New to CPAP

[RestlessinWoolley]

Hello group hoping someone can shed some light on some issues I have been having..

Machine: Dream Machine Auto CPAP
Prescription: 6cm/H2o
Mask: Simplus Medium
Hose: 15mm with Snugglewrap
Humidifier: 3 or 4
60 day AHI: 8.3

Okay so I have very bad Central Apnea due to too many years of pain meds to help with a chronic illness I have, pain, and tumors thru my body. I have had serious insomnia for years, and its been getting worse. Last summer I got on board with the Harborview Sleep Center, in Sattle, Wa and did a 2 night study. First night went so bad they didn't even get me on a machine because my numbers were crazy, so a few weeks later I came back for a full night with a Eson 2 Nasal Mask. I am a total mouth breather. Just before Christmas I started on my machine after fighting medicare, and a few other things. I started with a Wisp mask but that was shor lived due to getting huge sores on the bridge of my nose and my upper lip, so I had to get a different full face mask the SimPlus. I started with a Large and it was annoying, id rollover and get woken up with a squeal of air, or having it spray me in the eye, or it would shift and poke me in the eye. I also had issues if flood back which was solved by the Snugglewrap, as medicare wouldn't pay for a heated hose. At my month end replen for new filter and mask part, I requested a medium and it seems to fit better. as you can see my AHI varies between 6 and 14 depending on my pain and comfort level. but tonight I popped the card in and opened sleepyhead and was blown away that it shows my Vibratory Snore has been crazy. even times I was away is marked like crazy for VS.. I snore a little but not this much especially when I am awake. I wear the mask 8-10 maybe more hours a nicght, I am 100% in compliance. and here is the kicker, the VS issue didnt show up till i got the smaller face part. I absolutely hate the Simplus mask, i have a narrow nose bridge so it barely seals my nose before hitting my forehead, and still get leaks unless i wake up and adjust it every time i move. my DME could care less as I already had my one and only swap during the first 6 months, I will be able to get a new mask in 5 months now.. but why did my VS score go nuts with my new mouth part. I am so tired of being tired, its crazy. the first few weeks showed promise, I was waking up at the time I woke up for work with no problem. Ive been on disability 5 years now and its near impossible to get up before 9-10 am, so waking up at 6 am like nothing was like, I will love this!! but after 3 weeks my numbers climbed, my insomnia got even worse and now im so fatigued its crazy. I have my 60 day follow up monday, so I am hoping to get some info here to ask my doc.

Another few questions, I have the humidifier set on adaptive, and a 3 or a 4 and some nights its almost like the humidifier dosent even work, and uses little water and some nights it runs dry. I have a humidity gauge in my room and it seems to stay at 35-45 all the time. Does it go by room humidity or senses you need more moisture in your breath?

I also went into the hidden doctors menu and activated a few patient mode things like seeing the AHI on the machine, turned on auto start, and a few other things. Dream Mapper App says one number, machine says another and Sleepy Head says a third number.. Its almost like the timing is off on them and the App anyway is usually 1-2 points higher, like todays was an 11 according to the app and an 8.2 on SH and on the machine it says 7.9...

Lastly, I toss and turn badly in my bed, and i have wrapped myself up a few times in my hose, I try and keep it behind my head so I can roll back and forth, what are some good ways to keep the hose from wrapping around my neck? Dying from Central apnea is scary enough, but chocking myself to death is another..LOL


I have not tried a mouth strap yet as well..

Appreciate any info I can get, looks like a great group, and I am running scared right now, and even my Sleep Doctor is super concerned. sadly my DME only gives her limited data when she needs it so Moday will be her first look at what I can see off the Sleepy Head Program..


On a good note, I was selected by Philips to test their new F20 Mask starting next month, I checked the box on the regestration and figured id never hear from them and within days I had a call asking if I wanted to participate as they wanted people that used the SImplus or another full mask.


here is a pic of my previous night and showing in red all the Vibratory Snore events..I was awake till at least 3 am




Thanks RestlessinWoolley

[Julie]

While others will comment better re some of your SH results (and it is the best one to go with), a couple of things occurred to me -

Look up 'Hose Buddy' - it'll help keep the hose away from you and being tangled.

The 'hidden doctors' menu' is called the clinician's menu and good for you for finding it - we all use those to set up and tweak things routinely (it's quite possible you'll end up raising your low pressure setting to address the snoring).

If you sleep on your back it's likely responsible for a lot of snoring, the rate of hypopneas and/or full obstructive events, and if possible it could be helpful to sleep on your sides (many use backpacks while getting used to not flipping overnight).

There are a whole lot of masks out there - see Cpap.com for variety and pricing - so don't feel stuck with Simpus.

A bit surprised you're having trouble with humidity on high settings considering you're in WA vs Arizona, but again others might have more suggestions.

[Guest]

I'm a side sleeper all the way it's impossible for me to sleep on my back as I have tens of thousands of small tumors all along my spine. And the big thing is I rarely snore. That's what's throwing me. All them snore events and it's only shown up since I've gotten the smaller face pillow and changed filters. The sent me generic filters. And the bad part is I'm on Medicare and now stuck with my DME for the next few years. I gets auto replenish on filters and pillows monthly, new Jose and frame every 3 months and an entire new mask in six. If I want a new or different mask of have to pay out of pocket and I'd be in breach of my contract with my DME. Medicare makes me stay in compliance for the first six months if info out of compliance too long slot not see my sleep doctors within a set period I lose my machine as it's only being rented for the first six months. Kinda stupid and I hope my doctor caneam on my DME to spend more time fitting me to a mask that's comfortable. But like I said this huge increase of Vs events it started with the smaller mask and new filters. I can pull the filter out and hear the machine pick up speed. The Philips ones were really thin and soft where as these sunshine ones are thicker and totally more restrictive. I'll look at the hose buddy see the cost and see if maybe I can build something cheaper. Thanks

[RestlessinWoolley]

Don't know why it labeled it as Guest, but that reply was me above.

[Okie bipap]

If you got your machine through medicare, you have a 13 month rental, then the machine is yours. You are restricted in which DME providers you can use, but you can change providers as long as they are a Medicare approved supplier. Your DME supplier cannot legally send you automatic refills of your supplies. They can only send the supplies you request. Medicare has a schedule of how often you can receive replacement supplies, but that does mean you must get them at that frequency. You are not required to get supplies as often as the schedule says you can. You cannot get Medicare supplied equipment more often than indicated on the schedule.

[Pugsy]

Another few questions, I have the humidifier set on adaptive, and a 3 or a 4 and some nights its almost like the humidifier dosent even work, and uses little water and some nights it runs dry. I have a humidity gauge in my room and it seems to stay at 35-45 all the time. Does it go by room humidity or senses you need more moisture in your breath?

Goes by room humidity.
Large leaks and higher pressures will also affect water consumption but your pressure isn't high and at least on this report there was only a tiny bit of large leak flagged so I doubt leaks were an issue.
Since you do have some nights where you use almost all the water we know it is working. I suspect the nights where it doesn't use much water (if any) are nights where the ambient room humidity is a bit higher than usual....like maybe raining outside.
I wouldn't worry about water consumption unless your nose is unhappy or your often find yourself running the tank dry during the night.

Are you using a heated hose? If not, perhaps consider adding a heated hose for more consistent humidity control might help if your nose is unhappy or you are finding the tank goes dry during the night.

For the issues with hose read up on hose management. You can make your own easily enough or buy store bought.
viewtopic.php?t=10640

Since you report you never had the snore issues show up until this recent mask change and you were awake for a long period of time where the snores were flagged and you thus know you weren't snoring like that....I am betting the snores aren't real and most likely are related to something vibrating on the mask and the machine is thinking the vibrations are coming from in your mouth/throat.

The differences you are seeing in the AHI results between the various reporting venues is most likely either a rounding up or down issue or it has something to do with when the data gets transmitted and/or changed or is related to a reporting session.
The data on the machine's LCD screen will be affected by when it gets updated and if there is more than one sleep session involved and how long that session is.

We don't need the snore graphs or the respiration graphs and since you are using a pressure fixed at 6 cm we don't really need it because it isn't going to vary when fixed anyway. On your next image hide the calendar and redo the graphs so the other graphs are more easily seen and aren't so tiny.
Especially the events graph and the leak graph (which is so tiny we can't even see it). Don't include the snore graph (we can see the snores on the events graph) and the respiration graph isn't particularly useful anyway.

When in fixed cpap mode the FL (Flow limitation) flagging is turned off...so the absence of any FLs on your events graphs doesn't really mean much.
You might have had a truckload of FLs or you might have not had any.
FL flagging is only available in Auto mode. If you want to use 6 cm fixed but have FL flagging turned on you can do that simply by switching to auto mode and setting the minimum and maximum both to 6 cm.

Do you think you were asleep when the clusters of OAs and hyponeas were flagged?
If you were for sure asleep the clustering loosely corresponds with the time where a person might be in REM stage sleep and it's possible that you need more pressure during that time frame to better prevent the OAs and hyponeas. It's common for our OSA to be worse in REM sleep and also common to maybe need more pressure during REM sleep.

The Clear Airway/Central events...we can't do much about them with your machine except watch them. More pressure isn't going to likely help the centrals unless they are more related to arousals from the hyponeas and if more pressure reduced the hyponeas the centrals might be reduced but we don't know for sure that those centrals are related to arousals or not.

[palerider]

Don't know why it labeled it as Guest, but that reply was me above.

because you didn't log in before posting.

[RestlessinWoolley]

Thanks for the info. I'm again looking at my graphs from last night and have a multitude of snore events which again I knew I was away for the most part. But I was fighting my mask half the night as well. I finally woke up cleaned my mask again, shaved, and tried again but I'm fuessingike you said it's something vibrating on the mask as I was fighting tiny squeal leaks around the bridge of my nose. At least when my doctor looks at it she will know it's abnormal and it's equipment.

I should of said for my replenishmet supplies my DME will call me for my monthly allowed refill parts. I was told by them that during the initial rental stage I had to deal with them for my refill supplies but I cannot find any paperwork i signed saying I had to. I've got only a fee local suppliers anyway. I just was upset on how they handeled my mask. I was expecting to try a few different ones but during my initial setup she hands me a wisp mask in L since I had used the Eson 2 in Small during my test which I liked and said everyone I've got for an Eson in a small is a large with this brand. I wasn't even able to try it on the machine in office till I got home. It restricted my breathing as the seal flap blocked my nostrils. And at that point they were closed for the Christmas holiday. I had to call and make an appt to come back in and try a different mask and oh the it ones we have in stock are the Phillips DeamWear mask and the Simplus the Dreamwear mask fit horribly and in office the Simplistic fit okay. I then had to sign a long form saying this was the only mask swap that I could do in the next six months if I wanted Medicare to cover it and the recommended replacement parts. Hopefully in a few months when I can get a new mask I can deal with them or someone else and get a mask that fits better. With my condition my body can swell up and retain water as well so one night I get the frame and mask adjusted perfect doesn't mean the next night it will fit as well. I am.still learning this Medicare routine as well.

I have made a few changes in the clinicians menu but didn't want to make any changes to what mode or whatnot untill I see my doctor. As my DME said technically any monkeying around with the machine outside of patient mode could put me in violation with my contract so I limited my adjusting to add the mask fit screen and the Ahi screen and turning auto on to on. When I asked how to get in there the lady I dealt with was it wasn't for me to know because im not supposed to be in there. I'll check with my doctor Monday to see if a few other things could be changed as I was sure at my last appt with her she said 6cm on Flex. Flex is shut off.

No heater hose, I asked when I picked up my machine and was told no that I was unable to get one as Medicare did not cover it.


If I post another graph I'll do what is requested. I was having a difficult time making it clear trying to screenshot on my tablet and convert it in a format Photobucket could read.

Again many thanks I'm just tired of being tired all the time and feeling like I have to sleep all day long. I can hardly go out and Dona few errands right now without collapsing when I get home. Really hoping I see some results soon.

[Okie bipap]

If you want to try making your own mask liner out of an old well-used tee shirt, here is a link to the pattern I used when I made mine:
http://montfordhouse.com/cpap/diy-cotton-mask-liner.pdf
If you don't have an old tee shirt you want to cut up, I have also made some out of paint rags I purchased at a hardware store. They look like cut up tee shirts.

[OkyDoky]

No heater hose, I asked when I picked up my machine and was told no that I was unable to get one as Medicare did not cover it.

I don't think this is true. They are listed on medicare replacement schedules as Tubing w/ integ. heating element – 1 per 3 months. Maybe others will comment on this. I would call other medicare approved suppliers and ask them. Then if that is correct, confront your supplier to see if they will supply.

[Okie bipap]

I am on medicare and my machine was issued with a heated hose. I even got a spare hose of the same type through medicare.

[RestlessinWoolley]

I called my DME and got nowhere so i called their regional office in Seattle. BTW this is Lincare. Talk about opening a can of worms. My prescription was actually for a Bipap machine, humidifier and heated hose. So when I am in Seattle Monday for my follow-up I am supposed to stop by their Seattle office to get a new and proper machine. The lady about freaked on the phone saying I have central apnea and frequent events of irratic breathing. And it showed on the report, apparently back when I got my machine at my local office the galnthat did the CPAP setup walked off the job leaving it to a inexperienced person. I opened a can of worms now. But the funny part is I was supposed to be sent home with a fit kit a nose mask and a full face in a few sizes and was supposed to be given a week to make my decision, not just handed a mask and deal with it. I now also have the opportunity to drop them and use Norco or Seattle Oxygen Supply or anyone I choose if I want if the Seattle office can't fix it. Not only that is since I've been in full compliance I've never gotten a call other than for resupply. The person in Seattle did a download while I was on the phone and was not happy with what she saw as well and has forwarded some info to my sleep doctor.

Let the fun begin.


I was curious because during my test night I had an event of low breathing and I was awakened by the machine almost breathing for me, higher pressure and relief as well. And was told thats what I should experience I guess. Not only that is they also said my worst problem is between 4 and 6 am and someone should of contacted me sooner knowing something g wasn't right. Also the fact with my AHI above 7 constantly unless I it get a few hours sleep should of been throwing red flags.

Anyway after my appt Monday and I go see the CPAP specialist. I will be fitted correctly for a mask and a chin strap. Saying like above if the mask does not fit properly and minute vibration of a seal like a tiny leak can trigger the VS flag and info have tiny leaks all the time with either the med or large mask they were not as bad on the large.

So I guess we will figure this out Monday.

[palerider]

machine almost breathing for me, higher pressure and relief as well.

the machine you have in your profile does not breath for you, no way, no how, not at all.

[RestlessinWoolley]

okay here is try 2 on the graph, hope you can see it better, I just included the basics.. the AHI is similar all the time with a huge spike usually about 4-5am when I fall asleep before 1 am, lately I have been awake and disconnecting, walking around, going outside, trying to get sleepy, and falling asleep, last night was 4-430 why my spike didn't come till 8-9am..




Would a more restrictive filter cause any issues? these new aftermarket filters they sent are really thick compared to the oem Philips that are really thin cloth, the aftermarket ones are like the pollen filter almost..I have ran the diagnostic and it passes, just dont know how to read the codes it spits out. and one thing I forgot to mention is I have mask set on X1.. where the Wisp was.. but it seemed to be okay with the large mask, the only issue with the medium is the lower seal i must of bitten the other night as there is a small tear along the edge.. i am trimming it off tonight. but this whole problem is probably stemming from me being given the incorrect machine and not set up..

[RestlessinWoolley]

machine almost breathing for me, higher pressure and relief as well.

the machine you have in your profile does not breath for you, no way, no how, not at all.

Sorry, the machine they had me on during the test, i was awoken by a large increase in pressure and a relief, it was enough to fill my lungs to capacity and release. it was difficult at first almost fought it but as soon as i relaxed and let it do its thing i drifted off to a deep sleep. I believe it was the RemStar Series one I had during the overnight test at the hospital clinic.. my machine I have now doesn't do that at all. but I do experience a few times of me gasping for air, like i did before being on the machine.


Also I get the product trial mask from Philips in March, the F20 with some modifications they made. If that mask works better I know what ill be in line for in my 6 moth rollover for a new mask. biggest issue so far is if i yawn while the mask is on my jaw drops blow the seal and i have to hold the mask and reseal. the large was worse.. I am getting the mouth strap Monday to help prevent this.. and i will try the DIY seal out of an old shirt, plenty of them around..

I should also note, I went back thru the last 3 weeks on Sleepy Head,and the VS2 has been progressively getting worse, it just climaxed with the smaller mask, and I should say i have a severe deviated septum in my right nostril, almost 60% blockage. And occasionally my nose whistles when i inhale if i am slightly plugged up. maybe that can be whats triggering it. Ill take one of my more powerful nasal decongestants tonight and experiment. And yes, a rhinoplasty is possibly in order this spring, if the sleep doctor thinks it will help my breathing. Also i used to suffer from chronic right inner ear infections as well for the last 12 years, about a week ago i had an unusual nasty smelly discharge come out my ear.. but no infection this year..