Overwhelmed & frustrated

Hi everyone I'm John and new here….

I'm a bit overwhelmed and could use a shot in the arm from anyone out there who is in the mood to help. I'm sure many here have the same issues, and I've done some searching, looked at the videos, but am still a long ways away from getting myself on track:

1. I'm unable to make it past a couple of hours before I wake up gasping on my wet, moisture-filled, hot mask -- breathing my own exhalation, like the air has stalled out in my mask. When I use this equipment, I never get more than a few hours of sleep, but once or twice did have real dreams, which is rare for me.
2. It's encouraging, but finding any real support has been fruitless so far. Apria Healthcare is renting me the machine. The first two days I used it I had the above issues. I reached out and told them I was having those issues and they offered to replace the machine, but were otherwise unhelpful. I had to come to NNYC for two months and have been grappling with this device trying to force myself to use it, in spite of the pretty gross and horrible feeling I am experiencing with it. While I think it has more to do with settings, I don't understand what I am doing and no amount of video watching or blog reading has helped thus far....
3. My HMO (Kaiser) did a sleep study and yet no can tell me the exact outcome, except to say that I have severe Sleep Apnea and that they can provide a prescription to Apria or a web-reseller of machines. My primary physician is also an administrator there and is so busy he just emails me now and then to answer basic questions and to refill prescriptions. If I try to get too much in his face as my own advocate, he threatens to fire me as a patient. It's a vicious cycle there.
4. Because I am a bureaucracy of one publishing a 100-page golf magazine, producing a TV show, and running several websites solo, finding time to take care of health and do the reading/learning isn't fruitful. I spent today trying to get the info off of the card, but I have discovered, much to my chagrin, that of the only three options I can find provided by Respironics (SD card, modem, and web App via Bluetooth), none are available for my machine (e.g., there is no modem or Bluetooth connection on machine negating modem and web App options, and Respironics only offers its Sleepmapper software in Windows flavor, not Mac). I can't believe they even have a modem as an option in 2014, or no Mac compatibility in this day and age I'm sorry for the rant, but I feel like I can't even help myself!
5. I have read many threads here before today, as well. I know masks and machines are very personal, that I might be able to turn off the auto to stop the fluctuation in the air pressure settings, I can stop rainfall (I think that's the term) if I heat up room, insulate tube, etc. I am fine replacing my gear and buying better or trying others types. But Maui is far away and shipping costs (to and fro) make testing very costly. I wish I had gotten to this weeks ago while here in the city. Again, 12+ hrs a day x 7 at my machine and I don't seem to have the time to even write a post like this any sooner. I know it has to get better, right?
6. I hear these devices can really change your life. I am anxious for that to happen, and would love any links to any threads that might shed more light. I have, again, tried some searching and reading here but as with many forums sometimes knowing what to ask is the key, and I am a bit clueless at the moment.

Thanks for any and all input on perhaps how any of you have managed (on your own, with little support from the healthcare industry) to get through the learning curve. I am certain many here have achieved this thanks to this site and forum's members.

Welcome to the forum.

Can you please verify your machine model number? Your profile points to model 550 but you may have a model 560.
Model number will affect your options regarding humidity, rain out and general comfort.

Is there not a SD card in your machine? Or is the SD slot covered up with the modem?
If you don't have a SD card in the slot....you can use any SD card. Doesn't have to be Respironics brand.
Software is easy to obtain and use. Check out my signature link.

Oh...that SleepMapper online stuff...next to useless.

Mask issues....what pressure is being used? Are you using apap mode? Minimum and maximum pressure settings? Using the ramp? If so, how long.
Moistness in mask...what humidity selection? Is your bedroom on the cool side? Is the moistness just in the mask itself or is there some moisture in the hose as well?

Model number is a 3 digit number on the bottom of the blower unit. Probably will have DS or REF in front of it.

Don't know all the settings questions I asked?
Here's how to get to the clinical setup area to check on settings.
http://www.apneaboard.com/pr-system-one ... structions

Pugsy wrote:Welcome to the forum.

Thanks Pugsy!

Pugsy wrote:Can you please verify your machine model number?

Sorry about that. When I set up my profile I didn't see an option for a 560P, which is the closest thing to a model number I can fund under the machine. So, I do think it is a 560P.

Pugsy wrote:Model number will affect your options regarding humidity, rain out and general comfort.

I understand, and one post/thread talked about turning the settings to lower the humidity to C1 which I thought I did, and it helped a little, but it seems to be back at C5 now. I also turned the top humidity dial to 3, even though I am very dry in my throat, it still generates condensation.

Pugsy wrote:Is there not a SD card in your machine? Or is the SD slot covered up with the modem?

Per my OP there is no modem, no way to connect Bluetooth (that I can see) and there is a card, which I cannot seem to upload to the company's website as I am on a Mac and their uploader is Windows only.

Pugsy wrote:Software is easy to obtain and use. Check out my signature link. Oh...that SleepMapper online stuff...next to useless.

I will check out your sig. Yes, I am frustrated with the mfgr.'s software.

Pugsy wrote:Mask issues....what pressure is being used?

It says 13 in therapy window

Pugsy wrote:Are you using apap mode?

Is that A-Flex? If so, yes and it is set to 3, but I don't know what I am doing.

Pugsy wrote:Minimum and maximum pressure settings?

I don't see where that is.

Pugsy wrote:Using the ramp?

I see Ramp time: 20; Ramp Start 6. It seems like the machine stops working after a couple of hours (must be the auto settings) and that is why I am feeling like I am suffocating.

Pugsy wrote:Moistness in mask...what humidity selection?

System One Humidification is set to "off" (by me in an effort to stop the humidity) but Humidifier is set to C5, which is funny because as I said above I thought I reduced that to C3...

Pugsy wrote:Is your bedroom on the cool side?

At times. I run very hot, but usually my wife has it blasting hot.

Pugsy wrote:Is the moistness just in the mask itself or is there some moisture in the hose as well?

Some in tube but most in mask. The moisture is annoying, but the sense that I am suffocating on my own exhalation is what I think smothers me so much I wake up. It is pretty disconcerting and i usually tear off the mask in disgust/fear whatever.

Quick note olindacat -- I believe you can use Sleepyhead software with your machine, follow Pugsy's info on accessing the software. SleepyHead is the only software to date that runs on a Mac (unless you use Parallels, BootCamp, or some other software that allows you to set up a Windows environment on your Mac.) I'm happily using SH on my Mac running Snow Leopard.

And welcome -- gotta run for now, but welcome to the forum.

Hello John and welcome. Just want to encourage you that much of what you're dealing with sounds resolvable. Well, you probably can't do much to change unhelpful providers, but if they've given you quality equipment you've passed a major hurdle. Once you provide some of the info asked for on here, I'm sure you'll get some helpful pointers. While you're sorting through getting your treatment optimized and tweaking things (all while performing heavy work and personal responsibilities) it's probably best be very specific in your communications here and allow those who know this stuff like the back of their hand to help rather than you trying to digest tons of info to get to a few nuggets. There's so much info it is understandable to feel overwhelmed. I was so relieved when I found my way here and realized I didn't have to do this alone. When things settle down a bit, I do suggest you gets copies of your reports from your provider. Questions often arise, and having the info in front of you can save time rather than seeking answers piecemeal from the doctor. Good luck going forward.

EDIT: I see while I was typing you were already getting very detailed.

kaiasgram wrote:Quick note olindacat -- I believe you can use Sleepyhead software with your machine… And welcome -- gotta run for now, but welcome to the forum.

Hi Kaiasgram! Yes, I followed Pugsy's advice and link and found and already installed it. I just need to get the SD card reader running and try it out thanks for the help and welcome message!

kteague wrote:Hello John and welcome. Just want to encourage you that much of what you're dealing with sounds resolvable. Good luck going forward.

I appreciate your taking the time to help put me at ease kteague. I know it will all be fine, and with nice people like you here how can I go wrong? We all need help and I'm just glad this site is here. Thanks again. It's all good

AFlex is only available in APAP mode...so if you are using AFlex set to 3 then you are using APAP mode.

For the model 560 machine....you should choose
PR System One 60 series Auto CPAP
For the humidifier you should choose
PR System One 60 series Heated Tube humidifier with heated hose
even if you don't have the heated hose... heated hose has a black end where it connects to the humidifier.

Changing to Classic humidity mode (by turning off the new system one humidification mode) actually increases humidity that gets delivered. Classic mode uses heat all the time and will use more water and chances of rain out in the hose or mask is greatly increased. If you need the added humidity then adding a hose cozy to help insulate the hose might be sufficient.

Dry mouth...that can just simply be from mouth breathing as often the humidifier can't keep up with the drying effect of mouth breathing. It's a common complaint with full face mask users who mouth breath. The humidifier can't generate enough added moisture to hydrate the oral mucosa.

Since you have the 560 machine....I would get the heated hose as it allows more customization of the humidity that is delivered to give you the greatest chance of reducing the dry mouth with humidity selection and the heated hose pretty much eliminates rain out in the hose.
Rain out in the mask is also reduce but sometimes there is rain out just from moisture in our own exhaled breath if the bedroom is cool. I sometimes get that rain out even with my heated hose because my bedroom is quite cool.

Since you have a Mac
you will need SleepyHead with the Patch for the 60 series machine.
viewtopic/t88972/Pugsys-PointersSoftwar ... hints.html
viewtopic/t83551/SleepyHead-Series-60-Patch-Avail.html in this thread the Patch file for Macs is on page 3 of the thread...don't get the patch in the first post..that's for Windows

Alternately you could try the unstable Mac build as it already has the Patch included
http://sourceforge.net/projects/sleepyhead/files/ for unstable builds click on link to expand unstable build options to see them

Minimum and maximum pressure settings show in the clinical menu when Auto mode is selected...

olindacat wrote:I see Ramp time: 20; Ramp Start 6. It seems like the machine stops working after a couple of hours (must be the auto settings) and that is why I am feeling like I am suffocating.

Ramp at 20 means 20 minutes to get from starting pressure of 6 cm to whatever the minimum pressure is.
Not sure why the suffocating feeling after a couple of hours but since your pressure is at least 13 we can't blame it on the machine being set wide open with minimum of 4.
More likely after 2 hours you might be in REM stage sleep or maybe on your back and some apnea events have occurred which may have disturbed your sleep.....we really need to see the software reports to get an idea what might be going on...either rule in or out apnea events being the culprit.
viewtopic.php?f=1&t=81072&p=737779#p737779

John: This week marks the first anniversary of my intro to CPAP. I had a wonderful sleep study at the local krankenhaus but ran into a granite roadblock as I attempted to get accustomed to full-face masks on my own.

First, back away from trying to do all-nighters with your CPAP equipment. Use my four-step weekly plan WHICH WORKED WONDERFULLY for me:

1) During the first week sit, watch TV, or read with your equipment whirring away next to you. Get accustomed to the sounds, feelings of the moving air, and all the external trappings of the great chance at quality sleep you are nearing. Do NOT go to bed with the equipment.

2) Take the phone off the hook, draw the shades, evict everyone from the house, don't think about any nearby clock, and loosen your clothing as you lie on your bed in mid-afternoon. Turn on the CPAP gizmo, put the mask on your face, and close your eyes. Think peaceful thoughts, whatever they are to you. At some point in the week you WILL fall asleep. After you do, you'll be amazed at what a refreshing experience it was.

3) During the third week have all your CPAP gear ready for action as you go to bed for the night. As you've done so many times throughout the years, you'll awaken far before morning. When you do, slap the mask on your face and turn on the CPAP gear before your groggy brain has any idea what's going on.

4) After successfully completing the first three steps at your pace, decide on a night (mine was March 3rd) when you have full confidence and will retire for the night WITH your mask on. You'll succeed!

My biggest mistake was expecting everything to go perfectly from the first night. One must be patient and keep anxiety as far away as possible. Come March 3rd, I plan on some sort of goofy celebration to mark one year of refreshing sleep I never had - over four decades - before last year.

Best of luck and God bless.

olindacat wrote:

kaiasgram wrote:Quick note olindacat -- I believe you can use Sleepyhead software with your machine… And welcome -- gotta run for now, but welcome to the forum.

Hi Kaiasgram! Yes, I followed Pugsy's advice and link and found and already installed it. I just need to get the SD card reader running and try it out thanks for the help and welcome message!

John, no card slot built into your mac?

Pugsy wrote:AFlex is only available in APAP mode...so if you are using AFlex set to 3 then you are using APAP mode.

Is that good?

Pugsy wrote:For the model 560 machine....you should choose
PR System One 60 series Auto CPAP
For the humidifier you should choose
PR System One 60 series Heated Tube humidifier with heated hose
even if you don't have the heated hose... heated hose has a black end where it connects to the humidifier.

Done

Pugsy wrote:Changing to Classic humidity mode (by turning off the new system one humidification mode) actually increases humidity that gets delivered. Classic mode uses heat all the time and will use more water and chances of rain out in the hose or mask is greatly increased. If you need the added humidity then adding a hose cozy to help insulate the hose might be sufficient.

Par for me to do exactly the wrong thing. I don't like the heat at all. I wish I could do away with it as it makes me feel like I am breathing my own exhale. Should I shut off Classic mode then?

Pugsy wrote:Dry mouth...that can just simply be from mouth breathing as often the humidifier can't keep up with the drying effect of mouth breathing. It's a common complaint with full face mask users who mouth breath. The humidifier can't generate enough added moisture to hydrate the oral mucosa.

Oh, I see….

Pugsy wrote:Since you have the 560 machine....I would get the heated hose as it allows more customization of the humidity that is delivered to give you the greatest chance of reducing the dry mouth with humidity selection and the heated hose pretty much eliminates rain out in the hose.
Rain out in the mask is also reduce but sometimes there is rain out just from moisture in our own exhaled breath if the bedroom is cool. I sometimes get that rain out even with my heated hose because my bedroom is quite cool.

So I'm doing it all wrong ha! I hate warm BR when sleeping as I run hot to begin with. So, cold room isn't helping. Settings in Classic not helping. The kicker is having to buy (money not issue) heated hose! I am trying to breath cool air and a heated hose is recommended option, is that right? Or, if I stop using classic can I skip the heated hose?

Pugsy wrote:Since you have a Mac
you will need SleepyHead with the Patch for the 60 series machine.
viewtopic/t88972/Pugsys-PointersSoftwar ... hints.html
viewtopic/t83551/SleepyHead-Series-60-Patch-Avail.html in this thread the Patch file for Macs is on page 3 of the thread...don't get the patch in the first post..that's for Windows

Alternately you could try the unstable Mac build as it already has the Patch included
http://sourceforge.net/projects/sleepyhead/files/ for unstable builds click on link to expand unstable build options to see them

I installed the beta and it didn't 'see' the data. Then found the patch page but rushed and didn't notice your instruction to go to page three until I first did it wrong. What a dummy. Thanks for this Pugsy I am able to get data but, of course, it means little right now. I see you have a thread on how to interpret or use this software and I will be all over it thank you so much!

Pugsy wrote:Minimum and maximum pressure settings show in the clinical menu when Auto mode is selected…

Right. Where's the Clinical Menu? I see: Therapy/C-Flex/Info/Set-up and none of these show me two sets of hi/lo settings, or at least I am not understanding what I am looking at, which is most likely the issue.

Pugsy wrote:Ramp at 20 means 20 minutes to get from starting pressure of 6 cm to whatever the minimum pressure is.

So the air pressure drops from high-to-low?

Pugsy wrote:Not sure why the suffocating feeling after a couple of hours but since your pressure is at least 13 we can't blame it on the machine being set wide open with minimum of 4.

That sentence is going right over my head. I wake up because I can't breathe. There is no air in my mask. My wife says it is like the machine stops running. It feels like it is happening regularly but I can now see I have actually lasted up to 7+ hours on one occasion, so I made it through whatever it is that is giving me the suffocation sensation.

Pugsy wrote:More likely after 2 hours you might be in REM stage sleep or maybe on your back and some apnea events have occurred which may have disturbed your sleep.....we really need to see the software reports to get an idea what might be going on...either rule in or out apnea events being the culprit.

I have managed to generate some reports, thanks to you Pugsy. I have linked them in my dropbox if you or anyone cares to see.

This is SleepyHead's Summary Page: https://dl.dropboxusercontent.com/u/881 ... ummary.pdf

This is the series of graphs covering the date range from when I started using the machines until today: https://dl.dropboxusercontent.com/u/881 ... graphs.pdf

Thanks for all of your help Pugsy! You made my day, and night -- I hope soon….

DEXSUZ wrote:John: This week marks the first anniversary of my intro to CPAP.

That was a very kind, wonderful, heartfelt message and I wish I had read it two months ago. Had I your brains I might not be in the plight I'm in, but my start has been the extreme opposite and now the hope is maybe I can reach your place in the sun in time. God bless you for taking the time to share. I can't wait to be where you are one day DEXSUZ! Thanks again!!!

kaiasgram wrote:John, no card slot built into your mac?

Of course no! Steve Jobs is no longer there so Apple products don't work anymore

Olind...I'm so sorry you are feeling overwhelmed and frustrated. You've been getting great advice from the folks here and with your determination, you'll be all over this in no time.

I'm not a "newbie" but learned (or relearned) several things while reading your thread... so thank you... and welcome to CPAP world.