New CPAP user

I have been on CPAP for 3 months and I haven't found that much relief. I started out with a FFM and that was horrible with leaks and the strap in the bottom of my neck gave me headaches. I then tried a nasal mask and this seemed to be better but I have constant problems with it leaking and waking me up. I also tried the nasal pillows and that was very uncomfortable! I then went back to a FFM hoping maybe I would get used to it but it didn't help so now I'm back on the nasal mask. This one seems to be the best but I just can't get a good nights rest. I wake up with leaks and still feel even more tired than before I started CPAP. Any ideas? My setting is a 11. I would love to have a better night sleep and feel better during the day. Thanks.

phx1hab@gmail.com wrote:I have been on CPAP for 3 months and I haven't found that much relief. I started out with a FFM and that was horrible with leaks and the strap in the bottom of my neck gave me headaches. I then tried a nasal mask and this seemed to be better but I have constant problems with it leaking and waking me up. I also tried the nasal pillows and that was very uncomfortable! I then went back to a FFM hoping maybe I would get used to it but it didn't help so now I'm back on the nasal mask. This one seems to be the best but I just can't get a good nights rest. I wake up with leaks and still feel even more tired than before I started CPAP. Any ideas? My setting is a 11. I would love to have a better night sleep and feel better during the day. Thanks.

Yeah. Register on the forum, fill in your equipment profile and start reading as much as you possibly can here. Learn about the equipment you have (machine and mask).......and start asking questions.
You're not alone in your experiences.


Den

Where do I update my equipment? I'm already a registered user. Thanks.

I'd suggest you choose "Text" in that last box....not "Image."

It's easier to see the names of machines and masks instead of little pictures.

Welcome to the forum, phx1hab!

Will your DME work with you on getting a mask that works for you? Mine was very good- he brought numerous masks (based on his experience and my problems with a mask) over for me to try. You also can get second hand and sometimes new masks on cpapauction.com (except ResMed) so you can try masks you hear about that you think you might like. Many on line dealers offer return insurance if you want to try a new mask that way. Many of us have spent a lot of out of pocket money buying and trying new masks until we find the one that works.
Give us your machine and mask info and detail your problems with the mask and you should get some help here on the forum about favorite masks.
Good luck.

OK, you're on the right track. Now that you've put in your equipment there are two problems:

1. The humidifier listed does NOT match the machine you've listed. One or the other (possibly both?) is wrong. I'm guessing the machine is correct, the humidifier isn't. The humidifier right now isn't crucial, but pleas double check that you chose the right machine.

2. If that is the correct machine, you have a big problem. Your machine is NOT data capable. The reason this is not good is that you are having problems with your therapy. If you had a data capable machine--one that shows your AHI (number and type of apnic events) and leak data we could help you problem-solve, your doctor could help you problem-solve, your DME could help you problem-solve. But without data, everyone--including your doctor--is just taking shots in the dark. "Try this, maybe it will help, but we will not have a very good way of telling if it's helping or not" is a lousy way to get treatment. Imagine if you were a diabetic and you tested your blood sugar every day, but NOBODY could get the results. "Not feeling well, let's try increasing your insulin a little. Feeling worse? Let's lower it now." Dumb, right? So is a CPAP machine with no efficacy data. Unfortunately, after 3 months you may be stuck with that machine, if it's truly a CPAP Plus.

phx1hab wrote:I just can't get a good nights rest. I wake up with leaks and still feel even more tired than before I started CPAP.

Unfortunately mask problems are probably the #1 hurdle to being able to "do CPAP" and sleep well while using CPAP.

It's not at all unusual to feel even more tired after starting CPAP than before IF the mask isn't comfortable enough and leakproof enough to let a person actually "sleep." You've traded off apnea problems for treatment problems, and the treatment problems are bothering your sleep even more right now.

What you've been experiencing during your first three months is typical for many people on CPAP, so you're not alone... if that helps.

As Jan mentioned, it would be better if the machine you were given could show AHI and Leak data. Unfortunately (again) many DMEs give people a basic machine that records only hours of use (compliance) and gives no data at all to offer a clue as to how effective the therapy pressure is for keeping the airway open nicely. The doctor and DME are relying on the sleep study titration to have come up with the one single pressure that will prevent apneas and hypopneas from happening at all. It may, or may not be doing that. The pressure of 11 probably is doing the job fine, but...maybe not. Can't get even an idea if it is, or isn't, without a machine that can provide AHI and Leak data....often called "full data" on this message board.

However, I do think sleep study titrations get it "right" more often than not, so your continued tiredness, and feeling worse than before you started CPAP, is almost certainly related to the mask issues interfering with your sleep, rather than the prescribed pressure not preventing apneas.

Personally, every full face mask I've tried was a major annoyance to me for sleeping. But there are plenty of people who have found the right "FF" mask for them. Can take a lot of trial and error -- and for you, hopefully a cooperative DME who will keep letting you try different masks at home. There's an odd looking Full Face mask called FitLife Total Face mask made by Respironics, that comes as near to being "ok, this one isn't toooo bad" as I've found, for the rare nights I have to use a FF mask.

What I prefer using, though, and have used almost every night for the past six years is a nasal pillows mask. I have to put tape over my mouth to prevent mouth breathing while using nasal pillows AND a homemade strap around the pillows assembly to keep them steady at my nostrils AND a chin strap to keep my cheeks from ballooning out when my mouth fills with CPAP air detouring in and being held back by taped mouth. Sounds like a lot! But for me, tape, homemade strap, and chin strap and nasal pillows mask let me sleep very comfortably.

Each person has to figure out what will work for them. That's where this forum shines -- you can find soooo many ideas, tips and tricks to make "using CPAP" be comfortable enough to finally let you get some restful sleep. Many people have found you can't rely on the doctor or the DME to even know what can make it more "doable" for you, much less have the time to help you sort it all out.

Keep digging into this forum and it will get better.