What a Godsend you all are...

jabberwock · Post by **jabberwock** » Fri Apr 27, 2007 6:39 pm

I wish I had found this site a few years ago! I was diagnosed with sleep apnea in 2003, and blindly followed instructions from my family doctor, my sleep doctor and my DME, without ever questioning anything

I actually used my CPAP and initial mask fairly regularly (okay, maybe 4 or 5 nights out of seven) for the first several months. I never really got used to the feel of sleeping with the mask on, and more often than not I would toss it on the floor part way through the night. When I went back for my annual sleep study and admitted I didn't use my CPAP regularly, it was suggested I try a different mask. I was given another mask to try (both nasal masks, btw) and hated it. It whistled and leaked and practically drowned me no matter what setting the humidifier was on. I gave up, returned the mask over a year ago and haven't used it since.

A few days ago I decided I was in enough misery and exhaustion from sleep deprivation that I had to try again. That is when I found this site, and I have been reading ever since. I went back to my DME yesterday and had my CPAP (Remstar Plus with humidifier) adjusted according to a sleep study I had done in December and asked for a nasal pillow mask. They gave me a Mirage Swift to try, and miracle of miracles, I kept it on all last night! It's certainly not perfect, and I did wake up several times to adjust it, I was barely sleeping at night anyway, so it was no worse.

I have learned so much here over the last few days about equipment and adjustments and common issues. It is so wonderful to know that most people do struggle at the beginning and that I just need to persevere, ask questions and make informed decisions!

Thank you all so much for being here

Bonnie

tangents · Post by **tangents** » Fri Apr 27, 2007 6:57 pm

Hi. Jabberwock, and welcome to the forum!

I'm new to OSA, and to the forum as well, but I'm still glad you found us! There are so many wonderful and smart people here that can help you with your therapy. Ask questions and post your equipment, so folks will know how to resond. The more information you give, the more help you'll get.

Take care, and keep posting!
Cathy

woozle · Post by **woozle** » Fri Apr 27, 2007 7:38 pm

So glad you found this site It is great and I have just completed my first year and after many trials and tribulations, I am now sleeping every night very well and I feel better than I can ever remember feeling. Keep on trying as it really is worth it, your body and your family will thank you.

bdp522 · Post by **bdp522** » Fri Apr 27, 2007 7:51 pm

Welcome! Do be sure to read 'Our collective wisdom', just click on the yellow light bulb at the top of the page.

Brenda

jabberwock · Post by **jabberwock** » Fri Apr 27, 2007 7:51 pm

Thanks for the welcomes; I'm sure I will have a million questions, now that I have people to ask!

For now, and I can't believe I feel this way, I'm anxious to go to bed and see if I can get a decent night's sleep...

Bonnie

bdp522 · Post by **bdp522** » Fri Apr 27, 2007 7:54 pm

Ask all the questions you want! There is always someone around to answer them for you! And remember...there are NO stupid questions! If you are asking there are at least 10 more wondering the same thing.

Brenda

sharon1965 · Post by **sharon1965** » Sat Apr 28, 2007 10:49 am

jabberwock

welcome to the boards! i'm new, too and wish i'd found this between my titration and my equipment set-up, i would've had less issues frustrating me, too...but we're here now, so best of luck!

woozle said:

It is great and I have just completed my first year and after many trials and tribulations, I am now sleeping every night very well and I feel better than I can ever remember feeling.

yayy woozle, congrats! i can't wait to be where you are, thanks for the inspiration

sharon1965

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): Titration

jabberwock · Post by **jabberwock** » Sat Apr 28, 2007 12:47 pm

Thanks again for the welcomes

I had difficulty getting to sleep last night, but that's pretty normal for me. I seemed to be fiddling with the interface an awful lot. I slept fitfully for about three hours, then took the mask off. It was just too annoying. Well, after about 20 minutes, I felt guilty, so I put it back on and tightened the straps and I did sleep better for about another three hours.

I think part of the problem is the side hose on the Mirage Swift that I am trying. I tend to sleep on my sides (flipping from one side to the other), and the hose always seems to be in my way. I like the nasal pillows better than the nasal mask I used to wear. There doesn't seem to be as much leakage, and I don't have dry eyes from the vent like I did from my last mask.

I was given the Remstar Plus CPAP when I was first diagnosed, and didn't know anything about the machines at all. When I went back to my DME on Thursday, I asked about an APAP, and was told that Canadians don't need them because we have enough sleep centres to have a sleep study done every year. I was told that Americans can wait up to four years for a sleep study, so they need to monitor their own.

After listening to a lot of you here, I think it would really help to have a machine that gives me more information. I have no idea whether I sleep with my mouth open, no idea whether the mask is leaking until it wakes me, and no idea how many AHI (?) I have each night.

I'll keep using my Miracle Swift for a little longer, but I might ask to try one of the nasal pillow masks where the hose goes over the head since it might be more comfortable when sleeping on my side. What do you think?

Bonnie

Wulfman · Post by **Wulfman** » Sat Apr 28, 2007 1:31 pm

Hi Bonnie.

I don't think you've told us what pressure your machine is set to.
I won't try to advise on the mask issue other than to say that I like the one I have (which I've been using from the start). The mask issue is very individualistic.

Can you talk them into a machine that at least records nightly data? They may not go for the APAP, but if you can at least get a REMstar Pro 2 or an M Series Pro, you could at least be able to monitor your therapy with either of those two machines.

Best wishes,

Den

bdp522 · Post by **bdp522** » Sat Apr 28, 2007 1:38 pm

One way to tell if you're mouth breathing is to tape your mouth shut. I use Kendalls tenderskin paper tape every night. If your numbers go down, you know you were leaking.

Brenda

sharon1965 · Post by **sharon1965** » Sat Apr 28, 2007 1:49 pm

jabberwock

i didn't notice in your earlier post that you were from ontario! hello from windsor!

i used the swift the first time i tried nasal pillows and compared to the nasal mask i thought i had hit the jackpot...at that time i had been sleeping on my back for a few years due to hip pain, so it was ok...the sleep doc said i had to really try to avoid the supine position to try to reduce my apneas and then i started sleeping on my sides more, which i got used to pretty quickly, except for the swift side hose issue...i did try to route it overhead but it just really bugged me, plus the frame that the pillows are on was too wide and would get pushed aside by my pillow...i'm using the comfortlite2 these days and like it much much better, but i just got a new twilightNP (i paid out of pocket for it because my supplier had never heard of it and said it wasn't available through canadian suppliers--who knows?but i got a good deal from another forum member, so it was worth it to me) so i'm getting ready to try that tonight...lots of people on here swear by this one, and also the breeze seems to be very popular, lots of user loyalty
of course, i'm no expert, and that's just my own 2 cents
good luck!
sharon1965

Wulfman · Post by **Wulfman** » Sat Apr 28, 2007 1:50 pm

bdp522 wrote:One way to tell if you're mouth breathing is to tape your mouth shut. I use Kendalls tenderskin paper tape every night. If your numbers go down, you know you were leaking.

Brenda

But Brenda.....she doesn't KNOW what her numbers are with a "Plus" machine.
That's why she wants a better machine.

Den

jabberwock · Post by **jabberwock** » Sat Apr 28, 2007 2:03 pm

Sorry about that... the pressure is set at 6. It was at 7 at first, but it was lowered to 6 after my sleep study in December.

Good idea Brenda, but as Den said, I don't know what my numbers are. Taping my mouth shut kind of creeps me out...

One issue on the machine is that I think my insurance only pays for one every five years, so I would have to wait another 18 months or so, unless I pay for it myself. I guess I need to decide if it's worth it.

Thanks for the info on the nasal pillow masks Sharon. I will ask to try both. It will be interesting to see if my DME knows of the Twilight NP. Please let me know how you like it!

Bonnie

Wulfman · Post by **Wulfman** » Sat Apr 28, 2007 2:17 pm

If you're waking up with a dry mouth.....that's a clue you're mouth-leaking or mouth-breathing.
For many of us who were mouth-breathers before therapy, keeping the mouth shut can be hard to learn.
In many cases, with a nasal mask, our mouths will fall open and air will leak out.....that's mouth-leaking.
Sometimes at low pressure, the person doesn't feel like they're getting enough air through their nasal passages and will open their mouth to inhale more air.....that would be mouth-breathing.
In either case, it's a loss of therapy air pressure.
Keep watch for the signs.

Den

RosemaryB · Post by **RosemaryB** » Sat Apr 28, 2007 3:34 pm

[quote="jabberwock"]They gave me a Mirage Swift to try, and miracle of miracles, I kept it on all last night! It's certainly not perfect, and I did wake up several times to adjust it, I was barely sleeping at night anyway, so it was no worse.

Bonnie

Mask

Additional Comments: Pressure: 8

Mask

Additional Comments: Pressure: 8

Mask

Additional Comments: Pressure: 8

Mask

Additional Comments: Pressure: 8

What a Godsend you all are...

What a Godsend you all are...

Re: What a Godsend you all are...