New to CPAP

[Okie bipap]

First of all, DO NOT put essential oil on the liners. If you want to use essential oil, put a drop or two on a cotton ball and place it on a small dish near the air intake for your machine. I have never hemmed my liners. My wife crocheted a small bag with a draw string on it. We place the liners in the bag and toss it in with the whites when we do laundry. After they are washed, we iron them dry and place them back in my cpap night stand for use again.

[RestlessinWoolley]

Thanks for the tip on the oils. A good friend is selling them and wants to get me on board and I've been trying to figure how to use them with CPAP. I did read not to put it in the humidifier tank. But thanks for the warning not to put it on the liner. I'll.try the cotton ball method and rig a way it can be near the inlet. Maybe once I get a new pollen filter I'll fab a way for it to hold something outside the machine. I've been wanting to try, before CPAP of put it on my neck or in a diffuser around my neck but I'd get tangled in it, much like I did with my dog tags. Lol.

Well here goes nothing see if I can sleep tonight. I need to learn how to read sleepyhead on how much sleep I'm actually getting. My Ahi was the lowest ever last night a 3.6 but I know I took the mask off at about 6 am and slept till nearly noon. I'm.sontited of being tired it's silly. Off to see the sleep doc tomorrow to see how I can get the correct machine asap or get this one set up better.

I did find my paperwork form the results and all it said was 6cm starting pressure and a really high level of centrals. I will get a full copy of my study tomorrow, as it usually gets posted to my Echart with the hospital but this wasn't for some.reason.

Thanks again

[RestlessinWoolley]

Well things were interesting to say the least, Doctor is concerned that my CPAP is actually getting worse since the studies, even with the huge cutback on medications. I have been upgraded to COMPLEX APNEA. she was happy I was taking concern on my own, using sleepyhead to view my nights on my own to help myslef figure whats going on. She automatically figured the snores were equipment related as she has had nothing but issues with the mask I have. Also not happy with Lincare, that she explicitly put in my file Heated Hose, Humidifier, Chin Strap, and Proper fitting so I didnt need to make a fitting appt. As far as the machine that was her fault, at the last minute she decided it may be best to start me on standard fixed CPAP to see if it would at least cure my Hypopneas and some of the Obstructed. She did have in her notes that since a BILevel can be used in normal mode she preferred me to have a BiLevel Machine. SO a bit of crossed wires there. And she reassured me like you guys and gals, that as long as I dont change my pressure setting, or the mode, I can change the screens and add to my hearts content and change my ramp time if I want to. SO the next step now is next month I will have to go back in for an extended ASV test. A late sleep test as well, as she agreed my key issue time of problem had been between 4-6 am when I can fall asleep normally around 1 am. I dont see it on sleepyhead, but on her program she figured I have had less than 40 hours of deep sleep since starting on Dec 21st... Shes saying no wonder you are tired, many nights I never made it past REM.. and many nights Dream Sleep woke me. Sadly she wanted to give me some sleep meds to knock me out to give me some actual sleep but with central she cannot.. If ASV works for me I will select a different DME to suoply at that point and return my machine to Lincare.

I did see there fitter as well today, and agreed the SimPlus is totally the wrong mask for me. Had me try on the new Air F20 that I will be product testing in a few weeks, and OMG wow, its amazing when you actually get fitted and shown how tight or loose a mask needs to be. Sadly he couldnt give me a mask, other than, put in a request for my Doctor to put in a request to a DME to see if I can get one sooner than 6 months. At my six month interval Ill change anyway as Lincare said we wont get it till its been on the market for a long time..HA they have nothing but the cheaper masks in stock if that. My medium Simplus has a tear in the lower seal now since ive had to have it on so tight. the Clinic didnt have one to give me in their spares box, so I stopped along the way to Lincare and nope nothing in stock, she called her boss how to handle a defect, as I was told by the fitter it has a 90 day warranty, even that gals boss couldn't so she calls the supplier and we get stuck on hold for over an hour till I walk out of the office frustrated, oh and get this while I was there apparently opening my account up prompted I was nearly out of compliance for not having a 60 day followup, thank goodness i had my doctors notes with me..

Anyway, Lincare is about to get fired, my mask is taped up till I can get a replacement, and waiting on the ASV Titration study.. SO glad I have Medicare and a supplement.. I really don't want to see the crud hit the fan if they need to switch me to an ASV machine..I am really going to hate it if I have to stay with them as they are the only CPAP supplier in my area.. Already talked to another up north and they are so better mannered and better stocked. not having a part in stock due to failure is unacceptable.. but to keep me sitting there trying to get an answer from their supplier is crazy... My doctor knows of the issue and hears it from a ton of her patients enough she handed me a slip to report them. and said the clinic will no longer deal with then unless absolutely necessary..

Fun times ahead..

[Pugsy]

Tell me again why you just have to have a full face mask. I think I have some spare nasal masks in the donations box but I don't think I have a full face mask. I will go look in the box though just in case I might have a full face mask. I hate to see you continue to have to struggle with a torn/taped up mask that really isn't the right mask for you anyway. If I have something you could maybe use in the meantime...you can just have it.

It's good to hear that your doctor is going ahead with things for the ASV type of machine. I had a suspicion that you were most likely needing one but she is right...sometimes cpap can fix things well enough so worth trying and it also gives more leverage with the insurance company to justify ASV cost needs. You've already tried easy and cheap...and it doesn't work so move on to not so easy and not so cheap.

Is this the mask that you are slated to try?
https://www.cpap.com/productpage/resmed ... dgear.html
You mentioned this

I was selected by Philips to test their new F20 Mask

but Philips doesn't have the F20..Resmed does and it's in their AirFit line.
Resmed has already released the AirFit F20 so I am wondering what new mask you are set up to try that hasn't been released yet.

[RestlessinWoolley]

Thanks Pugsy. I was all mixed up. Phillips is actually conducting the test but it is a Resmed Product. Even the rep from Phillips was packing them. The F20 just launched a few weeks ago apparently. Magnetic catches on the sides, a far better swivel and connector. I just thought it was Philips because the stack of paperwork I did had Philips all over it. Maybe testing it so they can make a better product of Thier own. $100 paid for the base study if i comply with their needs and up to $200 if I get deleted for their long term test.

I went to the full face because I am a major mouth breather at night. The Rep gave me a chin strap but my head is big so it barely fit anyway and lasted 10 minutes before I tore it off because even with the fully face if I yawn or lie just right my mouth opens and the bottom seal is now in my mouth. I tried the Wisp but with Lincare laxkmof fitting it gave me a nasty sore on my nose and lips where it rubs, even thru my moustache.

I contacted this Cheryl Dotson at the DMEPOS competitive Bid Implementation place as instructed by my doctor to report Lincare and their lack of customer service and not having a simple part in stock .I missed her call at 8 am this morning she's on East coast I'm left coast. But she's calling back and supposed to help transfer me to a better DME.

Yeah my tape lasted till the humidifier life's it. For tonight I'm glad I'm keeping my spare old parts in a box I'll just have to live with the large pillow for now till replenish comes in 3 weeks or what this lady can do. I really appreciate you looking in the donations.

So if I understand Adv is Bipap? We discussed it my session overnight when it was turned it showed i reacted unfavorable to it but when I said well itnwoke me up and I couldn't figure out how to breathe but once the tech said to relax and not fight the machine my numbers dropped and I was asleep again within minutes. But she did agree and told me my 8-10 AHI isn't terrible it's the lack of change on the machine that concerns her and the extended late sleepers test to try and capture more of my deep sleep issue where my Ahi seems to peak between 50-60 AHI so they are allowing me to sleep till the clinic starts opening at 700 am. And she was happy I'd been using Sleepy Head to start taking notes when I see problems as well because I surprised her even when I asked about the huge spike at 4-5 am.

So today fire Lincare and try to see what we can do to get a new part coming. And yes F&P has 90 Day warranties on pillows, Frames and 30 Day on the straps.

Appreciate all the input Pugsy. I'm so tired of being tired it's not funny anymore. BTW how do I interpret SH to see where and how long I'm actually sleeping. Last night was the first night I can actually recall having a few nice dreams really weird but nice, but I also listened to Bi Neural Lucid Dreaming music an hour before dozing off. The nurse suggested it to me, I had checked it out before and went bah phooey but it does seem to relax me and let me sleep faster.

You input is always welcome. Thanks for everything so far, so much more to come.

[Pugsy]

ASV...Adapto Servo Ventilation is a type of bilevel machine...there are many types of bilevel machines and ASV is just one of them.
They breathe for you when you don't breathe on your own because of a central apnea and will still respond to obstructive apneas. They can fight 2 battles at the same time. Regular cpap machines can't do the breathing for you part of the battle.

BTW how do I interpret SH to see where and how long I'm actually sleeping.

SleepyHead doesn't know if you are asleep or not because the machine doesn't know if you are asleep or not. Remember SH can only report whatever data the machine gathers.
So we can't really tell for sure how long we sleep or what sleep stage except giving it a good WAG (wild ass guess) by evaluating the breath by breath flow rate.
With time and experience a person can get a good idea about asleep vs awake breathing but it takes some education. Even now unless the difference is markedly obvious I can't always tell.

Some examples and discussion about awake breathing vs asleep breathing can be found in this thread.
viewtopic.php?f=1&t=114600&p=1110933#p1110933

[RestlessinWoolley]

Finally last night grabbed a good PB!!! My Doc just called as well, they said the only to know or sure is to send me a different mask as its obvious with the Snore thing the mask is totally not right. They are working with a supplier to see if they can convince Medicare to issue me a different mask, and since I liked the F20 in clinic and even they doubt Lincare will ever get it as they like the cheap "garbage" that they will find a way. and the way may be to have one there for my ASV along with my heated hose, and I just get to take them home after the ASV test, so ill have it after the product trial return. They are now suggesting people use someone else as well as even the nurse is flabbergasted that even when she called my Lincare was blown off like i was and said, hes going to have to wait till his replen, sorry that's medicare. well no thats a defective part that has warranty. and they are clueless how to even do a warranty on a consumable part... My Nurse is contacting F&P as well see if I can be sent one for the time being.. So a few things going there..

I was reading up and it appears DreamMachine doesn't have an ASV yet, I could be wrong, saw an auto BiPap if that's the same. But got off the phone with the DMEPOS and im outside of a bid zone so after the next ASV test Ill switch to Norco and return the machine to Lincare is a change is needed, but even then I ll switch to them or someone online for my resupply..

last nights scan

[palerider]

it appears DreamMachine doesn't have an ASV yet, I could be wrong, saw an auto BiPap if that's the same.

they don't, you're not, and it isn't.

[RestlessinWoolley]

Thanks PaleRider, I was reading old posts and they were 4-6 moths old about it. I just have limited space and the dream machine is nice, I just dnt really like the humidifier tank setup that well. What are the more popular ASV machines? Form our chat today and my doctor further reviewing my results since now she has direct access to my downloads and not thru whoever lincare uses to monitor it for compliance, is she really thinks even if it takes time to adjust that the ASV is going to be the solution. I had nearly 7 minutes of periodic breathing last night nearly 2 minutes of near flat line breathing. Really scary kinda, really puts into perspective all the years of chronic opiate use for my pain. Being only 36 and knowing that ill be on a machine for the rest of my life, I really want to sort it out as well..

[Pugsy]

There's really only 2 manufacturers of the ASV type of machine...Respironics and ResMed.
Respironics as of yet hasn't released a DreamStation ASV machine. It is unknown if they even will. In the past they have been known to skip a whole model line when it comes to that model.
Respironics does have the PR System One model 960
https://www.respshop.com/bipap-vpap/sys ... p-651.html

ResMed does have the AirCurve 10 ASV which is the latest model and there is of course the prior model S9 Adapt.

Assuming your doctor opts for ASV instead of some other bilevel machine it will be one of the models above.

[RestlessinWoolley]

2 weeks old I can't believe it. I do have a support ticket open with F&P but it will be weeks before I'd see a replacement anyway.

[palerider]

are you a vigorous mask cleaner?

I haven't used a F&P mask, but I got about four years use out of a single resmed FFM cushion, I had a spare, (always have a spare of EVERYTHING) but never used it, because the first one never failed.

[RestlessinWoolley]

I clean it with dawn soap every few days depending on the drool factor. The other night I kept yawning and the seal kept popping in my mouth. I may have bitten it or something. I have my part from last month it's a Large and annoy's me worse than the medium but it will get me to the end of the month. The rep I saw yesterday fitted me with the F20 and unlike the seal on that better these Simplus cushions are paper thin at the edges and sharp. I wouldn't recommend the mask to anyone. It hardly snaps into the frame as well and half the time I hang it up in the morning the pillow just falls out of the frame as well. I'm trying again with a chin strap tonight obcustom modded it to be a bit longer. I've got a big head as well compounding the issues. It's going to be a leaning curve till I finally get settled.

[RestlessinWoolley]

Well, it was neither a Filter Or a Mask issue, I popped in the old filter from last month and switched back to my large mask and fought it all night as seen on how many sessions i had waking up.



I do have to say this was the second night I used BiNeural Beats Sleep Music for a half hour before I slept, and I went out like a light last night but woke up about 130 am and was wake for a while, till I D/C and got some water, bathroom and wandered a bit due to a nasty leg cramp. And back to the large mask and back to waking up feeling like a blimp and sounding like I ate beans all day yesterday..

Doctor did call and said I might be able to get squeezed in next Wednesday for the Extended ASV, if she can get another tech on the shift that night. they only do the extended tests on Wednesdays, but after reviewing the rest of my files agreed that my issue is stemming when I finally reach deep sleep, and my breathing goes haywire and I wake up again. But also thinks the Snore Trigger when awake could be my deviated septum with the percentage of blockage in my right nostril, so possible surgery as well this spring.. I don't even want to know whats involved in that..

[Okie bipap]

I used the simplus for many months and never had a problem with the mask tearing. I washed my mask every week to get the oil off of it, and used a home made mask liner during the summer months when the mask caused my skin to sweat under it.