regard to leakage, etc. So far, the most time I've been over the "leak redline" is 3.6%. Today----> obtained an actual chin strap (the generic PR Deluxe chin strap.) This is the type of strap they used on my at the sleep study. It would be nice to not have to use one, but I haven't been able to prevent the mouth-breathing on my own yet. So: tonight I will use a proper chin strap and see what happens.

Below are the past 3 nights data screenshots from Sleepyhead. For any of you who know much about interpretation of these, feel free to comment if it's of any interest to you. The pie charts are quite different on each day. I used different combinations of A-Flex and humidity for each day so there isn't much consistency in terms of variables. I'm basically trying things and gathering information at this point. Well I've rambled enough for now....thank you for reading my introduction and see you around the forum!

[palerider]

The manual says the machine has "System One resistance control" feature to adjust pressure based on mask type. DME said the machine doesn't have this function, which puzzles me. This forum's host site says this model has that feature.

DMEs are notoriously misinformed about the machines they sell.

[RRL]

Last night I used a real chin strap for the first time. Didn't sleep well and still feel tired after enough sleep time. The graph shows a lot more snore activity than I've seen previously. I do remember waking up once with mouth open slightly, so I tightened the strap. Any comments on what this graph indicates?

[otrpu]

RRL,
When I have trouble keeping seal with my normal FFM, I switch to my Hybrid FFM. Kit comes with all three sizes of cushions & nasal pillows. It has a much smaller mouth area to seal. Might be worth a look. Link is in my equip list below.
Cheers,
otrpu

[RRL]

Thank you for the suggestion, otrpu

[Mudrock63]

Over the course of the last four months (since I started therapy) I have made multiple setting changes in an attempt to maximize my therapy's efficacy. My suggestion is that you make any major changes one at a time, and give each major change at least a few days to average out a result. I don't consider a humidity setting change to be major, unless your setting made you so uncomfortable or dried out that it messed up your night's sleep. A mask change is something I would consider major, along with any pressure setting changes. The point is, every night can be different due to so many variables NOT related to treatment. Like, were you tired when you went to sleep, did you exercise that day, were you experiencing any pain that might have affected your sleep. Stuff like that. So I believe each major change needs a few days, or ideally a week's worth of data to evaluate and average out a result.

Your AHI looks reasonably low. Can you get it lower? Possibly. I have tried versions of all three types of masks, and have found that the FFM is the easiest to control leaks. That is just my experience. Your mileage may vary.

[Mudrock63]

The other point I wanted to make with you is that since you just started therapy again, keep in mind you probably have a large sleep debt to pay off. So you may get 10 hours of sleep with a good AHI and still experience some tiredness. Don't get discouraged. Your body has been subjected to years of interrupted sleep. It is not going to recover in a week. I believe it takes months of consistent therapy to get your sleep equilibrium back. JMO.

I will leave setting suggestions to the experts.

[OkyDoky]

I don't really see anything on your screenshot that screams for attention. Your leaks are minimal except for that one short peak that you corrected quickly. On the flow graph the little peaks are pressure probes where the machine's just checking to see if you need an adjustment. I'm not sure the VS2 graph has great significance at this time. If you want to try a small increase on your minimum I think I would only go up by 0.5 and see a few days results.

[RRL]

Thank you, Mudrock63, for sharing your experience and sensible comments and suggestions. It has helped encourage me and put things in perspective as I start this journey. I just started using the chin strap and will begin sealing my mouth with that 3M porous tape tonight. I'll take one day at a time keeping in mind what you said about the years of interrupted sleep and sleep debt.

Thank you, OkyDoky, for taking a look at my sleep data and sharing your interpretation and suggestion. The ramp starts at 5cmH2O and the therapy range set is 8 to 15cmH20. I have been starting at the 8 level of pressure because anything less feels like I'm not getting enough air. I have played around with the options and have been unable to find a way to adjust the therapy pressure, i.e. change it to start at 8.5 instead of 8. Maybe they have it locked? If you or anyone knows how adjust the therapy starting pressure on my machine please let me know.

The chin strap has definitely helped stabilize the leakage rate, but this snore business has definitely increased since starting the chin strap. I've done a little research on the topic, but haven't learned enough yet. As you say, the VS2 graph may not be of great significance right now anyway. Just to compare: on Wednesday, before the chin strap, the total snore value was 15 VS2; last night it was 57 total: 43 VS2 and 14 VS. Of note, I didn't have any "VS" values before the strap - just VS2s. As you mentioned, an increase on the minimum pressure may be worth a try. (If I am able to do it!) Below is last night's data:

Many thanks to you both!

[OkyDoky]

This link shows you how to get into the clinical settings. http://www.apneaboard.com/pr-system-one ... structions
You can get a copy of your machine's Clinical Manual here by scrolling to section three and following instructions for them to email you one. It has all the information on how your machine works and how to set your machine. http://www.apneaboard.com/adjust-cpap-p ... tup-manual
Your screenshot looks good. How are you feeling?

[palerider]

The ramp starts at 5cmH2O and the therapy range set is 8 to 15cmH20. I have been starting at the 8 level of pressure because anything less feels like I'm not getting enough air.

many people end up not needing/wanting to use the ramp after they've gotten used to using the machine... it's pretty common... ramp is often viewed as a 'starter feature'.

[RRL]

Thanks, palerider. Yeah, I find it's definitely not needed for me as the 8cmH2O is reasonably comfortable. Makes sense it would often be considered a starter feature.

Thanks for the info and links, OkyDoky! I'll see if I can get the therapy pressure starting out 0.5 higher. I'm not feeling much different than I did before starting CPAP last Monday, except for the sore red spot on the middle of my nose, ha. I think the cushion fits OK, maybe it's pushing against the frame in different sleep positions or something...maybe the red mark will stop happening after some getting used to the mask? I have very sensitive skin to begin with so I expected marks of some sort, just would rather not have them persist.

I know mask type/size/fit/comfort/seal etc. are all very important in terms of optimizing treatment for each unique individual, so trying other masks may be indicated at some point soon. I feel like my DME has a "set it and forget it" attitude toward equipping CPAP patients, so I expect that asking to try other masks will be considered an outrageous request. (I know DMEs can be hit/miss and can be notorious for poor service and/or knowledge of CPAP equipment/supplies - frustrating.) If after two weeks I am still getting the red mark, I'll call and see how they respond.

Since my AHI numbers are pretty good overall, I hope to feel some of the common improvements that come with successful therapy sooner or later. I suspect it will take some more time and tweaking. I'll find out tonight how the tape works out. Thanks for the help and support!

[OkyDoky]

except for the sore red spot on the middle of my nose,

Try Lansinoh on the sore spot during the day. It is for nursing mothers and found in the baby section. It will help until the soreness goes away.

[RRL]

except for the sore red spot on the middle of my nose,

Try Lansinoh on the sore spot during the day. It is for nursing mothers and found in the baby section. It will help until the soreness goes away.

Thanks for the recommendation!

[RRL]

The manual says the machine has "System One resistance control" feature to adjust pressure based on mask type. DME said the machine doesn't have this function, which puzzles me. This forum's host site says this model has that feature.

DMEs are notoriously misinformed about the machines they sell.

It turns out mine is either misinformed or lying. In my case, I felt like the RT knew it had the feature but was lying because he didn't want to deal with it. He said something like 'well there's differences in manuals....it doesn't have that.' Differences in manuals? My manual shows the exact make and model of my machine on the cover in picture and text. So he's saying, for example, manuals for two identical machines of the same make and model will vary in what they say in them?...or....they have one machine described on the cover, but have a different machine's literature in the inside?...printing errors? This is just nonsense. Seems like he just wants me to trust him and forget about it, but gave no logical answer to my question. He seems be taking the "I'm the expert, you're the idiot patient" stance.

Before I got involved with them, I called to ask if they provided PR System One 60 series machines and he answered the phone. He said something like, 'of course we do - that is the primary model we use.' This tells me that he most likely does know about this machine which would also mean he knows what options are available in the Provider Mode which he must see and use every single day to enter patients' Rx'd pressure ranges, etc. I believe this DME supplier's RT is blatantly lying to me.

Thanks to OkyDoky's reply with info on how to adjust my machine's settings, I was able to go into Provider Mode. One of the first things I saw listed was "System One resistance" with the option to toggle it ON to X1, X2, X3, or X4. My mask has X1 printed on it so I turned the feature ON to X1. Then the data card took a long time to do whatever it did, then I left Provider Mode and back in Patient Mode System One resistance is now listed with the X1 setting. Time will tell if this will even make any difference in my treatment, but I am glad I am able to at least try this feature now. My assessment currently = He knew my machine had this feature. He lied to me.

This alone makes me want to return everything to the DME supplier and go back to the sleep clinic's home health division, which I should have used initially. I am planning to call my insurance and ask the hypothetical question "Can a new CPAP patient change to a different DME supplier after having only been with them for a week?" The main reason would be 1) this apparent lie because it deprived me of the ability to utilize an available comfort feature that could have been very helpful as I started therapy and may have improved the effectiveness - especially when I called to ask about the feature reporting my discomfort due to too much expiratory resistance.

As long as I'm ranting, I might as well mention a few other details that support my desire to leave:

2) There was a "mystery chunk" of something stuck on top of the main dial. A freakin' chunk! Of what?....food?....snot?....worse? Whatever it was, I had to scrape it off and scrub the area quite a bit to get it off. I should have asked, "What is that on the dial there?" Instead, I just let it go and let the RT do his thing figuring it was maybe a little glue chunk that perhaps held the manual or another item over the top of the machine when it was in the original package since I(naively) thought it was a new machine and I've seen those little glue chunks a few times in the past when opening new merchandise. This chunk was not glue. It was either food or snot or worse. This is lazy and aloof at best and unsanitary and unsafe at worst.

3) No choices of mask type or cushion size. Instead he simply gave me the mask I have now with Large cushion and made sure I could breathe through it with the air blowing while sitting up. No lying down to assess mask/cushion fit. Then he took away the S/M size cushion from the package and left me with the L and XL size only. The sizing strip that came with the mask packaging says I'm a S/M so I wanted to try that one, too; now I can't. No option to try a FFM or pillows to see which fit best or was more comfortable.

4) No assessment of proper headgear fit, just 'you can adjust these straps.' (The Large headgear would actually fit better because the Original straps on the top reach all the way to the ends so the Velcro barely holds on to the fabric.) I wasn't informed they make a Large size headgear - I found that out online. It's for people with "neck size 17 / hat size 7.25 or larger" and that's me. I called their central supply office and they have it available to ship to me, but the DME supplier office "doesn't carry it" so they can't send it to me unless I have the RT do another "mask fitting." How would they see if the Large HG fits better if they don't have one? I declined an appointment because I figured the RT would look and say, 'Well, it doesn't fall off and it isn't too tight, so it's not a problem.' The straps will not completely attach to the fabric - only half or less of the available Velcro on the tabs attach - to me that means it doesn't fit cause the straps are too short.

5) No chin strap available. With my new nasal mask in hand, I explained that I breathe through my mouth at night and needed a chin strap during the sleep study and when I tried CPAP in 2009. He looked and said they had no chin straps. He gave me a card with a reference/item number for the chin strap he recommended that could be shipped by the main supply center. When I called the supply center they said they don't carry that chin strap. I had to use the elastic from my underpants to tie my jaw closed until the "comparable" chin strap arrived.

6) RT repeatedly snorted mucus or something to the back of his throat making a disgusting sound which was repulsive and unprofessional. It also brought back the concern about sanitation and hygiene.

7) RT had me sign and initial about 7 pages and only told me what one of them meant.

That's the end of my rant. I know DMEs can be great or suck and that my less than positive experience is nothing new in this realm, but I feel like it's not unreasonable to consider a change. Thanks for listening if you made it this far. I plan to have this post visible if I end up asking to change to a different DME supplier so I remember all the reasons. I'd have to start from scratch and stop therapy for a few weeks, but I think it might be worth it and my insurance does cover the sleep clinic's DME supplier I mentioned. I plan to call my insurance.

Has anyone using health insurance changed their DME supplier shortly after starting with one, like returning the machine, etc. and going elsewhere? I'm guessing if a person owned their machine and changed DMEs it wouldn't be a big deal for insurance. Since I'm in the rental phase, I know that's a complication I'll have to ask them about. I know it varies how people deal with this CPAP stuff, but any insight or experiences would be appreciated. I just feel like I'd rather not be stuck with this kind of stuff for years if there is a way out.