new to this and scared...

[skicheer12]

recently found out I have sleep apnea (and from this board - I am glad I am not alone). I now have a CPAP and get very freaked out by it at night (have only had it for a week).

1) is this normal?
2) does anyone sell pads for the Full Face mask forhead area?

I sleep mainly on my stomach with my head turned to one side. I am fine for when I just start to fall asleep, then a couple of hours later I feel very confined and apparenly pull the mask off and shut off the machine (not that I remember doing this), but I wake up in the morning and the machine is off and the mask is on my night table.

I am really glad there is a forum for this.

Drew

[Bonnie]

No Drew, you are not alone, we have all experienced various problems from mild to severe. By coming to this forum and asking questions you will find many people willing to help. And yes, most of us have had that experience of waking up with the mask off in our hand or on the nightstand. Very common. It WILL get better. This is a whole new world you are thrown into. And with something I bet you knew very little about. Now you have to research and learn about things you had no idea even exsisted. Welcome to the world of Hoseheads.....

I was not able to tolerate the mask during the sleep study so my doc got me a machine set it a 7 and had me get use to it at my own pace at home. What I did was sleep in a recliner , with all the lights and the TV on. I'd sleep for an hour wake up, take it off, sleep, try again, etc. After my first time sleeping for 4 hours straight and feeling like a whole new person the next day I knew I was on my way. Finding the right mask is the key to this treatment process. Having a full face mask can be very scary and some people will not do well with it at all. Is your machine rented? Most insurance companies request it be rented to make sure you use it before they purchase. If it is the mask that is bothering you, ask about getting a different type, perhaps a nasal pillow system that is less confining until you get use to this whole new experience you are going through.

Another suggestion I have it that you take control of your situation from the start. You will learn a lot by reading previous posts here regarding sleep doctors and DMEs, on line purchases and then applying that knowledge to your situation. You know yourself better than anyone.

Do a search for the pads, there is a person here, Karen, who has a business called Pad-A-Cheek, making comfortable pads for masks, they really do help.

[fujiinator]

Hello,
I am actually testing a pad for the Mirage that Karen is having people try out. It definately makes it more comfortable.

I have ended my fifth week. Keep at it and it will get better. Also ask questions here no matter what they are and take advantage of those here that have been at this awhile.

[Wulfman]

skicheer12/Drew,

Welcome to the forum.

Try loosening up the straps a bit (especially the top ones)......sounds like they might be a little too tight. That mask works well for me and quite a few others on this forum. I have mine adjusted so that the forehead pads just barely touch my forehead and most of the tension is on the bottom straps. Also, I have my forehead pad set in the vertical position....no angle.

Also, what pressure is your machine set at?

Best wishes,

Den

[skicheer12]

Thank you for quick replies. I feel a lot better knowing ya'll are out there and are either going through or have already went through this.

The cpap is set at 9 and I have the humidity level set to one below the highest setting. the tech had it set to ramp for 20 minutes and after a couple of days I changed it to no ramp. seems better in the beginning of the night when I have it full strenghth.

I may try wearing it for a little while when awake watching tv to see if that helps (saw that idea on another post).

If I loosen the top straps, i get some leaks (which I am guessing there should not be). Hard to get the proper fit...

I will not give up on this. from all the information I have heard and read, it should get better. I went through all this trouble to find out about sleep apnea and cpap, now its time to control it.

[Wulfman]

If I loosen the top straps, i get some leaks (which I am guessing there should not be). Hard to get the proper fit...

Well, I didn't mean completely loose.....just back off of the tension a bit. The rubber seal around the mask is designed to expand with the air pressure and seal to your facial contours. A pressure of 9 isn't all that high. Yes, it does take some tweaking to get the right fit.....but a pretty good sleep once you get it adjusted. Hopefully you've got the right size.

Den

[Rich]

I never realized it would take me so long to really get used to CPAP and the full face mask. Nevertheless, after two months I've finally adjusted and I don't pull the mask off any longer (thanks to friends here who warned me against it).

I hate to sound like a broken record, but I'm experiencing so many positive benefits that it's wonderful. Keep with it, night after night and week after week and you will get there.

Your life will change for the better.

Rich

[puffing billy]

Dont fight it, I am on week 6 and still sorting out little problems.
My pressure is 17 for half the night (on an auto).
It does get better.

Billy

[datasmom]

I'm new to using cpap, too. I've been using the machine and a full face mask for just over two weeks. When I do finally fall asleep with it, I usually get a few good hours of sleep and I do feel more rested but I don't go to sleep every night, or not until really, really late/early morning. This is causing a real problem as I have to work and I'm new on my job.

I'll sleep okay for one night and not be able to go to sleep the next, one night of sleeping at least a couple of hours and then the next, maybe one or two hours. I try to sleep without the mask, with it, nothing works.

I'll be super sleepy, just exhausted and then when I lay down I start to worry about the mask leaking or not being tight enough or being too tight. Next thing I know I'm wide awake. and just laying there listening to myself breathe.

The only thing I can think of is that the mask has caused quite a few problems and I'm fighting it on several levels. First I had a bad allergic reaction to it, everywhere it touched left swollen blotches. The sleep ctr said they'd never heard of that happening, the med supply store said they hadn't either. Their only solution was to use the nose mask that has the canulas as they said it would have less skin contact. I finally did a search online and saw that I wasn't alone, others had reacted the same way to new masks, something about the chemicals. I soaked the mask for several hours and rinsed it well and that helped.
The nose canulas were an exercise in torture thought. I have allergies and half the time I can't breath through my nose plus I hate the idea of having anything up my nose, it reminds me of snorkeling, something I never have enjoyed. I tried it but ended up throwing the durn thing across the room during the night.

Long story short, I think I've, subconsciously at least, struggled too hard to make it work. The sleep tests were expensive and the set up was as well and I guess I'm worried I will never get used to the mask and will have wasted all this money.

I traded the nose canula thing for a respironics gel mask that just goes over the nose. I like that a lot better if I could just figure out how to unstop my nose and keep my mouth shut... the chin strap they gave is next to useless.

Sigh.... can I overcome all this and get not just one but night after night of good rest???? (Sounds like a melodrama... but I'm tired, no sleep at all last night.)
Anyways... I'm sure glad to find this place and read that I'm not alone.

[roster]

datasmom said: First I had a bad allergic reaction to it, everywhere it touched left swollen blotches.The sleep ctr said they'd never heard of that happening, the med supply store said they hadn't either.

They are either deaf or lying and in either case they are idiots. Bad reactions on the skin are common.

datasmom said: I have allergies and half the time I can't breath through my nose

You need to be proactive about getting relief for the allergies. There are a lot of good treatments for allergies. See your general practitioner or an allergy specialist.

Keep posting your story and progress or lack of progress as a New Topic on this forum and you will get a lot of advice. Don't give up. My first 3.5 months were bad and then I got the bugs worked out. By the 4th month I finally started to make good progress.

[Guest]

My impression of the supply place was not so good. They seemed really nice up front and then they were not so eager to help when it turned into work. I'm going to be thinking twice about buying anything else there. . I think when I called the next day after getting the cpap machine, mask, etc and told them my face was covered in hives they thought, "Hmmmm, high maintenance."
As for my doctor's office, I think it's more a case of lack of communication. The Sleep Doctor is pretty good but the office is set up a little strange.... it's almost like he has no contact with the staff, I never did get to talk to him about the hives.
I see him June 5, I'll talk to him then. He did insist that I wear a chin strap and work at keeping my mouth closed even with a full face mask. Does anyone know why?

Has anyone used or know of anyone who has used the mouth only mask? Haven't done too well with allergy medicines in the past but I haven't really worked at it, too many other medical issues out ranking them. I would like to use the nose mask I have now though. I did a trade with a woman at work, she's been on cpap for a year and loves it. She uses the canulas and says they work great for her. She had a brand new nasal mask, the one with the comfort gel and I sure would like to be able to wear it, it feels so light after the ff mask.

Thanks to all for the reassurance. I'm sure I'm going to get there but don't ask me that when I'm tossing and turning at 1...2... 3 am! Ha.

I tell you one thing... I've learned more in these posts than I ever would have gotten at the supply store.

Lorrie

[Sleepy-in-AL]

Have you tried backing down on the heat on the humidifier? I am new to treatment also, but I seem to do better with the humidifier set on 1 on my Remstar HH.

I'm not sure about the mouth breathing with the f/f mask. I was prescribed a f/f mask because I mouth breathe. I do know that when I breathe through my mouth for an extended period of time it will dry out my mouth, not as much since I got the HH, but still noticeably. I'm going to try a chin strap to see what happens.

[Baxter-ZZ]

Drew -

You sound like me when I started. Before getting on cpap I slept on my stomach and often with my mouth open. My initial tests were with a full face mask and I could not tolerate it.

I tried the Mirage Swift Nasal pillow mask, which was much less claustrophobic to me. To wear this mask I started sleeping on my back, and was surprised that I was able to change my sleep position after 35 plus years. I also found that I do not open my mouth when the air is flowing at night - - I guess I don't have to breath through my mouth any longer.

I also found that a machine with C-flex was key to my success, because I am no longer fighting against the air pressure to exhale. When I had to fight to exhale, it gave me a feeling like I could not breath.

Bottom line is that I went from removing the mask every night while I was asleep to being able to wear the mask all night 90% of the time.

One tip I took away from this board, when I was about to give up before I even struly got started, wasn to focus on getting the correct mask for me. You might want to try experimenting with different masks.

Stick with it.

[Guest]

datasmom:

If it's really that you're only getting an hour or two of sleep every nite with the machine because you're fighting it, i would ask your doc to prescribe a small amount of a short-acting benzodiazopan for sleep. i would not give up on the cpap but you may need something to temporarily make you feel less self-conscious.

Caroline

[rested gal]

Lorrie, it's perfectly all right to breathe through your mouth when wearing a full face mask. To be sure we're talking about the same mask when we say "full face", that's a mask that covers your nose AND your mouth. Doesn't cover just the nose, and doesn't cover the entire face. Covers nose and mouth together.

While it's fine to breathe through your mouth with the FF mask, mouth breathing in a FF mask can make the mouth very dry -- even with a heated humidifier going, just as Sleepy-in-AL said:

I do know that when I breathe through my mouth for an extended period of time it will dry out my mouth, not as much since I got the HH, but still noticeably.

The doctor may have been trying to get you into the habit of breathing through your nose, which would be a good thing. But at any rate, the air you need to keep the throat open is going to get there, whether you're breathing through your nose or through your mouth, with the full face mask on.