My first night on CPAP (and a "thank you")

[Tracy1968]

First off, I want to say thank you to everyone on here who has helped me so far.

A quick backstory: I've had sleep issues for years, but severe fatigue along with a-fib and other unexplained heart issues for the past several months -- so severe that I've been off of work since October (I hate telling people that because I feel like a deadbeat). The medical field moves slowly, but a cardiologist strongly suspected a sleep disorder. I had the initial test and the titration study done, got my prescription a month ago and that's where everything came to a halt. Several DMEs refused to put the order through because my AHI isn't high enough for insurance to cover the cost, and the pulmanologist is dragging his feet providing additional documentation stating that respiratory events are likely the cause of my heart issues and he strongly feels CPAP will help. Maybe he'll do it this week, maybe not. I've contacted his office a bazillion times and even the bigwigs at the hospital where he's assigned. I just wait. My tiredness is so bad from the moment I wake up, my entire life has stopped -- and happiness has been replaced with depression and anxiety. From some of the pre-recovery posts I've seen on here, I'm not alone.

Anyhoo -- Because of so many of you on this site, I was able to learn a lot (still a lot to learn though), took initiative to order my own machine (the least expensive but highest rated one I could find on CPAP.COM since being out of work has completely depleted my finances), got it last night, hooked it up and used it for the first time.

No, I didn't magically bound out of bed this morning full of energy (I know that's rare). The mask leaked and the whooshing sound woke me up several times during the night. But I did it. And wearing the mask and hose, etc. wasn't as horrible as I expected it to be. Actually, it wasn't horrible at all.

I am single, under a tremendous amount of stress (my own health issues, no money, elderly parents who aren't doing well, you name it) and I literally could not have done what I've done so far without those of you on this site.

Yes, I need to at some point get a data capable machine and I need to find a mask that fits better sooner rather than later. But for the first time in months, I am at least hopeful. So, for that I am grateful.

So ... thank you.

[poppi2]

It's nice to hear from a novice user with a great attitude wrt cpap therapy. I'm sorry to hear about your stressed life, but I think you have taken a big step forward. Good luck, Earl

[2Tim215]

Welcome Tracy! I hope everything pulls together for you soon. Sounds like you are on the right track, just hope your medical people will get it together for you also. This is a great community. I believe I have OCD, never really medically documented but my family and friends tease me about some of my habits. I NEVER thought I would make it through a overnight sleep study with a bunch of wires attached to me but I made it through. Good thing Severe Sleep Apnea, 69 events an hour! Then when I saw the head gear and hose they wanted me to sleep with for the rest of my life I thought, "no way!". But here I am years later and only missed I believe one night for forgetting to bring my machine with me on a one day vacation. Keep us posted, hope you sleep well!

[library lady]

A suggestion for you regarding the mask, leaking and whooshing were the biggest hurdles for me, and then I discovered.... MASK LINERS. They were a game changer for me. They are a bit pricey, but if you want cheap ones, there is a pattern for one online... google "DIY cotton mask liner" and print it, cut it out. Then find an old t-shirt or cotton panties and cut some out. For hints on how to use them, there are probably some You Tube videos, or you might try going to RemZzz.com. They are the makers of one of the popular mask brands. There might be some tips for you there. I started out buying them ($30 for a pack of 30), but then discovered the pattern, which closely matches the RemZzzs liner. I wash mine with my laundry in a mesh bag, and I use each just one night before putting in the bag. I lay them out flat to dry, then iron to help them retain their shape. Some here have said they don't iron them.

If your mask is truly not the right size or kind for you, liners might not make a big difference, but if they do, you might not need to find a different mask.

What was you AHI during the study? If greater than 5, then you should qualify for cpap. If you don't have a copy of your study results, please try to get them and post the results here; we can better advise you on the technical aspects. I do hope you can work out the DME difficulties before long.

[Tracy1968]

A suggestion for you regarding the mask, leaking and whooshing were the biggest hurdles for me, and then I discovered.... MASK LINERS. They were a game changer for me. They are a bit pricey, but if you want cheap ones, there is a pattern for one online... google "DIY cotton mask liner" and print it, cut it out. Then find an old t-shirt or cotton panties and cut some out. For hints on how to use them, there are probably some You Tube videos, or you might try going to RemZzz.com.

THANK YOU!!

[cctex]

I haven't been on the site lately but wanted to reply when I saw your post. When I did my sleep study my AHI was 85. The mask liners made all the difference in the world to me getting comfortable with the mask. It will feel better and stop most of the leaks. I've been using them for almost 2 years now and my AHI is usually 0 to .5. Good luck and ask any questions you might have. There are some great and knowledgeable people here.

[yaconsult]

Welcome, and it's great that you have started the process of getting better sleep! From here on, it's just a matter of tuning and tweaking. You're way ahead of the game by starting out with a good machine that will let you monitor your progress and make adjustments. There is an acclimatization period for most people and you'll probably want to experiment with some of the different comfort features like exhalation relief and humidity.

Pugsy has lots of great posts at the top of the board answering many questions that you may have now that you've started treatment as well as info on how to post screenshots if you want to get advice or feedback on how your therapy is going. The helpful people here have outstanding knowledge and advice to help cope with any issues that come up.

[Drowsy Dancer]

You can also get mask liners from Pad-A-Cheek, http://www.padacheek.com. Karen, the owner, is an xPAP user and a member here. The products are well-designed and her customer service is great (NOT a paid endorsement ). I use the barrel cozies on my nasal pillows, and I use a hose cozy on my non-heated hose.

[TexasTom]

You can also get mask liners from Pad-A-Cheek, http://www.padacheek.com. Karen, the owner, is an xPAP user and a member here. The products are well-designed and her customer service is great (NOT a paid endorsement ). I use the barrel cozies on my nasal pillows, and I use a hose cozy on my non-heated hose.

Interesting!

One thing I was never aware of was how oily my skin was. Normal wash a pillow case weekly, and not aware. Suddenly with the WISP at night, face doesn't roll across the pillow, so just seems that more oily when I wake up. I suspect as summer approaches with warmer weather those pad a check may help keep the mask in place. As my mother would say it was the blessing and curse of Irish skin.... lots of pimples as a teenager, but less wrinkles later in life!

[palerider]

You can also get mask liners from Pad-A-Cheek, http://www.padacheek.com. Karen, the owner, is an xPAP user and a member here. The products are well-designed and her customer service is great (NOT a paid endorsement ).

she's also a very nice lady.... she's been hanging out in the IRC channel now and then.

[runnerpaul]

Thanks to all of you who posted here! Great information. I started using RemZzz a week ago and have seen a great improvement in less leaks, noise and soreness on the bridge of my nose. I will be looking into using Pad-a-Cheek as well.