Still fighting with it

OCNorsk · Post by **OCNorsk** » Thu Feb 12, 2009 12:59 pm

I am still getting frustrated and throwing the stuff off at night. I'm sure having a cold isn't helping. Up until last month, I thought you just took the machine and the mask, stuck it on your face and that was it...forever. Now I know better.

I see that there are hose management systems (I actually went to a store to look for an ironing board cord support before I knew of them), different chin straps and heated hoses. I have to say it's overwhelming. I would need a hose support that would clamp on the headboard. Is there such a thing? I was looking at the pictures on cpap.com and it looks like the supports sit on the nightstand.

I am interested in what others feel their "must have" accessories are, if any. My issues are too much air in my mouth, drying it out, either that or blowing into my sinuses and drying them out. Sometimes the hose gets unwieldy. My chinstrap squishes my ears and also gets all stretched out within days. Is a full face mask really the way to go? I wasn't given that even in my sleep study.

As always, thank you for your help.

MoneyGal · Post by **MoneyGal** » Thu Feb 12, 2009 1:22 pm

Hi OC - I'm another newbie. Welcome to the forum!

I have a heated passover humidifier integrated with my machine. My sleep doc said he would not consider a machine without a humidifier on it - he says that's all he prescribes (I'm in Canada, where the ambient temp is low in winter and forced-air heating is very dry). Having a humidifier would probably help with your dry mouth/nose.

Mask: I have a full-face mask and find it works very well for me. My doc asked whether I get more than one or two colds per year and when I said yes, he said FF was the way to go for me. Any chance you can try one out?

Hose management: I put a teacup hook on my headboard (wooden headboard, I screwed it in) and then hung a hair elastic from, and snaked the tube through that. Simple, cheap and effective.

Georgio · Post by **Georgio** » Thu Feb 12, 2009 1:36 pm

I tore off the mask in frustration for awhile too, as well as most of us. It gets much better, and you have come to the right place to get answers to make it work for you. I found going to an overhead hose arrangement a huge improvement because you don't get tangled in the hose and can flop all over the bed if you want.

Link to overhead hangers: viewtopic.php?t=10640

Dry mouth points to mouth breathing. If so you have to get that under control. If your chinstrap is stretched out maybe it's not working. Some of us have been able to train our tongues to stay in the top of our mouth (mine is right now) by using a small piece of tape on our mouths. Others just tape their mouth shut. Dry nose might be improved with a higher humidifier setting. Colds do wreck havoc on cpap therapy, I use sinus headache meds.

A full face mask that fits without leaks would prevent mouth breathing, however because of the large seal area with full face masks, they are harder to get a good seal. Many like the Swift LF mask I use that is the successor to the Swift II.

What are your titrated Pressure, Machine Settings, and are you getting any nightly data?

If it's any consolation, we have all been in your shoes (well the women anyway) and you will get there.

Georgio

OCNorsk · Post by **OCNorsk** » Thu Feb 12, 2009 2:42 pm

Thank you for your input.

I certainly have a cup hook and some scrunchies. I can rig up a hose holder for tonight.

Georgio... I am embarrassed to admit this, but I don't get the numbers stuff. I do check the AHI's which seem to go up the better I think I've slept. I got my leak rate down to 25 but that's when the AHI's went up. Wulfman gave me all the info I needed to check the stuff on the machine and I'm afraid to touch anything. So afraid I will break it or ruin it.
I am at 6 cm which sometimes still feels like it's blowing my head off. There is a humidifier on the machine and thank you for mentioning it. I usually keep it around 3 or 4 and I just checked it: it was below 1. Must have been one of those middle of the night fumbles.

I guess, to me, the weirdest thing is, as soon as I think I've got it down, "This is great!" something happens and I'm back to square one. Right after I joined the forum, I got great advice. I did as suggested, had two or three great nights and ...

I have had my machine for several months. I have started and stopped many times. I have to say, since I've found this forum, I might give up after I start for a night, but I always start again the next one.

Georgio · Post by **Georgio** » Thu Feb 12, 2009 7:43 pm

If you can get a card reader and software, you can just pull out the card in the morning, pop it in your card reader attached to your computer, then you will get a wealth of data to help you maximize your therapy. It's very simple, and you never need to touch the buttons on the machine. I check mine every morning.

OCNorsk · Post by **OCNorsk** » Thu Feb 12, 2009 9:48 pm

Thanks again.

I guess I'm going to have to put a card reader into the budget.

Debjax · Post by **Debjax** » Thu Feb 12, 2009 10:10 pm

My "must haves"....

1. Hose hanger. Hubby made one for me the day after I went on CPAP, it clamps to my headboard. There are others that the base slips between the mattress and box spring, some that stand on the floor and by now, I'm sure someone has posted links to the numerous creative and very effective methods of making a hanger that will fit almost any situation.

2. Hose cover. I made the mistake of thinking they were only "decorative" and in my newbie, know it all, superior self confidence thought it was pretty silly that people would take the time and go to the expense to buy a hose cover...I mean really. Then I woke up at 2 am and learned what rainout is. I now have a resmed cover on my hose, covered at this time by heavy knee socks until I can get the colorful knitted cover finished.

3. Card reader and software to read your data. Hubby laughed at me when I got my reader, thought I was being a bit over the top and geeky (I am a technoid).....He got his machine 2 weeks ago, and has had me reading his data daily to see how his numbers are doing until we can get his AHI down...we're making progress, he was at 5.1 night before last.. I may have a PCMCIA card reader and the software for sale early next week for the Respironics, after my DME swaps my M Series Pro for the ResMed Elite II..she's supposed to be bringing it to my office on Monday.

4. A mask that works for you. I went through 5 masks before I found one that works for me. I really don't even notice my mask is on now....It's tweaked and fidgeted until the straps are set to perfection..Leaks are within range and AHI is down to between .3 and .7 now. I'm using the Mirage Micro in a small, hubby is using the Quattro FFM in a small and he likes that too. His leak rate was flat except for a few leaks on the last data download...

Debjax · Post by **Debjax** » Thu Feb 12, 2009 10:12 pm

OCNorsk wrote:Georgio... I am embarrassed to admit this, but I don't get the numbers stuff. I do check the AHI's which seem to go up the better I think I've slept. I got my leak rate down to 25 but that's when the AHI's went up. Wulfman gave me all the info I needed to check the stuff on the machine and I'm afraid to touch anything. So afraid I will break it or ruin it.

I am at 6 cm which sometimes still feels like it's blowing my head off. There is a humidifier on the machine and thank you for mentioning it. I usually keep it around 3 or 4 and I just checked it: it was below 1. Must have been one of those middle of the night fumbles.

Hmmm...you're at 6cm and when the mask is not leaking you're AHI goes up? I'd check with the doc and see if maybe your pressure is too low and the CO2 not exhausting completely?

OCNorsk · Post by **OCNorsk** » Thu Feb 12, 2009 11:44 pm

Thanks Debjax.
A lot of good information there. I actually found myself sitting here saying "Wow!" outloud when I saw your AHI #'s.
I can see I've only just begun.
What is rainout? Is that when the hose gets so full of water it rattles and then when you take it off it spills water all over the bed?

KevinMWHM · Post by **KevinMWHM** » Fri Feb 13, 2009 1:41 am

Hey OC - The mouth thing absolutely killed me. I had the same nose pillows and just didn't get any consistency. Ended up with a full face and fell in love with it. I'm able to get up to 5 hours in just a couple weeks. Because I'm still new, I haven't made a big deal about my numbers yet. I'm going to get the numbers from my Doc in another week or so and will consider a reader if I'm all over the place but right now, I just keep a diary of small changes. I haven't had any hose problems because with the mask I'm pretty motionless and since going to the full face, I can keep the humidity real low so I'm not getting any moisture problems in the hose or mask.

rested gal · Post by **rested gal** » Fri Feb 13, 2009 1:47 am

OCNorsk wrote:What is rainout? Is that when the hose gets so full of water it rattles and then when you take it off it spills water all over the bed?

Yup. Or, in some cases, rolls into your mask and into your nose, or spits water on your face within the mask.

Here's how some people combat "rainout":

LINKS to discussions about the Aussie heated hose - to prevent rainout
viewtopic.php?t=5305

OCNorsk · Post by **OCNorsk** » Fri Feb 13, 2009 9:07 am

I really appreciate the help I'm getting. I got the hose hung up. I just took string and hung it from the window lock above the bed. That was easy.
I've actually been practicing the tongue thing for a couple weeks, but I don't think I've got it down quite yet.
Apparently I did not do well last night as I saw that my AHI's were up to 4.1 for the seven day average which means I must have had about 20 last night to move the average up that much. After looking at that I gathered up my courage and moved the pressure myself up to 6.5.
I swear, really, at one point last night it felt like someone bounced a soccer ball off the top of my head. It hurt and of course it woke me up. I seem to have these problems when I'm on my back. But my left side is starting to stiffen up again from sleeping on it.
I got the hose hung up, which helped a lot, but I think I need to hang by my knees to sleep.

ozij · Post by **ozij** » Fri Feb 13, 2009 9:37 am

Your AHI may go higher because you're sleeping deeper - which is all to the good.

At a pressure of 6.5 you are almost bound to have rainout. The lower the pressure, the more rainout we have.
I need all the help I can get against it:
A heated hose
A fleece hose cover
A fleece cover for narrow mask-tube too.

Since I have low pressure, my rainout happens in the mask area - keeping the cpap low is no help with that at all - it was covering the mask tube that was the final touch for me. Also, with lower pressure, we really can set out humidifiers at lower hear. Mine is less than half the scale.

O.

OCNorsk · Post by **OCNorsk** » Fri Feb 13, 2009 10:23 am

AHA!! I thought that I was sleeping better, so I wondered why the AHI's were going up.
I'm starting to get the hang of this thing. Sort of.
Now about the hanging by the knees sleep position....
I got the hose hanging from the window.
So now I need:
a hose cover
a heated hose
a card reader and software....does that go onto your computer and does it work with Mac?
and probably a full face mask...which means I can dump the chin strap, right?

sop1 · Post by **sop1** » Fri Feb 13, 2009 11:59 am

Maybe less is more and going with the flow can make things easier. I found my preconceived ideas of how I sleep were different that what actually happened and, additionally, my sleeping habits changed after I started using CPAP. Once I arranged things to meet how I actually sleep it got easier. Getting the right info of how you move at night, how you breath, etc might be helpful and keep you from doing a hit or miss trial approach. Myabe your spouse can video tape or tell you.
-- I am a side sleeper and generally roll left-right. I found that placing the machine on a night stand next to the bed next to my head with the hose coming in at a right angle to my head was the best. The hose elbow points up and the hose goes kind of above my head. The weight of the hose hanging on the side of the bed regulates hose and keeps it from tangling. Before I had it coming from above over the headboard which never shifted right and got tangled. Since using CPAP I don't roll as much and this method falls in line even better.
-- Maybe you are more of a mouthbreather than you realize (or maybe want to be) and should just go with it. I am and use a full mask. The air pressure is going to blow your mouth open and fill your mouth so you may need to relax and work with it. For me this is reassuring that things are working but may take getting used to for you. As far as dry mouth I find that putting the humidifier on a low setting is a balance point between dessert mouth and drooling in the mask. I do not have a rain out issue and have no helpful suggestions.

I guess my suggestion is to get more real info on how you move, lay, breath, etc while sleeping and choose the tools that are less complicated. Once this starts kicking in it just gets better and better.

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