At my wits end

[Werewolf1479]

Its 2:30 AM and I've been woken up, probably for the rest of the night, by this infernal machine yet again. I really want to toss this thing out the window but my girlfriend is very convincing when she asks me to keep trying it (she is in the medical field and knows the risks of apnea). Forgive my verboseness, I turn into a much less entertaining and less grammatically correct version of Faulkner after midnight.

So my doctor and his office are horrible. They don't return phone calls, they didn't give me any choices in product (or even let me know there was choices) so what I have is a Fisher and Paykel Icon machine. I think my setting is 10, but I'm not sure, the doctor and his people have been about as transparent as a battleship hull this whole process. I keep reading posts about people getting data and stuff from their machines, I'm a scientist by trade, I want some data lol

So, I've been reading these forums and you all seem like experts in one way or another, so let me tell you my issues. I started with a nasal mask but could not tolerate it. I felt like I was suffocating and if I opened my mouth to breath a rush of wind would come out that felt strong enough to knock things off a shelf across the bedroom. After 2 weeks of trying it and getting no sleep and having performance issues at work and on the ice, I finally called the "CPAP nurse" every half hour till they picked up and I got them to trade with me for a full face mask, which I believe is the Fisher and Paykel Forma (this doc must get kickbacks from this company or something).

I actually like this mask in terms of the fit. I can tolerate it, the pressure doesn't seem bad, I can breath through my nose or mouth without all sorts of pressure (though I wonder, is it actually working?) The problems I am having relate to leaks and exhaust noise. The leaks I hope to take care of with "Full Face Anti-Leak Straps" I ordered today, but the exhaust noise I have no idea what to do with. So the design of this thing has a bunch of air holes at nose level which make a lot of noise if they get obstructed, ok, no problem, don't sleep with my hand on my face. But where the hose connects to the mask it has some oddly designed valve with these two holes on each side and the air just jets out of them very loudly. If I pinch my fingers over them the noise is gone and I can still breath. I neither understand the design of this valve nor if these holes are necessary for proper function. Here is a color corrected picture I made:



I've tried ear plugs, which work, but it has the effect of amplifying any leakage squeaking that I wouldn't normally hear without plugs, which is also a pain.

So Cliffs(TM) notes:
Ready to send CPAP on first class flight out the window.
Is the lower pressure feeling (in the throat) of the full face mask indicative of lower or zero quality therapy?
Can I plug those noisy holes on the valve? If not, any other solutions?

Thanks in advance.

[zoocrewphoto]

Welcome to the group. It is a tough adjustment with a steep learning curve, but it does tend to get better with practice and experience. This is a great place for getting answers. I think some of the Icon machines do have data, so if you post which one you have, those who know will help you figure that out.

What general area do you live in? Maybe somebody can recommend a better doctor for you. That might help you get a different machine with full data if your machine doesn't have it.

As to the two holes you mention, are there any flaps in these holes that can open and close? It sound like it might be the anti-asphyxiation valve, but it should be open when the machine is off and closed when they machine is on. This allows fresh air in if the machine should turn off while you are wearing the mask. It is possible the valves aren't working correctly.

[kaiasgram]

Werewolf, welcome to the forum and may I just say you do not lose your sense of humor after midnight !

If you can double check on the exact model machine it would be good, since some Icon machines do offer full efficacy data and some do not. If it is the Premo, according to what I just read it is a full efficacy data machine. The software for that model, Infosmart, is not so easy to obtain but jencat talks about it in this thread: viewtopic/t96691/viewtopic.php?f=1&t=94 ... rt#p888280

There's a video tutorial on the Icon series which will show you how to access the clinical menu -- you can see your pressure settings there. Use the link at the bottom of my post in my signature box.

I'm not very familiar with the full face masks but lots of folks here will be able to help with the mask issues you're having. I'm pretty sure those two holes you're talking about are the anti-asphyxia valves -- my understanding is that they should be closed and only open automatically when the pressure drops to zero (as in a power failure).

Mostly I wanted to just welcome you -- your sense of humor will get you a long way in getting used to this therapy, seriously!

[Werewolf1479]

Thanks for the replies!

I'm in North Alabama, so not a lot of choices doctor wise around here.

Zoo, your post got me to look inside a bit further, there are two thin flaps in there and they were gummed up somehow, almost like they melted a bit. I thought they were a solid piece. I freed them up with some thin scissors and they now move to cover the holes if I blow into the valve. Hopefully it will work better now! Thanks!

kaiasgram:

Thanks, I'm trying to keep positive, though I must say my mood before typing that out and calming down was quite rough. I really want this to work though. I haven't felt like I've had a good nights sleep in 20 years. I will definitely check that out in the morning and see if I can get the data off the machine. Thank you for that.

[kaiasgram]

I think I was editing my post while you were posting -- just wanted to make sure you see the link to the machine video tutorial in my signature box below. They have a video on the Icon series machines which includes the premo.

Hang in there!

[Sheriff Buford]

Welcome Werewolf! I too, like your humor!! You be my kinda' man! When, I first started, I wanted to drop-kick that conclaption into the next county. I say KEEP GOING. You'll whip this sucker...

Though some doctors are "better" than most medical folks in this field... especially the DME's (the place you get your "cpap stuff) most need to be tazed on a regular basis (daily). Educate yourself on this disease and don't take any crap off these folks.

The "air jets" you refer to are mask vents. All masks have them. They remove the CO2 from the mask generated by your breath. You want to get rid of the CO2, so... don't even think of covering them up. You may not wake up one morning.

I did not see what machine you have, but the Resmed has the EPR feature and Respironics has the same thing, but they call it something else. This feature will reduce the mask pressure when you exhale which can help eliminate that suffocating feeling. I started using this feature after being on cpap therapy for several years and was surprised the comfort-level was nice.

The noise level is something you'll have to get used to. Work all your issues here... you'll beat this disease, and start feeling much better.


Sheriff

[Werewolf1479]

Thanks Sheriff, I just looked and I actually have the F&P Novo which I guess means "compliance only data" based on the link above. Luckily I had hit my out of pocket maximum for the year already when I got it in December so I didn't pay much for what sounds like a very limited device.

[squid13]

I've been wearing the Forma for about 2 1/2 year's and I wear it a little snug when going to bed, after your asleep your face muscles relax and it's just right for me. You might want to give the mask a good cleaning especially the part that was a little gummed up. Make sure you wash your face good and shave your stubbles before you go to bed so you can get a good seal. A lot of people don't like the Forma but for me it is the perfect mask for my face. Welcome to the land of the Hose Heads and welcome to the forum.

[Pugsy]

The machine doesn't happen to be a Novo + does it? The plus designates a newer/latest model and another forum member seems to be able to get at least AHI from her Novo machine and apparently the new plus machine model offers AHI.
I have no idea how a person would tell if it is a plus or not though.
See this thread and post from Bama Rambler
viewtopic.php?f=1&t=96687&start=15

[Werewolf1479]

It is a Novo +! SO I pulled the stick and it did have a couple of executables on it (setup.exe and another called info something or other.exe) and a data folder. I hesitated to run the exe files but maybe I will give it a shot.

[Pugsy]

Check your Private message box please.

[DEXSUZ]

Mr. Werewolf:

First of all, best of fortunes. I have a Quattro FX - the best of many FF masks I tried in the initial stages of using CPAP - and have learned how to succeed and thrive with it after an awful first few weeks in early 2013.

I was a lousy sleeper my entire adult life and began CPAP. Right off the bat - like you - I had many problems and was frustrated as hell but have found nocturnal bliss as I got used to the gear and the way it works.I've got a simple program that did wonders for my adaptation to assisted sleep. Here it is:

This is the four-step program I devised. I had a tremendous sleep study at the local hospital but ran into a granite roadblock as I attempted to get accustomed to masks on my own. You might want to give this a try:

My main advice is to back away from immediately trying to do all-nighters with your full-face equipment. Use my four-step weekly plan which has worked wonderfully for me:

1) During the first week sit, watch TV, or read with your equipment whirring away next to you. Get accustomed to the sounds, feelings of the moving air, and all the external trappings of the great chance at quality sleep you are nearing. Do NOT go to bed with the equipment.

2) Take the phone off the hook, draw the shades, evict everyone from the house, don't think about any nearby clock, and loosen your clothing as you lie on your bed in mid-afternoon. Turn on the CPAP gizmo, put the mask on your face, and close your eyes. Think peaceful thoughts, whatever they are to you. At some point in the week you WILL fall asleep. After you have this nap, you'll be amazed at what a refreshing experience it was.

3) During the third week have all your CPAP gear ready for action as you go to bed for the night. As you've done so many times throughout the years, you'll awaken far before morning. When you do, slap the mask on your face and turn on the CPAP gear before your groggy brain has any idea what's going on.

4) After successfully completing the first three steps at your pace, decide on a night (mine was March 3rd, 2013) when you have full confidence and will retire for the night WITH your mask on. You'll succeed!

My biggest mistake was expecting everything to go perfectly from the first night. It rarely occurs because the brain must be retrained after all those years of awakening in the middle of the night. One must be patient and keep anxiety as far away as possible. On March 3rd, I had a goofy sort of celebration to mark one year of refreshing sleep I never had - over four decades - before last year.

By the way, I went to bed at 11:00 a few weeks ago and awakened non-stop at - ready for this? - 7:00 the next morning. For DECADES a sleep of that sort was only a dream; now it's a reality.

Be patient, best of luck and God bless

[library lady]

Welcome to the forum, Werewolf! I am a new CPAP user myself, first night on it was Feb. 3. I have a FF mask too (see below), and I struggled with leaks and the ensuing "whoopee cushion" noises. I got very little sleep that first week, and came onto this forum for some answers and support. You have come to the right place for both. When I started reading the threads, I kept reading about mask liners. "Mask Liners?" I thought. I hadn't known about them, but a google search turned up several that you can order online. The RemZzzzs brand was also available at my DME and I purchased some the same day. They go on between your face and the mask cushion and help prevent leaks. I do still have some leaks, but what made me happiest is that I didn't hear the leaks anymore. That was a game changer, my first night with the liner was the first night I was able to: 1) sleep through the night and 2) leave the mask on all night! The liners don't fix all leaks, and by design the valves are there, as Sheriff has mentioned above, to eliminate the CO2.

Karen at Pad-A-Cheeks is in the process of perfecting an anti-leak strap for my mask, which is relatively new with a different valve configuration, and I hope to get one to see if that makes my leaks better. I still have some nights when I wake up to find that I have taken the mask off and don't know when or why I did that. I chalk it up to some bothersome leaking, but when it does happen I just put it back on and go back to sleep. Most nights since getting the liners I have had AHI of 5 or less, even some that are less than 1... prior to the liners it was usually 7 or 8.

Good luck! Stick with it, try other masks, follow the ideas others here have given you, and in time you will be successful!

[apw5746]

Thanks for the replies!

I'm in North Alabama.

A big welcome to you. My mom was from Gadsden/Boaz area, so a great big Roll Tide to you. Sorry if your yell is War Eagle, but I like to was my all my birds in Tide

Also, sorry to hear you're at your wits end. I've had complex sleep apnea almost all my life, and went almost 12 years not using my machine. Unfortunately I use a nasal pillows system as I'm too claustrophobic to use a FFM which you seem to tolerate, with some exceptions.

There are plenty of people on this forum that can help you much better than I can. Hang in there. Without the rope I might add,.

[Captain_Midnight]

Werewolf, you make some points and ask some questions that many newly treated patients make and ask.

First, yes those vents are needed. You want a constant airflow. It's all calibrated to your prescribed pressures.

Second, the noise. At first, I did not like the noise, it seemed like the noise a ventilator might make. However, it did not take me very long (a few weeks, maybe) before I found that I not only became accustomed to the sound, but I actually found myself liking it. The air "noise" seemed to somehow transform from the air blasts that you might hear at Goodyear tires all the way to the comforting sounds of waves lapping at the beach. I had no idea that this would happen, it just did.

Third, and to amplify the previous item, a few years back someone on this forum (I forget who) posted that he paid for a new, and quieter xpap machine in order to not disturb the Missus. Turned out that the Missus had become so used to the sounds, and eventually found them to be soothing, that she insisted that the new (quiet) machine be replaced by the louder and older one.

The sounds of waves lapping at the beach? This might just happen to you before you know it.

Good luck, Capt Midnight (fellow scientist)

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