third mask - new asv user

Hi all. I went from the nasal (most comfortable but won't work with mouth breather), to a hybrid that gave me extreme congestion for three days and irritated my nostrils after using it a couple hours. I got a new mask guy this time and he actually measured my face. He also uses cpap so I felt like he was a little more understanding. Anyway he gave me an F&P Simplus and showed me a few things about my machine like how to test of for leaks and how to look at what happened in the night. Grateful for that as the other guy just told me he set everything up and not to worry about the settings! Nice. Anyway, when testing this mask it shows no leaks. In fact it seals up really tight and feels comfortable for the entire 40 sec test (except that it is blowing at maximum I'm told…but not sure maximum of what?) So that's all good but when I've used it the last two nights it starts of very comfy….though there isn't much room as it is pretty small. I quickly get over the clausto feeling and push the ramp button so it starts at 5 and 9 and after half hour increases to 9/13 where is's supposed to be. Even if I lay flat on my back and don't move, eventually the mask starts blowing some air out of the bottom corners making a noise (similar to snoring). I have to hold it down or move it to stop but it keeps doing it, i keep moving or holding to stop and needless to say I can't go to sleep. If I shift my position its the same thing. I tighten the mask and it helps a little for a short time, then back to the noise again. And I'm getting a sore face so I know it's too tight. I've forced myself to keep it on over four hours but it's a challenge. Once its off, I roll over and go sound a asleep! We have hooked up a camera in my room and I wear a body media that documents quality of sleep so I know I'm tossing and turning and moving and waking so it's not really sound asleep but it sure feels like I'm sleeping at least.

When I checked the machine it showed 0 leaks! The other numbers don't look so good either but I'm not sure what they all mean. The DME told me the AHI should be between 0 and 4 if the machine is working. This morning it was 19.5 and it showed it started at 11.8 then went to 12.1 (with other masks) and now it's 19.5. I think that means it isn't working?

The periodic breathing number was 0% unsure what that means
90% epap was 9.0 ??
Average PS is now 8.6 with prior numbers 6.7, then 6.8 No idea what PS means

I'm still really new. I'm trying to make this work. But I am certainly getting less sleep now than ever and if it is making the number go up or not change I wonder if it ever just gets to a point that its quality of life becomes more important. This is Central SA btw. My previous post was Sleepless in Seattle and a couple of you were so helpful…...

Is your central apnea hypercapnic or hypocapnic?

wow. I have no idea. Only what the doc said…it's rare. I'll have to ask when I see him next but that's not for a month since I only started trying to use this machine a couple weeks ago. He said idiopathic central. This mask also dries out my eyes though I can't feel any air going into my eyes. What is the difference between the two hypo and hyper? Feeling pretty hopeless about this at the moment…probably lack of sleep making me in depressed state

Check out the glossary for definitions of the terminology you are uncertain about.
http://sourceforge.net/apps/mediawiki/s ... r_Glossary

Sounds like you are getting your results off the LCD screen data.

Amronjohnson wrote: When I checked the machine it showed 0 leaks!

What it showed was 0.0 % of time in large leaks. That's what the onscreen data relates to. Not all leaks amount to a Large Leak..and what you are seeing on the LCD screen pertains only to % of time spent in large leak.

I would suggest using the detailed software reports for evaluation of what is going on because you need more details than the on screen data offers.
I think I sent you the information on the software for your machine...if I didn't let me know and I will get it to you.

PS is pressure support...the difference between EPAP and IPAP.

90% numbers just mean for 90% of the time you were at OR below that number..people tend to forget the "or below" part of the definition.

Amronjohnson wrote:This morning it was 19.5 and it showed it started at 11.8 then went to 12.1 (with other masks) and now it's 19.5. I think that means it isn't working?

Something definitely needs improvement.
Do you spend much time awake when the mask and machine is on? If so then some of that AHI might be awake stuff getting flagged ..remember the machine doesn't know if you are awake or asleep.
You really need to be getting a handle on the software reports because you need so much more information than what the on screen data offers.

if I lay flat on my back and don't move, eventually the mask starts blowing some air out of the bottom corners making a noise (similar to snoring).

That happens to me too on my back (as well as every other position). What happens is your jaw relaxes and falls back and out of the mask. That is one reason I like the hybrid because it has a chin flap that reduces that, however I can't stay on my back for long because of that.
You might try to add a chin strap instead of tightening the mask. Or lay on your side if possible, hanging the mask over the edge of the pillow and tuck the hose under your arm. The tension of the hose under your arm will keep mask in place better.

Pugsy, you are so helpful and patient! I greatly appreciate it. Today I am super depressed (I'll get over it I'm sure) but feel like I'm some kind of time bomb waiting to explode. Thanks so much for the definitions and especially for the comment on the AHI. Yes, I'm awake most of the time I have the mask on. I turn tv on for distraction and lay there praying to go to sleep. I eventually turn tv off and just lie there. My body media shows I do in fact drift off for 15 minutes, then wake. Most I actually slept was 1 hour and 15 minutes so knowing that impacts the AHI makes a huge difference to my frame of mind. Can't thank you enough.

I'm not sure what software you mean. I have seen posts referencing it but haven't paid much attention because I am still getting a grip on terminology and what this is really going to mean for me and my life. Making it worse, I'm not much of a techie….kind of incompetent in fact. I have that cellular thing they put on my machine and told me it would automatically send data to the respiratory person. Not sure what they do with it…maybe share with my doc. So, is this software for purchase and put on my computer and how would I get the info from my machine?

Anyway, can't thank you enough for your help. You just come online and answer questions without judgment. Now, can you tell me what caused this and how to cure it forever?!! (: jk

Blackspinner, you too have been extremely helpful. It's true when I used the hybrid I did not have the problem with the air blowing noise but I the little nose plugs caused huge congestion issues. I will try the chin strap tonight and maybe even eye covers since my eyes seem to be drying out as well. I also remembered last night my stomach started hurting a little and I was getting air in my stomach. Is that from the machine blowing too much? AT times it feels like just natural…like I could hardly notice in blowing anything like I was breathing on my own, then other times its hard. I guess that's normal?

Blackspinner, you too have been extremely helpful. It's true when I used the hybrid I did not have the problem with the air blowing noise but I the little nose plugs caused huge congestion issues.

Did you play with the humidity settings? If mine is too low I get lots of problems. Other people have the opposite. It sounds like fit wise it is your best option. Of course some nasal passages are very fussy about air movement too. My ENT said using a nasal mask was actually better for us then using a regular FFM.

Ah, I remember you now...can't sleep with machine yet. Bad, bad insomnia.
Don't worry about the AHI on the machine...there's a good chance the bulk of it is awake breathing flags anyway.
Don't worry about the software right now either. The only thing that works with your machine is Encore Pro 2.12 and if you know you are awake a lot...there's a good chance the AHI is related to awake breathing.
You need to get used to the machine and get some sleep first. I know you are working on it.

Keep trying masks until you find something that suits you. Normally I tell people the mask is the hardest part but you have a double whammy with the insomnia issues not totally related to therapy too. So you have the mask part and the insomnia to deal with.

Can you sleep with a nasal mask? Just sleep...forget the mouth breathing for a moment. Do you think that you could actually get some sleep and to heck with leaks or mouth breathing for the time being? Or did the act of mouth breathing wake you up?

Hi Pugsy, yes, the nasal mask was the least intrusive and I REALLY wanted it to work. As long as my mouth was closed I was comfortable but as soon as I started drifting mouth opened the teeniest bit it woke me. I then went to a hybrid and really like that in terms of the fit around my mouth, comfy, no leaking but congestion was horrible and those little nose things were irritating after awhile. They did adjust my humidifier since then to 3 and told me to keep the heated hose set at 1. That helped a lot with the congestion the first night with this FFM (4 hours until I took it off so I could sleep), then the next night (last night) I forced myself to keep in on for four and a half hours but I am having some mild congestion today. I'm thinking I might go back and try that hybrid again now that they've adjusted the humidity to see if that was the issue. I had severe congestion for three days and really only had it on a few hours. Do you think I should put in a room humidifier as well as the one on my machine? would that help?

I just started reading the bumps in the night. I am so grateful you are helping others through this. Last night I know I was swallowing air. Not sure what the solution is but I see it is one of the issues you covered. Mostly, I was so anxious and upset by the 19.5 AHI on the machine I was thinking I might as well not make myself miserable trying to make this work if its going to stay that high. Your explanation that its counting the wake time and that I am indeed awake did a LOT to ease my fears and at least give me hope of making this work again. I guess with this Central (I don't find much info on Central - only obstructive) I really have no choice do I? No other options at all that I can see. I'm pretty healthy so I wish I could understand why I have this but in the meantime, I'll keep reading and trying to understand how to deal with it.

My doc just gave me an rx for Ambien. I'm both relived and scared. I need/want/must get some sleep but I don't want to be dependent on medicine either. I am going to try very hard to keep one of these darn masks on all night tonight.

I also had a number of problems with nasal type masks even though my leak rate were less then a large leak when they were over 24 I was still getting a number large number of centrals. When my Dr, and I discussed this a few months ago we decided to turn of the EPR and go back to a full face mask. She was telling me that she had read a newer study that was looking a leaks not in the large leak territory but higher then normal that was causing centrals due to the lack of CO2 building up in the mask to make your brain take a breath. You might try a FEM so more CO2 builds up,

Not sure if this will work for you but after I changed masks, increased my washing of the mask and face to decrease the leaks to under 24 I've had much better numbers. AHI under 3 with about 1/2 centrals.

Good Luck

Amronjohnson wrote:
My doc just gave me an rx for Ambien. I'm both relived and scared. I need/want/must get some sleep but I don't want to be dependent on medicine either. I am going to try very hard to keep one of these darn masks on all night tonight.

It is temporary to help you adjust - think of it as a sort of a walking cast.

Did they not show you how to control the humidity? It is something that should be easily under your control because it is for your comfort.

No they adjusted the humidity at the DME. I only get to adjust the hose heat I guess. I'm thinking I ought to be able to adjust anything I want since it's my body. I took a break from the whole thing and slept like a log. Tried it again last night as I was still super tired from the sleeping aid two nights ago and used the nasal pillow hybrid one and actually fell asleep for a couple minutes, woke, fell out again but only for a minute or two. I think I could feel my breath going away and the machine kicked in. I finally took it off after hour and a half and tried the FFM again. They seem to both be ok comfort wise (well, relatively speaking) but I simply can't seem to fall asleep without the pill which I hate taking. I think I'm going to just keep trying it each night for as long as I can stand it. But I do seem to fall asleep and sleep better and feel better without the machine. I'll ask them to show me how to adjust the humidity though set where it is seems to have reduced the congestion significantly.