I have a mild condition compared to some although they say I do need it, however the powers that be appear to be conspiring against me.
Started a wonderful sleep pattern of making it an hour to 2 hours max then waking up with my 2nd full face mask, which replaced the original one that left my eyes a mess after blowing air across them all night long.
The 2nd masks issues appear to be leakage issues. I can't adjust it where it won't leak when I relax my jaw--the machine even fails the leak test. I am certain I am waking up when that happens. I don't get back to sleep easily and had just been taking it off so i could get some sleep--which nights I actually get some sleep vary from night to night.
I finally was able to get in to the DME provider only to find they keep bankers hours and were closed by mid afternoon.
So a few days later I try again, mention my latest mask issue, ask for one that is likely to fit better without the problems I had and am handed one that actually looks decent--a WISP model.
I did not notice the air vent location until I got home. One the hose. Likely sending air right across the eyes in one position. DME was told I had a problem with that.
But that wasn't all of it--hose on the new mask it won't fit the hose I have for the machine. There has to be some connector they neglected to give me, though they know what hose I have as they sold it to me in the first place. And to think I asked "shouldn't we hook it up to a machine to make sure everything is OK to avoid me bringing back a 3rd mask that doesn't work?" the answer to which of course was no. They don't have a machine there for that!
Supposed to go see the sleep doc tomorrow. Not sure I will, they don't have anything positive to evaluate!
I'll give it another hour to see if i can wind down, otherwise it will probably be drugs and booze again. Haven't slept well in several nights now.
Sorry to hear you are having such a hard time of it, but in reality you are not alone. Not every one has a problem, but a lot do. Everything I heard about your expectations is very reasonable, but again I am not surprised. You will get a lot of "yep me too" around here and some suggestions on what you can do about it. Quite a few have problems with air blowing over their eyes (I would also, but I have not had that problem).
This stuff does work and it seems that finding the right mask is one of the biggest issues.
Not much to do this late at night, but stand by for some input coming your way.
On the positive side: you have a good machine that is data capable and has lots of settings to adjust (comfort not therapy settings). At first glance your low pressure seems too low. Do you ever feel like you are not getting enough air?
It sounds like you are going to have to go the route that most/many of us do: take control of your own therapy. If you need to bring your own hose to check things out, maybe even your machine to try it out with.
Take heart, you are not alone, and most of us make it work and it does indeed work.
The hoses are different slim, regular, heated, but the connections are standard. You should have gotten an adapter and it should have been in the seal bag from the manufacturer. Was your bag open? or did they just hand you the new mask? Now it could be that they just dropped the connector or left it in the bag, but you could also have gotten a used mask. Ask to pick up your part still factory sealed.
Oh and download and install sleephead free software and make sure you have an SD card reader, it will help ease your path a lot. Links at the top of the page
04-27-2016, 01:39 AM
(This post was last modified: 04-27-2016, 01:41 AM by dawoodsman.)
Brand new mask, had to rip the seal. The bag just had a short piece of hose connection--the vents are on that short hose, by the mask. I have a long heated hose for the machine. The hose from the mask and the hose from the machine do not fit together. Two female parts, no male on either end and neither end has anything that comes apart--and the can't be bent or squeazed to fit together (I tried). The short hose from the bag for the mask has to be used, it has the vent for the mask on it. And the hose from the machine doesn't connect to the mask directly (tried that too). I didn't try connecting the short hose from the mask bag directly to the machine. But if that's the way it's supposed to work the heated hose isn't being used--and my face has be less than a foot from the machine all night long!
(04-27-2016, 01:14 AM)PoolQ Wrote: Oh and download and install sleephead free software and make sure you have an SD card reader, it will help ease your path a lot. Links at the top of the page
I had planned to do that but figure it's not worth it sleeping only an hour or two at most a night with the masks I have had.
Hang in there. Try a P10 nasal pillow mask, if you haven't already. Everything I've used except the P10 would eventually wind up blowing air into my eyes at some point. Hurts like a SOB.
Try to make your doctors appointment tomorrow. Just lay it out to your doc. Tell him/her you want to make it work, but you need some help.
CPAP is doable, but it's mostly a long process of experimentation and elimination. I've been on cpap for 15 years and I still have a rough night every once in a while. But it's still worth the effort and I am thankful for an alternative to suffering with SA.
My throat is giving me a fit right now and that's why I'm still awake. Gonna take a Xanax and gargle with salt water.
Stay in touch and good luck.
Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
04-27-2016, 02:06 AM
(This post was last modified: 04-27-2016, 02:07 AM by Carbon.)
(04-27-2016, 01:39 AM)dawoodsman Wrote: Brand new mask, had to rip the seal. The bag just had a short piece of hose connection--the vents are on that short hose, by the mask. I have a long heated hose for the machine. The hose from the mask and the hose from the machine do not fit together. Two female parts, no male on either end and neither end has anything that comes apart--and the can't be bent or squeazed to fit together (I tried). The short hose from the bag for the mask has to be used, it has the vent for the mask on it. And the hose from the machine doesn't connect to the mask directly (tried that too). I didn't try connecting the short hose from the mask bag directly to the machine. But if that's the way it's supposed to work the heated hose isn't being used--and my face has be less than a foot from the machine all night long!
It sounds like there is a short male/male connector you are missing - it usually is pretty firmly stuck in the hose but can come out. Maybe it ended up in the hose of in the mask you returned? Duct tape might join the hoses good enough for tonight.
I have a Wisp mask. The hose from my CPAP machine fits directly over the end of the short hose that attaches to the front of the Wisp mask.
The Wisp was the second mask that I tried. The first one included a clear, hard plastic insert that fit into the end of the long hose. The respiratory therapist at the DME put it there and didn't mention it to me, and I didn't register that it was there.
When I first got the Wisp and tried to connect it to the long tubing, it wouldn't fit. Not saying this is the problem with yours - I have a standard vanilla, unheated hose. I finally realized that the hard plastic connector in the long hose needed to be removed (the light in my bedroom isn't good, plus I need a new bifocal prescription, so it took a while before I even saw it.)
Oh, I also wanted to say that I really like the Wisp's air vent. It vents straight out away from your face. It looks like the air would vent up toward your eyes, but it doesn't. I have autoimmune dry eye, and my eyes are extremely sensitive to having any air blowing at them, so that was a big "must" for me in a mask.
I am planning to try a nasal pillows mask the next time I get one, but I like the Wisp pretty well. It does not need to be tight at all. I put my mask on while I'm standing up - it's loose and doesn't seal at all. I then turn on the air and hit my 5-minute ramp and lie down. I usually have to pull the nasal cushion out from my face and then gently reseat it. The air pressure causes the seal. After I got the headgear adjusted, I just slip it on and off without undoing the velcro on the sides. (I have a feeling that's not good for the life of the headgear, but it's very convenient.)
It's easier for me to put on the headgear without the short tubing attached to the front of the mask.
The nasal cushion felt a little uncomfortable on my lip and upper teeth for the first 3 nights or so that I used it. I think I just had to get used to sleeping with something touching there. I think the cushion also softens and sort of "rolls" in that area after 2-3 nights of use. I use the large size cushion, and I remember that I had to keep adjusting it up or down the first couple of nights that I used it.
If you're a side sleeper, you'll need to sort of scrunch up your pillow so that the part of your face where the nasal cushion is hangs off your pillow. It took me a few weeks to get used to doing this. At first I seemed to be sleeping mostly on my back, because I'd wake up with lower back pain and feeling really stiff, but now I seem to turn normally in my sleep most nights. (I have quite a bit of arthritis, so I wouldn't say that you should expect this to happen to you necessarily.)
Okay, that's probably way more than you wanted to know about sleeping with the Wisp. I hope that some of it is helpful.
I'm sorry you are having such a rough time with your CPAP therapy.
I know it seems pointless to you to go to your sleep doc, but you might keep the apppointment to tell them what is going on and what a rough time you are having.
I wish you good luck and don't give up.
Hope you cannot plug a mask directly into the machine, not recommended even if you could. Looking at your data is always useful, it's the best way to knw what the heck is going on while your asleep. Even if it's only for an hour. Follow the instructions, read the card and post it here, give someone a chance to help out.
Knowing which mask you have would help, I am sure someone else here uses the same one.
We have members that used to wake up in the morning with the mask sitting on the floor across the room and having no idea how it got there.
I would recommend changing DME if you can.
When I went in to get my mask fitted, they took the machine out, showed me everything about how to use it, how to clean it, and everything else. Then we tried on multiple masks to see what one fit correctly, and they even had a bed I could lay on and check how it felt on my side. If your DME won't even let you try on a mask before you take it home, you absolutely must switch to another one.
You should try different type of masks that might be more comfortable. A nasal mask/pillow is much more comfortable and harder to accidentally push to create a leak then a full mask. If you can sleep without opening your mouth, you should be better off using one of those, or get a chin strap and try it.
Importantly too is to talk to your doctor about it and get him to help you. Ask for a 30 day script of ambien to help you fall asleep until you get used to the mask. Ask him for a new DME if they can't even test the mask before sending you home for it. Ask for nasal spay if your nose is congested. The important thing is to get things done correctly first time around, so you don't have to struggle to get a good mask.