So now I know what a bad night is like

Jefe · Post by **Jefe** » Mon May 21, 2007 9:01 am

I was miserable last night. I don't remember much, except waking up with my mask leaking several times. I woke up feeling bone dry (with the humidifier on!) and my throat felt like it was burned by stomach acid. I don't have acid reflux, but I have experienced the symptoms, and last night was one of those times.

My fiance didn't even wake me to go on our AM walk, as she said I kept waking her, tossing & turning, and my mask leaking. I've been using my Cpap for about a week and a half now, and still feel no improvement.

I was going to talk to my DME about a new machine, as I have the Respironics M series Plus CFlex (Cflex is turned off). I'm a computer geek, and having the bottom of the line machine rather sucks. The main thing stopping me is my insurance has a $1K a year max for equipment, so any other machine, I'm paying more out of pocket.

I'm using a F&P 432, as the CF2FF makes my teeth bleed, and I didn't like the seal much on the UMFF. I'm seriously thinking of trying a UMFF again, especially as the demo my DME had was a medium, and I'm a large.

I just feel lost in the CPAP wilderness. I'm sticking with it for my health, but does anybody have some advice? I can't spend another night like this. I feel like I slept better before treatment!

Babette · Post by **Babette** » Mon May 21, 2007 9:27 am

Boy, I do know how you feel!!!

I know this won't help, but it was probably just a bad night. You need to keep slogging through it, from what I've read on this board. I'm starting my fifth week, and I've been 100% compliant only a few nights in a row so far.

I'm not feeling AS BAD as I did in weeks 1-3. I'm not feeling great. I'm getting more used to the mask and the machine. I still have 3 am's where I get up, take off the mask, and just sit there, talking myself into putting it back on. It's mainly nose and upper lip discomfort right now.

I'm using Benadryl and either Tylenol or Ibruprofen when I go to sleep right now - the Benadryl to help me sleep, the Tylenol or IB to help with the back and arm pain unrelated to the cpap. Possibly some Benadryl might help keep you a little more down? BTW, I use the ultra cheap generic version, with nothing else in it. Way cheaper than buying "Tylenol PM". Read your ingredients.

I now how hard it is to function when you feel like crap. I got a prescription for Provigil after I harrassed my doctor because I felt so bad. I'm taking 1/2 a pill only. I experimented with no pill at all this weekend and felt about "usual".

Good luck, keep slogging through it, and keep us posted!
Barbara

Jefe · Post by **Jefe** » Mon May 21, 2007 9:39 am

Well. I called my DME.

I was honestly surprised at how easy it was with them. They sympathized, and said it would be no problem. They offered to switch me out today, but I elected to wait until next week for the Quattro. I think I'm going to stick with the machine for a while though. I can get past the blazing lights. The data would be nice -- but I'm more interested in results, and it works. Considering I may pay up to $400 for the M Plus, I can live with it -- especially considering the results.

And Babette -- The Doc put me on 100mg of Trazodone, which would knock down a buffalo at full gallop. I was waking up 2 or 3 times with the Trazodone alone, but with the CPAP, I'm waking up 1 or 2 times. It's a major improvement.

I'm going to remain upbeat. I can do this. I can feel better.

tangents · Post by **tangents** » Mon May 21, 2007 9:43 am

Sorry you're having such a rough time, Jefe. I'm only 2 1/2 months into it myself, and I wonder when I'm going to start feeling GREAT.

If you really need a full face mask, there's another thread going on right now about them, started by Dark_Star. Also, read under the light bulb about mask fixes and comments to try to tweak your mask seal.

One thing I've read over and over here on the board is that if your mask is leaking too much, you will be dry, and your apnea won't be treated. If you need to use your insurance limit to find a good mask, that should be your first priority, IMHO. I just got a data logging machine last week (actually, the bottom of the line is the Respironics DS100 - that's what I had). Before that, I bought (out of pocket) two new masks to try and get a comfortable night's sleep and a good seal.

When does your insurance year roll over? If it's not until next calendar year, maybe you can pick up a used PRO at a good price...
No one said this therapy was cheap

I hope you get some more help from the forum. Keep us posted, and good luck!

Take Care,
Cathy

Snoredog · Post by **Snoredog** » Mon May 21, 2007 9:52 am

If you drink any coffee at all you will have acid reflux, doesn't matter if one wants to admit it or not.

I would suggest getting some PecidComplete antacids and next time that happens try taking one of those, you will get relief in minutes. I've tried a dozen different types including prescription, none work any better then PepcidComplete. I like the Berry flavor.

When I have one of those nights and we all do, I remove the mask set it on the machine turn over on my stomach and sleep away.

Jefe · Post by **Jefe** » Mon May 21, 2007 10:51 am

I haven't had a drop of coffee in maybe 6 months, and maybe 4 oz of diet soda, which was gone before noon, so that wasn't it.

The drying could very well be from the mask leaking, and like I said, I've had enough. The 432 is a good mask, but my chin doesn't fit the chin divot correctly, so it slides all over my face, unless I dog it down tight, which gives me red marks and pain the next day. I'm also tired of having to slip a pad under the forehead, so it will stop digging into my nose so hard that I can't breathe thru it.

I'm good for one mask every 90 days, and I think a CPAP machine every year, or 3 years. I need to check. Either way, my insurance will pay $1k toward the machine per year. I also need to give them the challenge numbers to verify I am using it. If I have used it for 120 hours after 3 months, insurance will buy it. Of course, that $1k limit includes the rental payments, which raises the total.

Guest · Post by **Guest** » Mon May 21, 2007 12:39 pm

If you really need a full face mask, [...]

You make FF masks sound like a last resort, with wording like that. Some people don't NEED them, they simply PREFER them over weirder approaches like chinstraps or taping their mouths shut all night.

Like I've said before, if you have a system with three holes and you want to pressurize it, you can simply cover all three holes and the problem is solved, or you can inexplicably cover only two, then try a bunch of jury-rigged weird workarounds to make up for the fact that the third is free to leak profusely. The former approach makes MUCH more sense, unless you have claustrophobia issues that a FF mask aggravates.

I never did understand the whole "well, if you REALLY NEED one..." attitude when it comes to FF masks. I could just as easily turn it around 180 degrees and state that FF masks should be the standard, and if someone freaked out with claustrophobia wearing them, then I could say, "well, if you REALLY NEED a nasal-only interface..." with the same negative tone of voice. It can work both ways.

You might think I'm nitpicking here, but language and tones used here can dissuade people from trying certain interfaces that might be PERFECT for them, and I'd hate to see that happen.

Wulfman · Post by **Wulfman** » Mon May 21, 2007 1:13 pm

Anonymous wrote:
If you really need a full face mask, [...]
You make FF masks sound like a last resort, with wording like that. Some people don't NEED them, they simply PREFER them over weirder approaches like chinstraps or taping their mouths shut all night.

Like I've said before, if you have a system with three holes and you want to pressurize it, you can simply cover all three holes and the problem is solved, or you can inexplicably cover only two, then try a bunch of jury-rigged weird workarounds to make up for the fact that the third is free to leak profusely. The former approach makes MUCH more sense, unless you have claustrophobia issues that a FF mask aggravates.

I never did understand the whole "well, if you REALLY NEED one..." attitude when it comes to FF masks. I could just as easily turn it around 180 degrees and state that FF masks should be the standard, and if someone freaked out with claustrophobia wearing them, then I could say, "well, if you REALLY NEED a nasal-only interface..." with the same negative tone of voice. It can work both ways.

You might think I'm nitpicking here, but language and tones used here can dissuade people from trying certain interfaces that might be PERFECT for them, and I'd hate to see that happen.

Thanks for your rhetoric. My feelings, EXACTLY!

Den

Jefe · Post by **Jefe** » Mon May 21, 2007 1:25 pm

I agree as well. My DME tried to get me to try nasal masks as well. I said "Thank you, but I tried them at my sleep study, and kept opening my mouth" They said "No problem, a FF is what you'll get"

I breathe through both my nose & mouth, and I really don't feel like strapping my mouth closed. It's bad enough I'm strapping on a baby elephant trunk, I don't need to add more straps!

Babette · Post by **Babette** » Mon May 21, 2007 1:43 pm

My DME started to offer me a FF, but I chose to go nasal interface, because while I AM a mouth breather, I'm also claustrophobic, and a LARGER mask freaked me out.

Maybe I'll try one someday. For now, I don't feel the need. I think people just need to know there are multiple options out there, not just what the DME shoved at them.

Cheers,
B.

Jefe · Post by **Jefe** » Mon May 21, 2007 1:52 pm

Back to the original topic though.....

I just discovered one new thing that makes me very glad I'm getting a different mask. I wake up every night with the mask with puffy eyes, almost glued shut by mucus. Napping with no mask - no puffies. I thought it was a side effect. The collective wisdom light bulb tells me this is a sure sign of leaking.

I feel much better with my decision now. This could very well be the reason, I'm siting here yawning, and suffering from a nasty headache. If I'm not getting my 12cm, I'm probably still having apneas.

Maye I should just pony up for a new machine. I'll talk to my DME when I go for my new fitting.

Guest · Post by **Guest** » Mon May 21, 2007 1:54 pm

Babette wrote:My DME started to offer me a FF, but I chose to go nasal interface, because while I AM a mouth breather, I'm also claustrophobic, and a LARGER mask freaked me out.

Maybe I'll try one someday. For now, I don't feel the need. I think people just need to know there are multiple options out there, not just what the DME shoved at them.

Well-said! Yes, the goal is to make all patients aware of the full range of styles available in interfaces. What I don't like is the prevailing attitude and tone around here that nasal is king, and that full-face is some sort of last resort for those who "fail" with a nasal interface. As I said, it can work the exact opposite way too, so let's be neutral if we can.

And by all means, try one sometime, Babette! I didn't like mine the first night either, but the claustrophobia actually fades to nothing -really- quickly. You might have 1 or 2 difficult nights, then be totally in love forever after. But you'd need to spend the few days to actually find out.

Oh, and Den, you're quite welcome. I know you use a full-face, and figured you might like my comments. Don't you just hate being a second-class CPAP citizen around here? Hehehe.

Wulfman · Post by **Wulfman** » Mon May 21, 2007 2:07 pm

Anonymous wrote:
Babette wrote:My DME started to offer me a FF, but I chose to go nasal interface, because while I AM a mouth breather, I'm also claustrophobic, and a LARGER mask freaked me out.

Maybe I'll try one someday. For now, I don't feel the need. I think people just need to know there are multiple options out there, not just what the DME shoved at them.
Well-said! Yes, the goal is to make all patients aware of the full range of styles available in interfaces. What I don't like is the prevailing attitude and tone around here that nasal is king, and that full-face is some sort of last resort for those who "fail" with a nasal interface. As I said, it can work the exact opposite way too, so let's be neutral if we can.

And by all means, try one sometime, Babette! I didn't like mine the first night either, but the claustrophobia actually fades to nothing -really- quickly. You might have 1 or 2 difficult nights, then be totally in love forever after. But you'd need to spend the few days to actually find out.

Oh, and Den, you're quite welcome. I know you use a full-face, and figured you might like my comments. Don't you just hate being a second-class CPAP citizen around here? Hehehe.

Actually, I never considered myself being "second-class". I DON'T have a drawer/box full of rejects that didn't work for me. Since my FIRST selection worked beautifully, I think that makes me "FIRST class".....

Besides the money I've saved on the other non-working masks, I also consider all the money I've saved on ointments, panty hose, chin straps, tape, Polident strips, ACE bandages, scrunchies, and.....the wear and tear on my nose.

And now......back to our regularly scheduled programming.......

Den

NightHawkeye · Post by **NightHawkeye** » Mon May 21, 2007 3:00 pm

Anonymous wrote:
If you really need a full face mask, [...]
You make FF masks sound like a last resort, with wording like that. Some people don't NEED them, they simply PREFER them over weirder approaches like chinstraps or taping their mouths shut all night.

When I started out on this xPAP adventure, the salesperson at CPAP.com tried to talk me out of a full-face mask, but I persisted and ordered the Ultra-Mirage FFM. It would have saved me a month or so of grief though, if I'd listened to her . . .

Personally, I think everyone should start with one of each, both a nasal mask and a FFM. Seems like almost everybody ends up with more masks than that anyway, so why not just acknowledge that in the beginning and start off properly. Like I say, it would have saved me about a month of grief . . ., before I finally got my therapy optimized.

Regards,
Bill

tangents · Post by **tangents** » Mon May 21, 2007 3:48 pm

Wow, what a few badly chosen words can start. I'm sorry, full face mask fans, I meant no offense. My intended meaning was only in relation to Jefe's problems with them, and that it seemed like full face masks were the only ones he'd tried.

I'm using a F&P 432, as the CF2FF makes my teeth bleed, and I didn't like the seal much on the UMFF. I'm seriously thinking of trying a UMFF again

I just bought a hybrid myself, and although it leaked like a sieve, I thought it was really comfortable, and liked the thought that I could open my mouth if I wanted to. So I'm really not biased one way or another, and again I apologize.

Cathy