Non Vented Mask - Periodic Breathing Disorder - Anyone Else?

[Mac33]

Keith,
I fell asleep on my back on the couch, woke up with headache and heart pounding`damn sleep apnea, so I'm up now at 3:42am.
Anyway I saw your original post and you had surgery. Did the UPPP hurt and were there any complications? You AHI got better then it seemed to get worse with no real relief in tiredness. You also snore or now snored after the surgery? Anyway I have very severe palatal collapse and was contemplating surgery but ......doesn't seem effective it's a crap shoot.

[phorts]

Soooo, I got my ridiculously ridiculous ResMed Adapt SV today and a matching ResMed Quattro FF Mask (Non Vented). Here's the scoop leading up to tonight's first run.

First off, with regards to insurance, my Insurance has a $750/year DME cap so here's what the nice people over at North Atlantic Medical did to help me out.

1. Ordered a "Refurbished" ResMed Adapt SV (with low hours supposedly..havent checked)
2. Total cost to me is $3000 (with all startup stuff like Mask, tubing, adaptors, machine w/ Reslink, humidifier)
3. $750 will be billed immediately to providor leaving me w/ a $2250 balance
4. The $750 will cover the first 1.2 months of rental ($500 or so/month is what my health insurance allows or something)
5. After that, I will be responsible for the remaining balance, so they spread it out over the course of 18 months - or $125/month approx
6. Once the $750 kicks back in, they will use that to a. pay off the machine, b. pay off the balance of the machine or c. a little of both, whichever makes most sense.

This does 2 things.

1. If it works, i'll be happy to pay the $125/month for 10 months
2. if it doesnt, i'm still stuck with a shi&&y sleep apnea ordeal but atleast i dont have sleep apnea and a $6000 bill to boot, or have paid 2 months of rental fee (over $1000) to find out it does work..so that's good.


So I get to the DME provider and I go to their little fitting room and she shows me this mask, with about a foot (literally) of HARD adapters coming off the mask, THEN the tube. I was like..uhhh…wth is that!?

She explains, because of the Non-Vented Mask, they have to add these adapters, one is an anti-asphyxiation adapter (well that’s good), one is a whisper swivel for exhale, and the rest are connecting adapters for the mask and those two adapters… WHOA! Not happy.
So, in order to reduce the sheer awfulness of this situation, some brilliant person at ResMed decided to add a 4-5” piece of tubing in between the mask adapter, and the near 1’ of hard pastic adapters to reduce tension on the mask and make it so those adapters are “in-line” adapters…basically.
Only they didn’t have any of this 4” blue tubing..so I got to deal with having a baseball bat coming out of my face until they do (hopefully a couple days, and they cant just mail it to me, I have to schedule the tech to come out to put it on!!).

But, aside from that, I should be good.

Also, even though I knew the answer, I asked if she had the cable and software for the machine. You can guess what she said to that. So, I need to find out where to get that Jazz (the cable I can find, it’s the software I’ll need help w/)
No clinical menu for me, just her, so again, that I’ll need, as I’m an anal fiddler. Although, I guess this machine takes time to “adapt” to your breathing pattern so I’ll leave it as such for at least the first month and go from there.
Second, I really wish I just had a vented mask, as it would negate the whole purpose of the extra 1’ of hard adapters coming out of my face… but again, we’ll wait the month, try it as the doctor ordered and go from there.

I’m not psyched at ALL about the constant requirement of cleaning the mask, tubing and the daily ritual of dumping the humidifier out, airdrying and refilling at night, with distilled water no less. Does everyone REALLY do this? I feel like I’ll need a dishrack and hanger boards in my bathroom for all this gear. Geesh! But I digress, if it helps me…it’s worth it.
One last thing, as I was leaving I saw this dummy head with a clear plastic gel like thing on it’s nose, presumeably to protect it’s nose and create a better seal for FF Mask users. It’s called the Sleep Comfort Care Pad. http://www.sleepcomfortcaresystem.com/

Looked pretty useful.

So, off to see the wizard I suppose. Wish me luck, and if anyone has any info on that cable/software I’d be very grateful!

[JohnBFisher]

... so here's what the nice people over at North Atlantic Medical did to help me out. ...

Sounds as if they really did try to work with you. Good DME. Hope it continues to go that well.

... Also, even though I knew the answer, I asked if she had the cable and software for the machine. You can guess what she said to that. So, I need to find out where to get that Jazz (the cable I can find, it’s the software I’ll need help w/) ...

Hmmm... I'll provide some pointers.

... No clinical menu for me, just her, so again, that I’ll need, as I’m an anal fiddler. ...

Okay, I'll sound like a broken record ... you might find a PM with some pointers ...

... Although, I guess this machine takes time to “adapt” to your breathing pattern so I’ll leave it as such for at least the first month and go from there. ...

The real adapting will be the time it takes for you to adjust to the way it works. It took me about one month. And remember, I've been at this for almost 20 years. But once you get used to it, it is heavenly, since you actually CAN sleep with it.

... Second, I really wish I just had a vented mask, as it would negate the whole purpose of the extra 1’ of hard adapters coming out of my face… but again, we’ll wait the month, try it as the doctor ordered and go from there. ...

Sounds like it will be a bit difficult. You might want to see if you can support that monster somehow.

... I’m not psyched at ALL about the constant requirement of cleaning the mask, tubing and the daily ritual of dumping the humidifier out, airdrying and refilling at night, with distilled water no less. Does everyone REALLY do this? I feel like I’ll need a dishrack and hanger boards in my bathroom for all this gear. Geesh! But I digress, if it helps me…it’s worth it. ...

No way! If you use distilled water you only need to add water to the tank. Ditto for the hose. I do clearn the mask more than that, but no where near as often as many folks. About once a week or so. And I use those CPAP wipes off CPAP.com.

Okay, every now and then (once every six months or so), the machine needs a really deep cleaning. I change the filter. I wash, rinse and dry the humidifier tank, I clean the hose, and I also wash, rinse and dry the mask. But it's just not needed all that much.

Here's hoping this does help you with your sleep problems! Many of us found the ASV units to be a Godsend!

[phorts]

THanks for all your advice and support John, and thanks again for the PM assitance, it's very much appreciated. The Adapter log (as i will call it now) is certainly going to be a nuesaince until i get that piece of hose to bring it off the mask, until then i guess i'll have to deal...

My therapy just cannot wait any longer...

it's GO TIME!

[snnnark]

Hi Keith, just curious about why they are still going with the nonvented mask if you are getting the Adapt SV? You said that the rebreathing + cpap did not produce significant results and, from my experiments with rebreathing, it's not very pleasant!
And (if you don't mind me asking) do you know what is causing your periodic breathing?

Thanks

Deon

[phorts]

Snnnark, I did say that the Non-Vented Mask + CPAP did not produce significant results, but the second part of my Complex Sleep Study was done with an Adaptv SV and the same Non-Vented Mask setup, which did produce a significant drop in my AHI and Centrals.

So, hence the prescribed Non Vented Mask w/ VPAP Adapt SV w/ EEP of 6 and Max PS of 11.

However, i saw the script from the doc while the tech was programming my machine said EEP 7, Min PS 3 Max PS 8... Weird.. Or maybe i'm just understanding how the machine works, because i seem to remember seeing something where the Max PS is the Min + the Max or some weird stuff like that..either way, i'm not messing with it but will talk to my doc about it so as to understand it more.

So, without further adieu...my first night .


Went to bed LATE (2:00pm).... was just up reading forums, playing games and just ....being reluctant to go to bed..i wanted to go to bed DEAD tired so as to increase my chances of falling asleep..or at least that's my excuse.

I had it all set up before bed so all i had to do was slip into bed, throw on the mask and the machine kicked on automatically. Pretty easy.


I will note, however, that i used my dental device and breath right strips for 2 reasons:

1. To reduce airway resistance - I figured the easier it is to get air into me, the better.
2. Improve seal - With the dental device, my jaw is protruded outward slightly and held into place, thereby creating a consistent seal area. Without it, my jaw slacks back (I have a fairly renounced chin and is probably part of the reason I have elements of OSA to begin with) and the seal is often broken. This was part of the reason previous attempts at CPAP were unsuccessful
The Cons of doing this are:

1. I drool more w/ the Dental Device
2. Pain in the Arse…but I’m used to it.

So, I’m forced to lay on my side given the awkwardness of the adapter log connecting my mask to the rest of the tubing. But, I generally sleep on my side anways so this isn’t TOO big of a deal, still, I’m not able to move into too many positions…like, I cant sleep on my OTHER side or back without some pretty obnoxious tension.

So I lay, trying to get accustomed to the in and out feeling of the Adapt SV, no vents in the mask make it so that when the machine is going from higher pressure to lower pressure (feeling sorta like a vacuum) and you want to breath in..it aint happening. Little tiny bouts of anxiety set in as this happens but I try to remember to relax and trust the process….

I become annoyingly aware of my breathing rate and depth and try to allow the machine to do it’s thing, but it feels as though it’s breathing faster than I want to..so I just try to keep my own rate, and not be forced to fall into step with it because I felt like I was hyperventilating a bit….That, and I didn’t want it to think that’s how I normally breath, so, I think eventually it figured it out, but I felt that as long as I could fall asleep, the rest would take care of itself automatically, without me overthinking everything.

Damn “Smart” machines..lol. I can tell it’s going to take some getting used to, but I’m in it to win it….

So, about 30-45 minutes in I get this sense of drool on the corner of my lip. OMG how annoying is this? So, against my better judgement I try to stick my finger in there and wipe it away, but I break the seal, the machine goes nutty and the gasket in the mask pulls away from the plastic rim… UGH!. So, I shut off the machine, and go to the bathroom (now 3:00am) to adjust the mask and calm down.

(Meanwhile, the fiancé is unpleased…but knows it’s all part of the learning process and I imagine is sympathetic..maybe a little? Heh.

So, I get back to business and slip back in… finally finding my “comfort” zone (If there can be one at this time) I fall asleep..last I remember it was 3:30am.
I remember dreaming, and then waking up at 7am (which has been happening because of my work schedule, this is not out of the ordinary). However, I was unable to get back to sleep w/the mask on. So, again, against my better judgement, I removed the mask (keeping the dental device in) and fell back asleep. I was relieved…

I awoke again around 9:00 and got out of bed around 9:30… feeling like I usually do, like I got hit by a truck the night before….. joy.

I’m not expecting instant gratification… but some sign of encouragement would be nice. But I’m gunna keep on truckin as best I can.

Moving forward I have two concerns. (for my doctor)

1. Should I be using the dental device?
2. DO I really need the Extra tubing and the non-vented mask? I’d like to try w/o it. I imagine their answer to this will be to “see how it goes for this first month and go from there). Yay

Another weird thing I noticed was that when I got up to go to the bathroom I noticed my mask was fogged up pretty bad. My heated Humidifer was on 3 (out of 6) so I turned it down to 1 or 2. I didn’t notice it foggy when I took it off in the AM…

Also, with all the extra crap (Anti-Asphyxia valve and Whisper Exhaler valve, the setup was pretty loud, louder than the fan we use on low to medium every night. I thought this particular machine was supposed to be pretty quiet?

Lastly, after some investigation, and help from John, I was able to determine that my version of the Adapt SV is NOT the enhanced, and therefore does not provide the additional AHI and HI results screens that are helpful in monitoring your success with the machine. This is very disappointing to me as I explicitly told the DME Providor that I wanted the “latest” model and she assured me I was getting it (refurbished as it may be). I will be making a call Monday AM about this.

So, despite that, I have the results of my first night. I don’t know what the heck they mean, but here they are!

Leak: 18
Avg Pres: 8.4
VT: 320-961
Resp Rate: 11-17
MV: 4-11

Sounds good? Uhh… I dunno. I’m off to see the wizard about those. And maybe, If I can find my cable, I’ll be reading the data off this machine, although I don’t want to invest too much time into this machine as I’ll hopefully be getting the advanced version with the AHI, AI results.

SO, that’s my first night… hopefully night 2 will be a little better. Cuz it, and I, can’t get much worse!

Thanks for tuning in to another episode of my saga!..till tomorrow!

[snnnark]

Thanks, I hope the next night goes easier!

[JohnBFisher]

... So, without further adieu...my first night ...

Lordy, lordy, lordy! Does that sound familiar! I don't have that mask setup, but any mask with this machine can be "interesting".

It does take some time to get accustomed to it. I was so sleep deprived that the first night on it was much better. It just was not long enough. It's taking me time to adjust to the fact that I can sleep longer than four hours.

Yeah. I think they will want to see you try it for a while to see how you do.

As to the numbers ...

... I have the results of my first night. I don’t know what the heck they mean, but here they are!

Leak: 18
Avg Pres: 8.4
VT: 320-961
Resp Rate: 11-17
MV: 4-11

Sounds good? Uhh… I dunno. ...

I know THAT feeling. But let's look at the numbers and see what we can see.

Leak - This is the 95th percentile (see page 16 of the provider's manual). How do we know what's normal.? Actually, that IS a problem. I would normally point you to the ResMed information. It would show the normal vent rate. But that's not what you have. Does the leak rate of 18 exceed the vent rate of your vent on your setup? It seems to be a good number. Normally below 30 is an adequate value. But with this setup...? How should I say this? Ah, I know! And I quote "Uhh… I dunno. ..." !!

It's probably not bad. Especially considering the mask you have. I think the mouth piece helped more than hindered. Yeah, I also drool when I use something like that. Might need to go back to it. The Quatto FF mask really pushes down on my chin.

Average Pressure - 8.4 is only a little way up from your EEP of 6 (what the DME set, not what the doctor prescribed). So, it's increasing the pressure some to handle the apneas. But not all that much or all that long. Otherwise the pressure would be closer to EEP + Max PS (or 6 + 11 = 17). It's not going close to that. So, that's a good sign.

Hmmm... The manual says this is the Median mask pressure, not the Mean. I wonder if they meant median or mean. If they want AVERAGE, then this is the MEAN mask pressure. The Median value is just the middle data point out of all the data points (which were sorted). I will assume it is MEAN that they mean.

VT - I am not qualified (don't have the knowledge) of what is normal for this one. This is the tidal volume in milliliters.

Respiration Rate - You might be a bit slow there (hypoventilation), slower breathing (and heart rate) is normal during deep sleep. The better news is that 17 is not terribly high, so you are probably not hyperventilating. The smoother this gets (closer together) the less likely you are having periodic breathing. But the key is that this machine watches the minute ventilation and helps you maintain a consistent breathing pattern.

MV: I am not qualified (don't have the knowledge) of what is normal for this one as well. This is the Minute Ventilation in L/min.

I would share my numbers, but I don't think they are representative of "normal".

[phorts]

Thanks John for your help, as always.

Night 2 went a little....better i guess.definitely different.

First i did not use the dental device last night, and shaved my scruffy off to try to help w/ seal..

Bed Time was 12:00 and I took the mask off at 7:45 - So 7 hours and 45 minutes on the hose... i took if off after than and put my dental device in and fell back asleep for another couple hours..probably a bad idea...Especially cuz i forgot a V-Day card and was going to wake up early to go get breakfast and a card...oops.... now not only do i feel ehausted, but i'm in the doghouse..hah

I did wake up a few times throughout the night, but was able to fall back asleep with a fair amount of ease. No real playing with drooly masks and seal issues, but man is that adapter setup frustrating!

So, the nubmers "seem" a bit better according to John's comments:

Leak: 14
Avg Pres: 8.6
VT: 351-933
REsp Rate: 12-18
MV: 5-11



The past couple days, during the day i'm having trouble breathing now. Feel pretty short of breath at all times, coughing constantly to try to clear what feels like a congested chest.. Heart palpitations...just a not so comfortable feeling in there...i dunno, it's not pleasant. It's not enough that i'm exhausted but this is making me feel like this is not working out so well..

Is this normal? or is this something related to the Co2 rebreathing?


One last thought, and it's ot pleasant, but the last thoughts i've had before falling asleep the first 2 nights is that i will not wake up...cuz of C02...or something... scary...but i have been able to get over it fairly quickly and try to remember the hundreds of other people on this therapy and the thounsands on CPAP.... and just pray..

Ok, so i wont let that be the last comment....too dark...

Last comment: I love Baseball and can't wait for the Red Sox to kick up!!!

AndHappy Valentines Day!

ok..later

[phorts]

Here's my Mask Setup:



Mask -> Adapter -> Anti-Asphyxia Valve -> Adapter -> Whisper "Exhaling" thing -> Tubing

Joy.

Yeah, that's about 7" of extra garbage...

So, apparantly they "invented" a 3-4" piece of tubing that you connect to the end of the mask and to the anti-asphyxia valve so it reduces tension. I'm sure it'll help, but i still have to keep that Adapter "log" on the bed w/ me because once it falls off it just weighs the mask down so much it's got no chance to stay sealed on my face...

Right now i sleep on my side and hug the adapter so as to cradle it and prevent it from falling off.. "sigh"...

[dsm]

Phorts,

What a contraption

Hang in there as one day soon Resmed may add a PaCO2 version of the Vpap Adapt SV to their range
It constantly monitors PaCO2 levels & adjust the pressure & pressure gap as needed to keep CO2 at an
acceptable level.

Good luck

[BleepingBeauty]

Here's my Mask Setup:

Mask -> Adapter -> Anti-Asphyxia Valve -> Adapter -> Whisper "Exhaling" thing -> Tubing

<snip>

i still have to keep that Adapter "log" on the bed w/ me because once it falls off it just weighs the mask down so much it's got no chance to stay sealed on my face...

Right now i sleep on my side and hug the adapter so as to cradle it and prevent it from falling off.. "sigh"...

Have you tried to support the hose above you? I would think suspending the weight of all those extra adapters/attachments would make you far more comfortable and give you some freedom of movement when you sleep. (One problem with routing the hose overhead can be the noise of vented air hitting the hose, but that wouldn't be an issue with a non-vented mask.) Apologies if you've tried this already and it hasn't helped. Just thought I'd mention it in case you haven't.

[phorts]

Thanks BB, i havent tried that, but because of all that weight and the 90 degree angle, it just swings back to wherever gravity takes it (down). So, until i get some extra hose, or switch to a vented mask w/o all this extra goodness, i'm stuck snuggling with plastic to support it...

Un-Fun. hah.

Thanks for the suggestion.

[snnnark]

I think BB is talking about one of these https://www.cpap.com/productpage/HoseBu ... ystem.html
It makes a difference! No more tugging when you roll over!

P.s thanks for the photo. Is the vent in that Whisper Exhaling thing?

[phorts]

Snark,

THanks for the link, i didnt know those existed..

However, with the 90 degree angle, even with that thing, there would still be a great deal of tension involved. worse so i imagine than just having it rest on the bed.

The adapter setup would basically be torqued over my head like a snorkel...

hey... now i dont need to rent a snorkel!

silver lining.