New member questions

Hello,
I have been lurking around this site since I finally found out that I have severe OSA in April. I finally have my cpap machine and have been using it for 27 days.

I am having quite a bit of trouble adjusting to the mask and am not feeling better. After a week of cpap I was given a smaller size pillow, which felt great the first night. I just can't seem to get the pillow to feel like it is sealing properly without tightening the headgear so much that my lip hurts. Last night was one of many that I had to keep getting up and readjusting everything.

When and if I finally get to sleep, I wake to discover the mask off and machine off--every night I have managed to actually fall asleep. I don't remember taking it off and can't seem to will myself not to. I can vaguely remember waking sometimes momentarily and being to groggy to decide to put it back on.

I became so frustrated that last week, I decided that I will put the mask back on for a while when I wake no matter what, even if I am not planning to go back to sleep. I have managed to will myself to put it back on, so hopefully I will start doing so automatically in the night.

I have been finding a lot of useful information on this website and some very much needed--humor. When it feels like I have been in a torture chamber every night, with no one I know ever having gone through this or getting how hard it is--things seem way too serious...

I am sure I will have many more questions in the future, but for now:

1. I would appreciate suggestions for making the mask feel more comfortable?

2. I am still having a fair number of events, but the numbers seem to be lower on nights that I lay awake for hours. Does anyone know how accurate the efficacy results are? If I use the machine for 5 hours but am only asleep for 2, does that skew the results or is the machine programmed to recognize that I am not asleep?
3. This feels like a stupid question, but I don't care, I just want to finally start feeling better...I read somewhere that people use nasal gel to help achieve better seal. Because of my rhinitis, I have been using nasal gel for a long time--inside my nose. It sounded like some people use it on the outside?

Thanks in advance,
R

Rebecca R wrote: ........
2. I am still having a fair number of events, but the numbers seem to be lower on nights that I lay awake for hours. Does anyone know how accurate the efficacy results are? If I use the machine for 5 hours but am only asleep for 2, does that skew the results or is the machine programmed to recognize that I am not asleep?
............

Welcome cutey.

The best thing for this question is to buy a card reader and the software. You can then see at what time of night the events are happening. The graphs give you very valuable information.

The machine does not know whether you are awake or asleep.

Do you have any dry mouth at night?

Rebecca R wrote:I am still having a fair number of events, but the numbers seem to be lower on nights that I lay awake for hours. Does anyone know how accurate the efficacy results are? If I use the machine for 5 hours but am only asleep for 2, does that skew the results or is the machine programmed to recognize that I am not asleep?

Your question made me think of "Santa Claus is Coming to Town." He knows when you've been sleeping, he knows when you're awake ...

I wondered the same thing, but I am sure now that unlike the fancy machines at the sleep lab, the S8 Elite II doesn't know. I have the same machine. Rooster's suggestion is a good one. After I got the data card reader and ResScan software, I found that it was scoring apnea events when I am absolutely sure I was awake. I take five minutes to ramp to full pressure. Sometimes my mask starts leaking right when when I get there. When the leak starts, I tend to hold my breath while I listen and feel for the leak's location. That's not altogether logical, but people often hold their breaths as they listen attentively or try to do something delicate, like threading a needle. Sometimes this happens more than once before I feel like I have the mask seated correctly. In any event, these show up in my AI, so the blower either doesn't know I'm still awake or doesn't care.

Hello & Welcome, Rebecca R! Glad you found this forum—SO much useful info and everyone here is so willing to help!

You're lucky to have found this forum as you begin CPAP—took me almost year before I found this place and, with the help of folks here, got my CPAP therapy working as it should. It does take time to get everything tweaked and working at its best, so patience is key as one begins CPAP.

"You are getting sleepy . . ."

Nasal gel (Ayr) used on the outer edge of the nose (nares)will help the nares be less sore until you get used to the mask. I've been doing this for years and still use Ayr gel depending on the mask I'm using at the time.

Some have taped the mask to the face. This way you are more likely to wake when the tape pulls as you remove the mask. You can also wear the mask during the day< with the machine on. Read, watch TV or listen to the radio while you wear it. This will help you adjust quicker. At bed time tell yourself that you MUST keep the mask on all night. Do this several times before falling asleep.

Brenda

Rebecca,

Here's what I do to help the Swift pillows seal better: At your local drugstore, pickup some lanolin (yes, the nipple cream) and rub that on your nose where the pillows make contact. In addition, you might try using the Breathe Right strips to open up your nostrils a bit and return to the medium size pillow. Apply it a little lower than the directions state and see if that helps with a better seal.

Good luck!

I have to say that I'm not sure why it's that important to work with that mask (apart from finances, obviously) because many people don't necessarily do well with any given mask, and it's more important to find one that works for you, not one you dislike or have to jump through hoops to wear. There are an awful lot of masks to choose from, many of which are 'full face' ones (not face-covering, just extended nasal ones, and those cover your mouth). The reason for them is because so many of us, once we're on Cpap with air being pushed into our systems, find that we sleep with our mouths open, and lose all the Cpap air that way, but if you have a full face mask, you can have your mouth open - not that you'd be aware of it when sleeping - and get the benefit of therapy. Try to get your dealer to let you try on a variety of masks - the more popular full face ones are the UltraMirage (which I use), the Quattro, Liberty or Hybrid, but there are still loads of nasal ones as well, and you don't have to suffer with a (noisy!) Swift if you don't want to.

Thanks for all the replies. It is great to hear from some people who actually understand this experience!

Rooster: Ah, so I see you saw my photo. You should see me when I am really tired. I put that photo in a family album and have convinced my grandson that it is an ancestor and his children will look just like that because it skips a few generations. I told my other grandson that I was engaged to both Spider man and Buzz Lightyear and couldn't decide which one to marry, so I didn't marry either of them. And, yes... as a matter of fact I am sleep deprived.

I am going to order the software as soon as I can. I just wish I had read some of the posts about ResMed not selling the software before I bought mine, or I would have chosen another brand. I don't have a dry mouth, in fact since I started the cpap--this is gross --the opposite. I never drooled before! I am now actually waking up and finding I have--in my sleep--taken a kleenex and am holding to my lips so I won't open my mouth or get wet. Unfortunately I also have lifted the pillow up to get the kleenex under. Since I have started CPAP a lot of weird stuff that never happened before has been happening! Will I have any dignity left at the end of this? I am just counting my lucky stars that I am not getting the bloating with air symptom.

PST: I took my data card back to the dealer after a week, and she showed me a graph from the night before with a series of "hypopneas" during the second 30 minute ramp. I told her that I was awake at that time and she said I couldn't have been awake since I wouldn't have hypopneas while awake and said I was probably dozing for a second each time. That could be true--I was sleepy that night, so I didn't argue with her. I though maybe there is a specific pattern of breathing that changes or something that the machine may recognize. So I wonder if the machine counts a yawn or a cough as an event. I am going to put the mask on tomorrow after it clears the data from tonight, and start yawning and holding my breath and coughing to find out what it does register.

Since the machine is not programed to distinguish waking breathing patterns, then my AHI is actually much higher than the report. The highest night since I discovered the clinical menu was 33 AHI with mostly hypopneas, but I was awake for almost half the time, and I have no idea how long I had taken the mask off for, so missing data. I am getting the impression that these dealers seem to think their home sleep studies are equal to the sleep lab. I don't know how you can only ramp for 5 minutes, I have to restart it many times some nights. I actually found with the first pillow, the higher the pressure, the better the seal.

RipVW: I looked at some other forums and this one seemed the best. Many knowledgeable people and everyone willing to share. I do know it takes time... The only other person I know of with OSA, and I don't know her, she is a friend's daughter, started feeling better right away and had no trouble getting used to the mask. Which is the reason I stopped lurking and registered and posted a message.

BDP522: I am going to try the gel on outer edge of nose tonight. I don't recognize the brand you mentioned. The only two that come to mind are Rhinaris and Secaris. It seems like I have to do everything exactly right before I put on the mask or I can't get comfortable. I need to use steroid spray quite a while before I try to wear the mask. I am seriously considering tape or something soon. I have told myself I must wear the mask, but my sleeping self just doesn't listen. I have managed to talk myself into putting it back on in the middle of the night instead of just rolling over and going back to sleep.

5mdintx: Unfortunately, I am allergic to wool and lanolin on and especially in my nose would likely be much worse for my breathing than apneas. If the gel doesn't work, there may be something similar, but not lanolin I can find. I have never tried those breathe right strips. Unfortunately it took a long time for me to get a diagnosis, I don't snore--or at least not much. The sleep study report said very rare light snoring. Because I have other sleep disorders, I don't actually have the typical symptoms. Unless I have not slept for two or three days, which happens on a regular basis, I would score between 0 and 2 on an Epworth at any given time. On my first level one study, my PLMD, spontaneous arousals and sleep latency were so bad, that my AHI only registered mild apnea. So the doctor never suspected OSA and kept trying to change my meds because I still felt so lousy. He never referred me for another sleep study for a year and a half when nothing worked. I will buy the strips and try them next time I go to the store.

Julie: I had to have two titration studies and the first one they tried the Mirage I think Activa on me and I couldn't tolerate it for more than two hours. It kept leaking under my eyes and making loud, disgusting noises(I suppose the technician thought that was me). I felt like I was suffocating and it hurt the bridge of my nose so bad that I asked them to find me a full face mask. I used either the Ultra Mirage or Quattro for the rest of the night. It was much better, but it also hurt my nose. When they were taking the wires off me, they showed me a mirror and I had big red marks. I also never slept enough to get a prescription and had to go back. The doctor wasn't happy that they didn't find a better mask or fit. He ordered a nasal pillow for the next titration and aside from pulling up on my nose, it was the best one. I took sleeping pills and actually slept all night with the mask--well all night for me. Incidentally I took the mask off in my sleep that night and the technician calmly came in and put it back on me without a word. Too bad I can't afford to hire a pulmonary therapist/sleep technician to watch me and put it back on Maybe if the ENT decides to fix my deviated septum, my nose will not be so sensitive.

My doctor specifically put nasal pillow mask on the RX, so that is what my health care would pay for. They only pay for one a year, but I may have to buy myself another. The price was only 50.00 more for the Quattro than the swift. If I can't resolve these issues, I will buy a different one. I have always had such trouble sleeping that I think I am oversensitive to everything while I am trying to sleep. I actually only find the Swift loud when there is a leak or when I have some swelling in the crooked and smaller nasal passage. When that happens, my nose kind of whistles, not the mask.

I have to end this with a positive: My blinding morning headaches have improved. Not gone, but the pain level is significantly lower if I get in more than two hours actually wearing the mask. I think a higher heat on the humidifier helps, but the loud noise and water all over is annoying when I turn it up any higher.

Yes, many new experiences, drooling, whistling nose, what's next.....

Thank you all for the warm welcome and advice, I have to be getting back to the... rack... I mean...go to bed and put my mask on before someone finds out I am not wearing it...did I hear something about "cpap police"?

r

Hi, you are having a lousy time, but as a last resort here, what about trying on a different size of something like the UM FF? They quite possibly fitted you wrongly the one time you did try it. To be honest, I will wake up on occasion with the odd red line, etc., but that's usually because I sleep on my front, with my face pressed into the mattress to some extent and that would cause an "impression" on anyone, but it's otherwise not uncomfortable at all, though I did have to try a couple of sizes to get the right one at first (never mind how many different masks altogether).

Rebecca, you might investigate the Hybrid mask. It's got nasal pillows and a mouth cushion so it's classed as a full face mask (FFM) but most of us refer to it and the similar Liberty mask as hybrid-style masks. The Hybrid comes with 3 sizes of pillows and 3 sizes of mouth cushions making it easy to get the right fit while the Liberty must be ordered in one of its 2 sizes. The Hybrid has fewer parts to wash. Nothing on the forehead. Strap marks are greatly reduced by padding: PADACHEEKS.com or make your own with microfleece (I used a folded 3-layer Kleenex with tape with my former pillow mask).

Oh yeah, ResMed machines are the quietest on the market and provide the most data on the LED screen...ya just can't buy the software in the US.

PST wrote: Your question made me think of "Santa Claus is Coming to Town." He knows when you've been sleeping, he knows when you're awake ...

The new F&P HC254 APAP claims to do just that, and lower the pressure when you are awake.

://www.fphcare.com/osa/cpapauto.asp

Rebecca R wrote: .......
Rooster: Ah, so I see you saw my photo. You should see me when I am really tired. I put that photo in a family album and have convinced my grandson that it is an ancestor and his children will look just like that because it skips a few generations. I told my other grandson that I was engaged to both Spider man and Buzz Lightyear and couldn't decide which one to marry, so I didn't marry either of them. .....

To each his own, but you look quite attractive to me.

jdm2857 wrote:

PST wrote: Your question made me think of "Santa Claus is Coming to Town." He knows when you've been sleeping, he knows when you're awake ...

The new F&P HC254 APAP claims to do just that, and lower the pressure when you are awake.

://www.fphcare.com/osa/cpapauto.asp

That's a cool feature - might be very helpful to many patients especially newbies.

I have the very basic F&P HC234. This is just a straight CPAP with integrated humidifier and no data capability. I use it when I travel.

It is an excellent unit, extremely quiet, compact and the integrated humidifier is exellent. I am very impressed with it.

The 254 you mention is based on the same platform and humidifier. When the unit was released, as far as I remebmer there was hardly a ripple of discussion in the forum. Anyone have a link to the discussion? I wonder why the unit is not more popular in this forum?

I think that some people shy away from the HC254 because it does not have some form of exhalation pressure relief.

Muse-Inc wrote:Rebecca, you might investigate the Hybrid mask. It's got nasal pillows and a mouth cushion so it's classed as a full face mask (FFM) but most of us refer to it and the similar Liberty mask as hybrid-style masks. The Hybrid comes with 3 sizes of pillows and 3 sizes of mouth cushions making it easy to get the right fit while the Liberty must be ordered in one of its 2 sizes. The Hybrid has fewer parts to wash. Nothing on the forehead. Strap marks are greatly reduced by padding: PADACHEEKS.com or make your own with microfleece (I used a folded 3-layer Kleenex with tape with my former pillow mask).

I left a message for my dealer to call me. I am going to have a list of masks I want to try when I see her. Luckily I haven't had any trouble with strap marks. I have quite a few allergies, and am always happy when I don't have a reaction. I hope I can remember which tapes I am allergic to before I try any taping. Years ago I had surgery and they taped me up with a giant elastoplast looking bandage--what an ugly itchy mess I was. There was one tape that claimed to be hypoallergenic that I was really allergic to. I will try strips of tape on my arm to test first.

Muse-Inc wrote: Oh yeah, ResMed machines are the quietest on the market and provide the most data on the LED screen...ya just can't buy the software in the US.

I know, it is quiet! I went and told my grandsons that I was going to have a Darth Vader machine next time they visit and my now my credibility is at risk. Oh well, at least their other grandmas don't have anything near as cool as a breathing machine. A Darth Vader breathing machine would have impressed them a lot more. I showed them the ResMed pictures/literature/propaganda last time they visited (while I was waiting for all the red tape to go through) and they were really curious and intrigued with the idea of the new breathing machine that was coming. They kept looking at the photos, and asking questions--good questions actually--and they even gave it a name: "Bluebell." I could think of some names for it right now, but not nearly as endearing as Bluebell.

I found out after I got the machine, from reading this forum that I can't buy the software. It sounds like ResMed stopped shipping anything to Canada.

jdm2857 wrote:
The new F&P HC254 APAP claims to do just that, and lower the pressure when you are awake.

://www.fphcare.com/osa/cpapauto.asp

I am not familiar with that brand, but I will look at the website. I am stuck with the machine I have for now, but when it comes time for a new one I will have done a lot more homework.

jdm2857 wrote:I think that some people shy away from the HC254 because it does not have some form of exhalation pressure relief.

I have seen references to exhalation pressure relief, but was not told about it when I got the machine. The users manual for my TV remote gives more information than my Cpap manual. When do you use this pressure relief and does anyone know if my machine has it?

rooster wrote: To each his own, but you look quite attractive to me.

Wow! That is a truly great photo. Can I use it for my photo album?? Umm...I hope this doesn't sound rude, but how many masks do you have to use? Even though I am a cpap neophyte, it would seem to me only logical, that with more eyes and mouths than noses, that you would have real problems with mouth breathing and leaks.