Help: New ASV user. Here's my story.

[JohnBFisher]

... I can't believe so many people are offering their help. This forum is amazing ...

There is a strong sense of "Paying It Forward" in this forum. Others helped me, so I will help others. It makes this particular journey a bit more bearable. I personally try to help others with central sleep apnea, since I had so much problem trying to get it diagnosed and treated. I want to try to make the path a little smoother for the next person.

... I haven't had a problem sleeping with my mask, but it has been hurting my nose and especially my forehead. I have the ResMed Mirage Quatro. My wife noticed, after only 8 days, I was bruising on my forehead. Anyway, I noticed from another post that I could exchange masks within 30 days. I went in and they gave me the Quatro FX. It feels comfortable and there is nothing covering my eyes or touching my forehead. Hopefully I made the right choice. Does anyone else have thoughts on the Quatro FX. I try it for the first time tonight! ...

Glad you switched to the Quattro FX. They should have put you onto that in the first place. Hunt for the online guides for wearing the Quattro FX mask. Essentially, if you put it onto your nose first and swing the rest of the mask down onto your face, it will work well.

One note about the Quattro FX (and frankly any other mask). As the silicone on it ages, it will start to leak more. It becomes stiffer and tends not to be as flexible as it was when you first put it on. Because you have an ASV machine, you will start to have more problems with leaking. When you have a central apnea and stop breathing the machine ramps up the pressure a HUGE amount to help sustain your respiration. Essentially, it acts as a respirator rather than just as a BiLevel machine. These fast changes in pressure tend to cause the mask to leak. When the mask leaks it sounds as if someone is slowly letting out the air from a balloon and making it squeak and squawk. The mask does the same thing. Or it makes rather rude mask fart sounds.

[ And here you thought sounding like Darth Vader was bad enough ! 8^) ]

One way to tame this type of leaking is to use a mask liner to help improve the seal. I find this helps a LOT. It does not completely eliminate the leaking, but it certainly makes it much quieter. Here are three different varieties. I've personally used both the REMzzzs and the Pad-A-Cheek mask liners. I can recommend both.

http://www.remzzzs.com/Default.asp
http://quietusliners.com/
http://padacheek.com/

Oh, one final thing. I have been using xPAP therapy (first a CPAP unit, then a BiLevel unit, now an ASV unit) for more than 20 years. I found that when I first started to use CPAP that I would cough up a lot of phlegm in the morning. I discussed it at the time with my pulmonologist. At the time, I had concluded (and he agreed) that because the CPAP was keeping my airway open and causing me to breathe more deeply during sleep that my body was better able to clear my lungs than prior to CPAP therapy. Since starting on CPAP, I've rarely had Bronchitis. I would normally get two or three chest colds per year. Now I might get one, if that. So, it seems that (at least for me) xPAP therapy helps me keep my lungs clear and avoid problems. The only drawback is that I occasionally cough up gunk in the morning. The mount decreased with time, but I still do it some. Still it's a cheap price to pay for fewer serious chest colds.

Hope that helps.

[Bright Choice]

Just dropping in to wish you good luck. I remember that when I first got my ASV the first 15 minutes were so weird. I thought OMG what kind of a weird thing do I have going on here. Butit didn't take long to "settle in" and I am loving it.

My DH is just now getting over a cold and it totally passed me by - thanks for the comment JohnBFisher, I hadn't really related it to my ASV.

Good luck with your mask challenge. I never could get the Q FX settled down although there are some great tips here for help with it. I am currently using Mirage FX nasal mask successfully with ASV pressures and fluctuations and really like it although I still have to use chin strap and 2080 blue painters tape. Everyone is so different though - it just takes trial and error. My DME has been flexible with going over the 30 days and allowing me to try multiple masks.

Good luck!

[Woolybugger]

Thanks for the extra info JohnBFisher and everyone else.

The help that I'm getting here is amazing. I'm getting more from this forum that I've got from all my Dr.'s combined.

I did try the Quattro FX last night and it didn't go well. By 2:30 I took it off and switched back to my mirage quattro. I liked the way the Quattro fx felt, but it leaked so much and kept waking me up. I want it to work well for me! I wonder if I had it too tight?? My mirage is not comfortable, and hurts my forehead, but it does not leak at all. What should I do? I only gave the fx 1 night should I try and adjust it and get used to it?

I also found a way, but holding 2 buttons down for three seconds, on my machine to get extra info without the sleepyhead program. I don't know what the information means, so I am hoping you all can help me out. Here goes:

Over my first 9 days my averages are:

AHI: 0.2
AI: 0.0
Ave time 9 hrs
INSP Press. 18.8
EXP. Press. 10
Leak 1l/min
RR 15
MV 8.2L/min
vt 520 ml
EPAP 10.0
Max PS 15
Min PS 5

I think things are going well for being so new with this. My machine didn't take as long to get used to as I expected it would.

What extra info will sleepyhead give me?

Thanks again everyone for your help and support. -WB

[Woolybugger]

Oh ..... and I liked the Darth Vader reference. Might as well have a sense of humor about all this. Life is too short to constantly think about how much it sucks to have to were a mask to bed. We all have issues and luckily there is a machine that can help us with ours.

[JohnBFisher]

If you decide to stay with the Quattro mask instead of the Quattro FX, then you will want to look at the padding made by Pad-A-Cheek. That will help reduce the bruising on your forehead.

And I'm always happy to help with the humor. I sometimes tell people that I sleep with a leaf blower attached to my face .. or a shop-vac (in reverse) .. or I tell them that I try to replicate hurricane force winds .. or .. you get the idea. No point in taking ourselves too seriously.

Hope that helps.

[Mr Bill]

...
I also found a way, but holding 2 buttons down for three seconds, on my machine to get extra info without the sleepyhead program. I don't know what the information means, so I am hoping you all can help me out. Here goes:

Over my first 9 days my averages are:

AHI: 0.2
AI: 0.0
Ave time 9 hrs
INSP Press. 18.8
EXP. Press. 10
Leak 1l/min
RR 15
MV 8.2L/min
vt 520 ml
EPAP 10.0
Max PS 15
Min PS 5

I think things are going well for being so new with this. My machine didn't take as long to get used to as I expected it would.

What extra info will sleepyhead give me?

Thanks again everyone for your help and support. -WB

Sleepyhead will give you graphs of your nights data along a time line so you can see how things correlate.
Now your readings...
AHI = average hyponea index
This is the average per hour of three things...
CA = clear airway hyponea = your airway was clear, but you did not breath.
OA = obstructed airway hyponea = your airway collapsed and the machine intervened with higher pressure to open the airway.
H = hyponea = your breathing slowed down to almost not breathing. This happens when you loose respiratory drive.
An AHI of 0.2 is EXCELLENT! Most of us are happy with an AHI of 1-2 and start feeling lack of sleep for AHI any higher than that.

Ave time 9 hrs = This is your average sleeping time. I envy you. I am lucky to get 7.

INSP Press. 18.8 = This is the average pressure that the ASV ended up giving you for inhalation.

EXP. Press. 10 = This is the average pressure that the ASV ended up using to let you exhale.

Leak 1l/min = This is harder to read and depends on mask. Every mask has a constant leak rate so that when you exhale, it is swept out through the vent. You can feel a jet of air in front of you face where the hose attaches. That vent is specifically made to leak at a constant rate. This vent must never be blocked, its where all your exhales leave the mask. It seems such a small stream of air but its enough to clear each breath before you need to inhale the next. Of course it would need to be huge if you wanted to do work. But you can read comfortably. With software you get a plot of your leak line. A flat line is optimal, leaks show up as excursions. The ASV will try to compensate by delivering more air but too much and its called a "large leak" but you will be awake because your mask will be making all sorts of noise against your face.

RR 15 = This is your respiratory rate. That is, its how many breaths you take per minute, on average. My RR is higher, but yours is not out of the ordinary.

MV 8.2L/min = This is Minute Volume. This is the total amount of air you breath in Liters per minute, on average. This depends on weight and metabolism. I weigh about as much as you and I average 8-9 L/min.

vt 520 ml = This is your average breath Volume per Time of inspiration. Its calculated from the minute volume and the respiratory rate. I average around 500mL per breath also. People who breath slower but have the same minute volume, thus, have a larger VT.

EPAP 10.0 = This is the expiration setting given to the ASV but it is modified as needed by the ASV varying the Pressure Support (PS).

Max PS 15 = This is the maximum Pressure Support that the ASV is allowed to add to INSP Press. or EXP Press.

Min PS 5 = This is the minimum Pressure Support that the ASV is supposed to add to EITHER your INSP or EXP Press (also called IPAP and EPAP).
So, you will notice on my current numbers at the bottom of my post, My EPAP is 6 my min PS is 3 my average PS is 4.1 but my average measured EPAP is 7.0. Obviously 3 plus 6 is 9 but that average PS is whats added to EITHER my IPAP and EPAP and more is added to my IPAP than to my EPAP. My airway is mostly clear and most of my apneas are hyponeas that would become clear airway apneas without the ASV intervening. Clear as mud, right?

So, as you breath, if the ASV detects that you are lagging in volume, or rate, or it detects a clear airway apnea, or obstructed airway, or hyponea; it intervenes by ramping up the PS (Pressure Support) to fix the problem. It always trys to ramp it back down to keep the pressure as low as possible because in ASV patients there is always the problem of inducing clear airway apneas because of too high a pressure. Many of us on ASVs are on them because we have complex sleep apnea (CSA) which means we cannot tolerate a CPAP or BIPAP because at higher pressures needed to clear our airway, we stop breathing. The high pressures clear out too much CO2 from our lungs and we loose the drive to breath. The ASV tries to remedy the situation by applying only as much pressure as needed, and also prompting us to breath when we stop breathing.

Whew! That was a long post! Hope that helps.

[JohnBFisher]

... Whew! That was a long post! Hope that helps. ...

It should! A great post that clearly explains what all those numbers mean. Thanks for taking the time to do that. It should help Woolybugger better understand what is going on with the therapy and machine. Great job!

[Woolybugger]

Wow!
Mr. Bill ...... you are the man. Thanks for taking the time to do that.
I read it twice and I'm still trying to sort it all out.
I'm going to read it a couple times more before I ask any questions.......that's a lot of info!

[bemused]

Hi Woolybugger,

Just a note on your daily AHI you posted, I am just finishing 2 week trial on S9 Adapt and also found reported AHI dropped to 0.0 on 3rd day (and 4th and 5th) sadly it was just the machine not reporting (although all other data continued ok). I pulled power for 10 seconds and reset the machine, has worked correctly since (my AHI now in 2 to 6 range). Does seem to be an occasional bug with some S9 machine on initial usage, hopefully yours really is zero! Don't let me put you off though, this is a wonderful machine, very versatile and effective with complex apneas.

[Buggstzer]

What could I look for in Sleepyhead graphs to determine if there are undetected episodes? I'll do the reset tonight before going to bed.

[Woolybugger]

I have to have a colonoscopy and an endoscopy on Thursday.
I just realized that I have to have sedation.
Is it OK to have sedation with central apnea?
Thanks. wB

[JohnBFisher]

I have to have a colonoscopy and an endoscopy on Thursday.
I just realized that I have to have sedation.
Is it OK to have sedation with central apnea?
Thanks. wB

Be certain you discuss this with your doctor. Explain that you will need ventilation during the procedure. Be VERY clear about this. Explain that you do NOT breathe while asleep - not just from obstructions - you simply make no effort to breathe. Tell you doctor / anesthesiologist that you make no effort to breathe while asleep. If they sound as if they do not understand, explain that it is a mild form of "Ondine's Curse". For the longest time a lot of doctors were never taught about sleep apnea, let alone central sleep apnea. But most have heard of "Ondine's Curse".

While trying to get my central sleep apnea treated, I even ran across one doctor that told me that I could not have central sleep apnea because it is so rare. *GADS*. I asked him if my sleep studies showed central sleep apneas. He answered "Yes, but you can't have it because it is so rare." Always remember that no one else is as concerned about the healthcare you receive as you do. You sometimes have to push for the right answers.

The good news is that most anesthesiologists are VERY good at what they do. They will help you maintain your breathing.

[Lorielaine]

Hi,
I'm new to the site. Was diagnosed with apnea 7 yrs ago. Got a machine. Used it about 2 nights and said NO WAY I can do this!!! So then i had nasal reconstruction then had my uvula removed. Neither seemed to solve the problem and were miserable to go through. Now 7 years later I'm so exhausted, depressed and never feel good. Im not overweight but i do have high blood pressure and anemia i always feel like im craving oxygen. I decided to get out the machine and give it another try. I got a few new masks I am trying also.
I've used it about 6 nights now. I've woken up a few nights and started crying out of frustration. I'm so determined I will not give up!
I feel strange. Like during the day sometimes when I take a breath I feel the sensation of having the mask on. My chest also feels strange. Overall I feel better and my husband says he can see a difference.
It's so exciting in the morning to look at my machine and see that I've actually had a few hours of real sleep.
I live at an elevation of 5200, I'm wondering if anyone has had any problems with the pressure setting when traveling and sleeping at different elevations?
Thanks to everyone who posts on this site. I've been reading it every night for the encouragement
Lorie

[Woolybugger]

Thanks JohnBFisher.

Everything went smoothly, and luckily the anesthesiologist knew about central apnea and was able to calm my nerves. They were searching for answers to my anemia and everything was clear both ways Don't know what that means for my anemia, but it's still good news.

Things are going well with my VPap. Still getting about 9 hours per night (that will change soon though since my wife and I are expecting baby #2 in less than a week!) I do feel like I'm getting into better sleep cycles that I did prior the the VPap. I'm also getting very little leakage from my mask, so I have no complaints with that.

My machine has still been saying 0.0 each night for my AHI though. I think there must be something wrong with the machine. I did what bemused said about unplugging it for 10 seconds and then it started reading at 0.2 AHI for the next 2 nights. Could my AHI possible be that low?

If I plugged my card into the sleepyhead software would it give me the same information?

Thanks again all. -wB

[JohnBFisher]

[quote="Woolybugger"]... Could my AHI possible be that low? ...[/quote[
Yes. These machines can be amazingly effective.